Department of Language and Cognition, University College London, Chandler house, 2 Wakefield Street, London, WC1N 1PF, UK; Great Ormond Street Hospital for Children, Great Ormond Street, London, WC1N 3JH, UK.
Department of Language and Cognition, University College London, Chandler house, 2 Wakefield Street, London, WC1N 1PF, UK.
J Pediatr Surg. 2022 Dec;57(12):792-799. doi: 10.1016/j.jpedsurg.2022.08.013. Epub 2022 Aug 24.
Feeding difficulties are widely acknowledged following oesophageal atresia/tracheo-oesophageal fistula repair. However, little is understood about the nature and severity of these difficulties. This study explored feeding in children with oesophageal atresia/tracheo-oesophageal fistula from the parent perspective.
In collaboration with a patient support group, data were collected using a research-specific online discussion forum. Thematic analysis was used to code the data and identify themes.
One hundred and twenty-seven parents registered for the online forum, of whom 83 (65%) provided demographic data. Seventy-four (89%) of responders were mothers, 75 (90%) were of white ethnicity, 65 (78%) were from the UK. Six key themes were identified: feeding is a traumatic experience, feeding my child is scary, feeding is isolating and filled with uncertainty, feeding outside of the home is difficult, feeding associated emotions, developing coping strategies. Parents described features of medical, nutritional, feeding skill and psychosocial dysfunction across all stages of eating/drinking development. They described how their child's feeding difficulties had an impacted their own well-being. An interactional model of feeding difficulties in OA/TOF is proposed.
Exploring parent experiences provides rich data from which to expand understanding of the complex nature of feeding difficulties in OA/TOF. Feeding should be viewed as a dyadic process, occurring within a family system. Intervention for feeding difficulties should be family-centred, addressing parental anxiety, trauma and uncertainty, as well as the child's underlying medical/surgical needs to optimise outcome. Further study of clinical correlates with parental experience is required.
IV (non-experimental, qualitative).
食管闭锁/气管食管瘘修复术后，患儿普遍存在喂养困难。但人们对这些困难的性质和严重程度知之甚少。本研究从家长的角度探讨了食管闭锁/气管食管瘘患儿的喂养问题。
通过与一个患者支持小组合作，使用专门的研究在线讨论论坛收集数据。采用主题分析法对数据进行编码和识别主题。
共有 127 位家长注册了在线论坛，其中 83 位（65%）提供了人口统计学数据。74 位（89%）应答者为母亲，75 位（90%）为白人，65 位（78%）来自英国。确定了 6 个关键主题：喂养是一种创伤性体验、喂养孩子令人恐惧、喂养孤立且充满不确定性、在家外喂养困难、与喂养相关的情绪、发展应对策略。家长描述了在进食/饮水发展的所有阶段的医疗、营养、喂养技能和心理社会功能障碍的特征。他们描述了孩子的喂养困难如何影响了他们自己的幸福感。提出了一个 OA/TOF 喂养困难的交互模型。
探索家长的经验提供了丰富的数据，有助于更深入地了解 OA/TOF 喂养困难的复杂性质。喂养应被视为一种双相过程，发生在家庭系统中。喂养困难的干预措施应以家庭为中心，解决父母的焦虑、创伤和不确定性，以及儿童潜在的医疗/手术需求，以优化结果。需要进一步研究与父母经验相关的临床相关性。
IV（非实验性、定性）。
Zotero 插件