"All doctors should be trained in that": The co-production and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic healthcare for people with intellectual disability.

Abstract

Purpose: People with intellectual disability inequitably access high-quality genetic healthcare. Yet, they are keen to understand more about genetic healthcare and recommend clinicians need education on delivering more inclusive care and that multi-modal genetic health literacy resources should be co-produced.

Methods: Our inclusive research team applied best practice co-production principles to deliver a suite of resources, the GeneEQUAL Toolkit. Mixed-methods evaluation including surveys and a focus group/interviews assessed (i) clinicians' perceived capabilities, motivation, and opportunities for providing inclusive healthcare for people with intellectual disability before and after exploring the Toolkit; (ii) the perceptions and opinions of people with intellectual disability about the Toolkit; (iii) the reach of the Toolkit components; and (iv) the reflections of people with intellectual disability and clinicians on the co-production process.

Results: The Toolkit met the expectations and preferences of people with intellectual disability and clinicians and had global reach. Co-production was feasible and judged critical for the high value of the Toolkit, in motivating clinicians to change their clinical practice and empowering people with intellectual disability.

Conclusion: Co-production can be successfully applied to improve the engagement of people with intellectual disability and potentially reduce health inequity and improve safety and quality of genetic healthcare.