Nothing about us without us: Community-based participatory research to improve HIV care for mobile patients in Kenya and Uganda

Background: Population mobility is prevalent and complex in sub-Saharan Africa, and can disrupt HIV care and fuel onward transmission. While differentiated care models show promise for meeting the needs of mobile populations by addressing care cascade gaps, the voices of mobile populations need to be included when designing care delivery models. We assessed the unmet needs of mobile populations and engaged mobile stakeholders in the design and implementation of service delivery to improve care outcomes for mobile people living with HIV (PLHIV). Methods: CBPR was conducted in 12 rural communities in Kenya and Uganda participating in a mobility study within the Sustainable East Africa Research in Community Health (SEARCH) test-and-treat trial (NCT# 01864603) from 2016 to 2019. Annual gender-balanced meetings with between 17 and 33 mobile community stakeholders per meeting were conducted in local languages to gather information on mobility and its influence on HIV-related outcomes. Discussions were audio-recorded, transcribed and translated into English. Findings were shared at subsequent meetings to engage mobile stakeholders in interpretation. At year three, intervention ideas to address mobile populations’ needs were elicited. After refinement, these intervention options were presented to the same communities for prioritization the following year, using a participatory ranking approach. Results: Transit hubs, trading centers, and beach sites were identified as desirable service locations. Communities prioritized mobile health ‘cards’ with electronic medical records and peer-delivered home-based services. Mobile health clinics, longer antiretroviral refills, and 24/7 (after service) were less desirable options. Care challenges included: lack of transfer letters to other clinics; inability to adhere to scheduled appointments, medication regimens, and monitoring of treatment outcomes while mobile amongst others. Conclusions: Iterative discussions with mobile community stakeholders elicited communities’ health priorities and identified challenges to achieving HIV care cascade outcomes. Understanding the mobility patterns and unique needs of mobile populations through responsive community engagement is critical.