People with severe mental illness such as schizophrenia, schizoaffective disorder or bipolar disorder use a popular social media website like YouTube to provide and receive naturally occurring peer support, Dartmouth researchers report in the journal PLOS ONE.

“What we found most surprising about our findings was that people with severe mental illness were so open about their illness experiences on a public social media website like YouTube,” said lead author John Naslund, A PhD student in health policy at The Dartmouth Institute for Health Policy & Clinical Practice. “We saw that people with severe mental illness did not appear to be concerned about the risks of openly sharing their personal illness experiences because they really wanted to help others with similar mental health problems.”

Naslund and colleagues found that people with severe mental illness used YouTube to feel less alone and to find hope, to support and to defend each other, and to share personal stories and strategies for coping with day-to-day challenges. They also sought to learn from the experiences of others about using medications and seeking mental health care.

“It helps them to overcome fears associated with living with mental illness, and it also creates a sense of community among these individuals,” the researchers said.

Severe mental illness such as schizophrenia, schizoaffective disorder, and bipolar disorder are among the leading causes of disability worldwide. These serious mental illnesses are also associated with a great deal of stigma and discrimination.

The researchers used a method called online ethnography to analyze n=3,044 comments posted to 19 videos uploaded by individuals who self-identified as having schizophrenia, schizoaffective disorder or bipolar disorder. They then used qualitative methods to analyze the comments and find common themes in the data.

“What is also important is that our findings are consistent with how peer support is viewed in mental health research and practice, which suggests that YouTube or other social media websites might help to extend the reach of informal peer support activities between people with severe mental illness,” Naslund said.

The research does have limitations, however, in that the work was exploratory. “Therefore, it was not possible for us to determine whether YouTube can provide the benefits of peer support to a wider community of individuals with severe mental illness,” he said.

Notes about this psychology research

Contact: Annmarie Christensen – Dartmouth University

Source: Dartmouth University press release

Image Source: The image is adapted from the Dartmouth University press release

Original Research: Full open access research for “Naturally Occurring Peer Support through Social Media: The Experiences of Individuals with Severe Mental Illness Using YouTube” by John A. Naslund, Stuart W. Grande, Kelly A. Aschbrenner, and Glyn Elwyn in PLOS ONE. Published online October 15 2014 doi:10.1371/journal.pone.0110171

Open Access Neuroscience Abstract

Naturally Occurring Peer Support through Social Media: The Experiences of Individuals with Severe Mental Illness Using YouTube

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.

“Naturally Occurring Peer Support through Social Media: The Experiences of Individuals with Severe Mental Illness Using YouTube” by John A. Naslund, Stuart W. Grande, Kelly A. Aschbrenner, and Glyn Elwyn in PLOS ONE, October 15 2014 doi:10.1371/journal.pone.0110171.

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