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The Impact of Congenital Esophageal Atresia on the Family Functioning
Anna Rozensztrauch1, Robert Śmigiel2, Michał Błoch2
1Department of Paediatrics, Division of Neonatology, Faculty of Health Science, Wroclaw Medical University, Wrocław, Poland.
Insights
Associated malformations and feeding issues significantly impact families of children with esophageal atresia (EA) after surgery. These conditions affect emotional, social, cognitive, and communication domains for parents and caregivers.
Area of Science:
- Pediatric Surgery
- Family Medicine
- Quality of Life Research
Background:
- Esophageal atresia (EA) research primarily focuses on surgical outcomes.
- Limited data exists on the long-term impact of EA on patient families.
- Understanding family impact is crucial for comprehensive patient care.
Purpose of the Study:
- To investigate the influence of associated malformations, feeding problems, and prematurity on families of children post-EA surgery.
- To assess the impact of specific comorbidities like cardiac and skeletal impairments.
- To evaluate the effect of tracheoesophageal fistula (TEF) on family functioning.
Main Methods:
- Study included 73 parents of children who underwent EA surgery.
- An Authors-Designed Questionnaire (ADQ) collected medical and sociodemographic data.
- The PedsQL™ Family Impact Module (PedsQL-FIM) assessed family functioning.
Main Results:
- Cardiac impairment significantly affected family emotional functioning (p=0.037).
- Skeletal impairment showed significant correlations with social (p=0.021), cognitive (p=0.009), and communication (p=0.023) domains.
- Families of children with TEF reported lower emotional functioning scores (p<0.05).
Conclusions:
- Associated anomalies and feeding problems significantly impact family functioning in EA cases.
- Specific comorbidities like cardiac and skeletal impairments require targeted family support.
- Addressing feeding issues is vital for improving the quality of life for families affected by EA.
Purpose:
Most of the research in the field of esophageal atresia (EA) is focused on diagnostic problems and surgery. There is scarce literature addressing the impact of EA on the lives of families of patients. The aim of this paper is to investigate whether the presence of underlying associated malformations, disease-specific feeding problems and prematurity would have a significant influence on the family of a child after surgical repair of EA.
Design And Methods:
The study sample consisted of 73 participants who were parents of children after surgery of EA. The impact of EA on families was assessed using an Authors-Designed Questionnaire (ADQ) to collect medical and sociodemographic background data as well as standardized questionnaire: the PedsQL™ Family Impact Module (PedsQL-FIM).
Results:
The presence of cardiac impairment significantly (p = 0.037) affects the functioning of the family in the emotional domain. The coexistence of skeletal impairment seems to have the greatest impact on the functioning of the family, three statistically significant correlations have been demonstrated: (p = 0.021) - in the social domain, (p = 0.009) - in the cognitive domain and (p = 0.023) - in the domain of communication. The families of patients with tracheoesophageal fistula (TEF) had the statistically lower (p < 0.05) score of functioning in the emotional domain than those with children without TEF.
Conclusion:
Feeding problems and the presence of associated anomalies significantly affect the functioning of the family of the child with EA.
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