Survey of Caregivers in New York Reports Lack of Essential Training and Support
Approximately one million people in New York City are family caregivers, and most have received little or no training from health care professionals to provide this demanding and often complex care.
These are among the findings of a recent random telephone survey of New York City caregivers, representative of the city's overall population, which was funded by the United Hospital Fund and the Visiting Nurse Service (VNS) of New York. In July, the Fund, in partnership with VNS, published the findings in a special report, A Survey of Family Caregivers in New York City: Findings and Implications for the Health Care System.
The survey found that nearly 60 percent of caregivers reported that they received no training from health care professionals for essential care responsibilities, such as bathing, feeding, or moving a patient from bed to a chair. While these tasks may appear simple, they can be extremely difficult to perform when a patient is ill or disabled. Special techniques must be used to move patients, for instance, to avoid injury to both the caregiver and the patient-techniques that many professionals learn as a routine part of their training.
Additionally, family caregivers reported disturbing gaps regarding instruction for medical tasks. For example:
- 38 percent of caregivers reported having received no training on how to properly change bandages and dressing.
- Almost a fifth was given no formal instruction on how to operate essential medical equipment; and
- 16 percent were not instructed on how to manage a patient's prescription medication schedule.
"We've observed for some time that many family caregivers don't receive much training and support," said Carol Levine, director of the Families and Health Care Project and lead author of the report at the Fund. "The findings of our focus groups of family caregivers, published in 1998 in Rough Crossings: Family Caregivers' Odysseys through the Health Care System, gave us anecdotal evidence to support this observation. Now these survey data confirm what we've hypothesized all along."
Hospitalization: A Time for Intervention
Not surprisingly, the study found that a care recipient's hospital stay triggers more intense, complex, and time-consuming care responsibilities for caregivers after discharge. For instance, compared to caregivers whose family members had not been hospitalized in the past year, those caring for a patient who had been hospitalized were about twice as likely to bathe a care recipient or manage incontinence, and about three times more likely to help with dressing, feeding, getting in and out of bed, and walking across the room. The report's authors suggest that, for health care professionals, hospitalization and the period after discharge are crucial times to educate caregivers and put in place ongoing support and coordinated services.
"Hospitals aren't the only institutions that should be working to better prepare and support family caregivers after discharge," said Carol Raphael, president and CEO of VNS. "Home care agencies need to step up efforts to train caregivers at these times so they can better manage when home care workers aren't around."
Going It Alone
Most respondents of the survey-85 percent-had not arranged for hired help in the home, such as nurses, physical therapists, or home health aides. The reasons ranged from their own or the care recipient's choice, lack of financial resources, or lack of trust. For the 15 percent who hired or managed help, however, more than two-thirds worried about neglect or mistreatment of their loved one, even though most rated the quality of care as good or excellent.
Vulnerable and "Heavy-Duty" Caregivers
The report calls attention to two groups-vulnerable and "heavy-duty" caregivers-for whom caregiving poses the greatest risk for illness and hospitalization. Vulnerable caregivers were defined, in part, as those who already have serious health problems. One in five New York City caregivers was classified as vulnerable, and almost 60 percent of these caregivers had been caring for someone for more than five years.
"Heavy-duty" caregivers were defined as those who performed the greatest and most intense amount of care. Almost half of all New York City caregivers fell into this category, and they were more than two-and-a-half times more likely to report that their health had suffered as a result of caregiving.
While the report calls for health care professionals to better support all caregivers, it suggests that the health care system make directing resources toward vulnerable and "heavy-duty" caregivers the highest priority.
Recommendations for Change
Based on findings from the survey, the report's authors recommend that hospitals, medical professionals, and home care agencies recognize, anticipate, and put services in place to meet the reality of increased burden for families after their loved ones are discharged from the hospital. This includes the provision of caregiver education, adequate home health care, and emotional support for the often trying experience of caregiving. The report also suggests that insurance companies, government payers such as Medicaid and Medicare, and managed care companies recognize the importance of educating and supporting caregivers and adequately reimburse this training and support.
With regard to caregivers' and patients' widespread worry about mistreatment and neglect by home health care workers, the report recommends that home care agencies recognize that this problem exists and work to build trust among caregivers. Finally, the report asks health care professionals to call increased attention to the special needs of caregivers who shoulder the greatest burdens.
The New York City survey was an adjunct to a national survey of family caregivers conducted by the Harvard School of Public Health, the National Opinion Research Center at the University of Chicago, and the Henry J. Kaiser Family Foundation.
Source: Blueprint, Fall 2000, published by United Hospital Fund. Reprinted with permission.
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