Influence Of The Uses Of Online Support Groups On The Mental Health Of Rare Disease Patient

'Rare disease' is a generalization for a variety of diseases with low incidence,difficult treatment,and scattered in various disease systems.Due to the imperfect system and the relative dispersion of patients in China,the patients have long lacked sufficient medical security and social assistance.Their psychological problems will lead to a decline in the quality of life,which will ultimately shorten the life cycle of patients.In recent years,the continuous development of the Internet and the emergence of online groups give rare disease patients an open platform to seek help quickly and easily in China.Many rare patients communicate with each other through online groups,building confidence and warming each other,easing psychological problems and improving the quality of life.In today's fast-changing media environment,how do the rare disease patients use the community of patients to get support and help in practice?What changes have been made to their mental health by using the online groups?Some studies worldwide have confirmed that the use of network media can affect individual support perception,gratification,and mental health.However,specific research on online groups and rare disease patients is still lacking.Based on the theory of'use and gratifications','social cognition' and the theoretical model of'Internet use-mental health',this study will use questionnaires as the main method and interview observation as a supplement to explore the use and gratifications of the online groups and how the behavior affects mental health.After analyzing the interview data and survey data,it is found that some of the online groups are very active,and the gratification of use is mainly reflected in the four aspects of social support,self-efficacy,information support and communication.Mental health is influenced by the acquisition through the mediator "gratification of use".This study has shown that online support group is an effective channel for the rare disease patients to get supports.Patients should learn to effectively use these platforms to improve their ability to cope with diseases and eliminate bad psychological emotions,actively waiting for medical breakthrough.Also,The government should actively empower rare disease organizations and rare disease online groups to integrate social forces and sustain the hope of the patients.