ArticleBMJ paediatrics open2024
Perspectives of parents with lived experience of cytomegalovirus infection, on universal newborn screening for congenital cytomegalovirus (cCMV) in Canada: a patient-led qualitative study.
Article in BMJ paediatrics open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Impact of a Health Research Training Program on Patient and Community Partners, and Researchers: A Qualitative Evaluation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- The impact of congenital cytomegalovirus infection among families and caregivers: A qualitative analysis of responses to a public consultation on newborn screening in the UK.Journal of health services research & policy · 2026Article
- Universal Dried Blood Spot Screening for Congenital Cytomegalovirus: A Slovenian National Implementation Pilot.International journal of neonatal screening · 2026Article
- Why do we have a vaccine for measles, but not cytomegalovirus (CMV)?PLoS pathogens · 2026Article
- Exploring hygiene practices, prenatal recommendations and parental attitudes towards congenital cytomegalovirus prevention and screening in Sweden.BMJ paediatrics open · 2025Article
- Outcomes of a Population-Based Congenital Cytomegalovirus Screening Program.JAMA pediatrics · 2025Article
- A high-sensitivity, high-throughput newborn screening assay for congenital cytomegalovirus-is it time for universal screening in the United Kingdom?Frontiers in pediatrics · 2025Article
Corrections and comments
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Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo understand parental perspectives regarding universal newborn screening (UNS) for congenital cytomegalovirus (cCMV) in Canada.
designA qualitative, patient-led study using the Patient and Community Engagement Research approach consisting of online focus groups and in-depth individual interviews to understand parental preferences regarding UNS for cCMV. Data were analysed iteratively using inductive thematic analysis and narrative story analysis.
settingCanada-wide study conducted via video conference from October to December 2023. PATIENTS: 12 participants from five Canadian provinces who self-identified as 18 years of age or older and as having parental lived experience with cytomegalovirus (CMV) or cCMV participated in the study.
resultsWe identified three themes: (1) attitudes about UNS for cCMV, including participants' unanimous support for UNS and confirmation that parental anxiety is not a deterrent for screening, (2) cCMV diagnosis, including the importance of coupling cCMV diagnosis with access to treatment and medical support and (3) awareness of cCMV, where participants shared their frustration about the lack of public and pregnant people's awareness of cCMV.
conclusionsParental anxiety is not a deterrent for UNS for cCMV. Children with cCMV and their families deserve every opportunity to attain their best possible outcomes. UNS offers children with cCMV access to early intervention if they need it, and also helps to raise awareness and education to prevent future CMV infections.
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