Scoping review descriptive statistics
Of the 212 abstracts and titles screened for relevance, 15 were considered relevant primary research, and included in the study.
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Literature on OF concentrated on the clinical management of the condition. A number of articles were also found on the social and economic impact of OF on the lives of the women. As shown in Fig 1, the majority of the articles included were published in 2015. None of the studies reviewed were published in 2009. This review only included articles that were peer-reviewed. All articles included, except one, were conducted in Africa.
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The article distribution was as follows: Medline 39, PubMed 82, CINAHL 83, Thesis 7 and grey literature 1. Twenty-six were duplicates. Thirteen abstracts were validated and identified as relevant in addressing issues of post OF repair in women.
Table 1 below shows that most studies reviewed used the qualitative approach.
Table 1: General characteristics of primary research publications
The studies reviewed addressed several aspects of women’s experiences of OF. Some articles focussed on self-support [10,11] where women became resilient and acquired skills for survival. Most studies reported that women who had successful OF repairs became advocates for other women suffering from the same condition [10,12–14]. Studies reviewed also identified types of support required by women who had undergone successful fistula repair. The women needed emotional support, financial support, educational support, information support, religious support, and support from family members.
There were variations in the data collection methods used in the studies reviewed. One study used both interviews and questionnaire; three studies used pre-validated standard survey questionnaires. Six studies used interviews only. Three studies used interviews and observation, and one study used survey and interviews.
Although support was described as tangible, such as provision of basic needs, many women were of the view that this did not suffice in addressing emotional and social needs . In some studies social support entailed assisting the women with household chores, and social interaction [15,16]. Support is also conceptualised in structural terms (e.g. being part of a social network) .
We used the Berkman’s model to guide our analysis of studies on the experience of social support by women after surgical repair. Berkman’s Model suggests that there is a link between social resources, support, and disease risk . A study conducted in Kenya on the lived experience of women before and after OF repair found that surgical repair and physical recovery did not automatically result in psychological well-being . Using Berkman’s (2000) model (Fig 1) support for women with OF was classified as either internal (self-support) or external. After suffering from OF, women developed resilience and a strong will to survive OF. They also developed a desire to support other women in similar circumstances.
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Many women in the studies reviewed reported loss of support from someone close to them after they developed OF [10,11,15,19,20]. Due to stigma experienced, affected women had poor role identity and isolated themselves from social participation . Some women were considered to have brought shame on their families because of the fistula, and, as a result, were forced to move out of the community . As such the women became resilient and believed they could save themselves .
Women who had suffered abuse from their husbands were reluctant to consider re-marriage and if not divorced, to get pregnant again [11,21]. Similarly, other women were reticent to form close bonds after being abandoned by close friends.
The major form of support reported in the studies was spousal support. The majority of women had separated from their spouses because of the OF. Many women were afraid that their husbands would not support them if they remained married to them. Berkman et al  argues that ongoing participation in social networks support the development of self-esteem. However, Berkman et al also acknowledges that not all social ties are supportive. This resonates with the experiences of women in some of the studies reviewed who were not supported by their husbands.
After OF surgical repair some women were not able to bear children. In cultures where the women’s role is to bear children and perform household chores, these women felt they had lost their personal identities .
Internal locus of control
Experiencing OF assisted some women to change their perspective on life. In the review four studies identified development or strengthening of internal locus of control as a positive outcome of suffering from OF. Some described themselves to have become stronger and more inner oriented than before . Another study found that most women did not want to seek support from non-governmental organisations, instead they believed they would make it on their own . Further, women who believed would make it on their own also desired to marry again and have children. Other studies demonstrated that women used religion to build their internal locus of control. A study done in Tanzania reported that religious institutions were important both as social structures and sources of influence on people’s behaviours and beliefs . One of the studies reviewed had found that women with higher levels of support exhibited higher levels of self-esteem .
Although women experienced reduction in stigma after OF repair, some continued to exhibit negative self-perception . The negative self-perception was found to be highly correlated with lack of social support . For some women negative self-perception was as a result of residual distress and anxiety .
Support from other people was therapeutic for women recovering from OF. One study conducted in Tanzania specifically reported that women with fistula had significantly less social support as compared to other gynaecologic patients . However, other studies reported that women were supported by their husbands, family, and church [15,19,21]. One important area of support women required after OF surgical repair was with their husbands to abstain from sex . The mere feeling of being accepted back in society where people depend on each other was emotionally and psychologically therapeutic for many women [20,27]. Women recovering from OF also valued home visits as these were a source of encouragement .
Since OF mostly affects people of low socio-economic status, most surgical repair services are free, therefore, most women find it difficult to request extra support after repair . Maulet et al.’s study found that treatment of OF was only focused on surgery and ignored psychosocial support. Women in the study reported that psychosocial support was only provided by non-governmental staff and other patients.
One study reported traditional values where being divorced was considered a stain on the woman’s clan . As such women divorced because of OF were often not accepted back into their family and clan, whereas other families accepted women suffering from OF. In such circumstances, women relied on their families because culturally family member have unbreakable ties .
Being accepted back into their communities was a psychological boost for women after surgical repair [10,20]. However, for the family accepting a woman recovering from OF repair has implications, in most African societies women are responsible for most chores which are taken up by other family members or husbands .
Another study described angry women who felt unsupported to make right choices in their childhood . These women believed the fistula they suffered was due to early marriage and consummating marriage before or soon after menarche.
OF primarily affects women of low socio-economic status [10,16]. Most studies reported that families pooled their resources to support women to access treatment and travel for follow-up hospital visits [10,15,16,20]. Women experienced a sense of failure when they relied on their parents and siblings for financial support . Obstetric Fistula caused women to be unable to engage in productive work. After recovery many women took a long time to regain their economic independence . As a result some women desired to be supported through education . Some more studies identified initiatives that supported women to attain economic independence by providing skills training such as embroidery, soap making, and tie dyeing [19,20]. However, evidence in these studies suggest that women did not find these initiatives suitable for their economic circumstances [19,20].
Some women in the studies reviewed grew up in families that discouraged girls from going to school and prepared them for marriage , as such they blamed the practice of discouraging girls from getting educated and preparing them for marriage at an early age. Women dropped out of school because of early marriages or pregnancies [14,20,23].
Berkman et al  observe that one of the least researched areas is the role of social networks in promoting health and access to life opportunities. To pursue life opportunities women desired to go back to school or be trained in some skill that would bring them livelihood. Educational support gave the women confidence in future achievements . However, some of the skills training programmes offered to women after OF repair were irrelevant to their circumstances or were not profitable in their villages .
Support with information about obstetric fistula
Of the studies that reported the need among women for OF information, only one  indicated that women had fair knowledge about the condition. Most studies reported that women were either not able to access information or ashamed to ask questions [10,21]. Women were only comfortable to ask questions after successful surgical repair. For some women, accessing information was a challenge due to language  or cultural barriers . As a result most women thought they were the only ones suffering from OF. In some cases, women and their families believed that the OF was as a result of being bewitched 
Some health workers were not trained in OF, as a result they were poorly informed about OF . Staff in the fistula center were also poorly informed about schedules for surgeries. As a result staff were not able to guide patients and guardians properly. This resonates with findings reported in Donnelly et al.’s study where women faced language barrier in their post-repair counselling and were not able to ask questions .
Women in studies reviewed were engaged is advocacy to support other women. They supported others by creating awareness about OF. Women flagged the importance of women given skills and knowledge on how to access health care and navigate their way through the health system [12,13,23]. In a study Drew et al.  asked Malawian women to suggest the forms of support that would be beneficial to other women with OF. The women suggested that women with OF should be supported to come out and speak up about their condition and access to OF repair.
Women who successfully integrated back into their communities were highly motivated to support other women suffering from OF [12–14]. In Drew et al.’s study almost half the women knew other women suffering from OF and were willing to support them . Similarly, women in Donnelly et al.’s study expressed willingness to participate in OF advocacy and assist other women get fistula repair .
Access to resources and material goods
As stated earlier, OF disproportionately affects women in developing countries. OF caused women not to work due to stigma  and loss of economic autonomy . In addition, OF brought about illness related expenses such as transport to the hospital, and for hygiene products. Women relied on family, relatives, and friends for support [15,16]. Some families were critical of initiatives that provided financial and material support to women only. They believed support should benefit the whole family since they are all affected .
Material support was a community practice. Women reported that when returning to their village family and friends welcomed them with songs, gifts and food . To assist women reintegrate into the community after repair relatives bought soap, lotion, and clothes to ensure that they were able to maintain hygiene . Some women disliked the dependence on others for material support, and wished to have a home and economic independence . Support with material goods was important for women and their families because some sold household items to pay for illness related expenses .