Bibliotek

ABSTRACT
Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan's perspective on the doing of family life, and Hochschild's analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants' sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

Denna rapport är ett led i Attentions arbete för att uppmärksamma och förbättra situationen för personer med neuropsykiatriska funktionsnedsättningar. Rapporten redogör för en enkätundersökning genomförd i april 2021.

Abstract
Background
Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.

Methods
The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD.

Results
In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.

Conclusions
Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.

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.

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

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.

BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

Abstract
Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members' thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members' expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members' expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one's identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members' dignity: the two-headed paradox and reciprocal impact. The two-headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members' feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals' understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members' sense of dignity.

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.

Abstract [en]
The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving "uncooperative" disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving

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.

Sammanfattning
The Family Model är ett familjeorienterat verktyg där kliniker med hjälp av en visuell modell tillsammans med familjen kartlägger hur psykisk ohälsa påverkar och påverkas av relationerna i familjen och omständigheterna omkring den. Modellen har utvecklats av Adrian Falkov, barn- och ungdomspsykiater i Australien. Syftet med studien är att undersöka om modellen kan vara användbar i Sverige. Studien består av två delar. I den första delen fick medarbetare i barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård sätta sig in i modellen genom att bland annat gå en webbkurs, eventuellt prova modellen i praktiken (frivilligt) och sedan delge sin uppfattning i en enkät. Sammanfattningsvis finner man modellen användbar, både i verksamheter som vill utveckla ett tydligare familjeperspektiv i sitt arbete och som komplement till andra interventioner, som många av deltagarna är förtrogna med. Några menar att de redan har välfungerande metoder som är bättre anpassade till deras arbete med t.ex. späd- och småbarn och deras föräldrar. Det finns också en önskan att den engelska webbkursen och den visuella modellen skall översättas och anpassas till svenska. I den andra delen av studien gick vi igenom ett antal styrdokument för vård av barn och vuxna med psykisk ohälsa för att se vilken vägledning dessa ger för arbetet med familjer med psykisk ohälsa. Många styrdokument tar upp arbete med familj och närstående till patienten, men detta sker oftare ur ett individorienterat än ur ett familjeorienterat perspektiv. Implementering och utvärdering av familjeorienterade interventioner vid psykisk ohälsa framstår som en fortsatt angelägen uppgift.

OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective.

METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare.
Aims: The overall aim of this thesis was to illuminate perceptions of everyday life, family support from mental healthcare professionals, and quality of community mental healthcare from the perspectives of families living with mental illness. A further aim was to elucidate families' and mental healthcare professionals' experiences of Family Centered Support Conversations (FSCS) in community mental healthcare.
Methods: A descriptive design with qualitative and quantitative methods was used. Qualitative data were collected by means of family interviews with seven families living with a young adult suffering from mental illness (n= 17 participants) (I, III) and individual interviews with mental healthcare professionals (n= 13) (IV). The data were analyzed using phenomenography (I, III, IV). Quantitative data were collected from adult patients (n= 43) suffering from mental illness and family members (n=43) (II) in community mental healthcare using the Family Perceived Support Questionnaire (ICE-FPSQ), the Quality in Psychiatric Care – Community Out -Patient (QPC-COP) and Out-Patient Next of Kin (QPCCOPNK). The data were analyzed using non- parametric statistics (II).
Main findings: Families balanced between letting go and enabling the young adult to become independent while remaining close to help him/her complete education, work and have a social life (I). The young adults tried not to be a burden, but still longed for family members to understand them (I). Family members intervened as best they could (I), but felt there was a lack of support and respect and no invitation to take part in the mental healthcare
(II). Family members reported significantly lower quality of community mental healthcare than patients (II). Healthcare professionals held back information although young adult patients had consented to give family members insight (I). Athough the FCSC was experienced as new and uncomfortable, the families also regarded it as beneficial and safe
(III). It facilitated an opportunity to share and reflect on the family's beliefs, and enabled them to find new beliefs and opportunities in everyday life (III). The FCSC helped healthcare professionals to structure the involvement of family members as a complement to care as usual, although there was still a need to adjust the intervention (IV).
Conclusions: Young adults suffering from mental illness are reliant on support from family to manage everyday life. Mental healthcare professionals play an important role in facilitating a safe environment for sharing beliefs and bringing strengths and resources to the front seat in family-centered support conversations. When family are included as part of the mental healthcare team, this enhances their ability to be supportive.

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.

ABSTRACT After the spouse, children are the most likely source of informal support for an older person when the frailties of advanced old age create the need for help. Childlessness may thus be seen as particularly a problem for older people. In general, to compensate for the lack of children, childless people develop closer relationships with available next-of-kin and non-kin. Despite this, in times of need they are likely to find themselves with inadequate informal support. Using data from the Bangor Longitudinal Study of Ageing, this article explores the consequences of childlessness among persons aged 85 years or more living in rural Wales. The results indicate that by the time they reach old age, childless people have adapted to their situation and developed expectations consistent with being childfree. They have closer relationships with collateral kin, friendships are important and a high value is placed on independence. Nevertheless, unless they die suddenly or after a short acute illness, almost all of them enter residential care or a long-stay hospital at the end of their lives. It is also shown that the situation of childless people varies greatly and depends on several factors, particularly marital status, gender, social and financial capital, and on the person's earlier investment in the strengthening of next-of-kin and non-kin networks.

Sedan början av 2000-talet har det skett en markant ökning av studier
gällande barn och ungdomar och Autism. Dock är det så att den mesta
forskningen fortfarande är inom det medicinska området. Endast ett
fåtal av studierna rör vuxna med Asperger syndrom (AS) som studerar
på högskola/universitet. Samtidigt sker en ökning av personer med AS
som söker högre utbildning såsom högskola/universitet, vilket gör
forskning gällande personer med diagnosen AS högaktuell. Antalet studenter
med kognitiva funktionshinder, dit AS räknas, som sökt pedagogiskt
stöd på högskola/universitet i Sverige, har ökat från 1 427 studenter
2010 till 1 943 studenter 2012. När man studerar på högskola/universitet
så finns det pedagogiska stöd att tillgå, och till vardagen
finns Lagen om stöd och service till vissa funktionshindrade (LSS) och
Socialtjänstlagen (SoL) som personer med AS har möjligheter att söka
stöd genom. Personer med AS kan ibland ha svårt att utnyttja stödsystem
som kräver att man själv identifierar och uttalar sina behov av stöd.
Denna avhandling fokuserar på personer med AS i högre utbildning och
stöd.
I doktorsavhandlingen ingår två studier: Studie I som är en fallstudie
och Studie II, som är en enkätstudie. Bindningspunkten för studierna är
studenter med AS som fått pedagogiskt stöd i sin utbildning vid högskola/universitet.

BACKGROUND:
The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling.
METHOD:
As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in-depth, phenomenology-based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory.
RESULTS:
Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well-being, exchanging experiences, social support and dealing with the outside world.
CONCLUSIONS:
This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience.

In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.

Författare: Karin Stephansson & Robert Schelin
Syfte: Att undersöka hur det kan vara att växa upp med en bror eller syster med diagnosen
adhd, hur livssituationen/syskonskapet hanterats, samt hur de har påverkats och hur det
eventuellt fortsätter att påverka dem i vuxenlivet. Syftet var även att undersöka syskonens
upplevelser och behov av socialt stöd under uppväxten.
Frågeställningar:
• Vilka upplevelser finns hos personer som vuxit upp med ett syskon med adhd?
• Hur upplever syskon att de har påverkats av att växa upp med en bror eller syster med
adhd?
• Hur har syskonskapet hanterats?
• I vilken utsträckning finns det behov av socialt stöd under uppväxten för syskon till
barn med adhd?
Metod: Studien är kvalitativ och bygger på intervjuer med åtta personer som vuxit upp med
ett eller flera syskon med diagnosen adhd. Intervjupersonerna består av både kvinnor och män
i åldrarna 17- 29 år.
Resultat: Resultatet visade att samtliga syskon upplevt att syskonrelationen och
familjesituationen innehållit mycket bråk som enligt intervjupersonerna var mer än vanligt
syskonbråk. Samtliga intervjupersoner ansåg att det fått ta ett stort ansvar under uppväxten.
Detta har upplevts som både positivt och negativt. Det har gjort dem ansvarsfulla men några
kände även att det lagts för mycket ansvar på dem och detta alldeles för tidigt i relation till
deras dåvarande ålder. Studien kunde påvisa en koppling mellan kommunikationen inom
familjen och upplevelsen av att ha vuxit upp med ett syskon med adhd. De intervjupersoner
som ansåg att kommunikationen inom familjen varit god och öppen beskrev upplevelser och
erfarenheter av syskonskapet som mer positivt än de intervjupersoner som ansåg att
kommunikationen inom familjen varit bristfällig.
Nyckelord: Attention Deficit/Hyperactivity Disorder (adhd), syskon, coping, socialt stöd,
systemteori

Internet-based psychotherapeutic interventions have been used for more than a decade, but no comprehensive review and no extensive meta-analysis of their effectiveness have been conducted. We have collected all of the empirical articles published up to March 2006 (n = 64) that examine the effectiveness of online therapy of different forms and performed a meta-analysis of all the studies reported in them (n = 92). These studies involved a total of 9,764 clients who were treated through various Internet-based psychological interventions for a variety of problems, whose effectiveness was assessed by different types of measures. The overall mean weighted effect size was found to be 0.53 (medium effect), which is quite similar to the average effect size of traditional, face-to-face therapy. Next, we examined interacting effects of various possible relevant moderators of the effects of online therapy, including type of therapy (self-help web-based therapy versus online communication-based etherapy), type of outcome measure, time of measurement of outcome (post-therapy or follow-up), type of problem treated, therapeutic approach, and communication modality, among others. A comparison between face-to-face and Internet intervention as reported on in 14 of the studies revealed no differences in effectiveness. The findings of this meta-analysis, and review of additional Internet therapy studies not included in the meta-analysis, provide strong support for the adoption of online psychological interventions as a legitimate therapeutic activity and suggest several insights in regard to its application. Limitations of the findings and recommendations concerning Internet-based therapy and future research are discussed.

Sammanfattning

De flesta människor hamnar någon gång i en situation där de behöver ge omsorg till en närstående på grund av sjukdom, funktionsnedsättning eller hög ålder.

Socialstyrelsen genomförde 2012 en pilotundersökning för att kartlägga anhörigomsorgens omfattning och konsekvenser. Den visade bland annat att nästan var femte person äldre än 18 år ger omsorg till en närstående och att omfattande omsorg kan få stora konsekvenser för omsorgsgivarnas hälsa, sysselsättning och livskvalitet. Den här rapporten redovisar resultaten från två studier om dessa konsekvenser: Socialstyrelsen har gjort fördjupade analyser av 2012 års data och de analyserna har kompletterats med en intervjuundersökning för att illustrera vad olika situationer av anhörigomsorg kan innebära.

Sammanfattningsvis kan Socialstyrelsen konstatera följande:

Omsorg som ges av anhöriga till närstående har en samhällsbärande funktion och är inte bara ett komplement till hälso- och sjukvård och socialtjänst. I vissa fall ersätter anhörigomsorgen samhällets insatser för att de berörda vill ha det så, eller för att insatserna inte upplevs vara tillräckliga. I de flesta fall är omsorgsgivandet ett frivilligt åtagande men omfattningen och formerna är inte alltid självvalda. Det finns brister i samordningen av insatser från hälso- och sjukvård och socialtjänst för personer med stora vård- och omsorgsbehov, vilket ökar belastningen för de anhöriga som nödgas kompensera för det. Omsorgens omfattning har stor betydelse för graden av påverkan hos anhöriga. Ett stort omsorgsåtagande riskerar att försämra hälsan och livskvaliteten hos de anhöriga samt möjligheterna att förvärvsarbeta och studera, medan ett mindre omfattande åtagande kanske inte har någon negativ påverkan alls. Resultatet visar också att olika konsekvenser för hälsa och förvärvsarbete hänger nära samman och att de i sin tur formar livskvaliteten. Relationen mellan den som ger och den som tar emot omsorg har betydelse för hur givaren upplever situationen. De som ger omsorg till en ett barn tycks påverkas i högre grad när det gäller förvärvsarbete, ekonomi och livskvalitet, medan den som ger omsorg till en make, maka eller partner tycks påverkas i högre grad vad gäller hälsa. Anhöriga i åldrarna 30–44 år som ger omsorg till en närstående tycks påverkas mer än andra ål-dersgrupper vad gäller psykisk och fysisk hälsa, ekonomi och möjligheter till förvärvsarbete. För att säkerställa att omsorg som ges av anhöriga är frivillig behöver flera olika aktörer mer kunskap om anhörigas behov. Det gäller bland annat hälso- och sjukvården, socialtjänsten, arbetsgivare, Försäkringskassan och skolan. Stöd och information som erbjuds anhöriga omsorgsgivare behöver vara individuellt utformat och anpassat till både den som ger och tar emot omsorg. Patient- och anhörigorganisationer kan bidra med viktig kunskap i behovsinventeringar och vid utformande av stöd till anhöriga omsorgsgivare. Det är angeläget att fortsätta följa upp omfattningen och konsekvenserna av anhörigomsorg. Närmare en femtedel av den vuxna befolkningen ger omsorg till närstående. De omsorgsgivare som ger omfattande omsorg drabbas av konsekvenser vad gäller såväl hälsa som förvärvsarbete och livskvalitet och är därmed en utsatt grupp. Kommande uppföljningar bör ha fokus på att identifiera de grupper som i högre utsträckning påverkas negativt av att ge omsorg för att kartlägga vilka särskilda behov de har samt hur samhället på bästa sätt kan möta dessa personers behov och stödja dem i omsorgsarbetet. Därtill är det angeläget att följa upp anhöriga omsorgsgivare som är utrikes födda, eftersom tidigare studier inte lyckats fånga denna grupp.

Inte bara den som är sjuk utan även de anhöriga drabbas av psykossjukdomen. Psykiatrireformen som delvis tillkom för att stärka den psykiskt funktionshindrade individens rätt till självbestämmande, blev för många anhöriga en tung börda. De anhöriga känner sig ensamma och utan stöd, med den stress och oro som psykossjukdom innebär. Problemet har emellertid uppmärksammats och år 2009 tillkom en ny lag om utökat stöd för anhöriga till psykiskt funktionshindrade.

Anhörigas insatser inom äldreomsorgen.

Den utveckling mot ökad polarisering som visade
sig på många samhällsområden under 1990-talet
har under 2000-talet mattats av och stabiliserats.
Fler kan försörja sig på sitt arbete men den andel
som under längre tid står både utanför arbetsmarknaden
och utanför de sociala försäkringssystemen
är oförändrad (3–4 procent). Den långvariga fattigdomen
(som varar fem år eller längre) fortsatte
att minska för alla grupper. Även om inkomsterna
ökade för alla var dock inkomstökningarna större
bland höginkomsttagarna än bland dem med låga
inkomster. Därför har inkomstskillnaderna ökat.
Den etniska boendesegregationen i de tre storstadsregionerna
har stabiliserats efter att ha ökat under
hela 1990-talet, medan den ekonomiska segregationen
uppvisar en långsamt ökande trend över tid.
Sedan flera år tillbaka märks en tydlig koppling mellan
etnisk och ekonomisk segregation i storstadsregionerna.
Konjunktursvängningarna har stor betydelse
för utsatta grupper. I högkonjunktur ökar andelen
personer som kan försörja sig på sitt arbete i alla
befolkningsgrupper. Det gör att möjligheterna att
ta sig ur fattigdom och ekonomiskt biståndstagande
ökar. De som är speciellt konjunkturkänsliga
när det gäller nyetablering på arbetsmarknaden är
ungdomar som varken arbetar eller studerar under
övergångsfasen mellan skola och arbete samt nyanlända
invandrare.
Ungdomar, ensamstående mödrar samt invandrare,
främst de nyanlända och de från utomeuropeiska
länder, har hög risk för fattigdom och andra välfärdsproblem.
Välfärdsproblem kan uppträda tillsammans
och en vanlig kombination är ohälsa och
ekonomisk utsatthet. Allvarliga sjukdomar leder
ofta till försämrade ekonomiska villkor och ökad
risk för upplösning av parförhållanden.
Barn till papperslösa föräldrar har en otrygg tillvaro
och de som föds i Sverige folkbokförs inte och
kan inte identifieras genom person- eller samordningsnummer.
Detta begränsar bland annat möjligheterna
till att få kunskap om dessa barns situation
och hälsa.
I Social rapport 2010 presenteras ny kunskap
inom olika områden. För de allra flesta är fattigdom
inte bestående – hälften lämnar den redan
inom ett år. Den som en gång varit fattig löper
däremot stor risk att återigen hamna i fattigdom.
Risken att ärva sina föräldrars fattigdom är bara
något förhöjd i Sverige, däremot är det betydligt
vanligare att barn till höginkomsttagare blir välbärgade
som vuxna.
Utbildningen är en av de viktigaste faktorerna
för ungdomars framtida möjligheter. Ju tidigare
utbildningskedjan bryts desto sämre är framtidsutsikterna.
De grupper som har låga eller ofullständiga
betyg från grundskolan har kraftigt förhöjda
risker för framtida psykosociala problem.
Betygen är särskilt viktiga för utsatta barns framtidsutsikter.
Barn som växer upp i samhällets vård
eller i familjer med återkommande ekonomiskt
bistånd lämnar grundskolan med mycket lägre
betyg än andra barn och har också mycket höga
överrisker för framtida psykosociala problem.

Adolfsson M. Applying the ICF-CY to identify children's everyday life situations: a step towards participation-focused code sets

With the long-term goal to create an interdisciplinary screening tool with code sets focusing on children's participation in everyday life situations (ELS), the purpose of the present study was to identify ELS for children 0–17 years. The views of professionals and parents in Sweden, South Africa and the USA were integrated based on ICF-CY1 linkages. The chapters Self-care and Major life areas seemed most obvious to include in ELS. At the 2nd ICF-CY level, 11 categories emerged as ELS, with Hygiene and Recreation as the most obvious. Two sets of ELS were identified for infants/preschoolers and school-aged children/adolescents. Professionals and parents agreed on ELS for the older age group. Findings suggest that ELS differ in context specificity depending on maturity and growing autonomy. The study has implications for the future screening tool that is intended to support children with disabilities in describing what matters most to them in intervention planning.

Examining the assessment of need in children's services this book addresses the full spectrum of practice, policy and research developments in the field. The contributors include leading academics, policy makers and senior practitioners who generate a broad-based holistic approach to the assessment of children in need. They show how needs assessment in children's services can be used to tackle problems such as low achievement, mental ill-health and social exclusion at both individual and strategic levels.

Approaches to the Assessment of Need in Children's Services will enable service managers and practitioners to respond effectively to the increasing pressure to monitor outcomes and effectiveness in child care work, and to improve and coordinate children's welfare service provision at individual and community levels and provides an indispensable overview and analysis for anyone working or studying in child welfare and social care

The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.

Background

We examined activity-specific patterns and child, family and environmental correlates of participation restriction in nine community-based activities among preschoolers with disabilities who have received Part C early intervention services.
Methods

Data were gathered from a subsample of 1509 caregivers whose children (mean age = 67.7 months) had enrolled in the National Early Intervention Longitudinal Study (NEILS) and completed a 40-min computerized telephone interview or 12-page mailed survey. Data were analysed on cases with complete data on the variables of interest. Bivariate relationships were examined between variables, including patterns of co-reporting participation difficulties for pairs of community activities.
Results

Caregivers were more than twice as likely to report difficulty in one activity (20%) than difficulties in 2–3, 4–5, or 6–9 activities. Co-reporting paired difficulties was strong for activities pertaining to neighbourhood outings but less conclusive for community-sponsored activities and recreation and leisure activities. Our data show strong and positive associations between child functional limitations in mobility, toileting, feeding, speech, safety awareness, and friendships and participation difficulty in 7–9 activities. Lower household income was associated with participation difficulty in 7 out of 9 activities and difficulty managing problematic behaviour was strongly associated with participation difficulty in all 9 activities. Each of the three environmental variables (limited access to social support, transportation and respite) was associated with participation restrictions in all nine activities.
Conclusion

Results provide practitioners with detailed descriptive knowledge about modifiable factors related to the child, family and environment for promoting young children's community participation, as well information to support development of a comprehensive assessment tool for research and intervention planning to promote community participation for children enrolled in early intervention.

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.