Journal of the Korean Society of Food Culture (한국식생활문화학회지)

Korean Society of Food Culture (한국식생활문화학회)
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Perception and Demand of Primary Caregivers and Clinical Experts for the Dietary Management of Children with Galactosemia in Korea

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

  • Yim, Seojeong (Department of Nutritional Science and Food Management, Ewha Womans University) ;
  • Seo, Hyeji (Department of Nutritional Science and Food Management, Ewha Womans University) ;
  • Kim, Yuri (Department of Nutritional Science and Food Management, Ewha Womans University) ;
  • Oh, Jieun (College of Science and Industry Convergence, Ewha Womans University)
  • 임서정 (이화여자대학교 식품영양학과) ;
  • 서혜지 (이화여자대학교 식품영양학과) ;
  • 김유리 (이화여자대학교 식품영양학과) ;
  • 오지은 (이화여자대학교 신산업융합대학)
  • Received : 2022.04.06
  • Accepted : 2022.04.30
  • Published : 2022.04.30
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Abstract

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.

Keywords

Acknowledgement

본 연구는 농촌진흥청의 국가연구개발사업(과제번호: PJ0156002021)의 지원을 받아 수행되었습니다. 인터뷰에 진심으로 응해주신 분들과 논문 교정을 도와주신 교수님과 심사위원분들께 감사드립니다.

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