Fall 2023 Newsletter

New Journal Publication!

The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing

Our team has now published an important paper on the experiences of patients learning about a prenatal diagnosis of Down syndrome and the information provided to them when receiving prenatal screening results. We also examined how implicit and explicit bias impacted the information they received. The article “The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing” has been recently published in the Disability and Health Journal. You can access the article for free with this link through October 10, 2023! This is the largest study to date of parents who received a prenatal diagnosis of Down syndrome with 242 respondents, and all received their diagnosis between 2016-2021.

The paper was co-authored by Stephanie Meredith, MA; Harold Kleinert, EdD; Sierra Weiss, MA, and Cameron Tyrrell, MEd., MA, and we received significant support in conducting this research from local Down syndrome organizations and the Down Syndrome Diagnosis Network. 

The purpose of this study was to find out what recommendations clinicians are following when delivering prenatal screening results and what factors influence the information provided. What we found was that bias significantly impacted the provision of information following screening results.

We learned the following:

• 61.3% of obstetric providers delivered the diagnosis as bad news or said “I’m sorry.” Researchers used this response as a measure for implicit bias.
• Obstetric providers were most likely to discuss medical issues (64%) and reproductive options (76%), and less than 40% discussed supports and services and life outcomes.
• Clinicians who demonstrated implicit bias were significantly less likely than their counterparts to provide more comprehensive prenatal care, information about life outcomes, information about Down syndrome advocacy organizations, available supports and services, and condition-specific resources. 
• 51% of unbiased obstetric providers gave patients accurate, up-to-date, and balanced resources about DS at the moment of diagnosis in language [they] could understand while only 17% of biased clinicians did so.
• Parents described both implicit and explicit bias when receiving prenatal screening results in the past 7 years. They described being told things like “[you] could still miscarry, that nature could still correct its mistake” and being asked questions like “how does it make you feel to know that you will die and leave your baby dependent on the state? How do you feel about your child not having good quality of life?” To read more, view the tables in the article.

We would like to thank all of the co-authors, research partners, and research participants for sharing these important stories and hope this research can highlight where we can address biases. We have been so impressed with the impact of the research by Iezzoni et al. about general bias regarding disability in medical practice, and we hope this research will prompt similar efforts to improve education and support for patients and clinicians in subspecialities like obstetrics and genetics. 

Feel free to share our study with any colleagues and friends who might be interested.  

FREE NSGC CEU Credits Available
for Lettercase Online Training Module
Thanks to the National Down Syndrome Society

First 70 registrants receive 0.5 FREE CEUs upon completion of this evidence-based online course courtesy of the National Down Syndrome Society!

You can register for this course at https://www.hdilearning.org/product/pht-206/. The cost of the CEU credits for the first 70 people to register and complete the course will be generously covered by the National Down Syndrome Society. Afterwards, the associated cost is $50 per person.

We hope this is a valuable resource for clinicians who want to strengthen their understanding of disability issues, the history of disability rights, and best practices for communicating about a prenatal or postnatal diagnosis.

This online module can be completed at your own pace and includes the following features:

• online lessons
• instructional videos
• video podcasts 
• reflection activities
• links to additional helpful resources

Special thanks to our reviewers: Angela Trepanier, MS, CGC, at Wayne State University; Dr. Brian Skotko, MD, MPP, from the Massachusetts General Hospital Down Syndrome Program; Blair Stevens, MS, CGC, from the University of Texas Houston; Cori Feist, MS, CGC, from Oregon Health & Science University; Kim Baich from the Down Syndrome Association of Central Ohio; and Stephanie Thompson from the National Down Syndrome Adoption Network.

You can also access our free resources for expectant parents on our Lettercase resources webpage. Get the materials online, in print, or in our app for tablets.

Disseminating Patient Centered Outcomes Research Results about Disabilities to Black and Hispanic New and Expectant Parents

The Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute (HDI) has been awarded a Eugene Washington PCORI Engagement Award by the Patient-Centered Outreach Research Institute (PCORI). Last year we convened meetings with families, advocacy organization leaders, health equity experts, and health professionals to determine and share recommendations for disseminating research to new and expectant Black and Hispanic parents of children with Down syndrome.

This year, we are developing a white paper and online learning module to inform health professionals about the recommended strategies to reach historically underserved communities. We look forward to keeping you posted!