Prostate Cancer UK launches survey of end of life information needs

Categories: Community Engagement.

The charity has a large range of information about prostate cancer, including its diagnosis, treatment and side effects, but is keen to develop specific information for men who are dying from advanced prostate cancer, as well as their families and friends.

Amy Evans, from the charity’s Health Information Team, said: “Many men with prostate cancer have early prostate cancer that can be monitored or treated successfully. But sadly 10,000 men die from advanced prostate cancer each year. We want to know how we can best support these men and their friends and family.”

Although some of the general information that other organisations produce is relevant to men with prostate cancer, the charity believes men with prostate cancer would benefit from information that is tailored to their own needs.

The survey is open to men with advanced prostate cancer and their family and friends, as well as family and friends of men who have died from prostate cancer.

It covers a range of issues, including:

  • what men with prostate cancer, their family and friends want to know about dying
  • people’s main worries or concerns about end of life
  • practical matters such as financial support and preparing a will
  • when and how people would prefer to get information
  • preferred formats, such as online, printed or audio-visual.

There is also an opportunity for people to share their own experiences and pieces of advice.

Evans revealed: “We’ve had an incredible response so far, with over 200 people sharing their experiences. Some are sharing experiences of deaths that were dignified and peaceful, but others are sharing some very difficult experiences.

“The more survey responses we get, the more voices we hear. We’ll be able to understand more about the common questions we need to answer, as well as the diversity of experiences people have.”

Completing the survey

The survey is available to complete online.

The deadline for responses is 23 November 2015.

For further information, please email Prostate Cancer UK’s Health Information Team. The team would also love to hear from health and social care professionals who are involved in end of life care and support for men with prostate cancer, and who may be interested in providing feedback on the draft resource in 2016.

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