A Rationale for Family Involvement in Long-Term Traumatic Head Injury Rehabilitation

Abstract

Advances in medical treatment and rehabilitation have improved outcomes for many survivors of traumatic head injury. Once medical sequelae are controlled however, many survivors face complex problems that preclude the opportunity for self-sufficient living. Newly developing therapies can address some of these issues, but this treatment is not available to all due to cost, geographic location, and the inability to address the broad multitude of problems faced by this population. In the absence of professional treatment, family members frequently find themselves serving as therapists, despite lack of training and problems that they may be experiencing with their own personal adjustment to the catastrophic injury. However, research with other populations of disabled persons has demonstrated that family members can be trained to be effective therapeutic agents to meet a broad range of issues and learn how to advocate for needed services beyond their capabilities. It is likely that this technology can also be used to help meet some of the long-term needs of persons with traumatic head injuries. Traumatic head injuries are one of the leading causes of death and disability in the United States. Each year more than 100,000 people die from head trauma, 50,000 to 90,000 experience significant intellectual and physical impairments that precludes their return to independent living, and more than 200,000 experience continuing sequelae that interfere with normal life (Anderson et al., 1980; Caveness, 1979; Jennett & MacMillan, 1981; Kalsbeek et al., 1980; Kraus, 1978; Olson & Henig, 1983). Head injury ranks third as a leading neurologic cause of disability, behind cerebrovascular disease and epilepsy, and ahead of other more commonly recognized disorders such as Parkinson's disease, primary brain tumor, spinal cord injury, multiple sclerosis, cerebral palsy, and congenital muscular distrophy (National Head Injury Foundation, 1982). It is the primary cause of neurologic disability for individuals under 34 years of age (Kraus et al., 1984). Although major advances in the acute medical management of head injury patients have developed over the past decade, advances in long-term rehabilitation have not followed as rapidly. Immediately following a traumatic head injury, the patient can expect comprehensive and competent medical care from interdisciplinary treatment teams. Medical developments over the past decade have helped to improve the prognosis for once considered terminal cases (Bakay & Glasauer, 1980; Jennett & Teasdale, 1981). Psychosocial treatment is also generally available during the initial months of adjustment to help s patients accept their disability and adapt to a new life-style, help them locate sources of financial support, and encourage them to continue treatment (Bond, 1979; Govthier, 1980; Panting & Merry, 1972). Early intervention is also directed toward helping the family unit adjust to major changes in roles, expectancies, and interaction as a result of the trauma. Similar to other chronic and traumatic medical disorders, family members need special help in adjusting to the catastrophe as well as to the beginnings of a new and significantly altered life (Kubler-Ross, 1969; Muir & Haffey, 1984; Rosenthal, 1984).