Pregnancy Outcomes and Experiences among Deaf and Hard of Hearing Women

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Women who are deaf and hard of hearing (DHH) experience significant barriers to appropriate reproductive health care services and health information. Specifically, the lack of effective communication, such as sign language interpreters, hinders access to reproductive health care services and information for DHH women. While women who are DHH are equally likely to be pregnant as women with other disabilities and women without disabilities, there is almost no information and research about their pregnancy experiences, maternal and birth outcomes, and associated healthcare costs. Preliminary findings from the investigator team demonstrate that DHH women are at substantial risk for adverse pregnancy outcomes. Efforts to improve their pregnancy care and experiences while reducing costs require a definitive assessment of these women's pregnancy risks and outcomes. The overarching goal of this study is to use a mixed- methods approach to understand pregnancy experiences, maternal and birth outcomes, related health care costs, and unmet perinatal health care needs of DHH women and their infants. The specific aims of this study are: 1) Compare pregnancy and childbirth complications, outcomes, and inpatient costs among DHH and non- DHH women using nationally-representative 2008-13 Healthcare Cost and Utilization Project Nationwide Inpatient Sample data; 2) 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 other women using linked data from the Massachusetts Pregnancy to Early Life Longitudinal – All Payer Claims Database; and 3) Identify unmet needs and barriers to pregnancy and perinatal care for DHH women through (a) interviews with DHH mothers, (b) a national survey of the unmet needs and barriers to pregnancy and perinatal care of DHH mothers who have given birth in the last 5 years, and (c) interviews with clinicians who provide their health care. This information will be used to generate practice recommendations to improve the perinatal health of DHH women and their infants. Our study will lead to a first-ever systematic understanding of pregnancy and infant health outcomes and pregnancy care costs for DHH women, thus establishing a foundation for development and testing of future interventions to improve outcomes. This study will fill a critical knowledge gap in the understanding of the pregnancy-related experiences among DHH women before, during and after pregnancy.