title: Life memories and the ability to act: the meaning of autonomy and participation for older people when living with chronic illness.
abstract: 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.
authors: Department of Public Health and Caring Sciences, Faculty of Medicine, Uppsala University, Uppsala, Sweden.|Department of Health and Caring Sciences, Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden.
authors: Maria
authors: M
authors: Hedman
authors: Department of Public Health and Caring Sciences, Faculty of Medicine, Uppsala University, Uppsala, Sweden.
authors: Ulrika
authors: http://orcid.org/0000-0002-2867-0490
authors: U
authors: Pöder
authors: Department of Public Health and Caring Sciences, Faculty of Medicine, Uppsala University, Uppsala, Sweden.|Department of Health and Caring Sciences, Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden.
authors: Anna-Greta
authors: AG
authors: Mamhidir
authors: Department of Public Health and Caring Sciences, Faculty of Medicine, Uppsala University, Uppsala, Sweden.|Department of Health and Caring Sciences, Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden.
authors: Annika
authors: A
authors: Nilsson
authors: Department of Public Health and Caring Sciences, Faculty of Medicine, Uppsala University, Uppsala, Sweden.|Department of Health and Caring Sciences, Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden.
authors: Marja-Leena
authors: ML
authors: Kristofferzon
authors: Department of Public Health and Caring Sciences, Faculty of Medicine, Uppsala University, Uppsala, Sweden.|Department of Health and Caring Sciences, Faculty of Health and Occupational Studies, University of Gävle, Gävle, Sweden.
authors: Elisabeth
authors: E
authors: Häggström
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000223:Adaptation, Psychological; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D002908:Chronic Disease / Q000523:psychology*; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D061212:Memory, Episodic; D010358:Patient Participation / Q000523:psychology*; D026684:Personal Autonomy; D012648:Self Care / Q000523:psychology*; D013548:Sweden
keywords: ability to act; autonomy; chronic illness; decision-making; disability; independence; life memories; older people; participation; phenomenology