Disseminating Results to Study Participants: Experiences from the Kisumu Breastfeeding Study (KiBS)

Issues: Dissemination of research findings usually involves scientific publications and presentations at conferences, often overlooking the study participants. The Kisumu Breastfeeding Study is a clinical trial of maternal antiretrovirals for reduction of mother to child HIV transmission among breastfeeding women. The study started in July 2003 and enrolled 522 women. Preliminary findings were reported in January 2008. We report on the experiences of disseminating findings to the participants, most of whom had completed the study.

Description: We summarized key results in a brochure translated into local languages and pretested it to assess readability and comprehension. We invited participants in groups of 20 - 30 to the study site for a presentation of results. Participants read through the brochure, and a discussion was facilitated by peer counselors and study staff.

Lessons learnt: By September 2008 we had conducted 20 sessions involving 361 participants. Participants responded positively to the process and deliberated causes of infant HIV transmission. The exercise also served as an opportunity to obtain feedback on post-study issues, particularly, entry into care, family planning, concerns about ARV drug resistance and side effects of ARVs. Challenges to this process included; participants having relocated, interruption from children, low literacy, and fear of disclosure if found with the brochure.

Recommendations: Returning study results to participants should be prioritized. We demonstrated that such dissemination is feasible and appreciated. Results should be presented in a clear and simple way. Other methods to disseminate results to participants and an evaluation of the process would be useful.