Younger people with bowel cancer: a guide for the under 50s – Bowel Cancer UK
Most people with bowel cancer are diagnosed when they are over the age of 50. But around 2,100 people under 50 are diagnosed each year in the UK. At Bowel Cancer UK, we hear from younger people who find it hard to get information and support that is relevant to them and that they can identify with. Our research shows that younger people aren’t receiving the information they need on issues such as fertility, genetic risk, the impact on young children, family and work life.
The aim of this booklet is to fill the gaps in the information that younger people receive when they are diagnosed with bowel cancer and to represent younger people in the images and personal experience quotes.
The booklet gives an introduction to how bowel cancer can affect the body, emotions, relationships and everyday life, without duplicating the information resources that already exist. It signposts to other sources of information and support where appropriate. It was written with the help of people diagnosed with bowel cancer under the age of 50 and with input from health professionals.
This case study has been shared by Debbie Clayton, Information Specialist, Bowel Cancer UK .
Date of publication: April 2015
Resource format: A5 booklet. Also available in PDF format here: http://www.bowelcanceruk.org.uk/under50s
Quality marks: Information Standard
Background to the resource
The booklet is for people diagnosed with bowel cancer under the age of 50. We hope the booklet will also be helpful to family and friends.
It was produced as a result of Bowel Cancer UK’s Never Too Young campaign, which showed:
- Fewer than one in three women and one in two men were offered advice on fertility.
- 41% of people said most of the information they received was targeted at older people.
- Only 26% of women and 44% of men were happy with the levels of support they received.
- 66% of people said they preferred to receive information through patient information leaflets.
We also conducted telephone interviews, online questionnaires and a focus group with people diagnosed with bowel cancer under the age of 50. The results showed that most people did not get the information they needed after diagnosis, they did not like the images of older people in existing publications and they wanted information on sex and relationships, financial matters, work life, impact on children, family history and fertility.
At the start of the project, an information mapping exercise was carried out to find out what other resources exist for younger people with bowel cancer. The aim of the booklet was to fill any information gaps, whilst signposting to existing sources of high quality information and support.
We ensured we met the Information Standard criteria by identifying the best available evidence and guidelines. We also involved a large number of health professionals in reviewing the booklet. This was because we were covering lots of topics so some reviewers only looked at the content that was relevant to their area of work, whereas others reviewed the entire booklet.
Accessibility was an important consideration for us. We used plain language, clear font, an A-Z of medical words, explanations of words within the main content and signposts to further information. Colour, photography and clear headings were used to break up the text and aid navigation.
Users were involved in the project right from the start. We surveyed and interviewed a small group of people who had been diagnosed with bowel cancer under the age of 50. We asked them about their experiences of accessing information and what they would want from a new resource. Most of the people we spoke to said they didn’t get all of the information they wanted when they were diagnosed. They didn’t like the images of older people in existing resources and they wanted information that was specific to bowel cancer rather than cancer in general. Some people didn’t want too much detail to start with but they wanted to know what information was available and how to get it. The most popular format was a printed booklet or leaflet, followed by an online resource.
We used this feedback together with the results of a large survey that the charity had previously done as part of our Never Too Young campaign. There were several common themes in the responses, which pointed us in the direction of a printed booklet to be handed to people at the point of diagnosis by their health professional. The content would focus on topics that younger people find it hard to get information on, such as fertility, genetic risk, the impact on young children, family and work life. The rest of the booklet would introduce other topics, such as treatment options and the late effects of treatment, but would signpost to other existing sources of information for more detail.
A group of users volunteered to review the booklet. They commented on the initial plan as well as the first and final drafts. We also invited twelve people to a focus group to discuss their experiences and to look at the draft booklet. The group consisted of people who had been diagnosed with bowel cancer, their partners and friends. We decided to print a few copies of the draft booklet so the group could physically turn the pages and judge the look and feel of it. They gave us some great feedback on the content and the title as well as how we should disseminate the booklet. We arranged for a photographer to come along at the end of the session to take some photos for inclusion in the booklet. The reviewers and the focus group participants were also invited to contribute their own personal stories.
Our health professional reviewers helped us to identify ways of getting the booklet to our target audience at the right time. The aim was for health professionals to give the booklet to their patients at the point of diagnosis or soon after. We sent a mailing to a group of Colorectal CNSs and Stoma Care Nurses from our database. We also contacted editors of health professional newsletters and journals. In order to reach people with bowel cancer directly, we promoted the booklet using social media and by contacting other charities and organisations.
Following the launch we’ve had a great response from the direct mailing, from our health professional reviewers and from Twitter and Facebook.
We are gathering feedback from health professionals and from users with separate surveys. Printed copies of the survey are inserted into the booklets with a freepost reply envelope where possible. We also have an online version for people who download the booklet from our website or who prefer to reply using this method.
The surveys ask people if they would be happy for us to contact them again in a few months time. We plan to carry out telephone interviews with a sample of the respondents to find out more about how they’ve used the booklet.
Some of the people who helped to review the booklet were not well and, although they were keen to take part, their health didn’t always allow them to. We involved more people at the start of the process to ensure we had enough reviewers to look at the final draft. Everyone who took part at any stage was emailed a copy of the final booklet and thanked for their contribution.
We would have liked to include more photos of the people who contributed their personal stories. It was difficult to get high quality images of everyone that were suitable for print. We also had more photos of women than men but we needed to represent both genders equally as well as all ages across the 20-50 age range.
Budget is a common problem and we were lucky that people were often willing to donate their time and expertise.
We only launched the booklet a short time ago but we’ve already had a lot of orders and some encouraging feedback.
Health professionals’ comments:
“This is excellent. This will be a superb booklet for our young patients suffering from bowel cancer. I will definitely ensure that my colleagues are made aware.”
“it looks great and is a really useful addition to the information available to patients affected by bowel cancer.”
“Congratulations on such a clearly written and informative booklet.”
“Excellent booklet. I wish it had been around when my daughter was diagnosed. She felt so isolated.”
“Really clear and accessible. Would have loved to have had this to read after I was diagnosed.”
- Keep in mind the purpose and limitations of a new information resource. Printed information should not stand alone – it works best when it’s used alongside other activities such as campaigning, policy work or service provision.
- Try not to rely on your usual contacts when you’re looking for reviewers. We found that people were really keen to help and were prepared to travel long distances and give up their time.
- Focus groups or workshops are good for gathering feedback on your resource. If you can share a few sample copies of the draft resource in their final format (booklet, DVD etc), people will find it easier to comment and you’ll get more comprehensive feedback.
- Be realistic about how long the whole process takes and set aside extra time to allow for any unexpected delays.