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Updated: Nov 21, 2025
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Intervention experiences among children with congenital and neonatal conditions impacting brain development: patterns
Shruti S Vyas1,2, Meghan K Ford1, Emily W Y Tam3,4
1Division of Neurology, Department of Psychology, The Hospital for Sick Children, Toronto, ON, Canada.
Insights
Families of children with congenital or neonatal conditions utilize therapies like speech and physical, but face barriers such as work and transportation. More parent support is needed for these neurodevelopmental conditions.
Area of Science:
- Pediatric Neurodevelopmental Disorders
- Rehabilitation Medicine
- Family Support Services
Background:
- Children with congenital or neonatal conditions often face neurodevelopmental challenges.
- Early and school-age interventions are crucial for managing these conditions.
- Understanding intervention utilization and barriers is vital for improving care.
Purpose of the Study:
- To examine intervention utilization and barriers in families of children with congenital/neonatal conditions.
- To identify factors influencing intervention access, including injury severity and sociodemographics.
- To explore future care directions and support needs for these families.
Main Methods:
- Surveyed 62 parents of children (3-9 years) with neonatal stroke, HIE, or CHD.
- Assessed intervention use, perceived barriers, and support needs.
- Considered child's condition severity, adaptive functioning, and family factors.
Main Results:
- Approximately 80% of children used therapies (speech, occupational, physical); <10% used psychological therapies.
- Common barriers included time off work, childcare, and transportation.
- Parents of more severely affected children reported higher intervention use and more barriers; over half desired more parent support.
Conclusions:
- Gaps exist in early and school-age intervention utilization for children with neurodevelopmental conditions.
- Clinical care needs to address identified barriers and enhance support systems.
- Future interventions should focus on comprehensive family support and accessible services.
Objective:
The current study examined reported patterns of utilization and barriers to early and school-age interventions, as well as directions for future care, among families of children with congenital or neonatal conditions with known-risk for poor neurocognitive development. The impact of the child's severity of injury, condition and adaptive functioning, as well as family sociodemographic factors were considered.
Methods:
The sample included 62 parents (53 mothers, 5 fathers, 4 mother-father pairs) of children diagnosed with neonatal stroke, hypoxia ischemic encephalopathy (HIE), and congenital heart disease (CHD) ranging in age between 3 to 9 years (mean age = 4.5 years, SD = 1.82).
Results:
In this sample, approximately 80% of children were reported to have had utilized one or more therapies. The most frequent services utilized included: (a) speech and language therapy, (b) occupational therapy, and (c) physical therapy. Less than 10% of sample reported utilizing any psychological therapies. Common family barriers to all interventions included time off work, lack of childcare, and transportation. Parents of children with more severe injury or condition reported that their children were utilizing a greater number of interventions and also perceived a greater number of barriers. Over half of the parents expressed a need for more parent support groups, remote psychosocial services, and individualized psychological therapy for themselves or their family.
Conclusions:
Findings highlight patterns of utilization and perceived gaps in early and school-age interventions for children with congenital or neonatal conditions that impact neurodevelopment. Direction for clinical care and improved intervention opportunities are discussed.
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