Nothing About Us Without Us: Involving Youth Living With HIV in a Virtual Advisory Board

Abstract

Purpose: We adapted a traditional community advisory board to the needs of youth living with HIV (YLWH), resulting in a virtual, asynchronous, and anonymous youth advisory board (YAB). The YAB's evolution fostered participation during the adaptation of an HIV care mobile health application.

Methods: YAB members, comprised of YLWH in South Texas, engaged in the mobile application's formative evaluation, adaptation, and pilot implementation. We collected feedback via surveys and interviews, analyzed and integrated responses, tracked participation and YAB adaptations, and performed content analysis.

Results: Driven by feedback, the YAB evolved from in-person group meetings to the current iteration. We administered five surveys, and YAB members provided feedback on communication preferences; mobile app elements; privacy and confidentiality; and virtual support groups.

Discussion: Our adaptive process highlights three primary drivers of innovation: COVID-19 risk reduction, asynchrony, anonymity. Our success in maintaining YAB engagement suggests the adapted model could be employed to support youth input in other contexts.

Keywords: Community advisory board; Community engagement; HIV; Intervention development; Youth advisory board; Youth living with HIV; mHealth.