Community-based participatory research in palliative care: a social justice imperative

Abstract

We appreciate Jason Mills and colleagues’ Comment in The Lancet Public Health on public health partnerships and community participation.1Mills 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: e791Summary Full Text Full Text PDF Scopus (1) Google Scholar 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.2Suarez-Balcazar Y Meaningful Engagement in research: community residents as co-creators of knowledge.Am J Community Psychol. 2020; 65: 261-271Crossref Scopus (21) Google Scholar 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,3Elk 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: 52-83Crossref PubMed Scopus (17) Google Scholar and have developed a training programme for palliative care clinicians to provide culturally appropriate care.4Elk 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: 260-261Summary Full Text Full Text PDF Google Scholar 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.5WHOAssessing the Development of palliative care worldwide: a set of actionable indicators. World Health Organization, Geneva2021Google Scholar 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. We declare no competing interests. Download .pdf (.07 MB) Help with pdf files Supplementary appendix Access to palliative care: the primacy of public health partnerships and community participationOct 9, 2021, marks World Hospice and Palliative Care Day . The 2021 theme, Leave No One Behind—Equity in Access to Palliative Care, is especially pertinent given the unprecedented effects of COVID-19. In support of this theme, we propose a re-imagining of palliative-care access to promote more equitable outcomes through public-health partnerships that prioritise community development and participation in end-of-life care. Full-Text PDF Open Access