Cancer patients and their caregivers are increasingly using social media as a platform to share cancer experiences, connect with support, and exchange cancer-related information. Yet, little is known about the nature and scientific accuracy of cancer-related information exchanged on social media. We conducted a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with acute lymphoblastic leukemia (N = 15,852 posts) and extracted all exchanges of medically-oriented cancer information. We systematically coded for themes in the nature of cancer-related information exchanged on personal Facebook Pages and two oncology experts independently evaluated the scientific accuracy of each post. Of the 15,852 total posts, 171 posts contained medically-oriented cancer information. The most frequent type of cancer information exchanged was information related to treatment protocols and health services use (35%) followed by information related to side effects and late effects (26%), medication (16%), medical caregiving strategies (13%), alternative and complementary therapies (8%), and other (2%). Overall, 67% of all cancer information exchanged was deemed medically/scientifically accurate, 19% was not medically/scientifically accurate, and 14% described unproven treatment modalities. These findings highlight the potential utility of social media as a cancer-related resource, but also indicate that providers should focus on recommending reliable, evidence-based sources to patients and caregivers.
There is a need for continued efforts by librarians and health care professionals to train seekers of online health information to select websites using established guidelines and quality criteria.
Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support.
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