Qualitative assessment of attitudes toward cervical cancer (CC) screening and HPV self-sampling among African American (AA) and Sub Saharan African Immigrant (SAI) women

Abstract

Objectives::

Despite the availability of preventive methods for cervical cancer (CC), uptake has been low among African American and Sub-Saharan Immigrant (AA/SAI) women. The purpose of this study was to understand AA/SAI women’s values and beliefs of CC screening and explore willingness, acceptability, and concerns related to the HPV self-sampling method for CC.

Design::

Thirty AA/SAI women participated in one of six focus groups, each lasted 60–90 min, and were held over Zoom video conferencing. The sessions were audio-recorded, transcribed verbatim, and checked for accuracy by research staff prior to data analysis. Transcripts were content analyzed by two qualitatively trained research staff. NVivo software was used for data management and analysis.

Results::

The average age of participants was 33.67 ± 9.03, more than half were not married (53.3%), and less than half reported having health insurance coverage (46.7%). Participants included 16 AA and 14 SAI. Three main themes emerged from data analysis. (1) Beliefs and values related to CC Screening, (2) perceived barriers to attending CC screening, (3) recommendations to motivate regular CC screening. In addition, three factors emerged in the discussion on the HPV self-sampling method: confidence in ability to self-sample for CC, willingness to use HPV self-sampling kit, and result delivery.

Conclusions::

This study identified a variety of reasons for the disproportionately low utilization of CC prevention services among AA/SAI women. Multidimensional approaches including educational and community engagement programs for this population could improve CC screening uptake and adoption of HPV self-sampling among AA/SAI women.

Cervical cancer (CC) is the fourth most common cancer among women worldwide and the leading cause of cancer-related deaths among women in developing countries (Ferlay et al. 2010). Nearly 93% of CCs could be prevented by screening and human papilloma virus (HPV) vaccination (National Center for Chronic Disease Prevention and Health Promotion 2014). The Papanicolau (Pap) test screens for abnormal cells that may develop into cancer and the HPV test screens for the HPV that causes these cellular changes. HPV vaccination helps prevent infection with the HPV types that cause most CCs (National Center for Chronic Disease Prevention and Health Promotion 2014). In spite of the availability of preventive technology such as the vaccination and screening, Black women are still disproportionately affected by HPV and CC, resulting in a much higher incidence and mortality of CC, with incidence rates of 9.2 and mortality rates of 3.6 per 100,000 compared to 7.1 and 2.1 per 100,000 for Caucasian women (American Cancer Society 2019). The difference in cancer incidence may be attributable to numerous complicated and multifaceted reasons, which reflect social and economic disparities, and cultural differences that affect cancer risk factors, as well as differences in access to high-quality health care, more than biological differences (Ward et al. 2004; DeSantis et al. 2016). Increasing appropriate and timely CC screening engagement among Black women can significantly decrease CC morbidity and mortality.

Substantial immigration has led to a significant increase in the U.S. Black population (Odedina et al. 2011). Sub-Saharan African immigrants (SAI) to the U.S. contribute to this increase with more than 2 million people living in the U.S. in 2018 (Capps, McCabe, and Michael 2012). Significant heterogeneity exists between and within native-born Blacks (African Americans [AA]) and Black immigrants such as SAI groups. There are differences between these groups with respect to culture, beliefs, socio-economic status, dietary patterns, and genetics that could affect occurrence of cancer and other diseases (Medhanie et al. 2017). Insights into commonalities and differences in the health beliefs, cultural factors, religious beliefs, and barriers to healthcare among Blacks can be used to develop interventions to improve health outcomes and reduce disparities suffered by Blacks.

The cancer incidence for Black immigrants is difficult to estimate in the U.S. because documentation of country of origin/birth is incomplete in the Surveillance, Epidemiology, and End Results Program (Medhanie et al. 2017). Available national data do not reflect incidence rates specific for SAI due to data aggregation in which SAI females are reported as part of the total U.S. Black female statistics. Lack of disaggregation of data makes it difficult to identify sub-group differences between native-born Blacks (AA) and immigrant Blacks such as SAI.

SAI women migrate from countries with high prevalence of risk factors for CC, high rates of high-risk HPV infection, and low HPV vaccination rates (Forney-Gorman and Kozhimannil 2015; Vaccarella et al. 2017). The high prevalence of CC risk factors translates into a high burden of CC in Africa as well as a heightened risk for potential CC cases among women who emigrate to the U.S. from Africa (Forney-Gorman and Kozhimannil 2015). The meta-analysis by Bruni and colleagues (Bruni et al. 2010) reported regional-adjusted HPV prevalence among Sub-Saharan African women was estimated at 33.6%, 19.6% and 17.4% in Eastern, Western and Southern Africa, respectively. Despite the high HPV prevalence in Sub-Saharan Africa, HPV vaccination coverage rates in this region are reported to be among the lowest (1.2% among 10–20-year-old females) in the world (Bruni et al. 2016).

The U.S. Preventive Services Task Force recommends CC screening with a Pap test every three years for average risk women aged 21–29 years. Women aged 30–65 years may choose either co-testing with HPV and Pap test every 5 years or Pap test alone every 3 years or HPV test every 5 years (United States Preventive Services Task Force 2018). While routine screening for CC with the Pap and HPV tests are ideal preventive methods, HPV testing alone is valuable because it offers better reassurance of low cancer risk compared to Pap test screening when testing is conducted at the same intervals (Huh et al. 2015).

Despite efforts to increase CC screening among Black women, screening disparities persist. Studies among Black women have shown that limited knowledge, fear of screening result, length of residence in the U.S., embarrassment, cultural and religion factors, discomfort with the procedure (Tsui et al. 2007; Adegboyega, Aleshire, and Linares 2017; Adegboyega and Hatcher 2016; Akinlotan et al. 2017), lower socio-economic status, cost, inadequate or lack of health insurance (Nolan et al. 2014; DeSantis et al. 2016), lack of access to screening services, negative past health care experiences, patient–provider’s relationships, lack of provider’s gender concordance and mistrust of the health care system (Ince-Cushman et al. 2013; Hurtado-de-Mendoza et al. 2014; Nolan et al. 2014 are barriers to CC screening uptake.

The recent changes in screening guidelines have the potential to reduce CC burden due to the opportunity available for women to collect their own sample (self-sample) for HPV unlike Pap test, which is clinician collected. The HPV self-sampling allows women to collect their own cervicovaginal sample with a swab, brush or a lavage-like device, and the samples can be submitted for HPV DNA testing (Mullins, Scalzo, and Sultana 2014). The HPV self-sampling can reach women who do not have access to clinic-based Pap screening or are uncomfortable with clinician collected Pap test (Huh et al. 2015; Viviano et al. 2017). Women’s compliance with HPV self-sampling is 2.14 times higher than Pap test (Racey, Withrow, and Gesink 2013). The HPV self-sampling method increases participation in CC screening and has high acceptability among diverse populations due to the ease of self-sampling (Castle et al. 2011; Kobetz et al. 2011; Racey, Withrow, and Gesink 2013; Anderson et al. 2018; Molokwu et al. 2018). Previous studies have demonstrated the acceptability and ease of HPV self-collection (Kobetz et al. 2011; Anderson et al. 2018). However, some barriers to self-sampling have been identified among women globally, including the ability to perform the self-sampling correctly, fear of self-harm, lack of confidence in test accuracy, and concerns about self-sampling replacing gynecological visits (Howard et al. 2009; Berner et al. 2013; Nishimura et al. 2021). HPV self-sampling has not been approved or recommended for CC screening in the U.S. but several developed countries have begun integrating self-sampling into their national CC screening programs (Arbyn et al. 2012; Smith et al. 2014; Arbyn and Castle 2015 Researchers are examining women’s willingness and acceptability of HPV self-sampling to understand strategies to employ when this method is approved for use in the U.S. The purpose of the current study was to explore AA/SAI women’s values and beliefs of CC screening, willingness, acceptability, and concerns related to the adoption of the HPV self-sampling method for CC to leverage the advantages of HPV self-sampling as a CC screening strategy. Understanding the perspectives of AA/SAI women will be useful for future HPV self-sampling programs for other high-risk populations if and when this screening strategy is approved for use in the U.S.

Methods

Sample and eligibility criteria

The study utilized non-probability sampling (convenience sampling). Women age 18–65 years, English speaking, who self-identified as AA or SAI, and lived in Lexington, KY were eligible to participate. Women with a self- reported history of a total hysterectomy and/or CC were excluded.

Recruitment and setting

Research staff recruited eligible women from the community between February and December 2020 using approved study flyers, advertising at religious gatherings and social organizations and word of mouth. All research procedures were approved by the Institutional Review Board (IRB # 53544) prior to research commencement. We made all participants aware of their rights to withdraw at any stage during the research process, as CC discussion can be a sensitive topic. Women were consented and invited to participate in one focus group session. The current study included AA/SAI women. The SAI women were included with the AA women because both groups are high risk and less likely to get regular screening.

Data collection

Six focus groups of 5–6 women were held over Zoom video conferencing, each lasting approximately 60–90 min. The groups were facilitated by the first author (AA) and sessions were guided with a semi-structured interview guide and appropriate probes developed based on the aims of the study and previous literature in this area. The interview guide included topics on CC screening beliefs, challenges of CC screening, description of the HPV self-sampling kit, and willingness to use HPV self-sampling kit. (See Supplementary Material for the semi-structured interview guide). The facilitator opened each focus group session with a description of the purpose of the focus group and then posed open-ended semi-structured questions using the interview guide and appropriate probes. The first part of the discussion focused on CC screening, in the second part, the facilitator introduced and explained the procedure of HPV self-sampling and read the instruction on the ‘Just For Me’ HPV self-sampling kit made by Preventive Oncology International Preventive, Cleveland Heights, Ohio). We presented a description of the HPV self-sampling kit and the components (brush, tube, labels) of the self-sampling kit were shown to all women during a Zoom videoconferencing meeting.

All sessions were audio recorded via Zoom recording. After each focus group session, women completed a short sociodemographic questionnaire via REDCap. To assess willingness to use the HPV self-sampling kit, the women were asked; ‘Would you be willing to do an HPV self-collection if provided with a kit to collect your sample?’ The response was yes, no, don’t know. All women were offered $15 gift card as an incentive for their time.

Data analysis

The tape-recorded sessions were transcribed using a transcription software and reviewed for accuracy by research staff. NVivo software was used for data management and analysis. Another author (AD) began the line by line coding of the transcripts, affixing codes to each text segment. The first author (AA) then worked with (AD) to refine and define the codes, eventually developing a preliminary codebook, which allowed standardization of the content analysis. The codebook underwent an iterative procedure to refine the codes and identify emergent themes. In addition to the standardization of the codebook, several steps enhanced the rigor and transferability of the data collection and analysis. First, we employed member checking; a subset of women were contacted to verify findings based on participant experiences with what was discussed during the focus group (Speziale, Streubert, and Carpenter 2011). Second, independent transcript coding by two researchers enhanced verification of themes and an audit trail ensured reproducibility of the findings (Speziale, Streubert, and Carpenter 2011). Research team members paid attention to similarities and differences among and between AA/ SAI women. The basic description of demographic information for the sample was summarized using IBM SPSS Statistics for Windows, Version 26.0. Armonk, NY.

Results

Participant characteristics

The study population included 30 AA/SAI women who participated in one of six focus groups. Descriptive characteristics are presented in Table 1. Participants’ mean age was 33.67 ± 9.03 years. Over half were not currently married (53.3%), over half were AA (53.3%), and less than half reported having health insurance (46.7%).

Table 1.

Demographic characteristics of the sample N = 30.

	N	%
Age Mean ± SD	33.67± 9.03
Marital status
Married/partner	12	40
Separated/divorced/widowed	2	6.6
Single/never married	16	53.3
Education
Some college	2	6.7
College	9	30
Graduate	15	50
Missing	4	13.3
Insurance
Yes	14	46.7
No	5	16.7
Missing	11	36.7
Ethnicity
African American (AA)	16	53.3
Sub-Saharan African immigrant (SAI)	14	46.7
Employment
Student	13	43
Work full time	12	40
Retired/unemployed	5	16.6
Willingness to use HPV self-sampling
Yes	22	73.3
No	3	10
Don’t know	5	16.7

Themes

In line with the interview guide which was designed based on the main aim of the study, three main themes emerged from data analysis from the first part of the focus group (1) beliefs and values related to CC Screening, (2) perceived barriers to attending CC screening, (3) recommendations to motivate regular CC screening. In addition, three themes emerged in the discussion on the HPV self-sampling method: confidence in ability to self-sample for CC, willingness to use HPV self-sampling kit to collect sample, and result delivery. Table 2 summarizes the themes and concepts identified from focus group analyses.

Table 2.

Summary of emergent themes and concepts from discussion on CC screening.

Themes	Concepts
1.Beliefs and values related to CC Screening	Screening is perceived as being very important and contributes to overall health
2.Perceived barriers to attending CC Screening
2a. Inadequate Knowledge	Overall limited CC screening knowledge;
2b. Conservative Culture and Upbringing	Private parts should not be exposed to other people, shyness, invasion of privacy
2c. Lack of perceived need for screening due to wellness	Nonchalant attitudes towards self-care, prioritizing care of others, do not want to find anything that may otherwise not have caused any problem
2d. Religious beliefs and prayer	Non-vulnerability to cancer because of prayers and faith.
2e. Access is key	Access and socio-economic factors may impact CC screening uptake.
2f. Trust	Low trust in health care providers and the historical racial discrimination in the health care system
2g. Interpreter roles	Concern about the accuracy of relayed information and confidentiality.
3. Recommendations to motivate regular CC screening	Raise awareness using multipronged culturally sensitive approaches.   Improve access and financial support.   Leveraging family and community connectedness.

Beliefs and values related to CC screening

We found that participants saw great value and importance in CC screening. Several women agreed that CC screening should be embraced and considered a very valuable preventive measure that could contribute immensely to improvement in the quality of life and overall women’s health. For example, one woman stated ‘I believe CC screening is needful for every woman, especially when you are over 40 or moving close to menopause. It also helps in determining your status in a very good time, which is really a tool for us to be able to manage any future crisis before they get to the peak or the extreme, in which things will really go out of hand.’ [Participant 1, grp 3, AA]. Some women mentioned that sexually active women should take this more seriously. Another perspective discussed by the participants was that CC screening facilitates early detection, which would bring about a reduction in health care-related expenditures and tax deductibles. For example, one woman said ‘it’s important because it’s a preventative measure to catch something before it gets worse, [reiterated by all participants in the focus groups] to find out early than wait before it’s too late, especially for people who are highly sexually active.’ [Participant 2, grp 2, AA].

Perceived barriers to attending CC screening

Even when participants value and know the importance of CC screening, certain barriers still make it difficult to engage in timely screening practices. This theme reflects the varied reasons that may prevent women from engaging in CC screening. Identified barriers included inadequate knowledge, conservative culture and upbringing, lack of perceived need for screening due to wellness, faith, and interpreter’s role.

Inadequate knowledge

In all the focus group sessions, it was evident that women had inadequate knowledge. While all participants had heard of CC screening, there was evidence of a lack of in-depth knowledge of screening guidelines. For example, one woman stated, ‘Lack of knowledge of the procedure and fear of the unknown, many people live with this uncertainty, they will say, I will rather not find out, what I don’t know will not kill me.’ [Participant 4, grp 3, SAI]. Most participants across the different groups reiterated this sentiment. In general, women described that AA/SAI community has limited CC screening knowledge; however, they rarely described themselves as being uninformed. Women discussed that inadequate knowledge fuels the fear of the unknown and engagement in CC screening. All participants expressed interest in learning more about CC screening.

Conservative culture and upbringing

Participants’ conservative culture was a barrier to CC screening. SAI women with the belief that their private parts should not be exposed to other people especially a male health care provider mostly discussed this idea. For example, one woman who spoke about privacy during CC screening said ‘some think it might be an invasion of privacy, you know, open up your private part’ [Participant 1, grp 1, SAI]. Similarly, another woman indicated that it’s all about shyness ‘… ..the process of stripping naked in front of a stranger or somebody … .’ [Participant 3, grp 1, AA]. Many women discussed how their backgrounds and upbringings could contribute to the feeling of violation of privacy.

Lack of perceived need for screening due to wellness

Participants expressed that AA/SAI women do not engage in CC screening because of the misconception that there is no need to seek health care and wellness especially when there are no obvious symptoms. The participants also expressed that women tend to prioritize the care of other members of their family and have nonchalant attitudes towards self-care. ‘Women tend to ignore themselves, we’re so focused on seeing and making sure that everybody else is taken care of.’ [Participant 2, grp 2, AA]. Another woman observed, ‘I don’t have any symptoms, there is no sense in going to wake the sleeping dog’ [Participant 3, grp 2, AA]. Most women felt that there was a limited motivation for preventive screening, as women do not want to engage in screening that may unveil any findings that may otherwise not have caused any problem.

Religious beliefs and prayer

Participants expressed the belief that the AA/SAI community has a strong belief in God. Women discussed that, sometimes, some people believe in their non-vulnerability to cancer because of their prayers and faith. For instance, one woman stated, ‘I think it’s the thought of it can’t be me, like it will never be me. It can be anyone else but me, that sense of always feeling like you’re special, or maybe because of your prayers or what not.’ [Participant 4, grp 3, SAI]. Another woman emphasized, ‘we tend to believe God for everything.’ [Participant 2, grp 2, AA].

Access is key

Even though it was agreed that CC screening is important, access and socio-economic factors may affect CC screening uptake. Many participants shared this sentiment with one woman, ‘It is very essential for every woman to go through the screening…. Financing it may be an issue as not all women have insurance.’ [Participant 2, grp 5, AA].

Another woman stated, ‘it boils down to knowledge and resources and just knowing if you have those resources or how to get a Pap test.’ [Participant 2, grp 2, AA].

Trust

The lack of trust in the current health system, which could result in discriminatory experiences, was another barrier discussed among women. The women discussed low trust in health care providers and the historical racial discrimination in the health care system, For example, one woman stated, ‘other factors could be racism, like institutionalized racism… …the health care system hasn’t been favorable for people who look like me, especially like with some of the experiences that we had, historically, and contemporary experiences.’ [Participant 2, grp 5, AA]. Another woman noted ‘lack of Black people’s trust in health care providers due to insensitive treatment.’ [Participant 3, grp 2, AA]. One woman shared her experience, ‘it was really difficult when I got a couple of pap smears done here. I did not feel comfortable with the doctors. I thought they were a little too insensitive.’ [Participant 4, grp 3, SAI].

Interpreter’s role

Several women expressed concerns about the accuracy of information that the interpreter may communicate with the provider on their behalf. There was also concern about the confidentiality of information discussed during health care encounters. This was particularly relevant for women who have a language barrier and speak English as a second language. For example, one woman noted, ‘If you don’t speak English, you are going to depend on an interpreter, there is concern about your information not been appropriately conveyed to the doctor and also fear of a third party getting to know your information…. your confidential information.’ [Participant 4, grp 5, SAI].

Recommendations to motivate routine CC screening

Through the focus group data, we identified recommendations that could be adopted to motivate AA/SAI women to engage in routine and timely screening. Creating and raising awareness using multipronged culturally sensitive approaches is an important step in increasing CC screening among AA/SAI women. ‘Having and adopting culturally sensitive approach (e.g. matching gender of health care provider with client for consultations)’ [Participant 2, Grp 1, AA].’… establishing trust in health care givers and the health system, if you have somebody that you really trust, and that is well knowledgeable about it, you’ll be very confident to talk to them.’ [Participant 5, Grp 1, AA]. Women also believed that using social media is another way to promote CC awareness. ‘We really need to do something, some small message on WhatsApp, everyone has WhatsApp. Everyone has Tick tock, everyone has Instagram or Facebook.’ [Participant 3, grp 6, SAI].

Improving access and if possible providing financial support for those in need through subsidized or free screening would motivate women to have regular screening. As one woman noted, ‘….once they know that this thing is free, and it’s for their own good and for their own benefit, they will do it.’ [Participants 3, Grp 4, SAI]. Another woman emphasized the need to provide awareness and access, ‘….going into the communities and talking to women as well as actually providing them with the opportunity to have the procedure done.’ [Participant 2, grp 5, SAI].

Leveraging family and community connectedness through family, spouses, and partners’ involvement in CC screening prevention and control and the use of peer led education were recommended as strategies to reach women in the community. One woman explained, ‘Like for Black women specifically, they probably go to a church with more Black people, it will be good to have other Black person spreading the awareness to them.’ [Participant 4, grp 4, AA]. One woman emphasized the role of sharing with others, ‘whenever women have the opportunity to gather and really openly talk about their health and their reproductive health, I think we need to talk to our friends and neighbors about it and say, well, I’ve had my screening, I hope you have had yours too.’ [Participant 5, grp 6, AA].

Many participants suggested that having life testimonials by survivors will encourage women and put a face on the disease. One woman stated, ‘maybe have somebody who has had CC, and explain, let that individual explain the importance of their screening, what they would have done different if they would have gotten checked sooner.’ [Participant 3, grp 5, AA].

In addition, several women emphasized the role of religious organizations and the need to engage religious leaders, ‘our churches can play a big role, because as Africans we know, we have faith, we believe in God. So we can use our churches to give access to people, the information to make people know about it, we can get some flyers, we can have some information session.’ [Participant 4, grp 5, SAI].

Focus group discussion on HPV self-sampling

In the second segment of the focus group discussions, the moderator (AA) did a brief introduction of the HPV self-sampling kit and showed the kit to participants. Although participants could not handle the kits because the focus groups were held via Zoom video conferencing. She provided a detailed explanation of the different parts of the kit and a thorough description for use. Pictorial representations were shown when necessary. The following themes emerged from the focus group data that were in relation to the HPV self-sampling adoption as an alternative for getting a Pap test. Table 3 summarizes the themes, concepts, and exemplar quotes identified from focus group analyses.

Table 3.

Summary of focus groups discussion on HPV self-sampling: emergent themes, concepts, and exemplary quotes.

Themes	Concept	Exemplar quotes
1. Confidence in ability to self-sample	a. Need for supervision due to previous medical history.	‘I don’t want to do it myself. I would like to go to a healthcare provider who knows my history, I have had complications. So I don’t want to miss anything. So I wouldn’t be confident.’ [Participant 1, grp 3, AA].
	b. Concerns about wrong results and errors.	‘Looks like there’s room for a lot of user errors especially because its straight like stick.’ [Participant 3, grp 5, AA].
		‘What if I don’t do it right, and then they get the wrong results.’ [Participant4, grp 3, SAI].
	c. Need for self-sampling modeling.	‘I would prefer to see someone use it so as to learn to do it correctly.’ [Participant 1, grp 1, SAI].
		‘Seeing examples. I want to see other people’s results to know if the self-sampling is reliable. I would not want to do something that caused more harm to me. If it’s a new thing.’ [Participant 2, grp 2, AA].
		‘It will be important to have mass awareness, proper education and advocacy… …using educational materials.’ [Participants 1, grp 3, AA]
	d. User friendly and easy to use.	‘It looks pretty straight forward to use.’ [Participant 5, grp 2, AA].
2. Willingness to use HPV self-sampling kit	Detailed instructions	‘If I don’t have any other alternative, to use to get a sample, then I just need to be careful not to hurt myself with it.’ [Participant 1, grp 6, AA].
		‘May be fine with appropriate precautions and labels assuring confidentiality.’ [Participant 1, grp 4, AA].
	Concern about being used as a guinea pig	‘I think a lot of medical studies have just been done kind of willy nilly on black African American women.’ Participant 4, grp 4, AA].
	Cost	‘If it’s free of charge and the benefits are known, people will be willing to use.’ [Participant 2, grp 5, AA].
	Undecided about using the kit	‘Open to either self-sample or clinic except for the waiting time at clinic and transportation period – ‘well, I’m in between.’ [Participant 3, grp 2, AA].
3. Result delivery	Preference of mode of delivery will depend on whether result is positive or negative.	‘It depends on the outcome i.e. the result itself – negative result is easier and can be shared even by mail or text message.’[Participant 2, grp 2, AA].
	Positive result will require appropriate follow-up	‘It depends on my result, if I’m positive, I would like to be called in, sit in front of a professional doctor to explain exactly what that is to me.’ [Participant 3, grp 4, SAI].
	Negative result will bring relief	‘It’s like a new lease of life’ and ‘prompt a change in attitude towards personal health care.’[Participant 2, grp 2, AA].
		‘A positive result could lead to self-accusation and blame. A negative result would encourage people to be more careful and seek more preventive measure in order to stay healthier.’ [Participant 3, grp 4, SAI].

Confidence in ability to self-sample

Several women discussed their preferences for having sample collected at a health facility or clinic. Most participants had the impression that the procedure for self-sampling may require some form of competencies and skills that they do not have. Additionally, most did not feel confident that they will be able to correctly collect the sample by themselves; they feared that they may make a mistake. In addition, women that had preexisting medical conditions and history perceived a need for supervision. However, in spite of some of the stated concerns, few participants would prefer self-sampling, if provided proper instruction, because this offers the privacy that they value. Most of the participants were not familiar with the self-sampling kit before the discussion session. Participants had varied impressions about the appearance of self-sampling kit. Some felt that it looked funny with a brush tip, some thought it will be uncomfortable to use, may inflict pain or injury, and could be easily contaminated. These concerns fueled fear and lack of confidence to self-sample among these women. A few of the participants however felt that the kit looked user friendly and easy to perform. Although some would rather that they see someone else use it so they can learn how to.

Willingness to use self-sampling kit to collect sample

During the group discussions, participants’ opinions in this regard were almost split in half i.e. about 50:50. However, responses to the question on willingness to use HPV self-sampling showed that 73.3% were willing to use self-sampling kit and 16.7% were undecided. Several participants discussed willingness with certain conditions. Some of these conditions included; inclusion of detailed explanatory instructions, the opportunity to have a confirmatory test if needed, inclusion of appropriate precautions and labels assuring confidentiality, and will be willing to use if there is no other option. Those who were unwilling or undecided about self-sampling expressed the fear of not collecting sample correctly right, sampling being uncomfortable or painful, sample contamination which may lead to infections or unintentional injuries and concerns about the maintenance of specimen integrity. Of note, one woman expressed personal reservations about being used as the guinea pig, since this is a new method. However, a few women discussed that if the kits are provided free or financially subsidized, it will provide access and save a lot of clinic waiting and appointment time. Participants expressed their willingness to mail in their samples back to the laboratory for appropriate testing and analysis especially at no extra cost.

Result delivery

Participants agreed unanimously that preference for mode of result delivery will depend on the result, whether it is positive or negative. A suggested method of result dissemination is that used for COVID-19, in which a negative test result is shared by e-mail and a personal text message for a positive test. An e-mail should not be used for a positive result because there will be a need for counseling and health care provider intervention. Several participants believed that receiving direct communication from a health care provider who can provide appropriate counseling would be most appropriate. Participants suggested that results should include the explanatory meaning of the result, follow-up plans, and appropriate follow-up appointment. The women suggested other methods to receive test results such as using pass-coded log-in to an app or a website. Participants generally responded that a negative result would bring lots of relief while a positive result would bring a lot of apprehension.

Discussion

In this study, we assessed women’s values and beliefs of CC screening and explored willingness, acceptability, and concerns related to the HPV self-sampling method for CC among a sample of AA/SAI women who took part in focus group sessions. A number of important findings emerged from the data that have implications for planning and implementation of screening strategies to reduce the disproportionate burden of CC screening among AA/SAI and other at-risk women. Less than half of the sample (46.7%) reported that they had a current health insurance, 16.7% reported no insurance, and 11 participants did not provide health insurance information. Financial issues can play an important role in whether or not women are screened for CC (American Cancer Society 2020). Women with lower incomes and those without health insurance are less likely to be screened (DeSantis et al. 2016). CC screening is available to underinsured or uninsured women through the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). This program provides breast and cervical cancer screening to women without health insurance for free or at very little cost (American Cancer Society 2020).

We found a consensus on the value and importance of screening among the women during the focus group discussion. All participants were aware of the role of screening in preventing CC as well as early detection and the need to follow screening recommendations. The women identified the role of sexual activity as an important link to CC; however, there seems to be a knowledge gap about screening guidelines. CC screening guidelines and the information on risk factors for CC screening should be important components of public awareness and education to promote screening engagement among all eligible women. Educational programs and awareness should emphasize the recent changes to CC screening recommendations (e.g. beginning screening at age 21, 3 year screening intervals, co-testing with HPV every 5 years), the causal link between HPV and CC, risk factors, and role of HPV vaccination in CC prevention, to increase overall knowledge and preventative behavior among women.

Participants described barriers and recommendations to promote screening that were consistent with the existing literature. Our findings confirmed previous research among AA and SAI women in cancer screening (Adegboyega, Aleshire, and Linares 2017; Nolan et al. 2014; Adegboyega and Hatcher 2016; Akinlotan et al. 2017). However, we identified that AA/SAI women may be culturally conservative and feel that their privacy is violated when being examined given the physical posture associated with CC screening procedures. Providing opportunities for the choice of a female provider may empower women and alleviate the shyness and sense of violation of privacy among these women. Patient–provider gender concordance influence utilization of cancer screening positively (Ince-Cushman et al. 2013; Malhotra et al. 2017). A California study conducted in a mixed-payer outpatient healthcare setting reported that screening completion was positively associated with patient-provider gender concordance for mammography and CC screening (Thompson et al. 2014).

Another key finding was how the role of a professional medical interpreter could be construed as negatively affecting communication and confidentiality. Provider’s ability to explain, listen, and empathize can have an overpowering effect on patient satisfaction and experience of care (Patel et al. 2021). However, a patient’s limited English proficiency may preclude providers from communicating effectively because they have to communicate through a medical interpreter [in person, or via remote (video or telephone)]. The use of professional interpreters is associated with improvements in overall healthcare of patients and allow for better communication between patients and providers, resulting in reduced disparities in healthcare services, and increased satisfaction among all those involved in the clinical encounter (Karliner et al. 2007).

In particular, SAI women with limited English proficiency should be reassured of the role of the medical interpreter, confidentiality, and professionalism. Interpreters should adhere to ethical principles including client confidentiality, demonstrated proficiency in the language to be interpreted, ability to interpret effectively, accurately, and impartially, both receptively and expressly (Smith and Dent 2018; Hunt 2016). This finding has implication for health care organizations to ensure immediate and reliable access to medical interpreters, and for health care providers to standardize the regular use of interpreters (Zurca et al. 2017).

In addition, we found that medical mistrust and health care discrimination influence the uptake of CC screening. This was not a surprising finding; research has established that medical mistrust affects health care utilization (LaVeist, Isaac, and Williams 2009; Armstrong et al. 2013; Kolar et al. 2015). Researchers should continue to work collaboratively with health care providers and policy makers to dismantle racism and other forms of social and economic exclusion in order to decrease mistrust and begin engendering trust (Jaiswal 2019). There is a need to cultivate environments and relationships that do not require people to use medical mistrust as a coping mechanism against stigma and discrimination (Jaiswal 2019).

Developing and implementing programs that incorporate screening recommendations for women may improve CC screening engagement among AA/SAI women. AA/SAI families should be targeted for CC screening and education programs via social media, faith-based organizations, and community organizations to reach as many women as possible. These avenues should promote discussions on sensitive issues related to CC screening that is not normally discussed among AA/SAI families and emphasize health-seeking behaviors to promote early detection and better prognosis. Using alternative channels to raise awareness and deliver health information, and to find means of exposing women to alternative sources of support, may be an effective strategy to reach individuals without a usual source of care or lack access to medical care (Zhang et al. 2019). These programs should leverage social support and encouragement of family and significant others to promote CC screening.

In addition, research shows that engaging peer educators (also referred to as promoters, community health workers, lay health workers, or natural helpers) in health promotion can lead to the adoption of health behaviors (Paskett et al. 2011; Studts et al. 2012; Shelton et al. 2017). To ensure that respect and confidentiality are maintained, trained peer educators that are indigenous to the community and understand the unique cultural issues and barriers that women may experience in accessing screening may help facilitate women’s involvement in their own care by providing culturally appropriate support and link to community resources. Peer education has been successfully used in the implementation of different prevention programs. For example, it has been used in HIV and AIDS prevention and control (He et al. 2020). Its success in HIV/ AIDS has prompted its adoption in other health promotion programs.

The barriers and concerns shared among women during the focus group discussions are similar to those previously reported in the literature (Howard et al. 2009; Berner et al. 2013). Consistent with other studies, willingness and acceptability of HPV self-sampling varied among participants. Some participants were open to the idea while others were ambivalent toward self-sampling. These mixed findings suggest the need for proper health education and enlightenment before the implementation of an HPV self-sampling intervention among AA/SAI women. In order to ensure broader acceptability, we recommend building trust and confidence in the safety, ease of use, confidentiality, and reliability of result. Researchers and programmers who intend to use self-sampling method for screening should consult with community groups to understand barriers and concerns about using HPV self-sampling and garner appropriate information to incorporate into self-sampling interventions to ensure acceptability before the implementation. It is important to ensure the clarity of instructions for self-sampling and provide detailed steps for collection using graphics and videos. Another concern among participants was the potential for harm during sample collection, reassurance should be provided to allay this fear of self-harm.

This study assessed the acceptability of a particular type of brush device (Just for Me) for HPV self-sampling. The acceptability may have been influenced by the type and appearance of device; however, it is difficult to determine how much impact this had on acceptability because the women in this study did not have the opportunity to compare this device with other types of currently available devices. There are different types of devices that can be used for HPV self-sampling. These devices differ in appearance and functionality (Bishop, Katz, and Reiter 2019). Future research should work with women to identify characteristics of their preferred device type and consider this during intervention development to promote acceptability and willingness to use.

Women expressed the need for support following a positive result. Researchers and interventionists should have resources and follow-up information available for women who test positive for high-risk HPV.

Strengths and limitations

Despite the rich insight provided by this study, there are limitations that need to be taken into account when interpreting findings. Many participants spoke from their own perspectives and their knowledge of their community. However, this was a convenience sample of younger women with high educational attainment; the findings from these focus groups may not be generalizable to all AA/SAI women. Older women with lower educational attainment may have different perceptions and barriers to screening. In addition, participants were not provided the opportunity to handle or use the HPV kit to complete self-sampling. However, for illustrative purpose, women were provided in-depth description of how to use the kit and show the kit over Zoom. Interview sessions were based on a hypothetical situation asking about willingness to use the HPV kit if provided.

Conclusions

This study provided evidence that AA/SAI women continue to experience barriers to CC screening which may deter routine and timely screening. Interventions should focus on addressing these barriers by incorporating recommendations from the target community. HPV self-sampling shows promise as a viable strategy to increase CC screening among AA/SAI women who do not have access to and do not engage in routine screening. However, appropriate information and education should be provided to empower women to be able to perform appropriately. Future research should provide actual devices to participants for use to evaluate acceptability based on experience with using the HPV self-sampling device. Findings from this study can help inform educational programs targeted at minority women, with the goal of eliminating CC screening disparities.