Participant Engagement and Ethical Digital Storytelling: The MOCHA Moving Forward Study

Abstract

African-American men continue to bear a disproportionate share of the burden of health disparities, in general, and chronic diseases, in particular. The Men of Color Health Awareness (MOCHA) Moving Forward study seeks to determine the effectiveness of an innovative, community-driven program to improve the health and quality of life of low-income African-American men between the ages of 35 to 70 years by reducing identified social risk factors for chronic disease for these men. The project uses digital storytelling (DST) to encourage African-American men to tell their stories, especially related to stress, gender role stereotypes, and mental and physical health and well-being. Thirty-six men were recruited to participate in one of four DST workshops, which resulted in each participant creating a 2- to 3-minute digital story. In this article, we describe and analyze three salient ethical dilemmas that arose in conducting the Men of Color Health Awareness Moving Forward study DST workshops with African-American men. The dilemmas can be traced to the distinct purposes for which DST can be used, data collection or intervention development, and the trade-offs between protecting and patronizing participants. We discuss potential ways to resolve or circumvent the identified issues.