Because of improved management, many more survivors of acute stroke are discharged and sent home. These patients may be severely disabled and often are cared for by family members who are poorly prepared for or supported in their task. Training of caregivers in essential skills is believed to reduce the burden of care and contribute to improved patient outcomes, but this belief has not been evaluated systematically. Kalra and colleagues studied the impact of caregiver training on patient outcomes and economic aspects of stroke care in more than 250 English patients.
They recruited patients from a stroke rehabilitation unit. All patients had been independent in activities of daily living before the stroke but were expected to require a caretaker’s supervision or assistance in such activities when they returned home. Patients were neurologically and medically stable on entry to the study. Baseline assessments included the Barthel index and other standardized instruments to assess function and quality of life. On entry to the study, caregivers also were assessed for demographic details and health condition, as well as quality of life and functional status.
The patients were assigned randomly to receive conventional care or conventional care plus caregiver training. Conventional care included information on stroke management and outcomes, involvement in setting rehabilitation goals, encouragement to attend nursing and therapy activities to learn basic skills, and advice about voluntary and community services.
In addition to these services, the caregivers in the intervention group received instructions on the management and prevention of common stroke-related problems, plus active training in lifting and handling techniques, transfers and mobility assistance, management of incontinence, assistance with activities of daily living, and communication skills. The training for each caregiver was individualized to the needs of the patient. The training was provided in up to five sessions, each lasting 30 to 45 minutes, plus a follow-up session at home. Patients and caregivers were assessed (independently, if possible) three and 12 months after the onset of stroke. The outcomes measured included death or institutionalization; Barthel index; depression, anxiety, and caregiver burden scales; and indexes of physical and social function and quality of life.
Data were available on 267 patients and their caregivers. In two thirds of cases, the spouse was the principal caregiver, and 95 percent of patients received additional family support. The conventional care and intervention groups were similar in all major respects on entry to the study and had median Barthel scores consistent with moderate disability. Rates of mortality and institutionalization and measures of functional activity were not significantly different in the conventional care and intervention groups.
At three and 12 months, patients whose caregivers had received training reported significantly improved quality of life, anxiety, and depression scores. For caregivers, training had a significant effect on burden of care, quality of life, and depression and anxiety scores. These benefits were independent of age, severity of stroke, disability, and availability of other support. Overall, 58 percent of caregivers who received training were satisfied with rehabilitation compared with 45 percent of those in the conventional care group. The health care costs for patients with trained caregivers were significantly lower ($18,087 compared with $24,619), mainly because of reduced hospital costs. A trend toward lower costs of respite and other non-hospital care also was noted in the intervention group.
The authors conclude that caregiver training reduces the burdens and improves the quality of life for patients and caregivers without any adverse effect on patient outcomes. The families studied were predominantly middle class and highly motivated. The researchers call for further studies to establish the effectiveness of caregiver training in other patient populations following stroke.