DOZ047.23: How esophageal atresia affects the family life

Abstract

Abstract Background Tracheoesophageal fistula (TEF) with esophageal atresia (EA) is seen in about 35,000 births. The impact of caring for children after surgical repair of EA is poorly understood and the literature regarding this area is scarce. Mortalities are now mostly attributable to any associated anomalies or prematurity, but morbidity and quality of life (QoL) are important to address. Objective This study aimed to investigate whether syndromic EA, feeding problems, and prematurity have a significant influence on the family of a child after surgical repair of EA. Methods Ethical approval was obtained. This cross-sectional study consisted of 73 participants (mean mothers’ age = 28, SD = 5 years; mean fathers’ age = 31, SD = 6 years) who were parents of children after surgery of EA. The impact of EA on families was assessed using an author-designed questionnaire (ADQ) to collect medical and sociodemographic background data as well as a standardized questionnaire, the PedsQLTM Family Impact Scale (PedsQL-FIM). Results Cardiac malformations associated with EA significantly (P = 0.037) affect the functioning of the family in the emotional domain. Skeletal malformations have the greatest impact on the family functioning. 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 TEF had the statistically lower (P < 0.05) score of functioning in the emotional domain than those without TEF. Nonhealth factors frequently included changes in daily activities and deterioration of social position affected caregivers. Conclusions Difficulties with feeding and the presence of associated anomalies significantly affect the functioning of the family of the child with EA.