New research highlights the importance of psychological care
Congenital cytomegalovirus (cCMV) is the most common congenital viral infection and the leading infectious cause of childhood hearing loss. For some children, it can also affect development, vision, or movement. While medical pathways for diagnosis and monitoring are vital, families often describe the experience of cCMV as emotionally overwhelming, isolating, and filled with uncertainty, an impact that has historically received far less attention.
New research from a specialist cCMV clinic in London explores how families experience congenital CMV and examines whether embedded clinical psychology could be a helpful and feasible model of care.
The emotional impact of a cCMV diagnosis
For many families, a diagnosis of congenital CMV comes unexpectedly, often disrupting the newborn period and changing early expectations of parenthood. Parents in the study described shock, grief, anxiety, and fear about the future, particularly given the uncertainty around how cCMV might affect their child over time.
The research found that parental distress was not linked to how severe a child’s condition was, but instead to how parents understood, processed, and adjusted to the diagnosis. Mothers, in particular, reported significantly higher levels of stress than fathers, highlighting the need for targeted and accessible emotional support.
“Ongoing uncertainty, rather than medical severity, was a key driver of stress for families affected by congenital CMV.”
Psychology as part of cCMV care
Thirty-four families attending a specialist cCMV clinic were offered access to clinical psychology alongside medical care. This included individual, formulation-based psychological support and facilitated opportunities for parent peer connection.
Parents reported that psychology sessions provided a protected space to explore the emotional impact of cCMV, ask difficult questions, and feel heard and validated. Following psychology input, parents felt more confident in understanding cCMV and better able to manage their child’s needs.
However, emotional well-being continued to vary for many families, reflecting the ongoing uncertainty of cCMV and the possibility of late-emerging difficulties. This finding reinforces the importance of ongoing, flexible support rather than one-off interventions.
“Parents valued clinical psychology as a safe space to process the emotional impact of congenital CMV and to feel less alone.”
Shared experiences and raising awareness
A strong theme across the research was isolation. Many parents felt that few people, including some professionals, truly understood cCMV. Opportunities to connect with other families affected by cCMV were particularly valued and helped reduce feelings of isolation.
Parents also expressed a strong desire to raise awareness of cCMV to improve understanding, reduce delays in diagnosis, and ensure families receive better information and support from the start.
Key findings from the research
At a glance
- Parents of children with congenital CMV experience high levels of stress, particularly following diagnosis.
- Mothers reported significantly higher stress than fathers.
- Parental well-being was linked to how families experienced and made sense of the diagnosis, not to disease severity.
- Access to clinical psychology support improved parents’ confidence, understanding, and ability to manage their child’s needs.
- Emotional well-being often fluctuated due to the ongoing uncertainty associated with congenital CMV.
- Five key themes emerged from parents’ experiences:
- Processing the diagnosis
- Disruption to the newborn period
- Challenges in relationships with healthcare services
- Feeling isolated from others with shared experience
- A strong desire to raise awareness of congenital CMV
- Families strongly valued psychological support and peer connection as part of CMV care.
Why this research matters
This study adds to growing evidence that caring for a child with congenital CMV affects far more than physical health alone. Supporting parental well-being is not an optional extra, it is a crucial part of helping children and families thrive.
The findings support the inclusion of embedded clinical psychology within cCMV services and underline the importance of improving awareness of congenital CMV across healthcare systems. Earlier recognition, clearer information, and emotionally informed care have the potential to reduce distress and improve long-term outcomes for families.
CMV Action will continue to advocate for greater awareness, better pathways of care, and holistic support for everyone affected by congenital CMV.
Click here to read the research paper: Exploring feasibility of clinical psychology as a model of care for families affected by congenital cytomegalovirus
Why this research matters for CMV screening
This research shows that the greatest source of distress for families affected by congenital CMV is uncertainty, not the diagnosis itself. Many parents described months or years without answers, limited professional understanding, and delayed access to support.
Earlier identification through CMV screening could:
Reduce uncertainty during the newborn period
Allow families to access information, monitoring, and support sooner
Reduce psychological distress linked to delayed diagnosis
Create clearer and more equitable pathways of care
These findings support CMV Action’s response to the UK National Screening Committee consultation on CMV screening, which calls for improved early identification and better support for families.