The Importance of Accessible Information in Promoting the Inclusion of People with an Intellectual Disability

Abstract

People with an intellectual disability experience high levels of social exclusion and a range of health inequalities. Increased inclusion and participation in healthcare decision making have been identified as key to promoting inclusion in health and social care. However, achieving these objectives requires increased recognition of the communication and health literacy needs of individuals with an intellectual disability and consideration of the appropriateness of the information currently provided. In this article, we report the results of a pre-COVID-19 qualitative study exploring the provision and use of accessible information to support the healthcare inclusion of individuals with an intellectual disability. A total of 35 clinicians participated in focus group discussions, and 10 people with intellectual disabilities and 10 carers were interviewed regarding their experiences of using accessible health-related information. Qualitative data analysis using a framework approach highlighted the crucial role of communication partners when using accessible information, deficits in current National Health Service (NHS: UK’s publicly funded health care system) information provision in the UK, and possible broader relevance of accessible resources. The implications of these findings for the provision of accessible information in a post-COVID-19 environment are explored, and recommendations are made for the increased integration and theory-driven research to inform the provision, content, and use of health-related information, especially the provision of online information, in the future.

Health Literacy of People with Intellectual Disabilities: How Meaningful Is the Social Context for a Target Group-Oriented Model of Health Literacy?

“…There are two aspects to consider: the health information provided and the communication to the providers. The first aspect includes the experiences and preferences of health information, as well as support for involvement in healthcare [ 21 ]. As mentioned above, information is offered mostly in easy-to-read language, but it is assumed that information should be provided such that it fits into the individual experience and the resources.…”

“…Sometimes, they prefer them to the standard reading leaflets, but they would prefer bigger writing or more pictures. However, audio information seems to be missing in healthcare [ 21 ]. This presents opportunities for improving health information offerings.…”

Data, Data, Everywhere: Uncovering Everyday Data Experiences for People with Intellectual and Developmental Disabilities

“…Early intervention can improve adaptive skills and appropriate support, such as active caregivers or community programs, may allow a person with IDD to actively participate in society [12,61]. In our discussions with people with IDD, caregivers, and community advocates, people with IDD increasingly need support working with data for a variety of applications, ranging from personal informatics (e.g., healthcare or budgeting) to public advocacy (e.g., participating in civic discussions around community policies) [19,64,65].…”

Vieglā valoda. Rokasgrāmata

“…(Bite 2021) Cilvēki ar intelektuālās attīstības traucējumiem ir pakļauti sociālās atstumtības riskam un saskaras ar nevienlīdzību dažādās dzīves jomās. Ierobežota piekļuve saprotamai informācijai jau ilgstoši ir bijis aktuāls jautājums, un Covid-19 pandēmija šo situāciju ir tikai pasliktinājusi (Terras et al 2021). Cilvēkiem ar intelektuālās attīstības traucējumiem ir nepieciešama droša un prognozējama vide.…”