The Disability and Pregnancy Study
Co-Principal Investigators: Hilary Brown (Interdisciplinary Centre for Health & Society, University of Toronto Scarborough) and Yona Lunsky (Azrieli Adult Neurodevelopmental Centre, Centre for Addiction & Mental Health)
Funding: National Institutes of Health (US)
Project Summary (June 2018)
Our goal is to generate knowledge that will improve the perinatal health and health care experiences of women* with physical, sensory, and intellectual and/or developmental disabilities in Ontario.
In the first phase, we are conducting a province-wide study using health and social services administrative data. Our specific aims are to:
- Describe the preconception health characteristics and fertility/pregnancy rates of women with and without disabilities;
- Compare maternal and infant outcomes or complications (e.g., gestational diabetes, cesarean delivery, preterm birth) of women with versus without disabilities; and,
- Evaluate factors that exacerbate or explain risks for complications.
In the second phase, we will be interviewing women with disabilities, health and social service providers, and decision-makers in Ontario. Our specific aims are to:
- Explore social, health, and health care factors that could impact the pregnancy and birth experiences of women with disabilities; and
- Identify how this knowledge can be used to improve the health and health care experiences of women with disabilities during pregnancy and birth.
As a Postdoctoral Research Fellow, I am leading the second (qualitative) phase of this study and coordinating the study’s advisory committee. Advisory committee members include women and mothers with disabilities, staff from organizations that work with people with disabilities, health and social service providers, and representatives from the Ontario Ministry of Health and Long-Term Care.
*The qualitative phase of the study is inclusive of trans and non-binary people – anyone who has experienced pregnancy and birth.
June 2019: We are now seeking participants for the qualitative phase of the study!
Recruitment text and flyers below:
What is this study about?
Researchers at the University of Toronto are doing a study to learn about the experiences and needs of women, trans, and non-binary with disabilities when they are pregnant and having a baby.
Am I eligible?
You may be able to be part of this study if:
- You live in Ontario
- You are 18 years old or older
- You had a baby in the last 5 years
- You have a physical, sensory, intellectual, and/or developmental disability*
What do I have to do?
You will be asked to take part in an interview about what services you used around the time you were pregnant and if those services were helpful. The interview will take about 1 hour and can be done at a time and place that is good for you. You can do the study, or not do the study. No one will be told about what you choose. The choice you make will not impact any of the services you use now or later.
What are the benefits of participating?
You can help us learn how to improve supports for people with disabilities during pregnancy and birth. You will get a $50 gift card to thank you for your time. If you need any supports to participate, like ASL interpretation, these can be arranged.
I am interested! Who do I contact?
Please contact the Study Coordinator, Lesley, by telephone 647-601-4519 or email email@example.com
This study has been approved by the Health Sciences Research Ethics Board at the University of Toronto. This research is funded by the National Institutes of Health, and is led by researchers at the University of Toronto, in collaboration with the Centre for Addiction & Mental Health, Women’s College Hospital, Ohio State University, St. Michael’s Hospital, Northeastern University, ICES, and an advisory committee that includes women with disabilities and organizations that serve people with disabilities.
*We recognize that not everyone identifies as having a disability or feels that the label of disability applies to them (e.g., people who are Deaf). This study is inclusive of anyone who has lived experience of a condition that impacts mobility, flexibility, dexterity, sight, hearing, and/or cognitive ability. These can be visible or invisible, congenital or acquired, episodic or chronic, progressive or stable. You do not need to have an official diagnosis to participate.
Related to the Disability and Pregnancy Study, we recently published a systematic review and meta-analysis in the American Journal of Obstetrics & Gynecology exploring the association between maternal disabilities and risk for pregnancy, delivery, and postpartum complications.
In addition to the Disability and Pregnancy Study, I am in the process of developing a study focused on the preconception health of women with disabilities, thanks to funding from the Canadian Institutes of Health Research (Postdoctoral Fellowship). Stay tuned…