Female genital fistula is the occurrence of an abnormal opening between the vagina and the bladder or rectum causing urinary and/or fecal incontinence. Global estimates suggest that more than half of a million people are living with this condition and that the burden is almost exclusively in sub-Saharan Africa and Southern Asia.1 In Uganda, 0.5% to 4.3% of women have reported lifetime symptoms of female genital fistula.2 Underfunded health systems and overburdened health workforces are among the intersecting reasons that informal caregivers such as family members or close friends are necessary to support fistula patients across the care continuum.3–5 Even though informal caregivers provide significant nonmedical support for their patient in both community and facility settings, literature summarizing their perceptions remains sparse.
The specific positionality of informal caregivers equips them with unique insight into the lived experiences of women with female genital fistula.6–8 A recent study in Guinea asked a myriad of fistula care stakeholders—including informal caregivers—for their perspectives on how to improve quality of life for women post-repair and reported a universal recommendation for multidisciplinary strategies involving social and economic support in addition to medical follow-up.9 These findings expand upon recommendations previously published from a patient perspective among women with fistula in Malawi which focused on social aspects of increased awareness and education toward reducing stigma to improve quality of life.10 Care recommendations have also been documented from clinical providers, though prioritize the implementation of approaches proven to be clinically effective such as bladder catheterization duration.11 Community-based perspectives provide an important supplemental viewpoint about local priorities and needs. Additional investigation is needed to understand the nuanced needs across fistula-prevalent settings and to inform approaches that advance positive post-repair health outcomes and reintegration.
In a recent study exploring the experiences of informal caregivers of women with fistula, we thematically analyzed 43 participant responses from in-depth interviews (n=21) and five focus group discussions (n=22) of primary informal caregivers of women with female genital fistula seeking care at Mulago National Referral and Teaching Hospital in Kampala, Uganda in 2015.12 We descriptively analyzed quantitative data from caregiver’s sociodemographic and caregiving characteristics questionnaires (n=43). Using a convergent mixed-methods approach enabled investigation of the path to caregiving, the roles and responsibilities of caregivers, and the perspectives of caregivers on a variety of topics concerning the experiences of both caregivers and their patients. While the previously described manuscript centered caregiving experiences and outcomes, “Support recommendations” from the caregivers regarding mechanisms and strategies to improve the fistula care landscape emerged as a unique and prominent code throughout qualitative data analysis is further investigated and summarized here.
Nearly all the informal caregivers of patients with female genital fistula interviewed (95%) for the study described above were the woman’s family members which suggests that they may have intimate knowledge and an important perspective about the impact that fistula has had on their relative’s life.12 Most informal caregivers also described living and/or staying in the same household as their patient. Broadly, informal caregivers experienced a similar socioeconomic context, educational attainment, and other shared demographic characteristics including the reality that most (84%) were female. Furthermore, most informal caregivers in our study reported providing care for an average of 22.5 hours a day and described a variety of caregiving tasks across community and hospital settings. The near continuous presence with their patient and the provision of personal caretaking tasks provides a unique appraisal of persistent gaps in care across the fistula continuum and strengthens their ability to discern potentially effective strategies to support fistula patients more comprehensively.
RECOMMENDATIONS FROM CAREGIVERS
Informal caregivers were asked for their ideas about what would improve the recovery and reintegration experiences of women with female genital fistula. Note that in this study, we have purposefully maintained informal caregiver’s use of the word “patient” to describe their care recipients. We categorized caregiver recommendations into two primary themes according to repeated patterns that emerged across responses: 1) economic empowerment, and 2) community capacity building. Most caregivers discussed topics within both themes at different points of their narratives; quotes demonstrating various aspects of each theme appear throughout Tables 1 and 2. Several key subthemes emerged for each primary theme. Reoccurring recommendations within economic empowerment included the provision of money, food, and drink to meet nutritional needs, and supplies such as pads or soap (Table 1). Subthemes of community capacity building included community education about fistula, increased engagement of males, improved belonging among fistula patients, and building support for holistic reintegration post-repair (Table 2). Recommendations throughout these themes were shared at a similar frequency by both female and male informal caregivers and by individuals providing care for various amounts of time.
Recommendations for economic empowerment were primarily aimed at improving the patient’s status during and after their hospital stay. Clear subthemes emerged centering the need for provision of money, nutrition, and supplies (Table 1).Informal caregivers justified the provision of money by explaining the diversity of needs from patient to patient and by suggesting that unrestricted funds would empower her to get what she truly needs. They also specified food and beverages as well as supplies such as pads, soap, and medication to manage and mitigate the symptoms of fistula and surgical repair as more universally shared needs. For the latter two subthemes, some informal caregivers recommended the provision of cash to fistula patients while others suggested the direct provision of the resources to assist with the management of fistula symptoms. Additionally, many informal caregivers made recommendations across several of these topics.
One informal caregiver also pointed out that the fistula patient may have been the primary income-earner in the home, responsible for school fees, household rent, or medical expenses, among other costs. This informal caregiver explained that the provision of supplies including pads, food, clothing, and medication within the hospital setting benefits both the patient and her family who may otherwise experience a “standstill” as resources are diverted to cover treatment-related costs. Caregivers further hypothesized that the provision of additional resources and support within the hospital setting may contribute to reduced recovery time and an earlier return to income generation. For example, the provision of accurately dosed medication prior to discharge would make repeated trips to a pharmacy unnecessary, saving both time and money.
Informal caregivers were quick to specify that typical income-generating activities involving intense manual labor would no longer be feasible for their patient. In cases where a patient would be advised not to return to her pre-fistula work upon reintegration, she may require extended provision of money, nutrition, and supplies in addition to job-training support toward new income-generating activities. One informal caregiver specifically suggested sewing lessons while another proposed entrepreneurship training toward running a vegetable stand. Several mentioned that the temporary provision of economic empowerment alongside job training for long-term support would also address the fact that many patients feel ashamed to ask for help even though they would suffer without it.
Community capacity building
Recommendations for fistula-related education included ideas aimed at prevention, stigma reduction, and reintegration (Table 2). Informal caregivers were keenly aware of building community capacity to support women before, during, and after experiencing female genital fistula. Despite having heard of fistula, caregivers described not understanding how it could be prevented until after accompanying their patient in their experience. One caregiver shared that witnessing her sister-in-law’s experience encouraged her to not begin childbearing “too early” and to seek support when she does. Informal caregivers suggested widespread educational efforts engaging television stations, radios, and newspapers, as well as schools, to ensure community members understood common contributors to fistula including early childbearing, lack of emergency obstetric care, and sexual assault. It was further recommended that campaigns promoting the provision of surgical repair be continued to ensure all women that experience fistula know that it is treatable, and very often curable. Caregivers also went on to suggest that education campaigns be expanded to include education about reproductive health more broadly. It is possible that widespread community education about fistula causes, management, and repair would also reduce social stigma surrounding the condition.
Several informal caregivers described the need for specifically engaging their patient’s spouse and other males in the community. In these instances, their comments were aimed toward addressing harmful social stigmas that further isolate women with female genital fistula and increase risks of infidelity and/or divorce. When asked about their patient’s experiences with reintegration following repair, informal caregivers suggested that many women avoid their spouse even during recovery following a successful surgical repair for fear of being perceived as ‘damaged’ or of being rejected. On the other hand, some described an increased risk of forced sex from intimate partners, which can add risk of repair breakdown. One female informal caregiver advised her patient to spend time healing at the patient’s parents’ home as the husband “might not control himself”. A male, husband, informal caregiver recommended education “on how we can handle our wives” and suggested that many fistula patients could be helped if “we do not force them into sexual activities”. Informal caregivers admitted that targeting spouses, specifically, could be a challenge as they may not be likely to attend treatment with the patient and instead suggested broad dissemination of education.
There was also recognition for the need to increase their patient’s sense and experience of belonging both during fistula and during reintegration, following repair. Several informal caregivers specifically described the need to help their patient understand and believe that they were “not alone”. Some specifically recommended women’s groups or community recognition of informal caregivers to ensure allyship and advocacy for patients throughout the intense experience of fistula and surgery. Several informal caregivers perceived that increased community education may positively influence belonging and reintegration following fistula by equipping family and friends with knowledge about how to provide tangible, emotional, and psychological support along with informed encouragement about the likelihood of healing. Many perceived that their patient’s experience was improved simply by knowing they were “loved”. Still one informal caregiver explained that “…our support is not enough”, underscoring the need for broader systemic and community capacity building, beyond informal caregivers, to foster a sense of belonging for women with fistula as well as for ensuring holistic treatment and reintegration.
Other recommendations and inspiration
Less frequently, informal caregivers described the need for and perceived benefits of increased access to health care as well as community health education and services; spiritual support including prayer and engagement with elders or religious leaders; and support for informal caregivers. Of these less common recommendations, individuals that had been caregiving for a year or more exclusively highlighted the need for improved mental health care for fistula patients. Furthermore, while both male and female caregivers recommended increased access to mental health support and improved accessibility to medicines, other topics emerged within more gendered patterns. Males more frequently described the need for increased hygiene and sanitation, particularly in hospital settings, and were more likely to recommend providing education, support, and care to informal caregivers to better support their patient. Females, on the other hand, were the only informal caregivers to recommended increased spiritual support. Several female caregivers suggested that recognition and acceptance that “God is the one who heals” enabled their patient to cope and persist.
Informal caregiver recommendations were motivated by a deep desire for their patient to fully heal and return to the life they lived before experiencing fistula. One informal caregiver shared "What I want for my sister when she heals is to continue with her education." Another informal caregiver echoed this hope and dreamt that community members would “get [a] loss of words” when they witnessed her patient’s full healing (Table 2). Participants recognized their caregiving role as critical to sustaining their patient through the fistula experience while casting a vision for broader social and support shifts to ensure they could fully heal and thrive.
The perspectives of the informal caregivers in this study align with prior acknowledgement of the need for a resourceful and sensitive response to fistula from both clinical medicine and global public health, not unlike HIV/AIDs and tuberculosis strategies.5 Alongside continued investigation of successful support of patients with stigmatizing physical health conditions in similar settings, our findings lead us to believe that several concurrent investments to both fistula patients and their communities would improve the experiences of women with fistula. Recommendations from informal caregivers primarily suggested community- and societal-level changes to reduce experiences of impoverishment and marginalization that are exacerbated by fistula, aligning with prior recommendations for a holistic approach across the care continuum.13–15 These findings suggest that simultaneously strengthening women’s economic status and building her community’s capacity by broadly building fistula-related awareness, knowledge, and skills, is likely to improve the livelihoods and wellbeing of both fistula patients and their informal caregivers by mitigating financial burdens and lessening isolation. While economic empowerment will require action by the Ministry of Health or other high-level actors, community capacity building is possible with initiation by key community leaders and stakeholders as well as increased involvement of male partners beginning with fistula prevention and continuing through reintegration. These findings underscore the need for multidimensional strategies that mitigate post-repair vulnerabilities while promoting human flourishing.9 These recommendations add to the growing evidence that a variety of sectors must collaboratively invest in fistula reintegration to meet the unique needs of women that have experienced fistula and to ensure opportunities for health and dignity.
Ashley Mitchell: conceptualization, analysis, writing; Hadija Nalubwama: investigation, data curation, review & editing; Justus K. Barageine: investigation, supervision, project administration; Suellen Miller: review & editing, funding acquisition; Abner P. Korn: review & editing; Josaphat Byamugisha: review & editing; Susan Obore: review & editing; Alison M. El Ayadi: conceptualization; review & editing; supervision; project administration; funding acquisition.
The authors completed the Unified Competing Interest form at http://www.icmje.org/disclosure-of-interest/ (available upon request from the corresponding author) and declare no conflicts of interest.
Ashley Mitchell, MPH
Graduate Student Researcher
550 16th Street, Floor 3
Institute for Global Health Sciences
University of California, San Francisco
San Francisco, CA 94158
Email: [email protected]