More than 1 million women of childbearing age in the U.S. report disabilities or needing assistance with activities of daily living, primarily because of chronic physical impairments that cause mobility difficulties. Anecdotal reports suggest that growing numbers of women with physical disabilities are choosing to become pregnant and bear children. Nonetheless, little information is available about the prevalence of women in the U.S. with physical disabilities who become pregnant and about their obstetrical experiences. The overall goal of this mixed-methods study is to provide systematic albeit exploratory evidence about pregnancy and childbearing experiences among U.S. women with chronic physical disabilities, with three specific aims: 1. To analyze four data sources, each of which contains information on different sets of women - the National Health Interview Survey (NHIS), the National Survey of Family Growth (NSFG), the National Spinal Cord Injury Database (NSCID), and the Sonya Slifka Longitudinal Multiple Sclerosis Study (Slifka) database - to explore pregnancy prevalence among women with chronic physical disabilities and to identify sociodemographic and physical functional characteristics associated with pregnancy;2. To review medical records at an academic medical center with a high risk obstetrical program to describe the prenatal course, labor and delivery, and birth outcome experiences of women with physical disabilities and women's sociodemographic and physical functional characteristics;and 3. To explore themes related to women's perceptions of how disability affected the pregnancy experience, including patient factors (e.g., perceptions and expectations about becoming pregnant, disability identity, the delivery experience), patients'perceptions of clinician factors (e.g., perceived attitudes of clinicians during pregnancy, labor and delivery, and immediate postpartum period), and environmental factors (e.g., patients'perceptions of accessibility of services during pregnancy and the puerperium). This project would represent an initial effort to quantify the prevalence of pregnancy among U.S. women with physical disabilities. The results would provide entirely new information concerning an understudied population, which has great personal importance for a historically disadvantaged group of women who have frequently experienced disparities in health care. Although exploratory, this study will lay an essential foundation for future research about pregnancy among women with physical disabilities. It will identify questions that need to be addressed and provide information about the utility of different data sources for exploring issues relating to pregnancy among women with physical disabilities. Our qualitative findings will offer additional insight into difficulties and barriers women with disabilities face during their obstetrical care, as well as potential suggestions for addressing these problems.

Public Health Relevance

More than 1 million women of childbearing age in the U.S. report physical disabilities, primarily from chronic mobility impairments. Anecdotal reports suggest that growing numbers of women with physical disabilities are choosing to become pregnant and bear children, but little is known about their prevalence or their pregnancy and childbearing experiences. In addition to providing insight into their experiences by interviewing women, this project would involve an initial effort to quantify the national prevalence of pregnancy among U.S. women with physical disabilities, producing entirely new information concerning an understudied group of women who have frequently experienced disparities in health care.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Exploratory/Developmental Grants (R21)
Project #
1R21HD068756-01A1
Application #
8238522
Study Section
Nursing and Related Clinical Sciences Study Section (NRCS)
Program Officer
Raju, Tonse N
Project Start
2012-01-15
Project End
2013-12-31
Budget Start
2012-01-15
Budget End
2012-12-31
Support Year
1
Fiscal Year
2012
Total Cost
$262,500
Indirect Cost
$112,500
Name
Massachusetts General Hospital
Department
Type
DUNS #
073130411
City
Boston
State
MA
Country
United States
Zip Code
02199
Iezzoni, Lisa I; Yu, Jun; Wint, Amy J et al. (2014) General health, health conditions, and current pregnancy among U.S. women with and without chronic physical disabilities. Disabil Health J 7:181-8
Iezzoni, Lisa I; Yu, Jun; Wint, Amy J et al. (2013) Prevalence of current pregnancy among US women with and without chronic physical disabilities. Med Care 51:555-62