Journal of Digital Convergence (디지털융복합연구)

The Society of Digital Policy and Management (한국디지털정책학회)
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Convergence Study on Caregiving Burden of Families with Patients Suffering from Lou Gehrig's Disease

루게릭환자 가족의 부양부담에 관한 융복합 연구

  • 허숙민 (일본 츠쿠바대학교 인간계) ;
  • 정희경 (광주대학교 사회복지학부)
  • Received : 2015.06.17
  • Accepted : 2015.08.20
  • Published : 2015.08.28
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Abstract

The purpose of this study is to investigate patients with Lou Gehrig's disease, their families, and their actual conditions of the disease, and to find the factors to alleviate caregiving burden and the needs of service. According to the study, the sociodemographic characteristics of the patients with Lou Gehrig's disease and their patients, the disease and caregiving, and activity support service didn't influence alleviation of caregiving burden. When the main caregiver of the patient was not a spouse, or graduated from high school and less, and when the disease was diagnosed initially, there was a difference in caregiving burden. Based on the results, this study suggested that it would be necessary to make medical support suitable to Lou Gehrig's disease and come up with a convergence policy to support personalized and specialized welfare service.

본 연구는 루게릭환자 및 그 가족을 대상으로 현재 질환과 관련한 실태를 파악하고 부양부담을 경감시키는 요인과 필요한 서비스들을 밝히는데 목적을 두었다. 연구결과 루게릭환자 및 그 가족의 인구사회학적 특성이나 질환 및 수발과 관련한 요인, 활동지원서비스 관련 요인 어느 것에서도 부양부담을 경감시키는데 영향을 미치는 요인은 없는 것으로 나타났다. 다만 환자와 주부양자의 관계가 배우자가 아니거나, 이들의 학력이 고졸이하인 경우, 질병의 최초진단시기에 따라서만 부양부담에 차이가 있는 것으로 나타났다. 이러한 연구결과를 토대로 제안하면, 현재 제공되고 있는 서비스의 한계를 인식하고, 루게릭이라는 질환에 맞는 의료적 지원과 더블어 개별화되고 전문화된 복지서비스를 함께 지원할 수 있는 융복합적인 정책지원이 필요하다고 볼 수 있다.

Keywords

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