We do not yet know enough about the impact of CVI, for children. Just as the causes and associations of CVI are many, the impacts will depend on factors within each individual child, their family and their immediate and more distant surroundings.
This can be summarised using the Social-Ecological Model, which means that the impact of CVI will depend on its severity, the child’s abilities, temperament and any comorbidities and the extent to which it hinders him or her in their lives – which in turn depends on their surroundings and family dynamics and whether allowance is made for their impairment and/or strategies to help are available.
We know that in general, children with developmental problems and disabilities, who tend to have high rates of CVI, also have increased risks of additional mental health problems such as anxiety and depression and are 4 times less likely to enter higher education.
In research by our group, 13-year olds in a UK birth cohort with parent-reported behaviour suggesting CVI achieved less well than expected in their school reading tests at age 13 and were an average of 3-4 months behind their peers. They also had higher (worse) parent-reported scores for attention and anxiety-related disorders and were less likely to have a positive self-image.
This suggests that children with CVI are at risk of poor mental health and educational outcomes, but we need to know much more about this.
In the Impact Study, we will work with Dr Chris Morris and his team at PenCRU to carry out interviews with young people with CVI and their families, to find out more about the impact of CVI on their daily lives. We will also do a survey, known as a Delphi exercise, with all the relevant people (families and professionals working in the field) to find out their perspectives on the outcomes that matter for children with CVI.
We will use this work to develop a “core set” or a list of outcomes that can be used in research to make sure that studies measure the things that matter most to people with CVI, their families and the professionals who work with them. We will use this core set in our own feasibility study.