Investigating Clinician-Parent Communication at the Time of Prenatal Diagnosis of Complex Congenital Heart Disease
Congenital heart disease (CHD) occurs in nearly one percent of infants, twenty-five percent of whom have complex CHD (cCHD), with life-threatening symptoms requiring invasive intervention. Prenatal diagnoses of cCHD elicit severe parental psychological distress and are associated with decreased physical and mental health for both parents and their children. Parents commonly cite uncertainties surrounding illness as a central source of their distress, and those who encounter more uncertainties report greater psychological distress. How fetal cardiology teams discuss and support families regarding uncertainties may mitigate parental psychological distress.
This study aims to investigate how to optimally communicate about uncertainties surrounding illness and respond to parental psychological distress during prenatal cCHD diagnosis. I will evaluate what parents consider optimal communication using concept mapping – a participatory, structured, mixed-methods approach (Aim 1). I will discuss my findings with fetal cardiology clinicians via focus groups and then develop and administer a survey to determine clinician experiences with, attitudes about, and training needs regarding communication during prenatal cCHD diagnosis (Aim 2). The proposed career development plan includes multidisciplinary mentorship, didactic education, and research experience to: (1) Develop expertise in mixed-methods research, including concept mapping and focus groups; (2) Advance skills in survey design, administration, and analysis; and (3) Gain a foundational understanding of responding to parental psychological distress in medical settings.
This research will generate empirical recommendations to develop communication-focused interventions regarding cCHD in a future K23 grant, to improve parental mental health and child well-being.
Kelly W. Harris, MD, MS, is an Assistant
Professor of Pediatrics at the University of Pittsburgh School of Medicine and an
attending physician in pediatric palliative care at the Children’s Hospital of
Pittsburgh. Dr. Harris received a BA with Honors in both Religious Studies and
Biology from the University of Chicago, and she received an MD with a
Certificate in Biomedical Ethics from Vanderbilt University School of Medicine.
She completed her residency training in Pediatrics at Vanderbilt University
Medical Center and her fellowship training in Hospice and Palliative Medicine
at the University of Pittsburgh Medical Center. She subsequently obtained a
Master of Science in Clinical Research during a postdoctoral research
fellowship at the University of Pittsburgh. Dr. Harris aims through her
research to improve the long-term health and well-being of families impacted by
prenatal diagnoses of serious illness. Her current focus is on understanding
and optimizing clinician-parent communication at the time of a prenatal
diagnosis of complex congenital heart disease.