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'Give People More Time and Take the Time to Explain Things Properly': Cervical Screening Experiences of People with Intellectual Disability

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Title: 'Give People More Time and Take the Time to Explain Things Properly': Cervical Screening Experiences of People with Intellectual Disability
Language: English
Authors: Iva Strnadová (ORCID 0000-0002-8513-5400), Julie Loblinzk Refalo (ORCID 0000-0003-1350-6089), Rosalie Power (ORCID 0000-0001-9434-3941), Caroline Basckin (ORCID 0000-0003-0591-7769), Jane Ussher (ORCID 0000-0002-2128-0019), Lauren Winkler (ORCID 0000-0002-7283-232X), Heather Jolly, Deborah Bateson (ORCID 0000-0003-1035-7110)
Source: Journal of Applied Research in Intellectual Disabilities. 2026 39(2).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 14
Publication Date: 2026
Document Type: Journal Articles
Reports - Research
Descriptors: Screening Tests, Cancer, Intellectual Disability, Foreign Countries, Trauma Informed Approach, Adults, Health Services, Surgery, Informed Consent, Access to Information, Females, Barriers, Health Education, Information Sources, Health Materials, Readability
Geographic Terms: Australia
DOI: 10.1111/jar.70206
ISSN: 1360-2322
1468-3148
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.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1504031
Database: ERIC
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  Data: 'Give People More Time and Take the Time to Explain Things Properly': Cervical Screening Experiences of People with Intellectual Disability
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  Data: <searchLink fieldCode="AR" term="%22Iva+Strnadová%22">Iva Strnadová</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-8513-5400">0000-0002-8513-5400</externalLink>)<br /><searchLink fieldCode="AR" term="%22Julie+Loblinzk+Refalo%22">Julie Loblinzk Refalo</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-1350-6089">0000-0003-1350-6089</externalLink>)<br /><searchLink fieldCode="AR" term="%22Rosalie+Power%22">Rosalie Power</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-9434-3941">0000-0001-9434-3941</externalLink>)<br /><searchLink fieldCode="AR" term="%22Caroline+Basckin%22">Caroline Basckin</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-0591-7769">0000-0003-0591-7769</externalLink>)<br /><searchLink fieldCode="AR" term="%22Jane+Ussher%22">Jane Ussher</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-2128-0019">0000-0002-2128-0019</externalLink>)<br /><searchLink fieldCode="AR" term="%22Lauren+Winkler%22">Lauren Winkler</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-7283-232X">0000-0002-7283-232X</externalLink>)<br /><searchLink fieldCode="AR" term="%22Heather+Jolly%22">Heather Jolly</searchLink><br /><searchLink fieldCode="AR" term="%22Deborah+Bateson%22">Deborah Bateson</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-1035-7110">0000-0003-1035-7110</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. 2026 39(2).
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: 14
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  Data: <searchLink fieldCode="DE" term="%22Screening+Tests%22">Screening Tests</searchLink><br /><searchLink fieldCode="DE" term="%22Cancer%22">Cancer</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Trauma+Informed+Approach%22">Trauma Informed Approach</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Surgery%22">Surgery</searchLink><br /><searchLink fieldCode="DE" term="%22Informed+Consent%22">Informed Consent</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Information%22">Access to Information</searchLink><br /><searchLink fieldCode="DE" term="%22Females%22">Females</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Education%22">Health Education</searchLink><br /><searchLink fieldCode="DE" term="%22Information+Sources%22">Information Sources</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Materials%22">Health Materials</searchLink><br /><searchLink fieldCode="DE" term="%22Readability%22">Readability</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22Australia%22">Australia</searchLink>
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  Data: 10.1111/jar.70206
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  Data: 1360-2322<br />1468-3148
– Name: Abstract
  Label: Abstract
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  Data: 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.
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  Data: 2026
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  Data: EJ1504031
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      – SubjectFull: Cancer
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      – SubjectFull: Intellectual Disability
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