Abstract
Increasingly, people with diverse health conditions turn to social media to share their illness experiences or seek advice from others with similar health concerns. This unstructured medium may represent a platform on which individuals with severe mental illness naturally provide and receive peer support. Peer support includes a system of mutual giving and receiving where individuals with severe mental illness can offer hope, companionship, and encouragement to others facing similar challenges. In this study we explore the phenomenon of individuals with severe mental illness uploading videos to YouTube, and posting and responding to comments as a form of naturally occurring peer support. We also consider the potential risks and benefits of self-disclosure and interacting with others on YouTube. To address these questions, we used qualitative inquiry informed by emerging techniques in online ethnography. We analyzed n = 3,044 comments posted to 19 videos uploaded by individuals who self-identified as having schizophrenia, schizoaffective disorder, or bipolar disorder. We found peer support across four themes: minimizing a sense of isolation and providing hope; finding support through peer exchange and reciprocity; sharing strategies for coping with day-to-day challenges of severe mental illness; and learning from shared experiences of medication use and seeking mental health care. These broad themes are consistent with accepted notions of peer support in severe mental illness as a voluntary process aimed at inclusion and mutual advancement through shared experience and developing a sense of community. Our data suggest that the lack of anonymity and associated risks of being identified as an individual with severe mental illness on YouTube seem to be overlooked by those who posted comments or uploaded videos. Whether or not this platform can provide benefits for a wider community of individuals with severe mental illness remains uncertain.
Highlights
How might the phenomenon of individuals with severe mental illness (SMI) such as schizophrenia, schizoaffective disorder, or bipolar disorder, who share their illness experiences through video narratives uploaded onto platforms like YouTube constitute the development of a naturally emerging peer support system? Or does this activity represent a risky process of self-exposure, and susceptibility to negative comments, unsolicited content, or exposure to harmful influences of others?
With evidence documenting the widespread use of YouTube among numerous patient groups, in the current study we aim to explore comments posted to YouTube by individuals who selfidentify as having a SMI, taking the perspective that naturally occurring peer support through social media may be beneficial
The 19 videos were uploaded by 19 different individuals of which 8 self-identified as being diagnosed with bipolar disorder, 7 with schizoaffective disorder, and 4 with schizophrenia
Summary
How might the phenomenon of individuals with severe mental illness (SMI) such as schizophrenia, schizoaffective disorder, or bipolar disorder, who share their illness experiences through video narratives uploaded onto platforms like YouTube constitute the development of a naturally emerging peer support system? Or does this activity represent a risky process of self-exposure, and susceptibility to negative comments, unsolicited content, or exposure to harmful influences of others?YouTube is a video-sharing website created in 2005 that is currently the third most popular social media website worldwide after Facebook and Google+ [1]. How might the phenomenon of individuals with severe mental illness (SMI) such as schizophrenia, schizoaffective disorder, or bipolar disorder, who share their illness experiences through video narratives uploaded onto platforms like YouTube constitute the development of a naturally emerging peer support system? While the potential harms and benefits of connecting with others to share health information through social media have been discussed extensively [3,4,5], diverse patient groups with sensitive health conditions are increasingly turning to social media websites like YouTube to share their illness experiences or seek advice from others with similar conditions [4,6]. As people with diverse health conditions seek greater online connectivity, it is not clear whether YouTube may represent a platform by which individuals with SMI can provide and receive peer support or whether unforeseen risks might prevent such support. With the increasing popularity of social media and its growing importance as a means to connect and interact with others, there is a need to consider whether informal peer support naturally occurs outside of professional services and across a popular social media website such as YouTube
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