PARTICIPANT INFORMATION SHEET AND CONSENT
Chief Investigator
Professor Sharon Lawn, Flinders University
Tel: 0459 098 772
Chief Investigator
Professor Lisa Brophy, La Trobe University
Tel: 03 94792387
Co-Investigator
Assoc Professor Chris Maylea, La Trobe University
Tel: 03 9479 1284
Co-Investigator
Dr Edwina Light, University of Sydney
Tel: 02 9036 3405
Co-Investigator
Ms Vrinda Edan, University of Melbourne
Tel: 0433 054 346
Co-Investigator
Ms Tessa-May Zirnsak, La Trobe University
Tel: 0404 994 722
Description of the study
Australia has among the highest rates of forced community treatment for mental illness in the world but there is considerable variation across the country and between mental health services. Some groups of people are subjected to forced treatment more than others. You are invited to participate in an online survey that will investigate the perspectives of people who have direct experience of being placed on community treatment orders (CTOs) for their mental health, and also the perspectives of families or carers. This survey is part of a larger study funded by the Australian Research Council which aims to understand how and why CTOs varies, with the ultimate goal of informing the development of better models of care that reduce coercive actions by mental health services. The study is supported by La Trobe University, Flinders University, University of Melbourne, University of Sydney and Lived Experience Australia.
Purpose of the study
This study aims to find out your experiences with CTOs, including your understanding of whether, when and why a CTO was made. Your responses will enable us to understand and compare the justifications for forced community treatment for a broad range of people across Australia.
Benefits of the study
Sharing your experiences will help to build an understanding of the factors that underpin the use of forced community treatment, and it is hoped that it will improve treatment for consumers. This study will help us identify if differences in justifications for CTO use are related to factors such as variations in state/territory laws, policies, funding and/or culture in mental health services. Whilst you may not receive any direct benefit from your involvement in this study, the feedback you provide will help to generate new knowledge that may lead to development of better models of care for people with severe mental illness.
Participant involvement and potential risks
If you agree to participate in the research study, you will be asked to complete a brief anonymous online survey which will take about 30 minutes. The survey is seeking your views. If you wish or need to, you may seek assistance from a trusted family member, friend or peer to help you access or complete the survey.
We anticipate very limited, if any, risks from your involvement in this study. If you are concerned that you may experience any distress by completing the survey, you may wish to discuss this information sheet, the project, or the survey questions with a support person you trust prior to making a decision.
If you experience feelings of distress as a result of participation in this study, please seek support from those who you usually feel comfortable to reach out to. This may be a trusted family member, friend, GP, or your mental health support service. Alternatively, you may wish to contact the following organisations for support:
• LifeLine 13 11 14 or http://www.lifelineadelaide.org/?gclid=CNKV1ce1tNMCFYwHKgodas8FdA
• Beyond Blue Support Service on 1300 22 4636 or https://www.beyondblue.org.au/
Families or carers may wish to contact the following services for support:
• The Carer Gateway Counselling Service 1800 422 737 or www.carergateway.gov.au
• 13 Yarn for Aboriginal and Torres Strait Islander person/peoples
Withdrawal Rights
Participation in any research project is voluntary. If you do not wish to take part, you do not have to. You may elect to not answer any survey question or just close the internet browser and leave the online survey. Submission of the anonymous survey will indicate your understanding of the study and consent to be involved. Once you have provided your survey responses, it will not be possible to withdraw your survey contributions due to the inability to identify them from the overall responses.
Confidentiality and Privacy
Only the researchers listed on this form have access to the information you provide. They all have current certificates for working with vulnerable groups and will take all possible steps to ensure privacy and confidentiality are adhered to at all times.
In recognition of your participation, you can choose to receive a $10 voucher, sent via your email address or phone number (electronic voucher) or postal address (hardcopy voucher). You can include your preferred contact details at the end of the survey via a link to a separate confidential online area so that your survey responses and contact details are stored separately. We will not be able to link it back to your survey answers.
We anticipate the study results will be published and presented in a variety of forums. In any publication or presentation, information will be provided in such a way that you cannot be identified. No data, including identifiable, non-identifiable and de-identified datasets, will be shared or used in future research projects.
Data Storage
The information collected will be stored securely on a password protected computer and/or Flinders University server throughout the study. Any identifiable data will be de-identified for data storage purposes unless indicated otherwise. All data will be securely transferred to and stored at Flinders University for seven years after publication of the results. Following the required data storage period, all data will be securely destroyed according to university protocols.
How will I receive feedback?
On project completion, a short summary of the outcomes will be provided through Lived Experience Australia's monthly e-news, and from the project website: https://healthsciences.unimelb.edu.au/departments/nursing/about-us/centreformentalhealthnursing/research/factors-factors-affecting-ctos-research-study .
Ethics Committee Approval
The project has been approved by Flinders University's Human Research Ethics Committee (HREC No: 6854).
Queries and Concerns
If you want any further information concerning this project you can telephone the principal researcher, Professor Sharon Lawn on 0459 098 772. If you have any complaints or reservations about the ethical conduct of this study, you may contact the Flinders University's Research Ethics and Compliance Office team either via telephone (08) 8201 2543 or by emailing the Office via human.researchethics@flinders.edu.au.
Thank you for taking the time to read this information sheet. By submitting this survey, you are consenting to participate in this study and to the conditions outlined in the Participant Information Form.