Validation and adherence to the use of the home exercise booklet - Duchenne muscular dystrophy

Validação e adesão ao uso de cartilha de exercícios domiciliares - distrofia muscular de Duchenne

DOI: https://doi.org/10.17765/2176-9206.2024v17n3.e12091
Keywords: Teenagers, Children, Duchenne muscular dystrophy, Physical exercise

Abstract

The present study aimed to validate the content and analyze adherence to the exercises presented in the booklet for children and adolescents with Duchenne muscular dystrophy (DMD). Nine expert judges evaluated the booklet using a questionnaire adapted in the content validation process. Fifteen children/adolescents with DMD and their caregivers reported on the quality of the material's content and adherence to its use (15 and 45 days after delivery of the booklet). Twenty-two aspects addressed in content validation received scores above the acceptable index. The majority of caregivers responded “I agree” or “I completely agree” to all items analyzed regarding the evaluation of the material. In the short term, the adherence rate was 33.3% and in the long term, 13.3%. The booklet proved to be a beneficial tool to enrich the physiotherapeutic treatment of children and adolescents with DMD. However, moderate/low adherence was observed by participants.

Author Biographies

Amanda Silva Gomes dos Santos, University of São Paulo
Graduate student in Physiotherapy, Faculty of Medicine of Ribeirão Preto, University of São Paulo, Ribeirão Preto, SP, Brazil
Camila Scarpino Barboza Franco, University of São Paulo
Physiotherapist at the Child Development Play Clinic. Master's student in the Rehabilitation and Functional Performance Program at the Skeletal Muscle Structure and Function Laboratory at the Faculty of Medicine of Ribeirão Preto (FMRP). Specialization completed in Adult and Child Neurofunctional Physiotherapy at the Hospital das Clínicas of the Faculty of Medicine of Ribeirão Preto. Physiotherapist from the Faculty of Medicine of Ribeirão Preto, University of São Paulo (FMRP - USP). She was a scientific initiation student at the Skeletal Muscle Structure and Function Laboratory of the Department of Biomechanics, Medicine and Rehabilitation of the Locomotor System at the Faculty of Medicine of Ribeirão Preto (FMRP).
Ana Claudia Mattiello-Sverzut, University of São Paulo
Degree in Physiotherapy at UFSCar (1989). Master's degree in Functional and Molecular Biology at IB-UNICAMP (1994). PhD in Experimental and Comparative Pathology at FMRP-USP (1999). Joined as a professor at FMRP-USP in 2003. Post-Doctorate at the Institute of Sports Medicine Copenhagen, Bispebjerg Hospital, Copenhagen, Denmark (2008-2009). Coordinates the disciplines: Kinesiotherapy, Physiotherapy Applied to Pediatrics and Internship in Neuro Functional Physiotherapy for Children. She was General Coordinator of the Integrated Rehabilitation Center (CIR) of the State Hospital linked to HC-FMRP-USP (2019-2023). She is currently Coordinator of the Physiotherapy area at CIR-HE. She is Coordinator of the Research Committee at CER-HCFMRP-USP. She is a Member of the Editorial Board of the Brazilian Journal Physical Therapy. She has experience in the area of ​​Neurological Physiotherapy (Subareas: Child Neurology, especially neuromuscular diseases). She carries out scientific studies with humans, focusing on myopathies, Charcot Marie Tooth disease, spinal muscular atrophy and myelomeningocele, and with animals, analyzing the morphology and function of skeletal muscles.

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Published
2024-08-25
Issue
Vol 17 No 3 (2024): july./sept.
Section
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