Community-Based Participatory Research on Issues Around Palliative and End-of-Life Care: Literature Review

This review describes past studies that adopted the approach of community-based participatory research to identify implications for future research to address palliative and end-of-life care needs in underserved communities. Four major databases were used to search for studies that met the inclusion criteria. A total of 18 articles published between 2000 and 2015 in scientific journals were identified and included in this review. Six themes emerged from the review of the 18 articles including end-of-life decision making/advanced care planning, experiences with serious illnesses, end-of-life views of individuals with disabilities, grief and loss, use of complementary medicine for palliative and end-of-life care, and community-based palliative care. Communities reported in the articles varied, including racial/ethnic minorities, people with disabilities, prison inmates, patients with late-stage AIDS, or volunteers serving seriously ill community members. Community members participated in many stages of the research process, generating research questions based on the community's needs, providing input in developing intervention tools, implementing interventions, collecting data, and providing guidance for future direction. Building on these past efforts, future community-based participatory research studies on palliative and end-of-life care should include further intervention programs tailored to the needs of communities and more efforts to evaluate the effectiveness of the programs.