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Life memories and the ability to act: the meaning of autonomy and participation for older people when living with chronic illness
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Department of Health and Caring Sciences, Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden. (Vårdvetenskap, Caring Sciences)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. (Vårdvetenskap, Caring Sciences)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Department of Health and Caring Sciences, Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden. (Vårdvetenskap, Caring Sciences)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Department of Health and Caring Sciences, Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden. (Vårdvetenskap, Caring Sciences)
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2015 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 4, p. 824-833Article in journal (Refereed) Published
Abstract [en]

There is a lack of knowledge about how older people living with chronic illness describe the meaning of autonomy and participation, indicating a risk for reduced autonomy and participation in their everyday life. The purpose of this study was to describe the meaning of autonomy and participation among older people living with chronic illness in accordance with their lived experience. The design was descriptive with a phenomenological approach guided by Giorgi's descriptive phenomenological psychological method. Purposive sampling was used, and 16 older people living with chronic illness who lived in an ordinary home participated in individual interviews. The findings showed that the meaning of autonomy and participation among the older people emerged when it was challenged and evoked emotional considerations of the lived experience of having a chronic illness. It involved living a life apart, yet still being someone who is able, trustworthy and given responsibility - still being seen and acknowledged. The meaning of autonomy and participation was derived through life memories and used by the older people in everyday life for adjustment or adaption to the present life and the future. Our conclusion is that autonomy and participation were considered in relation to older people's life memories in the past, in their present situation and also their future wishes. Ability or disability is of less importance than the meaning of everyday life among older people. We suggest using fewer labels for limitations in everyday life when caring for older people and more use of the phrase 'ability to act' in different ways, based on older people's descriptions of the meaning of autonomy and participation.

Place, publisher, year, edition, pages
2015. Vol. 29, no 4, p. 824-833
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:uu:diva-266967DOI: 10.1111/scs.12215ISI: 000368345900024PubMedID: 25856656OAI: oai:DiVA.org:uu-266967DiVA, id: diva2:871476
Available from: 2015-11-15 Created: 2015-11-15 Last updated: 2018-03-28
In thesis
1. Autonomy and Participation in Care For Older People: Descriptions by Older People, Registered Nurses, Case Managers, First Line Managers and Local Authorities Senior Medicine Advisors
Open this publication in new window or tab >>Autonomy and Participation in Care For Older People: Descriptions by Older People, Registered Nurses, Case Managers, First Line Managers and Local Authorities Senior Medicine Advisors
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Overall aim: To describe the essence of autonomy and participation for older people in care, and how to promote this in care for them.

Method: A descriptive design with a phenomenological approach. Sixteen older people (I) and 13 registered nurses (II) participated in individual face-to-face interviews (I and II). Twelve case/care managers and supervisors participated in a focus group interview, they were grouped by profession, case managers, first line managers and local authority senior medicine advisors, four in each group and interviewed once (III and IV). The data analyses were guided by Giorgi’s descriptive phenomenological method (I and II) and the systematic text condensation by Malterud (III and IV).

Findings: The informants were in agreement that maintaining older people’s health and wellbeing promote autonomy and participation, and supportive relationships are relevant (I–IV). Older people focused on everyday life experiences they made by choice and managing on their own, as strengthening self-esteem and self-identity (I). The registered nurses focused on caring for frail older people and their need for acknowledgement in everyday care. They noted that of providing choices as enable older people to have joyful everyday life experiences (II). The managers and supervisors focused on informed consent, and legislation, and offered solutions to securing a meaningful everyday life by caring for older people’s wishes and needs. They also spoke of the risk the severe consequences could result from older people’s decision-making and their health conditions (III). Relatives were respected as a resource and attended to in everyday care for older people but the focus was the older person in their present life situation and their individual rights (IV).

Conclusion: Promoting to autonomy and participation for older people were maintained health and wellbeing, and the possibility to manage on their own terms. Informed consent, shared decision-making, supportive relationships and acknowledgement of relatives in the life-changing situations were ways to promote autonomy and participation. To promote autonomy and participation in care for older people is also to provide for choices that are meaningful to the older person at end of life in a joyful and permissive atmosphere.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2018. p. 68
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1449
Keyword
Autonomy, Participation, Older People, Chronic Illness, Healthcare, RN, CM, FLM, LASMA, Relatives, Municipal Care, Phenomenology
National Category
Medical and Health Sciences
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-347142 (URN)978-91-513-0295-9 (ISBN)
Public defence
2018-05-22, Universitetshuset sal IX, Biskopsgatan 3, Uppsala, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2018-04-27 Created: 2018-03-28 Last updated: 2018-04-27

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Hedman, MariaPöder, UlrikaMamhidir, Anna-GretaNilsson, AnnikaKristofferzon, Marja-Leena

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