Bibliotek

Syftet med denna rapport är att belysa hur barn med cerebral pares mellan
tio och sjutton år upplever sina möjligheter att påverka stödinsatser och
behandlingsmetoder som de erhåller från olika institutioner samt att öka
kunskaperna om deras unika situation. Det innebär att intresset fokuserar på
barnens upplevelser och erfarenheter av habilitering, skola och fritid. Dessa
barns vardag skiljer sig i många avseenden från andra barns vardag.
Metoden som använts är intervjuer med barnen men jag har även talat med
föräldrarna. Med hjälp av barnhabiliteringen vid Kärnsjukhuset i Skövde,
Handikappförvaltningen i Järfälla kommun samt Mullback Institutet i
Karlsborg, har jag fått kontakt med familjerna. De har tillfrågat familjerna
om intresse att delta. De flesta intervjuer har genomförts i barnens hem, en
på ett fritidshem samt två på Mullback Institutet.
Resultatet visade att barnen är relativt nöjda och tycker det mesta fungerar
bra. Det som ibland är problem är kamratkontakterna i skolan och på
fritiden. Många barn känner sig ensamma och isolerade. Föräldrarna anser
att deras barn är i behov av mer träning via habiliteringen och betonar att
kamratkontakterna är ett större problem än vad barnen ibland vill erkänna.

Vägledningen ger läsaren en historisk tillbakablick för att förstå nutiden och en presentation av viktiga aspekter som gäller de personer som är mottagare av boende- och boendestödsinsatser. Här beskrivs utvecklingen av boende- och boendestödsverksamheterna sedan psykiatrireformen. Det ges också en definition av vad ett hem är, hemmets betydelse för personen och den etiska plattformen som dessa verksamheter ska bygga på. Sedan behandlas målgruppen med fokus på heterogenitet och de skillnader som beror på ålder och diagnos. Dessutom presenteras målgruppens behov av stöd och service samt önskemål om var och hur man vill bo.

Kommunens mål- och planeringsarbete
Nästa del tar upp kommunens mål- och planeringsarbete för boendeverksamheter på ett övergripande plan och vänder sig steg främst till personer som arbetar med kommunal verksamhetsledning och enhetschefer. Här fokuseras innehållet på lagstiftning, tillsynsresultat samt villkor och redskap för verksamheten. Texten innehåller förslag på åtgärder som kan underlätta kommunernas arbete.

Rapporten ger också viktig bakgrundsinformation till främst enhetschefer och boendestödjare om hur man kan tänka kring bostäder. Här diskuteras aspekter som fullvärdig bostad, institutionell prägel, fysisk och psykosocial miljö samt vad som kännetecknar en god boendemiljö.

Utredningsmomentet och standardiserade bedömningsinstrument
Vägledningen innehålle också information om ansökan, biståndsbedömning och beslut när någon ansöker om insatser, information som främst vänder sig till biståndsbedömare och boendestödjare. Socialstyrelsen har tidigare publicerat en handbok om handläggning och dokumentation, här fokuseras på utredningsmomentet och användningen av standardiserade bedömningsinstrument. Dessutom betonas att behovsbedömningar är en kontinuerlig process eftersom en individs behov förändras.

Typer av boendestöd och hur arbetet kan utföras
Informationen om viktiga typer av stöd som förekommer i boendeverksamheter – psykosocialt boendestöd, stöd för att förebygga fysisk ohälsa och förbättra fysisk hälsa samt kognitiva hjälpmedel för personer med psykisk funktionsnedsättning vänder sig främst till boendestödjare. Först behandlas boendestöd som funktion, vem som arbetar med stödet samt vad man kan tänka på när man arbeta i någon annans hem. Kärnan är ny forskning som består av intervjuer med boende om hur de vill att boendestödet ska ges.

I kapitel 9 ges exempel på kognitiva funktionsnedsättningar som komplicerar vardagslivet, en del kognitiva hjälpmedel samt vad man kan tänka på när de ska användas.

Boendestöd utifrån ett folkhälsoperspektiv
Målgruppens fysiska hälsa har visat sig vara ett mycket eftersatt område och i sjunde kapitlet presenteras forskning som jämför målgruppen med befolkningen i övrigt. Texten har ett folkhälsoperspektiv och kan stimulera till insatser i ett boendesammanhang för att förebygga fysisk ohälsa och förbättra gruppens fysiska hälsa. Hälso- och sjukvård i permanenta boenden

Den del av rapporten som tar upp ansvarsfrågor när det gäller hälso- och sjukvården i olika permanenta boenden vänder sig främst till ledningsnivån, enhetschefer och medicinskt ansvariga.

BACKGROUND AND PURPOSE: We examined longitudinal changes of quality of life (QOL) covering physical and mental factors in an unselected group of stroke patients and their informal caregivers. Our hypothesis was that informal caregivers would have better QOL than patients at both follow-ups, and that changes, if any, would be related to the patients' status. METHODS: QOL of 304 consecutive stroke patients and their 234 informal caregivers from the population-based Lund Stroke Register was assessed 4 months after stroke onset with the Short Form 36 (SF-36) questionnaire. SF-36 was repeated for both groups after 16 months together with Mini Mental State Examination (MMSE) and Geriatric Depression Scale (GDS-20) for patients. RESULTS: The patients' mean QOL scores improved between 4 and 16 months after stroke in the socio-emotional and mental SF-36 domains and decreased in the domain physical function. Multivariate analyses showed that the patients' most important determinants of QOL after 16 months were GDS-20 score, functional status, age, and gender. Informal caregivers had better QOL than patients except for the domain role emotional and the mental component summary. The caregivers' most important determinants of QOL were their own age and the patients' functional status. CONCLUSIONS: Our study highlights depressive symptoms in determining QOL of stroke patients. Despite self-perceived deterioration in physical function over time, several other components of QOL improved, suggesting internal adaptation to changes in their life situations. Informal caregivers of stroke patients may be under considerable strain as suggested by their lower emotional-mental scores.

In the support of individuals with profound intellectual and multiple disabilities (PIMD), assessing the level of alertness is a recurring issue for parents and other direct support persons. Although observations show clear advantages above and beyond other assessment methods, there are problems related to this method as well. Subjectivity of interpretation and low reliability results have been described as the main problems. In the present study, our aim was to estimate the reliability of the Alertness Observation List (AOL) while, at the same time, minimizing the problems entailed in observations. We calculated both the inter-observer agreement and intra-observer agreement for 39 situations. Since the results exceeded the formulated 80%-criterion, we concluded that the AOL was a reliable instrument. However, the large range found in the results was striking. Moreover, observers with different information about the observed individuals came up with different reliability scores. To determine the value of observation of individuals with PIMD, it might well be necessary to judge the actual usefulness that the instrument has in clinical practice, besides the reliability of the results.

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers' capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

Abstract
Purpose: Drawing on the perspectives of stroke survivors, family members and domestic helpers, this study explores participants' experiences of self-perceived fall risk factors after stroke, common fall prevention strategies used, and challenges to community participation after a fall.

Methods: Semi-structured interviews were conducted in Singapore with community-dwelling stroke survivors with a previous fall (n = 9), family caregivers (n = 4), and domestic helpers (n = 4) who have cared for a stroke survivor with a previous fall. Purposive sampling was used for recruitment; all interviews were audio-recorded with permission and transcribed. Thematic analysis was conducted using NVivo (v10) software.

Results: All participants shared their self-perceived intrinsic and extrinsic fall risk factors and main challenges after a fall. For stroke participants and family caregivers, motivational factors in developing safety strategies after a previous fall(s) include social connectedness, independent living and community participation. For family caregivers and domestic helpers, the stroke survivor's safety is their top priority, however this can also lead to over-protective behavior outside of the rehabilitation process.

Conclusions: Reducing the risk of falls in community-dwelling stroke survivors seems to be more important than promoting community participation among caregivers. The study findings highlight that a structured and client-centered fall prevention program targeting stroke survivors and caregivers is needed in Singapore. Implications for rehabilitation Falls after stroke can lead to functional decline in gait and mobility and restricted self-care activities. Community-dwelling stroke survivors develop adaptive safety strategies after a fall and want to be socially connected. However, caregivers see the safety of the stroke survivors as their top priority and demonstrate over-protective behaviors. Fall prevention programs for community-dwelling stroke survivors should target both stroke survivors and their caregivers. A structured and client-centered fall prevention program targeting at multiple risk factors post-stroke is needed for community-living stroke survivors.

Family caregivers of people with bipolar disorder experience a range of difficulties in understanding and coping with the impact of the disorder. The Family Support Team at the Princess Alexandra Hospital in Brisbane, Queensland, developed an educational supportive program for families of people with bipolar disorder that sought to improve caregiver knowledge of the illness, reduce caregiver distress, and enhance caregiver coping. The program also sought to moderate caregiver attributions of patient behavior in order to build an illness perspective of behavior. The bipolar program was developed, trialed, and evaluated. Analysis of results shows encouraging improvements for some families in knowledge, distress, attributions, and ways of coping. Practice and research implications include identifying differences with the schizophrenia program, the importance of a problem-solving focus, maintaining a balance between information giving and support, and timing of the intervention.

Complex interventions are widely used in the health service, in public health practice, and in areas of social policy that have important health consequences, such as education, transport, and housing. They present various problems for evaluators, in addition to the practical and methodological difficulties that any successful evaluation must overcome. In 2000, the Medical Research Council (MRC) published a framework1 to help researchers and research funders to recognise and adopt appropriate methods. The framework has been highly influential, and the accompanying BMJ paper is widely cited.2 However, much valuable experience has since accumulated of both conventional and more innovative methods. This has now been incorporated in comprehensively revised and updated guidance recently released by the MRC (www.mrc.ac.uk/complexinterventionsguidance). In this article we summarise the issues that prompted the revision and the key messages of the new guidance.

The aim of key working is to ensure the provision of holistic care and support to meet the individual requirements and aspirations of the child, young person and their family. The governement-funded Early Support programme, which ran until 2015, provided a range of key working training and resources includoing these guide's on delivering key working in practice.

The guide summarises key evidence and consistent elements of a key working approach, including an analysis of the implications of key working that cuts across health, social care and education.

This report presents the current status of a series of studies oriented toward the assessment of perceived life quality. The conceptual model proposes that a person's overall sense of life quality is understandable as a combination of affective responses to life 'domains', which are of two types-role situations and values. Over 100 items used to measure a wide variety of domains and 28 items assessing perceived overall life quality are presented. Various subsets of these items were used in interviews with several representative samples of American adults. Based on these data the domain items were grouped into a smaller number of semi-independent clusters which were internally stable across 10 different subgroups of the respondents and whose interrelationships were highly replicable in independent national samples. A series of analyses, some replicated in more than one survey showed: (1) an additive combination of 12 selected domains explained 50–60% of the variance in an index of overall life quality, (2) neither other domains nor several social characteristic variables contributed additional explanatory power, (3) this level of explanation was achieved in each of 22 subgroups of the population, and (4) additive combinations of domains worked as well as more complicated combinations.

BACKGROUND:
A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home.
AIMS:
To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals.
RESULTS:
Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents.
CONCLUSIONS:
Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.

Research shows that family members of people with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question of whether the family members' experience of not being involved can be conceptualized in terms of alienation towards mental health services from their encounter with psychiatric care. In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by the parents of people with mental illness. The reliability of the questionnaire was evaluated by a test-retest design with a group of 15 family members. The data were analyzed by a non-parametric statistical method. The results of the validity and reliability evaluations showed that of the 46 original items in the questionnaire, 28 would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modifications could make the FIAQ useful in exploring these concepts in other settings.

Avhandling

Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.

Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.

Abstract:
Objectives Measuring patients satisfaction is an important part of continuous quality improvement in health care. In intensive care, family satisfaction is often used as a proxy for patient experience. At present, no suitable instrument to measure this has been fully validated in Sweden. The purpose of this study was to develop and validate a questionnaire intended to evaluate families' satisfaction of quality of care in Swedish intensive care units. Methods Based on literature and the modification of pertinent items in two existing North American questionnaires, a Swedish questionnaire was developed. Content validity was assessed by experts, and the cognitive method Think Aloud was used with twelve family members of intensive care patients in two different intensive care units. Data was analysed using qualitative content analysis. Findings Seven items in the questionnaire were identified as problematic, causing eight problems concerning questioning of content and 23 concerning misunderstanding. Six of these items were changed in order to be understood the way they were intended, and one item was removed. Conclusion A family satisfaction questionnaire applicable in Swedish intensive care units has been developed and validated for respondents' understanding of the questions being asked. However, further psychometric testing should be performed when more data are available.

Acknowledgments
This research was supported by Grants P01 HD018955 and R01 DC007684 from the National Institutes of Health. We wish to thank Kris Mathews, Megan Burgardt, and the individuals who participated in this research and their families.
PurposeAccurate description of an individual's communication status is critical in both research and practice. Describing the communication status of individuals with severe intellectual and developmental disabilities is difficult because these individuals often communicate with presymbolic means that may not be readily recognized. Our goal was to design a communication scale and summary score for interpretation that could be applied across populations of children and adults with limited (often presymbolic) communication forms.

MethodThe Communication Complexity Scale (CCS) was developed by a team of researchers and tested with 178 participants with varying levels of presymbolic and early symbolic communication skills. Correlations between standardized and informant measures were completed, and expert opinions were obtained regarding the CCS.

ResultsCCS scores were within expected ranges for the populations studied, and interrater reliability was high. Comparison across other measures indicated significant correlations with standardized tests of language. Scores on informant report measures tended to place children at higher levels of communication. Expert opinions generally favored the development of the CCS.

ConclusionsThe scale appears to be useful for describing a given individual's level of presymbolic or early symbolic communication. Further research is needed to determine whether it is sensitive to developmental growth in communication.

Purpose: The purpose of this paper is to describe the conceptual foundation of a new parent-report measure of the participation and environment of children and youth: the Participation and Environment Measure − Children and Youth version (PEM-CY). Methods: The ICF-CY provided an initial conceptual framework. Results from a qualitative study to obtain parent perspectives and in-depth review of the literature were used to identify relevant dimensions, items and rating scales for measurement. Results: Life situations, defined as sets of activity categories, were identified for three settings: home, school and community. Participation was operationalized as a multidimensional construct with three measurement dimensions: frequency, extent of involvement and desire for change. Parallel sets of items examining environmental factors that are perceived to help or facilitate participation were defined in relation to the typical activities of each setting. Conclusions: The PEM-CY provides a new measure of participation and environment that reflects the perspectives of parents of children and youth. The instrument will facilitate research and professional practice to understand and support the participation of children and youth with and without disabilities.
Implications for Rehabilitation
As defined by the International Classification of Functioning, Disability, and Health (ICF), participation and environment are multidimensional constructs that have been challenging to measure.
A new parent-report survey measure has been developed that is feasible for use in large-scale studies of children and youth with and without disabilities.
The instrument examines participation and environment of children and youth aged 5 to 17 years across three major settings: home, school and community.

Intimate Partner Violence (IPV) is a prevalent social problem in the United States and women of childbearing age are the most likely victims. The young children born to these women are impacted, however, women are not routinely asked about IPV even when there is evidence that their child has been abused. To highlight the importance of routinely screening for IPV in child welfare and other social service agencies this article reviews typical social-emotional development and physiological/neurological development in early childhood and the impact that IPV and trauma have on these domains of development. Early intervention with young children and caregivers living with IPV provides a significant buffer to the negative effects that witnessing IPV have on children's development and their relationships with caregivers.

examine epidemiology in this chapter from several perspectives: demographic, transitional, community, developmental, and lastly, experimental / we use data from epidemiological studies in Woodlawn, beginning in the 1960s and still continuing, to illustrate these perspectives, showing demographic aspects of this urban poor, Black, neighborhood, the mobility or transition of the families over the period of 1966 to 1976, antecedents along developmental paths to aggression and depression from 1st grade through midadolescence / examine epidemiologically within Woodlawn variations in school and classroom environments and in family structure at the time of 1st grade, as well as family evolution through the child rearing style
epidemiological examination of aggression and depression, these being special cases of the more general problem of measuring psychopathology (PsycINFO Database Record (c) 2016 APA, all rights reserved)

examine epidemiology in this chapter from several perspectives: demographic, transitional, community, developmental, and lastly, experimental / we use data from epidemiological studies in Woodlawn, beginning in the 1960s and still continuing, to illustrate these perspectives, showing demographic aspects of this urban poor, Black, neighborhood, the mobility or transition of the families over the period of 1966 to 1976, antecedents along developmental paths to aggression and depression from 1st grade through midadolescence / examine epidemiologically within Woodlawn variations in school and classroom environments and in family structure at the time of 1st grade, as well as family evolution through the child rearing style epidemiological examination of aggression and depression, these being special cases of the more general problem of measuring psychopathology (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Efforts to understand the etiology of adult mental disorders by studying children has produced unanticipated changes in our understanding of pathology, individual development, and the role of social context. Among these are the blurring of the division between mental illness and mental health, the need to attend to patterns of adaptation rather than personality traits, and the powerful influences of the social world on individual development. Current developmental views place deviancy in the dynamic relation between individuals and their contexts. At another level, when we view the history of developmental psychopathology, dialectical developmental processes are evident as we trace how patterns of adaptation of researchers, expressed in theoretical models and empirical paradigms. increasingly have come to match the complexities of human mental health and illness.

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.

Metod och målgrupp
Borderline personlighetsstörning kännetecknas av ett genomgående mönster av instabilitet i regleringen av känslor, bristande impulskontroll, relationsproblem och låg självkänsla. I kliniska sammanhang yttrar sig störningen i svårigheter att hantera känslor, impulsiva handlingar och aggressivitet, upprepade tillfällen med självskadande beteenden och självmordsförsök. Patienter med borderline personlighetsstörning har ofta även andra personlighetsstörningar eller sjukdomar, t ex depression, ätstörning, drogmissbruk och ångestsjukdomar. DBT är en omfattande och avancerad form av kognitiv beteendeterapi (KBT) som specifikt utvecklats för kroniskt självmordsbenägna patienter med borderline personlighetsstörning. Metoden har flera inslag, bl a beteendeförändrande tekniker och metoder för att lära sig acceptera känslor. Behandlingen genomförs i flera steg, där självskadande och terapistörande beteenden prioriteras när behandlingen inleds. Ett utmärkande drag för DBT är den omfattande kontakt som behandlingsteamet har med patienten i form av individualterapi, gruppterapi och telefonstöd. Utöver detta ingår handledning och stöd till personal som arbetar med patientgruppen. Det har beräknats att i Sverige har mellan 70 000 och 140 000 personer diagnosen borderline personlighetsstörning. Hur många av dessa som skulle kunna bli aktuella för behandling med DBT är inte klarlagt.

Frågeställning
Kan behandling med DBT ge en minskning av självskadebeteende och drogmissbruk hos personer med borderline personlighetsstörning?

Patientnytta
I sex randomiserade kontrollerade studier har DBT prövats mot annan psykiatrisk behandling. En stor andel kvinnor har ingått i dessa. Behandlingens längd har oftast varit ett år och resultaten varierar mellan studierna, vilket delvis beror på att olika undergrupper har studerats. Resultaten har visat att DBT leder till minskat självskadebeteende och även till färre behandlingsavbrott. Effekten har visat sig kvarstå vid uppföljning upp till två år. Behandlingen medför eventuellt också minskat behov av sjukhusvård, och hos missbrukare minskad droganvändning. Det finns inga bevis för att resultaten av behandlingen skulle påverkas av om patienten även har en missbruksdiagnos. Det finns inga säkra resultat vad gäller de olika behandlingskomponenternas betydelse för utfallet.

Ekonomiska aspekter
Kostnaden för DBT har undersökts i en svensk studie. Den totala årliga vårdkostnaden per patient sjönk från 320 000 kronor året innan behandlingen startade till 210 000 kronor då behandlingen gavs. Det finns ett behov av hälsoekonomiska studier där metodens kostnadseffektivitet undersöks.

SBU:s bedömning av kunskapsläget
Det finns begränsat vetenskapligt stöd för att DBT leder till minskat självskadebeteende och att effekten kvarstår vid uppföljning upp till två år (Evidensstyrka 3)*. Eventuellt medför behandlingen också minskat behov av sjukhusvård samt hos missbrukare minskad droganvändning. DBT förefaller således vara en lovande behandlingsform för patienter med borderline personlighetsstörning. Den behöver dock utprövas för svenska förhållanden och det är angeläget att studier avseende metodens kostnadseffektivitet genomförs.

* Detta är en gradering av styrkan i det vetenskapliga underlag som en slutsats grundas på. Graderingen görs i tre nivåer;
Evidensstyrka 1 = starkt vetenskapligt underlag,
Evidensstyrka 2 = måttligt starkt vetenskapligt underlag,
Evidensstyrka 3 = begränsat vetenskapligt underlag.

Detta är SBU:s sammanfattning och bedömning av kunskapsläget. Den bygger på en rapport som är framtagen av SBU i samarbete med Gerhard Andersson (sakkunnig), professor, psykolog, Institutionen för beteendevetenskap, Linköpings universitet, Margda Wærn (granskare), docent, överläkare, Institutionen för klinisk neurovetenskap, Sahlgrenska akademin vid Göteborgs universitet och Lars-Göran Öst (granskare), professor, psykolog, Psykologiska institutionen, Stockholms universitet.

This paper examines the rationale for service user and carer involvement in professional education and reflects on an initiative in which social work and nursing students undertook a sequence of joint learning in relation to mental health theory and practice. Central to this initiative was the promotion of opportunities for dialogue, both between students from different professional disciplines and between students, service users and carers. To enable this, much of the learning took place in small groups facilitated by either a service user or a carer. Evaluation of this initiative indicated that, for the majority of social work and nursing students, learning from this shared experience had a major impact on their professional development. However, a small but significant minority found it hard to enter into a dialogue with others on a basis of equality and a sharing of their human as well as their professional experience. Some students indicated that they would have preferred a focus on acquiring more specialist professional knowledge and skills. This raises important issues in relation to the changing expectations of professionalism and professional education-and what really makes someone 'fit for practice'.

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.

OBJECTIVE:
This article discusses the use of a third qualifier, subjective experience of involvement, as a supplement to the qualifiers of capacity and performance, to anchor activity and participation as separate endpoints on a continuum of actions.
DESIGN:
Empirical data from correlational studies were used for secondary analyses. The analyses were focused on the conceptual roots of the participation construct as indicated by the focus of policy documents, the support for a third qualifier as indicated by correlational data, differences between self-ratings and ratings by others in measuring subjective experience of involvement, and the empirical support for a split between activity and participation in different domains of the activity and participation component.
RESULTS:
Participation seems to have two conceptual roots, one sociologic and one psychologic. The correlational pattern between the qualifiers of capacity, performance, and subjective experience of involvement indicates a possible split between activity and participation. Self-ratings of participation provide information not obtained through ratings by others, and later domains in the activities and participation component fit better with measures of experienced involvement than earlier domains did.
CONCLUSIONS:
The results from secondary analyses provide preliminary support for the use of a third qualifier measuring subjective experience of involvement to facilitate the split between activity and participation in the International Classification of Functioning, Disability and Health, Children and Youth version, activity and participation domain.

Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors.

For rehabilitation and disability research, participation and environment are 2 crucial constructs that have been placed center stage by the International Classification of Functioning, Disability and Health (ICF). However, neither construct is adequately conceptualized by the ICF, and both are difficult to measure. This article addresses conceptual and methodologic issues related to these ICF constructs, and recommends an improved distinction between activities and participation, as well as elaboration of environment. A division of the combined ICF categories for activity and participation into 2 separate taxonomies is proposed to guide future research. The issue of measuring participation from objective and subjective perspectives is examined, and maintaining these distinct conceptual domains in the measurement of participation is recommended. The methodological issues contributing to the difficulty of measuring participation are discussed, including potential dimensionality, alternative metrics, and the appropriateness of various measurement models. For environment, the need for theory to focus research on those aspects of the environment that interact with individuals' impairments and functional limitations in affecting activities and participation is discussed, along with potential measurement models for those aspects. The limitations resulting from reliance on research participants as reporters on their own environment are set forth. Addressing these conceptual and methodological issues is required before the measurement of participation and environmental factors can advance and these important constructs can be used more effectively in rehabilitation and disability observational research and trials.

The discussion of a palliative care and a dignified death has almost exclusively been applied to people dying of cancer. As people are getting older and are living longer, nursing homes have become an important place for end-of-life care and death. Dignity is a concept often used in health care documents but their meaning is rarely clarified.The main aim of this thesis was to gain a deeper understanding of what dignity meant to older people in end of life care as well as to nursing home staff. The thesis comprises four studies. The first and second study involved older people living in nursing home settings studied from a hermeneutic perspective. In the first study twelve older people in two nursing homes were interviewed two to four times over a period of 18–24 months during 2002–2003. Altogether, 39 interviews were analyzed by a hermeneutic method. Dignity was closely linked to self-image and identity. The themes of unrecognizable body, dependence and fragility constituted threats to dignity. The third theme, inner strength and sense of coherence, seemed to assist the older people in maintaining dignity of identity. In the second study the aim was to acquire a deeper understanding of how three older women from study I, created meaning in everyday life at the nursing home. A secondary analysis was carried out and showed meaning in everyday life was created by an inner dialogue, communication and relationships with others. The third study was to explore nursing home staff members' experience of what dignity in end-of –life care means to older people and to themselves.Totally 21 interviews with staff were carried out and analyzed through a qualitative content analysis. The meaning of older people's dignity was conceptualized as feeling trust, which implied being shown respect. Staff members' dignity was conceptualized as maintaining self-respect. Dignity was threatened in situations where staff experienced themselves and the older people as being ignored and thereby marginalized. The fourth study was carried out through focus groups discussions with 20 staff members about seven older peoples dying death and care. The analyses showed that conversations and discussions about death were rare. Death was surrounded by silence. It was disclosed that the older dying person's thoughts and attitudes of death were not explicitly known. A dignified death meant alleviation of bodily suffering and pain and meaningfulness. The staff's ethical reasoning mainly concerned their experience of a gap between their personal ideals of what a dignified end of life should include and what they were able to provide in reality, which could result in conscious stress. Staff members need training and support. End of life care demands competence and teamwork.A challenge for future care of older people would be to develop a nursing home environment in which human dignity is promoted.

Using longitudinal register data on all persons born in Sweden 1973–1978, we report on prevalence of disability pension among young adults who were child welfare clients during their formative years, and explore risk factors for this long-term outcome. For most child welfare subgroups, prevalence approached or exceeded ten percent. Multivariate logistic regression analyses found high crude odds ratios of disability pension among child welfare alumni. These were substantially reduced – but not obliterated – after adjustments for a host of background factors. Decomposition analyses revealed that child welfare alumni's poor school performance and low educational attainment accounted for most of the confounding effects. We also found that child welfare clients with a disability pension had far higher rates of psychosocial problems in their adult lives than other peers with a disability pension.

Child welfare alumni should be regarded as a high risk group for future disability pension and for permanent exclusion from the labor market. Rates of suicidal behavior in adult age were extreme among some subgroups of child welfare alumni with a disability pension, which should be communicated to agencies who are likely to meet these groups (eg. primary health care).

This powerful book presents a series of perspectives on the process of self-organisation of disabled people which has taken place over the last thirty years. The 1980s saw a transformation in our understanding of the nature of disability, and consequently the kinds of policies and services necessary to ensure the full economic and social integration of disabled people. At the heart of this transformation has been the rise in the number of organisations controlled and run by disabled people themselves. Through a series of interviews with disabled people who have been centrally involved in the rise of the disability movement, the authors present a new collective history which throws light on the politics of the 1980s, and offers insights into future political developments in the 1990s and on into the twenty-first century.

Data from 99 school-aged Bosnian refugee children living in Sweden were analyzed to reveal the patterns of war stress experienced and the relation between these stressors and current psychological problems. A significant pattern of associations emerged. When children had experienced much stress, talking about their experiences seemed to exacerbate their negative effects.

Retrospective and prospective investigations of children to alcoholic women gave an incidence of fetal alcohol lesion of one per 300 deliveries of whom half had the complete fetal alcohol syndrome. Perinatal and infant mortalities were increased seven to tenfold and low birth weight (less than or equal to 2 500 g), preterm deliveries (less than 37 weeks) and smallness for gestational age (less than -2 S.D.) were increased eightfold, threefold and twelvefold, respectively. Small size at birth correlated with reduced mental performance later in life, 58% had IQ below 85 and 19% below 70.8% had cerebral palsy. The incidence of cerebral palsy associated with maternal inebriety was 1/5 000 deliveries, i.e. every sixth case of cerebral palsy. Tracing of alcoholic women during pregnancy and treatment gave favourable effect on intrauterine growth when sobriety could be induced early in pregnancy but could not protect from functional brain disturbance measured by neurological performance and be evoked response electroencephalography. Damage to the fetus by alcohol is now the largest known health hazard by a noxious agent that is preventable.

Teori och behandling av flyktingbarn med svår psykisk ohälsa
Flyktingbarn som söker en fristad i vårt land påverkas ofta av egna svåra upplevelser av krig, våld och övergrepp. Många utvecklar allvarliga tecken till psykisk ohälsa. En del barn utvecklar ett apatiskt uppgivenhetssyndrom. När de så kallade apatiska flyktingbarnen dök upp i början av 2000-talet var bristen på kunskap stor. Inte sällan ledde det till att barnen inte fick hjälp eller att insatserna försämrade barnens tillstånd. I dag har både forskning och erfarenheterna av förebyggande insatser och behandling gjort stora framsteg.

Denna bok är den första i sitt slag om teori och behandling av barn med svåra uppgivenhetssyndrom, kunskaper som rör alla traumatiserade flyktingbarn som, om de inte behandlas på rätt sätt, riskerar att utveckla uppgivenhetssyndrom. Bokens författare är forskare, läkare, psykologer, sjukgymnaster, jurister, psykoterapeuter, sjuksköterskor, socionomer och socialpedagoger. Boken tar bland annat upp:

Effekter av långvarig stress på föräldra-barnrelationen
Biologiska och psykologiska effekter av trauma och uppgivenhetssyndrom
Beskrivningar av olika behandlingsmodeller
Nutritionsbehandling vid uppgivenhetssyndrom
Förebyggande insatser
Historiska erfarenheter av uppgivenhetssyndrom
Mänskliga rättigheter och etik
Asylprocessen och juridik
Hur påverkas behandlaren?
Boken riktar sig till alla som möter flyktingbarn med svår psykisk ohälsa eller uppgivenhetssyndrom: läkare, sjuksköterskor, studenter och andra inom vård, socialtjänst, skola, förskola, kommuner och andra myndigheter men också alla viktiga personer som finns runt barnen och deras familjer i sociala nätverk och frivilligorganisationer.

Under sommaren 2009 kom en ändring i socialtjänstlagen angående anhörigstöd.
Förändringen gick från att kommuner bör ge stöd till att man ska ge stöd till
anhöriga. Till följd av detta beslutade sig Kristinehamn och Säffle kommun för att
utvärdera kommunernas befintliga stöd och dessutom undersöka vilket behov som
finns hos anhöriga. FoU Välfärd Värmland fick uppdraget att konstruera en enkät
och därefter genomföra undersökningen i Kristinehamn och Säffle kommun.
För uppbyggnaden av enkäten genomfördes sju stycken djupintervjuer med
anhöriga från båda kommunerna. De analyserades enligt en Grounded theory
ansats. Det framkom tre kategorier av behov och de var information, kunskap samt
egen tid. Det framkom även viktiga faktorer för rollen som anhörig som inte direkt
kan härledas till behov men som inte kunde uteslutas i undersökningen. Andra
betydelsefulla fynd som framkom i intervjuerna var att fokus gärna var på den
närstående och dennes välbefinnande och det var som anhörig svårt att se sina egna
behov. Så trots att undersökningens fokus var på anhörigas behov gick det således
inte att utesluta att rollen som anhörig präglas av den närståendes välbefinnande
och hur dennes situation såg ut. En annan faktor som framkom var att
anhörigsituationen kan ses som en process med olika skeden. Anhöriga visade sig ha
olika behov under olika faser. Det fanns även behov och faktorer som var mer eller
mindre relevanta beroende på vilken funktionsnedsättning den närstående hade.
Utifrån vad analysen av intervjuerna genererade konstruerades därefter enkäten.
Totalt deltog 286 anhöriga i enkätundersökningen i Säffle kommun. Av de som
besvarade enkäten utgjorde män 38,6% och kvinnor 61,4% och medelåldern var 63,7
år. I Kristinehamns kommun deltog 308 anhöriga varav 36,0% var män och 64,0%
var kvinnor. Medelåldern bland dessa anhöriga var 62,6 år.
Resultatet visade att det var samma fem behov som var viktigast för anhöriga i båda
kommunerna. De hade behov av information om; hjälpmedel, trygghetslarm, vilka
insatser som finns tillgängliga till den närstående och vilka krav den närstående kan
ställa samt behov av färdtjänst. Resultatet visade också att de 13 främsta faktorerna
som anhöriga tycker var viktiga var samma i båda kommunerna. Det tyder på att det
är faktorer som anhöriga värderar som viktigt oberoende av hemkommun. Det
anhöriga värderade främst var professionalitet, bemötande och kontinuitet bland
personal som stöder deras närstående. De tyckte också att miljön på boendet var
viktigt samt att boendet var rätt utrustat och anpassat. Information av olika slag var
det som anhöriga var i behov av mest i båda kommunerna. Det var få anhöriga i
Säffle kommun som sa sig inte behöva någon information alls. I praktiken var det
över 95% av alla anhöriga som på något sätt var i behov av information i rollen som
anhörig. I Kristinehamns kommun var denna siffra 83%. Överlag var behovet av
information stort bland anhöriga.
Det fanns både positiva och negativa aspekter med att betrakta anhörigas behov med
avseende på den närståendes funktionsnedsättning. För anhöriga till närstående med
psykiskt funktionshinder samt missbruk/beroendeproblematik var det viktigt att
behoven analyserades utifrån den närståendes funktionsnedsättning. Svårigheten
var att närstående kunde ha fler än en funktionsnedsättning och därmed kunde en
anhörig "tillhöra" fler grupper.
Det är komplext med stöd för anhöriga. Det finns insatser till närstående som
indirekt blir till stöd för den anhörige. Men det är den närstående i slutändan som
ansöker om detta. Vill inte den närstående ta emot hjälp, en insats, så kan det leda
till att den anhöriga får ta konsekvenserna av detta.
Enligt utvärderingen av Säffle kommuns befintliga stöd var det över 80% som var
nöjda eller mycket nöjda med stöd som trygghetsplats, växelvård, dagvård för
personer med minnesproblem samt dagverksamhet. De två sistnämnda stöden hade
dock en mindre andel som var mindre nöjda eller inte alls nöjda än vad växelvården
och trygghetsplats hade. Stödet "avlastning i hemmet" hade flest, 53,3% varit mycket
nöjd med. Å andra sidan så var det 40% som var mindre nöjda eller inte alls nöjda
med samma stöd. I Kristinehamns kommun var det fyra typer av stöd som över 82%
av anhöriga var nöjda eller mycket nöjda med. Dessa var, rangordnat,
trygghetsplats, hemvårdsbidrag, dagvård för personer med minnesproblem samt
avlastning i hemmet.

Doktorsavhandling

Even though medical improvements have reduced the mortality rates for patients afflicted by stroke, mortality during the first few days at hospital is significant. Today, there is an increasing recognition that the principles of palliative and supportive care are important components of meeting the needs of patients severely afflicted by stroke even in acute settings. However, there is limited knowledge about which factors have an impact on the end-of-life care (EoLC) for these patients or about how these last days of life are experienced from the family members' perspective. Aim The overall aim of this thesis was to describe the EoLC of patients severely afflicted by stroke and to identify factors impacting upon EoLC for the patients and their family members in Sweden out of various contexts and methods. Design and Methods This thesis is based upon four papers employing qualitative, quantitative and mixed-method designs. Paper I is a qualitative study based on focus-group interviews with 41 health-care professionals (HCPs) in different professions related to stroke care at three stroke units. The aim was to study ethical dilemmas, different approaches and what consequences they had among health HCPs; the data was analysed using content analysis. The result inspired the design and conduct of the following studies. Paper II is a quantitative comparative study based on a retrospectively registered questionnaire from the Swedish Registry of Palliative Care (SRPC). Patients dying of stroke (n =1626) were compared with patients dying from cancer (n=1626), according to symptoms, symptom management and communication with the patient and family members during the last week of life. Data was statistically calculated using OR. Paper III is a mixed-method study employing a sequential explanatory design. In the first, quantitative, part, 995 stroke patients who died in hospital were compared with 631 stroke patients who died at nursing homes, according to symptoms, symptom management and communication with the patient and family members during the last week of life. The quantitative data was statistically calculated using OR and the qualitative data was analysed using content analysis. Nine significant differences drawn from the quantitative results regarding care were chosen to be discussed by twelve nurses working in stroke units. Paper IV is a qualitative interview study with the aim to study the family member descriptions of the trajectory from admission to the hospital until their loved one died. A semi-structured interview guide was used, and data was analysed using thematic analyses. Results Factors that had an impact on EoLC were consequences related to the difficulties around decision-making about withholding or withdrawing life-sustaining treatment. Non-decisions or not holding to the decision generated communication barriers causing obstacles in inter-professional collaboration and ethical dilemmas within the team (Study I). The absence of a mutual approach to care resulted in underprovided palliation, undignified medical treatment and ambiguity in care, generating feelings of distrust among the family members. The results described in Study I of underprovided palliation were further investigated in Study II. The differences in knowledge about whether symptoms were present or not in patients afflicted by stroke compared to patients with cancer were significant. For example, the HCPs in the stroke group did not know if pain was present nine times more frequently than in the cancer group. These differences in knowledge about whether symptoms were present of not were also identified in Study III. Here, HCPs at the nursing home more often had knowledge about whether a symptom was present in patients dying of stroke or not, compared to HCPs at hospitals. This study also identifies differences in the presence of the symptoms being compared and whether the patient's suffering was fully relieved. The nurses working at stroke units explained that these differences were a consequence of the stroke unit's aim (saving lives), no previous relationship to the patient and ambiguity in the evaluation of symptoms. The patient's altered levels of consciousness increased the difficulties in evaluation. In addition, the hospital setting's aim increased the risk of prolonged treatment, for example nutrition supplied during the last day of life, and underprovided palliation of for example, pain compared to nursing homes. In Study IV, family members were seeking trust through mutual collaboration and creating relationships with the HCPs. If the family did not feel that their search for trust was taken care of, it generated feelings of distrust allied with anxiety and memories of failing to do the best for their loved one at in the end of life. During the trajectory at the hospital, family members were "seeking trust in chaos", "seeking clarity when deciding about living or dying" and finally they were "seeking trust in care as a final act of love". Conclusions: The results of this thesis suggest that the absence of a coherent approach contributes to developing ethical dilemmas within the HCPs. The ambiguity in care had an impact on the quality on EoLC, with an increased risk of unnecessary suffering and questionable symptom management. The prevailing culture at acute-care hospitals affected the HCPs' attitudes towards EoLC, with attention being predominantly on life-sustaining treatments. There is an increasing recognition of the need for improvement in the PC approach at acute-care hospitals in order to create equal quality of care during end of life, irrespective of the place of death for patients dying of stroke. Furthermore, family members need to feel trust, which is achieved through relationships and collaboration with HCPs. In the striving to accomplish a wholly compensatory care of quality during the trajectory, this thesis can be a source of knowledge and guidance for nurses and for teams at the stroke unit.

Research, debate and policy on young carers has been welcomed by the carers movement and children's rights practitioners alike, but challenged by some disability rights authors who suggest defining the children of disabled parents as 'young carers' serves to undermine both the rights of disabled people and the rights of children. Among those putting forward this view are Jenny Morris and Lois Keith (Critical Social Policy, 1995, Issue 44/45). Here, we respond to the disability rights critique on behalf of academics working in the field of young carers, policy-makers and practitioners and, more importantly, on behalf of children who care.

Research, debate and policy on young carers has been welcomed by the carers movement and children's rights practitioners alike, but challenged by some disability rights authors who suggest defining the children of disabled parents as 'young carers' serves to undermine both the rights of disabled people and the rights of children. Among those putting forward this view are Jenny Morris and Lois Keith (Critical Social Policy, 1995, Issue 44/45). Here, we respond to the disability rights critique on behalf of academics working in the field of young carers, policy-makers and practitioners and, more importantly, on behalf of children who care.

Aims.  To describe relatives' perceived participation in discharge planning for patients with stroke and identify correlates to perceived participation.

Background.  Stroke affects both patients and their relatives and previous research shows that relatives were often dissatisfied with their perceived involvement in discharge planning and the information they get.

Design.  Prospective cross-sectional study.

Methods.  The study comprised 152 consecutively enrolled relatives (mean age = 60·8 years) of acute stroke patients admitted to a stroke unit in southern Sweden during 2003–2005. Data were collected through interviews 2–3 weeks after discharge using 'Relative's Questionnaire about Participation in Discharge planning'. This instrument measures perceived participation in three subscales: R–Information–Illness, R–Information–Care/support, and R–Goals and Needs. The Overall Rating of Relative's Perceived Participation in Discharge Planning was measured by a visual analogue scale (VAS) (1–10 score).

Results.  Among the relatives, 56–68% reported positively according to R–Information–Illness, but 46–53% perceived that they did not receive any information about care/medication/rehabilitation/support. About 80% perceived no participation at all in goals and needs. The mean value of the VAS was 3·89 (SD 3·40) score. Regression analyses revealed that longer stay at hospital, patients with higher education, and relatives of female patients and female relatives were associated with relatives' perceptions of higher participation in discharge planning.

Conclusions.  Relatives perceived that they needed more information and knowledge about stroke and care/medication/rehabilitation/support. They also needed to be more involved in goal-setting and in identifying patient needs. Professionals should take into consideration these associated variables to improve relatives' perceived participation.

Relevance to clinical practice.  Clinicians should give more attention to the altered situation of stroke patients' relatives when planning for continuing care and when setting postdischarge goals for the patients. The professionals need to develop strategies to involve relatives in sharing information, goal-setting and needs assessment in discharge planning.

Background and aim: The discharge process (DP) is full of well-known risks. The general aim of this thesis was to shed more light into how different stakeholders experience the DP and evaluate the older persons' and their relative's preparedness for life at home after hospital discharge. Materials and methods: Both qualitative (Studies I, II, IV) and quantitative (Study III) research methods were selected. In Study I different care professionals (n=32) were interviewed in eight focus groups. Study I used a phenomenological method. In Study II older persons with home care nursing (HCN) and their relatives (n=26) were interviewed, and a grounded theory method was used. In Study III data were collected through a questionnaire among older persons and their relatives (n=152) and the questionnaire's psychometric properties were evaluated. Study IV was based on the data in Studies I and II and used an excursive interpretation based on a phenomenological approach and reflective lifeworld research. Results: The older persons and their relatives, as well as the care professionals, viewed the DP as ambiguous. Care and planning were described as fragmented. Three themes were important for care professionals' cooperation, actions and the outcome of the DP, but also associated with various difficulties and problems. The main concern of the older persons and their relatives was worry about not being sufficiently prepared for life at home. A theoretical model was created that illustrates whether the older persons and their relatives felt prepared or unprepared for life at home at discharge. The care professionals' skills were shown to be of utmost importance to satisfy the preparatory needs of the older persons and their relatives in three significant areas. The questionnaire showed that fifty-three per cent of the older persons and their relatives reported being insufficiently prepared. Factors associated with being insufficiently prepared were poor health at the time of the discharge and not asking for information. The DP is shown to be a critical event with illness making the meaning of life's fragility abruptly explicit and an unpredictable threat to getting on with one's life. The DP is characterised by experiences of being in-between that is contextual, bodily and existential for the older persons and the relatives accentuating their vulnerability. The relationship with care professionals and others, bodily conditions and life circumstances influence the in-between experience. Without the professional support and cooperation among them in the DP, the older persons run the risk of being lost and powerless throughout the DP. Conclusions: The DP deeply affects older persons and their relatives. When care professionals use a disease-led approach in their encounter with older patients and follow solely medical routines, they may lose focus on the patients' health processes. The older persons' and their relatives' experiences of exposedness and vulnerability due to illness, bodily, existential or contextual uncertainty indicate a threatening existence in the DP. The older persons and their relatives can easily be lost in an in- between experience illuminating the difficulties embedded in the illness, care and the DP in an older person's life. Care professionals need to acknowledge the individual and their everyday world and give follow-up support at home. This would make the DP a strong bridge between the hospital and home. The PPLH questionnaire developed from the theoretical model can be used to provide information that may prove useful in improving the DP from the perspective of older persons and their relatives and also as an assessment tool to identify and satisfy needs among older persons and their relatives both at hospital and at home.

We conducted two studies to examine parameters of social attention in contingency awareness training using switch activation with individuals who had multiple profound disabilities. In Study 1 we compared leisure devices and social attention as reinforcing stimuli with 5 individuals. Results indicated the reinforcing qualities of social attention over leisure devices with 2 individuals and documented the importance of session length in training. In Study 2 we investigated idiosyncratic behaviors as indicators of responsiveness with 3 of the 5 original participants as they activated switches. Behavior changes during switch activation versus nonactivation times in the leisure device and social attention conditions suggested volitional movement supporting contingency awareness and preference. Implications for clinical practice are discussed. © American Association on Intellectual and Developmental Disabilities.

Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.

Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.

A rich and full exploration of the myriad of instances where a mourner is deprived of the catharsis shared grief brings. Provides numerous interventions designed to help patients recognize and explore their loss, and find meaningful and appropriate ways to resolve their grief.

I denna rapport redovisas den första delen av regeringsuppdraget om diskriminering. Den omfattar en undersökning om barns, elevers och studerandes uppfattningar om och upplevelser av situationer där diskriminering och trakasserier förekommer i förskolan, grundskolan, obligatoriska särskolan, gymnasiesärskolan, särvux och gymnasieskolan samt i den kommunala vuxenutbildningen/SFI. De övriga delarna i detta regeringsuppdrag finns redovisade dels i Skolverkets rapport "Tillgänglighet till skolors lokaler och valfrihet för elever med funktionsnedsättning", dels i Skolverkets rapport "Barn- och elevskyddslagen i praktiken. Förskolors, skolors och vuxenutbildningens tillämpning av lagen"

During the past 10 years nearly 80 studies on disorganized attachment involving more than 6,000 infant-parent dyads have been carried out. The current series of meta-analyses have established the reliability and discriminant validity of disorganized infant attachment. Although disorganized attachment behavior is necessarily difficult to observe and often subtle, many researchers have managed to become reliable coders. Furthermore, disorganized attachment shows modest short- and long-term stability, in particular in middle class environments, and it is not just a concomitant of constitutional, temperamental, or physical child problems. The predictive validity of disorganized attachment is established in terms of problematic stress management, the elevated risk of externalizing problem behavior, and even the tendency of disorganized infants to show dissociative behavior later in life. In normal, middle class families, about 15% of the infants develop disorganized attachment behavior. In other social contexts and in clinical groups this percentage may become twice or even three times higher (e.g., in the case of maltreatment). Although the importance of disorganized attachment for developmental psychopathology is evident, the search for the mechanisms leading to disorganization has just started. Frightening parental behavior may play an important role but it does not seem to be the only causal factor involved in the emergence of disorganized attachment.

Infant disorganized attachment is a major risk factor for problematic stress management and later problem behavior. Can the emergence of attachment disorganization be prevented? The current narrative review and quantitative meta-analysis involves 15 preventive interventions (N = 842) that included infant disorganized attachment as an outcome measure. The effectiveness of the interventions ranged from negative to positive, with an overall effect size of d = 0.05 (ns). Effective interventions started after 6 months of the infant's age (d = 0.23). Interventions that focused on sensitivity only were significantly more effective in reducing attachment disorganization (d = 0.24) than interventions that (also) focused on support and parent's mental representations (d = −0.04). Most sample characteristics were not associated with differences in effect sizes, but studies with children at risk were more successful (d = 0.29) than studies with at-risk parents (d = −0.10), and studies on samples with higher percentages of disorganized attachment in the control groups were more effective (d = 0.31) than studies with lower percentages of disorganized children in the control group (d = −0.18). The meta-analysis shows that disorganized attachments may change as a side effect of sensitivity-focused interventions, but it also illustrates the need for interventions specifically focusing on the prevention of disorganization.

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

Abstract
AIMS:
To consider the evidence of effect from English language, empirically based quantitative evaluations of community-based interventions for bereaved children; community-based interventions being understood as those taking place outside a clinical setting.
METHODS:
MedLine, PsychInfo, Applied Social Sciences Index and Sociological Abstracts were searched for documents containing the words 'child', 'bereavement' and 'program', 'group', 'intervention', 'support' or 'evaluation'. The criterion for inclusion was that studies use a control group or pre- and post-test measurements using a standardized instrument.
RESULTS:
Nine relevant studies were identified. However, empirical evidence of positive outcomes for children was limited and compromised by methodological weaknesses in the design of the studies. Small sample sizes, irregular attendance, high levels of attrition, short time scales between pre- and post-testing and difficulty in developing appropriate instrumentation, including assessment of adherence to the agreed intervention programme, all created problems.
CONCLUSIONS:
The case for universal inclusion of this group of children in such support programmes remains unproven, and further exploration of the outcomes of a range of different community interventions is required, with a specific focus on long-term and/or unwanted effects and evaluation of the basis for referral.

Fifty elderly bereaved men and women, who received bereavement counseling by a physician and a psychologist at 3 separate occasions during the year after loss, were followed during another 10 years in regard to morbidity and mortality, as some earlier studies have indicated increased risk during widowhood. Days of hospital care and mortality rates during 5 and 8 years, respectively, were the primary outcome variables. A group of representative married subjects was used for comparison purposes. The results showed no difference between the groups in the number of days of care before loss, nor did the days of hospital care after the loss differ. The mortality rate was similar in both groups. This may suggest that bereavement counseling has a preventive effect regarding health and survival, but this should be further evaluated in controlled studies before counseling programs can be recommended.

Limited information is available on the long-term effects of providing care for adults when caregiving begins in childhood in the United States. The current study provided an examination of the effects of youthful caregiving on the mental health of these persons when adults, and provided a description of their early family relations. Twenty-four individuals, 21 to 58 years old, were given brief phone interviews with semistructured questions about their early caregiving experiences, and then they completed questionnaires on their early caregiving experiences, mental health, and early parent–child relations. To be included, respondents must have provided primary caregiving assistance (i.e., bathing, feeding, etc.) for a parent or adult relative when the caregiver was under 21 years old. Results showed that the sample reported more positive mental health than negative mental health, though 42% had high depressive scores on the total CES-D. Individuals who reported fathers as too protective reported less current positive mental health. Early caregiving is not associated with poor mental health in adulthood for many young caregivers. However, some individuals do appear at risk of depression in adulthood.

Psychosocial adjustment in children of alcoholics (COAs; N=125) was examined before and at 3 follow-ups in the 15 months after their fathers entered alcoholism treatment. Before their fathers' treatment, COAs exhibited greater overall and clinical-level symptomatology than children from the demographically matched comparison sample, but they improved significantly following their fathers' treatment. Children of stably remitted fathers were similar to their demographic counterparts from the comparison sample and had fewer adjustment problems than children of relapsed fathers, even after accounting for children's baseline adjustment. Thus, COAs' adjustment improved when their fathers received treatment for alcoholism, and fathers' recovery from alcoholism was associated with clinically significant reductions in child problems.

European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work-care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data for 1994-2001, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. For the countries included in the study, the effects of informal caregiving seem to be more negative in Southern Europe, less negative in Nordic countries, and in between these extremes in Central Europe. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the lesser degree of coercion in the caring decision. Adapted from the source document.

BACKGROUND:
This is the first randomized controlled multicenter trial to evaluate the effect of two treatments of maternal attention-deficit hyperactivity disorder (ADHD) on response to parent-child training targeting children's external psychopathology.

METHODS:
Mother-child dyads (n = 144; ADHD according to DSM-IV; children: 73.5% males, mean age 9.4 years) from five specialized university outpatient units in Germany were centrally randomized to multimodal maternal ADHD treatment [group psychotherapy plus open methylphenidate medication; treatment group (TG): n = 77] or to clinical management [supportive counseling without psychotherapy or psychopharmacotherapy; control group (CG): n = 67]. After 12 weeks, the maternal ADHD treatment was supplemented by individual parent-child training for all dyads. The primary outcome was a change in the children's externalizing symptom scores (investigator blinded to the treatment assignment) from baseline to the end of the parent-child training 6 months later. Maintenance therapy continued for another 6 months. An intention-to-treat analysis was performed within a linear regression model, controlling for baseline and center after multiple imputations of missing values.

RESULTS:
Exactly, 206 dyads were assessed for eligibility, 144 were randomized, and 143 were analyzed (TG: n = 77; CG: n = 66). After 6 months, no significant between-group differences were found in change scores for children's externalizing symptoms (adjusted mean TG-mean CG=1.1, 95% confidence interval -0.5-2.7; p = .1854), although maternal psychopathology improved more in the TG. Children's externalizing symptom scores improved from a mean of 14.8 at baseline to 11.4 (TG) and 10.3 (CG) after 6 months and to 10.8 (TG) and 10.1 (CG) after 1 year. No severe harms related to study treatments were found, but adverse events were more frequent in TG mothers than in CG mothers.

CONCLUSIONS:
The response in children's externalizing psychopathology did not differ between maternal treatment groups. However, multimodal treatment was associated with more improvement in maternal ADHD. Child and maternal treatment gains were stable (CCT-ISRCTN73911400).