Developmental delay
2040 Partners for Health is working to improve health for people living, working, and playing in the neighborhoods around the Anschutz Medical Campus. We partner with community members to learn about issues that concern them and create solutions. 2040 Partners for Health works closely with its Community Council, a group of local residents who live in the neighborhoods served by our organization.
Recent discussions revealed that identifying children with developmental concerns and getting them the services they need is an area of interest and concern in the community. Our goal through conducting interviews is to learn more about community beliefs regarding children’s development and about services available to children with delayed development. We also want to learn how children with developmental delay can best access the services and supports that will help them achieve their full potential.
Normal development falls within a range. Children whose development falls below this range could be provided with services and support to help optimize their development. More precisely these children may have skills deficits in the areas of language (how they communicate their needs and/or how they process and receive information), cognition/learning, social, emotional, and motor development. Nationally, 1 in 4 children under the age of 5 years is at risk for experiencing developmental delay (DD), a condition in which children do not achieve timely motor, language, cognitive, social, emotional, or adaptive skills.
The early identification of DD, and initiation of early intervention (EI) services are essential for optimizing the health and well-being of these children. Evidence-based developmental screening guidelines, such as those put forth by the American Academy of Pediatrics, are intended to support decision-making for children with DD, yet implementation of these guidelines in pediatric primary care settings does not guarantee that children with DD will be referred for or receive EI services. In fact, less than 25% of children likely eligible for EI receives these services. Moreover, significant racial, ethnic and socioeconomic disparities exist in the early identification of children with DD, and in their use of EI services.
Children representing racial or ethnic minorities, and children whose families have limited socioeconomic resources are less likely to have delays identified, and less likely to receive EI. The mechanisms underlying these disparities are not well-understood, however, there is mounting evidence that parental health beliefs (knowledge and attitudes) play an important role.
Evidence-based developmental screening guidelines and therapy recommendations, presented during the well-child visit, likely use concepts and language that lack relevance among many traditionally underserved communities. If parents perceive that the information conveyed during a well-child visit does not reflect their values or preferences, they may be less likely to integrate this information into appraisals of their child’s development and need for services.
The primary objective of this pilot project is to inform the dissemination and evaluation of a community-designed parent decision aid that (1) enhances shared decision-making between caregivers, family members, and service providers, and (2) improves early identification and intervention for children with DD. We hope to achieve this objective through the following specific aims: (1) identify children with DD who live in our community footprint and who are likely to forego EI services; (2) determine the acceptability of a community-designed parent decision aid that translates developmental screening guidelines and EI recommendations into culturally-appropriate messaging; and (3) determine the feasibility of implementing this community-designed parent decision aid in pediatric primary care settings.
These activities align with our broader goal of developing a community translational research agenda that raises awareness, highlights the importance of community-based solutions, and reduces racial/ethnic disparities in the early identification of children with DD, and their use of
EI services.