Department of Medical Ethics and Health Law, Leiden University Medical Centre, Albinusdreef 2, 2333ZA Leiden, Netherlands.
Davidson college, Davidson, NC, USA.
Mult Scler Relat Disord. 2019 Jan;27:121-126. doi: 10.1016/j.msard.2018.09.020. Epub 2018 Sep 19.
Multiple Sclerosis (MS) can impair social participation and lead to isolation. Online platforms could help to increase this participation for individuals with MS, circumventing potential physical, emotional and cognitive barriers. Yet, minimal research has examined the differential impact of online versus face-to face interaction on happiness.
In our study we analyzed the relationship between honesty, anonymity, and happiness in individuals diagnosed with MS, who reported using online social networks.
We merged answers of 440 individuals from the Davidson Social Participation Survey with the NARCOMS Enrollment and Update Surveys. Descriptive analysis, T-tests, Pearson correlations and OLS multivariate regression analysis were conducted.
Individuals reported they could be more honest in face-to face interactions than with online contacts, regardless of whether they were anonymous or identifiable. Happiness was associated with honesty or authenticity in in-person interactions. We found a negative association between happiness and honesty for anonymous participants online, and no association between happiness and honesty when using real names. Consistent results emerged for individuals using patient-specific and generic platforms.
Our study implies that anonymity may not improve happiness of individuals with MS. We need to address structural barriers to enable their in-person interactions.
多发性硬化症 (MS) 可损害社交参与能力，导致孤立。在线平台可以帮助 MS 患者增加社交参与度，避免潜在的身体、情感和认知障碍。然而，很少有研究探讨线上与线下互动对幸福感的不同影响。
在本研究中，我们分析了报告使用在线社交网络的 MS 患者中诚实、匿名和幸福感之间的关系。
我们将 440 名个体的答案与 NARCOMS 登记和更新调查合并。进行了描述性分析、T 检验、皮尔逊相关分析和 OLS 多元回归分析。
无论匿名与否，个体报告说他们在面对面互动中比在线联系人更诚实。幸福感与面对面互动中的诚实或真实性相关。我们发现匿名在线参与者的幸福感与诚实之间存在负相关，而使用真实姓名时则不存在这种相关性。使用特定于患者和通用平台的个体也出现了一致的结果。
我们的研究表明，匿名可能不会提高 MS 患者的幸福感。我们需要解决结构性障碍，以促进他们的面对面互动。
