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

Fatma Aslan; Hülya Karataş

Makale detayları

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

Yazarlar:

Fatma Aslan | Hülya Karataş

Yayıncı:

Gazi University

Ana Başlıklar:

Çocuk Sağlığı ve Hastalıkları Hemşireliği

Dergi:

Gazi Sağlık Bilimleri Dergisi Vol.9 Issue 2, pp.24-36

Belge Tipi:

Makale

Yayın Tarihi:

8/2024

Belge Dili:

İngilizce

Document ID (Org No.):

2001326061

pISSN:

2548-0383

Anahtar kelimeler:

Özet:

 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 Duncans Multiple Range Test. The significance level of mean  sd for the quantitative data obtained in the analysis was considered as p0,05. Results: The mean score of parents in the Caregiver Burden Inventory was found to be 37,613,1. Sub-dimension scores of the Quality-of-Life Scale, in this study, were found as follows: mean value of overall health status was 43,618, physical health status was 42,712,7, psychological health status was 51,315, social relations was 47,519,9 and environment was 46,916,4. 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 mildmoderate.

 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 Duncans Multiple Range Test. The significance level of mean  sd for the quantitative data obtained in the analysis was considered as p0,05. Results: The mean score of parents in the Caregiver Burden Inventory was found to be 37,613,1. Sub-dimension scores of the Quality-of-Life Scale, in this study, were found as follows: mean value of overall health status was 43,618, physical health status was 42,712,7, psychological health status was 51,315, social relations was 47,519,9 and environment was 46,916,4. 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 mildmoderate.

 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 Duncans Multiple Range Test. The significance level of mean  sd for the quantitative data obtained in the analysis was considered as p0,05. Results: The mean score of parents in the Caregiver Burden Inventory was found to be 37,613,1. Sub-dimension scores of the Quality-of-Life Scale, in this study, were found as follows: mean value of overall health status was 43,618, physical health status was 42,712,7, psychological health status was 51,315, social relations was 47,519,9 and environment was 46,916,4. 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 mildmoderate.

 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 p0,05 olarak alınmıştır. Bulgular: Ebeveynlerin bakım yükü puan ortalaması 37.613.1 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 hafiforta derecede olduğu tespit edilmiştir.

Makale detayları

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

Yazarlar:

Fatma Aslan | Hülya Karataş

Yayıncı:

Gazi University

Ana Başlıklar:

Çocuk Sağlığı ve Hastalıkları Hemşireliği

Dergi:

Gazi Sağlık Bilimleri Dergisi Vol.9 Issue 2, pp.24-36

Belge Tipi:

Makale

Yayın Tarihi:

8/2024

Belge Dili:

İngilizce

Document ID (Org No.):

2001326061

pISSN:

2548-0383

Inherited metabolic disorders

parent

quality of life

caregiver burden.Kalıtsal metabolik bozukluk

ebeveyn

yaşam kalitesi

bakım yükü

Sayı

Makale detayları

Yazarlar: Fatma Aslan | Hülya Karataş

Yayıncı: Gazi University

Ana Başlıklar: Çocuk Sağlığı ve Hastalıkları Hemşireliği

Dergi: Gazi Sağlık Bilimleri Dergisi Vol.9 Issue 2, pp.24-36

Belge Tipi: Makale

Yayın Tarihi: 8/2024

Belge Dili: İngilizce

Document ID (Org No.): 2001326061

pISSN: 2548-0383

Sayı

Yazarlar:

Fatma Aslan | Hülya Karataş

Yayıncı:

Gazi University

Ana Başlıklar:

Çocuk Sağlığı ve Hastalıkları Hemşireliği

Dergi:

Gazi Sağlık Bilimleri Dergisi Vol.9 Issue 2, pp.24-36

Belge Tipi:

Makale

Yayın Tarihi:

8/2024

Belge Dili:

İngilizce

Document ID (Org No.):

2001326061

pISSN:

2548-0383