Lucia Willadino Braga, PhD
Traumatic brain injury occurs without warning, often affecting an individual’s life in ways that pose unexpected obstacles that exact dedication and effort to overcome. As such, it requires special care and represents a challenge to all involved: the patient, the family, the medical practitioners, and even the community. The manner in which this care is rendered, the attitudes and approach that guide its delivery, and the level of commitment on the part of everyone involved with the brain injury patient are essential to the attainment of victories large and small in the often uphill road to recovery.
There are countless aspects to TBI that make it a difficult pathology to contend with. When TBI occurs in adulthood, patients are faced with often bewildering limitations in areas that were effortless in the past; tasks that were once easy become unbearably difficult, sometimes impossible, to complete. The world as it was must now be seen through the vantage point of different capabilities, and worked to accommodate a new perspective.
TBI in childhood, however, generates a whole slew of special needs and considerations, different hurdles to overcome.
When a child sustains a TBI, the damage to the brain, the interruption of normal development, and the natural progress of learning, motor skills and numerous other capacities can be overwhelming. The attention given to a child after TBI must focus not only on what was lost, but also, and perhaps most importantly, on what is left, on the potential that remains and on what can be recovered. Time has shown that children’s needs post-TBI are different from those of adults, demanding specialized, context-sensitive care geared towards the delicate developmental stages.
The SARAH Network of Rehabilitation Hospitals in Brazil has been treating children with TBI since the 1970s. SARAH has eight hospitals, located in various Brazilian cities: Salvador, Rio de Janeiro, Belo Horizonte, São Luis, Fortaleza, Macapá, and Brasília. The aim has always been to provide the most humanistic care possible, recruit the patient to be an active participant in his/her recovery, and respect the unique social settings that serve as the basis of each patient’s life.
One of the tenets of our work at SARAH has always been to treat the patient as a whole. With this as the guiding force, we developed an approach to treating the child with brain injury that involves practicing an integrated approach and training families to help stimulate the neurodevelopment of the child with TBI. By incorporating the parents, teachers and family into the rehabilitation process, we have been able to help children achieve better outcomes and make remarkable progress.
Since severe TBI often results in wide-spread damage throughout the brain, involving multiple neural systems and causing impairments in numerous functions, many professionals may be involved in the child’s care. At the SARAH Network, a multidisciplinary team, which works as a unit to avid the compartmentalization of knowledge, is assigned to each case of TBI.
We created a methodology for teaching family members about how to stimulate motor, cognitive, sensorial, and language development. This methodology also helps promote the child's independence in daily life activities and includes assistive technology to facilitate the child’s rehabilitation.
We begin with the child and family, who are the foundation of this approach. The team, working in a highly integrated manner with the family, creates an individualized program appropriate to the child’s developmental stage. The entire treatment is tailored to the specific needs of each child, respecting his personal interests, the context of his daily life and family setting.
First, the multidisciplinary team of professionals conduct their evaluations together. Then, they establish a joint program that integrates the objectives from the different specialties, as well as the family’s and child’s perspectives. For example, if the physical therapist wants to train prone-supination of the hand and the speech therapist requires language training, the family is given a drawing such as this one. Or, if the physical therapist sees the need for the child to train standing balance and the cognitive psychologist suggests exercising the mental function of classification, these two stimulation tasks can be integrated into one playful activity.
These drawings have been developed and refined over the course of decades by the SARAH Network of Hospitals. They total almost two-hundred and can be selected and organized into an individualized manual for each patient. The activities are related to different developmental areas (such as motor, cognition, language and communication, visuo-motor coordination, and independence in daily life activities) that are selected according to each child’s needs, interests and setting.
An average of eight to fifteen pages comprise each individualized manual, whose contents are adjusted to accommodate the child's evolution and progress. Although for many years these drawings were photocopied and assembled into small manuals, they are now published in a book and accompanying CD-ROM, and can be printed directly from the computer .
The family is given these manuals to take home and use as visual reinforcement for the activities learned during their period of intensive training. They return to the hospital every 2 weeks to evaluate the child’s progress, set new goals, adjust the treatment program and modify the training manual.
The use of simple household materials makes the activities more accessible, familiar and meaningful to the child. The neurodevelopment program is founded on realistic objectives based on each child’s motor, neuropsychological and communication prognosis and designed to include short-term goals that are easy to attain. It is also important to have long-term goals and to be attentive to the coherence between these and short-term goals. This integration and consistency demands a detailed assessment of the child’s prognosis in each area.
Many areas of development are commonly affected by brain injury, requiring the involvement of a large number of professionals in the child’s rehabilitation. Our methodology works with two case managers to integrate all of the information and act as a link between the team and the family. This professional team provides constant guidance and orientation, when needed, in a process that empowers the family to directly participate in the child’s rehabilitation.
To confirm the outcomes observed clinically over the years, we conducted a randomized, controlled trial study to assess this individualized, context-sensitive, family-based approach to neurodevelopment. The results of our study have demonstrated that this methodology is effective and yields better outcomes than the conventional professional-only approach to treatment .
It is important that we consider alternative means of rehabilitating individuals with brain injury. The work that we do at the SARAH Network does not succeed solely because of what it offers the patient, but also because of what it requires of the patient and the family. But there are other reasons that this integrated approach to rehabilitation works, such as: 1) Rehabilitation activities performed by the family can be incorporated into daily home life, and so they are done more often; 2) Motor development presents better outcomes when placed within a context, considering the neuronal group selection theory; 3) Rehabilitation activities conducted in a playful manner, at home, can seem more natural to the child who sees them as “play”, resulting in greater compliance with the treatment program. And finally, the affective family/child relationship can be an important variable to the development of the child with TBI.
1) Braga LW, Campos da Paz Jr. A, (Eds.). (2005) The child with traumatic brain injury or cerebral palsy: a context-sensitive, family-based approach to development. Oxford, UK: Taylor & Francis
2) Braga LW, Ylvisaker M, Rossi L, Souza LN. (2005) Cognitive development and neuropsychological disorders. In: Braga LW, Campos da Paz Jr. A, (Eds). The child with traumatic brain injury or cerebral palsy: a context-sensitive, family-based approach to development. Oxford, UK: Taylor & Francis