Factors influencing repeated decisions to decline cervical cancer screening among women living with HIV in Jos, Nigeria: a qualitative study

This qualitative study of 27 women living with HIV in Jos, Nigeria, reveals that despite recognizing the severity of cervical cancer, repeated decisions to decline screening are driven by multilevel barriers—including misinformation, logistical constraints, emotional fears, and anticipated stigma—that outweigh perceived benefits, suggesting that uptake could be improved through integrated fear-reduction counseling, stigma-sensitive care, and streamlined service delivery.

The Gist

Imagine a group of women living with HIV in Jos, Nigeria. They are already taking care of their health by visiting a clinic regularly for their HIV medication. However, despite being offered a free, life-saving test for cervical cancer (a type of cancer that is much more common in women with HIV), they keep saying "no" every time they visit.

This study is like a detective story. The researchers asked these women: "Why do you keep turning down this free test, even though you know it's important?"

Here is the story of their answers, explained with simple analogies.

The Main Problem: The "Ghost" in the Room

The researchers found that the women knew cervical cancer is a scary, serious disease (like knowing a storm is coming). But, they didn't feel like they were the ones who would get hit by it.

• The Analogy: Imagine you know a house across the street is on fire. You know it's dangerous. But because your own house looks fine and you don't see any smoke, you think, "That's not my problem." Even though they are at high risk, many women felt, "I feel fine, so I don't need the test."

The Wall of "What-Ifs"

Even when the women understood the risk, a massive wall of fears and practical problems stopped them from walking through the clinic door to get tested.

1. The Fear of the Bad News (The "Cursed Box")
Many women were terrified of what the test might reveal. They thought, "If I open this box and find out I have cancer, my life is over."

• The Analogy: It's like being offered a sealed envelope that might contain a winning lottery ticket, but you are so afraid it contains a "You're Fired" notice that you refuse to open it. The fear of the result is stronger than the hope of a cure.

2. The Cost of Getting There (The "Empty Wallet")
Even though the test itself was free, getting to the clinic cost money.

• The Analogy: Imagine the test is a free meal, but you have to pay $20 for a taxi to get there, and you'll lose a day's wages if you stay late. For a woman living on a tight budget, the "free" meal isn't actually free. The cost of the taxi and the lost work time is too high.

3. The Clinic Maze (The "Lost in the Mall")
The clinic was busy. Sometimes the nurses were away, or the waiting lines were too long.

• The Analogy: Imagine you go to a mall to buy a specific item. You get to the store, but the door is locked, or the salesperson is on a break, or the line is so long you miss your bus home. So, you leave and say, "I'll come back next time." But "next time" never comes.

4. The Whisper Network (The "Gossip Chain")
Friends and family sometimes spread scary stories.

• The Analogy: If your neighbor says, "Don't go to that doctor; they just cut people open and kill them," you might believe it, even if the doctor is actually trying to save lives. The women heard stories that cancer is a death sentence, so they avoided the test to avoid hearing that bad news.

The Good News: They Want to Go!

Here is the twist in the story: Almost all of these women actually wanted to get tested.
When the researchers sat down and talked to them, 25 out of 27 said, "Yes, I will do it next time!" They just needed the right push.

How to Fix the Door

The study suggests that to get these women through the door, we need to remove the obstacles, not just shout at them to "be healthy."

• Turn off the Scary Lights: Instead of saying, "If you don't do this, you will die," doctors should say, "This is a quick check to keep you safe and give you peace of mind."
• Build a Shortcut: Make the test happen right there in the HIV clinic without long waits. If they are already there for their HIV meds, the cancer test should be a quick stop on the same trip, not a separate, confusing journey.
• The Friendly Reminder: Instead of a text message that gets ignored, a friendly phone call from a nurse saying, "Hey, we're expecting you for your check-up today!" works wonders.
• Fix the Wallet: Help with the cost of the taxi or give them a small stipend so the trip doesn't cost them their daily bread.

The Bottom Line

These women aren't refusing help because they don't care. They are refusing because the path to getting help is blocked by fear, money, and confusion. If we clear the path and make the process gentle and easy, they are ready and willing to walk through.

Technical Summary

1. Problem Statement

Women living with HIV (WLHIV) face a six-fold higher risk of cervical cancer compared to HIV-negative women due to immunosuppression and persistent oncogenic HPV infection. Despite World Health Organization (WHO) recommendations for regular screening (every 3–5 years starting at age 25) and Nigerian guidelines recommending screening regardless of age, uptake remains critically low in sub-Saharan Africa. In Nigeria, specifically among WLHIV, screening rates are suboptimal (e.g., 81.6% had no prior Pap testing in a Jos-based study). While general barriers to screening are documented, there is a lack of evidence regarding the specific multilevel factors driving repeated decisions to decline screening among WLHIV who are already engaged in HIV care. Understanding why women consistently refuse screening despite repeated offers is crucial for closing the prevention gap.

2. Methodology

• Study Design: An exploratory qualitative study using semi-structured, in-depth interviews.
• Setting: The AIDS Prevention Initiative in Nigeria (APIN) Clinic in Jos, Plateau State, Nigeria, between September and December 2024. This is a large, integrated HIV treatment facility offering free cervical cancer screening (VIA and Pap smear) as part of routine care.
• Participants:
  • Sample Size: 27 women living with HIV.
  • Inclusion Criteria: Aged 21–65 years, confirmed HIV diagnosis, residing in Plateau State, never previously screened for cervical cancer, and documented as having repeatedly declined screening offers (at the index visit and at least one prior visit).
  • Exclusion Criteria: Cognitive impairment, inability to communicate in English or Hausa, or acceptance of screening at the index visit.
• Data Collection:
  • Interviews were conducted in private rooms, lasting 30–60 minutes, in English or Hausa.
  • Interviews were audio-recorded, transcribed verbatim, and translated into English.
  • Participants received financial reimbursement for transport and time (₦10,000–₦15,000).
• Analytical Framework:
  • Theoretical Models: The study utilized a dual-framework approach:
    • Health Belief Model (HBM): To analyze intrapersonal determinants (susceptibility, severity, benefits, barriers, cues to action, self-efficacy).
    • Social Ecological Model (SEM): To analyze interpersonal, institutional, and community-level influences.
  • Analysis Method: Deductive and inductive thematic analysis using ATLAS.ti (v25.0.1), following Braun and Clarke's six-phase framework. Two independent coders resolved discrepancies through consensus.
• Ethical Considerations: Approved by the Jos University Teaching Hospital Health Research Ethics Committee and the University of Arizona IRB. Written informed consent was obtained.

3. Key Contributions

• Focus on "Repeated Decline": Unlike studies focusing on general non-uptake, this study specifically targets women who have been offered screening multiple times and consistently refused, providing deeper insight into persistent behavioral barriers.
• Dual-Theoretical Application: By integrating HBM and SEM, the study maps how individual cognitive processes (e.g., fear, perceived risk) interact with systemic and social contexts (e.g., clinic flow, community stigma) to create a "perfect storm" of deferral.
• Contextual Nuance: It highlights the specific dynamics within an integrated HIV care setting in Northern Nigeria, distinguishing between barriers that exist despite free screening services (e.g., indirect costs, fear of results) versus those related to service delivery.

4. Key Results

Demographics:

• Mean age: 45.5 years.
• 70.4% married; 59.3% self-employed.
• 92.6% (25/27) expressed willingness to screen in the future during the interview, despite their current refusal.

Health Belief Model (HBM) Findings:

• Perceived Susceptibility: Often low or ambiguous. Many women believed they were not at risk because they were asymptomatic ("I don't feel anything in my body"). Only a minority linked susceptibility directly to HIV status.
• Perceived Severity: High. Women recognized cervical cancer as a severe, fatal disease causing social isolation and financial ruin. However, this high severity paradoxically fueled avoidance due to fear.
• Perceived Benefits: Recognized (early detection, peace of mind), but frequently outweighed by barriers at the point of offer.
• Perceived Barriers:
  • Knowledge Gaps: Misconceptions about the procedure (confusing it with vaccination) and eligibility.
  • Emotional: Intense fear of positive results and the procedure itself.
  • Financial/Logistical: Transport costs, lost income, and the "indirect cost" of returning for results or follow-up treatment.
  • Institutional: Long wait times, staff unavailability, and confusing clinic navigation.
• Cues to Action: Identified as phone calls, consistent health talks, and provider encouragement.
• Self-Efficacy: Dynamic; strengthened by faith and provider education but weakened by institutional unpredictability.

Social Ecological Model (SEM) Findings:

• Interpersonal: Social networks were double-edged. While some relatives encouraged screening, others conveyed fatalistic views ("cancer means death") or discouraged screening if asymptomatic.
• Institutional:
  • Facilitators: Free service, respectful provider communication, and reminders.
  • Barriers: Fear-mongering provider language (e.g., "If you don't do this, you'll die"), long waiting times, and disjointed clinic flow (e.g., women leaving after picking up HIV meds without proceeding to screening).
• Community:
  • Stigma: Strong association of cancer with death and HIV-related stigma.
  • Misinformation: Beliefs that screening is a waste of money or that traditional remedies are superior.
  • Awareness: Low general awareness of cervical cancer in the community.

5. Significance and Implications

• Paradox of Severity and Avoidance: The study reveals that high perceived severity does not automatically lead to screening; instead, it can trigger avoidance behaviors driven by fear and fatalism.
• Systemic vs. Individual Barriers: Even when screening is free and integrated into HIV care, indirect costs (transport, time) and service delivery inefficiencies (waiting times, staff availability) are primary drivers of repeated refusal.
• Actionable Recommendations:
  1. Fear-Reduction Counseling: Shift provider communication from fear-based messaging to supportive, educational approaches that demystify the procedure.
  2. Streamlined Clinic Flow: Implement "one-stop" mechanisms to reduce waiting times and ensure women do not leave the clinic before screening.
  3. Targeted Reminders: Utilize phone calls (preferred over texts) and consistent provider invitations as cues to action.
  4. Community Engagement: Deploy culturally tailored messaging in faith-based and market settings to address misinformation and normalize screening.
  5. Future Research: The authors suggest evaluating HPV self-sampling and screen-and-treat strategies to further reduce logistical and psychological barriers.

Conclusion:
The study concludes that repeated screening decline among WLHIV is not a simple lack of knowledge but a complex interplay of low perceived susceptibility, overwhelming emotional and logistical barriers, and institutional friction. Addressing these requires moving beyond mere availability of free services to creating a stigma-sensitive, efficient, and psychologically supportive care environment.