Experiences of families of children with spinal muscular atrophy and the healthcare professionals supporting them during the COVID-19 pandemic: A nationwide study.

IF 0.8 Q4 PEDIATRICS
Camilla Udo, Malin Lövgren, Thomas Sejersen, Ulrika Kreicbergs
{"title":"Experiences of families of children with spinal muscular atrophy and the healthcare professionals supporting them during the COVID-19 pandemic: A nationwide study.","authors":"Camilla Udo, Malin Lövgren, Thomas Sejersen, Ulrika Kreicbergs","doi":"10.1177/18758894241299923","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to explore how parents and grandparents of children with spinal muscular atrophy (SMA) perceived how the COVID-19 pandemic affected their access to medication and physiotherapy. Further, healthcare professionals' experiences of the care of children with SMA during the pandemic were explored.</p><p><strong>Methods: </strong>Thirty-nine parents and three grandmothers of 28 children with SMA answered a web-based survey at two time-points. Telephone follow-ups were conducted with seven of the parents. Parallel focus group interviews were conducted with three interdisciplinary teams of healthcare professionals.</p><p><strong>Results: </strong>Results showed that 21 family members, 12 children, and nine parents in the study tested positive for COVID-19 during the pandemic. None of the children became seriously ill. All respondents, however, indicated that the pandemic had a significant impact on their everyday life. It made socializing difficult for the children and reduced their access to physiotherapy, hydrotherapy, and personal care attendants. The pandemic also influenced the location of some nusinersen treatments. The professionals reported that, although much of their work continued as usual, they experienced increased stress from their role in nusinersen assessments.</p><p><strong>Conclusion: </strong>These results suggest that it may be valuable to find ways for healthcare professionals to support each other and to support their efforts to help severely ill children and their families now that healthcare systems have opened up again.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 3","pages":"299-306"},"PeriodicalIF":0.8000,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pediatric rehabilitation medicine","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/18758894241299923","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/15 0:00:00","PubModel":"Epub","JCR":"Q4","JCRName":"PEDIATRICS","Score":null,"Total":0}
引用次数: 0

Abstract

Purpose: This study aimed to explore how parents and grandparents of children with spinal muscular atrophy (SMA) perceived how the COVID-19 pandemic affected their access to medication and physiotherapy. Further, healthcare professionals' experiences of the care of children with SMA during the pandemic were explored.

Methods: Thirty-nine parents and three grandmothers of 28 children with SMA answered a web-based survey at two time-points. Telephone follow-ups were conducted with seven of the parents. Parallel focus group interviews were conducted with three interdisciplinary teams of healthcare professionals.

Results: Results showed that 21 family members, 12 children, and nine parents in the study tested positive for COVID-19 during the pandemic. None of the children became seriously ill. All respondents, however, indicated that the pandemic had a significant impact on their everyday life. It made socializing difficult for the children and reduced their access to physiotherapy, hydrotherapy, and personal care attendants. The pandemic also influenced the location of some nusinersen treatments. The professionals reported that, although much of their work continued as usual, they experienced increased stress from their role in nusinersen assessments.

Conclusion: These results suggest that it may be valuable to find ways for healthcare professionals to support each other and to support their efforts to help severely ill children and their families now that healthcare systems have opened up again.

COVID-19大流行期间脊髓性肌萎缩症儿童家庭和支持他们的医疗保健专业人员的经历:一项全国性研究
目的:本研究旨在探讨脊髓性肌萎缩症(SMA)儿童的父母和祖父母如何感知COVID-19大流行如何影响他们获得药物和物理治疗。此外,还探讨了卫生保健专业人员在大流行期间照顾患有SMA的儿童的经验。方法:28名SMA患儿的39名家长和3名祖母在两个时间点接受了网络调查。对其中7位家长进行了电话随访。平行焦点小组访谈进行了三个跨学科小组的医疗保健专业人员。结果:结果显示,在大流行期间,研究中的21名家庭成员、12名儿童和9名父母的COVID-19检测呈阳性。没有一个孩子得了重病。然而,所有答复者都表示,这一流行病对他们的日常生活产生了重大影响。这使得孩子们难以社交,减少了他们获得物理治疗、水疗和个人护理服务的机会。大流行还影响了一些病人治疗的地点。专业人员报告说,虽然他们的大部分工作照常进行,但他们因在用户评估中扮演的角色而感到越来越大的压力。结论:这些结果表明,在医疗保健系统再次开放的情况下,寻找医护人员相互支持的方法,支持他们帮助重症儿童及其家庭的努力,可能是有价值的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
CiteScore
2.30
自引率
5.30%
发文量
139
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信