부모의 관점에서 본 희귀난치성 질환이 있는 아동의 학교생활 경험과 교육적 지원 요구
School Life Experiences and Educational Support Needs of Children With Rare and Incurable Diseases: A Parent's Perspective
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본 연구는 희귀난치성 질환이 있는 아동의 학교생활 경험을 심층적으로 이해하고, 이들 환아가 학교생활에 잘 적응하는 데 필요한 교육적 지원 요구를 파악하는 것을 목적으로 하였다. 이를 위해서 희귀난치성 질환이 있는 18세 미만의 자녀를 양육하는 부모 총 15명을 대상으로 세 차례의 비대면 포커스그룹인터뷰를 시행하였다. 연구 결과, 희귀난치성 질환이 있는 아동은 학교생활에서 보건관리 지원의 부재로 인한 어려움, 교육적 기회의 불평등과 평가 기준의 문제, 비교과 활동 참여의 제한, 편견과 사회적 고립을 경험하고 있었다. 이러한 문제를 해결하기 위해 연구에서는 교내 의료서비스와 돌봄 인력 지원, 특수학교와 특수교사 확충, 개별화된 프로그램과 평가시스템 도입, 포용적 교육문화 조성, 부모의 정보 접근성 및 정책 리터러시 향상을 제언하였다. 특히 희귀난치성 질환이 있는 아동이 학업을 지속하고 학교생활에 잘 적응할 수 있도록 지원하기 위해서는 의료전문가, 교사, 그리고 가족 간의 협력이 필수적이므로, 아동을 둘러싼 다양한 환경 간의 중간체계를 강화할 수 있는 플랫폼과 시스템을 마련해야 한다는 실질적인 대안을 제시하였다. 본 연구는 희귀난치성 질환이 있는 아동의 교육권 보장을 위한 제도적 개입과 환경 개선의 필요성을 강조하며, 교육 정책 수립에 실질적으로 기여할 수 있는 기초자료를 제공하였다는 점에서 의의가 있다.
Abstract
This study aims to comprehensively understand the school experiences and educational support needs of children with rare and incurable diseases. To achieve this, focus group interviews were conducted with 15 parents of children under the ages of 18 who have rare and incurable diseases. The research findings reveal that children with rare diseases encounter challenges such as a lack of health management support, inequities in educational opportunities, limited participation in extracurricular activities, and experiences of both prejudice and social isolation. To address these important issues, the study recommends enhancing in-school medical services, increasing special education resources, implementing individualized education and assessment systems, fostering inclusive educational culture, and improving information accessibility for parents. This study highlights the need for institutional intervention and environmental improvements to protect the educational rights of children with rare and incurable diseases; it will also serves as foundational data that can meaningfully contribute to the development of educational policy.
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