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Ageing and Caring as Couples with Disabilities
Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
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.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 604
Keyword [en]
Care, physical disability, ageing, older couples, conjoint interviews, Omsorg, funktionshinder, åldrande, äldre par, parintervjuer
National Category
Social Sciences
Identifiers
URN: urn:nbn:se:liu:diva-104808DOI: 10.3384/diss.diva-104808ISBN: 978-91-7519-410-3 (print)OAI: oai:DiVA.org:liu-104808DiVA: diva2:699272
Public defence
2014-03-21, K3, Kåkenhus, Campus Norrköping, Linköpings universitet, Norrköping, 13:00 (English)
Opponent
Supervisors
Available from: 2014-02-27 Created: 2014-02-27 Last updated: 2014-02-27Bibliographically approved
List of papers
1. Ageing and Care Among Disabled Couples
Open this publication in new window or tab >>Ageing and Care Among Disabled Couples
2013 (English)In: Ageing with disability: a lifecourse perspective / [ed] Eva Jeppsson Grassman and Anna Whitaker, Bristol: Policy Press, 2013, 109-127 p.Chapter in book (Other academic)
Abstract [en]

"This is the first book to address the issue of ageing after a long life with disability. It breaks new ground through its particular life course perspective, examining what it means to age with a physical or mental disability and what the implications are of 'becoming old' for people who have had extensive disabilities for many years. These people may have had to leave the labour market early, and the book looks at available care resources, both formal and informal. Ageing with disability challenges set ideas about successful ageing, as well as some of those about disabilities. The life course approach that is used unfolds important insights about the impact of multiple disabilities over time and on the phases of life. The book highlights the meaning of care in unexplored contexts, such as where ageing parents are caregivers or regarding mutual care in disabled couples. These are areas of knowledge which have, to date, been totally neglected."--Publisher's website.

Place, publisher, year, edition, pages
Bristol: Policy Press, 2013
Series
Ageing and the Lifecourse Series
Keyword
Aging, Åldrandet
National Category
Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:liu:diva-97019 (URN)978-1-44730-522-4 (ISBN)1-447-305-22-1 (print) (ISBN)1-44730-523-x (e-book) (ISBN)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2006-1621
Available from: 2013-09-03 Created: 2013-09-03 Last updated: 2014-10-27Bibliographically approved
2. Using Conjoint Interviews with Couples that have been Living with Disabilities and Illnesses for a Long Time – Implications and Insights
Open this publication in new window or tab >>Using Conjoint Interviews with Couples that have been Living with Disabilities and Illnesses for a Long Time – Implications and Insights
2013 (English)In: Qualitative Studies, ISSN 1903-7031, E-ISSN 1903-7031, Vol. 4, no 2, 100-113 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Århus: The University and State Library - Aarhus, 2013
Keyword
couples, conjoint interviews, dyadic methods, spousal care, disability
National Category
Sociology (excluding Social Work, Social Psychology and Social Anthropology)
Identifiers
urn:nbn:se:liu:diva-97021 (URN)
Projects
Forms of care in later life: Agency, Place, Time and Life Course
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2006-1621
Available from: 2013-09-03 Created: 2013-09-03 Last updated: 2017-12-06Bibliographically approved
3. Freedom and Imperative: Mutual Care Between Older Spouses With Physical Disabilities
Open this publication in new window or tab >>Freedom and Imperative: Mutual Care Between Older Spouses With Physical Disabilities
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

National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-104806 (URN)10.1177/1074840714524058 (DOI)000335448500004 ()
Available from: 2014-02-27 Created: 2014-02-27 Last updated: 2017-12-05Bibliographically approved
4. Older couples with long-term disabilities: Multiple jeopardy or successful ageing?
Open this publication in new window or tab >>Older couples with long-term disabilities: Multiple jeopardy or successful ageing?
(English)Manuscript (preprint) (Other academic)
Abstract [en]

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.

Keyword
Long-term disability, successful ageing, active ageing, couples, multiple jeopardy, conjoint interviews
National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-104807 (URN)
Note

This manuscript will not be published.

Available from: 2014-02-27 Created: 2014-02-27 Last updated: 2017-01-17Bibliographically approved

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Torgé, Cristina Joy

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