EVALUATION OF FAMILY IMPACT OF CHILDREN WITH CEREBRAL PALSY AND FAMILY CAREGIVER'S QUALITY OF LIFE, SLEEP QUALITY AND INDIVIDUAL PHYSICAL EDUCATION SATISFACTION: A MIXED STUDY

Abstract

Purpose: Cerebral Palsy (CP) is a disease that has significant effects on both the child and the family. The objective of this study is to examine the influence of the family, quality of life, sleep quality and individual physical education (IPE) of family caregivers of children with CP. In addition, it is planned to detail the factors affecting their satisfaction through semi-structured individual interviews. Methods: Family caregivers of 55 children diagnosed with CP between the ages of 1 and 15 were included in the study. Demographic information with “Demographic Information Survey”, the functional status of the child's with “Gross Motor Function Classification System (GMFCS)” the impact of the child on the family with “Impact on Family Scale (IoFS)”, caregiver's quality of life with “World Health Organization Quality of Life Scale - Short Form (WHOQOL-BREF) ”, caregiver's sleep quality was evaluated with “ Pittsburgh Sleep Quality Index (PSQI)” and the satisfaction with IPE was questioned with the “Pediatric Quality of Life Healthcare Parental Satisfaction Scale (PedsQL)”. Qualitative data were obtained through semi-structured individual interviews. Results: In our study, GMFCS level was negatively correlated with WHOQOL-BREF (p=0.028) and positively correlated with PSQI (p=0.002). In addition, the IoFS scale correlated negatively (p=0.000) with WHOQoL-BREF and positively (p=0.016) with PSQI. Conclusions: The findings of this study indicate that the physical dependence of the child has a negative impact on the quality of life and sleep quality of caregivers, and that the number of siblings affects parents' satisfaction with the treatment. It is recommended that further information be obtained regarding parents' perceptions of the disease and their individual physical education needs, as a result of semi-structured individual interviews.

Keywords

• cerebral palsy
• family
• personal satisfaction
• physical education
• quality of life

SEREBRAL PALSİLİ ÇOCUKLARIN AİLE ETKİLENİMİ VE AİLEDEKİ BAKIM VERENİN YAŞAM KALİTESİ, UYKU KALİTESİ VE BİREYSEL BEDEN EĞİTİM MEMNUNİYETİNİN DEĞERLENDİRİLMESİ: KARMA ÇALIŞMA

Öz

Amaç: Serebral Palsi (SP), hem çocuk hem de aile üzerinde önemli etkileri olan bir hastalıktır. Bu çalışmanın amacı, SP’li çocukların aile etkilenimini ve ailedeki bakım verenin yaşam kalitesini, uyku kalitesini ve bireysel beden eğitiminden (IPE) memnuniyetini incelemektir. Ayrıca yarı yapılandırılmış bireysel görüşmelerle de memnuniyetini etkileyen faktörlerin detaylandırılması planlanmıştır. Yöntem: Çalışmaya 1-15 yaş aralığında CP tanısı almış 55 çocuğun ebeveyni dahil edilmiştir. Demografik bilgiler “Demografik Bilgiler Anketi” ile, çocuğun fonsiyonel durumu “Kaba Motor Fonksiyon Sınıflandırma Sistemi (KMFSS)” ile, çocuğun aile üzerindeki etkisi “Aile Etki Ölçeği (AEÖ)” ile, bakım verenin yaşam kalitesi “Dünya Sağlık Örgütü Yaşam Kalite Ölçeği – Kısa Form (DSÖYKÖ-KF)” ile, bakım verenin uyku kalitesi “Pittsburgh Uyku Kalitesi İndeksi (PUKİ)” ile ve bakım verenin çocuğunun aldığı bireysel bedensel eğitimden memnuniyeti “Pediatrik Yaşam Kalitesi Sağlık Bakımı Ebeveyn Memnuniyet Ölçeği (PYKSBEMÖ)” ile değerlendirilmiştir. Nitel veriler ise, yarı yapılandırılmış bireysel görüşmeler ile sağlanmıştır. Sonuçlar: Çalışmamızda KMFSS seviyesinin DSÖYKÖ-KF ile negatif (p=0,028), PUKİ ile pozitif (p=0,002) korelasyon gösterdiği bulunmuştur. Ayrıca AEÖ ölçeği DSÖYKÖ-KF ile negatif (p=0,000), PUKİ ile pozitif (p=0,016) korelasyon göstermektedir. Tartışma: Bu çalışmanın bulguları, çocuğun fiziksel bağımlılığının ebeveynlerin yaşam kalitesi ve uyku kalitesi üzerinde olumsuz bir etkiye sahip olduğunu ve kardeş sayısının ebeveynlerin tedaviden memnuniyetini etkilediğini göstermektedir. Yarı yapılandırılmış bireysel görüşmeler sonucunda ebeveynlerin hastalık algıları ve bireysel beden eğitimi ihtiyaçları hakkında daha fazla bilgi edinilmesi önerilmektedir.

Anahtar Kelimeler

• Serebral palsi
• Aile
• Kişisel memnuniyet
• Bedensel eğitim
• Yaşam kalitesi

Kaynakça

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