Roger Zetterström, bokens författare, är skötare i psykiatri och socionom, han arbetar som personligt ombud för vuxna med långvarig psykisk ohälsa.
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Play and expressive therapies to help bereaved children: individual, family and group treatment
Different types of expressive therapies permit bereaved children to express and process their feelings through a variety of child‐friendly non‐verbal methods such as art, creative writing, and music. The selection of a particular method depends on considerations related to the particular needs of each child, the circumstances of the death, and the family/community narrative about it. This article demonstrates how expressive therapies may be used in individual, family, or group sessions which, through play and other modes of expression, provide children with an opportunity to communicate feelings about and reactions to their bereavement experiences in symbolic form.
Practitioner Review: Computerized assessment of neuropsychological function in children: clinical and research applications of the Cambridge Neuropsychological Testing Automated Battery (CANTAB)
BACKGROUND:
Computers have been used for a number of years in neuropsychological assessment to facilitate the scoring, interpretation, and administration of a variety of commonly used tests. There has been recent interest in applying computerized technology to pediatric neuropsychological assessment, which poses unique demands based on the need to interpret performance relative to the child's developmental level.
FINDINGS:
However, pediatric neuropsychologists have tended to implement computers in the scoring, but not administration, of tests. This trend is changing based on the work of experimental neuropsychologists who frequently combine data obtained from test batteries with lesion or neuroimaging data allowing descriptions of brain-behavior relations to be made with increasing confidence. One such battery is the Cambridge Neuropsychological Testing Automated Battery (CANTAB), and current studies in which the CANTAB has been used to measure executive functions in children are reviewed.
CONCLUSIONS:
Computerized batteries of this type can record aspects of performance that are difficult for psychometrists to achieve, and these may reflect activity in developing neural networks with more sensitivity than can be achieved with traditional tests. However, before computerized test administration becomes a routine part of pediatric neuropsychological assessment, several obstacles must be overcome. Despite these limitations, it is concluded that computerized assessment can improve the field by facilitating the collection of normative and clinical data.
Psychopathology and Substance Abuse in Parents of Young Children With Attention-Deficit/Hyperactivity Disorder
OBJECTIVE:
To compare the prevalence of psychological disorders in parents of young children with and without attention-deficit/hyperactivity disorder (ADHD) and comorbid disruptive behavior disorders (DBD).
METHOD:
Subjects included 98 three- to seven-year-old children with DSM-IV ADHD (68 with ADHD and comorbid oppositional defiant or conduct disorder [ADHD+ODD/CD]) and 116 non-ADHD comparison children recruited in 1995-96 during the first wave of a longitudinal study. Biological mothers were administered interviews to assess ADHD and DBD in their children and mood, anxiety, and substance use disorders in themselves. In addition, they were queried about symptoms of childhood ADHD and DBD, and antisocial personality disorder in themselves and their children's biological fathers.
RESULTS:
Child ADHD was associated with increased rates of maternal and paternal childhood ADHD relative to comparison children. Child ADHD+ODD/CD was associated with maternal mood disorders, anxiety disorders, and stimulant/cocaine dependence, and paternal childhood DBD. Mothers of children with ADHD+ODD/CD also reported increased drinking problems in their children's fathers.
CONCLUSIONS:
These findings indicate that many young children with ADHD, particularly those with comorbid ODD/CD, require comprehensive services to address both their ADHD and the mental health needs of their parents.
Psychopathology and Substance Abuse in Parents of Young Children With Attention-Deficit/Hyperactivity Disorder
OBJECTIVE:
To compare the prevalence of psychological disorders in parents of young children with and without attention-deficit/hyperactivity disorder (ADHD) and comorbid disruptive behavior disorders (DBD).
METHOD:
Subjects included 98 three- to seven-year-old children with DSM-IV ADHD (68 with ADHD and comorbid oppositional defiant or conduct disorder [ADHD+ODD/CD]) and 116 non-ADHD comparison children recruited in 1995-96 during the first wave of a longitudinal study. Biological mothers were administered interviews to assess ADHD and DBD in their children and mood, anxiety, and substance use disorders in themselves. In addition, they were queried about symptoms of childhood ADHD and DBD, and antisocial personality disorder in themselves and their children's biological fathers.
RESULTS:
Child ADHD was associated with increased rates of maternal and paternal childhood ADHD relative to comparison children. Child ADHD+ODD/CD was associated with maternal mood disorders, anxiety disorders, and stimulant/cocaine dependence, and paternal childhood DBD. Mothers of children with ADHD+ODD/CD also reported increased drinking problems in their children's fathers.
CONCLUSIONS:
These findings indicate that many young children with ADHD, particularly those with comorbid ODD/CD, require comprehensive services to address both their ADHD and the mental health needs of their parents.
På väg mot en god demensvård. Samhällets insatser för personer med demenssjukdomar och deras anhöriga. Departementspromemorian. Ds 2003:47
Relatives are a resource, but … registered nurses views and experiences of relatives of residents in nursing homes
Samhörighet och plikt : Om anhörigvårdare med icke-svensk bakgrund (Rapport / FoU i Väst, 2003:4).
Samtal i självhjälpsgrupp – få kraft och stöd av andra i samma situation.
Känslan av total isolering i en krissituation kan ibland vara lika förödande som själva orsaken till krisen. Den som själv är drabbad eller har varit i samma situation kan bättre förstå hur det känns- det är grundtanken bakom fenomenet självhjälpsgrupper.
Journalisten Charlotte Essén har i sin bok samlat en mängd fakta kring självhjälpsgrupper: varför de behövs, hur de har utvecklats, hur de fungerar etc. Hon har även sammanställt en utförlig lista- den första i sitt slag- över alla de grupper som finns i Sverige idag, sorterade under ämnesrubriker, vilket gör boken till en användbar handbok för den som söker hjälp eller vill starta en ny grupp.
Samverkan kring föräldrar med utvecklingsstörning eller andra intellektuella begränsningar. Kartläggning av stödbehov som grund för metodutveckling och uppbyggnad av kunskapscentrum
Social care in Finland: Stronger and Weaker Forms of Universalism.
Social cognitive theory and exercise of control over HIV infection
Socio-Communicative Variables and Behavior States in Students with Profound and Multiple Disabilities: Descriptive Data from School Settings
Assessment of student behavior states and contextual variables has emerged as a promising area for research and practice in the education of individuals with profound and multiple disabilities. This paper presents findings of an observational study of ten school-aged students in this population, with particular attention being paid to social and communicative variables operating in educational settings. Comparisons are made with other published studies of behavior state assessment and socio-communicative processes observed in special education programs. Implications of these findings are discussed in relation to extant literature and avenues for further investigation in this field. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
State provision down, offspring’s up: the reverse substitution of old-age care in Sweden.
State provision down, offspring's up: The reverse substitution of old-age care in Sweden
Subjective burden over 12 months in parents of patients with schizophrenia. Archives of Psychiatric Nursing, XVII
Support for carers of older people: The roles of the public and voluntary sectors in Sweden.
Support for carers of older people: The roles of the public and voluntary sectors in Sweden.
Supporting carers of people diagnosed with schizophrenia: evaluating change in nursing practice following training
BACKGROUND:
United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.
STUDY AIM:
To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.
DESIGN/METHODS:
The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.
FINDINGS:
Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.
CONCLUSIONS:
Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.
Telephone Group Intervention for Older Stroke Caregivers
Purpose: This study evaluated the effectiveness of telephone groups for older, spousal caregivers of stroke survivors. Method: The 88 caregivers were mostly white females who were 70 years old on average and who had been providing care for an average of 3 years. Participants were randomized to treatment or control conditions, followed for 6 months, and assessed for depression, burden, loneliness, stress, and competence. Treatment participants engaged in an eight-session psychoeducational telephone group. Results: Treatment participants showed decreased stress over time but were not significantly different from control participants in the amount of change in stress. Control participants showed a significant increase in burden during the study; treatment participants showed a significant increase in competence.
The cope index - a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people.
The Family Bereavement Program: efficacy evaluation of a theory-based prevention program for parentally bereaved children and adolescents
This article presents an experimental evaluation of the Family Bereavement Program (FBP), a 2-component group intervention for parentally bereaved children ages 8-16. The program involved separate groups for caregivers, adolescents, and children, which were designed to change potentially modifiable risk and protective factors for bereaved children. The evaluation involved random assignment of 156 families (244 children and adolescents) to the FBP or a self-study condition. Families participated in assessments at pretest, posttest, and 11-month follow-up. Results indicated that the FBP led to improved parenting, coping, and caregiver mental health and to reductions in stressful events at posttest. At follow-up, the FBP led to reduced internalizing and externalizing problems, but only for girls and those who had higher problem scores at baseline.
the noncompliant child: Family-based treatment for oppositional behaviour
The psychosocial functioning of children and spouses of adults with ADHD
BACKGROUND:
It is unclear what the impact of parental ADHD is on the day-to-day life of the rest of the family and how it contributes to the intergenerational transmission of this disorder.
METHOD:
The psychosocial functioning of 23 spouses and 63 children of 33 families with an ADHD parent and 20 spouses and 40 children of 26 comparison families was examined. Both adults and their spouses were assessed for lifetime and current Axis I and Axis II diagnoses, present general psychiatric symptoms and their marital relationships. Children were screened for ADHD and other problems, using the C-DISC, CBLC, TRF and the Social Adjustment Inventory.
RESULTS:
Children with an ADHD parent had higher rates of psychopathology than those from comparison families. Children with ADHD had more co-morbidities than non-ADHD children. Family and marital functions were impaired in ADHD families regardless of the gender of the affected parent. Children without ADHD from families with one psychiatrically healthy parent did well while the behaviour of children with ADHD was always poor and not associated with parental mental health.
CONCLUSION:
The results underscore the strong genetic contribution to ADHD and the need to carefully assess the non-ADHD parent as they seem to influence the well-being of non-ADHD children in families with an ADHD parent.
The role of social support in well-being and coping with self-reported stressful events in adolescents
Objective: This study investigated the role that social support plays in well-being and in coping after a stressful event in a group of non-clinical adolescents. Furthermore, this study aimed at replicating the finding that adolescents who reported sexual abuse reported more symptoms and less adequate coping strategies than adolescents who reported another type of stressful event or no stressful episode.
Method: Eight hundred and twenty adolescents between 12 and 18 years of age filled out questionnaires assessing social support (Social Support Questionnaire, Sarason, Shearin, Pierce, & Sarason, 1987), trauma-related symptoms (Trauma Symptom Checklist for Children, Briere, 1996), behavior problems (Youth Self-Report, Achenbach, 1991), and coping (How I Cope Under Pressure Scale, Ayers, Sandler, West, & Roosa, 1996).
Results: 42% of the adolescents reported a stressful experience, and 4.4% reported sexual abuse. Sexually abused adolescents reported more stress-related symptoms and used more avoidance and fewer support-seeking coping strategies than the other adolescents. The main-effect hypothesis of social support was sustained, but social support did not moderate the relation between a stressful event and coping. Yet, a trend was found suggesting that high support from the family was associated with less avoidance coping and more support-seeking in adolescents who reported a non-sexually abusive, stressful event.
Conclusions: Our findings show that a highly perceived availability of social support is directly associated with fewer trauma-related symptoms, especially in adolescents who are non-sexually abused. For adolescents who reported a sexual or another type of stressful event, social support did not play a different role in coping.
The Shifting Balance of Long-Term Care in Sweden
Abstract
PURPOSE:
This study describes the Swedish debate on the role of family and state in care of elderly persons. It provides empirical evidence on the shifting balance of family, state, and market in the total panorama of elderly care.
DESIGN AND METHODS:
Secondary analysis of older (1954) and more recent data sources (1994 and 2000) is used to assess living arrangements and care patterns for persons 75 years or older living in the community.
RESULTS:
Total spending on aged adults has stagnated, and institutional care is shrinking in absolute and relative terms, but public Home Help for elders in the community is decreasing even more. Family members increasingly shoulder the bulk of care, but privately purchased care also seems to expand. This study calculates how public and informal care changed between 1994 and 2000: Informal care is estimated to have provided 60% of all care to elders in the community in 1994 and 70% in 2000.
The Timeline Followback Spousal Violence Interview to Assess Physical Aggression Between Intimate Partners: Reliability and Validity
The psychometric properties of the Timeline Followback Spousal Violence interview (TLFB-SV), a calendar method used to assess daily patterns and frequency of spousal violence, were evaluated. Men (N = 104) entering a spousal violence treatment program, along with their female partners, were interviewed with the TLFB-SV at pretreatment, posttreatment, and quarterly thereafter for 1 year and asked to identify days of male-to-female and female-to-male physical aggression that had occurred between them. For posttreatment and follow-up interviews, participants maintained a weekly diary, in which they catalogued the days on which acts of spousal violence occurred. The subscale scores derived from the TLFB-SV, the proportion of days of any violence, and proportion of days of severe violence for each partner were calculated for each assessment interval. The TLFB-SV subscales had excellent temporal stability and concurrent and discriminant validity. Interpartner agreement on TLFB-SV subscale scores and agreement between partners on days when spousal violence occurred was low at pretreatment, but was high for the other assessment periods.
The use of information technology in home healthcare : Requirements and application development (Linköping studies in science and technology. Diss. 1066).
The population's wish to receive care in the own home instead of at a hospital fits well with the Health Services' development in the direction of increasing home healthcare even when severe illness is involved. However, when care is moved from the hospital to the home the demands for high quality care still remain. Information and telecommunication technologies used in applications which are tailored to support caregivers and patients in home healthcare, can be part of the facilitation of this development towards an increasing home healthcare service. Remote monitoring of the patient in the home can support assuring this quality of care but such monitoring involves considering several requirement areas.This thesis describes problem areas in both basic and advanced home healthcare where information technology can be a part of the solution. Further, the thesis describes requirement areas to be considered when monitoring patients in the home, both in regard to subjective and objective variables. The requirement areas, which are described in the thesis, include security, mobility, and responsibility. Network solutions for home healthcare are discussed and two information technology applications in home healthcare are described. The first application concerns diabetes care and the second application concerns the use of digital pen technology for symptom assessments in advanced palliative home healthcare.
Varieties of familialism
Verksamhetsberättelse för Kris- och Samtalsteamet, År 2003
What imitation tells us about social cognition: a rapprochement between developmental psychology and cognitive neuroscience
Both developmental and neurophysiological research suggest a common coding between perceived and generated actions. This shared representational network is innately wired in humans. We review psychological evidence concerning the imitative behaviour of newborn human infants. We suggest that the mechanisms involved in infant imitation provide the foundation for understanding that others are 'like me' and underlie the development of theory of mind and empathy for others. We also analyse functional neuroimaging studies that explore the neurophysiological substrate of imitation in adults. We marshal evidence that imitation recruits not only shared neural representations between the self and the other but also cortical regions in the parietal cortex that are crucial for distinguishing between the perspective of self and other. Imitation is doubly revealing: it is used by infants to learn about adults, and by scientists to understand the organization and functioning of the brain.
Vilken information behöver anhörigvårdare till dementa?
Vulnerability of family caregivers in terminal palliative care at home, balancing between burden
Vulnerability of family caregivers in terminal palliative care at home, balancing between burden
Vård av självmordsnära patienter – en kunskapsöversikt
Vård av självmordsnära patienter – en kunskapsöversikt
Äldrepolitik för framtiden : 100 steg till trygghet och utveckling med en åldrande befolkning : Slutbetänkande.
Ett år efter Anhörig 300 - Uppföljning av kommunernas arbete med utveckling av anhörigstöd år 2002. Lägesbeskrivning
Evaluation of a stroke family support organiser: a randomized controlled trial.
Background and Purpose— There is inconclusive evidence of the effectiveness of the Stroke Family Support Organiser (FSO) service. We report the results from a randomized controlled trial of the service.
Methods— Stroke patients admitted to hospital and their informal caregivers were randomly allocated to receive the FSO service (n=126) or standard care (n=124). Outcome assessments were undertaken 4 and 9 months after recruitment with the General Health Questionnaire 12, Carer Strain Index, Barthel Index, Extended Activities of Daily Living scale, and a specially designed questionnaire to determine knowledge of stroke and satisfaction with services.
Results— There were no significant differences between groups in patients' mood and independence in personal or instrumental activities of daily living or caregivers' mood, strain, or independence. Patients in the intervention group were significantly more knowledgeable about whom to contact for stroke information, reducing the risk of stroke, practical help, community services, and emotional support. Patients in the intervention group were also significantly more satisfied with the stroke information received. Caregivers in the intervention group were significantly more knowledgeable about whom to contact for information on stroke, reducing the risk of stroke, community services, and emotional support. Caregivers in the intervention group were also significantly more satisfied with stroke information.
Conclusions— The FSO service had no significant effect on mood, independence in activities of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge. The results may not be representative of all FSO services, and the sample was small relative to the heterogeneity of the participants. However, results suggest that the policies and training procedures of FSOs need to be evaluated to ensure that a cost-effective service is being provided to stroke patients and their caregivers.
Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature
Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.
Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature
Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.
Family-Based Interventions for Substance Use and Misuse Prevention
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.
Fri eller förankrad? :En empirisk studie av volontärverksamhet och ideella insatser inom stiftelsen stora Sköndal (Sköndalsinstitutets arbetsrapportserie, 1402-277x ; 30).
Funktionshindrade 1988-1999
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
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.
Less is more: meta-analyses of sensitivity and attachment interventions in early childhood
Is early preventive intervention effective in enhancing parental sensitivity and infant attachment security, and if so, what type of intervention is most successful? Seventy studies were traced, producing 88 intervention effects on sensitivity (n = 7,636) and/or attachment (n = 1,503). Randomized interventions appeared rather effective in changing insensitive parenting (d = 0.33) and infant attachment insecurity (d = 0.20). The most effective interventions used a moderate number of sessions and a clear-cut behavioral focus in families with, as well as without, multiple problems. Interventions that were more effective in enhancing parental sensitivity were also more effective in enhancing attachment security, which supports the notion of a causal role of sensitivity in shaping attachment.
'Lost solidarity' or 'changed solidarity': A comparative european view of normative family solidarity.
Manual for the ASEBA Adult Forms and Profiles
Manual for the ASEBA Adult Forms and Profiles
Manual explains the development, standardization, applications, and profiles for the ASEBA adult forms. Also provides reliability and validity data, problem prevalence rates, scale scores, scoring instruments, and answers to common questions. 232 pages.
Mortality in parents after the death of a child in Denmark: a nationwide follow-up study
Abstract
BACKGROUND:
Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents.
METHODS:
We undertook a follow-up study based on national registers. From 1980 to 1996, we enrolled 21062 parents in Denmark who had a child who had died (exposed cohort), and 293745 controls--ie, parents whose children were alive, and whose family structure matched that of the exposed cohort. Natural deaths were defined with ICD8 codes 0000-7969 and ICD10 codes A00-R99, and unnatural deaths with codes 8000-9999 and V01-Y98. We used Cox's proportional-hazards regression models to assess the mortality rate of parents up to 18 years after bereavement.
FINDINGS:
We observed an increased overall mortality rate in mothers whose child had died (hazards ratio 1.43, 95% CI 1.24-1.64; p<0.0001). An excess mortality from natural causes (1.44, 1.15-1.78; p<0.0001) was noted in mothers only during the 10th-18th year of follow-up. Mothers had increased mortality rates from unnatural causes throughout follow-up, with the highest rate recorded during the first 3 years (3.84, 2.48-5.88; p<0.0001). Bereaved fathers had only an early excess mortality from unnatural causes (1.57, 1.06-2.32; p=0.04). Mothers who lost a child due to an unnatural death or an unexpected death had a hazard ratio of 1.72 (1.38-2.15; p=0.0040) and 1.67 (1.37-2.03; p=0.0037), respectively.
INTERPRETATION:
The death of a child is associated with an overall increased mortality from both natural and unnatural causes in mothers, and an early increased mortality from unnatural causes in fathers.
Mortality, severe morbidity an injury in children living with single parents in Sweden: a population-based study
Abstract
BACKGROUND:
Growing up with one parent has become increasingly common, and seems to entail disadvantages in terms of socioeconomic circumstances and health. We aimed to investigate differences in mortality, severe morbidity, and injury between children living in households with one adult and those living in households with two adults.
METHODS:
In this population-based study, we assessed overall and cause-specific mortality between 1991 and 1998 and risk of admission between 1991 and 1999 for 65085 children with single parents and 921257 children with two parents. We estimated relative risks by Poisson regression, adjusted for factors that might be presumed to select people into single parenthood, and for other factors, mainly resulting from single parenthood, that might have affected the relation between type of parenting and risk.
FINDINGS:
Children with single parents showed increased risks of psychiatric disease, suicide or suicide attempt, injury, and addiction. After adjustment for confounding factors, such as socioeconomic status and parents' addiction or mental disease, children in single-parent households had increased risks compared with those in two-parent households for psychiatric disease in childhood (relative risk for girls 2.1 [95% CI 1.9-2.3] and boys 2.5 [2.3-2.8]), suicide attempt (girls 2.0 [1.9-2.2], boys 2.3 [2.1-2.6]), alcohol-related disease (girls 2.4 [2.2-2.7], boys 2.2 [2.0-2.4]), and narcotics-related disease (girls 3.2 [2.7-3.7], boys 4.0 [3.5-4.5]). Boys in single-parent families were more likely to develop psychiatric disease and narcotics-related disease than were girls, and they also had a raised risk of all-cause mortality.
CONCLUSIONS:
Growing up in a single-parent family has disadvantages to the health of the child. Lack of household resources plays a major part in increased risks. However, even when a wide range of demographic and socioeconomic circumstances are included in multivariate models, children of single parents still have increased risks of mortality, severe morbidity, and injury.
Outcome studies of family therapy in child and adolescent depression
There is surprisingly little good-quality evidence for the effectiveness of family systemic interventions with child and adolescent depression given the prevalence of depression and the demonstrated association with a range of family factors. What studies there are suggest the possibility of family therapy being an effective intervention but more research is needed before firm conclusions may be drawn. Family interventions may be more effective in children than in adolescents and where other family members are depressed. It is possible that family interventions continue to bring about improvement in symptoms after cessation of treatment. What research there is evaluates older structural models of therapy: there is a real need for more evaluation of newer models of practice.
Overview of fetal alcohol spectrum disorders for mental health professionals
Fetal Alcohol Spectrum Disorders (FASD), including Fetal Alcohol Syndrome (FAS) and related disorders such as Alcohol Related Neurodevelopmental Disorder (ARND) are the most common form of developmental disability and birth defects in the western world. Early recognition and accurate diagnosis by mental health professionals remains a key issue. This article reviews history, mechanisms of alcohol exposure, epidemiology, diagnosis and management of FASD.
Parent and adolescent responses to non-terminal parental cancer: retrospective multi-case pilot study
This article presents the results of a retrospective multiple-case pilot study (6 families: 4 Caucasian and 2 African American) designed to uncover how parents and their adolescent children (ages 11-18) were affected by non-terminal parental cancer, and how they adjusted to and coped with cancer. Drawing from phenomenology and the collective case study approach, findings suggest that parents were often unaware of the stress and overwhelming feelings of sadness and fear their adolescent children were experiencing. Often the adolescent children tried to protect their parents by not sharing their feelings openly with them; this was particularly so for the oldest offspring in the family. These findings provide important insights for healthcare professionals in serving this often-neglected population of families more effectively.
Parenting of children with Attention-Deficit/Hyperactivity Disorder (ADHD): The role of parental ADHD symptomatology
OBJECTIVE:
The present study examined the relation between parental ADHD symptomatology and parent-child behavior among 46 mothers and 26 fathers of ADHD children.
RESULTS:
Fathers' self-reports of inattention and impulsivity were strongly associated with self-reports of lax parenting both before and after parent training, and with self-reports of overreactivity after parent training. Fathers' impulsivity was also associated with more arguing during audiotaped observations of parent-child interactions prior to parent training. Mothers' self-reports of inattention were modestly associated with self-reports of laxness before and after parent training. Prior to parent training, there were non-linear relations between mothers' inattention and observations of mother-child behavior, with mothers who reported moderate levels of inattention engaging in the most negative parent-child interactions. After parent training, these relations were linear, with the mothers who reported the most inattention engaging in the most negative parent-child interactions. These results were weakened but were generally still significant when parental depression and alcohol use were controlled.
Partnerships in family care : [understanding the caregiving career].
Patterns of interaction between children with physical disabilities using augmentative and alternative communication systems and their peers
Developing peer relationships in school is an essential part of growing up. Many children who have little or no functional speech are provided with augmentative and alternative communication (AAC) systems such as speech synthesizers and books and charts of symbols/pictures/words. Such children face many barriers to communication and to developing peer relationships. To date there exists little understanding of the characteristics of interaction between children using AAC and their speaking peers. This paper reports findings from an analysis of interactions between 12 children with physical disabilities using AAC systems and their speaking peers in school. Analysis identifies the primary structures, functions, and modes of communication used by both partners in one-to-one conversation.
Rättigheter & möjligheter – en guide till samhällsstöd för barn och ungdomar med funktionshinder och deras familjer
Tid för vardagsliv. Kvinnors och mäns tidsanvändning 1990/91 och 2000/01.
Tillgång till habilitering och rehabilitering för barn och ungdomar med funktionshinder. Uppföljning och utvärdering, 2003-103-2.
Socialstyrelsen har haft regeringens uppdrag att kartl‰gga p vilket s‰ttlandstingens barn- och ungdomshabilitering ‰r tillg‰nglig fˆr barn och ung-domar i olika Âldrar med olika funktionshinder. Fˆr att skapa underlag fˆrarbetet har enk‰ter riktats till landstingen och till barn/ungdomar med fa-miljer som under fˆrsta halvÂret 2002 hade habiliteringsinsatser. En kvalita-tiv studie som omfattar tio familjer har ocks gjorts. Markˆr AB, ÷rebro haransvarat fˆr insamlingen och sammanst‰llningen av materialet, som finnspublicerat i tv rapporter.UtifrÂn den genomfˆrda enk‰ten till barn/ungdomar med familjer kan So-cialstyrelsen konstatera att mÂnga barn och ungdomar med funktionshinderfÂr en bra habilitering och rehabilitering. MÂnga ‰r nˆjda bÂde med innehÂll,omfattning, bemˆtande, inflytande och mˆjligheter att pÂverka. Men Social-styrelsen kan ocks konstatera att de brister som tidigare studier har visatfortfarande kvarstÂr. TillgÂngen till habilitering/rehabilitering ‰r oj‰mnt fˆr-delad, bÂde mellan olika delar i landet och mellan olika grupper av funk-tionshinder.Sammantaget ˆver landet tas alla grupper av barn/ungdomar med funk-tionshinder emot av landstingen fˆr habilitering, men en grupp som p ettst‰lle har god tillgÂng till habilitering kan i en annan del av landet saknaviktiga insatser. ƒven inom ett och samma landsting fˆrekommer betydandevariationer.TillgÂng till habilitering och rehabilitering. Grupper som vanligen hartillgÂng till habilitering/rehabilitering ‰r barn och ungdomar med utveck-lingsstˆrning, med rˆrelsehinder och med neurologiska skador och sjukdo-mar. Barn/ungdomar med brister i tillgÂng till habilitering ‰r framfˆr allt demed funktionsneds‰ttningar till fˆljd av ADHD, autismliknande tillstÂndoch autism. Barn med flera funktionshinder, medicinska funktionshinderoch vissa kommunikationshinder, t.ex. synskada och talsvÂrigheter, fÂr inteheller sina behov av habilitering/rehabilitering tillr‰ckligt v‰l tillgodosedda.Brist p underlag. Landstingen genomfˆr inga kartl‰ggningar fˆr attkunna redovisa och fˆlja vilka barn/ungdomar som har behov av habilite-ring/rehabilitering, hur mÂnga de ‰r, vilken Âlder de har eller vilka typer avfunktionshinder det ‰r frÂga om och hur behoven ser ut.Landstingen kan inte redovisa vilka resurser som riktas till habilite-ring/rehabilitering fˆr barn och ungdomar, varken i pengar eller personal.Inflytande och mˆjlighet att pÂverka. Den enskildes mˆjligheter att pÂ-verka sin habilitering/rehabilitering ‰r begr‰nsade. S‰rskilt tycks detta g‰llabarn vars fˆr‰ldrar inte ‰r fˆdda i Sverige, har lÂg utbildning och/eller lÂginkomst.Individuell habiliteringsplan. Individuella planer enligt h‰lso- och sjuk-vÂrdslagen anv‰nds s‰llan om man ser till landstingens alla verksamheter. Ifˆrsta hand ‰r det den verksamhet som ben‰mns barn- och ungdomshabilite-ring som arbetar med individuell habiliterings/rehabiliteringsplan.
8Samverkan. Det finns brister i samverkan, bÂde internt inom landstingenoch externt mellan landstingens olika verksamheter och t.ex. skolan.Rutiner fˆr kvalitetsutveckling saknas. MÂnga kliniker saknar doku-menterade rutiner fˆr att samla in information och synpunkter frÂn bar-nen/ungdomarna och deras familjer.Information. Familjerna anser ofta att den information som de fÂr frÂnlandstingen ‰r bristf‰llig.Bemˆtande. MÂnga fˆr‰ldrar upplever att det stˆd de fÂr ‰r otillr‰ckligt.Minst nˆjda med den habilitering de fÂr ‰r familjer d‰r barnet/ungdomen harflera funktionshinder. I undersˆkningen framtr‰der tydligt fˆr‰ldrarnask‰nsla av att sj‰lva tvingas vara drivande fˆr att f det stˆd som de behˆver.Personal. Fortfarande saknas tillgÂng till insatser frÂn flera yrkesgrupperfˆr att habilitering fˆr barn och ungdomar skall fungera v‰l, framfˆr alltlogopeder, men ocks psykologer, l‰kare, kuratorer och sjukgymnaster.Socialstyrelsen anser att habilitering/rehabilitering bˆr f en starkarest‰llning inom h‰lso- och sjukvÂrden.Socialstyrelsen bedˆmer att den lagstiftning som finns ‰r tillr‰cklig underfˆruts‰ttning att den till‰mpas. Socialstyrelsen bedˆmer att ytterligare utred-ning av omrÂdet i nul‰get inte skulle gagna barn och ungdomar med funk-tionshinder.Socialstyrelsen anseratt landstingen fˆr att kunna planera sin h‰lso- ochsjukvÂrd med utgÂngspunkt i befolkningens behov regelbundet bˆr genom-fˆra kartl‰ggning av vilka grupper av barn/ungdomar med funktionshindersom finns och hur deras behov ser ut.Landstingens olika verksamheter bˆr av ledningen ges tydliga uppdragom vilka grupper av funktionshindrade som de har ansvar fˆr.SjukvÂrdshuvudm‰nnen bˆr i forts‰ttningen redovisa vilka insatser somfinns fˆr olika grupper av funktionshinder i en s‰rskild organisationsplan.SjukvÂrdshuvudm‰nnen bˆr dessutom tydligt redovisa vilka resurser i formav pengar och personal som gÂr till habilitering/rehabilitering fˆr barn ochungdomar med funktionshinder.Enligt h‰lso- och sjukvÂrdslagen skall individuella habiliterings- och re-habiliteringsplaner erbjudas barn/ungdomar med funktionshinder och derasfamiljer. Det utvecklingsarbete som pÂgÂr n‰r det g‰ller individuell planenligt h‰lso- och sjukvÂrdslagen behˆver lyftas fram och fˆrst‰rkas.Kvalitetsarbetet bˆr ges en mera framtr‰dande st‰llning inom verksam-heter med ansvar fˆr habilitering/rehabilitering och hj‰lpmedel och huvud-m‰nnen bˆr stˆdja forskning och statistikinsamling inom omrÂdet.SjukvÂrdshuvudm‰nnen bˆr ocks verka fˆr att viktiga begrepp inom ha-bilitering och rehabilitering fˆrankras inom verksamheterna
Treatment of Cerebral Palsy and Motor Delay
Uppbrott och förändring. När ungdomar med utvecklingsstörning flyttar hemifrån
Using Multimodal Annotation Tools in the Study of Multimodal Communication Involving Non speaking Persons
The creation of large, richly annotated, multimodal corpora of human interactions is an expensive and time consuming task. Support from annotation tools that make the annotation process more efficient is required, especially if the annotation effort involves really large amounts of data. Therefore we investigated how different properties of specific annotation tasks can have an impact on the design of a tool focused on that general class of tasks. In this paper we present our view on the considerations that should drive the design of new tools geared to specific tasks. The main dimensions that we consider are: observation vs interpretation, explicit and implicit input layers, segmentation, feedback, constraints, relations and the content of the annotation elements.
Usynlige eldre. Tiltak for mennesker med funksjonshemming fra minoritetsetnisk gruppe. Rapport fra Funksjonshemming og Aldring
Var finns de gamla i den svenska familjen?
Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences.
The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.
Reflektioner om dilemman i social barnvård
Self-reported exposure to intimate partner violence among women and men in Sweden: results from a population-based survey
Background
Few population-based studies assessing IPV among randomly selected women and men have been conducted in Sweden. Hence, the aim of the current study was to explore self-reported exposure, associated factors, social and behavioural consequences of and reasons given for using psychological, physical and sexual intimate partner violence (IPV) among women and men residing in Sweden.
Methods
Cross-sectional postal survey of women and men aged 18–65 years. Bivariate and multivariate logistic regression analyses were used to identify factors associated with exposure to IPV.
Results
Past-year IPV exposure rates were similar in women and men; however, earlier-in-life estimates were higher in women. Poor to moderate social support, growing up with domestic violence and being single, widowed or divorced were associated with exposure to all forms of IPV in men and women. Women and men tended to report different social consequences of IPV.
Conclusions
Our finding that women reported greater exposure to IPV earlier-in-life but not during the past year suggests the importance of taking this time frame into account when assessing gender differences in IPV. In-depth, qualitative studies that consider masculinities, femininities power and gender orders would be beneficial for extending and deepening our understanding of the gendered matter of IPV.
The enhancing connections program: Pilot study of a cognitive-behavioral intervention for mothers and children affected by breast cancer
In 2005, approximately 211,240 women in the US will be diagnosed with early stage breast cancer and an estimated 22% will be child rearing. Research reveals that both mothers and children have elevated distress attributed to the cancer; struggle with how to talk about and deal with the impact of the cancer; and both fear the mother will die. The Enhancing Connections Program (EC) was developed to reduce this cancer-related distress and morbidity. The program involves five, 1-hour educational counseling sessions delivered at 2-week intervals by specially trained clinicians. This study reports on the program's short-term impact on mothers' and children's adjustment. Thirteen households were recruited within 7.5 months of the mother's diagnosis with early stage breast cancer. Impact was evaluated within a single group design using data obtained from standardized questionnaires with established reliability and validity. Results revealed significant improvements in the mother's depressed mood, anxiety, and self-confidence to assist her child (mother report). There were also significant decreases in the child's behavioral problems (mother and father report); the child's cancer-related worries (child report); and the child's anxiety/depressed mood (mother and father report). Further evaluation is warranted within a clinical trial
The Experience of surviving traumatic brain injury
Tillsammans men var för sig. Om särboenderelationer mellan äldre kvinnor och män i Sverige
Toward a comprehensive developmental model for major depression in men
Abstract
OBJECTIVE:
The multiple risk factors for major depression are interrelated through poorly understood developmental pathways. In 2002, the authors presented a developmental model for major depression in women. Based on similar methods, they here present an analogous model for men.
METHOD:
Using data from 2,935 adult male twins, interviewed twice over a 2-4-year period, the authors constructed, by means of structural equation modeling, an integrated etiologic model for major depression that predicts depressive episodes over 1 year from 18 risk factors conceptualized as five developmental "tiers" reflecting childhood, early adolescence, late adolescence, adulthood, and the last year.
RESULTS:
The best-fitting model, including six correlations and 76 paths, provided a good fit to the data, explaining 49% of the variance in the liability to depressive episodes. The overall results, similar to those seen in women, suggest that the development of major depression results from the action and interaction of three broad pathways of internalizing symptoms, externalizing symptoms, and adversity. Childhood parental loss and low self-esteem were more potent variables in the model in men than in women. Genetic risks for major depression had a broader spectrum of action in men than in women. The pathway to major depression through externalizing symptoms was not more prominent in men than in women.
CONCLUSIONS:
Major depression in men, as in women, is an etiologically complex disorder influenced by risk factors from multiple domains that act in developmental time. The similarities in etiologic pathways to major depression for men and women outweigh the modest differences.
Treating trauma and traumatic grief in children and adolescents
This is the authoritative guide to conducting trauma-focused cognitive-behavioral therapy (TF-CBT), a systematic, evidence-based treatment for traumatized children and their families. Provided is a comprehensive framework for assessing posttraumatic stress disorder, depression, anxiety, and other symptoms; developing a flexible, individualized treatment plan; and working collaboratively with children and parents to build core skills in such areas as affect regulation and safety. Specific guidance is offered for responding to different types of traumatic events, with an entire section devoted to grief-focused components. Useful appendices feature resources, reproducible handouts, and information on obtaining additional training. TF-CBT has been nationally recognized as an exemplary evidence-based program.
Ung och oberoende – En studie av Maria Ungdoms klienter. I rapport - Vad vet vi om narkotikaanvändarna i Sverige, sid 31-37.
Unga människor med rörelsehinder – förankring, marginalisering och social exkludering. Avhandling i socialt arbete
The aim of the thesis was to describe the specific barriers young people with disabilities experience in their ambition to get a job. The aim was also to investigate how these young people's social and economic situation has been affected by their disability.The results are based on two reports: one qualitative, consisting of interviews with 12 individuals with physical disabilities, and one quantitative in the form of a questionnaire answered by 706 persons. In the case of the questionnaire, the response rate was 48 per cent. Both reports are based on the same criteria, namely, that the respondents should have a physical disability, be 20–35 years of age and be participating in some form of employment policy program.The results from both studies show that individuals with physical disabilities encounter different types of barriers on the labour market, which can be categorised as being either at the individual level or at the social level. The barriers at the individual level are low education, long-term unemployment, grave physical disability and lack of work experience. The barriers identified at the social level are primarily poorly adapted workplaces, a too high working pace, employers' negative attitudes, insufficient knowledge of the competence of disabled persons and an overly generous social welfare system. All these factors constitute a direct obstacle to employing persons with a physical disability.The results from the interview study show that the respondents have few social relations. The majority of the respondents have social intercourse solely with family members or parents. Most of the respondents in the questionnaire study state that they have frequent social relations with friends and acquaintances. Both the interview study and the questionnaire study reveal that the respondents' financial position has worsened as a result if their physical disability.Conclusions that can be drawn from this thesis are that young people with physical disabilities encounter different barriers in their attempts to get a job and to maintain social relations. Based on the results, some of the respondents can be regarded as being socio-economically marginalised
Unga vuxna med en historia av uppförandestörning. – En långtidsuppföljning med ett salutogent och ekologiskt perspektiv
Denna avhandling innehåller en huvudstudie och en delstudie. Syftet med huvudstudien var att följa upp en grupp ungdomar som hade blivit diagnostiserade med uppförandestörning (n=351) i det unga vuxenlivet. Delstudiens syfte var att ifrågasätta och klargöra frågeformuläret KASAM-29 och dess förhållande till den salutogena teorin. I avhandlingen användes olika utfallsvariabler och utfallsmått, vilka även diskuterades. Två perspektiv på utfall användes, ett salutogent och ett ekologiskt.
Det salutogena perspektivet kunde användas först efter att delstudien var klar. Delstudien visade att KASAM-29 är ett reliabelt och validt mätinstrument. Dessutom visade delstudien att huvudbegreppet i den salutogena teorin Känslan av sammanhang bör betraktas som ett holistiskt begrepp.
Huvudstudien följde upp 290 ungdomar i deras unga vuxenliv (medelålder 21 år). Utifrån det salutogena perspektivet, KASAM-29, hade ungefär hälften männen (43 %) och kvinnorna (56 %) ett negativt utfall. Det ekologiska perspektivet bestod av sju enskilda variabler: låg utbildningsnivå, transfereringsinkomst, hög symtombelastning, missbruk, kriminalitet och dygnsvård för vuxna. Genom att kombinera dessa enskilda variabler, hade ungefär två tredjedelar av männen (68-70 %) och ungefär hälften av kvinnorna ett negativt utfall i vuxenlivet. Dessa utfallsmått kunde inte substantiellt prediceras av variabler från deras medicinska patient journal.
Huvudstudien är en av få nationella och internationella långtidsuppföljningar bestående av ett kliniskt urval av ungdomar diagnostiserade med uppförandestörning. Studien visar att det är möjligt att genomföra denna typ av studier med ett litet bortfall. Individer diagnostiserade med uppförandestörning har en förhöjd risk för ett problematiskt vuxenliv. Vuxenlivet kan beskrivas på många olika sätt. Men slutsatsen är att utfallet i vuxenlivet beror på valet av utfallsmått. För att besvara frågan hur stor del av ungdomarna som hade ett negativt utfall i vuxenlivet måste utfallsmåttet först specificeras. Specificeringen måste klargöra utfallsmåttets uppbyggnad och definition. Först därefter kan frågan verkligen besvaras.
Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports
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.
Using the ICF in goal setting: Clinical application using Talking Mats
Purpose. The purpose of this article is to suggest how Talking Mats® can be used in accordance with the International Classification of Functioning, Disability and Health (ICF) proposed by the World Health Organisation (WHO) when setting intervention goals.
Method. A theoretical framework for using Talking Mats® when setting intervention goals in accordance with the ICF is provided.
Conclusions. An international system such as the ICF offers a conceptual framework that can be used to set appropriate goals for intervention. Talking Mats® on the other hand can be seen as the strategy through which individuals can be empowered to participate in this goal-setting activity.
Utveckling av anhörigstöd i Jämtlands län.
Vad är psykiskt funktionshinder? Nationell psykiatrisamordning ger sin definition av begreppet psykiskt funktionshinder
Statens offentliga utredningar
Vem ska ta hand om mamma? : Tema : Att vara anhörig
Veteranradio [ljudupptagning] : Anhöriggrupper
Who knows best? Evidence-based practice and the service user contribution
This paper reviews the assumptions underlying traditional medical research and critiques the concept of 'evidence-based practice'. In particular, it identifies and counters three basic tenets of this approach: the alleged need for objectivity in research, the notion of hierarchies of evidence and the primacy of systematic reviews. Instead, the paper argues for a new emphasis on 'knowledge-based practice', recognizing that the practice wisdom of health and social care practitioners and the lived experience of service users can be just as valid a way of knowing the world as formal research.
Widowhood and race
The health effects of marital status are frequently cited in the current debate on marriage promotion, but little is known about how marital health effects vary across groups. This article assembles the largest properly longitudinal and nationally representative dataset of elderly married couples in the United States (N = 410,272 couples) and provides strong evidence that the "widowhood effect"—how the death of a spouse increases the mortality of the survivor-varies substantially by race. The authors find that whites married to whites suffer a large and enduring widowhood effect. By contrast, blacks married to blacks do not suffer a detectable widowhood effect, possibly because they manage to extend the survival advantage of marriage into widowhood. For racially intermarried men, wife's race appears to dominate the size and presence of the widowhood effect entirely, regardless of husband's own race. These results likely arise from differences in the marital cultures and marital contexts of black and white couples. More generally, these results demonstrate that the health effects of social ties depend on the individual attributes of the actors they connect.
Work/family reconciliation, equal opportunities and social policies. The interpretation of policy trajectories at the EU level and the meaning of gender equality
Vuxna med förvärvad traumatisk hjärnskada – omställningsprocesser och konsekvenser i vardagslivet. En studie av femton personers upplevelser och erfarenheter av att leva med förvärvad traumatisk hjärnskada
The overall purpose of this study is to illuminate the changeover process experienced by individuals who as adults acquired a traumatic brain injury (TBI), to increase the knowledge and the understanding of this process, and describe the meaning of support in every day life.Persons who acquired a TBI as adults were administered a semi-structured interview covering six areas: consequences of TBI, family and social networks, working life and occupation, life-changes, support from society and everyday life. The interviews were qualitative and in-depth. A total of 15 informants participated, aged between 19-53 years when injured. Data were structured and underwent two phases of analysis. In the first phase, data underwent latent content analysis, underpinned by a hermeneutic approach, and in the subsequent phase, reanalysed within a framework derived from the theory of social recognition.Findings from the first phase of inductive analysis elicited key themes: (i) the meaning of care, a question of formal and/or informal support; (ii) the meaning of action, a question of activity versus inactivity; (iii) autonomy, a question of dependence versus independence; (iv) social interaction, a question of encounter and/or treatment; (v) the theme of changes, a question of process versus stagnation; and (vi) emotions, an oscillation between hope versus hopelessness. After the construction of the six themes each of them were, through a discursive analysis, connected with theories, earlier studies in the field of brain injuries and important interview quotations from the empirical material. During this phase, an interest developed to study the material from a new theoretical point of view. The second phase of analysis therefore involved the development of a framework derived from Honneth's (1995) theory of social recognition. The central construct of 'recognition' was analysed from three different dimensions proposed by Honneth: the individual dimension, the legal dimension, the value dimension. Using this framework, the data were reanalysed. The scientific term for this process of re-contextualisation and re-description of data is abduction inference.Reported consequences were negative as well as positive. Significant others (e.g. next of kin) had an important function as a driving force for training and preparation for life-situation after injury. A majority of the informants were satisfied with support from society, such as hospital-care, rehabilitation and community support. Such support, initially, proceeded without problems but as time passed, the responsibility shifted to the person with TBI to take the initiative in arranging longer-term services. Long-term support which addresses physical, cognitive as well as psychosocial consequences of the TBI is important for outcomes. The majority of the informants had difficulties in returning to working life after the injury. The outcomes and recovery seemed to be a prolonged process, probably never ending, but which gradually over time becomes integrated as a part of life. The informants gave varying accounts of the extent to which they experienced social recognition.
Ögonblickets pedagogik: yrkesgrupper i samtal om specialpedagogisk kompetens vid barn-och ungdomshabiliteringen
Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.
Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.
Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.
Nyckelord: Specialpedagogik, pedagogisk kompetens, barn- och ungdomshabilitering, kunskapsområden, verksamhetsfält, yrkesspråk, talgenrer, fokusgrupper, metaforer, tidig intervention, anpassat vardagligt språk, fronesis.
Ögonblickets pedagogik: yrkesgrupper i samtal om specialpedagogisk kompetens vid barn-och ungdomshabiliteringen
Doktorsavhandling i pedagogik
Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.
Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.
Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.
- See more at: http://www.skolporten.se/forskning/avhandling/ogonblickets-pedagogik-yrkesgrupper-i-samtal-om-specialpedagogisk-kompetens-vid-barn-och-ungdomshabiliteringen/#sthash.JQdaHFR7.dpuf
Bibliotherapy: using books to help bereaved children
This article explores bibliotherapy as a process in which death-related literature is used to help bereaved children cope with experiences of death and loss. For that exploration, this article defines bibliotherapy, offers an argument in support of its value, and suggests how a potential bibliotherapist might begin. Suggestions are made for selecting and using stories in bibliotherapy. Since most bibliotherapy is actually used as an optional tool in bereavement support groups, guidelines are offered as to how it might best be implemented in that context. Much of this discussion is also relevant to the use of bibliotherapy on a one-to-one basis involving a particular child and an adult guide. Examples of stories and books for children that I have used in bibliotherapy are mentioned throughout this article.
Does grief counseling work?
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.
Exposure to family violence in young at-risk children: A longitudinal look at the effects of victimization and witnessed physical and psychological aggression
This study examines the contribution of specific types of family violence exposure (e.g., victim vs. witness; physical vs. psychological) to aggressive and anxious/depressed problem behaviors in young (i.e., 6-year-old) at-risk children. This multisite prospective study of 682 children from four different regions of the country asked mothers and their 6-year-old children to report on violence exposure in their families. After controlling for mother reports of child problem behaviors on the Child Behavior Checklist at Age 4, it was found that subsequent exposure to family violence predicted reported problem behaviors at Age 6. Although mothers' report of child victimization predicted subsequent problem behaviors, witnessed violence was related to these problems only when both mothers and children reported its occurrence. The results of this study suggest that even though there was a relationship between witnessed and directly experienced family violence, both had independent, noninteractive effects on subsequent behavior problems.
Föräldrastöd i teori och praktik
Flertalet vetenskapliga studier har visat att det finns ett samband mellan barns och ungdomars upplevelser i familjen och utvecklingen av en kriminell livsstil. Föräldrastödjande verksamhet har blivit ett samlingsnamn för de åtgärder och projekt där föräldrar är delaktiga i arbetet med att förhindra sociala problem hos sina barn.
Identifying and responding to the mental health service needs of children who have experienced violence: a community-based approach
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.
Improving family functioning and child outcome in methadone maintained families: the Parents Under Pressure programme.
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.
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.
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.
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.
Sju år efter reformen. Andra uppföljningen av medicinskt färdigbehandlade inom sluten psykiatrisk vård
The Timeline Followback Spousal Violence Interview to Assess Physical Aggression Between Intimate Partners: Reliability and Validity
The psychometric properties of the Timeline Followback Spousal Violence interview (TLFB-SV), a calendar method used to assess daily patterns and frequency of spousal violence, were evaluated. Men (N = 104) entering a spousal violence treatment program, along with their female partners, were interviewed with the TLFB-SV at pretreatment, posttreatment, and quarterly thereafter for 1 year and asked to identify days of male-to-female and female-to-male physical aggression that had occurred between them. For posttreatment and follow-up interviews, participants maintained a weekly diary, in which they catalogued the days on which acts of spousal violence occurred. The subscale scores derived from the TLFB-SV, the proportion of days of any violence, and proportion of days of severe violence for each partner were calculated for each assessment interval. The TLFB-SV subscales had excellent temporal stability and concurrent and discriminant validity. Interpartner agreement on TLFB-SV subscale scores and agreement between partners on days when spousal violence occurred was low at pretreatment, but was high for the other assessment periods.
"Det är vi och vi är tillsammans" : Sju manliga anhörigvårdare berättar.
‘Norms and ideals about elder care in a European comparative perspective’.
”Are there any clinical characteristics of depression in elderly people that could be useful for case finding in general practice?”
OBJECTIVES:
The aim of this study was to identify clinical characteristics of depression in elderly people that could be useful for case finding in general practice.
DESIGN:
A cross-sectional study of clinical characteristics through review of medical records.
SETTING:
Herrhagen health centre, Karlstad, Sweden.
SUBJECTS:
Seventy-one persons with a high depressive score in a screening of depressive symptoms and an age-matched and sex-matched control group of 138 persons with a low depressive score.
RESULTS:
The high depressive score group had an increased relative risk for "mental health problems" (RR 3.4; CI 95% 1.7-7.2), "many contacts with the health care centre" (> or = 14/3 years) (RR 2.9; CI 95% 1.4-6.1), and prescriptions of benzodiazepines (RR 1.7; CI 95% 1.0-2.9). Two-thirds of those in the high depressive score group had at least one of these characteristics. However, three-quarters of those with any of these characteristics had a low depressive score. In our population of elderly people with an estimated prevalence of 10.2% the positive predictive value would be 21% and the negative predictive value 95%.
CONCLUSION:
General practitioners should suspect a possible depressive disorder in elderly patients with mental health problems, with frequent contacts with the health centre or with prescriptions of benzodiazepines. Despite the high occurrences of these prominent clinical characteristics in the high-score group, they did not unfortunately have sufficient discriminatory power to be useful for case finding.
A different parenthood?
Doktorsavhandling
Trappan modellen för samtal med barn som upplevt våld i familjen – en utvärdering för metodutveckling
Understanding and improving the burden and unmet needs of informal caregivers of homebound patients enrolled in a home-based primary care program.
Unga inneboende patienter med självdestruktivt beteende : tema: suicidprevention och trygghet
Med anledning av ett projekt inom Division Psykiatri vid USiL (Universitetssjukhuset i Lund) som syftar till att föreslå åtgärder för patienter med självskadebeteende.
Unga med självskadebeteende : en sårbar grupp som går att läka
Ungdomar i utsatta livssituationer och deras väg till självständighet
Upplevelser vid akut svår sjukdom
Using Internet to provide cognitive behavior therapy
A new treatment form has emerged that merges cognitive behaviour therapy with the Internet. By delivering treatment components, mainly in the form of texts presented via web pages, and provide ongoing support using e-mail promising outcomes can be achieved. The literature on this novel form of treatment has grown rapidly over recent years with several controlled trials in the field of anxiety disorders, mood disorders and behavioural medicine. For some of the conditions for which Internet-delivered CBT has been tested, independent replications have shown large effect sizes, for example in the treatment of social anxiety disorder. In some studies, Internet-delivered treatment can achieve similar outcomes as in face-to-face CBT, but the literature thus far is restricted mainly to efficacy trials. This article provides a brief summary of the evidence, comments on the role of the therapist and for which patient and therapist this is suitable. Areas of future research and exploration are identified.
Using research evidence to inform and evaluate early childhood intervention practices
This article includes descriptions of a process used to conduct practice-based research syntheses and the manner in which synthesis findings are used to inform and evaluate early childhood intervention practices. The main focus of a practice-based research synthesis is the unbundling of an intervention practice to identify those practice characteristics that are associated with desired outcomes and benefits. Also described are how the characteristics identified as most important are used to develop evidence-based practices and how the characteristics can be used as benchmarks to assess the likelihood that an untested practice will be effective. The article concludes with a discussion of the tension between research and practice and how that tension might be mitigated.
Using the Internet to provide cognitive behaviour therapy
A new treatment form has emerged that merges cognitive behaviour therapy with the Internet. By delivering treatment components, mainly in the form of texts presented via web pages, and provide ongoing support using e-mail promising outcomes can be achieved. The literature on this novel form of treatment has grown rapidly over recent years with several controlled trials in the field of anxiety disorders, mood disorders and behavioural medicine. For some of the conditions for which Internet-delivered CBT has been tested, independent replications have shown large effect sizes, for example in the treatment of social anxiety disorder. In some studies, Internet-delivered treatment can achieve similar outcomes as in face-to-face CBT, but the literature thus far is restricted mainly to efficacy trials. This article provides a brief summary of the evidence, comments on the role of the therapist and for which patient and therapist this is suitable. Areas of future research and exploration are identified.
Utvärdering av anhörigstöd i Skåne län
Utvärdering av anhörigstöd i Skåne län
Ramböll Management Consulting har på uppdrag av Länsstyrelsen i Skåne län
utvärderat anhörigstödet i Skåne utifrån ett anhörigperspektiv. Tio stycken
representativt utvalda kommuner i Skåne län har ingått i utvärderingen. Följande
frågor har analyserats;
Hur har anhörigstödet vidareutvecklats?
Hur har kvaliteten på anhörigstödet som erbjuds förbättrats?
Hur har tillgängligheten till anhörigstödet förbättrats?
Hur har stöd som efterfrågas av anhörigvårdare utvecklats?
Hur har anhörigvårdarnas livskvalitet förbättrats?
Hur har samverkan med andra frivilliga/ideella krafter påverkat
anhörigstödets utveckling?
Datainsamlingen har genomförts med hjälp av; intervjuer, fokusgrupper och
dokumentstudier. Flera av utvärderingens frågeställningar har kunnat belysas med
hjälp av två eller flera datainsamlingsmetoder samtidigt. Härigenom åstadkommer
vi en stabil grund för analysen och våra slutsatser.
Rambölls bedömning är att anhörigstödet har vidareutvecklats som följd av de
statliga stimulansmedlen. Fler kommuner erbjuder idag träffpunkter jämfört med
tidigare och fler må-bra-aktiviteter erbjuds. Anhörigsamordnare har inrättats i
samtliga kommuner som ingått i vårt urval och det förekommer allt fler nätverk
och erfarenhetsutbyten mellan kommunerna.
Kvaliteten i anhörigstödet har förbättrats under de åren som staten betalat ut
stimulansmedel. Fokus i flera kommuner har varit att bygga en verksamhet av god
kvalitet som är hållbar. Med anledning av detta har utvecklingen och utformandet
av verksamheten varit relativt likartad mellan kommunerna. I samtliga kommuner
som varit föremål för utvärderingen finns anhörigsamordnare samt ett brett utbud
av aktiviteter för anhörigvårdare.
Vad gäller tillgängligheten så bedömer Ramböll att den delvis har förbättrats.
Samtliga kommuner erbjuder en träffpunkt och har en anhörigsamordnare.
Information om stödet finns tillgängligt via broschyrer på exempelvis apotek och
vårdcentraler. Flera av anhörigsamordnarna, liksom biståndshandläggarna,
informerar även om stödet. Däremot upplever både kommunala tjänstemän och
anhörigvårdare att stödet inte når ut till alla som kan tänkas ha behov av det. Till
exempel är uppslutningen på träffpunkterna inte så stor som man önskat och man
vet att det finns fler i kommunen som är i behov av stödet. Vad detta beror på
finns det olika teorier om. En återkommande förklaring är att de i målgruppen inte
5
själva identifierar sig som vårdare av en anhörig utan i första hand som
make/maka där det är en plikt att man tar hand om sin sjuka närstående. Flera
anhörigvårdare beskriver hur svårt det är att ta klivet till att se bortom sin
närståendes situation och även börja tänka på och ta hand om sig själv.
Anhörigvårdare får det stöd de efterfrågar, inom ramen för vad som är rimligt. Det
är vanligt att anhörigsamordnare ordnar träffar och fokusgrupper där
anhörigvårdare lämnar förslag på hur de vill att exempelvis aktiviteterna och
träffpunkterna ska utformas och vad de ska innehålla. Som exempel efterfrågar
vissa anhörigvårdare utbildningar och information om exempelvis lyftteknik eller
demenssjukdomens olika stadier som kan ske i samband med träffpunkterna. Det
är också vanligt att andra föreningar och kommunala verksamheter bjuds in för att
prata om vilket stöd de kan bidra med.
Vad gäller livskvaliteten menar anhörigvårdare som deltar i verksamheten att den
definitivt har ökat. Man upplever trygghet och gemenskap. Avlastningen gör att
man känner sig spontan och fri. Dessutom upplever man mindre stress och oro då
man vet att man har någonstans att vända sig när det känns jobbigt. De anhöriga är
överens om att kommunens åtgärder leder till ökad livskvalitet för dem.
Samverkan med andra organisationer och föreningar varierar från kommun till
kommun och har delvis ökat. Svenska kyrkan och Röda Korset är de vanligaste
samverkanspartnerna. Andra man samverkar med är exempelvis pensionärs-,
demens- och invandrarföreningar. Att samverkan inte har ökat i högre
utsträckning kan bero på att det finns en viss konkurrens mellan föreningarna då
varje förening bevakar sitt medlemsantal. Rambölls bedömning är alltså att en
bristande samverkan inte beror på att anhörigsamordnaren underlåtit att försöka
etablera en samverkan.
Avslutningsvis har det förts resonemang dels om framgångsfaktorerna sett ur ett
organisatoriskt och verksamhetsperspektiv, dels om kommunen hade genomfört
åtgärderna utan statligt stöd.
Sett ur ett organisatoriskt perspektiv har speciellt viktiga framgångsfaktorer varit
inrättandet av anhörigsamordnare vars uppdrag varit att initiera verksamheten för
de anhöriga. Rambölls bedömning är att anhörigvårdarna själva inte hade orkat
starta en liknande verksamhet. Förutom att anhörigsamordnare har bidragit till att
skapa ett socialt nätverk för anhörigvårdare har de även arbetat aktivt med att
förankra anhörigperspektivet i alla delar av organisationen för att anhörigstödet
ska vara hållbart.
Sett ur ett verksamhetsperspektiv har en viktig framgångsfaktor för anhörigstödet
varit att de anhöriga själva har kunnat påverka utformningen av stödet. Dock har
den önskade effekten av information och kartläggningar, att nå hela målgruppen,
uteblivit.
6
Rambölls bedömer även att flera av aktiviteterna inte hade kunnat genomföras
utan statligt stöd. Anhörigstödet har delvis finansierats av kommunala medel men
med hjälp av statliga stimulansmedel har stödet kunnat prioriteras och fokuseras.
Utvärdering av den avgiftsfria avlösningen inom äldreomsorgens Öppna och förebyggande verksamhet
Utvärdering av den avgiftsfria avlösningen inom äldreomsorgens Öppna och förebyggande verksamhet
Syftet med utvärderingen är att ta reda på om den avgiftsfria avlösningen har underlättat
situationen för anhöriga som hjälper eller vårdar någon närstående i hemmet, samt att inhämta
synpunkter och förslag på olika former av stöd kommunen bör vidareutveckla och satsa på.
En första utvärdering gjordes för perioden september 2005 t.o.m. februari 2006, den andra för
perioden mars 2006 t.o.m. december 2007.
Utvärderingen för perioden januari 2008 t.o.m. december 2008 genomfördes som tidigare i
enkätform och sändes till de 69 anhöriga i Uppsala kommun som erbjudits avgiftsfri
avlösning i hemmet eller i gruppverksamhet. De flesta anhöriga är maka/make men fyra är
barn samt ett syskon. Svar erhölls från 47 personer, varav 34 kvinnor och 13 män.
Den vanligaste orsaken till närståendes behov av hjälp är nedsatt fysisk och psykisk oförmåga
i kombination med annan sjukdom såsom demenssjukdom och stroke. Även hjärtkärlsjukdom
och nedsatt syn- och hörsel uppges som orsak till hjälpbehov.
Majoriteten av de anhöriga tycker att avlösningen har fungerat mycket bra. De är nöjda med
att få tid till att uträtta ärenden och att få ägna sig åt egna intressen. Samtidigt är den
närståendes välbefinnande och möjlighet till aktivitet och omväxling viktig. För dem som har
avlösning i hemmet skapar det trygghet att det är samma person som kommer.
När det gäller önskemål om stöd och hjälpinsatser handlar det främst om att få mer tid avsatt
för avlösning.
Utvärdering av övernattningsplatser för personer med demenssjukdom – En modell för dagverksamhet och anhörigstöd, FoU-rapport 2009/2.
Validation of an inventory of best practices in the provision of augmentative and alternative communication services to students with severe disabilities in general education classrooms
Purpose: To compile and then validate a set of evidence-based best practices related to augmentative and alternative communication (AAC) and its role in fostering the inclusion of students with severe disabilities in general education classrooms and other inclusive settings. Method: A comprehensive review of the literature pertaining to AAC and inclusive education for students with severe disabilities in inclusive classrooms resulted in an inventory of possible best practices. Reliability testing was conducted to verify levels of evidence assigned to each source and corresponding practice. Practices were reviewed and validated by a panel of 8 experts. Statistical analysis revealed a high level of internal consistency across items composing the inventory. Results: An inventory of 91 practices, each assigned to 1 of 8 predetermined categories, was uncovered. Themes arising in experts' comments related to items in the inventory are discussed. Conclusions: Possible uses of the inventory are discussed along with suggestions for future research. © American Speech-Language-Hearing Association.
Vård och omsorg om äldre: lägesrapport 2008Vård och omsorg om äldre: lägesrapport 2008
Åldrande, död och anhörigskap
Äldre människors upplevelser av att vara beroende av vård. C-uppsats
Äldres upplevelse av IT och isolering i samband med ACTION- användande. (C-uppsats)
Biståndshandläggare. Ett (o)möjligt uppdrag. En översikt av aktuell forskning om biståndshandläggarnas yrkesroll och organisering
Det övergripande syftet med denna studie är att göra en översikt av aktuell forsk-ning om biståndshandläggarnas yrkesroll. Ett annat syfte är att beskriva och granska olika modeller för, och sätt att organisera biståndsbedömning som finns redovisade i utvecklingsprojekt och forskning.
Decreasing the risk of complicated bereavement and future psychiatric disorders in children
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.
Från psykiskt sjuk till psykiskt funktionshindrad
Från psykiskt sjuk till psykiskt funktionshindrad belyser de förändrin gar som ägt rum inom den svenska psykiatrin sedan början av 1990-talet , med speciell tyngdpunkt på psykiatrireformen 1994 och dess konsekven ser. Denna reform har bland annat lett till att den kommunala socialtj änsten fått ett allt större ansvar för omsorgen om personer med långva riga och svåra psykiska funktionshinder. Teman som lyfts fram är försk jutningen från begreppet ?psykisk sjukdom? till ?psykiskt funktionshin der?, vår kunskap kring psykiska funktionshinder och hur drabbade pers oner hanterar dessa i sin vardag. Vidare diskuteras de nya roller som anhöriga och frivilligorganisationer fått efter avvecklingen av de gam la mentalsjukhusen; de krav på delaktighet och inflytande över det egn a livet som psykiskt funktionshindrade ställer, något som också föränd rar villkoren för dem som arbetar med dessa frågor. Boken vänder sig s peciellt till personer som utbildar sig inom vård och omsorg
Interplay between formal and informal care of older people
Intresseorganisering och självhjälp
Lära som vuxen.
Parent management of attendance and adherence in child and adolescent therapy: A conceptual and empirical review
There have been impressive, recent advances in the development of efficacious treatments for child and adolescent behavior problems. However, specific methods for delivering these treatments in a way that amplifies their efficacy have not been well articulated. Although many factors may be involved, attendance and adherence to treatment are arguably the most basic necessities for effective treatment delivery. We provide a conceptual and empirical review of past research on attendance and adherence to child and adolescent therapy, with a special focus on the importance of parents/guardians in managing treatment participation. Our review demonstrates that attendance and adherence are associated with a range of significant methodological, clinical, and financial outcomes. Several pretreatment predictors of attendance and adherence have been identified; however, to date only 12 controlled, clinical trials have evaluated strategies for enhancing attendance and adherence to child therapy. We conclude with an agenda for advancing research on the prediction and enhancement of attendance and adherence to child therapy as a means of improving the efficiency and effectiveness of child treatments.
Relatives of psychiatric inpatients – do physical violence and suicide attempts of patients influence family burden and participation in care?
A common concern of psychiatric patients' relatives is that patients might be a danger to themselves or others. The aim of this study was to investigate family burden and relatives' participation in care in relation to physical violence towards others and suicide attempts by psychiatric inpatients before admission. Information concerning violence and suicide attempts by the patients prior to admission was collected from the medical records of 155 acutely voluntarily and involuntarily admitted psychiatric inpatients. Relatives were interviewed a month after admission, using a semi-structured questionnaire. Violence towards other persons and suicide attempts were recorded in 16% and 17% of the cases, respectively. There were no differences between relatives of patients who had been violent and other relatives regarding burden and participation in care. Relatives of patients with suicide attempts more often stated they had been prevented from having own company, worried about suicide attempts by the patient, had mental health problems of their own, and had own need for care and support. It was concluded that violence of acutely admitted psychiatric patients, targeted at other people, was not associated with burden of family, but the results corroborate the need for psychiatric services to involve and support relatives of psychiatric patients with suicidal behaviour.
Scoping studies: towards a methodological framework
This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.
Siblings of Children With Disabilities: Research Themes
Until the early 1980s, most researchers paid little attention to sibling relationships. Studies of mothers dominated the research agenda, to the almost total exclusion of fathers, extended families, and siblings. Although in early classic studies of families of children with disabilities, investigators embraced a family systems approach that included siblings (i.e., Farber & Jenne, 1963), this emphasis did not take root until recently. There has been an impressive growth in the number of published studies focusing on siblings of children with disabilities. In this paper, my goal is to examine themes in this research and reflect on our state of knowledge.
Spouses' quality of life 1 year after stroke: prediction at the start of clinical rehabilitation
BACKGROUND AND PURPOSE:
The purpose of this prospective study was to identify early predictors of spouses' quality of life at 1 year after stroke.
METHODS:
At the start of clinical rehabilitation patient and caregiver characteristics, psychological factors, harmony in the relationship and social support were assessed. One year after stroke, caregiver burden (Caregiver Strain Index), life satisfaction (Life Satisfaction Checklist) and depressive symptoms (Goldberg Depression Scale) were assessed in 187 participants. Multiple regression analyses were performed.
RESULTS:
About 80% of the spouses reported low quality of life on one or more of the measures; 52% reported depressive symptoms, 54% significant strain and only 50% was satisfied with life as a whole. The regression analysis identified 'passive coping strategy of the caregiver' as the most important predictor. ADL dependency was the only baseline patient characteristic significantly related to burden and life satisfaction, but explained just 0-4% of the variance.
CONCLUSIONS:
A large proportion of caregivers perceive impaired quality of life 1 year after stroke. Caregivers at risk should be identified at the start of rehabilitation by means of coping measurement instruments or selected anamneses on coping.
2005 S. Karger AG, Basel
Striving to survive: Families’ lived experiences when a child is diagnosed with cancer
When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families' lived experience was described as a 2-fold essential theme comprising "a broken life world" and an immediate "striving to survive." The families' secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family.
"Ensamhet i tvåsamheten" : Anhörigas erfarenheter av att vårda personer med demenssjukdom i hemmet (Meddelande från Blekinge FoU-enhet, 2005:1).
“Generalised anxiety disorder in elderly patients: epidemiology, diagnosis and treatment options”
Generalised anxiety disorder (GAD) is characterised by at least 6 months of excessive uncontrollable worry accompanied by symptoms of motor tension and vigilance and scanning. As with other anxiety disorders, GAD is less prevalent in older adults than younger adults. GAD has a high level of comorbidity with other psychiatric disorders and this has a bearing on estimates of its prevalence. GAD that is comorbid with another psychiatric disorder has a period prevalence of approximately 4% in community-dwelling older people. On the other hand, 'pure' GAD is less common, with a period prevalence of approximately 1%. Pure GAD in late life is a fairly even mix of chronic cases that began earlier in life and cases starting for the first time in later life. The most frequent and consistent finding regarding late-life generalised anxiety is its high level of comorbidity with major depression. There are few longitudinal data pertaining to the temporal association of generalised anxiety and major depression in late life, but the data that do exist suggest that the anxiety is frequently symptomatic of the depression. If generalised anxiety occurs exclusively during episodes of major depression, a separate diagnosis of GAD is not warranted. Cognitive behaviour therapy (CBT) is the most frequently studied psychological treatment for GAD. Although CBT is more effective than a wait-list control condition, it is not more effective than nondirective therapies in late-life GAD. Furthermore, a standard course of CBT appears to be less efficacious for GAD in older adults than younger adults. Further research is needed to develop more efficacious and specific forms of psychotherapy for late-life GAD. The three classes of medications that are most commonly used for GAD are: (i) antidepressants; (ii) benzodiazepines; and (iii) buspirone. Antidepressant medication is the pharmacological treatment of choice for most older adults with generalised anxiety. When generalised anxiety is secondary to an episode of major depression, the selection of an antidepressant is guided by the same principles that apply to treatment of nonanxious depression. Antidepressant medication is also effective for GAD in the absence of an episode of major depression. In this situation, citalopram and venlafaxine have been found to be efficacious in older people. Data from studies of mixed-aged patients suggest that escitalopram, paroxetine and trazodone may also be beneficial in late-life GAD. Despite their widespread use in older persons with anxiety, benzodiazepines have a limited role in the treatment of GAD in the elderly. If a benzodiazepine is initiated, pharmacokinetic considerations favour the use of either lorazepam or oxazepam. Buspirone also has a more limited role than antidepressants in the treatment of late-life GAD.
A cross general comparison of alcohol challenges at about age 20 in 40 father-offspring pairs
Abstract: Background: A low level of response (LR) to alcohol is one of several genetically-influenced phenotypes associated with an elevated risk for heavy drinking and alcoholism. While most studies support the influence of genes for this characteristic, no data to date have addressed how LR established from alcohol challenges performs in similarly aged subjects across generations
Methods: Between 1978 and 1988, 18-to-25-year-old non-alcohol-dependent Caucasian male drinkers participated in the San Diego Prospective Study alcohol challenges. The paradigms included self-reports of feelings of "High" and "Intoxication," as well as alcohol-related changes in body sway. In recent years, 40 18-to-29-year-old offspring of 25 of these original probands were tested using a similar protocol
Results: Despite the passage of two decades between laboratory sessions across generations, for family history positive (FHP) subjects, significant positive correlations were observed for subjective feelings of intoxication and body sway after alcohol. Parent-offspring correlations were in the predicted direction for subjective feelings for family history negatives (FHNs), but were not significant. Across offspring, LR values were lower for FHPs overall, with significant differences at 60 or 90 min for five items
Conclusions: The similarities in LR across generations, while not proving heritability, are consistent with prior reports regarding genetic influences in the LR to alcohol. The significant correlations across generations and over two decades support the reliability of the alcohol challenge results.
A Hermeneutic Phenomenological Analysis of Ageing with a Childhood Onset Disability
In this qualitative study, we combined multiple interviews, field notes, life history review charts, and demographic questions to explore the life course experiences of 25 women, ages 55 to 65 years, who developed impairments due to paralytic polio during childhood. Based on a hermeneutic phenomenological methodology using thematic analysis, multiple themes emerged that traced their lives from childhood to later adulthood. The women described how they pushed their bodies and dismissed their physical decline as long as possible. The women's early experiences combined with the culturally defined role expectations for women to influence their perceptions of how to react to changing physical abilities with age.
Adolescent drug abuse: helping families survive. International journal of mental health nursing
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.
An exploration of different models of multi-agency key worker services for disabled children: Effectiveness and costs. Research report 656
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 exploration of different models of multi-agency key worker services for disabled children: Effectiveness and costs. Research report 656.
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 investigation into parent perceptions of the needs of siblings of children with cancer
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.
Anhörigas betalda och obetalda äldreomsorgsinsatser
”Det borde vara kramar på recept” – en utvärdering av den enskildes inflytande i vård- och stödsituationer inom ramen för Positiv-projektet, Stockholms län
Nationellt kvalitetsregister för habilitering
HabQ är ett samarbete mellan föreningen Sveriges habiliteringschefer och flertalet regioner/landsting samt Hälsouniversitetet - Avdelningen för fysioterapi i Linköping.
Navigeringskurs för anhöriga till personer med demenssjukdom. En utvärdering av ett projekt på Dalens minnesmottagning. Rapport 2013:6.
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.
Offspring psychological and biological correlates of parental posttraumatic stress: review of the literature and research agenda
Millions of individuals with posttraumatic stress disorder (PTSD) are parents. A burgeoning literature suggests that offspring of parents with this condition may be at increased risk for psychological problems. The current paper provides an integrative and comprehensive review of the diverse research literature examining the sequelae of parental posttraumatic stress among offspring. Over 100 studies that evaluated psychological and/or biological variables among children of parents with PTSD are reviewed. Findings suggest parental symptoms of posttraumatic stress are uniquely related to an array of offspring outcomes, including internalizing-type problems, general behavioral problems, and altered hypothalamic-pituitary-adrenal axis functioning. Although very little work has directly evaluated mechanisms of transmission, there is increasing support for genetic and epigenetic effects as well as parenting behaviors. These and other mechanisms are discussed; drawing upon findings from other literatures to consider how parental PTSD may impart psychobiological vulnerability upon offspring. We conclude with a detailed discussion of the methodological strengths and challenges of the extant research, along with a recommended agenda for future research in this important area of study.
Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).
The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.
Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).
The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.
Paired Reading. Ett försök i sju kommuner med lästräning för familjehemsplacerade barn
Sju kommuner genomförde ett försök med Paired
Reading (parläsning) med syfte att förbättra läsförmågan
hos familjehemsplacerade barn. I försöket
utbildades familjehemsföräldrar i en enkel metod
som bygger på läsning med barnen 20 minuter/dag,
tre gånger i veckan under en 16-veckorsperiod. Försöket
utvärderades genom jämförelser av barnens
testade läsfärdigheter före (T1) och efter lästräningen
(T2). I jämförelserna minskades testvärdena vid
T2 med ett estimat av tidseffekten (den förbättring
som förväntas även om barnen inte hade deltagit i
försöket). Dessutom samlade vi in information om
hur läsningen fungerade i familjehemmen. Rapporten
baseras på analyser av 81 barn, huvudsakligen
placerade i långvarig familjehemsvård, som gick i
årskurserna 2-6 (8-12 år).
Två frågor ställdes i utvärderingen:
1. Är det möjligt att genomföra ett program där
familjehemsföräldrar regelbundet och under en längre
sammanhängande tid läser med de placerade barnen?
Ja, det är möjligt. Bortfallet var mycket lågt
(2.4% bland de som påbörjade försöket) och enligt
familjehemmens rapportering läste den stora
majoriteten (90%) minst mellan två och tre gånger/
vecka, det vill säga de hade enligt vår bedömning
genomfört programmet på ett godtagbart sätt.
2. Förbättrar Paired Reading barnens läsförmåga?
Oavsett ålder/årskurs fick barnen vid T2 bättre
resultat på testerna där läsåldern graderades (LäSt
NonOrd och LäSt Ord). Förbättringen motsvarade
i genomsnitt 11 månader. Om man räknar bort
tidseffekten förbättrade barnen sin läsålder med
cirka sju månader ("nettoförbättring"). Barnen
förbättrade också sitt ordförråd markant, mätt med
ett deltest i WISC-IV.
Ytterligare två tester administrerades till de
yngre barnen i åk 2-3; Bokstavskedjor och Ordkedjor.
Även dessa testresultat visade på signifikanta
förbättringar över tid. Det innebär att de yngre barnen
förbättrade sin läsförmåga enligt samtliga fem
tester (WISC-IV Ordförråd, Läst NonOrd, LäSt
Ord, Bokstavskedjor och Ordkedjor).
För de äldre barnen i åk 4-6 användes ytterligare
fem tester utöver LäSt Non Ord/LäSt Ord och
Ordförråd i WISC-IV. Av dessa fem tester visade
ett på en statistisk signifikant förbättring (Teckenkedjor)
och ett visade en tendens till förbättring
(Ordkedjor). Tre visade bara på svaga tendenser till
förbättring (Meningskedjor och läsförståelsetesterna
Draken och Isbjörnen). De äldre barnen hade med
andra ord klara förbättringar på fyra av åtta tester
(WISC- IV Ordförråd, LäSt NonOrd och LäSt
Ord samt Teckenkedjor), en tendens till förbättring
på ett test (Ordkedjor) men bara svaga tendenser
till förbättring på tre tester (Meningskedjor, Draken
och Isbjörnen).
Sammanfattande slutsats
Paired Reading är ett genomförbart lässtödsprogram
för familjehemsplacerade barn. Det har i
denna före-efterstudie visat sig förbättra läsförmå-
gan hos barn i årskurs 2-6.
Pappa, vad är schizofreni?
Roger Zetterström, bokens författare, är skötare i psykiatri och socionom, han arbetar som personligt ombud för vuxna med långvarig psykisk ohälsa.
Parental styles in the intergenerational transmission of trauma stemming from the Khmer Rouge regime in Cambodia
The impact of parental styles in intergenerational transmission of trauma among mothers who survived the Khmer Rouge regime in Cambodia, in power from 1975 to 1979, and their teenaged children was examined in 2 studies. In Study 1, 46 Cambodian female high school students and their mothers were recruited. Each daughter completed anxiety and depression measures as well as assessment of her mother's role-reversing, overprotective, and rejecting parental styles, whereas the mothers completed measures of their trauma exposure during the Khmer Rouge regime and PTSD symptoms. In support of trauma transmission, the mother's PTSD symptoms were predictive of her daughter's anxiety. Moreover, the mother's role-reversing parental style was shown to mediate the relationship between her own and her daughter's symptoms. In support of their generalizability, the results were replicated in Study 2 in a Cambodian-American refugee sample comparing 15 mental health treatment-seeking mothers and their teenaged children with 17 nontreatment-seeking mother–child pairs. The implications of the findings within the larger literature on intergenerational trauma transmission stemming from genocide are discussed.
Parenting in Recovery Program: Participant Responses and Case Examples.
Approximately 80% of children served by child welfare agencies have parents who abuse or are dependent on alcohol or illicit drugs. Despite the devastating effects on children from living in substance abusing families, child protective service practitioners have limited options available to assist these families. The Parenting in Recovery program was created to address the needs of substance-abusing mothers involved in child welfare. This manuscript describes this program and perceptions of participants concerning its effectiveness.
Participants' experiences of an early cognitive behavioral intervention for adolescents with symptoms of depression
Cognitive–behavioral therapy (CBT) has been documented to be effective in treating depression in adolescence, but there is great variability in the clinical outcome of CBT trials. This may in part be due to variations in the content of, and emphasis on different CBT components. Moreover, little is known about adolescents' subjective experiences of CBT interventions, which also might be related to outcome. In this qualitative study, nine adolescents were interviewed about their experiences of the specific components in a CBT group intervention. The results showed that the adolescents experienced the cognitive component of the course as most useful, but somewhat difficult to use. Psycho-education, behavioral activation and the social relationships component were also experienced as beneficial. Their experiences regarding the relaxation training and the homework assignments were mixed. Negative aspects of the intervention included the experience of guilt related to being depressed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)
Patterns of care and support in old age
This study describes the situation for community living older people, 65 years of age and older in Iceland, analyzing their needs for care and services and how these needs are met. The study analyzes the relationship between the main providers of help and care, the formal caregivers and the informal carers. The study further depicts what kinds of care and support older informal caregivers provide and receive themselves and analyze what factors are related to providing care alone or in combination with other caregivers, informal and formal. The study also analyzes the relationship and mutual support between grandparents and grandchildren and whether there are gender differences in intergenerational relations and support. As little research has been conducted on informal care in Iceland, it is important to show the importance of the informal carers in the care paradigm. Two Icelandic studies were used for the descriptions and analysis. The main data source is the ICEOLD survey (Icelandic older people), based on a random representative national sample of 700 non-institutionalized persons in ages 65 – 79 years and 700 persons aged 80+. The final sample consists of 1,189 older persons to which an introduction letter was sent. They were contacted by phone a few days later and 782 persons, 341 men and 441 women, agreed to participate, giving a response rate of 66%. A study carried out among college students in Iceland, The Grammar School study, was also used to retrieve information on intergenerational relations between grandparents and grandchildren.
Pegasus: kurs för vuxna med adhd och deras närstående. Arbetsbok för kursansvariga
Den andra upplagan av PEGASUS - kurs för vuxna med ADHD och deras närstående är en revidering och uppdatering av det kompletta psykoedukativa kursmaterialet från 2013. Inom många verksamheter har PEGASUS redan hunnit bli ett självklart första steg att erbjuda till vuxna med diagnosen ADHD.
PEGASUS har utvecklats för att bemöta behoven av information, erfarenhetsutbyte och utbildning i funktionsnedsättningen ADHD. Den andra upplagan av PEGASUS har reviderats för att på ett bättre sätt möta de varierande behoven i olika grupper och har uppdaterats med aktuell information bland annat om läkemedelsbehandling.
PEGASUS genomförs i grupp och ger ökad kunskap om ADHD, behandlingar, strategier och vad det finns för stöd att tillgå. Dessutom får deltagarna möjlighet att lära sig mer om sig själva och nå större förståelse för andras situation och på det sättet förbättra relationskvalitén. Gruppformatet ger många tillfällen för erfarenhetsutbyte med andra i liknande situation. PEGASUS är ett bra alternativ som en första psykologisk behandling efter diagnos.
Arbetsgruppen bakom PEGASUS har en lång samlad erfarenhet av arbete med personer med diagnosen ADHD. I Arbetsboken beskrivs och refereras till ett flertal studier där PEGASUS har prövats ut med goda preliminära resultat.
Personer med funktionsnedsättning – vård och omsorg den 1 oktober 2012
Statistiken i den här rapporten baseras på personnummerbaserade uppgifter som kommunerna lämnat in per den 1 oktober samt för oktober månad 2012 och visar att:
Drygt 20 500 personer med funktionsnedsättning bodde permanent i särskilt boende eller var beviljade hemtjänst i ordinärt boende. Det är något färre än i oktober 2011.
Drygt 16 400 personer med funktionsnedsättning var beviljade hemtjänst i ordinärt boende. Cirka 200 personer färre än i oktober 2011.
Cirka 31 procent av personerna mellan 0-64 år med biståndsbeslut om hemtjänst i ordinärt boende var beviljade mellan 1 och 9 hemtjänsttimmar per månad. Cirka 10 procent var beviljade 80 timmar eller mer. Det är samma fördelning som vid tidigare mättidpunkter.
Drygt 4 100 personer i åldern 0-64 med funktionsnedsättning bodde permanent i särskilt boende, ungefär 200 färre än i oktober 2011.
Cirka 18 300 personer i åldern 0-64 med funktionsnedsättning hade ett biståndsbeslut om boendestöd. Det är 800 personer fler än i oktober 2011.
Cirka 1 200 personer i åldern 0-64 med funktionsnedsättning hade biståndsbeslut om korttidsvård/korttidsboende, 4 300 om kontaktperson/kontaktfamilj och 5 700 om dagverksamhet.
Ungefär 29 400 personer i åldern 0-64 år med funktionsnedsättning någon gång under oktober månad mottagare av hälso- och sjukvård som kommunen ansvarade för. Nästan hälften av dessa var kvinnor, totalt var det 1 000 fler än i oktober 2011.
Positive and negative evaluation of caregiving among three different types of informal care relationships
Based on the caregiver stress model, we examined how care demands, caregiver motivation, coping style and external support are associated with positive evaluation and caregiver burden among spousal, adult child and other types of care relations. Data from a sample of Dutch informal caregivers of 1,685 older persons (55 and older) were analyzed employing multivariate linear regression analyses for each of the care relationship types. Spouses (N = 206) report high positive evaluation and high burden, adult children (N = 1,093) report low positive evaluation, and other caregivers (N = 386) report high positive evaluation and a low burden. Multivariate linear regression analyses showed that motives and external support were important for positive evaluation but the impact varied among types of caregivers, whereas care demands and not asking for help were associated with burden for all types. Only among 'other' caregiver relationships, positive evaluation was negatively associated with burden. It is concluded that results confirm the dual nature of caregiving among spouses and children. The care context and motivation of the different types of caregivers explain their differences in care evaluation. Various interventions for types of caregivers are discussed.
Posttraumatic stress disorder among preschoolers exposed to ongoing missile attacks in the Gaza war
BACKGROUND:
The prevalence and manifestation of posttraumatic stress symptoms in young children may differ from that observed in adults. This study examined sociodemographic, familial, and psychosomatic correlates of posttraumatic stress disorder (PTSD) among preschool children and their mothers who had been exposed to ongoing missile attacks in the Gaza war.
METHODS:
One hundred and sixty-seven mothers of preschoolers (aged 4.0-6.5 years) were interviewed regarding PTSD and psychosomatic symptomatology of their children, as well as their own reactions to trauma.
RESULTS:
Fourteen mothers (8.4%) and 35 children (21.0%) screened positive for PTSD. Sociodemographic characteristics were not associated with PTSD among mothers or children. Among children, the only significant risk factor was having a mother with PTSD (OR = 12.22, 95% CI 2.75-54.28). Compared to children who did not screen positive for PTSD, those who did screen positive displayed significantly higher rates of psychosomatic reactions to trauma, most notably constipation or diarrhea (OR = 4.36, 95% CI 1.64-11.60) and headaches (OR = 2.91, 95% CI 1.07-7.94).
CONCLUSIONS:
Results of this study add to the burgeoning literature on child PTSD, emphasizing the important role of maternal anxiety and the psychosomatic reactions associated with exposure to ongoing traumatic experiences in young children.
Predicting Language Outcomes for Children Learning Augmentative and Alternative Communication: Child and Environmental Factors
PurposeTo investigate a model of language development for nonverbal preschool-age children learning to communicate with augmentative or alternative communication.
MethodNinety-three preschool children with intellectual disabilities were assessed at Time 1, and 82 of these children were assessed 1 year later, at Time 2. The outcome variable was the number of different words the children produced (with speech, sign, or speech-generating devices). Children's intrinsic predictor for language was modeled as a latent variable consisting of cognitive development, comprehension, play, and nonverbal communication complexity. Adult input at school and home, and amount of augmentative or alternative communication instruction, were proposed mediators of vocabulary acquisition.
ResultsA confirmatory factor analysis revealed that measures converged as a coherent construct, and a structural equation model indicated that the intrinsic child predictor construct predicted different words children produced. The amount of input received at home, but not at school, was a significant mediator.
ConclusionsThe hypothesized model accurately reflects a latent construct of Intrinsic Symbolic Factor (ISF). Children who evidenced higher initial levels of ISF and more adult input at home produced more words 1 year later. The findings support the need to assess multiple child variables and suggest interventions directed to the indicators of ISF and input.
Prevalence of adolescents who perceive their parents to have alcohol problems: A Swedish national survey using a web-panel
The primary aim is to estimate the prevalence of Swedish adolescents who perceive their parent(s) to have alcohol problems. Additional research questions pertain to the prevalence of adolescents who think someone close to them drinks too much alcohol and if this has hurt them or caused them problems.
A cross-sectional design was employed using a web-based survey targeted to 1000 Swedish 16-19-year-olds randomly selected from a web panel. The questionnaire included the CAST-6 scale, used to assess whether or not participants perceived their parents' alcohol consumption as problematic, and questions relating to whether or not they think someone close to them drinks too much and if this has caused them problems. Data was weighted using a post-stratification procedure.
The proportion of adolescents classified as having parents with alcohol problems was 20.1%. Further, 44.0% reported that they think someone close to them drinks too much alcohol and 9.6% that this has hurt them or caused them problems.
These results indicate that the problem is widespread. Our findings are similar to previous research where a more indirect methodology has been adopted, using either psychiatric interviews or self-reported alcohol consumption of adults, to estimate the magnitude of the problem.
Prevalence of alcohol use before and during pregnancy and predictors of drinking during pregancy: a cross sectional study in Sweden.
Background
There is a paucity of research on predictors for drinking during pregnancy among women in Sweden and reported prevalence rates differ considerably between studies conducted at different antenatal care centres. Since this knowledge is relevant for preventive work the aim of this study was to investigate these issues using a multicenter approach.
Methods
The study was conducted at 30 antenatal care centers across Sweden from November 2009 to December 2010. All women in pregnancy week 18 or more with a scheduled visit were asked to participate in the study. The questionnaire included questions on sociodemographic data, alcohol consumption prior to and during the pregnancy, tobacco use before and during pregnancy, and social support.
Results
Questionnaires from 1594 women were included in the study. A majority, 84%, of the women reported alcohol consumption the year prior to pregnancy; about 14% were categorized as having hazardous consumption, here defined as a weekly consumption of > 9 standard drinks containing 12 grams of pure alcohol or drinking more than 4 standard drinks at the same occasion. Approximately 6% of the women consumed alcohol at least once after pregnancy recognition, of which 92% never drank more than 1 standard drink at a time. Of the women who were hazardous drinkers before pregnancy, 19% reduced their alcohol consumption when planning their pregnancy compared with 33% of the women with moderate alcohol consumption prior to pregnancy. Factors predicting alcohol consumption during pregnancy were older age, living in a large city, using tobacco during pregnancy, lower score for social support, stronger alcohol habit before pregnancy and higher score for social drinking motives.
Conclusions
The prevalence of drinking during pregnancy is relatively low in Sweden. However, 84% of the women report drinking in the year preceding pregnancy and most of these women continue to drink until pregnancy recognition, which means that they might have consumed alcohol in early pregnancy. Six factors were found to predict alcohol consumption during pregnancy. These factors should be addressed in the work to prevent alcohol-exposed pregnancies.
Preventive interventions and sustained attachment security in maltreated children
Thirteen-month-old maltreated infants (n = 137) and their mothers were randomly assigned to one of three conditions: child-parent psychotherapy (CPP), psychoeducational parenting intervention (PPI), or community standard (CS). A fourth group of nonmaltreated infants (n = 52) and their mothers served as a nonmaltreated comparison (NC) group. A prior investigation found that the CPP and the PPI groups demonstrated substantial increases in secure attachment at postintervention, whereas this change was not found in the CS and the NC groups. The current investigation involved the analysis of data obtained at a follow-up assessment that occurred 12 months after the completion of treatment. At follow-up, children in the CPP group had higher rates of secure and lower rates of disorganized attachment than did children in the PPI or the CS group. Rates of disorganized attachment did not differ between the CPP and the NC groups. Intention to treat analyses also showed higher rates of secure attachment at follow-up in the CPP group relative to the PPI and the CS groups. However, groups did not differ on disorganized attachment. Both primary and intention to treat analyses demonstrated that maternal-reported child behavior problems did not differ among the four groups at the follow-up assessment. This is the first investigation to demonstrate sustained attachment security in maltreated children 12 months after the completion of an attachment theory informed intervention. The findings also suggest that, although effective in the short term, parenting interventions alone may not be effective in maintaining secure attachment in children over time.
Prognoser i tvångsvårdsärenden om omsorgssvikt
This study set out to analyze how background-context, prognoses and evidence-based facts are referred to in child welfare investigations and judgments concerning coercive care of neglected children. The texts of social investigations and court judgments in 16 cases concerning parents (30) and their children (29) in two counties in Sweden were analyzed by a hermeneutic case study. All cases concerns section 2 in The Care of Young Persons (Special Provisions) Act (1990:52), which states that coercive care shall be decided if, due to neglect or some other situations, there is a "palpable risk of detriment" to the child's health or development. Theoretical framework of sociology of law and of normative legalism were used. The study shows that background-context, prognoses and evidence-based facts seldom are connected in the texts. Background-contexts quantitively dominates, while prognoses are vestigial and rarely enunciates as emanating from evidence-based facts. Instead of describing risk-assessments a plurality of the descriptions in the texts pictures the children as already harmed by neglect. The conclusion of the study is that the sociological conceptions of "a palpable risk" differ a great deal from the legal-theoretical interpretation of the concept.
Psychometric properties of KIDSCREEN-27 among childhood cancer survivors and age matched peers: a Rasch analy
There is a growing population of children and adolescents that have survived their cancer diagnosis. Therefore, it is of great importance to perform follow-up studies with relevant, valid and sensitive measures. It is of interest both to follow changes over time and to compare results from childhood cancer survivors with those from persons without this experience, to fully understand the impact and complexity of childhood cancer in regard to different aspects of quality of life. The aim of this study was to evaluate the psychometric properties of KIDCSREEN-27 for use with survivors of childhood cancer.
Methods
KIDSCREEN-27 consists of five dimensions measuring health-related quality of life (HRQoL) in children and adolescents; 63 survivors, (4–6 years post- diagnosis) aged 12–22 and 257 from a comparison group were assessed. KIDSCREEN-27 was evaluated using a Rasch Partial Credit Model (PCM). The aspects studied were the properties of the rating scale including threshold values, internal scale validity, unidimensionality, person response validity, and differential item functioning (DIF) comparing the survivors with peers.
Results
The rating scales revealed almost expected patterns of responses, and the threshold ordering for two of three rating scales displayed acceptable results. The items demonstrated acceptable goodness-of-fit MnSq values in 23 of 27 items (85.2%). The explained variance within each dimension was above the set criterion (50%) for all dimensions except Autonomy & Parent Relations (39.8%). Person goodness-of-fit showed acceptable results in four of five dimensions. No DIF was detected with regard to cancer experience (survivors/comparison group).
Conclusions
Based on the performed Rasch analysis, KIDSCREEN-27 is recommended, with the exception of Autonomy & Parent Relations, due to non-satisfactory unidimensionality, for use among adolescents and young adults who have survived childhood cancer. Still, it is recommended that future research should include a larger sample of childhood cancer survivors in order to monitor some items more thoroughly and explore different levels and patterns of HRQoL in KIDSCREEN-27.
Reciprocity and Social Capital in Sibling Relationships of People With Disabilities
Sibling relationships are some of the longest-lasting relationships people experience, providing ample opportunities to build connections across the life span. For siblings and people with intellectual and developmental disabilities (IDD), these connections take on an increased significance as their families age and parents can no longer provide care. This article presents findings from a qualitative study that addresses the question, "How do siblings support each other after parents no longer can provide care to the person with IDD?" Findings in this study suggest that siblings with and without disabilities experience reciprocity as a transitive exchange, which occurs through the creation of social capital in their families and community, and that nondisabled siblings mobilize their social capital to provide support to their sibling after parents pass away. Implications for future research as well as policy and practice are discussed.
Reciprocity in relationships and support between grandparents and grandchildren: An Icelandic example
This study explores and discusses the relationships between grandchildren and grandparents with an emphasis on the reciprocal, practical, emotional, and financial support that is provided between generations. Two independent surveys were conducted in Iceland, one of grandparents aged 65 years and older (n = 206) and one of grandchildren among college students (n = 648). The questions used were the same. The results indicated that there is a certain consistency in the pattern of views of the younger toward the older generation and the other way around. These findings are discussed in relation to family development and the value of intergenerational relationships and support.
Reconciling partner Care and Paid Work in Finland and Sweden
Registrering og oppfølging av barn som pårørende vedSørlandet sykehus
Research Design (International Student Edition) - Qualitative, Quantitative, and Mixed Methods Approaches. 4th ed.
The eagerly anticipated Fourth Edition of the title that pioneered the comparison of qualitative, quantitative, and mixed methods research design is here! For all three approaches, Creswell includes a preliminary consideration of philosophical assumptions, a review of the literature, an assessment of the use of theory in research approaches, and refl ections about the importance of writing and ethics in scholarly inquiry. He also presents the key elements of the research process, giving specifi c attention to each approach. The Fourth Edition includes extensively revised mixed methods coverage, increased coverage of ethical issues in research, and an expanded emphasis on worldview perspectives.
Respite Utilization and Responses to Loss Among Family Caregivers: Relationship Matters
Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children. The present study examined the longitudinal relationship between grief reactions in current spousal and adult-children caregivers (N = 72) and in-home respite utilization over 3 months. The Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory Short Form (S. J. Marwit & T. M. Meuser, 2005) was used to assess the grief experiences of participants, and demonstrated good internal reliability among spousal and adult-child caregivers of older adults with a variety of cognitive and physical conditions. Although there was not an association between spouses' grief subscale scores and later respite use, adult children were more likely to use respite after reporting higher levels of grief reactions. This study contributes to our ongoing understanding of differences between spousal and adult-children caregivers of impaired older adults and also lends further support for the reliability and construct validity of the Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory.
Riktade psykosociala insater till gravida och småbarnsföräldrar med problematiskt bruk av alkohol och narkotika: en litteraturstudie. Barn som anhöriga 2013:5.
I rapporten beskrivs resultaten från en litteraturstudie om riktade psykosociala
insatser till gravida och småbarnsföräldrar (med barn upp till 3 år) som har ett
så kallat problematiskt bruk av alkohol och/eller narkotika. Ovanstående grupper
är viktiga att uppmärksamma, dels för den inverkan det problematiska bruket
kan ha på föräldrarana själva, men framförallt på grund av de negativa effekter
detta kan få för föräldra-barnrelationen samt barnets psykiska hälsa och utveckling.
Syftet med litteraturstiden har varit att identifiera, sammanfatta och värdera
den internationella interventionsforskningen på området. Via sökningar i databaser
återfanns 53 relevanta primärstudier. Av dessa undersökte 27 studier interventioner
riktade till gravida, 14 studier fokuserade på insatser till småbarnsföräldrar,
medan 12 studier beskrev effekter av interventioner som påbörjats
under graviditet och avslutats en tid efter barnets födelse.
Sammantaget undersökte dessa studier ett flertal olika typer av interventioner.
Till de interventioner som studerades mest frekvent hörde bland annat hembesök,
behandlingsinsatser samordnade med mödravård samt insatser fokuserade
på föräldraträning/föräldraförmågor.
De aktuella studiernas sammanvägda resultat pekar dock mot att det råder
stor osäkerhet kring de olika insatstypernas effekter. Avsaknaden av enhetligt
vetenskapligt stöd innebär dock inte att stöd saknas helt; snarare drar de olika
studierna skilda slutsatser kring respektive insats. Därtill är många av studierna
alltför metodologiskt svaga för att det ska vara möjligt att uttala sig om effekter,
samt i vilken utsträckning dessa eventuellt kan vara bestående. En slutsats som
kan dras är därmed att det behövs fler experimentella studier med längre uppföljningstider
på området.
Ur ett svenskt perspektiv är det även angeläget med studier genomförda i en
svensk/nordisk kontext, då skillnaderna mellan länderna avseende tillgång till
mödra- och barnhälsovård begränsar möjligheterna att överföra resultat från
exempelvis amerikanska studier till svenska förhållanden.
Samspråk. Stöd i kommunikation tillsammans med barn med synnedsättning i kombination med ytterligare funktionsnedsättningar
Samtalets betydelse
Detta inspirationsmaterial om samtalets betydelse som anhörigstöd bygger på det material som kommit fram i två blandade lärande nätverks diskussioner och dokumentation under åren 2011 till 2013. Sammanlagt genomfördes sex träffar i respektive nätverk. Ur sammanställningarna, har olika teman och frågeställningar identifierats. Dessa teman utgör rubrikerna i detta inspirationsmaterial.
Searching for a Balance of Responsibilities: OECD Countries' Changing Elderly Assistance Policies
The rapid aging of OECD country populations and the now five-year-long financial crisis in Europe are causing many OECD countries to reconfigure their assistance programs for the elderly, particularly their long-term care (LTC) policies. Debates about intergenerational responsibilities are evident in recently published research papers that examine how countries are revising programs for the elderly. Building financial sustainability into program reforms has suddenly become a priority. Until just recently, reform efforts focused on creating efficiencies and better quality of services. What emerges from the recent literature is a strong sense that the OECD countries are responding to the financial crisis and the rapid aging of populations in very similar ways. Given the countries' different histories of how they provide assistance to their elderly citizens, the convergence of policy responses is not something we might have foreseen. The United States could learn much from the OECD countries' choices.
Severe multiple disabilities
Severe multiple disabilities
Socio-demographic determinants of caregiving in older adults of low- and middle-income countries
Background: caregivers make substantial contributions to health and social systems, but many low-resource settings lack reliable data about the determinants and experiences of older adults who are caregivers. Objective: we identified socio-demographic determinants of caregiving among older adults of low- and middle-income countries, and compared determinants of specific categories of caregiving tasks. Subjects: a total of 34,289 adults aged 60 or older from a pooled sample of 48 low- and middle-income countries. Methods: prevalence values for caregiving and categories of caregiving tasks were calculated according to socio-demographic variables, for the overall sample and for each study country. Multivariate analyses assessed associations between caregiving variables and socio-demographic determinants, adjusting for health score and country of residence. Results: overall, 15% of older adults provided care, with varying prevalence according to study country. The prevalence of caregiving was significantly higher in women, and among adults aged 60-69, the college educated, the wealthy, those living in a household of two people and urban residents. No prevalence differences were reported for the employment status or health score. The odds of caregiving were greater for women, younger age groups and higher education levels, controlling for confounders. The likelihood of participating in specific categories of caregiving differed by sex, age, marital status, education, employment status and household size, but was not associated with household economic status, area of residence or health score.
Som man frågar får man svar – om stöd till anhöriga
Sorg, saknad, sammanhang Böcker om barn och ungdomar i svåra livssituationer
I Sorg - Saknad - Sammanhang har Gunilla Brinck, bibliotekskonsulent vid Länsbiblioteket i Västerbotten, och Anna Lindberg, bibliotekarie på sjukhusbiblioteket vid Norrlands Universitetssjukhus Umeå, samlat och kommenterat ca 300 böcker, huvuddelen skönlitteratur, om barn och ungdomar i svåra livssituationer. Kati Falk, med 25 års erfarenhet av barnpsykiatri, de senaste 10 åren på BUP:s Kris- och Konsultteam i Lund, visar i en inledande artikel på samtalets betydelsefulla roll för att hjälpa barn att hantera det "svåra i livet".
Böckerna är grupperade under tre huvudrubriker:
1. Barn som anhöriga/närstående Förälders/syskons plötsliga död, Sjukdom som leder till döden, Att leva med sjukdom, Självmord m fl,
2. Barn och våld
3. Barn i sjukdom och kris med underrubriker som Att vistas på sjukhus/besöka vårdcentral, Att vara allvarligt sjuk, Psykisk sjukdom m fl.
Strengthening prospects for safe and lasting family reunification: can a Family Drug and Alcohol Court make a contribution?
This article examines the contribution of the first Family Drug and Alcohol Court (FDAC) within care proceedings in England and Wales. It asks what FDAC can contribute to family reunification amid concerns about the safety and sustainability of return home and significant changes in care proceedings under the Children and Families Bill of 2013. Features of FDAC as a problem-solving court are outlined and findings of an independent evaluation are presented to consider FDAC's contribution to safe return home at the end of the care proceedings. The likely impact of the Children and Families Bill of 2013 on FDAC's reunification objectives and the rationale for an FDAC aftercare service are discussed. The article concludes that FDAC has the potential to play a useful role in promoting safe reunification at the end of care proceedings. The Children and Families Bill of 2013 creates both opportunities and challenges to the FDAC model in respect of its approach to enhance safe reunification prospects, and adaptations will be necessary. There is a strong case to develop an FDAC aftercare service to help promote lasting reunification and safe and committed parenting.
Keywords:: FDAC, problem-solving courts, family reunification, substance misuse, care proceedings, Children and Families Bill 2013
Study Finds Wives often struggle With Stepchildren Over Caregiving
Stöd till personer som vårdar eller stödjer närstående – Lägesbeskrivning 2013
Sedan drygt fyra år tillbaka finns en bestämmelse i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, om att kommunerna ska erbjuda stöd till personer som vårdar och stödjer närstående. Stödet till anhöriga har under denna tid fått en tydligare struktur och integrerats i kommunernas planer och styrdokument. Utbudet av olika typer av stöd till anhöriga har ökat, och kommunerna har inrättat tjänster, förbättrat informationen om stödet och arbetar med att införa ett anhörigperspektiv i alla verksamheter. Detta är en generell bild av socialtjänstens sätt att tillämpa bestämmelsen i SoL. Inom äldreomsorgen bedömer kommunerna att de tillämpar bestämmelsen i stor utsträckning, men i funktionshindersverksamheten och individ- och familjeomsorgen anger två tredjedelar av kommunerna att de tillämpar bestämmelsen i liten utsträckning. Det finns vissa problem med att tillämpa bestämmelsen. Äldreomsorgen har svårt att hitta anhöriga att hjälpa och relativt många anhöriga tackar nej till hjälp. Det kan betyda att handläggarna inte utreder de anhörigas behov av stöd, men det kan också bero på brister i samarbetet mellan handläggarna, anhörigkonsulenten och verksamheterna när det gäller stöd till anhöriga. Funktionshindersverksamheten framhåller ofta att den fokuserar på brukaren i första hand. De flesta brukare får redan hjälp med stöd av LSS, lagen om stöd och service till vissa funktionshindrade (1993: 387), och därmed även deras anhöriga. Kommunerna har däremot svårt att nå hjälptagare som enbart har socialtjänstinsatser och deras anhöriga. På motsvarande sätt uppger individ- och familjeomsorgen att stödet till anhöriga är integrerat i klientarbetet och att bestämmelsen i SoL inte tillför det arbetet något. Den framhåller missbruksvården, där det finns ett stort utbud av stöd till makar, barn och andra familjemedlemmar. Individ- och familjeomsorgen beskriver däremot stora problem med att nå anhöriga till personer inom socialpsykiatrin. Får anhöriga stöd? I dag är det svårt att veta hur många anhöriga som får stöd eftersom detta bara är andra året som Socialstyrelsen samlar in uppgifter om serviceinsatser. Resultaten hittills pekar att olika former av anhörigstöd är en mycket omfattande verksamhet i kommunerna. Det saknas däremot underlag för att beskriva det stöd som ges till anhö-riga efter prövning enligt 4 kap. 1 § SoL. Med dagens dokumentation går det inte att ta fram dessa uppgifter i den officiella statistiken över social-tjänstens insatser. Det är därför angeläget att kunna beskriva biståndsprövade stödinsatser till anhöriga. Socialstyrelsen arbetar på uppdrag av regeringen med att utveckla socialtjänststatistiken och ta fram en plan för statistiken beträffande kommunernas anhörigstöd, hemsjukvård och insatser som inte är biståndsprövade. Hälso- och sjukvården och anhöriga Många anhöriga har långvarig kontakt med akutsjukvården, specialistsjukvården och inte minst primärvården, och därmed spelar sjukvården en viktig roll för både de sjuka och för deras anhöriga. Hittills har kommunerna dock inte lyckats etablera samarbete med hälso- och sjukvården i någon större utsträckning. Socialtjänstens kontakter och initiativ till samverkan leder sällan till ett systematiskt samarbete kring anhörigstödet. Det grundläggande problemet är att det saknas en struktur och rutiner för samarbetet mellan landstinget och socialtjänsten när det gäller stöd till anhöriga. I framtiden kommer dessutom hemsjukvården att vara ett kommunalt ansvar i hela landet, och därmed finns skäl till att utveckla hemsjukvårdens roll när det gäller stöd till anhöriga. Socialstyrelsens slutsatser Socialstyrelsen kan konstatera att lagstiftningen ännu inte har fått tillräckligt genomslag. Det krävs ytterligare arbete för att föra in ett anhörigperspektiv i socialtjänsten och i hälso- och sjukvården. Socialstyrelsens uppföljning visar att kommunerna behöver ytterligare vägledning i hur de ska tillämpa bestämmelsen i SoL. Kommunerna behöver fortsätta att utveckla formerna för bemötandet av anhöriga, utreda de anhörigas behov av stöd i de olika verksamheterna samt utveckla informationen om det stöd som finns att få och se till att den når fram. Hälso- och sjukvården behöver utveckla formerna för bemötande av anhöriga och att erbjuda dem stöd. Det är viktigt att hälso- och sjuk-vården och socialtjänsten samarbetar för den anhörigas och närstå-endes bästa. För att även inspirera hälso- och sjukvården i dess arbete med stöd till anhöriga kommer Socialstyrelsen att fortsätta att sammanställa exempel på hur sådant arbete har byggts upp runt om i landet. Socialstyrelsen kommer att stödja olika patient-, anhörig-, funktionshinders-, frivillig- och pensionärsorganisationers behov av information genom att ta fram en informationsskrift om bestämmelsen. Socialstyrelsen kommer under 2014 att genomföra olika informationsinsatser för att ge kommunerna ytterligare vägledning när det gäller att införa bestämmelsen om stöd till anhöriga.
Stöd till personer som vårdar eller stödjer närstående, Lägesbeskrivning 2013
Kommunernas tillämpning av bestämmelsen
Sedan drygt fyra år tillbaka finns en bestämmelse i 5 kap. 10 § socialtjänstlagen
(2001:453), SoL, om att kommunerna ska erbjuda stöd till personer
som vårdar och stödjer närstående. Stödet till anhöriga har under denna tid
fått en tydligare struktur och integrerats i kommunernas planer och styrdokument.
Utbudet av olika typer av stöd till anhöriga har ökat, och kommunerna
har inrättat tjänster, förbättrat informationen om stödet och arbetar
med att införa ett anhörigperspektiv i alla verksamheter.
Detta är en generell bild av socialtjänstens sätt att tillämpa bestämmelsen
i SoL. Inom äldreomsorgen bedömer kommunerna att de tillämpar bestämmelsen
i stor utsträckning, men i funktionshindersverksamheten och individoch
familjeomsorgen anger två tredjedelar av kommunerna att de tillämpar
bestämmelsen i liten utsträckning.
Det finns vissa problem med att tillämpa bestämmelsen. Äldreomsorgen
har svårt att hitta anhöriga att hjälpa och relativt många anhöriga tackar nej
till hjälp. Det kan betyda att handläggarna inte utreder de anhörigas behov
av stöd, men det kan också bero på brister i samarbetet mellan handläggarna,
anhörigkonsulenten och verksamheterna när det gäller stöd till anhöriga.
Funktionshindersverksamheten framhåller ofta att den fokuserar på brukaren
i första hand. De flesta brukare får redan hjälp med stöd av LSS, lagen
om stöd och service till vissa funktionshindrade (1993: 387), och därmed
även deras anhöriga. Kommunerna har däremot svårt att nå hjälptagare som
enbart har socialtjänstinsatser och deras anhöriga.
På motsvarande sätt uppger individ- och familjeomsorgen att stödet till
anhöriga är integrerat i klientarbetet och att bestämmelsen i SoL inte tillför
det arbetet något. Den framhåller missbruksvården, där det finns ett stort
utbud av stöd till makar, barn och andra familjemedlemmar. Individ- och
familjeomsorgen beskriver däremot stora problem med att nå anhöriga till
personer inom socialpsykiatrin.
Får anhöriga stöd?
I dag är det svårt att veta hur många anhöriga som får stöd eftersom detta
bara är andra året som Socialstyrelsen samlar in uppgifter om serviceinsatser.
Resultaten hittills pekar att olika former av anhörigstöd är en mycket
omfattande verksamhet i kommunerna.
Det saknas däremot underlag för att beskriva det stöd som ges till anhö-
riga efter prövning enligt 4 kap. 1 § SoL. Med dagens dokumentation går
det inte att ta fram dessa uppgifter i den officiella statistiken över socialtjänstens
insatser.
Det är därför angeläget att kunna beskriva biståndsprövade stödinsatser till
anhöriga. Socialstyrelsen arbetar på uppdrag av regeringen med att utveckla
socialtjänststatistiken och ta fram en plan för statistiken beträffande kom-
7
munernas anhörigstöd, hemsjukvård och insatser som inte är biståndsprö-
vade.
Hälso- och sjukvården och anhöriga
Många anhöriga har långvarig kontakt med akutsjukvården, specialistsjukvården
och inte minst primärvården, och därmed spelar sjukvården en viktig
roll för både de sjuka och för deras anhöriga. Hittills har kommunerna dock
inte lyckats etablera samarbete med hälso- och sjukvården i någon större
utsträckning. Socialtjänstens kontakter och initiativ till samverkan leder
sällan till ett systematiskt samarbete kring anhörigstödet.
Det grundläggande problemet är att det saknas en struktur och rutiner för
samarbetet mellan landstinget och socialtjänsten när det gäller stöd till anhö-
riga. I framtiden kommer dessutom hemsjukvården att vara ett kommunalt
ansvar i hela landet, och därmed finns skäl till att utveckla hemsjukvårdens
roll när det gäller stöd till anhöriga.
Socialstyrelsens slutsatser
Socialstyrelsen kan konstatera att lagstiftningen ännu inte har fått tillräckligt
genomslag. Det krävs ytterligare arbete för att föra in ett anhörigperspektiv i
socialtjänsten och i hälso- och sjukvården. Socialstyrelsens uppföljning visar
att kommunerna behöver ytterligare vägledning i hur de ska tillämpa
bestämmelsen i SoL.
• Kommunerna behöver fortsätta att utveckla formerna för bemötandet
av anhöriga, utreda de anhörigas behov av stöd i de olika verksamheterna
samt utveckla informationen om det stöd som finns att få och
se till att den når fram.
• Hälso- och sjukvården behöver utveckla formerna för bemötande av
anhöriga och att erbjuda dem stöd. Det är viktigt att hälso- och sjukvården
och socialtjänsten samarbetar för den anhörigas och närstå-
endes bästa.
• För att även inspirera hälso- och sjukvården i dess arbete med stöd
till anhöriga kommer Socialstyrelsen att fortsätta att sammanställa
exempel på hur sådant arbete har byggts upp runt om i landet.
• Socialstyrelsen kommer att stödja olika patient-, anhörig-, funktionshinders-,
frivillig- och pensionärsorganisationers behov av information
genom att ta fram en informationsskrift om bestämmelsen.
• Socialstyrelsen kommer under 2014 att genomföra olika informationsinsatser
för att ge kommunerna ytterligare vägledning när det
gäller att införa bestämmelsen om stöd till anhöriga.
Substance exposure in utero and developmental consequences in adolescence: A systematic review
BACKGROUND:
The impacts of maternal substance use have been observed in both research and clinical experience. Several studies have shown that preschool children are at heightened risk of developing various cognitive, behavioral, and socioemotional difficulties. Most knowledge has been generated concerning alcohol consumption during pregnancy and the postnatal effects thereof. Less is known about substance use other than alcohol (for instance, opiates, marijuana, and cocaine) during pregnancy and the long-term developmental consequences.
OBJECTIVE:
The aims of this review are to identify relevant published data on adolescents who have been exposed in utero to alcohol and/or other substances and to examine developmental consequences across functions and mental health at this point in life.
METHODS:
PubMed, Embase, and PsychInfo were searched for publications during the period of 1980-2011 and titles and abstracts selected according to prespecified broad criteria.
RESULTS:
Twenty-five studies fulfilled all of the specific requirements and were included in this review. Most research covered prenatal alcohol exposure. Other substances, however, included cocaine, marijuana, opiates, and poly-substances. Results showed that prenatal exposure to alcohol has long-term cognitive, behavioral, social, and emotional developmental consequences depending on amount and timing of exposure in utero. Less evidence exists for long-term consequences of exposure in utero to other substances than alcohol. However, recent brain-imaging studies have provided important evidence of serious effects of other substance exposure on the developing brain and recent follow-up studies have found an association with deficits in language, attention, areas of cognitive performance and delinquent behavior in adolescence.
Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study
The aim of this study was to explore how young (16-25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.
Systematik för säker evidens
I slutet av 2012 kom Socialstyrelsen ut
med rapporten Effekter av stöd till anhö
-
riga som vårdar äldre med demenssjukdom
eller sköra äldre – en systematisk översikt.
Syftet med översikten var att utvärdera effekter
av utbildningsprogram, psykosocialt
stöd och kombinationsprogram som ges till
anhöriga som vårdar sköra äldre eller äldre
med demenssjukdom. I översikten under
-
söktes enbart studier som mätt effekter både
för den anhöriga och för
den närstående sjuka.
Så väljer du rätt äldreomsorg. En guide för äldre och anhöriga
Så väljer du rätt äldreomsorg - en guide för äldre och anhöriga är en enkel och matnyttig guide för dig som funderar på hur du vill ha det när du blir äldre.
Boken ger dig tips och råd när du ska välja äldreomsorg - åt dig själv eller åt en närstående. Den är lätt att slå i och kan läsas från början till slut eller i valda delar beroende på dina behov eller önskemål. Vad finns det för olika slags hjälp att få? Vad har du för rättigheter och vad är rimligt att begära? Vad är viktigt att tänka på när du ska välja mellan olika utförare? Vad gör du som anhörig om du inte är nöjd med den vård som din närstående får? Dessa frågor och många fler besvaras i boken.
Precis som vi behöver information inför till exempel föräldraskap och skolstart behöver vi också vägledning inför ålderdomen. Det kan vara mycket att sätta sig in i, men med boken Så väljer du rätt äldreomsorg får du en bra översikt och en god förberedelse inför dina vägval.
Claes Björck är beteendevetare och konsult med lång erfarenhet som chef både inom den kommunala och inom den privata äldreomsorgen. Anna Bidö är frilansjournalist med många års erfarenhet av arbete som vårdbiträde inom äldreomsorgen.
Teknik för äldre II [Elektronisk resurs] : slutrapport
Teknik för äldre är ett regeringsuppdrag som samordnats av Hjälpmedelsinstitutet. Det har verkat sedan 2007 med en budget om 22 miljoner kronor årligen. Teknik för äldre har stöttat utvecklingen av bra produkter och tjänster som underlättar vardagen och boendet för äldre och anhöriga. Företag, organisationer och kommuner har kunnat ansöka om ekonomiskt stöd för att driva utvecklingsprojekt. 100 projekt har fått stöd inom Teknik för äldre I (2007-2009) och 61 projekt inom teknik för äldre II (2010-2012). Bidrag om sex miljoner kronor vardera har lämnats till kommunala försöksverksamheter i Göteborgs stad, Norrköpings kommun och Västerås stad. Inom Teknik för äldre II har projekt prioriterats som bidragit till tillgängligt boende, bättre stöd till anhöriga och utveckling av äldreomsorgen med hjälp av välfärdsteknologi. Informations- och kommunikationsinsatser har också varit i fokus.
Telecare for Older People: Promoting Independence, Participation, and Identity
Drawing on interviews with 76 older people (aged 60 years and older) receiving telecare services at home and in housing with care and 16 family caregivers in West Lothian, Scotland, the authors consider how far telecare can support older people's citizenship goals of independence, participation, and identity. They conclude that although these goals are to some extent supported by telecare, they are also supported by the model of care being applied and limited by aspects of the wider environment, such as ageism. The authors argue that in every case, contextual factors beyond the intrinsic capacities of a technological system and beyond the models of care developed and promoted by a service delivery organization must be explored if the impact of telecare is to be fully understood. Thus, the human use of technology and its moral context are critical to its success or limitation.
The iconicity of picture communication symbols for children with English additional language and mild intellectual disability
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 impacts of parental loss and adverse parenting on mental health: findings from the national comorbidity survey-replication
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 needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey
Background: Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives. Method: During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals' views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers' perspectives were gained for 125 people with dementia, and people with dementia's views on their own needs were obtained for 125 persons with dementia. Results: People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need. Conclusions: Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them.
The Perception of Meaningfulness and Performance of Instrumental Activities of Daily Living From the Perspectives of the Medically At-Risk Older Adults and Their Caregivers
The purpose of the study was to understand the impact of chronic disability on the functional ability of older adults. Thirty older adult participants and their caregivers were asked to identify which instrumental activities of daily living (IADL) are most meaningful and how their disability affected performance. Data collected through individual analysis indicated that the most important IADL tasks were driving and managing medication. Both older adult participants and their caregivers similarly perceived the health condition as significantly affecting the performance of all of the IADLs. However, there was a difference in the perception of the prior level of functioning for managing medication (z = 2.45, p = .024) and phone use (z = 2.26, p = .014). Results arrived at, and to be discussed, were in agreement with previous research findings indicating that complex tasks of daily living, particularly driving, are significant to the older adult's quality of life.
Migrant Populations Approaching Old Age. Prospects in Europe
Missbrukande föräldrar, utsatta barn och socialt arbete
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.
Morbidity and mortality among foreign-born Swedes
Det svenska samhället har under senare delen av 1900-talet påverkats och förändrats på grund av en ökad internationell migration. År 1950 var 2,8 % av den svenska befolkningen utrikesfödd; idag utgör de utrikesfödda 12,0 % av totalbefolkningen. Om även andragenerationens migranter (de som har en eller båda föräldrar utrikesfödda) räknas med utgör första och andragenerationens migranter tillsammans 20 % av Sveriges befolkning. Tidigare studier har visat att migration kan påverka hälsa och hälsoutveckling på både positiva och negativa sätt. Ett accepterat sätt att mäta hälsa och hälsoutveckling är att studera morbiditet och mortalitet i en befolkning. Ett fåtal studier har återfunnits som har undersökt morbiditet och mortalitet bland migranter. Ingen av dessa har haft en longitudinell design och undersökt en total population av migranter i ett land. Det övergripande syftet var att beskriva och jämföra hälsa och hälsoutveckling över tid mellan svenskfödda och utrikesfödda och genom detta att studera migrationens påverkan på hälsa. De fyra i avhandlingen ingående delarbetena bygger på analys av data från Statistiska Centralbyrån och Socialstyrelsens Centrum för Epidemiologi. I databasen har ingått samtliga utrikesfödda, 16 eller äldre som fanns i Sverige 1970. Till varje utrikesfödd person finns en svensk kontroll matchad vad gäller kön, ålder, sysselsättning, yrke och bosättningslän. För 20 518 utrikesfödda personer kunde inte en kontroll skapas på grund av matchningskriterierna; dessutom exkluderades de personer som under den studerade tiden (1970?1999) hade emigrerat från Sverige. Totalt kom databasen som användes för analys att omfatta 723 948 personer, 50 % utrikesfödda och 50 % svenska kontroller. Den första delstudiens syfte var att beskriva och jämföra mortalitet mellan utrikesfödda och svenskfödda under perioden 1970?1999. Resultaten visade en generellt högre dödlighet bland utrikesfödda (OR 1,08) och en lägre medelålder vid tidpunkten för dödsfallet. Speciellt hög mortalitetsrisk återfanns bland män från Finland (OR 1,21), Danmark (OR 1,11) och Norge/Island (OR 1,07). Två ålderskohorter jämfördes, personer födda 1901?1920 respektive personer födda 1921?1944, och analysen visade en högre mortalitet för personer i den äldsta ålderskohorten. Personer som hade invandrat ?sent? till Sverige visade större skillnader i medelålder vid död än de som hade invandrat ?tidigt?; personer som kommit till Sverige under perioden 1941?1970 hade en 2,5 år lägre medelålder vid tiden för dödsfallet. Syftet för den andra delstudien var beskriva, jämföra och analysera dödsorsaksmönster bland utrikesfödda och svenskfödda under perioden 1970?1999. Studiens resultat visade ett större antal avlidna i sex olika ICD-huvuddiagnosgrupper och en lägre medelålder vid tiden för dödsfallet bland utrikesfödda. Födelselandet hade betydelse för dödsorsaksmönstret. Vid jämförelse med de svenska kontrollerna återfanns bland migranter från Danmark ett större antal avlidna i diagnosgruppen ?Neoplasm?, bland migranter från Finland och Polen var skillnaden stor i gruppen ?Diseases of the circulatory system? och personer från tidigare Jugoslavien särskilde sig mot kontrollerna framför allt med ett större antal avlidna i gruppen ?Symptoms, signs and ill-defined conditions?. Över tid fanns en tendens till en utjämning av skillnaderna i diagnosmönstret mellan utrikesfödda och svenskfödda. Då de två tidigare studierna hade visat på skillnader i mortalitet och morbiditet mellan utrikesfödda och svenskfödda kom den tredje studien att som syfte ha att beskriva, jämföra och analysera konsumtion av hälso- och sjukvård i fyra olika ICD-diagnosgrupper. Som mått på sjukvårdskonsumtion användes antal inläggningar på sjukhus, totalt antal vårddagar och vårddagar under de två sista inläggningstillfällena på sjukhus bland avlidna utrikesfödda och svenskfödda 1987?1999. Resultatet visade en tendens till mindre sjukvårdskonsumtion bland utrikesfödda, särskild vad gäller utrikesfödda män. Mindre sjukvårdskonsumtion för utrikesfödda återfanns i två av de fyra använda diagnosgrupperna (?Symptoms, signs and ill-defined conditions? och ?Injury and poisoning ?). Att vara utrikesfödd, justerat för ålder, var en oberoende bestämmande faktor för inläggning på sjukhus. Den nollhypotes som formulerats vid studiens start, att skillnader mellan utrikesfödda och svenskfödda beträffande sjukvårdkonsumtion inte fanns, kunde tillbakavisas. Det sista delarbetets syfte var att beskriva och jämföra skillnader i mortalitet i olika landsting mellan utrikesfödda och svenskfödda med en formulerad nollhypotes att inga mortalitetsskillnader fanns mellan olika landsting. Studiens resultat kunde tillbakavisa nollhypotesen, det fanns skillnader i mortalitet mellan utrikesfödda och svenskfödda framför allt i de län som kunde karaktäriseras som mera ?landsbygds?-dominerade. Landsbygdsdominerade län hade också gemensamt att deras populationer av migranter var förhållandevis små. Medelåldern vid tiden för avlidande var för män mellan 1,0?4,3 år lägre för utrikesfödda personer. Resultaten av de i avhandlingen ingående fyra olika studierna visar högre dödlighet, annorlunda sjukdomsmönster och tendens till lägre konsumtion av vård bland utrikesfödda än bland svenskfödda personer under perioden 1970?1999. Flera faktorer, såsom ekonomisk situation, arbete, arbetsmiljö, arbetslöshet, sociala nätverk och situationen före migrationen kan ha påverkat de utrikesföddas sämre hälsoläge. Den fysiska och sociala miljön och eventuella ojämlikheter i sjukvårdsresurser och tillgång till vård spelar också en viktig roll. Migrationen har haft en negativ inverkan på de utrikesföddas hälsa och är en viktig faktor att ta hänsyn till vid studier av hälsa och hälsoutveckling bland befolkningen i ett land
På andras villkor – skolans möte med elever med funktionshinder
I studien undersöks och analyseras vad som är väsentligt för tillgängligheten i grund- och gymnasieskolan och vad som kan ses som hindrande. Slutsatserna handlar inte i första hand om de tekniska och materiella lösningarna utan snarare om sådant som kan sammanfattas i kompetens, kreativitet och professionalism. Sådant som bidrar till att göra eleverna delaktiga i sin egenutveckling.
Quality of Care in the Psychiatric Setting: Perspective of the Patient, Next of Kin and Care staff
The overall aim of this thesis was to describe quality of care from different perspectives in the psychiatric setting, to develop an instrument for measuring quality of care from the in-patient perspective and to use this instrument empirically. A qualitative descriptive design involving a phenomenographic analysis was used in Studies I, III and IV, and a descriptive and comparative design with statistical analysis in Study II.In Study I, 20 patients were interviewed. The results showed that quality of care was perceived as a positive, normative concept namely as good quality of care. Five descriptive categories emerged: the patient's Dignity is respected; the patient's sense of Security with regard to care; the patient's Participation in care; the patient's Recovery; and the patient's care Environment. In addition, two conceptions that had not explicitly emerged in previous studies on quality of care were identified: Being helped to reduce the shame and Being looked upon as like anyone else.In Study II a definition of quality of care from a patient perspective was formulated on the basis of the results in Study I. A two-part instrument the Quality in Psychiatric Care (QPC) was developed for measuring the patients' expectations regarding quality of care (QPC-1) and their subsequent experience of it (QPC-2). One hundred and sixteen patients answered both parts of the instrument. Overall, the quality of care was rated high in both parts. However, experienced quality of care was significantly lower than the patient's expectations in all the dimensions of the instrument: Total dimension, Dignity, Security, Participation, Recovery and Environment. Patients who perceived that the time of discharge was consistent with the stage of their illness experienced significantly higher Recovery; patients with good psychiatric health also experienced this, but had in addition significantly higher levels of Participation. This new instrument exhibited too high Cronbach's alpha values (QPC-1 0.87–0.98, QPC-2 0.85–0.98), which means the instrument needs to be further tested in order to improve its psychometric properties.Twelve next of kin were interviewed in Study III. The next of kin described quality of care mainly from their own perspective, but also to a large extent from the patient's perspective as well. They described it in both positive and negative terms. Five descriptive categories resulted: Dignity, Security, Participation, Recovery and Health-promoting surroundings. Good relations and communication between staff, patients and next of kin emerged as the central factors regarding the quality of care. The next of kin asked for information about mental illnesses and wanted to co-operate and participate in the patient's care. They avoided telling others about their family member's psychiatric illness because of a feeling of shame and guilt.In Study IV, 20 care staff and care associates were interviewed. They described quality of care both from the patient's perspective and from a professional perspective. They perceived the concept as a positive one and as being of great importance for the patient's health and life situation. Four descriptive categories resulted: the patient's Dignity is respected; the patient's Participation in the care; the patient's Recovery; and the patient's care Environment plays an important role.The main contribution of this thesis with regard to the concept of quality of care in the psychiatric setting is its emphasis on the significance of the different perspectives described above, as such knowledge is vital when planning and implementing and evaluating quality of psychiatric care. In addition, the descriptive categories that emerged in this thesis clearly highlight the importance of interpersonal relationships in the care situation. The new instrument (QPC) needs psychometric testing before it routinely can be used as a self-rating instrument for the purpose of improving psychiatric inpatient care and help guide the proper allocation of care resources.
Randomized trial of parent management training in children with tic disorders and disruptive behavior. Journal of child neurology
Oppositional, defiant, and disruptive behaviors are common in clinical samples of children with tic disorders. In this study, we sought to evaluate the short-term efficacy of a structured parent training program in children with tic disorders accompanied by disruptive behavior. Children with tic disorders and at least a moderate level of disruptive behavior were randomly assigned to a 10-session structured parent management training program or to continue treatment as usual. Twenty-four children (18 boys and 6 girls) between the ages of 6 and 12 years (mean 8.9 +/- 2.0 years) were enrolled; 23 subjects completed the study. At baseline, subjects showed moderate to severe levels of oppositional and defiant behavior. Twenty subjects (83%) were on stable medication. The parent-rated Disruptive Behavior Rating Scale score decreased by 51% in the parent management training group compared with a decrease of 19% in the treatment as usual group (P < .05). On the Improvement scale of the Clinical Global Impression, a rater masked to treatment assignment classified 7 of 11 subjects who completed parent management training as much improved or very much improved compared with 2 of 12 subjects in the treatment as usual group (Fisher exact test, P < .05). These results suggest that parent management training is helpful for short-term improvement in disruptive behavior problems in children with tic disorders. Larger randomized clinical trials are needed.
Reducing Conduct Problems Among Children Brought to Women’s Shelters: Intervention Effects 24 Months Following Termination of Services
This study evaluated the long-term effects of Project SUPPORT, an intervention designed to reduce conduct problems among children in domestically violent families. Participating mothers had sought shelter because of domestic violence and had at least one child (4-9 years old) exhibiting clinical levels of conduct problems. Results indicated that at 2 years posttreatment, 15% of children in families in the Project SUPPORT condition exhibited clinical levels of conduct problems compared with 53% of those in the existing services condition. In addition, mothers of children in the Project SUPPORT condition reported their children to be happier, to have better social relationships, and to have lower levels of internalizing problems, relative to children in the comparison condition. Mothers in the Project SUPPORT condition were less likely to use aggressive child management strategies and were less likely to have returned to their partners during the follow-up period.
Relations between parent and adolescent problems among adolescents presenting for family-based marijuana abuse treatment
Family-based treatments for adolescent substance abuse demonstrate efficacy and are becoming a treatment of choice. Family risk factors for substance abuse may present barriers to or suggest targets for modification during treatment. The sample included 149 adolescents presenting for substance abuse treatment and their parents. Structural equation modeling tested the hypothesis that parent psychological problems, parent substance use, and parenting behaviors influence adolescent psychological problems and substance use. This study is among the first to examine the unique impact of maternal and paternal variables on adolescent problems within one analytical model. Results indicated that parental psychological problems were directly associated with adolescent psychological problems after controlling for parent substance use and parenting behaviors. Paternal positive involvement and poor monitoring were also independently associated with adolescent substance use. Results suggest that both mothers' and fathers' symptoms of psychopathology play an important role in the symptoms of adolescents in treatment for substance abuse. Findings highlight the need for family-based assessment in adolescent treatment populations to address important clinical and research questions.
Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents
Objective: To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents. Subjects: A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability. Method: A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes. Results: Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect. Conclusions: Findings delineate the key impacts of young caregiving and support a stress and coping model of adjustment in children of a parent with multiple sclerosis.
Relations between social support, appraisal, and coping and both positive and negative outcomes for children of a parent with MS and comparisons with children of a parent with MS and comparisons with children of healthy parents
Abstract
OBJECTIVE:
To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents.
SUBJECTS:
A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability.
METHOD:
A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes.
RESULTS:
Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect.
Relatives in and-of-life care part 1: a systematic review of the literature the five last years, January 1999 - February 2004
Risk and resilience. Adaptation in changing times
What factors enable individuals to overcome adverse childhoods and move on to rewarding lives in adulthood? Drawing on data collected from two of Britain's richest research resources for the study of human development, the 1958 National Child Development Study and the 1970 British Cohort Study, this 2006 book investigates the phenomenon of 'resilience' - the ability to adjust positively to adverse conditions. Comparing the experiences of over 30,000 individuals born twelve years apart, Schoon examines the transition from childhood into adulthood and the assumption of work and family related roles among individuals born in 1958 and 1970 respectively. The study focuses on academic attainment among high and low risk individuals, but also considers behavioural adjustment, health and psychological well-being, as well as the stability of adjustment patterns in times of social change. This is a major work of reference and synthesis, that makes an important contribution to the study of lifelong development.
Risk factors for preschool depression: the mediating role of early stressful life events.
Background: Family history of mood disorders and stressful life events are both established risk factors for childhood depression. However, the role of mediators in risk trajectories, which are potential targets for intervention, remains understudied. To date, there have been no investigations of mediating relationships between risk factors and very early onset depression, a developmental period during which intervention may be more effective. The current study used regression analyses to examine the relationships between family history of mood disorders and stressful life events as risk factors for depression in a preschool sample.
Method: Preschoolers 3.0 to 5.6 years of age participated in a comprehensive mental health assessment. Caregivers were interviewed about their children using a structured diagnostic measure to derive DSM-IV major depressive disorder (MDD) diagnoses and dimensional depression severity scores. Family history of psychiatric disorders and preschoolers' stressful life events was obtained.
Results: Both family history and stressful life events predicted depression severity scores 6 months later. Analyses examining the influence of family history of mood disorders and stressful life events on preschoolers' depression severity demonstrated that stressful life events mediated the relationship between family history and preschoolers' depression.
Conclusions: Findings outline the key role of exposure to early stressful life events as a mediator of familial mood disorder risk in preschool onset depression. This finding in a preschool sample provides support for the hypothesis that psychosocial factors may have increased importance as mediators of risk in younger age groups. Findings suggest that psychosocial factors should be considered key targets for early intervention in depression.
Sammanfattning av SBU:s rapport om: Demenssjukdomar En systematisk översikt
Sjuksköterskors inställning till familjers betydelse i omvårdnaden : En nationell studie (Rapport från institutionen för hälso- och beteendevetenskap, Högskolan i Kalmar, 2006:2).
Speech, language and aided communication: connections and questions in a developmental context
PURPOSE:
This discussion paper focuses on four potential complexities in the language development of children with severe congenital speech impairments, who use graphic symbols as a primary means of expression.
METHOD:
Some of the literature in relation to language development in aided communication is reviewed.
RESULTS:
Four potentially significant connections are discussed, relating to: (i) the features of graphic symbols; (ii) the complexity of multi-modal communication; (iii) the impact of selection and production on the process of developing a language system; and (iv), the connection between development and learning.
CONCLUSIONS:
It is proposed that the connections outlined are of fundamental significance in guiding intervention planning and in supporting language development in ways that have theoretical coherence.
Speech, language and aided communication: connections and questions in a developmental context
Abstract
PURPOSE:
This discussion paper focuses on four potential complexities in the language development of children with severe congenital speech impairments, who use graphic symbols as a primary means of expression.
METHOD:
Some of the literature in relation to language development in aided communication is reviewed.
RESULTS:
Four potentially significant connections are discussed, relating to: (i) the features of graphic symbols; (ii) the complexity of multi-modal communication; (iii) the impact of selection and production on the process of developing a language system; and (iv), the connection between development and learning.
CONCLUSIONS:
It is proposed that the connections outlined are of fundamental significance in guiding intervention planning and in supporting language development in ways that have theoretical coherence.
Standing guard - Being a relative to a hospitalised, elderly person
Caregiving relatives continue to feel primarily responsible for the care and well-being of elderly persons, when they are admitted to hospital. Although involvement of relatives in decision-making is rare, and the hospitalisation therefore may be a frustrating experience, little is known of relatives' experience of the hospitalisation of elderly persons from a life-world perspective. In this phenomenological study, hospital admission was a time of crisis and possible transition for the relatives, and the encounter with the professional system added to the relatives' emotional and physical burden. They felt responsible for protecting the elderly person and ensuring they received sufficient care. The history of the relationship and care was the frame of reference in which the hospital stay of the elderly person was reflected and understood. Feelings, roles and experiences were brought into the hospital setting and formed the basis for the relatives' expectations, values and conducts there.
Keywords
Relatives; Family attitudes; Family role; Family relations; Aged hospitalised; Elderly; Caregivers psychosocial factors; Adult children; Aging parents; Decision making; Professional–family relations; Collaboration; Lived experience; Phenomenology
Standing guard - Being a relative to a hospitalised, elderly person
Caregiving relatives continue to feel primarily responsible for the care and well-being of elderly persons, when they are admitted to hospital. Although involvement of relatives in decision-making is rare, and the hospitalisation therefore may be a frustrating experience, little is known of relatives' experience of the hospitalisation of elderly persons from a life-world perspective. In this phenomenological study, hospital admission was a time of crisis and possible transition for the relatives, and the encounter with the professional system added to the relatives' emotional and physical burden. They felt responsible for protecting the elderly person and ensuring they received sufficient care. The history of the relationship and care was the frame of reference in which the hospital stay of the elderly person was reflected and understood. Feelings, roles and experiences were brought into the hospital setting and formed the basis for the relatives' expectations, values and conducts there.
Keywords
Relatives; Family attitudes; Family role; Family relations; Aged hospitalised; Elderly; Caregivers psychosocial factors; Adult children; Aging parents; Decision making; Professional–family relations; Collaboration; Lived experience; Phenomenology
Standing guard -- being a relative to a hospitalised, elderly person.
Stress and well-being among parents of children with rare diseases: a prospective interventions study.
This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention.
BACKGROUND:
Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders.
METHOD:
We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability.
RESULTS:
We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network.
CONCLUSION:
Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.
Stressors, quality of the child-caregiver relationship, and children’s mental health problems after parental death: the mediating role of self-system beliefs
Abstract
Investigated whether three self-system beliefs, fear of abandonment, coping efficacy, and self-esteem, mediated the relations of stressors and caregiver-child relationship quality with concurrent and prospective internalizing and externalizing problems in a sample of children who had experienced parental death in the previous 2.5 years. The cross-sectional sample consisted of 340 children ages 7-16 and their surviving parent/current caregiver; the longitudinal analyses employed a subset of this sample that consisted of 100 children and their parents/caregivers who were assessed at three time points. A multirater, multimethod measure of caregiver-child relationship quality and a multirater measure of children's mental health problems were used. The cross-sectional model supported a mediational relation for fear of abandonment, coping efficacy, and self-esteem. The three-wave longitudinal model showed that fear of abandonment at Time 2 mediated the relation between stressors at Time 1 and internalizing and externalizing problems at Time 3. Implications of these findings for understanding the development of mental health problems in parentally bereaved children and designing interventions for this at-risk group are discussed.
Stöd till närstående lättar deras börda : Månadens forskare
Suicide attempts and severe psychiatric morbidity among former child welfare clients – a national cohort study
BACKGROUND:
Few large sample studies have examined psychiatric morbidity among former child welfare/protection clients. In this study, risks for suicide attempts and severe psychiatric morbidity in younger years were assessed for former child welfare clients in ten national birth cohorts, comparing them with general population peers and inter-country adoptees.
METHODS:
We used national register data for almost one million people: 22,305 former child welfare clients who had experienced interventions before their teens, 955,326 general population cohort peers and 12,240 inter-country adoptees. Multivariate Cox regression models were used to estimate risks of hospitalisation for suicide attempts and psychiatric disorders from age 13 to age 18-27.
RESULTS:
Former child welfare clients were in year of birth and sex standardised risk ratios (RRs) four to five times more likely than peers in the general population to have been hospitalised for suicide attempts. They were five to eight times more likely to have been hospitalised for serious psychiatric disorders in their teens, four to six times in young adulthood. High excess risks were also found for psychoses and depression. Individuals who had been in long-term foster care tended to have the most dismal outcome. Adjusting for birth parents' hospitalisations with a psychiatric diagnosis or for substance abuse, and for birth-home-related socio-economic factors, reduced excess risks to around twofold.
CONCLUSIONS:
Irrespective of issues of causality, findings suggest that former child welfare/protection clients should be considered a high-risk group for suicide attempts and severe psychiatric morbidity. Results have substantial practice implications for mental health and social agencies serving this group in adolescence and/or young adulthood.
Suicide attempts and severe psychiatric morbidity among former child welfare clients- A national cohort study
Abstract
BACKGROUND:
Few large sample studies have examined psychiatric morbidity among former child welfare/protection clients. In this study, risks for suicide attempts and severe psychiatric morbidity in younger years were assessed for former child welfare clients in ten national birth cohorts, comparing them with general population peers and inter-country adoptees.
METHODS:
We used national register data for almost one million people: 22,305 former child welfare clients who had experienced interventions before their teens, 955,326 general population cohort peers and 12,240 inter-country adoptees. Multivariate Cox regression models were used to estimate risks of hospitalisation for suicide attempts and psychiatric disorders from age 13 to age 18-27.
RESULTS:
Former child welfare clients were in year of birth and sex standardised risk ratios (RRs) four to five times more likely than peers in the general population to have been hospitalised for suicide attempts. They were five to eight times more likely to have been hospitalised for serious psychiatric disorders in their teens, four to six times in young adulthood. High excess risks were also found for psychoses and depression. Individuals who had been in long-term foster care tended to have the most dismal outcome. Adjusting for birth parents' hospitalisations with a psychiatric diagnosis or for substance abuse, and for birth-home-related socio-economic factors, reduced excess risks to around twofold.
CONCLUSIONS:
Irrespective of issues of causality, findings suggest that former child welfare/protection clients should be considered a high-risk group for suicide attempts and severe psychiatric morbidity. Results have substantial practice implications for mental health and social agencies serving this group in adolescence and/or young adulthood.
Symptoms of internalizing and externalizing problems: modeling recovery curves after the death of a parent
Abstract
BACKGROUND:
The death of a parent is a major family disruption that can place children at risk for later depression and other mental health problems.
DESIGN:
Theoretically based randomized controlled trial for parentally bereaved children.
SETTING/PARTICIPANTS:
Two-hundred and forty-four children and adolescents and their caregivers from 156 families were randomly assigned to the Family Bereavement Program (FBP) intervention condition (90 families; 135 children) or to a control condition (66 families; 109 children). Data collection occurred from 1996 to 1998.
INTERVENTION:
Children and caregivers in the intervention condition met separately for 12 two-hour weekly sessions. Skills targeted by the program for children included positive coping, stress appraisals, control beliefs, and self-esteem. The caregiver program targeted caregiver mental health, life stressors, and improved discipline in the home. Both child and caregiver programs focused on improved quality of the caregiver-child relationship.
MAIN OUTCOME MEASURES:
Child and caregiver reports of internalizing and externalizing symptoms.
RESULTS:
Longitudinal growth curve modeling was performed to model symptoms over time from the point of parental death. The rate of recovery for girls in the program condition was significantly different from that of girls in the control condition across all outcomes. Boys in both conditions showed reduced symptoms over time.
CONCLUSIONS:
The methodology offers a conceptually unique way of assessing recovery in terms of reduced mental health problems over time after an event and has contributed to further understanding of FBP intervention effects. The intervention program facilitated recovery among girls, who did not show reduction in behavior problems without the program, while boys demonstrated decreased symptoms even without intervention.
Symptoms of internalizing and externalizing problems: modeling recovery curves after the death of a parent
Abstract
BACKGROUND:
The death of a parent is a major family disruption that can place children at risk for later depression and other mental health problems.
DESIGN:
Theoretically based randomized controlled trial for parentally bereaved children.
SETTING/PARTICIPANTS:
Two-hundred and forty-four children and adolescents and their caregivers from 156 families were randomly assigned to the Family Bereavement Program (FBP) intervention condition (90 families; 135 children) or to a control condition (66 families; 109 children). Data collection occurred from 1996 to 1998.
INTERVENTION:
Children and caregivers in the intervention condition met separately for 12 two-hour weekly sessions. Skills targeted by the program for children included positive coping, stress appraisals, control beliefs, and self-esteem. The caregiver program targeted caregiver mental health, life stressors, and improved discipline in the home. Both child and caregiver programs focused on improved quality of the caregiver-child relationship.
MAIN OUTCOME MEASURES:
Child and caregiver reports of internalizing and externalizing symptoms.
RESULTS:
Longitudinal growth curve modeling was performed to model symptoms over time from the point of parental death. The rate of recovery for girls in the program condition was significantly different from that of girls in the control condition across all outcomes. Boys in both conditions showed reduced symptoms over time.
CONCLUSIONS:
The methodology offers a conceptually unique way of assessing recovery in terms of reduced mental health problems over time after an event and has contributed to further understanding of FBP intervention effects. The intervention program facilitated recovery among girls, who did not show reduction in behavior problems without the program, while boys demonstrated decreased symptoms even without intervention.
Så länge jag minns finns du. En minnesbok för barn
En minnesbok för barn som förlorat en förälder, ett syskon eller någon annan närstående.
I boken finns frågor att skriva svar på, och svaren blir en hjälp att minnas. Här finns också plats att rita bilder och klistra in foton. Och många värdefulla tips, till exempel om att prata med andra som kände den saknade och kanske be någon av dem att skriva något.
Att arbeta med boken innebär att arbeta med sina minnen - både glada och svåra - och sin sorg över den man saknar. Boken innehåller texter och illustrationer från personer som själva förlorat någon närstående, t ex Barbro Lindgren, Pernilla Stalfelt och Ilon Wikland.
The Effective Family Program: Preventative Services for the Children of Mentally Ill Parents in Finland
The Effective Family Programme was initiated in Finland in 2001 to provide methods for health and social services to support families and children of mentally ill parents. The methods are implemented and clinicians are trained in psychiatric services and primary health care. The methods include the Beardslee Preventive Family Intervention, a parent-focused Let's Talk about Children Discussion and the Network Meeting. The Effective Family Programme represents large-scale implementation of a promotive and preventative child-centred approach in adult psychiatry. The first five years have been successful. Two thirds of health districts have initiated training. However, big challenges lie ahead. While the work was initiated in psychiatric services, it needs to be extended to primary health care and social services as well. Institutionalisation of the methods is still in progress, as well as incorporation of the work into the basic training of all mental health professionals.
The Effective Family Programme
The enduring effects of abuse and related adverse experiences in childhood: A convergence of evidence from neurobiology and epidemiology
The enduring effects of abuse and related adverse experiences in childhood. A convergence of evidence from neurobiology and epidemiology .
Anda R.F., Felitti V.J., Bremner J.D., Walker J.D., Whitfield C., Perry B.D., Dube S.R. & Giles W.H. ( 2005 ) European Archives of Psychiatry and Clinical Neuroscience , ePub, posted online 29 November 2005 .
Background Childhood maltreatment has been linked to a variety of changes in brain structure and function and stress–responsive neurobiological systems. Epidemiological studies have documented the impact of childhood maltreatment on health and emotional well-being.
Methods After a brief review of the neurobiology of childhood trauma, we use the Adverse Childhood Experiences (ACE) Study as an epidemiological 'case example' of the convergence between epidemiological and neurobiological evidence of the effects of childhood trauma. The ACE Study included 17 337 adult HMO (Health Maintenance Organization) members and assessed eight adverse childhood experiences (ACEs) including abuse, witnessing domestic violence, and serious household dysfunction. We used the number of ACEs (ACE score) as a measure of cumulative childhood stress and hypothesized a 'dose–response' relationship of the ACE score to 18 selected outcomes and to the total number of these outcomes (comorbidity).
Results Based upon logistic regression analysis, the risk of every outcome in the affective, somatic, substance abuse, memory, sexual, and aggression-related domains increased in a graded fashion as the ACE score increased (P < 0.001). The mean number of comorbid outcomes tripled across the range of the ACE score.
Conclusions The graded relationship of the ACE score to 18 different outcomes in multiple domains theoretically parallels the cumulative exposure of the developing brain to the stress response with resulting impairment in multiple brain structures and functions.
The enduring effects of abuse and related adverse experiences in childhood: A convergence of evidence from neurobiology and epidemiology
Background
Childhood maltreatment has been linked to a variety of changes in brain structure and function and stress-responsive neurobiological systems. Epidemiological studies have documented the impact of childhood maltreatment on health and emotional well-being.
Methods
After a brief review of the neurobiology of childhood trauma, we use the Adverse Childhood Experiences (ACE) Study as an epidemiological "case example" of the convergence between epidemiologic and neurobiological evidence of the effects of childhood trauma. The ACE Study included 17,337 adult HMO members and assessed 8 adverse childhood experiences (ACEs) including abuse, witnessing domestic violence, and serious household dysfunction. We used the number of ACEs (ACE score) as a measure of cumulative childhood stress and hypothesized a "dose-response" relationship of the ACE score to 18 selected outcomes and to the total number of these outcomes (comorbidity).
Results
Based upon logistic regression analysis, the risk of every outcome in the affective, somatic, substance abuse, memory, sexual, and aggression-related domains increased in a graded fashion as the ACE score increased (P < 0.001). The mean number of comorbid outcomes tripled across the range of the ACE score.
Conclusions
The graded relationship of the ACE score to 18 different outcomes in multiple domains theoretically parallels the cumulative exposure of the developing brain to the stress response with resulting impairment in multiple brain structures and functions.
The Enhancing Connections Program: Pilot study of a cognitive behavioral intervention for mothers and children affected by breast cancer
In 2005, approximately 211,240 women in the US will be diagnosed with early stage breast cancer and an estimated 22% will be child rearing. Research reveals that both mothers and children have elevated distress attributed to the cancer; struggle with how to talk about and deal with the impact of the cancer; and both fear the mother will die. The Enhancing Connections Program (EC) was developed to reduce this cancer-related distress and morbidity. The program involves five, 1-hour educational counseling sessions delivered at 2-week intervals by specially trained clinicians. This study reports on the program's short-term impact on mothers' and children's adjustment. Thirteen households were recruited within 7.5 months of the mother's diagnosis with early stage breast cancer. Impact was evaluated within a single group design using data obtained from standardized questionnaires with established reliability and validity. Results revealed significant improvements in the mother's depressed mood, anxiety, and self-confidence to assist her child (mother report). There were also significant decreases in the child's behavioral problems (mother and father report); the child's cancer-related worries (child report); and the child's anxiety/depressed mood (mother and father report). Further evaluation is warranted within a clinical trial.
The important support - to give and receive
The kaleidoscope of communication: Different perspectives on communication involving children with severe multiple disabilities.
Avhandlingen består av sex publikationer om kommunikation och grava funktionsnedsättningar. Publikationerna presenterar ett teoretiskt ramverk, metodförslag och empiriska studier. Det teoretiska ramverket gäller generella aspekter på kommunikation och funktionsnedsättning medan de empiriska studierna fokuserar på barn i förskoleåldern vilka har utvecklingsstörning kombinerat med synnedsättning och/eller rörelsehinder. Syftet med avhandlingen är att samla kunskaper om hur barnen kommunicerar med sina vårdgivare, att analysera hur olika forskningsstrategier kan tillföra kunskaper från olika perspektiv och att utveckla modeller för att analysera och beskriva den dyadiska interaktionen.
Den teoretiska ramen tar upp hur barnets kommunikativa utveckling påverkas av multipla funktionsnedsättningar men också kommunikationspartners roll och vad som är betydelsefullt i åtgärdsarbetet. Den metodologiska ramen presenterar och jämför olika forskningsansatser och ett nytt sätt att studera och analysera kommunikation baserat på systemteori föreslås. I de empiriska studierna undersöks först sambanden mellan användning av kommunikativa funktioner och barnets funktionsnedsättningar samt hur situationen påverkar. Detta görs genom en kombinerad analysmodell som är både variabel- och person-inriktad. Sedan testas den föreslagna systemteoretiska analysen på två fallstudier av samspel mellan barn och vårdare.
Resultaten visar att användning av olika kommunikativa funktioner hade vissa samband med typ och grad av funktionsnedsättning hos de undersökta barnen men att det också fanns individuella mönster som skiljde sig från gruppresultatet. Det framkom dessutom att användningen av olika kommunikativa funktioner hade starkare samband med hur situationen såg ut än med vilka funktionsnedsättningar barnen hade. När det gällde undersökningarna av själva kommunikationsprocessen mellan barnet och den vuxne visade det sig att de båda kontinuerligt samordnande sig och att själva processen bestod av att tillsammans konstruera gemensamma ramar av samförstånd. Denna process genomgick kvalitativt olika faser som växlade mellan instabilitet och stabilitet. Användandet av systemteori som ett analysverktyg, gav upphov till tre modeller. Den första visar uppbyggnaden av en hierarkisk ordning av de gemensamma ramarna, den andra gäller dynamiken i processen och den tredje hur skiftet mellan olika faser sker i processen.
Diskussionen koncentreras kring hur resultaten från studierna tillsammans med de teoretiska aspekterna som framförts kan bidra till en erfarenhetsbaserad praxis. De huvudsakliga slutsatserna är att i ett kommunikativt samspel som involverar en person med flera grava funktionshinder så är kommunikationens mening något som konstrueras tillsammans av de båda parterna och därför kan kommunikation inte betraktas som en individuell kompetens kompetensen finns i dyaden.
The meaning of support as narrated by family carers who care for a senior relative at home.
The MetLife caregiving cost study: productivity losses to US business
Since the release of the 1997 MetLife Study of Employer Costs for Working Caregivers, new research has helped us better understand the issues facing employed caregivers and their employers, new workplace programs have been developed and
more employees are reporting involvement in eldercare. In 2004, the National Alliance for Caregiving and AARP issued the findings of a survey of U.S. caregivers which forms the basis of this update of the costs to employers of caregiving employees.1 Findings are based on a Level of Burden Index, with Level 1 being the lowest in caregiving intensity and level 5 being the highest. Intense caregivers (Levels 3 – 5) are defined as doing personal care tasks (such as bathing, dressing, feeding as well as other tasks) for an average of 12 to 87 hours per week; levels 1 and 2 are caregivers providing, on average, fewer than 10 hours of care per week of less intense tasks, such as taking someone to a doctor's appointment or doing housework for them. This study estimates the productivity losses to U.S. business of employees who must make workplace accommodations as a result of caregiving responsibilities. These include costs associated with replacing employees, absenteeism, crisis in care, workday interruptions, supervisory time, unpaid leave, and reducing hours from full-time to part time.Since the release of the 1997 MetLife Study of Employer Costs for Working Caregivers, new research has helped us better understand the issues facing employed caregivers and their employers, new workplace programs have been developed and more employees are reporting involvement in eldercare. In 2004, the National Alliance for Caregiving and AARP issued the findings of a survey of U.S. caregivers which forms the basis of this update of the costs to employers of caregiving employees.1 Findings are based on a Level of Burden Index, with Level 1 being the lowest in caregiving intensity and level 5 being the highest. Intense caregivers (Levels 3 – 5) are defined as doing personal care tasks (such as bathing, dressing, feeding as well as other tasks) for an average of 12 to 87 hours per week; levels 1 and 2 are caregivers providing, on average, fewer than 10 hours of care per week of less intense tasks, such as taking someone to a doctor's appointment or doing housework for them. This study estimates the productivity losses to U.S. business of employees who must make workplace accommodations as a result of caregiving responsibilities. These include costs associated with replacing employees, absenteeism, crisis in care, workday interruptions, supervisory time, unpaid leave, and reducing hours from full-time to part time.
The Strengthening Washington D.C. Families Project: A Randomized Effectiveness Trial of Family-Based Prevention.
The Strengthening Washington DC Families Project (SWFP) examined implementation fidelity and effectiveness when a selective, evidence-based prevention program was implemented with a sample of 715 predominantly African American families across multiple settings in an urban area. Using a true experimental design, this study reports on the differential effectiveness of four conditions (child skills training only, parent skills training only, parent and child skills training plus family skills training, and minimal treatment controls) in reducing child antisocial behavior and its precursors. Major challenges with recruitment and retention of participants and uneven program coverage were documented. No statistically significant positive effects for any of the program conditions were observed, and a statistically significant negative effect on child reports of Negative Peer Associations was observed for children of families assigned to the family skills training condition. Two marginally significant findings were observed: Child's positive adjustment favored families assigned to family skills training condition relative to minimal treatment and child training only, and family supervision and bonding was lower for children in family skills training than in the other three conditions. Hypotheses about potential explanations for the weaker than expected effects of this program are offered, as are thoughts about the infrastructure necessary to successfully implement family strengthening programs and the future of prevention science.
The support of parents in old age by those born during 1945-1954: A European perspective
The use of an internet-based ask the doctor service involving family physicians: Evaluation by a web survey
Vuxna med neuropsykiatrisk diagnos får inte tillräcklig hjälp: Kartläggning visar på omfattande behov av behandling och stöd
Våld i särskilda boenden för äldre : involverade vårdares berättelser (Lic.)
Våld i särskilda boenden för äldre : involverade vårdares berättelser [Lic.].
Vårdplanering en utmaning för anhöriga : Tema : Att vara anhörig
Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice
This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.
Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice.
This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.
Åldrandet och äldreomsorgen
Äldreomsorgen är beroende av att anhöriga stöttar
The iconicity of picture communication symbols for children with English additional language and mild intellectual disability
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 impacts of parental loss and adverse parenting on mental health: findings from the national comorbidity survey-replication
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.
Use of eye‐pointing by children with cerebral palsy: what are we looking at?
BACKGROUND:
Children with cerebral palsy often show significant communication impairment due to limited or absent speech. Further, motor impairment can restrict the use of movement, including pointing, to signal interest and intent. For some children, controlled gaze can be an effective 'point-substitute': such 'eye-pointing' can be used to request items, establish mutual interest in an event, or select vocabulary within an alternative or augmentative communication (ACC) system. However, in clinical practice there is a lack of clarity about how the term 'eye-pointing' is used, how 'eye-pointing' is recognized or how it relates to social development.
AIMS:
To present a clinical description of the term 'eye-pointing' with reference to children with severe cerebral palsy who cannot speak or finger-point. To consider this description within a wider discussion of the importance of gaze in communication development.
METHODS & PROCEDURES:
Cumulative clinical observations during assessment of children referred to a specialist multidisciplinary communication clinic have provoked discussion between the authors on what factors precipitate use of the term 'eye-pointing' in young children with severe cerebral palsy. In particular, discussion has centred on whether use of the term is appropriate in individual cases and whether guidance is available about how gaze should be observed in this developmentally vulnerable group of children. A literature search was also conducted in order to explore whether the use and meaning of the term is established.
CONCLUSIONS & IMPLICATIONS:
In interactions with non-speaking children, determining whether a child is using eye-gaze communicatively requires observation and interpretation of several factors. These processes will be informed by reflection on what is known about other aspects of the child's communication and interaction skills. Within the literature, the term 'eye-pointing' is sometimes used when describing the communication functions of individuals using augmentative and alternative communication (AAC) systems, and is occasionally qualified by a definition. No papers have been found that set out a clinical description universally applicable to children with severe motor impairment. Moreover, guidance is lacking on how possible episodes of 'eye-pointing' might be confidently distinguished from other episodes of directed gaze in young, developing communicators. The discussion of the term makes reference to the importance of gaze in early communication development, and explores factors that might influence gaze and its interpretation in young children with cerebral palsy. A description of eye-pointing for this group is offered. The authors suggest that this will bring practical benefits to those supporting the communication development of children with severe cerebral palsy.
"My Friends are my Family‘: an argument about the limitations of contemporary law's recognition of relationships in later life."
Current UK law and social policy privilege the conjugal couple, biological and filial relationships. Friendship remains on the margins of regulatory recognition. Yet friendship is of growing significance in contemporary social relationships. This is particularly so for older people, especially for older lesbian, gay and bisexual people. This paper explores the place of friendship in key areas of law and social policy relating to older age: pensions, benefits and inheritance; medical decision making; mental health and mental capacity legislation; and social care policy. The extent to which contemporary law is keeping up with changing relationship forms will be considered, together with its implications for equality in later life
A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial
BACKGROUND:
The majority of stroke patients are discharged home dependent on informal caregivers, usually family members, to provide assistance with activities of daily living (ADL), including bathing, dressing and toileting. Many caregivers feel unprepared for this role and this may have a detrimental effect on both the patient and caregiver.
OBJECTIVE:
To evaluate whether or not a structured, competency-based training programme for caregivers [the London Stroke Carer Training Course (LSCTC)] improved physical and psychological outcomes for patients and their caregivers after disabling stroke, and to determine if such a training programme is cost-effective.
DESIGN:
A pragmatic, multicentre, cluster randomised controlled trial.
SETTING:
Stratified randomisation of 36 stroke rehabilitation units (SRUs) to the intervention or control group by geographical region and quality of care.
PARTICIPANTS:
A total of 930 stroke patient and caregiver dyads were recruited. Patients were eligible if they had a confirmed diagnosis of stroke, were medically stable, were likely to return home with residual disability at the time of discharge and had a caregiver available, willing and able to provide support after discharge. The caregiver was defined as the main person--other than health, social or voluntary care provider--helping with ADL and/or advocating on behalf of the patient.
INTERVENTION:
The intervention (the LSCTC) comprised a number of caregiver training sessions and competency assessment delivered by SRU staff while the patient was in the SRU and one recommended follow-up session after discharge. The control group continued to provide usual care according to national guidelines. Recruitment was completed by independent researchers and participants were unaware of the SRUs' allocation.
MAIN OUTCOME MEASURES:
The primary outcomes were self-reported extended ADL for the patient and caregiver burden measured at 6 months after recruitment. Secondary outcomes included quality of life, mood and cost-effectiveness, with final follow-up at 12 months.
RESULTS:
No differences in primary outcomes were found between the groups at 6 months. Adjusted mean differences were -0.2 points [95% confidence interval (CI) -3.0 to 2.5 points; p = 0.866; intracluster correlation coefficient (ICC) = 0.027] for the patient Nottingham Extended Activities of Daily Living score and 0.5 points (95% CI -1.7 to 2.7 points; p = 0.660; ICC = 0.013) for the Caregiver Burden Scale. Furthermore, no differences were detected in any of the secondary outcomes. Intervention compliance varied across the units. Half of the participating centres had a compliance rating of > 60%. Analysis showed no evidence of higher levels of patient independence or lower levels of caregiver burden in the SRUs with better levels of intervention compliance. The economic evaluation suggests that from a patient and caregiver perspective, health and social care costs, societal costs and outcomes are similar for the intervention and control groups at 6 months, 12 months and over 1 year.
CONCLUSIONS:
We have conducted a robust multicentre, cluster randomised trial, demonstrating for the first time that this methodology is feasible in stroke rehabilitation research. There was no difference between the LSCTC and usual care with respect to improving stroke patients' recovery, reducing caregivers' burden, or improving other physical and psychological outcomes, nor was it cost-effective compared with usual care. Compliance with the intervention varied, but analysis indicated that a dose effect was unlikely. It is possible that the immediate post-stroke period may not be the ideal time for the delivery of structured training. The intervention approach might be more relevant if delivered after discharge by community-based teams.
TRIAL REGISTRATION:
Current Controlled Trials ISRCTN49208824.
FUNDING:
This project was funded by the MRC and is managed by the NIHR (project number 09/800/10) on behalf of the MRC-NIHR partnership, and will be published in full in Health Technology Assessment; Vol. 17, No. 46. See the NIHR Journals Library website for further project information.
A multiple-case study of a family-oriented intervention practice in the early rehabilitation phase of persons with aphasia
Background: Having a family member with aphasia severely affects the everyday life of the significant others, resulting in their need for support and information. Family-oriented intervention programmes typically consist of support, information, and skill training, such as communication partner training (CPT). However, because of time constraints and perceived lack of skills and routines, such programmes, especially CPT, are not common practice among speech-language pathologists (SLPs).
Aims: To design and evaluate an early family-oriented intervention of persons with stroke-induced moderate to severe aphasia and their significant others in dyads. The intervention was designed to be flexible to meet the needs of each participant, to emotionally support the significant others and supply them with information needed, to include CPT that is easy to learn and conduct for SLPs, and to be able to provide CPT when the persons with aphasia still have access to SLP services.
Methods & Procedures: An evaluative multiple-case study, involving three dyads, was conducted no more than 2 months after the onset of aphasia. The intervention consisted of six sessions: three sessions directed to the significant other (primarily support and information) and three to the dyad (primarily CPT). The intervention was evaluated both qualitatively and quantitatively based on video recordings of conversations and self-assessment questionnaires.
Outcomes & Results: The importance of emotional support as well as information about stroke/aphasia was clearly acknowledged, especially by the significant others. All significant others perceived increased knowledge and understanding of aphasia and related issues.
Communicative skills (as manifested in the video recordings) showed improvements from pre- to post-intervention.
Conclusions: The results corroborate the need for individualised and flexible family-oriented SLP services that are broad in content. Furthermore, the results support the early initiation of such services with recurrent contact. The usefulness of CPT this early in the rehabilitation process was indicated but is yet to be proved.
A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.
Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.
A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.
Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.
Acceptable and unacceptable risk: balancing every day risk by family members by older cognitively impaired adults who live alone
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.
Activity and participation in home rehabilitation: older people's and family members' perspectives
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 perspectives on VOCA-mediated conversations
Adolescence and borderline behavior—Between personality development and personality disorder
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.
Aging in Place in a Retirement Community: 90+ Year Olds
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.
Alcohol use during pregnancy in Canada: How policy moments can create opportunities for promoting women’s health
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
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.
An assessment of the relationship between informal caring and quality of life in older community-dwelling adults -- more positives than negatives
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.
Anhörigas situation. En rapport från Riks-Stroke
Approaching the prevalence of the full spectrum of fetal alcohol spectrum disorders in a South African population-based study
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.
Are parental ADHD problems associated with a more severe clinical presentation and greater family adversity in children with ADHD?
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.
Att tala samma språk. Gemensam struktur vid bedömning av vårdbidrag
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 utveckla anhörigstöd
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.
Augmentative and Alternative Communication – Supporting Children and Adults with Complex Communication Needs
As AAC use continues to flourish and new technology revolutionizes the field, tomorrow's service providers need current, authoritative information on AAC for children and adults with communication disorders. That's why David Beukelman and Pat Mirenda have revised and updated the bestselling Augmentative and Alternative Communication—the trusted, widely adopted graduate-level text on communication disorders and AAC. The foundational textbook for SLPs, OTs, PTs, teachers, and other professionals in clinical and educational settings, this fourth edition is a definitive introduction to AAC processes, interventions, and technologies that help people best meet their daily communication needs. Future professionals will prepare for their work in the field with critical new information on
advancing literacy skills (new chapter by Janice Light and David McNaughton)
conducting effective, culturally appropriate assessment to determine AAC needs
choosing AAC interventions appropriate for age and ability
selecting AAC vocabulary tailored to individual needs
using new consumer technologies as easy, affordable, and non-stigmatizing communication devices
understanding types of symbols and how individuals use them
promoting social competence
supporting language learning and development
providing effective support to beginning communicators
planning an inclusive education for students with complex communication needs
Readers will get a thorough overview of communication and AAC issues for people with specific developmental disabilities (including cerebral palsy, intellectual disability, and autism) and acquired disabilities (such as aphasia, traumatic brain injury, and degenerative cognitive and linguistic disorders). And with helpful photos, figures, and photocopiable forms, readers will be ready to collect and use important information on assessment, individual communication needs, classroom supports, and more.
An essential core text for tomorrow's professionals—and a key reference for inservice practitioners—this new fourth edition expertly prepares readers to support the communicative competence of children and adults with a wide range of complex needs.
Barn och unga med medfödda funktionsnedsättningar – Behovsanalys inklusive resultat från Brukardialogberedning 3
Målgruppen för behovsanalysen är barn och unga med medfödd funktionsnedsättning, som
har behov av planerade och från flera kompetensområden sammansatta åtgärder. Det vill säga
barn och unga som ingår i habiliteringens uppdrag. Exempel på några av de större grupper
som får insatser inom habiliteringen är cerebral pares, ryggmärgsbråck, muskelsjukdomar,
flerfunktionsnedsättning, utvecklingsstörning, missbildningssyndrom och autismspektrumtillstånd.
De behov som finns inom målgruppen är många gånger komplexa och flertalet har
behov av insatser från flera olika delar av hälso- och sjukvården men också av kommunen och
Försäkringskassan. Frågeställningar som behandlas i analysen är information och stöd,
tillgången till insatser, hjälpmedel och specialistläkare, intern och extern samverkan, fast
namngiven kontaktperson, vårdgaranti och likvärdig vård.
Utgångspunkten för svensk folkhälsopolitik och funktionshinderspolitik är principen om alla
människors lika värde och lika rätt, som även återfinns i barnkonventionen och i konventionen
om rättigheter för personer med funktionsnedsättning. Sedan 1997 finns en etisk plattform
med 3 grundprinciper som ska ligga till grund för prioriteringar inom hälso- och sjukvård i
Sverige, människovärdesprincipen, behovs- och solidaritetsprincipen och kostnadseffektivitetsprincipen.
I hälso- och sjukvårdslagen anges 4 prioriteringsgrupper inom
sjukvården, där vård av sjukdomar som utan behandling leder till varaktigt invalidiserade
tillstånd eller för tidig död och habilitering är högt prioriterat.
I nuläget saknas nationella riktlinjer för behovsgruppen. Vad gäller nationella kvalitetsregister
medverkar landstinget i CPUP, uppföljningsprogram av rörelseapparaten för barn och unga
med cerebral pares och i HabQ, kvalitetsregister för habilitering. HabQ startade som ett
kvalitetsregister för barn och unga med cerebral pares, 2011 inkluderades barn med autism.
Målet är att följa alla barn och ungdomar som får insatser genom habiliteringens verksamhet.
I landstinget finns vårdprocessprogram för ryggmärgsbråck och neuropsykiatri, barn och
unga.
Cirka 2 500 personer omfattas av habiliteringens insatser i länet, varav 1 600 är barn och
unga. Inom landstinget finns 3 enheter för barn- och ungdomshabilitering, vilka är olika
uppbyggda och ingår i närsjukvården i respektive länsdel. Det ökade inflödet av barn och
unga med neuropsykiatrisk problematik de senaste åren har inneburit ett ökat tryck på
habiliteringens verksamheter. Enligt verksamhetsföreträdare har det inneburit en viss
förskjutning av resurser till förmån för utredning och behandling inom neuropsykiatri, vilket
inneburit en viss undanträngningseffekt för övriga grupper inom habiliteringen. För att
hantera det ökade behovet av neuropsykiatrisk utredning och behandling har verksamheterna
även tagit till olika lösningar i samverkan med barn- och ungdomspsykiatrin i de tre
länsdelarna.
Barn- och ungdomshabiliteringen har under flera år haft brist på specialistläkare. Hösten 2012
genomförde länets barn- och ungdomshabiliteringar och barnkliniker en riskanalys gällande
bristen på specialistläkare inom barn- och ungdomsneurologi och habilitering. Riskanalysen
har bland annat lett till att 2 strategiska block för ST-läkare med inriktning neurologi inrättas
2014 som en gemensam satsning mellan habiliteringesenheterna och barnklinikerna.
8
Under våren 2013 genomförde brukardialogberedning 3 intervjuer med barn och unga med
medfödda funktionsnedsättningar samt deras föräldrar. Som förälder till ett barn med
komplexa behov är det viktigt att bli bemött på ett bra sätt i kontakterna med hälso- och
sjukvården och andra myndigheter. Det är viktigt att få tillgång till stöd och till relevant
information om diagnosen eller funktionsnedsättningen i ett tidigt skede. Det är också viktigt
att hela familjen har tillgång till olika former av stödinsatser under lång tid.
För många föräldrar tar det lång tid att vänja sig vid den nya situationen och man ägnar
mycket tid åt saker som normalt inte ingår i föräldrarollen. Det kan handla om att barnet långt
upp i ålder behöver lika mycket omsorg och passning som när han eller hon var nyfödd.
Mycket tid och pengar läggs på träning, anpassning av miljön eller att skjutsa till olika
specialaktiviteter. Oräkneliga timmar läggs på att samordna alla kontakter kring barnet med
hälso- och sjukvården, kommunen, assistenter, försäkringskassa och så vidare.
Behovet av habiliterande insatser och hjälpmedel är ofta stort hos barn och unga som har en
funktionsnedsättning. När det gäller habiliterande insatser upplever en del att dessa tenderar
att minska i takt med barnets ålder, trots att behovet är oförändrat. Många upplever även att
det är långa väntetider för utredningar. Flera synpunkter berör brister inom hjälpmedelsområdet.
Att det är långa leveranstider på nya hjälpmedel och att det tar tid att få hjälpmedel
reparerade. Man anser också att hjälpmedelssortimentet är begränsat och att systemet med
särskild prövning är krångligt och byråkratiskt. Ytterligare synpunkter handlar om bristande
tillgång till information om vilka insatser och hjälpmedel som finns att få. Många upplever att
de får söka information själva. Men det är inte lätt att leta efter information när man inte vet
vad man ska leta efter eller fråga om. Sökprocessen blir omständig och tidsödande.
Utbudet av habiliterande insatser och metoder och hjälpmedelssortiment kan se olika ut i olika
landsting och regioner. Något som de intervjuade upplever som orättvist och föräldrarna anser
att alla barn borde ha samma förutsättningar var i landet man än bor. Bristande tillgång till
specialistläkare upplevs som ett annat problem och flera uttrycker en oro för att deras barn
inte ska få tillgång till viktiga insatser som de har behov av.
Utifrån den etiska plattformen är barn och unga med medfödda funkitonsnedsättningar en
högt prioriterad grupp i samhället. Deras behov av god vård i hela vårdprocessen behöver
säkerställas för att minska risken för komplikationer och förbättra den långsiktiga prognosen
och därmed livskvaliteten för barnen.
De utvecklingsområden som identifierats i behovsanalysen finns inom områdena: Information
och stöd, Samverkan/samordning och kontinuitet och Tillgänglig, likvärdig och säker vård.
Barn och ungas hälsa, vård och omsorg
Barns och ungas hälsa och sociala förhållanden i Sverige är goda, även jämfört med andra välfärdsländer. Detta gäller i synnerhet spädbarn och skolbarn. Exempelvis är barnadödligheten i dessa åldrar bland de absolut lägsta i världen. Barns och ungas fysiska miljö är god ur ett internationellt perspektiv, med låg förekomst av miljörelaterad sjuklighet, till exempel orsakad av luftföroreningar. Sverige ligger dock inte lika mycket i framkant när det gäller de lite äldre barnen. Symtom på ett nedsatt psykiskt välbefinnande (ledsenhet, sömnsvårigheter, huvudvärk med mera) är vanligare bland svenska 15-åringar än i andra länder. Narkotikabruk är mindre vanligt bland svenska unga medan alkoholkonsumtionen är på en genomsnittlig europeisk nivå.
I vårt land har hälsoutvecklingen bland unga inte sett likadan ut som för andra åldersgrupper. Exempelvis har risken att avlida i åldersspannet 15–29 år varit oförändrad de sista 15 åren, när dödligheten har minskat i alla andra åldrar. Självmorden minskar inte bland ungdomar, vilket de gör för andra åldersgrupper. Dödligheten i olycksfall har också varit oförändrad, men minskat de allra senaste åren. Trots det är dödligheten hos unga bland de lägsta i Europa, men för ungdomsgruppen ligger flera länder bättre till.
Sverige – tillsammans med andra skandinaviska länder och Nederländerna – tillhör de länder där ekonomisk utsatthet bland barnfamiljer är minst omfattande. Det är också mycket ovanligt att svenska barn saknar grundläggande nödvändigheter som nya kläder, passande skor, tre mål mat om dagen, böcker eller leksaker med mera. Några förklaringar till detta är att svenska barnfamiljer ofta har två familjeförsörjare, att ensamstående föräldrar arbetar i högre grad och på transfereringar till stöd för barnfamiljer. Av betydelse är också att många välfärdstjänster är avgiftsfria för barn, som exempelvis sjukvård, tandvård, skola och skollunch
Barn som anhöriga – Konsekvenser och behov när föräldrar har allvarliga svårigheter eller avlider
När föräldrar eller andra vuxna i familjen har missbruk, allvarlig sjukdom eller skada, psykisk ohälsa, psykisk funktionsnedsättning, använder våld eller avlider får det konsekvenser för barnen – i större eller mindre grad.
Denna sammanfattning av kunskapsläget syftar till att kortfattat ge ökad kunskap och insikt i barns och ungas situation och behov i familjer med dessa svårigheter.
Syftet är att vidare att belysa varför det är viktigt att anlägga ett familjeperspektiv – både när personal möter barn och unga med olika symtom på psykisk ohälsa och när den möter föräldrar med allvarliga svårigheter. Att uppmärksamma barns behov och ge det stöd som behövs kan både förbättra situationen här och nu och förebygga senare negativa konsekvenser.
Skriften riktar sig till personal inom hälso- och sjukvård, socialtjänst samt förskola och skola.
Barn som anhöriga – Konsekvenser och behov när föräldrar har allvarliga svårigheter, eller avlider
När föräldrar eller andra vuxna i familjen har missbruk, allvarlig sjukdom eller skada, psykisk ohälsa, psykisk funktionsnedsättning, använder våld eller avlider får det konsekvenser för barnen – i större eller mindre grad.
Denna sammanfattning av kunskapsläget syftar till att kortfattat ge ökad kunskap och insikt i barns och ungas situation och behov i familjer med dessa svårigheter.
Syftet är att vidare att belysa varför det är viktigt att anlägga ett familjeperspektiv – både när personal möter barn och unga med olika symtom på psykisk ohälsa och när den möter föräldrar med allvarliga svårigheter. Att uppmärksamma barns behov och ge det stöd som behövs kan både förbättra situationen här och nu och förebygga senare negativa konsekvenser.
Skriften riktar sig till personal inom hälso- och sjukvård, socialtjänst samt förskola och skola.
Barn som anhöriga till patienter i vården – hur många är de? Nka Linnéuniversitetet Chess, Barn som anhöriga 2013:1.
Den 1 januari 2010 infördes en ny lagstiftning angående hälso- och sjukvården ansvar att
ge information, råd och stöd till barn vars föräldrar har en allvarig psykisk eller fysisk
sjukdom inklusive missbruk, eller oväntat avlider. Den här rapporten syftar till att ge
övergripande bild av hur många barn som direkt berörs av denna nya lag.
Rapporten baseras i första hand på anonymiserade analyser av data om sluten vård på
sjukhus från Patientregistret under 1987–2008, och dödsfall i Dödsorsaksregistret under
1973–2008. Registerdata från Statistiska Centralbyrån har använts för att koppla föräldrar
till sina biologiska barn och definiera familjers sociala karaktäristika.
Av de barn som föddes 1987–89 hade 7,8 procent minst en förälder som vårdats inneliggande
på sjukhus på grund av psykisk sjukdom och/eller missbruk av alkohol eller
narkotika under barndomen, d v s innan de hade fyllt arton år. Psykisk sjukdom hos för-
äldern var den vanligaste orsaken som berörde 5,7 procent av barnen, medan alkoholmissbruk
berörde 2,5 procent och narkotikamissbruk 1,5 procent. Under ett enskilt år
handlar det om ca 26 000 barn som har minst en förälder som vårdas på sjukhus grund
av psykisk sjukdom eller missbruk.
Betydligt fler föräldrar har indikatorer på problem med alkohol och narkotika av mildare
grad. Om man också räknar in föräldrar som haft vårdkontakter i öppen vård på
sjukhus på grund av missbruk, eller har dömts i domstol på grund av rattfylleri eller narkotikabrott,
var det totalt 17,0 procent av barnen som berördes. Psykisk ohälsa hos föräldrar
som inte är så allvarlig att den leder till sjukhusvård är också relativt vanlig. I undersökningen
av levnadsförhållanden (ULF) 2007–11 svarade t ex 18,1 procent av föräldrar
till barn i åldern 10–18 år att de led av ängslan, ångest eller oro. Psykofarmakamedicinering
är en annan indikator på psykisk ohälsa hos föräldrar. Under ett enskilt genomsnittligt
år under perioden 2006–8 använde 10,7 procent av mödrar och 5,5 procent av fäder
till barn i åldern 1–18 år ett antidepressivt läkemedel.
Något riktigt bra mått på somatisk (=fysisk) sjukdom hos förälder som är så svår att
deras barn behöver information och/eller stöd finns inte i svenska register. I denna rapport
användes definitionen somatisk sjukdom utan missbruk hos föräldrar som var så
svår att den föranledde minst en veckas inneliggande vård på sjukhus, vilket 12,6 procent
av alla barn födda 1987–89 upplevde före sin artonårsdag. Många fler föräldrar har någon
form av kronisk sjukdom, 28,4 procent av föräldrar till barn i åldern 10–18 år i ULFundersökningen
2007–11 rapporterade t ex minst en kronisk sjukdom.
3,4 procent av alla barn födda 1973–89 hade minst en förälder som avlidit innan deras
artonårsdag. Under ett enskilt år är under perioden 2006–08 berördes ca 3 500 barn. 22
procent av de avlidna fäderna och 12 procent av de avlidna mödrarna hade indikatorer på
alkohol- och/eller narkotikamissbruk. Plötslig oväntad död hos en förälder orsakad av
självmord, våld eller olycka drabbade 600–650 barn varje år. Barn som drabbas av dödsfall
på grund av olyckor och våld hos föräldrar är ofta förskolebarn, medan andra typer av
dödsfall hos föräldrar framför allt drabbar barn i tonåren.
Missbruk och psykisk sjukdom är inte sällan en bidragande orsak till separation mellan
föräldrar. En konsekvens av detta är att många föräldrar som vårdas på sjukhus på grund
av dessa problem inte bor tillsammans med sina barn och att den förälder som bor tillsammans
med barnet ofta är ensamstående. Endast ungefär en tredjedel av fäder som
vårdas på sjukhus på grund av missbruk bor tillsammans med sina barn, mot ungefär
dubbelt så många mödrar.
6
Missbruk, sjukdom och dödsfall hos föräldrar drabbar framför allt barn som befinner
sig i en utsatt social position i det svenska samhället. Det är ungefär tre gånger så vanligt
att föräldrar i barnfamiljer med låg socio-ekonomisk position vårdas på sjukhus för någon
av dessa orsaker jämfört med föräldrar i barnfamiljer med hög socio-ekonomisk position
En social gradient finns också för dödsfall hos föräldrar, där den är större för dödsfall för
fäder än för mödrar, och särskilt stor för plötsliga oväntade dödsfall som orsakas av
självmord, våld och olyckor, dödsfall som framför allt drabbar fäder.
Föräldrar födda utanför Europa vårdas betydligt mer sällan på sjukhus grund av såväl
alkohol som narkotikamissbruk jämfört med föräldrar med svenskt ursprung, men något
oftare än andra på grund av psykisk sjukdom. Föräldrar med annat nordiskt ursprung än
svenskt vårdas oftare för såväl missbruk som psykisk sjukdom, och har och har också en
högre dödlighet än barn till föräldrar med annat svenskt eller utländskt ursprung.
Föräldrars missbruk eller psykiska sjukdom är vanliga orsaker till att barn omhändertas
för samhällsvård i Sverige. För barn som vårdats mer än fem år i samhällsvård har 61
procent åtminstone en förälder som vårdats inneliggande på grund av missbruk eller psykisk
sjukdom, och 23 procent har en förälder som har avlidit före barnen fyllt arton år.
Det stora antalet barn som potentiellt berörs av den nya lagen om information och stöd
till barn som anhöriga i hälso- och sjukvården gör det angeläget med en diskussion om
prioriteringar, och ett utvecklingsarbete kring insatser med olika grad av intensitet som
kan matchas till barn med olika nivåer av behov. Här krävs ett nära samarbete mellan
hälso- och sjukvården och socialtjänsten, och särskilt viktigt är detta för att utveckla insatser
som är ändamålsenliga för de stora behov av information och stöd kring föräldrars
psykiska sjukdom, missbruk och död som rör barn i samhällsvård. Barn till föräldrar med
kroniska fysiska sjukdomar framstår som ett område där fördjupade analyser i andra
datakällor än register är särskilt viktiga för att skapa underlag för det fortsatta utvecklingsarbetet.
Barn som anhöriga: hur går det i skolan?
Rapport 2 från projektet "Barn som anhöriga" från CHESS, Stockholms universitet/Karolinska Institutet i samarbete med Institutionen för socialt arbete vid Stockholms universitet.
Denna kartläggning av hur det går i skolan för barn som berörs av allvarliga svårigheter hos förälder eller annan vuxen i familjen, har gjorts inom ramen för ett regeringsuppdrag.
Barn som anhöriga: hur går det i skolan? Nka, Linnéuniversitetet, Chess, Barn som anhöriga 2013:3.
Detta är den andra rapporten av tre i projektet "Barn som anhöriga", som genomförs
av CHESS och institutionen för socialt arbete vid Stockholms universitet i samarbete
med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar.
Rapportens syfte är att belysa skolprestationer i grundskolan för barn som är anhö-
riga. Vi har analyserat meritvärde och gymnasiebehörighet från årskurs 9 för 655 000
barn under 2003–2008, med fokus på barn som är anhöriga, det vill säga barn med
föräldrar som har vårdats på sjukhus på grund av missbruk, psykisk eller fysisk sjukdom
eller som har avlidit – då barnen var i åldern 0–15 år.
Bland alla barn i undersökningen var det 10,3 procent av flickorna och 13,0 procent
av pojkarna som lämnade grundskolan utan att ha uppnått gymnasiebehörighet.
Barn till föräldrar med missbruk och/eller psykisk sjukdom utgjorde tillsammans sju
procent av studiepopulationen, och framstod som den grupp bland barn som anhö-
riga som hade de minst tillfredställande skolresultaten. Av pojkar som har en förälder
som missbrukar var det 27 procent (far missbrukar) respektive 30 procent (mor
missbrukar) som lämnade grundskolan utan gymnasiebehörighet, liksom 22 respektive
23 procent av pojkar som har en förälder med psykisk sjukdom, jämfört med enbart
12 procent av pojkar från familjer utan missbruk eller psykisk sjukdom. Något
fler flickor än pojkar uppnådde gymnasiebehörighet även i dessa familjer, men
mönstret i förhållande till föräldrars missbruk och psykiska sjukdom var detsamma
som för pojkar.
Det maximala meritvärdet för en elev som går ut årskurs 9 är 320 och medianvärdet
i denna undersökning var 210. Genomsnittligt var meritvärdet, i jämförelse med
barn i familjer utan känt missbruk eller psykisk sjukdom, 45 meritpoäng lägre hos
barn till missbrukande mödrar, 39 meritpoäng lägre hos barn till missbrukande fäder
och 22 meritpoäng lägre hos barn till någon förälder med psykisk sjukdom.
Missbruk hos föräldrar, men också i viss mån psykisk sjukdom, var vanligare i familjer
som fått försörjningsstöd det år barnet avslutade årskurs 9, där föräldrarna
hade kort skolgång bakom sig och familjer där föräldrarna hade separerat. För att
undersöka betydelsen av detta för barnens skolresultat gjorde vi en analys där vi på
matematisk väg vägde in dessa faktorer tillsammans med föräldrarnas missbruk och
psykiska sjukdom. Det visade sig att så mycket som 85 procent av den ökade risken
för barn till föräldrar med missbruk och 75 procent av den ökade risken för barn till
föräldrar med psykisk sjukdom att inte uppnå gymnasiebehörighet var förknippad
med dessa tre sociala faktorer. Vår analys pekar på att det både handlar om sociala
faktorer som kan ha bidragit till uppkomsten av missbruket respektive den psykiska
sjukdomen (utbildningsbakgrund) och faktorer som troligen oftare är en konsekvens
(försörjningsstöd respektive föräldraseparation) av dessa föräldrafaktorer.
Av barnen i studiepopulationen bodde 63 procent i samma hushåll som bägge sina
biologiska föräldrar det år som de avslutade årskurs 9. Av övriga barn hade 35 procent
föräldrar som separerat och 2,1 procent en förälder som avlidit. Ungefär dubbelt
så många barn till separerade föräldrar och barn i familjer där någon förälder avlidit
lämnade grundskolan utan gymnasiebehörighet, jämfört med barn i kärnfamiljer, där
andelen var drygt åtta procent. Skillnaderna mellan barn till separerade föräldrar och
barn i familjer där någon förälder avlidit var små. Det fanns en viss skillnad mellan
könen när det gällde konsekvenserna av att ha förlorat sin mor i dödsfall, där konse-
6
kvenserna var större för flickor än för pojkar. För bägge könen var dock konsekvenserna
större av att ha förlorat en far än en mor. Sociala faktorer som föräldrars utbildningsbakgrund
och försörjningsstöd bidrog något till skillnaderna i skolresultat
mellan barn i kärnfamiljer och barn i enföräldrahushåll.
Fysisk sjukdom hos föräldrar representerades i denna studie av inflammatorisk
tarmsjukdom, multipel skleros och leukemi. Barn vars mödrar hade inflammatorisk
tarmsjukdom eller multipel skleros hade något lägre meritvärde än genomsnittet,
efter att analysen har justerats för den friska förälderns skolbakgrund, medan någon
negativ effekt av fäders sjukdom på barnens skolprestationer inte noterades. Leukemi
fick exemplifiera cancersjukdom hos föräldrar i undersökningen. Barn till föräldrar
med leukemi med dödlig utgång hade klart sämre skolprestationer än andra barn i
undersökningen, medan några skillnader från genomsnittet överhuvudtaget inte
kunde identifieras hos barn till förälder som överlevde leukemi. Det behövs dock fler
studier av barn till föräldrar som drabbas av cancersjukdom för att bekräfta dessa
resultats relevans för cancer hos föräldrar i allmänhet.
Ett genomgående mönster för samtliga grupper av barn som anhöriga var att för-
äldrars egen utbildningsbakgrund hade större betydelse för barnets skolprestationer
än förälderns sjukdom eller död, och att en lång utbildning hos föräldrar hade en viss
skyddande effekt på skolprestationerna av förälderns sjukdom eller död. Vi ser också
att barn i familjer med försörjningsstöd generellt har ett lågt meritvärde, oavsett om
föräldrarna har indikation på missbruk/psykisk sjukdom eller ej.
Resultaten från denna studie visar att föräldrars missbruk, sjukdom och död inte
sällan påverkar deras barns skolresultat på ett negativt sätt. Yrkesgrupper som möter
dessa barn bör således tänka på att hjälp med skolarbete och läxläsning kan vara en
viktig komponent i ett psykosocialt stöd. När det gäller förebyggande insatser i skolan
pekar studien i första hand på behovet av generella insatser för barn som har svårt att
få stöd i hemmet i skolarbetet oavsett orsak. Där det kan handla om barn som är anhöriga,
men likväl om barn med t ex separerade föräldrar eller föräldrar med kort
egen utbildning.
Studien pekar också på särskilt bristfälliga skolresultat hos barn där föräldrars
sjukdom och död drabbar familjer som har kontakt med socialtjänsten, antingen i
form av försörjningsstöd eller genom att barnen placerats i samhällsvård. De bristfälliga
skolprestationerna hos dessa gör socialtjänsten till en naturlig plattform för interventioner
i syfte att stödja skolarbetet hos barn i familjer med social sårbarhet,
inklusive sjukdom och död hos förälder. Både svensk och internationell forskning
pekar på att det är realistiskt att förvänta sig positiva resultat från denna typ av interventioner.
Det är därför angeläget att metoder för att stödja skolarbetet hos elever i
socialt sårbara familjer får en större spridning bland Sveriges kommuner.
Barn som flyttas i offentlig regi. En studie av förekomst och upplevelser av instabil samhällsvård för barn
Avhandling
Bristande stabilitet för barn i familjehem och på institutioner är vanligt och innebär svåra känslor för barnen. Viktoria Skoog har studerat instabilitet i samhällsvård för barn i form av sammanbrott, vilket betyder att ett barns placering avbryts plötsligt och oplanerat samt planerade byten av vårdmiljöer, vilket betyder att socialtjänsten utifrån planering låter ett barn flytta till ett nytt familjehem eller en ny institution
Barn som flyttas i offentlig regi. En studie av förekomst och upplevelser av instabil samhällsvård för barn
Avhandling
Bristande stabilitet för barn i familjehem och på institutioner är vanligt och innebär svåra känslor för barnen. Viktoria Skoog har studerat instabilitet i samhällsvård för barn i form av sammanbrott, vilket betyder att ett barns placering avbryts plötsligt och oplanerat samt planerade byten av vårdmiljöer, vilket betyder att socialtjänsten utifrån planering låter ett barn flytta till ett nytt familjehem eller en ny institution
Barn som är anhöriga till föräldrar med allvarlig fysisk sjukdom eller skada. En kunskapsöversikt om metoder för att ge stöd till barn
Denna kunskapsöversikt tar upp metoder för att ge information, råd och stöd till barn när deras förälder är fysiskt sjuk. Syftet är att den ska vara ett stöd för professionella i hälso- och sjukvård samt socialtjänst som möter barn och ungdomar i sin yrkesutövning. I kunskapsöversikten presenteras de metoder som kunskapsöversikten identifierat, deras vetenskapliga underlag och effekter. Dessutom beskrivs de svårigheter som barn möter när en förälder blir fysiskt allvarligt sjuk.
Barn som är anhöriga till föräldrar med allvarlig fysisk sjukdom eller skada: En kunskapsöversikt om metoder för att ge stöd till barn
Denna kunskapsöversikt tar upp metoder för att ge information, råd och stöd till barn när deras förälder är fysiskt sjuk. Syftet är att den ska vara ett stöd för professionella i hälso- och sjukvård samt socialtjänst som möter barn och ungdomar i sin yrkesutövning. I kunskapsöversikten presenteras de metoder som kunskapsöversikten identifierat, deras vetenskapliga underlag och effekter. Dessutom beskrivs de svårigheter som barn möter när en blir förälder fysiskt allvarligt sjuk
Barns och ungas hälsa, vård och omsorg 2013
Barns och ungas hälsa och sociala förhållanden i Sverige är goda, även jämfört med andra välfärdsländer. Detta gäller i synnerhet spädbarn och skolbarn. Exempelvis är barnadödligheten i dessa åldrar bland de absolut lägsta i världen. Barns och ungas fysiska miljö är god ur ett internationellt perspektiv, med låg förekomst av miljörelaterad sjuklighet, till exempel orsakad av luftföroreningar. Sverige ligger dock inte lika mycket i framkant när det gäller de lite äldre barnen. Symtom på ett nedsatt psykiskt välbefinnande (ledsenhet, sömnsvårigheter, huvudvärk med mera) är vanligare bland svenska 15-åringar än i andra länder. Narkotikabruk är mindre vanligt bland svenska unga medan alkoholkonsumtionen är på en genomsnittlig europeisk nivå.
I vårt land har hälsoutvecklingen bland unga inte sett likadan ut som för andra åldersgrupper. Exempelvis har risken att avlida i åldersspannet 15–29 år varit oförändrad de sista 15 åren, när dödligheten har minskat i alla andra åldrar. Självmorden minskar inte bland ungdomar, vilket de gör för andra åldersgrupper. Dödligheten i olycksfall har också varit oförändrad, men minskat de allra senaste åren. Trots det är dödligheten hos unga bland de lägsta i Europa, men för ungdomsgruppen ligger flera länder bättre till.
Sverige – tillsammans med andra skandinaviska länder och Nederländerna – tillhör de länder där ekonomisk utsatthet bland barnfamiljer är minst omfattande. Det är också mycket ovanligt att svenska barn saknar grundläggande nödvändigheter som nya kläder, passande skor, tre mål mat om dagen, böcker eller leksaker med mera. Några förklaringar till detta är att svenska barnfamiljer ofta har två familjeförsörjare, att ensamstående föräldrar arbetar i högre grad och på transfereringar till stöd för barnfamiljer. Av betydelse är också att många välfärdstjänster är avgiftsfria för barn, som exempelvis sjukvård, tandvård, skola och skollunch.
BarnsBeste Journalinnsyn ”Barn som pårørende”
Between 'Choice' and 'Active Citizenship': Competing Agendas for Home Care in the Netherlands
Choice over home care has become an important pillar in the provision of publicly financed long-term care for people of all ages. In many European welfare states, cash-for-care schemes give care recipients greater choice over home care arrangements by allowing them to pay for care provided by acquaintances, friends and even family members. Paying for such informal care, however, is increasingly contested due to growing care needs, rising costs and the perceived need to tighten access to publicly funded care. Citizens in paid care-giving roles are thus pressured to continue their care unpaid or re-divide their care-giving responsibilities with lay 'citizen-carers'. On the basis of a Dutch case study, this article examines how paid family care-givers experience this call for greater self-sufficiency in providing care. An analysis of 25 interviews and 21 letters of complaint revealed that care-givers felt trapped between their desire to derive social status from paid work and their inability to reject or re-divide previously paid care responsibilities. In a society where all citizens are expected to work, care-givers feel that their previously paid care-giving is devalued from a public to a private matter, despite the government's attempts to reframe care as an act of good citizenship.
Burden of informal care giving to patients with psychoses: a descriptive and methodological study
Background:
There is a lack of studies of the size of burden associated with informal care giving in psychosis.
Aims:
To evaluate the objective and subjective burden of informal care giving to patients with psychoses, and to compare a diary and recall method for assessments of objective burden.
Method:
Patients and their informal caregivers were recruited from nine Swedish psychiatric outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and COPE index scales. The objective burden (time and money spent) was assessed by the caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and 2.
Results:
One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5 hours/week and about 14% of their gross income on care-related activities. The time spent was underestimated by two to 20 hours when assessed by recall than by daily diary records. The most prominent aspects of the subjective burden were mental problems.
Conclusion:
Despite a substantial amount of time and money spent on care giving, the informal caregivers perceived the mental aspects of burden as the most troublesome. The informal caregiver burden is considerable and should be taken into account when evaluating effects of health care provided to patients with psychoses.
Keywords: Informal care giving, schizophrenia, subjective burden, objective burden, diary method, recall method
Caregiver responsiveness to the Family Bereavement Program: what predicts responsiveness? What does responsiveness predict?
Abstract
The study developed a multidimensional measure to assess participant responsiveness to a preventive intervention and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 caregivers assigned to the intervention condition in the efficacy trial of the FBP. Positive parenting, caregiver depression, and child externalizing problems at baseline were found to predict caregivers' use of program skills outside the group, and more child internalizing problems predicted more positive perceptions of the group environment. Higher levels of skill use during the program predicted increased positive parenting at the 11-month follow-up, whereas positive perceptions of the group environment predicted decreased caregiver depressive symptoms at follow-up. Caregiver skill use mediated the relation between baseline positive parenting and improvements in positive parenting at 11-month follow-up, and skill use and perceived group environment mediated changes in caregiver depression from baseline to 11-month follow-up.
Caregivers´ experiences of caring for an elderly next of kin in Sweden
Background: Care of elderly changed in the 1990s in Sweden; treatment sessions were shortened in particular. Consequently, patients have a greater need for care when returning home from hospital. This task may seem overwhelming and caregivers can feel lonely, worn out and resigned in their situation.
Aim: Explore how caregivers experience caring for an elderly next of kin in ordinary living.
Method: Qualitative content analysis of semi-structured interviews with eleven Swedish caregivers.
Findings: Caregivers experienced their situation as something to be endured. In particular, they felt a need for belonging, a need for controlling everyday life, and a need for support.
Conclusion: Home care nurses, health centres and home support workers should be aware of and respect caregivers' needs in terms of support.
Carers in Sweden: The public support they receive, and the support they desire
•This article describes and analyses public support received by unpaid carers in Sweden
•Three types of carers were identified
•Very few carers helping someone living in a different household – the large majority of carers – received or desired support aimed directly at them
•Carers mostly wanted public services for the cared-for person
•Despite legislation in 2009 mandating municipalities to offer support to carers, very few of them know about this law
•There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support services for themselves
•Social policy needs to clarify the aims of the support provided and to take the needs of both carers and cared-for persons into account.
This article describes and analyses public support for Swedish unpaid carers, now mandated by law, and also the support that they desire, using surveys conducted in 2008, 2009, and later. Few carers helping someone in a different household – the large majority of the carers – received any support aimed directly at them, such as access to support groups, training, relief service, or financial support. Yet, most carers did not desire any support for themselves. They mostly wanted public services for the cared-for person, all of which may also indirectly support carers. Intra-household carers – about a tenth of all carers – have vastly larger care commitments than other carers. Some of them desire support for themselves, usually relief services of financial support. Three out of 10 of these carers used any public support, despite the new (2009) legislation that only a minority of carers know about. There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support for themselves. The relationship between carers and the state is unclear in Sweden and this reflects on the aims and the forms of support. Stereotypes about 'typical' carers may have impeded adequate forms of support.
Caring for Elder Parents: A Comparative Evaluation of Family Leave Laws
As the baby boomer generation ages, the need for laws to enhance quality of life for the elderly and meet the increasing demand for family caregivers will continue to grow. This paper reviews the national family leave laws of nine major OECD countries (Canada, Denmark, France, Germany, Italy, Japan, Netherlands, Spain, and the United Kingdom) and provides a state-by-state analysis within the U.S. We find that the U.S. has the least generous family leave laws among the nine OECD countries. With the exception of two states (California and New Jersey), the U.S. federal Family Medical Leave Act of 1993 provides no right to paid family leave for eldercare. We survey the current evidence from the literature on how paid leave can impact family caregivers' employment and health outcomes, gender equality, and economic arguments for and against such laws. We argue that a generous and flexible family leave law, financed through social insurance, would not only be equitable, but also financially sustainable.
Caring situation and provision of Web based support for young persons who support family members or close friends with mental illness
Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support.
Caring situation and provision of web-based support for young persons who support family members or close friends with mental illness
Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support
Akad. avh.
Childhood exposure to violence and lifelong health: Clinical intervention science and stress-biology research join forces
Many young people who are mistreated by an adult, victimized by bullies, criminally assaulted, or who witness domestic violence react to this violence exposure by developing behavioral, emotional, or learning problems. What is less well known is that adverse experiences like violence exposure can lead to hidden physical alterations inside a child's body, alterations that may have adverse effects on life-long health. We discuss why this is important for the field of developmental psychopathology and for society, and we recommend that stress-biology research and intervention science join forces to tackle the problem. We examine the evidence base in relation to stress-sensitive measures for the body (inflammatory reactions, telomere erosion, epigenetic methylation, and gene expression) and brain (mental disorders, neuroimaging, and neuropsychological testing). We also review promising interventions for families, couples, and children that have been designed to reduce the effects of childhood violence exposure. We invite intervention scientists and stress-biology researchers to collaborate in adding stress-biology measures to randomized clinical trials of interventions intended to reduce effects of violence exposure and other traumas on young people.
Childhood socio-economic status, school failure and drug abuse: a Swedish national cohort study
AIM: To investigate whether socio-economic status (SES) in childhood and school failure at 15 years of age predict illicit drug abuse in youth and young adulthood. DESIGN, SETTING AND PARTICIPANTS: Register study in a Swedish national cohort born 1973-88 (n = 1,405,763), followed from age 16 to 20-35 years. Cox regression analyses were used to calculate hazard ratios (HR) for any indication of drug abuse. MEASUREMENTS: Our outcomes were hospital admissions, death and criminality associated with illicit drug abuse. Data on socio-demographics, school grades and parental psychosocial problems were collected from censuses (1985 and 1990) and national registers. School failure was defined as having mean school grades from the final year in primary school lower than -1 standard deviation and/or no grades in core subjects. FINDINGS: School failure was a strong predictor of illicit drug abuse with an HR of 5.87 (95% CI: 5.76-5.99) after adjustment for age and sex. Childhood SES was associated with illicit drug abuse later in life in a stepwise manner. The lowest stratum had a HR of 2.28 (95% CI: 2.20-2.37) compared with the highest stratum as the reference, when adjusted for other socio-demographic variables. In the fully adjusted model, the effect of SES was greatly attenuated to an HR of 1.23 (95% CI: 1.19-1.28) in the lowest SES category, while the effect of school failure remained high with an HR of 4.22 (95% CI: 4.13-4.31). CONCLUSIONS: School failure and childhood socio-economic status predict illicit drug abuse independently in youth and young adults in Sweden.
Childhood socioeconomic status, school failure, and drug abuse - a Swedish national cohort study
We examined prevalence of parental deaths among former out-of-home care youths at age 18 and 25, and odds of parental loss compared with peers from similar socio-economic childhood backgrounds. The study utilized Swedish national register data for 12 entire birth cohorts (1972–1983), 35 550 former out-of-home care youths and 1 138 726 cohort peers without out-of-home care experiences. Logistic regression models were used to compute odds ratios for parental loss through death.
It was especially common among former residents of long-term out-of-home care to be motherless (11%), fatherless (11–13%) or orphaned (3–4%) at age 18, compared with non-foster care peers (1%, 3% and 0.03%). Twenty-six per cent had lost at least one parent (4% among non-foster care peers). At age 25, the figures had increased considerably; 36% had lost at least one parent, compared with 7% in the majority population. Adjusted odds ratios for parental loss among long-term care youth were strikingly high, particularly for having a deceased mother. In short-term and intermediate care, most youths with deceased parents had suffered parental loss before entering foster care. For youth from long-term care, parental death after start of placement was most common.
Children’s voices – Differentiating a child perspective from a child’s perspective. Developmental Neurorehabilitation
Objective: The aim of this paper was to discuss differences between having a child perspective and taking the child's perspective based on the problem being investigated.
Methods: Conceptual paper based on narrative review.
Results: The child's perspective in research concerning children that need additional support are important. The difference between having a child perspective and taking the child's perspective in conjunction with the need to know children's opinions has been discussed in the literature. From an ideological perspective the difference between the two perspectives seems self-evident, but the perspectives might be better seen as different ends on a continuum solely from an adult's view of children to solely the perspective of children themselves. Depending on the research question, the design of the study may benefit from taking either perspective. In this article, we discuss the difference between the perspectives based on the problem being investigated, children's capacity to express opinions, environmental adaptations and the degree of interpretation needed to understand children's opinions.
Conclusion: The examples provided indicate that children's opinions can be regarded in most research, although to different degrees.
Code sets for everyday life situations of children aged 0-6: Sleeping, mealtimes, and play.A study based on the International Classification of Functioning, Disability and Health for Children and Youth
Introduction: The complexity of the Child and Youth version of the International Classification of Functioning, Disability and Health, the ICF-CY, is a challenge for occupational therapists and other professionals in clinical work. Code sets including only essential categories help to make it more user-friendly. Thus far, code sets have been developed to reflect functioning for children in different developmental periods. However, there are no code sets that support screening of participation in everyday life situations and can be used across diagnoses. This exploratory study is the first attempt to develop code sets for preschoolers' (age 0–6 years) everyday life situations.
Method: Using sequential Delphi processes with expert panels consisting of 35 professionals in five interdisciplinary early intervention teams and six parents of children, the study identified content in three code sets: Sleeping, Mealtimes and Play.
Results: A limited number of relevant categories were identified for three code sets: Sleeping (12), Mealtimes (21) and Play (30). Findings suggested a professional focus on Environmental factors compared with a parental focus on Body functions.
Conclusion: It is important to consider the opinions of all involved when developing code sets to provide a common framework for screening of children's everyday functioning.
Combined individual cognitive behavior therapy and parent training for childhood depression: 2- to 3-year follow-up
Fourteen children with significant depressive symptoms from an open clinical trial of Primary and Secondary Control Enhancement Training augmented with Caregiver–Child Relationship Enhancement Training, participated in a 2- to 3-year follow-up assessment. The results suggested that the significant decreases in depressive symptoms observed at posttreatment were maintained at 2- to 3-year follow-up. Mothers' reports of significant improvement of child psychosocial functioning were also maintained, providing social validation of the effects. Pretreatment child-rated mother-child relations predicted depressive symptoms at 2- to 3-year follow-up. These long-term data support the use of the combined intervention and suggest the need for further research on caregiver involvement in treatment. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)
Combined Individual Cognitive Behavior Therapy ang Parent Training for Childhood Depression: 2-to 3-year Follow Up.
Combined Individual Cognitive Behavior Therapy ang Parent Training for Childhood Depression: 2-to 3-year Follow Up.
Combining paid work and family care
As populations around the world age, increasing efforts are required from families and governments to secure care and support for older and disabled people. Furthermore, both women and men are expected to work later into life. Taken together, these two facts have made the relationship between work and care a burning issue for social and employment policy as well as for those working toward economic sustainability. Emphasizing the lessons that can be learned from individual experiences, this book widens current debates on these topics, bringing the experiences of individuals who support older, disabled, or chronically ill partners, relatives, or children to the discussion table.
Commentary on in-home monitoring support for dementia caregivers: Feasibility study
Comments on an article by Kristine Williams, Anne Arthur, Michelle Niedens, Lois Moushey, Lewis Hutfles (see record 2013-14270-001). Williams et al. assessed the feasibility of a telehealth intervention to support family caregivers of persons with dementia in home settings. The authors identify two major concerns of family caregivers: how to best communicate with the person with dementia and how to cope with disruptive behaviors. They list three types of disruptive behaviors: vocalizations, wandering, and physical aggression. Both communication problems and coping with disruptive behaviors are potential sources of increased caregiver stress and increased caregiver burden. William et al. describe an individualized approach using telehealth technologies to connect the family caregiver to an interdisciplinary team with expertise in dementia care. The use of technology as described by the authors facilitates provision of timely information to the family caregiver. The family caregiver does not have to wait until a visit to the healthcare provider to discuss issues with communication and behavior management; weekly feedback is provided.
Commentary on in-home monitoring support for dementia caregivers: Feasibility study
Comments on an article by Kristine Williams, Anne Arthur, Michelle Niedens, Lois Moushey, Lewis Hutfles (see record 2013-14270-001). Williams et al. assessed the feasibility of a telehealth intervention to support family caregivers of persons with dementia in home settings. The authors identify two major concerns of family caregivers: how to best communicate with the person with dementia and how to cope with disruptive behaviors. They list three types of disruptive behaviors: vocalizations, wandering, and physical aggression. Both communication problems and coping with disruptive behaviors are potential sources of increased caregiver stress and increased caregiver burden. William et al. describe an individualized approach using telehealth technologies to connect the family caregiver to an interdisciplinary team with expertise in dementia care. The use of technology as described by the authors facilitates provision of timely information to the family caregiver. The family caregiver does not have to wait until a visit to the healthcare provider to discuss issues with communication and behavior management; weekly feedback is provided.
Complicated grief in children
Daily life of persons with dementia and their spouses supported by a passive positioning alarm
Det nya samhällskontraktet
Diagnostic and Statistical Manual of Mental Disorders, 5th Edition
This new edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5®), used by clinicians and researchers to diagnose and classify mental disorders, is the product of more than 10 years of effort by hundreds of international experts in all aspects of mental health. Their dedication and hard work have yielded an authoritative volume that defines and classifies mental disorders in order to improve diagnoses, treatment, and research.
The criteria are concise and explicit, intended to facilitate an objective assessment of symptom presentations in a variety of clinical settings—inpatient, outpatient, partial hospital, consultation-liaison, clinical, private practice, and primary care. New features and enhancements make DSM-5® easier to use across all settings:
The chapter organization reflects a lifespan approach, with disorders typically diagnosed in childhood (such as neurodevelopmental disorders) at the beginning of the manual, and those more typical of older adults (such as neurocognitive disorders) placed at the end. Also included are age-related factors specific to diagnosis.
The latest findings in neuroimaging and genetics have been integrated into each disorder along with gender and cultural considerations.
The revised organizational structure recognizes symptoms that span multiple diagnostic categories, providing new clinical insight in diagnosis.
Specific criteria have been streamlined, consolidated, or clarified to be consistent with clinical practice (including the consolidation of autism disorder, Asperger's syndrome, and pervasive developmental disorder into autism spectrum disorder, the streamlined classification of bipolar and depressive disorders, the restructuring of substance use disorders for consistency and clarity, and the enhanced specificity for major and mild neurocognitive disorders).
Dimensional assessments for research and validation of clinical results have been provided.
Both ICD-9-CM and ICD-10-CM codes are included for each disorder, and the organizational structure is consistent with the new ICD-11 in development.
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, is the most comprehensive, current, and critical resource for clinical practice available to today's mental health clinicians and researchers of all orientations. The information contained in the manual is also valuable to other physicians and health professionals, including psychologists, counselors, nurses, and occupational and rehabilitation therapists, as well as social workers and forensic and legal specialists.
Differences in social support of caregivers living with partners suffering from COPD or dementia
BACKGROUND: Future patients with chronic diseases will probably remain longer in their homes. To enable family caregivers to meet these challenges, public services and informal support are essential. OBJECTIVES: This study compared social support between home-dwelling caregivers of partners with chronic obstructive pulmonary disease or dementia. METHODS: A cross-sectional study of 206 caregivers. Professional aid was quantified by the services utilised. Informal support from family and friends was rated by the number of helping persons and the degree of social withdrawal. The Medical Outcomes Study Social Support Survey Form captured perceived social support. RESULTS: For both diseases, increased severity correlated with more utilisation of professional aid. The chronic obstructive pulmonary disease group perceived more social support, reported less social withdrawal and higher numbers of helping persons. Ill partners' aggressive behaviour reduced perceived support. The use of professional aid was negatively associated with the ill partner's level of self-care, and positively correlated with social withdrawal. Professional aid was more utilised by the dementia group and by men. CONCLUSIONS: Differences in caregivers' needs for social support were related to their partner's disease. IMPLICATIONS FOR PRACTICE: Counteracting social withdrawal, considering type of illness and gender differences may increase the quality of informal care.
Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: Design of a randomized controlled trial
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 the Incredible Years parent training to modify disruptive and prosocial child behavior: A meta-analytic review
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.
Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome
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 web-based stroke education program on recurrence prevention behaviors among stroke patients: a pilot study.
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.
En erfarenhet rikare?: En kvalitativ studie av barns strategier och barnfattigdomens villkor i välfärdsstaten
Under det senaste decenniet har barnfattigdom kommit att bli en alltmer framträdande problematik på den politiska agendan i Sverige. Forskning om barnfattigdom har ofta utgjorts av kartläggningar och statistiska data varför forskning om barns vardagsliv och erfarenheter i relation till ekonomisk utsatthet har efterfrågats såväl nationellt som internationellt. Syftet med avhandlingen har varit att utforska och analysera barns erfarenheter av fattigdom som en del av deras identitetsskapande samt synliggöra hur deras aktörskap kan förstås som en strategi för att hantera sin situation. Hur barnfattigdom och barnpositionen i stort förstås och framställs i en välfärdsstatlig kontext blir en relevant aspekt av dessa processer.
Analysen är baserad på en intervjustudie med 17 deltagande barn och ungdomar i åldrarna 6-18 år i familjer som är eller har varit berättigade till ekonomiskt bistånd. Syftet med intervjuerna har varit att se hur dessa barn och ungdomar upplever och hanterar ekonomisk utsatthet hemma och bland jämnåriga med fokus på deras strategier och utrymme att vara sociala aktörer. Avhandlingens teoretiska utgångspunkt är barndomssociologi och empiriska data är analyserade med en interaktionistisk ansats som belyser interaktionens betydelse och individuellt aktörskap i relation till identitetsskapande.
De strategier som deltagarna i studien ger uttryck för har tolkats utifrån en barndomssociologisk förståelse av barnpositionens begränsade handlingsutrymme, och hur deras (och andras) positionering av dem själva som barn kan skapa nya förståelser av hur fattigdomen kan hanteras. Härigenom möjliggörs en utökad problematisering av barnfattigdom genom att problematikens komplexitet belyses.
- See more at: http://www.skolporten.se/forskning/avhandling/en-erfarenhet-rikare-en-kvalitativ-studie-av-barns-strategier-och-barnfattigdomens-villkor-i-valfardsstaten/#sthash.PWtBMqSc.dpuf
Epigenetic Transmission of Holocaust Trauma: Can Nightmares Be Inherited?
The Holocaust left its visible and invisible marks not only on the survivors, but also on their children. Instead of numbers tattooed on their forearms, however, they may have been marked epigenetically with a chemical coating upon their chromosomes, which would represent a kind of biological memory of what the parents experienced. as a result, some suffer from a general vulnerability to stress while others are more resilient. Previous research assumed that such transmission was caused by environmental factors, such as the parents' childrearing behavior. New research, however, indicates that these transgenerational effects may have been also (epi) genetically transmitted to their children. Integrating both hereditary and environmental factors, epigenetics adds a new and more comprehensive psychobiological dimension to the explanation of transgenerational transmission of trauma. Specifically, epigenetics may explain why latent transmission becomes manifest under stress. a general theoretical overview of epigenetics and its relevance to research on trauma transmission is presented.
Epigenetic Transmission of Holocaust Trauma: Can Nightmares Be Inherited?
The Holocaust left its visible and invisible marks not only on the survivors, but also on their children. Instead of numbers tattooed on their forearms, however, they may have been marked epigenetically with a chemical coating upon their chromosomes, which would represent a kind of biological memory of what the parents experienced. as a result, some suffer from a general vulnerability to stress while others are more resilient. Previous research assumed that such transmission was caused by environmental factors, such as the parents' childrearing behavior. New research, however, indicates that these transgenerational effects may have been also (epi) genetically transmitted to their children. Integrating both hereditary and environmental factors, epigenetics adds a new and more comprehensive psychobiological dimension to the explanation of transgenerational transmission of trauma. Specifically, epigenetics may explain why latent transmission becomes manifest under stress. a general theoretical overview of epigenetics and its relevance to research on trauma transmission is presented.
Epigenetic Transmission of Holocaust Trauma: Can Nightmares Be Inherited?
The Holocaust left its visible and invisible marks not only on the survivors, but also on their children. Instead of numbers tattooed on their forearms, however, they may have been marked epigenetically with a chemical coating upon their chromosomes, which would represent a kind of biological memory of what the parents experienced. as a result, some suffer from a general vulnerability to stress while others are more resilient. Previous research assumed that such transmission was caused by environmental factors, such as the parents' childrearing behavior. New research, however, indicates that these transgenerational effects may have been also (epi) genetically transmitted to their children. Integrating both hereditary and environmental factors, epigenetics adds a new and more comprehensive psychobiological dimension to the explanation of transgenerational transmission of trauma. Specifically, epigenetics may explain why latent transmission becomes manifest under stress. a general theoretical overview of epigenetics and its relevance to research on trauma transmission is presented.
Ett bra liv förutsätter att föräldrarna är rätt så aktiva” - Föräldrars perspektiv vid LSS-handläggning för barn
The aim of this study was to describe and understand parents' perspectives in aid assessment for children according to The Swedish Act (1993:387) concerning Support and Service for Persons with Certain Functional Impairments (Lag 1993:387 om stöd och service till vissa funktionshindrade, LSS). The study took place in the county of Kronoberg, Sweden, and was based on a total of nine qualitative interviews. Four interviews were made with parents' of children who has interventions according to LSS (1993:387) and five interviews were made with LSS case workers. In our study we saw that parents' perspectives often is the largest amount of information that case workers take into account when assessing aid and as a case worker you listen to the parents perspectives to capture the child's and the family's needs. It also came clear that the parents' perspective is not only about the child's needs, but also includes the parent's own needs and their family's needs. The parents in the study felt that they made the decision about the choice of aid and considered themselves as the one who decides the family's requirements. It turned out that treatment and understanding from the case workers was important for gaining access to the best help and making parents feel listened to. Parental responsibility was of great importance for the assessment, and it often led to disagreement between parents and case workers. During the study, we saw that power existed in the relationship between case workers and parents, but that it could be moved and changed during the time of aid assessment.
Everyday Life of Young Adults With Intellectual Disabilities: Inclusionary and Exclusionary Processes Among Young Adults of Parents With Intellectual Disability
Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and family, and considered their families as a resource for their empowerment and development of resilience. The study participants' informal networks were composed of only a few individuals who, moreover, were mostly of dissimilar age and also included support professionals. The participants typically described themselves as excluded from others, an experience that was articulated most conspicuously in their narratives about the special schools they were attending.
Examining the impact of familiarity on faucet usability for older adults with dementia
Background: Changes in cognition caused by dementia can significantly alter how a person perceives familiarity, impacting the recognition and usability of everyday products. A person who is unable to use products cannot autonomously complete associated activities, resulting in increased dependence on a caregiver and potential move to assisted living facilities. The research presented in this paper hypothesised that products that are more familiar will result in better usability for older adults with dementia. Better product usability could, in turn, potentially support independence and autonomy. Methods: This research investigated the impact of familiarity on the use of five faucet designs during 1309 handwashing trials by 27 older adults, who ranged from cognitively intact to the advanced (severe) stages of dementia. Human factors methods were used to collect empirical and self-reported data to gauge faucets' usability. Participants' data were grouped according to cognition (i.e., no/mild, moderate, or severe dementia). Logistic regression, ranking by odds, and Wald tests of odds ratios were used to compare performance of the three groups on the different faucets. Qualitative data were used in the interpretation of quantitative results. Results: Results indicated that more familiar faucets correlated with lower levels of assistance from a caregiver, fewer operational errors, and greater levels of operator satisfaction. Aspects such as the ability to control water temperature and flow as well as pleasing aesthetics appeared to positively impact participants' acceptance of a faucet. The dual lever design achieved the best overall usability. Conclusions: While work must be done to expand these findings to other products and tasks, this research provides evidence that familiarity plays a substantial role in product usability for older adults that appears to become more influential as dementia progresses. The methods used in this research could be adapted to analyse usability for other products by older adults with dementia.
Executive functions
Executive functions (EFs) make possible mentally playing with ideas; taking the time to think before acting; meeting novel, unanticipated challenges; resisting temptations; and staying focused. Core EFs are inhibition [response inhibition (self-control--resisting temptations and resisting acting impulsively) and interference control (selective attention and cognitive inhibition)], working memory, and cognitive flexibility (including creatively thinking "outside the box," seeing anything from different perspectives, and quickly and flexibly adapting to changed circumstances). The developmental progression and representative measures of each are discussed. Controversies are addressed (e.g., the relation between EFs and fluid intelligence, self-regulation, executive attention, and effortful control, and the relation between working memory and inhibition and attention). The importance of social, emotional, and physical health for cognitive health is discussed because stress, lack of sleep, loneliness, or lack of exercise each impair EFs. That EFs are trainable and can be improved with practice is addressed, including diverse methods tried thus far.
Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers
AIMS AND OBJECTIVES: In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia.
BACKGROUND: One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective.
METHODS: Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective.
RESULTS: The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed.
CONCLUSIONS: Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns.
IMPLICATIONS FOR PRACTICE: Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers
Experiences with using information and communication technology to build a multi-municipal support network for informal carers
This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.
Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study
BACKGROUND: Family caregivers in palliative care often report feeling
insufficiently prepared to handle the caregiver role. Preparedness has been
confirmed as a variable that may actually protect family caregiver well-being.
Preparedness refers to how ready family caregivers perceive they are for the
tasks and demands in the caregiving role.
AIM: The aim of this study was to explore factors associated with preparedness
and to further investigate whether preparedness is associated with caregiver
outcomes.
DESIGN: This was a correlational study using a cross-sectional design.
SETTING/PARTICIPANTS: The study took place in three specialist palliative care
units and one haematology unit. A total of 125 family caregivers of patients with
life-threatening illness participated.
RESULT: Preparedness was significantly associated with higher levels of hope and
reward and with a lower level of anxiety. In contrast, preparedness was not
associated with depression or health. Being female and cohabiting with the
patient were significantly associated with a higher level of preparedness. The
relationship to the patient was significantly associated with preparedness, while
social support, place of care, time since diagnosis and age of the patients
showed no association.
CONCLUSION: Feelings of preparedness seem to be important for how family
caregivers experience the unique situation when caring for a patient who is
severely ill and close to death. Our findings support the inclusion of
preparedness in support models for family caregivers in palliative care.
Psycho-educational interventions could preferably be designed aiming to increase
family caregiver's preparedness to care, including practical care, communication
and emotional support.
Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study.
BACKGROUND:
Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role.
AIM:
The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes.
DESIGN:
This was a correlational study using a cross-sectional design.
SETTING/PARTICIPANTS:
The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated.
RESULT:
Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association.
CONCLUSION:
Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.
Factors influencing burden among non-professional immigrant caregivers: a case-control study
gallart a., cruz f. & zabalegui a. (2013) Factors influencing burden among non-professional immigrant caregivers: a casecontrol study. Journal of Advanced Nursing69(3), 642654. doi: 10.1111/j.1365-2648.2012.06049.x Abstract Aim. To identify factors related to the burden that is experienced by untrained immigrant caregivers. Background. There is growing concern about how to provide the care required by an ageing population. Although elder care has usually been provided by family members, this role is increasingly being fulfilled by immigrant caregivers with no formal training. Design. Casecontrol study (burdened/non-burdened according to the Zarit Burden Interview). Methods. The study took place between May 2005October 2009. Anonymous questionnaires were distributed to 110 immigrant caregivers and their corresponding older care recipients (n=110), who were receiving care in their homes in Barcelona (Spain). The questionnaires included measures of burden, social support, quality of life and social integration, and items about the physical/psychological status of the care recipient and the nature of the care tasks. Two groups of immigrant caregivers were defined according to their scores on the Zarit Burden Interview: burdened (n=55) and non-burdened (n=55). Results. Burdened caregivers reported less social support, a poorer quality of life, and problems with social integration. Furthermore, 48% said that they lacked knowledge about the care task, while 44% had difficulty performing certain care tasks, which constitutes a risk situation. Conclusion. Burden among untrained immigrant caregivers may be reduced by improving their social support systems and quality of life, thereby helping to ensure the availability of the caregiver services, which society increasingly needs.
Familjehemsföräldrars erfarenheter av Paired Reading med placerade barn
The academic underachievement of looked after children is well known. By involving foster
carers in a Paired Reading intervention a Swedish project tried to address this issue,
replicating a successful British trial. The aim of my thesis was to study the variations in the
foster carers' experiences of this literacy intervention. Reading reports from 100 children
were collected and qualitative interviews with 15 foster parents were analyzed using concepts
from motivational psychology. The results revealed that although some had reported
difficulties a majority of the participants had implemented the program in an acceptable way.
Many carers had noticed improvements in the child's reading ability and some reported
improved relations, but in a few cases rigidly following the method had led to conflicts. The
interviews showed that the completion of the literacy training was conditioned on the
children's pleasure/joy in reading which in turn may require adjustments in the day-to-day
delivery of the intervention. Also carers had to see a purpose with Paired Reading in order to
be able to arouse enthusiasm in the child. The results suggest that it is possible to engage
foster parents in the improvement of foster children's literacy skills.
Family Bereavement Program (FBP) approach to promoting resilience following the death of a parent
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.
Fetal Alcohol Spectrum Disorders
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).
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.
Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson