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.

Development of a complex intervention to improve participation of nursing home residents with joint contractures: a mixed-method study

“…The involvement of residents in the modelling process aimed at identifying participation priorities and barriers to participation and individual problem-solving strategies. However, the feedback from the residents added less information than expected and suggested that frail older people are likely to adapt to their physical disability and thus to their expectations on participation [ 37 ]. To overcome this unwanted phenomenon, strategies are needed enhancing older people’s sense of self-worth and helping them understand the way how their social participation can be facilitated [ 38 ].…”

It is important that they care – older persons’ experiences of telephone advice nursing

“…Ability or disability was considered to be of less importance by older people themselves in health care encounters (Hedman et al . ). What mattered was instead to be seen and acknowledged by healthcare professionals, and to be included in decision‐making, to preserved autonomy and participation (Hedman et al .…”

“…What mattered was instead to be seen and acknowledged by healthcare professionals, and to be included in decision‐making, to preserved autonomy and participation (Hedman et al . ).…”

Patient participation in municipal elderly care from the perspective of nurses and occupational therapists

“…One prerequisite for power shift could be equality and a dialogue initiated by staff where time is allocated to a conversation about how an older person wants to participate in his/her care (Algilani, James & Kihlgren, 2016). To create a relationship with the intention of enhancing the patient's opportunities to participate and reach his/her goals has been emphasized (Holmqvist, Holmefur, & Ivarsson, 2013;Taylor, 2008), where a responsive relationship that creates an emotional closeness between patient and professional becomes important (Hedman et al, 2015;Moser, Houtepen, Spreeuwenberg, & Widdershoven, 2010).…”