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

Authors : Fatma Aslan, Hülya Karataş

Pages : 24-36

Doi:10.52881/gsbdergi.1387492

View : 23 | Download : 33

Publication Date : 2024-08-30

Article Type : Research Paper

Abstract :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.
Keywords : Kalıtsal metabolik bozukluk, ebeveyn, yaşam kalitesi, bakım yükü