The psychological and social impact of endometriosis

Plain Language Information Statement (PLIS)

To Participant:

This Plain Language Information Statement contains information about the research project. Its purpose is to explain to you the procedures involved in this project so that you can make a fully informed decision regarding your participation.

Importantly, please be advised that your participation in the study is completely voluntary and there will be no collection of any identifying information. Should you wish to withdraw at any stage, or to withdraw any unprocessed data you have supplied, you are free to do so without prejudice or consequence. However, it should be noted that, in practice, this is not possible once the data has been collected. Consent is implied by submission of the survey. Once you have read this required material, you can then be invited to commence the survey by clicking a button.

Why is this research being conducted?
First and foremost, understanding the experiences of women with endometriosis has been recognised as being crucial for developing more effective and extensive courses of treatment. Currently, there is a lack of research examining the interaction of factors such as body image and functioning, support, subjective wellbeing, pain, coping strategies and mindfulness traits and their impact on the quality of life for endometriosis patients. The study will particularly focus on these discussed factors.

Why have I been approached?
The target population of participants in the study includes women aged over 18 with endometriosis. The researchers are interested in learning about the diverse experiences of women from a wide range of ages.

Possible benefits
Participation in the study may contribute to existing knowledge of the condition and may potentially help to develop more effective awareness-raising campaigns and support/treatment options for endometriosis.

Possible risks
There is minimal risk in participating in the study. However, some questions in the survey may cause psychological distress and discomfort, particularly questions relating to living with endometriosis. If you feel that you may become distressed as a result of discussing your endometriosis, we encourage you to consider not participating in the study.

Should you have any concerns as a consequence of participating in the study, you can seek help from support services such as https://www.endometriosisaustralia.org/support-groups, Beyond Blue (Phone: 1300 244 636) and Lifeline (Phone: 13 11 14).

Who can I contact if I have any questions?
If you have any questions regarding the research project, please contact one of the researchers. If you have any complaints about any aspect of the project, the way it is being conducted or any questions about your rights as a research participant, you are welcome to contact the Secretary to the Ethics Committee whose contact details appear at the end of this form.

If I agree to participate, what will I need to do?
Should you agree to participate, you will be asked to complete an online questionnaire providing personal information relating to your endometriosis diagnosis (e.g., "How many years ago did you first experience symptoms of endometriosis?"). Some of the questions will ask you to provide your response in number format, such as rating the level of truth of the statement, "I avoid putting myself in situations where my pain might increase" from X to Y, whilst other questions will be open-ended and ask you to provide a written response in the textbox provided, such as "How has endometriosis affected your future planning?". Demographic questions will be asked, e.g., age, gender, and social background, with the main part of the questionnaire asking about your experience of pain, coping strategies, mindfulness traits, mental health, subjective wellbeing, body image, and body functioning as well as medical, social, and workplace support. The survey will take approximately 25 minutes to complete.

How do I get started?
If you would like to participate, please indicate that you have read and understood this information by clicking the “Next” button below this form. The consent form will appear on the following page and, after providing consent, you will be directed to the questionnaire itself.

What will happen to the information I provide?
As a participant, the data you provide will be secured at the Cairnmillar Institute on a password- protected computer, where only the Principal Researchers and Student Researchers will have access to the data. It is also important to note that the information collected will be presented as theses and perhaps also in journal articles or as conference papers. Please be assured that there will be no identifying information included in the collection of data. The data will be destroyed 5 years after publication of the thesis or other papers which arise from the research conducted.

This study has been approved by the Human Research Ethics Committee at The Cairnmillar Institute and will comply with the National Statement on Ethical Conduct in Human Research (National Health and Medical Research Council of Australia, 2007).

If you would like further information regarding this study, please contact the research supervisor or myself at any time. All contact details can be found below.

Researcher Contact details: theendostudy@gmail.com

Principal Researcher
Dr RoseAnne Misajon
391-393 Tooronga Road
Hawthorn East VIC 3123
Phone: 03 9811 4634
Email: roseannae.misajon@cairnmillar.edu.au

Principal Researcher
Dr Jacquie Mills
391-393 Tooronga Road
Hawthorn East VIC 3123
Phone: 03 9811 4631
Email: jacquie.mills@cairnmillar.edu.au

Student Researcher
Ms ChellChih (Cece) Shu
391-393 Tooronga Road
Hawthorn East VIC 3123
Email: 11332@cairnmillar.edu.au

Student Researcher
Ms Vasiliki Kordos
391-393 Tooronga Road
Hawthorn East VIC 3123
Email: 11338@cairnmillar.edu.au

Student Researcher
Ms Ruvi Fernando
391-393 Tooronga Road
Hawthorn East VIC 3123
Email: 11334@cairnmillar.edu.au

Secretary to the HREC
The Cairnmillar Institute
391-393 Tooronga Road
Hawthorn East VIC 3123
Phone: 03 9813 3400
Email: hrec@cairnmillar.edu.au