Building Evidence for Principles to Guide the Development of Products for Adults with Intellectual and Developmental Disabilities and Extreme Low Literacy—A Product Development Tool

Author:

Squiers Linda1,Lynch Molly M.1,Holt Sidney L.1ORCID,Rivell Aileen1,Walker Kathleen2,Robison Stacy2,Mitchell Elizabeth W.3,Flores Alina L.3

Affiliation:

1. RTI International, Research Triangle Park, NC 27709, USA

2. CommunicateHealth, Rockville, MD 20850, USA

3. Centers for Disease Control and Prevention, Atlanta, GA 30333, USA

Abstract

This article presented a new product development tool for adults with intellectual and developmental disabilities (IDD) developed by the Centers for Disease Control and Prevention (CDC). People with IDD who also have extreme low literacy (ELL) have unique communication needs; public health communicators often face challenges developing effective communication materials for this audience. To support CDC communication specialists with the development of communication products for adults with IDD/ELL, CDC, with its partners RTI International and CommunicateHealth, created a product development tool for this audience through literature review, expert input, and interviews with adults with IDD/ELL and caregivers of adults with IDD/ELL. To build evidence around the principles described in the tool, RTI conducted interviewer-administered surveys with 100 caregivers who support people with IDD/ELL. During the interviews, we presented caregivers with stimuli (portions of a communication product) that either did or did not apply a single principle and asked which would be easier for the person they support to understand. Across all 14 principles tested, the caregiver respondents indicated that the principle-based version would be easier for the person they support to understand compared with the non-principle-based version(s). These findings provide additional evidence to support the principles included in CDC’s Tool for Developing Products for People with IDD/ELL.

Funder

Centers for Disease Control and Prevention, Office of the Director

Publisher

MDPI AG

Subject

Health Information Management,Health Informatics,Health Policy,Leadership and Management

Reference19 articles.

1. The CDC Clear Communication Index is a new evidence-based tool to prepare and review health information;Baur;Health Promot. Pract.,2014

2. Gleason, J., Ross, W., Fossi, A., Blonsky, H., Tobias, J., and Stephens, M. (2021). The devastating impact of COVID-19 on individuals with intellectual disabilities in the United States. NEJM Catalyst., 2, Available online: https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0051.

3. Centers for Disease Control and Prevention (2023, February 28). Facts about Intellectual Disability, Available online: https://www.cdc.gov/healthcommunication/Preferred_Terms.html.

4. A systematic review of U.S. studies on the prevalence of intellectual or developmental disabilities since 2000;Anderson;Intellect. Dev. Disabil.,2019

5. Centers for Disease Control and Prevention (2021, February 26). Developmental Disabilities, Available online: https://www.cdc.gov/ncbddd/developmentaldisabilities/index.html.

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