Understanding and Supporting Reproductive Decisions Among Women with Developmental Disabilities that Affect Cognition

项目总结 患有影响认知的发育障碍(DD-C)的妇女怀孕通常是计划外的， 这可能是在这一人群中观察到的不良妊娠结局的原因之一。现有 研究表明患有DD-C的妇女生殖知识有限，面临着巨大的障碍 全面的怀孕前护理，很少作为生殖决策的积极参与者， 而且经常被劝阻，不再考虑怀孕或成为母亲。这种劣势的结合 使患有DD-C的女性在做出关于怀孕计划的明智决定时准备不足，并将她们 有意外怀孕和不良妊娠结局的风险。目前，还没有量身定做的资源 以帮助患有DD-C的女性做出明智的、基于证据的决定 防止怀孕。缺乏关于患有DD-C的妇女需要做出的具体信息的数据 妊娠计划决策和以下列方式呈现相关信息的最佳方法 患有DD-C的女性会理解、相处和信任。这项工作的长期目标是促进知情的， 在患有DD-C的妇女中参与怀孕决策以改善母婴健康 结果。在这个项目中，总体目标是评估怀孕计划的需求和决定因素。 在患有DD-C的妇女中进行决策，并开发一种可访问的怀孕决策支持工具。具体来说， 我们的目标是：1)确定信息需求、影响怀孕决策的因素以及优先顺序设置 患有DD-C的妇女的妊娠过程；2)表征当前的怀孕知识和 对患有DD-C的妇女的多态样本中不同信息呈现方法的理解； 3)设计患者友好的交互式决策辅助工具，促进循证怀孕决策- 由患有DD-C的女性制作。本申请中提出的研究具有创新性，因为该项目是 与患有DD-C的女性合作进行的，因为它是第一个调查关系的 在信息的框架和患有DD-C的女性理解和信任的程度之间 信息。这个项目的预期结果是一个新颖的、智力上合适的优化工具 DD-C患者的怀孕时间和结局。该工具将具有既定的可用性和 在我们的目标人群中可接受，并将准备在未来的临床试验中进行疗效测试。这个 提出的研究具有重要意义，因为它将确定哪些方法是最有效的沟通方式 向患有DD-C的妇女提供医疗信息--这一项目的积极影响延伸到怀孕以外 决策。

PROJECT SUMMARY Pregnancies among women with developmental disabilities that affect cognition (DD-C) are often unplanned, which may contribute to the poor pregnancy outcomes that have been observed in this population. Existing research indicates that women with DD-C have limited reproductive knowledge, face substantial barriers to comprehensive preconception care, are rarely engaged as active participants in reproductive decision-making, and are frequently discouraged from considering pregnancy or motherhood. This combination of disadvantages leaves women with DD-C ill-prepared to make informed decisions about pregnancy planning and places them at risk of unintended pregnancies and adverse pregnancy outcomes. Currently, there are no resources tailored to the needs of women with DD-C to help them make informed, evidence-based decisions about attempting or preventing pregnancy. Data are lacking on the specific information women with DD-C need for making pregnancy planning decisions and the optimal approaches for presenting relevant information in a way that women with DD-C will understand, relate to, and trust. The long-term goal of this work is to promote informed, engaged pregnancy decision-making among women with DD-C to improve maternal and child health outcomes. In this project, the overall objective is to assess needs and determinants of pregnancy planning decisions among women with DD-C and develop an accessible pregnancy decision support tool. Specifically, we aim to: 1) Identify the information needs, factors influencing pregnancy decision-making, and priority setting processes regarding pregnancy in women with DD-C; 2) Characterize current pregnancy knowledge and comprehension of different methods of presenting information in a multi-state sample of women with DD-C; and 3) Design a patient-friendly interactive decision aid to promote evidence-based pregnancy decision- making by women with DD-C. The research proposed in this application is innovative because the project is conducted in collaboration with women with DD-C and because it is the first to investigate relationships between framing of information and the extent to which women with DD-C understand and trust that information. The expected outcome from this project is a novel, intellectually appropriate tool to optimize pregnancy timing and outcomes for women with DD-C. The tool will have established usability and acceptability within our target population and will be ready for future efficacy testing in a clinical trial. The proposed research is significant because it will determine which methods are most effective for communicating medical information to women with DD-C – a positive impact of this project that extends beyond pregnancy decision-making.