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The IMPACT Study

Interventions to improve Mental health supPort in families with children And young people with Chronic rheumaTological conditions

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child using technology



Paediatric Rheumatology is a term that covers over 80 conditions, affecting different parts of the body. Including, Juvenile Arthritis (where the body attacks the joints between the bones, causing pain, swelling and bone destruction, affecting 12,000 children in the UK), and rarer conditions like Vasculitis, (where the body attacks its own organs).


There are currently no cures for any of these conditions and often children and young people need someone to talk to. Psychologists (people trained to help us with how we think and feel), can help children or young people manage the daily difficulties of living with one of these conditions, including: helping to understand it; manage injections; side effects; blood tests; frequent hospital visits; schooling and worries about the future. However, there are not enough psychologists in the UK, with nearly half of the paediatric rheumatology departments not having access to a named psychologist as part of their rheumatology service. Research has shown that children and young people with rheumatological conditions can have high levels of mental health problems and therefore are at risk of poor health outcomes. We urgently need to look at other ways of providing early, essential support to children or young people to improve their current wellbeing and prevent long-term mental health problems. One such way of doing this, would be to strengthen the networks around the child or young person and the people whom they look to everyday for reassurance, their parents and carers.


The purpose of this study is to create a digital service that can guide parents through ways of supporting their child or young person at home. This service will be a ‘chatbot’ (like a robot) that parents can have on their phone or on a website and will give information approved by health care professionals about the conditions and suggest ideas to help their child or young person. Our service will also offer a different way of supporting parents, through coaching them by role-playing and practicing difficult conversations, such as when important medicine must be taken but has unpleasant side-effects, when exercises must be done every day or how to prepare for injections into the joints of the body.

children playing happily


This is a co-designed study, which means that children and young people with rheumatological conditions, parents/carers, health-professionals and rheumatology charities are involved in every step of it, equal partners in making all decisions. We have a strong, committed steering group and a larger expert working group, both made up of children, young people, parents and health care professionals to help keep the study on track. This study has a couple of parts to it.


Asking important questions

We will gather information from parents/carers and health-professionals on their views about what they think the chatbot should help with. Most importantly, we will also ask seek the views of children and young people, especially what things they wish their parents had known or could have helped them more with. We will do this by inviting children, young people, parents/carers and health care professionals to join us in small groups across the UK, to share their ideas and experiences.


Being creative

We will then work with our hospital technology department, technology company and our expert patient and parent group to co-design the chatbot. This part of the study is vital to ensure that the views of those with rheumatological conditions are at the heart of this study. We aim to have two workshops where we will spend time thinking and talking about 1) the content (so what we can put into the chatbot) and 2) the design (how it will look).


Testing the chatbot

We will then ask some parents to test the chatbot for us for a few weeks to see how useful they find it. During this time, we will ask them to complete some simple questions asking them about ‘usability’ of the chatbot. Next, we will change what they think could be better, and ask a new group of parents to test it, and then repeat again and again – until we have a good end result. We will invite this last group of parents to have an interview to tell us about their experiences of the chatbot.


We will work with our expert steering and working group, charities and health-professionals to share our findings and present this work at family events, meetings, conferences and in journals. We will learn from any changes that need to be made, to improve the parent chatbot and ultimately make a similar chatbot for children and young people with rheumatic conditions. We believe this will be the first support service for parents of children and young people with all rheumatological conditions, however, our learnings will also apply to other diseases and be useful to the wider NHS.

This work is being conducted from Great Ormond Street Hospital in London and has full HRA ethical approval IRAS 329476, REC ref 23/YH/0172. The study is funded by the National Institute of Health and Social Care Research, Advanced Clinical Academic Fellowship (ACAF) 302864 from 1st April 2023 – 31st July 2026.



If you are interested in any of this work and especially if you would like to take part in any of the study parts, please contact Dr Polly Livermore by completing the form.

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