The Lurie Institute for Disability Policy is proud to announce two newly funded research projects to improve pregnancy experiences and outcomes for disabled pregnant people.
A Continuing Education Intervention to Address Ableism Among Obstetric Clinicians Providing Perinatal Care
The notion that disabled people would seek pregnancy and motherhood defies long-held social norms and is fraught with echoes of the eugenics movement of early 20th century America. Nevertheless, pregnancy and parenthood are increasingly common among disabled people. Despite the increasing numbers of disabled women having babies, obstetricians often have little training in how best to provide high quality care to this diverse population, documented through perspectives of both obstetric clinicians themselves and women with disabilities. Disabled women often experience worse maternal and child health outcomes than their nondisabled peers. Barriers to optimal care include lack of training and disability knowledge of obstetric clinicians; lack of professional guidelines for providers; provider unwillingness to care for women with disabilities; inaccessible equipment and facilities, poor communication, and ableist attitudes and practices among obstetric health care providers and staff. Furthermore, emerging research suggests that ableist and discriminatory experiences in reproductive care may disproportionately affect disabled women of color. Research, both with disabled women and obstetricians, has identified recommendations for improving care, however, the critical next step have yet to be taken – designing an educational intervention to address these concerns and prepare obstetricians to provide inclusive care.
This study will develop an online continuing education program for practicing obstetricians that addresses ableism and structural ableism in perinatal and postpartum care. The study will first conduct focus groups and key informant interviews to identify essential content and optimal approaches for educating providers about mitigating ableist attitudes, practices, and policies, structural access barriers, and providing perinatal care to a diverse population of disabled patients. Based on these findings, the study team will design an online continuing medical education program and conduct a randomized controlled trial with 200 obstetric providers. Participants will complete assessments prior to training, and at three- and 12-months following completion. The study will measure change in ableist attitudes and clinical policies and practices. Knowledge acquisition, satisfaction with course content, and usability will similarly be evaluated. We will also interview 20 participants about their experiences and revise the program accordingly. We will collaborate with the American College of Obstetricians and Gynecologists (ACOG) to disseminate the final program to practicing obstetricians. This project directly addresses priorities identified by the funding agency to develop and test interventions at a community or health systems level to mitigate adverse health effects of ableism and structural ableism. The expected outcome of this project is an innovative educational intervention to improve provider knowledge to mitigate ableism in perinatal care.
This research is supported by the Eunice Kennedy Shriver National Institute Of Child Health & Human Development of the National Institutes of Health under Award Number R01HD116322.
National Center for Disability and Pregnancy Research
The National Center for Disability and Pregnancy Research (NCDPR), is a cross-disability initiative whose goals are to address gaps in knowledge about pregnancy and disability, enhance the experience of pregnancy in people with disabilities, and promote optimal outcomes for pregnant people with disabilities. The Lurie Institute for Disability Policy was awarded funding to support the National Center for Disability and Pregnancy Research for the next five years. The NCDPR’s objectives are to: 1) leverage existing and new data sources to examine perinatal risks, care, and outcomes by disability status, disability type, and race and ethnicity; 2) scale up and test the efficacy of a preconception education curriculum for women with mobility disabilities; 3) develop and pilot an accessible online prenatal education program for Deaf pregnant people; 4) examine the impact of Medicaid coverage of doula care on the perinatal experiences and outcomes of disabled people; and 5) establish quality indicators and create an e-learning module for mental health care providers to improve perinatal mental health care for disabled women. Anticipated outcomes include: 1) research findings and evidence-based recommendations to help shape optimal perinatal policy and practice guidelines; 2) tested strategies for providing targeted, tailored, effective supports for pregnant people with disabilities. Knowledge translation activities employing state-of-the-art technologies will be guided and informed by the NCDPR Community Advisory Board and supported by national partners comprised of disability organizations and maternal and child health organizations. Products will include publications, presentations, and training webinars for research, clinical, policy, and community audiences. Research findings and training products will be available through NCDPR’s accessible website.
This research is supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DPHF0013). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS).