infoKID - information for parents and carers about children's kidney conditions

infoKID logo

This online resource for families covers a range of kidney conditions, symptoms, causes, diagnosis, treatment and management. Parents and carers can access content as and when they need it - to read on-screen or download as leaflets - visit www.infoKID.org.uk

About

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.

Download the focus groups summary report (PDF, 105 KB)

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 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.

Project board

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.

Contact

Email: infoKID@rcpch.ac.uk

Phone: 020 7092 6081

RCPCH logo     British Association for Paediatric Nephrology logo     British Kidney Patient Association logo