Table_1_The experience of children using long-term non-invasive ventilation: a qualitative study.DOCX

ObjectivesTo identify factors to optimize long-term non-invasive ventilation (LT-NIV) use by exploring the experience of children using LT-NIV and their parents.
Study design and methodsA qualitative framework analysis method was used. Children aged 8–12 years who used LT-NIV for at least 3-months and their parents/guardians were approached to participate. Thematic analysis of data derived from focus group interviews, conducted separately for children and parents, was performed. Findings were coded and grouped into identified themes.
ResultsData analysis identified four themes: (1) “The double-edged sword,” which identified benefits and challenges of LT-NIV use; (2) “Feeling different,” where children and parents described fears, frustrations, and concerns including emotional and social implications, and physical changes; (3) “It's not just about the mask,” highlighted the influence of equipment issues, including the mask interface, headgear, tubing and humidity, and their impact on tolerance and use of LT-NIV; and (4) “Through the eyes of experience—children and parents as experts for change,” which captured ideas for the functional and aesthetic improvement of the equipment including the need for pediatric specific technology.
ConclusionsLT-NIV use has two sides; it helps to improve lives though requires an investment of time and commitment to ensure success. Investing in pediatric-specific equipment needs to be a priority as do alliances between healthcare providers, children who use LT-NIV, and their families. Future technology development and studies of adherence need to consider the experiences of children and their families to reduce the challenges and support optimal use of LT-NIV.

研究目的 本研究旨在通过探讨长期无创通气（long-term non-invasive ventilation, LT-NIV）使用者儿童及其照护父母的使用体验，识别可优化LT-NIV长期使用的相关影响因素。
研究设计与方法 本研究采用质性框架分析法。招募使用LT-NIV至少3个月的8~12岁儿童及其父母/监护人参与研究。分别针对儿童与父母开展焦点小组访谈，对采集所得数据进行主题分析，对访谈内容进行编码并归类为相应主题。
研究结果 数据分析共识别出4个主题：（1）“双刃剑效应”：明确了LT-NIV使用的获益与挑战；（2）“异样感”：儿童与父母均描述了相关恐惧、困扰与顾虑，包括情绪与社会层面的影响及躯体变化；（3）“不止关乎面罩”：强调了包括面罩接口、头带、管路及湿化装置在内的设备相关问题对LT-NIV耐受性与使用情况的影响；（4）“以体验之视角——儿童与父母为变革专家”：涵盖了设备功能与外观改良的相关建议，例如对儿科专用技术的需求。
研究结论 LT-NIV的使用具有两面性：其可改善患儿生活质量，但同时亦需投入时间与精力以保障使用效果。优先研发儿科专用设备，以及构建医疗照护机构、LT-NIV使用者儿童及其家庭之间的协作联盟，均为当前重点工作。未来的技术研发与依从性相关研究，需充分考量儿童及其家庭的使用体验，以降低使用挑战、支持LT-NIV的最优应用。