Community participation and consultation in palliative and end-of-life care: Building death literacy through a participatory theory of change.

Abstract

Introduction: Death literacy refers to the knowledge, skills, confidence, and social capacity that enable individuals and communities to understand and respond to dying, death, and loss, including palliative and end-of-life care. In low- and middle-income countries such as Ghana, access to palliative care remains limited due to under-resourced health systems, poverty, and socio-cultural norms that discourage open discussions about death. Despite growing global interest in death literacy and public health palliative care, there is limited evidence on how these are developed through culturally embedded, community-led approaches in non-Western contexts.

Objectives: To explore how the COMPASS-Ghana participatory intervention shaped community stakeholders' understanding of death, dying, and palliative care, and how stakeholder engagement contributed to culturally relevant and sustainable service development.

Design: Qualitative participatory study informed by a Theory of Change framework.

Methods: Data were generated through three interlinked participatory intervention activities: a stakeholder engagement session involving 37 participants from healthcare, policy, faith-based, philanthropic, and community leadership backgrounds; a Theory of Change workshop with 25 participants; and focus group with 12 nursing and midwifery students. Data from facilitated discussions and participatory mapping were analysed using reflexive thematic analysis.

Findings: Three interrelated themes were generated: (1) building shared language and awareness around death, (2) embedding palliative care within existing community structures, and (3) enhancing collective agency for sustainable care. The intervention supported a shift from viewing death as taboo to recognising it as a shared community concern, increased confidence in discussing end-of-life issues, and highlighted locally grounded strategies to address financial, caregiving, and service access barriers.

Conclusion: Death literacy in Ghana emerges as a relational and collective process shaped through dialogue, trusted networks, and community action. Embedding palliative care within community and primary care structures aligns with public health approaches and supports Universal Health Coverage, responding to the World Health Assembly Resolution (WHA67.19).