The Lurie Institute for Disability Policy

The Heller School for Social Policy and Management at Brandeis University

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The goal of this project is to determine the role of family caregivers in assisting women with intellectual and developmental disabilities (IDD) access perinatal care and supports; and 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.

Grant Number: #3R01HD082105-03S1

The proposed research will expand an ongoing NIH-funded study: Improving Pregnancy Outcomes of Women with Intellectual and Developmental Disabilities (IDD; grant # R01HD02105, Parish and Mitra, multiple-principal investigators). The goal of the ongoing study is to systematically examine the health care 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. Powell will conduct 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 health care 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. Ms. Powell, with guidance from Drs. Parish and Mitra, proposes to extend the research that will be conducted to achieve this aim.

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