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

> **NIH NIH R01** · OREGON HEALTH & SCIENCE UNIVERSITY · 2021 · $490,337

## Abstract

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.

## Key facts

- **NIH application ID:** 10274202
- **Project number:** 1R01HD105655-01
- **Recipient organization:** OREGON HEALTH & SCIENCE UNIVERSITY
- **Principal Investigator:** Willi HORNER-JOHNSON
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $490,337
- **Award type:** 1
- **Project period:** 2021-09-21 → 2026-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10274202

## Citation

> US National Institutes of Health, RePORTER application 10274202, Understanding and Supporting Reproductive Decisions Among Women with Developmental Disabilities that Affect Cognition (1R01HD105655-01). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10274202. Licensed CC0.

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