Pathways of women peer researchers living with HIV in the evaluation of the Gundo-So programme
Résumé
The Gundo-So programme was a community-based programme aimed at supporting women living with HIV (WLHIV) in Mali regarding serostatus disclosure management. Community -based research was carried out to evaluate the short and medium-term effects of the programme. The facilitators of the programme, most of whom are WLHIV, are fundamental stakeholders in the programme. We wanted to understand their experience of participating in a community-based research and how this experience fits into their professional lives.
ANRS-12373/Gundo-So was a randomized trial implemented in 6 community-based clinics in Mali in 2019/2020. Facilitators (n=6) working in the community-based clinics where the participants were met, took part in the interviews. Each facilitator was interviewed twice: once at the time of inclusion in the study, and a second time when the program had ended in the community-based clinics.
A trajectory analysis based on reflective thematic analysis was conducted, in order to understand the psychosocial processes emerging during participation in Gundo-So and its evaluation (Braun & Clarke, 2019; Spencer et al., 2021). The interview guide was organized around two themes: their professional and activist backgrounds, and on the Gundo-So program (its construction, their participation and the implementation).
Through these different cases, two main types of trajectories stand out: those of the facilitators, themselves living with HIV (n=5), and that of the facilitators not infected by HIV (n=1).
The trajectory of the uninfected facilitator is characterized by a precarious professional position that is not motivated by militant convictions. The Gundo-So program enabled her to acquire new skills and knowledge, particularly about the experiences of people living with HIV. The trajectories of the facilitators living with HIV are similar on various points: a sudden discovery of their seropositivity, care by the community-based clinics, which becomes a place of support, and militant commitment through a community association, a place of learning and support, which leads them to obtain a job. Facilitators were critical of the evaluation of Gundo-So, particularly with regard to the inclusion criteria and their role in decision-making in the the study. The programme as such was described positively as a programme that helped both the participants and themselves by providing knowledge, tools and support.
These results highlighted an activist commitment that was built up through several similar stages among the different facilitators. In particular, through their involvement in the community-based clinics, the increase in skills and knowledge through this commitment and the possibility of professionalization that follows were noted. The Gundo-So program has been an experience that allows the facilitators to accompany them, as WLHIV, in their daily lives, and also to equip them as professionals to best accompany the people they follow, around the issue of sharing status. Participating in a community-based research was also an opportunity to acquire new skills, but they did not feel that they were considered in decision-making.
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