The Methodological Approach to the Co-Creation of Online Health Education with and for Individuals with Intellectual Disability

Abstract

Background: Health inequalities are evident among adults with intellectual disability. Two large national longitudinal studies have highlighted the paucity of health education among people with intellectual disability. Frequently people with intellectual disability are excluded from health screenings, targeted health promotions and health education. Subsequently health problems often go unrecognised and unmet. Aims: Through co-creation and collaboration, the aim of this project was to develop, refine and validate resources to deliver health education on a novel digital platform in an accessible easy-read manner. The aim of this paper is to describe how the project engaged individuals online to co-create this educational offering. Methods: This is a collaborative project between Ireland and the Netherlands. The project adopts a strengths-based approach and the design adopted is citizen co-creation to promote citizen engagement and involvement in the development of this novel online programme. Individuals with intellectual disability, their carers and researchers worked in partnership to develop content, and co-design the platform. This was enabled by building familiarisation with online engagement with individuals with intellectual disability, designing and developing easy-read accessible materials and through the implementation of a robust consistent approach in both countries. Results: With the appropriate supports in place individuals with intellectual disability were capable of engaging productively and successfully with online interviewing. Many participants had experience using the internet however for many this was their first time engaging online in such a process. In total 37 participants successfully completed the online interviews and pilot-testing, contributing to the development of the content and digital education platform. Conclusion: The digital platform supports individuals with intellectual disability to be better prepared for engaging with healthcare professionals. The aims are increased confidence, and better understanding of what one can do to look after one’s health. The process for developing the co-created materials identifies three critical areas for a successful project or programme: 1) establishing or utilizing relationships where a high degree of trust is in place; 2) assessing technology access and literacy levels across platforms; 3) providing skills training or other support to ensure contributors are actively and meaningfully involved across the project’s lifecycle; and 4) ensuring feedback is acknowledged and used in the co-creation of both process and summative deliverables.