Endometriosis Care Pathways for Autistic and Non-Autistic Women in Alberta: Barriers and Opportunities

Summary

The goal of this project is to understand what endometriosis diagnostic care pathways look like for women in Alberta. We’re looking at the experiences of both Autistic and non-autistic women. This study will happen in group discussions, either in person or on Zoom – whichever you prefer. By hearing from women with different experiences, we hope to understand endometriosis care pathways better and positively impact healthcare practices and policies. The focus groups will be 1 hour in length, and participants will be compensated with a $30 gift card for their time. People must choose to be part of the study. No one else can make people agree to the focus group if they do not want to.

Eligibility

Currently recruiting participants: Yes

Eligible gender: Transgender, Other, Female

Eligible ages: 18 to 100

Accepts healthy participants: Yes

Inclusion criteria:

For the Autistic/Neurodivergent sample:
1. Must be above 18 years old
2. Must be English-speaking
3. Must self-identify as a woman (non-binary, gender-queer, gender-fluid, or other identifying individuals also accepted if labelled as female at birth)
4. Must have been surgically diagnosed with endometriosis in Alberta
5. Must currently live in Alberta
6. Must self-identify or have been diagnosed as neurodivergent (including individuals who identify as: Autistic, ADHD, having dys-lexcia/calculia/graphia/orthographia, and other innate neurodivergences; please send us an email if you are unsure if you qualify)

For the non-autistic/Neurotypical sample:
1. Must be above 18 years old
2. Must self-identify as a woman (non-binary, gender-queer, gender-fluid, or other identifying individuals also accepted if labelled as female at birth)
3. Must have been surgically diagnosed with endometriosis in Alberta
4. Must currently live in Alberta
5. Must not self-identify or have been diagnosed as neurodivergent

Exclusion criteria:

You are ineligible if:
1. You are under 18 years old
2. You are not English-speaking
3. You do not self-identify as a woman (exception is: non-binary, gender-queer, gender-fluid, or other identifying individuals also accepted if labelled as female at birth)
4. You have not been surgically diagnosed OR you have been surgically diagnosed but it did not occur in Alberta
5. You do not live in Alberta

Participate

Fill out the following form if you want to participate in this research

Method of contact

Collection of personal information
Your personal information is collected under the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If you have any questions about the collection or use of this information, please visit our Access to Information page.

Additional information

Contact information

If you are interested in participating in this study or want more information about it, please contact Alan Martino directly: alan.martino@ucalgary.ca

Principal investigator:

Alan Martino

Clinical trial:

No

REB-ID:

REB24-0076