Early Intervention Programs: Preemie Parents' Perceptions and Barriers to Participation

Abstract

Infants born prior to 37 weeks gestation are at risk for countless medical problems and developmental delays. In order to help minimize these delays and improve the child’s potential, the Individuals with Disabilities Education Act, Part C, funds Early Intervention (EI) Services. These services may include speech, physical therapy, occupational therapy, or developmental therapy, among others. Purpose and Objective: While numerous studies show the benefits of EI therapies, little is known about barriers to EI participation, what the parents of these children who participate in EI think, or how to improve EI services. This study attempts to answer these questions. Methods: Surveys regarding EI were posted to three preemie parent organizations social media pages, and 140 surveys were returned. These surveys were analyzed for both quantitative and qualitative answers. Qualitative answers were coded and themes were garnered. Results: A total of 148 participants took the survey, and 76% had children that had participated or currently participate in EI. Of the parents who answered their child did not attend EI, most state there was no EI services near them, their child did not qualify, or the EI services were of poor quality. Of the EI parent surveys, most parents (73%) were happy with their child’s EI and their child’s progress, and would recommend EI to others. Most children had EI therapy at least weekly, and were referred to EI prior to leaving the NICU. Parents felt as though their child benefitted in nearly all domains. In addition to the benefits to their child, EI parents also felt as though therapy helped decrease their stress level, gave them a benchmark to measure their child’s progress and connected them with other professionals for their child. Some parents also provided recommendations to improve EI: decrease eligibility requirements, improve communication with parents, provide continuity of care, and create a bridge program for children three and up until they reach school age. Conclusions: With these suggestions, providers can help improve current EI services. Primary care providers should ensure children who are at risk for delays are referred, and EI services should improve communication with parents and enhance continuity of care.