“I am Alone and Isolated”: A Qualitative Study of Experiences of Women Living with Genital Fistula in Uganda
Loading...
Date
2015-09-10
Journal Title
Journal ISSN
Volume Title
Publisher
BMC women's health
Abstract
Globally, 2–3 million women are estimated to have a genital fistula, with an annual incidence of
50,000–100,000 women. Affected women remain silent within their communities, and their experiences often go
unnoticed. Our objective was to explore the experiences of Ugandan women living with genital fistulas to
understand how their lives were affected and how they coped with the condition.
We conducted 8 focus group discussions (FGDs) with 56 purposively selected women with a genital
fistula seeking treatment at Mulago Hospital, Uganda. Data were transcribed and analysed using qualitative content
analysis. Women with a fistula were living a physically changed and challenging life, living socially deprived and
isolated, living psychologically stigmatised and depressed, and living marital and sexual lives that were no longer
joyful. The women’s experiences were full of life changes and coping strategies, and they used both problem- and
emotion-focused coping strategies to deal with the challenges. They devised ways to reduce the smell of urine to
reduce the stigma, rejection and isolation. While trying to cope, the women found themselves alone and isolated.
Women either isolated themselves or were isolated by society, including by close relatives and their husbands.
Their sex lives were no longer enjoyable, and generally, women felt a loss of their marital and sexual rights.
Women with a fistula make adjustments in their lives to cope with the physical, social, psychological
and sexual challenges. They use both problem- and emotion-focused coping to minimise their sense of isolation, as
well as the rejection and stigma associated with fistula. These findings are essential for counselling patients, families
and community members affected by a fistula. In similar contexts, health programmes should go beyond fistula
closure and target communities and families to reduce the stigma and isolation faced by women with genital
fistula.
Background
A fistula is an abnormal opening between a woman’
Description
Keywords
Citation
Barageine, J. K., Beyeza-Kashesya, J., Byamugisha, J. K., Tumwesigye, N. M., Almroth, L., & Faxelid, E. (2015). “I am alone and isolated”: a qualitative study of experiences of women living with genital fistula in Uganda. BMC women's health, 15, 1-14.DOI 10.1186/s12905-015-0232-z