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Examining Parents' Experiences and Information Needs Regarding Early Identification of Developmental Delays: Qualitative Research to Inform a Public Health Campaign

Raspa, Melissa PhD*; Levis, Denise M. PhD; Kish-Doto, Julia PhD*; Wallace, Ina PhD*; Rice, Catherine PhD; Barger, Brian PhD†,‡; Green, Katie K. MPH; Wolf, Rebecca B. MA

Journal of Developmental & Behavioral Pediatrics: October 2015 - Volume 36 - Issue 8 - p 575–585
doi: 10.1097/DBP.0000000000000205
Original Articles

Objective: The purpose of this study was to assess the approach and materials of Centers for Disease Control and Prevention's “Learn the Signs. Act Early.” (LTSAE) health education campaign, which aims to improve awareness of developmental milestones and early warning signs of developmental delay among parents of young children.

Methods: We conducted 2 phases of qualitative research. Focus groups assessed the campaign's objectives by exploring the experiences of parents with children who have developmental delays or disabilities to determine facilitators of and barriers to identification. In-depth interviews were conducted with parents of typically developing children, who reviewed campaign materials and provided feedback on appropriateness, appeal, and clarity with regard to the campaign's objectives.

Results: Phase 1: Parents were typically the first to express concern about their child's development, and most talked with their child's health care provider. Two categories of health care providers emerged: those who proactively asked about a child's development, used tools to facilitate conversations, and made referrals, and those who did not ask about development, told parents to “wait and see,” and did not provide information about services and supports. Few parents knew about special education services before identification. Phase 2: Participants found the campaign materials appealing, but were unclear about how to act early and why acting early was important.

Conclusions: Results affirmed LTSAE's evidence-based approach to educating parents about child development. Additional campaign considerations include providing more information about how to act early and why acting early is important and enhancing outreach to providers to help them communicate with concerned parents.

*RTI International, Research Triangle Park, NC;

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA;

Disability Research and Dissemination Center, University of South Carolina, Columbia, SC.

Address for reprints: Melissa Raspa, PhD, 3040 Cornwallis Rd, Research Triangle Park, NC 27709; e-mail: mraspa@rti.org.

This investigation was supported by the Centers for Disease Control and Prevention (Contract 200–2007-20016/020).

Disclosure: The authors declare no conflict of interest.

See the related commentary “Towards a Critical Reframing of Early Detection and Intervention for Developmental Concerns” by Paul H. Dworkin on page 637.

Received March , 2015

Accepted July , 2015

Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.