Occupational Performance of Pediatric Patients with Neuromuscular Diseases: Perspectives of Patients and Their Parents

Öz

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.

Anahtar Kelimeler

• neuromuscular diseases
• Activities of daily life
• Parent
• Occupation
• Performance

Nöromüsküler Hastalıkları Olan Pediatrik Hastaların Aktivite Performansı: Hasta ve Ebeveynlerinin Bakış Açıları

Öz

Amaç: Nöromusküler hastalıklar çeşitli kalıtsal ve edinsel hastalıklardan oluşan bir grup bozukluktan oluşur. Aktivite ve katılım, nöromusküler hastalığa sahip olan çocuklarda toplumsal katılım için oldukça önemlidir. Bu çalışma, nöromusküler hastalığı olan çocukların aktivite performanslarını çocuk ve ebeveyn gözünden analiz edip karşılaştırmayı amaçlamıştır.
Yöntem: Çalışmaya 57 nöromusküler hastalığa sahip olan çocuk ve ebeveynleri dahil edildi. Çocukların fonksiyonel seviyelerini belirlemek için Brooke Üst ve Alt Ekstremite Fonksiyonel Sınıflandırmaları kullanıldı. Aktivite performansı Kanada Aktivite Performans Ölçümü ile analiz edildi. Özür seviyesini belirlemek için Pediatrik Özürlülük Değerlendirme Envanteri ve fonksiyonel bağımsızlık için Çocuklar için Fonksiyonel Bağımsızlık Ölçeği kullanıldı.
Bulgular: Çalışmaya nöromusküler hastalığı olan 15 (%26,32) kız, 42 (%73,68) erkek çocuk ve anne babası dahil edildi. Çocukların yaş ortalaması 9,66±3,16 yıl idi. Fonksiyonel mobilite aktiviteleri hem çocuklar hem de ebeveynleri tarafından bildirilen en önemli aktivite alanıdır. İkinci önemli aktivite alanı ise çocuklar tarafından sosyal roller, ebeveynleri tarafından bağımsızlıkla ilişkili aktiviteler olarak belirlendi. Çocukların aktivite performans puanları kendilerine göre 6,69±2,98 olarak belirlenirken ebeveynlerine göre 5,69±2,84 puan idi (p<0,05). Aktivite memnuniyet skoru ise çocuklarda 6,29±3,18 iken ebeveynleri için 4,82±3,21 idi (p<0,05).
Sonuç: En önemli aktivite alanı konusundaki fikir birliği dışında, çocuklar ve ebeveynleri arasında çocukların aktivite performansı ve memnuniyet skorları konularında herhangi bir fikir birliğine varılamadı. Gerek çocukların gerekse de ailelerin aktivite performans ve memnuniyet beklentilerinin farklı olduğu tespit edildi.

Anahtar Kelimeler

• Nöromüsküler hastalıklar
• günlük yaşam aktiviteleri
• ebeveyn
• aktivite
• performans
• çocuklar

Kaynakça

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