Despite well-documented individual-level barriers to fistula care access including limited awareness, psychosocial deterrents, and contextual factors, less is known about how these factors manifest and operate at community level. Social normative community perspectives – their knowledge, attitudes and actions in relation to women living with fistula – can offer insight into this mechanism. Our study describes changes in fistula knowledge and attitudes toward those living with fistula among community members in Nigeria and Uganda following implementation of a multi-component intervention addressing treatment barriers.
This study adopts a pre-post qualitative design with a comparison site and draws on focus group discussions with female and male community members from three sites in Nigeria and Uganda. Transcripts were analyzed for passages presenting community knowledge and attitudes related to fistula and perceptions of women living with fistula. Summary memos were developed and used to compare viewpoints across study sites and time points and between men and women.
Community members demonstrated basic knowledge of symptoms of fistula and mixed understanding of its causes; prolonged obstructed labor and iatrogenic causes were most known. Myths and misconceptions around fistula causes commonly relate to incorrect biomedical understanding, witchcraft, and promiscuity. To varying degrees, fistula cause knowledge increased, and misinformation decreased among endline intervention groups with less observed change in endline comparison groups. Awareness that fistula can be surgically repaired free of charge at fistula centers varied across study regions, with higher awareness among individuals who personally knew someone who experienced repair at a center. Although community members at baseline and endline perceive shame and stigma as affecting women living with fistula, community attitudes toward these women show an increase in empathy at endline in intervention areas.
Community empathy and willingness to help women living with fistula, coupled with reduction in misinformation regarding fistula, its cause and how to access treatment, is an incremental outcome associated with the implementation of a multi-component intervention to address treatment barriers. However, findings reveal that social and behavioral change happens slowly and that further programmatic research on society-targeted approaches emphasizing comprehensive community understanding of fistula and stigma reduction is needed.