Factors of Importance for Continuing Education After Primary School in Young People With Neuromuscular Diseases-Patient-Reported Outcomes From a National Survey

Abstract

Rationale: 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. Aims: 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. Method: 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. Results: 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. Conclusion: 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.

Keywords: adolescent; children; disability; education; neuromuscular disorders; rehabilitation; support.