"I feel myself incomplete, and I am inferior to people". Experiences of Sudanese Women Living with Obstetric Fistula: A qualitative study in Khartoum, Sudan

Abstract

Background and relevance: OF is among the most devastating maternal morbidities which happens as a result of obstructed labor. Usually the child dies leaving the women suffering from the implication of both OF and child loss. It is estimated that there are 50,000 – 100,000 girls and women who develop OF each year and approximately two million are currently suffering with it. This condition is often associated with low status of women, illiteracy, early marriage, lack of access to emergency obstetric care and low rate of skilled birth attendance. Women living with fistula are suffering from physical, psychosocial and economic challenges due to incontinence. It is estimated that about 5000 new cases of OF occur in Sudan each year. Few studies were published about OF in general and the experiences of Sudanese women living with OF are left unnoticed and undocumented. Aim: The aim of this study was to explore childbirth experiences and how OF has impacted the life of Sudanese women living with it. To have better understanding of how their lives were affected physically, psychosocially, and economically by OF and how these women cope with these challenges. Methods: Using a qualitative study design,19 women living with OF were interviews and 14 women participated in two focus group discussion sessions. The study took place in the fistula ward located in Khartoum hospital and fistula re-integration center in Khartoum - Sudan. The three-delays model, stigma and coping theories guided the data collection, analysis and discussion of these findings. Findings: The 1st delay was the most frequent barrier identified during women’s delivery experiences. OF caused disruptions with their identity, psychological wellbeing, their relationships with others at all levels and worsened financial status. Women used both emotion-focused and problem-focused coping techniques to mitigate the consequences. Conclusion: The study findings suggest the importance of implementation of OF prevention programs and the urgency of repair surgeries to alleviate the women’s suffering. Community sensitization and re-integration of women back to their communities are another important strategies to consider.