Family Caregivers of Women with Physical Disabilities

Abstract

Cross-sectional, correlational analyses of data from two separate studies were conducted to examine the correlates of adjustment among family caregivers of women with disabilities. Participants included 40 caregivers of women with spinal cord injuries in the first study and 53 caregivers of women with cerebral palsy, traumatic brain injury, and other neuromuscular disabilities in the second study. It was hypothesized that a negative problem-solving style would be associated with greater caregiver distress in both studies, and that caregiver adjustment would be associated with care recipient depression in the second study. As expected, results indicated that a higher negative orientation toward solving problems was associated with caregiver depression and lower well-being. However, in the second study, caregiver characteristics were not associated with care recipient depression. These data indicate that considerable variability exists in caregiver adjustment. Methodological limitations and the implications for research, service, and policy formation are! discussed. KeywordsCaregiver; Women; Disability Family caregivers of women with physical disabilitiesAs health care programs continue to circumscribe their service to persons with chronic, debilitating health conditions, many family members are compelled to assume caregiving roles (Hoffman, Rice, & Sung, 1996). In fact, available data indicate that family caregivers " … constitute the largest group of care providers" in the United States (Parish, Pomeranz-Essley, & Braddock, 2003, p. 174), and as they provide the majority of long-term care in this country, the market value of their activity far exceeds that spent on formal health care and nursing home care (Vitaliano, Young, & Zhang, 2004, p. 13). Yet family caregivers function as de facto healthcare providers without adequate training or appropriate remuneration (Shewchuk & Elliott, 2000): They are expected to operate competently as extensions of health care systems, often performing complex medical and therapeutic tasks, helping a loved one perform and adhere to therapeutic regimens .Caregiving is often associated with many deleterious effects on the caregiver (Donelan, Falik, & DesRoaches, 2001;Vitaliano, Zhang, & Scanlan, 2003). However, this work has been largely Correspondence to: Patricia A. Rivera. NIH Public Access NIH-PA Author ManuscriptNIH-PA Author Manuscript NIH-PA Author Manuscript restricted to studies of care recipients who have degenerative diseases (e.g., Alzheimer's disease, dementias). These experiences are ultimately time-limited, contingent upon the eventual progression of the disease. The stress of these caregiving scenarios is unlike that associated with assisting individuals with permanently and severely disabling conditions, in which the care recipient is impaired but has a considerable life expectancy. To date, little research has addressed the impact of caregiving for people with severe physical disabilities who now have considerable life expectancies, and the research that...

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