Living with constant leaking of urine and odour: thematic analysis of socio-cultural experiences of women affected by obstetric fistula in rural Tanzania

The ‘three bodies’

Obstetric fistula is a fundamental bodily condition, which is perceived and experienced in particular cultural and social contexts. The ‘three bodies’ approach views the body as a physical and symbolic entity that is both naturally and culturally constituted [28]. The approach represents three levels of analysis. The ‘individual body’ is the biological body, which is acquired by birth and focuses on self-lived experiences including self- perception or image, feelings and sensations about the individual-self body. However, one’s self-understanding changes with the social context, within social relations. The ‘social body’ (the body as a symbol), is a socially defined and culturally constructed body, the body that is needed in order to live within a particular society and cultural group. The social body influences and controls the physical functioning of individuals within a society and sustains particular views of society and of social relations. The ‘body politic’, is about power and power relations. Body politic exerts control over all aspects of the individual body including behaviour in reproduction and sexuality, health and sickness, work and leisure and forms of deviance. The body politic shapes the body according to the needs of the society. Generally, the three bodies’ approach explains how bodies are understood and how different meanings are attached to the bodies, what is regarded as acceptable or unacceptable in the society, and the power and control exercised on the body.

Study design and setting

This was a descriptive qualitative study where both individual interviews and focus group discussions (FGDs) were used to gather women experience of living with obstetric fistula. Combining both individual interviews and FGDs enhanced data richness and trustworthiness of the findings [29]. The study was conducted at the Comprehensive Community Based Rehabilitation in Tanzania (CCBRT) hospital. CCBRT is a private non-governmental organisation (NGO) in Dar es Salaam that serves as a major service delivery point for obstetric fistula repair in the Coast region. It also receives patients from the central and eastern part of the country. It performs about 400 vesico-vaginal fistula (VVF) and recto-vaginal fistula (RVF) surgeries each year. The hospital has a 21-bed fistula ward, and a hostel where fistula patients live while awaiting fistula repair, and has an active-case finding program that trace patients in rural areas and bring them to hospital for surgical treatment free of charge. The active-case finding program is achieved using mobile-phone based money transfer service to send cash to women with obstetric fistula for transportation costs to come to CCBRT.

Selection of participants

Twenty-eight conveniently selected women lived with obstetric fistula participated in this study. The inclusion criteria included: 1) women with fistula admitted at the CCBRT hospital for surgical repair 2) ability to speak Kiswahili and 3) willing to participate in the study. Women, who met the inclusion criteria, were briefed about the purpose, method and principles of confidentiality, and thereafter a suitable time for interview was arranged. In total, 16 women (9 women before fistula repair and 7 after repair) were interviewed, whereas 12 participated in the FGDs.

Interview procedure

Focus group discussion (FGDs)

Two FGDs each composed of six participants were moderated by the first author and attended by an observer and a note-taker. One discussion group comprised of women with obstetric fistula before they had fistula repair and the other with women after fistula repair. Participants were encouraged to participate actively in the discussion and were given equal opportunity to contribute. They were informed that there were no right or wrong answers. Discussions began by reading aloud a hypothetical scenario (Fig. 1), describing potential challenges faced by women living with fistula. The scenario was used as guide to stimulate the discussion. An audio recorder was used to record discussions and was supplemented by handwritten notes.

Data analysis

A person fluent in Kiswahili transcribed the audio recorded interviews and FGDs. The Kiswahili transcripts were then translated into English and thereafter another person with good command of both Kiswahili and English crosschecked the accuracy of translations. Two researchers examined all transcripts for accuracy and completeness against the original notes before data was ready for coding. Gaps identified or clarifications needed were discussed and corrections made accordingly. The thematic analysis [32] approach guided analysis of the data. The procedure included familiarisation with the material, identification of the codes, searching for themes, revision of the themes and interpretation. All transcripts were carefully read sentence by sentence many times to become familiar with the content. Phrases and sentences related to the women’s socio-cultural experiences of living with obstetric fistula were coded in the margin of the transcripts. The codes that were similar or connected to each other were organised together to form themes. To strengthen content validity, multiple coding were considered, researchers scrutinised all codes [33] and finally agreed on formulation of themes.

Ethical consideration

Ethical clearance was obtained from the Muhimbili University of Health and Allied Health Sciences (MUHAS) Research and Ethical Review Board, whereas the CCBRT hospital granted permission for data collection. Participants were fully informed about the purpose of the study and the use of audio recorder during interviews. It was made clear that information provided would be treated with strict confidentiality and would only be used for the research purposes. All names used are fictitious. All participants gave a written consent to participate in the study.

Keeping clean and neat

Earning an income

Maintaining marriage

Keeping association

Living with obstetric fistula and the ‘Individual body’

Because of women’s inability to restrain urine and or faeces, and the resulting smell, genital sores, discomforts, feeling of shame and stigma; women were not welcome to participated in socio-economic activities nor contribute to the family earnings and development as expected. Women were unable to work, or work to their capacity because fistula limited their chances to access jobs. Therefore, women could not earn an income through farming, business, hawker or employment. Studies have reported that women who were employed lost their jobs because of the condition [17]. In general, women experienced severe reduction in their source of independent income, and increased their dependence on others [34]. Women in this study had bad feelings about their inability to earn a living and failure to support their family financially, as their financial assistance to their families and relatives was important. It is likely that due to failure of these women to support their family and relatives, resulting in the whole family to revolve into the poverty circle, especially if the woman was the family’s breadwinner. Overall, being economically independent is directly linked to the sense of pride and respect.

Following constant leaking of urine and smell, it is very difficult for women living with obstetric fistula to keep clean and neat. It was hard for them to get cash that would allow them to buy scented soap and lotion to alleviate smell. Studies [35] have reported that women who lived with obstetric fistula used scented powders and perfumes to cover for the offensive odour. However, many women with obstetric fistula in this study and others [9, 20] were from remote rural areas where water supply is frequently unavailable, lack basic education and have no stable income.

Women’s responses during interviews and discussions regarding their experience of living with a fistula were how would ‘other people’ think, see, and speak about them with respect to the leaking of urine? At large, women experience reflected the societal perceptions about an ideal woman and their knowledge about obstetric fistula. However, peoples’ perceptions on women affected by obstetric fistula may be linked with their poor knowledge and misconceptions about causes, treatment and prospects after fistula treatment [36, 37]. Many people do not know that after fistula treatment women could regain their reproductive abilities, conceive and deliver live healthier babies [20, 21]. Women affected by obstetric fistula in this study were perceived as abnormal due to the leaking of urine or faeces and the smell. These experience can also be explained by “the looking glass self” concept [38], that women living with obstetric fistula shape their self-concept basing on the reflections of the response and evaluations of other people around them, and the understanding and perceptions of obstetric fistula in the society.

Living with obstetric fistula and the ‘social body’

A woman in most of African cultures is expected to assume ascribed marital and social responsibilities. Continuous leakage of urine and or faeces, the foul smell and genital sores make the woman unable to assume her socio-cultural expected roles. A healthy sexual life is the source of children and family bonding, lack of it contributes to women loss of self-esteem about their womanhood [39]. Women in Tanzania, as in many Sub Saharan African societies acquire value from their husbands and society through marriage. They gain sense of self-esteem through their ability to bear children and fulfil their roles as women and wives [40, 41]. Full womanhood is attained through being a mother and there is no worse misfortune for a woman than being childless. A barren woman is regarded as incomplete [42]. Therefore, having children is the most fundamental value for women and men [42, 43], as it is commonly perceived as the main purpose of ones being. Living with uncontrollable leaking of urine and symptoms associated with it for many years prevent women from having sexual intercourse with their husbands and bearing children. Many women affected by obstetric fistula lost their babies during the birthing process [41]. Therefore, the need for having a baby is obvious [27]. Nearly all study participants had strong negative feelings about their inability to have sex with their husbands because this denied them intimacy and bonding expected in marriage and desire to have children.

In the eyes of the society ‘the social body’, women who had no children were considered as humans of lesser value and may at times become targets of many rude insults and impolite treatment. Eleven of 28 women in this study were divorced or abandoned by their husbands, findings that are consistent with those found by others [17, 41]. As indicated in other studies [35] husbands of women living with fistula divorced their wives because they were disgusted with the condition and their wives inability to have children. Generally, the husband as an individual does not make the decision to divorce his wife, rather is a family matter. It is common for the husband’s family members and relatives to ask the husband to divorce his wife and marry another woman who would bear children [44].

The respect, honour, and sense of pride associated with having children [24, 40] may explain why women who had children before developing fistula had a relatively more positive experience of living with fistula than their counterparts who did not have children [41]. Studies [24, 45] have reported that women who had children before fistula occurrences had their husbands beside them for support. Husbands commonly allowed their wives to live in the family compound, cook and assist with children rearing even if they would opt to have relationships with other women. Women consistently reported that it would have been better if they had children. It is likely that these women compared their experience to those who had children before they had fistula. Many women lived with fistula who managed to sustain their marriages however, they reported to have had no intimate relationships with their husbands [44].

Obstetric fistula and the ‘body politic’

Obstetric fistula occurs when labour is allowed to progress for a period lasting from several days to a week without quick intervention, usually a caesarean section [46, 47]. In Tanzania many women live far from where adequate health facilities are located [25]. Although primary health facilities are within 10 kilometres reach, these facilities however do not provide comprehensive emergency obstetric care (CEmOC) [48]. CEmOC health facilities are those capable of providing basic emergency obstetric care (BEmOC) and also performing caesarean section and blood transfusion. Studies have shown that getting to the health facility, does not assure women access to quality birth care [25]. Health care facilities especially those in rural areas are often understaffed with inadequate utilities, equipment, supplies and medication [49], and commonly lack skilled personnel [50]. In spite of the national health policy emphasis on equity in availability and access to health care, this has not yet been realised. Many women still give birth at home [50]. Only 50 % of women in Tanzania give birth in the health facilities and about 51 % of these receives skilled birth care [1]. Increasing the proportion of births with skilled attendance is advocated as one of a key factor in reducing maternal and perinatal mortality and morbidity [51].

Maternal mortality and morbidity in Tanzania is still unacceptably high [1]. Experiences from countries with low rates of mortality and morbidity reveals that access to good quality obstetric care is vital in reducing maternal mortality including obstetric fistula [51]. To influence access and quality of obstetric care for all individuals in reproductive age group in Tanzania, the Government must ensure availability of skilled personnel and an enabling environment for them to work effectively. Motivated skilled staff [52] and solid health systems are associated with provision of quality services [3]. The total budget allocation for health need to be increased to at least 15 % as suggested in the Abuja Declaration in 2000 as the minimum budget for health [53] to improve quality of obstetric care. Solid health systems would help in early diagnosis and management of obstetric complications and thus preventing obstetric fistula. Further, the Government has to ensure that women living with obstetric fistula get treatment by ensuring that many Government health facilities engage actively in performing fistula surgeries. Rehabilitation mechanisms for women affected by obstetric fistula put in place to increase women’s access to fistula treatment, improve their sense of worthiness, and maintain their dignity as women and wives in the eyes of people in the society.

This study demonstrates that socio-cultural context largely influenced women experience of living with obstetric fistula. Drawing from the health promotion perspective, an individual’s wellbeing is best considered within the context of the family, and the family within the context of its community [54]. Women experience of social exclusion and the feelings of worthlessness in this study are mainly a response on how people in the society perceived a woman as “normal or natural” basing on the socio-cultural understanding that in turn influences their actions towards women living with fistula.

Limitation of the study

This study was limited to 24 women affected by obstetric fistula. Since women were conveniently recruited from CCBRT, a specialised hospital for fistula repair, it is likely that women who managed to seek care were those who received support from their relatives and communities, whereas those who could not come to the hospital had more severe negative experiences of living with fistula. Nevertheless, this study did not aim at transferability or generalizability of findings, but rather to understanding and shed light on how women experience living with fistula in Tanzania.