Journal of Industrial Convergence (산업융합연구)

DAEHAN Society of Industrial Management (대한산업경영학회)
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Care and future expectations of families with severe disabilities

중증장애 가족의 돌봄과 미래기대

  • 신경안 (동서울대학교 사회복지학과)
  • Received : 2020.12.03
  • Accepted : 2020.12.20
  • Published : 2020.12.31
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Abstract

Care of people with severe disabilities requires care throughout their life cycle compared to non-disabled families. For this reason, carers of severely handicapped families are highly likely to have negative feelings throughout the family as well as daily stress. Disabled families also have a high rate of experiencing difficulties between non-disabled children or married couples in life centered on the disabled. In particular, the rapid aging in Korea affects the lives of the elderly disabilities along with the aging of the caregivers. The study explored alternatives to realistic support through the past and present experiences of caregivers with disabilities through qualitative research methods, and derived hopes and expectations for the future as follows.First, after confirming the disability for infants and toddlers with disabilities, information about the support system or system is provided from the rating agency. Second, providing "customized care support" suitable for the type of disability or individual characteristics at the social, political, institutional, and economic levels. Third, the provision of programs for non-disabled children and the provision of healing programs only for families with disabilities or those with disabilities. Fourth, the provision of spaces and programs that provide rest and rest for adults with disabilities. Fifth, the application of a long-term care system for the elderly reflecting the aging age of the disabled and institutionalization of community care for the disabled. The research is meaningful in that it presents discussion points for improving the quality of life of adults and the elderly with disabilities.

중증장애인의 돌봄은 비장애 가족에 비해 전 생애주기에 돌봄이 필요하다. 이런 이유로 중증장애 가족의 돌봄자는 일상적인 스트레스는 물론 가족 전체에 부정적인 감정을 가질 우려가 높다. 장애가족 역시 장애인을 중심으로 이루어지는 생활에서 비 장애자녀나 부부간의 어려움을 경험하는 비율이 높다. 특히 우리나라의 급격한 고령화는 장애 돌봄자의 노령화와 함께 노인장애인의 삶에도 영향을 미친다. 연구는 질적 연구방법을 통해 장애인 돌봄자의 과거와 현재 경험을 통한 현실적 지원에 대한 대안을 탐색하였으며, 미래에 대한 희망과 기대를 다음과 같이 도출하였다. 첫째, 장애 영유아에 대한 장애확인 후 지원체계나 제도에 대한 정보전달이 등급판정 기관에서부터 제공. 둘째, 장애유형이나 개별특성에 적합한 '맞춤형 돌봄지원'의 사회, 정치, 제도, 경제적 차원에서의 제공. 셋째, 비장애 자녀대상의 프로그램의 제공과 장애인을 포함하거나 혹은 장애가족만을 위한 힐링 프로그램의 제공. 넷째, 성인장애인을 위한 휴식과 쉼을 제공하는 공간과 프로그램의 제공. 다섯째, 장애인 노화연령을 반영한 노인장기요양제도 적용과 장애인 커뮤니티케어의 제도화이다. 이러한 대안제시를 통해 연구는 성인과 노인 장애인의 삶의 질 향상을 위한 논의점의 제시에 연구의 의의를 두고 있다.

Keywords

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