A qualitative questionnaire-based study to explore the experiences of children and young people with Spinal Muscular Atrophy (SMA) and their families regarding school transition and educational participation.
The study objectives:
To identify barriers to successful educational transition. To advocate for patients and families during the transitional process. To explore experiences of inclusion, access and support within school settings. To understand the coordination between education, healthcare and support services.
To inform the development of practical, patient-centred guidance to improve educational transitions for children and young people with SMA.
Genetically confirmed diagnosis of Spinal Muscular Atrophy 1, 11 or 111
In education, in either primary school, secondary school or further education
Access to internet and either a smart phone, tablet or computer.
Not in education
Not able to comply with the consent process
Not cognitively able to complete the questionnaire.
Participants with a genetic diagnosis of Spinal Muscular Atrophy 1, 11 or 111.
Family-based
Prospective
Not listed
Completion of the questionnaire to explore the experiences of children and young people with SMA and their families regarding school transition and educational participation.
3 families will be invited to take place in a focus group discussion. Each family will be interviewed in a family unit on Microsoft Teams. These discussions will enable the development of a questionnaire which will be sent to 12 families to complete.
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