Comparison of advanced chronic illness patient caregiving across the three trajectories: Cancer, organ system failure, and alzheimer’s disease

Background: The cost and responsibility for much of the care of seriously ill, elderly persons living in the community with advanced, eventually fatal, chronic illness has been shifted onto family members. Chronic organ system failure presents a distinct illness trajectory with an erratic and unpredictable course characterized by episodes of acute illness and periods of relative stability set against a background of gradual, progressive disability. Current caregiving research has not yet described the challenges, stresses, and rewards that accompany caregiving for individuals with advanced chronic organ system failure. This project sought to describe the factors that influence caregiver outcomes in caregiving to advanced CHF and COPD patients; common caregiving demands related to the distinct qualities and features of the illness trajectory for advanced CHF and COPD; and the areas of need for intervention that will improve the caregiver's experience in caring for advanced CHF and COPD patients.

Methods: We conducted a series of 12 focus groups (8-10 adults each), 18 years or older, who were currently providing care for a patient with advanced chronic CHF or COPD.  Focus group discussion topics were identified from the literature on cancer and Alzheimer's disease caregiving with added questions regarding specific characteristics of the advanced chronic illness patient trajectory [e.g., the erratic trajectory of the CHF/COPD disease course, patient and caregiver knowledge of prognosis and what to expect, and patient and caregiver interactions with the healthcare system. Initial analysis resulted in a classification system for major topics derived from the material and a second analysis by both researchers determined a final set of themes.

Results: Five major themes were identified: (1) how caregivers describe their experience, (2) prognosis/uncertainty impacts, (3) objective burden (tasks), (4) role conflict/reversal, and (S) subjective burden. Details and implications for future research and intervention policy will be discussed.