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