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Updated: Jun 1, 2026
A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
Published on: January 12, 2018
When services start: A pilot study of parent perspectives on early intervention timing for very preterm infants
Tara N Shepherd1, Regina L Triplett2, Mary J Goldschmidt2
1Washington University in St. Louis, Department of Pediatrics, 660 South Euclid Avenue, Saint Louis, MO, 63110, USA.
Insights
Infants facing social disadvantage and medical complexity experience delays in accessing early intervention (EI) services after NICU discharge. Targeted outreach is needed to ensure equitable access for high-risk infants in EI programs.
Area of Science:
- Neonatal care
- Developmental pediatrics
- Public health
Background:
- Early Intervention (EI) programs support neurodevelopment in high-risk infants.
- Infants with social disadvantage and medical complexity may face delayed EI services post-NICU discharge.
Purpose of the Study:
- Examine associations between social disadvantage and EI contact among NICU graduates.
- Explore early trends in EI access based on medical risk.
Main Methods:
- Prospective pilot study of 40 NICU graduate families.
- Survey assessed awareness and contact by state-funded EI programs.
- Timing of EI contact analyzed by Area Deprivation Index (ADI) and intraventricular hemorrhage (IVH) severity.
Main Results:
- 95% of families aware of EI, 70% contacted (median 63 days).
- 37.5% of families in highest disadvantage quartile (Q4) lacked contact (median 94 days).
- Infants with high-grade IVH faced longest delays (median 83 days) and highest social disadvantage (median ADI 85).
Conclusions:
- Delays in EI contact disproportionately affect infants with high social and medical risk.
- Highlights need for multiple outreach mechanisms for equitable EI access.
- Suggests structured home rehabilitation may benefit families post-discharge.
Background:
Early Intervention (EI) programs aim to support neurodevelopment in high-risk infants. However, infants with greater social disadvantage and medical complexity may face delays in receiving timely services after neonatal intensive care unit (NICU) discharge.
Objective:
To examine associations between social disadvantage and EI contact among NICU graduates, and to explore early trends in access by medical risk.
Methods:
In this prospective pilot study, 40 families of NICU graduates completed a survey assessing awareness of, and contact by, state-funded EI programs. Timing of EI contact was examined both overall and stratified by Area Deprivation Index (ADI) and severity of intraventricular hemorrhage (IVH).
Results:
While 95% of families were aware of EI, only 70% had been contacted at a median of 63 days post-discharge. National ADI was broken into quartiles with quartile 1 representing the lowest disadvantage and quartile 4 representing the highest disadvantage. A total of 37.5% of families in quartile 4 were not contacted by their local EI program within a median of 94 days of discharge. Infants with high-grade IVH had the longest delays to contact (median = 83 days) and greatest social disadvantage with median ADI of 85.
Conclusion:
Delays in EI contact were most pronounced among infants facing the greatest social and medical risk. These findings from this pilot study highlight the need for multiple mechanisms for outreach and suggest potential benefits of a structured home rehabilitation program to support families during the critical post-discharge transition period.
