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김진희 ( Kim Jin-Hee ) - 한국보건의료연구원
박기수 ( Park Ki-Soo ) - 경상대학교 의과대학 예방의학교실 및 건강과학연구원
김경주 ( Kim Kyung-Joo ) - 근거창출임상연구국가사업단
조민현 ( Cho Min-Hyun ) - 경북대학교 의학전문대학원 소아과학교실
서지영 ( Seo Ji-Yeong ) - 부산가톨릭대학교 간호학과
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Abstract
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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.
Conclusion: 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.
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KeyWords
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rare diseases, quality of life, child, caregivers
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원문 및 링크아웃 정보
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등재저널 정보
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