Reducing Rural Palliative Care Gap: Partnering with Community Members with Cancer & Caregivers to Build the Program

Key Message: Despite high rates of cancer incidence and mortality, palliative and supportive services, integral to comprehensive cancer care, are rarely utilized in rural Tennessee. By partnering with community members with cancer and caregivers using Community Based Participatory Research approach, we are jointly creating a program that meets the community’s care preferences.

Abstract: Rural Tennessee experiences disproportionately high rates of cancer incidence and mortality, yet supportive services, integral to comprehensive cancer care, are largely underutilized. Tennessee Oncology (T.O.) provides cancer care to over 90% of patients in Middle Tennessee, and although T.O.’s rural clinics offer palliative and supportive care services, less than 5% of patients who receive oncological treatment in these clinics, access these services. The goal of this project is to build palliative and supportive care programs in three rural regions, that each address the palliative and supportive care needs and care preferences, of patients with cancer and caregivers.

Community Based Participatory Research, is an evidence-based approach, in which the program administrator/researcher partners with members of the community experiencing an unjust problem(1), in determining solutions. This approach has proven to align with community’s cultural values(2), reduce health disparities(3) and improve outcomes(4). Community Advisory Boards (CABs) consisting of residents with cancer, caregivers and community leaders were created in each region, and each partnered with a T.O. facilitator to guide all aspects of the focus groups, an effective method to gain input from the broader community. Results of community feedback will be reported to the respective CABs, who, based on these, will make programmatic recommendations that T.O. will implement.

Lessons learned from this first palliative and supportive care program built in full partnership with the community include: 1. Surprise and enthusiasm of community members at being invited to collaborate in program creation. 2. CAB recommended effective solutions to challenges, e.g., based on their concern that men with prostate cancer would not participate in groups, one-on-one interviews were conducted. 3. CAB members participated in effective recruitment of community members to focus groups or one-on-one interviews. 4. This approach provides a replicable framework for creating palliative care programs that meet the needs of underserved communities.

References: 1. C. Devia, E. A. Baker, S. Sanchez-Youngman, et al. “Advancing System and Policy Changes for Social and Racial Justice: Comparing a Rural and Urban Community-Based Participatory Research Partnership in the US,” International Journal for Equity in Health 16, no. 1(2017): 17-3
2. 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, Vol. 4.1, 2020
3. N. Wallerstein, L L. Giatti, C. Maria Bógus, et al., “Shared Participatory Research Principles and Methodologies: Perspectives from the USA and Brazil — 45 Years after Paulo Freire’s ‘Pedagogy of the Oppressed,’” Societies 7, no. 2 (2017): 6-27;
4. Devia, C. Devia, E. A. Baker, et al., In: N. B. Wallerstein and B. Duran, “Using Community-Based Participatory Research to Address Health Disparities,” Health Promotion Practice 7, no. 3 (2006): 312-323