Exploring Unmet Information Needs of People with Parkinson’s Disease and Their Families: Focusing on Information Sharing in an Online Patient Community

Abstract

This study aimed to examine the unmet information needs of people with Parkinson’s disease and their family members by analyzing Parkinson’s disease-related posts in online communities. Data were collected from one of the largest online people with Parkinson’s disease communities used in South Korea. The word cloud, the main questions from the free-posting messages, as well as the frequently asked symptoms and side effects of the medication, were analyzed using content analysis. The commonly mentioned main questions from the free-posting messages have pertained to treatment-related information, such as effects and side effects of medication, deep brain stimulation, and complementary and alternative medicine. People with Parkinson’s disease and their families depend not only on health care providers but also on using online communities to find the information that they need. However, there is a need for treatment-specific information, such as anti-Parkinson drugs, deep brain stimulation, and complementary alternative therapies. As for the method of providing information for people with Parkinson’s disease and their families, it will be effective to provide tailored education services using online communities and social media by using their information needs and preferred resources.