"It's a journey": Psychosocial perspectives on parenting a young child with esophageal atresia.

BACKGROUND

Esophageal atresia (EA) is a rare congenital condition often accompanied by lifelong medical challenges. The complex and ongoing needs of children with EA place substantial demands on their parents. The purpose of this study was to explore the psychosocial experiences of parents caring for a child with EA during early childhood.

METHODS

A qualitative descriptive design was employed involving five focus groups with 22 parents of children aged 0–7 years with EA. Manifest content analysis with an inductive approach was used. Data saturation was achieved across and within groups.

RESULTS

Three major categories emerged: 1) A journey that changes over time, capturing the evolving emotional and practical challenges that parents faced; 2) Emotional experiences, highlighting a range of emotional responses navigated by parents and 3) Impact on family and social life, describing the strained family dynamics, altered social interactions, and parents’ feelings of isolation.

CONCLUSION

Parenting a young child with EA presents profound emotional and social challenges that extend well beyond the neonatal period. Integrated mental health services, peer support initiatives, and comprehensive, family-centered multidisciplinary care should be considered standard components of EA management, given the profound and lasting impact of the condition on family functioning and well-being.