Caregiver Perceptions of Communication About Early Cerebral Palsy or High-Risk Designation in Infants.

IMPORTANCE

As early cerebral palsy (CP) detection becomes widespread, understanding caregiver perceptions about (1) early diagnosis or (2) high risk for CP (HRCP) designation is needed to identify areas for improvement in communication.

OBJECTIVE

To examine caregiver perceptions regarding clinician communication of a CP diagnosis or an HRCP designation in their high-risk infants.

DESIGN, SETTING, AND PARTICIPANTS: This prospective qualitative study was conducted from January 8 to October 25, 2024, at a level IV neonatal intensive care unit and high-risk infant follow-up program in an urban academic center. Caregivers were eligible for inclusion if (1) their infant received a CP diagnosis between January 3, 2022, and August 31, 2023, or (2) their infant received an HRCP designation but had at least 2 neuromotor assessments with normal findings by adjusted age 2 years or older with no CP diagnosis.

EXPOSURE

Caregivers' exposure to conversations with clinicians regarding CP in their infant.

MAIN OUTCOMES AND MEASURES

Caregivers' perceptions regarding a CP diagnosis and an HRCP designation were collected through in-person interviews, which underwent independent, directed, qualitative content analysis by 2 reviewers.

RESULTS

A total of 23 caregivers were interviewed (median [IQR] age, 34 [32-42] years; 19 women [82.6%]). The median (IQR) adjusted age of 12 infants at CP diagnosis was 6.07 (5.48-7.83) months and among 8 infants with an HRCP designation but no CP diagnosis, 7.50 (6.47-10.04) months. Four themes were identified: (1) degree of preparation for a future diagnosis or designation, (2) perceived negative communication practices, (3) caregivers' emotional response to a diagnosis or designation, and (4) caregivers' feedback on communication practices. Most caregivers recalled no previous CP counseling prior to a diagnosis or designation and often had a negative emotional response to these conversations. Caregivers in the CP group valued earlier diagnoses, while all but 1 in the HRCP group supported use of the designation but wanted subsequent conversations regarding when and whether the designation could be refuted.

CONCLUSIONS AND RELEVANCE

In this qualitative study, most caregivers accepted earlier conversations regarding CP but preferred the use of positive language and provision of practical next steps with follow-up. These findings suggest that clinicians should prioritize early, directed conversations about CP when clinical suspicion arises and focus on infant's strengths and time points for reevaluation.