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.
| Original language | English |
|---|---|
| Article number | 110474 |
| Journal | Journal of Psychosomatic Research |
| Volume | 145 |
| Early online date | 31 Mar 2021 |
| DOIs | |
| Publication status | Published - 5 May 2021 |
Bibliographical note
Funding Information:NO FUNDERS LISTED.
We would like to thank all the adults born with EA who took part in the study, and the Tracheo-Oesophageal Fistula Support (TOFS), Registered Charity in England and Wales, for their invaluable help with participant recruitment.
Funding
We would like to thank all the adults born with EA who took part in the study, and the Tracheo-Oesophageal Fistula Support (TOFS), Registered Charity in England and Wales, for their invaluable help with participant recruitment.
Keywords
- Chronic health condition
- Esophageal atresia
- Mental health
- Psychological well-being
- Qualitative research
- Rare disease
ASJC Scopus subject areas
- Clinical Psychology
- Psychiatry and Mental health
