Pregnancy in Women with Disabilities: Using Novel Methods to Characterize Risk
Co-Principal Investigators: Hilary Brown and Yona Lunsky
Funding: National Institutes of Health (US)
Our goal is to generate knowledge that will inform programs to improve pregnancy outcomes among women with physical, sensory, and intellectual and developmental disabilities. In the first phase, we will conduct a province-wide study using Ontario (Canada) health care and social services data. Our specific aims are to: (1) Describe the fertility rates and pre-pregnancy characteristics of women with and without disabilities; (2) Compare maternal and infant outcomes of women with vs. without disabilities; and (3) Evaluate factors that exacerbate or explain risks for poor outcomes. In the second phase, we will interview women with disabilities, service-providers, and decision-makers in Ontario. Our specific aims are to: (1) Further explore factors that could exacerbate or explain risks; and (2) Identify how knowledge of risks can be used to improve pregnancy-related care for women with disabilities. In the first phase, we will obtain data from the Institute for Clinical Evaluative Sciences, an independent, non-profit organization that houses databases containing health data gathered from the health care encounters of all Ontario residents. This information can be linked with disability income support documentation from the Ontario Ministry of Community and Social Services. Women will be classified as having physical, sensory, intellectual and developmental, or multiple disabilities if they have relevant diagnoses recorded in health care data or in documentation for disability income support receipt. We will identify all obstetrical deliveries to 18- to 49-year-old women with and without disabilities between 2009 and 2014. Study outcomes will be indicators of maternal and infant health monitored by the Canadian Perinatal Surveillance System. In the second phase, we will interview women with disabilities, service-providers, and decision-makers who will be recruited from our existing partnerships with self-advocacy, clinical, and government organizations. We will analyze interview transcripts to identify themes that describe clinical applications to improve pregnancy outcomes of women with disabilities. Detailed estimates of pregnancy risks, grounded in the experiences of women with disabilities, service-providers, and decision-makers, will create information needed to improve screening, follow-up, and support for pregnant women with disabilities.
I am leading the second (qualitative) phase of this study as a Postdoctoral Research Fellow.