Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2022

Increasing cervical screening participation for people living with intellectual disability: ScreenEQUAL – an innovative disability-inclusive study protocol to support equity (#248)

Jane Ussher 1 , Iva Strnadova 2 , Ee-Lin Chang 3 , Allison Carter 4 , Julie Loblinzk 2 , Sally Sweeney 5 , Deborah Bateson 6
  1. Translational Health Research Institute, University of Western Sydney , Sydney, NSW, Australia
  2. Special Education and Disability Studies , UNSW, Sydney, NSW, Australia
  3. Health Promotion Team, Family Planning NSW, Sydney, NSW, Australia
  4. The Kirby Institute, UNSW, Sydney, NSW, Australia
  5. Clinical Services , Family Planning NSW, Sydney, NSW, Australia
  6. The Daffodil Centre, The University of Sydney, Camperdown, NSW, Australia

 

Background

Australia is on track to be the first country to eliminate cervical cancer but elimination must be achieved equitably. People with intellectual disability are significantly less likely to engage with screening than the general population due to social, cultural, economic, physical, sensory and psychological barriers.  This NHMRC study is developing and evaluating  a co-designed and co-produced suite of resources to enhance health literacy, support informed decision-making and increase participation in the National Cervical Screening Program.

Methodology

Supported by the ScreenEQUAL Advisory Group, this 3-year mixed-methods study utilises disability-inclusive and integrated knowledge translation (iKT) frameworks:

  • Co-designed interviews using novel participatory body-mapping and photovoice methodologies will explore barriers and facilitators to screening amongst participants (x40) with intellectual disability, their carers, disability support workers, GPs and nurses.
  • Qualitative outcomes will support co-production of a suite of educational courses and accessible written and web-based information, and a toolkit to support and evaluate informed decision-making and health literacy attainment.
  • People with intellectual disability aged 25-74 years due or overdue for screening (x 200) will be invited to participate in a pragmatic cluster randomised control trial to evaluate effectiveness and impact of the pilot resource packages. Over 6-months, the intervention group will receive supportive resources for people with intellectual disability, workshops for family carers, community education for support workers and clinical education for GPs and nurses. Baseline and endline interviews will be conducted, and resources will be available to all participants at study conclusion.

Implications

Australia’s National Roadmap for Improving the Health of People with Intellectual Disability (2021-2031) highlights the need for improved health literacy, and for education and training for carers and healthcare professionals to support autonomy and reduce equity gaps. ScreenEQUAL will support policy and practice change across Australia, with implications for achieving the global WHO cervical cancer elimination targets equitably.

 

 

  1. Carter, A., I. Strnadová, C. Watfern, R. Pebdani, D. Bateson, J. Loblinzk, R. Guy and C. Newman (2021). "The Sexual and Reproductive Health and Rights of Young People with Intellectual Disability: A Scoping Review." Sexuality Research and Social Policy
  2. Lennox, N., C. Bain, T. Rey-Conde, M. Taylor, F. M. Boyle, D. M. Purdieà and R. S. Ware (2010). "Cluster Randomized-Controlled Trial of Interventions to Improve Health for Adults with Intellectual Disability Who Live in Private Dwellings." Journal of Applied Research in Intellectual Disabilities 23: 303-311