韓國食生活文化學會誌 제37권 제2호 (p.143-152)

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

Perception and Demand of Primary Caregivers and Clinical Experts for the Dietary Management of Children with Galactosemia in Korea
키워드 :
Galactosemia,rare metabolic disease,dietary management,qualitative study

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

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.