간질아동 부모의 삶의 질에 대한 지각된 낙인의 매개효과 = Mediating effect of perceived stigma against epilepsy on quality of life among parents with epileptic child

다국어 초록 (Multilingual Abstract)

Purpose:Epilepsy of child may cause high level of psychosocial difficulties for parents including stigmatization and stress and therefore worsen their quality of life (QOL). The purpose of this study was to evaluate the mediating effect of perceived stigma against epilepsy on QOL among parents with epileptic child.
Methods:Two hundred and sixty parents of epileptic child recruited from five separated university hospital child neurology clinics specializing in epilepsy completed a demographic questionnaire, a medical questionnaire, a perceived stigma questionnaire and the Ro's Quality of Life Inventory, a popular tool for evaluating QOL of adults in Korea which is composed of 6 domains and 47 questions. Data was analyzed with SPSS 14.0 program using frequency analysis and descriptive analysis and with AMOS 7.0 program using Structural Equation Model (SEM) analysis.
Results:The level of parents' QOL was relatively fair. SEM analysis on the quality of life level of parents showed that all variables (especially having religion, the monthly income, employment state, age of child, the leisure time, the perceived stigma level against epilepsy, and seizure frequency) directly affect the quality of life level of parents and that disease- related variables also affect the quality of life level of parents indirectly through the mediating factor (the perceived stigma), where the indirect effect is large with the existence of combined disabilities. The total effect on the quality of life level of parents is large with the existence of combined disabilities, the perceived stigma level, the leisure time, having religion, and the monthly income.
Conclusion:The results of this study indicated that many factors including parents' perceived stigma may affect the quality of life of parents with epileptic children directly, and that some disease-related factors may affect indirectly through a mediating factor, the perceived stigma. Multidisciplinary collaboration would be imperative for their welfare.

국문 초록 (Abstract)

목 적:간질아동의 치료과정에서 이들을 돌보는 부모들은 스트레스, 사회적 낙인 등으로 인한 정신사회적 곤란으로 삶의 질이 저하될 수 있다. 따라서 본 연구는 간질아동 부모들의 간질에 대한 지각된 낙인과 삶의 질을 평가하고 지각된 낙인이 간질아동의 질병관련 변수들과 삶의 질 사이에서 매개변수로 작용하는지 조사하고자 하였다.
방 법:경기, 부산, 대구, 경북 소재 5개 대학병원의 소아간질클리닉에서 간질로 진단받고 치료중인 간질아동의 부모 260명을 대상으로 지각된 낙인과 삶의 질 측정도구 등 구조화된 설문조사를 실시한 후 통계학적으로 분석하였다.
결 과:부모들의 삶의 질 수준은 비교적 양호하게 나타났으며 지각된 낙인이 간질아동의 질병관련 변수들과 삶의 질 사이에서 매개변수로 작용함을 확인하였다. 지각된 낙인, 고용 여부, 월수입, 종교 유무, 여가시간은 간질아동 부모의 삶의 질에 직접적으로 영향을 미치는 것으로 나타났고, 간질아동의 질병관련 변수들인 동반장애 유무 및 경련의 빈도는 매개변수인 지각된 낙인을 통해 간접효과를 미치는 것으로 나타났다. 총인과 효과는 동반장애 유무, 지각된 낙인, 고용여부, 월수입 순으로 크게 나타나 지각된 낙인의 매개효과가 매우 중요함을 알 수 있었다.
결 론:간질아동 부모들의 삶의 질이 다양한 사회경제적 요인 및 아동의 의학적 요인에 의해 영향 받으며 간질에 대한 지각된 낙인의 역할이 중요함을 알 수 있었고, 그들의 삶의 질 향상을 위해서는 다학문간의 공동 노력이 필요할 것으로 보인다.

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