EN
TÜRKÇE
Poster - 34
Understanding the emotional journey of parents of young children born with esophageal atresia: insights from a focus group study
J Bennett*, R Micalizzi*, B Zendejas*, K Woods*, L Cardoni*, L Cole**, L Frain*, A Mohamed*, J Yasuda***, P Ngo***, A Widenmann****, G Slater****, M Dellenmark-Blom*****
*Boston Children's Hospital, Department of Surgery, Esophageal and Airway Treatment Center, Boston, USA
**Department of Surgery, Boston Children's Hospital, Boston, MA, USA
***Division of Gastroenterology, Hepatology, and Nutrition; Boston Children's Hospital; Boston, MA, USA
****EAT (Esophageal Atresia Global Support Groups), Sommerrainstr. 61, 70374 Stuttgart, Germany
*****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.