“I am a person but I am not a person”: experiences of women living with obstetric fistula in the central region of Malawi

Abstract

BackgroundThe consequences of living with obstetric fistula are multifaceted and very devastating for women, especially those living in poor resource settings. Due to uncontrollable leakages of urine and/or feces, the condition leaves women with peeling of skin on their private parts, and the wetness and smell subject them to stigmatization, ridicule, shame and social isolation. We sought to gain a deeper understanding of lived experiences of women with obstetric fistula in Malawi, in order to recommend interventions that would both prevent new cases of obstetric fistula as well as improve the quality of life for those already affected.MethodsWe conducted semi-structured interviews with 25 women with obstetric fistula at Bwaila Fistula Care Center in Lilongwe and in its surrounding districts. We interviewed twenty women at Bwaila Fistula Care Center; five additional women were identified through snowball sampling and were interviewed in their homes. We also interviewed twenty family members. To analyze the data, we used thematic analysis. Data were categorized using Nvivo 10. Goffman’s theory of stigma was used to inform the data analysis.ResultsAll the women in this study were living a socially restricted and disrupted life due to a fear of involuntary disclosure and embarrassment. Therefore, “anticipated” as opposed to “enacted” stigma was especially prevalent among the participants. Many lost their positive self-image due to incontinence and smell. As a way to avoid shame and embarrassment, these women avoided public gatherings; such as markets, church, funerals and weddings, thus losing part of their social identity. Participants had limited knowledge about their condition.ConclusionThe anticipation of stigma by women in this study consequently limited their social lives. This fear of stigma might have arisen from previous knowledge of social norms concerning bowel and bladder control, which do not take into account an illness like obstetric fistula. This misconception might have also arisen from lack of knowledge about causes of the condition itself. There is need therefore to create awareness and educate women and their communities about the causes of obstetric fistula, its prevention and treatment, which may help to prevent fistula as well as reduce all dimensions of stigma, and consequently increase dignity and quality of life for these women.

Women's Experiences of Rectovaginal Fistula: An Ethno- Religious Experience

“…Having a negative attitude and feeling worthless bother them. The combination of the constant presence of problem and loss of role leads to feelings of worthlessness [30], and women lose selfconfidence [15], and the combination of these negative attitudes, physical symptoms, and the reactions of relatives result in these consequences in these patients. These consequences manifest in the form of mental crises, sleep disturbances and social isolation.…”

“…Consequently, depression and psychological complications are the consequence of the disease [8,10,12], and the problems somewhat persist even with this complication is repaired [13,14]. The obstetric fistulas have multiple effects as well as medical and psychosocial outcomes, and urinary and fecal incontinence makes it difficult to maintain proper health for individuals and to perform routine social and occupational activities [15]. Lack of awareness and knowledge of the cause and treatment of fistulas by family and community members may lead to misconceptions that may then expose these women to greater stress and stigma, making their overall quality of life very poor and unbearable [4, 14,16,17].…”

Association of socio-demographic and obstetric factors with obstetric fistula patients’ perceptions towards life fulfillment in Kitovu Hospital, Uganda

“…Studies mention of witchcraft, curses, and misfortunes as the perceived causes of fistula. 2,10 A participant in a study done in Uganda in 2019 stated that she was despised by her in-laws who blamed her for extending her curse to their family. 3 In another study in Malawi, findings indicated that a patient perceived the cause of obstetric fistula as either witchcraft or the devil at work.…”

“…Another one believed it was magical powers. 10 Considering these beliefs and anticipated stigma, patients tend to give up on social life in fear of embarrassment. Besides, stress incontinence is also common among successfully repaired patients.…”

“…Their routines are changed and their normal life trends are affected. 10 Therefore, their life fulfillment remains a dream as they are considered social misfits. Some give up on marriage and if they did, they would not want their new partners to know of their past experiences.…”