Utilization of social media and web forums by HIV patients - A cross-sectional study on adherence and reported anxiety level

Due to the high stigma surrounding the Human Immunodeficiency Virus (HIV), people living with HIV (PLWH) often reach out peers over the Internet for emotional and social support. The purpose of this study was to assess the characteristics of PLWH who use HIV internet forums. A cross-sectional study was conducted using an online survey investigating demographic characteristics of PLWH, level of satisfaction of the HIV Internet forums, time living with HIV, forum users' anxiety levels, self-reported adherence to antiretroviral treatment (ART), and reasons for missing pills (n = 222). Logistic regression models were constructed to compare the use of general HIV forums with social networking sites, general HIV forums with group emails, and social networking sites with group emails. Two hundred and twenty-two patients responded to the survey. Social networking sites were used by recently diagnosed PLWH who were on antiretroviral treatment (ART) > 1 year. Young patients (≤ 40 years) and those diagnosed < 1 year before, tended to use social networking sites, while older patients (> 40 years), those diagnosed > 5 years, and from low- and middle-income countries, were more likely to use emailing lists. There was no significant difference between PLWH's adherence to treatment and anxiety levels and the usage of different Internet forums. PLWH's Internet resource choice varied depending on the availability of Internet and illness duration. Different segments of the population could be reached via social networking sites versus group emails to provide HIV information.