Maryam Navaie-Waliser, Dr.P.H.[05/10/99 - 04/29/05], Principal Investigator
Penny Hollander Feldman, Ph.D., Co-Principal Investigator
Aubrey Spriggs, M.A.[03/20/00 - 07/27/05], Research Analyst

Purpose: To determine:

1. how informal and formal care affect the physical and psychological recovery of adult home care recipients with several common home health admission conditions,
2. whether there is a relationship between the use of informal and formal care, and
3. how the various components of informal and formal care interact with each other.

The study was conducted in three phases over a three-year period. Phase I prospectively identified and recruited an estimated sample of 819 adult home health recipients with two of three tracer conditions (congestive heart failure, joint replacements, or surgical wounds). Additional activities during this phase included survey design, instrument reliability and validity testing, and pilot testing. Phase II involved primary data collection from four main sources including VNSNY's clinical and administrative databases, in-home and telephone interviews with home health recipients, and electronic mail surveys administered to formal caregivers (nurses or therapists). Phase III concentrated on the application of various statistical methodologies to conduct data analysis and interpretation. Other activities during this phase included manuscript preparation and dissemination of findings to the health services community at large.

Findings: Interactions between Informal and Formal Home Health Caregivers: The Disconnect Between Providers In Patient Care Systems: Most care recipients (79%) had a primary family caregiver at entry into care. Family caregivers were primarily women (72%), white (46%) or black (35%), married (56%), employed (49%), and well-educated (67%). Informal caregivers had help from nurses (92%), therapists (79%) or aides (52%), with 81% receiving help from 2 or more formal home health caregivers. Formal caregivers spent most time on physical assessments (45%), plan of care development (16%), wound care (16%), physical therapy (14%), and medication assistance (9%). Informal caregivers spent about 24 hours/week providing assistance with ADLs (28% to 51%), IADLs (16% to 87%), nutrition (54%), polypharmacy (50%), stress management (45%), therapeutic exercises (44%), and medical equipment use (26%). Little interaction occurred between informal and formal caregivers, with nearly 50% having no contact. Between 80% to 90% of informal caregivers received little to no training with caregiving tasks, 38% reported low/moderate levels of confidence in care provision ability, 30% were depressed, 40% had high levels of caregiving strain, and 30% were in poor health. A disconnect between informal and formal caregivers was observed, specifically in communication and care coordination.

Perceptions of Caregiving: Discord Between Home Health Recipients and Primary Informal Caregivers: The majority of home health recipients and primary informal caregivers were women, racial/ethnic minorities and married. Average age for home health recipients was 69 years (SD=7) and 57 years (SD=15) for informal caregivers. Most home health recipients lived either with their informal caregivers (43%) or alone (34%). Spouses (37%) and sons/daughters (32%) were most often identified as primary informal caregivers. Although little disagreement was found in perceptions of formal care provision between home health recipients and primary informal caregivers, there was significant disagreement in informal care provision (14% to 47%). Compared to home health recipients, informal caregivers were more likely to report providing a broader array and intensity of care. The greatest levels of discord between the two groups was evident in the provision of psychosocial care including stress management (47%), illness fact gathering (38%), and giving advice (30%); health behavior management including nutrition (46%), exercise (39%), and self-care (30%); and ADLs/IADLs including ambulation (38%) and financial management (32%). The effects of caregiving perception disparities have the potential to impact caregiver/care recipient relations, burden and health outcomes. Moreover, it points to important methodological considerations in data collection.

Sponsor: The Jacob and Valeria Langeloth Foundation