DSD
Transitions

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. 

DSD Transitions

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.

Are you interested in supporting the development of effective, and evidence-informed healthcare support for Canadians with variations in sex development, at times referred to as intersex?

We are setting up a small advisory group in BC, led by individuals with a narrative of intersex / variations in sex development. This new and emerging group will use a ‘patient-oriented’ approach to determine and explore key issues in this area that are important to Canadians.

 

If you would like to learn more about how to get involved please contact caroline.sanders(at)unbc(dot)ca or transitionstudy(at)unbc(dot)ca.

Meet Our Team

Dr. Caroline Sanders

Dr. Caroline Sanders

Dr. Caroline Sanders is a nurse living and working in rural BC. She has worked as a nurse with children, families and young adults for almost 30 years.

She now spends her time teaching undergraduate and graduate nurses, research, and clinical practice. She loves the outdoors and the Canadian weather – even the snow.

Dr. Nicole Todd

Dr. Nicole Todd

Dr. Nicole Todd practices as an obstetrician gynecologist at BC Women’s Hospital, pediatric and adolescent gynecologist at BC Children’s Hospital, and a Clinical Assistant Professor at UBC. She participates in regular multi-disciplinary team meetings at BCCH for new diagnoses of diversity of sexual differentiation. She provides lifelong gynecological care for patients with DSD.

Dr. Nina Callens

Dr. Nina Callens

Dr. Nina Callens is a clinical psychologist and academic who is currently leading Belgian policy work examining intersex issues within government. She is an accomplished author with research interests focused on sexual/reproductive health and well-being.

Dr. Tiffany Jones

Dr. Tiffany Jones

Dr. Tiffany Jones is a sociologist who has authored papers and books in the area of intersex health, education and family dynamics. She has extensive experience working on policy development related to LGBTIQ+ issues for the UN and governments.

Leigh Crawford

Leigh Crawford

Leigh Crawford recently graduated from a Master’s of Public Policy where she completed her thesis on medical policy for Canadians with intersex variations. Leigh recently moved from Vancouver, BC to Ottawa, Ontario to work in environmental policy.

We would love to hear from you! 

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