Nothing about us without us: Involving youth living with HIV in a virtual advisory board

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. YAB members, YLWH...

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Bibliographic Details
Published in:Journal of adolescent health 2023-12, Vol.73 (6), p.1158-1161
Main Authors: CHIDESTER, Autumn B., JOHNSON, Catherine J., LIN, Hueylie, VIERA CORRAL, Ruby, KOOLS, Susan, INGERSOLL, Karen S., DILLINGHAM, Rebecca A., NIJHAWAN, Ank E., TARANOVA, Anna G., TAYLOR, Barbara S.
Format: Article
Language:English
Subjects:
Adolescent
Communication
community advisory board
community engagement
HIV
HIV Infections
Humans
intervention development
mHealth
Mobile Applications
Privacy
Telemedicine - methods
youth advisory board
youth living with HIV
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Summary: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. YAB members, YLWH in South Texas, engaged in the mobile application 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. 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. 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.
ISSN:1054-139X
1879-1972
1879-1972
DOI:10.1016/j.jadohealth.2023.06.028