Lived experiences of family caregivers of those with advanced illnesses: A secondary qualitative data analysis.

Abstract

Family caregivers play a crucial role in providing home palliative care for non-cancer patients with advanced illnesses. Given the complexity and heterogeneity of end-of-life caregiving experiences, there is a need to understand factors influencing caregiver outcomes for different profiles of caregivers. It is also crucial to consider the influence of cultural values on caregiving experiences, particularly in Asian settings. To explore the lived experiences of caregivers of non-cancer patients with advanced illnesses in Singapore. A secondary qualitative analysis of transcripts from interviews conducted as part of a realist evaluation of a non-cancer home-based palliative care programme. Framework analysis was carried out using a combined theoretical framework to identify determinants, mediators and outcomes of caregiving. Analysis was stratified according to five caregiver profiles characterised based on the perceived burdens and benefits of caregiving. Twenty interview transcripts of family caregivers of non-cancer patients with advanced illnesses were analysed. Two, eight, three and seven family caregivers were profiled to have 'Intensive', 'Balanced', 'Relationship' and 'Satisfied' caregiving experiences respectively. Across all profiles, caregivers' psychological outcomes were found to be more prominent than physical outcomes. Caregivers with 'Intensive'' and 'Balanced' profiles experienced greater caregiving intensity and poorer psychological well-being, as compared to caregivers with 'Relationship' and 'Satisfied' profiles. Caregiver appraisal and quality of relationship with others were found as key mitigating factors impacting caregiving demands on well-being. Insights gleaned from this study can be used to develop resources for home palliative providers, tailored to the different caregiving profiles.