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:

1. Describe yourself
2. Identify your stroke-related needs
3. 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 have read and understood this information and I wish to complete the questionnaire.

Tick the box if you need help with an area listed below.

Is anything missing from this list? Please enter your Other need(s):

On the following pages, we will list the needs you selected in the previous section and then ask how you would like these needs to be met. You can use the 'Back' button to update your selections if required. 

For each question, please select from the list one, two, or three ways that you would like your needs to be met.

List of choices:

1. Fact sheet with graphics and easy-to-read information
2. List of tips from other young stroke survivors
3. Podcast or video produced by young stroke survivors
4. Podcast or video produced by researchers or other professionals
5. Article about other young stroke survivors' experience
6. Access to peer support
7. A telehealth consultation (talk on the phone with someone who is trained to help)
8. Talk face-to-face with a skilled professional (e.g. stroke doctor, physiotherapist, social worker, etc.)
9. Other

You said you have the following need(s) in the Body and Mind category:

You said you have the following need(s) in the Emotions category:

You said you have the following need(s) in the Information category:

You said you have the following need(s) in the Daily Life category:

You said you have the following need(s) in the Relationships category:

You said you have the following need(s) in the Social category:

You said you have the following need(s) in the 'Other' category:

You have now completed the survey.  If you would like to save your responses, please click ‘Submit’. If you would like to delete your responses, exit out of your browser without clicking ‘Submit’. Once you submit your responses, they cannot be changed or deleted.

If you have any questions about this study please contact Dr Julie Bernhardt at The Florey Institute of Neuroscience and Mental Health: 03 9035 7072 julie.bernhardt@florey.edu.au

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