title: "This case is closed": family caregivers and the termination of home health care services for stroke patients.
abstract: 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.
authors.affiliation: Families and Health Care Project, United Hospital Fund, New York, NY 10118, USA. clevine@uhfnyc.org
authors.forename: Carol
authors.initials: C
authors.lastname: Levine
authors.forename: Steven M
authors.initials: SM
authors.lastname: Albert
authors.forename: Alene
authors.initials: A
authors.lastname: Hokenstad
authors.forename: Deborah E
authors.initials: DE
authors.lastname: Halper
authors.forename: Andrea Y
authors.initials: AY
authors.lastname: Hart
authors.forename: David A
authors.initials: DA
authors.lastname: Gould
mesh_terms: D017028:Caregivers / Q000523:psychology*; D005260:Female; D018574:Home Care Agencies / Q000458:organization & administration*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D016134:Organizational Policy; D020521:Stroke; D014481:United States; D028761:Withholding Treatment