The needs of children and families after brain injury – from understanding to action

Dr Anne Gordon, Consultant Occupational Therapist in Paediatric Neuroscience at the Evelina London Children’s Hospital and Trustee of the Stroke Association, has written a guest blog about the needs of children and their families following brain injury, providing an insight into what we can do to better manage their health and wellbeing needs.

It may be more helpful to consider [children's] support needs and abilities as different rather than better.

While the consequences of brain injury on children and families are increasingly recognised in the research literature, the adoption of learning in clinical practice lags behind. Workshops run to inform the RCPCH and Stroke Association childhood stroke guidelines revealed that timely provision of individualised information, support and resources is the experience of few, and access to individualised, evidence-informed rehabilitation close to home remains patchy.

We do know, however, from longitudinal studies and those that have sought the perspective of children, young people and their parents/carers, that related health conditions and needs emerge over time. Environmental, family, attitudinal and social factors are only some of the factors that may interact with the increasing demands on young people as they develop and progress through education and on to adult life.

Despite the increasing research evidence to the contrary, children with acquired brain injury are still often thought to ‘do well’ when compared to adults due to the plasticity of the developing brain. It may be more helpful to consider their support needs and abilities as different rather than better.

Our recent publication on the self-reported needs of young people and their parents illustrates that there is a similar prevalence of self-reported needs after adult stroke as after paediatric stroke. These needs extend beyond medical issues to daily life abilities including self-care independence, socialising, and academic progress.

The challenge of using our finite resources to deliver the most clinically and cost-effective care to children and families is not new. Recently published research has illustrated the adverse impact austerity has had on how well health, education and social care needs are met.

The gaps, anomalies and inconsistencies in the national data set, particularly for children with complex care needs, was highlighted in a recent National Children’s Bureau survey. While children and young people with complex needs and disabilities are often known to health, education and social care, a proportion of children with acquired brain injury (ABI) may not be. Their needs may, due to age, or early spontaneous progress in physical recovery, appear to be less complex. However, functionally disabling psychosocial, physical, communication and behavioural issues and needs may evolve and become more evident months or years after the event.

In my clinical experience many children with evolving needs after brain injury are not necessarily known to a local paediatrician, a Children with Disabilities Team or have an Education Health and Care Plan. It’s therefore important that we use every contact as an opportunity to signpost families and advocate for their needs across services.

What can we do to better meet needs, and enable the children and families in our care to manage their health and wellbeing?

  1. Lead with questions about concerns or needs.
    • Open a consultation with a question such as ‘What concerns do you have at the moment?’. Those concerns may not be ones that you can directly address, but you can help signpost families.
    • Challenge your existing style of communication. The #CYPMeFirst programme is an example of a resource for supporting clinicians in young person-centred care.
  2. Partner with service users and the charitable sector.
  3.  Being (and keeping) informed of local service.
    • Digital resources to inform clinicians and families about local resources, and initiatives such as the ‘Local Offer’ can support our understanding of what exists. Paediatric clinicians can have an active voice in the NHS digital strategy and local initiatives.
    • Recognise that a core part of our offer is to deliver a proactive public health approach, anticipating and guiding families towards information and support for likely future needs.
    • As role models for integrating health, education and social care, all of us need to have core knowledge about legislation and local services regardless of our specialism or provider organisation. Many children with brain injury don’t have a coordinated local service so we can make every contact count.
  4. Advocate.
    • Utilise outcome data sets that illustrate complexity of needs to raise the profile and importance of needs-based commissioning to commissioners and policy makers.
    • By documenting self-reported needs at an individual level, prospective service audits can have an impact through wider dissemination.