Nothing to complain about? Residents’ and relatives’ views on a “good life” and ethical challenges in nursing homes

Abstract

Background:Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking.Objective:To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes.Research design:A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description.Participants and research context:A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes.Ethical considerations:This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway.Findings and discussion:The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care.Conclusion:Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.”

Living in a nursing home: a phenomenological study exploring residents’ loneliness and other feelings

“…Our results seem to acknowledge that self‐determination or autonomy is connected to leading a good life from the residents’ perspective, a conclusion which was also made in a recent study by Bollig, Gjengedal and Rosland . Consistent with the findings of a qualitative study identifying autonomy or self‐determination and meaningful (individualised) activities as two out of ten central dimensions of residents’ quality of life, participants in our study also expressed their need for individualised, personal care and meaningful relationships .…”

Associations between person‐centred climate and perceived quality of care in nursing homes: A cross‐sectional study of relatives’ experiences

“…More recently, Jakobsen, Sellevold, Egede‐Nissen, and Sørlie () have also visualized the importance of a positive care climate for the quality of care from the perspective of relatives, with emphasis on both physical and psychosocial aspects of the environment. In another study, both nursing home residents and their relatives described the nursing home as a physical place the resident can call home and as a psychosocial space where both residents and relatives can be acknowledged as dignified human beings (Bollig et al, ). Moreover, as relatives tend to take on the responsibility for monitoring the quality of care and for conveying the residents’ special needs for assistance (Graneheim, Johansson, & Lindgren, ), a greater involvement of relatives in nursing home care could lead to, not only more satisfied residents and relatives, but also less stressed and more satisfied nursing home staff (Rognstad, Sagbakken, & Nåden, ).…”

Psychometric testing of a person-centred care scale the Eden Warmth Survey in a long-term care home in New Zealand

“…For instance, while the residents in general felt comfortable and trusting with staff, their sense of being listened to was rated the third lowest. The relationship to staff has been documented as of utmost importance and could either reinforce acceptance or distance residents from care home life (Bollig, Gjengedal & Rosland, 2014). Residents of long-term care facilities are highly vulnerable and their sense of worth can be challenged by illness and care needs (Pleschberger, 2007).…”

“…The development of trusting relationships between staff and residents appears to be closely aligned to the principle that being listened to and known would result in positive outcomes for the residents. Bollig et al (2014) strongly state that having contact and receiving empathic communication should be a human right for care residents, that is additional to the need of being dry, clean and fed. Where staff provided emotional or psychosocial care, residents reported this affirmed respect and feeling worthiness (Bergland & Kirkevold, 2006;Cooney, Murphy & O'Shea, 2009;Coughlan & Ward, 2007).…”