Handberg Charlotte, Allergodt Kristin, Mahoney Annette, Højberg Ann-Lisbeth
Research and Development, National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.
Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
Int J Pediatr. 2025 May 30;2025:2604359. doi: 10.1155/ijpe/2604359. eCollection 2025.
Young people with neuromuscular diseases (NMDs) are especially at risk of being absent from school because of various symptoms, consequences of their disease, and frequent hospital visits. Growing up with a chronic disease can entail an increased risk of poor educational outcomes. The study is aimed to investigate factors of importance for continuing with upper secondary and/or higher education after primary education when living with NMD, including expectations, support, and accessibility. In addition, we wanted to assess educational absence, discontinuation of studies, motivation, and sense of belonging. This cross-sectional study was founded in a national online questionnaire survey based on patient-reported outcomes from people with NMD. Five hundred and one persons were invited to participate. Data were analyzed using IBM SPSS Statistics 26. All variables were presented as numbers and percentages. Responses were obtained from 172 (34.3%) young people with NMD. Twenty (11.6%) answered that their parents'/relatives' educational expectations for them were lower than their own expectations. Forty (24.4%) answered that their teachers seldom or never planned the lessons in ways that were inclusive for them. Forty-five (27.7%) responded that they were always or mostly more absent than their classmates in primary and lower secondary education. Thirty-two (24.8%) respondents who had started upper secondary education had dropped out of one or more educational programs. Thirty-one (18.6%) answered they seldom or never had a sense of belonging at school. Our results show novel knowledge on factors of importance for continuing education after primary school in young people with NMD. We found that teachers and parents carry a responsibility to show expectations to young people with NMD to ensure that the young people acquire adequate academic skills and actively participate in classroom activities. Supportive initiatives to prevent loneliness are important for keeping young people with NMD in the educational system.
患有神经肌肉疾病（NMDs）的年轻人尤其面临因各种症状、疾病后果和频繁就医而缺课的风险。患有慢性病长大可能会增加教育成果不佳的风险。本研究旨在调查患有NMDs的人在完成小学教育后继续接受高中和/或高等教育的重要因素，包括期望、支持和可及性。此外，我们还想评估缺课情况、辍学情况、学习动力和归属感。这项横断面研究基于一项全国性在线问卷调查，该调查基于NMD患者报告的结果。邀请了501人参与。使用IBM SPSS Statistics 26对数据进行分析。所有变量均以数字和百分比形式呈现。共收到172名（34.3%）患有NMDs的年轻人的回复。20人（11.6%）回答说，他们的父母/亲属对他们的教育期望低于他们自己的期望。40人（24.4%）回答说，他们的老师很少或从未以包容他们的方式备课。45人（27.7%）回答说，在小学和初中阶段，他们总是或大部分时间比同学缺课更多。32名（24.8%）开始接受高中教育的受访者退出了一个或多个教育项目。31人（18.6%）回答说，他们在学校很少或从未有过归属感。我们的研究结果显示了关于患有NMDs的年轻人小学毕业后继续教育重要因素的新知识。我们发现，教师和家长有责任向患有NMDs的年轻人表达期望，以确保他们获得足够的学术技能并积极参与课堂活动。预防孤独的支持性举措对于让患有NMDs的年轻人留在教育系统中很重要。
