Deans' stroke musings: #Stroke survivors aged 18 to 55: How do you want your needs to be addressed? Tell researchers from @TheFlorey in this 20-30 min survey:

Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Thursday, May 10, 2018

#Stroke survivors aged 18 to 55: How do you want your needs to be addressed? Tell researchers from @TheFlorey in this 20-30 min survey:

Why is this even being asked? 100% recovery is the goal, nothing less. Stop with the tyranny of low expectations.

Addressing the Needs of Young Stroke Survivors

Participant Information and Consent Form

This questionnaire has been designed to collect information from young (aged 18-55) stroke survivors about their needs and how they would like their needs to be met. This information will help to guide the development of healthcare systems for young people with stroke.

The questionnaire has three sections:

Describe yourself
Identify your stroke-related needs
Tell us how you want your needs to be met

You can complete as little or as much of this questionnaire as you wish. It should take 20 to 30 minutes to complete. You can complete this questionnaire with help from someone who knows you well.

Participation in this research is voluntary. If you don’t wish to take part, you don’t have to. You can stop responding at any time and cancel your answers by exiting your browser. Please note that, once your answers are submitted on the final page of the survey, we cannot delete your information from our database because the survey is anonymous.

Some of the questions in this questionnaire may be personal in nature. If there is anything in the questionnaire that causes you any distress, please discuss your concerns with someone you trust—perhaps a family member, friend, or your General Practitioner. You can also visit www.beyondblue.org.au or www.strokefoundation.org.au for further information and support.

StrokeLine provides telephone advice about living with stroke and stroke support services in Australia: 1 800 787 653

How will data be used?

Researchers from The Florey Institute in Melbourne, Australia will analyse the data to describe the ways young stroke survivors want their needs to be met.
The results of this study may be published in a scientific journal, and a report will be written for The Florey’s website and other related sites.
You will not be identified in any publications that result from this study.
There will be no direct benefit to you from participation in this research.

How will data be stored?

All data and project records will be stored for seven years on a data storage server in the University of Melbourne Data Centre that can only be accessed by authorised staff.

Study approval

This questionnaire has been approved by the Austin Health Human Research Ethics Committee (Project ID: HREC/18/Austin/86).

Further information

Please contact Dr Julie Bernhardt at The Florey Institute of Neuroscience and Mental Health: 03 9035 7072 julie.bernhardt@florey.edu.au

Complaints contact person

Name: Complaints Officer
Telephone: (03) 9496 4090 or (03) 9496 3248
Email: ethics@austin.org.au

To give your consent to participate and proceed to the questionnaire, please click 'Agree' below. I couldn't get the button link to copy over.

I have read and understood this information and I wish to complete the questionnaire.