Imperial College is carrying out research which aims to improve the psychological and social well-being of children and their families who are affected by congenital cytomegalovirus (cCMV). The project will provide clinical psychology support alongside the congenital infection clinic at Imperial College Healthcare Trust. Children with cCMV may have social, communication, emotional and a range of learning difficulties and therefore often struggle within both the home and school environment. National specifications for services for children living with HIV, another congenital infection which also affects neurodevelopment, is supported by clinical psychologists who assist with emotional and functional well-being working within the clinic and also alongside allied professionals such as teachers, health visitors, GPs, physiotherapists, occupational therapists, and speech and language therapists. The aim of the project is is apply this highly successful holistic model of care, in the same way as it is felt that this is also likely to be of significant benefit to children with cCMV.
The congenital infection clinic at St Mary’s Hospital has a cohort of more than 100 children with cCMV in regular follow-up. Funding has been obtained from the Imperial Charity, for a clinical psychologist to work alongside this clinic for a period of 14 months with the same model of care as the paediatric clinical psychologist for the Family HIV clinic. The role of the clinical psychologist will be to assess social, communication, emotional and learning difficulties, and implement interventions with the family. This work will be alongside allied health professionals depending on the needs of the child. The first appointment will be a comprehensive psychological assessment followed by collection of data from professionals. The second appointment will deliver the patient-centred intervention strategy, followed by monthly telephone review appointments over 6 months providing support and reinforcement. The final appointment will assess outcome and acceptability of the interventions and patient/family-experience with the clinical psychologist.
The social, communication, emotional and learning difficulties experienced by children with cCMV will be measured by both the clinical psychologist using a structured framework, and rated by the parent and child and allied professionals using a validated questionnaire. At the end of a 12-month period the interventions introduced will be evaluated using a similar framework, and the patient and family experience with the clinical psychologist will be assessed using parent and child questionnaires. It is these questionnaires that CMV Action has been able to fund with the support of our fundraisers.
The data collected by this project will also contribute to proposed future research . If the project demonstrates a positive health and social impact for these children, the model would be proposed for adoption as standard of care for children with cCMV.