Four themes emerged from the data: 1) lack of cervical cancer knowledge/misconceptions, 2) health system inadequacy, 3) lack of trust in providers, and 4) opportunities for improvement. Both male and female community members displayed misconceptions about the cause of cervical cancer, its consequences, recommended screening frequency, and means of accessing care. Providers noted community members’ poor knowledge and low risk-perception as utilization barriers but also highlighted poor health service quality and inconsistent health education as barriers. Poor healthcare quality was a significant barrier mentioned by respondents; this included poor patient-provider communication, lack of transportation to screening facilities, and severe delays in receiving test results. Providers also noted problems with care coordination, provider training, and physical space for screening when discussing experiences providing screening services. Community members reported low levels of confidence in the ability of nurses to perform Pap screening, preferring doctors and specialists. They also frequently expressed discomfort in having male healthcare providers conduct screening. Providers reported low confidence in the ability of government officials to support cervical cancer screening improvements. Suggestions for improvements included more intensive cervical cancer outreach, mobile screening, and having specialists train lower-level providers to perform screening.
Theme 1: Lack of information/misconceptions
Both male and female community members displayed a poor understanding of the relationship between HPV infection and cervical cancer, the symptoms of cervical cancer, and recommended cervical cancer screening schedule.
Misconceptions about the causes of cervical cancer were frequent. One male focus group member respondent thought “it might be passed through the blood (Men’s FGD 1)”, while others thought that it was due to a “lack of hygiene” (Women’s FGD 1) or to “a residue from abortion” (Women’s FGD 1). The connection between cervical cancer and HPV infection was rarely mentioned.
Cervical cancer is a tumor that appears in the uterus of women…because they have a lot of infection or [because of] not doing a Pap screening (Women’s FGD 1)
... they hit, hurt themselves, and that damage causes cancer to the cervix (Men’s FGD 4),
I think it [cervical cancer] comes when they have a home birth in the rural areas, and they don’t have all the [proper] care they have at the hospital (Men’s FGD 2)
Women always have to have at least three children because if they don’t... then they don’t get to eliminate all the bad things they have in their body... they get cervical cancer (Women’s FGD 2)
Women knew that cervical cancer was a serious and potentially deadly disease that affects the cervix but often could not describe its symptoms. For example, women stated conditions such as “numbness of the feet” (Woman’s FGD 3) as symptoms. Male focus group respondents had similar knowledge gaps regarding symptoms and, in addition, low overall awareness of cervical cancer. Several male community members, such as this respondent, were unaware of cervical cancer prior to the study:
“I’ve never heard [about cervical cancer]. [This is] the first time I’m hearing about this” (Men’s FGD 4)
In interviews, providers frequently stated that low cervical cancer awareness was an important barrier to screening. In addition, community members and providers noted a lack of information about how and when to access proper cervical cancer screening and care services. Few community members could accurately describe when and how often women should be screened for cervical cancer, and providers noted that some women think a single screening was sufficient.
I don’t know until what age it [the Pap test] should be (Women’s FGD 1 )
[Regarding the age at which women should begin to have Pap tests] It depends on the ... doctor to come and say, right? When, what year is it to be done? Because … let’s say … we as parents or as a couple can’t tell them, right? Because mostly they say it is ten years old. I’ve heard before about fifteen years old when her first [menstruation] starts. (Men’s FGD 1)
They think that “once it [the Pap test] is done, I’ve done it,” and that is it for their whole life (Provider Interview #5)
Misconceptions about the availability or accessibility of screening and treatment services were also common among male community members. Some, like this community member, thought that screening was only offered at certain times of day at certain times of the year.
That [screening] is not all the time. There are seasons. It can’t be done any day (Men’s FGD 3)
Others did not realize that the Pap exam was free.
‘Of course the exam costs ... I don’t know how much it costs, but of course, it costs … and if there is an infection, I think the treatment costs too (Men’s FGD 3)
The health personnel interviewed frequently mentioned that communities do not understand the severity of cervical cancer nor the reason or required schedule for Pap tests, especially among teenagers. They attributed this lack of knowledge in part to poor health education outreach on their part and low participation in existing health outreach events.
“Some take it [cervical cancer] with ... some responsibility, right? But for others it is, it is as if they were told you have the flu, and they do not give it much importance because I don’t know, there is no consciousness yet, right? (Provider Interview 1)
“That’s the big problem, isn’t it? We lack an [health] education among people … especially adolescents, the problem of HPV awareness, for example, is serious in ... in adolescents, right?” (Provider Interview 4)
“Generally, men don’t attend [community health meetings]. It’s necessary to insist… with great insistence, they attend. They attend community meetings, but [for community meetings on] health they do not appear” (Provider Interview 2)
Theme 2: Health system inadequacy
The second broad theme to emerge in interviews and focus groups was the inadequacy of current cervical cancer screening services. Poor physical access to health education and screening services and delays in receiving feedback after screening were frequently mentioned barriers to cervical cancer screening and diagnosis. Women’s focus group participants discussed the difficulties of accessing care in rural communities that lacked comprehensive medical facilities and laboratories. They acknowledged that there were health centers located near their communities but stated that they still needed to walk for several hours to access these facilities, often in harsh weather, crossing rivers, and other rough terrains. They bemoaned the lack of public transportation to these health centers.
Participants noted that the lack of on-site laboratories was particularly concerning because Pap test samples obtained in rural areas needed to be sent to laboratories located far away, and this caused severe delays in receiving results. In addition, the women stated that health personnel often did not provide them with a follow-up date to obtain their Pap test results, but rather that there was an understood waiting period for the communities of approximately two to three months for results to return. As a consequence, the responsibility fell on the women to frequently travel back to health centers to obtain their results. As one woman noted, “we have to come [continuously] to ask…” [for the result] (Women’s FGD 1 ). Some women complained that they never received their Pap test results and believed that the results must have been misplaced or lost. They noted that they rarely received an explanation for the delays in receiving results. One woman noted that for her Pap test results, “it has been one year … they don’t give them, they always get lost, they say” (Women’s FGD 1). Men also noted problems with obtaining results.
I don’t know [about my partner’s Pap test results]; she hasn’t told me ... because she hasn’t brought me the results since a year ago. There are no results, and we do not know if she is sick or healthy….(Men’s FGD 3)
The repeated delays in receiving results had soured community members on cervical cancer screening, with numerous respondents in both the male and female focus groups saying that they no longer saw the point in continuing screening.
When I had it done, they didn’t give me a remedy or result, and since then, I don’t want to go get a Pap smear because they didn’t give me the answer. (Women’s FGD 2)
They don’t give us [the results], so that’s why we don’t want to; we don’t want our wife to get it [screening] because they never give us the results. (Men’s FGD 4)
Providers were aware of delays in the communication of Pap test results and noted that this reduced demand for screening, with one provider stating that because of delays, “people hardly want” Pap tests (Provider Interview 5). In addition, they noted that the handling of samples at the labs was problematic, with one provider stating that “they [health personnel] don’t handle it [Pap test samples] well, we get samples handled poorly… (Provider Interview 6). Even when Pap test results are shared, community members, particularly men, said that they sometimes did not understand the results and wanted better communication on the meaning of Pap tests and their results.
That too, we want them to explain the analysis results and the results they give. So that we can also explain to our wives and tell them to have the Pap test (Men’s FGD 4)
Geographic inaccessibility made contacting communities difficult and resulted in patchy, inconsistent health outreach and education activities in rural communities. This lack of outreach by health professionals was frequently mentioned by community members, particularly men, who noted the lack of visits by more senior health professionals and a lack of long-term engagement and one-on-one dialog on the part of health educators.
No, … but the doctor has never been asked to come to the meeting to talk to us, to explain what diseases are like, nothing (Men’s FGD 4)
They [health educators] come, weigh the children, measure them, give them tablets, and that’s all… bye, go home to heal, they say. And they don’t explain anything to us. They visit nobody. Why are we going to lie? They have never come to the house, and we would like them to come and explain to us (Men’s FGD 3)
But, in addition to the physical difficulties in reaching communities for health education, providers noted that the health educators were often not qualified and that there was conflicting health information being provided by the different organizations providing cervical cancer screening information in the community.
Health information is also given, but sometimes they bring a student from ... an intern, for example, or a general practitioner who is on duty. They who do not have all the knowledge, let’s say, to give the information” (Provider Interview 3)
But the big problem is that, the [cervical cancer] information [NGOS provide] is not similar to all” (Provider Interview 1)
Other health system barriers to cervical cancer care that emerged from the interviews with providers included a lack of staff and a lack of space and equipment for provider training, especially training to collect Pap test samples.
It [lack of staff] is a problem, for years we asked [for more staff], according to the rules, for example, there should be … a regular nurse and an auxiliary for each shift. It is not fulfilled; we do not have this. We have a nurse who is our auxiliary or one who is in two services, right?… the clinics, none of the clinics has a single nurse (Provider Interview 6)
We requested [in the past] any training, and it was given to us. …Now, there is absolutely no training, and, as I said, we need to read, and update ourselves, all those things [regarding sample collection], right? (Provider Interview 1)
Some of the poor service quality was laid at the feet of the health authorities, who were said to lack strategy and robust plans. Providers felt that authorities only cared about the Pap test coverage numbers rather than the quality of care or funding for diagnosis and treatment.
Everything is coverage, coverage and they [health authorities] say, “Come on!” they just want to see how many [women with PAP test] we have, how many we are doing, etc. (Provider Interview 1)
Theme 3: Lack of confidence in mid-level and male providers
Related to the theme of health system weakness, a separate and consistent theme that emerged in the focus groups was an underlying lack of confidence and trust in the local health personnel. Community members did not feel that the health personnel met their health needs or expectations of quality care. As noted in the health system inadequacy theme, community members were frustrated by delays in getting Pap test results and poor communication with the health personnel in their primary health care centers. However, in addition to this, there was a seemingly deeply held belief that local health personnel at these centers were not skilled enough to collect adequate Pap test specimens. Both men and women in the community stated that they trusted gynecological specialists, especially female gynecologists, and preferred them to local health providers for performing Pap tests. Distrust of local providers and a questioning of their skills were reinforced by past negative experiences with the health system
[Discussing why women do not have Pap tests at the local health center] “it is that the doctor is a specialist … and here it’s only a nurse” (Women’s FGD 1)
I think that a gynecologist specialist knows what part [of the cervix exactly they are going to take samples [from] … a general doctor is not as often in that zone [of the body] and maybe can miss” (Women’s FGD 3)
Even if they [nurses] have been trained, there will always be mistrust. The work they do will never be good. If there is doubt, it [screening] is not going to happen even if there is the opportunity” (Men’s FGD 2)
Yes, it [the test] has to be with a doctor because the nurse does not know how to do the exam” (Men’s FGD 3)
Related to the lack of trust in local providers was a lack of confidence in male providers to perform Pap tests and a strong preference for female providers citing comfort, relatability, and trust as reasons for this preference
Yes, well, for us, a woman [gives us] more confidence” (Women’s FGD 1)
Why [do I prefer female providers]? because between women, there is more trust…I would ask her for advice, and, as a woman, she would know (Women’s FGD 1)
[Pap tests should be] with women always; I imagine they [female users] have more trust in women. Especially the gynecologist. If it’s a man, some [women] don’t want to [get tested]. If there are only men, women don’t want [screening]. (Men’s FGD 3)
“It has to be a doctor. A woman should assist because there is more trust because among women they have no shame. But if the doctor does the test… mmmm I think they [women] are ashamed” (Men’s FGD 1)
Although healthcare providers noted that machismo had decreased as a barrier to men supporting their female partners to be screened, they stated that fear and shame persist and that female doctors are preferred for screening.
That [machismo] has been decreasing. It is not like it was before; there is no such jealousy. I mean, we tell the couple, and now, well, it is ... it is ... it is Ok for them (Provider Interview 3)
In interviews, providers also noted that poor quality of care had reduced trust in providers. Most communities trusted traditional healers more than formal care providers, seeking care from these healers before getting formal care.
First [point of contact] is the healer and according what he tells them, then they come [to the health service], when he tells them “this isn’t for me, it’s for the medic .” He even says which doctor [to visit] “Go to sees this doctor” (Provider Interview 1)
Theme 4: Opportunities for improvement
All focus groups and interviews contained recommendations for improving cervical cancer prevention and care services and for increasing access to reproductive health care in general. However, suggestions for change differed markedly between the three groups of respondents.
Women’s suggestions centered on improving physical access to services. For example, several women in focus groups suggested extending public transportation schedules to facilitate travel to and from health centers. Male community members’ suggestions focused on improving and increasing the cervical cancer health education they received so that they could better support their partners. They requested more frequent community health education talks and, overall, expressed a desire for more leadership and coordination on the part of health professionals in health education efforts.
It would be good if it [health education] would be organized from above, right? Because we don’t know when they come, when they will do it so, I think the doctors should communicate: “Well, people, this is going to be done.” It is necessary for the doctor to set a date to hold the meeting, another date to test all the women, so everyone gets ready (Men’s FGD 4)
If it there is a talk and it turns out that not a single woman appears, then all husbands should participate, and to generate more confidence, we should go with our partners, take them. If she is a little embarrassed, if she is a little shy, the husband should be sitting there to accompany her for the doctor to explain (Men’s FGD 2)
Following from the theme of distrust in mid-level providers, we found that community members recommended more rigorous training of local health personnel on properly performing Pap tests, preferably by gynecological specialists.
A bit more training [by specialists lasting] about two months and [community center health personnel] should be ready (Women’s FGD 1)
In contrast to community members, health personnel’s suggestions focused less on improving access to services and more on improving communication and coordination within the health system to speed up the delivery of test results and expand the scope of services. For example, several providers noted the need for better communication with NGOs, family community doctors, and traditional healers. Specifically, they noted that these actors might have existing relationships with communities that the formal health sector lacks and that they could build on to extend their reach.
What is good about CIES [an NGO], is that it moves [around to] all people in the countryside,… [and] captures patients there (Provider Interview 1)
Providers also noted recent changes in health recordkeeping and health registration that might facilitate patient follow-up and promote screening and recommended their expansion. The increasing inclusion of mobile phone numbers in health center registries was frequently mentioned, which allowed easier communication of Pap test results.
We have the patient’s phone numbers, so we [can let patients] know as soon as the results have arrived. Now that [the results] are coming out quickly, in a week they will be ready (Provider Interview 1)
Yet another strategy that we have taken is [communicating with patients]…by mobile phone (Provider Interview 2)