PARTICIPANT INFORMATION SHEET AND CONSENT FORM
An Exploration of Endometriosis, Body Image, and Eating Disorder RiskChief Investigator
Dr Mia Pellizzer
College of Education, Psychology and Social Work
Flinders University
Tel: 8201 3522
Email: mia.pellizzer@flinders.edu.au
Co-Investigator
Professor Tracey Wade
College of Education, Psychology and Social Work
Flinders University
Tel: 8201 3877
Email: tracey.wade@flinders.edu.au
Description of the study
The aim of this research is to survey people living with endometriosis and ask questions about their body image, general wellbeing, and eating disorder symptoms. This project is supported by Flinders University, College of Education, Psychology and Social Work. If you have endometriosis, are living in Australia, and over the age of 18, you are eligible to participate.
Purpose of the study
Endometriosis is a very common gynaecological condition that affects 1 in 9 women and those assigned female at birth. Currently, there is very limited understanding about how people with endometriosis feel about their bodies and whether this is related to increased risk of having an eating disorder or eating disorder symptoms.
Benefits of the study
The questionnaire data will benefit the field of psychology by providing important insights into the impact endometriosis has on body image, eating disorder risk, and wellbeing. Body image has scarcely been studied in this population and to our knowledge no study has evaluated eating disorder symptoms. Given the common occurrence of endometriosis and preliminary data available on negative body image, this is an important area of research and will contribute to the development of future work in the area such as body image intervention studies.
Participant involvement and potential risks
If you agree to participate in the research study, you will be asked to answer questions about your body image, eating, mood, self-criticism, and basic demographic data.
Participation should take no more than 15 minutes (at most) and participation is entirely voluntary.
The researchers do not expect the questions to cause any harm or discomfort to you. However, if you experience feelings of distress as a result of participation in this study (for instance, answering questions about your mental health), please let the research team know immediately. You can also contact the following services for support:
Lifeline – 13 11 14, www.lifeline.org.au (24 hour crisis support when feeling emotional distress).
Beyond Blue – 1300 22 4636, www.beyondblue.org.au (Support for mental health)
Butterfly Foundation – 1800 334 673 www.butterfly.org.au (Support for eating disorders and body image issues).
Withdrawal Rights
You may, without any penalty, decline to take part in this research study. To withdraw, refuse to answer any of the questions or close the internet browser and leave the online survey. Any data collected up to the point of your withdrawal will be securely destroyed.
Confidentiality and Privacy
Only researchers listed on this form have access to the individual information provided by you. Privacy and confidentiality will be assured at all times. The research outcomes may be presented at conferences, written up for publication or used for other research purposes as described in this information form. However, the privacy and confidentiality of individuals will be protected at all times. You will not be named, and your individual information will not be identifiable in any research products without your explicit consent.
We intend to load deidentified data (that is, scores only without any identifying information) on the Open Science Framework (OSF) for other researchers to use in future meta-analyses. Other than this, no data, including identifiable, non-identifiable and de-identified datasets, will be shared or used in future research projects without your explicit consent.
Data Storage
The information collected will be stored securely on a password protected Flinders University server throughout the study (Qualtrics). Any identifiable data will be de-identified for data storage purposes unless indicated otherwise. All data will be securely stored online at Flinders University for five years after publication of the results. Following the required data storage period, all data will be securely destroyed according to university protocols.
How will I receive feedback?
On project completion, a short summary of the outcomes published on Flinders University’s website. If you would like a summary emailed to you, you will be asked to provide your email address at the end of the questionnaire (this is optional and email addresses will only be used for this purpose. As with data collected, email addresses will be subject to confidentiality and privacy and will be stored securely).
Ethics Committee Approval
The project has been approved by Flinders University’s Human Research Ethics Committee (5585).
Queries and Concerns
Queries or concerns regarding the research can be directed to the research team. If you have any complaints or reservations about the ethical conduct of this study, you may contact the Flinders University’s Research Ethics & Compliance Office team via telephone 08 8201 2543 or email human.researchethics@flinders.edu.au.
Thank you for taking the time to read this information sheet.. If you accept our invitation to be involved, please read the Consent Form on the next page, click ‘I Consent’ and provide your name and date (this information is for the purpose of providing consent only and will not be used in any other way).