Patient and public involvement in research focused on understanding the incidence and prevalence of acquired brain injury in children and young people

Lead Applicants: Laila Tata & Sophie Orchard

Lead Member: Nottingham

Acquired brain injuries can happen after birth due to head trauma, impact or illnesses like tumours or infections. We do not know how many individuals under 25 in the United Kingdom have an acquired brain injury, making it difficult to plan effective support leaving families needing significant primary and community care.

Our project uses electronic healthcare records entered by healthcare professionals when treating patients. We will be looking at patient records that have been anonymised to understand the burden of different types of brain injury, and health resource use. It is crucial that we involve patients and families with experience of acquired brain injury to understand their lived experience.

Aim

This PPI project aims to draw on the lived experience of families with experiences of acquired brain injury to better understand acquired brain injury and its longer-term impact on people’s lives. This will then help us to understand the healthcare pathways followed and health resource use to help us estimate the burden of childhood acquired brain injury and to ensure our burden estimates reflect lived experience. We will work with members to share research findings.

Approach

We aim to recruit 10 families (parent and child) with different types of acquired brain injuries and ages at injury to help us understand how electronic health records capture healthcare use and overall injury burden.

All activities will be designed with input from healthcare professionals, researchers, and a young person with a childhood acquired brain injury; all sessions will be accessible and adaptable for those affected differently by their injury. Members can participate online, by phone, email, or in person to suit their needs.

Sophie has already met with the current recruited families to discuss their needs. These conversations will be ongoing. From this, individual healthcare journey maps were co-developed to reflect through their experiences before, at injury and after. This session has already been useful for helping to identify children in the healthcare records. These sessions will be conducted for any others recruited.

We have 3 additional activities planned, whereby we intend to include all members subject to their availability, if unavailable we will use the funds to run the sessions for individual families online. In January 2026 we will host an online group introductory meeting to help members get to know each other, learn about the project and share their input. We will create a group agreement together to use in future sessions to promote a supportive environment. Between June-December 2026, a 3-hour face-to-face workshop will be organised where we can share research findings and gather feedback on how useful and understandable the findings are. For example, we will discuss estimates of the burden of acquired brain injuries. This session will be catered, and breaks will be provided. Finally, we will conduct up to 3 sessions over the funded period to gather members perspectives on any study result resources produced.

Amount: £2,115