• Improving Healthcare for Intersex Canadians through Effective Health Communication

    Research Summary 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

    Recruitment posters are available for different participant groups.  
  • The Disability and Pregnancy Study

    About 1 in 10 women of reproductive age (15-44 years) has a disability and women with disabilities are becoming pregnant at increasing rates. Research has found that women with disabilities are at greater risk of experiencing pregnancy, delivery, and postpartum complications, and that they encounter barriers to pregnancy-related care, such as negative attitudes and inaccessible care settings. However, particularly in Canada, we know little about how women with disabilities experience pregnancy and what their pregnancy-related care experiences are like. Our specific aims are to: (1) Explore the pregnancy experiences of people* with physical, sensory, and intellectual and developmental disabilities, as well as experiences of health and social service providers (e.g., physicians, nurses, social workers) and policy-makers in providing pregnancy-related care in Ontario; and (2) Identify how this knowledge can be used to improve the health and health care experiences of people with disabilities during pregnancy, delivery, and the postpartum period. *This study is trans-inclusive; anyone who has experienced pregnancy and birth can participate.

  • Where I can be myself? Trajectories of equity and inclusion for transgender and non-binary older adults within community-based social support programming

    For older adults (e.g., individuals aged 65 and over) within Canada, the desire to remain independent and feel supported throughout later life is a nearly universal sentiment (Public Health Agency of Canada [PHAC], 2006; Sandberg, 2008; Witten, 2003). Community support may be especially important in fostering positive experiences and perceptions of aging and later life (Chang, Wray, & Lin, 2014; Chappell & Funk, 2011; Witten, 2009). Within the proposed inquiry, community support is understood as a holistic network of social support that older adults can depend on no matter the circumstances or situation (Chappell & Funk, 2011; Witten, 2009). This may include (but is not limited to) the individual; connections with family, friends, and/or significant others; leisure opportunities; access to and involvement in community organizations, programs, and/or services; (in)formal care partnerships; and government assistance programs (Chappell & Funk, 2011; Witten, 2009). However, the common misconception that older adults are a homogenous group whose experiences are identical has led to overgeneralizations which omit the influence of social factors (i.e., age, race, gender, sexuality, socioeconomic status, family structure, friendships, and access to high-quality care) on an individual’s capacity to be supported and age well (Grant & NGLTFI, 2009; Rowe & Kahn, 2015). As these various aspects of an individual’s identity come together to influence aging and later life within Canada, there are many factors that may make aging well precarious. One of the most concerning factors—outside of class and race—in today’s society is gender identity. Therefore, this study—informed by queer and gerontological theories—will use Thomas' (2011) case study methodology to explore how the interconnections of aging and gender identity influence—and are influenced by— transgender and non-binary older adults’ experiences, perceptions, and desires of community support within the Greater Toronto Area (GTA). By sharing transgender older adults’ stories of aging, gender identity, and community support, possibilities open up to provide a more complex understanding of interconnections of aging, gender identity, and community; while simultaneously producing research that is mindful of historical and cultural discourses. The more clearly we begin to understand the ways that community support influences the aging experiences of transgender and non-binary adults, the easier it will become to enhance opportunities for community support that promote the wellbeing of trans and non-binary older adults across Canada.

  • Supporting Trans and Gender Diverse Youth: Policy and Practice

    Transphobia, and addressing gender justice in the school system have been identified as significant human rights issues. The primary objective of this proposed research is to investigate trans specific education policy contexts and practices with the view to generating knowledge about how the experiences of transgender youth, gender non-conformity and gender creative expression are being addressed in the school system and pedagogically in classrooms (Ehrensaft, 2014;Meyer & Pullen-Sansfacon, 2014; Martino & Cumming-Potvin, 2016; 2018; Ryan et al., 2013; DePalma, 2013). How can the accounts of trans, non-binary and gender diverse youth be employed to better inform current practice in schools with respect to supporting gender expansive education? While there is evidence of trans specific school board policies in jurisdictions such as Ontario and California where we are conducting research, there is no detailed analysis of such polices, no school-based research that has investigated the effects of these policies, and scant research that has been generated about trans-affirmative pedagogical practices in the classroom and which centre the accounts of trans and gender diverse youth as a vital and necessary source of knowledge. The aim of this research, therefore, is to generate knowledge about trans-affirmative policies and practices in school boards/districts and to centre the accounts of trans and non-binary youth both inside and outside of school. Research is needed that seeks to include the interpretive insights of transgender, gender diverse and non-binary students and educators, as well as those from the broader trans community, with the expressed purpose of learning about policy and pedagogical effects of trans-affirmative interventions in schools from their standpoints. Central to this study, therefore, is a commitment to interpretive collaborative research that is grounded in a recognition of the need to learn from transgender, non-binary and gender diverse youth, trans educators, community members and to involve them in an examination of current trans policies and resources that are being employed in schools (Dodson et al., 2007). Moreover, in order to ensure “the spectrum of identities found within the community” (Green, 2010, p. 3), a diverse representation of subgroups from within the trans community will be included in the sample (Namaste, 2000). Interpretive input from and collaboration with trans, non-binary and gender diverse students, educators and community members will lead to building more informed and grounded knowledge and understanding of current policies and pedagogical practices in the education system that are committed to ensuring transformative gender justice (Travers, 2014; Stryker, 2006; Noble, 2004).

  • Toward a Practice Framework for Sexual and Gender Minority Forced Migrants Acculturating into Canadian Society

    Through individual interviews, this study aims to achieve two objectives. The first objective of this study is to illuminate how LGBTQ-affirmative mental health care providers and refugee mental health providers describe their readiness to support LGBTQ forced migrants in Canada. The second objective is to learn what therapeutic approaches best support LGBTQ forced migrants’ mental health and wellbeing. The specific aims of the study are to a) identify gaps in knowledge, attitudes, and skills in serving LGBTQ refugees/forced migrants; b) uncover emerging best practices for serving LGBTQ refugees/forced migrants that can be shared with a diverse array of mental health practitioners; and c) understand from LGBTQ refugees/forced migrants who have received treatment from mental health providers what factors facilitated and/or hindered their mental health and wellbeing. These objectives and aims will be achieved through triangulating the insights, expertise, and experiences with four subsample groups: 1) LGBTQ-affirmative mental health providers with no experience serving refugees; 2) refugee mental health providers with no experience serving LGBTQ individuals; 3) mental health providers who have experience serving LGBTQ refugees/forced migrants; and 4) LGBTQ forced migrants themselves who have received treatment from mental health providers. Samples will be recruited across Canada.

  • Experience and unmet needs of transgender middle-aged and older adults in oncology care: A qualitative study

    Transgender older adults are at higher risk of poor health outcomes when compared to other non-transgender sexual minority older adults. One-third (33%) of transgender persons reporting at least one negative healthcare experience by healthcare providers due to being transgender (e.g. verbal harassment, refusal of treatment due to their gender identity. Additionally, nearly one-quarter (23%) of transgender persons avoid seeking health care due to fear of discrimination and mistreatment. Cancer is a disease of aging, with individuals >65 years accounting for 60% of all newly diagnosed cancer and 70% of all cancer deaths. Therefore, it stands to reason that a significant but underrepresented number of middle-aged and older transgender people may already have cancer, or are at increased risk of developing it. We can anticipate a continued increase of older cancer patients who are transgender and who will require quality health care and services in the foreseeable future. This is particularly important as cancer is a strong driver for functional decline and a heightened risk of depression in older adults. For persons who are lesbian, gay, bisexual, or transgender (LGBT), a cancer diagnosis may confer higher risk of adverse physical and psychological outcomes compared to those who are heterosexual and/or cisgender. Understanding the cancer care experiences and unmet needs of this marginalized, vulnerable population is a vital first step in the effort to improve care, promote positive care experiences, and decrease the risk of psychosocial distress related to cancer and cancer care. The purpose of this study is to explore the cancer care experiences and potential unmet needs of transgender middle-aged and older adults with cancer.

  • The Ontario PrEP Cohort Study

    PrEP use is becoming more common, but there are still questions about how PrEP will be used by communities most impacted by the HIV epidemic and what potential benefits and challenges will arise as PrEP use grows. The Ontario PrEP Cohort study seeks to answer these questions by enrolling 1250 participants who are using PrEP across the province and collecting data on their health and behaviour while using PrEP, how they think and feel about using PrEP, and their experiences accessing healthcare. We to use this data to inform policies and decision – making regarding PrEP access across Ontario.

  • An Examination of Resilience Against HIV/AIDS Among Middle-aged and Older Men Who Have Sex With Men: Resources, Strengths, and Protective Factors

    Background and Rationale: There is considerable resilience among middle-aged and older, cis and trans, gay, bisexual, and other men who have sex with men (MSM) against HIV/AIDS. Despite being part of a population at increased risk for acquiring HIV, many MSM aged 40 years and older (40+) have remained HIV-negative (HIV-) since the start of the epidemic. Among HIV-positive (HIV+) MSM aged 40 years and older, many have exhibited resilience against HIV/AIDS not only by surviving its adverse impacts, but also by living active and full lives; fiercely advocating for their rights, and health care and service needs; and staunchly supporting and promoting prevention and intervention programs dedicated to ending HIV/AIDS. Since the beginning of the HIV/AIDS epidemic in the early 1980s, MSM have remained the population most affected by HIV/AIDS in Canada. Although the proportion of HIV cases among MSM 30 to 39 years old has been decreasing since 1994, the proportion of new HIV infections among 40+ MSM has been increasing since the beginning of the epidemic. The Public Health Agency of Canada reports that most research available on HIV/AIDS among MSM focuses on their vulnerability and that research on resilience of MSM against HIV/AIDS is wanting. It also reports that although there are studies on young MSM and resilience, there is a lack of research undertaken with older MSM. This suggests that resilience of older MSM against HIV/AIDS represents a serious research gap. Scientific literature and historical accounts provide evidence of resilience among MSM, and some research shows the challenges and coping strategies of HIV+ older MSM. However, to date, there has been no research conducted to examine the resilience of both HIV+ and HIV- 40+ cis and trans MSM against HIV/AIDS. Aim: The aim of our project is to examine the resources, strengths, and protective factors HIV+/- 40+ MSM possess that prevent HIV acquisition and transmission in the community and allow them to thrive in a society that may not be ready to meet the growing needs of a burgeoning number of older MSM and HIV long-term survivors in the decades to come. Project Design: Staying true to the tenets of Community-Based Research (CBR), we plan to recruit and include in our project several HIV+ and HIV- 40+ MSM as members of our Community Advisory Board and as peer researchers (PRs) so that they can provide input and feedback on all aspects and during all stages of the research process as full partners. We will provide training for our PRs so that they can interview thirty HIV+ and thirty HIV- 40+ cis/trans MSM from across Ontario to explore their resilience against HIV/AIDS. Our PRs will use an interview guide – informed, developed, and created with the input of our relevant stakeholders – to conduct confidential, semi-structured, digitally audio-recorded interviews with study participants. We will be employing a constructivist grounded theory approach to our research project, including multiple perspectives and interpretations into the iterative process of generating information and theory from the critical thematic analysis of interview data at different phases of the project.