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Teen Info on Cancer: a new website for teenagers

Jennifer Childs
RGN
Senior Information Development Nurse
CancerBACUP
3 Bath Place
Rivington Street
London

Every day, six teenagers in the UK are given the news that they have cancer. It's a diagnosis that would leave any adult struggling to cope with the shock and uncertainty, let alone young people at such a sensitive stage in their lives. At a very young age they have to face the trauma of cancer, the side-effects of treatment and, in many cases, isolation from their peers. For their family and friends it's a distressing and, at times, heartbreaking experience. Meeting the needs of all involved is a challenge currently facing health professionals in the UK.

Helping people cope
For anyone affected by cancer, impartial, high-quality information is vital. It helps people to cope. Studies have shown that it assists knowledge and understanding, empowers people to make decisions about their treatment, and encourages them to be active participants in their own care. The reality of this is demonstrated by the huge demand for CancerBACUP's information and support services. The growth of our freephone helpline, website, booklets and factsheets has made us the largest provider of specialist cancer information in Europe.  

Involving teenagers
Two years ago, CancerBACUP began to investigate the information needs of teenagers and young people with cancer. We established a steering group of specialist cancer doctors and nurses, teachers, teenage cancer patients, and other cancer charities such as the Teenage Cancer Trust (TCT), CLIC and Macmillan. Research carried out by the group into the information available for teenagers and young people identified a huge gap - there was more information provision for young children with cancer than for the older age group. The steering group decided to address the need by establishing an information resource specifically aimed at the growing numbers of teenagers and young people diagnosed with cancer - currently more than 2,200 per year.
It was a timely decision. Research carried out by the TCT at its annual conference in 2004 showed that 45% of participants felt that information was not designed for their own age group, and 37% felt they were only involved in making decisions about their treatment "some of the time" or "not much of the time". Further research by the Healthcare Commission also found that cancer information provision for teenagers was poor and not targeted towards their needs. When they surveyed young patients, only 57% reported that doctors gave them information about their care and treatment in a way they could understand. Of those young patients, 47% said they were not involved in decisions as much as they wanted to be. In addition, 31% of parents said they wanted to be more involved in decisions about the care and treatment of their child in hospital.
Guided by the steering group, CancerBACUP undertook the task of providing a new information resource for teenagers and young people with cancer. The group's research had shown that internet usage continues to grow rapidly among teenagers in particular, and has now become their primary media channel (the average teenager spends up to 16.7 hours a week online, compared with 13.6 hours a week watching television and 12 hours listening to the radio.). CancerBACUP then gained substantial funding from city traders ICAP to build a new website complementing our existing services, specifically designed for a younger audience.

Researching the issues
Teenagers were involved in the development of the site from the outset - from its name to the way it looked and the issues they wanted it to cover. At the TCT's annual conference, CancerBACUP set about establishing what these issues were. The findings of a questionnaire showed that teenagers supported the idea of a website and that they wanted a wide range of information. Their needs ranged from the more standard information about diagnostic tests, cancer treatments, complementary therapies, and so on, to information about fertility issues, disruption to schooling, appearance, relationships with parents and partners, activities between treatments, careers advice, how to cope with treatment ending and how to make contact with other teenagers in a similar situation. The steering group also decided that in future the website should include advice for parents about any family issues that might arise, such as coping with their own emotions and issues of consent.

Developing the website
Throughout the development of the site we worked closely with Lucy Ashman, CancerBACUP's Online Development Manager. She said: "We wanted it to be bright, colourful and engaging, and we've tried to present the information in a direct, honest way."
"We've designed it so the user doesn't get too much information too soon. For example, the first page of each cancer type gives you brief, basic facts, which can lead you on to more detailed, and then very detailed, information on subjects such as treatment regimes."
As with all CancerBACUP's booklets, factsheets and website content, all the information on the TIC site is high quality, independent and peer reviewed. Chief Executive Joanne Rule said: "We're very proud to launch the new TIC website. We've developed it in conjunction with health professionals, other cancer charities and teenagers themselves, and hope it proves to be a valuable resource for teenagers and young people with cancer."
Teen Info on Cancer was launched on 11 May at www.click4tic.org.uk

Resources
Teenage Information on Cancer
W:www.click4tic.org.uk
CancerBACUP T:0808 800 1234
W:www.cancer bacup.org.uk
Teenage Cancer Trust
W:www.teenagecancertrust.org
CLIC
W:www.clic.org.uk