Research Ethics in Behavioral Interventions Among Special Populations: Lessons From the Peer Approaches to Lupus Self-Management Study.

ABSTRACT

BACKGROUND: Research involving a homogenous cohort of participants belonging to a special population must make considerations to recruit and protect the subjects. This study analyses the ethical considerations made in the peer approaches to lupus self-management project which pilot tested a peer mentoring intervention for African American women with systemic lupus erythematosus. METHODS: Considerations made at the outset of the project are described and their justifications and reasoning are given. Through analysis of feedback from a postintervention focus group and mentors' logs, implications on program outcomes and participant satisfaction are discussed. RESULTS: Feedback indicated the importance of recruiting and training capable mentors, consistent contact from study staff to avert adverse events and avert fear or mistrust and careful consideration that must go into the pairing of mentors and mentees. Participant feedback also indicated that sensitive topics must be addressed carefully to prevent distress and dissatisfaction. CONCLUSIONS: Applying the lessons learned from this work as well as the considerations that proved successful may improve the contextualization and ethical conduct of behavioral interventions in special populations resulting in improved tailoring and acceptability toward historically underserved individuals.