QUALITY OF LIFE, CAREGIVER BURDEN AND ASSOCIATED FACTORS WITH REGARD TO PARENTS OF CHILDREN WITH INHERITED METABOLIC DISORDERS

Öz

Background: Parents of children with inherited metabolic diseases have many difficulties compared to parents of healthy children. Aim: The aim of this study is to determine quality of life, caregiver burden and associated factors with regard to parents of children with inherited metabolic disorders. Method: The par-ents of 121 children diagnosed with inherited metabolic disorders who were admitted to the pediatric meta-bolic clinics of the university hospital constituted the sample of the study. The sample of the study was determined by Power Analysis. Data were collected using Quality-of-Life Scale and Caregiver Burden Inventory. Data were statistically analyzed using IBM SPSS V23. Kolmogorov-Smirnov and Shapiro-Wilk tests were used to evaluate the suitability of the data for normal distribution. One-way MANOVA was used to compare the scores obtained from the scale in terms of demographic characteristics and significance levels for the differences between any pair of means were evaluated using the Duncan's Multiple Range Test. The significance level of mean ± sd for the quantitative data obtained in the analysis was considered as p<0,05. Results: The mean score of parents in the Caregiver Burden Inventory was found to be 37,6±13,1. Sub-dimension scores of the Quality-of-Life Scale, in this study, were found as follows: mean value of overall health status was 43,6±18, physical health status was 42,7±12,7, psychological health status was 51,3±15, social relations was 47,5±19,9 and environment was 46,9±16,4. Conclusion: It was concluded that quality of life of caring parents is affected in many dimensions, particularly physical health status, and the caregiver burden is mild/moderate.

Anahtar Kelimeler

• Inherited metabolic disorders
• parent
• quality of life
• caregiver burden.

KALITSAL METABOLİK HASTALIĞI OLAN ÇOCUĞA SAHİP EBEVEYNLERİN YAŞAM KALİTESİ, BAKIM YÜKÜ VE ETKİLEYEN FAKTÖRLERİN BELİRLENMESİ

Öz

Giriş: Kalıtsal metabolik hastalık tanısı olan çocukların ebeveynleri sağlıklı çocukların ebeveynlerine kıyasla birçok yönden güçlükler yaşamaktadır. Amaç: Bu çalışmanın amacı kalıtsal metabolik hastalık tanısı almış çocukların ebeveynlerinin yaşam kalitesini, bakım yükünü ve etkileyen faktörleri belirlemektir. Yöntem: Araştırmanın örneklemini bir hastanenin çocuk metabolizma kliniğine başvuran, kalıtsal metabolik hastalık tanısı olan 121 çocuğun ebeveyni oluşturmuştur. Örneklem sayısı güç analizi ile belirlenmiştir. Veriler Tanımlayıcı Özellikler Soru Formu, Yaşam Kalitesi Ölçeği ve Bakım Verme Yükü Ölçeği kullanılarak elde edilmiş, IBM SPSS V23 ile analiz edilmiştir. Normal dağılıma uygunluk Kolmogorov-Smirnov ve Shapiro-Wilk testleriyle yapılmıştır. Demografik özelliklere göre ölçek puanlarının karşılaştırılmasında Tek yönlü MANOVA kullanılmış ve çoklu karşılaştırmalar Duncan testiyle gerçekleştirilmiştir. Analiz sonuçları nicel veriler için ortalama ± s. sapma, önem düzeyi p<0,05 olarak alınmıştır. Bulgular: Ebeveynlerin bakım yükü puan ortalaması 37.6±13.1 bulunmuştur. Yaşam kalitesi ölçeği alt boyut puanları; genel sağlık durumu ortalama değeri 43,6 ± 18, fiziksel sağlık ortalama değeri 42,7 ± 12,7, psikolojik ortalama değeri 51,3 ± 15, sosyal ilişkiler ortalama değeri 47,5 ± 19,9, çevre ortalama değeri 46,9 ± 16,4 olarak bulunmuştur. Sonuç: Bakım veren ebeveynlerin yaşam kalitesinin, fiziksel sağlık başta olmak üzere birçok alanda etkilendiği ve bakım yükünün ise hafif/orta derecede olduğu tespit edilmiştir.

Anahtar Kelimeler

• Kalıtsal metabolik bozukluk
• ebeveyn
• yaşam kalitesi
• bakım yükü

Kaynakça

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