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By Machuor Daniel Arok, Joseph Atem Dut, Apin Deng Aher and Lual Lual Ashor

ABSTRACT

This study was undertaken with the overall goal to increase knowledge and understanding among stakeholders on the prevalence of obstetric fistula, including existing gaps in preventing and treating obstetric fistula in South Sudan.

“Obstetric fistula occurs as a result of a prolonged and obstructed labour. The pressure caused by the obstructed labour damages the tissue of the internal passages of the bladder and/ or rectum and with no access to surgical intervention, the woman can be left permanently incontinent, unable to hold urine or faeces, which leak out through her vagina”[24].

The study was conducted between April 1^st and June 30^th 2014, backed by a kiva review. It was a retrospective cross-sectional study, both qualitative and quantitative in nature.

Data was collected from theatre records and admission sheets for a total of 126 patients admitted with obstetric fistula between the years 2009 to 2013 in the three regional fistula referral hospitals of Juba, Wau and Rumbek, to establish the characteristics of women and obstetric factors at causal delivery. 47 patients were from Juba Teaching Hospital, 41 from Wau and 38 from Rumbek States Hospitals. Two (2) surgeons from the Department of Obstetrics and Gynaecology got trained from Addis Ababa, Ethiopia and are currently involved in management of obstetric fistula, including six (6) midwives and nurses were also interviewed using Form 2 to find out their level of skilled training, performance and handicaps in the management of obstetric fistula. The same surgeons were also involved in the management of obstetric fistula during ‘fistula camps’ in the other referral hospitals of Wau and Rumbek.

The prevalence of fistula could not be estimated in this study because of its limited scope to Regional Referral Hospitals, lack of sufficient data on obstetric fistula and the fact that very minimal activities were taking place in these hospitals. Because nothing or little is currently done for obstetric fistula patients they tend to keep away from the hospitals and stay in the communities where it is difficult to identify them except on rare occasions of “obstetric fistula camps”.

INTRODUCTION

Background

Obstetric fistula (fistula from here on) is an “abnormal opening between a woman’s vagina and bladder and/or rectum, through which her urine and/or faeces continually leak” [1]. Fistulae are generally caused by long obstructed labours. Such labours can last for days and in most cases the baby dies [2,3]. During an obstructed labour, the baby’s head becomes lodged in the pelvis and the pressure from the head can cut off the blood flow to the surrounding tissues causing them to necrotize and form a hole. Surgical repair of fistula is possible even if the fistula has been present for some time [1]. Closure rates of 85-95% for those operated on have been reported in a number of case series [4]. However, it is unclear how many women are considered “inoperable” before an operation is attempted.

The potential consequences for women who suffer from fistula are social, emotional and physical [3]. The woman may have sores on her genitals due to urine dermatitis, be unable to have sex, and stop or have irregular periods [4]. These factors, and the associated smell, may lead to social problems, loss of ability to work and estrangement from spouses, family and society [4]. There is also limited evidence of an increased risk of depression [5]. The time and resources required by women to keep clean has also been found to have a major impact on women’s lives [6].

Fistulae are thought to be relatively rare globally, with most cases originating in low income countries in women lacking access to intrapartum care [2]. The WHO estimates two million women have fistula globally [1], but do not state their reliable sources. There are few reliable prevalence estimates because of fistula’s rarity and the remoteness of the areas where sufferers tend to live. Most studies stating a prevalence of fistula are based on self reports, personal communications with surgeons and studies from advocacy groups or reviews of hospital services without denominators [7]. A commonly cited statistic, that fistula occurs in 200–500 per 100,000 deliveries, originates from a personal communication with a fistula surgeon working in East Africa [8]. Incidence in the MOMA study [9] of eight centres in six countries in West Africa is 10 per 100,000 pregnancies overall (denominator 19,342 pregnancies) and 120 in rural areas (denominator 1,543 pregnancies). Community-based prevalence estimates from Gambia [10] are 96 per 100,000 women of reproductive age (denominator 1038 women) and from Ethiopia [11] (treated and untreated) are 203 per 100,000 women of reproductive age (denominator 27,090 women). Hospital-based prevalence from rural hospitals in West Kenya of obstetric fistula is 1 per 1000 women [23].

We did not find satisfying estimates for South Sudan or for Sudan before separation. However, from 2009 to 2012, about 150 women have been repaired with obstetric fistula and 120 others have been on the waiting list for obstetric fistula operations in the three regional fistula referral hospitals of Wau , Rumbek and Juba and the report showed that obstetric fistula is a rare though dangerous medical condition in South Sudan[12]  . Despite the above reports, the authors of this study believe that more in-depth research is needed to determine the magnitude and severity of obstetric fistula and the characteristics of women at reproductive aged 15-49 years to ascertain the risk factors underlying this morbidity and the level of obstetric care afforded to the women in South Sudan.

Statement of the problem

Following 50 years of war, South Sudan became independent in July 2011. Its population is 8.26 million [13] and is one of the world’s least developed countries. A recent report found 33 functioning hospitals in the whole country, with only 16% of all health facilities having electricity [14]. It is estimated that there is only one doctor per 100,000 people in South Sudan; substantially lower than the 20 per 100,000 recommended by WHO [15]. South Sudan reports some of the worst health statistics in the world, with an Infant Mortality Rate of 102 per 1000 live births and a Maternal Mortality Ratio of 2054 per 100,000 live births [13]. Only 19% of women are estimated to give birth with a skilled birth attendant, 12% to give birth in health facilities, and 13% to use antenatal care [16]. From the onset of the recent crisis of December 2013 in the country, Juba Teaching Hospital, Rumbek and Wau Hospitals have been the only main referral hospitals providing health services to patients from severely affected states of Jonglei, Upper Nile and Unity. This means that previously inadequate health services in these three regional referral hospitals have been severely strained, including the most delicate maternal care services. For these reasons, South Sudanese women currently accessing  health services in Juba Teaching Hospital, Wau and Rumbek Hospitals which are the three regional fistula referral hospitals are considered to be at high risk for obstetric morbidities, including fistula.

1.2. Significance of the Study to Public Health

Prevalence data on obstetric fistula are not available for most settings in the developing world including South Sudan. The magnitude and severity of the problem on available resources has an impact on policy hence the need for awareness of obstetric fistula as a problem. This study is designed to get information on how severe the obstetric fistula is in the developing world and particularly to inform response strategies to reduce obstetric fistula emergencies in South Sudan.

1.3. Hypothesis

The socio-demographic characteristics of women admitted such as early marriage and lack of mother education; lack of access to antenatal services compounded by inadequate capacity in preventing and treating obstetric fistula could all explain the burden created by this morbidity among women aged 15-49 years in South Sudan.

LITERATURE REVIEW

Obstetric fistula is a health condition caused by interplay of numerous physical factors and the social, cultural, political and economic situation of women. This interplay determines the status of women, their health, nutrition, fertility, behaviour and susceptibility to fistula [17]. The physical factors that influence the incidence of obstetric fistula include obstructed labour, accidental surgery, injury related to pregnancy and crude attempts at induced abortion.  Traditional surgical procedures that lead to obstetric fistula are commonly employed during pregnancy and labour, and lead not only to obstetric fistula, but also cause haemorrhage and sepsis. These include female genital mutilation (FGM) and Gishiri cut (practised in Nigeria) [17, 18]. Socio-cultural factors contribute to the prevalence of obstetric fistula in women e.g. early marriage, health seeking behaviour and availability and utilization of essential obstetric care. Illiteracy is also a major factor which determines what kind of medical help is sought. It deters people from attending hospitals particularly when they are made to feel stupid and when hospital staff are from an alien culture with differing traditions, custom and language [19]. Education gives young women better access to profitable employment. It also reduces the incidence of high-risk pregnancies and unwanted pregnancies and this may reduce the incidences of obstetric fistula [17].
Women with obstetric fistula suffer from urinary incontinence which if not properly managed cause them to smell of urine. This continuous urine leakage makes them vulnerable to urinary tract infection, vaginitis and excoriation of the vulva, vaginal stenosis, secondary amenorrhea, possible future inability to carry a child even after repair of fistula. A low child survival rate has been shown to be related to obstetric fistula [20, 21].
Obstetric fistulas are repaired through orthodox surgical correction, a successful repair is gauged by whether the woman is continent of urine and the operation could be by vaginal, transperitoneal or transvesical approach. Repairs are generally successful, depending on the extent of damage and duration of condition [22].

OBJECTIVES

2.1. Main objective

To estimate the prevalence rate of obstetric fistula among women at reproductive age 15-49 years in three Regional Hospitals from 2009 – 2013, in the Republic of South Sudan

2.3. Specific objectives

• To determine the socio-demographic characteristics of women admitted with obstetric fistula
• To determine the obstetric factors at causal delivery of women admitted with obstetric fistula
• To assess the gaps in preventing and treating obstetric fistula in South Sudan.

METHODODLOGY

This was a retrograde descriptive study that was carried out in Juba, Wau and Rumbek regional fistula referral hospitals, South Sudan, covering the period from January 2009 to December 2013.  The total number of obstetric fistula patients over this 5-year period reached by this study was 126 patients. Out of these, 47 patients were from Juba Teaching Hospital, 41 patients from Wau and 38 patients from Rumbek Hospitals. The data for these operated patients was obtained from Theatre Records and Admission Sheets of the Hospitals and was collected using a data collection sheet designed specifically for this study. The main information collected from the Theatre Records and Hospital Admission Sheets was the socio-demographic characteristics of patients admitted and the obstetric factors at causal delivery of these patients operated with fistula. The records were confirmed with reports of previous fistula operations in the three hospitals and with health facility questionnaires which were completed by Obstetric Fistula Surgeons, the theatre assistants, nurses, and midwives who have been involved in the Fistula operations over this 5-year period. The main target of these heath facility questionnaires was to assess the capacity of health facility in managing the obstetric fistula cases particularly in 2013. All fistula cases reported as a result of obstetric problems seen in these three Regional Fistula Referral Hospitals from January 2009 to December 2013 were analyzed. Other types of fistula other than obstetric were excluded.  The completed data collection sheets containing socio-demographic factors of patients, their obstetric factors at causal delivery and the capacity of health facility in managing the obstetric fistula cases were then analyzed by the investigators, particularly for the 126 targeted number of those patients who had been seen, diagnosed and treated for obstetric fistulae in the other three fistula referral hospitals of Juba, Wau and Rumbek. All these completed data collection sheets were then verified and coded for computer analysis using excel sheet. The analysis was finally made by frequency table cross tabulations.

RESULTS

 

• Socio-demographic Characteristics of Women admitted with Obstetric Fistula in the three Hospitals of Juba, Wau and Rumbek from 2009-2013: Please see table 1 for data results.

 

• Age distribution

Of the 106 women operated with obstetric fistula, 19 (17.9%) had fistula when they were below 15 years, while about 51 (48.1%) of them experienced the condition at the age of 16-20. In total, about 70(66%) were below the age of 20 years, indicating that obstetric fistula is associated with early marriage/pregnancy. The records also show that those who were above 31 years had lived with the disease for at least 10 years on average, an indicator of the degree of neglect or inaccessible services. There should be introduced programmes that target delay of pregnancy and sexuality among adolescent girls (advocacy against early marriages).

 

• Marital Status

For this study, 92 (73 %) of women operated with fistula were in stable marriage. However, 18 (14.3%) of them were either separated or divorced. This shows that instability in marriage or spouse relationship is not uncommon among women with fistula.

• Parity distribution

The majority 32(41%) sustained the fistula in their first pregnancy. Although mothers gain false confidence after the 3rd delivery that nothing can go wrong, 18(23.1%) of the women had more than 5 deliveries. Among the multiparous women, obstructed labour frequently results in ruptured uterus other than obstetric fistula.

• Educational Standard

Only 1(2.8%) woman reached secondary level and there is no single woman that had gone beyond secondary or tertiary level of education, indicating low educational and socioeconomic status. Programmes aimed at promoting education of the girl child and increased economic empowerment of women will result to better childbirth outcome.

• Height in cm/stature

Of the 14 women with fistula whose heights were recorded, 10(71.4%) women had their heights ranging from 150-160 cm, showing that obstetric fistula is also associated with short stature.

• Nature of residence

Of the 40 women with obstetric fistula whose nature of residence were recorded, 26(65%) came from rural areas, an indication that obstetric fistula has a strong correlation with rural settings because of lack of access to health services and high rate of illiteracy.

 

Table 1: Socio-demographic characteristics of women admitted with OF in three referral hospitals of Juba, Wau and Rumbek, South Sudan from 2009 to 2013 Age Distribution   <15 16-20 21-30 >30             Age at causal delivery ≤15 16-20 21-30 ≥31 Number/prevalence 19(17.9%) 51(48.1%) 30(28.3%) 6(5.7%) Marital Status       Status Married Separated/divorced Single Widows Number/prevalence 92(73.0%) 18(14.3%) 11(8.7%) 5(4.0%) Parity distribution       Parity Primigravida Para 2-4 Para≥5 Number/prevalence 32(41.0%) 28(35.9%) 18(23.1%) Educational standard       Education level None Primary Secondary Tertiary Number/prevalence 35(97.2%) 0(0%) 1(2.8%) 0(0%) Height in cm     Statue ≤150 cm 150-160 cm ≥160 cm Number/prevalence 0 (0%) 10(71.4%) 4(28.6%) Nature of Residence     Residence Urban Rural Number/prevalence 14(35%) 26(65%)

 

• Obstetric Factors at causal delivery of women admitted with obstetric fistula in the three referral Hospitals of Juba, Wau and Rumbek from 2009-2013
  • Place of Delivery

Of the 62 women with obstetric fistula whose places of causal delivery were recorded, 30 (48.4%) delivered at home while 32(51.6%) delivered in the health facility. The high numbers at home deliveries are related to rural residence, while the relatively high number at health facility deliveries are due to poor maternal care services. Improved maternal care services both at urban and rural areas enhanced with improved access to health services and awareness in rural areas will improve better childbirth outcome.

• Mode of Delivery

About 32(54.1%) of women with fistula had spontaneous vaginal delivery while 25(41%) were delivered by Caesarean Section. The high cases of fistula occurring as a result of spontaneous vaginal delivery are either due to delays on the way to the health facility or any of the above socio-cultural factors, while the moderately high operative (caesarean 41%) rate among these women is indicative of obstructed labour which can only be relieved by operative intervention regardless of the status of the baby, particularly in unskilled hands for destructive operation in case of a dead foetus.

• Duration of Labour

The majority of women, about 16 (80%) whose durations of labour were recorded had labour lasting more than 24 hours well beyond normal labour duration. This may be attributed to small maternal age, short stature, Primigravida, low maternal weight and haemoglobin level at causal delivery.

• Condition of Baby at Delivery

All the women laboured for more than 12 hours up to even more than 48 hours. The mother and the baby are worn out by the labour process. Commonly the baby succumbs to the stress of labour and dies before delivery (80%).

• Anticipation of Complication of Delivery

A good proportion of women who reached the health facility with an already prolonged labour duration were examined by a trained midwife and there was prediction of possible difficulty in delivery in 23 (62.2%) women who were then advised to be delivered by C/S in hospital or referred as appropriate, perhaps to rescue the life of the mother, even if the foetal outcome may be poor because of prolonged labour stress. However, 14 (37.8%) of women that did not access health facility showed no anticipation of complication in delivery. Therefore, health facility delivery should be mandatory regardless of normal antenatal course of any pregnant woman in order to avoid unprecedented complications during labour.

• Antenatal Clinic Attendance

All most all the women 17(85%) who had obstetric fistula did not attend antenatal clinic, most likely due to lack of mother education on importance of antenatal  visits or lack of access to antenatal care services.

• Duration of leakage of urine/faeces

Out of the 43 women whose duration of leakage of urine/faeces were recorded, more than half of the women, 43 (62.3%) had been leaking urine or faeces for more than one year, even some over 20 years. This again confirms lack of public awareness on this neglected maternal morbidity and subsequent failure to access appropriate treatment.

 

Table 2: Obstetric factors at causal delivery for women admitted with OF in three referral hospitals of Juba, Wau and Rumbek, South Sudan from 2009 to 2013 Place of Delivery Place Home Health facility TBA on the Way Number/prevalence 30(48.4%) 32(51.6%) 0(0%) 0(0%) Mode of Delivery Mode C/S Spontaneous vaginal Assisted vaginal Number/prevalence 25(41.0%) 33(54.1%) 3(4.9%) Duration of labour Time ≤6 hrs 7-12 hrs 13-24 hrs ≥24 hrs Number/prevalence 1(5.0%) 0(0%) 3(15.0%) 16(80.0%) Condition of baby at delivery Outcome Stillborn Alive Number/prevalence 16(80%) 4(20%) Anticipation of complication of delivery Anticipated Yes No Number/prevalence 23(62.2%) 14(37.8%) ANC Clinic Attendance Attendance Attended Not attended Number/prevalence 3(15%) 17(85%) Duration of leakage of urine/faeces Duration ≤3 months 3-12 month 1-5 years ≥6 years Number/prevalence 12(17.4%) 14(20.3%) 26(37.7%) 17(24.6%)

• Health service providers’ capacity in managing Obstetric Fistula in the three referral hospitals of Juba, Wau and Rumbek in 2013:

Only 3 doctors countrywide who were currently involved in management of fistula preoperative preparation ranging from performing and assisting at the operation and postoperative care and counselling, were interviewed. As shown in Table 3 below, they all responded affirmatively that they were involved in hands-on (practical) management of fistula. Also 6 nurses and midwives (from Juba Teaching Hospital only) have been trained on the postoperative nursing care and were currently involved in care of fistula patients were interviewed . However those participating in the prenatal and intra natal care of mothers, who may in any case participate in prevention of fistula, were excluded from the study.

• Special Hands-on Training in Obstetric Fistula Management

Only 3 doctors, both Gynaecologist and Surgeons admitted having been specifically trained through a designed obstetric fistula training curriculum in a recognized training centre in Addis Ababa, Ethiopia. The rest of the service providers are not trained and expressed a desire to be trained. About 6 Nurses and Midwives were randomly deployed in Juba Teaching Hospital, even when specially trained on obstetric fistula postoperative nursing care. However, only 2 doctors and 2 midwives/nurses participated in the health provider’s assessment, especially all from Juba Teaching Hospital.

• Distribution of Categories of Service

Responses were obtained for more than one function by a single respondent. However, it is important to note that there are a few providers in and advocacy services (11.1%).

• Adequacy of Training

Both the Pre-service training and in-service training were not adequate. Inadequacy of trainings rated at 100 % and 60% for pre-service and in-service trainings respectively. The pre-service training for both doctors and nurses/midwives in Addis Ababa lasted for only 6 months. South Sudan has not developed any Policy, Training Curriculum or National Guidelines for Management of Obstetric Fistula.

• Needs for Hands-on Training

All respondents (100%) expressed a desire for instructed teaching on fistula management. Even those who had received formal instruction on fistula management were of similar feeling because some of them were not in constant practice while others had not performed a single case operation in the last one year.

• Reasons for Non-treatment of Fistula

More than half (60%) of respondents quoted irreparable cases of fistula was as a contributing factor to non-treatment of some patients and they attributed this to lack of skills among the surgeons to manage some complicated degree of perineal damage caused by prolonged labour. However, lack of equipment was a hidden factor which probably crisscrossed because theatre facility availability and equipment was only mentioned by one person. Treatment of obstetric fistula in South Sudan is free of charge and no question was asked by this study pertaining to the cost of treatment.

• Presence of Trained Nurses and Midwives

In Juba Teaching Hospital which was easily accessible for this study, there were only 4 nurses/midwives trained on postoperative nursing of obstetric fistula patients. However, their work schedules were non-specific and could be deployed generally in any discipline because of shortage of manpower.

• Presence of Special Fistula Equipment

The surgeons in Juba Teaching Hospital mentioned that special fistula repair kits were not a big gap, since the Development Partners such as UNFPA that have been funding the Fistula Camps supplied the equipment. However, they noted that with increasing operative needs, the available equipments may not be enough.

• Accessory Investigations

Apart from basic investigations for a patient going for surgery, there is at times need to perform specialised investigations which were also requested for. However, although these are supposed to be free of charge in public hospitals most often, they lacked reagents and consumables and patients had to be referred to private clinics where the investigations are available at a cost.

• Interventions in fistula prevention

No fistula should occur in a hospital because all facilities of quality obstetric care are supposed to be available. However, in this study, 50% of cases occurred in the hospital and this is attributed to inadequate skills of midwives/nurses on ANC postpartum care.

At health centre level, the main stay of prevention of fistula will be early detection of prolonged obstructed labour and prompt referral to hospital. Even a normal presentation in antenatal care period may change position to become obstructed during labour and similar to above, this has equally contributed to 50% of cases found in this study.

• Family and community perception of contributing factors

On average (33.3%) respondents realized the importance of good childhood nutrition in development or the effect of early marriage (33.3%) in association with early pregnancy and childbirth. However, emphasis was also made on community education (22.2%) and importance of health facility delivery with complications of prolonged or delayed delivery and the consequences. The role of involving and specifically addressing men should be highlighted where men can be educated and sensitized on their roles and responsibilities in the care of pregnant women and their babies.

• Role of National Government

Many respondents felt it was the responsibility of national government to provide funds for supplies, drugs and equipment as well as staff training and motivation. Policy guidelines should be put in place to direct community education and mobilisation and disseminated to reach rural areas.

• Presence of protocols or guidelines on management of fistula

Only Juba Teaching Hospital mentioned that they have some guidelines customized from Training Curriculum in Addis Ababa on management of fistula post operatively. However, there is no National Guidelines so far developed by the Ministry of Health on management of fistula.

• Educational activities to increase awareness

There were no activities to increase awareness either to the public or among professionals.

• Visiting Surgeons

There were 3 visiting surgeons that came from Uganda, Ethiopia and Tanzania who assist in fistula operations when ‘Obstetric Fistula Camps’ have been scheduled.

 

Table 3: Health Service Providers’ Capacity in Managing OF in the three referral hospitals of Juba, Wau and Rumbek, South Sudan in 2013
Special hands-on training in OF management
	Personnel	Trained	Not trained
	Number/prevalence	4 (100%)	0(0%)
Distribution of categories of service
	Category	Surgery	Nursing PO	Prevention PO	Advocacy/IEC
	Number/prevalence	2(22.2%)	3(33.3%)	3(33.3%)	1(11.1%)
Adequacy of Training
	Category	Pre-service adequate	Pre-service Not adequate	In-service adequate	In-service not adequate
	Number/prevalence	0(0%)	4(100%)	2(40%)	3(60%)
Needs for hands-on training
	Training	Needed	Not needed
	Number/prevalence	3(100%)	0(0%)
Reasons for Non-treatment of fistulae
	Reason	Skills	Equipment/space	Costs	Irreparable
	Number/prevalence	1(20%)	1(20%)	0(0%)	3(60%)
Presence of trained Nurses and Midwives
	Presence	Yes	No
	Number/prevalence	4 (100%)	0(0%)
Presence of special fistula equipments
	Equipment	Yes	No
	Number/prevalence	4(100%)	0(0%)
Accessory Investigations
	Available	Yes	No
	Number/prevalence	4(100%)	0(0%)
Intervention in fistulae prevention
	Facility level	Hospital	Health centre
	Number/prevalence	3(50%)	3(50%)
Family and community perception of contributing factors
	Intervention	Nutrition	Early marriage	Skilled attendance	Health education
	Number/prevalence	3(33.3%)	3(33.3%)	3(33.3%)	2(22.2%)
Role of Central Government
	Response	Community awareness	Policy formulation	Supplies & Equipment	Training & Motivation
	Number/prevalence	4(25%)	4(25%)	4(25%)	4(25%)
Presence Guidelines
	Present	Yes	No
	Number/prevalence	3(75%)	1(25%)
Presence of Education activities to increase awareness
	Present	Yes	No
	Number/prevalence	0(0%)	3(100%)
Visiting surgeons
	Present	Yes	No
	Number/prevalence	3(75%)	1(25%)
	From Where	Ethiopia, Tanzania, Uganda

 

KEY FINDINGS:

 

Policy

There is no National Policy Guidelines and Service Standards for Reproductive Health Services in South Sudan aimed at defining a specific direction for fistula management and this shows a significant gap in maternal health services delivery in the country.

 

Prevalence of Obstetric Fistula

It was difficult to estimate the exact numbers and the prevalence of fistulae reported to the three regional fistula referral hospitals within the  last 5 year-period (2009-2013) because of absent or/and inaccurate records. Many patients preferred to remain in the communities because they received little or no assistance at health facilities yet many others could not be operated because their degree of damage was more complicated beyond repair, given the limited skills of obstetric surgeons on fistula.

Characteristics of Patients with Fistula

These were young girls of average age of 18 years with low educational standards and poor socio-economic background which compromised their access to health care. 

Provider Skills for Managing Fistula

There is not enough trained manpower to manage fistula in the health facilities in South Sudan. The majority of work was done by people who have acquired experience on the job through discovery and, self-instruction or volunteers from abroad. This does not guarantee quality service for obstetric fistula patients.

Poor Access and Utility of Services

Many patients with fistula do not seek hospital treatment until treatment with traditional medicine has failed. This could be due to little confidence communities have in the health services.

Community Awareness and Involvement in Fistula Care

Most community settings, individuals or groups do not know the major cause of fistula, its prevention, impact and available remedy. They associate leakage of urine with witchcraft and sexually transmitted infections. They resent and reject individuals with fistula who end up stigmatized and segregated from families and communities.

Attitudes of Health Care Providers towards Fistula Patients

The majority of service providers feel sympathetic to the fistula patient but are handicapped in terms of skills, facilities and financial support, to assist the patients. An average number of cases of obstetric fistulae occur within the health facilities, rather many of the patients arrive at health facilities when they have already sustained the injuries. However, many health care providers lack interpersonal communication skills to interact with patients.

Medical Schools Training Curriculum

All training curricula for doctors, nurses, and midwives at pre-services or in-service levels lacked competence based provision for hands-on-training in fistula management.

Financial Support to Obstetric Fistula Programmes

There was no evidence of specific financial allocation for obstetric fistula activities from National, State Governments or Development Partners except for adhoc arrangements by individual hospitals and doctors where Fistula camps are open on availability of adhoc funds.

Health Management Information System

There is no systematic information gathering about fistula in South Sudan. Therefore, it is difficult to exactly ascertain the prevalence of fistula problem in South Sudan. However, the

“Obstetric Fistula Camps’’ program with minimal community mobilization yield good results in patient turn up, indicating that there are many more cases in the communities. Since the majority of deliveries take place at home, it is incumbent that the information obtainable from gynaecological attendance and operation theatre registers is not representative of the situation on ground.

Potential for Collaboration, Coordination and Research

The Ministry of Health, development partners and women rights activists have realised the health and social consequences of obstetric fistula and are on the track to address them. Currently UNFPA is taking the lead and this study is the second to reinforce such initiatives after the 2013 study by Alma J Alder, Samantha Fox, Oona MR Campbell and Hannah Kuper on Obstetric fistula in Southern Sudan: Situational analysis and Key Informant Method to estimate prevalence; BMC pregnancy and childbirth 2013.

Advocacy and IEC

Advocacy/IEC activities at community, state and national levels were weak and need strengthening. Although the national government has devolved powers and services to the state government, the Ministry of Health has the responsibilities of issuing policies and guidelines to the states and counties. Both national and state governments are not sensitized about causes, prevention and impact of fistula to allow them to adequately budget and finance fistula activities.

DISCUSSIONs

Obstetric fistula is a health condition caused by the interplay of numerous physical factors and the social, cultural, political and economic situation of women. This interplay determines the status of women, their health, nutrition, fertility, behaviour and susceptibility to obstetric fistula [25, 26, 27].  It is important to recognize that this study and most studies are largely hospital based and therefore cannot be fully indicative of the magnitude of the problem. Current reliable data on the prevalence of obstetric fistula is scarce. In 1989, WHO estimated that more than 2 million girls and women around the world had this condition, with an additional 50,000 to 100,000 new cases occurring each year. These figures are based on women seeking treatment, and are therefore likely to be gross underestimates [25, 26, 27].   In some countries the incidence is up to 350 per 100,000 live births, with a backlog of untreated cases close to 1 million in northern Nigeria alone. In situations where there is no functioning obstetric unit, the incidence rate can be calculated at a minimum of 1-2 per 1000 deliveries where the mother survives [27, 28, 29, 30]. The most common cause of obstetric fistula is obstructed labour (85%) following prolonged labor, which is made worse more likely by malnutrition leading to the stunting of the pelvis.

Early marriage, poverty and women’s limited control over the use of family resources increase a woman’s risk of fistula [31, 32]. We found that 17.9% were below 15 years and 66% patients were less than 20 years at the time of occurrence of fistula.
The data from one month at the Kenyatta National Hospital found that 26.6% of women were 20 years and below and 81.3% were 30 years and below. In Africa, where the problem appears to be most prevalent, studies have shown that at least 70% of women with fistulae are 30 years and under[33,34]
Tahzib’s study showed that 5.5% of VVF sufferers were under 13 years of age. He also found out that 33% of patients who attended Ahmadu Bello University Hospital, Nigeria between 1969 and 1990 were aged 16 years and under and 83% were less than 30 years of age [32].
Other studies in Africa have shown that 58-80% of women with obstetric fistulae are under the age of 20, with the youngest patient only 12 or 13 years of age. Waaldijk, working in Northern Nigeria found that 73% of the patients he saw between 1984 and 1988 were under the age of 21 [25,35].
A study of the patients at the fistula centres in Kano and Katsina, Nigeria, showed that most of them (70%) were at the age of 20 when the fistula happened and around 40% were under the age of 16 [33,35,36].
The age distribution at Kenyatta National Hospital (KNH) in 1982 showed a peak incidence for women aged 20-40 years, with Primigravida accounting for 42% of the cases. In Asia, a greater concentration of women with obstetric fistula fell within the 20-24 year age group (except in Bangladesh, where almost half were under 20 years). This suggests that the age of marriage in Asia is generally higher than it is in Africa.

Another finding of these case studies is that women often develop obstetric fistula during their first pregnancy. We found that 41% of women admitted were primigravidae. A similar study in KNH in 1984 reported that 36.6% of the patients were primigravidae and they constituted the single largest group of patients who developed obstetric fistula [29,37,38].
There is a prolonged lag time between onset of fistula and first hospital visit. This shows that the availability of centres for fistula repair is limited or the patients are not aware of existence of the facilities. They may be afraid to use the facilities because of stigmatization. Modern health care is neither acceptable to most obstetric fistula patients nor available to those with the condition. The reason for the delay to seek earlier care could be because most of fistula patients are ostracized by relatives and divorced by their husbands [30,32,39,40].
Illiteracy is a factor which determines what kind of medical help is sought. We found that 97.2% of women admitted did not attend school. Illiteracy deters people from attending hospitals. Education gives young women better access to profitable employment alternatives. It also reduces the incidence of high risk pregnancies, and abortions by increasing contraceptive use and reducing fertility. As girls stay in school longer, the average age at marriage tends to rise, as does the average age at first birth [27]
Hospital deliveries occur, but late and when tissue damage has taken place. This could be attributed to reluctance to accept hospital maternity services in time. For example, if labour becomes obstructed and all local methods fail, a woman may be taken to hospital only if consent is given by her husband, the village chief, or sometimes her mother in-law [29].
In East Africa, the maternal mortality rate is estimated at 750-­820 per 100,000 births and fewer than 15% of these women had received antenatal care (21), compared to the maternal mortality rate in South Sudan  which is estimated at 2054 per 100,000 live births. Genitourinary fistula is a common complication of childbirth, occurring in 3-4 per 1000 deliveries [40]. The most common risk factors leading to obstetric fistula are teenage pregnancy, first delivery and prolonged labour [27].  Our study has also confirmed this finding from East Africa with rates of fistula occurrence due to teenage pregnancy/early marriage at 66%, first pregnancy/Primigravida at 41% and prolonged labour at 80%.
Most of the repair is vaginally under regional anaesthetic, and the success rate is more than 90%. Despite this high success rate, persistent urinary and faecal incontinence is commonly reported following surgery [40]. Observational studies reported 10-12% [27].

The capacity to prevent and treat obstetric fistula is a major problem facing developing countries. Studies in Uganda reported that the magnitude and severity of obstetric fistula could not be estimated in 2003 because there was no existing capacity in health facilities to manage fistula cases and keep better records of their operations. The gaps were widespread and range from inadequate dissemination of policy and national guidelines on reproductive health, lack of skilled personnel trained on fistula treatment; inadequate theatre space, supplies and equipment; absence of fistula course as an examinable subject in medical school’s curriculum; lack of community awareness on the causes and remedy of fistula; and lack of financial schemes to support fistula programmes [24]. South Sudan is experiencing the same challenge of capacity gap and this study has found that there was no policy or national guidelines on reproductive health and fistula management; only 3 doctors  and 6 nurses/midwives have been trained on fistula operations, and this training was found to be inadequate (6 months only); there were no education activities to aware the public about the causes and remedy of obstetric fistula; there was a big problem of funding gap of fistula operation, and despite the fact that the previous 5-year fistula repairs have been funded by Development partners such as UNFPA and MSF, the National Government has not committed any financial allocation to the annual fistula camps, and therefore, there still remains a big number of patients on ‘waiting list’ to be operated once funds were available for the next fistula camp.

A joint campaign effort by Development partners (USAID, EngenderHealth, Fistula Care, and IntraHealth organizations) indicated that obstetric fistula can be prevented through three pillars [41]:
Primary prevention through:

• Adolescent and maternal nutrition,
• Education and empowerment for women,
• Delaying marriage and child bearing.

 

Secondary prevention through:

• Birth preparedness and complication readiness, including transportation and family decision making,
• Skilled attendance at every birth,
• Monitoring of every labour with the pantograph for early recognition of obstructed labour,
• Ready access to high quality emergency obstetric care,
• Community awareness raising and education about prevention and treatment of obstetric fistula.

 

Tertiary prevention through:

• Early recognition of developing or developed fistula in women, who have had an obstructed labour or genital trauma,
• Standard protocol at health centres for management of women who have survived prolonged/obstructed labour to prevent further damage.

Obstetric fistula lies along a continuum of problems affecting women’s reproductive health, starting with genital infections ending in maternal mortality. Because of its disabling nature and dire consequences – social, physical and psychological –  it is the single most dramatic aftermath of neglected childbirth[36]. Its prevention must ultimately lie in a profound change in the status of women. This change must involve, among other things, recognition of women’s value, starting with adequate nutrition in childhood and continuing with access to primary education as a very minimum. It must include the eradication of harmful traditional practices like raising the age of marriage, giving women other ways of achieving social status than early child bearing[42,43].

In South Sudan, compulsory free primary education has been introduced.  Early marriage (before 18 years of age) is prohibited by Child Act 2008. However, despite the fact that this Act has not only been well disseminated, it does not provide for the exact age of marriage. Moreover, the use of condoms as a contraceptive and prevention of sexually transmitted illness is not well understood and the provision of essential obstetric care is still limited.

 

 

LIMITATIONS

The study is retrospective and it mainly relied on secondary data collection from the hospitals and the fistula treatment reports; hence the very patients that have been treated with obstetric fistula did not participate. A population based study could have been ideal but not feasible in conflict-prone settings. Hospital records and poor record keeping do not represent a reliable source of accurate information. As a result of this limitation to hospital based study, a prevalence of obstetric fistula in South Sudan could not be accurately estimated by this study.

1. The study initially aimed at targeting a total of 150 patients at the age 15-49 years who are admitted with obstetric fistula in the three hospitals (52 patients from Juba Teaching Hospital, 51 from Wau Hospital and 47 from Rumbek Hospital) but at the time of data collection, only 126 patients 15-49 years admitted had proper records of their fistula operations and this was the number reached (47 patients from Juba teaching Hospital, 41 patients from Wau and 38 patients from Rumbek Hospitals).
2. The health service provider questionnaire was initially intended to be completed by personnel involved in fistula management in all the three hospitals. However, due to logistical challenges, only the provider personnel in Juba Teaching Hospital participated; that is two obstetric surgeons and two of the four midwives/nurses who attended fistula management training in Addis Ababa that were currently involved in fistula management and care completed their questionnaires. Nonetheless, the Obstetric surgeons in Juba Teaching Hospital mentioned that there is only one obstetric surgeon who has been trained with them on fistula management currently in Wau Hospital and there is none in Rumbek Hospital. In addition, there are no nurses and midwives trained on fistula care in both Wau and Rumbek Hospitals. Because of this lack of skilled personnel trained on fistula management in those two hospitals, the investigators thought that it was relevant to base the study in those facilities only on using existing data from theatre records and reports of previous fistula operation and rather exclude the provider assessment.
3. The study had also intended to include a capacity assessment of health stakeholders in the Ministry of Health and Development partners to determine the capacity that exists in addressing the fistula problem. This would have been another good source of data collection if undertaken. However, given the fact that in the first place, no policy or national guidelines/protocols on reproductive health and hence fistula management existed in the country, the study team decided to make only consultative meetings with the Directors of Research and Reproductive Health in the National Ministry of Health to in order to their necessary give guidance and direction on the relevant aspect that this study should concentrate on, and indeed the study has been directed towards knowing what are the characteristics of women with fistula and what challenges exist in managing the fistula cases in the country.

 

 

 

RECOMMENDATIONS

• Immediate Recommendations

1. Juba Teaching Hospital and Wau and Rumbek Hospitals be immediately facilitated and strengthened with manpower to train obstetric fistula management for pre and in-service providers.
2. A core team of four (4) surgeons and four (4) nurses/midwives be trained to conduct obstetric camps and in-house training of “medical officers”. Four Obstetric Fistula Regional Management Centres be established, equipped and facilitated at Maridi Hospital (West), Kuajok Hospital (North), Malakal Hospital (North East) and Yei Hospital (South-Central). The selected sites have functional capacity and a critical mass of clients and would serve as training centres for service providers.

• Review of medicinal school undergraduate and postgraduate curricula for obstetrics and gynaecology to introduce fistula management as an examinable subject with measurable or defined skills and competences.

1. A National Coordinator for obstetric fistula programmes is appointed on contract basis for 3 years. The coordinator should be a full time job occupied by a Senior Clinical Specialist.
2. HIMS data collection tools should be upgraded so as to specifically capture data on obstetric fistula.
3. The National Policy guidelines and service standards for Reproductive Health services should be developed and effectively disseminated to all stakeholders, using available channels of communication.

 

• Mid-term Recommendations

1. All state and county hospitals be equipped and staffed to cater for emergency obstetric care especially theatre facilities for emergency caesarean section and vacuum extraction.
2. Review of training curricula for Doctors, Nurses and Midwives in labour monitoring and appropriate interventions, with emphasis on prevention of obstetric fistula.

• Advocacy for community participation in health related matters especially obstetric fistula.

1. Introduction of referral systems that are reliable and efficient in terms of transport and communication (equipped with Ambulance and hotlines), for all women during pregnancy and childbirth.
2. The provision of transport to collect patients from designated centres to hospitals for repair in collaboration with developmental partners would ease access to services to those who cannot afford transport.
3. Introduction and enforcement of a financial scheme such as a community loan or contributory fund to assist the disadvantaged to access health care for their ailments particularly miserable women with obstetric fistula.

• Establish a community loan scheme for support of reproductive and other health services.
• Health Insurance.
• Establish Biannual regular “Regional VVF Camps” at regional referral hospitals.
• Strengthening community education and mobilization with enabling community legislation, building confidence in health care facility utility and examining cultural practices and beliefs particularly, the advocacy against early marriage, girl child education and the role played by the traditional birth attendant in the community.

1. In-service specialised training which aims at providing skills in management of obstructed labour and prevention of VVF as well as appropriate hands-on skills in management of fistula. The training could be conducted here in South Sudan using experts from Ethiopia or Uganda fistula hospitals or the trainees being sent to the centres in Addis-Ababa and Uganda. The in-country training is more cost effective.
2. The pre-service training curricula for doctors, clinical officers, midwives, nurses and other support staff should emphasize such skills as will improve prevention of fistula formation particularly community education, mobilisation and involvement in management of fistula.
3. All postgraduate students in obstetrics, and gynaecology should receive hands-on skills in repair of obstetric fistula and be required to be assessed on their competence.

• Detailed protocol and guidelines on management of obstructed labour and repaired fistulae should be developed, including communication skills for the health staff and distributed to all health facilities.

 

• Long-term Recommendations

1. There is need to train health professionals involved in the management of obstetric fistula using locally adapted guidelines and standards.
2. The following interventions should be strengthened to ensure access of services:

• The provision of transport for referral,
• Adequate staffing,
• Financial logistics,
• Supplies and appropriate equipment.
• All regional referral hospitals should be equipped with obstetric fistula specialised equipment. Efforts are made to introduce regional training and service centres to impart improved skills in the treatment of obstetric fistula – hands on in-service training.

1. Every effort should be made to put in place programmes or activities that offer support and rehabilitation to women with fistulae within their communities without enhancing stigmatization.
2. Communities and rural health workers should be sensitized on the cause and prevention of obstetric fistula, so that women who sustain obstetric fistula are mobilised and motivated to go for surgery.
3. The government should encourage Education of the “girl child” and “economic empowerment of women and their communities”.

• High profile should be given to the cause and prevention of obstetric fistula and this could increase the number of women coming for delivery in health units.
• Prevention of formation of new fistula by implementing the safe motherhood objectives:
• Provide guidance to health care providers in the delivery of quality maternal and newborn care services at all levels,
• Enhance quality of safe motherhood services:
• Pre-conception care e.g. Nutrition and adolescent health,
• Antenatal care,
• Intrapartum care,
• Emergency obstetric care,
• Postnatal care,
• Provision of adequate accurate information education and counselling services, e.g. Adolescent Sexual Reproductive Health.
• Integrated maternal and newborn service into National health System.

1. Review clinical procedures that create barriers or delay in management of fistula patients:

• Timing of pre-operative assessment under general anaesthesia.
• The role of post operative chemoprophylaxis.
• Routine pre-operative laboratory investigations.

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