A thematic analysis exploring the psychological well-being of adults born with esophageal atresia.

BACKGROUND

Living with a rare and chronic health condition can have a significant impact on psychological well-being and mental health. There is a growing understanding that Esophageal Atresia (EA), a rare birth defect often accompanied by a Trachea-Esophageal Fistula (TEF), is a complex health condition that requires lifelong medical attention beyond pediatric care into adulthood. Given the reciprocal relationship between one's physical and psychological well-being, the aim of this study was to develop a better understanding of the mental health of adults born with EA/TEF.

METHODS

An international online survey was designed and disseminated in collaboration with an EA/TEF patient charity. The qualitative data was analyzed using a reflexive and inductive Thematic Analysis to explore the research question "How can being born with EA/TEF affect psychological well-being in adulthood?"

RESULTS

A total of 92 adults born with EA/TEF completed the online survey from 11 different counties. Five themes were generated during the analysis: 'Negative Experience with Healthcare Professionals', 'The Perception of Surgical Scars', 'The Psychosocial Consequences of Dysphagia', 'The Legacy of Medical Trauma', and 'Resilience in the Face of Adversity'.

CONCLUSION

The results indicated that adults born with EA/TEF might face emotional challenges that can negatively affect their psychological well-being and mental health. It was also found that some adults born with EA/TEF demonstrate resilience through positive reappraisal of adverse experiences. The current study suggests that a multidisciplinary approach to the care of adults born with EA/TEF is necessary and directions for future research are discussed.