Why children and young people’s voices matter in health and care

The government has set a bold ambition to create the ‘healthiest and happiest’ generation of children ever. However, the health of children and young people (CYP) has declined in recent years. Good health is a key aspiration for CYP, but a top-down approach is unlikely to work.

We know that children and young people want to be involved in decisions about their care but do not always feel that they are listened to by health care professionals. This is particularly significant given that children’s concerns about not being listened to and believed by health care staff can be a barrier to them seeking help. Early intervention and prevention during childhood plays a crucial role in shaping future health outcomes and a lack of trust in health care providers may have negative implications for children and young people’s health over the long term.

Why should we listen to children and young people?

Children and young people have different health care needs from adults. When children and young people are unwell they often require specialist advice and support, and they can both deteriorate and improve very quickly. Many long-term conditions develop during childhood, and a system that has been primarily designed to meet the needs of adults is unlikely to work effectively for children and young people. Health inequalities also differ, and tackling these requires decision-makers to listen to the views and experiences of children and young people to ensure that services are accessible and inclusive.

Can listening make a difference?

Reflecting on my experience supporting the recruitment for a youth board, it was clear to me that children and young people want to be heard and that when the health and care system listens, it can make a big difference. Listening to children and young people can help to ensure that information is accessible, and that health care environments and services are tailored to meet their needs. Examples of where children and young people have been involved in shaping health care include:

Creating accessible health information for young people

At Barts Health NHS Trust, the Youth Empowerment Squad (a youth forum made up of young people who have experience of being in hospital) identified a need to create Covid-19 resources for young people. Members designed an information leaflet using colours, language and diversity to make it accessible, enabling other young people to stay informed and reduce anxiety.

Shaping the health care environment

At Evelina London, CYP and their families helped to shape the children’s day surgery unit through a series of activities. Workshops highlighted the need to create a space that balanced the needs of those needing distraction or calm, age-appropriate design with clear wayfinding to create a non-clinical and welcoming environment. An art competition was also held for children and young people to submit ideas, which form the basis of the artwork in the centre today.

Creating services that reflect the lived experiences of children and young people

At Northamptonshire Healthcare Foundation Trust, the Youth Advisory Board co-produced the iDiscover service, a community that supports children and young people to learn and grow. Involving children and young people has meant that resources and activities reflect the experience of children and young people growing up in Northamptonshire. In the words of one young person involved: ‘I feel that if you’re not getting the opinion of people who are using the services, you can’t truly understand what they need.’

What can help us listen to children and young people?

A recurring theme in discussions with colleagues who engage with children and young people is the importance of meeting them where they are. Ensuring that communication is age appropriate and engaging is crucial. Thinking more creatively about how to engage with children and young people, for example through art and games, can support them to express themselves.

Ensuring that a diverse range of voices are included also means that opportunities to get involved need to be organised at convenient times outside of school hours to support participation and engage seldom-heard groups.

Tokenistic listening can cause harm and reduce trust in health care. Closing the feedback loop by ensuring that children and young people know what happened with the views they shared, what the next steps are, and what the outcome was is an essential but often forgotten part of engagement. Reward and recognition are also important, although this doesn’t have to be monetary. Supporting children and young people to develop skills through taking on leadership roles, contributing their opinions and lived experiences to shape policy and strategy in health care settings, and learning about careers in health care, are examples of ways that children and young people can be recognised for their involvement. Building a culture that involves CYP in shaping health care requires leadership support and for the health system to value their experiences and truly listen to understand.

Listening alone will not solve the health challenges that children and young people are facing. But children and young people have the right to be heard. Involving them in shaping health care can build trust to support the delivery of care that is person-centred and inclusive, helping to create a healthier and happier generation.