Using a life-course perspective and role theory, including Pearlin's models of primary and secondary stressors and concepts of role- appropriateness, time appropriateness, and role overload, this project examines patterns of family care over time for older persons discharged from hospital, man of whom are very old. (Many family caregivers in the study are also very old. The first 3 specific aims are: informal and formal care; 2) examine the cumulative effects of informal care on patient outcomes (entering or leaving nursing homes, mortality, and functional status); (3) examine the effects of informal care on the caregiver (objective burden, subjective burden, ceasing role as primary caregiver). These analyses use already-collected longitudinal data on a sample of 2611 persons discharged from 52 hospitals in 3 cities with diagnoses of hip fracture, stroke, hip replacement, congestive heart failure, and chronic obstructive pulmonary disease, including a patient interview before hospital discharge, and at 6 weeks, 6 months, and 1-year after discharge; including a patient interview at the post-discharge intervals; hospital chart abstracting for severity of illness; and Medicare utilization data for 5 years after the hospitalization. Also used is a rich data set with detailed qualitative information that describe caregiver motivations, back-up support systems, and detail positive and negative effects for a subset of 307 family caregivers of persons with hip fractures and strokes as their discharge diagnosis. Taken together, they permit exploration of the reciprocal relationships among informal and formal caregiving and effects on caregiver and care receiver over time.
Aim 4 collects 5-year follow-up data from this subset of caregivers and Aim 5 analyzes long-range effects on the patient and on the caregiver (including subsequent caregiving activities undertaken and plans for their own care). Patient characteristics (e.g. age, cognitive status), caregiver characteristics (e.g. age, duration of caregiving, labor force participation) and caregiving characteristics (e.g. intensity and type of informal and formal care at earlier time periods) are incorporated into the models for Aims 1, 2, 3, and 5. The 5-year follow-up for the subsample explores the stability of caregiving roles and how they move within families; the relationships between earlier caregiving and later caregiving or care receiving within one's social network; and the experiences of very old family caregivers, compared to other caregivers.
