We appreciate Jason Mills and colleagues’ Comment in The Lancet Public Health on public health partnerships and community participation.1 The palliative care field could benefit from using community-based participatory research (CBPR) approaches to ensure provision of equitable care and address the social determinants of health amid serious illness, particularly for vulnerable and excluded groups.
CBPR is a social justice tool that engages the community as an equal partner and is crucial to identifying community-specific care needs, values, preferences, and priorities.2 Ensuring that community-based wisdom grounds our collective science could inform practice implications with integrity and pragmatism. Palliative care investigators can leverage CBPR approaches to identify and dismantle structural barriers that sustain inequities. Further, CBPR is key to decolonising cross-cultural palliative care initiatives to drive contextually appropriate palliative care programmes and policies.
Over the past 5 years, we have used CBPR principles to create the first culturally concordant palliative care intervention,3 and have developed a training programme for palliative care clinicians to provide culturally appropriate care.4 We have also conducted training in CBPR for palliative care clinicians and researchers from throughout the USA (appendix).
Although multiple CBPR initiatives are underway, these approaches could be adopted more rapidly to equitably advance palliative care.5 Long-term, community-based partnerships and sustainable infrastructures adaptive to people’s needs during life-limiting illnesses are needed. CBPR can help advance social justice in the face of serious health-related suffering.
Supplementary Material
Footnotes
We declare no competing interests.
Contributor Information
William E Rosa, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Ronit Elk, Division of Geriatrics, Gerontology, and Palliative Care, Department of Medicine, School of Medicine, University of Alabama, Birmingham, AL, USA.
Rodney O Tucker, Division of Geriatrics, Gerontology, and Palliative Care, Department of Medicine, School of Medicine, University of Alabama, Birmingham, AL, USA.
References
- 1.Mills J, Abel J, Kellehear A, Patel M. Access to palliative care: the primacy of public health partnerships and community participation. Lancet Public Health 2021; 6: e791. [DOI] [PubMed] [Google Scholar]
- 2.Suarez-Balcazar Y. Meaningful Engagement in research: community residents as co-creators of knowledge. Am J Community Psychol 2020; 65: 261–71. [DOI] [PubMed] [Google Scholar]
- 3.Elk R, Emanuel L, Hauser J, Bakitas M, Levkoff S. Developing and testing the feasibility of a culturally based tele-palliative care consult based on the cultural values and preferences of southern, rural African American and white community members: a program by and for the community. Health Equity 2020; 4: 52–83. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Elk R, Barnett M, Thompson M, Tate V, Nichols A. African American communities speak to palliative care clinicians: evaluation of an innovative community-developed communication skills training program (GP726). J Pain Symptom Manage 2020; 60: 260–61. [Google Scholar]
- 5.WHO. Assessing the Development of palliative care worldwide: a set of actionable indicators. Geneva: World Health Organization, 2021. [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.