Parent experiences of the esophageal atresia journey during the early post-natal period: results from a support group perspective

Abstract

Surgically repaired esophageal atresia (EA) is associated with chronic esophageal and respiratory morbidity that require ongoing management. The care of chronically ill children can exert considerable stress on parents, thereby potentially affecting their mental well-being. In response to this, disease-specific support groups have emerged with the aim to bring together individuals facing similar challenges, facilitating the exchange of experiences within a nurturing environment, and providing essential emotional support. In the context of this international collaborative study, we investigated the role played by EA-specific support groups in promoting the emotional well-being of EA families. An anonymous online survey was distributed through a network comprising 12 international EA support groups affiliated with the Federation of Esophageal Atresia and Tracheoesophageal Fistula (EAT) during May and August of 2022. In the study, 96 parents from 23 different countries completed the survey. Fifty-six percent indicated a lack of interaction with other EA families during the initial diagnosis, with 91% expressing the belief that such contact would have been beneficial. Participants exhibited a unanimous recognition of the critical role played by disease-specific support groups in navigating the emotional journey associated with EA.Conclusion: The findings of this global survey align with existing literature, reaffirming the beneficial impact of disease-specific support groups tailored for EA patients and their families on their emotional well-being. These groups provide a valuable platform for the exchange of personal experiences and narratives, delivering advantages to both those who share their stories and those who receive this valuable information.What is Known:• Parents are exposed to several stressors during the neonatal period.• Emotional well-being of EA families is important.What is New:• EA support groups play a valuable role in the emotional well-being of EA families.• Family-centered care of neonates should also include older siblings of neonates in NICU.