Strnadová Iva, Dunn Manjekah, Molnar Chloe, Loblinzk Refalo Julie, Scully Jackie Leach, Danker Joanne, Tso Michelle, Lim Tiffany Qing, Cathcart-King Yasmin, Jackaman Karen-Maia, Hayes Sarah, Willow Sierra Angelina, Boyle Jackie, Hansen Jennifer, Sarfaraz Skie, Basckin Caroline, Halliburton Celia, Sri Ganeshan Thulasee, Middleton Edwina K, Terrill Bronwyn, Palmer Elizabeth Emma
School of Education, UNSW Sydney, Sydney, NSW, Australia; Disability Innovation Institute, UNSW Sydney, Sydney, NSW, Australia; Self Advocacy Sydney Inc., Sydney, NSW, Australia.
Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, NSW, Australia; Sydney Children's Hospitals Network, Randwick, NSW, Australia.
Genet Med. 2025 Apr;27(4):101371. doi: 10.1016/j.gim.2025.101371. Epub 2025 Jan 30.
People with intellectual disability inequitably access high-quality genetic health care. However, they are keen to understand genetic health care and recommend that clinicians need education on delivering more inclusive care and that multimodal genetic health literacy resources should be coproduced.
Our inclusive research team applied best-practice coproduction principles to deliver a suite of resources, the GeneEQUAL Toolkit. Mixed-methods evaluation, including surveys and focus group/interviews, assessed (1) clinicians' perceived capabilities, motivation, and opportunities for providing inclusive health care for people with intellectual disability before and after exploring the Toolkit; (2) the perceptions and opinions of people with intellectual disability about the Toolkit; (3) the reach of the Toolkit components; and (4) the reflections of people with intellectual disability and clinicians on the coproduction process.
The Toolkit met the expectations and preferences of people with intellectual disability and clinicians, and had a global reach. Coproduction was feasible and judged as critical for the high value of the Toolkit, in motivating clinicians to change their clinical practice and empowering people with intellectual disability.
Coproduction can be successfully applied to improve the engagement of people with intellectual disability, potentially reducing health inequity and improving the safety and quality of genetic health care.
