| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
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RESEARCH AND PRACTICE |
Maryam Navaie-Waliser and Penny H. Feldman are with the Center for Home Care Policy and Research, Visiting Nurse Service of New York, NY. David A. Gould, Carol Levine, and Alexis N. Kuerbis are with the United Hospital Fund, New York, NY. Karen Donelan is with the Department of Health Policy and Management, Harvard School of Public Health, Boston, Mass.
Correspondence: Requests for reprints should be sent to Maryam Navaie-Waliser, DrPH, Center for Home Care Policy and Research, Visiting Nurse Service of New York, 5 Penn Plaza, 11th Floor, New York, NY 10001 (e-mail: maryam.navaie{at}vnsny.org).
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Objectives. This study examined the characteristics, activities, and challenges of high-risk informal caregivers.
Methods. Telephone interviews were conducted with a nationally representative cross-section of 1002 informal caregivers. Vulnerable caregivers with poor health or a serious health condition were compared with nonvulnerable caregivers.
Results. Thirty-six percent of caregivers were vulnerable. Compared with nonvulnerable caregivers, vulnerable caregivers were more likely to have difficulty providing care, to provide higher-intensity care, to report that their physical health had suffered since becoming a caregiver, to be aged 65 years or older, to be married, and to have less than 12 years of education.
Conclusions. Reliance on informal caregivers without considering the caregiver's ability to provide care can create a stressful and potentially unsafe environment for the caregiver and the care recipient.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Although informal care can positively affect the physical and psychological well-being of care recipients, its provision often comes at a personal cost to the caregiver. Past studies have shown that caregiving can adversely influence the caregiver's psychological health through added strain,5 stress,6,7 and depression.8 Moreover, family caregivers are less likely to engage in preventive health behaviors9–11 and may even be at increased risk for mortality.12 However, these effects are not the same for all caregivers.6,12–14 For example, it has been suggested that certain factors such as race, advanced age, employment status, and inadequate social support increase the caregiver's risk for poor health outcomes.7,15–19 Therefore, it appears that the added burden of caregiving may have a more severe impact on the well-being of particular subgroups of caregivers who have predisposing characteristics that place them at "higher risk" for adverse health outcomes.
Past studies have rarely focused on high-risk caregivers per se or the nature of their caregiving tasks. The purpose of this study was to examine the characteristics, activities, and challenges of high-risk informal caregivers.
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METHODS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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After initial screening, 83% (n = 1002) of individuals who met the eligibility criteria gave verbal consent to participate in the study. For the purposes of this study, informal caregivers who reported being in fair to poor health or having a serious health condition (vulnerable caregivers) were compared with caregivers without these characteristics (nonvulnerable caregivers).
Data Collection
Trained interviewers collected data on a wide range of information, including the following: (1) sociodemographic characteristics (e.g., age, sex, race), (2) characteristics of relationship between caregiver and care recipient (e.g., family or nonfamily, whether or not primary caregiver, living arrangement), (3) type of care provided (e.g., activities of daily living and instrumental activities of daily living), (4) hours per week of care provided, (5) duration of care, (6) caregiving intensity (we used the Level of Care Index,16 a composite variable that combines the number of activities of daily living and instrumental activities of daily living performed with the hours of care provided per week to generate a score on a 5-point scale in which 1 = least intensive and 5 = most intensive), (7) help received from formal care providers (i.e., paid professionals or nonprofessionals), (8) perceived difficulty of providing care (we used a scale ranging from 1 = very difficult to 4 = not at all difficult), (9) unmet needs in providing care, (10) effect of caregiving on the caregiver's health (we used a scale ranging from 1 = strongly agree to 5 = strongly disagree), and (11) the caregiver's and care recipient's health status.
Statistical Analysis
Descriptive statistical analyses, bivariate analyses, and multivariate regression analyses were performed. We used logistic regression to model vulnerable caregivers (0 = no, 1 = yes) as a function of unmet needs in providing care (0 = no, 1 = yes), difficulty providing care (0 = not at all or not very, 1 = somewhat or very), caregiving intensity (0 = lower intensity, score of 1–3, 1 = higher intensity, score of 4–5), caregiver reporting that own physical health has suffered since becoming a caregiver (0 = disagrees or strongly disagrees, 1 = agrees or strongly agrees), being a primary caregiver (0 = no, 1 = yes), caregiver's age (0 = younger than 65 years, 1 = 65 years or older), sex (0 = male, 1 = female), marital status (0 = not married, 1 = married), race (0 = White, 1 = non-White), education level (0 = high school graduate or more, 1 = less than high school graduate), employment status (0 = unemployed, 1 = employed), controlling for the care recipient's health (0 = good or excellent, 1 = fair or poor). Crude and adjusted odds ratios, 95% confidence intervals, and P values were computed. All of the analyses were weight adjusted to represent the general population.21–23 Poststratification weight adjustments ranged from 0.05 to 7.76 and were derived by using 3 respondent characteristics (age, sex, and race).20 Marginal distributions were estimated with 1996 population estimates generated by the Bureau of the Census.24
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RESULTS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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). However, vulnerable caregivers were less likely than nonvulnerable caregivers to be employed and to be caring for someone who lived alone.
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). The only notable differences in activities of daily living care provided by the 2 groups were bathing, dressing, and transferring, with vulnerable caregivers more likely than nonvulnerable caregivers to be providing these types of care. In addition, differences in the provision of instrumental activities of daily living revealed that vulnerable caregivers were more likely than nonvulnerable caregivers to make telephone calls on behalf of the care recipient, to manage the care recipient's finances, and to help the care recipient with obtaining assistance from governmental programs (e.g., Medicare, Supplemental Security Income). Moreover, vulnerable caregivers were more likely than nonvulnerable caregivers to provide care for 20 or more hours per week.
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Multivariate Analysis
As shown in Table 3, after the care recipient's health status was controlled for, results from logistic regression analyses revealed that vulnerable caregivers were more likely than nonvulnerable caregivers to have difficulty providing care, to provide higher-intensity care in terms of more hours of care per week in conjunction with a greater number of activities of daily living and instrumental activities of daily living, to believe that their physical health suffered as a result of caregiving, to be aged 65 years or older, to be married, and to have less than 12 years of education. The findings also revealed that vulnerable caregivers were less likely than nonvulnerable caregivers to be employed.
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DISCUSSION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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These findings paint a disturbing picture that warrants the attention of public health policymakers and health care providers. In the US health care system, the major source of paid home health care is Medicare, which limits eligibility to the elderly and to younger people with disabilities. Medicare has strict definitions of ‘homeboundedness,’ medical necessity, and the need for intermittent rather than continuous care. Home health aide services are provided only when there is a need for skilled nursing care. Furthermore, although aide services and help with activities of daily living were once readily available to any Medicare beneficiary whose physician certified that need, recent changes in the Medicare home health payment system provide disincentives for agencies to serve individuals with long-term care needs. Consequently, the availability of Medicare as a dependable supplement to family caregiving has been dramatically reduced. Although state Medicaid programs, which unlike Medicare have legal authority to provide long-term care, could fill the gap created by Medicare cutbacks, most have a strong nursing home bias. Many Medicaid programs are quite actively engaged in "Medicare maximization"—a policy of shifting to Medicare as many home care costs as possible.
Thus, recent changes in the policy environment, combined with continued reductions in hospital and nursing home lengths of stay, suggest that pressures on unpaid caregivers are likely to increase. Reliance on informal caregivers without considering the caregivers' ability to provide care can create a stressful and potentially unsafe environment for the caregiver and the care recipient. These findings signal a need for developing a broader array of accessible, affordable, and innovative services and programs that lend support to family caregivers in their roles. Although arguments in favor of supporting caregivers are many, one large incentive is that caregivers at increased risk for mental and physical health problems are likely to become care recipients themselves, further draining limited resources for conditions that are often preventable.
The results of this study must be viewed in light of certain survey limitations specific to nonsampling error, such as nonresponse bias, coverage bias, item response bias, and question order and context effects. The margin of error for estimates in this survey was 3%. Efforts were taken to minimize sources of errors, including pilot testing the survey instrument with focus groups, devising alternative forms of the screening instrument, training interviewers, and providing extensive supervision during data collection. Moreover, up to 50 attempts were made to contact eligible participants.
This study extends previous research on caregiving in several ways. First, in contrast to past research, which almost always has considered caregivers as 1 population, the present study separates caregivers on the basis of key health attributes that are likely to affect both the caregiver's long-term well-being and his or her ability to provide care. Second, rather than focusing primarily on the psychological burdens of caregiving, the present study examines the content, intensity, and duration of care provided by vulnerable caregivers—aspects of caregiving that could exacerbate existing vulnerabilities over time. Taken together, the results of this study suggest that more than one third of caregivers, who are a vital and increasingly important resource to the health care system, are in the precarious position of providing intense and continuing care to others while suffering from poor health themselves. The importance of addressing the needs of these caregivers should not be underestimated.
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Acknowledgments |
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An earlier version of this paper was presented at the annual meetings of the Association for Health Services Research, Los Angles, Calif, June 2000, and the American Public Health Association, Boston, Mass, November 12–16, 2000.
We thank Dr Timothy Peng for his insightful comments.
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Footnotes |
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Accepted for publication February 23, 2001.
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References |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
