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The Role of Self-Collection in Optimising Cervical Screening for People With Intellectual Disability: A Multi
Lauren Winkler1,2, Rosalie Power3, Kimberley R Allison1,2
1Cancer Elimination Collaboration, School of Public Health, the University of Sydney, Sydney, New South Wales, Australia.
Background:
Evidence on whether self-collection addresses inequities in cervical screening participation for people with intellectual disability is limited. This study explored how self-collection is understood by people with intellectual disability and those in their support and healthcare networks and factors that support or hinder access.
Methods:
Semi-structured interviews were undertaken with four participant groups in New South Wales. This analysis reports on participants who discussed self-collection (n = 59) within a broader interview study (N = 66): people with intellectual disability (n = 9); family members and support people (n = 12); managers/leaders in disability organisations and private disability services (n = 19) and healthcare professionals (n = 19). Interviews used trauma-informed and accessible methods and were analysed using reflexive thematic analysis within a co-production framework.
Results:
Three themes captured participants' perspectives: (1) Reclaiming bodily autonomy: self-collection restored decision-making power by allowing people to collect their own vaginal sample or choose and guide a trusted healthcare professional to assist (2) Safety, trust, and freedom from harm: Self-collection was perceived as less invasive than a speculum examination and supported safer participation for those with healthcare anxiety or trauma (3) Structural inequities and ableist gatekeeping: Limited confidence with self-sampling, ableist assumptions, clinician-centred pathways, and uncertainty around support roles constrained access.
Conclusions:
Self-collection offers important opportunities to improve cervical screening participation for people with intellectual disability but requires multisectoral reforms including accessible sexual and reproductive health education and screening information informed by lived experience, trauma-informed and rights-based training across health and disability workforces and alternative screening models for safer home-based self-collection. These changes are essential to realise the reproductive autonomy and safety of people with intellectual disability and ensure meaningful progress towards equitable cervical cancer elimination.
Patient Or Public Contribution:
People with intellectual disability were involved throughout the study as co-researchers, advisors, and active research participants. An Advisory Group including two members with intellectual disability, with support from their designated support person, informed the study design, recruitment strategies, accessible methods, and interpretation of findings, with pre- and post-meeting support to ensure meaningful and safe participation. The study adhered to principles of the inclusive research framework, 'Doing Research Inclusively: Guidelines for Co-Producing Research with People with Disability' whereby all study materials, consent processes, and interviews used multimodal and accessible formats such as Easy Read, video, visual supports and body-mapping and were trauma-informed. Study findings were translated into accessible cervical screening resources by partnering with people with intellectual disability in the community, including people living in regional areas, in the planning, creation and feedback of the resources. These methods of inclusive research supported rapid translation of study findings into practical resources with potential for rapid scale-up through Australia's National Cervical Screening Program, to support equitable access to cervical screening by people with intellectual disability.
