Location
Philadelphia
Start Date
11-5-2016 1:00 PM
Description
Objectives: Little is known about the role of social media and YouTube, in people coping with serious medical diagnoses (Bane et al., 2005). Long QT Syndrome (LQTS) is an inherited cardiac condition affecting 1:2500 people that predisposes them to life threatening arrhythmias, and is often diagnosed in childhood. Few studies address the psychosocial impact of LQTS (Lane et al., 2009), though dietary, physical, and social restrictions are required (Chattha & Zelenietz, 2011), and lifelong medication and implantable devices may be needed. This study investigates what individuals share with others about LQTS via YouTube. Information may help professionals effectively use or moderate the effects of social media for patients, and identify areas for intervention for those with LQTS. Methods: Inclusion: YouTube videos from 2008 to 2013; individuals in videos have personal experience with LQTS. Exclusion: Videos without verbal or written narratives were excluded. Procedure: Of 1790 videos in a “long qt syndrome†YouTube search, 35 met inclusion criteria. Excluded videos were professionally filmed hospital testimonials, medical lectures, and videographies. LQTS patients in the included videos represent ages across the lifespan. Qualitative analysis was used to interpret the videos. Three coders used open and axial coding to determine key themes in data and achieve saturation. Grounded theory was used to explain results in a theoretical and evidence-based context. Results: Findings revealed individuals’ thoughts, feelings, and behaviors about biopsychosocial aspects of LQTS. Themes include experiences with initial diagnosis, survival stories, treatment, misdiagnoses, and mistreatment. Conclusions: YouTube offers cost-effective means to learn about patient populations’ psychological needs, experiences, and useful sources of information. Specific to LQTS, YouTube may provide an understanding of informal information communicated among patients and families that may impact questions asked of their physicians and psychosocial aspects of the condition.
Information Shared on YouTube by Individuals Affected by Long QT Syndrome: A Qualitative Study
Philadelphia
Objectives: Little is known about the role of social media and YouTube, in people coping with serious medical diagnoses (Bane et al., 2005). Long QT Syndrome (LQTS) is an inherited cardiac condition affecting 1:2500 people that predisposes them to life threatening arrhythmias, and is often diagnosed in childhood. Few studies address the psychosocial impact of LQTS (Lane et al., 2009), though dietary, physical, and social restrictions are required (Chattha & Zelenietz, 2011), and lifelong medication and implantable devices may be needed. This study investigates what individuals share with others about LQTS via YouTube. Information may help professionals effectively use or moderate the effects of social media for patients, and identify areas for intervention for those with LQTS. Methods: Inclusion: YouTube videos from 2008 to 2013; individuals in videos have personal experience with LQTS. Exclusion: Videos without verbal or written narratives were excluded. Procedure: Of 1790 videos in a “long qt syndrome†YouTube search, 35 met inclusion criteria. Excluded videos were professionally filmed hospital testimonials, medical lectures, and videographies. LQTS patients in the included videos represent ages across the lifespan. Qualitative analysis was used to interpret the videos. Three coders used open and axial coding to determine key themes in data and achieve saturation. Grounded theory was used to explain results in a theoretical and evidence-based context. Results: Findings revealed individuals’ thoughts, feelings, and behaviors about biopsychosocial aspects of LQTS. Themes include experiences with initial diagnosis, survival stories, treatment, misdiagnoses, and mistreatment. Conclusions: YouTube offers cost-effective means to learn about patient populations’ psychological needs, experiences, and useful sources of information. Specific to LQTS, YouTube may provide an understanding of informal information communicated among patients and families that may impact questions asked of their physicians and psychosocial aspects of the condition.