Supporting Family Engagement in Early Intervention

Early intervention (EI) for infants with or at risk for developmental delay rests on the assumption that providing treatments and services as early as possible will optimize outcomes for children and families. However, research has consistently reported substantial differences between the number of children who are referred for EI and the number who ultimately receive services.1–4 The path to services can be delayed at several points owing to problem recognition, referral, communication with families, assessment to determine eligibility, development of an Individualized Family Service Plan, and service provision or coordination.5 Although professionals are responsible for the program, families play an essential role in communicating with professionals, advocating for their child, contributing to treatment plans, conducting home-based interventions, and coordinating with service providers.6In this issue of Pediatrics, Guevara and colleagues7 report results from a randomized clinical trial (RCT) to determine whether a family navigation (FN) program reduced the time between referral for EI services and subsequent completion of a multidisciplinary evaluation (MDE) in a sample of low-income and racially diverse children younger than 36 months. The study is based on the following 2 assumptions: (1) lack of family engagement can prevent or delay EI entry; and (2) a family support program could accelerate MDE completion, allow EI to begin earlier than usual, lengthen service duration, and improve outcomes for children. Children in the FN group were significantly more likely than children in the control group to have a completed MDE, and, as a result, the proportion of all children (irrespective of MDE completion) who began EI services was greater in the FN group. However, of those who completed the MDE, no differences were found in the odds of initiating EI services, the average duration of EI services, or developmental outcomes for children. The article prompts several reflections to better understand the implications of these findings and recommendations for research and practice.First, although Guevara and colleagues’ study provides important information regarding the opportunities and limitations of what might be possible during a specific stage of the family’s journey, ie, the time between referral and an MDE, family engagement and support need to be built into every step of the process. For example, many parents are the first to notice that something is amiss in their child’s behavior or development. Sometimes, primary care providers tell them that what they observe could easily fall within the reference range of development and might suggest a wait-and-see approach. A subsequent pediatric screening test indicating risk for developmental delay should prompt a referral to EI, but, in many cases, that does not occur.8For parents, their concerns are real. They need a primary care provider who listens, affirms the importance of their perspectives, and works with parents to determine a course of action. These early interactions affect parents’ confidence in their own ability to advocate for their child, which is the first step in what can be an extended journey. Losing confidence at this point likely makes it more difficult for parents to engage productively in later steps of the referral and evaluation process. A more comprehensive assessment of supports for family engagement throughout the referral, eligibility, and service continuum is needed to understand the benefits of an integrated system with a common commitment to family-centered care.9Second, the study raises the question of whether families need support to change or whether professionals and service systems need to change. Family engagement is needed because both health care and EI systems are under-resourced, often highly regulated, and variable in their assumptions and approaches to family involvement. Of course, the problem is bidirectional: families are frustrated when professionals are not supportive, and professionals are frustrated when families are not engaged. Ultimately the solution will need to be a multicomponent focus on both systems change and family support.Third, the fact that the study found no effect on child outcomes is not surprising, especially given the relatively short duration of the study. EI should provide consultation; service coordination; and developmental, therapeutic, and family support services, all of which are individualized according to the needs and preferences of families. However, delays in the initiation of services are frequent, and many would argue that the number of services provided cannot meet the children’s needs. Determining the real impact of EI on children is difficult given the virtual impossibility of a no-treatment group and the complexities of treatment models and implementation studies.10,11 The study should not be interpreted as lack of evidence for earlier identification or the efficacy of EI.If the focus of FN is on family support, a more proximal question would be the extent to which the program leads directly to outcomes for families. Ideally, families should (1) understand their child’s strengths, abilities, and special needs; (2) know their rights and advocate effectively for their child; (3) help their child develop and learn; (4) have support systems; and (5) gain access to desired services and activities in their community.12 Such outcomes are important benefits of EI, and, hopefully, the FN program could help achieve them. It is only when family outcomes are attained that it would be reasonable to expect a downstream effect on service initiation and, ultimately, benefits for children.Since its inception, EI has been challenged to answer complex questions regarding rationale, timing, focus, efficacy, and implementation.13,14 How early is early enough? What is meant by intervention? Is there an optimal intervention model? By what metrics should EI be evaluated? How can a program of individualized and highly variable services be evaluated? What is the relative importance of child vs family benefit? How much intervention (eg, hours per week) is needed to make a difference? When resources are constrained, what services should be prioritized? Definitive answers to these questions are difficult to obtain because of factors such as the range of severity and types of disabilities, the heterogeneous population of families, variation in the meaning of intervention, lack of agreement on benchmarks for success, and inadequacies in national data collection.2 Family engagement is a common thread across all of these questions. An implementation science agenda is needed to demonstrate the benefits of family-centered practices and support for family engagement throughout the continuum of referral, eligibility, and service provision.