Community-Guided Focus Group Analysis to Examine Cancer Disparities

Abstract

Background Accountability for Cancer Care through Undoing Racism and Equity (ACCURE) is a systems-change intervention addressing disparities in treatment initiation and completion and outcomes for early stage Black and White breast and lung cancer patients. Using a community-based participatory research approach, ACCURE is guided by a diverse partnership involving academic researchers, a non-profit community-based organization, its affiliated broader-based community coalition, and providers and staff from two cancer centers. Objectives This paper describes the collaborative process our partnership used to conduct focus groups and to code and analyze the data to inform two components of the ACCURE intervention: 1) a “power analysis” of the cancer care system, and 2) the development of the intervention’s training component, Healthcare Equity Education and Trainings, for cancer center providers and staff. Methods Utilizing active involvement of community and academic partners at every stage in the process, we engaged Black and White breast and lung cancer survivors at two partner cancer centers in eight focus group discussions organized by race and cancer type. Participants were asked to describe “pressure point encounters” or critical incidents during their journey through the cancer system that facilitated or hindered their willingness to continue treatment. Community and academic members collaborated to plan and develop materials, conduct focus groups, and code and analyze data. Conclusions A collaborative qualitative data analysis process strengthened the capacity of our community-medical-academic partnership, enriched our research moving forward, and enhanced the transparency and accountability of our research approach.

Engaged for Change: A Community-Engaged Process for Developing Interventions to Reduce Health Disparities

“…Intervention outcomes and process findings can inform dissemination and adaption of those interventions that are found to be effective and help ensure intervention fidelity. Strong collaborations and diverse perspectives among partnership members are important in evaluation; data collection, analysis, and interpretation; and dissemination of findings (Cashman et al, 2008; Schaal et al, 2016). …”

‘It's like you don't have a roadmap really’: using an antiracism framework to analyze patients’ encounters in the cancer system

“…To address this gap, our community-academic-medical partnership implemented and evaluated Accountability for Cancer Care through Undoing Racism and Equity (ACCURE), a systems-change intervention aimed at reducing race-specific gaps in treatment initiation and completion among early stage Black and White breast and lung cancer patients. Funded by the National Cancer Institute (NCI), ACCURE utilized a community-based participatory research approach (CBPR) (Schaal et al 2016;Oh et al 2016;Israel et al 1998) with guidance and governance provided by the Greensboro Health Disparities Collaborative (GHDC), a 15-year old CBPR partnership of community, academic, and medical organizations. GHDC's mission is 'to establish structures and processes that respond to, and build the capacity of, communities and institutions in defining and resolving issues related to racial and ethnic disparities in health' (Schaal et al 2016;Yonas et al 2006;Yonas, Aronson, Coad, et al 2013;.…”

“…Funded by the National Cancer Institute (NCI), ACCURE utilized a community-based participatory research approach (CBPR) (Schaal et al 2016;Oh et al 2016;Israel et al 1998) with guidance and governance provided by the Greensboro Health Disparities Collaborative (GHDC), a 15-year old CBPR partnership of community, academic, and medical organizations. GHDC's mission is 'to establish structures and processes that respond to, and build the capacity of, communities and institutions in defining and resolving issues related to racial and ethnic disparities in health' (Schaal et al 2016;Yonas et al 2006;Yonas, Aronson, Coad, et al 2013;. GHDC is committed to using an antiracism approach informed by the Undoing Racism (UR) ® framework (The People's Institute for Survival and Beyond 2015).…”

“…This paper reports on the findings from the focus groups we conducted with cancer patients and analyzed with an antiracism lens. In this paper we: (1) describe our approach to applying the Undoing Racism ® framework's analysis of power and authority (Schaal et al 2016) as a tool to understand the experiences of Black and White stage 1-2 breast and lung cancer patients at two cancer centers; (2) discuss our findings on pressure points during care that influenced the quality and completion of their cancer treatment; and (3) highlight race-specific differences that are critical to attend to if we are to improve transparency and accountability for equity in cancer care experiences.…”

Decolonizing the Academy: Lessons From the Graduate Certificate in Participatory Research at The University of North Carolina at Chapel Hill

“…The Certificate seeks to build an intellectual and praxis community that learns and develops from each other. At UNC-CH, we have multiple clusters of nationally recognized participatory researchers and community experts, from performance ethnography in Communication (e.g., Craft, 2015;Pollock, 2005Pollock, , 2010 to action research (e.g., Price, Gittell, & Ferman, 2011) and collaborative archaeology in Anthropology (e.g., Agbe- Davies, 2011;McAnany, 2014), to art making in postconflict zones in Music (e.g., Ndaliko, 2016), to model community partnerships in Health Behavior (e.g., Schaal et al, 2016). We chose to constitute a Certificate that would engage faculty in the praxis of teaching and mentoring graduate students in the challenging work of supporting communities via collaborative research that informs action.…”