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a Center for Home Care Policy and Research, Visiting Nurse Service of New York, NY
b United Hospital Fund, New York, NY
c Department of Health Policy and Management, Harvard School of Public Health, Boston, MA
Correspondence: Maryam Navaie-Waliser, Dr.PH, Senior Research Associate, 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.
Decision Editor: Laurence G. Branch, PhD
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Abstract |
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Key Words: Ethnicity • Race • Home care • Informal care • Religiosity
According to census estimates, over the next 2 decades, the fastest growing sector of the population will be elderly adults (U.S. Census Bureau 1996b
, U.S. Census Bureau 2001; Social Security Administration 2000). This phenomenon is expected to be observed across all races, including the nation's largest racial/ethnic minority groups, Blacks and Hispanics (U.S. Census Bureau 2001). Although population growth varies across states, current demographic trends in New York State appear to concur with national estimates (U.S. Census Bureau 2001). Of the nearly 19 million residents in New York, 13% are 65 years of age or older, 16% are Black, and 15% are of Hispanic ethnicity. The largest proportion of New Yorkers live in New York City, accounting for 42% of all New York residents. New York City also is home to the largest majority of New Yorkers who are 65 years of age or older (38%) and of Black (71%) and Hispanic (75%) racial/ethnic descent (U.S. Census Bureau 2001).
With an aging population, the need for dependent care is likely to increase. As current service-use patterns reveal, informal caregivers (i.e., unpaid family members and friends) bear the overwhelming responsibility for the provision of home care and long-term care services. In light of limited access, availability, and affordability of formal (i.e., paid professional or paraprofessionals) care, informal caregivers will likely continue, or expand, their role as primary caretakers well into the 21st century.
Although past studies have documented the vital role of informal caregivers in care provision, relatively little is known about the experiences and challenges of racial/ethnic minority caregivers (Dilworth-Anderson, Williams, and Cooper 1999). In general, the literature has treated caregivers as a homogenous group, without systematically examining racial/ethnic differences in the caregiving experience. Among the few studies that have compared caregivers of different racial/ethnic backgrounds, the focus primarily has been on documenting the sociodemographic differences between caregivers (Hinrichsen and Ramirez 1992; Wykle and Segal 1991), the kinship between caregivers and care recipients (Penrod, Kane, Kane, and Finch 1995; Tennstedt, McKinlay, and Sullivan 1989), the amount and type of assistance provided by caregivers (Haley, West, Wadley, et al. 1995; Knight, Merril, McCallum, and Fox 2000; National Alliance for Caregiving and American Association for Retired Persons 1997; Navaie-Waliser, Feldman, Gould, et al. in press), and the impact of caregiving on the caregiver's emotional and mental state (Knight et al. 2000; Mui 1992; Farran, Miller, Kaufman, and Davis 1997). A review of these studies reveals significant differences between ethnic minority caregivers and White caregivers. Compared with White caregivers, ethnic minority caregivers tend to be younger, less likely to be married, and have lower income (Knight et al. 2000; Nkongho and Archbold 1995, Nkongho and Archbold 1996); are more likely to provide a greater volume of informal care (Mui 1992; Fredman, Daly and Lazur 1995); are less likely to be depressed (Connel and Gibson 1997; Miller and Snigdha 1999; Farran et al. 1997), stressed (Connel and Gibson 1997; Miller and Snigdha 1999) or feel burdened (Haley et al. 1995; Haley, Roth, Coleton, et al. 1996; Knight et al. 2000; Lawton, Rajagopal, Brody, and Kleban 1992); and are more likely to have unmet needs associated with care provision (Hinrichsen and Ramirez 1992; Wykle and Segal 1991).
The few comparative studies in the literature provide insightful details about the experiences of informal caregivers; however, they have methodological and content limitations that preclude the generalizability of their findings. With regard to methodology, past studies generally have been conducted on relatively small, nonrepresentative, convenience samples of caregivers (Connel and Gibson 1997; Dilworth-Anderson et al. 1999; Farran et al. 1997; Haley et al. 1995, Haley et al. 1996). Furthermore, these studies primarily have focused on comparisons between White and Black caregivers (Connel and Gibson 1997; Farran et al. 1997; Fredman et al. 1995; Haley et al. 1995, Haley et al. 1996; Hinrichsen and Ramirez 1992; Lawton et al. 1992), adding to the difficulties in generalizing to other predominant ethnic groups such as Hispanics. Moreover, none of these studies has focused on ethnic minority caregivers residing in an urban environment, even though this is where most racial/ethnic minorities in the nation live (U.S. Census Bureau 2001). Lastly, with regard to content limitations, past studies provide a relatively narrow view of caregivers' experiences among racial/ethnic minorities.
The purpose of the present study was to extend past research on caregivers by comparing representative samples of White, Black, and Hispanic informal caregivers in a large metropolitan setting to examine commonalties and differences in their experiences and challenges as caregivers. Specifically, it was hypothesized that racial/ethnic minority caregivers would be more likely to provide higher intensity care, report caregiver difficulty with providing care, and have unmet needs with care provision.
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Methods |
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). An equal probability for selection method sampling technique was used to perform random digit dialing. Through this process, a total of 8,329 randomly selected telephone numbers in New York City were identified, 3,338 of which were not registered to households (e.g., business telephones, cell phones, fax numbers). Of the remaining 4,991 households with telephones, 2,241 were successfully contacted between May 1998 and September 1998 to identify individuals with caregiving experience. Eligibility for study inclusion was restricted to persons 18 years of age or older who were directly providing unpaid care or arranging for paid care to a relative or friend for anytime during the 12 months preceding the study. A randomly selected respondent within each household completed a structured, pretested survey questionnaire. Interviews were conducted in English and Spanish and were, on average, 24 min in duration. By applying the American Association for Public Opinion Research's response and eligible participant cooperation rate calculations (http://www.aapor.org/ethics/stddef.html, pp. 18–20; RR4 formula), a 60% participant response rate (proportion of participants of unknown eligibility who agreed to be screened) was calculated using an overall screen-in (eligibility) "incidence" rate of 17% and "accuracy of sample" rate of 50% (i.e., the proportion of telephone numbers never reached that could have been households with or without caregivers). In addition, an overall caregiver cooperation rate (proportion of caregivers interviewed from all eligible caregivers ever contacted) of 84% was obtained. After initial screening, 402 individuals who met the eligibility criteria agreed to participate in the study. Complete data were available for 397 (99%) caregivers, who were stratified into the following groups: White, non-Hispanic (n = 164), Black, non-Hispanic (n = 129), Hispanic (n = 87), and other (n = 17). For analytic purposes, individuals from "other" racial/ethnic backgrounds were excluded from this study.
Data Collection
Data were collected by trained interviewers from the National Opinion Research Center, a survey research firm housed in Chicago, IL. All interviewers completed training on the content of the survey instrument, response skip patterns and coding procedures, telephone-interviewing techniques, and participant-recruitment strategies. The following information was obtained by telephone interviews with informal caregivers: (a) sociodemographic characteristics (e.g., age, sex, race/ethnicity, marital status, education level, employment status); (b) caregiver's and care recipient's health status (e.g., presence of a serious illness, general health status measured using a 4-point Likert scale ranging from poor to excellent); (c) hospitalization of care recipient in the year preceding the study (yes/no); (d) caregiver–care-recipient's relationship (e.g., primary or secondary caregiver, living arrangements, affiliation); (e) use of any formal (i.e., paid professionals or nonprofessionals) care by the care recipient (yes/no); (f) type of care provided specific to activities of daily living (ADLs) such as bathing, dressing, feeding, managing incontinence, getting in or out of bed (transferring), and ambulating; instrumental activities of daily living (IADLs) such as shopping, housework, preparing meals, transportation, making telephone calls, managing finances, and arranging access to government-sponsored programs; performing dressing changes; providing assistance with use of medical equipment; and assisting with or administering prescription medications; (g) hours of care provided per week; (h) duration of care; (i) reported difficulty with providing care (measured using a 4-point Likert scale ranging from very difficult to not at all difficult); and (j) having unmet needs with care provision at any time during the year preceding the study (yes/no).
The Level of Care Index (National Alliance for Caregiving and American Association for Retired Persons 1997) was used to determine caregiving intensity. This index combines the number of ADLs and IADLs performed by the caregiver with the hours of care provided weekly to generate a composite score based on a 5-point scale on which 1 represents least intensive and 5 represents most intensive.
Statistical Analysis
SPSS (SPSS, Inc 1999) was used to perform descriptive statistics (e.g., frequencies, means, standard deviations), bivariate analyses (e.g., Mantel Haenszel chi-square test), and multivariate modeling. Using logistic regression, we used three models, each controlling for the effects of the caregiver's age (continuous) and employment status (1 = employed part-time or full-time, 0 = unemployed) and the care recipient's health status (1 = fair/poor, 0 = good/excellent). The first model examined caregiving intensity (dichotomized as 1 = higher intensity for scores 4 and 5 or 0 = lower intensity for scores 1, 2, and 3), as a function of the caregiver's race (indicator variables were used to compare Black and Hispanic caregivers with White caregivers as the reference group), being a primary caregiver (1 = yes, 0 = no), duration of care (1 = 1 or more years, 0 = less than 1 year), reported difficulty with providing care (1 = somewhat/very difficult, 0 = not at all/not very difficult), having unmet needs with care provision (1 = yes, 0 = no), receiving help from formal caregivers (1 = yes, 0 = no), and experiencing increased religiosity since becoming a caregiver (1 = strongly agree/agree, 0 = disagree/strongly disagree). The second model examined reported difficulty with care provision as a function of the caregiver's race, being a primary caregiver, duration of care, having unmet needs with care provision, caregiving intensity, receiving help from formal caregivers, and experiencing increased religiosity. The third model examined the probability of having unmet needs with care provision as a function of the caregiver's race, being a primary caregiver, duration of care, reported difficulty with care provision, caregiving intensity, receiving help from formal caregivers, and experiencing increased religiosity. Interaction effects between independent variables were assessed in the models and none was statistically significant. Therefore, only the main effects model is presented. Crude (unadjusted) and adjusted odds ratios, 95% confidence intervals, and p values were computed. All of the analyses were weight adjusted to represent the general population of New York City (Bishop, Fienberg, and Holland 1975; Deming and Stephan 1940; Fienberg 1980). Poststratification weight adjustments ranged from 0.05 to 6.5 and were derived using age (18–29, 30–39, 40–49, 50–64, 65 and older), sex (male, female), and race (White, Black, other) as the three respondent characteristics (Bishop et al. 1975). Marginal distributions were estimated using 1996 Population Estimates generated by the Census Bureau (U.S. Census Bureau 1996a).
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Results |
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Caregiver Activities
As described in Table 3 , there were few observed differences between the three groups of caregivers in the duration and frequency with which they provided care and in the frequency with which they received help from formal caregivers. That is, over 70% of caregivers had no help from formal caregivers, even though over 80% had been providing care for at least 1 year, and 40% had been providing this care for 20 or more hr per week.
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Caregiver Challenges
Crude (unadjusted) comparisons of the challenges faced by caregivers are provided in Table 4 . No differences were found across the three groups of informal caregivers in the duration of care or the hours of care provided per week. However, compared with White caregivers, Black caregivers were significantly less likely to be primary caregivers (p < .05) and to report difficulty with providing care (p < .05) but more likely to report having unmet needs with care provision (p < .01) and to experience increased religiosity since becoming a caregiver (p < .01). Similarly, Hispanic caregivers were more likely than White caregivers to report having unmet needs with care provision, to receive help from formal caregivers, and to experience increased religiosity since becoming a caregiver.
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). This inconsistency is most likely due to differences in geography, participant eligibility criteria, sampling techniques, and response rates. The results also revealed several common themes across the three groups of caregivers. First, the majority of the informal caregivers surveyed in this study were primary caregivers who had been providing care for at least 1 year, much of it complex, and with very little help from the formal health care system. Second, long-term caregivers (i.e., those who had provided care for at least 1 year) were more likely to report having unmet needs with care provision. Third, caregivers who reported difficulty with care provision were more likely to be providing higher intensity care and to report having unmet needs with care provision. Although more comprehensive in scope, these findings support previous observations on the complexities of caregiving and the dynamics of juggling one's own life in the midst of caring for a loved one in poor health (Dilworth-Anderson et al. 1999; Kosloski, Montgomery, and Karner 1999; Lawton et al. 1992; Levine et al. 2000; National Alliance for Caregiving and the American Association for Retired Persons 1997; Navaie-Waliser et al. in press). As initially hypothesized, the findings revealed that caregiving workload, reported difficulty with care provision, and having unmet needs with care provision were not uniform across informal caregivers of different racial/ethnic backgrounds. Therefore, these results underscore the importance of examining subgroups of caregivers for their special experiences and challenges rather than considering them undifferentiated members of a homogenous group of informal caregivers.
Compared with White caregivers, Black caregivers appeared to have a heavier caregiving workload and were more likely to report having unmet needs with care provision. These findings concur with past studies (Fredman et al. 1995; Hinrichsen and Ramirez 1992; Mui 1992; Wykle and Segal 1991) and are consistent with broader observations of racial/ethnic disparities in access to health care services. Moreover, the intensity of care provided by these caregivers was not mitigated by the provision of formal care. This latter finding could be attributed to the different types of support needs addressed by informal versus formal caregivers (e.g., greater IADL and emotional care provided by informal caregivers versus ADL care provided by formal caregivers) or inadequate support from the system that provides formal caregiver services. It also could reflect cultural preferences for familiar informal caregivers rather than formal care provided by unknown service agencies or through government programs, as has been suggested in the literature (Barresi and Mennon 1990; Hing and Bloom 1990; Holmes, Teresi, and Holmes 1983; Kosloski et al. 1999; Marchi-Jones, Murphy, and Rousseau 1996). Given the delivery of higher intensity care and reports of having unmet needs with care provision, it might be expected that Black caregivers also would report greater difficulty with care provision. To the contrary, our results suggest the opposite. Black caregivers were half as likely as White caregivers to report difficulty with care provision, a finding that could be associated to their lower likelihood of being a primary caregiver. Other possible explanations that are consistent with related past observations could be lower reported stress levels (Farran et al. 1997; Miller and Snigdha 1999; Wallace, Levy-Storms, and Andersen 1997; Wallace, Levy-Storms, Kingston, and Andersen 1998) and perceptions of lower caregiving burden (Connel and Gibson 1997; Fredman et al. 1995; Knight et al. 2000) among Black caregivers when compared with White caregivers. Another finding that was consistent with past studies was that Black caregivers were more likely than White caregivers to experience increased religiosity since becoming caregivers, suggesting a greater reliance on religious beliefs as a potential coping strategy by this population (Nkongho and Archbold 1995, Nkongho and Archbold 1996; Picot, Debanne, Namazi, and Wykle 1997; Wykle and Segal 1991).
Few studies to date have compared the experiences and challenges of Hispanic and White caregivers. Results from the limited number of studies that have explored differences in these populations have suggested that Hispanic caregivers are more likely than White caregivers to be family members of the care recipient than friends (Holmes et al. 1983; Penrod et al. 1995; Tennstedt et al. 1989), to have unmet perceived needs (Mui 1992; Wykle and Segal 1991), and to engage in religious activities for coping purposes (Tix and Frazier 1998). Our findings concurred with only the last observation, suggesting that Hispanic caregivers appeal to religion or spirituality in dealing with the caregiving challenges. Although we found relatively little difference in caregiving workload, reported difficulty with rendering care, and unmet needs with care provision between Hispanic and White caregivers, Hispanic caregivers were more likely than White caregivers to receive help in care provision from formal care providers. However, given the relatively small number of Hispanics in this study, along with the small fraction of caregivers who reported receiving help from formal caregivers, this observation warrants cautious interpretation.
Limitations of the Study
This study's findings must be viewed in light of several survey limitations. First, it should be noted that the study was vulnerable to nonsampling errors 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 5%. Efforts were taken to minimize sources of error including pilot testing of the survey instrument with focus groups, devising alternative forms of the screening instrument, conducting pilot tests, training interviewers, and providing extensive supervision during the data collection phase of the study. Moreover, depending on response patterns, up to 50 attempts were made to contact selected eligible participants. Second, there was no information pertaining to the care recipients' cognitive functioning, the presence of comorbidities, or other relevant care recipient characteristics that could serve as indicators of need for formal and informal care. Third, the caregiver eligibility criteria used in this study were quite broad. Thus, the results may not be generalizable to certain populations of caregivers (e.g., caregivers who provide only direct hands-on care rather than coordinate the care needs of relatives and friends). Moreover, because the participant eligibility criteria used in this study did not include an age restriction that captured only older adult care recipients, the results are based on a relatively young sample of care recipients and, thus, may not be representative of the severely impaired population of care recipients who are likely to receive multiple forms of care (informal and formal) with varying intensity and cost. Fourth, although this study adds to our present knowledge about caregiving, some of its measures (e.g., the single-item binary indicator used to measure perceived unmet needs) are relatively weak. Future studies will need to expand on some of the measures in this study by devising related sets of questions with scaled response categories that would enable a more comprehensive examination of these measures. Fifth, given the challenges of collecting data by telephone surveys, this study's findings were based on lower than desirable response (60%) and cooperation rates (84%). Moreover, because this survey was conducted by telephone, it underrepresented households that did not have a telephone. Lastly, this study's findings were derived from relatively small samples of Black and Hispanic caregivers, thus caution is warranted in overgeneralizing the results to these populations.
Strengths of the Study
Despite its limitations, this study extends previous research on caregiving in several ways. First, unlike past surveys—which generally have been conducted on convenience (nonrandom) samples of informal caregivers—this study was based on data obtained from randomly selected representative samples of households with informal caregivers. Second, in contrast to past research that typically has considered informal caregivers a fairly homogenous population, the present study focused on comparisons between different groups of informal caregivers based on their racial/ethnic backgrounds. Third, this study is one of the first comparative studies to broadly examine the experiences and challenges of caregiving among White, Black, and Hispanic caregivers in a large metropolitan setting. Taken together, the present study addresses some of the methodological and content limitations in the caregiving literature by providing more generalizable results and additional insight into the world of caregivers.
Informal caregivers are a tremendous social resource, providing an estimated $196 billion in uncompensated care (Arno, Levine, and Memmott 1999). Additional efforts should be made to gain insight about the experiences and challenges of different populations of informal caregivers to facilitate the development and implementation of culturally sensitive programs and policies that are supportive of the needs of these caregivers in their ever-expanding roles. Moreover, future studies should focus on exploring the potentially significant roles that community resources—in particular, religious institutions—could play in providing outreach and support to racial/ethnic minority caregivers.
Practice Concepts
The Forum
Book Reviews
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Acknowledgments |
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Received for publication September 25, 2000. Accepted for publication July 31, 2001.
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