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Concordance of Family and Staff Member Reports About End of Life in Assisted Living and Nursing Homes

Rich SE, Williams CS, Zimmerman S. (2010)

Purpose: To identify differences in perspectives that may complicate the process of joint decision making at the end of life, this study determined the agreement of family and staff perspectives about end-of-life experiences in nursing homes and residential care/assisted living communities and whether family and staff roles, involvement in care, and interaction are associated with such agreement. Design and Methods: This cross-sectional study examined agreement in 336 family-staff pairs of postdeath telephone interviews conducted as part of the Collaborative Studies of Long-Term Care. Eligible deaths occurred in or within 3 days of leaving one of a stratified random sample of 113 long-term care facilities in four states and after the resident had lived in the facility 15 days of the last month of life. McNemar p values and kappas were determined for each concordance variable, and mixed logistic models were run. Results: Chance-adjusted family-staff agreement was poor for expectation of death within weeks (66.9% agreement, k = .33), course of illness (62.9%, 0.18), symptom burden (59.6%, 0.18), and familiarity with resident's physician (59.2%, 0.05). Staff were more likely than family to expect death (70.2% vs 51.5%, p /BFM1XC8|END .001) and less likely to report low symptom burden (39.6% vs 46.6%, p = .07). Staff involvement in care related to concordance and perspectives of adult children were more similar to those of staff than were other types of family members. Implications: Family and staff perspectives about end-of-life experiences may differ substantially; efforts can be made to improve family-staff communication and interaction for joint decision making.

Conditions for relatives´ involvement in nursing homes

Holmgren, J. (2015)

The overall aim of this thesis was to describe and analyse how the involvement of relatives is conditioned in nursing homes from different critical perspectives. Gender perspectives, discourse analysis and intersectional theory are applied, based on social constructionist ontology. The thesis comprises three qualitative papers and data are based on ethnographically-focused fieldwork in three municipal nursing homes in the form of formal/informal interviews, participating observations and the analysis of documents.

Based on gender perspectives, the routines and reasonings among nursing staff were studied and thematically analysed in relation to how these conditioned the involvement of relatives in the daily caring activities (I). In the second study (II), the nursing staff were interviewed in groups to describe, discursively analyse and identify the biopolitical meaning in the "involvement discourse" that was collectively constructed in the speech of the nursing staff concerning the involvement of relatives. In the last study (III), interviews with relatives were thematically analysed in the context of intersectional theory about their involvement in the nursing homes.

The findings show that the conditions for relatives' involvement were dynamic and constantly in re-negotiation, but also conservative and inflexible. This placed relatives in both privileged and unprivileged social positions in the nursing homes, which were relevant for their involvement. The relatives were considered to be "visitors", which conditioned the characteristics and levels of involvement in the care of the residents and was linked to gendered notions of the division of labor, both within the groups of relatives and between nursing staff and relatives (I). The involvement of relatives was conditioned by the biopolitics of an "involvement discourse" that prevailed in the nursing homes. This built upon family-oriented rhetorics and metaphors that upheld and legitimised notions about relatives. The relatives were considered to be members of the "old" family in relation to the "new" family represented by the nursing staff (II). The relatives described how they were positioned in a betweenship, squeezed between different competing social musts from the older family members, the nursing homes as institutions and the nursing staff (III).

Inverting the prevailing picture of the involvement of relatives would make it possible to consider the nursing staff as pedagogical, professional and caring "visitors" in the nursing homes for the benefit of the residents and their relatives. This could be achieved through a constructive change management which emphasises the learning of nursing staff, their responsibility and the emotions of relatives, along with a focus on alternative notions of involvement, where relatives are included in the development of quality of care in Swedish nursing homes.

Conformity and resistance in Self-Management Strategies of ‘Good Girls’.

Sanders, J., & Munford, R., (2008)

This article examines how girls manage challenging encounters with non-familial adults. Drawing on a subset of qualitative data collected as part of a larger ethnographic study, it examines the ways girls maintain a strong sense of self as a good person in the face of interpersonal challenge from these non-familial adults. The discourse of the 'good girl' allows them to resist excessive demands of adults and provides opportunities to have fun. The importance of the parent—child relationship in terms of providing a safe context from which the girls can generate the good and bad girl facades is also highlighted.

Connecting Children: Care and Family Life in Later Childhood.

Brannen J, Heptinstall E, Bhopal K. (2000)

Connecting Children focuses on children's understandings of care and their views of different family lives. It portrays the lives of children aged 11-12 and shows how families connect children in different ways both in the household but also in their wider kinship networks. The children studied reflect upon family life and especially upon situations where their own family lives change dramatically, such as when parents divorce or are unable to care for them.
This book will be of interest to those working in education, social work, child care, counselling, social policy and childhood studies.

Consumer and carer participation in mental health care: The carer’s perspective: Part 2 – barriers to effective and genuine participation

Goodwin, V. and B. Happell (2007)

Family members and significant others provide significant proportions of unpaid care for people experiencing a mental illness. Although the carer role is pivotal to contemporary mental health service delivery, the role of carers and the issues they face have received only scant attention in the literature. This paper presents the second part of the findings of an exploratory, qualitative inquiry, which sought greater understanding of carers' experiences of, and attitudes to opportunities for participation in care and treatment at an individual or systemic level, with particular emphasis on the role of psychiatric nurses in encouraging or discouraging participation. This paper explores the theme of systemic barriers to participation. These findings demonstrate the variable experiences of carers in their opportunities to participate and the important role nurses can assume in supporting carers' increased participation in the mental health care for their relative or significant other.

Consumption of psychotropic drugs among adults who were in societal care during their childhood

Vinnerljung B & Hjern A (2014)

BACKGROUND:
Previous studies have demonstrated greatly increased risks of severe psychiatric morbidity for former child welfare clients. We investigated psychotropic medication in this population as a proxy indicator of less severe mental health problems.
METHODS:
This register-based cohort study comprises the Swedish birth cohorts between 1973 and 1981, 765,038, including 16,986 former children from societal care and 1296 national adoptees. Estimates of risk of retrieval of prescribed psychotropic medications during 2009 were calculated in four categories (any such drug, neuroleptics, antidepressants and anxiolytics/hypnotics) as hazard ratios (HRs) with 95% confidence intervals (CIs) using Cox regression analysis, adjusting for birth parental background including psychiatric morbidity.
RESULTS:
17-25% of men and 25-32% of the women with childhood experiences of societal care retrieved at least one prescription of a psychotropic drug, equivalent to age-adjusted HRs of between 2.1 and 3.3, compared with the general population. Adjusting the analysis for birth parental confounders attenuated risks to between 1.5 and 2.7, depending on subgroup and sex. Men-especially those that entered care settings during their teens-tended to have higher risks of all outcomes. Adjusted HRs for national adoptees were similar to former children in care.
CONCLUSIONS:
Former residents of societal care are a high-risk group for mental health problems well into mature adult age, demonstrating the need for systematic screening and implementation of effective prevention/treatment during time in care.

Consumption of psychotropic drugs among adults who were in societal care during their childhood

Vinnerljung B & Hjern A (2014)

BACKGROUND:
Previous studies have demonstrated greatly increased risks of severe psychiatric morbidity for former child welfare clients. We investigated psychotropic medication in this population as a proxy indicator of less severe mental health problems.
METHODS:
This register-based cohort study comprises the Swedish birth cohorts between 1973 and 1981, 765,038, including 16,986 former children from societal care and 1296 national adoptees. Estimates of risk of retrieval of prescribed psychotropic medications during 2009 were calculated in four categories (any such drug, neuroleptics, antidepressants and anxiolytics/hypnotics) as hazard ratios (HRs) with 95% confidence intervals (CIs) using Cox regression analysis, adjusting for birth parental background including psychiatric morbidity.
RESULTS:
17-25% of men and 25-32% of the women with childhood experiences of societal care retrieved at least one prescription of a psychotropic drug, equivalent to age-adjusted HRs of between 2.1 and 3.3, compared with the general population. Adjusting the analysis for birth parental confounders attenuated risks to between 1.5 and 2.7, depending on subgroup and sex. Men-especially those that entered care settings during their teens-tended to have higher risks of all outcomes. Adjusted HRs for national adoptees were similar to former children in care.
CONCLUSIONS:
Former residents of societal care are a high-risk group for mental health problems well into mature adult age, demonstrating the need for systematic screening and implementation of effective prevention/treatment during time in care.

Contemporary home-based care : encounters, relationships and the use of distance-spanning technology

Wälivaara, B.-M. (2012)

Encounters and relationships are basic foundations of nursing care and the preconditions for these foundations are changing along with a change in healthcare towards an increase of home-based care. In this development the use of distance-spanning technology is becoming increasingly common. There is a need to develop more knowledge and a theory base about the role of the encounter and the relationship in home-based care. Most studies so far cover the topic in the context of hospital care. There is also need to develop more knowledge of experiences of distance-spanning technology in home-based care. The overall aim of this doctoral thesis was to explore home-based care with specific focus on the use of distance-spanning technology, encounters and relationships from the perspectives of persons in need of care, general practitioners (GPs) and registered nurses (RNs).
The thesis contains studies with persons in need of home-based care (n=9), general practitioners (n=17) and registered nurses (n=24). The study with RNs consisted of registered nurses (n=13) and district nurses (n=11). The data was collected through individual interviews and group interviews and were analyzed by qualitative content analysis with various degrees of interpretations.
Home-based care with mobile distance-spanning technology (MDST) was experienced as positive and it opens up possibilities, however MDST also has limitations. It was considered that MDST should be used by care professionals and not by the person in need of care or their family members. The MDST affects home-based care and the work and cooperation in home-based care. The expression was that a face-to-face encounter should be the norm and MDST cannot replace all face-to-face encounters in home-based care. MDST could work in some situation, but should be used with caution. The findings also show that good encounters in home-based nursing care contain dimensions of being personal and professional, and that the challenge is to create a good balance between these. Being together in the encounter is a prerequisite for the development of relationships and good nursing care at home is built on a trusting relationship. The relationship is a reciprocal relationship that the person and the nurse develop together and nurses have to consciously work on the relationship. It seems that a good encounter and a trusting relationship could affect the views on the use of distance-spanning technology in homebased care. The participants in the studies in general expressed positive attitude towards distancespanning technology at the same time as they expressed caution about an extensive use of it in home-based care. They highlighted the importance of positive encounters and the importance of the relationship in order to receive and provide good care and nursing care in the homes. The context of home-based care has changed and will continue to change over time. This change leads to that the use of distance-spanning technology is increasing and challenges the nurses to develop work strategies that can promote competence, caring and communication in the encounter, and building and maintaining relationships in home-based nursing care.

Controlled trial of the short- and long-term effect of psychological treatment of post-partum depression – 1. Impact on maternal mood!

COOPER, P. J., MURRAY, L., WILSON, A. & ROMANIUK, H. (2003)

Background Psychological interventions for postnatal depression can be beneficial in the short term but their longer-term impact is unknown.

Aims To evaluate the long-term effect on maternal mood of three psychological treatments in relation to routine primary care.

Method Women with post-partum depression (n=193) were assigned randomly to one of four conditions: routine primary care, non-directive counselling, cognitive—behavioural therapy or psychodynamic therapy. They were assessed immediately after the treatment phase (at 4.5 months) and at 9, 18 and 60 months post-partum.

Results Compared with the control, all three treatments had a significant impact at 4.5 months on maternal mood (Edinburgh Postnatal Depression Scale, EPDS). Only psychodynamic therapy produced a rate of reduction in depression (Structured Clinical Interview for DSM—III — R) significantly superior to that of the control. The benefit of treatment was no longer apparent by 9 months post-partum. Treatment did not reduce subsequent episodes of post-partum depression.

Conclusions Psychological intervention for post-partum depression improves maternal mood (EPDS) in the short term. However, this benefit is not superior to spontaneous remission in the long term.

Convention on the Rights of the Child

UN (1989)

The United Nations Convention on the Rights of the Child (commonly abbreviated as the CRC, CROC, or UNCRC) is a human rights treaty which sets out the civil, political, economic, social, health and cultural rights of children. The Convention defines a child as any human being under the age of eighteen, unless the age of majority is attained earlier under a state's own domestic legislation.

Nations that ratify this convention are bound to it by international law. Compliance is monitored by the UN Committee on the Rights of the Child, which is composed of members from countries around the world. Once a year, the Committee submits a report to the Third Committee of the United Nations General Assembly, which also hears a statement from the CRC Chair, and the Assembly adopts a Resolution on the Rights of the Child.

Governments of countries that have ratified the Convention are required to report to, and appear before, the United Nations Committee on the Rights of the Child periodically to be examined on their progress with regards to the advancement of the implementation of the Convention and the status of child rights in their country. Their reports and the committee's written views and concerns are available on the committee's website.

The UN General Assembly adopted the Convention and opened it for signature on 20 November 1989 (the 30th anniversary of its Declaration of the Rights of the Child). It came into force on 2 September 1990, after it was ratified by the required number of nations. Currently, 196 countries are party to it, including every member of the United Nations except the United States.

Two optional protocols were adopted on 25 May 2000. The First Optional Protocol restricts the involvement of children in military conflicts, and the Second Optional Protocol prohibits the sale of children, child prostitution and child pornography. Both protocols have been ratified by more than 150 states.

A third optional protocol relating to communication of complaints was adopted in December 2011 and opened for signature on 28 February 2012. It came into effect on 14 April 2014.

Conversation partner training with spouses of persons with aphasia: A pilot study using a protocol to trace relevant characteristics

Saldert C, Backman E, Hartelius L. (2012)

Background: Conversation partner training can be effective in improving communication in aphasia. However, there is a need for further research about effects of specific training programmes as well as about the relevant characteristics of the conversation partners who are to be candidates for training.

Aims: This pilot study explores the applicability of an adaptation of a conversation partner training programme. In addition, a protocol for assessment of variables relating to the person with aphasia and the conversation partner that may be involved in changes in conversational interaction is examined.

Methods & Procedures: Three dyads with persons with aphasia and their spouses participated in this explorative study with a case-series design. The training outcome was monitored with measures of perceived functional communication and analysis of multiple video-recorded natural conversations obtained at baseline, post intervention, and at a 12-week follow-up. Repeated measures of comprehension, word fluency, and psychological well-being were obtained as well as descriptive measures of the executive function and a profiling of attitudes and behaviour in communication in the spouses.

Outcomes & Results: All three persons with aphasia and two of the spouses reported a slight improvement in the measure of perceived functional communication. This perception of improvement was also reflected in blinded, independent assessments of ability to support communication in conversations for the two spouses who reported improvement. The profiling of the third spouse indicated problems in attitudes to communication and also in aspects of executive function, and may account for the lack of intervention effects seen in the third dyad.

Conclusions: The results show that intervention with the adapted training programme may be effective. It might be argued that the outcome measures as well as other measures fulfil their purpose. The profiling of relevant traits in the conversation partner may be useful, although the prognostic validity of the instruments needs to be further evaluated.

COPD in primary care: exploring conditions for implementation of evidence-based interventions and eHealth

Lundell, Sara (2018)

Doktorsavhandling

Abstract [en]
Chronic obstructive pulmonary disease (COPD) is a major public health problem. Symptoms and comorbidities associated with COPD affect the whole body. Clinical guidelines for COPD recommend pulmonary rehabilitation (PR) including exercise training and education promoting self-management strategies. Despite the positive effects on health status, few people with COPD have access to PR. Electronic health (eHealth) has been seen as promising for increased access to evidence-based interventions. To increase the likelihood of a successful implementation, it is important to identity enablers and barriers that might affect implementation outcomes. The aim of this thesis is to explore the experiences, interactions and contexts of the management of COPD in primary care, as well as the design, experienced relevance, effect and expected usefulness of eHealth solutions. The thesis is based on four papers that have used qualitative, quantitative and mixed methods. Qualitative interviews (papers I, II, IV) and focus group discussions (paper IV) were analysed using qualitative content analysis (papers I, IV) and grounded theory (paper II). Quantitative data, collected using questionnaires (paper I) and in a systematic review (paper III) was analysed with descriptive statistics (paper I) and meta-analysis (paper III). The qualitative and quantitative findings in paper I and II were merged in a mixed methods design. Participants in the studies included healthcare professionals (papers I, IV), people with COPD (papers II, III, IV), their relatives (paper IV), senior managers representing primary care centres (paper I), and external researchers (paper IV). The findings in this thesis gave insight in the complex interactions within COPD management between the healthcare organisation (e.g. resources and priority), healthcare professionals (e.g. attitudes, collaboration and competence) and people with COPD (e.g. emotions, attitudes and coping). The healthcare organisation is fragmented with few resources and COPD care takes low priority. The healthcare professionals are Building COPD care on shaky ground (paper I), where the shaky ground is a presentation of the non-compliant organisation and other challenging circumstances. Driven, responsible and ambitious healthcare professionals wish to provide empowering COPD interventions through interprofessional collaboration, but are inhibited by their limited knowledge of and experience with COPD. People with COPD are (Re)acting in an ambiguous interaction with primary care providers (paper II), have limited knowledge and struggle with stigma, while they try to accept and manage their disease. The attitudes and support of healthcare professionals' are essential for necessary interaction and self-management strategies. For people with COPD, this can take different paths: either enhancing confidence with empowering support or coping with disempowering stigma and threat. eHealth solutions such as telehealth, have been used to provide interventions to people with COPD through phone calls, websites or mobile phones, in combination with exercise training and/or education. They show a significant effect on physical activity level, but not on physical capacity and dyspnoea (paper III). Healthcare professionals, people with COPD and their relatives, and external researchers report that, to be useful and relevant in clinical practice, an eHealth tool should be reinforcing existing support structures (paper IV). Furthermore, it needs to fit in the current routines and contexts and create a sense of commitment in its users. According to the participants, information about selfmanagement strategies, such as how-to videos are valuable, and need to help them identify themselves with the people in the videos. The participants regard eHealth as providing knowledge and support for self-management. In conclusion, there is a need for implementation of clinical guidelines for COPD in primary care in order to improve both the management of COPD, as well as the interaction between healthcare professionals and people with COPD. Several actions are needed to facilitate this implementation. The priority and status of COPD management in primary care need to be raised. In addition, more resources (e.g. healthcare professionals) for COPD interventions is required to enhance the conditions for interprofessional collaboration and patient participation. Furthermore, it is important to include physiotherapists in COPD management, considering the focus on exercise training and physical activity. Healthcare professionals in primary care need further training and more time to educate and empower people who have COPD. The use of eHealth may lead to improvements in patient outcomes, although more research on web-based interventions is required. User involvement in the development process of an eHealth tool increases its usefulness and relevance in clinical practice and everyday life. The findings from this thesis may guide implementation processes in primary care, as well as the development of eHealth tools for people with COPD or other long-term conditions.

Coping as a caregiver: A question of strain and its consequences on life satisfaction and health-related quality of life

Dahlrup, B., Ekström, H., Nordell, E., & Elmståhl, S. (2015)

A majority of us will at some point in our lives take care of family members, relatives and friends in need of assistance. How will this affect us?

Strain related to life satisfaction (LS) and health related quality of life (HRQoL) among caregivers aged 60 years and older has not been previously studied.

Objectives
The main objective was to describe characteristics of non-caregivers (n = 2233) and caregivers (n = 369). Further objectives were to examine differences in HRQoL and LS between caregivers and non-caregivers, and between caregivers stratified by level of strain.

Methods
We analyzed the differences in socio-demographics, social participation, locus of control and symptoms between groups. HRQoL was assessed by Short Form Health Survey (SF-12/PCS and MCS). LS was measured by the Life Satisfaction Index-A (LSI-A).

Results
Caregivers were younger, had more years of formal education, more often cohabiting and relied less on powerful others than non-caregivers. One hundred and thirty-three (36%) caregivers reported high strain. In a three-group comparison including non-caregivers and caregivers stratified for strain, high strain was associated with lower SF12-PCS, SF12-MCS and LSI-A (0.014, <0.001 and <0.001, respectively).

Conclusion
High strain affects caregivers' HRQoL and LS in a negative way.

Practice
It is important for the health care sector to consider the possibility that symptoms in a person acting as a caregiver can be related to high perceived strain.

Implications
A general policy program aiming to identify caregivers and their needs for support is much needed.

Coping efficacy and psychological problems of children of divorce

Sandler, I.N, Tein, J., Mehta, P., Wolchik, S. & Ayers, T. (2000)

Three models of the relations of coping efficacy, coping, and psychological problems of children of divorce were investigated. A structural equation model using cross-sectional data of 356 nine- to twelve-year-old children of divorce yielded results that supported coping efficacy as a mediator of the relations between both active coping and avoiding coping and psychological problems. In a prospective longitudinal model with a subsample of 162 of these children, support was found for Time 2 coping efficacy as a mediator of the relations between Time 1 active coping and Time 2 internalizing of problems. Individual growth curve models over four waves also found support for coping efficacy as a mediator of the relations between active coping and psychological problems. No support was found for alternative models of coping as a mediator of the relations between efficacy and symptoms or for coping efficacy as a moderator of the relations between coping and symptoms.

Coping responses inventory: An update on research applications and validity

Moos R. (2004)

This brief self-report inventory identifies cognitive and behavioural responses the individual used to cope with a recent problem or stressful situation. The 8 scales include Approach Coping Styles (Logical Analysis, Positive Reappraisal, Seeking Guidance and Support, and Problem Solving) and Avoidant Coping Styles (Cognitive Avoidance, Acceptance or Resignation, Seeking Alternative Rewards, and Emotional Discharge). Information about reliability and validity is presented in the professional manual for each version.

The CRI can be used in in counselling, stress management education, and other settings to identify and monitor coping strategies in adults and adolescents, to develop better clinical case descriptions, and to plan and evaluate the outcome of treatment.

Two separate versions of the CRI have been developed, the CRI-Adult (older than 18 years of age) and the CRI-Youth (ages 12-18 years). Each version has its own manual and an Ideal and an Actual Form. The Ideal Form may be used to compare actual and preferred coping styles, to set treatment goals, and to monitor progress. The Actual Form surveys the individual's actual coping behaviour, whereas the Ideal Form surveys preferred coping styles. Both forms are written at a 6th-grade reading level.

Individuals complete the self-report inventory, marking answers on the answer sheet. The carbonless bottom sheet contains a scoring grid for quick and easy calculation of raw scores. The back page of the answer sheet contains a profile for determining and plotting T-scores and examining patterns of coping. Scoring and profiling take about 5 minutes.

Coping strategies of parents facing child diabetes mellitus

Azar, R., & Solomon, C. R. (2001)

This study identified differences in strategies used by mothers and fathers (N = 60) in coping with their child's insulin-dependent diabetes mellitus. The Ways of Coping Questionnaire (WCQ) was administered during a home interview. Results showed that both parents used planful problem solving, exercised positive reappraisal, and sought social support frequently, with mothers using more planful problem-solving strategies than fathers. Within the family, analyses showed that fathers were more likely to use distancing, independent of the child's sex, whereas mothers were more likely to frequently use all the coping strategies when the child was a girl. The implications of the results for nursing are discussed. Copyright © 2001 by W.B. Saunders Company

Coping with caring: Profiles of caregiving by informal carers living with a loved one who has Dementia

Kraijo H, Brouwer W, de Leeuw R, Schrijvers G, van Exel J. (2012)

Background and aim: While the number of people suffering from Dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has Dementia experience their caregiving situation. Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements. Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers. Conclusions: The findings contribute to the development of interventions for the support of informal caregivers.

Coping, Social Relations, and Communication: A Qualitative Exploratory Study of Children of Parents with Cancer

Thastum, M., Johansen, M. B., Gubba, L., Olesen, L. B., & Romer, G. (2008)

The purpose of this qualitative study of families where a parent has cancer was to explore ways of informing the child of the parent's illness, how the child perceives the parent's emotional state, how the child copes with the parent's illness, and how this coping relates to the parent's coping and concerns for the child. Twenty-one children from 15 families and their parents were interviewed. In 13 families the mother was ill, in two the father. Children were aware of the facts of the illness, but there was limited emotional communication between the generations. The children were very observant of both the ill and the healthy parent's emotional condition. The children's observations and expressions led us to identify five coping strategies the younger generation used: Helping others, parentification, distraction, keeping it in the head, and wishful thinking. Both adaptive and destructive examples of parentification were found. Communication patterns and parental coping seemed to be highly related to the child's coping repertoire. Even though most children seemed to manage rather well, all children were strongly affected by the illness. The 'healthiest' adaptation related to factors within the family system, which has implications for the provision of help.

Co-resident care-giving and problematic sleep among older people: evidence from the UK Household Longitudinal Study

Emma Maun, Karen Glaser, Laurie Corna (2019)

Abstract:
In light of current pressures within formal social care services, informal carers assume an important role in meeting the care needs of a growing number of older people. Research suggests relationships between care-giving and health are complex and not yet fully understood. Recently, wide-ranging associations between sleep and health have been identified, however, our understanding of the links between care-giving and sleep is limited at present. This study assesses longitudinal patterns in co-resident care-giving and problematic sleep among older people in the United Kingdom. Our sample included 2,470 adults aged 65 years and older from the UK Household Longitudinal Study. Problematic sleep was defined as two or more problems in going to sleep, staying asleep or sleep quality. Using logistic regression models, we assessed how co-resident care-giving status, intensity and transitions influence the likelihood of problematic sleep in the following year, adjusting for potential confounding factors. Adjusted analyses found co-resident care-givers were 1.49 (95% confidence interval = 1.06–2.08) times more likely to report problematic sleep in the following year, relative to those not providing care. Care-giving over 20 hours per week and continuous co-resident care-giving also significantly increased the odds of problematic sleep. This suggests older co-resident care-givers may be at greater risk of incurring sleep problems than non-care-givers. Further longitudinal research is needed to investigate care-giver-specific consequences of poor sleep.

Correlational and experimental study of resilience in children and parentally bereaved children

Sandler, I., Wolchik, S., Davis, C., Haine, R. & Ayers, T. (2003)

This chapter presents research on resilience of children and adolescents who have experienced two major disruptions of the nuclear family, parental divorce and parental bereavement. The two research programs share a common research paradigm in which there is an iterative relationship between correlational and experimental studies (Sandler, Wolchik, MacKinnon, Ayers, & Roosa, 1997). Correlational studies are used to identify protective and vulnerability factors, particularly those that may be modifiable by planned interventions. Experimental studies are designed on the basis of the small theory that changing these factors in the desirable direction will promote resilience. Randomized experimental trials of the interventions are conducted to test whether the intervention has changed these vulnerability and protective factors and reduced negative outcomes and whether change in negative outcomes is mediated by change in the vulnerability and protective factors (Sandler et al., 1997). The mediational analysis within the randomized trial provides a stronger test of the causal role of the vulnerability and protective factors to influence negative outcomes than is provided by the correlational studies, and thus contributes to theory about resilience (Rutter, Pickles, Murray, & Eaves, 2001).

The chapter first presents a theoretical framework that specifies alternative models of the influence of vulnerability and protective factors on the resilience of children experiencing significant adversities. We then discuss correlational research on key constructs in the theoretical framework: adversity, and child and family protective and vulnerability factors.

Cortical processing of tactile language in a postlingually deaf-blind subject

Osaki Y, Doi K, Takasawa M, Noda K, Nishimura H, Ihara A, et al. (2004)

We compared neural activation detected by magnetoencephalography (MEG) during tactile presentation of words and non-words in a postlingually deaf-blind subject and six normal volunteers. The left postcentral gyrus, bilateral inferior frontal gyri, left posterior temporal lobe, right anterior temporal lobe, bilateral middle occipital gyri were activated when tactile words were presented to the right hand of the deaf-blind subject. This set of activated regions was not observed in the normal volunteers, although activation of several combinations of these regions was detected. Positron emission tomography confirmed the location of the MEG-activated areas in the deaf-blind subject. Our results demonstrated that the deaf-blind subject is heavily involved in interpreting tactile language by enhancing cortical activation of cognitive and semantic processing. © 2004 Lippincott Williams & Wilkins.

Cortisol levels six-years efter participation in the Family Bereavement Program

Luecken, L., Hagan, M., Sandler, I.N., Tein, J., Ayers, T.S. & Wolchik, S.A. (2010)

Recent studies have found short-term adrenocortical benefits of early interventions for at-risk children. The current study evaluated the effects of the Family Bereavement Program on cortisol levels six years after the program. Parentally bereaved children were randomly assigned to the 12-week preventive intervention (n=78) or a self-study control (n=61) condition. Six years later (mean age 17.5), salivary cortisol levels were measured before and after a conflict discussion task conducted in late afternoon/early evening. The intervention group had significantly higher cortisol levels across the task compared to the control group, and lower cortisol was associated with higher externalizing symptoms. The group effect did not differ by age at the time of death, and the group difference remained significant after adjustment for pre-intervention mental health and current mental health symptoms. Results suggest that a family-focused intervention for parentally bereaved youth may have prevented the development of attenuated cortisol secretion suggestive of dysregulation and associated with externalizing problems.

Costs and Caregiver Consequences of Early Supported Discharge for Stroke Patients

Teng J, Mayo NE, Latimer E, Hanley J, Wood-Dauphinee S, Côté R, et al. (2003)

Background and Purpose— Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care.

Methods— We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home.

Results— Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group.

Conclusions— Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care.

Couples' provision of informal care for parents and parents-in-law: far from sharing equally?

Henz, U (2009)

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-inlaw. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of nonmarital cohabitation in mid-life.

Couples- versus individual-based therapy for alcohol and drug abuse: Effects on children's psychosocial functioning

Kelley ML, Fals-Stewart W. (2002)

The study compared the effect of couples-based vs individual-based therapy for men who entered outpatient substance abuse treatment on the psychosocial functioning of children in their homes. Men were randomly assigned to (1) behavioral couples therapy (BCT), (2) individual-based treatment (IBT) or (3) couples-based psychoeducational attention control treatment (PACT). For both children of alcohol (N=71) and drug-abusing men (N=64), parents' ratings of children's psychosocial functioning was higher for children whose fathers participated in BCT at posttreatment and at 6- and 12-mo follow-up than for children whose fathers participated in IBT or PACT. BCT resulted in greater improvements in parents' dyadic adjustment and fathers' substance use. Thus, couples-based intervention that addresses both issues may have greater benefits for children in these homes. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

CPICS Child and Parents’ Interaction Coding system

Hedenbro, Monica & Lidén, Anette (2001)

The aim of this thesis was to describe how early triadic interaction between the newborn child and its mother and father begins, develops, and matures over the child's first 4 years of life. Systemic family theory and developmental theory are combined to go beyond the "mother-child" dyad to the "mother-father-child" triad. Lausanne Trilogue Play (LTP, originally Lausanne Triadic Play) was developed by Elisabeth Fivaz and her learn in Lausanne, Switzerland, and used to carry out standardised studies of child-mother-father interaction. The family is placed in a triangle that allows all three partners optimal access to each other. The focus of this thesis was to describe triadic interaction when all members of the triad interact with each other. It is based on a pioneering longitudinal and prospective study. It was begun with interviews when the parents were expecting their first child. The development of triadic interaction was then monitored by repeated, videotaped LTP observations when the child was 3, 9, 18, and 48 months of age. The study is part of an international collaboration to describe the development of triadic interaction in four groups: 20 Swiss German-speaking families, 20 Swiss French-speaking families, 20 American families (Seattle, Washington, USA), and 20 Swedish families. In Sweden, consecutive Swedish-speaking couples were recruited by midwives at a maternity health care clinic in Stockholm. Twelve boys and 8 girls were born. To analyse the children's communicative skills in relation to their behaviour at age 4 years, the preschool teachers were asked to fill in the Preschool Behaviour Questionnaire (PBQ). The author developed the Child-Parents-Interaction Coding System (CPICS) to analyse quantitative and qualitative variables in triadic interaction. The CPICS was used to analyse LTP observations of the Swedish families over time and to compare the Swedish and American groups of families. One child, a girl, exhibited a typical development. At the age of 5 she was referred to a child and adolescent neuropsychiatric department where, at the age of 7 years, she was diagnosed with an autism spectrum disorder. She was excluded from the group analysis and instead presented as a case report. When the children were 3 months of age, parents held back concerning contribiltion (the starting point for a sequence of interactions) and allowed the "child's just being- to launch conversation. This pattern persisted up to 48 months, with the parents giving the child space. Types or child contributions varied over time. When the child was 3 months old, its parents treated all its behaviours as contributions for starting points of conversation, while child contributions at 48 months generally had a communicative character. Coparenting seems to set the structure for early communication by using various nonverbal, vocal, and verbal methods to support the child in turn-taking sequences. A cultural difference in the tempo of play between American and Swedish families was found. Although both groups of families interacted in a synchronized and reciprocal way, the pace of play in triadic interaction was taster in American families. Positive correlations between complex triadic interaction (number of turn-taking sequences) at 3, 9, and 18 months (significant at 9 months) and preschool teachers' assessments of children's social competence at 48 months suggest some predictive power of this variable in the assessment system. The autistic girl and her parents exhibited deviations in early triadic communication - most clearly when she was 9 months old. Findings are discussed regarding their importance concerning early interventions in the family system.

Critical Social Policy 1995

Morris, Jenny & Keith, Lois (1995)

This article looks at how the children of disabled parents are being defined as 'young carers', arguing that the way in which this is hap pening undermines both the rights of children and the rights of disabled people, Analysis of the social construction of 'children as carers' illustrates that researchers and pressure groups are colluding with the government's insistence that 'care in the community' must mean 'care by the community'.

Culturally and Linguistically Diverse (CALD) Families Dealing with Dementia: An Examination of the Experiences and Perceptions of Multicultural Community Link Workers

Boughtwood D, Shanley C, Adams J, Santalucia Y, Kyriazopoulos H, Pond D, et al. (2012)

Dementia is a chronic illness involving increasing levels of care, often provided by family members, particularly in culturally and linguistically diverse (CALD) communities. Multicultural community link workers are often the primary service providers assisting families to access health and welfare services and as such have extensive experience of, and possess in-depth knowledge about, CALD family care-giving for dementia. While research has been undertaken on dementia in CALD communities, this research has not focused on the experiences and perceptions of these multicultural workers with regards to CALD family care-giving. In response to this gap in the research, this paper presents the results of an empirical investigation of multicultural workers' perspectives with regard to the cultural traditions informing CALD family care-giving, CALD families' understandings of the term 'carer' and family arrangements regarding care. Due to their close relationship and knowledge of families, multicultural workers can offer an important perspective that is invaluable in informing the provision of carer education and support within CALD communities.

Current and residual functional disability associated with psychopathology: Findings from the Netherlands Mental Health Survey and Incidence Study (NEMESIS).

Bijl AV, Ravelli A. (2000)

Background. Few population studies have investigated the functional disabilities that accompany specific psychiatric diagnoses. This study assesses the nature and strength of current and residual impairments in various functional domains of life.
Methods. Data were derived from the Netherlands Mental Health Survey and Incidence Study (NEMESIS), a prospective study in the Dutch general population aged 18 to 64 (N = 7147). Psychiatric diagnoses were based on the Composite International Diagnostic Interview; functional disability was assessed on the basis of the Short-Form-36 and the number of disability days.
Results. Psychopathology was associated with increased disability in social, emotional and physical domains of life. Disability levels varied by psychiatric diagnosis, with mood disorders showing the poorest levels of functioning, especially for vitality and social functioning; alcohol-related disorders were associated with few disabilities. Co-morbidity strongly aggravated the disability. The effect of contextual factors on disability was limited, although somatic ill health, unemployment and adverse youth history increased the likelihood of functional disability. The findings indicate that psychopathology can also have residual debilitating effects.
Conclusions. Mental health care providers should be aware that the extent and the type of disability may vary with the different types of disorders and among different groups within the population. Since recovery from functional limitations may not be complete or may take more time than the remission of the psychiatric symptomatology, non-psychiatric follow-up care is needed. The high number of lost work days is relevant from an economic perspective. There is a need for illness-specific disability assessment instruments.

Dagboken – för dig som är ung och har någon som är sjuk i familjen

Katrin Bartfai Jansson och Bettina Edgren (2011)

Fyll-i-böcker om barnens första tid och dina vänner har blivit allt fantasifullare. De hjälper oss att fästa speciella ögonblick på papper, så att vi inte glömmer bort dem i vardagssurret. Men vad händer när vardagen försvinner? När din mamma eller pappa drabbas av en allvarlig sjukdom förändras hela livet. Många ungdomar, som varit med om det har berättat att de inte kunde prata med någon när de hade det som svårast. De som skriver dagbok får en ventil från familjens oro och ett sätt att bearbeta sina egna tankar. Men det är inte så lätt att komma igång med en dagbok.

Dagboken- för dig som är ung och har en sjuk förälder är en hjälp på vägen. Med frågor och rubriker kommer dagboksskrivandet igång. Ett yngre skolbarn kan läsa och skriva tillsammans med en vuxen, för en tonåring kan det vara en hemlig dagbok. Det finns ingen övre åldersgräns. Gott om plats för egna skriverier när du kommit igång, och för bilder.

Daglig verksamhet enligt LSS – en kartläggning

Socialstyrelsen (2008)

Daglig verksamhet är en av de tio insatserna i lagen (1993:387) om stöd och service till vissa funktionshindrade (LSS). Det är också den insats som flest personer har. Antalet personer med daglig verksamhet har ökat från 20 500 år 2000 till 25 800 år 2006. Kostnader per person i daglig verksamhet sjönk under samma tid med tio procent. Mot denna bakgrund, och på grund av att Socialstyrelsen från enskilda personer, från brukarorganisationer och från yrkesverksamma inom området har fått signaler om brister i kvaliteten, tog Socialstyrelsen initiativ till denna kartläggning av daglig verksamhet enligt LSS.

Bilden som framträder genom kartläggningen är att utbudet av aktiviteter inom den dagliga verksamheten är stort. Trots detta finns det svårigheter för kommunerna att i vissa fall finna verksamheter som passar varje enskild person.

Traditionellt har daglig verksamhet varit organiserad som gruppverksamhet i särskilda lokaler. Utvecklingen har gått mot mer flexibla former, t.ex. utflyttade grupper som finns på olika företag. Av dem som har beslut om daglig verksamhet har i dag cirka 15 procent detta i form av en individuell placering på en ordinarie arbetsplats. Variationen är dock stor mellan olika kommuner.

Kommuner organiserar sin verksamhet på olika sätt. Vilka nämnder som har ansvaret för daglig verksamhet enligt LSS varierar. Totalt sett har cirka åtta procent av dem som har daglig verksamhet detta i enskild regi. I storstadsregionerna däremot är motsvarande siffra 21 procent. Kartläggningen har inte kunnat visa på några större skillnader mellan kommunal och enskild verksamhet, när det gäller verksamhetens innehåll.

Utmaningen för den dagliga verksamheten ligger i att vidareutveckla både innehållet och formerna för verksamheten samt att öppna vägen till arbetslivet.

Socialstyrelsen kan konstatera att det övergripande målet med daglig verksamhet, att den enskilde på sikt ska kunna få möjlighet till lönearbete, inte uppfylls. Övergångar till ett sådant arbete är näst intill obefintliga. Den dagliga verksamheten riskerar att bidra till en inlåsningseffekt då andra aktörer inom arbetsmarknadspolitikens fält inte ser denna grupp som sin målgrupp. Samverkan mellan daglig verksamhet och andra arbetsmarknadspolitiska aktörer brister. Den måste utvecklas för att målet ska nås.

Traditionellt finns det god kunskap för och erfarenhet av att ge personer med utvecklingsstörning eller med ett stort omvårdnadsbehov en daglig verksamhet med god kvalitet. Det är angeläget att även denna del av verksamheten utvecklas så att inte dessa personers behov kommer i skymundan för de nya behov som ställs på verksamheten.

Daily life for young adults who care for a person with mental illness: a qualitative study

Ali, Lilas, Ahlström Hedman, Britt, Krevers, Barbro, Skärsäter, Ingela (2011)

This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16–25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concern, providing support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.

De kan, de vill och de orkar, men …: studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Gustafsson Wallengren, Catarina (2009)

Akademisk avhandling nr 17

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för närstående i deras föränderliga livssituation under de sex första månaderna efter en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter. Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående om vad det innebar att vara närstående till en person drabbad av stroke. Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs metod för kvalitativ innehållsanalys användes för att analysera data. I delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs metod för kvalitativ innehållsanalys. Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att vara närstående till en person drabbad av stroke innebar en kamp för frihet. Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser. De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade de ohälsan och dess konsekvenser i sina liv (II). Den information som närstående ville ha handlade om den strokedrabbade, de professionella och om sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat till personlig involvering, situationella faktorer, olika kunskapsbehov och sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de olika strokeenheterna (IV). Konklusion: Att bli närstående till en person som drabbats av stroke innebär att hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen beredd att ordna livet utifrån de nya förutsättningarna och därför behöver sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå8 ende i de nya och ovana livssituationerna. Att vara närstående under de sex första månaderna efter den drabbades insjuknande innebär att kämpa för frihet, dock utan att överge den drabbade (II). I denna process är det viktigt att den närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv och omsorg om den drabbade och i relation till andra anhöriga. Närstående är kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter varierar stort mellan olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar enbart om den drabbade och berör inte alls de närståendes behov eller situation. Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske hög tid att se över lagen för att undvika att närstående blir "den andra patienten i familjen".

De kan, de vill och de orkar, men… Studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Wallengren Gustafsson, C. (2009)

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för
närstående i deras föränderliga livssituation under de sex första månaderna efter
en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet
att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid
svenska strokeenheter.
Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående
till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående
om vad det innebar att vara närstående till en person drabbad av stroke.
Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data
från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska
hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie
III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå
under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs
metod för kvalitativ innehållsanalys användes för att analysera data. I
delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska
strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs
metod för kvalitativ innehållsanalys.
Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva
kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet
som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att
vara närstående till en person drabbad av stroke innebar en kamp för frihet.
Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser.
De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade
de ohälsan och dess konsekvenser i sina liv (II). Den information som
närstående ville ha handlade om den strokedrabbade, de professionella och om
sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat
till personlig involvering, situationella faktorer, olika kunskapsbehov och
sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll
adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå
när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de
olika strokeenheterna (IV).
Konklusion: Att bli närstående till en person som drabbats av stroke innebär att
hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen
beredd att ordna livet utifrån de nya förutsättningarna och därför behöver
sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå-
8
ende i de nya och ovana livssituationerna. Att vara närstående under de sex första
månaderna efter den drabbades insjuknande innebär att kämpa för frihet,
dock utan att överge den drabbade (II). I denna process är det viktigt att den
närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv
och omsorg om den drabbade och i relation till andra anhöriga. Närstående är
kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och
framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder
och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i
att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial
som erbjuds närstående vid svenska strokeenheter varierar stort mellan
olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum
på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar
enbart om den drabbade och berör inte alls de närståendes behov eller situation.
Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske
hög tid att se över lagen för att undvika att närstående blir "den andra patienten
i familjen".
Sökord: Närstående, stroke, strokeenheter, skriftliga informationsmaterial,
lärande.

Death and suicide among former child and adolescent psychiatric patients

Engqvist, U. and P. A. Rydelius (2006)

BACKGROUND: Increased mortality rates among previous child and adolescent psychiatry (CAP) patients have been found in Scandinavian studies up to the 1980s. The suicide risk in this group has been estimated to be almost five times higher than expected. This article addresses two questions: Do Swedish CAP patients continue to risk premature death and what kind of information related to psychiatric symptoms and/or behavior problems can predict later suicide? METHODS: Hospital files, Sweden's census databases (including immigration and emigration) and administrative databases (including the Swedish Hospital Discharge register and the Persons Convicted of Offences register), and the Cause of Death register were examined to determine the mortality rate in a group of 1,400 former CAP inpatients and outpatients over a period of 12-33 years. Observed and expected numbers of deceased were calculated with the prospective method and the standardized mortality ratio (SMR) method. The relative risk or the risk ratio (RR) is presented with 95% confidence intervals (CIs). Significance level tests were made using two-by-two tables and chi-square tests. The Cox proportional-hazards regression model was used for survival analysis. RESULTS: Twenty-four males and 14 females died. Compared with the general population, the standardized mortality ratio in this group of CAP patients was significantly higher in both sexes. Behavioral problems, school problems, and co-morbid alcohol or drug abuse and criminality (including alcohol-related crimes) were found to be important predictors. Thirty-two deaths were attributed to suicide, intoxication, drug overdose, or accident; one patient died of an alcohol abuse-related disorder, and five patients died of natural causes. Suicide was the most common cause of death, but only 2 of these 19 cases were initially admitted for attempted suicide. CONCLUSION: We suggest that suicide and death prevention among CAP patients may not be a psychiatric issue per se but a future function of society's juvenile social-welfare investments and juvenile-delinquency prevention programs.

Deciding upon Transition to Residential Care for Persons Living with Dementia: why Do Iranian Family Caregivers Living in Sweden Cease Caregiving at Home?

Kiwi M., Hydén LC., Antelius E (2018)

Previous research has shown how filial piety is strong among people of Iranian background and that traditional Iranian culture result in most families' preferring to care for their elderly (and sick) family members at home. While acknowledging this, this article highlights what living in diaspora could mean in terms of cultural adaption and changing family values. By interviewing people with Iranian background living in Sweden (n = 20), whom all have been former primary caregivers to a relative living with dementia, we are able to show how the decision to cease caregiving at home is taken, and what underlying factors form the basis for such decision. Results indicate that although the existence of a Persian profiled dementia care facility is crucial in the making of the decision, it is the feeling of 'sheer exhaustion' that is the main factor for ceasing care at home. And, we argue, the ability to make such a decision based upon 'being too tired' must be understood in relation to transition processes and changes in lifestyle having an affect upon cultural values in relation to filial piety. Because, at the same time the changes on cultural values might not change accordingly among the elderly who are the ones moving into residential care, resulting in them quite often being left out of the actual decision.

Defiant children : a clinician’s manual for parent training

Barkley, R. A. (1987)

This manual is designed to serve several purposes. First, it sets forth detailed instructions on conducting a highly effective, empirically validated program for the clinical training of parents in the management of behavior problem children. Second, it provides a series of parent handouts to be used during the course of the program. These handouts include various rating scales and forms to be completed by the parent, as well as instructions to the parent for use with each step of the program. The handouts are designed to be easy to read and brief. They are not meant to be used without training by a skilled child/family therapist. Finally, the manual outlines methods of assessment that the trainer may wish to employ in the initial evaluation of the child and family or in the periodic evaluation of treatment effects throughout training. The program was designed for children between 2 and 11 years of age. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Delaktighet i tvärinstitutionella flerpartssamtal

Bülow, P. (2012)

Delaktighet och kommunikation är centrala ideal inom vård, omsorg och socialt arbete. Men vad innebär delaktighet i praktiken och hur kan teorier om delaktighet och professionella samtal förstås i olika praktiska sammanhang? Med utgångspunkt i svensk och internationell forskning ger den här boken en djupare inblick i villkor och möjligheter för professionella samtal. I ett tvärvetenskapligt perspektiv på kommunikation presenteras exempel från nya studier på vad delaktighet innebär inom en rad miljöer: nödsamtal, akut- och specialistsjukvård, äldreomsorg, biståndsbedömning, arbetsrelaterad rehabilitering och vårdutbildning.

Boken passar väl för utbildningar till sjuksköterska, socionom, arbetsterapeut, sjukgymnast och läkare. I boken beskrivs även olika metoder för datainsamling och analys av data. Det innebär att boken med fördel kan knytas till metodundervisning och examensarbete på avancerad nivå.

Redaktörerna, Pia Bülow, Daniel Persson Thunqvist & Inger Sandén, och de övriga författarna är knutna till forskarnätverket Kommunikation i vård och omsorg (KIVOS).

Pia Bülow är lektor i socialt arbete vid Avdelningen för beteendevetenskap och socialt arbete på Hälsohögskolan i Jönköping.

Inger Sandén är lektor i vårdvetenskap vid Avdelningen för specialistutbildning vid Högskolan Väst och vid Avdelningen för omvårdnad vid Hälsouniversitetet, Linköpings universitet.

Daniel Persson Thunqvist är lektor i sociologi vid Linköpings universitet.

Delaktighetsmodellen – en väg mot empowerment

Gullacksen, Ann-Christine (2010)

Rapporten beskriver ett utvecklingsarbete inom FoU Skåne som haft som mål att finna former för brukare att framföra synpunkter, önskemål och krav på den verksamhet som de tar del av. Utgångspunkten har varit Empowerment - ett begrepp som här huvudsakligen använts för att belysa brukarnas möjlighet att bestämma över sina liv och erövra egenmakt - ett exempel på en botten-uppstrategi för inflytande.

Metoden som benämnts Delaktighetsmodellen har inspirerats av andra former för brukarinflytande som BIKVA och Lyttemöten från Danmark och BUKU från Sverige.

Rapportens första del är en beskrivning av processen och den implementering som skett i Skåne under tre år. Den andra delen kan ses som en fördjupning av motiven och en beskrivning av de bakomliggande teoretiska begreppen.

Deliberate self-harm behaviour in Swedish adolescent girls reports from public assessment and treatment agencies

Holmqvist R, Carlberg M, Hellgren L. (2008)

Self-harming behaviour among adolescents, and particularly adolescent girls, has evoked much public attention. This article presents a Swedish study about what information assessment and treatment agencies have about self-harming behaviour in the form of cutting and burning in adolescent girls. The study was made on assignment by the Swedish National Board of Health and Welfare. All public agencies assessing or treating adolescents with psychological problems in three Swedish cities were asked to deliver information about self-harming behaviour in the form of self-cutting or self-burning in girls between 13 and 18 years of age. In addition, the young offender institutions within the National Board of Institutional Care treating teenager girls were asked to deliver information about self-harming behaviour in their clients. We found that about 1% of the total population of girls in these ages were known to have cut or burnt themselves and about one third of the girls in the institutions. Attempts to distinguish subgroups among the girls were only partly successful. Although some subgroups could be identified, the overlap between them was large. The conclusion was that this behaviour may be seen as an expression of a wide variety of problems in a heterogeneous group of young persons. © 2007 Springer Science+Business Media, LLC.

Deliberate self-harm in Oxford 1990-2000; a time of change in patient characteristics

Hawton K, Harriss L, S. H, Simkin S, Bale E, A. B. (2003)

BACKGROUND:
Trends in deliberate self-harm (DSH) are important because they have implications for hospital services, may indicate levels of psychopathology in the community and future trends in suicide, and can assist in identification of means of suicide prevention.
METHOD:
We have investigated trends in DSH and characteristics of DSH patients between 1990 and 2000 based on data collected through the Oxford Monitoring System for Attempted Suicide.
RESULTS:
During the 11-year study period 8590 individuals presented following 13858 DSH episodes. The annual numbers of persons and episodes increased overall by 36.3% and 63.1% respectively. Rates (Oxford City) declined, however, in the final 3 years. There were gender- and age-specific changes, with a rise in DSH rates in males aged > or = 55 years and in females overall and those aged 15-24 years and 35-54 years. Repetition of DSH increased markedly during the study period. Antidepressant overdoses, especially of SSRIs, increased substantially. Paracetamol overdoses declined towards the end of the study period. Alcohol abuse, use of alcohol in association with DSH, and violence increased, especially in females, and the proportion of patients in current psychiatric care and misusing drugs also rose.
CONCLUSIONS:
While overall rates of DSH did not increase markedly between 1990 and 2000, substantial changes in the characteristics of the DSH population and a rise in repetition suggest that the challenges facing clinical services in the management of DSH patients have grown.

Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers

Holm M, Carlander I, Fürst CJ, Wengström Y, Årestedt K, Öhlen J, Henriksson A (2015)

BACKGROUND: Family caregivers in palliative care have a need for knowledge and
support from health professionals, resulting in the need for educational and
supportive interventions. However, research has mainly focused on the experiences
of family caregivers taking part in interventions. To gain an increased
understanding of complex interventions, it is necessary to integrate the
perspectives of health professionals and family caregivers. Hence, the aim of
this study is to explore the perspectives of health professionals and family
caregivers of delivering and participating in a psycho-educational intervention
in palliative home care.
METHODS: A psycho-educational intervention was designed for family caregivers
based on a theoretical framework describing family caregiver's need for knowing,
being and doing. The intervention was delivered over three sessions, each of
which included a presentation by healthcare professionals from an intervention
manual. An interpretive descriptive design was chosen and data were collected
through focus group discussions with health professionals and individual
interviews with family caregivers. Data were analysed using framework analysis.
RESULTS: From the perspectives of both health professionals and family
caregivers, the delivering and participating in the intervention was a positive
experience. Although the content was not always adjusted to the family
caregivers' individual situation, it was perceived as valuable. Consistently, the
intervention was regarded as something that could make family caregivers better
prepared for caregiving. Health professionals found that the work with the
intervention demanded time and engagement from them and that the manual needed to
be adjusted to suit group characteristics, but the experience of delivering the
intervention was still something that gave them satisfaction and contributed to
them finding insights into their work.
CONCLUSIONS: The theoretical framework used in this study seems appropriate to
use for the design of interventions to support family caregivers. In the
perspectives of health professionals and family caregivers, the
psycho-educational intervention had important benefits and there was congruence
between the two groups in that it provided reward and support. In order for
health professionals to carry out psycho-educational interventions, they may be
in need of support and supervision as well as securing appropriate time and
resources in their everyday work.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson