“Being in-Between” : Spouses that cohabit with and provide care for their partners in nursing homes

It is increasingly possible for couples with differing care needs to move to nursing homes together. To our knowledge, this is the first study about spousal caregiving in this context. This study explores spouse and staff experiences when relatively healthy spouses cohabit with and provide care to their partners in Swedish nursing homes. The overarching theme, ?being in-between,? reflects the spouse?s overlapping role transition and the staff?s unfamiliarity with the spouse?s role. The spouses are both ?insiders? and ?outsiders? and are torn between maintaining and letting go of caregiving. Meanwhile, the staff express concern about the spouse?s need for respite yet being constantly present, and struggle to balance the staff?s and the spouse?s control of the caregiving situation. This article provides insight into the challenges experienced by spouses who accompany their partners to residential care and how to best support them in this unfamiliar role.Supplemental material for this article is available online.</p

Whose right to a “Reasonable Level of Living”? Spouses with differing care needs in Swedish nursing homes

In Sweden, eligibility to move to a nursing home is usually based on an individual needs assessment. In 2012, an amendment to the Social Services Act was enacted, giving persons with residential care the right to live with a spouse in the nursing home, even if the spouse is relatively healthy and does not need nursing care. In this article, two contrasting case studies of cohabiting couples are presented. These case studies are based on field observations and qualitative interviews with the couples and staff in two nursing homes in two Swedish municipalities. The article shows that local municipal guidelines, establishing who has the right to help and care, affect the ways that both the staff and the couple talk about the spouse’s rights and roles as a coresident in the nursing home. In the two cases, there were also different staff attitudes about the spouse’s need for support in the role as spousal caregiver

Using conjoint interviews with couples that have been living with disabilities and illnesses for a long time – implications and insights

This article discusses conjoint interviews and takes its starting point from a study with nine older couples who have been living with disabilities for a long period of time. Conjoint interviewing where dyads are interviewed together produces a different kind of data from individual interviews – specifically data that conduce different ways of talking about “we-ness” and produce interaction between the participants. This article discusses how this appeared in a study that was interested in the understandings and actualizations of spousal care when both have a disability or illness. The method leads to an analysis centered on mutuality and has potential to problematize traditional caring tasks and caring roles in the context of living with disability or chronic illness. Potentials and limitations of the method are discussed.Forms of care in later life: Agency, Place, Time and Life Cours

Freedom and Imperative : Mutual Care Between Older Spouses With Physical Disabilities

This article explores mutual caregiving between older spouses aging with physical disabilities. Nine older couples, where both partners had lived long lives with physical disabilities, were interviewed as dyads about mutual caregiving. The couples not only had access to different kinds and degrees of formal support but also provided mutual care to each other in a variety of ways. Interview coding using grounded theory led to two overarching categories from which motivation for mutual caregiving could be understood. These categories were Mutual care as freedom and Mutual care as imperative. The results extend understanding about how older couples with disabilities attached meaning to their mutual caregiving, and why mutual care was sometimes preferable, despite the availability of other sources of help and despite practical difficulties of providing this help. These findings suggest that health care professionals need to be sensitive to the dynamics of the couple relationship and carefully explore the couple’s preferences for how formal support can best be provided in ways that honor and sustain the integrity of the couple relationshi

Ageing and Caring as Couples with Disabilities

In gerontology and care research, care is often studied in ways in which older people and people with disabilities are portrayed as dependent on the care of younger or non-disabled people. This thesis, in contrast, studies care provided by people that are both old and have physical disabilities. The thesis explores how care is actualized and experienced by older couples who both have long-term or lifelong disabilities, and investigates the implications of this caring in the couples’ lives. Nine couples between 60 and 84 years old, of whom most had had disabilities for over 20 years, were interviewed as dyads; a process also conjoint interviewing. These interviews were analysed using grounded theory methods of coding and constant comparison. The results of the thesis confirm that it can make sense to be a carer even if one also needs care in everyday life. The analysis considers how conjoint interviewing resulted in relational and performative data about mutual care. The study helps explain the significance helping a partner despite having other sources of formal support and the difficulties of providing this help oneself. Finally, in a study whose participants are growing old together with disabilities, the results also show that the couples could regard themselves as ageing advantageously compared to other groups. Through its focus on caring for and by older people with disabilities, this thesis is at the intersection of social gerontology, care research and disability studies. However, from its interdisciplinary perspective, it can also challenge established discourses in these fields. Specifically, the study problematizes the absence of a care discourse in disability studies and the mostly age- and function-coded ways in which care is discussed in care research. The thesis problematizes dichotomies used in understanding care, such as roles of carers/care receiver and caring/servicing. It also challenges established ways of thinking about successful ageing. Lastly, the thesis contributes to the still growing literature on ageing with a disability.Gerontologin och omsorgsforskningen beskriver oftast äldre och personer med funktionshinder som mottagare av omsorg från yngre personer eller personer utan funktionshinder. Denna avhandling studerar däremot det omsorgsarbete som utförs av äldre personer med fysiska funktionshinder. Avhandlingen behandlar hur omsorg kan se ut och hur den kan förstås hos par där båda har levt långa liv med fysiska funktionshinder. Den studerar också vad den ömsesidiga omsorgen kan ha för innebörder i parens liv. Nio par mellan 60 och 84 års ålder, där många har haft funktionshinder i 20 år eller mer, intervjuades tillsammans som ett par, i s.k. conjoint interviews (parintervjuer). Analysen gjordes med hjälp av analytiska verktyg från grundad teori. Avhandlingens resultat visar att det går att vara omsorgsgivare trots att man själv har omfattande omsorgsbehov. Analysen beaktar emellertid också hur parintervjuerna kan ha bidragit till dessa berättelser av ömsesidig omsorg. Betydelsen av att kunna fortsätta att ge hjälp till en partner trots tillgång till den formella hjälpapparaten och egna svårigheter att ge hjälp diskuteras. Och till sist, trots att informanterna åldras med sina funktionshinder, visar resultaten på att paren anser sig själva att ha ett gott åldrande, och till och med bättre åldrande än andra grupper. Avhandingen befinner sig i gränslandet mellan socialgerontologi, omsorgs-forskning och funktionshinderforskning. Men genom den interdisciplinära ansatsen har några av de etablerade diskurserna inom dessa fält kunnat utmanas. En omsorgsdiskurs har länge saknats i  funktionshindersammanhang. Där har istället autonomi och oberoende stått i fokus. Avhandlingens resultat bidrar till en problematisering av de underliggande dikotomier som omsorgsbegreppet bygger på, såsom omsorgsgivare/omsorgstagare och omsorg/personlig service. Resultaten problematiserar också etablerade begrepp inom socialgerontologin som successful ageing (framgångsrikt åldrande eller det goda åldrandet). Till sist bidrar avhandlingen till den nu växande forskningen om att åldras med funktionshinder

Delaktighet i hälso- och sjukvård i Jönköpings kommun

Under de senaste decennierna har det skett en rad organisatoriska förändringar inom vård och omsorg. En av de stora konsekvenserna av förändringarna är ett utökat hälso- och sjukvårds-ansvar för kommunerna i landet. Inom hälso- och sjukvården har det också skett lagföränd-ringar, där bland annat delaktighet lyfts fram tydligare nu. Den här studien syftade därför till att undersöka hur personer som erhåller hälso- och sjukvård i kommunen uppfattar sin del-aktighet i planering, genomförande och uppföljning av hälso- och sjukvårdsinsatser. Studien omfattar tre olika kontexter; 1) hälso- och sjukvård i ordinärt boende, 2) hälso- och sjukvård i särskilt boende för äldre samt 3) hälso- och sjukvård i boende inom socialpsykiatrin. Olika metoder har använts (enkäter i studie 1 och 3 och intervjuer i studie 2) och rapporten är därför uppbyggd i tre delar. Resultaten visar dock att delaktighet är viktigt för personerna i samtliga tre kontexter men att det kan vara svårt att sätta ord på vad delaktighet egentligen betyder. Personer som ingår i studien ger flera goda exempel på när de känt sig delaktiga, men även det motsatta. Delaktighet är således en fråga som ständigt är aktuell och som man ständigt behöver arbeta med.  

Older couples with long-term disabilities : Multiple jeopardy or successful ageing?

In a study where older couples who had lived long lives with physical disabilities were interviewed about mutual care, an unexpected finding that while the couples reported worsening disabilities, they also described themselves as advantaged, and as maintaining a high level of activity in some areas of life. In this article, we investigate how the couples achieve this sense of ageing successfully when the participants’ stories of physical decline, from an outsider’s perspective, might be thought to produce double-, triple- or multiple jeopardy. The results show how the couples use different types of reference groups and refer to various resources to frame themselves as privileged. Furthermore, through environmental adaptations, technical aids and supportive services, they managed to maintain a high level of activity, despite living with disabilities. Notably, the couples described themselves as advantaged by referring to being older, to the long life with disabilities and to ageing with disabilities together. The overarching ambition of the article is to problematize established notions of successful ageing. Considering that the couples referred to the very conditions that might be seen as disadvantageous,  the problem of pre-defined criteria for successful ageing becomes particularly apparent.This manuscript will not be published.</p

Older couples with long-term disabilities : Multiple jeopardy or successful ageing?

In a study where older couples who had lived long lives with physical disabilities were interviewed about mutual care, an unexpected finding that while the couples reported worsening disabilities, they also described themselves as advantaged, and as maintaining a high level of activity in some areas of life. In this article, we investigate how the couples achieve this sense of ageing successfully when the participants’ stories of physical decline, from an outsider’s perspective, might be thought to produce double-, triple- or multiple jeopardy. The results show how the couples use different types of reference groups and refer to various resources to frame themselves as privileged. Furthermore, through environmental adaptations, technical aids and supportive services, they managed to maintain a high level of activity, despite living with disabilities. Notably, the couples described themselves as advantaged by referring to being older, to the long life with disabilities and to ageing with disabilities together. The overarching ambition of the article is to problematize established notions of successful ageing. Considering that the couples referred to the very conditions that might be seen as disadvantageous,  the problem of pre-defined criteria for successful ageing becomes particularly apparent.This manuscript will not be published.</p

Older couples with long-term disabilities : Multiple jeopardy or successful ageing?

In a study where older couples who had lived long lives with physical disabilities were interviewed about mutual care, an unexpected finding that while the couples reported worsening disabilities, they also described themselves as advantaged, and as maintaining a high level of activity in some areas of life. In this article, we investigate how the couples achieve this sense of ageing successfully when the participants’ stories of physical decline, from an outsider’s perspective, might be thought to produce double-, triple- or multiple jeopardy. The results show how the couples use different types of reference groups and refer to various resources to frame themselves as privileged. Furthermore, through environmental adaptations, technical aids and supportive services, they managed to maintain a high level of activity, despite living with disabilities. Notably, the couples described themselves as advantaged by referring to being older, to the long life with disabilities and to ageing with disabilities together. The overarching ambition of the article is to problematize established notions of successful ageing. Considering that the couples referred to the very conditions that might be seen as disadvantageous,  the problem of pre-defined criteria for successful ageing becomes particularly apparent.This manuscript will not be published.</p