Social media sites let chronically ill teens be teens

By medwireNews Reporters

Most chronically ill teenage patients do not disclose their personal health information on social media websites such as Facebook, research shows.

Despite widespread use of social media, including many hours on the internet, these websites are not viewed as a place to discuss their diagnosis or treatment.

Teenage patients, according to two researchers, do not define themselves as patients and are not interested in finding peers with a similar diagnosis.

"Facebook is the most popular internet site for the majority," explain Maja van der Velden (University of Oslo, Norway) and Khaled El Emam (University of Ottawa, Canada) in the Journal of American Medical Informatics Association. "It fulfills an important need: it provides the patients a place to be regular teenagers. It enables them to stay up-to-date about their social life, like any other regular teenager."

The conclusions are based on an analysis of interviews with 20 hospital patients aged 12 to 18 years old.

The patients were recruited from the Children's Hospital of Eastern Ontario (CHEO), a large, tertiary-care pediatric institution in Ottawa, Canada.

While at CHEO, patients are offered access to a variety of technologies for information, communication, and entertainment, as well as offered patient accounts to a closed social network (Upopolis) for young patients in Canada.

All the patients brought additional technologies while staying at the hospital, including their laptops and cell phones. All had a Facebook account, and some used Twitter and YouTube.

On the whole, patients did not look for information about their diagnosis, medications, or treatment, and did not seek out other people with a similar diagnosis. In addition, they did not participate in social media sites maintained by patient organizations.

Facebook, with its private messaging system and status updates, is the source of online communication for the majority of the patients.

In terms of self-definition, the teenage patients present themselves on Facebook as regular teenagers.

"They do not write public status updates about their stays at CHEO or the treatments they receive," write van der Velden and El Emam.

The patients also employed a variety of methods to maintain their privacy about their illness, including changing privacy settings and not disclosing health information in a public status update.

They also used electronic media for various groups of people, using Facebook for their friends and the hospital's social media site for building a new social network as a patient.

"The majority of the teens identify the different needs Facebook and Upopolis fulfill," write the researchers.

Interestingly, the study also found that most teenagers do not use email.

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