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Improving the care and experience of children and young people accessing health services and those living with a long-term condition

Lucy Bray
Professor Lucy Bray – Professor of Children’s Health Literacy
Bernie carter
Professor Bernie Carter – Professor of Children’s Nursing

Going to hospital can be a stressful and unpleasant experience for anyone, but for acute and chronically ill children and their families, who may have multiple appointments, treatments and stays in hospital, it can feel a lot worse.

Research at Edge Hill University is having a powerful impact on the lives of children, young people and their families and carers by improving their experience in of living with a long-term condition and giving children a voice within healthcare interactions, enabling them to influence decisions about their care.

For more than a decade, Bernie Carter, Professor of Children’s Nursing, and Lucy Bray, Professor of Children’s Health Literacy, have been working with children, families and health professionals, both in the UK and overseas. Their work covers a wide range of issues affecting children, young people and their families, including the use of holding and restraint during children’s clinical procedures, children’s procedural health literacy (how they understand and cope with hospital treatment), the stigma faced by young people when disclosing a long-term condition and managing pain in children who can’t articulate their needs.

“Our research has always put children and families first. We acknowledge that you can’t gain a child’s perspective on visiting hospital or a parent’s view on managing their child’s long-term condition without involving them in our research. We recognise that children and parents are the experts, we use approaches to enable us to walk alongside them through their experiences.”

Professor Lucy Bray

Strength through stories

Children in hospital, one with a splint on their arm and the other with a tube coming out of their neck. They are smiling together on a hospital bed.

The thought of going to hospital can be scary for children. Being prepared can help alleviate anxiety and improve the experience for everyone. Professor Bray’s work on children’s health literacy led to the development of a multimedia resource, Children Coming to Hospital, that includes animations and a comic strip to explain what happens during a hospital procedure. The resource was co-developed with children during creative drama workshops to ensure it addresses their key concerns and helps them know what to expect, and what they can do, to improve their procedural experiences. The resource also incudes useful information to help parents support their child through a hospital visit.

Now freely available on several hospital websites, Children Coming to Hospital is also making a real difference to professionals’ awareness of how to make children’s procedural experience better.

Pause for thought

Young girl at the doctors getting a plaster put on her arm

Children who are scared and anxious can become uncooperative when it comes to having a clinical procedure. Holding children for procedures (often against their will) is still used frequently within clinical settings and can be seen by health professionals and parents as an inevitable, and often unquestioned, part of hospital life.

Professor Bray worked with children, parents and health professionals to develop a better understanding of attitudes towards holding and then looked at what health professionals reported what they would actually do when dealing with an uncooperative child. She found that despite being aware of good practice, when dealing with an upset and uncooperative child for a non-urgent procedure, many professionals reported they would struggle to step back from the situation and balance the child’s short and long-term wellbeing against the perceived need to ‘get the job done’.

Professor Bray’s findings recommended a ‘clinical pause’ before a procedure starts to gain a rapport, prepare a child and discuss and agree with the child and their parents what will happen during a procedure to promote good procedural care, and this is now included in the Royal College of Nursing’s national guidance on holding and restraint. This research has also informed the Restraint Reduction Network’s training standards for nurses not only working with children, but with any patients with learning disabilities, autism, mental health conditions and dementia.

I am more honest now, and have a clearer idea of what is acceptable and what is not.

Feedback from professional on Restraint Reduction Workshop

Overcoming stigma

Two young children sitting on the floor outside, talking to eachother. One is holding a handful of daisies.

For children, telling friends that they have a chronic condition like IBD can cause embarrassment. Professor Carter’s novel work with children with the condition found that disease symptoms were associated with mental health and wellbeing issues like loneliness, friendship quality and social ability. The results suggested that a child’s mental health should be part of the conversation between health and education professionals, children and young people and their families.

This research led to the development of a multimedia information resource, Telling My Friends, which is based on stories shared by children during the research and was co-created by young people from Edge Hill’s advisory panel. It helps children address the challenges and benefits of disclosing their diagnosis to friends and draws on real life experiences, advice and solutions. The resource is widely used by leading IBD support charity, Crohn’s and Colitis UK, and informed its national ♯ItTakesGuts campaign, designed to highlight the mental health impacts of the condition.

Reducing the burden of pain

Understanding and managing pain in children with profound cognitive impairments relies on good communication between healthcare professionals and parents. Research by Professor Bernie Carter in this area, carried out over more than 20 years, highlights the tensions that can exist between a professional’s assessment of pain and the deep-rooted ‘sense of knowing’ that parents develop from living with their child every day.

This research underpins Communicating Lily’s Pain, an innovative multimedia resource created in collaboration with parents. Working with creative professionals, they produced an audio-visual soundscape which was performed to parents, healthcare professional and the public to raise awareness, start conversations and influence practice.

“Oh, what a powerful video. It just hits the nail on the head that parents do know their children better than anyone else so our voices are extremely important, and we should feel valued in decision-making.”

Parent feedback on Communicating Lily’s Pain

Our research means that

  • Children, young people and their families have the opportunity to feel listened to, taken seriously and in control of what’s happening to them.
  • Healthcare professionals are more aware of what children really need in hospital and community settings.
  • Healthcare organisations see the value in adopting a more child-centred approach to clinical practice and are working more collaboratively with children and their families.

Find out more about Bernie Carter and Lucy Bray’s research by viewing their profiles on Pure:

Professor Bernie Carter’s research Professor Lucy Bray’s research