525 - Parent Perspectives of NICU Follow-Up Practices for Children with Hypoxic-Ischemic Encephalopathy

Publication Number: 525.5990

Joel Harvey, University of New England College of Osteopathic Medicine, Biddeford, ME, United States; Alexa K. Craig, The Barbara Bush Children's Hospital at Maine Medical Center, Scarborough, ME, United States; Andrea C.. Pardo, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Niranjana Natarajan, University of Washington School of Medicine, Seattle, WA, United States; Danielle Guez-Barber, Children's Hospital Colorado, Aurora, CO, United States; Betsy Pilon, Hope for HIE, West Bloomfield, MI, United States

Background: Evidence-based recommendations for follow-up care after NICU admission for hypoxic-ischemic encephalopathy (HIE) do not exist and parental preferences for follow-up care have not been prioritized.

Objective: To survey parents of children with HIE regarding their experiences of post-NICU follow-up.

Design/Methods: An electronic survey instrument was developed and sent to parents through Hope for HIE and social media. De-identified demographic data was collected and analyzed using descriptive statistics. Participation in follow up at hospital discharge, one year and at school age was assessed. Thematic analysis was performed on parents’ free text responses in response to an open-ended question asking for thoughts about or recommendations to improve follow-up care.

Results: The survey was available from 10/11/24-/10/25/24. There were 258 parent responses representing birth years from 2002-2024. The majority of children were characterized as having moderate (35%) or severe (40%) HIE, seizures (67%) and abnormal MRI (93%) (Table 1). Slightly more than half of the children have moderate or severe effects from HIE (Table 1). 60% of parents define long-term outcomes as continuing into adulthood (Table 1). From hospital discharge, to one year and again at school age, there is an overall decline in the percentage of participation in multiple therapies and clinical appointments (Table 2).

In thematic analysis, the following themes emerged: Access to Therapies and Specialized Services, Need for Comprehensive Education and Communication, Advocacy and Empowerment, Integrated and Holistic Care Approach and a Desire for Supportive Structures (Table 3). Parents also highlighted the importance of peer support: “I think connecting parents with others who have similar situations, be it through groups on social media or in person, is extremely helpful in aiding them to have a better understanding of how things can look moving forward.”

Conclusion(s): The parents who responded to the survey represent a cohort of children moderately to severely affected by HIE. More than half consider long term outcomes extending into adulthood, yet participation in therapy services and clinical appointments declines by school-age. The thematic analysis demonstrates a perceived need for more access to interdisciplinary, coordinated and longitudinal care. Peer support is often cited as a beneficial resource for parents navigating the experience of HIE and long-term follow-up.

Table 1. Demographic information from parent survey


Table 2: Parent survey responses for services received at hospital discharge, age one year and at school age.
*All responses from participants are presented. We did not exclude responses for children were not yet old enough to meet the milestone of either age one year or school age.

Table 3. Sample quotations from thematic analysis