The Impact of the Delivery Style of a Down Syndrome Diagnosis on Familial Attitudes
Abstract
Down syndrome is a common genetic disorder that is caused by the nondisjunction of chromosome 21 and usually manifests in the form of a third 21st chromosome. Clinical outcomes of Down syndrome include but are not limited to distinct facial features, intellectual disabilities, and developmental delays. According to numerous studies, parents have expressed that physicians often use a biased and directive tone when explaining their child’s diagnosis of Down syndrome. This often results in ambiguity for parents regarding future treatment plans, decreased self-efficacy when providing for their child, and negative stigmas associated with the condition. The purpose of this study is to investigate the association of positivity, factual accuracy, and support resources provided by medical professionals on familial attitudes upon receiving a Down syndrome diagnosis. A total of 101 parents of children with Down syndrome were recruited via email through established networks of Down syndrome organizations such as GiGi’s Playhouse, Gold Coast Down Syndrome Organization, and On My Own for the study. Online REDCap questionnaires were administered to participants to assess their perspectives on the diagnostic process. Participant responses were evaluated using a 5-tier Likert scale for analysis. The results of this study may be used to identify the best practices for unbiased diagnostic delivery of Down syndrome to parents. Thus, this can ensure families are well informed about their child's condition and how to manage it.
Faculty Sponsors
Dr. Lucas Hollar, Dr. Julio Llanga, Dr. Kristi Messer
Project Type
Event
Location
Alvin Sherman Library
Start Date
4-3-2024 12:30 PM
End Date
4-4-2024 1:30 PM
The Impact of the Delivery Style of a Down Syndrome Diagnosis on Familial Attitudes
Alvin Sherman Library
Down syndrome is a common genetic disorder that is caused by the nondisjunction of chromosome 21 and usually manifests in the form of a third 21st chromosome. Clinical outcomes of Down syndrome include but are not limited to distinct facial features, intellectual disabilities, and developmental delays. According to numerous studies, parents have expressed that physicians often use a biased and directive tone when explaining their child’s diagnosis of Down syndrome. This often results in ambiguity for parents regarding future treatment plans, decreased self-efficacy when providing for their child, and negative stigmas associated with the condition. The purpose of this study is to investigate the association of positivity, factual accuracy, and support resources provided by medical professionals on familial attitudes upon receiving a Down syndrome diagnosis. A total of 101 parents of children with Down syndrome were recruited via email through established networks of Down syndrome organizations such as GiGi’s Playhouse, Gold Coast Down Syndrome Organization, and On My Own for the study. Online REDCap questionnaires were administered to participants to assess their perspectives on the diagnostic process. Participant responses were evaluated using a 5-tier Likert scale for analysis. The results of this study may be used to identify the best practices for unbiased diagnostic delivery of Down syndrome to parents. Thus, this can ensure families are well informed about their child's condition and how to manage it.
