This fact sheet aims to provide guidelines and principles that can be applied to all disciplines involved in providing rehabilitation to pre-school aged children who have sustained an acquired brain injury.
Acquired brain injury pertains to an injury to the brain acquired after a normal birth and neonatal period. Mechanisms of injury include trauma (e.g. fall, MVA, non-accidental), illness (e.g. encephalitis, meningitis), hypoxia, stroke, epilepsy surgery and tumour.
What differentiates ABI from developmental conditions?
Type and severity of injury
Factors such as mechanism of injury, severity and age brain injury was acquired, result in a large variability in the ongoing sequelae and disability.
For example, we now know that outcomes are poorer for children who sustain severe brain injury at a young age – the longer the brain has to develop normally, the better. Pre-frontal injury is a strong indicator for ongoing difficulties in social, behavioural and cognitive development. Difficulties with insight also have a significant impact on rehabilitation outcomes.
Where possible, try to gather information about the child’s brain injury prior to commencing assessment and intervention.
Cognitive impairments vs intellectual disability
Children with ABI may present with specific areas of cognitive difficulty, often having a variable profile, whereas most children diagnosed with intellectual disability will usually have global deficit across all areas. Many children with ABI have significant cognitive deficits but do not fall into the intellectual disability range.
Impact of hospitalisation
Long-term hospitalisation, medical trauma and recovery in the early years can have a significant impact on a child’s emotional, social and psychological development. Common sequelae include poor sleep patterns, lower frustration tolerance, anxiety and behavioural difficulties. A secondary impact may occur due to over-protective parenting, leading to diminished opportunities for participation.
Grief and loss
Children with ABI may grieve the loss of abilities, anticipated life goals, cherished activities and friends, while parents will grieve the loss of the child they had. Coming to terms with their child’s disability can take a long time and have an impact on their parenting style or ability.
The long-term outcome for children with ABI is influenced by many factors including severity and age of injury, insight, family, school and social supports. For these reasons these outcomes can be difficult to predict. For example, for young children with frontal lobe injury, the full extent of the sequelae may not be known until they are of an age where skills involving the frontal lobes develop. For example, executive skills, problem solving, emotional regulation, planning. These children may seem to deteriorate compared to other children.
The developmental trajectory for a child with ABI often shows a widening gap with peers due to the impact of the sequelae over time. This often results in isolation as they have difficulty with social skills and regulating their emotions.
Principles of assessment
Know the goals
What are the goals? A top-down approach is recommended to help guide the type and timing of assessment. Using a top-down approach involves:
- gathering information from the family and stakeholders to provide a picture of the child’s typical performance in different environments
- observing the child performing daily activities
- having clear knowledge of the parents’ and child’s goals.
Based on this, decide if and what formal assessments or informal assessment is required. The assessments selected should assist to formulate a treatment plan to meet the child’s rehabilitation goals.
Standardised assessments play an important role in giving information on specific tasks and skills. Educational institutions and insurance companies may prefer standardised information. However, the disadvantage of these assessments is that not all are standardised for all paediatric populations, they are carried out in clinical situation (not contextualised) and may not provide an accurate picture of the child’s capacity and ability. It is recommended that parents and school staff report their observations so they can be used to complement standardised assessment.
Role of informal/non-standardised assessment
Engaging children in typical play activities provides contextualised information and will increase scope of your assessment (e.g. attention in various environments or problem-solving skills with different tasks). The use of a routine-based assessment and task analysis allows for improved understanding of the various cognitive, physical, sensory and language barriers contributing to performance breakdown.
An integrated approach (that is, assessing alongside another health professional or sharing assessment findings) is beneficial in understanding the interplay of cognition, communication, sensory and physical skills for performing everyday tasks. Therapy plans that reflect an understanding of the child’s strengths and weaknesses can then be formulated.
Some children may recover to a premorbid level quickly after an ABI, but some children (dependent on type of brain injury) will have ongoing issues with new learning. This and other sequelae such as fatigue and speed of processing may affect acquisition of new skills. Therefore, re-assessment may be required as the child gets older.
Hypothesis testing is very useful when the issues are across all domains (e.g. behaviour). It is best implemented by a team of people. Hypothesis testing involves the identification of the problem, formulation of reasonable hypotheses, testing of hypotheses and formulation of intervention plan. It is about testing your theory of what problems are contributing to activity restriction and providing the best possible intervention plan. For example, Joseph has no friends at school. Contributing to this may be: difficulty with physical participation in playground activities, difficulties with comprehension and abstract language or difficulties with inhibition or impulsivity.
Normal development is variable
‘Normal’ development is variable. It is important for clinicians to understand this variability so that there is proper interpretation of the child’s performance, with sensitivity to what may be a consequence of brain injury. It is important to not diagnose a behaviour or performance as abnormal when it may be within the norm. For example, young children will typically have some challenging behaviours at times as they learn about limits and regulating their emotions.
Principles of intervention
Rehabilitation for young children with an acquired brain injury will benefit from the focus being on maximising function in activities the child wants to do, needs to do, or is expected to do in their everyday life.
Families may need support to develop goals as they may still be learning themselves about the impact of the brain injury and perhaps are unsure of what to expect of their child. There are many tools to assist in the goal setting process. For example, routines based assessment, family goal setting tool and PEGs. For families from different cultural backgrounds, using a story or diagram of a journey may help them to articulate what their hopes and dreams are for their child. Clinicians need to be able to refine or adapt goals when they are thought to be unrealistic. For example, a goal may be for a child to have good verbal skills. If this is a long way off or unlikely, the clinician may re-address the goal to attaining a communication system.
There is an abundance of information on the skills children require for optimal function in the classroom and playground. As a health professional working with young children it is important to support families to start thinking about school readiness from an early age, particularly their child’s ability to:
- get along with other children
- follow instructions and routines
- sustain attention
- participate in self-care.
Attendance in Kindy and pre-school programs should be encouraged. Health professionals can support families by liaising with early education programs and/or carrying out some sessions in the centre. Health professionals can encourage improvement in the child’s skill development by providing training to teachers/teacher/aides and carers and facilitating consistent approaches within the home and kindy environments (behaviour management strategies, how to present verbal information, etc).
Embedding routines into practice
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. For example:
Bath-time routine: undressing, upper limb stretches, body part naming, sequencing.
Dressing routine: learning concepts (back, front, in, through), sequence, body parts, balance.
Motivation for change and adaptation is critically important for a child to achieve their goals. When a child presents for therapy, a practitioner may face two things that will impact on a child’s motivation to participate in therapy.
- The child may not be a willing partner to the decision to seek support.
- Emphasis on deficits from sources external to the child.
Motivation not only applies to the therapy sessions but generally the routines and tasks other people want them to work on at home and school.
It is important to educate families about the benefit of recreation and fun activities for the child from an early age. This will help the parents to establish and embed motivating activities into the child’s routine.
There are two books on this topic that are recommended as being useful to clinicians:
The Art and Science of Motivation. Edited by Jenny Ziviani, Anne Poulsen and Monica Cuskelly. JKP publisher 2013
Goal Setting and Motivation in Therapy. Edited by Anne Poulsen, Jenny Ziviani and Monica Cuskelly. JKP publisher 2015.
Frequency and intensity
When children have multiple impairments, or are likely to have a life-long disability it is very important to guide the family on priorities for their child. This guidance paired with the timeliness of interventions by all clinicians will hopefully prevent the child and family from burning out. It is better for families to focus on a just a couple of goals intently rather than trying to work on too many goals daily and weekly. When children do not reach their desired goals it can be worrying for families and they may feel as though they have ’failed’. Parents who are feeling overwhelmed may not be assertive enough to speak up which can lead to them withdrawing from supports and therapies. Goals may need to be addressed every 3-6 months, dependent on progress for young children.
Parents as partners
The shared management model (see Diagram 1) illustrates the optimal progression for families as they become more informed about their child’s disability. Clinicians play a valuable role along the way in sharing information with families. Families will often seek information and sometimes they will get it from non-reputable websites. Clinicians can support families by providing reliable, evidence based information.
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