Sponsors. National Institute on Aging, National Institute for Nursing Research, and Northwest Region of Kaiser Permanente.
Purpose. The Family Based Care Study is designed to increase PReparedness, Enrichment, and Predictability (PREP) of family care for frail elders and their caregivers.
Description. The PREP Family Based Care Study for Frail Older Persons is a two-group randomized controlled trial designed to provide frail older persons and their family members with a range of services chosen by the family unit during a 12-month intervention period. Frail older persons who are members of the Northwest Region of Kaiser Permanente and who meet Medicare criteria for skilled home care are recruited into the study based on a physician's referral to home health care. A screening form is completed for each potential caregiving unit (both caregiver and recipient) to determine whether the client and family caregiver are eligible to be in the study. Caregivers must help with at least one activity of daily living or two instrumental activities of daily living. Eligible study participants (i.e., care recipients and caregivers) are randomly assigned to either the PREP intervention or the standard home health benefit provided at Kaiser Permanente's Northwest Regional medical offices. Approximately 240 family units, including at least 40 African-American families and at least 40 low-income white families, are being followed.
Each family unit assigned to the intervention self-administers a systematic assessment, which includes measures of family and caregiver health and well-being. A nurse reviews the results with the caregiver and identifies areas where either the care recipient or caregiver (or both) scored above or below average. The family then prioritizes its needs and decides what types of services and social supports it would like to receive. If the family decides to select caregiver health supports as part of its service package, then an in-depth health assessment is conducted to determine the types of caregiving services needed. PREP services must be agreed to by the family before any services are initiated.
PREP nurses deliver the services with input and guidance from an interdisciplinary team of experts from Kaiser Permanente's health care system. Both in-person and telephone support services are provided for a 12-month period, with the frequency determined by each family unit. Comparison group subjects receive the standard home care benefit through the Medicare HMO benefit at Kaiser Permanente's Northwest Regional medical offices.
The investigators are using three research measures: the Family Care Inventory, the Quality of Family Care Scale, and the Family Health Diary, and three data sources: the Kaiser Permanente Northwest Region's Home Health automated clinical information system, the Kaiser Permanente Northwest Region's automated data systems, and the Family Expense Calendar.
Data are being collected at 5 points in time (baseline, 5 months, 10 months, 15 months, and 20 months after the receipt of the intervention). Analyses (including regression, survival analysis, and repeated measures ANOVA) are planned to determine:
- whether, compared to standard home health benefits, PREP have a significant effect on family care variables (e.g., caregiver skill, caregiver role strain, health status of caregiver and care recipient, etc);
- whether the effectiveness of PREP varies by race and income; and
- whether any effects of PREP on family care variables and health continue after the intervention is withdrawn (after 12 months).
The study will also address two secondary aims related to measuring the use and cost of formal and informal health care services for care recipients in PREP compared to standard home health care.
Results to Date. Data collection is not finished. The study, currently in its fourth year, will continue for one more year, ending in August 2004. Results will be available within the next 12 to 16 months.
Pat Archbold, Ph.D.
School of Nursing
Oregon Health Sciences University
3455 South West U.S. Veteran's Road
Mail Code SN 5N
Portland, OR 97239-2941
Phone: (503) 494-3840
Fax: (503) 494-4456