1-Intersex adults living in Ontario or Quebec who have received care in the context of the Canadian healthcare system 2-Canadian healthcare practitioners who have provided care to intersex patients (G.P.s, genetic counsellors, OBGYNs, urologists, endocrinologists)
Introduction: The belief that all human beings develop into only one of two neatly defined sexes — male and female — is deeply inaccurate. As much as 2% of the population falls under the category of intersex, with chromosomes, gonads, hormones, or genitalia that exist along a spectrum of sex differences. Intersex individuals face egregious human rights violations, discrimination, and stigmatization worldwide. Historically, these issues have been exacerbated by healthcare practitioners (HCPs) via unnecessary surgical interventions, the withholding of accurate health information, and an overemphasis of incidental health risks. Attitudes have recently begun to shift. In June 2017, three former US Surgeon Generals released a policy brief recognizing the psychosocial harms of stigmatization of intersex individuals, and the lack of evidence that surgeries diminish these harms. In October 2017, the Parliamentary Assembly of the Council of Europe called for a ban on medically unnecessary “sex-normalizing” surgeries on intersex infants. At the same time, advances in genetic testing are increasing the frequency with which we can detect intersex conditions. Despite a pressing need, qualitative research from which to base public policies for ending these harms remains underdeveloped, and no Canadian-specific guidance exists.
Challenges and issues to be addressed: Health communication (HC), the study and practice of communicating health information, is extremely fraught between health care providers (HCPs) and members of sexual and gender minority communities. For intersex individuals, distrust of the medical system due to poor treatment is exacerbated by poor HC, generating reluctance to seek medical care even for issues unrelated to the initial trauma, and greatly impacting quality of life. Research into the ethical and legal challenges of engaging in positive HC with this population, however, is sparse, and is often aimed at bioethicists, rather than at HCPs. Moreover, existing normative documents are not well-grounded in the legal or ethical obligations of HCPs toward their intersex patients.
Approach: The proposed project will engage two communities of stakeholders: intersex individuals and HCPs. The core objectives of the project are to generate much-needed qualitative evidence on the experiences of intersex individuals in the healthcare system, and to use this evidence to develop improved standards of care. Using a constructivist grounded theory approach within a care ethics framework, we will undertake two research tracks: 1) a comparative review of the laws and policies affecting intersex individuals in the healthcare context; and 2) a series of semi-structured interviews with intersex adults and with the HCPs implicated in their care. From these, we will develop: 1) a guidance document on effective HC with intersex patients in the Canadian context; 2) an issues paper highlighting the challenges of conducting person-centered research with vulnerable populations; and 3) clear and concise information sheets in both French and English for intersex individuals navigating the Canadian healthcare system.
Advancement of Knowledge: “Nothing about us without us”, the premise that affected individuals should be included in all levels of services, treatments, and research, has been embraced by the intersex community, and the Canadian Tri-Council research bodies have similarly set goals to improve person-centered research and care. However, the qualitative data necessary to achieve these goals has not yet been the subject of extensive research. As such, our methodologies and outcomes will privilege the concerns and lived experiences of intersex individuals, and fill an important evidentiary gap.
Recruitment posters are available for different participant groups.
How will this research help LGBT people and communities?
We are engaging with a community that has experienced egregious harms and human rights violations. Conversations on LGBTQIS2 rights have evolved rapidly in recent years, but the continuing pathologization of intersex conditions stemming from the medical community has meant that intersex individuals have not benefited from this shift as deeply as others in this cohort, and have not only experienced discrimination within the medical system, but more broadly in society at large. This project looks toward a future improvement in the quality of life for intersex individuals not only stemming from enhanced policy, but also through enriching and deepening the public discourse on human sexual variation. Intersex advocacy groups have called for destigmatization of intersex variations and improved communication from healthcare professionals. They have also asked for translation of research into concrete practical tools that improve HCP practice. This project was developed by an interdisciplinary team including input from the intersex community. It aims to improve healthcare experiences for intersex people in Canada. Guided by the concerns of people from the intersex community, we will produce two practical tools that will directly benefit intersex people navigating healthcare settings: o A guidance document for Canadian healthcare provider’s on best practices for communication and working relationships with their intersex patients o Clear and concise information sheets for people born with intersex variations on navigating the Canadian healthcare system
Intersex adults participating in interviews about their experiences communicating with Canadian healthcare providers will be given a $35 honorarium.
What mitigation measures are in place to reduce potential distress caused to participants as a result of being part of the research study?
The interviewer is trained in culturally sensitive and trauma informed interview skills, is familiar with intersex patient advocacy, and has a background in counselling psychology. Intersex interviewees will receive a resource list of free or sliding scale therapy services, free active listening services, and peer support and advocacy groups. The interview questions were developed through a feminism and care ethics framework and designed to be sensitive, strength-based, and position the participants as the experts of their own lives. Consent will be ongoing and interviewees can decline to answer any question and end the interview at any time.
When do you anticipate that this study's findings will be available?
Name: Katie Saulnier