Autonomy conquers all: a thematic analysis of nurses’ professional judgement encountering resistance to care from home-dwelling persons with dementia

BACKGROUND: Adequate care support from home health care nurses is needed to meet the needs of an increasing number of home-dwelling persons with dementia and those who resist care. The decisions nurses make in home health care when encountering resistance from persons with dementia have an extensive impact on the quality of care and access to care. There is little research on what influences nurse’s encounters with resistance to care from home-dwelling persons with dementia. RESEARCH AIM: To get insight into how nurses experience resistance to care from home-dwelling persons with dementia. METHODS: A qualitative research design using a thematic analysis was conducted following the six steps by Braun and Clarke. Data was gathered from three focus group and three individual interviews, and a total of 18 nurses from home health care participated. The interviews took place over a period of 5 months, from December 2020 to April 2021. ETHICAL CONSIDERATIONS: Approved by the Norwegian Centre for Research, reference number 515138 and by the research advisers and home care managers in each section of the municipality. RESULTS: Two main themes were identified: 1) Challenged by complex and inadequate care structures and 2) Adapting care according to circumstances. There were three subthemes within the first main theme: lack of systematic collaboration and understanding, insufficient flexibility to care, and the challenge of privacy. In the second main theme, there were three subthemes: avoid forced treatment and care to protect autonomy, gray-areas of coercive care and reduced care. The two main themes seemed to be interdependent, as challenges and changes in organizational structures influenced how nurses could conduct their care practices. CONCLUSION: Our findings indicate that nurses’ responsibility to decide how to conduct care is downplayed when facing resistance. Further, their professional judgement is influenced by contextual factors and characterized by a strong commitment to avoid forced treatment and care. A continuous challenge is to safeguard shared decision-making at the same time as it is balanced against risks of severe health damage in home-dwelling persons with dementia. A fundamental question to ask is whether autonomy does conquer all, even when severe health damage is at stake.