How brain changes shape identity, participation and everyday life

This paper introduces a model to guide rehabilitation for children and young people after acquired brain injury (ABI). ABI is not the same as DEE-SWAS. It follows an injury, rather than ongoing epileptic activity, and is typically managed through rehabilitation rather than seizure-based treatment.

The authors argue that recovery is not just about rebuilding skills. It is shaped by a complex mix of biological, psychological, social and environmental factors that change over time as the child develops.

A key idea in the model is that children are not just recovering abilities. They are also working out who they are in relation to what has happened to them. Identity becomes central to how they cope, participate and move forward.

The model describes this as an ongoing, cyclical process. Children learn about themselves through experience, including what they can do, what is hard, and how others respond to them. These experiences shape their self-beliefs and expectations.

Emotional processes, especially how a child evaluates themselves, play an important role. These influence motivation, willingness to try, tolerance for challenge, and the ability to regulate emotions and behaviour.

This means that engagement in rehabilitation is not just about capacity. It is also about how a child feels about themselves and whether they believe they can succeed.

The paper highlights the challenge for clinicians and families in balancing skill development with emotional and identity needs. Pushing functional goals without considering identity can reduce engagement and increase distress.

While this model was developed for acquired brain injury and should not be directly applied to DEE-SWAS, it highlights something important. Changes in a child’s abilities do not happen in isolation. They interact with identity, motivation and how a child understands themselves over time.

The model suggests that supporting identity, not just skills, can improve participation and outcomes.

Study recommendations:
The authors propose that rehabilitation should actively incorporate identity development processes to support engagement, participation and long-term adjustment, while noting that further development and evaluation of the model is needed.

Read the full article:
https://doi.org/10.1080/09602011.2022.2100794