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Freedom and Imperative: Mutual Care Between Older Spouses With Physical Disabilities
Linköpings universitet, NISAL - Nationella institutet för forskning om äldre och åldrande.ORCID iD: 0000-0003-0877-4759
2014 (English)In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 20, no 2, 204-225 p.Article in journal (Refereed) Published
Abstract [en]

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 relationship

Place, publisher, year, edition, pages
2014. Vol. 20, no 2, 204-225 p.
National Category
Social Sciences
URN: urn:nbn:se:hj:diva-27883DOI: 10.1177/1074840714524058ISI: 000335448500004PubMedID: 24505081ScopusID: 2-s2.0-84899643499OAI: diva2:852526
Available from: 2015-09-09 Created: 2015-09-09 Last updated: 2015-10-22Bibliographically approved
In thesis
1. Ageing and Caring as Couples with Disabilities
Open this publication in new window or tab >>Ageing and Caring as Couples with Disabilities
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Abstract [sv]

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.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2014. 82 p.
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 604
Care, physical disability, ageing, older couples, conjoint interviews, Omsorg, funktionshinder, åldrande, äldre par, parintervjuer
National Category
Social Sciences
urn:nbn:se:hj:diva-27884 (URN)10.3384/diss.diva-104808 (DOI)978-91-7519-410-3 (print) (ISBN)
Public defence
2014-03-21, K3, Kåkenhus, Campus Norrköping, 13:00 (English)
Available from: 2015-10-22 Created: 2015-09-09 Last updated: 2015-10-22Bibliographically approved

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