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Background: Women living with obstetric fistula often live in poverty and in remote areas far from hospitals offering surgical repair. These women and their families face a range of costs while accessing fistula repair, some of which include: management of their condition, lost productivity and time, and transport to facilities. This study explores, through women’s, communities’, and providers’ perspectives, the financial, transport, and opportunity cost barriers and enabling factors for seeking repair services. Methods: A qualitative approach was applied in Kano and Ebonyi in Nigeria and Hoima and Masaka in Uganda. Between June and December 2015, the study team conducted in-depth interviews (IDIs) with women affected by fistula (n = 52) – including those awaiting repair, living with fistula, and after repair, and their spouses and other family members (n = 17), along with health service providers involved in fistula repair and counseling (n = 38). Focus group discussions (FGDs) with male and female community stakeholders (n = 8) and post-repair clients (n = 6) were also conducted. Results: Women’s experiences indicate the obstetric fistula results in a combined set of costs associated with delivery, repair, transportation, lost income, and companion expenses that are often limiting. Medical and non-medical ancillary costs such as food, medications, and water are not borne evenly among all fistula care centers or camps due to funding shortages. In Uganda, experienced transport costs indicate that women spend Ugandan Shilling (UGX) 10,000 to 90,000 (US$3.00-US$25.00) for two people for a single trip to a camp (client and her caregiver), while Nigerian women (Kano) spent Naira 250 to 2000 (US$0.80-US$6.41) for transportation. Factors that influence women’s and families’ ability to cover costs of fistula care access include education and vocational skills, community savings mechanisms, available resources in repair centers, client counseling, and subsidized care and transportation. Conclusions: The concentration of women in poverty and the perceived and actual out of pocket costs associated with fistula repair speak to an inability to prioritize accessing fistula treatment over household expenditures. Findings recommend innovative approaches to financial assistance, transport, information of the available repair centers, rehabilitation, and reintegration in overcoming cost barriers.
Nigeria and Uganda were selected as priority countries for formative research, and this study was conducted in catchment areas of and at two specialized national fistula centers, in northern and southern Nigeria (Katsina and Ebonyi), and at camp sites at regional referral and faith-based hospitals in eastern and western Uganda (Hoima and Masaka) supported by the FC+ project. Geographically and linguistically distinct sites were purposively selected to capture sub-national diversity. Population Council selected these sites in consultation with Nigerian and Ugandan USAID missions, ministries of Health, the FC+ project, and Ugandan FC+ partner TERREWODE. Sites were further selected by their ability to capture diverse experiences, by women and care providers, of fistula care access, quality, treatment, and re-integration. Nigeria’s national fistula centers span the country’s six geopolitical zones, with one center expected to serve five or six states. Our study was conducted in two of these six centers. Although fistula centers operate with support from the Federal Ministry of Health, in collaboration with development partners, they differ by scope of care provision. In Katsina, repaired women are admitted to a reintegration program housing and training post-repair clients in a trade of their choice for up to 6 months, while in other hospitals repaired women return home after 2 weeks, without prolonged rehabilitation. Although fistula repair at designated centers is free, ancillary costs such as caregiver expenses and transportation costs to distant repair centers burden poor clients. Similarly, private hospitals that provide fistula repair services, at high (out of pocket) costs to patients, impede access, in addition to poor referral services to fistula centers from primary and secondary health facilities—often clients’ first health system contacts. In general, basic maternal and reproductive healthcare in Nigeria’s public sector is free of charge as policy, although this does not always translate to practice [25, 26]. In Uganda, like Nigeria, fistula repair services are free and rely heavily upon donor funding, resulting in the dominant camp-based service model, although there are increasing policy shifts towards offering routine repairs at referral hospitals. Ugandan fistula repair sites provide various re-integration services for post-repair women. Village health teams, primary health facilities (level 2, 3, 4), and district and referral hospitals constitute Uganda’s tiered health system. Private care providers are common sources of care, both nationally and locally: 78% of non-public healthcare facilities are faith-based, for example the Uganda Catholic Medical Bureau, Uganda Protestant Medical Bureau, and Uganda Muslim Medical Bureau [27]. In general, 65% of Uganda’s healthcare services are paid out-of-pocket, with as many as 20% of Ugandans incurring catastrophic health expenditures, which can contribute to delayed fistula [27]. Given this study’s formative and exploratory nature, a qualitative approach was best suited to understanding local perspectives of fistula repair barriers and enablers in both Nigeria and Uganda. The sample size was guided on theoretical saturation, with thematic areas fully explained by respondents. The study coordinator (from Population Council) maintained daily contact with field supervisors, who monitored data collection quality and progress, including debriefing sessions where interviewers discussed themes emerging from the data. These sessions and concurrent data management allowed the authors to assess saturation of fistula care barriers and enablers. The study team conducted in-depth interviews (IDIs) with women who experienced fistula, and their family members and service providers (n = 107), and facilitated focus group discussions (FGDs, n = 14), with eight to ten male and female community stakeholders and post-repair clients (Table 1). Description of qualitative data collection Participants were purposively selected based on their experience (themselves or a family member) of living with fistula in Nigeria or Uganda, or from a professional role in providing fistula repair or counseling. The study team recruited women 18 years old and older who were living with fistula, at the fistula centers (Nigeria) or camps (Uganda) awaiting repair, or during the post-repair recovery period (5 to 14 days following surgery) (Table (Table1).1). Women answered open-ended questions about their experiences before, during, and after their repair. Ugandan women and their family members stay at a repair camp prior to surgery, and this model helped the team interview more people from Uganda, to better understand their perspectives. At the Ugandan sites 17 family members who accompanied women for repair were interviewed; although primarily spouses, they included aunts, parents, and siblings. These perspectives allow both corroboration of women’s narratives as well as understanding of the experience of those escorting a fistula patient to a treatment center. The study team interviewed 38 fistula care providers in Nigeria (n = 11) and Uganda (n = 27)—nurses, midwives, counselors, surgeons, matrons, facility managers, and one policymaker—to better understand the health system contexts of these surgeries as well as the barriers and enablers described by women and their families. Community stakeholders including religious leaders, village or district heads, women’s groups, and traditional birth attendants were recruited for separate male and female FGDs (8 to 10 persons per group). Data were collected in Nigeria and Uganda from June through December 2015. Experienced research assistants were hired and trained, and practiced interviewing and note-taking prior to data collection. Interviewers conducted IDIs and FGDs in local languages—Hausa (in Kano), Igbo (in Ebonyi), Luganda (in Masaka and Hoima), and Runyoro (in Hoima)—for better understanding and open description of respondents’ experiences. Self-reported cost questions, including what women and their families paid for transportation, care at home, alternative treatments, and medical and non-medical expenses, were asked in an open-ended format. Interviewers briefed potential interviewees on the study’s purpose, its voluntary nature, and the risks and benefits of participation prior to participants’ voluntary informed consent. Respondents received no monetary incentive for participating but were reimbursed (USD$6) for transportation costs, and were offered refreshments during FGDs. Interviews and discussions were audio-recorded, transcribed, and translated into English by local translators in Nigeria and Uganda. Multiple analysts (at least two individuals) read each document for content. A codebook was inductively derived based on analysts’ discussions of their analyses, with emerging codes identified. The final code structure was applied to all data with NVivo 11 and Atlas.ti software. Subsequent analytic memos were written on emergent themes and participant perspectives developed into the barrier and enabler domains on transportation, financial, and opportunity cost factors influencing access to services. Self-reported costs presented reflect both typical responses by women and communities; in some instances, when relevant, a range was provided to describe variability within and across settings. Ethical approval for this study (Protocol 733) was granted from Population Council’s Institutional Review Board in New York, with local ethical approvals from the Nigeria’s National Health Research Ethics Committee of the Federal Ministry of Health, Kano State Health Research Ethics Committee, and Ebonyi State Research Ethics Committee State Ministry of Health, in addition to Uganda’s Makerere University College of Health Sciences School of Medicine Research Ethics Committee.
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