Supportive groups for siblings of pediatric oncology patients: impact on anxiety
Houtzager, B. A., Grootenhuis, B. F. & Last, B. F.
(2001)
Childhood cancer can have a substantial emotional impact on the siblings of the sick child. In order to help these siblings adjust to the illness, supportive groups were started in 1994 at our medical center. The program is based on a model of psychosocial support; the aim of the group is to enhance control strategies and, thus, to reduce anxiety. It consists of five sessions and is offered to siblings aged 7–18. The study objective is to evaluate the effect of group participation on sibling anxiety. The State Trait Anxiety Inventory for Children was administered to 24 siblings before and after group participation.
Results showed that siblings experience less anxiety after participating in the group. Before group participation, a majority of the siblings were more anxious compared with normal peers. The sibling's age and sex, whether the ill child is in treatment, survival perspective, and time since diagnosis were not related to anxiety reduction. The continuation of the group is supported by its positive impact on siblings. Results must nevertheless be interpreted cautiously, considering the small number of siblings participating in the study, the lack of a control group and the restriction to one outcome measure.
Survivors of suicide do grieve differently: Empirical evidence for a common sense proposition
Bailley, S.E., Kral, M.J., & Dunham, K.
(1999)
Previous empirical investigations have produced mixed results on the question of whether mode of death differentially affects grief. To further investigate the influence of suicide on grief, 350 previously bereaved university students completed a questionnaire package consisting of several standardized measures. Participants were separated into four groups based on the mode of death experienced as either survivors of suicide (n = 34), accident (n = 57), unanticipated natural (n = 102), or anticipated natural (n = 157) deaths. Hierarchical multiple regression analyses indicated that suicide survivors, compared against the other groups, experienced more frequent feelings of rejection, responsibility, "unique" reactions, and more total grief reactions. Trends indicating increased levels of shame and perceived stigmatization were also evident. Aggregate factors of death "naturalness" and "expectedness" showed less influence than mode of death in influencing grief. Overall, results support previous clinical and research findings and intuitive logic in demonstrating that the grief experienced by suicide survivors includes elements that are less frequently seen in the case of nonsuicidal deaths.
The Behavior Management Flow Chart: a component analysis of behavior management strategies
Danforth, J. S.
(1998)
Representative published child behavior management research was reviewed. Based upon the review, a task analysis of child behavior management strategies was conducted. The Behavior Management Flow Chart is a flow chart of the task analysis that synthesizes the research into a cohesive unit and visually depicts actions that adults may be trained to use to manage misbehavior displayed by disruptive children. A discussion compares and contrasts the Behavior Management Flow Chart with Hanf-model behavior management programs, the appropriate unit of analysis is examined, and concerns regarding integrating a wide range of research variables into a unitary model are addressed.
The child´s worries about the mother´s breast cancer: Sources of distress in school-age children
Zahlis, E.H.
(2001)
Abstract
PURPOSE/OBJECTIVES:
To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer.
DESIGN:
Descriptive, qualitative study.
SETTING:
Private family homes.
SAMPLE:
Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer.
METHODS:
Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer.
MAIN RESEARCH VARIABLES:
Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses.
FINDINGS:
The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family would have to cut back financially; worrying about talking to others; and wondering if they, the children, would get cancer.
CONCLUSIONS:
Children of mothers with breast cancer experience multiple worries concerning their mothers, their families, and themselves. The data revealed that they attempted to make sense of their mothers' illness for themselves and imagined how it might affect their own lives in the future.
IMPLICATIONS FOR NURSING PRACTICE:
Programs and materials need to be developed that help parents address the multiple worries that children whose mothers have early-stage breast cancer experience.
The Consequences of Attention-Deficit/Hyperactivity Disorder in Adults
Goodman, D. W.
(2007)
Until recently, attention-deficit/hyperactivity disorder (ADHD) was a diagnosis reserved for children and adolescents as it was believed to dissipate before adulthood. New evidence, however, supports the persistence of ADHD beyond adolescence, and it is now recognized as a chronic neurobehavioral disorder in adults. Adults with ADHD have difficulties with school, work, family interactions, and social activities. Although treatments are available for adult ADHD, many patients never receive an accurate diagnosis that would afford them appropriate therapeutic intervention. If left untreated, adult ADHD can cause significant personal, social, and economic burdens that can have a negative impact on overall quality of life. This article discusses how ADHD presents in adults and the effects of the disorder on educational, occupational, interpersonal, and social functioning. Currently available treatments for ADHD in adults are also reviewed.
The coping experiences of carer´s who live with someone who has schizophrenia.
Huang X, Sun F, Yen W, Fu C.
(2008)
AIMS AND OBJECTIVES:
The purpose of this study was to understand the coping experiences of carers living with a schizophrenic family member. Our research may be a valuable reference for mental health professionals seeking to improve the quality of care for people with schizophrenia and their carers.
DESIGN:
We employed a qualitative descriptive phenomenological research methodology to understand the coping experiences of carers living with a schizophrenic family member.
METHODS:
Purposive sampling and in-depth, face-to-face interviews were used to collect data. When data saturation was reached, the sample size comprised 10 carers (five men and five women). The interview focused on the carer's coping experience. During the process of data collection and data analyis we established epoches (bracketing) and returned to the reality of the carers' experience to keep the data objective. Narratives were analysed according to Colaizzi's seven steps method.
RESULTS:
The two most commonly used coping mechanisms that emerged from this study were psychological coping strategies (cognitive, behavioural and emotional) and social coping strategies (religious, social and professional support). Furthermore, three factors were found in the study, including low social status, traditional help-seeking behaviours and feelings of shame.
CONCLUSION:
Findings from this study demonstrate the importance of understanding the coping experiences of carers who have a family member with schizophrenia. Further research is needed to identify more important detailed factors that affect the coping strategies of carers. Relevance to clinical practice. Community mental health care professionals need to improve the quality of care for helping carers living with a family member who has schizophrenia. It is important to develop effective coping intervention strategies that help carers cope with the stress and strain of caring for a family member with schizophrenia.
The definition of disability: what is in a name
Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S.
(2006)
The definition of the word disability has been debated for the UN Convention on the Rights of Persons with Disabilities, and the final draft will soon be submitted to the UN General Assembly for approval.1 WHO has been mandated to produce a world report on disability and rehabilitation by 2009 to collate the best evidence about the prevalence, distribution, and trends of disability and recommend action.2
The earnings of informal carers: Wage differentials and opportunity costs
Heitmueller A, Inglis K.
(2007)
Abstract: A substantial proportion of working age individuals in Britain are looking after sick, disabled or elderly people, often combining their work and caring responsibilities. Previous research has shown that informal care is linked with substantial opportunity costs for the individual due to forgone wages as a result of non-labour market participation. In this paper we show that informal carers exhibit further disadvantages even when participating. Using the British Household Panel Study (BHPS) we decompose wage differentials and show that carers can expect lower returns for a given set of characteristics, with this wage penalty varying along the pay distribution and by gender. Furthermore, opportunity costs from forgone wages and wage penalties are estimated and found to be substantial.
The economic consequences of autistic spectrum disorder among children in a Swedish municipality
Järbrink, Krister
(2007)
In this study, the societal economic consequences of autistic spectrum disorder were investigated using a sample of parents of children identified with the disorder and living in a Swedish municipality. Cost information was collected using a postal questionnaire that was developed through experiences gained from an earlier study. Using conservative assumptions, the additional societal cost due to the disorder was estimated to be approximately 50,000 annually per child. Parents of children with the disorder spent an average of about 1000 hours per year additionally caring for and supporting their child. The study indicates that the major cost drivers for autistic spectrum disorder among children can be found within the community for support and schooling, while the major impact on relatives is on time spent and thereby quality of life rather than a financial burden.
The effect of color on the recognition and use of line drawings by children with severe intellectual disabilities
Stephenson, J.
(2007)
Line drawings are commonly used as communication symbols for individuals with severe intellectual disabilities. This study investigated the effect of color on the recognition and use of line drawings by young children with severe intellectual disabilities and poor verbal comprehension who were beginning picture users. Drawings where the color of the picture matched the object and where the color of the drawing did not match the object were used, as well as black and white line drawings. Tentative findings suggest that some students with intellectual disabilities may find it more difficult to recognize and line drawings where the color does not match the object compared to line drawings where the color of the drawing does match the color of the object.
The effectiveness of bereavement interventions with children: a meta-analytic review of controlled outcome research
Currier, J.M., Holland, J.M., & Neimeyer, R.A.
(2007)
Abstract
Grief therapies with children are becoming increasingly popular in the mental health community. Nonetheless, questions persist about how well these treatments actually help with children's adjustment to the death of a loved one. This study used meta-analytic techniques to evaluate the general effectiveness of bereavement interventions with children. A thorough quantitative review of the existing controlled outcome literature (n = 13) yielded a conclusion akin to earlier reviews of grief therapy with adults, namely that the child grief interventions do not appear to generate the positive outcomes of other professional psychotherapeutic interventions. However, studies that intervened in a time-sensitive manner and those that implemented specific selection criteria produced better outcomes than investigations that did not attend to these factors.
The effectiveness of Talking Mats® with people with intellectual disability
Murphy, J., & Cameron, L.
(2008)
People with intellectual disability have significant difficulties in ensuring their voice is heard. Talking Mats is a low tech communication resource which helps understanding and supports expression. This study examined the effectiveness of the resource for people with intellectual disability. A mixed method quantitative and qualitative study involving 48 people at four levels of comprehension was designed to compare the effectiveness of Talking Mats with the individual's main communication method. Thirty of the 48 participants were identified as using Talking Mats effectively. Effective use of Talking Mats was associated with functional comprehension. The study found that scores on all indicators of communication effectiveness were higher when using Talking Mats compared to main communication methods. This study identified that Talking Mats can be an effective communication resource for many people with intellectual difficulty and can help them express their views by increasing both the quantity and quality of information communicated.
The effects of child maltreatment and polymorphisms of the serotonin transporter and dopamine D4 receptor genes on infant attachment and intervention efficacy
CICCHETTI, D., ROGOSCH, F. A. & TOTH, S. L.
(2011)
This investigation examined the extent to which polymorphisms of the serotonin transporter linked promoter region (5-HTTLPR) and the dopamine receptor D4 (DRD4) genes differentially influenced the development of attachment security and disorganization in maltreated and nonmaltreated infants at age 13 months, and the extent to which the efficacy of preventive interventions to promote attachment security were influenced by genetic variation. The sample consisted of 106 infants from maltreating families, participating in a randomized control trial evaluating the efficacy of two interventions, child-parent psychotherapy and psychoeducational parenting intervention, and 47 infants from nonmaltreating families. DNA samples were genotyped for polymorphisms of 5-HTTLPR, DRD4 exon III variable number tandem repeat, and DRD4-521. Attachment organization at age 1 and at age 2 was assessed with the Strange Situation for all participants, prior to and following the completion of the interventions. High rates of disorganized attachment were observed in the maltreatment compared to the nonmaltreatment group, and both interventions resulted in increased rates of attachment security at age 2. Genetic variation did not influence improvement in attachment organization among maltreated infants. Among maltreated infants, genetic variation had minimal effect on attachment organization. In contrast, among nonmaltreated infants, 5-HTTLPR and DRD4 polymorphisms influenced attachment security and disorganization at age 2 and the stability of attachment disorganization over time.
The Efficacy of Cognitive Behavioral Therapy for Adults With ADHD: A Systematic Review and Meta-Analysis of Randomized Controlled Trials
Young, Z., Moghaddam, N., & Tickle, A.
(2016)
OBJECTIVE:
To systematically review the literature on published randomized controlled trials (RCTs) of cognitive behavioral therapy (CBT) for adult ADHD and to establish the effectiveness of CBT in reducing ADHD symptoms.
METHOD:
A systematic review of nine RCTs and two subsequent meta-analyses of eight of the studies were conducted.
RESULTS:
Just nine studies were identified, of generally good quality but with some limitations. Four trials (total N = 160) compared CBT with waiting list controls, and three trials (total N = 191) compared CBT with appropriate active control groups. Meta-analyses showed that CBT was superior to waiting list with a moderate to large effect size (standardized mean difference [SMD] = 0.76, 95% confidence interval [CI] [0.21, 1.31], p = .006) and superior to active control groups with a small to moderate effect size (SMD = 0.43, 95% CI [0.14, 0.71], p = .004).
CONCLUSION:
These results give support to the efficacy of CBT in reducing symptoms of ADHD post-intervention.
The iconicity of picture communication symbols for children with English additional language and mild intellectual disability
Dada, S., Huguet, A., & Bornman, J.
(2013)
The purpose of this study was to examine the iconicity of 16 Picture Communication Symbols (PCS) presented on a themed bed-making communication overlay for South African children with English as an additional language and mild intellectual disability. The survey involved 30 participants. The results indicated that, overall, the 16 symbols were relatively iconic to the participants. The authors suggest that the iconicity of picture symbols could be manipulated, enhanced, and influenced by contextual effects (other PCS used simultaneously on the communication overlay). In addition, selection of non-target PCS for target PCS were discussed in terms of postulated differences in terms of distinctiveness. Potential clinical implications and limitations of the study, as well as recommendations for future research, are discussed.
The impact of hippotherapy on grieving children
Glazer, H.R., Clark, M.D. & Stein, D.S.
(2004)
ABSTRACT This article looks at the use of therapeutic riding, or hippotherapy, with children who are mourning the death of a family member. Therapeutic riding is the summer program that is part of the Evergreen support group for grieving school-age children and their families. A qualitative study of the impact of the riding program is presented. The research question was whether the children, parents, and adult volunteer would view the program as encouraging the processing of grief and person development. The following themes in perceived outcomes of the program were identified: confidence, trust, and communication skills. The parents and guardians all described the therapeutic riding as a positive experience. They noted an increase in overall communication, including talk about the deceased, as well as an increase in the child's self-confidence and self-esteem. Success with the horses appeared to be important to these children, who expressed pride and joy in their accomplishments.
The impacts of parental loss and adverse parenting on mental health: findings from the national comorbidity survey-replication
Nickerson, A., Aderka, I.M., Bryant, R.A. & Hinton, D.E.
(2013)
There has been much controversy regarding the psychological impact of the death of a parent, partly arising from neglect of potential moderating factors. The present study uses data from the National Comorbidity Survey Replication (NCS-R) to investigate the relative impacts of age at death of parent, adverse parenting practices, and time since loss on mental health outcomes in 2,823 bereaved adults. Logistic regression analyses controlling for sex and race revealed that younger age at the time of parental death was associated with poorer mental health outcomes. Further, adverse parenting practices during childhood were related to greater psychopathology in adulthood. Results also indicated that psychological distress following the death of a parent reduces over time. Notably, each of these factors significantly predicted psychopathology when controlling for all other variables. Findings are discussed in the context of current theories of attachment and psychopathology.
The incredible years: Parents, teachers, and children training series
Webster-Stratton C.
(2001)
This artcle summarizes the Incredible Years Series. The training series consists of three empirically validated and integrated programs for parents, teachers and children that are designed to promote social competence and prevent, reduce and treat conduct problems in young children. The training methods, content and processes are explained.
The NAS EarlyBird Programme: partnerships with parents in early intervention
Shields, J
(2001)
Early intervention bridges the gap between early diagnosis and appropriate educational placement. The National Autistic Society has developed an autism-specific three-month parent package, the NAS EarlyBird Programme, that emphasizes partnership with parents. Six families participate in each three-month programme, which combines weekly group training sessions for parents with individualized home visits. During the programme parents learn to understand autism, to build social communication, and to analyse and use structure, so as to prevent inappropriate behaviours. The use of video and the group dynamic amongst families are important components of the programme. An efficacy study evaluated the pilot programme and further monitoring is in progress. Training courses in the licensed use of the NAS EarlyBird Programme are now available for teams of professionals with prior experience of autism. Strengths and weaknesses of the programme are discussed. This short-term, affordable package, with supporting evidence of efficacy, offers a model of early intervention that is very popular with parents.
Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports
Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T.
(2006)
The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.
Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports
Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T.
(2006)
The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.
Utilization of medical healthcare among people receiving long-term care at home or in special accommodation
Condelius, A., Edberg, A.-K., & Rahm Hallberg, I.
(2010)
AIM:
To investigate the utilization of medical healthcare, hospital care and outpatient care, during a 1-year period in relation to informal care, multimorbidity, functional status and health complaints and to long-term care at home or in special accommodation among people aged 65+, with one or more hospital admissions and receiving long-term care.
METHOD:
A total of 694 people receiving long-term care during the year 2001 were studied. Data were collected by means of the administrative registers Patient Administrative Support in Skåne and PrivaStat and through the study Good Ageing in Skåne. Those at home and those in special accommodation were compared regarding utilization of medical healthcare, informal care, multimorbidity, functional status and health complaints. Multiple logistic regression analysis was performed using at home vs. in special accommodation as the dependent variable and also two multiple linear regression analyses using the number of hospital stays and the number of contacts with the physician in outpatient care separately as dependent variables.
FINDINGS:
Those at home were significantly younger (mean age: 81 vs. 84 years) and less dependent in personal and instrumental activities of daily living (PADL/IADL) than those in special accommodation. A larger proportion of those at home was admitted to hospital three times or more (21 vs. 14%) and they had significantly more contacts with physicians in outpatient care (md: 10 vs. md: 7). Informal care was associated with care at home (OR = 0.074) and with utilization of outpatient care (B = 2.045). Dependency in PADL was associated with care in special accommodation (OR = 1.375) and with utilization of hospital care (B = -0.060) and outpatient care (B = -0.581).
CONCLUSION:
Medical healthcare seems more accessible to those who live at home are younger, less dependent and who have access to informal caregivers.
Validation of the CHORES: A measure of school-aged children´s participation in household tasks
Dunn L.
(2004)
The CHORES (Children Helping Out: Responsibilities, Expectations, and Supports) is a clinical and research tool that measures school-aged children's participation in household tasks. Separate performance and assistance scores enable examination of changes in children's responsibilities for household tasks as they mature and the work of families to promote their participation. The Self-Care and Family-Care subscales afford study of cultural aspects of household tasks that may influence children's participation and opportunities for learning. Thirty-two parents from diverse backgrounds participated in the first part of the study. Twenty-one of these parents participated in the test–retest study. The sample was culturally diverse and included parents of 6- to 11-year-old children with and without disabilities who have average or above intellect. Results from the psychometric analyses show that the CHORES has strong reliability and validity. The variance in children's task performance and overall levels of assistance supports the utility of this measure for capturing differences among children in the extent of their participation. Stability of parents' responses over time is strong both for performance (ICC, r=0.88) and for assistance (ICC, r=0.92) scores. The validity of the CHORES is supported by the parents' judgments of the importance of involving their children in household tasks. The CHORES is easy to complete, considers the parent's perspective, and provides a way to collect information on children's participation in household tasks. The CHORES provides a mechanism to learn more about factors that influence children's participation in household tasks, changes in their responsibilities over time, and outcomes from their participation in these tasks.
Women in the Middle. Their Parent-care Years
Brody, E.
(2004)
Women in the Middlewas so-named because daughters, who are the main caregivers to elderly disabled parents, most often in their middle years, are caught in the middle of multiple competing demands on their time and energy. Since the first edition, women's responsibilities and the pressures they have experienced have increased and intensified. Dr. Brody revisits this phenomenon in this new, updated edition of her ground-breaking work.
Women in the Middle, 2/e, describes and discusses the caregiving women's subjective feelings, experiences, and problems, and the effects on their mental and physical well-being, life styles, family relationships, and vocational activities. These case studies and narratives present an insider's view of the harsh and sometimes joyful experience of caregiving.
Special attention is given to the changing face of social, economic, and environmental conditions, as well as the diversity of the caregiver, in which caregiving, in which caregiving takes place.
Workforce capacity to respond to children whose parents have a mental illness
Maybery, D., & Reupert , A.
(2006)
Abstract
OBJECTIVE:
The first of the three objectives of this study was to identify the core barriers that impede adult mental health and other clinicians from working with patients about parenting and child-related issues. The second and third objectives were to rate the importance of these barriers and to compare barriers for adult mental health workers with other workers.
METHOD:
There were two data collection phases; the first, qualitative phase involved collecting verbatim responses from 60 mental health and welfare workers, regarding barriers about working with mentally ill patients about their parenting role as well as with their children. The second involved 32 participants, including 20 adult mental health workers and 12 other workers, responding to the scaled questionnaire items based on the qualitative barriers identified at phase one.
RESULTS:
The most important barriers highlighted by workers were patients not identifying their illness as a problem for their children and patients denying that they had a mental health problem. All workers reported that it was part of their role to get involved with issues regarding their patient's children. In comparison to other workers, adult mental health workers reported time and resource limitations, as well as skill and knowledge deficits regarding parenting and working with children.
CONCLUSIONS:
The findings are discussed in relation to adult mental health policy and ongoing professional development, particularly for adult mental health workers.
Young carers and their Families
Becker, S., Aldridge, J., & Dearden, C.
(1998)
TONY WATERSTON, Consultant Paediatrician (Community Child Health)
Young Carers and their Families. By Becker S, Aldridge J, Dearden C. (Pp 144; paperback £14.99.) Blackwell Science, 1998. ISBN 0 632 04966 9 .
A day in the life of a child caring for a parent with multiple sclerosis.
Children caring for their parents or other children in the family are familiar to those who have worked in the third world but even with the UK's welfare service and safety net there are between 15 and 40 000 child carers nationwide. Oddly, just before starting to read this book I attended a meeting at a local school where we have begun a system of multiagency review of pupils not in school; the first young person discussed was caring for a parent and grandparent. We need to be more aware of this problem—hence this academic overview is welcomed.
Written by a trio of sociologists the book comes from a community and family based perspective but there is much of value to paediatricians. The authors first describe three perspectives on child carers: the impact of disability on the family, which is mainly medical; the children's rights angle; and the view of the disability rights movement. The first is viewed rather negatively as being narrow, but to me portrays the emotional and educational impact on the child of being a carer: "Every child needs to grow up in a stable environment characterised by consistent relationships. Many children are instead subjected to unending crises stemming from a parent's illness and repeated hospitalisation which provoke chronic uncertainty and unresolved grief that can be more stressful to a child than the loss of a parent through divorce or death." Thus the role of carer can restrict the child's education, can create physical burdens that their bodies are unprepared for, and confront them with a picture of suffering that has long term harm.
The children as carers literature tells why children take on care giving roles: a major factor is lone parenthood, another is reluctance of their father to take on caring activity; sadly the failure of services to recognise the needs of children and indeed sometimes to withdraw their provision is a notable factor. Inevitably, poverty is an ever present contributor. We learn of the involvement of young carers in intimate tasks; one girl cared for her father from the age of 9 following a stroke: "I did stop showering him at about 14 or 15, but recently that's started again. I didn't like showering him any more. You know, I thought 'I want my privacy, I'm sure he wants his', and I'm sure he doesn't like me having to shower him and I certainly don't like doing it. I suppose it was embarrassment. You know—it takes up so much time, it takes about an hour from start to finish, you know, get him in the shower and get him out and dressed."
Children carers have little power or status and families assume that what has begun voluntarily will become embedded in their habits, even though the young person would rather relinquish the role.
School attendance and performance is poor among young care givers; one study found that one in four were missing school. It is a poor reflection on school health services that support has not been provided to help these children back into school.
I found that the authors take a long time to make a few simple points. Having learned that caring is common and not beneficial for children, I wanted to know what I should do but there are no clear messages. The UN Convention on the Rights of the Child should underpin policy, but its impact in the UK has been limited. Only 11 of 71 local authorities defined these children as in need under the Children's Act. The Carers Act 1996 ensures that children may request to have their needs assessed but in a typical British Catch 22, the Act does not oblige departments to provide any services.
A useful type of support are the Young Carers' Projects with now over 100 in the UK. These raise awareness, develop supportive services, act on behalf of young carers to ensure that they receive appropriate benefits, and arrange leisure activities.
The authors identify the need to inform young carers on medical conditions, pointing out that this is woefully inadequate and that many children know so little about their parents' medical condition that they had invented their own version of diagnosis, prognosis, and consequences.
It saddened me that in the section on the role of professionals in identifying and assisting young carers, there is no mention of paediatricians. Is this because they are seen as purely medical, or because they have little contact with young carers? I suspect that it is the former, and that we need to be more outspoken about our wish to work across disciplines on behalf of children's health. We also need to look out for child carers in the families whom we see.
What I searched for was a child or young person's perspective, to try and understand some of the positive aspects of caring. I found little, perhaps because little has been done. Usually children have pretty good answers to difficult questions. Searching hard, I found a reference to a national survey of young people in which they thought that children of 10 should make their own bed and help with the washing up, children of 14 could take a part time job, young people at 16 could baby sit a child of 5, and 18 year olds could marry and vote. Caring for a parent was not mentioned.
So what might paediatricians take away from this book? First, an understanding that children who are carers are around and are being harmed; second, that they are often invisible to the agencies who should be helping; and third, that we have a role in highlighting this type of exploitation, as well as looking out for young carers among our patients. We would do well to network with the agencies locally who have young carers' projects. Only when I was writing this did I discover who they are in my district.
Young people and drugs among 15-24 year-olds: Analytical report
Flash Eurobarometer
(2008)
"A look at a community coming together to meet the needs of older adults: An evaluation of Neighbors Helping Neighbors program."
Trickey, R
(2008)
The purpose of this study was to evaluate the effectiveness of the Neighbors Helping Neighbors program. The study included surveys of 49 community-residing older adults and 26 community volunteers. Results showed that older adults perceived their quality of life to have improved after receiving social and environmental services; volunteers felt that their contributions to the program had made a significant difference in their community. This exploratory, descriptive study is only a beginning effort, but it holds great promise for suggesting ways to address the needs of the burgeoning aging population in our society.
"Anhörig 300" : Utvärdering av närståendestöd i kronobergs län 1999-2001 : "Jag vågar inte planera mer än en kvart i taget"
Albin, B., & Siwertsson, C.
(2002)
"Being in good hands": next of kin's perceptions of continuity of care in patients with heart failure
Östman, Malin, Bäck-Pettersson, Siv, Sandvik, Ann-Helén, Sundler, Annelie Johansson
(2019)
Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin ( n = 15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care, when they have access to care and treatment and when caregivers collaborate, regardless of healthcare is given by primary care, municipalities or specialist clinics. A sense of "being in good hands" sums up the need for continuous support, shared decision-making and seamless transitions between caregivers. It seems important that healthcare organisations safeguard effective and collaborative models. Moreover, professionals need to plan and perform healthcare in collaboration with patients and next of kin.
A study of the family burden of 150 family members of schizophrenic patients
Lowyck B, De Hert M, Peeters E, Wampers M, Gilis P, Peuskens J.
(2004)
Investigation into the family burden (FB) of schizophrenic patients has recently risen sharply. Nevertheless, to date there has been little consensus as to what factors influence the FB. The purpose of this study is to acquire a greater insight into the variables that influence the FB. The FB was measured with the interview for the family burden (Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatric. Groningen: Rijksuniversiteit). One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study. The results of our study show (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behaviour of the patient and FB, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year. Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behaviour of the patient. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
A support group programme for family members: an intervention during ongoing palliative care.
Henriksson, A.
(2012)
A support group programme for relatives during the late palliative phase
Henriksson, A. and B. Andershed
(2007)
This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.
A systematic and methodological review of interventions for young people experiencing alcohol-related harm
Calabria B, Shakeshaft AP, Havard A.
(2011)
Aims This review identified published studies evaluating interventions delivered outside educational settings, designed for young people with existing alcohol use problems, or who participate in behaviour that places them at high risk of alcohol-related harm, critiqued their methodology and identified opportunities for new interventions.
Methods A systematic search of the peer-reviewed literature interrogated 10 electronic databases using specific search strings, limited to 2005–09. No additional studies were found by a librarian searching other collections and clearing-houses, or by hand-searching review paper reference lists. The 1697 articles identified were reviewed against criteria from the Dictionary for the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies.
Results The methodological quality of existing studies is variable, and needs to be both more rigorous and more consistent. Particular problems include the lack of blinding outcome assessors, a reliance solely on self-report measures, highly variable consent and follow-up rates, infrequent use of intention-to-treat analyses and the absence of any economic or cost analyses. The range of interventions evaluated is currently limited to individually focused approaches, almost exclusively implemented in the United States.
Conclusions There is a great need for more intervention trials for young people at high risk of experiencing alcohol-related harm that are both methodologically rigorous and have a broader community focus, to complement the psychological interventions that currently dominate the relevant literature. Such trials would improve outcomes for high-risk young people themselves and would improve the evidence base, both in their own right and by facilitating future meta-analyses.
A systematic review of internet-based self-management interventions for youth with health conditions
Stinson, J., Wilson, R., Gill, N., Yamada, J., & Holt, J.
(2009)
Abstract
OBJECTIVE:
Critically appraise research evidence on effectiveness of internet self-management interventions on health outcomes in youth with health conditions.
METHODS:
Published studies of internet interventions in youth with health conditions were evaluated. Electronic searches were conducted in EBM Reviews-Cochrane Central Register of Controlled Trials, Medline, EMBASE, CINAHL and PsychINFO. Two reviewers independently selected articles for review and assessed methodological quality. Of 29 published articles on internet interventions; only nine met the inclusion criteria and were included in analysis.
RESULTS:
While outcomes varied greatly between studies, symptoms improved in internet interventions compared to control conditions in seven of nine studies. There was conflicting evidence regarding disease-specific knowledge and quality of life, and evidence was limited regarding decreases in health care utilization.
CONCLUSIONS:
There are the beginnings of an evidence base that self-management interventions delivered via the internet improve selected outcomes in certain childhood illnesses.
A systematic review of parenting in relation to the development of comorbidities and functional impairments in children with Attention-Deficit/ Hyperactivity Disorder (ADHD).
Deault, L. C.
(2010)
This review synthesizes recent research evidence regarding the parenting characteristics associated with families with children with Attention-Deficit/Hyperactivity Disorder (ADHD). ADHD is a complex, heterogeneous disorder with a range of genetic and environmental factors that contribute to its behavioral expression and different developmental trajectories. The current review adopts a developmental psychopathology perspective to conceptualize the risk and protective factors that might shape the developmental pathways of the disorder across different domains. Following from Johnston and Mash's review (Johnston and Mash, Clin Child Fam Psychol Rev 4:183-207, 2001), the present review systematically examines empirical studies from 2000-2008 that investigate parenting variables in relation to the development of children with ADHD, with a particular focus on the development of externalizing and internalizing comorbidities, as well as functional impairments in academic and social contexts. The most recent research evidence uses correlational designs to show that ADHD is associated with problematic family functioning, including greater stress within the family, higher rates of parental psychopathology and conflicted parent-child relationships, which appears to be exacerbated in children with comorbid oppositional and conduct problems. However, there is an absence of literature that considers the role that parents play in contributing to children's development in areas such as academic achievement and peer competence, as well as the development of internalizing difficulties. Future research should examine family factors that are associated with resilience in children with ADHD, using longitudinal designs that reflect the dynamic changes associated with a developmental psychopathology framework.
A therapeutic summer weekend camp for grieving children: supporting clinical practice through empirical evaluation
Farber, M.L.Z. & Sabatino, C.A.
(2007)
Through collaborative action-oriented community research, agency-based clinicians, and university-based researchers engaged in a two-year theory-driven evaluation of a therapeutic summer camp for grieving children. The evaluation examined the camp practice model and children's engagement in therapeutic camp activities and psychosocial functioning based on the camp staff and parental caregivers' assessments. The first year findings led to a synergistic decision-making process that strengthened one of camp therapeutic activities. The overall results reveal a high consistency among staff on assessments of engagement and psychosocial functioning, and parental caregivers' satisfaction with the camp. Limitations of research evaluation and implications for practice are considered.
A typology of caregiving situations and service use in family carers of older people in six European countries: The EUROFAMCARE study
Di Rosa M, Kofahl C, McKee K, Bień B, Lamura G, Prouskas C, et al.
(2011)
This paper presents the EUROFAMCARE study findings, examining a typology of care situations for family carers of older people, and the interplay of carers with social and health services. Despite the complexity of family caregiving situations across Europe, our analyses determined the existence of seven "caregiving situations," varying on a range of critical indicators. Our study also describes the availability and use of different support services for carers and care receivers, and carers' preferences for the characteristics of support services. Our findings have relevance for policy initiatives in Europe, where limited resources need to be more equitably distributed and services should be targeted to caregiving situations reflecting the greatest need, and organized to reflect the preferences of family carers.
A World of Their Own Making:Myth Ritual and the Quest for Family Values
Gillis, J.
(1996)
Our whole society may be obsessed with "family values," but as John Gillis points out in this entertaining and eye-opening book, most of our images of "home sweet home" are of very recent vintage. A World of Their Own Making questions our idealized notion of "The Family," a mind-set in which myth and symbol still hold sway. As the families we live with become more fragile, the symbolic families we live by become more powerful. Yet it is only by accepting the notion that our ritual, myths, and images must be open to perpetual revision that we can satisfy our human needs and changing circumstances.
AAC and literacy
Hetzroni, O. E.
(2004)
Purpose: To review current research on the use of augmentative and alternative communication (AAC) for prompting literacy in children with special educational needs. Method: Research studies relevant to emergent literacy and AAC use are reviewed. Studies focused on acquisition of literacy across various populations of children with special needs are reviewed. Results: Existing literature suggests that AAC may provide strategies and systems to compensate for impairments and disabilities of individuals with severe communication disorders. Conclusion: AAC may support literacy learning in children with special educational needs.
AAC and Scripting Activities to Facilitate Communication and Play
Taylor, R. and T. Iacono
(2003)
Many children with developmental disability have limited skills in both play and communication. In this study, the effects of a naturalistic intervention approach to play and symbolic communication was investigated within a single-subject multiple baseline design. The intervention involved scripting play activities and modelling vocabulary in speech and the augmentative and alternative communication (AAC) modality of sign. An additional intervention phase was introduced, wherein the AAC intervention was expanded to include an electronic communication device. The results indicated that modelling and scripted play activities resulted in increases in symbolic play, while changes in types of functional play were evident, while its frequency was somewhat erratic across baseline and intervention phases. Improvements in communication were more evident when a multimodal AAC approach was used in modelling than when sign was used alone. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
ABC for Parents: Pilot Study of a Universal 4-Session Program Shows Increased Parenting Skills, Self-efficacy and Child Well-Being.
Enebrink, P., Danneman, M., Benvestito Mattsson, V., Ulfsdotter, M., Jalling, C., & Lindberg, L.
(2014)
The aim of the present pilot study was to provide an initial evaluation of a brief, 4-session, universal health promoting parenting group program, the "ABC". We examined the effects of the program on improving parental strategies, parental self-efficacy, and child well-being. We also hypothesized that in a health promoting intervention implemented in the general population, increased parental self-efficacy and parental strategies would be associated with improvements in child well-being after 4 months. Parents living in 11 municipalities and local community agencies in Sweden enrolled in the project were invited to participate in the study. A repeated measurement within group design was used to assess the effects. In total, parents of 104 children aged 2–12 years participated in the ABC-study. Parental and child outcomes were evaluated before, after the intervention, and at a 4-month follow-up with parental self-report questionnaires. Paired t tests and ANOVA repeated measures showed statistically significant improvements of parental strategies (showing guidance, empathy/understanding, having rules/boundaries), parental self-efficacy (self-competence, knowledge/experience), and child well-being (emotional well-being, independence) from pre- to post measurement, with small to moderate effect sizes. Improvements were maintained at the 4-month follow-up, apart from changes in parental knowledge. University education and increased pre- to post improvements in self-efficacy predicted child emotional well-being at the 4-month follow-up. The findings suggest that the ABC-group intervention was effective in terms of improving child well-being, parental strategies and self-efficacy. This pilot study provides promising evidence for the ABC as a universal parenting program but further more rigorous evaluations are needed.
Acceptable and unacceptable risk: balancing every day risk by family members by older cognitively impaired adults who live alone
Cott S, Tierny M
(2013)
Abstract
For individuals providing care for older people the issue of risk is a well-established concern, especially in the context of the older person's declining functional abilities and cognitive skills. Recently in expert discussions of health care, the issue of risk has been subsumed under the discourse of patient safety with the assumption that risk is intrinsic to certain situations and therefore can be measured by professionals and ultimately prevented. Less attention has been paid to the risk perceptions of older persons and their families and friends. We undertook the study on which this article is based in Toronto, Ontario, Canada between 2005 and 2007. We used grounded theory to identify the process whereby family and friends recognise and balance risk of older persons with cognitive impairment who live alone. Twenty pairs of older adults with cognitive impairment and their primary family members or friends were interviewed using in-depth, semi-structured interviews. The model of acceptable and unacceptable risk began with family members' perceptions that the older person was living with an acceptable level of risk, but then noticing red flags that eventually led to the perception of unacceptable risk. They employed risk-balancing strategies such as making changes in the physical environment, increasing surveillance, becoming more involved in the older person's care or redefining their definitions of acceptable risk in order to return the perceived risk to an acceptable level. Meanings of risk were constantly redefined as new situations arose and risk-balancing strategies were implemented. Throughout family members constantly balanced the risks of physical harm with the risks of undermining the older person's independence and self-esteem.
Access to AAC: Present, past, and future
Higginbotham, D. J., Shane, H., Russell, S., & Caves, K.
(2007)
Historically, access in augmentative and alternative communication (AAC) has been conceptualized as the physical operation of AAC technologies; more recently, research and development in the cognitive and social sciences has helped to broaden the concept to include a range of human factors involved in the successful use of AAC technologies in social interactions. The goal of this article is to expand the current understanding of communication access by providing a conceptual framework for examining AAC access, evaluating recent scientific and technical advances in the areas of AAC, and discussing the challenges to accessing AAC technologies for a range of communication activities.
Access to AAC: Present, past, and future.
Higginbotham, D. J., Shane, H., Russell, S., & Caves, K.
(2007)
Historically, access in augmentative and alternative communication (AAC) has been conceptualized as the physical operation of AAC technologies; more recently, research and development in the cognitive and social sciences has helped to broaden the concept to include a range of human factors involved in the successful use of AAC technologies in social interactions. The goal of this article is to expand the current understanding of communication access by providing a conceptual framework for examining AAC access, evaluating recent scientific and technical advances in the areas of AAC, and discussing the challenges to accessing AAC technologies for a range of communication activities.
Access to augmentative and alternative communication: New technologies and clinical decision-making
Fager, S., Bardach, L., Russell, S., & Higginbotham, J.
(2012)
Children with severe physical impairments require a variety of access options to augmentative and alternative communication (AAC) and computer technology. Access technologies have continued to develop, allowing children with severe motor control impairments greater independence and access to communication. This article will highlight new advances in access technology, including eye and head tracking, scanning, and access to mainstream technology, as well as discuss future advances. Considerations for clinical decision-making and implementation of these technologies will be presented along with case illustrations.
According to need? : Predicting use of formal and informal care in a Swedish urban elderly population
Larsson, K.
(2004)
Avhandling
This dissertation studies factors that predict use of public eldercare, informal care, and purchase of private services in relation to an individual's needs, social network characteristics, and sociodemographic factors. A further purpose is to examine whether use of public eldercare is correlated to receipt of informal care and purchase of private services in the Swedish welfare state.The dissertation is based on the Kungsholmen Study, a population-based longitudinal study. Studies I–III used cross-sectional data from community-dwelling people aged 81-100 and examined (I) gender, (II) marital and parental status, and (III) dementia and depressive symptoms as predictors of use of home help. Study IV analyzed factors related to moving into institutional care and receipt of home help from 1994/96 to 2000.The majority of support provided to elders living in the community comes from informal sources, even among people living alone. There was considerable overlap between home help and informal care. When all sources of care were considered, childless individuals had comparatively lower odds of receiving care. Factors predicting use of public eldercare and informal care differed depending on whether or not elders coresided. No gender differences in use of formal and informal care were found when controlling for household composition. Living alone, dementia, need of help with household chores, and walking limitations increased the likelihood of using public eldercare. Coresidence, informal care from outside the household, and use of private services decreased the likelihood. Depressive symptoms increased the likelihood of receiving home help and institutionalization when using longitudinal data, but not in the cross-sectional studies. Educational level was of importance and interacted with several factors; persons with higher levels of education were advantaged. Very few people moved into institutional care without previously having received home help services. Essentially the same factors that predicted receipt of home help services also predicted institutionalization.
Action and embodiment within situated human interaction
Goodwin, C.
(2000)
A theory of action must come to terms with both the details of language use and the way in which the social, cultural, material and sequential structure of the environment where action occurs figure into its organization. In this paper it will be suggested that a primordial site for the analysis of human language, cognition, and action consists of a situation in which multiple participants are attempting to carry out courses of action in concert with each other through talk while attending to both the larger activities that their current actions are ambedded within, and relevant phenomena in their surround. Using as data video recordings of young girls playing hopscotch and archaeologists classifying color, it will be argued that human action is built throught the simultaneous deployment of a range of quite different kinds of semiotic resources. Talk itself contains multiple sign systems with alternative properties. Strips of talk gain their power as social action via their placement within larger sequential structures, encompassing activities, and participation frameworks constituted through displays of mutual orientation made by the actors' bodies. The body is used in a quite different way to perform gesture, again a class of phenomena that encompasses structurally different types of sign systems. Both talk and gesture can index, construe or treat as irrelevant, entities in the participants' surround. Moreover, material structure in the surround, such as graphic fields of various types, can provide semiotic structure without which the constitution of particular kinds of action being invoked through talk would be impossible. In brief it will be argued that the construction of action through talk within situated interaction is accomplished through the temporally unfolding juxtaposition of quite different kinds of semiotic resources, and that moreover through this process the human body is made publicly visible as the site for a range of structurally different kinds of displays implicated in the constitution of the actions of the moment.
Action and embodiment within situated human interaction
Goodwin, C.
(2000)
A theory of action must come to terms with both the details of language use and the way in which the social, cultural, material and sequential structure of the environment where action occurs figure into its organization. In this paper it will be suggested that a primordial site for the analysis of human language, cognition, and action consists of a situation in which multiple participants are attempting to carry out courses of action in concert with each other through talk while attending to both the larger activities that their current actions are ambedded within, and relevant phenomena in their surround. Using as data video recordings of young girls playing hopscotch and archaeologists classifying color, it will be argued that human action is built throught the simultaneous deployment of a range of quite different kinds of semiotic resources. Talk itself contains multiple sign systems with alternative properties. Strips of talk gain their power as social action via their placement within larger sequential structures, encompassing activities, and participation frameworks constituted through displays of mutual orientation made by the actors' bodies. The body is used in a quite different way to perform gesture, again a class of phenomena that encompasses structurally different types of sign systems. Both talk and gesture can index, construe or treat as irrelevant, entities in the participants' surround. Moreover, material structure in the surround, such as graphic fields of various types, can provide semiotic structure without which the constitution of particular kinds of action being invoked through talk would be impossible. In brief it will be argued that the construction of action through talk within situated interaction is accomplished through the temporally unfolding juxtaposition of quite different kinds of semiotic resources, and that moreover through this process the human body is made publicly visible as the site for a range of structurally different kinds of displays implicated in the constitution of the actions of the moment.
Action theory, disability and ICF
Nordenfelt L.
(2003)
Purpose: The purpose of this paper is to make a critical analysis of the conceptual platform of the recently introduced International Classification of Functioning, Disability and Health (ICF). Special attention is paid to the suggested definitions of the concepts of activity and participation. My argument intends to show that these definitions are not coherent. Methods: The theoretical platform of this paper is philosophical action theory. My argument makes particular use of the distinction between capacity and opportunity and shows that both concepts are applicable to all actions. Capacity and opportunity are distinguished from the actual performance of actions. The latter presupposes the existence of a will. On this conceptual basis follows an analysis of the distinction between activity and participation as conceived by the WHO in ICF. Conclusions: The main conclusion of my reasoning is that the notions of activity and participation in ICF partly rest on confusion between capacity for action and the actual performance of an action. If my conclusion is sound this has far-reaching consequences for the application of the ICF in the practice of rehabilitation. My diagnosis therefore is that the conceptual framework of ICF is in great need of a strict action – theoretic reconstruction.
Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams
Klarare A., Rasmussen BH., Fossum B., Hansson J., Fürst CJ., Lundh Hagelin C.
(2018)
Abstract
Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregiversexperienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.
Activity and participation in home rehabilitation: older people's and family members' perspectives
Randström KB, Kenneth A, Svedlund M, Paulson M.
(2013)
Abstract
OBJECTIVE: To explore the experiences of older people and their supporting family members in relation to home rehabilitation, with a focus on activity and participation.
METHODS: Qualitative interviews were carried out with 6 older people and 6 family members at 1 and 6 months after the older person's discharge to their home. Qualitative content analysis of the data was carried out. The International Classification of Functioning, Disability and Health provides a guiding framework for rehabilitation.
RESULTS: Informants' experiences of home rehabilitation contributed to the formation of 6 categories: (i) living with a frail body; (ii) striving for well-being in daily life; (iii) being close at hand; (iv) feeling dependent in daily life; (v) struggling to carry on; and (vi) striving to be at home.
CONCLUSION: Older people's goals were to return to daily routines and to perform meaningful activities without feeling dependent on other people. Family members' participation was crucial. Psychosocial support and autonomy were essential for facilitating activity and participation. Healthcare professionals should consider each individual's unique experiences along with the significance of being at home
Activity participation of children with complex communication needs, physical disabilities and typically-developing peers
Raghavendra P, Virgo R, Olsson C, Connell T, Lane AE.
(2011)
Objective: To describe and compare the context of participation of children with physical disabilities and complex communication needs (Group CCN) in out-of-school activities with children with physical disabilities only (Group PD) and typically-developing peers (Group TD).
Method: A cross-sectional, matched, multi-group design was used. Thirty-nine participants between 10–15 years of age were administered the Children's Assessment of Participation and Enjoyment.
Results: Kruskall-Wallis analyses revealed that there were significant differences among the three groups for overall location, enjoyment of the activities and with whom they did the social and self-improvement activities with. Mean trends showed that Group CCN participated in activities closer to home rather than in the community, were restricted in social participation and reported higher levels of enjoyment in activity participation than the other two groups.
Conclusions: Group CCN appeared to experience differences in participation when compared to peers with and without disability.
Activity perspectives on VOCA-mediated conversations
Rydeman, B. & Hedvall, P.O.
(2013)
Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members
Möllerberg, Marie-Louise; Årestedt, Kristofer; Sandgren, Anna; Benzein, Eva; Swahnberg, Katarina
(2020)
Objectives: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.Methods: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.Results: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61).Significance Of Results: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.
Adaptation and validation of the VOICES (SF) questionnaire – for evaluation of end‐of‐life care in Sweden.
O'Sullivan, Anna; Öhlen, Joakim; Alvariza, Anette; Håkanson, Cecilia
(2018)
Abstract:
Objectives: Instruments for evaluating end‐of‐life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end‐of‐life care in Sweden. The VOICES (SF) [Views of Informal Carers – Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member. Methods: This study was performed based on translation and back translation, cross‐cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life‐limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording. Results: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable. Significance of results: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross‐national comparisons between different healthcare places and organisations.
Adaptation of the preventive intervention program for depression for use with predominantly low-income Latino families
D’Angelo, E.J., Llerena-Ouinn, R., Shapiro, R., Colon, F., Rodriquez, P., Gallagher, K., & Beardslee, WR.
(2009)
This paper describes the process for and safety/feasibility of adapting the Beardslee Preventive Intervention Program for Depression for use with predominantly low income, Latino families. Utilizing a Stage I model for protocol development, the adaptation involved literature review, focus groups, pilot testing of the adapted manual, and open trial of the adapted intervention with 9 families experiencing maternal depression. Adaptations included conducting the intervention in either Spanish or English, expanding the intervention to include the contextual experience of Latino families in the United States with special attention to cultural metaphors, and using a strength-based, family-centered approach. The families completed preintervention measures for maternal depression, child behavioral difficulties, global functioning, life stresses, and an interview that included questions about acculturative stressors, resiliency, and family awareness of parental depression. The postintervention interview focused on satisfaction, distress, benefits of the adapted intervention, and therapeutic alliance. The results revealed that the adaptation was nonstressful, perceived as helpful by family members, had effects that seem to be similar to the original intervention, and the preventionists could maintain fidelity to the revised manual. The therapeutic alliance with the preventionists was experienced as quite positive by the mothers. A case example illustrates how the intervention was adapted.
Adde Adhd : bästis med fienden
Eva Edberg
(2017)
Hallå! Det är jag som är Adde. Jag är inlåst här i skåpet. Egentligen skulle jag ha spelat mitt livs viktigaste tennismatch nu. Kan du snälla släppa ut mig? Okej, jag ska vara ärlig. Jag har bara en vän och det är tennisbollen, alla andra verkar bli mina fiender. Men med hjälp av Adhd-killen inom mig kan jag bli din bästa vän. Absolut. När du öppnar får du se ...
Detta är en stormande feelgood-roman för unga. Med humor och allvar söker Adde sin nya identitet med en diagnos. En hink tennisbollar kastas upp, och ned ramlar ett bollhav av äventyr, med poliser, kraschad vänskap och en mystisk vaktmästare i kjol. Genom sporten får Adde vara med om ett spel där det viktigaste av allt är att vinna ? sig själv!
Addressing Substance Abuse Treatment Needs of Parents Involved with the Child Welfare System.
Oliveros A, Kaufman J.
(2011)
The goal of this paper is to synthesize available data to help guide policy and programmatic initiatives for families with substance abuse problems that are involved with the child welfare system, and identify gaps in the research base needed to further refine practices in this area. To date, Family Treatment Drug Court and newly developed home-based substance abuse treatment interventions appear the most effective at improving substance abuse treatment initiation and completion in child welfare populations. Research is needed to compare the efficacy of these two approaches, and examine cost and child well-being indicators in addition to substance abuse treatment and child welfare outcomes.
Keywords: Substance Abuse, Child Welfare, Treatment
ADHD in Parents
Weiss, M., Hechtman, L., Weiss, G., & Jellinek, M. S.
(2000)
ADHD in Swedish 3- to 7-year-old children
Kadesjö C, Kadesjö B, Hägglöf B, Gillberg C.
(2001)
Objective: To study characteristics of attention-deficit/hyperactivity disorder (ADHD) in a representative group of clinically impaired young children in Sweden with the disorder. Method: One hundred thirty-one children with ADHD (aged 3–7 years) were examined, and their parents were interviewed. Independent parent questionnaire data (Child Behavior Checklist, ADHD Rating Scale-IV, Conners) were collected. For comparison 131 children without ADHD were matched for age, gender, parents' marital status, child's adoption status, and social class. Results: Children with ADHD had extremely high ADHD symptom levels—on average four to eight times higher than the comparison group. Sociodemographic correlates of ADHD symptoms were more pronounced in parent questionnaire data than in parent interview data, underscoring the importance of diagnostic interview when dealing with clinical issues. Very few of the children with ADHD (6%) appeared "normal" with regard to attention/activity level at clinical examination.Conclusions: Clinic children with a diagnosis of DSMIV ADHD have typical and impairing symptoms already before starting school. The variance of ADHD in this age group appears to be accounted for by primary psychosocial factors only to a limited degree. It would seem reasonable to establish supportive and treatment measures for these young children so that the psychosocial and academic problems shown by so many individuals with ADHD later in their development might be reduced.
Adjö Herr Muffin
Ulf Nilsson, Anna-Clara Tidholm
(2003)
Herr Muffin är ett marsvin som nu är gammal, trött och har ont i magen. Han tänker tillbaka på sitt liv och hur bra han har haft det. Han har haft fru och sex lurviga ungar, fått mycket gurka och hö. En dag ligger ett brev i hans postlåda och i brevet står det "Jag är ledsen för att pappa säger att när ett marsvin är gammal kan det plötsligt dö...." Boken om Herr Muffin berättar om ålderdom och död på ett fint och stillsamt sätt. En bilderbok som passar barn från 3 år.
Adolescence and borderline behavior—Between personality development and personality disorder
Streeck-Fischer, A.
(2013)
Background: In recent years, an increasing interest in personality disorders in childhood and adolescence has been observed. This is partly due to recent findings of temperament, personality and neurobiological research. Method: This article reviews the history of the concept of borderline conditions in children and adolescents, and presents recent evidence from developmental psychology and neurobiology to support the diagnosis in adolescents as a disorder of development. An overview of treatment based on the decades-long experience with these patients at the Tiefenbrunn Clinic in Germany is described. Results: While the term personality disorder implies enduring traits, the evidence suggests that it is relatively unstable in adults as well as adolescents. Concerns about labeling adolescents with a presumably lifelong condition have hampered research on pathogenesis and treatment. Nevertheless, some adolescents with severe impairments in functioning do meet adult criteria for BPD, and do respond to the tailored treatment approaches that have been developed for them. Conclusions: The psychopathology of adolescents with BPD is probably a result of the interaction of the adolescent developmental process and defects in attachment and mentalization similar to those in adults with BPD. The term "developmental borderline personality disorder" is suggested to reflect the fluidity of this condition. Appropriate intervention requires a comprehensive multimodal approach in which individual therapy takes place within a protective framework of boundaries and limits.
Adolescent alcohol expectancies in relation to personal and parental drinking patterns
Brown SA, Creamer VA, Stetson BA.
(1987)
Increased expectations of positive effects of alcohol have been associated with severity of drinking across a variety of abusing and nonabusing adult populations. Although alcohol expectancies have been examined among high school adolescents, no study has examined expectancies of identified adolescent abusers in treatment. This study investigated whether adolescent alcohol abusers in treatment expect significantly more reinforcement from alcohol than do nonabusing peers and whether expectancies vary as a function of exposure to parental alcohol abuse. The adolescent version of the Alcohol Expectancy Questionnaire (Christiansen, Goldman, & Inn, 1982) was completed by 116 abusing and nonabusing adolescents. Results indicate that adolescent alcohol abusers expect significantly more reinforcement from alcohol than do demographically comparable nonabusing peers. Adolescents with an alcohol-abusing parent reported expecting more cognitive and motor enhancement from drinking than did adolescents without a family history of abuse. Thus, both personal alcohol use and parental alcohol use are related to adolescent alcohol expectancies. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Adolescent drug abuse: helping families survive. International journal of mental health nursing
Usher K, Jackson D, O'Brien L.
(2005)
Drug use and abuse carries risk in people of all ages. However, adolescents are particularly vulnerable to substance misuse. Adolescent drug use continues to be an area of concern with a number of adolescents developing problems associated with the use of various drugs. Negative sequelae associated with adolescent drug use include areas such as schooling, health, and family relationships. Difficulties with the legal system, schooling, or within the family are commonly the triggers for recognition of substance misuse problems in a young person. However, problems are usually well-established before they are recognized. The challenge of dealing with these problems will fall on families, particularly parents. This is a crisis for families, and ongoing support is needed if they are to overcome the challenges. Health workers (including nurses) are well-positioned to support families who are dealing with adolescent drug problems. In this paper we propose the adoption of a strengths approach as a strategy for developing resilience in families.
Adolescent mothers: support needs, resources, and support-education interventions
LETOURNEAU, N. L., STEWART, M. J. & BARNFATHER, A. K.
(2004)
Adolescent mothers are prone to live in poor conditions, lack adequate financial resources, suffer high stress, encounter family instability, and have limited educational opportunities. These factors contribute to inadequate parent-child interactions and diminished infant development. Social support can promote successful adaptation for adolescent mothers and their children. This review article describes the support needs and challenges faced by adolescent parents and their children, the support resources available to and accessed by adolescent parents, and existing support-education intervention studies, to provide directions for future research. Relevant research published between January 1982 and February 2003 was obtained from online database indices and retrieved article bibliographies. Frequently encountered problems included small sample sizes and attrition, lack of suitable comparison groups, and measurement inconsistencies. When planning support-education interventions, content, duration, intensity, mode, level, intervention agents, and targets should be considered. Future research can address these challenges.
Adolescent’s perceptions of social support after the death of a parent
Gray, R.E.
(1989)
Adsolescent sexual behavior in two ethnic minority samples: The role of family variables
Miller KS, Forehand R, Kotchick BA.
(1999)
Examined family structural variables (family income, parental education, and maternal marital status) and process variables (maternal monitoring, mother–adolescent general communication, mother–adolescent sexual communication, and maternal attitudes about adolescent sexual behavior) as predictors of indices of adolescent sexual behavior and risk due to sexual behavior in 907 Black and Hispanic families from Montgomery, Alabama; New York City; and San Juan, Puerto Rico. Mean ages of mother and daughter for the total sample were 40.27 yrs and 15.30 yrs, respectively. The findings indicate that family-structure variables failed to predict adolescent sexual behavior. In contrast, each of 3 family process variables predicted multiple indices of adolescent sexual behavior and risk due to sexual behavior. Neither adolescent gender nor ethnicity qualified the findings. Differences did emerge among the 3 locations and by reporter (adolescent or mother) of the family process variables.
Adult attachment in the context of refugee traumatisation: the impact of organized violence and forced separation on parental states of mind regarding attachment
De Haene, L., Grietens, H., & Verschueren, K.
(2010)
Starting from an outline of the refugee experience as a process of cumulative traumatisation, we review research literature on mental health outcomes in refugees. Next, an integration of findings on relational processes in refugee families documents the role of the family unit as a key interactive context patterning the impact of sequential traumatisation. Relating these trauma- and migration-specific family processes to their central dimension of provision or disruption of emotional availability in a context of chronic adversity, we aim to explore the development of unresolved and insecure parental states of mind regarding attachment during forced migration. Starting the research report, a method discussion on the administration of 11 Adult Attachment Interviews with adult refugees as part of an explorative multiple case study integrates deontological and technical reflections on the use of the Adult Attachment Interview in a context of ongoing traumatisation. The paper then presents findings on adult attachment in refugees and highlights representational processes involved in the potential disruption of caregiver availability during refugee traumatisation.
Adult Attachment Interview
GEORGE, C., KAPLAN, N. & MAIN, M.
(1985)
Alcohol use and stress in university freshmen: a comparative intervention study of two universities
Andersson, C.
(2009)
doktorsavhandling
Starting university is associated with major academic, personal and social opportunities. For many people, university entrance is also associated with increased stress and alcohol consumption. At the start of the autumn term 2002, all students entering educational programmes at two comparable middle-sized Swedish universities were invited to participate in a comparative intervention study. This included both primary and secondary interventions targeting hazardous drinking and stress. The overall aim was to improve alcohol habits and stress patterns in university freshmen at an intervention university in comparison with a control university.
A total of 2,032 (72%) freshmen responded to the baseline assessment. Half of them scored above traditional AUDIT cut-off levels for hazardous alcohol use. Factors associated with hazardous use were age below 26, male gender, family history of alcohol problems, and not being in a serious relationship. The Arnetz and Hasson Stress Questionnaire was evaluated and used to study a selection of freshmen at high riskof stress. It was easy to use and offered sufficient internal consistency and construct validity. In the freshman year, 517 students (25%) dropped out from university education. A multivariate analysis established that high stress and university setting was associated with dropout from university studies, while symptoms of depression and anxiety as well as hazardous drinking were not.
Outcome was analysed in students remaining at university at one-year follow-up. The primary interventions offered to freshmen at the intervention university reduced alcohol expectancies and mental symptoms compared with freshmen at the control university. Secondary stress interventions were effective in reducing mental symptoms and alcohol expectancies. Secondary alcohol interventions were effective in reducing AUDIT scores, alcohol expectancies, estimated blood alcohol concentrations, as well as stress and mental symptoms.
In conclusion, both primary and secondary alcohol and stress interventions have one-year effects in university freshmen and could be used in university settings.
Alcohol use during pregnancy in Canada: How policy moments can create opportunities for promoting women’s health
Poole, N & Greaves, L.
(2013)
This article addresses the challenge of igniting action on health promotion for women in Canada with respect to alcohol use during pregnancy. We illustrate that accelerated action on health promotion for women that engages multiple levels of players, women-centred and harm-reduction frameworks and a gendered approach to understanding women's lives can be achieved when the right policy moment occurs. We illustrate this by describing the opportunity afforded by the Olympic Games in 2010, where the BC government used the Games to encourage action on women's health promotion and the prevention of alcohol use in pregnancy. We suggest that the 2011 announcement of new low-risk drinking guidelines that recommend lower intake of alcohol for women than for men offers another, to date unused, opportunity.
Alcohol use in pregnancy: prevalence and predictors in the longitudinal study of Australian Children
Hutchinson, D., Moore, E.A., Breen, C., Burns, L., & Mattick, R.P.
(2013)
INTRODUCTION AND AIMS:
This study aimed to estimate the prevalence and describe the patterns of alcohol use during pregnancy among Australian mothers. The study also aimed to examine the characteristics associated with alcohol use in pregnancy.
DESIGN AND METHODS:
Data comprised two representative samples of families (infant cohort = 5107 parents of 0- to 1-year-olds; child cohort = 4983 parents of 4- to 5-year-olds) from the 2005 Longitudinal Study of Australian Children.
RESULTS:
Alcohol use in pregnancy was reported by 37.6% of mothers of infants aged 0-1 years and 27.6% of mothers of children aged 4-5 years. The majority of women reported low level/occasional use of alcohol but, when extrapolated to population level, this equates to 131,250 children in these two age groups exposed to alcohol in utero, with over 1000 children exposed to alcohol most days and an estimated 671 infants exposed to three or more drinks per occasion. Among mothers of infants, alcohol use in pregnancy was associated with increasing maternal age, higher education, greater economic advantage and fewer physical health problems in pregnancy. Among mothers of children, maternal drinking in pregnancy was associated with increasing maternal age and smoking in pregnancy.
DISCUSSION AND CONCLUSIONS:
Alcohol use during pregnancy is common with around one-third of all mothers reporting use. Most women reported only occasional use, and among those who were asked, consumed one standard drink on average per occasion. Significant numbers were exposed to three or more drinks on one occasion or to alcohol most days while in utero. National guidelines recommend abstinence as no 'safe' threshold has been determined. Public health campaigns are needed to educate pregnant women regarding national guidelines.
Alcohol, Drugs and the Family: Results from a Long-Running Research Programme within the UK
Velleman R, Templeton L.
(2003)
This article will outline the main strands of the UK-based Alcohol, Drugs and the Family (ADF) research programme. This programme has examined the impact of substance misuse problems on children, spouses, and families, both in the UK and elsewhere, especially in urban Mexico City and in Australia amongst both urban and rural Aborigine populations. This article will outline the main theoretical perspective that we have developed from this work (the stress-strain-coping-support model). It will outline some of the key findings of this programme, and address some of the key universals that we have observed across various cultures. It will end by describing current research, including the testing of brief interventions being delivered through primary care to family members to enable them to cope better with the problems which family substance misuse causes.
Alcoholism/Addiction as a Chronic Disease
White WL, Boyle M, Loveland D.
(2002)
Although characterized as a chronic disease for more than 200 years, severe and persistent alcohol and other drug (AOD) problems have been treated primarily in self-contained, acute episodes of care. Recent calls for a shift from this acute treatment model to a sustained recovery management model will require rethinking the natural history of AOD disorders; pioneering new treatment and recovery support technologies; restructuring the funding of treatment services; redefining the service relationship; and altering methods of service evaluation. Recovery-oriented systems of care could offer many advantages over the current model of serial episodes of acute care, but such systems will bring with them new pitfalls in the personal and cultural management of alcohol and other drug problems.
Alcohol-related disorders in first and second generation immigrants in Sweden
Hjern A, Allebeck, P
(2004)
Alkoholrapporten 2017 Tema: Alkohol, föräldrar och barn
Systembolaget
(2017)
Allmänna råd från Socialstyrelsen 1994:1, LSS – lagen om stöd och service till vissa funktionshindrade
Socialstyrelsen
(1994)
An exploration of different models of multi-agency key worker services for disabled children: Effectiveness and costs. Research report 656.
Greco, V., Sloper, P., Webb, R., & Beecham, J.
(2005)
A key worker has been described as a named person whom the family can approach
for advice about, and practical help with, any problem related to the disabled child.
Provision of 'key workers' or 'care coordinators' for disabled children and their families, working across health, education and social services, has often been recommended in policy guidance, most recently in the Children's National Service Framework. Up to now, research has shown that less than a third of families with severely disabled children have a key worker, but compared to those who do not have a key worker, those who do show benefits in terms of relationships with and access to services and overall quality of life. However, as more key worker services have been developed, different models of service and ways of working have proliferated and there has been no research on the outcomes for families of different types of services. This study aimed to explore the effectiveness of different models of multi-agency key worker services.
An exploratory study: expanding the concept of play for children with severe cerebral palsy.
Graham N, Truman J, Holgate H.
(2014)
Introduction: Play is essential to a child's development, and is a dominating component of a child's life. Forming part of a broader study aiming to explore what parents of children with cerebral palsy understand by play, and its use in therapy and home programmes, this research article focuses on how parents expand their concept of play for their children.
Method: A qualitative methodology and interpretive descriptive approach were taken. Following ethical approval, seven parents were recruited, completed an interview, and provided a contextual information sheet. An interpretive descriptive approach to analysis allowed exploration of this data.
Findings: Parents appeared to expand their concept of play beyond the conventional idea of play for typically developing children, seemingly as a result of the limitations placed on each child's play through their physical disability. Parents discussions revealed three subthemes: vicarious play, play through communication, and therapy in play.
Conclusion: Occupational therapists can help parents to understand how the concept of play can be expanded to involve ideas such as vicarious play and communication as play. Parents may then feel more comfortable in allowing their children to experience play as a primary occupation, in a less conventional way.
An integrated review of interventions to improve psychological outcomes in caregivers of patients with heart failure
Evangelista LS, Strömberg A, Dionne-Odom JN.
(2016)
PURPOSE OF REVIEW: This article examines interventions aimed at improving
psychological outcomes (e.g., caregiver burden, quality of life, anxiety,
depression, perceived control, stress mastery, caregiver confidence and
preparedness, and caregiver mastery) in family caregivers of patients with heart
failure.
RECENT FINDINGS: Eight studies meeting the inclusion criteria were included in
the review. The most common intervention involved psychoeducation facilitated by
a nurse (6/8) and supplemented with a combination of follow-up face-to-face
sessions (2/6), home visits (2/6), telephone calls (3/6), and telemonitoring
(3/6). Two studies used a support group intervention of four to six sessions.
Half of the interventions reported a significant effect on one or more primary
outcomes, including caregiver burden (n = 4), depressive symptoms (n = 1), stress
mastery (n = 1), caregiver confidence and preparedness (n = 1), and caregiver
mastery (n = 1).
SUMMARY: Compared with dementia and cancer family caregiving, few interventions
have been evaluated in caregivers of patients with heart failure. Of the existing
interventions identified in this review, considerable variability was observed in
aims, intervention content, delivery methods, duration, intensity, methodological
rigor, outcomes, and effects. Given this current state of the science, direct
comparison of heart failure caregiver interventions and recommendations for
clinical practice are premature. Thus, research priority is strongly warranted
for intervention development and testing to enhance heart failure caregiver
support and education.
An international comparison of patterns of participation in leisure activities for children with and without disabilities in Sweden, Norway and the Netherlands
Ullenhag A, Bult MK, Nyquist A, Ketelaar M, Jahnsen R, Krumlinde-Sundholm L, et al.
(2012)
PURPOSE:
To investigate whether there are differences in participation in leisure activities between children with and without disabilities in Sweden, Norway and the Netherlands and how much personal and environmental factors explain leisure performance.
METHODS:
In a cross-sectional analytic design, the Children's Assessment of Participation and Enjoyment, CAPE, was performed with 278 children with disabilities and 599 children without disabilities aged 6-17 years. A one-way between-groups ANOVA explored the differences in participation between the countries. Hierarchical multiple regression analysis assessed if age, gender, educational level, living area and country of residence explained the variance in participation.
RESULTS:
Scandinavian children with disabilities participated in more activities with higher frequency compared to Dutch children. The strongest predictor was country of residence. For children without disabilities, differences existed in informal activities, the strongest predictor was gender.
CONCLUSION:
Differences in school- and support systems between the countries seem to influence patterns of participation, affecting children with disabilities most.
An Internet-based videoconferencing system for supporting frail elderly people and their carers
Savolainen, L., Hanson, E., Magnusson, L. & Gustavsson, T.
(2008)
Abstract
The ACTION project uses information and communication technology to support frail elderly people and their family carers. The aims are to enhance their quality of life, independence and preparedness and to break social isolation. A videoconferencing system, connecting homes and a call centre, was used in a pilot study in 1997 - 2002. A re-designed system was brought into use in late 2004 and over 60 new units were introduced during the first six months. The new system was evaluated with an interview study and by data logging. Eight family users and four professional carers were interviewed. The family users had used the videophone at least six times and they had had the equipment at home for at least two months. The average number of initiated calls per user was 5.7 per month and the average call time per user was 40 min per month. Seven of the users (88%) reported that the system very much reduced their sense of loneliness and isolation. The results of the evaluation were encouraging. There were several frequent users of videoconferencing. System quality was acceptable although a shorter audio delay would be desirable. The system was used regularly by the participants and it fulfilled its purpose.
An intervention for parents with AIDS and their adolescent children
Rotheram-Borus MJ, Lee MB, Gwadz M, Draimin B.
(2001)
OBJECTIVES: This study evaluated an intervention designed to improve behavioral and mental health outcomes among adolescents and their parents with AIDS. METHODS: Parents with AIDS (n = 307) and their adolescent children (n = 412) were randomly assigned to an intensive intervention or a standard care control condition. Ninety-five percent of subjects were reassessed at least once annually over 2 years. RESULTS: Adolescents in the intensive intervention condition reported significantly lower levels of emotional distress, of multiple problem behaviors, of conduct problems, and of family-related stressors and higher levels of self-esteem than adolescents in the standard care condition. Parents with AIDS in the intervention condition also reported significantly lower levels of emotional distress and multiple problem behaviors. Coping style, levels of disclosure regarding serostatus, and formation of legal custody plans were similar across intervention conditions. CONCLUSIONS: Interventions can reduce the long-term impact of parents' HIV status on themselves and their children
An intervention for parents with AIDS and their adolescent children
Rotheram-Borus, M.J., Lee, M.B., Gwadz, M., & Draimin B.
(2001)
Abstract
OBJECTIVES:
This study evaluated an intervention designed to improve behavioral and mental health outcomes among adolescents and their parents with AIDS.
METHODS:
Parents with AIDS (n = 307) and their adolescent children (n = 412) were randomly assigned to an intensive intervention or a standard care control condition. Ninety-five percent of subjects were reassessed at least once annually over 2 years.
RESULTS:
Adolescents in the intensive intervention condition reported significantly lower levels of emotional distress, of multiple problem behaviors, of conduct problems, and of family-related stressors and higher levels of self-esteem than adolescents in the standard care condition. Parents with AIDS in the intervention condition also reported significantly lower levels of emotional distress and multiple problem behaviors. Coping style, levels of disclosure regarding serostatus, and formation of legal custody plans were similar across intervention conditions.
CONCLUSIONS:
Interventions can reduce the long-term impact of parents' HIV status on themselves and their children.
An intervention program for university students who have parents with alcohol problems: a randomized controlled trial
Hansson, H., Rundberg, J., Zetterlind, U., Johnsson, KO., & Berglund, M.
(2006)
Aim: To study the effects of alcohol and coping intervention among University students who have parents with alcohol problems. Methods: A total of 82 university students (56 women and 22 men, average age 25) with at least one parent with alcohol problems were included. The students were randomly assigned to one of three programs: (i) alcohol intervention program, (ii) coping intervention program, and (iii) combination program. All programs were manual based and individually implemented during two 2-h sessions, 4 weeks apart. This assessment contained both a face-to-face interview and six self-completion questionnaires; AUDIT, SIP, EBAC, coping with parents' abuse questionnaire, SCL-90 and ISSI. Follow-up interviews were conducted after 1 year. Results: All participants finished the baseline assessment, accepted and completed the intervention, while 95% of the students completed the 12-month follow-up assessment. The two groups that received alcohol intervention improved their drinking pattern significantly more than the group that did not receive alcohol intervention [change of standardized scores -0.27 (CI -0.53 to -0.03)]. The groups receiving coping intervention did not differ from the group not receiving coping intervention concerning their ability to cope with their parents' alcohol problems. Nor did they differ regarding changes in their own mental health or in their social interaction capacity. Conclusion: The intervention improved drinking patterns in adult children of alcoholics.
An inventory for measuring depression
Beck A, Ward C, Mendelson M, Mock J, Erbauch J.
(1961)
An investigation into parent perceptions of the needs of siblings of children with cancer
Sidhu, Reena, Passmore, Anne, Baker, D.
(2005)
Although more is understood about childhood cancer's impact on the often forgotten siblings in the family, developing empirically tested interventions that support positive health outcomes is only just emerging. As family support is of key importance in sibling adjustment, further knowledge about their needs is crucial to the development of effective interventions. This investigation focused on examining parental perceptions regarding the concerns and issues for siblings of children with cancer and explored what support is helpful. Focus group methods were used to gather the data with probe questions developed from the literature and from clinical experience. Emergent topics generated were further analyzed using content analysis with 3 major topics identified: the universality of losses arising from the illness experience, behavioral challenges and adaptation, and parent-sibling communication. Parents also discussed helpful interventions. These are described and discussed in relation to the literature. The information obtained will contribute to developing interventions for siblings, specifically to produce a protocol for a therapeutic peer-support camp.
An outcome study of a time-limited group intervention program for bereaved children
Wilson, D. L.
(1995)
Akad. Avhandling
Bereaved children are a hidden population. Although little is known about the experience of loss, grief and mourning in children, the literature suggested that, without successful intervention, irreparable harm to the child's cognitive, affective and behavioral functioning can result (Arthur & Kemme, 1964; Bendiksen & Roberts, 1975; Birtchnell, 1969; Bowlby, 1961; Brown, 1961; Gray, 1988). The present study evaluated treatment outcome of a time-limited, Children's Bereavement Program as measured by the Louisville Behavior Checklist, and the Revised-Children's Manifest Anxiety Scale. Subjects included children between the ages of 4-12 who lost a significant other to death. A pretest, posttest, follow-up, repeated measure, control group design (Campbell & Stanley, 1963) was used in the study. It was predicted that, compared to the controls, the experimental group would evidence at posttest and follow-up a reduction in grief induced anxiety and behavioral problems as a result of treatment. No significant differences were found between experimental and control groups on either instrument. However, significant differences were found for combined groups across time periods on ten out of fourteen subscales of the Louisville Behavior Checklist. Findings suggested that both the experimental and control groups evidenced a lessening of reported symptoms related to grieving at posttest and follow-up.
Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: a cross-sectional cohort study
Fagerström, Cecilia; Elmståhl, Sölve; Wranker, Lena Sandin
(2020)
Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.
Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: a cross-sectional cohort study
Fagerström, Cecilia; Elmståhl, Sölve; Wranker, Lena Sandin
(2020)
Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.
Anhörig - omsorg och stöd
Johansson, L.
(2007)
Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.
Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.
Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre
Anhöriga som vårdar eller stödjer närstående äldre personer : underlag till en nationell strategi
Socialstyrelsen
(2020)
Den 1 juli 2009 infördes en ändring i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, som tydliggör att socialtjänsten ska erbjuda stöd för att underlätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en person med funktionsnedsättning. Anhörigstödet ska kännetecknas av individualisering, flexibilitet och kvalitet. Regionerna saknar motsvarande skyldighet, men hälso- och sjukvården har ett ansvar att identifiera och arbeta hälsofrämjande och förebyggande med personer eller grupper som riskerar att drabbas av ohälsa. Eftersom många anhöriga riskerar just detta har regeringen tidigare markerat att de omfattas av detta ansvar. Denna rapport redovisar ett regeringsuppdrag till Socialstyrelsen att lämna ett samlat underlag för en bred nationell strategi för anhöriga som vårdar eller stödjer närstående äldre personer. Syftet med den kommande strategin är att utifrån bästa tillgängliga kunskap bidra till att stöd till anhöriga som vårdar eller stödjer en närstående äldre är tillgängligt och utformat efter behov
Anhöriga till personer med psykisk sjukdom eller funktionsnedsättning - en resurs i behov av stöd. Fokus på anhöriga till äldre nr 17
Ewertzon, M.
(2010)
Anhöriga som vårdar eller stödjer en närstående ska erbjudas stöd, enligt en ny bestämmelse i socialtjänstlagen. Bestämmelsen innebär att många kommuner behöver uppmärksamma målgrupper som de inte har uppmärksammat tidigare. En av dessa målgrupper är anhöriga till personer med långvarig psykisk sjukdom eller psykisk funktionsnedsättning. Mats Ewertzon – doktorand vid Örebro universitet och adjunkt vid Högskolan Dalarna – beskriver här de anhörigas situation och resonerar
kring hur stödet kan utformas. Artikeln är den första av två som handlar om stöd till målgruppen
Anhöriga till psykiskt störda och deras uppfattningar om psykopedagogisk undervisning
Fridenberger, Ann-Charlotte & Johansson, Gun
(1999)
Detta är en studie över anhöriga och närståendes uppfattningar om psyko-pedagogisk anhörigundervisning som genomförts vid Psykosvårdens utrednings- och behandlingsenhet, Psykiatriska kliniken Örebro.
Anhöriga till vuxna personer med psykisk ohälsa: En kunskapsöversikt om betydelsen av stöd. Kunskapsöversikt 2015:1
Ewertzon, M.
(2015)
Att vara anhörig till en person med psykisk ohälsa kan vara förenat med omfattande svå-
righeter, men också med empati och kärlek till att vilja hjälpa och stödja sin närstående.
Kontakt och stöd från personal inom vård och omsorg och andra anhöriga med liknande
erfarenheter kan vara betydelsefullt för att hantera situationen. Trots goda intentioner i
svenska styrdokument framkommer i flera utredningar och forskning, att anhörigas behov
av kontakt och anpassat stöd från vård och omsorg inte alla gånger tillgodoses i tillräcklig
omfattning.
Syftet med föreliggande kunskapsöversikt är därför att presentera exempel på stödjande
insatser för vuxna anhöriga (18 år eller äldre), till vuxna personer (18 år eller äldre) med
psykisk ohälsa och den dokumenterade betydelse och/eller effekt som stödet kan ha för
anhöriga. Det skall tilläggas att syftet inte är att jämföra eller dra slutsatser om vilka
stödinsatser som är mest betydelsefulla eller effektiva.
Litteratursökning av svensk och internationell forskning och utvecklingsarbeten genomfördes
i olika databaser. Sökningen omfattade aspekter som: psykisk ohälsa, anhöriga,
stöd och betydelse samt effekt. Efter en första granskning av 854 studier bedömdes slutligen
54 vara relevanta för kunskapsöversiktens syfte och frågeställningar. Av dessa har 18
studier genomförts i Sverige. Studierna är genomförda med såväl kvantitativa som kvalitativa
metoder.
Vid tematisk analys av studierna framkom två huvudområden. Det ena omfattade stöd
från personal inom hälso- och sjukvård och socialtjänst. Det delades in i sex delområden;
psykopedagogiska interventioner, telefonrådgivning i grupp, webbaserat stöd, samtal och
bemötande, delaktighet i vård och omsorg, samt vård och omsorg till den närstående med
psykisk ohälsa. Det andra huvudområdet omfattade stöd från personer med egen erfarenhet
som anhörig till person med psykisk ohälsa, omfattande tre delområden; ömsesidiga
stödgrupper, individuella samtalsträffar och stöd via telefon.
Insatserna hade genomförts i grupp eller individuellt likväl som direkt eller indirekt stöd,
där indirekt stöd främst riktades till den närstående med psykisk ohälsa, vilket i sin tur
kan underlätta situationen för anhöriga. Innehållet i insatserna hade stora variationer.
Några återkommande aspekter var information, utbildning, rådgivning, problemlösning
och stresshantering, delaktighet i vård och omsorg, bemötande från personal och erfarenhetsutbyte
med andra anhöriga. Resultatet indikerar att stödinsatserna på många olika
sätt kan vara betydelsefulla för anhöriga själva, såväl fysiskt, psykiskt som socialt, men
också av betydelse för att hantera situationen och på så sätt stödja sin närstående med
psykisk ohälsa. Psykopedagogiska interventioner och ömsesidiga stödgrupper som leds av
andra anhöriga var de insatser som omfattade flest studier, såväl systematiska forsknings-
översikter som enskilda studier. Resultaten av dessa indikerade minskad belastning, ökad
kunskap om sjukdomen och behandling, samt ökad möjlighet att hantera situationen.
8
Några studier indikerade också att inställningen till den närstående med psykisk ohälsa
hade förändrats, samt att socialt stöd i grupp var betydelsefullt för att minska social isolering
och känsla av ensamhet. Utvärderingarna hade i nästan alla studier genomförts inom
ett år efter insatsen avslutats, vilket medför betydande begränsningar i vilken långtidseffekt
insatserna haft. Insatserna genomfördes av olika organisationer och personer, som
landsting, kommun, intresseorganisationer, privat och projekt under avgränsad tid. I
några studier genomfördes de i samarbete mellan flera organisationer.
Resultatet i kunskapsöversikten är inte en total kartläggning av forskning som genomförts
om stöd för anhöriga till personer med psykisk ohälsa. Det är exempel på olika former av
stöd och där det finns utvärdering som beskriver dess betydelse. Det finns säkerligen fler
studier som beskriver detta område som inte inkluderats i resultatet, både i Sverige och
internationellt. Allt som framkommer i resultatet är inte överförbart eller generaliserbart
i andra sammanhang än där det genomförts. Detta på grund av metodologiska begränsningar
i vissa studier eller att det finns geografiska, kulturella eller andra aspekter som
begränsar resultatens överförbarhet.
Utifrån resultatet av kunskapsöversikten och från anhörigas erfarenheter i andra sammanhang,
kan följande områden ses som betydelsefulla att beakta vid förändring och
utveckling av stöd till anhöriga:
➢ Information på samhällsnivå; information om var vård för personer med psykisk
ohälsa och stöd för anhöriga finns att tillgå.
➢ Strukturerade former av anhörigstöd; olika former av
psykopedagogiska insatser, ömsesidiga stödgrupper, webbaserat
stöd och individuellt samtalsstöd.
➢ Bemötande från personal inom vård och omsorg.
➢ Anhörigas delaktighet i vård och omsorg.
➢ Beaktande av sekretessen ur anhörigas och deras närståendes
perspektiv såväl som ur vård- och omsorgspersonals perspektiv.
➢ Vård och omsorg av den närstående som också beaktar anhörigas behov av trygghet.
➢ Att utveckling sker i nära samarbete mellan vård och omsorg, samt intresseorganisationer
så att allas kompetens och erfarenhet tas tillvara.
Förhoppningen är att dessa exempel på stöd som framkommit i kunskapsöversikten kan
bidra till kunskap och inspiration för utveckling och förändring av stödjande insatser för
vuxna anhöriga som har en vuxen närstående med psykisk ohälsa. Det är också betydelsefullt
att det ges förutsättningar till fortsatt dokumentation och utvärdering av insatser
som andra kan ta del av.
Anhöriga till äldre personer efter stroke
Gosman-Hedström, G.
(2010)
Anhöriga till äldre personer med psykisk ohälsa. Kunskapsöversikt 2016:1
Ericsson Iréne, Persson Marie, Hanson Elizabeth
(2016)
I denna kunskapsöversikt är vuxna anhöriga till en äldre person med psykisk ohälsa fokus. Eftersom psykisk ohälsa hos äldre skiljer sig från psykisk ohälsa hos yngre vuxna behöver situationen för dessa anhöriga beskrivas och deras specifika behov och stöd lyftas fram. Kunskapsöversikten inleds med en bakgrund till psykisk ohälsa hos äldre. Därefter följer en kort beskrivning av vård och omsorg för äldre med psykisk ohälsa, vilket är ett komplext område med många olika vårdaktörer. Slutligen presenteras forskning om anhöriga till vuxna med psykisk ohälsa och anhöriga till äldre.
Anhöriga till äldre som flyttar till särskilt boende, Anhörig 300/ 2000:3
Nyberg, A.
(2000)
Anhöriga äldre angår alla!, Kunskapsöversikt 2014:3
Jegermalm, M., Malmberg, B., & Sundström, G.
(2014)
Anhörigomsorg är del av en komplex väv med olika nivåer, individuella, familjemässiga
och övergripande samhälleliga, där åtminstone de senare har begränsade
resurser. Denna rapport presenterar och diskuterar kunskapsläget inom
svensk och internationell forskning om anhöriga till äldre. Vi sätter den svenska
anhörigomsorgen i ett större sammanhang genom resonemang om demografiska
förutsättningar, historiska tillbakablickar och internationella utblickar. Nutid
belyses med aktuella undersökningar och vi tror att framtiden kan klaras tack
vare den allt större överlappning vi redan ser mellan många olika former av
hjälp, service, omsorg och vård. Vi ställer frågan om dessa mönster kanske förbises
i de ofta dystra, rent demografisk-ekonomiska framskrivningarna.
Rapporten redovisar många svenska undersökningar av anhörigomsorg, både
i befolkningen i stort och bland äldre. Det förefaller klart att det skett en faktisk
ökning av anhörigomsorgens omfattning från 1990-talet och början av 2000-
talet, något som flera studier visar. Resultat från en europeisk undersökning med
gemensamma frågor och svarsalternativ tyder på att anhörigomsorg är vanligare
i Nordeuropa än i Sydeuropa vilket nog strider mot gängse föreställningar.
Kanske är det i Norden vanligare att vara hjälpgivare men inte med lika omfattande
engagemang eller lika länge och man bor sällan tillsammans. Då fördelas
nog omsorgen på fler händer. I Sverige angav mindre än 1 procent att de gav
omsorg på heltid, i Spanien 5 procent. Sammantaget har, i Sverige liksom i
övriga Europa, mer än 4 av 10 i befolkningen en aktuell eller tidigare personlig
erfarenhet av att ge omsorg, och på befolkningsnivå är anhörigomsorgen klart
större än den offentliga. De flesta svenska studier visar att det är ungefär lika
vanligt bland kvinnor och män att vara givare av anhörigomsorg. Kvinnor ger
dock oftare personlig omvårdnad och de ger fler timmar omsorg än männen.
De flesta omsorgsgivare ger ganska få hjälptimmar, men timinsatserna ökar
med stigande ålder och är högst bland de äldsta. I genomsnitt ger omkring 30
procent av omsorgsgivarna daglig hjälp, men den andelen stiger till nästan 40
procent för anhörigvårdare i 65–80 årsåldern och till 80 procent för dem som är
ännu äldre. Äldre utgör således 30 procent av alla som ger omsorg, oftast till
andra äldre, men utför ungefär 4 av 10 omsorgstimmar. Äldre personer är inte
bara mottagare av omsorg utan minst lika ofta också givare.
De flesta givare av anhörigomsorg ger "lättare" former av insatser (skjutsning,
passning, tillsyn etc.), insatser som många gånger säkerligen är viktiga och kan
vara avgörande för mottagaren. Det är viktigt att se det stora spektret av anhörigomsorg
och att det också finns grupper av anhöriga (ofta äldre personer) som
gör omfattande insatser som kan påverka såväl egen hälsa som arbetsliv. Vid
små hjälpbehov – fallet för de flesta – får man lite hjälp främst av anhöriga, vid
större behov mer hjälp och då av både anhöriga och av kommunen. Delat ansvar
7
är vanligt och även vad omsorgsgivare och mottagare önskar. Få önskar bära
ansvaret ensamma och få önskar att ansvaret helt ligger på det offentliga.
Historiskt utgör barn och andra anhöriga en viss trygghet på ålderdomen,
något som inte tillhör det förflutna, utan snarare kommer att få större betydelse
framöver. Anledningen är demografisk: allt fler har nära anhöriga i form av en
egen familj. Familjens relativa betydelse har ökat, inte minskat som man ibland
föreställer sig. Detta accentueras av att den offentliga omsorgen visserligen är väl
utbyggd i Sverige, men tycks ha nått gränsen för vad den kan uträtta, praktiskt
och finansiellt. Anhörigomsorgen har även socialpolitiska aspekter. Den som är
eller varit anhörigvårdare vill helst inte själv vara mottagare av omfattande anhörigvård,
utan hellre få huvuddelen av omsorgen från det offentliga. Man kan
nog förutse ännu strängare ransonering av offentliga tjänster i framtiden, där
anhöriga och marknadsbaserade tjänster är alternativen, möjligen tillsammans
med växande insatser från ideella organisationer.
Anhörigas behov av stöd när de vårdar en äldre närstående i hemmet : En systematisk litteraturstudie (Vård i livets slutskede ; 2001:7).
Stoltz, P., Nilsson, R., & Willman, A.
(2001)
Anhörigas betalda och obetalda äldreomsorgsinsatser
Szebehely, M.
(2005)
Anhörigas delaktighet i psykiatrin – resultat från EUNOMIA-projektet
Wadefjord, Anna, Gustavsson, Marita, Stenmarck, Mats & Kjellin, Lars
(2009)
Tidigare forskning har visat att psykiska sjukdomar har stor inverkan inte bara på de personer som drabbas utan även på deras anhöriga, och att många anhöriga inte upplever sig vara tillräckligt delaktiga i den psykiatriska vården. Få skillnader i dessa avseenden har funnits mellan anhöriga till frivilligt vårdade och anhöriga till tvångsvårdade patienter. Denna rapport redovisar några resultat från en anhörigstudie som genomförts under perioden augusti 2004 till februari 2006 i Örebro län som en del i en större EU-finansierad europeisk studie av psykiatrisk tvångsvård, det så kallade EUNOMIA-projektet.
Syftet med Örebro-delen av EUNOMIA-projektets anhörigstudie var att undersöka hur anhöriga till frivilligt vårdade och tvångsvårdade patienter uppfattar orsak till intagning, förekomst av tvång vid intagning, bemötande av och hjälp till patienten under vården, bemö-tande av anhöriga, anhörigas delaktighet i vården samt patientens prognos.
Fyrtiofyra anhöriga till personer som intagits i psykiatrisk slutenvård i Örebro län, och som inkluderats i EUNOMIA-projektets patientstudie, tillfrågades om deltagande. Av dessa tackade 36 personer (82 %) ja till deltagande i studien, varav 25 kvinnor och 11 män. De som intervjuades var mammor, pappor, vuxna barn, syskon, make, maka eller partner, andra släktingar och närstående av annat slag. Tjugotvå av de intervjuade var närstående till frivilligt vårdade och 14 anhöriga till tvångsvårdade patienter.
Anhörigintervjun genomfördes inom fyra veckor från det att patienten skrevs in på psykiatrisk vårdavdelning. Frågorna handlade om den anhöriges relation till patienten, uppfattning om patientens möjlighet att återfå sin psykiska hälsa, bedömning av graden av tvång vid intagning, uppfattning om varför patienten blev intagen, vårdtillfredsställelse, samt om bemötande och delaktighet i och dialog med den psykiatriska vården.
Den enligt de anhöriga vanligast förekommande orsaken till att patienten blev intagen var att det förelåg allvarlig fara för eller hot mot patientens hälsa samt att patienten var oförmögen att ta hand om sig själv. Bedömningarna av vilken grad av tvång patienterna upplevde vid intagningen visade på samstämmighet mellan patienter och anhöriga. Däremot var det en större andel bland de svarande närstående än bland patienterna som ansåg att patientens behandlare eller kontaktperson förstod patienten och var engagerad i patientens behandling och vård, att patienten blev respekterad och väl behandlad på avdelningen, samt att behandlingen och vården varit till hjälp för patienten. Många anhöriga kunde tänka sig ett tvångsomhändertagande i det fall patienten skulle få samma problem igen och inte skulle vilja läggas in frivilligt.
Över 80 procent av de närstående kände sig "som vanligt", likvärdiga eller respekterade i sina kontakter med psykiatrin. Nästan 40 procent uppgav att de inte kände sig tillräckligt delaktiga i patientens vård och behandling. De som hade haft kontakt med psykiatrin under det senaste året kände sig bättre bemötta och mer delaktiga i patientens inläggning, vård och behandling än de som inte hade haft någon kontakt. Över hälften upplevde inte att de haft någon dialog med personal från psykiatrin. Svaren uttrycker stor variation med både stark kritik mot och stor tillfredsställelse med kontakterna med psykiatrin, liksom att inte alla an-höriga vill ha någon omfattande sådan kontakt.
En stor del av de närstående uttryckte optimism beträffande patientens prognos. Många trodde att deras sjuke son, dotter, förälder, make, maka, sambo, partner, släkting eller vän helt eller delvis skulle återfå sin psykiska hälsa, framför allt bland anhöriga till patienter som inte varit sjuka sedan så lång tid tillbaka.
Anhörigas delaktighet och behov
Hanson Elizabeth, Sennemark Eva, Magnusson Lennart
(2019)
Anhörigas erfarenheter av information och stöd i samband med palliativ cancervård. C-uppsats
Bygeus, R & Persson, A.
(2008)
Anhörigas hälsa: När mår man bra som anhörig? Inspirationsmaterial till kunskapsöversikt 2012:1
Svensson, Jan-Olof
(2012)
Skrift med syfte att inspirera till samtal om anhörigas hälsa. I samtal kan erfarenheter ventileras och tillsammans med innehållet i kunskapsöversikten öka förståelsen för anhöirgas situation. Syftet är att skapa nyfikenhet, vilket kan leda till utveckling av innehållet i stödet till anhöirga.
Anhörigas insatser efter stroke är omfattande och ofta livslånga. Följderna för anhöriga behöver uppmärksammas mer, visar enkätstudie
Hulter Åsberg, K., Söderholm, A., Bjarne, D., & Johansson, L.
(2014)
Studiens syfte var att beskriva konsekvenserna för anhöriga när en närstående insjuknat i stroke. Drygt 11 000 anhöriga svarade på Riks-Strokes enkäter 2010–2012.
Drygt hälften var vårdgivande anhöriga vars liv förändrats genom bundenhet till hemmet och omfattande hjälpinsatser.
Många under 65 år hade gått ner i arbetstid eller lämnat arbetslivet på grund av vårduppgiften. Denna grupp hade minst kunskap om vart de kunde vända sig för att få råd och stöd.
Anhörigas roll har blivit allt viktigare när personer med funktionsnedsättning förväntas bo kvar hemma.
Vårdgivande anhöriga behöver återkommande stöd för sin ofta livslånga vårdinsats och bör uppmärksammas också i andra kvalitetsregister.
Anhörigas situation i ett femårsperspektiv
Axelsson-Östman, Margareta & Johansson, Kristina
(1994)
Anhörigas situation. En rapport från Riks-Stroke
Riks-Stroke
(2013)
Anhörigas uppfattningar om bostad med särskild service enligt LSS. Boendeprojektet, delrapport 17.
Carlbom, A., & Östman, M.
(2007)
Sammanfattningsvis kan man säga att LSS-boende, som uttrycks av
informanterna i den här studien, har varit positivt för den boende själv och alla
som kommit i kontakt med honom eller henne. Det är tydligt i informanternas
berättelser att de och deras anhöriga, i samband med att LSS-boendet blivit
verklighet, har fått till en förändring av hela den sociala kontext de levde och
lever i. Man kan sammanfatta LSS-boendets sociala och psykologiska effekter i
några konkreta punkter för de anhöriga respektive de boende:
15
De anhöriga
De anhöriga befrias från den oro för den boendes välmående och praktiska
omständigheter som präglade vardagslivet före LSS-boendet. Detta boende
medför alltså en högre grad av vardaglig trygghet. De anhöriga får också en
avlastning av den emotionella anspänning det innebär att ha en familjemedlem
som lider av psykisk ohälsa. Dessutom erhåller de ett delat ansvar för den
familjebörda det innebär att ha en familjemedlem som lider av psykisk ohälsa. De
blir också avlastade det sociala stigma det kan innebära att ha en familjemedlem
som har ett psykiskt funktionshinder.
De boende
Den boende erhåller en struktur i vardagslivet på LSS-boendet som saknades vid
det tidigare boendet. Här finns också möjlighet att få hjälp med den personliga
omvårdnaden och att upprätta relationer specialister av olika slag, bland annat
läkare som kan övervaka eventuell medicinering. Den boende blir också avlastad
det sociala stigma som tidigare präglade relationen till framförallt grannar och
fastighetsägare.
Den generella slutsats som kan dras i den här studien är att denna form av boende
erbjuder en förhöjd livskvalité för samtliga parter. Sammantaget verkar alltså
denna boendeform gynna den psykiska hälsan för alla och kan därmed sägas bidra
till att hela samhället på ett eller annat sätt gynnas.
Anhörigas upplevelser av att vårda sina närstående i livets slut i hemmet. (C-uppsats)
Karlsson, J., & Lindbäck, K.
(2007)
Anhörigas upplevelser av personalens stöd i hemtjänst och på särskilt boende
Ljungbeck, B.
(2012)
Bakgrund: Mer och mer forskning har tillägnats anhörigstöd och kunskap om vilket stöd anhöriga behöver har växt fram. Studier visar att det uppstår onödiga konflikter mellan personal och anhöriga inom äldreomsorgen på grund av bristande kommunikation och förståelse för varandra. Sedan 2009 är personal skyldiga att erbjuda anhöriga stöd vilket har lett till behov av att utveckla modeller för hur personal och anhöriga kan mötas. Anhörigstöd i Partnerskap är en sådan modell. Syfte: Syftet med studien var att beskriva vilka sorters stöd som anhöriga i hemtjänst och på särskilt boende uttrycker att de behöver av personalen. Ett ytterligare syfte var att belysa om de anhöriga upplevde några förändringar i stödet efter att personalen genomgått en utbildning, "Anhörigstöd i Partnerskap". Metod: Nio semistrukturerade intervjuer har genomförts med anhöriga till äldre på särskilt boende och i hemtjänst. Intervjuerna har analyserats med en latent innehållsanalys. Resultat: I ett gott anhörigstöd ingick att veta att den äldre hade det bra, att anhöriga blev sedda av personalen, att anhöriga fick stöd av personalen i beslutsfattande och att anhöriga fick stöd av personalen i att våga släppa taget och kunna slappna av. Endast smärre förändringar efter utbildningen noterades. Slutsats: Flera viktiga aspekter av ett gott anhörigstöd har framkommit, vissa av dessa aspekter var tillgodosedda medan andra inte var det. Personalen har genom utbildningen fått verktyg för att ytterligare utveckla anhörigstödet. Möjligheten att lyckas bedöms som stor då intresset och engagemanget för att utveckla stödet till anhöriga finns bland både personal och chefer.
Anhörigcentrum i Karlstad - en mötesplats med omtanke : anhörigstöd
Rågvik, H.
(2009)
Anhörigengagemang : Två studier på Gotland
Orsholm, I.
(2002)
Anhöriggruppen ger avlastning (på äldre dar).
Råssjö, G.
(2006)
Anhörigkonsulenten har en nyckelroll.
Mellfors, B.
(2009)
Anhörigkonsulentens arbete och yrkesroll
Winqvist, M.
(2014)
Anhörigkonsulenter och motsvarande yrkesgrupper har en central betydelse för innehållet i och utvecklingen av anhörigstödet i landets kommuner. Nka har därför genomfört en enkätstudie med syftet att få en nationell överblick över hur denna relativt sett nya yrkesgrupp utformar och ser på sitt arbete. Denna rapport innehåller en sammanställning av svaren på denna enkät som riktade sig till landets samtliga anhörigkonsulenter.
Anhörigomsorg : Av kärlek eller tvång?
Szebehely, M.
(2004)
Anhörigomsorg : Av kärlek eller tvång?
Szebehely, M.
(2004)
Anhörigomsorg : Omsorg om anhöriga
Johansson, L., & Nyberg, G.
(2004)
Anhörigomsorg i stad och land
Ulmanen, Petra
(2018)
Anhörig-omsorg och stöd
Johansson L.
(2007)
Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.
Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.
Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre.
Anhörigperspektiv - en möjlighet till utveckling? Nationell kartläggning av kommunernas stöd till anhöriga 2019
Takter Martina
(2020)
Syftet med denna studie är att skapa en översikt
och en systematisk redovisning. Förhoppningen
är också att projektet utvecklas till att bli en
återkommande studie med jämnt intervall för
att på sikt bidra till större jämlikhet mellan
kommunerna och få en mer systematisk översikt.
Projektet syftar också till att inspirera kommuner
samt lyfta några exempel från kommunerna av
det som görs runt om i landet.
En sammanfattning av resultatet kommer att
finnas tillgängligt i en Excel-fil på Anhörigas
Riksförbunds hemsida, anhorigasriksforbund.se.
Excelfilen kan användas för att skaffa sig en
överblick av stöd till anhöriga och fördjupa sig
ytterligare i resultaten. Den kan också användas
i arbetet med att ta fram idéer om hur man
bygger upp och vidareutvecklar ett stöd till
anhöriga, som är tillgängligt för alla anhöriga
oavsett ålder och diagnos hos den närstående.
Anhörigperspektiv i äldreomsorg - ett utvecklingsprojekt
Winqvist, M., & Lerman, B.
(2010)
Under 2008 – 2009 genomförde Enheten för FoU-stöd, Regionförbundet Uppsala län ett utvecklingsprojekt tillsammans med en personalgrupp vid ett särskilt boende i Enköpings kommun samt en personalgrupp vid ett hemtjänstdistrikt i Tierps kommun.
Syftet med projektet var att införa och stärka ett anhörigperspektiv i den ordinarie äldreomsorgen. Vid uppföljning hösten 2009 framkom att flera förbättringar har genomförts i verksamheterna som en följd av projektet. Projektet presenteras i den här rapporten.
Anhörigperspektiv i äldreomsorg – ett utvecklingsprojekt, FoU-rapport 2010/3.
Winqvist, M.
(2010)
Den offentliga äldreomsorgen har sedan 1990-talet allt mer koncentrerats till personer med
omfattande hjälp-/stödbehov. Tröskeln till hemtjänst har höjts. Kunskaperna har samtidigt
ökat om omfattningen av den hjälp som anhöriga faktiskt ger och att denna hjälp även kan
innebära stora påfrestningar för de anhöriga. Detta har lett till att staten under senare år har
gjort stora satsningar för att stimulera utvecklingen av kommunernas stöd till anhöriga. Detta
stöd kan vara direkt eller indirekt. Det kan också beskrivas som synligt respektive osynligt.
Det personalen gör för den person som är sjuk eller funktionshindrad innebär, om det utförs
väl, ett indirekt stöd för den anhöriga. Det osynliga stödet handlar mycket om att ha god
kunskap om anhörigas villkor, förståelse av den anhörigas roll i omsorgsarbetet och för den
anhörigas personliga situation samt hur anhöriga betraktas och bemöts. I detta perspektiv är
stöd till anhöriga en angelägenhet inte bara för dem som arbetar med direkt anhörigstöd utan
för hela organisationen
Ett övergripande syfte med detta projekt har varit att utveckla och pröva metoder för att införa
och stärka ett anhörigperspektiv i vård och omsorgsverksamhet för äldre. Projektet har
genomförts tillsammans med personal i Örbyhus hemtjänstdistrikt i Tierps kommun och
personal på Tallgårdens särskilda boende för äldre i Enköpings kommun.
Projektet har genomförts i tre faser.
1. Analys. Syftet var här att få information om hur de berörda verksamheterna fungerar ur ett
anhörigperspektiv, detta som ett underlag för utvecklingsarbetet. Fokusgruppsintervjuer
genomfördes dels vid hemtjänsten och dels vid det särskilda boendet med såväl anhöriga som
personal samt vid ett senare tillfälle en fördjupad gruppintervju med anhöriga.
2. Intervention. En FoU-cirkel genomfördes, sex träffar à tre timmar, med personalgrupperna
vid hemtjänsten respektive det särskilda boendet. I cirkeln deltog även enhetscheferna och
anhörigkonsulent/anhörigrådgivare. Arbetet var processinriktat och gick ut på att utveckla ett
anhörigperspektiv (förståelse och medvetenhet) samt formulera en handlingsplan för ett
förhållningssätt till och samarbete med anhöriga. Ett genomgående inslag i FoU-cirkeln var
gruppdiskussioner och reflektion. Tanken var att deltagarna själva skulle skapa sin
verksamhets anhörigperspektiv och inte serveras någon färdig lösning. Resultaten från
analysfasen var, tillsammans med deltagarnas egna erfarenheter, ett viktigt grundmaterial för
diskussionerna i FoU-cirkeln. Andra inslag var föredrag om olika teman, informationsgranskning,
film, egna intervjuer med någon anhörig samt arbete med att formulera en
handlingsplan. Varje möte dokumenterades.
3 Uppföljning. Uppföljning av projektet gjordes på flera sätt. Cirka tre månader efter
projektets slut genomförde anhörigkonsulenten/-rådgivaren en gruppintervju med sina
respektive personalgrupper. Vid samma besök fick deltagarna också individuellt fylla i en
utvärderingsblankett. Ytterligare ca tre månader senare genomförde projektledningen återigen
en fokusgruppsintervju med samma frågeställning som i analysfasen samt en gruppintervju
kring frågan om hur anhörigperspektivet kan hållas levande och fortsätta att utvecklas.
Efter projektet kan konstateras att arbetsformen fungerat väl och varit uppskattad. Det kanske
mest betydelsefulla inslaget har varit möjligheten för personalen att i gruppdiskussioner
reflektera kring vad de hört i föredrag, sett i film, läst i artiklar och upplevt i egna intervjuer
7
med anhöriga. Flera exempel gavs på förändringar som genomfördes redan medan projektet
pågick. Exempel på det är införande av telefontid för ökad tillgänglighet, förbättrad
information genom pärmsystem, nya rutiner för kontaktmannaskapet samt en utvecklad
relation mellan kontaktmannen och biståndshandläggaren.
Anhörigskap och anhörigstöd i särskilt boende
Whitaker, A.
(2008)
Anhörigskapets uttrycksformer
Jeppsson-Grassman, E.
(2003)
Sedan början av 1900-talet har samhällets intresse ökat för den informella, oavlönade hjälp som många människor regelbundet ger till sina närstående. "Anhöriga" har kommit i blickfånget, framför allt anhöriga till äldre. Bakgrunden är bl.a. tilltagande vård- och omsorgsbehov men också en nyvaknad insikt om det informella hjälparbetets betydelse. Men hur ska man egentligen förstå anhörigbegreppet? Vad är det för slags hjälpinsatser som anhöriga utför? Hur vanliga är de och vad består de av?
Anhörigskapets variationer : Åtta berättelser från hjälpgivare i olika miljöer
Orsholm, I.
(2001)
Anhörigstöd - ett helt annat sätt att tänka. Fokus-Rapport 2011:1
Gough, R., Renblad, K., Söderberg, E., & Wikström, E.
(2011)
Författarna har tillsammans 100 års erfarenhet av verksamhet inom området äldre och funktionshindrade och deras familjer.
Rapporten belyser på ett insiktsfullt sätt den komplexitet i anhörigomsorg som ligger i sakens natur och diskuterar dess subtila nyanser.
Denna text är en oväderlig resurs för studenter inom vårdvetenskap, socialt arbete och rehabilitering, för personal som arbetar direkt med anhöriga i sitt dagliga arbete, för beslutsfattare med ansvar för anhörigstöd i kommunerna och för alla andra med intresse för ämnet.
Anhörigstöd - information via internet? [Kandidatuppsats]
Nord Berge, M.
(2008)
Anhörigstöd - information via internet? [Kandidatuppsats]
Nord Berge, M.
(2008)
Anhörigstöd : En uppföljningsstudie av kommuners och frivilliga organisationers stöd till äldres anhöriga
Jegermalm, M.
(2002)
Anhörigstöd : En uppföljningsstudie av kommuners och frivilliga organisationers stöd till äldres anhöriga
Jegermalm, M.
(2002)
Anhörigstöd 2010. Dokumentation
Livgård Andersson, Birgitta, Flynner, Marianne & Lagernäs, Eva
(2010)
Anhörigstöd en viktig insats
Länsstyrelsen Östergötland
(2009)
Anhörigstöd i Bodens kommun
Bodens kommun
(2010)
Anhörigstöd i Dalarna. Politisk förankring och samverkan
Wolff, Sara
(2010)
Anhörigstöd i förändring - en studie om anhörigstöd i äldreomsorgen [C-uppsats].
Janz, M.
(2008)
Anhörigstöd i Orsa kommun
Hassis, L.
(2009)
Våren 2008 publicerade Dalarnas forskningsråd en kartläggning över anhörigstödet i
Dalarna. Kartläggningen visade att arbetet med anhörigfrågor ser olika ut i Dalarnas
kommuner. Föreliggande rapport syftar till att kartlägga hur samarbetet i
anhörigfrågor ser ut i Orsa kommun. Studien bygger på i första hand personliga
intervjuer med anhörigvårdare och representanter från styrgruppen.
I Orsa finns ett anhörigcenter centralt beläget i anslutning till vårdcentral,
dagverksamhet och särskilt boende. En anhörigsamordnare är anställd på halvtid för
att samordna verksamheten och fungera som kontaktperson. Till sin hjälp har
anhörigsamordnaren en styrgrupp bestående av representanter från
frivilligorganisationer, kyrka och vårdcentral. Flera av styrgruppens representanter,
samt personal från dagverksamhet, fungerar även som sk. anhörigombud i
kommunen.
I programmet för 2009 erbjuds allt från sopplunch och syjunta/stickjunta till
närståendeträffar och föreläsningar/studiecirklar om stroke och demens. Våren
2009 hade anhörigcentret kontakt med strax över hundratalet anhörigvårdare, en
viss ökning från tiden för ovan nämnda kartläggning. En stor del av kontakterna
sker per telefon och med många av anhörigvårdarna är kontakten bara sporadisk.
Utöver anhörigcentrets verksamhet erbjuds stöd till anhörigvårdare främst genom
avlösning. Avlösningen ges genom dagverksamhet, korttidsboende och hemtjänst.
De intervjuade är alla nöjda med den verksamhet som bedrivs vid anhörigcentret.
Personalen vid anhörigcentret och dagverksamheten Ljusglimten framstår som viktiga
kuggar i arbetet med anhörigstöd i kommunen. Visst missnöje finns däremot med
hemtjänsten som enligt några av de intervjuade behöver bli mer flexibel och med
korttidsboendet som idag tycks inrymma personer med alltför skiftande
sjukdomsbild. Flera av de intervjuade påtalar en hos personalen (hemtjänst och
korttidsboende/särskilt boende) bristande förståelse för de problem såväl vårdtagare
som anhörigvårdare ställs inför. För att öka denna förståelse behövs utbildning och
information.
Anhörigstöd i Skaraborg – kartläggning 2010. Kommuner, Hälso- och sjukvård
Skaraborgs Kommunalförbund
(2010)
Anhörigstöd i Skaraborg. Utvärdering av ett samverkansprojekt mellan 15 kommner. Primärvård och sjukhus 2006-2009
Skaraborgs Kommunalförbund
(2009)
Anhörigstöd i teori och praktik
Johansson, L.
(2001)
Anhörigstöd i Vansbro kommun. Anhöriga berättar.
Edkvist, I.
(2002)
Anhörigvårdares vardag. En kunskapsöversikt och två studier kring äldres anhöriga. Arbetsrapport.
Anhörigstöd i Värmland : Lägesrapport 2
Danielsson Gustafsson, E.
(2007)
Anhörigstöd i Värmland Lägesrapport 2006
Länsstyrelsen i Värmlands län
(2007)
Anhörigstöd. C-uppsats
Westberg, L., & Persson, M.
(2005)
Anhörigstöd. Information till anhörig-, brukar- och patientorganisationer
Socialstyrelsen
(2015)
Skriften vänder sig till ideella organisationer för anhöriga, brukare och patienter. Den kan ge stöd i att formulera och utveckla organisationens syn på anhörigstöd enligt 5 kap. 10 § socialtjänstlagen, vad bestämmelsen betyder för enskilda och hur man kan arbeta vidare för de anhörigas bästa.
Anhörigstöd: en uppföljningsstudie av kommuners och frivilliga organisationers stöd till äldres anhöriga
Jegermalm, M.
(2002)
Anhörigstödet i Dalarna. Politisk förankring och samverkan
Wolff, S.
(2010)
Anhörigstödets grundpelare
Johansson, L.
(2008)
Anhörigstödets grundpelare
Johansson, L.
(2008)
Ett framgångsrikt anhörigstöd står på några viktiga grundpelare. En av dessa är att stödet tillför något positivt till både den anhörige och den demenssjuke. Det menar docent Lennarth Johansson.
Anhörigvård
Bergh, A.
(1997)
Boken handlar om vad som händer när de anhöriga, aktiva som passiva, och sjukhemmets eller hemtjänstens personal på olika sätt konfronteras med varandra.
Anhörigvård – arbete, ansvar, kärlek, försörjning
Sand A-B.
(2002)
Hur påverkas livet om barnet föds med utvecklingsstörning, om tonåringen får livslångt hjälpbehov efter en trafikolycka, om den medelålders maken får stroke eller om en gammal förälder drabbas av demenssjukdom? Det var några av frågorna bakom ett omfattande forskningsprojekt om anhörigvård. I Sverige har samhället ansvaret för att äldre, sjuka och funktionshindrade ska få den hjälp de behöver. Ändå utförs merparten av all vård och omsorg av närstående, ibland under mycket svåra förhållanden. Resultaten som denna bok bygger på belyser anhörigvårdarnas situation ur ett socialt, ekonomiskt och arbetsmässigt perspektiv.
I dagens Sverige pågår en mycket tydlig förskjutning av arbete och ansvar från det offentliga till familjen. Med utgångspunkt i lagstiftningen diskuteras därför samhällets respektive individens ansvar för hjälpbehövande människor. En sådan diskussion är viktig eftersom konsekvenserna av ett minskande samhällsengagemang är outforskade när det gäller familjens och de anhörigas situation.
Boken vänder sig till de som på något sätt kommer i kontakt med frågor om anhörigvård. Den kan läsas av omsorgs- och sjukvårdspersonal, studerande vid utbildningar inom välfärdstjänstområdet, politiker samt övriga som är intresserade av frågor kring samhällsförändringar, välfärdsstat, jämställdhetsfrågor och framtida omsorgsproblematik. Även omsorgsbehövande och anhöriga kan ha glädje av boken.
Anhörigvård [elektronisk resurs] : Arbete, ansvar, kärlek, försörjning
Sand, A.-B. M.
(2006)
Hur påverkas livet om barnet föds med utvecklingsstörning, om tonåringen får livslångt hjälpbehov efter en trafikolycka, om den medelålders maken får stroke eller om en gammal förälder drabbas av demenssjukdom? Det var några av frågorna bakom ett omfattande forskningsprojekt om anhörigvård. I Sverige har samhället ansvaret för att äldre, sjuka och funktionshindrade ska få den hjälp de behöver. Ändå utförs merparten av all vård och omsorg av närstående, ibland under mycket svåra förhållanden. Resultaten som denna bok bygger på belyser anhörigvårdarnas situation ur ett socialt, ekonomiskt och arbetsmässigt perspektiv.
I dagens Sverige pågår en mycket tydlig förskjutning av arbete och ansvar från det offentliga till familjen. Med utgångspunkt i lagstiftningen diskuteras därför samhällets respektive individens ansvar för hjälpbehövande människor. En sådan diskussion är viktig eftersom konsekvenserna av ett minskande samhällsengagemang är outforskade när det gäller familjens och de anhörigas situation.
Boken vänder sig till de som på något sätt kommer i kontakt med frågor om anhörigvård. Den kan läsas av omsorgs- och sjukvårdspersonal, studerande vid utbildningar inom välfärdstjänstområdet, politiker samt övriga som är intresserade av frågor kring samhällsförändringar, välfärdsstat, jämställdhetsfrågor och framtida omsorgsproblematik. Även omsorgsbehövande och anhöriga kan ha glädje av boken.
Anhörigvård [elektronisk resurs].
Bergh, A.
(2005)
Boken handlar om vad som händer när de anhöriga, aktiva som passiva, och sjukhemmets eller hemtjänstens personal på olika sätt konfronteras med varandra.
Anhörigvård med trygghet för alla
Singh Y.
(2008)
Anhörigvård och anhörigstöd i Uppsala : Rapport från en forskningscirkel inom Uppsala Pensionärsuniversitet
Aldskogius, M., Bergling, R., & Hellzén, N.
(2001)
Anhöriga som kombinerar förvärvsarbete och anhörigomsorg
Sand, Ann-Britt
(2010)
Internationella forskningsresultat visar att ett omfattande omsorgsansvar har en negativ påverkan på arbetslivet. I denna kunskapsöversikt ges förslag på stöd och hjälp som efterfrågas av anhöriga som kombinerar anhörigomsorg och förvärvsarbete.
Anhörigvårdare - kommunens stöd till anhörigvårdare och deras behov av stöd och hjälp [Kandidatuppsats]
Hallén, S. Henning, A. & Salmi, C.
(2007)
Anhörigvårdare – oorganiserad, oerkänd och oavlönad omsorgsresurs. Enkätstudie av närstående vårdgivare till parkinsonpatienter
Lökk, J.
(2009)
Informella vårdgivare till kroniskt
sjuka personer utgörs i
stor utsträckning av oavlönade
närstående.
Dessa närstående upplever
en belastning och begränsning
i sin livssituation och
dåligt erkännande från omgivningen:
ju längre omsorgstid,
desto hög re belastning
inom vissa domäner.
Behovet av hemtjänst överstiger
den faktiskt erhållna
hjälpen.
Närstående är mer informerade
om sjukdomen vid längre
omsorgstid.
Samhället borde även beakta
närståendes roll vid planering
av vård och behandling
av kroniskt sjuka personer.
Anhörigvårdarens situation. (C-uppsats)
Svensson, M. N. R.
(2005)
Anticipated support from neighbors and physical functioning during later life
Shaw, B. A.
(2005)
This study has two main objectives: (1) to assess age variations in perceived support from neighbors among a nationally representative sample of adults aged 25 to 74 and (2) to examine the association between anticipated support from neighbors and physical functioning within a subsample of older adults. The findings suggest that anticipated support from neighbors is stronger among older adults, primarily because of more frequent contact with neighbors and residential stability. Within the older subsample, an inverse association between perceived support from neighbors and functional limitations is evident. Further analyses show that this association is strongest among those with infrequent contact with family members. No differences in this association were found with respect to marital status. Taken together, it appears that anticipated support from neighbors facilitates the maintenance of functional ability among some older adults. Interventions aiming to promote successful aging by enhancing this source of support should be developed and evaluated.
Anticipatory Grief Among Close Relatives of Patients in Hospice and Palliative Wards
Johansson, Å. K. and A. Grimby
(2012)
A Swedish widowhood study revealed that four out of ten widows regarded the pre-loss period more stressful than the post-loss. The present investigation of close relatives to patients dying from cancer (using interviews and the Anticipatory Grief Scale) found that preparatory grief involves much emotional stress, as intense preoccupation with the dying, longing for his/her former personality, loneliness, tearfulness, cognitive dysfunction, irritability, anger and social withdrawal, and a need to talk. Psychological status was bad one by every fifth. However, the relatives mostly stated adjustment and ability to mobilize strength to cope with the situation. The results suggest development of support and guiding programs also for the anticipatory period.
Anticipatory Grief Among Close Relatives of Persons With Dementia in Comparison With Close Relatives of Patients With Cancer
Johansson, Å. K., Sundh, V., Wijk, H., & Grimby, A.
(2012)
Close relatives of persons with dementia self-reported reactions on the Anticipatory Grief Scale (AGS), were observed by nurses (Study I), and compared with relatives of cancer patients in a study using the same methodology (Study II). Study I showed an overall stressful situation including feelings of missing and longing, inability to accept the terminal fact, preoccupation with the ill, tearfulness, sleeping problems, anger, loneliness, and a need to talk. The ability to cope was, however, reported high. Self-assessments and nurses' observations did not always converge, e.g. for the acceptance of the illness. The reactions of the relatives in the dementia and the cancer groups showed more similarities than dissimilarities. However, the higher number of responding spouses in the cancer group may have influenced the outcome.
Antologin: Att se barn som anhöriga - om relationer, interventioner och omsorgsansvar
Järkestig Berggren Ulrika, Magnusson Lennart, Hanson Elizabeth redaktörer
(2015)
Barn föds anhöriga och växer upp som anhöriga till föräldrar och syskon och andra viktiga personer i familjen. I dessa relationer har minderråriga barn sin trygghet och tillitsbas att bygga sitt liv på. Omvänt får de svårigheter som drabbat föräldrar eller syskon konsekvenser också för barn. Vilka är dessa konsekvenser och hur kan vi förstå barns anhörigskap? Vilka roller kan barnet ha i sin familj? När behöver barn och föräldrar stöd och hur?
I denna antologi försöker forskare som deltar i eller är inbjudna till det svenska forskarnätverket "Barn som anhöriga" att utifrån aktuell forskning undersöka, beskriva och förklara innebörden i att barn är anhöriga. Olika teman lygfs såsom barns positoioner i familjen där utsatthet och beroende i relation till föräldrar beskrivs men också barns aktiva agerande i relation till föräldrar och syskon belyses.
Ett sådant exempel är när barn blir omsorgsgivare till syskon eller föräldrar, vilket också beskrivs i en internationell utblick. Vidare beskrivs hur många barn som är anhöriga i de sammanhang som hälso- och sjukvårdslagen omfattar och hur det går för dem i skolan. Ett avsnitt tar upp aktuell kunskap om befintliga interventioner för stöd till barn och föräldrar. Även stöd till anhöriga syskon och forskning om om våld i familjen belyses.
Boken vänder sig till studerande på sjuksköterske-, läkar-, socionom- och lärarprogrammet samt övriga proffessionsutbildningar som i sin yrkesverksamhet möter anhöriga barn och deras föräldrar i behov av stöd. Den ä räven avsedd för beslutsfattare, verksamhetsutvecklare, enskilda personer och idéburna organisationer som söker kunskap om barns livsvillkor som anhöriga.
Apelsinträdgården
Roca Ahlgren, Malin
(2018)
Alla människor har ett eget apelsinträd. På vissa växer det många apelsiner och på andra bara några stycken. Men varje dag växer det nya. Varje apelsin ger ork att kunna göra olika saker. Som att klä på sig, äta, prata, duscha eller handla. Elinas mamma har inte så många apelsiner på sitt träd. Dom försvann en dag, för att hon orkat för mycket under en lång tid. En bok om utmattningssyndrom. Boken är tänkt som stöd för drabbade barnfamiljer.
Applying the Theory of Motivated Information Management to adult children's discussions of caregiving with aging parents
Fowler, C. and W. A. Afifi
(2011)
Adult children are perhaps the most important source of eldercare for aging parents. Unfortunately, they rarely discuss potential eldercare arrangements with their parents prior to adopting a caregiving role, which may make adapting to the parent's transition to dependency all the more challenging. The Theory of Motivated Information Management (TMIM) is a social-psychological framework that has had success predicting information-seeking decisions about health issues. As such, it served as the theoretical basis for examining adult children's pursuit of information from their elderly parents about caregiving preferences. In addition, this study serves as the first empirical test of a revised version of the TMIM, with an expanded treatment of the role played by emotion. The results of an over-time study attest to the utility of the revised TMIM predictions in this context, and offer insight into the factors that predict adult children's decision to discuss caregiving with their parents.
Approaching the prevalence of the full spectrum of fetal alcohol spectrum disorders in a South African population-based study
May PA, Blankenship J, Marais AS, Gossage JP, Kalberg WO, Barnard R, De Vries M, Robinson LK, Adnams CM, Buckley D, Manning M, Jones KL, Parry C, Hoyme HE, Seedat S.
(2013)
BACKGROUND:
The prevalence and characteristics of fetal alcohol spectrum disorders (FASD) were determined in this fourth study of first-grade children in a South African community.
METHODS:
Active case ascertainment methods were employed among 747 first-grade pupils. The detailed characteristics of children within the continuum of FASD are contrasted with randomly selected, normal controls on (i) physical growth and dysmorphology; (ii) cognitive/behavioral characteristics; and (iii) maternal risk factors.
RESULTS:
The rates of specific diagnoses within the FASD spectrum continue to be among the highest reported in any community in the world. The prevalence (per 1,000) is as follows: fetal alcohol syndrome (FAS)-59.3 to 91.0; partial fetal alcohol syndrome (PFAS)-45.3 to 69.6; and alcohol-related neurodevelopmental disorder (ARND)-30.5 to 46.8. The overall rate of FASD is therefore 135.1 to 207.5 per 1,000 (or 13.6 to 20.9%). Clinical profiles of the physical and cognitive/behavioral traits of children with a specific FASD diagnosis and controls are provided for understanding the full spectrum of FASD in a community. The spectral effect is evident in the characteristics of the diagnostic groups and summarized by the total (mean) dysmorphology scores of the children: FAS = 18.9; PFAS = 14.3; ARND = 12.2; and normal controls, alcohol exposed = 8.2 and unexposed = 7.1. Documented drinking during pregnancy is significantly correlated with verbal (r = -0.253) and nonverbal ability (r = -0.265), negative behaviors (r = 0.203), and total dysmorphology score (r = 0.431). Other measures of drinking during pregnancy are significantly associated with FASD, including binge drinking as low as 3 drinks per episode on 2 days of the week.
CONCLUSIONS:
High rates of specific diagnoses within FASD were well documented in this new cohort of children. FASD persists in this community. The data reflect an increased ability to provide accurate and discriminating diagnoses throughout the continuum of FASD.
Arbeidstakere og omsorg for gamle foreldre - den nye tidsklemma.
Gautun H.
(2008)
Are Children of Holocaust Survivors Less Well- Adapted? A Meta-Analytic Investigation of Secondary Traumatization
Van IJzendoorn, M. H.
(2003)
H. Keilson (1979) coined the term "sequential traumatization" for the accumulation of traumatic stresses confronting the Holocaust survivors before, during, and after the war. A central question is whether survivors were able to raise their children without transmitting the traumas of their past. Through a series of meta-analyses on 32 samples involving 4,418 participants, we tested the hypothesis of secondary traumatization in Holocaust survivor families. In the set of adequately designed nonclinical studies, no evidence for the influence of the parents' traumatic Holocaust experiences on their children was found. Secondary traumatization emerged only in studies on clinical participants, who were stressed for other reasons. A stress-diathesis model is used to interpret the absence of secondary traumatization in nonclinical offspring of Holocaust survivors.
Are parental ADHD problems associated with a more severe clinical presentation and greater family adversity in children with ADHD?
Agha, S. S., Zammit, S., Thapar, A., & Langley, K.
(2013)
Although Attention Deficit Hyperactivity Disorder (ADHD) is recognised to be a familial and heritable disorder, little is known about the broader family characteristics of having a parent with ADHD problems. The main aim of this study was to investigate the relationship between parent ADHD problems, child clinical presentation and family functioning in a sample of children with ADHD. The sample consisted of 570 children with ADHD. Child psychopathology was assessed using a semi-structured diagnostic interview. Questionnaires were used to assess ADHD in the parents (childhood and current symptoms), family environment and mother/father-child relationship. Parental ADHD problems were associated with a range of adverse clinical outcomes in children with no difference in effects for mothers with ADHD problems compared to fathers with ADHD problems. Levels of maternal hostility were higher in families where mothers had ADHD problems, but reduced where fathers had ADHD problems. Parental ADHD problems index higher risk for more severe clinical presentation of ADHD in children and higher levels of family conflict (where there are maternal but not paternal ADHD problems). This study highlights that children with more severe behavioural symptoms are more likely to have a parent with persistent ADHD which has important implications when considering treatment and intervention strategies.
Are the ICF activity and participation dimensions distinct?
Jette AM, Haley SM, Kooyoomjian JT.
(2003)
Objective: To test the hypothesis that distinct Activity and
Participation dimensions of the International Classification
of Functioning, Disability, and Health could be identified
using physical functioning items drawn from the Late Life
Function and Disability Instrument.
Design: A cross-sectional, survey design was employed.
Subjects: The sample comprised 150 community-dwelling
adults aged 60 years and older.
Methods: Exploratory factor analysis was used to identify
interpretable dimensions underlying 48 physical functioning
questionnaire items.
Results: Findings revealed that one conceptual dimension
underlying these physical functioning items was not suffi-
cient to adequately explain the data (X2 = 2383; p 0.0001).
A subsequent solution produced 3 distinct, interpretable
factors that accounted for 61.1% of the variance; they were
labeled: Mobility Activities (24.4%), Daily Activities
(24.3%), and Social/Participation (12.4%). All 3 factors
achieved high internal consistency with coefficient alphas of
0.90 or above.
Conclusion: Within physical functioning, distinct concepts
were identified that conformed to the dimensions of Activity
and Participation as proposed in the ICF. We believe this is
the first empirical evidence of separate Activity and
Participation dimensions within the International Classification
of Functioning, Disability, and Health classification.
Article: Specialized substance abuse treatment for women and their children. An analysis of program design
Uziel-Miller ND, Lyons JS
(2000)
In the present study, 36 specialized substance abuse treatment programs for women and their children were identified and chosen for review. These programs provide a wide range of services including substance abuse, mental health and medical treatment, life skills training (i.e. vocational and parenting training), and social services (i.e. child care and transportation). A cluster analysis was conducted, and three distinct patterns of program design were identified. Results suggest that programs vary considerably regarding the extent to which comprehensive services are provided and to whom they are offered. Many programs that appear to be comprehensive fail to provide the full range of services to all those who need them. In particular, many programs for pregnant women seem to focus almost exclusively on pregnancy-related issues. As such, specialized substance abuse treatment for women may be at risk for becoming too specialized. Recommendations are made for future substance-related program planning for women and their children.
Articles: Psychosocially enhanced treatment for cocaine-dependent mothers Evidence of efficacy
Volpicelli JR, Markman I, Monterosso J, Filing J, O'Brien CP.
(2000)
Eighty-four cocaine-dependent mothers were randomly assigned either to a case management-oriented outpatient treatment program (CM), or to a psychosocially enhanced treatment program (PET). Both programs included onsite child care and both offered daily group therapy sessions. Subjects randomized to the PET condition were offered a variety of additional onsite services designed to meet their special psychosocial needs including parenting skills class, access to a psychiatrist, individual therapy sessions, and GED class. Patients in the CM program could gain access to these services only through referrals to community resources. Program retention was significantly better for patients in the PET condition. In addition, while the mean number of days of cocaine use decreased from baseline in both groups, the PET group had significantly fewer days of cocaine use at 12-month follow-up than the CM group. These results show that providing psychosocial enhancement services onsite can improve treatment outcome for cocaine-dependent mothers.
Articles: Psychosocially enhanced treatment for cocaine-dependent mothers Evidence of efficacy.
Volpicelli JR, Markman I, Monterosso J, Filing J, O'Brien CP.
(2000)
Eighty-four cocaine-dependent mothers were randomly assigned either to a case management-oriented outpatient treatment program (CM), or to a psychosocially enhanced treatment program (PET). Both programs included onsite child care and both offered daily group therapy sessions. Subjects randomized to the PET condition were offered a variety of additional onsite services designed to meet their special psychosocial needs including parenting skills class, access to a psychiatrist, individual therapy sessions, and GED class. Patients in the CM program could gain access to these services only through referrals to community resources. Program retention was significantly better for patients in the PET condition. In addition, while the mean number of days of cocaine use decreased from baseline in both groups, the PET group had significantly fewer days of cocaine use at 12-month follow-up than the CM group. These results show that providing psychosocial enhancement services onsite can improve treatment outcome for cocaine-dependent mothers.
Assessing Family Caregiver Needs
AARP Public Policy Institute
(2012)
Caregiver assessment is a systematic process of gathering information about a
caregiving situation to identify the specific problems, needs, strengths, and resources
of the family caregiver, as well as the ability of the caregiver to contribute to the needs
of the care recipient. Effectively assessing and addressing caregiver needs can maintain
the health and well-being of caregivers, sustain their ability to provide care, prevent or
postpone nursing home placement, and produce better outcomes for the care recipient.
Assessment of antisocial behavior: Development of an instrument
Zucker RA, Noll RB.
(1980)
Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers
Joseph S, Becker S, Becker F, Regel S.
(2009)
BACKGROUND: Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects. METHOD: Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited. RESULTS: Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported. CONCLUSION: The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.
Assessment of everyday functioning in young children with disabilities: An ICF-based analysis of concepts and content of the Pediatric Evaluation of Disability Inventory
Östensjö S, Bjorbäkmo W, Brogren Carlberg E, Völlestad NK.
(2006)
BACKGROUND:
Assessment of everyday functioning in children may depend to a considerable extent on the framework used to conceptualise functioning and disability. The Pediatric Evaluation of Disability Inventory (PEDI) has incorporated the mediating role of the environment on disability, using different measurement scales. The construction of the Functional Skills scales, which measure capability, and the Caregiver Assistance scales, which measure performance, was based on the Nagi disablement scheme. The International Classification of Functioning, Disability and Health (ICF) represents a new framework of functioning and disability that could be used to compare the measurement constructs and the content of different outcome measurements.
PURPOSE:
To examine the conceptual basis and the content of the PEDI using the ICF.
METHOD:
Phrases that describe the conceptual basis of the PEDI scales and of the ICF classifications were systematically collected and compared. Two researchers classified the item content of the Functional Skills scales independently before consensus was reached.
RESULTS:
The analyses indicate that the conceptual basis of the PEDI scales to a large extent match the ICF concepts of activity, participation and environmental factors. Both the PEDI and the ICF use the constructs of capacity and performance, but differ in how to operationalise these constructs. The classification of the Functional Skills scales shows that the PEDI primarily is a measure of activities and participation. The frequently use of environmental codes to classify the context of the requested functions demonstrates that the PEDI has incorporated the environment into the assessment.
CONCLUSIONS:
Our analyses indicate that the ICF could serve as a conceptual framework to clarify the measurement construct of the PEDI scales, and as taxonomy to describe and clarify the item content of the Functional Skills scales. Both as framework and taxonomy the ICF showed limitations in covering functioning in early childhood.
Assessment of informal carers: what implications will the new Strategy for Carers have?
Mackenzie, A & Greenwood, N.
(2008)
Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?
Scharlach, A.E., Gustavson, K. & Dal Santo, T. S.
(2007)
Abstract
PURPOSE:
This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients.
DESIGN AND METHODS:
Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services.
RESULTS:
Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers.
IMPLICATIONS:
Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.
Assisting people with multiple disabilities actively correct abnormal standing posture with a Nintendo Wii balance board through controlling environmental stimulation
Shih CH, Shih CT, Chu CL.
(2010)
The latest researches adopted software technology turning the Nintendo Wii Balance Board into a high performance change of standing posture (CSP) detector, and assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture). This study extends Wii Balance Board functionality for standing posture correction (i.e., actively adjust abnormal standing posture) to assessed whether two persons with multiple disabilities would be able to actively correct their standing posture by controlling their favorite stimulation on/off using a Wii Balance Board with a newly developed standing posture correcting program (SPCP). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Data showed that both participants significantly increased time duration of maintaining correct standing posture (TDMCSP) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.
Assistive technology: Interventions for individuals with severe/profound and multiple disabilities.
Lancioni, G. E., Sigafoos, J., O'Reilly, M. F., & Singh, N. N.
(2012)
For people with severe/profound and multiple disabilities, managing the basic necessities of daily life often poses myriad challenges. Despite great odds, advances in assistive technology are making a difference in these individuals' lives. Advances in microswitches, voice outcome communication aids, and computer-based systems are creating new opportunities for living independently, improving basic life skills, and reducing problem behaviors among individuals with combined motor, sensory, and intellectual disabilities.
This unique volume examines how education and rehabilitation can improve the lives of even those individuals most affected by severe/profound and multiple disabilities. Interventions currently in use and in experimental stages are surveyed in terms of how they work and their applicability to clients with various needs. In addition, it examines the characteristics of developmentally disabled populations and offers guidelines for choosing suitable technologies. It presents empirical evidence on the advances in improving interaction with caregivers, control of the home environment, handling self-care tasks, and other core skills.
Assistive Technology examines interventions that are innovative, respectful of the dignity of clients, and practical for ongoing use, including:
• Microswitches in habilitation programs.
• Speech-generating devices for communication and social development.
• Instructional technology for promoting academic, work, and leisure skills.
• Assistive technology for promoting ambulation.
• Orientation systems for promoting movement indoors.
• Assistive technology for reducing problem behaviors.
A state-of-the-art guide to a growing field, Assistive Technology is an invaluable resource for researchers, clinicians, graduate students as well as clinicians and allied professionals in developmental psychology, rehabilitation and rehabilitative medicine, learning and instruction, occupational therapy, speech-language pathology, and educational technology.
Association between parents' PTSD severity and children's psychological distress: a meta-analysis
Lambert, J. E., Holzer, J., & Hasbun, A.
(2014)
The authors conducted a meta-analysis of studies on the correlation between parents' PTSD symptom severity and children's psychological status. An extensive search of the literature yielded 550 studies that were screened for inclusion criteria (i.e., parent assessed for PTSD, child assessed for distress or behavioral problems, associations between parent PTSD and child status examined). Sixty-two studies were further reviewed, resulting in a final sample of 42 studies. Results yielded a moderate overall effect size r = .35. The authors compared effect sizes for studies where only the parent was exposed to a potentially traumatic event to studies where both parents and children were exposed. A series of moderators related to sample characteristics (sex of parent, type of traumatic event) and study methods (self-report vs. diagnostic interview, type of child assessment administered) were also evaluated. The only significant moderator was type of trauma; the effect size was larger for studies with parent-child dyads who were both exposed to interpersonal trauma (r = .46) than for combat veterans and their children (r = .27) and civilian parent-child dyads who were both exposed to war (r = .25). Results support the importance of considering the family context of trauma survivors and highlight areas for future research.
Association between the caregiver's burden and physical activity in community-dwelling caregivers of dementia patients
Hirano A, Suzuki Y, Kuzuya M, Onishi J, Hasegawa J, Ban N, et al.
(2011)
Physical activity in the elderly has a significant influence on their health status. Studies have shown that elderly caregivers have fewer physical activities relative to non-caregivers. The present study aimed to identify factors associated with lower physical activity in elderly caregivers of demented patients. A cross-sectional survey of 50 elderly caregivers living with patients diagnosed with Alzheimer's-type dementia showed that the Zarit caregiver burden interview (ZBI) scores were significant predictors of physical activity measured by the questionnaire score (QS) of physical activities. Among the three subscales of the QS, it was only leisure time activity scores (LS) that the ZBI scores significantly predicted. The numbers of chronic diseases were associated with lower household activity scores (HS) and sport activities scores (SS). Physical activities, in particular leisure activities, were found to be inversely associated with care burden assessed by the ZBI. Interventions to increase the physical activity levels of older caregivers may improve their health status and quality of life.
Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort
Keysor JJ, Jette AM, Coster WJ, Bettger JP, Haley SM.
(2006)
Keysor JJ, Jette AM, Coster W, Bettger JP, Haley SM. Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort.
Objective
To examine whether home and community environmental barriers and facilitators are predictors of social and home participation and community participation at 1 and 6 months after discharge from an acute care or inpatient rehabilitation hospital.
Design
Cohort study.
Setting
Postacute care.
Participants
Adults (N=342) age 18 years or older with a diagnosis of complex medical, orthopedic, or neurologic condition recruited from acute care and inpatient rehabilitation facilities. The mean age ± standard deviation of participants was 68±14 years; 49% were women and 92% were white.
Interventions
Not applicable.
Main Outcome Measures
Participation in social, home and community affairs as assessed with the Participation Measure for Post-Acute Care.
Results
Adjusting for covariates, 1 month after discharge a greater presence of home mobility barriers (P<.01) was associated with less social and home participation; whereas greater community mobility barriers (P<.01) and more social support (P<.001) were associated with greater participation. At 6 months, social support was the only environmental factor associated with participation after adjusting for covariates.
Conclusions
This study provides new empirical evidence that environmental barriers and facilitators do influence participation in a general rehabilitation cohort, at least in the short term.
Key Words
Disabled persons; Environment; Outcome assessment (health care); Rehabilitation
Supported by the National Institute of Disability and Rehabilitation Research, U.S. Department of Education (grant no. H133B990005), the National Institute of Child Health and Human Development (grant no. 5 K12 HD043444-02), and the Arthritis Foundation (arthritis investigator award).
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.
Adult Attention Deficit Hyperactivity Disorder (ADHD): public health implications
Newlove-Delgado, T., & Stein, K.
(2012)
Adult Attention Deficit Hyperactivity Disorder and Parenting Styles
Sabagh, A. K., Khademi, M., Noorbakhsh, S., Razjooyan, K., & Arabgol, F.
(2016)
The aim of the present study was to compare the parenting styles in parents with and without adult attention deficit hyperactivity disorder (ADHD) who had children with ADHD. It was a case-control study with convenience sampling strategy. Participants were recruited from the parents of previously diagnosed children with ADHD referred to Imam Hossein Hospital, Tehran/ Iran. Ninety parents with adult ADHD and 120 normal parents were chosen by Conner's Adult ADHD Screening Scale (CAARS) and psychiatrist interview. Using Baumrind Parenting Styles Questionnaire and Arnold Parenting Scale, parenting styles were assessed in both the groups. Results from independent samples t-test indicated that Authoritarian parenting style (F = 0.576, p 0.022) and Over reacting style (F = 7.976, p 0.045) were significantly higher in cases. On the other hand, controls were using Permissive style (F = 0.131, p 0.044) more than cases. The results are consistent with prior studies; these findings can improve the content of parent training for children with ADHD, who have adult ADHD themselves.
Adult Attention-Deficit/Hyperactivity Disorder and Driving: Why and How to Manage It.
Cox, D., Madaan, V., & Cox, B. S.
(2011)
Driving is a complex task that can be a significant challenge for individuals with attention-deficit/hyperactivity disorder (ADHD). A slight lapse in attention or inhibition while driving (not uncommon in individuals with ADHD) can result in hazardous consequences for these individuals and their families. This is also an interesting clinical scenario for the treating physician, who is always trying to optimize the various treatment options for the patient. Despite such potentially perilous consequences for society, this subject only recently has received researchers' attention. This review paper highlights the psychological differences between drivers with and without ADHD and examines differences between these groups in various driving simulation models. Research updates involving pharmacologic and nonpharmacologic interventions are discussed at length. Although the long-term effects of such interventions may not be clearly defined, there is enough evidence to suggest the public health significance of such interventions for optimally managing adult symptoms of ADHD.
Adult decisions affecting bereaved children
Cranwell, B.
(2007)
This child-centred study involved 30 young people aged 6-12 years whohad lose one or both parents.Semi-structured interviews with the children were recorded and analysed qualitatively, exploring their views of the interventions interactions of adults, peers and the school around the time of the death.Questions explored such issues as how the news was delivered, opportunities for anticipatory grieving, participation in rites of passage and sources of support.The results confirm that overprotection in breavement, echoedin the reluctance of adult gatekeepers to allow children to participate in research, does not recognise children's needs and can hinder the grieving process and erode self-esteem.
Adult health and relationship outcomes among women with abuse experiences during childhood
Cannon, E. A., Bonomi, A. E., Anderson, M. L., Rivara, F. P., & Thompson, R. S.
(2010)
Associations between child abuse and/or witnessing intimate partner violence (IPV) during childhood and women's health, adult IPV exposure, and health care use were examined. Randomly sampled insured women ages 18-64 (N = 3,568) completed a phone interview assessing childhood exposure to abuse and witnessing IPV, current health, and adult IPV exposure. Women's health care use was collected from automated health plan databases. Poor health status, higher prevalence of depression and IPV, and greater use of health care and mental health services were observed in women who had exposure to child abuse and witnessing IPV during childhood or child abuse alone, compared with women with no exposures. Women who had witnessed IPV without child abuse also had worse health and greater use of health services. Findings reveal adverse long-term and incremental effects of differing child abuse experiences on women's health and relationships.
Adult outcome of attention-deficit/hyperactivity disorder: a controlled 16-year follow-up study
Biederman, J., Petty, C. R., Woodworth, K. Y., Lomedico, A., Hyder, L. L., & Faraone, S. V.
(2012)
OBJECTIVE:
To estimate the risks for psychopathology and functional impairments in adulthood among a longitudinal sample of youth with and without attention-deficit/hyperactivity disorder (ADHD) diagnosed in childhood.
METHOD:
This was a case-controlled, 16-year (15-19 years) prospective follow-up study of ADHD. 140 boys with and 120 without DSM-III-R ADHD were recruited from pediatric and psychiatric settings. The main outcome measures were structured diagnostic interviews and measures of psychosocial, educational, and neuropsychological functioning. Data were collected from 1988 to 2006.
RESULTS:
At the 16-year follow-up, subjects with ADHD continued to significantly differ from controls in lifetime rates of antisocial, mood, anxiety, and addictive disorders, but with the exception of a higher interval prevalence of anxiety disorders (20% vs 8%; z = 2.32, P = .02) and smoking dependence (27% vs 11%; z = 2.30, P = .02), the incidence of individual disorders in the 6-year interval between the current and prior follow-up did not differ significantly from controls. At follow-up, the ADHD subjects compared with controls were significantly (P < .05) more impaired in psychosocial, educational, and neuropsychological functioning, differences that could not be accounted for by other active psychopathology.
CONCLUSIONS:
These long-term prospective findings provide further evidence for the high morbidity associated with ADHD across the life cycle, stressing the importance of early recognition of this disorder for prevention and early intervention strategies. These findings also indicate that, in adulthood, ADHD confers significant risks for impairment that cannot be accounted for by other psychopathology.
Adverse behavioral and emotional outcomes from child abuse and witnessed violence
Johnson, R. M., Kotch, J. B., Catellier, D. J., Winsor, J. R., Dufort, V., Hunter, W., & Amaya-Jackson, L.
(2002)
This article examines mental health outcomes of children who have witnessed violence in their social environment and/or have been physically abused. Participants (n = 167) come from a longitudinal study on child maltreatment. Outcomes—including depression, anger, and anxiety—are measured by the Child Behavior Checklist and the Trauma Symptom Checklist for Children. The authors used adjusted multivariate analyses to test the statistical significance of associations. The majority of children were female (57%) and non-White (64%). One third had been physically victimized; 46% had witnessed moderate-high levels of violence. Results confirm that children are negatively affected by victimization and violence they witness in their homes and neighborhoods. Victimization was a significant predictor of child aggression and depression; witnessed violence was found to be a significant predictor of aggression, depression, anger, and anxiety. Implications will be discussed.
Adverse childhood experiences predict earlier age of drinking onset: Results from a representative US sample of current or former drinkers
Rothman, EF., Edwards, EM., Heeren, T., & Hingson, RW.
(2008)
OBJECTIVE. Our goal was to determine whether adverse childhood experiences predicted the age at which drinking was initiated and drinking motives in a representative sample of current or former drinkers in the United States.
METHODS. In 2006, a probability sample of 3592 US current or former drinkers aged 18 to 39 were surveyed. Multinomial logistic regression examined whether each of 10 adverse childhood experiences was associated with earlier ages of drinking onset, controlling for demographics, parental alcohol use, parental attitudes toward drinking, and peers' drinking in adolescence. We also examined whether there was a graded relationship between the number of adverse childhood experiences and age of drinking onset and whether adverse childhood experiences were related to self-reported motives for drinking during the first year that respondents drank.
RESULTS. Sixty-six percent of respondents reported ≥1 adverse childhood experiences, and 19% reported experiencing ≥4. The most commonly reported adverse childhood experiences were parental separation/divorce (41.3%), living with a household member who was a problem drinker (28.7%), mental illness of a household member (24.8%), and sexual abuse (19.1%). Of the 10 specific adverse childhood experiences assessed, 5 were significantly associated with initiating drinking at ≤14 years of age (compared with at ≥21 years of age) after adjustment for confounders, including physical abuse, sexual abuse, having a mentally ill household member, substance abuse in the home, and parental discord or divorce. Compared with those without adverse childhood experiences, respondents with adverse childhood experiences were substantially more likely to report that they drank to cope during the first year that they used alcohol.
CONCLUSIONS. Results suggest that children with particular adverse childhood experiences may initiate drinking earlier than their peers and that they may be more likely to drink to cope with problems (rather than for pleasure or to be social).
Adverse, childhood experiences, alcoholic parents, an later risk of alcoholism and depression
Anda, RF., Whitfield, CL., Felitti, VJ., Chapman. D., Edwards, VJ., Dube, SR., & Williamson, DF.
(2002)
Abstract
OBJECTIVE:
The study examined how growing up with alcoholic parents and having adverse childhood experiences are related to the risk of alcoholism and depression in adulthood.
METHODS:
In this retrospective cohort study, 9,346 adults who visited a primary care clinic of a large health maintenance organization completed a survey about nine adverse childhood experiences: experiencing childhood emotional, physical, and sexual abuse; witnessing domestic violence; parental separation or divorce; and growing up with drug-abusing, mentally ill, suicidal, or criminal household members. The associations between parental alcohol abuse, the adverse experiences, and alcoholism and depression in adulthood were assessed by logistic regression analyses.
RESULTS:
The risk of having had all nine of the adverse childhood experiences was significantly greater among the 20 percent of respondents who reported parental alcohol abuse. The number of adverse experiences had a graded relationship to alcoholism and depression in adulthood, independent of parental alcohol abuse. The prevalence of alcoholism was higher among persons who reported parental alcohol abuse, no matter how many adverse experiences they reported. The association between parental alcohol abuse and depression was accounted for by the higher risk of having adverse childhood experiences in alcoholic families.
CONCLUSIONS:
Children in alcoholic households are more likely to have adverse experiences. The risk of alcoholism and depression in adulthood increases as the number of reported adverse experiences increases regardless of parental alcohol abuse. Depression among adult children of alcoholics appears to be largely, if not solely, due to the greater likelihood of having had adverse childhood experiences in a home with alcohol-abusing parents.
Age Order and Children’s Agency
Närvänen, A-L., & Näsman, E.
(2007)
So far, research on the welfare state has usually neglected children and childhood. In the rare attempts to include childhood in welfare state analysis, too much emphasis was placed on children as future adults. However, only a full recognition of children as human beings and citizens here and now are compatible with new social studies of childhood as well as children's rights discourses. Thus the conceptual integration of children and childhood in the welfare state is still an open question. This book closes the gap by offering the concept of generational order as theoretical tool to both childhood and welfare state research. In analogy to gender analysis, this concept is an adequate tool in providing visibility to the adult bias of traditional welfare state theories and practices. The book includes contributors from ten predominantly European countries, exploring issues of children's social and economic welfare, such as child poverty in a theoretical, methodological, and practical perspective. Together with the companion volume below â€" Flexible Childhood, also by the University Press of Southern Denmark â€" this book is the final result of COST Action A19, Children's Welfare, which has been supported by the European COST Framework.
Ageing Europe
Walker, A. and T. Maltby
(1997)
This book presents findings from recent policy oriented research undertaken by the EU's Observatory on Ageing and Older People: the most definitive account to date of socio-economic policies affecting older people and the extent of their social integration in European society. The book also presents the results from a specially commissioned Eurobarometer survey of public attitudes to ageing and older people conducted in twelve European Union countries. Overall it provides a unique and comprehensive portrait of how older people are perceived by the general public in the EU and how they view themselves and the ageing process. The book criticizes European countries for failing to come to terms with the fact of societal ageing and challenges them and the EU itself to ensure the social integration of older people
Ageing well : mobile ICT as a tool for empowerment of elderly people in home health care and rehabilitation [Diss.].
Melander Wikman, A.
(2008)
Avhandling
The ageing of Europe's population is a crucial challenge for the 21st century. Today, the mean life expectancy in Sweden is 83 years for women and 78 for men. Ageing well is a frequently used process, describing the objectives of future elderly care and rehabilitation. Enabling elderly people to live longer and independently in their homes is one goal for society as a whole. Providing health care of high quality, on equal terms for all citizens, is an important political goal in Sweden. It is a great challenge for providers to achieve elderly care of high quality and to develop products, services and technologies that meet the needs of elderly people. There is an assumption that Information and Communication Technologies (ICT) will enhance quality of life. Additionally "electronic accessibility" is one of the goals for the European Information Society to support and enable self-determination and mobility. Dimensions of empowerment such as participation and ability to influence/control one's life situation imply an approach to health care with the patient/client in focus. The aim of this thesis was to explore different dimensions of empowerment and an empowerment methodology for elderly persons in home health care, and if ICT was a useful tool in this process. A multi-method approach was used that included interviews with patients with experience of rehabilitation, interviews with elderly persons with homecare and safety alarms, exploring their needs in relation to empowerment dimensions such as autonomy, self-determination, participation and mobility, an intervention where a mobile safety alarm was tested by elderly individuals and reflective learning workshops with front line staff in home care. Different methods of analysis were used, including Grounded Theory, Latent Content analysis and Constructivist Grounded Theory together with reflections. One of the overall findings was that all patients/clients that participated in these studies had not reflected upon whether it would be possible or not, to influence care and rehabilitation. The results indicate low patient participation in and influence on, the rehabilitation process. Elderly people perceived freedom of movement as a prerequisite for participation and in one of the studies the elderly participants felt that they could influence care and be participating in one aspect, but they still wanted more support with, for example, being more physically active, like walking out doors. The overall findings show a genuine patient/client desire, but limited possibilities to influence care and rehabilitation. Put another way, patients/clients want to have influence and participate authentically, but they do not exactly know how to achieve this. All patients/clients were positive towards the professionals in care and rehabilitation. They were really grateful and admired the professionals and also identified themselves with how stressed and how overloaded with work the professionals were. This might mean that the concept interdependency is looked upon as more important than real autonomy. The patients/clients tried to be compliant and this can be understood as "learning unpretentiousness". After reflecting upon their situation they were more able to articulate their needs that were not responded to or taken care of. When ICT, as an empowering tool, was implemented, findings showed that elderly people experienced the use of a mobile safety alarm as empowering. The mobile safety alarm gave them the freedom of movement needed to be physically active and still feel safe. The positioning device was not experienced as a threat to their integrity. Mobility and safety were experienced as more important than privacy. The research findings indicate that in order to improve home health care services from the patient's/client's perspective, we need to work with the triads of participation, empowerment and mobile Information and Communication Technology. We need to critically and creatively reflect on what clients say and then try to respond positively to what we learn and shift the focusaway from 'what's life like?' and 'what should life be like?', towards the explicit action question, 'what needs to be done to make life as good as it can be?' Real improvement is more likely to be sustained with some changes in accountability.
Aging in Place in a Retirement Community: 90+ Year Olds
Paganini-Hill, A.
(2013)
Aging in place, an image of growing old in one's home and maintaining one's daily routine, is desired by most older adults. To identify variables promoting such independent living in the oldest-old, we examined the association between living situation of a population-based cohort of 90+ year olds with health and lifestyle variables. Of 1485 participants, 53% still lived in their home at a retirement community designed to foster wellness. Those living at home tended to be healthier, with smaller proportions having chronic diseases or hospitalizations in the preceding year and a greater proportion having normal functional ability. Dementia was the chronic disease most significantly related to living situation. In addition to not having dementia, not using a wheelchair or bath aid, receiving meals on wheels, and being married were jointly related to living at home. With the help of family and friends and with a medical and social support system, many 90+ year olds can age in place. This is often because they have a caregiving spouse or paid caregiver.
Aging in Sweden: Local Variation, Local Control.
Davey, A., Malmberg, B., & Sundström, G.
(2014)
Aging in Sweden has been uniquely shaped by its history-most notably the long tradition of locally controlled services for older adults. We considered how local variations and local control shape the experience of aging in Sweden and organized the paper into 3 sections. First, we examine aging in Sweden along demography, economy, and housing. Next, we trace the origins and development of the Swedish welfare state to consider formal supports (service provision) and informal supports (caregiving and receipt of care). Finally, we direct researchers to additional data resources for understanding aging in Sweden in greater depth. Sweden was one of the first countries to experience rapid population aging. Quality of life for a majority of older Swedes is high. Local control permits a flexible and adaptive set of services and programs, where emphasis is placed on improving the quality and targeting of services that have already reached a plateau as a function of population and expenditures.
Aging with a serious mental disability in the rural Northern Ontario: Family Members´experiences
Tryssenar, J., & Tremblay, M.
(2002)
As people with serious mental disabilities grow older, their primary caregivers continue to be family members. This qualitative study explored the life experiences of people aging with a preexisting serious mental disability living in rural Northern Ontario, from the perspective of family members, and it identified the factors which facilitated or impeded their relative's current and future participation in community life. Results included the challenges of rural life, lack of support by health care providers, rural service needs, caregiver responsibility, the impact of aging on the individual and the family, and future concerns. New models for effective rural programs, services, community education, and effective partnerships with family members must be investigated.
Aging with lifelong disability: Policy, program and practice issues for professionals
Bigby, Christine
(2004)
'A comprehensive text addressing this issue is welcome and this book addresses service provision for older people with disabilities from a UK, USA and Australian perspective. The book would serve as a useful reference book for Health and Social Service personnel, particularly students, from a variety of disciplines working with older adults, in the learning disability field or with older people who have lifelong physical disabilities. A particular strength is the inclusion of case vignettes that describe individual older clients with lifelong disabilities; interesting questions are posed for discussion which relate to the subject matter in each of the five sections. The vignettes are interesting and enjoyable to read and would be useful for group work/teaching purposes.' - International Journal of Geriatric Psychiatry 'This book is most welcome with an extensive review of the research and service development in the United States, the United Kingdom and Australia with illustrative vignettes and relevant questions following the first four parts of the book. Suggested literature is also part of each chapter. All in all, a book recommended for both practitioners, researchers and policy makers involved with persons with life long disability as they age.' - International Journal of Adolescent Medical Health 'In all, this book is an essential addition to the library of service provider organisations, policymakers, researchers, and families and all who wish to share in ensuring the well-being and quality lifestyles of this growing and emerging group of citizens. I see this book as a seminal text in this area.' - Marie Knox (School of Humanities and Human Services, Queensland University of Technology, Brisbane) in Intellectual Disability Australasia 'This book makes a commendable contribution in uniting thinking and strategic planning, and also through providing empirical evidence to illustrate ways forward that have meaning for older people with disabilities, their families and front-line professionals.' - from the Foreword by Gordon Grant Based on the author's 18 years' research experience and social work practice expertise, this pioneering guide provides up to date specialist knowledge about ageing with a disability in the context of the more mainstream knowledge about ageing processes. Christine Bigby uses the concept of 'successful ageing' as a framework in which to consider the issues and practicalities for older people with a lifelong disability. Bigby presents strategies for the various challenges involved in the physiological, psychological and sociological aspects of ageing and proposes an integrated framework of service development and policy directions for the implementation of these strategies. Particular focus is given to lifestyle planning, encompassing subjects such as daily activity and leisure, housing and support, advocacy, case management and health. Consideration is also given to working with older parental carers of adults with a lifelong disability to support preparation and planning for the transition from parental care.
AKK-Alternativ och kompletterande kommunikation för personer med autism.
Thunberg, G.
(2011)
Syftet med denna skrift är att beskriva olika typer av AKK-insatser till personer med autismspektrumstörning och vilken kunskap vi har om hur detta fungerat. Följande frågeställningar kommer att belysas:
Hur ser historiken kring AKK-intervention och autism ut – både i ett svenskt och internationellt perspektiv?
Vilken forskning har bedrivits inom området – vad vet vi när det gäller effekter av AKK-insatser?
Finns det belägg för att något AKK-sätt (tecken, bilder/PECS, talande hjälpmedel) fungerar bättre eller sämre för personer med autism?
När kan och bör man starta AKK-insatser?
Hur förhåller sig AKK till tal – behöver man vara orolig för att AKK hämmar utveckling av tal?
Vad verkar vara viktigt när det gäller intervention och metodik för att få AKK att fungera för gruppen?
Hur ser framtiden ut – särskilt med tanke på den enorma utvecklingen av digital och mobil teknik?
Alcohol consumption among pregnant women in a Swedish sample and its effects on the newborn outcomes
Comasco, E., Hallberg, G., Helander, A., Oreland, L., & Sundelin-Wahlsten, V.
(2012)
BACKGROUND:
Little is known about the effects of low levels of maternal alcohol intake on the neuropsychological development of the child. This study is part of an ongoing investigation on maternal drinking and presents data on demographic variables, maternal alcohol use, and birth outcomes from that study.
METHODS:
The sample comprised 2,264 women from a Swedish antenatal clinic. Retrospective self-report data were collected on alcohol consumption before and during pregnancy, using the Alcohol Use Disorders Identification Test (AUDIT), and on nicotine use. Specific alcohol biomarkers for excessive drinking, carbohydrate-deficient transferrin (CDT) in serum and phosphatidylethanol (PEth) in whole blood, were determined during mid-pregnancy in a subsample of the women. Data on labor and early characteristics of the child were also assessed.
RESULTS:
Before pregnancy, 89% of the women regularly consumed alcohol and 49% reported occasional or frequent binge drinking. Nicotine was used by 15% before and by 5% during pregnancy. During pregnancy, 12% continued using alcohol and 5% also admitted binge drinking. However, all alcohol biomarker values were below the reporting limits (CDT ≤ 1.7% disialotransferrin; total PEth < 0.1 μmol/L). Self-reported drinking during pregnancy was associated with a higher AUDIT score before pregnancy, nicotine use at the time of the first prenatal visit, older age, and previous legal abortions.
CONCLUSIONS:
The AUDIT questionnaire and 2 specific alcohol biomarkers were used in routine maternity care to collect information about drinking during pregnancy and thereby to identify children at risk for alcohol-related complications. While the AUDIT results suggested that a significant number of women continued using alcohol during pregnancy, implying a risk for fetal disorders, the biomarkers showed negative test values thus indicating only modest drinking levels.
Alternativ och Kompletterande kommunikation (AKK) i teori och praktik.
Heister-Trygg, B. and I. Andersson
(2009)
Boken är skriven för personer som i sin yrkesverksamhet ansvarar för området AKK, t ex logopeder, arbetsterapeuter och pedagoger, och för både grundutbildning och vidareutbildning.
Huvudförfattarena för denna reviderade upplaga är logopeder och driver sedan många år Södra regionens kommunikationscentrum, SÖK, och har mångårig erfarenhet av AKK-området bland såväl barn som vuxna.
Ur innehållet: Teorier kring tal, språk och kommunikation, alternativa och kompletterande kommunikationssätt, omgivningsfaktorer, metodik, etik, olika funktionsnedsättningar m m. Genom boken får vi följa ett antal personer i varierande ålder och med olika svårigheter och de ställningstagande som görs för att dessa ska få bästa möjliga förutsättningar att kunna kommunicera.
Alzheimer's disease treatment: assessing caregiver preferences for mode of treatment delivery
Abetz, L., Rofail, D., Mertzanis, P., Heelis, R., Rosa, K., Tellefsen, C., et al.
(2009)
Ambient assisted living technology-mediated interventions for older people and their informal carers in the context of healthy ageing: A scoping review
Nilsson, Maria Y ; Andersson, Stefan ; Magnusson, Lennart ; Hanson, Elizabeth
(2021)
There is a growing demand for health and social care services to provide technology-mediated interventions that promote the health and well-being of older people with health or care needs and of their informal carers. The objectives of this study were to scope and review the nature and extent of prior intervention studies involving ambient assisted living technology-mediated interventions for older people and their informal carers, and how and in what ways (if any) the goals and aims of these interventions reflected the domains of the World Health Organization framework for healthy ageing. We conducted a scoping review. Data were collected between June and October 2018 with an updated search in October 2020. A total of 85 articles were eligible for inclusion. Nine categories described the aims and content of the included studies. The healthy ageing domain "Ability to meet basic needs" was mirrored in four categories, whereas "Ability to contribute to society" was not addressed at all. The ways in which domains of healthy ageing are mirrored suggest that there is an emphasis on individual factors and individual responsibility, and a lack of attention given to broader, environmental factors affecting healthy ageing. Only a few of the studies used a dyadic approach when assessing health outcomes concerning older people and their informal carers.
Ambiguous Loss in Families of Children with Autism Spectrum Disorders
O'Brien, M.
(2007)
Learning that a child has a lifelong developmental disorder is stressful & challenging to any family, yet it is clear that some families adapt & adjust more readily than others. In this article, it is proposed that a diagnosis of an autism spectrum disorder (ASD) is especially likely to be experienced as ambiguous loss. Interviews with mothers of children with ASDs are used to identify whether mothers express feelings of ambiguous loss when talking about their child. Then, a specific hypothesis derived from ambiguous loss theory -- that higher levels of identity ambiguity in mothers are linked to higher levels of depressive symptoms & perceived stress independent of the severity of the child's diagnosis -- is tested & found to be supported. Recognition of ambiguous loss in families of children with ASDs would help professionals provide more effective support & assistance to families. Tables, References. Adapted from the source document.
AMIGO [Elektronisk resurs] : ett samlat grepp för anhörigkontakt : en rapport från tre projekt inom Teknik för äldre
Fagerberg, Å., Lundgren, M., Bondesson, J., & Simonsson, J.
(2010)
An Alternative Approach for the Analyses and Interpretation of Attachment Sort Items
KIRKLAND, J., BIMLER, D., DRAWNEEK, A., MCKIM, M. & SCHOLMERICH, A.
(2004)
Attachment Q‐Sort (AQS) is a tool for quantifying observations about toddler/caregiver relationships. Previous studies have applied factor analysis to the full 90 AQS item set to explore the structure underlying them. Here we explore that structure by applying multidimensional scaling (MDS) to judgements of inter‐item similarity. AQS items are arranged in the MDS solution along three easily interpretable axes: a model that is compatible with but more parsimonious than factor analysis solutions. This geometrical approach suggests ways to modify the AQS—primarily a research tool—to make it more practical for clinical applications. Sets of AQS data are represented and interpreted in the three‐dimensional model as vectors. Summaries at a finer‐grained level are obtained by finding points in the model where variability across datasets is greatest. We report re‐analyses of archival (published) data, and also data collected with streamlined procedures more suitable in the field. Although not reported here, collection and analysis can both be performed online via a website. The general methodology is not restricted to the current application of toddler attachment.
An analysis of the caregiver's burden and the "breaking-point" when home care becomes inadequate
Annerstedt L, Elmståhl S, Ingvad B, Samuelsson S.
(2000)
The burden of caregivers of patients suffering from of Alzheimer type dementia (DAT) and vascular dementia (VD) was analysed at the critical time, the "breaking-point", when home care becomes insufficient and/or inadequate and the caregiver burden has probably reached its upper limit. Primary family caregivers of 39 DAT and 40 VD patients who were being considered for relocation into group-living units were studied. Total caregiving burden and different aspects of the burden: general strain, isolation, disappointment, and emotional involvement, were correlated with the patients' diagnoses, abilities, and symptoms. Closer kinship to the patient imposed a heavier burden. The caregiver's gender, social class, and previous institutionalization of the patient did not influence the caregiver burden. There was no significant correlation between the patients' ADL ability or cognition and the burden. A higher level of disappointment was found among the VD carers. Different symptomatology in patients of the two diagnostic groups was related to special aspects of the burden. Multiple regression analysis showed that the amount of caregiving time each week and impaired sense of own identity, misidentifications, clinical fluctuations, and nocturnal deterioration in the patients predicted the breaking-point.
An assessment of the relationship between informal caring and quality of life in older community-dwelling adults -- more positives than negatives
Ratcliffe J, Lester LH, Couzner L, Crotty M.
(2013)
The main objective of the study was to apply the recently developed Index of Capability (ICECAP-O) instrument to measure and value the quality of life of a representative sample of the older South Australian population (aged>=65 years) according to carer status. A Health Omnibus survey including the ICECAP-O instrument, carer status (informal carer vs. non-carer) and several socio-demographic questions was administered in 2009 as a face-to-face interview to 789 individuals aged 65 years or older in their own homes. A total of 671 individuals (85%) characterised themselves as a non-carer and 115 individuals (15%) characterised themselves as an informal carer. In general, carers exhibited relatively high quality of life as measured by the ICECAP-O, with carers having comparable mean ICECAP-O scores to non-carers in the general population [carers: mean (SD) 0.848 (0.123), non-carers: mean (SD) 0.838 (0.147)]. The results of the multivariate regression model for the total sample indicated statistically significant variations in overall ICECAP-O scores according to age (with younger participants tending to have slightly higher scores on average), country of birth (with those participants who were born in Australia having higher scores on average than those who were born elsewhere) and household income (with participants with higher income levels having higher scores on average). The results of the multivariate regression model differentiated by carer status also indicated some important differences. Specifically, average ICECAP-O scores were noticeably lower for carers who are separated or divorced and for carers who lived alone and these differences were statistically significant. The study findings provide support for the existence of process utility in informal care-giving. The provision of informal care may be associated with a positive impact upon quality of life for many caregivers, which may mediate the negative aspects arising from the burden associated with informal care-giving.
An efficacy study of a combined parent and teacher management training programme for children with ADHD
Östberg, M. and A.-M. Rydell
(2012)
Background: Several parent training programmes and behavioural teacher training programmes built on learning theory have been developed for problem prevention and treatment of attention-deficit/hyperactivity disorder (ADHD) and/or oppositional defiant disorder (ODD) during the last few decades. Group format has often been used for parent training but single-subject designs are more common in teacher training. More studies have focussed on pre-school children than on older children, and a minority have been conducted in public mental health settings. Aim: This study aimed to evaluate a combined parent and teacher manual-based group training programme for children with ADHD conducted by the staff at a child and adolescent psychiatric clinic in Sweden. Method: The intervention was a modified version of Barkley's programme. Children were randomized to an Intervention or a Control group. Sixty-one parents and 68 teachers answered questions about ADHD and ODD symptoms, and about behavioural problems when the study started and at a 3-month follow-up. Results: Results showed that the intervention resulted in a reduction of the number of children who met DSM-IV criteria for ADHD and/or ODD. Effects were more pronounced in the home setting than in the school setting, and were further accentuated when both parents and teachers of the same child took part in the intervention. Teachers with more problematic classroom situations benefited most from the intervention. Conclusion: The programme, "Strategies in Everyday Life", has, in a regular clinical setting, demonstrated promising effects on children's disruptive behaviour, and a clinical implication was to recommend involving both parents and teachers in the programme.
An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods
Rothera, I., Jones, R., Harwood, R., Avery, A. J., Fisher, K., James, V., et al.
(2008)
An experimental evaluation of theory-based mother and mother-child programs for children of divorce
Wolchik, S.A., West, S.G., Sandler, I.N., Tein, J., Coatsworth, D. & Lengua, L.
(2000)
This study evaluated the efficacy of 2 theory-based preventive interventions for divorced families: a program for mothers and a dual component mother-child program. The mother program targeted mother-child relationship quality, discipline, interparental conflict, and the father-child relationship. The child program targeted active coping, avoidant coping, appraisals of divorce stressors, and mother-child relationship quality. Families with a 9- to 12-year-old child (N = 240) were randomly assigned to the mother, dual-component, or self-study program. Postintervention comparisons showed significant positive program effects of the mother program versus self-study condition on relationship quality, discipline, attitude toward father-child contact, and adjustment problems. For several outcomes, more positive effects occurred in families with poorer initial functioning. Program effects on externalizing problems were maintained at 6-month follow-up. A few additive effects of the dual-component program occurred for the putative mediators; none occurred for adjustment problems
An experimental intervention with families of substance abusers: one-year follow-up of the focus on families project
Catalano RF, Gainey RR, Fleming CB, Haggerty KP, Johnson NO.
(1999)
AIMS:
Children whose parents abuse drugs are exposed to numerous factors that increase the likelihood of future drug abuse. Despite this heightened risk, few experimental tests of prevention programs with this population have been reported. This article examines whether intensive family-focused interventions with methadone treated parents can reduce parents' drug use and prevent children's initiation of drug use.
DESIGN:
Parents were assigned randomly into intervention and control conditions and assessed at baseline, post-test, and 6 and 12 months following the intervention. Children were assessed at baseline, and 6- and 12-month follow-up points.
SETTING:
Two methadone clinics in Seattle, Washington.
PARTICIPANTS:
One hundred and forty-four methadone-treated parents, and their children (n = 178) ranging in age from 3 to 14 years old.
INTERVENTION:
The experimental intervention supplemented methadone treatment with 33 sessions of family training combined with 9 months of home-based case management. Families in the control condition received no supplemental services.
MEASUREMENT:
Parent measures included: relapse and problem-solving skills, self-report measures of family management practices, deviant peer networks, domestic conflict and drug use. Child measures included self-report measures of rules, family attachment, parental involvement, school attachment and misbehavior, negative peers, substance use and delinquency.
FINDINGS:
One year after the family skills training, results indicate significant positive changes among parents, especially in the areas of parent skills, parent drug use, deviant peers and family management. Few changes were noted in children's behavior or attitudes.
CONCLUSIONS:
Programs such as this may be an important adjunct to treatment programs, helping to strengthen family bonding and to reduce parents' drug use.
An experimental intervention with families of substance abusers: one-year follow-up of the focus on families project
Catalano RF, Gainey RR, Fleming CB, Haggerty KP, Johnson NO.
(1999)
AIMS:
Children whose parents abuse drugs are exposed to numerous factors that increase the likelihood of future drug abuse. Despite this heightened risk, few experimental tests of prevention programs with this population have been reported. This article examines whether intensive family-focused interventions with methadone treated parents can reduce parents' drug use and prevent children's initiation of drug use.
DESIGN:
Parents were assigned randomly into intervention and control conditions and assessed at baseline, post-test, and 6 and 12 months following the intervention. Children were assessed at baseline, and 6- and 12-month follow-up points.
SETTING:
Two methadone clinics in Seattle, Washington.
PARTICIPANTS:
One hundred and forty-four methadone-treated parents, and their children (n = 178) ranging in age from 3 to 14 years old.
INTERVENTION:
The experimental intervention supplemented methadone treatment with 33 sessions of family training combined with 9 months of home-based case management. Families in the control condition received no supplemental services.
MEASUREMENT:
Parent measures included: relapse and problem-solving skills, self-report measures of family management practices, deviant peer networks, domestic conflict and drug use. Child measures included self-report measures of rules, family attachment, parental involvement, school attachment and misbehavior, negative peers, substance use and delinquency.
FINDINGS:
One year after the family skills training, results indicate significant positive changes among parents, especially in the areas of parent skills, parent drug use, deviant peers and family management. Few changes were noted in children's behavior or attitudes.
CONCLUSIONS:
Programs such as this may be an important adjunct to treatment programs, helping to strengthen family bonding and to reduce parents' drug use.
An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers
Low JT, Roderick P, Payne S.
(2004)
OBJECTIVES:
To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life.
SETTING:
East Dorset Health Authority.
SUBJECTS:
Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial.
DESIGN:
Qualitative methods.
METHODS:
Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life.
RESULTS:
Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves.
CONCLUSIONS:
Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.
An exploration of different models of multi-agency key worker services for disabled children: Effectiveness and costs. Research report 656
Greco, V., Sloper, P., Webb, R., & Beecham, J.
(2005)
A key worker has been described as a named person whom the family can approach
for advice about, and practical help with, any problem related to the disabled child.
Provision of 'key workers' or 'care coordinators' for disabled children and their families, working across health, education and social services, has often been recommended in policy guidance, most recently in the Children's National Service Framework. Up to now, research has shown that less than a third of families with severely disabled children have a key worker, but compared to those who do not have a key worker, those who do show benefits in terms of relationships with and access to services and overall quality of life. However, as more key worker services have been developed, different models of service and ways of working have proliferated and there has been no research on the outcomes for families of different types of services. This study aimed to explore the effectiveness of different models of multi-agency key worker services.
Anhörig - omsorg och stöd
Johansson, L.
(2007)
Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.
Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.
Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre.
Anhörig - omsorg och stöd
Johansson, L.
(2007)
Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.
Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.
Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre.
Anhörig 300 i Dalarna : Hur gick det? (Arbetsrapport / Dalarnas forskningsråd)
Edkvist, I.
(2002)
Anhörig 300 i Hallands län : En sammanställning av kommunernas slutrapporter till Socialstyrelsen (Meddelandeserien / NFoU - FoU-enheten, kommunförbundet Halland ; 2002:3).
Orwén, R.
(2002)
Anhörig i nöd och lust
Johansson L.
(2012)
Den här boken vänder sig till dig som vårdar, stödjer eller hjälper din make eller maka, partner, dina barn, syskon, en förälder eller någon annan närstående.
Förhoppningsvis ska den guida dig till att efter förmåga, förutsättningar och med stöd och hjälp finna balans mellan att hjälpa andra och livet i övrigt.
Budskapet är att du ska tänka på dig själv, både för ditt eget bästa och för den du hjälper.
För att kunna hjälpa andra måste också du själv få hjälp.
Anhörig i nöd och lust
Johansson, L.
(2012)
Den här boken vänder sig till dig som vårdar, stödjer eller hjälper din make eller maka, partner, dina barn, syskon, en förälder eller någon annan närstående. Förhoppningsvis ska den guida dig till att efter förmåga, förutsättningar och med stöd och hjälp finna balans mellan att hjälpa andra och livet i övrigt. Budskapet är att du ska tänka på dig själv, både för ditt eget bästa och för den du hjälper. För att kunna hjälpa andra måste också du själv få hjälp.
Anhörig/närståendestöd i Skaraborg : Ett samverkansprojekt mellan kommuner, primärvård och sjukhus.
Lindberg, T
(2008)
Anhörig/närståendestöd i Skaraborg : ett samverkansprojekt mellan kommuner, primärvård och sjukhus. Fokus på anhöriga till äldre 5.
Lindberg, T.
(2008)
Anhöriga 300 : utveckling av anhörigstöd
Almberg, B. and K. Hellqvist
(2002)
Anhöriga får koll på omsorgen
Hugo, L.
(2010)
Anhöriga förväntas hjälpa till – utan mer inflytande
Hammarström, G.
(2008)
Anhöriga och frivilliga - lösningen på äldreomsorgens problem?
Johansson, L.
(1997)
Anhöriga Situation, behov och samhällets stöd. Litteratursammanställning
Arweson, S. and H. Edström
(2009)
Anhöriga som ger insatser till närstående med stroke. En kunskapsöversikt som beskriver olika stödprogram för anhöriga. 2016:2
Månsson Lexell Eva
(2016)
På senare år har olika typer av stödprogram utvecklats, riktade till anhöriga som vårdar, hjälper eller ger stöd till personer med stroke. Det finns dock ingen konsensus kring vilket innehåll stödprogrammen bör ha, om en viss typ av stödprogram är mer effektiva och bör rekommenderas före andra eller om det saknas en viss typ av stödprogram. Syftet med denna kunskapsöversikt var därför att identifiera och presentera relevant litteratur som beskriver stödprogram riktade till anhöriga, som på olika sätt ger stödinsatser till vuxna personer med stroke, samt stödprogrammens betydelse och eventuell effekt för anhöriga. Syftet var också att ge rekommendationer för insatser inom vård och omsorg och för framtida forskning.
Anhöriga som ger omsorg till närstående : omfattning och konsekvenser
Socialstyrelsen
(2012)
Omsorg människor emellan, det vill säga vård, hjälp eller stöd som ges till närstående på grund av sjukdom, funktionsnedsättning eller hög ålder, utgör en självklar del av livet för de allra flesta. Att ge omsorg kan handla om allt från att hjälpa med praktiska sysslor, ekonomi, kontakt med vård och omsorg, personlig omvårdnad, tillsyn, stimulans och umgänge. Den här rapporten presenterar resultaten av en befolkningsstudie med fokus uteslutande på omsorgsgivarens perspektiv som genomförts av Socialstyrelsen på uppdrag av regeringen. Studien genomfördes som en postenkät till ett slumpmässigt urval om cirka 15 000 individer i befolkningen, 18 år och äldre, under början av 2012. Studien belyser hur många som ger omsorg och till vem. Den beskriver också olika former av omsorg som ges och vad detta får för konsekvenser för omsorgsgivarens hälsa, sociala relationer, ekonomi och möjligheter att arbeta. Slutligen beskriver den erfarenheter av och förväntningarna på sjukvårdens och socialtjänstens stöd till omsorgsgivare.
Anhöriga som ger omsorg till närstående. Fördjupad studie av omfattning och konsekvenser
Socialstyrelsen
(2014)
De flesta människor hamnar någon gång i en situation där de behöver ge omsorg till en närstående på grund av sjukdom, funktionsnedsättning eller hög ålder.
Socialstyrelsen genomförde 2012 en pilotundersökning för att kartlägga anhörigomsorgens omfattning och konsekvenser. Den visade bland annat att nästan var femte person äldre än 18 år ger omsorg till en närstående och att omfattande omsorg kan få stora konsekvenser för omsorgsgivarnas hälsa, sysselsättning och livskvalitet. Den här rapporten redovisar resultaten från två studier om dessa konsekvenser: Socialstyrelsen har gjort fördjupade analyser av 2012 års data och de analyserna har kompletterats med en intervjuundersökning för att illustrera vad olika situationer av anhörigomsorg kan innebära.
Sammanfattningsvis kan Socialstyrelsen konstatera följande:
Omsorg som ges av anhöriga till närstående har en samhällsbärande funktion och är inte bara ett komplement till hälso- och sjukvård och socialtjänst. I vissa fall ersätter anhörigomsorgen samhällets insatser för att de berörda vill ha det så, eller för att insatserna inte upplevs vara tillräckliga.
I de flesta fall är omsorgsgivandet ett frivilligt åtagande men omfattningen och formerna är inte alltid självvalda. Det finns brister i samordningen av insatser från hälso- och sjukvård och socialtjänst för personer med stora vård- och omsorgsbehov, vilket ökar belastningen för de anhöriga som nödgas kompensera för det.
Omsorgens omfattning har stor betydelse för graden av påverkan hos anhöriga. Ett stort omsorgsåtagande riskerar att försämra hälsan och livskvaliteten hos de anhöriga samt möjligheterna att förvärvsarbeta och studera, medan ett mindre omfattande åtagande kanske inte har någon negativ påverkan alls. Resultatet visar också att olika konsekvenser för hälsa och förvärvsarbete hänger nära samman och att de i sin tur formar livskvaliteten.
Relationen mellan den som ger och den som tar emot omsorg har betydelse för hur givaren upplever situationen. De som ger omsorg till en ett barn tycks påverkas i högre grad när det gäller förvärvsarbete, ekonomi och livskvalitet, medan den som ger omsorg till en make, maka eller partner tycks påverkas i högre grad vad gäller hälsa. Anhöriga i åldrarna 30–44 år som ger omsorg till en närstående tycks påverkas mer än andra ål-dersgrupper vad gäller psykisk och fysisk hälsa, ekonomi och möjligheter till förvärvsarbete.
För att säkerställa att omsorg som ges av anhöriga är frivillig behöver flera olika aktörer mer kunskap om anhörigas behov. Det gäller bland annat hälso- och sjukvården, socialtjänsten, arbetsgivare, Försäkringskassan och skolan. Stöd och information som erbjuds anhöriga omsorgsgivare behöver vara individuellt utformat och anpassat till både den som ger och tar emot omsorg. Patient- och anhörigorganisationer kan bidra med viktig kunskap i behovsinventeringar och vid utformande av stöd till anhöriga omsorgsgivare.
Det är angeläget att fortsätta följa upp omfattningen och konsekvenserna av anhörigomsorg. Närmare en femtedel av den vuxna befolkningen ger omsorg till närstående. De omsorgsgivare som ger omfattande omsorg drabbas av konsekvenser vad gäller såväl hälsa som förvärvsarbete och livskvalitet och är därmed en utsatt grupp. Kommande uppföljningar bör ha fokus på att identifiera de grupper som i högre utsträckning påverkas negativt av att ge omsorg för att kartlägga vilka särskilda behov de har samt hur samhället på bästa sätt kan möta dessa personers behov och stödja dem i omsorgsarbetet. Därtill är det angeläget att följa upp anhöriga omsorgsgivare som är utrikes födda, eftersom tidigare studier inte lyckats fånga denna grupp.
Does individual treatment for alcoholic fathers benefit their children? A longitudinal assessment
Andreas JB, O'Farrell TJ, Fals-Stewart W.
(2006)
Psychosocial adjustment in children of alcoholics (COAs; N = 125) was examined before and at 3 follow-ups in the 15 months after their fathers entered alcoholism treatment. Before their fathers' treatment, COAs exhibited greater overall and clinical-level symptomatology than children from the demographically matched comparison sample, but they improved significantly following their fathers' treatment. Children of stably remitted fathers were similar to their demographic counterparts from the comparison sample and had fewer adjustment problems than children of relapsed fathers, even after accounting for children's baseline adjustment. Thus, COAs' adjustment improved when their fathers received treatment for alcoholism, and fathers' recovery from alcoholism was associated with clinically significant reductions in child problems. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Doktorn kunde inte riktigt laga mig : barn om sjukdom och funktionshinder och om hur vi kan hjälpa
Renlund, Christina
(2007)
Den här boken handlar om små barn som har svåra sjukdomar eller funktionsnedsättningar. Vad betyder det för ett litet barn att inte kunna gå och springa, att inte kunna se, att ha trassliga och krångliga tankar, att vara annorlunda? Christina Renlund visar hur vi kan hjälpa barnen att våga berätta om sina tankar och komma med sina frågor.
Du får väl säga som det är
Renlund Christina
(2017)
Du får väl säga som det är handlar om att vara anhörig och leva nära. Om vårt behov av varandra, om sårbarhet och kraft, om mod och rädsla och om hopp och stora livsfrågor. Det är också en bok om stolthet, tillit, livsglädje och drömmar och om de mirakel som finns i vardagen nära dem vi älskar, om de små miraklen och de stora. Vad vi kan få om vi förmår ta emot.
Föräldrars berättelser. Syskons uppväxt och frågor. Mor- och farföräldras oro och stolthet. Mostrar, fastrar, morbröder och andra närstående. De skriver om kärleken och sorgen, om vardagen, den sällsynta diagnosen och funktionsnedsättningen, om sina tankar och om det som är allra viktigast i livet - relationer, människovärde och mening.
Alla ger de oss något av det finaste de har - sin berättelse. Det är enkelt, det är vardagligt , det är storslaget. Det är en bok om vad det är att vara människa.
Skribenter: Siri Ambjörnsson, Nathalie Besèr, Zenzi Brydolf, Kristina Colliander, Axel Danielson, Frank Ekelund, Miriam Ennefors, Per Feltzin, Pernilla Glaser, Ingrid Hellegren, Imke Janoschek, Håkan Johansson, Jesper Larsson, Kristina Lindh, Gunilla Malm, Anna och Mikael Nordmark, Helene Näslund, Erika Ohlsson, Alexander Persson, Giuseppe Pozzi och Åsa Llinares Norlin, Gunnar Skarland, Arziv Suhak, Kristina och Thomas Taylor, Fredrik Westin
Du´er utviklingshemmede som foreldre?
Faureholm, Jytte
(1994)
Family Support and Empowerment: Post Autism Diagnosis Support Group for Parents.
Banach M, Iudice J, Conway L, Couse LJ
(2010)
Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study measured the effects of a six-session, co-facilitated, support group on the advocacy skills and self-efficacy of parents coping with a child's diagnosis. Statistically significant increases in the average mean scores for the three subscales of the Family Empowerment Scale were found. Implications for practice and research are discussed.
Anhörigvårdarens upplevelser av roller och känslor i relation till närstående och växelboende
Josefsson, L.
(2008)
Denna studie syftar till att se hur anhöriga, som har rollen som anhörigvårdare, beskriver sin roll i relation till sin make/maka, vilken funktion och betydelse växelboendet har för den enskilda familjen, samt hur anhörigvårdaren upplever kommunikationen mellan boendet och hemmet. För att få fram den subjektiva
upplevelsen valdes kvalitativ metod med intervjuer. Där anhörigvårdarens upplevelse är i fokus.
Anhörigvårdarens upplevelser av roller och känslor i relation till närstående och växelboende
Josefsson, L.
(2008)
Denna studie syftar till att se hur anhöriga, som har rollen som anhörigvårdare, beskriver sin roll i relation till sin make/maka, vilken funktion och betydelse växelboendet har för den enskilda familjen, samt hur anhörigvårdaren upplever kommunikationen mellan boendet och hemmet. För att få fram den subjektiva
upplevelsen valdes kvalitativ metod med intervjuer. Där anhörigvårdarens upplevelse är i fokus.
Anhörigvårdares hälsa
Erlingsson C, Magnusson L, Hanson E.
(2010)
Att vara äldre anhörigvårdare kan innebära en svårbemästrad situation,
som tär på anhörigvårdarens hälsa och välbefinnande och som till och
med kan innebära en risk för ökad dödlighet. Den ibland alltför tunga
vårdbördan kan ha ett starkt negativ inverkan på anhörigvårdarens
hälsa pga. t.ex. stress, sömnlöshet, utmattning, depression, och oro.
Dock kan anhörigvårdandet också innebära glädje och tillfredsställelse.
Denna översikt baserar sig på information i 31 svenska vetenskapliga
artiklar om äldre anhörigvårdares hälsa.
De flesta artiklar belyser olika faktorer i vårdsituationen; t.ex. tillgänglighet
eller omfattning av anhörigvårdarens sociala nätverk, anhö-
rigvårdarens ekonomiska situation, ålder, kön, fysiska symtom, bemästringsstrategier,
tillfredsställelse, betydelsen av den sjukes diagnos
eller stödets utformning. Det framträder mycket tydligt i denna översikt
att det är bakom situationsfaktorer och handlingar som de kanske
starkaste, och oftast omedvetna, motivationselementen ligger; dvs.
anhörigvårdarens övertygelser och föreställningar. Föreställningarna,
tillsammans med upplevelserna, i synnerhet av ömsesidighet i vårdandet,
bildar ett levande dynamisk system som är unikt för varje individ
och familj.
Mest betydelsefullt är att eftersträva att hjälpa anhörigvårdare att
uppleva ömsesidighet i vårdandet och att försöka förstå anhörigvårdandet
så som det sker i ett kraftfält av föreställningar om varför och
hur man bör vårda den sjuke. Utan att vara medvetna om anhörigvårdarnas
egna föreställningar och upplevelser kommer vi – professionella,
anhörigvårdare, den sjuke, familjemedlemmar och vänner –
att treva i blindo när vi försöker hjälpa till.
Slutsatsen i denna rapport är att anhörigvårdares hälsa påverkas,
förbättras eller försämras, beroende på 1) anhörigvårdarens föreställningar
om anhörigvårdandet, 2) anhörigvårdarens upplevelse av öm-
~ 8 ~
sesidighet både i familjerelationer och i relationer med berörd personal,
och 3) om lämpliga stödinsatser finns tillgängliga.
Anhörigvårdares nyttjande och upplevelser av kommunalt stöd [Elektronisk resurs]
Sköld, M. & Sundberg, S.
(2008)
Anhörigvårdares nyttjande och upplevelser av kommunalt stöd [Elektronisk resurs].
Sköld, M. & Sundberg, S.
(2008)
Anhörigvårdens olika ansikten : Tema : Nordens äldreomsorger
Omsäter, M.
(2004)
Anknytning i förskolan. Vikten av trygghet för lek och lärande
Broberg, M., Hagström, B. & Broberg, A.
(2012)
Anknytning i förskolan är en bok som visar att trygga relationer är en förutsättning för lärande, särskilt för små barn. Barn som utvecklat en trygg anknytning till minst en vuxen på förskolan litar på att de blir tröstade när behov uppstår – de kan då slappna av och ägna sig åt lek och utforskande.
Denna bok ger en grund i anknytningsteori och författarna visar med många exempel hur denna kunskap kan användas i förskolans vardag: vid inskolning, hämtning, samling, lek och vila.
Anknytning i förskolan är skriven för blivande och verksamma förskollärare och pedagoger som arbetar med de yngsta barnen i förskolan.
Anknytning i praktiken: Tillämpningar av anknytningsteorin
BROBERG, A., RISHOLM MOTHANDER, P., GRANQVIST, P. & IVARSSON, T.
(2008)
Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).
Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.
Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.
Innehåll
1. Inledning
2. Anknytning ur ett familjeperspektiv
3. Klinisk spädbarnspsykologi
4. Anknytningsbaserade interventioner i späd- och småbarnsfamiljer
5. Anknytningsmätning under barndomen
6. Desorganiserad/desorienterad anknytning
7. Psykopatologi i barn- och ungdomsåren ur ett anknytningsperspektiv
8. Att bedöma anknytningstrygghet hos äldre ungdomar och vuxna
9. Anknytning och psykopatologi hos vuxna
10. Anknytningsteori och psykoterapi
11. Anknytning, religiositet och andlighet
12. Avslutande synpunkter
Extramaterial finns på bokens hemsida www.nok.se/anknytning.
Anknytning i praktiken: Tillämpningar av anknytningsteorin
BROBERG, A., RISHOLM MOTHANDER, P., GRANQVIST, P. & IVARSSON, T.
(2008)
Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).
Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.
Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.
Innehåll
1. Inledning
2. Anknytning ur ett familjeperspektiv
3. Klinisk spädbarnspsykologi
4. Anknytningsbaserade interventioner i späd- och småbarnsfamiljer
5. Anknytningsmätning under barndomen
6. Desorganiserad/desorienterad anknytning
7. Psykopatologi i barn- och ungdomsåren ur ett anknytningsperspektiv
8. Att bedöma anknytningstrygghet hos äldre ungdomar och vuxna
9. Anknytning och psykopatologi hos vuxna
10. Anknytningsteori och psykoterapi
11. Anknytning, religiositet och andlighet
12. Avslutande synpunkter
Extramaterial finns på bokens hemsida www.nok.se/anknytning.
Anknytning i praktiken: tillämpningar av anknytningsteorin.
Broberg, Anders, Risholm-Mothander, Pia, Granqvist, Pehr, Ivarsson, Thord
(2008)
Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den
viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).
Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.
Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.
Anknytningsteori: Betydelsen av nära känslomässiga relationer
BROBERG, A., GRANQVIST, P., IVARSSON, T. & RISHOLM, M., P.
(2006)
I denna första breda kursbok på svenska ges en heltäckande presentation av anknytningsteorin.
Ur innehållet:
Evolution och anknytning
Separation och anknytning
Betydelsen av förälderns lyhördhet i samspelet
Äldre barns och vuxnas nära känslomässiga relationer
Barnets biologiska förutsättningar och hur de påverkar anknytningsrelationen.
Anknytningsteori (del 1) riktar sig till studenter och verksamma inom psykologi och psykiatri, samt barn- och ungdomsrelaterade yrken och utbildningar. Författarna kommer också hösten 2007 ut med Anknytning i praktiken, där de presenterar praktiska och kliniska tillämpningar med anknytningsteoretisk grund.
(Seelig)
Annas oroliga mamma. En berättelse om ångestsyndrom
Jessica Hjert
(2014)
"Annas mamma har en sjukdom som gör att hon alltid är rädd, men Anna förstår inte alls varför. Hon är inte ens rädd för riktiga saker, som ormar, spindlar och sådant. Nej, hon är mest rädd för saker som inte finns eller sådant som inte ens hänt. "I boken får du följa Anna och hennes mamma Eva som har en ångestsjukdom. På ett enkelt sätt får du och ditt barn genom denna berättelse lära er mer om ångestproblematik. Barn och förälder kan tillsammans läsa boken för att diskutera kring rädsla, oro och ångest. Kanske blir boken en naturlig ingång till att presentera sina egna eller en anhörigs problem? Boken kan även användas som högläsning i grupp.Jessica Hjert är beteendevetare med en kandidatexamen i psykologi. Hon har tidigare gett ut "Måste alla vara så jävla lyckliga hela tiden -Svårigheterna föräldrar inte talar om."
Annas pappa får rättspsykiatrisk vård
Alphonce, Elisabet
(2011)
Barn/ungdom
Text och illustrationer: Elisabet Alphonse
Här får vi en beskrivning hur det kan bli när en förälder blir intagen för rättspsykiatrisk vård.
Annorlunda syskon – syskon med funktionshinder
Blomgren, Frida., Wanker, Maria
(2010)
Att växa upp med ett funktionshindrat syskon
Annorlunda syskon handlar om hur det kan vara att växa upp med ett funktionshindrat syskon. Om svårigheter och glädjeämnen och hur det kan prägla de friska barnen.
Boken bygger på intervjuer med nio vuxna syskon där författaren Frida Blomgren har utgått ifrån tio frågeställningar, en för varje kapitel. Det som främst slår en är hur mycket de olika syskonen har gemensamt, både egenskaper och erfarenheter, trots att deras familjer och hemförhållanden har sett olika ut.
Många berättelser handlar om den oro för sjukdom som fanns under barndomen. När syskonen blir äldre finns också tanken på att den dag föräldrarna inte längre orkar eller är kvar i livet, kommer ansvaret att läggas på det friska syskonet. Samtidigt har många nära till glädje och de har lärt sig att inte oroa sig i onödan utan att leva i nuet.
Another Chance Hope and Health for the Alcoholic Family
Wegscheider, S.
(1986)
The second edition of this classic work on recovery for alcohol families updates and expands the original, which won a Marty Mann Award as an outstanding contribution on alcohol communications. The first ten chapters of Another Chance pull the curtain back on the alcoholic family. We meet its cast of characters: the Dependent, the Enabler, the Hero, the Scapegoat, the Lost Child, the Mascot. The author then spells out a treatment plan for halting the downward spital of alcoholism -- a powerful blend of the Twelve Steps pioneered by Alcoholics Anonymous, the Family Reconstruction process developed by Virginia Satir, Wegscheider-Cruse's innovative and eclectic approach to therapy, and her own recovery from co-dependency. The second edition also addresses adult children of alcoholics, sprituality, and co-dependent therapists.
Ansvar för sina föräldrar, jo det har man : Om relationer mellan generationerna : Ålderism.
Strömberg, U.-B.
(2001)
Ansvar, kärlek och försörjning. Om anställda anhörigvårdare i Sverige.
Mossberg Sand, A-B.
(2000)
Avhandling
In Sweden the municipalities have the responsibility to provide the elderly, ill and disabled with the assistance they need to make home living possible. Still, most caring takes place in the family and is performed by relatives. Sometimes a relative carer can be employed and paid by the municipality to perform the help. The aim of this study is to explore the situation of employed family carers. Another purpose has been to investigate how responsibility and work are distributed between society and kin care providers. The results are based upon a project containing four partial studies; a survey investigation based on a random sample with replies from 1197 relative care providers in Sweden representing one fifth of all employed carers at the time. This was followed by an interview study comprising 40 relative care providers and care recipients. The other two partial studies were targeted at social and elderly care management and home-help service assistants respectively. The carers are made up ofthree main groups ;children, spouses and parents. There is also a smaller group with siblings, daughters-in-law, other relatives and friends. The main part ofthe kin care providers consists ofwomen, but 15 percent are men. The clas s status is principally that ofworkers and lower civil servants, although all social classes are represented. Apparently, it is not easy to combine care for relatives with a full effort in the regular labour market. Despite the fact that most women were working part-time, it was sometimes problematic to combine shorter hours with the caring. Thanks to the salary, the majority of the kin care providers have not suffered any economic losses. Apart from the bread-winning aspect, the salary has another important significance - even though the monetary sUll at times is extremely small, it is regarded as recognition of the work. One conclusion, which can be drawn from this investigation, is that the employment and salary are a very appreciated form of support. The salary is a replacement for a work effort, and it has also provided the possibility to quit or reduce other work in order to perform the care. The majority of the kin care providers are content, although many ofthem want better employment terms and higher wages - or rather conditions which correspond to other care work, and a salary which corresponds to the effort. As far as the division between the society and the kin care providers is concerned, it can be said that a lot of the re.sponsibility and work lies with the relatives. Some relatives do not want too much societal intervention, but settle with monetary replacement. Others have apparent needs of assistance, and a working situation which is inhumane. In some cases, it even amounts to a societal abuse of people's responsibility for their relatives.
Att möta det oväntade. Tidigt föräldraskap till barn med Downs syndrom
Riddersporre, Bim
(2003)
Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.
Att möta familjer inom vård och omsorg.
Benzein, E., Hagberg, M., & Saveman, B.-I. (Eds.).
(2012)
En individ befinner sig alltid i ett sammanhang. Därför är det av stor betydelse att fokusera välbefinnande och hälsa utifrån ett familjeperspektiv. Familjen spelar en allt större roll inom vård och omsorg och har fått allt större betydelse även för vård- och omsorgspersonal. Att hjälpa familjen att se styrkor och resurser för att hantera situationer av ohälsa och sjukdom är därför en viktig del i omvårdnadsarbetet.
Att möta familjer inom vård och omsorg beskriver teoretiska grunder för familjefokuserad omvårdnad och ger konkreta exempel från olika kontexter. Här presenteras också hur ett familjefokuserat synsätt kan implementeras i vård, omsorg och forskning som ett komplement till rådande perspektiv i vården, såsom till exempel personcentrerad vård, patientcentrerad vård och anhörigvård. Boken vänder sig till studenter inom vård och omsorg på grund- och avancerad nivå, samt till yrkesverksamma, anhörigvårdare, eller andra med intresse för familjers situation när en familjemedlem drabbas av ohälsa eller sjukdom.
Att möta flyktingar
Angel, B., & Hjern , A.
(2004)
Boken ger grundläggande kunskaper om flyktingars livsvillkor i ursprungslandet och i exilen. Den tar upp upplevda traumatiska händelser som politisk förföljelse, förtryck, fängelse, krig och allvarliga förluster.
Mötet mellan flyktingen och Sverige och den psykologiska process som därvid uppstår – flyktingkrisen – analyseras också.
En avsevärd del av boken ägnas insatser och åtgärder för nyanlända flyktingar.
Att möta flyktingar vänder sig i första hand till studenter och personal inom vården och socialtjänsten. Även andra som möter flyktingar inom t.ex. skolor, frivilligorganisationer eller på förläggningar kan ha nytta av den.
Att möta och bemöta anhöriga i äldreomsorgen
Normann, M., & Fröling, K
(2008)
Nära och kära - att möta och bemöta anhöriga i äldreomsorgen ger dig som arbetar i äldreomsorgen vägledning i vad som är viktigt att tänka på i mötet med de anhöriga. Bokens första del handlar om människans villkor och förutsättningar för kommunikation och är giltiga för de flesta arbetsplatser inom vård och omsorg. I bokens andra del anpassas kunskaperna på mötet med anhöriga och anhörigvårdare till äldre, sjuka och funktionshindrade. I boken finns också förslag till reflektioner, egna och i grupp, samt tips för vidare läsning.
Den senaste upplagan, utgiven oktober 2010, är utökad med ett kapitel som beskriver en äldres situation ur fem olika perspektiv: den anhöriga, sjukgymnasten, kontaktpersonen, chefen på äldreboendet samt biståndshandläggaren. Alla skapar sin bild utifrån sina förutsättningar och kapitlet ger en insikt i den komplexitet som finns inom äldreomsorgen.
Nära och kära är skriven för personal inom äldreomsorgen. Men den får gärna inspirera alla som i sitt yrke möter anhöriga! Författare är Margareta Normann och Kristina Fröling .
Att mötas i samtal. Samtalet som redskap i kommunikationen mellan hemmet och skolan
Rönnqvist, L.
(2008)
Att planera för boendestöd. Om planer, trepartssamtal och klientmedverkan i socialpsykiatrin
Ingemarsson, Maria, Bergmark, Åke & Lundström, Tommy
(2006)
Att pussla ihop ett liv : om samverkan
Swärd A-K., Franke M-L.
(2007)
Den enda existerande bokenom samverkan från ett föräldraperspektiv! Den teoretiska delen om autism är mycket lättförståelig och problematiseringen utgår från FN:s regler om funtionshider som ett problem i relation till omgivningen. Texten föreslår ett förhållningssätt som bygger på samarbete kring barnets starka sidor. Boken granska också kritiskt kommunernas förmåga att organisera hjälp och stöd för de drabbade familjerna enligt LSS-lagstiftningen
Att samtala med föräldrar om syskonens situation
Tallborn Dellve, Andreas
(2009)
Att släppa taget om den andre och att greppa tag om sig själv
Wiberg, Maria
(2006)
Upplands Väsby kommun tillhör en av de få kommuner i landet som bedriver ett strukturerat
anhörigprogram. Trots att det funnits någon form av anhörigarbete i ca 15 år, de senaste 5 åren
med tydligare struktur, har verksamheten hittills inte dokumenterats.
Syftet med denna rapport är att ge en utförlig beskrivning av anhörigprogrammets innehåll,
struktur och förutsättningar. Rapporten vill också skapa en förståelse för den anhöriges
livssituation och behov av egen hjälp. "Vad familjen behöver är undervisning om drogen alkohol,
vilka problem det kroniska missbruket ger upphov till samt sjukdomen alkoholism. Familjen
behöver dessutom lära sig hur sjukdomssymtomen påverkar familjen. Familjen behöver även
hjälp med att kartlägga det egna beteendet för att förstå hur det kan överensstämma med, eller till
och med befrämja alkoholistens drickande. De måste också komma till insikt om sina egna
känslor för att realistiskt kunna förstå problemets dimensioner och vad som krävs av dem. Till
följd av detta måste de undersöka vilka alternativ de har att välja mellan för att lösa problemet.
Framför allt behöver familjemedlemmarna stöd och uppmuntran för att kunna leva sina egna liv
trots alkoholismen. Genom att göra det ökar, paradoxalt nog, chanserna att avbryta den
alkoholistiska processen" (Kinney o Leaton 1997).
Ytterligare ett syfte med rapporten är att mäta om programmet ökar den anhöriges psykiska
välbefinnande, och om programmet påverkar den anhörige beteendemönster och känslor i
relation till den beroende.
Metoden jag använt för att hitta svaren på den första frågan har varit att sammanställa det
material som finns runt de olika temana.
För att få svar på de två andra frågeställningarna har jag använt en självskattningsenkät. Dvs.
deltagarna har själva uppskattat sitt mående utifrån en enkät med 4 svarsalternativ. Mätningen har
skett vid tre tillfällen, före programmet, vid programmets slut och en månad efter programmets
slut. Antal deltagare i utvärderingen är 15 personer, uppdelat på tre olika anhörigprogram.
En svaghet med denna metod är att utvärderingen sträcker sig under en relativt kort tid. Från
första till sista mättillfället är det ca 12 veckor. Förändringsprocesser tar lång tid och för att få en
mer rättvis bild av programmets påverkan skulle en mätning efter ytterligare ett år behövas.
En ytterligare svaghet är att deltagarantalet i utvärderingen är litet. Det går därför inte att dra
några stora slutsatser av resultatet, utan snarare tendenser. Det är dock en god ansats till ett
fortsatt arbete med utvärdering av programmet. Självskattningsenkät har visat sig vara ett
fungerande kvalitetsmätningsinstrument.
Dispositionen på rapporten är följande: Del 1 innehåller den beskrivande delen av
anhörigprogrammet med en historisk tillbakablick. Del 2 är den utvärderande delen av rapporten,
där undersökningsmetoden och sammanställningen av enkätundersökningarna redovisas.
Resultaten visar att det psykiska välbefinnandet tydligt ökar för alla tre grupper över tid. Takten
för ökningen ser olika ut och det kan härledas till deltagarnas olika livssituationer under
programmet. Där deltagarna fortfarande lever med partner i ett aktivt missbruk är den anhöriges
förändring långsammare. Resultatet visar också att deltagarna upplever en förändring i huruvida
de påverkats av sin anhöriges missbruk i såväl känslor som beteendemönster. Denna förändring
är mindre samstämmig och visar ganska stora variationer i de olika grupperna.
Att synliggöra de osynliga barnen – om barn till psykiskt sjuka föräldrar
Skerfving, Annemi
(2005)
Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.
Att synliggöra de osynliga barnen – om barn till psykiskt sjuka föräldrar
Skerfving, A.
(2005)
Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.
Att synliggöra det osynliga : utvärdering av en ny handläggningsmodell och nya former för anhörigstöd
Socialstyrelsen
(2002)
Att tala samma språk. Gemensam struktur vid bedömning av vårdbidrag
Enström Öst C, Agdalen T, Aydin E, Josephson M, Mirjam W.
(2013)
Syftet med studien är att pröva om struktur och språk enligt Klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY, kan användas vid handläggning av vårdbidragsärenden för att göra utredningar och beslut tydligare och mer enhetliga och därigenom förbättra rättssäkerheten. I tillämpningen av reglerna om vårdbidrag ska Försäkringskassan göra en individuell bedömning i varje enskilt ärende. Det finns också krav på likformighet och transparens i handläggningen. ICF-CY är utvecklat av Världshälsoorganisationen (WHO) och erbjuder ett universellt gemensamt språk för att underlätta dokumentation och kartläggning av barnets funktionsförmåga och hälsa i sin miljö.
Vårdbidraget är ett statligt stöd till föräldrar med barn som har en funktionsnedsättning. Syftet med vårdbidraget är att föräldrarna ska ha möjlighet att ge den tillsyn, vård och stöd som krävs för att barnet ska kunna utvecklas på bästa sätt.
Registeranalysen i rapporten visar på skillnader i vårdbidragets omfattning utifrån bland annat region, kön och mottagarens socioekonomiska tillhörighet. Tyvärr kan man inte säga om dessa skillnader är sakliga eller osakliga, det vill säga om de skillnader som observeras kan förklaras av barnens bedömda tillsyns- och vårdbehov.
Det finns inga uppgifter i register om grunderna för ett beviljat vårdbidrag, det vill säga vilken funktionsförmåga eller vilket tillsyns- och vårdbehov barnet har. I den här studien har information i 264 ärenden gällande förstagångsansökningar om vårdbidrag översatts till struktur och språk i ICF-CY. Rapporten redovisar det som finns skrivet om hur barnet fungerar i sin miljö när innehållet har översatts och tolkats.
När innehållet i utredningarna översätts, handlar merparten av utredningarna, både Försäkringskassans sammanfattningar och motiven för beslut som skickas till den sökande, om sådant som barnen kan göra och faktiskt gör, eller har svårigheter att utföra. Merparten av utredningarna berör aspekter på hur barnet genomför enstaka eller flera uppgifter och hur de hanterar krav medan endast ett fåtal utredningar handlar om hur barnet genomför dagliga sysslor och uppgifter som att ta hand om personliga föremål och att hjälpa andra.
Resultaten tyder på att en tillämpning av struktur och språk enligt ICF-CY i handläggningen av vårdbidrag skulle öka likformigheten, samtidigt som man skulle undvika att samla in irrelevant information och därigenom kunna spara tid i handläggningen. Om man klassificerar funktionsnedsättning på detta sätt, blir det också möjligt att dokumentera funktionsnedsättning i register på samma sätt som diagnos registreras idag, vilket underlättar utvärdering.
Att utgå från människan i livet istället för människan i vården. En utvärdering av patient- och närståendeutbildningar enligt Akermodellen och samtalscirklar genomförda i projektet ”Det goda livet
Johansson, Anna-Carin
(2008)
Att utveckla anhörigstöd
Genell Andrén K, Johansson L.
(2008)
Anhöriga gör stora insatser i vården och omsorgen av sina närstående. Men som anhörig kan man också behöva stöd och avlastning.
Att utveckla anhörigstöd
Matheny G.
(2013)
Att utveckla anhörigstöd
Vilka är de personer som stöttar och vårdar en närstående, vilket stöd efterfrågar de och vad kan samhället och den enskilda arbetsplatsen erbjuda? Vilken värdegrund styr bilden av de anhöriga – ses de som en värdefull resurs eller är de en belastning i arbetet kring den närstående?
Ett sätt att uppfylla målen med gällande lagstiftning är att arbetsplatserna ska formulera rutiner för hur de ska stötta och samarbeta med anhöriga i det dagliga arbetet. Boken ger praktiska verktyg för hur man steg för steg, med de anhöriga själva som sakkunniga, kan utveckla arbetsplatsens anhörigstöd. Författaren beskriver den anhörigvänliga arbetsplatsen och ger ett konkret förslag till hur rutiner för anhörigstöd och anhörigsamverkan kan tas fram. Innehållet presenteras på ett lättillgängligt sätt och läsaren får många fallbeskrivningar och förslag till diskussionsämnen att utgå ifrån.
Att utveckla anhörigstöd vänder sig till arbetsgrupper/verksamheter inom vård och omsorg samt socialtjänst som vill utveckla arbetsplatsens anhörigstöd. Utvecklingsarbetet föreslås ske genom att arbetsgruppen möts vid ett antal reflektionsträffar kring bokens innehåll. Boken vänder sig både till baspersonal och ledare, och den kan dessutom utgöra ett handfast verktyg för anhörigombud och anhörigkonsulenter som utbildar och handleder arbetsgrupper inom området anhörigstöd.
Att utveckla en modell av anhörigstöd med Basal Kroppskännedom och Samtal i grupp
Ekenberg, L.
(2010)
Syftet med denna satsning på anhörigstöd var att pröva och utveckla en mo-dell för anhörigstöd med Basal Kroppskännedom (BK) och samtalsstöd i grupp vid Länsenheten Råd och Stöd i Norrbotten. Förberedelsearbetet bestod av en kurs i BK och samtal för en sjukgymnast och en kurator. Dessa två konstruerade en enkät med frågor om den anhöri-ges relation till vårdtagaren, upplevelse av anhörigrollen, upplevelse av stöd-insatser och den anhöriges behov av förändringar. Enkäten konstruerades med idéer från ett frågeformulär använt i Socialstyrelsens "Anhörig 300" projekt. Sjukgymnasten ledde en femdagars utbildning i BK för Länsenhe-tens alla kuratorer. Sex anhöriggrupper med BK och samtal i grupp genomfördes under åren 2005-2009, en i Kalix, en i Piteå och fyra anhöriggrupper i Luleå. Antalet gruppträffar varierade mellan 8-11 träffar. I anhöriggruppen i Kalix deltog fem kvinnor, som var och en levde tillsam-mans med en man med någon form av funktionsnedsättning. I Piteå deltog två män och tre kvinnor. Tre levde i en make/maka relation, två var föräldrar och en anhörig hade ett syskon med funktionsnedsättning. I Luleå genom-fördes fyra anhöriggrupper. Anhörigkonstellationen i grupperna var män och kvinnor med anhörigrelation som make/maka och föräldrar till vuxna barn med funktionsnedsättningar. Enkätutvärdering skedde i fem anhöriggrupper som besvarades vid tre tillfäl-len: 1) vid start av anhöriggrupp 2) vid kursavslut och 3) vid uppföljning cirka 6 månader efter kursavslut. Deltagarna gavs utrymme till att direkt ef-ter BK-övningarna göra anteckningar om sina upplevelser direkt efter BK-övningarnas genomförande före gruppsamtalen. I en anhöriggrupp i Luleå var deltagandet så lågt att grupprocessen uteblev. I Kalix- Piteå- och två Lu-leågrupper medverkade deltagarna i en individuell processutvärdering om kroppsupplevelser. Resultaten av den individuella processutvärderingen visade att deltagarna upplevde BK-övningarna, som en möjlighet till en egen skön stund med av-slappning utan prestation. För många ledde detta till en större lyhördhet för kroppens signaler t.ex. om hur det är i relationen och att lägga märke till sina egna behov. Efter hand utvecklades tilliten i grupperna då deltagarna utifrån sin egen tillitsprocess öppnade sig och "vågade börja berätta". Enkätutvärde-ringen visade på marginella förändringar i skattningen av anhörigsituationen. I skattningarna framkom för makar en svag trend mot en något sämre upple-velse av anhörigsituationen medan föräldrarnas skattningar visade en svag trend mot en något bättre upplevelse av sin anhörigsituation. Kommentarer-na i enkäten bekräftade denna trend. Vår erfarenhet är att BK-övningar och samtal i grupp för anhöriga kräver en noggrann förberedelse och ett fruktbart möte/samarbete mellan kurator, sjukgymnast och gruppdeltagare. I NkAs kunskapsöversikt och i NkAs lärande nätverk framhålls Mö-tet/samtalet som "kanske som det mest underskattade anhörigstödet" (Win-qvist, 2010). Eftersom denna form av stöd saknas i dagens anhörigstöd anser vi att vår modell är ett viktigt bidrag, som borde prövas och utvärderas i stör-re skala.
Att utveckla stödet till anhöriga : en kartläggning av anhörigstöd på Östermalm
Hjalmarson, I., Norman, E.
(2012)
Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.
Att utveckla stödet till anhöriga. En kartläggning av anhörigstöd på Östermalm
Hjalmarsson, Ingrid & Norman, Eva
(2012)
Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.
Caregiving
Zarit, S., Femia, E. E., & Whitlatch, C. J.
(2015)
Encyclopedia of Mental Health, Second Edition, tackles the subject of mental health, arguably one of the biggest issues facing modern society. The book presents a comprehensive overview of the many genetic, neurological, social, and psychological factors that affect mental health, also describing the impact of mental health on the individual and society, and illustrating the factors that aid positive mental health.
The book contains 245 peer-reviewed articles written by more than 250 expert authors and provides essential material on assessment, theories of personality, specific disorders, therapies, forensic issues, ethics, and cross-cultural and sociological aspects. Both professionals and libraries will find this timely work indispensable.
Challenges in evaluating childhood bereavement services
Rolls, L.
(2011)
This paper discusses the evaluation of childhood bereavement services in the UK policy context and some of the challenges this presents. Two key difficulties are discussed: the lack of any clear, agreed outcomes from bereavement interventions with children, and the challenge of evaluating the complex social processes that bereavement interventions involve. Two recommendations are made to address these in the short term and to generate data for wider research. These are: to strengthen services' existing evaluation strategies, and to develop a routine evaluation package that can be used by all services. This would comprise a basic data set, a user satisfaction questionnaire, and a childhood bereavementfocused clinical outcome routine evaluation measure. In the longer term, further research is recommended, including UK-based longitudinal studies.
Childhood bereavement: distress and long term sequelae can be lessened by early intervention
Black, D.
(1996)
When Alison Hargreaves lost her life climbing K2 in the Himalayas, her widower was strongly criticised for acceding to their 6 year old son's request to see "mummy's last mountain" and even more so when he took along on the trek their 4 year old daughter. But the ensuing expedition clearly enabled the children to process the information about their mother's death and to begin the task of mourning. As the general practitioner who accompanied and counselled the children reported,1 after seeing the mountain, building a memorial cairn at its base, and using a workbook designed to help young children to understand and come to terms with death,2 Kate was able to say, "Mummy had tried her best to come down and see us, but she just couldn't, the storm was so strong."
Childhood bereavement: psychopathology in the 2 years postparental death
Cerel, J., Fristad, M.A., Verducci, J., Weller, R.A., & Weller, E.B.
(2006)
Abstract
OBJECTIVE:
Although the death of a parent is one of the most significant stressors a child can experience, the psychiatric sequelae of parental death are not fully understood.
METHOD:
A total of 360 parent-bereaved children (ages 6-17) and their surviving parents were directly interviewed four times during the first 2 years following the death (at 2, 6, 13, and 25 months). Data collection occurred from 1989 to 1996. Psychiatric symptomatology was compared among the bereaved children, 110 depressed children, and 128 community control children and their informant parents. Additional analyses examined simple bereavement without other stressors versus complex bereavement with other stressors and anticipated versus unanticipated death.
RESULTS:
Bereavement following parental death is associated with increased psychiatric problems in the first 2 years after death. Bereaved children are, however, less impaired than children diagnosed with clinical depression. Higher family socioeconomic status and lower surviving parents' level of depressive symptoms are associated with better outcomes. Complex bereavement was associated with a worse course, but anticipation of the death was not.
CONCLUSIONS:
Childhood bereavement from parental death is a significant stressor. Children who experience depression in combination with parental depression or in the context of other family stressors are at the most risk of depression and overall psychopathology.
Children of alcoholic parents: a review
Steinhausen, H-C.
(1995)
Children of alcoholics are prone to genetic, environmental, and teratogenic risk factors. This review starts by outlining the developmental risks due to intrauterine exposure to alcohol. Furthermore, the overall findings from genetic research are summarized. A further section deals with the analysis of the environment of the family with an alcoholic parent. Within the section on psychopathology the special links to conduct disorders and delinquency, hyperkinetic disorders, substance abuse, anxiety and depression, and somatic problems are described. Special consideration is also given to the literature dealing with cognitive and neuropsychological functioning in the offspring of alcoholic parents. Finally, the limitations of current knowledge are emphasized.
Children with medical complexity: an emerging population for clinical and research initiatives
Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. B., Bhagat, S. K. M., Simon, T. D., & Srivastava, R.
(2011)
Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.
Children´s assessment of participation and enjoyment & Preferences for activities of children
King G, King S, Rosenbaum P, Kertoy M, Law M, Hurley P, et al.
(2004)
The psychometric properties of assessments must be established for specific populations. The psychometric properties of the Children's Assessment of Participation and Enjoyment/Preference for Activities of Children have been studied only in a sample of children with physical disability. We conducted a study to determine the appropriateness of drawing inferences from this assessment for children with high-functioning autism (HFA). The content validity and test–retest reliability (r > .7) were both found to be adequate for this population. Parents' agreement with most of their children's self-ratings on this assessment provided an estimate of interrater reliability. We also ascertained the feasibility of gathering recreational participation information from children with HFA and found that adaptations to facilitate the self-completion of the tool should be made available. The study findings support the use of this tool to assess recreational participation among children with HFA.
Children´s experiences of Hospitalization
Coyne, I.
(2006)
Abstract
This article reports on children's experiences of hospitalization. Data were collected via semi-structured interviews with 11 children aged between seven and 14 years from four paediatric units in England. The children identified a range of fears and concerns, which included: separation from parents and family; unfamiliar environment; investigations and treatments; and loss of self-determination. The children's loss of self-determination over personal needs exacerbated their fears and concerns. It needs to be recognized that compliance with hospital routines is a variable, which influences children's reaction to hospitalization. The findings clearly indicate that children need adequate information tailored to their needs, that their views are sought in the planning and delivery of their care and that hospital environments need to be made more child-centred. Interventions designed to reduce children's stress during hospitalization are not only likely to decrease their stress at the time, but also likely to influence how future experiences are appraised and managed.
Children’s representatives in psychiatric services: What is the outcome?
Östman, M., & Afzelius, M.
(2011)
Background: Psychiatric services have established children's representatives in an effort to support children of mentally ill patients.
Material: Twenty two specially designated children's representatives and 19 other staff members were asked how they conceived the role of children's representatives and if those representatives had the responsibility of identifying children of mentally ill patients.
Discussion: Children's representatives expressed difficulty in functioning as advocates for children whose parents were being treated for mental illness. Members of the psychiatric staff, although aware their patients had children, seldom met them since they focused on the adults.
Conclusions: More than one third of all patients seeking psychiatric care have children, yet children's representatives and other staff members seldom meet them.
Combining informal care and work: supporting carers in the workplace
Arksey H.
(2002)
The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.
Community participation patterns among preschool-aged children who have received Part C early intervention services
Khetani M, Graham JE, Alvord C.
(2013)
Background
We examined activity-specific patterns and child, family and environmental correlates of participation restriction in nine community-based activities among preschoolers with disabilities who have received Part C early intervention services.
Methods
Data were gathered from a subsample of 1509 caregivers whose children (mean age = 67.7 months) had enrolled in the National Early Intervention Longitudinal Study (NEILS) and completed a 40-min computerized telephone interview or 12-page mailed survey. Data were analysed on cases with complete data on the variables of interest. Bivariate relationships were examined between variables, including patterns of co-reporting participation difficulties for pairs of community activities.
Results
Caregivers were more than twice as likely to report difficulty in one activity (20%) than difficulties in 2–3, 4–5, or 6–9 activities. Co-reporting paired difficulties was strong for activities pertaining to neighbourhood outings but less conclusive for community-sponsored activities and recreation and leisure activities. Our data show strong and positive associations between child functional limitations in mobility, toileting, feeding, speech, safety awareness, and friendships and participation difficulty in 7–9 activities. Lower household income was associated with participation difficulty in 7 out of 9 activities and difficulty managing problematic behaviour was strongly associated with participation difficulty in all 9 activities. Each of the three environmental variables (limited access to social support, transportation and respite) was associated with participation restrictions in all nine activities.
Conclusion
Results provide practitioners with detailed descriptive knowledge about modifiable factors related to the child, family and environment for promoting young children's community participation, as well information to support development of a comprehensive assessment tool for research and intervention planning to promote community participation for children enrolled in early intervention.
Coping, stress resistance, and growth: Conceptualizing adaptive functioning
Holahan, CJ., Moos, RH., & Schaefer. JA.
(1996)
ABSTRACT analyze the coping process, emphasizing the relevance of coping research to understanding adaptive functioning more generally / begin by considering general conceptualizations of coping, and present an integrative conceptual approach / describe the relation between different coping strategies and adaptive functioning / present 2 models of adaptive functioning—reflecting both stress resistance and crisis growth—that depend on coping as a central mechanism / highlight key issues that refine our general understanding of coping and adaptation.
Decreasing the risk of complicated bereavement and future psychiatric disorders in children
Kirwin, K.M. & Hamrin, V.
(2005)
Abstract
TOPIC:
Decreasing the risk of complicated bereavement and future psychiatric disorders in children.
PURPOSE:
This literature will determine what major factors influence a child's response to death and to understand how children react to the death of a parent at different developmental stages. It will evaluate the following: a) What are children's emotional responses to the death of a parent? b) How can a surviving parent help the grieving child complete the tasks of grieving? c) What skills are important for a parent to learn in order to help the grieving child through the tasks of grieving and d) How can mental health providers help the grieving family and the grieving child?
SOURCES:
Relevant literature from child psychiatry, child psychology, and nursing.
CONCLUSIONS:
The death of a parent is a major stressful event for children and their families. This traumatic event can bring serious psychological and social distress to bereaved children and their families. Children who are not supported in the early phases of grieving can develop serious emotional and behavioral problems that can lead to the development of some major psychiatric disorders. Providing early prevention support programs for surviving parents and bereaved children can help both the parents and the children adapt to their losses. These structured programs can decrease the risk of complicated grief in bereaved families. More research studies are needed to validate the effectiveness of these early prevention program interventions.
Det moderna föräldraskapet – en studie av familj och kön i förändring
Bäck-Wiklund, Margareta & Bergsten, Birgitta
(1997)
Den moderna förälderns lott är att ständigt reflektera över sig själv - som förälder, som partner, som könsvarelse osv. Värderingarna hemma och på jobbet är olika, kraven från båda håll är alltid stora och kvinna och man förväntas leva jämlikt. Föräldrar i dag känner sig splittrade och otillräckliga. I denna mångtydiga situation måste vardagen fungera. Det är då de traditionella rollerna kommer till användning igen, men på nya villkor.
De flesta i vårt land säger sig stå bakom ett jämställdhetsideal, men hur lever vi egentligen i praktiken? Den här boken lyfter fram familjen som en plats där jämlikheten sätts på undantag. Boken består av två delar. Den första handlar om den svenska välfärdsstaten i ett familjeperspektiv och kulturella föreställningar kring kvinnligt och manligt. Teorier om familj, kön och föräldraskap i det moderna samhället presenteras och problem inom den empiriska forskningen diskuteras.
I del två analyseras hur vardagen ter sig för ett trettiotal unga barnfamiljer som författarna följt under mer än två år. Resultatet visar hur svenska föräldrar ser på bland annat barnuppfostran, hem- och lönearbete, kvinnligt respektive manligt. Samtliga föräldrar sätter upp barnens bästa som det viktigaste målet i sina liv, men mödrarna väljer andra sätt att förverkliga det än fäderna. I ett särskilt avsnitt analyseras moderskapet. Där framträder det dåliga samvetet som ett tidens tecken och att säkerhet i modersrollen nästan alltid förutsätter en trygg förankring på arbetsmarknaden.
Det tårdränkta barnet : min berättelse om att bli pappa till ett barn med utvecklingsstörning
Karlsudd Peter
(2015)
VARFÖR DENNA BOK?Den här boken påbörjades för tjugofyra år sedan. Då kom vår tredje dotter Lisa till världen och hela vår familjesituation förändrades i grunden. Lisa föddes med funktionsnedsättningen Downs syndrom, eller mongolism, som många felaktigt kallar det. Under Lisas första månader skrev jag ner mina tankar och reaktioner i form av anteckningar och dikter. Mycket text kring förtvivlan, sorg, skam, ilska, hopp, kärlek och det som jag, och säkert andra mycket tidigare än jag själv, uppfattade som självömkan.Efter några månader övergav jag mitt skrivande, troligen för att jag inte hade samma uttrycksbehov. Men säkert också för att mitt samvete inte ville konfronteras med mina formuleringar. Behovet av att skriva dikter avtog. När jag sjutton år senare hittade en gammal utskrift av mina anteckningar föddes idén om att fullfölja berättelsen fram till dags dato. En fortsättning på en historia som varit arbetsam, men som stärkt vår familj och gett oss särskilda erfarenheter och livskvaliteter. En viktig anledning till att nu avsluta berättelsen var att söka en förklaring till varför jag reagerade som jag gjorde när Lisa föddes. Var mina reaktioner ovanliga? Kunde andra uppleva situationen på liknande sätt? Samtidigt sporrades jag av en slags nyttoinriktad ambition att få andra att förstå min upplevelse: I ett av mina lyckligaste ögonblick ställs jag inför faktumet, att vårt nyfödda barn har en funktionsnedsättning. Så den här boken blir främst en personlig vittnesbörd. Men den som tagit del av den vill säkert gå vidare, vidga sin kunskap och få veta mera. Boken avslutas därför med en referenslista över vetenskaplig litteratur och information kring mitt ämne. Jag hoppas att detta kan inspirera till vidare läsning och diskussion. Vid varje kapitelslut finns korta sammanställningar av fakta eller refererat av det viktigaste jag läst. Forskning vill ju annars alltid bli för lång, det är därför den blir vad den ska vara, i bästa fall: Ögonöppnande, och utan slut. För den som vill koppla bokens innehåll till utbildning finns ett textmaterial: "Det tårdränkta barnet. Forskningsgenomgång, diskussionsfrågor och förslag till arbets- och fördjupningsuppgifter", som lätt kan laddas hem på webbadressen karlsudd.se. Här kan du även se Lisas bilder i färg.Min berättelse här bygger alltså på mina personliga erfarenheter. Jag vill betona det, allt jag skriver får givetvis stå för mig. Jag har försökt anstränga mig för att göra rättvisa åt övriga familjemedlemmars minnesbilder. Under fem somrar har jag försökt slutföra texten, men inte lyckats. Eftersom Lisas utveckling gått bakåt de senaste åren har det varit svårt att skriva om den tid som varit. Om du läser den här texten omgiven av ett bokomslag, har jag trots detta lyckats i mina föresatser.Boken tillägnar jag Lisa - vår underbara dotter och syster som har gett oss så mycket glädje, kärlek och insikter i livet. Som vi alltid säger till henne vid läggdags: VI ÄR STOLTA ÖVER DIG, VI ÄR RÄDDA OM DIG OCH VI ÄLSKAR DIG.Pappa Peter, med uppmuntran från mamma Marie och storasystrarna Anna-Mi och Hanna.Karlsnäs, 2014
Determinants of subjective and objective burden of informal caregiving of patients with psychotic disorders
Flyckt L, Fatouros-Bergman H, Koernig T.
(2015)
BACKGROUND: In a previous study, the objective burden of informal caregiving to
patients with psychotic disorders amounted to 22 hours/week, and the subjective
burden was huge with predominately anxiety and depression as main symptoms. In
this study, determinants of the informal caregiving burden are analyzed to find
foci for interventions to ease the size of burden.
METHODS: Patients with psychotic disorders (n = 107) and their informal
caregivers (n = 118) were included. They were assessed with a comprehensive
battery of rating scales including patient and caregiver characteristics as well
as the amount and quality of health-care provision.
RESULTS: A multiple linear regression analysis showed that the subjective burden
was significantly lower when patients had higher levels of functioning and when
the health status of the informal caregivers was good. No significant
determinants were found for the objective burden, but an association was found
between a higher socioeconomic status of the caregivers and the amount of money
provided for the patient. An association was also found between a positive
perception of caregiving and more hours spent on caregiving.
CONCLUSION: The functioning level of the patients was the main determinant of the
subjective burden of informal care. For the objective burden, no main determinant
was found.
Developing new strategies to support future caregivers of the aged in Canada: Projections of need and their policy implications
Keefe J, Légaré J, Carrière Y.
(2007)
Projections of future need for Canadian continuing care services typically uses current utilization patterns and population aging. Accurately assessing this need is much more complex since disability patterns among the elderly are changing and availability of caregivers is affected by changes in family structure. This paper projects annual growth rates between 2001-2031 in the need for informal and formal support among elderly Canadians and discusses the policy implications of the increasing demand for informal caregivers. Using Statistics Canada's LifePaths micro-simulation model, these projections incorporate disability rates and the potential availability of informal caregivers. The authors conclude that continued focus on family to meet the needs of elderly Canadians without increased support is not sustainable in the long term. New strategies to support Canadian caregivers are proposed and their economic feasibility in the public and private markets are evaluated (abstract from p. 4 of report).
Differentiation among types of intimate partner violence: research update and implications for interventions
Kelly, Joan B, & Johnson, M P.
(2008)
A growing body of empirical research has demonstrated that intimate partner violence is not a unitary phenomenon and that types of domestic violence can be differentiated with respect to partner dynamics, context, and consequences. Four patterns of violence are described: Coercive Controlling Violence, Violent Resistance, Situational Couple Violence, and Separation-Instigated Violence. The controversial matter of gender symmetry and asymmetry in intimate partner violence is discussed in terms of sampling differences and methodological limitations. Implications of differentiation among types of domestic violence include the need for improved screening measures and procedures in civil, family, and criminal court and the possibility of better decision making, appropriate sanctions, and more effective treatment programs tailored to the characteristics of different types of partner violence. In family court, reliable differentiation should provide the basis for determining what safeguards are necessary and what types of parenting plans are appropriate to ensure healthy outcomes for children and parent–child relationships.
Do Young Carers Deserve Justice? Young Caring in the Context of Illness
Sahoo, R., & Suar, D.
(2009)
Though there is a lot of discussion on carers' issue, young caring is still ignored and many facts remain unknown to us, which need to be revealed. Children or young people who provide continuous care for ill or disabled parents, siblings or any other family members are young carers. This raises several issues related to justice in the context of the young. Caring has its rewards and difficulties. This paper reviews the literature on informal caregiving for ill family members in order to explore caring concept in children's mind and how young caring varies with age, sex, types of illness and different family situations from the perspective of children and parents. Causes and consequences of young caring have been explored. Agenda for future research is suggested.
Does grief counseling work?
Jordan, J.R. & Neimeyer, R.A.
(2003)
Most bereavement caregivers accept as a truism that their interventions are helpful. However, an examination of the bereavement intervention literature suggests that the scientific basis for accepting the efficacy of grief counseling may be quite weak. This article summarizes the findings of four recent qualitative and quantitative reviews of the bereavement intervention literature. It then discusses three possible explanations for these surprising findings and concludes with recommendations for both researchers and clinicians in thanatology that could help to focus efforts to answer the questions of when and for whom grief counseling is helpful.
Early understanding and production of graphic symbols
Callaghan, T. C.
(1999)
Young children's ability to understand and produce graphic symbols within an environment of social communication was investigated in two experiments. Children aged 2, 3, and 4 years produced graphic symbols of simple objects on their own, used them in a social communicative game, and responded to experimenter's symbols. In Experiment 1 (N = 48), 2-year-olds did not effectively produce symbols or use the experimenter's symbols in the choice task, whereas 3- and 4-year-olds improved their drawings following the game and performed above chance with the experimenter's symbols. Ability to produce an effective graphic symbol was correlated with success on a task that measured understanding of the experimenter's symbols, supporting the claim that children's ability to produce a graphic symbol rests on the understanding of the symbolic function of pictures. In Experiment 2, 32 children aged 3 and 4 years improved their third set of drawings when they received feedback that their drawings were not effective communications. The results suggest that production and understanding of graphic symbols can be facilitated by the same social factors that improve verbal symbolic abilities, thereby raising the question of domain specificity in symbolic development.
Early Violence Exposure and Self-Regulatory Development: A Bioecological Systems Perspective
McCoy, D. C.
(2013)
Each year, thousands of American children are exposed to violence in their homes and communities. Although research in multiple fields has shown this violence to have severe and negative consequences for children's self-regulation, this work lacks a unified theoretical orientation that sufficiently captures the complexity of these relationships. Using a bioecological systems framework, the present article presents a multidimensional model of the relationship between children's exposure to violence and their self-regulatory development. Specifically, this model considers: (a) different dimensions of exposure (including chronicity, pervasiveness, and proximity); (b) child- and family-level mediating mechanisms (including biological stress-response systems and parenting); (c) the transactional, multidirectional nature of these relationships; and (d) the ways in which individual and environmental factors may contribute to multifinality. Finally, the present article also proposes a number of methodological and conceptual suggestions for strengthening future research in the area of violence, self-regulation, and psychosocial risk.
Identifying adult children of alcoholics: methodological review and a comparison of the CAST-6 with other methods
Hodgins, DC., & Shimp, L.
(1995)
Methods of identifying adult children of alcoholics are described and their psychometric properties are reviewed. These methods include self-report single questions and questionnaires and interview schedules. The CAST-6, a shortened version of the Children of Alcoholics Screening Test, is compared with a variety of these methods. The CAST-6 is confirmed as a useful brief screening measure. It was shown to be internally reliable, have good retest reliability and to agree well with other measures. Using a face to face interview as the comparison standard, however, a number of single questions performed equally as well as the CAST-6 and other more complex methods.
Identifying and responding to the mental health service needs of children who have experienced violence: a community-based approach
Drotar, D., Flannery, D. J., Day, E, Friedman, S., Creeden, R., Gartland, H., . . . McTaggart, M.J.
(2003)
Children's exposure to violence, their psychological response to the violence, and their participation in a community-based intervention service were described. This article describes the provision of mental health services and the process evaluation for the initial phase of the program (1999-2000). A large number (N = 1739) children were referred to the program over a 17.5-month period for mental health intervention immediately after witnessing and experiencing a range of violent acts, the majority of which (N = 1355) involved domestic violence. A majority of referred children and adolescents (N = 946) directly witnessed such violence, and the majority of those who were old enough to provide self-report indicated that they perceived the event as a direct threat to their safety. Many of these children and adolescents also reported high levels of trauma symptoms. The majority of children (N = 1117) who were referred to the program participated. The findings underscore the feasibility of developing mental health services to meet the needs of children who are exposed to violence, especially family violence, at a critical time following violence exposure.
Implementing child-focused family nursing into routine in adult psychiatric practice: Hindering factors evaluated by nurses
Korhonen T, Vehviläinen-Julkunen K, Pietilä A-M.
(2008)
Keywords:
child;family nursing;family nursing interventions;psychiatric nursing
Aims and objectives. The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.
Background. There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.
Design and methods. Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.
Results. Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.
Conclusion. To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.
Relevance to clinical practice. The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.
Improving family functioning and child outcome in methadone maintained families: the Parents Under Pressure programme.
Dawe S, Harnett PH, Rendalls V, Staiger P.
(2003)
Twelve families responded to posters displayed in a methadone clinic for inclusion in a pilot study assessing the viability and potential utility of an intensive, multi-component family-focused intervention, the Parents Under Pressure programme. The programme was designed to improve child behaviour, decrease parental stress and improve family functioning in methadone-maintained families by targeting affect regulation, mood, views of self as a parent, drug use and parenting skills. Nine of the families completed the programme delivered in their homes; eight were recontacted at 3 months. Each family reported significant improvements in three domains: parental functioning, parent-child relationship and parental substance use and risk behaviour. In addition to the changes in family functioning, the majority of families reported a decrease in concurrent alcohol use, HIV risk-taking behaviour and maintenance dose of methadone. The families reported high levels of satisfaction with the programme. It is recommended that future studies include independent measures (e.g. behavioural observations) of child outcome and parental functioning. The results were optimistic and provided the impetus to evaluate the treatment programme using a randomized controlled trial.
Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife
Dentinger E, Clarkberg M.
(2002)
Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.
Informal home caregiving in a gender perspective: A selected literature review
Lundqvist, F.
(2006)
Informella hjälpgivare
Szebehely M.
(2006)
Innvandring og innvandrere 2002. Statistiske analyser nr 50
Lie, B.
(2002)
Insatser för barn och unga
Socialstyrelsen
(1998)
Inte bara Anna : asperger och stress
von Zeipel Elisabet, Alm Kerstin
(2015)
Många hade försökt förstå sig på Anna. Men hon hann bli femton år innan någon förstod att hon hade Aspergers syndrom. Att leva med asperger kan vara påfrestande och man stöter på fler hinder i vardagen än andra. Det kan leda till stress och så småningom utbrändhet. Och Anna är långtifrån ensam om sina upplevelser. När Anna var sjutton år kom hon till sist inte iväg till skolan. Här börjar författaren Elisabet von Zeipel och Anna en spännande "resa" som vi får följa med på.
Det här är en fackbok i berättelsens form. Anna har farit illa men trots det är det en hoppfull bok. Utbrändhet kan förebyggas när vi sänker stressen för personer med asperger.
Intentional communication acts expressed by children with severe disabilities in high-rate contexts
Bruce, S. M., & Vargas, C.
(2007)
The purpose of this study was to identify the rates of communication expressed by 17 children with severe disabilities in high-rate school contexts while piloting a new coding system for intentional communication acts (ICAs). The following nine characteristics were used when coding ICAs expressed in both child initiated and adult initiated communicative interactions: joint attention, form of communication, use of pause, persistence, repetition, repair, expression of pleasure or displeasure when understood or misunderstood, expression of pleasure or displeasure to communication partner's message, and evidence of comprehension. Children communicated 1.7 - 8.0 ICAs per minute in the highest rate contexts. Nine of the 34 high-rate contexts were speech clinical sessions, six were activities that included eating, 30 were familiar activities, and four were novel activities.
Interaction between adult patients’ family members and nursing staff on a hospital ward
Åstedt-Kurki, Päivi, Paavilainen, Eija, Tammentie, Tarja, Paunonen-Ilmonen, Marita
(2001)
The purpose of this study was to generate knowledge of the interaction between an adult patient's family members and nursing staff from the staff's perspective.
Data were collected from nursing staff (n=155) working on the wards and out-patient departments for pulmonary, rheumatic, neurological and gastroenterological diseases at a university hospital by using a new questionnaire based on earlier research and the literature. The questions explored the staff's views of interaction with the adult patient's family members. In this study, interaction is seen as an umbrella concept which encompasses giving information to relatives, discussion, contacts between staff and significant others and working together. The instrument included questions about personal and telephone discussions, the provision of written instructions and factors facilitating and complicating interaction. The response rate was 55%. The data were analysed using SPSS software and examined using frequency and percentage distributions and cross-tabulation. The open-ended questions were analysed using qualitative content analysis by reducing, grouping and abstracting the data inductively.
Discussions with relatives while they visited the patient in hospital were the commonest form of interaction. The majority of respondents perceived the interaction with the patient and knowing his or her family members as important. Less than one-fourth of the respondents started discussion with family members, while the majority expected family members to initiate interaction. The majority of respondents perceived the patient's presence in discussion as important, but sometimes they thought it was necessary to discuss with family members without the patient. The staff discussed with family members mainly in the ward office or in patient rooms, which were, however, not perceived as peaceful. Discussions primarily pertained to the patient's condition, discharge from hospital and planning of continued treatment.
Interdisciplinary Studies of Childhood Ethics: Developing a New Field of Inquiry
Carnevale, F. A., Campbell, A., Collin-Vezina, D., & Macdonald, M. E.
(2013)
The principal aim of this investigation was to help develop 'Interdisciplinary Studies of Childhood Ethics' as a new field of inquiry. We identified: (i) current intra-disciplinary and interdisciplinary knowledge gaps in childhood ethics; and (ii) priorities for future research and development. A prominent problem, highlighted within and across disciplines, relates to how the best interests standard should be reconciled with the recognition of children as agents. This project makes an innovative contribution by promoting the development of interdisciplinary childhood ethics knowledge and standards, informing future improvements in childhood research and services.
International migration, immobility and development. Multidisciplinary perspectives
Hammar T, Brochmann G, Tamas K, Faist T.
(1997)
Internet-based parent management training: A randomized controlled study
Enebrink, P., Högström, J., Forster, M., & Ghaderi, A.
(2012)
OBJECTIVE:
The current study evaluated the efficacy of an Internet-based parent-training program for children with conduct problems. Dose-response ratio and costs for the program were also considered.
METHOD:
Parents of 104 children (aged 3-12 years) were randomly allocated to either parent training or a waitlist control condition. Diagnostic assessment was conducted at baseline and parent ratings of child externalizing behaviors and parent strategies were completed before and after treatment and at 6-month follow-up.
RESULTS:
At post-treatment assessment, children whose parent(s) had received the intervention showed a greater reduction in conduct problems compared to the waitlist children. Between group intent-to-treat effect sizes (Cohen's d) on the Eyberg Intensity and Problem scales were .42 and .72, respectively (study completers .66 and 1.08). In addition, parents in the intervention group reported less use of harsh and inconsistent discipline after the treatment, as well as more positive praise. Effects on behavior problems were maintained at 6-month follow-up.
CONCLUSIONS:
The results support the efficacy of parent training, administered through Internet, with outcomes comparable to many of the group-based parent training programs. The efficacy, low cost, and higher accessibility make this intervention a fitting part in a stepped-care model.
Interpersonal interactions and relationships (D710-D799).
Bailey SN, Lach LM, Byford-Richardson K.
(2012)
Measures for children with developmental disabilities: an ICF-CY approach. Annette Majnemer, ed. Mac Keith Press, 2012. 150.00 [pound sterling]. 552pp. ISBN: 978-1-908316-45-5 I highly recommend this book: Professor Majnemer has brought together a wide range of outcome measurement experts creating a thoughtfully crafted book, essential reading for anyone selecting outcome measures for use with children and youth with developmental disabilities. The book is framed by the components.
Interplay between formal and informal care of older people
Kröger T.
(2005)
Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice
Stover, C. S., Meadows, A. L., & Kaufman, J.
(2009)
The objective of this article was to survey available intimate partner violence (IPV) treatment studies with (a) randomized case assignment, and (b) at least 20 participants per group. Studies were classified into 4 categories according to primary treatment focus: perpetrator, victim, couples, or child-witness interventions. The results suggest that extant interventions have limited effect on repeat violence, with most treatments reporting minimal benefit above arrest alone. There is a lack of research evidence for the effectiveness of the most common treatments provided for victims and perpetrators of IPV, including the Duluth model for perpetrators and shelter–advocacy approaches for victims. Rates of recidivism in most perpetrator- and partner-focused treatments are approximately 30% within 6 months, regardless of intervention strategy used. Couples treatment approaches that simultaneously address problems with substance abuse and aggression yield the lowest recidivism rates, and manualized child trauma treatments are effective in reducing child symptoms secondary to IPV. This review shows the benefit of integrating empirically validated substance abuse and trauma treatments into IPV interventions and highlights the need for more work in this area. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice (PDF Download Available). Available from: https://www.researchgate.net/publication/232566911_Interventions_for_Intimate_Partner_Violence_Review_and_Implications_for_Evidence-Based_Practice [accessed Jan 3, 2016].
Into adulthood: a follow-up study of 718 young people who were placed in out-of-home care during their teens
Vinnerljung B, Sallnäs M.
(2008)
In this study, national register data were used to analyse long-term outcomes at age 25 for around 700 Swedish young people placed in out-of-home care during their teens. The sample consisted of 70% of all 13- to 16-year olds who entered out-of-home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental-health problems, teenage parenthood, self-support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non-care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long-term prognosis.
Intresseorganisering och självhjälp
Meeuwisse, Anne
(2005)
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.
Redmond, B., & Richardson, V.
(2003)
Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.
Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.
Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.
Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.
Redmond, B., & Richardson, V.
(2003)
Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.
Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.
Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.
Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.
Kan utbildning för anhörigvårdare vara ett stöd att hantera vardagen?
Renblad, K.
(2007)
Att hantera vardagen - en utbildning som stöd för anhörigvårdare, ÄO FoU-rapport 2007:1. E. Johansson and K. Renblad
Keeping the family balance – adult daughters´ experiences of roles and strategies when supporting caring fathers
Sandberg, J., Eriksson, H., Holmgren, J., & Pringle, K.
(2016)
The Scandinavian countries represent a progressive approach to gender equality and transitions of traditional gender roles but little attention has been paid to gender equality in old age and how normative constructions of gender intersect in the lives of family carers. The aim of this study was to understand how adult daughters experience their roles and strategies when supporting fathers caring for an ill mother. A sample of eight daughters shared their experiences through in-depth interviews. The findings show that the daughters provide substantial and crucial effort and are intimately involved in the caring for their father and the sole contributors towards the emotional support of their fathers. They tend to devote a lot of energy towards picturing their family as 'normal' in terms of the family members adopting traditional roles and activities inside as well as outside the family context. In conclusion, the lack of understanding about gender as a 'norm producer' is something that needs to be further elaborated upon in order for professionals to encounter norm-breaking behaviours. The daughters' position as family carers is often assumed and taken for granted since the intersecting structures that impact on the situations of the daughters are largely invisible.
De skandinaviska länderna representerar en progressiv syn på jämställdhet och förändringar av traditionella könsroller, men lite uppmärksamhet har riktats mot jämställdhet i hög ålder och vad som händer när normativa genuskonstruktioner möter erfarenheter hos äldre anhörigvårdare. Syftet med denna studie var att förstå hur vuxna döttrar erfar sina roller och strategier när de stödjer fäder som tar hand om en sjuk mor. Ett urval av åtta döttrar delade sina erfarenheter i djupintervjuer. Resultaten visar att döttrar ger betydande insatser och är intimt involverade i att ta hand om sin far och är den enda bidragsgivare av emotionellt stöd till sina fäder. Döttrarna ägnar stor energi att framställa familjesituationen som 'normal' genom att anta traditionella roller och verksamheter såväl inom som utanför familjen. Förståelse för genus som normskapare är något som måste beforskas ytterligare för att yrkesverksamma ska kunna möta normbrytande beteenden. Döttrars position som anhörigvårdare tas ofta förgiven eftersom de intersektionella strukturer som påverkar döttrar till vårdande fäder i stort sett är osynliga.
Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families?
Sloper, P., Greco, V., Beecham, J., & Webb, R.
(2006)
Background Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families.
Methods A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need).
Results The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need.
Conclusions Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.
Lag om rätt till ledighet av trängande familjeskäl
SFS
(1998)
En arbetstagare har rätt till ledighet från sin anställning av trängande familjeskäl som har samband med sjukdom eller olycksfall och som gör arbetstagarens omedelbara närvaro absolut nödvändig
Learning How to Mean--Explorations in the Development of Language
Halliday, M. A. K
(1975)
Liggande dans : en metodguide i att starta en grupp för personer med flerfunktionsnedsättning
Hagström, Kerstin
(2011)
Lived experiences of being a father of an adult child with Schizofrenia
Nyström M, Svensson H.
(2004)
The aim of this study is to analyze and describe lived experiences of being a father of an adult child with schizophrenia. Interpretations of interviews with seven Swedish fathers of sons or daughters with schizophrenia revealed a pattern of gradually changing existential consequences. After an initial period of shock when receiving the diagnosis, a long struggle to regain control follows. The findings are presented in a structure based on eight different aspects of this struggle, which seems to be characterized by a balance between grieving and adaptation. An important conclusion is that the fathers' life-world must be attended to in professional family interventions.
Living with Schizophrenia from the perspective of outpatients and their parents
Foldemo, Annica
(2004)
Akademisk avhandling
The aim of this thesis was to investigate how outpatients with schizophrenia experienced their situation in terms of need and quality of life. A further aim was to investigate how their parents experienced the need of their daughter or son and how it influenced their own life.
Lokal modell för samordnad vård och omsorg kring personer med demenssjukdom samt stöd till deras anhöriga
Ekerö kommun
(2013)
Longitudinal mediators of a randomized prevention program effect on cortisol for youth from parentally bereaved families
Luecken, L., Hagan, M.J, Sandler, I.N., Tein, J., Ayers, T.S., & Wolchik, S.A.
(2014)
Abstract
We recently reported that a randomized controlled trial of a family-focused intervention for parentally bereaved youth predicted higher cortisol output 6 years later relative to a control group of bereaved youth (Luecken et al., Psychoneuroendocrinology 35, 785-789, 2010). The current study evaluated longitudinal mediators of the intervention effect on cortisol 6 years later. Parentally bereaved children (N = 139; mean age, 11.4; SD = 2.4; age range = 8-16 years; male; 61% Caucasian, 17% Hispanic, 7% African American, and 15% other ethnicities) were randomly assigned to the 12-week preventive intervention (n = 78) or a self-study control (n = 61) condition. Six years later (mean age, 17.5; SD, 2.4), cortisol was sampled as youth participated in a parent-child conflict interaction task. Using four waves of data across the 6 years, longitudinal mediators of the program impact on cortisol were evaluated. Program-induced increases in positive parenting, decreases in child exposure to negative life events, and lower externalizing symptoms significantly mediated the intervention effect on cortisol 6 years later.
Longitudinal Relationships between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities
Hastings, Richard, P.
(2007)
Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.
multipel skleros en vägledning för patienter och anhöriga
Fagius, J (red.)
(1998)
Multi-sensory rooms: Comparing effects of the Snoezelen and the Stimulus Preference environment on the behavior of adults with profound mental retardation
Fava, L. & Strauss, K.
(2010)
The present study examined whether Snoezelen and Stimulus Preference environments have differential effects on disruptive and pro-social behaviors in adults with profound mental retardation and autism. In N=27 adults these target behaviors were recorded for a total of 20 sessions using both multi-sensory rooms. Three comparison groups were created by diagnosis and motor respective linguistic abilities. Each client was exposed to only one multi-sensory room. Results showed that Snoezelen intervention decreased disruptive behaviors only in individuals with autism, while Stimulus Preference increased pro-social behaviors only in participants with profound mental retardation with co-occurring poor motor and linguistic abilities. Furthermore, several trend analyses of the improved behaviors were conducted throughout all sessions toward short and mid term effects of the multi-sensory room applications. These findings support both the prudence of using the Snoezelen room in individuals with developmental disabilities and the importance of using a Stimulus Preference assessment in multi-sensory environments in clients with profound mental retardation.
Music therapy with bereaved teenagers: a mixed methods perspective
McFerran, K., Roberts, M., & O'Grady, L.
(2010)
Qualitative investigations have indicated that music therapy groups may be beneficial for bereaved teenagers. The existing relationship between young people and music serves as a platform for connectedness and emotional expression that is utilised within a therapeutic, support group format. This investigation confirms this suggestion through grounded theory analysis of focus group interviews. Changes in self-perception were not found as a result of participation, however practically significant results were found on adolescent coping. These cannot be generalized because of the small sample size. Grief specific tools are recommended for use in future investigations in order to capture the emotional impact of music therapy grief work with adolescents.
Mutual resposibility for the aged or the fourth commandment: Who is going to take care of old.
Sundström, G., Johansson, L., & Hassing, L. B.
(2004)
My-Elins mamma har MS
Barbro Ernemo, Nilsson-Bergman
(2003)
Det här är en bok om och hennes familj. My-Elins mamma är också som mammor är mest: snäll, glad och litet tjatig. Men ibland blir mamma jättetrött. Hon har en sjukdom som kallas MS. Den gör att armar och ben inte gör som hon vill. Ibland ser hon konstiga saker och ibland glömmer hon. Sjukdomen gör att allt inte går som planerat i My-Elins familj.
Myocardial infarction after the death of a sibling: A nationwide follow-up study from Sweden
Rostila, M. and Saarela, J., & Kawachi, I.
(2013)
Death of a sibling represents a stressful life event and could be a potential trigger of myocardial infarction (MI). We studied the association between loss of an adult sibling and mortality from MI up to 18 years after bereavement.
We conducted a follow-up study for Swedes aged 40 to 69 years between 1981 and 2002, based on register data covering the total population (N=1 617 010). Sibling deaths could be observed from 1981 and on. An increased mortality rate from MI was found among women (1.25 CI 1.02 to 1.54) and men (1.15 CI 1.03 to 1.28) who had experienced death of an adult sibling. An elevated rate some years after bereavement was found among both women (during the fourth to sixth half-years after the death) and men (during the second to sixth half-years after the death), whereas limited support for a short-term elevation in the rate was found (during the first few months since bereavement). External causes of sibling death were associated with increased MI mortality among women (1.54 CI 1.07 to 2.22), whereas nonexternal causes showed associations in men (1.23 CI 1.09 to 1.38). However, further analyses showed that if the sibling also died from MI, associations were primarily found among both women (1.62 CI 1.00 to 2.61) and men (1.98 CI 1.59 to 2.48).
Our study provided the first large-scale evidence for mortality from MI associated with the death of a sibling at an adult age. The fact that findings suggested associations primarily between concordant causes of death (both died of MI) could indicate genetic resemblance or shared risk factors during childhood. Future studies on bereavement should carefully deal with the possibility of residual confounding.
Mål och policy vid palliativ vård och vård i livets slutskede för äldre och deras närstående i Tranemo : Ett gemensamt synsätt. (Vol. 1).
Brovall, C., Hanson, E., & Magnusson, L.
(2004)
Mänskliga rättigheter - Konventionen om barnets rättigheter
Regeringskansliet
(2006)
Den 20 november 1989 antog Förenta nationernas generalförsamling konventionen om barnets rättigheter. Det innebar ett viktigt tillskott till skyddet för de mänskliga rättigheterna. För första gången samlades de rättigheter som tillkommer alla barn och ungdomar upp till 18 år i ett folkrättsligt bindande dokument. Denna skrift innehåller bl.a. konventionens budskap, förteckning över konventionens artiklar och konventionstexten.
OBS! När FN antog och Sverige ratificerade konventionen om barnets rättigheter låg ansvaret inom UD. Därför tog UD fram en skrift om konventionen, samt en lättläst version. Ansvaret finns nu sedan flera år i Socialdepartementet, med Barnombudsmannen som ansvarig myndighet för att sprida information om Barnkonventionen. Därför hänvisar UD till Barnombudsmannen för information och beställning av trycksaker om Barnkonventionen. UD:s skrifter som tidigare distribuerades i tryckt form, finns fortfarande att ladda ner i pdf-format.
Mänskliga Rättigheter: Konventionen om barnens rättigheter
Hammarberg T.
(2000)
Den 20 november 1989 antog Förenta nationernas generalförsamling konventionen om barnets rättigheter. Det innebar ett viktigt tillskott till skyddet för de mänskliga rättigheterna. För första gången samlades de rättigheter som tillkommer alla barn och ungdomar upp till 18 år i ett folkrättsligt bindande dokument. Denna skrift innehåller bl.a. konventionens budskap, förteckning över konventionens artiklar och konventionstexten.
OBS! När FN antog och Sverige ratificerade konventionen om barnets rättigheter låg ansvaret inom UD. Därför tog UD fram en skrift om konventionen, samt en lättläst version. Ansvaret finns nu sedan flera år i Socialdepartementet, med Barnombudsmannen som ansvarig myndighet för att sprida information om Barnkonventionen. Därför hänvisar UD till Barnombudsmannen för information och beställning av trycksaker om Barnkonventionen. UD:s skrifter som tidigare distribuerades i tryckt form, finns fortfarande att ladda ner i pdf-format.
http://www.barnombudsmannen.se/publikationer/
Mänskliga rättigheter: konventionen om barnets rättigheter
Hammarberg, T.
(2006)
Möjlighet att leva som andra. Ny lag om stöd och service till vissa personer med funktionsnedsättning. Statens offentliga utredningar
SOU
(2008)
LSS-kommittén har haft i uppdrag att göra en bred översyn av lagen om stöd och service till vissa personer med funktionshinder (LSS) och personlig assistans. Kommitténs förslag innebär att LSS ska bestå som rättighetslag för de personer som har de mest omfattande stödbehoven till följd av funktionsnedsättningar. Det behövs dock flera förändringar av lagen. Ett tydligt barnperspektiv skrivs in i LSS. Staten ska ha ett samlat ansvar för personlig assistans. Det ska också bli tydligare regler för hur behovet av personlig assistans ska bedömas. Vidare ska en ny insats i LSS ge rätt till personlig service och boendestöd. Personer med psykiska funktionsnedsättningar ska ha rätt till insatsen daglig verksamhet om de ingår i personkretsen för stöd och service enligt lagen. Kommittén föreslår att lagen om assistansersättning (LASS) ska upphävas. Tillämpliga delar av denna lag ska istället föras in i LSS. Till betänkandet hör ett antal bilagor som publiceras i en särskild volym.
Möjlighet att leva som andra. Ny lag om stöd och service till vissa personer med funktionsnedsättning. Statens offentliga utredningar.
SOU
(2008)
LSS-kommittén har haft i uppdrag att göra en bred översyn av lagen om stöd och service till vissa personer med funktionshinder (LSS) och personlig assistans. Kommitténs förslag innebär att LSS ska bestå som rättighetslag för de personer som har de mest omfattande stödbehoven till följd av funktionsnedsättningar. Det behövs dock flera förändringar av lagen. Ett tydligt barnperspektiv skrivs in i LSS. Staten ska ha ett samlat ansvar för personlig assistans. Det ska också bli tydligare regler för hur behovet av personlig assistans ska bedömas. Vidare ska en ny insats i LSS ge rätt till personlig service och boendestöd. Personer med psykiska funktionsnedsättningar ska ha rätt till insatsen daglig verksamhet om de ingår i personkretsen för stöd och service enligt lagen. Kommittén föreslår att lagen om assistansersättning (LASS) ska upphävas. Tillämpliga delar av denna lag ska istället föras in i LSS. Till betänkandet hör ett antal bilagor som publiceras i en särskild volym.
Möjligheter med tecken för ungdomar och vuxna
Maria Krafft-Helgesson
(2014)
Kom igång med tecken! Det är aldrig för sent! Möjligheter med tecken för ungdomar och vuxna är boken som inspirerar, engagerar och berättar om fördelarna med tecken. Vardagsnära reportage varvas med fakta och kloka ord från personer som dagligen använder tecken i sin kommunikation. Bokens författare Maria Krafft Helgesson är musikterapeut och handledare i AKK och har många års erfarenhet av arbete med kommunikation och tecken.
Kontinuerligt arbete med syskon på habilitering. – Det skall kännas roligt och tryggt i syskongruppen
Samuelsson, Lena, Lindqvist, Lena, Johansson, Inger & Trädgård, Britt Marie
(2005)
Vid habiliteringen i Alingsås har man arbetat med syskongrupper
sedan 1997. På olika sätt hade man då fått upp ögonen för
syskonens behov, dels genom alltmer ökande förfrågningar från
föräldrar om syskongrupper dels genom personalens egen
ökande kunskap och erfarenhet av syskon.
Kort om ADHD hos barn och vuxna. En sammanfattning av Socialstyrelsens kunskapsöversikt
Mossler & Kadesjö
(2004)
ADHD – uppmärksamhetsstörningar och impulsivitet/hyperaktivitet (attention deficit hyperactivity disorder) – bedöms vara ett av de mest studerade tillstånden inom medicinen. Man har beräknat att ungefär tre till sex procent av alla barn i skolåldern har ADHD. Det är ca två till tre gånger vanligare med ADHD hos pojkar än flickor. Huvudsymtomen vid ADHD är uppmärksamhetsstörning, impulsivitet och hyperaktivitet/överaktivitet. Barn med ADHD har svårt att vänta, att kontrollera känslor och humör. Många har ett oförutsägbart beteende. Flertalet har problem med att planera
och organisera sin tillvaro – har brister i vad som kallas hjärnans exekutiva funktioner. En betydande andel barn med ADHD har svårigheter i samspelet med andra. De kan ha svårt att finna meningsfulla fritidsaktiviteter. Det är mycket vanligt att barn och ungdomar med ADHD är ängsliga, osäkra och saknar tilltro till sin förmåga. Många misslyckanden ökar risken för uppgivenhet, oro och depression.
Möten i Gryningen: erfarenheter från psykosocialt behandlingsarbete med späd- och småbarnsfamiljer
Neander, Kerstin
(1996)
Korttidsboende : En kort tids boende?
Nordén, I., Svensson, M., & Veibäck, M.
(2008)
Korttidsboende : Ett boende med många ansikten : Verksamhetstillsyn i Dalarnas kommuner 2007 (Rapport 2007:18).
Loman, E.
(2007)
Korttidsboende : Värdefull insats som söker sin struktur (Rapporter / stiftelsen Stockholms läns Äldrecentrum. 2002:8
Wånell, S. E
(2002)
Korttidsboende för äldre : Hur används korttidsplatserna i Gävleborgs län? : En sammanfattning av tillsyn vid 12 korttidsboenden för äldre i Gävleborgs län hösten 2005 (Rapport 2006:25).
Clemin, C.
(2006)
Kort-tids-boende. En kameleont i äldreomsorgen
Westlund, Peter
(2009)
Ett kort-tids-boende är förbundet med föreställningen att behoven inte bara är omfattande, utan också övergående och kortvariga. Så är det i princip. I realiteten tycks många korttidsvistelser handla om att man inte vet hur det förhåller sig med behoven – om de är övergående eller inte. Av den anledningen tenderar korttidsboendet att vara både en väntplats och en vändplats. En plats för väntan, såväl aktivt som passivt, på att flytta till särskilt boende och en plats varifrån den enskilde vänder hemåt igen – en vändplats.
Ett korttidsboende har således många och skiftande funktioner och kan se ut lite hur som helst. Det kan vara alltifrån insprängda platser till relativt smalt specialiserade enheter, därav benämningen kameleont.
Korttidsplats – vårdform som söker sitt innehåll
Meinow, B., & Wånell, S. E.
(2011)
Denna rapport har kommit till på uppdrag dels från Södermalms stadsdelsförvaltning,
dels Äldreförvaltningen i Stockholms stad. Bakgrunden
är önskemålet från såväl Södermalms stadsdelsnämnd som stadens
äldrenämnd att se vilken roll korttidsvården har och kan ha, och om de
prioriteringar som skett under 2000-talet gagnat de äldre. Korttidsplats,
som är det begrepp Socialstyrelsen rekommenderar, har olika funktioner,
och inkluderar korttidsvård efter sjukhusvistelse, växelvård, avlastning
av anhörig och vård i livets slutskede.
På uppdrag av Södermalms stadsdelsförvaltning har en randomiserad
studie genomförts där de som ansökte om korttidsplats men fick avslag
lottades så att hälften, interventionsgruppen, fick korttidsplats medan
kontrollgruppen gick direkt hem med de insatser stadsdelsförvaltningen
beviljat. Denna studie utökades med ett uppdrag från Socialstyrelsen att
studera alla som skrivs ut från sluten vård under en månad till hemmet
på Södermalm. På uppdrag av Äldreförvaltningen har dessa båda studier
kompletterats med en genomgång av artiklar och rapporter om korttidsvård
samt analys av data avseende stadens korttidsvård.
De som kommer till ett korttidsboende befinner sig i en mycket skör
situation i livet. Korttidsplats för återhämtning, mobilisering och fortsatt
rehabilitering efter sjukhusvård utvecklades i hela landet efter Ädelreformen,
och har fortsatt att sedan dess öka i många kommuner. Bidragande
orsak har varit allt färre vårdplatser och kortare vårdtider i den
somatiska vården samt att fler har hemtjänst och färre bor i särskilt
boende.
Andelen äldre som erhåller korttidsplats varierar mellan landets
kommuner, liksom mellan Stockholms stadsdelar. I Göteborg hade 2008
1,4 procent av de som är 65 år och äldre korttidsplats, i Stockholm var andelen
0,25 procent.
I Stockholms stad har antalet som beviljas korttidsplats minskat sedan
2001. Det är främst korttidsvård efter sjukhusvistelse som minskat,
medan korttidsvård som anhörigstöd endast minskat marginellt. Minskningen
är tydligast för de äldre kvinnorna, under en fyraårsperiod 2007-
2010 minskade antalet kvinnor 85 år och äldre som fick korttidsplats från
186 till 82, för männen var minskningen från 116 till 88 personer.
Några skäl till att korttidsplats numera sällan erbjuds efter sjukhusvistelse
är att inte förlänga vårdkedjan och att staden inte erbjuder rehabilitering
inom korttidsvården eftersom rehabilitering i ordinärt boende är
ett landstingsansvar. Effekten kan dock bli att den äldre inte får
tillräcklig tid för att hämta krafter och träna så att hon kan klara sin
vardag bättre själv. Mycket talar för att en ytterligare tids vård för vissa
2
äldre kan vara kostnadseffektiv för samhället och innebära ökad trygghet
för den äldre. Resultaten från den randomiserade studien på Södermalm
tyder bl.a. på
Interventionsgruppen förbättrade sin rörelseförmåga i genomsnitt mer än
de som skrevs ut till hemmet
Andelen som minskade sitt vårdberoende var större i interventionsgruppen
jämfört med dem som skrevs ut till hemmet
Indexvärdet för den hälsorelaterade livskvaliteten ökade för interventionsgruppen,
för dem som skrevs ut direkt till hemmet var den nästan
oförändrad (statistiskt signifikant skillnad).
Signifikant större förbättring när det gäller oro/nedstämdhet samt förmågan
att klara huvudsakliga aktiviteter bland de äldre som fick korttidsplats.
Inga skillnader i kostnad för äldreomsorg (korttidsplatsen inräknad!).
Tydlig tendens till att äldre som hade fått korttidsvård blev inlagda på
sjukhus i mindre utsträckning under ett år efter utskrivning jämfört med
de äldre som skrevs direkt ut till hemmet.
Tydlig tendens till en lägre dödsrisk under ett års tid efter utskrivning
bland äldre som hade fått korttidsvård.
Det blev således inte dyrare för interventionsgruppen, som fick korttidsplats,
än för gruppen som inte lottades att få den insatsen, däremot blev
det bättre för interventionsgruppen i flera avseenden.
En form som nästan försvunnit i Stockholms stad är korttidsplats i
väntan på plats i vård- och omsorgsboende. Detta skäl till att bevilja korttidsplats
har kritiserats bl.a. av Socialstyrelsen.
Korttidsvården har en viktig roll genom att ge anhöriga avlastning. En
förutsättning för att korttidsvården ska vara en fungerande avlastning för
den anhörige är att den har ett socialt innehåll i vardagen och att den
anhörige också uppmärksammas. Pensionat Hornskroken och Kinesen i
Stockholm är goda exempel. Korttidsboende med denna inriktning måste
fokusera både på den som vistas på korttidsplatsen och den anhörige.
Korttidsvård kan också användas som sviktplats. Det saknas statistik för
denna vårdform, varför det är svårt att bedöma i vilken utsträckning den
utnyttjas så. I Stockholms län finns möjlighet till direktinlägg på geriatrisk
klinik. Det kan finnas skäl att följa upp om korttidsplats skulle
kunna användas när behovet främst är att få vila upp, äta och återhämta
kraft genom god omvårdnad och den geriatriska platsen när det krävs mer
av medicinsk behandling och/eller rehabilitering.
3
Vård i livets slutskede är i Stockholms stad ovanligt i korttidsvården.
Staden saknar korttidsenheter med palliativ inriktning. I stället erbjuds
plats på vård- och omsorgsboende, vilket inte är helt adekvat i den livsfasen.
Beskrivningarna av vardagen på korttidsboendet andas ofta innehållslöshet,
torftighet både i det sociala innehållet och i boendemiljöerna. Det
saknas alltför ofta tydliga beställningar från biståndshandläggaren vad
som är syftet med vistelsen, och genomförandeplaner som visar vad korttidsvården
ska kunna ge. För att korttidsvården ska kunna utvecklas och
få den roll den kan ha behövs tydlighet i beställningen till korttidsvården,
tydlighet i biståndsbeslutet och tydliga genomförandeplaner hos utföraren.
För att detta ska bli möjligt måste korttidsvården få mer renodlade uppdrag,
med inriktning på t.ex. svikt, rehabilitering, avlösning och vård i
livets slutskede. Det krävs mer specialisering, inte att allt blandas på
samma enhet. Viktigt är också att inte blanda personer med demenssjukdom
med dem som är kognitivt klara.
Kris och utveckling
Cullberg, Johan
(2001)
Människans liv kantas av psykiska kriser. En del utlösta av plötsliga och oväntade, svåra händelser; andra hör det normala livet till. Krisen är ofta en förutsättning för utveckling och mognad, men den kan också leda till livslång psykisk invaliditet om inte den drabbade får sakkunnig hjälp
Det är trettio år sedan den första utgåvan av Johan Cullbergs klassiska bok Kris och utveckling kom 1975. Den har lästs och uppskattats av hundratusentals svenskar - såväl av studenter som av människor som själva befinner sig i kris eller kommer i kontakt med människor i krislägen. Den har också översatts till flera andra språk.
Mycket i samhället, liksom inom psykiatrin, har förändrats. Det har inneburit att en omarbetning av boken känts angelägen, även om grundstrukturen står kvar. Kvar står också den hoppfulla synen på krisen som en hävstång för den mänskliga utvecklingen. Boken har kompletterats med ett avsnitt om katastrofpsykiatri och sena stressreaktioner av docent Tom Lundin.
Krisstöd för barn och ungdomar vid allvarlig händelse: en forskningsöversikt
Leijen, K. & Pääaho, S.
(2014)
Krisstöd vid olyckor, katastrofer och svåra händelser: att stärka människors motståndskraft
Hedrenius, S. & Johansson, S.
(2013)
Den omvälvande kunskapsutvecklingen inom krisstöd har helt förändrat synen på vad som faktiskt hjälper barn och vuxna vid svåra händelser. Debriefing rekommenderas till exempel inte längre i det akuta skedet internationell konsensus och Socialstyrelsen förordar i stället Psykologisk första hjälp.
Utifrån aktuell forskning och egna praktiska erfarenheter förklarar författarna till boken Krisstöd hur vi reagerar vid svåra händelser, från allvarliga sjukdomsbesked till större katastrofer. Med levande och konkreta exempel beskriver de hur man arbetar med Psykologisk första hjälp för att stärka människors motståndskraft. Barns och ungas reaktioner och behov ägnas extra omsorg, samt hur man som personal kan ta hand om sig själv och varandra.
Denna grundbok om krisstöd är skriven för blivande och yrkesverksamma sjuksköterskor, poliser, socionomer, psykologer, läkare, personalvetare och andra som möter människor i det akuta skedet av svåra händelser i sitt dagliga arbete eller vid större olyckor och katastrofer.
Nationell kartläggning – stöd till barn vars föräldrar har kontakt med psykiatrin
Renberg, Hannele
(2007)
Det finns ett intresse på olika håll i landet och en önskan att utveckla metoder, där barnen
till vuxenpsykiatrins patienter verkligen uppmärksammas och deras röst blir hörd.
Dock saknar hälften av de psykiatriska klinikerna, som har besvarat enkäten
"handlingsplaner och rutiner" för hur man möter barn till föräldrar med psykisk sjukdom.
Själva enkäten skickades ut februari 2006.
Många efterfrågar också ett formaliserat uppdrag för att uppmärksamma barnen. Utifrån
svaren visar det sig att de orter där man har satsat på arbeta fram rutiner och
handlingsplaner uppmärksammar man patienternas barn på olika sätt. På dessa ställen har
man också personer som har det övergripande ansvaret för dessa frågor.
Många anser att det ska finnas någon eller några personer på kliniken som har det
övergripande ansvaret att se till att rutinerna fungerar och att patienternas barn
uppmärksammas. Dessa personer ska ha möjlighet att själva kunna ta del av det som händer
på området och sedan föra kunskapen vidare.
På många håll har man jobbat i projekt för att arbeta fram handlingsplaner. Efter att
projektet har upphört har det varit svårt att hålla barnperspektivet levande.
Även om man har rutiner och handlingsplaner anser 87 % av svarade att de saknar en
modell att arbeta efter.
Från Västerbotten nämner man Beardslee familjeintervention som en fungerande metod.
Där har man sedan våren 2005 haft utbildningar i metoden.
Även i enkätsvaret från Säter i Dalarna nämner denna metod. De vill att flera behandlare
ska få möjlighet att utbilda sig i metoden.
Från psykiatrin södra Ytterös behandlingsenhet i Stockholm nämner man att de använder i
Beardslee inspirerade samtal.
Det som gör denna familjeintervention unik är att det är en metod där man gör insatser för
den sjuka föräldern, friska föräldern, barnen (intervju med varje barn för sig) och slutligen
hela familjen.
Man använder sig av en manual som ger struktur till samtalen med fokus på föräldraskapet
och barnen.
För övrigt nämner man vid enkätsvaren olika typer av samtal, där man tar upp barnens
situation och informerar om förälderns sjukdom. Man har familjesamtal antingen
tillsammans med föräldrarna eller att personalen träffar enbart barnen.
3På många ställen finns det barngrupper. Kommunen håller oftast i barngrupperna, men på
några få ställen håller vuxenpsykiatrin själva i dessa. På något ställe har man barngrupper
tillsammans med kommunen, barnpsykiatrin och kyrkan. På några få ställen har man
parallella föräldragrupper.
Speciellt i större städer har man olika typer av barngrupper t.ex. barn i familjer där någon
har en psykossjukdom, barn i familjer med missbruk och barn i familjer, där det har
förekommit våld.
Däremot finns inte någon enhetlig linje, då det gäller vilken typ av manual man använder i
barngrupperna.
Man saknar också i stor utsträckning rutiner för att ta hand om barnen i samband med en
förälders suicidförsök eller suicid.
Man kan dra den slutsatsen, att de kliniker som har handlingsplaner och rutiner också i
större utsträckning har barnrelaterade samtal.
Kliniker som saknar rutiner har i betydligt mindre utsträckning barnrelaterade samtal.
Har man rutiner och handlingsplaner har man också väl fungerande samverkansrutiner med
t.ex. socialtjänsten, barnpsykiatrin och barnhälsovården.
Det finns en önskan om en enhetlig metod hur man ska möta barnen till vuxenpsykiatrins
patienter.
Många efterfrågar också om ett nationellt nätverk så att man ska kunna jobba vidare med
dessa frågor
Nationell strategi för ett utvecklat föräldrastöd – en vinst för alla. Nationell strategi för samhällets stöd och hjälp till föräldrar i deras föräldraskap. Föräldrastödsutredningen
SOU
(2008)
Kulturmöten i hemtjänst. En intervjuundersökning med förslag till handlingsplan. Nordväst FoU-rapport 2.
Grbic, A.
(2002)
Kundval inom äldreomsorgen
Socialstyrelsen
(2007)
Kunskap om familjedaghem
Karlsson, Malene
(2004)
Nationella indikatorer för God vård: hälso och sjukvårdsövergripande indikatorer och indikatorer i Socialstyrelsens nationella riktlinjer
Socialstyrelsen
(2009)
Socialstyrelsen presenterar för första gången en samlad uppsättning nationella indikatorer för God vård. Därmed tas ytterligare steg i arbetet med att strukturera uppföljningen av hälso- och sjukvården.
God vård och omsorg
Socialstyrelsen lanserade begreppet God vård 2007 och begreppet
God kvalitet i socialtjänsten 2008. Idag används det gemensamma begreppet God vård och omsorg som samlingsbegrepp för de egenskaper en god vård respektive en god kvalitet i socialtjänsten. God vård och omsorg utgår från lagstiftningen i Hälso- och sjukvårdslagen och Socialtjänstlagen. De sex områdena är
vården och omsorgen ska vara kunskapsbaserad och bygga på bästa tillgängliga kunskap
vården och omsorgen ska vara säker. Riskförebyggande verksamhet ska förhindra skador. Verksamheten ska också präglas av rättssäkerhet
vården och omsorgen ska vara individanpassad och ges med respekt för individens specifika behov, förväntningar och integritet. Individen ska ges möjlighet att vara delaktig
vården och omsorgen ska vara effektiv och utnyttja tillgängliga resurser på bästa sätt för att uppnå uppsatta mål
vården och omsorgen ska vara jämlik och tillhandahållas och fördelas på lika villkor för alla
vården och omsorgen ska vara tillgänglig och ges i rimlig tid och ingen ska behöva vänta oskälig tid på vård eller omsorg.
Innebörden av begreppet God vård inom hälso- och sjukvård förtydligas i rapporten utifrån det arbete som sex expertarbetsgrupper genomfört och inkomna synpunkter från hälso- och sjukvården.
Uppföljningsområden och indikatorer
De hälso- och sjukvårdsövergripande nationella indikatorer som Socialstyrelsen presenterar i denna rapport presenteras inom ramen för uppföljningsområden. Dessa uppföljningsområden visar på viktiga aspekter inom hälso- och sjukvården som tillsammans belyser processer, resultat och kostnaden utifrån God vård.
Sammanlagt presenteras 24 uppföljningsområden och 28 hälso- och sjukvårdsövergripande indikatorer. Rapporten visar på en brist på information för möjligheten att systematiskt och heltäckande följa upp en stor del av de uppföljningsområden som lyfts fram. Genom att identifiera områden som viktiga för uppföljning av God vård tar Socialstyrelsen ett ansvar för att fortsättningsvis stödja arbetet med att utveckla sätt att följa upp de områden som lyfts fram.
Vidare presenteras i rapporten patient- och sjukdomsspecifika indikatorer baserade på Socialstyrelsens nationella riktlinjer. För närvarande finns nationella riktlinjer med indikatorer för hjärtsjukvård, prostatacancer, bröstcancer och kolorektalcancer. Inom kort publiceras även nationella riktlinjer för strokesjukvård samt diabetessjukvård. Ett flertal nationella riktlinjer med indikatorer kommer att publiceras under 2010 och 2011. Indikatorer kommer då att finnas för demens, depression och ångest, rörelseorganens sjukdomar, sjukdomsförebyggande åtgärder, psykosociala insatser för schizofreni samt lungcancer.
Nationella öppna jämförelser och utvärderingar
Socialstyrelsen kommer att använda såväl de hälso- och sjukvårdsövergripande indikatorerna som indikatorerna från de nationella riktlinjerna i återkommande nationella öppna jämförelser och som underlag för uppföljningar och utvärderingar av hälso- och sjukvården. Syftet är att öka tillgängligheten till information om hälso- och sjukvårdens processer, resultat och kostnader och målsättningen är att denna information i sin tur ska användas för förbättringar i hälso- och sjukvården.
Socialstyrelsen kommer också att utifrån de öppna jämförelserna, uppföljningarna och utvärderingarna ge tydliga rekommendationer till såväl landstingen som staten om områden där förbättringar av hälso- och sjukvården bör genomföras. Myndigheten kommer även att bedöma kvaliteten och effektiviteten i hälso- och sjukvården.
Kunskap om gott åldrande. Tema Vård och Omsorg
Rahm Hallberg, I.
(2005)
Kunskapsunderlag för pedagoger om barn och elever med medfödda skador av alkohol
Rangmar Jenny
(2015)
Syftet med kunskapsunderlaget är att göra information om barn och elever med medfödda skador av alkohol lättillgänglig för pedagoger, men det kan även användas av andra, som möter barn och elever med medfödda skador av alkohol
Kvalitet i fritidshem. Skolverkets Allmänna råd och kommentarer
Skolverket
(2007)
De allmänna råden riktar sig till både kommunen och den personal som arbetar på fritidshemmet och illustrerar hur ansvarsfördelningen mellan kommun och verksamhet ser ut. Det är Skolverkets förhoppning att dessa allmänna råd med kommentarer kommer att ligga till grund för diskussioner om hur verksamheten kan bedrivas och att de ska ge ett gott stöd för att utveckla verksamheten.
De befintliga allmänna råden kan tillämpas till dess att de nya allmänna råden har beslutats.
Kvalitet i äldreomsorg ur ett anhörigperspektiv
Magnusson Lennart, Hanson ELizabeth, Larsson Skoglund Annica, Ilett Richard, Sennemark Eva, Barbabella Francesco, Gough Ritva
(2016)
Nationellt kompetenscentrum anhöriga, Nka, har tagit fram rapporten "Kvalitet i äldreomsorg ur ett anhörigperspektiv" på uppdrag från Socialdepartementet. Rapporten ingår i den nationella kvalitetsplanen för äldreomsorgen.
I rapporten framgår det tydligt att trygghet är själva förutsättningen för att kunna skapa bästa och mesta möjliga välbefinnande för anhöriga och äldre närstående. Andra viktiga byggstenar är tillhörighet, delaktighet och betydelsefullhet. Det finns också ett behov av kompetensutveckling – både i verksamheterna och hos de anhöriga. I kunskapssammanställningen framgår också att anhöriga och äldre närstående tenderar att bemötas och behandlas olika beroende på den utbildning, arbete och social position personen har. Detsamma gäller kön, etnisk tillhörighet, trosuppfattning, funktionsnedsättning, sexuell läggning och ålder. Rapporten tar upp en rad åtgärder för att utveckla kvaliteten i vården och omsorgen för äldre ur ett anhörigperspektiv.
Kvarboende eller flyttning på äldre dar. En kunskapsöversikt
Larsson K.
(2006)
Rapporten sammanställer aktuell kunskap om de äldres boende, både ordinärt (det vill säga att bo "hemma") och särskilt boende. Syftet är också att beskriva faktorer som leder till flyttning respektive kvarboende på äldre dagar
Den så kallade kvarboendeprincipen, att samhället ska möjliggöra för den enskilde att kunna bo kvar i sitt eget hem, har varit den officiella policyn i decennier. Äldre personers faktiska möjlighet att bo kvar påverkas av en mängd faktorer som hälsa, familjeförhållanden, ekonomi samt bostädernas tillgänglighet för dem med funktionsnedsättning
Kvinno- och barnperspektiv på insatser inom missbruks- och beroendevården
Trulsson, K. & Segraeus, V.
(2011)
Nationella riktlinjer/standarder för sörjandestöd i Storbritannien och Nordirland. Svensk version av Standards for Bereavement Care in the UK. E-publikation
Grimby A. (övers), Johansson Å. (övers)
(2008)
Som ett led i säkerställandet av trygghet, lämplighet och etik i utövande av sörjandestöd i Sverige har vi som forskare och praktiskt verksamma på detta område studerat andra länders regelverk. Då vi anser, att Storbritannien och Nordirland (refereras i texten till U.K.) kommit långt i detta hänseende - och vi också beretts tillfälle att på plats ta del av engelska stödorganisationers arbetssätt och vägledande regler - vill vi gärna vidarebefordra dokumentet och regelverket " Standards for Bereavement Care in the UK", i svensk version "De nationella riktlinjerna för sörjandestöd i Storbritannien och Nordirland". Detta sker med de engelska upphovsmännens samtycke och förhoppning om att värna om sörjandestödet även utanför deras hemland. (Engelsk titel: Standards for Bereavement Care in the UK).
Nationellt kompetenscentrum Anhöriga och Svenskt Demenscentrum. Socialstyrelsens bedömning av att långsiktigt säkerställa verksamheten
Socialstyrelsen
(2015)
Socialstyrelsen har fått i uppdrag av regeringen att långsiktigt säkerställa
verksamhet i form av ett nationellt kompetenscentrum för anhörigstöd samt
ett nationellt kompetenscentrum inom demensområdet.
Nationellt kompetenscentrum Anhöriga (NkA) och Svenskt Demenscentrum
(SDC), som inrättades 2008, har sedan starten bedrivit sin verksamhet
utifrån ettåriga regeringsuppdrag. Socialstyrelsen ansvarar för ett flertal
andra nationella centrumbildningar med olika karaktär och förvaltning. I
jämförelsesyfte har erfarenheterna från två andra centrumbildningar sammanställts.
De är Nationellt Kunskapscenter för dövblindfrågor (NKCdb) och
Nationella funktionen för sällsynta diagnoser (NFSD), vilka båda har ett
uppdrag av likartad karaktär som NkA och SDC. Förvaltningen av NKCdb
och NFSD bygger på upphandling.
Erfarenheterna visar att upphandling av nationell kompetenscentrumverksamhet,
medför påtagliga svårigheter. Det främsta skälet är att det saknas
konkurrerande anbudsgivare. Därmed blir inte upphandling ett verktyg för att
driva fram bästa möjliga kvalitet. Ett vanligt ska- krav vid upphandling, är att
anbudsgivaren ska ha erfarenhet av motsvarande verksamhet, något som
oftast inte finns. Eftersom det heller inte handlar om konkurrens om pris, dvs.
ersättning för att driva verksamheten, faller också denna anbudsskiljande
faktor bort. Det är Socialstyrelsens erfarenhet att upphandling är en resurskrävande
uppgift, både för Socialstyrelsen och anbudsgivare, till ringa
nytta.
En verksamhet som har ettårig finansiering har svårt att utvecklas långsiktigt.
Både NkA och SDC med sina utvidgade uppdrag kan svårligen leva upp
till uppdragen på en sådan osäker ekonomisk grund. NkA och SDC har under
de åtta år de funnits, byggt upp mycket omfattande nätverk av kontaker,
något som skulle raseras om en annan aktör fick uppdraget.
Mot denna bakgrund, bedömer Socialstyrelsen, för att långsiktigt säkerställa
verksamheten, att Nationellt kompetenscentrum Anhöriga (NkA) och
Svenskt Demenscentrum (SDC) bör få en treårig statsbidragsfinansiering.
Socialstyrelsen ska följa upp och utvärdera att verksamheterna bedrivs i
enlighet med uppdragen. Socialstyrelsen anser att en utvecklad uppföljning
och utvärdering kan vara ett sätt att kvalitetssäkra verksamheterna. Därför
har Socialstyrelsen tagit fram ett förslag på hur en årlig uppföljning av
verksamheterna skulle kunna genomföras. Genom uppföljning och utvärdering
av verksamheterna får Socialdepartementet och regeringen en fortlö-
pande information om verksamheternas resultat.
Nationellt kunskapsnätverk med inriktning på psykiska funktionshinder och hjälpmedel
Folkesson Per
(2009)
Nationellt kunskapsnätverk med inriktning på psykiska funktionshinder och hjälpmedel
Folkesson Per
(2009)
Syftet med projektet var att starta ett nationellt kunskapsnätverk inom området psykiska funktionshinder och hjälpmedel. Kunskapsnätverket ska fungera som utbildare inom området, visa på arbetsmetoder för utprovning av hjälpmedel, ge information, råd och stöd i förskrivningsprocesser och utgöra en mötesplats för olika aktörer inom området psykisk ohälsa
Nationellt kunskapsstöd för god palliativ vård i livets slutskede. Vägledning, rekommendationer och indikatorer. Stöd för styrning och ledning.
Socialstyrelsen
(2013)
Detta nationella kunskapsstöd ska stödja vårdgivarna att utveckla den palliativa vården, underlätta uppföljning och kvalitetssäkring samt tillgodose en likvärdig vård för patienterna. Socialstyrelsens kunskapsstöd och det nationella vårdprogrammet för palliativ vård, som tagits fram av professionen själv, kompletterar varandra och kan tillsammans utgöra en gemensam grund för ett gott omhändertagande av personer i livets slutskede.
De primära målgrupperna för kunskapsstödet är beslutsfattare inom hälso- och sjukvården och socialtjänsten, såsom politiker, chefstjänstemän och verksamhetschefer. En annan viktig målgrupp är professionen.
Kunskapsstödet fokuserar på palliativ vård i livets slutskede.
En gemensam uppfattning om vårdens innehåll underlättar samordning
En god palliativ vård utgår från de fyra hörnstenarna symtomlindring, multiprofessionellt samarbete, kommunikation och relation samt stöd till närstående. Vården ska omfatta alla, oavsett ålder och diagnos.
För att underlätta planering, ansvarsfördelning och samordning mellan olika aktörer behöver hälso- och sjukvården och socialtjänsten utforma sin palliativa vård och omsorg efter de fyra hörnstenarna och ha en gemensam utgångspunkt i processen för god palliativ vård.
Det har också betydelse att hälso- och sjukvården och socialtjänsten använder termer och definitioner om palliativ vård på ett konsekvent och systematiskt sätt. Det är en förutsättning för förbättrad informationsöverföring och dokumentation, och därmed för en säker vård för patienten. För att underlätta detta arbete har Socialstyrelsen har tagit fram ett antal termer och definitioner om palliativ vård i livets slutskede.
En anpassad palliativ vård
Den palliativa vården i livets slutskede behöver vidgas till att omfatta fler diagnoser än cancer, som den palliativa vården traditionellt har utgått från, och integreras i vården av kroniska sjukdomar. Det är angeläget för att bland annat kunna möta de äldres behov. Symtomlindring, självbestämmande, delaktighet och det sociala nätverket är väsentliga delar för livskvaliteten och för en god vård i livets slutskede.
Barn som får palliativ vård behöver, precis som vuxna, vårdas utifrån sina individuella behov. Det är angeläget att personal inom vård och omsorg som ger palliativ vård till barn har kunskap om och kompetens i att kommunicera med barn.
Samordning krävs på alla nivåer
Samordning är en grundläggande förutsättning för en god palliativ vård. Hälso- och sjukvården och socialtjänsten ska samordna sina olika insatser så att vården och omsorgen blir av god kvalitet för den enskilda patienten.
Svårt sjuka personer är ofta särskilt beroende av god kontinuitet i vård och omsorg. Vid livshotande tillstånd ska en fast vårdkontakt utses och den fasta vårdkontakten ska vara legitimerad läkare. Inom kommunal hälso- och sjukvård där det inte finns läkare ska den medicinskt ansvariga sjuksköterskan se till att det finns rutiner för att läkare eller annan hälso- och sjukvårdspersonal kontaktas när en patients tillstånd fordrar det.
Hälso- och sjukvården ska också ge information och samråda med patienten om olika behandlingsalternativ. Det har betydelse att informationen anpassas efter personens förmåga att ta till sig det som sägs.
Närstående har rätt att få stöd
Socialtjänsten ska erbjuda stöd till personer som vårdar eller stöder en närstående som är långvarigt sjuk, äldre eller har en funktionsnedsättning. När det gäller barn som har en svårt sjuk och döende förälder ska hälso- och sjukvården uppmärksamma barnets behov av information och stöd.
Det är viktigt att hälso- och sjukvården och socialtjänsten tar ställning till hur ett stöd till närstående bör utformas.
Etiska frågor är centrala i palliativ vård
Vård i livets slutskede kräver ofta etiska överväganden. Det är därför angeläget att vård- och omsorgspersonal får kunskap om etiska principer, förhållningssätt och bemötande, och får möjlighet att samtala om etiska frågor.
Rekommendationer om specifika åtgärder
Socialstyrelsens rekommendationer för palliativ vård i livets slutskede omfattar cirka 30 rekommendationer om specifika åtgärder. Rekommendationerna har tagits fram enligt processen för nationella riktlinjer och fokuserar på symtomlindring och kommunikation.
Socialstyrelsens rekommendationer avser att bidra till att hälso- och sjukvårdens och socialtjänstens resurser används effektivt, fördelas efter behov samt styrs av systematiska och öppna prioriteringsbeslut. Rekommendationerna ska främst ge vägledning för beslut på gruppnivå.
Några rekommendationer har Socialstyrelsen bedömt som särskilt centrala ur ett styr- och ledningsperspektiv. Det gäller exempelvis rekommendationerna om att hälso- och sjukvården och socialtjänsten bör erbjuda
fortbildning och handledning i palliativ vård till personal inom vård och omsorg, i syfte att lindra symtom och främja livskvalitet hos patienter i livets slutskede
regelbunden analys och skattning av smärta hos patienter som har smärta i livets slutskede samt strukturerade bedömningar av patientens symtom, i syfte att ge patienten en så adekvat symtomlindring som möjligt
samtal med patienter om vårdens innehåll och riktning i livets slutskede, i syfte att förebygga oro och missförstånd samt förbättra livskvaliteten hos personer i livets slutskede.
Rekommendationerna och bedömningarna kan få konsekvenser för vården och omsorgen
Socialstyrelsen uppskattar att bedömningarna och rekommendationerna i kunskapsstödet kan få betydande organisatoriska och ekonomiska konsekvenser för hälso- och sjukvården och socialtjänsten, eftersom tillgången till palliativ vård i dag är liten i jämförelse med behovet. Dessutom är den ojämnt fördelad över landet.
När det gäller konsekvenser för rekommendationer om specifika åtgärder bedömer Socialstyrelsen att rekommendationerna om fortbildning och handledning av personal som ger palliativ vård kan få betydande ekonomiska konsekvenser för hälso- och sjukvården och socialtjänsten, eftersom de gäller en så stor grupp. Kostnadsökningen är dock svår att beräkna eftersom det beror på hur många som deltar och hur omfattande fortbildningen och handledningen är.
Rekommendationerna om smärtanalys och regelbunden smärtskattning samt regelbunden användning av symtomskattningsinstrument kan leda till ökade kostnader på kort sikt. Kostnaderna gäller då främst utbildning av personal, anpassning av symtomskattningsinstrument till lokala förhållanden och utveckling av rutiner för användning och dokumentation.
Rekommendationen om att erbjuda samtal med patienter om vårdens innehåll och riktning i livets slutskede kan leda till en kostnadsbesparing för hälso- och sjukvården. Tidsåtgången för samtalen i sig leder endast till marginellt ökade kostnader.
Indikatorer och datakällor
Socialstyrelsen har tagit fram förslag på sex indikatorer och tre utvecklingsindikatorer som ska kunna spegla kvaliteten i den palliativa vården. Indikatorerna ska kunna användas som underlag för uppföljning och utveckling av verksamheter samt för öppen redovisning av hälso- och sjukvårdens och socialtjänstens strukturer, processer, resultat och kostnader.
Ett stort problem för uppföljningen av den palliativa vården är att det i dag saknas datakällor. Det visar bland annat Socialstyrelsens kartläggning av information om personers sista tid i livet från sex olika nationella kvalitetsregister.
Socialstyrelsens bedömning är att de nationella registren kan förbättras, både när det gäller generell information om de avlidna och när det gäller specifikt information om palliativ vård. Till exempel saknas ofta information om var personer avlider, och särskilda palliativa vårdinsatser redovisas i mycket liten utsträckning i registren. En bidragande orsak kan vara att klassifikationen av vårdåtgärder (KVÅ) för närvarande inte medger någon noggrannare beskrivning av vad som görs.
Nationellt kvalitetsregister för habilitering
HabQ
(2013)
HabQ är ett samarbete mellan föreningen Sveriges habiliteringschefer och flertalet regioner/landsting samt Hälsouniversitetet - Avdelningen för fysioterapi i Linköping.
Natl Forum Hosp H. Informal carer bereavement outcome: relation to quality of end of life support and achievement of preferred place of death
Grande, G. E. & Ewing, G.
(2009)
Nattfrid? Om tillsyn på natten för äldre personer med hemtjänst
Abrahamson Löfström, C., Larsson, N.
(2012)
Om tillsyn på natten för äldre personer med hemtjänst. Projektet "Nattfrid" handlade om att erbjuda äldre personer i eget boende tillsyn på natten med hjälp av en webbkamera istället för eller som ett komplement till tillsyn genom personligt besök. Under perioden september 2011 till och med oktober 2012 genomfördes projektet i tre kommuner, Göteborg, Järfälla och Varberg. 23 personer fick tillsyn på natten via webbkamera. Rapporten innehåller en utvärdering av projektet. FoU-enheterna FoU i Väst/GR och FOU har undersökt de äldre personernas, anhörigas och nattpersonalens upplevelser av tillsyn via webbkamera. De har också gjort en kostnadsmässig jämförelse mellan de båda formerna av tillsyn.
Navigating the care system: A guide for providers to help family caregivers
Coleman, B.,
(2004)
Navigeringskurs för anhöriga till personer med demenssjukdom. En utvärdering av ett projekt på Dalens minnesmottagning. Rapport 2013:6.
Sonde, L., & Gurner, U.
(2013)
Anhörigkonsulenterna i stadsdelarna Enskede-Årsta-Vantör, Farsta, Skarpnäck
och Södermalm, tillsammans med minnesmottagningen vid Capio geriatrik på
Dalens sjukhus, genomförde under hösten 2012 en navigeringskurs för anhöriga.
Målgruppen var anhöriga till personer som nyligen genomgått en minnesutredning.
Syftet med kursen var att ge deltagarna kunskaper om demenssjukdomar
och information om vilka resurser kommun och landsting har för att möta upp de
drabbades och anhörigas behov.
Navigeringskursen gavs som en föreläsningsserie vid sju tillfällen på torsdagseftermiddagar.
Varje tillfälle varade ungefär 90 minuter och genomfördes i minnesmottagningens
lokaler. I navigeringskursen gavs information om demenssjukdomar,
kognition och bemötande, hjälpmedel, krisbearbetning samt om kommunens
stöd till anhöriga.
Stiftelsen Stockholms läns Äldrecentrum fick ett uppdrag att undersöka om navigeringskursen
tillför anhöriga användbar kunskap och ger dem en bättre navigeringsförmåga
i den vård och omsorg som erbjuds.
Undersökningen genomfördes med hjälp av intervjuer med deltagare och anordnare
före och efter navigeringskursen, samt med deltagarna sex månader efter
kursens avslut.
Deltagarna uppskattade navigeringskursen. En majoritet trodde att kursen gjort
dem bättre rustade att möta framtida utmaningar. Att kursen vände sig till både
barn, barnbarn och vänner förutom make/maka var också uppskattat. Samtidigt
var både deltagarna och anordnarna överrens om att navigeringskursen kan och
bör utvecklas.
För kursansvariga är det viktigt att rikta fokus på att för att kunna navigera behöver
anhöriga, förutom kunskap om själva sjukdomen, hjälpmedel och bemö-
tande, även kunskap om hur den vård och omsorgssituation ser ut som de ska
navigera i efter det att minnesutredningen är klar.
I rapporten ges ett antal förslag till förbättring och utveckling av navigeringskursen.
För att öka antalet deltagare bör ett formaliserat erbjudande om kursen ges
till samtliga anhöriga i samband med utskrivning från minnesmottagningen.
Kurstiderna behöver anpassas till förvärvsarbetande anhöriga som nu har svårt
att komma ifrån arbetet. Ett kurskompendium bör tas fram för att hålla informationen
aktuell. Föreläsarskaran behöver breddas utanför kretsen anhörigkonsulenter
och personal från minnesmottagning, t.ex. primärvård, biståndshandläggare
och ansvariga från dagvårdverksamheter, hemtjänst och särskilt boende.
Lag om nationella minoriteter och minoritetsspråk. SFS 2009:724
Svensk författningssamling
(2009)
Ledningssystem för kvalitet och patientsäkerhet
Socialstyrelsen
(2005)
Neuropsychological assessment (4th ed.).
Lezak, M. D.
(2004)
Known as "the bible" in its field, this classic text is an essential resource for students learning the field of clinical neuropsychology
This text provides timeless descriptions of all of the major syndromes, and updated information on assessment techniques and treatment
Suitable for use by professionals for clinical care and research, in educational settings for teaching and training, and by neuroscientists in many fields for reference information
Each of the authors has a unique clinical expertise, and all chapters are co-written
The book provides an up-to-date review of the current neuroscience research and clinical neuropsychology practice with many new references.
New to this Edition:
The new edition features structural and functional neuroimages in a color plate section
The new edition inludes newly developed testing batteries for specific issues such as frontal lobe and executive function evaluation
New e-service development in the homecare sector: beyond implementing a radical technology
Essén, A. & Conrick, M.
(2008)
New possibilities for home nursing with information technology
Magnusson, L., & Hanson, E.
(2003)
Newborns with impairment: Discourses of Hospital Staff
Vehkakoski, Tanja
(2007)
The birth of a baby with an impairment goes against dominant cultural ideals about a happy event. Therefore, the interaction between professionals and parents is particularly important, from the hospital maternity ward to the home. In this article, the author examines both the representations of neonatal impairments constructed by professionals and the consequent subject positions for these babies with impairments. The study is based on interview data collected among 19 staff members of one Finnish county hospital. The author analyzed the data by means of qualitative discourse analysis and concludes that it would be important for health care professionals to provide many-sided elements for parents to consider in the construction of the image of their baby other than traditional tragically and negatively biased cultural interpretations.
Nondirective counseling. Effects of short training and individual characteristics of clients [Akademisk avhandling].
Rautalinko E.
(2004)
Nondirective counseling is to listen, support, and advise, without directing a client's course of action. It has been influenced by humanistic theories in the tradition of Carl Rogers, but techniques used in nondirective counseling are common in many forms of psychological counseling and treatment today. There are, however, few conclusions as to what the results of training nondirective counseling are. The purpose of the present thesis is to examine effects of nondirective counseling training, and to analyze how such effects are moderated by the characteristics of clients. Three quasi-experimental or experimental studies (Paper IIII) are presented. In Paper I, trained and untrained insurance company employees were compared on their Reflective listening (RL; a subskill of nondirective counseling) skills before and after a training program. Training increased RL, and the skills were transferred to authentic settings. Trained employees were, however, not evaluated differently than untrained. In Paper II, psychology students were compared before and after RL training of three time lengths. All training times increased skills equally, but clients disclosed more information to those with longer training, the students remembered the information better, and external judges perceived the therapeutic relationship as better, especially if the judge was socially competent. In Paper III, two nondirective counseling techniques, RL and open-ended questions, were evaluated by judges who differed in social skills and cognitive ability. RL received positive ratings, whereas open-ended questions did not, and the judges' ratings were moderated by their social skills and cognitive ability. In the Discussion, it is proposed that even short training has effects, that trained skills generalize to authentic contexts, but that the usefulness of the examined subskills of nondirective counseling depends on client characteristics such as social skills and cognitive ability.
Nonpharmacologic Management and Treatment Effect of Support and Counseling on Caregivers of Patients With Alzheimer´s Disease
Mittelman, M. S.
(2000)
Nonverbal narratives: Listening to people with severe intellectual disability
Dennis, R.
(2002)
This article describes an exploratory study that examined the perspectives of practitioners who spend much of their working day listening to and in some ways "interpreting" for people with severe intellectual disabilities. On the basis of focus group interviews with 23 professional disability-sector workers, including speech therapists, psychologists, and human service workers, the article reports on the importance of a practitioner's values and experience in successful interactions with individuals who rely on self-developed nonsymbolic communication repertoires. The article includes a discussion of the likelihood of including individuals with severe intellectual disabilities in narrative research.
Nordisk äldreomsorgsforskning. En kunskapsöversikt. TemaNord 2005:508.
Szebehely, M, (red).
(2005)
Normal disruption": South Asian and African/Caribbean relatives caring for an older family member in the UK
Adamson, J. and J. Donovan
(2005)
Normaliseringsprincipen
Nirje, Bengt
(2003)
ormaliseringsprincipen handlar om funktionshindrades rätt till livsvillkor och vardagsmönster som ligger så nära de normala som möjligt. Sedan principen formulerades av Bengt Nirje i slutet av 1960-talet har den haft ett stort inflytande på handikappolitiken både i Sverige och i andra länder. Nirje har under årens lopp i artiklar på engelska presenterat och utvecklat principen. I denna bok presenteras dessa artiklar i uppdaterat skick för första gången på svenska och samlade i ett verk.
Principen utgår från att alla individers jämlikhet med den därav följande etiken som grund under livets gång. Särskilt nyskapande blev Nirjes betoning av utvecklingsstördas rätt till självbestämmande.
Principen är tvärvetenskaplig och kan därför studeras av högskolestuderande inom pedagogik, psykologi, socialpsykologi, kulturantropologi, sociologi samt omsorgsvetenskap. Den kan även vara av intresse för yrkesverksamma samt föräldrar till funktionshindrade.
Normaliseringsprincipen sätts i ett inledande kapitel in i sitt historiska sammanhang av Mårten Söder, som i ett avslutande kapitel även diskuterar dess betydelse för handikappolitik och handikappforskning.
Normaliseringsprincipen [The principle of normalization]
Nirje B.
(2003)
Leisure and distress in caregivers for elderly patients
Losada, A., Perez-Penaranda, A., Rodriguez-Sanchez, E., Gomez-Marcos, M. A., Ballesteros-Rios, C., Ramos-Carrera, I. R., et al.
(2010)
Gender, work, and attitudes
Kotsadam, A.
(2011)
Abstract The thesis consists of four self-contained papers. Paper 1: The long term effect of own and spousal parental leave on mothers' earnings We take advantage of the introduction of a Norwegian parental leave reform in 1993 to identify the causal effect of parental leave on mothers' long-term earnings. The reform raised the total leave period by seven weeks, but reserved four weeks for the father. The reform process was fast, so all mothers were already pregnant at the time of the policy announcement. Applying a regression discontinuity design we find that women who had their last child immediately after the policy change had higher mean yearly earnings from 1995 to 2005 and long-run yearly earnings (in our last year of data in 2005) compared to women who had their last child immediately before the reform. However, the estimate is sensitive to extreme observations, to restrictions regarding eligibility, and to the exclusion of observations within a window of three days before and after the reform. Paper 2: Do laws affect attitudes? An assessment of the Norwegian prostitution law using longitudinal data (Forthcoming in International Review of Law and Economics) The question of whether laws affect attitudes has inspired scholars across many disciplines, but empirical knowledge is sparse. Using longitudinal survey data from Norway and Sweden, collected before and after the implementation of a Norwegian law criminalizing the purchase of sexual services, we assess the short-run effects on attitudes using a difference-indifferences approach. In the general population, the law did not affect moral attitudes toward prostitution. However, in the Norwegian capital, where prostitution was more visible before the reform, the law made people more negative toward buying sex. This supports the claim that proximity and visibility are important factors for the internalization of legal norms. Paper 3: Does informal eldercare impede women's employment? The case of European welfare states (Forthcoming in Feminist Economics) European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work–care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. The effects of informal caregiving seem to be more negative in the Southern European countries, less negative in the Nordic countries, and in between these extremes in the Central European countries included in the study. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the degree of degree of coercion in the caring decision. Paper 4: The employment costs of caregiving in Norway Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender (LOGG) survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states
Genetic and environmental influences on ADHD symptom dimensions of inattention and hyperactivity: A meta-analysis
Nikolas, M., & Burt, S. A.
(2010)
Behavioral genetic investigations have consistently demonstrated large genetic influences for the core symptom dimensions of attention-deficit/hyperactivity disorder (ADHD), namely inattention (INATT) and hyperactivity (HYP). Yet little is known regarding potential similarities and differences in the type of genetic influence (i.e., additive vs. nonadditive) on INATT and HYP. As these symptom dimensions form the basis of the current Diagnostic and Statistical Manual of Mental Disorders subtype classification system, evidence of differential genetic influences would have important implications for research investigating causal mechanisms for ADHD. The current meta-analysis aimed to investigate the nature of etiological influences for INATT and HYP by comparing the type and magnitude of genetic and environmental influences each. A comprehensive literature search yielded 79 twin and adoption studies of INATT and/or HYP. Of these, 13 samples of INATT and 9 samples of HYP were retained for analysis. Results indicated that both dimensions were highly heritable (genetic factors accounted for 71% and 73% of the variance in INATT and HYP, respectively). However, the 2 dimensions were distinct as to the type of genetic influence. Dominant genetic effects were significantly larger for INATT than for HYP, whereas additive genetic effects were larger for HYP than for INATT. Estimates of unique environmental effects were small to moderate and shared environmental effects were negligible for both symptom dimensions. The pattern of results generally persisted across several moderating factors, including gender, age, informant, and measurement method. These findings highlight the need for future studies to disambiguate INATT and HYP when investigating the causal mechanisms, and particularly genetic influences, behind ADHD.
Intergenerational transmission of dating aggression as a function of witnessing only same sex parents vs. opposite sex parents vs. both parents as perpetrators of domestic violence
Jankowski M. K., Leitenberg, H., Henning, K., & Coffey, P.
(1999)
The present study examined the association between witnessing interparental violence as a child, and the risk for perpetrating and being the victim of dating aggression as an adult, in an undergraduate sample. Specifically, this study tested a modeling hypothesis whereby witnessing a same sex parent vs. an opposite sex parent exclusively in the aggressor role would be more highly associated with risk for perpetrating dating aggression. Similarly, observing a same sex parent vs. an opposite sex parent as exclusively a victim of marital aggression would be associated with risk for being a victim of dating aggression. A same sex modeling effect was found for perpetration of dating aggression. Respondents who witnessed only their same sex parent perpetrate physical marital aggression were at increased risk for perpetrating physical dating aggression, whereas respondents who witnessed only their opposite sex parent perpetrate were not. A same sex modeling effect, however, was not found for being a victim of dating aggression. Rather, risk for victimization by dating aggression was associated only with witnessing bidirectional marital violence. Implications of these results, limitations of the present study, and ideas for future research are discussed.
International Classification of Functioning, Disability and Health
WHO
(2001)
The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a classification of health and health-related domains. As the functioning and disability of an individual occurs in a context, ICF also includes a list of environmental factors.
ICF is the WHO framework for measuring health and disability at both individual and population levels. ICF was officially endorsed by all 191 WHO Member States in the Fifty-fourth World Health Assembly on 22 May 2001(resolution WHA 54.21) as the international standard to describe and measure health and disability.
Since 2001, ICF has been demonstrating a broader, more modern view of the concepts of "health" and "disability" through the acknowledgement that every human being may experience some degree of disability in their life through a change in health or in environment. Disability is a universal human experience, sometimes permanent, sometimes transient. It is not something restricted to a small part of the population.
ICF focuses on impact. This creates a foundation and a common framework allowing all conditions to be compared using a common metric - the impact on the functioning of the individual.
Furthermore, ICF looks beyond the idea of a purely medical or biological conceptualization of dysfunction, taking into account the other critical aspects of disability. This allows for the impact of the environment and other contextual factors on the functioning of an individual or a population to be considered, analyzed, and recorded.
International Classification of Functioning, Disability and Health Geneva
WHO
(2001)
Stucki G: International Classification of Functioning, Disability, and Health (ICF): A promising framework and classification for rehabilitation medicine. Am J Phys Med Rehabil 2005;84:733–740.
Internet-based support for rural caregivers of persons with stroke shows promise.
Pierce LL, Steiner V, Govoni AL, Hicks B, Cervantez Thompson TL, Friedemann ML.
(2004)
The purpose of this pilot study was to test the feasibility of providing Internet-based education and support intervention to caregivers living in rural settings, including caregivers' satisfaction with the intervention. A secondary aim was to explore their experience of caring. Nine adult caregivers of persons with stroke were enrolled in this descriptive study from rehabilitation centers in northwestern Ohio and southeastern Michigan. They were given access to the intervention, Caring∼Webe©, for three months. Data were collected from participants' bimonthly interviews, as well as e-mail communications. Procedures were tested and found valid, and caregivers were willing and able to use Caring∼Web. Using Friedemann's framework of systemic organization, a coding system was developed for analyzing the qualitative data on the experience of caring. Five main themes emerged from these data. These findings help expand knowledge about caregivers dealing with stroke.
Interpreting the communication of people with profound and multiple learning difficulties
Porter J, Ouvry C, Morgan M, Downs C.
(2001)
The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Inter-rater Reliability of Activity Limitations by ICF Codes and Qualifiers: ICF Codes Corresponding to FIM
Asakawa Y, Sato Y, Usuda S.
(2010)
[Purpose] This study aimed to evaluate the inter-rater reliability of the evaluation scores of activity limitation in the International Classification of Functioning, Disability and Health (ICF) using the "Criteria for Activities and Participations" proposal. [Subjects] The subjects were 10 patients with cerebrovascular disorders living in a support center for people with disabilities. [Methods] Two physical therapists (PT) classified each evaluation item of the Functional Independence Measure (FIM) into corresponding ICF activity codes. Then, a full-time nurse and a part-time PT scored the activity limitations of each subject and calculated the weighted κ of each evaluated item using a flowchart-type questionnaire for the FIM and the scoring criteria shown in the proposal, "Criteria for Activities and Participations" in ICF. [Results] The range of the weighted κ of each item in FIM was 0.44-1.00, and that of ICF was 0.50-1.00. Our results demonstrate high inter-rater reliability for more than 70% of items scored by both evaluations. [Conclusion] The results of the present study suggest that the ICF scores of activity limitations are sufficiently applicable to clinical practice using the proposal, "Criteria for Activities and Participations".
Intersectional perspectives on family involvement in nursing home care: rethinking relatives' position as a betweenship
Holmgren J, Emami A, Eriksson LE, Eriksson H.
(2014)
This study seeks to understand, in the context of intersectional theory, the
roles of family members in nursing home care. The unique social locus at which
each person sits is the result of the intersection of gender, status, ethnicity
and class; it is situational, shifting with the context of every encounter. A
content analysis of 15 qualitative interviews with relatives of nursing home
residents in Sweden was used to gain a perspective on the relationships between
relatives and residents, relatives and the nursing home as an institution, and
relatives and the nursing home staff. We sought to understand these relationships
in terms of gendered notions of the family and the residents, which are handed
down from generation to generation and thus condition who and how relatives
should be involved in care, and the ways in which relationships change as care
moves from home to nursing home. It requires knowledge and awareness that the
nursing home culture is based on intersectional power structures in order for
relatives to be involved in nursing home care in alternative and individual ways.
Intersectional perspectives on family involvement in nursing home care: rethinking relatives' position as a betweenship.
Holmgren J, Emami A, Eriksson LE, Eriksson H.
(2014)
This study seeks to understand, in the context of intersectional theory, the
roles of family members in nursing home care. The unique social locus at which
each person sits is the result of the intersection of gender, status, ethnicity
and class; it is situational, shifting with the context of every encounter. A
content analysis of 15 qualitative interviews with relatives of nursing home
residents in Sweden was used to gain a perspective on the relationships between
relatives and residents, relatives and the nursing home as an institution, and
relatives and the nursing home staff. We sought to understand these relationships
in terms of gendered notions of the family and the residents, which are handed
down from generation to generation and thus condition who and how relatives
should be involved in care, and the ways in which relationships change as care
moves from home to nursing home. It requires knowledge and awareness that the
nursing home culture is based on intersectional power structures in order for
relatives to be involved in nursing home care in alternative and individual ways.
Intervening With Foster Parents to Enhance Biobehavioral Outcomes Among Infants and Toddlers
DOZIER, M., BICK, J. & BERNARD, K.
(2011)
Children in foster care face a number of challenges that threaten their ability to form attachment relationships with foster parents and to regulate their behavior and biology. The authors describe the Attachment and Biobehavioral Catch-Up (ABC) intervention, an evidence-based intervention aimed at helping foster children develop trusting relationships with foster parents and develop better biological and behavioral regulation. The authors present research that led to the development of the ABC intervention, outcome research of randomized clinical trials, and a case example of a foster parent and child who participated in the ABC intervention. Finally, issues related to the broader system of care that are likely to affect children's adjustment (e.g., foster caregiver commitment and placement stability) are discussed.
Intervention för närstående till personer med demenssjukdom
Andrén, S.
(2006)
Intervention outcomes among HIV-affected families over 18 months
Rotheram-Borus MJ, Rice E, Comulada WS, Best K, Elia C, Peters K, et al.
(2012)
We evaluate the efficacy of a family-based intervention over time among HIV-affected families. Mothers living with HIV (MLH; n = 339) in Los Angeles and their school-aged children were randomized to either an intervention or control condition and followed for 18 months. MLH and their children in the intervention received 16 cognitive-behavioral, small-group sessions designed to help them maintain physical and mental health, parent while ill, address HIV-related stressors, and reduce HIV-transmission behaviors. At recruitment, MLH reported few problem behaviors related to physical health, mental health, or sexual or drug transmission acts. Compared to MLH in the control condition, intervention MLH were significantly more likely to monitor their own CD4 cell counts and their children were more likely to decrease alcohol and drug use. Most MLH and their children had relatively healthy family relationships. Family-based HIV interventions should be limited to MLH who are experiencing substantial problems.
Intervention outcomes among HIV-affected families over 18 months
Rotheram-Borus, M.J., Rice, E., Scott Comulada, W., Best, K., Elia, C., Peters, K., li, L., Green, S., & Valladares, E.
(2012)
Abstract
We evaluate the efficacy of a family-based intervention over time among HIV-affected families. Mothers living with HIV (MLH; n = 339) in Los Angeles and their school-aged children were randomized to either an intervention or control condition and followed for 18 months. MLH and their children in the intervention received 16 cognitive-behavioral, small-group sessions designed to help them maintain physical and mental health, parent while ill, address HIV-related stressors, and reduce HIV-transmission behaviors. At recruitment, MLH reported few problem behaviors related to physical health, mental health, or sexual or drug transmission acts. Compared to MLH in the control condition, intervention MLH were significantly more likely to monitor their own CD4 cell counts and their children were more likely to decrease alcohol and drug use. Most MLH and their children had relatively healthy family relationships. Family-based HIV interventions should be limited to MLH who are experiencing substantial problems.
Intervention studies for caregivers of stroke survivors: a critical review
Visser-Meily A, van Heugten C, Post M, Schepers V, Lindeman E.
(2005)
The objective of this review was to evaluate the effectiveness of different types of intervention programs for caregivers of stroke patients. A systematic search using Medline, PsychINFO, AMED and CINAHL till March 2003 was carried out and 22 studies were identified. Four types of support programs could be studied: providing specialist services, (psycho)education, counselling and social support by peers. Many different outcome domains and a variety of measures were used. Ten studies reported positive results on one or more outcome domains: reduction of depression (two studies) and burden (one), improvement of knowledge on stroke (five), satisfaction with care (one), family functioning (one), quality of life (three), problem solving skills (two), social activities (two), and social support (one). Three studies reported a negative result on caregiver outcome. We could not identify sufficient evidence to confirm the efficacy of interventions but counselling programs (3 out of 4) appear to have the most positive outcome.
Interventions aiming to improve school achievements of children in out-of-home care: a scoping review
Forsman, H. & Vinnerljung, B.
(2012)
The educational underachievement of children in out-of-home care has been known for decades. In this scoping review, we compiled and analyzed – with a narrative approach – evaluated interventions that aimed to improve foster children's school achievements. Despite a comprehensive searching strategy, only eleven relevant studies were found, indicating that little has been done in intervention research to improve educational outcomes for children in public care. Nine out of the eleven interventions reported some positive results. Literacy was improved in most studies, while evaluated attempts to enhance numeracy skills yielded mixed results. Positive results came from a range of different interventions, e.g. tutoring projects and structured individualized support. We conclude that most focused interventions seem to improve foster children's poor academic achievements, but tutoring projects have so far the best empirical support from evaluations with rigorous designs. Also there's a definite need for more intervention research.
Interventions to reduce the burden of caregiving for an adult with dementia: A Meta-analysis
Acton, G. and J. Kang
(2001)
Interventions with video feedback and attachment discussions: Does type of maternal insecurity make a difference?
BAKERMANS-KRANENBURG, M. J., JUFFER, F. & VAN IJZENDOORN, M. H.
(1998)
Parents' insecure representations of attachment are associated with lower parental sensitivity and insecure infant–parent attachment relationships, leading to less optimal conditions for the children's socio-emotional development. Therefore, two types of short-term intervention were implemented in a group of lower middle-class mothers with an insecure representation of attachment as assessed with the Adult Attachment Interview. In one group of mothers, the intervention efforts were directed at promoting maternal sensitivity by means of written information about sensitive parenting and personal video feedback. In the other group, additional discussions about the mothers' early attachment experiences took place, aiming at affecting the mothers' attachment representation. The interventions were implemented during four home visits between the 7th and the 10th month after the baby's birth. Preliminary results on 30 mothers pointed at an intervention effect: Mothers in both intervention groups were more sensitive at 13 months than mothers in a control group, t(28) = −2.3, effect size d = .87, p = .01. Mothers who were classified as insecure dismissing tended to profit most from video feedback, whereas mothers who were classified as insecure preoccupied tended to profit most from video feedback with additional discussions about their childhood attachment experiences, F(1,16) = 1.9, d = .65, p = .19. © 1998 Michigan Association for Infant Mental Health
Interviews with children of persons with a severe mental illness: investigating their everyday situation
Östman, M.
(2008)
Research on children of persons with a severe mental illness focuses predominantly on parents' and others' perceptions. Children of mentally ill parents form a vulnerable group that has not been adequately paid attention to in psychiatric care institutions. Comparatively little is known about the children's recognition of their parents and the everyday situation of these families. The aim of the study was to investigate experiences of their life situation in children 10-18 years of age in a family with a parent with a severe mental illness. Eight children were interviewed concerning their everyday life situation. The interviews were analysed inspired from using thematic analysis. From the analysis of the material emerged aspects concerning the following themes: need for conversation, love for their family, maturity, experience of fear and blame, feelings of loneliness, responsibility and associated stigma. This study highlights the situation experienced by children of severely mentally ill persons who also are parents. The study may be found to be a basis for inspiring structured interventions and treatments programmes including children of the adult patients seeking psychiatric treatment.
Intervjuer med anhörigvårdare i Strömsund kommun. Hösten 2011
Göransson, S.
(2012)
Intimate partner violence and birth outcomes: A systematic review
Boy, A., & Salihu, H. M.
(2004)
Abstract
OBJECTIVE:
There is a lack of comprehensive information on the relationship between domestic physical and emotional violence and pregnancy outcomes. Accordingly, we undertook this systematic review of the literature to examine the evidence on the association between physical and emotional abuse and pregnancy outcomes.
STUDY DESIGN AND METHOD:
A comprehensive literature search was carried out using pertinent key words that would retrieve any research article pertaining to the topic. This was supplemented by cross-referencing of the articles. A total of 296 articles were found; case reports and articles that failed to satisfy the study inclusion criteria were removed and 30 articles were included in the review.
RESULTS:
Overall, adverse pregnancy outcomes, including low birth weight, maternal mortality and infant mortality are significantly more likely among abused than nonabused mothers. Abused pregnant mothers present more often than nonabused mothers with kidney infections, gain less weight during pregnancy, and are more likely to undergo operative delivery. Fetal morbidity, such as low birth weight, preterm delivery, and small size for gestational age are more frequent among abused than nonabused gravidas. The risk for maternal mortality is three times as high for abused mothers. Black abused mothers are 3-4 times as likely to die as their white counterparts. Unmarried victims are also three times as likely to die as married abused mothers. Intimate partner violence is also responsible for increased fetal deaths in affected pregnancies (about 16.0 per 1000).
CONCLUSION:
Intimate partner violence is often a life-threatening event to both the mother and the fetus. This, in addition to the heightened level of feto-maternal morbidity and mortality, represents clear-cut justification for routine systematic screening for the presence of abuse during pregnancy.
Intimate Partner Violence and Children's Memory
Gustafsson, H. C., Coffman, J. L., Harris, L. S., Langley, H. A., Ornstein, P. A., & Cox, M. J.
(2013)
The current study was designed to examine the relation between intimate partner violence (IPV) and children's memory and drew from a socioeconomically and racially diverse sample of children living in and around a midsized southeastern city (n = 140). Mother-reported IPV when the children were 30 months old was a significant predictor of children's short-term, working, and deliberate memory at 60 months of age, even after controlling for the children's sex and race, the families' income-to-needs ratio, the children's expressive vocabulary, and maternal harsh-intrusive parenting behaviors. These findings add to the limited extant literature that finds linkages between IPV and children's cognitive functioning and suggest that living in households in which physical violence is perpetrated among intimate partners may have a negative effect on multiple domains of children's memory development.
Intimate Partner Violence and Preschoolers’ Explicit Memory Functioning
Jouriles, E. N., Brown, A., McDonald, R., Rosenfield, D., Leahy, M., & Silver, C.
(2008)
This research examines whether parents' intimate partner physical violence (IPV) relates to their preschoolers' explicit memory functioning, whether children's symptoms of hyperarousal mediate this relation, and whether mothers' positive parenting moderates this relation. Participants were 69 mothers and their 4- or 5-year-old child (34 girls). Mothers completed measures of IPV, children's hyperarousal symptoms, parent-child aggression, and positive parenting. Measures of explicit memory functioning were administered to preschoolers. As expected, IPV correlated negatively with preschoolers' performance on explicit memory tasks, even after controlling for parent-child aggression and demographic variables related to preschoolers' memory functioning. Preschoolers' hyperarousal symptoms did not mediate the relation between IPV and explicit memory functioning, but mothers' positive parenting moderated this relation. Specifically, the negative relation between IPV and preschoolers' performance on 2 of the 3 explicit memory tasks was weaker when mothers engaged in higher levels of positive parenting. These findings extend research on IPV and children's adjustment difficulties to explicit memory functioning in preschoolers and suggest that mothers can ameliorate the influence of IPV on preschoolers' memory functioning via their parenting.
Getting evidence into practice: ingredients for change
Rycroft-Malone J, Harvey G, Kitson A, McCormack B, Seers K, Titchen A.
(2002)
Mounting pressure is being exerted to ensure that the delivery of care is evidence-based and clinically effective. However, the challenge this presents to practitioners is complex. The authors propose that successful implementation of evidence into practice is a function of three elements: the nature of the evidence; the context in which the change is to take place; and the way the process is managed. A framework has been developed to represent these factors. For those about to embark on implementation work, this article closes by highlighting a number of key questions for consideration, stimulated by the framework.
Getting in touch' with people with severe learning disabilities
Caldwell, P.
(1997)
This article explores innovative and interactive ways of working with people who have severe learning disabilities, special needs and/or challenging behaviour who, despite the efforts of those who support them, are not able to respond to attempts to interact with them. It examines the possibilities of communicating by using people's own behaviours and outlines how these methods of interaction can be developed into a 'language' which people with these disabilities recognize and find motivating. Entering into a person's world in a way that is not confusing or threatening may allow him/her to move from solitary self-stimulation to shared activity. People with these disabilities will then become aware of a world outside their own (sometimes they are aware of this but are unable to make a connection between what they perceive and themselves), and begin to understand their relationship to it. Surprise is an important element as it shifts attention from the inner space to the source of the intervention. A number of examples illustrate a range of person-centred approaches and the variety of disabilities that may be assisted.
Introduktion till counselling i socialt arbete
Larsson, S. and S. Trygged
(2010)
Counselling. Stödsamtal i social arbete. S. Larsson and S. Trygged
Global quality of life in primary caregivers of patients with cancer in palliative phase staying at home.
Grov, E. K., Dahl, A. A., Fosså, S. D., Wahl, A. K., & Moum, T.
(2006)
Global Trends, forced displacement in 2015
UNHCR
(2016)
Global women's health: a spotlight on caregiving
Berg, J. A., & Woods, N. F.
(2009)
Glöm ej dom som glömmer: Studie av stöd och insatser för unga personer med demenssjukdom och deras anhöriga i en kommun i Mellansverige
Strömqvist, Lina
(2008)
Syftet med studien var att ta reda på hur insatser, stöd och samordning var utformat kring unga personer med demenssjukdomar och deras anhöriga i en kommun i Mellansverige. Med unga personer med demenssjukdomar avses de som är yngre än 65 år när de får diagnosen. De här personerna är mitt i livet när de drabbas av en sjukdom som förknippas med äldre människor och åldrande. Livssituationen kan se helt annorlunda ut än för äldre personer som drabbas av sjukdomen, därför bör stödet till dem vara utformat på ett annat sätt. Studien Metoden som användes i studien var kvalitativa intervjuer. Urvalet gjordes genom ett både strategiskt och snöbollsurval för att få en översikt av hur samordning, insatser och stöd var utformat i kommunen. Respondenterna i studien var en kurator inom landstinget, en biståndshandläggare, en LSS-handläggare, en demensspecialiserad undersköterska och en anhörigkonsult på kommunen. Som analysmetod användes Grounded Theory då forskningsmaterialet om unga personer med demenssjukdomar inte var tillräckligt omfattande.
Glömskans spår - Demens från ett anhörigperspektiv
Larsson Mari
(2020)
Boken handlar om min tid som demensanhörig. Den innehåller också råd och tips till anhöriga samt egna skrivna dikter. Mer information om boken finns på min bokblogg www.vingpenna.blogspot.se.
Första upplagan 2009, nytryck 2020
God vård i livets slut. En kunskapsöversikt om vård och omsorg om äldre, underlag från experter
Ternestedt, B.-M.
(2004)
Good Grief: Exploring the Dimensionality of Grief Experiences and Social Work Support
Gordon, T. A.
(2013)
This study explored the dimensionality of grief with a sample (n = 180) of caregivers of deceased loved ones; utilizing a positive grief scale, additional data were collected about perceptions of social worker practice behaviors in end-of-life care. Results revealed the presence of both positive and negative aspects of grief. Supportive social work practice behaviors at the end of life were present at least 52.2% of the time and specific practices were analyzed as to their association with positive or negative grief reactions. Results from this study suggest that grief is a multidimensional process and that social work practice behaviors can support positive aspects of grief with clients in all fields of practice.
Good grieving – an intervention program for grieving children
Heiney, S.P., Dunaway, N.C. & Webster, J.
(1995)
Abstract
PURPOSE/OBJECTIVES:
To describe a program for grieving children including the agenda, activities, and logistics of organizing the program.
DATA SOURCES:
Clinical observations and evaluations from the program; literature review.
DATA SYNTHESIS:
A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support.
CONCLUSIONS:
The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs.
IMPLICATIONS FOR NURSING PRACTICE:
Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.
Good grieving – an intervention program for grieving children
Heiney, S.P., Dunaway, N.C., & Webster, J.
(1995)
Abstract
PURPOSE/OBJECTIVES:
To describe a program for grieving children including the agenda, activities, and logistics of organizing the program.
DATA SOURCES:
Clinical observations and evaluations from the program; literature review.
DATA SYNTHESIS:
A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support.
CONCLUSIONS:
The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs.
IMPLICATIONS FOR NURSING PRACTICE:
Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.
Gôrbra för äldre : En film om gemenskap, tillgänglighet & välfärdsteknologi för ett gôrbra boende
Göteborgs stad
(2012)
Göteborg, Norrköping och Västerås har försöksverksamhet inom Teknik för äldre II , ett regeringsuppdrag på Hjälpmedelsinstitutet. Uppdraget är att stödja utvecklingen av ny teknik och bättre boende för äldre och anhöriga. Göteborgs försöksverksamhet kallas Gôrbra för äldre och pågår 2011–2012. FoU i Väst utvärderar Gôrbra för äldre. I utvärderingen ingår en ekonomisk analys som ett bidrag till en samhällsekonomisk diskussion.
Grandma’s hands: parental perceptions of the importance of grandparents as secondary caregivers in families of children with disabilities
Green, Sara
(2001)
This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive interviews. Findings of the survey indicate that: 1) grandparents are a common source of weekly assistance-significantly more common than other relatives or friends and neighbors; 2) where grandparents participate, the number of other sources of support is also higher; and 3) help from grandparents has a positive, while the number of other sources of help has a negative, relationship to parental ability to maintain a positive emotional outlook and to avoid physical exhaustion. Findings of the interactive interviews suggest that: 1) grandparent participation can promote pride and "normalized attitudes" by helping grandparents to get to know the child with a disability on an intimate basis; 2) when grandparents do not participate, parents may feel the need to manage the information given to and the emotional responses experienced by grandparents who have not had a chance to get know and love the child through frequent, direct contact; and 3) parents are very concerned that if grandparents themselves begin to need help due to increased age and disability, they will not ask for it because of fear that parents are already overburdened by the unusual demands of their parenting roles
Grandmother between work and great grandmother?
Gautun H.
(2006)
Grandparent Support for families of children with Down´s Syndrome
Hastings, Richard, Thomas, Hannah & Delwiche, Nicole
(2002)
Background Although grandparents are recognized as an important source of support for families of children with intellectual and other disabilities, there has been very little research in this area. The aim of the present paper is to present a brief overview of the literature, and to present data from a preliminary study of relationships between parental stress and grandparent support and conflict.
Methods Sixty-one parents of children with Down's syndrome (34 mothers and 27 fathers) completed questionnaires on grandparent support and conflict. Parents also completed the Friedrich Short Form of the Questionnaire on Resources and Stress (QRS) with scoring amended to include a depression sub-scale.
Results The main findings were: (1) grandparent support and conflict were associated with mothers' but not fathers' ratings of stress on the QRS, and (2) both grandparent support and conflict made independent contributions to the prediction of mothers' stress on at least one dimension of the QRS.
Conclusions Practical implications of the results for interventions designed to encourage grandparent support for families are discussed. Issues for further research and methodological problems with the study are also identified
Grief in childhood: fundamentals of treatment in clinical practice
Pearlman, M.Y., D’Angelo Schwalbe, K., & Cloitre, M.
(2010)
Children vary in their response to the death of a loved one. Some children develop relatively few symptoms or problems, while others face significant or prolonged symptoms, such as posttraumatic stress disorder or anxiety. Similarly, children vary in their circumstances and preferences. Thus, clinicians who work with bereaved children must customize interventions to meet the specific needs of each individual child.
This book presents Integrated Grief Therapy for Children — an evidence-based model for treating bereaved children that draws extensively on cognitive–behavioral, family systems, and narrative approaches to therapy. The model shows clinicians how to assess the needs of bereaved children, treat common distressing symptoms (depression, posttraumatic stress disorder, anxiety, and behavioral problems), and address the grief itself while fostering resilience.
Because emotional and behavioral problems following grief are manifested in different ways, the model allows for flexibility based on the age, symptom presentation, and needs of the child. And because the inclusion of a surviving parent or caregiver is critical to working with grieving children, the model involves the parent in the interventions.
With a thorough literature review on bereavement in childhood, extensive case examples and dialogues to illustrate therapeutic techniques, and over 20 activity handouts that therapists can photocopy and use in sessions, this book provides everything needed to treat bereaved children.
Grief in childhood: fundamentals of treatment in clinical practice
Pearlman, M.Y., D’Angelo Schwalbe, K., & Cloitre, M.
(2010)
Children vary in their response to the death of a loved one. Some children develop relatively few symptoms or problems, while others face significant or prolonged symptoms, such as posttraumatic stress disorder or anxiety. Similarly, children vary in their circumstances and preferences. Thus, clinicians who work with bereaved children must customize interventions to meet the specific needs of each individual child.
This book presents Integrated Grief Therapy for Children — an evidence-based model for treating bereaved children that draws extensively on cognitive–behavioral, family systems, and narrative approaches to therapy. The model shows clinicians how to assess the needs of bereaved children, treat common distressing symptoms (depression, posttraumatic stress disorder, anxiety, and behavioral problems), and address the grief itself while fostering resilience.
Because emotional and behavioral problems following grief are manifested in different ways, the model allows for flexibility based on the age, symptom presentation, and needs of the child. And because the inclusion of a surviving parent or caregiver is critical to working with grieving children, the model involves the parent in the interventions.
With a thorough literature review on bereavement in childhood, extensive case examples and dialogues to illustrate therapeutic techniques, and over 20 activity handouts that therapists can photocopy and use in sessions, this book provides everything needed to treat bereaved children.
Grief related to the experiences of being the sibling of a child with cancer
Jenholt Nolbris, M., Enskär, K., & Hellström, AL.
(2013)
Abstract
BACKGROUND:
Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support.
OBJECTIVE:
The aim of this study was to describe siblings' reports of grief related to the experience of having a brother or sister with cancer.
METHODS:
A qualitative descriptive method was chosen based on open-ended interviews with 29 siblings aged 8 to 24 years. Qualitative content analysis was applied to the interview data.
RESULTS:
Four categories of grief were identified: anticipatory grief after receiving information about the cancer diagnosis, grief and concern about the ill sibling's loss of a normal life, grief about being unimportant and forgotten in the family, and grief that continues after the sibling's death as a kind of bond.
CONCLUSION:
Despite variations in age and gender among participating siblings, their thoughts were similar. Grief was experienced differently from the time of the diagnosis onward, in the form of concerns related to the illness and situation of the ill sibling. Grief related to sibling bonds remained after death.
IMPLICATION FOR PRACTICE:
This study recommends offering siblings realistic information about their ill sibling and support for them in their situation from diagnosis and continuously thereafter. To meet the needs of well siblings, it is necessary to ask the siblings about their thoughts and discuss with them their emotions and worries.
Group intervention for children of drug-addicted parents--using expressive techniques
Peleg-Oren N.
(2002)
Children of an addictive parent generally suffer from negative repercussions and constitute "a population at risk," in need of special therapeutic intervention. This article explores the difficulties confronting these children and the group intervention for children aged 8–11, lasting 18 months as a therapeutic intervention to help them. The description includes the group intervention framework, the expressive and non-verbal techniques used, and the rationale as well as the theoretical basis for using these techniques. The unique contribution of this article lies in the demonstration of using expressive group therapy and particularly of non-verbal techniques with children of addicted parents, with abundant examples stemming from the topics dealt with by the group.
Group interventions for children at-risk from family abuse and exposure to violence
Johnston, J.R.
(2003)
This paper describes the rationale, content, and preliminary data on outcome effectiveness of a therapeutic curriculum designed for groups of children from highly conflicted and violent families, implemented in family agency and school settings. Data for 223 children (ages 5–14 years, most of whom were from single-parent, indigent, ethnic minority families) who participated in the study indicate that the majority had been exposed to multiple types of stressful and traumatic events. These include separation and loss of a parent or caretaker, exposure to spousal and child abuse, neighborhood violence, and having a family member in trouble with the law. The absence of a control group makes it difficult to determine to what extent the positive outcomes can be attributed to the group intervention. However, a pre- and post-assessment of the children's behavioral problems and social competence by clinicians, teachers, and parents showed significant improvement in their functioning over a six-month follow-up. Conclusions are drawn as to the basic elements of group interventions that are ecologically and economically.
Group living homes for older people with dementia: The effects on psychological distress of informal caregivers
te Boekhorst, S., Pot, A. M., Depla, M., Smit, D., de Lange, J. & Eefsting, J.
(2008)
Group support during caring and post-caring: The role of carers group
Larkin, M.
(2007)
Group work for bereaved children: a team approach
Beswick, G. & Bean, D.
(1996)
This article provides a review of the current literature relating to child bereavement. The author also describes the setting up, running and evaluation of group work for bereaved children, and examines how these experiences can help to inform future best practice.
Group-based parent training programmes for improving emotional and behavior adjustment in children from birth to three years old
Barlow J, Smailagic N, Ferriter M, Bennett C, Jones H.
(2010)
BACKGROUND:
Emotional and behavioural problems in children are common. Research suggests that parenting has an important role to play in helping children to become well-adjusted, and that the first few months and years are especially important. Parenting programmes may have a role to play in improving the emotional and behavioural adjustment of infants and toddlers. This review is applicable to parents and carers of children up to three years eleven months although some studies included children up to five years old.
OBJECTIVES:
To:a) establish whether group-based parenting programmes are effective in improving the emotional and behavioural adjustment of children three years of age or less (i.e. maximum mean age of 3 years 11 months); b) assess the role of parenting programmes in the primary prevention of emotional and behavioural problems.
SEARCH STRATEGY:
We searched CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, Sociofile, Social Science Citation Index, ASSIA, National Research Register (NRR) and ERIC. The searches were originally run in 2000 and then updated in 2007/8.
SELECTION CRITERIA:
Randomised controlled trials of group-based parenting programmes that had used at least one standardised instrument to measure emotional and behavioural adjustment.
DATA COLLECTION AND ANALYSIS:
The results for each outcome in each study have been presented, with 95% confidence intervals. Where appropriate the results have been combined in a meta-analysis using a random-effects model.
MAIN RESULTS:
Eight studies were included in the review. There were sufficient data from six studies to combine the results in a meta-analysis for parent-reports and from three studies to combine the results for independent assessments of children's behaviour post-intervention. There was in addition, sufficient information from three studies to conduct a meta-analysis of both parent-report and independent follow-up data. Both parent-report (SMD -0.25; CI -0.45 to -0.06), and independent observations (SMD -0.54; CI -0.84 to -0.23) of children's behaviour produce significant results favouring the intervention group post-intervention. A meta-analysis of follow-up data indicates a significant result favouring the intervention group for parent-reports (SMD -0.28; CI -0.51 to -0.04) but a non-significant result favouring the intervention group for independent observations (SMD -0.19; CI -0.42, 0.05).
AUTHORS' CONCLUSIONS:
The findings of this review provide some support for the use of group-based parenting programmes to improve the emotional and behavioural adjustment of children with a maximum mean age of three years eleven months. There is, insufficient evidence to reach firm conclusions regarding the role that such programmes might play in the primary prevention of such problems. There are also limited data available concerning the long-term effectiveness of these programmes. Further research is needed.
Groups for siblings of children who have special needs
Nesa, M. and K. Strohm
(2004)
Growing Up and Growing Old. Ageing and Dependency in the Life Course
Hockey, J., James, A.
(1993)
Ranging across disciplinary boundaries, this book analyzes metaphors of dependency in differing contexts - the body, the family, work and leisure. Combining a robustly critical analysis with breadth of interdisciplinary sweep, Growing Up and Growing Old challenges the stigmatizing role that stereotypes can play in the lives of particular groups of people.
Growing up with parents who have learning difficulties
Booth, W., & Booth, T.
(1998)
For this article we drew on material from a study in which we explored how people who were brought up in a family headed by a parent or parents with learning difficulties managed the transition to adulthood. Using evidence from in-depth interviews, we provided an assessment of how the now-adult children came through what would generally be seen as a risk-filled upbringing. Despite the problems they encountered in their childhood, many of which originated outside the home, most of the informants had maintained a valued relationship with their family and remained close to their mother.
Grundstenar för kommunikation och samspel (filmad föreläsning). Livets möjligheter - för personer med flerfunktionsnedsättning, deras anhöriga och omgivning
Wilder J, editor
(2014)
Gråtens betydelse för patienter och närstående i palliativ hemsjukvård [Lic.].
Rydé, K.
(2007)
AbstraktGråt är vanlig bland patienter och närstående men sällan studerat i palliativ vård. Gråten kan vara ett sätt för patienter och deras närstående att uttrycka sorg och hantera en situation fylld av stress som är orsakad av förluster, många allvarliga symtom och en nära förestående död.Studiernas övergripande syfte var att bidra till en djupare förståelse för vilken betydelse gråten har för patienter och deras närstående i palliativ hemsjukvård: Vad innebär gråten och hur påverkar den de berörda? Bandinspelade intervjuer gjordes med 14 patienter med cancersjukdom och 14 närstående i palliativ hemsjukvård. För att få en djupare förståelse genomfördes arbetet med ett hermeneutiskt metodologiskt angreppssätt enligt Gadamer.Resultatet visade att patienterna (studie I) beskrev olika dimensioner och funktioner av gråt; Intensiv och förtvivlad gråt för att ge uttryck för akuta behov: Stilla och sorgsen gråt som medvetet förlöste känslor; Tyst och tårlös gråt som en skyddande strategi. Som en tolkning av helheten sågs patienternas gråt (studie I) som ett sätt att uttrycka en inre känslomässig kraft, framkallad av olika faktorer, som orsakade förändringar i den nuvarande inre balansen. Genom att gråta öppet men också inombords skapades eller upprätthölls balansen. Studie (II) visade att de närstående upplevde att gråten var beroende av olika förutsättningar som attityder och mod, tid, trygghet, ärliga och tillitsfulla relationer. Omskakande och oroande händelser, utmattning i brist på egen tid och sympati från andra var omständigheter som utlöste gråten. De närstående försökte göra det bästa möjliga för patienten genom att anpassa eller dölja gråten, allt för att underlätta bördan och skapa en positiv motvikt till lidande och sorg. Tolkningen av helheten (studie II); närståendes gråt kunde vara ett uttryck för att dela något tillsammans för gemenskap, tröst och stöd eller att söka sig till ensamhet för enskildhet och återhämtning.Sammanfattningsvis kan gråten ses som en copingstrategi eftersom den reducerar spänningar och skapar befrielse, upprätthåller balans, ger tröst, ny energi och tillfällen för enskildhet. Det är ett sätt att uttrycka lidande men på samma gång kräver gråten energi och ger känslor av skam.En viktig del i professionens arbete bör därför vara att tillåta gråten, lyssna, vara närvarande, uppmuntra uttryck av känslor men också ge utrymme för enskildhet. Läkaren, sjuksköterskan och andra i teamet kan lindra patientens och närståendes känslor av skam och sårbarhet genom att bekräfta, legitimera olika uttryck för gråt och därmed skapa en tolerant, säker och trygg omgivning.
Guide för effektutvärdering av sociala investeringsprojekt. P-synk psykisk hälsa för barn och unga
Sveriges Kommuner och Landsting
(2014)
Guilt and shame in end-of-life care : the next-of-kin´s perspective
Werkander Harstäde, C.
(2012)
Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.
Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.
Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.
Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.
Guilt and shame in end-of-life care : the next-of-kin´s perspective
Werkander Harstäde, C.
(2012)
Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.
Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.
Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.
Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.
Guilt and shame in end-of-life-care – the next-of-kin’s perspective
Harstäde Werkander, Carina
(2012)
Akademisk avhandling
Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.
Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.
Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.
Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.
Gör jag något fel? - Stöd och utbildning för anhörigvårdare till äldre utlandsfödda
Andersson, K.
(2005)
Gör jag något fel? : Stöd och utbildning för anhörigvårdare till äldre utlandsfödda.
Andersson, K.
(2005)
Haja ADHD : Om nuets förbannelse, hjärnans skärmsläckare och vikten av dagdrömmeri
Björn Roslund
(2018)
Haja adhd tar med dig på en spännande och initierad djupdykning i hur det är vid adhd och inte minst varför.
Varför har personer med adhd så svårt för att njuta av framtida segrar, och hur hänger det ihop med avhopp från utbildningar och drogers lockande låga?
Är det psykedeliska drömspel som hjärnans skärmsläckare (default mode network) bjuder oss på bara ett ointressant bakgrundsbrus, eller rent av huvudpersonen i kunskapen om vad adhd egentligen är?
Hur kan jammande jazzmusiker skapa förståelse för hur grupper av hjärnregioner spelar tillsammans, men också duckar för varandra?
Hur kan adhd vara så starkt kopplat till risker, eller rent av undergångsfaktorer, men samtidigt ha psykiatrins bästa prognos?
Med energi och lätthet förmedlar psykiatern Björn Roslund avancerad kunskap som gör skillnad i hur vi ser på och kan leva med adhd. Boken är skriven för dig som själv har adhd, anhöriga och för alla nyfikna som vill lära sig mer.
Han är god som saltlakrits: om att få ett syskon med cystisk fibros
Ranung, Moa
(2019)
Barn och ungdom
Lillebror har hamsterkinder och stjärnögon. Han har också en ovanlig sjukdom som heter cystisk fibros. Den syns inte på honom men han kommer alltid att ha den. Ibland pussar jag honom på pannan. Då smakar det jättemycket salt. Han är god som saltlakrits. Boken är för barn eller syskon till barn med cystisk fibros, eller andra som har ett barn med cystisk fibros i sin närhet. På ett pedagogiskt och lekfullt sätt förklaras sjukdomen genom en storebrors ögon
Handbok - översikt av instrument att använda inom kommunens äldreomsorg, i Socialstyrelsen, Rapporter från anhörig 300-konferenser våren 2001
Rönnerfält, M. and M. Parker
(2001)
Handbok om sorg.
Grimby, A., & Johansson, Å. K.
(2009)
Handbook for the study of parental acceptance and rejection
Rohner R.
(1991)
A Handbook containing description of the theoretical basis for study of parental acceptance and rejection, interpersonal relationships, and mental health outcomes related to these relationships. Measures to assess parent-child relations, intimate partner relations, behavioral control, discipline, parenting education, and other issues are included in the Fourth Edition of the Handbook.
Handbook of bereavement research: consequences, coping and care
Hansson, R.O., Stroebe, W. & Schut, H.
(2001)
New research continues to challenge our assumptions about the fundamental nature and course of grief: its roots in our biology, our emotions, our cognitions, and our social interactions. The Handbook of Bereavement Research provides a broad view of diverse contemporary approaches to bereavement, examining both normal adaptation and complicated manifestations of grief.
In this volume, leading interdisciplinary scholars focus on three important themes in bereavement research: consequences, coping and care. In exploring the consequences of bereavement, authors examine developmental factors that influence grief both for the individual and the family at different phases of the life cycle. In exploring coping, they describe exciting new empirical studies about how people can and do cope with grief, without professional intervention. Until recently, intervention for the bereaved has not been scientifically guided and has become the subject of challenging differences of opinion and approach.
Chapters in the care section of the volume critically examine interventions to date and provide guidance for assessment and more empirically guided treatment strategies. The Handbook provides an up-to-date comprehensive review of scientific knowledge about bereavement in an authoritative yet accessible way that will be essential reading for researchers, practitioners, and health care professionals in the 21st century.
Handikapp i skolan – skolans möte med funktionshinder från folkskolan till nutid. Kunskapsöversikt
Skolverket
(2005)
Handikappreformen. Årsrapport 1994
Socialstyrelsen
(1994)
Socialstyrelsen följer upp och utvärderar 1994:11.
Handlingsplan för att bekämpa mäns våld mot kvinnor, hedersrelaterat våld och förtryck samt våld i samkönade relationer
Regeringen
(2007)
Regeringens skrivelse 2007/08:39.
Handlingsplan för stöd till anhöriga : Antagen av Individ- och familjenämnden Nämnden för funktionshindrade Äldrenämnden november 2012
Västerås stad
(2012)
Handlingsplanen är en del i individ- och familjenämnden, nämndens för funktionshindrade och äldrenämndens verksamhetsplanering för att erbjuda stöd som underlättar för de personer som vårdar eller stödjer en närstående
Handläggning av LSS-frågor. Fjärde upplagan
Sjöberg, Ulf
(2010)
Jag är hans livslina! : makars upplevelser av delaktighet i omvårdnaden på sjukhem
Kvarnström, L.
(2004)
Jag är med! Om personlig assistans och barns delaktighet i familjeaktiviteter.
Wilder J, Axelsson AK.
(2013)
Boken handlar om att underlätta möjligheterna till delaktighet i familjens vardagsliv för barn och ungdomar som har omfattande funktionsnedsättningar. Boken bygger på erfarenheter och tankar från föräldrar till barn med personlig assistans samt deras personliga assistenter. Förhoppningen är att deras tips och idéer ska bidra till upptäckten av nya situationer och samspelsmöjligheter i vardagen som man kanske inte riktigt fått syn på än.
Boken erbjuder fördjupning om delaktighet, barns lärande och utveckling i familjen och konkreta tips om hur man kan arbeta för att underlätta barns delaktighet. Boken kan användas som en huvudbok för samtal om hur vardagslivet kan gestalta sig när barn har personlig assistans.
Boken riktar sig till föräldrar, personliga assistenter, anhöriga och personer som arbetar med barn och ungdomar som har omfattande funktionsnedsättningar. Författare är Jenny Wilder, forskare vid högskolan i Jönköping och forskare/ möjliggörare på Nationellt kompetenscentrum anhöriga (Nka), Anna Karin Axelsson, doktorand vid högskolan i Jönköping och Maggan Carlsson, handledare på Föreningen JAG.
Jag är också viktig. Att växa upp med en familjemedlem som är sjuk eller funktionshindrad
Sundsröm, Elina
(2012)
- Jag skrev den här boken för att det är så viktigt för anhöriga barn att få plats, få stöd i andra och veta att de får känna alla känslor som ibland upplevs som »förbjudna« när man lever med en familjemedlem med funktionshinder eller sjukdom. Det hade jag behövt när jag var barn, hade en mamma som blivit förlamad och rullstolsburen och vi hade assistenter som gjorde det svårt att ha en privat familjesituation.
Elina Sundström är frilansjournalist och utbildar sig till vetenskapsjournalist. Hon är även utbildad ayurvedisk massageterapeut samt har skrivit Engagemangsguiden: en handbok om ideellt engagemang och volontärarbete som gavs ut av Rädda Barnens Ungdomsförbund år 2009.
Boken är för dig som arbetar inom hälso- och sjukvård, barnomsorg eller på annat sätt är i kontakt med barn och unga. Den ger dig kunskap, inspiration och verktyg för att ge unga anhöriga stöd, råd och information.
Den är också för dig som själv är ung anhörig, och innehåller särskilda reflektions- och diskussionspunkter riktade till dig.
Jag är också viktig. Om att vara ung anhörig.
Elina Sundström
(2012)
Att växa upp som barn till en anhörig som är sjuk eller har ett funktionshinder innebär ofta påfrestningar som situationen i familjen för med sig. Alla familjer är olika, men för de unga anhöriga finns det ofta gemensamma erfarenheter. Dessa barn och unga kan behöva stöd och uppmärksamhet.
Unga anhöriga tar ofta på sig ett stort ansvar i sin familj. Då kan det finnas behov av bland annat praktisk hjälp i hemmet, men också av att få prata om de egna känslorna. Men ett barn med en sjuk eller funktionshindrad familjemedlem behöver inte nödvändigtvis må dåligt, och man vill ofta inte bli särbehandlad. Även om situationen i familjen kan föra med sig besvärligheter, kan den också föra samman familjen och vara en källa till styrka. I boken ser vi exempel på olika reaktioner och vägval.
Jag är också viktig innehåller intervjuer med professionella, unga anhörigas berättelser - några berättar själva, andra har blivit intervjuade - samt diskussionsunderlag och frågor för vidare reflektion. I boken finns även litteraturförslag och en organisationsförteckning.
Jag. Har. Inga. Ord. Kvar.
Anna Bergfors
(2020)
Denna prosasamling föddes ur mitt behov av tröst.
Mitt behov av att sätta ord på mina känslor utifrån min vuxnes sons missbruk.
Orden tröstar mig och jag hoppas att mina ord även ska ge dig tröst.
Med dessa ord vill jag att du ska förstå att du som anhörig inte är ensam och det finns inget rätt eller fel i hur vi känner och vad vi känner.
Din anhöriges missbruk handlar inte om dig. Även om det såklart påverkar dig och det vi anhöriga måste göra för att leva ett anständigt liv är att förhålla oss till detta, att hitta strategier som funkar för oss.
Vi kommer använda olika strategier men Du har rätt att leva ditt liv som du önskar, du har rätt att inneha huvudrollen i ditt liv.
Denna prosasamling hjälper inte min son ur sitt missbruk men den hjälper mig att andas.
Julie-Om att växa upp med en förälder som inte räcker till.
Gunilla O. Wahlström
(2006)
En bok som har romanens form men som bygger på verkliga händelser och ger en inblick i hur barn kan ha det idag. Julie växer upp med en psykiskt sjuk mamma.Boken bygger på autentiska händelser som några personer valt att berätta om och beskriver på ett bra sätt hur det kan vara att växa upp med en förälder som är psykiskt sjuk.
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability
Redmond, B., & Richardson, V.
(2003)
Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.
Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.
Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.
Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.
Just Like Any Other Family? Everyday Life Experiences of Mothers of Adults with Severe Mental Illness in Sweden
Piuva K, Brodin H
(2020)
Abstract
This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers' experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers' experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.
Just Say No: Sequential Parent Management Training and Cognitive-Behavioral Therapy for a Child With Comorbid Disruptive Behavior and Obsessive Compulsive Disorder
Lehmkuhl HD, Storch EA, Rahman O, Freeman J, Geffken GR, Murphy TK
(2009)
Jämställd socialtjänst? Könsperspektiv på socialtjänsten
Socialstyrelsen
(2004)
Kan anhöriga samarbeta med ogin offentlig omsorg?
Sundström, G.
(2015)
Eventuellt stöd till anhöriga blir en kommunal fråga och tidigare fanns, med stor lokal variation och skönsmässighet, många anhörigvårdare formellt anställda som vårdbiträden ("anhörigsamariter"), en billig lösning för kommunen och välkommet för de anhöriga. Numera nästan avskaffat, skriver Gerdt Sundström här i en debatterande artikel om anhörigvårdare.
Kartläggning av föräldrastödsprogram
FoU Välfärd U.
(2010)
Kartläggning av insatser för barn och ungdomar i risksituationer 2011 - återredovisning av ett regeringsuppdrag
Statens folkhälsoinstitut
(2011)
Kategorisering av barn i förskoleåldern – styrning och administrativa processer
Lutz, Kristian
(2009)
The present thesis investigates, analyses and critically discusses the manner in which children with special needs are categorised in the Swedish preschool. The emergence of the category and its construction depends on a number of truths concerning children, related to historical and cultural processes in society. A main focus of the thesis is to investigate how legitimacy is established for the practice of defining deviance among preschoolers, and analyse the knowledge and rationalities that prevail in discursive practice. As part of this, the ways of defining children with special needs as a group are clarified, as well as the administrative procedures for handling their cases throughout the organisation. The study combines two strands within discourse analysis: classical discourse analysis with origins in Foucaults work and critical disourse analysis (CDA). The concept governmentality was used to make an analytical matrix, adapted to prescool practices. Data has been collected in a disadvantaged district belonging to the conurbation of a Swedish major city. Empirical material includes recording of an administrative meeting, application documents, interviews and national policy documents. The study shows that the categorisation have different effects and functions in different contexts. Implemental perspective: The practice of development evaluation of preschoolers has increased the written documentation, often based on techniques originating in compulsory school. These techniques are frequently ill adapted to the curriculum of the Swedish preschool, which emphasise the competent child and clearly encourages the child's agency in preschool activities. Evaluation techniques also play the role of an incentive driving towards increasing individualisation. Educators tend to distance themselves from generalising concepts, and often assume a relational standpoint to defining deviance in children, but adapt to techniques that require a more individually based practice, which places the problems with the child. When parents consent to submit application documents, power is transformed to a range of professional actors, and a client-expert relationship is established. Administrative perspective: On the management level, the child primarily is subject to an economical rationality, and is expected to fit into existing preschool activities. The empirical material of this thesis does not display the inclusive perspective which occupies such a prominent position in special education discussions concerning compulsory school. The administrative conversation observed in the study was characterised by a quantitative approach, concerning resources for children who are considered deviant. Discussions at the meeting did not concern any aspect of the quality of the support offered, and the relationship between children and educators was reduced to a number of resouce hours per child. Societal (professional) perspectives: In an analysis of how resources for children with special needs are allocated in the city district, results will depend on which type of knowledge and rationalities are judged to be legitimate. Children who received a diagnosis delivered by a physician, or who are in the course of being investigated at the habilitation centre, obtain the largest support measures. A pattern supported by national policy documents, who constitute a steering mechanism towards implementation in educational establishments. Development evaluations in preschool can be seen as a step in Foucaults term psycomplex , where psychology is manifested in the institutions dealing with preschool children and their activities. The close historical link between pedagogy and developmental psychology, combined with a general development in society towards giving the individual perspective a central position, may contribute to the dominance of psychiatric assesments in explaining deviance among preschoolers. - See more at: http://www.skolporten.se/forskning/avhandling/kategoriseringar-av-barn-i-forskolealdern-styrning-administrativa-processer/#sthash.qpaeHiJ3.dpuf
KBT inom barn och ungdomspsykiatrin
Öst L-G.
(2010)
Kognitiv beteendeterapi (KBT) är en alltmer efterfrågad behandlingsform. Boken beskriver hur KBT kan tillämpas vid en rad olika psykiatriska diagnoser: separationsångest och paniksyndrom, generaliserat ångestsyndrom, specifi ka fobier, social fobi, tvångssyndrom, depression, beteendestörning och trotssyndrom, ADHD, ätstörningar, tics och Tourettes syndrom samt autism och självskadande beteende. Tillstånden beskrivs utifrån gällande diagnostiska kriterier, därefter visas hur KBT-modellen och beteendeanalysen kan se ut för respektive tillstånd och hur behandlingen kan läggas upp. Till de olika diagnoserna finns kliniska fallvinjetter. Boken avslutas med en översikt av det empiriska stödet för KBT vid de olika psykiska störningarna hos barn och ungdomar. Boken är avsedd som kursbok för all grundutbildning inom psykoterapi med KBT-inriktning. Den är också lämpad för professionellt verksamma behandlare.
Key worker services for disabled children: the views of parents
Greco, V., Sloper, P., Webb, R., & Beecham, J.
(2007)
This study reports the findings from 68 interviews with parents of disabled children who are users of seven key worker schemes in England and Wales. The interviews which lasted for one hour each, were tape-recorded, transcribed and analysed according to both a priori and emerging themes. The findings from this study have implications for policy and practice, for example, the necessity of protected time for key workers, the necessity of conveying clear information about the key worker's role, the importance of access to training and information for the key worker, the need for key workers to be proactive, and for their involvement in care plan and review meetings.
Health and care in an enlarged Europe
Alber, J. & Köhler, U.
(2004)
Health and Care in an Enlarged Europe.
Alber J, Köhler U.
(2004)
Examining quality of life in 28 European countries, including the acceding and candidate countries as well as the current Member States of the EU, this report explores how Europeans perceive their health, to what extent they display healthy and unhealthy lifestyles, how easily they can access their national health care system and how satisfied they are with its performance.The analysis is based on data from the European Commission's Eurobarometer survey carried out in the acceding and candidate countries in Spring 2002 and standard EU 15 Eurobarometers. A summary of this report is also available
Health and consumtion of health care and social service among old migrants in Sweden
Ahlin B, Albertsson M, Ekberg J, Hjelm K.
(2005)
Health and daily living form, manual (2nd ed).
Moos R, Cronkite C, Finney JW.
(1990)
Health and well-being among 70-years old migrants living in Sweden - results from the H 70 gerontological and geriatric population studies in Göteborg
Silviera E, Skoog I, Sundh V, Allebeck P, Steen B.
(2002)
Health and wellbeing in informal caregivers and non-caregivers: a comparative cross-sectional study of the Swedish general population
Berglund E, Lytsy P, Westerling R
(2015)
BACKGROUND: Informal caregiving by relatives is a great resource for individuals
as well as for society, but the caregiving role is associated with health
problems for the caregiver. This study aimed to compare caregivers' self-rated
health, number of recent days with poor health and psychological wellbeing with
that of non-caregivers in a general Swedish population.
METHODS: From 2004 to 2013, 90,845 Swedish people completed a postal
questionnaire about their health, number of recent days with poor health during
last month, psychological wellbeing and if they were performing caregiving or
not. Descriptive statistics, chi-square analysis, ANOVA, logistic regressions and
negative binomial regression models were used to investigate associations between
being a caregiver or not and health and wellbeing. Negative binomial regression
was used to assess the relation between caregiver status and recent days with
poor health or functioning.
RESULTS: Eleven percent reported having a caregiving role. Caregivers reported
poorer self-rated health compared to non-caregivers, also in adjusted models;
odds ratio (OR): 1.07 with a 95% confidence interval (CI): 1.01-1.13. Caregivers
also reported lower psychological wellbeing compared to non-caregivers; OR: 1.22,
CI: 1.15-1.30. Caregiving status was associated with more recent days with poor
physical health and more recent days with poor mental health.
CONCLUSIONS: This study suggests that caregivers have worse perceptions in
self-rated health and psychological wellbeing compared with non-caregivers,
indicating that the role of caregiver is adversely associated with health. This
association also appears in terms of reporting days of poor health in the last
month. The underlying mechanism of these associations, including the potential
detrimental health effects of being a caregiver, needs to be investigated in
longitudinal studies.
Health at a glance 2011. OECD indicators
OECD
(2011)
This second edition of Government at a Glance almost doubles the number of available indicators of OECD governments' performance, to nearly 60.
The indicators compare the political and institutional frameworks of government across OECD countries as well as government revenues and expenditures, employment, and compensation.
This publication provides evidence for policy makers by measuring the performance of governments in a comparative perspective. This also allows countries to benchmark their performance against other countries.
There are also indicators describing government policies and practices on integrity, e-government and open government, and introduce several composite indexes summarising key aspects of public management practices in human resources management, budgeting, procurement, and regulatory management.
Health Behaviors Among Baby Boomer Informal Caregivers
Hoffman GJ, Lee J, Mendez-Luck CA.
(2012)
Purpose of the Study: This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal caregivers and 12,941 non-caregivers. Logistic regression models were estimated separately for four individual health-risk behaviors -- smoking, sedentary behavior, and regular soda and fast-food consumption -- as well as a global health-risk measure. Results: Controlling for psychological distress and personal characteristics and social resources such as age, gender, income and education, work and marital status, and neighborhood safety, caregivers had greater odds than non-caregivers of overall negative health behavior and of smoking and regular soda and fast-food consumption. We did not observe significant differences in odds of negative behavior related to stress for spousal caregivers and caregivers in the role for longer periods of time or those providing more hours of weekly care compared with other caregivers. Implications: Our study found evidence that Baby Boomer caregivers engage in poor health behaviors that are associated with exposure to caregiving. Baby Boomer caregivers may be at risk for certain behavioral factors that are associated with disability and chronic illness.
Health Care Experiences and Beliefs of Eldery Finnish Immigrants in Sweden
Heikkilä, K. and S. Ekman
(2000)
Kommunernas anhörigstöd : Utvecklingsläget 2006
Socialstyrelsen
(2007)
Kommunernas anhörigstöd : Utvecklingsläget 2006
Socialstyrelsen
(2007)
Kommunernas anhörigstöd : Utvecklingsläget 2007
Socialstyrelsen
(2008)
Kommunernas anhörigstöd. Slutrapport
Socialstyrelsen
(2009)
In pursuit of QALY weights for relatives: empirical estimates in relatives caring for older people
Davidson, T., Krevers, B. & Levin L. A.
(2008)
In Their Own Words: Improving Services and Hopefulness for Families Dealing with BPD
Buteau, E., Dawkins, K., & Hoffman, P. D.
(2008)
The impact of borderline personality disorder on family members of persons with BPD is articulated best by family members themselves. Despite an increase in research demonstrating more hopeful outcomes for the diagnosis, many mental health professionals remain unaware of recent advances in BPD treatments and therapies. This lack of awareness has dramatic consequences not only for patients, but for their families as well. This chapter describes the personal experiences of 12 family members with relatives with BPD. Expressed in one-hour semi-structured interviews, the family members' individual accounts centered on five key areas of their lives with their ill relative: (1) difficulty accessing current evidence-based knowledge about BPD and treatments; (2) a stigmatizing health care system; (3) prolonged hopelessness; (4) shrinking social networks; and (5) financial burdens. To improve the quality of services available to family members affected by BPD, social workers must educate themselves about the availability of professionals trained in BPD, BPD-specific treatment options, and BPD information resources. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580
Incidence and costs of accidents among attention-deficit/hyperactivity disorder patients
Swensen, A., Birnbaum, H. G., Ben Hamadi, R., Greenberg, P., Cremieux, P., & Secnik, K.
(2004)
PURPOSE:
The purpose is to analyze the incidence and costs of accidents among Attention-Deficit/Hyperactivity Disorder (ADHD) patients.
METHODS:
The analysis relied on administrative medical, pharmaceutical, and disability claims for a national manufacturer's employees, spouses, dependents, and retirees (n > 100,000). Accidental injuries were identified using ICD-9 codes for injuries or poisoning treatment. ADHD sample consists of individuals with at least one claim for ADHD during 1996-98 (NADHD = 1308), which was compared with a matched control sample. In addition to descriptive statistics, multivariate analysis involving logistic regression was used to model the probability of having an accident claim in 1998. This probability was estimated for the whole population, for adults alone, for children (under age 12 years), and for adolescents (age 12-18 years). We also estimated a generalized estimation equation (GEE) model to account for the possibility of multiple accident claims for a single patient.
RESULTS:
ADHD patients had a greater probability of having at least one accident claim than their controls for children (28% vs. 18%), adolescents (32% vs. 23%), and adults (38% vs. 18%). Although ADHD patients' costs were greater than their controls for adults ($483 vs. $146), there was no difference for children or adolescents. However, among patients with accident claims, the average number of accident claims was similar for both groups (3.6 vs. 3.5) and costs were not statistically different. The multivariate analysis confirms this utilization pattern: the odds of having an accident for ADHD patients were 1.7 times greater than for controls.
CONCLUSIONS:
ADHD was a significant predictor of having an accident claim. However, for people with an accident claim, ADHD patients and controls had a similar number of accident claims and costs.
Inclusive education for high school students with severe intellectual disabilities: Supporting communication
Downing, J. E.
(2005)
This article provides a summary of different strategies used to support the complex communication needs of high school students with severe intellectual disabilities and additional impairments who are included in general education classrooms. The premise of this paper is that students with severe cognitive disabilities benefit from inclusive educational opportunities at the high school level and can acquire critical communication skills, given the necessary support. High school students typically communicate for a variety of purposes and use a variety of different modes of communication. This variety in purpose and mode extends to students who do not use speech and have other severe disabilities. The role that peers can play in the development of communication for high school students is described, as well as the need to critically evaluate the learning environment in order to identify communication opportunities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Increased Risks of Heart Disease and Stroke Among Spousal Caregivers of Cancer Patients
Jianguang, J., Zöller, B., Sundquist, K., & Sundquist, J.
(2012)
Background—Spousal caregivers of cancer patients suffer psychological and physical burdens that may affect their risk of subsequently developing coronary heart disease and stroke.
Methods and Results—Cancer patients were identified in the Swedish Cancer Registry, and information on their spouses was retrieved from the Swedish Multi-Generation Register. Follow-up of caregivers was performed from the date of the first diagnosis of cancer in their spouses through 2008. Standardized incidence ratios were calculated for spousal caregivers of cancer patients compared with those without an affected spouse. After the cancer diagnosis in wives, the risks of coronary heart disease, ischemic stroke, and hemorrhagic stroke in husbands were 1.13 (95% confidence interval [CI], 1.10–1.16), 1.24 (95% CI, 1.21–1.27), and 1.25 (95% CI, 1.18–1.32), respectively. The corresponding risks in wives with an affected husband were 1.13 (95% CI, 1.10–1.16), 1.29 (95% CI, 1.26–1.32), and 1.27 (95% CI, 1.19–1.34). The increases were consistent over time and were more pronounced if the spouse was affected by a cancer with a high mortality rate, such as pancreatic and lung cancers.
Conclusions—Spousal caregivers of cancer patients have increased risks of coronary heart disease and stroke that persist over time. Clinical attention should be paid to spousal caregivers, especially those caring for cancer patients with high mortality rates.
Fou-cirkel för utveckling av anhörigstöd erfarenheter från ett länsövergripande projekt (FoU-rapport).
Winqvist, M., & Lerman, B.
(2007)
Framgångsrika preventionsprogram för barn och unga : en forskningsöversikt
Ferrer-Wreder L, Andershed A-K.
(2012)
Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.
Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home – study protocol for a web-based intervention
Alvariza, Anette ; Häger-Tibell, Louise ; Holm, Maja ; Steineck, Gunnar ; Kreicbergs, Ulrika
(2020)
Abstract
Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
Incremental patterns in the amount of informal and formal care among non-demented and demented elderly persons results from a 3-year follow-up population-based study
Wimo A, Sjölund B, Sköldunger A, Johansson L, Nordberg G, von Strauss E.
(2011)
Individualisering, utveckling och utvärdering av anhörigstöd. Inspirationsmaterial till kunskapsöversikt nr 2010:2
Svensson Jan-Olof
(2010)
Inspirationsmaterial som vänder sig till dig som vill få inspiration kring frågor om individualisering av anhörigstödet. Det bygger dels på kunskapsöversikten med samma namn, samt de frågor och diskussioner från det lärande nätverket inom "Individualisering, utveckling och utvärdering" perioden 2008 och 2009.
Individualisering, utvärdering och utveckling av anhörigstöd
Winqvist, Marianne
(2010)
Ett av Nationellt kompetenscentrum Anhörigas (NKA) prioriterade områ-
den är Individualisering, utvärdering och utveckling av anhörigstöd. Syftet
med denna kunskapsöversikt är att utifrån en litteraturgenomgång beskriva
hur anhörigstöd har utvecklats och vad forskning och utvärderingar av anhörigstöd
har givit för resultat med fokus speciellt på anhörigstödets anpassning
till anhörigas olika förutsättningar.
Frågeställningar som studeras är:
• Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
• Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
• Hur ser anhörigas behov av stöd ut?
• Vad har utvärderingar av olika former av anhörigstöd givit för resultat
när det gäller anpassning till individuella behov och situationer.
Kunskapsöversikten bygger på publicerade forskningsresultat, FoUrapporter,
utredningar och offentliga skrifter från tidsperioden år 2000 till
mitten av år 2008. Endast svenska förhållanden studeras.
Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar
av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig
300 och framåt. Statens satsningar har varit stora och anhörigstödet
har utvecklats starkt, men mycket återstår att göra inom området. Kunskap
som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet
och om anhörigstödet motsvarar anhörigas behov.
För att problematisera vad det är för olika slags behov och situationer
som anhörigstödet skall möta görs en genomgång av den kunskap som
finns om anhörigskapets olika förutsättningar. Teman som behandlas är
olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform,
sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vårdoch
omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns
betydelse, socialt stöd och coping. Resultatet av denna genomgång
visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer
och att detta ställer krav på anhörigstödet om det skall skräddarsys eller
individualiseras.
Hur det är att vara anhörig och anhörigvårdare, speciellt till personer med
demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhöri-10
gas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman
samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma
samtidigt och kanske till och med förutsätter varandra. Återkommande
inom forskningen beskrivs känslomässiga och existentiella upplevelserna
som svåra, tillsammans med bundenhet och fysisk trötthet. Studier
visar även att anhöriga kan skatta sina liv i positiva termer och att det är
tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna
stödbehov, men insatser som efterfrågas är avlösning (flexibel och med kort
varsel), information och kunskap, någon att tala med, att bli bekräftad, uppskattad
och sedd samt ekonomisk ersättning. Att vara anhörig i samband
med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon
som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets
slutskede kan innebära speciella krav och förväntningar. En presentation ges
därför av den kunskap som vi har av att vara anhörig i dessa specifika situationer.
Genomgången avslutas med en redovisning av de utvärderingar som har
gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård
och växelvård, dagverksamhet, kombination av dag- och nattavlösning och
avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av
personal, anhörigcentraler och träffpunkter, må bra-aktiviteter, enskilda
samtal samt övrigt stöd. De erfarenheter som har dragits av att använda
instrumentet COAT för planering, uppföljning och utvärdering av stöd till
anhöriga redovisas samt resultaten från de två svenska kontrollerade interventionsstudierna
om anhörigstöd som finns där resultaten visar att utbildning
och stödgrupper för anhöriga har positiva effekter.
Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget
inom området eftersom dokumentation och systematiska uppföljningar
av befintliga verksamheter när det gäller innehåll och kvalitet,
vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning
saknas. Området är också behäftat med en del metodologiska svårigheter
som bland annat medför att det är svårt att jämföra resultaten mellan olika
studier. Mest kunskap har vi om sammanboende anhörigas situation, oftast
makar och makor och dessutom anhöriga till personer med demenssjukdomar.
Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för många
anhöriga, men att vi inte kan uttala oss om vilka dimensioner som är bra för
vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske
inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation
och målet med anhörigstödet kan också utvecklas.
Som en (ofta outtalad) röd tråd i de texter som ligger till grund för kunskapsöversikten
går samtalets eller mötets betydelse. Inom ramen för ett av 11
NKA:s lärande nätverk konstateras också att det enskilda samtalet kanske är
vårt mest underskattade anhörigstöd. Samtalet som stödform har dock inte
lyfts fram i någon större utsträckning inom forskning och utvärderingar
vilket innebär att mycket av innehållet i dagens anhörigstöd är osynliggjort.
Likaså saknar vi dokumenterad kunskap om det som kan benämnas som
osynligt stöd det vill säga de mer individbaserade kvalitativa dimensionerna
som kan innebära att anhöriga upplever sig sedda, känner sig trygga, har
förtroende för personal etc. Det är i samtal och möten som grunden för
detta stöd läggs.
Individualisering, utvärdering och utveckling av anhörigstöd. Kunskapsöversikt 2010:2.
Winqvist M.
(2010)
Ett av Nationellt kompetenscentrum Anhörigas (NKA) prioriterade områ-
den är Individualisering, utvärdering och utveckling av anhörigstöd. Syftet
med denna kunskapsöversikt är att utifrån en litteraturgenomgång beskriva
hur anhörigstöd har utvecklats och vad forskning och utvärderingar av anhörigstöd
har givit för resultat med fokus speciellt på anhörigstödets anpassning
till anhörigas olika förutsättningar.
Frågeställningar som studeras är:
• Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
• Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
• Hur ser anhörigas behov av stöd ut?
• Vad har utvärderingar av olika former av anhörigstöd givit för resultat
när det gäller anpassning till individuella behov och situationer.
Kunskapsöversikten bygger på publicerade forskningsresultat, FoUrapporter,
utredningar och offentliga skrifter från tidsperioden år 2000 till
mitten av år 2008. Endast svenska förhållanden studeras.
Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar
av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig
300 och framåt. Statens satsningar har varit stora och anhörigstödet
har utvecklats starkt, men mycket återstår att göra inom området. Kunskap
som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet
och om anhörigstödet motsvarar anhörigas behov.
För att problematisera vad det är för olika slags behov och situationer
som anhörigstödet skall möta görs en genomgång av den kunskap som
finns om anhörigskapets olika förutsättningar. Teman som behandlas är
olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform,
sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vårdoch
omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns
betydelse, socialt stöd och coping. Resultatet av denna genomgång
visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer
och att detta ställer krav på anhörigstödet om det skall skräddarsys eller
individualiseras.
Hur det är att vara anhörig och anhörigvårdare, speciellt till personer med
demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhöri-
10
gas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman
samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma
samtidigt och kanske till och med förutsätter varandra. Återkommande
inom forskningen beskrivs känslomässiga och existentiella upplevelserna
som svåra, tillsammans med bundenhet och fysisk trötthet. Studier
visar även att anhöriga kan skatta sina liv i positiva termer och att det är
tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna
stödbehov, men insatser som efterfrågas är avlösning (flexibel och med kort
varsel), information och kunskap, någon att tala med, att bli bekräftad, uppskattad
och sedd samt ekonomisk ersättning. Att vara anhörig i samband
med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon
som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets
slutskede kan innebära speciella krav och förväntningar. En presentation ges
därför av den kunskap som vi har av att vara anhörig i dessa specifika situationer.
Genomgången avslutas med en redovisning av de utvärderingar som har
gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård
och växelvård, dagverksamhet, kombination av dag- och nattavlösning och
avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av
personal, anhörigcentraler och träffpunkter, må bra-aktiviteter, enskilda
samtal samt övrigt stöd. De erfarenheter som har dragits av att använda
instrumentet COAT för planering, uppföljning och utvärdering av stöd till
anhöriga redovisas samt resultaten från de två svenska kontrollerade interventionsstudierna
om anhörigstöd som finns där resultaten visar att utbildning
och stödgrupper för anhöriga har positiva effekter.
Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget
inom området eftersom dokumentation och systematiska uppföljningar
av befintliga verksamheter när det gäller innehåll och kvalitet,
vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning
saknas. Området är också behäftat med en del metodologiska svårigheter
som bland annat medför att det är svårt att jämföra resultaten mellan olika
studier. Mest kunskap har vi om sammanboende anhörigas situation, oftast
makar och makor och dessutom anhöriga till personer med demenssjukdomar.
Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för många
anhöriga, men att vi inte kan uttala oss om vilka dimensioner som är bra för
vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske
inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation
och målet med anhörigstödet kan också utvecklas.
Som en (ofta outtalad) röd tråd i de texter som ligger till grund för kunskapsöversikten
går samtalets eller mötets betydelse. Inom ramen för ett av
11
NKA:s lärande nätverk konstateras också att det enskilda samtalet kanske är
vårt mest underskattade anhörigstöd. Samtalet som stödform har dock inte
lyfts fram i någon större utsträckning inom forskning och utvärderingar
vilket innebär att mycket av innehållet i dagens anhörigstöd är osynliggjort.
Likaså saknar vi dokumenterad kunskap om det som kan benämnas som
osynligt stöd det vill säga de mer individbaserade kvalitativa dimensionerna
som kan innebära att anhöriga upplever sig sedda, känner sig trygga, har
förtroende för personal etc. Det är i samtal och möten som grunden för
detta stöd läggs.
Individualisering, utvärdering och utveckling av anhörigstöd. Uppdaterad version 2016:4
Winqvist Marianne
(2016)
Ett av Nationellt kompetenscentrum Anhörigas (Nka) prioriterade områden har varit Individualisering, utvärdering och utveckling av anhörigstöd. Syftet med denna kunskapsöversikt är att utifrån litteraturgenomgångar beskriva hur anhörigstöd för anhöriga som ger omsorg till äldre personer, har utvecklats och vad forskning och utvärderingar av anhörigstöd har givit för resultat med fokus speciellt på anhörigstödets anpassning till anhörigas olika förutsättningar. Översikten är en uppdaterad version av en rapport med samma namn som kom ut år 2010.
Frågeställningar som studerats är:
Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
Hur ser anhörigas behov av stöd ut?
Vad har utvärderingar av olika former av anhörigstöd givit för resultat när
det gäller anpassning till individuella behov och situationer. Kunskapsöversikten bygger på publicerade forskningsresultat, FoU-rapporter, utredningar och offentliga skrifter från tidsperioden år 2000 till mitten december år 2015. Endast svenska förhållanden studeras.Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig 300 och framåt. Statens satsningar har varit stora och anhörigstödet har utvecklats starkt, men mycket återstår att göra inom området. Kunskap som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet och om anhörigstödet motsvarar anhörigas behov. För att problematisera vad det är för olika slags behov och situationer som anhörigstödet skall möta görs en genomgång av den kunskap som finns om anhörigskapets olika förutsättningar. Teman som behandlas är olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform, sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vård- och omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns betydelse, socialt stöd och coping. Resultatet av denna genomgång visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer och att detta ställer krav på anhörigstödet om det skall skräddarsys eller individualiseras. Hur det är att vara anhörig som ger omsorg, speciellt till personer med demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhörigas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma samtidigt och kanske till och med förutsätter varandra. Återkommande inom forskning beskrivs känslomässiga och existentiella upplevelser som svåra, tillsammans med bundenhet och fysisk trötthet. Studier visar även att anhöriga kan skatta sina liv i positiva termer och att det är tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna stödbehov, men insatser som efterfrågas är avlösning (flexibelt och lättillgängligt), information och kunskap, någon att tala med (att bli bekräftad, uppskattad och sedd) samt ekonomisk ersättning. Att vara anhörig i samband med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets slutskede kan innebära speciella krav och förväntningar. En presentation ges därför av kunskap om att vara anhörig i dessa specifika situationer. Genomgången avslutas med en redovisning av de utvärderingar som har gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård och växelvård, dagverksamhet, kombination av dag- och nattavlösning och avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av personal, anhörigcentraler och träffpunkter, "må bra-aktiviteter", enskilda samtal samt övrigt stöd. De erfarenheter som har dragits av att använda instrumentet COAT för planering, uppföljning och utvärdering av stöd till anhöriga
redovisas samt resultaten från svenska kontrollerade interventionsstudier om anhörigstöd där resultaten visar att utbildning och stödgrupper för anhöriga har positiva effekter. Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget inom området anhörigstöd eftersom dokumentation och systematiska uppföljningar av befintliga verksamheter när det gäller innehåll och kvalitet, vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning saknas. Området är också behäftat med en del metodologiska svårigheter som bland annat medför att det är svårt att jämföra resultaten mellan olika studier. Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för
många anhöriga, men att det är svårt att uttala vilka dimensioner som är bra för vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation och målet med anhörigstödet kan utvecklas. I kunskapsöversikten diskuteras också avgränsningar när det gäller vad som skall kallas för anhörigstöd samt allmänt behovet av definitioner av använda ord och begrepp.
From cognitive information to shared meaning: healing principles in prevention intervention
Beardslee W.R., Swatling, S., Hoke, L., Rothberg P.C., van de Velde, P., Focht, L. & Podorefsky, D.
(1998)
Families with parental affective disorder participated in a large-scale longitudinal study which involved participation in a standardized, short-term, psychoeducational preventive intervention. These families were followed for at least 3 years. An analysis of clinical material from the first 12 families to complete the intervention identified specific healing principles that contributed to positive changes in behavior and attitude. The healing elements of the intervention included demystification of the illness, modulation of shame and guilt, increase in the capacity for perspective taking, and development of a hopeful perspective and belief in one's own competence. Therapeutic effectiveness evolved in a process that linked cognitive information and presented depression as an illness that could be understood with the acknowledgement of family members' individual and collective experience. In this way, families developed a shared understanding of the illness that was useful over time. This article discusses the ways in which the healing principles promoted changes in family members' behavior and attitude, which, in turn, enhanced resiliency in children.
From symptom to context: a rewiev on the litterature on refugee childrens mental health
De Haene, L., Grietens, H., & Verschueren, K.
(2007)
In this paper, we aim to review the growing body of research on the psychosocial well-being of refugee children. We start with an overview of the chronological models for the refugee experience that conceptualize the process of forced migration as a long-term adverse context of cumulating risk factors, functioning as a pervasive threat to refugee children's mental health. Next, we briefly summarize the literature on refugee children's mental health as the starting point for a critical reflection on the dominance of the symptom-focused, trauma-centred approach which characterises much of refugee research. Drawing from this, we argue for the pertinence of research on refugee children's mental health from a family perspective. Finally, we propose a model for the refugee family experience, which integrates multiple individual, family and cultural processes, and we organise existing findings on refugee families in relation to six domains of the refugee family life. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
From symptom to context: a rewiev on the litterature on refugee childrens mental health
De Haene, L., Grietens, H., & Verschueren, K.
(2007)
In this paper, we aim to review the growing body of research on the psychosocial well-being of refugee children. We start with an overview of the chronological models for the refugee experience that conceptualize the process of forced migration as a long-term adverse context of cumulating risk factors, functioning as a pervasive threat to refugee children's mental health. Next, we briefly summarize the literature on refugee children's mental health as the starting point for a critical reflection on the dominance of the symptom-focused, trauma-centred approach which characterises much of refugee research. Drawing from this, we argue for the pertinence of research on refugee children's mental health from a family perspective. Finally, we propose a model for the refugee family experience, which integrates multiple individual, family and cultural processes, and we organise existing findings on refugee families in relation to six domains of the refugee family life. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
From user needs to system specifications: multi-disciplinary thematic seminars as a collaborative design method for development of health information systems
Scandurra, I., Hagglund, M. & Koch, S
(2008)
Från anhörigvårdare och förälder till förälder och anhörig (Examensarbete, 2004:15).
Gustavsson, M., & Lindström, H.
(2004)
Från anhörigvårdare och förälder till förälder och anhörig, 2004:15).
Gustavsson, M., & Lindström, H.
(2004)
Från fattigvård till socialtjänst: om socialt arbete och utomparlamentarisk aktivitet
Pettersson, U.
(2011)
Vilken människosyn och vilka värderingar ligger till grund för socialtjänstens verksamhet, och hur har de påverkat uppbyggnaden av dagens socialtjänst? Kan sociala insatser huvudsakligen beskrivas som myndighetsutövning, där även tvång kan komma i fråga, eller kan de ses som en verksamhet med respekt för den enskildes vilja och integritet? Under socialvårdens utveckling från fattigvård till socialtjänst har två utomparlamentariska grupper utifrån olika ideologiska utgångspunkter haft stor betydelse för socialvårdslagarnas innehåll och utformning. Centralförbundet för socialt arbete (CSA) verkade som initiativtagare och pådrivare när de första lagarna stiftades vid förra sekelskiftet. Samarbetskommittén för socialvårdens målfrågor, som bildades i slutet av 1960-talet, hade möjlighet att påverka Socialtjänstlagens slutliga utformning.
Boken innehåller en skildring av den tidigare socialvården och beskriver hur de två grupperna agerade för att få gehör för sina idéer. Särskild uppmärksamhet ägnas Samarbetskommittén och dess framgångar och misslyckanden under den 14 år långa lagstiftningsprocessen, som i det turbulenta slutskedet med många regeringsskiften och skiftande ideologier särskilt kom att handla om tvångsvården av vuxna missbrukare.
Boken vänder sig främst till studerande och verksamma inom socialt arbete, men bör även vara av intresse för närliggande ämnesområden inom samhällsvetenskap och historia.
Från nyhet till vardagsnytta. Om implementeringens mödosamma konst. En forskningssammanställning
Gullbrandsson, K.
(2007)
Från socialbidrag till äldreförsörjningsstöd : en reform ur äldre invandrares perspektiv. Lic.,
Albertsson, M.
(2008)
Från systemteori till familjeterapi
Schjödt B, Egeland TA
(1994)
Denna grundbok i familjeterapi ger en bred introduktion till familjeterapins historia, dess grundläggande idéer och de viktigaste familjeterapeutiska modellerna.
Boken behandlar bl a:
• familjeterapins historia från 1950-talet till våra dagar,
• det teoretiska fundamentet för familjeterapi, inklusive en introduktion till systemteori, livscykelteori och kommunikationsteori,
• de viktigaste familjeterapeutiska modellerna, med fokus på deras teoretiska bas och praktiska användning.
Boken är avsedd för grundläggande högskole- och universitetsutbildning i psykologi, socialt arbete, vård och omsorg. Den är av intresse för alla som arbetar med familjer: psykologer, socionomer, vårdpersonal och präster.
Främja, Skydda, Övervaka – FN:s konvention om rättigheter för personer med funktionsnedsättning. Delbetänkande från Delegationen för mänskliga rättigheter i Sverige
SOU
(2009)
Functional ability and health complaints among older people with a combination of public and informal care vs. Public care only
Karlsson, S., Edberg, A.-K., Westergren, A., & Hallberg, I. R.
(2008)
Functional ability and health complaints among older people with a combination of public and informal care vs. Public care only.
Karlsson, S., Edberg, A.-K., Westergren, A., & Hallberg, I. R.
(2008)
Fungerande vård för svårt sjuka äldre : en fallstudie av samverkan mellan hemsjukvård och primärvård i Göteborgs södra skärgård.
Larsen, T.
(2009)
FUNKIS – funktionshindrade elever i skolan. Funkiskommittén
SOU
(1998)
Den 23 november 1995 bemyndigade regeringen det statsråd som har till uppgift att föredra ärenden om det offentliga skolväsendet och fristående skolor att tillkalla en kommitté (U 1995:14) med uppdrag att utreda hur ansvaret för utbildning och omvårdnad i anslutning till utbildning av funktionshindrade elever skall fördelas mellan stat, kommun och landsting samt vem som skall finansiera verksamheten
Informal care in Sweden: a typology of care and caregivers
Jegermalm, M.
(2006)
Informal care in Sweden: A typology of care and caregivers.
Jegermalm, M.
(2006)
Informal caregivers' conceptions of daily life with a spouse having chronic obstructive pulmonary disease
Lindqvist, G.
(2013)
The overall aim of this thesis was to explore informal caregivers' daily life with particular focus on those living with a spouse who has Chronic Obstructive Pulmonary Disease (COPD) in different grades, mild to severe, based on the ill person's main concern. The study design was explorative, comparative and descriptive. The thesis included a literature review of 45 scientific articles and semi-structured interviews with 23 patients suffering from COPD, and 21 women and 19 men living with a spouse suffering from COPD. Data were analysed using content analysis, grounded theory, and phenomenography. Main findings: Men and women living with a spouse suffering from mild COPD did not experience changes in their daily life, and were not in need of support. It was when the COPD gradually escalated that their daily life was affected and they needed support. The caregiving women conceived that their daily life was socially restricted, they had changed roles, changes in health and changes in the couple's relationship. The caregiving men's daily life was conceived as burdened, restricted and the partner relationship was affected. The men's attitude was to continue with their own life and own activities, and their approach to their caregiving situation was to view themselves as "Me and my spouse". The main concern for people suffering from COPD was feelings of guilt due to self-inflicted disease associated with smoking habits. The thesis shows that there are differences in informal caregiving between males and females. Conclusion: This thesis shows that there are differences in male and female caregiving for a spouse suffering from COPD. The caregivers conceive and handle the caregiving situation in different ways. It is central that health professionals and municipality consider this along with the individual needs that are related to the development of the COPD. There is a need to identify the person who suffers from COPD and their spouses from the first contact onwards, to regularly follow the development of their situation and need of support.
Informal caregivers who are interested and do make use of information and communication technologies
Lindqvist Gunilla, Elizabeth Hanson
(2018)
Abstract
Objective: The aim of the study was to highlight informal caregivers' interest in using the Information and Communication Technology (ICT)-based ACTION service (Assisting Carers using Telematics Interventions to meet Older People's Needs) and their ideas for how to further develop and extend the service. The use of ICT is constantly increasing worldwide. Europe has the highest old age dependency ratio, but other parts of the world are also experiencing a dramatic ageing of their population. The demands for care are increasing, and resources are shrinking. One way to support informal caregivers is through ICT.
Methods: The study employed a qualitative design. Focus group interviews were carried out with informal caregivers in Sweden. The interviews were analysed using a latent content analysis method.
Results: The analysis yielded a major theme, striving to feel confident, with four categories: informal caregivers' reflections and ideas about ICT; promoting their own health process; increasing their knowledge bank and informal caregivers' rights; and striving for inclusiveness.
Conclusions: The present study highlights the challenges that informal caregivers face in their daily life as well as their resources to devise possible solutions that could improve their situation. To preserve their health, a carer support plan including regular health checks could be helpful. ICT-based support (such as the ACTION service) could act as a way forward for supporting informal caregivers in their striving to feel confident. The study highlighted that ICT-based support has the potential to act as a direct benefit for informal caregivers.
Informal Caregiving and Quality of Life Among Older Adults: Prospective Analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH)
Lawrence B. Sacco, Stefanie König, Hugo Westerlund, Loretta G. Platts
(2020)
Abstract [en]
Providing unpaid informal care to someone who is ill or disabled is a common experience in later life. While a supportive and potentially rewarding role, informal care can become a time and emotionally demanding activity, which may hinder older adults' quality of life. In a context of rising demand for informal carers, we investigated how caregiving states and transitions are linked to overall levels and changes in quality of life, and how the relationship varies according to care intensity and burden. We used fixed effects and change analyses to examine six-wave panel data (2008–2018) from the Swedish Longitudinal Occupational Survey of Health (SLOSH, n = 5076; ages 50–74). The CASP-19 scale is used to assess both positive and negative aspects of older adults' quality of life. Caregiving was related with lower levels of quality of life in a graded manner, with those providing more weekly hours and reporting greater burden experiencing larger declines. Two-year transitions corresponding to starting, ceasing and continuing care provision were associated with lower levels of quality of life, compared to continuously not caregiving. Starting and ceasing caregiving were associated with negative and positive changes in quality of life score, respectively, suggesting that cessation of care leads to improvements despite persistent lower overall levels of quality of life. Measures to reduce care burden or time spent providing informal care are likely to improve the quality of life of older people.
Informal caregiving in old age : Content, coping, difficulties and satisfaction
Kristensson Ekwall, A.
(2004)
Older people take a great share of caregiving responsibility already and thus understanding of their strain, coping and satis-faction is required. The aim was to investigate dimensions of caregiving activities among elderly (75+) caregivers and to study the dimensions in relation to health-related quality of life (Paper I). It was also to investigate quality of life in relation to loneliness, caregiving, social network, gender, age and economic status among men and women in a population-based sample aged 75 or older (Paper II). Another aim was to investigate coping strategies and sense of coherence (SOC) in relation to gender, the extent of care, caregiving activities and QoL in a sample of caregivers aged 75+ (n=171) and to explore the reliability and validity of an instrument assessing coping (CAMI) (Paper III). It was also to study correlation between gender, extent and content of the care, coping, satisfaction and difficulties in the caregiving situation and to identify clusters of caregivers (Paper IV), and to psycho-metrically explore two instruments assessing satisfaction (CASI) and difficulties (CADI) in the care (Paper IV) as well as sources of satisfaction together with caregiving difficulties. Responses to a Swedish postal survey (n=4278) (Paper II) showed that 18% helped another person due to that person's impaired health (Paper I), 41.6% women among the caregivers, mean age 81.8 (SD 4.96) for men 81.7 (SD 4.32). The second sample included 171 caregivers (59.6% men, mean age 82.1, SD 4.6, women 80.6, SD 3.9), response rate 47%, of whom almost 70% provided help every day (Papers III & IV). Adapting their activities to be prepared if something happened (52%), having regular contact to prevent problems (35%), helping in contacts with the hospital (57%), helping with IADL (49%), PADL (14%), medical care (11%) and helping to improve functions (14%) were activities reported. Adapting own activities, regular contact, weak economy and needing help with IADL oneself predicted low MCS-12 (Paper I). Caregivers had a larger social network and reported feelings of loneliness less often than non-caregivers, indicating that caregiving takes place mainly in the phase when the older person is healthy (Paper II). There were gender differences in loneliness, with women being more lonely. Loneliness and a small network were associated with low QoL among caregivers as well as elderly in general (Paper II). The 25% of the respondents (n=171) with the lowest MCS-12 scores were more dissatisfied with the information given about the practical and medical care than those with higher scores (Paper III). Higher MCS-12 predicted with using self-sustaining coping and a high SOC while poor economy and asking for social and practical support predicted low scores. The most frequent source of satisfaction was seeing the care recipient happy (77%) and problems with mobility in the person cared for (28%) and difficulties sleeping were frequently reported (14%) which shows that feelings of satisfaction were more frequent than experiencing difficulties. The difficulties did not differ between men and women.
Informal carer bereavement outcome: relation to quality of end of life support and achievement of preferred place of death
Grande, G. E., & Ewing, G.
(2009)
Informal carers of older family members: how they manage and what support they receive from respite care
Salin, S., Kaunonen, M. & Astedt-Kurki, P.
(2009)
Förebyggande hembesök till äldre: en modell för det hälsofrämjande arbetet. Rapport 2007:20.
Stiftelsen Stockholms läns äldrecentrum
(2007)
Förhandsgranskningar i barnavårdsärenden
Gegner, H.
(2009)
Förskola i brytningstid
Skolverket
(2004)
Skolverket presenterar den första nationella utvärderingen av förskolan efter reformen 1998 då förskolan fick en läroplan och blev det första steget i det samlade utbildningssystemet för barn och ungdom. Utvärderingens övergripande syfte är att belysa hur förskolan utvecklats i olika avseenden efter reformen samt att ge en lägesbeskrivning av reformens effekter. Utvärderingen visar på att förskolans utveckling innehåller både positiva och problematiska inslag. Förskolans läroplan har tagits emot positivt i kommuner och förskolor, men har man lyckats uppnå det som var en av de viktigaste målen med reformen "en likvärdig förskola"?Förskolan har dessutom i en rad avseenden närmat sig skolan, i vissa fall på bekostnad av sin särart. Barns prestationer kartläggs och bedöms i ökad omfattning, vilket strider mot grundtankarna i reformen.
Förskrivningsprocessen, fritt val av hjälpmedel, egenansvar
Hjälpmedelsinstitutet
(2011)
Beskrivning av vilket ansvar förskrivaren har utifrån lagar, förordningar och föreskrifter. Vägledning för förskrivare och annan personal inom hjälpmedelsområdet.
Förstudie 2004 : Kommunernas behov av e-tjänster för vård och omsorg
Kemlén, A.
(2004)
Förstärkt stöd till anhöriga som hjälper och vårdar närstående
Olsson, Carina
(2011)
Förstärkt stöd till anhöriga som hjälper och vårdar närstående. Meddelandeblad, (2006-1-2)
Socialstyrelsen
(2006)
Föräldrabalk
SFS (1949:381).
(1949)
Föräldraboken om ADHD
Lena Westholm
(2016)
"Föräldraboken om ADHD" vänder sig till föräldrar som har ett barn eller en tonåring med ADHD. Grundtanken är att ökad kunskap om ADHD ska göra det lättare för föräldrarna att förstå och stödja sitt barn.
Boken är skriven av psykolog Lena Westholm. Hon arbetar på ADHD-center inom Habilitering och Hälsa i Stockholms läns landsting.I boken konstateras att föräldrar till barn eller tonåringar med ADHD måste kämpa och använda mer energi än andra föräldrar för att få tillvaron att fungera. Det ställs stora krav på tålamod, planering och konflikthantering.
Läsaren ges tips på olika sätt att lösa problem och hur det kan bli lättare att hantera vardagen. Områden som tas upp är ADHD i olika åldrar, skolgång, medicinering, fritid, mat- och sovvanor, relationer, känslor med mera.
Föräldrakontakt och familjetillhörighet ur fosterbarns perspektiv
Andersson, Gunvor
(1998)
Föräldralärande - vad är det? : om föräldrautbildning och föräldraprogram för familjer som har barn med diagnoser inom autismspektrumet
Solders, L.
(2006)
Föräldralärande – Vad är det? Om föräldrautbildning och föräldraprogram för familjer som har barn med diagnoser inom autismspektrumet
Solders, Lena
(2006)
Föräldralärande inom barnhabilitering. Teori och praktik
Solders, Lena
(2008)
Föräldrautbildning erbjuds idag bl.a. inom förskola/skola, socialtjänst liksom hälso- och sjukvård. Lärandet kan beskrivas ur olika perspektiv. Om barnet är det primära brukar man tala om Parent Education, när fokus ligger på familjen som helhet talar man om Parent Training och när det är föräldrarna som står i centrum för utbildningsinsatsen säger man ofta Parent Support. En viktig tanke är att få tillstånd ett bra samarbete mellan föräldrar och personal. Det är nödvändigt för att skapa större delaktighet och ett bättre lärande för föräldrar.
Föräldrar med kognitiva svårigheter – att bryta ny mark Erfarenheter från Uppsala län
Bruno, L.
(2012)
Föräldrar med kognitiva svårigheter – att bryta ny mark. Erfarenheter från Uppsala län
Bruno, L.
(2012)
Föräldrar med utvecklingsstörning och deras barn –vad finns det för kunskap?
Socialstyrelsen
(2005)
I denna samanställning av befintlig forskning framkommer att några områden är mer studerade än andra. Ett antal studier har undersökt föräldraförmåga och föräldrakompetens. I dag vet man ganska väl vad som kan fungera och vad som kan brista i föräldrarnas förmåga att ta hand om sina barn. Resultat från olika studier visar att träning och utbildning kan förbättra föräldrarnas förmåga. En förutsättning för detta är dock att utbildningen är kontinuerlig såväl över tid som i kontakten med de professionella. Befintliga studier inkluderar oftare mödrar än fäder vilket innebär att det finns mer kunskap om mödrarna. Endast ett fåtal studier har undersökt fäderna och männen i kvinnornas liv.
Vidare finns det ett fåtal studier som fokuserar barnet i de familjer där föräldrarna har en utvecklingstörning. Den forskning som finns visar dock att barnen utgör en riskgrupp. Riskfaktorerna varierar delvis beroende på barnets ålder, men även beroende på om barnet har en utvecklingsstörning. Det rapporteras att det finns risk för att barnen försummas vilket kan ta sig uttryck i bristande omvårdnad, att barnen inte får näringsriktig kost, bristande säkerhet i hemmet och bristande hygien. Det finns även risk för att barnen utsätts för misshandel. Studier visar en ökad risk för att barn med utvecklingsstörning utsätts för misshandel och/eller sexuella övergrepp jämfört med andra barn, oavsett om föräldrarna har en utvecklingsstörning eller inte.
Det rapporteras att barn som har föräldrar med utvecklingsstörning kan ha svårigheter med språklig och kognitiv utveckling. Dessutom förekommer det att barnen har beteendeproblem och emotionella svårigheter och det är vanligare att barnen har psykiska svårigheter, framför allt depressioner, än andra barn. Förekomsten av svårigheter samt barnens utsatthet kan påverka barnens förmåga att senare i livet fungera som föräldrar.
Hur livet gestaltar sig för de barn som har vuxit upp med föräldrar som har en utvecklingstörning finns det liten kunskap om. I en dansk studie har forskarna funnit att kvinnorna lever ett mer utsatt liv än männen. I en studie från England finns det resultat som visar att de "vuxna barnen" som själva har en utvecklingsstörning har ett mer fungerande liv jämfört med de "vuxna barn" som är normalbegåvade.
Familjernas möten med det offentliga har studerats ur ett antal olika perspektiv, såväl barnens, föräldrarnas, närståendes som professionellas. I mötet mellan familj och professionella rapporteras att det är av stor betydelse att professionella är väl förtrogna med familjens behov, att de samordnar sina insatser, att det inte är för många inblandade och att man samverkar med familjen och tar hänsyn till familjemedlemmarnas behov.
När det gäller hälsobefrämjande faktorer i familjer där föräldrarna har en utvecklingsstörning finns det resultat som visar på betydelsen av såväl informella som formella nätverk. Forskare har funnit att det är olika karaktär på stödet från det formella respektive det informella nätverket. Det informella nätverket bidrar med praktisk hjälp i vardagslivet. Det formella nätverket bidrar med sakkunskap om viktiga funktioner i samhället, kunskap om interaktion mellan föräldrar och barn samt stöd för att föräldrarna skall utveckla sin kompetens.
Flertalet studier påpekar vikten av att kartlägga föräldrarnas och familjernas levnadsomständigheter för att kunna genomföra relevanta insatser. En rad olika mer eller mindre framgångsrika insatser som prövats i familjerna har rapporterats. Som framgångsfaktorer omnämns att stödet ska utformas efter barnens och föräldrarnas behov, att det är kontinuerligt och att det genomförs under en längre tid. För att insatser skall ge god effekt bör de vara anpassade till familjens omgivning, de bör vara prestationsbaserade och omfatta förebilder, praktisk feedback, beröm och belöningar. Forskare menar även att insatserna skall utformas så att det blir möjligt för föräldrar att utvecklas utifrån sina förutsättningar.
Föräldrar och barn inom den psykiatriska öppenvården – en kartläggning
Skerfving, Annemi
(1998)
Föräldrars erfarenhet av kontakt med psykiatrisk vård - behov, upplevelser och önskemål, en pilot studie
Ewertzon, M. and H. Forssell
(1994)
Syfte med föreliggande studie var att identifiera centrala kategorier och dimensioner som beskriver: "Föräldrars, till schizofrena barn, erfarenhet av kontakten med psykiatrisk vård". Beskrivningen bygger på föräldrars erfarenhet - behov, upplevelser och önskemål, av kontakten i samband med barns sjukdom. Barn är i studien är inte ett åldersrelaterat begrepp utan beskriver förhållandet till föräldern. Den metod studien bygger på är inspirerad av "Grounded theory" och har genomförts med ostrukturerade intervjuer. Fyra intervjuer med föräldrar till barn med en psykossjukdom har analyserats. Två män och fyra kvinnor ingår i studien, de representerar erfarenhet av kontakt av psykiatrisk vård från tre sjukvårsområden inom Stockholms läns landsting och kontakten omfattar 5-16 år. Resultatet visar såväl positiv som negativ erfarenhet av kontakten. De behov i kontakten som framträder är - behov av samarbete med psykiatrisk vård, - behov av att bli omhändertagna och - behov av kontakt med människor i samma situation. De upplevelser i kontakten som framkommer är - upplevelser av samarbete, - upplevelser av bristande samarbete - upplevelser av att bli omhändertagna. - upplevelser av dåligt bemötande, upplevelser av att bli skuldbelagda och - upplevelser av bristande kontinuitet i vården. De önskemål på kontakten som framkommer är - önskemål om samarbete, - önskemål om metoder för gott omhändertagande, - önskemål om behandlingsinriktning, - önskemål om att ej bli skuldbelagda, - önskemål om anhörigutbildning och önskemål om samarbete med IFS -Intresseföreningen för schizofreni eller andra psykotiska sjukdomar.
Föräldraröster
Rausch, B.
(2013)
InledningUnder många år har Föräldrautbildningen/anhörigutbildningen vid Forum Funktionshinder engagerat socionomBerit Rauschsom föreläsare för föräldrar på temat "Det finns en framtid –men vad gör man av allt det som känns tungt?". Berit har också lett kurser i konsultativt förhållningssätt som riktat sig till paramedicinsk personal inom Habilitering & Hälsa och handlett personal. Berit är själv förälder till en idag vuxen dotter med funktionsnedsättning. Utifrån sina erfarenheter såg Berit ett behov av att fördjupa kunskapen om föräldrars situation genom föräldraintervjuer för att sedan kunna använda den kunskapen som underlag för diskussion och kompetensutveckling för personalen inom Habilitering & Hälsa.Frågan om en studie diskuteradesinom ledningsgruppen för Utvecklingsforum och i FoU-rådet vid flera tillfällen. Några synpunkter som framkom var att Fokus bör ligga på riskfaktorer och kritiska punkter. Hur identifierar man dem? Hur fångar man upp? I diskussion med verksamhetschef och Utvecklingsforum kom vi överens med Berit Rausch om att genomföra projektet Föräldraröster. BakgrundBerit Rausch, initiativtagare till projektet Föräldraröster, har mångårig erfarenhet av såväl föräldragrupper som handledning av personal inom bland annat Habilitering &Hälsa. Föräldrar som får ett barn med funktionsnedsättning genomgår eninre process som till stora delar påminner om en sorgeprocessnär man utsätts för en förlust av något slag.Även i handledningssituationer blir denna process aktuell när situationer som personal har att handskas medska diskuteras. Sjukgymnaster, logopeder, arbetsterapeuter etc saknar utbildning i psykosocialt arbete.Isamtal med nyckelpersoner inom Habilitering &Hälsa har framkommit att organisationenhar intresse av att titta närmare på vad det är som gör att vissa föräldrar kommer vidare i sin process efter att ha fått ett barn med funktions-nedsättning, medan andra "fastnar" i någon av krisens faser, förnekelse, ilska eller sorg. Frågeställningen ska ses i relation till habiliteringens utbud och arbetssätt samt förhållningssätt och bemötande av personer i kris.Vi såg det också som oerhört viktigt att förmedla den unika kunskap och kompetens som föräldrar har, till all personal inom Habilitering & Hälsa.
SyfteAtt utforska vilka kritiska punkter som föräldrar beskriver för hur de tagit sig vidare/"fastnat"ochhur föräldrar utifrån sin unika situation ser på Habilitering & Hälsas utbud, insatser, förhållningssätt och bemötande.ProjektmålAtt fördjupa kunskapen om riskfaktorer,kritiska punkter och föräldrars behov av stöd i olika faser. Att presentera resultatet av intervjuernai en sammanfattande rapport. Att inspirera till kompetensutveckling hos personal när det gäller bemötande och till anpassning av habiliteringens insatser.MetodBerit Rausch har gjort en kvalitativstudie bestående av djupintervjuer med 10 föräldrapar utifrån ett semi-strukturerat frågeformulär.Anhörigutbildningen vid Forum Funktionshinder mejlade 338 föräldrar som hade anmält sig till anhörigutbildningar under hösten 2010 och ställde frågan om de var intresserade av att bli intervjuade av Berit Rausch. 36 föräldrar/föräldrapar svarade att det var intresserade. Tillsammans med Berit valdes 11 föräldrar/föräldrapar ut för intervju. Urvalet gjordes utifrån ålder och diagnos för att i möjligaste mån få en så stor spridning som möjligt.10 familjer intervjuades.ProjektorganisationProjektgruppens medlemmar har bestått av Eva Norberg, informationschef (projektägare tom januari 2012) Barbro Lagander, verksamhetschef VO Stockholm (projektägare from februari 2012), Marie Bökman, konsulent vid Forum (projektledare), Kristina Eklund, konsulent vid Forum och Barbro Sjöström Miljand, enhetschef Kris-och samtalsmottagningen, Länscenter. ProjektresultatProjektet har bidragit medett skriftligt material som beskriver riskfaktorer och olika sätt att handskas med sin livssituation, vilket kan bidra till ökad förståelsen för föräldrars olika sätt att skapa en fungerande vardag. Föräldraröster kan användas i personalutbildningen och utveckling av metoder för föräldrastöd.
Föräldraskap hos vuxna med ADHD eller Autismspektrumtillstånd - konsekvenser för barnet samt metoder för stöd Systematisk kunskapsöversikt
Janeslätt Gunnel & Hayat Roshanay Afsaneh
(2015)
Det finns idag mycket kunskap om barn med neuropsykiatriska funktionsnedsättningar (NPF) som uppmärksamhetsstörning med hyperaktivitet (Attention-Deficit/Hyperactivity Disorder ADHD) och autismspektrumtillstånd (AST). Det finns också en del kännedom om vilka konsekvenser barnens svårigheter får för individ och samhälle. Det är konstaterat att ADHD och AST kvarstår i vuxen ålder, även om symtombilden och problematiken kan te sig annorlunda. Kunskapen om föräldraskap hos vuxna med ADHD eller AST är dock begränsad. Syftet med denna studie var att på ett systematiskt sätt sammanställa kunskap om barn och föräldrar när föräldrar har konstaterad ADHD, ADHD-symtom eller AST samt evidens för metoder som syftar till att ge stöd i föräldraskapet. Tre frågeställningar har styrt arbetet:
1. Vad vet man om hur barnet och föräldraskapet påverkas när förälder/rar har
konstaterad ADHD?
2. Vad vet man om hur barnet och föräldraskapet påverkas när förälder/rar har
konstaterad AST/Aspergers syndrom?
3. Vilka evidensbaserade metoder prövade på dessa målgrupper finns som kan
påverka föräldraskapet och barnet/en?
Föräldraskap och expertis. Motsättningar kring handikappade barn
Åkerström, Malin
(2004)
När man möter en mamma eller pappa berättar de kanske om sitt barn. Men är barnen deras? I många andra sammanhang talas det om våra barn: skolan, sjukvården, föreningar gör också anspråk på att äga barnen. Världen kring handikappade barn sätter förhållandet på sin spets: där finns en myriad av yrken och institutioner, som hävdar att de både vet mer och vet bäst.
Experternas kunskaper är eftersökta samtidigt skall de uppvisa en måttfull och balanserad expertis; föräldrarnas kompetens skall erkännas enligt de föräldrar som intervjuas i boken. Föräldrarna till döva, hjärnskadade, diabetessjuka barn och barn med andra handikapp ger sin bild av mötet med sjukvården, daghemmet och skolan: en bild som är drastisk och dramatisk och skildrar dilemman, strider samt konkurrensen mellan med såväl professionella som andra föräldrar. Författaren hävdar emellertid att denna bild kan översättas till de flesta moderna föräldraskap: här ges den i en kondenserad och tillspetsad form.
Föräldraskap och missbruk: att ta upp frågor om föräldraskap i missbruks- och beroendevården
Socialstyrelsen
(2012)
Genom svaren på de frågor som ställs om familjen är utredare och behandlare i missbruks- och beroendevården ibland de enda som känner till att barnen lever i en familj med missbruk. De behöver uppmärksamma barns och ungas situation, så att deras rättigheter, behov av information, råd och stöd tillgodoses.
Syftet med skriften är att underlätta för personal inom missbruks- och beroendevården att ta upp föräldraskap och samtala med föräldern om barns situation i utredning eller behandling. Den förespråkar ingen särskild modell eller metod i arbetet, utan tar upp förhållningssätt och innehåll i samtal om föräldraskap. Den tar även upp samarbetet med socialtjänstens barn- och ungdomsvård. Skriften riktar sig till utredare och behandlare inom socialtjänsten, hälso- och sjukvården samt övrig missbruks- och beroendevård, och kan också vara av intresse för socialtjänstens barn- och ungdomsvård. Den utgår ifrån situationen vid alkoholmissbruk eller -beroende, men kan i väsentliga delar också vara relevant vid föräldrars missbruk av narkotika eller läkemedel.
Föräldraskapande och professionell följsamhet på familjecentralers öppna förskolor – en programteori
Abrahamsson, Agneta & Bing, Vibeke
(2011)
Familjecentralens verksamhetsidé för öppna förskolan på familjecentraler – formulerat som en hypotes - har utvärderats steg för steg genom samla in data på sammanlagd sex familjecentraler för att pröva hållbarheten i hypotesen. Utvärderingen visar på ett föräldraskapande bland småbarnsföräldrar genom att de lär sig om barn och föräldraskap, får möjlighet att utöka sitt sociala kontaktnät och att bara vara i en trygg omgivning där socialt stöd finns till hands. De får tillsammans med andra känna sig 'good enough' som en vanlig förälder med ett normalt barn. Professionell följsamhet utmärker personalens arbetssätt. De bedömer den "mognadsgrad" som föräldern befinner sig i för att söka stöd och anpassar sitt förhållningssätt till föräldern genom fysiskt avstånd och djup i samtalet. På så vis kan pedagogiska, sociala och psykologiska mekanismer triggas igång och förklara de resultat som föräldrar upplever för dem själva och deras barn. Artikeln avslutas med en omformulerad hypotes om öppna förskolors verksamhet på familjecentraler
Föräldrastöd - en vinst för alla. Nationell strategi för samhällets stöd och hjälp till föräldrar i deras föräldraskap. Statens offentliga utredningar
SOU
(2008)
Föräldrastöd : en kartläggning av vilka generella metoder som används i Västmanlands län
Sköld, F.
(2009)
Föräldrastöd i Sverige 2002
Statens folkhälsoinstitut
(2003)
Internet kan ge bra stöd i föräldrarollen visar ny studie från Statens folkhälsoinstitut. Delrapport från uppdraget om föräldrastöd. Under utredningstiden har flera delrapporter tagits fram. Delrapporterna är "Föräldrastöd i Sverige år 2002", "Verklig gemenskap i en virtuell värld?", "Stöd till föräldrar för att främja barns och ungdomars psykiska hälsa" och slutrapporten "Nya verktyg för föräldrar".
Förändrad tillämpning av offentlig äldreomsorg : ett hot mot målsättningen om demokrati och jämställdhet
Sand A-B.
(2004)
Förändrad tillämpning av offentlig äldreomsorg – ett hot mot målsättningen om demokrati och jämställdhet Artikeln handlar om några effekter av den förändrade inriktningen på det offentliga ansvaret för äldreomsorgen och det är anhöriga till hjälpbehövande äldre som står i fokus.
Förändrad tillämpning av offentlig äldreomsorg : Ett hot mot målsättningen om demokrati och jämställdhet : Tema : Social omsorg
Sand, A.-B. M.
(2004)
Förändrad tillämpning av offentlig äldreomsorg : ett hot mot målsättningen om demokrati och jämställdhet : tema : social omsorg
Sand, A.-B.
(2004)
Gabriellas resa: I skuggan gömmer sig solkatterna
Elisabeth Hagborg, Tove Hennix
(2009)
I Gabriellas liv finns mycket mörker. Det finns händelser som kastar skuggor ... där mardrömmar kan gömma sig och minne kan lura.Men i det mörka finns också små stänk av ljus. Gabriella behöver hjälp att låta ljuset växa. Hjälp att resa tillbaka in i skuggan, städa ur och låta solkatterna dansa.
I den här boken har Elisabeth Hagborg samlat många års yrkeserfarenhet av vad det kan innebära att växa upp i ett dysfunktionellt hem och tillsammans med illustratören Tove Hennix skapat en bok om Gabriella.
Gait and activity in the elderly: implications for community falls-prevention and treatment programs
Cwikel J, Fried A, Galinsky D, Ring H.
(1995)
GAKK – grafisk AKK
Ida Andersson
(2007)
Om saker, bilder och symboler som alternativ och kompletterande kommunikation.
Galenskap och återhämtning – vägar till ett nytt liv för psykiskt sjuka människor
Neugeboren, Jay
(2001)
Natur och Kultur. 2001.Inbunden med skyddsomslag, 410 sidor, 23,5x15,5cm. 700 gram. Nära nyskick, anteckningar på pärmens insida.Jay och Robert Neugeboren växte upp i en judisk familj i New York under komplicerade och kaotiska emotionella förhållanden. Jay blev framgångsrik skönlitterär författare - Robert drabbades av svår psykisk sjukdom och skulle komma att åka in och ut på mentalsjukhus i fyra decennier. Han skulle underkastas alla tänkbara slags behandlingar - många med svåra biverkningar - men utan att få någon verklig hjälp. Galenskap och återhämtning är Jays bok om den fyra år yngre brodern och den psykiatriska vårdapparatens fullständiga misslyckanden att ge denne en anständig vård. Men det är framför allt en bok om hopp. Neugeborens budskap är att även svåra psykiska sjukdomar som schizofreni i hög grad är behandlingsbara. De kanske inte går att bota helt med det finns hjälp för dessa människor och hopp om återhämtning. Detta kan ske med hjälp av bra medicinsk behandling, adekvat psykoterapi men framför allt genom ett personlig engagemang hos personerna i den sjukes omgivning. Neugeboren berättar också om många spännande och dramatiska möten med andra människor som lärt sig att leva fullvärdiga liv trots svår psykisk sjukdom
Infrared-based communication augmentation system for people with multiple disabilities
Chen SC, Tang FT, Chen YL, Chen WL, Li YC, Shih YY, et al.
(2004)
Purpose: This study describes an eyeglass-type infrared-based communication board for the nonspeaking with quadriplegia. Method: This system is composed of four major components: a headset, an infrared transmitting module, an infrared receiving/signal-processing module, and a main controller, the Intel-8951 microprocessor. This design concept was based on the use of an infrared remote module fastened to the eyeglasses which could allow the convenient control of the input motion on the keys of a communication board, which are all modified with infrared receiving/signal-processing modules. For system evaluation, 12 subjects (all men, 21-45 years old, six normal subjects as the control group and six nonspeaking with quadriplegia as the experimental group) were recruited. Results: The average accuracy of the control group and the experimental group were 93.1 ± 4.3% and 89.7 ± 5.5%, respectively. The average time cost of the control group and the experimental group were 78.3 ± 8.7 s and 89.9 ± 10.2 s, respectively. An independent t-test revealed that the differences in the average accuracy and the average time cost of the control group and the experimental group were not significant (p > 0.05). Conclusions: The increase of opportunity to communicate using the infrared-based communication board would help people with multiple disabilities to socialize actively. © 2004 Taylor & Francis Ltd.
Ingenting är omöjligt! : förstärkt stöd till anhöriga som hjälper och vårdar närstående på Södermalm
Norman, E.
(2009)
In-home online support for caregivers of survivors of stroke: a feasibility study.
Pierce LL, Steiner V, Govoni AL
(2002)
The primary aim of this feasibility study was to determine if caregivers (n = 5) were willing and able to use Caring-Web, a Web-based intervention for support, from their home Internet connection for 3 months. The caregivers' perceived health and satisfaction with caring, as well as the care recipients' use of healthcare services, were recorded. The experience of caring (problems and successes) was examined. Data were collected via weekly online surveys and e-mail discussions. Descriptive analyses revealed that the 3 caregivers who completed the study were satisfied with Caring-Web. Caregivers rated their health as average to excellent and their satisfaction with caring as good. Care recipients averaged 6 calls/visits to a medical office with one emergency room visit and subsequent hospitalization. Major problems for the caregivers included dealing with medical conditions about which they lacked knowledge. Content analysis of the e-mail discussions revealed that subjects sought information about medical conditions related to caring for the survivor of the stroke. Major successes for the caregivers involved communicating effectively with the care recipient and returning to everyday life with family and friends.
Inifrån utanförskapet. Om att vara annorlunda och delaktig
Gustavsson, Anders
(2001)
Den här boken handlar om förutsättningarna för delaktighet och integration av människor som uppfattas som annorlunda eller avvikande. Författaren försöker vända på det traditionella synsättet att det är "vi" som integrerar "dem". För att istället låta de berörda själva komma till tals. En viktig erfarenhet från den undersökningen som boken bygger på är i grund och botten att våra möjligheter att förstå integrationen kräver att vi tar reda på hur den uppfattas av dem det gäller.
Huvudpersonerna är vad man brukar kalla lindrigt utvecklingsstörda. De tillhör "den första integreringsgenerationen". De har växt upp under den tid som integrering och normalisering varit den officiella handikappolitiken i Sverige. Boken handlar om hur vardagstillvaron gestaltar sig för dem. De berättar om ett utanförskap som vi känner igen från andra likartade situationer. Samtidigt uppvisar de personer som boken handlar om också en anmärkningsvärd tilltro till sin rätt att vara delaktiga i alla livssammanhang. Deras tilltro tycks bland annat bygga på ett stöd som de fått från andra med likartade erfarenheter och perspektiv på intellektuella
Initial Findings on Preventive Intervention for Families with Parental Affective Disorders
Beardslee, W.R., Hoke, L., Wheelock, I., Rothberg, P.C., van de Velde, P., & Swatling, S.
(1992)
Abstract
OBJECTIVE:
The purpose of this study was to develop a clinician-based cognitive, psychoeducational, preventive intervention for families with parental affective disorder that would be suitable to widespread use, test its feasibility and safety, and define the areas affected by the intervention. The intervention was designed to increase understanding of parental illness and resilience in the children.
METHOD:
The authors studied the first seven families (14 parents) to receive the intervention. Enrollment criteria included affective disorder during the preceding year in at least one parent, presence of at least one child between the ages of 8 and 14 years who was not psychiatrically ill at the time of participation, and willingness to participate in the research study. The intervention consisted of parent, child, and family sessions. Assessment included semistructured interviews with parents about affective disorders, standard ratings of marital satisfaction and therapeutic alliance, and a recently developed semistructured interview to assess response to the intervention.
RESULTS:
Overall satisfaction with the intervention was rated moderate to high by parents. No harm was reported. Ten of 14 parent subjects reported five or more behavior and attitude changes that they attributed to the intervention. The most frequent behavior and attitudinal changes reported were increased discussion of the illness and related issues and increased understanding of information about affective illness.
CONCLUSIONS:
The authors conclude that the intervention is safe and feasible in families with parental affective disorder.
Inledning till: 2008 Standards for bereavement Care in the UK, Nationella riktlinjer/standarder för sörjandestöd i Storbritannien och Nordirland. Översättning: Grimby, A. Johansson, Å K
Grimby, A.
(2009)
Inledning till: 2008 Standards for bereavement Care in the UK, Nationella riktlinjer/standarder för sörjandestöd i Storbritannien och Nordirland. Översättning: Grimby, A. Johansson, Å K.
Grimby, A., & Johansson, Å. K.
(2009)
De nationella, grundläggande riktlinjerna för sörjandestöd i U.K.
Behovet
Förlust av en nära anhörig är oftast den mest förödande upplevelsen i ens liv. Även om
tillvaron aldrig mer blir sig lik, finner de flesta ett sätt att anpassa sig till förlusten. Det är
normalt och naturligt att sörja. För vissa människor blir det emellertid alltför svårt eller
traumatiskt utan extra stöd.
Vid sådana tillfällen, när människor är som mest sårbara, kan organisationer med
välutvecklat och utbildat sörjandestöd erbjuda en rad lämpliga och professionella
stödformer. För första gången i U.K. finns nu en uppsättning riksomfattande, godkända
riktlinjer eller normer som garanterar att detta stöd är tryggt, lämpligt och etiskt.
Riktlinjerna och Principerna
Riktlinjerna för sörjandestöd (The Bereavement Care Standards) i detta dokument är
under ständig bearbetning. De är generellt formulerade och inte några föreskrifter. De
behöver anpassas till individuella behov och omständigheter samt tillgång till lokala
stödmöjligheter. Nyckeln till användningen av riktlinjerna utgörs av etiska principer (The
set of Ethical Principles) som kan användas universellt, oavsett om stödet är riktat till en
enskild individ eller en grupp. Dessa principer hjälper till att ange kvaliteten på det
sörjandestöd som erbjuds.
Riktlinjerna och Principerna avser att:
• Ge ett nationellt erkännande för det ovärderliga stöd som tillhandahålls av redan
befintliga sörjandestödsgrupper.
• Stärka förtroendet bland användare och finansiärer genom att sörjandestödet
arbetar efter en nationell standard.
Riktlinjer för sörjandestödet från "UK Council" (Rådet i U.K.)
Denna organisation upprättades för att föra arbetet med Riktlinjerna framåt. Riktlinjerna
är inte huggna i sten för att gälla för all framtid; därför kommer Rådet att svara för att de
ständigt revideras i takt med att nya erfarenheter görs.
Medlemskap i Rådet kommer från
• de fyra organisationerna i "The National Bereavement Consortium"
• enskilda och serviceorganisationer från hela U.K.
• personer med uttalat intresse för sörjandestöd i U.K.
En viktig utgångspunkt är att alla medlemmar i Rådet skriver under på de etiska
principerna.
Innan man vet
Elisabet O Klint
(2020)
"Jag drömmer om att jag pratar för oss båda och vi lyssnar tillsammans på det jag berättar. Då ser jag honom le, skratta och gestikulera för att visa sina känslor. Hade jag kunnat göra honom lyckligare, gladare och tryggare? Eller, var han kanske lycklig, och inom sig tacksam, att jag fanns där hela tiden? Vilka av hans handlingar var egentligen hans, och vilka var ett resultat av sjukdom?"
Innan man vet är en finstämd skildring av en kvinnas dilemma i kärlek och i sorg. I denna självbiografiska berättelse får vi följa Elisabet O Klint genom dagboksanteckningar som gestaltar livet såsom det tedde sig. I hopp om att förstå, och förbättra. Gripande åskådliggör hon den livssituation som uppstod när hennes man drabbades av ALS och frontallobsdemens, två livshotande sjukdomar utan botemedel.
Inner power, physical strength and existential well-being in daily life: relatives' experiences of receiving soft tissue massage in palliative home care
Cronfalk, B. S., Strang, P., & Ternestedt, B.
(2009)
Insatser för personer med psykiska funktionsnedsättningar. Kommunernas användning av stimulansbidragen 2007-2010
Socialstyrelsen
(2011)
Rättstillämpningen
Den nya vårdformen som trädde i kraft den 1 september 2008 tycks fungera bättre för rättspsykiatrins patienter än för patienter inom den psykiatriska tvångsvården. Patienter inom rättspsykiatrin har längre vårdtider och får insatser som är mer anpassade efter individuella behov. Förutsättningarna för att slussa ut personer till öppen rättspsykiatrisk vård är på så sätt bättre jämfört med dem som förs över till öppen psykiatrisk tvångsvård. De sistnämnda patienterna har i regel kortare vårdtid än fyra veckor och behandlas för en psykiatrisk diagnos i ett akut skede. Behandlingsinsatserna innebär oftast att symtom medicineras.
Chefsöverläkare och annan personal verksamma inom sluten psykiatrisk tvångsvård har relativt kort tid på sig för att bedöma vad som är adekvata insatser för en patient som ska föras över till öppen psykiatrisk tvångsvård och för att upprätta en samordnad vårdplan. I nästan hälften av de fall när patienter överförts till öppen psykiatrisk tvångsvård har kommunerna saknat kännedom om detta. Det beror i regel på att chefsöverläkaren bedömt att patienterna enbart behövt insatser från landstinget med krav på medicinering och regelbunden kontakt med den öppna psykiatriska mottagningen. Någon med kommunen samordnad vårdplan har då inte upprättats. Socialstyrelsen avser att uppmärksamma den sittande Psykiatriutredningen (S2008:98) på de brister i lagstiftningens tillämpning som myndigheten sett när det gäller öppen psykiatrisk tvångsvård.
Otillräcklig kunskap om effekten för den enskilde
En uppföljning av det slag som nu gjorts ger föga kunskap om vårdformens effekter för den enskilde, dvs. om den motsvarar den enskildes förväntningar och bidrar till ökad livskvalitet. Återkommande uppföljningar om hur människor med psykiska funktionsnedsättningar bor och om de har meningsfull sysselsättning saknas. Det saknas också undersökningar om hur de anser sig bemötta inom såväl vård och omsorg som samhället i övrigt tillhandahåller. Socialstyrelsen anser att bättre och mer ingående kunskap om livssituationen för personer med psykiska funktionsnedsättningar förutsätter en intensifierad metodutveckling för att ta fram, bearbeta och analysera data om socialtjänstens effekter för klienter.
Statsbidraget och kommunernas arbete
Socialstyrelsen har under åren 2007 - 2010 förmedlat sammanlagt 520 miljoner kronor i statsbidrag till kommunerna för att stimulera dem att förbättra sina sociala insatser för de personer med psykisk funktionsnedsättning som vårdas i öppen tvångsvård.
Förändringsarbete tar tid att förankra och genomföra om effekten ska bli varaktig. Detta framgår av det material Socialstyrelsen haft tillgång till under arbetet med uppföljningen. Kommunerna har också olika förutsättningar att använda statsbidraget för de ändamål för vilka det är avsett. Det handlar t.ex. om kommunernas kännedom om vilka insatser som fungerar och som motsvarar de enskildas behov och vilka förbättringsområden som bör prioriteras och som det finns beredskap för.
Mål och måluppfyllelse
Regeringen har satt upp fem mål för statsbidraget.
Mål 1.
Det ska finnas effektiva och formaliserade strukturer för samarbete mellan kommun och landsting kring personer som varit föremål för åtgärder inom den psykiatriska tvångsvården.
Sedan januari 2010 då bestämmelsen om att kommunen ska ingå formaliserade, övergripande överenskommelser med landstinget om samarbete i fråga om personer med psykisk funktionsnedsättning har över hälften av kommunerna träffat sådana överenskommelser med respektive landsting. Socialstyrelsen anser att samverkan mellan kommuner och landsting utvecklas positivt och bedömer att mål 1 har goda förutsättningar att uppnås när det gäller formaliserade och övergripande strukturer för samarbete. Men för att målet ska vara uppnått ska samverkansstrukturerna också vara effektiva. Kommuner och landsting behöver fortsätta arbetet med gemensamma policydokument, avtal och överenskommelser.
Mål 2.
Det ska finnas kunskap om de behov personer med psykisk funktionsnedsättning har så att utbyggnaden av verksamheter ges förutsättningar att motsvara målgruppens behov av stödinsatser.
Ett fåtal kommuner har inventerat målgruppen och dess behov på ett heltäckande sätt. De flesta kommuner och stadsdelar har på ett tidigt stadium undersökt hur många personer som kan förväntas bli föremål för den nya vårdformen. Det är emellertid betydligt fler personer som förts över till öppen vårdform än vad kommunerna känt till. Socialstyrelsen anser att kommuner i samverkan med respektive landsting kontinuerligt behöver inventera målgruppen och dess behov av stödinsatser för att mål 2 ska uppnås.
Mål 3.
Det ska finnas ett varierat utbud av flexibla och individanpassade lösningar (t.ex. boende och sysselsättning) som kan tillgodose behovet för de personer som får den nya vårdformen.
Kommuner och stadsdelar har uppmärksammat i allt högre grad boende och sysselsättningsområdet. I vilken utsträckning målet om flexibla och individanpassade lösningar är uppfyllt är svårt att bedöma. I vilken mån mål 3 uppnås får bedömas utifrån alla de satsningar som gjorts och görs inom psykiatriområdet.
Mål 4.
Personalen ska ha tillgång till relevant vägledning, handledning och fortbildning
Kommunerna har i hög grad satsat på kompetensutveckling för att utveckla sina arbetsmetoder och för att kunna tillgodose enskildas behov på ett professionellt sätt. Socialstyrelsen bedömer att mål 4 har goda förutsättningar att uppnås.
Mål 5.
Återintagningar ska inte bero på att kommunerna har otillräckliga stödinsatser
Mål 5 är problematiskt att följa upp då det oftast är flera, och ofta komplexa orsaker som ligger till grund för återintagningar. Kommuner och landsting är också i vissa avseenden oeniga om både hur bestämmelserna om överföring till öppen psykiatrisk tvångsvård ska tolkas och när återintagningar ska ske. Socialstyrelsen anser att det är svårt att bedöma om återintagningarna endast är en följd av kommunernas bristande sociala insatser. Det är oftast flera aktörer inblandade, förutom kommunen, öppenvårdsmottagningar, sjukvårdsinrättning och den enskilde samt i vissa fall också beroendemottagningar.
Insatser mot psykiska problem hos barn och ungdomar. Statens offentliga utredningar
SOU 1998:31
(1998)
Utredningen har anlagt ett folkhälsoperspektiv på barns och ungdomars psykiska hälsa. En grundläggande funktion för varje samhälle är att skapa gynnsamma förhållanden för det uppväxande släktet. Föräldrarna ansvarar för att barnet får sina behov av omvårdnad, trygghet och god fostran tillgodosedda. Samhällets stöd och vård skall komplettera föräldrarnas insatser, och ske i samspel med dem. Vi konstaterar att insatser utvecklas. Vi fokuserar två generella verksamheter som har stor betydelse och potential i folkhälsoarbetet: mödra- och barnhälsovården samt skolans elevvård.
Insatser till barn och unga som lever i familjer med missbruks- eller beroendeproblem: en kunskapsöversikt
Rehnman, Jenny & Andrée Löfholm, Cecilia
(2009)
Resultatet visar att det för närvarande inte finns något tillförlitligt underlag för insatser till barn och unga med föräldrar som har missbruksproblem. När det gäller insatser till barn och unga med föräldrar som har någon psykisk funktionsnedsättning saknas också vetenskapligt stöd för att uttala sig om hur effektiva insatserna är. Det finns dock en utvärdering som bedöms ha medelgod tillförlitlighet, och den gäller insatsen Beardslees familjeintervention som är riktad till familjer där någon av föräldrarna har en depression. Utvärderingen av Beardslees familjeintervention visade att insatsen inte var mer effektiv än den föreläsningsinsats som den jämfördes med.
Effekterna av familjeinterventionen eller föreläsningsinsatsen har emellertid inte satts i relation till en icke-insats (placebo eller väntelista) eller någon annan insats som kan antas vara standardbehandling, och därför går det för närvarade inte att uttala sig om insatsens effektivitet.
Resultatet från översikten ska inte tolkas som att det inte finns några insatser som är verksamma och som kan ge stöd till barn och unga som lever i familjer med missbruksproblem eller med förälder som har en psykisk funktionsnedsättning. Problemet är att det i dagsläget inte går att värdera om de insatser som förekommer har en positiv effekt. Därför behövs både svenska utvärderingar och lokala uppföljningar av de befintliga insatserna genomföras.
Insatser år 2010 för vuxna personer med missbruks- och beroendeproblem och för övriga vuxna
Socialstyrelsen
(2011)
I denna rapport redovisas statistik över socialtjänstens insatser för vuxna med missbruks- och beroendeproblem samt övriga vuxna år 2010. Statistiken är en del av Sveriges officiella statistik (SOS). Den innehåller uppgifter om de insatser som är individuellt behovsprövade och som beslutats enligt socialtjänstlagen (2001:453), i fortsättningen förkortad SoL, eller lagen om vård av missbrukare i vissa fall (1988:870), i fortsättningen förkortad LVM. De insatser socialtjänsten ger utan biståndsbeslut ingår inte.
Vuxna med missbruks- och beroendeproblem
Som vuxna räknas i denna statistik huvudsakligen personer som är 21 år eller äldre. I statistiken redovisas de personer som den 1 november eller någon gång under år 2010 hade något beslut om insatser enligt SoL och LVM på grund av problem med sitt missbruk av alkohol, narkotika, läkemedel eller lösningsmedel.
Av de vuxna personer med missbruks- och beroendeproblem som hade pågående insatser den 1 november 2010 hade knappt 6 200 personer bistånd som avser boende (samma nivå som 2009) och cirka 11 700 personer individuellt behovsprövade öppna insatser (även det på ungefär samma nivå som år 2009).
Knappt 2 900 personer hade insatser inom heldygnsvård den 1 november 2010, vilket var en ökning med 8 procent jämfört med antalet den 1 november 2009. Av dessa personer vårdades 90 procent på frivillig grund.
Antalet personer med frivillig institutionsvård (enligt SoL) den 1 november 2010 var 8 procent fler i jämförelse med föregående år, medan antalet som har vårdats i familjehem (enligt SoL och LVM) minskade med 2 procent.
Antalet tvångsvårdade personer på institution (enligt LVM) den 1 november 2010 uppgick till 285, vilket innebär att antalet tvångsvårdade har ökat med 18 procent jämfört med året innan.
Ungefär 23 procent av de vuxna med missbruks- och beroendeproblem som mottog bistånd som avser boende den 1 november 2010 var kvinnor. Inom de individuellt behovsprövade öppna insatserna var andelen kvinnor drygt 30 procent och inom heldygnsvården drygt 25 procent. Andelen kvinnor som tvångsvårdades enligt LVM den 1 november 2010 var 36 procent.
Övriga vuxna
Gruppen övriga vuxna definierar Socialstyrelsen som personer 21 år eller äldre med problem som inte är relaterade till eget missbruk av alkohol, narkotika, läkemedel, lösningsmedel eller kombinationer av dessa. I denna statistik redovisas till exempel de insatser som ges enligt SoL på grund av spelmissbruk, hemlöshet, behov av stöd i föräldrarollen samt på grund av en anhörigs missbruk och insatser riktade till att hjälpa våldsoffer.
Den 1 november 2010 fick drygt 9 200 personer av kategorin övriga vuxna bistånd som avsåg boende, vilket är cirka 5 procent fler än 1 november 2009.
Cirka 6 900 personer fick individuellt behovsprövade öppna insatser den 1 november 2010, vilket innebär en ökning med 2 procent i jämförelse med 1 november 2009.
Antalet som vistades frivilligt på någon institution den 1 november 2010 uppgick till 330 personer. Antalet har inte förändrats sedan 2009.
81 personer hade beslut om familjehemsvård den 1 november 2010, även det på samma nivå som 2009.
Insatser år 2011 för vuxna personer med missbruks- och beroendeproblem och för övriga vuxna
Socialstyrelsen
(2012)
Institutionella samtal – Struktur, moral och rationalitet. Några synpunkter på värdet av samtalsanalys för att studera mötet mellan experter och lekmän
Adelswärd, V.
(1995)
Integrated programs for mothers with substance abuse issues and their children: A systematic review of studies reporting on child outcomes
Niccols A, Milligan K, Smith A, Sword W, Thabane L, Henderson J.
(2012)
BACKGROUND:
Integrated treatment programs (those that include on-site pregnancy-, parenting-, or child-related services with addiction services) were developed to break the intergenerational cycle of addiction, potential child maltreatment, and poor outcomes for children.
OBJECTIVES:
To examine the impact and effects of integrated programs for women with substance abuse issues and their children, we performed a systematic review of studies published from 1990 to 2011.
METHODS:
Literature search strategies included online bibliographic database searches, checking printed sources, and requests to researchers. Studies were included if all participants were mothers with substance abuse problems at baseline; the treatment program included at least 1 specific substance use treatment and at least 1 parenting or child treatment service; the study design was randomized, quasi-experimental, or cohort; and there were quantitative data on child outcomes. We summarized data on child development, growth, and emotional and behavioral outcomes.
RESULTS:
Thirteen studies (2 randomized trials, 3 quasi-experimental studies, 8 cohort studies; N=775 children) were included in the review. Most studies using pre-post design indicated improvements in child development (with small to large effects, ds=0.007-1.132) and emotional and behavioral functioning (with most available effect sizes being large, ds=0.652-1.132). Comparison group studies revealed higher scores for infants of women in integrated programs than those not in treatment, with regard to development and most growth parameters (length, weight, and head circumference; with all available effect sizes being large, ds=1.16-2.48). In studies comparing integrated to non-integrated programs, most improvements in emotional and behavioral functioning favored integrated programs and, where available, most effect sizes indicated that this advantage was small (ds=0.22-0.45).
CONCLUSIONS:
Available evidence supports integrated programs, as findings suggest that they are associated with improvements in child development, growth, and emotional and behavioral functioning. More research is required comparing integrated to non-integrated programs. This review highlights the need for improved methodology, study quality, and reporting to improve our understanding of how best to meet the needs of children of women with substance abuse issues.
Integrated programs for mothers with substance abuse issues and their children: A systematic review of studies reporting on child outcomes.
Niccols A, Milligan K, Smith A, Sword W, Thabane L, Henderson J.
(2012)
BACKGROUND:
Integrated treatment programs (those that include on-site pregnancy-, parenting-, or child-related services with addiction services) were developed to break the intergenerational cycle of addiction, potential child maltreatment, and poor outcomes for children.
OBJECTIVES:
To examine the impact and effects of integrated programs for women with substance abuse issues and their children, we performed a systematic review of studies published from 1990 to 2011.
METHODS:
Literature search strategies included online bibliographic database searches, checking printed sources, and requests to researchers. Studies were included if all participants were mothers with substance abuse problems at baseline; the treatment program included at least 1 specific substance use treatment and at least 1 parenting or child treatment service; the study design was randomized, quasi-experimental, or cohort; and there were quantitative data on child outcomes. We summarized data on child development, growth, and emotional and behavioral outcomes.
RESULTS:
Thirteen studies (2 randomized trials, 3 quasi-experimental studies, 8 cohort studies; N=775 children) were included in the review. Most studies using pre-post design indicated improvements in child development (with small to large effects, ds=0.007-1.132) and emotional and behavioral functioning (with most available effect sizes being large, ds=0.652-1.132). Comparison group studies revealed higher scores for infants of women in integrated programs than those not in treatment, with regard to development and most growth parameters (length, weight, and head circumference; with all available effect sizes being large, ds=1.16-2.48). In studies comparing integrated to non-integrated programs, most improvements in emotional and behavioral functioning favored integrated programs and, where available, most effect sizes indicated that this advantage was small (ds=0.22-0.45).
CONCLUSIONS:
Available evidence supports integrated programs, as findings suggest that they are associated with improvements in child development, growth, and emotional and behavioral functioning. More research is required comparing integrated to non-integrated programs. This review highlights the need for improved methodology, study quality, and reporting to improve our understanding of how best to meet the needs of children of women with substance abuse issues.
Integrating Family Caregivers into Palliative Oncology Care Using the Self- and Family Management Approach
Schulman-Green D., Feder S.
(2018)
Integrating Family Caregivers into Palliative Oncology Care Using the Self- and
Family Management Approach. Schulman-Green D, Feder S.
OBJECTIVE: To describe the integration of family caregivers into palliative
oncology care using the Self- and Family Management Framework.
DATA SOURCES: Peer-reviewed journal articles.
CONCLUSION: The role of family caregivers in palliative oncology includes
focusing on illness needs, activating resources, and living with cancer. Several
factors may serve as facilitators of or barriers to these activities. A growing
number of interventions support family caregivers' involvement in palliative
oncology care.
IMPLICATIONS FOR NURSING PRACTICE: Nurses should identify who the family
caregiver is, confirm ability and willingness, discuss patients' and family
caregivers' goals for cancer care, activate resources, and promote ongoing
communication to support changing needs.
Integration. En beskrivning av läget i Sverige. Rapport 1
Statistiska centralbyrån
(2008)
Integrationsarbete i civilsamhället: unga och äldre i blickfånget
Forssell, E. and M. Ingemarson
(2008)
Intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients. Controlled clinical trial with follow-up assessment six months after discharge.
Gräsel E, Biehler J, Schmidt R, Schupp W.
(2005)
OBJECTIVE:
An intensified transition concept between neurological inpatient rehabilitation and home care was investigated for effects on the functional status of stroke patients and the physical and emotional health of their carers.
DESIGN:
Controlled clinical trial allocating patients to intervention group (intensified transition on ward II) or control group (standard transition on ward I); patients were allocated to whichever ward had a vacancy. Follow-up assessment was carried out six months after discharge.
SUBJECTS:
Seventy-one patients and their family carers were included, of which nine cases dropped out. Therefore 62 stroke patients with persisting disability and their family carers were available for assessment at follow-up--33 patients in the intervention group, 29 patients in the control group.
INTERVENTION:
The intensified transition concept consisted of therapeutic weekend care, bedside teaching and structured information for relatives during the second phase of the rehabilitation.
MAIN MEASURES:
Patients were assessed with the Barthel Index, Functional Independence Measure, Ashworth Spastic Scale, Frenchay Arm Test, and Timed Up and Go Test. The carers completed SF-36, and were assessed using the Giessen Symptom List, Depression Scale and Burden Scale for Family Caregivers.
RESULTS:
The intensified transition did not lead to significant change in the functional status of the patients or in the physical and emotional health of the family carers. Within the first four weeks after discharge, the patients in the intervention group had fewer new illnesses. In the observation period the use of outpatient care services was more frequent in the intervention group than in the control group.
CONCLUSION:
Even though there are few differences of moderate intensity between the two groups the intensified transition programme does not affect either the functional status of the stroke patients or the health of the carers.
Intensivvårdsdagbok i Sverige: betydelse och tillämpning
Johansson Maria
(2019)
Avhandling
Syfte
Avhandlingens övergripande syfte är att undersöka hur intensivvårdsdagboken upplevs av närstående och vårdpersonal inom intensivvård samt att bidra till utvecklingen av nationella riktlinjer avseende dagbokens utformning, innehåll och tillämpning.
Delsyften
I Att undersöka hur närstående upplever en intensivvårdsdagbok, när en
sjuk familjemedlem vårdas på IVA.
II Att undersöka hur närstående upplever en intensivvårdsdagbok, när den
sjuke familjemedlemmen inte överlever vistelsen på IVA.
III Att undersöka hur vårdpersonalen upplever användandet av
intensivvårdsdagbok.
IV Att undersöka tillämpningen av intensivvårdsdagbok på olika
intensivvårdsavdelningar i Sverige samt bidra till riktlinjer när det gäller
dagbokens utformning, innehåll och användning.
Abstract [en]
Aim: The overall aim of the thesis was to explore how the Intensive Care Unit (ICU) diary was experienced by family members, family members of non-survivors and nursing staff in the ICU setting, thereby contributing to the development of national clinical practice guidelines regarding the structure, content and use of the ICU diary.
Methods: A qualitative design was employed for all four studies: a hermeneutic approach was adopted in studies I and II, whilst a qualitative descriptive design with the use of focus groups interviews was chosen in study III. An Instrumental Multiple Case Study design was carried out in study IV.
Main Findings: The diary symbolised the maintenance of relationships with the patients and was a substitute for the usual opportunities for communication. The diary was instrumental in meeting the needs of the majority of participant family members. The diary provided the means to be present at the patient's bedside, to feel involved in caregiving, to maintain hope and to relay relevant information. If the critically ill family member did not survive the stay in the ICU, the diary acted as a form of bereavement support by processing the death of the patient. Nevertheless, some family members found the diary too public an arena to write in as the diary entries indicated visiting patterns which in turn provoke feelings of guilt when the visits were infrequent. Further, not knowing what to write was another source of pressure.
Nursing staff experienced that writing diaries often felt meaningful and led to an increased motivation and engagement in patient care and family support. They expressed that they felt they did something good for the patient and family members. Thus, the diary can be seen as a way to promote person-centred care, where family members were offered to participate in the care. However, in the absence of guidelines or clear guidelines about the use of an ICU diary, then not many patients actually received a diary.
Conclusions: Practice guidelines concerning ICU diaries would help to ensure the more widespread and consistent use of diaries for all ICU patients. As family members may benefit from the diary, even if the patient may not always be able to do so. The ICU diary can be seen as a tool to help promote person-centred care by directly involving family members and providing a human touch, thus helping to counterbalance the highly technical physical environment of ICU.
Intentional communication acts expressed by children with severe disabilities in high-rate contexts
Bruce, S. M., & Vargas, C.
(2007)
The purpose of this study was to identify the rates of communication expressed by 17 children with severe disabilities in high-rate school contexts while piloting a new coding system for intentional communication acts (ICAs). The following nine characteristics were used when coding ICAs expressed in both child initiated and adult initiated communicative interactions: joint attention, form of communication, use of pause, persistence, repetition, repair, expression of pleasure or displeasure when understood or misunderstood, expression of pleasure or displeasure to communication partner's message, and evidence of comprehension. Children communicated 1.7 – 8.0 ICAs per minute in the highest rate contexts. Nine of the 34 high-rate contexts were speech clinical sessions, six were activities that included eating, 30 were familiar activities, and four were novel activities.
Interaction between the teacher and the congenitally deafblind child
Vervloed MPJ, Van Dijk RJM, Knoors H, Van Dijk JPM.
(2006)
EMPIRICAL DATA on the development of interaction, communication, and language in deafblind children is very rare. To fill this gap, a case study was conducted in which the interaction between a teacher and a deafblind boy age 3 years 4 months was analyzed. Sequential analysis of their interaction confirmed some general clinical impressions about interaction with deafblind children, and provided the basis for suggestions on how the interaction pattern might be changed.
Interaction between voluntary and statutory social service provision: A matter of welfare pluralism, substitution or complementarity.
Dahlberg, L
(2005)
Interaction, inclusion and students with profound and multiple disabilities: Towards an agenda for research and practice
Arthur-Kelly M, Foreman P, Bennett D, Pascoe S.
(2008)
The needs of students with profound and multiple disabilities (PMD) have received more attention in the educational research and best practice literature over the past decade, especially in relation to the importance of maximising their social and communicative engagement. However, perhaps as a function of their low incidence rate and resultant difficulties in obtaining research funding, there appears to be little in the way of a coherent vision for research in the international literature. In this paper we argue the need for a systematic programme of research into the nature of learning processes and outcomes for members of this group. Several issues emerge from a review of selected literature and from some recent observational data and descriptive case studies collected in special and inclusive classrooms. First, there is the importance of identifying ways of better understanding the complex experiences of members of this population, with particular attention to the ongoing contribution of behaviour state assessment as a means of measuring individual alertness and responsiveness. We argue that improved uptake of this approach will do much to advance our knowledge of life quality for this population and assist in more fully evaluating the effectiveness of educational interventions. Second, we explore the potential of social and communicative engagement in a variety of settings as a means of enhancing learning and participation in this group. We suggest that interpersonal variables are the key to improvements in educational support for this vulnerable group. Potential directions in research and practice are explored. © 2008 The Authors.
Ger samverkan bättre vård och omsorg till äldre?
Länsstyrelsen Kalmar län
(2001)
Into adulthood: a follow-up study of 718 youths who were placed in out-of-home care during their teens
Vinnerljung B. & Sallnäs M.
(2008)
ABSTRACT In this study, national register data were used to analyse long-term outcomes at age 25 for around 700 Swedish young people placed in out-of-home care during their teens. The sample consisted of 70% of all 13- to 16-year olds who entered out-of-home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental-health problems, teenage parenthood, self-support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non-care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long-term prognosis.
Into adulthood: a follow‐up study of 718 young people who were placed in out‐of‐home care during their teens - ResearchGate. Available from: http://www.researchgate.net/publication/230164185_Into_adulthood_a_followup_study_of_718_young_people_who_were_placed_in_outofhome_care_during_their_teens [accessed Aug 5, 2015].
Introduction to the international classification of functioning, disability and health.
Rauch A, Lückenkemper M, Cieza A.
(2012)
Ghosts in the nursery. A psychoanalytic approach to the problems of impaired infant-mother relationships
FRAIBERG, S., ADELSON, E. & SHAPIRO, V.
(1975)
Invandrarskap, äldrevård och omsorg
Torres, S. and F. Magnússon
(2010)
Investera i närstående
Andrén, S.
(2006)
Investera i närstående
Andrén, S.
(2006)
Investera i närstående
Andrén, S
(2006)
IQ, scholastic performance and behaviour in sibs raised in contrasting environments.
Dumaret A
(1985)
Medium- and long-term effects of types of placement of the offspring of lower class families have been studied. The progeny of 28 mothers was reconstituted. The subjects were divided into three groups: 35 children abandoned and adopted early in privileged environments (A), 46 'biological mother-reared' children remaining in their disadvantaged social environments (B) and 21 children raised in institutions or foster homes (C). Analyses focused on IQ, scholastic performance and behaviour. Results show that the social environment has important effects: the differences between the three groups are very significant. For A and B groups tested in the schools, comparisons were made with the classmates. For the C group the effects of long-term emotional deprivation are superimposed on the effects of the social environment.
Is disclosure therapeutic for children following exposure to traumatic violence?
Graham-Bermann, S. A., Kulkarni, M. R., & Kanukollu, S. N.
(2011)
Trauma theory suggests that to recover from exposure to traumatic events, such as exposure to violence, therapeutic interventions should include opportunities to disclose and to process the fearful and stressful events. Yet little is known about the circumstances that foster disclosure of such information in therapeutic environments by children and related mental health outcomes for those children. In this study, the process of disclosure was examined among children ages 6 to 12 years (N = 121) in a community-based intervention program for children exposed to intimate partner violence (IPV). Therapists documented children's spontaneous disclosure in their group. Mothers and children completed demographic and standardized attitudinal and mental health questionnaires. Fifty-two percent of children spontaneously disclosed during therapy. Child ethnicity, harm to the child, internalizing behavioral adjustment problems, and engagement in therapy predicted disclosure. Disclosure within the group was associated with gains for individual children in internalizing behavioral adjustment problems and improvement in attitudes and beliefs concerning the acceptability of violence.
Is It Racism? Skepticism and Resistance Toward Ethnic Minority Care Workers Among Older Care Recipients
Jonson, H.
(2007)
Is there intergenerational transmission of trauma? The case of combat veterans' children
Dekel, R., & Goldblatt, H
(2008)
This article is a review of the literature on intergenerational transmission of posttraumatic stress disorder (PTSD) from fathers to sons in families of war veterans. The review addresses several questions: (1) Which fathers have a greater tendency to transmit their distress to their offspring? (2) What is transmitted from father to child? (3) How is the distress transmitted and through which mechanisms? And finally, (4) Which children are more vulnerable to the transmission of PTSD distress in the family? Whereas the existing literature deals mainly with fathers' PTSD as a risk for increased emotional and behavior problems among the children, this review also highlights the current paucity of knowledge regarding family members and extrafamilial systems that may contribute to intergenerational transmission of PTSD or to its moderation. Little is also known about resilience and strengths that may mitigate or prevent the risk of intergenerational transmission of trauma.
Israeli preschoolers under Scuds: a 30-month follow-up
Laor, N., Wolmer, L., Mayes, L. C., Gershon, A., Weizman, R., & Cohen, D.
(1997)
OBJECTIVE:
Longitudinal studies of children exposed to traumatic events show contrasting findings regarding their symptomatic change over time. The present study reports on a 30-month follow-up of preschool children and their mothers who had been exposed to Scud missile attacks.
METHOD:
Families displaced during the Gulf War after their homes had been damaged by the missile attack and a control group whose homes remained intact were interviewed about posttraumatic and general symptomatology, the mothers' capacity to control images, and the children's adaptive behavior.
RESULTS:
Stress symptoms decreased in the displaced children but not in their mothers. Both reported more posttraumatic symptoms than did the control group. No differences in the children's adaptive behavior were observed. Posttraumatic symptoms of the displaced children correlated with the mothers' avoidant symptoms. The mothers' avoidant symptoms at follow-up were statistically explained by the mothers' symptoms during the war and their capacity for image control, the duration of displacement, and the cohesion of the family.
CONCLUSIONS:
The maternal stress-buffering capacity constitutes a central element in children's protective matrix and is crucial in minimizing long-term internal suffering of traumatized preschool children.
Issues of social support: The family and home care
Silverstone B, Horowitz A.
(1987)
Stroke is one of the oldest but least understood diseases, and it is one of the major public health problems facing the elderly. Recent epidemiological investigations have found that the incidence of stroke has been underestimated by about 50%, and that the burden of disease is highest in minority populations. Recent clinical and basic neuroscience research indicates that stroke is neither unpredictable nor irreversible. Many risk factors for stroke are readily identifiable, and evidence-based treatment may be used to reduce the likelihood of stroke among those at risk. Rapid diagnosis and evaluation of stroke and transient ischemic attack and their treatment, including surgery, anticoagulation, antiplatelet and other medical therapies, reduce the chance of recurrence. More aggressive treatment of blood pressure, even among patients who are not necessarily hypertensive, may also reduce the risk of future strokes. Once ischemic stroke has occurred, emergent therapy using thrombolysis may significantly reduce disability, even among the elderly. This review presents an update on definitions of stroke and its subtypes, stroke epidemiology, and the results of recent studies of stroke prevention and acute treatment.
IT - verktyget för högre kvalitet och bättre samverkan inom vård och omsorg : Intervjuer med projektledare och experter inför avslutningen av ITHS 2-programmet.
Hjördisdotter von Uexküll, K., Håkansson, P., & Myhrström, K.
(2005)
'It has been a good growing experience for me': Growth experiences among African American youth coping with parental cancer
Kissil, K., Niño, A., Jacobs, S., Davey, M., & Tubbs, C. Y.
(2010)
This qualitative focus group study describes posttraumatic growth experiences of African American adolescents currently coping with parental breast cancer. Twelve adolescents participated in three focus groups assessing their experiences with parental cancer. Spontaneous accounts of posttraumatic growth were reported by all participants. A content analysis revealed reports in four of the five domains of posttraumatic growth identified by Tedeschi and Calhoun (1996) which included: greater appreciation for life, enhanced interpersonal relationships, increased sense of personal strengths, and changed priorities. An additional domain, change in health behaviors and attitudes, also emerged. These findings add important knowledge to the developing field of research in posttraumatic growth in populations where available research is scarce, especially among adolescents and racial minorities.
IT i hälso- och sjukvården : Kan IT göra vården bättre och billigare? Hur? Och hur långt har vi kommit i Sverige : Rapport nr 4 från ett interaktivt seminarium inom ITHS-programmet.
Vårdalstiftelsen
(2003)
IT- verktyget för högre kvalitet och bättre samverkan inom vård och omsorg : Intervjuer med projektledare och experter inför avslutningen av ITHS 2-programmet.
Hjördisdotter von Uexküll, K., Håkansson, P., & Myhrström, K.
(2005)
IT-stöd för vård i hemmiljö : Exempel från Svenska kommuner (Carelink rapport ).
Carelink
(2003)
Jag finns också! : om att vara syskon till en bror eller syster med svår sjukdom eller funktionshinder
Allmänna barnhuset
(2009)
Jag har en sjukdom men jag är inte sjuk - tio år senare.
Christina Renlund, Mustafa Can, Thomas Sejersen
(2015)
Hur är det att var barn och ha en mamma med stark hjärna och hjärta, men muskler som är svaga? Vilka frågor och farhågor är det som dyker upp i ett barns funderingar? Och hur kan vi hjälpa och stödja ett barn att förstå? Vi får i ett kapitel i denna bok ta del av hur Liam 6 år, hans familj samt psykolog Christina Renlund finner sätt att hantera situationen. Liam berättar om sina funderingar och rädslor medan mamma Ninnie berättar om sina. Vad är kopplat till hennes sjukdom och vad tillhör det som Liam i den ålder han befinner sig i, ändå skulle fundera över. Efterhand som Liam växer och hamnar i nya situationer dyker nya utmaningar upp. Vi får bland annat ta del av hur det är när Liam ska börja skolan och Ninnie väljer att en dag komma med till skolan och berättar om sin muskelsjukdom för barnen, och hur stolt Liam är över sin mamma!
Christina Renlund lotsar oss i egenskap av psykolog, med mångårig erfarenhet av att träffa familjer i liknande situationer, genom olika utmaningar Liam och hans familj har att hantera. Samtalen och funderingarna varvas med råd och tydliggörande. Om vikten av att tidigt prata med barnen och rusta dem med kunskap och svar att använda när frågorna kommer och på det viset göra barnen tryggare.
Jag oxå! Dödsviktigt
Mia Berg, Anna Lindholm (form)
(2012)
En mamma eller pappa dör och halva världen försvinner. Trots det går det att växa upp och fortsätta leva ett helt liv. Här möter du människor du känner igen som klarat det och hittat glädjen och uppfyllt drömmar.
Mediamannen Peter Settman, coachen och författaren Elizabeth Gummesson, sångaren Patrik Isaksson och musikern Marina Schiptjenko. Alla förlorade de en förälder som barn och här berättar de sina historier.
Det är rakt på sak om dödsbesked, förtvivlan och saknad. Men också fullt med hopp, livsglädje och bilder av den där särskilda sortens styrka och beslutsamhet. Den som kommer sen, när man inser att man klarar av även det som är riktigt svårt.
Dödsviktigt är till dig som förlorat din mamma eller pappa. Du ska veta att det finns fler som tänker och känner som du.
Dödsviktigt är till dig som står bredvid och inte vet vad du ska göra. Du får tips om vad du kan säga och hjälp att förstå vad döden gör med dem som blir kvar.
Dödsviktigt är också till alla er andra som någon gång sagt orden "om jag dör". Varje år förlorar över 3000 barn i Sverige en förälder och de lär sig tidigt att vi inte lever för alltid. Döden är en del av livet, allas liv. Och den blir lättare att leva med om vi gör det tillsammans. Därför är det dödsviktigt att prata om döden.
Jag tar en dag i sänder - om ålderspensionerade anhörigvårdare
Mossberg Sand, A.-B.
(1996)
Omsorgens skiftningar - Begreppet, vardagen, politiken, forskningen. R. Eliasson
Jag vet jeg er annerledes – men ikke bestandig. En antropologisk studie av hverdagslivet til fem personer med psykisk utviklingshemming
Sundet, Marit
(1997)
Jag vill ni hämtar min mamma … Villkor för familjearbete för ungdomar inom institutionsvården
Kesthely, Martha
(2006)
Avhandling vid pedagogiska institutionen
Jag vill säga något
Helena Alvesalo
(2006)
Filmen vänder sig till den som vill inspireras till att använda TAKK, tecken som alternativ och kompletterande kommunikation. Vi får följa fyra barn i deras vardag. De är i olika åldrar och i olika behov av att kunna kommunicera. Gemensamt är att de och deras omgivning använder TAKK varje dag, i alla sammanhang.
Hannahs mamma får en fobi
Alphonse Elisabet
(2011)
text och illustrationer: Elisabet Alphonse
barn/ungdom
Boken handlar om Hannahs mamma och hur en getingfobi kan påverka en förälders vardag.
Har svenska pensionärer något val när det gäller anhörigvård?
Sand, A-B.
(2006)
Harmonisk bild av Sverige ifrågasätts : Tillit är kittet för ett välfungerande samhälle ; internationellt sett är Sverige känt för en hög grad av tillit, en bild som nu utmanas av forskare vid Ersta Sköndal Högskola
Forssell, E.
(2006)
Key worker services for disabled children: the views of staff
Greco, V., Sloper, P., Webb, R., & Beecham, J.
(2006)
Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N = 50), managers (N = 7) and members of multi-agency steering groups (N = 32) from seven key worker services in England and Wales. A response rate of 62% was obtained. Major themes emerging from the interviews were identified, a coding framework was agreed upon, and data were coded using the qualitative data analysis programme Max QDA. Results showed that although the basic aims of the services were the same, they varied widely in the key workers' understanding of their role, the amount of training and support available to key workers, management and multi-agency involvement. These factors were important in staff's views of the services and inform recommendations for models of service.
Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families?
Sloper, P., Greco, V., Beecham, J., & Webb, R.
(2006)
Background Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families.
Methods A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need).
Results The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need.
Conclusions Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.
Klassifikation av funktionstillstånd, funktionshinder och hälsa
Socialstyrelsen
(2003)
Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review.
Docherty, A., Owens, A., Asadi-Lari, M., Petchey , R., Williams, J. & Carter , Y. H.
(2008)
Knowledge of Alzheimer's disease, feelings of shame, and awareness of services among Korean American elders
Jang Y, Kim G, Chiriboga D.
(2010)
Komet för föräldrar. En randomiserad effektutvärdering av ett föräldraprogram för barns beteende problem.
Kling Å, Sundell K, Melin L, Forster M.
(2006)
En av de viktigaste riskfaktorerna för våldsbrottslighet är tidiga beteendeproblem. Barn som är okoncentrerade och bråkiga riskerar i högre utsträckning att misslyckas inlärningsmässigt och få kamratproblem. Det ökar i sin tur risken för mer allvarliga former av antisociala aktiviteter som alkohol- och drogmissbruk, kriminalitet samt psykisk ohälsa. Det finns alltså påtagliga fördelar med att så tidigt som möjligt försöka hjälpa barn som ofta bråkar och bryter mot normer. Föräldraträning är den bästa metoden för att minska dessa problem hos barn. Ingen annan metod har bättre forskningsstöd. I denna rapport undersöks om det i Sverige utvecklade föräldraträningsprogrammet Komet kan hjälpa föräldrar att bättre hantera beteendeproblem hos det egna barnet. Utvärderingen omfattar Komet i ordinarie verksamhet och har genomförts i form av en randomiserad kontrollerad studie med 159 föräldrar till barn i åldrarna tre till tio år som av föräldrarna bedömdes vara bråkiga och trotsiga. Familjerna lottades till ett av tre alternativ: den ordinarie versionen av Komet, en kortversion av Komet samt en grupp som fick vänta en termin på behandling (väntelista). Data samlades in före interventionernas start samt efter fyra respektive tio månader. Den sista mätningen omfattade endast familjer som fått någon av Komet-versionerna. De familjer som ej deltagit i datainsamlingen vid fyra respektive tio månader (13%) har inte tillåtits snedvrida randomiseringen. I stället har deras sista mätvärde flyttats fram och använts för bortfallet. Detta sätt att hantera bortfall är det rekommenderade. Resultaten visar att Komet ökat föräldrarnas föräldrakompetenser vid fyramånadersmätningen samt minskat barnens beteendeproblem och ökat deras sociala kompetenser. Jämfört med gruppen som befunnit sig på väntelista hade den ordinarie versionen av Komet starka effekter på föräldrakompetenser (ES =.89) och beteendeproblem (ES =.68) och medelstarka på sociala kompetenser (ES =.41). För kortversionen av Komet var motsvarande effekter svaga till medelstarka (ES =.39,.35 resp.14). Effekterna av Komet förefaller stabila eller ökande efter i genomsnitt tio månader. Efter kompensation för väntelistans resultat efter fyra månader (motsvarande resultat efter tio månader saknas) har det ordinarie Komet mycket starka effekter för föräldrakompetenser (ES = 1.05) och barns beteendeproblem (ES =.92) samt starka för sociala kompetenser (ES =.69). För kortversionen av Komet var effekterna något lägre (.61,.55 resp.38). De positiva effekterna av den ordinarie versionen av Komet är enligt två meta-analyser i nivå med eller överträffar de genomsnittliga effekterna i andra föräldraträningsprogram. Barnens minskade beteendeproblem kunde kopplas till de förändrade föräldrabeteendena; ju bättre föräldrakompetens föräldrarna visade desto färre beteendeproblem hos barnen. Sökord. Föräldraträning, bråkiga barn,
Kommunens stöd till anhörigvårdare : anhörigas erfarenheter och synpunkter
Wennberg, K. and M. Szebehely
(2002)
Kommunens stöd till anhörigvårdare : Anhörigas erfarenheter och synpunkter.
Wennberg, K., & Szebehely, M.
(2002)
Kommunernas anhörigstöd – utvecklingsläget 2005
Socialstyrelsen
(2005)
Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care
Ekstedt M, Stenberg U, Olsson M, Ruland CM
(2014)
Being a family member of a patient who is being treated in an acute care setting
for cancer often involves a number of challenges. Our study describes Norwegian
cancer care health professionals' perceptions of family members who served as
family caregivers (FCs) and their need for support during the in-hospital cancer
treatment of their ill family member. Focus group discussions were conducted with
a multidisciplinary team of 24 experienced social workers, physicians, and nurses
who were closely involved in the patients' in-hospital cancer treatment and care.
Drawing on qualitative hermeneutic analysis, four main themes describe health
professionals' perceptions of FCs during the patient's in-hospital cancer care:
an asset and additional burden, infinitely strong and struggling with
helplessness, being an outsider in the center of care, and being in different
temporalities. We conclude that it is a challenge for health care professionals
to support the family and create room for FC's needs in acute cancer care. System
changes are needed in health care, so that the patient/FC dyad is viewed as a
unit of care in a dual process of caregiving, which would enable FCs to be given
space and inclusion in care, with their own needs simultaneously considered
alongside those of the patient.
Health economic analysis on a psychosocial intervention for family caregivers of persons with dementia
Dahlrup B, Nordell E, Steen Carlsson K, Elmståhl S.
(2014)
BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.
Health economic analysis on a psychosocial intervention for family caregivers of persons with dementia
Dahlrup B, Nordell E, Steen Carlsson K, Elmståhl S.
(2014)
BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.
Health Education Needs of Patients with Schizophrenia and their Relatives
Gumus, Aysun Babacan
(2008)
The purpose of this study was to determine the health education needs of patients with schizophrenia and their relatives. A total of 80 patients and 80 relatives were included in the study. The data were collected using Descriptive Characteristics Questionnaire and Evaluation of Health Educational Needs Form. The subjects that patients and their relatives felt they had the greatest need to learn more about were general information about schizophrenia, coping with symptoms of schizophrenia, and communication and social relationships. It was determined that the patients' health education needs were affected by their employment status, income level, and longest place of residence, and their relatives' health education needs, by their marital status, degree of family relationship, educational level, income level, whether or not they were a member of an association or group, and whether or not they had received education about schizophrenia. On the basis of the health education needs identified by the patients with schizophrenia and their relatives, a health education program should be prepared.
Health-promoting conversations about hope and suffering with couples in palliative care.
Benzein, E., Saveman, B.
(2008)
Health-promoting conversations about hope and suffering with couples in palliative care.
Benzein, E., & Saveman, B.
(2008)
BACKGROUND:
Families living with a dying relative face existential challenges which need to be met by caregivers in a dialogue.
AIM:
To describe couples' experiences of participating in nurse-initiated health-promoting conversations about hope and suffering during home-based palliative care.
METHOD:
Data comprised semi-structured evaluative interviews with six couples. Each couple together had previously participated in three health-fostering conversations with nurses. Data were analyzed by content.
RESULT:
Talking with nurses about existential issues such as hope and suffering made couples feel that they were part of a trustful relationship, and that it was a healing experience. It gave them the opportunity to unburden themselves, as well as a way of learning and finding new strategies for managing daily life.
CONCLUSION:
Health-promoting conversations about hope and suffering should be implemented as a natural part of the caring relationship between caregivers and families in the palliative context.
Hela människan-hjulet en samtalsmodell för livskunskap & känsla av sammanhang
Hagborg, E., Jonsson, K Y., & Salmson, K.
(2010)
Hela människan-hjulet är en handfast och praktiskt inriktad metodbok för alla som vill arbeta med stödgrupper för barn, unga, vuxna eller familjer. För att på ett ansvarsfullt sätt kunna arbeta med stödgrupper krävs grundläggande kunskaper inom många olika livsområden. Detta belyses i bokens teoretiska första del som handlar om genus och etik, alkohol och droger, fattigdom och folkhälsa, stödfunktioner och prevention, lek, kreativitet, livsåskådning samt känslor. På denna teoretiska kunskapsbas, tron på mänskliga rättigheter och speciellt barnkonventionen, vilar metodiken i Hela människan-hjulet. I andra delen finns instruktioner och arbetsmaterial till de gruppträffar som utgör den praktiska tillämpningen av metoden. Materialet kan även laddas ner från www.studentlitteratur.se/helamanniskanhjulet. Metoden är utarbetad och prövad i praktiska och professionella sammanhang mot bakgrund av stor teoretisk kunskap och passar yrkesverksamma inom de flesta områden inom socialt arbete eller stödjande verksamheter.
Held to ransom : parents of self-harming adults describe their lived experience of professional care and caregivers.
Lindgren B-M, Åström S, Hällgren Graneheim U.
(2010)
The aim of the study was to discover and describe lived experiences of professional care and caregivers among parents of adults who self-harm. Narrative interviews were conducted with six parents of daughters with self-harming behaviours and analysed using a phenomenological hermeneutic approach. The meanings of the parents' narratives of their lived experiences of professional care and caregivers were interpreted as their being involved in 'limit situations' comparable to hostage dramas. Several meaningful themes contributed to this interpretation: being trapped in a situation with no escape; being in the prisoner's dock; groping in the dark; and finding glimmers of hope. Parents of daughters who were in care because of self-harming often felt obliged to pay an emotional ransom, which included feelings of being accused, being 'broken', being confused, and feeling lost. Moments of peace occurred as welcome breaks offering a short time of rest for the parents. Situations that were understood by the parents and solved in a peaceful way were experienced as a respite and inspired parents with hope for their daughters' recovery.
Helhetssyn på människan: ett material avsett att ge en fullständigare förståelse för människan, speciellt gravt förståndshandikappade
Kylén, G.
(1979)
ett material avsett att ge en fullständigare förståelse för människan, speciellt gravt förståndshandikappade
Kommuners och organisationers stöd till äldres anhöriga : En nationell kartläggning
Dahlberg, L.
(2000)
Help wanted. Providing and Paying for Long-Term Care
OECD
(2011)
from www.oecd.org/health/longtercare/helpwanted
Kommunikation hos och med barn och ungdomar med flerfunktionsnedsättningar
Wilder, J
(2014)
Nationellt kompetenscentrum anhöriga, Nka, har fått i uppdrag av Socialdepartementet
att utveckla ett nationellt kunskapsstöd till föräldrar och anhöriga till barn och ungdomar med flerfunktionsnedsättningar. Syftet med kunskapsstödet är att underlätta kunskapsinhämtning, erfarenhetsutbyte och nätverkskontakter för anhöriga
Kommunikation hos och med barn och ungdomar med flerfunktionsnedsättningar: En systematisk kunskapsöversikt
Wilder J.
(2014)
Helseprofil for Oslo: Eldre. KS Forskning. Program for storbyrettet forskning
Folkhelseinstituttet
(2003)
Hemhjälpsutvecklingen: samma problem, skilda lösningar?
Szebehely, M., Lingsom, S. & Platz, M.
(1997)
Hemmet som arenan för äldres och funktionshindrades rehabilitering
Tamm, Maret & Lindqvist, Rafael
(2004)
Avhandlingens övergripande syfte var att studera multidisciplinära teams,
äldre personers och familjemedlemmars erfarenheter av hemrehabilitering.
Avhandlingen baseras på fyra studier (I-IV). Alla studierna har en kvalitativa
beskrivande design. Datamaterialet utgjordes av fokusgruppsintervjuer med
personal arbetande i team i kommunal hälso- och sjukvård (I), intervjuer med
äldre personer, över 65 år, som vårdats på sjukhuset och därefter fortsatt
rehabilitering i hemmet (II,III,IV), samt familjemedlemmar involverade i de äldres
rehabilitering (II).
Studie I visade på betydelsen av att möta äldres individuella behov och att arbeta
utifrån ett rehabiliterande förhållningssätt i avsikt att ge en hjälp som inte innebär
att ta över handlingar från den äldre. Väsentligt var att i teamet reflektera över hur
man agerar utifrån den egna professionen för att kunna utveckla ett
rehabiliterande förhållningssätt i det dagliga arbetet. I resultatet framkom att
teamen uppfattade hemrehabilitering som positiv för de äldre, men mindre
lämpligt om de äldre var svårt sjuka och de kände sig otrygga i sitt hem. Respekt
för de äldres integritet i deras hem och att göra de närstående delaktiga i
rehabiliteringen betonades. Resultatet visade på att för att kunna utveckla
samarbetet i teamet finns behov av att diskutera varje professions ansvarsområde
och klargöra gränser mellan varandras ansvarområden. Behovet av att tillföra
psykosocial kompetens i teamet framhölls för att möta de äldres behov. I studie II
framkom att de äldre upplevde rehabiliteringen vara en balansgång i att känna av
vad kroppen orkar med för dagen och vad som är realistiskt att uppnå för att
känna välbefinnande. Tryggheten i att ha någon i familjen nära sig i hemmet var
oumbärligt för att våga utföra träning och vardagliga aktiviteter. Resultatet visar
på de äldres upplevelse av otillfredsställelse med att vara beroende av andra.
Familjemedlemmar var engagerade i de äldres rehabilitering genom att finnas till
hands, hjälpa till och vara stödjande, vilket var en självklar handling men också
utmanande i att kunna hjälpa på rätt sätt. Bristande information om hjälpmedels
funktion och användning skapade frustration. Resultatet visar att både de äldre
och deras familjemedlemmar ser hemmiljön bidra till att underlätta rehabilitering.
Hemmets vårdetik : Om vård av äldre i livets slutskede
Silfverberg, G.
(2007)
Hemsjukvård i samverkan för äldre med komplexa vård- och omsorgsbehov
Althén, A.
(2008)
Hemvårdsbidrag – ersättning eller erkännande? En kvalitativ studie om några biståndsbedömares syn på hemvårdsbidrag och ansvaret för äldres omsorg [C-uppsats].
Glader, S. & Lindahl, H.
(2008)
Hennes jobb: ta hand om maken : kommuner sparar - anhöriga får ta över; (De sista ljuva åren? Anna & Ulf kollar äldrevården).
Bäsén, A.
(2009)
His helping hands-adult daughter's perceptions' of fathers with caregiving responsibility
Eriksson H, Sandberg J, Holmgren J, Pringle K.
(2013)
Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers "masculine authenticity", all of them appear to cherish "his helping hands" as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional 'male activities' and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.
History of the medical home concept
Sia, C., Tonniges, T. F., Osterhus, E., & Taba, S.
(2004)
History of the medical home concept
Sia, C., Tonniges, T. F., Osterhus, E., & Taba, S.
(2004)
Hjemmehjelp, brukere, kvalitet: en litteraturgjennomgang
Helset, A.
(1997)
Hjälp i hemmet i nedskärningstid - hemtjänstens och anhörigas insatser för gamla kvinnor och män
Szebehely, M.
(1998)
Hjälp i hemmet i nedskärningstid – hemtjänstens och anhörigas insatser för gamla kvinnor och män
Szebehely, Marta
(1998)
hjälper vem? -informell hjälp och hjälpmedelsanvändning.
Barenfeld, E., Nilsson, K., Örnvall, s., & Dahlin-Ivanoff, S.
(2009)
Hjälpmedelsboken : psykiska funktionsnedsättningar : för människor med ADHD, Aspergers syndrom, OCD och psykossjukdomar, deras anhöriga och personal
Gerland, G.
(2011)
Holocaust Icons: Symbolizing the Shoa in History and memory
Stier, O. B.
(2015)
The Holocaust has bequeathed to contemporary society a cultural lexicon of intensely powerful symbols, a vocabulary of remembrance that we draw on to comprehend the otherwise incomprehensible horror of the Shoah. Engagingly written and illustrated with more than forty black-and-white images, Holocaust Icons probes the history and memory of four of these symbolic relics left in the Holocaust's wake.
Jewish studies scholar Oren Stier offers in this volume new insight into symbols and the symbol-making process, as he traces the lives and afterlives of certain remnants of the Holocaust and their ongoing impact. Stier focuses in particular on four icons: the railway cars that carried Jews to their deaths, symbolizing the mechanics of murder; the Arbeit Macht Frei ("work makes you free") sign over the entrance to Auschwitz, pointing to the insidious logic of the camp system; the number six million that represents an approximation of the number of Jews killed as well as mass murder more generally; and the persona of Anne Frank, associated with victimization. Stier shows how and why these icons—an object, a phrase, a number, and a person—have come to stand in for the Holocaust: where they came from and how they have been used and reproduced; how they are presently at risk from a variety of threats such as commodification; and what the future holds for the memory of the Shoah.
In illuminating these icons of the Holocaust, Stier offers valuable new perspective on one of the defining events of the twentieth century. He helps readers understand not only the Holocaust but also the profound nature of historical memory itself.
Kommunikativ omvårdnad
Boel Heister Trygg
(2008)
Om alternativ och kompletterande kommunikation för personer med demens, förvärvad hjärnskada och grav utvecklingsstörning
Kommunövergripande tillsyn av äldreomsorgen i Västra Götalands län 2005-2008 - Anhörigstöd
Länsstyrelsen i Västra Götalands län
(2009)
Kompisboken om sorg
Lotta Polfeldt
(2006)
För de allra flesta händer det inte. Men varje år mister fler än 3 000 barn och ungdomar en förälder eller ett syskon. Då är det viktigt att ha bra kompisar. Men hur ska en bra kompis vara när något så svårt händer? Finns det saker man helst inte ska göra eller säga? Törs man fråga om dödsfallet? Kan man vara precis som vanligt och skratta och skoja? I den här boken får du träffa några barn och ungdomar som förlorat en nära anhörig. Hur var deras kompisar då? Vad var bra och vad var kanske inte lika bra? Du får också träffa några kompisar.
Kompletterande anknytningsperson på förskolan
Hagström, B.
(2010)
Barn till föräldrar med psykisk ohälsa är en eftersatt grupp. Syfet med denna studie är att studera pedagogers utveckling som kompletterande anknytningsperson i relation till en tre årig fortbildning.Fortbildnigen ägde rum samtidigt som pedagogerna arbetade och innehöll teorier om barns utveckling, nämligen anknytningsteori, Affektteori samt Sterns teori om barns självutveckling.En narrativ metod användes och narrativen analyserades i relation till fortbildningens innehåll, teorier om pedagogers lärande och teorier om tidig utveckling.
Resultatet diskuteras utifrån pedagogers arbete med utsatta barn i förskolan, lärarutbildningens innehåll och fortbildning samt samverkan.
Kontaktmannaskap inom äldreomsorgen
Birge Rönnerfält, M., Norman, E., Wennberg, K.
(2008)
Mönster i anhörigomsorgen: [Elektronisk resurs] : En uppföljning i Mullsjö 2010
Malmberg, B., Sundström, G.
(2010)
Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009). År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig. I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.
Möta den som sörjer - Flera perspektiv på sorg efter dödsfall -
Inger Benkel
(2020)
Sorg efter ett dödsfall är en mångfacetterad process. Det finns mycket som kan inverka på sorgens process och behovet av stöd som den sörjande kan behöva. Boken har ett psykosocialt perspektiv på sorgeprocessen och beskriver olika omständigheter och faktorer som kan påverka den som sörjer.
Boken vänder sig till den som i sitt arbete möter sörjande, som vill lära sig mer om sorg och till den som har någon som sörjer i sin omgivning. Kanske kan den som själv är i en sorgeprocess känna igen sig i bokens beskrivningar av sorg.
Kortare vårdtid efter utbildning i affektiv sjukdom
Tidemalm, D., Johnson, L., Hulterström, A., Omerov, S., & Åberg Wistedt, A.
(2007)
Vårdtiden blir kortare om patienter med affektiv sjukdom och deras närstående erbjuds utbildning. Det visar resultat av en undersökning vid Affektivt centrum i Norra Stockholms psykiatri, S:t Göran, vid jämförelse av vårdkonsumtion hos patienter före och efter deltagande i ett utbildningsprogram.
Deltagarnas subjektiva tillfredsställelse med utbildningen var hög. Många i såväl patient- som närståendegruppen uppgav att de kunde använda kunskaper från utbildningen till att hantera sjukdomen.
Möten med anhöriga från biståndshandläggares perspektiv, Fokus på anhöriga, nr 12.
Olsson, M., & Wågestrand, P.
(2009)
Mötets magi – om samspelsbehandling och vardagens välgörande möten
Neander, Kerstin
(2011)
Resultaten visade på tydliga positiva effekter för både föräldrar och barn avseende föräldrastress, anknytningsmönster, psykiskt välmående och att barnen uppvisade färre problem. I intervjuerna beskriver familjerna att det oftast är relationen till behandlarna som blir avgörande för hur behandlingen lyckas. Hur uppstår då möten som kan bli avgörande för familjernas möjlighet till förändring och hur kan professionella bli "betydelsefulla personer" som gör skillnad i familjen och barnens liv? Kerstin Neander, med lång klinisk erfarenhet, reflekterar kring aktuell forskning och praktikens möjligheter och utmaningar. Boken ger både en möjlighet att fördjupa sig i anknytningsteori och samspelsbehandlingens utvecklingshistoria och ringar in viktiga utvecklingsområden för samhället att satsa på för att alla föräldrar och barn ska få så goda förutsättningar som möjligt att utvecklas tillsamman
Mötets många ansikten – när professionella möter klienter
Johansson, T.
(2006)
Socialt arbete. En grundbok. A. Meeuwisse, S. Sunesson and H. Swärd
Narkotikabruket i Sverige
Statens folkhälsoinstitut
(2010)
Hur många människor i Sverige använder narkotika och hur ser deras livssituation ut? Dessa två frågor har legat till grund för sju olika studier vars resultat redovisas i den här rapporten. Resultaten från flera av studierna kan forma ett nytt underlag för att underlätta framtida inriktningar och policybeslut. Rapporten visar bland annat oroväckande narkotikavanor hos yngre personer och tydliga könsskillnader i narkotikavanorna i vissa grupper, ofta förknippad med olika levnadsvillkor för män och kvinnor. En uppdelning via preparat i de flesta av undersökningarna har gett mycket värdefull information om olika substansers genomslag i samhället, och bland vilka grupper.
Narrative exposure therapy: A short-term intervention for traumatic stress disorders after war, terror, or torture
Schauer, E., Neuner, F. & Elbert, T.
(2005)
This book is the first practical manual describing a new and successful short-term treatment for traumatic stress and PTSD called Narrative Exposure Therapy (NET). The manual provides both experienced clinicians and trainees with all the knowledge and skills needed to treat trauma survivors using this approach, which is especially useful in crisis regions where longer-term interventions are not possible. NET has been field tested in post-war societies such as Kosovo, Sri Lanka, Uganda, and Somaliland. Its effectiveness was demonstrated in controlled trials in Uganda and Germany. Single case studies have also been reported for adults and children. Three to six sessions can be sufficient to afford considerable relief. Part I of this manual describes the theoretical background. Part II covers the therapeutic approach in detail, with practical advice and tools. Part III then focuses on special issues such as dealing with challenging moments during therapy, defense mechanisms for the therapist, and ethical issues.
Narrative Research. Reading, Analysis and Interpretation
Lieblich, A., Tuval-Mashiach, R., & Zilber, T.
(1998)
Using a new model for the classification of types of readings, this book shows how to read, analyze and interpret life story materials.
The authors introduce four models: holistic-content reading; holistic-form reading; categorical-content reading; and categorical-form reading. They present two complete narratives so that readers can compare the authors' interpretations against the actual text as well as analyze the stories on their own. The subsequent chapters provide readings, interpretations and analyses of the narrative data from the models.
National normative and reliability data for the revised Children's Manifest Anxiety Scale.
Reynolds CR, Paget KD.
(1983)
Administered the revision of the Children's Manifest Anxiety Scale (RCMAS) to 4,972 6–19 yr olds from 13 states representing all geographic regions of the US. Norms are reported for White males, White females, Black males, and Black females separately at each age level for the total anxiety scale, 3 subscales of anxiety, and a lie scale. MANOVA demonstrated performance on the RCMAS to be a complex function of these factors. Reliability was satisfactory for all groups except Black females below the age of 12 yrs. (17 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
National Research C. Preventing Mental, Emotional, and Behavioral Disorders Among Young People : Progress and Possibilities.
Warner KE, Boat TF, O'Connell ME
(2009)
Contributors
National Research Council; Division of Behavioral and Social Sciences and Education; Institute of Medicine; Board on Children, Youth, and Families; Committee on the Prevention of Mental Disorders and Substance Abuse Among Children, Youth and Young Adults: Research Advances and Promising Interventions; Mary Ellen O'Connell, Thomas Boat, and Kenneth E. Warner, Editors
Description
Mental health and substance use disorders among children, youth, and young adults are major threats to the health and well-being of younger populations which often carryover into adulthood. The costs of treatment for mental health and addictive disorders, which create an enormous burden on the affected individuals, their families, and society, have stimulated increasing interest in prevention practices that can impede the onset or reduce the severity of the disorders.
National Survey on Drug Use and Health 2012 [2015-11-05].
Samsha
(2012)
Nationell brukarundersökning inom vården och omsorgen om äldre 2008
Socialstyrelsen
(2009)
Nationell handlingsplan för äldrepolitiken. Regeringens proposition 1997/98:113
Socialdepartementet
(1997)
Krisstöd vid olyckor, katastrofer och svåra händelser: att stärka människors motståndskraft
Hedrenius, S., & Johansson, S.
(2013)
Den omvälvande kunskapsutvecklingen inom krisstöd har helt förändrat synen på vad som faktiskt hjälper barn och vuxna vid svåra händelser. Debriefing rekommenderas till exempel inte längre i det akuta skedet internationell konsensus och Socialstyrelsen förordar i stället Psykologisk första hjälp.
Utifrån aktuell forskning och egna praktiska erfarenheter förklarar författarna till boken Krisstöd hur vi reagerar vid svåra händelser, från allvarliga sjukdomsbesked till större katastrofer. Med levande och konkreta exempel beskriver de hur man arbetar med Psykologisk första hjälp för att stärka människors motståndskraft. Barns och ungas reaktioner och behov ägnas extra omsorg, samt hur man som personal kan ta hand om sig själv och varandra.
Denna grundbok om krisstöd är skriven för blivande och yrkesverksamma sjuksköterskor, poliser, socionomer, psykologer, läkare, personalvetare och andra som möter människor i det akuta skedet av svåra händelser i sitt dagliga arbete eller vid större olyckor och katastrofer.
Kritisk utredningsmetodik
Edvardsson, B.
(1996)
Kronisk sorg vid MS. Intervju med Ann-Kristin Isaksson
Berggren, Katarina
(2007)
Nationell tillsyn av kommunernas insatser till personer med psykisk funktionsnedsättning 2009-2011. Personer med psykisk funktionsnedsättning – får de stöd och omsorg utifrån sina behov?
Socialstyrelsen
(2012)
Vad vet vi om personer med psykisk funktionsnedsättning? Hur ser deras liv
ut? Får de stöd och omsorg utifrån sina behov? Har de en fungerande boendesituation?
Känner de till sina rättigheter? Och framför allt har de fått det
bättre 17 år efter psykiatrireformen?
På uppdrag av regeringen har Socialstyrelsen genomfört en nationell tillsyn
av kommunernas insatser till personer med psykisk funktionsnedsättning
för åren 2009–2011. Under tillsynsperioden 2009–2011 har totalt 178
kommuner granskats. Den 1 januari år 2010 övertog Socialstyrelsen ansvaret
för tillsynen över socialtjänsten från länsstyrelserna, men villkoren för
uppdraget under åren 2010 och 2011 var desamma som tidigare.
Den nationella tillsynen under åren 2009–2011 har huvudsakligen haft två
inriktningar. Den ena inriktningen avsåg tillsyn av socialtjänsten. Den andra
inriktningen handlade om kommuner och landsting ingått överenskommelser
om samarbete samt om kommuner och landsting upprättat individuella
planer.
Socialstyrelsen har genom tillsynen uppmärksammat ett antal brister som
sammantaget visar att kommun och landsting inte uppfyller de krav och
intentioner som anges i lagar, förordningar och föreskrifter. De nya lagbestämmelserna
som infördes i socialtjänstlagen, SoL, och i hälso- och sjukvårdslagen,
HSL, har inte fått genomslag i kommuner och landsting. De nya
bestämmelserna gäller dels, krav på att kommuner och landsting ska ingå en
överenskommelse om samarbete, dels att kommuner och landsting tillsammans
ska upprätta en individuell plan när en person behöver insatser både
från hälso- och sjukvården och från socialtjänsten och om den enskilde samtycker
till att den upprättas.
Socialstyrelsen konstaterar att:
Målet med att skapa bostäder i enlighet med målgruppens behov är inte
uppfyllda i alla kommuner.
Arbetet med att ingå överenskommelser om samarbete mellan kommuner
och landsting behöver förstärkas för att tydliggöra ett gemensamt ansvar
för vård- och stödinsatser för målgruppen.
Rättssäkerheten i handläggning och dokumentation behöver förstärkas
väsentligt.
Nationell utvärdering av förskolan: Tio år efter förskolereformen
Skolverket
(2008)
Syftet med utvärderingen är att följa upp resultaten från den första nationella utvärderingen, som presenterades 2004 i rapporten "Förskola i brytningstid", och studera förskolereformens genomslag och konsekvenser knappt tio år efter införandet av läroplanen. Utvärderingen sätter också in den svenska förskolan i ett internationellt perspektiv och pekar på viktiga vägval som förskolan står inför i sin fortsatta utveckling.
Utvärderingen bygger dels på en enkätstudie riktad till ledningsansvariga i landets samtliga kommuner och kommundelar, dels fallstudier i ett urval kommuner och förskolor.
Nationella kompetenscentra som intermediär mellan forskning och praktik – Tre år med Nationellt kompetenscentrum Anhöriga och Svenskt demenscentrum, Slutrapport från en lärande utvärdering
Svensson, L., Svensson, H., & Uliczka, H
(2011)
Socialstyrelsen har haft i uppdrag att utveckla två nationella kompetenscentrum för att samla och
sprida kunskaper samt stimulera utvecklingen inom områdena demens och demensvård samt
anhöriga till äldre. År 2008 startade Svenskt demenscentrum (SDC), med huvudmännen Stiftelsen
Silviahemmet och Stiftelsen Stockholms läns Äldrecentrum, och Nationellt kompetenscentrum
Anhöriga (NkA) med Fokus Kalmar, FoU Sjuhärad – Välfärd Högskolan i Borås,
Humanvetenskapliga inst. & eHälsoinstitutet vid Linnéuniversitetet, Anhörigas Riksförbund,
Hjälpmedelsinstitutet, Länssamordnarna för anhörigstöd i Norrland och Landstinget i Kalmar län
som huvudmän.
Socialstyrelsen har låtit utvärdera centrumens verksamheter och utsåg Linköpings universitet som
utvärderare i en lärande utvärdering. Uppdraget har letts av professor Lennart Svensson.
Upplägget av utvärderingen har skett i samverkan med Socialstyrelsen och centrumens
ledningar/medarbetare. Metoderna var kvalitativa intervjuer och enkäter. Tre analysseminarier har
anordnats. Fokus i frågeställningarna har legat på om centrumen uppnått: en kvalitetsmässig
substans i innehållet, en strategisk påverkan gentemot beslutsfattare, en spridning och ett
synliggörande av sitt material, samt att agera som intermediär mellan intressenter inom området.
Enkäterna besvarades av 800 (NkA:s) respektive 2 450 (SDC:s) personer, de flesta personal i
kommunal social-/omsorgsförvaltning. Största andelarna var för NkA anhörigkonsulenter och för
SDC deltagare i webbutbildningen Demens ABC. Två tredjedelar (i båda enkäterna) läste
nyhetsbreven, som över 95 % hade nytta av. Båda centrumens hemsidor och informationsmaterial
var i hög grad uppskattades. En stor majoritet ansåg att centrumens fortsatta existens var
nödvändig.
Utvärderingen fann att båda centrumen lyckats väl i spridning och synliggörande av sina
verksamheter. Konferenser och mötesdagar hade arrangerats. Informationsmaterial av hög
kvalitet hade spridits i hela landet. Hemsidorna var lättillgängliga och informativa.
NkA hade på en landsomfattande nivå byggt upp Blandade lärande nätverk vars verksamhet
byggde på att anhöriga, politiker, tjänstemän och anhörigsamordnare möttes och diskuterade
temafrågor. Nätverken inom respektive temaområden samordnades av en forskare och en
praktiker som tillhandhöll relevant och lättillgänglig forskning och som samlade in och
sammanställde kunskaper från diskussionerna.
SDC hade nått ut på en nationell nivå med sin utbildning Demens ABC, baserad på
Socialstyrelsens Nationella riktlinjer för vård och omsorg vid demenssjukdom. Demens ABC har
i dagsläget genomgåtts av nästan 25 000 personer. Utbildningen har också bidragit till en stor
spridning då deltagarna ofta börjar prenumerera på SDC:s nyhetsbrev.
Politiker ute i landet var delvis nådda, bl.a. genom centrumens deltagande på partiernas kommunoch
landstingsdagar, men inte i stor omfattning. Dock fanns det riksdagspolitiker som lyssnade på
båda centrumen och även äldreministern sökte aktivt del av informationen. Flertalet intervjuade
ansåg att den största nyttan centrumen hittills lett till var att frågan lyfts och kommit på agendan
även bland höga beslutsfattare. En strategisk påverkan kan därmed anses vara uppnådd, vilket
även syns i att de båda centrumen fått nya uppgifter. Både SDC och NkA hade svårigheter att nå
ut till landstingen, särskilt till läkarkåren. Tydliga strategier för framtiden att nå ut till grupper
som läkare, studerande och politiker fanns dock hos båda centrumen.
Forskningsanknytningen i informationsmaterialet var god hos båda centrumen och kontakten med
forskningen inom respektive område var mycket väl tillgodosedd. Inom båda centrumen fanns
3
forskare, även om forskning inte ingick i uppdragen. Den djupare förståelsen för frågorna fanns
på så sätt att flera medarbetare hade en bakgrund ute i verksamheter. Utvärderingens fann därmed
en hög grad av substans i centrumens innehåll och arbete. Båda centrumen har en stark vilja att
påverka för att demensvård respektive anhörigstöd ska bli välkända ämnen för politiker och
allmänhet samt för att vård och stöd ska fungera bättre ute i praktiken. Framförallt har de en vilja
att hjälpa andra, t.ex. ideella organisationer, att påverka genom att bidra med tillförlitlig kunskap.
Utvärderingens samlade bedömning av svar i intervjuer och enkäter var att de positiva svaren om
båda centrumen var helt överskuggande, det framkom få negativa uppfattningar. En negativ sak
var emellertid att flera intervjuade och svarande på enkäten saknade information om andra
anhöriggrupper (än anhöriga till äldre) från NkA. En stark opinion fanns för att NkA:s uppdrag
skulle utökas till att gälla samliga anhöriga. Utvärderingen delar den uppfattningen till fullo då
det finns risk för förvirring och oklarheter hos allmänhet och kommun-/landstingspersonal när de
inte hittar den önskade informationen om anhöriga hos ett kompetenscentrum för anhöriga.
Utvärderingen ser flera framgångsfaktorer som förklarar de båda centrumens framgångar:
En kunnig och engagerad ledning och involverade medarbetare i båda fallen.
Ett öppet klimat som stimulerar till egna initiativ.
Utvecklade kontakter med relevanta aktörer, till stora delar skapade redan
före start vilket gett vinster i form av bra kontaktnät för påverkan.
Förmågan att skapa legitimitet hos forskarsamhället.
En stor efterfrågan på kunskap från omgivningen, där centrumen fyllt ett
vakuum som intermediärer mellan forskning och praktik.
Förmågan att ständigt lära av gjorda erfarenheter och att vidareutveckla
verksamheten.
Socialstyrelsens goda stöd har gett en bra bas för uppbyggnaden av centrumen.
Centrumen saknar inte framtida utvecklingsområden. NkA har ett utvecklingsområde i att utöka
sina målgrupper till samtliga anhöriga. Båda centrumen har en stor utmaning inför framtiden i att
påverka för att forskningen styr mot att de många vita fläckarna på kunskapskartan blir fyllda.
Påverkan på det formella utbildningssystemet i att där få in utbildningar om demens och anhöriga
är en viktig uppgift för framtiden. NkA ser en utmaning i att lyfta frågan till samhällsnivån för att
nå en anhörigvänlig vård och omsorg och påverkan av arbetslivet. SDC ser en utmaning i att med
fortsatt hög kvalitet kunna möta upp en ökad efterfrågan av rådgivning.
Båda verksamhetsledarna ansåg att de fått ett gott och tillräckligt stöd från Socialstyrelsen under
etableringsfasen av centrumen. Kontakten hade varit mycket god, det hade varit ett "äkta
samarbete" med en bra dialog. I framtiden, ansåg centrumen, borde dock finansieringen höjas och
indexregleras så att mer insatser kunde utföras där de såg stora behov. Utvärderingen finner att
Socialstyrelsens agerande under hela fasen bör utgöra en god modell inom myndigheten – och
även spridas som ett lärande exempel till andra myndigheter.
Utvärderingens övergripande slutsats är att det finns goda skäl för att de båda centrumen ska få
fortsätta med, och vidareutveckla, sina verksamheter i ett mer långsiktigt perspektiv, vart och ett
efter sina olika förutsättningar och med delvis skilda strategier. Båda har svarat väl upp mot det
stora trycket från samhället på mer kunskap och de kommer att behövas framöver eftersom dessa
frågor fortsätter att vara aktuella i allt högre grad.
Nationella riktlinjer för psykosociala insatser vid schizofreni eller schizofreniliknande tillstånd 2011 – stöd för styrning och ledning
Socialstyrelsen
(2011)
Socialstyrelsens nationella riktlinjer för psykosociala insatser vid schizofreni eller schizofreniliknande tillstånd innehåller 43 rekommendationer. I tillstånds- och åtgärdslistan ovan finns samtliga tillstånd och åtgärder presenterade.
Centrala rekommendationer som medför ekonomiska och organisatoriska konsekvenser
Socialstyrelsen bedömer att rekommendationerna om samordnade åtgärder, familjeinterventioner, psykologisk behandling och arbetslivsinriktad rehabilitering är de som får störst konsekvenser. Dessa rekommendationer kommer få såväl ekonomiska som organisatoriska konsekvenser, då de ställer krav på förändringar av hälso- och sjukvårdens och socialtjänstens organisationsstruktur samt investeringar i personal och kompetens.
Socialstyrelsens bedömningar av rekommendationernas ekonomiska och organisatoriska konsekvenser har utgått från den verksamhet som hälso- och sjukvården och socialtjänsten bedriver i dag. Informationen om vilka åtgärder som utförs och i vilken utsträckning dessa utförs är dock ofta bristfällig, vilket gör bedömningen svår.
Flera åtgärder som Socialstyrelsen rekommenderar har utvecklats internationellt och är nya för psykiatrin och socialtjänsten. Under arbetet med framtagandet av de nationella riktlinjerna för psykosociala insatser vid schizofreni eller schizofreniliknande tillstånd har det blivit tydligt att det finns ett behov av att utveckla en organisation och modeller för hur ny kunskap ska kunna omsättas i praktiken.
Samordnade åtgärder tidigt – och även senare
Socialstyrelsen rekommenderar samordnade åtgärder som omfattar samhällsbaserad uppsökande vård och omsorg enligt den så kallade ACT-modellen (Assertive Community Treatment) med tillägg av familjeinterventioner och social färdighetsträning för personer som är nyinsjuknade i psykossjukdom. Dessa åtgärder tycks ge positiva effekter på möjligheten att ha ett självständigt boende och att personen tillbringar färre dagar på sjukhus.
Socialstyrelsen rekommenderar även så kallad intensiv case management enligt ACT-modellen för personer med schizofreni eller schizofreniliknande tillstånd som är högkonsumenter av vård, riskerar att ofta bli inlagda på psykiatrisk vårdavdelning eller avbryter vårdkontakter. Jämfört med sedvanlig behandling minskar åtgärden antalet vårdtillfällen, dagar på sjukhus, risken för hemlöshet och arbetslöshet samt ger en större stabilitet i boendet.
Rekommendationerna kräver ökad samverkan mellan hälso- och sjukvården (psykiatrin) och socialtjänsten. På kort sikt innebär rekommendationen ökade kostnader för både hälso- och sjukvården och socialtjänsten, framför allt för utbildning, handledning och eventuellt personaltillskott. På längre sikt bedömer Socialstyrelsen dock att kostnaderna kommer vara oförändrade eller lägre jämfört med i dag bland annat genom minskade kostnader för sjukhusvård.
Familjeinterventioner
Socialstyrelsen rekommenderar familjeinterventioner till personer med schizofreni eller schizofreniliknande tillstånd som har kontakt med sin familj eller närstående. Insatsen minskar återfall och inläggning på sjukhus och tycks förbättra personens sociala funktion och livskvalitet samt det känslomässiga klimatet i familjen.
Rekommendationen medför ökade kostnader till en början för kompetensutveckling för personalen och ett eventuellt ökat personalbehov. På sikt bedömer Socialstyrelsen dock att kostnaderna bli oförändrade eller lägre jämfört med i dag som en följd av en mer samordnad och flexibel verksamhet, och som en följd av ett minskat antal återfall och inläggningar på sjukhus.
Tillgång till psykologisk behandling med kognitiv beteendeterapi
Socialstyrelsen rekommenderar att hälso- och sjukvården erbjuder individuell kognitiv beteendeterapi (KBT) till personer med schizofreni eller schizofreniliknande tillstånd med så kallade kvarstående symtom. Huvudskälet till rekommendationen är att behandlingen visar positiva effekter på kvarstående symtom och på centrala problem för individen. Hälso- och sjukvården kan även erbjuda musikterapi när personer har behov av så kallade icke-verbala terapiformer.
Socialstyrelsen är medveten om att det råder stor brist på personal med adekvat kompetens inom kognitiv beteendeterapi. Rekommendationen ställer krav på att varje landsting och region gör en analys av nuläget när det gäller tillgång till personal med rätt kompetens och hur man utformar effektiva behandlingar. Socialstyrelsen bedömer att kostnaderna för hälso- och sjukvården ökar på kort sikt, men kostnaderna förväntas sedan återgå till befintliga nivåer alternativt till en lägre nivå.
Arbetslivsinriktad rehabilitering i samverkan
Socialstyrelsen rekommenderar arbetslivsinriktad rehabilitering enligt IPS-modellen, då metoden är bättre än arbetsförberedande träningsmodeller när det gäller att skaffa arbete åt personer med schizofreni eller schizofreniliknande tillstånd som har en vilja och motivation till ett arbete.
Ansvaret för arbetslivsinriktad rehabilitering ligger i dag hos flera olika myndigheter i Sverige. Det är inte givet hur den rekommenderade åtgärden ska placeras in i det svenska vård- och stödsystemet. Det finns därmed ett behov av att fortsätta med försöksverksamheter i samverkan mellan olika berörda myndigheter. En förutsättning för att kunna genomföra rekommendationen är att hälso- och sjukvården och socialtjänsten samverkar och har kontakt med Arbetsförmedlingen och Försäkringskassan.
Socialstyrelsen bedömer att kostnaderna till en början kommer att öka för hälso- och sjukvården och socialtjänsten i och med att personalen behöver fortbildning och handledning samt en förändrad organisation. På sikt kommer dock kostnaderna för hälso- och sjukvård, socialtjänst och andra delar av samhället att minska.
Brist på datakällor försvårar uppföljningen
Socialstyrelsen har utarbetat 22 indikatorer för uppföljning inom det psykosociala området för personer med schizofreni eller schizofreniliknande tillstånd.
Ett stort problem för uppföljningen inom det psykosociala området är att det i dag saknas datakällor. Bristen på datakällor gör att uppföljningen av de åtgärder som rekommenderas i riktlinjerna till stor del får begränsas till om den psykiatriska verksamheten och socialtjänsten i dag kan erbjuda dessa insatser. En utveckling av datakällor pågår och på sikt kommer sådana indikatorer att utformas som kan ge kunskap om de processer som används på det psykosociala området och vilka resultat de ger.
Några indikatorer som föreslås är i nuläget inte möjliga att följa på nationell nivå. De bör dock börja användas i uppföljningen av den psykiatriska verksamheten och socialtjänstens verksamhet för personer med psykisk funktionsnedsättning. Sammanlagt har 15 nationella indikatorer tagits fram för uppföljning av den psykiatriska verksamheten och 12 nationella indikatorer för socialtjänstens verksamhet för personer med psykisk funktionsnedsättning. Dessutom föreslås fyra mer generella indikatorer för att spegla resultatet av huvudmännens åtgärder på det psykosociala området.
Kvinnors obetalda arbete ökar
Szebehely, M.
(2006)
Kvinnors obetalda arbete ökar : Främst bland gamla kvinnor har skett en förskjutning från hemtjänst till anhörigomsorg : Och det är framför allt döttrar och andra kvinnliga anhöriga som står för hjälpinsatserna : Tema att vara anhörig
Szebehely, M.
(2006)
Kvinnors och mäns återhämtning från psykisk ohälsa
Schön, Ulla-Karin
(2009)
Rapport i Socialt arbete 130. Doktorsavhandling
The overall aim with this thesis is to describe and analyze women's and men's recovery processes. More specifically, the aim is to determine what women and men with experience of mental illness describe as contributing to the personal recovery process. The point of departure for the studies was 30 in-depth interviews conducted with 15 men and 15 women. The selection of interview subjects was limited to individuals who had been treated in 24-hour psychiatric care and diagnosed as having schizophrenia, psychosis, a personality disorder, or a bipolar disorder.
Four studies have been carried. Study 1 was a baseline article that examined what people in recovery from mental illness outline as facilitating factors to their recovery. The results that emerged from that study indicated areas for further analysis to condense the understanding of the recovery process. In study 2 the similarities and the differences in recovery described by women and men were examined. In Study 3 women's and men's meaning-making with reference to severe mental illness facilitate the recovery process were studied. The forth study explored how peer-support contribute to women's and men's recovery from mental illness.
The results emphasize recovery from mental illness as a social process in which relationships play a key role in creating new identities beside the mental illness. For a majority of the participants meeting peers facilitated the recovery process. The participants described how peer support meant an end to isolation and became an arena for identification, connection, and being important to others. Throughout these recovery processes the impact of gender has been emphasized. The results from this thesis provide new insight into gender as an important factor in understanding the recovery processes. The results from the four studies emphasize the mental patient, the psychiatric interventions and the individual recovery strategies as being influenced by gender constructions.
Känslomässig tillgänglighet hos traumatiserade flyktingfamiljer. Anknytningsbaserad behandlingsmodell för späd- och småbarn och flyktingföräldrar med PTSD
Brendler-Lindqvist, M., Daud, A., & Hermanson Tham, J.
(2012)
Emotional Availability among Traumatized Refugee Families
Red Cross Centre for Tortured Refugees in Stockholm, Sweden, started in 2011 a clinical
research pilot project in order to prevent second generation traumatization among children of
tortured and war-traumatized parents with complex Post-traumatic Stress Disorder, PTSD.
The project runs in co-operation with Karolinska Institutet, Department of Women's and
Children's Health, Child and Adolescent Psychiatric Unit. The aim of the project was to
explore and evaluate a treatment program based on attachment theory and trauma theory for
parents and infants, age 0-24 months.
The early relation of mother-infant is fundamental for the survival of the infant and basic for
development of a child's social, emotional and cognitive health and capacity. According to
research parents with complex, PTSD, risk to transform their symptoms to their children.
The theoretical reference is based on attachment theory and Emotional Availability Scale,
EAS, as an investigating instrument. A clinical sample according to the project criteria was
selected. Five refugee families from the Middle East with established complex PTSD diagnos
have been participated in the treatment program, consisting of psycho pedagogical family
interventions, interplay therapy and group interventions.
The preliminary results of this pilot project indicated an outstanding need for developing a
treatment program focusing on mother and child emotional availability within refugee
families as a preventive intervention. This is the first report of a three-year project, financed
by Stiftelsen Allmänna Barnhuset.
Känslornas betydelse I funktionshindrade barns livsvärld
Hautaniemi, Bozena
(2004)
The aim of my study is to describe and understand disabled children's special way of understanding and relating to the surrounding world. The thesis is based on an empirical study of six severely disabled children, lacking language and speech, aged from nine months to five years. The children were studied by video recordings in Händelsriket, a center organised to offer them different kinds of rich stimulation. One important finding was that the children expressed a non-verbal, meaning making competence that I decided to further explore. First, I tried to interpret the children's competence in the frame of psychoanalytic and psychodynamic theories, which turned out to be difficult as these theories were based on assumptions linked to the tradition of René Descartes, making a clear difference between Cogito and body, nature and culture. In this tradition, human consciousness is based on the acquisition of language and the development of the sphere of symbols. As a consequence, the mentioned theories could not help us to understand the embodied, non-verbal competence of the disabled children. Many of these theorists also argue that their theories have little relevance for disabled children.However, the phenomenological tradition, inspired by among others Edmund Husserl, Martin Heidegger and Maurice Merleau-Ponty, was of much more help in the analysis of the disabled children's activities in Händelsriket. In the theory of the lifeworld, Husserl´s and Merleau-Ponty´s, for instance, introduces two different kinds of intentionality indicating an embodied consciousness of great relevance to the empirical findings.Another important empirical finding was that feelings, and the expression of feelings, seemed to play an important role in the children's non-verbal, meaning making competence. As a consequence of this I have decided to include a discussion of research on feelings, emotions and affects. Based on the critique of the distinction between feelings, emotions and affects in social and anthropological research, I have decided to base my analysis on the concept of feelings.In the empirical analyses I discuss the role of feelings in the disabled children's perception, consciousness, communication and interaction with other people. I found that the meaning making processes based on feelings and expression of feelings contributed to the development of the children's personal styles of understanding their life-world. It also played an important role in the thematisation of their experiences, antecipations of objects, extensions and restrictions of their experiential horizons and their mastering of challenging experiences. The feelings also played important roles in the children's communicative competence and in their interaction with other people and the development of mutual closeness, understanding and community. In short, the feelings could be understood as important constituents of the life-world of the severely disabled children, their understanding of themselves and of the surrounding world.
Kärlek och stålull
Pipping, Lisbeth
(2004)
"Min barndom var full av slag och psykisk misshandel. Jag var alltid rädd, varje dag, varje timme, varje minut och varje sekund. Rädd för min mamma, rädd för mina klasskamrater, rädd för han som utnyttjade oss, rädd för allt. Det fanns nästan ingen trygghet att finna i min barndom.
Jo, det fanns en plats där jag kunde känna mig trygg, även om det tog tid att våga vara trygg hos mina sommarföräldrar. Deras gård var en oas. Där fann jag en trygghet under de sommarveckor jag bodde
långt bort från mamma. Där fick jag provsmaka hur det kunde vara och hur det borde vara att få vara ett litet barn. Men det var bara de där sommarveckorna. En tid som liksom bara var till låns för snart skulle jag hem till min mamma igen, tillbaka till rädslan och utsattheten. Jag ville inte åka hem till när sommaren var slut, jag grät då jag tvingades att åka till mamma igen"
I Kärlek och stålull skildrar Lisbeth Pipping på ett personligt och levande sätt sin uppväxt med en utvecklingsstörd mamma, en svårt alkoholiserad pappa och två småsystrar. Läsaren får ta del av en barndom i misär, bristande omsorg och kärlek...
Kärlek. Drivkraft bakom anhörigvård
Rudenstam, C.
(2004)
Kärleken prövas när livspartnern blir vårdare : tema : kärlekens låga
Sand, A.-B.
(2004)
Kärleken prövas när livspartnern blir vårdare : Tema : Kärlekens låga
Sand, A.-B. M.
(2004)
Labor market work and home care´s unpaid caregivers: A systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work
Lilly M, Laporte M, Coyte P.
(2007)
As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for "intensive" caregivers and developing workplace policies for employed caregivers.
Labor Market Work and Home Care´s Unpaid Caregivers: A Systematic Review of Labour Force Participation Rates, Predictors of Labor Market Wtihdrawal, and Hours of Work
Lilly M, Laporte M, Coyte P.
(2007)
As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for "intensive" caregivers and developing workplace policies for employed caregivers.
Labor Market Work and Home Care’s Unpaid Caregivers: A Systematic Review of Labor Force Participation Rates, Predictors of Labor Market Withdrawal, and Hours of Work.
Lilly, M., Laporte, A. & Coyte, P.
(2007)
Need for Support and participation in treatment differencies among subgroups of relatives to compulsory and voluntarily admitted mentally ill individuals
Östman, Margareta & Hansson, Lars
(1999)
The need for support and participation in treatment of relatives to voluntarily and compulsorily admitted patients was addressed in a study of the quality of mental health services in two Swedish county councils. The aims of the study were to investigate differences in the above aspects between subgroups of relatives, the differences between two years of investigation, 1986 and 1991, and the differences between relatives of voluntarily and compulsorily admitted patients. The relatives investigated consisted of 79 spouses, 118 parents and 31 grown-up children. The results showed that there were only minor differences between the subgroups concerning their participation in care. Grown-up children experienced significantly less need of support and received less help for this need. In 1991, relatives participated more in the care situation, were more interested in support with regard to their own life situation, and also showed more positive attitudes towards the psychiatric services than in 1986. The relatives of the voluntarily admitted patients felt more involved in the patient's treatment, whereas the relatives of those compulsorily admitted felt less involved and perceived obstacles to admission.
Needs of elderly patients in palliative care
Wijk H, Grimby A.
(2008)
A pilot study on elderly patients' end-of-life needs was performed at a Swedish geriatric palliative ward. Thirty patients (15 men and 15 women; mean age, 79 years) with a primary diagnosis of cancer and admitted for palliative care were interviewed by a nurse using semistructured interviews. The study included demographic data, physical and psychologic status, and naming and ranking of individual needs. Elimination of physical pain was ranked as the primary need of half of the patients. Only when pain was eliminated or absent did other important needs (psychological, social, spiritual) appear frequently.
Neglected victims of murder: children’s witness to parental homicide
Burman, S., & Allen-Meares, P.
(1994)
Abstract
Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.
Neglected victims of murder: children’s witness to parental homicide
Burman, S. & Allen-Meares, P.
(1994)
Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.
Negotiating Childhood
Solberg, Anne
(1994)
Negotiating lay and professional roles in the care of children with complex health care needs
Kirk, Susan
(2001)
eywords:
parental involvement;children with complex health care needs;role negotiation;nursing roles;community-based care
Negotiating lay and professional roles in the care of children with complex health care needs
Background. Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).
Aims of the paper. To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.
Design. Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.
Findings. From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.
Conclusion. This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent–professional relationships that are characterized by conflict rather than partnership.
Negotiating needs : processing older persons as home care recipients in gerontological social work practices
Olaison, A.
(2009)
The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.
Negotiating needs : processing older persons as home care recipients in gerontological social work practices
Olaison, A.
(2009)
The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.
I rörelse mot hopp - hälsostödjande familjesamtal i palliativ vård
Benzein, E.,
(2008)
I sinnenas värld. Hörsel
Johansson, I., Andersson, L., Wramberg I.
(1997)
I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.
I sinnenas värld. Känsel
Hagander BM., Moback I.
(1997)
I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.
I sinnenas värld. Luktsinnet - Lukt och smak
Dannert E.
(1996)
I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.
I sinnenas värld. Rörelse, kroppsuppfattning
Feldtman K.
(1998)
I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.
I sinnenas värld. Syn
Sahlén U., Berglund L.
(1997)
I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.
I taket lyser stjärnorna
Johanna Thydell, Manus och regi Linn Gottfridsson och Lisa Siwe
(2009)
Jenna går i sjuan och borde egentligen bara behöva oroa sig över brösten som aldrig växer, varför hon inte är lika populär som Ullis-"knullis" och hur hon ska få Sakke att bli kär i henne eller åtminstone upptäcka att hon finns. När Jennas mamma drabbas av cancer är de tvungna att flytta hem till mormor, som dessutom bor granne med Ullis. Ullis bor med sin alkoholiserade mamma, och mellan flickorna växer det fram en vänskap. Detta är en film om något av det svåraste som finns; att förlora någon man älskar till döden. Men det är också en film om vänskap, identitet och faktiskt om överlevnad.
I tredje åldern med funktionshinder
Taghizadeh Larsson, Annika
(2008)
Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov. Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga. Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.
I väntan på uppehållstillstånd
Björnberg, Ulla
(2013)
Hur barn påverkas av migration är något vi har relativt liten kunskap om, både nationellt och internationellt. I Norden lever de flesta barn sina liv som barn gör mest, i en vardag som rymmer lek, skola och familjeliv. Men det finns erfarenheter som påtagligt påverkar tillvaron för vissa barn; migration är en sådan erfarenhet.
Vilka strategier utvecklar barn för att hantera sin situation i
I´m not an outsider, I´m his mother! A phenomenological enquiry into carer experiences of exclusion from acute psychiatric settings
Wilkinson, C. and S. McAndrew
(2008)
Contemporary standards and policies advocate carer involvement in planning, implementing, and evaluating mental health services. Critics have questioned why such standards and policies fail to move from rhetoric to reality, this particularly being applicable to carer involvement within acute psychiatric settings. As there is only limited UK research on this topic, this interpretive phenomenological study was undertaken to explore the perceived level of involvement from the perspective of carers of service users who were admitted to acute inpatient settings within the previous 2 years. Interviews were conducted with four individuals who cared for a loved one with a mental illness. The interview analysis was influenced by Van Manen, whose interpretive approach seeks to generate a deeper understanding of the phenomenon under study. Four main themes emerged: powerlessness, feeling isolated, needing to be recognized and valued, and a desire for partnership. The findings reflect the views expressed by carers in other studies, identifying that while carers seek to work in partnership with health-care professionals, at a clinical level they often feel excluded. The study concludes by discussing ways of improving and promoting carer involvement and advocating a partnership in care approach within acute psychiatry
I’am the king of the castle: the sibling bond – art therapy groups with siblings care.
Boronska, Teresa
(2008)
Family Obligations and Social Change
Finch, J.
(1989)
Finch discusses the nature of family life, especially concepts of duty, responsibility and obligation and how these factors operate in family and kin relationships.
Family preservation and family support programs: child maltreatment outcomes across client risk levels and program types.
Chaffin M, Bonner BL, Hill RF.
(2001)
OBJECTIVES:
This study evaluated client-level outcomes among an entire statewide group of Family Preservation and Family Support (FPFS) programs funded under PL 103-66.
METHOD:
A total of 1,601 clients (primarily low income, moderate to high risk with no current involvement in the child protection system) were assessed and followed over time for future child maltreatment events reported to Child Protective Services. The study compared program completers with program dropouts, compared recipients of more lengthy full-service programs with recipients of one-time services, and examined the effects of program duration, intensity, service site (center-based vs. home based) and service model/content. Effects were modeled using survival analysis and variable-exposure Poisson hierarchical models, controlling for initial client risk levels and removing failure events because of surveillance bias. Changes in lifestyle, economic and risk factors were also examined.
RESULTS:
A total of 198 (12.2%) participants had at least one defined failure event over a median follow-up period of 1.6 years. Controlling for risk and receipt of outside services, program completers did not differ from program dropouts or from recipients of one-time services, and there was no relationship between program intensity or duration and outcomes. Program types designed to help families meet basic concrete needs and programs using mentoring approaches were found to be more effective than parenting and child development oriented programming, and center-based services were found to be more effective than home-based services, especially among higher risk parents.
CONCLUSIONS:
The findings did not support the effectiveness of these services in preventing future maltreatment cases, and raised questions about a number of common family support assumptions regarding the superiority of home-visiting based and parent training services. A number of possible reasons for this are explored.
Family Support and Empowerment: Post Autism Diagnosis Support Group for Parents
Banach, M., J. Iudice, et al.
(2010)
Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study measured the effects of a six-session, co-facilitated, support group on the advocacy skills and self-efficacy of parents coping with a child's diagnosis. Statistically significant increases in the average mean scores for the three subscales of the Family Empowerment Scale were found. Implications for practice and research are discussed. Adapted from the source document.
Family support for stroke: a randomised controlled trial.
Mant J, Carter J, Wade DT, Winner S.
(2000)
Background
Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.
Methods
Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.
Findings
323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0·03), SF-36 scores (energy p=0·02, mental health p=0·004, pain p=0·03, physical function p=0·025, and general health perception p=0·02), quality of life on the Dartmouth co-op chart (p=0·01), and satisfaction with understanding of stroke (82 vs 71%, p=0·04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0·04), but use of other services was similar.
Interpretation
Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.
Family support for stroke: one year follow up of a randomised controlled trial.
Mant J, Winner S, Roche J, Wade DT.
(2005)
BACKGROUND:
There is evidence that family support can benefit carers of stroke patients, but not the patients themselves.
OBJECTIVE:
To extend the follow up of a single blind randomised controlled trial of family support for stroke patients and carers to one year to ascertain whether there were any late effects of the intervention.
METHODS:
The study was a randomised controlled trial. Patients admitted to hospital with acute stroke who had a close carer were assigned to receive family support or normal care. Families were visited at home by a researcher 12 months after the stroke, and a series of questionnaires was administered to patient and carer.
RESULTS:
The benefits to carers mostly persisted, though they were no longer statistically significant because some patients were lost to follow up. There was no evidence of any effects on patients.
CONCLUSION:
Family support is effective for carers, but different approaches need to be considered to alleviate the psychosocial problems of stroke patients.
Family supports and services in early intervention: A bold vision.
Turnbull AP, Summers JA, Turnbull R, Brotherson MJ, Winton P, Roberts R, et al.
(2007)
This article utilizes four knowledge sources to characterize a current gap in policy and practice related to serving families in early intervention (birth to 5) programs. It argues that the field of early intervention has focused primarily on implementing family-centered practices by focusing on how families and professionals should interact. The field has not sufficiently addressed what supports and services should be offered to families to enhance the likelihood of positive outcomes for families themselves and for their children with disabilities. The paper concludes with recommendations for enhancing policy, research, and professional development related to family services and supports.
Family therapy techniques
Minuchin, S. and H. C. Fishman
(1981)
A master of family therapy, Salvador Minuchin, traces for the first time the minute operations of day-to-day practice. Dr. Minuchin has achieved renown for his theoretical breakthroughs and his success at treatment. Now he explains in close detail those precise and difficult maneuvers that constitute his art. The book thus codifies the method of one of the country's most successful practitioners.
Family Treatment Approaches for Depression in Adolescent Males
Pruitt, I. T. P.
(2006)
Adolescent depression is a serious and common disorder. Though adolescent males are less likely to report depression than females, they have serious risks associated with the disorder, like suicide, future substance abuse, and illegal activity. Several gender differences have been observed among depressed adolescents and should be considered in assessment and treatment. Little efficacy research exists for family treatments of depression in adolescent males, though several approaches have been proposed. These approaches include Structural Family Therapy, Interpersonal Family Therapy, and Attachment-Based Family Therapy. These treatments have been found useful in clinical settings, but much more efficacy research is necessary. Adapted from the source document.
Family within a family
Sigurjónsdóttir, H B., & Traustadóttir, R.
(2010)
Family-based dementia care : Experiences from the perspective of spouses and adult children.
Jansson, W.
(2001)
Family-based dementia care : experiences from the perspective of spouses and adult children. Stockholm, Institutionen för klinisk neurovetenskap, arbetsterapi och äldreforskning (NEUROTEC)
Jansson, W.
(2001)
Family-Based Interventions for Substance Use and Misuse Prevention
Kumpfer KL, Alvarado R, Whiteside HO.
(2003)
Because "substance abuse" is a "family disease" of lifestyle, including both genetic and family environmental causes, effective family strengthening prevention programs should be included in all comprehensive substance abuse prevention activities. This article presents reviews of causal models of substance use and evidence-based practices. National searches by the authors suggest that there is sufficient research evidence to support broad dissemination of five highly effective family strengthening approaches (e.g., behavioral parent training, family skills training, in-home family support, brief family therapy, and family education). Additionally, family approaches have average effect sizes two to nine time larger than child-only prevention approaches. Comprehensive prevention programs combining both approaches produced much larger effect sizes. The Strengthening Families Program (SFP) is the only one of these programs that has been replicated with positive results by independent researchers with different cultural groups and with different ages of children. Few research-based programs have been adopted by practitioners, partly because of technology transfer issues. Overall, research on ways to improve dissemination, marketing, training, and funding is needed to improve adoption of effective prevention programs.
Family-centeredness in service and rehabilitation planning for children and youth with cerebral palsy in Finland
Jeglinsky, I.
(2012)
Objectives: The overall aim of this thesis was to explore and describe the familycentredness and rehabilitation planning procedure for children and youth with cerebral palsy (CP) in Finland. The main focus was on how professionals working with children and youth with cerebral palsy describe and document the rehabilitation planning procedure and how family-centredness was perceived by professionals and parents.
Methods: Participants were team members in neuropediatric multidisciplinary teams in central and university hospitals and government special schools as well as physiotherapy private practitioners who had an agreement with the Social Insurance Institution. Parents visiting two university hospital neuropediatric wards participated in one study (II). Family-centredness in services (FCS) was evaluated by the Measure of Processes of Care questionnaires. To get a deeper insight in the rehabilitation planning procedure, focus group interviews were conducted. Two researchers conducted the interviews which were tape recorded and transcribed. Three content areas guided the interviews: goal-setting, different transition phases and the use of the International Classification of Functioning, Disability and Health, Children and Youth version. A retrospective cross-sectional register study was used to analyze the interrelation between needs and functional difficulties and the therapeutic goals in written rehabilitation plans. The ICF-CY was used as a reference in the analysis.
Results: Professionals and parents rated the family-centred service as fair to moderate. There was a significant difference in how professionals of different disciplines rated their FCS delivery. Professionals with more than 25 years of work experience in the field of rehabilitation for children and youth with CP rated their service higher than those with shorter work experience. Parents and professionals identified common aspects in need of development, i.e. letting the family choose when and what kind of information is provided as well as providing opportunities for the whole family to obtain information. Goal setting and ways to involve families in the rehabilitation planning procedure was experienced as challenging. Collaboration with all involved in the child´s rehabilitation was partly scanty and the results indicate a lack of routines in the transition phases. In the written rehabilitation plans the goals were not well reflected in the children´s needs and functional difficulties.
Conclusion: This thesis identified examples in the rehabilitation planning procedure of good practice in which collaboration with various parties and clear formal processes occurred. Areas in need of development were also identified. Standardized formal programme processes and policies and a named care manager for all families could provide a starting point in developing and improving the services to ensure all families have the possibility to be involved in their child´s rehabilitation service.
Family-centeredness in service and rehabilitation planning for children and youth with cerebral palsy in Finland. (Doctoral dissertation),
Jeglinsky, I.
(2012)
Objectives: The overall aim of this thesis was to explore and describe the familycentredness and rehabilitation planning procedure for children and youth with cerebral palsy (CP) in Finland. The main focus was on how professionals working with children and youth with cerebral palsy describe and document the rehabilitation planning procedure and how family-centredness was perceived by professionals and parents.
Methods: Participants were team members in neuropediatric multidisciplinary teams in central and university hospitals and government special schools as well as physiotherapy private practitioners who had an agreement with the Social Insurance Institution. Parents visiting two university hospital neuropediatric wards participated in one study (II). Family-centredness in services (FCS) was evaluated by the Measure of Processes of Care questionnaires. To get a deeper insight in the rehabilitation planning procedure, focus group interviews were conducted. Two researchers conducted the interviews which were tape recorded and transcribed. Three content areas guided the interviews: goal-setting, different transition phases and the use of the International Classification of Functioning, Disability and Health, Children and Youth version. A retrospective cross-sectional register study was used to analyze the interrelation between needs and functional difficulties and the therapeutic goals in written rehabilitation plans. The ICF-CY was used as a reference in the analysis.
Results: Professionals and parents rated the family-centred service as fair to moderate. There was a significant difference in how professionals of different disciplines rated their FCS delivery. Professionals with more than 25 years of work experience in the field of rehabilitation for children and youth with CP rated their service higher than those with shorter work experience. Parents and professionals identified common aspects in need of development, i.e. letting the family choose when and what kind of information is provided as well as providing opportunities for the whole family to obtain information. Goal setting and ways to involve families in the rehabilitation planning procedure was experienced as challenging. Collaboration with all involved in the child´s rehabilitation was partly scanty and the results indicate a lack of routines in the transition phases. In the written rehabilitation plans the goals were not well reflected in the children´s needs and functional difficulties.
Conclusion: This thesis identified examples in the rehabilitation planning procedure of good practice in which collaboration with various parties and clear formal processes occurred. Areas in need of development were also identified. Standardized formal programme processes and policies and a named care manager for all families could provide a starting point in developing and improving the services to ensure all families have the possibility to be involved in their child´s rehabilitation service.
Family-Oriented Interventions for the Prevention of Chemical Dependency in Children and Adolescents
Demarsh J, Kumpfer KL.
(1986)
Researchers and clinicians are begining to recognize the valuable resource that parents and families are for increasing the effectiveness of substance abuse prevention programs for youth and adolescents. To date, however, most prevention interventions have been developed for use in community or school-based programs. There is a growing number of family-oriented interventions which have been developed specifically as substance abuse prevention programs, or may be easily adapted for use by prevention specialists. This article will review these family-oriented interventions and discuss outcome effectiveness data when available.
Family-oriented program models, helpgiving practices, and parental control appraisals
Trivette, Carol, Dunst, Carl, Boyd, Kimberly & Hamby, Deborah
(1995)
Findings from 2 studies investigating sources of variations in parents' assessment of help-giving practices and personal control appraisals are reported. A total of 280 parents of young children with disabilities or at-risk for poor developmental outcomes participated. Parents were involved in early intervention and human services programs that differed along a continuum from professionally centered to family focused. Demographic characteristics showed no relationship to either help-giving practices or perceptions of personal control. In contrast, program characteristics were highly related to help-giving practices, and both program characteristics and help-giving practices were highly related to personal control.
Fathers in neonatal units: Improving infant health by supporting the baby-father bond and mother-father coparenting
Fisher Duncan, Khashu Minesh Adama Esther A. Feeley Nancy
(2018)
Abstract
The Family Initiative's International Neonatal Fathers Working Group, whose members are the authors of this paper, has reviewed the literature on engaging fathers in neonatal units, with the aim of making recommendations for improving experience of fathers as well as health outcomes in neonatal practice. We believe that supporting the father-baby bond and supporting co-parenting between the mother and the father benefits the health of the baby, for example, through improved weight gain and oxygen saturation and enhanced rates of breastfeeding. We find, however, that despite much interest in engaging with parents as full partners in the care of their baby, engaging fathers remains sub-optimal. Fathers typically describe the opportunity to bond with their babies, particularly skin-to-skin care, in glowing terms of gratitude, happiness and love. These sensations are underpinned by hormonal and neurobiological changes that take place in fathers when they care for their babies, as also happens with mothers. Fathers, however, are subject to different social expectations from mothers and this shapes how they respond to the situation and how neonatal staff treats them. Fathers are more likely to be considered responsible for earning, they are often considered to be less competent at caring than mothers and they are expected to be "the strong one", providing support to mothers but not expecting it in return. Our review ends with 12 practical recommendations for neonatal teams to focus on: (1) assess the needs of mother and father individually, (2) consider individual needs and wants in family care plans, (3) ensure complete flexibility of access to the neonatal unit for fathers, (4) gear parenting education towards co-parenting, (5) actively promote father-baby bonding, (6) be attentive to fathers hiding their stress, (7) inform fathers directly not just via the mother, (8) facilitate peer-to-peer communication for fathers, (9) differentiate and analyse by gender in service evaluations, (10) train staff to work with fathers and to support co-parenting, (11) develop a father-friendly audit tool for neonatal units, and (12) organise an international consultation to update guidelines for neonatal care, including those of UNICEF.
Feeling heard: a support group for siblings of children with developmental disabilities
McCullough, K. and S. R. Simon
(2011)
Siblings are often overlooked in the provision of services to families of children with disabilities. These children also need education and support to ensure their own optimal development. Moreover, as funding and support services decrease, engaging siblings is paramount to the health and safety of children with developmental disabilities. Focusing on the observed therapeutic impact of the group process, this article describes and assesses a model for facilitating a support group for siblings of children with developmental delays. It advocates for significantly increased attention within the social work community to the needs of the sibling population.
Fetal alcohol spectrum disorder prevalence estimates in correctional systems: a systematic literature review.
Popova S, Lange S, Bekmuradov D, Mihic A, Rehm J.
(2011)
OBJECTIVES:
The objective of this study was to conduct a systematic search of the literature for studies that estimated the prevalence/incidence of Fetal Alcohol Spectrum Disorder (FASD) in correctional systems in different countries and, based on these data, to estimate a) the number of people with Fetal Alcohol Syndrome (FAS)/FASD within the criminal justice system population, and b) the relative risk of becoming imprisoned for individuals with FAS/FASD compared with those without FAS/FASD.
METHOD:
A systematic world literature review of published and unpublished studies concerning the prevalence/incidence of FASD in correctional systems was conducted in multiple electronic bibliographic databases.
SYNTHESIS:
Very little empirical evidence is available on the prevalence of FASD in correctional systems. There were no studies estimating the prevalence/incidence of FASD in correctional systems found for any country other than Canada and the USA. The few studies that have identified incarcerated individuals with FASD estimate that the number of undiagnosed persons in correctional facilities is high. Based on available Canadian data, this study estimates that youths with FASD are 19 times more likely to be incarcerated than youths without FASD in a given year.
CONCLUSION:
More studies investigating the prevalence/incidence of alcohol-affected people in the criminal justice system are required. There is an urgent need to raise awareness about the prevalence and disabilities of individuals with FASD in the criminal justice system and about appropriate responses. The criminal justice system is an ideal arena for intervention efforts aimed at the rehabilitation and prevention or reduction of recidivism in this unique population.
Fetal Alcohol Spectrum Disorders
Rangmar Jenny, Fahlke Claudia
(2013)
Kunskapsöversikten har skrivits på uppdrag av Socialstyrelsen. Det är en sammanställning av aktuell vetenskaplig litteratur rörande psykosociala konsekvenser av alkoholrelaterade fosterskador samt preventiva aspekter på denna typ av fosterskador.
Fetal alcohol spectrum disorders in Finnish children and adolescents. Diagnosis, cognition, behavior, adaptation and brain metabolic alterations (Akademisk avhandling).
Fagerlund Å.
(2013)
När en gravid kvinna dricker alkohol gör hennes foster det också. Eftersom det inte finns
någon skyddande blodbarriär kan alkohol fritt korsa moderkakan och orsaka omfattande
skador både fysiologiskt, neurologiskt och beteendemässigt på det växande fostret.
Alkoholrelaterade fosterskador går under den engelska termen Fetal Alcohol Spectrum
Disorders (FASD, Fetala alkohol spektrum störningar). Trots att alkoholrelaterade skador är
fullt möjliga att förhindra utgör de idag en av de vanligaste orsakerna till utvecklingsstörning
i västvärlden. I västländer där prevalensundersökningar har gjorts är antalet barn som
föds med FASD fler än de med autismspektrumstörningar, Downs syndrom eller cerebral
pares. I siffror handlar det om mellan 1 och 6 % av alla levande födda, vilket i Finland skulle
innebära att 600–3600 barn föds med alkoholrelaterade fosterskador varje år. Utöver de
direkta toxiska effekterna av alkohol utsätts barnen som föds med FASD ofta för en dubbel
börda i livet. Dels har barnen redan vid födseln neurologiska skador, dels föds de också
med stor sannolikhet in i en familj med minst en missbrukande förälder och en omgivning
där de utsätts för ytterligare risker i sin utveckling. Trots detta är FASD idag en starkt
underdiagnosticerad grupp inom hälso- och sjukvården.
Den här avhandlingen utgör en del av ett större multinationellt forskningsprojekt, The
Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD), som initierades av det
nationella institutet för alkoholmissbruk och alkoholism (National Institute of Alcohol Abuse and
Alcoholism, NIAAA) i USA. Det huvudsakliga syftet med den föreliggande avhandlingen var att
undersöka en kohort med barn och ungdomar med alkoholrelaterade fosterskador i Finland.
Avhandlingen består av fem studier med ett brett fokus på diagnos, kognition, beteende,
adaptiva färdigheter och avvikelser i hjärnans ämnesomsättning hos barn och unga med FASD.
Deltagarna bestod av fyra olika grupper: en grupp som varit utsatt för alkohol under
graviditeten (FASD); en IQ-matchad kontrollgrupp som huvudsakligen bestod av barn med
specifika inlärningssvårigheter (Specific Learning Disorder, SLD); och två grupper med normala
kontroller (CON1 och CON2). Deltagarna rekryterades via genomgång av medicinska journaler,
slumpmässigt urval ur det finska befolkningsregistret och e-postförfrågningar till studerande.
Med diagnoser som är såpass svåra att fastställa som de inom FASD-spektret är det av stor
betydelse att de föreliggande studierna har utförts i nära samarbete med ledande experter
på FASD (prof. Edward Riley och prof. Sarah Mattson från Center for Behavioral Teratology vid
San Diego State University, USA och prof. Eugene Hoyme från Sanford School of Medicine,
University of South Dakota, USA). Deltagarna i föreliggande studier är således mycket noggrant
undersökta och diagnosticerade. I den här avhandlingen testades för första gången de
amerikanska reviderade Institute of Medicines diagnoskriterier för FASD på en finsk population.
Kriterierna visade sig tillförlitliga i att särskilja olika undergrupper bland alkoholskadade barn.
Ett annat värdefullt hjälpmedel som användes vid diagnosticeringen var en speciellt utarbetad
skala för bedömning av de specifika dysmorfa dragen vid FASD (Studie 1).
Syftet med Studie 2 var att klargöra relationen mellan alkoholrelaterade dysmorfa drag och
allmän kognitiv kapacitet. Resultaten visade på en signifikant korrelation mellan dysmorfa
drag och kognitiv kapacitet, så att barn med större avvikelser i sin tillväxt och med mer
dysmorfa drag också tenderade att uppvisa större kognitiva svårigheter. Sambandet var
emellertid måttligt och det kan betonas att fysiologiska markörer och kognitiv kapacitet inte
alls alltid går hand i hand hos individer med FASD.
Barnen och ungdomarna i FASD-gruppen uppvisade omfattande problem i beteende och
mental hälsa jämfört med kontrollgruppen (CON1). I studie 3 utforskades närmare hurudana
risk- och skyddande faktorer som kunde associeras med beteendeproblemen i FASD-gruppen.
Studien fokuserade på diagnosrelaterade och omgivningsrelaterade faktorer. Resultaten visade
att två grupper med förhöjd risk för beteendeproblem kunde urskiljas: 1) Ju längre tid ett barn
hade spenderat intaget på barnhem desto högre risk för beteendeproblem och 2) ju mindre
dysmorfa drag ett barn med FASD hade desto mer omfattande beteendeproblem uppvisade
barnet. Resultaten understryker betydelsen av att inom hälso- och sjukvården uppmärksamma
och ge vård och adekvata insatser också (eller framför allt) till mindre synligt alkoholskadade
barn. Det är också av stor vikt att uppmärksamma behoven och välmåendet hos de barn med
FASD som växer upp på olika former av barnhem. För dessa barn verkar kombinationen av
medfödda fysiologiska och psykologiska skador tillsammans med minskad möjlighet till en nära
och kontinuerlig relation till en närstående vuxen göra dem extra utsatta och sårbara i livet.
Studie 4 fokuserade på adaptiva färdigheter så som kommunikationsförmåga, förmåga att
klara ett dagligt liv och sociala förmågor. Adaptiva färdigheter handlar med andra ord om
förmågor som gradvis hjälper en individ att klara ett självständigt liv, upprätthålla sociala
relationer och integreras i samhället. Resultaten visade att de adaptiva färdigheterna hos
barn och unga som växer upp med FASD är avsevärt sämre än hos både normalt utvecklade
barn och IQ-matchade barn med inlärningssvårigheter. Klart skilda adaptiva profiler
uppdagades där FASD-gruppen klarade sig sämre än barnen med inlärningssvårigheter
som i sin tur klarade sig sämre än barnen i den normala kontrollgruppen. Det är viktigt att
poängtera att barnen med inlärningssvårigheter presterade bättre än FASD-gruppen trots
att de kognitivt befann sig på samma nivå. Den här studien är den första att jämföra adaptiva
förmågor hos en grupp barn och unga med FASD jämfört med både en grupp IQ-matchade
barn med inlärningssvårigheter och en grupp normalt utvecklade barn.
Slutligen påvisades i studie 5 neurokemiska förändringar med hjälp av magnetisk resonansspektroskopi
(MRS) hos tonåringar och unga vuxna med FASD som kunde relateras till
alkoholbruk under fosterstadiet 14–20 år tidigare. De neurokemiska förändringarna kunde
påvisas i ett flertal områden i hjärnan: i den frontala och parietala hjärnbarken, i corpus
callosum, thalamus, i frontala områden med vit substans samt i lilla hjärnans nucleus dentatus.
Förändringarna stämmer överens med den neuropsykologiska profilen vid FASD. Glia celler (vit
hjärnsubstans) verkade mer påverkade av alkohol under fosterstadiet än neuron (nervceller).
Sammantaget kan konstateras att större samhälleliga ansträngningar och resurser borde
fokuseras på att känna igen och diagnosticera FASD och på att stöda speciellt utsatta
riskgrupper av alkoholskadade barn och unga. Utan tillräcklig intervention och stöd löper
de en stor risk för marginalisering och utslagning, vilket är kostsamt inte bara för samhället
utan också för de många barn som växer upp med FASD.
Fetal alcohol spectrum disorders: an over- view
Riley EP, Infante MA, Warren KR.
(2011)
When fetal alcohol syndrome (FAS) was initially described, diagnosis was based upon physical parameters including facial anomalies and growth retardation, with evidence of developmental delay or mental deficiency. Forty years of research has shown that FAS lies towards the extreme end of what are now termed fetal alcohol spectrum disorders (FASD). The most profound effects of prenatal alcohol exposure are on the developing brain and the cognitive and behavioral effects that ensue. Alcohol exposure affects brain development via numerous pathways at all stages from neurogenesis to myelination. For example, the same processes that give rise to the facial characteristics of FAS also cause abnormal brain development. Behaviors as diverse as executive functioning to motor control are affected. This special issue of Neuropsychology Review addresses these changes in brain and behavior highlighting the relationship between the two. A diagnostic goal is to recognize FAS as a disorder of brain rather than one of physical characteristics.
Fetal alcohol syndrome and the developing socio-emotional brain
Niccols A.
(2007)
Fetal alcohol syndrome (FAS) is currently recognized as the most common known cause of mental retardation, affecting from 1 to 7 per 1000 live-born infants. Individuals with FAS suffer from changes in brain structure, cognitive impairments, and behavior problems. Researchers investigating neuropsychological functioning have identified deficits in learning, memory, executive functioning, hyperactivity, impulsivity, and poor communication and social skills in individuals with FAS and fetal alcohol effects (FAE). Investigators using autopsy and brain imaging methods have identified microcephaly and structural abnormalities in various regions of the brain (including the basal ganglia, corpus callosum, cerebellum, and hippocampus) that may account for the neuropsychological deficits. Results of studies using newer brain imaging and analytic techniques have indicated specific alterations (i.e., displacements in the corpus callosum, increased gray matter density in the perisylvian regions, altered gray matter asymmetry, and disproportionate reductions in the frontal lobes) in the brains of individuals prenatally exposed to alcohol, and their relations with brain function. Future research, including using animal models, could help inform our knowledge of brain-behavior relations in the context of prenatal alcohol exposure, and assist with early identification and intervention.
FIB-projektet i Uppsala län. Föräldrar med intellektuella begränsningar. Kartläggning av målgruppen 2005-2008
Pistol, Sven-Erik
(2009)
FIB-projektet är ett 3-årigt samverkansprojekt i Uppsala län som syftar till att
utveckla stöd till barn och deras föräldrar i familjer där någon av föräldrarna har
en utvecklingsstörning eller andra kognitiva svårigheter, som kan förekomma
vid t.ex. svagbegåvning eller neuropsykiatriska funktionsnedsättningar.
För att kunna bedöma omfattningen av stödbehov och planera utifrån det, är det
viktigt att veta hur många familjer det finns som tillhör målgruppen och hur
många barn de har. En del i projektet har därför varit att göra en kartläggning av
målgruppens storlek i Uppsala län.
En bred förankring på olika nivåer i Landstingets och kommunernas
organisationer har krävts för att kunna genomföra kartläggningen.
Olika grupper av professionella, som möter familjerna i sin yrkesutövning, har
gjort bedömningen av vilka som tillhör målgruppen och som är i behov av
anpassat stöd.
Resultatet av kartläggningen bekräftar det som yrkesverksamma i olika
sammanhang omtalat, nämligen att det finns ett stort antal barn och föräldrar
med behov av stöd på grund av kognitiva svårigheter hos någon av föräldrarna.
Totalt handlar det om 602 familjer med sammanlagt 1092 barn som bedöms vara
i behov av stöd på grund av föräldrarnas kognitiva svårigheter. Mer än 50 % av
barnen har egna kognitiva svårigheter.
Den variation vi kan konstatera mellan länets olika kommuner kan bero på
befolkningsstruktur, förekomst av särskola, tidigare befintliga institutioner och
tillgång på bostäder och sysselsättning.
Kartläggningen ger ett underlag för planeringen av insatser till familjerna. Den
visar hur många familjer och barn det finns och kan hos olika verksamheter
ställas i relation till de riktade insatser som görs. Kartläggningen ger också ett
underlag för ökad samverkan och samplanering mellan olika samhällsinstanser
då många professionella arbetar med samma familjer utan varandras kännedom.
Fickfakta 2010. Statistik om integration
Arbetsmarknadsdepartementet
(2010)
Filial Piety, Caregiving Appraisal, and Caregiving Burden
Lai, D. W. L.
(2010)
This study examined the effects of filial piety on the appraisal of caregiving burden by Chinese-Canadian family caregivers. A quantitative telephone survey was used as the research design for this study. A total of 339 randomly selected Canadian-Chinese family caregivers of elderly were interviewed by telephone. A hypothesized model denoting both the direct and indirect effects of filial piety on caregiving burden was tested using structural equation modeling. While stressors and appraisal factors reported direct predicting effects on caregiving burden, filial piety indirectly affected caregiving burden by altering appraisals of the caregiver role. Filial piety served as a protective function to reduce the negative effects of stressors and to enhance the positive effect of appraisal factors on caregiving burden.
Filial responsibility: does it matter for care-giving behaviours?
Chappell, N. L. and L. Funk
(2012)
This paper examines the relationship between attitudes of filial responsibility and five different types of care-giving behaviours to parents among three cultural groups. It does so within an assessment of the relative importance of cultural versus structural factors for care-giving behaviours. Face-to-face interviews were conducted with 100 Caucasian-Canadians, 90 Chinese-Canadians and 125 Hong Kong-Chinese. Multiple regression analyses assessed the association of cultural and structural factors with behaviours among the total sample and each of the three cultural groups. Limited support was found for an association between care-giving attitudes and care-giving behaviours. Attitudes are related to emotional support only among the two Chinese groups as well as to financial support among Chinese-Canadian respondents and to companionship among Hong Kong-Chinese respondents. Attitudes are not the strongest predictors and are unrelated to assistance with basic and instrumental activities of daily living. However, cultural group per se is a strong predictor of care-giving behaviours as are: parental ill health, living arrangements, and relationship quality. This study suggests gerontological assumptions about the role of societal norms and personal attitudes in parental care-giving should be questioned. It also suggests the need for further inquiry into unpacking those aspects of 'cultural group' that are related to behavioural differences, and the importance of examining multiple types of care-giving behaviours and of distinguishing task-oriented helping behaviour from other types of assistance.
Filosofins grunder
Ekman, R.
(1979)
Finansiell och politisk samordning i den lokala välfärden: En ny politisk arena för gemensamma prioriteringar mellan huvudmän. CEFOS rapport nr. 20.
Fridolf, M.
(2004)
I denna rapport beskrivs politikeruppdraget vid politisk och finansiell samordning. Vid samordning samlas resurser över organisationsgränser för att användas gemensamt. Det unika med politisk och finansiell samordning är att huvudmännen har ett gemensamt kostnadsansvar. Resurserna kan omfördelas mellan huvudmän. Politisk samordning innebär att en politisk arena skapas som prioriterar resurser över organisationsgränser. I rapporten påvisas att politikeruppdraget skiljer sig mycket åt beroende på vilken inriktning som finns på olika områden; mot samordningsperspektiv eller befolkningsperspektiv. Inriktningen har skapats av vald struktur men också av hur aktörerna ser på sin roll och dess utövande. En ny struktur skapas på den parlamentariska arenan. I denna samordning betonas politikernas roll. Rollskillnader utvecklas dock mellan olika politiker, vilket gör att de får olika betydelse och status. Detta påverkar i sin tur deras inflytande. En samförståndspolitik utvecklas, där politikerna inte driver partipolitik. Genom politisk samordning skapas förutsättningar för gemensamma prioriteringar av behov. Den nya strukturen påverkar politikerna som aktörer i samtliga områden.
I rapporten återges ambitioner med finansiell och politisk samordning samt hur en ny politisk struktur skapas. Dessutom beskrivs politikernas motiv till engagemang, hur de ser på sin uppgift samt hur politisk organisering genom behovsidentifiering, prioritering, resursmobilisering och utvärdering utvecklas. Studien behandlar också politikernas betydelse för samarbete mellan chefer och professionella.
Finding care for the caregiver? Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing
Tanis M, Das E, Fortgens-Sillmann M.
(2011)
This paper focuses on how online health forums may benefit the wellbeing of caregivers. An online questionnaire of caregivers assessed caregiver strain, forum use, and mental and physical wellbeing. Results show a positive relation between caregiver strain and using online health forums to seek emotional support. Furthermore, we find that caregivers with higher levels of caregiver strain report lower mental and physical wellbeing. This relation is however moderated by using online health forums. While the amount of time spent on the online forums did not moderate the relation between caregiver strain and wellbeing, the amount of activity (i. e. the number of messages posted per week) did: Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing. These findings suggest that online forums are valuable for caregivers and that it is active contribution that matters, rather than simply visiting the online health groups.
Finns kvar och ställer upp : Hur anhöriga kan bidra till återhämtning från allvarlig psykisk störning, hur de återhämtades och de anhörigas perspektiv (Anhörig 300)
Socialstyrelsen
(2002)
Finns kvar och ställer upp. Hur anhöriga kan bidra till återhämtning från allvarlig psykisk störning, ur de anhörigas och återhämtades perspektiv
Socialstyrelsen
(2002)
Flexibel avlösning för anhöriga till långvarigt sjuka personer, projektredovisning
Jonsson, I.
(2002)
Flickan och kajorna
Riita Jalonen, Kriistina Louhi
(2005)
En flicka står under ett träd utanför tågstationen. Hennes mamma är inne och köper biljetter för att de ska resa bort. Flicka tittar på kajorna i trädet hon står under, tänker på saknad och minnen av pappa som är död. Hon tänker på vad de gjorde, vad hon minns av honom och hur det känns inuti att ha en pappa som är död. Hennes tankar vindlar över sidorna, från det ena till det andra, men saknade efter pappa går som en röd tråd genom boken. Stora mättade bilder illustrerar boken. Boken passar barn från 5 år.
Focusing on parental and young people's substance misuse: exploring the links
Harwin J.
(2008)
Fokus på frivillighet med och för äldre : En kartläggning av frivilligmedverkan i omsorg och vård om äldre och deras familjer
Ljunggren, A.
(2002)
Fokus på frivillighet med och för äldre : En kartläggning av frivilligmedverkan i omsorg och vård om äldre och deras familjer
Ljunggren, A.
(2002)
Fokus på mig, Vuxensyskon. Samtalsmaterial
Bräcke diakoni
(2021)
Samtalsmaterialet "Fokus på mig, Vuxensyskon" är en del av Projekt Vuxensyskon.
Känner du igen dig?
• Har du svårt att veta vilket ansvar du har för ditt syskon?
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• Får du dåligt samvete när du tänker på ditt syskon?
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"Fokus på mig, Vuxensyskon" är till för dig som är syskon till någon
med funktionsnedsättning eller sjukdom. Samtalsmaterialet innehåller
berättelser, teman, övningar och frågeställningar där förhoppningen
är att ge igenkänning, hopp och förståelse för sig själv.
Fokusgrupp Växelvård . Utveckling av anhörigstöd
Gretener B, Malmström B, Pettersson K.
(2009)
Folkhälsa i samverkan mellan professioner, organisationer och samhällssektorer.
Axelsson, R., Bihari Axelsson, S.
(2007)
Folkhälsan i Sverige – Årsrapport 2013
Socialstyrelsen & Statens folkhälsoinstitut
(2013)
Socialstyrelsens och Statens folkhälsoinstituts rapport ger en aktuell och översiktlig bild av hälsoutvecklingen och dess bestämningsfaktorer. Den visar bland annat att bland kvinnor och män 35-44 år har risken att få stroke ökat med 21 respektive 15 procent sedan 1995
Folkhälsorapport
Socialstyrelsen
(2009)
Folkhälsorapport 2009 visar bland annat att risken att dö i hjärtinfarkt och stroke har minskat väsentligt, medan dödligheten i bröstcancer däremot har minskat endast marginellt, och dödligheten i lungcancer fortfarande ökar bland kvinnor, medan den sjunker bland män. Psykisk ohälsa är vanligt hos yngre kvinnor; självmordsförsöken ökar.
For better or worse: Factors predicting outcomes of family care of older people over a one-year period. A six-country European study
Lüdecke Daniel, Bien Barbara, McKee Kevin, Krevers Barbro
(2018)
Abstract [en]
OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period.
METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up.
RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change.
DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.
For better or worse: Factors predicting outcomes of family care of older people over a one-year period. A six-country European study.
Lüdecke D., Bien B., McKee K., Krevers B., Mestheneos E., Di Rosa M.
(2018)
OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period. METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries
(Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up. RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia
diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems
(OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely
to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change. DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.
Forensic care for victims of violence and their family members in the emergency department
Rahmqvist Linnarsson, Josefin
(2018)
Doktorsavhandling
Aim: To explore forensic care in EDs for victims of violence and their family members from the perspectives of ED department heads, ED nurses, and a family member of a victim of violence. Methods: Study I consisted of a questionnaire to all heads of EDs in Sweden, data were analyzed with descriptive statistics. Study II consisted of a similar questionnaire which also included the instrument Families' Importance in Nursing Care-Nurses' Attitudes. It was sent to all nurses at 28 EDs and data were analyzed using descriptive statistics, multiple linear and ordinal regression analysis. Study III comprised of individual interviews with twelve nurses from seven EDs and data were analyzed with content analysis. Study IV was a single case study with two interviews with a family member of a victim of violence. Data were analyzed with a Gadamer-inspired hermeneutic approach. Results: ED preparedness for forensic care varied and was often limited to women and children. Nurses played a key role, but most of them had no training for this task and felt uncertain (I, II, III). Creating a caring encounter was the main challenge for providing forensic care and nurses perceived hindering factors to overcome this challenge (III). Family members were rarely included in forensic care and nurses perceived that family members were offered little help (I-III). Having ED documents that included family members, was associated with a more positive attitude to family members, which in turn was associated with involving them in care (II). For the family member, perfunctory encounters and caring alliances had a major impact and the experience reframed life (IV). Conclusion: Lack of preparedness in EDs to care for all types of victims of violence and differences between individual nurses may prohibit the provision of equal care. Hindering factors for a caring encounter can result in forensic care being unaddressed, which may limit possibilities for alleviated suffering and legal justice. Family members were rarely included in forensic care, but caring encounters can be crucial for the family member in the aftermath of violence
Formal and informal care in an urban and a rural elderly population : Who? When? What?
Nordberg, G.
(2007)
Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study
Lethin C, Leino-Kilpi H, Roe B, Soto MM, Saks K, Stephan A, Zwakhalen S, Zabalegui A, Karlsson S;
(2016)
BACKGROUND: In European countries, knowledge about availability and utilization
of support for informal caregivers caring for older persons (≥65 years) with
dementia (PwD) is lacking. To be able to evaluate and develop the dementia
support system for informal caregivers to PwD, a survey of European support
systems and professionals involved is needed. The aim of this study was to
explore support for informal caregivers to PwD in European countries. We
investigated the availability and utilization of support in each of the
participating countries, and the professional care providers involved, through
the dementia disease.
METHODS: A mapping system was used in 2010-2011 to gather information about
estimations of availability, utilization, and professional providers of support
to informal caregivers caring for PwD. Data collected was representing each
country as a whole.
RESULTS: There was high availability of counselling, caregiver support, and
education from the diagnosis to the intermediate stage, with a decrease in the
late to end of life stage. Utilization was low, although there was a small
increase in the intermediate stage. Day care and respite care were highly
available in the diagnosis to the intermediate stage, with a decrease in the late
to end of life stage, but both types of care were utilized by few or no
caregivers through any of the disease stages. Professionals specialized in
dementia (Bachelor to Master's degree) provided counselling and education,
whereas caregiver support for informal caregivers and day care, respite care, and
respite care at home were provided by professionals with education ranging from
upper secondary schooling to a Master's degree.
CONCLUSIONS: Counselling, caregiver support, and education were highly available
in European countries from diagnosis to the intermediate stage of the dementia
disease, decreasing in the late/end of life stages but were rarely utilized.
Countries with care systems based on national guidelines for dementia care seem
to be more aware of the importance of professionals specialized in dementia care
when providing support to informal caregivers. Mapping the systems of support for
informal caregivers of PwD is a valuable tool for evaluating existing systems,
internationally, nationally and locally for policy making.
Forskning som speglar vården i livets slutskede. Sammanställning av aktuell forskning, underlag från experter
Ternestedt, B.-M.
(2007)
Forskningscirkeln: Att stärka barns och ungdomars brukarmedverkan i den sociala barnavården
Näsman, E.
(2012)
Fortbildning av förskolekonsulenter i familjeorienterad habilitering: process och utfall
Granlund, Mats & Björck-Åkesson, Eva
(1994)
ICF - en grund för tvärprofessionell journaldokumentation
SoS
(2006)
När IT-stöden i vården utvecklas blir behovet av enhetliga begrepp och termer mera påtagligt. Detta betonas särskilt i såväl InfoVU-projektets slutrapport som i regeringens Nationella IT-strategi för vård och omsorg.
Flera landsting, sjukhus, kliniker och privata vårdgivare har under de senaste åren valt att använda Världshälsoorganisationen WHOs International Classification of Functioning, Disabilty and Health (ICF) som utgångspunkt för gemensamma termer och begrepp, vid införande av elektroniska journalsystem. ICF ingår i WHOs Family of International Classifications med det uttalade syftet att dels komplettera sjukdomsklassifikationen ICD, dels tillhandahålla ett tvärprofessionellt språk för att beskriva hälsa.
Syftet med förstudien är att få besked om ICF kan ligga till grund för fortsatt arbete med struktur och terminologi för ändamålsenlig vård- och omsorgsdokumentation och tydliggöra likheter och skillnader i dagens användning av ICF i e-journaler.
En enkät med förfrågan om man använder ICF skickades till Socialstyrelsens kontaktnätverk för terminologifrågor. Totalt inkom 36 svar varav 29 fördelade sig på 17 olika landsting, två svar kom från kommuner, fyra svar kom från privata företag och ett svar från en yrkesorganisation. I 13 av svaren angavs att man på något sätt använde, eller planerade att använda, ICF som underlag för struktur och innehåll i e-journalen. Ett kontaktnätverk för erfarenhetsutbyte etablerades och två arbetsseminarier genomfördes med syftet att besvara förstudiens frågeställningar.
I Danmark och Norge har man baserat på ICF utvecklat underlag för insamling av individbaserad vård- och omsorgsstatistik.
Inom ramen för InfoVU-projektet genomfördes tre olika försök baserade på ICF: webbaserad checklista för vårdplanering och överföring av information mellan olika vård- och omsorgsgivare, formulering av behov inom kommunal äldreomsorg samt individbaserad verksamhetsuppföljning.
De professionella organisationerna för arbetsterapeuter, sjukgymnaster och sjuksköterskor har, baserat på ICF, utarbetat förslag till en tvärprofessionell klassifikation för insatser och åtgärder, som ska ingå i Socialstyrelsens Klassifikation av vårdåtgärder (KVÅ).
I landstinget i Värmland och i Västmanlands läns landsting har man tagit beslut på att basera e-journalens struktur och innehåll på ICF. I vårdföretaget Kvalita AB är e-journalen sedan flera år tillbaka baserad på ICF. Inom andra landsting och regioner har man tagit delar av ICF som grund för dokumentationen. Rehabmedicin i Jönköping är ett exempel där ICF ligger till grund för den tvärprofessionella rehabiliteringsplanen.
Vid Karolinska Institutet och vid Örebro universitet används ICF i utbildningen av sjukgymnaster och arbetsterapeuter och som ramverk till forskningen inom respektive område.
Socialstyrelsen har beskrivit vård- och omsorgsassistenternas kvalifikationer med hjälp av ICFs struktur och innehåll.
Det råder konsensus, bland representanterna för de olika verksamhetsområden och professioner som deltagit i förstudien, om att ICF är en bra utgångspunkt för att uppnå en tvärprofessionell vård- och omsorgsdokumentation - en dokumentation som språkligt och innehållsmässigt kan vara en brygga mellan socialtjänst och hälso- och sjukvård.
Erfarenheter från drift, försök och andra tester visar att ICF behöver kompletteras. ICF saknar bl.a. begrepp för att beskriva vårdförlopp, t.ex. kontaktorsak och sjukhistoria. Ärftlighet och tidigare erfarenheter av vård och omsorg är annat som inte finns i ICF.
Språkliga anpassningar måste göras för att ICF ska bli användbar i vård och omsorgsdokumentationen, t.ex. genom att långa och otympliga begreppsbenämningar ges enklare, mera hanterbara s.k. "trivialnamn".
Det finns likheter och skillnader i användandet. Omfattningen av ICF begrepp som förts in i journaldokumentationen varierar. I några fall använder man i princip bara ICF-komponenterna på en övergripande nivå, medan andra byggt upp detaljerade sökordsstrukturer (ca 1000 begrepp). Några använder ICF mycket konsekvent medan andra blandar ganska friskt mellan traditionella sökord och ICF.
Förstudien pekar på följande områden som utgångspunkt för fortsatt arbete med ICF som grund för ändamålsenlig vård- och omsorgsdokumentation:
samordna arbetet inom ramen för den nationella informationsstrukturen och det nationella terminologiarbetet
tillvarata erfarenheterna av praktiska tillämpningar och försök
rikta information, utbildning och förankring till vård- och omsorgens huvudmän och deras personal
tillvarata de berörda yrkesorganisationernas kunskap och intresse att medverka till den tvärprofessionella dokumentationen.
Om Sverige beslutar om att gå med i SNOMED CTs internationella utvecklingsarbete och samtidigt väljer att basera den tvärprofessionella dokumentationen på ICF, är det viktigt att se till att ICFs struktur och terminologi införlivas i SNOMED CT
Oberoende av vilken begreppsstruktur som väljs för den tvärprofessionella e-journalen måste det finnas en etablerad organisation för förvaltning och underhåll. Socialstyrelsens termbank kan vara en del av denna resurs.
ICF and ICF-CY lessons learned: Pandora’s box of personal factors. Disability and Rehabilitation.
Simeonsson RJ, Lollar D, Björck-Åkesson E, Granlund M, Brown SC, Zhuoying Q, et al.
(2014)
Purpose: The aim of this article is to examine the component of "personal factors" described as a contextual factor in the ICF and ICF-CY. Methods: A critical examination of the construct of "personal factors" and description of the component was made with reference to conceptual and taxonomic criteria. Results: The "personal factors" component in the ICF/ICF-CY is not defined, there is no taxonomy of codes, there is no explicit purpose stated for its use and no guidelines are provided for its application. In spite of these constraints, the component of "personal factors" is being applied as part of the classifications. Such uncontrolled applications constitute significant risks for the status of ICF/ICF-CY as the WHO reference classification in that: (a) the component is accepted for use by default simply by being applied; (b) component content is expanded with idiosyncratic exemplars by users; and (c) there is potential misuse of "personal factors" in documenting personal attributes, including "blaming the victim". Conclusion: In the absence of formal codes, any application of the component of "personal factors" lacks the legitimacy that documentation with a scientific taxonomy should provide. Given the growing use of the ICF/ICF-CY globally, a priority for the revision process should be to determine if there is in fact need for "personal" or any other factors in the ICF/ICF-CY.
Implications for Rehabilitation
A central contribution of the ICF/ICF-CY is the universal language of codes for the components of body structure, body function, activities and participation and Environmental Factors.
As such the codes provide taxonomical legitimacy and power for documenting dimensions of functioning and disability in clinical and rehabilitation contexts.
As there are no codes of "personal factors", there is no basis for documentation of the component.
Demographic information, if needed for identification, should be recorded in customary formats, independent of any component or codes of the ICF/ICF-CY.
ICF Core Sets. Manual for Clinical Practice
Bickenbach JE, Cieza A, Rauch A, Stucki G.
(2012)
ICF och ICF-CY - Historik och utveckling
Björck-Åkesson E, Granlund M, Simeonsson RJ.
(2011)
Det har hittills saknats en bok för alla som vill veta mer om ICF (International Classification of Functioning, Disability and Health) och dess barn- och ungdomsversion ICF-CY. Boken vänder sig till olika grupper av läsare och är därför indelad i tre nivåer beroende på vilket djup av information man söker. En grupp läsare är de som vill ha en introduktion till vad ICF är för att sen kanske använda den som en tankemodell. En annan grupp är de som beslutat sig för att verkligen förstå ICF som klassifikation med struktur och språk. En tredje grupp läsare är de som vill lära sig "att koda information enligt ICF" i exempelvis forskning. Oavsett vilken grupp man tillhör så behöver man veta hur ICF är uppbyggd och hur den kan användas i olika situationer. Vi hoppas att denna handbok ska möta alla dessa behov. I boken har läsaren möjlighet att själv pröva ICF och läsa hur andra gjort. Läsarens befattning, förkunskaper, yrke och verksamhet kan variera, liksom vad man studerar.
Tillsammans har bokens elva författare gedigen praktisk erfarenhet av att använda ICF och ICF-CY samt specialiserad erfarenhet av att utveckla och pröva användbarheten av ICF och ICF-CY, bland annat på uppdrag av Världshälsoorganisationen, WHO.
Iconicity in the development of picture skills: typical development and implications for individuals with severe intellectual disabilities
Stephenson, J.
(2009)
The iconicity of graphic symbols and the iconicity hypothesis are theoretical concepts that have had an impact on the use of augmentative and alternative communication strategies for people with severe intellectual disabilities. This article reviews some of the recent literature on the impact of iconicity on symbol recognition and use by typically developing children and relates those findings to people with severe disability. It seems that although iconicity may have some impact on symbol learning, there are other variables that are likely to be much more important. It is likely that iconicity is not helpful to those learning graphic symbols who have little or no comprehension of spoken language.
Identification of core functioning features for assessment and intervention in Autism Spectrum Disorders
Castro S, Pinto AI.
(2013)
Purpose: Framed within a biopsychosocial approach, this study aimed to identify the main functionality dimensions that experts in the field of child development and child psychopathology considered as essential in the assessment-intervention process with young children with Autism Spectrum Disorders (ASD), using the International Classification of Functionality, Disability and Health for Children and Youth. Method: The Delphi method was used to obtain consensus among experts regarding the essential functionality features for the rehabilitation of young children with ASD. Therefore, web-based three-round survey was developed. Results: There are more functionality features identified as more essential for the age group 3–6 than from the group birth-2 years of age. 49.4% of activities and participation dimensions were regarded as essential by experts, while only 13.9% of body functions were selected. 39.9% of environmental factors were also marked by experts as essential. Conclusions: Pervasive Developmental Disorders (PDD) are classified in diagnostic manuals-DSM-IV-TR and ICD-10. These classifications are valuable to detect signs/symptoms of health conditions; however, they are often not sufficient to develop individualized interventions. More functional information is needed to complement diagnostic data. The identified functionality dimensions of the ICF-CY complement diagnosis by differentiating relevant functioning aspects in all life domains, according to the biopsychosocial model and should always be addressed in the process of rehabilitation of young children with ASD.
Implications for Rehabilitation
The biopsychosocial approach is the most complete way of conceptualizing human development and disability; combining medical, social and functional perspectives.
The ICF-CY specifies strengths and areas for improvement in the functionality of each individual, according to the biopsychosocial model of disability.
This paper identifies core functioning features for the rehabilitation of young children with Autism Spectrum Disorders, in all dimensions of life, according to the biopsychosocial approach to disability.
Identification of intentional communication in students with severe and multiple disabilities
Iacono T, Carter M, Hook J.
(1998)
The use of published criteria to determine the intentionality of communicative behaviors of individuals with severe and multiple disabilities is discussed in light of research with individuals with and without intellectual disability. Data were collected from four young students with severe intellectual and physical disabilities in addition to sensory deficits. Communicative sampling procedures were used to explore how behaviors other than co-ordinated attention may signal emerging intentionality. These behaviors, which included persistence, idiosyncratic behaviors, and modifications to signals, in addition to patterns of differential modality use, are discussed as potential indicators. Implications for the identification and development of intentional communication in children with severe and multiple disabilities are discussed, along with directions for future research.
Identifying child functioning from an ICF-CY perspective: Everyday life situations explored in measures of participation
Adolfsson M, Malmqvist J, Pless M, Granlund M.
(2011)
Purpose. This study was part of a larger work to develop an authentic measure consisting of code sets for self- or proxy-report of child participation. The aim was to identify common everyday life situations of children and youth based on measures of participation.
Method. The study was descriptive in nature and involved several stages: systematic search of literature to find articles presenting measures for children and youth with disabilities, identifying measures in selected articles, linking items in included measures to the ICF-CY, analysing content in measures presented as performance and participation and identifying aggregations of ICF-CY codes across these measures.
Results. A large number of measures for children and youth with disabilities were identified but only 12 fulfilled the inclusion criteria. A slight distinction in content and age appropriateness appeared. Measures presented as performance covered all the ICF-CY Activities and Participation chapters, whereas measures presented as participation covered five of nine chapters. Three common everyday life situations emerged from the measures: Moving around, Engagement in play and Recreation and leisure.
Conclusion. Only a small number of life situations for children and youth emerged from items in selected measures, thus, other sources are needed to identify more everyday life situations.
Identifying expressions of pleasure and displeasure by persons with profound and multiple disabilities
Petry, K., & Maes, B.
(2006)
Abstract
BACKGROUND:
The aim of this study was to explore a procedure for drafting individualised profiles of how people with profound multiple disabilities express pleasure and displeasure.
METHOD:
There were 6 participants with profound multiple disabilities. The procedure involved an observational analysis of videotaped critical incidents by a researcher and a questionnaire for parents and support workers.
RESULTS:
The procedure is useful for making an individualised profile of the ways a person with profound multiple disabilities expresses his/her pleasure and displeasure. Despite the significant correlation between parents, support workers and the researcher, each has a complementary contribution to make in identifying affective expressions. People with profound multiple disabilities especially use sounds and facial expressions to express pleasure and displeasure and positive or negative moods.
CONCLUSIONS:
The procedure may be useful in services or schools for learning more about the affective communication of these individuals, to determine their specific interests, and to evaluate the effects of living and support characteristics on their wellbeing.
Identifying the needs of carers in mental health services
Gregory, N., Collins-Atkins, C., Macpherson, R., Ford, S., & Palmer, A.
(2006)
Identifying Themes Regarding the Benefits and Limitations of Caregiver Support Group Conversations
Golden, M. A. & Lund, D. A.
(2009)
Idrott och funktionsnedsättning ur ett tillgänglighetsperspektiv. Lika värde-konferensen 2014 Forum för specialpedagogik
Jerlinder K, Hammar L, editors
(2014)
Ifrågasatta fäder. Olika bilder av fäder till socialt utsatta barn
Bangura Arvidsson, M.
(2003)
Faderskap är en familjepolitisk angelägenhet där staten går in och intervenerar och på så sätt fostrar fäder. Tyngdpunkten ligger på att uppmuntra fadersnärvaro och att förmå frånvarande fäder att ta ansvar för sina barn. Detta ger oss en bild av vad som uppfattas som bra fäder och vad som avviker från normen. Den sociala barnavården är en kontext som verkar inom den socialpolitiska, men på ett mer direkt sätt griper in i individens liv. I litteratur och forskning inom socialt arbete framstår ifrågasatta fäder som frånvarande i dubbel bemärkelse. Att de knappast syns i litteraturen förstärker en allmän uppfattning om att fäder till socialt utsatta barn är frånvarande även för sina barn. Många fäder är förvisso frånvarande, men en annan anledning till att ifrågasatta fäder inte syns är modersfixering och kvinnodominans inom den sociala barnavården. I avhandlingen presenteras olika bilder av ett faderskap som är relativt outforskat, nämligen ifrågasatta fäder, alltså fäder vars barn utretts av sociala myndigheter. Utifrån studier av 40 barnavårdsutredningar och intervjuer med 13 socialsekreterare (på två socialkontor) och 19 pappor ges bl.a. svar på vad det står skrivet om fäder i socialtjänstens utredningar; hur socialsekreterare ser på sitt arbete vad gäller fäder; samt hur pappor till socialt utsatta barn upplever sitt eget faderskap, relationen till sina barn och kontakten med sociala myndigheter. Bilderna av ifrågasatt faderskap i de tre delstudierna, men i synnerhet de bilder som kom fram i intervjuerna med socialsekreterarna och papporna, präglas av kluvenhet och ambivalens. Det beror på olikheter mellan den familjepolitiska kontexten och den kontext som den sociala barnavården omfattas av, i tolkningarna av vad som är barns bästa när det gäller kontakt med sina fäder. Bilden av fäder i barnavårdsutredningarna framstod som fragmentarisk och bristfällig, men i den information som fanns framkom en uppfattning om att barn behöver fäder. De bilder som skymtade fram var av fäder som å ena sidan närvarande, ansvarsfulla, och till glädje för barnet, å andra sidan oansvariga, våldsamma, i konflikt med barnets mor, skrämmande, frånvarande och efterlängtade. Jag urskiljde tre teman för vad ett gott faderskap innebär. Dessa är närvaro, ansvar och gränssättning. Genom att involvera fäderna i utredningen och dokumentera det, visade socialsekreterarna att de lever upp till vad som förväntas av dem utifrån den generella socialpolitiska diskursen om fäder, nämligen att stärka fäders relation till sina barn. Å andra sidan har socialsekreterarna eget handlingsutrymme att avgöra om fäder ska kontaktas eller inte i de fall de inte är vårdnadshavare. Bilden av fäder i intervjuerna med socialsekreterarna präglades av ambivalens mellan de olika tolkningarna av barns bästa. Det handlar å ena sidan om en uppfattning om barns bästa utifrån socialpolitiska intentioner. Utifrån detta framhöll socialsekreterarna umgänge mellan barn och far som viktigt. Å andra sidan handlar det om att barn kan behöva skyddas från sina fäder, vilket är den verklighet som socialsekreterarna också möter i sitt arbete. Samtidigt visade sig också en kluvenhet mellan upprätthållandet av den traditionella respektive den moderna fadern genom att socialsekreterarna upprätthöll traditionella könsrollsmönster samtidigt som de försökte fostra moderna fäder. De hade snarlika bedömningskriterier för fäder och mödrar. Dessa baserades på föreställningar om modrande egenskaper. De ställde emellertid lägre krav på fäderna eftersom de inte förväntades uppnå dem i samma utsträckning som mödrarna. I intervjuerna med socialsekreterarna återkom de tre temana för gott faderskap, nämligen närvaro, ansvar och gränssättning. Men även ett fjärde tema blev tydligt, nämligen att barn behöver sina fäder för att ha tillgång till en manlig förebild. Socialarbetarkåren består mestadels av kvinnor. Kvinnodominansen inom den sociala barnavården sågs som ett problem samtidigt som några socialsekreterare menade att skillnader i ålder eller etniskt ursprung var lika betydelsefullt som kön i deras kontakt med fäder. Socialsekreterarna uttryckte acceptans för avvikande beteende hos fäderna. Vilka beteenden som accepterades var olika i A-by respektive B-stad beroende på vilka fäder de mötte. Socialsekreterarna i A-by hade mest frånvarande fäder att förhålla sig till. I B-stad mötte socialsekreterarna nästan bara närvarande invandrarfäder. Jag menar att socialsekreterarnas kontakt med invandrarfäder har betydelse för sättet att betrakta faderskap och att det innebär ett annat slags socialt arbete med fäder i B-stad än i A-by. B-stads möte med aktiva (i flera fall alltför aktiva) invandrarfäder och även misshandlande invandrarfäder gav en annan bild av fäder och innebar en annan verklighet att förhålla sig till än den i A-by. Pappornas bild av sitt eget faderskap präglas också av kluvenhet och ambivalens. Papporna känner sig missförstådda av sociala myndigheter. De uttryckte desperation, maktlöshet och kände sig stämplade. De måste kämpa för att få vara aktiva och närvarande fäder för sina barn och att bli sedda som det. Dessutom ifrågasätter flera av papporna sig själva som fäder. I synnerhet de pappor som missbrukar eller har missbrukat är näst intill skoningslösa i beskrivningarna av sig själva och hur de har behandlat sina barn. Flera hade erfarit att barn är oförenligt med missbruk. Det innebar antingen att de var känslomässigt frånvarande för barnen trots att de var fysiskt närvarande eller att de var fysiskt frånvarande. Pappornas bilder är färgade av stark längtan efter Svenssonliv d.v.s. kärnfamiljsliv. Jag menar att papporna i vissa avseenden kan ses som marginaliserade. Å andra sidan ger papporna en bild av sig själva som normala fäder. De beskriver gott faderskap som att vara närvarande, aktiva, manliga förebilder och att kunna sätta gränser, men de gör det i en annorlunda betydelse än socialsekreterarna. Flera av dem menar att de lever upp till det, även om det är svårt ibland. Liksom fäder i allmänhet, känner de osäkerhet i sin fadersroll och menar att relationen till sina egna fäder haft betydelse, men kanske använder papporna i större utsträckning sina egna fäder som negativt exempel. Modern hade större betydelse än väntat. De flesta var glada för att bli pappor, var med vid förlossningen och beskrev den med mycket positiva ord. De menade att de mognat med faderskapet och att livet fått en annan mening. Barnen hade en viktig plats i deras liv och de upplevde att de betyder mycket för sina barn och att de är viktiga som pappor för dem. Förutom närvaro, ansvar, gränssättning och förebilder, betonar papporna känslomässiga aspekter som viktiga för faderskapet. Bilden av det normala faderskapet betyder sannolikt mer för pappor med en fot i marginalen. Svenssonlivet framställs på ett idealiserat sätt och ett näst intill ouppnåeligt mål. Det kan uppstå svårigheter med gränssättning gentemot barnen när papporna ska ta igen tidigare brister i faderskapet. De upplever en kluvenhet mellan missbruk och barn och känner oro och skuld inför sina barn. Samtidigt ser de att deras erfarenheter som ifrågasatta fäder har fört med sig värdefulla erfarenheter som inte fäder i allmänhet har. Avhandlingen visar att bilden av fäder till socialt utsatta barn som huvudsakligen frånvarande är missvisande. Snarare finns det en variation som är svår att se utan att tala med fäderna själva. Mer kunskap om fädernas perspektiv och socialtjänstens bilder av ifrågasatt faderskap kan leda till en bättre kommunikation mellan fäder och socialtjänsten. Det kan i sin tur stärka socialt utsatta barns livssammanhang.
Illuminating patients with children up to 18 years of age – A 1-day-inventory study in a psychiatric service
Östman, M., & Eidevall, L.
(2005)
This study reports the possibility of accomplishing a survey in an ordinary psychiatric service organization to identify the children and the adolescents in families with a parent with mental illness and to highlight the number of patients in psychiatric treatment with little or virtually no contact with their minor children. The prevalence of patients being parents to minor children was 36% in the total sample consisting of 137 patients, from both inpatient and outpatient services, participating in the survey. Three of four patients were living together with the children. A higher proportion of patients in the outpatient unit were parents to minor children, and more often lived together with them. There were no differences in prevalence of patients with minor children according to sex or diagnostic subgroup. However, female patients more often and patients with a psychosis diagnosis more seldom had the custody of the children. A majority of the patients had communicated with their children about their own situation, showing that psychiatric patients care a lot about the situation of their children, although, according to the patients, the psychiatric services only take an active part in this information in a minority of the cases. The study may be found to be a basis for inspiring structured interventions and treatments programmes, including the minor children of the adult patients seeking psychiatric treatment. Prevention of mental disorders in the oncoming generation is an important issue for all psychiatric professionals, especially in co-operation between adult and child/adolescent psychiatric services.
Imagining Robert
Neugeboren, Jay
(1997)
Immersive communication intervention for speaking and non-speaking children with intellectual disabilities
Van der Schuit, M., Segers, E., van Balkom, H., Stoep, J., & Verhoeven, L.
(2010)
The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.
Immersive communication intervention for speaking and non-speaking children with intellectual disabilities
Van der Schuit, M., Segers, E., van Balkom, H., Stoep, J., & Verhoeven, L.
(2010)
The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.
Immigrant women family caregivers in Canada: implications for policies and programmes in health and social sectors
Stewart, M. J., Neufeld, A., Harrison. M. J., Spitzer, D., Hughes, K. & Makwarimba, E.
(2006)
Impact of fear of falling for Patients and Caregivers. Perceptions before and after Participation in Vestibular and Balance Rehabilitation Therapy
Honaker JA, Kretschmer LW
(2014)
The purpose of this study was to investigate the impact of fear of falling (FoF) on older patients with dizziness history and their caregivers to better determine holistic needs when developing a patient-family centered approach to falling risk reduction. A mixed-method design incorporating a phenomenological qualitative approach to explore the impact of fear of falling in fourteen patients as well as a family member or spouse of each patient. Quantitative analysis was used to further interpret results of interviews conducted before and after participation in a vestibular and balance rehabilitation program designed to reduce falling risk and improve balance confidence. Qualitative analysis of participant interviews pre and post vestibular rehabilitation revealed lifestyle changes for both participants and family caregivers due to FoF and need for reducing falling concerns. Age of the patient showed statistically significant differences in levels of balance confidence with younger subjects (≤65 years) showing more concerns about the consequences of falling even after rehabilitation than older subjects (>65 years). The study highlights the impact of FoF on participation and activity levels of patients and family caregivers as well as the need to thoroughly evaluate falling fears to achieve a holistic rehabilitation outcome.
Impact of parent caring on women
Archbold PG
(1983)
The impact of parent-caring on the lives of 30 Caucasian women was studied using data from: 1) intensive interviews, 2) participant observations, and 3) the OARS Multidimensional Functional Assessment. Analysis of the qualitative data identified two caregiving modalities: 1) care provision and 2) care management. The social and behavioral precedents and consequences of entering the careprovider or manager role were identified. The costs of caregiving were much greater for providers than managers.
Impact of working situation on mental and physical health for informal caregivers of older people with Alzheimer's disease in Italy. Results from the UP-TECH longitudinal study
Socci M, Principi A, Di Rosa M, Carney P, Chiatti C, Lattanzio F
(2019)
Abstract
Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.
Impact on professional carers of structured interviews with families
Lundh, U.
(2001)
Impact on professional carers of structured interviews with families
Lundh, U.
(2001)
This article describes a Swedish study exploring the impact of a structured assessment process on both family and professional carers. A total of 20 professional carers conducted in-depth assessments with 245 family carers and were later interviewed about their experiences. The interviews indicated that the assessment process had provided valuable new insights and had challenged many existing preconceptions. They also afforded carers the opportunity to explore difficult emotional issues, suggesting the need to develop services to help carers deal with their feelings.
Impacts of family support in early childhood intervention research
Friend, A. C., J. A. Summers, et al.
(2009)
The purpose of this paper is to review intervention research to determine the types of family support that are reported and evaluated in early childhood. This review includes 26 articles evaluating (a) parent training programs; (b) general family-centered practice models which offer comprehensive supports; (c) peer support; (d) two-generation programs; and (e) respite care. In the article, we focus our discussion on: (a) the definitions or description of family support, (b) the family variables or impacts evaluated and their findings, and (c) the link between support and impacts to both the ECO outcomes and the family quality of life domains. This review indicates a need for specific and consistent terminology in defining family support in the early intervention field. Further, a family support framework to guide future research to investigate both long-term and short-term outcomes for families is warranted. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Impacts on practitioners of using research-based carer assessment tools: Experiences from the UK, Canada and Sweden, with insights from Australia.
Guberman, N., Nicholas, E., Nolan, M., Rembicki, D., Lundh, U., & Keefe, J.
(2003)
Implementation of the International Classification of Functioning, Disability and Health (ICF) and the ICF Children and Youth Version (ICF-CY) Within the Context of Augmentative and Alternative Communication
Pless M, Granlund M.
(2012)
The purpose of this article is to discuss the implementation of the International Classification of Functioning, Disability and Health (ICF), and the ICF version for Children and Youth (ICF-CY), within the context of augmentative and alternative communication (AAC). First, the use of the ICF and the ICF-CY in AAC research is analyzed. Second, examples of training and implementation of ICF from other contexts besides AAC are provided. Finally, we synthesize data to provide directions for future implementation of the ICF and ICF-CY in the field of AAC. We conclude that, within AAC, organizational routines and intervention documents need to be adapted to the universal language and classification framework of the ICF and ICF-CY. Furthermore, examples are needed to demonstrate how factors affect implementation at organizational and individual levels.
Implementation, process, and preliminary outcome evaluation of two community programs for persons with stroke and their care partners
Huijbregts MPJ, Myers AM, Streiner D, Teasell R.
(2008)
Purpose: This evaluation compared a new self-management program with land and water exercise (Moving On after STroke or MOST) to a standard education program (Living with Stroke or LWS). Participants: Of 30 persons with stroke (average age 68 and 2 years post stroke), 18 selected MOST and 12 chose LWS. Sixteen care partners participated. Method: Assessments at baseline, program completion, and 3-month follow-up included the Reintegration to Normal Living (RNL) Index, Activity-specific Balance Confidence (ABC) scale, exercise participation, and goal attainment (for the MOST group). Program delivery costs were calculated and focus groups conducted to examine participant expectations and experiences. Results: Social support was an important benefit of both programs, but only MOST participants improved significantly on the RNL (p < .05) and ABC (p < .001). Seventy-eight percent of all short-term personal goals in MOST were achieved, and overall goal attainment was above the expected level. At follow-up, a higher percentage of MOST participants were enrolled in exercise programs (p < .05). Conclusion: Although self-management programs with exercise are more costly to deliver than standard educational programs, these preliminary results indicate that such programs may be more effective in helping persons with stroke and care partners deal with the challenges of living with stroke.
Implementing a training intervention to support caregivers after stroke: a process evaluation examining the initiation and embedding of programme change
Clarke DJ, Godfrey M, Hawkins R, Sadler E, Harding G, Forster A, et al.
(2013)
Background
Medical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings.
Results
Contextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified.
Conclusions
Where implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory's constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions.
Implementing child-focused family nursing into routine adult psychiatric practice: hindering factors evaluated by nurses
Korhonen, T.,Vehviläinen-Julkunen,K.,& Pietilä, A-M.
(2008)
Abstract
AIMS AND OBJECTIVES:
The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.
BACKGROUND:
There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.
DESIGN AND METHODS:
Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.
RESULTS:
Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.
CONCLUSION:
To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.
RELEVANCE TO CLINICAL PRACTICE:
The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.
Implementing key worker services: a case study of promoting evidence-based practice, Findings
Mukherjee, S., Sloper, P., Beresford, B., & Lund, P.
(1999)
The failure of research findings to influence practice is well established, particularly in the field of social care. Provision of information alone rarely results in change. A project recently completed by the Social Policy Research Unit, University of York, took an innovative approach to the issue of translating research into practice.
Implications of parental suicide and violent death for promotion of resilience of parentally bereaved children
Brown, A.C., Sandler, I.N., Tein, J.Y., Liu, X.C. & Haine, R.A.
(2007)
This article considers the implications of suicide and violent deaths (including suicide, homicide, and accidents) for the development of interventions for parentally bereaved children. Analyses of data from the Family Bereavement Program find minimal differences in children's mental health problems, grief or risk and protective factors based on cause of parental death. In addition, cause of death did not substantially affect the relations between risk and protective factors and bereaved children's outcomes. It is concluded that cause of death from violence or suicide is not a very useful indicator of bereaved children's need for or likelihood of benefiting from an intervention.
Improved Strain and Psychosocial Outcomes for Caregivers of Individuals with Dementia: Findings from Project ANSWERS
Judge KS, Yarry SJ, Looman WJ, Bass DM.
(2013)
This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad's care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. The Stress Process Model guided the study's hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weekspost-baseline. Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs.
Improving Life Satisfaction for the Elderly Living Independently in the Community: Care Recipients' Perspective of Volunteers
Wilson, A.
(2012)
With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.
Improving partnerships with families and carers in in-patient mental health services for older people: a staff training programme and family liaison service
Stanbridge RI, Burbach FR, Rapsey EHS, Leftwich SH, McIver CC.
(2013)
In spite of policies advocating the involvement of families in the care of mental health service users in the UK, there are few examples of initiatives to develop staff confidence and skills in partnership working. This article describes a whole team training initiative and family liaison service to promote family inclusive working on in-patient wards for older people in Somerset, UK. A three-day staff-training programme is described and training outcomes are reported. Staff report a substantial increase in confidence and family meetings held. A pre-and post- training case note audit shows increased consideration of the needs of families. To further increase face to face meetings with families a family liaison service has been established, whereby a staff member with systemic family therapy training joins ward staff to hold family meetings as part of the assessment/admission process. Evaluation of this service has shown it to be effective with positive feedback from families and staff.
In defence of care - the importance of care as a positive concept
Ronning, R.
(2002)
In for the Long Haul: Knowledge Translation Between Academic and Nonprofit Organizations.
Jansson, S. M., Benoit, C., Casey, L., Phillips, R., & Burns, D.
(2010)
Early intervention in adoptive families: supporting maternal sensitive responsiveness, infant-mother attachment, and infant competence
JUFFER, F., HOKSBERGEN, R. A., RIKSEN-WALRAVEN, J. M. & KOHNSTAMM, G. A.
(1997)
Results from adoption studies suggest that adoptive families may experience special impediments with respect to the developmental progress and outcome of their children. Based on attachment theory, two early intervention programs were designed to support families in the Netherlands with an internationally adopted child. The intervention aimed at promoting maternal sensitive responsiveness, secure infant-mother attachment relationships, and infant exploratory competence. Ninety families with an interracially adopted infant (71 from Sri Lanka and 19 from Korea) were assigned to either a control group or one of two intervention groups. All of the children, 44 boys and 46 girls, were placed for adoption under the age of 5 months (M = 8 weeks). The first intervention group (N = 30) received a personal book, which focused on sensitive parenting. The second intervention group (N = 30) was provided with the same book as well as with three video-feedback sessions at their home. The control group (N = 30) did not receive intervention. In the control group sensitive responsiveness and security of attachment were comparable to outcomes from normative samples. The least intensive program, the personal book, did not bring about change in mothers or infants. In contrast, intervention effects were established upon maternal sensitive responsiveness, infant competence, and infant-mother attachment in the group that received both the book and video feedback.
Early years of support group 1: Three therapists´ views
Bergman, A., Moskowitz, S. & Demetri Friedman, D.
(2011)
This three-part article describes the early years of one of the mother-baby-children groups of the Project for Mothers, Infants, and Young Children of September 11, 2001. The goal of the group was to help prevent the effects of trauma and loss from disrupting the relationships among the mothers, their infants, and growing children. View I by Anni Bergman describes the mothers' states of minds as the group began, when they felt that their worlds had collapsed under them. View II by Sally Moskowitz focuses on the clinical experience of working in the group, transference and countertransference themes, helping the mothers and children with their mourning process, and helping the mothers' relationships to each other, their babies, older children, family, and friends. The evolution of a casual, familial-type atmosphere and format came to be seen by the therapists as very important. The therapists wanted to provide whatever small feeling of normality and comfort possible in the context of the mothers' anguish. This routine atmosphere provided the backdrop against which the mothers could talk about what seemed like unspeakable events, thoughts, and feelings, and process the horrific events, in their magnitude and details. View III by Donna Demetri Friedman describes the play therapy treatment of two preschool-aged siblings in the context of the support group. The children's father had been killed in the World Trade Center attacks. This section describes the themes of the children's play and how they worked through the experience of the loss of their father, the birth of their sibling, and their mother's grief. It also describes their progress a decade later.
Eating well: children and adults with learning disabilities
Crawley H.
(2007)
The Caroline Walker Trust was founded in 1988 after the death of the distinguished nutritionist, writer and campaigner, Caroline Walker. Established to continue her work and in her spirit, the CWT depends wholly on donations, legacies and project grants.
The work of the CWT is particularly targeted towards vulnerable groups and people who need special help. We produce nutritional and practical guidelines for both young and old.
Ecocultural studie of families adapting to childhood developmental delays: unique features, defining, differences and applied implications
Weisner S, Gallimore R.
(1994)
Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods
van den Berg B, Brouwer W, van Exel J, Koopmanschap M, van den Bos G, Rutten F.
(2006)
This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care.
Education about family caregiving: Advocating family physician involvement.
Yaffe, MJ., Jacobs, BJ.
(2008)
Education and Poststroke Separation Among Couples with Mutual Children
Hedlund, Ebba, Kåreholt, Ingemar, Trygged, Sven
(2011)
The objective of this study based on Swedish registers is to examine the influence of socioeconomic position on poststroke divorce and separation using education as a marker. People aged 18 to 64 who suffered a first stroke between 1992 and 2005 were included if they were married or cohabiting and had mutual children. The material included 42,026 first stroke cases and 424,281 nonexposed persons, both populations divided into three different educational groups. Results show that the risk of separation is much higher in the incident year and in the first poststroke year, above all among people with only compulsory (elementary) education.
Effect of trauma on the mental health of Palestinian children and mothers in the Gaza Strip
Thabet, A. A., Abed, Y., & Vostanis, P.
(2001)
A cross-sectional study was conducted among 286 Palestinian children 9-18 years of age and their mothers in the Gaza Strip. Traumatic events recollected by children living in areas of conflict, the prevalence of post-traumatic stress reactions and the relationship between children's and mothers' mental health were investigated. The Gaza Traumatic Events Checklist, Impact of Event Scale (IES) and General Health Questionnaire (GHQ) were used to measure outcome. Children experienced on average four traumatic events; one-third reported significant post-traumatic stress reactions. IES scores were higher among girls and mothers' GHQ scores significantly predicted children's IES scores.
Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: Design of a randomized controlled trial
Blom MM, Bosmans JE, Cuijpers P, Zarit SH, Pot AM.
(2013)
Background: The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. Methods/design: A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of 'Mastery over Dementia', an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. Discussion: This study will provide evidence about the effectiveness and cost-effectiveness of an internet intervention for caregivers. If both can be shown, this might set the stage for the development of a range of internet interventions in the field of caregiving for people with dementia. This is even more important because future generations of caregivers will be more familiar with the use of internet.
Effectiveness of a Culturally Adapted Strengthening Families Program 12-16-Years for High-Risk Irish Families
Kumpfer KL, Xie J, O'Driscoll R.
(2012)
Background
Evidence-based programs (EBPs) targeting effective family skills are the most cost effective for improving adolescent behavioural health. Cochrane Reviews have found the Strengthening Families Program (SFP) to be the most effective substance abuse prevention intervention. Standardized cultural adaptation processes resulted in successful outcomes in several countries.
Objective
To promote wide-scale implementation and positive outcomes in Ireland, a unique model of inter-agency collaboration was developed plus guidelines for cultural adaptation with fidelity.
Methods
250 high-risk youth and families were recruited to complete SFP and its parent questionnaire. A quasi-experimental 2 group pre- and post-test design was employed where the norms were the comparison group. A 2 × 2 analysis of variance (ANOVA) generated the outcome tables including p values and Cohen's d effect sizes. Evaluation feedback was used to improve outcomes the next year.
Results
All 21 measured outcomes had statistically significant positive results. Larger effect sizes were found for the Irish families than the USA families (d = 0.57 vs. 0.48 for youth outcomes, d = 0.73 vs. 0.65 for parenting and d = 0.76 vs. 0.70 for family outcomes). Overt and covert aggression, criminality and depression decreased more in Irish youth, but the USA youth improved more in social skills.
Conclusions
This study suggests that SFP 12–16 is quite effective in reducing behavioural health problems in Irish adolescents, improving family relationships and reducing substance abuse. Additionally, the Irish interagency collaboration model is a viable solution to recruitment, retention and staffing in rural communities where finding five skilled professionals to implement SFP can be difficult.
Keywords
Family skills trainingParentingIrelandRisk behavioursPrevention of delinquency and substance abuseCultural adaptation
Effectiveness of a video-based therapy program at home after acute stroke: A randomized controlled trial
Redzuan NS, Engkassen JP, Mazlan M, Freddy A, Saini J.
(2012)
OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.
Effectiveness of a video-based therapy program at home after acute stroke: A randomized controlled trial
Redzuan NS, Engkassen JP, Mazlan M, Freddy A, Saini J.
(2012)
OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.
Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial
Blom MM, Zarit SH, Groot Zwaaftink RB, Cuijpers P, Pot AM
(2015)
BACKGROUND: The World Health Organization stresses the importance of accessible
and (cost)effective caregiver support, given the expected increase in the number
of people with dementia and the detrimental impact on the mental health of family
caregivers.
METHODS: This study assessed the effectiveness of the Internet intervention
'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at
baseline, were randomly assigned to two groups. Caregivers in the experimental
group (N = 149) were compared to caregivers who received a minimal intervention
consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center
for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety
and Depression Scale: HADS-A). All data were collected via the Internet, and an
intention-to-treat analysis was carried out.
RESULTS: Almost all caregivers were spouses or children (in-law). They were
predominantly female and lived with the care recipient in the same household. Age
of the caregivers varied from 26 to 87 years. Level of education varied from
primary school to university, with almost half of them holding a bachelor's
degree or higher. Regression analyses showed that caregivers in the experimental
group showed significantly lower symptoms of depression (p = .034) and anxiety (p
= .007) post intervention after adjustment for baseline differences in the
primary outcome scores and the functional status of the patients with dementia.
Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive
symptoms (.26).
CONCLUSIONS: The Internet course 'Mastery over Dementia' offers an effective
treatment for family caregivers of people with dementia reducing symptoms of
depression and anxiety. The results of this study justify further development of
Internet interventions for family caregivers of people with dementia and suggest
that such interventions are promising for keeping support for family caregivers
accessible and affordable. The findings are even more promising because future
generations of family caregivers will be more familiar with the Internet.
Effectiveness of Child Case Management Services for Offspring of Drug-Dependent Women
Jansson LM, Svikis DS, Beilenson P.
(2003)
Female drug users and their children have many medical and psychosocial problems, yet they often fail to follow through with prescribed treatments. The present study describes a specialized, case management program for children, birth through age 2, exposed to drugs in utero. Evaluation of program efficacy was examined by comparing 2-year outcomes for women who received different intensities of these child case management services. Mothers who received higher intensity care were more likely to be abstinent from illicit drugs and to have retained custody of their child(ren) at 2-year follow-up than those with lower intensity services. Study findings support clinical and economic efficacy of this model of care.
Effectiveness of combining tangible symbols with the Picture Exchange Communication System to teach requesting skills to children with multiple disabilities including visual impairment
Ali E, MacFarland SZ, Umbreit J.
(2011)
The Picture Exchange Communication System (PECS) is an augmentative and alternative communication (AAC) program used to teach functional requesting and commenting skills to people with disabilities (Bondy & Frost, 1993; Frost & Bondy, 2002). In this study, tangible symbols were added to PECS in teaching requesting to four students (ages 7-14) with multiple disabilities that included a visual impairment. First, an assessment was conducted to determine the preferred (i.e., reinforcing) and non-preferred items for each participant. Then, a multiple probe design across participants was used to evaluate the effectiveness of the adapted training. Data were collected across baseline, training and maintenance conditions, and generalization probes were conducted periodically throughout all conditions. All four participants learned requesting skills, generalized these skills to their classrooms, and maintained the skills after training. Recommendations are presented for future research regarding the use of adapted PECS with other AAC programs. © Division on Autism and Developmental Disabilities.
Effectiveness of culturally adapted Strengthening Families Programme 6-11 years among Portuguese families
Magalhães CCA, Kumpfer KL.
(2015)
Purpose
– The purpose of this paper is to compare the outcomes from the Portuguese Strengthening Families Programme (SFP) with those from other countries to see if they are equally effective despite the new context. SFP was selected for cultural adaptation because comparative effectiveness reviews find that SFP is the most effective parenting and family intervention (Foxcroft et al., 2003, 2012). Standardised cultural adaptations of SFP have resulted in successful outcomes in 35 countries.
Design/methodology/approach
– The outcomes for the SFP six to 11 years Portuguese families (n=41) were compared to the SFP six to 11 years international norms (n=1,600) using a quasi-experimental, non-equivalent control two group pre- and post-test design. A 2×2 ANOVA generated the outcome tables including p-values and Cohen's d effect sizes. Standardised test scales were used and measured 21 parenting, family and child risk and protective factors.
Findings
– Statistically significant positive results (p < 0.05) were found for 16 or 76.2 per cent of the 21 outcomes measured for Portuguese families. The Portuguese effect sizes were similar to the SFP international norms for improvements in the five parenting scales (d=0.61 vs 0.65), five family scales (d=0.68 vs 0.70) and seven children's scales (d=0.48 vs 0.48) despite these norms having larger effect sizes than the USA norms. Hence, the cultural adaptation did not diminish the outcomes and SFP Portuguese families can benefit substantially from SFP participation.
Originality/value
– A Portuguese culturally adapted version of SFP had never been developed or evaluated; hence, this paper reports original findings.
Effectiveness of school-based family and children's skills training for substance abuse prevention among 6-8-year-old rural children
Kumpfer KL, Alvarado R, Tait C, Turner C.
(2002)
This research tested the effectiveness of a multicomponent prevention program, Project SAFE (Strengthening America's Families and Environment), with 655 1st graders from 12 rural schools. This sample was randomly assigned to receive the I Can Problem Solve (ICPS) program (M. B. Shure & G. Spivack, 1979), alone or combined with the Strengthening Families (SF) program (K. L. Kumpfer, J. P. DeMarsh, & W. Child, 1989), or SF parent training only. Nine-month change scores revealed significantly larger improvements and effect sizes (0.35 to 1.26) on all outcome variables (school bonding, parenting skills, family relationships, social competency, and behavioral self-regulation) for the combined ICPS and SF program compared with ICPS-only or no-treatment controls. Adding parenting-only improved social competency and self-regulations more but negatively impacted family relationships, whereas adding SF improved family relationships, parenting, and school bonding more.
Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand
Oupra R, Griffiths R, Pryor J, Mott S.
(2010)
In Thailand, the crude death rate from stroke is 10.9/100,000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.
Effectiveness of the Incredible Years parent training to modify disruptive and prosocial child behavior: A meta-analytic review
Menting, A. T. A., de Castro, B. O., & Matthys, W.
(2013)
The present meta-analytic review examined effectiveness of the Incredible Years parent training (IYPT) regarding disruptive and prosocial child behavior, and aimed to explain variability in intervention outcomes. Fifty studies, in which an intervention group receiving the IYPT was compared to a comparison group immediately after intervention, were included in the analyses. Results showed that the IYPT is an effective intervention. Positive effects for distinct outcomes and distinct informants were found, including a mean effect size of d=.27 concerning disruptive child behavior across informants. For parental report, treatment studies were associated with larger effects (d=.50) than indicated (d=.20) and selective (d=.13) prevention studies. Furthermore, initial severity of child behavior revealed to be the strongest predictor of intervention effects, with larger effects for studies including more severe cases. Findings indicate that the IYPT is successful in improving child behavior in a diverse range of families, and that the parent program may be considered well-established.
Effectiveness of the Strengthening Families Programme 10–14 in Poland for the prevention of alcohol and drug misuse: protocol for a randomized controlled trial
Okulicz-Kozaryn K, Foxcroft David R.
(2012)
Background
Alcohol and other drug use and misuse is a significant problem amongst Polish youth. The SFP10-14 is a family-based prevention intervention that has positive results in US trials, but questions remain about the generalizability of these results to other countries and settings.
Methods/Design
A cluster randomized controlled trial in community settings across Poland. Communities will be randomized to a SFP10-14 trial arm or to a control arm. Recruitment and consent of families, and delivery of the SFP10-14, will be undertaken by community workers. The primary outcomes are alcohol and other drug use and misuse. Secondary (or intermediate) outcomes include parenting practices, parent–child relations, and child problem behaviour. Interview-based questionnaires will be administered at baseline, 12 and 24 months.
Discussion
The trial will provide information about the effectiveness of the SFP10-14 in Poland.
Trial registration
International Standard Randomised Controlled Trial Number: ISRCTN89673828
Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial
Ali L, Krevers B, Sjöström N, Skärsäter I
(2014)
OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.
Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial
Ali L, Krevers B, Sjöström N, Skärsäter I
(2014)
OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.
Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites
Kumpfer KL, Whiteside HO, Greene JA, Allen KC.
(2010)
Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience ( d = .76 for both), Family Organization ( d = .75), Parental Supervision ( d = .73), Parenting Efficacy ( d = .70), and Positive Parenting ( d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version ( d = .43). (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites.
Kumpfer KL, Whiteside HO, Greene JA, Allen KC.
(2010)
Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience (d = .76 for both), Family Organization (d = .75), Parental Supervision (d = .73), Parenting Efficacy (d = .70), and Positive Parenting (d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version (d = .43). (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome
Wright, C. A., Kaiser, A. P., Reikowsky, & D. I., Roberts, M. Y.
(2013)
PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).
MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.
ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.
ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.
Effects of a sexual rehabilitation intervention program on stroke patients and their spouses
Song H, Oh H, Kim H, Seo W.
(2011)
The present study was conducted to examine whether a sexual rehabilitation intervention program, which was developed during the present study and designed for stroke patients and their spouses, was effective in terms of sexual knowledge and satisfaction and frequency of sexual activity at 1 month after intervention. The study subjects were conveniently selected from stroke patients admitted to the neurology department at a university hospital located in Incheon, South Korea. A total of 46 subjects (12 couples for the experimental group and 11 couples for the control group) were included. Sexual knowledge, sexual satisfaction, frequency of sexual activity, level of cognitive function, and performance with respect to daily living activities were measured. The results obtained demonstrated that the devised sexual rehabilitation intervention program significantly increased sexual satisfaction and frequency of sexual activity, but that it did not promote sexual knowledge. The present study has meaning because the intervention program could be used as a practical guideline for post-stroke sexual rehabilitation. In addition, the findings of this study provide evidence regarding the usefulness of sexual education and counseling on the sexual health of post-stroke patients and their spouses.
Effects of a web-based stroke education program on recurrence prevention behaviors among stroke patients: a pilot study.
Kim JI, Lee S, Kim JH.
(2013)
The effectiveness of methods to prevent stroke recurrence and of education focusing on learners' needs has not been fully explored. The aims of this study were to assess the effects of such interventions among stroke patients and their primary caregivers and to evaluate the feasibility of a web-based stroke education program. The participants were 36 patients with a clinical diagnosis of ischemic stroke within 12 months post-stroke and their primary caregivers. The participants were randomly assigned to either an experimental or a control group. The primary measures included blood chemistry, self-reported health behaviors, sense of control, and health motivation for stroke patients, and caregiver mastery for caregivers. To test the feasibility of the intervention program, the rates of participation and occurrence of technical problems were calculated. The experimental group tended to improve significantly more than the control group in terms of exercise, diet, sense of control and health motivation for the stroke patients and in terms of caregiver mastery for the primary caregivers. The rate of participation in the web-based program was 63.1%. This program, which focuses on recurrence prevention in stroke patients and caregivers, has the potential to improve health behaviors for stroke patients.
Effects of an automated telephone support system on caregiver burden and anxiety: Findings from the reach for tlc intervention study
Mahoney, D. F., Tarlow, B. J. & Jones, R. N.
(2003)
Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics
Gallant MD, Lafreniere KD.
(2003)
This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.
Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics.
Gallant MD, Lafreniere KD.
(2003)
This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.
Effects of coping skills training, group support, and information for spouses of alcoholics: A controlled randomized study
Zetterlind, U., Hansson, H., Åberg-Örbeck, K., & Berglund, M.
(2001)
Our aim was to compare the effect of three different interventions in spouses of alcoholics with regard to coping strategies, mental symptoms, hardship, and drinking patterns. The spouses were randomized to three different interventions: 1) information, 2) individual coping skills training, and 3) group support. Follow-up periods were at 12 and 24 months. In this paper the 12-month results are presented. Thirty-nine spouses attended the study. They were recruited from the services of the Department of Alcohol and Drug Diseases, Malmö University Hospital, Malmö, Sweden, and advertisements in the local daily press. The spouses were randomized to 1) 1 standard information session, 2) 4 individual coping skills training sessions, once a month, and 3) 12 group sessions, twice a month. Background data were obtained, and four self-report scales-the Coping Behaviour Scale, Hardship Scale, SCL-90, and AUDIT-were administered at admission and follow-up examinations. At follow-up all three groups had improved significantly with regard to coping behaviour, hardship, and mental symptoms. The coping skills training group and the support group together showed a stronger decrease in psychiatric symptoms (P = 0.1) than the single information session group. The three groups did not differ in coping behaviour and hardship. The findings indicate that changing of coping strategies in spouses of alcoholics can be successful with only one single information session, whereas the reduction of mental symptoms may need longer treatment.
Effects of early life stress on cognitive and affective function: an integrated review of human literature
Pechtel, P., & Pizzagalli, D. A.
(2011)
Abstract
RATIONALE:
The investigation of putative effects of early life stress (ELS) in humans on later behavior and neurobiology is a fast developing field. While epidemiological and neurobiological studies paint a somber picture of negative outcomes, relatively little attention has been devoted to integrating the breadth of findings concerning possible cognitive and emotional deficits associated with ELS. Emerging findings from longitudinal studies examining developmental trajectories of the brain in healthy samples may provide a new framework to understand mechanisms underlying ELS sequelae.
OBJECTIVE:
The goal of this review was twofold. The first was to summarize findings from longitudinal data on normative brain development. The second was to utilize this framework of normative brain development to interpret changes in developmental trajectories associated with deficits in cognitive and affective function following ELS.
RESULTS:
Five principles of normative brain development were identified and used to discuss behavioral and neural sequelae of ELS. Early adversity was found to be associated with deficits in a range of cognitive (cognitive performance, memory, and executive functioning) and affective (reward processing, processing of social and affective stimuli, and emotion regulation) functions.
CONCLUSION:
Three general conclusions emerge: (1) higher-order, complex cognitive and affective functions associated with brain regions undergoing protracted postnatal development are particularly vulnerable to the deleterious effects of ELS; (2) the amygdala is particularly sensitive to early ELS; and (3) several deficits, particularly those in the affective domain, appear to persist years after ELS has ceased and may increase risk for later psychopathology.
Effects of family psychoeducation on expressed emotion and burden of care in first-episode psychosis: A prospective observational study
González-Blanch, C., V. Martín-Muñoz, et al.
(2010)
The present study aimed to examine the levels and interactions of family burden (FB) and expressed emotion (EE) in first episode psychosis (FEP) patients and, secondly, to observe the potential change after a brief psychoeducational group intervention implemented in a real world clinical setting. Twenty-three key relatives of FEP patients received a brief psychoeducational group intervention. FB and EE were assessed before and after the intervention. EE-change and correlations between variables were examined. Half of the sample of key-relatives showed high levels of EE. No severe family burden was observed. FB and EE did not change after the intervention. Family subjective and objective burden were correlated with emotional overinvolvement, but not with criticism. Brief psychoeducational groups may not be sufficient to reduce FB and EE associated to the experience of caregiving for a family member with a first-episode psychotic disorder. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Effects of Four Therapy Procedures on Communication in People with Profound Intellectual Disabilities
Lindsay WR, Black E, Broxholme S, Pitcaithly D, Hornsby N, Lindsay B.
(2001)
A number of alternative therapies have recently been employed with people who have intellectual disabilities (IDs). The present study examines the effects of four frequently used therapies on the communication of people with profound ID. Communication was assessed using five measures of positive communication and five measures of negative communication. The therapies assessed were Snoezelen, active therapy, relaxation and aromatherapy/hand massage. There were eight participants in the present study and each received all four of the therapeutic procedures in a counterbalanced design. Treatment procedures were videotaped at sessions 5, 10, 15 and 20, and later scored for defined measures of communication. Both Snoezelen and relaxation increased the level of positive communication and had some effect on decreasing negative communication. However, active therapy and aromatherapy/hand massage had little or no effect on communication. The lack of a no-treatment control is noted, especially in the light of trends seen at baseline. Considering the lack of generalization of therapeutic effects, the present results should be treated with caution.
Effects of guided care on family caregivers
Wolff, J. L., Giovannetti, E. R., Boyd, C. M., Reider, L., Palmer, S., Scharfstein, D., et al.
(2010)
Effects of maternal mental retardation and poverty on intellectual, academic, and behavioural status of school-age children
Feldman, MA., & Walton-Allen, N.
(1997)
The impact of low maternal IQ and poverty was examined through comparison of 27 school-age children of mothers with mild mental retardation to 25 similarly impoverished children of mothers without mental retardation. The children whose mothers had mental retardation had lower IQs and academic achievement and more behavior problems. Not one child with a mother who had mental retardation was problem-free. Boys were affected more severely than were girls. Quality of the home environment and maternal social supports were lower in the group with maternal mental retardation; both measures were negatively correlated with child behavior disorders. Results suggest that being raised by a mother with mental retardation can have detrimental effects on child development that cannot be attributed to poverty alone.
Effects of maternal stimulant medication on observed parenting in mother-child dyads with attentiondeficit/ hyperactivity disorder
Chronis-Tuscano, A., Rooney, M., Seymour, K. E., Lavin, H. J., Pian, J., Robb, A., … Stein, M. A.
(2010)
This pilot study of 23 mothers with attention-deficit/hyperactivity disorder (ADHD) and their offspring with ADHD examined the effects of maternal stimulant medication on observed interactions. Parent-child interactions were observed using a structured protocol before and after mothers underwent a 5-week, double-blind stimulant titration. Despite dramatic effects of medication on adult ADHD symptoms, this small pilot and open label laboratory-based study did not identify maternal stimulant effects on observed parenting or child behavior. Given the documented impairments in parenting displayed by adults with ADHD, behavioral parenting interventions may be needed in conjunction with medication for mothers with ADHD to optimize family outcomes.
Effects of Mental illness on family quality of life
Walton-Moss, B., Gerson, L., Rose, L.
(2005)
Worldwide, at least 25% of persons and their families are affected by mental illness resulting in significant stress and burden; yet little is known about how the illness affects quality of family life. In this paper, we report a secondary analysis of a grounded theory study that identified the process by which 17 families managed mental illness over time. Families were characterized as Hanging On, Being Stable, or Doing Well based on their responses to caring for relatives with mental illness. Most of the families perceived themselves as Being Stable or Doing Well and four families perceived themselves as Hanging On. In this paper, these descriptors of family quality of life, interpreted within the context of family development and illness trajectories, are presented as a focus of professional support and intervention.
Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial
Lam WK, Fals-Stewart W, Kelley ML.
(2008)
This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, posttreatment, 6- and 12-month follow up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.
Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial.
Lam WK, Fals-Stewart W, Kelley ML.
(2008)
This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, post-treatment, 6-and 12-month follow-up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.
Keywords: children of alcoholics, parent training, behavioral couples therapy, alcoholism treatment, child functioning
Effects of the "Preparing for the Drug Free Years" curriculum on growth in alcohol use and risk for alcohol use in early adolescence
Jisuk P, Rick K, Hawkins JD, Kevin PH, Terry ED, Susan CD, et al.
(2000)
Preparing for the Drug-Free Years (PDFY) is a curriculum designed to help parents learn skills to consistently communicate clear norms against adolescent substance use, effectively and proactively manage their families, reduce family conflict, and help their children learn skills to resist antisocial peer influences. This study examined the effects of PDFY on the trajectories of these factors, as well as on the trajectory of alcohol use from early to mid adolescence. The sample consisted of 424 rural families of sixth graders from schools randomly assigned to an intervention or a control condition. Data were collected from both parents and students at pretest, posttest, and 1-, 2- and 3 1/2-year follow-ups. Latent growth models were examined. PDFY significantly reduced the growth of alcohol use and improved parent norms regarding adolescent alcohol use over time. Implications for prevention and evaluation are discussed.
Effects of war and organized violence on children: a study of Bosnian refugees in Sweden
Angel, B., Hjern, A., & Ingleby, D.
(2001)
Data from 99 school-aged Bosnian refugee children living in Sweden were analyzed to reveal the patterns of war stress experienced and the relation between these stressors and current psychological problems. A significant pattern of associations emerged. When children had experienced much stress, talking about their experiences seemed to exacerbate their negative effects.
Family as failure? : The role of informal help-givers to disabled people in Sweden
Jeppsson Grassman, E., Whitaker, A., & Taghizadeh Larsson, A.
(2009)
Family as failure? The role of informal help-givers to disabled people in Sweden.
Jeppsson Grassman, E., Whitaker, A. & Taghizadeh Larsson, A.
(2008)
Family Bereavement Program (FBP) approach to promoting resilience following the death of a parent
Sandler, I.N., Wolchik, S.A., Ayers, T.S., Tein, J. & Luecken, L.
(2013)
This paper describes a research-based program designed to promote resilience of parentally-bereaved children and their bereaved surviving parent. A contextual resilience model is described as the conceptual foundation of the program. The program is designed to enhance specific parenting and coping skills and to help caregivers and children accomplish goals they set for themselves at the outset of the program. The content of the twelve-sessions and the approach to teaching and supporting parents work on their program and personal goals are described. Evaluation of the program using a randomized experimental design indicates that the program is effective in promoting resilient outcomes of children and of the bereaved parent six-years following their participation in the program.
Family bereavement project documentation
Arizona State University Prevention Research Center
(2006)
Family burden and participation care: a study of relatives to patients admitted to voluntary and compulsory psychiatric care Department of Clinical Neuroscience
Östman, M.
(2000)
Family burden and participation in care - a study of relatives to patients admitted to voluntary and compulsory psychiatric care.
Östman, M.
(2000)
Family burden and participation in care : A study of relatives to patients admitted to voluntary and compulsory psychiatric care
Östman, M.
(2000)
Family burden and participation in care : A study of relatives to patients admitted to voluntary and compulsory psychiatric care
Östman, M.
(2000)
Family burden and participation in care: A study of relatives to patients admitted to voluntary and compulsory psychiatric care.
Östman, Margareta
(2000)
Family burden and participation in care: Differences between relatives of patients admitted to psychiatric care for the first time and relatives of re-admitted patients
Östman, M.
(2004)
Family burden and participation in care: Differences between relatives of patients admitted to psychiatric care for the first time and relatives of re-admitted patients
Östman, M.
(2004)
Family burden and relatives` participation in psychiatric care: Are the patient`s diagnosis and the relation to the patient of importance?
Östman, M., Wallsten, T., & Kjellin, K.
(2005)
BACKGROUND:
Studies that differentiate among diagnoses have detected divergent results in the experience of family burden.
AIM:
This study aimed to investigate differences in family burden and participation in care between relatives from subgroups of psychoses, affective disorders and 'other diagnoses', and between different subgroups of relatives.
METHOD:
In a Swedish longitudinal study performed in 1986, 1991 and 1997, 455 close relatives of both committed and voluntarily admitted patients were interviewed concerning different aspects of their burden, need for support and participation in the actual care situation.
RESULTS:
Relatives showed burdens in several of the aspects measured. In only one aspect of the investigated burden items was a difference found between different diagnostic subgroups. The relatives of patients with affective disorder more often had to give up leisure time. However, spouses showed more burdens and more often experienced sufficient participation in the patient's treatment than other subgroups while siblings more seldom experienced burdens and more seldom felt that their own needs for support had been met by the psychiatric services. Within each diagnostic subgroup there were differences between subgroups of relatives.
CONCLUSION:
Being a close relative, and living together with a severely mentally ill person in an acute situation, is one factor of importance for experiencing burden and participation in care, contradicting the conventional wisdom which differentiates between diagnoses.
Family burden, participation in care and mental health – an 11 year comparison of the situation of relatives to compulsorily and voluntarily admitted patients
Östman, Margareta, Hansson, Lars & Andersson, K.
(2000)
The changes in family burden and participation in care of relatives to both voluntarily and compulsorily admitted patients were investigated as part of a longitudinal study of the quality of the mental health services in a Swedish county performed between 1986 and 1997. The relationship between the relative's mental health and family burden, participation in care and need of own support was also investigated. The results showed similar and high levels of burden and a non-sufficient participation in care in both periods investigated despite the ongoing changes in the delivery of psychiatric services and a change in the compulsory legislation in Sweden during the period. More relatives experienced an own need of care and support from the psychiatric services in the 1997 investigation. Relatives who experienced mental health problems of their own more often experienced other forms of burden, experienced less participation in the patient's treatment and also more often had own needs of care and support. It is concluded that interventions in families where relatives experience mental health problems will be useful, since a well-functioning network around the mentally ill person has shown to reduce relapse.
Family caegiver´s future planning for younger and older adults with serious mental illness (SMI).
Corsentino, E. A., Molinari, V., Gum, A. M., Roscoe, L. A., & Mills, W. L.
(2008)
This study examines plans for future caregiving made by family members of younger (n =59) and older adults (n =16) with serious mental illness (SMI). An online survey was advertised through a newsletter of the National Alliance on Mental Illness. Qualitative analyses yielded four areas of caregiver concern: health of the care recipient over time, ability of caregivers to sustain support, social support available for the care recipient, and financial burden of care. Despite these concerns, few caregivers reported completed plans for future caregiving. One fourth of the caregivers had made no plans, nor had they discussed future caregiving with others. Although most would prefer other relatives to assume care in the event they could not sustain support, these expectations may not be communicated openly. Generating discussion on this pertinent topic has implications for the aging society regarding how best to care for those with SMI and their caregivers.
Family care for the elderly and the importance of filial piety
Liu, B.-S., & Huang, H.-C.
(2009)
Family caregiver respite and leisure: A feminist perspective
Strang, V. R.
(2001)
Family caregivers' assessments of caring for a relative with dementia: a comparison of urban and rural areas
Ehrlich K, Boström AM, Mazaheri M, Heikkilä K, Emami A.
(2015)
AIM: This study aimed to describe and compare urban and rural family caregivers'
reactions to caring for a relative with dementia and to examine the associations
between caregiving and socio-demographic factors.
BACKGROUND: Most studies on family caregivers' experiences caring for older
people with dementia have been conducted in urban areas, and little is known
about the experiences of family caregivers living in rural areas.
DESIGN: A cross-sectional study design was used.
METHODS: A total of 102 caregivers (response rate 85%) from urban (n=57) and
rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and
demographic information. Data were analysed using descriptive and inferential
statistics and linear regression models.
RESULTS: Overall, family caregivers reported high satisfaction even if they also
reported high impact on finances and daily living. Rural caregivers experienced a
higher negative impact on finances but reported more support from family members
than urban caregivers. Age, gender and relationship were significantly associated
with four of the five CRA subscales. Educational level and geographical setting
were not associated with any of the CRA subscales.
CONCLUSIONS: The results of the study raise questions about the financial
situation of older female caregivers and on the expectations of built-in family
structures in urban and rural areas. Further studies focusing on the meaning and
constitution of a family would help us to understand how these factors influence
family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE: To provide person-centred care and to avoid
stereotyped caregiving, a better picture of traditions in family caregiving can
improve a more differentiated and appropriate professional caregiving pliable
with the cultural context in which it is carried out.
Family caregivers' experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study
Graneheim UH, Johansson A, Lindgren BM.
(2014)
Many people with dementia are cared for in their homes by family caregivers. As
the dementia progresses, admission of the family member to a nursing home becomes
inevitable. The aim of this meta-ethnographic study was to describe caregivers'
experiences of relinquishing the care of a family member with dementia to a
nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo,
between the years 1992 and 2012, was performed, and 10 qualitative articles,
based on 180 family caregivers' experiences, were included. The family
caregivers' described their experiences as a process that went from being
responsible for the decision, through living with the decision, adjusting to a
new caring role and having changed relationships. They felt unprepared and lonely
with these changes. They experienced loss, guilt and shame, but also feelings of
relief. Their roles in the nursing home environment were to make sure that the
individual needs of the person with dementia were respected and to monitor the
quality of care. They wished to maintain their relationship with the person with
dementia and to establish meaningful relationships with caring staff. The process
of relinquishing care is similar to a crisis process, which starts with a turning
point, followed by a coping face and finally the outcome of the process. The
adaption to the new situation can be facilitated if the family caregivers are
recognised as partners in the care of the person with dementia. The family
caregivers' unique knowledge of their relatives' previous life story should be
acknowledged in both care planning and daily care. Welcoming family caregivers to
regular meetings with staff can contribute to increase the feeling of
partnership. Offering staff clinical supervision could be one way of preparing
them to deal with the emotional strain reported by family caregivers.
Family caregivers experiences of strain in caring for a demented elderly person.
Almberg, B.
(1997)
Family Caregivers' Heavy and Overloaded Burden in Advanced Chronic Obstructive Pulmonary Disease
Strang S., Osmanovic M., Hallberg C., Strang P.
(2018)
Abstract
BACKGROUND:
Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. OBJECTIVE: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness.
DESIGN: This is a qualitative interview study using both focus group interviews and individual interviews. SETTING/SUBJECTS: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed.´MEASUREMENTS: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. RESULTS: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. CONCLUSIONS:
Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member
Family Caregivers of Older Adults: A Life Span Perspective
Roberto, K. A. & Jarrott, S. E.
(2008)
Family caregivers of older relatives: Ways of coping and change in distress
Knussen, C., Tolson, D., Brogan, C. A., Swan, I. R. C., Stott, D. J. & Sullivan, F.
(2008)
Family caregivers of persons with dementia : experiences of burden, satisfaction and psychosocial intervention
Andrén, S.
(2006)
One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.
Family caregivers of persons with dementia : Experiences of burden, satisfaction and psychosocial intervention
Andrén, S.
(2006)
One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.
Family caregivers' subjective experiences of satisfaction in dementia care: Aspects of burden, subjective health and sense of coherence
Andren, S., & Elmståhl, S.
(2005)
Family caregivers´ assessment of symptoms in persons with dementia using the GBS-scale: differences in rating after psychosocial intervention – an 18-month follow-up study
Dahlrup, B., Nordell, E., Andrén, S., & Elmståhl, S.
(2011)
The purpose of this study was to examine if psychosocial intervention for family caregivers made any differences in describing symptoms of dementia in the persons they cared for. The study population comprised family caregivers of persons aged 70 years and older receiving social services and diagnosed with dementia disorders. A group of 129 family caregivers underwent psychosocial intervention including education, information, and provision of a support group, while 133 family caregivers did not and these formed the control group. Family caregivers were followed-up every 6 months for a total of 18 months. They rated intellectual, emotional, and activity of daily living (ADL) functions in persons with dementia using the Gottfries-Bråne-Steen scale (GBS-scale). Family caregivers who underwent psychosocial intervention rated the intellectual and emotional symptoms of dementia significantly higher 6 months later compared to controls and the effect was sustained during the 18-month follow-up irrespective of relationship and education. Most notably, decrease in function of recent memory, ability to increase tempo, long-windedness, distractibility, and blunting were better identified. Our findings suggest that the family caregivers who underwent psychosocial intervention achieved better understanding of different symptoms and the behaviors of dementia. These findings may explain earlier findings of positive effects after psychosocial intervention on family caregivers' sense of burden, satisfaction, and ability to delay nursing home placement.
Family caregivers´ assessments of caring for a relative with dementia: a comparison of urban and rural areas
Ehrlich, K., A-M., B., Mazaheri, M., Heikkilä, K., & Emami, A.
(2015)
AIM:
This study aimed to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors.
BACKGROUND:
Most studies on family caregivers' experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas.
DESIGN:
A cross-sectional study design was used.
METHODS:
A total of 102 caregivers (response rate 85%) from urban (n=57) and rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models.
RESULTS:
Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales.
CONCLUSIONS:
The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE:
To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out.
Family Caregivers’ Health in connection with providing care
Erlingsson, C., Magnusson, L. & Hanson, E
(2012)
Family caregivers--women between job responsibilities and home nursing
Hammer, R.
(2004)
Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress
Goossens, P.J.J., Van Wijngaarden, B., Knoppert-Van der Klein, E.A.M. Van Achterberg, T
(2008)
AIMS:
This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles.
METHODS:
Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers' consequences, the Utrecht Coping List (UCL) to measure caregivers' coping styles, and the 12-item General Health Questionnaire (GHQ-12) to measure caregiver distress. Scale (sub)scores were calculated and relationships between the results were explored.
RESULTS:
Caregiver consequences were found to be limited, although approximately 30% reported distress. Male caregivers used a more avoiding coping style and undertook activities to provide diversion. Female caregivers used a less active approach and sought less social support. Correlations were found between the IEQ overall score and its subscales 'tension' and 'worrying' and the UCL subscales 'palliative reaction pattern' and 'passive reaction pattern'. Distress appears to occur more often in caregivers who report more consequences, tend to use a more avoiding coping style, and have a more passive reaction pattern.
CONCLUSIONS:
Clinicians should assess symptoms of caregiver distress. When caregiver distress is noticed, efforts should be undertaken to support the caregiver and teach them skills to cope effectively with the consequences they experience in order to stay well.
Family caregiving in dementia: An analysis of the caregiver's burden and the "Breaking-point" When home care becomes inadequate
Annerstedt, L., Elmståhl, S., Ingvad, B., & Samuelsson, S.
(2000)
Family caregiving to the frail elderly
Horowitz, W.
(1985)
Family Caregiving when Relationships are Poor. In Family Caregiving to Older Disabled People. Relational and Institutional Issues. (eds: Paoletti I.).
Baillie, L.
(2007)
Family caregiving: The positive impact on adolescent relationships’
Beach, D.
(1997)
Adult children are a significant contingent of elder care providers; a number of these individuals simultaneously care for children of their own while coping with caregiving commitments. Unfortunately, there is a paucity of information regarding the caregiving impact on these children and young adults. Moreover, the possible positive consequences of caring for an impaired elder are rarely mentioned. The current study was undertaken to examine the potential positive caregiving experiences of adolescents and their perceptions of relational enhancement as a result of caregiving. Twenty adolescents aged 14-18 were interviewed and asked a series of semistructured questions concerning satisfaction related to caregiving. To be included, respondents had to be a child, grandchild, or niece/nephew of an Alzheimer's (or Alzheimer's Type Dementia) patient cared for by the adolescent's immediate family. Employing features of content analysis methodology, all interviews were audiotaped and transcribed verbatim. The results merged into four primary categories: 1) increased sibling activity/sharing; 2) greater empathy for older adults; 3) significant mother-adolescent bonding and 4) peer relationship selection and maintenance. The implications for future research and practice are discussed.
Family carers combining paid work and family care. Research overview 2010:1. (In Swedish)
Sand, A.-B.
(2010)
Family Carers' experiences using Support Services in Europe: Empirical Evidence from the EUROFARMCARE study
Lamura, G., Mnich, E., Wojszel, B., Nolan, M., Krevers, B., Mestheneos, L., et al.
(2008)
Family Carers of stroke survivors: needs, knowledge, satisfaction and competence in caring
Mackenzie, Ann, Perry, Lin, Lockhart, Elizabeth, Cottee, Mark, Cloud, Geoffrey & Mann, Helen
(2007)
PURPOSE:
To examine the support required by family carers for stroke survivors.
METHODS:
Forty-two family carers were recruited for surveys of needs, knowledge, satisfaction, and competence in caring before and 4 - 6 weeks after discharge from an Acute Stroke Unit (ASU).
RESULTS:
Information deficits about dealing with psychological, emotional, and behavioural problems and local service information were priorities before and after discharge. Younger female carers (under 56 years) were least satisfied with communication with ASU staff. Face to face contact was valued. After discharge younger female carers, particularly of non-White ethnic groups, reported lower levels of competence in caring and higher burden. Knowledge of stroke risk factors was low in all groups. High satisfaction with treatment and therapy in the ASU, was not transferred to the community. Carers reported feeling alone and described uncoordinated services.
CONCLUSIONS:
Carers are able to anticipate and prioritise their needs, value communication with staff and involvement with discharge-planning, but particular difficulties were experienced by younger female carers and those from non-White ethnic groups. This requires particular attention when developing targeted interventions for family carers from a mixed ethnic community. In-depth and longitudinal studies are needed to detail psychosocial needs and guide practice particularly amongst non-White family carers.
Family characteristics as mediator of the influence of problem drinking and multiple risk status on child mental health
Roosa, M., Dumka, L., & Tein, JY.
(1996)
Structural equation modeling was used to test a theoretical model in which family cohesion and family reframing coping were hypothesized as mediators between family drinking problems, multiple risk factors, negative life events, and child mental health (conduct disorder, depression, anxiety) in two-parent families. Family cohesion mediated the relationships of family drinking problems and negative life events to child conduct disorder and depression. Negative life events mediated the relationships of family drinking problems and family multiple risk to child conduct disorder. Family reframing coping did not function as a mediator nor was it related to child mental health when other factors were considered simultaneously. Results indicate that increasing family cohesion and reducing sources of stress within the family (negative life events) represent promising areas of interventions for children with problem-drinking parents.
Family Connections: A Program for Relatives of Persons with Borderline Personality Disorder
Hoffman, P. D., Fruzzetti, A. E., Buteau, E., Neiditch, E. R., Penney, D., Bruce, M. L., et al.
(2005)
This study assessed changes in family members who participated in Family Connections, a 12-week manualized education program for relatives of persons with borderline personality disorder (BPD). Family Connections, led by trained family members, is based on the strategies of standard Dialectical Behavior Therapy (DBT) & DBT for families. The program provides (a) current information & research on BPD, (b) coping skills, (c) family skills, & (d) opportunities to build a support network for family members. Forty-four participants representing 34 families completed the pre-, post-, & 6-month postbaseline self-report questionnaires. Analyses employing hierarchical linear modeling strategies showed significant reductions in grief & burden, & a significant increase in mastery from pre- to post-group assessment. Changes were maintained at 6 months post baseline. 1 Table, 19 References. Adapted from the source document.
Family Connections: An Education and Skills Training Program for Family Member Well Being: A Leader's Perspective
Penney, D.
(2008)
This chapter describes the Family Connections (FC) program, a 12-week, two-hour, interactive, manualized, education/skills training course for relatives of persons with borderline personality disorder (BPD) that is co-led by trained family members. It explicates the training of co-leaders, the registration process for participants, a detailed description of the curriculum's six modules, and consideration of the on-going challenges faced by participants after the program ends. The introduction describes historical development of the program. Subsequent sections are organized into two parts: each opens with a segment that presents key ideas, which is followed by 'Leader Observations' the reflections of a seasoned leader. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580
Family context and young children’s responses to earthquake
Proctor, L. J., Fauchier, A., Oliver, P. H., Ramos, M. C., Rios, M. A., & Margolin, G.
(2007)
BACKGROUND:
Family context can affect children's vulnerability to various stresses, but little is known regarding the role of family variables on children's reactions to natural disaster. This prospective study examined the influence of predisaster observed parenting behaviors and postdisaster parental stress on young children's distress following an earthquake.
METHODS:
Participants were 117 two-parent families with a child age 4-5 at the initial assessment. The families experienced different degrees of impact from the earthquake. Pre-earthquake family context comprised observations of parents' positive and negative behaviors during a parent-child play task. Eight months after the earthquake, mothers reported symptoms of parental stress and children's distress.
RESULTS:
Earthquake impact and children's distress symptoms were moderately correlated (r = .44), but certain pre-earthquake parental behaviors moderated the relationship. The dose-response association between earthquake impact and children's symptoms did not hold for families in which fathers showed high levels of negative behaviors with daughters, or mothers showed low levels of positive behaviors with sons. In addition, results consistent with full mediation for boys (and partial mediation for girls) indicated that 86% of the total effect of earthquake impact on boys' distress (and 29% on girls' distress) occurred through the mediator of reported parental stress.
CONCLUSIONS:
These findings demonstrate that young children's responses to an abrupt, negative environmental event, such as an earthquake, are influenced in part by the nature of the parent-child relationship prior to the event as well as by the responses parents exhibit following the event.
Family education seminars and social functioning of adults with chronic aphasia
Hinckley JJ, Packard MEW.
(2001)
Aphasia affects functional activities and participation in social roles years after onset. Some group and individual programs have reported success in improving social activities and perceived wellness. These programs typically last several weeks or months. A short, 2-day seminar style program designed for adults with chronic aphasia and their families is described in this report. Six-month follow-up data from participant pairs demonstrates a significant improvement in functional activity level, improved knowledge of aphasia, and improved family relationships. Nonparticipant pairs did not demonstrate any changes over the same period. These findings replicate and extend those of a previous study on the same 2-day seminar [Top. Stroke Rehabil. 2 (1995) 53.]. The results of this study demonstrate the important outcomes of even a very brief program designed to address the long-term psychosocial needs of adults living with aphasia and their families. Educational objectives: As a result of this activity, the participant will be able to: (1) describe a brief family education seminar for adults with chronic aphasia; (2) discuss outcomes in family adjustment, community reintegration, and activities of daily living associated with participation in a family education seminar; and (3) evaluate areas of programming and outcomes that should be addressed in future research.
Family environmental and genetic influences on children’s future chemical dependency
Kumpfer KL, De Marsh JP.
(1985)
This article reviews possible genetic and environmental factors which contribute to future chemical dependency in children of aicohol and drug abusing parents. Studies on genetic vulnerability and biological markers of alcoholism and drug abuse are reviewed. Recent studies by the authors on characteristics of families with chemically dependent parents and the affective, cognitive, and behavioral impacts on the children are discussed. The conclusion includes recommendations concerning the need for more family-focused prevention interventions for children of chemically dependent parents.
Family Health Conversations: How Do They Support Health?, Nursing Research and practice
Persson, C., & Benzein, E.
(2014)
Research shows that living with illness can be a distressing experience for the family and may result in suffering and reduced health. To meet families' needs, family systems intervention models are developed and employed in clinical contexts. For successful refinement and implementation it is important to understand how these models work. The aim of this study was therefore to describe the dialogue process and possible working mechanisms of one systems nursing intervention model, the Family Health Conversation model. A descriptive evaluation design was applied and 15 transcribed conversations with five families were analyzed within a hermeneutic tradition. Two types of interrelated dialogue events were identified: narrating and exploring. There was a flow between these events, a movement that was generated by the interaction between the participants. Our theoretically grounded interpretation showed that narrating, listening, and reconsidering in interaction may be understood as supporting family health by offering the families the opportunity to constitute self-identity and identity within the family, increasing the families' understanding of multiple ways of being and acting, to see new possibilities and to develop meaning and hope. Results from this study may hopefully contribute to the successful implementation of family systems interventions in education and clinical praxis.
Family history and the life course
Elder, G.H. Jr.
(1977)
Family intervention to prevent depression and substance use among adolescents of depressed parents
Mason, W. A., Haggerty, K. P., Fleming, A. P., & Casey-Goldstein, M.
(2012)
Parental depression places offspring at elevated risk for multiple, co-occurring problems. The purpose of this study was to develop and preliminarily evaluate Project Hope, a family intervention for the prevention of both depression and substance use among adolescent-aged children (M = 13.9 years) of depressed parents. The program was created by blending two empirically supported interventions: one for depression and another for substance use. Thirty families were randomly assigned to either Project Hope (n = 16) or a wait-list control condition (n = 14). Pretests, posttests (n = 29), and 5-month follow-ups (n = 28) were conducted separately with parents and youth via phone interviews. Questions asked about the family depression experience, family interactions, family management, coping, adolescent substance use beliefs and refusal skills, adolescent depression, and adolescent substance use. Project Hope was fully developed, manualized, and implemented with a small sample of targeted families. Engagement in the program was relatively high. Preliminary outcome analyses were conducted using 2 (Group) ×3 (Time) analyses of covariance. Results provided some evidence for significant improvements among intervention compared to control participants in indicators of the family depression experience, family management, and coping, and a statistically significant decrease from pretest to posttest in alcohol quantity for intervention compared to control youth. Next steps for this program of research are discussed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)
Family intervention with bereaved children
Black, D. & Urbanowicz, M
(1987)
This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed
Family intervention with bereaved children
Black, D., & Urbanowicz, M.
(1987)
This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed.
Family intervention with families bereaved or about to be bereaved
Black, D.
(1991)
Family Intervention: Telephone Tracking (FITT): A Pilot Stroke Outcome Study
Bishop D, Miller I, Weiner D, Guilmette T, Mukand J, Feldmann E, et al.
(2014)
Objective: The goal of this study was to preliminarily test the efficacy of a telephone intervention, Family Intervention: Telephone Tracking, designed to assist stroke survivors and their primary caregivers during the first 6 months after stroke. Method: Forty-nine stroke survivors and their caregivers were randomly assigned to treatment as usual or treatment as usual plus the telephone intervention. Global outcomes are reported for health care utilization, family functioning, and general functioning. Results: Family and general functioning were positively and significantly changed at 3 and 6 months. Health care utilization was positively and significantly changed at 3 months. Conclusion: Findings suggest that the model has the potential to decrease health care utilization and improve quality of life for stroke survivors and their caregivers. Further study is warranted.
Family Issues in Later-Life Depression
Hinrichsen, G. A., & Zweig, R.
(1994)
Family member´s expectation of the psychiatric health-care professionals´ approach towards them
Ewertzon, M., B. Andershed, et al.
(2011)
The importance of involving family members in the care of individuals with schizophrenia or other psychotic illnesses has received increasing attention within psychiatric healthcare services. However, several studies suggest that family members often experience a lack of involvement. Furthermore, research indicates that family members' experience of the professional's approach has bearing on whether they feel involved or not. Thus, the aims of this study were to investigate the level of importance that the family members of individuals with schizophrenia or other psychotic illnesses ascribe to the professionals' approach, the level of agreement between their experiences and what they consider as important, and aspects they consider to be important with regards to contact with professionals. Seventy family members from various parts of Sweden participated. Data were collected by the Family Involvement and Alienation Questionnaire and open-ended questions. The median level and quartiles were used to describe the distribution, and percentage agreement was analysed. Open-ended questions were analysed by qualitative content analysis. The results reveal that the majority of the participants consider Openness, Confirmation, and Cooperation as important aspects of a professional's approach. Continuity emerged as an additional aspect. The results show a low level of agreement between the participants' experience and what they consider as important.
Family members' experiences with intensive care unit diaries when the patient does not survive
Johansson Maria, Wåhlin, Magnusson Lennart, Runeson Ingrid
(2019)
Abstract [en]
OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).
METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.
FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.
CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.
Family members' experiences with intensive care unit diaries when the patient does not survive
Johansson Maria, Wåhlin Ingrid, Magnusson Lennart, Runeson Ingrid, Hanson Elizabeth
(2018)
Abstract [en]
OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).
METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.
FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.
CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.
Family members' narrated experiences of communicating via video-phone with patients with dementia staying at a nursing home
Sävenstedt, S., Brulin, C., & Sandman, P. O.
(2003)
Family members' strategies when their elderly relatives consider relocation to a residential home - Adapting, representing and avoiding
Söderberg, M., Ståhl, A., & Melin Emilsson, U.
(2012)
The aim of this article is to reveal how family members act, react and reason when their elderly relative considers relocation to a residential home. Since family members are usually involved in the logistics of their elderly relative's relocation, yet simultaneously expected not to influence the decision, the focus is on how family members experience participation in the relocation process in a Swedish context. 17 family members are included in 27 open, semi-structured interviews and follow-up contacts. Prominent features in the findings are firstly the family members' ambition to tone down their personal opinions, even though in their minds their personal preferences are clear, and secondly, the family members' ambivalence about continuity and change in their everyday lives. Family members are found to apply the adapting, the representing, or the avoiding strategy, indirectly also influencing their interaction with the care manager. Siblings applied the adapting strategy, spouses the representing strategy, while family members in the younger generation at times switched between the strategies.
Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study
Hajradinovic Y.,Tishelman C., Lindqvist O., Goliath I.
(2018)
Abstract:
Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings. Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times. Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.
How adult beliefs shape the speech communities of a child who has multiple disabilities
Tucker, P. J. and R. R. Kretschmer
(1999)
Ethnographic and micro-ethnographic techniques were used to investigate how the strategies employed by two adults (a mother and a physical therapist) to initiate and maintain interactions with a 2-year-old child with multiple disabilities were reflective of the adult partner's beliefs and values about communication in general and about this child in particular. Results indicate that the physical therapist believed in using the child's existing abilities as the primary reference point for establishing a speech community with the child. The mother used the demands of the larger, mostly nondisabled speech community as her primary reference point. How these differences affect the nature of the child's membership and level of independence in these speech communities is discussed
How can web-based training facilitate a more carer friendly practice in community-based health and social care services in Norway? Staff experiences and implementation challenges
Hanssen, H. Norheim, A. Hanson, E.
(2017)
It is a central feature of current Norwegian health and social care policy to see informal carers as active partners. However, research has revealed that carers often experience a lack of recognition by professionals. In 2010, the Norwegian Directorate of Health initiated a web-based competence-building programme (CBP) for health and social care practitioners aimed at facilitating collaboration with carers. The programme comprised case presentations, e-lectures, exercises and topics for discussion, and was introduced in 2012. It was flexible and free of charge. This article is based on a study (2012-2013) that followed the piloting of this CBP in four settings. The study aimed to explore factors that influenced the implementation of the programme and whether or not using it affected health and social care practitioners' attitudes and perceived capacity for collaboration with carers. The study employed a mixed-methods design. A questionnaire was distributed to all staff before and 5 months after the CBP was introduced, followed by focus group interviews with a sample of staff members and individual interviews with the leadership in the involved settings and those who introduced the programme. The quantitative data were analysed using descriptive statistics, which subsequently formed the basis for the focus group interviews. The qualitative data were analysed by means of content analysis. The programme's introduction was similar across all research settings. Nevertheless, whether or not it was adopted depended to a large extent on leadership commitment and engagement. In settings where the programme's use was monitored, supported by management and formed part of on-the-job training, there seemed to be a positive impact on staff attitudes concerning collaboration with carers. Participant staff reported that their awareness of, motivation for and confidence in collaboration with carers were all strengthened. In contrast, the programme was of minimal benefit in settings with low leadership engagement.
How children cope with mother's breast cancer
Issel LM, Ersek M, Lewis FM.
(1990)
Few studies have focused on the child of a parent with cancer. Family systems and cognitive development theories suggest that the mother's illness affects the children and that families take action to help them. This study describes the ways in which school-age children cope with the mother's breast cancer and the ways in which their families help them cope. The results are based on semistructured interviews with 81 children 6-20 years old whose mothers had been diagnosed with breast cancer within the past two-and-a-half years. Interviews were tape-recorded, transcribed, and content analyzed. Eighty-four percent agreement on interrater reliability was achieved using three independent trained coders. Children and families used four types of strategies: acted as though they were in her shoes, carried on business as usual, tapped into group energy, and put her illness on the table. Parents, other family members, the children's friends, and adult friends helped the children. The results suggest ways that clinicians can understand the effect of the mother's breast cancer from the child's perspective and thus facilitate both the child's coping and the family's attempts to help the children.
How do officially organized services meet the needs of elderly caregivers and their spouses with Alzheimer's disease?
Raivio, M., Eloniemi-Sulkava, U., Laakkonen, M. L., Saarenheimo, M., Pietilä, M., Tilvis, R., et al.
(2007)
How equitable is Sweden's changing care-mix? - linking individual and regional characteristics over time
Davey, A., Savla, J., & Sundström, G.
(2007)
How family members of a person suffering from mental illness experience psychiatric care
Sjöblom L-M, Wiberg L, Pejlert A, Asplund K.
(2008)
Objective The aim of this study was to describe the experience of contact with formal psychiatric care, as narrated by family members of a person suffering from mental illness. Method The study was based on a qualitative design. Focus-groups with 16 family members were transcribed and interpreted using qualitative content analysis. Findings The findings present four themes; being disappointed with formal psychiatric care, being in need of understanding from and collaboration with formal psychiatric care, being positive about the care and the own contribution to the care and being subjected to preconceived ideas. The findings were interpreted as the families relationship with formal psychiatric care being characterized by a struggle for power. Conclusion To create a healthy situation for the families and thereby improve the situation for the patient, representatives of formal care should carefully consider how the families should be involved. Key words Family, focus groups, mental health, nursing, qualitative research
How family members of a person suffering from mental illness experience psychiatric care
Sjöblom, Lena-Marie, Wiberg, L., Pejlert, Anita & Asplund, Kenneth
(2008)
How family members of a person suffering from mental illness experience psychiatric care
Sjöblom, L., Wiberg, L., Pejlert, A., & Asplund, K.
(2008)
How older adults and the informal carers prevent falls: An integrative review of the literature
Wilkinson A, Meikle N, Law P, Yong HJ, Butler P, Kim J.
(2018)
Abstract
Falls in older persons are prevalent and costly for the individual and the health system. Falls prevention guidelines have been developed from best evidence to minimise falls in older persons.
Aim: To synthesise the literature on falls prevention strategies used by community dwelling older persons and/or their informal carers and to compare the commonly adopted strategies with those recommended by falls prevention guidelines.
Data sources: Health sciences databases for full text articles published in English plus reference list searching of included articles.
Review method: An integrative review approach. Studies were included if they identified fall prevention management strategies used by community dwelling older adults and/or their informal carers. Quality appraisal was undertaken using appropriate Joanna Briggs Institute critical appraisal tools. Information relevant to the aim of the review were extracted and coded into categories then inductively sorted into sub-themes and themes.
Results: Of the seventeen studies included in the review, eleven identified older adults' falls prevention strategies, two investigated fall prevention strategies used by carers, and four explored perspectives of older persons together with their carers, representing the perspectives of an estimated 501 older persons and 102 carers. Strategies used by older adults arose because of self-awareness about their changing physical ability, and advice and support mainly from family or friends. Carer fall prevention strategy was predominantly around protection of the older adult from falling by discouraging independence.
Conclusions: The fall self-management strategies adopted by older adults and their carers to prevent falls, in the main, do not align with international best practice fall prevention guidelines.
Hur bedömer man behov som kolliderar? En kvalitativ vinjett- och inervjustudie om biståndshandläggares hantering av etiska dilemman i ärenden där makar har olika behov och önskemål
Juslin Ellen
(2015)
Det övergripande syftet med denna studie är att genom undersökning och analys söka en
förståelse för hur individens självbestämmande beaktas och hur intressemotsättningar mellan
makar hanteras av några av Stockholms stads biståndshandläggare. Studien fokuserar på
intressemotsättningar i form av att den ena maken/makan vill bo kvar hemma medan den
andra maken/makan inte orkar med den påfrestning det innebär att ha en vårdkrävande
make/maka i hemmet. Studien innefattas av tio av Stockholms stads biståndshandläggares
ageranden och reflektioner kring de etiska dilemman som uppstår i ärenden där makars behov
och/eller åsikter om stödinsatser kolliderar. Syftet kan benas upp i följande övergripande
frågeställningar:
- Hur reflekterar handläggare kring självbestämmande för en hjälpbehövande äldre
person och kring stöd till maken/makan?
- Hur reflekterar handläggare kring möjliga ageranden då den äldre personen och
dennes makes/makas åsikter går isär?
- Hur uppfattar biståndshandläggare handlingsutrymmet för att kunna stödja båda den
äldre och dennes make/maka?
Hur får vi det vi behöver? Föräldrar och habiliterare berättar om möten, strukturer och förutsättningar inom Barn- och ungdomshabiliteringen
Stenhammar, Ann-Marie & Ulfhielm, Karin
(1998)
Hur hjälper jag mitt barn?
Tytti Solantaus, Antonia Ringbom
(2007)
Boken vänder sig till psykiskt sjuka föräldrar och försöker förklara de känslor och reaktioner barnet kan ha inför föräldrarnas svårigheter. Man tar upp skuldkänslor och skam samt uppmuntrar till att söka hjälp från någon annan vuxen eller t ex barnavårdscentralen.
Hur kan kommuner planera för äldres boende nu och i framtiden? : Resultat och erfarenheter från projektet Inte(GR)erad bostadsplanering med fokus på äldre
Nordenhielm, S
(2012)
Idag finns inte tillräckligt med goda och tillgängliga bostäder som kan möta behoven hos en åldrande befolkning. Kommunerna äger frågan om bostadsplaneringen för äldre, men vilken kunskap och information behöver kommunerna för att kunna planera för goda och attraktiva bostäder för äldre? Och hur kan den kunskapen hämtas in? I projektet Inte(GR)erad bostadsplanering med fokus på äldre har FoU i Väst/GR, GR Planering och GR-kommunerna Ale, Härryda, Kungälv, Mölndal och Tjörn samverkat kring dessa frågor. I denna skrift sammanfattas arbetssätt, resultat och erfarenheter från projektet.
Hur många barn växer upp med föräldrar som har alkoholproblem? – Resultat från en systematisk litteraturöversikt
Ramstedt Mats (red)
(2019)
Sammanfattning
Mot bakgrund av osäkerheten om hur många barn i Sverige som växer upp med föräldrar som
har alkoholproblem genomfördes en litteraturöversikt inom området av den internationella
vetenskapliga litteraturen och av den nordiska "grå litteraturen", dvs. studier som inte publicerats i vetenskapliga tidskrifter. Tanken var att resultaten i dessa översikter skulle ligga till
grund för att ta fram skattningar av hur stor denna grupp av utsatta barn är i Sverige idag.
Översikten identifierade endast 23 vetenskapliga studier som skattat hur många barn som växer
upp med föräldrar som har alkoholproblem. Dessa studier var begränsade till USA, Norden och
Storbritannien. Genomgången av nordisk grå litteratur identifierade ytterligare 9 studier.
Hur påverkas vuxna barn av att ha en åldrande förälder?
Norén, Anna
(2020)
Sammanfattning
Denna rapport undersöker hur vuxna barns arbetsutbud och hälsa påverkas av att ha en åldrande förälder i behov av omvårdnad. I uppsatsen undersöks det ökade omvårdnadsbehovet dels under föräldrars sista år i livet och dels som följd av en stroke. Effekten av att ha en åldrande förälder med förhöjt omvårdnadsbehov studeras genom att jämföra söners och döttrars sysselsättning, inkomst och hälsa före och efter det att föräldern dör respektive får en stroke. Studien visar att sysselsättning och inkomst sjunker något under förälderns sista år i livet, men att effekten är störst under det år, och året efter, förälderns död. Det finns också tecken på att döttrars sjukskrivning ökar det år föräldern avlider. Däremot påverkas inte sysselsättning och inkomst bland vuxna barn till föräldrar som drabbas av stroke. Det finns heller inga tydliga könsskillnader i effekterna. Sammantaget tyder resultaten på förälderns omsorgsbehov har en begränsad påverkan på vuxna söners och döttrars arbetsutbud.
Hur ska vi bemöta demenssjuka? : en handbok för vårdpersonal och anhöriga.
Polmé, O. & Lyons, L.
(2008)
Hur stöttas den som hjälper? : Kommunernas stöd till anhöriga som vårdar äldre närstående (Meddelande / Länsstyrelsen, Jönköpings län; 2004:28).
Karlsson, M.
(2004)
Hur vet vi att det hjälper? Om effektutvärdering av Stödgrupper för barn och ungdomar
Skerfving, A.
(2012)
Hva er Innvandring
Brochmann, G.
(2006)
Hvad med os? Etnicke minoriteter – en udfordring I fremtidens œldreomsorg
Lindblad, P. and G. Mølgaard
(1995)
Hvad med os? Etnicke minoriteter – en udfordring I fremtidens œldreomsorg
Lindblad, P. and G. Mølgaard
(1995)
Hverdagen med demens - billeddannelser og hverdagserfaringer i kulturgerontologisk perspektiv.
Swane C.
(1996)
Hypnosis treatment of sleeping problems in children experiencing loss
Hawkins, P. & Polemikos, N.
(2002)
There is considerable research and clinical evidence that children who experience loss become traumatized. The results of traumatization include sleeping problems, for example difficulties in initiating sleep and sleep terrors. Psychological intervention programmes, including hypnotherapy, have been shown to have some success in helping children to overcome their sleeping problems. In the present study, a new paradigm qualitative methodology was used in which a small group of children were taught self-hypnosis to manage their sleep difficulties. Within the group, the children's experiences of utilizing self-hypnosis at home were discussed, and a consensus reached concerning its effects. Complementary data were collected through interviews with caregivers and by completion of the Southampton Sleep Management Schedule (Bartlet and Beaumont, 1998). From the study it was concluded that young children can be taught self-hypnosis in order to manage their sleeping problems effectively. Furthermore, the present study demonstrated that children can be involved in a collaborative research group.
Hälsa och välbefinnande för barn och ungdomar med funktionsnedsättning - En vägledning genom WHO:s hälsoklassifikation ICF-CY
Adolfsson Margareta
(2015)
Ett barns hälsa och välbefinnande bestäms av så mycket mera än att vara fri från sjukdom. Världshälsoorganisationen (WHO) beskriver hälsa som fysiskt, psykiskt och socialt välbefinnande. Detta visar att ett barn med funktionsnedsättning kan må bra om det ges förutsättningar att fungera i de miljöer där barnet vistas regelbundet. Ett barns vardagsfungerande kan bedömas och beskrivas på ett allsidigt sätt med stöd av WHO:s hälsoklassifikation Internationell klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY. Den bidrar med en modell som fokuserar på funktionella beskrivningar av barnets vardagssituationer som ett nödvändigt komplement till en diagnos. Eftersom en diagnos aldrig kan ge information om ett individuellt barns fungerande, behövs det funktionella perspektivet vid planering av åtgärder som kagöra ett barn mera delaktigt i olika aktiviteter. Socialstyrelsen förordar en ökad användning av klassifikationen, vilket har gjort att många verksamheter, som arbetar med barn och ungdomar, utvecklar arbetsmodeller som bygger på ICF-CY. Därför behöver föräldrar, liksom alla andra som finns runt ett barn med funktionsnedsättning, kunskap om den värdegrund som bildar bas för hälsoklassifikationen.
Kunskapsöversikten vägleder läsaren genom ICF-CY och lyfter fram exempel på hur den kan bidra till en överblick över ett barns hälsa och välbefinnande. Vägledningen vill underlätta samverkan genom att belysa hur ICF-CY kan bli en gemensam struktur och ett gemensamt språk för formulering av ett barns problem och behov ur olika synvinklar. Även om de exempel som beskrivs fokuserar på barn, är värdegrunden och innehållet i klassifikationen lika användbart för vuxna. Vägledningen är inte tänkt att läsas i ett streck från början till slut. Innehållet är ordnat i flera delar så att läsaren först ska få en bakgrund med en övergripande information om ICF-CY för att sedan lotsas allt djupare in i såväl modellen som klassifikationen. I slutet presenteras hur klassifikationen kan användas för att definiera ett barns problematik. Förhoppningen är att läsaren ska kunna ta fram skriften och hitta de avsnitt som kan ge ett stöd för att beskriva ett barns aktuella situation och behov inför en habiliteringsplanering, upprättandet av åtgärdsprogram, en vårdbidragsansökan eller vid övergången från en skola till en annan. Den kan på det viset ses som ett uppslagsverk i ämnet barn och ungdomars hälsa och välbefinnande, eller kanske lika gärna, i barn och ungdomars vardagsfungerande.
Hälsa på lika villkor? Hälsa och livsvillkor bland personer med funktionsnedsättning
Boström, Gunnel
(2008)
Hälsans mysterium
Antonovsky, A.
(1987)
Den mänskliga tillvaron är full av påfrestningar – motgångar, krav, konflikter och olika slags problem som måste lösas. Vad är det som gör att en del av oss klarar av svåra påfrestningar med hälsan i behåll – och till och med kanske växer och vidareutvecklas av det? Detta är den fråga Antonovsky ställer. Hans svar är att motståndskraften beror på vår känsla av sammanhang, KASAM (på engelska SOC, Sense of Coherence), dvs den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar. Han diskuterar hur denna känsla byggs upp hos barn och vuxna och på vilket sätt den inverkar på vår hälsa. Han presenterar ett testinstrument för att mäta den och han redogör för olika forskningsresultat som stöder hans tes om dess stora betydelse. Boken gavs ut 1991 i Sverige och har sålt i 40.000 exemplar sedan dess. Den har betytt mycket för vändningen inom medicinsk forskning, från en total koncentration på sjukdomsförloppet och patogenesen till ett studium av friskfaktorerna och salutogenesen.
Hälsans mysterium
Antonovsky A.
(2005)
Vad är det som gör att en del av oss klarar av även mycket svåra påfrestningar med hälsan i behåll – och kanske till och med växer och vidareutvecklas av dem? Författarens tes är att motståndskraften beror på vår känsla av sammanhang, d v s den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar.
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Hälso- och sjukvårdens ansvar för information, råd och stöd till vissa barn under 18 år. Meddelandeblad
Socialstyrelsen
(2010)
För att förbättra särskilt utsatta barns situation fick hälso- och sjukvården den 1 januari 2010 en skyldighet att beakta barnens behov av råd, stöd och information. Det gäller om en förälder har en psykisk störning eller funktionsnedsättning, en allvarlig fysisk sjukdom, är missbrukare eller oväntat avlider. Bestämmelserna finns i HSL och LYHS.
Hälsoekonomisk studie av barn och vuxna med fetalt alkoholsyndrom
Ericson Lisa, Hovstadius Bo, Magnusson Lennart
(2015)
Denna hälsoekonomiska studie är en beräkning av samhällets årliga kostnader för fetalt alkoholsyndrom (FAS) i Sverige. Att dricka alkohol under graviditeten kan skada fostrets utveckling, framför allt utvecklingen av dess hjärna, och kan leda till allvarliga och livslånga funktionsnedsättningar och funktionshinder. FAS ör en medicinsk diagnos som beskriver de skador som kan uppstå då fostret exponeras för alkohol. Den årliga totala samhällskostnaden för FAS år 2014 beräknades till närmare 14,4 miljarder.
Hälsopedagogik för vårdare och brukare i samarbete. En introduktion till bemästrande
Vifladt Egon, Hopen, Liv, Landtblom, Anne-Marie
(2010)
Ett hälsopedagogiskt förhållningssätt i vården kan skapa ett bättre samarbete mellan sjukvård och brukare för att ge dem som drabbats bästa möjliga förutsättningar i livet. Tyvärr används inte kunskapen på bästa sätt idag.
Hälsosamtal och förebyggande hembesök : en lägesrapport
Söderhielm Blid, S.
(2007)
Hänger din mammas trygghet på dig? : att kombinera jobb med omsorg om föräldrar
Lorentzi U.
(2011)
Sedan 1980-talet har den offentligt finansierade äldreomsorgen minskat dramatiskt samtidigt som andelen äldre i befolkningen har ökat kraftigt. Andelen äldre, 80 år och äldre, som får offentlig äldreomsorg har minskat från 62 procent 1980 till 37 procent 2006. Under 2000-talet har samhällets kostnad för äldreomsorg fortsatt att minska, både i faktisk kostnad och som andel av BNP. Antalet anställda i äldreomsorgen har också minskat. I takt med att den offentligt finansierade äldreomsorgen har dragit sig tillbaka har de äldres anhöriga tagit ett större omsorgsansvar. Framför
allt har de äldres döttrar ökat sina insatser sedan 1990-talet. Data från SCB för 2010 visar att anhörigomsorgen fortsätter att öka även under de senaste fem åren. I rapporten redovisas vem som hjälper hemmaboende äldre, 75 år eller äldre, som behöver hjälp med åtminstone en av insatserna städning, tvätt, matinköp, matlagning eller bad/dusch. Ungefär hälften av gruppen får hjälp av kommunen. Det är samma nivå som i slutet av 1980-talet, men fler äldre med stora hjälpbehov bor hemma idag än för tjugo år sedan. Två tredjedelar får den här hjälpen, alltså hjälp med städning, tvätt, matinköp, matlagning eller bad/dusch, av en nära anhörig eller vän som de inte bor med. Motsvarande siffra i slutet av 1980-talet var 40 procent. Nästan en tredjedel av de hemmaboende äldre, 75 år och äldre, med hjälpbehov får den här hjälpen av en dotter. Ungefär 14 procent får hjälpen av en son. Anhörigomsorgen är inte gratis, varken för de som ger omsorg eller för samhället. Bland medelålders kvinnor som ger omfattande omsorg till närstående äldre står 40 procent utanför arbetskraften jämfört med 30 procent av medelålders kvinnor utan omsorgsansvar. Uppskattningsvis 100 000 personer anger vård av anhörig som främsta skäl till att de gått ned i arbetstid eller helt slutat arbeta. Utöver att dessa personer själva får lägre arbetsinkomst när de jobbar deltid eller helt står utanför arbetskraften, så förlorar samhället i uteblivna skatteintäkter. Kommunal menar att de utmaningar som Sverige står inför, bristande
arbetskraftsutbud och välfärdens framtida finansiering, hänger ihop. För att fler ska kunna jobba mer behövs en välfungerande social infrastruktur med barnomsorg och äldreomsorg. När fler jobbar mer ökar även skatteintäkterna så vi har råd med offentligt finansierade välfärdstjänster av hög kvalitet.
I den äldres tjänst: äldreassistent - ett framtidsyrke
SOU 2008:126
(2008)
I den äldres tjänst: äldreassistent - ett framtidsyrke
SOU 2008:126
(2008)
'I don't have any other choice': Spouses' experiences of placing a partner in a care home for older people in Sweden
Lundh, U., Sandberg, J., & Nolan, M.
(2000)
I en verden uden ord : førstehåndsviden som forudsætning for kommunikation - etnometodologi som metode
Goode, David
(2001)
Under Rubellasyndrom-epidemien i 1960'erne blev mange børn født døve, blinde og udviklingshæmmede. Forfatteren prøver i denne bog at komme nærmere en forståelse af disse menneskers virkelighed, en verden uden ord, men ikke uden kommunikation. Bogen er et resultat af forfatterens undersøgelser af to børn født døvblinde og udviklingshæmmede
I gränslandet mellan hem och institution - Hyresgästers perspektiv på att ha bostad med särskild service
Skårner, A.
(2012)
Vad tycker människor med psykiska funktionsnedsättningar och en komplex livssituation om att få ett varaktigt boende i form av gruppbostad med särskild service?
I kroppen min : vägsjäl
Gidlund, Kristian
(2014)
"Vår berättelse närmar sig sitt slut. Och vår figur klamrar sig fast på vrakets krutdurk på det öppna havet. Molnen hopar sig. Från och med nu blir allt han skriver korta fragment som han ristar in i tunnans trä."
Efter den hyllade debutboken I kroppen min kommer nu Kristian Gidlunds avslutande texter från bloggen med samma namn. Texterna återspeglar Kristians tankar och känslor under de sista sju månaderna av hans liv. Boken innehåller också Emma Svenssons bilder från fotoutställningen om Kristian Gidlund.
Han hade ett sjömanshjärta i sitt bröst. Han sökte äventyret. Han älskade livet. Kristian Gidlund, författaren, journalisten och musikern avled den 17 september 2013. Han blev 29 år gammal.
"Kristian Gidlund gjorde verkligen skillnad, helt på egen hand. Ingen som hörde hans röst, precisionen och modet i varenda formulering, kunde låta bli att stanna upp, lyssna och långsamt förändras. Han lärde oss att dö men också att leva." Åsa Beckman Dagens Nyheter
"När jag läste hans betraktelser ville jag bara dansa i regnet, bada i en ljummen sjö, älska, gråta, skratta, känna, och rida rätt ut i skogen." Sanna Lundell Aftonbladet
"Hans lyriska formuleringar blir till trollformler som genererar liv bara man läser dem med tillräcklig intensitet. Naturligtvis är det oerhört tragiskt och tårdrypande. Men här finns också värme och humor som på samma gång balanserar upp tragiken och förstärker den."Norrköpings Tidningar
"Han var just så varm, just så orädd, just så klok, just så stark, just så vacker - och omöjlig att inte älska... Den svidande skönheten i de texter han med sån poetisk stringens, och sån osentimental men likafullt hjärtskärande öppenhjärtighet, formulerade." Per Bjurman Aftonbladet
"Styrkan i Gidlunds eviga berättande var inte att döden lurade runt hörnet, utan att hans texter genomsyrades av en oerhörd livslust. Han påminde ständigt om att han levt ett rikt liv. "Glöm aldrig det", skrev han i den poetiskt tecknade boken." Sydsvenska Dagbladet
"Sällan har någons skrivande varit mer meningsfullt än Kristian Gidlunds." Östgöta Correspondenten
Foster children: a longitudinal study of placements and family relationships
Andersson, G.
(2009)
Foster children's family relationships have been one of the themes in a longitudinal study, starting with a disadvantaged group of children, 0–4 years of age when taken into care and placed in a children's home in Sweden. Seven rounds of data collection were carried out; the last two when the children were young adults. This article is about those 20 children in the study group who, in addition to temporary residential care at an early age, have experiences from foster care, either for the remainder of their childhood or before or after a period of reunion. Placement history is put in relation to family relationships, i.e. relationships to birth family and foster family. The categorisation in secure and insecure relationships or attachment patterns is based on interviews with the young adults, with a retrospect of previous relationships. The connection between placement history and family relationship is not obvious in this high-risk group. However, inclusive attitudes from the foster family towards the child's family promote continuity and a sense of security, also in periods of reunion or re-placement, and facilitate foster children's hard work in coming to terms with their family background and finding their own way.
Foton från min dag. Om bilder och bilddagböcker – erfarenheter från DIKO-projektet
B. & Andersson, A.
(2014)
Increasing functional communication in non-speaking preschool children: Comparison of PECS and VOCA
Bock, S. J., Stoner, J. B., Beck, A. R., Hanley, L., & Prochnow, J.
(2005)
For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.
Increasing functional communication in non-speaking preschool children: Comparison of PECS and VOCA.
Bock, S. J., Stoner, J. B., Beck, A. R., Hanley, L., & Prochnow, J.
(2005)
For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.
Framgångsrika preventionsprogram för barn och unga. En forskningsöversikt
Ferrer-Wreder, L.; Stattin, H.; Cass Lorente, C.; Tubman, J.G. & Adamson, L.
(2005)
Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.
Framgångsrika preventionsprogram för barn- och unga. En forskningsöversikt.
Ferrer-Wreder L, Stattin H, Cass Lorante C, Tubman JG, Adamsson L.
(2005)
Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.
Framtidens anhörigomsorg - kommer de anhöriga vilja, kunna, orka ställa upp för de äldre i framtiden?
Sundström, G., & Johansson, L.
(2004)
Framtidens anhörigomsorg. Kommer de anhöriga vilja, kunna, orka ställa upp för de äldre i framtiden? (förf. Johansson L. & Sundström G.)
Socialstyrelsen
(2004)
Frequency of occurrence and child presence in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development
Axelsson AK, Wilder J.
(2013)
Objectives:
The objective was to investigate the performance aspect of participation, operationalized as the frequency of occurrence of family activities and child presence in these activities for children with profound intellectual and multiple disabilities (PIMD) and children with typical development (TD). The focus was also on how family and child characteristics are related to the frequency of occurrence of family activities. This is part of a larger research project investigating facilitating factors for participation in children with PIMD.
Methods:
A descriptive, comparative study was performed using a questionnaire developed for the purpose.
Results:
In the families with a child with PIMD, the majority of activities occurred less often than in families with children with TD. In both groups, relationships were found between the frequency of occurrence of family activities and total family income, as well as the educational level of the parents. For children with PIMD, motor ability, cognition, health, and behaviour, were related to frequency of occurrence. Moreover, the presence of the children in the activities differed in the two groups; the children with PIMD were present in the activities less often.
Discussion:
Considering a long-term perspective, low occurrence of family activities and child presence may affect child development and everyday functioning. Knowledge about factors related to the occurrence of family activities and child presence in them, as well as an understanding of its causes, can promote the provision of everyday natural learning opportunities for children with PIMD.
Fri eller förankrad? :En empirisk studie av volontärverksamhet och ideella insatser inom stiftelsen stora Sköndal (Sköndalsinstitutets arbetsrapportserie, 1402-277x ; 30).
Engel, C.
(2003)
Friends in need': designing and implementing a psychoeducational group for school children from druginvolved families.
Dore MM, Nelson-Zlupko L, Kaufmann E. '
(1999)
Despite widespread recognition of the risks that parental drug use pose to children, few resources are available to help such children. Using a developmental intervention approach, the authors designed and tested a model curriculum for use with groups of latency-aged children in schools located in communities where drug use is pervasive. In implementing this curriculum, the authors documented the need that children affected by family drug use have for workable strategies and skills for coping with aversive environments. The responsiveness of group participants to structure, predictability, and affirmation in the groups was remarkable. Measurable changes occurred in classroom behavior and feelings of self-worth. Obstacles to implementing and testing such an intervention are discussed.
Frightened, threatening, and dissociative parental behavior in low-risk samples: Description, discussion, and interpretations
Hesse, E., & Main, M.
(2006)
In 1990 we advanced the hypothesis that frightened and frightening (FR) parental behavior would prove to be linked to both unresolved (U) adult attachment status as identified in the Adult Attachment Interview and to infant disorganized/disoriented (D) attachment as assessed in the Ainsworth Strange Situation. Here, we present a coding system for identifying and scoring the intensity of the three primary forms of FR behavior (frightened, threatening, and dissociative) as well as three subsidiary forms. We review why each primary form may induce fear of the parent (the infant's primary "haven of safety"), placing the infant in a disorganizing approach-flight paradox. We suggest that, being linked to the parent's own unintegrated traumatic experiences (often loss or maltreatment), FR behaviors themselves are often guided by parental fright, and parallel the three "classic" mammalian responses to fright: flight, attack, and freezing behavior. Recent studies of U to FR, as well as FR to D relations are presented, including findings regarding AMBIANCE/FR+. Links between dissociation, FR, U, and D are explored. Parallel processing and working memory are discussed as they relate to these phenomena.
Frivilliga organisationers insatser för äldre : En studie av sociala insatser och intresseorganisering i Leksands kommun (Arbetsrapport).
Johansson, Y.
(2002)
Frivilliga sociala insatser och socialtjänsten i Halland (Meddelandeserien / NFoU- FoU-enheten, kommunförbundet Halland ; 2002:6).
Jönsson, B.
(2002)
Frivilligarbetare – varför då?
Bergström, Helén & Johansson, Stina
(2007)
Frivilligorganisationer i Halmstads kommun : En fallstudie över frivilligorganisationernas medverkan inom äldreomsorgen (Meddelandeserien / NFoU - FoU-enheten, kommunförbundet Halland ; 2002:5).
Lindgren, N.
(2002)
Frivilligorganisationerna och anhörigstödet (Anhörig 300).
Dahlberg, L.
(2002)
Frivilligt socialt arbete: kartläggning och kunskapsöversikt
Almberg, B., Grafström
(2001)
From Broken Attachments to Earned Security: The Role of Empathy in Therapeutic Change (The John Bowlby Memorial Conference Monograph Series)
ODGERS, A.
(2014)
The 2011 John Bowlby Memorial Conference, 'From Broken Attachments to Earned Security - The Role of Empathy in Therapeutic Change', focussed on what needs to take place to facilitate empathy and attunement and ultimately the achievement of earned security. The confernce posed the challenge of how to re-establish a secure sense of self, mutuality, and the capacity for inter/intra-subjectivity when difficulties in empathy and attunement exist as a result of relational trauma. This can be between parent and child, within adult relationships, between client and therapist, or in organisational contexts.
The outstanding collection of papers in this volume make a significant contribution to the field of attachment and our understanding of how child rearing affects each aspect of our lives, from the interpersonal to the organisational and societal. Each paper moves beyond the academic and theoretical to provide answers to the many difficult questions raised at the conference.
The practical, sometimes step-by-step explanation of the use of empathy in one-to-one clinical work, in health service organisations or society generally, offer a positive and hopeful way forward. All of the presenters faced up to the challenges of repairing or reversing the impact of derailed attachments and the toxic impact of trauma, offering a realistic but hopeful route to improved relating and healthier attachments.
This publication will be a valuable resource for students, seasoned practitioners, and health service professionals alike who want to enhance their understanding of empathy and attachment in this demanding field.
Subject areas covered by your book in order of importance and key subject area:
- causes of insecure attachments
- impact of relational trauma
- how to re-establish a secure sense of self
- working one to one and in organisational settings
From Burden to Depressive Symptoms: The Case of Chinese-Canadian Family Caregivers for the Elderly
Lai, D. W.
(2009)
Individualization and Institutionalization of Childhood in Today´s Europe
Näsman, E.
(1994)
Individualization, evaluation and development of family care support. Research overview 2010:2 (In Swedish)
Winqvist, M.
(2010)
Funksjonshemningen og det normale – om nödvändigheten av å balansere
Solvang, Per
(2000)
Funktionshinder och strategival. Om att hantera sig själv och sin omvärld
Peterson, G., Ekensteen, W & Rydén, O
(2006)
Hur upplever och hanterar vuxna personer med stora rörelsehinder sin situation och sig själva? Hur hanterar funktionshindrade sina kontakter med vårdbyråkratin och med allmänheten? Hur påverkas självbild och livssyn av att leva med stora rörelsehinder? Det bärande temat i Funktionshinder och strategival är en kritik av den medikalisering som beskriver och formar funktionshindrade människors tillvaro; sjukförklaringen, omyndigförklaringen samt dikotomin i starka och svaga. Boken vänder sig emot ett utbrett grundantagande om funktionshindrade människors tragedi och speglar både ett inifrån- och ett utifrånperspektiv så att både de läsare som lever med funktionshinder och de som möter funktionshindrade kan känna igen sig.
Boken vänder sig till universitets- och högskolestuderande inom beteendevetenskap, vård, medicin och sociala områden samt yrkesverksamma som kommer i kontakt med människor med omfattande funktionshinder. Den kan med stor behållning också läsas av personer med funktionshinder och deras anhöriga.
Funktionshinder och välfärd
Szebehely, Marta m.fl
(2001)
Funktionshinder och välfärd. Betänkande, Kommittén Välfärdsbokslut.
Szebehely, M., Fritzell, J. & Lundberg, O.
(2001)
Funktionshinder, samtal och självbestämmande. En studie av brukarcentrerade möten
Karlsson, Kristina
(2007)
Doktorsavhandling
Syftet med avhandlingen är att ur ett medborgarskaps- och kommunikativt perspektiv undersöka och problematisera funktionshindrade "brukares" självbestämmande i samtal som förs under s.k. brukarcentrerade teammöten organiserade av en vuxen- respektive en barn- och ungdomshabilitering. I mötena deltar en funktionshindrad brukare och/eller anhöriga och professionella från skilda verksamheter. Studien baseras på diskursanalys av 18 observerade och bandinspelade möten hållna av tio olika team. Analyserna visar att brukarna hade ett mer eller mindre begränsat inflytande över samtalens organisering. Inflytandet varierade med organiseringen av samtalen samt med i vilken utsträckning brukarna deltog aktivt genom att identifiera egna problem och framtida mål. Det synliggjorde en spänning mellan ett "idealt" självbestämmande och brukarnas förmåga/benägenhet att leva upp till de krav som det "ideala" självbestämmandet ställde och gav upphov till situationer i vilka dilemman mellan självbestämmande och paternalism uppstod. I analyserna av hanterandet av dessa situationer framkom att deltagarna i möten utan deltagande brukare motiverade sina åsikter och beslut rörande behandlingen av brukaren genom att referera till egna övertygelser om vad som är bäst för brukaren respektive till tolkningar av brukarens egna preferenser utifrån hennes/hans agerande i vardagslivet. I möten med deltagande brukare använde övriga deltagare diskursiva strategier som var mer eller mindre paternalistiska då de innebar att de styrde brukaren på ett sätt som det inte var säkert att brukaren själv ville. I avhandlingen diskuteras vilka möjliga strategier som skulle kunna öka brukarnas självbestämmande. Utfallet relateras också till det "samtalande" och sociala medborgarskap som brukarna i avhandlingen anses utöva samt till andra möjliga innebörder av ett socialt medborgarskapsutövande.
Funktionshindrade 1988-1999
Statistiska centralbyrån, SCB
(2003)
Funktionsnedsättningar som medför någon form av begränsningar i tillvaron utgör funktionshinder. I denna rapport redovisas levnadsförhållanden för personer med olika typer av funktionsnedsättningar. Det gäller dels ett antal medicinska sjukdomar, dels några grupper som definierats just utifrån sina funktionsbegränsningar.Rapporten är indelad i två delar där den första behandlar levnadsförhållanden för personer i normalt yrkesverksam ålder, 25-64 år, och den senare förhållanden för personer i pensionsålder, 65-84 år. I ett inledande kapitel redovisas också hur vanligt förekommande olika kombinationer av funktionsnedsättningar är. I rapporten jämförs de funktionsnedsattas förhållanden i slutet av 90-talet med förhållandena tio år tidigare, dvs. före och i slutet av ett årtionde som kännetecknades av stora problem på arbetsmarknaden och besparingar i den offentliga sektorn.
Funktionshindrade 1988-1999
Statistiska centralbyrån, SCB
(2003)
Funktionsnedsättningar som medför någon form av begränsningar i tillvaron utgör funktionshinder. I denna rapport redovisas levnadsförhållanden för personer med olika typer av funktionsnedsättningar. Det gäller dels ett antal medicinska sjukdomar, dels några grupper som definierats just utifrån sina funktionsbegränsningar.Rapporten är indelad i två delar där den första behandlar levnadsförhållanden för personer i normalt yrkesverksam ålder, 25-64 år, och den senare förhållanden för personer i pensionsålder, 65-84 år. I ett inledande kapitel redovisas också hur vanligt förekommande olika kombinationer av funktionsnedsättningar är. I rapporten jämförs de funktionsnedsattas förhållanden i slutet av 90-talet med förhållandena tio år tidigare, dvs. före och i slutet av ett årtionde som kännetecknades av stora problem på arbetsmarknaden och besparingar i den offentliga sektorn.
Funktionshindrade i välfärdssamhället
Lindqvist, R.
(2012)
Funktionshindrade i välfärdssamhället handlar om funktionshindrades livsvillkor på några centrala områden: arbete och försörjning, vård, omsorg och utbildning, men också om funktionshindrades roll som samhällsmedborgare med anspråk på delaktighet och inflytande.
Bokens fokus ligger till stor del på välfärdssystemets möjligheter och begränsningar relaterade till funktionshindrades villkor. Men det finns naturligtvis en rad andra faktorer som också påverkar medborgarnas villkor som till exempel utvecklingen inom ekonomi och arbetsmarknad och inte minst de attityder och föreställningar vi har om vad det innebär att ha ett funktionshinder.
Den historiska framställningen visar på en utveckling från ett ensidigt individuellt handikappbegrepp, som betonar individens sjukdomar, skador och andra brister som konstituerande för handikappet, till ett mer relativt funktionshinderbegrepp som betonar omgivningens betydelse för om handikapp föreligger eller ej.
Boken vänder sig till studerande på universitet och högskolor, framför allt inom socialt arbete och vårdvetenskap.
Rafael Lindqvist är professor i sociologi, med inriktning funktionshinderforskning, Uppsala universitet.
Future Directions in Family and Professional Caregiving for the Elderly
Zarit, S. H. and A. M. Reamy
(2013)
As the population ages and the expected wave of baby boomers settles into old age, there is a pressing need to examine the people and institutions that care for elders and the ways in which the system will need to adapt during the next 5-10 years to accommodate the needs of the elderly and of their caregivers. This paper examines future directions in this field, identifying the major issues from two perspectives: family caregiving and professional caregiving. Despite extensive research on caregiving, more attention to a series of methodological issues is needed, as is more extensive evaluation of promising intervention models in community and institutional settings. Effective strategies to lower caregiver distress and improve the quality of care can be implemented in efficient ways that manage costs, but the argument for innovations must be made based on efficacy.
Fysisk svækkede ældres hjælp i hverdagen
Swane, C. & Hansen, E.
(2003)
Fånga stunden : Att vara anhörigvårdare till en person med demenssjukdom
Almberg, B., & Jansson, W.
(2003)
Får hundar korvar i himlen?
Sara Galli, Mats Molid
(2014)
Alva har en hund Musse. Musse är inte bara en hund, Alva ser Musse som en storebror också. När Alva får höra att Musse är gammal och inte kommer att leva länge till blir Alva både ledsen och arg, hon vill att han ska leva för alltid. Det är ju honom hon har som bästa vän och som hon berättar alla hemlisa för! Alva funderar över hur det ska gå till när Musse ska dö och vad händer med honom efteråt? Alva inser till slut att han inte försviner helt. Han finns ju kvar inom henne, lite i köket och kanske även i himlen.
För alltid i mitt hjärta
Bouw Rose Marie
(2017)
Kristina och Vivianne, två motpoler vars liv löper parallellt i Solgläntans korridorer när de hälsar på sina mödrar. Sida vid sida i demensens skugga söker de sig till varandra, i behov av ett outtalat stöd. Vivianne gömmer sin osynliga sorg bakom lager av glada färger och en väldigt lång halsduk. Fast besluten att alltid se det positiva i livet väljer hon att hålla fast i nuet och leva för stunden, tacksam för alla minnen hon får. Kristina försöker förtränga sitt förflutna, men hon är rädd för att glömma. Rädd att pärlhalsbandet av minnen ska gå sönder. Rädd att bli som sin mamma, som hon i hemlighet önskar livet ur. Men döden kommer aldrig i tid. Den kommer alltid för sent. Eller för tidigt. För alltid i mitt hjärta är en roman om en oväntad vänskap, som kommer att betyda så mycket mer än Kristina och Vivianne någonsin hade kunnat ana. En vänskap som kommer att sträcka sig genom både tid och rum.
För den jag är – om utbildning och utvecklingsstörning
SOU
(2003)
Carlbeck-kommittén har till uppgift att se över utbildningen för barn, ungdomar och vuxna med utvecklingsstörning. Delbetänkandet För den jag är om utbildning och utvecklingstörning (SOU: 2003: 35), är en beskrivning och kartläggning av hur utbildningen för barn, ungdomar och vuxna ser ut i dag.
Kommitténs uppgift är att hitta vägar att stärka utbildningen för barn, ungdomar och vuxna med utvecklingstörning med det övergripande målet att åstadkomma en inkluderande skola och en inkluderande undervisning.
för äldre och deras närstående : Delrapport december 2001.
Lidskog, R., Holm, K., Hanson, E., Magnusson, L. & Andersson, B.
(2001)
Förebygg för barnens skull. Om SBU:s utvärdering av program mot psykisk ohälsa hos barn.
Fagerström, Åsa
(2011)
Skriften bygger på rapporten "Program för att förebygga psykiatrisk ohälsa hos barn – en systematisk litteraturöversikt, utgiven 2010 av SBU.
Förebyggande hembesök till äldre: en modell för det hälsofrämjande arbetet
Stiftelsen Stockholms läns äldrecentrum
(2007)
Inequalities in quality of life among older people from different ethnic groups
Butt, J. and J. Moriarty
(2004)
Influencing support for caregivers
Raphael, C. & Cornwell, J. L.
(2008)
Informal and formal care among single-living elderly in Europe
Bolin, K., Lindberg, B., Lundborg, P.
(2008)
Informal and formal home-care use among older adults in Europe: Can cross-national differences be explained by societal context and composition?
Suanet, B.
(2012)
Cross-national comparisons employed welfare state classifications to explain differences in care use in the European older population. Yet these classifications do not cover all care-related societal characteristics and limit our understanding of which specific societal characteristics are most important. Using the Survey of Health, Ageing and Retirement (second wave, 2006–07), the effect of societal determinants relating to culture, welfare state context and socio-economic and demographic composition on informal and formal care use of older adults in 11 European countries was studied. Multinomial multi-level regression analyses showed that, in addition to individual determinants, societal determinants are salient for understanding care use. In countries with fewer home-based services, less residential care, more informal care support and women working full time, older adults are more likely to receive informal care only. Older adults are more likely to receive only formal home care or a combination of formal and informal care in countries with more extensive welfare state arrangements (i.e. more home-based services, higher pension generosity), whereas the odds of receiving a combination of informal and formal care are also larger in countries that specify a legal obligation to care for parents. We tentatively conclude that the incorporation of societal determinants rather than commonly used welfare state classifications results in more understanding of the societal conditions that determine older adults' care use.
Informal care and support for carers in Sweden: Patterns of service receipt among informal caregivers and care recipients
Jegermalm, M.
(2004)
Informal care can be better than adequate: Development and evaluation of the Exemplary Care Scale
Dooley, W. K., Shaffer, D. R., Lance, C. E. & Williamson, G. M.
(2007)
Informal care for the elderly. Preliminary background report for Norway, prepared for EUROFAMCARE
Ingebretsen, R. and J. Eriksen
(2004)
Informal care for the elderly. Preliminary background report for Norway, prepared for EUROFAMCARE
Ingebretsen, R. and J. Eriksen
(2004)
Informal care for the elderly. Preliminary background report for Norway, prepared for EUROFAMCARE
Ingebretsen, R., Eriksen, J.
(2004)
Informal care for the elderly. Preliminary background report for Norway, prepared for EUROFAMCARE
Ingebretsen R, Eriksen J.
(2004)
Informell omsorg, socialt kapital och tillit. In Det civila samhället som forskningsfält : Nya avhandlingar i ett nytt sekel (Vol. 63-74).
Forssell, E.
(2006)
Informell äldreomsorg samt stöd till informella vårdare - en nordisk forskningsöversikt
Sand, A.-B.
(2005)
Äldreomsorgsforskning i Norden. En kunskapsöversikt. TemaNord 2005:508. M. Szebehely
Informella hjälpgivare
Szebehely, M.
(2006)
Informing children of their parent's illness: A systematic review of intervention programs with child outcomes in all health care settings globally from inception to 2019
Charlotte Oja, Tobias Edbom, Anna Nager, Jörgen Månsson, Solvig Ekblad
(2020)
Abstract
Introduction: Children are impacted when parents are ill. This systematic review gives an overview of the current state of research and extracts what children and parents found helpful in the interventions aimed at informing children of their parent's illness.
Methods: This review was registered with PROSPERO and conducted in accordance with PRISMA guidelines. Five health and social science databases were searched from inception to November 2019 to identify original, peer-reviewed articles in English describing effective interventions. The authors selected and reviewed the studies independently, and any inconsistencies were resolved by discussion in face-to-face meetings and emails. A descriptive synthesis of evidence-based concepts from quantitative and qualitative studies was conducted.
Results: A total of 13 892 titles and 144 full-text articles were reviewed with 32 selected for final inclusion, 21 quantitative, 11 qualitative and no mixed-method studies published from 1993 to November 2019. Most of the research was conducted in mental health, including substance abuse (n = 22), but also in cancer care (n = 6) and HIV care (n = 4). Most studies using quantitative method showed a small to moderately positive statistically significant intervention effect on the child's level of internalized symptoms. Content analysis of the results of studies employing qualitative methodology resulted in four concepts important to both children and parents in interventions (increased knowledge, more open communication, new coping strategies and changed feelings) and three additional concepts important to parents (observed changes in their children's behavior, the parent's increased understanding of their own child and the relief of respite).
Conclusions: In the literature there is evidence of mild to moderate positive effects on the child's level of internalized symptoms as well as concepts important to children and parent's worth noting when trying to bridge the still existing knowledge gaps. In further efforts the challenges of implementation as well as adaptation to differing clinical and personal situations appear key to address.
Infoteket om funktionshinder
LUL
(2012)
Infoteket om funktionshinder är till för dig som har en funktionsnedsättning, är anhörig eller arbetar med barn, ungdomar eller vuxna med funktionsnedsättningar i skola eller annan verksamhet.
På Infoteket kan du läsa och låna aktuell litteratur, filmer, söka information på webben, tala med experter och lyssna på föreläsningar. Här finns lästips och faktablad inom olika diagnoser och funktionsnedsättningar att hämta.
Gamla Uppsala : Skräddarsytt stöd för demenssjuka och anhöriga : Demensvårdens olika sidor
Lanesjö, E.
(2001)
Gamlas olycka är barnens fel : vi vuxna måste ta hand om våra gamla föräldrar och sluta lägga ansvaret på staten
Schulman, C.
(2008)
Gauging quality in constructivist research - the ÄldreVäst Sjuhärad model revisited.
Nolan, M., Hanson, E., & Magnusson, L.
(2003)
Ge mig en tanke - som jag kan koncentrera mig på : en bok till schizofrena och neurotiker och till deras anhöriga och deras läkare
Bendix, T. and T. Moestrup
(1990)
Gemensam planering – på den enskildes villkor
Stenhammar, Ann-Marie & Flyckt, Karin
(2007)
Socialstyrelsen har på regeringens uppdrag tillsammans med Skolverket och Specialpedagogiska institutet analyserat förutsättningarna för att samordna de individuella planer som ett barn, en ungdom och en vuxen person med funktionshinder kan ha. Med funktionshinder menas det komplexa sambandet mellan förekomst av en sjukdom, skada eller liknande och begränsad aktivitet och delaktighet. Särskild uppmärksamhet har ägnats åt vad som behöver förändras i regelverken.
Den huvudsakliga frågeställningen har varit vad som hindrar och stödjer gemensam individuell planering i regelverk, hos organisationer och hos aktörer (det senare avser personalen som är anställd i de berörda verksamheterna). Ytterligare en frågeställning har varit om gemensam planering kan innebära några negativa konsekvenser för den enskilde.
Förutsättningarna för samordnad och gemensam planering har analyserats på tre nivåer: individnivå, organisationsnivå och nationell nivå. Kunskapen om de två förstnämnda nivåerna bygger på skriftlig och muntlig information från brukarföreträdare, personal, verksamhetsansvariga och myndighetsföreträdare i Sverige och i Norge. På den tredje nivån, som berör rapportens huvudresultat, har kunskap inhämtats genom granskning av de bestämmelser om individuella planer som finns i lagar, förordningar eller i för sammanhanget relevanta förarbeten och myndighetsföreskrifter. Ett antal analysfaktorer har använts som stöd för granskningen. De lagstiftningsområden som valts ut för granskning är socialtjänst, hälso- och sjukvård och skollagsreglerade verksamheter samt integration, socialförsäkring och arbetsmarknad. Förutsättningarna för gemensam planering har analyserats utifrån sambandet mellan de tre nivåerna. Rapportens bilaga visar en översikt av bristande överensstämmelser mellan de berörda regelverken.
Gemensamt hushåll : Svenska kyrkans roll i den sociala ekonomin (Mitt i församlingen; 2002:1).
Svenska kyrkan
(2002)
Gender and the caring dimension of welfare states
Knijn, T. and M. Kremer
(1997)
Gender and the caring dimension of welfare states: toward inclusive citizenship.
Knijn T, Kremer M.
(1997)
Gender and the social rights of citizenship: state policies and gender relations in comparative perspective.
Orloff, A.
(1993)
Gender differences when parenting children with autism spectrum disorders: A multilevel modeling approach
Jones L, Totsika V, Hastings RP, Petalas MA.
(2013)
Parenting a child with autism may differentially affect mothers and fathers. Existing studies of mother–father differences often ignore the interdependence of data within families. We investigated gender differences within-families using multilevel linear modeling. Mothers and fathers of children with autism (161 couples) reported on their own well-being, and their child's functioning. Mothers reported higher levels of distress compared with fathers, and child behavior problems predicted psychological distress for both mothers and fathers. We found little evidence of child functioning variables affecting mothers and fathers differently. Gender differences in the impact of child autism on parents appear to be robust. More family systems research is required to fully understand these gender differences and the implications for family support. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)
Gender perspective on informal care for elderly people one year after acute stroke
Gosman-Hedström, G. and L. Claesson
(2005)
BACKGROUND AND AIMS: The aim of the one-year follow-up was to evaluate formal care and the situation of informal caregivers from a gender perspective. METHODS: The present study targeted elderly persons (n = 147) living in their own homes 12 months after acute stroke, 94 women and 53 men. The median age of the women was 81 years and the men 80 years. RESULTS: A statistically significant gender difference was seen in living conditions. Eighty percent of the women were living alone compared with 28% of the men (CI 48-56%). The informal care given far exceeded that provided by the community: 65% of these elderly people had some kind of informal care and 44% received formal care from the community. There was a gender difference in daily informal personal care, 24% of men and 16% of women (CI 2-18%), and in daily informal household assistance (CI 15-43%). Formal care was provided by the community significantly more frequently to women (56%) than men (23%) (CI 21-45%). The women more frequently had community-based help with house-cleaning (CI 23-39%) and they also more frequently received help with personal care (CI 1-10%). CONCLUSIONS: This study showed statistically significant gender differences in the use of informal and formal care. Elderly caregivers' situations must be given greater attention, since informal care to stroke survivors represents a far greater burden than the care that is provided by the community. Most of the caregivers were elderly women, and preventive intervention measures should be developed in order to enable them to manage their everyday lives.
Gender perspective on informal care for elderly people one year after acute stroke
Gosman-Hedström, G., & Claesson, L.
(2005)
Gender roles and social policy in an ageing society: The case of Japan
Makita M
(2010)
This article reviews the major underpinnings of the Japanese welfare state in the context of social care from a feminist perspective. In Japan, family-care responsibilities have traditionally been assigned to women; hence, care has long been a women's issue. However, as the social contract of a male breadwinner and a "professional housewife" gradually fades out, Japanese women find more opportunities to renegotiate their caring roles. Of course, this social transformation did not occur in isolation, it was influenced by patterns in economic development, state policies and mainly demographic changes. All this has stimulated new state responses in the form of social welfare expansion that arguably aim to relieve women of the burdens of family-care. The issue remains, however, as to whether Japan would be able to recognise that the main structural issues of population ageing do not originate from demographic changes, but from a strict gendered division of labour and gender inequality.