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

理解和支持影响认知的发育障碍女性的生育决定

• 批准号: 10274202
• 负责人: Willi HORNER-JOHNSON
• 金额: $ 49.03万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-21 至 2026-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10274202
• 关键词: Address; Adult; Affect; Child; Choice Behavior; Clinical; Clinical Trials; Cognition; Collaborations; Communication; Comprehension; Conflict (Psychology); Data; Decision Aid; Decision Making; Development; Developmental Disabilities; Disadvantaged; Face; Funding; Future; General Population; Goals; Health; Health behavior; Healthcare; Individual; Infant; Interview; Investigation; Knowledge; Libraries; Mammographic screening; Maternal and Child Health; Medical; Methods; National Institute of Child Health and Human Development; Online Systems; Operative Surgical Procedures; Outcome; Participant; Patients; Pattern; Planned Pregnancy; Population; Pre-Eclampsia; Preconception Care; Pregnancy; Pregnancy Outcome; Premature Birth; Preparation; Process; Readiness; Research; Research Project Grants; Resources; Risk; Sampling; Self Efficacy; Subgroup; Surveys; Target Populations; Time; Trust; Vision; Woman; Work; adverse outcome; adverse pregnancy outcome; design; disability; efficacy testing; evidence base; experience; financial decision making; healthy pregnancy; improved; innovation; maternal stress; motherhood; novel; peer; pregnant; prevent; reproductive; smoking cessation; sociodemographic group; support tools; tool; tool development; unintended pregnancy; usability; web interface; women with disabilities

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.

项目概要 患有影响认知的发育障碍 (DD-C) 的妇女的怀孕往往是无计划的， 这可能会导致该人群中观察到的不良妊娠结局。现存的 研究表明，患有 DD-C 的女性生殖知识有限，在生育方面面临巨大障碍 全面的孕前护理，很少积极参与生殖决策， 并经常被劝阻考虑怀孕或成为母亲。这种组合的缺点 让患有 DD-C 的女性无法就怀孕计划做出明智的决定，并让她们陷入困境 存在意外怀孕和不良妊娠结局的风险。目前没有定制资源 满足 DD-C 女性的需求，帮助她们做出明智的、基于证据的决定，尝试或 预防怀孕。缺乏关于患有 DD-C 的女性需要提供的具体信息的数据 怀孕计划决策以及以以下方式呈现相关信息的最佳方法： 患有 DD-C 的女性会理解、认同和信任。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。在该项目中，总体目标是评估怀孕计划的需求和决定因素 DD-C 女性的决策并开发易于使用的妊娠决策支持工具。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和优先级设置 DD-C 女性怀孕过程； 2) 描述当前怀孕知识和 理解在多州 DD-C 女性样本中呈现信息的不同方法； 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，因为它是第一个调查人际关系的项目 信息框架与 DD-C 女性理解和信任程度之间的关系 信息。该项目的预期成果是一种新颖的、合理的工具来优化 DD-C 女性的妊娠时机和结局。该工具将具有确定的可用性和 在我们的目标人群中可接受，并将为未来的临床试验功效测试做好准备。这 拟议的研究很重要，因为它将确定哪些方法对于沟通最有效 向患有 DD-C 的女性提供医疗信息——该项目的积极影响不仅限于怀孕 决策。