Co-production of the EPIC programme with children, parents, education and clinical professionals

The EPIC programme aims to improve thinking, learning and behaviour in neurodivergent children. EPIC focuses on understanding and supporting thinking difficulties, through psychoeducation and use of strategies. This understanding and support can help improve everyday life for neurodivergent children at home and school. The principles of EPIC such as a transdiagnostic individualised approach were developed from a considerable body of research evidence. Alongside that research evidence though, the voices of young people, their parents/carers and the health and education professionals who support them, have been critical to EPIC. Their voices have played a central role in how these principles work in practice and in designing and shaping the resources used in EPIC. This infographic summarises the process by which the EPIC programme was shaped and refined.

Children and young people are at the centre of EPIC. If we want to truly understand a condition it is vital to include the perspectives of these young people themselves. Members of our team were involved in a research priority exercise a few years back (a very systematic exercise called the James Lind Alliance priority setting partnership). The outcome of this exercise which was produced by young people with learning difficulties, their parent(s), and professionals who support them was a list of the Top Ten questions they wanted answered by research. The number 1 prioritised question was ‘what knowledge, skills and training do educational professionals need to identify the early signs of learning difficulties and provide optimal support for children and young people affected to help them achieve the best possible outcomes?’ This highlights the need for research to support teachers in understanding how best these young people can be supported at school. We followed this up with interviews with neurodivergent children to find out what children themselves understood about being neurodivergent and the strategies they found useful at school. At every stage we have involved children and young people informally and formally to identify the kinds of supports they would find useful. One of the key findings that came out of this was that neurodivergent young people feel they can engage best when tasks and activities are personalised to their interests. Some of the examples included using lego to do number work or using crafts to learn about thinking skills such as planning and breaking tasks down into steps. Children have also given us huge insights into strategies they find helpful. Many of these are quite practical – such as being able to use fidget toys, and taking movement or sensory breaks.

Teachers and other education professionals have also influenced the shaping of the EPIC programme across interviews and workshops. In a formalised set of interviews, teachers gave us their insights into strategies they find useful in the classroom. Very importantly, they identified that using a child’s strengths to overcome their difficulties can be a particularly good approach such as using a child’s creativity to complete a language task. In a series of workshops, teachers worked with us to design booklets that would focus on understanding and supporting children with ADHD and DCD. More recently, we have had teacher involvement in designing our new booklet focused more generically on neurodivergent children (so it will be suitable for children on waiting lists and those who don’t end up getting a diagnosis). This involvement has been essential to make sure that resources we develop are useful and appropriate to the context the child is in. Teachers have consistently commented on how neruodivergent children with the same diagnosis can differ greatly from one another in their individual strengths and difficulties. They have also emphasised that a strategy that is successful with a child one day may not work the next with the same child and similarly may not work for all children even if they have the same diagnosis. As a result we have developed the booklets in the style of ‘pick and choose’ the areas of strengths and difficulties a teacher or parent/carer wants to focus. The booklets also have a range of strategies to draw on and there is an emphasis on being flexible – from using a ‘chunking’ technique to support memory with one child to using an external item like a mini whiteboard to achieve the same goal with another child.

Parents and carers have also been critical to the development of the EPIC programme and the resources we use. Across 3 research studies we have conducted interviews with parents to identify the issues they need support with and the strategies that best work. At the moment we are developing a ‘self-delivery with support’ version of the EPIC programme that parents and teachers can do with their child / the child in their class with support from the team. Ultimately the idea is that this will be an empowering approach with parents leading the way on identifying their child’s strengths and difficulties and ways to use EPIC activities and resources to support the needs of their individual child.

Clinicians have also play a key role in the development of the EPIC programme. Many of our researcher led sessions in our studies were run by CAMHS psychiatrists with involvement of other health professionals. They also provided regular feedback on the development of resources and for example providing feedback on the need to design booklets that are generic so they can be given to children on waiting lists and be useful for those who end up not getting a diagnosis. Ultimately, if we want to truly understand neurodivergent children and effect change for them then all of those who support and care for them need to be involved in translating research evidence into effective practices.

Psychoeducation

The EPIC intervention and use of associated materials aims to facilitate optimal thinking, learning, and wellbeing in children and young people.

A central part of the EPIC approach is the use of psychoeducation.   What is psychoeducation and what does it involve?

Psychoeducation involves gaining knowledge to help with understanding of a condition. The aim of psychoeducation within the EPIC approach is to ensure that everyone caring for a child understands the strengths and difficulties of the individual child. Our booklets ‘Understanding ADHD’ and ‘Understanding DCD’ can be used at home and at school to help with understanding a child’s difficulties.  

Within the EPIC approach, psychoeducation is not about learning about a diagnosed condition such as DCD and assuming every child with DCD has the same set of difficulties. Children with the same diagnosis label differ from each other. These differences mean it is important that everyone caring for a child understands the strengths and difficulties of that individual child and not what they assume would be their difficulties from their label.

A really good example concerns Attention Deficit Hyperactivity Disorder (ADHD). Of course it will be assumed that a child with this label has an ‘attention’ difficulty – it is in the name after all. But actually our research shows that if you ask children with ADHD to complete a range of tasks tapping areas like attention, memory, planning and similar skills, the fewest amount of children have a difficulty in ‘attention’. A lack of concentration can reflect a whole wide range of thinking or other difficulties. It could reflect a memory difficulty – we know that for many children with ADHD information disappears more quickly from their short-term memory than it does for other children. Many of these children have sensory processing difficulties and are hyper sensitive to noises or other sensory information around them. Classes are noisy busy places. It is likely that many children with developmental difficulties are distracted by aspects of their environment they are sensitive to, rather than by an internal ‘attention’ difficulty.  For other children there will be a thinking related attention difficulty. Each child is different. The EPIC approach takes a ‘strengths and difficulties’ perspective where each child is understood as an individual.       

How can the EPIC materials help with identifying what is the underlying difficulty affecting a child? The ‘Understanding’ booklets detail areas of strengths and difficulties to think about and focus on. In our strategy booklet (designed for teachers but it is also suitable for parents) we describe everyday games that can be used to think about what underlies a child’s difficulties. Every day games like connect 4 and snakes and ladders can be useful with this. With connect 4 you can play and see whether a child plans out their moves and whether they have difficulty in taking turns. Being able to think flexibly can also be observed when playing connect 4 by switching the players colour disks between games. Snakes and ladders is also useful for this – play normally and then switch to going down the ladders and up the snakes.

In our booklets we emphasise the importance of talking to a child about their thinking processes. Many children with developmental difficulties don’t have the neurotypical child’s automatic tendency to plan and to use strategies to aid memory.  Psychoeducation can help a child to recognise they need to put strategies in place to help them complete tasks and activities. Parents and teachers can also put strategies in place to aid thinking difficulties and ensure a child can approach and complete a task as best as they can.            

We are currently designing a more general booklet that will be useful for children without a diagnosis. Many children do not have a diagnosis as they are on a waiting list. Others are without a diagnosis as they may not have quite met criteria during assessment. Other children have similar thinking and wellbeing difficulties to those with a diagnosed developmental condition but their difficulties have arisen from a different reason such as having been born premature.  Our approach of taking each child as an individual means that these games and activities are likely useful for children without a diagnostic label.

Of course all children have strengths and difficulties so these booklets can also be used more generally with children. We very much encourage that a whole class approach is taken when learning about thinking processes in school. This can help foster children’s awareness and insight into the limitations inherent in aspects of our thinking like our memory and successful planning and organisation.        

Tomorrow we will blog about pairing knowledge of a child’s difficulties with suitable strategies for facilitating optimal thinking, learning and wellbeing.

Visual Production Credit: Photo by Sturti via Getty Images