Intervention experiences among children with congenital and neonatal conditions impacting brain development: patterns of service utilization, barriers and future directions

Abstract

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.

Keywords:

• Neonatal brain injury
• congenital heart disease
• intervention
• support
• future needs
• parents

Acknowledgments

The authors thank the families who informed and participated in this research. We also thank the Neonatal Follow-Up Clinic and Neurology teams at SickKids for their support.

Disclosure statement

The authors have nothing to declare.

Funding/grant awarding bodies

This work was supported by the Medical Psychiatry Alliance, a collaborative health partnership of the University of Toronto, the Centre for Addiction and Mental Health, the Hospital for Sick Children, Trillium Health Partners, The Ontario Ministry of Health and Long-Term Care, and an anonymous donor.