.jpg)
Step 1: Please read the information in the Participant Information Statement
The following Participant Information Statement tells you about this research project.
It explains what will happen if you or your child takes part in this research.
Knowing what is involved will help you decide if you want to take part in the research.
Please read this information carefully and be confident that you understand what is says before you agree to participate.
Step 2: Consent
If you decide to take part in this research, you will need to sign a consent form. The consent form is at the end of the information section.
If your child is aged between 10 and 17 years, or has high support needs for their communication, there is an information and assent sheet for your child, which explains to them about this research and what we’d like them to do if they take part; and there is also a consent form for you, as their parent/ carer.
Step 3: Register
After you consent for you (or your child) to take part in this research, we will ask you to provide contact details and some other information about you. This information will help us contact you to organise when and how you (or your child) will participate in the research.
If you have any questions about this research, project, please contact the research team
Kaaren Haas, Research Officer, Aspect Research Centre for Autism Practice
Email to research@autismspectrum.org.au
Telephone 02 8868 8508
Participant Information Statement
You’re invited to take part in this research if you are:
- An autistic person aged over 10 years who lives in Australia, to tell us about your life
OR
- The parent /primary carer of an autistic person of any age who lives in Australia, to tell us about your life as the carer of an autistic person. You can also tell us about the life of your autistic child or an autistic person you care for, if they are not able to do so themselves.
What is this research about?
The aim of this research is to find out the priorities of Australian autistic people and their families, about the services and supports they need so that they can live a good life.
The findings from this research will be used to tell us what future research we need to do so that autistic people in Australia and their families have the services and supports that match their priorities.
Who is organising and funding this research?
This research project is being conducted by the Aspect Research Centre for Autism Practice (ARCAP) and Macquarie University. This project is funded by Autism Spectrum Australia (Aspect).
Research team
- Professor Liz Pellicano, Macquarie University
- Kaaren Haas, Research Officer, ARCAP
- Dr Trevor Clark, National Director, ARCAP
- Vicki Gibbs, National Manager, ARCAP
This study has approval
This study has been approved by the Macquarie University Human Research Ethics Committee (Approval ID 9028).
What am I being asked to do?
You can choose from two ways take part in this research:
- You can take part in an interview with a researcher, either by video call or by telephone call; or
- You can write or record your answers to a set of questions that we will send to you.
You can tell us which way you want to take part when you register to take part in the research.
If you choose an interview
When you register to take part in an interview, the researcher will then first contact you to explain about the interview, and to get to know you, so that you are familiar with the researcher.
During this session, the researcher will ask you a set of questions to collect some basic information about yourself, such as your age, gender, education and work.
The researcher will also make a time to call you in about one week for your interview.
In the interview, the researcher will invite you to talk about what your everyday life is like, what’s important to you, any difficulties you have doing what you want to do; the services and supports you need to be able to do these things, and any issues you experience in getting these services and supports. You will be able to choose what you want to talk about.
Before the interview, we will send you a copy of the questions we will ask you in the interview. We will also ask you about your needs and preferences during the interview, such as how you would like to communicate and any sensory needs.
This interview will take about 30 minutes to 90 minutes, depending on how much information you want to share.
We will audio-record the interviews so that we can remember everything that you tell us.
In the interview, you can have a support person with you - for example, a family member, carer, support worker, therapist, teacher or friend. They will be there to help you feel comfortable during the interview, so that you can have your say. If you decide, this person can also answer questions for you, on your behalf (this is called a proxy).
During the interview, you will be able to take a break or stop the interview at any time. If you decide to stop, you don’t need to give us any reason.
If you choose to give us your answers in writing or a recording
If you don’t want to do an interview, you can write or record your answers to set of written questions that we will send to you.
The questions will invite you to tell us what your everyday life is like, what’s important to you, any difficulties you have doing what you want to do; the services and supports you need to be able to do these things, and any issues you experience in getting these services and supports. You will be able to choose what questions you want to answer, and how much information you want to share.
We will also ask you to complete a short questionnaire to tell us some information about yourself, such as your age, gender, education and work. This will take about 10 minutes to complete. You can do this questionnaire online or on paper.
What are the benefits of taking part in this research?
By providing information about what matters to you, you will be helping the autistic community to have its say about the priorities of autistic people and their families for the services and support they want.
You will receive a gift card of $100 to pay you for your time in the interview.
What are the costs and risks for me in taking part in this research?
There is no cost to you to take part in this research.
It is unlikely, but it may be possible that either during the interview or afterwards, you feel upset about something that is talked about in the interview. IF you do feel upset, you can contact Lifeline on 13 11 14. Lifeline has trained volunteers ready to listen, and provide support and referrals if necessary.
We will ask you to give us information to identify you
By signing the consent form for this study, you agree that the research team can collect and use personal information about you for this research project.
So we can contact you if we need to, when you register to take part in this research, we will ask you for your name, email and telephone number, or the contact details of your support person
So we can correctly research about autistic people and their families, we will ask you to tell us about personal details such as any diagnosis you have received, your age, your gender identity and your education.
What will happen to the information I provide?
Any personal information we collect will remain confidential. We will use the information we collect in this research study to write reports, journal articles and conference presentations to tell other people about this research. In any report we produce about this research, we will not identify any individual person. Any individually identified information that you provide can only be disclosed to others by the researchers if (1) it is to protect you or others from harm, (2) a court order is produced, or (3) you provide the researchers with written permission.
All paperwork, electronic files and audio recordings relating to this research will be kept in a lockable filing cabinet or on a password-protected computer at Macquarie University and Autism Spectrum Australia. Only the research team will have access to this information. Data will be retained for at least five (5) years following completion of the project or 5 years after the publication of any journal article after which it and will be destroyed (shredded or deleted).
Can I get a copy of the results of the study?
When the research has been completed, we will email to you to tell you how you can get a summary report. This report will also be uploaded on the Aspect website at https://www.autismspectrum.org.au/about-autism/our-research/our-research-program/aspect-research-priorities
What if I don’t want to continue after I start?
Taking part in this research is voluntary.
Anyone can withdraw from the research at any time.
If you do so, there are no disadvantages, penalties or adverse consequences for you and your relationship with Aspect, Macquarie University or any other organisation or service. You do not need to give a reason if you decide to stop taking part in the research. The researchers will not collect additional personal information from you, although personal information already collected up to the time you withdraw may form part of the research project results. If you do not want your data to be included, please tell the researchers when you withdraw from the research, so that information about you that can be identified will be removed and will not be included in the any report arising from this research.
If you want to withdraw from the research, please tell us by sending an email to research@autismspectrum.org.au
What should I do if have a question, complaint or concern?
You have the right to have any questions answered by the research team at any time.
If you have any general questions about this research, please send an email to research@autismspectrum.org.au
If you have any complaints or concerns about your participation in this study that the researchers have not been able to answer to your satisfaction, you can contact the Director, Research Ethics and Integrity, Macquarie University, Telephone 02 9850 7854 Email research.integrity@mq.edu.au Please quote Project ID 9028 for this study.
