“Black Women Don’t Always Put Our Healthcare First”: Facilitators and Barriers to Cervical Cancer Screening and Perceptions of Human Papillomavirus Self-Testing Among Church-Affiliated African American Women

Abstract

Background: African American women are at greater risk for cervical cancer incidence and mortality than White women. Up to 90% of cervical cancers are caused by human papillomavirus (HPVs) infections. The National Institutes of Health (NIH) co-developed HPV self-test kits to increase access to screening, which may be critical for underserved populations. Purpose/Research Design: This mixed methods study used the Theory of Planned Behavior to examine attitudes, barriers, facilitators, and intentions related to receipt of cervical cancer screening and perceptions of HPV self-testing among church-affiliated African American women. Study Sample/Data Collection: Participants (N = 35) aged 25–53 participated in focus groups and completed a survey. Results: Seventy-four percent of participants reported receipt of cervical cancer screening in the past 3 years. Healthcare providers and the church were supportive referents of screening. Past trauma and prioritizing children’s healthcare needs were screening barriers. Concerns about HPV self-testing included proper test administration and result accuracy. Conclusions: Strategies to mitigate these concerns (e.g., delivering HPV self-test kits to the health department) are discussed.

Keywords

cervical cancer disparities African American women HPV self-testing theory of planned behavior community-engaged research

Introduction

African American women are 41% more likely to be diagnosed with cervical cancer, and twice as likely to die from cervical cancer, compared to White women.^1–2 Cervical cancer mortality rates among African American women in the US are as high as those observed in sub-Saharan Africa.^3–4 The median age of a cervical cancer diagnosis among African American women is 51.²

Almost all cervical cancers are caused by human papillomavirus (HPVs) infections.⁵ Yet, cervical cancer is highly preventable through regular screening, specifically with use of Papanicolaou (Pap) and HPV testing, which are conducted via a gynecological exam that swabs the cervix. Among African American women, rates of cervical cancer screening in the past 3 years were comparable or slightly higher (75%–84%) when compared to White women (65%–83%).^6–7 However, these cervical cancer screening rates are below the targeted goal of Healthy People 2030 (84.3% compliant with national cervical cancer screening guidelines),⁸ and disparities in morbidity and mortality persist for African American women. Possible mechanisms through which cervical cancer disparities among African American women may be perpetuated include low rates of physician recommendations for cervical cancer screening,^9–10 low rates of Pap and HPV co-testing,^7,11 delays in receipt of medical care (e.g., until presence of abnormal symptoms),¹² and low rates follow-up after abnormal Pap tests.¹³

Many African American women also have limited access to regular cervical cancer screening as a result of socioeconomic factors (e.g., limited health insurance; access to care).^14–15 Mistrust of medical systems, due to pervasive mistreatment of African American communities, is also linked to reduced healthcare utilization and nonadherence with cervical cancer screening guidelines.^7,16 Additional barriers include physical or sexual trauma histories, as well as experiences of racial discrimination, which have all been found to be linked to lower rates of cervical cancer screening.^17–18

New medical advances, such as HPV self-test kits,¹⁹ can increase convenience of screening and reduce potential discomfort in discussing personal matters with healthcare providers. These advances may be of key importance in increasing access to cervical cancer screening, especially with underserved populations. A self-administered HPV test developed by the Preventative Oncology International and the National Institutes of Health (NIH) was found to be reliable and effective in detecting HPV.²⁰ HPV self-testing programs have been piloted with racial/ethnic minorities, including African Americans in the US,¹⁹ with studies demonstrating high acceptability.^21–24 HPV self-testing may increase screening access and engagement among underserved African American women. For example, a systematic review of 16 randomized trials among underserved, predominantly African American women found that 24% of women returned their mailed HPV self-test kits compared to 10% of women who attended their clinic-based screening.²⁵ Although researchers have expressed skepticism about potential for HPV self-testing (e.g., proper use of the test, injuring themselves),²³ HPV self-testing continues to be a key strategy of interest for increasing access to screening among underserved populations.^19,21

Partnerships with trusted, community-based organizations, such as African American churches, may be a strategy to increase reach of cervical cancer education and access to cervical cancer screening and HPV self-testing. African Americans have the highest levels of religiosity and church attendance among all racial/ethnic groups.^26,27Additionally, past research has found that African Americans tend to endorse high trust in health information received from their church compared to other settings.^28–29 Many African American churches also have great potential to sustain intervention efforts, given many have established health ministries.³⁰ To our knowledge, however, no studies have examined perceptions of HPV self-testing among church-affiliated African American women.

Theoretically-guided research examining cervical cancer screening and/or HPV self-testing among African American women is also highly limited. The Theory of Planned Behavior (TPB) has been used extensively as a guide to develop health behavior survey instruments and to test efficacy of health screening interventions with African Americans.^31–32 The TPB, with a focus on attitudes, normative beliefs, control beliefs, and intentions, has been proven to predict increases in the uptake of health behaviors (e.g., cancer screenings, HIV testing).^32–33 Previous studies have examined TPB constructs related to receipt of cervical cancer among minorities.^34–36 For example, Marlow and colleagues found that low perceived risk due to sexual inactivity, beliefs that screening was unnecessary without symptoms, and difficulty finding time for an appointment were associated with not being up-to-date on cervical cancer screening.³⁶ However, to our knowledge, only one TPB-guided study has been conducted in the past 10 years,³⁶ and the proportion of African American participants has often been low (e.g., 33%).³⁵ Furthermore, none of these studies have focused on church-affiliated populations.

Although not guided by TPB, some cervical cancer intervention studies, have been conducted in African American faith-based settings.^37–40 These interventions demonstrated that cervical cancer education, patient navigation services, and use of text messaging were safe, feasible, and may be effective in increasing knowledge, influencing normative beliefs, as well as screening uptake. However, there remains a need for further development and refinement of culturally-tailored, novel interventions to reduce gaps in cervical cancer screening among African American women, as supported by calls by the NIH/National Cancer Institute. Furthermore, use of a theoretical framework, such as the TPB, to understand and promote beliefs and intentions related to HPV self-testing may improve effectiveness and impact of these community-based cervical cancer interventions. The present study used a mixed methods approach to explore TPB factors related to receipt of cervical cancer screening and HPV self-testing among church-affiliated African American women, along with possible appropriate church-based strategies to promote uptake of screening and self-testing.

Methods

Participants

Five focus groups were conducted at four African American churches in the Kansas City metropolitan area. Eligibility criteria for the current study included: (1) self-identified as African American/Black and female, (2) aged 25–55, (3) attended church at least monthly or used community outreach services at least four times per year, and (4) no history of a hysterectomy. The final sample consisted of 35 African American women. The age range for participants (25–55) was selected based upon age recommendations to receive cervical cancer screening per United States Prevention Services Task Force guidelines⁴¹ and because the median age for a cervical cancer diagnosis among African American women is 51.²

Study Procedures

Participants were informed of this study through flyers, church bulletin announcements, word-of-mouth, and announcements at meetings of a community advisory board, made up of representatives from faith, academic, and health organizations. Churches from which participants were recruited varied in denomination, congregation size, and geographical location to ensure a diversified, church-population sample. The research team met with interested churches to provide an overview of the project. A lead contact from each church was identified, and focus group date(s) were set with the churches. Up to 12 participants were recruited for each focus group. At focus group events, participant eligibility was confirmed and verbal informed consent was received. Eligibility criteria was verbally confirmed with interested individuals prior to administration of the survey, which was completed prior to focus group discussions. Of note, the lead contact at each respective church was informed of the eligibility criteria and therefore, nearly all women who presented to participate were eligible. Fewer than five women who presented to participate were ineligible due to having a history of a hysterectomy or being outside the age range.

Five focus groups were conducted, with a total of 35 participants (range of 5–10 participants per group), for which a saturation of findings (e.g., no new information received during focus group discussions) was achieved. Data were collected between January and February 2020. Each focus group discussion lasted 2 hours and was held in the respective participating church locations. To enhance confidentiality of participants’ comments, the focus groups were offered only to eligible participants who provided informed consent, agreed to keep the focus group discussion comments confidential (obtained in the consent process), and registered in advance to attend. Participants used pseudonyms to ensure anonymity in the transcription of focus group data and data analysis. Table tents with the selected pseudonym were placed in front of each participant. Participants were reminded at the beginning and throughout each focus group discussion to always use pseudonyms when referring to participants or their comments.

The focus group discussions were led by the first author and elicited information on behavioral, control, and normative beliefs related to cervical cancer screening; past receipt and experiences of cervical cancer screening (e.g., quality of communication with medical providers, comprehensiveness of information provided, accessibility of screening, and affordability).

The discussions also focused on strategies that could increase uptake and follow-up on cervical cancer screening in church settings, such as HPV self-testing. When discussing HPV self-testing, an actual self-test kit, developed by the NIH and Preventative Oncology International,²⁰ was passed around to participants to provide them with an opportunity to personally examine the kit. Additionally, the testing process and cost of the HPV self-test kit were described. Focus group participants provided their general reactions and comments regarding benefits of and barriers to using the self-test kit, along with cultural considerations in promoting its use with African American church-affiliated women. At the end of each focus group, the first author summarized key areas of discussion and emergent themes with participants to enhance credibility of preliminary findings.

Discussions were audio recorded and transcribed for coding purposes. Participants also completed a brief survey prior to the start focus groups to collect information on participant demographics and beliefs/behaviors related to cervical cancer screening. Surveys took approximately 30 minutes to complete. Following focus group participation, participants were compensated US$30 for their time in addition to being provided with a meal valued at US$10 per person. All study materials and procedures were approved by University of Missouri-Kansas City's Institutional Review Board.

Quantitative/Survey Measures

Demographics

All participants were asked to report demographic information including age, gender at birth, marital status, and church affiliation/years as church member. Other items included education level, health insurance coverage, and approximate monthly income.

Religiosity

Two items from the Duke Religiosity Index (DUREL) were used to assess religious behavior.⁴² One question assessed church attendance (1 = never to 6 = more than once a week), and one item assessed frequency of prayer, meditation, or bible study (1 = rarely or never to 6 = more than once a day).

Trauma History

Studies suggest that a history of trauma is linked to reduced engagement in preventative healthcare, such as receipt of a Pap test.¹⁷ Lifetime personal exposure to physical abuse and sexual abuse was assessed with two respective questions (0 = no or 1 = yes).

Tobacco Use and Alcohol Use

Participants were asked to report on tobacco use and alcohol use. Tobacco is a risk factor for cervical cancer, and alcohol use may increase risk through reduced inhibitions and increased engagement in risky sexual behavior.⁴³ Tobacco use and binge drinking (e.g., more than four standard drinks per day) in the past 6 months were assessed (0 = never to 5 = daily or almost daily).

Past Cervical Cancer Screening, Diagnoses, and HPV Vaccination Uptake

Two questions assessed receipt of cervical cancer screening, in one’s lifetime and in the past 3 years (0 = no to 1 = yes). A history of an abnormal Pap test, a history of an HPV diagnosis, and cervical cancer diagnosis were also assessed (0 = no to 1 = yes). Participants were also asked regarding receipt of the HPV vaccine, and if all three doses were received (0 = no to 1 = yes).

Cervical Cancer Knowledge

Cervical cancer knowledge was assessed using 10 questions developed by the Centers for disease Control and Prevention (CDC),⁴⁴ which assessed knowledge of risk factors, curability, symptoms, and screening procedures (1 = true and 0 = false). Sum scores ranged from 0 to 10, with higher scores indicating greater cervical cancer knowledge.

Pap Smear Beliefs Questionnaire

The Pap Smear Beliefs Questionnaire (PSBQ) is a reliable and valid 25-item measure designed to assess knowledge, attitudes, and beliefs related to receipt of cervical cancer screening (e.g., having a Pap test will help me find abnormal cervical cells early, Pap test takes too much time).⁴⁵ Responses ranged from 1 = strongly disagree to 5 = strongly agree. Items were summed and ranged from 25 to 125, with higher scores indicating more positive beliefs towards receipt of a Pap test.

TPB Constructs

Attitudinal beliefs (i.e., beliefs related to cervical cancer screening) were assessed with three questions modified from a previous study.⁴⁶ For example, “Pap/HPV test is painful,” “A Pap/HPV test would make me worry” (1 = strongly disagree to 5 = strongly agree), with higher scores indicating higher negative attitudes towards cervical cancer screening. Normative beliefs (i.e., perceived support of cervical cancer screening from their referents) were assessed with four questions modified from a previous study.⁴⁵ For example, an exemplar question was, “My church community thinks it is important to get regular cervical cancer screening” (1 = strongly disagree to 5 = strongly agree), with higher scores indicating more positive support. Perceived behavioral control, or confidence in one’s ability to receive screening, was assessed through three questions (e.g., “How confident are you that you can access medical care for your next Pap/HPV test”; 1 = not confident at all to 5 = very confident), with higher scores indicating higher perceived behavioral control. Lastly, one question assessed intention to receive a Pap/HPV test in the next 3 years (0 = no to 1 = yes).

Qualitative Materials

A focus group discussion guide, informed by TPB, was used to ensure consistency in information communicated (e.g., background on cervical cancer, disparities in cervical cancer) and order/structure of questions asked of participants. For focus group questions assessing TPB and related constructs, please see sample questions included in Table 1.

Table 1.

Focus Group Discussion Questions.

Construct	Discussion question
Attitudinal beliefs	What do you expect to happen if you went to the doctor for cervical cancer screening?
Attitudinal beliefs	What is the benefit of regular cervical cancer screening for African American women?
Normative beliefs	What people, groups, or organizations would be supportive of you or other women receiving cervical cancer screening?
Normative beliefs	What people, groups, or organizations would not be supportive of you or other women receiving cervical cancer screening?
Control beliefs	What personal and/or community factors make it harder to receive cervical cancer screening?
Control beliefs	What personal and/or community factors make it easier to receive cervical cancer screening?
HPV self-testing	Would you feel confident in your ability to properly use the HPV self-test?
HPV self-testing	Would you feel more comfortable using a self-test or going to your doctor?
Interventions	What strategies or supports would help you or other women receive cervical cancer screening?

Data Analysis

Brief Survey Data

Frequencies, means, and sum scores were used to describe participant characteristics and health screening/cervical cancer screening beliefs and behaviors.

Focus Group Data

Focus group discussions were transcribed verbatim using a confidential transcription company. All transcribed data was coded and analyzed. Content analysis, specifically use of inductive and deductive approaches, was used for analysis of qualitative data.⁴⁷ This approach has been shown to be advantageous in examination of healthcare experiences as well as in exploring novel topics that have limited previous research.⁴⁸ In alignment with a content analysis approach, a codebook was used to capture thematic elements of participants’ comments in alignment with TPB constructs using the following process. First, the first author conducted “open coding” by identifying key themes, phrases, and behaviors from transcriptions and notes written during focus groups. A second coder then reviewed the first author’s coding and clarified categories, identified repetitive factors, and recommended additional themes to include. Both coders then reconciled their evaluations and focused on TPB-related themes, such as behavioral, normative, and control beliefs related to cervical cancer screening/HPV self-testing, intentions to receive cervical cancer screening, and past receipt of cervical cancer screening. Coding of the themes also included identifying acceptable educational formats and tailored ways to facilitate cervical cancer screening/follow-up (e.g., HPV self-testing) with congregants and community members in African American churches.

Following reconciliation between two research team members, the coding schema was finalized. The coding schema was comprised of TPB-guided thematic elements, which was used as the framework to review transcriptions and best understand key focus group themes. For example, facilitators of cervical cancer screening (1) that were coded included: (1a) education on importance of screening; (1b) reduction of fear/stigma; (1c) accessible, low-cost screenings; (1d) comfortable environment for screening; and (1e) supportive physician–patient relationship.

Following development of the final coding schema, two coders then reviewed focus group transcripts using this coding schema. The goal of inter-rater reliability between coders was 80%, which is the percentage agreement advised in qualitative research.⁴⁹ The first and second coder discussed discrepancies in codes and resolved disagreements. A third coder assisted in evaluation of discrepancies and recoding for areas of disagreement that were not resolved between the first two coders. Use of multiple coders and reaching consensus were used to enhance confirmability of focus group findings.

Results

Survey Results: Demographics

All participants (N = 35) were female and were an average age of 39 years (SD = 8.5, range = 25–53), as shown in Table 2. Participants had a median education of an associate’s degree or technical school training and an income of US$2001–US$3000 per month. Most had health insurance (82.9%, n = 29) and were primarily church members (91.4%, n = 32); 91.2% (n = 31) attended church weekly or more.

Table 2.

Participant Characteristics (N = 35).

	N	%
Church affiliation
Church member	32	91.4
Community member	3	8.6
Education
High school graduate/GED or less	9	27.3
Some college/Technical training	15	21.2
Associates degree (AA) or technical school certificate	8	24.2
College degree or higher	9	27.3
Health insurance
No insurance	6	17.1
Medicare or Medicaid	9	25.7
Private insurance	19	54.3
Other	1	2.9
Average monthly household income
US$0–1000	5	15.2
US$1001–2000	6	18.2
US$2001–3000	8	24.2
More than US$3000	14	42.4
Refuse to answer	2	5.7
Church attendance
Weekly or more	31	91.2
A few times a month	2	5.9
A few times a year	1	2.9
Engagement in prayer, meditation, or bible study
Daily or more	22	64.7
Weekly or more	10	29.4
Monthly or less	2	5.9
Marital status
Single, never married	14	40.0
Married	12	34.3
Divorced or separated	6	17.1
Widowed	3	8.6
Yes	33	94.3
No	2	5.7
History of cervical cancer screening (past 3 years)
Yes	26	74.3
No	7	20.0
Don’t know	2	5.7
History of cervical cancer screening (ever)
Yes	19	54.3
No	14	40.0
Don’t know/refuse to answer	2	5.7
Receipt of HPV vaccine (ever)
Yes	8	22.9
No	26	74.2
Don’t know	1	2.9
History of cervical cancer (ever)
Yes	1	2.9
No	34	97.1
History of HPV diagnosis (ever)
Yes	3	9.7
No	28	90.3
Alcohol consumption (current)
Never	25	73.5
Every few months	5	14.7
Monthly or more	4	11.7
Tobacco use (current)
Never	30	85.7
Every few months	2	5.7
Weekly or more	3	8.6
History of physical abuse (ever)
Yes	19	45.7
No	16	54.3
History of sexual abuse (ever)
Yes	11	31.4
No	24	68.6

Overall, the majority of participants reported that they had received cervical cancer screening in their lifetime (94.3%, n = 33), with 74% (n = 26) reporting they had received screening in the past 3 years. Nearly 23% of participants (n = 8) reported receipt of the HPV vaccine (ever), and 75% of those (n = 6) reported receipt of all three doses. Over half of participants (54.3%, n = 19) reported having had an abnormal Pap test (ever). Also, 9.7% (n = 3) reported they had received an HPV diagnosis (ever), and 2.9% (n = 1) reported a history of a cervical cancer diagnosis. As shown in Table 3, participants endorsed moderate levels of perceived benefits (M = 26.89, SD = 4.38) and low levels of perceived barriers (M = 10.66, SD = 4.02) to cervical cancer screening. Participants also reported low vulnerability to cervical cancer (M = 10.66, SD = 4.02). Regarding subjective norms, participants reported highest levels of perceived support for cervical cancer screening from their healthcare provider (M = 4.31, SD = 0.71) followed by their church community (M = 4.19, SD = 1.06).

Table 3.

Key Theory of Planned Behavior Constructs (N = 35).

	M	SD	Range
Cervical cancer knowledge	2.14	1.29	0–10
Pap smear belief questionnaire (PSBQ-25)	61.37	9.88	25–125
Perceived benefits	26.89	4.38	7–35
Perceived barriers	10.66	4.02	6–30
Vulnerability	6.86	2.66	4–20
Experiences	16.97	6.00	8–40
Attitudes towards cervical cancer screening
Pap test is painful	2.61	1.05	1–5
Pap test increases worry	2.18	0.95	1–5
Pap test is embarrassing	2.00	0.90	1–5
Subjective norms
Family	3.67	1.21	1–5
Partner/spouse	3.71	1.19	1–5
Church community	4.19	1.06	1–5
Doctor/medical provider	4.31	0.71	1–5
Perceived behavioral control
Confidence to receive next cervical cancer screening	4.57	1.01	1–5
Confidence in your ability to access next screening	4.54	1.09	1–5
Confidence in remembering to schedule next screening	4.49	0.98	1–5
Intention to receive cervical cancer screening in next 3 years	3.59	0.71	1–4

Focus Group Findings: Coding Agreement

Percentage agreement following secondary coding (e.g., discussion and reconciliation between coders) was 89% agreement, and 99% agreement was achieved following review by a third coder. Cohen’s kappa indicated sufficient agreement between coders (κ = 0.89, p < 0.001), which improved further after review from a third coder (κ = 0.99, p < 0.001). Moreover, established percentage agreement goals (80%) were met,⁴⁹ indicating sufficient inter-rater reliability.

Focus Group Findings: Emergent Themes

Five focus groups were conducted. Five to 10 participants participated in each focus group. Results are organized as follows: (a) TPB constructs (e.g., attitudinal [positive/negative] beliefs about cervical cancer screening, non-supportive/supportive referents of cervical cancer screening, barriers/facilitators to screening access); (b) perceptions towards HPV self-testing; and (c) consideration of cervical cancer screening promotion strategies for future faith-based interventions.

Attitudinal Beliefs

Physician-Patient Relationship and the Need for Information

The physician–patient relationship was a key theme that emerged within focus groups, with a positive relationship facilitating regular cervical cancer screening and follow-up. Positive relationships were facilitated through perceived comfort with providers as well as viewing physicians as knowledgeable. Participants noted that lack of familiarity with cervical cancer screening may evoke fear or worry. A handful of participants also expressed uncertainty regarding what cervical cancer screenings assess (e.g., what types of cancer), and expressed a desire to be informed about the goal of routine screening and what to expect from the screening process. As one participant noted:

“(My doctor) walked me, you know through the steps (of the exam) and then when I was done, she set the expectation, you can expect test results within this time, this is the way you receive them and if there’s any problem, this is the way that it will happen. So I didn’t leave with the concern of waiting for my phone to ring… I knew the timing.”

Several participants echoed this statement, stating that a thorough explanation from one’s healthcare provider prior to the exam would be helpful in addition to written materials reinforcing material that was shared.

Financial Burdens and Goal of Cancer Prevention

Several participants also noted the financial and occupational stressors that occur alongside more frequent cervical cancer screening/procedures, such as time off work, waiting at the doctor’s office, and additional medical expenses. Although no participants disclosed personal experiences with cervical cancer diagnosis or treatment in focus group discussions, one participant shared a poignant story about the preventable nature of cervical cancer:

“I learned a valuable lesson because the lady that I took care of, she was in her 30s. She had five children and she had cervical cancer. And if they would have caught it in time, they could have saved her life. But I was there at her last breath with that understanding and I was young but it stuck and it gave a memory of making sure that you’re always doing screenings and doing things that you can in an appropriate time frame because she wouldn’t be dead right now if she had.”

Stigma and Culture of Silence

Participants also noted that health, particularly sexual health, is often not discussed in the Black Community and can be taboo. For example, one participant shared the culture of silence of discussing women’s health issues within her family, “Women (were) always taught that we (were) healthy and you didn’t really think about that stuff (cervical cancer screening). My mother is 82 and she can probably count on her hand how many times she has had a Pap smear. And if you mention it, she look at you funny.” Consistent with this discussion, survey findings indicated, family was ranked the lowest compared to all other referents regarding perceived support for cervical cancer screening.

Participants also shared a need for more open communication between women in their families (e.g., mothers and daughters), given the combined fear that can arise from discussing sexual health and from possibly disclosing sexual activity. As one participant noted, “A lot of them are scared to talk to (family) if (they) found out she has been sexually active.” Participants noted that the tendency to not discuss women’s sexual health is often transmitted generationally and could contribute to a lack of awareness about cancer screening specifically and healthcare practices generally. Participants said that they wanted to have conversations with the younger generation that promote body confidence, health, and prevention of cervical cancer through regular screening.

Normative Beliefs

Participants felt that their female peers would support their receipt of regular cervical cancer screening. Despite this perceived support, they noted that these types of conversations were uncommon due to personal attitudes and social norms (e.g., personal attitudes and social norms), which contributed to missed opportunities for conversations that could serve as reminders for women to schedule screenings or follow-up. For example, one participant stated, “(Cervical cancer screening) is not something that comes up in everybody’s conversation but if you just like, oh girl, I went to the doctor the other day (…) they may think, hey maybe I need to go.”

Of note, participants’ church community was rated as the second highest supportive referent for receipt of cervical cancer screening. As one participant shared that the church “Cares about my spirit and they care about my flesh (health).”

Control Beliefs

Financial Barriers

Eighty-three percent (n = 29) of participants reported having health insurance. Nearly all participants stated that access to affordable medical care and health insurance were essential to receiving regular cervical cancer screening. Several participants discussed their past experiences in being underinsured or having limited financial resources, and that meeting basic needs, such as groceries and medications, took priority over cervical cancer screening or follow-up in those circumstances. They also commented that having to cover co-pays and meet deductibles could result in financial stress regarding to cervical cancer screening, even for insured persons.

Childcare and Prioritization of Children’s Healthcare Needs

Childcare was another frequently discussed barrier to cervical cancer screening. As one participant stated, “It is the most uncomfortable thing in the world to have your children present.” Moreover, they commented that women may prioritize their children’s healthcare over their own, “I’ve been in doctor’s offices Monday through Friday. I don’t want to go back on Monday and be in another one (for me), so I just kind of forget about it.” Participants noted that cervical cancer screening, among other healthcare behaviors, tended to be a low priority for African American women, “Black women (…) we don’t always put our healthcare first.”

Low Knowledge About Cervical Cancer

Lack of awareness and misinformation about cervical cancer prevention was common among participants. For example, several endorsed misconceptions about risk, such as “A women is not at risk for cervical cancer after menopause,” and HPV vaccination being linked to neurodevelopmental conditions, such as autism. Several also endorsed incorrect guidelines for when to begin cervical cancer screening. Only 21% (n = 4) knew that almost all cervical cancers are caused by a virus. Also, participants’ knowledge about cervical cancer and preventative practices was low (M = 2.14; SD = 1.29, Range 0–10). They acknowledged the pervasiveness of misconceptions and expressed a desire for more evidence-based information.

Medical Mistrust

Several comments made by participants were focused on medical mistrust, such as skepticism for certain medical recommendations (e.g., HPV vaccination uptake). For example, a participant shared concerns that their health information would not be kept confidential, which may be a barrier to receipt of screening:

“Even though the HIPAA is in place, then they feel like you know, my business is still gonna get spread it out. If I know somebody that works at the doctor’s office, and I come and I get seen (…) they still have access to my records. So they may find out that I have something and I just don’t want to risk that, you know.”

Trauma History

Another theme that emerged was how individuals with a history of physical or sexual trauma might be reluctant to receive screening due to the exam. Even beyond the physical exam, which participants noted is a vulnerable experience, participants expressed that the questions regarding one’s sexual health history could be a trigger for trauma survivors. As one participant noted, “If you got some trauma behind somebody asking you about your, you know, your personal area … (that) might trigger some things.”

HPV Self-Testing Perceptions

Prior to focus group discussions, few participants had heard of HPV self-testing (2.9%, n = 1). Among our largely insured sample, the majority expressed a preference for seeing a healthcare provider for HPV screening and had several concerns about HPV self-testing. Their concerns included: how to properly use the device, potential accuracy of results, cost of the test kits, kits potentially getting lost in the mail, and not fully knowing the purpose of self-test kits (e.g., detecting for a virus, not cancer). As one participant noted, “Some people will believe they gonna find out if they got cervical cancer by doin’ this.”

However, the majority of participants commented that HPV self-testing is a good option for individuals with limited access to medical care and stated that they would use HPV self-testing if they did not have access to traditional screening. One participant stated, and several echoed the following statement, “I’d rather go to a healthcare provider. Now me personally. Now if I didn’t have access to one, then I think that I would.”

Future Cervical Cancer Intervention Considerations

Overall, participants shared that the church would be an appropriate setting and trusted resource for cervical cancer education and screening intervention efforts. They also commented that promoting women’s health generally may increase engagement in educational activities. They also believed that education about HPV may increase self-efficacy in cervical cancer prevention and could reduce cancer-related fear, which could subsequently lead to increased uptake of cervical cancer screening among African American women.

Additionally, participants repeatedly suggested that use of online mediums (e.g., YouTube, podcasts), text messages, restroom fliers, and bumper stickers were key strategies for sharing HPV and cervical cancer information within faith-based settings. Participants noted that making text messages humorous, integrating images or illustrations, and facilitating a sense of connectedness could make educational information on cervical cancer more acceptable and engaging. For example, one suggestion for a text message to encourage cervical cancer screening was: “Join me, let’s set the date together.”

Participants also suggested use of personal testimonies and speakers to share cancer prevention and cancer survivorship testimonies, which may make educational information more personal and relatable. The women also suggested partnering with relevant church ministries as well as community organizations, such as Black women’s organizations, which may help maximize the impact of interventions through reaching a larger network of women. Events with churches and Black women’s organizations may promote community among women, foster dialogue about women’s health through small group discussions, and be a safe way to ask questions and receive culturally-appropriate information. One participant noted the impact of the focus group discussion on her personal decision to seek cervical cancer screening, “I think conversations like these make it easier (to receive screening) because I been putting it off for a while and now I’m like okay (…) just go ahead and knock it out.”

Discussion

To our knowledge, this was the first study to explore TPB-informed attitudes, facilitators, and barriers to cervical cancer screening as well as examine perceptions towards HPV self-testing with Midwestern, African American church-affiliated women. Rates of cervical cancer screening in the past 3 years reported by our participants (74%) were slightly lower than screening rates documented among African American women in recent national studies (75%–84% in the past 3 years),^6–7 suggesting that church-affiliated African American women could potentially benefit from increased awareness and access to cervical cancer screening.

Although long-standing and systemic barriers to cervical cancer screening among African American women remain, it is important to note that data were collected prior to the COVID-19 pandemic. The pandemic has likely resulted in unique barriers to cervical cancer screening access, such as pauses in cancer screenings, financial concerns as a result of furloughs/layoffs, and additional childcare barriers due to school closures and uptake of virtual learning, that our study was unable to capture given the timeframe of data collection.

Although this study’s sample was largely educated and insured, participants still had financial concerns about the cost of cervical cancer screening due to co-pays, deductibles, and childcare. Another key finding was that African American women in this study often put their children’s health above their own, and thereby cervical cancer screening was often less of a priority. This is a barrier that has not previously been discussed in the literature. However, research suggests that health prioritization has been linked to cervical cancer screening uptake.¹⁴ Low prioritization of cervical cancer screening is concerning, particularly given that over half of participants reported a history of an abnormal Pap test, which typically requires closer follow-up per the American Society of Colposcopy and Cervical Pathology’s guidelines.⁵⁰ Offering evening appointments and providing childcare during appointments would likely increase the accessibility of cervical cancer screening and help mitigate barriers (e.g., cost, limited childcare) among African American women. Additionally, supportive strategies, such as use of community health workers and patient portals, have been effectively used to promote healthcare engagement in underserved communities.^51–52 Ensuring quality healthcare and screening access is of the utmost importance, and consideration should be given to the use of community health workers and patient portals to ensure support and reminders for scheduling appointments for screening.

Furthermore, consistent with past research, sexual or physical trauma history was also noted as a barrier to receipt of cervical cancer screening.¹⁷ In our study, 31% of participants reported a sexual trauma history and 46% of participants reported a physical trauma history. Cervical cancer screening, specifically the physical exam, may evoke distress for women who are survivors of physical (e.g., fight, assault) or sexual violence (e.g., inappropriate sexual contact).⁵³ However, healthcare providers who are sensitive to individual trauma histories can reduce exam-related distress through simple practices, such as explaining exam procedures prior to beginning physical examination.⁵⁴ This strategy is consistent with providing trauma-informed care, which is universally recommended in medical settings to meet the unique needs of trauma survivors and seeks to increase women’s autonomy in medical settings.⁵⁴ Offering women choice and control in their healthcare (e.g., able to choose the gender of their provider), in addition to clear communication about the physical exam has been linked to reduced distress about cervical cancer screening among trauma survivors.⁵³

Moreover, partnerships between African American churches and community clinics can provide opportunities to familiarize women with clinics, healthcare providers, and patient-centered exam procedures. Given that a positive relationship with one’s healthcare provider was viewed as a critical contributor towards positive attitudes towards cervical cancer screening, directly connecting women to providers within a highly-trusted setting, such as their church, may be a strategy to facilitate medical trust and confidence and facilitate appointment follow through. Previous research suggests high trust in cancer-related information shared by the church or religious leaders among African Americans.²⁹ Delivering information from a trustworthy setting may be particularly critical for African American women with trauma histories who may face additional barriers to screening.

Medical mistrust was also an endorsed control belief among participants and is well-established in the literature as a mechanism that is consistently linked to lower levels of healthcare utilization among African Americans.¹⁶ Previous research has found that use of patient-centered communication and providing culturally-sensitive care (e.g., provider awareness of one’s own views; knowledge of other cultures’ values, historical injustices, and religiosity) may reduce levels of medical mistrust.⁵⁵ In 2013, the U.S. Department for Health and Human Services released its enhanced National Standards for Culturally and Linguistically Appropriate Services. However, few physicians are aware of these standards, and even fewer have received training in cultural competence in medical training.⁵⁶ Furthermore, community health researchers have also encouraged consideration of cultural humility, which promotes lifelong learning, self-reflection, and awareness of power differences in service of developing strong relationships with members of diverse communities.⁵⁷ Although use of cultural humility has been an ongoing effort for healthcare providers, education on diversity-related matters remains a critical gap in medical training, and strategies to better prepare healthcare providers to deliver culturally-sensitive medical care are needed. This could be offered through continuing education requirements, adapting requirements for medical residency accreditation (e.g., embedding psychologists with specialty in health equity/diversity-related issues), or by having electronic medical record prompts that remind providers to implement patient-centered communication techniques during patient care visits.

In addition, our participants preferred having a female healthcare provider. A recent systematic review found that women tend to prefer a healthcare provider who matches their sociodemographic characteristics (e.g., gender, race) for cervical cancer screening.⁵⁸ Contrary to Biddell et al.,⁵⁸ participants in this study did not express a desire for a provider of the same race. Moreover, being able to meet individuals’ provider demographic preferences is another way to offer women choice and control in the screening process, which may increase uptake and follow-through of cervical cancer screening. However, being able to accommodate provider racial preferences may be challenging, given that only 7%–11% of family medicine and OBGYN physicians are African American.^59–60 Certainly, further attention is needed to recruit a more diverse physician workforce.

Moreover, participants felt that African American churches are a highly appropriate setting for future cervical cancer education and screening interventions. Despite these viewpoints, few previous interventions have been conducted.^40,61 Church-based support may be an essential approach to increase the reach of interventions that can promote widespread cervical cancer screening and follow-up. For example, church-based support has been linked the uptake of other screening behaviors, such as mammography screening^62–63 and HIV testing.^32,64–65 Thus, garnering church-based support for cervical cancer screening in conjunction with high trust in cancer-related information²⁹ could be an important strategy to reduce the disproportionate burden of cervical cancer among African American women.

Regarding HPV self-testing, participants preferred seeing their physician for cervical cancer screening instead of using HPV self-testing, particularly if they had financial resources. Specific concerns participants had about HPV self-testing included possible improper administration of the test and accuracy of results from HPV self-testing, which suggests limited perceived control over administration of the test and its results. Although similar concerns have been previously documented among minority women,²³ these findings are contrary to past research which has reported high acceptability and possible preference for HPV self-testing over traditional screening.^21,58,66 Participants had several suggestions on how to increase confidence in using HPV self-testing, such as clearly detailing the administration procedures and taking test samples directly to the health department.

Future faith-based studies should explore strategies to increase awareness of the availability of HPV self-tests for personal screening with African American church-affiliated females as a screening option that can be done in the comfort of one’s home. Also, strategies should be explored to enhance the skills and confidence of African American females to conduct an HPV self-test. To assist these efforts, African American churches could provide a QR code in church bulletins or educational brochures that link to an online, culturally-appropriate, step-by-step instructional video on background information, completion, mailing preparation, and receipt of results of HPV self-test kits. The online instruction could also promote follow-up on needed healthcare visits and further cervical cancer screening, depending upon results. Similar approaches, such as use of a culturally-tailored mobile health application, has been found to be acceptable, effective, and well-received as a component of interventions with church-affiliated African Americans.⁶⁷ Of note, despite endorsed concerns, nearly all focus group participants said they would use HPV self-testing if they did not have access to traditional screening and the importance of the role of the church in promoting use of HPV self-testing. Community partnerships should strongly be considered in increasing the scope and reach of future interventions. Church health ministries, in particular, have the potential to sustain HPV self-testing intervention efforts.

Study Limitations

This study had several limitations. Of note, it is possible that the focus group responses were subject to social desirability biases. For example, individuals in focus groups who had differing beliefs from the majority of participants could have been likely less likely to share their perspectives. Also, the brief survey used self-report measures which could have also been subject to social desirability and memory biases. Additionally, our study was conducted in the Midwest with an African American sample that was highly religious, which limits generalizability of findings. However, the study sample was highly relevant to the research question, and the insights provided from participants could contribute to development of faith-based interventions for African American women.

Conclusion

This mixed methods study explored facilitators and barriers to cervical cancer screening among African American women from a theoretical lens and to our knowledge was the first study to examine perceptions of HPV self-testing among an African American church-affiliated sample. Although findings should be interpreted in the context of limitations in transferability and dependability (e.g., highly specific sample; data collection timeframe), many notable steps were taken throughout the research process (e.g., use of multiple coders; summarizing findings to confirm emergent themes with participations) to enhance credibility, confirmability, and overall rigor of focus group findings.

Moreover, among our higher socioeconomic sample, one in four participants were not up-to-date with national screening guidelines, and participants had limited knowledge about cervical cancer. Although more research is needed to enhance the confidence in church-affiliated women’s use of HPV self-testing and explore faith-based interventions as means of promoting clinic-based cervical cancer screening, African American churches remain an untapped intervention partner with immense potential to increase knowledge and cervical cancer screening access with African American women.

Footnotes

Acknowledgments

Special recognition Pastor Regina Morrison and Ms. Sheila Lister for their support and contributions to this project.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by University of Missouri-Kansas City’s School of Graduate Studies.

Ethical Approval

All study procedures and materials were approved by University of Missouri-Kansas City’s Institutional Review Board.

Consent to Participate

Verbal consent was obtained from participants.

Consent for Publication

Not applicable – images not included and publicly accessible data not used.

ORCID iD

Kelsey Christensen

Author Biographies

Kelsey Christensen, PhD, is an Assistant Professor of Clinical Family Medicine at University of Illinois at Chicago College of Medicine.

Alexandria G. Bauer, PhD, is an Assistant Research Professor at the Center for Alcohol and Substance Use Studies at Rutgers University.

Tacia Burgin, MA, is a Clinical Psychology PhD Student at University of Missouri–Kansas City.

Joah Williams, PhD, is an Assistant Professor in the Department of Psychology at University of Missouri–Kansas City.

Joan McDowd, PhD, is an Professor and Chair of the Department of Psychology at University of Missouri–Kansas City.

Gary Sutkin, MD, MBA, is a Professor in the Department(s) of Biomedical and Health Informatics and Obstetrics and Gynecology at University of Missouri–Kansas City School of Medicine. He is also the Associate Dean of Women’s Health.

Kymberly Bennett, PhD, is a Professor and Director of the Undergraduate Psychology Program in the Department of Psychology at University of Missouri–Kansas City.

Carole Bowe Thompson is the Project Director of the Community Health Research Group in the Department of Biomedical and Health Informatics at University of Missouri–Kansas City School of Medicine.

Jannette Y. Berkley-Patton, PhD, is a Professor in the Department of Biomedical and Health Informatics at University of Missouri–Kansas City School of Medicine and the Director of the Health Equity Institute. She also is an Adjunct Instructor in the Department of Psychology.

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