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

Hemiplegia is a form of cerebral palsy that causes weakness or paralysis on one side of the body. It affects around 1 in 1,000 children in the UK and often results in challenges with movement, coordination and daily tasks like dressing, eating, or playing.

Therapy can improve function, but it often requires more time and attention than health services can provide alone. Parents are increasingly expected to deliver therapy at home, yet many say they don’t feel equipped to do so. Without clear guidance, families can struggle to know where to start.

This is where Jill Massey and her team have stepped in to make a difference.

Supporting Families from the Start

Funded by the National Instituted Health and Care Research (NIHR) and supported by the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King’s, the Parents as Partners in Rehabilitation (PaPeR) project was designed to enhance support for parents involved in the co-delivery of interventions. Through the co-design process, it became clear that parents would also value support at the time of diagnosis. In response, one of the project’s key outputs is the Understanding Hemiplegia guide, developed to provide timely information and reassurance during this critical period.

Building on insights from NIHR-funded research, the project has brought families and clinicians together to co-design a practical, evidence-based guide to support parents partnering with therapists to continue delivering evidence-based intensive upper limb interventions at home, following hands-on learning in the clinic.

This collaborative approach has led to a valuable resource that provides families with essential tools and guidance at a critical time - supporting them early on in the care process, building their confidence to take an active role in their child’s rehabilitation, and strengthening partnership with healthcare professionals.

Partnership in action

The PaPeR project was built on equal collaboration between parents and healthcare professionals. Using an experience-based co-design process including interviews, priority-setting and co-design meetings, the team gathered invaluable insights into the challenges families face and the kind of support they truly need.

Parents praised the safe, inclusive atmosphere:

• “[The facilitators] always encouraged to speak and give feedback. Felt like a safe space with people who understood where you’re coming from.” - Parent

• “It was very interesting to hear the perspectives of the other parents.” - Parent

• “On this journey you sort of expect everyone is coming at it from the same perspective and although [the] challenge is similar people have different experiences - child, access to rehab, situation geographically etc.” - Parent

Clinicians also found the process refreshing:

• “It’s been so valuable for me as a community therapist to ‘hear’ the parents’ voice around diagnosis, accessing therapy, [and] partnering during the programme.” - Therapist
• “Gaining understanding of parents' experiences and challenges which [we] had not been aware of before.” - Therapist

The partnership model was seen as mutually beneficial:

• “Clear collaboration with direct benefit for patients, families and therapists.” - Participant

The Parent Guide

A key outcome of the PaPeR project is the co-designed parent information guide, developed with input from both families and clinicians. This practical guide offers clear, accessible advice to help parents support their child’s upper limb rehabilitation from diagnosis onward.

Written in everyday language, it includes practical advice, insights into the emotions and feelings that come with a diagnosis and the evidence and theory behind interventions.

Parents described the guide as a valuable, hands-on resource:

• “It's great for parents to get an understanding as it can be very overwhelming.” - Parent

Healthcare professionals recognised its value immediately, noting its potential to support families:

• “[The guide] really helps parents but also health care professionals to understand how to support parents… From where we started to where we are now made such a big difference and will help parents [and] children in the future.” - Healthcare Professional
• “Such important work, I’m so happy this is happening. This can help so many parents and kids.” - Healthcare Professional

By prioritising accessible advice, the guide “offers clear, evidence-based information designed to educate and empower parents to take an active role in their child’s therapy, marking an essential shift toward parent-inclusive, home-based care,” according to Jill.

Making an Impact

The PaPeR project is already making a tangible impact, with early outreach and engagement activities laying the foundation for long-term success.

The parent guide has been shared at key events, including the British Academy of Childhood Disability conference. Researchers have also presented the guide to community therapy teams in Birmingham and Yorkshire, with several expressing interest in promoting its use.

The project has also engaged with the emerging Cerebral Palsy Coalition, which comprises over 60 UK organisations. Their support could influence policymakers and significantly amplify the guide’s national impact.

As part of its next phase, the team is excited to launch the guide on 4th October, chosen to coincide with World Cerebral Palsy Day on 6th October. The launch event aims to be both a celebration and an opportunity to bring together families, clinicians, and wider stakeholders. Parents and their children with hemiplegia will attend, alongside representatives from the charity sector - including Action CP, Hemihelp (part of the Contact family), and Breathe Magic. Therapists, MPs and policymakers, representatives from the Evelina, and the Royal College of Occupational Therapists have also been invited.

Future initiatives surrounding the project will focus on increasing the guide's visibility and embedding it into everyday practice. This includes a policy brief for NHS trusts, rehabilitation services, and policymakers, as well as a proposed national audit of paediatric rehabilitation services.

Furthermore, Jill and the team are excited about the launch of a website for the guide. This site will serve as an easy-to-use platform for families and professionals, increasing its reach and impact.

With the continued dedication of parents, clinicians, and researchers, the PaPeR project is set to create lasting change, improving outcomes for children with hemiplegia and ensuring families feel supported every step of the way. As the project expands its reach, it continues to redefine how care for children with complex conditions is delivered and shape the future of rehabilitation for children, one family at a time.