title: "I am alone and isolated": a qualitative study of experiences of women living with genital fistula in Uganda.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Obstetrics and Gynaecology, School of Medicine, Makerere University, College of Health Sciences/Mulago National Referral Hospital, Kampala, Uganda. barageinej@gmail.com.|Department of Public Health Sciences, Global Health (IHCAR), Karolinska Institutet, Stockholm, Sweden. barageinej@gmail.com.
authors.forename: Justus Kafunjo
authors.initials: JK
authors.lastname: Barageine
authors.affiliation: Department of Obstetrics and Gynaecology, School of Medicine, Makerere University, College of Health Sciences/Mulago National Referral Hospital, Kampala, Uganda. jbeyeza@gmail.com.
authors.forename: Jolly
authors.initials: J
authors.lastname: Beyeza-Kashesya
authors.affiliation: Department of Obstetrics and Gynaecology, School of Medicine, Makerere University, College of Health Sciences/Mulago National Referral Hospital, Kampala, Uganda. byamugisha2001@yahoo.com.
authors.forename: Josaphat K
authors.initials: JK
authors.lastname: Byamugisha
authors.affiliation: Department of epidemiology and biostatistics, School of Public Health, Makerere University College of Health Sciences, Kampala, Uganda. naz@musph.ac.ug.
authors.forename: Nazarius Mbona
authors.initials: NM
authors.lastname: Tumwesigye
authors.affiliation: Department of Public Health Sciences, Global Health (IHCAR), Karolinska Institutet, Stockholm, Sweden. l.almroth@telia.com.
authors.forename: Lars
authors.initials: L
authors.lastname: Almroth
authors.affiliation: Department of Public Health Sciences, Global Health (IHCAR), Karolinska Institutet, Stockholm, Sweden. Elisabeth.Faxelid@ki.se.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Faxelid
mesh_terms: D000328:Adult; D001294:Attitude to Health; D005260:Female; D017144:Focus Groups; D006801:Humans; D008132:Loneliness; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D019651:Plastic Surgery Procedures / Q000523:psychology; D012938:Social Perception; D057545:Social Stigma; D018454:Spouses / Q000523:psychology*; D014454:Uganda; D014548:Urinary Fistula / Q000523:psychology* / Q000601:surgery; D016387:Women's Health