Abstract Details
9/08/2025 | 11:30 AM - 12:30 PM | Breakout 1 | Thomas H. Swain
Why Didn't You Tell Me About cCMV? What CMV Parents Want Their Healthcare Providers to Know
Abstract Summary
Background: Cytomegalovirus (CMV) infection presents a significant public health challenge. CMV infection is often asymptomatic in healthy individuals, but CMV can have severe consequences when transmitted from pregnant people to their fetus, resulting in congenital CMV (cCMV) infection. In 2021 Canadian professional guidelines for perinatal care providers were updated to recommend that providers discuss cCMV with all patients of childbearing age. In 2023, our patient-led study confirmed that patients want to hear about cCMV from their perinatal care provider, but that is not happening. Methods: Two CMV parents gathered stories from other CMV parents about what they would like their healthcare provider to know about discussing cCMV during pregnancy. Those stories were used to come up with a video script and parents were invited to a filming day to share their story. Our team edited the video into an engaging 90 second video to be shared with perinatal healthcare providers. Results: We co-designed an engaging video with parents of children with cCMV to raise awareness and grab the attention of perinatal healthcare providers to ask them the thought-provoking question “why didn’t you tell me about cCMV?”. This video will be a conversation starter as we continue to explore this topic with providers. Conclusion: Parents want their healthcare providers to talk to them about cCMV prevention during pregnancy. More work needs to be done to raise awareness in the general population and to understand why providers do not consistently talk about cCMV with their pregnant patients.
Learning Objectives
- Explore what parents would like their healthcare providers to know about discussing cCMV with them during pregnancy.
- Discuss how patient-led storytelling can influence healthcare provider communication and patient care practices.
- Reflect on the importance of patient involvement in shaping healthcare communication and policy changes.
Presentation
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Presenters
Maria Castrellon Pardo | Co-Author
mariacastrellonpard@ucalgary.ca;
Maria Castrellon Pardo is a certified Patient and Community Engagement Researcher (PaCER, University of Calgary). She holds a Bachelor's degree in psychology from Universidad de la Sabana (Colombia) and a post-diploma in Health and Community Services Management from Bow Valley College. The combination of her lived experience as a mom, her training, and her trajectory promoting behavioural changes through community engagement interventions with a focus on knowledge translation and participatory-action research brings to our team a meaningful connection to the community and a liaison to patients. Maria is committed to maternal health improvement based on patient-oriented research as a way to empower and gather diverse voices to make transformations that respond to the real needs of pregnant patients and their families.
ASHA DISCLOSURE
Financial -
Nonfinancial -
AAA DISCLOSURE
Financial - No relevant financial relationship exists.
Medea Myers-Stewart | Co-Author
medea.myersstewar1@ucalgary.ca;
Medea Myers-Stewart holds a Master of Public Health (MPH) degree specializing in Health Promotion from the University of Alberta. She also holds a Bachelor of Arts degree in Sociology with a focus on gender and sexuality from the University of Victoria. Medea is a passionate advocate for the health and well-being of women and 2SLGBTQIA+ communities. She holds extensive experience developing initiatives focused on healthy sexuality and reproductive care. Medea is skilled in community engagement, program development, facilitation, and digital health communications.
ASHA DISCLOSURE
Financial -
Nonfinancial -
AAA DISCLOSURE
Financial - No relevant financial relationship exists.
Monica Surti | Co-Author
monica.surti@ucalgary.ca;
Monica Surti is a Master of Public Health graduate specializing in Health Promotion from the University of Alberta. She also holds a First-class Honours Bachelor of Health Sciences degree from the University of Calgary. Monica's dedication to health policy and advocacy stems from her involvement in various initiatives combating anti-racism and advocating for equal healthcare access in Alberta. With a passion for health literacy, Monica brings a specialized focus on Equity, Diversity, and Inclusion (EDI) to the development and testing of VIP Canada and healthcare provider educational materials.
ASHA DISCLOSURE
Financial -
Nonfinancial -
AAA DISCLOSURE
Financial - No relevant financial relationship exists.
Eliana Castillo | Co-Author
castillo@ucalgary.ca;
Dr. Eliana Castillo is Clinical Associate Professor at the University of Calgary, where her medical and teaching practice focuses on medical disorders in pregnancy and maternal infections. She has been active in the area of immunization during pregnancy, congenital CMV infection and maternal mortality at a local and national level through her work with the Society of Obstetrics and Gyneacologists of Canada, Alberta Perinatal Health Program and National Advisory Committee for Immunization.
ASHA DISCLOSURE
Financial -
Nonfinancial -
AAA DISCLOSURE
Financial - No relevant financial relationship exists.
Marcia Bruce | POC-Point of Contact, Primary Presenter, Co-Author
marcia.bruce@ucalgary.ca;
Marcia Bruce is a patient research partner and a busy mom of three. After being diagnosed with celiac disease, she became interested in health research and transforming patient experience, which inspired her to become a Patient and Community Engagement Researcher (PaCER) through the University of Calgary. Marcia is currently contributing to a number of research projects and initiatives with Alberta Health Services and the University of Calgary in the areas of digestive health, chronic pain, women's health and reproductive infectious diseases, including CMV.
ASHA DISCLOSURE
Financial - No relevant financial relationship exists.
Nonfinancial - No relevant nonfinancial relationship exists.
AAA DISCLOSURE
Financial - No relevant financial relationship exists.
Laija Beaulieu | Co-Presenter, Co-Author
lbeauli1@lakeheadu.ca;
Laija Beaulieu is a current PhD student in the Health Sciences program at Lakehead University in Thunder Bay, Ontario, Canada. Thunder Bay is located in Northwestern Ontario and is considered a remote and rural city that serves many surrounding communities. Laija’s academic journey is inspired by her son, who is affected by cCMV and has profound bilateral deafness. Her son has received cochlear implants, which have restored his hearing, and Laija and her family are deeply grateful for this life-changing technology. However, living in a rural area has presented challenges in accessing healthcare for her family. Laija’s research takes a qualitative approach, focusing on raising awareness of CMV and cCMV, as well as advocating for equitable access to CMV-related healthcare services in remote and rural communities, which often face limited access to quality care.
ASHA DISCLOSURE
Financial - No relevant financial relationship exists.
Nonfinancial - No relevant nonfinancial relationship exists.
AAA DISCLOSURE
Financial - No relevant financial relationship exists.
Lisa Robinson | Author
play-on-words@hotmail.com;
Speech Language Pathologist
Mother
ASHA DISCLOSURE
Financial -
Nonfinancial -
AAA DISCLOSURE
Financial - No relevant financial relationship exists.