Barriers to evaluation for early intervention services: parent and early intervention employee perspectives.

TitleBarriers to evaluation for early intervention services: parent and early intervention employee perspectives.
Publication TypeJournal Article
Year of Publication2012
AuthorsJimenez ME, Barg FK, Guevara JP, Gerdes M, Fiks AG
JournalAcad Pediatr
Date Published2012 Nov-Dec
KeywordsAdult, Child, Preschool, Communication, Delayed Diagnosis, Developmental Disabilities, Early Intervention (Education), Female, Health Personnel, Health Services Accessibility, Humans, Infant, Male, Middle Aged, Parents, Pediatrics, Professional-Family Relations, Qualitative Research, Referral and Consultation, Time-to-Treatment, Young Adult

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.

Alternate JournalAcad Pediatr
PubMed ID23159037