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Delaktig (även) på äldre dar: Åldrande och delaktighet bland personer med intellektuell funktionsnedsättning som bor i gruppbostad
Linköping University, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.ORCID iD: 0000-0003-4740-4494
2015 (Swedish)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Participation (also) in old age : Ageing and participation among people with intellectual disabilities living in group homes (English)
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 [en]
Old people, ageing, intellectual disability, participation, group home
Keyword [sv]
Äldre, åldrande, intellektuell funktionsnedsättning, delaktighet, gruppbostad
National Category
Other Social Sciences Other Medical Sciences
Identifiers
URN: urn:nbn:se:liu:diva-113336DOI: 10.3384/diss.diva-113336ISBN: 978-91-7519-152-2 (print)OAI: oai:DiVA.org:liu-113336DiVA: diva2:781377
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
List of papers
1. Lived experiences of ageing and later life in older people with intellectual disabilities
Open this publication in new window or tab >>Lived experiences of ageing and later life in older people with intellectual disabilities
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
Keyword
Intellectual disability, ageing, later life, life-world, phenomenology.
National Category
Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:liu:diva-92377 (URN)10.1017/S0144686X13000949 (DOI)000357881100007 ()
Available from: 2013-05-09 Created: 2013-05-09 Last updated: 2017-12-06Bibliographically approved
2. Ageing in people with intellectual disability as it is understood by group home staff
Open this publication in new window or tab >>Ageing in people with intellectual disability as it is understood by group home staff
2016 (English)In: Journal of Intellectual & Developmental Disability, ISSN 1366-8250, E-ISSN 1469-9532, Vol. 41, no 1Article in journal (Refereed) Published
Abstract [en]

The number of older residents in group homes for people with intellectual disability (ID) is increasing. This interview study was focused on how group home staff addresses issues of ageing and being old among people with ID. Twelve members of staff at four different group homes in Sweden were interviewed. Findings revealed old age as something unarticulated in the group home. Group home staff felt unprepared to meet age-related changes in residents. The study also revealed that group home staff had a one-tracked way of describing the process of ageing among people with ID, seemingly rooted in a medical paradigm of disability. This study suggests that there is a need to raise issues and give guidance related to ageing and ID in disability policy documents in order to support the development of a formal culture that addresses old age and ID in disability services.

Place, publisher, year, edition, pages
Routledge, 2016
Keyword
Intellectual disability; ageing; later life; staff; group home
National Category
Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:liu:diva-113338 (URN)10.3109/13668250.2015.1094038 (DOI)000369497300001 ()
Note

Vid tiden för disputation förelåg publikationen som manuskript

Available from: 2015-01-16 Created: 2015-01-16 Last updated: 2017-04-21Bibliographically approved
3. Staff experiences of participation in everyday life of older people with intellectual disability who live in group homes
Open this publication in new window or tab >>Staff experiences of participation in everyday life of older people with intellectual disability who live in group homes
2015 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 17, no 4, 335-352 p.Article in journal (Refereed) Published
Abstract [en]

This article aims to explore ways in which members of staff in group homes for people with intellectual disability experience participation, and what participation means for older people with intellectual disability. Qualitative interviews were performed with 15 members of staff at group homes in Sweden. The findings of this study are illustrated by considering two interacting themes and six subthemes. These involve staff experiences of the meaning of participation and factors which facilitate or inhibit it. The meaning of participation was expressed as doing and feeling. Staff described that participation for older people with intellectual disability was influenced by the individual characteristics of the residents, such as the relationship between age and disability. They also expressed the view that participation was influenced by organizational and physical contextual factors such as economics, time and space as well as the social environment. The latter included staff knowledge and skills, family and peers.

Place, publisher, year, edition, pages
Taylor & Francis, 2015
National Category
Social Sciences Interdisciplinary Health Sciences Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:liu:diva-113333 (URN)10.1080/15017419.2014.941923 (DOI)
Conference
2015/01/16
Available from: 2015-01-16 Created: 2015-01-16 Last updated: 2017-12-05Bibliographically approved
4. Choice and control for people ageing with intellectual disability in group homes
Open this publication in new window or tab >>Choice and control for people ageing with intellectual disability in group homes
2016 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 23, no 2, 127-137 p.Article in journal (Refereed) Published
Abstract [en]

Background: Many people ageing with intellectual disabilities (ID) age in place in group homes. Participation is a central concept in support and service to people with ID, but age is often a determining factor for participation among this group. Choice and control are dimensions of participation.

Aim: The aim of this article is to explore how choice and control in the everyday life of people ageing with ID is expressed and performed in the group home’s semi-private spaces.

Material and methods: Participant observations and interviews with residents and staff were conducted in four different group homes in Sweden that had older residents.

Results: Four categories were found that can be understood as aspects of choice and control in the group home’s semi-private spaces in the everyday life of people ageing with ID. These categories included aspects such as space and object, time and routines, privacy, and a person-centred approach.

Conclusion and significance: People ageing with ID are vulnerable when it comes to maintaining choice and control in various situations in the home’s semi-private spaces. It is argued that occupational therapists should include this occupational arena in their evaluations and interventions for people ageing with ID.

Place, publisher, year, edition, pages
Taylor & Francis, 2016
Keyword
Autonomy, decision-making, developmental disabilities, empowerment, group accommodation, later life, older adults, participation, occupational justice
National Category
Health Sciences Social Sciences Interdisciplinary Occupational Therapy
Identifiers
urn:nbn:se:liu:diva-113335 (URN)10.3109/11038128.2015.1095235 (DOI)26452592 (PubMedID)
Note

At the time for thesis presentation publication was in status: Manuscript

Available from: 2015-01-16 Created: 2015-01-16 Last updated: 2017-04-24Bibliographically approved

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