Cancer Research by Cancers Survivors: A needs assessment by African American low-income cancer survivors and their caregivers to reduce health disparities

This presentation will describe the development of a community-based participatory needs assessment of low income cancer survivors and their caregivers, known as the Community Researchers (CRs) in a Midwestern inner-city setting.

The study prepared 22 cancer survivors and caregivers provided with a basic research foundation, so that CRs are equipped with basic understanding of the regulatory procedures when conducting research. The trainings included research methods, NIH Human Subject Certification (CREC certification), communication, interview techniques etiquette, and self presentation over six extensive training sessions. In addition, CRs were heavily involved in each phase of the process. Cancer survivors and caregivers conducted over 30 in-depth, semi-structured interviews with other cancer survivors and caregivers. Assessment findings demonstrate the utility of using a peer-interview model when conducting research in vulnerable communities.

Several themes emerged in the interviews, surveys, and follow-up evaluations including: (1) need for health education and faith-based health education; (2) the need for development of a community based comprehensive cancer center; (3) the call for successful dissemination of findings to community residents, health professionals, and researchers through presentations at community events and forums, printed media, and local broadcast media; and (4) sustainability, through grants, consultation, and community capacity building activities.

In this presentation we discuss innovative approaches to engage African Americans in community health research. For some, conducting interviews presented the first opportunity to interact with other cancer survivors. For others the interview sessions marked closure and a chance to use their own experience to help newly diagnosed patients in the future. Moreover, the support shared and the expressed comradeship between the CRs was an unanticipated outcome of this project. Most CRs expressed that the interview training sessions helped them heal from their own cancer experiences for a variety of reasons. Furthermore we explore the lessons that we learned using a peer-interview model and developing the tailored CR training tool or curriculum to give voice, build capacity, and engage cancer survivors in addressing health disparities.