Study: People With Severe Mental Illness Find Community, Support On YouTube

Nov 12, 2014

Screenshot from a YouTube video narrative.

Users of the online video platform YouTube reportedly post some 100 hours of video content each minute.

Much of that content consists of very basic video narratives - people sharing their own experiences with the world. Researchers at Dartmouth have been looking at whether there are benefits when people with severe mental illness who post their narratives on YouTube.

John Naslund is a PhD student in health policy at The Dartmouth Institute for Health Policy & Clinical Practice, and lead author of the research article published in the journal PLOS ONE.

The article notes that people with severe mental illness appear to share their personal stories online more often than people without mental illness. Yet there’s a cultural perception that mental illness is largely hidden and not discussed as it perhaps should be. Do we know why individuals are using these platforms?

What we saw was that this was a form of naturally occurring peer support. We know in people with severe mental illness, peer support is something that's known to be highly beneficial. When people have a highly stigmatized illness, they can feel highly isolated and alone with their symptoms and their experiences. Just being able to find a wider community is something that's not only highly beneficial but something that many of these individuals look for. And I think social media is a place where they can find that.

What's particularly interesting is the choice of YouTube as the place to look for that community. It's a video site; it's not like Facebook or Twitter, where text is the primary medium. And there are many sites where you can stay anonymous. But you're putting yourself right out there on YouTube - people can see or hear you.

That's an excellent point. With YouTube, there's actually different degrees of disclosure. I think that's a way for people to decide what level of risk they feel comfortable with, with sharing their personal illness stories. You have people who post videos and they're fully open, but you also have people who comment, who maybe use a username and then don't have to share those types of personal details but can still obtain some of the similar benefits and interact with others with similar experiences. There's a range of how many details you can choose to share.

The perception of YouTube commenters as unusually negative and hostile compared to other social media sites.

I'm really glad you raised that point. When we were working on putting together the study, my colleagues and I, several of our advisors were challenging us, being like, you really need to look for the risks, you really need to consider the risks. The vast majority of the comments were highly positive, which was really surprising to us. We coded over 3,000 comments, and only about 5 percent were negative. And what was most surprising is that, even when there were negative comments, other posters would come to the defense of that person, saying, you don't know anything about his experiences, stay out of here, keep your negative comments to yourself. We hypothesize that's probably because these are personal stories - you sort of have to be looking for these types of videos, and this type of content, to find it. We believe that screens out a lot of that nastiness that happens on YouTube.

Going forward, what questions would you hope to answer with this kind of research and this platform?

What was so fascinating is that this is just naturally occurring, this is just happening out there. Understanding the motivation, as to why individuals are doing that, is one of our next steps that we're really keen to pursue. We're actually trying to interview some of the posters and maybe some of the people who post comments to find out why they find it beneficial, what they hope to get out of it.

And then trying to look down in the future is how could this be combined with formal clinical services - because I think there are benefits here that might not be offered in traditional systems, and trying to find a way to pair the two.