Decision Making, Disability & Pregnancy: Content Development of a Pregnancy Decision Making Tool for Women with Physical Disabilities Project Summary/Abstract Due to advances in maternal and fetal healthcare and expansion of civil rights, between 100,000 and 200,000 American women with physical disabilities (WWPD) become pregnant each year. Physical disability resulting from injury or illness is characterized by a loss of physical function and mobility. Given potential risks and tradeoffs in health (e.g., pre-term birth, infection) and function (e.g., further loss of mobility and independence), a decision to pursue pregnancy should involve thoughtful deliberation between a woman and her clinicians. Unfortunately, enduring stigma continues to influence the experience of many WWPD seeking counsel about pregnancy. Clinicians' limited competence in disability and a lack of clinical guidelines result in a substandard decision-making process. A pregnancy decision-making tool specifically designed to support WWPD can significantly improve the decision-making process and, ultimately, the quality of healthcare. However, there are no tools designed to meet their complex needs. The proposed work will advance the field by addressing the needs of WWPD in pursuit of two specific aims: 1) determine informational and decision-making needs among a diverse sample of WWPD to develop the scope and content of a pregnancy decision-making tool; and 2) design and pilot test a decision-making tool prototype. Following international standards for decision aid development, we will employ a mixed-methods design using a quantitative survey and qualitative focus groups and interviews to capture informational and decision-making needs and conducting a systematic literature review of the available evidence. Using these data, a decision-making tool prototype will be designed and pilot tested for comprehensibility and usability. The new tool is expected to improve knowledge, clarify values and enhance feeling supported, and positively impact the predisposition towards making a decision. This contribution is significant because it will result in the first pregnancy decision-making tool designed expressly for WWPD. The proposed project is innovative because it represents a substantive departure from the status quo by involving end users at each stage of development and expands on the typical decision-aid patient- physician dyad to better reflect the multidisciplinary needs of WWPD in making decisions about pregnancy. The accomplishment of these aims is at the heart of NICHD's goal of stimulating research to develop evidence- based interventions and supports to achieve optimal pregnancy outcomes for women with disabilities. The tool will directly improve the quality of care by facilitating high quality decision-making. Finally, it will capitalize on the investment of the NIH by accelerating the application of new evidence-based knowledge into the decision- making process about pregnancy in the context of physical disability.
This proposed research is relevant to public health because the development of a decision aid to support women with physical disabilities considering pregnancy will promote the health care quality of an underserved population of women. Such tools are urgently needed to improve the decision making process for women with physical disabilities and clinicians working with them. Thus, the proposed research is relevant to the part of NIH's mission that pertains to developing fundamental knowledge that will help to reduce the burdens of human disability.