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 four 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.

Digital inclusion and participation of people with intellectual disabilities during COVID‐19: A rapid review and international bricolage

“…A variation of study designs were used in the 16 papers included in the rapid review. Of all 16 papers reviewed, 10 were descriptive (Amor et al, 2021;Araten-Bergman & Shpigelman, 2021;Burke et al, 2021;Jeste et al, 2020;Lunsky et al, 2021;Masi et al, 2021;McCausland et al, 2021;Navas et al, 2021;Rawlings et al, 2021;Scheffers et al, 2021) and had a cross-sectional design, of which three used mixed methods (Lunsky et al, 2021;Navas et al, 2021;Rawlings et al, 2021). All three included open-ended questions that were analysed mainly through qualitative content analysis.…”

“…Additionally, of the above 10, one employed a cocreation study design (Burke et al, 2021) and another was a quantitative longitudinal study comparing pre-and post-COVID-19 survey responses (McCausland et al, 2021).…”

“…Four studies were from the United Kingdom (Datlen et al, 2020;Power et al, 2021;Rawlings et al, 2021;Rothman, 2021); two from Canada (Lake et al, 2021;Lunsky et al, 2021); two from Spain (Amor et al, 2021;Navas et al, 2021); two from the Netherlands (Scheffers et al, 2021;Zaagsma et al, 2020); one from Australia (Masi et al, 2021); one from Ireland (McCausland et al, 2021); and one from the United Sites (Spencer et al, 2021). One study was carried out in Ireland and the Netherlands (Burke et al, 2021); another was carried out mainly in the United States (Jeste et al, 2020) and one was F I G U R E 1 Prisma flowchart of study identification entirely online and therefore not country specific (Araten-Bergman & Shpigelman, 2021). Settings included: education (Burke et al, 2021;Spencer et al, 2021); independent residences and residential services (McCausland et al, 2021;Zaagsma et al, 2020); health care (Lunsky et al, 2021;Masi et al, 2021); education and health services (Jeste et al, 2020); therapeutic settings (Datlen et al, 2020;Lake et al, 2021;Power et al, 2021;Rawlings et al, 2021;Rothman, 2021); and finally a combination of various settings due to surveys being sent out through large organisations (Amor et al, 2021;Navas et al, 2021;Scheffers et al, 2021) or on the Internet (Araten-Bergman & Shpigelman, 2021).…”

“…art therapy) (Datlen et al, 2020;Navas et al, 2021;Power et al, 2021;Rothman, 2021), or virtual visits from family members (Araten-Bergman & Shpigelman, 2021;McCausland et al, 2021;Scheffers et al, 2021) through videocalls. This relied on financial resources for procuring ICT devices and an internet connection being available and accessible (Burke et al, 2021;McCausland et al, 2021). Other personal characteristics, measured among older people with ID, that were associated with greater ICT access and use were mild or moderate levels of ID, and being under age 65 (McCausland et al, 2021).…”

“…As for searching information online, people with ID wished for more cognitive accessibility (Lake et al, 2021). Most often, technical support was reported as a prerequisite often needed to profit from online social participation and services (Amor et al, 2021;Burke et al, 2021;McCausland et al, 2021). Caregivers or one's personal support network were the most likely persons to provide technical support to service users (Power et al, 2021;Rawlings et al, 2021), especially for students under the age of 21 (Amor et al, 2021).…”