The Relationship Between Care Burden, Psychological Status, and Quality of Life in Parents Who Have a Child Diagnosed with Cerebral Palsy

Year 2022, , 290 - 296, 25.12.2022

Esra Gündede , Emre Şenocak , Aysel Yıldız Özer

https://doi.org/10.46332/aemj.1036724

Cited By: 1

Abstract

Purpose: It is known that the care burden of parents who care child diagnosed with cerebral palsy (CP) is higher than that of the parents who care for a healthy child. The study aim was to examine the relationship between this caregiving burden (CB) and parents' psychological state (PS) and quality of life (QoL).

Materials and Methods: The study is a prospective cross-sectional study completed with 101 parents of children with CP. The CB, PS, and QoL of parents were measured with Zarit Caregiver Burden Scale, Beck Depression Inventory, and Short Form-36, respectively. In addition, the QoL of CP was assessed with the Katz Activities of Daily Living Scale and functionality was meas-ured with the Pediatric Functional Independence Measure.

Results: The majority of caregivers were mothers (90.09%). The daily living activities and functionality of the children were moderate levels. While the CB of the parents was moderate to severe, their PS was mildly depressed. There was a positive moderate (r=0.472, p<0.001) correlation between CB and PS, and a negative moderate correlation with physical function subdimension of QoL (r= -0.475, p<0.001). According to the multiple regression model, the daily living activity levels of the children and the PS of the parents explain 27.4% of the CB.

Conclusion: CB of the parents who care for the child with CP affects their psychological health and their QoL. It would be more beneficial if care plans and services are inclusive not only for children with CP but also for parents who care for them.

Keywords

care burden, Cerebral palsy, depression

Serebral Palsili Çocuğu Olan Ebeveynlerde Bakım Yükü, Psikolojik Durum ve Yaşam Kalitesi İlişkisi

Abstract

Amaç: Serebral Palsili (SP) bir çocuğa bakım veren ebeveynlerin bakım yüklerinin sağlıklı bir çocuğa bakım veren ebeveynlerden fazla olduğu bilinmektedir. Bu çalışma ile birincil bakım veren ebeveynlerin bakım yükü (BY) ile psikolojik durumları (PD) ve yaşam kaliteleri (YK) arasındaki ilişkinin incelenmesi hedeflenmiştir.

Araçlar ve Yöntem: Çalışma, SP'li çocuğa sahip 101 ebeveyn ile prospektif olarak gerçekleştirilen bir kesitsel çalışmadır. Bu çalışmada ebeveynlerin BY, PD ve YK sırasıyla Zarit Bakım Verme Yükü Ölçeği, Beck Depresyon Envanteri ve Kısa Form-36 ile ölçüldü. Ayrıca SP'li çocukların YK’sı Katz Günlük Yaşam Aktiviteleri Ölçeği ile fonksiyonellikleri ise Pediatrik Fonksiyonel Bağımsızlık Ölçümü ile değerlendirildi.

Bulgular: Analiz sonuçlarına göre bakım verenlerin büyük çoğunluğu annelerden oluşmaktaydı (%90.09). Değerlendirmeler sonrasında çocukların günlük yaşam aktiviteleri (GYA) ve fonksiyonellik seviyeleri orta düzeyde bulundu. Bununla paralel olarak ebeveynlerin bakım yükleri orta-ciddi düzeyde iken psikolojik durumları hafif depresif olduğu görüldü. Ebeveynlerin BY ile PD arasında orta düzey (r=0.472, p<0.001), YK alt boyutu olan fiziksel fonksiyon ile negatif yönlü orta düzey (r=-0.475, p<0.001) bir korelasyon vardı. Çoklu regresyon modeline bakıldığında ise çocukların GYA seviyeleri ve ebeveynlerin PD durumları bakım yükünün %27.4'ünü açıklamaktadır.

Sonuç: SP'li çocuğa bakım veren ebeveynlerin bakım yüküne bağlı olarak psikolojik sağlıkları olumsuz yönde etkilenmekte ve yaşam kaliteleri düşmektedir. Bu sebeple bakım planlamaları ve hizmetleri sadece SP'li çocuklara yönelik değil bakım veren ebeveynleri de kapsayıcı şekilde olması faydalı olacaktır.

Keywords

bakım yükü, depresyon, Serebral Palsi

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