Perspectives of challenges in counseling for congenital heart defects

Joyce L. Woo, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago,, Northwestern University Feinberg School of Medicine, 225 E. Chicago Ave, Box 21, Chicago, IL, 60611, USA. jwoo@luriechildrens.org.
Rupali Gandhi, Advocate Health - MidwestFollow
Shelvonne Burton, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago,, Northwestern University Feinberg School of Medicine, 225 E. Chicago Ave, Box 21, Chicago, IL, 60611, USA.
Adithya Sivakumar, Rush Medical College, Chicago, IL, USA.
Sarah Spiewak, Advocate Health - MidwestFollow
Renee Wakulski, Advocate Health - MidwestFollow
William A. Grobman, Division of Maternal-Fetal-Medicine, Department of Obstetrics and Gynecology, The Ohio State University College of Medicine, Columbus, OH, USA.
Matthew M. Davis, Nemours Children's Health, Wilmington, DE, USA.
Angira Patel, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago,, Northwestern University Feinberg School of Medicine, 225 E. Chicago Ave, Box 21, Chicago, IL, 60611, USA.
Joyce T. Johnson, Division of Cardiology, Department of Pediatrics, Johns Hopkins All Children's Hospital, St. Petersburg, FL, USA.
Stefani Samples, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago,, Northwestern University Feinberg School of Medicine, 225 E. Chicago Ave, Box 21, Chicago, IL, 60611, USA.
Lynn M. Yee, Division of Maternal-Fetal-Medicine, Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

Affiliations

Advocate Christ Children's Hospital

Abstract

Prior work regarding counseling patients about congenital heart defects (CHD) has focused on their perceptions about accurate communication of cardiac anatomy, and the emotional support received from the provider. The objectives of this study were to identify the additional CHD counseling-specific challenges and areas for future intervention, using a practical communication framework. This is a secondary analysis of qualitative data provided by caretakers of infants who received congenital heart surgery from 2019 to 2020 in the Chicagoland area. While the survey in the primary study pertained to barriers in obtaining prenatal diagnosis, respondents with both prenatal and postnatal diagnosis reported challenges to effective counseling. Qualitative data measuring counseling challenges were collected from semi-structured phone interviews. Thematic analysis was performed using an inductive approach. Themes were organized into five domains using SPIKES (Setting, Perception, Invitation, Knowledge, Empathy, and Summarize/Strategy), a previously validated framework to help clinicians effectively break bad news. Among 160 survey respondents, 35 (21.9%) reported a challenge during CHD counseling that they received. In total, 12 challenges were identified and spanned all six SPIKES domains. The three most common challenges were as follows: perception of repeated imaging studies for accurate diagnosis or management (n = 19, Knowledge), the lack of cardiologist presence at the time of initial CHD detection (n = 8, Setting), and insufficient information provided about the CHD diagnosis (n = 7, Knowledge). Patients perceive counseling as a key component of prenatal diagnosis of CHD and identify the challenges that exist at all stages of the counseling process. These findings suggest that effective counseling extends beyond conveying information about anatomy and prognosis.

Type

Article

PubMed ID

38907869

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