Bibliotek

OBJECTIVE:
To systematically review the literature on published randomized controlled trials (RCTs) of cognitive behavioral therapy (CBT) for adult ADHD and to establish the effectiveness of CBT in reducing ADHD symptoms.

METHOD:
A systematic review of nine RCTs and two subsequent meta-analyses of eight of the studies were conducted.

RESULTS:
Just nine studies were identified, of generally good quality but with some limitations. Four trials (total N = 160) compared CBT with waiting list controls, and three trials (total N = 191) compared CBT with appropriate active control groups. Meta-analyses showed that CBT was superior to waiting list with a moderate to large effect size (standardized mean difference [SMD] = 0.76, 95% confidence interval [CI] [0.21, 1.31], p = .006) and superior to active control groups with a small to moderate effect size (SMD = 0.43, 95% CI [0.14, 0.71], p = .004).

CONCLUSION:
These results give support to the efficacy of CBT in reducing symptoms of ADHD post-intervention.

The aim of the present study was to compare the parenting styles in parents with and without adult attention deficit hyperactivity disorder (ADHD) who had children with ADHD. It was a case-control study with convenience sampling strategy. Participants were recruited from the parents of previously diagnosed children with ADHD referred to Imam Hossein Hospital, Tehran/ Iran. Ninety parents with adult ADHD and 120 normal parents were chosen by Conner's Adult ADHD Screening Scale (CAARS) and psychiatrist interview. Using Baumrind Parenting Styles Questionnaire and Arnold Parenting Scale, parenting styles were assessed in both the groups. Results from independent samples t-test indicated that Authoritarian parenting style (F = 0.576, p 0.022) and Over reacting style (F = 7.976, p 0.045) were significantly higher in cases. On the other hand, controls were using Permissive style (F = 0.131, p 0.044) more than cases. The results are consistent with prior studies; these findings can improve the content of parent training for children with ADHD, who have adult ADHD themselves.

Healthcare professionals' experience of being family member of a patient can contribute to knowledge development and organizational learning in further ways than the experiences of general family members. However, there is little research on healthcare professionals' experience being on 'the other side of the bed'.
OBJECTIVE:
To describe how healthcare professionals understand the role of being a healthcare professional and a family member of a patient admitted to hospital.
DESIGN:
Qualitative with a phenomenographic approach.
SETTING:
Three Swedish hospitals.
PARTICIPANTS:
All healthcare professionals in three hospitals were invited. Twenty-one volunteered for the study and 18 met the inclusion criteria; to have one year of professional experience and to have visited the family member in hospital daily during hospitalization. Family members in maternity or psychiatric care were excluded.
METHODS:
Semi-structured interviews were used for data collection. Transcripts were analyzed with a phenomenographic method to describe variation and commonality in the ways of understanding the phenomenon under study.
RESULTS:
Four dominant ways of understanding the phenomenon were identified; the informed bystander, the supervisor, the advocate and the carer. The four ways of understanding were hierarchically related with "The informed bystander" being least involved in the care of the family member and "The carer" more or less taking over the patient's care because of inappropriate, unsafe or omitted care. Common for all ways of understanding the phenomenon, except "The informed bystander", was the difficult balance between their loyalty toward the family member and their colleagues among the staff. "The informed bystander" and "The supervisor" are ways of understanding the phenomenon under study that, to our knowledge, has not been described before.
CONCLUSIONS:
This study describes how being a family member of a patient can be understood in four different ways when the family member is a healthcare professional. The findings show similarities to previous studies on general family members as well as nurse-family members of patients in critical care. The need for professional communication, support and coordination will be substantially different if the family member understands his/her role as an informed bystander compared to if they perceive themselves as a carer. The role conflict and ambivalence toward building relationships described are aspects that need further exploration, as does the experience of being forced to care for a family member. Our findings contribute with new knowledge developing patient- and family-centered care.

Abstract
Despite a significant growth in the number older former family carers, they remain largely invisible in carer-related research and literature. To begin to address this deficit, a four-stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes - the concept of 'older former carer', the legacies of caring, influences on the legacies of caring, conceptualising post-caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health-related legacies older former carers' experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub-groups, such as carers of relatives admitted to a care home, than others. Methodology-related weaknesses include small sample sizes and a focus on a single, often condition-specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post-caring tends to be viewed as one of the final temporal 'stages' of the carer's 'care-giving career', a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer - namely formerality - as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding.

Abstract
The efficacy of group parent training was assessed in improving compliance and time on task in preschoolers with attention-deficit disorder with hyperactivity. Positive effects were obtained on measures of child compliance, but not on measures of attention. Parental compliance-management skills and overall style of interaction were also positively affected. The use of parent training for early intervention with ADDH children is discussed.

Abstract
OBJECTIVE:
The purpose of this study was to develop a clinician-based cognitive, psychoeducational, preventive intervention for families with parental affective disorder that would be suitable to widespread use, test its feasibility and safety, and define the areas affected by the intervention. The intervention was designed to increase understanding of parental illness and resilience in the children.
METHOD:
The authors studied the first seven families (14 parents) to receive the intervention. Enrollment criteria included affective disorder during the preceding year in at least one parent, presence of at least one child between the ages of 8 and 14 years who was not psychiatrically ill at the time of participation, and willingness to participate in the research study. The intervention consisted of parent, child, and family sessions. Assessment included semistructured interviews with parents about affective disorders, standard ratings of marital satisfaction and therapeutic alliance, and a recently developed semistructured interview to assess response to the intervention.
RESULTS:
Overall satisfaction with the intervention was rated moderate to high by parents. No harm was reported. Ten of 14 parent subjects reported five or more behavior and attitude changes that they attributed to the intervention. The most frequent behavior and attitudinal changes reported were increased discussion of the illness and related issues and increased understanding of information about affective illness.
CONCLUSIONS:
The authors conclude that the intervention is safe and feasible in families with parental affective disorder.

Katarina är inte sextio år med utflyttade barn, en trygg karriär och all tid i världen när hennes mamma drabbas av en demenssjukdom. Katarina är strax under fyrtio, chef, fru och trebarnsmamma. Hon lever i sandwichgenerationen, klämd av krav både uppifrån och nedifrån. Alltid är det någon som behöver henne. Att dessutom tvingas bevittna sin mammas gradvisa nedmontering är en tung process som väcker svårhanterliga känslor vid sidan av sorgen. I synnerhet när den nära och kärleksfulla relationen mellan mor och dotter inte är så självklar som den borde vara.

Lex Katarina är en bok om skuld, skam och otillräcklighet, men också om den vardagsglädje, utveckling och försoning som skymtar bakom molnen.

I Sverige finns mer än en miljon anhöriga som vårdar eller stöttar en närstående med fysisk eller psykisk ohälsa eller funktionsnedsättning. Även om var och en har sin unika historia är det mycket som förenar oss.

"Anhörig i ett hav av känslor" ger röst åt våra berättelser. Om ovisshet och oro, otillräcklighet och frustration, skuld och skam, sorg och maktlöshet. En situation som kan utveckla oss som människor, men också utmana och slita ut oss. Det handlar om avgrunder och guppande känslohav, men också om stillsamma solgläntor och fascinerande utsiktsplatser.
Boken vänder sig till dig som själv är anhörig. Här kan du få igenkänning, förstå att du inte är ensam om det du går igenom och hitta vandringsstavar för din resa. Det är också en använd-bar bok för dig som möter anhöriga i din profession eller ditt ideella engagemang.

Fönstervy består av en samling tankekorn och dikter som har tillkommit under 25 års tid under en svår livsresa. Här och där har det glimtat ljust med dels galghumor och dels ren glädje. Livet, ja. Hemskt och härligt, inget att ta på för stort allvar men ändå enormt värdefullt - kontrasternas resa. 

Fönstervy är en samling av de kuriositeter man kan få syn på under en resa vidare någonstans. 

Melle duckar för en sko som kommer flygande. Det kokar i Moas huvud och då kastar hon saker. Trots att Melle är van vid Moas utbrott så tycker hon att det är jobbigt. Speciellt i skolan ...

Det är tur att Moa är rolig också, annars skulle Melle inte vilja vara Moas storasyster.

Hur är det egentligen att ha ett syskon med adhd? Det vet Melle. Det är som en bergodalbana. Ibland är det lite läskigt och man kan få ont i magen, men ofta är det väldigt roligt med mycket skratt. Vad händer en helt vanlig dag hemma hos Melle? Hur tänker och känner hon när hennes lillasyster blir arg eller hittar på hyss?

• "En ljus beskrivning av en mors resa genom glömskans mörker" Göteborgs-Posten"Många böcker har jag läst om anhörigskapet vid demenssjukdom, än fler berättelser har jag lyssnat till i samtal. Den här boken kommer jag att bära med mig mer än någon annan. Den berör så djupt och Brun berättar så mänskligt." UNT"Och visst är det en paradox att smärtpunkterna, ja rentav känslan av Guds frånvaro kan frammana något så vackert och hoppfullt som denna roman. Men så är det ju också med författarskap som djupnar, där orden laddas av allt större erfarenhet, närvaro och mänsklig blick." Svenska DagbladetDet börjar vid slutet. En mamma är död. Det slutar vid början. Innan rädslan när Jonas och hans pappa märker det hon själv redan anar. Kortspelet hon förlorar gång på gång. Lunchen som lagas direkt efter frukost. Kassar som fylls med fel saker, örhängen, julkort och skoluppsatser. Försommarens syrener som inte längre väcker någon reaktion, eftersom hon inte längre minns att de doftar. En gång, innan hon började glömma, arbetade hon själv med minnet. Nu är hon yngst på demensboendet.En person som glömt vem hon är, finns hon kvar? Är det samma människa fastän personligheten bleknar bort? Och vad är störst? Minnet eller kärleken? Jonas Brun skriver om kampen med vården, om hjärnans vindlingar, om förtvivlan och tröst i vardagen med Alzheimers sjukdom."Hon minns inte" är en skildring av minnesförlust och en memoar, en månggrenad berättelse om en mor som skrivs tillbaka till livet. 

Abstract

Across the globe, medical advances and knowledge about health behaviours have allowed remarkable improvements in life expectancy. Although the developments are largely positive, population ageing raises a new set of challenges for policymakers to tackle as the shares of the population in advanced ages are growing. As many men and women as possible are needed to participate in the labour market to widen the tax base that supports national economies. Alongside employment, increasingly many working-age people provide regular assistance to older (65+) family members and relatives who no longer get by in their daily lives without support. A new balance of paid work and unpaid care is thus forming across Europe and beyond, with implications
for both individuals and societies.

En bok för förskolebarn när en mamma får bröstcancer.

Boken är tänkt att användas som stöd och inspiration vid
samtal med ett litet barn när mamma eller närstående
drabbats av bröstcancer. Vi har lagt in frågor till barn som
stöd för samtal och igenkänning. Det finns också fakta,
råd och tips till vuxna i slutet av boken.

It is unclear whether caregiving has an impact on the physical, mental and functional health of older caregivers. This study aimed to describe physical, mental and functional health in relation to family caregiving in old age (60+) over a six-year period. The study comprised 2,294 randomly selected individuals (60-96 years) from the Swedish National Study on Aging and Care, who answered the question on whether they were caregivers and who were followed up six years later. The prevalence of family caregivers was 13.1% and the incidence was 12.4%. Four tracks (T) were identified; T1) Family caregiver both at baseline and follow-up (n = 74), T2) Family caregiver at baseline but not at follow-up (n = 226), T3) non-caregiver at baseline but family caregiver at follow-up (n = 218), T4) non-caregiver both at baseline and follow-up (1,776). Only non-caregivers (T4) reported a decline in mental health, p < .036. Worries about health increased significantly in T2 and T4. The prevalence of caregivers was 13.1% with a high turnover. There are differences between family caregivers and non-caregivers in deterioration in physical and mental health as well as physical function over a six-year period.

PURPOSE: Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure.
METHODS: We purposively selected and recruited informants via participants in another study, thereby conducting interviews over the phone from June 2016 to May 2017. In total, we conducted 14 interviews with 12 informants. All interviews were transcribed verbatim and the content was analysed using a phenomenological hermeneutical approach.
RESULT AND CONCLUSION: Our comprehensive understanding of the meaning of support for these carers is twofold: it is a self-evident struggle for the good life of their relatives and that they want to be carers in partnership. The healthcare system must recognize the efforts of carers and include them in the strategic planning and operational stages of care and treatment for people with long-term illness

BACKGROUND: As the population is ageing, the need for informal caregivers increases, and thus we need to know more about the effects on caregivers. This study aims to determine both cross-sectional and longitudinal associations between perceived limitation of informal caregiving and mental health of caregivers.
METHODS: This population-based cohort study was based on the Swedish Psykisk hälsa, Arbete och RelaTioner (PART) study, and 9346 individuals aged 18-65 were included. Data were collected through questionnaires, interviews and Swedish registers. Informal care was defined as care given to a family member. Self-reported and diagnosed depression and anxiety were included as outcomes. Covariates included sex, age, social support and socio-economic position. Ordinal logistic regression and Cox regression were performed to determine the associations between caregiving and anxiety or depression.
RESULTS: Self-reported depression and anxiety was only increased among those experiencing limitations (adjusted odds ratios [aOR] 2.00, 95% confidence intervals [CI] 1.63-2.47 for depression; aOR 2.07, 95% CI 1.57-2.74 for anxiety)  compared to those not giving care, respectively. The adjusted hazard ratio (aHR) were increased for diagnosed depression (aHR 1.97, 95% CI 1.27-3.05) and for diagnosed anxiety (aHR 1.86, 95% CI 1.06-3.25) among those giving care and experiencing limitations, compared to those not giving care. No significant associations were found in caregivers without limitations. CONCLUSION: Caregivers experiencing limitations showed a significant association with short- and long-term anxiety and depression. This study implies the importance of exploring the degree to which informal caregiving can be provided without adding burden to caregivers.

OBJECTIVES: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. METHODS: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. RESULTS: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. CONCLUSIONS: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.

BACKGROUND AND AIM: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers' experiences of caring for a partner with dementia, their everyday life as a couple and their support needs.

METHODS: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis.

RESULTS: The analysis resulted in one overall theme Being 'alone' striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country; (2) Longing for a place for me and us; (3) Being a carer first and a person second; and (4) Being alone in a relationship.

CONCLUSIONS: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple's relationship for their mutual well-being.

Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse carers of PwD in Sweden. (2)

Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4)

Conclusions: Support to spouse carers of PwD should address the carer-care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.

IMPORTANCE: To better support children with the experience of parental death, it is crucial to understand whether parental death increases the risk of adverse school outcomes.

OBJECTIVES: To examine whether parental death is associated with poorer school outcomes independent of factors unique to the family, and whether children of certain ages are particularly vulnerable to parental death.

DESIGN, SETTING, AND PARTICIPANTS: This population-based sibling cohort study used Swedish national register-based longitudinal data with linkage between family members. Register data were collected from January 1, 1990, to December 31, 2016. Data analyses were performed on July 14, 2021. The participants were all children born between 1991 and 2000 who lived in Sweden before turning age 17 years (N = 908 064).

EXPOSURE: Parental death before finishing compulsory school.

MAIN OUTCOMES AND MEASURES: Mean school grades (year-specific z scores) and ineligibility for upper secondary education on finishing compulsory school at age 15 to 16 years. Population-based cohort analyses were conducted to examine the association between parental death and school outcomes using conventional linear and Poisson regression models, after adjustment for demographic and parental socioeconomic and health indicators measured before childbirth. Second, using fixed-effect linear and Poisson regression models, children who experienced parental death before finishing compulsory school were compared with their siblings who experienced the death after. Third, the study explored the age-specific associations between parental death and school outcomes.

RESULTS: In the conventional population-based analyses, bereaved children (N = 22 634; 11 553 boys [51.0%]; 11 081 girls [49.0%]; mean [SD] age, 21.0 [2.8] years) had lower mean school grade z scores (adjusted β coefficient, 0.19; 95% CI, -0.21 to -0.18; P < .001) and a higher risk of ineligibility for upper secondary education than the nonbereaved children (adjusted risk ratio, 1.36; 95% CI, 1.32-1.41; P < .001). Within-sibling comparisons using fixed-effects models showed that experiencing parental death before finishing ompulsory school was associated with lower mean school grade z scores (-0.06; 95% CI, -0.10 to -0.01; P = .02) but not with ineligibility for upper secondaryeducation (adjusted risk ratio, 1.07; 95% CI, 0.93-1.23; P = .34). Independentof birth order, losing a parent at a younger age was associated with lower grades within a family.

CONCLUSIONS AND RELEVANCE: In this cohort study, childhood parental death was  associated with lower school grades after adjustment for familial confounders  shared between siblings. Children who lost a parent may benefit from additional educational support that could reduce the risk of adverse socioeconomic trajectories later in life

PURPOSE: There is a need to put family caregivers on the cancer survivorship research agenda. Therefore, the aim of this is study is to explore the experiences of being a family caregiver to a patient treated for oesophageal cancer. METHOD: This qualitative study was based on the ongoing nationwide and prospective Oesophageal Surgery on Cancer patients - Adaptation and Recovery study (OSCAR) including patients surgically treated for oesophageal cancer in Sweden and their closest family caregiver. One year after the patient's surgery, each family caregiver received a self-report questionnaire kit to fill in. For the purpose of this study, the responses to the open-ended question "Is there anything else you would like to share?" were used and analysed by conducting thematic analysis.

RESULTS: In total, 112 responses to the open-ended question were transcribed and analysed. The text rendered three themes: Discontinued support from healthcare-mostly a positive experience before surgery and in the acute survivorship phase. However, after discharge from the hospital, the family caregiver felt as though they were left alone, fully responsible for the patient's care. A changed life-unprepared for life-changing situation after the patient received the cancer diagnosis. A feeling that nothing will ever be the same and like your sense of self is lost. Psychological distress-was described as a feeling of being alone. Family caregivers felt invisible and no longer important to family and friends. The patient was the one that mattered.

CONCLUSION: This study indicates that patients and family caregivers would benefit from a more family-centred healthcare, where the patients' as well as the caregivers' perspectives would be acknowledged.

OBJECTIVES: Digital support services may provide informal caregivers with remote access to information and training about care issues. However, there is limited specific data on how factors such as demographics, socioeconomic resources and the caregiving context may influence caregivers' use of digital support services. The aim of this study is to identify associations between informal caregiver's characteristics and the use of the internet to access digital support services in two countries: Italy and Sweden.

SETTING AND PARTICIPANTS: A sample of 663 respondents who have access to the internet participated in a cross-sectional survey by completing the online questionnaire. Respondents were recruited by the Italian National Institute of Health and Science on Ageing and the Swedish Family Care Competence Centre.

PRIMARY AND SECONDARY OUTCOME MEASURES: Logistic regression analyses were performed to assess predictors of caregivers' frequent use of the internet to access digital support services.

RESULTS: Educational attainment (OR 3.649, 95% CI 1.424 to 9.350, p=0.007), hours per week spent caring (OR 2.928, 95% CI 1.481 to 5.791, p=0.002), total household income (OR 0.378, 95% CI 0.149 to 0.957, p=0.040), care recipient relationship to the caregiver (OR 2.895, 95% CI 1.037 to 8.083, p=0.042) and gender of care recipient (OR 0.575, 95% CI 0.356 to 0.928, p=0.023) were significant predictors in the multivariate analysis for the Italian caregivers group. Hours per week spent caring (OR 2.401, 95% CI 1.105 to 5.218, p=0.027) and age of caregiver (OR 2.237, 95% CI 1.150 to 4.352, p=0.018) were significant predictors in the multivariate analysis for the Swedish caregivers group.

CONCLUSIONS: Digital support services could be important tools to empower informal caregivers. When it comes to policy and practice in relation to caregivers, similarly to other broad vulnerable groups, there is no 'one-size-fits-all' approach, and it is therefore important to consider the specific characteristics and needs of both caregivers and care recipients.

BACKGROUND: Informal caregivers to intensive care unit (ICU) survivors may develop post-intensive care syndrome family (PICS-F), including depression, anxiety and post-traumatic stress (PTS). Our primary aim was to investigate associations between caregiver burden in informal caregivers cohabiting with ICU survivors and patients' physical and psychological outcomes.

METHODS: A prospective, multicentre cohort study in four ICUs in Sweden. Adults cohabiting with ICU patients included in a previous study were eligible for inclusion. Three months post-ICU, informal caregivers received questionnaires assessing caregiver burden, health-related quality of life (HRQL) and symptoms of depression, anxiety and PTS. In parallel, patients reported their three-month physical and psychological status via validated questionnaires. The primary outcome of this study was to compare caregiver burden in informal caregivers to patients with and without adverse physical and psychological outcomes 3 months post-ICU. Secondary outcomes were correlations between caregiver burden and informal caregivers' mental HRQL.

RESULTS: Among 62 included informal caregivers, 55 (89%) responded to the follow-up questionnaires. Caregiver burden was higher among informal caregivers to patients with an adverse outcome, compared to informal caregivers to patients without an adverse outcome, caregiver burden scale score mean (±standard deviation) 52 (11) and 41 (13) respectively (p = 0.003). There was strong negative correlation between caregiver burden and informal caregivers' mental HRQL (rs -0.74, p < 0.001).

CONCLUSION: Informal caregivers to ICU survivors with adverse physical or psychological outcome experience a higher caregiver burden. A higher caregiver burden correlates with worse caregiver mental HRQL. ICU follow-up programs should consider screening and follow-up of informal caregivers for mental health problems

BACKGROUND: Family members provide the majority of informal care for older adults in Sweden. Nevertheless, by providing a range of assistance, peers often emerge as a central to counter social isolation among older adults. Therefore, there is a need to know more about what informal care provision by older adults to their peers means for different groups of older adults.

AIM: This study investigated the types of informal care and support that older adults provide to their peers in Sweden, and how these types of care and support are associated with demographic characteristics and social isolation. We also compared older adults who provide informal care and support with those who do not.

METHOD: For this purpose, we used a national online survey named "Involuntary loneliness among senior citizens" answered by 10,044 older adults enrolled in the Swedish Citizen Panel. We adopted a mixed-method design to analyse the survey data, including free-text options (n = 2155) and numerical data. Social isolation was assessed using a score built from the social loneliness items of the UCLA Loneliness Scale.

RESULTS: In our population, 21.5% of the older adults were providing informal care and support to their peers. Practical/instrumental help was frequently offered by younger participants (<75 years), men and respondents who were less socially isolated. On a general level, the factors that were positively associated with giving informal care and support to peers were older age, being male, retired, married/living in a relationship, living in an urban area/big city and exhibiting greater isolation. Focusing specifically on social support shows that older participants (>80) and those experiencing less social isolation (score < 24) were more engaged in social activities.  CONCLUSION: This paper is unique in exploring the informal peer-caregiver's perceptions of isolation. Data were collected during the COVID-19 pandemic; this highlights the need to recognise informal care and support between older adults and to acknowledge their contributions as an essential component of Swedish civil society, especially during a societal crisis

BACKGROUND: Will being a caregiver further impact the health of a group already at risk of adverse health due to old age? This study aimed to answer the questions whether short- and long-term healthcare consumption and mortality differ between informal caregivers and non-caregivers and between high-burden and low-burden informal caregivers.

METHOD: The study population consisted of 423 caregivers and 3444 controls from the Swedish national general population study 'Good Aging in Skåne'. Caregivers were divided into those reporting high and low caregiver burden and information on caregiver status was collected from questionnaires. Data for mortality and healthcare consumption (inpatient and outpatient visits) were obtained from The National Board of Health and Welfare. Mortality was tested with Cox regression models and healthcare consumption with logistic regression models, adjusted for sociodemographic covariates, Activities of daily living (ADL) and number of chronic diseases.

RESULTS: Caregivers were younger than non-caregivers, had higher educational background, more independent in ADL and more often men. Of 423 caregivers, 73 (17.3%) reported experiencing high caregiver burden. High-burden caregivers were older, more dependent in personal ADL and gave more hours of care than those reporting low burden. In adjusted regression models, we found no differences in either consumption of healthcare nor mortality between caregivers and non-caregivers and high-burden v. low-burden caregivers looking at short-term (1 and 3 years) and long-term (10 and 15 years) follow-up periods.

CONCLUSIONS: Our findings suggest that the characteristic of being a family caregiver does not have an impact on mortality or physical health measured asinpatient admissions or instances of primary care.

Background: Next of kin to older adults over 65 years in municipal home care are concerned whether their older adults' needs are being met. In municipal home care, the registered nurses' leadership is important and complex, entailing multi-artist skills involving the older adults and their next of kin. Yet, little is known about next of kin's experiences of registered nurses' leadership. Thus, the aim of this study was to explore next of kin's experiences of registered nurses' leadership close to older adults in municipal home care. Methods: Individual telephone interviews were conducted with next of kin (n = 11) of older adults from April to September 2020 in two municipalities in western Sweden. Data were analysed using qualitative content analysis. Results: The results are presented with the theme, registered nurses do what they can, including two categories, interaction and competence, and the subcategories, relationship, communication, availability, responsibility, team leadership and cooperation. Registered nurses' leadership was experienced as a balancing act between their commitments and what they were able to achieve. Conclusions: Next of kin's experiences of registered nurses' leadership can contribute knowledge that will strengthen and prepare registered nurses for their leadership roles. This knowledge can support the development of policies for organisational preconditions that ensure quality and safe care to older adults in municipal home care.

We investigate the importance of adult children and/or cohabitation with a partner for older hip fracture patients' probability of independent living, public home care use and hospital readmission. Data from 35,066 Swedish hip fracture patients between 2012 and 2017, aged 65 years, and living at home at the time of the fracture in the Swedish Registry for Hip Fracture Patients and Treatment were linked with national registers. We applied adjusted logistic regression models and Cox proportional hazard models. In total, 959 (4.0%) women and 817 (7.3%) men had no adult children, 13,384 (56.0%) women and 3,623 (32.5%) men had no cohabiting partner and 2,780 (11.6%) women and 1,389 (12.5%) men neither had a cohabiting partner nor adult children. In comparison with women and men who had both a cohabiting partner and adult children, those without a cohabiting partner (i.e. only adult children) and those who neither had a cohabiting partner nor adult children had significantly lower probabilities of returning home (at discharge and after 4 months). They also had a greater probability of both receiving home care and having an increase in the amount of home care they receive. Having a close next of kin and hospital readmission were not associated. In conclusion, absence of a close next of kin, specifically a cohabiting partner, reduces the chance of return to independent living and increases the use of home care after a hip fracture hospitalisation. The findings highlight the importance of family support for older adults living situation after a hip fracture.

Abstract

It is unclear whether caregiving has an impact on the physical, mental and functional health of older caregivers. This study aimed to describe physical, mental and functional health in relation to family caregiving in old age (60+) over a six-year period. The study comprised 2,294 randomly selected individuals (60–96 years) from the Swedish National Study on Aging and Care, who answered the question on whether they were caregivers and who were followed up six years later. The prevalence of family caregivers was 13.1% and the incidence was 12.4%. Four tracks (T) were identified; T1) Family caregiver both at baseline and follow-up (n = 74), T2) Family caregiver at baseline but not at follow-up (n = 226), T3) non-caregiver at baseline but family caregiver at follow-up (n = 218), T4) non-caregiver both at baseline and follow-up (1,776). Only non-caregivers (T4) reported a decline in mental health, p < .036. Worries about health increased significantly in T2 and T4. The prevalence of caregivers was 13.1% with a high turnover. There are differences between family caregivers and non-caregivers in deterioration in physical and mental health as well as physical function over a six-year period.

Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person’s activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family. 

Abstract Objectives Mental health problems are a major concern in the older population in Sweden, as is the growing number of older adults aging alone in their homes and in need of informal care. Using a linked lives perspective, this study explored if older parents’ mental health is related to their children’s dual burden of informal caregiving and job strain. Methods Data from a nationally representative Swedish survey, SWEOLD, were used. Mental health problems in older age (mean age 88) were measured with self-reported ‘mild’ or ‘severe’ anxiety and depressive symptoms. A primary caregiving adult child was linked to each older parent, and this child’s occupation was matched with a job exposure matrix to assess job strain. Logistic regression analyses were conducted with an analytic sample of 334. Results After adjusting for covariates, caregiving children’s lower job control and greater job strain were each associated with mental health problems in their older parents (OR 2.52, p = 0.008 and OR 2.56, p = 0.044, respectively). No association was found between caregiving children’s job demands and their older parents’ mental health (OR 1.08, p = 0.799). Conclusion In line with the linked lives perspective, results highlight that the work–life balance of informal caregiving adult children may play a role in their older parent’s mental health

Parenting a child with cancer creates numerous additional care demands that may lead to increased difficulties in balancing work and family responsibilities. Still, there is limited knowledge of how parents cope with both parenthood and paid work after a child’s cancer diagnosis. The aim of the study was to explore mothers’ and fathers’ experiences of balancing the dual roles of work and parenthood following a child’s cancer diagnosis. Nine focus groups with in total 32 parents of children with cancer in Sweden were conducted. The data was analysed using qualitative content analysis. Three categories were identified: Shifts in the importance of the parent role and the work role, Influence of context and conditions on the balance of roles, and Long-term unbalance of roles. Parents expressed an increased appreciation of time spent with family, but also emphasized the importance of work to counterbalance the sometimes overwhelming parenting demands. The pre-existing financial situation, work situation, and employer behaviour were important factors influencing the parents’ ability to balance work and family. Traditional gender roles influenced how couples divided responsibilities and reflected on their experiences. Mothers and fathers were also met with different expectations, which highlights the need for the healthcare to consider their communication with caregivers. Importantly, the parents expressed how the child’s illness affected their ability to balance work and family for a long time, while the understanding and support from others had steadily declined. Enabling parents to care for their ill child without sacrificing their own career is of utmost importance, and future research should focus on identifying which factors facilitate for parents to achieve a sustainable work-life balance.

Background: Children are affected when parents are ill and health care professionals are bound by law to consider children's need for information on their parent's illness. Effective interventions are available in settings other than primary health care, and possibilities seen by GPs and families have been described previously. Most patients in Sweden are treated in primary health care. It is suspected that parental health problems treated in primary care create a challenge and risk for the children. It is unknown how children and parents negotiate this situation and what strategies they use.AimThe overall aim was to conceptualize the situation of ill parents and their children in primary health care, as a contribution towards the long-term goal of developing suitable and sustainable interventions for children as next of kin in primary care.MethodsAnalysis of interviews with 32 parents and 23 of their children in three primary health care clinics using grounded theory method resulted in a conceptualization of (i) how these children view their situation (Study I) and (ii) a theory on the processes and typologies of upholding family relationships from the perspective of their parents (Study III). A systematic review exploring interventions for children of ill parents in all health care settings globally resulted in a full overview of the literature and, via content analysis, a resulting summary of what children and parents find helpful in interventions (Study II). All three studies were analytically integrated in this thesis.ResultsAnalysis of the interviews revealed that children feel burdened and lonely when their parents are ill (paper 1) and wish their parent to reveal (paper 3). Parents are aware that their children know they are ill and wish their parents to reveal, but often feel incapable to do so. A Grounded Theory conceptualizing what it takes to uphold family relationships in a context of increasing awareness of parental illness (paper 3) was developed. Six different awareness contexts are posed (closed, concealed, suspicious, conflicted, mutual pretense and open) and how parents manage, or often fail to manage them, are conceptualized. The theory hypothesizes that to reveal the parent needs to manage their common awareness context about the illness. And to manage their common awareness context the parent must comprehend the illness and the child needs. Parents and children wish primary health care to support the often-needed learning processes. (Study 1 and 3).Thirty-two studies conducted in mental health (n=22), cancer care (n=6) and HIV care (n=4) were analysed in a systematic literature review. The quantitative studies showed a small-to-moderate effect on the health of the child. Systematic content analysis of qualitative results from mental health and cancer care generated new data concerning what both children and parents found useful in interventions (increased knowledge, improved communication, improved coping strategies and better capacity to handle negative feelings) and additional benefits perceived by the parents (observed changes in their children's behaviour, increased understanding of their own child and enjoyment of the child's respite).

Abstract

Denna rapport bygger på avhandlingen Upholding family relationships in a context of increasing awareness of parental illness. Rapporten beskriver en teori som utvecklats baserat på intervjuer med föräldrar och barn. Rapporten innehåller också förslag på vilken roll primärvården kan ta i arbetet med barn som anhöriga, samt handfasta råd till hälso- och sjukvårdspersonal för att stärka kommunikationen mellan sjuka föräldrar och deras barn.

Abstract

Background

With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research.

Methods

We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers.

Results

Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – the time and compromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust.

Conclusions

In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

Objective: To examine the relationship between care recipient (person with Alzheimer's disease) ability to perform daily tasks and caregivers' (CG) perceived burden and depression, guided by the caregiver identity theory. We also examine the mediating effect of CG abilities to meet their basic needs.Methods: This study utilizes the baseline data of the REACH II study. Spearman's rho (ρ) was used to test for relationships between burden, reported depression, and each ADLs and IADLs. To further explore the relationship between burden and each ADLs and IADLs, structural equation modeling was conducted using Mplus 8.0.Results: Reported CG total scores indicated increased perceived CG burden with greater number of assisted daily activities. CG depression scores were significantly predicted by reported burden scores and caregiver's ability to pay for basic needs. Importantly, 34.6% of variation in CG reported depressions scores were explained by reported burden scores. A multivariate regression model with reported burden scores, controlling for caregiver's ability to pay for basic needs, explained 36.6% of the variance in CG depression scores. Burden scores and CG ability to pay for basic needs significantly predicted depression scores. Results from the three models indicated that CG burden fully mediated the relationship between daily living skill scores and CG depression.Conclusion: Our study findings suggest the need to more closely examine the link between AD caregiving, financial instability, and mental health and bolster support for policies and programs that offer tangible supports and services to offset the costs of informal AD CG.

This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers' views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.

Research results suggest that illness can undermine patients' dignity and that dignity can be understood as an experience formed in communion with others. The aim of this study was, therefore, to illuminate the meanings of lived experiences of dignity as an intersubjective phenomenon from the perspective of dyads in palliative care. The authors analyzed transcripts from interviews with nine dyads using a phenomenological-hermeneutical method. Within the contexts of the dyadic relationship and the dyadic-health care professional relationship, the authors' interpretation revealed two meanings based on the participants' lived experiences: "Being available," related to responding and being responded to in terms of answerability and we-ness, and "Upholding continuity," linked to feeling attached through the maintenance of emotional bonds and being connected through upholding valued activities and qualities in daily living. The authors further reflected on the meanings in relation to philosophically grounded concepts such as presence, objectification, dependence, and dyadic body.

Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland and United Kingdom) and how these are enacted. Until now, research has focused on estimating numbers of AYCs and the impact of caring tasks. A preliminary examination of policy responses to YCs was followed by expert interviews. Case study analysis of 25 interviews and a cross-national synthesis were undertaken before incorporating feedback from former YCs. Different responses to YCs were found, ranging from protection and support in policy and legislation and a definition for YCs, to a total lack of recognition and support. Findings highlight the potential to extend existing legislation, policy and service frameworks to include AYCs, and the importance of recognising and raising awareness of YCs. Awareness should be raised at all levels of society for example with professionals in health, social and education sectors and the general public. A definition for YCs is needed, so AYCs can self-identify and AYCs should be recognised as an important target group for policy makers.

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Abstract: This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15–17 in Switzerland, based on data collected within the Horizon 2020 project ‘Psychosocial support for promoting mental health and well-being among AYCs in Europe’ (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.

Poddprofilen Nemo Hedén har skrivit den viktiga boken Beroende om sin väg ut ur missbruket. Kan du ha problem? Är en anhörig drabbad? Detta är en bok som kommer att göra skillnad. Beroendesjukdomen är en av våra stora dödliga folksjukdomar. Men trots att var tionde svensk är drabbad pratar vi nästan inte om den. Poddprofilen Nemo Hedén har gjort till sin livsuppgift att ändra på den saken.

Beroende är en djupt personlig fackbok med syftet att försöka hjälpa och inspirera människor. Nemo vill avliva alla tabun, missförstånd och fördomar som finns kring sjukdomen. En problematik som faktiskt dödar människor dagligen - helt i onödan. "Jag har skrivit en bok som jag hade behövt att läsa när jag var i missbrukets mörka klor. När jag kände mig ensammast och räddast i hela världen. När det kändes som att livet var slut och som att det inte fanns någon väg ut. Men boken är lika mycket för alla anhöriga. De får lida så otroligt mycket, trots att de är helt oskyldiga", skriver Nemo i förordet.

Boken är tematiskt upplagd och författaren berättar lyhört och kunnigt om alla aspekter av beroendesjukdomen. När är man i riskzonen? Vilken hjälp finns att få? Hur farligt är ett återfall? Vad innebär tolvstegsrörelsen? Hur återskapar man sanna och varaktiga relationer? Och kanske viktigast, hur förlåter man sig själv efteråt?

Som förälder till ett barn med neuropsykiatrisk diagnos känner du dig ofta ensam, missförstådd och som en krigare för ditt barn. Den här boken, skriven av två föräldrar till barn med diagnoser, erbjuder såväl igenkänning som enkla råd så att du själv kan må bättre och orka med npf-familjelivets utmaningar.Hur du tar svåra samtal med skolan, enkla tekniker för återhämtning, hur ni klarar parrelationen eller parerar välmenta råd från personer i omgivningen. När det känns som att nerverna sitter utanpå behövs konkreta verktyg!Författarna bjuder på personliga berättelser ur vardagen, både gripande och igenkännande, blandat med tips från experter på områden som stress och utmattning, svåra samtal samt familjestöd. Här finns hjälp för att orka med att vara en bra förälder, kunna släppa skam- och skuldkänslor och ha kraft över till dig själv. Boken är också till dig som är vän, anhörig och till dig som möter npf-föräldrar i din yrkesvardag, så att du kan stötta och hjälpa på bästa sätt.

'Jag tror fortfarande inte att jag riktigt vilat färdigt från barndomen. Jag undrar om jag någonsin kommer att göra det. Vila färdigt." Så skriver Jenny Jejlid när hon berättar historien om hur det är att växa upp med ett autistiskt och utvecklingsstört syskon. Idag är hon vuxen och arbetar inom omsorgsvärlden, och ser tillbaka på sin uppväxt som lillasyster till en äldre bror som inte var som andra. Hon berättar om när det onormala blir normalt, och när känslor av kärlek och hat blandas med skam och skuld. Men hon berättar också om vägen framåt, och om känslor av hopp.

Jag ställde frågor till mitt gossebarn när vi var ensamma:
- Vilka hemligheter bär du på min son? Vilket ursprung har din gåtfullhet? Vad känner du? Vilket liv finns inom dig? Är det mörk ångest? Känner du glädje? Ser du samma verklighet som jag, eller blir allt kaos inom dig? Vad tycker du om?'

Några månader efter att Fred föddes börjar misstankar växa hos hans mamma Maud. Den lilla bebisen följer inte riktigt samma utveckling som andra barn i hans ålder, och han är svår att få kontakt med. Han är utvecklingsstörd, hon är säker på det. Både sjukvårdspersonal och familj försöker muntra upp henne, det är säkert inget fel på pojken, alla barn utvecklas olika.

Ju äldre Fred blir desto tydligare blir det dock att han är annorlunda från andra barn. I 'Freds bok' berättar Maud om sin egen upplevelse av att ha ett barn med en utvecklingsstörning och autism, men hon berättar också om samhällets och omvärldens reaktioner på hennes älskade son. Detta är en sann berättelse om förtvivlan, sorg och rädsla, men också om lycka och hopp. Men framför allt annat är det en berättelse om kärleken mellan mor och son.

Abstract [en]

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15–17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020–2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Abstract [en]

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Background This study examined the association between early parental death and children’s subsequent mental health, years of schooling, and labour-market outcomes (ie, employment and earnings) in adulthood. Methods We used nationwide register-based data for Finnish citizens born between 1971 and 1986 (n=962 350). Logistic and linear regression models were used to examine the association of early parental death before the age of 21 years with subsequent mental health and labour-market outcomes in adulthood at ages 26–30. The estimated models accounted for an extensive set of demographic and parental characteristics based on longitudinal register data. Results Early-life parental death was found to be consistently associated with a higher risk of hospitalisation due to mental health disorders, higher use of mental health-related medications, and absence from work due to illness in adulthood. The associations were negative regardless of the gender of the child or parent, but the estimated odds ratios were usually quantitatively larger for males than females. When examining the type of outcome, we observed the largest quantitative effects were observed using substance-use disorders and intentional self-harm as outcomes. Moreover, we documented considerable reductions in years of schooling, employment, and earnings in adulthood. Conclusions Parental death before the age of 21 was significantly associated with an increased risk of being diagnosed with a mental disorder and lower level of economic well-being measured by labour-market success in adulthood.

Doktorsavhandling

This thesis aims at contributing to the understanding of digital inequalities among older people, by studying the involvement of older people in research on digital technologies. Some mechanisms driving old age digital inequalities are well known. For instance, people with lower social positions tend to have lower digital skills, to face technology accessibility and affordability issues, and, thus, to engage less with digital technologies compared to their counterparts. However, less attention has been paid to issues related to research and development of digital technologies, such as the involvement of older people in research evaluating new digital technologies. Previous studies indicate that participants and non-participants in research are different one another, with the former being younger, reporting higher educational levels, having better health status than the non-participants. This may bias research outcomes and lead to incorrect conclusions on the utility of digital technologies. The objective of this thesis is to investigate the link between the involvement of older people in digital technology evaluations and the research outcomes. Healthcare is used as exemplifying context in which digital technologies are used. In Study I, participation in digital health research is conceptualised, and a research tool for identifying and measuring selective participation is developed. In Study II and III, factors associated with participation in two digital health intervention studies are analysed. In Study IV, the impact of selective participation on the research outcomes of a digital health study is identified, measured, and corrected. Thesis findings show that participation of older people in digital health research is selective by age, gender, health status, job level, and digital skills, and can indicate a mechanism for digital inequalities. Selective participation biases research outcomes by overemphasising the intervention effects of the over-represented groups over those among the under-represented groups. It can cause an overestimation of the positive effects of digital health technologies due to the under-representation of those groups who do not benefit from the intervention. This promotes digital technologies which increase exclusion risks for some groups of older people and reinforce old age digital and social inequalities. Weighting procedures can be used for mitigating the impact of this mechanism on the research outcomes of intervention studies on digital technologies.

Syftet med denna kartläggning är att beskriva hur många barn som är närstående till någon som
har allvarlig fysisk/psykisk sjukdom/funktionsnedsättning, missbruk eller plötsligt avlidit. Vi
beskriver också hur barn som närstående har det inom områden som rör skola, hälsa, riskbeteenden ANT (alkohol, narkotika och tobak), socialt stöd samt trivsel och framtidstro. Målet med
rapporten är att uppmärksamma livsvillkoren hos barn som närstående i Sörmland.

Abstract
Combining work and care can be very challenging. If not adequately supported, carers' employment, well- being and relationships may be at risk. Technologies can be potential solutions. We carried out a scoping review to find out what is already known about technologies used by working carers. The search included academic and grey literature published between January 2000 and June 2020. Sixteen relevant publications were analysed and discussed in the context of the broader discourse on work-care reconciliation. Technologies discussed can be classified as: (a) web- based technologies; (b) technologies for direct communication; (c) monitoring technologies; and (d) task-sharing tools. Technologies can help to make work-care reconciliation more manageable and alleviate psychosocial and emotional stress. General barriers to using technology include limited digital skills, depending on others to use technol-ogies, privacy and data protection, cost, limited technological capabilities, and limited awareness regarding available technologies. Barriers specific to some technologies include work disruptions, limited perceived usefulness, and lacking time and energy to use technologies. More research into technologies that can address the needs of working carers and how they are able to use them at work is needed.

Det är 80-tal och Philomène och hennes pappa lever ett okonventionellt liv fyllt av kultur och kärlek. Men pengarna är oftast slut. Pappa är Izzy Young, legendaren som upptäckte Bob Dylan och vars Folklore Center i New York utgjorde scen för musiker och poeter som Patti Smith och Allen Ginsberg.

Trettio år senare sjunker Izzy allt djupare in i demens.

En gripande uppväxtskildring och en berättelse om en far och dotter som vägrar släppa taget om livet och varandra.

Abstract [en]
Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services.

Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers.

Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life.

Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention's platform and the choice of content.

Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.

Skriften Planera framtiden – redan idag är ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga. I skriften finns berättelser från familjer, yrkesverksamma och specialister.

Skriften kan vara ett stöd för personer som lever nära någon med flerfunktionsnedsättning. Den kan också användas som underlag för diskussion i olika verksamheter och utbildningar.

Sammanfattning:
Psykisk ohälsa ses ofta som en naturlig del av åldrandet – något
att acceptera snarare än att förebygga eller behandla. Psykisk
ohälsa i hög ålder kan dock ofta vara konsekvenser av sociala
förändringar och försämrad hälsa och funktionsförmåga. Denna
rapport syftar till att ge en översikt av forskningsläget gällande
psykisk ohälsa bland äldre personer; dess förekomst, grupper
som har ökad risk för psykisk ohälsa samt förebyggande och
behandlande arbete. I den här rapporten fokuserar vi på åldersgrupper över 65 år – en grupp med stor variation i hälsa och
levnadsförhållanden.

Abstract
The aim of this exploratory cross-sectional study was to investigate the experiences of relatives of individuals with severe mental illness with and without participation in patient-appointed Resource Group Assertive Community Treatment (RACT). A total of 139 relatives (79 with and 60 without RACT) completed the Family Involvement and Alienation Questionnaire, the Burden Inventory for Relatives of Persons with Psychotic Disturbances, and the family version of the Inventory of Stigmatizing Experiences. We found that relatives participating in RACT experienced a more positive approach from the healthcare professionals, as well as a lower degree of alienation from the provision of care. Relatives who did not participate in RACT were more afraid that their ill next of kin would hurt someone. No other differences in family burden were found. Experiences of family stigmatization were similar in both groups. In conclusion, participating in patient-appointed RACT may contribute to a higher level of satisfaction for relatives in their encounter with healthcare professionals and a more positive alliance. Implementation of RACT in new settings would require adaptation to local conditions to facilitate cooperation between healthcare staff and other relevant services. Staff training focuses on the case manager function and needs assessment, as well as how to create an alliance with the patient and his/her relatives.

Försvarsmakten finansierar sedan 2018 familjehelger för utlandsveteraner och deras familjer som en del av personal- och anhörigarbetet. Familjehelgerna genomförs av anhörignätverket Invidzonen i syfte att stötta och informera föräldrar där den ena föräldern har varit, är utsänd eller kommer att sändas ut på ett internationellt uppdrag.

Nationellt kompetenscentrum anhöriga (Nka) har på uppdrag av Försvarsmakten genomfört en utvärdering av familjehelgerna, vilket redovisas i denna rapport. Fokus för utvärderingen har varit måluppfyllelse och förväntade effekter för deltagande familjer.

Abstract
Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/signifcant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that afects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers' perceived motivations and obstacles to become involved in research. Methods: A cross-sectional survey design was adopted, using frst-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were
either aged 60+ years themselves or were caring for someone who was aged 60+ years.
Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic signifcantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: 'family motivation' and 'the greater good motivation'. These, according to our results, almost equally valued dimensions, described the difering reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion: Our study contributes with new knowledge of informal carers' perceived motivations and obstacles regarding carer involvement in research. Paying attention to the difering motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact.

Doktorsavhandling

Haemophilia is a complex condition to manage, especially for parents of newly diagnosed children, and the illness affects the whole family. The parents are deeply involved in the child's treatment, as they frequently have to administer intravenous injections at home. The overall aim was to investigate perceived burden, lived experiences and to explore experiences of learning processes and illness management in parents of children with severe or moderate haemophilia. In studies I-III, a qualitative approach was motivated to describe experiences of parenting a child with haemophilia. Study III employed a longitudinal design to explore the learning process, while study IV employed a quantitative method with a cross-sectional survey. The results reveal that the mothers often needed to become reconciled both with the fact of the child's illness and their own carriership. However, having a child with severe or moderate haemophilia was life changing for both fathers and mothers. The parents were forced into a situation where they had to learn about and manage their child's illness in daily life. Thus, a desire to become independent of health care professionals in this respect emerged as a key incentive for learning. How this learning process developed and how long it took depended on different factors. For example, parents of children with past or present inhibitors reported higher perceived burden than parents of children without a history of inhibitors. Nevertheless, independently managing home treatment was essential for the parents to feel in control of their life-world again. One conclusion is that female carriers need more knowledge about their carriership and would benefit from counselling before starting a family. One suggestion is that acceptance of the child's illness and reconciliation with the new complex family situation could be promoted with person-centred care. Furthermore, the findings underline that health care professionals need to be aware of an increased burden on parents of young children and particularly the burden on parents of young children with inhibitors.

Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin ( n = 15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care, when they have access to care and treatment and when caregivers collaborate, regardless of healthcare is given by primary care, municipalities or specialist clinics. A sense of "being in good hands" sums up the need for continuous support, shared decision-making and seamless transitions between caregivers. It seems important that healthcare organisations safeguard effective and collaborative models. Moreover, professionals need to plan and perform healthcare in collaboration with patients and next of kin.

Abstract
Background and aims
Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers' experiences and their perceptions of their role.

Methods
Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically.

Findings
Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death.

Conclusions
Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future.

Abstract [en]
Background
When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well-being and daily life.

Aim
This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home.

Methods

In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process.

Findings
In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships.

Conclusion
A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

Kapitel i antologi

Barn i familjehem är ett kunskapsstöd som riktar sig till personal inom socialtjänsten som arbetar med barn i familjehem och är tänkt att ge kunskap i de olika moment som planeringen av umgänge omfattar. Kunskapsstödet utgår från regelverket inom området och bygger på kunskap från forskning och praktik.

illustration: Tomas Gradzki.

innehåller fördjupande artiklar som berör ämnesområdet och starten av utvecklingsarbetet BRA, Barns Rätt som Anhöriga

Abstract [en]
Purpose: In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients.

Methods: Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory.

Results: Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative's safety net. A percieved inability to improve their loved one's well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death.

Conclusions: By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient's experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

Abstract
The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O'Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discusse

Summary
In Norway and the Nordic countries more generally, the awareness of children affected by parental
illness or substance abuse has increased during the last 10 years. There has also been a general shift
from inpatient to outpatient care in public hospitals, and from public hospitals to primary health
care. This shift has increased the number of parents who live at home with more severe illness while
they are in active treatment. They need more informal and formal external care in their own homes.
Until recently, care for the ill, disabled, or elderly within the family has been invisible and barely
mentioned in public documents, statistics, or research reports. This applies even more for children's
caregiving activities. In 2010, the Research Council of Norway called for research of this question,
pointing out that 'little research has been conducted in this field, where children themselves serve as
informants, and more insight is needed about which interventions and measures that provide
effective help'. The main aims of the papers discussed in this thesis have been to explore:
• The extent and nature of the children's caring activities
• The positive and negative outcomes of the children's caring activities
• Factors associated with the children's quality of life (QoL)

Dissertation

Aim: The overall aim of this thesis was to explore the everyday life experiences of living with Home Mechanical Ventilation (HMV) from the perspective of the children and their siblings, parents and personal care assistants. Methods: Study I describes the experiences of personal care assistants (PCA) working with a ventilator-assisted person at home, based on qualitative content analysis according to Elo and Kyngäs (2008), of 15 semi-structured interviews. Study II, using qualitative content analysis according to Graneheim and Lundman (2004), focuses on exploring everyday life experiences from the perspective of children and young people on HMV, by means of interviews with nine children and young people receiving HMV. Study III, using a phenomenological hermeneutical method, illuminates the everyday life experiences of siblings of children on HMV, based on ten interviews. Study IV explores HRQoL, family functioning and sleep in parents of children on HMV, based on self-reported questionnaires completed by 85 parents. Results: PCAs working with a person with HMV experienced a complex work situation entailing a multidimensional responsibility. They badly wanted more education, support, and an organisation of their daily work that functioned properly. Children with HMV had the feeling that they were no longer sick, which included having plans and dreams of a future life chosen by themselves. However, at the same time, there were stories of an extraordinary fragility associated with sensitivity to bacteria, battery charges and power outages. The siblings' stories mirror a duality: being mature, empathetic, and knowledgeable while simultaneously being worried, having concerns, taking a lot of responsibility, being forced to grow up fast, and having limited time and space with one's parents. Parents of children with HMV reported low HRQoL and family functioning in comparison with earlier research addressing parents of children with long-term conditions. One in four parents reported moderate or severe insomnia. Conclusion: Children receiving HMV may feel that they are fit and living an ordinary life, just like their healthy peers. At the same time the results of this thesis indicate that everyday life in the context of HMV is a fragile construct that in some respects resembles walking a tightrope. The fragility of the construct also affects the everyday lives of the families and the PCAs. Ort, förlag, år, upplaga, sidor Borås: Högskolan i Borås, 2019.SerieSkrifter från Högskolan i Borås, ISSN 0280-381X ; 101 Nyckelord [en] Home Mechanical Ventilation, children, siblings, parents, family, personal care assistants, health, family functioning, everyday life

This paper examines intergenerational, interdependent and contextual aspects of wellbeing and acculturative stress in refugee families during resettlement. Particular focus is placed on how children influence their parents. METHOD:
The study is based on interviews with and diary notes from Middle Eastern parents and children residing in Sweden. RESULTS: Analyzes of the narratives show how the direct and indirect influence of the child affects the parents in both negative and positive ways. Acculturative stress follows from unexpected and undesired migration outcomes, such as parent-child conflicts and low school achievement. Such strains add to other hardships refugee families face, for instance, unemployment, welfare dependence, poor housing, and insufficient mastery of the majority language. However, acculturative stress can be alleviated by the children's educational success, and reciprocal practices of love and caring including helping out with chores and supporting each other in different ways. CONCLUSIONS: Children's agency has significant effects on parents' wellbeing, as wellbeing is accomplished in and through relationships with others

Abstract
PURPOSE:
This paper examines intergenerational, interdependent and contextual aspects of wellbeing and acculturative stress in refugee families during resettlement. Particular focus is placed on how children influence their parents. METHOD:
The study is based on interviews with and diary notes from Middle Eastern parents and children residing in Sweden. RESULTS: Analyzes of the narratives show how the direct and indirect influence of the child affects the parents in both negative and positive ways. Acculturative stress follows from unexpected and undesired migration outcomes, such as parent-child conflicts and low school achievement. Such strains add to other hardships refugee families face, for instance, unemployment, welfare dependence, poor housing, and insufficient mastery of the majority language. However, acculturative stress can be alleviated by the children's educational success, and reciprocal practices of love and caring including helping out with chores and supporting each other in different ways. CONCLUSIONS: Children's agency has significant effects on parents' wellbeing, as wellbeing is accomplished in and through relationships with others

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.

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.

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.

This article seeks to describe and explain some of the factors behind the prevalence of women in informal care for seniors. It presents a qualitative study of women who are caring for a frail elderly parent in the Czech Republic. Care is seen as a space where gender and other intersecting identities are performed and this has specific subjective, structural and material consequences. The author draws on biographical interviews with women caregivers and shows how they "do gender and age" in their narratives of how and why they made the decision to provide care and how they actually provide care. The author identifies situations and circumstances in which gender categories and gender relations shift and are destabilised by changes in society. The Czech Republic is a country with a history of state socialism and with traditionally large numbers of women in the workforce, but it also has a highly traditional gender culture.

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.

Kommuner & landsting

Anhörigstöd ska kännetecknas av individualisering, flexibilitet och kvalitet. Men är det anhörigstöd som enligt lag ska erbjudas, ett anhörigstöd för alla?

Med rapporten Ett anhörigstöd för alla? Erfarenheter av att vara anhörig till en person med kognitiv sjukdom – med fokus på utrikes födda vill Migrationsskolan synliggöra anhörigas röst och har i en regional kartläggning tittat närmare på om det anhörigstöd som erbjuds i de skånska kommunerna är ett anhörigstöd för alla.

Rapporten vänder sig till yrkesverksamma som i sitt arbete möter anhöriga till en närstående med kognitiv sjukdom. Med rapporten vill författarna ge läsaren en möjlighet att reflektera över anhörigas erfarenheter av anhörigstöd.

Migrationsskolan är en del av Kunskapscentrum demenssjukdomar och har ett regionalt uppdrag i Region Skåne. Uppdraget består i att arbeta för jämlik och säker demensvård oavsett bakgrund.

Syftet med boken är i första hand att belysa vad som kan hända anhörig och patient vid långvariga sjukhusvistelser. I boken belyses hur det kan gå till i verkligheten, något man kanske inte hinner uppmärksamma vid kortare vistelser.

Texten är skriven ur ett personligt och kritiskt perspektiv. Den belyser fritt ur hjärtat vad jag som anhörig, tänkt och känt i situationer som skakat om mig. Det är också häpnadsväckande hur inblandade tagit för givet att en anhörig automatiskt blir anhörigvårdare utan samtal om vad det kan innebära och vilka rättigheter man har.

Genom att jag skrivit detta har jag kanske mildrat min egen sorg och även distanserat mig en aning från mitt eget ångestfyllda öde.

Det har tagit tid att skriva den här boken. Av olika anledningar har jag varit tvungen att ta pauser för att återhämta mig psykiskt och fysiskt samt att förkovra mig ämnesmässigt. Under långa perioder infann sig inte heller den nödvändiga tid som behövdes för att fortsätta skrivandet.

Boken vänder sig till utbildningar på högskole-, universitets- och gymnasienivå. Den är också viktig för sjukhuspersonal, personal på geriatriska avdelningar, kommunala och privata hemtjänstföretag samt anhöriga och andra intresserade.

PURPOSE: The study aimed to identify factors related to family caregivers' sleep.
DESIGN AND METHODS: The study used a cross-sectional design with objective and subjective methods to measure sleep in the home setting over a 7-day period.
FINDINGS: Findings indicated that poor sleep quality was found in 91.7% of the caregiver participants. Depression, sleep hygiene, burden, and care-recipients' sleep were significant predictors of various dimensions of caregivers' sleep.
PRACTICE IMPLICATIONS: Our study suggests that sleep quality for family caregivers of individuals with dementia varies considerably from night to night. Understanding the complex interrelationships among caregivers' sleep and other contributing variables is an important first step toward the development of individualized and effective treatment strategies.

Doktorsavhandling

Children with autism spectrum disorder (ASD) have shown high variability in learning outcomes in response to evidence-based interventions, suggesting a need for individualization of intervention programmes for each child and his/her family. To explain this variability and develop effective intervention strategies research suggested focusing on identification of important contextual factors that might influence the effectiveness of a specific intervention for each child such as family cultural characteristics and characteristics of service settings and systems. The overarching aim of the thesis was to identify and describe proximal and distal environmental factors and processes affecting implementation and provision of interventions and services for young children with ASD and their families within the context of the Swedish support system. Two theoretical models guided the research project: Bronfenbrenner's bioecological model of human development and Wachs's multiple-influences model of individual variability. The specific objectives addressed using a mixture of qualitative and quantitative methods were: (i) to investigate the scope of reporting ethnicity and other cultural factors in research publications by Swedish scholars involved in empirical research in ASD in children and youth (Study 1); (ii) to explore perceptions of autism, beliefs about its causes, and treatment preferences expressed by parents of children with ASD from culturally, ethnically and linguistically diverse backgrounds (Study 2), and (iii) to explore grandparents' perceived needs in relation to having a young grandchild with ASD (Study 3). The results of data triangulation across the three studies showed that within the context of the Swedish support system, three proximal environmental factors were associated with identification of ASD in young children and families' use of services and interventions before and after the child was diagnosed with ASD. These were parents' belief systems (including perceptions about child's autism, help-seeking behaviours, and treatment preferences); the role of preschool teachers, and the role of other service providers, such as healthcare professionals. Data triangulation singled out seven groups of distal environmental factors: beliefs of extended family; family cultural, ethnic and linguistic background; family socio-economic characteristics (occupation and education level); Swedish formal support system enacted through various legislative acts; international laws and regulations; information sources (mass media and social media), and conceptualization and clinical definition of ASD (as reflected in DSM and ICD classifications). Findings also highlight the importance of taking into consideration of role of ASD researchers as an additional distal environmental factor affecting implementation of interventions and services for culturally and linguistically diverse children with ASD and their families.The results of the studies provide insights into understanding of families' belief systems about ASD causes, treatment preferences, and needs that are essential for planning and provision of family-level early interventions for children with ASD in the cultural context of Sweden. Implications for practice and future research are discussed.

Abstract [en]
OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).

METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.

FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.

CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.

Barn och ungdom

Lillebror har hamsterkinder och stjärnögon. Han har också en ovanlig sjukdom som heter cystisk fibros. Den syns inte på honom men han kommer alltid att ha den. Ibland pussar jag honom på pannan. Då smakar det jättemycket salt. Han är god som saltlakrits. Boken är för barn eller syskon till barn med cystisk fibros, eller andra som har ett barn med cystisk fibros i sin närhet. På ett pedagogiskt och lekfullt sätt förklaras sjukdomen genom en storebrors ögon

Dissertation

Families with sick children often prefer home care to hospital care, and home care services (HCS)
are increasing worldwide with limited evidence on how to provide high quality HCS in different
settings. This thesis aims to provide a comprehensive view of HCS for sick children when provided
by county-based HCS organized to care for adults and children.
A convergent mixed methods design with data-collection 2015–2019 was used. Phenomenographic
analysis of interviews with 36 HCS healthcare professionals showed that caring for children was a
challenging but rewarding task. Hermeneutic phenomenology was used to analyse 37 family
member's lived experience of HCS as a possibility to strengthen family life and health when trustful
alliances were built with HCS healthcare professionals. A review of referrals to HCS during a threeyear period showed that 171 children with various ages, diagnoses and caring needs received HCS.
Calculations of one year's healthcare costs for 32 children who received care both at the hospial
and by HCS showed no increase in costs compared to estimated costs for only hospital care. Annual
productivity losses due to 25 parents' absenteeism from work, estimated from questionnaire-based
data, showed continued productivity losses during periods of HCS.
With trustful alliances between families, HCS and paediatric departments, cost-sustainable countybased HCS can be provided with high levels of family acceptability and positive effects on family
life and health in sick children of various ages, illnesses and stages of illness. However, unequal
accessibility and utilization may jeopardize care based on child and family needs.

Sammanfattning
Mot bakgrund av osäkerheten om hur många barn i Sverige som växer upp med föräldrar som
har alkoholproblem genomfördes en litteraturöversikt inom området av den internationella
vetenskapliga litteraturen och av den nordiska "grå litteraturen", dvs. studier som inte publicerats i vetenskapliga tidskrifter. Tanken var att resultaten i dessa översikter skulle ligga till
grund för att ta fram skattningar av hur stor denna grupp av utsatta barn är i Sverige idag.
Översikten identifierade endast 23 vetenskapliga studier som skattat hur många barn som växer
upp med föräldrar som har alkoholproblem. Dessa studier var begränsade till USA, Norden och
Storbritannien. Genomgången av nordisk grå litteratur identifierade ytterligare 9 studier.

Abstract
Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

Avhandling

Syfte
Avhandlingens övergripande syfte är att undersöka hur intensivvårdsdagboken upplevs av närstående och vårdpersonal inom intensivvård samt att bidra till utvecklingen av nationella riktlinjer avseende dagbokens utformning, innehåll och tillämpning.
Delsyften
I Att undersöka hur närstående upplever en intensivvårdsdagbok, när en
sjuk familjemedlem vårdas på IVA.
II Att undersöka hur närstående upplever en intensivvårdsdagbok, när den
sjuke familjemedlemmen inte överlever vistelsen på IVA.
III Att undersöka hur vårdpersonalen upplever användandet av
intensivvårdsdagbok.
IV Att undersöka tillämpningen av intensivvårdsdagbok på olika
intensivvårdsavdelningar i Sverige samt bidra till riktlinjer när det gäller
dagbokens utformning, innehåll och användning.

Abstract [en]
Aim: The overall aim of the thesis was to explore how the Intensive Care Unit (ICU) diary was experienced by family members, family members of non-survivors and nursing staff in the ICU setting, thereby contributing to the development of national clinical practice guidelines regarding the structure, content and use of the ICU diary.
Methods: A qualitative design was employed for all four studies: a hermeneutic approach was adopted in studies I and II, whilst a qualitative descriptive design with the use of focus groups interviews was chosen in study III. An Instrumental Multiple Case Study design was carried out in study IV.
Main Findings: The diary symbolised the maintenance of relationships with the patients and was a substitute for the usual opportunities for communication. The diary was instrumental in meeting the needs of the majority of participant family members. The diary provided the means to be present at the patient's bedside, to feel involved in caregiving, to maintain hope and to relay relevant information. If the critically ill family member did not survive the stay in the ICU, the diary acted as a form of bereavement support by processing the death of the patient. Nevertheless, some family members found the diary too public an arena to write in as the diary entries indicated visiting patterns which in turn provoke feelings of guilt when the visits were infrequent. Further, not knowing what to write was another source of pressure.
Nursing staff experienced that writing diaries often felt meaningful and led to an increased motivation and engagement in patient care and family support. They expressed that they felt they did something good for the patient and family members. Thus, the diary can be seen as a way to promote person-centred care, where family members were offered to participate in the care. However, in the absence of guidelines or clear guidelines about the use of an ICU diary, then not many patients actually received a diary.
Conclusions: Practice guidelines concerning ICU diaries would help to ensure the more widespread and consistent use of diaries for all ICU patients. As family members may benefit from the diary, even if the patient may not always be able to do so. The ICU diary can be seen as a tool to help promote person-centred care by directly involving family members and providing a human touch, thus helping to counterbalance the highly technical physical environment of ICU.

The purpose of this paper is to reflect on carers' experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.

Design/methodology/approach
This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas' concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.

Findings
Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers' ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.

Originality/value
Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers' needs and ideas, and at the same time balance this with proposed research outcomes.

Abstract:
Despite the well‐known associations between local environment and health, few studies have focused on environment and healthcare utilisation, for instance healthcare seeking behaviour or adherence. This study was aimed at analysing housing type, behaviour based on perceived local outdoor safety, social support, informal caregiving, demographics, socioeconomics, and long‐term illness, and associations with health‐seeking and adherence behaviours at a population level. This study used data from the Swedish National Public Health Survey 2004–2014, an annually repeated, large sample, cross‐sectional, population‐based survey study. In all, questionnaires from 100,433 individuals were returned by post, making the response rate 52.9% (100,433/190,000). Descriptive statistics and multiple logistic regressions were used to investigate associations between explanatory variables and the outcomes of refraining from seeking care and non‐adherence behaviour. Living in rented apartment, lodger, a dorm or other was associated with reporting refraining from seeking care (adjusted OR 1.16, 95% CI 1.00–1.22), and non‐adherence (adjusted OR 1.22; 95% CI 1.13–1.31). Refraining from going out due to a perceived unsafe neighbourhood was associated with refraining from seeking care (adjusted OR 1.59, 95% CI 1.51–1.67) and non‐adherence (adjusted OR 1.26, 95% CI 1.17–1.36). Social support and status as an informal caregiver was associated with higher odds of refraining from seeking medical care and non‐adherence. This study suggests that living in rental housing, refraining from going out due to neighbourhood safety concerns, lack of social support or informal caregiver status are associated with lower health‐seeking behaviour and non‐adherence to prescribed medication.

Abstract [en]
Background: The number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding. The aim of this paper was to describe the partners' experiences of living with a person with chronic illness and how they manage everyday life.

Methods: A descriptive design with a qualitative approach was used. A purposive sample of 16 Swedish partners with a chronically ill spouse were interviewed. The interviews were recorded, transcribed, and analyzed using qualitative content analysis.

Results: Four main themes were identified: Managing challenges in daily life,' Seeking support and use own capabilities to manage life,' Appreciating the good parts of life' and Adapting to constant changes and an uncertain future'. Their experiences of support from formal care providers varied; they expressed the need for more assistance from the health care sector.

Conclusions: The partners experienced many challenges in everyday life when providing informal care for their chronically ill spouse. This affected both their physical and psychological health, as they had limited time for themselves. The partners seemed to receive more support from their informal network than from formal care providers. In handling daily life, the partners balanced demands and resources to identify possibilities to move forward and find meaning in life. This is congruent with theories by Antonovsky, and Folkman and Lazarus that describes meaningfulness and how to handle challenges in everyday life.

Background: The number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding. The aim of this paper was to describe the partners' experiences of living with a person with chronic illness and how they manage everyday life. Methods: A descriptive design with a qualitative approach was used. A purposive sample of 16 Swedish partners with a chronically ill spouse were interviewed. The interviews were recorded, transcribed, and analyzed using qualitative content analysis. Results: Four main themes were identified: Managing challenges in daily life,' Seeking support and use own capabilities to manage life,' Appreciating the good parts of life' and Adapting to constant changes and an uncertain future'. Their experiences of support from formal care providers varied; they expressed the need for more assistance from the health care sector. Conclusions: The partners experienced many challenges in everyday life when providing informal care for their chronically ill spouse. This affected both their physical and psychological health, as they had limited time for themselves. The partners seemed to receive more support from their informal network than from formal care providers. In handling daily life, the partners balanced demands and resources to identify possibilities to move forward and find meaning in life. This is congruent with theories by Antonovsky, and Folkman and Lazarus that describes meaningfulness and how to handle challenges in everyday life.

Background: Given close genetic and emotional connections between a twin pair, the death of a co-twin sibling may considerably affect the mental health of the surviving twin. However, evidence from population-based cohort studies is currently lacking. Methods: Based on the Swedish health registers, we identified 4528 exposed twins whose twin sibling died between 1973 and 2013. For comparison, 22,640 matched unexposed twins (i.e., had twin sibling but didn't experience such a loss) and 4939 full siblings of these exposed twins were included. Controlling for multiple confounders, we used Cox models to estimate hazard ratios (HRs) with 95% confidence intervals (CIs) of clinical ascertained psychiatric disorders after loss of a co-twin. Results: The median age at a co-twin loss was 59 years. Compared to the unexposed twins, exposed twins were at increased risk of psychiatric disorders (HR = 1.65 [95% CI 1.48–1.83]). The association seemed stronger for loss of a monozygotic twin (HR = 2.02 [95% CI 1.56–2.61]) than loss of a dizygotic twin (HR = 1.46 [95% CI1.27–1.67]), and was evident after loss by natural causes (HR = 1.49 [95% CI 1.32–1.69]). Additionally, such risk was most pronounced during the first year after loss and when loss occurred at young age. The HR was 1.55 (95% CI 1.31–1.82) when compared exposed twins to their full siblings who also exposed to loss of a normal full sibling due to the death of the deceased twin. Conclusions: Losing a co-twin is a strong life stressor indicated by the increased subsequent risks of psychiatric disorders among the surviving twins

Huruvida föräldrar med intellektuell funktionsnedsättning (psykisk utvecklingsstörning) klarar av sitt föräldraskap har alltid ifrågasatts. Den här boken vill visa på vikten av relationen mellan föräldrar och barn när man ska ge hjälp och stöd till föräldrar med kognitiva brister. Forskning rörande barn och barns utveckling har länge varit ett viktigt område inom psykologin. Man är dock inte alltid överens om föräldrars betydelse för barns psykiska utveckling. Författarna visar hur psykologiska insatser kan utformas i familjer med komplex problematik inklusive föräldrar med intellektuell funktionsnedsättning. Boken kan utgöra en referensram för att underlätta samarbetet mellan personal inom pedagogisk, social, psykologisk och medicinsk verksamhet. Boken bör med fördel även kunna användas inom utbildningar för behandlingspersonal inom psykolog- och socionomutbildningar

Abstract:
Background Most research on parental bereavement and health have analysed health consequences of parental loss in childhood, while collateral health in adulthood has been less studied. Methods Using register-based population data from Finland, we analyse adult offspring aged 18–50 years with discrete-time hazard models that adjust for offspring and parental socioeconomic and demographic characteristics. In focus are adult children whose parents were alive and lived together at the beginning of the observation period. We compare two culturally distinct but otherwise similar ethno-linguistic groups, Finnish speakers and Swedish speakers. Results The results suggest that bereaved men have an approximately 30% higher death risk than non-bereaved men, while there is practically no difference in women. Associations between parental and child deaths are, as expected, stronger for concordant causes of death than for discordant causes of death. However, some associations for discordant causes of death remain, which may indicate causality. Among Swedish speakers, who have notably higher family stability than Finnish speakers, the death of one or both parents shows a stronger association with own mortality. Conclusions The estimated associations found are generally larger than in the neighbouring country Sweden, which may be due to a stronger obedience to traditional family values and patriarchal family roles in Finland. These findings suggest that the association between parental death and mortality in adult offspring may depend on the societal context as well as on cultural practices. These factors should be increasingly acknowledged in future studies on collateral health.

Parents who lose a child by suicide have elevated risks of depression. No clinical prediction tools exist to identify which suicide-bereaved parents will be particularly vulnerable; we aimed to create a prediction model for long-term depression for this purpose. During 2009 and 2010 we collected data using a nationwide study-specific questionnaire among parents in Sweden who had lost a child aged 15-30 by suicide in years 2004-2007. Current depression was assessed with the Patient Health Questionnaire (PHQ-9) and a single question on antidepressant use. We considered 26 potential predictors assumed clinically assessable at the time of loss, including socio-economics, relationship status, history of psychological stress and morbidity, and suicide-related circumstances. We developed a novel prediction model using logistic regression with all subsets selection and stratified cross-validation. The model was assessed for classification performance and calibration, overall and stratified by time since loss. In total 666/915 (73%) participated. The model showed acceptable classification performance (adjusted area under the curve [AUC] = 0.720, 95% confidence interval [CI] 0.673-0.766), but performed classification best for those at shortest time since loss. Agreement between model-predicted and observed risks was fair, but with a tendency for underestimation and overestimation for individuals with shortest and longest time since loss, respectively. The identified predictors include female sex (odds ratio [OR] = 1.84); sick-leave (OR = 2.81) or unemployment (OR = 1.64); psychological premorbidity debuting during the last 10 years, before loss (OR = 3.64), or more than 10 years ago (OR = 4.96); suicide in biological relatives (OR = 1.54); with non-legal guardianship during the child's upbringing (OR = 0.48); and non-biological parenthood (OR = 0.22) found as protective. Our prediction model shows promising internal validity, but should be externally validated before application. Psychological premorbidity seems to be a prominent predictor of long-term depression among suicide-bereaved parents, and thus important for healthcare providers to assess.

Abstract

ObjectivesThis umbrella review aimed to evaluate whether certain interventions can mitigate the negative health consequences of caregiving, which interventions are more effective than others depending on the circumstances, and how these interventions are experienced by caregivers themselves.DesignAn umbrella review of systematic reviews was conducted.Data sourcesQuantitative (with or without meta-analyses), qualitative and mixed-methods systematic reviews were included.Eligibility criteriaReviews were considered eligible if they met the following criteria: included primary studies targeting informal (ie, unpaid) caregivers of older people or persons presenting with ageing-related diseases; focused on support interventions and assessed their effectiveness (quantitative reviews) or their implementation and/or lived experience of the target population (qualitative reviews); included physical or mental health-related outcomes of informal caregivers.Data extraction and synthesisA total of 47 reviews were included, covering 619 distinct primary studies. Each potentially eligible review underwent critical appraisal and citation overlap assessment. Data were extracted independently by two reviewers and cross-checked. Quantitative review results were synthesised narratively and presented in tabular format, while qualitative findings were compiled using the mega-aggregation framework synthesis method.ResultsThe evidence regarding the effectiveness of interventions on physical and mental health outcomes was inconclusive. Quantitative reviews were highly discordant, whereas qualitative reviews only reported practical, emotional and relational benefits. Multicomponent and person-centred interventions seemed to yield highest effectiveness and acceptability. Heterogeneity among caregivers, care receivers and care contexts was often overlooked. Important issues related to the low quality of evidence and futile overproduction of similar reviews were identified.ConclusionsLack of robust evidence calls for better intervention research and evaluation practices. It may be warranted to avoid one-size-fits-all approaches to intervention design. Primary care and other existing resources should be leveraged to support interventions, possibly with increasing contributions from the non-profit sector

Abstract [en]

Working carers (WKCs) combine paid work with informal care. Little is known about this important group of carers, which is expected to increase in number due topopulation ageing and economic trends. WKCs are beneficial for society but thecombination of work and care roles has consequences for their social and financialcircumstances as well as their health. This thesis explores the caregiving situation ofWKCs.

Study I was a scoping review of research on the challenges of and solutions for thecombination of paid work and care and the role of technologies in supportingWKCs. Results included a conceptual framework which identified high and/orcompeting demands as a key challenge solved by formal support. Web-based andcommunication technologies were seen to be a potential beneficial solution tosupport WKCs. Nevertheless, barriers existed in some instances, preventing theiroptimal use.

Studies II and III were based on data from a 2018 survey of a stratified randomsample of the Swedish population. Study II described informal care provision andreceived support among Swedish female and male WKCs. Female compared tomale WKCs cared more often alone, with more intensity, experienced care as moredemanding while their ability to work was reduced to a greater extent. Study III determined the caregiving-related factors associated with WKCs’ reducedability to work and experience of caregiving as demanding. A key finding was thatpsychological stress and financial problems due to caregiving increased the odds ofboth experiencing caregiving as demanding and a reduced ability to work, whilefinding caregiving satisfying decreased the odds of both.

Study IV was an interview study of WKCs’ experiences during the COVID-19pandemic. WKCs’ positive experiences included the delivery of support by distancevia digital technologies and more time with the care-recipient. Negative experiencesincluded the fear of becoming sick, new challenges at work, and the cancellation ofhome and community-based services for the care recipient.

This thesis contributes new knowledge on the situation of WKCs in Sweden. Itsfindings have implications for how policy can more appropriately and effectivelyaddress WKCs’ needs and preferences for support and their combination of workand care roles.

Abstract [en]

Adolescent young carers (AYCs) are a sub-group of young carers who carry out significant or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult. They are a potentially vulnerable group of minors because of the risk factors associated with their caring role. AYCs face a critical transition phase from adolescence to adulthood often with a lack of tailored support from service providers. The recently completed European funded ‘ME-WE’ project, which forms the focus of this paper, aimed to change the ‘status quo’ by advancing the situation of AYCs in Europe, via responsive research and knowledge translation actions. This paper outlines the participatory, co-creation approach employed in the project to optimise AYC’s involvement. It describes the ethical framework adopted by the project consortium to ensure the wellbeing of AYCs within all project activities. Ethical issues that arose in the field study work in all six countries are presented, followed by a discussion of the level of success or otherwise of the consortium to address these issues. The paper concludes with lessons learned regarding ethically responsible research with and for AYCs that are likely transferable to other vulnerable research groups and pan-European projects.

Abstract
Aim: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure.
Design: A co- design process built on core concepts and ideas embedded in co-design methodology.
Data sources: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and ap-proval of the final version of the support programme.
Outcomes: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.
Conclusion: Co- design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.
Relevance to clinical practice: Emphasizing equal involvement of end users (e.g. car-ers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning oppor-tunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme

Abstract
Aim: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure.
Design: A co- design process built on core concepts and ideas embedded in co-design methodology.
Data sources: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and ap-proval of the final version of the support programme.
Outcomes: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.
Conclusion: Co- design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.
Relevance to clinical practice: Emphasizing equal involvement of end users (e.g. car-ers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning oppor-tunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme

Antologi

Stora anhörigboken samlar insikter från en bredd av ledande experter inom området anhörigomsorg. Den belyser anhörigas betydelsefulla roll och den belastning de upplever i sina strävanden att tillhanda hålla omsorg, kontinuitet och kärlek när samhällets resurser inte räcker till. Boken lyfter fram riskerna för anhörigas egen hälsa, deras ekonomiska utsatthet och sociala stigmatisering samt den betydande överrepresentationen av kvinnor som vårdare. Genom att belysa vikten av ett mer organiserat samhällsstöd för anhöriga och erkänna deras plats som samhällsbärande grupp, erbjuder boken en djup gående diskussion om en oundviklig aspekt av livet - att vara anhörig.

Stora anhörigboken vänder sig till alla som i sitt nuvarande eller framtida yrke möter personer som är just anhöriga oavsett orsak till anhörigskapet.

Sammanfattning
Syftet med denna studie var att undersöka anhörigkonsulenters erfarenheter av arbetet med
anhörigstöd samt upplevelsen av samverkansprocesser med andra aktörer. Studien gjordes med en kvalitativ ansats där empirin samlades in genom sex semistrukturerade intervjuer med
anhörigkonsulenter i olika kommuner i Sverige. Empirin analyserades och sammanställdes genom
en tematisk analys. Vidare analyserades resultatet i relation till studiens teoretiska utgångspunkter
vilka var det salutogena perspektivet och tillhörande känslan av sammanhang [KASAM] samt
strukturella aspekter av samverkan. Resultatet visar att anhörigkonsulenterna upplever anhörigas
behov som varierande utifrån deras skilda situationer. Tre övergripande behov uppfattas av
anhörigkonsulenterna vilka är ett informationsbehov, behov av nya perspektiv och behov av att
sätta sig själv i fokus. Resultatet visar att anhörigkonsulenterna upplever att de arbetar med ett
individuellt utformat stöd för att möta anhörigas stödbehov men att arbetet görs inom vissa
fastställda ramar. Det finns generellt tre insatser som erbjuds anhöriga vilka är individuella samtal,
gruppsamtal och aktiviteter av olika slag. Några kommuner erbjuder även andra insatser vilket
tyder på att stödet till anhöriga varierar mellan olika kommuner. Anhörigkonsulenterna upplever
samverkan som individberoende men som en stor och viktig del av arbetet, dels för att nå ut till
anhöriga, dels för att implementera anhörigperspektivet internt inom kommunerna.

Abstract

Abstract

Denna rapport har tillkommit för att få en förståelse för hur anhörigstöd bedrivs i
Sjuhäradskommunerna och hur anhörigas situation ser ut. Vi har tagit del av både anhörigasoch anhörigkonsulenternas perspektiv för att belysa anhörigfrågan. Studien är finansierad av
FoU Sjuhärad Välfärd som är ett kompetenscentrum för forskning och utveckling inom
kommunernas välfärdsområden. Ägarparter är Högskolan i Borås, Borås Stad samt
kommunerna Bollebygd, Herrljunga, Mark, Svenljunga, Tranemo, Ulricehamn och Vårgårda.
FoU Sjuhärad vill bidra med kunskap som skapar värde för de som bor i Sjuhäradskommunerna och för de som arbetar inom välfärdsområdet. Vår förhoppning är att rapporten
ger ett sådant bidrag men också att kunskapen sprids och är till nytta för policyskapare,
politiker och tjänstemän med intresse för anhörigas situation och anhörigstöd, i andra
kommuner och/eller på andra myndigheter.

Föräldrarkraften är en informativ bok som är oumbärlig för föräldrar till barn med neuropsykiatriska funktionsvariationer. Författaren förklarar olika diagnoser, vad de innebär och vilka problem som är relaterade till dem.Boken är ett stöd för dig som är förälder och som tvivlar på om du som förälder räcker till och gör rätt. Den kommer hjälpa dig förstå varför du handlar och agerar som du gör samt öka förståelsen för ditt barn.Boken innehåller olika fallbeskrivningar där barn och föräldrar kommer till tals och berättar om sina erfarenheter. Du får också råd och verktyg kring hur du som förälder kan agera och tänka för att stödja ditt barn. Nathalie Hult är legitimerad psykolog och har flerårig erfarenhet inom barn- och ungdomspsykiatrin.

Rapport 9 från projektet ”Barn som anhöriga”, CHESS,
Institutionen för Medicin Solna, Karolinska Institutet, Lnu, Nka

Detta är den nionde rapporten i projektet ”Barn som anhöriga”, som genomförs av CHESS och Institutionen för Medicin Solna, Karolinska Institutet, i samarbete med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar. Rapportens syfte är att belysa de sociala livsvillkoren avseende ekonomi och familj för barn som växer upp med föräldrar som drabbas av fysisk eller psykisk sjukdom eller har missbruksproblem.

Ulrika Harmsen var strax över 40, hade man och tre barn och arbetade som speciallärare när hon ramlade olyckligt på jobbet. Fallskadan orsakade en hjärntrötthet som inte ville gå över. Läkarna var förbryllade och utredning efter utredning gjordes utan att man förstod vad det var för fel. Under tiden var Ulrika sjukskriven och tvingades inreda ett tyst rum hemma där hon kunde återhämta sig efter aktiviteter som tidigare hört till vardagen, som att åka och handla eller hämta barnen i skolan. Men den 15 april 2020 kom beskedet hon aldrig hade väntat sig att få höra: Du har drabbats av Alzheimers sjukdom.

Allt blev svart den dagen och Ulrika sögs in i ett mörker av depression. Fanns det ens någon mening att leva vidare när hon ändå skulle dö, förr snarare än senare? Och samtidigt hade hon en familj och tre fina döttrar som älskade och behövde henne. För dem ville hon kämpa vidare. Men hur får man tillbaka livsglädjen när man vet att sjukdomen bryter ner en och gradvis gör en sämre för varje dag?

Ulrika Harmsen berättar öppet och ärligt om hur det är att få diagnosen alzheimer i ung ålder, om att tvingas berätta det värsta för sina barn och om att hitta redskap i vardagen för att hantera sjukdomen. Det här är historien om att få en dödsdom, men också om att hitta lusten att leva igen.

Prior studies emphasize the value of friends' support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018-2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.

Abstract
Aims and objectives
The study aim was to explore the use of an Intensive Care Unit (ICU) diary within four different ICUs units in Sweden and thereby contribute to practice guidelines regarding the structure, content and use of an ICU diary.
Background
ICU diaries are used to aid psychological recovery among critical care patients, but differences remain in diary writing both within and across countries. Few studies have focused on the combined views and experiences of ICU patients, family members and nursing staff about the use of ICU diaries.
Design
An instrumental multiple case study design was employed.
Methods
Three focus groups interviews were carried out with 8 former patients and their family members (n = 5) from the research settings. Individual interviews were carried out with 2 patients, a family member and a nurse respectively. Observations, field notes, documentary analysis and conversations with nursing staff were also conducted. Consolidated criteria for reporting qualitative research (COREQ) was followed.
Results
The qualitative findings firstly consisted of a matrix and descriptive text of the four ICU contexts
and current practices. This highlighted that there were similarities regarding the aims and objectives of the diaries. However, differences existed across the case study sites about how the ICU diary was developed and implemented. Namely, the use of photographs and when to commence a diary. Second, a thematic analysis of the qualitative data regarding patients’ and family members’ use of the ICU diary, resulted in four themes: i) the diary was used to take in and fully understand the situation; ii) the diary was an opportunity to assimilate warm, personalised and human care; iii) the diary was used to manage existential issues; and iv) the diary was a tool in daily activities.
Conclusions
Analysis of the instrumental case study data led to the identification of core areas for inclusion in ICU diary practice guidelines. Introduction

Socialstyrelsen har regeringens uppdrag att presentera ett förslag som möjliggör en kontinuerlig nationell uppföljning av anhörigperspektivet inom hälso- och sjukvården och omsorgen samt av det stöd som kommuner och regioner erbjuder anhöriga. Uppdraget handlar om att analysera möjligheterna att inhämta resultat på nationell nivå i syfte att följa anhörigperspektivet och stödet till anhöriga samt att ge förslag på mått anpassade för att kunna följa dessa områden. I denna rapport presenteras förslag på uppföljningsområden hämtade ur den nationella anhörigstrategin samt förslag på mått, nyckeltal och indikatorer.

To a great extent, older people in Sweden, often with extensive care needs, are cared for in their own home. Support is often needed from both family and professional caregivers. This study aimed to describe and analyse different aspects of health, functioning and social networks, and how they relate to formal and informal care in the home among older adults. Analyses were performed utilising data from the OCTO-2 study, with a sample of 317 people living in Jönköping County, aged 75, 80, 85 or 90 years, living in their own homes. Data were collected with in-person-testing. Based on receipt of care, the participants were divided into three groups: no care, informal care only, and formal care with or without informal care. Descriptive statistics and multinomial regression analysis were performed to explore the associations between received care and different aspects of health (such as multimorbidity, polypharmacy), social networks (such as loneliness, number of confidants) and functioning (such as managing daily life). The findings demonstrate that the majority of the participants received no care at home (61%). Multimorbidity and polypharmacy were more common among those receiving some kind of care in comparison to those who received no care; moreover, those receiving some kind of care also had difficulties managing daily life and less satisfaction with their social networks. The multinomial logistic regression analyses demonstrated that age, functioning in daily life, perceived general health and satisfaction with the number of confidants were related to receipt of care, but the associations among these factors differed depending on the type of care that was received. The results show the importance of a holistic perspective that includes the older person's experiences when planning home care. The results also highlight the importance of considering social perspectives and relationships in home care rather than focusing only on health factors.

Home-based care is expanding, and we need to know more about what kind of support older adults need and how such support should be designed. One way to gain more knowledge is to study the experiences that underlie a nursing home application. However, older adults in need of nursing homes are often too weak to participate in research. Thus, this study aimed to describe the experiences of close relatives of the daily life of older adults in need of a nursing home. A qualitative approach was used, where fifteen relatives of nursing home applicants in central Sweden were interviewed using a study-specific interview guide. The interviews were analysed using thematic analysis. The findings are presented in one main theme "Being the person who manages a fragile life situation" with three underlying themes: Balancing and fulfilling expectations, striving to achieve a status quo, experiencing a breaking point, a change is inevitable, and waiting and moving into a nursing home, a period of tension. The main theme describes how the participants contributed to managing the older adults' life situation and acted as a representative in contacts with health and social care. They tried to offer support in their daily life but over time experienced a breaking point when ageing in place was no longer sustainable, resulting in a nursing home application. The rationale for a nursing home application was often a combination of the older adult's own wishes and the fact that their relatives felt there was a combined need for extensive care and physical proximity to staff, which cannot be provided in ordinary housing. Sometimes the decision to apply was also based on relatives no longer having the capacity to continue managing an older adult's fragile situation.

Abstract

A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.

Abstract

Abstract

Abstract [sv]

Bakgrund: Sorg är en normal reaktion i samband med närståendes död. Sorg är inteen sjukdom men kan ge besvär som liknar dem som uppkommer vid sjukdom. Om sorgeninte kan hanteras av personen som drabbas av sorg kan den leda till kompliceradsorg och sorgeprocessen förlängs. Sjuksköterskor som arbetar inom vård och omsorgmöter anhöriga som upplever sorg i samband med närstående döende och död ochbehöver ha kunskap och förståelse för hur deras situation kan vara för att kunna geadekvat stöd för anhöriga i sorg.

Syfte: Syftet var att beskriva anhörigas upplevelser av sorg i samband med vuxen närståendesdöd.

Metod: En allmän litteraturöversikt baserad på vetenskapliga artiklar med kvalitativstudiedesign. Vetenskapliga artiklar söktes fram i databaserna Cinahl Complete, Pub-Med och PsycINFO. Artiklarna kvalitetsgranskades utifrån kvalitativa kvalitetskriterieroch analysen av studiernas resultat genomfördes utifrån Fribergs analysmetod för litteraturöversikter.

Resultat: Upplevelsen av sorg delas in i två kategorier och tio underkategorier. En känslomässigbelastning och att känna sig vilsen och oviss med underkategorierna Chockoch oförmåga att minnas, Smärta, Ångest och ledsenhet, Skuld och lättnad, Ensamhetoch saknad, Ovisshet samt Vilsenhet. Omgivningens agerande förvärrar och lindrarsorgen med underkategorierna Att mötas av personer som inte förstår, Att få informationsom ger förståelse samt Att få känslomässigt stöd.

Diskussion: Studiens kvalitet diskuteras utifrån trovärdighetsbegreppen tillförlitlighet,verifierbarhet, pålitlighet och överförbarhet. I resultatdiskussionen diskuteras de trecentrala fynden: upplevelser av skuld, ovisshet och betydelsen av känslomässigt stödvid sorg. Fynden diskuteras i relation till personcentrerad vård och sjuksköterskorsbehov av kunskap för att kunna möta personer i sorg.

Abstract

Background Children of refugees are often exposed to the consequences of parental post-traumatic stress disorder (PTSD), potentially leaving them vulnerable to intergenerational transmission of psychopathology. The present study aimed to determine whether parental PTSD is associated with childhood psychiatric morbidity among children of refugees.
Methods This study is a two-generation nationwide cohort study using the Danish Immigration Services database. We followed up children younger than 18 years with at least one refugee parent until psychiatric contact, end of the study, their 18th birthday, emigration, or death. We excluded children if their parents were diagnosed only with psychiatric diagnoses other than PTSD or if they had received a psychiatric contact before parental PTSD diagnosis.
Information on parental PTSD and offspring psychiatric morbidity was obtained from the Danish Psychiatric Central Research Register. We used Cox proportional hazards regression models to assess the risk of psychiatric contacts among children of refugees with PTSD compared with children of refugees with no psychiatric diagnosis.
Findings Between Jan 1, 1995, and Dec 31, 2015, 102010 refugees obtained residency permission in Denmark and 62 239 biological children of refugees were born in Denmark before Dec 31, 2015. 51793 were eligible and included in the study (median follow-up 7·15 years [IQR 3·37–11·78]); of these, 1307 (2·5%) children had a psychiatric contact. 7486 (14·5%) children of refugees were exposed to parental PTSD. Parental PTSD significantly increased the risk of
psychiatric contact in offspring (hazard ratio 1·49 [95% CI 1·17–1·89] for paternal PTSD, p=0·0011; 1·55 [1·20–2·01] for maternal PTSD, p=0·00084) after adjustment for sociodemographic variables.

I Dina ögon handlar om hur Thomas tidigt anar något annorlunda hos sin dotter. Han söker hjälp i jakten på en lösning hos myndigheter men får istället i flera år kämpa mot det han behöver minst - skuld. Den oförstående omgivningen och bristen på stöd blir till slut övermäktig och det för hans dotter ifrån honom. Trots dotterns frånvarao finns känslorna ständigt närvarande; sorg, ilska och frustration men även stolthet, glädje och hopp. Thomas Nybom är pappa till fyra barn varav Shara är den näst äldsta. Han bor utanför Norrköping och har arbetat med personer med neuropsykiatriska diagnoser i tjugo år och handleder även inom ämnet NP. År 2009 startade han lokalföreningen NP Vision, som är en anhörigförening för personer med neuropsykiatriska diagnoser.

Abstract

Abstract

Objective: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.

Method: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.

Results: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.

Significance of results: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

The purpose of this study was to elucidate conditions at all system levels in a specific health care service to develop practices for identification of children as relatives. An interactive research approach with the intention to create mutual learning between practice and research was used. The participating health care service cared for both clinic in- and outpatients with psychiatric disorders. Health care professionals from different system levels (micro, meso, macro) participated, representing different professions. At the first project meeting, it was obvious that there was no systematic approach to identify children as relatives. At the micro level, activities such as a pilot survey and an open house activity were carried out. At the meso level, it was discussed how to better support collaboration between units. At the management (macro) level, it was decided that all units should appoint at least one child agent, with the aim to increase collaboration throughout the whole health care service. To change focus, in this case from only parents to inclusion of children, is an important challenge faced by health care services when forced to incorporate new policies and regulations. The new regulations contribute to increased complexity in already complex organizations. This study highlights that such challenges are underestimated.

Objectives: Parental death during childhood has been linked to increased mortality and mental health problems in adulthood. School failure may be an important mediator in this trajectory. We investigated the association between parental death before age 15 years and school performance at age 15 to 16 years, taking into account potentially contributing factors such as family socioeconomic position (SEP) and parental substance abuse, mental health problems, and criminality.

Methods: This was a register-based national cohort study of 772,117 subjects born in Sweden between 1973 and 1981. Linear and logistic regression models were used to analyze school performance as mean grades (scale: 1-5; SD: 0.70) and school failure (finished school with incomplete grades). Results are presented as β-coefficients and odds ratios (ORs) with 95% confidence intervals (CIs).

Results: Parental death was associated with lower grades (ORs: -0.21 [95% CI: -0.23 to -0.20] and -0.17 [95% CI: -0.19 to -0.15]) for paternal and maternal deaths, respectively. Adjustment for SEP and parental psychosocial factors weakened the associations, but the results remained statistically significant. Unadjusted ORs of school failure were 2.04 (95% CI: 1.92 to 2.17) and 1.51 (95% CI: 1.35 to 1.69) for paternal and maternal deaths. In fully adjusted models, ORs were 1.40 (95% CI: 1.31 to 1.49) and 1.18 (95% CI: 1.05 to 1.32). The higher crude impact of death due to external causes (ie, accident, violence, suicide) (OR: -0.27 [90% CI: -0.28 to -0.26]), compared with natural deaths (OR: -0.16 [95% CI: -0.17 to -0.15]), was not seen after adjustment for SEP and psychosocial situation of the family.

Conclusions: Parental death during childhood was associated with lower grades and school failure. Much of the effect, especially for deaths by external causes, was associated with socially adverse childhood exposures.

Background: Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer.

Methods: Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz.

Results: Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'.

Conclusion: Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness.

Aim: To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent.

Design: Integrative literature review study.

Methods: Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl.

Results: Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality."

Background: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

Methods: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

Results: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

Conclusion: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

Background: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

Methods: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

Results: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

Conclusion: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

Purpose: To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up.

Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety.

Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively.

Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.

This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

Aim: To examine the extent to which structured action plans, i.e. collaborative individual plans (CIPs), used by professionals within the psychiatric care, substance use treatment services and social services, evaluate if clients have children, and if professionals take actions if clients do have children. According to Swedish law, a CIP should be established when a client is in need of care from more than one branch of the care network. Professionals who meet adult clients have the opportunity to identify children at risk. Including a question in the CIP on whether a client has a child is a good approach to identify children in need of support.Methods: Cross-sectional data from professionals were collected prior to attending a three-day CIP course. A total of 705 individuals (n = 797 invited) responded to the questionnaire.Results: More than 90% reported that they meet clients for whom a CIP should be established, and 52.6% of these (n = 346) were aware of an existing CIP template within their organization. Approximately 30% (n = 203) reported that this template included an item on whether the client has one or more children. Of these, a majority reported ensuring that the children receive adequate care (83.3%, n = 169), and that they follow up on the receipt of such care (62.6%, n = 125).Conclusions: The care network needs to implement CIPs to a higher degree, and CIP templates need to include items about the clients' children to ensure that children at risk are identified and thereby can receive adequate support.

Background: Depending on the definitions used, between 5 and 20 % of all Swedish children grow up with at least one parent suffering from alcohol problems, while 6 % have at least one parent who has received inpatient psychiatric care, conditions that may affect the children negatively. Nine out of ten Swedish municipalities therefore provide support resources, but less than 2 % of these children are reached by such support. Delivering intervention programs via the Internet is a promising strategy. However, web-based programs targeting this at-risk group of children are scarce. We have previously developed a 1.5-h-long web-based self-help program, Alcohol & Coping, which appears to be effective with regards to adolescents' own alcohol consumption. However, there is a need for a more intense program, and therefore we adapted Kopstoring, a comprehensive Dutch web-based psycho-educative prevention program, to fit the Swedish context. The purpose of the program, which in Swedish has been called Grubbel, is to strengthen protective factors, such as coping skills and psychological well-being, prevent the development of psychological disorders, and reduce alcohol consumption.

Methods/design: The aim of the current study is to evaluate the effectiveness of Grubbel, which targets 15-25-year-olds whose parents have substance use problems and/or mental illness. Specific research questions relate to the participants' own coping strategies, mental health status and substance use. The study was initiated in the spring of 2016 and uses a two-armed RCT design. Participants will be recruited via social media and also through existing agencies that provide support to this target group. The assessment will consist of a baseline measurement (t0) and three follow-ups after six (t1), 12 (t2), and 24 months (t3). Measures include YSR, CES-DC, Ladder of Life, Brief COPE, AUDIT-C, and WHOQOL-BREF.

Discussion: Studies have revealed that the majority of children whose parents have substance use or mental health problems are not reached by the existing support. Thus, there is an urgent need to develop, implement, and evaluate novel intervention programs and disseminate successful programs to a broader audience. This study, investigating the effects of a web-based intervention, therefore makes an important contribution to this field of research.

To explore the difficulties parents face when understanding their children's reactions to parental cancer and parents' reactions to their children's perceived needs.

Qualitative interviews with cancer patients and their partners.

Eleven patients and seven partners took part. Their children were aged 1-15 years. Eight patients were mothers and cancer was diagnosed median 28 (7-104) months ago.

Inductive analysis with systematic text condensation.

Parents were groping in the dark when understanding their children's reactions. They observed signs of distress in their children, but often avoided communication about emotional reactions. We suggest parental difficulties in containing own and children's emotions as an important cause for this situation.

Parents lacked relevant support offers for the family as a unit. Identification of children's difficulties cannot be based on parental evaluation alone. We suggest family support as part of standard care for patients with minor children.

An illness or injury sustained by a family member affects all family members. It is consequently important that a child’s need to be involved in a family member’s care is clearly recognized by healthcare professionals. The aim of this study was to describe healthcare professionals’ approaches to children as relatives of a parent being cared for in a clinical setting. A web-based study-specific questionnaire was sent and responded to by 1052 healthcare professionals in Sweden. Data were analysed using descriptive statistics and qualitative analysis. The results show that guidelines and routines are often lacking regarding involving children in the care of a parent. Compared to other areas, psychiatric units seem to have enacted routines and guidelines to a greater extent than other units. The results indicate that structured approaches based on an awareness of the children’s needs as well as a child-friendly environment are vital in family-focused care. These aspects need to be prioritized by managers in order to support children’s needs and promote health and wellbeing for the whole family.

Ort, förlag, år, upplaga, sidor

Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.

Ålder: 6-9 år

Hela familjen står inför nya och stora utmaningar då den allvarligt sjuka Perla får komma hem. Fastän det är jobbigt att sköta lillasyster, vill Jakob delta efter bästa förmåga. Han är väldigt bra på att lugna ner henne, för han kan smeka och sjunga särskilt mjukt. Jakob vill att Perla tas med till skolans viktiga evenemang.– Det stör inte mig fastän de andra aldrig har sett en sådan baby som Perla. Jag kan nog förklara det för dem, säger Jakob. Sommarens värme och dofter omsluter hela familjen, också lilla Perla.

Att berätta för ditt barn om autism Att berätta för ditt barn om autismdiagnosen kan kännas skrämmande. Är det bra för barnet att veta? Hur berättar man det? Bör man informera andra? Boken Att berätta för ditt barn om autism ger dig råd, tips, exempel och material för att kunna ha bra samtal om ditt barns autism.

Doktorsavhandling

Introduction: The loss of a loved one is a distressing life event for family members which often affects psychosocial well-being. Young adults who have lost a parent may be a particularly vulnerable group of bereaved individuals. This age group is often characterized by a certain instability, as the individual has left childhood but has not yet established an adult life, which could further compromise psychosocial well-being after the death of a parent. Young adults who have lost a parent to cancer comprise a sparsely studied group, and increased knowledge about their needs is called for.
Aim: The general aim of this thesis was to explore the psychosocial well-being of family members in bereavement, with a special focus on young adults who have lost a parent to cancer.
Methods: Two different study populations were used to examine the overall aim of this thesis. In Study I, 25 family members who lost a loved one within a palliative care service were interviewed about their supportive interactions with health care staff and their emotional experiences associated with these interactions. The interviews were analyzed with qualitative content analysis. Studies II–IV involved 77 young adults, aged 16–28 years, who had lost a parent to cancer and who participated in a support group within the palliative care context. They responded to a comprehen-sive questionnaire at three time-points within the first 18 months after their parent's death. In Study II, loss- and restoration-oriented bereavement stressors, as well as psychosocial well-being, were analyzed with descriptive statistics. Study III investi-gated longitudinal variations in psychosocial well-being and Study IV examined the relationship between self-esteem and symptoms of anxiety and depression. In both of these studies, descriptive and analytical statistics were used.
Results: Study I showed that: clear information presented in an honest dialogue fosters certainty and security; empathetic and flexible encounters with health care staff promote feelings of warmth and comfort; patient- and family-oriented health care staff gave a sense of value; the atmosphere and physical environment contrib-uted to dignity and harmony; and bereavement support provided feelings of strength. Support groups for parentally bereaved young adults were mentioned as being espe-cially important. Studies II–IV revealed an overall poor psychosocial well-being, for example, many young adults reported symptoms of anxiety and low life satisfaction. However, normal levels of self-esteem and a strong belief in a meaningful future might indicate resilience in grief. Minor improvements in psychosocial well-being were found within the first 18 months after the loss. Higher self-esteem was shown to be associated with less symptoms of anxiety and depression.
Conclusion: The results support the suggestion that young adults who have lost a parent to cancer constitute a specific group in bereavement. The indicated resilience may protect the young adults from long-term problems despite their poor psycho-social well-being. Furthermore, supportive interactions that are perceived as helpful may contribute to the development of good psychosocial well-being.

Sammanfattning:
Nationellt kompetenscentrum anhöriga (Nka) är en samarbetsresurs för att utveckla stödet till anhöriga som vårdar eller stödjer en närstående. Under 2017 togs ett underlag fram för en nationell anhörigstrategi vilket presenterades för socialdepartementet. Strategin har som utgångspunkt att anhöriga ska ha samma möjligheter som andra medborgare ur ett livsloppsperspektiv. Det innebär att anhöriga ska
- ha valfrihet att bestämma om de vill ta på sig en anhörigvårdarroll.
- ha samma möjligheter till utbildning, arbete och social delaktighet oberoende av kön, etnisk tillhörighet, trosuppfattning, funktionsnedsättning, sexuell läggning och ålder.
Som ett led i ytterligare konkretisering av strategin och de åtgärdsområden som forskningen pekar på har fokusgrupper och intervjuer genomförts med anhöriga, personal och beslutsfattare under hösten/vintern 2017–2018. Totalt har 35 anhöriga, ett trettiotal personal (främst länssamordnare för anhörigstöd) och tio beslutsfattare nåtts av studien. De intervjuade har fått diskutera underlaget i grupp eller reflektera över det enskilt, samt komma med förslag på konkreta främst statliga åtgärder för varje åtgärdsområde. Underlaget har därefter reviderats något utifrån resultatet av studien.

BACKGROUND: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers.
METHOD: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence an subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings.
RESULTS: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiverburden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higherlevels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect.LIMITATIONS: Most of the studies included in this review were cross-sectional.
CONCLUSIONS: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.

Background: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child's RT are sparsely described. Objective: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child's RT. Intervention/Methods: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis. Results: The analysis revealed 5 categories summarizing the staff members' experiences. These include the following: experiences of various emotions; care for the child and the child's family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement. Conclusions: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential. Implications for Practice: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

Abstract 
The aim of this review was to describe research related to support interventions for adult family members of people with mental illness and the significance that support may have. The results indicate the importance of flexible and individualized forms of support from both professionals and people with personal experience as a family member of someone with mental illness. In many cases, the intervention studies revealed that family members' burden decreased, their knowledge of the disease and treatment increased, and their ability to cope with the situation was improved. The results highlight the importance of support both from professionals and peers.

Abstract
BACKGROUND: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. METHODS: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. DISCUSSION: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. CONCLUSION: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia

Abstract
Aim: To understand the experience of family members of an older relative who has had a fall which required medical attention.

Background: There is abundant bibliography in caregiving, but little is known about the problems faced by caregivers and how family members cope when their older relative has a fall.

Design: Qualitative study that used a symbolic interactionism perspective.

Methods: Twenty-two people with older relatives, who had had a fall and contacted health services in Spain, participated in the study. Data were obtained via written accounts, focus groups, and semi-structured interviews between February 2014 - December 2015. Analysis was guided by grounded theory procedures.

Results: With the fall, dependency becomes a complex issue for the family. To manage a complex dependency is the core issue that emerges from the data analysis. It depicts family efforts to assist their relative in gaining autonomy after a fall, in the best conditions they can provide. They do this with little guidance and support from healthcare professionals.

Conclusions: Guides and protocols for the care of a fragile older person, particularly after a fall, should not only include care but also support to caregivers. Health professionals and especially nurses need to be aware and respond to the family caregivers needs after a fall. To the fall prevention initiatives already in place, it must be added that those who support family members to cope with the care of an older person who has had a fall.

Sammanfattning
Fallskador hos äldre är ett ökande problem i Sverige som orsakar stort lidande, liksom stora kostnader för samhället. Socialstyrelsen har det övergripande ansvaret för att sprida information om fallrisker och fallprevention till äldre. Nationellt kompetenscenter anhöriga (Nka) har sökt och beviljats medel från Socialdepartementet för utvecklings av en verktygslåda gällande äldres fallprevention. Verktygslådan ska riktas till anhöriga som vårdar eller stöttar äldre i hemmet.
Som ett första steg har en så kallad scopingstudie (hädanefter kallad kunskapsöversikt) genomförts i syfte att få en överblick över tillgänglig forskning och annan litteratur på området anhöriga och äldres fall/fallrisk/fallprevention. Studien har utgått från den modell som utarbetades av Arksey och O'Malley (1) och som består av sex steg med en avslutande konsultation med målgruppen, i detta fall anhöriga.
Resultatet av kunskapsöversikten visar att det finns mycket lite forskning gällande anhöriga och deras syn på och upplevelse av närståendes fall, inte minst ur ett svenskt perspektiv. Totalt identifierades 49 relevanta källor, varav 42 vetenskapliga artiklar, en avhandling, ett dokument med tips och råd samt fem rapporter. Endast en svensk vetenskaplig artikel identifierades. Analys av källorna visade att dessa främst berörde fyra huvudteman; Konsekvenser för anhöriga av närståendes fall, Anhörigas förhållningssätt och strategier, Information, utbildning och stöd till anhöriga gällande fallprevention samt 4) Involvering av anhöriga i äldres fallprevention. De fyra huvudtemana kategoriserades i 15 underkategorier vilka beskrivs i kapitel 3. Ett tydligt resultat av kunskapsöversikten är att behovet av stöd och information till anhöriga, liksom behovet av att involvera dem betonas men att det finns få exempel på att så faktiskt har skett.
För att verifiera resultatet i en svensk kontext genomfördes steg 6 i Arkseys och O'Malleys modell (1) i form av fokusgrupper och intervjuer med totalt 30 anhöriga. De intervjuade bestod av makar och barn till äldre. Resultatet av konsultationen visade att det råder stor överensstämmelse med de internationella studierna. Dock tyder intervjuerna på vissa kulturella skillnader som vore intressant att studera vidare, exempelvis användandet av tvång och begränsningar som förefaller mindre vanligt bland de anhöriga som intervjuats. Istället betonas självständighet och den äldres möjlighet till delaktighet och livskvalitet. Anhöriga ger också några exempel på hur de har fått stöd från kommunen vilket i dessa fall har bidragit till deras egen kunskap och trygghet. Under fokusgrupper och intervjuer behandlades också behovet av information/stöd och den verktygslåda som Nka ska ta fram i samarbete med anhöriga. Exempel på kunskap/behov som anhöriga lyfter är:
- Information om fallrisker i hemmet och utomhus samt tips på vilka åtgärder anhöriga kan göra för att minimera riskerna.
- Information om vad anhöriga bör tänka på och vart de kan vända sig för att få
råd och stöd, exempelvis Apoteket, sjukgymnast, äldresjuksköterska, anhörigkonsulent etc.
- Nationellt nummer för fallpreventiva frågor, gärna kopplat till 1177.

Hur informationen ska förmedlas skiljer sig åt mellan intervjuade makar och barn till äldre, där de äldre anhöriga föredrar muntlig information i hemmet medan yngre är mer benägna att själva söka information på internet. Anhöriga lyfter också behovet av en utbildning om fallprevention för professionella samt material riktat till föreningarna att sprida till sina medlemmar.

Background: Social relationships (i.e.interpersonal relations with individuals or groups) have been shown to have long- and short-term effects on health outcomes including reduced mortality risk and quality of life among cancer patients. Patients with tumors in the central nervous system (CNS) often suffer cognitive, neuropsychological and functional impairments, causing major support needs among this patient group and their loved ones caring for them, here referred to as informal caregivers. Informal caregiving can be a positive experience, but it may also have negative psychosocial and physical implications for the caregiver. Further, the quality of social relations among cancer patients and their informal caregivers may decrease over time as illness progresses. The Swedish Brain Tumor Association has started an initiative whereby patients and their informal caregivers introduced to drawing so-called caremaps, social network diagrams visualizing both their formal and informal relations. The hypothesis is that caremaps can support communication and coordination, and may even contribute to strengthening social relations. The aim of this study is 1) to explore what type of social relations and resources are important for CNS tumor patients and their informal caregivers and 2) to explore how they reason about the potential benefits and risks of using caremaps to map and possibly share their social relations. Methods: Setting: During the fall of 2018 and early spring 2019 patients and informal caregivers who have been introduced to Caremaps through the Swedish Brain Tumor Association will be invited to participate in focus group discussions or individual interviews to reflect on their social support needs and their impressions of the Caremaps tool. We estimate to involve approximately 10-20 participants. Results: We expect to be able to present our preliminary findings from the workshops, interviews and focus group discussions at the ICIC 2019 conference, highlighting experienced needs and challenges, as well as first impressions of using caremaps. Discussion: An increasing incidence and prevalence of CNS tumor patients calls for innovative solutions to secure adequate care and support for both the patients and their informal caregivers. Identifying an individual's informal and formal care resources may provide a context in which to navigate among the existing and potential support. It may also serve to facilitate the assessment and appreciation of patients' dependence on informal care as well as of caregiver burden and thus caregivers' support needs. Contribution: Our findings will contribute with insights about how social relationships can be mapped and supported and how caremaps can be a tool for CNS tumor patients and their informal caregivers in self-management, which has implications for designing services to enhance patient and informal caregiver self-care and well-being. This research project is conducted in collaboration with the Swedish brain tumor patient association, Karolinska Institutet, Karolinska University Hospital and the Regional Cancer Center Stockholm-Gotland.

Avhandling

Bakgrund. När människor är inkluderade i varandras liv påverkar en förändring av livssituationen hos en person även de övriga personerna som står den nära. Det innebär att när en person drabbas av ohälsa eller sjukdom påverkas även personens familj. Familjens upplevelse av den situation som uppstår i samband med ohälsa kan dessutom negativt påverka familjemedlemmarnas medvetenhet om familjens tillgängliga styrkor och resurser, vilket i sin tur kan påverka familjers kamp för att återfå och bibehålla hälsa. Traditionellt sett har vården fokuserat på att erbjuda stöd på personnivå, och främst då till patienter. De senaste decennierna har dock en tendens uppmärksammats till ökad förståelse för att hela familjen behöver inkluderas i omvårdnaden. Att anamma ett familjecentrerat förhållningssätt – det vill säga, att se och möta familjen som en enhet och som ett system – har visat sig ha flera fördelar utifrån såväl patient- och familje- som sjuksköterskeperspektiv. Detta har medfört en efterfrågan på forskning om hur familjecentrerad omvårdnad kan läras ut och implementeras i den kliniska hälso- och sjukvården. Syfte: Det övergripande syftet med avhandlingen är att belysa erfarenheter av stöd från distriktssköterskor/sjuksköterskor till familjer i ordinärt boende, samt att utvärdera implementering av familjecentrerade samtal.

Barn vars förälder dömts till fängelse klarar sig sämre i skolan och har en ökad risk för egen kriminalitet i tonåren. Som unga vuxna har de svårare att etablera sig på arbetsmarknaden, visar en ny IFAU-rapport.

Rapporten är en sammanfattning av IFAU Working paper 2019:24

The frequency of the use of coping behavior by wives of alcoholics was found to be related to their husband's drinking outcome. In general, a high frequency of coping behavior was associated with a poor outcome, but some components of coping behavior were more likely than others to be linked with a poor prognosis.

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.

ett material avsett att ge en fullständigare förståelse för människan, speciellt gravt förståndshandikappade

Argues that the well-documented sex difference in depression may be due to a sex difference in susceptibility, in precipitating factors, or in both. Data from a large mental health survey (2,515 White over-18 residents of 2 cities) were used to study precipitating factors. It was found that women were exposed more often to more of the factors that relate to depression; with a few exceptions, the factors related to depression similarly for men and women. Matching on these factors did not eliminate the sex difference in depression. This suggests that there may be a sex difference in susceptibility. Current theories of depression are incorporated into a sequential model of how learned factors might contribute both to susceptibility and to the sex difference. (14 ref) (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Two studies leading to the development of a short form of the Social Support Questionnaire (SSQ) are reported. In Study 1 three items selected for high correlations with the total score (SSQ3) were administered to 182 university students together with several personality measures. SSQ3 had acceptable test-retest reliability and correlations with personality variables similar to those of the SSQ. Internal reliability was marginal although acceptable for an instrument with so few items. Study 2 employed three sets of data in developing a six-item instrument (SSQ6). The SSQ6 had high internal reliability and correlated highly with the SSQ and similarly to it with personality variables. The research findings accompanying the development of the short form social support measure suggest that perceived social support in adults may be a reflection of early attachment experience.

Increased expectations of positive effects of alcohol have been associated with severity of drinking across a variety of abusing and nonabusing adult populations. Although alcohol expectancies have been examined among high school adolescents, no study has examined expectancies of identified adolescent abusers in treatment. This study investigated whether adolescent alcohol abusers in treatment expect significantly more reinforcement from alcohol than do nonabusing peers and whether expectancies vary as a function of exposure to parental alcohol abuse. The adolescent version of the Alcohol Expectancy Questionnaire (Christiansen, Goldman, & Inn, 1982) was completed by 116 abusing and nonabusing adolescents. Results indicate that adolescent alcohol abusers expect significantly more reinforcement from alcohol than do demographically comparable nonabusing peers. Adolescents with an alcohol-abusing parent reported expecting more cognitive and motor enhancement from drinking than did adolescents without a family history of abuse. Thus, both personal alcohol use and parental alcohol use are related to adolescent alcohol expectancies. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

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)

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed.

Den mänskliga tillvaron är full av påfrestningar – motgångar, krav, konflikter och olika slags problem som måste lösas. Vad är det som gör att en del av oss klarar av svåra påfrestningar med hälsan i behåll – och till och med kanske växer och vidareutvecklas av det? Detta är den fråga Antonovsky ställer. Hans svar är att motståndskraften beror på vår känsla av sammanhang, KASAM (på engelska SOC, Sense of Coherence), dvs den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar. Han diskuterar hur denna känsla byggs upp hos barn och vuxna och på vilket sätt den inverkar på vår hälsa. Han presenterar ett testinstrument för att mäta den och han redogör för olika forskningsresultat som stöder hans tes om dess stora betydelse. Boken gavs ut 1991 i Sverige och har sålt i 40.000 exemplar sedan dess. Den har betytt mycket för vändningen inom medicinsk forskning, från en total koncentration på sjukdomsförloppet och patogenesen till ett studium av friskfaktorerna och salutogenesen.

Stroke is one of the oldest but least understood diseases, and it is one of the major public health problems facing the elderly. Recent epidemiological investigations have found that the incidence of stroke has been underestimated by about 50%, and that the burden of disease is highest in minority populations. Recent clinical and basic neuroscience research indicates that stroke is neither unpredictable nor irreversible. Many risk factors for stroke are readily identifiable, and evidence-based treatment may be used to reduce the likelihood of stroke among those at risk. Rapid diagnosis and evaluation of stroke and transient ischemic attack and their treatment, including surgery, anticoagulation, antiplatelet and other medical therapies, reduce the chance of recurrence. More aggressive treatment of blood pressure, even among patients who are not necessarily hypertensive, may also reduce the risk of future strokes. Once ischemic stroke has occurred, emergent therapy using thrombolysis may significantly reduce disability, even among the elderly. This review presents an update on definitions of stroke and its subtypes, stroke epidemiology, and the results of recent studies of stroke prevention and acute treatment.

Children experiencing difficulties in their peer relations have typically been identified using external sources of information, such as teacher referrals or ratings, sociometric measures, and/or behavioral observations. There is a need to supplement these assessment procedures with self-report measures that assess the degree to which the children themselves feel satisfaction with their peer relationships. In this study, a 16-item self-report measure of loneliness and social dissatisfaction was developed. In surveying 506 third- through sixth-grade children, the measure was found to be internally reliable. More than 10% of children reported feelings of loneliness and social dissatisfaction, and children's feelings of loneliness were significantly related to their sociometric status. The relationship of loneliness and sociometric status to school achievement was also examined.

Objective: The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Methods: Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires. Self-esteem was measured with the Rosenberg Self-Esteem Scale. Symptoms of anxiety and depression were measured with the Hospital Anxiety and Depression Scale. Univariate and multiple linear regression models were used to analyze the associations. Result: Self-esteem was significantly associated with symptoms of anxiety and depression at baseline and at follow-up. Conclusion: This study reveals that self-esteem is a valuable explanatory variable, and that it is associated with both symptoms of anxiety and depression in bereavement. This new knowledge could be used to guide future support to parentally bereaved young adults.

OBJECTIVE: To determine the association between parental mental illness and the risk of injuries among offspring. DESIGN: Retrospective cohort study. SETTING: Swedish population based registers. PARTICIPANTS: 1 542 000 children born in 1996-2011 linked to 893 334 mothers and 873 935 fathers. EXPOSURES: Maternal or paternal mental illness (non-affective psychosis, affective psychosis, alcohol or drug misuse, mood disorders, anxiety and stress related disorders, eating disorders, personality disorders) identified through linkage to inpatient or outpatient healthcare registers. MAIN OUTCOME MEASURES: Risk of injuries (transport injury, fall, burn, drowning and suffocation, poisoning, violence) at ages 0-1, 2-5, 6-9, 10-12, and 13-17 years, comparing children of parents with mental illness and children of parents without mental illness, calculated as the rate difference and rate ratio adjusted for confounders. RESULTS: Children with parental mental illness contributed to 201 670.5 person years of follow-up, while children without parental mental illness contributed to 2 434 161.5 person years. Children of parents with mental illness had higher rates of injuries than children of parents without mental illness (for any injury at age 0-1, these children had an additional 2088 injuries per 100 000 person years; number of injuries for children with and without parental mental illness was 10 235 and 72 723, respectively). At age 0-1, the rate differences ranged from 18 additional transport injuries to 1716 additional fall injuries per 100 000 person years among children with parental mental illness compared with children without parental mental illness. A higher adjusted rate ratio for injuries was observed from birth through adolescence and the risk was highest during the first year of life (adjusted rate ratio at age 0-1 for the overall association between any parental mental illness that has been recorded in the registers and injuries 1.30, 95% confidence interval 1.26 to 1.33). Adjusted rate ratios at age 0-1 ranged from 1.28 (1.24 to 1.32) for fall injuries to 3.54 (2.28 to 5.48) for violence related injuries. Common and serious maternal and paternal mental illness was associated with increased risk of injuries in children, and estimates were slightly higher for common mental disorders. CONCLUSIONS: Parental mental illness is associated with increased risk of injuries among offspring, particularly during the first years of the child's life. Efforts to increase access to parental support for parents with mental illness, and to recognise and treat perinatal mental morbidity in parents in secondary care might prevent child injury.

Aim: To increase understanding of the consequences of growing up with substance-abusing parents, including how this can influence the experience of becoming a parent.

Methods: In-depth interviews were conducted with 19 parents who had participated in an Infant and Toddler Psychiatry Unit intervention programme and who had experienced substance-abusing parents in their family of origin. Directed qualitative content analysis was used to analyse the data.

Results: Analysis of the interview material revealed both a high incidence of parentification and a conspiracy of silence concerning the substance abuse that helped generate symptoms of cognitive dissonance in the children. As parents they experience a high degree of inadequacy, incompetence and stress.

Conclusion: A majority of the children who had grown up with substance-abusing parents responded by taking a parenting role for themselves, their siblings and their parents. These children, often well-behaved and seemingly competent, need to be identified and offered support as they risk developing significant psychological and emotional difficulties that can extend into adulthood. They form an extra sensitive group who may need special support up to and including the time when they become parents themselves. This finding underlines the importance of further research on parenting among those who have grown up with abusive parents.

Despite the evidence of unmet support needs among young people who have lost a parent to cancer, only a few support group initiatives have been reported. This observational prospective study explored the psychosocial well-being of young people who participated in support groups at a Swedish specialist palliative care setting. On three occasions, 29 participants, aged 16-28 years, answered questionnaires covering characteristics of the participants, circumstances of the losses, psychosocial well-being of the young people, and their own assessment of the support groups. The support groups attracted mostly young women who were often unprepared for the loss. The living arrangements differed between younger and older participants; however, the loss-related variables did not differ. Significant positive changes were found regarding a sense of meaning in their future life and life satisfaction. The helpfulness of the group was assessed as high/very high and the group brought a valuable fellowship with others in a similar situation. Universality and beneficial interactions were reported and strengthened psychosocial well-being developed over time. This change, according to the young people themselves, may be attributed to the group support. The findings are useful for planning interventions to support young people in bereavement in order to enhance their psychosocial well-being.

Background: Children of parents with mental illness are a vulnerable group, but their numbers and their exposure to adversity have rarely been examined. We examined the prevalence of children with parents with mental illness in Sweden, trends in prevalence from 2006 to 2016, and these children's exposure to socioeconomic adversity.

Methods: We did a population-based cohort study among all children (aged <18 years) born in Sweden between Jan 1, 1991, and Dec 31, 2011, and their parents, followed up between Jan 1, 2006, and Dec 31, 2016. We included children who were identified in the Total Population Register and linked to their birth parents, excluding adopted children and those with missing information on both birth parents. We used a comprehensive register linkage, Psychiatry Sweden, to follow up for indicators of parental mental illness and socioeconomic adversity. Marginal predictions from a standard logistic regression model were used to estimate age-specific, 3-year period prevalence of parental mental illness and trends in prevalence for 2006-16. Using cross-sectional data on each child, indicators of socioeconomic adversity were compared between children with and without concurrent parental mental illness using logistic regression.

Findings: Of 2 198 289 children born in Sweden between Jan 1, 1991, and Dec 31, 2011, we analysed 2 110 988 children (96·03% of the total population). The overall prevalence of children with diagnosed parental mental illness between 2006 and 2016 was 9·53% (95% CI 9·50-9·57). This prevalence increased with age of the child, from 6·72% (6·65-6·78) of the youngest children (0 to <3 years) to 10·80% (10·73-10·89) in the oldest (15 to <18 years). The prevalence of diagnosed parental mental illness increased from 8·62% (8·54-8·69) in 2006-09 up to 10·95% (10·86-11·03) in 2013-16. Children with any type of parental mental illness had markedly higher risk of socioeconomic adversity, such as living in poorer households or living separately from their parents.

Interpretation: Currently, 11% of all Swedish children have a parent with a mental illness treated within secondary care. These children have markedly higher risk of broad socioeconomic adversity than do other children. There is a need to understand how socioeconomic adversity and parental mental illness influence vulnerability to poor life outcomes in these children.

Funding: European Research Council, National Institute for Health Research, Region Stockholm, and the Swedish Research Council.

Introduction: To estimate the prevalence of children with problem drinking parents in Sweden and the extent to which they have an elevated risk of poor health, social relationships and school situation in comparison with other children.

Methods: Survey with a nationally representative sample of Swedish youth aged 15-16 years (n = 5576) was conducted in 2017. A short version of The Children of Alcoholics Screening Test (CAST-6) was used to identify children with problem drinking parents. Health status, social relations and school situation were measured by well-established measures. Overall prevalences for girls and boys were presented as well as relative risks (RR) of harm for children with problem drinking parents compared with other children.

Results: A total of 13.1% of the sample had at least one problem drinking parent during adolescence according to CAST-6-a higher proportion of girls (15.4%) than boys (10.8%). This group had an elevated risk of poor general health as well psychosomatic problems compared with other children (RR 1.2-1.9). They were also more likely to use medication for depression, sleeping difficulties and anxiety (RR 2.2-2.6). Their social relations were also worse especially with their father (RR 3.1) and they had more problems at school (RR 2.6).

Discussion and conclusions: The risk of problems related to parental drinking goes beyond the most severe cases where parents have been in treatment for their alcohol problem. This is important knowledge since the majority of problem drinkers never seek treatment and the major part of parental problem drinking is found in population samples.

Previous studies have shown that parental death influences health and mortality in bereaved offspring. To date, few studies have examined whether exposure to parental bereavement in childhood is associated with suicidality later in life. The aim of the present research was to investigate whether parental death during childhood influences self-inflicted injuries/poisoning in young adulthood. A national cohort born during 1973-1982 (N = 871,402) was followed prospectively in the National Patient Discharge Register from age 18 to 31-40 years. Cox regression analyses of proportional hazards, with adjustment for socio-demographic confounders and parental psychosocial covariates, were used to test hypotheses regarding parental loss and hospital admission due to self-inflicted injuries/poisoning. Parental deaths were divided into deaths caused by (1) external causes/substance abuse and (2) natural causes. Persons who had lost a parent to an external cause/substance abuse-related death had the highest risk of being admitted to a hospital for a self-inflicted injury/poisoning; HRs 2.03 (1.67-2.46) for maternal death and 2.03 (1.84-2.25) for paternal death, after adjustment for socio-demographic confounders and risk factors among surviving parents. Risks were also increased for parental death due to natural causes, but at a lower level: 1.19 (1.01-1.39) and 1.28 (1.15-1.43), respectively. Losing a father before school age was associated with a higher risk of hospital admission for a self-inflicted injury/poisoning than was loss at an older age for both genders. Maternal loss before school age was associated with a higher risk only for men, particularly maternal death by natural causes (p < 0.01).

Background: Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden.

Design and methods: Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed.

Findings: Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents' behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support.

Conclusions: The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members' access to relevant care and support for themselves.

Personal assistance, since its implementation in 1993, has been shown to provide support for persons with severe functional disabilities in their everyday life, ensuring inclusion in societal roles such as working life. Personal assistance (PA) may also provide support in parenting; however, with the right to PA becoming increasingly questioned in Sweden, parents with disabilities have varying experiences of receiving support for their role as parents. Experiences also differ in regard to how access to a personal assistant is important to their child's daily life. The aim of this article is to shed light on the meaning of PA for parents and children in everyday life, especially when PA is reduced or even withdrawn. Eleven parents who have had or presently have PA were interviewed. The results show that parents describe that PA help them to fullfil their parental roles although the support could be more flexible to the needs of parents and their children. In situations when PA has been denied, children are negatively impacted and some children act by taking on responsibilities for the care of their parent. In conclusion; childrens' perspective of their family life needs to be taken in consideration when assessing the rights to PA.

This paper concerns children's and young people's accounts about the situation when one parent is misusing substances but the other parent is not. Earlier research on the other parent is scarce and fragmented. The aim of the paper is to discuss the role of the other parent from a child perspective. The results are based on qualitative analysis of interviews with 23 children who had one parent who misused substances while the other parent, according to public knowledge, did not. The main finding is that the other parent is a source of support, help and protection to some children, but difficulties may reduce the other parent's ability to protect the children. Moreover, the challenges differ in the situations before and after the parents' separation. The conclusion underlines the importance of taking a family perspective, working with the whole family and seeking solutions that take into account all persons of importance to the children's welfare. It cannot be taken for granted that the other parent is able to protect the children. A careful assessment of the children's living conditions is warranted and that assessment should include listening to the children.

Detta informationsmaterial uppdaterades i maj 2024.
Materialet är framtaget i samarbete med Malin Lövgren

Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Tanken med skriften är att ge stöd till dig som förlorat en bror eller syster i cancer.

Children and adolescents whose parents have mental illness (CAPRI) are a potentially vulnerable group. Previous studies showed that they are more likely to experience adverse mental health and social outcomes. However, studies investigating their physical health outcomes are scarce. Additionally, reliable estimates on the size of this group and their living conditions in contemporary Sweden is lacking. My thesis aimed to establish the prevalence of CAPRI in Sweden and to deepen our understanding of their physical health and living conditions. Five individual studies were conducted using linkage from various Swedish national registers. One of the studies was also conducted using data from English registers

Children and adolescents whose parents have mental illness (CAPRI) are a potentially vulnerable group. Previous studies showed that they are more likely to experience adverse mental health and social outcomes. However, studies investigating their physical health outcomes are scarce. Additionally, reliable estimates on the size of this group and their living conditions in contemporary Sweden is lacking. My thesis aimed to establish the prevalence of CAPRI in Sweden and to deepen our understanding of their physical health and living conditions. Five individual studies were conducted using linkage from various Swedish national registers. One of the studies was also conducted using data from English registers.

Grief following a parent’s suicide has been called ‘the silent grief’: due to a prevailing stigma connected to suicide as a mode of death, the parent cannot be talked about. This silenced or distorted communication complicates grieving youths’ meaning reconstruction centred on the question of why the parent committed suicide – a question inevitably linked to queries of who the deceased parent was, and that ultimately triggers thoughts about who oneself has become in the light of this experience. Previous research has emphasized how vulnerable parentally suicide-bereaved youths are by categorizing them as ‘at risk group’ of social and psychological problems and even suicide. However, there is scant knowledge about how these young mourners perceive and manage their own grief and need for social support – knowledge that is essential from a professional perspective. The aim of this thesis is to use a narrative research approach to investigate what and how young mourners tell of their experiences in a variety of social contexts: research interviews, a theatre play and two chat contexts on the Internet. Since they actively seek to achieve something through their communication with others, mourning youths are seen as storytellers and social actors, rather than passive victims of circumstance. This thesis shows how these young mourners search for a context outside of their immediate daily networks where they can normalize and liberate themselves and their deceased parent from stigmatizing discourses. The possibility of narrating experiences in a de-stigmatizing context supports a renegotiation of how to make sense of the suicide – from a voluntary and selfish act, to an involuntary and desperate act caused by adverse life situations or ‘unbearable pain’ and depression. This knowledge is applicable to encounters with parentally suicide-bereaved youths in a professional context, such as social work practice.

Syftet med översikten är att samla och systematisera aktuell och relevant forskning kring barn
medfrihetsberövade föräldrar för att därigenom bidra till ökad kunskap om och förståelse av deras
situation, reaktioner och behov.

Tre frågor har formulerats:
• Vad innebär det konkret för ett barn att ha en frihetsberövad förälder?
• Vilka konsekvenser och potentiella risker innebär det för ett barn att ha en frihetsberövad
förälder?
• Vilka behov har barnet och vilka hinder och möjligheter finns för barnet att hantera sin situation
på ett konstruktivt sätt utifrån omständigheterna?

I den här rapporten får du en inblick i hur situationen kan se ut för barn och unga som har en förälder eller annan familjemedlem som är eller har varit frihetsberövad. Du får ta del av barn och ungas röster avseende deras rätt till information, stöd och kontakt med frihetsberövad familjemedlem samt deras önskningar och framtidstankar. Utifrån barnens röster, samlad forskning och vår egen kunskap och erfarenhet redogör vi avslutningsvis för rekommendationer för att stärka dessa barns rättigheter.

I den här rapporten redovisar Junis vilken stödverksamhet som landets kommuner erbjuder barn som växer upp med missbruk eller beroende. Vi ger också exempel på människor, forskning och verksamhet som gör skillnad för de här barnen.

Rapporterna går att beställa eller ladda ner
på Junis hemsida

The present study aims to examine the extent to which adolescents of immigrant background experience acculturative stress (i.e., cultural clashes with parents and ethnic victimization in school) in multiple contexts, and the reasons why such stress takes a toll on their psychological functioning and views of themselves. The analytic sample includes adolescents of immigrant background residing in Sweden (N = 423, M_age = 13.19, SD = 0.51). Cluster analysis revealed five distinct groups of adolescents, based on their reports of cultural clashes with parents and ethnic victimization in school: (1) low on both acculturative stressors, (2) average on both acculturative stressors, (3) high on cultural clashes only, (4) high on ethnic victimization only, and (5) high on both acculturative stressors. Mediation analysis showed that adolescents who experienced cultural clashes at home and who were also victimized by their peers in school reported higher levels of feeling in between cultures than adolescents in all the other clusters (except those high on cultural clashes only), and in turn reported higher levels of depressive symptoms and lower levels of self-esteem. The present study highlights the importance of understanding immigrant youth's experiences across multiple contexts simultaneously in order to develop a holistic perspective on their adjustment and integration processes.

Parental psychiatric morbidity related to experiences of war and trauma has been associated with adverse psychological outcomes for children. The aim of this study was to investigate parental post-traumatic stress in relation to psychiatric care utilization among children of refugees with particular attention on the child's own refugee status, sex of both child and parents, and specific psychiatric diagnoses. This was a register study in a population of 16 143 adolescents from refugee families in Stockholm County born 1995-2000 and followed between 2011 and 2017 (11-18 years old). Parental post-traumatic stress, identified in three levels of care, was analysed in relation to child and adolescent psychiatric care use. Cox regression analysis was used to estimate hazard ratios (HR) and 95% confidence intervals (CI), adjusted for duration of residence and demographic and socioeconomic variables. Having a mother with post-traumatic stress was associated with higher psychiatric care utilization, with adjusted HR 2.44 (95% CI 1.90-3.14) among foreign-born refugee children and HR 1.77 (1.33-2.36) among Swedish-born children with refugee parents, with particularly high risks for children with less than five years of residence (HR 4.03; 2.29-7.10) and for diagnoses of anxiety and depression (HR 2.71; 2.11-3.48). Having a father with post-traumatic stress was not associated with increased HRs of psychiatric care utilization. Similar results were seen for boys and girls. Treatment for post-traumatic stress should be made available in refugee reception programmes. These programmes should use a family approach that targets both parents and children.

Introduktion för vikarier och underlag för kvalitetsutveckling i äldreomsorgen.

Boken tar ett samlat grepp om äldreboendet och fungerar utmärkt som en introduktion för vikarier och som underlag för kvalitetsutveckling för chef, legitimerad personal och övriga medarbetare.

Författaren Erland Olsson, specialistsjuksköterska i psykiatri och egen företagare, beskriver på ett enkelt sätt flertalet av de processer som behöver ingå för att den praktiska vården och omsorgen ska fungera. Han lyfter också frågor som värdegrund, bemötande och förhållningssätt i olika situationer.

Med reflektionsfrågor i varje kapitel får du som läser möjlighet att fundera över hur verksamheten fungerar på det egna äldreboendet. Reflektionsfrågorna lämpar sig också väl som underlag för diskussion i en studiecirkel eller i samband med era personalmöten på äldreboendet.

De flesta av oss kommer någon gång i livet i kontakt med äldreomsorgen, antingen utifrån våra egna behov eller som närstående. Ett äldreboende är en komplex verksamhet. Men när engagerade och kunniga medarbetare arbetar i team runt den boende på äldreboendet kan det göra underverk för den boende. Delaktiga boende och närstående kan också bidra till kvaliteten i omsorgen.

Erland Olsson är specialistsjuksköterska i psykiatri och egen företagare som tillhandahåller tjänsten som Medicinskt Ansvarig Sjuksköterska samt kvalitetsutveckling i vården, till kommuner och privata vårdgivare såväl genom stöd och handledning som via digitala produkter.

"Till skillnad från en vara där kvalitet finns i produkten, är kvaliteten i äldreomsorgen en färskvara. Den skapas i nuet, i mötet med den boende och närstående.”

Children living with a parent with a mental illness can face difficulties. Parentalmental illness may influence the parents’ ability to cope with family life, where theparents’ awareness of their illness plays an important role. Family interventionsprovided by psychiatric and children’s social care services can be a way to supportthese children, making them feel less burdened, and improving the relationshipswithin the family. The aim of this thesis was to illuminate how children infamilies with a parent with a mental illness are supported in psychiatric and socialservices, especially by means of family interventions, and how families experiencethe support. Study I explored how professionals in adult psychiatric outpatient servicesdeal with children and families when a parent has a mental illness. The findingsshowed that professionals balanced between establishing, and maintaining,a relationship with the patient and fulfilling the legal obligations towards thepatient’s children. Asking the patient about their children could be experiencedas intrusive, and involving the patient’s family in the treatment could be seen asa dilemma, in relation to the patient. Efforts were made to enhance the familyperspective, and when the patient’s family and children joined the treatment thisrequired flexibility from the professional. Study II examined how professionals in children’s social care services experienceworking with children and families when a parent has a mental illness. The socialworkers’ objective was to identify the needs of the children. No specific attentionwas paid to families with parental mental illness; they were supported in thesame way as other families. When the parental mental illness became difficult tohandle both for the parent and the social worker, the latter had to set the child’sneeds aside in order to support the parent. Interagency collaboration seemed likea successful way to support these families, but difficult to achieve. Study III investigated if patients in psychiatric services that are also parentsof underage children, are provided with child-focused interventions or involvedin interagency collaboration between psychiatric and social services and childand adolescent psychiatry. The findings showed that only 12.9% of the patientsregistered as parents in Psykiatri Skåne had registered children under the ageof 18 years. One fourth of these patients had been provided with child-focusedinterventions in psychiatric service, and 13% of them were involved in interagencycollaboration. If a patient received child-focused interventions from the psychiatricservices, the likelihood of being involved in interagency collaboration was fivetimes greater as compared to patients receiving no child-focused intervention.Study IV explored how parents and their underage children who were supportedwith family interventions experienced these interventions. The results showedthat parents experiencing mental illness were eager to find support in explainingto and talking with their children about their mental illness, although the supportfrom the psychiatric service varied. Both children and other family membersappreciated being invited to family interventions. After such an intervention, theyexperienced the atmosphere in the family as less strained and found it easier tocommunicate with each other about difficulties. Unfortunately, the participatingpartners felt that they were left without support specifically targeted at them. The thesis showed that there is a gap between how professionals deal withquestions concerning these families and their support, and the parents’ and thefamilies’ needs to receive support in handling the parental mental illness in thefamily. The psychiatric and social services need to expand their approach andwork with the whole family, in order to meet the needs of the child and otherfamily members involved.

När äldre inte klarar av att bo hemma längre flyttar de ofta till ett vård-och omsorgs-boende, lever den sista tiden där och är i behov av palliativ vård. Palliativ vård är ett förhållningssätt som kännetecknas av en helhetssyn på människan utifrån individens behov. De som arbetar nära den äldre och den närstående är vård- och omsorgsperso-nalen och det är distriktssköterskan som har det övergripande ansvaret för omvårdna-den. Stöd till den närstående är av största vikt inom den palliativa vården. Syftet med studien var att beskriva vård- och omsorgspersonalens erfarenheter av att uppmärk-samma och stödja närstående till den äldre på vård- och omsorgsboende utifrån ett palliativt förhållningssätt. Datainsamlingarna gjordes i två omgångar, en fokusgrupp-sintervju 2017 och genomförda diskussionsgrupper 2010, analyserades med hjälp av kvalitativ innehållsanalys och tolkades med hjälp av Dosseys "Theory of integral nur-sing". I resultatet framkom kategorierna att skapa trygghet för den närstående, önskan att göra den närstående delaktig och att få kunskap om palliativ vård. Kategorierna utmynnade i temat: I ett palliativt förhållningssätt stöds närstående genom att de får känna trygghet och delaktighet. Slutsatsen är att vård- och omsorgspersonalens in-tention är att stödja de närstående men behöver arbeta mer i ett partnerskap med de närstående för att de ska känna en helhet och därmed trygghet och delaktighet.

Det blir allt fler äldre personer i samhället idag eftersom vi lever längre. Ett större antaläldre personer kan innebära att fler närstående blir involverade i den äldre personenslivssituation och vård. Den personcentrerade omvårdnadsmodellen visar att närståendeär en viktig resurs för den äldre och för den äldres välbefinnande. Idag ska närståendekunna vara ett naturligt inslag i vården av den äldre personen. Sedan år 2009när nya bestämmelsen i Socialtjänstlagen kom, har vården ett ansvar att ge närståendestöd och vägledning. Detta leder till att en dialog mellan vårdpersonal och närståendeär betydande för att främja den äldres hälsa, men också för att främja närståendes delaktighetoch välbefinnande. Syftet med studien var att undersöka närståendes upplevelserav att ha en äldre person vid ett vård- och omsorgsboende. Studien har en kvalitativstudiedesign. Tre fokusgruppsintervjuer och två enskilda intervjuer genomfördesmed sammanlagt 26 närstående till en äldre person på ett vård- och omsorgsboende.Intervjuerna analyserades med en konventionell innehållsanalys. Ett gott bemötandeoch en öppen kommunikation med vårdpersonalen gjorde att de närstående kände sigvälkomna och sedda som en viktig del i vården. Närstående upplevde trygghet då desjälva och den äldre personen kände sig hemmastadda på vård- och omsorgsboendet.Slutsats: Personalen har en betydelsefull roll för närståendes välbefinnande och delaktigheti vården på ett vård- och omsorgsboende.

Den svenska offentliga äldreomsorgen växte starkt från 1950-talet, och nådde sin högsta nivå på 1980-talet, för att därefter minska under 2000-talet. Med hjälp av riksrepresentativa befolkningsundersökningar från 1954 och fram till 2009 studerar vi mönster i äldres hjälpbehov och insatser från familj och offentlig omsorg. Ansvarsförhållandet mellan stat och familj har skiftat över tid, men omsorg från anhöriga och det offentliga överlappar allt mer. De offentliga insatserna minskar samtidigt som allt fler på sikt får hjälp, men mindre och senare i livet. Allt fler äldre har anhöriga, som ger mer omsorg.

Background: Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated.

Aims: To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease.

Design: A qualitative approach with focus group interviews.

Methods: Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis.

Results: The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'.

Conclusion: Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being.

Background: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children's caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person.

Methods: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis.

Results: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin.

Conclusion: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped.

Purpose: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

Methods: The study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services.

Results: Family caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients.

Conclusion: The CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers' experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services.Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use.Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes.Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Background: Next of kin participation in care is a cornerstone of palliative care and is thus important in nursing homes, and outcomes following interventions need to be evaluated using robust methods.

Objective: To use within-group and within-individual analytical approaches to evaluate the participation of next of kin in care following an intervention and to compare the outcome between the intervention and control groups.

Methods: A pre-post intervention/control group study design was used. The educational intervention, directed towards staff members, focused on palliative care. The Next of Kin Participation in Care scale comprises the Communication and Trust subscale and the Collaboration in Care subscale, with nine items each. In total, 203 persons (intervention group: n = 95; control group: n = 108) were included. Three different analytical approaches were used: 1) traditional within-group comparison of raw ordinal scores and linearly transformed interval scores; 2) modern within-individual (person-level) interval score comparisons; 3) comparisons between the intervention group and control group based on individual person-level outcomes.

Results: Within-group comparisons of change revealed no change in any of the groups, whether based on raw or transformed scores. Despite this, significant improvements at the individual level were found in 32.9% of the intervention group and 11.6% of the control group for the total scale (p = 0.0024), in 25% of the intervention group and 10.5% of the control group for the Communication and Trust subscale (p = 0.0018), and in 31.2% of the intervention group and 10.5% of the control group for the Collaboration in Care subscale (p = 0.0016). However, a significant worsening at the individual level in Collaboration in Care was found in 35.1% of the intervention group but only among 8.4% of the control group (p < 0.0005).

Conclusion: The intervention seems to have a positive impact on next of kin participation in care in nursing homes, especially for communication and trust. However, some next of kin reported decreased participation in care after the intervention. Modern individual person-level approaches for the analysis of intervention outcomes revealed individual significant changes beyond traditional group-level comparisons that would otherwise be hidden. The findings are relevant for future outcome studies and may also necessitate a re-evaluation of previous studies that have not used individual person-level comparisons.

One cornerstone of palliative care is improving the family's quality of life (QoL). The principles of palliative care have not been sufficiently applied in nursing homes. The aim of this study was to investigate the experiences of QoL of next of kin of frail older persons in nursing homes after an educational intervention concerning palliative care. This qualitative interview study with 37 next of kin used an abductive design with deductive and inductive content analysis. The deductive analysis confirmed the three themes of QoL from the study before the implementation: (1) orientation to the new life-situation, (2) challenges in the relationship, and (3) the significance of the quality of care in the nursing home. The inductive analysis resulted in the sub-theme "Unspoken palliative care". Being the next of kin of an older person living in a nursing home can be distressing despite round-the-clock care, so staff need to apply a more explicitly palliative care perspective. Future research needs to evaluate the influence of meaning-focused coping on next of kin's QoL and integrate this knowledge in psychosocial interventions. 

Introduction: This study examines whether the use of a communication technology can enhance social connectedness among nursing home residents in Norway. The concept of social connectedness suggest that positive and significant interpersonal relationships can help reduce the risk of loneliness and social isolation among older adults and can be beneficial for both their health and overall well-being. In recent years, technology has been increasingly utilized as a method to overcome physical distances and to keep families connected. Although the use of digital solutions among older people has increased in recent years, few studies have addressed the use and impact of such technologies within a nursing home context.
Methods: A total of 225 residents participated in the study, making it one of the few quantitative studies that examine the use of communication technologies in nursing homes at such a large scale. The study combines two sources of data: (1) survey data collected over a 14-month period, in three different waves, at all public nursing homes in Oslo municipality and (2) a highly detailed weekly datastream from each Komp-device, which provides an objective measure of the frequency of contact between the residents and their families. The two sources of data were combined and analyzed using multiple regression analysis.
Results: The regression analysis revealed a positive and significant relationship between Komp use and increased social satisfaction among the residents. The results indicate that Komp is a feasible communication tool to help nursing home residents maintain relations with their families.
Discussion: The positive response to Komp among the residents suggests that when designed with the user's needs in mind, technology can indeed facilitate meaningful social interactions, even for those with limited technological experience. Such interventions can thus be crucial in bridging the gap between older residents and the outside world, effectively addressing their unique challenges of social isolation and disconnection from the broader community

Introduction: Many people, often older adults, living in long-term care homes (OA-LTCH) became socially isolated during the COVID-19 pandemic due to variable restrictions on in-person visits and challenges associated with using technology for social connectivity. Health providers were key to supporting these OA by providing additional care and facilitating their connections with family using technology such as smartphones and iPads. It is important to learn from these experiences to move forwards from the COVID-19 pandemic with evidence-informed strategies that will better position health providers to foster social engagement for OA-LTCH across a range of contextual situations.

Objective: This exploratory qualitative description study sought to explore health provider experiences in supporting social connectedness between family members and OA-LTCH within the COVID-19 context.

Methods: Qualitative, in-depth semistructured interviews were conducted with 11 health providers.

Results: Using inductive qualitative content analysis study findings were represented by the following themes: (a) changes in provider roles and responsibilities while challenging for health providers did not impact their commitment to supporting OA-LTCH social and emotional health, (b) a predominant focus on OA-LTCH physical well-being with resultant neglect for emotional well-being resulted in collective trauma, and (c) health providers faced multiple challenges in using technology to support social connectivity.

Conclusion: Study findings suggest the need for increased funding for LTC to support activities and initiatives that promote the well-being of health providers and OA living in LTC, the need to prioritize social well-being during outbreak contexts, and more formalized approaches to guide the appropriate use of technology within LTC.

Background and objectives: Government-mandated health and safety restrictions to mitigate the effects of coronavirus disease 2019 (COVID-19) intensified challenges in caring for older adults in long-term care (LTC) without family/care partners. This article describes the experiences of a multidisciplinary research team in implementing an evidence-based intervention for family-centered, team-based, virtual care planning-PIECESTM approach-into clinical practice. We highlight challenges and considerations for implementation science to support care practices for older adults in LTC, their families, and the workforce.

Research design and methods: A qualitative descriptive design was used. Data included meetings with LTC directors and Registered Practical Nurses (i.e., licensed nurse who graduated with a 2-year diploma program that allows them to provide basic nursing care); one-on-one interviews with family/care partners, residents, Registered Practical Nurses, and PIECES mentors; and reflections of the academic team. The Consolidated Framework for Implementation Research provided sensitizing constructs for deductive coding, while an inductive approach also allowed themes to emerge.

Results: Findings highlighted how aspects related to planning, engagement, execution, reflection, and evaluation influenced the implementation process from the perspectives of stakeholders. Involving expert partners on the research team to bridge research and practice, developing relationships from a distance, empowering frontline champions, and adapting to challenging circumstances led to shared commitments for intervention success.

Discussion and implications: Lessons learned include the significance of stakeholder involvement throughout all research activities, the importance of clarity around expectations of all team members, and the consequence of readiness for implementation with respect to circumstances (e.g., COVID-19) and capacity for change.

We assess whether informal care receipt affects the probability of transitioning to a nursing home. Available evidence derives from the US, where nursing home stays are often temporary. Exploiting linked survey and administrative data from the Netherlands, we use the gender mix of children to retrieve exogenous variation in informal care receipt. We find that informal care increases the chance of an admission within a three-year period for individuals with severe functional limitations, and increases the costs incurred on formal home care. For individuals with mild limitations, informal care substantially decreases total care costs, whereas its effect on nursing home admission is unclear. Further, informal care results in lower post-acute care use and hospital care costs, and does not increase mortality. Promoting informal care cannot be expected to systematically result in lower institutionalization rate and care costs, but it may nonetheless induce health benefits for its recipients

Aim: Our aim was to gain insight into how the relatives of family members with dementia have experienced their family members' transition from home to permanent nursing home placement.

Design: Our research was a qualitative case study.

Methods: Inspired by Kvale and Brinkmann's phenomenological-hermeneutic approach, we performed the thematic analysis of semi-structured interviews describing how the relatives of family members with dementia have experienced the dementia trajectory.

Results: Twelve relatives of family members with dementia living in nursing homes agreed to participate. The descriptions of relatives' experiences indicated four primary themes: mismatches between healthcare services and the family members' needs, witnessing the family members' cognitive decline, the effects of the experiences on the relatives' health and well-being and what matters to the relatives during their family members' transition to nursing home. Mismatches between available resources in the municipalities and the family members' healthcare needs were the most distressing experiences, along with the family members' gradual cognitive decline. In response, the relatives stressed individualized support, continuity in follow-up care and regular information-sharing between them and staff members caring for their family members. They also highlighted the importance of facilitating seamless transitions from home to nursing homes.

Beskriver demens på ett sätt som ett litet barn kan förstå. Lovis Anjovis passar för barn 3-6 år.

Lovis Ansjovis farfar bor på en liten ö i skärgården och har ett hjärta lika stort som havet. Men när han fyller år och hela släkten tar båten ut till ön förstår Lovis att något inte är som vanligt.

De vuxna tycker att farfar har blivit vimsig och på kalaset går det mesta fel. Han säger konstiga saker, tårtan blir en katastrof och både farfar och hans glasögon försvinner.

Vad är det egentligen som har hänt?

Lovis Ansjovis och glömskan är den andra boken om sexåriga Lovis. Böckerna är skrivna av Maria Estling Vannestål och Sanna Hellberg, som också har ritat bilderna.

Jenny Eriksson var 10 år när hennes pappa fick en demenssjukdom. Det här är hennes berättelse om hur livet kan bli när hjärnan inte fungerar. Om ångest, utmattningssyndrom och Alzheimers sjukdom. En dag går det inte att äta själv längre men själen fortsätter ändå att dansa disco. Försvinner och stannar kvar är Jennys självbiografiska debutroman.

För dig som har en förälder med demenssjukdom
Intervjuer · Tips · Fakta

Har du en förälder med demenssjukdom och känner dig ensam i din situation? Då är den här boken för dig. Du kommer att inse att du faktiskt inte är så ensam som du kanske tror. I själva verket finns det tusentals tonåringar och unga vuxna som går igenom precis samma sak som du – som inte alltid får rätt hjälp, lätt blir missförstådda av omgivningen och som kanske mår ganska dåligt. Att vara ung och anhörig till någon som har alzheimer eller någon annan typ av demenssjukdom innebär påfrestningar i vardagen som många utomstående inte riktigt förstår, så förmodligen kommer du att känna igen dig i några av bokens berättelser. Andra unga anhöriga, som varit där du är nu, ger värdefulla tips. Många unga anhöriga vittnar om hur svårt de tycker det är att hitta rätt inom vården och omsorgen. Den här boken hjälper dig förhoppningsvis en bit på vägen. Du kan bland annat läsa om vilket stöd du som anhörig kan få, viktiga dokument att ordna med, lagar och regler samt inte minst fakta om de olika demenssjukdomarna. Kunskap är nyckeln till att förstå det som händer din förälder. Dessutom svarar en expertpanel på några vanliga frågor som kan dyka upp. Den här boken kan med fördel också läsas av vård- och omsorgspersonal, skolkuratorer, lärare, tjänstemän, makthavare och andra med inflytande över de förutsättningar som ges en utsatt grupp unga människor. Så här uppfattar de sin situation.
Detta är den verklighet de lever i.

Informal care is a key pillar of long-term care provision across Europe and will likely play an
even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the
personal, psychological, social, economic, and geographic factors that shape caregiving
experiences. Here, we present the baseline cohort of the study and describe its design,
recruitment methods, data collection procedures, measures, and early baseline findings.
The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the
Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based
longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments
conducted separately with caregivers and care recipients. From 14 August 2020 to 31
August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and
primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at
least post-secondary education, and two-thirds were married/partnered. Over half of the
caregivers were employed (53%) and caring for a person with multiple chronic conditions
(56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner
(32%). About three-quarters of care recipient participants were female (77%), not employed
(74%), and had at least post-secondary education (77%), with a median age of 55 years.
Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This
study examining numerous potential influences on caregiving experiences provides an
opportunity to better understand the multidimensional nature of these experiences. Such
data could have implications for developing caregiving services and policies, and for future
informal care research.

Written and informed by national experts, this is the first publication to provide a detailed examination of the development, implementation and implications of carer leave policies and policies in 9 countries across Asia, Oceania, Europe and North America.

Background: The negative effects of informal caregiving are determined by the characteristics of the caregiver-care receiver dyad and the context of care. In this study, we aimed to identify which subgroups of older informal caregivers (1) experience the greatest subjective burden and (2) incur a faster decline in objective health status.

Methods: From a total of 3363 older participants in the Swedish National study on Aging and Care in Kungsholmen (SNAC-K), we identified 629 informal caregivers (19.2%, mean age 69.9 years). Limitations to life and perceived burden were self-reported, and objective health status was quantified using the comprehensive clinical and functional Health Assessment Tool (HAT) score (range: 0-10). Ordered logistic regressions and linear mixed models were used to estimate the associations between caregiving-related exposures and subjective outcomes (cross-sectionally) and objective health trajectories (over 12 years), respectively.

Results: Having a dual role (providing and receiving care simultaneously), caring for a spouse, living in the same household as the care receiver and spending more hours on caregiving were associated with more limitations and burden. In addition, having a dual role (β=-0.12, 95% CI -0.23 to -0.02) and caring for a spouse (β=-0.08, 95% CI -0.14 to -0.02) were associated with a faster HAT score decline. Being female and having a poor social network were associated with an exacerbation of the health decline.

Conclusions: Both the heterogeneity among caregivers and the related contextual factors should be accounted for by policymakers as well as in future research investigating the health impact of informal caregiving.

Socialt arbete med personer med funktionsnedsättning förekommer i form av insatser inom socialtjänst, omsorg, skola, hälso- och sjukvård, habilitering och många verksamheter i civilsamhället.

Socialt och kurativt arbete med personer med funktionsnedsättning innehåller en bredd samtidigt som den bidrar med ett djup för att spegla den komplexitet som professionella möter i socialt arbete. Boken syftar till att ge ett brett perspektiv på det sociala och kurativa arbetet med personer med funktionsnedsättning utifrån ett livsloppsperspektiv.

Boken består av tre delar där den första delen utgår från ett samhällsperspektiv, där etiska och rättsliga aspekter lyfts fram, liksom hälsoaspekter för personer med funktionsnedsättning. Den andra delen utgår från ett individ- och familjeperspektiv med fokus på barnaåren fram till ungdomsåren. Den sista delen berör ung vuxenperiod till åldrandet.

Målgruppen är studenter på socionom-, hälso- och sjukvårdskuratorsprogrammet och på vård- och omsorgsutbildningar, samt yrkesverksamma inom socialt arbete för personer med funktionsnedsättning, till exempel biståndshandläggare, personliga assistenter, skolkuratorer, stödpedagoger, arbetsterapeuter och motsvarande.

A 4-year prospective study was undertaken of the families of 137 newly referred English speaking psychiatric patients with children at home aged under 15 years. The group comprised a representative sample of such patients living in one inner London borough. Teacher questionnaires were obtained yearly for all children of school age in the families, and for age-, sex- and classroom-matched controls. Detailed standardized interviews were undertaken yearly with parent-patients and with their spouses. A comparison was also made with a control group of families in the general population with 10-year-old children. Patients' families differed in terms of a higher rate of psychiatric disorder in spouses and a much higher level of family discord. Both parental mental disorder and marital discord tended to persist over the 4-year period, but persistence of both was much more marked when the parent had a personality disorder. The children of psychiatric patients had an increased rate of persistent emotional/behavioural disturbance, which tended to involve disorders of conduct. The psychiatric risk to the children was greatest in the case of personality disorders associated with high levels of exposure to hostile behaviour. Boys showing temperamental risk features were most vulnerable to the ill-effects associated with parental mental disorder.

A comparative method of studying the biological bases of personality compares human trait dimensions with likely animal models in terms of genetic determination and common biological correlates. The approach is applied to the trait of sensation seeking, which is defined on the human level by a questionnaire, reports of experience, and observations of behavior, and on the animal level by general activity, behavior in novel situations, and certain types of naturalistic behavior in animal colonies. Moderately high genetic determination has been found for human sensation seeking, and marked strain differences in rodents have been found in open-field behavior that may be related to basic differences in brain neurochemistry. Agonistic and sociable behaviors in both animals and humans and the trait measure of sensation seeking in humans have been related to certain common biological correlates such as gonadal hormones, monoamine oxidase (MAO), and augmenting of the cortical evoked potential.

The monoamine systems in the rodent brain are involved in general activity, exploratory behavior, emotionality, socialization, dominance, sexual and consummately behaviors, and intracranial self-stimulation. Preliminary studies have related norepinephrine and enzymes involved in its production and degradation to human sensation seeking. A model is suggested that relates mood, behavioral activity, sociability, and clinical states to activity of the central catecholamine neurotransmitters and to neuroregulators and other transmitters that act in opposite ways on behavior or stabilize activity in the arousal systems. Stimulation and behavioral activity act on the catecholamine systems in a brain–behavior feedback loop. At optimal levels of catecholamine systems activity (CSA) mood is positive and activity and sociability are adaptive. At very low or very high levels of CSA mood is dysphoric, activity is restricted or stereotyped, and the organism is unsocial or aggressively antisocial. Novelty, in the absence of threat, may be rewarding through activation of noradrenergic neurons.

The mental health of 796 Palestinian children living in the occupied West Bank and Gaza Strip was assessed in terms of reported psychological status and behavioral symptoms. Results, interpreted within the context of the 1987 uprising (Intifada), indicate that exposure to political and military violence may be associated with the onset of conduct problems and fears, although active participation in the conflict may enhance self-esteem and shield children from development of psychological symptoms.

The author draws extensively on the published research findings in child health psychology, and also on her own experience of working with pediatric medical and nursing staff. The emphasis throughout her book is on coping, and helping families to cope, with the stresses imposed by chronic childhood illness. Frequent hospital admissions, pain and its evaluation and control, adjustment and sources of support, communication, education and programs for intervention, all of these topics are discussed sensitively and with authority.

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)

Few studies have focused on the child of a parent with cancer. Family systems and cognitive development theories suggest that the mother's illness affects the children and that families take action to help them. This study describes the ways in which school-age children cope with the mother's breast cancer and the ways in which their families help them cope. The results are based on semistructured interviews with 81 children 6-20 years old whose mothers had been diagnosed with breast cancer within the past two-and-a-half years. Interviews were tape-recorded, transcribed, and content analyzed. Eighty-four percent agreement on interrater reliability was achieved using three independent trained coders. Children and families used four types of strategies: acted as though they were in her shoes, carried on business as usual, tapped into group energy, and put her illness on the table. Parents, other family members, the children's friends, and adult friends helped the children. The results suggest ways that clinicians can understand the effect of the mother's breast cancer from the child's perspective and thus facilitate both the child's coping and the family's attempts to help the children.

present a set of indices of disorganization and disorientation in Strange-Situation [M. Ainsworth] behavior that will permit the identification of D [disorganized/disoriented response] patterning by other workers / begin with a review of previous studies reporting difficulties in placing ("forcing") every infant in a given sample into one of the three traditional categories [secure, insecure-avoidant, and insecure-ambivalent/resistant]
discuss (a) the process by which we developed and obtained reliability for the set of classification criteria to be presented, (b) the classification criteria themselves, and (c) some theoretical issues in the modification of classification systems (PsycINFO Database Record (c) 2016 APA, all rights reserved)

The utility of the Center for Epidemiologic Studies Depression Scale for Children (CES-DC), a modified version of the Center for Epidemiologic Studies Depression Scale, was explored in a sample of children, adolescents, and young adults at high or low risk for depression according to their parents' diagnosis. Proband parents were participants in the Yale Family Study of Major Depression who had children between the ages of 6 and 23 years. Diagnostic and self-report information on offspring was collected over two waves, spaced 2 years apart, from 1982 to 1986. Support was obtained for the reliability and validity of the CES-DC as a measure of depressive symptoms, especially for girls and for children and adolescents aged 12-18 years. Children with major depressive disorder or dysthymia, as defined by the Diagnostic and Statistical Manual of Mental Disorders, Third Edition (DSM-III), had elevated scores in comparison with all other respondents. The CES-DC lacked diagnostic specificity; children with a range of current DSM-III diagnoses had elevated scores on the measure. A cutoff point of 15 and above for screening children and adolescents for current major depressive disorder or dysthymia may be optimal. Depressed respondents scoring below this cutoff point (false negatives) showed better social adjustment than true positives; nondepressed respondents scoring above this cutoff point (false positives) showed worse adjustment than true negatives. Factor analysis was used to construct an abbreviated, four-item version of the scale. The abbreviated scale was shown to be useful as a screen.

The impact of parent-caring on the lives of 30 Caucasian women was studied using data from: 1) intensive interviews, 2) participant observations, and 3) the OARS Multidimensional Functional Assessment. Analysis of the qualitative data identified two caregiving modalities: 1) care provision and 2) care management. The social and behavioral precedents and consequences of entering the careprovider or manager role were identified. The costs of caregiving were much greater for providers than managers.

En blandning av fakta, filosofi och poesi. Enkelt med få men väl vägda ord och vackra bilder berättas om början och slutet, och allt däremellan, livet. Att det är lika för allt levande, även om man är en blomma, en insekt, en fågel eller en människa, allas liv har en början och ett slut. Allt har en livtid, kort eller lång. Från 5-6 år.

Administered the revision of the Children's Manifest Anxiety Scale (RCMAS) to 4,972 6–19 yr olds from 13 states representing all geographic regions of the US. Norms are reported for White males, White females, Black males, and Black females separately at each age level for the total anxiety scale, 3 subscales of anxiety, and a lie scale. MANOVA demonstrated performance on the RCMAS to be a complex function of these factors. Reliability was satisfactory for all groups except Black females below the age of 12 yrs. (17 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)

This is an introductory report for the Brief Symptom Inventory (BSI), a brief psychological self-report symptom scale. The BSI was developed from its longer parent instrument, the SCL-90-R, and psychometric evaluation reveals it to be an acceptable short alternative to the complete scale. Both test--retest and internal consistency reliabilities are shown to be very good for the primary symptom dimensions of the BSI, and its correlations with the comparable dimensions of the SCL-90-R are quite high. In terms of validation, high convergence between BSI scales and like dimensions of the MMPI provide good evidence of convergent validity, and factor analytic studies of the internal structure of the scale contribute evidence of construct validity. Several criterion-oriented validity studies have also been completed with this instrument.

Clinical and experimental studies of children of survivors of the Nazi Holocaust are evaluated critically. Methodological inadequacies are identified, questions bearing on the interpretation of results are raised, and suggestions for future research directions are offered.

A master of family therapy, Salvador Minuchin, traces for the first time the minute operations of day-to-day practice. Dr. Minuchin has achieved renown for his theoretical breakthroughs and his success at treatment. Now he explains in close detail those precise and difficult maneuvers that constitute his art. The book thus codifies the method of one of the country's most successful practitioners.

It is believed that 28 million children nationally are affected adversely by parental alcoholism. To help them, we must identify them. A screening tool was developed and tested to identify adolescents experiencing difficulties because of a parents's drinking problem. The single question, "Has the drinking of either parent created any problem for you?", was given in a medical screening inventory at a teenage clinic. This was followed by an eight-question semistructured interview. Of the 37 patients screened, 57% had high interview scores, suggesting that a parent's drinking had created a problem for them. Their substantiating information was consistent with the literature describing the effects of alcoholics on their children. In contrast, those with low or medium scores consistently reported no problem because of a parent's drinking. High scorers had nearly twice as many somatic symptoms and health concerns as those not reporting a problem with parental drinking. Based on the high percentage of adolescents adversely affected by a parental drinking problem and the patients' responsiveness to specific direct questions, this type of semistructured interview may be useful as a teenage intake interview in a variety of settings. Such screening could allow early referral and interventions to treat the family in which there is alcohol abuse, this promoting healthier psychosocial development. This might also decrease the adolescent's risk of abusing alcohol. Such screening may help the physician to place vague, somatic complaints in a more meaningful perspective. Our method is a quick, brief screen for a common but easily overlooked, potentially serious family problem.

It is believed that 28 million children nationally are affected adversely by parental alcoholism. To help them, we must identify them. A screening tool was developed and tested to identify adolescents experiencing difficulties because of a parents's drinking problem. The single question, "Has the drinking of either parent created any problem for you?", was given in a medical screening inventory at a teenage clinic. This was followed by an eight-question semistructured interview. Of the 37 patients screened, 57% had high interview scores, suggesting that a parent's drinking had created a problem for them. Their substantiating information was consistent with the literature describing the effects of alcoholics on their children. In contrast, those with low or medium scores consistently reported no problem because of a parent's drinking. High scorers had nearly twice as many somatic symptoms and health concerns as those not reporting a problem with parental drinking. Based on the high percentage of adolescents adversely affected by a parental drinking problem and the patients' responsiveness to specific direct questions, this type of semistructured interview may be useful as a teenage intake interview in a variety of settings. Such screening could allow early referral and interventions to treat the family in which there is alcohol abuse, this promoting healthier psychosocial development. This might also decrease the adolescent's risk of abusing alcohol. Such screening may help the physician to place vague, somatic complaints in a more meaningful perspective. Our method is a quick, brief screen for a common but easily overlooked, potentially serious family problem.

I propositionen föreslås ändringar i de nuvarande reglerna om vårdnad och umgänge. Ett syfte med de nya reglerna är att stärka barnens rättsliga ställning.
Enligt propositionen bör man på olika sätt främja en ökad användning av gemensam vårdnad. Sålunda skall makar efter en skilsmässa kunna fortsätta att gemensamt utöva vårdnaden om sina barn, ulan att domstolen behöver fatta något beslut. En nyhet är också att ogifta föräldrar som bor tillsammans med sina barn skall kunna få gemensam vårdnad genom en enkel anmälan liU pastorsämbetet.
De nya reglerna innebär vidare att föräldrar kan fråntas vårdnaden om ett barn när de gör sig skyldiga till missbruk eller försummelse vid utövandet av vårdnaden eller i övrigt brister i omsorgen om barnet på ett sätt som medför en beslående fara för barnets hälsa eller utveckling. Föräldrarna kan också i undantagsfall fråntas vårdnaden om ett barn som har rotat sig i ett fosterhem, om det är uppenbart bäst för barnet att vårdnaden flyttas över till fosterföräldrarna.
En utgångspunkt för de nya reglerna om umgänge är att barn har behov av goda kontakter även med en förälder som inte är vårdnadshavare. Ansvaret för alt detta umgängesbehov tillgodoses ligger i första hand på vårdnadsha­varen. En nyhet är att barnet har rätt till umgänge även med andra som står barnet särskilt nära.
De nya reglerna föreslås träda i kraft den 1 januari 1983.

BACKGROUND: Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.
METHODS: We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.
RESULTS: The main theme is "Non-palliative care" - health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.
CONCLUSION: The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.

Abstract:
Treatment and support of people diagnosed with severe mental illness in Sweden takes place in out-patient psychiatric services or municipality services. Most of the responsibility for support in daily life are provided by the close family. One crucial matter is how to support these families. This research project aimed to investigate the Swedish construction with shared responsibility between county psychiatric care and municipality social care for consumers with severe mental illness affects actions in municipalities in relation to family support. Ten representatives from five municipality settings were interviewed. Five semi-structured interviews were analysed using a thematic analysis. The following themes emerged; One overarching theme, "a mismatch of paradigms", and sub-themes: (a) "accentuating differences", (b) "doubts about including the entire family in the same session" and (c) "lack of a uniform family support policy". We conclude that a shared mandate needs a dialogue between psychiatric and municipality services concerning this mismatch.

Abstract
Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregiversexperienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

Abstract:
Objectives: Instruments for evaluating end‐of‐life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end‐of‐life care in Sweden. The VOICES (SF) [Views of Informal Carers – Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member. Methods: This study was performed based on translation and back translation, cross‐cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life‐limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording. Results: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable. Significance of results: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross‐national comparisons between different healthcare places and organisations.

Kapitel i antologi

Alla människor har ett eget apelsinträd. På vissa växer det många apelsiner och på andra bara några stycken. Men varje dag växer det nya. Varje apelsin ger ork att kunna göra olika saker. Som att klä på sig, äta, prata, duscha eller handla. Elinas mamma har inte så många apelsiner på sitt träd. Dom försvann en dag, för att hon orkat för mycket under en lång tid. En bok om utmattningssyndrom. Boken är tänkt som stöd för drabbade barnfamiljer.

Den här rapporten redovisar resultatet av Socialstyrelsens kartläggning av de behov som barn med frihetsberövade föräldrar kan ha samt vilket stöd som finns för dessa barn. Socialstyrelsen har även analyserat om det stöd som finns för barnen motsvarar deras behov och om socialtjänsten har behov av kunskapsstöd om målgruppen.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag. Forskargruppen valde i samråd med Socialstyrelsen ut vilka verksamheter webbenkäten i kartläggningen skulle riktas till. Inom socialtjänsten valdes socialsekreterare och handläggare inom ekonomiskt bistånd respektive LSS. Inom hälso- och sjukvården valdes vårdpersonal inom primärvården. Enkäten har kompletterats med fokusgruppsintervjuer med personal inom primärvård, ekonomiskt bistånd och LSS. Resultaten visar att samtliga undersökta verksamheter använder minderåriga barn och andra anhöriga istället för tolk i vissa situationer. Främst sker det vid oplanerade besök. Det är vanligare att vuxna anhöriga används i stället för en utbildad tolk än minderåriga barn. I de fall då mötet med brukaren eller patienten beskrivs som känsligt eller komplicerat, ser personalen oftast till att tillkalla professionell tolk. Inom primärvården är det dock inte ovanligt att låta vuxna anhöriga översätta även vid planerade besök.

Abstract
PURPOSE:
The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adultsfollowing the loss of a parent to cancer. METHOD: This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire. RESULTS: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction. CONCLUSION: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss

Föräldrar med intellektuell funktionsnedsättning (IF) kan behöva stöd i sitt föräldraskap för att barnet ska få en bra uppväxt. Socialtjänsten behöver kunskap för att kunna göra välgrundade överväganden och för att kunna ge barn och föräldrar adekvata stödinsatser. Barn riskerar att fara illa om de inte uppmärksammas eller om deras föräldrar får för lite stöd för att kunna utveckla sin föräldraförmåga. Barriskerar också att fara illa om de blir placerade och tappar kontakt med sitt ursprung och nätverk. FN:s konvention om barnets rättigheter anger att samhället behöver ge lämpligt stöd till föräldrar som ansvarar för barnets uppfostran och omvårdnad för att garantera och främja de rättigheter som barnet har. Barnet kan inte ses isolerat från sin familj. Ofta är det dock olika delar av kommunen som utreder och ansvarar för stöd i vardagen till vuxna som har en funktionsnedsättning respektive stöd och skydd för barn. Runt dessa familjer behöver kommunens olika förvaltningar arbeta tillsammans för att en helhetssyn ska vara möjlig. Det gäller både i utredningsförfarandet och vid utformning och utförande av stöd.
Syftet med kunskapsstödet är att öka socialtjänstens kunskap och kompetens för att kunna möta familjerna och tillsammans med dem utforma ett stöd.

The general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘digital technology solution’ discourse in local Swedish health and social care policies. The main concern of our analysis is the discursive constructions of older people and their informal carers and how the concept of health is constructed. A discourse analysis was conducted of 61 local policy documents using the ‘What's the Problem Represented to Be’ method. Our analysis revealed that so-called ‘e-health strategies’ were rarely concerned with health. Health was often referred to as an activity and seen as a means to achieve independence among older people. The norm advocated independence, with the responsibility placed upon the older person, supported by digital technology. Informal carers were constructed as a resource within an older person's environment and largely taken for granted. We argue that the digital solution discourse ignores older people's agency and capacities as contributors to society, not least with regards to being providers of informal care

Informal carers are an integral part of care provision in Sweden, with approximately one in five people providing regular help to a family member or friend. Indeed, carers provide most of the care for people with health and/or care needs living at home. However, they are also relatively neglected in policy terms, with large variation in the type and extent of support offered across the country. This chapter outlines the carer leave policies available, highlighting that the current policy landscape does not sufficiently address the needs and preferences of working carers. Nevertheless, there is a growing political will to recognise the situation of carers in Sweden, marked by the launch of the first national carers strategy by the previous government in April 2022.

Background/Objectives: This cross-national study focuses on adolescents who provide care and support to family members or significant others. Current evidence regarding their mental health and solutions to strengthen it is limited and mostly available in a few countries. The aim of this study is to evaluate the results of a primary prevention intervention for improving the mental health and well-being of adolescent young carers (AYCs) aged 15–17 years in six European countries. The intervention was based on a psychoeducational program and tools adapted from the Discoverer, Noticer, Advisor, and Values (DNA-V) model. Methods: We designed a randomized controlled trial with 217 AYCs participating in the study, either in the intervention or control group. Quantitative and qualitative data were collected via questionnaires at baseline, post-intervention, and a 3-month follow up. Results: The results were mixed, as positive improvements in primary (i.e., psychological well-being and skills) and secondary (school/training/work functioning) outcomes were shown by the experimental group but, in most cases, they were not statistically significant. The qualitative data supported positive claims about the intervention and its appropriateness for AYCs. Conclusions: The study implementation during the peak of the COVID-19 pandemic forced the consortium to adapt the design and may have influenced the results. More long-term studies are needed to assess similar mental health programs with this hard-to-reach target group.

Background: Having an infant requiring care in a Neonatal Intensive Care Unit (NICU) is challenging for parents, often the beginning of a journey of stress and worry for parents. Such situations could cause difficulties in problem solving and communication within the family and result in decreased family functioning.
Aim: The overall aim of the thesis was to investigate parents' experiences when their children have needed NICU in the newborn period, and to investigate parents' experiences and effects of a family-centred intervention.
Method: Data was collected through interviews with parents of infants requiring NICU care (I) and six months after the intervention with Family Health Conversations (IV), analysed using thematic analysis (I) and qualitative content analysis (IV). Questionnaire data was collected in conjunction with inclusion (n=147) (II, III), and five (n=113) and eight (n=92) months after inclusion (III). The questionnaire included measures to assess mental health symptoms, bonding, family wellbeing, and family functioning. Quantitative data was analysed with descriptive and inferential statistics (II, III).
Results: The results of study I were presented as two themes: interactions within the family, and interactions between parents and staff. Interpersonal interactions could both facilitate and hinder in the sense of becoming a parent and a family. In study II nearly 40% of the parents reported anxiety symptoms. Mothers reported more mental health issues than non-birthing parents. Depression was associated with bonding difficulties and family wellbeing. In the longitudinally study (III) the intervention trended toward positive effects on mental health, family well-being, and family functioning. However, the estimated effects were not statistically significant. Regardless of the intervention, mental health symptoms decreased over time, whereas family well-being and functioning remained stable. Parents experienced the Family Health Conversations (IV) as an opportunity to co-create a comprehensive picture of what had happened after their child was born.

ABSTRACTSocial service provision in Europe has increasingly incorporated informalcarers. Consequently, these carers are now included within the scope ofall social workers, including care managers. Most support for carers isindirect support, where opportunities for respite are channelledthrough the care receiver’s needs assessment. This approach highlightsthe unique role of care managers providing carer support as theybalance their public task directed towards clients with the concurrentpolicy-driven expectation to support carers. The aim of this article is toexplore how care managers, as street-level bureaucrats, ‘make’ carersupport policy on the ground. Using systematic text condensation of 10qualitative interviews with care managers in Sweden, we present threethemes to understand care managers’ experiences. Care managers work‘Hand-in-hand’ and ‘hands on’ with carers, carers are within, yet outsideone’s scope of work, and there are possibilities and practices towards acarer perspective. Following Lipsky’s dictum that street-level bureaucrats’actions effectively ‘become’ the public policy they carry out, our resultshighlight care managers’ possibilities and challenges in shaping whatdirect and indirect carer support looks like on the ground.

Background: Children whose parents have alcohol use problems are at an increased risk of several negative consequences, such as poor school performance, an earlier onset of substance use, and poor mental health. Many would benefit from support programs, but the figures reveal that only a small proportion is reached by existing support. Digital interventions can provide readily accessible support and potentially reach a large number of children. Research on digital interventions aimed at this target group is scarce. We have developed a novel digital therapist-assisted self-management intervention targeting adolescents whose parents had alcohol use problems. This program aims to strengthen coping behaviors, improve mental health, and decrease alcohol consumption in adolescents.

Objective: This study aims to examine the effectiveness of a novel web-based therapist-assisted self-management intervention for adolescents whose parents have alcohol use problems.

Methods: Participants were recruited on the internet from social media and websites containing health-related information about adolescents. Possible participants were screened using the short version of the Children of Alcoholics Screening Test-6. Eligible participants were randomly allocated to either the intervention group (n=101) or the waitlist control group (n=103), and they were unblinded to the condition. The assessments, all self-assessed, consisted of a baseline and 2 follow-ups after 2 and 6 months. The primary outcome was the Coping With Parents Abuse Questionnaire (CPAQ), and secondary outcomes were the Center for Epidemiological Studies Depression Scale, Alcohol Use Disorders Identification Test (AUDIT-C), and Ladder of Life (LoL).

Results: For the primary outcome, CPAQ, a small but inconclusive treatment effect was observed (Cohen d=-0.05 at both follow-up time points). The intervention group scored 38% and 46% lower than the control group on the continuous part of the AUDIT-C at the 2- and 6-month follow-up, respectively. All other between-group comparisons were inconclusive at either follow-up time point. Adherence was low, as only 24% (24/101) of the participants in the intervention group completed the intervention.

Conclusions: The findings were inconclusive for the primary outcome but demonstrate that a digital therapist-assisted self-management intervention may contribute to a reduction in alcohol consumption. These results highlight the potential for digital interventions to reach a vulnerable, hard-to-reach group of adolescents but underscore the need to develop more engaging support interventions to increase adherence.

Aim: To investigate children's experiences of the intervention Me and my Family. Me and my Family is an intervention, for families with parental substance use problems (SUP) provided by Swedish social services outpatient care, includes eight weekly sessions where family members communicate how the SUP affects the family. Method: Data consists of 17 qualitative interviews with children, 7 to 19 years old. The qualitative data were analysed using a thematic approach, initially inductively and then discussed by adding salutogenic perspective. Results: The results are presented in three themes. Regardless of the children's varying ages, the results indicate that participating in the intervention has helped the family break the taboo surrounding parental substance use and enabled the young participants to communicate with their family members differently. The intervention also contributed to stronger bonds between children and their parents.

Parental suicide in childhood increases the risk of mental ill-health, substance use andpremature mortality, particularly through suicide. Postvention supports tailored to thewell-being and functioning of suicide-bereaved children and their remaining parents are thusof critical importance to counteract negative development. This explorative cross-sectionalstudy seeks clinically relevant knowledge by investigating posttraumatic stress (PTS), sense ofcoherence (SOC) and family functioning among children (n = 22), adolescents (n = 18) andparents (n = 40) before their attendance at a family-based grief support program. The resultsdemonstrate critical health outcomes for children and parents, and in particular for adolescents.Clinically relevant symptoms of PTS were found in 36% of children, 65% of adolescents, and37% of parents. All groups showed lower SOC than the norm. Adolescents reporteddysfunctional family functioning for the dimensions Communication and AffectiveResponsiveness. Psychoeducational and trauma-informed support is recommended wherefamily communication and meaning construction of suicide is given special attention

[Purpose] This study aimed to evaluate the inter-rater reliability of the evaluation scores of activity limitation in the International Classification of Functioning, Disability and Health (ICF) using the "Criteria for Activities and Participations" proposal. [Subjects] The subjects were 10 patients with cerebrovascular disorders living in a support center for people with disabilities. [Methods] Two physical therapists (PT) classified each evaluation item of the Functional Independence Measure (FIM) into corresponding ICF activity codes. Then, a full-time nurse and a part-time PT scored the activity limitations of each subject and calculated the weighted κ of each evaluated item using a flowchart-type questionnaire for the FIM and the scoring criteria shown in the proposal, "Criteria for Activities and Participations" in ICF. [Results] The range of the weighted κ of each item in FIM was 0.44-1.00, and that of ICF was 0.50-1.00. Our results demonstrate high inter-rater reliability for more than 70% of items scored by both evaluations. [Conclusion] The results of the present study suggest that the ICF scores of activity limitations are sufficiently applicable to clinical practice using the proposal, "Criteria for Activities and Participations".

Counselling. Stödsamtal i social arbete. S. Larsson and S. Trygged

This qualitative focus group study describes posttraumatic growth experiences of African American adolescents currently coping with parental breast cancer. Twelve adolescents participated in three focus groups assessing their experiences with parental cancer. Spontaneous accounts of posttraumatic growth were reported by all participants. A content analysis revealed reports in four of the five domains of posttraumatic growth identified by Tedeschi and Calhoun (1996) which included: greater appreciation for life, enhanced interpersonal relationships, increased sense of personal strengths, and changed priorities. An additional domain, change in health behaviors and attitudes, also emerged. These findings add important knowledge to the developing field of research in posttraumatic growth in populations where available research is scarce, especially among adolescents and racial minorities.

Kognitiv beteendeterapi (KBT) är en alltmer efterfrågad behandlingsform. Boken beskriver hur KBT kan tillämpas vid en rad olika psykiatriska diagnoser: separationsångest och paniksyndrom, generaliserat ångestsyndrom, specifi ka fobier, social fobi, tvångssyndrom, depression, beteendestörning och trotssyndrom, ADHD, ätstörningar, tics och Tourettes syndrom samt autism och självskadande beteende. Tillstånden beskrivs utifrån gällande diagnostiska kriterier, därefter visas hur KBT-modellen och beteendeanalysen kan se ut för respektive tillstånd och hur behandlingen kan läggas upp. Till de olika diagnoserna finns kliniska fallvinjetter. Boken avslutas med en översikt av det empiriska stödet för KBT vid de olika psykiska störningarna hos barn och ungdomar. Boken är avsedd som kursbok för all grundutbildning inom psykoterapi med KBT-inriktning. Den är också lämpad för professionellt verksamma behandlare.

Barn till föräldrar med psykisk ohälsa är en eftersatt grupp. Syfet med denna studie är att studera pedagogers utveckling som kompletterande anknytningsperson i relation till en tre årig fortbildning.Fortbildnigen ägde rum samtidigt som pedagogerna arbetade och innehöll teorier om barns utveckling, nämligen anknytningsteori, Affektteori samt Sterns teori om barns självutveckling.En narrativ metod användes och narrativen analyserades i relation till fortbildningens innehåll, teorier om pedagogers lärande och teorier om tidig utveckling.
Resultatet diskuteras utifrån pedagogers arbete med utsatta barn i förskolan, lärarutbildningens innehåll och fortbildning samt samverkan.

Stroke medför en plötslig och påtaglig förändring av livet för den drabbade och för anhöriga. Efter sjukhusvistelsen för-sätts de i en ny livssituation och ställs in-för många nya problem. Eftersom antalet personer som lever efter genomgången stroke ökar, på grund av förbättrad över-levnad, medför det ökade insatser inom vårdens olika grenar, främst kommunala insatser men också ökade krav och för-väntningar på att anhöriga ställer upp som vårdare.Syftet var att öka kunskapen om stroke-patienters och deras anhörigas situation efter utskrivning från sjukhus. Studie-populationen bestod av 390 konsekutiva strokepatienter, 65 år eller äldre, samt anhöriga som gett hjälp och stöd åt pa-tienten.Den prognostiska förmågan hos sjukhus-personal, avseende patientens framtida hälsotillstånd, hjälpbehov samt boende-form, var signifikant bättre än slumpen. Personalen tenderade att vara alltför optimistisk i sina bedömningar. De fakto-rer som påverkade prognosens korrekthet var aktivitetsgrad och ensamboende före insjuknandet samt påverkad kognitiv för-måga och hjälpbehov vid utskrivningen. God uppfattning om prognosen är viktig såväl för patienter och anhöriga som för vårdpersonalen, bland annat i samband med utskrivningsplanering från sjukhuset.Risken för återinsjuknande och död mins-kade kraftigt från cirka 14% tidigt i efter-förloppet till en stabil nivå på 2-5% efter ett halvår. Cirka 2-3% av patienterna fick sjukhusvård vid ett givet tillfälle under det första året. Motsvarande vårdutnyttjande inom primärvården var 10% och i den kommunala äldreomsorgen 65%. Den kommunala vården svarade således för den största vårdinsatsen efter utskriv-ningen.De vanligaste intervjubaserade hälso-problemen under det första året gällde perception, rörlighet och sömn, medan de vanligaste journalbaserade problemen var smärta, inkontinens samt problem med andning och cirkulation. Kognitions-, rörlighets- och trötthetsproblem tende-rade att samvariera, vilket kan utnyttjas för att identifiera svårfångade problem. Nästan samtliga patienter rapporterade problem någon gång under året men få vid ett givet tillfälle. De faktorer som bestämde storleken av anhörigas insatser var patientens kogni-tiva förmåga, släktskap, given kommunal äldrevård, samt patientens kön. De an-hörigas upplevda börda ökade med den givna hjälpinsatsen, om kommunal äldre-vård getts, släktskap, låg kognitiv förmå-ga och patientens ålder. Både informell och formell vård ökade. Slutligen fanns det en påtaglig parallellitet avseende ång-est och depression samt livskvalitet, som innebar att ju mer ansträngd patientens situation var, desto värre var situationen för den anhörige

Boken samlar de kåserier och krönikor som RBU Stockholm publicerat i medlemstidningen Utsikt. Föräldrar till barn med funktionsnedsättningar kommer att känna igen sig i bokens kåserier och krönikor. Man påminns om sina egna upplevelser, skrattar med åt absurda situationer och känner ilskan mot tjänstemän och en oförstående omgivning. Svar på tal levereras!

ALS is a neurodegenerative disease without curative treatment. The knowledge of the relationship between patients and their next of kin with respect to quality of life (QoL) is deficient. The overall aim of this thesis is to describe different perspectives of QoL of patients with ALS and their next of kin, and to describe strengths and hindrances in the manageability of their daily lives. The participants were recruited from Sahlgrenska University Hospital in Gothenburg, Sweden. In the quantitative studies I–III, 35 couples participated. Fourteen patients and thirteen next of kin participated in the qualitative study (IV). Few changes were found over time in studies I and III, but in patients, there was a decreased rating in some of the physical subscales and in general health in the health-related QoL (HRQoL). The ratings in those subscales were worse in patients than in next of kin, even though next of kin also gave a decreased rating in some of the physical and mental subscales. Next of kin estimated individual QoL to be worse than patients did. No changes were found over time in anxiety, depression, or individual QoL. The ratings in discrete pairs were often similar, indicating that if one person felt bad, the other one did also. Even though the pairs gave relatively good ratings of QoL, study II showed that QoL was worse than in a subset of the general population. Study IV found a constant fluctuation between factors that facilitated and hindered the manageability for each individual person, as well as similarities and differences between patients and their next of kin. QoL was worse in our participants compared with the general population and did not change much over time. The similarities and differences between the patients and next of kin show the need to offer them physical, psychosocial, and existential support, both together and individually, to ensure the best possible QoL. The knowledge that the manageability can change from one moment to another makes it necessary to meet the individuals with a wide perspective and to support them in the situation in which they are currently living.

Bipolar disorder has considerable consequences for the daily life and functioning of the person affected and their family. The aim of this study was to describe the experience of living with bipolar disorder from the view of the person affected and their family. A further aim was to analyze the outcomes of educational interventions for persons with the illness and their family members in outpatient mental health care. In Papers I and II, qualitative interviews were conducted with persons diagnosed with bipolar disorder (n=18) and family members (n=17) focusing on their experiences of life with the illness. In Papers III and IV the outcomes of educational interventions for those affected (n=32) and the families (n=34) were followed-up and analyzed. Paper III included a comparative group (n=15) of persons with the illness only receiving standard treatment. Data were collected using a semistructured interview (III) and self-assessment instruments (III-IV) on five occasions, starting before the intervention and ending at the two-year follow-up. Content analysis was applied to the qualitative studies, whereas descriptive and non-parametric statistical methods were used for the quantitative studies. The educational intervention was an existing health care intervention in a unit in outpatient mental health care services consisting of ten group-sessions with different topics related to living with bipolar disorder which the group discussed and reflected on. It is based on the assumption that communication, collaboration and discussion in these groups create interaction that facilitate development of knowledge about and capacity to manage living with the illness. The results of this thesis showed that the whole lives of the family and the member affected were influenced. The process of integrating the illness challenged their pre-understanding, requiring reconsideration of self among the persons affected and confirmation of the correctness of the families' experiences. Uncertainty among persons with the illness concerning their own capacity and the limited life associated with the illness influenced their view of the future. The younger adults avoided planning or hoping for the future, and without hope of improvement it sometimes felt hard to continue. The families were strongly committed to the care for the member with the illness, but felt engaged in a lonely and burdensome struggle that diminished their chances of a normal life of their own. Hope for the future, sufficient social functioning and feeling part of society was prerequisites for a manageable life for these people. The educational interventions gave them opportunity to interact and learn together with mental healthcare professional and other people within a constructive environment. The outcomes of the interventions showed that both persons with bipolar disorder and the family members increased their self-management ability as a result of their developed knowledge and their ability to meet the daily social concerns and stresses related to living with bipolar disorder improved. This thesis contributes increased knowledge concerning what it means to live with bipolar disorder in the long-term and emphasis the importance of educational interventions with a person-centred view for person affected and family members developing their capacity to manage life. The overall support from mental health care has to be further developed and designed to meet all the specific and different needs of those persons and their families. To supplement the promising outcomes of the educational interventions more research is needed concerning increased self-management under different stages of the illness and life.

Abstract
OBJECTIVES:
This article reports on results from a randomized experimental trial of the effects of the Family Bereavement Program (FBP) on multiple measures of grief experienced by parentally bereaved children and adolescents over a 6-year period.
METHOD:
Participants were 244 youths (ages 8-16, mean age = 11.4 years) from 156 families that had experienced the death of a parent. The sample consisted of 53% boys and 47% girls; ethnicity was 67% non-Hispanic White and 33% ethnic minority. Families were randomly assigned to the FBP (N = 135) or a literature control condition (N = 109). Two grief measures, the Texas Revised Inventory of Grief and the Intrusive Grief Thoughts Scale (IGTS) were administered at 4 times over 6 years: pretest, posttest, and 11-month and 6-year follow-ups. A 3rd measure, an adaptation of the Inventory of Traumatic Grief (ITG) was administered only at the 6-year follow-up.
RESULTS:
Compared with the control group, the FBP group showed a greater reduction in their level of problematic grief (IGTS) at posttest and 6-year follow-up and in the percentage at clinical levels of problematic grief at the posttest. The FBP also reduced scores on a dimension of the ITG, Social Detachment/Insecurity, at 6-year follow-up for 3 subgroups: those who experienced lower levels of grief at program entry, older youths, and boys.
CONCLUSION:
These are the first findings from a randomized trial with long-term follow-up of the effects of a program to reduce problematic levels of grief of parentally bereaved youths.
(c) 2010 APA, all rights reserved

Med anhörigglasögon på – så gjorde vi i Göteborg sammanfattar utvärderingen av en samverkansmodell för bättre anhörigstöd.

Kunskapsstödet är en kortversion av Med anhörigglasögon på – utvärdering av en samverkansmodell. Samverkansmodellen rör ett lokalt utvecklingsarbete med och för anhöriga kopplad till teknik och hjälpmedel.

Dunér A. Motives, experiences and strategies of next of kin helping older relatives in the Swedish welfare context: a qualitative study

Int J Soc Welfare 2010: 19: 54–62 © 2008 The Author(s), Journal compilation © 2009 Blackwell Publishing Ltd and the International Journal of Social Welfare.

Next of kin provide the major part of the help given to older people in Sweden, a country where the official goals of formal eldercare are universality and extensive coverage. This qualitative interview study investigates the thoughts and actions of next of kin who provide informal help to older relatives who also receive formal help from the municipal eldercare. Informal help-giving, in the context of Swedish social policy, was connected with a multiplicity of motives, experiences and strategies. The motives for help-giving were moral considerations, emotional attachment and 'out of necessity'. The experiences of next of kin support the idea of ambivalence as a significant feature of informal help-giving. Different strategies were employed, both active and passive in nature, to manage their situation. The study points out the importance of outlining working forms and methods of collaboration for older persons and their informal and formal networks to lessen the ambivalence experienced by help-giving next of kin.

Next of kin provide the major part of the help given to older people in Sweden, a country where the official goals of formal eldercare are universality and extensive coverage. This qualitative interview study investigates the thoughts and actions of next of kin who provide informal help to older relatives who also receive formal help from the municipal eldercare. Informal help-giving, in the context of Swedish social policy, was connected with a multiplicity of motives, experiences and strategies. The motives for help-giving were moral considerations, emotional attachment and 'out of necessity'. The experiences of next of kin support the idea of ambivalence as a significant feature of informal help-giving. Different strategies were employed, both active and passive in nature, to manage their situation. The study points out the importance of outlining working forms and methods of collaboration for older persons and their informal and formal networks to lessen the ambivalence experienced by help-giving next of kin.

Adolescent substance abuse rarely occurs without other psychiatric and developmental problems, but it is often treated and researched as if it can be isolated from comorbid conditions. Few comprehensive interventions are available that effectively address the range of co-occurring problems associated with adolescent substance abuse. This article reviews the clinical interventions and research evidence supporting the use of Multidimensional Family Therapy (MDFT) for adolescents with substance abuse and co-occurring problems. MDFT is uniquely suited to address adolescent substance abuse and related disorders given its comprehensive interventions that systematically target the multiple interacting risk factors underlying many developmental disruptions of adolescence.

The present study examined whether Snoezelen and Stimulus Preference environments have differential effects on disruptive and pro-social behaviors in adults with profound mental retardation and autism. In N=27 adults these target behaviors were recorded for a total of 20 sessions using both multi-sensory rooms. Three comparison groups were created by diagnosis and motor respective linguistic abilities. Each client was exposed to only one multi-sensory room. Results showed that Snoezelen intervention decreased disruptive behaviors only in individuals with autism, while Stimulus Preference increased pro-social behaviors only in participants with profound mental retardation with co-occurring poor motor and linguistic abilities. Furthermore, several trend analyses of the improved behaviors were conducted throughout all sessions toward short and mid term effects of the multi-sensory room applications. These findings support both the prudence of using the Snoezelen room in individuals with developmental disabilities and the importance of using a Stimulus Preference assessment in multi-sensory environments in clients with profound mental retardation.

Qualitative investigations have indicated that music therapy groups may be beneficial for bereaved teenagers. The existing relationship between young people and music serves as a platform for connectedness and emotional expression that is utilised within a therapeutic, support group format. This investigation confirms this suggestion through grounded theory analysis of focus group interviews. Changes in self-perception were not found as a result of participation, however practically significant results were found on adolescent coping. These cannot be generalized because of the small sample size. Grief specific tools are recommended for use in future investigations in order to capture the emotional impact of music therapy grief work with adolescents.

Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009). År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig. I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.

Hur många människor i Sverige använder narkotika och hur ser deras livssituation ut? Dessa två frågor har legat till grund för sju olika studier vars resultat redovisas i den här rapporten. Resultaten från flera av studierna kan forma ett nytt underlag för att underlätta framtida inriktningar och policybeslut. Rapporten visar bland annat oroväckande narkotikavanor hos yngre personer och tydliga könsskillnader i narkotikavanorna i vissa grupper, ofta förknippad med olika levnadsvillkor för män och kvinnor. En uppdelning via preparat i de flesta av undersökningarna har gett mycket värdefull information om olika substansers genomslag i samhället, och bland vilka grupper.

The changes in family burden and participation in care of relatives to both voluntarily and compulsorily admitted patients were investigated as part of a longitudinal study of the quality of the mental health services in a Swedish county performed between 1986 and 1997. The relationship between the relative's mental health and family burden, participation in care and need of own support was also investigated. The results showed similar and high levels of burden and a non-sufficient participation in care in both periods investigated despite the ongoing changes in the delivery of psychiatric services and a change in the compulsory legislation in Sweden during the period. More relatives experienced an own need of care and support from the psychiatric services in the 1997 investigation. Relatives who experienced mental health problems of their own more often experienced other forms of burden, experienced less participation in the patient's treatment and also more often had own needs of care and support. It is concluded that interventions in families where relatives experience mental health problems will be useful, since a well-functioning network around the mentally ill person has shown to reduce relapse.

This study used structural equation modeling to examine the relationship between multiple sources of social support (e.g., partner, family, and friends), optimism, and well-being among mothers of children with ASD. Social support was examined as a mediator and moderator of the optimism-maternal well-being relationship. Moreover, the role of optimism as a mediator of the social support-maternal well-being relationship was also evaluated. Results revealed that family support was associated with increased optimism that, in turn, predicted higher levels of positive maternal outcomes and lower levels of negative maternal outcomes. In addition, partner and friend support were directly associated with maternal outcomes. Implications for the development of interventions directed at increasing the quality of social support networks are discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

OBJECTIVE:
To determine out-of-school activity participation profiles of school-aged children with physical disabilities.
METHODS:
Activity participation profiles were determined by cluster analysing 427 children's responses on multiple dimensions of participation (intensity, location, companionship, enjoyment, preference) in five activity types (recreational, active physical, social, skill-based, self-improvement). Socio-demographic, child, parent, family and environmental predictors of group membership were determined, along with child functioning, socio-demographic, self-concept and social support variables significantly associated with group membership.
RESULTS:
The cluster analysis revealed four groups, labelled Social Participators (a highly social and neighbourhood-focused group), Broad Participators (a group of high participators who enjoy participation), Low Participators (a group with low enjoyment and weak preferences) and Recreational Participators (a group of younger children who participate in recreational activities with family members). The groups showed meaningful differences across a range of socio-demographic, child, parent, family and environmental variables.
CONCLUSIONS:
The findings support an affective and contextual view of participation, indicating the importance of motivational theory and a person-environment approach in understanding the complexity of children's out-of-school activity participation.

Supportive and palliative care services are integral to the provision of comprehensive cancer care (and no cancer service should call itself 'comprehensive' without a comprehensive supportive and palliative care team). All people diagnosed with cancer should have access to supportive care and the one in two people who will have their lives shortened as a result of cancer need to be able to access palliative care. The skill base, competencies and clinical evidence base for these disciplines is shared. Properly resourced and integrated supportive and palliative care services have been shown to deliver improved health outcomes without compromising life expectancy to:
. people with cancer
. their caregivers (while in the role and subsequently), and
. health services that are prepared to adequately invest in these services, with more efficient use of resources.

In order to achieve these improved health outcomes, early identification of people who have more complex needs becomes a responsibility of each member of the clinical cancer care team. Systematic assessment of current and likely future needs is imperative to improve the patient-defined outcomes that are necessary to live well with cancer or to ensure that life goals are met if premature death will occur because of cancer.

SYNOPSIS
Objective
This study examines links between maternal and paternal ADHD symptoms and parenting practices that require inhibition of impulses, sustained attention, and consistency; the role of home chaos in these associations is also assessed.

Design
ADHD symptoms, the level of home chaos, and parenting practices (involvement, inconsistent discipline, supportive and non-supportive responses to children's negative emotions, and positive parenting) were assessed through self-reports of 311 mothers and 149 fathers of middle-childhood children. Child ADHD symptoms were assessed by teachers.

Results
Mothers reported higher home chaos when they or their children had higher levels of ADHD symptoms; for fathers, only their own ADHD symptoms predicted higher levels of home chaos. Mothers' ADHD symptoms were positively associated with inconsistent discipline and non-supportive responses to children's negative emotions, and these associations were mediated by home chaos. Higher levels of fathers' ADHD symptoms predicted more inconsistent discipline, low involvement, and a low level of supportive and a high level of non-supportive responses to children's negative emotions. Home chaos moderated the link between paternal ADHD and inconsistent discipline and mediated the link between paternal ADHD and involvement. Overall, positive aspects of parenting, and those that require attention and ability to control one's impulses, may be compromised in fathers with high levels of ADHD symptoms.

Conclusions
Effectiveness of specific parenting practices for both mothers and fathers may be compromised in parents with ADHD symptoms. In certain cases, parental ADHD symptoms translate into ineffective parenting through disorganized homes.

OBJECTIVE: Mutual support within the family is of great importance to maintain
its proper functioning. The study aim, which was based on a family system
approach, was to evaluate which variables are associated with patients' sense of
support within the family in the palliative care context.
METHODS: We recruited 174 adult patients (65% of those eligible) from six
palliative home care units, who had non-curable disease with an expected
short-term survival, such as disseminated cancer or non-malignant diagnosis. The
relationship between the endpoint and individual factors were evaluated in a
stepwise model-building procedure using generalised linear model (ordinal
multinomial distribution and logit link).
RESULTS: The respondents' ratings of their sense of support within the family
ranged from 1 (never) to 6 (always), with a mean value of 5.2 (standard deviation
1.06). Patients who less frequently sensed family support experienced more often
stress, worry about their private economy, lower self-efficacy, lower sense of
security with palliative care provided (lower ratings on subscales of care
interaction, mastery and prevailed own identity), more often anxiety, less often
perceived general well-being for closest ones and less often sense of support
from more distant family members. In the model building, three variables were
selected to predict the patients' sense of support within the family.
CONCLUSIONS: The dying patients' sense of support within the family related to
several factors, and these may help the palliative care teams to identify
patients at risk and to alleviate suffering, for example, through supporting the
closest family members.

OBJECTIVE:
Recent research suggests that not only parental psychopathology, but also parenting practices, have a role to play in the development of child posttraumatic stress symptoms (PTSS) following a natural disaster. The current study aimed to investigate the relationship between parents' perceptions of their parenting in the aftermath of a natural disaster, and child PTSS.

METHODS:
A cross-sectional design was used to explore the associations among child PTSS, parents' perceptions of altered (more anxious) parenting, and parental disaster-related distress (altered cognitions and behaviors) in 874 elementary school children (ages 8-12 years) and their parents following a severe storm of cyclonic proportions. With parental consent, school-based screening was conducted in impacted communities 3 months after the storm. Children completed a screening questionnaire consisting of the Child Trauma Screening Questionnaire (CTSQ; used for identifying children at risk for posttraumatic stress disorder [PTSD]), as well as a range of questions assessing disaster exposure and threat perception. Parents completed questions relating to their perceptions of changes in their parenting since the storm, as well as two items relating to their own disaster-related distress.

RESULTS:
Independent of other significant associations with child PTSS (such as age, gender, and disaster exposure), a high level of parent-perceived altered parenting appeared to put children at increased risk for PTSS 3 months after the disaster. However, when the sample was stratified for the presence or absence of altered parent cognitions and behaviors following the storm, altered parenting was found to have a unique relationship with child PTSS only when parents reported altered disaster-related cognitions and behaviors.

CONCLUSIONS:
When parents report disaster-related cognitions and behaviors, their perception of altered parenting practices (becoming more protective, less granting of autonomy, and communicating a sense of current danger) is associated with child PTSS. Although it is not possible to draw conclusions about the direction of these relationships, this study identifies parenting practices that may constitute important targets for intervention.

Although excellent data exist on the overall prevalence of childhood exposure to intimate partner violence (IPV), there is less information available on the specific patterns of IPV exposure in childhood and how they influence adult mental health. The current study examines 703 Swedish adults who reported exposure to IPV in childhood. Participants were part of a large national study on violence exposure. They provided an extensive history of their exposure to IPV and maltreatment experiences during childhood via electronically administered questionnaires. Mean comparison and multivariate regression methods were employed to assess differences in violence severity by reported perpetration pattern (mother-only, father-only, bidirectional or other), the association between violence severity and environmental context, and the contribution of these characteristics to adult mental health outcomes. Overall, violence perpetrated in public and by fathers was more severe and was related to poorer mental health outcomes in adulthood for child witnesses. These findings provide important insight into possible clinical "flags" for identifying children at high risk for exposure to IPV and abuse in the home.

Under 2011 infördes förändringar i lagstiftningen för personer med
funktionsnedsättning i syfte att förbättra förutsättningarna för kvalitet och trygghet för de som har personlig assistans.

Denna rapport är en redovisning av resultatet från inspektioner genomförda
våren 2013 av 50 enskilda assistansanordnare som hade tillstånd att bedriva
assistans för barn. Syftet med tillsynen var att granska om insatserna för barnen var av god kvalitet och rättssäkra samt om barnperspektivet beaktades i verksamheterna. Fokus under inspektionerna låg på ledningssystemet för det systematiska kvalitetsarbetet, den sociala dokumentationen, möjligheterna till kompetensutveckling för assistenterna, samt barnens möjligheter till delaktighet, att komma till tals och att få sina behov av fysisk och psykisk utveckling tillgodosedda. Redovisningen baseras på intervjuer med verksamhetsansvariga, dokumentationsgranskning och samtal med barn.

Slutsatser och bedömningar
Det stora flertalet assistansanordnare hade ett ledningssystem, men det fanns behov av förbättringar.
Nästan samtliga anordnare hade kompetensutveckling för sina assistenter, men den varierade stort i omfattning. Eftersom det saknas formella kompetenskrav för assistenter ställer det speciella krav på anordnaren att säkerställa att barnet genom sina assistenter får insatser av god kvalitet.
Stora brister i dokumentationen uppmärksammades när det gällde såväl hantering av handlingar som innehåll - brister som kan äventyra barnens rättssäkerhet. Brister i dokumentationen gällde också barnens genomförandeplaner, vilket påverkar barnens möjligheter till delaktighet.
Drygt hälften av anordnarna uppgav att de på olika sätt och i olika omfattning beaktade barnperspektivet, barns behov och/eller barns bästa. Det var bara hos en mindre andel av anordnarna som barnperspektivet uttalat ingick i ledningssystemet. Detta försvårar samtidigt för anordnare att på ett systematiskt sätt säkra att barnperspektivet genomsyrar hela verksamheten.
Möjligheten till frigörelse och utveckling för barn med egna föräldrar eller närstående som personliga assistenter bör uppmärksammas i tillsynen.
Samtal har förts med för få barn för att kunna säga något ur barnens perspektiv om hur personlig assistans för barn fungerar generellt eller hos enskilda assistansanordnare. Men i de samtal som genomförts framkommer en positiv bild av barnens upplevelse av sin assistans.
För att förbättra möjligheterna att ta del av synpunkter från barn med personlig assistans behöver tillsynen utveckla metoder för samtal med barn, men också avseende alternativa sätt att inhämta information om barnen.

Under 2011 infördes förändringar i lagstiftningen för personer med
funktionsnedsättning i syfte att förbättra förutsättningarna för kvalitet och trygghet för de som har personlig assistans.

Denna rapport är en redovisning av resultatet från inspektioner genomförda
våren 2013 av 50 enskilda assistansanordnare som hade tillstånd att bedriva
assistans för barn. Syftet med tillsynen var att granska om insatserna för barnen var av god kvalitet och rättssäkra samt om barnperspektivet beaktades i verksamheterna. Fokus under inspektionerna låg på ledningssystemet för det systematiska kvalitetsarbetet, den sociala dokumentationen, möjligheterna till kompetensutveckling för assistenterna, samt barnens möjligheter till delaktighet, att komma till tals och att få sina behov av fysisk och psykisk utveckling tillgodosedda. Redovisningen baseras på intervjuer med verksamhetsansvariga, dokumentationsgranskning och samtal med barn.

Slutsatser och bedömningar
Det stora flertalet assistansanordnare hade ett ledningssystem, men det fanns behov av förbättringar.
Nästan samtliga anordnare hade kompetensutveckling för sina assistenter, men den varierade stort i omfattning. Eftersom det saknas formella kompetenskrav för assistenter ställer det speciella krav på anordnaren att säkerställa att barnet genom sina assistenter får insatser av god kvalitet.
Stora brister i dokumentationen uppmärksammades när det gällde såväl hantering av handlingar som innehåll - brister som kan äventyra barnens rättssäkerhet. Brister i dokumentationen gällde också barnens genomförandeplaner, vilket påverkar barnens möjligheter till delaktighet.
Drygt hälften av anordnarna uppgav att de på olika sätt och i olika omfattning beaktade barnperspektivet, barns behov och/eller barns bästa. Det var bara hos en mindre andel av anordnarna som barnperspektivet uttalat ingick i ledningssystemet. Detta försvårar samtidigt för anordnare att på ett systematiskt sätt säkra att barnperspektivet genomsyrar hela verksamheten.
Möjligheten till frigörelse och utveckling för barn med egna föräldrar eller närstående som personliga assistenter bör uppmärksammas i tillsynen.
Samtal har förts med för få barn för att kunna säga något ur barnens perspektiv om hur personlig assistans för barn fungerar generellt eller hos enskilda assistansanordnare. Men i de samtal som genomförts framkommer en positiv bild av barnens upplevelse av sin assistans.
För att förbättra möjligheterna att ta del av synpunkter från barn med personlig assistans behöver tillsynen utveckla metoder för samtal med barn, men också avseende alternativa sätt att inhämta information om barnen.

This study examined potential discriminators of groups of older adults showing different patterns of stability or change in loneliness over 5 years: those who became lonely, overcame loneliness, were persistently lonely, and were persistently not lonely. Discriminant function analysis results showed that the persistently lonely, compared with the persistently not lonely, were more often living alone, widowed, and experiencing poorer health and perceived control. Moreover, changes in living arrangements and perceived control predicted loneliness change. In conclusion, perceiving that one is able to meet social needs is a predictor of loneliness and loneliness change and appears to be more important than people's friendships. Because the predictors were better able to predict entry into loneliness, results point to the promise of prevention approaches to loneliness interventions.

Abstract
AIM:
To examine prevalence rates of child physical abuse perpetrated by a parent/caretaker, abuse characteristics and the extent of disclosures.
METHODS:
A population-based survey was carried out in 2008 amongst all the pupils in three different grades (n = 8494) in schools in Södermanland County, Sweden. The pupils were asked about their exposure to violence and their experiences of parental intimate-partner violence. Data were analysed with bi- and multivariate models and a comparison between means of accumulating risk factors between three groups were performed.
RESULTS:
A total of 15.2% of the children reported that they had been hit. There were strong associations between abuse and risk factors and there was a dose-response relationship between risks and reported abuse. It was shown that children who reported parental intimate-partner violence were at a considerably higher risk for abuse than other children and that only 7% of the children exposed to violence had disclosed this to authorities.
CONCLUSION:
Even though child abuse in Sweden has decreased markedly during the last 40 years, violence against children is still a considerable problem. It is a challenge to develop methods of assessment and interventions that will ensure that the violence and its underlying causes are directly addressed.

Många äldre lider av psykisk ohälsa. Vid 75 års ålder beräknas 15–25 procent
lida av psykisk ohälsa, men alla dessa har inte en psykiatrisk diagnos. I
dag återfinns äldre personer med psykiatrisk problematik framför allt inom
primärvården och äldreomsorgen, utan tillgång till specialist-psykiatrins
kompetens.
En förutsättning för god vård och omsorg för äldre personer med psykisk
ohälsa är att personal inom socialtjänsten och den kommunala hälso- och
sjukvården har kompetens för att upptäcka tecken på psykisk ohälsa hos
dessa personer och att ge dem rätt stöd i det dagliga livet. Många äldre personer
träffar bara läkare inom primärvården någon enstaka gång per år och
då under en ganska kort tid per tillfälle. Distriktssköterskor och personal
inom hemtjänst och särskilt boende kan däremot dagligen ha kontakt med
multisjuka äldre, och har därmed stora möjligheter att upptäcka om en äldre
person har eller riskerar att få psykisk ohälsa.
Andra viktiga förutsättningar för en god vård och omsorg för äldre personer
med psykisk ohälsa är ett systematiskt arbete för en evidensbaserad
praktik, inklusive uppföljning och utvärdering. En värdegrund byggd på
respekt för den enskilde brukaren och dennes upplevelser hör också till förutsättningarna
för en god vård och omsorg, liksom samverkan mellan verksamheter
och professioner utifrån en helhetssyn på den enskilda äldre personens
situation och behov.
I denna vägledning ges exempel på tecken på psykisk ohälsa som kan
signalera problem av varierande allvarlighetsgrad.
Många äldre personer behöver hjälp och stöd för att kompensera konsekvenserna
av en psykisk ohälsa, och det behovet utgör ofta grunden för de insatser
som en kommun erbjuder målgruppen. De vanligaste insatserna, utöver hemtjänst
och särskilt boende, är ett boende i bostad med särskild service enligt
LSS eller boendestöd i det ordinära boendet. Det är viktigt att dessa insatser
utformas med insikt om att många som tar del av dem har psykisk ohälsa, så att
deras behov och möjligheter inte förbises.
För att möta äldre personer som har eller riskerar psykisk ohälsa är det
viktigt att inte bara ge insatser utan även ge möjlighet att stärka den egna
förmågan att motverka psykisk ohälsa. Ett väl utvecklat relationsarbete i
förhållande till äldre personer med psykisk ohälsa och deras anhöriga är
också en viktig del av en god vård och omsorg.

Abstract
PURPOSE:
To evaluate a person-centered intervention, directed to siblings with a brother or sister newly diagnosed with cancer that combines education, learning and reflection about cancer.
METHOD:
Qualitative methods with pre- and post-intervention semi-structured interviews were conducted. Fourteen siblings aged 9-22 years participated. A qualitative content analysis was carried out.
RESULTS:
The result comprises of five themes: 'grasping for knowledge about cancer, 'thinking for hours and having nightmares', 'experiencing physical pain', 'being emotional in several ways', 'waiting for a normal, good life despite the uncertain future". Pre-intervention; a low level of knowledge of cancer treatments and its side effects was revealed; siblings slept poorly, lay awake thinking and had nightmares about cancer; they felt pain in different parts of their body; they felt emotional and angry and were anxious as cancer is life-threatening; in the future the sick child will finished treatment and recovered. Post-intervention; siblings described having specific knowledge, felt more informed, and that it was easier to understand the sick child's situation; they slept better, but still had a lot on their minds regarding the sick child; most siblings said they no longer experienced pain, felt better and were happier but could still get sad; in the future the sick child would be healthy, not exactly as before, but almost.
CONCLUSION:
Person-centered intervention helps siblings to be more knowledgeable about the sick child's cancer, leading to a more realistic view about treatments and consequences. Further studies of person-centered interventions for siblings are important.
Copyright © 2014 Elsevier Ltd. All rights reserved.

"Sjukt viktig" är en pysselbok för barn som av någon anledning kommer i kontakt med sjukvården, det kan vara för egen del men också när någon i dess närhet är sjuk. Boken är tänkt att underlätta för barnet att förstå vad det är som ska hända, händer eller som har hänt, allt får akut vård till planerade sjukhusbesök. Boken är uppbyggd så att barnet själv får vara aktiv och genom pyssel "bygga upp" den situatuion som råder. Boken innehåller även en handledningsdel för den som ska hjälpa barnet att förstå.

Kommunernas tillämpning av bestämmelsen

Den 1 juli 2009 infördes en bestämmelse i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, om att socialtjänsten ska erbjuda stöd till personer som vårdar eller stödjer närstående.

Socialstyrelsens uppföljning visar att socialtjänstverksamheterna i kommunerna tillämpar bestämmelsen i mycket varierande grad. Längst har man kommit inom äldreomsorgen, vilket förklaras av utvecklingen av anhörigstöd i huvudsak skedde inom äldreomsorgen, innan bestämmelsen tillkom. Inom funktionshindersverksamheten och individ- och familjeomsorgen har man kommit igång, men mycket arbete återstår för att omsätta bestämmelsen utifrån de specifika förutsättningar som finns i dessa verksamheter.

Kommunerna har dock överlag blivit bättre på att sätta upp mål, avsätta resurser och organisera arbetet med att stödja anhöriga. Likaså har de ökat sitt utbud av service som stöd till anhöriga. Det betyder sammantaget att kommunerna erbjuder stöd till anhöriga i högre grad än tidigare.

Vad har bestämmelsen inneburit för de anhöriga?

Det är svårt att följa upp och beskriva bestämmelsens effekter för enskilda anhöriga eftersom det saknas underlag för att avgöra om fler anhöriga erbjudits och tagit emot stöd eller inte. Det beror på att uppgifterna om biståndsbeviljade insatser i socialtjänststatistiken inte innefattar uppgifter om bistånd till anhöriga.

Vad anser organisationerna om bestämmelsen?

Överlag är anhörig-, patient-, funktionshinders-, frivillig- och pensionärsorganisationerna kritiska till bristen på stöd, de stora skillnaderna i kvalitet och de stora variationerna mellan kommunerna. Socialtjänsten har också svårt att erbjuda ett individuellt utformat stöd. Vidare kräver de att den personal som arbetar med att stödja anhöriga ska ha kunskaper om de sjukdomar eller funktionsnedsättningar som de närstående har.

Organisationerna framhåller att det stöd som deras medlemmar behöver inte kan tillgodoses enbart inom socialtjänsten, utan det krävs stöd från sjukvården, skolan, arbetsgivaren och myndigheter, t.ex. försäkringskassan. Organisationerna poängterar också problemen med att samordna insatser för den närstående, och att det oftast är de anhöriga som tvingas ta det ansvaret.

Socialtjänstens samarbete med hälso- och sjukvården

Socialtjänsten har ett mycket begränsat samarbete med sjukvården när det gäller stödet till anhöriga, och socialtjänstens företrädare pekar på att det saknas en motsvarande lagstiftning om stöd till anhöriga i sjukvården. Det är också svårt att organisera ett kommunvis samarbete med sjukhus- och specialistvården som ofta betjänar många kommuner samtidigt. Även samarbetet med primärvården fungerar dåligt. Det grundläggande problemet är dock att det saknas en etablerad struktur för samarbetet mellan landstinget och socialtjänsten på området.

Har bestämmelsen fått några andra konsekvenser?

Sedan bestämmelsen infördes bedrivs allt mer av vården och omsorgen i hemmet, som en följd av att det finns färre sjukhusplatser och platser i särskilt boende. Detta får stora konsekvenser för de anhöriga.

I och med bestämmelsen har det blivit tydligt att lagen gäller för hela socialtjänsten och alla dess målgrupper och verksamheter. Bestämmelsen berör alla som vårdar eller stödjer någon närstående, oberoende av den närståendes diagnos, funktionsnedsättning, ålder, kön, relation, boendeförhållanden osv.

Det har också vuxit fram en insikt om att alla påverkas om det finns en hjälpbehövande person i familjen: oavsett om det är en make, ett barn eller en vuxen, en förälder eller ett syskon. Det gäller också oavsett i vilken utsträckning den anhöriga ger vård och omsorg till den sjuke.

En annan erfarenhet är att behovet av att uppmärksamma de anhörigas situation och behov av stöd inte enbart är en fråga för socialtjänsten utan för hela samhället: sjukvården, skolan, arbetslivet, myndigheterna och så vidare. Det pekar på behovet av ett förändrat synsätt, från ett individcentrerat till ett familjeorienterat synsätt i vården och omsorgen.

Socialstyrelsens slutsatser

Socialstyrelsen konstaterar att det återstår en del arbete för att bestämmelsen ska tillämpas mer i socialtjänsten och för att få ett anhöriginkluderande arbetssätt i all vård- och omsorgsverksamhet.

Kommunerna behöver bli bättre på att informera om vilket stöd de kan erbjuda, och hur anhöriga kan gå tillväga för att ansöka om det eller på annat sätt få stöd.
Kommunerna behöver utveckla dialogen med anhörig-, patient-, funk
tionshinders-, frivillig- och pensionärsorganisationerna för att ta vara på de kunskaper och erfarenheter som organisationerna har när det gäller stöd till anhöriga som vårdar närstående.
Huvudmännen behöver utveckla former och rutiner för samarbete kring stödet till anhöriga. Ett sätt kan vara länsövergripande överenskommelser om samverkan mellan sjukvården och socialtjänsten.
Socialtjänstens olika verksamheter, särskilt funktionshindersverksamheten och individ- och familjeomsorgen, behöver fortsatt stöd för att utveckla sin tillämpning av bestämmelsen. Ett fortsatt stöd bör också ta sikte på att utveckla möjligheterna att följa upp utvecklingen av stödet till anhöriga och att stimulera utvecklingen av kunskaper om effekter av stöd till anhöriga.

Riksrevisionen har granskat om staten har gett förutsättningar för ett stöd till anhöriga
omsorgsgivare som motsvarar behoven.
Granskningens bakgrund
Någon gång i livet kommer de flesta av oss att ge omsorg eller hjälp till någon i vår
närhet som drabbas av sjukdom, en funktionsnedsättning eller som får behov av hjälp
på grund av hög ålder. Vi blir då anhöriga omsorgsgivare. Det kan vara så många som
1,3 miljoner anhöriga i Sverige som ger omsorg till en närstående. De flesta anhöriga
ger omsorg av fri vilja och har en god hälsa. Undersökningar visar dock att anhörigas
hälsa, ekonomi, arbetssituation och möjligheter till fritid kan påverkas negativt av
omsorgsgivandet. Ofta bor dessa anhöriga tillsammans med den de ger omsorg till, en
make/maka/partner, ett barn eller ett syskon, och deras omsorg är omfattande.
Att som anhörig ge vård och omsorg ska vara ett frivilligt åtagande och ett komplement
till det offentligas insatser. I praktiken är dock det offentligas insatser ett komplement till
de anhörigas omsorgsgivande enligt regeringen. Ett gott stöd till anhöriga är viktigt för
att undvika negativa konsekvenser av omsorgsgivandet för individer och för samhället.
Syftet har varit att granska om staten har gett förutsättningar för ett stöd till anhöriga
omsorgsgivare som motsvarar behoven. Staten har främst valt att tillgodose anhörigas
behov av stöd genom att ändra socialtjänstlagen, 1998 och 2009, i syfte att förtydliga
kommunernas ansvar för stöd till anhöriga. Efter lagändringen 2009 ska kommunerna
erbjuda stöd till anhöriga. I regeringens propositioner inför lagändringarna har det
framgått att stödet ska kännetecknas av individualisering, flexibilitet och kvalitet.
Granskningen bygger främst på intervjuer med anhöriga, anhörig- och
patientorganisationer, forskare och företrädare för myndigheter och Nationellt
kompetenscentrum anhöriga (Nka). Intervjuerna har kompletterats med
forskningsresultat och kvantitativa studier.

Granskningens resultat
Riksrevisionens övergripande slutsats är att staten inte har gett goda förutsättningar för
ett stöd till anhöriga omsorgsgivare som motsvarar behoven. Granskningen visar att
anhörigas behov av stöd ofta handlar om att den närstående får en god vård och omsorg
men också om ett individanpassat och flexibelt stöd till dem själva.
Kommunernas anhörigstöd behöver utvecklas
En av de möjligheter till individualiserat stöd som regeringen betonade år 2009 var
att anhöriga skulle ansöka om bistånd för egen del. Under granskningen har det
framkommit att det är ovanligt och att omfattningen är svår att följa upp på grund
av bristande dokumentation. Riksrevisionens granskning tyder också på att brister i
kvalitet och flexibilitet i anhörigstöd leder till att anhöriga väljer att inte utnyttja det stöd
som erbjuds.
Det är stora skillnader i vilket stöd som erbjuds anhöriga och hur anhörigstödet styrs
inom och mellan kommuner enligt Socialstyrelsens kartläggningar. Stödet är i de
flesta kommuner mest utbyggt inom äldreomsorgen med utgångspunkt i situationer
där äldre makar ger omsorg till varandra. Det innebär enligt Riksrevisionen att äldre
makar i större utsträckning erbjuds stöd som motsvarar behoven än exempelvis
förvärvsarbetande anhöriga, anhöriga till funktionshindrade eller personer med
psykisk ohälsa. Sedan år 2009 har kommunerna börjat utforma stöd utifrån andra
anhöriggruppers behov i högre utsträckning än tidigare.
Kommunerna har även organiserat, styrt och finansierat anhörigstödet olika. I de
flesta kommunerna har dock anhörigstödet främst bedrivits i projektform, vid sidan
av ordinarie linjeorganisation. Det är också ovanligt att det finns styrdokument som
innehåller rutiner med ett anhörigperspektiv.
Riksrevisionen anser att kommunernas anhörigstöd behöver utvecklas för att uppfylla
intentionerna om ett individualiserat, flexibelt och kvalitativt stöd. Enligt Riksrevisionen
har utbudet av stöd hittills inte varit tillräckligt anpassat till anhörigas skiftande behov
och skillnaderna indikerar att kommunerna i olika utsträckning har valt att prioritera
stöd till anhöriga.
Staten bör ge bättre förutsättningar för det kommunala anhörigstödet
Kommunerna har fått ett stort utrymme att själva avgöra vilket anhörigstöd som de ska
erbjuda eftersom kommunernas ansvar har reglerats med en ramlagsbestämmelse i
socialtjänstlagen. I förarbetena preciserade regeringen att stödet bör kännetecknas av
individualisering, flexibilitet och kvalitet. Eftersom kommunerna har valt att främst
erbjuda anhörigstöd som kommunal service finns det begränsade möjligheter för
domstolarna att tydliggöra vilket stöd kommunerna ska erbjuda genom vägledande
rättsfall.

riksrevisionen granskar: medborgarna och förvaltningen
Regeringen har gett Socialstyrelsen i uppdrag att vägleda kommunerna i
implementeringen av bestämmelsen och inrättat ett nationellt kompetenscentrum
för att förbättra kunskapsläget. Trots dessa åtgärder nås ännu inte intentionerna
med det kommunala anhörigstödet och det skiljer sig åt vilket stöd anhöriga erbjuds
inom och mellan kommuner. Riksrevisionen menar därför att ytterligare vägledning
till kommunerna troligtvis inte är tillräckligt för att åstadkomma anhörigstöd som
motsvarar intentionerna.
Riksrevisionen anser att staten inte har gett tillräckligt goda förutsättningar för ett
kommunalt anhörigstöd som motsvarar intentionerna. Riksrevisionen rekommenderar
därför regeringen att överväga om 5 kap. 10 § socialtjänstlagen behöver förtydligas.
Statens styrmedel kan användas bättre
Sedan år 1999 har staten totalt satsat cirka 2 miljarder kronor på att utveckla
anhörigstöd i kommunerna. Riksrevisionens granskning visar att det delvis är oklart
vilka resultat som uppnåtts med de statliga satsningarna på kommunalt anhörigstöd.
Ett hinder för kunskap om satsningarna är att det saknas nationell statistik över vilket
stöd kommunerna erbjuder anhöriga och som anhöriga tar del av, vilket förklaras av
brister i dokumentation av anhörigstödet.
Varken Socialstyrelsen eller Inspektionen för vård och omsorg har hittills
genomfört någon riktad tillsyn av kommunernas skyldighet att erbjuda anhöriga
stöd. Riksrevisionen bedömer att tillsyn med nuvarande förutsättningar inte är ett
ändamålsenligt styrmedel för att komma tillrätta med problemen i kommunernas
anhörigstöd.
Riksrevisionen rekommenderar att om regeringen vill möjliggöra uppföljning, ökad
kunskap samt tillsyn av anhörigstödet i kommunerna bör regeringen ta ställning
till hur anhörigstödet som ges som service och bistånd ska dokumenteras av
kommunerna.
Det behövs mer kunskap om anhörigomsorgen
Idag finns det inga jämförbara studier om anhörigomsorgens utveckling över tid. De
undersökningar som finns har genomförts av olika aktörer och med olika frågor och
urval. Därmed är resultaten svåra att jämföra. Det saknas också kartläggningar av
omfattningen på minderåriga barns omsorgsgivande till närstående. Sammantaget
medför detta att det även saknas underlag för att bedöma de samhällsekonomiska
konsekvenserna av och kostnaderna för anhörigomsorgen på individ- och samhällsnivå.

stödet till anhöriga omsorgsgivare
Riksrevisionen rekommenderar att regeringen ger en myndighet i uppdrag att följa
anhörigomsorgens omfattning och konsekvenserna för individer och samhället över
tid. Ett steg bör vara att ta fram en samhällsekonomisk analys av anhörigomsorgens
konsekvenser för individer och samhälle. Jämställdhetsaspekterna bör särskilt
uppmärksammas i en sådan analys.
Det bör vara lättare att förena anhörigomsorg med arbete
Anhöriga som arbetar och som ger omsorg är i stor utsträckning beroende av sina
arbetsgivares välvilja för att kunna stanna kvar på arbetsmarknaden. Detta då de
förmåner som finns – närståendepenning och rätten till ledighet vid närståendevård
och av trängande familjeskäl – bara täcker delar av anhörigas behov och används i liten
utsträckning. Anhöriga som arbetar är i många fall beroende av att själva kunna styra
sina arbetstider och att ta ledigt med kort varsel. Flera anhöriga tar också ut semester
och flextid för att kunna ge omsorg till sina närstående.
Riksrevisionen rekommenderar att regeringen överväger om delar av
socialförsäkringssystemet och arbetsmarknadslagstiftningen bör anpassas till anhörigas
behov för att underlätta för anhöriga att förena anhörigomsorg med arbete.
Det bästa anhörigstödet är en god vård och omsorg
Riksrevisionen anser att kvalitetshöjande åtgärder inom vård och omsorg är det som
i störst utsträckning skulle förbättra för anhöriga. I intervjuer har det framkommit
att det bästa stödet till anhöriga är en god vård och omsorg om den närstående. Det
handlar om omsorgsinsatser som exempelvis särskilda boenden och hemtjänst,
vårdinsatser som behandling och vårdplatser på sjukhus men också personal med rätt
utbildning och kompetens. Riksrevisionen har inte granskat vården och omsorgen om
den närstående i sig men har valt att redovisa hur viktig vården och omsorgen om den
närstående är för anhörigas situation och behov av stöd.
Det ska vara frivilligt att ge anhörigomsorg i Sverige. Riksrevisionen anser att en
förutsättning för frivillighet är att det finns ett alternativ till anhörigas insatser i form av
en god offentlig vård och omsorg. Riksrevisonens bedömning utifrån intervjuer under
granskningen är att många anhöriga tar på sig ett större ansvar än de egentligen vill på
grund av brister i vården och omsorgen.
Många anhöriga upplever att en av de tyngsta bördorna de har att bära är den
samordnande och koordinerande roll de ofta måste ta på sig. Om anhöriga inte tog på
sig koordinatorrollen skulle mycket falla mellan stolarna. Riksrevisionen menar att
detta är ett svårlöst problem som är kopplat till uppdraget till och organiseringen av
vården och omsorgen.
riksrevisionen granskar: medborgarna och förvaltningen

I Riksrevisionens intervjuer framkommer att anhörigas behov av att bli sedda och
få information och kunskap sällan tillgodoses i kontakter med vård och omsorg.
Vidare framförs i intervjuerna att vårdplaneringar är en situation där många anhöriga
känner sig osynliga. Riksrevisionen rekommenderar att regeringen bör se till att det tas
fram utbildningar för att sprida kunskap till anställda i kommuner och landsting om
anhörigas betydelse för vård och omsorg samt hur vården och omsorgen kan stödja
anhöriga genom bland annat information och bemötande.
De anhöriga som Riksrevisionen har intervjuat upplever att de måste kämpa för att få
de insatser som den närstående behöver från kommunerna och att de befinner sig i ett
kunskapsunderläge i förhållande till kommunerna om vilka insatser den närstående
har rätt till. Anhöriga beskriver också att det är svårt, tidskrävande och påfrestande
att överklaga beslut. Riksrevisionen rekommenderar regeringen att ge Socialstyrelsen i
uppdrag att informera om rätten till stöd och insatser i SoL och LSS och hur praxis ser
ut om regeringen vill underlätta för anhöriga.
Landstingen saknar ett strukturerat arbete med att ge stöd till vuxna anhöriga enligt
Nationellt kompetenscentrum anhöriga, Anhörigas Riksförbund och Socialstyrelsen.
I hälso- och sjukvårdslagen finns endast ett generellt folkhälsoförebyggande uppdrag
och ett uppdrag om att ge stöd till minderåriga barn i vissa situationer. Riksrevisionen
rekommenderar regeringen att överväga om landstingens ansvar för stöd till anhöriga
behöver förtydligas i hälso- och sjukvårdslagen.

The Moving Parents and Children Together (M-PACT) programme is one of the growing number of interventions tailored to meet the multiple and complex needs of children and families affected by parental substance misuse. This paper pulls together the qualitative findings from 13 evaluated M-PACT programmes in England. Sixty-four families attended an M-PACT programme, including 82 children and 75 adults. Qualitative data were collected from 37 children, 36 adults and over 30 group facilitators. Six themes are discussed: engaging with M-PACT, shared experiences, understanding addiction, changes in communication, healthier and united families, and ending M-PACT. The majority of families benefitted in a range of ways from the programme: meeting others who were experiencing similar problems, greater understanding about addiction and its impact on children and families improving communication within the family. In many families there was more openness and honesty, stronger relationships and more time as families, and a reduction in arguments and conflict. The key findings are discussed in terms of the potential for interventions of this kind to reduce family-related harm from parental substance misuse.

Background
Aboriginal Australians experience a disproportionately high burden of alcohol-related harm compared to the general Australian population. Alcohol treatment approaches that simultaneously target individuals and families offer considerable potential to reduce these harms if they can be successfully tailored for routine delivery to Aboriginal Australians. The Community Reinforcement Approach (CRA) and Community Reinforcement and Family Training (CRAFT) are two related interventions that are consistent with Aboriginal Australians' notions of health and wellbeing. This paper aims to describe the process of tailoring CRA and CRAFT for delivery to Aboriginal Australians, explore the perceptions of health care providers participating in the tailoring process, and their experiences of participating in CRA and CRAFT counsellor certification.

Methods
Data sources included notes recorded from eight working group meetings with 22 health care providers of a drug and alcohol treatment agency and Aboriginal Community Controlled Health Service (November 2009-February 2013), and transcripts of semi-structured interviews with seven health care providers participating in CRA and CRAFT counsellor certification (May 2012). Qualitative content analysis was used to categorise working group meeting notes and interview transcripts were into key themes.

Results
Modifying technical language, reducing the number of treatment sessions, and including an option for treatment of clients in groups, were key recommendations by health care providers for improving the feasibility and applicability of delivering CRA and CRAFT to Aboriginal Australians. Health care providers perceived counsellor certification to be beneficial for developing their skills and confidence in delivering CRA and CRAFT, but identified time constraints and competing tasks as key challenges.

Conclusions
The tailoring process resulted in Aboriginal Australian-specific CRA and CRAFT resources. The process also resulted in the training and certification of health care providers in CRA and CRAFT and the establishment of a local training and certification program.

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

We conducted a pragmatic, mixed methods study comparing rural family caregivers
receiving e-health caregiver support (n = 35) with a control group (n = 21)
receiving conventional, non-e-health, caregiver support. After 18 months, the
benefits of support were evaluated using the Care Effectiveness Scale (40-items
exploring the domains of preparedness, enrichment and predictability). In all
domains the e-health group scored significantly higher than the control group.
The adjusted difference for overall benefits was 3.0 (P = 0.02) on the scale
0-10. In addition, semi structured interviews were conducted with a sub-sample of
the caregivers. For the e-health group flexibility, availability and being able
to individualise the support were essential factors. All caregivers in the
control group found conventional support to be beneficial, but also stressed
unmet needs related to the conventional support being standardised and
non-flexible. The study suggests that providers of caregiver support should offer
e-health support as an alternative to conventional caregiver support, as it can
be more beneficial to family caregivers.

The study by Tan et al. is of interest because it shows that children′s development is not necessarily delayed because of disability, specifically cerebral palsy (CP).[1] CP is one of the most common childhood-onset disabilities and a condition frequently researched. PubMed, for example, reports 13 885 hits for CP compared with conditions such as developmental delay (6079) and myelomeningocele (602). As CP causes activity limitations, which can lead to restrictions in socially or culturally influenced areas of life, the study by Tan et al. provides insights into the social strengths that children with CP have. The results, indicating that many of the children diagnosed with CP can develop to the same level of social participation as children without disability (even though it may take more time), should have a positive impact on the expectations of their caregivers and families. Hopefully adults might increase their efforts to teach children with disabilities to interact with peers instead of mostly communicating with adults.[2]

The construct of participation has various interpretations and the rating of participation is controversial. This study aimed to address 'performance of social participation', from the perspective of socialization including interrelationships, play and leisure time; coping rated with the Vineland Adaptive Behavior Scale; and social function rated with Pediatric Evaluation of Disability Inventory. In the International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY),[3] participation is defined as 'involvement in a life situation'. It includes two aspects: to attend activities, i.e. be there, and to experience engagement while being there.[4] The ratings reported in this study reflect the abilities needed for social interactions, not necessarily how a child carries out the interactions in various life situations. The ratings are in accordance with how capacity is rated using the ICF-CY qualifiers, but does not reflect the children′s attendance or engagement. Therefore, the children′s performance of social participation is not fully established.

The Tan et al. study has several implications for clinical practice. For example, doing and being with others, which are elements of social participation, facilitate learning and development and should be considered by the adults who are around children with disabilities.[5, 6] Child participation, as a determinant of well-being and life satisfaction, may also decrease mental health problems.[7] In addition to the abilities needed for social interactions, social participation includes an experience of belonging and inter-subjective interaction that leads into acts of acknowledgment.[8] Because adults provide 'scaffolds' for the experiences of children with disabilities, parents and teachers have the responsibility to encourage the children to start interacting with peers and to introduce them to potential friends. The results reported in this study in terms of the development of children's abilities for interactions, should influence the adults' attitudes to the children's social roles in a positive way.

When receiving support from adults, it is likely that the children's understanding of and adaption to social demands improve. For children with CP, participation restrictions are most often associated with their physical impairments related to environmental barriers, such as reduced access to venues and events.[9, 10] However, negative social attitudes to disability may also constitute barriers to participation. As children with disabilities attend community activities less frequently than typically developing children,[11] adults must make efforts to introduce the children to such activities in addition to introducing them to those peers sharing the activity.

For persons with severe CP or persons with additional intellectual disability, the result of the study shows there is no specific age where development ceases. This should be seen as a promising finding that should encourage parents and professionals to continue to stimulate social development across ages.

In this study, developmental trajectories were stratified by level of gross motor functioning. For future research, the authors note the need for enhanced insight into the additional determinants of social participation development, such as CP characteristics and contextual factors. Since manual abilities are important for diverse activities, communication included, should the developmental trajectories also be stratified by the children's level of fine motor functioning?

OBJECTIVES: The aim was to describe the existential life situations of spouses
who care for persons with dementia, before and after relocation to nursing homes.
METHOD: This was a qualitative study among 11 spouses of persons with dementia,
recruited via purposeful sampling. Data were collected through interviews and
analysed with interpretive content analysis.
RESULTS: Before the relocation to nursing homes, the spouses' existential life
situations were characterized by feelings of shame and guilt, being isolated in
the home. Spouses were also exposed to psychological threats, physical violence,
and had feelings of placing one's own needs last. After the relocation, spouses
described feelings of guilt and freedom, living with grief and thoughts of death,
feelings of loneliness in the spousal relationship, and striving for acceptance
despite a lack of completion.
CONCLUSION: The existential life situation of spouses of persons with dementia is
about being in limit situations which changes when the ill person relocates to a
nursing home. This is important knowledge for health care staff to bear in mind
at nursing homes when encountering spouses.

BACKGROUND:
Previous findings suggest that the loss of a family member is associated with health and mortality. The purpose of this study was to investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association.
OBJECTIVE:
To investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association.
METHODS:
We used cross-sectional data with retrospective questions from the Swedish Level of Living Survey (LNU) of 2000, including 5,142 individuals. The bereavement experiences examined in the study include the loss of a sibling, a parent or a spouse, and time since the death of a parent. BMI (kg/m2) was calculated using self-reported measurements of weight and height. The association between bereavement and BMI was evaluated through linear regressions.
RESULTS:
After controlling for possible confounders, most of the models detected an association between bereavement and BMI. The fully-adjusted model showed that loss of parents was associated with a 0.45 increase in BMI (SE = 0.20). The effect also seemed to be dependent on time since the loss and social class position.
CONCLUSIONS:
The present study is the first to examine associations between different types of familial losses and BMI. We find an association between the death of a family member and BMI, but it appears to be related to time since the death, type of bereavement experience and social class.

Longitudinal studies of children of alcoholics in a community context are rare, but are of special interest because they provide the opportunity to study families with alcoholic parents who do not reach clinical settings and with offspring who do not receive professional help. The current study reports on the 65 offspring of alcoholics who participated in the Kauai Longitudinal Study. The extensive data on these analyses included questionnaires and interviews of both children and adults that were collected over a 30-year period. The data showed that individuals who coped effectively with the trauma of growing up in an alcoholic family and who became competent adults relied on a significantly larger number of sources of support in their childhood and youth than did the offspring of alcoholics with coping problems by age 32.

This study investigated the extent to which parental Attention-Deficit/Hyperactivity Disorder (ADHD) symptoms impact child and parent outcomes following a multimodal family-school intervention, the Family School Success (FSS) program, when compared to an active-control condition (CARE). Participants were 139 children with ADHD (67% male; 91% non-Hispanic; 77% Caucasian; Grades 2-6) and their primary caretaker (91% female; ages 26-59) who participated in a randomized clinical trial evaluating the efficacy of FSS. Associations were examined between parent-reported ADHD symptoms at baseline and intervention outcomes reported by parents and teachers after treatment and at a 3-month follow-up, including child homework and classroom impairments, child ADHD and oppositional defiant disorder symptoms, parenting behaviors, and parent-teacher relationship quality. Across both treatment conditions, parental ADHD was not associated with parent or child outcomes at postassessment. However, differences emerged between the two treatment groups at follow-up for parents with ADHD, particularly when an empirically supported symptom cutoff was used to identify parents at risk for having ADHD. In FSS, but not in CARE, parental ADHD was associated with declines in treatment gains in the quality of the parent-teacher relationship and the child's homework performance. Parents at risk for ADHD had difficulty maintaining treatment effects for themselves and their child in the FSS intervention but not in CARE. The supportive and educational components central to the CARE intervention may be helpful in promoting the sustainability of psychosocial interventions for children with ADHD who have parents with elevated ADHD symptoms.

Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning

Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning

Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.

I bedömningen av barns rätt till assistansersättning ska Försäkringskassan
räkna bort det hjälpbehov som en vårdnadshavare normalt ska
tillgodose, det så kallade föräldraansvaret. Syftet med granskningen
är att undersöka hur Försäkringskassan tar hänsyn till föräldraansvaret
när den bedömer rätten till assistansersättning för personlig assistans.
Principen om normalt föräldraansvar finns i förarbetena till assistansreformen
år 1994, och fördes in i 51 kap. 6 § socialförsäkringsbalken
år 2011. Det framgår dock varken av bestämmelsen eller av
förarbetena till den hur föräldraansvaret ska avgränsas och bedömas.
Försäkringskassan beskriver inte i vägledningen när eller hur handläggare
ska göra avdrag för normalt föräldraansvar. Vid intervjuer
med handläggare vid lokala försäkringscenter (LFC) har det också
kommit fram att styrningen från huvudkontoret uppfattas som otillräcklig.
En granskning av Försäkringskassans akter för ärenden om assistansersättning
för barn visar dessutom att Försäkringskassans bedömningar
av föräldraansvaret varierar.
Av intervjuerna framgår vidare att det finns tydliga skillnader i utgångspunkten
av bedömningen av föräldraansvaret vid prövning av
barns rätt till personlig assistans, vilket också bekräftar resultaten
från aktstudien. Det förekommer till exempel att de intervjuade handläggarna
utgår från egna eller kollegors erfarenheter av vad barn i
en viss ålder klarar av, utöver den begränsade praxis som finns på
området.
Det har under åren i olika sammanhang konstaterats att Försäkringskassan
saknat verktyg för att säkerställa en enhetlig och rättsäker
tillämpning av principen om föräldraansvar i assistansersättningen.
Denna granskning visar att problemet kvarstår.
8
ISF föreslår att
 Försäkringskassan utvecklar sin styrning och stödet till handläggarna
genom att ta fram ett verktyg för att bedöma vad
som är normalt i omhändertagandet av barn i olika åldrar, till
exempel enligt ett beprövat klassifikationssystem av typen
ICF-CY1
,
 Försäkringskassan vidareutvecklar rutiner kring hur bedömningen
av föräldraansvaret dokumenteras i missiv och beslut
för att öka transparensen,
 regeringen låter utreda utformningen av den rättsliga regleringen
av föräldraansvaret.

I bedömningen av barns rätt till assistansersättning ska Försäkringskassan
räkna bort det hjälpbehov som en vårdnadshavare normalt ska
tillgodose, det så kallade föräldraansvaret. Syftet med granskningen
är att undersöka hur Försäkringskassan tar hänsyn till föräldraansvaret
när den bedömer rätten till assistansersättning för personlig assistans.
Principen om normalt föräldraansvar finns i förarbetena till assistansreformen
år 1994, och fördes in i 51 kap. 6 § socialförsäkringsbalken
år 2011. Det framgår dock varken av bestämmelsen eller av
förarbetena till den hur föräldraansvaret ska avgränsas och bedömas.
Försäkringskassan beskriver inte i vägledningen när eller hur handläggare
ska göra avdrag för normalt föräldraansvar. Vid intervjuer
med handläggare vid lokala försäkringscenter (LFC) har det också
kommit fram att styrningen från huvudkontoret uppfattas som otillräcklig.
En granskning av Försäkringskassans akter för ärenden om assistansersättning
för barn visar dessutom att Försäkringskassans bedömningar
av föräldraansvaret varierar.
Av intervjuerna framgår vidare att det finns tydliga skillnader i utgångspunkten
av bedömningen av föräldraansvaret vid prövning av
barns rätt till personlig assistans, vilket också bekräftar resultaten
från aktstudien. Det förekommer till exempel att de intervjuade handläggarna
utgår från egna eller kollegors erfarenheter av vad barn i
en viss ålder klarar av, utöver den begränsade praxis som finns på
området.
Det har under åren i olika sammanhang konstaterats att Försäkringskassan
saknat verktyg för att säkerställa en enhetlig och rättsäker
tillämpning av principen om föräldraansvar i assistansersättningen.
Denna granskning visar att problemet kvarstår.
8
ISF föreslår att
 Försäkringskassan utvecklar sin styrning och stödet till handläggarna
genom att ta fram ett verktyg för att bedöma vad
som är normalt i omhändertagandet av barn i olika åldrar, till
exempel enligt ett beprövat klassifikationssystem av typen
ICF-CY1
,
 Försäkringskassan vidareutvecklar rutiner kring hur bedömningen
av föräldraansvaret dokumenteras i missiv och beslut
för att öka transparensen,
 regeringen låter utreda utformningen av den rättsliga regleringen
av föräldraansvaret.

Background
Visual impairment is associated with important limitations in functioning. The International Classification of Functioning, Disability and Health (ICF) adopted by the World Health Organisation (WHO) relies on a globally accepted framework for classifying problems in functioning and the influence of contextual factors. Its comprehensive perspective, including biological, individual and social aspects of health, enables the ICF to describe the whole health experience of persons with visual impairment. The objectives of this study are (1) to analyze whether the ICF can be used to comprehensively describe the problems in functioning of persons with visual impairment and the environmental factors that influence their lives and (2) to select the ICF categories that best capture self-perceived health of persons with visual impairment.

Methods
Data from 105 persons with visual impairment were collected, including socio-demographic data, vision-related data, the Extended ICF Checklist and the visual analogue scale of the EuroQoL-5D, to assess self-perceived health. Descriptive statistics and a Group Lasso regression were performed. The main outcome measures were functioning defined as impairments in Body functions and Body structures, limitations in Activities and restrictions in Participation, influencing Environmental factors and self-perceived health.

Results
In total, 120 ICF categories covering a broad range of Body functions, Body structures, aspects of Activities and Participation and Environmental factors were identified. Thirteen ICF categories that best capture self-perceived health were selected based on the Group Lasso regression. While Activities-and-Participation categories were selected most frequently, the greatest impact on self-perceived health was found in Body-functions categories. The ICF can be used as a framework to comprehensively describe the problems of persons with visual impairment and the Environmental factors which influence their lives.

Conclusions
There are plenty of ICF categories, Environmental-factors categories in particular, which are relevant to persons with visual impairment, but have hardly ever been taken into consideration in literature and visual impairment-specific patient-reported outcome measures.

Detta material är en vägledning för samtalsledare i lärande nätverk och i
olika utbildningssituationer om AKK - Alternativ och Kompletterande
Kommunikation för barn och personer med kommunikativa funktionsnedsättningar.
Vägledningen är tänkt att fungera tillsammans med två andra dokument. Det ena är ett inspirationsmaterial benämnt Röster om kommunikation. Det andra dokumentet är en kunskapsöversikt inom området AKK.

Webbupplaga

Although a fair amount is known about young children's production of negation, little is known about their comprehension. Here, we focus on arguably the most complex basic form, denial, and how young children understand denial, when it is expressed in response to a question with gesture, single word, or sentence. One hundred twenty-six children in 3 age groups (Ms = 1 year 9 months, 2 years 0 months, and 2 years 4 months) witnessed an adult look into 1 of 2 buckets and then, in response to a question about whether the toy was in there, communicate either something positive (positive head nod, "yes," "it is in this bucket") or negative (negative head shake, "No," "It's not in this bucket"). The youngest children did not search differently in response to any of the communicative cues (nor in response to an additional cue using both gesture and single word). Children at 2 years 0 months searched at above-chance levels only in response to the negative word and negative sentence. Children at 2 years 4 months were successful with all 3 types of cues in both positive and negative modalities, with the exception of the positive sentence. Young children thus seem to understand the denial of a statement before they understand its affirmation, and they understand linguistic means of expressing denial before they understand gestural means.

Although a fair amount is known about young children's production of negation, little is known about their comprehension. Here, we focus on arguably the most complex basic form, denial, and how young children understand denial, when it is expressed in response to a question with gesture, single word, or sentence. One hundred twenty-six children in 3 age groups (Ms = 1 year 9 months, 2 years 0 months, and 2 years 4 months) witnessed an adult look into 1 of 2 buckets and then, in response to a question about whether the toy was in there, communicate either something positive (positive head nod, "yes," "it is in this bucket") or negative (negative head shake, "No," "It's not in this bucket"). The youngest children did not search differently in response to any of the communicative cues (nor in response to an additional cue using both gesture and single word). Children at 2 years 0 months searched at above-chance levels only in response to the negative word and negative sentence. Children at 2 years 4 months were successful with all 3 types of cues in both positive and negative modalities, with the exception of the positive sentence. Young children thus seem to understand the denial of a statement before they understand its affirmation, and they understand linguistic means of expressing denial before they understand gestural means. (PsycINFO Database Record (c) 2014 APA, all rights reserved)

The present study examines multiple types of victimization simultaneously, their prevalence and characteristics in childhood and adolescence, and it examines the associations between victimization and poly-victimization on the one hand and single and multiple mental health and behavioral problems on the other. The sample consisted of 2,500 Swedish young adults (20-24 years) who provided detailed report of multiple types of lifetime victimization and current health and behaviors via an interview and a questionnaire. Results showed that it was more common to be victimized in adolescence than in childhood and more common to be victimized repeatedly rather than a single time, among both males and females. Males and females were victimized in noticeably different ways and partially at different places and by different perpetrators. With regard to mental health and behavioral problems, anxiety, post-traumatic stress, self-harm, and criminality were clearly overrepresented among both males and females who had experienced any type of victimization. Poly-victimization was related to single and multiple mental health and behavioral problems among both males and females. We conclude that professionals need to conduct thorough evaluations of victimization when completing mental health assessments among troubled youths, and that youth might benefit from the development of interventions for poly-victimized youth.

Avhandlingens övergripande syfte är att fördjupa kunskapen om att vara förälder till vuxet barn med långvarig psykisk sjukdom. Delstudiernas speciella syften är:

Att beskriva hur mammor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag.
Att beskriva hur pappor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag
Att beskriva hur förälder till vuxet barn med psykisk sjukdom uppfattar den psykiatriska vården.
Att undersöka en grupp mammor och pappor till vuxet barn med långvarig psykisk sjukdom i Sverige och deras hälsorelaterade lisvkvalitet i förhållande till en normalpopulation, deras självskattade symptom på ångest, depression och belastning samt erfarenheter av möten med den psykiatriska vården.

ABSTRACT An empirical study of the effectiveness of an eight-week children's bereavement psychotherapy group was undertaken. Children, aged 7–11, who had a parent and/or sibling die were initially assigned to either a treatment group or a waiting list control group and followed over an eight-week period. Participation in the experimental group was associated with a significant decrease in symptomatology, as assessed by multiple measures using multiple sources. Despite a small sample, the intervention was sufficiently powerful to suggest the use of short-term group therapy to help children cope with the death of a parent and/or sibling.

A treatment outcome study of bereavement groups for children - ResearchGate. Available from: http://www.researchgate.net/publication/226810839_A_treatment_outcome_study_of_bereavement_groups_for_children [accessed Jun 23, 2015].

When Alison Hargreaves lost her life climbing K2 in the Himalayas, her widower was strongly criticised for acceding to their 6 year old son's request to see "mummy's last mountain" and even more so when he took along on the trek their 4 year old daughter. But the ensuing expedition clearly enabled the children to process the information about their mother's death and to begin the task of mourning. As the general practitioner who accompanied and counselled the children reported,1 after seeing the mountain, building a memorial cairn at its base, and using a workbook designed to help young children to understand and come to terms with death,2 Kate was able to say, "Mummy had tried her best to come down and see us, but she just couldn't, the storm was so strong."

ABSTRACT analyze the coping process, emphasizing the relevance of coping research to understanding adaptive functioning more generally / begin by considering general conceptualizations of coping, and present an integrative conceptual approach / describe the relation between different coping strategies and adaptive functioning / present 2 models of adaptive functioning—reflecting both stress resistance and crisis growth—that depend on coping as a central mechanism / highlight key issues that refine our general understanding of coping and adaptation.

This article is an attempt to explain why the stories of those who suffer from affective disorder have gone unspoken, and to describe how the Preventive Intervention Project (PIP) helps to elaborate a narrative process within families. The PIP is a short-term, psychoeducational intervention focused on enhancing family understanding of affective disorder, and on building resiliency in children. Detailed descriptions of interventions with two families are used to demonstrate how the PIP works with parents and children: to move the narrative process from private to shared meaning. We discuss how cultural "canons" regarding affective illness reinforce a tendency to keep that experience private. We then show how the PIP provides an alternative, "schematic base" of understanding that facilitates a family's ability to begin a dialogue about their illness. We hope to demonstrate how this modernist, psychoeducational framework can be integrated with a more open-ended, postmodern construction of meaning.

ABSTRACT Dispositional and situational measures of children's coping were developed using a theoretically based approach. Two studies (N1 = 217; N2 = 303) assessed the psychometric characteristics of these measures in fourth- through sixth-grade children. Confirmatory factor analyses indicated that a four-factor model of dispositional coping (active, distraction, avoidant, and support seeking) provided a better fit to the data than either the problemversus emotion-focused (Lazarus & Folkman, 1984) or passive versus active (Billings & Moos, 1981) coping models. The four-factor model was largely invariant with respect to age and gender. Moderate to high correlations were found between the parallel subscales of the dispositional and situational measures of coping. Although the four factor structures of the dispositional and situational measures were generally similar, factor loadings and correlations between dimensions were not equivalent.

BACKGROUND:
Attention-deficit hyperactivity disorder (ADHD) is a familial disorder that places the siblings of ADHD children at high risk for ADHD, conduct, mood, and anxiety disorders. Although the pattern of psychiatric risk has been well documented by prior family studies, neither the short- nor long-term outcome of these high-risk siblings has been prospectively examined.
OBJECTIVE:
To document the 4-year psychiatric, psychosocial, and neuropsychological outcome of the siblings of children with ADHD.
METHOD:
DSM-III-R structured diagnostic interviews and blind raters were used to conduct a 4-year follow-up of siblings from ADHD and control families. The siblings were also evaluated for cognitive, achievement, social, school, and family functioning.
RESULTS:
At follow-up, significant elevations of behavioral, mood, and anxiety disorders were found among the siblings of ADHD children. The high-risk siblings had high rates of school failure and showed evidence of neuropsychological and psychosocial dysfunction. These impairments aggregated among the siblings who had ADHD.
CONCLUSIONS:
The siblings of ADHD children are at high risk for clinically meaningful levels of psychopathology and functional impairment. In addition to supporting hypotheses about the familial transmission of ADHD, the results suggest that the high-risk siblings might be appropriate targets for primary preventive interventions.

Our whole society may be obsessed with "family values," but as John Gillis points out in this entertaining and eye-opening book, most of our images of "home sweet home" are of very recent vintage. A World of Their Own Making questions our idealized notion of "The Family," a mind-set in which myth and symbol still hold sway. As the families we live with become more fragile, the symbolic families we live by become more powerful. Yet it is only by accepting the notion that our ritual, myths, and images must be open to perpetual revision that we can satisfy our human needs and changing circumstances.

This study presents results of a subgroup analysis from a randomized trial to examine whether Structural Ecosystems Therapy (SET), a family intervention intended to improve medication adherence and reduce drug relapse of HIV-seropositive (HIV+) women recovering from drug abuse, provided benefits for families with children. Data from 42 children and 25 mothers were analyzed at baseline, and 4, 8, and 12 months post-baseline. Results of longitudinal Generalized Estimating Equations analyses suggested that SET was more efficacious than the Health Group (HG) control condition in decreasing children's internalizing and externalizing problems and reducing mothers' psychological distress and drug relapse. Children in SET reported improvements in positive parenting as compared to the children in HG, but there were no differences in mother-reported positive parenting, or parental involvement as reported by either the children or mothers. These findings suggest that family interventions such as SET may be beneficial for mothers and children. An adaptation of SET specifically for families with children could further enhance benefits and improve acceptability and cost-effectiveness.

The primary purpose of this study was to establish whether contrasting teaching methods had an effect on performance accuracy in the recall of graphic symbols. The secondary purpose was to establish whether the iconicity of symbols had an effect on performance accuracy. A direct symbol-teaching method and a contextual symbol-teaching method were investigated using a total of 72 Picture Communication Symbols (PCSs; Johnson, 1985). Fourteen children with physical disabilities and additional learning difficulties took part in the study. Ten participants had little or no functional speech. The results showed that, averaging across all other factors, the direct-teaching method produced better results than the contextual-teaching method and that performance accuracy was greater with transparent symbols. Results also showed a significant interaction between the direct-teaching method and translucent/opaque symbols. Further analysis of the descriptive data suggests that age, rather than educational or language ability, was a significant factor. Implications for augmentative and alternative communication (AAC) practices are discussed.

The primary purpose of this study was to establish whether contrasting teaching methods had an effect on performance accuracy in the recall of graphic symbols. The secondary purpose was to establish whether the iconicity of symbols had an effect on performance accuracy. A direct symbol-teaching method and a contextual symbol-teaching method were investigated using a total of 72 Picture Communication Symbols (PCSs; Johnson, 1985). Fourteen children with physical disabilities and additional learning difficulties took part in the study. Ten participants had little or no functional speech. The results showed that, averaging across all other factors, the direct-teaching method produced better results than the contextual-teaching method and that performance accuracy was greater with transparent symbols. Results also showed a significant interaction between the direct-teaching method and translucent/opaque symbols. Further analysis of the descriptive data suggests that age, rather than educational or language ability, was a significant factor. Implications for augmentative and alternative communication (AAC) practices are discussed.

Hur är det att vara anhörigtill en person med demenssjukdom? Vilket stöd ges från sam-hällets sida och överensstämmer det med de verkliga behoven? Hur upplever vårdpersonaloch biståndshandläggare det är att stödja anhöriga? Var finns problemen, och hur ska vigöra för att lösa dem? Det är några av de frågor vi har ställt och försöker ge svar på i dennafokusrapport. Demens beskrivs ofta som de anhörigas sjukdomeftersom de förändringar som följer medsjukdomsutvecklingen starkt påverkar livskvaliteten även för de anhöriga. De anhöriga, somofta själva är äldre, har en avgörande roll när det gäller vården av personer med demens-sjukdom.1Invanda mönster och maktförhållanden förändras i en familj när någon insjuknari demenssjukdom.2Att vårda en närstående är vanligt i åldrarna 75 till 84 år, ungefär likamånga män som kvinnor.3Att vara anhörig till en person med demenssjukdom påverkar hälsa, social situation, eko-nomi, livskvalitet och levnadsvillkor i hög grad.Ett flertal studier visar att anhöriga somvårdar en person med Alzheimersjukdom löper en ökad risk för depression4. Data från stu-dier visade att inflyttningen på särskilt boende kan framflyttas med sex månader om anhö-riga erbjuds stöd och hjälp när den demenssjuka fortfarande bor hemma. Välinformeradeoch kunniga anhöriga är en tillgång för både landsting och kommun. Från den 1 juli 2009 är kommunens skyldighet att ge stöd till anhöriga förtydligad genomen ändring i socialtjänstlagen. Kommunal hälso- och sjukvård och socialtjänst ska er-bjuda ett individuellt anpassat stöd till anhöriga, men också arbeta för att se, respektera ochsamarbeta med anhöriga.6Landstinget har ingen uttalad skyldighet att stödja anhöriga men har i uppdrag att svara förförebyggande hälso- och sjukvård enligt 2 c § Hälso- och sjukvårdslagen. Det innebärbland annat att identifiera personer eller grupper som riskerar att drabbas av ohälsa. Hälso-och sjukvården har en otydlig roll i dagens anhörigstöd. Sedan 2010 finns bestämmelser i hälso- och sjukvårdslagen och socialtjänstlagen att närbehov finns ska en gemensam individuell plan upprättas för personer med psykiska funk-tionsnedsättningar. Planeringen ska göras tillsammans med patient och anhöriga.De behov som anhöriga till personer med demenssjukdom har, liknar i stor utsträckning be-hoven som andra anhöriga har, det vill säga där det handlar om andra svåra kroniska sjuk-domar eller psykiska funktionshinder. Nästan oavsett vilka sjukdomstillstånd det handlar om innebär vardagen som anhörig ett stort antal utmaningar där samhället måste erbjudastöd och hjälp. I Socialstyrelsens "Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010"belyses hela vårdkedjan - över huvudmannaskapsgränserna. I riktlinjerna framgår hur deolika aktörerna bör strukturera sitt arbete för att kunna säkra god och jämförbar vård förpersoner med demens. I de nationella riktlinjerna lyfts begreppet personcentrerad omvårdnadfram, det vill sägaatt omhändertagandet av personer med demenssjukdom i möjligaste mån ska individanpas-sas. Flertalet anhöriga anser att personal inom vård och omsorg inte tar tillvara anhörigaskunskap om deras närstående. För att lyckas med det krävs att företrädare från kommuneroch landsting betraktar anhöriga som samarbetspartners. På så sätt ökas självkänslanhos anhöriga och främjar deras självständighet. Det bidrar också till att man inom kommunoch landsting får en korrekt bild av vad som behövs i ett fungerande anhörigstöd.Olika typer av tekniska hjälpmedel kan även vara till stor hjälp för den anhöriga och bevaraden demenssjuke personens oberoende så länge som möjligt. Idag förskrivs sällan hjälpme-del för patientgruppen med demenssjukdom.I denna fokusrapport redovisas en sammanställning av material insamlat från Socialstyrelsen,Länsstyrelsen i Stockholm, "Stiftelsen Äldrecentrum" och "Nationellt kompetenscentrumAnhöriga" samt en ny kartläggning bestående av fokusgruppsintervjuermed anhöriga,distriktssköterskor, biståndshandläggare och personal på minnesmottagningar i länet. Enkartläggning som visar att: -Anhöriga är i behov av mer stöd och avlastning än de i dagsläget erbjuds.- Många anhöriga tycker att det är svårt att veta vem de ska vända sig till för att få hjälp eftersom det finns flera huvudmän. - Det finns brist i kompetens hos personal som vårdar personer med demens.- Företrädare inom såväl kommun som landsting anser att det behövs en tydligare be-skrivning av vem som ansvarar för vad ifråga om personer med demens, samt en önskan om fler och bättre samverkansformer för att förhindra att personer med demens"faller mellan stolarna". - Vårdpersonal och biståndshandläggare uttrycker önskemålet om att det borde finnas en funktion/roll som är huvudansvarig för varje person med demenssjukdom, och somkan följa denna/denne genom hela vårdkedjan. Resultaten som presenteras i denna rapport är en sammanvägning av allt material somnämns ovan, dvs en analys av kartläggningens olika delmoment: litteraturgenomgång ochfokusgruppsintervjuer. FörbättringsområdenInformation och utbildning till anhörigaUtbildningsprogram till anhöriga kan minska stress och risk för såväl fysisk som psykiskohälsa, och öka deras förmåga att hantera beteendemässiga problem. Utbildning kan ges iform av kontinuerlig och strukturerad information om demenssjukdomar, bemötande ochvilket stöd samhället erbjuder till anhöriga. Utbildningen kan ges individuellt eller i grupp.Primärvården och distriktssjuksköterskan har en viktig roll i fråga om anhörigstöd som be-höver förtydligas särskilt med tanke på att strukturerad anhörigutbildning med psykosocialtstöd ännu inte är rutinförfarande.Såväl kommuner som landsting behöver ge tydligare information om hur ansvarsfördel-ningen ser ut på sina respektive webbplatser. Broschyrmaterial behöver också arbetas framför att finnas tillängligt på de platser där anhöriga och närstående vistas. Det finns flera pa-tient- och frivilligorganisationer som gör viktiga insatser för människor med demenssjuk-dom. Ett utvecklat samarbete med patientorganisationer är angeläget eftersom de har storkunskap inom området och arrangerar utbildningar och konferenser.Utveckling av stödformerStöd till anhöriga finns i olika former: avlösning i hemmet, dagverksamhet, tillfälligt bo-ende, nätverk, tekniska hjälpmedel, utbildning, psykosocialt stöd och hemtjänst. Det är vik-tigt att man fortsätter att utveckla stödformer av alla slag – men framförallt att de erbjudstill alla som har behov. När det gäller yngre personer med demenssjukdom behövs det flerplatser inom dagverksamhet.Tydligare ansvarsfördelningFör att demenssjuka och deras anhöriga ska ha en fungerande vardag behövs klarare lokalariktlinjer och tydligare rollfördelning mellan landsting och kommuner. Att det finns flerahuvudmän som ansvarar för patientgruppen är ett stort problem. Vård och omsorgsgivareinom Stockholms läns landsting och kommunerna behöver tillsammans arbeta fram en an-svarsfördelning förtydligad i lokala vårdprogram. Exempelvis bör stödet till anhöriga fin-nas med i uppdraget både för minnesmottagningarna och husläkarverksamheten så attverksamheterna stödjer varandra och vårdkedjan hänger ihop. Samordnande kontaktpersonSamtliga parter i vård- och omsorgsarbetet kring personer med demens och även anhöriga,efterlyser en samordnande kontaktperson som kan fungera som "spindeln i nätet", somskulle kunna sköta kontakterna mellan primärvård/landsting och omsorg/kommun. En mo-dell finns i Kalmar där distriktssjuksköterskan är processansvarig för utredningen. Ävenanhörigstöd ligger under distriktssköterskans ansvar, vilket innebär att hon anordnar utbild-ningsträffar för anhöriga. Innehållet i stödet omfattas av medicinsk information, bemötandeoch andra råd och tips. Vid utbildningsträffarna deltar även kommunens handläggare somger information om hjälpinsatserna och olika boendeformer. Gemensam vård och omsorgsplanering samt årlig uppföljningSedan 2010 finns bestämmelser i hälso- och sjukvårdslagen och socialtjänstlagen att närdet finns behov ska en gemensam individuell plan upprättas för personer med psykiskafunktionsnedsättningar. Planeringen ska göras tillsammans med patient och anhöriga för attbehoven av både hälso- och sjukvård och socialtjänst ska tillgodoses. Dokumentet skaockså beskriva de olika insatser och vårdgivarnas ansvar.Hälso- och sjukvården och socialtjänsten bör minst en gång per år följa upp sjukdomensförlopp och anpassa läkemedel, vård och omsorg. Då är det viktigt att föra ett enskilt sam-tal med den anhörige, dels för att följa upp om de beviljade stödformerna är tillräckliga,dels för att kontrollera om den anhöriga fortfarande har möjlighet och ork att vårda sin de-menssjuka närstående. Huruvida gemensamma individuella planer tas fram och årliga upp-följningar görs enligt ovan är okänt men mycket talar för att det inte sker i tillräckligomfattning.Förbättrad kompetensTrygghet är en viktig faktor i omhändertagandet av personer med demens och deras anhö-riga. Anhöriga önskar mer information, och att vård och omsorg utförs av yrkeskunnig per-sonal i sjukdomens alla skeden – från diagnos till palliativ vård, en period som ofta löperöver 5–7 år.Fortbildning för läkare, distriktssköterskor, arbetsterapeuter, biståndshandläggare, vård-och hemtjänstpersonal och andra är också nödvändigt för att öka förståelsen och kunskapenom det komplexa sjukdomstillstånd som demens är, och hur det drabbar de anhöriga. Ökad kompetens för alla yrkesgrupper som kommer i kontakt med demenssjuka, inomsåväl kommun som landsting, innebär att man kan identifiera risker på ett tidigt stadium.En effekt av detta blir att förhindrar kostsamma åtgärder senare i sjukdomsförloppet samtatt livskvaliteten hos patienterna och deras anhöriga förbättras. Fungerande hemvårdFör många äldre är stödet från en anhörig en förutsättning för att kunna bo kvar i det ordi-nära boendet.8För att anhöriga ska klara av detta krävande och mångfacetterande uppdragmåste det finnas ett utvecklat stöd från såväl landsting som kommun, vilket förutsätter ettfungerande samarbete mellan geriatrik, primärvård och äldreomsorg.9Hemvården bör ut-formas i samarbete med de anhöriga som är "experterna" i fråga om vilka behov närstå-ende i fråga har. För att erbjuda personer med demens och deras anhöriga bättre stöd skulleen utökad satsning på uppsökande verksamhet vara önskvärd, där de olika huvudmännentar ett gemensamt ansvar. Önskvärt är också att det skulle finnas ett fungerande multipro-fessionellt team för att möta behoven. Ett team som är mobilt och kan uppsöka den som ärsjuk, och inte tvärtom. Adekvat stöd och ersättningStödinsatser till anhöriga har en positiv effekt på deras hälsa vilket minskar landstingetskostnader på sikt.10Anhöriga som uttrycker önskan om att vårda närstående med demens-sjukdom behöver genom samhällets försorg få förutsättningar för detta, såväl i fråga omeko- nomi som hjälp med vård- och omsorgsinsatser till den sjuke. Inte minst med tanke påatt lejonparten av anhörigvårdarna själva tillhör gruppen äldre. Olika typer av tekniskahjälpmedel kan vara till stor hjälp för den anhöriga och bevara den demenssjuke personensoberoende så länge som möjligt. Idag förskrivs sällan sådana hjälpmedel för den här grup-pen. KvalitetsindikatorerAntalet nationella indikatorer för vård och omsorg för personer med demenssjukdom är 14stycken. Merparten är så kallade utvecklingsindikatorer - det vill säga indikatorer som inteär möjliga att kontinuerligt följa med de uppföljningssystem som finns i dagsläget.11Ingenindikator tar upp stödet till anhöriga. Det är önskvärt att man i framtiden skapar indikatoreräven för anhörigstöd. Registrering i och användningen av kvalitetsregistret SveDem bordegöras i större sträckning av vårdgivarna än som sker idag. Ekonomiska konsekvenserDe anhöriga svarar för den helt dominerande delen av närståendes omsorg och omvårdnadi eget boende. Att sjukvården ser anhöriga som en samarbetspartner och ger adekvat stöd ärpå sikt kostnadseffektivt för landstingets del. Konsekvenserna av otillräckligt stöd kan ledatill ökade kostnader och vårdkonsumtion för såväl patienter som anhöriga.

Regeringen har gett Socialstyrelsen i uppdrag att utarbeta en vägledning till stöd för
tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till personer
som vårdar eller stödjer närstående. Som ett led i vägledningsarbetet ger Socialstyrelsen
ut meddelandeblad och broschyrer, tillhandahåller information och publicerar artiklar på
hemsidan "Fokus på anhöriga" samt medverkar vid nationella och regionala konferenser.

Regeringen har gett Socialstyrelsen i uppdrag att utarbeta en vägledning till stöd för
tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till personer
som vårdar eller stödjer närstående. Som ett led i vägledningsarbetet ger Socialstyrelsen
ut meddelandeblad och broschyrer, tillhandahåller information och publicerar artiklar på
hemsidan "Fokus på anhöriga" samt medverkar vid nationella och regionala konferenser.

Våren 2006 kartlades verksamheter i Sverige som arbetar för att få män som
utövar våld att upphöra med sin våldsutövning mot kvinnor och barn, samt
verksamheter som riktar sig till flickor och pojkar som i sin familj upplever
mäns våld mot kvinnor. Med anledning av en nationell utvärdering av
stödinsatser till barn, vilken pågår 2008 till 2011, genomfördes en förnyad
kartläggning sommaren 2010, av verksamheter riktade till barn som upplever
våld. För denna ansvarade docent Maria Eriksson, Sociologiska institutionen,
Uppsala universitet. Forskningsassistent Marta Wycichowska deltog
också i arbetet. Den här rapporten redovisar resultatet av den förnyade kartläggningen
och beskriver förändringar på fältet under perioden 2006 till
2010.
2010 års kartläggning har begränsats till de typer av organisationer som
utifrån 2006 års rapport kan antas vara de mest relevanta när det handlar om
stöd till barn som upplevt våld: kommunala verksamheter, kvinnojourer samt
barn- och ungdomspsykiatriska mottagningar. Kvinnojourerna respektive
barn- och ungdomspsykiatriska mottagningar fick en enkät som motsvarar
den som skickades ut 2006. Verksamheter i kommunal regi kartlades genom
en genomgång av kommunernas hemsidor. När det gäller vissa nytillkomna
verksamheter har informationen från hemsidan kompletterats med telefonintervjuer.
För att lokalisera verksamheter har viss information också inhämtats
via Länsstyrelserna, forsknings- och projektfinansiärer (som Allmänna
Arvsfonden) samt genom generella sökningar på internet och personliga
kontakter på fältet.
Kartläggningen visar att stöd till barn som upplevt våld är ett fält som
fortfarande expanderar. Antalet identifierade verksamheter har ökat och i
den länsvisa förteckning över verksamheter som finns i rapportens bilaga 1
återfinns totalt 132 verksamheter (jämfört med 87 år 2006). Det är framförallt
bland kommunerna ökningen kan ses och kartläggningen tyder på att det
idag är minst 147 av landets kommuner som själva erbjuder stöd till barn
som upplevt våld. Kartläggningen visar också att det här är ett fält som konsoliderats,
på så sätt att flera små aktörer (i första hand kommuner) slagit sig
samman och etablerat gemensamma verksamheter. Vidare är det fler verksamheter
erbjuder både individuella insatser och grupper för barn, 46 jämfört
med 26 år 2006. Det går att urskilja några nyheter på fältet, i form av nya
modeller för barngrupper, och för terapi för barn och deras omsorgspersoner.
Nyheterna till trots är dock de övergripande tendenserna i stöd och hjälp till
10
barn som upplevt våld densamma 2010 som de var 2006: den vanligaste
formen av insats riktad direkt till barnen tycks fortfarande vara individuella
samtal, oftast benämnda krissamtal, och det är fortfarande oklart i vilken
grad det finns specialisthjälp för de barn som behöver annan hjälp än individuella
krissamtal eller en pedagogisk barngrupp.
Det har varit möjligt att hitta uppgifter om individuella samtal för barn
från minst 112 verksamheter (jämfört med 67 år 2006). Även denna gång är
det så att det i de flesta fall finns uppgifter om att det här arbetet följer eller
inspirerats av Rädda Barnens arbetsmodell Trappan. Det gäller både kommuner
och frivilligorganisationer. När det gäller grupper för barn har de
också blivit vanligare, jämfört med läget 2006. Uppgifter om grupper för
barn finns från 61 verksamheter (jämfört med 41 år 2006). Fortfarande dominerar
modeller för pedagogiska och jag-stödjande grupper vilka ursprungligen
utarbetats för grupper för barn till föräldrar som missbrukar alkohol.
Det går dock att se en del nyheter på fältet. Internationellt har särskilda program
för barn som upplever mäns våld mot kvinnor har funnits sedan åtminstone
15 år tillbaka. Den stora skillnaden mellan dessa program och de
modeller som ligger till grund för de pedagogiska och jag-stödjande grupperna
i Sverige är att de internationella mycket tydligare sätter fokus på våld
och skydd. Ett av dessa våldsfokuserade program finns nu också översatt till
svenska: ett kanadensiskt grupprogram riktat till förskolebarn respektive
skolbarn. Till programmet hör också en insats till barnens mammor. Ytterligare
en ny våldsfokuserad modell för arbetet i barngrupper är en modell för
terapigrupper för barn hämtad från Alternativ til Vold i Oslo (ATV). Den är
utformad för barn i skolåldern eller äldre och även här är rekommendationen
att arbetet med barnen åtföljs med en parallell insats riktad till mammorna
och om möjligt även till papporna. Vid Alla Kvinnors Hus i Stockholm har
ytterligare en ny typ av grupp utvecklats, som ett komplement till befintliga
gruppinsatser. I ett projekt med medel från Allmänna Arvsfonden har boende
barn erbjudits dramagrupp. Den här typen av grupp har fokus på konsekvenserna
av våldet, snarare än känslomässig bearbetning och våldet "i sig".
Kartläggningen från 2006 visade att skyddade boenden för våldsutsatta
kvinnor och deras barn erbjuder ytterligare interventioner för barn som går
utöver individuella samtal och grupp. Det är både ett miljöterapeutiskt inriktat
arbete och stöd i vardagen så att barnen får en rimlig tillvaro under tiden
på det skyddade boendet. Redan 2006 stod det klart att de frivilliga kvinnojourerna
uppmärksammar barn i allt högre utsträckning. Enligt enkätsvaren
2010 kommer den ökande uppmärksamheten också till uttryck i att kvinnojourerna
satsar mer resurser på barn. Av enkäten framgår att 74 av de 97
svarande jourerna har anställd personal (jämfört med 57 av 70 svarande jourer
2006) och att av dessa har 31 (42 procent) personal med särskilt ansvar
för att arbeta med barn/unga som upplevt våld (jämfört med 6 jourer, 11
procent 2006).
11
När det gäller specialisthjälp till barn som upplevt våld visade 2006 års
enkät till barn- och ungdomspsykiatriska mottagningar att det varierade avsevärt
från mottagning till mottagning hur man inom barn- och ungdomspsykiatrin
ser på frågan om barn som lever med våld i sin familj. Därigenom
blir barns möjligheter att få kvalificerad hjälp från barn- och ungdomspsykiatrin
väldigt olika beroende på var i landet de bor. Man kunde också notera
att när det gäller barn- och ungdomspsykiatrins särskilda insatser för barn
som upplever mäns våld mot kvinnor framkom att de flesta använde sig av
Rädda Barnens material Trappan. Det är samma material och modell som
används av socialtjänsten och frivilligorganisationerna. Med tanke på att
barn som söker hjälp hos BUP många gånger är barn med behov som socialtjänsten
och frivilligorganisationerna inte anser sig ha kompetens att tillgodose,
var dessa svar något som i sin tur väckte frågan i vilken grad barn- och
ungdomspsykiatrin i landets olika delar reellt möter behoven av en specialkompetens
som går utöver den som finns hos socialtjänst och frivilligorganisationer.
Den bild som förmedlas i 2010 års enkätsvar ligger på många sätt
nära den tidigare enkätens resultat. Sammantaget kan även svaren från 2010
års enkät tolkas som att BUP endast i undantagsfall erbjuder en insats inriktad
på barn som upplever mäns våld mot kvinnor. Det finns dock några nyheter
i enkäten. En av dessa är behandlingsmodellen Traumafokuserad kognitiv
beteendeterapi (TF-CBT), och just när det gäller TF-CBT pågår också
ett utvecklingsarbete på området.
När det gäller de perspektiv som interventionsmodellerna bygger på dominerar
fortfarande ett utvecklingsperspektiv på barn, där barn blir objekt för
vuxnas ansvar, snarare än aktörer med rätt till delaktighet och medbestämmande,
liksom könsblinda perspektiv där individuell avvikelse står i fokus.
Nyheterna på området skulle på sikt kunna bidra till en breddning av perspektiven.
Det är dock ännu för tidigt att dra några säkra slutsatser om en
sådan utveckling.

Sedan den 1 juli 2009 ska socialnämnden enligt socialtjänstlagen erbjuda stöd till personer som vårdar eller stödjer en anhörig. Genom enkäter till socialtjänstens verksamheter och kontakter på alla nivåer samt med anhörig-, patient- och frivilligorganisationer har följande bild av hur kommunerna tillämpar bestämmelsen framkommit.

Bristen på dokumentation gör det svårt att få en bild av hur den nya bestämmelsen tillämpas, omfattningen av det stöd som ges och hur stödet utvecklas. Utvecklingen av stödet till anhöriga till personer med långvarig sjukdom eller personer med funktionshinder har kommunerna inte prioriterat tillräckligt högt. Därför är det på dessa områden som Socialstyrelsen kommer att inrikta sitt vägledningsarbete.

Äldreprägeln består

Fortfarande finns en tydlig äldreprägel i arbetet med att erbjuda stöd till anhöriga, eftersom kommunerna i första hand ger stöd till anhöriga till äldre. Arbetet, organisationen, utbudet och innehållet i kommunernas stöd till anhöriga har sina rötter inom vården och omsorgen om de äldre.

Arbetet med att stödja anhöriga är inte integrerat i alla socialtjänstens verksamheter. Stödet håller på att utvecklas, men mycket arbete återstår med att ge stöd till anhöriga till personer med långvarig sjukdom eller yngre personer med funktionshinder.

Kulturskillnader i synen på anhöriga

Man kan tala om olika kulturer i synen på och sättet att förhålla sig till anhöriga i socialtjänsten. De olika verksamheterna har olika och ibland vitt skilda uppdrag och historia. De möter anhöriga i skilda livssituationer och med olika levnadsförhållanden och därmed olika behov av stöd och hjälp.

Anhörigstöd i individ- och familjeomsorgen innebär till exempel ofta något annat än stöd för anhöriga till äldre. På samma sätt har anhöriga till personer med långvarig sjukdom eller funktionshinder ofta andra livsvillkor än anhöriga till äldre, och därmed andra behov av stöd och hjälp.

Brist på data

Det är svårt att få en bild av hur den nya bestämmelsen tillämpas, och av hur stödet till anhöriga som vårdar eller stödjer närstående utvecklas. Problemet är att socialtjänstens behovsprövade insatser dokumenteras på ett sådant sätt att man inte kan identifiera om insatsen beviljas som ett stöd till den anhöriga eller inte. Det är otillfredsställande att Socialstyrelsen inte kan beskriva hur den nya bestämmelsen påverkar enskilda anhöriga. En stor del av socialtjänstens insatser för anhöriga utgörs av icke behovsprövade insatser, s.k. allmänt inriktad service. Det saknas dock för närvarande underlag för att kunna beskriva omfattningen av de serviceinsatser som ges som stöd till anhöriga.

Slutsatser

Socialstyrelsen anser att kommunerna inte har prioriterat att utveckla stöd för anhöriga till långvarigt sjuka och personer med funktionshinder tillräckligt högt.
Socialtjänstens verksamheter behöver fortsätta utveckla arbetet om hur man bemöter anhöriga och se över vilken delaktighet och därmed vilket inflytande de erbjuder anhöriga, särskilt när de handlägger den närståendes ansökan om hjälp.
Många anhöriga har en långvarig kontakt med både hälso- och sjukvården och socialtjänsten. Därför är det nödvändigt att huvudmännen utvecklar kontakterna och rutinerna för samarbete i stödet till anhöriga.
Socialstyrelsen konstaterar att stödet till anhöriga till äldre är mest utvecklat. Socialstyrelsen kommer därför att inrikta sitt vägledningsarbete på utvecklingen av stödet till anhöriga till personer med långvarig sjukdom eller personer med funktionshinder.
Socialstyrelsen kommer att utveckla dialogen med patient-, anhörig- och frivilligorganisationer, för att ta vara på organisationernas kunskaper och erfarenheter i arbetet med att utveckla stödet till anhöriga.
Socialstyrelsen konstaterar att det saknas underlag för att beskriva omfattningen av stödet till anhöriga. Socialstyrelsen avser därför att påbörja arbetet med att skapa ett system, för att kunna samla in uppgifter om serviceinsatser till stöd för anhöriga.

Objective

The aim of this study was to examine what family caregivers of persons with dementia perceive as important types of support/services in relation to experienced negative impact (NI) due to the caregiver situation, and to investigate if caregivers receive the support/services perceived as important.
Method

The study was based on the Swedish part of the EUROFAMCARE project and included 110 caregivers of persons with dementia. Data were collected primarily through structured telephone interviews. The caregivers were divided into two groups, a higher NI group and a lower NI group, based on the NI scale from the COPE index.
Results

Getting information and having someone to talk to were perceived as very important types of support/services by the highest proportion of caregivers in both groups. Data indicated only one significant difference; a higher proportion of caregivers in the higher NI group reported being able to participate in activities outside of caring as very important. There was also an indication that a higher proportion of caregivers in the lower NI group perceived information about the disease as very important. Support/services perceived as important by the caregivers were received both to a high and a low degree.
Conclusion

The results from this study suggest that there is almost no difference between groups of caregivers experiencing higher and lower NI regarding their perception of what are important types of support/services. The caregivers rated different types of support/services within the areas of information, relief and counselling as very important. Copyright © 2009 John Wiley & Sons, Ltd.

Background Mood and anxiety disorders, and problems with self-harm are significant and serious issues that are common in young people in the Criminal Justice System. Aims To examine whether interventions relevant to young offenders with mood or anxiety disorders, or problems with self-harm are effective. Method Systematic review and meta-analysis of data from randomised controlled trials relevant to young offenders experiencing these problems. Results An exhaustive search of the worldwide literature (published and unpublished) yielded 10 studies suitable for inclusion in this review. Meta-analysis of data from three studies (with a total population of 171 individuals) revealed that group-based Cognitive Behaviour Therapy (CBT) may help to reduce symptoms of depression in young offenders. Conclusions These preliminary findings suggest that group-based CBT may be useful for young offenders with such mental health problems, but larger high quality RCTs are now needed to bolster the evidence-base.

The overall aim of the thesis, with four empirical studies, was to test the applicability of a functional approach in investigating social competence of children in need of special support within the preschool context. The main theoretical framework was systems theory. Study I and II investigated preschool teachers' definitions of children in need of special support and social competence respectively. Study III was a prevalence study investigating the number of children in need of special support based on traditional disability categories and functional difficulties. In study IV the social competence of children perceived to be in need of special support based on traditional categories and functional difficulties was compared using an observational method. The results in study I showed that teachers adopt either a child perspective or an organizational perspective in defining children in need of special support. The child perspective was related to a greater number of children in need of special support in the preschools, indicating that in preschools with several children in need of special support, teachers are more prone on seeing the needs of individual children, as opposed to the needs of the organisation. Study II found that teachers define social competence in young children in terms of intrapersonal skills, or as interpersonal relations. Study III found that the majority of children in need of special support are undiagnosed children with functional difficulties related to speech- and language and peer interaction. Study IV found similar profiles of social competence between diagnosed children and undiagnosed children perceived to be in need of special support. Overall, the results yielded support for adopting a functional approach in studying the social competence of children in need of special support.

In recent years in Italy, population ageing, rising female labour-market participation, and the restructuring of the welfare state have combined to create increased demand for long-term care services for frail and dependent older people. The rising demand has increasingly been met by immigrant women of different nationalities, and to a lesser extent immigrant men, who are hired to provide individualised care in people's own homes and other private settings. While there have been many studies of this growing phenomenon, very little attention has been paid to the reasons that bring family care-givers to choose this care-support option. To begin to fill the gap, this paper reports the finding of a qualitative study of 26 family members who were caring for a disabled elder. Semi-structured interviews lasting between 60 and 100 minutes and that covered various aspects of long-term care in family households were conducted. The participants' responses indicate that they did not choose immigrant home eldercare assistants solely for economic reasons but also to be consistent with cultural, moral and traditional understandings of family responsibilities and care. They also provide valuable findings and insights into Italian attitudes towards the welfare state and the care-labour market. While the wealthiest respondent declared a clear predilection for the free-market and a desire to bypass the state, the majority of the respondents advocated a stronger role of the welfare state in helping people cope with the increased burden of long-term care.

In recent years in Italy, population ageing, rising female labour-market partici-pation, and the restructuring of the welfare state have combined to create in-creased demand for long-term care services for frail and dependent older people.The rising demand has increasingly been met by immigrant women of differentnationalities, and to a lesser extent immigrant men, who are hired to provideindividualised care in people's own homes and other private settings. While therehave been many studies of this growing phenomenon, very little attention hasbeen paid to the reasons that bring family care-givers to choose this care-supportoption. To begin to fill the gap, this paper reports the finding of a qualitative studyof 26 family members who were caring for a disabled elder. Semi-structuredinterviews lasting between 60 and 100 minutes and that covered various aspects of long-term care in family households were conducted. The participants' responsesindicate that they did not choose immigrant home eldercare assistants solely foreconomic reasons but also to be consistent with cultural, moral and traditionalunderstandings of family responsibilities and care. They also provide valuablefindings and insights into Italian attitudes towards the welfare state and the care-labour market. While the wealthiest respondent declared a clear predilection forthe free-market and a desire to bypass the state, the majority of the respondentsadvocated a stronger role of the welfare state in helping people cope with theincreased burden of long-term care.

The interface between formal (public) and informal help for older people is unclear and subject to change in many welfare states. Our aim in this study was to contribute to increased understanding of the experiences of older people, their next of kin, and the care managers from the municipalities in the process of negotiating help in the everyday lives of older people who can no longer manage on their own. We took a qualitative approach, using qualitative interviews as the main data collection method. The results revealed that the different actors had contrary interests that made it difficult for all parties to be content with the outcome of the negotiations. The everyday lives of dependent older people and their next of kin are strongly affected by the conditions of formal eldercare.

Purpose: Few studies have addressed the effects of caregiver interventions on the costs of care for the care recipient. This study evaluated the effects of a caregiver education and support group delivered via the telephone on care recipient health care utilization and cost. Design and Methods: The Telehealth Education Program (TEP) is a manualized program of education and support designed for caregivers of veterans with moderate-to-severe dementia. One hundred fifty-eight spousal caregivers were randomly assigned to either the ten 1-hr sessions of TEP or the usual care (UC). Health care utilization and cost data were extracted from veterans Information System Technology Architecture databases and included outpatient, inpatient, and nursing home data within the VA. Results: Total health care cost data showed a significant (p = .039) average cost savings of $2,768 per patient at 6 months for TEP as compared with UC, but these were not maintained at 1 year. All costs included in the total costs measure contributed to this difference. Inpatient, outpatient, and nursing home costs were all assessed separately, but only nursing home costs reached significance (p = .009), with a savings of $1,057 per patient at 6 months. Implications: The TEP caregiver intervention resulted in short-term cost savings for veteran care recipients. Future studies of caregiver interventions should examine their effects on costs of care for the care recipients in addition to their effects on caregiver outcomes.

This study examines the effects of child abuse and domestic violence exposure in childhood on adolescent internalizing and externalizing behaviors. Data for this analysis are from the Lehigh Longitudinal Study, a prospective study of 457 youth addressing outcomes of family violence and resilience in individuals and families. Results show that child abuse, domestic violence, and both in combination (i.e., dual exposure) increase a child's risk for internalizing and externalizing outcomes in adolescence. When accounting for risk factors associated with additional stressors in the family and surrounding environment, only those children with dual exposure had an elevated risk of the tested outcomes compared to non-exposed youth. However, while there were some observable differences in the prediction of outcomes for children with dual exposure compared to those with single exposure (i.e., abuse only or exposure to domestic violence only), these difference were not statistically significant. Analyses showed that the effects of exposure for boys and girls are statistically comparable.

Gothenburg Monographs in Linguistics 42; Institutionen för filosofi, lingvistik och vetenskapsteori

An activity-based vocabulary for Voice Output Communication Aids (VOCAs) was designed and evaluated through a user-centred, iterative design process, using expressions from the Gothenburg Spoken Language Corpus as well as other recorded, natural conversations. The growth and development of the vocabulary, called Phrases, was closely linked to its evaluation. The iterative design process included prototyping, collaboration with users, and modifications to the different versions of Phrases. The aims of the thesis were to investigate and visualise what goes on in interactions involving VOCAs, investigate the utility of a spoken language corpus in constructing AAC vocabulary, to evaluate the usability of Phrases, and to compare the effectiveness and efficiency of phrase creation to that of phrase selection. Four young adults with cerebral palsy, who used Augmentative and Alternative Communication (AAC), took part in the evaluation, as did sixty adults without speech impairments. The Phrases vocabulary was primarily built around pre-stored expressions for shop interactions and general quickfire expressions, including greetings, acknowledgements, feedback and expressions for communication management. It was tested in real and role-played shopping activities, and in an experiment. The results showed that phrase selection under certain circumstances can be faster than phrase creation, and that pre-stored phrases can enhance both the speed and enjoyment of VOCA-mediated conversations, providing that the users have learned where to find the expressions. The quickfire section was appreciated by all participants, but the activity shopping turned out to be of lesser importance to the four participants using AAC than was presumed from the beginning. Using a VOCA in a service encounter such as shopping turned out to be a complex undertaking for individuals with severe motor impairments. A model from Cultural-Historical Activity Theory provided useful insights into the contributing factors. The evaluations of the second version of Phrases gave valuable suggestions for the modification of future versions, such as making the activity structure more transparent, keeping phrases which were used while removing others, and adding new activities. Sammanfattning på svenska: Avhandlingen "The Growth of Phrases. User-centred Design for Activity-based Voice Output Communication Aids" presenterar och analyserar vokabulär för talande samtalshjälpmedel som designats och utvärderats genom en användarcentrerad, iterativ designprocess. Vokabuläret, som kallas Phrases (fraser), är baserat på yttranden från Göteborgs Talspråkskorpus och andra inspelningar av naturliga samtal. Den iterativa designprocessen bestod av prototyputveckling, successiv utvärdering, samarbete med användare samt modifieringar av de olika versionerna av Phrases. Målen för avhandlingen var att undersöka och visualisera vad som sker i samspel där talande samtalshjälpmedel finns med, undersöka nyttan av en talspråkskorpus för att skapa vokabulär för AKK (Alternativ och Kompletterande Kommunikation), utvärdera användbarheten hos Phrases och att undersöka hur verkningsfullt och effektivt det är att välja bland fraser jämfört med att själv skapa dem. Fyra unga vuxna med cerebral pares, som använde AKK, och sextio vuxna personer utan talsvårigheter deltog i utvärderingen. Vokabuläret Phrases var främst uppbyggt kring färdiga uttryck för att samtala i affär, kompletterade med allmänna snabbuttryck ("quickfires") för att hälsa, tacka, ge återkoppling och hantera kommunikationen. Phrases testades i verkliga affärssituationer och i rollspel samt i ett experiment. Resultaten visade att det under vissa omständligheter kan vara snabbare att använda färdiga fraser än att skapa dem ord för ord, och att färdiga fraser kan öka både hastigheten och nöjet i att använda samtalshjälpmedel, förutsatt att användarna har lärt sig var de ska hitta uttrycken. Modulen med snabbuttryck uppskattades av alla deltagare, men själva aktiviteten att handla i affär var inte så viktig som förväntat för de fyra AKK-användarna. Att som kund använda samtalshjälpmedel i en affär påverkades i praktiken av många faktorer. För att undersöka hur dessa hängde samman användes en modell från kulturhistorisk aktivitetsteori som gav värdefulla insikter. Utvärderingen av version nummer två av Phrases pekade mot att aktivitetsstrukturen behöver göras ännu tydligare i framtida versioner. Flertalet fraser bör bibehållas, men somliga kan tas bort och nya aktiviteter bör läggas till.

This study examined depression and externalizing problems of children in foster care using a subsample of data (n =362) from the National Survey of Child and Adolescent Well-Being. Our findings indicated that more frequent contact with the biological mother was marginally associated with lower levels depression and significantly associated with lower externalizing problem behaviors. The association with externalizing problem behavior was significant even after controlling for gender and exposure to violence. Further, differences with regard to gender were revealed. Specifically, girls had higher depression scores than boys even after controlling for exposure to violence. Results suggest that supporting frequent, consistent, visitation may impact the levels of depression and externalizing programs children in foster care exhibit.

The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10-24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92. Higher scores on the YACS related to higher youth age and several caregiving context variables (i.e. household type [single or dual-parent household], relationship with care-recipient and perceived choice in caregiving). Higher scores on the YACS also related to care-recipient illness/disability variables (onset, functional impairment, prognosis, predictability and illness/disability type). Strong positive correlations between the YACS and a conceptually related measure of young caregiving experiences provided good convergent validity data. Criterion validity was established with evidence that the YACS predicted youth adjustment in the domains of health and prosocial behaviour.

The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10-24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92. Higher scores on the YACS related to higher youth age and several caregiving context variables (i.e. household type [single or dual-parent household], relationship with care-recipient and perceived choice in caregiving). Higher scores on the YACS also related to care-recipient illness/disability variables (onset, functional impairment, prognosis, predictability and illness/disability type). Strong positive correlations between the YACS and a conceptually related measure of young caregiving experiences provided good convergent validity data. Criterion validity was established with evidence that the YACS predicted youth adjustment in the domains of health and prosocial behaviour. (PsycINFO Database Record (c) 2012 APA, all rights reserved) (journal abstract)

OBJECTIVE:
To examine the co-occurrence of witnessing partner violence with child maltreatment and other forms of victimization.
METHOD:
Data are from the National Survey of Children's Exposure to Violence (NatSCEV), a nationally representative telephone survey of the victimization experiences of 4,549 youth aged 0-17.
RESULTS:
Witnessing partner violence (WPV) is very closely associated with several forms of maltreatment and exposure to other forms of family violence in this sample, with adjusted OR ranging from 3.88 to 9.15. WPV is also significantly associated with a wide variety of other forms of victimization, with OR ranging from 1.43 to 7.32. More than 1/3 (33.9%) of youth who witnessed partner violence had also been maltreated in the past year, compared with 8.6% of non-witnesses. For lifetime data, more than half (56.8%) of WPV youth had also been maltreated. Neglect and custodial interference were most closely associated with WPV.
CONCLUSIONS:
These data support the poly-victimization model, indicating that many youth experience multiple forms of victimization. They also indicate that the various forms of family violence are especially closely linked.
PRACTICE IMPLICATIONS:
These results provide new urgency to calls to better integrate services to adult and child victims of family violence. For example, screening to identify the needs of child witnesses could be done in domestic violence shelters, and screening to identify the needs of adult victims could be done in child protective service settings.

This study addresses the extent to which insecure and disorganized attachments increase risk for externalizing problems using meta-analysis. From 69 samples (N = 5,947), the association between insecurity and externalizing problems was significant, d = 0.31 (95% CI: 0.23, 0.40). Larger effects were found for boys (d = 0.35), clinical samples (d = 0.49), and from observation-based outcome assessments (d = 0.58). Larger effects were found for attachment assessments other than the Strange Situation. Overall, disorganized children appeared at elevated risk (d = 0.34, 95% CI: 0.18, 0.50), with weaker effects for avoidance (d = 0.12, 95% CI: 0.03, 0.21) and resistance (d = 0.11, 95% CI: -0.04, 0.26). The results are discussed in terms of the potential significance of attachment for mental health.

This is a study about fairly ordinary situations in elder care: how staff deal with older people's influence, how staff talk about older people's complaints, how family members talk about elder mistreatment, and how older people act in order to exert influence in a nursing home. However ordinary, these are situations where relational power is accentuated, accomplished and able to be empirically explored. The aim here is to analyze power and influence as social phenomena in elder care. More specifically, the aims are 1) to analyze the political and bureaucratic frame in which older people have formal "voice" options; 2) to analyze staff members' "folk logic" as they respond to residents' complaints in Swedish nursing homes; 3) to analyze how family members of care recipients define and sustain claims of elder mistreatment; and 4) to ethnographically depict how older people's attempts at influence unfold in everyday interactions in a nursing home and how these attempts can be understood in the context of a "local routine culture."

Several kinds of empirical material have been used: 100 structured telephone interviews with local municipal officials, 13 qualitative interviews with nursing home staff, 21 interviews with family members of care recipients, and ethnographic data comprised of field notes and field-based interviews from five months of observation in a nursing home.

The findings demonstrate the difficulties of turning policies about older people's influence into practice. Yet, the main finding is not the "policy–practice gap" per se, but rather an understanding of how this gap is situationally shaped and maintained. The dissertation shows how the subtleties of actions and talk have powerful implications, and can constitute barriers to older people's influence. Two examples are the "rhetoric of trivialization" and a "local routine culture"; both can easily and quite inconspicuously restrict older people's autonomy and influence. A routine culture is a locally and situationally generated action repertoire and as such provides an understanding of how routines shape power relations in a nursing home. The findings also show how a rhetoric of trivialization can function as a power resource, through which older people's and family members' views are "made trivial" by the ways they are described and rhetorically treated by staff and local officials. Through the use of trivializing accounts, staff members legitimized their neglect of complaints and restrictions of older people's influence. The study argues that by recognizing how older people's influence is "made trivial," we gain an understanding of how to accomplish just the opposite. Local routines and accountability practices have a strong inertia, but the findings indicate that if actors reframe influence and complaints, they may substantially affect power relations in elder care.

This article considers, for a Canadian national probability sample of middle-aged women and
men, the question of how typical is the experience of being "caught in the middle" between being
the adult child of elderly parents and other roles. Three roles are examined: adult child, employed
worker, and parent (and a refinement of the parent role, being a parent of a co-resident child).
Occupancy in multiple roles is examined, followed by an investigation of the extent to which adults
in various role combinations actually assist older parents and whether those who provide frequent
help are also those "sandwiched" by competing commitments. The majority of middle-aged children
do not provide frequent help to parents. Notably, the highest proportion of daughters who assist
elderly parents are those in their fifties whose children are no longer co-resident. For both sons and
daughters, being "caught in the middle" is far from a typical experience in this cross-sectional
analysis.

The article analyses the different strands of public concern regarding children in the course of the 20th century, and the political process and the ideological constellation which led up to the UN Convention on the Rights of the Child. The ratification of the Convention and its political effects in northwestern Europe are analysed. Finally, a set of hypotheses are presented about likely determinants of the impact of the Convention in different parts of the world.

Avhandling

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.

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.

Att vara så övergiven, så oskyddad, så utsatt som detta barn som här beskrivs, ter sig för de flesta människor helt obegripligt. Varför såg ingen, varför förstod ingen - hur kunde detta fortgå?

Denna bok är en upprättelse - både för den kvinna som skrivit boken - och för andra som kämpar med känslan att "inte vara som andra" och mot människors oförmåga att förstå.

Professor Christopher Gillberg, som är Gunilla Gerlands läkare påpekar i sitt förord att boken handlar om "den hårfina gränsdragningen mellan friskt och sjukt, normalt och onormalt, icke diagnos - diagnos och om dolda handikapp". Han säger också att "Gunilla Gerlands eget språk öppnar många fler dörrar till förståelse än någon psykiaters fackjargong".

Factors were examined that are associated with
life satisfaction one year post-discharge for persons with a
spinal cord (SCI) or traumatic brain injury (TBI). Findings
show persons with SCI or TBI should be considered as two
distinct groups with regard to factors affecting life satisfaction
. Different strategies might be considered to affect either
group. Three psychosocial variables significantly increased
life satisfaction for persons with SCI: closeness to family, the
level of family activities, and blaming oneself for the injury.
For persons with TBI, total family satisfaction, blaming
oneself for the injury, being employed, being married, and
having memory and bowel independence significantly increased
life satisfaction . For persons with TBI, there was a
difference in the number of factors affecting life satisfaction
dependent on whether the persons blamed themselves or not.
Those who do not blame themselves show a greater number
of functional activities as indicators for their self-satisfaction.

Structural equation modeling was used to test a theoretical model in which family cohesion and family reframing coping were hypothesized as mediators between family drinking problems, multiple risk factors, negative life events, and child mental health (conduct disorder, depression, anxiety) in two-parent families. Family cohesion mediated the relationships of family drinking problems and negative life events to child conduct disorder and depression. Negative life events mediated the relationships of family drinking problems and family multiple risk to child conduct disorder. Family reframing coping did not function as a mediator nor was it related to child mental health when other factors were considered simultaneously. Results indicate that increasing family cohesion and reducing sources of stress within the family (negative life events) represent promising areas of interventions for children with problem-drinking parents.

This article provides a review of the current literature relating to child bereavement. The author also describes the setting up, running and evaluation of group work for bereaved children, and examines how these experiences can help to inform future best practice.

This paper describes the work undertaken with children and adolescents who have lost a significant person in their lives through death. The author works with the paediatric nurse member of a palliative care team running groups for children and adolescents who have been bereaved.

The aim of the project is to invite the child/adolescent as soon as possible after bereavement to participate in groups with others who are grieving. This groups allow participants to express their feelings through art, play and discussion in a safe and confidential environment.

It is hoped by using a preventative approach such as this, that the incidence of some of the results of unresolved childhood grief, such as failed relationships, depression and ill-health in adult life can be minimised.

Too many individuals still unnecessarily develop noise-induced hearing loss (NIHL). Interviews with men with NIHL showed their lack of awareness of noise as a threat to hearing. Also, most men were unwilling to acknowledge, or even denied, their hearing problems. Interviews with spouses of men with NIHL showed that the husband's hearing loss often caused misunderstandings and irritation within the family, which had a negative impact on the couple's intimate relationship. The purposes of our group rehabilitation programme, designed for men with NIHL and their spouses, were to give psychosocial support, adequate information and practice in effective coping strategies. A professional approach to treat men with NIHL is to take a patient-centered global perspective, which encourages the patient to identify, describe and acknowledge problems related to his impaired hearing. In the next step, the patient needs professional help to solve experienced hearing related problems. In this process of identification of and solution to problems, family involvement is important and vital.

Omsorgens skiftningar. Begreppet, vardagen, politiken, forskningen. R. Eliasson

Omsorgens skiftningar: Begreppet, vardagen, politiken, forskningen. R. Eliasson

This study reports on the use of the Perceived Social Support from Family and Perceived Social Support from Friends scales (Procidano & Heller, 1983) in a sample of adolescents at the initiation of outpatient treatment. Reliability and validity evidence is presented that generally replicates earlier studies utilizing these instruments. Multiple regression results are also reported, indicating that different combinations of perceived support from family and friends significantly predict psychosocial maturity levels in this clinical adolescent sample.

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

Abstract
BACKGROUND:
Two forms of alcoholism with distinct clinical features and mode of inheritance were first distinguished in the Stockholm Adoption Study. This involved a large sample of children born in Stockholm, Sweden, who were adopted at an early age and reared by nonrelatives. Type 1 alcoholism had adult onset and rapid progression of dependence without criminality, whereas type 2 had teenage onset of recurrent social and legal problems from alcohol abuse.
METHODS:
A replication study was carried out with 577 men and 660 women born in Gothenburg, Sweden, and adopted at an early age/by nonrelatives. The genetic and environmental backgrounds of the adoptees were classified by the exact procedures calibrated by discriminant analysis in the original study.
RESULTS:
Both type 2 and severe type 1 alcoholism were confirmed as independently heritable forms of alcoholism in male adoptees. The lifetime risk of severe alcoholism was increased 4-fold in adopted men with both genetic and environmental risk factors characteristic of type 1 alcoholism compared with the others (11.4% vs 3.0%). Neither genetic nor environmental risk factors for type 1 alcoholism by themselves were sufficient to cause alcoholism. In contrast, the risk of type 2 alcoholism was increased 6-fold in adopted sons with a type 2 genetic background compared with others; regardless of their postnatal environment (10.7% vs 2.0%). The sons with a type 2 genetic background in the replication sample had no excess of type 1 alcoholism, and vice versa. There was no increased risk of mild abuse in adopted men regardless of their genetic or environmental background.
CONCLUSION:
Type 1 and type 2 alcoholism are clinically distinct forms of alcoholism with causes that are independent but not mutually exclusive.

Children of alcoholics are commonly pictured as destined to become alcoholics themselves and to develop psychological problems. Research on children of alcoholics, however, has not strongly supported this impression. Rather, there is good reason to believe that children of alcoholics develop a checkerboard of strengths and weaknesses. Although the weaknesses are adequately explained by a traditional risk paradigm that we have called the damage model, the strengths are overlooked. The challenge model and its related vocabulary of strengths extends the damage model by including the possibility that children of alcoholics and other children of hardship can be resilient as well as vulnerable. The model offers a developmental vocabulary of resilience. The challenge model implies that psychiatrists should not launch exclusively a search for pathology in children of alcoholics, but should ask questions of patients more along the line of 'How is your struggle going?'

We assess evidence for gender differences across a range of relationships and consider whether the form and quality of these relationships affect the psychological functioning of men and women differently. Data from a national panel survey provide consistent evidence that men's and women's relationships differ. However, we find little evidence for the theoretical argument that women are more psychologically reactive than men to the quality of their relationships: Supportive relationships are associated with low levels of psychological distress, while strained relationships are associated with high levels of distress for women and for men. However, if women did not have higher levels of social involvement than men, they would exhibit even higher levels of distress relative to men than they currently do. We find little evidence for the assertion that men and women react to strained relationships in gender-specific ways--for example, with alcohol consumption versus depression.

How are the burdens and difficulties of caregiving balanced by the satisfactions experienced? * How do the demands of caregiving change over time and what are the policy and practice implications of such changes? * How is a balance achieved between the needs of the caregiver and the cared-for person? The importance of family (informal) care both in making a reality of community care policies and in helping to sustain the quality of life of people who require support to remain within their homes is beyond doubt. However, whilst a considerable research and practice literature has developed in this area over the last ten years there remains much to learn about caring at both conceptual and practice levels. There is in particular a need to develop more dynamic models which account for the changing nature of care over time and integrates the perspectives of carer, cared-for person and the formal service network. Based on several years research conducted by the authors, Understanding Family Care integrates a number of theories and perspectives in order to provide a more holistic understanding of the needs of carers. Emphasis is placed on providing a balanced picture which recognizes both the burdens and satisfactions of caring, in addition to the coping efforts that carers employ. A new longitudinal model of caring is described and the various stages and processes are explored. Although the focus is primarily on the carer the perspectives of the cared-for person are not ignored and a model is presented which aids the integration of disparate viewpoints. In addition to theoretical and methodological debates, implications for policy and practice are fully explored. Understanding Family Care is recommended reading for practitioners and managers in the health and social services, as well as students of social science, nursing, gerontology and social work.

Abstract
Cognitive appraisals and coping were examined in children, adolescents, and young adults (N = 134) faced with the diagnosis of cancer in a parent. All 3 age groups perceived low personal control and high external control over their parent's illness and used relatively little problem-focused coping. Adolescents and young adults reported more emotion-focused coping and dual-focused coping (both problem- and emotion-focused in intent) than did preadolescent children. Stage and prognosis of parent's cancer were related to appraisals of greater seriousness and stressfulness, and to more avoidance; however, only appraisals of stress were related to symptoms of anxiety-depression. Emotion-focused coping was related to greater avoidance and to higher symptoms of anxiety-depression; coping and control beliefs did not interact in their association with anxiety-depression symptoms.

Cognitive appraisals and coping were examined in children, adolescents, and young adults (N = 134) faced with the diagnosis of cancer in a parent. All 3 age groups perceived low personal control and high external control over their parent's illness and used relatively little problem-focused coping. Adolescents and young adults reported more emotion-focused coping and dual-focused coping (both problem- and emotion-focused in intent) than did preadolescent children. Stage and prognosis of parent's cancer were related to appraisals of greater seriousness and stressfulness, and to more avoidance; however, only appraisals of stress were related to symptoms of anxiety-depression. Emotion-focused coping was related to greater avoidance and to higher symptoms of anxiety-depression; coping and control beliefs did not interact in their association with anxiety-depression symptoms.

"Det här är en ovanlig bok skriven av en ovanlig man. Boken är ovanlig eftersom den vänder upp och ner på mycket av det vi vanligtvis tänker. Vi är så vana att tänka att problemen kommer inifrån och att förändringarna måste ske inne i den person som har problem. I den här boken sägs att framgångar och misslyckanden kommer utifrån och att förändringar sker först och främst genom det som omger oss - nämligen nätverket, språket, samtalen"

Fifty individuals who had lost a parent through death during adolescence were interviewed. All deaths had occurred within five years and not less than six months before the study was initiated. Half the participants had been members of a peer-support group in their secondary school. When asked to describe the types of help received during their bereavement and to rate the usefulness of such help, most participants reported that a peer (40 percent) or the surviving parent 28 percent had been "most helpful," primarily through emotionally supportive behavior. The results indicated that the source of support had often influenced the style of support and among adolescents who had participated in a peer-support the participants' perceptions of its value. The perceptions of support had not.

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.

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.

Finch discusses the nature of family life, especially concepts of duty, responsibility and obligation and how these factors operate in family and kin relationships.

327 adult outpatients (aged 18–62 yrs) completed the Stages of Change (SOC) Scales (E. A. McConnaughy et al; see record 1984-11195-001), the Millon Clinical Multiaxial Inventory, and a symptom checklist battery during intake. Results confirm the McConnaughy et al findings that the SOC Scales provide a reliable method of measuring SOC in psychotherapy. Four distinct stages (precontemplation, contemplation, action, and maintenance) and 8 stage profiles emerged. Despite differences between degree of psychopathology in the 2 studies' populations, the SOC emerged as a reliable phenomenon for clients entering therapy. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

The EDE is a semistructured interview which has been developed as a measure of the specific psychopathology of anorexia nervosa and bulimia nervosa. To establish its discriminant validity it was administered to 100 patients with anorexia nervosa or bulimia nervosa and to 42 controls. The two groups differed significantly on all items. Five subscales were derived on rational grounds and evaluated on the two populations. The alpha coefficients for each subscale indicated a satisfactory degree of internal consistency. The EDE provides clinicians and research workers with a detailed and comprehensive profile of the psychopathological features of patients with eating disorders.

This paper presents an overview of the empirical background to issues surrounding parents with learning disabilities. The paper considers historical perspectives, hereditary, fertility and family size, parental compliance, child abuse and neglect, and child outcomes. This is followed by a brief discussion and report on a parental skills model, parent training and some of the more recent qualitative research in this area. The paper concludes that parents with learning disabilities do have the right to have children. The important issue is whether everyone has the right to keep these children.

Boken består av tre delar där del I beskriver Historik - Lagar kring personlig assistans. Del II tar upp den personliga assistentens arbetssituation och beskriver hur det kan vara att arbeta som personlig assistent. Sista delen speglar brukarens situation, beskriver hur det kan upplevas att ta emot personlig assistans, arbetsgivaransvar samt hjälpmedelsberoende och hjälpmedelsansvar.

Boken kan användas i utbildning av personliga assistenter som ett diskussionsunderlag i utbildningssituationer för assistenter eller handläggare av assistans. Olika teman kan tas upp på personalmöten med brukare och assistenter, för att öka förståelsen för ett ömsesidigt arbete. Anhöriga till brukare eller brukaren själv kan få tips att tänka på inför uppläggning av assistans. En ökad förståelse för familjer och handikappade personers livssituation är också en avsikt med boken.

Denna bok kan överhuvudtaget användas som ett stöd för dem som på något sätt i sitt privatliv, arbete, studier eller yrkesutövande kommer i kontakt med personer som är berättigade till, eller arbetar som personlig assistent.

Objective: The relationships of perceived severity and responsibility attribution for positive and negative symptom behaviors to caregiver burden were investigated. Two types of burden were studied: objective burden (i.e., negative consequences such as physical problems, financial difficulties, and household tension), and subjective burden (i.e., emotional distress about disturbing behaviors). Method: Self-report measures were completed by 70 primary caregivers of persons with schizophrenia. Results: Subjective burden was related to both the severity of positive and negative symptom behaviors, whereas objective burden was related only to the severity of negative symptom behaviors. Responsibility attribution for negative symptom behaviors was related only to objective burden. Caregivers who perceived patients as being less responsible for their negative symptom behaviors reported higher levels of objective burden. The relationship between responsibility attribution for negative symptom behaviors and objective burden remained significant, even after controlling for the severity of negative symptom behaviors. Caregivers' perceptions of patients' responsibility for positive symptom behaviors were not related to objective burden. Conclusions: As expected, perceived severity of negative symptom behaviors was related to objective caregiver burden, whereas severity of positive symptom behaviors was not. These findings suggest that negative symptoms may have a greater impact on role functioning that positive symptoms, leading to greater burden. However, contrary to expectations, less responsibility attribution for negative symptom behaviors was related to higher levels of objective caregiver burden. Caregivers who perceive patients as incapable of altering their negative symptom behaviors and meeting certain role obligations may assume extra responsibilities, leading to higher levels of objective burden. The results indicate that there may be disadvantages for caregivers associated with assuming that patients have no control over their negative symptom behaviors.

In this study we examined the relationship between level of family burden adn extent of psychological distress among family members of 52 psychiatric patients. Our sample consisted of 31 chronic and 21 subchronic patients with a diagnosis of schizophrenia. The paper focused on the influence of psychosocial factors, such as the sense of personal control and coping strategies upon the extent and the perception of burden. The carers of chronic patients more frequently used a passive way of coping with everyday problems. Passivity and variability on behalf of the carers were significantly correlated with areas of objective burden. Consistent with a stress-process model, we found that the factor of mastery correlated significantly with family burden and distress scores. The findings of the study are discussed in the context of community family interventions.

Parents in methadone treatment were offered an experimental intervention, Focus on Families, designed to reduce their risk of relapse and their children's risk of substance use. Experimentally assigned volunteers participated in systematic group training in relapse prevention and parenting skills, and received home-based case management services. Immediate posttreatment outcome results reported here include analyses of covariance controlling for baseline measures. Analyses show experimental parents held more family meetings to discuss family fun, displayed stronger refusal/relapse coping skills, demonstrated stronger sense of self-efficacy in role-play situations, and had lower levels of opiate use than control subjects. No significant differences in family bonding, family conflict, or other measures of drug use were found. The utility of intervening with drug-addicted parents in methadone treatment is discussed in light of these findings.

Parents in methadone treatment were offered an experimental intervention, Focus on Families, designed to reduce their risk of relapse and their children's risk of substance use. Experimentally assigned volunteers participated in systematic group training in relapse prevention and parenting skills, and received home-based case management services. Immediate posttreatment outcome results reported here include analyses of covariance controlling for baseline measures. Analyses show experimental parents held more family meetings to discuss family fun, displayed stronger refusal/relapse coping skills, demonstrated stronger sense of self-efficacy in role-play situations, and had lower levels of opiate use than control subjects. No significant differences in family bonding, family conflict, or other measures of drug use were found. The utility of intervening with drug-addicted parents in methadone treatment is discussed in light of these findings.

Ideal for advanced undergraduate or graduate courses, or for professional use, the book is based on Bandura's theory that those with high self-efficacy expectancies - the belief that one can achieve what one sets out to do - are healthier, more effective, and generally more successful than those with low self-efficacy expectancies. He begins with a discussion of theory and method: what self-efficacy is and how it can be developed. Bandura then demonstrates how belief in one's capabilities affects development and psychosocial functioning during the course of life, underscoring provocative applications of this work to issues in education, health, psychopathology, athletics, business, and international affairs

Akad. Avh.

The purpose of this research was to examine the effects of peer bereavement support groups for parentally bereaved children, specifically in the areas of self-esteem, depression, and behavior. The sample was drawn from middle school students in a suburban school district who have experienced the death of a parent sometime during their life. Seventeen students were assigned to four groups. Pretesting and posttesting were done utilizing the Piers-Harris Self-Concept Scale, the Child Behavior Checklist (which includes a Teacher Report Form and a Youth Report Form), the Children's Depression Scale, and a Support Group Rating Scale to measure if participation affected sense of isolation, contributed to normalizing the death experience, and provided a comfortable environment in which to practice newly acquired coping skills. The posttest data from all but the Support Group Rating Scale was analyzed using a two-way analysis of variance (ANOVA). The Support Group Rating Scale was analyzed by comparing percentages of responses in the pretest and posttest data. The Support Group Rating Scale responses were also analyzed using nonparametric tests. The postintervention statistical analysis failed to show any statistically significant effect on any of the hypotheses except one item on the Support Group Rating Scale. This item (13) death with a participant's belief about his or her ability to cope with loss. Information evaluation of the Support Group Rating Scale and the evaluations indicate positive effect. Recommendations based on results are discussed.

In this study, chronicity in mental illness has been investigated as it is lived rather than how it might be conceptualized. Published first-hand accounts have provided the mechanism for direct access in coming to know the life of persons, their circumstances, and the meanings they associate with a life of persistent and enduring mental illness. These are unique and particular human experiences, and there are no empirical generalizations or law-like statements that can give such an understanding. Therefore the disclosure of meaning was sought through a hermeneutic-phenomenologic process. Four lifeworld existentials provide the framework for a combined description and interpretation of what it means to "live" chronic mental illness. The article concludes with a brief discussion of some implications for nursing practice, and commentary is made on the relevance of such insights to health care providers in both acute and community care settings.

Abstract
PROBLEM:
There is a lack of information about the bereavement experiences of adolescents living in poverty in the inner city.
SUBJECTS:
Eight bereaved adolescents (mean age = 13.5 girls, 3 boys), from poverty-level families, attending an inner city junior high school.
METHODS:
A descriptive design, using participant-observation in a semi-structured group setting, data were gathered using audiotape recordings of the eight group discussions.
FINDINGS:
Chaos and stress were major themes pervading each discussion session. Lack of family and social support, fear for their future, and avoidance as the major coping strategy were also themes of the study.
CONCLUSIONS:
Inner city adolescents need to be assessed for loss of significant others. Provision of mental health services in schools could provide intervention services to current and future problems.

Socialstyrelsen följer upp och utvärderar 1997:1

Augmentative and alternative communication (AAC) research and intervention for individuals with severe intellectual disabilities has advanced significantly in the last 5 years. This paper provides an integrated review of the current literature in this area, suggests future research directions, and delineates clinical and educational implications. The integration of behavioral and technological advances in the AAC field provides an optimistic outlook for the future development of functional communication systems for persons with severe intellectual disabilities.

Sixty-four children from 37 families with an alcoholic parent were compared with 80 children from 45 families that did not have an alcoholic parent on measures of intelligence, cognitive achievement, psychological and physical disorders, impulsivity-hyperactivity, social competence, learning problems, behavior problems, and self-esteem. On nine of 17 tests, the children of alcoholic parents scored less well than did the children of nonalcoholic parents, although both were within normal ranges. Factor analysis yielded significant differences between the two samples in emotional functioning and cognitive abilities and performance; marginally significant differences were found with respect to behavior problems.

Artikeln bygger på intervjuer med 15 barn till föräldrar med missbruksproblem.
Syfte: Att bidra till fördjupad förståelse av barns situation, när en förälders missbruk upphört.
Metod: En explorativ intervjustudie med barndomssociologi och symbolisk interaktionism som teoriram.
Resultat: Att missbruket upphört ger barn utrymme att känna efter hur de mår, att reflektera över missbrukets påverkan på deras hälsa och personlighet och att försöka förändra sig och sitt liv. Deras behov av bearbetning kan kvarstå lång tid. Det kan ta tid och vara svårt att bygga upp relationen till föräldern. Barn kan känna omsorgsansvar men också misstro och oro för återfall. Tonåringen kan dock se en möjlighet att gå vidare med sitt eget liv. Om missbruket bara upphör för en av två föräldrar med missbruksproblem är barn fortfarande berörda av missbruk.
Konklusion: Barns behov av bearbetning i relation till föräldrarna kan både ta och kvarstå lång tid oavsett om barnet bor med föräldern eller inte. Barnen kan både behöva hjälp för egen del och i relation till föräldern. Det ska vara påbjudet att professionella arbetar med ett familjeperspektiv, oavsett organisatoriska uppdelningar och oavsett om förälder och barn bor ihop eller ej. Det kräver strukturer, rutiner och resurser för samverkan över organisatoriska gränser.

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.

Kristina och Vivianne, två motpoler vars liv löper parallellt i Solgläntans korridorer när de hälsar på sina mödrar. Sida vid sida i demensens skugga söker de sig till varandra, i behov av ett outtalat stöd. Vivianne gömmer sin osynliga sorg bakom lager av glada färger och en väldigt lång halsduk. Fast besluten att alltid se det positiva i livet väljer hon att hålla fast i nuet och leva för stunden, tacksam för alla minnen hon får. Kristina försöker förtränga sitt förflutna, men hon är rädd för att glömma. Rädd att pärlhalsbandet av minnen ska gå sönder. Rädd att bli som sin mamma, som hon i hemlighet önskar livet ur. Men döden kommer aldrig i tid. Den kommer alltid för sent. Eller för tidigt. För alltid i mitt hjärta är en roman om en oväntad vänskap, som kommer att betyda så mycket mer än Kristina och Vivianne någonsin hade kunnat ana. En vänskap som kommer att sträcka sig genom både tid och rum.

It is a central feature of current Norwegian health and social care policy to see informal carers as active partners. However, research has revealed that carers often experience a lack of recognition by professionals. In 2010, the Norwegian Directorate of Health initiated a web-based competence-building programme (CBP) for health and social care practitioners aimed at facilitating collaboration with carers. The programme comprised case presentations, e-lectures, exercises and topics for discussion, and was introduced in 2012. It was flexible and free of charge. This article is based on a study (2012-2013) that followed the piloting of this CBP in four settings. The study aimed to explore factors that influenced the implementation of the programme and whether or not using it affected health and social care practitioners' attitudes and perceived capacity for collaboration with carers. The study employed a mixed-methods design. A questionnaire was distributed to all staff before and 5 months after the CBP was introduced, followed by focus group interviews with a sample of staff members and individual interviews with the leadership in the involved settings and those who introduced the programme. The quantitative data were analysed using descriptive statistics, which subsequently formed the basis for the focus group interviews. The qualitative data were analysed by means of content analysis. The programme's introduction was similar across all research settings. Nevertheless, whether or not it was adopted depended to a large extent on leadership commitment and engagement. In settings where the programme's use was monitored, supported by management and formed part of on-the-job training, there seemed to be a positive impact on staff attitudes concerning collaboration with carers. Participant staff reported that their awareness of, motivation for and confidence in collaboration with carers were all strengthened. In contrast, the programme was of minimal benefit in settings with low leadership engagement.

Self-determination theory (Deci & Ryan, 1985) posits that (a) people are inherently motivated to internalize the regulation of uninteresting though important activities; (b) there are two different processes through which such internalization can occur, resulting in qualitatively different styles of self-regulation; and (c) the social context influences which internalization process and regulatory style occur. The two types of internalization are introjection, which entails taking in a value or regulatory process but not accepting it as one's own, and integration, through which the regulation is assimilated with one's core sense of self. Introjection results in internally controlling regulation, whereas integration results in self-determination. An experiment supported our hypothesis that three facilitating contextual factors—namely, providing a meaningful rationale, acknowledging the behaver's feelings, and conveying choice—promote internalization, as evidenced by the subsequent self-regulation of behavior. This experiment also supported our expectation that when the social context supports self-determination, integration tends to occur, whereas when the context does not support self-determination, introjection tends to occur.

Rapporten redovisar resultatet av en forskningsstudie om familjestödjande samtal med barn och föräldrar i familjer där mamma och/eller pappa har psykiska problem som föranleder kontakt med vuxenpsykiatrin. Det studerade familjestödet bygger på ett utvecklat samarbete mellan en landstingsdriven vuxenpsykiatrisk mottagning och en familjeenhet inom socialtjänsten i en medelstor kommun i Mellansverige. Den del av familjestödet som har studerats är den serie samtal som erbjuds genom familjeenheten och som genomförs där.

Studiens övergripande syfte var att undersöka hur familjestödjande samtal fungerar och organiseras i samspel mellan barn, föräldrar och professionella. Mer specifikt avsåg studien belysa om och hur barn genom dessa samtal får stöd att prata om föräldrars psykiska problem samt huruvida och på vilket sätt familjestödet kan bistå föräldrarna i deras föräldraskap.

Inom ramen för forskningsstudien samlades data in från 21 familjestödssamtal samt intervjuer med sju föräldrar och fyra barn efter avslutat familjestöd. Dessutom genomfördes sju intervjuer med samtalsledarna som medverkat vid de studerade familjestödssamtalen. Tre familjer följdes genom hela samtalsserien som för dessa familjer omfattade mellan sex och åtta samtal. Samtliga familjestödssamtal spelades in med ljud och bild medan enbart ljud gällde för intervjuerna.

Familjestödssamtalen analyserades med samtalsanalytiska och narrativa metoder. Viktiga teoretiska utgångspunkter var det som brukar kallas institutionella samtal och teorier om socialt samspel i interaktion. Av betydelse var också tidigare forskning om barnsamtal och familje-samtal som kommunikativ praktik och i institutionella kontexter t.ex. familjeterapi, samt internationella och nationella studier om familjestödjande interventioner av typen Beardslees preventiva familjeinterventionoch den finska kortversionen Föra barnen på tal

Den här rapporten handlar om hur skolan kan utveckla sin förmåga att upptäcka och ge stöd till elever,
om lever i familjer med missbruk. Underlaget är ett projekt Skol-BIM (Barn i missbruksmiljö i skolan)
som har det övergripande syftet att bidra till att dessa elever ska klara sin skolgång utifrån skolans mål och därmed förbättra sina möjligheter till ett gott liv, här och nu och som vuxna. Rapportens syfte är förutom redovisning av projektet, att inspirera fler skolor att öka sin förmåga att upptäcka och ge relevant stöd till barn vars föräldrar har problem med missbruk.

Kunskapsöversikten bygger på en litteraturgenomgång av internationella och nationella vetenskapliga studier inom området. Den kartlägger de olika typerna av stöd som finns tillgängliga för anhöriga till personer som får vård i livets slutskede och bor hemma. Kunskapsöversikten är viktig ur ett anhörigperspektiv då anhöriga i den typen av situationer är en grupp som ofta ställs inför stora utmaningar – att försöka förlika sig med den förestående förlusten av någon de älskar, samtidigt som de vill se att den sista tiden i livet ska blir så bra som möjligt.

Abstract [en]
Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

Väldigt berörande! Ett barn, hans bror, en familj drabbad av cancer så nära beskrivet att det kryper under skinnet på läsaren. Hur jobbigt och oroligt det faktiskt är både i stort och smått i den situation familjen levt med under alla dessa år. Författaren speglar även väldigt väl hur viktigt det är med förtroende och bemötande inom vården. En bok av detta slag bör varje vårdarbetare läsa och lägga de insikter den ger i bakhuvudet för att bättre kunna förstå helhetssituationen för patienten och familjen.Nils Erik Svedlund, barnläkareMaria tar oss med i många års kamp med ett cancersjukt barn och deras vardag. Vi kommer nära förtvivlan, smärta och tristess men också hopp, glädje och en stark syskonrelation. En viktig bok, även för personal och vårdutbildningar!Angelica Lindberg, kuratorSå glad att denna ärliga och viktiga bok finns! Berättelsen gav mig en insikt och förståelse för hur livet kan te sig i en familj med ett cancersjukt barn! När jag läste Titanium var det som om jag själv fanns med i familjens vardag och närhet. Så levande, så äkta, både kärleksfullt och skrämmande. Vilken styrka, vilket tålamod, vilken förmåga att ta vara på det minsta lilla positiva trots det ofattbara som händer under cancerbehandlingen. En mycket varm, närvarande och viktig berättelse om en lång, återkommande kamp mot leukemi i unga år och de konsekvenser det får för alla i familjen. Men också vikten av att tänka på syskonen, att låta dem finnas med och få plats i den vardag som blivit. Titanium är en bok jag varmt vill rekommendera, särskilt till de som arbetar inom vård och skola.Anneli Träff, grundskollärare

När jag var liten fanns inte personlig assistans. Jag behövde mycket hjälp hela tiden. Mina föräldrar orkade inte med allt, trots att dom älskade mig. Därför var jag tvungen att bo på vårdhem. Det var det värsta jag varit med om. Jag ville inte äta. Jag slutade skratta och gråta. Doktorn sa till mamma och pappa att jag var så svårt skadad att jag aldrig skulle bli vuxen, och att de inte skulle orka ta hand om mig hemma. 1972, när jag var sju år, bestämde mamma sig för att ta hem mig. Året efter fick jag personlig assistans 40 timmar i veckan av kommunen. Tack vare det kunde jag få bra hjälp och vågade börja visa mina känslor igen. När jag var 26 år fick jag personlig assistans hela dygnet och flyttade till en egen lägenhet. Idag är jag 52 år, har ett bra liv och är mycket sällan sjuk, tack vare bra personlig assistans.

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Abstract
Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.

Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.

Abstract
Occupational therapists need to be cognizant of evidence-based role balance advice and strategies that women with multigenerational caring responsibilities can implement independently or with minimal assistance, as role balance may not be the primary goal during many encounters with this population. Hence, this study aimed to identify the viewpoints on the most helpful role balance strategies for working sandwich generation women, both from their own perspectives and from the perspective of occupational therapists. This was achieved through a Q methodology study, where 54 statements were based on findings from interviews, sandwich generation literature and occupational therapy literature. In total, 31 working sandwich generation women and 42 occupational therapists completed the Q sort through either online or paper administration. The data were analysed using factor analysis with varimax rotation and were interpreted through collaboration with experts in the field. The findings revealed similarities between working sandwich generation women and occupational therapists, particularly in terms of advocating strategies related to sleep, rest and seeking practical assistance from support networks. Differences were also present, with working sandwich generation women viewpoints tending to emphasize strategies related to coping with a busy lifestyle attending to multiple responsibilities. In contrast, occupational therapy viewpoints prioritized strategies related to the occupational therapy process, such as goal setting, activity focused interventions, monitoring progress and facilitating sustainable outcomes.

Kunskapsstödet presenterar en modell för hur samordning av insatser för barn med funktionsnedsättning kan förbättras av kommuner och landsting. Modellen förväntas öka barns tillgång till fungerande stöd och minska föräldrars arbetsbelastning. Här ges organisatoriska och praktiska framgångsfaktorer i arbetet med att utveckla samordning.

This short overview 'Young Carers in Sweden' is a summary of two reports on young carers in Sweden. The government initiated a wide spreading development work, in which the National Board of Health and Welfare, the National Institute of Public Health, Swedish municipalities and health care regions collaborated to strengthen support to children and young people in families with substance abuse, serious illness or mental ill-health, violence or death of a parent. These two reports provide the foundation for this work. The references to the original reports are found at the end of the overview.

Negotiating Family Responsibilitiesprovides a major new insight into contemporary family life, particularly kin relationships outside the nuclear family. While many people believe that the real meaning of 'family' has shrunk to the nuclear family household, there is considerable evidence to suggest that relationships with the wider kin group remain an important part of most people's lives.
Based on the findings of a major study of kinship, and including lively verbatim accounts of conversations with family members concepts of responsibility and obligation within family life are examined and the authors expand theories on the nature of assistance within families and argue that it is negotiated over time rather than given automatically.

This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).

This review has considered the ways parents cope with the chronic strain and daily stressors associated with caring for and bringing up a disabled child. The review has been structured around key concepts from the process model of stress and coping. Coping resources--both personal and socio-ecological--have been described, and the notion of vulnerability when resources are not available has been considered. It is only recently that research has turned to look at the coping strategies parents use. The review drew on research using a variety of methodologies to demonstrate the range of strategies used by parents. The relationship between coping strategies and adjustment was explored, although certain methodological difficulties impede firm conclusions being drawn. Finally, the review examined whether the process model of stress and coping could be usefully operationalised to inform intervention practices with families caring for a disabled child.

A factor analysis of four commonly used self-report measures of family functioning (Bloom, 1985) yielded 15 5-item factors. Five of these item sets have now been revised and strengthened. These modifications were undertaken because a review of the literature has revealed that the results of the factor analysis are being increasingly used in family studies. The rationale and description of the revisions of the factor item sets are presented. Psychometric analysis of the revised factors suggests that factor scores are highly reliable as well as stable over time. In addition to presenting comprehensive reliability data, this article provides information regarding factor score intercorrelations and structure, as well as a commentary on the factors themselves.

Hur är det att vara anhörig till en psykiskt sjuk människa? Boken är ett kritiskt inlägg i debatten mot fantasilöshet och byråkrati i vården, men författaren, själv anhörig, ger också många positiva förslag på goda samarbetsformer som underlättar tillvaron för de drabbade och deras anhöriga.

Socialpolitiken i verkligheten beskriver försäkringskassans sätt att tillämpa reglerna om handikappersättning för en grupp handikappade som under senare delen av 80-talet ansökte om ersättning. I centrum för studien står å ena sidan försäkringskassan - den myndighet som har att bereda och besluta i ärenden rörande handikappersättningen - och å andra sidan de handikappade själva med sina sociala rättigheter till ersättning för de extra stödbehov och de merutgifter som förorsakas av deras funktionsnedsättning.

Hetzler analyserar bl a de skillnader som kan konstateras i bedömningen av likartade ärenden, vilket visar på olika "kulturmönster" hos kassorna. Dessa skillnader ger varierande konsekvenser för de handikappade och skapar osäkerhet vad gäller deras rättssäkerhet. I en särskild studie av hur kvinnliga handikappade behandlas kan författaren påvisa systematisk diskriminering på grund av könstillhörighet. Männen tillerkänns ersättning i högre utsträckning än kvinnor, och därtill högre ersättning - också i likartade eller identiska fall.

Sex till sju år efter det att det första beslutet i deras ärende fattats i försäkringskassan kontaktades de handikappade i en uppföljande enkätundersökning. Resultatet av enkätundersökningen ger flera viktiga bidrag till förståelsen av de handikappades situation i samhället och deras syn på sig själva som individer.

Många barn med flerfunktionsnedsättning behöver synstimulering. Handboken Synstimulering – den tidiga utvecklingen av Gunilla Jangdin går igenom det lilla barnets synutveckling och visar hur synstimulans och samspel kan utvecklas trots omfattande flerfunktionsnedsättning i kombination med en synskada. Det är en lättläst och mycket användbar bok för alla föräldrar som vill förstå och stimulera sitt barns utveckling.

6-month-old infants selected on irritability shortly after birth and their mothers were randomly assigned to 2 intervention and 2 control groups to test the hypothesis that enhancing maternal sensitive responsiveness will improve quality of mother-infant interaction, infant exploration, and attachment. The intervention lasted 3 months and ended when the child was 9 months of age. When infants were 9 months of age, intervention group mothers were significantly more responsive, stimulating, visually attentive, and controlling of their infant's behavior than control group mothers. Intervention infants had higher scores than control infants on sociability, self-soothing, and exploration, and they cried less. Quality of exploration also improved, with intervention infants engaged in cognitively sophisticated kinds of exploration more than control infants. At 12 months of age, significantly more intervention group dyads were securely attached than control group dyads.

Describes the case of a 28-yr-old woman whose 6-yr-old son was diagnosed with attention deficit hyperactivity disorder (ADHD). Behavioral parent training (BPT) was recommended for the mother, followed by medication for the child. However, during BPT the mother was also diagnosed with ADHD. The mother was evaluated using a double-blind procedure with placebo and methylphenidate. The ability of the mother to monitor and manage her son's behavior was assessed using a self-monitoring form and daily interviews. Methylphenidate improved the mother's ability to manage her son's behavior consistently and reduced the severity of her other ADHD symptoms, including fidgety and impulsive behavior. The mother's perceptions of her parenting skills also improved. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

How much do we know of young carers - that is, children under 18 who provide primary care for sick, disabled, or elderly relatives in the home, usually their own parents?1 Meredith suggested that health professionals have failed to identify such children and have shown interest in them only when the possibility of psychological or physical disorders has been raised.2

Small studies have suggested that there are at least 10 000 young carers in Britain.3,4 Recent research has, however, rejected the usefulness of such data, concentrating instead on the qualitative impact that caring may have on a child's health, psychosocial development, and opportunities.*RF 5-7*

A substantial obstacle to addressing the needs and concerns of young carers has been a lack of awareness of their existence. Providers of services - whether health, education, or social services - have consistently failed to identify young carers. As one young carer said, "You can't picture a child picking up an adult, getting them on to the stair lift, taking them up, bathing them. If you can't picture it, it doesn't happen."8

Doktorsavhandling

Den här skriften handlar om hur man genom samarbete kan komma fram till
vardagsfunktionella lösningar för personer med kommunikationshandikapp. Utgångspunkten
är den modell för familjemedverkan och gemensam problemlösning som utvecklats av Mats
Granlund och Eva Björck-Åkesson, här speciellt tillämpad på AKK-området. Modellen för
gemensam problemlösning har utformats och använts vid åtgärder för vuxna och barn i behov
av särskilt stöd (Granlund, 1988; Björck-Åkesson & Granlund, 2000). Den har utvärderats vid
forskningsstiftelsen ALA, Stockholm och inom forskningsprogrammet CHILD (ChildrenHealth-Intervention-Learning-Development)
vid Mälardalens Högskola. Likaså har den
använts som grund för en interventionsmodell i ett projekt kring kommunikation (KomP) på
Bräcke Östergård, Göteborg, 1995-1998, (Zachrisson, 1998). Ytterligare erfarenhet av
gemensam problemlösning kring alternativ och kompletterande kommunikation har tillförts
genom projektet "Kommunikation genom teknik – ur ett vardagsperspektiv", ett projekt i
samarbete mellan kommunikations- och dataresurscentren DART i Göteborg och DaKo i
Halmstad 1999-2001, finansierat av KFB (Vinnova).
Skriften riktar sig främst till arbetsterapeuter, logopeder, pedagoger och andra som i sitt yrke
kommer i kontakt med personer som använder eller har behov av alternativ och
kompletterande kommunikation, AKK. Syftet är att beskriva en modell för samverkan där
brukaren, de som han/hon samspelar med och experter/professionella kan mötas. Alla kan
bidra med sina olika kunskaper och erfarenheter i arbetet med att utveckla bra lösningar för
brukaren som ger henne/honom möjligheter att kommunicera i vardagen på ett
tillfredställande sätt.
En ofta förekommande fråga vid gemensam problemlösning är varför begreppet "problem"
används. Anledningen till att vi valt att använda detta begrepp är att det är generellt och kan
inbegripa olika former och nivåer av svårigheter. Det går emellertid bra att använda begrepp
som svårigheter eller frågeställningar. I praktiken pratar man ofta om svårigheter. Naturligtvis
är det viktigt att i första hand se till personens resurser och till resurser i omgivningen och
använda dessa i åtgärdsarbetet.
Gerd Zachrisson, arbetsterapeut vid kommunikations- och dataresurscentret DART i
Göteborg har tagit initiativ till skriften och har sammanställt den tillsammans med Eva
Björck-Åkesson, professor i pedagogik vid Mälardalens Högskola och Bitte Rydeman,
logoped vid dataresurscentret DaKo i Halmstad och doktorand vid Institutionen för Lingvistik
vid Göteborgs Universitet.

The author of this study investigated the variety of functions used by a bilingual infant to provide further evidence for the communicative-functional approach to child language acquisition, compared the development of pragmatic functions in a monolingual and a bilingual child, and devised a categorization system that can be applied to child language acquisition data by other researchers in the field. Accordingly, data collected from a Persian-English bilingual child during a period of 10 months, as part of a longitudinal study, were analyzed, and a taxonomy of pragmatic functions the participant used was established. Analysis of the data indicated that despite certain differences in the frequency and distribution of pragmatic functions the participant employed in the present study (bilingual) and those used by Halliday's monolingual child, the two studies demonstrated that both children developed pragmatic functions from a very early age. The theoretical implication of this study is that the development of pragmatic functions is a natural tendency in young children, whether monolingual or bilingual. The practical outcome of the study is a proposed categorization system that is intended to facilitate the analysis of child language acquisition data from a communicative-functional perspective.

The purpose of this study was to generate knowledge of the interaction between an adult patient's family members and nursing staff from the staff's perspective.

Data were collected from nursing staff (n=155) working on the wards and out-patient departments for pulmonary, rheumatic, neurological and gastroenterological diseases at a university hospital by using a new questionnaire based on earlier research and the literature. The questions explored the staff's views of interaction with the adult patient's family members. In this study, interaction is seen as an umbrella concept which encompasses giving information to relatives, discussion, contacts between staff and significant others and working together. The instrument included questions about personal and telephone discussions, the provision of written instructions and factors facilitating and complicating interaction. The response rate was 55%. The data were analysed using SPSS software and examined using frequency and percentage distributions and cross-tabulation. The open-ended questions were analysed using qualitative content analysis by reducing, grouping and abstracting the data inductively.

Discussions with relatives while they visited the patient in hospital were the commonest form of interaction. The majority of respondents perceived the interaction with the patient and knowing his or her family members as important. Less than one-fourth of the respondents started discussion with family members, while the majority expected family members to initiate interaction. The majority of respondents perceived the patient's presence in discussion as important, but sometimes they thought it was necessary to discuss with family members without the patient. The staff discussed with family members mainly in the ward office or in patient rooms, which were, however, not perceived as peaceful. Discussions primarily pertained to the patient's condition, discharge from hospital and planning of continued treatment.

The literature on transgenerational transmission of Holocaust trauma has grown into a rich body of unique psychological knowledge with almost 400 publications. For the time being, however, the transgenerational effect of the Holocaust on the offspring remains a subject of considerable controversy. The main question involves the presence or absence of specific psychopathology in this population. Psychotherapists kept reporting various characteristic signs of distress while research failed to find significant differences between offspring and comparative groups. In an effort to settle this question, the present review of the research literature provides a summary of the findings of 35 comparative studies on the mental state of offspring of Holocaust survivors, published between 1973-1999. This extensive research indicates rather conclusively that the non-clinical population of children of Holocaust survivors does not show signs of more psychopathology than others do. Children of Holocaust survivors tend to function rather well in terms of manifest psychopathology and differences in the mental state of offspring and people in general are small according to most research. The clinical population of offspring, however, tend to present a specific "psychological profile" that includes a predisposition to PTSD, various difficulties in separation-individuation and a contradictory mix of resilience and vulnerability when coping with stress.

Childhood cancer can have a substantial emotional impact on the siblings of the sick child. In order to help these siblings adjust to the illness, supportive groups were started in 1994 at our medical center. The program is based on a model of psychosocial support; the aim of the group is to enhance control strategies and, thus, to reduce anxiety. It consists of five sessions and is offered to siblings aged 7–18. The study objective is to evaluate the effect of group participation on sibling anxiety. The State Trait Anxiety Inventory for Children was administered to 24 siblings before and after group participation.

Results showed that siblings experience less anxiety after participating in the group. Before group participation, a majority of the siblings were more anxious compared with normal peers. The sibling's age and sex, whether the ill child is in treatment, survival perspective, and time since diagnosis were not related to anxiety reduction. The continuation of the group is supported by its positive impact on siblings. Results must nevertheless be interpreted cautiously, considering the small number of siblings participating in the study, the lack of a control group and the restriction to one outcome measure.

Abstract
PURPOSE/OBJECTIVES:
To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer.
DESIGN:
Descriptive, qualitative study.
SETTING:
Private family homes.
SAMPLE:
Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer.
METHODS:
Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer.
MAIN RESEARCH VARIABLES:
Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses.
FINDINGS:
The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family would have to cut back financially; worrying about talking to others; and wondering if they, the children, would get cancer.
CONCLUSIONS:
Children of mothers with breast cancer experience multiple worries concerning their mothers, their families, and themselves. The data revealed that they attempted to make sense of their mothers' illness for themselves and imagined how it might affect their own lives in the future.
IMPLICATIONS FOR NURSING PRACTICE:
Programs and materials need to be developed that help parents address the multiple worries that children whose mothers have early-stage breast cancer experience.

This artcle summarizes the Incredible Years Series. The training series consists of three empirically validated and integrated programs for parents, teachers and children that are designed to promote social competence and prevent, reduce and treat conduct problems in young children. The training methods, content and processes are explained.

Early intervention bridges the gap between early diagnosis and appropriate educational placement. The National Autistic Society has developed an autism-specific three-month parent package, the NAS EarlyBird Programme, that emphasizes partnership with parents. Six families participate in each three-month programme, which combines weekly group training sessions for parents with individualized home visits. During the programme parents learn to understand autism, to build social communication, and to analyse and use structure, so as to prevent inappropriate behaviours. The use of video and the group dynamic amongst families are important components of the programme. An efficacy study evaluated the pilot programme and further monitoring is in progress. Training courses in the licensed use of the NAS EarlyBird Programme are now available for teams of professionals with prior experience of autism. Strengths and weaknesses of the programme are discussed. This short-term, affordable package, with supporting evidence of efficacy, offers a model of early intervention that is very popular with parents.

Den riksrepresentativa undersökning av hemmaboende äldre 75+ som gjordes våren 2000(Socialstyrelsen 2000a) är utgångspunkten för föreliggande två studier av äldre som själva är anhörigvårdare respektive av äldre som får anhörigvård.Av äldre som själva är anhörigvårdare har i föreliggande undersökning enbart personer som vårdar någon i det egna hemmet valt att medverka; nästan alla är make/maka till den vårdade. Detta innebär en något beskuren bild av äldre som omsorgsgivare, men troligen en adekvat belysning av äldre som vårdar sin partner. Bland äldre som fick mycket hjälp-omsorg-vård intervjuades anhöriga, av dessa var drygt hälften en maka-make. Totalt omfattar intervjuerna 56 personer (20 respektive 36 i dessa två grupper). I båda kategorierna är likheterna mer slående än skillnaderna.De flesta anhörigvårdare är själva äldre. Inte så få är män, särskilt inom äktenskapets ram. När makar står för omsorgen har vården ofta pågått länge och för en del har den medfört nedsatt hälsa.Vårduppgifterna är ibland fysiskt och/eller psykiskt betungande och medför ofta inskränkningar i den anhöriges sociala liv. Få av dem har arbete och än färre har tagit ledigt för att vårda. De vårdade har vanligen mycket nedsatt funktionsförmåga och är helt beroende av vårdaren, något som är tydligt belastande. Ganska många är drabbade av demenssymptom eller andra kognitiva nedsättningar.Det mest påtagliga är att så få använder offentlig hjälp. De som har sådan, har ofta mycket få insatser. De använder ett fåtal hemhjälpstimmar eller enbart annan hemtjänst såsom larm, matlåda och/eller färdtjänst. Många har dock fått sina bostäder anpassade och några får omfattande offentlig hjälp och är uttalat nöjd med den, men många av dem som inte har offentlig hjälp är också nöjda. Minst en tredjedel av anhörigvårdarna har uttalade önskemål om offentligt stöd.Manliga anhörigvårdare använder sig oftare av offentlig hjälp (hemhjälp m.m.) än kvinnliga anhöriga. Många av vårdarna får också hjälp av andra anhöriga, när sådana finns att tillgå. Påfallande många står dock utan stöd från andra anhöriga, bland de yngre är många enda barnet eller det enda tillgängliga barnet. Totalt sett bor nästan alla vårdare tillsammans med eller mycket nära den de hjälper. De vårdade oftast färre anhöriga (partner, barn, syskon, annan släkt) än den äldre befolkningen i allmänhet.Mycket få vårdare efterlyser spontant något offentligt stöd. Endast hälften efterfrågar hjälp när de får ta ställning till konkreta listor över tänkbara stödformer. De som önskar hjälp vill endera ha "avlastning" och/eller rehabilitering respektive (mer) hjälp med hushållet. Endast en sjättedel avvisar offentligt stöd i alla former. När anhöriga formulerar önskemål är de ofta mycket blygsamma: "om åtminstone blöjleveranserna kom i tid!". De offentliga insatserna framstår ibland som fantasilösa, otydliga och inflexibla. Studien fann också flera exempel på anmärkningsvärda missförstånd. Uppenbart är att många av dessa anhörigvårdare har (fått) föga information om stödmöjligheter m.m.Anmärkningsvärt många anhöriga (ca. hälften) önskar ekonomisk ersättning för sina insatser, några har redan små belopp för det de uträttar. När anhörigvårdare begärt ersättning har det för flera avslagits utan motivering eller på tveksamma grunder.Trots allt är närmare hälften i stort sett nöjda med sin situation och med den offentliga hjälp de får. Undersökningen finner åtskilliga exempel på illa fungerande offentlig hjälp, men också flera goda exempel på välfungerande insatser med mycket nöjda vårdtagare och anhöriga. Knappt hälften av vårdarna är intresserade av kontakt med frivilligverksamhet, något som ett fåtal redan har. Dessa är i allmänhet tydligt nöjda med detta stöd.

Ranging across disciplinary boundaries, this book analyzes metaphors of dependency in differing contexts - the body, the family, work and leisure. Combining a robustly critical analysis with breadth of interdisciplinary sweep, Growing Up and Growing Old challenges the stigmatizing role that stereotypes can play in the lives of particular groups of people.

The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.

Perceived control plays a central role in many motivational and cognitive accounts of behavior. In this study, a new 48-item self-report instrument, the Multidimensional Measure of Children's Perceptions of Control, is described. Perceptions of control are defined as children's understanding of the locus of the sufficient cause for success and failure outcomes. 3 dimensions of third- through ninth-grade children's perceptions of control are independently assessed: internal, powerful others, and unknown. Each of these sources of control is assessed within 3 behavioral domains: (a) cognitive, (b) social, and (c) physical. General items are also included. Perceptions of control over success outcomes and failure outcomes are assessed separately. The psychometric properties of the new measure's subscales are presented. Correlations of the new measure with measures of perceived and actual competence and findings demonstrating the sensitivity of the new measure to developmental, gender, and environmental influences are reported. It is argued that the new measure is an advance over existing measures of internal versus external locus of control in children because it provides domain-specific assessments of 3 separate dimensions of locus of control, including the previously untapped dimension of unknown control.

This book contains a selection of papers presented at the 10th International Congress of the International Association for Child and Adolescent Psychiatry and Allied Professions, held in Dublin in 1982. Developments currently taking place in child psychiatry and clinical child psychology are represented, and in particular, the two themes of processes within families and evaluation of intervention reflect important aspects of research activities that have emerged recently.

Man kan urskilja två ursprung till bildsemiotiken, dels ur försöker att avleda en modell ur studiet av enskilda bilder, som växer fram ur kritiken av Barthes första, enligt allakompetenta bedömare ganska misslyckade försök med utgångspunkt i en reklambild; och dels ur kritiken av Peirces ikonicitetsbegrepp hos Bierman, Lindekens och Eco och av det vardagliga bildbegreppet grundat på likhet hos Goodman, som också bygger påmånga missförstånd. I denna artikel diskuteras i viss mån den första traditionen, men huvuddelen ägnas åt den andra. En ny teori på fenomenologisk grundval angående den speciella form av ikonicitet som förekommer i bilder lägges fram, och denna ikonicitetkontrasteras med andra typer. En allmän indelning i primär och sekundär ikonicitet föreslages.

This study extends a program of research investigating the effectiveness of Brief Strategic Family Therapy to engage and retain families and/or youth in treatment. The study contrasted Brief Strategic Family Therapy (BSFT) with a Community Comparison (CC) condition selected to represent the common engagement and treatment practices of the community; 104 families were randomly assigned to BSFT or CC. Results indicate that families assigned to BSFT had significantly higher rates of engagement (81% vs. 61%), and retention (71% vs. 42%). BSFT was also more effective than CC in retaining more severe cases. Post hoc analyses of treatment effectiveness suggest that BSFT was able to achieve comparable treatment effects despite retaining more difficult cases. We discuss these results from a public health perspective, and highlight the study's contribution to a small but growing body of literature that suggests the benefits of a family-systems paradigm for engagement and retention in treatment.

This study extends a program of research investigating the effectiveness of Brief Strategic Family Therapy to engage and retain families and/or youth in treatment. The study contrasted Brief Strategic Family Therapy (BSFT) with a Community Comparison (CC) condition selected to represent the common engagement and treatment practices of the community; 104 families were randomly assigned to BSFT or CC. Results indicate that families assigned to BSFT had significantly higher rates of engagement (81% vs. 61%), and retention (71% vs. 42%). BSFT was also more effective than CC in retaining more severe cases. Post hoc analyses of treatment effectiveness suggest that BSFT was able to achieve comparable treatment effects despite retaining more difficult cases. We discuss these results from a public health perspective, and highlight the study's contribution to a small but growing body of literature that suggests the benefits of a family-systems paradigm for engagement and retention in treatment.

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

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.

Abstract
This study investigated the relationship of depressive symptoms, social support, and a range of personal health behaviors in 2,091 male and 3,438 female university students from 16 countries. Depressive symptoms and social support were measured using the short Beck Depression Inventory and the Social Support Questionnaire; 9 personal health behaviors were also assessed. After the authors took age, social support, and clustering by country into account, depressive symptoms were significantly associated with lack of physical activity, not eating breakfast, irregular sleep hours, and not using a seat belt in both men and women, and additionally with smoking, not eating fruit, and not using sunscreen among women. Low social support was independently associated with low alcohol consumption, lack of physical activity, irregular sleep hours, and not using a seat belt in men and women. Bidirectional causal pathways are likely to link health behaviors with depressed mood.

Encyclopedia of Mental Health, Second Edition, tackles the subject of mental health, arguably one of the biggest issues facing modern society. The book presents a comprehensive overview of the many genetic, neurological, social, and psychological factors that affect mental health, also describing the impact of mental health on the individual and society, and illustrating the factors that aid positive mental health.
The book contains 245 peer-reviewed articles written by more than 250 expert authors and provides essential material on assessment, theories of personality, specific disorders, therapies, forensic issues, ethics, and cross-cultural and sociological aspects. Both professionals and libraries will find this timely work indispensable.

VARFÖR DENNA BOK?Den här boken påbörjades för tjugofyra år sedan. Då kom vår tredje dotter Lisa till världen och hela vår familjesituation förändrades i grunden. Lisa föddes med funktionsnedsättningen Downs syndrom, eller mongolism, som många felaktigt kallar det. Under Lisas första månader skrev jag ner mina tankar och reaktioner i form av anteckningar och dikter. Mycket text kring förtvivlan, sorg, skam, ilska, hopp, kärlek och det som jag, och säkert andra mycket tidigare än jag själv, uppfattade som självömkan.Efter några månader övergav jag mitt skrivande, troligen för att jag inte hade samma uttrycksbehov. Men säkert också för att mitt samvete inte ville konfronteras med mina formuleringar. Behovet av att skriva dikter avtog. När jag sjutton år senare hittade en gammal utskrift av mina anteckningar föddes idén om att fullfölja berättelsen fram till dags dato. En fortsättning på en historia som varit arbetsam, men som stärkt vår familj och gett oss särskilda erfarenheter och livskvaliteter. En viktig anledning till att nu avsluta berättelsen var att söka en förklaring till varför jag reagerade som jag gjorde när Lisa föddes. Var mina reaktioner ovanliga? Kunde andra uppleva situationen på liknande sätt? Samtidigt sporrades jag av en slags nyttoinriktad ambition att få andra att förstå min upplevelse: I ett av mina lyckligaste ögonblick ställs jag inför faktumet, att vårt nyfödda barn har en funktionsnedsättning. Så den här boken blir främst en personlig vittnesbörd. Men den som tagit del av den vill säkert gå vidare, vidga sin kunskap och få veta mera. Boken avslutas därför med en referenslista över vetenskaplig litteratur och information kring mitt ämne. Jag hoppas att detta kan inspirera till vidare läsning och diskussion. Vid varje kapitelslut finns korta sammanställningar av fakta eller refererat av det viktigaste jag läst. Forskning vill ju annars alltid bli för lång, det är därför den blir vad den ska vara, i bästa fall: Ögonöppnande, och utan slut. För den som vill koppla bokens innehåll till utbildning finns ett textmaterial: "Det tårdränkta barnet. Forskningsgenomgång, diskussionsfrågor och förslag till arbets- och fördjupningsuppgifter", som lätt kan laddas hem på webbadressen karlsudd.se. Här kan du även se Lisas bilder i färg.Min berättelse här bygger alltså på mina personliga erfarenheter. Jag vill betona det, allt jag skriver får givetvis stå för mig. Jag har försökt anstränga mig för att göra rättvisa åt övriga familjemedlemmars minnesbilder. Under fem somrar har jag försökt slutföra texten, men inte lyckats. Eftersom Lisas utveckling gått bakåt de senaste åren har det varit svårt att skriva om den tid som varit. Om du läser den här texten omgiven av ett bokomslag, har jag trots detta lyckats i mina föresatser.Boken tillägnar jag Lisa - vår underbara dotter och syster som har gett oss så mycket glädje, kärlek och insikter i livet. Som vi alltid säger till henne vid läggdags: VI ÄR STOLTA ÖVER DIG, VI ÄR RÄDDA OM DIG OCH VI ÄLSKAR DIG.Pappa Peter, med uppmuntran från mamma Marie och storasystrarna Anna-Mi och Hanna.Karlsnäs, 2014

BACKGROUND: In a previous study, the objective burden of informal caregiving to
patients with psychotic disorders amounted to 22 hours/week, and the subjective
burden was huge with predominately anxiety and depression as main symptoms. In
this study, determinants of the informal caregiving burden are analyzed to find
foci for interventions to ease the size of burden.
METHODS: Patients with psychotic disorders (n = 107) and their informal
caregivers (n = 118) were included. They were assessed with a comprehensive
battery of rating scales including patient and caregiver characteristics as well
as the amount and quality of health-care provision.
RESULTS: A multiple linear regression analysis showed that the subjective burden
was significantly lower when patients had higher levels of functioning and when
the health status of the informal caregivers was good. No significant
determinants were found for the objective burden, but an association was found
between a higher socioeconomic status of the caregivers and the amount of money
provided for the patient. An association was also found between a positive
perception of caregiving and more hours spent on caregiving.
CONCLUSION: The functioning level of the patients was the main determinant of the
subjective burden of informal care. For the objective burden, no main determinant
was found.

Our aim was to compare the effect of three different interventions in spouses of alcoholics with regard to coping strategies, mental symptoms, hardship, and drinking patterns. The spouses were randomized to three different interventions: 1) information, 2) individual coping skills training, and 3) group support. Follow-up periods were at 12 and 24 months. In this paper the 12-month results are presented. Thirty-nine spouses attended the study. They were recruited from the services of the Department of Alcohol and Drug Diseases, Malmö University Hospital, Malmö, Sweden, and advertisements in the local daily press. The spouses were randomized to 1) 1 standard information session, 2) 4 individual coping skills training sessions, once a month, and 3) 12 group sessions, twice a month. Background data were obtained, and four self-report scales-the Coping Behaviour Scale, Hardship Scale, SCL-90, and AUDIT-were administered at admission and follow-up examinations. At follow-up all three groups had improved significantly with regard to coping behaviour, hardship, and mental symptoms. The coping skills training group and the support group together showed a stronger decrease in psychiatric symptoms (P = 0.1) than the single information session group. The three groups did not differ in coping behaviour and hardship. The findings indicate that changing of coping strategies in spouses of alcoholics can be successful with only one single information session, whereas the reduction of mental symptoms may need longer treatment.

Många hade försökt förstå sig på Anna. Men hon hann bli femton år innan någon förstod att hon hade Aspergers syndrom. Att leva med asperger kan vara påfrestande och man stöter på fler hinder i vardagen än andra. Det kan leda till stress och så småningom utbrändhet. Och Anna är långtifrån ensam om sina upplevelser. När Anna var sjutton år kom hon till sist inte iväg till skolan. Här börjar författaren Elisabet von Zeipel och Anna en spännande "resa" som vi får följa med på.

Det här är en fackbok i berättelsens form. Anna har farit illa men trots det är det en hoppfull bok. Utbrändhet kan förebyggas när vi sänker stressen för personer med asperger.