Participation into daily life of children with cerebral palsy with multidimensional perspectives: a study protocol

Yıl 2019, Cilt: 6 Sayı: 1, 62 - 70, 12.04.2019

Mintaze Kerem Günel , Hilal Özcebe , Umut Ece Arslan Ayşe Numanoğlu Akbaş , Cemil Özal Özge Çankaya , Kübra Seyhan , Merve Tunçdemir Sefa Üneş

Öz

Purpose: This research study aimed to examine the relationship between participation and quality of life with impairment and environment (physical, social and attitudinal) aspects in children aged 2-18 years with cerebral palsy (CP) according to framework of International Classification of Functioning, Disability and Health.

Methods: A population-based study of children with CP sampled from 9 different districts of metropolitan area in Ankara will participate. Children were visited in special education and rehabilitation centers and inclusive schools in Ankara and totally 450 children with CP and their parents will be included. The project has two stages: translation, adaptation, validity and reliability study of Life Habits Questionnaire (LIFE-H) and determination of quality of life and participation levels and familial status. In the second stage, beside the LIFE-H, Child Health Questionnaire Parent Form-50 (CHQ-PF 50), Pediatric Disability Inventory (PEDI), Pediatric Outcomes Data Collection Instrument (PODCI), Pediatric Quality of Life Inventory (PedsQL), Impact on Family Scale (IPFAM) and Measurement Process of Care- 56 (MPOC-56) will be used.

Conclusion: This project is original in its methods by directly engaging children with CP and their families, while studying in quantitative terms the crucial outcomes of participation and quality of life.

Anahtar Kelimeler

Cerebral Palsy, participation, quality of life, parents

Çok boyutlu bakış açısıyla serebral palsili çocukların günlük yaşama katılımları: çalışma protokolü

Öz

Amaç: Projenin amacı, 2-18 yaş arası serebral palsili (SP) çocuklarda, işlevsellik, yeti yitimi ve sağlığın uluslararası sınıflandırmasına uygun olarak, katılımın ve yaşam kalitesinin bozukluk ve çevre ile (fiziksel, sosyal ve tutumsal) olan ilişkilerinin incelenmesidir.

Yöntem: Popülasyon temelli bir çalışma olarak, Ankara kent merkezindeki 9 ilçeden SP’li çocuklar katılacaktır. Ankara’da yaşayan ve özel eğitim ve rehabilitasyon merkezleri ile kaynaştırma okullarına devam eden 450 çocuk ile ebeveynleri çalışmaya dahil edilecektir. Çalışmanın, Life Habits (LIFE-H) anketinin Türkçeye çevrilmesi, uyarlanması, geçerlik ve güvenilirlik çalışmalarının yapılması ile yaşam kalitesi, katılım düzeylerinin belirlenmesi ve ailesel durumun değerlendirilmesi olmak üzere iki aşaması vardır. İkinci aşamada LIFE-H anketinin yanı sıra, Çocuk Sağlığı Anketi Ebeveyn Formu-50 (CHQ-PF-50), Pediatrik Engellilik Envanteri (PEDI), Pediatrik Veri Toplama Aracı (PODCI), Pediatrik Yaşam Kalitesi Envanteri (PedsQL), Aile Etki Ölçeği (IPFAM) ve Bakım Süreçleri Ölçeği- 56 (MPOC-56) kullanılacaktır.

Sonuç: Bu proje, doğrudan SP’li çocukları ve onların ailelerini dahil ederek, katılım ve yaşam kalitesi gibi nicel terimler ile ilgili sonuçları temel alan yöntemi açısından orijinaldir.

Anahtar Kelimeler

Serebral Palsi, katılım, yaşam kalitesi, ebeveynler

Kaynakça

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