Q Fever Patient Experiences

Invitation and Participant Information

Invitation
Anyone in Australia who has experienced infection with Q fever or has been the parent or carer of a child who has experienced Q fever infection is encouraged to do the questionnaire. We want to include as wide a range of experiences as possible including people who have been infected without symptoms, those who have had severe illness and parents or carers who have cared for a child with Q fever.

Researchers:
Dr Tabita Tan
PhD Candidate

Dr Jane Heller (Principal supervisor),
Associate Professor Epidemiology & Public Health

Dr Marta Hernandez-Jover (Co-Supervisor),
Associate Professor Epidemiology & Public Health

Ms Lynne Hayes (Research Assistant)

This study is being conducted by researchers from the Graham Centre for Agricultural Innovation, and the School of Animal and Veterinary Sciences at Charles Sturt University.

Before you decide whether or not you wish to participate in this study, it is important for you to understand why the research is being done and what it will involve. Please take the time to read the following information carefully and discuss it with others if you wish.

What is the purpose of this study?
The aim of this questionnaire is to investigate the impacts that Q fever has on patients and families in Australia and their experience with achieving a diagnosis for their illness. Patient perspectives on the medical investigation are useful to explore the likelihood of timely disease detection. Information from this questionnaire will inform the development of an emergency response plan to be used when a large Q fever outbreak in humans is identified.

Why have I been invited to participate in this study?
For this study we are seeking people 18 years old and above who have either experienced Q fever infection in Australia themselves or are parents or carers of children who have had such experience. This includes people with:

no symptoms and infection may be discovered when the pre-screening test for vaccination returns a positive result
illness following infection that was self-diagnosed or diagnosed through a medical practitioner

If your experience with Q fever infection was not in Australia, unfortunately you are not eligible to participate.

What does this study involve?
If you agree to participate, this questionnaire will take about 20 minutes to complete, depending on your answers. The questionnaire is conducted online using SurveyMonkey. You will be asked to answer closed and open questions about your experience with Q fever illness and the diagnostic process.

At the completion of this questionnaire you will have the opportunity to participate in the second phase of the research, which is a follow-up interview. If interested, you can provide your contact details which will be used to select participants for the second phase of the research. Participants who express interest in the interview will have their contact details attached to their questionnaire results to enable the research team to select a range of Q fever experiences for the interviews. You will be contacted by a member of the research team to let you know if you have or have not been selected for an interview.

We are aiming to complete up to 30 interviews. If we receive more than 30 expressions of interest, you may not be required to participate in an interview. We will contact you to let you know either way and please be assured that we genuinely appreciate your willingness to be involved. Participants who complete the questionnaire but do not want to be interviewed are not required to provide any contact details, so will be anonymous.

You are not obliged to agree to an interview if you choose to complete this questionnaire.

Are there risks and benefits to me taking part in this study?
Risks: Answering the questions may cause some emotional discomfort as you recall past events that affected your health and life. If, as a result of participating in this research, you feel you feel you need help or to talk to someone, support is available through BeyondBlue, https://www.beyondblue.org.au/, 1300 22 4636. Beyond Blue provides information and support to help everyone in Australia achieve their best possible mental health. You may also wish to seek support through an Australian Q fever group on Facebook available at https://www.facebook.com/groups/1425555117772682/.

Benefits: By participating in this research, you may benefit from having the opportunity to discuss the event and express your feelings about what happened. The data you provide will contribute to the development of a Q fever emergency response plan.

How is this study being paid for?
This part of the ‘Taking the Query out of Q fever’ project is supported by AgriFutures Australia, through funding from the Australian Government Department of Agriculture as part of its Rural Research and Development for Profit program.

Will taking part in this study cost me anything, and will I be paid?
Apart from the time involved in completing the questionnaire, there are no costs or payments associated with participating in this research. Everyone who has completed the questionnaire will have the chance to go into a prize draw to win one of five $50 e-gift cards. The draw will be done 2 weeks after the close of the questionnaire and winning participants will receive their e-gift card via email. These gift cards are funded by AgriFutures through ‘Taking the Query out of Q fever’ project. If participants withdraw from the study before the close of the questionnaire, they will not be included in the prize draw. To enter the prize draw please provide your email in the separate form at the end of the questionnaire.

What if I don’t want to take part in this study?
Participation in this research is entirely your choice. Only those people who give their informed consent will be included in the project. Whether or not you decide to participate is your decision and will not disadvantage you.

What if I participate and want to withdraw later?
Only participants who provide identifying information to take part in the follow-up interview process will be able to withdraw from the questionnaire. The questionnaire is collected anonymously for all other participants who do not provide identifying details, and it will not be possible to withdraw from the study once the questionnaire is submitted. You can withdraw from the study before final submission of the questionnaire, simply by closing the browser.

Participants who provide identifying details for the interview will be able to withdraw from the study for up to two weeks after completing the questionnaire without consequence. If you withdraw, your data will be removed from the project dataset and excluded from further analysis and reporting. Please contact Tabita Tan on ttan@csu.edu.au if you no longer wish to be part of this research.

How will my confidentiality be protected?
This online questionnaire is using the SurveyMonkey software platform. SurveyMonkey’s privacy policy and security statement are available via these links: https://www.surveymonkey.com/mp/legal/privacy-policy/; https://www.surveymonkey.com/mp/legal/security/

Any information collected by the researchers is confidential and will be stored securely and only accessed by the researchers unless you consent otherwise, except as required by law. Data and results presented for publication will be de-identified. Data will be retained for at least 5 years after final publication at Charles Sturt University, School of Animal and Veterinary Sciences, Wagga Wagga.

What will happen to the information I give you?
Questionnaire data will be combined and analysed together. The relevant outcomes will be published in scientific journals, relevant websites and in the thesis to be submitted for Dr Tan’s doctoral degree. Outcomes may also be presented at conferences and seminars. If you would like a copy of the final report, please provide your email address when prompted.

What should I do if I want to discuss this study further before I decide?
If you would like further information please contact:
     Dr Tabita Tan
     Charles Sturt University
     Email: ttan@csu.edu.au

     Associate Professor Jane Heller
     Charles Sturt University
     Phone: (02) 6933 2839
     Email: jheller@csu.edu.au

Who should contact if I have concerns about the conduct of this study?
Charles Sturt University’s Human Research Ethics Committee has approved this project [Protocol number TT02888]. If you have any complaints or reservations about the ethical conduct of this project, you may contact the Committee through the Ethics and Compliance Unit via the following contact details:
     The Governance Officer
     Human Research Ethics Committee
     Ethics and Compliance Unit
     Locked Bag 588
     Wagga Wagga NSW 2678
     Phone: (02) 6933 4213
     Email: ethics@csu.edu.au

Any issues you raise will be treated in confidence and investigated fully and you will be informed of the outcome.

Thank you for considering this invitation.

This participant information can be saved or printed for your personal record. For Windows: Pressing PRINT SCREEN captures an image of your entire screen and copies it to the Clipboard in your computer's memory. You can then paste (CTRL+V) the image into a document, email message, or other file. For Mac: To take a screenshot, press and hold these three keys together: Shift, Command and 3. If you see a thumbnail in the corner of your screen, click it to edit the screenshot. Or wait for the screenshot to save to your desktop.