‘Give People More Time and Take the Time to Explain Things Properly’: Cervical Screening Experiences of People With Intellectual Disability

ABSTRACT

Background

People with intellectual disability have 70% lower cervical screening participation rates. Limited research has captured their experiences, particularly in Australia.

Methods

This qualitative study used inclusive co‐production and trauma‐informed approaches. Eleven people with intellectual disability (aged 26–65) from New South Wales participated in semi‐structured interviews and arts‐based body mapping, analysed using reflective thematic analysis.

Findings

Four themes emerged: (1) healthcare interactions ranged from empowering to traumatic, with communication failures and rushed procedures; (2) tensions around informed consent and support roles; (3) gaps in accessible information and systematic reminders and (4) how past trauma and competing health priorities influenced screening. Participants recommended Easy Read materials, adequate appointment time, trauma‐informed care and genuine choice in healthcare decisions.

Conclusions

Women with intellectual disability encounter systematic barriers to cervical screening encompassing communication failures, inadequate consent and lack of trauma‐informed care. Their recommendations provide actionable solutions for healthcare reform.

Lay Summary

• Women with intellectual disability have 70% lower cervical screening rates than other women.

• Healthcare communication failures, rushed appointments and trauma prevent screening participation.

• Participants reported being ignored, experiencing pain and lacking genuine informed choice.

• They recommended Easy Read materials, adequate appointment time and trauma‐informed care.

1. Introduction

People with intellectual disability face significant inequalities in cervical screening. A recent systematic review (Power et al. 2024) revealed that women with intellectual disability are about 70% less likely to receive cervical screening compared to their peers without disability. When accessing cervical screening, these women navigate a complex maze of barriers, rooted in individual experiences and systemic failures. Many describe the screening procedure as ‘painful’ and ‘scary’ (Wicks 2007), and clinical time constraints affect informed consent and accessible practices (Dunn et al. 2024). Beyond physical discomfort, there is a pervasive and harmful assumption among healthcare providers that women with intellectual disability are sexually inactive (Stein 2000). This misconception is particularly dangerous given that research shows these women face higher risks of sexual abuse (Tomsa et al. 2021; Royal Commission 2023b), potentially increasing exposure to the human papillomavirus (HPV) (Tomsa et al. 2021; Royal Commission 2023b).

In Australia, the National Cervical Screening Programme underwent significant changes in December 2017, transitioning from Pap smears every 2 years to primary HPV testing every 5 years for people aged 25–74 with a cervix (Australian Government 2023). The extended interval reflects HPV testing's superior sensitivity in detecting high‐grade cervical abnormalities. Eligible individuals receive invitation letters from the National Cancer Screening Register, with self‐collection now available as a universal option for all eligible individuals. Australia's National HPV Vaccination Programme, introduced in 2007 for females and extended to males in 2013, provides free vaccination through schools. However, many women with intellectual disability may not have received the vaccine due to missed school‐based programmes or concerns about consent (Power et al. 2024). These national cervical screening and HPV vaccination programmes are implemented within state and territory‐based healthcare systems, with New South Wales (NSW) being Australia's most populous state.

When healthcare providers take a person‐centred approach, the landscape changes dramatically. Power et al. (2024) found that successful screening often involves multiple preparatory visits and visual aids. Some healthcare providers have learned to adapt their practice and build trust gradually (Breau et al. 2023), including a demonstration of equipment without performing invasive procedures initially (Armin et al. 2022). However, these accommodating practices remain the exception rather than the rule, with many healthcare systems still lacking the coordination between disability services and providers necessary to ensure equitable access to this life‐saving screening (Lloyd and Coulson 2014).

Both the disability (Fletcher et al. 2023) and reproductive justice (Morison 2021) movements recognise that structural and systemic inequalities, including pervasive negative social discourse, limit access to healthcare and undermine the bodily autonomy of people with intellectual disability. For people with intellectual disability, these intersecting injustices are particularly evident in the context of cervical screening, where autonomy, informed choice, and equitable access are often compromised. Australia has committed to eliminating cervical cancer as a public health problem by 2035 (Australian Government 2023), but this goal cannot be achieved without health systems that are inclusive and responsive to the needs of people with intellectual disability. Yet, this group remains largely excluded from research that informs health service design and delivery. Power et al. (2024) reported that fewer than one in four studies included in their review collected data directly from people with intellectual disability. Furthermore, these studies were exclusively conducted in the United States and the United Kingdom, with no studies reporting first‐hand accounts from Australia.

There is a critical need for Australian‐based evidence that centres the voices of women with intellectual disability to understand their cervical screening experiences and enablers and barriers to participation. This includes examining interactions with healthcare providers and experiences with informed decision making, the role of support people in enabling or obstructing care, and the structural features of the healthcare system that may hinder access.

To address these gaps in the research literature, this study aims to examine enablers and barriers to participation in the National Cervical Screening Programme for women with intellectual disability in Australia.

2. Method

2.1. Co‐Production Study Framework and Ethics

This article is part of a broader programme of research ScreenEQUAL, a 3‐year multifaceted study, using an inclusive co‐production framework (Strnadová et al. 2022). This article presents findings from semi‐structured interviews and arts‐based body mapping sessions with cisgender women and non‐binary people about cervical screening.

The research adhered to the principles of inclusive co‐production (Strnadová et al. 2023), and adopted a trauma‐informed approach to minimise the risk of re‐traumatising participants with intellectual disability (Campbell et al. 2019). This approach emphasises creating safe, trustworthy, and empowering environments that resist re‐traumatization. These include predictable and calm environments and avoiding trauma triggers, responding with empathy and validation, providing accessible communication and opportunities for supporting understanding, providing individual choice and decision‐making, and sufficient time and space for emotional processing and feedback (Houck and Dracobly 2023).

A safe research environment was created including offering participants choice and control over how they engaged with the study, using active listening techniques demonstrating empathy for participants' feelings and choices, using strength‐based language, providing clear information about how privacy and confidentiality will be protected, providing breaks during interviews, and options for debriefing and support following participation (Campbell et al. 2019). The initial consent process and all qualitative were co‐facilitated by an academic researcher and researcher with intellectual disability (Strnadová et al. 2020).

The research was guided by an Advisory Group, including people with intellectual disability and other stakeholders from the disability, cancer, and healthcare sectors, with representation across regional and rural, Aboriginal and Torres Strait Islander, culturally and linguistically diverse (CALD), and LGBTQ+ communities.

This study received ethics approval from the University of Sydney Human Research Ethics Committee (ref. no. 2023/146). A continuous consent process was used before, during, and after data collection.

This study adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (Tong et al. 2007). A completed COREQ checklist is provided as Supporting Information 2.

2.2. Participants and Recruitment

Participants were people with intellectual disability, eligible for cervical screening (i.e., people with cervix aged 25–74 years) and living in New South Wales (NSW), Australia. As the research team was using not only semi‐structured interviews but also arts‐based methods, participants could communicate their experiences using either verbal or non‐verbal communication (Dew et al. 2018), and had a choice between in person, online or a phone interview. Data were collected over a 9‐month period, from October 2023 until July 2024.

Sample size was guided by information power (Malterud et al. 2016) rather than data saturation, which is not conceptually consistent with reflexive thematic analysis (Braun and Clarke 2021). Information power suggests that the more relevant information a sample holds, the fewer participants are needed. Several features of the present study contributed to information power: the research aim was tightly focused on a specific phenomenon (cervical screening experiences); participants were drawn from a highly specific population; dialogue quality was strengthened through co‐facilitation with a researcher with intellectual disability and the team's extensive experience in inclusive, trauma‐informed interviewing and the combination of interviews and body mapping enabled rich data generation. These considerations supported adequate information power with 11 participants.

A multi‐pronged recruitment strategy was employed to maximise reach while ensuring participant safety. The primary recruitment approach involved partnering with grassroots disability advocacy organisations and networks, who introduced the project to potentially eligible participants using Easy Read materials. This strategy prioritised trusted relationships and provided a layer of safeguarding through organisational oversight.

Secondary strategies included: (1) invitations for partner organisations to share Easy Read social media advertisements on their platforms (rather than open public posting) and (2) snowball sampling, whereby participants with positive research experiences recommended the study to peers (Danker et al. 2022), a method that itself acts as a form of safeguarding.

Initial recruitment through social media proved problematic, attracting fraudulent participation attempts, an emerging phenomenon in qualitative research (Pullen Sansfaçon et al. 2024). Initial indicators included a sudden influx of emails with suspicious patterns: similar formatting (e.g., ‘namesurnamenumber@gmail.com’), brief generic content (‘Hi, I am interested in participating’), and arrival during unusual hours. Two online interviews were deemed very likely fraudulent and were excluded from analysis to maintain data trustworthiness and integrity (Pullen Sansfaçon et al. 2024). Following removal of reimbursement information from social media advertisements, no further fraudulent attempts occurred. All 11 final participants were recruited through established disability organisations, ensuring authenticity and genuine engagement with the research.

The inclusion of participants with varying screening histories, including those who had never been screened, was a deliberate methodological choice. This approach enabled examination of both barriers preventing initial engagement with cervical screening (through accounts from never‐screened participants) and experiences during the screening process itself (from those who had undergone screening). During interviews, never‐screened participants were asked about their knowledge of cervical screening, reasons for non‐participation, barriers they anticipated or had encountered, and what would facilitate future engagement. This dual perspective enriched our understanding of the full spectrum of enablers and barriers to cervical screening participation.

2.3. Data Collection

Data collection was conducted by the first (I.S.) and the second (J.L.R.) authors, who together have over two decades of experience conducting inclusive research with people with intellectual disability across all levels of support needs. J.L.R., who has intellectual disability herself, brought essential insider expertise to ensure appropriate procedures and accessible information formats. The team has conducted more than 20 inclusive research studies over 12 years using interviews and arts‐based methods with people with intellectual disability. Both researchers work in the area of trauma‐informed practice and co‐facilitate co‐production workshops about trauma‐informed practice for people with intellectual disability, self‐advocacy organisations, and their research teams. Staff training in clinical aspects of cervical screening was provided by D.B., a clinician researcher and current Chair of the NCSP Clinical Advisory Group.

Participants had a choice to take part either in a semi‐structured interview or in body mapping, which were audio‐recorded and transcribed. Semi‐structured interviews lasted 19–50 min (total 7 h 11 min). Field notes were taken either at the start or the end of the interview and included demographic information. Body mapping sessions lasted approximately 60 min, followed by brief interviews (5–15 min) in which participants described the meaning of their body map.

2.3.1. Semi‐Structured Interviews

Interviews were guided by a semi‐structured schedule and conducted in a conversational style (Brinkmann 2022). All interviews were conducted in person and audio recorded. Participants were asked about their knowledge of cervical screening, any experiences they had with the test, interactions with healthcare workers and the clinical environment, the involvement (if any) of a support person, and enablers and barriers to cervical screening, including supports or resources that were or would be helpful.

2.3.2. Body Mapping

Arts‐based research methods are recognised as a valuable way to support participants in creatively expressing emotions and embodied experiences (Boydell et al. 2012). Body mapping provides a rich means of capturing embodied experience that goes beyond the limits of spoken language (Dew et al. 2018). Body mapping involves tracing the outline of a person's body to create a life‐sized template, which participants then fill using art materials to represent an experience or phenomenon (Gubrium et al. 2016). Participants were given the option to have their body traced onto a large sheet of paper or to use a pre‐drawn body outline (Dew et al. 2018). They then filled in and around the body with words, images, and symbols to express their embodied experiences and feelings related to cervical screening. Prompts included questions such as how it felt in their body when thinking about cervical screening.

2.4. Data Analysis

Interview and body mapping data were transcribed verbatim, then checked for accuracy. All data were de‐identified prior to analysis and pseudonyms assigned. A reflexive thematic analysis approach (Braun et al. 2022) was used to interpret the data.

Four team members independently conducted close readings of transcript subsets, generating preliminary codes that were collaboratively refined into a coding framework comprising eight categories: (i) consent and informed decision making, (ii) experiences having or organising a cervical screening consultation, (iii) experiences with healthcare workers, (iv) information (existing and desired) about cervical screening, (v) knowledge and beliefs about cervical screening, (vi) self‐collection of a test, (vii) support people and (viii) system level issues. Data pertaining to people with intellectual disability were coded by the fourth author. This was verified by the first and second authors.

Following systematic coding using NVivo 15.1, we moved from descriptive categorisation to interpretive theme development through iterative team discussion. We identified patterns cutting across categories that captured the deeper meaning of participants' experiences. For example, categories relating to healthcare workers, procedural experiences, and appointment logistics were interconnected through the concept of healthcare interactions; categories concerning consent, support people, and self‐collection converged around autonomy and decision‐making.

This recursive process (Braun et al. 2022) generated four themes addressing how enablers and barriers operate at interpersonal, relational, systemic, and individual levels. A detailed description of the analytical process, including the relationship between initial categories and final themes, is provided in Supporting Information 3.

Throughout the analysis, the research team engaged in ongoing reflexive practice, individually and collectively examining how our positionalities shaped data interpretation. The team comprised researchers with diverse social positions—including researchers with and without disability, female and male cisgender and queer‐identifying members, and researchers from different cultural backgrounds—each bringing distinct perspectives to the data. Reflective practices included: actively seeking disconfirming evidence and alternative readings of data and deliberate attention to power dynamics between researchers and participants.

The involvement of a researcher with intellectual disability was particularly important for reflexivity, as she provided insider perspective that challenged assumptions and enriched interpretation, ensuring that analytical decisions remained grounded in the lived experience of people with intellectual disability.

Traditional member checking through transcript return was not used, as this approach is not accessible for people with intellectual disability. Instead, trustworthiness was supported through co‐facilitation with a researcher with intellectual disability, continuous consent processes, and Advisory Group input.

3. Results

Eleven people with intellectual disability participated in interviews, with five also taking part in a body mapping session. Participants ranged from 26 to 65 years old (mean age 42). Nine identified as cis‐women and two as non‐binary. Eight participants had previous screening experience; three had never been screened. Additional participant characteristics are presented in Table 1.

TABLE 1.

Demographic information for people with intellectual disability.

Participant (pseudonym)	Age	Gender	Background	Relationship status	Had cervical screening
Catherine	63	Female	Anglo‐Australian	Single (with child)	Previous (no longer required) a
Cindy	55	Female	European/Australian	Married	Regular (under anaesthetic)
Emma	27	Female	Anglo‐Australian	Single	Yes
Leo	65	Female	Anglo‐Australian	Engaged	Yes (discontinued) b
Lexy	28	Non‐binary	Anglo‐Australian	Single	Never
Lily	46	Female	Anglo‐Australian	Single (with child)	Never
Mary Jo	49	Female	Hispanic/Australian	Single	Yes
Sally	33	Female	Aboriginal Australian	Married (with child)	Yes
Salma	41	Female	Lebanese‐Australian	Single	Yes
Tina	29	Female	Indian‐Australian	Single	Yes
Tracey	25	Non‐binary	Anglo‐Australian	Single	Never

^a Had hysterectomy, no longer requires screening.

^b Discontinued due to negative experience.

The reflexive thematic analysis identified four overarching themes: (1) Healthcare interactions and experiences, (2) Autonomy, support and decision‐making, (3) Knowledge, information and system navigation and (4) Personal context and barriers. The four themes are presented in an order that moves from immediate interpersonal experiences to broader systemic and individual factors. Theme 1 (Healthcare interactions and experiences) addresses the most proximal barrier, i.e., what happens when women attempt to access screening. Theme 2 (Autonomy, support and decision‐making) examines the relational dynamics that surround these interactions. Theme 3 (Knowledge, information and system navigation) situates individual experiences within broader informational and systemic contexts. Theme 4 (Personal context and barriers) acknowledges how individual life circumstances intersect with these healthcare experiences. Together, these themes address the research question by revealing how enablers and barriers to cervical screening participation operate at interpersonal, relational, systemic and individual levels. For details of themes and subthemes, please see Figure 1.

FIGURE 1.

Thematic map.

3.1. Healthcare Interactions and Experiences

Participants' experiences with healthcare providers proved pivotal in shaping their engagement with cervical screening. While some accounts referenced general healthcare experiences that shaped overall attitudes towards medical care, most focused specifically on interactions during cervical screening consultations. Where relevant, we distinguish between general healthcare experiences that influenced screening attitudes and specific cervical screening encounters. Analysis revealed a spectrum ranging from empowering encounters that facilitated screening to traumatic experiences that created lasting barriers.

3.1.1. Provider Communications and Attitudes

Communication from healthcare providers emerged as a critical determinant of whether participants experienced cervical screening as accessible or alienating. Negative experiences shared common characteristics: time‐pressured consultations, use of medical jargon, and communication directed to support persons rather than patients. Positive experiences were distinguished by adequate time, clear explanations, and direct engagement with the patient.

Insufficient appointment time was the most commonly reported barrier, identified by the majority of participants. Time pressure left inadequate opportunity for information to be explained or questions answered, and appeared to exacerbate other communication problems. Lexy explained: ‘I'm lucky if I get five minutes with my doctor’, while Mary Jo described doctors who ‘don't do much and don't listen to you, or have no idea what to do with you’. The use of inaccessible medical terminology compounded these difficulties. As Lexy noted: ‘Half of the stuff, I don't understand what [my doctor's] going on about’.

A particularly problematic pattern involved healthcare workers bypassing the patient to communicate with accompanying support persons. This practice, reported by several participants, undermined their sense of agency and respect. Emma articulated this directly: ‘The doctor should be talking to the patient, not to the support worker’, and valued her GP specifically because ‘he talked to me, not my mum’. Salma described how ‘sometimes they don't even speak to you’, while others reported feeling ‘disrespected’ (Lily) or ‘vulnerable and scared’ (Sally) when their needs were not accommodated.

In contrast, positive experiences—though less common—demonstrated the significant impact of respectful, patient‐centred care. Catherine described her doctor as someone who ‘takes her time with me … She explains things … sometimes writes it down in a book for me’. Lily valued a doctor who ‘actually listened to me, looked at me when I was talking to her, and not many doctors do that’. Salma highlighted the importance of an ongoing relationship with a doctor who ‘checks on me once a week … He's funny … But he's also the one that writes strong letters when I need help’.

3.1.2. Procedural and Physical Experiences

Physical and sensory aspects of cervical screening emerged as central concerns, with procedural experiences ranging from manageable discomfort to severe trauma. Among participants with screening experience (n = 8), discomfort during the procedure was nearly universal, though severity and impact varied considerably.

Participants consistently described the test as ‘painful’ (Catherine), ‘very uncomfortable’ (Emma), and ‘very awful’ (Tina). Physical discomfort was frequently compounded by clinical environments that felt rushed or insensitive, and by concerns that were not adequately acknowledged. Sally captured this intersection of physical and emotional distress: ‘It was really uncomfortable! Physically and emotionally. It hurts. It was rushed, and I was told that, like … let's just say … it was rushed. I don't feel like I was considered during it’.

For some participants, procedural experiences were severe enough to require medical intervention or to prevent future engagement. Cindy explained that ‘my gynaecologist does it [cervical screening] when I'm knocked under the anaesthetic’, though she noted significant post‐procedure effects: ‘I was in pain afterwards! … I was so sore! They gave me Panadol, and I felt sick, vomiting …’ The invasive nature of the procedure itself created distress for others. Tracey described it as ‘very awkward. Especially as an asexual, I don't do anything like that. It was very … it felt very uncomfortable’.

Traumatic encounters had lasting consequences for future healthcare engagement. Leo described being denied support and experiencing pain during the procedure: ‘I tried to [tell her to stop], and she wouldn't listen’. The resulting bleeding and trauma prevented her return for subsequent screening. Sally similarly felt unable to voice her distress during the procedure: ‘I didn't feel like I could’.

Participants also described coping strategies emerged to manage procedural distress. Catherine noted that ‘once you know it's done, you're relieved’, expressing need for ‘a cuddle after the test’. Lexy described how she managed distress: ‘When in pain, or upset, I like to play my video games or watch YouTube on my laptop … That's how I cope with it’. Catherine's body map (Figure 2) visually represented these emotional dimensions of screening.

FIGURE 2.

Detail from Catherine's body map, referring to pain experienced during cervical screening.

3.2. Autonomy, Support and Decision‐Making

Analysis revealed persistent tensions between participants' desire for autonomy in healthcare decisions and the various ways that autonomy was compromised or supported through interactions with healthcare providers and support persons.

3.2.1. Informed Consent and Decision‐Making

Experiences with informed consent varied markedly, revealing a gap between participants' articulated right to make healthcare decisions and the reality of how consent was obtained in practice. While participants clearly valued autonomous decision‐making—as Lexy stated, ‘we have a right to decide whether we should or shouldn't do the test’—many reported experiences where meaningful consent was absent.

The most striking accounts described screening occurring with minimal opportunity for informed decision‐making. Sally's experience of having cervical screening scheduled during pregnancy without meaningful consent: ‘I was in the hospital when they told me …. There was no preparation. There was no time. There was nothing … I don't feel like I had a choice, no’. She reflected on the emotional impact:

I didn't want them to see me cry, so basically I tried to not cry because I didn't want to expose myself, I didn't want to feel exposed or vulnerable, but it was really, really painful emotionally more than anything, and it was obviously uncomfortable but it was emotionally uncomfortable as well, which makes me come down to pushing boundaries. Like, if they don't communicate, they're definitely pushing boundaries …. And if they don't stop when I ask them to stop, or wait or something, it's too much.

Despite feeling overwhelmed and distressed, Sally did not feel she could ask for the procedure to stop, ‘Um, no, I didn't [ask them to stop]. I just thought I had to go on with it and do what I was told, kind of thing’.

A consistent preference across participants was the option to choose the gender of their healthcare providers for intimate procedures. Mary Jo explained that ‘a female doctor … is easier to talk to about women's stuff’. Lexy emphasised that ‘Women should have the right to decide whether they want a male doctor or nurse, or a female one as well’. Even when this preference could not always be accommodated, having the option to choose was important to participants' sense of control.

3.2.2. Role of Support Persons

The involvement of support persons (both paid and unpaid) in cervical screening created both opportunities for facilitation and risks of diminished autonomy. Analysis revealed that what mattered most was not whether support was present, but whether the individual had genuine choice about the nature and extent of that support.

For many participants, persons provided valued practical and emotional assistance. Lexy appreciated her housemate's advocacy: ‘she's not afraid to say, “Hey, look, she doesn't understand what you're saying. Calm it down and let her understand it”’. Catherine wanted her mum to accompany her because ‘forms I get a bit stuck on’. Emma attended with her mum and Aunt, recalling, ‘My mum was outside, my aunty was inside’ and explained, ‘She [my Aunty] was standing beside me, and she held my hand! It was scary the first time I had it’.

However, support was not universally available or helpful. Lily lacked access to support: ‘I don't have any friends, because I don't have a lot of trust in people’. Leo's support person refused to accompany her: She said, ‘I'm not going in there with you! You'll be right!’ Some participants deliberately attended appointments alone to maintain control over their healthcare decisions. Mary Jo explained her reasoning: ‘I'm worried that they'd [Support person] take over … I want to be able to make decisions for myself, not have them decide for me’.

Participants stressed the importance of having a genuine choice about who accompanies them, rather than having this determined by clinicians. Lexy challenged the assumption that healthcare providers should control support person involvement:

I think that they should have the right to decide that [who can come into the consultation], not the doctor, because I know some doctors are like, ‘No, you can't be in here. They can do it on their own’.

3.2.3. Self‐Collection Perceptions

Views on self‐collection revealed a tension between valuing the autonomy it offers and concerns about capability and reliability. The majority of participants preferred healthcare worker involvement, primarily due to concerns about performing the test correctly. Lack of confidence in self‐administration was the dominant concern. Leo articulated this clearly: ‘I don't know if I do it right, or if I muck it up’. Emma agreed it ‘would be hard to do by yourself’, while Cindy rejected the option: ‘Because I wouldn't know what I'm doing!’

However, a minority of participants valued self‐collection for the privacy and control it afforded. Lily preferred to ‘do it myself … Because it's more private’. Sally, whose past trauma shaped her healthcare experiences, self‐collection offered an important alternative: ‘not necessarily easier, but I'll feel more comfortable. Probably won't be triggered’.

3.3. Knowledge, Information and System Navigation

Analysis revealed significant gaps between participants' recognition of screening importance and their access to understandable information and navigable systems.

3.3.1. Knowledge and Health Beliefs

Participants' understanding of cervical screening varied considerably, with most recognising its importance for cancer prevention while holding misconceptions about eligibility and purpose. Knowledge was shaped by personal or family experiences with cancer.

The preventive purpose of screening was understood in general terms. Catherine noted, ‘You need to have it done because it's important for cancer’. Mary Jo's positive engagement was rooted in family history (as portrait in her body map, Figure 3): ‘cancer's a big thing in my family … the women have had a lot of cancer in the lower parts … today we are very lucky … People talk about it all the time. So, we are more aware of what this is, and what it does’.

FIGURE 3.

Detail from Mary Jo's body map, also referring to her family's history of cancer.

However, misconceptions about who needs screening and its purpose were evident. Emma believed she was too young to be at risk: ‘I'm too young for cancer … I'm 27. I'm not 28 yet, or not 30 yet’, concluding that ‘Old people in their wheelchairs, they need to get it done if they've got cancer’. Lexy questioned the value of screening itself: ‘Even if I did have cervical cancer … What's the test going to do?’

Some participants learned about screening's preventative purpose during the research interviews, highlighting the absence of prior accessible education. Lexy reflected on the discomfort and silence surrounding the topic: ‘Not a lot of people do like to talk about these sorts of things because it makes them feel uncomfortable … That's a very sensitive topic, very dark and creepy’.

Broader attitudes towards health also influenced screening engagement. Lexy described a pattern of health avoidance: ‘I don't see my health as important. I never have. If I'm in pain or anything, I just put up with it until it goes away’, extending this to cervical screening: ‘I don't see it [cervical screening] as important at all. In fact, I see it as a waste of time and energy … I decided I'd never do it’.

3.3.2. Information Resources and Needs

Significant gaps existed in accessible information about cervical screening, with participants consistently reporting that available materials did not meet their needs. Participants articulated clear preferences for format, content and delivery.

Current information was widely described as inaccessible. When asked about gynaecological materials, Cindy responded: ‘Some yes, some no … Definitely not in Easy Read’ (see Figure 4), explaining the importance of accessible formats: ‘sometimes when the doctor explains it, he says all the medical stuff and I'm like, what are you talking about?’ Sally described receiving an inaccessible screening letter: ‘The writing was tiny, and it was a page full, and I didn't want to read anything important, so I just threw it out’. Tracey noted Government letters were consistently inaccessible: ‘No, they never are. I just look and I see ‘Government’ and then I hand it to Mum’.

FIGURE 4.

Detail from Cindy's body map, also showing the need for Easy Read information.

Participants expressed clear format preferences. Easy Read materials with visuals were prioritised. Catherine requested ‘information that you can see’, and Leo commented, ‘Don't use jargon. Just use everyday language, like I like to’. Salma, who has a visual impairment, specified: ‘The print's too small … they need to look at enlarging the print’. She added: ‘I know a lot of people with intellectual disability, they prefer the pictures and then writing underneath’.

Multiple information channels were desired. Lexy proposed a comprehensive website that would be ‘friendly’ with ‘details of what is expected of the process, what type of support you can get’, including accessibility features like ‘voice activation, where it reads for them’ and language options. Cindy recommended videos showing ‘Real people, because how can you tell what your body's like if it's animated?’ Mary Jo valued printed pamphlets at medical centres, while Leo noted that they should be ‘Very short … Because if it's too long, people won't read it all’. Several participants expressed interest in more interactive, such as a face‐to‐face workshop or a ‘support network to talk to people about it’ (Catherine).

Participants also identified a representation gap: the absence of people with intellectual disability in educational materials.

3.3.3. System‐Level Issues

Healthcare system features themselves created barriers to screening, particularly through inadequate reminder systems and poor coordination between disability and healthcare services.

The shift to 5‐year screening intervals following the introduction of HPV testing created significant challenges for participants who struggled to track when screening was due. The absence of reliable reminders frustrated many. Cindy emphasised their importance: ‘Especially with a medical appointment, because half the time you forget anyway!’ Lily reported never receiving invitations despite the National Cancer Screening Register sending letters: ‘No. I don't think I've ever had one sent to me’. Mary Jo relied on her doctor's tracking: ‘She'll let me know if something needs to be done’, suggesting ad hoc rather than systematic approaches.

Intersections between disability support systems and healthcare created additional barriers. Tina highlighted NDIS (National Disability Insurance Scheme) funding disparities: ‘If you're too high‐functioning, because you've got a job … they say “You're too high functioning to count for NDIS funding”’. She argued NDIS should cover specialised procedures for women who ‘can't just sit through a normal pap smear’.

3.4. Personal Context and Barriers

Individual circumstances, including trauma histories and competing life demands, shaped participants' screening experiences and engagement in ways that intersected with the healthcare, relational, and systemic factors identified above.

3.4.1. Previous Experiences and Trauma

Past trauma profoundly shaped attitudes towards cervical screening, creating anticipatory barriers that preceded any contact with screening services. For participants with histories of abuse or negative healthcare experiences, cervical screening represented a significant psychological challenge.

Sally's body map (see Figure 5) powerfully depicted this experience, showing ‘This means war’ over her heart: ‘it feels like I'm going to war … From past experiences, I don't like it’. Her abuse history coloured her perspective: ‘it's just scary when I think about things like that and doing procedures like this’.

FIGURE 5.

Detail from Sally's body map, summarising her experiences with cervical screening.

Negative healthcare experiences also created lasting mistrust. Lexy expressed deep distrust of healthcare providers (see Figure 6): ‘I hate my doctors, and I don't trust them’. This mistrust was strong enough to shape her decision never to have cervical screening (see Figure 7), while she encouraged other women to make their own informed choices (see Figure 8): ‘I would advise them to decide for themselves what would be best for them. So, for instance, if they're unsure and I'll go look for my own personal thing, I wouldn't go do it. But if you trust your doctor, then go see your doctor and be straightforward with your doctor’.

FIGURE 6.

Detail from Lexy's body map, showing her deep mistrust in healthcare workers.

FIGURE 7.

Detail from Lexy's body map, showing her decision regarding cervical screening.

FIGURE 8.

Detail from Lexy's body map, demonstrating her encouragement of other women with intellectual disability to do cervical screening.

3.4.2. Individual Circumstances

Individual health conditions, identity factors, and material circumstances created unique barriers that compounded other challenges to screening access.

Competing health priorities were common, with participants managing multiple conditions that overshadowed preventive care. Mary Jo was managing diabetes; Salma dealt with bowel problems alongside her family cancer history.

Personal identity influenced healthcare experiences. Tracey, identifying as asexual, felt ‘very uncomfortable’ during sexual health discussions, noting ‘there's not a lot of personal experience for people who are also in my situation’.

Financial constraints complicated access for some participants. Tina contrasted her situation with her sister's: ‘she has more money than I do … She also gets Centrelink [Australia's social security system] benefit. I don't’.

Sensory sensitivities posed additional barriers for participants with co‐occurring autism. Tracey described how ‘your brain doesn't know what … to [filter out] so it picks up every single thing’ making clinical environments particularly distressing.

4. Discussion

This study aimed to examine enablers and barriers to participation in the National Cervical Screening Programme for women with intellectual disability in Australia. Our findings reveal that barriers operate at multiple interconnected levels: interpersonal (healthcare provider communication and attitudes), procedural (physical and emotional experiences during screening), relational (dynamics of consent and support), informational (gaps in accessible resources), systemic (inadequate reminder systems and service coordination) and individual (personal trauma histories and competing health priorities). Enablers, though less frequently experienced, were equally multidimensional, encompassing trusted healthcare relationships, adequate consultation time, accessible information and genuine choice in healthcare decisions.

The systematic barriers identified in our study align with recognised gaps in Australia's health system. The National Roadmap for Improving the Health of People with Intellectual Disability (Australian Government 2023) acknowledges that people with intellectual disability experience more than twice the rate of avoidable deaths and significantly lower rates of preventative healthcare compared to the general population. Our findings illustrate ways in which these systemic inequities may manifest in cervical screening services. This study explored how women with intellectual disability navigate a healthcare system that can undermine their dignity and autonomy, particularly in accessing cervical screening (Power et al. 2024). The findings suggest a troubling paradox between women's recognition of the importance of screening and their often traumatic experiences attempting to access it. The women's accounts suggest that this tension stems from failures in communication, consent processes and accommodation of individual needs.

The participating women highlighted that healthcare workers often lack appropriate communication skills, rush appointments, use complex medical jargon, and sometimes bypass the patient entirely to speak with support persons. The communication failures described by participants align with broader systemic issues recognised in the National Roadmap, which identifies that many people with intellectual disability have low health literacy, making it difficult for them to understand how and when to access health services (Australian Government 2023). The Roadmap emphasises that public health communication must be available in formats suitable to people with intellectual disability, such as plain language and Easy Read resources—recommendations that mirror participants' specific requests for accessible cervical screening information. The communication failures identified in this study mirror those documented in genetic healthcare services. A recent study (Strnadová et al. 2023) found that people with intellectual disability who engage with genetic healthcare services in Australia face several similar barriers, including logistics, difficulties navigating the health system, a lack of inclusive practice by healthcare workers and service providers, communication issues, and rushed consultations. These parallel findings suggest that the communication challenges faced by women with intellectual disability in cervical screening represent a broader pattern of exclusionary healthcare practices. The systematic under‐recognition of trauma in people with intellectual disability (McNally et al. 2021) may compound the healthcare barriers identified in our study. A recent scoping review (McNally et al. 2021) found that traumatic events are not routinely assessed for people with intellectual disability, and that challenging behaviours are often managed without considering underlying trauma. This has direct implications for cervical screening services, as healthcare providers may not recognise that previous medical trauma could influence women's screening experiences and decisions.

Support networks emerged as crucial but complex factors. Some support people served as advocates and sources of comfort; others inadvertently diminish the women's agency. Furthermore, engagement with the patient (i.e., a woman with intellectual disability) is often in the hands of the healthcare providers, who often choose to speak only to support people instead.

Physical and emotional trauma resonated throughout many accounts (see Sections 3.1.2 and 3.4.1). Women described pain, discomfort, fear, and for some, the re‐traumatization of previous abuse experiences. The lack of appropriate sensory accommodations, rushed procedures, and insufficient preparation combine to create deeply negative experiences that deter future engagement with preventive care. The National Roadmap emphasises that trauma‐informed approaches (Keesler et al. 2023) are especially important for people with intellectual disability, many of whom have experienced neglect or abuse and may have significant fear associated with healthcare interventions (Australian Government 2023). The roadmap specifically notes that models of care should incorporate reasonable adjustments to reduce distress and trauma, including adapting communication methods, adjusting surroundings, taking additional time, and involving support people in care provision. These recommendations directly align with participants' accounts in our study. A recent scoping review (McNally et al. 2021) emphasises that trauma‐informed care approaches are essential for people with intellectual disability, noting that while some elements like safety and empowerment are being implemented in services, other crucial elements such as collaboration and genuine choice remain poorly applied. The participating women's accounts in our study align with this finding, as they consistently identified genuine choice in healthcare decisions as fundamental to their sense of safety and autonomy. Similarly to a recent study with people with intellectual disability's (Strnadová et al. 2023) findings, this study emphasises the need for ongoing work to address healthcare workers' awareness of the trauma experienced by people with intellectual disability in health. This is critical, as healthcare trauma is explicitly linked with poor health outcomes, for example, by deterring people from cancer screening (Royal Commission 2023a).

Yet amidst these challenges, the participating women offered recommendations to improve the status quo: accessible information in Easy Read formats (Chinn and Homeyard 2017), adequate time for appointments, the opportunity to bring trusted support persons, and healthcare providers who communicate directly, clearly, in plain English, and respectfully. Critically, accessible information is needed not only to facilitate appointment attendance, but to improve health literacy about the preventive purpose of cervical screening and address widespread misconceptions—such as the belief that screening is only necessary when cancer is already present—that create barriers to participation. Their suggestions for choice of self‐collection with healthcare provider assistance when needed, peer support groups, and better system‐level coordination reveal thoughtful insights into potential solutions.

5. Future Research

Future research should explore the effectiveness of specific interventions suggested by participants, including accessible information formats, trauma‐informed screening protocols, and systematic reminder systems. Longitudinal studies examining the impact of these interventions on screening participation rates would provide valuable evidence for policy change. Additionally, research should investigate the experiences of women with intellectual disability who have high support needs, those from CALD backgrounds, as well as those in rural and remote areas.

6. Strengths and Limitations

To the authors' knowledge, this study represents the first Australian study examining first‐hand experiences of cervical screening, including self‐collection, among people with intellectual disability. The research employed robust inclusive co‐production methodologies, with academic researchers and a researcher with intellectual disability collaborating throughout all stages. Multiple data collection methods, including arts‐based body mapping, enabled participants to communicate experiences through both verbal and non‐verbal means. The trauma‐informed approach minimised potential harm while creating a safe research environment. Importantly, the practical recommendations emerging from participants' lived experiences provide evidence‐based pathways for healthcare improvement.

Several limitations should be acknowledged. The study was conducted solely in New South Wales, Australia, potentially limiting transferability to other healthcare systems and jurisdictions. The sample size of 11 participants, while appropriate for qualitative inquiry, cannot provide generalisable findings, though it offers important insights into the experiences of this marginalised population. Recruitment was limited to participants able to engage through verbal or arts‐based communication, excluding people with intellectual disability who have high support needs or complex communication requirements. This represents a significant gap, as these individuals may face even greater barriers to cervical screening. Additionally, the sample lacked ethnic diversity, with limited representation from CALD backgrounds. Future research should prioritise inclusion of these underrepresented groups to ensure a more comprehensive understanding of facilitators and barriers across diverse communities.

The study's experience with fraudulent participation attempts warrants reflection. While reimbursement serves important equity functions by recognising participant contributions, its public advertisement on social media may create vulnerabilities in online recruitment for sensitive topics. Future studies may benefit from communicating reimbursement details only after initial eligibility screening through trusted organisational channels. Importantly, the fraudulent attempts did not compromise data integrity, as affected interviews were identified and excluded before analysis, and the final sample comprised authentic participants with verified connections to disability organisations.

7. Conclusions

This study provides compelling evidence that women with intellectual disability face systematic barriers to cervical screening that extend far beyond physical access issues. Participants' narratives reveal how communication failures, inadequate consent processes, and lack of trauma‐informed care create environments where dignity and autonomy are compromised. Yet these same women offer practical, achievable solutions for improving care.

Their recommendations—from accessible information formats about cervical screening to systematic reminder systems—provide a clear pathway for reform. However, implementing these changes requires more than technical adjustments; it demands a fundamental shift in healthcare culture that positions women with intellectual disability as experts in their own care needs.

As healthcare systems worldwide grapple with equity challenges, this study demonstrates that meaningful progress requires listening to those most affected by systemic barriers. The voices of women with intellectual disability in this research offer not just critique but a blueprint for creating healthcare environments where dignity, autonomy and quality care are rights afforded to all.

Author Contributions

Iva Strnadová: study conception and design, acquisition of data, analysis and interpretation of qualitative data, manuscript preparation, manuscript review. Julie Loblinzk Refalo: acquisition of data, interpretation of qualitative data, manuscript review, Easy Read summary review. Rosalie Power: analysis and interpretation of qualitative data, manuscript review, Easy Read summary preparation. Caroline Basckin: analysis and interpretation of qualitative data, manuscript review. Jane Ussher: study conception and design, analysis and interpretation of qualitative data, manuscript preparation, manuscript review. Lauren Winkler: analysis and interpretation of qualitative data, manuscript review. Heather Jolly: analysis and interpretation of qualitative data, manuscript review. Deborah Bateson: study conception and design, analysis and interpretation of qualitative data, manuscript preparation, manuscript review.

Funding

This study was funded by the Australian Government National Health and Medical Research Council (NHMRC) grant Overcoming Inequity: Increasing cervical screening participation for people with intellectual disability. Project ID: 2015215.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Supporting Information: 1. Easy Read summary of research findings. An accessible Easy Read booklet summarising the key findings of this study. The 15‐page document, developed using Photosymbols images and photographs taken by the research team, presents the study's four main themes (referred to as ‘ideas’) in plain language. The booklet also includes participant quotes and recommendations for how to make cervical screening better for people with intellectual disability.

Supporting Information: 2. COREQ checklist. A completed Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (Tong et al. 2007), documenting how the 32‐item reporting criteria were addressed across three domains. Domain 1, research team and reflexivity, covers personal characteristics and the relationship with participants. Domain 2, study design, includes the theoretical framework, participant selection and setting. Domain 3, analysis and findings, details data analysis procedures, reporting practices and the presentation of findings. Page and section references are provided for each item.

Supporting Information: 3. Data analysis. A detailed description of the reflexive thematic analysis process (Braun et al. 2022) used to interpret the data. This document outlines two main phases of analysis. In the initial coding phase, members of the research team independently conducted line‐by‐line readings of transcripts and collaboratively developed a preliminary coding framework comprising eight categories. In the theme development phase, the team moved from descriptive categorisation to interpretive theme development through iterative discussion. The document describes how patterns cutting across multiple categories were identified and how the final four themes were derived from the interrelationships among the coded categories.

Data Availability Statement

The data that support the findings of this study are not publicly available due to privacy and ethical restrictions relating to the sensitive nature of the information provided by participants. The data contain personally identifiable information and were collected under conditions of confidentiality. Requests for further information about the data may be directed to the corresponding author.