The loss of dignity: social experience and coping of women with obstetric fistula, in Northwest Ethiopia

BACKGROUND: Obstetric fistula is a debilitating condition resulted from poorly (un) managed prolonged obstructed labor. It has significant psychosocial and economic consequences on those affected and their families. Data regarding experiences and coping mechanisms of Ethiopian women with fistula is scarce. METHODS: Qualitative design was employed with in depth interview technique by using open ended interview guide. Eleven fistula patients waiting for surgical repair at the fistula treatment center of Gondar Specialized Referral Hospital were selected with typical case selection. Thedata were audio-taped, transcribed and translated from Amharic to English. Open code version 4.03was used to organize data and identify themes for analysis. RESULTS: The age of participants of the study ranged between 19 to 43 years. Ten of them were from rural areas. Regarding their educational status eight cannot read and write. Similar number were either separated or divorced. Six of them lived with obstetric fistula without treatment from one to five years. Five women related their condition to their fate. The women faced challenges in role performance, marital and social relationships and economic capability. Frequent bathing, use of stripes of old clothes as a pad, self-isolation and hiding from being observed, wearing extra clothes as cover, increasing water intake and reducing hot drinks and fluids other than water were the ways they have devised to cope with the incontinence. CONCLUSION: The study participants reported that they experienced deep sense of loss, diminished self-worth and multiple social challenges. They coped with the incontinence in various ways among which some were non effective and might have continuing negative impact on woman’s quality of life even after corrective surgery. Developing bridging intervention for early identification and referral could reduce period of women’s suffering. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12905-019-0781-7) contains supplementary material, which is available to authorized users.