The following includes the survey and interview questions used for my dissertation research on endometriosis and social media. These questions have been provided for anyone who wishes to replicate the study.

The survey was formatted as a Google Survey and participants had the option to skip questions. The interviews were done over zoom in a semi-structured format, where the following questions were asked and used to think of additional questions.  

The project was approved by Concordia University’s ethics board and done under the supervision of Dr. Sandra Gabriele.

SURVEY QUESTIONS

Introduction to the survey.

1. Are you over 18 years old?
   1. (if no, cannot continue)
2. Do you have endometriosis? If not, what brings you to this group?

IF YES:

1. What does endometriosis mean for you? Has this changed over time?
2. Why do you use social media in relation to endometriosis? What brought you to these spaces?

(a) What social media spaces do you use in regards to chronic pain?

(b). What, if any, is/are the main symptom(s) you seek out help or support for on social media? (Can check multiple options).

1. Pain (abdominal, genital, or other)
   1. Difficulty with intercourse
   1. Diarrhea, Constipation, Bloating
   1. Excessive or abnormal bleeding
   1. Infertility
   1. Worsening symptoms
   1. Isolation / Loneliness / Feeling misunderstood
   1. Difficulty with birth control or other medications
   1. Chest pain / cough / breathlessness
   1. Fatigue
   1. Difficulty leaving the house
   1. Other (please specify)

(c). Did you find any support or help online regarding these issues?

• Did social media expose you to any other or new pain management treatments/tools? Did it teach you anything new about endometriosis?
• Overall, have you found social media helpful in managing or living with your endometriosis? How so?
• Have you found these social media spaces difficult to engage with in any way? (ex: overwhelming, frustrating, toxic environments, lack of information, etc.)
• When were you diagnosed with endometriosis (if you are diagnosed) and how long had you been experiencing symptoms before getting a diagnosis?
• Where did you first hear about endometriosis?
• Did social media play any role in getting your diagnosis or learning about the illness?
• Have you made any lasting connections with other people through endometriosis-related social media groups?
• What are the main things you use these social media spaces for? (You can select more than one option).
  • Describing your experiences
  • Putting your pain in your own words
  • Feeling less isolated
  • Offering support
  • Getting support
  • Sharing medical advice
  • Getting medical advice
  • Raising awareness about endometriosis
  • Other… (please explain)
• Is there one post in particular that you read or have made that was particularly important/significant for you? Why?
• Have you learned anything about endometriosis through these social media groups that you did not hear about elsewhere?
• What social media platforms do you most use in regards to chronic pain? Why did you choose these?
• How often do you post?
• How often do you check or read other people’s posts?
• Do you find these social media spaces to be beneficial for folks with endometriosis? Please elaborate.
• Has your participation in these spaces changed how you feel about or experience your symptoms or pain related to endometriosis?
• How would you describe the way you “relate” to other people in endometriosis social media groups?
• Have you made connections with other people with endometriosis through your participation in endometriosis-related social media spaces?
• Do you have recommendations for any other people I should interview about this topic?
• Do you have any concerns around your data or privacy when posting about endometriosis in these spaces?
• Would you be interested in being contacted for further interviewing?
  • Yes/ No (provide email if yes)
• Would you like to have the final research shared with you?
  • Yes/No (provide email if yes)
• If you are interested in hearing about this research later (ie: reading the dissertation or any related publications), please include your email here:

INTERVIEW QUESTIONS

1. Did you already complete a survey? If so, what is your email, so I can make sure not to duplicate your answers?
2. What does endometriosis mean for you? Has this changed over time?
3. Why do you use social media in relation to endometriosis? What brought you to these spaces?
4. (a) What social media spaces do you use in regards to chronic pain?

(b). What, if any, is/are the main symptom(s) you seek out help or support for on social media? (If they have difficulty coming up with one, I offer these suggestions, but they should feel free to say multiples or other things.)

• Pain (abdominal, genital, or other)
  • Difficulty with intercourse
  • Diarrhea, Constipation, Bloating
  • Excessive or abnormal bleeding
  • Infertility
  • Worsening symptoms
  • Isolation / Loneliness / Feeling misunderstood
  • Difficulty with birth control or other medications
  • Chest pain / cough / breathlessness
  • Fatigue
  • Difficulty leaving the house
  • Other (please specify)

(c). Did you find any support or help online regarding these issues?

• Did social media expose you to any other or new pain management treatments/tools? Did it teach you anything new about endometriosis?
• Overall, have you found social media helpful in managing or living with your endometriosis? How so?
• Have you found these social media spaces difficult to engage with in any way? (ex: overwhelming, frustrating, toxic environments, lack of information, etc.)
• When were you diagnosed with endometriosis (if you are diagnosed) and how long had you been experiencing symptoms before getting a diagnosis?
• Where did you first hear about endometriosis?
• Did social media play any role in getting your diagnosis or learning about the illness?
• Have you made any lasting connections with other people through endometriosis-related social media groups?
• What are the main things you use these social media spaces for? (If they have difficulty saying one, here are some suggestions, but they may mention others)
  • Describing your experiences
  • Putting your pain in your own words
  • Feeling less isolated
  • Offering support
  • Getting support
  • Sharing medical advice
  • Receiving medical advice
  • Raising awareness about endometriosis
  • Other… (please explain)
• Is there one post in particular that you read or have made that was particularly important/significant for you? Why?
• Have you learned anything about endometriosis through these social media groups that you did not hear about elsewhere?
• What social media platforms do you most use in regards to chronic pain? Why did you choose these?
• How often do you post?
• How often do you check or read other people’s posts?
• Do you find these social media spaces to be beneficial for folks with endometriosis? Please elaborate.
• Has your participation in these spaces changed how you feel about or experience your symptoms or pain related to endometriosis?
• How would you describe the way you “relate” to other people in endometriosis social media groups?
• Have you made connections with other people with endometriosis through your participation in endometriosis-related social media spaces?
• Do you have any concerns around your data or privacy when posting about endometriosis in these spaces?

For Instagram users:

1. Is the fact that Instagram focuses on images and visualizations important to your endometriosis-related posts?
2. Why do you post using endometriosis-related hashtags?
3. Are your digital practices more something you do for yourself or something you do to share or participate in a community? Or both?

For administrators of a digital endometriosis space:

1. What was the inspiration behind creating this page/group/space?
2. What challenges have you experienced along the way and how have you managed them? (ex: moderation issues, admin labour, etc.)
3. What techniques have you learned for maintaining this kind of space?
4. What else have you learned through this journey that you feel might be important for a project on online endometriosis communities?

• Do you consider yourself someone who does advocacy or activism about endometriosis? (If yes, ask below questions.)

For those who identify as doing advocacy or activism about endometriosis?

• Why did you choose the platform(s) as a medium for your activism/advocacy?

• What was your reasoning behind wanting to do activist work in regards to endometriosis?

• Why did you decide to do this work on social media?
• What challenges (if any) have you faced in doing this work? (ex: negative attention, trolls, etc.)

Final Question:

• Do you have recommendations for any other people I should interview about this topic?