Epilepsy and quality of life research
Principal Researcher: Krystina Wallis
Do you want to contribute to the growing body of research for epilepsy?
We are currently seeking volunteers for a new exciting study on quality of life and epilepsy! It will only take 30 minutes of your time and contribute to driving funding, policies and appropriate services for people living with epilepsy and their families.
The aims of the research are to better understand quality of life for people living with epilepsy and understand whether symptoms of anxiety and depression might be present. We also want to hear your recommendations on what would improve quality of life.
We are seeking 100 volunteers to take part in a 25-30 minute survey (option to do this online or via paper version in the post).
In addition, we are looking for approximately 10 volunteers to speak with us one-to-one in an open interview format (via phone or in person). This will involve understanding your experience of epilepsy as well your personal recommendations about improving quality of life for individuals diagnosed with epilepsy.
Please email firstname.lastname@example.org or contact 07 3435 5000 if you’re interested in participating.
All participation is voluntary and all responses to survey and interviews will be anonymised. You will be able to withdraw from the study at any time. For more information on ethical considerations of this research please contact us on the above email address.
Understanding the needs of people living with epilepsy and their carers
Principal Researcher: Jack Nicholas
I’m doing research about understanding the daily needs of people diagnosed with epilepsy and/or carers as part of my honours project at QUT School of Design. I was diagnosed with Benign Rolandic epilepsy when I was 2 years old and I feel that this is a great opportunity to gain a greater understanding and to try help others diagnosed with epilepsy.
I’m looking for people aged 18 and older with epilepsy or their carers to complete a 5-10 minute online questionnaire to help me gain insight into this topic. Please follow the links below if you’re interested in participating.
This study has been approved by the QUT Human Research Ethics Committee (approval number 1800000355).
Transition to adulthood project
Principal Researcher: Michelle King
My name is Michelle King and my daughter (now aged 20) lives with profound and multiple disabilities. I’m doing research for my PhD on how young people living with profound and multiple disabilities become adults in Australia’s legal and administrative system. What does the process of becoming a legal adult look like when a young person lives with severe intellectual disabilities? How does the legal system and government agencies deal with this time in that young person’s life? I’m interested in talking to people about their experiences with legal and administrative decision making with and for young people living with severe intellectual disabilities as they become legal adults in Queensland.
I’m at the Australian Centre for Health Law Research, which is in the Law School at the Queensland University of Technology (QUT). My PhD work is about the social and legal transition to adulthood of people with severe intellectual disabilities in Australia. I’m interested in how our current legal and administrative systems (like the NDIS, Centrelink, Disability and Community Services, guardianship and administration, banking and finance, and other similar agencies) work for young people living with profound and multiple disabilities as they become adults. I am looking for people to talk to who have been a legal and administrative supporter of someone with severe intellectual disabilities during the time they became an adult.
You might be able to help me by agreeing to be interviewed about your experiences if:
- The person you support has severe intellectual disabilities.
- The person you support is now aged 18-25.
- You made or provided support for some or all of their legal and administrative decisions when they were 14-18.
- You can be a parent, step-parent, grandparent, other family member, or anyone else who made legal decisions for the young person you support.
- You and your young person live in Queensland.
The interview will be with you AND the young person you support and would take around an hour and a half of your time. The interview can be at any place convenient to you and the person you support. The information from the interview will not be identifiable and you and the young person you support’s name and identifying details not be published.
If you are interested in participating or have any questions, please contact me via email at email@example.com or go to the project blog and fill in the contact form at https://transitiontoadulthood.blog/how-can-i-participate-in-this-project/
This study has been approved by the QUT Human Research Ethics Committee (approval number 1900000206).
Purple Day 2020
An Epilepsy Queensland Survey
How did you celebrate Purple Day in March? We would love to hear your thoughts on how you would like to get involved in 2020. Our survey should only take five minutes to complete. If you'd prefer you can phone us on 07 3435 5000 or email with your feedback.