Social networking: a lifeline for hospitalized teens

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Illustration by Matt Salik

Since its inception, more than two decades ago, the Internet continues to influence the way people work, play, and access information. What started out as a medium for academics and military personnel to share research and classified information, the Internet has become an ubiquitous array of invisible networks, connecting people from all corners of the globe on home computers, iPads, and smartphones.

But with the advent of social networking sites, such as Facebook, MySpace, and Twitter, the Internet is changing the way people interact with each other. For some, social networks are a platform for idle chatter. But for others, like 14-year-old Liam Jefferson, these sites play a vital role in their daily lives.

Maintaining a connection

In the summer of 2010, Jefferson was diagnosed with myelodysplasia, or preleukemia, an often chronic condition in which the bone marrow -- the area of the body where red cells, white cells, and platelets develop -- does not function properly. For the last six months, he has been in and out of The Hospital for Sick Children (SickKids) for treatment, including chemotherapy and a bone marrow transplant. With no other option than to stay at the hospital for days, and even weeks at a time, Jefferson began to feel isolated from the outside world.

“You’re kind of closed off from everyone and you can’t talk to anybody,” he says. “As a teenager you spend a lot of time reaching out and being social with everybody, and I think this is important because it really helps you figure out who you are and what you want to do later in life. That’s why I like Facebook ... for the social aspect.”

At first, hopping online at the hospital to access his Facebook account wasn’t so easy. “I couldn’t get an Internet connection in my room so we had to bring in our own router ... that’s the only way I could get online.”

Now, with an uninterrupted connection and his laptop within arm’s reach, Jefferson is able to regularly sign into Facebook to update his growing list of friends about his condition. However, opening up to his peers about his condition took some time for Jefferson to get comfortable with.

“I kind of kept my condition from a lot of my friends, but I’m starting to open up a bit more,” he says. “I remember wanting to keep it to my closest friends and family, but now when I log into Facebook, I check to see if any of my friends are online and if they are I will talk to them.”

Beyond the simple connection

At this point, access to the Internet, specifically social networks, is crucial to the quality of life of a teenage patient.

“They are lifelines. They allow teenagers who are patients to not feel that disconnected and this is paramount for them,” says Deborah Berlin-Romalis, a clinical social worker at SickKids. “It’s their connection with that world, and it allows them to stay posted, post pictures, and give updates to friends and family because the phone is just not enough now.”

Berlin-Romalis, who works in both the Blood and Marrow Transplant (BMT) Program and the Paediatric Brain Tumour Program at SickKids, says living day-to-day in a hospital is tough for anyone, no matter how old they are. But for adolescents, who are ready to launch themselves into young adulthood, it can be especially challenging.

“They’re starting to want more space from their parents, and they’re wanting to gravitate more towards their peers and do their own thing,” she says. “But this experience forces them to rely on their parents completely, and be cut off from a world that they’re really trying to enter and develop independence around.”

In addition to dealing with the separation from their peers and family, Berlin-Romalis says teenagers who are hospitalized for extended periods of time are forced to deal with the unknown.

“I think what makes it very hard for a teenager is that they get it. Five year olds really don’t get it – they know they’re sick, they know they have to be in the hospital, and they have to be poked and prodded,” she says. “But they don’t have that abstract understanding of the implications, like ‘Am I going to go to my graduation? Am I going to travel? Am I going to get married?’ Teenagers are thinking these things.”

From socializing to researching: the Internet is the information highway

In a recent study conducted by the Pew Internet and American Life Project and the California HealthCare Foundation, researchers discovered that blogging and online health discussions are the two most popular activities people living with a chronic disease engage in while surfing the Web.

“These resources allow an internet user to dive deeply into a health topic, using the internet as a communications tool, not simply an information vending machine,” writes Susannah Fox, associate director of digital strategy at Pew and coauthor of the study. “Living with a chronic disease is also associated, once someone is online, with a greater likelihood to access user-generated health content such as blog posts, hospital reviews, doctor reviews, and podcasts.”

For Jefferson, scouring the Web for information about his condition wasn’t something he engaged in right away. “I remember in the beginning, when the doctors would ask me if I had any questions for them, I was pretty quiet because I just wanted [the procedure] done,” he says. “But once I got into researching my condition, I began to think about it more and more and from that I started to get more involved by asking a lot of questions.”

The Pew study also reinforces the idea that keeping an online presence provides patients with a sense of belonging, especially when they engage in conversations with other patients in similar situations.

“Those who are online have a trump card. They have each other. This survey finds that having a chronic disease increases the probability that an internet user will share what they know and learn from their peers,” writes Fox. “They unearth nuggets of information. They blog. They participate in online discussions. And they just keep going.”

 

Joel Tiller
writer/editor
AboutKidsHealth

 

 

 3/4/2011

Fox S, Purcell K. Chronic Disease and the Internet. Pew Internet & American Life Project. 2010.






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