Background
Vaginal fistula (VF) is a common condition among women globally, characterized by an abnormal opening between the vagina and another nearby organ, such as the bladder, colon, or rectum, allowing uncontrolled leakage of urine and/or stool through the vagina [
1]. It has devastating effects on women’s physical and psychological health, and has significant negative socio-economic consequences on the affected women and their families. It can lead to neurological disorders, orthopedic injuries, bladder infections, painful sores, kidney failure, and infertility [
2]. Many VF survivors go unreported and live marginalized lives in poverty and die in humiliation and dishonor [
3]. It mainly affects young, poor, and uneducated women in remote communities with poor maternal health care. VF survivors face neglect from family and the community, are often childless and seen as outcasts [
4]. VF frequently results from injuries obtained during childbirth, violent sexual assault especially during armed conflict, surgery, infection, cancer, or radiation treatment [
5]. It is a life-long disability that affects a woman’s productivity at household and community levels [
2,
6‐
8]. Most (> 90%) VF survivors have also lost their baby during birth [
9] and are abandoned by their spouses in most African countries [
10]. Broken health systems e.g. during crises, leading to obstructed access to health care, lack of skilled personnel, and inadequate infrastructure and supplies, increase the risk of VF [
11‐
17].
VF prevention and management tends to focus on the physical problems, neglecting issues of social support and community re-integration. VF survivors often struggle to restore their “marital value”, loss of which led to isolation and loss of identity. They use problem-focused coping strategies such as homemade absorbent pads to manage incontinence, frequent bathing and use of herbs and smoke to mask odour [
18‐
20]. They also use surgical treatment, remarriage, and transferring to new communities to gain acceptance [
21]. They have been referred to as ‘modern lepers’, using faith to cope [
22].
VF affects an estimated 2–3 million women, primarily in Sub-Saharan Africa and Asia [
23]. In Uganda, it affects 2% of women aged 15–49 years, with western Uganda having the highest prevalence of 4% [
1], although the trend shows a decline in prevalence due to improved training and facilities [
24]. VF surgical treatment is part of the package of free health services offered in Uganda.
However, VF prevalence, consequences and lived experiences among refugee women have not been documented widely globally or in Uganda. Uganda hosts the largest number of refugees in Africa, most of who have fled armed conflict in the neighbouring countries. Globally, there are over 32 million refugees and asylum seekers [
25‐
27]. Refugees face significant physiological, social, and psychological problems due to their situation. They often stay in isolated areas during transit and resettlement, leading to low self-esteem, depression, and their consequences. They struggle to be accepted, to engage in social and economic activities, and experience physical injury, feelings of powerlessness, emotional breakdown, despair, divorce, social capital erosion, and lost years of health [
18,
28]. The present study aimed to explore the socioeconomic, physical, psychological lived experiences and coping strategies of refugee women with VF in two refugee settlements in south-western Uganda, namely, Nakivale (pop. 136,399 on 71.3 mile
2) and Oruchinga (pop. 8176 on 8.4 mile
2). It aimed to identify the lived experiences of refugee women with VF who have been diagnosed but not yet undergone VF repair, those whose repair has been successful, and those whose repair attempts have, so far, been unsuccessful, and their coping mechanisms. The findings may benefit individual refugee women, their families, communities, and humanitarian society in making informed decisions on extra services for VF survivors. The study also contributes to knowledge by exposing the additional challenges faced by refugee women with non-obstetric VF. The study aims to provide informed recommendations for intervention and screening measures at transit and entry points to ensure early care for VF survivors.
Theoretical framework
The socio-ecological model and the transactional model of stress and coping are two theories that help explain the experience of VF from different perspectives [
28,
29].
The socio-ecological model, revised in 2005, focuses on the interaction between personal, situational, sociocultural, and environmental factors, including the built environment. It helps to understand the influence of intrapersonal and interpersonal behavioural factors on women’s health and social circumstances, as well as socio-cultural and environmental factors such as policies on the occurrence and consequences of fistula.
The transactional model of stress and coping is used to understand the risk factors that affect refugee women and girls in their communities and may be used to design interventions to address the reduction of risks at different levels. This model provides a more holistic approach to health interventions that not only targets individual health needs but also addresses the need for social change. The transactional model of stress and coping shows that VF stressor demand is made by the internal or external environment that upsets the survivor’s balance, affecting their physical and psychological well-being and requiring action to restore balance. Refugee women perceive VF stressors as person environment transactions, which depend on the impact of the external stressor. They evaluate not only the features of the stressful situation but also what they can do about it. They assess their perceived ability to change the situation and manage their emotional reaction to the threat through actual coping strategies.
The main coping efforts in this model are problem-focused and emotion-focused coping strategies. Problem management strategies, which are more adaptive for changeable stressors, include active coping, planning problem-solving, information seeking, and use of social support. Emotion-focused coping efforts, which are more suitable when the stressor is unchangeable, are directed at changing the way one thinks or feels about a stressful situation [
30]. Overall, the socio-ecological model and transactional model of stress and coping offer valuable insights into the experiences of refugees with VF. By incorporating these models into public health practice interventions, researchers can better understand and address the complex interplay of biological, psychological, social, cultural, economic, and political factors affecting the experiences of these individual.
Results
The ten refugee women with VF interviewed were aged 24–50 years, having had VF for periods ranging from 2 to 15 years. Three were Somali, three from DR Congo, two from Burundi and two from Rwanda. All had been married before, with five divorced and two separated from their spouses during flight. Most had no children due to stillbirths or one child, but three had a child. Of the 10 VF survivors, 5 attributed Obstetric Fistula (OF) as the underlying cause, 4 reported being victims of armed sexual assault and 1 case was linked to cancer (see Table
1).
Table 1
Socio-demographic characteristics of the participants
N | 32 | Congolese | Since 2013 | Gang Rape | Married | 3 | Failed repair |
A | 24 | Somali | Since 2010 | Obstetric | Divorced | 0 (Still birth) | Failed repair |
M | 39 | Rwandese | Since 1995 | Obstetric | Divorced | 0 (Still birth) | Failed repair |
N | 50 | Congolese | Since 1990 | Obstetric | Married | 0 | Still with the fistula |
N | 43 | Burundian | Since 2011 | Rape | Married | 6 | Successful repair |
M | 45 | Rwandese | Since 1996 | Obstetric | Divorced | 3 | Successfully repaired |
A | 41 | Somali | Since 2015 | Rape | Widow | 1 | Successfully repaired |
B | 50 | Congolese | 15 years | Obstetric | Married | 3 | Not yet repaired |
S | 42 | Somali | Since 2010 | Rape | Separated during war | 7 | Successfully repaired |
K | 24 | Burundian | Since 2015 | Cancer | Divorced | 1 | Irreparable |
The study identified 20 significant themes from transcripts, which were then grouped into five major themes: Poor maternal health care services (Poor infrastructure and Poor/no health facilities), Sexual abuse (Rape and Vaginal piercing Rape) Social discrimination (Deserted, Neglected and Divorced), Emotional disturbances (Shame, Shunned, Depressed, Stigma, Suicide and Pity), and Poverty and dealing with a difficult situation (Un-employment and increased expenses) as shown in Table
2.
Table 2
Shows the common initial codes, Higher level codes axial themes and the essential themes
How you got the problem /Causes: |
Difficult delivery (I) Prolonged labour (III) Removed dead baby (I) | Obstructed labour Stillbirth | Poor/no health facilities | Poor or no maternal health care services |
After the operation (II) Instrument delivery (I) | Instrumental |
Cancer (I) | No screening services |
No transport (II) Far Health centre (II) No roads (Fear to travel to Hospital (II) | No or poor roads Far or no Hospitals, no staff to attend to them | Poor infrastructure |
Rape (III) Pierce private part using instruments (II) | Forced sex Vaginal piercing | Rape | Sexual abuse |
Onset |
Seeing blood passing through my anus and vagina (I) Seeing stool pass through my vagina (I) | Unusual experience | New experience | New experience |
Sudden unexpected onset of blood (I) Sudden onset of urine (II) | Unexpected |
I cannot even tell what caused this problem I was later old | Unknown problem |
Effect |
Living with family members and community |
Husband abandoned me: (I) Took my children away (I) Hide/Isolate self from others (III) No longer considered a family member (I) | Family neglect Divorced | Neglected/Loss company Divorced | Social discrimination |
People abandoned me: (IIII) Calling me bad names: (I) People avoid me due to smell: (III) Avoid people: (II) People complain of bad smell: (I | Neglected |
Waste of family money: (I) Arrested because of mistaken identity: (I) | Increased expenses |
No value in me: (I) Problems double: (I) Life becomes useless, not worth living (II) Hell on earth: (I) Physical shock: (I) Mental shock: (I) Shame: (I) Sadness and guilt: (I) | Loss of self-worth Hiding suffering Felt labelled Labelled criminal Guilt Depression | Suicide Depressed Shame, | Emotional disturbances |
Interference with sex: (III) Mess in bed and clothing’s: (Terrible smell: (III) Bad smell: (IIII) The woman who defecate on herself: (I) | Feeling Dirty Dirty | Deserted, Shunned, stigma |
Experience during movement: Difficult movement: (III) Chest away by people because of bad smell: (III) Abuse of being smelly: (II) Perceiver: (I) | Abandoned Insult | Neglected and Depression |
Coping with economic and spiritual life |
Difficult to do business: (Difficulty in working or maintaining: (III) Fear of crowd: (I) Stopped all social life: (I) Collapsing business: (I) Customers chest away by smell: (I) Difficulty in getting a job: (I) | Difficulties in selling Difficulties in getting and maintaining a job | Un-employment | Poverty and Dealing with difficulties for surviving |
Change in eating habit: (I) Increased demand for water and soap: (II) Increase economic burden: (I) | Increased expenditure | Increased expenses |
Life as a refugee: |
Food ration not adequate: (I) Miss hot meals served at the reception centre: (III) Difficult to attain a ration card long bureaucracy: (IIII) Difficult to stand online: (III) Miss monthly food ration: (II) | Lengthy ration collection waiting time, Long refugee registration process, Long food distribution duration Inadequate food ration | Long Bureaucracy |
Expected life Donation of pads: (III) Help to get ration card: (I) Help to get ration food: (II) | Hygiene need Support | Survival |
Coping |
Privacy to clean-up myself: (II) Not minding the smell: (III) Drinking less water: (II) | Hiding Adopting to smell | Coping | Pity Coping |
Going back to parents: (II) Sympathy from other (IV) Pity from people: (III) Sympathy: (I) Fear of praying with people: (I) | Sympathy from the community | Pity |
Putting all my trust in God: (II) Crying telling God: (I) Increase church-going: (I) | Sympathy and trust Religious | Empathy from Community Feeling more religious |
Lived experiences with VF
The participants reported that VF brought them shame and stigma in their society. They experienced social discrimination. They used words like feeling “shunned” “persistently avoided”, “shame”, “deserted”, “neglected” and “divorced”. They feel they have been “isolated” from and “abandoned” by their family members and society. The survivors reported that they often feel “denied” by those who have shown them love and care, losing their respect and value in society. They feel “fearful” of attending social gatherings and encountering people. They feel “worthless” due to VF consequences, leading to a shameful life in the community and in bed, due to failure to perform normal recreation, and have a feeling of being “cursed” among women (see Additional file
1).
‘I was married for 18 years but immediately I got this problem he (Husband) abandoned me for another woman because he could not tolerate the smell and the wet beds every time. He said he has spent a lot of money on me in hospital bills and he still needs a baby, and there is no more value in staying with me as his wife’. (M, Rwandan refugee).
Similar consequences were experienced by tthree other participants:
‘After the problem, my husband decided to marry another wife since he could not withstand the smell and the wet beds. He even took away my children from me’ (M, Burundian refugee).
‘After getting this problem he couldn’t tolerate it. He chased me away from his home, that I should go back to our home until I get healed and regain normal life as before’ (A, Somali refugee).
‘I was married for nearly 5 years but when I got this problem my husband abandoned me for another woman’ (N, Burundian refugee).
Feelings of shame were a prominent report among the women.
‘It is such a disturbance and a shameful moment to my normal life, …. This forced me to go back home to my parents since I could not tolerate the shame and fear of failing to perform my duties and function as a woman’. (K, unrepaired Congolese refugee).
‘I had a terrible smell as I didn’t have any time to bathe and there was no soap to use or enough water, no additional clothes to keep changing into. I could see people covering their nose whenever they were with me. … one passenger got out of the bus because she couldn’t travel in a smelly taxi’. (N, successfully repaired Sudanese refugee).
Apart from shame, feelings of loss of self-worth and guilt were reported. ‘… they started abusing me, calling me all sorts of names, as a woman who has been cursed .., I felt sinful and not human enough, not worth living…” (S, gang raped Somali refugee, still unrepaired).
‘Though my husband decided to marry another woman, I felt it was o.k., … I felt guilty because of my husband being wet every night from my urine, I feel small and worthless’ (M, Burundian refugee, still unrepaired).
The participants’ narratives were replete with multiple accounts of personal emotional disturbance:
‘I was last happy in my life when I was still a girl’. (M, Rwandan refugee).
Four of the survivors experienced suicidal thoughts at least once:
‘Life became useless, even, my normal life became less enjoyable (tears rolling her eyes) even my husband does not even want me, is life now worth living?’ (K, Congolese refugee).
‘I had already taken a rope to kill myself, but my thoughts told me to come to the nearest border’. (N, gang-raped Congolese refugee).
The personal predicaments of the women were aggravated by their status as refugees. Right from the border points of entry into Uganda, through the transit centres to the settlement sites, the women felt a lot of social pressure due to their VF condition:
‘… policemen would chase us away because they could not bear the smell of faeces and urine. Even the fellow refugees … chased us out because of the unbearable smell. …we were put in a big tent …. and I was chased away … to sleep outside, where I was badly bitten by mosquitoes. (N, Sudanese refugee).
Moreover, the VF survivors experienced discrimination on the basis of their history. For example, rejection was enhanced if one had been raped, because this was also associated with having acquired HIV. The in-laws wanted her out of the family since they believed that she was going to spread the disease to their brother.
‘The worst words of abuse came from my in-laws. … They forced my husband to abandon me, saying that I was already infected with HIV by the rebels’ (N, gang-raped Congolese refugee).
Negative feelings were worsened by a sense of hopelessness because help was not immediately forthcoming. The organisations in which the VF survivors placed their hopes did not show much concern over the problem.
‘Even the fellow refugees with whom we were placed in the same room would chase me out because of the unbearable smell’. (K, Sudanese refugee with VF due to cervical cancer).
Hopelessness was enhanced by the awareness that the likelihood of successful repair dwindled with every failed attempt.
‘I have been to many hospitals here in Uganda and also hospitals back home but they just had bad news for me. The Doctors tell me that the problem I have cannot be repaired anymore, I have no hope in life. ... People are tired of me., Life is not worth living. All that is on my mind is, I think if I die that would be fair to end this suffering’. (A, Somali refugee with repeated failed repair attempts).
Obtaining ration cards and monthly food rations was also a challenge, due to long queues, leading to missing food rations.
‘It was really difficult to attain a ration card and supplies. The long queues, waiting time and the back-and-forth referral day after day… I failed to attain my ration card’. (M, Rwandan refugee).
‘It was hard to get the food ration card and even making lines and stand the whole day while leaking like that.’ (N, Burundian refugee).
Coping mechanisms
As the participants faced difficulties, they struggled to maintain their physical health and social lives through various mechanisms. Some looked for jobs. Others sought assistance from sympathetic family members or religious organisations and faith-mates. Some of the women with VF sent the neighbours’ children and well-wishers to help them collect the food rations, although they were sometimes rejected by the food distributors(see also Additional file
1).
‘I always send my neighbour and well-wishers but this is not always a success. Sometimes, they are refused my food ration’. (A, Somali refugee).
Some attempted business while others resorted to begging and being dependent on family members and well-wishers.
‘I sold second-hand clothes. However, I could not stand for long because I had to be on and off, to change my clothes. One time, they stole 20 pieces of clothes from me while I had rushed to change diapers. …, I had to quit the business. I tried to work as a housemaid …but the family chased me after just a week, abusing me for being unhygienic and smelly’. (A, Somali refugee).
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