Summary
The TRANS Project is a community-based study that is piloting and assessing the effectiveness of two peer health navigators for people who are trans and gender diverse (TGD) in Saskatchewan. Each navigator will provide support to individuals who are TGD in discovering which healthcare services are right for them and then in accessing those services. At the same time, the navigators will help healthcare providers and organizations to develop culturally safe spaces for people who are TGD by supplying resources and training opportunities. Our peer navigators support all of Saskatchewan, with our Saskatoon-based navigator also guiding the northern half of the province and our Regina-based navigator guiding the southern half of the province.
The TRANS Project is in partnership with the Saskatchewan Trans Health Coalition and community-based organization partners, UR Pride and OUTSaskatoon. It is funded by a Saskatchewan Health Research Foundation (SHRF) and Saskatchewan Centre for Patient-Oriented Research (SCPOR) Sprout Grant.
History
People who are TGD in Saskatchewan have slowly been gaining visibility through the work of grassroots activists in combination with a cultural shift toward recognizing human rights. Despite the Saskatchewan Human Rights Code being updated in 2014 to prohibit discrimination based on gender identity or gender expression (Saskatchewan Human Rights Commission), those who are TGD report significant barriers to accessing healthcare. A recent national study indicates that 45% of Canadian trans people reported having an unmet health need in the previous year, and 12% reported avoiding emergency care when needed during the same period (Trans PULSE Canada). In addition to broader health disparities, support for transition related medical care in Saskatchewan lags far behind both international and Canadian current best practices. For example, Saskatchewan is one of the few provinces that still requires referral letters from two physicians, one of whom must be a psychiatrist, in order to access certain transition-related surgeries through provincial health insurance. This practice is not aligned with the World Professional Association for Transgender Health (WPATH) Standards of Care {WPATH}.
2018 – A Year of Planning
The TRANS Project began in January of 2018 when The Saskatchewan Trans Health Coalition (STHC) recognized these health inequalities for Saskatchewan’s TGD population. As the STHC is made-up of people who are TGD, representatives from key 2SLGBTQIA+ community-based service organizations, and healthcare providers who work with TGD clients, they felt strongly that an ongoing, comprehensive research study was a key step in meeting these needs. Early in 2018, members of the Coalition invited Drs. Clark and Madill (co-principal investigators) to work with the STHC to realize their research aspirations.
Due to the experiences of many STHC members “falling through the cracks” of Saskatchewan’s healthcare system, the team determined that implementing and evaluating healthcare client navigators for people who are TGD would have a direct and significant impact on people who are TGD in our province. 2018 was a year of serious planning for us. It took most of the first year working together to build the research team and design the study. It was essential to take this time to ensure that people with the expertise required to effectively implement the Coalition’s research ideas were recruited and had time to fully engage and integrate with the group. During this year the TRANS Project began to take shape; even though we had just begun, our seeds had been planted.
2019 – A Year of Funding and Growth
In order to develop the navigator project and build the research team we needed funding. Through the grants provided by the Regina Public Interest Research Group and the Saskatchewan Health Authority (SHA) Research Department, we were able to hire two research assistants. These assistants reviewed the literature on healthcare access and “patient navigation” for people who are TGD in Saskatchewan, finding that there was a lack of information specific to our province. Following this, the research assistants completed an environmental scan of existing Canadian navigator programs for people who are TGD. This review found that while there are navigator programs in many other provinces, none have conducted program assessments.
Equipped with the understanding of the absence of research in these areas, we decided to focus our efforts on securing funding through The SCOPR Sprout Grant as it most closely aligned with the research team’s person-oriented and community-driven philosophy.
Meanwhile, we met many wonderful people who wanted to help bring this project to actualization. Our team has grown to over 20 researchers, including community members, decision-makers from the Saskatchewan Health Authority (SHA) and Saskatchewan’s Ministry of Health, and various healthcare disciplines (family medicine, psychiatry, nursing, physical and occupational therapy). We also partnered with key 2SLGBTQ+ organizations from across the province, such as OUTSaskatoon, UR Pride and TransSask Support Services (Prince Albert) so that we could connect our team with their networks and extend our reach to all parts of the province. As we brought more people into our project, the diversity of their knowledge and lived experiences only served to deepen and enrich our team. It is important to us that people with lived experience are represented in all research team roles so as to bring the most important perspective to the entire project.
2020 – A Year of Ethics
In the spring of 2020, we had received the funding required to carry out the project and had planned our course of action. Our next step was to apply for ethics approval through the University of Saskatchewan's Behavioural Research Ethics Board. Through a series of careful discussions and adjustments to our research plans we refined the specifics of the navigator role, data collection methods, and our knowledge translation plan. These discussions included a variety of research team members to ensure that the voices of team members with lived experience were (and continue to be) centred in all our discussions and decisions. In December 2020 we obtained approval from the Ethics Board and our active community work could begin.
2021 – A Year of Implementation
We are now in 2021 and are proud that our research has finally started to sprout. Despite the difficulties posed by the COVID-19 pandemic, we were able to hire our two peer navigators, Elijah (Saskatoon and Northern SK) and Ken (Regina and Southern SK), in March 2021. They are being hosted and mentored by the community organizations OUTSaskatoon and UR Pride, who continue to play an active role in supporting our navigators so they can in turn support Saskatchewan’s TGD community. By June the navigators were fully active, providing assistance to people who are TGD and their support people, as well as education to healthcare providers and the general public. As we continue to move forward, please come visit us again for more updates on the progress of our project.
Importance
The TRANS project is important in many ways. Its most immediate impact is improving the quality and cultural-safety of healthcare practices in Saskatchewan for TGD people. As these healthcare practices improve, TGD people gain access to increasing benefits in social support, wellbeing, and health care; therefore, over the longer-term their health impacts will decrease. Less visible effects of this study include:
- Expanding research capacity in the TGD community
- Informing decision making in healthcare education
- Data will inform policy makers in Saskatchewan (and throughout North America) on
Healthcare and public policy/programs
- Supplying data to community-based organizations for strategizing advocacy efforts related to healthcare access and respectful care
- Enabling the streamlining of clinical care and planning of healthcare services through findings
- Increasing public awareness of the healthcare issues faced by people who are TGD
- Providing a pilot study to guide potential future projects by academics in healthcare, psychology, and public policy
As this is the first study provincially to pilot and assess the effectiveness of peer navigators with those who are TGD, we are furthering the understanding of what is required of our healthcare system via direct evidence about the value client navigators provide for people who are TGD. More importantly, those within the TGD will benefit from needed attention to and research about their health and health care needs.
Ongoing Outcomes
- Testing the feasibility of peer navigators through the numbers of contacts people who are TGD and healthcare providers had with the navigator
- Assessing the effectiveness of the navigators on access to and satisfaction with healthcare services
- Determining the effect of the navigators on healthcare practices and service delivery
- Developing public awareness through outreach
Presenting a policy paper to the Ministry of Health
- Continuing education for healthcare professionals
- Informing researchers/academics and healthcare educators through publications and presentation. Process
This patient-oriented study will employ mixed qualitative and quantitative methods. Two peer navigators with lived experience as people who are TGD will be employed for a period of one year, with one navigator based in Saskatoon and the other in Regina.
Quantitative data collection will include:
- Records of how many individuals and whether they are TGD, support people, or healthcare providers, contact the navigators
- Which healthcare services and specialist referrals were TGD people accessed or avoided
- The number and type of training provided to healthcare professionals
Qualitative methods will allow a more comprehensive assessment of the quality of these navigator contacts and the effectiveness of the role. These include:
- Navigators complete daily activity logs of their activities, as well as a journal of their thoughts and impressions for narrative analysis.
- Brief, online assessments by clients and healthcare providers of navigator services provided
- Focus groups with TGD people to provide a baseline understanding of what it is like to access or try to access healthcare services
- At the end of the year, in-depth, semi-structured interviews will be held with both people who are TGD and healthcare providers who have used the service; the transcripts will be analysed to gain an understanding of their experiences
Ongoing Activities
- Analyzing data from baseline focus groups with people who are TGD on experiences accessing or trying to access healthcare in Saskatchewan
- Conducting post-service interviews with clients and healthcare providers who worked with the navigators
- Analyzing data on healthcare experiences and navigator effectiveness through brief post-navigator service surveys
- Narrative analysis of navigators’ anonymized journal entries on their reflections on their work
- Providing peer health navigators to assist TGD people in accessing health care and supports, and to aid healthcare providers in creating culturally safe spaces for their TGD clients
- Public outreach through website posts, media releases, presentations, and public engagement