At the end of the Rainbow: Rainbow experiences of palliative care through the lens of a situated case study

Abstract

This thesis explores Rainbow experiences of palliative care in Aotearoa New Zealand through the lens of a situated case study and the local policy context for palliative care. Underscoring this thesis is an understanding that the Rainbow community constitute a subgroup of the population which possess specific needs within the palliative care space. A key concept on which this research rests is good death and how palliative care aspires to achieve a good death. This is a novel, exploratory study conducted to address the lack of literature pertaining to Rainbow experiences of palliative care in Aotearoa New Zealand. The theoretical framework for this thesis is grounded in the socio-ecological model of health and the concept of aroha. A case study research design is utilised to give a fine-grained exploration of a single research participant’s experience supporting his partner’s palliative care journey. Semistructured interviews were conducted with the research participant, which provided insights into how palliative care unfolded within the lifeworld of a couple who are members of the Rainbow community. Interview data was analysed with an interpretivist approach. In addition, I conducted analysis of key documents that direct the design and delivery of palliative care in Aotearoa New Zealand. Analysis of the documents was conducted by situating and examining them within the socio-ecological framework. The case study findings include themes of caregiving and the impact of discrimination. Within the theme of caregiving, topics that emerged included transitions in care, dynamic support, and expressions of autonomy. The theme of the impact of discrimination investigated the legacy of the AIDS crisis, the burden of educating people delivering palliative care, and the fear of discrimination. A synthesis of the interview data and document analysis highlights the radical potential of palliative care as a model of care, alongside tensions between aspirations expressed within the palliative care model and lived experience. I also investigate the role of intersectionality in facilitating good death, and the complexities of being openly Rainbow, as key issues within the case study and document analysis. In terms of implications for future research, I argue that fine-grained case study approaches to explore complex, personalised, and deeply contextual experiences such as those included within the study offer novel insights into service delivery. Additionally, this thesis indicates the necessity of further diverse research within the Aotearoa New Zealand context to ensure understandings of Rainbow palliative care experiences are robust.