Research Priorities for Children with Chronic Conditions - Survey

What is this study about?

You are invited to take part in a research study to identify important research questions for children with chronic health conditions. A list of research questions, ranked in order of importance, can help to inform researchers about what research topics are important to children with chronic disease, their family, and health professionals.

You have been invited to be part of this study because you are a young person (aged from 11 to 18 years) living with a chronic condition. This survey will also involve family members or caregivers, and health professionals such as doctors and nurses. This Participant Information sheet will tell you about the research study. It will help you decide if you want to take part or not. Please read it carefully. You can ask questions about anything that you don’t understand or want to know more about.

Participation in this research study is voluntary.

By giving your permission to take part in this study you are telling us that you:

  • Understand what you have read.
  • Agree to take part in the research study.
  • Agree to the use of your personal information as described.

You will be given a copy of this Participant Information Statement to keep.

Who is running the study?

The study is being carried out by the following researchers: Allison Tong, Researcher, at the School of Public Health University of Sydney; Jonathan Craig, Professor of Epidemiology, Sydney School of Public Health, The University of Sydney, and Pamela Lopez-Vargas, Project Manager, The Children’s Hospital at Westmead.

What will the study involve for me?

This study involves completing three online surveys. Survey 1 will ask you to suggest research topics for children with chronic health conditions. The topics will then be shown in a second survey. Survey 2 will ask you to rate how important you think the research topics are. The results will be shown in Survey 3 where you will be asked to look at the results and re-rate the research topics.

How much of my time will the study take?

Each survey will take about 15 minutes to complete. The surveys will be conducted around three weeks apart.

Who can take part in the study?

About 150 patients and caregivers, and 150 health professionals such as doctors and nurses will take part in these surveys.

Do I have to be in the study? Can I leave the study once I’ve started?

Being in this study is completely voluntary and no one can force you to take part. Your decision whether to participate will not affect your current or future relationship with the researchers or anyone else at the University of Sydney.

If you decide to take part in the study and then change your mind later, you are free to stop at any time. You can do this by leaving the survey.

By submitting your completed survey you are agreeing to take part in the study. Your responses in the survey will not be locked in until you click on the submit button. This means you can remove your responses any time before you have submitted the survey. Once you have submitted it, your responses cannot be removed because they will be anonymous and we will not be able to tell which one is yours. If you are under 18 years of age, your parent or legal guardian must also provide permission.

Are there any risks or costs associated with being in the study?

Apart from giving up your time, we do not think there will be any risks or costs linked with taking part in this study.

Are there any benefits linked with being in the study?

We cannot promise that you will get any benefits from being in the study.

What will happen to information about me that is collected during the study?

The surveys will be done using LimeSurvey. The survey information will be protected with a password. The results can only be seen by the researchers. By providing your permission, you are agreeing to us collecting information about you. Your information will only be used for the purposes of this study, unless you say otherwise.

The results may be printed in journals and presented at conferences. Your information will not be identified. The results will be as a group not individually.

Your information will be stored securely and your identity will be kept secret, unless needed by law. The data will be kept in a secured disk owned by the researchers. This will be protected with a password. The information will be kept for 5 years. After that time it will be deleted and the disk will be reformatted.

Can I tell other people about the study?

Yes, you are welcome to tell other people about the study.

What if I would like further information about the study?

Once you have read this information, you are welcome to discuss it with Allison Tong. She will also answer any questions you may have. You or your parent can contact Allison on +61 2 9845 1482 or by email

Will I be told the results of the study?

You have a right to receive information about the overall results of this study. You can tell us that you wish to receive this by indicating it in the online survey. The results will be in the form of a one page summary. You will receive this feedback after the study is finished.

What if I have a complaint or any concerns about the study?

Research involving humans in Australia is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The ethical aspects of this study have been approved by the HREC of the University of Sydney [2016/288]. As part of this process, we have agreed to carry out the study according to the National Statement on Ethical Conduct in Human Research (2007). This statement has been developed to protect people who agree to take part in research studies.

If you are concerned about the way this study is being conducted or you wish to make a complaint to someone independent from the study, please contact the university using the details outlined below. Please quote the study title and protocol number.

The Manager, Ethics Administration, University of Sydney:

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