Community Data Collection with Children of Mothers Living with HIV: Boundaries of the Researcher Role.

Abstract

The TRACK-II program is a multi-site, community-based randomized controlled trial evaluating an intervention to assist mothers living with HIV (MLH) in disclosing their HIV status to their young children. Many participants-both mothers and children-reported significant depression and/or suicidal ideation, a phenomenon that presented ethical challenges. This article focuses on participants at one site (Atlanta). Through the vignette of "Jordan," we describe ethical challenges that may arise when faced with the responsibility of maximizing participants' safety while maintaining the boundaries of the researcher role. Guided by community psychology values, our team has taken measures within our role as researchers to empower and protect children and mothers endorsing suicidal ideation. For example, we have relied on relationships with community-based organizations and AIDS service organizations to connect HIV-affected families to mental health services. Furthermore, we have expanded our system of documentation to follow-up adequately with families at risk, and we track family resources to promote a strengths-based framework. We have solicited families' feedback about their supports and needs to understand how we may best serve them by connecting them to the resources they report needing most and empowering them to care for themselves.