Fistula awareness among sisters of women with fistula

Abstract Objective To determine whether sisters of women with obstetric fistula (OF) were aware of their sisters’ condition, in order to inform the development of survey questions that adapt the sister-based method to fistula rate estimation. Methods Twelve women with OF and 20 of their sisters were interviewed using semi-structured questionnaires in rural Uganda in 2007. Topics included fistula awareness and perceptions of causality. Results Eleven women had vesicovaginal fistula and 1 had rectovaginal fistula. Three were primiparous at time of fistula occurrence; 6 had a parity of 6 or more. Nineteen sisters were aware their sister had OF; 12 became aware at the time of occurrence. The majority of participants (fistula patients and their sisters) associated OF with mistakes made by hospital personnel or problems during procedures. Conclusion Sisters were generally aware of OF within their family. Larger studies are needed to assess the validity and reliability of the sister-based method in capturing fistula through household surveys. In the present study, there was a widespread perception among fistula patients and their sisters that fistula is caused by medical procedures. More research is needed to understand this perception, and program development efforts are required to improve patient perceptions of hospital care.