Crumpton Jessica, Wray Jo
North Wales Clinical Psychology Programme, Bangor University, 43 College Road, Bangor, Gwynedd, LL57 2DG, Wales, UK.
Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Int J Pediatr Otorhinolaryngol. 2019 Dec;127:109658. doi: 10.1016/j.ijporl.2019.109658. Epub 2019 Aug 23.
To date, no review has focused exclusively on the child's reported experience of living with respiratory assistance. The objective of this study was to review empirical studies exploring children's experiences and perceptions of living with respiratory assistance.
Literature searches (1980-2017) of databases (PubMed, Web of Science, PsycINFO and CINAHL) resulted in 1,750 references. Studies were included if they used qualitative methods to explore children's (under 18 years) experiences of living with respiratory assistance, such as tracheostomies and/or those who were ventilator dependent. Studies that focused only on parents, carers or other family member's perspectives, included only adults, used only quantitative methods or were not published in the English language were excluded. Reference lists of relevant studies were reviewed. Each study meeting criteria was reviewed and assessed and key themes were extracted and grouped.
Seven studies were included in this review. Synthesis of the data identified four main themes: children's understanding of respiratory assistance, identity, social experiences and service delivery. Most children recognised the important function of respiratory assistance on their physical health. They spoke of positive social experiences and some of the challenges they had experienced. Children discussed their experiences of healthcare providers in terms of what was helpful to them and provided suggestions, based on their experience, for future service provision.
This review identified the valuable contribution children's perspectives make to the growing evidence-base in this area. Further in-depth explorations are needed to provide greater understanding about children's experiences of living with respiratory assistance. Research exploring the journey of a young person with respiratory assistance is important in developing knowledge and service provision in this field.
迄今为止，尚无综述专门聚焦于儿童所报告的呼吸辅助生活经历。本研究的目的是综述探索儿童呼吸辅助生活经历和认知的实证研究。
对数据库（PubMed、科学网、PsycINFO和护理学与健康领域数据库）进行文献检索（1980 - 2017年），共得到1750篇参考文献。若研究采用定性方法探索18岁以下儿童的呼吸辅助生活经历，如气管造口术和/或依赖呼吸机的儿童的经历，则纳入研究。仅关注父母、照料者或其他家庭成员观点、仅纳入成年人、仅使用定量方法或未以英文发表的研究被排除。对相关研究的参考文献列表进行了审查。对每项符合标准的研究进行了审查和评估，并提取和归纳了关键主题。
本综述纳入了7项研究。数据综合分析确定了四个主要主题：儿童对呼吸辅助的理解、身份认同、社会经历和服务提供。大多数儿童认识到呼吸辅助对其身体健康的重要作用。他们谈到了积极的社会经历以及所经历的一些挑战。儿童从对自己有帮助的方面讨论了他们与医疗服务提供者的经历，并根据自己的经验为未来的服务提供提出了建议。
本综述确定了儿童观点对该领域不断增长的证据基础所做出的宝贵贡献。需要进一步深入探索，以更深入地了解儿童呼吸辅助生活经历。探索呼吸辅助青少年历程的研究对于该领域的知识发展和服务提供具有重要意义。
