Recent advances in medical treatment protocols have resulted in significant numbers of people into old age with eventually fatal chronic illness and progressive disability. Changes in health policy have meant that the responsibility for much of the care of these individuals has been shifted onto family members. One large and growing category of patients with advanced eventually fatal chronic illness is that of organ system failure, particularly congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD). These individuals have an erratic and uncertain disease course that is characterized by periods of relative stability punctuated by periodic episodes of acute illness, set in the context of progressive slow decline. The experience of family caregivers of individuals with advanced CHF and COPD is likely to differ significantly from that of caregivers of individuals with other types of chronic illness, such as dementia. However, current caregiving research has not focused on caregivers of individuals with advanced CHF and COPD as a discrete group with particular situational needs. The purpose of the proposed study is to explore the various aspects of caregiving for individuals with advanced chronic CHF and COPD in order to understand the impact of caregivers' experience from the caregivers' perspective. The study aims are to identify and describe: 1) the factors that influence caregiver outcomes in caregiving to individuals with advanced chronic CHF and COPD; 2) common caregiving demands related to the distinct qualities and features of the illness trajectory for advanced chronic CHF and COPD, and 3) the areas of need for intervention that will improve the caregivers' experience in caring for individuals with advanced CHF and COPD. Data will be gathered by conducting a series of focus groups with caregivers for individuals with advanced CHF and COPD. Participants will be selected to ensure diversity and will be divided into groups of spouse and non-spouse caregivers for living and deceased individuals. Data analysis will include: 1) a description caregiver perceptions of the features and qualities of the caregiving experience and 2) systematic coding to identify characteristics and trends. The results will be compared to the experience, as documented in the literature, of caregivers of individuals with other chronic illness in order to identify similarities and differences that can inform the development of caregiver interventions specific to advanced chronic CHF and COPD.
