The findings are presented within four broad categories: awareness about fistula onset and causes, awareness about where to access care for fistula, women's care-seeking behavior, and NOFIC providers' insights.
Awareness about Causes and Symptoms of Obstetric Fistula
Women’s perceptions
There was poor knowledge of fistula onset and its causes among women with fistula across northern and southeastern Nigeria. Some women lived with fistula for a long time but did not know what it was or what to do. Women rarely perceived the cause of fistula to be prolonged or obstructed labor the most common cause of obstetric fistula. Instead, patients attributed the onset of urine leakage to consumption of high-sugar carbonated drinks (e.g. “La Casera”), lifting heavy loads, and coughing.
“How it was happening to me then was that when I want to lift heavy chair or laugh, it will come out (urine) or during a cough or when I drink sugary things like mineral or La Casera, my whole cloth will soak.” (FGD, repaired women Ebonyi)
In both locations, some women blamed hospitals (and those attending to them) for causing their fistula following childbirth even in scenarios where they experienced extensive delay and prolonged labor at home before reaching the hospital. In recounting prolonged labor as a factor leading up to the development of their fistula, women often described waiting 48 hours to seek emergency obstetric care.
"This hospital may have caused this thing for me, maybe they did not return something into me properly, I am not thinking of something else in my heart.” (IDI, Repaired woman, Kano)
“My own is that it is my first pregnancy that resulted in the fistula. I had prolonged labor in Imo state, when they wanted to do C/S the baby came out. I labored all through in the hospital and they (hospital) gave me to cut and it resulted to fistula" (FGD, Repaired women, Ebonyi)
Some women reported several unsuccessful surgeries attempts by health providers at private and secondary public facilities before they were referred to the NOFIC. Findings further indicated attribution of childbirth-related procedures to fistula cause. Some women think that when urine catheters are inserted into them during treatment, this leads them to develop a fistula.
“The doctor carried catheter, say two and put inside me, three days later I called a nurse and said remove this thing I will carry my leg and enter the bathroom to ease myself. I said that I won’t have any problem.” (IDI, Repaired Fistula woman, Ebonyi)
Awareness of the causes of the fistula was more common among women who have undergone repairs or other surgeries and who probably were counseled or referred during the treatment.
“My experience is that I was small when women are still being circumcised. I sustained an injury in the bladder. I was taken to FMC when we got there a nurse directed us to come here to NOFIC for specialist care. It was done successfully...” (FGD, repaired women, Ebonyi)
Some women, including those who delivered at home, described their fistula to be caused by witchcraft, saying that their landladies bewitched them, thereby indicating disharmony in the neighborhood.
"Aunty I will say it is the devil because in my case I have lost three children and they were all males, you see the witches that are behind all these just wanted to take my life but God forbid” (IDI, repaired fistula woman, Ebonyi).
These perceptions were also amplified by prophecies advocated by some church leaders who tell female members that they should never deliver children by cesarean section; this leads to women prolonging unattended labor while waiting for normal vaginal delivery.
Awareness about fistula was higher among community married women than men. However, knowledge of the causes of the fistula was quite low. Some women were aware that fistula is a result of problems during delivery, including the mismanagement of labor by uncertified doctors.
"VVF (vesicovaginal fistula) is a problem that woman come across, maybe during and after delivery, maybe for example as I mentioned earlier on that when they take you to all those native doctors…. maybe they have already injured you inside your womb, then after that, you may have such problem…” (FGD community women, Ebonyi)
Some of the women interviewed identified that non-use of antenatal (ANC) services probably contributed to the development of fistula as most women do not go for ANC and husbands do not help their partners to receive appropriate care during pregnancy.
“Some people have this habit, some will say they normally deliver at home, they won’t come to the hospital, you can find that sometimes among the women and sometimes from the men, and they will not bring their wives to the hospital…” (FGD community women, Kano)
Similar to community perspectives, quite a few of the caregivers had never heard about fistula before their relative developed it and sought treatment. Caregivers broadly described being unaware of the onset of fistula and its causes but elaborated on a range of perceived causes, including the physical position of a woman while giving birth and cesarean section.
“…this ailment is when a girl squats to deliver and this delivery is not forthcoming…another case, this labor can cause the womb to press down on the bladder and this is when they get this problem…” (IDI Female Caregiver, Kano)
Men’s perceptions
Men’s lack of awareness of fistula is complicated by the fact that women who are living with fistula do not share their experiences with anyone – families, neighbors, and other community members, - primarily due to shame and lack of confidentiality. Some men also think women avoid seeing doctors avoid having to share their experiences living with fistula.
“Any person who has suffered such ailment, will not like to disclose it to anybody. You know such sickness people will like to hide it because of the condition. For us, there is no way we can know who has suffered from such…” (FGD community men, Ebonyi)
“They (fistula clients) don’t inform their wards or their children. If they have this problem, they should bring it to the hospital” …” (FGD community men, Kano)
Mixed views were reflecting an awareness of the fistula. Some community men knew about fistula only after a relative has experienced it, or after seeing an affected woman. None of the community men correctly identified the causes and symptoms of fistula and knew where to seek treatment. Some men perceived that access to fistula screening and treatment may be limited by geographic locations which also prevents women from accessing quality and emergency obstetric care.
"There is no nearby hospital or PHC, the problem is numerous, where they go to obtain a card (ANC). It is only in Abakaliki, where some women go for antenatal… it is far from this community and also the place of delivery is far” (FGD Community Men, Ebonyi)
Although knowledge about the cause of fistula was generally poor among men, some men thought that fistula could be prevented through timely use of ANC services. Other men shared concerns that women do not access ANC and timely delivery services due to transport challenges. Some men attributed the cause of fistula to the size of the woman's womb which may complicate labor and delivery.
“The problem will occur because there is no mobility for taking the women to the hospital. If labor starts at night, she will visit the TBA for any assistance but in the process, she loses the baby and her life too” (FGD, Community Men, Ebonyi)
“Their womb is not big enough to carry a pregnancy, but God permitted them to be married and get pregnant. But when it is time for delivery, there must be a problem” (FGD, Community Men, Kano).
Caregivers’ perceptions
Although some of the caregivers had never heard about fistula before their relative getting it, others attributed the cause of fistula to holding back urine for a long time.
“Hajia, for us we have never seen it before, we just saw it, nobody has ever suffered it in my community. I swear for me, I have never heard, only on her did I know it” …. (IDI, female caregiver family member, Kano).
“Her own they said that the child stayed long, that is why this thing (fistula) occurred as people tell us. They say the problem is from the doctor. He allowed the girl to suffer long and that was why” (IDI, female caregiver/family member, Ebonyi).
Some caregivers showed a complete lack of awareness about the causes and onset of fistula. Awareness of fistula improved after they accompanied their relatives during fistula repair. Others were still not clear about the causes of fistula even when providing support to a relative, probably because caregivers may not have benefited from counseling sessions preceding repairs.
“I don’t know the meaning of the sickness; it’s just that my sister had the problem after C/S operation. I have seen people that are leaking urine but I don’t know the name of the sickness” (IDI, female caregiver/family member, Ebonyi).
Awareness about where to access care for fistula
Evidence from the FGDs and IDIs among all participants (men, women, and caregivers) showed poor knowledge of where to get care for fistula, which led to inappropriate care-seeking, as well as women living with fistula for many years.
This was also described by caregivers who lacked knowledge of a repair center.
“This thing happened 6 years ago, we didn’t go to any other place until July this year she came and complained that the pain from her private part became more severe” (IDI, Female Caregiver, Ebonyi).
Lack of awareness of where to access care for fistula also led to people traveling long distances to seek treatment.
“The problem disgraces a person. When a person gets that problem, she cannot go amid people. For three months that my sister gets this problem, she cannot go to church, she will stay in the home, be crying all the time. She even went to Abuja for treatment before they referred us to this place.” (IDI, Female caregiver, Ebonyi).
"When I went back and asked one woman that works in the hospital, she said frankly she does not know but she will inquire on our behalf but that she has never heard that it's treated in Kano” (IDI, Female Caregiver, Kano)
Even when women become aware of their condition, they still do not know where to access care except if someone else with experience or knowledge of receiving care refers the patient to a specific facility.
“When I had this problem, I never took it seriously, I thought it was something else until I heard somebody say that another woman had the same problem, she came to the hospital and was attended to and she is well" (IDI, repaired woman, Ebonyi).
Interviews with women indicated that knowledge of where to access care only improved with experience of fistula repair. Before arriving at the NOFIC on referral, many women had sought several alternative sources of care, including prayer houses and other private hospitals; some even resorted to self-medication. Women who had their fistulas repaired were eager to refer community members suffering from the same condition.
“In my community, there is a young lady who is much older than me, she gave birth to her first child and had this problem. This lady isolates herself from the people and stays alone. I have promised myself that once I leave this hospital I will go and look for this lady because she lives very far in the village. I will tell her about this place, even if she will not have children at least let her live a normal and happy life.” (IDI, repaired woman, Ebonyi).
“It was in the night that I told him, he had to call a doctor who asked me to come to be examined after which the doctor said frankly this urination should be referred to the hospital” (IDI, Repaired Fistula Patient, Kano)
Some community men, women, and caregivers did know where treatment for fistula could be accessed, though since it is less socially normative for women whose fistulas were repaired to not disclose their experience and care-seeking pathway, overall awareness remains low. This problem is compounded in some areas by the belief that fistula is evil imposed on them either by the gods or their neighbors.
“Some don’t know, it’s even people that let me say from an urban area that would just explain to them that; this kind sickness, you go to the hospital and you will be cured. They go to the chemist and buy small drugs, if they give it to that person maybe they will say it’s somebody that is doing this to them.” (FGD community women, Ebonyi).
Caregivers perceived that awareness must be created widely - nationwide - given that many people may not aware of the NOFICs in geopolitical zones.
I think lack of sensitization is the major one because so many people are not aware of this place especially the Aba area. I have never heard of this place and never knew this kind of place exists and I know it's like that for most people” (IDI, female caregiver, Ebonyi).
“At home, my colleagues that live there call constantly on the phone that it is announced on the radio, that they do the operation here, that it is announced always on the radio” (IDI Repaired Fistula Patient, Kano).
Care seeking behavior
Home delivery was common in both regions; some of the women with fistula had most of their babies at home or on the way to the hospital without any skilled care or even the help of an experienced neighbor. Women found it difficult to accept the consequences of their care-seeking behaviors that may have led to the development of fistula. While some women blame their health providers, others suspected neighbors and other relatives of evil thoughts. In some cases, women had up to eight deliveries at home and this trend was consistent in all locations.
"It is the devil because you see those my eight pregnancies, nobody assisted me during delivery once I feel labor, I will just go to the backyard and take a warm shower and before the next 20-30mins the baby will be out” (IDI repaired woman, Ebonyi)
"From the beginning when she went into labor, she spent two days and they did not inform me. It was in the morning of the second day that they came to tell me. When I was told in the morning, I went there, she was in it, so I said she should be taken to the hospital, they said they wanted to deliver at home” (IDI repaired woman, Kano).
However, patients’ reported experiences at private secondary facilities indicate that there is also a gross lack of awareness on how to manage fistula among providers outside the NOFICs. This might be linked to why there were reportedly several attempts of 'trial and error' to repair women of their fistula with failed attempts as well as not correctly defining the causal root of the fistula to patients.
“According to the doctor, he invited me to explain it to me. He asked me how old I was when I got married which I told him, so he said it was as a result of early marriage and early sex. He also asked me how I had my first sex and I told him that it was my husband that de-virgin me and he now said that it was early marriage because that was at 17 years". (FGD Repaired woman Ebonyi).
NOFIC providers’ insights
At NOFICs, women are managed by a range of professionals who are obstetrics and gynecology specialists. Providers at the fistula centers were interviewed to understand their views about treating women with fistula. Responses show high levels of knowledge of how to repair a fistula. Providers at NOFIC were aware that women seek care at different lower-level facilities or where there are no skilled providers trained in fistula repair. Many women had undergone several repair attempts by untrained or inexperienced providers before presenting to the NOFIC. Inexperienced providers may also actually complicate the woman’s fistula condition.
"Yea, most of them visit various places and eventually come down with a mutilated kind of fistula and that's equally difficult. It was not is just that they (providers at other facilities) don't have the very important knowledge. Apart from being a medical doctor, you need to undergo training for this type of surgery, it is not just surgery you go and read on text book and come and practice, you have to see it done” ….(Fistula Surgeon, Ebonyi).
“Yes, you see being an Obgyn does not make a fistula surgeon. That has to be understood” (Fistula Surgeon, Kano)
Medical social workers at NOFIC counsel the patients on arrival and admission before bookings. There seems to be appropriate patient counseling and education.
"So maybe out of fear of exposure, they may not adhere to medical instructions. They come in at that point and help them relax and be able to accept instructions…” (IDI Medical Social Workers, Ebonyi)
“The first person to be in contact with, she will come here, and I will give the lecture. The lecture enlightens them about all they need to know about fistula and the reason of having fistula, why it occurs and how they come about it and how they find their way down to the hospital the source that gave them the information" (Theatre Nurse, Kano)
NOFIC providers feel that women delay for years because of a lack of awareness of where to find treatment.
“I think most patients don’t present early because of the awareness. Some come with a long history of leakage over several years. (Fistula Surgeon, Ebonyi).
NOFIC providers expressed surprise that, despite their community mobilization efforts to increase awareness for fistula care services available in the area, community men and women still report poor awareness of the availability of fistula services. Providers report that they have conducted meetings at churches, and women’s groups, house-to-house, and market outreaches in selected communities. Providers also reported that awareness creation strategies and sources of information differed across locations. Media announcements e.g. radio was stronger in northern Nigeria (Kano) than in the southeast (Ebonyi) which was predominantly through interpersonal communication.
Providers believe that several women with fistula are still “hidden” and their family members do not know that treatment is available.
“I remember last year… I led a team I combed the whole of Nsukka in Enugu state, I moved from market to market from church to church, met with community leaders. We moved from house to house for sensitization (Fistula Surgeon, Ebonyi).
Some of them say: “we heard it from the radio and friends”. They are calling people with fistula to come to the hospital for repairs and so on. Some of them will say they heard it from their friend” (Pre-operative Nurse, Kano)