Relationships, morality, and emotion: their impact and influence on nursing home staff decision-making when a resident with advanced dementia deteriorates.

Aims of the study The aim of the study was to explore the experiences of nursing home staff when making decisions about a resident with advanced dementia whose health deteriorates. Methodology The study was conducted by adopting Charmaz’s constructivist approach to grounded theory methodology. Methods Primary data was collected from semi-structured, face-to-face interviews with 28 participants consisting of 26 registered and unregistered nursing home staff and two-family carers. Participants were recruited from three English nursing homes across the south and east of England. To enable conceptualisation and theorisation, data were collected, coded, and iteratively analysed by using the constant comparative method which informed theoretical sampling until a point of theoretical saturation was reached. Findings This research resulted in the development of a conceptual framework and substantive theory: “The Moral Impact of Emotional Decision-Making” which identified “moral distress”, “moral resignation” and “moral wellbeing” as the moral impact experienced by nursing home staff when trying to do what they perceived to be the “right thing”. The staff needed a means of informing their own position and referred to - “Their Moral Compass”. Their “Moral Compass” was representative of the staffs inherent perceptions of the right thing to do when a person with advanced dementia deteriorated. However, the staff had to determine what the right thing to do was by “knowing and seeing the person”; “finding out wishes and preferences”; “using prior knowledge and experience” and “preparing for the inevitable” when faced with “tipping points” that indicated a resident was deteriorating. However, being able to achieve what they perceived to be the morally right thing to do was not always possible hence there may be a need to demonstrate “moral courage” which might be evident through “challenge and negotiation” or “rule breaking”. Yet, whatever the outcome through a process of “reflecting and learning” the staff were able to recalibrate their Moral Compass and use their learning when “determining the right thing to do” in future situations. Conclusion The absence of consistent perspectives and approaches to clinical decision-making whilst delivering relationship and person-centred care, resulted in nursing home staff performing significant emotional work particularly when a decision needed to be made in the event of a person with advanced dementia deteriorating. Decision-making became personal and therefore nursing home staff felt an obligation to do what they considered to be the morally right thing for each resident. This thesis demonstrates new knowledge and understanding of the role and impact of morality in decision-making when staff are undertaking emotional work with residents, their families and other health professionals when “doing their best to reach a resolution”. The novel concepts of “moral wellbeing” and “moral resignation” in this context emerged whilst developing the substantive theory based on the experiences of nursing home staff when decisions are made when a person with advanced dementia showing signs of deterioration. This thesis concludes by highlighting the contributions of these findings and recommendations for future research, education, and practice.