Bibliotek

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.

This study evaluated the efficacy of 2 theory-based preventive interventions for divorced families: a program for mothers and a dual component mother-child program. The mother program targeted mother-child relationship quality, discipline, interparental conflict, and the father-child relationship. The child program targeted active coping, avoidant coping, appraisals of divorce stressors, and mother-child relationship quality. Families with a 9- to 12-year-old child (N = 240) were randomly assigned to the mother, dual-component, or self-study program. Postintervention comparisons showed significant positive program effects of the mother program versus self-study condition on relationship quality, discipline, attitude toward father-child contact, and adjustment problems. For several outcomes, more positive effects occurred in families with poorer initial functioning. Program effects on externalizing problems were maintained at 6-month follow-up. A few additive effects of the dual-component program occurred for the putative mediators; none occurred for adjustment problems

AIMS:
Children whose parents abuse drugs are exposed to numerous factors that increase the likelihood of future drug abuse. Despite this heightened risk, few experimental tests of prevention programs with this population have been reported. This article examines whether intensive family-focused interventions with methadone treated parents can reduce parents' drug use and prevent children's initiation of drug use.
DESIGN:
Parents were assigned randomly into intervention and control conditions and assessed at baseline, post-test, and 6 and 12 months following the intervention. Children were assessed at baseline, and 6- and 12-month follow-up points.
SETTING:
Two methadone clinics in Seattle, Washington.
PARTICIPANTS:
One hundred and forty-four methadone-treated parents, and their children (n = 178) ranging in age from 3 to 14 years old.
INTERVENTION:
The experimental intervention supplemented methadone treatment with 33 sessions of family training combined with 9 months of home-based case management. Families in the control condition received no supplemental services.
MEASUREMENT:
Parent measures included: relapse and problem-solving skills, self-report measures of family management practices, deviant peer networks, domestic conflict and drug use. Child measures included self-report measures of rules, family attachment, parental involvement, school attachment and misbehavior, negative peers, substance use and delinquency.
FINDINGS:
One year after the family skills training, results indicate significant positive changes among parents, especially in the areas of parent skills, parent drug use, deviant peers and family management. Few changes were noted in children's behavior or attitudes.
CONCLUSIONS:
Programs such as this may be an important adjunct to treatment programs, helping to strengthen family bonding and to reduce parents' drug use.

AIMS:
Children whose parents abuse drugs are exposed to numerous factors that increase the likelihood of future drug abuse. Despite this heightened risk, few experimental tests of prevention programs with this population have been reported. This article examines whether intensive family-focused interventions with methadone treated parents can reduce parents' drug use and prevent children's initiation of drug use.
DESIGN:
Parents were assigned randomly into intervention and control conditions and assessed at baseline, post-test, and 6 and 12 months following the intervention. Children were assessed at baseline, and 6- and 12-month follow-up points.
SETTING:
Two methadone clinics in Seattle, Washington.
PARTICIPANTS:
One hundred and forty-four methadone-treated parents, and their children (n = 178) ranging in age from 3 to 14 years old.
INTERVENTION:
The experimental intervention supplemented methadone treatment with 33 sessions of family training combined with 9 months of home-based case management. Families in the control condition received no supplemental services.
MEASUREMENT:
Parent measures included: relapse and problem-solving skills, self-report measures of family management practices, deviant peer networks, domestic conflict and drug use. Child measures included self-report measures of rules, family attachment, parental involvement, school attachment and misbehavior, negative peers, substance use and delinquency.
FINDINGS:
One year after the family skills training, results indicate significant positive changes among parents, especially in the areas of parent skills, parent drug use, deviant peers and family management. Few changes were noted in children's behavior or attitudes.
CONCLUSIONS:
Programs such as this may be an important adjunct to treatment programs, helping to strengthen family bonding and to reduce parents' drug use.

OBJECTIVES:
To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life.
SETTING:
East Dorset Health Authority.
SUBJECTS:
Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial.
DESIGN:
Qualitative methods.
METHODS:
Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life.
RESULTS:
Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves.
CONCLUSIONS:
Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.

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.

PURPOSE OF REVIEW: This article examines interventions aimed at improving
psychological outcomes (e.g., caregiver burden, quality of life, anxiety,
depression, perceived control, stress mastery, caregiver confidence and
preparedness, and caregiver mastery) in family caregivers of patients with heart
failure.
RECENT FINDINGS: Eight studies meeting the inclusion criteria were included in
the review. The most common intervention involved psychoeducation facilitated by
a nurse (6/8) and supplemented with a combination of follow-up face-to-face
sessions (2/6), home visits (2/6), telephone calls (3/6), and telemonitoring
(3/6). Two studies used a support group intervention of four to six sessions.
Half of the interventions reported a significant effect on one or more primary
outcomes, including caregiver burden (n = 4), depressive symptoms (n = 1), stress
mastery (n = 1), caregiver confidence and preparedness (n = 1), and caregiver
mastery (n = 1).
SUMMARY: Compared with dementia and cancer family caregiving, few interventions
have been evaluated in caregivers of patients with heart failure. Of the existing
interventions identified in this review, considerable variability was observed in
aims, intervention content, delivery methods, duration, intensity, methodological
rigor, outcomes, and effects. Given this current state of the science, direct
comparison of heart failure caregiver interventions and recommendations for
clinical practice are premature. Thus, research priority is strongly warranted
for intervention development and testing to enhance heart failure caregiver
support and education.

PURPOSE:
To investigate whether there are differences in participation in leisure activities between children with and without disabilities in Sweden, Norway and the Netherlands and how much personal and environmental factors explain leisure performance.
METHODS:
In a cross-sectional analytic design, the Children's Assessment of Participation and Enjoyment, CAPE, was performed with 278 children with disabilities and 599 children without disabilities aged 6-17 years. A one-way between-groups ANOVA explored the differences in participation between the countries. Hierarchical multiple regression analysis assessed if age, gender, educational level, living area and country of residence explained the variance in participation.
RESULTS:
Scandinavian children with disabilities participated in more activities with higher frequency compared to Dutch children. The strongest predictor was country of residence. For children without disabilities, differences existed in informal activities, the strongest predictor was gender.
CONCLUSION:
Differences in school- and support systems between the countries seem to influence patterns of participation, affecting children with disabilities most.

Abstract
The ACTION project uses information and communication technology to support frail elderly people and their family carers. The aims are to enhance their quality of life, independence and preparedness and to break social isolation. A videoconferencing system, connecting homes and a call centre, was used in a pilot study in 1997 - 2002. A re-designed system was brought into use in late 2004 and over 60 new units were introduced during the first six months. The new system was evaluated with an interview study and by data logging. Eight family users and four professional carers were interviewed. The family users had used the videophone at least six times and they had had the equipment at home for at least two months. The average number of initiated calls per user was 5.7 per month and the average call time per user was 40 min per month. Seven of the users (88%) reported that the system very much reduced their sense of loneliness and isolation. The results of the evaluation were encouraging. There were several frequent users of videoconferencing. System quality was acceptable although a shorter audio delay would be desirable. The system was used regularly by the participants and it fulfilled its purpose.

OBJECTIVES: This study evaluated an intervention designed to improve behavioral and mental health outcomes among adolescents and their parents with AIDS. METHODS: Parents with AIDS (n = 307) and their adolescent children (n = 412) were randomly assigned to an intensive intervention or a standard care control condition. Ninety-five percent of subjects were reassessed at least once annually over 2 years. RESULTS: Adolescents in the intensive intervention condition reported significantly lower levels of emotional distress, of multiple problem behaviors, of conduct problems, and of family-related stressors and higher levels of self-esteem than adolescents in the standard care condition. Parents with AIDS in the intervention condition also reported significantly lower levels of emotional distress and multiple problem behaviors. Coping style, levels of disclosure regarding serostatus, and formation of legal custody plans were similar across intervention conditions. CONCLUSIONS: Interventions can reduce the long-term impact of parents' HIV status on themselves and their children

Abstract
OBJECTIVES:
This study evaluated an intervention designed to improve behavioral and mental health outcomes among adolescents and their parents with AIDS.
METHODS:
Parents with AIDS (n = 307) and their adolescent children (n = 412) were randomly assigned to an intensive intervention or a standard care control condition. Ninety-five percent of subjects were reassessed at least once annually over 2 years.
RESULTS:
Adolescents in the intensive intervention condition reported significantly lower levels of emotional distress, of multiple problem behaviors, of conduct problems, and of family-related stressors and higher levels of self-esteem than adolescents in the standard care condition. Parents with AIDS in the intervention condition also reported significantly lower levels of emotional distress and multiple problem behaviors. Coping style, levels of disclosure regarding serostatus, and formation of legal custody plans were similar across intervention conditions.
CONCLUSIONS:
Interventions can reduce the long-term impact of parents' HIV status on themselves and their children.

Aim: To study the effects of alcohol and coping intervention among University students who have parents with alcohol problems. Methods: A total of 82 university students (56 women and 22 men, average age 25) with at least one parent with alcohol problems were included. The students were randomly assigned to one of three programs: (i) alcohol intervention program, (ii) coping intervention program, and (iii) combination program. All programs were manual based and individually implemented during two 2-h sessions, 4 weeks apart. This assessment contained both a face-to-face interview and six self-completion questionnaires; AUDIT, SIP, EBAC, coping with parents' abuse questionnaire, SCL-90 and ISSI. Follow-up interviews were conducted after 1 year. Results: All participants finished the baseline assessment, accepted and completed the intervention, while 95% of the students completed the 12-month follow-up assessment. The two groups that received alcohol intervention improved their drinking pattern significantly more than the group that did not receive alcohol intervention [change of standardized scores -0.27 (CI -0.53 to -0.03)]. The groups receiving coping intervention did not differ from the group not receiving coping intervention concerning their ability to cope with their parents' alcohol problems. Nor did they differ regarding changes in their own mental health or in their social interaction capacity. Conclusion: The intervention improved drinking patterns in adult children of alcoholics.

Although more is understood about childhood cancer's impact on the often forgotten siblings in the family, developing empirically tested interventions that support positive health outcomes is only just emerging. As family support is of key importance in sibling adjustment, further knowledge about their needs is crucial to the development of effective interventions. This investigation focused on examining parental perceptions regarding the concerns and issues for siblings of children with cancer and explored what support is helpful. Focus group methods were used to gather the data with probe questions developed from the literature and from clinical experience. Emergent topics generated were further analyzed using content analysis with 3 major topics identified: the universality of losses arising from the illness experience, behavioral challenges and adaptation, and parent-sibling communication. Parents also discussed helpful interventions. These are described and discussed in relation to the literature. The information obtained will contribute to developing interventions for siblings, specifically to produce a protocol for a therapeutic peer-support camp.

Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.

Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.

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

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.

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.

På senare år har olika typer av stödprogram utvecklats, riktade till anhöriga som vårdar, hjälper eller ger stöd till personer med stroke. Det finns dock ingen konsensus kring vilket innehåll stödprogrammen bör ha, om en viss typ av stödprogram är mer effektiva och bör rekommenderas före andra eller om det saknas en viss typ av stödprogram. Syftet med denna kunskapsöversikt var därför att identifiera och presentera relevant litteratur som beskriver stödprogram riktade till anhöriga, som på olika sätt ger stödinsatser till vuxna personer med stroke, samt stödprogrammens betydelse och eventuell effekt för anhöriga. Syftet var också att ge rekommendationer för insatser inom vård och omsorg och för framtida forskning.

Omsorg människor emellan, det vill säga vård, hjälp eller stöd som ges till närstående på grund av sjukdom, funktionsnedsättning eller hög ålder, utgör en självklar del av livet för de allra flesta. Att ge omsorg kan handla om allt från att hjälpa med praktiska sysslor, ekonomi, kontakt med vård och omsorg, personlig omvårdnad, tillsyn, stimulans och umgänge. Den här rapporten presenterar resultaten av en befolkningsstudie med fokus uteslutande på omsorgsgivarens perspektiv som genomförts av Socialstyrelsen på uppdrag av regeringen. Studien genomfördes som en postenkät till ett slumpmässigt urval om cirka 15 000 individer i befolkningen, 18 år och äldre, under början av 2012. Studien belyser hur många som ger omsorg och till vem. Den beskriver också olika former av omsorg som ges och vad detta får för konsekvenser för omsorgsgivarens hälsa, sociala relationer, ekonomi och möjligheter att arbeta. Slutligen beskriver den erfarenheter av och förväntningarna på sjukvårdens och socialtjänstens stöd till omsorgsgivare.

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.

Internationella forskningsresultat visar att ett omfattande omsorgsansvar har en negativ påverkan på arbetslivet. I denna kunskapsöversikt ges förslag på stöd och hjälp som efterfrågas av anhöriga som kombinerar anhörigomsorg och förvärvsarbete.

Den 1 juli 2009 infördes en ändring i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, som tydliggör att socialtjänsten ska erbjuda stöd för att underlätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en person med funktionsnedsättning. Anhörigstödet ska kännetecknas av individualisering, flexibilitet och kvalitet. Regionerna saknar motsvarande skyldighet, men hälso- och sjukvården har ett ansvar att identifiera och arbeta hälsofrämjande och förebyggande med personer eller grupper som riskerar att drabbas av ohälsa. Eftersom många anhöriga riskerar just detta har regeringen tidigare markerat att de omfattas av detta ansvar. Denna rapport redovisar ett regeringsuppdrag till Socialstyrelsen att lämna ett samlat underlag för en bred nationell strategi för anhöriga som vårdar eller stödjer närstående äldre personer. Syftet med den kommande strategin är att utifrån bästa tillgängliga kunskap bidra till att stöd till anhöriga som vårdar eller stödjer en närstående äldre är tillgängligt och utformat efter behov

Anhöriga som vårdar eller stödjer en närstående ska erbjudas stöd, enligt en ny bestämmelse i socialtjänstlagen. Bestämmelsen innebär att många kommuner behöver uppmärksamma målgrupper som de inte har uppmärksammat tidigare. En av dessa målgrupper är anhöriga till personer med långvarig psykisk sjukdom eller psykisk funktionsnedsättning. Mats Ewertzon – doktorand vid Örebro universitet och adjunkt vid Högskolan Dalarna – beskriver här de anhörigas situation och resonerar
kring hur stödet kan utformas. Artikeln är den första av två som handlar om stöd till målgruppen

Detta är en studie över anhöriga och närståendes uppfattningar om psyko-pedagogisk anhörigundervisning som genomförts vid Psykosvårdens utrednings- och behandlingsenhet, Psykiatriska kliniken Örebro.