This manuscript will describe a participatory dissemination approach used to translate research findings into actionable strategies for supporting adolescents with Sickle Cell Disease (SCD) and their families in Kenya. Rather than positioning dissemination as the final step in the research process, we used it to launch the first phase of a Human-Centered Design (HCD) process aimed at co-developing locally grounded psychosocial interventions. SCD is a chronic genetic blood disorder that affects hemoglobin, leading to painful episodes, anemia, and organ complications. Each year, an estimated 515,000 newborns are affected, with 70% born in sub-Saharan Africa. SCD contributes significantly to childhood morbidity and mortality and places a substantial emotional and caregiving burden on families, yet psychosocial interventions remain scarce. While psychosocial interventions have been developed in high-income countries, few have been adapted or implemented in low-resource settings where the burden is greatest. To address this gap, we conducted 15 focus group discussions (FGDs) in three urban and rural clinics in Western Kenya. FGDs included adolescents with SCD, their caregivers, and healthcare providers. A team of Kenyan and US-based researchers used thematic content analysis to identify core themes from the data. Following analysis, we held a participatory dissemination workshop in each study site, engaging 48 participants: adolescents with SCD, caregivers, healthcare providers, teachers, faith leaders, and policymakers. Workshops were co-facilitated by Kenyan and US-based team members who presented the main FGD findings. Core themes included emotional distress and coping, family support systems, barriers to healthcare access, and stigma and identity. This launched the first HCD “Inspiration Phase,” which aims to build empathy and uncover insights into lived experiences as a foundation for design. Participants then engaged in structured reflection using brainstorming on color-coded sticky notes and paired discussions to highlight findings they found surprising, emotionally significant, and critical for interventions. A Challenge and Support Mapping activity extended the problem frame by highlighting community-identified priorities beyond the researcher-derived themes. We used affinity mapping to identify patterns and a concluding harvesting discussion to distill key insights for the next HCD “Ideation” phase where participants co-designed psychosocial support strategies at the individual, family, clinic, and community levels. This approach allowed community-based participants to engage directly with research findings—a step they are often left out of—and ensured that their interpretations shaped the next stages of the design process.
Ochieng et al. (Mon,) studied this question.