Kang Heejung, McCarthy Veach Patricia, Leroy Bonnie S
Department of Human Genetics, University of Pittsburgh, Pittsburgh, PA, USA.
J Genet Couns. 2010 Jun;19(3):280-95. doi: 10.1007/s10897-009-9277-1. Epub 2010 Jan 20.
The genetic counseling profession is expanding globally, and many countries, such as South Korea, are in the early stages of developing programs to prepare healthcare professionals specifically trained as genetic counselors. However, little research has investigated the concerns of South Korean patients and family members that have genetic conditions. The present study assessed their concerns by accessing and analyzing messages posted to websites devoted to genetic conditions. Eighteen websites were accessed-1 website concerns general genetic conditions, and 17 concern specific conditions. A sample of 700 messages was translated into English and analyzed using grounded theory analysis. Three major themes and 30 categories were extracted. The themes are: 1) Medical Concerns (e.g., clinical symptoms, diagnosis, prognosis, recurrence risk, prevention, inheritance); 2) Psychosocial Concerns (e.g., emotions, social stigma, social support); and 3) Management Concerns (e.g., therapy and alternative treatments, education, financial support, nutrition, medical facilities, folk remedies). The findings provide insight into the types of information and genetic counseling services that might benefit South Korean individuals and family members.
遗传咨询行业正在全球范围内不断发展，许多国家，如韩国，正处于制定相关项目的初期阶段，这些项目旨在培养经过专门培训的遗传咨询师这一医疗专业人员。然而，很少有研究调查过患有遗传疾病的韩国患者及其家庭成员所关心的问题。本研究通过访问和分析发布在致力于遗传疾病的网站上的信息，评估了他们所关心的问题。访问了18个网站——1个网站涉及一般遗传疾病，17个涉及特定疾病。抽取了700条信息样本并翻译成英文，然后采用扎根理论分析法进行分析。提取出了三大主题和30个类别。这些主题分别是：1）医疗方面的担忧（如临床症状、诊断、预后、复发风险、预防、遗传）；2）心理社会方面的担忧（如情绪、社会污名、社会支持）；3）管理方面的担忧（如治疗和替代疗法、教育、经济支持、营养、医疗设施、民间疗法）。这些研究结果为可能使韩国个人和家庭成员受益的信息类型和遗传咨询服务提供了见解。
