Too much online support can be harmful for HIV patients

For individuals living with HIV, online communities provide the support system they need to engage in positive self-care, which is critical in managing the virus and its ill effects.

However, as new School of Management research finds, beyond a certain threshold, online support can become overwhelming for HIV patients, leading to negative health behaviors.

“Despite advancements in research and treatment, HIV is still a devastating diagnosis and a highly stigmatized disease,” says senior author Rajiv Kishore, associate professor of management science and systems in the School of Management. “Many patients feel isolated and uncomfortable revealing their diagnosis, even to close friends and family. Without that support system, many HIV patients turn to social media and online forms for emotional reassurance and health-related information.”

Forthcoming in the Journal of the American Medical Informatics Association, the study analyzed more than 30,000 discussion threads from an online community for people living with or affected by HIV/AIDS from May 2006 to March 2017, representing about 15,500 users and 330,000 individual posts.

Using text mining and linguistic analysis methods, the researchers measured the emotional support or information the posts provided, from both objective sources and personal experience, as well as the level of self-care patients expressed in response. The researchers collaborated with three HIV health specialists to ensure their methods were valid.

“Initially, we found that as an individual receives more words of encouragement and health information, their self-care improves,” Kishore says. “They develop comforting relationships and better understand the virus and how to manage it, which encourages them to engage in positive self-care behaviors.”

Above a certain level, however, too much social support negatively affects HIV patients’ self-care behaviors, the study found.

“Self-care is about having control, feeling like you can make a difference in your own health,” Kishore says. “Many people perceive excessive emotional support as forced optimism and may become stressed and lose hope as a result. Similarly, patients who receive too much information may become overwhelmed and give up on reading material that’s necessary for understanding and implementing appropriate health behaviors.

“In both cases, we find patients cope by disengaging from productive self-care,” he says.

Next, the researchers plan to replicate their study with other stigmatized and non-stigmatized chronic diseases.

Kishore’s co-authors on the study were School of Management doctoral students Xunyi Wang and Srikanth Parameswaran, along with Darshan Mahendra Bagul, a master’s student in the UB Department of Computer Science and Engineering.