An online lifeline A new social networking site connects kids to their school, friends and family from the comfort of their hospital beds
Globe and Mail July 15, 2008 at 8:36 AM EDT
It's a room that could easily be mistaken for a daycare centre or children's play area. Colourful toys lay scattered across most surfaces, a television blares noisy cartoons, and child-sized tables and chairs dot the room.
But here, the normally heartwarming signs of youthful exuberance are deceptive. Instead of running, jumping and laughing with boundless energy, many of the children sit listlessly with needles in their arms as they receive chemotherapy treatment. A child-sized examination table and intravenous pole are available to play with to help ease fears of strange medical equipment. One toddler who has lost all of his hair from cancer therapy moves unsteadily through the room, still too young to be sure of his footsteps.
The heartbreaking scene is a daily reality at McMaster Children's Hospital in Hamilton, Ont., where kids of all ages are treated for serious diseases that range from hemophilia to aggressive cancers.
While their friends are out revelling in the sunshine or sitting down for meals at the family dinner table, these children are confined to hospital beds, sometimes for extended periods, and are isolated from their comforting networks of family and friends.
It is that isolation that inspired Basile Papaevangelou, a former chief executive officer at an aerospace firm, to take action to reconnect hospitalized children with the outside world. Mr. Papaevangelou, who lives in Oakville, Ont., was drawn to the cause after his then-teenaged daughter, Christina, fell critically ill with toxic shock syndrome in 2002, and coincidentally saw her best friend Katy McDonald diagnosed with terminal cancer a short time later.
After watching Christina suffer, and hearing about how isolated Katy felt at the hospital before her death, Mr. Papaevangelou decided to look for a way to help kids in hospital cope with being cut off from the world they know and care about. To accomplish his mission, Mr. Papaevangelou and Christina, now 22, created in 2004 the Kids Health Links Foundation, a charitable organization whose purpose is to bring the capabilities of the Internet to children's hospital wards to ease their fear, anxiety and feelings of isolation.
Their efforts led to the creation of Upopolis, a new social networking site designed exclusively for young people in hospital. It allows children to instant message with friends outside, to receive homework assignments remotely, play games and go online in a safe and controlled network from their hospital beds. Telus Corp. developed the network for the Kids Health Links Foundation and will provide technical support on a continuing basis, and Toshiba of Canada Ltd. is donating laptops so young people will have easy access to the network.
"[The network] gives them a very important and critical place to stay connected to their worlds, to allow them a channel to their friends, family [and] teachers while they're going through some of the most significant and challenging moments of their lives," said Joe Natale, president of Telus Business Solutions.
Although computers and the Internet are ubiquitous across Canada, bringing that technology into a hospital setting with children involved is not an easy task.
Online predators, inappropriate websites and other risks, in addition to limited resources, mean that few, if any, organizations would be willing to provide unlimited Internet access to hospitalized children.
The creation of a social networking site available only to hospitalized children and those they invite to join, as well as hospital administrators and family members, ensures the young patients are not at risk when they go online. Upopolis was officially launched at McMaster Children's Hospital last December and has been a major hit with the children who have used it so far, according to Paola Di Lalla, a certified child life specialist at the hospital.
In addition to the messaging, surfing and games it provides, the network offers specialized functions to help children learn about their condition and what to expect while staying in the hospital.
"Kids love it," said Ms. Di Lalla, who works with hospitalized children to help them cope with the experience. "It just gives them a bit of control over gaining knowledge about what's happening in hospital and how they can help themselves."
Curtis Rodrigue, 14, was one of the first young people to take advantage of Upopolis while in the hospital. Curtis was diagnosed with Hodgkin's lymphoma earlier this year and has stayed in the hospital several times for chemotherapy. Having access to the Internet and a social networking program that allowed him to keep in touch with his brothers and friends helped take his mind off the hospital experience and feel a connection with the outside world.
"It's great," said Curtis, who recently finished chemotherapy and is starting radiation treatment. "I think [not having Upopolis] would make the time go by really slow, especially if you're in here for a long time. You wouldn't have anything to do. If you have this it's easier to stay in touch with people and do games and stuff like that."
The social networking system has shown so much promise that more than a dozen Canadian hospitals have indicated they would like to bring it into their organization, according to Mr. Papaevangelou.
Upopolis is scheduled to be up and running in two more children's hospitals by the end of the year - one in Ontario, and another in Western Canada. A hospital in Atlantic Canada will probably follow shortly after.
Once the network is operating at other sites, children in hospitals across the country will be able to connect using the secure Upopolis network and forge new ties with peers going through similar experiences.
"I get goosebumps every millisecond when I'm working this project," Mr. Papaevangelou said. "It enhances the lives and improves the quality of life of hospitalized children."