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

Autumn B. Chidester, Catherine J. Johnson, Hueylie Lin, Ruby Viera Corral, Susan Kools, Karen S. Ingersoll, Rebecca A. Dillingham, Ank E. Nijhawan, Anna G. Taranova, Barbara S. Taylor

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)1158-1161
Number of pages4
JournalJournal of Adolescent Health
Issue number6
StatePublished - Dec 2023
Externally publishedYes


  • Community advisory board
  • Community engagement
  • HIV
  • Intervention development
  • Youth advisory board
  • Youth living with HIV
  • mHealth

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Psychiatry and Mental health
  • Pediatrics, Perinatology, and Child Health


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