Parents’ experiences of condition management in children born with esophageal atresia-tracheoesophageal fistula during their early childhood

Background Esophageal atresia-tracheoesophageal fistula (EA-TEF) is a rare congenital malformation of the esophagus and airways. Following surgical repair, children commonly face ongoing aerodigestive morbidity. To address the limited research in this area, this study explored parents’ experiences managing EA-TEF during early childhood, a time marked by high morbidity, and evolving parenting roles. Method As part of a larger project, five standardized focus groups were conducted with 22 parents of children aged 6 months to 7 years treated at a quaternary pediatric surgical center in U.S. Discussions were audio-recorded, transcribed, and analyzed using inductive manifest content analysis. Results The 22 parents made 629 unique statements about managing their child’s condition. Two themes emerged. The first theme described parents’ experiences of internal day-to-day responsibilities (303 statements) with two categories; Taking responsibility for the child’s health needs (213 statements) and Challenges and possibilities in understanding the child’s condition/symptoms (90 statements). The second theme involved engaging with healthcare and community systems to support their child’s health and development (326 statements), with three categories; Navigating and finding health care and community-based support programs (214 statements); Managing the child’s transition into contexts outside home: babysitters, daycare, and school (74 statements), and Defining the role of patient/peer support (38 statements). Conclusions Parents of children with EA-TEF described facing significant and ongoing responsibilities in managing their child’s aerodigestive health, while navigating complex healthcare, educational and patient/peer support to ensure their children receive adequate support. These findings highlight the need for timely, family-centered healthcare programs that address both medical and psychosocial challenges in early childhood.