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Lived experiences of ageing and later life in older people with intellectual 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.ORCID iD: 0000-0003-4740-4494
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
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.ORCID iD: 0000-0001-5295-2482
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.
2015 (English)In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 35, no 3, 602-628 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this article is to explore how older people with intellectual disability (ID), who live in group accommodation, describe their lived experience in relation to ageing and later life. The study adopted a phenomenological approach, based on the concept of life-world. Individual, qualitative interviews were conducted with twelve people with ID (five men, seven women), between the ages of 48 and 71 (m=64), who lived in four different group accommodation units in southern Sweden. A descriptive phenomenological analysis method was used, which disclosed a structure consisting of themes and subthemes. The findings of the study reveal the informants’ lived experience of ageing and later life as a multifaceted phenomenon, expressed through the two themes, “age as a process of change” and “existential aspects of ageing”, each with three sub themes. along with six substantialising[SK1]  subthemes. The body is an essential element in their experience of ageing and growing old, and in how this experience is expressed. The study also finds social, cultural and historical dimensions of the life-world to be important in the informants’ experience of ageing and later life. This supports understanding of  the existence of a collective life-world for older people with ID, the unique experiences the informants share because of their disability and its consequences for their life course.

 

Place, publisher, year, edition, pages
Cambridge University Press, 2015. Vol. 35, no 3, 602-628 p.
Keyword [en]
Intellectual disability, ageing, later life, life-world, phenomenology.
National Category
Other Social Sciences not elsewhere specified
Identifiers
URN: urn:nbn:se:liu:diva-92377DOI: 10.1017/S0144686X13000949ISI: 000357881100007OAI: oai:DiVA.org:liu-92377DiVA: diva2:620635
Available from: 2013-05-09 Created: 2013-05-09 Last updated: 2017-12-06Bibliographically approved
In thesis
1. Delaktig (även) på äldre dar: Åldrande och delaktighet bland personer med intellektuell funktionsnedsättning som bor i gruppbostad
Open this publication in new window or tab >>Delaktig (även) på äldre dar: Åldrande och delaktighet bland personer med intellektuell funktionsnedsättning som bor i gruppbostad
2015 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[en]
Participation (also) in old age : Ageing and participation among people with intellectual disabilities living in group homes
Abstract [en]

Participation of people in all ages is one of the main goals in Swedish disability policy. Despite this, ageing and becoming old with intellectual disability has been given very little attention in policy documents and guidelines regarding support and service provided for this group. This thesis aims to explore ageing and participation among older people with intellectual disabilities who live in a group homes in accordance to the Swedish Disability Act. The focus has been on the group of people who were born before or around 1960. This group belongs to a generation that share unique experiences. They have lived a long life with disability, and they have experienced first-hand the development of the Swedish disability policy that started in the 1960s and resulted in today’s disability policy. These experiences carried through life course are likely to influence this group’s opportunities to participate as they age and reach later life. The thesis has a multiple methodological approach. Participant observations were executed and combined with individual semi-structured interviews with older people with intellectual disabilities as well as group home staff. The results of this thesis show that there is a discrepancy between how older people with intellectual disabilities experience ageing and later life and how these in turn are described by the staff. The thesis also reveals how aging and becoming old is not given particular attention to in everyday discussions in the group home, and that aging is understood mainly as a physical phenomenon. The results show that the formal organizational culture of the group home is weak in relation to ageing and becoming old with intellectual disability. This is because the staff perceives a lack of preparation, discussion and working methods on how to support participation among older residents. The results also show, however, that the residents’ age does play an important role for the staff’s perceptions and attitudes regarding participation of the older residents. The concept of participation is described and  operationalized as a social contextual doing, and as an aspiration to create a sense of coherence or experience of meaning and security at home. Finally, this thesis underlines that the life course unique to persons growing old with intellectual disabilities may influence the opportunities for and the experience of participation in the group home.

Abstract [sv]

Delaktighet i alla åldrar är ett av funktionshinderspolitikens centrala mål. Trots detta har att åldras och vara äldre med intellektuell funktionsnedsättning inte uppmärksammats i politiska dokument och riktlinjer kring hur stöd och service ska ges till denna grupp. Denna avhandling syftar till att belysa och problematisera åldrande och delaktighet bland äldre personer med intellektuell funktionsnedsättning som bor i gruppbostad enligt Lagen om stöd och service till vissa funktionshindrade. I fokus står personer som är födda före eller omkring 1960. De tillhör en generation som delar unika erfarenheter. Dels har de levt ett långt liv med funktionsnedsättning, dels har de varit en del av den funktionshinderspolitiska resa som startade i Sverige under 1960-talet och som har lett fram till dagens funktionshinderspolitik. Detta är erfarenheter som de har burit med sig genom livsloppet och som kan antas påverka möjligheten till delaktighet när de åldras och blir äldre. Denna avhandling har ett multipelt metodologiskt angreppssätt i form av deltagande observation kombinerat med individuella semistrukturerade intervjuer med äldre personer med intellektuell funktionsnedsättning och deras personal. Avhandlingen visar att det finns skillnader mellan hur äldre personer med intellektuell funktionsnedsättning själva erfar att vara och bli äldre och hur detta fenomen beskrivs av gruppbostadens personal. Avhandlingen visar också att åldrande och att vara äldre inte ges utrymme i gruppbostadens vardagliga diskussioner där åldrandet främst betraktas som ett fysiskt fenomen. Avhandlingens studier belyser även att gruppbostadens formella organisationskultur är svag i förhållande till att åldras och vara äldre med intellektuell funktionsnedsättning. Detta då personalen upplever att det saknas förberedelse, diskussion och arbetsmetoder kring hur stöd för delaktighet ska erbjudas äldre boende. Resultatet visar emellertid att de boendes ålder har betydelse för personalens föreställningar och förhållningssätt gällande delaktighet bland äldre boende. Denna delaktighet beskrivs och operationaliseras dels som ett socialt kontextuellt görande, dels som en strävan efter att skapa en känsla av sammanhang och trygghet i hemmet. I tillägg till detta framkommer att den studerade generationens unika erfarenheter av att ha levt ett långt liv med intellektuell funktionsnedsättning, är betydelsefulla för hur delaktigheten ser ut i gruppbostaden och hur den beskrivs av både boende och personal.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2015. 104 + Appendix I and II p.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 638
Keyword
Old people, ageing, intellectual disability, participation, group home, Äldre, åldrande, intellektuell funktionsnedsättning, delaktighet, gruppbostad
National Category
Other Social Sciences Other Medical Sciences
Identifiers
urn:nbn:se:liu:diva-113336 (URN)10.3384/diss.diva-113336 (DOI)978-91-7519-152-2 (ISBN)
Public defence
2015-02-13, K1, Kåkenhus, Campus Norrköping, Linköpings universitet, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-01-16 Created: 2015-01-16 Last updated: 2016-08-31Bibliographically approved

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Kåhlin, IdaKjellberg, AnetteNord, CatharinaHagberg, Jan-Erik
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