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by Louca-Mai Brady
7th January 2021

There is increasing interest in young people’s participation in the design and delivery of health services. But young people’s views are not consistently sought or acknowledged and they are still often marginalised in healthcare encounters. Embedding Young People’s Participation in Health Services: New Approaches explores participation in healthcare from the perspectives of young people, healthcare professionals and researchers.

This article considers the potential implications of the COVID-19 pandemic for youth voices. In a pandemic which has mainly affected adults, paediatric services and young people’s participation have often had to take a back seat while health services have been dealing with an unprecedented crisis. There is a risk that, far from being embedded, participation could fall back into being merely a ‘nice thing to do if you have time’.

Author of the book’s foreword and Children’s Nurse and Children’s Champion, Kath Evans says:

“I believe in the magic of participation. It’s magical because of the impact it has on children and young people themselves, when adults involve them, trust them and believe in them, whether that relates to their care as individuals or the way they can collectively influence the design and delivery of services. Through this blossoming of their sense of wellbeing, self-worth and resilience, I’ve seen them grow into giants.

I’ve also seen healthcare professionals having moments of clarity when they hear directly from young people. By sharing their perspectives and experiences, young people can offer rich moments of deep insight, and the energy in their ideas and fresh perspectives is positively infectious.

The Office for National Statistics published analysis from the insights of 10–15 year olds on what they think makes a happy life. The four things that mattered most to them were relationships and access to people they can trust; having a voice that’s sought out and valued; the role of schools in their wellbeing; and the importance of feeling safe. All these connect with participation work.

In order to really bring to life the UNCRC, the NHS Constitution and the Health and Social Care Act, we must keep focused on walking in the shoes of children and young people so that we understand what matters most. Participation is the magic that allows this to happen.”

During the period in which this book was being edited, the NHS, and indeed the whole world, was upended by the COVID-19 pandemic. The potential implications of this crisis for young people’s participation in UK health services were discussed in the publication day tweetchat and launch webinar.

These were some of the key issues that emerged:

  • Supporting young people’s participation online has been ‘a blessing and a curse’, presenting challenges but also opportunities to innovate and ‘work differently, smarter and reach further’.
  • The participation which has continued during COVID-19 has mainly been online, which has made it easier and more accessible for some young people (e.g. not needing to travel), as well as enabling adults who work with young people to become more digitally connected. It is also much easier to move an existing group online than to start a new one as it’s harder to build and maintain new relationships online.
  • On the other hand, focusing on online participation as the alternative to face-to-face interaction has implications for who is able to be involved: digital poverty and the accessibility of many online platforms can also exclude some young people. Innovation needs to be inclusive, and include an exploration of whether and when other methods of remote involvement (e.g. phone, email, post and online involvement in ways other than videocalls) might work better.

“In my current work, we have found many people with learning disabilities are excluded by technology and cannot access the support to enable them to transition online. We have to be careful we do not inadvertently forget those young people who are digitally excluded.” Jack Welch, a young contributor to the book chapter by the Association for Young People’s Health

  • COVID-19 has affected young people’s access to healthcare. As one person said in the tweetchat: ‘Unfortunately COVID has kept young people out of the hospital! Makes it more difficult to get them involved if you don’t see them!’
  • COVID-19 may have ‘disempowered young people lucky enough to not already be disempowered’ and some reported frustrations that participation work has been delayed or sidelined during the pandemic.

As Kath says above, it is important to keep focused on walking in the shoes of children and young people so that we understand what matters to them most, make sure this is reflected in the design and delivery of health services, and involve them in shaping how that happens.

The challenges of COVID-19 have highlighted the potential of doing things differently and developing more participatory and inclusive practice in collaboration with young people.

Necessity is the mother of innovation in participation as in so many things at the moment, and COVID-19 has shown us that processes and systems can change overnight. It is critical that young people are involved in shaping how participation in health services develops now and in the future. Let’s never forget that participation is vital in our therapeutic tool kit to create positive experiences for young people and professionals alike. The challenge now is to make sure we draw on young people’s experiences during the pandemic, using resources such as:

  • The Growing up under COVID project, led by a contributor to the book, which aims to understand young people’s experiences of the pandemic through action research.
  • Work by RCPCH &Us, also contributors to the book, working with young people to reflect on their experiences of COVID-19 and the lockdown.
  • Research by Edge Hill and Keele Universities looking at where children (aged 7–12 years) get their information about COVID-19.
  • #PlanetDivoc91, a COVID-19-inspired monthly webcomic series created with young people, researchers and artists

Join the #YPHealthParticipation tweetchat on Weds 13 January, 8pm GMT.

With thanks to Jack Welch and all the book contributors and others who took part in the #YPHealthParticipation tweetchat and launch webinar discussions.

Louca-Mai Brady is a Senior Research Fellow at the Institute of Ophthalmology, University College London and freelance research and involvement consultant.

 

Embedding Young People’s Participation in Health Services edited by Louca-Mai Brady is available on the Policy Press website. Order here for £19.99.

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