ERIC Number: ED661351
Record Type: Non-Journal
Publication Date: 2024
Pages: 111
Abstractor: As Provided
ISBN: 979-8-3840-9036-6
ISSN: N/A
EISSN: N/A
The Educational Experiences of Children and Adolescents with a RYR1-Related Disease
Jeremy G. Armann
ProQuest LLC, Ph.D. Dissertation, Duquesne University
This paper investigates the educational experiences of children and adolescents diagnosed with RYR1-related diseases, a spectrum of congenital myopathies affecting muscle function. Despite these conditions typically sparing cognitive abilities, they profoundly impact physical capabilities, presenting challenges in school environments such as participation in physical activities and social interactions. The study utilizes data collected through the RYR1-Related Disease Educational Impact and Satisfaction Survey (RDEISS) and the Behavioral and Emotional Screening System (BESS) from 49 parents of 51 children aged 3-18 years. Findings reveal prevalent classroom difficulties including handwriting issues and written expression difficulties, with 78% of children receiving special education services, primarily through Individualized Education Programs (IEPs) and Section 504 Plans. Parental satisfaction with school services is generally high (80%), despite challenges in communication and implementation. Most children exhibit normal behavioral and emotional profiles, yet some experience heightened internalizing behaviors. These insights underscore the necessity for tailored educational support and interdisciplinary collaboration to optimize educational outcomes for children with RYR1-related diseases. [The dissertation citations contained here are published with the permission of ProQuest LLC. Further reproduction is prohibited without permission. Copies of dissertations may be obtained by Telephone (800) 1-800-521-0600. Web page: http://bibliotheek.ehb.be:2222/en-US/products/dissertations/individuals.shtml.]
Descriptors: Children, Adolescents, Diseases, Educational Experience, Congenital Impairments, Human Body, Cognitive Ability, Educational Environment, Physical Disabilities, Students with Disabilities, Interpersonal Relationship, Physical Activities, Parents, Academic Accommodations (Disabilities), Individualized Education Programs, Federal Legislation
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Publication Type: Dissertations/Theses - Doctoral Dissertations
Education Level: N/A
Audience: N/A
Language: English
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Identifiers - Laws, Policies, & Programs: Rehabilitation Act 1973 (Section 504)
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