Positive Links for Youth: Incorporating youth voice to adapt a mobile health intervention for youth with HIV in the US South (Preprint)

BACKGROUND Youth and emerging adults with HIV (YWH) are less likely to engage in care and achieve viral suppression, compared with other age groups. YWH also have a high degree of self-efficacy and willingness to adopt novel care modalities, including mobile health (mHealth) interventions. Interventions to increase care engagement could aid YWH in overcoming structural and social barriers and leveraging youth assets to improve their health outcomes. OBJECTIVE We used an assets-based framework, Positive Youth Development, and human-centered design principles to adapt an existing mHealth intervention, PositiveLinks (PL) to support care engagement for 18-29-year-olds with HIV. METHODS We conducted a formative evaluation including semi-structured interviews with 14 YWH and focus groups with 26 stakeholders (providers, nurses, case managers, clinic staff). Interviews covered barriers to care, provider communication, and concerns or suggestions about mHealth interventions. The research team compiled responses into families and used thematic analysis. In the second phase, design thinking processes informed adaptation of the existing PositiveLinks platform using data from three YWH’s real time use suggestions. Throughout the formative evaluation and adaptation, a Youth Advisory Board (YAB) provided input. RESULTS YWH and stakeholders identified common elements of an mHealth intervention that would support care engagement including: the convenience of addressing needs through the App, virtual support groups to support interconnection, short videos or live chats with other YWH or providers, appointment and medication reminders, and medical information from a trustworthy source. Stakeholders also mentioned the need for youth empowerment. Concerns included worries about confidentiality, unintentional disclosures of status, urgent content in an unmoderated forum, and the impersonality of virtual platforms. Design suggestions from YWH included suggestions on appearance, new formatting for usability of the virtual support group, and prioritization of local content. Based on the feedback received, iterative changes were made to transform PL into Positive Links for Youth (PL4Y). Final votes on adaptations were made by the YAB. The overall appearance of the platform was changed, including logo, color, and font. The virtual support group was divided into three channels which support hashtags and content searches. The 'Resources' and 'Frequently Asked Questions' sections were condensed and revised to prioritize South Texas-specific content. CONCLUSIONS Our assets-based framework supported YWH and stakeholder input in the transformation an mHealth intervention to meet the needs of 18-29 yos in South Texas. The human-centered design approach allowed YWH to suggest specific changes to the intervention’s design to support usability and acceptability. This adapted version, Positive Links for Youth (PL4Y), is now ready for pilot testing in the final phase of this implementation science project. CLINICALTRIAL n/a