Creating the new 'Our Journey' resource

We are proud to launch our newest resource called ‘Our Journey: a resource to support families of children with acquired brain injury.  I wanted to write a little about how the project came about and the process of creating the resource.

The resource

‘Our journey’ is an A5 folder much like the ‘red book’ given to all new babies in the UK.  It is somewhere parents can keep their child’s key details as well as including tools to help them prepare for appointments and advocate for their child.  You can find out more about the resource here.
our_journey4

Where it all began

18 months ago a working group headed by Rosie Andrews ‘Director of Service Development & Commissioning’ at The Children’s Trust highlighted that parents said they often found they repeat information about their child’s injury and circumstances many times over and that a passport type resource could help reduce this.   I had just started working on the Brain Injury Hub information service having worked as a care assistant at The Children’s Trust for three years before this.  My experience working directly with the families made me realise the need for a passport-type resource and so I was keen to be involved in the project.  I could see that families often have a lot to take in when a child has sustained a brain injury and suddenly has endless appointments and therapy sessions. I felt the resource could also be more than just somewhere for families to record their child’s information but also a tool to help them prepare for appointments and advocate as fully as possible for their child.

Consulting with families and professionals

I wanted to make sure that the resource worked for both families and the professionals they were coming in to contact with so I made sure throughout the process I liaised with families and professionals from a variety of areas here at The Children’s Trust. I started by attending a focus group of parents who were really supportive of the project, one parent said:
The Passport Resource sounds like a great idea - especially for parents who are still shell-shocked, I think I was shell-shocked for over a year. It’s so hard to manage anything when your brain feels frozen with shock and grief."Parent
They also gave me some fantastic practical ideas for the passport such as the folder being easy to carry (so not too big) and a pocket to keep letters and MRI disks in.  They also wanted it to be easy to update and personalised so we have a page on the Brain Injury Hub www.braininjuryhub.co.uk/our-journey where families can download additional pages to add to the folder. I then approached clinicians from different therapies to find out what questions they would ask a parent at appointments; this then allowed me to put together the cue cards which help parents to plan for their child’s appointments. Clinicians also came up with some fantastic ideas from their own past experiences such as the pocket card for the child or young person to carry with them with strategies on and a way to record their daily routine highlighting both where the child or young person is struggling but also where they can fit in additional therapies.

Final changes

Once I had put together the content for the folder I made a prototype which I could then share with families and clinicians.  We received fantastic feedback from both parents and clinicians. Initially we put the Medical Information section at the front as we felt this would be what would need accessing quickest.  When we consulted with parents they said they felt the ‘All about me’ section should be first as this would encourage professionals to find out more about their child before they start treating them.

Challenges and strengths

One of the biggest challenges of this project was consulting with so many different people.  It took time to get input and feedback from so many different (and very busy) people and at times opinions would be different.  But I feel it was worth taking the time to get input from so many sources as I feel it will ensure the resource is as useful as possible for both the families it aims to support and also the professionals they are receiving services from.
I hope that this resource supports and empowers families throughout their journey following brain injury and look forward to getting feedback on the resource so we can continue to develop it in the future."Clair
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