Left ventricular assist device (LVAD) patients may benefit from participating in a social support group; however, several factors may limit the availability of these communities. Alternatively, online social support communities may be more accessible for LVAD patients. No studies have examined patterns and reasons for health-related social media use among people with LVADs
An online survey of patients actively participating in LVAD social media groups was conducted using both multiple choice and open-ended questions.
Thirty-nine participants (65% male) completed the survey. Participants’ reasons for weekly engagement in online communities were to seek (69.2%) and offer (66.7%) advice, seek (43.6%) and share (71.8%) coping strategies, seek help (48.7%) or help others (64.1%) solve LVAD problems, and offer general social/emotional support (74.4%). Negative aspects from involvement in a virtual community included an excessive focus on fear/negativity (26.3%) and confusing or misleading information (21%). Most felt supported (100%) from involvement in the virtual community and believed that the information/advice received was helpful (94.6%) and accurate (100%). A significant minority (41.7%) reported that it was easier to get medical advice from Facebook groups than from their health care providers.
LVAD patients use social media to exchange information/advice, share coping strategies, and work with others to solve LVAD problems. Benefits to participating in these groups exist; however, the degree to which they are utilized for medical advice, instead of consulting a health care professional, highlights the importance of a trusting relationship between practitioners and LVAD patients.
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Boling, Bryan; Hart, Amanda; Okoli, Chizimuzo T.C.; Halcomb, Tamra; and El-Mallakh, Peggy
"Use of Social Media as a Virtual Community and Support Group by Left Ventricular Assist Device (LVAD) Patients,"
The VAD Journal:
Vol. 1, Article 18.
Available at: http://uknowledge.uky.edu/vad/vol1/iss1/18