The Lurie Institute for Disability Policy

The Heller School for Social Policy and Management at Brandeis University

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Pregnancy Experiences of Women with IDD: Family Caregiver Perspectives (Eunice Kennedy Shriver National Institute for Child Health and Human Development) 

 The goal of this project is to determine the role of family caregivers in assisting women with intellectual and developmental disabilities (IDD) in accessing perinatal care and supports. Additionally, we aim to identify the unmet needs and barriers to health care and other supports related to pregnancy among women with IDD, as perceived by family caregivers.

The proposed research will expand an ongoing NIH-funded study: Improving Pregnancy Outcomes of Women with Intellectual and Developmental Disabilities (grant # R01HD02105, Parish and Mitra). The goal of the ongoing study is to systematically examine the healthcare experiences, outcomes, and costs for women with IDD during and after pregnancy as well as the development and dissemination of perinatal care recommendations for women with IDD. With guidance and support from Drs. Parish and Mitra (PIs on the funded R01 study), Ms. Robyn Powell, MA, JD is conducting an independent research project. Ms. Powell’s project aligns with specific aim 3 of the ongoing study, which is to identify unmet needs and barriers to perinatal care for women with IDD through (a) in-person interviews with pregnant women and new mothers with IDD, and (b) telephone interviews with the healthcare professionals who provide their health care. Ms. Powell’s study of family caregivers of women with IDD will be combined with findings from Aim 3 of the funded study, and will inform development of practice recommendations to improve the perinatal health of women with IDD and their infants.

Grant Number: #3R01HD082105-03S1

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