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chistudy@latrobe.edu.au
AS ALWAYS, WE THANK YOU FOR YOUR CONTINUED INTEREST IN THE CHI STUDY
The researchers at the Australian Research Centre in Sex, Health and Society (ARCSHS), La Trobe University invite you to take part in a national study on the health and social impacts of living with hepatitis C.
This project is funded by the Australian Government Department of Health and Ageing.
Project Summary
The study will:
- Identify the health and social impact of hepatitis C infection
- Provide information to improve health and social support services for people with hepatitis C and help develop healthier public policy
We are asking people who have been told they have hepatitis C to complete an online survey. We will then contact them again at regular intervals (6 monthly in most cases) so we can find out how if their life has changed since we last contacted them.
Please be assured that you have not been specifically identified to be in the study, which is open to anyone in Australia with a history of hepatitis C.
Expected Outcomes
The research will provide information about the long term physical and social experiences of life after a diagnosis of hepatitis C infection. The results of the study will inform the development of appropriate health policy, and provision of education, treatment, and support services for people affected by hepatitis C.
We will provide summaries of the findings and copies of all formal reports of the project at regular intervals on the CHI Study website. The results of this project will also be disseminated through publications and presentations at conferences.
What’s involved?
Should you choose to be involved in the study, the first questionnaire will take between 20 and 45 minutes to complete on line depending on how many of the questions are relevant to you. We will then contact you by email and ask you to complete another questionnaire. Most people will be contacted in 6 months, but if you have just been diagnosed with hepatitis C or being treated we will contact you in 3 months to complete a questionnaire.
If you provide an email address, we can remind you three to six months to complete another survey at the website – but for most participants the reminders will be six-monthly. With your permission, we will continue to contact you on this regular basis so that you can update us on how you are going and if things have changed since we last contacted you. We hope that the study will be running for a few years or more, but you can easily stop participating at any stage by clicking on a ‘withdrawal’ link and we will stop sending you any reminders as soon as you do so. It would not be possible, however, to remove any information that you may have already provided us as it is not linked to your email address”
Your confidentiality is important to us. Your email address will not be linked to any of the information that you provide. The follow up surveys are shorter than the first one, and should not take more than 15 minutes to complete.
Questions will cover some of the following topics:
- How you live (housing, education, financial situation)
- Your health, how you were diagnosed with hepatitis C, and how your health has been affected (or not) by hepatitis C
- Your history, or intentions of accessing hepatitis C treatment (both medical and complementary treatments)
- How hepatitis C affects, or not, your everyday life – your work or study, your social relationships and your lifestyle
You do not have to answer any questions that make you feel uncomfortable. If you do find that participating in the study raises some sensitive issues for you, the CHI study website contains a list of a number of useful links to services that can provide you with good advice about how to look after yourself and who else you can contact for support in your area.
Participation is voluntary:
This is a research project and you do not have to participate in it. Even if you start participating in the study, you can stop at any time. Your decision to be involved or not will not disadvantage any care you will receive from any health service or clinic.
Should you agree to participate, you will be asked to carefully read the information provided on the website and confirm your voluntary participation by checking the acknowledgement box. It is important that you understand the aims of the research before you tick the box.
Your participation in this research is greatly appreciated and the information you provide will help other people with hepatitis C.
Confidentiality
All information will be strictly confidential and anonymous.
The information you provide will be stored electronically in a password secured file. Only researchers immediately involved in the study will have access to the information provided in the surveys. While we request your email address, it forms part of the automatic reminder system only, and is not linked to any information you provide.
Because we hope that this study will develop into a long-running project which will help to provide valuable information about the ongoing needs of people with hepatitis C, it is possible that some of the stored information might be used in future – to evaluate the impact of national and local strategies, for example. Should this occur in the future, please be assured that nobody can identify individual people who participate in the study.
Questions or complaints
Any questions regarding the project can be directed to the Andrew Larner, Australian Research Centre in Sex, Health and Society on (03) 9285 5373 or to the Head Researcher: Dr Stephen McNally, Australian Research Centre in Sex, Health and Society on 9285 5246.
If you have any complaints or queries that the investigator has not been able to answer to your satisfaction, you may contact the Secretary, Human Ethics Committee, Research Services, La Trobe University, Victoria, 3086 – T: (03) 9479 1443, e-mail: humanethics@latrobe.edu.au.
