Examining Parents' Experiences and Information Needs Regarding Early Identification of Developmental Delays: Qualitative Research to Inform a Public Health Campaign
Open accessAbstract
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.
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Lists based on median (50th percentile) age milestones might encourage a wait-and-see approach because half of children are not expected to achieve the milestone by that age.
“For example, lists based on median (50th percentile) age milestones might encourage a wait-and-see5 approach because half of children are not expected to achieve the milestone by that age.”
From Evidence-Informed Milestones for Developmental Surveillance Tools (2022) · cites this paper as [5]
The Results (Phase 1: Focus Group Findings; page unavailable) report that some providers told parents to “wait and see” after they raised developmental concerns. The paper does not link that advice to lists based on median-age milestones or discuss the claim that half of children have not reached a milestone at its median age. (LLM, conf=0.85)
Experimental — accuracy not yet measuredUse of the same strategy is intended to discourage the wait-and-see approach and could prevent worry for children older than the average age of attainment of a milestone but not likely to be at risk for delays.
“Use of this same strategy is intended to discourage the wait-and-see approach and could prevent worry for children older than the average age of attainment of a milestone but not likely to be at risk for delays.1,5”
From Evidence-Informed Milestones for Developmental Surveillance Tools (2022) · cites this paper as [5]
The Results (Phase 2: In-Depth Interview Findings; page unavailable) say the materials encouraged parents not to wait or ignore possible developmental problems. The Discussion also reports parents’ negative experiences with providers’ “wait and see” responses. Neither passage addresses preventing worry in children older than the average age of milestone attainment who are unlikely to have delays. (LLM, conf=0.86)
Experimental — accuracy not yet measuredThe CDC checklists support developmental surveillance and other important components of the early identification process by pediatricians and other early childhood professionals, including developmental promotion, parent education and engagement, communication of developmental progress and concerns, and developmental screening.
“The CDC checklists support developmental surveillance and other important components of the early identification process by pediatricians and other ECPs, including developmental promotion, parent education and engagement, communication of developmental progress and concerns, and developmental screening.7,5,9,72–75”
From Evidence-Informed Milestones for Developmental Surveillance Tools (2022) · cites this paper as [5]
The Results (Phase 1: Focus Group Findings; page unavailable) describe the CDC Milestones checklist as an aid for parents monitoring development, and the Discussion says such materials can help parents discuss concerns with providers. The paper also links the campaign to asking providers about screening, but it discusses developmental screening tools separately; it does not establish that the CDC checklists themselves support screening by pediatricians and other early childhood professionals. (LLM, conf=0.83)
Experimental — accuracy not yet measured
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- Authors
- Raspa, M., Levis, D. M., Kish-Doto, J., Wallace, I., Rice, C., Barger, B., Green, K. K., & Wolf, R. B.
- Affiliations
- Centers for Disease Control and Prevention (US)
- RTI International (US)
- Corresponding author
- Raspa, Melissa
- Wallace, Ina
- Venue
- Journal of Developmental & Behavioral Pediatrics
- Published
- 2015-10
- Volume
- 36
- Issue
- 8
- Pages
- 575-585
- ISSN
- 0196-206X (ISSN-L)
- PMC
- PMC4633015
- OpenAlex
- W2410011031
- Cited by
- 63
- References
- 24
- Citations by year
- 2026: 3 · 2025: 6 · 2024: 5 · 2023: 7 · 2022: 10 · 2021: 6 · 2020: 8 · 2019: 7 · 2018: 1 · 2017: 7 · 2016: 2 · 2015: 1
- FWCI
- 4.55
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Developmental & Behavioral Pediatrics (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (CC999999)
- U.S. Public Health Service (200-2007-20016/020)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Infant Development and Preterm Care
- Keywords
- developmental delay, early detection, parental experiences, parental information needs, developmental milestones, early warning signs, provider communication, special education services, campaign materials, children with disabilities
- MeSH terms
- Adult, Centers for Disease Control and Prevention, U.S., Developmental Disabilities, Female, Health Education, Health Personnel, Humans, Male, Parents, Public Health, United States, Focus Groups, Qualitative Research, Early Diagnosis
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