What are the experiences of non-invasive ventilation for sleep-disordered breathing in children and young people and what outcomes matter? Perspectives of children and young people, their parents and the staff who care for them

IF 1.8 4区医学 Q2 PEDIATRICS Child Care Health and Development Pub Date : 2024-06-26 DOI:10.1111/cch.13292

Jessica Russell, Victoria Barber, Elaine Chan, Kate Khair, Garry Rendle, Jo Wray

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Abstract

Background

Non-invasive ventilation (NIV) for sleep-disordered breathing (SDB) in children and young people (CYP) can result in multiple health outcomes; however, adherence to NIV can be challenging. Suboptimally treated SDB may increase the risk of adverse consequences. Placing children's and parents' goals at the core of their SDB treatment may support adherence to NIV. To identify these health outcomes, it is necessary to gain a greater understanding of CYP's experiences of using NIV, whether they perceive any benefits from NIV use, as well as the outcomes that their parents and NIV staff identify as important.

Methods

Semi-structured qualitative interviews were conducted with nine CYP (aged 4–16 + years), 13 parents and nine healthcare professionals (HCPs); verbatim transcripts were analysed using Framework Analysis.

Results

CYP predominantly reported an improvement in levels of energy, focus and ability to concentrate whereas parents also identified outcomes of mood and behaviour. The majority of children showed understanding of the reasons for being prescribed NIV. A subset of children did not notice their SDB. The health outcomes identified by HCPs and parents that could result from improved overnight gas exchange are subjective measures that rely on parent and child report. Measuring these health outcomes focussed on the impact of improved sleep rather than measuring improved sleep itself.

Conclusions

It is important for HCPs administering NIV to ascertain whether CYP have noticed any of their sleep-disordered breathing symptoms and any improvements from using NIV, including the relationship between benefits and side effects. Focussing on promoting understanding for CYP who are unable to link their wellbeing to their previous night's sleep may be futile and HCP strategies should concentrate on the process of tolerating the device. Parents, CYP and HCPs should collaborate to identify treatment goals specifically tailored for the child and monitor any progress against these goals.

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儿童和青少年在使用无创通气治疗睡眠呼吸障碍方面有哪些经验？儿童和青少年、他们的父母以及照顾他们的工作人员的观点。

背景：对儿童和青少年（CYP）的睡眠呼吸障碍（SDB）进行无创通气（NIV）治疗可带来多种健康结果；然而，坚持进行无创通气治疗可能具有挑战性。未得到最佳治疗的 SDB 可能会增加不良后果的风险。将儿童和家长的目标作为 SDB 治疗的核心，可能有助于坚持 NIV 治疗。为了确定这些健康结果，有必要进一步了解儿童青少年使用 NIV 的经历、他们是否认为使用 NIV 有任何好处，以及他们的父母和 NIV 工作人员认为重要的结果：对 9 名儿童青少年（4-16 岁）、13 名家长和 9 名医疗保健专业人员（HCPs）进行了半结构式定性访谈；采用框架分析法对逐字记录誊本进行了分析：结果：青少年主要报告了精力、注意力和集中能力水平的提高，而家长也指出了情绪和行为方面的改善。大多数儿童表示理解开具 NIV 的原因。一部分儿童没有注意到他们的 SDB。由保健医生和家长确定的可通过改善夜间气体交换获得的健康结果都是主观的测量结果，依赖于家长和儿童的报告。衡量这些健康结果的重点是睡眠改善的影响，而不是衡量睡眠改善本身：对于实施 NIV 的保健人员来说，重要的是要确定儿童青少年是否注意到他们的睡眠呼吸障碍症状以及使用 NIV 后的任何改善，包括益处与副作用之间的关系。对于无法将自己的健康状况与前一晚睡眠联系起来的儿童青少年，集中精力促进他们的理解可能是徒劳无益的，因此保健护理人员的策略应集中在他们对设备的耐受过程上。家长、儿童青少年和保健医生应合作确定专门针对儿童的治疗目标，并对照这些目标监控任何进展。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Child Care Health and Development 医学-小儿科

CiteScore

3.40

自引率

5.30%

发文量

136

审稿时长

4-8 weeks

期刊介绍： Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.