Explanatory Statement
Project: Measuring the Daily Stressors of Young People Affected by Huntington’s Disease
Chief Investigator: Professor Julie Stout
Co-Investigators: Dr Kelly Atkins
Email: Kelly.atkins@monash.edu
Phone: 9905 1918
Student Researcher: Mr Jaron Mak
Email: jmak0007@student.monash.edu
You are invited to take part in this study. Please read this Explanatory Statement in full before deciding whether or not to participate in this research. If you would like further information about any part of this project, you are encouraged to contact the researchers via the phone numbers or email addresses listed above.
What does the research involve?
This study is examining what parts of daily life are stressful for young people affected by HD. To understand this, we are asking young people from HD families to share their thoughts on the aspects of their life that are stressful or concerning, such as their family and social relationships, and daily functioning.
As part of this research, you will complete an online survey about what parts of your life, if any, cause you to feel stress. In this survey we will also ask for your experience on a list of items that young people affected by HD may find stressful. We expect the survey will take no more than 30 minutes to complete. Your responses will help us design a questionnaire to measure stress in young people affected by HD.
Why were you chosen for this research?
You have been invited to participate in this research because you came across advertisements about this research on HD community pages or social media platforms.
You are eligible to participate if you are:
- Fluent in English
- Between 18 - 35 years old; and,
- Have a family member (e.g., parent, sibling, grandparents etc.) at risk of, or with, HD; and/or,
- Are at risk of HD yourself; or
- Have had genetic testing and have tested positive or negative to the gene expansion that causes HD
Consenting to participate in the project and withdrawing from the research
You are viewing this explanatory statement because you expressed interest in participating in this research. If you wish to participate in this study, follow the prompts at the end of this statement to complete the consent form and begin the online survey.
Your participation in this study is entirely voluntary and you do not have to participate in this research. If you do decide you wish to participate and provide consent, you may leave the study at any stage during the questionnaire with no consequences. You may leave blank any questions that you do not wish to answer and you are free to decline taking part in any portion of this study without providing any reason.
Possible Benefits and Risks to Participants
There are no direct personal benefits from participating in this study, however your participation is greatly appreciated as it contributes to the growing body of research in HD.
We do not expect any serious risks from participating in this study. You may experience some mild fatigue while responding to the online survey. To prevent this, we have limited the number of questions and expect that it will only take you 30 minutes to complete. Some questions in the survey may be upsetting. If any of the questions within this survey cause you to feel upset or distressed, please let a member of the research team know. We can assist you to access services that may be of assistance.
Questions within this survey are voluntary. If you do not wish to answer one or any of the questions simply move onto the next one.
Payment
There is no payment involved in completing this study, as doing so is not expected to incur any costs.
Confidentiality and Use of Data
The data collected for this study is part of an honours thesis. Findings from this study may be published in academic journals and presented at academic conferences.
Your personal information and responses to surveys will be kept strictly confidential and only researchers involved in this study will have access to it. The survey platform used to host this online questionnaire is provided through Monash University, and appropriate cyber security has been implemented to ensure online responses remain confidential. If the chief researchers cease to be actively involved in research at Monash University, responsibility for the privacy of personal information stored on the premises will be formally handed over to another researcher. A report of this study may be submitted for publication, but data will only be published in a group format and individual participants will not be identifiable in such a report.
Storage of Data
Data collected will be stored in accordance with Monash University regulations and kept on University systems for a period of 5 years after collection. After this time, electronic files will be securely deleted.
Use of Data for Other Purposes
Your individual data will not be used for any purposes without your direct, prior consent.
Results and Incidental Findings
Participants should contact co-investigator Kelly Atkins via telephone (ph: 9905 1918) or email (Kelly.atkins@monash.edu), if they wish to access aggregate results at the conclusion of the study.
Complaints
Should you have any concern or complaints about the conduct of the project, you are welcome to contact the Executive Officer, Monash University Human Research Ethics (MUHREC):
Executive Officer
Monash University Human Research Ethics Committee (MUHREC)
Room 111, Building 3e
Research Office
Monash University VIC 3800
Tel: +61 3 9905 2052 Email: muhrec@monash.edu Fax: +61 3 9905 3831
Thank you,
Julie Stout, Kelly Atkins, Jaron Mak