본 연구는 중도 뇌병변 장애아동 및 가족의 어려움과 요구를 알아보고자 시행되었다. 이를 위해 서울과 경기도 지역의 중도 뇌병변 장애아동 어머니와 관련 전문가 및 기관종사자를 대상으로 초점집단면담을 하였다. 본 연구결과 중도 뇌병변 장애아동 및 가족의 어려움으로 첫째, 경제적 어려움, 둘째, 돌봄ㆍ양육의 어려움, 셋째, 이동 및 접근성에서의 어려움이 있는 것으로 나타났다. 연구 참여자들은 이에 대한 지원 요구로 첫째, 돌봄 서비스의 개선, 둘째, 재활치료 및 의료적 지원, 셋째, 장애특성을 고려한 통합적 지원체계 구축이 필요하다고 하였다. 이와 같은 연구 결과는 중도 뇌병변 장애아동과 가족을 위한 바람직한 정책 방향을 제시하는데 기초가 될 것이라 사료된다.

This study was conducted to understand the difficulties of family and children with severe brain lesions, and to find measures to improve policies related to them. For this, the in-depth interviews were carried out for eleven mothers and specialists. Six mothers are who currently had children with severe brain lesion lived in Seoul and Kyeonggido. Five specialists related to children with severe brain lesions. The study results are like below. First, the study participants experienced difficulties caused by economic problem. Next, the study participants experienced difficulties caused by the care and nurture for people with severe brain lesions. Third, the study participants expressed difficulties in move and access. As the needs measures for people with severe brain lesions, first, the study participants mentioned that the social support systems for care towards severe brain lesions should be improved. Second, the study participants expressed that the rehabilitation and medical support system for people with severe brain lesions should be improved. Third, the study participants thought that the unified administrative support systems should be provided to help parents who had children with severe brain lesions. The study results as above is expected to have positive effect on showing the advisable direction of policies for people with severe brain lesions.