The Brain Injury Association of America (2007) estimates that someone in the United States sustains a traumatic brain injury (TBI) every 23 seconds. While many less severe injuries go undiagnosed and untreated, 17% of those injured suffer serious brain trauma that results in a loss of consciousness, neurological deficits, and long-term disability (Senelick & Dougherty, 2001). According to the National Center for Injury Prevention and Control (2006), there are more than 5.3 million people living in the United Sates who require long-term or lifelong help due to a TBI.
Although both young adults and the elderly are at high risk of sustaining TBIs (Urbach & Culbert, 1991), it is a major cause of disability in Americans younger than age 35 (Duffy, 2005). In fact, TBI has become the most common neurological condition among people under the age of 50 (Butera-Prinzi & Perlesz, 2004).
Considerable research has been done on the well-being of those who sustain brain injuries and their primary caregivers, yet professionals know relatively little about the impact of parental brain injuries on children (Butera-Prinzi & Perlesz, 2004; Urbach & Culbert, 1991). Considering the frequency of TBI, particularly within the population most likely to be raising children (25-50), a large number of children will grow up with parents who have sustained a TBI (Urbach & Culbert, 1991). Furthermore, with the current status of wars in Iraq and Afghanistan, many more children are likely to face parents with brain injuries returning from military conflict.
Research indicates that TBI can cause permanent changes in both the individual that sustains the TBI and his or her entire family system (Gan & Schuller, 2002; Kreutzer et al., 2009). Rolland (1999) describes the difficulty of the situation for family members of the injured patient:
The family and each member face the formidable challenge of focusing simultaneously on the present and the future, on mastering the practical and emotional tasks of the immediate situation while charting a course for dealing with the complexities and uncertainties of their problem in an unknown future (p. 249).
Hence, a TBI disrupts the entire family unit and affects each member of the family in profound ways (Dausch & Saliman, 2009; Gan & Schuller, 2002; Tyerman & Booth, 2001). When a parent sustains a TBI, a "ripple effect" occurs (Gan & Schuller, 2002). As family members interact with each other and affect the general family environment, one family member's difficulties can result in challenges for everyone in the family system (Boschen et al., 2007; Kreutzer et al., 2009).
Long-term distress in family members of people with TBI has been well-documented in the literature (Boschen et al., 2007; Gan & Schuller, 2002; Kreutzer et al., 2007; Perlesz, Kinsella, & Crowe, 1999; Ponsford & Schonberger, 2010; Tyerman & Booth, 2001; Winstanley, Simpson, Tate, & Myles, 2006). In fact, some research (Brooks, 1991) indicates that family members are often more distressed than their loved one with a TBI.
Various factors influence the level of distress experienced by family members of people with TBI. In general, individuals with more severe behavioral and cognitive changes after a TBI have higher levels of unhealthy family functioning after a TBI (Anderson, Parmenter, & Mok, 2002). Residual deficits, such as the level of community participation after a TBI, rather than the initial severity of TBI, are also importantly associated with distress in family members (Winstanley et al., 2006). Personal characteristics, coping strategies, individual perceptions of the situation, and the social networks of family members are all factors that influence each family member's level of distress (Blake, 2008). Interestingly, the amount of time elapsed since injury does not significantly affect the level of distress displayed by family members (Gan & Schuller, 2002; Gervasio & Kreutzer, 1997), with some research indicating that family burden and reduced family functioning persists as long as 15 years post-injury (Thomsen, 1984).
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