The Lurie Institute for Disability Policy

The Heller School for Social Policy and Management at Brandeis University

skip to content

Pregnancy Outcomes and Experiences among Deaf and Hard of Hearing Women

By identifying unmet pregnancy and perinatal care needs, this study will define shortcomings in healthcare and other support systems for pregnant DHH women. These findings will inform the development of evidence-based policies and practices to improve perinatal care for DHH women and ultimately improve their and their infants’ outcomes. Finally this study will develop perinatal care recommendations, providing clinicians with practical tools to address the unique needs of this vulnerable population of DHH women.

This study addresses the pregnancy, perinatal experiences, and health of deaf and hard of hearing (DHH) women. Hearing loss is a marginalizing and disabling condition, resulting in a variety of adverse social and health outcomes. Hearing loss affects up to 5% of US women of reproductive age, yet there are no known population-based studies examining their perinatal health, pregnancy complications, and maternal outcomes. Unfortunately, DHH individuals, including those with congenital hearing loss or Deaf American Sign Language users, are at extremely high risk for significant health disparities and social marginalization due to barriers in language, communication, and culture, along with a general mistrust of the medical community. There is currently no information or research about their pregnancy experiences, factors contributing to maternal and birth outcomes disparities, along with associated healthcare costs, or their infants’ health outcomes. To the best of our knowledge, there is no US population-based research on pregnancy of DHH women or their access to perinatal care. Given these findings, there is a critical need for a systematic examination of the pregnancy experiences, complications, costs, quality of care, and outcomes of US women who are DHH. The overall goal of this research proposal is to systematically examine and understand the healthcare experiences, outcomes, and costs incurred by DHH women during and after pregnancy. We hypothesize DHH women and their infants will have worse prenatal and postpartum health than other women and children. We also hypothesize that DHH women experience substantial unmet needs and barriers to receiving appropriate perinatal care. We are analyzing hospital discharge data from the Nationwide Inpatient Sample (NIS) of the Healthcare Cost and Utilization Project (HCUP), sponsored by the Agency for Healthcare Research Quality to provide nationwide estimates of inpatient care. This dataset is the largest all-payer, publicly-available US inpatient healthcare database. We are also analyzing data from the Massachusetts Pregnancy to Early Life Longitudinal (PELL) data system with the All Payer Claims Database (APCD) to examine longitudinal health outcomes and healthcare utilization and costs of DHH women around the time of their pregnancy and for their infants (up to 1 year of age) compared to non-DHH women.

Grant #: R01HD090103 

Knowledge Advancing Social Justice

Copyright 2019 • Brandeis University • All rights are reserved