I was truly inspired by the PIF event on Health Information for Children and Young People, that took place on Friday 3 November.
We brought together 44 participants from a wide range of organisations and locations, working in many different roles and illness areas. The broad group of backgrounds and overarching commitment, from each of our speakers and delegates, to ensuring children and young people are at the heart of health information development and delivery was apparent.
The day was chaired by Kath Evans (Experience of Care Lead, Maternity, Infants, Children & Young People, NHS England – and a member of PIF’s Advisory Group) who reminded us that a 2014 CQC survey found 41% of 12 – 15 year olds did not feel they were fully involved in decisions about their care, and how important effective information support is in helping children and young people to play a role in their health and care.
Amanda Allard (Assistant Director of Health, Council for Disabled Children) shared her passion for ensuring the voices of children and young people with complex needs are supported to be involved in decisions about their care, and highlighted how the complexity of the health system creates extra challenges for children and young people.
She shared the experiences of disabled children and young people on accessing health information, and resources from the Managing My Way project that aimed to increase the responsibility disabled children and young people are able to take for managing their own health conditions.
Presentations shared projects ranging from: virtual reality for supporting children experiencing anxiety before surgery; resources to support young people with a loved one diagnosed with MND; practical tools to help children understand cancer; activity books to help children manage their tinnitus; and a self-help tool to help children communicate with their dentist.
Researchers shared their work on understanding the concerns and information needs of young people to guide the development of self-management support for chronic kidney disease; and of using a health literacy framework to identify approaches that support children and young people to understand, and be involved in their treatment and care.
A video link shared the perspective of Simon Stones’ on living with, and managing long-term conditions, as a child and young adult.
Each speaker highlighted how valuable engaging children and young people was, not only leading to the development of better information resources, but giving organisations a wider understanding of their, and their families’, experiences to guide future work.
The two way nature of user involvement was also a key theme, with projects demonstrating how children and young people also benefited from having a voice and the opportunity to share their experiences.
The full agenda for the day, and link to the presentations, can be found here.
Top tips and challenges
A group-work session sought to build on the expertise and experience in the room, and asked participants to identify their top tips for ensuring children and young people are at the heart of health information projects, and also the challenges they had faced in their work.
Top tips identified by our participants included:
- Involve children and young people from the start of your project, and throughout the development process #co-design.
- Make it flexible for children and young people to get involved – consider virtual involvement and creative methods that build confidence and encourage contributions.
- Don’t expect children and young people to come to you, go to where they already spend time. For example, engage with schools and youth groups.
- Start conversations with children and young people about what is important to them and what they want, including what format they would prefer. Don’t assume digital is always most useful.
- Don’t try to be cool – be professional and ‘yourself’. Honesty, clarity and facts are important.
- Don’t patronise.
- Use the words and voices of children and young people, such as videos, quotes, photos and case studies, to create resources that speak directly. Listen to what children and young people say to ensure resources genuinely address their concerns and answer their questions.
- The importance of peer connection for children and young people.
- The role of ‘health information’ is not just about providing answers, but supporting children and young people to ask questions and take action.
- Wider collaboration leads to more innovative projects.
- The importance of evaluating to build the evidence base for the value of developing health information for, and with children and young people.
Key challenges faced by our delegates in their work included:
- Convincing colleagues of the need to develop specific information for children and young people, and to involve their voice and views in its development.
- How to convince schools, groups and children and young people to engage with your project – what is the value to them?
- Finding and engaging enough children and young people to test the effectiveness of information.
- Balancing feedback and requirements of children and young people with available resources.
- Pitching information appropriately to engage wide age groups when you only have limited funding.
- Challenges of measuring impact and demonstrating value.
Trending on Twitter!
Participants shared their views, experiences and challenges throughout the day, as part of our networking activities, and on social media – we were trending on Twitter before lunchtime! We’ve created a storify – #pifcyp – of all the twitter activity here.
Thank you to everyone who joined us on Friday, in person and via Twitter. We are looking forward to another jam packed year of exciting events in 2018!
Other useful resources
Image credits: Equality by dillydallying used under Creative Commons Attribution – Non-Commercial 4.0 license.
Posted on Wednesday, 08th November 2017