Family care giving for patients at life's end: Report from the Cultural Variations Study (CVAS)

Abstract

Objective: To investigate differences between African American and White family caregivers in self-reported health, use of social support and external resources, and emotional and financial strain in the context of their care of a family member with advanced cancer.

Methods: Sixty-nine patient-designated family caregivers of patients with advanced lung or colon cancer interviewed between December 1999 and July 2001.

Results: Most African American and White family caregivers were able to identify someone else who was helping them in the care of their family member. Few caregivers used outside resources (e.g., home-based medical care, meal delivery, pastoral care, outside social support visitor) to assist in the support and care of the patient. At baseline, White caregivers were more likely to agree that caregiving caused work adjustments (ρ = .28, p = .02) and emotional difficulties (ρ = .32, p = .008) and that caregiving had been completely overwhelming (ρ = .19, p = .12) than were African American caregivers. At follow-up, among family caregivers of patients who had died, 44% reported having to quit work to provide personal care for the patient. Twenty-five percent of family caregivers reported using most or all of the family's saving in caring for the patient.

Significance of results: Caregivers of patients at end of life experience substantial emotional and financial difficulties related to caregiving. Family caregiving is a private undertaking with little use of outside resources to mitigate the burden.