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Poster - 29
Understanding the emotional journey of parents of young children born with esophageal atresia: insights from a focus group study
John Bennett 1, Rosella Micalizzi 1, Benjamin Zendejas 1, Kaylee Woods 1, Lauren Cardoni 1, Lianne Cole 2, Leah Frain 1, Abdimajid Mohamed 1, Jessica Yasuda 3, Peter Ngo 3, Anke Widenmann 4, Graham Slater 4, Michaela Dellenmark-Blom 5
1 Boston Children's Hospital, Department of Surgery, Esophageal and Airway Treatment Center, Boston, USA
2 Department of Surgery, Boston Children's Hospital, Boston, MA, USA
3 Division of Gastroenterology, Hepatology, and Nutrition; Boston Children's Hospital; Boston, MA, USA
4 EAT (Esophageal Atresia Global Support Groups), Sommerrainstr. 61, 70374 Stuttgart, Germany
5 Department of Pediatric Surgery, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden Institute of Clinical Sciences, Department of Pediatrics, Queen Silvia Children's Hospital, Gothenburg, Sweden
Purpose: Children with esophageal atresia (EA) often experience chronic aerodigestive morbidities. This study explored the emotional journey of parents during their child’s early years-an under-researched area.
Method: Following ethical approval (P00048407), 22 parents of EA children treated at a tertiary U.S. surgical center participated in five focus groups (FGs) stratified by child age (0-2 years: n=9 parents; 3-7 years: n=13 parents/primary anastomosis or complex repair: n=17 parents; esophageal replacement: n=5 parents). A trained facilitator moderated the FGs, which were audio-recorded, transcribed, and descriptively analyzed (content analysis).
Results: Twenty-two parents described 181 emotional experiences across these categories:
· Concerns, worries, and fears (19 parents/n=62 experiences)
· Hard, tough, and brutal (15 parents/n=55 experiences)
· Stress, trauma, and panic (13 parents/n=28 experiences)
· Frustration, anger, and hate (12 parents/n=17 experiences)
· Letdowns, dissatisfaction, and sadness (4 parents/n=4 experiences)
· Feeling different, awkward, and horrible (4 parents/n=4 experiences)
· Need for mental health support (3 parents/n=4 experiences)
· Guilt and feeling bad (3 parents/n=4 experiences)
· Isolation and resignation (2 parents/n=3 experiences)
These emotions stemmed from transitioning to parenthood (n=43), feeding difficulties(n=28), healthcare providers(n=19), respiratory infections(n=13), breathing difficulties (n=12), swallowing difficulties (n=12), daycare/school (n=12) and developmental concerns (n=11). Additional situations were reported <10 times.
21/22 parents also described a journey (n=170 experiences) involving uncertainty, milestones, and setbacks, which over time helped them develop resilience, gratitude, and personal growth.
Conclusion: Parents of young children with EA face significant emotional challenges, especially during early transition to parenthood. Family-centered interventions are essential to prevent long-term maladaptation.