Relationship Between Child, Caregiver Characteristics and Caregiver Fatigue and Quality of Life Parameters in Children with Cerebral Palsy

Abstract

Aim: The aim of the study is to examine caregiver fatigue and quality of life in children with cerebral palsy (CP) with and without ambulation according to the sociodemographic characteristics of the child and caregiver. Material and Methods: 60 children with CP and their caregivers included in the study. After sociodemographic information of children with CP and caregivers were recorded, gross motor function levels of individuals were classified according to Gross Motor Classification System (GMFCS). GMFCS levels I and II were grouped as ambulatory, and levels III, IV and V as non-ambulatory. Functional independence levels of children were assessed with Functional Independence Measure for Children (weeFIM), fatigue level of caregivers was assessed with Fatigue Severity Scale (FSS), and quality of life parameters including pain, physical activity, energy level, sleep, social isolation, and emotional reactions were assessed with Nottingham Health Profile (NHP). Results: In the ambulatory group, there was a statistically significant positive correlation between the fatigue level of the caregiver and the duration of the child's participation in the physiotherapy (r=0.333, p=0.038,) and age (r=0.406, p=0.010). In the non-ambulatory group, there was a statistically significant positive correlation between the caregiver's age (r=0.500, p=0.021), body mass index (r=0.748, p<0.001), child’s age (r=0.500, p=0.021), duration of the child's participation in the physiotherapy (r=0.459, p=0.036) and fatigue level of the caregiver. In the non-ambulatory group, there was a statistically significant positive correlation between the duration of the child's participation in physiotherapy and the caregiver's NHP scores (r=0.437, p=0.047). Conclusion: In caregivers of ambulatory and non-ambulatory children with CP, duration of the child's participation in physiotherapy is associated with the caregiver's fatigue level. In non-ambulant children, it was concluded that the child's age, body mass index, and duration of the child's participation in the physiotherapy were associated with the caregiver's pain, social isolation and quality of life.

Keywords

• cerebral palsy
• caregiver
• fatigue
• quality of life

Serebral Palsili Çocuklarda Çocuk ve Bakım Veren Özellikleri ile Bakım Verenin Yorgunluk ve Yaşam Kalitesi Parametreleri Arasındaki İlişki

Abstract

Amaç: Çalışmanın amacı ambule olan ve olmayan Serebral Palsili (SP) çocuklarda, çocuk ve bakım verenin sosyodemografik özelliklerine göre bakım verenin yorgunluk ve yaşam kalitesini incelemektir. Gereç ve Yöntemler: Çalışmaya SP tanısı almış 60 çocuk ve bakım veren dahil edildi. SP’li çocukların ve bakım verenlerin sosyodemografik bilgileri kaydedildikten sonra çocukların kaba motor fonksiyon düzeyleri Kaba Motor Fonksiyon Sınıflama Sistemi’ne (KMFSS) göre sınıflandırıldı. KMFSS seviye 1, 2 ve 3 olanlar ambule, seviye 4 ve 5 olanlar ambule olmayan olarak gruplandırıldı. Çocukların fonksiyonel bağımsızlık düzeyleri Çocuklar için Fonksiyonel Bağımsızlık Ölçütü (ÇİFBÖ) ile, bakım verenin yorgunluk düzeyi, Yorgunluk Şiddeti Ölçeği (YŞÖ) ile; ağrı, fiziksel aktivite, enerji düzeyi, uyku, sosyal izolasyon, emosyonel reaksiyonlar gibi yaşam kalitesi parametreleri Nottingham Sağlık Profili (NSP) ile değerlendirildi. Bulgular: Ambule grupta bakım verenin yorgunluk düzeyi ile çocuğun fizyoterapi alma yılı (r=0,333, p=0,038,) ve yaşı (r=0,406, p= 0,010) arasında pozitif yönde istatistiksel olarak anlamlı korelasyon vardı. Ambule olmayan grupta bakım verenin yaşı (r=0,500, p=0,021), vücut kitle indeksi (r=0,748, p<0,001), çocuğun yaşı (r=0,500, p=0,021), çocuğun fizyoterapi alma yılı (r=0,459, p=0,036) ile bakım verenin yorgunluk düzeyi arasında pozitif yönde istatistiksel olarak anlamlı korelasyon vardı. Ambule olmayan grupta çocuğun fizyoterapi alma yılı ile bakım verenin NSP puanları arasında pozitif yönde istatistiksel olarak anlamlı korelasyon vardı (r=0,437, p=0,047). Sonuç: Ambule olan ve olmayan SP’li çocuğa bakım verenlerde, çocuğun fizyoterapi alma yılı ile bakım verenin yorgunluk düzeyi ilişkilidir. Ambule olmayan çocuklarda çocuğun yaşının, vücut kitle indeksinin, fizyoterapi alma yılının bakım verenin ağrısı, sosyal izolasyonu ve yaşam kalitesi ile ilişkili olduğu sonucuna ulaşıldı.

Keywords

• serabral palsi
• bakım veren
• yorgunluk
• yaşam kalitesi

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