Community-Engaged Research Cancer Survivors as Community Researchers

• Published in: Journal of empirical research on human research ethics Vol. 9; no. 3; pp. 74 - 78
• Main Authors: Mosavel, Maghboeba, Sanders, Kimberly D.
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA Sage Publications, Ltd 01.07.2014; SAGE Publications; Sage Publications Ltd
• Subjects: Adult; Attitude; Black communities; Cancer; Caregivers; Communities; Community; Community structure; Community-Based Participatory Research; Economic research; Female; Health care inequality; Humans; Long-Neglected Issues; Male; Medical ethics; Middle Aged; Morality; Neoplasms; Research ethics; Research Personnel; Research studies; Researchers; Residence Characteristics; Survivor; Survivors; human subjects training; cancer survivors; cancer needs assessment; CBPR; community researchers; frontline workers
• ISSN: 1556-2646; 1556-2654
• DOI: 10.1177/1556264614540598

The personal rewards and challenges experienced by community researchers are not well explored. Training laypersons to be engaged in some or all aspects of community-engaged research is becoming more common, highlighting the need to understand the challenges associated with this role. The complexities of this role are magnified when the layperson has multiple identities of overlap with the research participant. In this brief report, we explore the rewards and challenges reported by 8 cancer survivors and 2 cancer caregivers who conducted interviews with 32 other survivors, caregivers, and health care professionals. We report specifically on data from their exit interviews regarding the experience of being a community researcher conducting research on a subject matter that was very personal. Overall, being a community researcher was a rewarding experience that allowed them to reflect critically on their own personal path and cancer experiences. Importantly, this role provided them with insights into cancer and other disparities in their community beyond their own situation.