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Holli Petersen, Sara Sanders, Caregiving and Traumatic Brain Injury: Coping with Grief and Loss, Health & Social Work, Volume 40, Issue 4, November 2015, Pages 325–328, https://doi.org/10.1093/hsw/hlv063
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According to the Centers for Disease Control and Prevention (CDC), approximately 2.5 million individuals experienced a traumatic brain injury (TBI) in 2010 (CDC, 2010). These injuries are sustained from a wide range of traumatic events, including falls, motor vehicle crashes, sports injuries, and combat blasts. The increased attention to TBI has generated momentum in examining strategies for supporting families, especially caregivers, as TBI changes the fabric of a family system at the moment of the injury. The diagnosis of a TBI affects the entire family system, with research documenting increased depression, anxiety, somatic difficulties, and burden in addition to significant role changes, financial difficulties, increased rates of substance abuse, and other mental health issues in caregivers (Knight, Devereux, & Godfrey, 1998; Kreutzer, Serio, & Bergquist, 1994). Even decades postinjury, caregivers often still manage the behavioral changes associated with TBI (Frosch et al., 1997).
Recovery post-TBI is a powerful experience for caregivers, invoking a lifelong journey of understanding disabilities and impairment while working to accept the changes that have occurred in one’s life. Caregivers embark on a parallel journey of coming to terms with a “new normal,” as the person they once knew is forever changed due to the brain injury. For recovery to progress, survivors and family members alike need the opportunity to learn about how TBI changes a person and family and then engage in a grief process. With TBI, the survivor is physically present; however, psychologically they have changed, specifically in relation to their personality, thinking, memory, and recognition. Psychological absence is confusing, as the relationship that was once shared between individuals appears to be missing (Betz & Thorngren, 2006), thus creating ambiguous loss (Boss, 1999). Boss defined ambiguous loss as that which occurs without closure due to the complicated and, in some cases, uncertain outcomes. The most significant challenge associated with ambiguous loss is that closure is difficult because closure and resolution of the loss do not occur, which is the case of TBI. Dealing with ambiguous loss increases the occurrence of depression, anxiety, and relationship conflicts (Boss, 1999), as people respond to and manage these ambiguous losses in different ways, from those who deny any changes have occurred to those who become entrenched in the agony that the ambiguity can bring. Addressing ambiguous loss is difficult, as families are left with unanswered questions and many uncertainties about recovery, functioning, and degree of assistance needed (Boss, 1999).
