Pregnancy Experience of Women with Physical Disabilities

描述(由申请人提供)：美国有100多万育龄妇女报告残疾或在日常生活活动中需要帮助，主要是因为慢性身体残疾导致行动不便。坊间报道表明，越来越多的肢体残疾妇女选择怀孕和生育。尽管如此，关于美国肢体残疾女性怀孕的流行率以及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提供关于美国慢性肢体残疾妇女怀孕和生育经历的系统的探索性证据，具体有三个目标：1.分析四个数据来源，每个数据来源包含不同类别妇女的信息--国家健康访谈调查(NHIS)、全国家庭成长调查(NSFG)、国家脊髓损伤数据库(NSCID)和索尼娅·斯利夫卡纵向多发性硬化症研究(Slifka)数据库--以探索慢性肢体残疾妇女的妊娠率，并确定与怀孕相关的社会人口学和身体机能特征；2.在具有高危产科计划的学术医学中心查阅病历，描述肢体残疾妇女的产前病程、分娩和分娩、分娩结局以及妇女的社会人口学和身体机能特征；3.探讨与妇女对残疾如何影响怀孕体验的看法有关的主题，包括患者因素(例如，对怀孕的看法和期望、残疾身份、分娩经历)、患者对临床医生因素的看法(例如，临床医生在怀孕、分娩和分娩期间以及产后的即时态度)，以及环境因素(例如，患者对怀孕期间和产褥期可获得服务的看法)。该项目将代表着量化美国肢体残疾女性怀孕流行率的初步努力。这一结果将提供关于研究不足的人口的全新信息，这对经常经历医疗保健差距的历史上处于不利地位的妇女群体具有重大的个人重要性。这项研究虽然是探索性的，但将为未来关于肢体残疾女性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在探讨与残疾妇女怀孕有关的问题方面的效用的信息。我们的定性发现将为残疾妇女在产科护理过程中面临的困难和障碍提供更多的洞察力，以及解决这些问题的潜在建议。 与公共健康相关：美国有100多万育龄妇女报告身体残疾，主要是由于慢性行动不便。坊间报道表明，越来越多的肢体残疾妇女选择怀孕和生育，但对她们的患病率或她们的怀孕和生育经历知之甚少。除了通过采访妇女来洞察她们的经历外，该项目还将涉及一项初步努力，以量化美国肢体残疾妇女的全国怀孕率，产生关于研究不足的妇女群体的全新信息，这些妇女经常在医疗保健方面存在差异。

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.