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In a new study that followed family caregivers of stroke and brain injury patients through their initial experiences with formal home care services, termination of services, and for an average of nine months thereafter, researchers have determined that unpaid family caregivers provide substantial amounts of care but receive inadequate support from healthcare providers.
Stroke patients discharged from hospitals, typically a week after the incident, require an enormous amount of care at home. Family caregivers shoulder three-quarters of the care responsibilities even when agency services are being delivered. And when these services end, typically after six or seven weeks, it is family members who must take over or seek other sources of assistance.
Between one-third and one-half of family caregivers reported being inadequately prepared for agency home care services to end. And, at all stages, family caregivers experienced significant isolation, anxiety and depression.
“This study demonstrates the gap between the needs of caregivers of patients with chronic conditions and the services that are provided under a system based on short-term, acute care rehabilitation,” said Carol Levine, lead researcher of the study.
Published last June in The Milbank Quarterly, the study enrolled and periodically interviewed a sample of 99 New York City family caregivers taking care of stroke or brain injury patients following their discharge from a hospital or short-term nursing home stay.
“Regardless of their insurance status, family caregivers generally increased their hours of care when the agency case was closed,” said Steven M. Albert, Ph.D., a co-author of the study. “At nine months they were providing nearly the same amount of care needed when the case was opened. This suggests both a period of instability at the time of the case closing and an ongoing need for assistance for a very impaired population.”
Other highlights of the study include:
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Almost three-quarters of the family caregivers were women; about half were spouses; their mean age was 57.
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Forty-one percent of the caregivers were working full- or part-time, and 19 percent had stopped working because of their caregiving responsibilities.
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Family caregivers provided, on average, 32 hours of care a week while they were receiving formal home health care services, which provided, on average, 11 hours a week of support.
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Social workers, who may have been able to provide assistance to families, were used infrequently and were mainly brought in when there was a problem closing the case.
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Speech therapy was seldom provided, even though stroke patients often have difficulty recovering language skills.
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The patient’s type of insurance coverage did influence care and case closings. While their cases were open, Medicaid patients were less likely to receive occupational therapy services. Patients with Medicaid, who were older and more likely to be from a minority group, had longer lengths of service than did those with Medicare or private insurance.
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Nearly 40 percent of family caregivers reported that they learned about the case closing (i.e., termination of formal home care services) only when a therapist, nurse, or home care aide informed them.
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Family caregivers reported that they did not understand how the level of home care services was determined, who was paying for what, which agencies supplied the different kinds of workers, and what they should expect from each. None of the caregivers reported a discharge process that addressed their ongoing needs for further training and provided referrals to other supportive services.
For more information about the study, contact Carol Levine at United Hospital Fund, (212) 494-0755.
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