Navigating family life with Hypoplastic Left Heart Syndrome: A qualitative study

Hypoplastic Left Heart Syndrome (HLHS) is a critical congenital heart abnormality that, prior to 1980, offered no treatment options beyond comfort care. Surgical advancements have since transformed the prognosis, yet the lived experience of affected families remains complex and multifaceted. This study aims to elucidate the psychosocial challenges accompanying the biomedical management of HLHS, exploring both family and provider perspectives to identify opportunities for more holistic care. We conducted semi-structured interviews with five families and two healthcare providers involved in HLHS management a New England health system. Interview transcripts were analyzed inductively to identify emergent themes, with a focus on the lived experience of families and the perceived role of providers in influencing this experience. Our study illuminates the extensive psychosocial challenges and emotional distress encountered by families dealing with HLHS, indicating a disparity between the advanced biomedical treatments available and the broader, more integrative care needs of patients. Despite healthcare professionals' technical proficiency, there exists a pivotal need for empathetic engagement and support that encompasses the full scope of the patient and family experience. Our findings advocate for an integrated care model that incorporates George Engel's biopsychosocial aspects of health, aligning with the emotional and psychological needs of families. The study underscores the importance of socially conscious care and suggests that enhancing empathetic communication and support in clinical practice can improve both patient outcomes and family well-being in the context of chronic and complex conditions like HLHS.