Step away from the desk: Community-led Co-design of death literacy research with underserved and seldom-heard communities

Background Access to palliative care in Australia remains uneven, with communities experiencing socioeconomic disadvantage facing persistent barriers to timely, appropriate, and continuous care. Death literacy offers a public health palliative care approach for addressing these inequities; however, underserved and seldom-heard communities are frequently excluded from research and intervention design. Structural inequities, limited engagement with mainstream services, and institutional mistrust contribute to this exclusion, highlighting the need for research approaches grounded in trust, reciprocity, and community leadership rather than institution-centered models. Objectives To examine how community-led death literacy initiatives were co-designed, implemented, and sustained through trust-based engagement with communities experiencing socioeconomic disadvantage, and to challenge deficit framings of “hard-to-reach” populations by illustrating how community-led partnerships can support more equitable public health palliative care research. Design/Methods A qualitative, community-based participatory study was conducted within the Palliative Care Research Collaboration’s Death Literacy Index (DLI) project. Four metropolitan Adelaide community groups serving communities experiencing socioeconomic disadvantage (classified as LSES) were engaged through sustained relationship-building, train-the-trainer workshops with community leaders, and co-designed death literacy initiatives delivered in partnership with Palliative Care South Australia. Qualitative data were generated through reflexive practice, interviews, informal conversations, and project artefacts. Pre - and post intervention DLI surveys formed part of the broader mixed-methods project; quantitative outcomes are reported separately. Results Communities co-developed diverse, locally relevant death literacy initiatives aligned with their priorities, capacities, and preferred learning formats. Three groups embedded activities as ongoing practice beyond the formal intervention period. Trust-based partnerships also enabled participation in a parallel longitudinal study of palliative care experiences, illustrating how relational engagement can expand health equity through research participation. Conclusion Community-led, trust-based engagement reframes underserved and seldom heard communities as active partners in shaping palliative care research and practice. Trust functioned as an enabling infrastructure for participation, co-design, and sustained engagement. Through co-design and integrated knowledge translation, death literacy is enacted as a sustained social practice that strengthens inclusion, relevance, and health equity in palliative care research and practice.