Date Presented 03/28/20
Nationally, only 10% of children eligible for EI receive services. Parents with low health literacy have difficulty accessing the EI system. Accessible written information is needed to reduce this difficulty. This study evaluated EI materials provided by one state’s Department of Public Health. Four assessment tools measured accessibility, including the CDC Clear Communication Index. None of 26 materials had adequate scores. Materials need to be revised to be effective.
Primary Author and Speaker: Catherine Leslie
Additional Authors and Speakers: Taylor Delosh
Contributing Authors: Jillian Crehan
PURPOSE: Nationally, only 10% of children eligible for early intervention (EI) receive services. The EI program serves families of children with or at risk for developmental delay or disability. The lack of eligible children receiving services is concerning due to the demonstrated benefits of EI services on children’s developmental outcomes. Parents with low health literacy often have difficulty accessing the EI system. Accessible written information is needed to reduce difficulty in accessing EI and to increase the number of eligible children receiving services. The purpose of this study was to evaluate accessibility of written materials about EI services provided to families by one Northeast state’s Department of Public Health (DPH).
DESIGN: This study used a descriptive study design. Materials were included if they were publicly available through one Northeast state’s DPH; could be downloaded and printed; and were intended for families accessing, receiving, or transitioning out of EI.
METHOD: Three researchers trained in the assessment tools recommended in the Agency for Healthcare Research and Quality’s Universal Precautions Toolkit, 2nd Edition independently assessed 26 early intervention materials. Score discrepancies were resolved by consensus. Scores on four assessment tools were calculated to measure 5 areas of accessibility for each material: clear communication (CDC Clear Communication Index), suitability (Suitability Assessment of Materials), reading level (Simple Measure of Gobbledygook), and understandability and actionability (Patient Education Materials Assessment Tool). Materials were categorized into 3 parts of the EI process: accessing, receiving, or transitioning out of early intervention. Total average scores for the 5 areas of accessibility of the 26 EI materials were calculated.
RESULTS: Overall, zero out of 26 materials scored adequately across all four assessment tools. The clear communication score average was 33.31% on the CDC Clear Communication Index, with a score of 90% needed to indicate a material is using clear language and content effectively. Average suitability score of 48.62 on the Suitability Assessment of Materials categorized the materials as “adequate. ” Average reading level on the Simple Measure of Gobbledygook was 13.48 grade or college reading level, which is above recommended 5th to 8th grade reading level. Patient Education Materials Assessment Tool scores averaged 52.94% for understandability and 53.59% for actionability, with higher percentile scores from 0-100% being more favorable.
CONCLUSION: EI materials provided to families by one state’s DPH have low accessibility scores. Parents with low health literacy may have difficulty understanding and acting on the information in these materials. Based on findings of this study, materials should be revised through user-testing with families. Lack of accessibility causes an unnecessary barrier when families need EI services for their child. Assessment tools used in this study are free and publicly available, and could be used to guide creation or improvement of written materials in all practice settings.
IMPACT STATEMENT: If parents of children with developmental delay or disabilities aren’t able to read and understand provided EI materials and take appropriate action, their child may not receive needed EI services. Materials should be assessed and revised as needed to ensure accessibility.
References
National Early Childhood Technical Assistance Center. 2011. The importance of Early Intervention for infants and toddlers with disabilities and their families. Retrieved from https://ectacenter.org/∼pdfs/pubs/importanceofearlyintervention.pdf
U.S. Department of Health and Human Services. (2015). Health literacy universal precautions toolkit, 2nd edition: Assess, select, and create easy-to-understand materials: Tool #11. Retrieved from https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/healthlittoolkit2-tool11.html.
Rosenberg, S. A., Zhang, D. & Robinson, C. C. (2008). Prevalence of developmental delays and participation in Early Intervention services for young children. Pediatrics, 121(6) e1503-e1509. doi:10.1542/peds.2007-1680
Jimenez, M. E., Barg, F. K., Guevara, J. P., Gerdes, M., & Fiks, A. G. (2013). The impact of parental health literacy on the early intervention referral process. Journal of Health Care for the Poor and Underserved, 24(3), 1053-1062. http://doi.org/10.1353/hpu.2013.0141.
