We are a small group of researchers who have come together as part of a research study exploring life-cycle healthcare among Canadians experiencing diverse (difference in) sex development (DSD), also known as intersex variations.

This project was funded through a CIHR Transitions in Care – Best and Wise Practices research grant (2019-22). The goal of the study was to understand current experiences of healthcare transitions for individuals with variations in sex development / intersex traits. We hoped to speak with individuals, caregivers, and providers as part of the study and were focused on listening to experiences about healthcare transitions.

Healthcare transitions include leaving pediatric services, shifts from specialist care to primary care, specialist to specialist, and adult provider to another adult provider.

We completed a literature review of transition practices, an environmental scan of resources available across Canada, and we met with individuals with variation and their caregivers. A lack of attention to life-cycle transitions for individuals resulted in a lack of evidenced-based resources and guidelines.  Individuals missed opportunities to build relationships with healthcare partners and peers with intersex traits.  Health literacy was an important aspect of living well with sex variation. Personal agency was identified as necessary, here meant having confidence, ability, and capacity to act in their own best interests across their life-span. Well-being was important in day-to-day living and many question arose about how to ‘live their best life’. Paying attention to the needs for shared-decision making, ongoing education and access to evidence-informed resources, trauma-informed and person-centred approaches to care , and psychosocial support across the life-span were key findings. 

We are a small group of researchers who have come together as part of a research study exploring life-cycle healthcare among Canadians experiencing diverse (difference in) sex development (DSD), also known as intersex variations.

This project is funded through a CIHR Transitions in Care – Best and Wise Practices research grant. The goal of the study is to understand current experiences of healthcare transitions for individuals with variations in sex development (including care givers, friends or family) by talking with patients and healthcare providers (i.e. doctors, nurses, psychologists, social workers etc.). Healthcare transitions include leaving pediatric services, shifts from specialist care to primary care, specialist to specialist, and adult provider to another adult provider. A lack of attention to life-cycle transitions for individuals with DSD can contribute to frustration, misinformation, and poor health outcomes. By focusing on understanding experiences and current practice in this area we hope to better understand how to develop timely, effective, and evidence-informed transition healthcare for Canadians with variations in sex development, throughout their lives.

We will also be collecting information about these transitions from hospitals, primary healthcare teams or support groups to supplement what we learn from listening to individuals and providers. We will share what we find via our website, with those involved in the study, and through publications or stories in the media.