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

项目摘要 患有影响认知的发育障碍（DD-C）的妇女怀孕往往是计划外的， 这可能导致在该人群中观察到的不良妊娠结局。现有 研究表明，患有DD-C的妇女生殖知识有限， 全面的孕前保健，很少积极参与生殖决策， 并且经常被劝阻不要考虑怀孕或做母亲。这种不利因素的组合 使患有DD-C的妇女无法对怀孕计划做出明智的决定， 面临意外怀孕和不良妊娠结局的风险。目前，没有定制的资源 DD-C女性的需求，以帮助她们做出明智的，基于证据的决定， 预防怀孕。缺乏关于DD-C妇女需要提供的具体信息的数据。 妊娠计划决策和提供相关信息的最佳方法， 女性DD-C会理解，涉及，和信任。这项工作的长期目标是促进知情、 参与DD-C妇女的妊娠决策，以改善孕产妇和儿童健康 结果。该项目的总体目标是评估怀孕计划的需求和决定因素 帮助患有DD-C的女性做出怀孕决策，并开发一种易于使用的怀孕决策支持工具。具体地说， 我们的目标是：1）确定信息需求，影响怀孕决策的因素，以及优先事项的设定 关于DD-C女性妊娠的过程; 2）描述当前妊娠知识的特征， 在患有DD-C的女性的多状态样本中理解不同的呈现信息的方法; 3）设计一个患者友好的交互式决策辅助工具，以促进基于证据的妊娠决策- 是由患有DD-C的女性制作的。本申请中提出的研究是创新的，因为该项目是 与患有DD-C的妇女合作进行，因为它是第一个调查关系的研究， 信息框架与DD-C女性理解和信任 信息.这个项目的预期成果是一个新颖的，智力上适当的工具，以优化 DD-C妇女的妊娠时机和结局。该工具将具有既定的可用性， 在我们的目标人群中的可接受性，并将准备在临床试验中进行未来的有效性测试。的 拟议中的研究意义重大，因为它将确定哪些方法是最有效的沟通 向患有DD-C的妇女提供医疗信息-该项目的积极影响超出了怀孕期 决策的

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.