These resources were published in May 2025 as part of our project to support children and young people's voice in their epilepsy care and service - find out more about this project and explore more resources in the related content box.
This page explores two dimensions of the Lundy model of participation - Space and Voice. We share ideas for inclusive engagement with children, young people and their families.
Space
The Space quadrant of the Lundy model asks you to create opportunities for children, young people and their families to voice their opinions in a way that feels safe and comfortable for them.
Safe space: Creating a safe space to express views is crucial. Children, young people and families may not feel comfortable expressing themselves for many reasons. They may worry that:
- They are saying the wrong thing or are perceived as being stupid.
- They will seem ungrateful for the care they receive if they are critical.
- It might mean they are seen as difficult and receive less care as a result.
- They might be gossiped about, or confidentiality will be broken.
- People might bully or laugh at them, judge them or perceive them differently.
- They are the only person who is finding something difficult.
- They might be the only person who doesn’t understand something, or they should know the answer already.
- Their safety might be jeopardised if they tell the truth about what is happening to them.
Comfortable space: This straddles both the physical and safe space but more about how you create a welcoming, friendly space. How you communicate that their views are important and valued, as well as letting them know that group engagement activities are a fun space.
Thinking space: Most of us need time to digest information and think about what our opinions are on an issue. Rushed processes or lack of thinking time can mean that opportunities to share views are not accessible to some children or young people or that responses are not as thought through as they would like to be.
Physical space: Ensure your physical space is accessible and puts children and young people and their families at ease. Are they comfortable coming to you and sharing views whilst they are in clinic or would they feel more comfortable documenting and expressing their views through other methods at home and then sending over to you? Or maybe if it’s a group activity better suited to spaces outside of the clinic, in the community or at a youth centre.
Voice
The Voice quadrant of the Lundy model asks you to consider how you co-create the agenda for discussion with children and young people and support them to express themselves. This is especially relevant for children and young people with epilepsy as a high number may also be neurodiverse or have additional communication support needs.
Things to consider are:
- Make sure the agenda for discussion (whether that is during a clinical appointment or in a group workshop) contains space for the things that children and young people want to discuss, where they generate and lead the topics chosen.
- Consider what information everyone needs to make an informed opinion about the issues being discussed.
- Ensure information is in an accessible format for children and young people of different ages and stages.
- Think about different methods of engagement and communication that you use so that communication and activities are support different learning and communication styles, are fun and also effective.
- Find out how the children and young people you are working with communicate and be prepared. You may need to get visual prompts, objects to reference or interpreters in place.
- What is your role to facilitate children and young people to express their views? How do you ensure that you are facilitating and supporting but not leading?
Ideas to try
Ideas from children, young people and clinicians who have been involved in Engagement QI Programme (EnQIP) are listed below that may give different activities, methods or approaches in your engagement. There are other ideas that are tried and tested through the Epilepsy Quality Improvement Programme (EQIP) with videos from professionals explaining what they tried and why.
- Marble voting to choose priorities
- One-day engagement festivals
- Drama on epilepsy topics
- Arts and creative arts on epilepsy or service improvement topics
- Using through hobbies / sports friendlies / sports day activities, with questions and consultations through the day
- Floor painting / drawing (large brainstorms)
- Ideas activities with post-it notes for drawing/writing on
- Lego building for areas in clinic on things to like or change
- Speak to children and young people in clinic “clinic chats”
- Meet with your hospital youth forum
- Run a workshop at local school, youth centre, PRU, children’s centre
- Attend a local youth forum (council or third sector led)
- Run a photography / art / film competition
- Commission a visual art facilitator
- Work with young peer researchers / outreach team
- Use forum theatre approaches to explore issues
- Host an open day and do an engagement meet the doctor or board of the hospital
- Gather some young volunteers to plan an event to hear from other young people
- Box stack activities on topics and build a tower of priority
- Create an activity sheet to do in clinic waiting areas
- Menti voting
- Week of action – ask one question
- Gingerbread people to use the inside on topics that matter to you and the outside people that help you
- Takeover challenge to review consultation feedback
- Youth social action projects
- Host a roundtable / learning conversation
- Involve them in interviews or board level discussions
- Photo diaries
- Observation – involve families and friends
- There are lots of ideas created by children and young people in the Recipes for Engagement activities
- Ask for children and young people for their ideas!
You can also use the communication cards designed by children and young people as part of this project. A group of parents and carers from the North East Innovation Lab created a resource to help parents and carers get ready for their appointments - download below.