Co-developing Long Covid information materials for, and with, children and young people

What was your project about?

Our research project, SPLaT-19, investigated how children and young people are affected by Long Covid. While working on this project, we have found that lots of people don't know much about Long Covid or how it affects children and young people, and currently, there doesn’t seem to be a lot of information available to help young people who want to find out more. We set up SPLaTToon to work with children and young people to develop information materials to share information about Long Covid with young people.

Our research team has been working with children and young people on the SPLaTToon project to share research findings with the public. Children and young people with and without Long Covid were involved in this project to ensure that the final materials were accessible and provided useful information for both of these groups.

Who was involved in the project?

In total, nearly 70 children and young people with and without Long Covid, aged between 10 and 17, worked on the project. This included:

• 1 young person lay co-applicant who was involved in developing the project and facilitating the PPIE sessions.
• 2 young people with Long Covid who took part in the SPLaT-19 project and their parents,
• 47 primary school students
• 4 secondary school students
• Work experience students at Keele University School of Medicine 
• Members of the NIHR CRN WM Young Research Champion's Group (7 young people)
• 1 young actor involved with the filming and production of the videos

Two media producers, media students at Keele University, were also hired to work with the children and young people on the project to produce the health information materials. We also collaborated with the Keele and North Staffordshire Teacher Education, Shaw Education Trust who supported the project by setting up the links between the research team and schools.

How were children and young people involved?

Long Covid Information Booklet for Children and Young People

Children and young people were involved with the design and production of the health information materials and provided their ideas, views and feedback across two rounds of involvement and engagement events. One young person worked alongside the research team as a co-lay applicant and was involved with setting up and facilitating the initial design and feedback sessions.

Round one - Initial design sessions: 

Initial design sessions for Long Covid information materials were held with children and young people to get their input on how we share information about Long Covid with younger audiences. They talked about the content and format of information and how to make information interesting to children and young people.

We adapted the format of the sessions slightly according to the age of the children and young people, and the amount of time available in the session. Older children (secondary school aged) were given information about the project in a presentation and were asked questions in a focus group style session. Snacks were provided for in person sessions. Sessions for younger children (primary school aged) were designed to be much more interactive. A series of activities were developed around three key elements that we needed to consider for the project: content, format, and design; children rotated around these so that they could be involved in all three areas. Activities included interactive elements like ranking, sorting, highlighting, and allowed children to express their thoughts and ideas in discussion with the researchers. In this session, we also talked about accessibility and how we could ensure that the materials were easy for people to understand and engage with. The children talked about adaptations that they could make to increase accessibility for people with additional needs like dyslexia or visual or auditory impairments.

The schools who were involved had also asked us to include some careers work in the session, so we explained the key processes that health researchers and graphic designers go through when doing similar projects to increase children’s understanding of careers in these areas. 

Examples of interactive exercises used for children and young people involved in the project.

Round two - Feedback session activities: 

Media producers were asked to develop early drafts and designs for their materials, based on the thoughts and ideas from the initial design sessions. As part of this, the producers also wrote a series of questions that they wanted to receive feedback on, to help them develop the drafts further. These early drafts and questions were developed into a series of activities for the groups using interactive processes including sticky stars, post-it notes and short questionnaires to encourage children and young people to talk about the materials and comment on what they liked and what could be improved.

One young person was involved directly in the production of the materials themselves, working with the media producers to act in and contribute to the short social media videos. The materials finally went through accessibility checks and scored well, including AAA for the colour contrast (using  https://webaim.org/resources/contrastchecker/), the highest scoring for accessibility.

What did the project achieve and what are you most proud of?

Long Covid can affect all ages, and it is important to make sure that children and young people are aware of what it is and what it means for those who have it. We hoped to use SPLaTToon to share research findings with children and young people in an interesting and accessible way.

As part of this project we made several different versions of health information materials to share information about Long Covid with children and young people. The final materials were:

• a social media campaign aimed at young people, made up of six short information videos (shared on social media platforms like TikTok and YouTube), and some social media quizzes image posts; 
• and an illustrated leaflet for young people and their parents which can be shared in schools and other public places. 

We have shared these materials online, and in some schools and doctors’ surgeries. We hope that they will be useful for children, young people and their families who want to know more about Long Covid.  You can find them on our website: www.keele.ac.uk/splattoon 

 We asked children and young people who took part to complete a short evaluation form to describe how they felt about SPLaTToon. 45 people completed the form and responses were overwhelmingly positive:

• 89% said that they liked or really enjoyed taking part in the sessions, 11% responded neutrally saying that they were ‘okay’, and no-one responded negatively to the question.
• 87% of respondents wanted to see or really wanted to see the final materials for the project.
• 89% said that they would take part in similar activities again.

We’re really pleased that the young people enjoyed taking part and we hope to do more projects like this in the future.

Overall, we are most proud of all the children and students who were involved with this project. Approximately 70 children and young people took part in this study, and worked with us and the media producers to produce some really great health information materials for younger audiences. All of the young people who were involved were really engaged with the project and all of them contributed some really good ideas about how we could make research meaningful and interesting to young people. The final materials look amazing and it was all down to their hard work!

What advice about public involvement and/or engagement would you share with colleagues after undertaking this project?

PPIE activities can be really fun and creative for the participants and the researchers too! When we organised SPLaTToon and the activities for the PPIE sessions, we had to think differently to how we’d run a normal research project, but changing the way that we worked allowed the children to really shine and take their place as key members of the team. The kids came up with ideas that we hadn’t even dreamed of and were really keen to share their thoughts and give feedback. They really made the project their own and were a pleasure to work with.

We had anticipated some difficulty setting up the project and finding schools to take part, but were able to work with the lovely team at the Keele and North Staffordshire Teach Education, Shaw Education Trust who were able to set up links with local schools for us and supported us in connecting with the headteacher and setting up the project. We found that the schools were really keen to work with us on the project, particularly during the final half term of the year, and they did a lot of the internal organisation for us. They organised the space, time and students, so we only had to turn up with the materials and run the session, which was really helpful and minimised stress for us. We hadn’t done any work like this in schools before, but they were very friendly and happy to help at all points, which really helped us feel confident about what we were doing.

What do you plan to do next?

We’ve had lots of interest in the SPLaTToon outputs so we will continue to look at ways to share them with the public. We’re wrapping up the qualitative parts of the SPLaT-19 study so there won’t be any more to add to the SPLaTToon materials, but there are still quantitative parts of SPLaT-19 which are taking place so there might be some findings in the future that we can look at sharing in a similar way.

We have learned lots about PPIE and working with children and young people through the SPLaTToon project and have lots of ideas for how we can carry out similar projects for future research projects, both with young people and adults. Watch this space!

Acknowledgements:

The SPLaTToon research team is thankful to everyone who was involved with the SPLaTToon project, especially all of those who volunteered their time to contribute to the development of the project, session activities, and the health information materials.

To find out more and learn more about the resources developed for the PPIE sessions in schools, you can contact Alice via a.faux-nightingale@keele.ac.uk

The SPLaTToon project was funded by the NIHR SPCR PPIE Grant 2022.

This blog post was written by Alice Faux-Nightingale (Research Associate, Keele University), Glenys Somayajula (NIHR In Practice Fellow, Keele University and GP), Dr Claire Burton, (NIHR Clinical Lecturer in Primary Care, Keele University and GP), Helen Twohig (NIHR Clinical Lecturer in Primary Care, Keele University and GP), Lucy Bray (Professor of Child Health Literacy, Edge Hill University), Aaliyah Gardner (Media Producer, Student at Keele University) and Victoria Welsh (NIHR Senior Lecturer in Primary Care, Keele University and GP) as part of our Patient and Public Involvement and Engagement (PPIE) in Practice Series.