Pediatrics
Health-Related Quality of Life of Children with Brain Injury
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Diseases and injuries are usually described in terms of their impact on physical functioning (such as the ability to move, hear, see, eat, and so on), but pediatric brain injury (BI) can result in problems with thinking and memory, as well as behavioral and emotional functioning. The World Health Organization has recognized the importance of Health-Related Quality of Life, which describes a condition such as brain injury in terms of its impact on day-to-day functioning, peer interactions, family adjustment, and school achievement. Sometimes children can be described as physically “recovered” from a significant brain injury when, in fact, health-related quality of life is impaired.
Children and adolescents who have had moderate to severe brain injuries can experience longer-term problems in directing, planning, and modulating behavior (called “executive functions”), slowed thinking, problems with memory and learning new information, and speech/language impairment. Of course, these problems can impact the child’s functioning, but they also directly affect the family’s adjustment. In turn, the family’s level of functioning, resources and support impact the child’s progress.
When a child or adolescent has suffered significant brain injury, the most immediate concerns revolve around medical status. Problems in behavior and learning are often not apparent until weeks or months after the medical crisis is over and the child has been discharged from the hospital. Unfortunately, families are rarely provided with information about follow-up assessment and treatment for the longer-term problems related to the brain injury.
The following suggestions are made for families who may need ideas about where to look for help:
In larger cities, health-care providers who specialize in BI can often be found in hospitals, universities, and in private practice. Caregivers may want to ask the hospital or rehabilitation center where the child was initially treated for specific names and numbers or other referrals. Local doctors (especially neurologists) and vocational/physical rehabilitation professionals often have this information. Be persistent. The insurance provider may also be able to provide the name of a therapist and/or evaluator who specializes in brain injury.
In smaller cities and rural and otherwise underserved areas, caregivers can still request referrals from hospitals, doctors and rehabilitation clinics, as well as insurance companies. But if local specialists are not available there are other options. Local advocacy groups for children with learning disorders or attention-deficit problems can be a valuable resource, as these children often experience learning and behavior problems similar to children with BI. These advocacy groups can give advice on navigating the public school system and effective ways to request resources/support. Joining a local or Internet-based support group for BI is also recommended. Such groups can provide fist-hand information about referrals and other resources, as well as emotional support and parenting tips.
Georgia Tool for Life site. Under “LD” (Learning Disability) find comprehensive sources for obtaining services of all types including social and educational.
Neurotrauma Registry. Brain Map details what area of the brain performs what function.
Dr. Taylor is Professor of Pediatrics and Psychology at Case Western Reserve University, Cleveland, Ohio. He is also Director of Pediatric Neuropsychology Service, Division of Behavioral Pediatrics and Psychology, Rainbow Babies and Children's Hospital, University Hospitals of Cleveland. He has published extensively in the area of outcomes after pediatric TBI and low birth weight. Dr. Taylor is Board Certified in Clinical Neuropsychology by the American Board of Professional Psychology. He has been on the editorial boards of a number of child psychology and neuropsychology journals and is on the Maternal and Child Health Review Committee, National Institute of Child Health and Human Development.
Dr. Stancin is Head of the Division of Child Psychology in the Department of Pediatrics at MetroHealth Medical Center in Cleveland, Ohio. She is also an Associate Professor of Pediatrics, Psychiatry and Psychology at Case Western Reserve University. In 2001, Dr. Stancin received the Chairman's Award for Research Excellence in the Department of Pediatrics at MetroHealth Medical Center. She serves as an editor and editorial board member for numerous journals. She has published extensively in the area of pediatric brain injury.
References:
Burgess, E.S., Kaugars, A.S., Taylor, H.G., Drotar, D., Yeates, K.O., Wade, S.L., & Stancin, T. (in press). The impact of pediatric traumtic brain injury on the non-injured child’s behavior and quality of the sibling relationships. Journal of Developmental and Behavioral Pediatrics.
Stancin, T., Drotar, D., Taylor, H.G., Yeates, K.O., Wade, S.L., & Minich, N.M. (2002). Health related quality of life of children and adolescents following traumatic brain injury. Pediatrics, 109 (electronic article), e34.
Schwartz, L.S., Taylor, H.G., Drotar, D., Yeates, K.O., Wade, S.L., & Stancin, T. (in press). Long-term behavior problems following pediatric traumatic brain injury: Prevalance, predictors, and correlates. Journal of Pediatric Psychology.
Taylor, H.G., Yeates, K.O., Wade, S.L., Drotar, D., Stancin, T., & Montpetite, M. (in press). Long-term educational interventions after traumatic brain injury in children. Rehabilitation Psychology.
Wade, S.L., Borawski, E., Taylor, H.G., Drotar, D., Yeates, K.O., & Stancin, T. The relationship of caregiver coping to family outcomes during the initial year following pediatric traumatic injury. Journal of Consulting and Clinical Psychology, 69, 406-415, 2001.
Wade, S., Drotar, D., Taylor, H.G., & Stancin, T. Assessing the effects of traumatic brain injury (TBI) on family functioning: Conceptual and methodological issues. Journal of Pediatric Psychology, 20, 737-752, 1995.
Wade, S., Taylor, H.G., Drotar, D., Stancin, T., & Yeates, K.O. Childhood Traumatic Brain Injury: Initial impact on the family. Journal of Learning Disabilities, 29, 652-661, 1996.
Wade, S., Taylor, H.G., Drotar, D., Stancin, T., & Yeates, K.O. Family burden and adaptation during the initial year following pediatric traumatic brain injury (TBI) in children. Pediatrics, 102:110-116, 1998.
Wade, S.L., Taylor, H.G., Drotar, D., Stancin, T., Yeates, K.O., & Minich, N.M. (2002). A prospective study of the long-term caregiver and family adaptation following brain injury in children. Journal of Head Trauma Rehabilitation, 17, 96-111.