The Lurie Institute for Disability Policy

The Heller School for Social Policy and Management at Brandeis University

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Improving Pregnancy Outcomes among Women with Intellectual and Developmental Disabilities  (National Institutes of Health  NIH)

Our aim is to identify unmet needs and barriers to perinatal care for women with intellectual and developmental disabilities through in-person interviews with pregnant women and new mothers with intellectual and developmental disabilities. This information will be used to generate practice recommendations to improve the perinatal health of women with intellectual and developmental disabilities and their infants.


Grant Number: #1R01HD082105-01


Our pilot studies suggest US women with intellectual and developmental disabilities and their infants are at an elevated risk for adverse pregnancy and childbirth outcomes. Although their numbers may be proportionally small  fewer than 1  of US pregnancies in our pilot sample), associated health care costs among these women may be exceptionally high. Efforts to improve the care they receive during pregnancy and reduce costs would benefit substantially from a more definitive assessment of the potential pregnancy risks and outcomes. However, the methodological difficulties of including women with intellectual and developmental disabilities in population-based surveys make this challenging. To date, there is no research on pregnancy or infant health outcomes with a population-based sample of US women with intellectual and developmental disabilities except for our two pilot studies, which are presently under review  Mitra et al, 2014; Parish et al, 2014).


We are examining three fundamental questions about the health of women with intellectual and developmental disabilities during their pregnancy and their infants: 1) Are there differences in pregnancy complications, outcomes, health service utilization and costs among women with and without intellectual and developmental disabilities?; 2) What needs of pregnant women with intellectual and developmental disabilities currently go unmet?; and 3) Can we make specific recommendations to assist providers in providing and improving perinatal care for pregnant women with intellectual and developmental disabilities? Our study will lead to a systematic understanding of pregnancy and infant health outcomes and pregnancy care costs for US women with intellectual and developmental disabilities, thus establishing a foundation for development and testing of future interventions to improve outcomes. Our aim is to identify unmet needs and barriers to perinatal care for women with intellectual and developmental disabilities through in-person interviews with pregnant women and new mothers with intellectual and developmental disabilities. This information will be used to generate practice recommendations to improve the perinatal health of women with intellectual and developmental disabilities and their infants.

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