You can also read this in our Participant Information Sheet.
Who is eligible?
Anyone in Australia 16 years of age or over who has or has had a diagnosis of an eating disorder and/or who has or has had an experience of body image concern or eating difficulties with eating, body shape/weight or exercise concerns and/or pre-existing or co-occurring mental health illnesses is eligible to participate.
What will the study involve?
This survey will be distributed in two parts; 1. a baseline survey to collect basic demographic data; and 2. two months upon completing the baseline survey, you will receive a follow-up survey which will be distributed every two months for approximately two years, although this length of time may be reduced, depending on the ongoing impact of the pandemic.
The baseline survey should take approximately 15-20 minutes to complete. You will be asked to provide information on your demographics (e.g. age, gender, education), family and household circumstances (e.g. living situation, employment status), experience with an eating disorder and COVID-19, experience with access to treatment, as well as some measures of mental wellbeing (e.g. loneliness, depression, anxiety, stress). Upon consenting to the survey, you will be allocated a study identification number (Study ID) which will link your survey responses at each time point, and the rest of your information will be deidentified, with your name and contact information removed and only used to send you the invitation for follow-up surveys. Completion of this survey will be considered ‘implied consent’. Your participation in this survey is voluntary and you can withdraw at any time.
Bi-monthly Follow Up Survey
The bi-monthly survey is shorter and will be sent every two months. Each survey should take approximately 10 minutes to complete. For each two-month follow-up survey, we will send you an email invitation at the appropriate time, and up to two reminder emails within that month. You can choose at the time whether you wish to complete the survey or not. Upon consenting to the survey, you will be allocated a Study ID which will link your survey responses at each time point. You can ask to be no longer contacted about these follow-up surveys at any time.
What are the risks?
We do not anticipate any discomforts or risks associated with participation in this study as this is a low and negligible risk study. If at any time you feel distressed, you can call the Butterfly Foundation at 1800 33 4673 to get support from an eating disorder specialist, the Mental Health Access Line for NSW at 1800 011 511, LifeLine at 13 11 14 for crisis support or Beyond Blue at 1300 22 4636.
What are the benefits?
There will be no direct benefits of participating in the research. We acknowledge the time and effort it takes to complete the survey. If you are able to complete the survey within three weeks, you will go into a draw to win 1 of 2 online shopping gift cards each worth $100, the draw date will be specified in the email invites. Draws will take place upon completion of the baseline survey and upon completion of each of the two-month follow-up surveys. You will be notified by the email you have provided if you are a winner.
We hope this study will evaluate the impact of COVID-19 pandemic on the experience with eating disorders, changes in eating disorder symptoms over time and access and changes to treatment delivery within this sector.
Are there any costs?
Participating in this study will not cost you anything, nor will you be paid. However, if you are able to complete the survey within three weeks you will go into a draw to win 1 of 2 online shopping gift cards each worth $100.
How will confidentiality be maintained?
All the information collected from you for the study will be treated confidentially, and only the researcher and the co-researchers will have access to it. The study results may be presented at a conference or in a scientific publication, but individual participants will not be identifiable in such a presentation.
What will happen to the data?
The deidentified data collected will be stored in a secure network data management system (REDCap) compliant with the University of Sydney Research Data Management Policy for 7 years and then all files will be permanently destroyed in accordance with University policy. The data will be identifiable only during the data linkage action to link the baseline and follow-up measures. As part of our data management plan, the identity of each participant (including their registration email address and mobile number) is maintained in one password protected spreadsheet with each participant given a Study ID. The data will then be entered in the main data set identified by their Study ID.
Can I withdraw from the study?
Participation in this study is entirely voluntary. You do not have to take part in it. If you do take part, you can contact us any time up until one month after each survey completion and your data will be withdrawn. After this period, all data will be locked. You can ask to be no longer contacted about the follow-up surveys at any time. Your responses, or your decision not to participate in the study, will not impact your current or future relationship with the researchers or anyone else from the InsideOut Institute for Eating Disorders.
Ethics Approval and Complaints
This study has been approved by the Human Ethics Review Committee (RPA Hospital Zone) of the Sydney Local Health District. Any person with concerns or complaints about the conduct of this study should contact the RPA Executive Officer (02) 9515 6772 and quote protocol number X20-0181.
Who can I contact for further information?
This study is being conducted within this institution by Dr Jane Miskovic-Wheatley, Research Stream Lead at InsideOut Institute for Eating Disorders, housed in the Boden Collaboration for Obesity, Nutrition, Exercise and Eating Disorders at the University of Sydney. If you would like to know more, or you wish to withdraw from this study at any stage, please contact Research Officer Eyza Koreshe on 02 8627 5690 or by email at firstname.lastname@example.org