What benefit will I gain from being involved in this study?
You will help the research team to evaluate the usefulness of the UCC-SR as a tool to help people on the autism spectrum self-manage their anxiety. You may develop more self-awareness and decrease your anxiety through your participation. However, this is not known and you may not find any benefit to being involved. Your feedback on the ease of use of the UCC-SR will guide future changes to the way it is written and presented.
Will I be identifiable by being involved in this study?
In order to participate you need to provide a current and valid email address for the follow up sections of the research. This email will be linked to your GAD-7 results but these will then be stored using codes rather than your email address. If you choose to provide a copy of your completed UCC-SR this will be linked to your code and your name/email removed from the document.
Are there any risks or discomforts if I am involved?
The investigator anticipates few risks from your involvement in this study. If you have any concerns regarding anticipated or actual risks or discomforts, please raise them with the investigator. It is possible that completing the UCC-SR will be confronting or challenging and may even provoke some anxiety for some people. If this is the case you are encouraged to contact a free local/online/phone support organisation. Contact details are at the bottom of this information and will be provided with each GAD-7 email and the email containing the UCC-SR. If the researchers note that your anxiety in increasing through your responses they will contact you by email with further support service details and may ask if there are any major events happening that may be causing a spike in your anxiety levels. If this is the case specific support services will be recommended as well as guidance provided to revisit your completed UCC-SR to look at the strengths you have already identified that might help you to manage more effectively.
How do I agree to participate?
Participation is voluntary. You must be over 18 to participate, but you can withdraw at any time by not completing further quizzes or sending information back to the researchers. If you want to make specific comments that you would like including in research reports or articles please contact the researcher via email to state this. If these comments are then used you will be given the opportunity to be quoted anonymously or have the quote attributed.
How will I receive feedback?
Outcomes from the project will be summarised and emailed to you by the researcher. In addition a personal summary of your anxiety levels as assessed by the GAD-7s over the course of the research will be emailed to you after the research has been completed. Thank you for taking the time to read this information sheet and we hope that you will accept our invitation to be involved.
Free support services and organisations:
Autism Asperger Women’s Group ACT - http://www.autismaspergeract.com.au/our-services/the-jeanette-purkis-women-s-group/
Asperger Services Australia - www.asperger.asn.au
Aspect adult services, choose and connect Australia wide - http://www.autismspectrum.org.au/chooseandconnect
CASPAR - Canberra Autism Spectrum Friends and Relatives https://www.facebook.com/groups/casparcanberra/
The I Can Network https://www.facebook.com/theicannetwork
Autism Talk https://www.facebook.com/AutismTalk
Aspiehelp Christchurch New Zealand http://www.aspiehelp.com/ 03 337 6 337 or info@aspiehelp.com
Asperger's Syndrome New Zealand https://www.facebook.com/groups/ASNZGROUP/
Online evidence based mental health support - http://digitaldog.org.au/ http://www.calm.auckland.ac.nz/
