Children and young people are too often overlooked in the design of health and care services. In this blog, Sophie Lowry (Implementation and Involvement Manager), Shilpi Shobowale (Project Manager and NHS Navigator), and You Tae Jeon (Programme Support Officer) reflect on the HIN’s work with schools, families, and the NHS South West London. They delve into practical tactics and real‑world lessons that helped engage young people meaningfully and influence the future of digital health support in the region.
Involving people and communities in improving health and care is central to addressing the widespread health inequalities which impact our society, improving health outcomes more generally, and delivering services in a sustainable and cost-effective way to meet the needs of our populations. At the Health Innovation Network (HIN) South London we recognise the critical role of involvement in how we work – with our Involvement Strategy bringing together our key principles for how involvement plays a part in all our projects.
Involving minoritised people (whose voices tend to be more rarely heard in health and care transformation projects) is particularly important in shaping better and more equitable services. These groups are sometimes described as “hard to reach”; we prefer “seldom heard” or “underserved” as these terms better reflect the systemic barriers which make engagement more difficult, rather than implying a lack of willingness to engage. Children are classically categorised as fitting into that “hard to reach” category.
Involving children in health and care projects is inherently more complex than doing the same with adults, with important additional processes such as appropriate safeguarding to consider, as well as the need to tailor approaches and activities to be appropriate for young people’s developmental stage and understanding of healthcare. A further complexity is deciding how to involve parents and guardians in projects – acknowledging the role they play in shaping the world of health for children and also the potential tension that may exist in parents’ priorities compared to those of their children.
However, the reality is that many aspects of the health and care system most relevant to children and young people are either undergoing radical transformations, or slated for transformation in the near future. Taking mental health as example, the need for change is clear. Waiting lists for Child and Adolescent Mental Health Services (CAMHS) have exploded since the pandemic, with more than 150,000 children having waited more than two years for treatment, and poor mental health now keeping more young people out of work than ever before. Looking elsewhere, improving the health of young people is a key feature of the 10 Year Health Plan – which sets out ambitious improvements in areas such as oral health, immunisation and obesity. The voices and experiences of young people are critical in shaping the future of the services they use. So – how can we ensure they are heard?”
Lessons from south west London
Over the past year, we’ve worked with NHS South West London (NHS SWL) to help develop digital tools which will make it easier for young people across the region to manage their own health. With NHS SWL’s support, we’ve worked with children, young people, parents and guardians, and carers to make sure the work reflects their reality – challenging assumptions and building an understanding of why young people make decisions about their health, rather than just observing the results of their decisions.
This work has already shaped campaigns which have successfully engaged young people, and will be used to improve key digital touchpoints such as websites for children and young people.
Informed by existing best practice for working with children and young people, we decided on a number of principles to guide our approach to involvement:
- We focused primarily on listening rather than testing or validating solutions; we tried to take an open mindset to reduce the risks of us defaulting to the assumption that ideas which would work for adults would also work for children.
- We designed for flexibility, assuming that methods or approaches would evolve once engagement began.
- We prioritised accessibility and inclusivity; we co-designed surveys, used translation-friendly language and used multiple formats to mitigate the risks of digital exclusion.
- Where possible, we also met children where they were, using familiar formats, channels or locations for engagement rather than bringing children into our professional, “adult” world.
Practical tactics for involving children and young people in healthcare projects
As is hopefully clear from our principles, we went into the project fairly confident we would not find a single “silver bullet” for involving children and young people in our work. This proved to be one assumption that was validated!
Over the course of the project, we used many different methods for engaging with young people – some of which worked well, and some of which didn’t yield the results we had hoped for:
- School-based facilitated workshops played an important role in helping us to understand what young people felt about particular topics. We used visually-led techniques (such as dot voting or asking children to draw themselves and the people they speak to when they have worries about their health) with younger children, with a blend of these tactics and more discussion-based approaches used with secondary-school children. The emphasis was on having fun and interactive activities; we found that children tended to get tired more quickly than adults so keeping the energy high was important. We also gave out certificates to younger participants, which were really well received!
- Online one-to-one interviews with children, parents and carers allowed for more in-depth discussion around particular topics at times convenient to the people involved. One teenager even did an interview during her school lunch break! As with any interview-based approach, incentives (vouchers or bank transfers) were important for recruitment.
- We used online surveys to try and improve the breadth of engagement – but we found that these had a poor response rate from young people. We reflected that reaching children and young people through digital channels is difficult for organisations like our own, which don’t have established presences on the platforms most used by young people (such as Snapchat or TikTok).
It is also worth flagging the importance of partnering with a trusted intermediary – a team or organisation working with children and young people on a regular basis. Without this intermediary, access to children becomes exponentially more difficult and expensive, and building psychological safety with children is also more likely to be challenging.
In our case we worked closely with a number of schools, who we offered vouchers to in return for their support. Making sure our approach to safeguarding was clearly communicated was a priority for building trust with these teams. We also shared all our plans in advance with school teams to build their confidence that we were approaching our work with children in an age-appropriate way.
Reflections on the project
It’s easy to focus on the challenges of involving children in healthcare projects – but there are many upsides which far outweigh these. We found that the young people who contributed to our work were often more honest and enthusiastic about the project than what we’d expect from adults. Many of the young people we engaged with were incredibly articulate, shining light on insights we simply wouldn’t have been aware of without speaking to them directly.
Working with young people does create “invisible” work – including arranging DBS checks, building relationships with schools and coming up with age-appropriate workshop plans and resources. However, the payoff for these is well worth the effort. Beyond the strategic benefits and satisfaction of knowing that children and young people’s voices are genuinely being heard, it’s fun, creative and interesting work!
We’re already planning (and looking forward to) our next project working with young people – and we’d love to share insights with other professionals working in this area as well.
Find out more
Get in touch to find out more about how the Health Innovation Network (HIN) South London can help you to work with children and young people.