Autonomy and Control in Everyday Life in Care of Older People in Nursing Homes

Abstract

Self-control and autonomy are not guaranteed when people age and are in need of help from others, especially in institution-based housing. This occurs despite the fact that it is a generally accepted belief that care should be delivered with the greatest possible degree of independence and autonomy. This article discusses older people's experiences with and the opportunities for autonomy in institution-based housing. Through focus group interviews and observations, the daily lives of residents at two nursing homes in Sweden were studied through a comparative approach using the theoretical framework of organizational culture. Three themes emerged showing how autonomy was not a reality for the residents. The first theme revealed an ambivalent mission, indicating ambiguity as to whether the nursing home was a place to live in or a place in which to be cared for. The second theme was symbolic power, which encompassed the staff's power embedded in the organization. The third theme was the ageist approach to care, which was noted in the way staff considered the residents to be old people who were unable and unwilling to strive for autonomy. The three themes were embedded in the organizational culture and were created and recreated in the interaction between residents and staff. A key question for further research is how to change the culture to strengthen the residents' autonomy.

Need or right: Sexual expression and intimacy in aged care

“…Certainly, the rights discourse fits with the revised 2014 Declaration of Sexual Rights by the World Association for Sexual Health, which states that 'sexuality is grounded in universal human rights', and 'is a central aspect of being human throughout life'. The findings in this study of different discourses shaping staff and community understandings about sexual expression and intimacy are consistent with the nascent body of knowledge about the polemic in aged care between privacy and protection (Bauer, 1999;Cornelison & Doll, 2013;Doyle, 2014;Frankowski & Clark, 2009;Morgan, 2009;Reingold & Burros, 2004;Wikström & Emilsson, 2014).…”

“…For example, a study of two Swedish nursing homes found the sector's ambivalent mission as a place of care and a place of residence compromised residents' autonomy (Wikström & Emilsson, 2014). A study of three assisted living settings in the US found that matters of sexual expression were further confounded by ambiguity about who the rightful client and primary decision-maker is, and at what point a resident's cognitive decline impinges on their capacity to make competent decisions (Frankowski & Clark, 2009).…”

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

“…The power shift is central in the Swedish Patient Act (Patientlag, 2014) and in the literature on patient participation (Sahlsten et al, 2008 (Halskov et al, 2017). There is a risk of dehumanization when professionals think that older persons are too ill to participate (Wikström & Emilsson, 2014) or suffer from cognitive impairment and are not able to make decisions and therefore not involved in their care (Poulos et al, 2017). However, even older persons with dementia might be able to participate since their capacity for decision-making varies from day to day ().…”

“…Nursing is the nurse's specific competence where the care is to be provided in partnership with the patient (Svensk sjuksköterskeförening, 2014). Previous studies have identified several barriers to participation such as staff regarding an older person as lacking in knowledge (Wikström & Emilsson, 2014), staff not listening (Dyrstad, Testad, Aase, & Storm, 2015;Garcia, Harrison, & Goodwin, 2016) lacking empathy, having a paternalistic attitude (Larsson et al, 2011) and deciding on treatment (Aasen et al, 2012).…”

Quality of life of older persons in nursing homes after the implementation of a knowledge‐based palliative care intervention

“…This result is supported by a qualitative study, where a total of 50 staffs were interviewed about autonomy at nursing homes in Sweden. These researchers found that the residents were labelled by the staff as old people who were unable and unwilling to strive for autonomy (Wikström & Emilsson, ). Furthermore, a study regarding QoL in Irish nursing homes showed that the more dependent the resident was on the staff, the less likely they were to have a choice (Murphy, Shea, & Cooney, ).…”