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Online Survey Participant Information

 

Project title: Thinking Big: YOUR priorities for OUR research

Name of Researchers: Catherine Elliott, Glenn Pearson, Elizabeth Chester, Steve Zubrick, Anne McKenzie, Mitch Hartman, Kate Griffiths, Belinda Frank and Ashleigh Thornton

Invitation:

You are invited to partner with the Leadership Team and researchers at the Telethon Kids Institute to identify the issues and questions that you feel are important to future research to improve child health and development. This may include your thoughts or concerns relating to prevention, diagnosis, treatment or support for child and youth health and wellbeing.

The Thinking Big Project is part of the Telethon Kids Institute’s commitment to working together with community members, as partners, to progress research that is useful and used. We want to hear from community members about the important issues or concerns for children and young people (14-24 years of age), and what you would like to see researched in the future. 

You have been invited to participate because you expressed an interest in being part of the Telethon Kids Institute’s community engagement work.

Aim of the Study (What is the project about?)

The aims of this project are to:  

Develop a set of community priorities to inform future research to improve child health, development and wellbeing.

We will do this through a process that includes:

  1. An on-line survey to find out from members of the community what they think are important questions and issues about child health and wellbeing.
  2. Consensus workshops to discuss and develop community priorities from the results of the survey.
  3. A final consensus workshop to develop ten community priorities from the results of the initial workshop. These priorities will be used to inform and guide decisions about future research of the Telethon Kids Institute.

 

What does participation involve?

If you agree to participate you will be asked to:

  1. Complete a 10-15-minute anonymous online survey on your questions and issues about child health and wellbeing.
  2. (Optional) Register your interest to attend a half-day Priority Setting Partnership Project initial consensus workshop.
  3. (Optional) Register your interest to attend the full-day Priority Setting Partnership Project final consensus workshop.

 

Voluntary Participation and Withdrawal from the Study

Participation in this study is entirely voluntary. Should you no longer wish to be involved, you are free to withdraw at any time without explanation or justification by contacting the Community Engagement Manager on (08) 6319 1076 or email thinkingbig@telethonkids.org.au  Following this, any data of yours that has already been collected will be destroyed appropriately and not used in the study.

Your privacy

All project-related information including participant information will be treated in a confidential manner and be stored securely at the Telethon Kids Institute’s password-protected electronic database and will only be accessed by the research team.

We are required to store the data for a minimum of 7 years after publication or project completion, or until the participants have reached 25 years of age (whichever is later), after that time it will be destroyed. The information and data gathered from this study may be published, however the identity of participants will not be disclosed at any time. Participant privacy and the confidentiality of information provided by participants, is assured at all other times. The data will be used only for this project and will not be used in any extended or future research.

Possible Benefits

It is vital that any future child health research is informed by questions that are important to the community, including people who are interested and/or concerned with prevention, diagnosis, treatment or support for children and youth. Although there may not be a direct benefit to you as a participant, working together with the community to inform the development of a list of priorities to inform child health research will have a much greater impact on the community.

Possible Risks and Risk Management Plan

You may find it difficult to describe or express your ideas - there is no 'right way' to do this and the project team members will work with whatever you manage to tell us about. You may also feel potential distress when confronted with memories or stories. If you feel you need to speak with someone please contact:

 

Beyond Blue
Website: https://www.beyondblue.org.au/

Phone: 1300 22 4636
Chat: https://online.beyondblue.org.au/OutOfHours

 

Reimbursement

Participants will be offered $50 cash for attendance at the initial consensus workshop and $50 for attendance at the final consensus workshop.

Contacts

If you would like to discuss any aspect of this study with a member of the research team, or obtain a printed copy of this document, please contact the Community Engagement Team on (08) 6319 1076 or email thinkingbig@telethonkids.org.au

 

Approval to conduct this research has been provided by the University of Western Australia, with reference number 2021/ET000241, in accordance with its ethics review and approval procedures.  Any person considering participation in this research project, or agreeing to participate, may raise any questions or issues with the researchers at any time.  In addition, any person not satisfied with the response of researchers may raise ethics issues or concerns, and may make any complaints about this research project by contacting the Human Ethics office at UWA on (08) 6488 4703 or by emailing to humanethics@uwa.edu.au. All research participants are entitled to retain a copy of any Participant Information Form and/or Participant Consent Form relating to this research project.

Consent Statement

I have read the information provided and any questions I have asked have been answered to my satisfaction. I agree to participate in this research project, realizing that I may withdraw at any time without reason and without prejudice.

I understand that all identifiable information that I provide is treated as confidential and will not be released by the investigator in any form that may identify me unless I have consented to this.  The only exception to this principle of confidentiality is if this information is required by law to be released.