Background The promotion of community engagement by palliative care services is an important strategy in increasing death literacy in the community. Networks of support around dying person and their carers can reveal existing death literacy or enable its development; this capacity can assist network members to engage with health services to the benefit of the dying person and their careers. However, it has not been clear whether members of these informal networks view palliative care services, and the health system more broadly, as a help or hindrance to the networks’ support of dying people.
Aim To understand the perceptions of members of informal care networks of the role taken by health services in the support of dying people at home.
Method In interviews with carers (N = 23) and focus groups with caring networks (N = 13), participants were asked to describe the nature of their engagement with palliative care, other health care services and the health system.
Results The analysis revealed care by individual practitioners was viewed as “above and beyond” expectations, it was clear that individualised and compassionate care was not always achieved. Further, the rules and regulations required by many services, and health system at large, were viewed as impediments to appropriate support of those dying at home.
Conclusion More appropriate care of dying people receiving care at home requires formal services to evaluate their attitudes and conduct towards informal networks. Agenda for incremental health system reform can be identified to remove obstacles to engagement between services and community networks.
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