Date Presented 04/03/2025
The lived experiences of adults with Down syndrome (DS) with respect to their health literacy were explored. Health management within the Occupational Therapy Practice Framework can be effectively understood in this population, enabling better health system modifications.
Primary Author and Speaker: Suja Angelin Chandrasekaran
Contributing Authors: Madisen Huscher, Jessica Oeth Schuttler
PURPOSE: Health literacy, defined as accessing, understanding, and engaging with health information, is a potential intervention target to improve health outcomes in individuals with intellectual and developmental disabilities (I/DD) such as Down Syndrome (DS). This understanding of the barriers to health literacy might lead to the betterment of the health management of this population and all populations in general.
DESIGN: This is a qualitative study design using a Grounded Theory Analysis. It is a qualitative research method that involves collecting data and then developing a theory based on that data.
METHOD: Ten adults with Down syndrome over age 18 who communicated in English participated in the study. Semi-structured interviews were conducted through Zoom with their parents (based on participant preference). The participants were recruited from an Adults with Down Syndrome clinic at a mid-sized academic medical center in the Midwest. Interviews were regarding health literacy which were transcribed and analyzed via thematic analysis.
RESULTS: Themes were identified encompassing how adults with Down syndrome access and understand health information, as well as facilitators and barriers to engaging with health information. Recommendations for both families of adults with DS and healthcare providers were identified. Three major themes including Health Access, Health understanding, and Health engagement emerged after the thematic analysis.
CONCLUSION: Individuals with DS access, understand, and engage with health uniquely. Future interventions focusing on health literacy in adults with DS should use a more individualized approach to enhancing their health literacy. Many of the interventions and ideas described in this study, while identified by individuals with DS, possess the potential to enhance access to healthcare for all. The insights regarding health engagement are expected to result in improved occupational performance of health management.
References
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