Challenges,Preparations,and Recommendations: Family Perspectives on Pediatric Cardiac Surgery Across Childhood and Adolescence

Abstract

Congenital heart disease (CHD), the most common birth defect globally, often requires hospitalization for cardiac surgery. While the stress of infant surgery is well-documented, less is known about the experiences of families with older children. We explored the experiences of families of children aged 3–17 hospitalized for cardiac surgery. Semi-structured interviews were conducted. Data were analyzed using qualitative content and thematic analysis. Thirty-two parents (30 mothers and 2 fathers) and 14 patients (10 males and 4 females) participated. Seven themes emerged across three domains: (a) Challenges: disruptions in family and social support, unexpected events and inadequate communication, and uncertainty and strong emotions; (b) Preparations: emotionally preparing yourself, your children and your family, and planning for hospitalization and surgical recovery; and (c) Recommendations: enhance communication and connection for support, and provide resources and education for empowerment. Findings highlight opportunities for targeted interventions to support families across child development.