BLOG by Sarah Lines
What’s involved in creating one of our information resources? Well, how about 12 health professionals, one partner organisation, several patient reviewers and a designer. They all helped to create our latest resource: Find out about Your prostate, an Easy Read guide for men with learning disabilities.
We know that almost one in three adults over the age of 65 across England don’t have the literacy skills needed to understand health information – people with low literacy or learning disabilities, or people whose first language is not English.
Over 900,000 adults in England have learning disabilities and cancer accounts for 12-18 per cent of deaths in this population. As well as this about four out of every ten men over the age of 50 (40 per cent) and three out of four men in their 70s (75 per cent) have urinary symptoms that are caused by an enlarged prostate. Men of any age can be affected by prostatitis, but it’s most common in younger and middle aged men, typically between 30 and 50.
With these conditions affecting such a large proportion of the population, and since prostate cancer is the most common cancer in men, we believe no man should be unaware of the disease or unable to get information about it. So we decided to create a booklet to help these men understand the signs and symptoms of prostate disease and what to do if they spot anything unusual.
A great deal of work goes into all our information publications. All are written by trained health writers and reviewed by both health professionals and patients to ensure accuracy of information and easy of understanding. But with such a specialised audience, another level of work was needed.
The feedback helped us understand what men were learning from the images and what they found distracting or confusing
To make sure we understood and addressed their needs we worked with a number of specialist organisations, including Change and The Community Health and Learning Foundation. With their help we produced a first draft of the booklet which was reviewed by health professionals working with men over 40 with learning disabilities.
The feedback we received was not what we were expecting. The men noticed lots of details we hadn’t considered. In one of the early drafts many reviewers felt that the window in the bathroom needed to be smaller and higher up to give the man more privacy. Several reviewers also thought the nurse character was unclear and her uniform made her look like she worked in Asda!
While these comments can seem irrelevant on the surface this feedback helped us to understand what the men were learning from the images and what they found distracting or confusing. Their comments and suggestions helped us understand what worked for them and how we could get the message across.
After this feedback, the booklet was revised and tested a further two times, each time receiving comments from the target audience, to ensure the messages were as clear as possible. A huge amount of work went into creating this guide. An extensive team of professionals, patients, writers and designers helped develop this resource, which just goes to show, you should never judge a book by its cover.
The booklet was launched in February 2015. Since its launch the booklet has already been downloaded well over 200 times. We hope this guide will help even more men spot the signs and symptoms of prostate cancer and know what they can do to seek help. It is currently available to download for free on our website.