Pregnancy Experience of Women with Physical Disabilities

描述（由申请人提供）：在美国，超过100万育龄妇女报告残疾或需要日常生活活动的帮助，主要是因为导致行动困难的慢性身体损伤。有传闻称，越来越多的身体残疾妇女选择怀孕生子。尽管如此，很少有关于美国身体残疾妇女怀孕和分娩经历的信息。这项混合方法研究的总体目标是提供有关美国慢性身体残疾妇女怀孕和生育经验的系统性探索性证据，具体目标有三个：1.分析四个数据源，每个数据源包含不同妇女的信息-国家健康访谈调查（NHIS），国家家庭成长调查（NSFG），国家脊髓损伤数据库（NSCID），Sonya Slifka纵向多发性硬化症研究（Slifka）数据库-探讨慢性肢体残疾妇女的怀孕率，并确定与怀孕相关的社会人口学和身体功能特征; 2.回顾在一个学术医疗中心的高风险产科计划的病历，以描述产前过程，劳动和交付，出生结果的经验，妇女的身体残疾和妇女的社会人口和身体功能特征;和3。探讨与妇女对残疾如何影响怀孕经历的看法有关的主题，包括患者因素（例如，关于怀孕的感知和期望，残疾身份，分娩经历），患者对临床医生因素的感知（例如，临床医生在怀孕、分娩和分娩期间以及产后期间的感知态度），以及环境因素（例如， 病人对怀孕期间和产褥期获得服务的看法）。 该项目将代表量化美国身体残疾妇女怀孕率的初步努力。研究结果将提供有关未充分研究的人口的全新信息，这对历史上经常经历保健不平等的弱势妇女群体具有重大的个人重要性。虽然是探索性的，但这项研究将为未来关于身体残疾妇女怀孕的研究奠定必要的基础。它将确定需要解决的问题，并提供关于不同数据来源的效用的信息，以探讨与身体残疾妇女怀孕有关的问题。我们的定性研究结果将提供更多的了解残疾妇女在产科护理过程中面临的困难和障碍，以及解决这些问题的潜在建议。 公共卫生相关性：在美国，超过100万育龄妇女报告身体残疾，主要是由于慢性行动障碍。传闻报告表明，越来越多的身体残疾妇女选择怀孕和生育，但对她们的普遍程度或怀孕和生育经验知之甚少。除了通过采访妇女来深入了解她们的经历外，该项目还将涉及量化美国身体残疾妇女怀孕的全国流行率的初步努力，产生关于经常经历医疗保健差异的未充分研究的妇女群体的全新信息。

DESCRIPTION (provided by applicant): 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.