Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called ‘working carers’, there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support. This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT. An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff’s experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers’ experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV). Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened. In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers’ needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier. Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers’ deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.

This qualitative study aims to explore the parents’ or other family members’ experiences in participating in music therapy sessions with their children with special needs. This aim leads to three research questions which were; 1) Can music therapy help to achieve aims set out for individual children with special needs and their parents or other family members 2) What are the functions of music therapy in nurturing communication between the parents or other family members and their children? and 3) How can the music therapist develop ways in which parents or other family members can use music to help their children? Six children who are attending the Special Education Centre, region 9 in Thailand, aged four to twelve years old with their family members who are their primary carers, participated in 24 music therapy sessions. Each session was videoed and the video recordings were discussed every two weeks with the carers. The carers were interviewed three times by the research assistants. Interpretative Phenomenological Analysis was employ to evaluate data collected from interviews. Furthermore, there were two home visits, one after a month when the 24th session was finished and another visit was two months after the 24th session was finished. From the interview analysis, there are 28 themes under five categories namely: 1) The carers’ expectations of the music therapy 2) The carers’ experience of seeing their children in the music therapy sessions 3) The carers’ experiences of seeing themselves in the sessions 4) The carers’ experiences of reviewing the video recordings from the music therapy sessions and 5) The carers’ experiences of using music at home. It can be summarised that music therapy made a positive impact on the children and their carers. The finding highlighted how the music therapy enhanced the social and communication skills of the children. Moreover, involving the carers in the sessions enabled the carers to have positive experiences with their children and these experiences led the carers to see and interact with their children differently. The findings suggest the ways to work with the carers in a therapeutic process and how to encourage the carers to use music at home with their children.

Bakgrund: Demenssjukdomar är en av de vanligaste sjukdomarna idag. Beräknat finns det ca 47,5 miljoner människor världen över som har någon typ av demenssjukdom, varav 150 000 personer finns i Sverige. Syfte: Syftet är att beskriva hur anhöriga som vårdar personer med demenssjukdom upplever sitt dagliga liv. Metod: En kvalitativ litteraturöversikt har använts där data har samlats in från kvalitativa studier som sedan analyserats induktivt. Resultat: Anhöriga upplever att det är många negativa känslor involverade i att vara anhörigvårdare, så som stress, depression och att uppleva börda. Dock anser anhöriga att inte allt är negativt. Trots att framtiden kan se mörk ut finns det ändå det som är positivt. Dessa känslor är oftast glädje, kärlek och att de växer som personer. Anhöriga använder sig även av en rad strategier för att underlätta vardagen såsom att göra olika aktiviteter. Slutsats: Det är väldigt påfrestande att vara anhörigvårdare till en person med demenssjukdom. Flera negativa känslor kan uppstå men även positiva känslor kan upplevas. Det krävs kunskap om sig själv som anhörig men även om sjukdomen som personen har som vårdas. / Background: Dementia counts as one of the most common diseases today. Estimated, there are around 47.5 million people worldwide that has some kind of dementia, of which 150 000 persons are in Sweden. Purpose: The aim of the study is to describe relatives caring for persons with dementia are experiencing daily life. Method: A literature review has been used where data has been collected from qualitative studies and later been analyzed inductively. Results: Relatives experience that there are many negative emotions involved when they’re caring for someone with dementia. Emotions such as stress, depression and the feeling of carrying a burden. However, not everything is seen as negative. Although the future may not look so bright, there is still a lot of positive feelings involved. Some of the most common are joy, love, and the feeling of personal growth. Conclusion: It's highly stressful to be a family carer to a person with dementia. Several negative feelings may arise, but also positive emotions will be experienced. It requires knowledge of oneself as a relative but also about the disease that the person is being cared for.

Yes / . Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes. Methods. We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews. Results. Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family’s (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia. Conclusion. Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently / This research was supported by the UK Economic and Social Research Council and the National Institute of Health Research Grant number NIHR/ESRC (S.R., P.R, L.M., G.L., C.C., S.C., ES/L 001780/1); the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care North Thames at Bart’s Health NHS Trust (SR, PP, GL); the UCLH NIHR Biomedical Research Centre (GL, CC); and the Johns Hopkins Alzheimer’s Disease Research Center (C.L., P50AG005146, PI: Albert).

In later life, the death of a family member occurs most often after a challenging time of family caring. It denotes a dramatic event in families’ lives, and involves intense feelings for all. To date, bereavement has mainly been investigated as an intrapersonal process from the perspective of family carers or widow/ers. Little is known about families’ experience when an adult member has died. A review of pertinent literature located only six adult family bereavement studies, which exposed the importance of family cohesion, communication and emotion, and found that family characteristics denote the background from which families make sense of the death. Despite these insights, a dearth of research exists about families’ lived relational world after a death late in life. Such knowledge is needed to better grasp bereaved families’ life-world and to discern their capacities and adversities, which shape their support needs. The purpose of this hermeneutic-phenomenological inquiry was to disclose meaning patterns and practices of families living with the loss of a close other. It included ten bereaved community-dwelling families, represented by widow/ers (mean age 80y), adult children, in-laws and grandchildren (n=30). Family was defined as a situated, relational involvement by those who feel close, and living with loss was seen as a process of changing relationships. A combination of in-depth family group (n=21) and solo interviews (n=16) were held six to 23 months after the death, and field-notes were written. The thematic and narrative analysis, embedded in a hermeneutic movement, involved reading, reflecting, and writing about gleaned data, fore-understandings, and emerging insights. Findings revealed that families’ life with loss is a world shared, and a world apart. Families collectively looked back to weave the death into their family narrative, and in so doing, constructed a story of a good death, compared-contrasted it with other deaths and events, and situated it within their multi-generational family context. Families lived with their loss by sharing-not sharing interpretations and daily lives. They connected via remembering, talking, spend-ing time, and enacting presence, but they disconnected for a variety of reasons. Families moved forward by continuing or reconstructing their family being and doing. While some families faced upheaval, others continued with little change. These findings need to be seen as situated, temporal constructs of prolonged researcher-participant engagements. They yield insights into families’ world based on the accounts of ten traditional families. Even so, this study adds a much needed empirical family perspective on bereavement. Family relations arose as interplay of different, contradicting forces at play, which moved members together and apart in their daily lives with loss. As such, it supports family models that emphasize the multivocal, relational, contextual, and continuously shifting nature of family health. It revealed that families hold an inherent capacity to make meaning of the death and enact family thereafter, and understand their relationships as resource. Thus, families may not need professional therapeutic interventions to redress their “functioning” or to avert “adverse” outcomes, but health promoting and relationship-strengthening care and services. Nurses can be helpful to families by facilitating meaning-making, strengthening family relations in a way that values multiple voices at play, and by supporting family transition and caring in light of present concerns.

Bakgrund: Amyotrofisk lateralskleros (ALS) är progredierande sjukdom som drabbar nervcellerna vilka styr muskulaturen med koldioxidnarkos vilket är den vanligast dödsorsaken inom tre till fem år. Det är vanligt att anhöriga agerar vårdare till den sjuke vilket kan leda till ökad stress och börda för anhörigvårdaren.   Syfte: Syftet var att beskriva anhörigvårdares upplevelser av att vårda närstående med ALS.Metod:Kvalitativ litteraturstudie av tio vetenskapliga artiklar från databaserna; PubMed, CINAHL, PsyHub, Web of Science som analyserades utifrån Fribergs femstegsmodell.  Resultat: Tre huvudteman identifierades samt ten subteman. Framtagna huvudteman var; Omvälvande Känslor, Att förändras i sin roll samt Strategier för att orka. Slutsats: Anhörigvårdare till närstående med ALS upplevde ständigt nya problem, ökad börda och fler uppoffringar. Förhållandet till den sjuke förändrades när relationen gick från anhörig till vårdare och känslan av normalitet blev svår att upprätthålla. Upplevelserna av extern vårdpersonal var splittrad med både goda och sämre erfarenheter. Familjecentrerat förhållningsätt bör användas inom vården för att anhörigvårdares behov ska mötas. / Background: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative neuromuscular disease affecting the motor neurons with eventual death due to respiratory failure within three to five years. It is common for family members or friends to nurse patients which can lead to increased stress and burden for the family carers.   Aim: The aim of this study was to describe family carers experiences of caring for a relative with ALS.Methods:Qualitative literature study of ten scientific papers taken from four databases; “PubMed”, “CINAHL”, PsyHub” and “Web of Science”. These were analysed using Fribergs five step model. Results: 3 main themes were identified alongside 10 subthemes. The main themes consisted of; Turbulent Emotions, The change in one’s role, Strategies to manage.  Conclusion: Family carers with relatives inflicted with ALS experienced increased burden of new responsibilities, increased strain, and forfeiture of one’s normality. The relationship with the afflicted individual changed from family member/friend to carer. Family carers found that the quality of care given by external care staff was inconsistent. Family focus care needs to be more prevalent to meet the needs of family carers.

No description available.

The purpose of this study is to understand how street-level bureaucrats, working with clients with mental illness, are implementing their statutory obligation of support for family carers who are caring for or supporting relatives with mental illness. The study are based on vignettes and qualitative interviews with social workers in three different municipalities in southern Sweden.   The questions of this study are: • How do the social workers communicate their statutory obligation of support to family carers? • How do the social workers distinguish the family carers? • How do the social workers distinguish the family carers who are in need of support?   Metod: Vignettes and qualitative interviews has been used as methods to gather empirical data. Theory: Theories of street-level bureaucracy has been used as theory in the analyses of the empirical material. Results: The result of this study concludes that the social workers, in lack of policy introduction, communicate their obligation to support family carers within their discretion. The result shows that the majority of the municipalities do not have formalized support for family carers supporting relatives with mental illness. The study also concludes that the social workers have different understandings of which family carer who is a carer in need of support. How the social workers, within their discretion, distinguish a carer in need affects which family carers who are offered support. The study also concludes that the social workers have different understandings of which family carers are in need of support.