infoKID is a partnership project of the RCPCH, British Association for Paediatric Nephrology (BAPN) and the British Kidney Patient Association (BKPA). It is funded by the BKPA.
In February 2017 we published an evaluation, which looks at how parents, carers, patients and health professionals use infoKID.
How we involve parents and carers
Accessible, high quality information for families can follow on from conversations with a child's healthcare team, support them to make the best decisions for their child and provide more detail as and when it is needed.
We explored the views of parents, carers and young people about the kind of information they need through focus groups at two children's hospitals. The rich feedback provided was used to develop infoKID.
How we produce the information
To ensure we produce high quality, accurate information that meets the needs of families, each information topic is produced over several stages. This includes a review by the project board, healthcare professionals and parents, carers and young people, as well as professional editing and proofreading.
Our professional stakeholders include:
- leads from each of the 13 UK paediatric nephrology centres
- organisations working in children's kidney care
- paediatric specialty groups.
Stakeholders read and comment on draft topics in collaboration with their colleagues from the multidisciplinary healthcare teams.
The project board has representation from the three partner organisations. Dr Jan Dudley, Consultant Paediatric Nephrologist, is Chair. We are:
- three paediatric nephrologists
- general paediatrician with special interest in nephrology
- nurse consultant in paediatric nephrology
- representative from BKPA
- RCPCH staff.
Phone: 020 7092 6081