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A mixed methods exploration of early feeding and swallowing in children born with oesophageal atresia/tracheo-oesophageal fistula

Stewart, Alexandra; (2025) A mixed methods exploration of early feeding and swallowing in children born with oesophageal atresia/tracheo-oesophageal fistula. Doctoral thesis (Ph.D), UCL (University College London). Green open access

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Abstract

Background Feeding and swallowing difficulties are widely recognised as long-term morbidities associated with OA/TOF, impacting on respiratory health, growth, and quality of life. However, evidence for their type, nature, prevalence, or severity is limited. This study aimed to investigate the nature of the swallow dysfunction in OA/TOF and explore the impact that the swallow dysfunction has on feeding and mealtimes within a family context. Methods This study used a convergent, parallel mixed methods design. Work package 1: An embedded exploratory, sequential study of the impact of feeding difficulties from a parent perspective. Qualitative data were collected using an online forum and used to develop a questionnaire to determine contributing factors and prevalence of experiences. Work package 2: A mixed methods systematic review synthesised existing data relating to swallow impairment, use of mealtime adaptations and eating and drinking-related quality of life. Work package 3: A prospective, observational study of swallow physiology. Twelve infants born with OA/TOF underwent swallow assessment at 2-4 months and 8-10 months of age using videofluoroscopy and high-resolution impedance manometry. Feeding outcomes were assessed at 12 months. Results Parents described feeding difficulties throughout early childhood which led to anxiety and trauma in approximately 35%. Lower feeding-related quality of life was evident. Mealtime adaptations were reported by approximately 50% of individuals with OA/TOF across the lifespan. Prospective study identified oesophageal stage swallow impairment in all children and oro-pharyngeal impairment in 25%. Synthesised data generated a bidirectional, dyadic model of eating and drinking demonstrating child and parent factors determine outcome. Conclusions This study provides novel data describing the nature of swallow impairment in OA/TOF. It also highlights the impact that this has on the child’s broader eating and drinking experience and parent well-being. Evaluation and treatment of eating and drinking as a dyad is supported to optimise outcome.

Type: Thesis (Doctoral)
Qualification: Ph.D
Title: A mixed methods exploration of early feeding and swallowing in children born with oesophageal atresia/tracheo-oesophageal fistula
Open access status: An open access version is available from UCL Discovery
Language: English
Additional information: Copyright © The Author 2025. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request.
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
URI: https://discovery-pp.ucl.ac.uk/id/eprint/10206431
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