P2A160: From Heartbreak to Hope: Exploring the Needs of Parents in Fetal Cardiac Care

Background: Timely detection of critical congenital heart disease (CCHD) has significant survival benefit1; however, overall impact of fetal diagnosis and prenatal counseling on parental well-being remains poorly understood2,3. Our study aims to understand the complex care journey of families affected by fetal CCHD diagnoses to help inform future practice.

Methods: We invited parents with a prenatal CCHD diagnosis expected to require surgery in the first year of life, receiving care at a single-institution, to participate – prenatally or up to 1 year post-delivery, in this study. We utilized Experience Groups (EG) sessions – lightly facilitated group conversations wherein participants are the experts of their experiences – and semi-structured interviews to understand the fetal CCHD care journey. We created a codebook using initial data analysis of a subset of transcribed sessions. Conducting further analysis of the most frequent codes helped identify relationships between codes and distill themes central to the parent experience.

Results: A total of 23 parents from 18 English-speaking families were interviewed (table 1). Of these, 14 (61%) participated postnatally . We completed 8 semi-structured interviews with one/both parents and 3 EG sessions comprised of 3-5 participants each. Codes most frequently discussed were parental distress, positive care experiences, medical information, initial and fetal diagnosis experience, and logistical issues (table 2).
We found that parents expressed 1.4 times higher positive care experiences after the fetal cardiologist evaluation compared to initial diagnosis at obstetrician or maternal-fetal medicine appointments. The parental distress code (n=138) appeared most frequently and 37(61%) of distress references during the diagnosis journey, appeared for the initial diagnosis, compared to 24(39%) with fetal cardiologists’ diagnosis . Parents in all sessions stated receiving detailed information about the diagnosis and emotional support at the initial fetal cardiology visit alleviated stress and uncertainty from the initial diagnosis.
Nineteen (83%) parents expressed that logistics of appointment scheduling, travel, and waiting periods of 2-3 weeks to see a fetal cardiologist exacerbated their anxiety, uncertainty, and stress. Fifteen (65%) parents mentioned having access to a specialized care team of clinicians, nurse navigators, and social workers helped reduce stress and had a positive impact on their care experience. Of the 4 parents that did not express distress with logistical issues, 2(50%) stated that navigation from their care team was highly beneficial in reducing stress with coordinating care.

Conclusion: Our single-center qualitative study found visits with fetal cardiology and focus on timely multidisciplinary care have an overall positive impact on families. This work highlights the crucial need to rethink and redesign the care delivery system to meet family needs and alleviate stress and uncertainty from receiving a fetal CCHD diagnosis. Further work is needed to explore differences in care experiences for varied socioeconomic and cultural backgrounds to improve patient-centered care.