At the mercy of others – for better or worse

Dybvik, Tove Katrin; Gjengedal, Eva; Lykkeslet, Else

doi:10.1111/scs.12078

Cited by 10 publications

(32 citation statements)

References 11 publications

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“…They proved their ability to act when decision‐making in matters of everyday life were based on life memories, having a variety of routines, and being able to do spontaneous or planned activities. Earlier findings show that having something to look forward to influences experiences in the present .…”

Section: Discussionmentioning

confidence: 82%

Life memories and the ability to act: the meaning of autonomy and participation for older people when living with chronic illness

Hedman

Pöder

Mamhidir

et al. 2015

Scandinavian Caring Sciences

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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.

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Section: Discussionmentioning

confidence: 82%

Life memories and the ability to act: the meaning of autonomy and participation for older people when living with chronic illness

Hedman

Pöder

Mamhidir

et al. 2015

Scandinavian Caring Sciences

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“…The residents want both physical and psychosocial care; being able to receive help when needed was important. 29 Unfortunately, lack of resources in terms of too few staff was crucial because there was too little time for social contact. In Norwegian primary healthcare, inadequate attention, the need for social contact, and physical activity or self-determination were ethical challenges experienced most frequently by healthcare workers.…”

Section: Discussionmentioning

confidence: 99%

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

2014

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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.”

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“…(quotation in Walker & Paliadelis, 2016, p. E8) However, in some studies, participants said it was inappropriate for staff and residents to be friends, and that staff should act like professionals (Bangerter et al, 2016). Residents also commented that they felt safe with staff who displayed professionalism and competence, communicated clearly, and were able to promptly recognize and respond to their needs (Bangerter et al, 2016;Dybvik et al, 2014;Palacios-Ceña et al, 2013;Rodríguez-Martín et al, 2013;van Hoof et al, 2016): "[staff should] be knowledgeable about the job . .…”

Section: Staff Attitudementioning

confidence: 99%

“…Poor attitude was associated with staff who avoided taking responsibility for residents' needs (Dybvik et al, 2014;Harrison & Frampton, 2017), treated residents like children (Donnelly & MacEntee, 2016), or lacked enthusiasm for their work (Donnelly & MacEntee, 2016). A resident in one study suggested staff are more likely to neglect residents with dementia or other disabilities that impede self-advocacy (Kang et al, 2020).…”

Section: Staff Attitudementioning

confidence: 99%

Aged Care Residents’ Perspectives on Quality of Care in Care Homes: A Systematic Review of Qualitative Evidence

et al. 2021

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There is increasing interest in harnessing aged care residents’ perspectives to drive quality improvement in aged care homes. We conducted a systematic review of qualitative evidence including literature examining residents’ descriptions of “quality of care” in aged care homes, using database searches and screening records according to eligibility criteria. Three independent reviewers conducted quality assessment of forty-six eligible articles and performed thematic synthesis of articles’ findings. We distinguish nine key themes describing factors influencing quality care: staffing levels, staff attitude, continuity, routine, environment, decision-making and choice, dignity of risk, activities, and culture and spirituality. While many themes were consistent across studies, residents’ prioritization of them varied. Aged care home residents have differing conceptions of quality care as well as heterogeneous and dynamic needs and preferences. Care providers are best able to facilitate quality care when intentional efforts are made to recognize this and tailor delivery of services the individual residents.

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At the mercy of others – for better or worse

Cited by 10 publications

References 11 publications

Life memories and the ability to act: the meaning of autonomy and participation for older people when living with chronic illness

Life memories and the ability to act: the meaning of autonomy and participation for older people when living with chronic illness

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

Aged Care Residents’ Perspectives on Quality of Care in Care Homes: A Systematic Review of Qualitative Evidence

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