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PARTICIPANT INFORMATION SHEET (SurveyMonkey questionnaire)

Project title
The estimated value of informal care giving in mental health
Purpose of study
Mental health carers play a very important role in providing support to people affected by mental illness. What we
do not know is how much it would cost the government to replace all the support provided by informal carers with
formal mental health services. This is one method of highlighting the value of informal care, and has been effective
in previous investigations of carers of people with all types of disability. In 2015, it was estimated that over 1 in 8
Australians (2.86 million people) provided informal care to someone with a disability and that it would cost the
government $60.3 billion to replace this level of support with formal care providers (Access Economics, 2015).
Similar to the Access Economics report (2015), we want to demonstrate to government and the general public how
much it would cost to replace the care that yourself and other mental health carers provide. To achieve this, we will
be administering a small carer questionnaire which we invite you to take part in. The results will highlight the
significant role that carers play in the provision of mental health support, and may be used to advise policy
makers and advocate for greater recognition of mental health carers and their support needs.
This research study, commissioned by Mind Australia, is being conducted by Sandra Diminic, Emily Hielscher, Yong Yi
Lee, Meredith Harris and Professor Harvey Whiteford from the School of Public Health, The University of
Your participation
We invite you to participate in this online questionnaire to help highlight the value of mental health carers. In order
to participate you must:
1) Be 18 years or older
2) Care for someone aged 16 years or older;
3) Care for someone mainly because of a mental health condition. For the current research study that
includes, for example:
- major depression
- bipolar disorder (manic depression);
- anxiety disorders (like panic disorder, obsessive compulsive disorder, post-traumatic stress disorder,
generalised anxiety disorder)
- schizophrenia, schizoaffective disorder and other psychotic disorders
- borderline and other personality disorders
- eating disorders
- behavioural disorders (e.g. conduct disorder and ADHD)
It does not include autism spectrum disorder, substance abuse/dependence (drug or alcohol problems) or
neurological disorders (such as dementia, stroke and epilepsy) if this is the main or primary diagnosis;
4) Not be employed to provide your caring role (i.e. formally paid). This does not exclude people receiving a
government benefit such as carer payment from participating in the study.
Participant information SurveyMonkey questionnaire v2 15Mar16

The questionnaire should take 20-25 minutes to complete and includes multiple choice and open-ended questions
about your personal characteristics, your care recipients characteristics, and your caring role. Please note that you
do not have to finish the questionnaire in one sitting; you can exit the questionnaire at any point and come back to it
at a later time. You may skip any question which makes you feel uncomfortable or which you cannot answer.
Once you have completed and submitted the online questionnaire, your responses will be downloaded onto a
secure server. All information you provide will be treated in a confidential manner and will be kept securely at UQ.
Your data will correspond with a unique code to protect your identity.
Benefits and risks
There are no direct benefits to participating in this project. However, to compensate for your time and effort, you
will be given the opportunity to enter your name into a draw to win one of three Coles Group and Myer gift cards
valued at $100 (first prize), $75 (second prize), and $50 (third prize). You and other mental health carers may also
benefit in the longer term as a result of improvements in knowledge about the critical role of mental health carers.
There are no specific risks associated with participation in this research. However, if you wish to discontinue, you
can opt out of participating at any time without prejudice.
For further information
Emily Hielscher will be glad to answer your questions about this study at any time. You may contact her on
07 3271 8668 or If you want to find out the final results of this study, you should
contact Emily. The results will be published in a final report and in subsequent academic papers.
This study adheres to the Guidelines of the ethical review process of The University of Queensland and the National
Statement on Ethical Conduct in Human Research. Whilst you are free to discuss your participation in this study with
project staff (contactable on 07 3271 8668), if you would like to speak to an officer of the University not involved in
the study, you may contact the Ethics Coordinator on 07 3365 3924.
Your consent
It is important that you understand that your involvement in the research is voluntary and there is no penalty for not
participating, or discontinuing your participation. You can decline to answer any question by skipping it and moving
onto the next one. You can withdraw your participation at any time by not submitting your responses. However,
once you have clicked the Submit button, you cannot withdraw your responses.
Do you agree to participate in this research study?
If you select YES this means you understand the purpose and nature of this study and you are participating
voluntarily. If you do not wish to participate in the research study, please decline participation by selecting NO.

Participant information SurveyMonkey questionnaire v2 15Mar16