Pregnancy Experience of Women with Physical Disabilities

描述（由申请人提供）：美国有超过100万育龄妇女报告有残疾或在日常生活活动中需要帮助，主要是因为慢性身体损伤导致行动困难。坊间报道显示，越来越多有身体残疾的女性选择怀孕生育。尽管如此，关于美国身体残疾妇女怀孕的普遍程度和她们的产科经历的信息很少。这项混合方法研究的总体目标是为美国慢性身体残疾妇女的怀孕和生育经历提供系统的探索性证据，有三个具体目标：1。分析四个数据来源，每个数据来源都包含不同妇女群体的信息——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）和Sonya Slifka纵向多发性硬化症研究（Slifka）数据库——以探索慢性身体残疾妇女的怀孕率，并确定与怀孕相关的社会人口统计学和身体功能特征；2. 回顾具有高风险产科项目的学术医疗中心的医疗记录，以描述身体残疾妇女的产前过程、分娩和分娩结果经历以及妇女的社会人口统计学和身体功能特征；和3。探讨与女性对残疾如何影响怀孕体验的看法相关的主题，包括患者因素（如对怀孕、残疾身份、分娩体验的看法和期望）、患者对临床医生因素的看法（如在怀孕、分娩和产后期间临床医生的态度）和环境因素(如：患者对孕期和产褥期服务可及性的看法)。这个项目将是量化美国身体残疾妇女怀孕率的初步努力。研究结果将为研究不足的人群提供全新的信息，这对历史上处于不利地位的妇女群体具有重要的个人意义，她们经常在医疗保健方面经历不平等。虽然是探索性的，但本研究将为今后身体残疾妇女怀孕的研究奠定重要的基础。它将确定需要解决的问题，并提供资料说明不同数据来源在探讨与身体残疾妇女怀孕有关的问题方面的效用。我们的定性研究结果将为残疾妇女在产科护理中面临的困难和障碍提供额外的见解，以及解决这些问题的潜在建议。

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.