This formative research builds upon the results of a systematic review for better understanding of the barriers
and enabling factors for fistula repair care and access in Uganda. Understanding how Ugandan women living
with fistula decide to seek care, identify and reach medical centers, and receive adequate and appropriate care
is a necessary step in the implementation research process for designing an evidence-informed intervention.
The study focuses on Fistula Care Plus project-supported treatment facilities where fistula camps are routinely
held. Seventy-three in-depth interviews (IDIs) and eight focus group discussions (FGDs) were conducted in Hoima
and Masaka, in and around Hoima Regional Referral Hospital and Kitovu Mission Hospital, respectively, from
October to December 2015. The data captured a range of perspectives from those with personal or professional
fistula experience, for both individual and group narratives of the experiences of those affected by fistula in
Uganda.
Results reveal the nuances of women’s experiences, along with the additional perspectives of their spouses,
family members, community stakeholders, and fistula camp care providers including nurses-counselors,
surgeons, and facility and district managers. Barriers and enablers to fistula repair care are clustered around
the following factors: psychosocial, cultural, social, financial, transportation, facility shortages, quality of care,
awareness, policy and political environments, and healing and reintegration. The nuances within each of these
categories reveal cross-cutting challenges such as poverty, limited education, gender dynamics, social norms,
and political structures affecting fistula prevention and treatment.
The range of barriers and enablers suggest that it is critical to focus on awareness, transportation, and financial
barriers to care, given their importance to other Fistula Care Plus initiatives beyond their implications for fistula
prevention and treatment access. The findings suggest there are research gaps, including the need for a barrierenabler
index, to be tested, for assessing the relative influence of each factor on access to timely repair care, as
well as incorporating the perspectives of providers working at lower level health facilities. Finally,
recommendations for policy and practice reinforce the need for targeted programming strategies to increase
access for obstetric fistula repair, including promote community-based referrals, increased funding, gradual
progress in institutionalizing repair care opportunities, advocacy for respectful maternity care, as a part of
prevention, and incorporating obstetric fistula information into young people’s health education.