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

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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.