An Examination of Misconceptions and Their Impact on Cervical Cancer Prevention Practices among Sub-Saharan African and Middle Eastern Refugees

Of the 18 women asked specifically about the HPV vaccine, 17 did not know there was an immunization for the prevention of cervical cancer. In addition, all 18 reported that neither they nor their children had received the HPV vaccination. There was also a perception that vaccination was only for females, evidenced by a participant who stated, “You're saying cervical cancer, but how does that have to do with boys.” Despite this lack of exposure, participants expressed interest, as one stated, “All I need you to do is talk to me about it” and another, “I will have to go get the vaccine.” Past experiences with side effects following vaccination upon arrival in the United States deterred some participants from seeking out any future vaccination.

When women were asked to expound on their understanding of cervical cancer, 55% of participants were not aware of it before the focus group and some perceived it to be a new threat they had not encountered in their native country. One participant stated, “People have more fear about [cervical] cancer because it's something new…it's kind of a little bit shock,” which was a sentiment shared by another, “Back home I have never heard of someone who has [cervical] cancer” and another stated, “So common in America people are getting a lot of different cancer.” Women voiced a variety of suspected causes of cervical cancer, as one woman described aspects of life in America putting her at risk, “Sometimes we can't trust the food, medicine…even the equipment the doctors use.” Multiple participants referenced cancer as a potential side effect of birth control, as one stated, “A lot of times women…they're afraid of side effect like cancer” and another mentioned her sister's concerns, “She believes that if she take birth control, you'll bring cancer.”

Across multiple focus groups, women conveyed negative associations with pelvic examinations and pap tests, with 35% reporting an avoidance of pelvic examinations primarily due to fear. As one woman stated, “I prefer not to go for pap smear” and another, “When the doctor say that on that day you're going to have a pap smear, I was so terrified. I don't like it.” The sentiments of multiple participants were summarized by an interpreter who relayed, “in their culture or in their country, they don't do it. It's culture for them to not do it. So here they refuse to do it” and, “the reason they don't like it, the pap smear, they are shy to open the legs or put the things, the pain, the pressure.” Many participants expressed a fear of metal speculums causing local trauma, pain, or pressure with insertion, as one recounted, “When I saw the material with metal, I was scared and my heart started beating loud” and another in reference to the lack of previous exposure to speculums, “When I was in Egypt, they touch the woman with hands. She doesn't feel anything and she's quiet.” There was also uncertainty regarding the interpretation of pap test results which was detailed as a limiting factor to testing, “One time I did, and they tell me… they pretend I have cancer.” Despite this fear and confusion associated with pap tests, multiple participants reported a willingness to engage in screening at the request of their physician and with encouragement of family and friends.

The fear and discomfort with physical exposure was a stronger core value than participating in gynecologic care for many participants as 45% reported avoiding care due to this concern. This was a consistent theme across multiple focus groups, as one woman highlighted, “I don't feel comfortable with that…I cannot open my legs,” another recounted her experience, “…just scared to open my legs” and another questioned, “…why should I have to go? To open my private parts?.”

Some Muslim women recalled feeling as though their physician was fearful or reticent in their interactions because of their religious garb. Referring to doctors, one participant stated, “They see us as ‘You Muslim, you covered’ and they scared…they scared to understand you to ask you more questions. Sometimes they try to shake your hand and say, ‘I'm sorry, I'm sorry’.” Traditional gestures of respect such as avoidance of eye contact were misinterpreted by U.S. health care providers to be a lack of engagement in health care conversations. Multiple participants referenced this behavior in particular. One stated, “That eye to eye contact, when we respect people we don't look them like this,” and another reported, “Africa culture, when you talk to someone, especially us, woman, we have to respectful talk to us, we have to put our eyes down” and another stated, “People maybe they might think, like, you bad.”

Women described the challenges of having an open dialog with friends and family as a reflection of their cultural norms. One participant stated, “Everybody in Africa are secretive” and another noted, “When we come from Africa, like, there's a lot hidden inside of us, but we can't say it, because of the culture.” One woman stated clearly, “I don't think I comfortable to talk about it or to show our body.” Despite these cultural restraints, some participants expressed their desire for transparency and vulnerability. They did, however, feel that they lacked the tools to do so with their daughters, as one stated, “Sometimes I want tell her something but I don't know how to say” and another reported, “We feel shy we don't talk about it like parents and child like that.”

One woman stated, “Absolutely. I would prefer, obviously, someone who is a woman.” In emergency settings, which were perceived to be male dominated, women voiced concerns regarding gynecologic-specific care and reported refusal of high acuity care from male providers. Male physicians were also perceived to be a barrier to pap testing in an outpatient setting. When asked what potential barriers they faced in general, one participant stated, “If there was a male doctor.” Even though participants had a strong preference for female physicians, some reported discomfort discussing gynecologic issues with anyone aside from their husband. In contrast, one participant stated, “It's about hospitality. As long as you smile at them and as long as you're being nice and welcome. They have no problem. Male, female, any race.”

Even with the use of interpreters, many participants were concerned about the accuracy of translation, privacy regarding shared health information, and variations in dialects. Across all focus groups 37% reported these limitations impacted their care. Some participants also referenced a desire to have providers from their country of origin, as one woman stated, “So when you see your own people speaking through your own language, you building trust.” Despite this, some reflected on the fact that shared language does not equal shared culture and even with providers fluent in their native language, cultural barriers can limit interactions.

Of the 53 participants, 32 statements were made referencing the U.S. health care system's emphasis on preventative health and the ways U.S. health care providers impact access to care. Some participants did not receive or value preventative gynecologic care, including cervical cancer screening on arrival to the United States. Examples of common sentiments regarding pap tests include, “In my country, we don't use it… We don't have those things,” along with, “Pap smear tests or the mammogram or the breast cancer test, um, it's something honestly I felt it's a big deal over here…where I used to live or where I come from, people go when they feel pain” and, “The doctors office called us and said, pap smears. I said, ‘Why should I have to do, why I don't have a problem. Why do I need pap smears?’.” Some participants reported a dearth of screening while in refugee camps, and on arrival to the United States, their initial exposure to pap tests was in pregnancy. “We don't know it. You think about when you done with babies, you done. Don't go to the doctor.” Another woman stated, “I'm not having a baby, I don't have a husband. Why should I go open my private to the doctor?,” with a similar sentiment shared by another, “She cannot imagine any material go inside, only when she gets delivery. After that she doesn't like anything go in.”

Many participants reported watching YouTube videos and seeing posts on Facebook and discussing what they learned with their friends. Across multiple focus groups, women reported their children relayed health information they learned in school, “Our kids are like our teachers now.” Physicians were seen as a trustworthy source of information as one stated, “I trust the doctor that if I ask a question, he would sit and explain it to me very well.” After discussing the importance of gynecologic care, one participant expressed her motivation to not only make appointments for her daughters but also for herself as she and the interpreter stated, “I didn't talk about before. Now I know I need to” and “I think we all need to do appointments.”

Nearly 75% expressed interest in improved health education materials. Various responses included, “Even though the doctor explains, it would be nice to kind of give them a brochure to talk more information about it so they're able to understand it more,” and another stated, “There are a lot of women who have the same, similar issues, and having a space like this to talk about the problems that they have with feminine health would be good.” For mode of delivery of information requests included, “do it in social media, Facebook and WhatsApp and send for everybody,” “I'm a visual learner, so I think a picture would be nice,” “If you give us pictures it could be helpful” and “video and book.”