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Help us understand what people affected by prostate cancer want to know about end of life care - end of life care,End of life / Dying,survey

User
Posted 29 Oct 2015 at 15:39

Hi everyone,

This is Amy from the Health Information team at Prostate Cancer UK. I’m working on a new project to understand how we can best support men with advanced prostate cancer who are approaching the end of their lives, as well as their friends and family.

At the moment, Prostate Cancer UK doesn’t have very much specific support for people approaching the end of their life. We’re now developing information resources to help people understand what they can expect during this difficult time. We want to hear from people who have been there to make sure that we are able to answer all the most important questions people have.

I would really appreciate input from some of you here. We’re looking for people to take a short survey to tell us about their thoughts and experiences about end of life care and support. We would like to hear from men with advanced prostate cancer and their family and friends. We’d also like to hear from family and friends of men who have sadly died from prostate cancer.

You can take the survey here: https://www.surveymonkey.com/r/prostate_cancer_end_of_life

It should take about 10 minutes. Your answers will be anonymous. We will use your responses to help develop resources to better support people as they come to the end of their life, and their family and friends.

If you are part of any other forums or community groups and you think they might be interested in taking part, please share the survey with them.

If you have any questions or comments, post them up here or email me directly at amy.evans@prostatecanceruk.org

Thanks for your help,

Amy

Edited by member 29 Oct 2015 at 15:40  | Reason: Not specified

User
Posted 29 Oct 2015 at 16:58

Done !

 

Fiona.

User
Posted 29 Oct 2015 at 20:11

Are you aware of the EOL course that started this week from Sheffield Hallam University and St Lukes?
I'm currently engaged with it.

I'll also complete the survey.

ATB

Kevin

 

Edit - done

Edited by member 29 Oct 2015 at 20:17  | Reason: Not specified

User
Posted 30 Oct 2015 at 09:12

Thank you very much to everyone who has taken the survey so far.

 

Kevin - yes, we've signed up and it looks very good. Thanks so much for highlighting it.

 

Amy

User
Posted 30 Oct 2015 at 19:42
Amy

Done.

Kevin Hi, I was auto enrolled onto the course even though I found the technology almost unusable last time and even though there has never been any feedback. I much prefer the future learn technology platform which is very user friendly. I will participate from a distance this time.

Xx

Mo

User
Posted 30 Oct 2015 at 20:11
Originally Posted by: Online Community Member

Kevin Hi, I was auto enrolled onto the course even though I found the technology almost unusable last time and even though there has never been any feedback. I much prefer the future learn technology platform which is very user friendly. I will participate from a distance this time.

Xx

Mo

Hi Mo,

It's the same process as last time, Twitter and PebblePad.

It looks like PebblePad has had an upgrade and hopefully is more user friendly this time.

All the best

Kevin

User
Posted 30 Oct 2015 at 23:04
Hi Amy

sent you email

Web page down

carol

Edited by member 31 Oct 2015 at 11:34  | Reason: Not specified

User
Posted 31 Oct 2015 at 07:57

Just enrolled on the SHUOOC on end of life care mentioned by Mo and Kevin above. I was on the last one but iPad was not useable for pebble pad so as I was travelling it was difficult. However been on all morning and now iPad has the technology and it is much much easier to navigate. I am looking forward to it now. Over 1100 registered and I know the last one had over 50% completing badges so it was a success, just need to navigate the technology and for me now it's on IPad no problem.

User
Posted 02 Nov 2015 at 09:51

Hello,

Carol, thanks for letting me know that the survey was down.

It should be working now but please let me know if you have any problems with it.

https://www.surveymonkey.com/r/prostate_cancer_end_of_life

Thank you,

Amy

User
Posted 20 Nov 2015 at 14:35

Thanks so much to everyone who has taken part and shared their experiences - we've had over 200 responses. It's going to give us a really good idea about people's questions about dying from prostate cancer and how we can help to answer some of these. The survey is open until Monday so please do take part if you can.

https://www.surveymonkey.com/r/prostate_cancer_end_of_life

Thank you,

Amy

 
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