Exploring care experiences and expectations in transgender and gender diverse individuals living with inflammatory bowel disease in Canada

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Researcher bios and how their research backgrounds relate to this study

Noelle Rohatinsky (she/her), lives with Crohn's disease, and is an independent, mid-career researcher who has experience in planning, implementing, and completing local, provincial, and national IBD-focused studies. Noelle will be mentored by all members of the multidisciplinary research team and will learn with and from them during this project. Dr. Laura Targownik (she/her) is an expert clinician and researcher in the field of IBD and equity, diversity, and inclusivity, and is one of the few researchers in the world exploring the experiences of transgender and gender diverse persons with gastrointestinal disease. As a person with lived experience, Taylor Stocks (they/he) will share their experiences and expertise as a transgender individual living with severe ulcerative colitis in accessing gastroenterology care and guide and support the team to provide an inclusive research environment. Barbara Currie (she/her) is a masters-prepared nurse practitioner who cares for individuals with IBD who are transgender and gender diverse. She also has experience with conducting and participating in IBD-related research and is committed to building a clinical environment that is inclusive for all.

Purpose of this research project

Inflammatory bowel disease (IBD) is a lifelong chronic inflammatory condition that requires ongoing interactions with the healthcare system. However, not everyone may feel safe accessing and receiving IBD-related care or communicating openly with their provider. One such marginalized group of individuals who may not feel comfortable are those who identify as transgender or gender diverse. The purpose of this multidisciplinary, patient-oriented, pilot qualitative study is to explore care experiences and expectations in transgender and gender diverse individuals who live with IBD. Using a variety of recruitment strategies, individuals who are Canadian adults 18 years or older; are diagnosed with Crohn’s disease or ulcerative colitis; and who self-identify as transgender or gender diverse will be invited to participate. We aim to include 20 individuals. Individuals will have an opportunity to be interviewed either individually or in a group setting. Data will be analyzed using thematic analysis and key themes will be identified. Findings will be shared through traditional peer reviewed outlets and participants will also be asked for their suggestions for strategies to share findings with other stakeholder groups such as providers, community agencies, and health authorities. The goal of this project is to allow individuals a supportive place to share their experiences regarding accessing and receiving IBD-related care and to understand what strategies would encourage a comfortable and safe IBD-related healthcare space for individuals who are transgender or gender diverse.

How this research will help LGBT2SQ people and communities

The goal of this project is to allow individuals a supportive place to share their experiences regarding accessing and receiving IBD-related care and to understand what strategies would encourage a comfortable and safe IBD-related healthcare space for individuals who are transgender or gender diverse. Acknowledging, investigating, and understanding the care experiences of transgender and gender diverse individuals with IBD is necessary to begin to create healthcare system change so that IBD-related care can be inclusive, supportive, and meet the needs of all individuals. While there is literature on the care experiences of persons living with IBD broadly, perspectives on the experiences and expectations of accessing and receiving ongoing care, and recommendations for service delivery to transgender and gender diverse individuals living with IBD are missing from the literature. This project aims to begin to address these identified gaps.

Participants

Canadian adults 18 years or older; who are diagnosed with Crohn’s disease or ulcerative colitis; and who self-identify as transgender or gender diverse are able to participate.

Compensation

$25 gift card

Mitigation measures

First, interviews will be conducted by 2 individuals who are transgender or gender diverse living with IBD to create a safe, accepting space for knowledge sharing. Both individuals have interview experience and have completed TCPS ethics modules and the CIHR sex and gender online training. Within the consent form, there is also a link to a support resource [Wellness Together Canada (available 24/7), at 1-866-585-0445 or visit: https://www.wellnesstogether.ca/en-ca/].

Promoting the Study

We are recruiting through the Crohn’s and Colitis Canada (CCC) website; Canadian IBD Nurses (CANIBD) network; CANIBD, CCC, and 2SLGBTQ+ social media groups and patient advocacy groups; co-investigator gastroenterology offices; gastroenterology provider and person with lived experience personal and professional networks; and Canadian 2SLGBTQ+ health organizations.