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 providing care and support to people affected by mitochondrial disease (mito). Your participation will offer valuable insights into the challenges and opportunities for improving services, support networks, and programs for the mito community in Australia.
Please read this form carefully and feel free to ask any questions about anything you want to know more about. Participation in this interview is entirely voluntary, and your decision to take part will not affect your relationship with the Mito Foundation, either now or in the future.
By consenting to participate, you confirm that you:
Understand the information provided in this form.
Agree to take part in the interview, as described here.
Consent to the use of your information and insights, as outlined 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
After you provide consent, a member of our Mito Foundation team will contact you to arrange a convenient time for your interview. You will have the choice to speak with us over the phone or via video conferencing platforms such as Zoom.During the interview, we will explore topics relevant to:
The care and support you provide to individuals living with mito.
Your experiences with service accessibility and delivery.
Challenges and barriers faced by the mito community.
Recommendations for improving support services and programs.
We understand the importance of your time and will aim to keep the interview to approximately 30–40 minutes. Breaks can be taken at any time, and you may pause or stop the interview as needed. You can also choose to continue the discussion on another day if required.
The interview will be recorded to ensure accuracy in capturing your insights. Recordings will be securely stored and only accessible to the project team.
Keeping you safe
We acknowledge that discussing your experiences may raise sensitive issues. You can skip any questions or end the interview at any time without providing a reason. If you feel distressed during or after the discussion, support is available:
Our commitment to confidentiality
Your personal and sensitive information will remain strictly confidential. Any identifying details will be removed from our records, and if your words are quoted, we will ensure anonymity.
Following the interview, we will send you an anonymised transcript of the discussion, allowing you to review, amend, or remove any part of your contributions.
Using your story for future work
The Mito Foundation has established the Mito Stories Database to store insights and stories like yours for future initiatives. By consenting, you grant permission for us to use your contributions in future work without needing to seek further approval. All future work will still require ethics approval to ensure responsible use.
Your contributions will help make a larger impact by informing advocacy, service development, and research initiatives. To protect your privacy, all identifying information will be removed.
Participation in this database is entirely voluntary and will not affect your relationship with the Mito Foundation. For more information, visit: www.mito.org.au/mito-stories.
Sharing data with external researchers
In the future, anonymised and de-identified data may be shared with qualified external researchers. All data sharing will require approval from a Human Research Ethics Committee (HREC) and will be limited to researchers whose goals align with the Mito Stories Project. Your confidentiality and privacy will always be maintained.
Who to contact for more information
If you have any questions or need additional information, please contact:
Clare Stuart
Manager Advocacy and Engagement, 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 may withdraw your consent at any time by contacting the Mito Foundation via email at mitostories@mito.org.au or by phone at 1300 977 180. Upon withdrawal, we will remove your individual contributions from the Mito Stories Database and make every effort to exclude your input from group discussion notes, quotes, and case studies in past publications or submissions.
Thank you for considering this opportunity to share your insights.
