Qualitative insights into the acceptability of self-collection for cervical screening amongst under- and never-screened groups in Australia

Abstract

Background

Since 2022, Australia’s National Cervical Screening Program has recommended that anyone eligible for cervical screening should be offered the choice of HPV testing on either a self-collected vaginal sample, or a clinician-collected sample. This choice provides the potential to address some screening barriers for under- and never-screened women and people with a cervix. In this qualitative study we aimed to understand the acceptability of self-collection for individuals from under-and never-screened groups, and its potential to improve equitable access to screening through the national program.

Methods

Fifty-five semi-structured interviews were conducted between October 2023-November 2024 with screen-eligible women and people with a cervix from the LGBTQ+ community, refugee backgrounds, Pacific Islander communities, and those with physical and/or sensory disability. Data were thematically analysed using the Theoretical Framework of Acceptability.

Results

Most participants had a positive view of self-collection and could see its benefits, particularly its capacity to increase privacy and autonomy. Self-collection was seen as beneficial for those who experienced issues related to body shyness and discomfort about being undressed in front of healthcare providers. Participants placed high value on having options for cervical screening; however, many preferred clinician-collection due to low self-efficacy in collecting a sample themselves and concerns about the accuracy of the test. Additionally, some participants with physical and/or sensory disabilities highlighted dexterity and/or mobility challenges that made self-collection difficult or the swab difficult to use. Participants agreed there was a need for community-tailored information sessions and broader campaigns about self-collection as many communities were still unaware of this option.

Conclusions

While self-collection has the potential to expand screening accessibility and may offer individual benefits, increased awareness of its availability and attention to identified barriers are needed to ensure that everyone is given true choice in the way they screen.

Background

Australia is potentially on track to become the first country to actively eliminate cervical cancer by 2035 [1]. This is due to a nationally funded human papillomavirus (HPV) vaccination program and organised, well-established National Cervical Screening Program (NCSP). At the end of 2023, 74.6% of people eligible to screen were up to date with the recommended screening in Australia’s NCSP [1]. Despite this, there are population groups within the country who have never been screened or who are under-screened (those who are not screening at regular intervals), and who are at risk of missing prevention or early detection of cervical cancer. Although there are limited data to quantify their participation in screening [2], rates of cervical cancer incidence, or related health outcomes, evidence suggests that these population groups include women and people with a cervix1 from some culturally and linguistically diverse populations; living with disabilities; lesbian, gay, bisexual, transgender, and queer (LGBTQ+); Aboriginal and Torres Strait Islander communities; and those who live in more remote or socio-economically disadvantaged areas [4].

There is a range of barriers to people from these groups participating in screening, including body shyness or discomfort at being undressed in front of healthcare providers, language barriers for those from culturally and linguistically diverse backgrounds, past negative screening experiences, misconceptions about the need for screening, out of pocket expenditure to attend appointments, limited screening services in regional and remote areas, lack of accessible services for people with physical disability, and non-inclusive service providers for trans or gender diverse groups [5, 6]. Research has also shown that unavailability of healthcare providers who are trauma-informed or understand gender diversity can also impact present screening decisions [Authors 2025, manuscript submitted for publication, under review]. Addressing these barriers is critical, as around 70% of people diagnosed with cervical cancer each year in Australia are people who were under- or never-screened [7].

Screening on a self-collected vaginal sample (self-collection) provides the potential to address some screening barriers for under- and never-screened people, as it enables privacy, is less invasive and can potentially lead to an increase in uptake of screening [8, 9]. In December 2017, the NCSP transitioned from recommending two-yearly Papanicolaou (Pap) smear testing to five-yearly HPV testing, opening the possibility of screening using either a self-collected vaginal sample or clinician-collection, as the accuracy of HPV testing to detect cervical precancer is similar on self-collected vaginal samples and clinician-collected cervical samples [10, 11]. Self-collection of a vaginal sample is a non-clinical procedure (no speculum is used) and involves inserting a small swab into the lower vagina and rotating it. This can either be done by the person being screened or a healthcare provider. Self-collection also enables flexibility for the sample to be collected at a clinic or in a home or other community-based setting. While the national guidelines support flexibility in location of sample collection, in Australia, self-collection must be ordered by a healthcare professional, which means that most eligible people still need to attend an appointment with a nurse or general practitioner to access the test [12]. Self-collection is not consistently offered free of charge in Australia [13].

When the option of self-collection became available in 2018, eligibility was restricted to those who were under- or never- screened (defined as those aged 30 + years who were never screened or at least two years overdue for screening), and who declined a clinician-collected sample [14]. Few people knew about this option as it was not promoted widely, and therefore, very few of those who were eligible used it [15]. In July 2022, NCSP guidelines were updated to recommend that anyone eligible for cervical screening should be offered the choice of HPV testing on either a self-collected vaginal sample, or a clinician-collected sample. It was believed that the widening of eligibility criteria would improve in-practice availability for those who were under-screened, and it enabled wide promotion of self-collection.

Since the change of guidelines in 2022, there has been a considerable increase in the proportion of HPV tests that are self-collected in never- and under-screened people, increasing between April-June 2022 and January-March 2025 from 2.5% to 51.0% among never screened people, and from 2.2% to 57.7% among under-screened people [16]. It is important to identify whether the availability of self-collection and this policy shift to universal accessibility is enough for under- and never-screened women and people with a cervix to access screening in an equitable way, and if not, to identify and examine community perspectives on how to optimise its accessibility among priority populations.

This article examines the acceptability of self-collection for cervical screening for women and people with a cervix from the following backgrounds: refugee or asylum seeker; LGBTQ+; living with physical and/or sensory disability; and/or Pacific Islander. These findings are one component of a broader mixed-methods study [43] that examined barriers, enablers and proposed solutions to participating in self-collection, and aimed to generate evidence about how the choice for self-collection can be implemented in ways that ensure equitable access and increased participation for under-screened and never-screened women and people with a cervix in Australia.

Methods

Data collection

We present data from 55 semi-structured interviews with people from under-and never-screened groups within Australia. An interpretive qualitative approach was used to focus on the emic perspectives and lived experiences of women and people with a cervix who were eligible for cervical screening and met the following inclusion criteria:

• Screen-eligible (i.e., women and people with a cervix aged between 25 and 74 years, living in Australia); and

  • LGBTQ+; and/or
  • self-identify as Pacific Islander; and/or
  • with physical and/or sensory disability; and/or
  • comes from a refugee or asylum seeker background.

Individuals who did not meet the stated inclusion criteria (i.e. were not women and people with a cervix between the stated age range, and/or did not meet the geographical and group classification, and/or were unable to provide informed consent) were excluded from participation.

These participant groups were prioritised as they are known to be under-screened and never-screened for cervical screening in Australia [4, 17, 18]. Additionally, those born in Pacific Island countries were known to have significantly higher cervical cancer incidence rates than their Australian-born counterparts [19].

Recruitment and interviews with participants took place between October 2023-November 2024. Members of the research team did not directly approach potential participants to participate in the study. Recruitment occurred through respected community and health service organisations with established relationships with the target communities. We prioritised organisations with ongoing, trusted engagement and relevant service provision, ensuring that recruitment pathways were appropriate and culturally aligned. Members of the research team asked identified community and health service organisations to disseminate recruitment material to potential participants through social media accounts (e.g., Facebook and LinkedIn) and the organisation’s email distribution networks. The recruitment materials included the phone number and email address of a member of the research team for potential participants to contact for information and eligibility to participate.

The semi-structured interviews took between 45 min and one hour to complete. Interviews were conducted by PJ and CB, and offered either face-to-face, online via Zoom or Teams, or by telephone. Interviews with participants from refugee backgrounds were conducted in person at a community health organisation in a regional area of Australia. This setting provided access to bilingual translators and bicultural workers who supported participant recruitment, explained the project objectives, and provided translation during interviews in participants’ languages of origin, as all participants came from non-English-speaking backgrounds. To support translational equivalence, collaborative review was conducted between the translator and the research team, including discussion of culturally specific concepts and verification that translated materials and responses accurately reflected the intended meaning.

The interviews were audio-recorded with the consent of participants in the participant information statement and consent form. At the completion of the interview, participants were given a $25 grocery voucher for their participation. The topics covered in the interviews included participants’ knowledge of HPV, self-collection, and cervical cancer; cervical screening experiences; preference for self-collection vs. clinician-collection; and solutions for making cervical screening more accessible and acceptable for under and never-screened communities. Datasets were transcribed verbatim by a professional transcriber in Australia.

A Community and Consumer Advisory Panel was formed at the beginning of the study and included women and people with a cervix with physical and/or sensory disability, from culturally and linguistically diverse backgrounds, LGBTQ+, and living in regional or remote areas. Panel members’ input contributed to the development of research tools including the interview guide and recruitment methods.

Data analysis

All data transcripts were coded in NVIVO 12 and analysed in a process of deductive analysis, focusing on the identification of recurrent patterns [20]. Two researchers (PJ and AW) developed an initial coding schema that was informed by the key domains of the study interview guides (e.g., knowledge and awareness of HPV, self-collection, and cervical cancer; perceptions of self-collection, and community solutions to increase screening). The coding of transcripts was cross-checked for consistency (PJ and AW) and revised considering emergent themes. Initial codes were analysed in detail to identify sub-themes as well as differences and similarities within and across the transcripts. Minor discrepancies were resolved through recursive discussion, during which PJ and AW compared interpretations, revisited the relevant data excerpts, and agreed on the most appropriate code. This analysis approach was iterative and reflexive, with each piece of data building on the next, to develop overall thematic concepts.

Next, a second level of coding was undertaken (PJ) and mapped to the Theoretical Framework of Acceptability (TFA) [21] to assess the appropriateness and acceptability of self-collection. The TFA model has been successfully used by members of our team in other settings to understand the acceptability of self-collection and new point of care testing [22, 23]. In the TFA [21] (see Table 1), ‘acceptability’ is examined through seven component constructs that, when taken together, can provide a comprehensive overview of possible challenges and facilitators to implementing a healthcare intervention, such as self-collection for cervical screening. This article presents findings from the second level of coding and analysis to the TFA.

Table 1.

Theoretical framework of acceptability (Sekhon et al., 2017)

TFA-Component Construct	Definition
Affective Attitude	How an individual feels about the intervention.
Burden	The perceived amount of effort that is required to participate in the intervention.
Ethicality	The extent to which the intervention has a good fit with an individual’s value system.
Intervention Coherence	The extent to which the participant understands the intervention and how it works.
Opportunity Costs	The extent to which benefits, profits, or values must be given up to engage in the intervention.
Perceived Effectiveness	The extent to which the intervention is perceived as likely to achieve its purpose.
Self-efficacy	The participant’s confidence that they can perform the behaviour required to participate in the intervention.

Ethics

The study received ethics approval from UNSW Sydney (HC230425), and two community-led LGBTQ+ organisations: ACON (RERC Reference Number 202326) and Thorne Harbour Health (THH/CREP/23/012). Signed (hard copy or electronic) consent forms were obtained from the study participants. Participants were also given the option of providing recorded verbal consent if they preferred. All participants referred to in the Results section have been provided a pseudonym to ensure confidentiality.

Results

A total of 55 women and people with a cervix were interviewed in this study. A breakdown of their priority group classification, age, and area of residence can be found in Table 2.

Table 2.

Participant characteristics

Method: semi-structured interviews	Total n = 55
Priority group classification
Refugee	16
• Burmese-speaking	11
• Arabic-speaking	5
LGBTQ+	13
• Gender identity
o Cisgender woman	6
o Transgender man	3
o Non-binary individual	3
o Other	1
• Sexual orientation
o Lesbian	3
o Bisexual	4
o Queera	4
o Other	2
People with disability	16
• Physical	10
• Sensory	6
Pacific Islander	10
• Papua New Guinean	4
• Cook Islander	4
• Other	2
Age range
25–34	20
35–44	11
45–54	15
55–64	6
65+	3
Area of residenceb
Urban	22
Regional	30
Remote	3

^aAlthough we are aware that ‘queer’ is an umbrella term that can describe sexual orientations and gender identities that are not heterosexual or cisgender, participants in this study mainly used the term to describe their sexuality

^bAreas are broadly classified into urban, regional, and remote areas based on the Australian Bureau of Statistics (2023) classification [24]

All participants were asked about their history of cervical screening and for those who had been screened, which method had been used. Forty-three participants self-reported that they had had a Pap smear or cervical screening test previously. Only two participants had undergone self-collection. Participants were next asked about their knowledge and awareness of self-collection. Twenty-nine participants stated that they had heard of self-collection for cervical screening, but for many of them, there was a relatively low level of awareness and understanding of what it entailed. For the twenty-six participants who had not heard of self-collection, and for those who had heard of it but requested more information, the interviewer gave a brief step-by step overview.

In the sections that follow, key findings are mapped to the seven constructs of the TFA, with the themes identified in the analysis presented under the corresponding construct headings. Where constructs conceptually overlapped, these intersections are acknowledged and described within the findings to maintain clarity in interpretation. Although all constructs within the TFA were reflected in the findings, perceived effectiveness and self‑efficacy emerged most prominently as areas of challenge.

Affective attitude

Affective attitude refers to how participants felt about self-collection, or how they felt their communities would perceive it. Most participants liked the idea of self-collection and valued the importance of having it as a choice in addition to clinician-collection. Key reasons are highlighted below.

Less discomfort and pain

Some participants, mainly from the LGBTQ+ community, noted that, compared to a clinician-collected HPV sample that required the use of a speculum, self-collection would be more comfortable and less painful:

I don’t like the idea of the speculum… I just never have. (Klara, bisexual)

A number of participants had had painful experiences with previous speculum exams, and thought self-collection provided a better alternative, with less discomfort:

I think there’d be a lot of people who found it painful like I have … the [speculum exam], I mean. To have something done a bit more comfortably and by yourself, yeah, I think it will increase testing numbers, for sure. (Peta, non-binary)

I had difficulty fitting the smaller speculum anyway to make collections in the past…. it’s far more comfortable to do the swab…I would still be more likely to do the procedure now with the swab. (Eliza, bisexual)

Many participants believed that self-collection would encourage more people to screen because it was less invasive and exposing:

I think it’s really good ‘cause it will definitely reduce the barrier of people being super-anxious about, yeah, like a random stranger opening them up and sticking things inside them. (Deborah, queer)

The importance of choice and agency

Having the options of either self-collection or clinician-collection was important to most participants we spoke to:

Offer choice, offer choice, offer choice. And ask the question, “What, what would you be comfortable with? How can we make you comfortable?” Because that’s just not something that’s considered. It’s usually considered: “This is how we do things.” And then it’s generally considered that we need to adapt to that. (Claire, person with physical disability)

For many participants, having choice was empowering. Some spoke about this in relation to gender and cultural norms:

…particularly in the [Pacific] Islander culture, the men are always the ones that have more power and authority over women, and there are times where men have to feel like they have to take the reins. Men have to be the head. Women are just the ones that need to submit and follow. So, I believe that women have power of choice and, you know, their own freedom, and the power to make their own decisions of what they think is important for them. (Gladys, Pacific Islander)

There was a view that offering options could help people make a decision that suited their own needs, which some felt might encourage uptake:

… everyone’s got different circumstances and it’s good that we can accommodate people… You want everyone to be doing this. So, if you give them more options, it can suit their particular lifestyle needs and their circumstances. And, you know, you may get one of these women who never wanna do it [screen] more likely to come to the doctor and do it. (Hermione, person with sensory disability)

Some participants believed that self-collection could potentially be a better option for people with a history of sexual trauma, due to having greater control over the sample:

‘Cause they’ve got control over the test and themselves, and their body, so, therefore, they’re probably, more likely to engage in that self-collection. (Kate, person with physical disability)

It’s a lot nicer to do that to yourself than it is to, you know, rely on someone else who’d be a safe person or not to trigger memories and stuff. (Eliza, bisexual)

Notably, while most participants liked the idea of self-collection, and felt it could encourage more women and people with a cervix in their communities to screen, many still preferred clinician-collection. This was due to several reasons related to the constructs of perceived effectiveness and self-efficacy and will be explored in these later sections.

Burden

Burden refers to the perceived amount of effort required to collect one’s own sample. Many participants believed that self-collection involved minimal effort, with a relatively low burden. Referring to people’s ease at learning to collect their own samples for testing COVID-19, one participant thought that most people would find self-collection of a vaginal swab equally easy:

It sounds simpler. It sounds quicker. And I think coming out of COVID, when we, we all got really, really good at doing the, the nose swab, I think it’s, it’s going to be a much easier sell than it would have been before COVID. (Vikki, person with sensory disability)

Many participants who preferred clinician-collected samples still had doubts primarily related to their own self-efficacy, which is closely related to this construct of burden. To them, while self-collection theoretically sounded quick and easy, they questioned their own capabilities in collecting their own sample.

Ethicality

Ethicality is related to an individual’s value system and for participants in this study, is related to how they felt about their own bodies, which was often influenced by culture and gender. Many of our participants, especially those from refugee and Pacific Islander backgrounds, and those who were trans or gender-diverse, described feelings of body shyness, body dysphoria, cultural taboos, and/or were generally uncomfortable being undressed in front of a healthcare provider. Some participants stated that self-collection might offer a viable alternative for people who had experienced these feelings, and for whom privacy was important:

…compared to the [clinician-collected] where you have one or two doctor to examine you and to look at you as well…That’s the hardest part…Even having a female doctor, I still feel a little bit embarrassed to do the [clinician-collected] test…[I] prefer the self-collection because you don’t have someone else to look at your private parts. (Gina, refugee background, Burmese speaking)

Intervention coherence

The construct of intervention coherence refers to the extent to which participants understand how a self-collected vaginal sample works. Most participants agreed that more awareness-raising was needed to promote the use of self-collection as many were still unclear as to what self-collection was, why it was important, how accurate it was, and how to do it. Participants were asked about the best way to raise awareness, and suggestions given included targeted and culturally-sensitive education and awareness for under- and never-screened communities; a national campaign (television and print); audio and pictorial resources; community information sessions, with interpreters if needed; and peer education. Some participants thought step-by-step instructions on how to self-collect would be beneficial for under- and never-screened communities:

I think the best way to improve that is to have information sessions so that they will understand more about it [self-collection], so they feel more comfortable in having the test… instruct us really clearly in details so, so we are more confident in doing it. (Therese, refugee background, Burmese speaking)

Participants from refugee and Pacific Islander backgrounds suggested cervical screening information that was tailored for culturally and linguistically diverse communities:

Maybe even making informational videos or just, you know, like put the pamphlets in languages and culturally sensitive information using the same, like using figures that look like Pacific Island women… It’s all about just trying to relate to the community. (Kimi, Pacific Islander)

Opportunity costs

Opportunity cost refers to the extent to which benefits, profits, or values must be given up to engage in self-collection. Some participants asked the researcher about the cost of self-collection, whether there would be an out-of-pocket cost, and whether they would still need to book an appointment with their healthcare provider to get the swab:

If I knew it was free, that would be good. (Chris, trans man)

As mentioned, self-collection must be overseen by a healthcare provider, typically a general practitioner (GP). GP visits may be bulk-billed (no out-of-pocket cost; provider receives a standard fee from Medicare, Australia’s universal health insurance scheme) or be associated with an out-of-pocket cost (if the provider/ service charges a higher fee) depending on the provider and clinic. Some participants questioned why they needed to pay to collect their own sample when there was minimal involvement of a GP:

But why do I have to go to make an appointment to my GP, to be charged, ‘cause they’re not bulk billing down here [regional area of residence] anymore, to be charged to stick a swab up my own vagina? And to justify myself for doing it myself rather than a medical nurse. (Rebecca, person with sensory disability)

Participants who lived in regional areas, in particular, voiced concerns about the lack of bulk-billing and long waiting times for GPs. They stated that these barriers may cause a person to delay screening:

And, yeah, I mean cost is always a factor, I think. Like even, even 30, 40 [dollars], like I can imagine myself being like, “Oh, that’s like I’ll put it [self-collection] off to the next appointment where I need something [else]” or something like that. (Klara, bisexual)

Perceived effectiveness

Perceived effectiveness refers to the extent to which self-collection is perceived as likely to achieve its purpose as a screening test. As mentioned, most participants across all groups generally liked the idea of self-collection in theory and felt it might encourage more people from their communities to screen; however, when asked whether they themselves would try self-collection, many indicated they still preferred clinician-collection. The primary reasons are outlined below.

Concerns around accuracy

Participants expressed hesitancies about a self-collected sample because they worried about the precision of the test in detecting HPV:

I worry that I would probably, it wouldn’t be accurate. I don’t know how to explain that. Like I don’t know what the accuracy rating for them are. (Cameron, non-binary)

One participant was concerned that one vaginal sample would not be enough to detect HPV, and this could potentially lead to complications and follow-up tests:

Is there a certain amount you need to collect or is it just a swab? It’s like the Q-tip…is that gonna be sufficient, and then whether they send it away and then it comes back negative or… And then later on you get sick…is that gonna be accurate enough, like that one test…or are they gonna say, “Oh, maybe we need to do a follow-on [up].” (Lisa, Pacific Islander).

Missed opportunities for a more thorough examination

Concerns about accuracy were also linked to the perception that a clinician-collected test was more thorough, as some participants felt that a healthcare provider could detect any problems with the cervix (or other areas):

Say you’ve got like [an] early vulvar cancer that you can’t see ‘cause you don’t spend your whole life with a mirror looking at your own bits…It’s a chance for them to see it and just check out the architecture in general, you know…So, I know it [self-collection] sounds all good ‘do it yourself’ but it’s a bit like scanning groceries at [a supermarket] to me. Who’s it really benefitting? (Meg, lesbian)

Look, to be honest, I think it’s an opportunity to check other things while they’re at it. So, I tend to think I’d probably go for, you know, the doctor doing it. (Ellen, person with sensory disability)

Self-efficacy

Self-efficacy refers to the participant’s confidence in collecting their own vaginal sample, and was a key factor identified by many participants that impacted their acceptability of self-collection. Many participants described low self-efficacy and reported that they would not feel confident collecting a vaginal sample themselves:

I don’t trust myself doing it by myself, I think…I’m just, again, concerned that I might not do it properly. I don’t, I might not put it the right way. (Mary, refugee background, Burmese-speaking)

Some viewed self-collection as more “risky” than clinician collection, and were not prepared to take this risk:

Because it’s cervical cancer…when I have a chance to do it from the doctor, why should I take a risk doing myself? And, if I then I might [say to] myself, “Did I do it properly or not?” So, I don’t want to take the risk myself. And I’m very important for my family, and I’m very important for myself. (Alana, person with sensory disability)

Inserting the swab into the vagina was a specific concern for some participants. Some spoke about potential pain, or, more worryingly, what would happen if the swab got stuck:

[People] might be scared that something might go wrong or, you know, like the cotton gets stuck, or like might not feel comfortable. Discomfort, like around that. (Aria, refugee background, Burmese-speaking)

Paloma, a woman with physical disability said that self-collection would “radically increase the margin of error” as some women were unfamiliar with their own bodies:

Especially, with those women who aren’t that familiar with their anatomy and, possibly aren’t quite sure where they’re going to be putting it. And, yes, that’s right, you’re going to have the doctor instructing but that, there’s a difference between being told what you have to do and then physically doing it.

Participants from refugee and Pacific Islander groups said that some women from these backgrounds might not be comfortable inserting the swab into their own vagina and lacked the confidence in doing the sample correctly:

It’s something that’s unheard of…But whether you’re holding it right or, you know, what you need to do, like for me I’d need it to be demonstrated so that I know I’m doing the right thing. Like you can follow instructions but somebody who doesn’t read or, you know, it’ll be difficult for that woman…But, I think if you get the message across that, you know, it’s important for your health, then yeah, it could work. But for me I haven’t done it…I’m just very like, “Oh, am I gonna do it right?” I mean I’m not a health professional. I’m not a nurse. (Lisa, Pacific Islander)

When asked whether they would try a self-collected sample at their next screening, some participants said more information would help them make the decision:

‘I would want to know more about the pros and the cons. You know, if I self-collect, is that going to affect the data at all if I do it incorrectly, you know? ‘Cause I haven’t been trained. Like how do I know if I’ve gone deep enough in or do I have to do it a specific way? (Blake, trans man)

Preference for clinician-collection

Many participants thought that it was better to have a clinician-collected test because it was performed by a professional, and therefore, less likely to require repetition in the event of human error, which, as previously noted, was viewed as a potential risk of a self-collected sample:

When the doctor does the test, it would be the correct result. [It] might be not correctly with me by myself. Because the doctor knows how to do it. Because the doctor does it every day with lots of women, and she has experience. (Elaine, refugee background, Arabic speaking)

Many participants trusted their healthcare provider to collect the sample correctly and felt that many women and people with a cervix might choose a healthcare provider because they are the professional, the expert:

I would prefer a medical practitioner who knows what they’re doing, who do it every day or whenever, more regularly than I would, [Yep] and would get it done quickly, without a problem… And they’ve got the mindset that the doctor’s paid to do it. (Aurora, Pacific Islander)

She’s [the doctor] the expert. If I was to do self-collection for me, if I’m uncomfortable, I wouldn’t, you know, I probably would abandon it. (Heidi, Pacific Islander)

Concerns specific to those with physical disability

A few participants indicated that self-collection might not be possible for people with physical disability due to dexterity and mobility issues. Some participants explained that they themselves would need someone to assist them with the swab, something they were not comfortable with:

And I feel like it’s probably not something that my husband would feel comfortable doing. And I wouldn’t put a support worker through that. That’s just too far. (Imelda, person with physical disability)

I’ve never had someone do that [swab] for me before, but it doesn’t sound like fun, so probably not. (Sage, person with physical disability)

One participant stated that she would be okay with her local nurse collecting her sample with a swab; however, this was because she had developed a relationship with the nurse and there was a high level of trust in their relationship:

So, that changes it. And that’s probably one of your biggest barriers for women with disability. You know, would I just go into just any other health clinic? No, I wouldn’t. I would actually need to have some sort of relationship with them, and some sort of knowledge of the person before I was comfortable to go in. (Clare, person with physical disability)

Discussion

Australia’s National Cervical Screening Program (NCSP) recommendation that anyone eligible for cervical screening should be offered the choice of HPV testing on a self-collected vaginal sample was made to offer an alternative to clinician-collected screening in order to increase the participation of under-and never-screened groups. In this study, we applied the TFA to examine acceptability of self-collection following the national program change, with the findings indicating a mostly positive view from participants. Other studies have also noted self-collection as an acceptable cervical screening method for under-and never-screened groups in Australia [25–28] and other settings in the Asia-Pacific region [23, 29]. Most participants felt that self-collection could potentially enable more women and people with a cervix from their communities to screen, and they could see the benefits of self-collection, particularly related to privacy and autonomy. Previous research has noted that cultural factors might make some women hesitant to undertake self-collection due to body shyness or embarrassment [30]; however, participants, primarily women from refugee and Pacific backgrounds indicated it could be suitable for members of their community who experienced these issues. Some participants who were trans or gender diverse also stated that self-collection might be acceptable for those in the community who experienced body discomfort and/or gender dysphoria.

Many participants placed high value on having options and choice for cervical screening, describing choice as empowering. While many stated that self-collection sounded easy and low burden in theory, they still expressed concerns about collecting a sample themselves and often preferred clinician-collection. These concerns were primarily related to low confidence in their ability to collect their own sample (low self-efficacy) and worries about self-collection accuracy (perceived effectiveness). Concerns related to accuracy and confidence in self-collecting a sample have also been identified in other studies in Australia [25, 28, 31], and globally [30]. While these concerns are genuine, existing evidence indicates it can be addressed through resources and education about the test, practice, and health provider support, resulting in increased confidence in one’s abilities [23, 32, 33]. Many participants still, however, held the belief that a health provider, such as a GP, would collect the sample correctly, and clinician-collected tests were also an opportunity to identify any visual abnormalities of the cervix or surrounding areas. Some health practitioners in Australia have also expressed concerns around people’s ability to undertake self-collection and not being able to visually examine the cervix as well [34].

Some participants also highlighted dexterity and/or mobility challenges that made self-collection difficult for people with physical disability. Recent qualitative research with healthcare providers who deliver services to people with physical disability in Australia also found that the self-collection swab could be problematic or not feasible for people with physical disability due to these factors [35]. The NCSP Guidelines allow assisted self-collection (i.e., when a healthcare provider helps to collect the sample using the self-collection swab) as an option, negating the need for a speculum exam [36]. We asked a few of our participants with dexterity and/or mobility challenges whether assisted self-collection would be something they would consider, and while it was indicated that it might not be acceptable in some situations (e.g., with a support worker), this is potentially an area to explore further, particularly if done with a trusted healthcare provider as indicated by one participant.

Previous research has indicated that some people with a history of trauma may delay screening, or not screen at all, due to past negative screening experiences or anticipation of being retraumatised [37]. People who are trans or gender diverse may also put off screening because of previous negative experiences with healthcare providers who were non-inclusive [3, 38]. The literature further shows that healthcare settings may be re-traumatising for survivors of sexual trauma [39], and for trans or gender diverse people, a lack of cultural competence among healthcare providers may be a barrier to seeking general care [40]. There may be an assumption that self-collection can address some of these issues because collecting a sample yourself means privacy and limited interaction with healthcare providers; however, some participants, including those who had a history of trauma and/or were gender diverse or trans, still preferred clinician-collection. For these participants, the important factor was having a healthcare provider who treated them with empathy and respect and who they could build trust with.

Consistent with cervical screening in general, where a clinic visit occurs, self-collection is not consistently offered free of charge in Australia, and some participants questioned why they needed to pay to collect their own sample. This issue is particularly significant for vulnerable or low-income groups, as cost has been noted in previous research as a barrier to screening [41, 42]. To align with Australia’s NCSP’s recommendations, and to truly offer choice, an enabling system that makes cervical screening financially accessible should be prioritised [43].

Since the expansion of eligibility for self-collection in the NCSP, the number of under-and never-screened people participating in self-collection has increased [16]. However, participants stated that many people in their communities, and they themselves, did not know about self-collection, and there was a need for community-tailored information sessions and prevention campaigns that were inclusive and culturally sensitive. Regular promotion, including activities that are targeted to priority populations, is one of the ten strategic priorities in Australia’s National Strategy for the Elimination of Cervical Cancer [44], and as a result, campaigns have been in market to increase awareness [45, 46]. If self-collection is to be encouraged as an option, ongoing dissemination of information and awareness is needed so that individuals and communities can make the choice that works best for them.

Limitations

In this study we sought to gauge perceptions and acceptability of self-collection for cervical screening from our four participant groups. The sample size was small and not designed for broad generalisation to the larger population of Australia. We do not claim that the findings reflect the views of the wider communities that our participant groups represent. Nonetheless, the study generated information rich data that highlights broad patterns and variations within and between these groups and offers valuable insights into the challenges and facilitators of self-collection for members of under- and never-screened communities.

Conclusion

While self-collection theoretically expands cervical screening accessibility for those with body shyness and previous negative experiences, increased awareness and attention to barriers, such as low knowledge, concerns about accuracy and self-efficacy, cost, disability-related challenges, and inconsistent access to supportive healthcare services is needed to ensure that everyone is given true choice in the way they screen. Positioning self-collection as a viable and equitable option for women and people with a cervix has the potential to support Australia’s progress toward equitable cervical cancer elimination over the coming decade.

Abbreviations

HPV

Human papillomavirus

LGBTQ+

Lesbian, gay, bisexual, transgender, and queer

NCSP

National Cervical Screening Program

TFA

Theoretical Framework of Acceptability

Authors’ contributions

Paula Jops : Writing – original draft, Investigation, Formal Analysis. Alegra Wolter : Writing – review & editing, Formal Analysis. Claire Bavor : Writing – review & editing, Investigation. Rachael Dodd: Methodology, Conceptualisation. Megan A. Smith : Writing – review & editing, Conceptualisation, Funding acquisition. Tessa Saunders : Writing – review & editing, Conceptualisation. Claire Nightingale : Writing – review & editing, Conceptualisation, funding aquisition. Angela Kelly-Hanku : Writing – review & editing, Methodology, Conceptualisation, Supervision.

Funding

The funding for our project is provided by the National Health and Medical Research Council (Australia) under a Targeted Call for Research Grant (GNT2015178). CN is a recipient of a Mid-Career Research Fellowship (MCRF21039), supported by the Victorian Government. CB is supported by a Postgraduate Scholarship from the National Health and Medical Research Council (Australia) (GNT2030732) and an Australian Government Training Program Scholarship.

Data availability

All relevant data are included in this manuscript. Additional research data are not shared.

Declarations

Ethics approval and consent to participate

Ethics approval was received from UNSW Sydney (HC230425), and two LGBTQ+ community health organisations: ACON (RERC Reference Number 202326) and Thorne Harbour Health (THH/CREP/23/012). Signed (hard copy or electronic) consent forms were obtained from the study participants. Participants were also given the option of providing recorded verbal consent with the interviewer if they were more comfortable doing so.

Competing interests

The authors declare no competing interests.