Burden and Quality of Life in Caregivers of Patients with Rare and Incurable Disease

재가 희귀.난치성질환 돌봄 제공자의 부담감과 삶의 질

Purpose: The purpose of the study was to investigate burden and the qualify of life in caregivers who are taking care of home-based rare and incurable disease patients. Methods: The subjects of this study were 300 caregivers of rare and incurable disease patients registered at five health centers in Seoul. A survey was conducted by mail and visit in person during the period from the 25th of March to the 12th of May 2005. Collected data were analyzed through t-test, ANOVA, Pearson's correlation coefficient. Result: The mean burden of caregivers was 3.42, and the mean qualify of life of caregivers was 2.71. Burden and QoL showed significant differences according to caregivers' characteristics such as sender, age, relation to the patient, academic qualification, religion, occupation, monthly household income and perceived health condition. Caregivers' burden was in an inverse correlation with their quality of life. Conclusions: According to the results of this study, rare and incurable disease caregivers' burden and their quality of life were in a significant correlation with each other. In order to improve caregivers' quality of life by reducing their burden, we need to reestablish comprehensive policies for rare and incurable disease management including nursing intervention strategies for caregivers.