343 - Bridging the Gap: Addressing social determinants of health to improve healthcare delivery and out-comes following prenatal diagnosis of congenital heart disease

Poster Number: 343
Publication Number: 343.1782

Background: Congenital heart disease (CHD) is the leading cause of birth defect-related mortality in the U.S. and accounts for ~5% of all infant deaths. CHD infant mortality is highest for racial and ethnic minorities (REMs). Non-Hispanic Black (NHB) and Hispanic children have 25-50% increased risk-adjusted infant mortality compared to Non-Hispanic-Whites (NHW). We have previously described that NHB race is associated with increased complications, mortality, and length-of-stay (LOS), as well as how racial isolation further amplifies outcome disparities.

Objective: The overarching objective of this study is to understand barriers to care and sources of resilience for parents of children born with CHDs in North Carolina (NC) through exploration of the lived experience of patients and families.

Design/Methods: We conducted a two-part focus group series with parents of CHD infants treated in the Duke Pediatric Cardiac Intensive Care Unit (PCICU). Semi-structured focus group guides were co-developed by specialists in neonatology, pediatric cardiology, and social work. Two parallel focus group tracks, one in English and one in Spanish, were conducted. Focus groups covered the care trajectory from the family’s initial diagnosis through discharge from the PCICU and focused on issues related to navigating care pathways, communication, and support. Focus group transcripts were transcribed, translated to English, and input into NVIVO v12. A grounded theory approach was used for coding transcripts. Each focus group was separately coded by three team members, with disagreement in assigned themes settled by a consensus

Results: Seven family members participated in the focus groups, representing a range of cardiac diagnoses.(Table 1) The focus groups identified barriers in care as well as sources of coping and resilience. Identified barriers included poor communication around the time of diagnosis, unclear care pathways, unmet cultural or language needs, and a lack of parental mental health support.(Table 2) Coping was demonstrated by finding community with other CHD families, through religion, and by identifying a trusted and caring medical provider.(Table 3) Core themes were identified in both the English and Spanish language focus groups; however, for families who could not communicate in English, existing barriers and the value of a trusted provider were amplified.

Conclusion(s): REM patients with CHD in NC experience gaps in care related to clinical outcomes, health service utilization, appropriate communication with providers, and psychosocial support.