The Adverse Social, Economic, & Psychological Consequences of Fistula for Women

Socio-economic challenges faced by fistula survivors following Obstetric Fistula Surgery

A condition such as OF impacts a woman, the community and the family unit, and can have devastating effects. (Jarvis, 2017; Mselle, et al., 2011). Only a few studies have examined the adverse social, economic, and psychological consequences of fistula; nonetheless, these studies provide some empirical evidence that treatment, counseling, social support, and rehabilitation may significantly improve the physical and mental health of affected women, and provide these women with a second chance at participating in family life thus simply repairing a fistula is not the end of their challenges. The problems faced by the women mainly fall into three categories; emotional and psychological trauma, social and economic difficulties, however this literature review will mainly focus on the social and economic challenges.

Social challenges

Erving Goffman (1963), defines stigma as “an attribute that is deeply discrediting.” His definition of stigma focuses on the public’s attitude toward a person who possesses an attribute that falls short of societal expectations. The person with the attribute is “reduced in our minds from a whole and usual person to a tainted, discounted one.” From a public health perspective, stigma or discrimination is associated with worsened health outcomes and is thought to be linked to reduced self -esteem and quality of life (Mselle, 2011).

Among fistula patients, stigma manifests itself variously from subtle to blatant discrimination and isolation, before and continues even after corrective surgery. It is even worse for those whose corrective surgery was unsuccessful. Obstetric survivors are labelled as having had an illness that left them blemished and are therefore not fully accepted back by their communities. Stigma is directed at the women both by their families and the community, who isolate them, subject them to negative comments about their previous condition and in some instances do not allow them to participate in household, social and even economic activities (Khisa, 2016). For instance, in a study conducted by Khisa (2010), the women reported that even though they were invited to social events like wedding and community gathering, they were not allowed to help with the cooking or serving guests despite the fact that they had healed. In the end, it felt to the survivors as though the illness had left a permanent stigmatising label. Even though they were no longer leaking urine and faeces, their outlook to the rest of the world had not changed. This treatment by the community or family members not only reduces the survivor to a lesser human being impeding their chances at improving their lives Goffman (1963), it also leaves them with feelings of reduced social worth.

According to (Khisa, 2010; Mselle, 2011), after surgery, most survivors believe that their previous illness has lessened their life chances of a normal social life. The survivors are often shy to relate with other people, possibly because of internalized stigma before surgery. For most, this is because of the self-doubt that stems from the perception that if one has been operated on, she is not normal. This kind of feeling often leaves survivors isolating themselves from other members of the community after the surgery. Since they shy away from social events, their reintegration is really challenged as they have little or no activities to do with other community members.

Unsuccessful repair

The greatest challenge for obstetric fistula survivors is unsuccessful repairs. Even with fistula closure success rates at 65-95%, there are instances where continence may not be achieved with a successful fistula closure if the urethra is not functional or the continence mechanism has been destroyed. As many as one-third of women experience persistent incontinence post-surgery (Byamugisha, et al., 2015).

The continued urinary and /or faecal incontinence result in continued social isolation and stigma of survivors given that their situation has not changed. This leaves the survivor suffering like they did before the surgery resulting in some attracting thoughts of being cursed or being blamed by the community and family members for not having healed. (Khisa, 2010). Both parties expect that after surgery, a woman will be healed, but as is the case with unsuccessful repair, it is usually the latter.

Economic Challenges

After OF repair, women are instructed not to do strenuous work. This threatens their ability to earn money because work in rural areas where most of the survivors live requires manual labour. (Jarvis, et al., 2017). Most feel challenged re-engaging in economic activities after the repair since they have been removed from the workforce for so long. In studies conducted in Ethiopia and Kenya on the challenges that women face after fistula repair (Donnelly, et al., 2015; Khisa, 2010), the women reported that they no longer had the strength or stamina to perform the work they were responsible for before the fistula. Many, particularly those who were unmarried, lamented not being capable of doing more physically taxing work which could make prospective employers reluctant to hire them. This loss of income exacerbates a survivor’s economic hardship and threatens their already tenuous livelihood.

Similarly, Women’s Dignity and Engender Health, (2008) and Ojanuga, (1994) highlighted the economic challenges that survivors faced after surgery. They looked at the economic pressure that obstetric fistula exerted on the family of a patient. They noted that income was lost through different mechanisms starting from the direct cost of fistula related care, time taken away from the farm, the survivor’s inability to work because of stigma, the health effects of the fistula, and the need to constantly wash themselves or change clothes for those with unsuccessful surgery. All the above affected families because as a result one less person was not working either in the home or on the farm. This doubled the work for the rest of the family members as they took on all the work that the survivor was previously doing meaning they had to forgo the income that the women might have previously been contributing which reduced on the family income

Due to widespread poverty, there is a strong, shared desire for women to become self- sufficient and improve their lives by contributing to household income. Although men work to provide for major cash expenditures, women’s work provides for the family’s basic needs. (Donnelly, 2015). Therefore, a woman’s economic livelihood has implications not only for herself but for the livelihood of her family because it is positively associated with well-being by way of more spending allocated to food in the home and providing for their children. (Jarvis, et al., 2017) However, although women are highly motivated to expand their income through engaging in income-generating activities, they are severely limited by lack of start-up capital or credit to set up business ventures.

Also, some survivors have felt that lack of economic empowerment was potential barrier to full integration after surgery as they find themselves dependent on their spouses and other relatives. Being able to work and provide for one’s family is a source of pride and intrinsic self-worth. When women were interviewed in two studies conducted by Khisa (2010; 2016) in Kenya, most noted that, when they returned home after surgery, they needed capital to buy food stuff and to provide for their children. The biggest worry coming home for most of them was finding capital to care for their children and family. Most expressed that they did not expect their husbands to buy care for every detail of the personal needs or family hence it was imperative that they found work or capital to start a business immediately upon returning home.

With every successful fistula surgery, it is assumed that the patient will have a smooth reintegration to daily living; unfortunately these patients’ still face multifaceted challenges when they return back home thus simply repairing a fistula isn’t the end to their challenges. Understanding these challenges faced by women before and after fistula repair will help to base the required intervention on clearly understood problems.

Post-repair interventions

(Engen, et al., 2016), defines rehabilitative interventions as planned and multidisciplinary measures or treatments which are designed to assist the users in improving or maintaining their level of functioning. Rehabilitative interventions are often times complex and multidimensional and their effects may be influenced by individual processes and interactions between different elements of the interventions. (Whyte, et al., 2014). From an obstetric fistula context, an intervention program should be in position to take care of the physical, mental, social, and economic damage that has been commonly inflicted on girls and women with obstetric fistula. (Mohammad, 2007).

However, there is no clear definition for the term Post-repair interventions as this term is defined within a program contextual basis. Thus, when one talks of post- repair interventions in the obstetric fistula context, two words: ‘rehabilitation’ and ‘reintegration’ are synonymous with the term post-repair intervention and are used interchangeably. Lombard, (2015) defines rehabilitation and reintegration as any experience that helps improve women’s lives after obstetric fistula surgery while Mselle, (2012) defines reintegration as the process of helping women affected by obstetric fistula return to the life they lived before they developed a fistula. This includes how women adjust and reconnect to employment, families, communities, and social life in order to restore their lost dignity and respect and to increase their self-esteem.

More so, the term Post-repair interventions in the obstetric fistula context encompasses all intervention support given to fistula survivors after fistula surgery in terms of skills training, personal hygiene products, food, transport, start-up capital, educational support to conduct outreaches or fistula advocacy programs. Any activity that contributes to the improved social, economic and physical life of a survivor once they return to their community is regarded as a post-repair intervention measure.

The need to integrate prevention and surgical treatment strategies for obstetric fistula with rehabilitation and social reintegration programmes is increasingly being recognized, (Donnelly, 2015). A small but growing body of research on women’s experience following fistula repair surgery conducted in Ethiopia, Ghana, Kenya, Tanzania and Malawi to help clarify rehabilitative needs following fistula surgery has shown that reintegrating survivors using interventions can strengthen their capacity to care for themselves in the future and promote their overall socio-economic wellbeing. (Ahmed & Holtz ,2007; Pope, et al., 2011; Khisa & Nyamongo, 2012; Mselle, et al., 2012; Donnelly, et al., 2015; Jarvis, et al., 2017; Yeakey, et al., 2009).

Fistula survivors are often eager to invest in their economic independence, yet many feel incapable of doing so. The notion of perpetuation of dependency on family members even after corrective surgery for all their personal and basic needs often fuels the desire for economic independence. In a study done by Donnelly, (2015), women expressed desire to access credit or resources to help them launch a small business or an income- generating activity.