Uterine fibroid: a socially malignant illness in Haiti

Abstract

This qualitative study documented the effects of uterine fibroids on the suffering of women in Haiti. It makes a unique contribution by re-socializing this disease, by making visible the social inequalities and what is at stake for the women, for their families, and for healthcare delivery. Uterine fibroid is a benign tumor of the uterus, common in gynecology, but profoundly malignant in how it affects women’s lives. Little has been reported on their lived experiences. Haiti has historical, social, and economic factors that hinder the search for treatment. The study explores how and why patients seek surgical care for uterine fibroids at Mirebalais University Hospital. Seventeen in-depth interviews with patients and seven accompanying family members were conducted and recorded in Creole and translated into English, along with participant observations in two patients’ homes. Content and narrative analysis were done iteratively, and the processual ethnographic method was used to relate our findings to Haitian history, to the context of the study, and to future implications. The women’s experience of accompaniment, their suffering in their pèlerinage (care-seeking journey), and the troubling social impact of uterine fibroids make it a socially malignant illness. The study shows that it is critical to address the suffering of women afflicted with uterine fibroids by strengthening the Haitian health system, improving economic advantages, and establishing ways for them to gain access to social goods and participate in community activities.

Keywords:

• Haiti
• women
• gynecological surgery
• gender inequity
• social suffering

Introduction

Vignette: caring for fibroid patients

Mirebalais University Hospital (MUH) is one of the rare hospitals in Haiti that has continuously delivered gynecological surgical care since its opening in 2013. Patients at the outpatient clinic for gynecological care come from all across the country. One desperate patient arrived at MUH with a large distended abdomen caused by uterine fibroids (UF). After all the prerequisite medical exams had been performed, the clinician sent her to the nurse scheduler to arrange for surgery. Yet, the patient was never contacted, and a year later was still waiting for access to surgery as she continued to suffer from the enlarged fibroid with pain, discomfort and sleep disorder. As a result, she turned to a private clinic in Port Au Prince (P-A-P) for surgical care, but they requested an exorbitant fee. The patient had no choice but to return to MUH with the expectation of getting the care she needed for her suffering.

Many patients encounter similar situations as the waiting list for gynecological surgical care for UF is extensive and growing, and many of them do not have the resources to turn elsewhere for their medical conditions. This situation is an example of the failure of the Haitian healthcare system to meet the medical needs of the population.

Position of the first author and researcher

The primary author is a Haitian obstetrician and gynecologist, clinician, feminist and right-to-health-care advocate. The relationship of the first author with his patients is based on the deliberative and informative model (Emanuel and Emanuel 1992) to meet the medical as well as the social needs of the patient. In this model the physician builds a positive relationship with the patient, empathizes with their suffering, informs them of the treatment options and, takes into account their situation and values to provide the best care options for their patient. Since May 2008, he has been working formally at Partners In Health (PIH), known in Haiti as Zanmi Lasante (ZL). ZL is a major healthcare NGO committed to providing comprehensive quality clinical care to the rural population in Haiti since 1985. The first author is the chairperson of the OBGYN department at MUH and deeply adheres to the mission of the organization that is to serve as an antidote to despair for those seeking health care. After the disastrous earthquake on January 12, 2010, the Haitian government asked PIH to build MUH in the central plateau in rural Haiti as part of the effort to rebuild the healthcare system. MUH is the biggest hospital built and supported by PIH in rural Haiti with a capacity of 300 beds. One third of the hospital is dedicated to the obstetric and gynecologic (OBGYN) department that is composed of several sectors: a triage area, labor and delivery, pre- and post-partum wards and one gynecology ward. Services delivered include prenatal care, family planning, ultrasound, gynecological care, complete emergency obstetrical care, gynecological surgery, and a cancer-screening program. The first author observed that UF were the most frequent pre-operatory diagnosis at the outpatient department of the OBGYN ward and the most frequent cause of gynecological surgery.

Uterine fibroids

The literature about UF in Haiti is limited. Therefore, the literature review has focused on UF publications in the United States with a focus on UF in the Black population. UF are benign tumors of the uterus, and are the most frequently encountered tumor in gynecologic practices. UF affects the quality of life of women and their families (Downes et al. 2010; Vilos et al. 2015). A study in a large urban center in the US documented that uterine fibroids occurred more frequently among Black women as compared to white women and that the cumulative incidence of fibroids was greater than 80% in the Black women in the study population by the time they reached the age of menopause (Baird et al. 2003). Family history of UF, race, age, and hypertension have been shown to be risk factors for UF in previous studies (Stewart et al. 2017; Millien et al. 2021). Fibroids can be located anywhere in the uterus and their size is variable from fairly small to a large mass that can disturb the pelvis (Munro et al. 2018; Somigliana et al. 2007). Sometimes UF can exceed the confines of the pelvis to occupy the abdominal cavity simulating a pregnancy (Bulun 2013). Without treatment, UF can exist for years and result in both acute and chronic complications including hemorrhage, anemia, chronic pelvic pain, acute pelvic pain, infertility, infection, deep vein thrombosis, chronic constipation, hydronephrosis, mictional dysfunction, sarcoma, abortion, premature delivery, and intrauterine fetal growth retardation (Zaima and Ash 2011; Vercellini et al. 2009; Fletcher et al. 2009; Patwardhan and Bulmer 2007; Gupta and Manyonda 2009). Further, a study of Black populations in the USA has shown that perceived racism was associated with UF and both perceived and internalized racism were associated with depression among the population with UF (Porter 2020). Moreover, Black women with UF in the USA were subject to increased stress because of discrimination based on racial and gender discrimination in America (Myles 2013). Observation, open laparotomy, laparoscopy, radiology and pharmacology are the treatment options currently available for UF (Donnez and Dolmans 2016). Yet these treatments are inaccessible for the vast majority of Haitian women with UF and, as a result, they are deeply affected clinically and socially (Millien et al. 2021). To understand the treatment gap of UF in Haiti it is important to look at the Haitian historical context.

Historical context

Due to the lack of available, affordable and effective treatment for UF and other conditions that require surgery in limited resource countries, the physical, psychological, economic, and social impact of this surgical disease is more significant than in wealthy countries (Meara et al. 2015). The historical and political context of Haiti has led to an extremely weak healthcare system resulting in the enormous suffering of the population from otherwise treatable conditions. Historical accounts of the colonial era of French domination and a plantation economy built on enslaved African labor from 1492 to 1804 note that health infrastructures were primarily for the colonizers and the military (Bordes 1980). Whereas in the plantation slavery, enslaved people were coerced and subjected to all kinds of physical, psychological, and cultural atrocities to maximize the harvest for their masters (Trouillot 2006). The postcolonial era began in 1791, when enslaved Africans led a revolt against the French plantation masters. Women joined the ranks of the revolutionaries. The Haitian revolution sent shock waves around the world when the formerly enslaved people defeated Napoleon’s Army and won independence for Haiti in 1804 (Girard 2013). However, the tactical fighting of the revolution was economically devastating for the country, destroying the vast majority of goods including the sparse medical institutions in the plantation economy (Parsons 1930; Bordes 1980). In 1825, the French threatened recolonization, and forced Haiti to purchase its sovereignty. Over the next century, Haiti was compelled to pay France 150 million French Francs, including during the period of American occupation (1915–1934) (Phillips 2008). The Haitian people paid this odious debt through the 1940s. The ongoing debt and financial punishment of postcolonial Haiti are considered as causal factors in the country’s lack of financial and human resources to invest in medical and health care institutions (Bordes 1980).

During the American occupation some health infrastructure was created but the majority of the population in the rural area had no access to even basic medical care, and even less to surgical services, because of the lack of qualified medical professionals (Parsons 1930; Best 1994). Under the long Duvalier family rule of Haiti (1957–1986) wealth was further concentrated in the hands of a small number of elite families and most of the population suffered poverty and political repression. In 1990, Haiti democratically elected its first president. This president was ejected because of his anti-capitalistic rhetoric after the country was embargoed by the international community. Since then, continued promotion of private interests over public investment has made improvements in the public provision of health care virtually impossible (Fass 1988).

Consequently, the impoverishment of Haiti – both historical and present day, is reflected in a woefully inadequate health system. The ratio of hospital beds per Haitian citizen is seven per 10,000 people in Haiti compared to the ratio of sixteen per 10,000 people in the Dominican Republic according to the WHO (consulted June 22, 2020). The lack of surgical specialists is evident in Haiti and is more dire in rural areas (Ivers et al. 2008). Haiti, with 5.9 surgical care specialists for 100,000 people (Peck et al. 2019), is significantly below the ratio of 20–40 surgical specialists per 100,000 recommended by the Lancet commission on global surgery (Meara et al. 2015) to address surgical care including for fibroids. Although this is a significant gap, there are no previous qualitative studies published about UF among patients in Haiti with the objective of addressing these deficiencies. Therefore, the team decided to research this common illness via a convergent mixed method study in order to provide better clinical care to patients with fibroids (Millien et al. 2021). The findings reported in this paper focus on the qualitative component of this convergent mixed method study. This qualitative component explored how and why patients seek surgical care for UF at MUH. The study aims are (1) to understand the suffering of women in their care-seeking journey for uterine fibroids; (2) to explore the meaning for women while living with UF and their complications; (3) to evaluate the socio-economic impact of uterine fibroids; (4) to explore some limiting factors that influence the care of UF.

Methods

A trained research assistant and the first author conducted interviews from October 1, 2019 to January 31, 2020 in a confidential area at the hospital chosen by the researchers. The first author and his research assistant approached participants. The study inclusion criteria included women ≥ 20 years old with UF previously confirmed by ultrasound who did not have a medical problem limiting their capacity to participate in the study. Those excluded were women < 20 years old, or those who did not have ultrasound confirmation, or who did not consent or were medically unable to participate in the study. One criterion was sufficient for a participant to be ineligible. Participants were selected purposefully based on eligibility and their willingness to participate in the study through face-to-face interviews at the hospital. Prior to joining the research study, participants were required to read and understand the purpose of the study and sign an informed consent form; if patients were unable to read, the form was read and explained it to them.

Semi-structured interviews and recorded notes from ethnographic participant field observations were used to collect the qualitative data. The first author only performed participant observation, which included extensive observation and the writing of field notes. In-depth interviews, which lasted for about 60 to 90 minutes, were conducted with 17 consecutive women with UF. These women were selected based on their agreement to participate in the interviews according to the following criteria: (1) having fibroids for at least two years; (2) a complicated fibroid condition including fibroids with chronic pain, hemorrhage with severe anemia, chronic constipation, etc.; (3) having waited for at least two years to get access to care for the fibroids while living in or out of the Mirebalais community; (4) having a giant fibroid; (5) were willing and capable of describing their experiences with the disease.

The following topics were covered in the interviews: (a) the woman’s experience with fibroids; (b) the woman’s journey in seeking care for fibroids; (c) the meanings women attributed to having a complicated fibroid; (d) the effect of fibroids on women’s ability to work (e) effect of fibroids on the expense in the family for basic needs.

In addition to interviewing women with UF, each participant could refer one adult family member to provide additional input on the experiences with UF. Of the 17 participants, seven family members consented to participate in the study. In-depth interviews were conducted with the family members with the intention to have witnessed what the women endured with UF, a way of providing corroboration. The interviews with family members covered the same topics as the women with UF.

In addition, two women from the seventeen women in the qualitative sample consented to home observation. These two women had giant fibroids and/or a complicated fibroid, with symptoms of the disease for at least two years. Due to the time constraints, only two home observations were conducted. Data were collected only about these two women and not from other members of the family. The purpose of the home observation was to have a better comprehension of the effect of UF on daily life. The following topics were covered: (a) how the woman suffered with fibroids while at home; (b) the implication of fibroids on the woman’s family activities; (c) family support for the woman with the disease.

A semi-structured interview guide was used while collecting the data. The in-depth interviews were recorded in Creole and then transcribed into English by a trained research assistant and the corresponding author, both Haitian Creole native speakers. The initial translations were reviewed by the second and fifth authors to assure the quality of the data collected and to provide improvements in the review of subsequent transcripts. During the middle of the data collection, another set of the transcripts, chosen at random, was reviewed for eventual feedback. The process of data analysis was closely supervised by the second author before all other authors provided their input. Contrary and additional interpretations were handled by consensus through discussions with the research team. A general analysis of all transcripts, including narrative analysis (Katz and Mishler 2003), was carried out by the corresponding author and reviewed by the second author to generate key concepts or theories that could eventually be developed to answer the research questions. The research team conducted subsequent discussions for validation focusing on the research question (i.e. how and why patients seek surgical care for UF at MUH). Content and narrative analysis were done iteratively using an inductive process (Hsieh and Shannon 2005; Katz and Mishler 2003), to come up with the findings. This analysis was developed by starting with open codes to highlight the important portion of text in the transcript related to the research question, codebooks to label important portions of the text to create multiple different labels or codes in a word document, and by grouping labels into broader concepts. Pseudonyms were used to identify the quotes. The processual method used by Moore (1987) was carried out to examine the connection of our findings with history, the current context of the research and implications for the future. In the processual analysis, a literature review of the colonial and the post-colonial history of Haiti with focus on health care and political economy was carried out. Integration and interdependence of the history within the current context of the research were performed to look at the direction and the character of the changes observed in the research findings and to make recommendations for the future. The inquiries compared and contrasted different methods of engagement of the participants in the research. It included: (a) Record field notes during participant observation conducted over 2 to 4 hours for two women with fibroids and observation of the participants during the interviews; (b) Explore the role of the health system and gender inequity in the suffering of women with fibroids; (c) Explore the journey of locating care for fibroids; (d) Understand women suffering at home and at the hospital with fibroids; (e) Understand the social impact of UF.

Findings

Reflexivity

During the qualitative interviews and collection of ethnographic field notes from home observations, the first author observed that women struggled with the consequences of UF in difficult social contexts. During the study, the first author observed that women with UF were suffering and often experiencing bleeding while desperately looking for care, in potentially risky conditions such as roadblocks, kidnapping, violent strikes, and bad transport conditions, and while remaining responsible for household tasks. As a researcher, the first author experienced these difficult circumstances on a daily basis while going to work as well as when he travelled to conduct the ethnographic participant home observations. By working closely with women with UF in the social political context for many years and as a feminist and right to health care advocate, the first author was well positioned to empathize with and analyze what the women endured in a complex environment of suffering. The first author recognizes that his personal relationship with his patients, his occasional involvement in his patient’s home environment, and the patient-value based care that he practiced could influence the results of the study. Further, the fact that all authors share the philosophy of PIH as being an antidote to despair and working with vulnerable people in health care delivery could have also influenced the results of the study. During the interviews, the first author witnessed firsthand the physical, psychological and social suffering of the women while living with the illness. He deeply understood what women faced in their pèlerinage (journey)¹ of care seeking for UF and recognized that action is needed to alleviate the suffering from UF.

During the study, women described how an arduous care-seeking journey, in their words, a pèlerinage (pilgrimage) through a broken health system, and gender disparities worsened their suffering. Consequently, they have been affected physically, psychologically, and socially. The following themes emerged from the analysis.

Pèlerinage of women while looking for care for UF

In this paper, women with UF defined pèlerinage as their journey while looking for care for UF. They described this nonlinear journey as an arduous search for treatment, which often lasted several years. They roamed private clinics and public hospitals recurrently without getting treatment for their illness. They reported the unaffordable cost of surgical treatment in private clinics. When they then chose to go to MUH having heard that very cheap treatment was available, they were afraid of the road and risky transportation conditions. Even at MUH, women described long waits for care. Women encountered seemingly endless barriers to treatment, as they went from place to place on the long cycle of struggles during their pèlerinage.

I discovered I had fibroids several years ago…in 2010. I always feel pain on the right side of my belly when I am about to have my period. I used to feel a little pain. And, after I told someone about that, he said I would need to see a gynecologist to examine me and see if there is something growing inside me. So, the doctor I consulted in Port-Au-Prince asked me to do a sonography test and I did. I consulted the doctor in HUP (public hospital), Port-Au-Prince. He told me to go to do the test at a private laboratory. I brought the results back to him. He told me I have three fibroids. The biggest one was 4 centimeters in size. As for the two others, one was 2 centimeters and the other one was one centimeter. I did the sonography in 2010. I did the test once again in 2015. I discovered I had five fibroids. I consulted and did the test at PROFAMIN (private). This is a Health center of state located in Delmas 31. When I came to seek care for fibroids here, the doctor asked me to do the test again. I never got medications. I always ask the doctor to prescribe me medications to make the fibroid stop developing. He said no. All he can prescribe me are pills to reduce the pain. In 2015, the doctor who consulted me at the PROFAMIN Health Center told me to do everything I could to have surgery and remove them so that I could get pregnant. He told me that I could get pregnant if I had surgery. I never had the chance to have that surgery because the doctors working at private hospital ask a lot of money. God put this hospital [MUH] for us because it takes care of us, it does not ask us too much money. Doctors practice surgery on patients. God put it on our way. I learned about MUH while someone was talking about it. And I said I would like to go there. But I always hear people saying the roads are bad. I am scared of the roads because of « Morne à Cabri ». – Josette, teacher with UF from Port-Au-Prince

The long journey at the hospital and the trip to Mirebalais is exasperating. – Lynne, unemployed women from Port-au-Prince.

It is important to note that the journey of the patient was much longer than expected. In addition to private clinics, they went to see charlatans or traditional healers to find a cure without any results.

I suffered a lot because of the disease [uterine fibroids]. In order to find the cure, I consulted all kinds of doctors, charlatans, traditional doctors. As my health issues remained unchanged, I decided to go consult a doctor in a Health center and finally, the Health centers referred me to MUH. I appreciate the care that I received from the doctors and nurses at MUH. – Chantale unemployed woman with UF from Mirebalais

During their pèlerinage women suffered deeply with their illness. Throughout most of the interviews, they expressed their physical, social and emotional suffering because of the illness. They reported that they suffered from mictional difficulty, bleeding, anemia, abnormal menstruation, infertility and more. Sometimes they were very stressed and depressed.

My period lasts eight days. And it used to last three days. When I have my period, I bleed a lot and, I have anemia. Consequently, I cannot stand a lot, sometimes I cannot urinate, and I cannot be involved in any activity. And I have four children. By mentioning ‘activity’, I mean, I should be able to work somewhere or own a business so that I can help the children financially. Because of the fibroid, I cannot support them. That makes me feel bad because their father is the only one working to care of them but, should I have a job or a business, I would be able to help him provide for the children when he runs out of money. – Carline, small businesswoman with UF from Port-Au-Prince

I’m very depressed and consider myself useless. The humiliations that I endure day after day has affected me so badly. Sometimes, I do not find a sense to my life. I should be able to work and take good care of myself like a normal person. I tend to lose hope when my life gets too complicated. – Saintanise, unemployed woman with UF from Mirebalais

In addition to the physical suffering during the pèlerinage women with UF endured gender inequity issues. The interviews show that women with fibroids and family members described that in their culture, housework is the responsibility of women in the community. Sometimes, although they suffered deeply with the uterine illness, they tried to carry out the housework to satisfy their husbands. Additionally, their partners thought women should get pregnant when they get married without realizing that they were infertile. Sometimes they got angry with their partners who refused to have sex with them because of the disorder.

I have a boyfriend. We have sexual encounters. But I am still not pregnant. I have one sister and four brothers. They support me. My boyfriend supports me. My boyfriend complains about my illness because I cannot get pregnant. When I cannot have sexual intercourse with my boyfriend because of the pain I feel, he gets angry. He does not curse or yell, but my incapability to have sex troubles him. – Jesula, unemployed woman with UF from Port-au-Prince

When I was coming to Mirebalais, I left my husband with my child…I left…I organized the house. Usually, I do everything, I wash clothes, I make sure that my husband’s clothes are ready, I make sure that my child’s clothes are ready, I make sure they have food and I give the maid instructions while I am not home. –Jennie, nurse with UF from Delmas

However, during this arduous pѐlerinage, women expressed the support or accompaniment that they received during their illness. They described it in their own words as their accompagnateur (one who walks with you) the engagement of a person to provide emotional, financial and physical support over time. In the interviews women with fibroids reported that they were supported by their fiancés, family members, and husbands. They obtained emotional and financial support from overseas family members, local family supports for the housework and babysitting. Of course, the interviews sometime show the strong connection and solidarity of their husband in caring, nurturing, and financing them during their pèlerinage for a cure to their illness. In the interviews the women shared the continuous solidarity that they received from their family to overcome their suffering.

My fiancé and my mother-in-law support me. They always cheer me up. They told me not to stress about it. Fibroid is a disease. Any woman could have it. They told me not to worry. They help me out. They support me financially. –Gisele, teacher with UF from Mirebalais

My family supports me. Those who live overseas spoke with me and they told me they would do anything to send me some money when I am close to having surgery. They support me. My family helps with the housework. When I am not at home, my cousin double checks for me. She is my baby’s godmother, she is the one who supervises the house for me, she pays attention to how the servant takes care of the baby. –Lise, unemployed woman with UF from Port-Au-Prince

My husband always comes with me when I come to the hospital. I always refuse when other people tell me they are available to come with me. I say no because when you have someone with you, you need money to take good care of her/him. If my husband comes with me, he knows we do not have much. So, we can buy a meal and we share it together. But you cannot do this with someone else. If the person comes with you to help you, you must take good care of her/him too. When my husband comes with me, he takes good care of me, he buys food for me, we go take a shower, we laugh. I do not get discouraged when he is with me. But, when I am alone, I have no one to talk to. If there is someone at the hospital who sleeps by my side, we talk but I do not feel comfortable. My husband supports me. He has a job. He does not get paid much. When I tell him, I have an appointment with the doctor at the hospital, he borrows money if he does not have any. –Dulca, unemployed woman with UF from Petion-Ville

Social consequences of UF

Consequences of UF on the family life

This research shows us that UF can be very stressful for the family and can even lead to separation. There are expectations that women will have sexual relationships, bear children, and care for the home. These are not always possible with UF.

My husband used to support me when he used to come with me to the hospital. He helped me, he held me, he took care of me. Well, he ended up thinking I had an incurable disease [uterine fibroids] because now, he broke up with me. He is currently living with another woman. They hang out in his car day and night. We built a beautiful home when we were together. He took it back and he said we have no children together. –Jeanine, unemployed women from Mirebalais

Economic exclusion because of uterine fibroids

Women mentioned that suffering with fibroids interfered with their work and impoverished them. Women that had small businesses might have to abandon them, because of the disabling biological effects of fibroids. Scarce money was spent to find potential treatments with traditional healers or exams in private labs. Consequently, they did not have income and savings to continue to look for care.

My work used to drain my energy out of my body. I used to sell goods for a living. This job required me to walk over the streets carrying the merchandise. As I cannot lift and carry anything heavy, I had to stop selling goods for a living. Consequently, I have had no income or savings because of my fibroids. – Saintanise, unemployed woman with UF from Mirebalais

Exclusion from social goods because of UF

Women with fibroids sometimes cannot send their kids to school and pay fees for transportation to go to the hospital to receive care for their fibroids. Further, because of the disease, they cannot buy a decent place to live or afford sufficient food; consequently, the illness keeps them from essential social goods.

I don’t have a job, I don’t have money, I cannot rent a decent place to live and sometimes, I spent three days without eating because of my fibroids. I sometimes choose to suffer hunger to save the money for coming to my acquaintances with the doctors to the hospital. – Anita, unemployed woman with UF from Mirebalais

I am still in school. I am currently in 9th grade. I could say that the fibroid of my mother affects my life…I would not like the disease to get worse. I would not like her to develop another disease because I am still in High school. I do not want her to die. She is the only one I have. I have a father, but it is like he does not exist. My mother is the one who helps me, she pays my school fees, everything for me. When she has to pay the monthly school fee, she talks with the director, and then, she organizes herself to pay. Sometimes, she borrows money. She speaks with the school director so he can wait for her to pay. So, she borrows money so I can go to school. The disease affects her. – Ashley, Family member, daughter from Mirebalais

Exclusion from social production because of uterine fibroids

Women with fibroids mentioned that the disease hampers them from participating in social activities. They related that sometimes they could not go to church to express their faith to God

‘I’m really in bad shape; this fibroid tries to kill me. I can’t wait to have my fibroid removed’. She said, ‘things are worse when I must cross these unpaved roads to go to the school to teach. Sometimes, arriving at the school, I am tired, I had pain and bleeding. I must go back home without doing the job that I like so much. This is my life, Doc, with the disease hummm’ (……. with a big sigh). The patient continued, ‘I could not go to church or any social activity because of the pain and the bleeding associated with the disease’. –Participant field note observation for woman, Genevieve with UF in Mirebalais

Exclusion from civil society and access to healthcare for UF

Women reported that when they tried to get care for their UF they waited too long, and they wanted the hospital to take their cases more seriously. They mentioned that when they went to a private clinic, they were asked to pay so much money they could not afford the care they needed. They related that medical professionals did not take enough time to communicate with them.

Before I got married, I used to have pain, but I never consulted a doctor to know the cause of the suffering. Sometimes my husband reflects on that. We even went to see other surgeons. They asked 200,000 Gourdes to remove the fibroid. My husband did not have the financial means to support the expenses. Neither did I. So, I remained as is…suffering. – Elyse, teacher with UF from Mirebalais.

The hospital could help me by providing care faster. About surgery, the hospital could help me have surgery faster. I would like the hospital to improve the communication between its staff and the patients by helping them find their way inside the hospital, and by telling them what to do so they do not waste time. – Jesimene unemployed woman with UF from Croix-des-Bouquets

Discussion

In this study, we observed that women with UF suffer physically and psychologically due to the inability to obtain timely and compassionate treatment for their UF. Uterine Fibroids is a socially malignant illness due to a broad range of devastating impacts including the poor health system, financial and economic issues, social exclusions, potential lack of accompaniment, lack of adequate transportation, cultural beliefs, lack of housing, and lack of good nutrition among other causes. This study explores the pèlerinage, the care-seeking journey of women with UF. The search for care for UF demonstrates that the Haitian health system is broken. It cannot respond to the health care needs, provide universal health coverage, ensure economic growth, or provide social protection to women with UF in the Haitian population. A study has been shown that a good health system has these previous characteristics (Atun et al. 2015). While analyzing their pèlerinage it became evident that the life of these women with UF was miserable. Because the availability of surgical care in a private clinic in Haiti is sparse for a woman without the financial means, these women have no choice other than to risk their lives in very stressing transport conditions to search anywhere for possible care. Results in the mixed method study supported the risky conditions of transport of women with UF in their search for care (Millien et al. 2021). Unfortunately, the dilemma is that Mirebalais University Hospital cannot provide care for everyone in the country. This situation impacts the quality of care that can be delivered at the hospital, as there are insufficient resources in terms of consulting time with physicians and long wait times for treatments. In this study, we observed that the demand for care for fibroids is high, and the complications are disastrous. Alleviating the suffering of these women with UF requires more than 4.9% of the Haiti health care budget as was provided between 2016 and 2019 (Arenas de Mesa 2019). Funds for creating an efficient system capable of treating UF should be considered as a global health priority. Clearly, the findings in this research document the need given the devastating effects of UF on women’s lives.

The broken health system in Haiti, in addition to the gender inequity in the society, makes women’s suffering worse. In Haitian society men were more likely to be in the labor workforce whereas women were more likely to be involved in domestic activities (Padgett and Warnecke 2011). This imbalance can worsen the suffering of women with UF because they do not have the economic power for making decisions about their own health and the effect of UF contributes to impoverish those effected with UF.

This study supports the fact that Haitian women with UF had similar clinical signs and symptoms to what we observed in previous studies (Vilos et al. 2015; Ghant et al. 2015). A qualitative study by Ghant has shown that UF produced psychological distress, affected women’s sexual life, and made women think they were helpless (Ghant et al. 2015). Our study provides evidence that UF affects women’s sexual life, and can lead to the disruption of the family and affect education of children in Haiti.

Fibroids as socially malignant

Diseases are rooted socially and have numerous social consequences (Waitzkin 1981). In our research with Haitian women, we observed that UF do indeed have numerous social consequences. Women are economically excluded; they are excluded from access to social goods, from social production and from civil society. We observed in our study UF impoverished women with the disease and they were losing their job, their business, and unnecessarily expending money throughout a broken health system without finding treatment or a cure. In the mixed methods study we found UF are associated with a cycle of poverty (Millien et al. 2021).

Accompaniment

In this research, the women describe having an accompagnateur, someone who walks with them and encourages them to ‘go on’. Yet, this research pointed out that accompaniment as a form of social support is perhaps a key relational foundation on the local level to counterbalance the devastating effect of other social suffering consequences of uterine fibroids. We observed in the study that women received physical, psychological, economic, and social support from friends, partners, husbands, and family members both nationally and internationally. This accompaniment is processual and can be built upon and expanded to engage both families and the local community to benefit women with medical conditions. Innovative approaches to accompaniment could develop more structured social support networks where family engagement; the creation of mutual of solidarity – a form of community health insurance (Donfouet and Mahieu 2012); and helping to provide a cash transfer program, housing, and employment for women can limit the out-pocket expenditures for the disease and alleviate the suffering of women with UF. The notion of accompaniment goes further, emphasizing that the term implies a commitment to long term support and pragmatic solidarity for basic human rights (Farmer 2011). Because 96% of the Haitian population are Christian (world data atlas consulted July 18, 2021), it not a surprise that women used the word of God during their pèlerinage because they believe that God is a source of providence who accompanies and delivers them. However, we observed the disease can disrupt the accompaniment’s family dynamics over time due to restricting intercourse, infertility, and the inability to perform everyday activities like caring for children and the home. Women also required additional accompaniment at the hospital to better understand their medical condition and to address it. This fact is very important because women think MUH should be helping them yet they continue to struggle to obtain healthcare and better management of their suffering by UF.

Processual analysis of social roots of women suffering from UF in Haiti

The review of Haitian history, the political context of Haiti, and the findings of this research support the theory of social suffering and structural violence (Farmer et al. 2013). The findings also support the theory of social exclusion (Byrne 2005) which can be considered within the theory of social suffering. The processual method emphasizes that the suffering of these women is rooted in the history and the political economy of Haiti. A climate of poverty has been created by the historical context of colonialism, political instability, recurrent state coups, and economic embargos. This poverty has restricted the health care system and limiting the capacity to alleviate the suffering of these women with UF. Consequently, this study demonstrated that suffering from fibroids is due to impoverishment by UF, absence of a good health system, social exclusion, gender inequity, unemployment, financial difficulties, and the lack of mechanisms and guidelines that support the care for fibroids. These failures lead to the conclusion that UF can be considered as a social malignancy. It implicates the fight against social exclusion, poverty, corruption, neocolonialism and political instability is critical to support the health care needs of Haiti. Innovation, research, win-win partnerships, pragmatic solidarity, creation of systems and social support including accompaniment are some important elements to consider broadly while addressing care for UF and other health care deficiencies.

Limitations

This paper cannot be generalized to other global populations but provides important insights about the social and economic impact of UF in Haiti. It did not examine the consequences among asymptomatic women with fibroids. It did not describe the transmission of the social effects of UF across descendants. There is possible social desirability bias linked to the researchers of this paper.

Conclusion

UF are a socially malignant disease. They profoundly impact the quality of life of women in Haiti. Women with fibroids have a miserable life trying to manage the disease. This situation is understandable because the physical, psychological, economic and social impact of this surgical disease is more significant in limited resource countries. Strengthening the health system, in addition to processes of accompaniment and social support, and the improvement of the economic condition of women with fibroids can be the solution to alleviate women suffering with UF. This very prevalent disease can eventually be used as a model to address suffering for a broader set of reproductive illnesses such as cervical cancer, endometrium cancer and ovarian mass, with sometimes the same or even worse consequences than UF. Availability of biomedical equipment, qualified health care providers, health infrastructures, medical education program in gynecology, and social support programs are key for reinforcing the health system for early treatment and diagnosis of UF for mitigating its social malignant effect.

Ethical approval

This research was approved by the University’s Institutional Review Board (IRB) and Mirebalais Hospital IRB.

Acknowledgment

Women who participated in the research, Christina Excellent, Jimmy Jean Baptist, Marie Edelyne St Jacques MD, Professor Mary-Kay Smith Fawzy ScD, Maxi Raymonville MD, MMSc-GHD, Wesler Lambert MD, Hanna Gilbert PhD, Lively Christina Thompson MEd, Pierre Marie Cherenfant MD, Loune Viaud, Jacques Saint Fleure MD, Peter Ford PhD, attendings and residents at the OBGYN department at MUH.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Funding

This study was supported by the Harvard University Department of Global Health and Social Medicine.

Notes

1 Pѐlerinage is defined as an arduous care seeking journey of women with UF in Haiti.