From the beginning of the internet era, both HIV-positive people and heath care providers alike have sought medical information online. Over the course of the HIV epidemic, web-based platforms have grown in numbers and sophistication. However, because anyone can post virtually anything on the internet, it is necessary to employ both caution and critical thinking when attempting to self-diagnose a medical condition or to evaluate health care information, including implausible cures.
The internet has also provided a platform for online support groups, not just for HIV but for a variety of conditions, which have become prominent patient resources. Such web-based connections are valuable both for those individuals in remote or rural locations and for persons with highly stigmatized conditions such as HIV, who may be reluctant to reveal their status in person to others. It is often the very patients who are most stigmatized who have limited resources, live in isolation, and seek support from online health communities. There is no doubt that such online support groups have provided much-needed assistance, but is there a point at which the benefit of such groups peaks or even begins to diminish? A new study from the University of Buffalo School of Management indicates that too much online support can actually be deleterious to self-care behavior.
Despite the fact that participating individuals may not have met in person, online support groups benefit greatly from the willingness of their members to share their personal experiences of managing their illness. Such intimate stories add an emotional depth, a positive mood, and even inspiration to these interactions. Nevertheless, until this study, the impact of online support on actually improving HIV patient self-care behavior had not been specifically evaluated.
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The investigators began this evaluation with several specific approaches, the first of which postulated that a good mood and happiness expressed in online support groups may not necessarily translate into improved self-care (defined as the range of activities individuals undertake to enhance health, prevent disease, evaluate symptoms, and restore health).
They also identified sub-dimensions of "social support" to better capture subtle variations, by defining two major types of support: 1) informational support (including both objective information such as facts and statistics) along with experiential information (such as the actual experiences, insights, and strategies of other patients) and 2) emotional support consisting of an emotional tone (the intent to cheer or provide comfort) and community involvement (the extent to which online community members participate in conversation threads).
The authors predicted that with low levels of objective information (facts about HIV), patients would have limited understanding of their disease but that with increasing support they would become better informed and engage in greater levels of self-care behavior. However, beyond a certain threshold, the result could be information overload, resulting in stress for the patient and an actual decline in self-care. Additionally, the authors speculated that emotional support could inspire patients who see that others are successfully coping with HIV, thereby providing assurance and reinforcement. Yet, beyond a certain threshold of emotional input and feedback, those seeking support would begin to perceive an excessive emotional tone as "forced optimism," which might lead them to use negative coping strategies, such as denial and disengagement from self-care.
The investigators analyzed over 30,000 conversational threads from five POZ forums with dates ranging from May 2006 to March 2017. These threads represented nearly 16,000 unique users and 330,000 posts. Text mining and linguistic analysis were utilized to develop libraries and self-generated dictionaries to measure both the emotional support and information the posts provided, including those resulting from objective sources and personal experience, as well as the level of self-care patients expressed in response. Sample threads were manually reviewed and coded by three different HIV experts to validate the measure of the dependent variable (self-care behavior). These results were further analyzed using regression models to identify relationships among the variables.
The authors did indeed find that, beyond a threshold, both informational and emotional online social support had an adverse impact on the self-care behavior of HIV patients. The results suggest that caution should be exercised in the use of online health community interventions for HIV patients, and perhaps for patients with other stigmatized chronic diseases, as well. The authors found an inverse-U relationship between both objective information and emotional tone impacting self-care behavior. That is, beyond a certain threshold, there are diminishing returns for such online support groups. Caution must therefore be exercised when using social media to provide objective information for HIV patients (and patients with other stigmatized conditions), as too much can be overwhelming, causing patients to give up on reading material that is essential for understanding and implementing appropriate health behaviors.
The authors also found that, to a point, higher levels of experiential information and community involvement were positively related to self-care behavior. The higher the level of experiential information provided by online community members who respond to an individual member, the more likely that member would engage in self-care behavior. Additionally, the higher the involvement of online community members who respond to an individual member, the more likely they would engage in self-care behavior. Yet, despite these positive influences on self-care behavior, there is a point beyond which excessive emotional and informational support can not only reduce levels of self-care behavior but actually reinforce negative coping mechanisms, such as denial and disengagement from self-care.
The authors plan to replicate this research for other highly stigmatized conditions. For those living with HIV, this study illuminates an important note of caution with online support groups. As noted, such virtual communities create life-saving connections for a broad array of individuals, but beyond a certain threshold, excessive emotional support or objective information can actually be deleterious to a person's level of self-care. This is important both for persons living with HIV and medical providers as we continue to develop self-care strategies that utilize technology but that also recognize the limits of patients' abilities to optimally integrate this support into their own management of HIV.