Children and young people around the world are at risk of having poor experiences of procedures such as X-rays and blood tests if their rights and best interests are not prioritised, according to an international team of experts led by Edge Hill University.

The standards call for a re-think of the use of restraining hold to complete a procedure if it is not an emergency. Such holds, against a child’s will, have been criticised by health professionals and highlight in evidence for the harmful and long-term impact they can have on an individual’s psychological wellbeing. 

In a bid to address the issue, child health experts from around the globe have joined together to propose new standards of care to support all children aged 0 to 18 who are undergoing a clinical procedure. 

The group, iSUPPORT, led by Edge Hill University, has launched a consultation on the rights-based standards designed to ensure the short and long-term physical, emotional and psychological wellbeing needs of a child are of central importance in any practice and decision making. 

“I experienced many badly handled procedures as a child and now as an adult the trauma still affects many of my life choices,” said Katie, 20, who underwent multiple procedures throughout her childhood. 

“I want to prevent other children from experiencing what I did and having difficulties with future procedures. The psychological wellbeing of a child before, during and after a procedure needs to be protected. The standards will hopefully help do that and will avoid the unnecessary restraining of children for procedures.” 

The new standards are based on internationally agreed children’s rights set out by the UN Convention on the Rights of the Child  (UNCRC, 1989). 

They aim to support children and young people during clinical procedures to reduce harm and establish trust with health professionals. 

Jack, aged 13, lives in the UK and has experience of a procedure within an emergency department. 

He said: “I didn’t really know what was happening, it all felt so quick and rushed. It felt like the doctors and nurses were not really talking to me but around me and I was so scared and anxious. They were explaining things to me, but I was too anxious to really listen, I couldn’t focus on their voices as I didn’t want to hear what they were saying. 

“Then I remember being held, I cannot really remember by who, but I did not like it and then it was done. It just felt so scary.” 

The formal consultation period for the new standards is open until July 2022. 

Lucy Bray, Professor of Child Health Literacy at Edge Hill, is leading the project.  

She said: “The standards have been developed through ongoing and extensive consultation within the international collaborative group and with established youth and parent forums. We have also gained wider feedback and input through a previous online survey. We know that many children receive high standards of child-centred care when they have a procedure, but we also know that we can do better and by working collaboratively with our colleagues around the world, we want to effect real change.” 

Edge Hill University’s research team also includes Professor Bernie Carter, James Ridley and Dr Joann Kiernan. Other core UK contributors include the University of Liverpool, Alder Hey Children’s Hospital, the  Restraint Reduction Network, and young people’s advisory group Generation R. 

The iSUPPORT group is made up of over 50 members from around the world including the UK, Ireland, Jordan, Indonesia, Cambodia, South Africa, Sweden, Australia, New Zealand, Brazil, Canada, USA, Spain, Netherlands, Malawi and Korea. 

You can find out more about the iSUPPORT project and share your thoughts in the consultation here: https://edgehill.ac.uk/health/research/rights-based-standards-for-children-undergoing-clinical-procedures.