Young people who spend a lot of time in hospital are benefiting from a specially designed social network, writes ORLA TINSLEY
A PROJECT THAT created and set up an online community for seriously ill children with cancer won top prize at the “Astellas Changing Tomorrow” awards last week. The project, run by the Centre for Health Informatics at Trinity College Dublin, was implemented on the St John’s Ward in the Children’s Cancer Unit in Our Lady’s Hospital Crumlin in 2007.
The project, called Solas, allows children to access an interactive community through specially assigned laptops when they are in hospital undergoing chemotherapy, and it has revolutionised their hospital experience.
The project manager and winner Paula Hicks said she wanted to reduce the disconnection felt by children with chronic illness who have to spend long periods of time in hospital by creating a safe online community for them.
“We started as far back as 2000 looking at a project called Star Bite World in the US and made the initial set-up in hospital schoolrooms,” she says. The schoolrooms provided a base for the start-up of the virtual environment because there was security and teachers there.
However, Hicks was frustrated at missing the core group of children such as those with cancer or cystic fibrosis who were immuno-suppressed and could not go to the schoolroom in case their health was compromised.
“Initially, we aimed the programme at eight- to 12-year-olds, but you can never tell what age group is going to be in at any given time,” she says. The age group was then broadened to as young as four and as old as 18. The next hurdle was the difficulties with cross-infection.
“Within St John’s Ward a lot of children are acutely immuno-suppressed, so we had to provide hardware in that environment that was permitted by infection control and easily wiped down,” she says.
The main issues she has found in children from the ages of eight to 12 in that environment were high levels of loneliness, loss of contact with friends and the fact friends do not always understand what’s going on with them.
“We try to maintain a normal environment and have created our own social-networking hub which means there are no issues with security either.”
Karen O’Reilly (18) was diagnosed with acute myeloid leukaemia, which she describes as “basically cancer in my blood cells”, at 16.
“I was treated on St John’s Ward really intensely for five months,” she says. While she was there she was unable to visit the schoolroom because her chemotherapy left her immuno-suppressed.
“I had to put my education on hold and it was really hard because we were high risk and couldn’t attend school. Solas was amazing because the days all rolled in together and it was really easy to chat and text on when I was too weak to pick up my phone,” she says.
The Celbridge native says it kept her in touch with friends from home and other patients she made friends with. “Some people only came in and out once a month for chemotherapy, but I was always getting infections – the unlucky one!”
While it made it harder to be in there alone, her experience has now inspired her to study medicine in college. “Before I was sick, I was shy and now I’m much more outgoing and I know what I want to do with my life,” says the Leaving Cert student.
The core aspects of Solas are communication, creativity and education, says Hicks. Users in the hospital community have their own blog, live chat and e-mail, and also a programme for composing music and an art and funzone.
“We created our social network way before Facebook,” Hicks jokes. For security reasons, other social networking sites can’t be accessed on Solas. “We have to keep it a secure environment,” she says. The web is accessed through a DSL line set up in the hospital specifically for it.
Nurse practitioner Lorna Storey says that the long days waiting for chemotherapy on St John’s Ward can be tough. “There is a facilitator to set up the computer and the children always love seeing her come along the corridor, small children right through to adolescents,” she says.
“They can dip in and out of it at any time, which is great because they can be so exhausted and find it hard to concentrate.”
Both Storey and Hicks say a key aspect to security and safety is the facilitator. “It’s great for us because it doesn’t break code of care, is safe and we know there is someone looking after it.”
Hicks says the money from this award will be used to roll out Solas to the ward for children with cystic fibrosis in Crumlin. While this stage of Solas was targeted specifically for children with cancer, the beauty of the programme is its ability to be modified to suit whomever needs it.
“Even the name Solas is so apt, it brings such light to everyone,” says O’Reilly. She says it was particularly brilliant when she was sharing a room. “I was totally wiped out and what I ate in one day normally I ate in the entire four months there. Days were really hard and sometimes I was sharing with two- or three-year-olds, so Solas kept me sane.”
