뇌성마비장애인 출현율 연구의 동향과 과제
Research Trends and Tasks in Prevalence of People with Cerebral Palsy
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연구목적: 이 연구는 뇌성마비장애인의 국내 및 국외의 출현율 연구 동향을 살펴보고 우리나라에서의 뇌성마비장애인 출현율 연구와 관련된 향후 과제를 제시하는 데 목적이 있다. 연구의 내용으로는 첫째, 우리나라에서의 뇌성마비장애인 출현율 관련 연구 실태 제시, 둘째, 유럽, 호주, 미국에서의 뇌성마비장애인 출현율 연구 동향 제시, 셋째, 우리나라에서의 뇌성마비장애인 출현율 연구를 위한 과제 제시 등이다. 연구방법: 이 연구는 문헌연구를 중심으로 하고 있으며, 국내의 학술지 논문, 국가에서 실시하는 장애인실태조사 및 특수교육실태조사 등의 보고서를 주로 분석하였으며, 외국의 뇌성마비 출현율 관련 학술논문과 유럽, 호주, 미국의 웹기반 뇌성마비 등록, 정보, 정책 개발을 위한 시스템을 중심으로 연구를 수행하였다. 연구결과: 이 연구의 결과로 우리나라에서는 뇌성마비가 뇌병변장애에 포함되어 뇌성마비장애인에 대한 별도의 출현율 연구가 거의 이루어지지 않았고, 장애인 실태조사에서의 뇌성마비장애인 출현율은 외국의 연구에 비하여 매우 낮은 수치이다. 반면에 미국, 유럽, 호주에서는 국가에서 뇌성마비장애인에 대한 실태조사 및 출현율 연구 등을 웹기반 자료를 토대로 수행함으로써 뇌성마비장애인 출현율은 약 0.2%인 것을 도출하였고, 이를 정책 개발, 예방, 치료 및 서비스 등에 활용하고 있다. 특히 유럽의 뇌성마비 감독(SCPE)이나 호주의 뇌성마비등록(ACRP)과 같은 시스템은 뇌성마비장애인 출현율 연구 및 서비스 제공, 정책 개발에 크게 기여하였다. 결론: 우리나라에서는 뇌성마비 출현율에 대하여 연구된 바가 거의 없으므로 외국의 사례를 참고하여 향후 뇌성마비장애인의 판정기준 개발, 출현율 연구, 웹기반 시스템 개발 등을 통하여 뇌성마비 특성 및 발생 경향 분석, 예방, 서비스 제공, 정보 제공, 정책 개발 등이 이루어져야 한다.
Abstract
Purpose: This study investigated research trends in prevalence of people with cerebral palsy(CP) in Korea and foreign countries and suggested future tasks to be carried out in Korea. Method: A literature review was conducted by including journal articles and research reports about CP, and national surveys for people with disabilities and special education status in Korea. Also, journal articles, research reports, and web-sites information on CP in Europe, Australia, United States and other foreign countries were analyzed. Results: Research on prevalence for people with CP in Korea was scarce and even could not figure out the prevalence. However, eight Europe countries established the Surveillance of Cerebral Palsy in Europe(SCPE) and have untaken collaborative registering networks. Australian Cerebral Palsy Register(ACPR) and Cerebral Palsy Research Registry(CPRR) in USA are also research database of information for people with CP. The prevalence rates of CP in foreign countries could be generalized about 0.2%. Conclusion: Three future tasks of prevalence research for people with CP in Korea should be carried out: Developing determination criteria of CP, taking research about prevalence and characteristics for people with CP, and conducting web-based research system for people with CP.
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