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Introduction: Obstetric fistula (OF) is a devastating birth injury, which leaves a woman with leaking urine and/or feces accompanied by bad smell, a situation that has been likened to death itself. The condition is caused by neglected obstructed labor. Many factors underlie fistula formation, most of which are preventable. The main purpose of this study was to explore labor and childbirth experiences of women who developed OF with a focus on accessibility of care in the central region of Malawi. Methods: We conducted semi-structured interviews with 25 women with OF at Bwaila Fistula Care Center in Lilongwe and in its surrounding districts. We interviewed 20 women at Bwaila Fistula Care Center; additional five women were identified through snowball sampling and were interviewed in their homes. Data were categorized using Nvivo 11 and were analyzed using thematic analysis. The three delays model by Thaddeus and Maine was used for data analysis. Findings: The majority of women in our study suffered from OF with their subsequent pregnancies. All women experienced delays in one form or another consistent with the three-phase delays described by Thaddeus and Maine. Most of the participants (16) experienced two delays and 15 experienced second-phase delay, which was always coupled with the other; nine participants experienced delay while at the hospital. None of the participants experienced all three delays. Most decisions to seek health care when labor was complicated were made by mothers-in-law and traditional birth attendants. All but two delivered stillborn babies. Conclusion: Testimonies by women in our study suggest the complexity of the journey to developing fistula. Poverty, illiteracy, inaccessible health facilities, negligence, lack of male involvement in childbirth issues, and shortage of staff together conspire to fistula formation. To prevent new cases of OF in Malawi, the above mentioned issues need to be addressed, more importantly, increasing access to skilled attendance at birth and emergency obstetric care and promoting girls’ education to increase their financial autonomy and decision-making power about their reproductive lives. Also men need to be educated and be involved in maternal and women’s reproductive health issues to help them make informed decisions when their spouses end up with a complicated labor or delivery.
We employed a qualitative research design, with a social constructivist perspective.16 Social constructivism proposes that realities are constructed through lived experiences and interaction with others and that “meanings are derived from perceptions, experiences, and actions in relation to social context.”16 This perspective was deemed appropriate because we wanted to explore and understand labor and delivery experiences of women who developed fistula as expressed by the sufferers themselves without limiting their experiences by predetermined responses as the case with a positivist perspective.17 Malawi is one of the poorest countries in Sub-Saharan Africa, with an estimated population of over 17 million.18 The country is divided into three regions, which are further subdivided into 28 administrative districts. Malawi has three levels of health service delivery: primary, secondary, and tertiary. Primary level facilities offer basic health services and are the entry points for the formal health care delivery system. It includes health centers, dispensaries, and health posts. Staff at this level includes nurse midwife technicians, enrolled nurse midwives, clinical officers (COs), and medical assistants. All these cadres, except for medical assistants, undergo a 3-year similar training program that prepares them to perform as skilled birth attendants (SBAs), to manage normal deliveries, and to refer complications such as obstructed labor; the primary cause of OF. District hospitals constitute the secondary level of health care and provide specialized services to patients referred from the primary health care level, through outpatient and inpatient services and community health services. These services are enhanced by the provision of adequate specialized supportive services, and they have the capacity to provide comprehensive emergency obstetric and neonatal care. Tertiary health care level consists of highly specialized services. At this level, central hospitals and other specialist hospitals provide care for specific disease conditions or specific groups of patients. These facilities are referral centers for the district hospitals and in some cases for rural hospitals, community hospitals, and health centers. These different levels are linked to one another through an elaborate referral system that has been established within the health system. Pregnant women first visit the primary-level facility and are referred to the next level in case of an obstetric complication.19 The common mode of transportation linking the facility levels is ambulance, whose availability and functionality determine how fast the individual – in this case, the pregnant woman – gets to the next level for appropriate care. Our study was limited to the central region of Malawi. Central region has an estimated population of 7 million20 and is subdivided into nine administrative districts. Each district consists of several health centers, which refer to a district hospital. The region is predominantly inhabited by Chewa tribe. Chewa people culturally practice matrilineal system of marriage and are virilocal.21 Due to the virilocal system, issues of pregnancy and childbirth are usually decided upon by mothers-in-law or sisters-in-law and uncles called “mwinimbumba,” regardless of their level of knowledge about childbirth issues. Chewa people are an agriculture-based society,22 and farming is the primary income generator through growing maize and tobacco. This makes them more dependent on rains and, thus, vulnerable to poverty when rains are poor. The majority of people live in the lower wealth quintile compared to the other two regions in the country. The majority of women have no or some primary education; with just a few completing their primary and secondary education. According to Malawi Demographic Health Survey (MDHS) 2016,23 the majority of women (97%) in the region had skilled antenatal care (ANC) in the 5 years prior to the survey, but only 90% had deliveries at a health facility; the rest were outside the health facility, assisted by relatives, neighbor, or traditional birth attendants (TBAs). Women also suffered more stillbirths compared to their counterparts in the south and north. This could be because they also had more challenges in accessing maternal health services compared to their counterparts.23 Malawi failed to achieve the Millennium Development Goal number 5 in 2015, like most low-income countries in Sub-Saharan African region. However, maternal deaths have decreased since the year 2000 from 1,123 per 100,000 live births to 439 per 100,000 live births in 2016.23 Despite the decrease, the rate is still the highest in the Sub-Saharan region. The reduction reflects improved utilization of antenatal and delivery services. The decrease in home deliveries from 43% in 1992 to 7% in 2016 could be attributed to the ban on deliveries by TBAs in 2007.23 Currently, there is only one care center that treats OF, Bwaila Fistula Care Center (BFCC), which is situated in Lilongwe (central region). The center was established by the Freedom from Fistula Foundation in 2010.24 Before 2010, women were managed in tertiary hospitals located in Blantyre and Zomba in the southern region, Lilongwe in the central region, and Mzuzu in the northern region. However, due to shortage of surgeons with technical skills to manage fistula, many women continued to suffer from the condition for very long periods of time.25 Currently, it is estimated that 1.6 per 1,000 women of reproductive age (15–49 years) are living with fistula.9 Anecdotal reports state that 20,000 (~5 per 1,000) women are living with this condition. The MDHS 201623 reports that 1% of 24,562 women (n=246) who participated in the survey had experienced OF between 2010 and 2015. Twenty-eight women diagnosed with OF participated in this study. To participate, the women had to be diagnosed with vesicovaginal fistula or rectovaginal fistula or both, admitted at BFCC, waiting for surgery or recovering from surgery, living within the Center’s catchment area and within the central region, regardless of her age and duration of living with fistula, and willing to participate in the study. Three of the women refused to participate, making the final number of participants 25. Twenty of the women were purposively selected from BFCC, while five were recruited through snowball sampling through those who had been recruited at BFCC. The women recruited through snowball sampling were visited in their homes and invited to participate in the study. Some women had previously been diagnosed with fistula, but had not yet sought treatment at BFCC. Semi-structured interviews,17 which lasted between 30 and 90 minutes, were conducted by the first author. The questions focused on demographic information and historical accounts of the pregnancy that led to fistula development. To increase trustworthiness,17 the first author conducted follow-up interviews with 10 participants in order to clarify, resolve, and confirm issues based on the responses from the participants’ earlier interviews. The interviews were analyzed concurrently with data collection process. All the interviews were transcribed verbatim and translated from Chichewa to English by the first author and three research assistants. Three transcripts were given to a linguistic teacher at a secondary school, with a Bachelor’s degree in Education, to back translate to Chichewa to ensure that the meanings had not been lost in translation, and there were no significant differences. The first author did the final editing by checking all the transcripts against audio recordings to ensure accurate transcription and translation. A transcript was further checked against an audio recording whenever something did not make sense while reading it. The English transcripts were used for analysis, and they were crosschecked with the original Chichewa transcripts to ensure a correct interpretation throughout the process. The process was guided by a thematic analysis approach that was both deductive and inductive in nature.26 Deductively, previous studies and literature provided information on childbirth experiences of women who developed fistula in other countries.6 The three delays model helped determine into which category(-ies) each reported factor had been aligned. In other words, the data were reviewed/analyzed with certain preconceived categories derived from the aforementioned theoretical model while allowing for themes to emerge directly from the data using inductive coding. Inductively, the transcripts were carefully read sentence by sentence to obtain a sense of the content as narrated by the participants and to identify the emerging themes. Phrases and sentences related to labor and delivery experiences were coded in the margin of the transcript sheets, and codes with similar content were combined into categories. Nvivo 10 software was used for data management. Several rounds of discussions among the co-authors were necessary to strengthen the credibility and integrity of the findings.17,49 To ensure confirmability, all the co-authors reflected, discussed differences in the interpretation of data, and agreed on the categorization.17,27,49 The study was conducted in compliance with the principles of the Declaration of Helsinki.28 The study was approved by the College of Medicine Research Ethics Committee (COMREC) in Malawi; protocol number P.03/15/1711; but did not need an explicit permission from the obligation of the Act on medical and health research as stated by the Regional Ethics Committee (REK) in Norway; protocol number 2014/2040/REK, but was registered with the Norwegian Center for Research in Norway (NSD) ref: 43,620. All informants, including one mother under the age of 18 years, gave both oral and written informed consent as approved by the COMREC in Malawi. Participants gave consent for the responses from their interviews to be used in this manuscript. All transcripts were anonymized, and pseudonyms were used in this report to protect the participants’ identities and to ensure confidentiality. Voluntary participation was emphasized. Women were given an equivalent of $2 for transport to the hospital for those recruited through snowball sampling or back to their homes if recruited at the care center. This was done at the end of the interview to avoid undue inducement.28,49 The findings from this study add to the existing knowledge about OF by revisiting the three-delays theoretical framework from the perspective of the women who had survived the condition and can give firsthand accounts of what happened during labor and childbirth. The methods used are described in detail and may be transferable and adapted to settings and populations similar to those of our study. The first author is a nurse midwife, conversant with OF, and she is a local researcher conversant with Malawian culture, which could affect the way data were collected and analyzed. To minimize researcher bias, she had an ongoing discussion with the co-authors during the interview guide development, data collection, data analysis, and manuscript development. Being a Malawian could have forced women to participate to help a fellow Malawian. To minimize this effect, voluntary participation was emphasized. Another limitation is that we could not separate iatrogenic fistula from those exclusively caused by obstructed labor, but whatever the case, most women had an operation after labor was already obstructed implying that the process of fistula formation could already have been underway, and also making cesarean delivery difficult which could have potentially led to iatrogenic fistulas. Some of the interviews were conducted at the health facility where the participants received fistula care, which might have influenced their responses; however, voluntary participation was emphasized, and participants were assured that their care will not be affected by their decision to participate or not. Another limitation is that our population was narrowly defined, and it excluded health care providers and TBAs who also play a role in fistula formation, making it difficult to confirm some of the participants’ accounts.
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