The Role of Self-Collection in Optimising Cervical Screening for People With Intellectual Disability: A Multi Perspective Qualitative Study.
8 affiliations
- 1Cancer Elimination Collaboration, School of Public Health, the University of Sydney, Sydney, New South Wales, Australia.
- 2Sydney Medical School, the University of Sydney, Sydney, New South Wales, Australia.
- 3Translational Health Research Institute, Western Sydney University, Sydney, New South Wales, Australia.
- 4School of Education, Faculty of Arts, Design and Architecture, the University of New South Wales, Sydney, New South Wales, Australia.
- 5Disability Innovation Institute, the University of New South Wales, Sydney, New South Wales, Australia.
- 6The Kirby Institute, The University of New South Wales, Sydney, New South Wales, Australia.
- 7Family Planning Australia, Sydney, New South Wales, Australia.
- 8School of Medicine and Public Health, The University of Newcastle, Sydney, New South Wales, Australia.
Abstract
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.
Related
- Practice leadership development in intellectual disability services: A qualitative study of practice leaders’ experiences
- How often do Australian government-funded interventional trials exclude adults with intellectual disability? A retrospective registry analysis of ANZCTR records, 2022-2024.
- An adaptive technical and behavioral approach for biomarker acquisition in autism with intellectual disability
- Nutraceutical, Nutritional and Phytotherapeutic Interventions for Neuropsychiatric Disorders Associated with Intellectual Disability: Mechanisms and Clinical Evidence
- Exome-wide rare variant genetic load is associated with cognition, intellectual disability and psychiatric disorders in population-based cohorts
BibTeX
@article{winkler2026role,
title = {{The Role of Self-Collection in Optimising Cervical Screening for People With Intellectual Disability: A Multi Perspective Qualitative Study.}},
author = {Lauren Winkler and Rosalie Power and Kimberley R Allison and Iva Strnadová and Allison Carter and Jane Ussher and Heather Jolly and Caroline Basckin and Sally Sweeney and Julie Loblinzk and Deborah Bateson},
journal = {Health expectations : an international journal of public participation in health care and health policy},
year = {2026},
month = oct,
doi = {10.1111/hex.70920},
url = {https://europepmc.org/article/MED/42927653},
note = {CC BY},
}
RIS
TY - JOUR
TI - The Role of Self-Collection in Optimising Cervical Screening for People With Intellectual Disability: A Multi Perspective Qualitative Study.
AU - Lauren Winkler
AU - Rosalie Power
AU - Kimberley R Allison
AU - Iva Strnadová
AU - Allison Carter
AU - Jane Ussher
AU - Heather Jolly
AU - Caroline Basckin
AU - Sally Sweeney
AU - Julie Loblinzk
AU - Deborah Bateson
PY - 2026
DA - 2026/10/01
JO - Health expectations : an international journal of public participation in health care and health policy
DO - 10.1111/hex.70920
UR - https://europepmc.org/article/MED/42927653
AB - 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.
SN - 1369-6513
SN - 1369-7625
ER -