A Systematic Review of Community-Participatory Research to Improve End-of-Life Care in Racial/Ethnic Minority Communities

Purpose: Community-Based Participatory Research (CBPR) has demonstrated a potential to address the racial/ethnic disparity witnessed in the use of end-of-life care services. This systematic review aims to examine the goals, designs, and findings of current end-of-life care research that adopted the CBPR approach and to identify implications for future CBPR end-of-life care research in minority communities.

Methods: PubMed, CINAHL and Google Scholar were used to search for research studies published from 2000 to December 2013 in peer-reviewed, scientific journals. The key words used for search included: community-based participatory research, community participatory research, participatory research, or action research, combined with end-of-life, hospice, or palliative. Each study in the search result was reviewed by two researchers to extract only the studies that were conducted in racial/ethnic minority communities. The search result were further narrowed down to those that meet the rigor of the CBPR method, including description of community partner’s involvement in identifying research questions, participant recruitment, development of survey or intervention, delivery of intervention, data collection, interpretation of findings and/or disseminations efforts.

Results:  Eighteen studies were identified as meeting the search criteria and included in the final analysis. Thirteen (72%) of the 18 studies were about projects aiming to build the continuum of cancer care in racial/ethnic minority communities. One of the focus areas of these projects were end-of-life care as the final stage of cancer care spectrum. Community health educators or liaisons, often called “cancer navigators”, were trained and delivered knowledge about end-of-life care, such as hospice care, to community members and assisted them with end-of-life care decision making. Among the remaining 5 (28%) studies, 3 of them were about improving end-of-life care communications in minority groups while one was about caregivers’ satisfactions with hospice care.

Implications: In current CBPR research, end-of-life care has often been viewed as part of continuum of cancer care, and therefore, outreach to increase communities’ level of knowledge about end-of-life care has been the focus. Building on the current CBPR efforts, future CBPR research on end-of-life care may consider development and implementation of culturally competent care in end-of-life care settings and evaluation of satisfaction with such care by patients and family caregivers in minority communities.