PARTICIPANT INFORMATION SHEET (Surveymonkey Questionnaire)

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 persons with a disability and that it would cost the government $60.3 billion to replace this level of support with formal care services (Access Economics, 2015). However, we do not have equivalent figures for the value of informal mental health care specifically.

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 Queensland. 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

Participant information —SurveyMonkey questionnaire v2 15Mar16 1 - 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.

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 save your responses and come back to it at a later time by clicking “Next” on the current page and then by closing the browser. You MUST click “Next” to save your responses on the current page. If you click on the “Withdraw” link the responses you entered are not saved and you will not be able to access them again. To access your previously saved responses you must be using the same browser on the same computer, and not have cleared the cookies. 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 [email protected]. If you are having technical issues with the online questionnaire please email Emily and she will send you a paper-based version. 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

Participant information —SurveyMonkey questionnaire v2 15Mar16 2 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 3