Concerns of South Korean patients and family members affected with genetic conditions: a content analysis of internet website messages

Abstract

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.