Twenty-one women (Santiago Atitlán, n = 10; Livingston, n = 11) were interviewed. Participant demographics, stratified by community, are provided in Table 2. Women in Livingston had higher average household incomes, educational attainment, and literacy. Marriage rates in both communities were comparable. About 80% of women in both communities reported having ever been screened for cervical cancer.
Cervical Cancer and Screening Knowledge and Beliefs
Cervical cancer knowledge discussed in qualitative interviews was variable across sites and across women. Overall, women in Livingston shared greater cervical cancer knowledge than women in Santiago, though several women at both sites reported no cervical cancer-related knowledge. This knowledge difference is supported by previously published quantitative findings among the larger HPV MES sample, which found higher knowledge of HPV and perceived severity of cervical cancer in Livingston.[13] In Livingston, the majority of interview participants had heard of cervical cancer and several women reported knowledge related to cervical cancer development and symptomology, including that it is often asymptomatic, resulting in later-stage diagnoses and poor prognoses for women who are not regularly screened.
I had heard of cancer of the neck of the womb [cervix], that if someone is not periodically getting their Pap smear…you can’t detect it because it’s silent…it has no symptoms and then it’s there, so you didn’t realize, and it’s already advanced significantly. (Livingston, Garifuna, Age 46–50, Screened)
In comparison, no knowledge of cervical cancer as well as misinformation related to cervical cancer was more commonly reported in Santiago. For example, several women shared beliefs about the causes of cervical cancer that were not related to sex or to HPV, including that it is caused by sadness or worry, bad food, or lack of vitamins. While sharing her desire to learn more about cervical cancer one women asked:
[…] I want to know more about where this illness comes from. Let’s say my daughter, some days she’s fine but other days her stomach hurts. That’s why I ask, how does this illness start […] could it be that you get sick a lot…or you have a certain diet. I don’t know. That’s just what I have heard. (Santiago, Tzutujil, Age 46–50, Screened)
Poor hygiene or a lack of personal care was also commonly cited as a cause of cervical cancer.
There are cases in which they say that all of a sudden the cancer appears in the neck of the womb [cervix] when you don’t take care of yourself or don’t have good hygiene... (Santiago, Tzutujil, Age 40–45, Screened)
Women at both sites, including those self-reporting lower levels of knowledge spoke of the connection between cervical cancer and sex, though few mentioned HPV. Many discussed this relationship in terms of male partners engaging in extra-relational sex with other women or with sex workers as well as women themselves having multiple sex partners. In turn, women discussed the need to “cuidarse” or take care of oneself within the context of sexual relationships. When asked what it mean to take care of oneself in relation to cervical cancer, one Santiago participant explained through an interpreter:
She has heard that to take care of herself, she shouldn’t sleep with other men. Because she heard that when men have sexual relations with a lot of women…it’s possible that you get infected with this illness. (Santiago, Tzutujil, Age 30–35, Never-screened)
Knowledge related to cervical cancer screening also differed greatly across participants. In both Santiago Atitlán and Livingston, several women reported no knowledge of cervical cancer screening but familiarity with Pap smears specifically, suggesting women may obtain screening without understanding its purpose. When asked if she had heard of a test to detect cervical cancer, one participant in Santiago responded:
I don’t know of one. I don’t know simply because we subject ourselves to any of that. (Santiago, Tzutujil, Age 30–35, Never-screened)
However, when asked if she had heard specifically of Pap smears, she responded:
Yeah, I have heard, well they told me that it’s a small apparatus that is introduced to a women’s internal part where they examine her.
Women posited that lack of knowledge related to cervical cancer and screening in their communities was tied to limited sexual education informed by cultural taboos around sex and reproductive health.
There are teachers that see this as taboo and so they don’t want to speak openly about sexuality, few speak about it or see it as something normal, like a normal part of life […] so maybe of the 100%, 45% have the freedom to speak this way, openly, about sexuality, both others, they are limited. (Livingston, Garifuna, Age 26–30, Screened)
Despite these taboos, informal and formal conversations (e.g., community trainings or charlas) between women were an important source of knowledge. Speaking about her friend who encouraged her get screened, one Livingston women explained:
Because she is also open, because there are people who are embarrassed to talk about these things, like they are very private sometimes, but with her I don’t have any problem talking with her. (Livingston, Garifuna, Age 46–50, Screened)
Barriers to Cervical Cancer Screening
Women across both communities expressed similar barriers to obtaining cervical cancer screening. Barriers generally fell into one of three, often intersecting, categories: individual, interpersonal and system-level. At the individual level, cost was the most cited barrier. Though all women in Guatemala are entitled to free cervical cancer screening through publicly run women’s health clinics, in practice ancillary costs including transportation, food, and loss of income pose significant barriers to screening.
There’s a shortage of money…You go to a [women’s clinic] and you pay for a taxi, you pay for a pick-up truck and sometimes people just can’t do it and then, because of this they say, “better not, I have to save up to go there, better not, and if I go and they don’t see me, better to not go”. (Santiago, Tzutujil, Age 26–30, Screened)
Women also perceived the cost of future tests and treatment that may result from a diagnosis as a barrier to seeking screening. When asked why she had never been screened, one participant in Livingston explained:
Maybe because it requires money and also if one suffers from an illness that’s what happens because people have many illnesses and sometimes they tell you, you have to buy this medicine now and you do not have money, I cannot buy it. (Santiago, Tzutujil, Age 36–40, Screened)
Women understood this both abstractly and from personal experience. Among those who had previously received screening, two women shared their own stories of being unable to afford treatment after a positive screening. One participant from Livingston recalled being unable to afford a biopsy after doctors found a lesion on her cervix during a routine Pap smear:
Well, in fact I got a video colposcopy because according to the results, I have […] an ulcer on my cervix. I got a video colposcopy […] and the doctor explained everything to me, that I have to do another test to make sure it doesn’t become cancerous, you have to detect it early, so it doesn’t become cancer. But with my economic situation…for me I can’t afford more tests. (Livingston, Ladino, Age 26–30, Screened)
At the interpersonal level, several women also cited male partners as a potential barrier to obtaining screening among women, citing a culture of “machismo” in which women are seen as subordinate to men.[16] This barrier was twofold: men who exert economic control over their female partners may refuse to provide the money for screening or male partners may withhold permission, explicitly or tacitly, for their female partners to obtain a screening.
Because they are men who say no, because of machismo…and the women also say “my partner doesn’t want me to,” so no. Women are scared that they [the men] will hit them or leave them. (Santiago, Tzutujil, Age 30–35, Screened)
For other women, this control was more subtle. After experiencing extreme abdominal pain, one women’s mother insisted she obtain a Pap smear:
I didn’t want to go, but my mom came and told me, “let’s go because this…is going to kill you”. So I went with [my family] to get the exam, but it was already late and my husband was about to come back from the mountain and I got very worried because we didn’t have money, and he didn’t know anything and no one told him anything. I went that one time in a hurry and that was the only time I have done [a Pap smear]. (Santiago, Tzutujil, Age 40–45, Screened)
Women described how knowledge acquisition related to cervical cancer was also informed by gender norms.
I also think it’s machismo. The majority of women live with machista men, they demand order, food, everything in the house. So I think this also influences the lack of knowledge. (Livingston, Garifuna, Age 26–30, Screened)
Fear was also a barrier commonly expressed by women in both communities. At the individual level, fear of pain or discomfort during the screening itself was common among the women screening-naïve women.
[I have not been screened] well, out of fear, why lie to you. I have this fear, I can’t explain it exactly…but every time that I have to do the Pap smear, they notify me, but I always end up refusing. The fear about the Pap smear, how do I explain it, what I am scared of is the instrument. (Livingston, Garifuna, Age 26–30, Never-screened)
[…] they say that it hurts, that they insert I don’t know what, a tube that, yes but when I went when I saw, I realized that no…that it wasn’t like that. (Livingston, Garifuna, Age 26–30, Screened)
Women in both communities expressed fear of embarrassment or vergüenza of being seen by a doctor or other healthcare worker. Notably, this fear often presented a barrier to seeking screening even when free-of-cost screening was available. Often this fear centered on the need for a healthcare provider to view intimate body parts to conduct the screening.
I’m embarrassed. I don’t know why, my daughters have told me, “Listen this is where they are providing Pap smears for free, why don’t you go mama. You are sick. It’s deadly. You have said yourself you have never taken care of these things…maybe you have a bad stomach”. But I say I have decided to die this way…I don’t want [doctors] to see me I say. […] So it happens that I have never done [a Pap smear]. (Livingston, Ladina, Age 50–55, Screened)
Women in Santiago expressed similar concerns:
Before in Santiago Atitlán, women almost never saw the doctor because of embarrassment of being seen [nude]. Because the women only want to be seen by their husbands and no one else. Because it would be an ugly thing for them to be seen by someone else so they, more than anything, feared [the embarrassment]. (Santiago, Tzutujil, Age 26–30, Screened)
Fear of disclosure of personal information was another barrier. In both communities, women cited personal experience or experiences among their friends and family in which their medical confidentiality was violated. This fear stemmed, in part, from the fact that healthcare workers were often well known in the community or even related to their patients.
Well, uh, when people know each other, it’s uncomfortable because, imagine that they’re looking at you, there are people who do not have professional ethics and they are talking about your vagina and all of these things, but when there are people that don’t know you, that’s not an issue, there is security. (Livingston, Garifuna, Age 26–30, Screened)
To avoid potential violations of their privacy, women at both sites traveled to other towns to obtain screenings.
Well, because I think that at times here at the health center you lose a little bit of ethics, then because we all know each other, already there isn’t much confidence in this sense…if one knows the things going on with a patient, it doesn’t need to come out…it needs to be something confidential…because this has to do with someone’s willingness to do [a screening]. Because if one sees that there is no formality, then what for. Better I don’t do it or I find somewhere else to do it. (Livingston, Ladina, Age 20–25, Screened)
Further, general concerns about treatment by providers presented a barrier to screening for many women. In Santiago Atitlán in particular, indigenous-identifying participants described experiences of discrimination when obtaining screening at the local health center.
[…] after a while laying down my vagina started to hurt. I had a Pap smear not long before and it did not hurt much but that day it hurt a lot. The speculum wouldn’t go in, it doesn’t reach the uterus maybe…They though that I didn’t understand Spanish, so she was explaining to the other nurse, “the speculum won’t go in what are we going to do”... (Santiago, Tzutujil, 30–35, Screened)
When asked how this experience made her feel she responded:
[It made me feel] bad, I asked the nurse why she didn’t put the speculum in. “No it went it. It reached the uterus,” she told me. But I heard what they were saying because I was laying there with my legs open. But I was angry with myself. If I had done it in another place, it would have been better to pay…it’s free, but as they say, what’s free comes at a cost.
System-level resource constraints were commonly cited by women in both Santiago Atitlán and Livingston. Despite access to government subsidized screenings at public health clinics, women cited shortages of tests and long wait times.
Suppose there at the [public women’s health clinic] one goes early, at six in the morning…and you leave at eleven or twelve in the afternoon. It’s a long time for someone, and you have to be cooking and doing things in the house. (Santiago, Tzutujil, 30–35, Never-screened)
Due to these shortages, women often sought screenings through traveling health campaigns or jornadas; however, these options also presented challenges. When describing the process for obtaining a free screening at health campaign in Livingston, one participant explained:
You could say, the woman who gets there first, gets the test. Because when they come, when they give screenings, they only bring tools for a certain number of people…if they only bring enough for 50 people, only 50 people will be seen…you have to wait until the next time come back…it’s stressful because...sometimes you don’t sleep because you’re thinking about waking up the next day early to go running [to get screened]. (Livingston, Garifuna, Age 25–30, Screened)
Barriers to obtaining a free or low-cost screening in turn, create a tiered system in which those women who could afford to pay out of pocket for a screening at a private clinic, were more likely to seek care. Speaking about healthcare more broadly, one woman in Santiago Atitlán explained:
I don’t go because I don’t have much money. In the [private hospital], it’s not the same as going to the [public women’s health clinic]. At the [public women’s health clinic] they don’t charge, but there aren’t specialists. There are times when for this reason people don’t go to the doctor to see what illness they have, until they are even more sick. (Santiago, Tzutujil, Age 25–30, Screened)
Facilitators to Cervical Cancer Screening
Despite significant barriers to screening, a large proportion of our sample reported being screened at least once in her lifetime and women described several facilitators to screening. In both communities, the desire to know one’s health status motivated women to obtain screening.
Well, I thought, if I don’t do it, I’ll get worse. I have heard that there are many young women who do [the screening] quickly to stay clean, and that’s why I thought to do [the screening] before something bad happens to me (Santiago, Tzutujil, Age 45–50, Screened)
Among some women who had obtained previous Pap smears, screening was often precipitated by symptoms or other health concerns.
What happened was I had a miscarriage, or they had to do a curettage because all of a sudden my bleeding was really, really heavy so they sent me to do a curettage but they told me first they were going to do a Pap smear. (Livingston, Ladina, Age 25–30, Screened)
The first time I did [the Pap smear] was because my stomach hurt really bad, so I said, “I don’t know what I have” because it hurt a lot and I had a lot of discharge. It hurt constantly so I went, that’s why I went to see what I had. (Santiago, Tzutijul, 25–30, Screened)
Women also described interpersonal and system level facilitators that promoted cervical cancer screening. Though not consistent across participants, some women expressed that provider-communicated screening guidelines helped them to obtain screenings. When asked how she knew to obtain her first screening, one Livingston resident replied:
Well, in general how I told you, through information, through the [local health clinic] because sometimes one goes there…they explained to me what it was about, why it was good to do it and because of that, I had no problem [getting screened]. (Livingston, Garifuna, 45–50, Screened)
At the system level, health fairs, or “jornadas”, outside of the public health system also facilitated screening. Women often traveled to nearby towns hosting health campaigns for a variety of health services. Of note, several women described health campaigns as irregular, lacking follow-up and often tied to some other event.
If they bring [materials] for only 50 people, they are only going to attend to 50 people. So if someone comes after those 50, they cannot get their Pap smear. They have to wait until the next time they have the health fair and they can go. They also don’t do follow-up. (Livingston, Garifuna, 25–30, Screened)
In one extreme example, a participant from Santiago Atitlán obtained her first and only Pap smear during the aftermath of Hurricane Stan in 2005, which resulted in mudslides that killed over 1,000 residents.
I got my Pap smear after the accident caused by Hurricane Stan. That day, they set up shelters for people and they came from the health center to do a health fair and I took advantages to get my Pap smear. (Santiago, Tzutujil, 30–35, Screened)