'What matters to you?'-a qualitative study on the views of nursing home residents with dementia regarding the health care they receive

Abstract

Aims and objective: This study's aim is to examine what matters to nursing home residents with dementia by exploring their perceptions of nursing home health care through the conceptual lens of person-centred care.

Background: Dementia is a major contributor to nursing home placement. To understand the meaning of living with dementia, the inclusion of persons with dementia in research studies is essential.

Methods: In total, 35 in-depth qualitative interviews were conducted with people who have dementia and live in nursing homes. A thematic analysis was applied to analyse the data. Checklist for qualitative studies: Consolidated Criteria for Reporting Qualitative Research (COREQ) https://www.equator-network.org/reporting-guidelines/coreq/ RESULTS: The analysis revealed one overarching theme with four sub-themes. Different matchings of person-centred care and routines in health care being the overarching theme. The four sub-themes were as follows: (a) understanding of the interplay between disabilities and ageing; (b) participating based on one's own preferences and needs; (c) incongruence between the person with dementia's preferences and needs and health-care support; and (d) working conditions: the relationship between residents and health-care providers. Despite the substantive focus of researchers on person-centred care and the positive impact on the nursing home health care of those who receive it, the results showed that nursing home residents still want more person-centred care.

Conclusions: The results indicate that the incongruence between general routines and individual preferences and needs, as well as the demand to operationalise the person-centred dimensions of health-care behaviour in nursing homes, must be resolved. Health care in nursing homes must focus on enabling residents to participate in daily activities and sustain their personhood and sense of self.

Relevance to clinical practice: Based on the residents' statements, the results contribute to the fields of dementia education, health-care provision and policy-making and may be used to achieve person-centredness and governance.

Keywords: delivery of health care; dementia; hermeneutics; nursing homes.