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

Sep 23, 2026

Women with intellectual disability experience substantially lower cervical screening participation rates, with limited prior research documenting their lived experiences, particularly in Australia. This qualitative co-production study used trauma-informed methods with 11 participants (26–65) from New South Wales, combining semi-structured interviews and arts-based body mapping, analyzed through reflective thematic analysis. Four themes highlighted empowering yet often traumatic interactions, consent and support tensions, inaccessible information and reminders, and the influence of prior trauma and competing priorities. Participants advocated Easy Read materials, sufficient appointment time, trauma-informed care, and genuine choice to inform healthcare reform.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages14

Reading Time35 min

AccessFree to download

Introduction

Study background and national context

Methods

Study design and participant approach

Findings

Four themes identified

Conclusions

Barriers and reform recommendations

Journal of Applied Research in Intellectual Disabilities ORIGINAL ARTICLE OPEN ACCESS ‘Give People More Time and Take the Time to Explain Things Properly’: Cervical Screening Experiences of People With Intellectual Disability Iva Strnadová1,2,3 | Julie Loblinzk Refalo1,3 | Rosalie Power4 | Caroline Basckin1 | Jane Ussher5 | Lauren Winkler6 | Heather Jolly7 | Deborah Bateson8 1School of Education, Faculty of Arts, Design and Architecture, University of New South Wales, Sydney, New South Wales, Australia | 2Disability Innovation Institute, UNSW Sydney, Sydney, New South Wales, Australia | 3Self Advocacy Sydney Inc., Sydney, New South Wales, Australia | 4Translational Health Research Institute (THRI), Western Sydney University, Sydney, New South Wales, Australia | 5Translational Health Research Institute (THRI), School of Medicine, Western Sydney University, Sydney, New South Wales, Australia | 6The Cancer Elimination Collaboration, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia | 7Family Planning Australia, Sydney, New South Wales, Australia | 8Specialty of Obstetrics, Gynaecology and Neonatology, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia Correspondence: Iva Strnadová ([i.strnadova@unsw.edu.au](i.strnadova@unsw.edu.au)) Received: 4 December 2025 | Revised: 21 January 2026 | Accepted: 9 February 2026 Keywords: autonomy | cervical screening | healthcare communication | intellectual disability | trauma-informed care 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. 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 This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. © 2026 The Auth

FAQs

Why do women with intellectual disability participate less in cervical screening?

The study describes significantly lower participation rates and attributes barriers to healthcare communication failures, rushed procedures, inaccessible information, and the effects of past trauma, alongside consent-related difficulties and broader system shortcomings.

How was the study conducted?

The qualitative research used inclusive co-production and trauma-informed approaches, including semi-structured interviews and arts-based body mapping with 11 participants aged 26–65 from New South Wales, analyzed using reflective thematic analysis.

What barriers and communication problems did participants report?

Participants described interactions ranging from empowering to traumatic, including communication failures, time constraints that undermined informed consent, tensions around support roles, and gaps in accessible information and systematic reminders.

What recommendations did participants make for improving cervical screening?

They recommended Easy Read materials, adequate appointment time, trauma-informed care, and genuine choice in healthcare decisions to reduce barriers and enable safer, more person-centred screening experiences.

Sep 23, 2026

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