Experiences of HPV self-collection among Aboriginal and Torres Strait Islander women and people with a cervix

This study of 555 Aboriginal and Torres Strait Islander women and people with a cervix reveals a strong preference for HPV self-collection following the 2022 policy change, with 67% of those offered a choice opting for self-collection due to factors like reduced embarrassment and increased bodily control, while highlighting the critical need to ensure all eligible participants are offered a choice and supported in making informed decisions.

The Gist

Imagine your body has a very important security system designed to catch a specific type of troublemaker (a virus called HPV) before it can cause serious damage (cervical cancer). For a long time, the only way to check this security system was to invite a professional inspector (a doctor or nurse) into your home to take a look. They had to use a special tool (a speculum) to get a clear view.

For many Aboriginal and Torres Strait Islander women and people with a cervix, this "professional inspection" felt scary, embarrassing, or just too invasive. Because of these feelings, many people avoided the check-up entirely, leaving the security system unchecked.

The New Rule: "You Can Check Your Own Mailbox"
In July 2022, the rules in Australia changed. The government said, "You don't have to wait for the professional inspector anymore. You can now check your own mailbox yourself using a simple swab." This is called self-collection. The idea was to give people more control, privacy, and comfort.

What the Study Found
Researchers asked 555 Aboriginal and Torres Strait Islander women and people with a cervix about their recent experiences with these new rules. Here is what they discovered, using some simple comparisons:

• The "Choice" Gap: Imagine a menu at a restaurant. The new rules say the chef must offer you a choice between the "Chef's Special" (doctor-collected) and "DIY" (self-collection). However, the study found that in about 39% of cases, the waiter (healthcare provider) didn't even show the menu. They just brought the Chef's Special.
• Who Chose "DIY"? When people were offered the choice, two out of three (67%) picked the DIY option.
  • Why? It was like choosing to change your own clothes in a private dressing room rather than in front of a crowd. They said it was:
    • Less embarrassing: No one else had to see.
    • Less scary: They felt in control of their own bodies.
    • Less painful: No need for the uncomfortable tools.
• The "DIY" Success Rate: Among those who had a check-up since the rules changed, nearly half (46%) used the self-collection method. Some did it at home, some did it at the clinic, and some had a nurse help them hold the swab without using the uncomfortable tools.
• The "I'll Do It Myself" Crowd: Even people who usually go for the "Chef's Special" (doctor-collected) started switching to DIY. About one-third of those who usually go on time decided to try self-collection this time.
• The "Not Told" Problem: A big chunk of the people who still went for the "Chef's Special" said, "I didn't know I had a choice." About 40% of those who didn't choose DIY said they simply weren't told about the option.
• The "Confidence" Issue: Even though many people chose DIY, only about half of them felt they had been given enough information to make a smart, informed decision. It's like being handed a new video game controller and told "play this," but not being given the instruction manual. They weren't sure if they were doing it right or what would happen next if the test found a problem.

Why This Matters
The study shows that when people are given a choice and the right information, they often prefer the method that makes them feel safe and in control. For many, this "DIY" option is the difference between getting a check-up and skipping it entirely.

However, the study also highlights a glitch in the system: Healthcare providers need to be better at offering the choice. If the menu isn't shown, people can't order what they want. The researchers emphasize that for this new system to work, doctors and nurses need to actively offer the choice and explain it clearly, ensuring everyone feels confident enough to make the decision that is right for them.

In a Nutshell
The paper isn't saying one method is medically "better" than the other; it's saying that choice is the key. When Aboriginal and Torres Strait Islander women are given the option to check their own "security system" in a way that feels safe and private, many choose to do so. But to make this work for everyone, the healthcare system needs to stop assuming everyone wants the "old way" and start actively offering the new, empowering choice.

Technical Summary

Technical Summary: Experiences of HPV Self-Collection Among Aboriginal and Torres Strait Islander Women and People with a Cervix

Problem Statement
Despite Australia's National Cervical Screening Program (NCSP) transitioning to primary HPV testing and introducing "universal access" to self-collection in July 2022, significant inequities persist. Aboriginal and Torres Strait Islander women and people with a cervix experience cervical cancer incidence rates 2.1 times higher and mortality rates 2.8 times higher than non-Indigenous individuals. While self-collection was previously restricted to specific overdue groups, the 2022 policy change aimed to remove barriers by offering all eligible participants a choice between clinician-collected (speculum) and self-collected vaginal samples. However, the extent to which this choice is being offered, the uptake rates among Indigenous populations, and the lived experiences of participants regarding informed decision-making and cultural safety remained unknown.

Methodology
This study employed a cross-sectional online survey design conducted between December 2023 and April 2024.

• Participants: The analysis focused on 555 eligible Aboriginal and Torres Strait Islander women and people with a cervix (aged 25–74). From an initial pool of 11,311 consented respondents, 677 identified as Indigenous. Strict exclusion criteria were applied based on age, sex assigned at birth, cervix status, and data quality checks (excluding incomplete surveys, rapid completions, and those flagged by fraud detection algorithms like ReCaptcha scores and manual review of free-text fields).
• Data Collection: An electronic survey hosted on Qualtrics captured sociodemographic data and detailed screening practices. Questions were informed by the COM-B system and Theoretical Domains Framework.
• Governance: The study was led by a team with Aboriginal and Torres Strait Islander lived experience and leadership. Cultural governance was monitored by the Thiitu Tharrmay Reference Group, and the research adhered to Indigenous data sovereignty principles, ensuring Indigenous peoples led the interpretation and use of the data.
• Analysis: Data were analyzed using STATA v18. Participants were categorized by screening recency: "recently screened" (on or after July 2022, n=261), "previously screened" (before July 2022, n=215), and "never screened" (n=79).

Key Contributions
This paper provides the first empirical insight into the screening experiences of Aboriginal and Torres Strait Islander people since the implementation of universal access to self-collection. It specifically investigates:

1. The frequency with which the choice of collection method is offered in practice.
2. The uptake rates of self-collection versus clinician-collection within this demographic.
3. The motivations driving method selection (e.g., autonomy, fear, convenience).
4. The adequacy of information provided to support informed decision-making.
5. The specific experience of "assisted self-collection" (healthcare provider collecting without a speculum), a novel area of inquiry.

Results

• Offer of Choice: Among the 261 recently screened participants, only 58% (n=151) recalled being offered a choice of collection method. Consequently, 39% (n=100) were not offered a choice.
• Uptake and Method Selection:
  • Self-Collection: 46% (n=118) of recently screened participants used self-collection. This included 35% collecting at home, 41% in the clinic, and 24% assisted by a provider without a speculum.
  • Clinician-Collection: 51% (n=133) underwent clinician-collected sampling with a speculum.
  • Choice Dynamics: Of those offered a choice, 67% (n=101) chose self-collection. Conversely, among those who chose clinician-collection, 61% were not offered a choice.
• Motivations:
  • Self-Collection: Primary drivers included reduced embarrassment (55%), feeling in control of one's body (38%), and reduced fear (30%).
  • Clinician-Collection: Primary drivers included habit ("always had it done by a provider"), a desire for the provider to "have a look," and a belief that the provider would collect a better sample.
  • Assisted Self-Collection: Participants chose this to ensure a provider could check for abnormalities without a speculum or to ensure sample quality.
• Information Gaps: Only 55% of participants who self-collected felt they had sufficient information to make an informed decision between methods. Many expressed uncertainty about the accuracy of self-sampling or the necessity of follow-up tests if HPV was detected.
• Demographic Nuance: Participants who screened "around when due" predominantly chose clinician-collection (65%), whereas those who "left it a bit long" or had only screened once were more likely to choose self-collection (59% and 57%, respectively).

Significance and Claims
The authors claim that this study highlights a strong preference for HPV self-collection among Aboriginal and Torres Strait Islander women and people with a cervix, even among those who are regular screeners. The findings reinforce that self-collection offers critical benefits regarding privacy, bodily autonomy, and reduced trauma, which are essential for increasing participation, particularly among those who are under- or never-screened.

The paper asserts that while universal access policy exists, implementation is inconsistent, with a significant portion of eligible participants not being offered a choice. The authors emphasize that healthcare providers play a vital role not only in offering the choice but in supporting informed decision-making, particularly regarding the accuracy of self-collection and the protocols for follow-up testing. The study concludes that ensuring all eligible participants are aware of and offered self-collection, supported by culturally safe education, is a necessary step to address the persistent inequities in cervical cancer outcomes for Aboriginal and Torres Strait Islander communities. The authors modestly note that their findings serve as a benchmark for future monitoring as national campaigns (such as the 'Own it!' campaign) aim to further improve awareness and uptake.