This post was written by Dr Iona Beange and Dr Sinead Rhodes
Behind the scenes, our team have been busy developing a new version of our EPIC programme. It’s called a ‘self-delivery with support’ programme and we are very excited about it.
After showing that EPIC works in a research context (see this blog post) it was time to get it ready for the real world! We listened to parents and teachers, crunched the numbers and then developed our new model with a small-scale feasibility study. Here’s what the parents who took part had to say:
“It’s been really effective”
“Amazing to be honest. Other people should start with this. So easy to put into everyday life.”
Timing is important
We know time spent waiting for neurodevelopmental assessment can be particularly challenging. So for this study, we offered the new EPIC programme to parents at the point their child joined the waiting list.
“It’s quite scary as a mum when you get told these things. You join the waiting list and there is just nothing. You are expected to wait. It was so helpful to know somebody was trying to help”.
“I felt supported during a tough time”
“The different aspects of ADHD are a new thing for me – we only just got told that it might be a possibility. With EPIC, straight away I was getting help and support. It’s been great.”
Empower and upskill adults
A key goal of the EPIC programme is to empower the adults who care for neurodivergent children. And to help them understand their child better. The self-delivery model seems to have achieved this:
“I understand him more. I understand why it takes him so long to put his shoes on or eat his breakfast. I’m more patient – I used to get frustrated with him”.
EPIC also aims to upskill parents and carers with strategies to help support their child. Parents in our self-delivery with support programme felt these benefits:
“I used to tell him everything. Now I’m transferring the words I used to use, to him.”
“I will be carrying on with these strategies. I’m going to use this for a very long time.”
Do parents have time?
But a key concern at the start of this feasibility study was time. Would parents be able to fit EPIC into their busy schedules?
Well, they didn’t do it quite like our research team – who completed 16 sessions with each child. The parents did it differently. They integrated the tools into their daily lives – and reinforced them many times a day!
“It was way easier compared to what I thought it would be like. It was just something we could put into everyday life”.
And for some children, the self-delivery model more appropriate:
“We coped very well. My child copes better when it is just me and him, rather than an outsider”.
The participants also made clear the value added by the support element of the programme. The phone calls and home visits from the EPIC team were an essential part of the effectiveness. During a home visit a parent commented:
“I can see what you are doing there. Speaking out loud what you are doing and repeating ‘stop and think’ lots of times. I wasn’t quite doing it like that. Now I see now what you want me to do”.
Parents have continually told us that, although they like our materials, they don’t just want sign-posted to resources. They want and need that additional person-based support, to help them apply the tools.
We would like to thank all the children and parents who helped us develop these materials. Your feedback has already resulted in improvements to our materials. We hope the EPIC tools continue to serve you, well into the future.
Watch out for our next blog post, in which we will look at a teacher’s perspective from a school that took part in our feasibility study. They decided that a whole class approach would suit them better. We thought that was a really exciting development – and one we are continuing to develop.