516 - Caregiver perceptions surrounding early cerebral palsy diagnosis and high risk designation in former NICU graduates: A qualitative study

Publication Number: 516.4199

Faith Kim, Columbia University Vagelos College of Physicians and Surgeons, New York, NY, United States; Sylvan Ryder, Columbia University, New York, NY, United States; Arden Marin, NewYork-Presbyterian Morgan Stanley Children's Hospital, New York, NY, United States; Annette Zygmunt, Columbia University Medical Center, new york, NY, United States; Katherine Guttmann, Icahn School of Medicine at Mount Sinai, New York, NY, United States

Background: Although providers can diagnose infants with cerebral palsy (CP) or designate them high risk for CP (HRCP) at an earlier age to allow for early intervention, the impact on caregivers is not well-known.

Objective: To explore caregiver perceptions surrounding CP diagnosis and HRCP designation in infants discharged from a NICU and followed by a high-risk infant follow-up clinic.

Design/Methods: This was a prospective single-center qualitative study involving semi-structured interviews that underwent directed content analysis until thematic saturation was reached. Caregivers were identified if their infant received either 1) a CP diagnosis or 2) a HRCP designation with no ultimate diagnosis between January 2022 and August 2023.

Results: Twenty-three caregivers were interviewed with 15 in the CP group and 8 in the HRCP group including 20 (87%) mothers. Of those interviewed, 13 (57%) identified as Black, while 13 (57%) identified as Hispanic. Highest level of maternal education was college or above in 12 (60%). Average adjusted age at diagnosis was 9.1±5.5 months. Out of 12 infants with CP, 6 (50%) were preterm, 3 (25%) had hypoxic-ischemic encephalopathy, and 10 (83%) had significant brain injury (e.g. grade 3-4 intraventricular hemorrhage). Average adjusted age at HRCP designation was 6.6 ± 2.4 months with prematurity as the primary risk factor among 7 (88%) infants. Four themes and multiple subthemes were identified in responses from all participants (Tables 1-3): 1) pre-existing perceptions surrounding CP; 2) communication; 3) emotional response to a diagnosis or designation; 4) reflection on diagnosis or designation. Majority of caregivers recalled no counseling regarding their infant’s CP risk prior to discharge while all but two recalled a negative emotional response to these conversations. Caregivers wanted more information regarding their infant’s future functional abilities and to focus on their infant’s strengths. Most caregivers in the CP group felt the diagnosis could have been made earlier. All but one in the HRCP group supported use of a designation but wanted follow-up to determine when and if the designation could be removed.

Conclusion(s): In this study, caregivers of high-risk infants felt unprepared for conversations regarding CP and wanted earlier conversations with consistent messaging and tangible steps. Although caregivers accepted use of a HRCP designation, they expressed uncertainty regarding their infant’s continued risk. Future work should be aimed to develop a standard tool that can be used in both scenarios to improve overall communication practices amongst providers and caregivers.

Table 1: Theme 1 describing pre-existing perceptions by caregivers


Table 2: Theme 2 describing communication practices experienced by caregivers


Table 3: Themes 3 and 4 describing caregivers' emotional response and reflection on a formal cerebral palsy diagnosis or a high risk for CP (HRCP) designation