Evidence to inform social and behavior change (SBC) interventions for children living with HIV (CLHIV) in South Sudan remains scarce, with most programs relying on global or regional research. To address this evidence gap, the Meeting Targets and Maintaining Epidemic Control (EpiC) project, funded by the U.S. Department of State and PEPFAR, and led by FHI 360, used human-centered design (HCD) methods to contextualize global evidence with local perspectives and insights to better understand poor HIV treatment outcomes (testing, linkage to treatment, adherence) among children aged 0-5. This participatory approach refined what "counts" as evidence by centering community knowledge, challenging traditional hierarchies of expertise.
A key insight was the influence of kinship dynamics on HIV disclosure. Illustrated storyboards served as research probes in one-on-one discussions with family members, and religious and community leaders. This co-design process informed our subsequent model for facilitating community dialogue about HIV disclosure, a challenging task given the pervasive stigma discouraging open discussion. Stakeholders responded to and refined the illustrations and narratives, revealing new insight into how disclosure could be supported within kinship structures to improve access to HIV services.
The resulting visual storybook, incorporating our community insights, depicts a young couple navigating love, children, and an HIV diagnosis impacting mother and children. Delivered by trained facilitators, the story invites community members to engage with and advise the characters, transforming the narrative into a catalyst for realistic community dialogue about HIV disclosure and service access.
Evidence to inform social and behavior change (SBC) interventions for children living with HIV (CLHIV) in South Sudan remains scarce, with most programs relying on global or regional research. To address this evidence gap, the Meeting Targets and Maintaining Epidemic Control (EpiC) project, funded by the U.S. Department of State and PEPFAR, and led by FHI 360, used human-centered design (HCD) methods to contextualize global evidence with local perspectives and insights to better understand poor HIV treatment outcomes (testing, linkage to treatment, adherence) among children aged 0-5. This participatory approach refined what "counts" as evidence by centering community knowledge, challenging traditional hierarchies of expertise.A key insight was the influence of kinship dynamics on HIV disclosure. Illustrated storyboards served as research probes in one-on-one discussions with family members, and religious and community leaders. This co-design process informed our subsequent model for facilitating community dialogue about HIV disclosure, a challenging task given the pervasive stigma discouraging open discussion. Stakeholders responded to and refined the illustrations and narratives, revealing new insight into how disclosure could be supported within kinship structures to improve access to HIV services.The resulting visual storybook, incorporating our community insights, depicts a young couple navigating love, children, and an HIV diagnosis impacting mother and children. Delivered by trained facilitators, the story invites community members to engage with and advise the characters, transforming the narrative into a catalyst for realistic community d ...
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