This fact sheet aims to provide principles and guidelines for clinicians involved in rehabilitation of children who have sustained an acquired brain injury. Rehabilitation for this population needs to be more than the mechanical application of standardised assessments and interventions. It involves building a collaborative relationship with the child, family and other stakeholders while acting as a source of optimism, creativity and flexibility in the face of challenges and obstacles.
Understanding the child with an ABI
Children with an ABI may have similar impairments to children with developmental disability, but differ in the following ways:
- Children with an ABI are adjusting to a loss of function with the subsequent changes to their feeling of identity and self.
- Their family also are grieving the loss of the child they had.
- Frontal lobe damage has significant impact on the developing child.
There is a higher incidence of families in distress due to the nature of the recovery journey (see the ABI rehabilitation – Transition from hospital to home fact sheet for more information).
Children are not little adults; rehabilitation for this group needs to look different than rehabilitation of an adult with ABI. Family health and function will have significant impact as children rely totally on their parents for learning about, and participating in life.
Children will also have varying needs at different stages (infancy, preschool, primary school, high school) so supports will need to be tailored to their needs at each stage.
Typical sequelae of ABI include fatigue, slowed processing, poor attention and memory difficulties. These may not be so obvious in general presentation but will have an impact on recovery and rehabilitation progress.
Goal setting and engagement
For many families the rehabilitation journey is a long one. Assist the child and family to articulate their goals and help them to understand the connection between the recommended therapy and the goal. Integrate the child’s goals into the program to increase the effectiveness of interventions and their engagement in them.
Clinicians and stakeholders need to understand the overarching importance of self-determination (autonomy, relatedness and competence) for academic, occupational (everyday roles) and social success.
Assessment to guide intervention needs to include assessment in context, should be ongoing (PLAN > DO > REVIEW) and collaborative (seek information/share information with others so that your assessment results reflect the child’s capacity, everyday function and barriers to intervention).
- Take time to observe the child in everyday activities.
- Collect data from stakeholders and formulate hypotheses to explain limitations in participation.
- Use formal assessments if indicated by your observation and feedback from stakeholders.
Most effective intervention occurs in meaningful contexts as it has been shown to result in better generalisation and maintenance of skills. Target routines as well as specific activities.
Interventions need to span impairment, activity and participation i.e. avoid only working at impairment level. Utilise compensatory strategies, modifications and equipment. This will help to enable participation whilst still working on improving skills, as the lack of participation results in secondary health and wellbeing issues.
The role of rehabilitation professionals needs to include teaching, training or coaching for carers and stakeholders as children need to practice in context with consistent guidance or supervision.
Prevent learned helplessness by supporting everyday routines. Even small amounts of participation will help child to understand they have a role to play in the routine (e.g. making choices, lifting legs, co-operating).
All interventions need to be aimed at increasing participation or decreasing dependence and burden of care. When we write goals such as ‘improve function of arm or leg’, ‘improve eating or talking’, we infer that the only goal is remediation or cure – i.e. elimination of the impairment/disability.
Integrative collaborative approach:
Work with others to establish an intervention plan which is achievable for both child and family. Remember to consider:
- the child’s age
- balance (work, rest, play)
“Think outside the box”, that is, move beyond typical medical model of intervention. Consider coaching models, different learning approaches and utilising everyday age appropriate activities for goal achievement (e.g. gym, sports, scouts, dancing).
Prepare for transition to adulthood and adult systems from a young age by working to reduce dependency and promote self-advocacy early.
Children will need assistance, guidance and support from their family to attain and improve their skills. An integral part of the intervention plan will be supporting the family to embed strategies into everyday routines.
Realistic goal setting
Clinicians need to be mindful that the child may have numerous needs. Give permission to family to prioritise other areas of their life as well.
Empower families by providing information/education about their child’s condition and options. In the acute phase of rehabilitation the family will be in the early stage of learning about their child’s condition and needs. As they learn about the condition and become more confident you can encourage a partnership in care. Ultimately it is hoped that families feel they can be the managers of their child’s care as time goes by.
Queensland Paediatric Rehabilitation Service
Queensland Children’s Hospital
Level 6, 501 Stanley Street, South Brisbane 4101
t: 07 3068 2950
t: 07 3068 1111 (general enquiries)
f: 07 3068 3909