The goals that children, young people and their families set in rehabilitation following an acquired brain injury (ABI) enable professionals to understand their priorities at different stages of recovery.

The Children’s Trust (TCT) and Cambridge Centre for Paediatric Neuropsychological Rehabilitation (CCPNR), have recently published studies that explore the goals set in their different settings. By reviewing these goals and their different rehabilitation contexts, the services are learning about the individual and evolving needs of children and young people with ABI.

What were the studies? The two studies exploring the children’s rehabilitation goals have been carried out in very different services. The first (Kelly et al., 2018) analysed 860 goals set at TCT in their residential, multi-disciplinary rehabilitation service for children and young people with severe ABI. These were goals from young people and their parents who were usually in the sub-acute stage of their ABI (i.e. they had been discharged from hospital recently).

The second (McCarron et al., 2019) analysed 326 goals set by children and young people at the the CCPNR, a community-based, multi-disciplinary neuropsychological rehabilitation service for children with mild to severe ABI. The service aims to meet the needs of children and young people living in the community who have complex acquired needs that cannot be met by non-specialist services. These children tend to be in the post-acute stage of their ABI (so they no longer need acute medical care).

In order to explore the priorities for children and families, both studies mapped the goals to the International Classification of Functioning and Disability (ICF) (WHO, 2017) and the related Child and Youth Version (ICF-CY) (WHO, 2007).  The goals set in these different contexts (residential rehab vs community rehab) and different stages of recovery (sub-acute vs post-acute) help to provide important insights for those working with CYP with ABI.

What were the studies?

1. Rehab goals were wide-ranging In both services. The overarching, and perhaps unsurprising, similarity between the findings of both studies is the level of variability between the goals of individual children.

Goals from both services spanned across many chapters of the ICF, demonstrating the need for services that are skilled in, and able to adapt to, the many different needs of children and young people who have had an ABI. This highlights their complex, interdisciplinary needs and demonstrates the challenge for services to be able to measure individual outcomes for a wide variety of needs, as well as to demonstrate the impact of the service.

2. In both services, the majority of the goals were set within the activity and participation (AP) domain. This helps us to understand that at every stage of their rehabilitation being able to take part in activities that they want or need to do, and participate in their daily lives and wider society, is of the upmost importance.

What were the differences?

Although the most common domain for goals in both studies was AP, the chapters where the most goals were set varied. In the residential rehabilitation setting, mobility and self care-based goals were most frequently prioritised.

In the community neuropsychological rehabilitation service, major life areas and interpersonal interactions and relationships were the most prevalent AP areas. This suggests a shift towards goals of increasing social complexity. This difference could be related to the remit and acceptance criteria of the services.

However, it could also demonstrate an emerging focus of priority for the children who have had an acquired brain injury as their social and rehabilitation context changes. In the residential rehabilitation setting, the skills that are developed in early childhood, i.e. walking, talking and using the toilet, are often the key focus of young people and their families.

As they return home, and access daily life at home, school and in the community, these early priorities may either have been resolved, or the child’s focus shifts to the increasingly complex social consequences of their ABI, such as their ability to manage in school or make friends. Furthermore, the impact of cognitive, emotional and behavioural challenges, can often be hidden in the structure provided by a sub-acute rehabilitation setting.

These difficulties can become more apparent with the increasing independence needed for participation at home, at school and in  the community. In line with this idea, there was also a growing emphasis on environmental factor (EF) goals in the community setting (20 per cent of all goals, as opposed to nine per cent of goals in the residential setting).

The majority of those accessing residential rehabilitation services will have come straight from an acute hospital, so may not be aware of the environmental barriers they will face. Furthermore, within the residential rehabilitation setting, children and their families may still be hopeful that they will make a full recovery and not need any changes within their environment.

Like the AP goals, the differences in the types of EF goals in the two settings reflects an increasingly social focus of young people in the community. In the residential setting, ‘products and technology’ was the most common type of EF goal, but ‘support and relationships’ was most important (and the second most important area overall) for children in the community.

Environmental factors impact on the ability of a young person to achieve their goals around activities and participation, so in the real-world community setting, it is unsurprising they become an increasingly important area for rehabilitation work.

Interestingly, there was a far lower percentage of goals set in the body structure and function (BS/BF) domains in the residential rehabilitation service (nine per cent), when compared to the community setting (28 per cent). In the community setting, goals in this category were predominantly related to mental functions (and most commonly emotional functions), whilst there was greater variety of the goals in the residential setting with increased emphasis on physical functions. This is likely due to the nature of the services.

However, it may be reflective of CYP’s psychological adjustment to their post-ABI identity (Gracey et al., 2015; Wales et al., 2019) and the need for incorporating psychological work into rehabilitation.

What does all this mean?

1.  It is clear that children and young people who have an ABI require an individualised service that is tailored to their specific needs and goals with a strong focus on activities and participation

2.  In order to provide intervention for these wide-ranging goals, services need to be resourced to provide an integrated interdisciplinary approach

3.  Goals need to be reviewed regularly as it is likely that they will change as young people acquire skills and come to understand the impact that their ABI will have on their identity, future and everyday life

4.  The increased focus on environmental goals in the community directs clinicians, services, schools and other organisations to be able to make environments accessible for young people with ABI in the community.

Should young people be exposed to a greater extent to some of the challenges in environmental and social participation earlier in their rehabilitation? Would this help them better prepare for their transition from residential to community settings, and result in better medium and long-term outcomes for children and their families?

Or is the complex and changing nature of the needs of children with ABI best met by specialist residential and community teams maintaining different expertise while maintaining a strong dialogue at key transition points to support their evolving goals?

These questions cannot be answered without research into these areas. ABI is a lifelong condition, requiring long term studies on the evolving impact upon children and their families as they develop throughout childhood, adolescence and adulthood. What we can take from these two studies now is the importance of letting children and young people define what is important to them in rehabilitation.

This commentary was co-written by Gemma Kelly (physiotherapist), Lorna Wales (occupational therapist), Robyn McCarron (psychiatrist) and Suzanna Watson (psychologist), clinicians from The Children’s Trust and the Cambridge Centre for Paediatric Neuropsychological Rehabilitation.

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