Symptom frequency in children with congenital heart disease and parental care burden in predicting the quality of life of parents in Turkey

Abstract Purpose This study was conducted to investigate the symptom frequency and parental care burden of the children with congenital heart disease in predicting the quality of life of parents in Turkey. Design and method The study subjects for the present study included 124 parents whose children were suffering from heart disease. The data for the study were collected from these parents using parent information form, the questionnaire of the frequency of heart disease-related symptoms of the child, the caregiver burden scale, and the quality of life scale. The level by which the heart disease-related symptoms of the child and caregiver burden predicted the quality of life was analyzed using the regression analysis. Results The most common symptoms in children were found to be anorexia, difficulty in activities, palpitations, shortness of breath, weakness, and fatigue. The number of symptoms observed in children and the care burden of the parents were determined to explain 27.1% of the psychological health sub-dimension, 14.4% of the social relations sub-dimension, and 34.9% of the environment sub-dimension. When the variables were examined separately, the number of symptoms was found to significantly predict only social relations sub-dimensions. Conclusion Increased number of symptoms increased parental care burden. Increased number of symptoms and care burden of parents reduced the quality of life of parents. Practice implications Symptom management is one of the important responsibilities of nurses in improving care burden and quality of life for parents of children with heart disease.