Patients With Severe Mental Illness Find Supportive Community On YouTube

MedicalResearch.com Interview with:

John A. Naslund, MPH – PhD Student at The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, Hanover, NH

Stuart W. Grande, PhD, MPA – Post–doctoral fellow at The Dartmouth Center for Health Care Delivery Science, Dartmouth College, Hanover, NH

Medical Research: What are the main findings of the study?

Naslund: In this study we explored whether people with severe mental illness such as schizophrenia, schizoaffective disorder, or bipolar disorder, use a popular social media website like YouTube to naturally provide and receive peer support. We found that people with severe mental illness use 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.  

Dr. Grande: They also sought to learn from the experiences of others about using medications and seeking mental health care.  YouTube appears to serve as a platform that helps these individuals to overcome fears associated with living with mental illness, and it also creates a sense of community among them.

Medical Research: What was most surprising about the results?

Naslund: 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. 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. There was a strong imperative for them to share their personal stories in order to help others with mental health concerns cope with their illness and to build an online community based on shared experience. 

Dr. Grande: We also saw that many individuals with severe mental illness immediately defended each other’s responses and comments on YouTube when “outsiders” made negative or inflammatory remarks. This seemed to reflect a sense of camaraderie, letting each other know they would be supported to speak their minds and share highly personal stories. 

Medical Research: What should clinicians and patients take away from your report

Naslund: We caution clinicians and patients that our research is exploratory, and therefore we cannot draw firm conclusions about the benefits or harms of naturally occurring peer support on YouTube. Nonetheless, we believe that it is important for clinicians to be aware that a social media website like YouTube can serve as a platform for naturally occurring peer support among their patients. Clinicians should also realize 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 even help to extend the reach of informal peer support activities between people with severe mental illness

Dr. Grande: For patients, YouTube and other social media websites may serve as a community for seeking support, validation, sharing experiences, or learning from others. It is also important to consider that while many patients may find these social media websites useful and supportive, they should not substitute the informal advice from peers on YouTube for professional advice. 

Medical Research: What recommendations do you have for future research as a result of this study?

Naslund: At this point, our work is exploratory, and it is 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. We believe that future research is necessary to better understand what motivates people with severe mental illness to openly share their experiences with others on YouTube, given the stigma and discrimination associated with mental illness.

Dr. Grande: We also want to learn whether YouTube might serve as a valuable resource that clinicians could point patients to, and whether it should become part of regular services recommended for this at-risk population group. 

Naslund: Our research team is currently working on extending this work to better understand the benefits of peer interactions on social media websites like YouTube among a wider group of people with severe mental illness, and to learn whether YouTube could be used to deliver services to this patient population.

Citation:

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

John A. Naslund, Stuart W. Grande, Kelly A. Aschbrenner, Glyn Elwyn
PLOS ONE
Published: October 15, 2014 DOI: 10.1371/journal.pone.0110171