Academic journal article The Journal of Rehabilitation

Planning for an Uncertain Future: Sibling and Parent Perspectives on Future Caregiving for Persons with Acquired Brain Injury

Academic journal article The Journal of Rehabilitation

Planning for an Uncertain Future: Sibling and Parent Perspectives on Future Caregiving for Persons with Acquired Brain Injury

Article excerpt

Acquired brain injury (ABI) is a disability that occurs with no warning or expectation. It is a disability that affects all segments of society, ages, geographical regions, and ethnicities. ABI includes all forms of brain injury, including traumatic brain injury (TBI), strokes, and hypoxic brain injury (Brain Injury Association of America [BIA], 2012a). The Centers for Disease Control and Prevention estimate approximately 1.7 million TBIs occur each year in the United States (Faul, Xu, Wald, & Coronado, 2010), mostly due to mild TBI and concussions, with another 795,000 injured through non-traumatic causes (Roger et al., 2012).

Given the pervasiveness of ABI, it is a disability of particular interest to rehabilitation counselors. With employment in the State/Federal Vocational Rehabilitation System, the U.S. Department of Veterans Affairs (VA), community-based provider agencies, and college/university student disability support offices, rehabilitation counselors come into daily contact with persons with ABI and their families. For example, as of January 14, 2014, from 2000 to 2013, a total of 297,911 military personnel incurred TBI from deployment and non-deployment causes (Fischer, 2014). Many of these injured persons will require long-term rehabilitation counseling support from the VA and other veteran-focused rehabilitation agencies. Rehabilitation counselors in these and other settings see firsthand the daily stresses and struggles families encounter in attempting to successfully respond to their new post-injury lives and needs for support.

Family Response to ABI

Due to its unexpected nature, injured persons and their families are typically not prepared to meet the many physical, cognitive, and psychosocial changes that can occur post-injury (Cunningham, Chan, Jones, Kamnetz, & Stoll, 2005). The sum total of these consequences often results in decreased productivity and ability to live and work independently. With TBI, for example, healthcare expenditures and lost productively result in approximately $76.2 billion in costs annually (BIA, 2012b).

Compared to other chronic disabilities like schizophrenia, intellectual disability, and Alzheimer's Disease, the families of persons with AB1 are thrust immediately into a new reality of managing the care needs of a spouse/partner, sibling, child, or parent with much less time to adjust or prepare. Following inpatient hospitalization, many persons with ABI return home and are forced to rely on family to meet their basic support needs, often due to the lack of available ABI long-term care programs (Degeneffe & Tucker, 2014). Families provide a broad range of affective and instrumental caregiving supports such as advocacy, service coordination, medication monitoring, and daily living needs assistance (e.g., bathing) (Degeneffe, 2001; Degeneffe & Burcham, 2008). It is a responsibility that can result in role changes and the development of chronic stressors (Degeneffe, 2001). For example, mothers and fathers can be faced with an extended parenthood during a time of expected retirement and increased leisure. Spouses and partners may need to redefine the nature of their relationship to the injured family member, especially in the face of changes with personality and sexual behavior (Degeneffe et al., 2008).

The Sibling Relationship

Siblings hold a unique place among the family relationships impacted by ABI, given their special place in the family system. Sibling relationships are characterized by close affective ties, which remain consistent from childhood to old age. It is a relationship typically longer than any other family relationship, and characterized by equalitarian relationships, nurturance, and continuity (Orsmond & Seltzer, 2007). Specific to ABI, siblings often face deep emotional and even existential changes extending from childhood (Bursnall, 2003) to the adult years (Degeneffe & Olney, 2010). …

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