The study of caregiver burden is important for those faced with chronic illnesses such as AIDS as caregivers are the first line of care provision, sustaining care recipients in the home. Because perception of burden may vary across caregiver cultural groups, accurate measurement of burden is crucial to offer culturally sensitive services for those providing in-home care. The purpose of this study was to test the factor structure of a rapid assessment instrument, the Latina Caregiver Burden Scale, in a sample of 154 newly immigrated Latina caregivers primarily of Mexican descent. Face-to-face interviews were conducted in Spanish and English by bilingual, bicultural interviewers. The findings suggest that aspects of caregiver burden for these low-income women are tied to factor structures associated with depression and guilt mentality, socioeconomic stress, and stigma linked with HIV/AIDS. Social workers have greater likelihood of accurate cultural assessment of caregiver burden in similar groups when using such research-supported measures.
KEY WORDS: assessment scale; burden; caregiver ; Latina / Latino ; women
Although burdens associated with extended caregiving for an ill relative have been well documented with valid and reliable measures in white groups, these same burdens have been little studied in ethnic minority samples (Awad & Voruganti, 2008; Land & Hudson, 2004). Such measures are needed as social workers in the health arena may find caregiver perceptions of burdens, and the emotional response to different aspects of the caregiving role, to be extremely valuable in comprising ongoing service plans. Moreover, caregivers' perceptions of burden may vary across cultural and ethnic groups; thus, accurate assessment of burden is crucial if social workers are to provide culturally sensitive services to relieve caregiver stress.
With the rapid rise of immigration, especially in California, recent attention has turned to family caregiving in Latino cultures, where family values are strong and women constitute the backbone of caregiving (de Figueiredo & Turato, 2001; Madianos et al., 2004; Magana, 2006; Oliveros, 2008). Especially among newly emigrated Latinos, caregiving tasks fall to Latinas because of strong cultural role expectations and limited services for care outside the home (Oliveros, 2008). Nonetheless, adequate culturally sensitive measures of caregiver burden are lacking (Janevic & Connel, 2001; Neff, Amodei, Valescu, & Pomeroy, 2003; Shurgot & Knight, 2004). The present study tested the factor structure of a rapid assessment instrument measuring burden in a sample of 154 newly immigrated Latina caregivers, a population underserved in both practice and research.
Burden and Caregiving in Latino Cultures
Studies reveal that Latina female caregivers dedicate an enormous portion of their lives to the caregiving role and provide substantial assistance to ill, orphaned, and elderly relatives (Choppelas & Wilson, 2006; Shurgot & Knight, 2004; Wight, Aneshensel, & LeBlanc, 2003). For a variety of reasons, these tasks may be more burdensome for some Latino groups, such as caregivers who are poorer, recently emigrated, undocumented women of Mexican and Central American origin who have traveled North across the border in search of a better life in California. To meet the needs of a relative with a complex chronic illness, such as HIV or Alzheimer's disease, caregivers are often required to have knowledge of multiple services to promote disease management (Oliveros, 2008). Caregivers must understand the illness, facilitate the required services, and likewise become familiar with the service systems and individuals involved in the care of the patient (Choppelas & Wilson, 2006; Magana, Ramirez Garcia, Hernandez, & Cortez, 2007; Oliveros, 2008). Concomitantly, many female caregivers of Mexican and Central American origin often cope with the burdens of acculturation, lack of documentation and accompanying fear of deportation, and resulting isolation (County of Los Angeles, Department of Public Health, HIV Epidemiology Program, 2009) and may not be knowledgeable about health care services (Flaskerud & Nyamanthi, 1990; Land & Hudson, 1997, 2004).
Furthermore, research suggests that Latinos are often reluctant to seek outside help or early care for their illnesses. This situation may exist because of disease stigma, as in the case of AIDS, and there being few services that validate and attend to the needs of Spanish-speaking people with specific beliefs and cultural values such as a preference for allocentric (smooth) relationships, familism, acceptance of life's suffering, and the sociocentric quality of many Latino cultures (Barrio, 2001; Herrera, Lee, Nanyonjo, Laufman, & Torres-Vigil, 2009; Magana, 2006). Most Mexican and Central American women caregivers reside in very poor communities, where health and social services are limited (Hackl, Somalai, Kelly, & Kalichman, 1997; Land & Hudson, 2004; Medrano & Klopner, 1992). Where outside resources do exist, family members may view them as unnecessary, insensitive to familial needs, or intrusive (Barrio, 2001; Borrayo, Goldwaser, Vacha-Haase, & Hepburn, 2007; Magana, 2006; O'Connor, 1995; Purdy & Arguello, 1992). Because many of these caregivers lack immigration documents, they often fail to qualify for physical and mental health benefits, child care, rent subsidies, or other supportive services (Dennenberg, 1997; Land, 1994). Agencies such as HIV clinics serving the undocumented population and faith-based home-health programs could benefit from accurate assessments of caregiver burden for this group of female caregivers.
Given the multiple demands ofcaregiving (such as feeding, cleaning, bathing, administering medication, laundering, shopping), coupled with limited financial and supportive resources, it is understandable that many recently emigrated female caregivers of Mexican and Central American origin are faced with a powerful stress process that predictably pushes the boundaries of human physical and emotional capabilities (Caqueo-Urizar & Gutierrez-Maldonado, 2006; Demi, Bakeman, Moneyham, Sowell, & Seals, 1997). Such Latina family caregivers constitute a burgeoning vulnerable group at risk for the physical and psychological sequelae of caregiving (Kaplan & Mertens, 1997; Sarmiento & Cardemil, 2009). The need for a rapid assessment tool to measure burden seems all the more pertinent given this group's heightened vulnerability to the stressors that can result in deleterious outcomes such as poor health and poor mental health for the caregiver (Madianos et al., 2004; Magana, 2006; Oliveros, 2008). To date, there are few studies regarding the unique experiences of burden for caregivers of Mexican and Central American descent in the literature (Land & Hudson, 1997, 2002).
Construct Models of Caregiver Burden
In their seminal investigation of burden, Hoenig and Hamilton (1966) delineated objective and subjective components of caregiver burden to better understand the construct in their study of family caregivers of relatives with schizophrenia. Generally, objective burden is conceptualized as the strain resulting from direct negotiation of situational stressors, such as financial strain, and the demands of the physical activities often required in the caretaking process, such as bathing and feeding the care recipient. Subjective burden is conceptualized as the emotional--experiential appraisal of caregiving, such as feeling entrapped by the tasks required, feeling anxious or depressed about what the future holds for the ill family member, and thinking about the additional conflicts between family members secondary to the strain of caretaking (Chimwaza & Watkins, 2004; Kung, 2003; Nabors, Seacat, & Rosenthal, 2002; Wight et al., 2003). Several important studies from the 1990s found that the cultural background of the caregiver influenced the appraisal of burden, in addition to stressful events, use of support, and coping behaviors (Aranda & Knight, 1997; Baronet, 1999). More recent findings have suggested that certain dimensions of burden remain constant in predicting caregiver well-being and that other dimensions of burden vary across cultural groups (Heymann, Earle, Rajaraman, Miller, & Bogen, 2007; Page, Geoff, O'Brien, & Felice, 2006).
Although the further growth of available burden inventories has brought an overall improvement of their psychometric properties (Land & Hudson, 1997, 2002, 2004), in our literature review, recent investigations of burden continue to rely on burden inventories that have used white samples, such as the Robinson (1983) caregiver stress index and Given et al.'s (1992) measure of caregiver burden. These inventories are frequently used regardless of the ethnicity or race of the sample under study (Choppelas &Wilson, 2006; Oliveros, 2008; Pirraglia et al., 2005). Other studies used no inventory at all (Fredriksen-Goldsen & Hoy-Ellis, 2007).
To date, questions continue to surface as to whether the factor structures in burden inventories are similar across cultural groups. In an effort to respond to these concerns, we undertook a study that examined the factor structure of a short burden inventory in a sample of Latina caregivers--in this case, women of primarily Mexican and Central American descent. We were particularly interested in documenting whether factor structures were similar to or different from those normed On white caregivers. Second, we were interested in developing a rapid assessment tool for accurate measurement of burden among these caregivers for whom very little is known and that would be useful for home-health social workers in assessing and treating caregiver burden for these groups. A crucial first step was to run an exploratory factor analysis (EFA) on the factor structure of this burden inventory. We chose a validated caregiver burden measure--the Burden Assessment Scale (BAS)...