Abstract
Objective
To explore barriers to early intervention (EI) evaluation among referred infants and
toddlers.
Methods
We conducted semistructured interviews with parents of children referred for EI services
and with EI staff. We purposively sampled families according to whether they received
an EI evaluation. Families were recruited from a randomized controlled trial testing
implementation of developmental screening. Parents filled out demographic surveys.
Interviews were recorded, transcribed, and coded. We identified themes within and
across respondent groups using modified grounded theory.
Results
We reached thematic saturation after interviewing 22 parents whose child was evaluated
by EI, 22 not evaluated, and 14 EI employees. Mean child age at first referral was
16.7 months, and 80% were referred as the result of language concerns. We identified
5 primary themes: (1) Parents reported communication problems with their pediatrician,
including misinterpreting reassurance and not understanding the referral process;
(2) Many parents saw themselves as experts on their child's development and felt they
should decide whether their child pursues EI services; (3) Some families preferred
to wait for the developmental concern to resolve or work with their child on their
own prior to seeking EI services; (4) For ambivalent parents, practical obstacles
especially limited completion of evaluation, but highly motivated parents overcame
obstacles; and (5) EI employees perceived that families avoid evaluation because they
mistake EI for child protective services.
Conclusions
Communication between pediatricians and families that addresses practical logistics,
families' perceptions of their child's development and EI, and motivation to address
developmental concerns may improve the completion of EI referrals.
Keywords
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References
- Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening.Pediatrics. 2006; 118: 405-420
- Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents.3rd ed. American Academy of Pediatrics, Elk Grove Village, Ill2008
Individuals With Disabilities Education Act, 20 USC §1400 (2004).
- Early intervention for disabled infants and their families: a quantitative analysis.Pediatrics. 1987; 80: 650-658
- From Neurons to Neighborhoods: The Science of Early Child Development.National Academy Press, Washington, DC2000
- Investing in Our Children: What We Know and Don’t Know About the Costs and Benefits of Early Childhood Interventions.Rand, Santa Monica, CA1998
- Early intervention improves behavioral outcomes for preterm infants: randomized controlled trial.Pediatrics. 2012; 129: e9-e16
- Thirty-six-month outcomes for families of children who have disabilities and participated in early intervention.Pediatrics. 2005; 116: 1346-1352
- Prevalence of developmental delays and participation in early intervention services for young children.Pediatrics. 2008; 121: e1503-e1509
- Role of the medical home in family-centered early intervention services.Pediatrics. 2007; 120: 1153-1158
- The medical home.Pediatrics. 2002; 110: 184-186
- Reflections on well-child care practice: a national study of pediatric clinicians.Pediatrics. 2009; 124: 849-857
- Qualitative Research Design: An Interactive Approach.2nd ed. Sage, Thousand Oaks, Calif2005
Guevara J, Gerdes M, Hsu D, et al. Effectiveness of Developmental Screening in an Urban Setting: A Randomized Controlled Trial. Presented at: Pediatric Academic Societies Annual Meeting; May 1, 2011; Denver, CO.
- Grounded theory: Objectivist and constructivist methods.in: Denzin N.K. Handbook of Qualitative Research. Sage, Thousand Oaks, Calif2000: 509-535
- Purposeful Approach to the Constant Comparative Method in the Analysis of Qualitative Interviews.Quality Quantity. 2002; 36: 391-409
- Implementing developmental screening and referrals: lessons learned from a national project.Pediatrics. 2010; 125: 350-360
- The role of parents in the detection of developmental and behavioral problems.Pediatrics. 1995; 95: 829-836
- Primary care services promoting optimal child development from birth to age 3 years: review of the literature.Arch Pediatr Adolesc Med. 2001; 155: 1311-1322
- Communication about child development during well-child visits: impact of parents' evaluation of developmental status screener with or without an informational video.Pediatrics. 2008; 122: e1091-e1099
- Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango).Soc Sci Med. 1997; 44: 681-692
- Contrasting parents' and pediatricians' perspectives on shared decision-making in ADHD.Pediatrics. 2011; 127: e188-e196
- Improving child and parent mental health in primary care: a cluster-randomized trial of communication skills training.Pediatrics. 2008; 121: 266-275
- Sugar-coaters and straight talkers: communicating about developmental delays in primary care.Pediatrics. 2009; 124: e705-e713
- Incomplete specialty referral among children in community health centers.J Pediatr. 2011; 158: 24-30
Building Community-Based Medical Homes for Children. 2011: Available at: http://illinoisaap.org/2011/06/2011-medical-home-newsletter/. Accessed February 2, 2012.
- Building Electronic Information-Sharing Systems to Support Care Coordination in Illinois.National Academy for State Health Policy, Portland, Me2011 (Available at:) (Accessed September 4, 2012)
- “You get what you get”: unexpected findings about low-income parents’ negative experiences with community resources.Pediatrics. 2008; 122: e1141-e1148
Article info
Publication history
Accepted:
August 21,
2012
Received:
May 2,
2012
Identification
Copyright
© 2012 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.
