Program

Physician Assistant M.S.

Number of Pages

62

Year Approved

2022

First Advisor

Klein, Alicia

Abstract

Approximately 6,000 babies are born with Down syndrome each year in the United States – with an increasing prevalence. The literature suggests that negative societal attitudes surrounding the diagnosis of Down syndrome are often reflected in the terminology used by the medical providers delivering the diagnosis and that medical providers lack training regarding appropriate counseling. Jack’s Basket is a non-profit organization that aims to celebrate babies with Down syndrome and connect families to local resources. The researchers partnered with the organization to further explore the relationship between the diagnosis delivery method and how the recipient perceives the diagnosis. Jack’s Basket also provides educational presentations for medical providers on how to deliver unexpected news using neutral terminology to avoid implicit bias. However, their presentations lacked specific data regarding the diagnosis delivery and its effect on parental acceptance of the child. Therefore, the researchers assisted Jack’s Basket in creating a survey for the organization to gain a better understanding of the Down syndrome diagnosis and receive feedback on their current programming. The researchers also secured Institutional Review Board (IRB) approval of the survey to ensure an ethical data collection process with appropriate informed consent. This survey was sent to approximately 4,000 families in Minnesota who received a Jack’s Basket between the years of 2018-2021. The survey achieved a 13.1% response rate. The survey results allowed Jack’s Basket to identify areas for improvement in their programing, including communication to new members and volunteer engagement. Also, the data collected on diagnosis delivery supports further development of the organization’s educational initiatives to reduce stress and anxiety among medical providers, so they can better deliver the prenatal diagnosis of Down syndrome using neutral terminology.

Degree Name

Masters of Science in Physician Assistant

Document Type

Masterʼs thesis

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