Social Support Research On Unknown Disease Online Patient Communities

Online patient communities are increasingly becoming an important channel for patients to access health information.In terms of practice,unorganized online patient communities occupy the majority,but dedicated research is rare,and previous studies need to be updated in terms of community practices and research methods.In this paper,we use a combination of participant observation,semi-structured interviews,and rooting theory to examine what processes unorganized online patient communities have undergone at the macro and micro levels to provide effective social support,what support models have emerged,and what limitations exist in their social support and directions for improvement.The study found that social support in the community of rosacea patients experienced supportive content interactions at the macro level and social exchanges based on psychological distance and cost-benefit relationships at the micro level.From a macro perspective,social support supply is driven by the external supply of social support sources,social support extensions,and internal demand for social support.From the micro perspective,different types of supporters build patient communities through the linkage of public platforms and private communities,and finally social support is exchanged under the influence of two mechanisms of psychological distance and social support cost-benefit.Based on individual heterogeneous resources,supporters and supported have formed three types of social support models,such as equal reciprocity model,fair trade model,and authority gift model,with the help of platform infrastructure such as strategic symbolic system.These models collaborate and limit each other around different exchange principles,communication strategies,and complementary mechanisms to facilitate the transmission,continuation,and regulation of social support,allowing the survival of this directed cross-network interaction from public platforms into private communities.Through the above analysis,I found that the dynamic individual members are the bridge that connects the various research perspectives and issues of social support in online patient communities.The individual members,by virtue of their dynamism,intervene in the operation of supportive content interaction and social support models in the community.Combined with the supportive content interaction model and the classification of social support models proposed in this paper,they can provide practical suggestions for the healthy development of the community and the efficient allocation of social support resources from the patient’s perspective.Social support in the community of rosacea patients is deficient in continuity,reliability and openness,and should be subsequently improved from both inside and outside the community: supporters should collaborate to establish a community self-help manual and improve patient capacity building;the supported should make full use of various communication strategies and exchange principles,pay attention to psychological feedback and reduce supporters’ implementation costs;the government should focus on enriching doctor-patient communication channels and cracking down on community misconduct;and the platform should strengthen psychological feedback display,supporter type identification and information review,and jointly promote the standardization and transparency of social support.