Anxiety screen - for research looking at helping autism spectrum adults to self manage anxiety

 INFORMATION SHEET for:  ‘Developing self-awareness in adults on the autism spectrum as a tool to decrease anxiety levels.’

Investigators:
Dr Emma Goodall                                                          Dr Jane Nugent
Disability and Social Inclusion Unit                                 School of Nursing
Flinders University                                                         University of Otago
Ph:  +61 8 8201 3745                                                    Ph:  +61 4 0546 4021

emma.goodall@flinders.edu.au

 
Description of the study:
This study is part of the project entitled ‘Developing self-awareness in adults on the autism spectrum as a tool to decrease anxiety levels. This project will investigate the usefulness of a specially designed questionnaire (the UCC-SR) to develop more self-awareness and help to self-manage anxiety. This project is supported by Flinders University disability and social inclusion unit.

Purpose of the study:
This project aims to find out if the UCC-SR: increases self-awareness in adults on the autism spectrum, helps adults on the autism spectrum to self-manage their anxiety, is easy to use and perceived as useful by participants.
 
What will I be asked to do?
You are invited to complete a quick online quiz called the GAD-7, which is a common tool for evaluating levels of generalised anxiety. Once you have completed this you will be sent a long questionnaire called the UCC-SR by email or post. You complete this in your own time and then email the principal researcher to let them know you have finished. You can choose to email a copy of your completed UCC-SR if you would like to. Then 1, 3, 6 and 9 months after telling the researcher that you have completed the UCC-SR you will be emailed a GAD-7 or a web link to a GAD-7 to complete again. Each of the GAD-7s takes about 2-5 minutes to complete. The UCC-SR asks you to note your strengths and areas of difficulty through structured questions. There are no right or wrong answers and you can keep your completed UCC-SR whether or not you choose to provide a copy to the research team and whether or not you complete the research. Finally you will be asked to evaluate the UCC-SR and how easy it was for you to use. Again there are no right or wrong answers and you can be as detailed or as brief as you like.

Time that will be taken up by this research:
You will participate in this research online, or if you would like to receive paper copies of the UCC-SR and GAD-7s these can be mailed out to you. This means that you can do these wherever you would like, in your own time. The following table is a guideline that shows approximately how much time each element of the research will take should you choose to participate.
 
Component of Research                          Expected Time Commitment
1.    GAD-7 initial                                                     5 minutes
2.    UCC-SR                                                           1-3 hours
3.    GAD-7 1 month after the UCC-SR                   5 minutes
4.    GAD-7 3 months after the UCC-SR                 5 minutes
5.    GAD-7 6 months after the UCC-SR                 5 minutes
6.    GAD-7 9 months after the UCC-SR                 5 minutes
7.    Evaluation of UCC-SR use and usefulness     5-60 minutes           Total time:1 ½ to 4 ½ hours sp

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/

24/7 crisis hotline Australia - 13 11 14                              24/7 crisis hotline New Zealand - 0800 543 354

Free peer support services for people experiencing mental illness or those supporting them in New Zealand
Canterbury and West Coast - (03) 379 8415 / 0800 899 276 (1pm to midnight, seven nights)
Wellington 0800 200 207 - (7pm–1am, Tuesday to Sunday)
Auckland 0508 927 654 (8pm to midnight, seven nights)

This research project has been approved by the Flinders University Social and Behavioural Research Ethics Committee (Project number 6835).  For more information regarding ethical approval of the project the Executive Officer of the Committee can be contacted by telephone on 8201 3116, by fax on 8201 2035 or by email human.researchethics@flinders.edu.au