Designed to make young people feel at home – interview with Tom Skogsberg, teenage panel

Cancer treatment often puts a great physical strain on the patient. But suffering from cancer can also be psychologically distressing. Some feel very low or depressed. U-CARE aims to give young patients the opportunity to get help in a simple manner that they themselves can control. U-CARE is currently preparing a web-based programme for treatment.

Adolescents who have or have had cancer are one of the groups that the U-CARE web Portal seeks to address. Tom Skogsberg is one of these youngsters. He has been a member of the teenage panel who have helped to advise U-CARE on how best to adapt the web portal so that it meets the wants and needs of young patients.

“I was contacted by someone from the hospital who asked if I wanted to be part of the panel. It was something I wanted to do. It felt right to do what one can. And I think we got a good result.”

The teenage panel helped U-CARE to make the Portal more interesting and easier to navigate in for young people.

Tom explains: “It’s important for the young people who look at the Portal to be able to quickly feel that it’s something for them. If it doesn’t feel right straight away, or if it’s difficult to find what you’re searching for, you probably won’t go back again. It also has to be in a language that young people understand. You never get a second chance to make a first impression.”

Users decide for themselves

The U-CARE-portal offers help in several ways, including the possibility of accessing cognitive behavioural therapy (CBT) via the Portal. This includes regular contact with a therapist. There is also a lot of information about how and why patients feel psychologically distressed, and what they can do to feel better. There is furthermore a live chat function that patients who have logged on to the Portal can use to chat with one another.

“If you can see that there are others in the same situation as yourself,” says Tom, “it can help you feel better. There’s some good information available through the Portal, and you can chat with others about how you’re feeling. For example, some people have visible scars after an operation and don’t want to go out and meet other people. It can be a big help to know that you’re not alone. It can make it easier if there are others to talk to about such feelings.”

There is also a function that allows users to send in their own questions to various healthcare professionals, such as hospital social workers, psychologists and paediatricians, if they want to.

“If you have a simple question, it may be that you don’t want to ask anyone at the hospital. When you’re very young, it can take a lot of courage to contact the health service if you feel anxious or depressed. You may not want anyone else to know that you’re seeking help. If you google online for information, you don’t know whether the information you find is correct or not. So it’s brilliant that there’s a web Portal where there’s information that’s written by professionals and where you can ask questions easily,” says Tom Skogsberg.

No complicated information to read

One of the factors that makes the requirements the Portal has to fulfil rather special is that the target group includes teenagers. Accordingly, one of the teenage panel’s most important tasks was to look at the Portal’s appearance and content from a different perspective from that of the doctors, hospital social workers, psychologists and researchers who had been involved in developing it.

Attractive, simple and easy to use

But even more important than the content is the presentation:

“Young people do a lot of surfing on the Net. They perhaps judge websites more by how they look than adults do. If it looks like a typical hospital website, there’s a big risk that many won’t think it’s anything for them,” Tom explains.

The teenage panel came up with suggestions for images, colour schemes and functions for the Portal. They also pointed out that it would be a good idea to have a function which allowed the users who were logged on to see whether anyone else was logged on at the same time. The panel thought that was important for the chat function.

“Naturally, not everyone is logged on at the same time as you are. If you can see that others are logged on you know that you can actually get an answer if you ask a question in the chat room. That makes the chat room a valuable part of the Portal. If you’ve asked a question but not got an answer you probably won’t want to use the chat function again.”

Tom Skogsberg believes that the U-CARE-portal can provide valuable support for adolescents who are diagnosed with cancer. Thanks to the work of the teenage panel, he thinks that the Portal’s content, appearance and mode of presentation are now tailored to young people’s needs.

“U-CARE has done a good job,” says Tom. “I hope that many young people who suffer from cancer will get the opportunity to use the Portal.”

Picture of Tom Skogsberg