Participant engagement and feedback in microbiome projects: a case of AWI-Gen 2

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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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ABSTRACT Returning individualized microbiome results in ways that are ethical, comprehensible, and useful remains under-explored in African settings. We nested a multi-site, mixed-methods study within the AWI-Gen Wave 2 gut microbiome sub-study of 1,801 women aged 42 – 86 years to engage the participants and provide feedback. All (1,001) participants from Agincourt and Soweto (South Africa) and Nairobi (Kenya) were invited to feedback meetings: 496 from Agincourt, 87 from Soweto, and 195 from Nairobi responded. Engagement strategies were tailored by site (small-group and home-based sessions, visual metaphors, Foldscopes, and local-language delivery). Using semi-structured discussions and structured observations analysed thematically in MAXQDA under COREQ, five cross-cutting themes emerged: (1) understanding of microbiome reports, (2) emotional responses to feedback, (3) perceived health relevance, (4) trust in research institutions, and (5) suggestions for improving engagement. Culturally grounded explanations and local-language facilitation enhanced comprehension and perceived relevance; English-heavy sessions were associated with more confusion. Most participants expressed satisfaction and described planned or enacted dietary and lifestyle changes, while frustration centred on long delays between sampling and feedback. Trust increased with transparency and individualized return of results but was often conditional on minimizing burdensome procedures such as repeat blood sampling (phlebotomy) and ensuring timely feedback. Engagement was feasible and low-cost (approximately USD 29-59 per participant) with site-specific resource needs. Limitations included constrained generalizability beyond the three study sites. Returning individualized microbiome findings in community settings in Africa is acceptable, feasible, and can motivate health-promoting behaviours when delivered promptly and in culturally and linguistically appropriate ways. IMPORTANCE Microbiome studies rarely return individualized results in low-resource settings due to concerns about appropriate feedback and associated costs. This gap risks eroding trust and diminishing research impact. In three African communities, tailored feedback on gut microbiome profiles was provided to 778 women. By documenting a costed, multi-site engagement model and the themes influencing acceptance and actionability, this work offers a practical framework for ethically returning complex -omics results at scale in underrepresented populations - advancing scientific equity and strengthening community trust in microbiome research. Competing Interest Statement The authors have declared no competing interest.

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