Study approach

The Screening Matters: Aboriginal and Torres Strait Islander women’s attitudes and perspectives on participation in cervical screening study (for brevity, Screening Matters) was initiated, led, and run by Aboriginal and Torres Strait Islander women (LJW, TB, GG). The study approach centred Aboriginal and Torres Strait Islander women’s perspectives and captured individual, community, and structural influences on women’s participation in cervical screening. Details of this approach are reported elsewhere [15,22,23] and adhere to COnsolidated criteria for REporting Qualitative research (COREQ) guidelines [24].

Participants

Seventy-nine eligible Aboriginal and Torres Strait Islander women participated in the larger Screening Matters study. Information about participant recruitment via Primary Health Care Clinic (PHCC) staff and data collection is reported in detail elsewhere [15]. Data reported in this paper were from 29 Aboriginal and/or Torres Strait Islander women who self-reported in the pre-Yarn survey that they had either 1) never screened, 2) had not screened in the previous five years or 3) had recently screened in the past three months after an interval longer than five years. The latter group was included in the current analysis as they could provide insight into factors that influenced their decision to recommence screening. When necessary to distinguish between groups, we refer to this group as “recently screened women”. For brevity, we respectfully refer to the participants collectively as “under-screened women”.

Data collection

After obtaining written informed consent, participants completed a short demographic and health survey. Next, an Indigenous qualitative research methodology called Yarning was used. Yarning is a conversational and relaxed style of sharing stories and information among Aboriginal and Torres Strait Islander people. It is characterised by both social and research-focused conversation. Researchers and participants share information about themselves to build trust and accountability in a culturally safe way and participants provide information in a flexible, narrative format [25,26]. Aboriginal and Torres Strait Islander women conducted all Yarns. A semi-structured Yarning guide provided topics and key questions but allowed researchers to explore topics as they arose. Key topics included personal and community knowledge and views about screening, reasons for not screening, decision-making processes, experiences with the PHCC, and suggestions to improve screening. Women’s perceptions of the self-collection test were also explored and these have been reported elsewhere [23]. Yarning guide questions relevant to the current analysis are provided in S1 File.

After the site visits had been completed, each PHCC key contact provided the de-identified number of under-screened or never screened women who screened in the 30 days following the Yarn. The denominator (n = 21) does not include four recently screened women, one woman who did not have a record at the PHCC, and three women whose PHCC did not respond to requests for data. The total proportion of women who had screened since participating in the Yarn was calculated. The method of participation (self-collected or clinician-collected) was not requested.

Qualitative data analysis

Thematic analysis was conducted using NVivo [27] to organise data. Following initial guidance from an experienced qualitative researcher (KA), a comprehensive coding structure and codebook were developed. Aboriginal and Torres Strait Islander women conducted the analysis. TB and NL independently coded five transcripts, meeting after each to discuss, revise the code structure and update the codebook. TB and NL then independently coded all Yarns. Following this, the nodes were distributed and summarised independently between TB, NL, and LW. As analysis progressed, analysts met regularly to debrief and discuss concepts emerging from the data (using collaborative Yarning [25]). This allowed a culturally safe space to reflect, share and decompress from the stories shared by women, and to reflect on our positioning as Aboriginal and Torres Strait Islander researchers and the intersection of our relatedness and identity with the women’s Yarns. During this process we also identified nodes which required all three researchers to discuss the interpretation and outcomes of resulting analysis. TB then synthesised overarching themes from the node summaries and reflective discussions with iterative feedback and reflection with all co-authors.

Ethics approval

Ethics approval for this research was obtained from the Aboriginal Health and Medical Research Council of New South Wales (AH&MRC) Ethics Committee (1341/17), Central Australian Human Research Ethics Committee (CAHREC, CA-18-3113), Far North Queensland Human Research Ethics Committee (FNQ HREC, HREC/18/QCH/41-1218), Human Research Ethics Committee of the Northern Territory Department of Health and Menzies School of Health Research (2017–2993), Metro South Human Research Ethics Committee (MSHREC, HREC/18/QPAH/52) and the University of Queensland HREC (2021/HE002399). Participants provided informed written consent to participate in the research.

Participant characteristics

All participants identified as women. Most women had not screened for more than five years (79.3%, n = 23), while some had never participated in cervical screening (6.9%, n = 2). A further 13.8% of women (n = 4) had recently screened in the preceding three months after an interval longer than 5 years. Ages ranged from 26 to 66 years old with a median age of 49.5 years old. Most women identified as Aboriginal (89.7%, n = 26), had children (79.3%, n = 23), completed year 12 schooling or below (58.6%, n = 17), and spoke English at home (75.9%, n = 22). Two-fifths (41.4%, n = 12) were single; about a third (31.0%, n = 9) were in a de facto relationship or married; 13.8% (n = 4) were separated or divorced; 10.3% (n = 3) were widowed and 1 woman (3.4%) declined to answer this question. Women mostly resided in major cities (65.5%, n = 19); 31% (n = 9) resided in regional or remote areas. Women were from Queensland (51.7%, n = 15), New South Wales (31%, n = 9) and the Northern Territory (17.2%, n = 5), across five participating PHCCs.

Of the 21 women for whom cervical screening participation information was provided, 7 (33%) women had participated in screening in the 30 days following the Yarn. While women’s subsequent participation in screening cannot be directly attributed to their involvement in this study, it is notable that during the research Yarns, some women suggested that the chance to discuss screening can support a decision to participate.

Well, this [the research] has sort of pushed me to get a Pap smear, like it’s made me want to go and get it done, talking about it more now. P81

Thematic analysis of the Yarns (illustrated in Fig 1) revealed that the harms of cervical screening outweighed the benefits for under-screened women. The harms were: 1) triggering distress, discomfort and trauma; 2) undermined privacy and control; 3) complicated relationships with HCPs; and 4) pressured, insensitive and culturally unsafe communication with HCPs. Amongst these themes, there were stories of women who had recently participated in screening because the barriers to screening were addressed.

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Fig 1. Key themes underlying under-screened women’s views of cervical screening.

https://doi.org/10.1371/journal.pone.0271658.g001

Harms outweigh benefits of cervical screening

Women reported advantages of screening including the potential early detection and prevention of cancer, peace of mind about health, being a role model for female family members and breaking a cycle of poor health. The benefits of screening were perceived to enhance the health of future generations. Many women felt that they knew enough or did not want or need further information about screening. However, for many women, knowledge and awareness of the advantages of cervical screening was not enough to outweigh the harms they associated with screening.

For most there was a perception that participating in screening would compromise their sense of control over psychological and physical boundaries. Women held their understandings of the benefits and their reasons for not participating in cervical screening simultaneously in mind, and actively acknowledged the conflict this created. Ultimately this tension manifested in women’s decisions not to participate in screening.

I find it’s a bit intrusive. It’s embarrassing. I feel shame. But I know on the other hand, too, from an intellectual perspective I know it’s important that we do get these things done so that we look after ourselves as people. P14

The following qualitative analysis describes the barriers to cervical screening underlying women’s decisions not to participate. The stories of women who had recently participated in screening are also described to illustrate how some barriers were addressed.

Triggering distress, discomfort, and trauma

Lack of privacy and control

Cervical screening was viewed as personal and private business. Lack of privacy (including in the clinic environment, the intimate nature of the test itself or with their personal information) was a major factor in women’s decision to not participate in cervical screening. Women described needing to be reassured of privacy and security through having rooms with locking doors, not just a curtained-off area, and saw benefits in a women’s only clinic. Women described that discretion was also an important part of ensuring privacy, preferring a “quiet word” (P74) about cervical screening, rather than a HCP publicly “singing out for me” (P74) in a way the community would know about. While this was particularly emphasised by women in remote areas, some women in urban areas also preferred the community not to know the purpose of their visit to the clinic. One woman wanted to understand where her sample and information went, who looks at it, and how she can get a copy to stay informed of her results and also ensure confidentiality.

Women emphasised the importance of their independent decision making, autonomy, and agency regarding screening and its implications for feeling a sense of control over their bodies.

I’m just an independent woman and make up my own mind. If I want to do it, I’ll do it. It’s as simple as that. P68

One woman’s recent decision to screen was directly related to feelings of control and privacy the option of self-collection afforded her. She viewed clinician-collected screening as an uncomfortably intimate procedure, in part, due to her exposure to sexual violence. She had not participated in cervical screening for over 30 years. However, when her doctor facilitated the option for self-collection for her, she completed it without hesitation.

It was a private thing and it was, you know, the doctor wasn’t doing it. So, I felt more comfortable, because I did it, you know? […] Because there’s no one there, you know what I mean? Looking at you. P19

Complicated relationships with health care providers

Pressured, insensitive, and culturally unsafe communication with HCPs

Excessive and overt pressure from HCPs to participate in cervical screening was not welcomed and undermined women’s sense of decision-making power and control. Pressure to screen was particularly not welcome from male HCPs. Women used phrases such as “people forcing you” (P74) and being “harped on” (P12) to describe this sense of pressure. Women felt that HCPs sometimes pressured them with little regard for concurrent health issues that women were managing.

Sometimes you’re talked into having the test done. Like at the moment I’m dealing with mental health issues and so I really don’t feel comfortable dealing with those things as well as having to have a Pap smear done because staff members are wanting this to be done at this timeframe sort of thing and it feels a bit like bullying. P14.

Pressure sometimes caused women to push back and decline screening more strongly than they might have otherwise, with negative consequences for clinic attendance.

I’ve got a good relationship [with clinic staff], but I don’t like to be harped on. You harp, I won’t come back. I never came back here for a good 12 months because I got sick and tired of, "[name], you have to have this. [name], you have to have that." Harp and I won’t come back. P12

Some reported a complete absence of communication about cervical screening from their HCPs. For others, it had been mentioned with HCPs but not discussed with the desired depth or empathy.

I notice when people say you need a Pap smear […] they’re like, You need to go get it done”, that’s pretty much really it. “You have to go and get it done, it needs to be done.” It’s not gentle. P30

Racism from HCPs, experienced personally or by peers, made women feel unsafe. One woman reported an experience of racism during follow-up of abnormal Pap smear results where she felt the gynaecologist asked her questions about whether she had experienced sexual violence purely because she identified as Aboriginal. Because of this, the woman then refused to discuss the issue with the gynaecologist any further.

She asked me really invasive questions. […] She asked if I’d been sexually abused. […] Like I’m going to tell her. […] And I’m thinking, how could you even—you don’t even know me.[…] I was floored. […] I usually don’t have an issue talking about that but when she said it like that I was like, “No, I haven’t.” […] But don’t you dare ask me. P53

Women expressed a desire for clear, specific and empathetic communication from HCPs about the purpose of cervical screening, and what to expect and do during the test, such as body positioning. There was a need for simple, friendly and accessible language without medical jargon when discussing cervical screening.

A friendly person [would make me feel comfortable]. Not the one that talks the rough way and too many hard words. When you’re Aboriginal, you need someone that talks. Yeah, need more words that, you know, we can understand. A lot of people, they use too many hard words. P74

Sensitive HCP communication and empathetic, trauma-informed care was central to one woman’s recent positive experience of screening after a 24-year interval following experience of sexual violence. This woman felt that this experience of care would make future cervical screening tests much easier.

[The nurse] was just so in tune. She actually explained to me, “Okay, so when the apparatus hits that part of your cervix, it’s going to send all sorts of messages to the brain. It’s not going to know what to do with it.” I was, “Is that what’s happening.” […] She gave me some breathing techniques, she actually told me where [the speculum] was positioned. […] and I took my partner with me, and she didn’t care. I’m like, “My partner is coming in.” “Yes, that’s fine.” P50

A need for trauma-informed care

Women’s expressions of heightened distress and fear about cervical screening indicate that trauma-informed approaches to cervical screening service delivery may support women’s decisions to screen. A trauma-informed approach involves recognising the far-reaching impacts of trauma, recognising signs of trauma and responding appropriately, and a focus on avoiding re-traumatization in health care settings [29]. Key tenets include safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice and choice; and consideration of cultural, historical and gender issues [29]. In the current study, many recently screened women’s stories were characterised by trauma-informed approaches (e.g., trusting relationships, HCPs acknowledging women’s emotions, co-creating solutions, ensuring choice and control). This empathetic approach to care may address many under-screened women’s negative emotional and psychological associations with screening. This approach may also include practical measures to reduce distress, such as allowing extra time for appointments to provide space for sensitive conversations to occur and providing clear explanations of the procedure both before and during the event. Indeed, the process of Yarning with researchers about screening may have provided the time and space for the seven (33%) under-screened women to deeply consider the procedure and decide to participate in screening. A trauma-informed approach to care would also address women’s reported concerns about pressured, insensitive and culturally unsafe communication from HCPs about cervical screening.

It is important to note that while some women reported sexual violence as a traumatic factor influencing their decisions not to participate in cervical screening, this does not describe the experience of all women who are underscreened. Clinicians should not presume experience of sexual violence among Aboriginal and Torres Strait Islander women, nor that such experience is a reason that women may not participate in cervical screening, while also being cognisant that for others, experience of sexual violence could indeed be the reason for non-participation. Clinicians should maintain an open and non-judgemental approach to facilitating screening.

Relationship with health care providers

Women’s relationships with HCPs had both positive and negative impacts on screening. Women’s trust in their HCP was fundamental in starting a discussion about cervical screening at all, but for some women, the intimate cervical screening procedure risked jeopardising their relationship with their HCP. Aboriginal and Torres Strait Islander women who screen regularly [15] and HCPs [22] also note the complexities of the clinician-client relationship in the context of cervical screening. Strong and trusting relationships with HCPs have been found to be critical in other women’s health areas such as antenatal and postpartum care [30,31]. Accommodating the client’s preference for an alternative unfamiliar HCP to conduct screening, including availability of a female HCP, is also an issue raised in other populations [12–14,32]. Understanding the importance of building strong and trusting relationships with health care providers, while recognising the complexities of not wanting to jeopardise the relationship with an intimate procedure may help HCPs facilitate safe and comfortable cervical screening for under-screened Aboriginal and Torres Strait Islander women.

Privacy and control

Women expressed a need to maintain privacy and control over their screening experience. The option of self-collection may provide under-screened Aboriginal and Torres Strait Islander women with the privacy and comfort they need to participate. However, despite self-collection being made available for under-screened women with NCSP renewal, 2018–2019 data suggests that fewer than 6000 self-collected tests have been processed [33]. Findings from the larger Screening Matters study suggest that many Aboriginal and Torres Strait Islander women were not aware of the option for self-collection [23]. Self-collection is acceptable to and feasible for Aboriginal and Torres Strait Islander women [23,34–36]; one participant in the current study had recently screened after a 30-year interval through self-collection. Furthermore other under-screened Australian women report a sense of empowerment through the ability to collect their own sample [37]. Together these findings indicate an urgent need for clinician-client discussions about the option for self-collection in order to support women’s need for privacy and control over their screening experience, a factor that has encouraged other under-screened Australian women to screen [37]. Further, from mid-2022, the restrictions on the eligibility for self-collection will be removed, allowing this choice for all potential screening participants [38]. How providers frame this choice (as equivalent in accuracy rather than as an inferior test and as easy to collect) will be critical to its adoption by women who otherwise will remain under- or never screened. Education, communication and implementation strategies directly informed by the needs of the communities that could benefit most are urgently needed.

Screening participation follow-up

The combined quantitative and qualitative data suggest that the opportunity to Yarn about cervical screening may support women’s decisions to participate in screening. While Yarning was not necessarily the reason for subsequent screening participation, it is striking that one third of eligible women completed cervical screening within 30 days of taking part in the Screening Matters study. The importance of Yarning about screening was also reflected in the qualitative data: some women commented that the opportunity to Yarn about screening helped them to reflect on their reasons for declining screening and motivated them to organise screening. For some, the Screening Matters research project was the first opportunity they had had to Yarn about cervical screening at length and it had given them cause to reflect on participation in cervical screening. The finding suggests that one of the key mechanisms HCPs could use to support under-screened women is to engage them in open and non-judgemental discussions about their reasons for declining screening and co-create solutions together, as demonstrated by some recently screened women’s stories. This could be supported by longer appointment times, ensuring workforce availability, and availability of women’s spaces in which to discuss cervical screening. A shortage of appropriate workforce to provide more appointments and longer appointment times has previously been noted as a barrier to screening [22].

Limitations

As recruitment focused on women attending PHCCs, the views and experiences of under-screened women not engaged with a PHCC are not reflected in the findings; these women may have different concerns or experiences about participation in cervical screening (e.g., access to the clinic or perceptions of clinical care). PHCCs that were involved in the study may also have an interest in supporting women’s screening, so the sample may not represent the views of women in PHCCs where screening is not viewed as a priority. The increased attention on cervical screening in preparation for the researchers’ visit may have also caused a surge in PHCC staff promotion of cervical screening which may not represent usual practice. Another limitation is that women self-reported their screening status and were often unable to recall exactly how long ago their previous cervical screen was, if they had had one. Because of this we are unable to report exactly how long ago (beyond five years) women had last screened.

Strengths

A key strength of the Screening Matters study is the central positioning of Aboriginal and Torres Strait Islander women’s voices as leaders, researchers, and participants in the study, bringing cultural understanding and sensitivity to the findings. Furthermore, the study was made possible through partnership with five Aboriginal Community Controlled Health Organisations and staff. The large number of under-screened Aboriginal and Torres Strait Islander women’s voices reflected in this study is another key strength. Under-screened women’s voices are under-represented in the literature [12,13]. The current findings provide strategies to support their participation in cervical screening that are guided by their views and preferences.

Conclusions

Whilst Australia is on a trajectory to be one of the first countries in the world to eliminate cervical cancer as a public health problem (incidence< 4 per 100,000 women) [9,39,40], cervical screening remains critically low for Aboriginal and Torres Strait Islander women [4]. Reducing barriers to cervical screening is vital to achieve the 67% reduction in incidence required to reach elimination for Aboriginal and Torres Strait Islander women) [11,40]. This study provides important insights to develop strategies to engage this group, based on our findings that enhancing privacy, implementing trauma-informed approaches to care, ensuring sensitivity to clinician-client relationship dynamics and culturally safe communication styles could enhance women’s sense of comfort in, and control over, the screening procedure. The option for self-collection in the renewed NCSP could facilitate positive and empowering screening experiences for under-screened women. Implementing these strategies will support under-screened Aboriginal and Torres Strait Islander women to participate in screening and contribute to achieving cervical cancer elimination among all Australian women.