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 qualitative 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 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.

中文翻译：

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探索先天性食管闭锁成人心理健康的专题分析

背景

患有罕见的慢性疾病会对心理健康和心理健康产生重大影响。人们越来越认识到，食管闭锁 (EA) 是一种罕见的先天缺陷，通常伴有气管食管瘘 (TEF)，是一种复杂的健康状况，需要从儿科护理到成年后终生就医。鉴于一个人的身心健康之间存在相互关系，本研究的目的是更好地了解 EA/TEF 出生的成年人的心理健康状况。

方法

与 EA/TEF 患者慈善机构合作设计并传播了一项国际在线定性调查。使用反身和归纳主题分析对定性数据进行分析，以探索研究问题“出生时患有 EA/TEF 如何影响成年后的心理健康？”

结果

共有 92 名天生患有 EA/TEF 的成年人完成了来自 11 个不同县的在线调查。分析过程中产生了五个主题：“医疗保健专业人员的负面体验”、“对手术疤痕的看法”、“吞咽困难的心理社会后果”、“医疗创伤的遗产”和“面对逆境的韧性”。

结论

结果表明，EA/TEF 出生的成年人可能面临情绪挑战，这会对他们的心理健康和心理健康产生负面影响。还发现一些患有 EA/TEF 的成年人通过对不良经历的积极重新评估表现出弹性。目前的研究表明，有必要采用多学科方法来护理出生时患有 EA/TEF 的成年人，并讨论了未来研究的方向。