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10/09/2023  |   11:45 AM - 12:10 PM   |  6613

Addressing the Gaps – Knowledge among Families Affected by congenital CMV

Abstract Summary

The role of advocate is familiar to many parents. For parents of disabled children, the advocacy role develops to a frequency and complexity that other parents do not usually face. This is likely due to the many interactions which parents and other caregivers of disabled children have with professionals, as well as the complexity of negotiating for children during such encounters. In most cases, caregivers enter the arena of disability with no previous medical knowledge. In this presentation, we focus on the learning curve that parents experience as they gain mastery over biomedical facts, care-related roles, and rights and responsibilities that come with parenting children born with congenital CMV (cCMV). It has been demonstrated elsewhere that there are significant gaps in health professional knowledge of CMV prevention, transmission and consequences. The first aim of this study was thus to collect data on caregiver knowledge of cCMV. A second aim was to assess the sources that caregivers use to access knowledge and raise awareness of cCMV. Members of cCMV support groups on Facebook (e.g., CMV mommies, CMV family support) were sent an online survey to assess their knowledge of cCMV. Preliminary results indicate that caregivers have greater knowledge about CMV transmission than the general educated public. However, there is significant variation in caregiver understanding around several key topics, including vaccine science, CMV transmission, and the risk that children born with cCMV pose to seronegative women. Caregivers report that common sources of information include health care professionals and social media. We address the ways in which national and state advocacy groups can address these knowledge gaps to empower and support families affected by cCMV.

Learning Objectives

  • Discuss CMV knowledge in families affected by congenital CMV
  • Address gaps in CMV knowledge including: CMV vaccine science, asymptomatic excretion of CMV by congenitally affected infants
  • Identify how improved understanding of CMV among families affected by congenital CMV will improve public health outcomes




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Seth Dobson | Co-Author

Seth Dobson received his PhD in Anthropology from Washington University in St. Louis. He is currently an analytics consultant for a marketing technology firm. He has industry expertise as a data analyst in financial services and telecommunications. Before joining the corporate world, Dr. Dobson was assistant professor of anthropology at Dartmouth College. His academic research focused on primate communication and brain evolution. Dr. Dobson and his wife Dr. Kathleen Muldoon live with their three beautiful children in sunny Phoenix, AZ. His middle son was born with congenital cytomegalovirus and is multiply-disabled as a result.


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Nonfinancial -


Financial - No relevant financial relationship exists.

Kathleen Muldoon | Primary Presenter

Kathleen M. Muldoon, Ph.D. is an anthropologist and Professor of Anatomy at Midwestern University, Glendale. Through her experiences with disability, she became interested in science communication, and the effectiveness of professional education on public health knowledge, empathy, and humanity in medicine. She is the proud parent of three children: her middle child has multiple disabilities due to congenital cytomegalovirus (cCMV).


Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.


Financial - No relevant financial relationship exists.