Jessica Russell, Victoria Barber, Elaine Chan, Kate Khair, Garry Rendle, Jo Wray
{"title":"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。","authors":"Jessica Russell, Victoria Barber, Elaine Chan, Kate Khair, Garry Rendle, Jo Wray","doi":"10.1111/cch.13292","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>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.</p>\n </section>\n </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":"50 4","pages":""},"PeriodicalIF":1.8000,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"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\",\"authors\":\"Jessica Russell, Victoria Barber, Elaine Chan, Kate Khair, Garry Rendle, Jo Wray\",\"doi\":\"10.1111/cch.13292\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Background</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusions</h3>\\n \\n <p>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.</p>\\n </section>\\n </div>\",\"PeriodicalId\":55262,\"journal\":{\"name\":\"Child Care Health and Development\",\"volume\":\"50 4\",\"pages\":\"\"},\"PeriodicalIF\":1.8000,\"publicationDate\":\"2024-06-26\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Child Care Health and Development\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/cch.13292\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"PEDIATRICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Child Care Health and Development","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/cch.13292","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PEDIATRICS","Score":null,"Total":0}
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
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.
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.
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