Your Physician And Traumatic Brain Injury
Friday, March 25, 2005
When a child suffers a traumatic brain injury, the personal lives of everyone in the family change. Parents vacillate between feelings of fear, anger, and hope. They must revise their hopes and dreams for their child. They must make decisions about which they have no knowledge or preparation. How does one know what is best for one's child in these unfamiliar circumstances? When the child leaves a protected environment, such as a rehabilitation center, to return home, the effort to adapt the home, the family's needs and lifestyle, and parents' work schedule to the changed situation is overwhelming.
Although each family adjusts differently to the life changes brought on by brain injury, the goal is always to help the child develop, as much as possible, into an independent and competent adult and to have a fulfilling personal and social life. Parents must therefore assume several roles: primary caregiver, case manager, patient advocate, therapist, and researcher. Providing daily, around-the-clock care, medication, and social and cognitive stimulation leads to emotional and physical exhaustion. Traveling to appointments with physicians and other members of the health-care team and participating in therapy interfere with one or both parents' work schedules. If both parents work outside the home, one will probably have to resign to become the primary caregiver.
We've learned survival tips from our experiences, including:
Take turns catching up on sleep
Take breaks for relaxation
Eat well and exercise to help weather the "crisis of the moment"
Work together to decide on an approach to a problem and divide the work based on individual strengths—and never give up hope
Develop a support network to provide respite care
Talk to friends, acquaintances, librarians, and health-care providers, and attend TBI conferences and meetings of support groups
Child and family face daunting obstacles once that child returns home, including securing insurance coverage for required outpatient therapies; finding resources, which may require coordinating the services of many agencies to meet the child's needs; and reentering the school system. Parents need to develop a life plan for their child—not rely on episodic interventions.
What can your pediatrician do to help
Your family pediatrician, can play a significant role in providing support and continuity of care for a child with brain injury by, for example, explaining options and alternative treatments, evaluating and coordinating needs, providing documentation for resource agencies and referrals, refilling prescriptions from other providers, identifying community resources, and providing current literature and references. Your doctor can also recommend that parents contact the state's department of rehabilitation and the national or state brain injury association as a starting point for finding information.
