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

Journal: European journal of pediatrics

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Affiliated Institutions:  Division of Pediatric Surgery, Tygerberg Hospital, Stellenbosch University and Tygerberg Hospital, Francie Van Zijl Drive, PO Box , Tygerberg, , South Africa. cdevos@sun.ac.za. Division of Surgery, Stellenbosch University, Francie Van Zijl Drive, PO Box , Cape Town, , South Africa. Esophageal Atresia Global Support Groups (EAT), Sommerrainstrasse , , Stuttgart, Germany. Department of Pediatrics and Child Health, Tygerberg Hospital, Stellenbosch University and Tygerberg Hospital, Francie Van Zijl Drive, PO Box , Tygerberg, , South Africa. Center for Medical Ethics and Law, Faculty of Health and Sciences, Stellenbosch University, Tygerberg Campus, Tygerberg, , South Africa.

Abstract summary 

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.

Authors & Co-authors:  de Vos Corné C de Vos Werner W Widemann-Grolig Anke A van Wyk Lizelle L Sidler Daniel D Goussard Pierre P

Study Outcome 

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Statistics
Citations :  Faugli A, Emblem R, Bjørnland K, Diseth TH (2009) Mental health in infants with esophageal atresia. Infant Ment Health J 30:40–56. https://doi.org/10.1002/imhj.20202
Authors :  6
Identifiers
Doi : 10.1007/s00431-024-05640-1
SSN : 1432-1076
Study Population
Female
Mesh Terms
Other Terms
Emotional support;Esophageal atresia;Support groups
Study Design
Study Approach
Country of Study
Publication Country
Germany