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.

A key worker has been described as a named person whom the family can approach
for advice about, and practical help with, any problem related to the disabled child.
Provision of 'key workers' or 'care coordinators' for disabled children and their families, working across health, education and social services, has often been recommended in policy guidance, most recently in the Children's National Service Framework. Up to now, research has shown that less than a third of families with severely disabled children have a key worker, but compared to those who do not have a key worker, those who do show benefits in terms of relationships with and access to services and overall quality of life. However, as more key worker services have been developed, different models of service and ways of working have proliferated and there has been no research on the outcomes for families of different types of services. This study aimed to explore the effectiveness of different models of multi-agency key worker services.

A key worker has been described as a named person whom the family can approach
for advice about, and practical help with, any problem related to the disabled child.
Provision of 'key workers' or 'care coordinators' for disabled children and their families, working across health, education and social services, has often been recommended in policy guidance, most recently in the Children's National Service Framework. Up to now, research has shown that less than a third of families with severely disabled children have a key worker, but compared to those who do not have a key worker, those who do show benefits in terms of relationships with and access to services and overall quality of life. However, as more key worker services have been developed, different models of service and ways of working have proliferated and there has been no research on the outcomes for families of different types of services. This study aimed to explore the effectiveness of different models of multi-agency key worker services.

Introduction: Play is essential to a child's development, and is a dominating component of a child's life. Forming part of a broader study aiming to explore what parents of children with cerebral palsy understand by play, and its use in therapy and home programmes, this research article focuses on how parents expand their concept of play for their children.
Method: A qualitative methodology and interpretive descriptive approach were taken. Following ethical approval, seven parents were recruited, completed an interview, and provided a contextual information sheet. An interpretive descriptive approach to analysis allowed exploration of this data.
Findings: Parents appeared to expand their concept of play beyond the conventional idea of play for typically developing children, seemingly as a result of the limitations placed on each child's play through their physical disability. Parents discussions revealed three subthemes: vicarious play, play through communication, and therapy in play.
Conclusion: Occupational therapists can help parents to understand how the concept of play can be expanded to involve ideas such as vicarious play and communication as play. Parents may then feel more comfortable in allowing their children to experience play as a primary occupation, in a less conventional way.

Anhörigkonsulenter och motsvarande yrkesgrupper har en central betydelse för innehållet i och utvecklingen av anhörigstödet i landets kommuner. Nka har därför genomfört en enkätstudie med syftet att få en nationell överblick över hur denna relativt sett nya yrkesgrupp utformar och ser på sitt arbete. Denna rapport innehåller en sammanställning av svaren på denna enkät som riktade sig till landets samtliga anhörigkonsulenter.

Kapitel i antologi

Familjen och anhöriga har på senare år fått en allt mer betydande roll i vården och omsorgen om de äldre. Till följd av nedskärningar i den offentliga sektorn sker vården av äldre allt oftare i hemmet och de anhöriga blir allt viktigare. Författaren diskuterar bakgrunden till denna utveckling, dess villkor och kännetecken och redovisar kunskapsläget när det gäller anhörigomsorg och anhörigstöd.

Betydelsen av att föra in ett tydligare anhörigperspektiv i vården och omsorgen, i synnerhet i äldreomsorgen, diskuteras liksom hur man kan utveckla bemötandet av, stödet till och samarbetet med de anhöriga.

Boken vänder sig till universitets- och högskolestudenter inom vård- och omsorgsutbildningar samt till alla som på olika sätt arbetar med att utveckla stöd till anhöriga som vårdar äldre.

Syftet med denna studie är att skapa en översikt
och en systematisk redovisning. Förhoppningen
är också att projektet utvecklas till att bli en
återkommande studie med jämnt intervall för
att på sikt bidra till större jämlikhet mellan
kommunerna och få en mer systematisk översikt.
Projektet syftar också till att inspirera kommuner
samt lyfta några exempel från kommunerna av
det som görs runt om i landet.
En sammanfattning av resultatet kommer att
finnas tillgängligt i en Excel-fil på Anhörigas
Riksförbunds hemsida, anhorigasriksforbund.se.
Excelfilen kan användas för att skaffa sig en
överblick av stöd till anhöriga och fördjupa sig
ytterligare i resultaten. Den kan också användas
i arbetet med att ta fram idéer om hur man
bygger upp och vidareutvecklar ett stöd till
anhöriga, som är tillgängligt för alla anhöriga
oavsett ålder och diagnos hos den närstående.

Under 2008 – 2009 genomförde Enheten för FoU-stöd, Regionförbundet Uppsala län ett utvecklingsprojekt tillsammans med en personalgrupp vid ett särskilt boende i Enköpings kommun samt en personalgrupp vid ett hemtjänstdistrikt i Tierps kommun.

Syftet med projektet var att införa och stärka ett anhörigperspektiv i den ordinarie äldreomsorgen. Vid uppföljning hösten 2009 framkom att flera förbättringar har genomförts i verksamheterna som en följd av projektet. Projektet presenteras i den här rapporten.

Den offentliga äldreomsorgen har sedan 1990-talet allt mer koncentrerats till personer med
omfattande hjälp-/stödbehov. Tröskeln till hemtjänst har höjts. Kunskaperna har samtidigt
ökat om omfattningen av den hjälp som anhöriga faktiskt ger och att denna hjälp även kan
innebära stora påfrestningar för de anhöriga. Detta har lett till att staten under senare år har
gjort stora satsningar för att stimulera utvecklingen av kommunernas stöd till anhöriga. Detta
stöd kan vara direkt eller indirekt. Det kan också beskrivas som synligt respektive osynligt.
Det personalen gör för den person som är sjuk eller funktionshindrad innebär, om det utförs
väl, ett indirekt stöd för den anhöriga. Det osynliga stödet handlar mycket om att ha god
kunskap om anhörigas villkor, förståelse av den anhörigas roll i omsorgsarbetet och för den
anhörigas personliga situation samt hur anhöriga betraktas och bemöts. I detta perspektiv är
stöd till anhöriga en angelägenhet inte bara för dem som arbetar med direkt anhörigstöd utan
för hela organisationen
Ett övergripande syfte med detta projekt har varit att utveckla och pröva metoder för att införa
och stärka ett anhörigperspektiv i vård och omsorgsverksamhet för äldre. Projektet har
genomförts tillsammans med personal i Örbyhus hemtjänstdistrikt i Tierps kommun och
personal på Tallgårdens särskilda boende för äldre i Enköpings kommun.
Projektet har genomförts i tre faser.
1. Analys. Syftet var här att få information om hur de berörda verksamheterna fungerar ur ett
anhörigperspektiv, detta som ett underlag för utvecklingsarbetet. Fokusgruppsintervjuer
genomfördes dels vid hemtjänsten och dels vid det särskilda boendet med såväl anhöriga som
personal samt vid ett senare tillfälle en fördjupad gruppintervju med anhöriga.
2. Intervention. En FoU-cirkel genomfördes, sex träffar à tre timmar, med personalgrupperna
vid hemtjänsten respektive det särskilda boendet. I cirkeln deltog även enhetscheferna och
anhörigkonsulent/anhörigrådgivare. Arbetet var processinriktat och gick ut på att utveckla ett
anhörigperspektiv (förståelse och medvetenhet) samt formulera en handlingsplan för ett
förhållningssätt till och samarbete med anhöriga. Ett genomgående inslag i FoU-cirkeln var
gruppdiskussioner och reflektion. Tanken var att deltagarna själva skulle skapa sin
verksamhets anhörigperspektiv och inte serveras någon färdig lösning. Resultaten från
analysfasen var, tillsammans med deltagarnas egna erfarenheter, ett viktigt grundmaterial för
diskussionerna i FoU-cirkeln. Andra inslag var föredrag om olika teman, informationsgranskning,
film, egna intervjuer med någon anhörig samt arbete med att formulera en
handlingsplan. Varje möte dokumenterades.
3 Uppföljning. Uppföljning av projektet gjordes på flera sätt. Cirka tre månader efter
projektets slut genomförde anhörigkonsulenten/-rådgivaren en gruppintervju med sina
respektive personalgrupper. Vid samma besök fick deltagarna också individuellt fylla i en
utvärderingsblankett. Ytterligare ca tre månader senare genomförde projektledningen återigen
en fokusgruppsintervju med samma frågeställning som i analysfasen samt en gruppintervju
kring frågan om hur anhörigperspektivet kan hållas levande och fortsätta att utvecklas.
Efter projektet kan konstateras att arbetsformen fungerat väl och varit uppskattad. Det kanske
mest betydelsefulla inslaget har varit möjligheten för personalen att i gruppdiskussioner
reflektera kring vad de hört i föredrag, sett i film, läst i artiklar och upplevt i egna intervjuer
7
med anhöriga. Flera exempel gavs på förändringar som genomfördes redan medan projektet
pågick. Exempel på det är införande av telefontid för ökad tillgänglighet, förbättrad
information genom pärmsystem, nya rutiner för kontaktmannaskapet samt en utvecklad
relation mellan kontaktmannen och biståndshandläggaren.

Sedan början av 1900-talet har samhällets intresse ökat för den informella, oavlönade hjälp som många människor regelbundet ger till sina närstående. "Anhöriga" har kommit i blickfånget, framför allt anhöriga till äldre. Bakgrunden är bl.a. tilltagande vård- och omsorgsbehov men också en nyvaknad insikt om det informella hjälparbetets betydelse. Men hur ska man egentligen förstå anhörigbegreppet? Vad är det för slags hjälpinsatser som anhöriga utför? Hur vanliga är de och vad består de av?

Författarna har tillsammans 100 års erfarenhet av verksamhet inom området äldre och funktionshindrade och deras familjer.

Rapporten belyser på ett insiktsfullt sätt den komplexitet i anhörigomsorg som ligger i sakens natur och diskuterar dess subtila nyanser.

Denna text är en oväderlig resurs för studenter inom vårdvetenskap, socialt arbete och rehabilitering, för personal som arbetar direkt med anhöriga i sitt dagliga arbete, för beslutsfattare med ansvar för anhörigstöd i kommunerna och för alla andra med intresse för ämnet.