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

基本信息

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
项目类别：
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

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

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项目摘要

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.

项目摘要影响认知（DD-C）的发育障碍女性的怀孕通常是计划外的，这可能导致该人群中观察到的妊娠结局不良。现存的研究表明，患有DD-C的女性的生殖知识有限，面临着实质性的障碍全面的孕前护理很少作为积极参与者从事生殖决策，并且经常不愿考虑怀孕或孕产。这种灾难的结合让DD-C的妇女准备不足以做出有关妊娠计划的明智决定并将其放置有意外怀孕和不良怀孕结果的风险。目前，没有量身定制的资源满足DD-C妇女的需求，以帮助她们做出知情的，基于证据的决定或预防怀孕。缺乏有关DD-C需要的特定信息的数据怀孕计划决策和最佳方法，以呈现相关信息的方式患有DD-C的妇女将理解，与和信任。这项工作的长期目标是促进知情， DD-C女性的怀孕决策以改善产妇和儿童健康结果。在这个项目中，总体目标是评估需求并确定妊娠计划 DD-C妇女之间的决策并开发可及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，因素影响怀孕决策和优先设定 DD-C女性怀孕的过程； 2）特征当前的怀孕知识和理解不同方法在DD-C女性的多状态样本中提出信息的理解； 3）设计对患者友好的互动决策援助，以促进基于证据的怀孕决策 - 由DD-C的女性制造。本应用程序中提出的研究具有创新性，因为该项目是与DD-C女性合作进行，因为这是第一个调查关系的人在信息的框架和DD-C妇女了解和信任的程度之间信息。该项目的预期结果是一种新颖的，具有直观适当的工具，可优化 DD-C女性的怀孕时间和预后。该工具将确定可用性和我们目标人群的可接受性，并准备在临床试验中进行未来的效率测试。拟议的研究很重要，因为它将确定哪些方法最有效地进行交流 DD-C的妇女的医疗信息 - 该项目的积极影响，该项目延伸到怀孕之外决策。