Quantitative findings
The data flow of all participants in the study is described in the Figure 3.
Among the populations studied, 70 (60.3%) were between 35 to 49 years old. Sixty-one (52.6%) were from the Central plateau Department (primary catchment area), whereas 55 (47.4%) were from other areas of the country. Over one hundred (87.1%) did not have health insurance. Sixty-seven (57.8%) reported that they experienced a decline in household income. Table 1 describes demographic characteristics and complications of uterine fibroids of study participants.
Of 193 participants included in the analysis, 116 (60.1%) had uterine fibroids (Table 1). The two most frequently observed clinical symptoms included stress 92 (79.3%) and dysmenorrhea 73 (62.9%) (Table 2). In addition, documented anemia 61 (52.6%), and infertility 39 (33.6%) were the two most prevalent major complications (Table 1).
In the bivariate analysis (Table 3, model 1.), the odds of having uterine fibroids were 3.8 times greater among those who experienced excessive expense for transport compared to those who did not have this expense (95% CI: 1.65 - 8.74, p=0.002). In addition, those who experienced income decline had a 3-fold greater odds of having uterine fibroids compared to those who did not (95% CI: 1.64 - 5.54, p<0.001) , and those who were farmers had a 5.1-fold greater risk of having uterine fibroids compared to those without a specific profession (95% CI: 1.04 - 25.29, p=0.044). Family history with fibroids also demonstrated a strong association with uterine fibroids in this population (OR=5.1, 95% CI: 2.11 - 12.33, p<0.001).
In the multivariate analysis women who experienced excessive expenses for transport had a 4.4 times greater adjusted odds of having uterine fibroids compared to those who did not experience excessive expense for transport (95% CI: 1.55 - 12.38, p=0.005). In contrast, women with higher education were less likely to be diagnosed with uterine fibroids compared to those with lower education (AOR=0.3, 95% CI: 0.09 - 0.87, p=0.021). Women with income decline had a 4.7 times greater adjusted odds of uterine fibroids compared to those who did not experience an income decline (95% CI: 2.05 - 10.93, p<0.001). In terms of clinical factors, women with family history of uterine fibroids had a 4.6 times greater adjusted odds of having uterine fibroids compared to those with no family history of uterine fibroids (95% CI: 1.58 - 13.56, p=0.005). The condition of micro polycystic ovary is less likely to be observed among women with uterine fibroids compared to those without uterine fibroids (AOR=0.3, 95% CI: 0.10 - 0.97, p=0.044). Associations were not observed between age, patient status, health insurance, number of births, family conflict, polymenorrhagia, deep vein thrombosis, or depression categories with uterine fibroids in the multivariate model.
Qualitative findings
Qualitative data for seventeen women with uterine fibroids and seven family members of these women were analyzed. Four key themes (A-D, below) describing women’s experiences living with fibroids were inductively identified. They describe the complications and consequences of women’s care-seeking trajectories and highlight the structural and contextual factors that shape them.
A. Health system failure
Many women reported in their interviews that the Haitian health system did not deliver adequate care for their fibroids. While some participants indicated that they began their care-seeking by consulting with a traditional healer close to their home, most eventually sought care for their symptoms within the public or private health system. Women explained that before arriving at MUH, they undertook an extensive number of visits to different care providers – “roaming” from one hospital or clinic to the next in an attempt to seek care for their condition. They recounted that at each stage they were unable to obtain effective treatment. For many, the protracted search for care led to significant delays, increasing pain, and mounting health care costs.
“I came to know I had fibroids at General Hospital in Port-Au-Prince. [Before that] the « Medsen Fey » [herbalist and shaman] told me I was pregnant. Well, there was a « Medsen Fey » who told me I was going to have twins. I said, ‘God knows everything. I know nothing.’ I spent money over, over, and over again [on treatments] and nothing worked out. I got really sick on July 26, 2019. They rushed me to the emergency room of the General Hospital. I came here [to MUH] after I left the emergency room of General Hospital. They asked me to bring the sonography result back, but I could not find a doctor. I finally found one at 9 :00 a.m. I was sent to Rue Monseigneur Guilloux [private clinic]. And … it was 10 :00 a.m. When I got to the place I was sent, the receptionist told me, ‘No, there is no doctor here for this disease’ and said I have to come back the following day at 6 :00 a.m. My cousin could not come with me because she had to drop her children off to school. My other cousin told me she would come to take me and bring me here. They came here with me. General Hospital did not transfer me to MUH. My cousins and I came here ourselves. I consulted several times”
-Unemployed woman with uterine fibroids from Port-Au-Prince
B. Long wait time for incomplete services
Traveling to MUH Mirebalais from the Central Plateau via public transport often entailed a long wait time for getting access to care for their fibroids. Women explained that they often had to leave their homes a full day before their medical appointment. They noted that seeking care for their fibroids at MUH required reporting to different services within the hospital, and each service had a long queue. In some cases, participants reported spending an entire day waiting for their medical consultation, only to be told to leave the hospital and return on the next day. For these women, the wait for a single consultation resulted in a long time commitment with significant social and economic implications.
“I usually leave home at 6:00 am… I take the bus in Delmas 33 to go to Croix-Des-Bouquets. I take another bus there so that I get to the hospital by 8:00 a.m. Well…when I get there, I have to get my records released, I have to get my vital signs checked and, they transfer my records to the doctor. I wait for the doctor if he has not arrived yet… There are a lot of people. There are a lot of people [waiting] for gynecology. This process is very long … I do not like to sleep at the hospital. There is nowhere to sleep there. If I do a test today at the hospital, I must come take the results tomorrow. So, I go [home] to Port-Au-Prince and I return back to Mirebalais. So, that costs me money.”
-Teacher with uterine fibroids from Port-au-Prince
C. Gender inequality
Women with uterine fibroids explained that they often felt pressured to perform all housework including cooking and caring for children (if applicable) with little to no support or minimal support from their spouses or partners. Family members shared this same perception. The effects of uterine fibroids made it exceedingly difficult for women to carry out the physical labor expected of them, but they nonetheless attempted to keep up with the duties they were expected to fulfill.
“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 at home.”
-Nurse with uterine fibroids from Delmas
“If she [my wife] was in good health, she would do all the housework. But she cannot. She cannot take care of the household. Sometimes she cooks, but sometimes she does not. She cannot sit and cook when she suffers from the complications of the disease.”
-Family member, husband from Mariani
Women reported that the effects of the gendered expectations related to fertility were particularly painful for them. Fertility challenges caused women personal sadness, but infertility also led to social exclusion. Women explained that that they were blamed for the fertility challenges that they experienced because of untreated fibroids:
“I am unhappy and so is my husband because of the fibroid, because most Haitian men would like to have children. As soon as you cannot, their family members start naming you: “Manman Milet” (a sterile woman).”
-Teacher with uterine Fibroids from Mirebalais
D. Poverty
Women indicated in their interviews that the physical effects of fibroids imposed a number of social and economic consequences on them. Notably, women with fibroids were largely excluded from social and economic opportunities. Participants recounted how the effects of their fibroids made them lose their job or have to give up their business. The loss of income severely impacted their ability to do housework and pay for their children’s school fees.
“I do not have a job. I used to work in an orphanage and a restaurant. I worked in the morning and in the evening. I had to quit both jobs because of the fibroid.”
-Unemployed woman with uterine fibroids from Port-Au-Prince
“The disease [uterine fibroids] affects my mother because she would have worked in order to take care of my education. The disease [uterine fibroids] affects my mother because she cannot cook, clean up the house, send me to school.”
-Family member, daughter from Mirebalais