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Article Excerpt
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. As 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. While research on families of persons with TBI has largely ignored adult siblings as caregivers, research on families of persons with developmental disabilities or mental illness has examined the specific conditions in which adult siblings become caregivers, the types of care they give, and the factors that predict the type of care they provide. It should be noted that the bulk of this research was conducted in the 1990s and there is a lack of more recent investigations. Examples of these studies are presented below.
Krauss, Seltzer, Gordon, and Friedman (1996) determined that among 140 adult siblings of persons with mental retardation, 36% planned to live with their brothers and sisters at some future point. A predictor of these plans was poor health of the mother caregiver. Also, Horwitz (1993) interviewed 108 adult siblings of persons with severe mental illness who were receiving services from a community-based agency. Adult siblings gave more functional help (i.e., emotional support and assistance with household tasks, shopping, crises, finances, rides, and gifts) and were more likely to maintain an emotional connection with their brothers and sisters when both parents were deceased.
Furthermore, families of persons with disabilities sometimes expect that siblings will be future primary caregivers. For instance, Griffiths and Unger (1994) surveyed 41 adult sibling-parent dyads of families of persons with mental retardation. Griffiths and Unger found that 22% of parents expected adult siblings would be future caregivers. Also, Pruchno et al. (1996) conducted phone and face-to-face interviews with 351 mothers of adult children with schizophrenia and 487 mothers of adult children with a developmental disability. A total of 62.5% of all the mothers felt "somewhat likely" or "very likely " that once they were no longer able to continue as the primary caregiver, one of their adult children would assume caregiving responsibilities.
More recently Smith, Greenberg, and Seltzer (2007) found that adult siblings themselves sometimes hold expectations about future caregiving. They surveyed a sample of 137 adult siblings of persons with schizophrenia on their expectations of performing future caregiving roles. In many areas, a majority of these siblings planned to serve as caregivers to their brothers and sisters with mental illness. Areas where more than half (the percentages are listed in parentheses) of the sample expected to give care included: (a) helping during illness (83.3%), (b) managing money (66.4%), (c) helping with transportation (56.9%), (d) keeping appointments (54.3%), (e) listening to problems and provide advice (92.7%), (d) including in family celebrations/holidays (92.7%), (e) visiting regularly (86.9%), (f) including in social event (80.3%), and (g) taking to a restaurant or movie (75.9%).
With regard to the types of care adult siblings give, studies find that siblings provide both affective and instrumental social supports. Affective support encompasses emotionally-based care such as companionship, encouragement, praise, and intimacy. Instrumental support consists of assistance in performing functional tasks such as completing chores, running errands, handling finances and preparing food. Research finds that adult siblings often provide greater amounts of affective than instrumental care to their brothers and sisters with disabilities (Pruchno et al., 1996; Seltzer, Begun, Seltzer, & Krauss, 1991).
Finally, in an effort to understand what type of adult sibling of a brother or sister with a disability is most likely to give care, researchers (Horwitz, 1993; Krauss et al., 1996; Orsmond & Seltzer, 2000; Pruchno et...
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