Family Caregiving and Traumatic Brain Injury

By Degeneffe, Charles Edmund | Health and Social Work, November 2001 | Go to article overview
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Family Caregiving and Traumatic Brain Injury

Degeneffe, Charles Edmund, Health and Social Work


This article discusses the extensive challenges faced by those providing long-term care for family members with traumatic brain injury Areas reviewed include the nature of care needs, stress and burden experienced, and how families cope with care giving demands. This article concludes with a discussion of what social workers can do to reduce the demands of family Caregiving and subsequently, improve caregivers' quality of life.

Traumatic brain injury (TBI) represents a significant and growing disability classification in the United States. On an annual basis, an estimated 1.5 to 2 million people are injured. Among these, 70,000 to 90,000 experience long-term functional impairments (National Institutes of Health [NIH], 1999). Moreover, many who would have died in the past as a result of their injuries now survive because of advances in emergency health care technology (Cunningham et al., 1999). Also, TBI constitutes a major focus for social welfare and rehabilitative services. Lifetime costs of providing long-term care services per individual can exceed $4.5 million (Livneh & Antonak, 1997).

Although sizable public expenditures support the needs of people with TBI ,families provide most of the care (Allen, Linn, Gutierrez, & Willer, 1994; Knight, Devereux, & Godfrey, 1998), often without adequate professional support and intervention (Stebbins, 1997). As TBI can result in a variety of negative physical, cognitive, and psychosocial outcomes for affected individuals, it also affects the total family system. Family caregivers often experience anxiety, shock, disbelief, denial, and frustration (Mathis, 1984).

Social workers provide many needed services to these families immediately after injury as well as on a long-term basis (Lees, 1988). Immediate support needs often involve counseling to help adjust to the reality of the injury and its subsequent effects on the family system (Maitz & Sachs, 1995). Long-term care services focus on supporting families for the move of the injured person back into the home from either a hospital or a rehabilitation facility (Hosack & Rocchio, 1995).

Given its professional relevance, social workers need an awareness, understanding, and sensitivity to the unique needs of these caregivers. In doing so, their ability to accord more targeted, utilitarian, and cost-effective services maybe enhanced. An appreciation of the complexities of TBI family caregiving calls for a review of available research findings, clinical information, and advocacy recommendations. This article discusses family caregiving for people with TBI by addressing the nature of family caregiving, caregiver stress and burden, how family caregivers cope, and implications for social work practice.


The assumption of a caregiving role presents challenges to the existing family system, influenced by such factors as types of support provided, role changes, and relationship patterns. To gain a beginning understanding of how families perform, and are affected by their caregiver functions, it is necessary to review potential cognitive, physical, and psychosocial effects of this type of disability for people with TBI.

Residual Effects of TBI

TBI is distinguished from other forms of brain damage in that an external force acts on the skull causing damage to the brain. Commonly, TBI is categorized both by the means of the injury as well as its severity (Cunningham et al., 1999). The brain can be damaged by both open and closed head injuries. Open head injuries occur when the skull and meninges (a protective layer of tissue and fluid surrounding the brain) is penetrated by an external object (for example, a bullet). With closed head injuries, the meninges is not penetrated (although the skull may be fractured). Closed head injuries are often the result of blunt force to the skull (for example, falls).

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