EN
TÜRKÇE
Poster - 35
Parental perspectives of disease burden and healthcare experiences in young children with esophageal atresia
A Mohamed*, M Dellenmark-Blom**, J Bennett*, R Micalizzi*, K Woods*, L Cole***, L Frain*, J Yasuda****, P Ngo****, A Widenmann*****, G Slater*****, B Zendejas*
*Boston Children's Hospital, Department of Surgery, Esophageal and Airway Treatment Center, Boston, USA
**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
***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
Purpose: Children born with esophageal atresia (EA) may experience swallowing difficulties, gastroesophageal reflux, and respiratory disease. This study aimed to describe parental perspectives on disease burden and healthcare experiences in their everyday lives.
Method: Five focus groups (FGs) were conducted with 22 parents of children aged 0–2 years (n=2 FGs/9 parents) and 3–7 years (n=3 FGs/13 parents) treated for EA at a tertiary U.S. surgical center. A trained moderator facilitated the discussions which were audio-recorded, transcribed, and analyzed using descriptive content analysis.
Results: Parents reported 401 statements summarized into seven categories:
- Disease burden (144 statements):
1. Time, activities, and challenges around nutritional intake (22 parents, n=103): Managing their child’s eating abilities, achieving milestones, preventing and managing food impaction.
2. Dealing with respiratory symptoms and needs (12 parents, n=24): Recurring respiratory infections and efforts to reduce illness.
3. Living with vomiting problems (10 parents, n=17): Coping with frequent daytime and nighttime vomiting episodes.
- Healthcare experiences (257 statements):
4. Managing medical treatment and hospital care (20 parents, n=89): Navigating their child’s complex medical care.
5. Parents’ need to become advocates for their children (16 parents, n=52): Ensuring appropriate care and acting in their child’s best interest.
6. Perceived insufficiencies of healthcare providers outside specialized care (20 parents, n=63): Challenges with non-specialist providers.
7. Appreciation for multidisciplinary specialized care teams (18 parents, n=53): Positive experiences with comprehensive care teams.
Conclusion: This study highlights the multifaceted challenges of disease burden parents face when caring for children with EA. Key challenges include managing nutritional and respiratory needs, advocating for appropriate care, and navigating healthcare systems. These findings emphasize the need for accessible, multidisciplinary specialized care to effectively support these families.