Adult Sibling Caregiving for Persons with Traumatic Brain Injury: Predictors of Affective and Instrumental Support
Notice bibliographique
Résumé
The sibling bond is unique among family relationships (Pruchno, Patrick, & Burant, 1996; Seltzer, 1989). Sibling relationships are ascribed and not subject to individual choice. With the exception of adoption, siblings automatically share common genetic, cultural, and environmental characteristics. Because sibling relationships originate from birth and continue until death, and may symbolically persist even after the death of one of the siblings, the sibling relationship can be longer than any other type of relationship. Families of persons with traumatic brain injury (TBI) Within families of persons with TBI, adult siblings often maintain a committed and supportive relationship with their injured brothers and sisters. For example, Gill and Wells (2000) surveyed the experiences of 8 adolescent and adult siblings (with an average age of 21 years) of persons with TBI in Ontario, Canada. Gill and Wells found the lives of the non-injured siblings were forever different as they were prepared to do whatever it took to maintain wellness in the family by meeting family responsibilities presented by their injured siblings' care needs. Parents, spouses/partners, children, and extended family also perform the caregiver role. Family caregiving is necessitated by the lack of public attention and service dollars available for community rehabilitation of persons with TBI. Kolakowsky-Hayner, Miner, and Kreutzer (2001) noted that the bulk of rehabilitation programming and funding support is primarily available during inpatient and acute-care rehabilitation. The care that families provide can be extensive including assistance with activities of daily living, advocacy, service coordination, medication monitoring, and cognitive rehabilitation (Degeneffe, 2001), as this disability can result in a variety of life-long cognitive, physical, and psychosocial impairments (National Institutes of Health [NIH], 1999). Caregiving for persons with TBI can be especially challenging for families due to the necessity of responding to common post-TBI challenges such as inappropriate sexual expression (Sachs, 1991), behavioral instability (Cunningham, Chan, Jones, Kamnetz, & Stoll, 2005), and chronic alcohol and drug abuse (Kreutzer, Witol, & Marwitz, 1996). Research commonly finds that family caregivers face elevated levels of stress and burden that typically do not decrease over time (Douglas & Spellacy, 1996; Kreutzer, Marwitz, & Kepler, 1992). This finding separates TBI caregiving from other areas of family caregiving, where stress and burden can actually decrease with time, such as for aging parents of people with mental retardation (Greenberg, Seltzer, & Greenley, 1993). Planning for the future is one of the many stressors families of persons with TBI encounter. families struggle with meeting the care needs of their injured family members without adequate resources, they wonder who will assume future caregiving responsibilities once parents, the typical primary family caregivers, are no longer able to perform this role. Orsillo, McCaffrey, and Fischer (1993) noted that siblings often assume they will face increased future caregiving responsibilities. It is common for siblings to recognize this possibility and experience feelings of concern. For example, Joseph Maurer (1991), a brother of an individual with a TBI stated, As his brother, and the one who perhaps understands him best of all, I begin, delicately, to shoulder the responsibility for Ed's later years--and all of the financial, legal, and medical details attached to that stewardship. It is a role siblings (and their parents) could use considerable help in addressing (pp. 31-32). Adult Siblings as Caregivers A number of studies (Harland & Cuskelly, 2000; Pruchno et al., 1996) of persons with other chronic conditions find that siblings assume future caregiving responsibilities that extend throughout the lifespan. …
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