Providing your consent to join a one-to-one interview
You are invited to take part in a one-on-one interview about your experiences with mito. Your participation will provide valuable insights that can drive actions to enhance care coordination, communication, and overall support for the mito community in Australia.
Please read the information provided in this form carefully. You may ask us questions about any part that you want to learn more about. Participation in this interview is completely voluntary; whether you take part is completely your choice. Your decision will not affect your relationship with Mito Foundation, either now or in the future.
Your consent to take part in this study means that you:
understand everything you have read in this form
consent to take part in the interview, according to the methods described here
consent to the use of your information and story as described in this form.
Your information will be collected, stored, and used as described in this consent form and in accordance with Mito Foundation's privacy policy.
What your participation involves
Once you have filled out the consent form, one of our MF team members will be in touch with you to set up an appropriate time to speak with you. You will be given the choice to speak to us over the telephone, or via video conferencing platforms like Zoom.
We know that fatigue is a common issue for some of our community members, so we will try to keep the interview as short as possible, usually around 30-40 minutes. You will have the choice to take scheduled and unscheduled breaks. You can also end the interview at any time or choose to continue speaking with us another day.
The interview/discussion will be recorded to help us learn as much as possible. This recording will be stored on our secure server, and only our project team members will be able to view the file.
Keeping you safe
Talking about your experiences with mito can be distressing. You can take a break at any time during the discussion and can decline any questions you would prefer not to answer without having to provide a reason for this.
If you consent, a Mito Foundation Helpline team member will give you a phone call within a few days of the discussion to check how you are.
If you feel distressed, you can access support through the Mito Foundation Helpline (open Monday-Friday during business hours) on 1300 977 180. If you are alone and require immediate support, you can call:
Our commitment to keeping your responses confidential
Any personal and sensitive information that you share with us will remain confidential. We will exclude your name and other details that could identify you from our data and notes. If we use a direct quote from you, we will remove any identifying information.
We will send you a transcript of our discussion once we have spoken and give you an opportunity to review this. You may want to add to what you said in the discussion, correct something we have misunderstood, or delete something from our records.
How you can keep helping us make a difference through the Mito Stories Project
The Mito Foundation has set up the Mito Stories Database, which will store your story for future use. By completing this consent form, you are providing extended consent for us to keep and use your story again in the future without needing to ask you for permission each time. All future work involving your story will still need ethics approval to ensure it's done responsibly.
We use the stories you tell us to:
ensure that our advocacy reflects the views and experiences of the mito community and strengthen our policy-related submissions,
publish papers and reports that share insights from our community members to increase awareness of mito and encourage others to take action,
ensure that the research we fund reflects the mito community’s needs,
improve Mito Foundation’s support services, including our helpline, website information resources and NDIS Navigator services.
This means that your story will make a bigger impact by reaching more people using the story you have already shared with us. Read more about the Mito Stories Project on our website.
Consenting to storing your information in this database is also completely voluntary. Whether or not you decide to consent to this will not impact your relationship with Mito Foundation in any way.
Sharing data with external users
In the future, we may share anonymised and de-identified data from the Mito Stories Project with qualified external researchers. Any data sharing will be subject to approval by the Human Research Ethics Committee (HREC) and will only involve researchers with expertise and research goals aligned with the Mito Stories Project. Your confidentiality and privacy will always be maintained, and no identifying information will be shared.
Who to contact for more information
If you would like any further information about the interview/discussion or ask further questions about the Mito Stories Project, please contact:
Clare Stuart
Manager Policy and Advocacy, Mito Foundation
Email: mitostories@mito.org.au
Phone: 1300 977 180
This study has been approved by the Greater Western Human Research Ethics Committee. If you have any concerns or complaints about the conduct of the research study, you may contact the Executive Officer of the Ethics Committee, on (02) 6330 5948 and quote: 2024/ETH00804.
Withdrawing your consent
You can withdraw your consent at any time in the future by contacting the Mito Foundation (via email atmitostories@mito.org.auor via telephone on1300 977 180). If you withdraw your consent, we will remove your individual contributions from the Mito Stories database. We will make every effort to remove your contributions from notes from any group discussions you have participated in. Where possible, we will also remove any quotes or case studies related to you from our previous publications and submissions.
Thank you for taking the time to consider this invitation.
