Understanding the impact of a new public health approach to end-of-life care: a qualitative study of a community led intervention

Abstract Background Social isolation is recognised for its substantial impact on mortality, ranking above many established public health threats. The end of life can compound this problem; with escalating acute care costs due to poor social support and rising numbers of deaths, new solutions are needed. Examples of peers providing social support exist within end-of-life care but have not been well characterised. We aimed to understand the impacts and facilitative processes of a home visiting intervention. Methods A qualitative study with mixed methods of data collection (in-depth interviews, participant observation, documentary analysis) was done. Volunteers and beneficiaries matched for more than three home visits, staff members leading the project, and family carers were included. Data were analysed according to modified grounded theory. Participants were recruited by theoretical sampling, and recruitment was concluded when theoretical saturation was reached. Ethics approval was obtained. Findings Data included 21 in-depth interviews, 19 episodes of participant observation, and 19 documents. Three central impacts emerged from the data. Participants stated that peer-support filled a gap in social support that neither professionals nor family could meet. Participants described becoming socially connected and linked this connection to increased wellbeing. Volunteers viewed themselves and those they visited as peers, despite differences in age or diagnosis. This view explained how compassion could be expressed, instead of a more detached form of empathy. A key facilitative process was the development of a relationship based on mutuality rather than passivity and dependence. On this basis, the relationship could be reconstructed outside the professional domain and could develop a depth and sustainability beyond the formal intervention. Interpretation This study highlights the role of social networks in promoting wellbeing at the end of life. For sustainable changes to occur, relationships must be reciprocal rather than passive. These findings have important implications for how social care interventions are structured at the end of life. Peer support networks are a sustainable and appropriate care model, and this study provides evidence of their utility and sheds light on the fundamental components of compassionate care. Funding None.