“Sickness of shame”: Investigating challenges and resilience among women living with obstetric fistula in Kenya

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Silent suffering from unrepaired fistula—a condition that causes women to leak urine or feces—burdens women living in low- and middle-income countries. In Kenya, while many women experience delays in seeking repair due to a number of factors, others demonstrate resilience in accessing care. This mixed methods concurrent design draws on structured questionnaires and case studies with women affected by fistula (n = 82) and 16 focus group discussions (FGDs) with men and women in Central, Eastern, and Coastal Kenya. Factors associated with repair care-seeking include telling a spouse, positive spousal reaction, and financial and psychosocial assistance of spouse or siblings (p < 0.05). Loss of dignity and self-worth, feeling rejected, household gender imbalance, beliefs about witchcraft, spousal or familial abandonment, silence around condition, embarrassment to seek care, poverty, cost of transport, husband accompaniment policies, and past unsuccessful repairs represent barriers to care-seeking. In contrast, women who were knowledgeable about treatment, had financial and psychosocial support from spouses and family members, and felt sympathetic altruism of their community were better able to access repair care, adequate follow-up, and reintegrate into social life. In summary, findings show that multiple factors in women’s lives—including their awareness, resolve, and contextually derived support—simultaneously affect their resilience to access free care opportunities. These opportunities may be further modified by health facility and health system factors, and political leadership that shapes the provision and organization of repair services. This implies a need to focus interventions on educating and awareness-raising to destigmatize the condition, empower women, and enhance collective agency.