End-of-life care for elderly within aged residential care facilities : views and perceptions from their next-of-kin : a thesis presented in partial fulfilment of the requirements for the degree of Master of Science with an Endorsement in Health Psychology at Massey University, Manawatu Campus, New Zealand

Abstract

By 2051, the number of people aged 65 and over will account for 1.33 million of New Zealand’s population (Statistics New Zealand, 2006). This has created attention as to what current practices and facilities are available to this cohort of New Zealand’s population, and what more we can do to make sure we provide adequate services. Limited literature provides insight into what takes place within aged-residential care (ARC) facilities during end-of-life (EoL), especially within New Zealand, even though approximately 40% of those aged 85 and above in New Zealand do already die in ARC facilities (Gibb, 2014). This project investigates the experiences and perceptions of EoL care for elderly within ARC facilities, from the perspective of their next-of-kin (NoK)/family member. Eleven NoK/family members who experienced the passing of their elderly relative within an ARC facility, were recruited as participants. The study used a qualitative method with semi-structured interviews. The interviews were then transcribed, and analysed using thematic analysis on Dedoose, a web-based application, to draw themes from the data. Questions were kept broad and open, so that participants would be able to relay their story as openly as possible without interruptions. The findings are presented under ten major themes which includes; the occurrence of a ‘crisis’ for their elderly relative, the responsibility and adjustment to the role of NoK, changes in the elderly relative’s personality, the effort and kindness experienced within the ARC facility, reflection of the conversations participants had with their elderly relative, the multi-dimensional effect of pain, the process of letting go and anticipatory grief, expectations of the ‘good death’, the influence family has on the experience of being the responsible NoK/family member, and the participants experience of grief while managing the funeral. The interpretation of the results highlighted the extended period that is considered to be EoL and its care within an ARC facility, as opposed to only the last few days before death. This research enables an insight of what entails EoL care within the environment of the ARC facility, as well as allowing the NoK/family member to share the story of their experience.