New guide for parents of children with hemiplegic cerebral palsy

A clinical specialist occupational therapist in the Evelina London REACH service has collaborated with parents, carers and therapists of children with hemiplegia to help other families better understand the condition and the evidence-based ways they can support their child’s function.

Around 80% of hemiplegia cases are a form of cerebral palsy, present from birth, while around 20% are acquired later. The condition affects around 1 in 1,000 children in the UK. It causes weakness or paralysis on one side of the body, affecting movement, coordination and daily tasks like dressing, eating or playing.

Evidence-based therapy can help, and children from south London, Kent, Surrey and Sussex with, or at risk of, hemiplegia, can be referred to the Evelina London REACH service for support.

The occupational therapist-led service has been running for 10 years. It supports 80 to 100 children each year with upper limb rehabilitation programmes which are delivered in partnership with families, community therapists, and Evelina London REACH therapists.

Parents and carers can play an important role in their child’s rehabilitation. They’re in a position to create opportunities for repetition, intensity and practice at home. But, it’s important that they are equipped and confident to do so.

Through her National Institute for Health Research funded research, Jill Massey, an Evelina London occupational therapist and King's College London researcher, set out to co-design a programme with parents and therapists to support parents and carers to deliver evidence-based therapy interventions.  

Her research had several stages. She first explored the barriers and opportunities to parent-delivered rehabilitation. She then spoke to families and therapists who were partnering to deliver upper limb rehabilitation programmes to understand their experiences.

The research has changed how parents and therapists work together to deliver therapies through the Evelina London REACH service. It also revealed a gap: many parents and carers are not given clear information when their child is diagnosed. Families told her they wanted to know what they could do to support their child before they received therapy.

Jill coordinated work with families and therapists, so they could co-design a guide to address this.

It sets out practical steps to equip parents and carers with the knowledge and resources they need to help their child thrive. It also includes a list of other organisations that can offer further support.

Jill said “This research has helped shape how families and health professionals work together to deliver therapy for children with hemiplegia. Parents told me they wanted more information earlier – right from the point of diagnosis – so they could support their child while waiting for therapy. The new guide responds to that need, offering clear, evidence-based advice and resources to help families feel confident starting interventions at home.

“The project was truly a team effort, with therapists and families at its heart. I’m very grateful to everyone who contributed. Although my research focused on co-designing ways to improve the support offering to families when partnering to deliver a rehabilitation programme, it became clear that families also needed accessible guidance from the moment of diagnosis so they didn’t miss valuable opportunities to help their child."

Katrina Galvin is one of the parents who has been heavily involved in Jill’s research and development of the guide. Her son Jake, aged 5, lives with hemiplegia. She said:

"To be involved with Jill's project and work alongside other parents and therapists to produce this guide has been a real honour. I know how important early intervention is for children like my son but I also understand all too well how hard these therapies can be to access. The guide will be an invaluable resource to parents who are in the same situation as we were, as it puts them in control and helps them to understand the principles behind these evidence-based interventions, maybe even before they meet an occupational therapist for the first time. I really hope we can get it out to as many families as possible" 

You can download the booklet ‘Understanding Hemiplegia’ from the Hemipower website Hemipower is run by parents who have been involved in the research and wanted to provide families with accessible, evidence-based guidance on rehabilitation for children with hemiplegia. 

You can find out more information about Evelina London’s REACH service on the Evelina London website. 

Read more about How a King's-led project is transforming early rehabilitation for children with hemiplegia.