HPV knowledge, screening barriers and facilitators, and sources of health information among women living with HIV: perspectives from the DC community during the COVID-19 pandemic | BMC Women’s Health

Sociodemographic characteristics

As presented in Table 1, FGD participants included WLH between the ages of 35 and 66 years old. Half (50.0%) of the women interviewed had some college or technical school, and a half (50.0%) were receiving disability benefits. The majority (87.2%) of the women were residents of the District, representing Wards 8 (40.6%), 7 (15.6%), 1 (12.5%), and 5 (also 12.5%). Wards 7 and 8 have the lowest socio-economic status, and the highest unemployment level [25].

Table 1 Characteristics of women living with HIV (N = 39)

Almost all of the WLH indicated that they were currently insured (94.4%) and had a usual source of care (91.7%). A quarter (25.6%) of the women indicated that they had a history of cervical cancer or hysterectomy. As it relates to their cervical cancer screening history, 94.4% indicated that they have ever had a Pap test in their lifetime, and 77.7% indicated that they had a Pap test in the last 12 months.

Overview of key themes

A visual/graphical representation of the key themes, raised during the FGD sessions by WLH, is presented in Fig. 1.

Fig. 1
figure 1

Frequency of themes shared by FGD participants on cervical cancer and HPV prevention knowledge, screening barriers and facilitators, and sources of health information. a Cervical cancer and HPV risk factors. b Cervical cancer and HPV prevention. c Barriers to cervical cancer screening. d Facilitators to cervical cancer screening. e Usual sources of health information (prior to the COVID-19 pandemic)

Based on the six FGD, four thematic categories emerged (Table 2).

Table 2 Key themes and representative quotes from focus group discussions

Cervical cancer and HPV knowledge

Specifically in terms of their general knowledge of cervical cancer and HPV, most of the women accurately identified the risk factors for cervical cancer citing lifestyle behavior such as smoking and having unprotected sex (see Fig. 1a). They also recognized that having HIV and not getting Pap tested as recommended increases their risk for cervical cancer (“With HIV, I believe that we are more prone to infections so there is more chance of getting the cervical cancer”). Prevention methods that were identified by the women included safe sexual practice, healthy eating, exercising, and getting the HPV vaccine (see Fig. 1b). A few of the women shared that they did not think cervical cancer was preventable.

While the participants conveyed an adequate knowledge of cervical cancer, many did not know about HPV. Some of the women mentioned that they either had never heard of HPV or had heard of it but had no additional knowledge beyond that. A few of the women expressed that they were only familiar with the term “HPV” because they had recently been exposed to the HPV vaccine advertisements through billboards, radio, and television but that they did not realize that the HPV was sexually transmittable (“I don’t remember being told that it was transmitted from sex, this is the first [time] I’ve heard it”). Cervical cancer screening knowledge was also low among our participants. The women could not explain what the Pap test is and what it entails; e.g., some women incorrectly associated the Pap smear with the general testing for STDs (as opposed to the identification of cell changes or abnormal cells in the cervix). It was also unclear to our participants as to when a first Pap smear should be initiated: some mentioned that it should be initiated upon a woman’s first menstrual cycle. Finally, although our participants knew that cervical cancer screening guidelines differed for WLH, many were unsure of the specific guidelines.

Barriers and facilitators to cervical cancer screening

When prompted about barriers to cervical cancer screening (see Fig. 1c), women in our study expressed being less likely to get screened due to their lack of knowledge about cervical cancer (“There’s very little information that puts out there for us to learn about it”), other competing priorities (such as having to take care of their family), not remembering about the screening, and the inability to go to their usual check-ups due to the COVID-19 pandemic. Because of the COVID-19 pandemic, they voiced that they did not feel safe going into their provider’s office unless it was for an emergency (“Um, going into the office right now for Pap smear and stuff like that is very dangerous, so we really need one you can do at home.”). Some even expressed that if it was not offered by their provider, they would not request the screening unless they were experiencing abnormal symptoms.

Screening facilitators identified (see Fig. 1d) were being more educated about cervical cancer risk factors, and their susceptibility to HPV as a WLH: “It is easier to get some infection even if I’m taking my medicine as usual, so it’s a priority to get a Pap smear test every time required.” They also indicated that having a family history of cervical cancer, or knowing someone affected by cervical cancer made them more aware of cervical cancer and more likely to adhere to the recommended screenings (“My sister died from it. Um, I get checked up for it, but um, I had high grade lesions and, um, I have my cervix removed.”). Among the women who indicated that they received a Pap test in the previous 12 months, many directly attributed their screening adherence to direct recommendations from their provider (“I need to do that, um, but you know, it’s kind of hard with coronavirus right now. So, um, but usually I’m motivated by my doctor, the Gyno”). They mentioned receiving reminder notices (mail or calls) from their providers when they are due for their next screening (“I get a letter in the mail a week before it’s supposed to be done and then I get a notice, […] they give me an extra call cause they know I don’t like them”).

Avenues to increase knowledge and adherence to cervical cancer screening

To increase understanding of how knowledge gaps can be addressed among the target population, we asked women to share their usual source of health information, and health education preferences (see Fig. 1e). The women listed that they obtained their health information (general, cervical cancer, and HPV-focused) through various channels: in-person education with their providers, conversations with peers or in group settings such as support groups, focus group discussions for research studies, community/organization-initiated workshops (“A lot, I get a lot of my information through focus groups and studies and everything.”). Some women listed that they also obtained their health information through written literature such as pamphlets, though they also acknowledged that literacy level needs to be considered (“I think they should break it down a little more clear when they do the pamphlet for cancer”), and that some may prefer pictorial messages (“So, I think a picture’s always good for the person who can’t read as good as someone else or has problems”).

Impact of the COVID-19 pandemic on sources of health information

Due to the COVID-19 pandemic, the women noted that they could no longer have those in-person education sessions. As most of the sessions have ceased or migrated to an online platform, they had to quickly transition to and rely on remote and technology-based communication channels (“We are unsure about how long this COVID-19 thing is going on, so I’m comfortable with doing video calls and phone calls from my doctor instead of actually going into the office.”). Other forms of media channels raised by the women were the internet, television, radio, email, text messaging (“You know, the focus group and […] support groups over Zoom, and that’s a good way to get out the information, of course emails, texts because there’s a lot of women that don’t know about this.”), videos, advertisement, and social media (“Yes, social media, word of mouth, because you know, […] we’ve been together of years so, we network together so we know different things, we communicate with each other and we pass on messages and things like that. When one person tells one person, we find out together and do things together to find out things like that.”). Although some women recognized that messages that used fear tactics could work for some, they stressed that messages conveying a sense of urgency were also effective (“Not really fear, but concern, a message of concern and how, how needed it is for you to know about HPV.”).