Women’s experiences of fistula-related stigma in Uganda

A conceptual framework to inform stigma-reduction interventions

Bibliographic Data

ID15099184
AuthorsAlison M El Ayadi (0000-0003-2674-4887, University of California, San Francisco, corresponding author), Justus Barageine (0000-0002-2427-8731, Department of Obstetrics and Gynaecology, Makerere University College of Health Sciences, Kampala, Uganda;), Suellen Miller (0000-0002-6949-1982, University of California, San Francisco), Josaphat Byamugisha (0000-0002-3438-9662, Department of Obstetrics and Gynaecology, Makerere University College of Health Sciences, Kampala, Uganda;), Hadija Nalubwama (0000-0003-4824-8841, Department of Obstetrics and Gynaecology, Makerere University College of Health Sciences, Kampala, Uganda;), Susan Obore (Urogynaecology Division, Mulago National Teaching and Referral Hospital, Kampala, Uganda), Abner Korn (University of California, San Francisco), Smrithi Sukumar (0000-0003-0356-4875, University of California, San Francisco), Othman Kakaire (0000-0002-8457-9122, Department of Obstetrics and Gynaecology, Makerere University College of Health Sciences, Kampala, Uganda;), Haruna Mwanje (Urogynaecology Division, Mulago National Teaching and Referral Hospital, Kampala, Uganda), Felicia Lester (0000-0002-2759-7703, University of California, San Francisco), Janet M Turan (0000-0002-7802-6206, University of Alabama at Birmingham)
Year2020
Volume22
Issue3
Pages352-367
Publication date2020-03-03
Peer ReviewedYes
Open AccessNo
TypeARTICLE
VenueCulture Health & Sexuality (JOURNAL)
Journal identifiersISSN: 1369-1058 • E-ISSN: 1464-5351
PublisherInforma UK Limited (PUBLISHER • GB)
DOI10.1080/13691058.2019.1600721
PMID31035913
OpenAlexW2942841612
LanguageEN
Citations received6
References cited38

Fistula-related stigma is common. The absence of a unifying conceptual framework prevents a nuanced understanding of the nature of fistula-related stigma, comparison across contexts and the ability to contrast with other stigmas. It also hinders intervention development. We conducted in-depth interviews or focus groups with 60 women who had undergone fistula surgery 6-24 months prior at Mulago Hospital in Kampala, Uganda in 2014. Transcripts were analysed for experiences and consequences of enacted, anticipated and internalised stigma. Narratives revealed experiences with enacted stigma, including gossip, verbal abuse and social exclusion. Women also anticipated and feared stigma in the future. Internalised stigma reports revealed shame and low self-esteem: self-worth reduction, feeling disgraced and envisioning no future. Consequences included social isolation, changes to normal activities, non-disclosure and poor mental health. Refining stigma theory to specific conditions has resulted in a more nuanced understanding of stigma dimensions, manifestations, mechanisms and consequences, permitting comparison across contexts and populations and the development of stigma-reduction interventions. These lessons should be applied to fistula, acknowledging unique features: concealability, the potential for treatment, lack of community awareness and the social consequences of stillbirth. Reducing fistula-related stigma requires timely surgery and supportive care, stigma-reduction interventions and addressing the complex societal structures that perpetuate fistula

Feeling · Mental health · Psychiatry · Psychological intervention · Shame · Female Genital Mutilation/Cutting Issues · Global Maternal and Child Health · Medicine · Psychology · Social Psychology · Ureteral procedures and complications