Enhancing Health Literacy for People with Developmental Disabilities

Posted by Nora Barnett on March 31st, 2025 Posted in: Blog
Tags: Developmental Disabilities Awareness Mont

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March is Developmental Disabilities Awareness Month! This month is an opportunity to think about how we can improve health literacy for individuals with developmental disabilities. When people can find, understand, and use health information, they are better equipped to make informed health decisions. For people with developmental disabilities, better health literacy leads to better health outcomes, reduces misinformation, and enhances communication with healthcare providers.

Understanding developmental disabilities

MedlinePlus
The MedlinePlus page on developmental disabilities is a great place to start to learn about which conditions are developmental disabilities, how developmental disabilities are diagnosed, genetics, and related issues.

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Institute of Child Health and Human Development (NICHD) leads research efforts to understand intellectual and developmental disabilities. Their site includes:

• An Intellectual and Developmental Disabilities Research Information page that includes links to PubMed keyword searches (on the right hand side of the page)
• Resources for Patients
• Resources for Researchers and Healthcare Providers

Resources for improving health literacy in people with developmental disabilities

Podcast: Health Literacy Out Loud
The Health Literacy Out Loud podcast episode, Developing Materials for Adults with Intellectual Developmental Disabilities and Extreme Low Literacy, features Helen Osborne in conversation with Molly Lynch, MPH, and Linda Squiers, PhD, from RTI International. They discuss key strategies for creating accessible health materials, including:

• Understanding the Audience – Engage adults with intellectual and developmental disabilities (IDD) in the development process to ensure materials meet their needs.
• Simplifying Content – Use clear, straightforward language and avoid complex terms or jargon.
• Using Visual Aids – Incorporate images and graphics to make information more understandable.
• Adding Interactive Elements – Include checklists, prompts, or activities to reinforce engagement and comprehension.
• Field Testing – Gather feedback from the intended audience and make necessary adjustments to improve usability.

CDC Tool: Developing Communication Materials for People with Developmental Disabilities
The CDC provides a helpful tool for designing and evaluating health communication materials for people with developmental disabilities. The tool emphasizes best practices, including:

• Focusing on One Behavioral Recommendation – Keep each resource focused on a single action step to ensure clarity.
• Eliminating Non-Essential Information – Include only what is necessary to support the behavioral recommendation.
• Using One Idea per Page or Screen – Pair a single image with one to two lines of text for clarity.
• Writing in Clear, Literal Language – Use simple words and avoid idioms or figurative speech.
• Keeping Images Realistic – Use literal, real-world images instead of abstract symbols.
• Incorporating Social Stories – Provide step-by-step instructions with a single main character to help individuals navigate behaviors and situations.

The tool also lets you evaluate current materials for health literacy best practices! Check out the CDC’s full tool here: CDC Communication Tool.

Research on improving health literacy in people with developmental disabilities

If you’d like to explore the research literature on health literacy for individuals with developmental and intellectual disabilities, we’ve compiled some articles for you.

Articles about practical application:

Latteck ÄD, Bruland D. Inclusion of People with Intellectual Disabilities in Health Literacy: Lessons Learned from Three Participative Projects for Future Initiatives. Int J Environ Res Public Health. 2020 Apr 3;17(7):2455. doi: 10.3390/ijerph17072455. PMID: 32260257; PMCID: PMC7177820.

Full text at: https://pmc.ncbi.nlm.nih.gov/articles/PMC7177820/

This article is useful for understanding practical lessons from real-world participatory projects that include individuals with intellectual disabilities in health literacy efforts. It offers actionable insights for designing more inclusive health literacy programs.

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Vetter NS, Voß M, Bruland D, Seidl N, Latteck ÄD. Promoting health literacy in people with intellectual disabilities via explanatory videos: scoping reviews. Health Promot Int. 2023 Aug 1;38(4):daab193. doi: 10.1093/heapro/daab193. PMID: 34849904.

Full text at: https://pubmed.ncbi.nlm.nih.gov/34849904/

This scoping review highlights the use of explanatory videos to promote health literacy in individuals with intellectual disabilities. The article is particularly relevant for understanding how multimedia interventions can enhance health literacy

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Elmadani M, Klara S, Kiptulon EK, Andrade D, Orsolya M. A systematic review of educational interventions to enhance cancer awareness and screening in individuals with intellectual disabilities: A mixed-methods approach. Res Dev Disabil. 2024 Dec;155:104867. doi: 10.1016/j.ridd.2024.104867. Epub 2024 Nov 2. PMID: 39489096.https://pubmed.ncbi.nlm.nih.gov/39489096/

Full text at: https://www.sciencedirect.com/science/article/pii/S0891422224001999?via%3Dihub

This systematic review focuses on educational interventions aimed at enhancing cancer awareness and screening for individuals with intellectual disabilities. This article stands out for its specific focus on a health issue (cancer awareness and screening) and provides practical insights into improving health literacy in a specific context.

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Harris, J., & Hiller, D. (2024). Perspectives on the essential skills of healthcare decision-making in children and adolescents with intellectual disability. International Journal for Equity in Health, 23(1), 27. https://doi.org/10.1186/s12939-024-02204-5

Full text at: https://equityhealthj.biomedcentral.com/articles/10.1186/s12939-024-02204-5

Healthcare decision making is an essential part of health literacy. This article explores the essential skills required for healthcare decision-making in children and adolescents with intellectual disabilities, making it relevant to practical applications in healthcare settings.

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Articles offering theoretical discourse and context

Geukes C, Bröder J, Latteck ÄD. Health Literacy and People with Intellectual Disabilities: What We Know, What We Do Not Know, and What We Need: A Theoretical Discourse. Int J Environ Res Public Health. 2019 Feb 5;16(3):463. doi: 10.3390/ijerph16030463. PMID: 30764539; PMCID: PMC6388359.

Full text at: https://pubmed.ncbi.nlm.nih.gov/30764539/

This article provides a broad theoretical discourse on health literacy for people with intellectual disabilities, summarizing what is known and what gaps remain in research. The article suggests that current health literacy models may not fully capture the specific challenges and capabilities of this group.

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Latteck ÄD ÄD, Bruland D. Health Literacy of People with Intellectual Disabilities: How Meaningful Is the Social Context for a Target Group-Oriented Model of Health Literacy? Int J Environ Res Public Health. 2022 Nov 30;19(23):16052. doi: 10.3390/ijerph192316052. PMID: 36498123; PMCID: PMC9741347.

Full text at: https://pmc.ncbi.nlm.nih.gov/articles/PMC9741347/

This study identified six main dimensions affecting health literacy in people with intellectual disability: interpersonal relationships, organizations and communities, healthcare systems, education, digital interaction spaces, and cultural contexts. This paper adds to the understanding of how the environment influences health literacy and presents a more tailored approach to supporting those with intellectual disabilities.

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Vetter NS, Ilskens K, Seidl N, Latteck ÄD, Bruland D. Health Literacy of People with Intellectual Disabilities: How Meaningful Is the Social Context for a Target Group-Oriented Model of Health Literacy? Int J Environ Res Public Health. 2022 Nov 30;19(23):16052. doi: 10.3390/ijerph192316052. PMID: 36498123; PMCID: PMC9741347.

Full text at: https://pmc.ncbi.nlm.nih.gov/articles/PMC9741347/

This article also addresses the social context in health literacy for individuals with intellectual disabilities, similar to the 2022 Latteck & Bruland paper. Its significance lies in how it extends the discussion about the environment’s impact on health literacy to practical interventions.

 

In honor of developmental disabilities month, take a step to improve health literacy for people with developmental disabilities—whether by using the CDC tool, reading an article, or making health information clearer with literal language, visual aids, a focus on one behavioral recommendation, interactive elements, and social stories. Let’s make health information easier to find, understand, and use!