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국내 갈락토스혈증 아동의 식생활 관리에 대한 주 보호자와 임상전문가의 인식 및 지원 요구도 조사 KCI 등재

Perception and Demand of Primary Caregivers and Clinical Experts for the Dietary Management of Children with Galactosemia in Korea

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  • URLhttps://db.koreascholar.com/Article/Detail/414212
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韓國食生活文化學會誌 (한국식생활문화학회지)
한국식생활문화학회 (The Korean Society Of Food Culture)
초록

Galactosemia is a rare genetic metabolic disease caused by galactose and its metabolites generated during carbohydrate metabolism, which is relatively rare in Asian countries, including Korea. Patients with galactosemia should be treated with a galactose-restricted diet. However, information is lacking about the exact content of galactose in food, and dietary guidelines for patients with galactosemia in Korea. This study aims to recognize the difficulties faced by parents and clinical experts of patients with galactosemia, and understand their demands. Totally, 5 parents of children diagnosed with galactosemia and 5 clinical professionals participated in the focus group interviews. The parents’ interview focused on the daily life of the patient, which included diet and social difficulties. The clinical experts mainly answered about medical care, including the number and status of patients, and their suggestions for effective treatment. Most parents were worried about social isolation due to conflicts in the family as well as in society due to a lack of understanding of the disease. The clinical experts stated the absence of a disease management system as the greatest problem. An integrated support system for patients with galactosemia, which includes appropriate dietary guidelines by considering the domestic environment, is required.

목차
Abstract
I. 서 론
II. 연구내용 및 방법
    1. 연구대상 및 기간
    2. 자료 수집 및 분석
    3. 신뢰도 및 타당도 확보를 위한 노력
III. 결과 및 고찰
    1. 연구 결과
IV. 요약 및 결론
감사의 글
Conflict of Interest
References
저자
  • 임서정(이화여자대학교 식품영양학과) | Seojeong Yim (Department of Nutritional Science and Food Management, Ewha Womans University)
  • 서혜지(이화여자대학교 식품영양학과) | Hyeji Seo (Department of Nutritional Science and Food Management, Ewha Womans University)
  • 김유리(이화여자대학교 식품영양학과) | Yuri Kim (Department of Nutritional Science and Food Management, Ewha Womans University)
  • 오지은(이화여자대학교 신산업융합대학) | Jieun Oh (College of Science and Industry Convergence, Ewha Womans University) Corresponding author