The Disability and Pregnancy Study
Overview: This study aims to provide an understanding of the perinatal health and health care experiences of women with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada. Using health administrative data (from ICES), we aimed to describe the pregnancy rates, preconception health characteristics, and maternal and infant health outcomes of women with disabilities compared to those without disabilities in Ontario. To understand perinatal health care experiences, we interviewed 31 people* with disabilities who had recently experienced pregnancy and birth, as well as 31 health and social service providers and decision-makers across Ontario.
Status: Data analysis is underway; see Publications for findings published to-date.
Funding: National Institutes of Health (Research Project R01)
The Disability and Reproductive Health Study
Overview: Despite the growing number of women with disabilities becoming pregnant, there is scant research on women with disabilities’ attitudes, desires, and intentions regarding motherhood or their reproductive life plans. This study aims to provide a greater understanding of the reproductive life plans of people* with physical disabilities and/or intellectual/developmental disabilities in Ontario, Canada. Using qualitative methods, this study explores:
- Experiences of reproductive life planning, including pregnancy desires, prevention (contraception use), and termination experiences;
- Where or from whom people with disabilities access information about reproductive life planning (and the helpfulness of these sources and resources); and,
- The psychosocial health of people with disabilities in relation to reproductive life planning, with a focus on their interpersonal relationships (e.g., social support, relationships with partners).
Status: Data collection completed, as of February 23, 2021 (30 participants).
Role: Principal Investigator, Postdoctoral Research Fellow
Funding: Canadian Institutes of Health Research (Postdoctoral Fellowship)
The RESPCCT Study
Overview: Very little is known about how people experience care during pregnancy and childbirth across Canada, especially among people with various identities, circumstances, and backgrounds. Differences in experiences and outcomes across communities may be linked to access to care, their individual health status, and/or how they are treated. We do not know for sure, and there is very little research that has asked people who have experienced pregnancy and/or birth to decide on what is most important to study and understand. For the RESPCCT study, a diverse group of people who had recent pregnancy experiences created or chose the questions to ask. They worked with researchers and community-based organizations to develop this survey, and to reach people across Canada who want to tell their stories of pregnancy and childbearing.
The RESPCCT study is an online survey for anyone in Canada who has experienced pregnancy and/or birth in the last 10 years. The survey captures information about respect, exceptional care, and kindness as well as stories of disrespect, discrimination, and/or mistreatment during care. In some ways, the RESPCCT Study serves as a comprehensive follow-up to the 2006 Public Health Agency of Canada/Statistics Canada Canadian Maternity Experiences Survey (MES), aiming to capture the experiences of diverse populations, including those who report experiencing barriers to equitable perinatal care (not included in the MES, e.g., trans people, people with disabilities, etc.). Information gathered from the survey will be used to improve childbearing care for all types of communities.
Status: Data collection is underway. As of April 28, 2021, over 600 participants have completed the survey. Please visit respcct.ca to complete the survey. The survey is available in 8 languages and can be completed in more than one sitting/session (on the same device).
Role: Co-Investigator (Principal Investigator: Saraswathi Vedam)
Funding: Canadian Institutes of Health Research (Project Grant)
Birth Includes Us: Understanding Queer and Trans Families Experiences of Pregnancy Care
Overview: The Birth Includes Us study is an extension of the RESPCCT study focused on the pregnancy care experiences of LGBTQ2S+ people in Canada and the United States.
Status: In development.
Role: Collaborator (Principal Investigator: Molly Altman)
Funding: UBC-UW Collaborative Research Mobility Award, Royalty Research Fund
Young Sexual Minority Women’s Experiences of Sexual Violence
Overview: Young sexual minority people report elevated rates of sexual violence in comparison to their heterosexual peers. This disparity is largest among lesbian and bisexual people, and in particular bisexual women. Little is known about what drives this health disparity, which is critically necessary information for developing effective sexual violence interventions. This mixed-methods study aims to understand young sexual minority women’s experiences of sexual and mental health, including experiences of sexual violence.
Status: A total of 328 young sexual minority people* (including 141 who identified as bisexual) in Canada and the United States completed the online survey. Interviews were then conducted with 25 of the survey participants (all of whom had reported at least one instance of sexual violence). Data analysis is underway.
Role: Co-Principal Investigator (Nominated Principal Investigator: Corey Flanders)
Funding: American Psychological Foundation (Wayne F. Placek Grant)
Canadian Perinatal Mental Health Collaborative – Assessing Gaps in Canadian Perinatal Mental Health Services
Overview: The Canadian Perinatal Mental Health Collaborative (CPMHC) is Canada’s first and only perinatal mental health advocacy organization calling on the federal government to enact a national perinatal mental health strategy. In collaboration with prominent Canadian researchers in the field of perinatal mental health that form the CPMHC’s National Committee, the CPMHC created a survey for health care providers across Canada to assess whether screening for perinatal mood and anxiety disorders (which can include preconception, prenatal and postpartum depression, anxiety, obsessive-compulsive disorder, bipolar disorder, and psychosis) is taking place, what methods are being employed in different jurisdictions, and whether persons are receiving access to timely and appropriate treatment. The CPMHC hopes the results of the survey will shed light on the state of perinatal mental health care in Canada and help guide the Government of Canada in creating a national perinatal mental health strategy.
Status: Over 400 health care providers across Canada completed the survey. Data analysis is underway. National Report complete (May 2021).
Role: National Committee Member (Principal Investigator: Lianne Tomfohr-Madsen; CPMHC Co-Founders: Jaime Charlebois and Patricia Tomasi)
For my PhD, I conducted a qualitative study on the perinatal and early motherhood experiences of women with physical disabilities in Ontario, with an emphasis on care experiences and embodiment. See Publications for a copy of my dissertation and associated publications.
As a member of the Re:searching for LGBTQ2S+ Health team and other research teams/labs based in Toronto, I have contributed to several studies in the areas of perinatal health, mental health, and LGBTQ health (and the intersection of these), including:
- Creating Our Families: A pilot study of the experiences of lesbian, gay, bisexual and trans people accessing assisted human reproduction services in Ontario (PIs: Lori Ross and Leah Steele)
- The Postpartum Well-Being Study (PIs: Lori Ross and Abbie Goldberg)
- Healthy mothers, healthy families: Evaluating integrated treatment for pregnant and parenting women with addictions (PIs: Karen Milligan and Karen Urbanoski)
- ‘Community’ Reconsidered (PI: Sean Kidd)
See Publications for publications associated with the above studies.