Helping children and young people cope after a parent’s brain injury: reflections from a stakeholders’ workshop

by Eloise Moliner, Assistant Psychologist (Research) at Brainkind

 

When we think about acquired brain injury (ABI), our focus naturally falls on the individual who sustained the injury. Yet, one of the most powerful messages emerging from a recent workshop funded by the Institute of Advanced Studies, University of Surrey, on Helping Children and Young People Cope After a Parent’s Brain Injury, was that brain injury rarely affects one person alone. The ripple effects extend throughout families, often profoundly shaping the experiences of children and young people. Children may experience disruptions to family relationships, emotional wellbeing, and education, while simultaneously trying to make sense of often sudden and significant changes within their family life. The workshop challenged attendees to think more broadly about who is affected when brain injury occurs and whose needs may be overlooked. 

Bringing together researchers, clinicians, charities and experts by experience, the event created a valuable opportunity to share ideas, challenge assumptions, and identify where important gaps remain. Across the day, a recurring theme emerged: children are often the “hidden patients” of brain injury rehabilitation. 

The day began with a keynote presentation from Dr Mia Moth Wolffbrandt, who presented findings from her doctoral research examining the long-term consequences of familial brain injury. Her work highlighted increased risks across educational, social and health-related outcomes for children affected by parental brain injury, including lower educational attainment and greater socioeconomic challenges later in life.  What particularly resonated with me was the combination of large-scale population data with the voices of children and young adults themselves. While statistics can demonstrate risk, the qualitative accounts brought these experiences to life. Young people described feeling overlooked, isolated and left out of conversations about a parent’s injury. Their accounts served as an important reminder that effective support is not solely about addressing practical needs, but also about ensuring children feel informed, involved and acknowledged. At the same time, the research highlighted that adverse outcomes are not inevitable. Family connectedness emerged as a key protective factor, with children often coping better when they felt emotionally supported and included within the family. In particular, the emotional availability of the non-injured parent appeared to play an important role in fostering stability and security. Simple experiences such as maintaining routines, spending time together, and creating opportunities for open conversations were identified as potentially powerful sources of support.  

This theme was developed further in Dr Caitriona Hughes’ presentation on maintaining family bonds after parental brain injury. Dr Hughes, who is Principal Clinical Neuro/Psychologist at Redford Court, the Brainkind Neurological Centre in Liverpool, built on the idea that relationships can promote resilience, and focused on how services can actively support parent-child connections throughout the rehabilitation journey. She argued that maintaining family bonds should be viewed as a routine component of rehabilitation rather than an optional extra. Support may look different depending on the stage of recovery – from preparing children for hospital visits in acute settings to supporting parents to maintain meaningful roles in their children’s lives within community and supported living services. While brain injury may alter how parenting looks, it does not diminish the importance of the parent-child relationship. Instead, support should focus on helping families adapt together, maintaining opportunities for connection, communication, and shared experiences throughout recovery. This message particularly interested me because it challenged the tendency to focus rehabilitation on the injured individual alone. 

Rachel Atkinson’s presentation provided a practical example of how this can be achieved. Working with parents experiencing cognitive communication difficulties following acquired brain injury, the talk described how shared reading was used as a structured communication activity designed to support parent-child interaction. Outcomes were encouraging, with parents reporting a substantial increase in confidence when reading with their children. The intervention incorporated simple strategies such as predicting story content, discussing events, asking questions and summarising information together. What I found particularly compelling was the simplicity of the approach. Shared reading is an activity familiar to many families yet, when combined with these communication strategies, it became a powerful tool for strengthening relationships, rebuilding confidence and creating positive interactions. One of the strongest messages I took from this presentation was that meaningful support does not always require complex interventions. Sometimes relatively small adaptations to everyday activities can have a substantial impact.  

Later presentations encouraged attendees to think more broadly about how children and families make sense of life after brain injury. Presentations from Dr Fiona Jeffries and Dr Megan Hofmann, and by Dr Freddie Byrne and Dr Jocelyne Kenny, emphasised the importance of understanding children’s experiences within their wider family and developmental contexts. A particularly memorable idea came from the concept of a “systemic rucksack” described in Byrne and Kenny’s talk. This is a collection of adaptable tools that practitioners can carry into conversations with children, young people and families affected by acquired brain injury. Rather than focusing solely on symptoms or problems, these approaches encourage curiosity, playfulness, storytelling and relationship-building. Examples included the use of puppets, drawing, and other creative activities, to help practitioners enter the child’s world rather than expecting children to engage within adult conversations. Their reflection that “tools and strategies might not be enough” stayed with me. Families often need support not only to adjust to practical changes, but also to make sense of what has happened and rebuild a shared understanding of their lives. 

The workshop concluded by looking towards future resources and innovations. Two very different but complementary presentations highlighted the value of co-production and creativity. The Silverlining Brain Injury Charity introduced The Woodland Friends, a children’s book developed by people living with brain injury. Through storytelling and animal characters, the book aims to help children understand brain injury while promoting empathy, kindness and resilience.  

My personal highlight of the workshop, however, was the final keynote presented by Dr Kate Dawes, who introduced Brain Connect – a digital platform designed to provide age-appropriate education and support for children, young people, families and professionals. Developed through an extensive programme of research and co-design involving children, families, survivors and clinicians, the platform includes animations, films, interactive learning activities, games and a clinician portal. For me, this was one of the clearest examples of research being translated into something tangible and practical. Rather than stopping at identifying unmet needs, the project demonstrated how evidence can be transformed into an accessible, scalable resource capable of supporting families in real-world settings. It was therefore the presentation that stayed with me the most and felt like a fitting way to conclude the workshop – leaving attendees with a sense of optimism about the progress being made in this field and excitement about what developments are on the horizon. 

Reflecting on the workshop as a whole, I was struck by the consistency of the messages emerging from very different perspectives. Whether discussing research findings, clinical interventions or digital innovation, speakers repeatedly emphasised the same core principles: children need information, acknowledgement and inclusion; family relationships matter; and support should be embedded throughout rehabilitation pathways rather than offered as an “add-on”. 

Perhaps the most important lesson from the day was that supporting children and young people affected by parental brain injury is not the responsibility of a single professional group. It requires collaboration between healthcare services, schools, charities, researchers and the families themselves. As awareness of these issues grows, the challenge moving forward will be translating this understanding into routine practice so that children no longer remain the hidden patients of brain injury rehabilitation. 

I am grateful to have had the opportunity to attend and contribute to the discussions throughout the day, listening to leading voices in the field, and seeing first-hand how research, clinical practice and lived experience can come together to drive meaningful change. The workshop certainly sparked a genuine curiosity about this area, leaving me eager to follow the next stages of this work and excited to see what comes next! 

To find out more about the workshop, please visit the IIAS, Surrey website: Workshop: Helping Children and Young People Cope After a Parent’s Brain Injury – Surrey IAS