Bibliotek

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

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: 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.

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.

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.

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.

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.

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.

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.

Abstract [en]

Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease, especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents aged 15–17, caring for GrPs, living in Italy (87) and Slovenia (75), respectively. A multiple linear regression model was built for the quantitative data. Qualitative data were content analysed using an open coding process. Italian and Slovenian respondents reported a moderate amount of caring activity and relatively high positive caregiving outcomes. Nevertheless, one out of three AYCs reported health problems due to their caring responsibilities. Compared to their Italian counterparts, Slovenian respondents were supported to a lesser extent by public services. Italian respondents faced communicative and practical problems; Slovenian AYCs experienced mainly emotional discomfort. AYCs from both countries requested emotional and practical support from formal services and family networks. Further, Slovenian AYCs requested emotional support and a personalized learning plan from schoolteachers. Support measures aimed at training AYCs of GrPs on geriatric care are recommended to address specific issues related to ageing and long-term care needs.

Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs.

Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337).

Results: The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39).

Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.

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.

Meta-syntheses can enhance our knowledge regarding the impact of the environment on the participation of youth with disabilities and generate theoretical frameworks to inform policy and best practices. The purpose of this study was to describe school-aged youth with disabilities' perspectives regarding the impact of the environment and modifications on their participation. A meta-synthesis systematically integrates qualitative evidence from multiple studies. Six databases were searched and 1287 citations reviewed for inclusion by two independent raters; 15 qualitative articles were selected for inclusion. Two independent reviewers evaluated the quality of each study and coded the results section. Patterns between codes within and across articles were examined using a constant comparative approach. Environments may be more or less inclusive for youth with disabilities depending upon others' understanding of individual abilities and needs, youth involvement in decisions about accommodations, and quality of services and policies. Youth implemented strategies to negotiate environmental barriers and appraised the quality of their participation based on the extent to which they engaged alongside peers. This meta-synthesis generated a framework illustrating the relationship between the environment, modifications and participation, and provided a conceptualization of participation grounded in the lived experiences of youth with disabilities. Findings reveal gaps in current knowledge and highlight the importance of involving youth with disabilities in decision making.

Om åldrandet hos personer med intellektuell funktionsnedsättning finns inte mycket skrivet. Det är bakgrunden till att Riksförbundet FUB och Svenskt Demenscentrum ger ut denna bok. Att åldras med autism respektive Downs syndrom och När glömska blir ensjukdom är några teman. Vidare behandlas förändrade sociala villkor, när den dagliga verksamheten upphör, och hur våra egnaföreställningar av åldrandet kan påverka personerna. Boken tarockså upp vård i livets slutskede och hur personal och anhörigakan möta existentiella frågor kring döden.

Vid sidan av boken finns två avgiftsfria webbutbildningar om att åldras med intellektuell funktionsnedsättning. Boken och utbildningarna har finansierats av Allmänna arvsfonden.

2015 rapporterades 60 013 dödsfall vilket utgör 66 % av alla inträffade dödsfall. Antalet
rapporterade dödsfall är därmed i stort sett konstant 2013 – 2015 men andelen varierar
något då olika antal avlidit respektive år.
 Geografiskt har andelen rapporterade utifrån folkbokföringskommun stigit minst 10 % i 51
kommuner, ligger inom +- 10 % i 172 kommuner samt sjunkit mer än 10 % i 68 kommuner
2015 jämfört med 2013.
 I 84 % av rapporterade av vården väntade dödsfall 2015 anges att läkaren gjort en
dokumenterad medicinsk bedömning om att vården övergår i palliativ vård i livets slut. Det är
endast i 59 % av dessa fall som det också rapporteras att det finns ett dokumenterat
läkarsamtal om denna bedömning med patient eller om denne är oförmögen att delta med
närstående.
 Den rapporterade tillgången av specialiserad palliativ vård (hospice + slutenvård +
specialiserad hemsjukvård + palliativ konsult/rådgivningsteam) varierar kraftigt mellan länen
från 6,9 till 23,1 %.
 Medianvårdtiden inom den specialiserade palliativa slutenvården har sjunkit från 11 till 9
dagar och inom den specialiserade palliativa hemsjukvården ifrån 56 till 46 dagar. Detta går
emot grundprinciperna i det palliativa förhållningssättet där tidigt palliativt stöd har visat sig
vara av godo.
 Cancer fortsätter att dominera som diagnos inom den specialiserade palliativa vården i
Sverige (87%) trots att patienter med andra sjukdomar kan ha lika stora behov.
Vårdkvaliteten är hög, men till exempel inom smärt- och symtomskattning finns det utrymme
för förbättring.
 Resultatmässigt har för väntade dödsfall en sammanslagning av dokumenterade
brytpunktssamtal, ordination av inj-läkemedel mot ångest vid behov, smärtskattning samt
dokumenterad munhälsobedömning använts. Detta fortsätter att förbättras och var 2015
58,3 % - en förbättring med 2,5 % jämfört med 2014.
 Symtomet illamående förekommer hos 15 procent av patienterna under sista veckan i livet.
Över åren har vi blivit bättre på att lindra symtomet, det förekommer huvudsakligen hos
cancerpatienter och två tredjedelar av dessa patienter har tillgång till någon form av
specialiserad palliativ kompetens.
 Bland övriga viktiga indikatorer ses generellt ingen förändring mellan åren bland de väntade
dödsfallen beträffande andelen med trycksår eller andelen som haft dropp eller sondnäring
sista levnadsdygnet.
 Svenska palliativregistret har fått sin första medicine doktor som byggt sin avhandling
huvudsakligen på registrets data. Ytterligare 2 vetenskapliga artiklar baserade på registerdata
har publicerats under 2015 där man dels konstaterar att hög ålder bland cancerpatienter är
en riskfaktor för sämre kvalitet och dels konstateras att patienter med KOL inte erbjuds
samma vårdinnehåll som cancerpatienter. Vidare har 4 uppsatser baserade på registerdata
kommit till registrets kännedom vars innehåll förtjänar att spridas.

De flesta människor som drabbas av svåra psykiska problem återhämtar sig, helt eller delvis. Att återhämta sig betyder inte att man nödvändigtvis är fri från alla symtom utan kan även innebära att man kan hantera dem och leva ett acceptabelt liv. Bland läkare, vårdpersonal och även bland dem som själva har psykiska problem finns en utbredd pessimism om möjligheterna att återhämta sig. Men i dag har vi tillgång till forskningsresultat som motsäger föreställningar om de psykiska störningarna som varande livslånga, kroniska sjukdomar. Forskning visar att de flesta människor som exempelvis fått psykiatrins mest belastade diagnos – schizofreni – återhämtar sig.
Vad hjälper människor med svåra psykiska problem att återhämta sig? Vad gör de själva, och vad kan andra – professionella, anhöriga, närstående – göra för att bidra till denna process? Boken resonerar kring professionalitet och vad ett återhämtningsinriktat professionellt arbete kan innebära. Återhämtning är en unik individuell process. Helt olika insatser kan bidra till återhämtningsprocessen för olika personer och för samma person i olika perioder. Den kan därför aldrig reduceras till en metod som kan tillämpas lika på flera patienter. Boken önskar förena individernas – brukarnas – erfarenhetsbaserade kunskap med kunskap från forskningen. Utgångspunkten är att människor återhämtar sig från svåra psykiska problem och att deras egna berättelser om återhämtningsarbetet erbjuder trovärdig kunskap.

Boken vänder sig dels till brukare och närstående, dels till personal verksam inom psykiatri och socialtjänst. Den är också avsedd som kursbok för högskolestuderande inom områdena socialt arbete, psykologi, vård och medicin. Boken används dessutom som lärobok/komplement till cirkelmaterialet vid studiecirklar inom ramen för Återhämtningsprojektet (som drivs av Riksförbundet för Social och Mental Hälsa [RSMH], Forskningsstiftelsen Humlan och FoU-enheten vid SPO Psykiatrin Södra, Stockholms läns landsting) som i första hand löper under åren 2004 och 2005.
Alain Topor är leg psykologi, fil dr och chef för FoU-enheten vid SPO Psykiatrin Södra inom Stockholms läns landsting. Han är även forskningschef på institutionen för socialt arbete, Stockholms universitet. Han har tidigare arbetat inom socialtjänst och psykiatri som familjebehandlare, behandlingsansvarig, handledare samt med forskning och utveckling inom socialtjänsten och psykiatrin.