Measuring digital health participation in people with intellectual disabilities

Abstract

Background and proposed aims: People with intellectual disabilities experience greater digital exclusion and have poorer health literacy. In the absence of good quality research, health inequalities are likely to worsen leading to poorer health outcomes. Research is needed to better understand digital health participation in people with intellectual disabilities. Due to low methodological quality of existing measures, assessment of intervention efficacy is difficult. The aim of this research is to co-create a digital health participation scale for people with intellectual disabilities and a proxy measure for carers. Proposed methods: To develop a valid and reliable measure of digital health participation a thematic analysis and synthesis of findings from a scoping review of extant measures and 12 focus groups with 40 people with intellectual disabilities and 20 carers will be conducted. Stages of scale development will include: (i) item generation; (ii) adaptations to the measure; (iii) piloting and seeking consensus; and (iv) psychometric analysis. Preliminary Findings: Based on preliminary reading and discussion this measure of digital health participation will comprise: (i) Digital participation; (ii) Support for digital participation; (iii) Health literacy; (iv) Frequency and success of engagement in digital health activity; (v) Additional inductively derived aspects of digital health participation. Potential implications and applications: The measure will be used in a large scale survey to determine levels of digital health participation and inequality among adults with intellectual disabilities. This will subsequently be used to co-develop guidance and interventions to enhance digital health participation.<br/

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