Lifespan healthcare transitions among individuals with intersex traits in Canada: a mixed-methods and qualitative study

OBJECTIVES: To: (1) complete an integrative literature review of transition studies that focus on individuals with intersex traits; (2) conduct an environmental scan of the current resources (practice guidelines, policies and procedures) used by healthcare providers working with Canadians with intersex traits; (3) investigate the experiences of Canadians with intersex traits in their healthcare transitions across the lifespan and (4) assess the understanding of healthcare providers about these transitions. DESIGN: A qualitative prospective community participation study was conducted. It used mixed methods including an environmental scan and semistructured engagement sessions. SETTING: The environmental scan examined resources available throughout Canada. The engagement sessions took place in British Columbia and Ontario, Canada. PARTICIPANTS: Sixteen participants were recruited. These included 13 individuals with intersex traits (a heterogeneous group of congenital conditions affecting the development of sex characteristics) and three caregivers. METHODS: Mixed methods included an integrated literature review, environmental scan and qualitative approaches developed in collaboration with community partners. RESULTS: The literature review identified gaps in transition care for individuals with intersex traits. The environmental scan uncovered no specific resources used by healthcare providers working with patients with intersex traits, though several general guidelines were used. Engaging providers in the study was problematic. Thematic analysis generated three main themes that emerged from the engagement sessions: (1) transition is a lifespan activity; (2) building personal agency is valuable and (3) well-being promotion is an application of health literacy. CONCLUSIONS: Transition resources for individuals living in Canada with intersex are scarce. Transitions happen across the lifespan with ownership of thought and actions seen as acts of personal agency. Health literacy skills and knowledge change with increased age, yet the primary source of knowledge often remained important in the individual’s autobiographical self.