Caregiver Perceptions of Communication About Early Cerebral Palsy or High-Risk Designation in Infants
Faith Kim1, Sylvan Ryder1, Arden Marin1
1Department of Pediatrics, NewYork-Presbyterian Morgan Stanley Children's Hospital/Columbia University Medical Center, New York.
Insights
Caregivers want earlier, positive communication about cerebral palsy (CP) diagnoses or high risk for CP (HRCP) designations. They prefer practical next steps and reevaluation timelines, emphasizing strengths-based discussions.
Area of Science:
- Neonatal Neurology
- Developmental Pediatrics
- Child Health Outcomes
Background:
- Early detection of cerebral palsy (CP) is increasingly common.
- Understanding caregiver perspectives on communication regarding CP diagnosis and high risk for CP (HRCP) designation is crucial for improving care.
- Current communication strategies may not adequately prepare caregivers for these designations.
Purpose of the Study:
- To examine caregiver perceptions of clinician communication when their infant receives a CP diagnosis or an HRCP designation.
- To identify areas for improvement in how clinicians discuss these outcomes with families.
Main Methods:
- A prospective qualitative study involving in-person interviews with caregivers of infants diagnosed with CP or designated as HRCP.
- Data were collected from caregivers at a level IV NICU and high-risk infant follow-up program.
- Interviews were analyzed using directed, qualitative content analysis by two independent reviewers.
Main Results:
- Twenty-three caregivers were interviewed, with infants diagnosed with CP or designated HRCP at median adjusted ages of 6.07 and 7.50 months, respectively.
- Key themes included lack of preparation, negative communication experiences, emotional responses, and feedback on practices.
- Most caregivers desired earlier conversations, preferred positive language, and sought practical next steps and clear reevaluation timelines.
Conclusions:
- Caregivers are receptive to earlier discussions about CP and HRCP designations.
- Communication should be positive, strengths-based, and include clear plans for follow-up and reevaluation.
- Prioritizing directed, early conversations can enhance caregiver understanding and emotional preparedness.
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.
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