The Experiences and Challenges of Informal Caregivers: Common Themes and Differences Among Whites, Blacks, and Hispanics

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1 The Gerontologist Vol. 41, No. 6, Copyright 2001 by The Gerontological Society of America The Experiences and Challenges of Informal Caregivers: Common Themes and Differences Among Whites, Blacks, and Hispanics Maryam Navaie-Waliser, Dr.PH, 1 Penny H. Feldman, PhD, 1 David A. Gould, PhD, 2 Carol Levine, MA, 2 Alexis N. Kuerbis, BA, 2 and Karen Donelan, ScD 3 Purpose: This study examined commonalities and differences in the experiences and challenges of White, Black, and Hispanic informal caregivers in New York, NY. Design and Methods: A randomly selected representative cross-section of 2,241 households was contacted through telephone interviews. Complete data were available for 380 eligible participants, who were classified as White (n 164), Black (n 129) and Hispanic (n 87). Descriptive, bivariate, and multivariate analyses were conducted to examine differences in caregiving intensity, reported difficulty with providing care, and having unmet needs with care provision. Results: 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. Compared with White caregivers, Black caregivers were more likely to provide higher intensity care, to report having unmet needs with care provision, and to experience increased religiosity since becoming caregivers, but were less likely to report difficulty with providing care. Hispanic caregivers were more likely than White caregivers to have help from formal caregivers and to experience increased religiosity since becoming caregivers. Implications: Although many This research was funded by the Visiting Nurse Service of New York and the United Hospital Fund as part of a larger national study of family caregivers commissioned by the Henry J. Kaiser Foundation and conducted by the Harvard School of Public Health. We thank the anonymous reviewers and Dr. Timothy Peng for their constructive suggestions, which helped to improve the clarity and readability of this article. Drafts of this article were presented at the annual meetings of the Association for Health Services Research, Los Angeles, California, June 2000, and the American Public Health Association, Boston, Massachusetts, November Address correspondence to Maryam Navaie-Waliser, Senior Research Associate, Center for Home Care Policy and Research, Visiting Nurse Service of New York, 5 Penn Plaza, 11th floor, New York, NY maryam.navaie@vnsny.org 1 Center for Home Care Policy and Research, Visiting Nurse Service of New York, NY. 2 United Hospital Fund, New York, NY. 3 Department of Health Policy and Management, Harvard School of Public Health, Boston, MA. similarities exist in the experiences and challenges of informal caregivers, gaining insight from different populations of family caregivers would help program planners, policy makers, and formal caregivers to develop and implement culturally sensitive programs and policies that are supportive of the needs of these caregivers in their ever-expanding roles. Future efforts also should focus on exploring the potentially significant role that community resources, in particular, religious institutions, could play in providing outreach and support to racial/ethnic minority caregivers. 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, 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, 733

2 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, & 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 & Ramirez, 1992; Wykle & Segal, 1991), the kinship between caregivers and care recipients (Penrod, Kane, Kane, & Finch, 1995; Tennstedt, McKinlay, & Sullivan, 1989), the amount and type of assistance provided by caregivers (Haley, West, Wadley, et al., 1995; Knight, Merril, McCallum, & 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, & 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 & Archbold, 1995, 1996); are more likely to provide a greater volume of informal care (Mui, 1992; Fredman, Daly & Lazur, 1995); are less likely to be depressed (Connel & Gibson, 1997; Miller & Snigdha, 1999; Farran et al., 1997), stressed (Connel & Gibson, 1997; Miller & Snigdha, 1999) or feel burdened (Haley et al., 1995; Haley, Roth, Coleton, et al., 1996; Knight et al., 2000; Lawton, Rajagopal, Brody, & Kleban, 1992); and are more likely to have unmet needs associated with care provision (Hinrichsen & Ramirez, 1992; Wykle & 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 & Gibson, 1997; Dilworth-Anderson et al., 1999; Farran et al., 1997; Haley et al., 1995, 1996). Furthermore, these studies primarily have focused on comparisons between White and Black caregivers (Connel & Gibson, 1997; Farran et al., 1997; Fredman et al., 1995; Haley et al., 1995, 1996; Hinrichsen & 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. Methods Study Design and Sample This study was undertaken as part of a broader study of family caregivers in New York City (Levine, Kuerbis, Gould, et al., 2000). 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 ( ethics/stddef.html, pp ; 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 ana- 734 The Gerontologist

3 lytic 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 governmentsponsored 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, & Holland, 1975; Deming & 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). Results Sociodemographic and Health Characteristics of Informal Caregivers As shown in Table 1, White, Black, and Hispanic caregivers differed little in their sociodemographic and health characteristics. Age and employment status were the only two characteristics that were significantly different across the three groups of caregivers. Compared with White caregivers, a significantly greater proportion of Black and Hispanic caregivers were younger than 50 years old (p.01). The average caregiver age was 50 (SD 16) for Whites, 41 (SD 13) for Blacks, and 37 (SD 15) for Hispanics. In addition, a significantly greater proportion of Black caregivers were employed as compared with White or Hispanic caregivers (p.01). 735

4 Table 1. Sociodemographic and Health Characteristics of Informal Caregivers Characteristic White (%) (n 164) Black (%) (n 129) Hispanic (%) (n 87) Sociodemographic Characteristics a Age (years)** ** 75** Sex Male Female Marital Status Married Not Married Education Level High School Graduate High School Graduate Employment Status (Part or Full Time)** Employed 56 73** 56 Unemployed Health Status a Serious Health Problem Yes No Note: Data have been weight-adjusted. a Data are missing for 1% of participants. **p.01. Care Recipient s Characteristics and Relationship with Caregiver Table 2 describes the general characteristics of care recipients and the caregiver care-recipient s relationship. Compared with the care recipients of White caregivers, care recipients of Black and Hispanic caregivers were more likely to be 50 to 64 years old (p.01). In contrast, a significantly higher proportion of care recipients of White caregivers Table 2. Care Recipient s Characteristics and Relationship with Caregiver Caregiver s Race/Ethnicity Variable White (%) (n 164) Black (%) (n 129) Hispanic (%) (n 87) Care Recipient s Characteristics a Age (years)** ** 22** Sex Male Female Serious health problem Yes No Hospitalized in past year Yes No Caregiver-Care Recipient Relationship b Primary caregiver Yes No Affiliation Family Nonfamily Care recipient s living arrangement Lives with caregiver Lives alone Other Note: Data have been weight-adjusted. a Data are missing for 1% of participants. b Data are missing for 5% of participants. **p The Gerontologist

5 were 65 years of age or older as compared with the care recipients of Black and Hispanic caregivers (p.01). The average age of care recipients was 71 years (SD 20) for White caregivers and 65 years (SD 20) for both Black and Hispanic caregivers. The care recipients did not differ in having a serious health problem or having been hospitalized in the past year. In examining the caregiver care-recipient s relationship, the results revealed that the majority of the caregivers were primary caregivers and most were family members of the care recipient. Approximately one third of care recipients lived with their caregivers and another one third lived alone. 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. The most common caregiving activity focused on IADLs, and its provision did not differ across racial/ ethnic groups. However, significant differences were observed in the provision of ADLs, with Black and Hispanic caregivers providing more care with certain ADLs such as dressing (p.01), feeding (p.01), and transferring (p.01), as compared with White caregivers. Moreover, Black caregivers were significantly more likely than White or Hispanic caregivers to be providing higher intensity care (p.01). 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 Table 3. Caregiver Activities Variable White (%) (n 164) Black (%) (n 129) Hispanic (%) (n 87) Received help from formal care providers* Yes * No Type of care provided Activities of Daily Living Bathing* 25 38* 22 Dressing** 34 57** 42** Feeding** 14 27** 27** Incontinence Transferring** 35 54** 45** Ambulating Instrumental Activities of Daily Living Shopping Housework Preparing meals Transportation Telephone calls Managing finances Government assistance Performed dressing changes Assisted with medical equipment use Assisted with medication use Hours of care/week Duration of care 1 year year Caregiving intensity a ** 1 (least intensive) 27 15** ** ** ** 31 5 (most intensive) Notes: Data have been weight-adjusted. Data are missing for 5% of participants. a A composite measure that combines the number of ADLs and IADLs performed by the caregiver with the hours of care provided weekly. *p.05; **p

6 Table 4. Caregiver Challenges Odds Ratio (95% Confidence Interval) Variable White Black Hispanic Primary caregiver Referent 0.62 (0.38, 0.97)* 0.64 (0.37, 1.10) Reported difficulty providing care Referent 0.63 (0.34, 0.97)* 0.79 (0.47, 1.34) Reported having unmet needs with care provision Referent 2.45 (1.36, 4.44)** 2.12 (1.10, 4.11)* Provided care for one or more years Referent 0.82 (0.45, 1.52) 0.90 (0.45, 1.82) Provided 20 hr of care/week Referent 1.53 (0.95, 2.48) 1.27 (0.74, 2.18) Received help from formal caregivers Referent 1.27 (0.72, 2.24) 2.07 (1.13, 3.78)** Experienced increased religiosity since becoming a caregiver Referent 2.16 (1.13, 3.51)** 2.90 (1.67, 5.02)** Notes: Data have been weight-adjusted. Data are missing for 5% of participants. Values are crude (unadjusted) odds ratios. *p.05; **p.01. 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. Multivariate Findings As shown in Table 5, after adjusting for potential confounders, the results revealed several common trends across all three groups of caregivers. The provision of higher intensity care was significantly associated with being a primary caregiver (p.01). In addition, compared with caregivers who provided care for less than 1 year, caregivers who provided care for 1 or more years were less likely to report difficulty with providing care (p.01) but more likely to report having unmet needs with care provision (p.01). Moreover, reported difficulty with care provision was significantly associated with higher caregiving intensity (p.01) and reports of having unmet needs with care provision (p.01). Furthermore, caregivers who received help from formal Table 5. Results From Logistic Regression Models Predictor Adjusted Odds Ratio a 95% Confidence Interval Model #1: Higher Caregiving Intensity (n 302) bc Race d Black 2.18 (1.18, 4.02)** Hispanic 1.18 (0.58, 2.42) Primary caregiver 2.14 (1.28, 3.59)** Care provided for one or more years 0.71 (0.36, 1.40) Caregiver reported difficulty with providing care 2.72 (1.63, 4.54)** Caregiver reported having unmet needs with care provision 0.67 (0.35, 1.28) Received help from formal caregivers 2.69 (1.45, 4.96)** Experienced increased religiosity since becoming a caregiver 2.16 (1.29, 3.61)** Model #2: Caregiver Reported Difficulty With Care Provision (n 302) be Race d Black 0.50 (0.27, 0.91)* Hispanic 0.59 (0.29, 1.18) Primary caregiver 1.03 (0.61, 1.73) Care provided for one or more years 0.37 (0.18, 0.73)** Caregiver reported having unmet needs with care provision 2.20 (1.16, 4.19)** Higher caregiving intensity 2.77 (1.65, 4.64)** Received help from formal caregivers 2.75 (1.51, 5.00)** Experienced increased religiosity since becoming a caregiver 0.75 (0.44, 1.26) Model #3: Caregiver Reported Having Unmet Needs With Care Provision (n 302) bf Race d Black 2.68 (1.30, 5.54)** Hispanic 1.21 (0.52, 2.84) Primary caregiver 0.85 (0.45, 1.60) Care provided for one or more years 3.74 (1.47, 9.52)** Caregiver reported difficulty providing care 2.15 (1.13, 4.10)* Higher caregiving intensity 0.70 (0.37, 1.35) Received help from formal caregivers 2.69 (1.37, 5.25)** Experienced increased religiosity since becoming a caregiver 2.09 (1.12, 3.88)* a Models adjusted for the caregiver s age and employment status and the care recipient s health status. b Data have been weightadjusted. c Goodness of fit measures: 2 log likelihood , R d White race was used as the referent group. e Goodness of fit measures: 2 log likelihood , R f Goodness of fit measures: 2 log likelihood , R *p.05; **p The Gerontologist

7 caregivers were more likely than were caregivers who did not receive help from formal caregivers to be providing higher intensity care (p.01), to report difficulty with providing care (p.01), and to report having unmet needs with care provision (p.01). In addition, caregivers who provided higher intensity care and reported having unmet needs with care provision were more likely than were caregivers who provided lower intensity care and did not report having unmet needs with care provision to experience increased religiosity since becoming caregivers (p.01). The findings also revealed important differences between White, Black, and Hispanic caregivers. Black caregivers were more than twice as likely as White caregivers to provide higher intensity care (p.01) and to report having unmet needs with care provision (p.01). However, Black caregivers were half as likely as White caregivers to report having difficulty with providing care (p.05). In contrast, comparisons between Hispanic and White caregivers revealed no significant differences in caregiving intensity, reported difficulty with care provision, and reports of having unmet needs with care provision. Discussion This study examined commonalties and differences in the experiences and challenges of representative samples of White, Black, and Hispanic informal caregivers in New York City. The results revealed a caregiver prevalence rate of 17% among households in New York City, a figure smaller than the 23% caregiver prevalence rate reported nationally (National Alliance for Caregiving and American Association for Retired Persons, 1997). 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, & 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 & Ramirez, 1992; Mui, 1992; Wykle & 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 & Mennon, 1990; Hing & Bloom 1990; Holmes, Teresi, & Holmes, 1983; Kosloski et al., 1999; Marchi-Jones, Murphy, & 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 & Snigdha, 1999; Wallace, Levy-Storms, & Andersen, 1997; Wallace, Levy-Storms, Kingston, & Andersen, 1998) and perceptions of lower caregiving burden (Connel & 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 & Archbold, 1995, 1996; Picot, Debanne, Namazi, & Wykle, 1997; Wykle & 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 739

8 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 & Segal, 1991), and to engage in religious activities for coping purposes (Tix & 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, itemresponse 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. 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