"This Case Is Closed": Family Caregivers and the Termination of Home Health Care Services for Stroke Patients

Policies promoting home- and community-based services and disease management models implicitly rely on family care, still the bedrock of long-term and chronic care in the United States. The United Hospital Fund studied family caregivers of stroke and brain injury patients when home care cases were o...

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Bibliographic Details
Published in:The Milbank quarterly 2006-01, Vol.84 (2), p.305-331
Main Authors: LEVINE, CAROL, ALBERT, STEVEN M., HOKENSTAD, ALENE, HALPER, DEBORAH E., HART, ANDREA Y., GOULD, DAVID A.
Format: Article
Language:English
Subjects:
Brain
Brain injuries
Caregivers
Caregivers - psychology
Caring
Community health care
Family
Family based
Family caregivers
Female
Health insurance
Health policy
Health services
Home Care Agencies - organization & administration
Home care services
Home Health Care
Hospitals
Humans
Injuries
Interviews as Topic
Long-term care
Male
Medicaid
Medicare
Nursing homes
Organizational Policy
Original
Patient care
Patients
Social support
Social work
Sociology
Sociology of health and medicine
Stroke
Strokes
Transitions
U.S.A
United States
Withholding Treatment
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Summary:Policies promoting home- and community-based services and disease management models implicitly rely on family care, still the bedrock of long-term and chronic care in the United States. The United Hospital Fund studied family caregivers of stroke and brain injury patients when home care cases were opened and closed and found that even with short-term formal services, family caregivers provided three-quarters of the care. Patients' mobility impairments and Medicaid eligibility were the main factors in determining the amount and duration of formal services. Between one-third and one-half of family caregivers reported being inadequately prepared for the case closing. At all stages, family caregivers expressed significant isolation, anxiety, and depression. Therefore, home care agency practice and public policies should provide better education, support, and services for family caregivers.
ISSN:0887-378X
1468-0009
DOI:10.1111/j.1468-0009.2006.00449.x