Genetics Education Booklets Designed for Individuals with Intellectual Disability: Perspectives from Adults with Intellectual Disability and Genetic Counselors

Visual aid tools have been consistently suggested across literature aimed at identifying methods of improving health and genetics services for individuals with intellectual disability (ID). Aids written in plain language are suggested most often. The study intends to gain perspectives from adults with ID (AWID) and genetic counselors (GCs) on Easy Read genetics educational booklets designed for individuals with mild ID. We anticipate that GCs will find the booklets to be useful and accurate, and that AWID will find the booklets to be helpful to their understanding and comprehensible. The AWID were assessed via a self-reported survey, cognitively adapted for individuals with mild-ID. They were recruited from postsecondary education programs. The GCs were assessed through a separate survey and recruited by email and listserv. Participants were asked questions about their healthcare experiences, educational aids, and their perspectives on the utility of the booklets based on representative pages. Survey data was analyzed through descriptive statistics and chi-squared tests. Our respondents included 17 AWID and 17 GCs who met inclusion criteria and completed the surveys. Of the AWID, 94.1% of participants responded that the booklets were easy to understand, 76.5% responded that they would like to see such booklets at a genetic counseling or health appointment, and 29.4% of respondents felt that such booklets would help them make more independent medical decisions. Of the GCs, common barriers to serving individuals with ID identified were obtaining consent or assent (76.5%) and a lack of resources accessible to individuals with ID (70.6%). After viewing representative booklet pages, 100% of GCs felt individuals with ID would be able to understand them, and 82.4% felt the booklets would help establish consent or assent when seeing patients with ID. Additionally, a significant, positive association was found between GCs who felt the pages would help establish consent or assent and who expressed interest in using the booklets (p = .011). Our results indicated that AWID and GCs find these booklets acceptable and useful educational aids for genetic counseling services. Other methods of educational aids should continue to be explored such as computer models.