Disabled children, young people and their families receive support from a range of services, sometimes these can be intensive and have a big impact on their life but how the success of these interventions is determined is not always clear.
The Children’s Outcomes Measurement Study (CHUMS) was a 3-year study aimed at finding out what health outcomes matter most to neurodisabled children and young people and their families. It also looked to see if these were the same outcome that health professionals were working towards, and if they could be measured by existing Patient Reported Outcome Measures (PROMS).
This was a multi strand research project lead by academic researchers from the Peninsula Cerebra Research Unit for Childhood Disability Research at the University of Exeter supported by researchers from Oxford University and York University. The health team at CDC were responsible for leading the qualitative research strand of the project with neurodisabed children, young people and their parents, to find out what outcomes were most important to them, and how the existing PROMS were capturing this.
Gathering the views of children and young people
We recruited over 100 child, young people and parents through CDC networks to take part in research sessions in groups and individual interviews that enabled them to talk about what was important in their life and the outcomes they wanted the health service to help them achieve.
To make sure the research included the views of a diverse group of neurodisabled children and young people we included research with young people with complex communication impairments using innovate approaches, including the development of a Talking Mats research framework and an Eye Gaze software.
What we found
The research provided us with a unique insight into how children, young people and their parents think about the outcomes they want the NHS to support them to achieve.
We used the World Health Organisation’s International Classification of Functionality to find out what was most important to children, young people and their parents and these were compared to health professional priorities. We found that children, young people and parents valued overall life outcomes, things like emotional wellbeing, and friends and family. Outcomes that were only about specific aspects of their health were seen as important because of the way they had an impact on their ability to achieve these overall life outcomes.