Improving Support for Black and Hispanic New and Expectant Parents
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Winter 2023 Newsletter
Disseminating Patient Centered Outcomes Research Results about Disabilities to Black and Hispanic New and Expectant Parents of Children with Down Syndrome
Between 2022-2023, we held community conversations with patient advocacy leaders and Black and Hispanic parents of children with Down syndrome to get their input on helpful practices for medical providers and advocacy organizations to use when supporting new and expectant parents and sharing research-based information. Then, we shared the parent recommendations with health equity experts and medical providers to identify strategies, platforms, and formats to better meet the needs of Black and Hispanic new and expectant parents of children with DS.
Below is a summary of strategies identified by parents and interdisciplinary experts so that medical and advocacy organizations can improve their support for Black and Hispanic new and expectant parents of children with DS.
Read a summary about the project: Patient Centered Outcomes Research Project
“These White Papers were funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EADI-24186). The statements presented in these white papers are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee
The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing
Our team 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.
Read and watch popular media coverage of the article here:
- UK Now article by Linda Travis: UK study: Biases in Down syndrome diagnosis leave lasting impact on families
- Impact Ethics by Stephanie Meredith: NON-DIRECTIVE PRENATAL COUNSELING: A MYTH UNDER THE SHROUD OF ABLEISM
- Stephanie Meredith | Love Is Stronger Than Fear podcast by Amy Julia Becker
- HELEN article: Improving Trauma & Disability Bias in Prenatal Screening
Evidence-based Online Disability 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 140 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.
