Marfan syndrome (MS) is a connective tissue disorder that affects thousands of adolescents [Population Reference Bureau, 2013]. Some adolescent patients with MS may use social media to express their experiences and emotions, but little is known about what patients choose to share online. To investigate social media content related to Marfan syndrome we used search terms "Marfan syndrome" and "Marfans" on six different social media sites. The top five recent and popular posts for each site were collected and coded weekly for five weeks. Posts were excluded if they were reshared content or not in English. A codebook was developed using an iterative process to categorize posts and comments. Out of 300 posts collected 147 posts (49.0%) were included for evaluation. Categories of displayed content included personal pictures, memes and pictures featuring symptoms of MS (41.5%) and personal MS experiences (27.1% of posts). One quarter of the posts specifically mentioned a positive experience or how thankful the profile owner was for their life. A unique category of posts (13.7%) referenced Austin Carlile, a celebrity singer with MS, as a role model. Physicians and healthcare providers may consider using social media to understand common MS concerns and to place future health education materials.

BackgroundAdolescents and young adults frequently post depression symptom references on social media; previous studies show positive associations between depression posts and self-reported depression symptoms. Depression is common among young people and this population often experiences many barriers to mental health care. Thus, social media may be a new resource to identify, recruit, and intervene with young people at risk for depression.ObjectiveThe purpose of this pilot study was to test a social media intervention on Tumblr. We used social media to identify and recruit participants and to deliver the intervention of online depression resources.MethodsThis randomized pilot intervention identified Tumblr users age 15-23 who posted about depression using the search term “#depress”. Eligible participants were recruited via Tumblr messages; consented participants completed depression surveys and were then randomized to an intervention of online mental health resources delivered via a Tumblr message, while control participants did not receive resources. Postintervention online surveys assessed resource access and usefulness and control groups were asked whether they would have liked to receive resources. Analyses included t tests.ResultsA total of 25 participants met eligibility criteria. The mean age of the participants was 17.5 (SD 1.9) and 65% were female with average score on the Patient Health Questionnaire-9 of 17.5 (SD 5.9). Among the 11 intervention participants, 36% (4/11) reported accessing intervention resources and 64% (7/11) felt the intervention was acceptable. Among the 14 control participants, only 29% (4/14) of reported that receiving resources online would be acceptable (P=.02). Participants suggested anonymity and ease of use as important characteristics in an online depression resource.ConclusionsThe intervention was appropriately targeted to young people at risk for depression, and recruitment via Tumblr was feasible. Most participants in the intervention group felt the social media approach was acceptable, and about a third utilized the online resources. Participants who had not experienced the intervention were less likely to find it acceptable. Future studies should explore this approach in larger samples. Social media may be an appropriate platform for online depression interventions for young people.

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Social networking sites (SNSs) are immensely popular and allow for display of personal information, including references to depression. Evaluating displayed content on a SNS for research purposes requires a systematic approach and a precise data collection instrument. The purpose of this paper is to describe one approach to the development of a research codebook for depression so that others may develop and test their own codebooks for use in SNS research. The depression SNS research codebook was grounded in ethics, theory and clinical criteria. The key elements in the codebook developmental process included an iterative team approach to develop variables of interest and data collection sheet layout. Training protocols involve coding practice and reliability assessments. Interrater reliability remains a critical assessment tool. Codebook successes include consistently high interrater reliability. Challenges include time investment in coder training, SNS server changes, and social or cultural norms regarding public displays of mental health. We provide detailed information about a systematic approach to codebook development so that other researchers may use this structure to develop and test their own codebooks for use in SNS research. Future directions for the codebook include expanding areas of interest such as anxiety or other depression evaluation criteria, and expansion to other SNSs such as Twitter.