CHAPTER THREE

PROPOSAL FOR CASE STUDY OF OBSTETRIC FISTULA

Mary de Chesnay, Jessica Ellis, and Tracey Couse

In a sense, case studies are the most elemental form of qualitative research in that they provide an in-depth analysis of one or more cases—individuals who represent a phenomenon of interest. Case studies have a long tradition in medicine and nursing having developed from practitioners sharing information about the presentation of illness in a patient, the progression of the disease, and successful and unsuccessful treatment outcomes. Case studies might involve one or more cases and researchers use a variety of methods to address the research question. Methods include interviews, physiological measurements, psychological tests, and analysis of the patients’ diaries or journals.

The following proposal is an example of how one might design a study and how one presents such a study to an institutional review board (IRB). For this example, a fictional woman is described because we do not have access to a real patient, but wanted to bring the problem of obstetric fistula to the attention of the nursing community.

PURPOSE

The purpose of the proposed case study is to document the progression of obstetric fistula in a pregnant early adolescent who was married at the age of 8 years to a 30-year-old man from South Sudan. An obstetric fistula is a tearing of the vaginal or rectal wall that adjoins the urethra, resulting in leakage of urine and/or feces. The hole is always in the vaginal wall and may join either the rectum or the bladder leaking either urine or feces. Fistulas are of high risk in early adolescents in whom the pelvis is not developed enough to carry a child to birth a full-term infant. Prolonged labor results in excessive stress in the pelvis and perineum and can result in fistula. The prevalence of child brides in many cultures results in early childbirth soon after menarche and fistula related to pelvic underdevelopment with long, unsuccessful labor. The result is often a stillborn infant with subsequent tearing of the mother’s urethra. Included in this case study are the sociocultural and medical history of a child bride, how she became pregnant, progression of the pregnancy, how she was delivered, how the fistula was treated, and social and psychological impact on the child and family.

REVIEW OF LITERATURE

Qualitative research focusing on patient perspectives of obstetric fistulas appears to have increased over the past few years. Much of the research has been performed in Africa where there is a high incidence of obstetric fistulae. One retrospective observational study describes the factors leading up to fistula development and fistula treatment based on survey data obtained at a hospital in Goma of the Democratic Republic of Congo (Benfield, Young-Lin, Kimona, Kalisya, & Kisindja, 2015).

Researchers have used structured interviews of hospitalized women in Tanguieta, Benin, to explore the nature of obstetric fistulae, specifically cause, care obstacles, prevention, and reintegration (Nathan, Rochat, Grigorescu, & Banks, 2009). A different qualitative study performed in five fistula repair hospitals in Niger and Mali used obstetric fistula patient real-life experiences of hospital care to assess how the women’s views impacted care uptake and coping (Maulet, Berthe, Traore, & Macq, 2015).

Lived-experience qualitative research has been used to explore obstetric fistula experiences of African women in Ghana and Malawi (Mwini-Nyaledzigbor, Agana, & Pilkington, 2013; Yeakey, Chipeta, Taulo, & Tsui, 2009). One study concluded on a number of obstetric fistula-contributing themes and the other study explored how the obstetric fistula experience affected the victims and their families (Mwini-Nyaledzigbor et al., 2013; Yeakey et al., 2009). Qualitative studies have used surveys to explore both positive and negative religious coping strategies of women who have suffered obstetric fistulae (Watt et al., 2014).

Community awareness regarding risk factors, presentation, and prevention of obstetric fistulae has been studied through the use of focus groups of both males and females (Kasamba, Kaye, & Mbalinda, 2013). A couple of recent qualitative studies have looked at quality of life of women before and after obstetric fistula repair (Imoto, Matsuyama, Ambauen-Berger, & Honda, 2015; Singh, Jhanwar, Mehrotra, Paul, & Sinha, 2015). Mixed-method studies have been used to explore the birthing experiences of women with obstetric fistulae and the barriers faced to access quality care during labor and delivery (Mselle, Kohi, Mvungi, Evjen-Olsen, & Moland, 2011).

Finally, insight into the challenges faced by women who underwent surgical repair of their obstetric fistula, the long-term effects of women from multiple dimensions of postsurgical repair, and documentation of women’s health needs was accomplished through interviews and small focus groups in West Pokot, Kenya (Khisa & Nyamongo, 2012).

Although on the rise, qualitative studies focusing on obstetric fistula patient values, perspectives, and experiences as well as patient perspectives on reintegration needs remain scarce (Lombard, St. Jorre, Geddes, El Ayadi, & Grant, 2015). Also, there are few, if any, studies specifically looking at child brides and their unique perspectives. Much of the published quantitative demographic data describes age of patients, but qualitative studies of personal perspectives for this age group remain absent. The proposed case study adds to these research gaps by providing in-depth information from a person who has suffered fistula due to early adolescent pregnancy. Additionally, the proposed study offers a sense of relief and consolation for the numerous others who have suffered this isolating and devastating condition.

METHODOLOGY

Design

The design is case study research. Semi-structured interviews will be conducted with the participant, any of her family who agree to be interviewed, the surgeon who performed the fistula repair, and the health care workers who attended to her after the surgery. As the husband abandoned her, we will not attempt to interview him. With her permission, we will examine her medical records and the journal she kept during her treatment at the Fistula Clinic. If any family members accompany her, we will invite them to participate as well.

Sample

Onnab (pseudonym) is a 19-year-old Sudanese woman who was married as a child at 8 years, subjected to sexual intercourse by her husband before puberty, became pregnant at the age of 14 years, delivered a stillborn, and then suffered a vaginal fistula that resulted in abandonment by her husband after a surgery attempt to repair it failed. Raised in a village in South Sudan, she made her way home to her family of origin after her husband left and after a second surgical procedure failed to correct the fistula. However, the leakage of urine was constant and foul smelling, and her family required her to live apart from them in a small hut they built for her on the edge of the village. She was highly embarrassed and ashamed and soon became depressed. She returned to the fistula clinic and is currently recovering from a third surgery, which was successful. She was referred to the study by the American surgeon who attempted the first repair.

Setting

The interviews will take place in the fistula clinic where Onnab resides temporarily and where the staff are accessible. If any family members are nearby, they will be interviewed as well with Onnab’s permission. The area in which Onnab lives is located in South Sudan.

There are reportedly 2.8 doctors for every 10,000 people in South Sudan (Fistula Foundation, 2015). For the 35 million Sudanese, there are 33 hospitals with only 16% of all health care facilities powered by electricity (Alder, Fox, Campbell, & Kuper, 2013). South Sudan has one of the world’s highest maternal mortality rates and has an estimated 60,000 women who suffer from obstetric fistulae (Jacques, 2014; Modi Igga, 2015). It is unfortunate that there are limited fistula repair services in South Sudan to support the needs of these women (Alder et al., 2013). This is in part due a poor health care infrastructure, including political instability, lack of resources, and a scarcity of trained surgeons and support staff (Jacques, 2014).

The existing fistula clinics are sparse. The Dr. Abbo Khartoum Teaching Hospital Fistula Center in Khartoum is one of the longest running fistula programs in Africa, but the number of treated women is limited due to the poor health care infrastructure (Fistula Foundation, 2015; WAHA, 2011). A small fistula care team at Kassala Hospital provides limited routine services to obstetric fistula patients (Fistula Foundation, 2015). Nyala Hospital has a small ward, but it provides limited services due to a lack of resources (Fistula Foundation, 2015). Many of the described clinics are supported by grants from various organizations (Alder et al., 2013; Fistula Foundation, 2015). These agencies also fund fistula reparative clinics periodically in attempts to service these patients (Fistula Foundation, 2015; Jacques, 2014; Modi Igga, 2015). Between 2006 and 2011, eight campaigns were held, which resulted in fistula repairs for an estimated 150 women (Alder et al., 2013). Awareness and support are slowly improving. In 2012, more than 200 surgeries were performed at two of the fistula-supporting hospitals in South Sudan (Fistula Foundation, 2014).

Instruments

As in any ethnographic type of research, the primary instrument is the researcher and her or his skill at eliciting the story. Due to the sensitive nature of the data and need to protect the participant’s privacy, tape recorders will not be used, but extensive field notes will be taken by the American interviewers, a nurse-anthropologist experienced in cross-cultural fieldwork and a nurse-midwife. Interviews will be conducted in English with the English-speaking staff, and a bilingual Sudanese woman referred by the staff will be hired as an interpreter for interviews with the participant and her family. The interviewer will be trained in techniques of research interviewing as well as confidentiality. Criteria for selection of the interpreter include the following: older than 18 years, not a family member of Onnab, experience interpreting for medical situations, and fluency in English and Onnab’s dialect. The interpreter will sign a confidentiality agreement. Participant observation at the clinic will complete the data collection methods.

The semi-structured interview guides for the patient, health care staff, and family members are found in Tables 3.1, 3.2, and 3.3; however, it should be noted that this kind of research often digresses from the planned interviews as the participants have their own way of telling their stories and it is critical to respect their ownership of the interview.

Table 3.1  Semi-Structured Interview Guide for Patients

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