발달장애인의 생애 전환경험(Transition Experience)에 대한 탐색적 연구: 생태학적 관점을 통한 생애주기 기반 지원체계의 보완
An Exploratory Study of the Transition Experience of People with Developmental Disabilities across the Lifespan: Complementing the Life-Cycle-Based Support System through an Ecological Perspective
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초록
본 연구는 보편적 발달이론에 기반한 생애주기 기반 지원체계를 발달장애인에게 적용하는 한계를 보완하고자, 발달장애인의 생애 주요 전환경험(Transition experience)을 생태학적 관점에서 탐색한 연구이다. 이를 위해, 생애전환사건(Transitional life event)에 따른 전환경험에 초점을 맞추어, 주요주제를 도출하고 필요자원 및 서비스에 대한 함의를 도출하고자 하였다. 주요주제를 바탕으로 생태학적 관점에서 미시(개인과 가족), 중시(지역사회), 거시체계(사회적 통념)에 이르는 전환사건과 경험의 하위주제를 도출하였다. 본 연구에서는 질적연구를 수행하고 주제분석방법(Thematic analysis)을 사용하여 자료를 분석하였으며, 9명의 전문가/활동가 혹은 부모를 대상으로 개별인터뷰를 수행하였다. 연구결과, 5가지의 전환사건 별 전환경험 주요주제를 도출하였으며 주제별로 각각 3가지 총15가지 하위주제를 도출하여, 총 20가지의 주제를 도출하였다. 5가지 전환경험의 주요주제는 1)장애진단: 비장애인에서 장애가 있는 삶으로, 2)초등학교 입학: 특수학교 혹은 통합학급으로, 3)사회진입: 청소년에서 명목상 성인으로, 4)연애경험: 가까운 사람과의 애정관계로, 5)주요돌봄인 사망: 서포트자원 상실과 급격한 노화로이다. 주요 주제분석을 바탕으로 각 주제별로 체계에 기반한 전환경험의 하위주제를 도출하였으며, 이를 통해 발달장애인 생애 전환경험에 따른 지원을 위한 함의를 도출하였다.
Abstract
This study used an ecological perspective to explore the major transitional experiences of people with developmental disabilities to complement the limitations of providing this group with life-cycle-based support systems built using universal developmental theory. To this end, this study focused on transitional life events in the target group to identify major themes and identify the implications for providing the necessary resources and services. Based on the main themes, sub-themes of transitional events and experiences were derived from the ecological perspective of the micro (individual and family), meso (community), and macro (broad social norms) systems. We conducted qualitative research via a thematic analysis of the data and individual interviews with nine experts/activists or parents. Through those efforts, we identified five major themes of pre-experience for each transition event and three sub-themes for each theme, totaling 15 themes. The five main themes of pre-experience were (a) Disability diagnosis: From non-disabled to disabled; (b) Entering elementary school: Special school or integrated class; (c) Entering adult social life: From adolescence to nominal adulthood; (d) Relationship experience: From a romantic relationship with a close person; and (e) Death of a primary caregiver: Loss of support resources and rapid aging. We then derived the sub-themes of systematic life experiences for each main theme and identified the implications for support based on the life experiences of people with developmental disabilities.
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