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J Korean Soc Matern Child Health > Volume 17(1); 2013 > Article
Journal of The Korean Society of Maternal and Child Health 2013;17(1):15-26.
DOI: https://doi.org/10.21896/jksmch.2013.17.1.15    Published online January 31, 2013.
Caregivers Proxy-Reported Health-Related Quality of Life for Children with Rare Diseases: Is It Related to Their Caregivers' Health-Related Quality of Life?
김진희1, 박기수2, 김경주3, 조민현4, 서지영5
1한국보건의료연구원
2경상대학교
3근거창출임상연구국가사업단
4경북대학교
5부산가톨릭대학교
희귀난치성 환아의 건강관련 삶의 질과 간호제공자의 건강관련 삶의 질과의 관련성
김진희1, 박기수2, 김경주3, 조민현4, 서지영5
1한국보건의료연구원
2경상대학교
3근거창출임상연구국가사업단
4경북대학교
5부산가톨릭대학교
Abstract
Objectives
To create basic data for developing nursing intervention protocols to increase the quality of life (QOL) of children with rare diseases and caregivers by comparing the health-related QOL of both.
Methods
A questionnaire was used to assess the QOL of patients and caregivers. The data were analyzed using the t-test, ANOVA, and multiple regression analysis.
Results
Children with rare diseases and caregivers were rated as having less psychosocial (mental)health related QOL than physical health related QOL. The physical component summary (PCS) of the caregivers was not related to QOL of the children with rare diseases. The mental component summary (MCS) of the caregivers was positively affected with the emotional function (nursing care diseases: β=0.072, p=.001; medical care diseases: β=0.197, p<.001) of the children.
Conclusions
Relative to their rare diseases, caregivers generally reported that their child was more impaired, which suggests the need for multiple social supports. These points should be kept in mind when assessing and treating children with rare diseases and their families as psychological interventions that target areas of concern (e.g., coping with having a rare disease) may be helpful for improving child and caregivers QOL.
Key Words: rare diseases, quality of life, child, caregivers
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