Participant engagement and feedback in microbiome projects: a case of AWI-Gen 2
This multi-site, mixed-methods study nested within the AWI-Gen Wave 2 gut microbiome sub-study examined participant engagement and feedback processes for individualized microbiome results among 1,801 women aged 42–86 years in three African sites (Agincourt and Soweto in South Africa, and Nairobi in Kenya). Tailored engagement strategies (e.g., small-group or home-based sessions, visual metaphors, Foldscopes, local-language facilitation) were used, and semi-structured discussions plus structured observations were analyzed thematically to identify five cross-cutting themes: understanding of reports, emotional responses, perceived health relevance, trust in institutions, and suggestions for improvement. The paper found that culturally grounded explanations and local-language delivery supported comprehension and perceived relevance, while English-heavy sessions were associated with more confusion; trust increased with transparency and individualized return of results but was conditional on reducing burdensome procedures and providing timely feedback, with dissatisfaction linked to long delays. Limitations included constrained generalizability beyond the three sites. The paper does not explicitly discuss endometriosis or adenomyosis; it was included in the corpus via a keyword match in the upstream search index.
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- last seen: 2026-05-20T01:45:00.602351+00:00