Occupational performance of children with neuromuscular diseases: perspectives of patients and their parents


ATASAVUN UYSAL S., GÜRBÜZ İ., ŞAHİN S., EKİCİ G., YILMAZ Ö. T., KARADUMAN A. A.

Journal of Exercise Therapy and Rehabilitation, vol.8, no.1, pp.63-72, 2021 (Peer-Reviewed Journal) identifier

Abstract

Purpose: Neuromuscular disorders consists of a group of various hereditary and acquired diseases. Activity and participation are important issues in children with neuromuscular disorders for social inclusion in community. The study aimed to analyse and compare the occupational performance of children with neuromuscular disorders from the perspectives of children and their parents.Methods: Fifty-seven children with neuromuscular disorders and their parents were included in the study. Brooke Upper and Lower Extremity Functional Classifications were used to determine the functional levels of children. The occupational performance was analyzed by Canadian Occupational Performance Measurement. Disability was investigated by using Pediatric Evaluation of Disability Inventory and functional independence by Wee Functional Independence Measurement. Results: Fifteen (26.32%) girls and 42 (73.68%) boys with neuromuscular disorders and their parents were included in the study. The mean ages of the children were 9.66±3.16 years. Functional mobility activities were determined to be the most important occupational area by both the children and parents. The second most important area was their social roles for children and independence-oriented activities for parents. Occupational performance score of the children was 6.69±2.98 from the point of children, while 5.69±2.84 according to their parents (p<0.05). Occupational satisfaction of children with neuromuscular disorders was scored 6.29±3.18 by children, while 4.82±3.21 by their parents (p<0.05). Conclusion: Except for the concurrence in most important occupational area, no consensus was formed between children and parents in terms of children’s occupational performance and satisfaction scores. It was observed that the activity performance and satisfaction expectations of both children and families are different.