Hispanic Caregivers Research Articles

Money Follows the Person and Informal Caregivers: Insights Into a New Stage of the Caregiving Career

The Money Follows the Person (MFP) program transitions people to the community after extended institutional stays. This study examines effects of this transition on informal caregivers in this new caregiving career stage. Analyses explore whether and how MFP affects caregivers according to caregiver race/ethnicity, and care recipient age and disability type. Data come from surveys with 686 caregivers of persons in Connecticut’s MFP from November 2014-November 2018. Using Pearlin’s Caregiver Stress Process Model, bivariate and multivariate analyses examine predictors of multiple caregiver well-being indicators. Care recipients: older adults (50%), and younger persons with physical (35%), mental health (8%) or developmental (7%) disabilities. Caregivers: non-Hispanic White (62%), non-Hispanic Black (24%), and Hispanic (14%). Caregivers’ average assistance is 5 days/week, 6 hours/day, with 3 activities of daily living and 5 instrumental activities; 11% are paid for caregiving. Compared to other community-based samples, they report low mean levels of burden (4.7 of 16), anxiety (2.2 of 18) and depressive symptoms (31%), and high positive feelings about caregiving (9.5 of 12). A majority feel less stressed (60%) or no change in stress (20%) compared to before and during the institutional stay. Caregivers across the four care recipient groups don’t differ on most outcomes, although more caregivers of people with developmental disabilities (82% vs. 55-61%) report less stress once the person transitions. Black and Hispanic caregivers report more intensive caregiving, but White caregivers report more burden and subjective stress. Findings illustrate the benefits of programmatic support during a newly defined post-institutionalization caregiving career stage.

Key Activities of Caregivers for Individuals With Parkinson Disease: A Secondary Analysis.

Individuals with Parkinson disease (PD) require support from family caregivers because of decreased functional levels in a later stage. Much of the research with PD caregivers has been limited by relatively homogenous samples of primarily White and largely spousal caregivers. This secondary analysis aimed to describe a national sample of caregivers of individuals with PD in the Caregiving in the U.S. 2015 data set and their activities, including activities of daily living (ADLs), instrumental ADLs (IADLs), and key activities they performed for individuals with PD. Fifty-four caregivers (32 women) were included. The mean (SD) age was 57.7 (16.9) years, and the sample included 57% White, 9% Black, 15% Asian, and 17% Hispanic caregivers. Relationships to care recipient were 32% spouses, 20% mothers, and 11% fathers, with the remaining being a variety of relationships. The number of ADLs and IADLs performed by the caregiver was 2.85 (SD, 2.18) and 4.72 (SD, 2.08), respectively. The most frequent ADLs were getting in and out of beds and chairs, getting dressed, getting to and from the toilet, and bathing/showering. The most frequent IADLs were transportation, shopping, managing finances, giving medicine, preparing meals, and housework. This study shows the number of ADLs and IADLs performed by a diverse group of PD caregivers and indicates the need to acknowledge the extensive work performed by caregivers.

A New Stage of the Caregiving Career: Informal Caregiving After Long-term Institutionalization.

The "unexpected career" of caregiving has previously been conceptualized in stages: community care through institutional placement/residence, ending with death of the care recipient. Transition programs such as Money Follows the Person (MFP) created a new stage of the caregiving career, caring for someone post-long-term institutionalization, about which little is known. Using Pearlin's Caregiver Stress Process Model, this study explores effects on caregivers from the return of their loved ones to the community after a long-term institutional stay. Cross-sectional surveys of 656 caregivers of persons transitioned through Connecticut's MFP program 2014-2018, completed 6 months posttransition. Regardless of the age/disability of the care recipient, and despite experiencing high caregiving intensity, caregivers experienced less burden, anxiety, and depression, and higher benefits of caregiving than demonstrated in literature for the general caregiving population. Most felt less stressed than before and during the participant's institutional stay. Factors associated with worse outcomes included worry about safety, strained finances, missing work, and desiring additional services. Black and Hispanic caregivers experienced lower burden and anxiety and higher benefits of caregiving than White caregivers. By providing community supports to participants, transition programs can have broad ancillary benefits for caregivers and improve outcomes in the Pearlin model, lessening potentially deleterious effects of an unexpected return to intensive caregiving duties after institutional placement. Positive results for Black and Hispanic caregivers may reflect cultural expectations in caring for family that buffer the adverse effects of caregiving.

Timing of Immigration Effects Asset Change Among Hispanic Caregivers of Older Family Members.

Given the cultural value of family in Hispanic culture, older Hispanic immigrants are likely to have family caregivers. This study examined the economic implications of caring for older Hispanic adults regarding non-housing financial wealth over time. Using the 2008, 2010, and 2012 waves of the Health and Retirement Study (HRS) and RAND HRS data files, this study compares changes in the non-housing financial wealth between 2008 and 2012 by caregiving and immigration status among Hispanics. This study examined differences in assets between Hispanic caregivers and non-caregivers and more specifically examined the subpopulation of Hispanic caregivers who immigrated prior to and after 1968 as compared to U.S.-born caregivers to better understand the effect of the Immigration and Nationality Amendment Act of 1965 on asset change. Results indicate that caregiving itself did not have a statistically significant association with wealth, but the timing of immigration to the US had a statistically significant correlation (p < .05) with changes in the financial wealth. The findings of this study have implications for policy and program development targeting older adults and caregiving for this population.

Caregiver Well-Being and Burden: Variations by Race/Ethnicity and Care Recipient Nativity Status.

Background and ObjectivesDespite growing diversity among the aging population and extensive previous research on racial/ethnic minority caregivers, little research has been conducted on the potentially unique experiences and outcomes of informal caregivers of foreign-born care recipients. Using nationally representative data and the Stress Process Model, the current study examined the differences in caregiver outcomes (care burden, psychological well-being, and self-rated health) by care recipient nativity status (U.S.-born vs. foreign-born) and the extent to which caregiver outcomes vary by care recipient nativity status and caregiver race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, and Others).Research Design and MethodsThe current study used Round 5 of the National Health and Aging Trends Study and the National Study of Caregiving (N = 1,436). We conducted ordinary least squares regression to analyze the differences in caregiver’s outcomes by care recipient nativity status and caregiver race/ethnicity and to investigate the impacts of the inclusion of caregiving factors (background factors, primary stressors, secondary stressors, and resources).ResultsRegression analyses showed that only care burden significantly varied by care recipient nativity status after controlling for covariates. Caregivers of foreign-born care recipients reported a higher burden. However, when interactions of care recipient nativity status × caregiver race/ethnicity were introduced, non-Hispanic black and Hispanic caregivers of foreign-born care recipients were more likely to report better psychological well-being and self-rated health compared to their counterparts. Across caregiver groups, better caregiver–care recipient relationship quality and less caregiver chronic conditions were associated with less burden and better caregiver psychological well-being and self-rated health.Discussion and ImplicationsCare recipient nativity status and caregiver race/ethnicity may have complex effects on caregiving experiences. Given the observed significant interaction effects for caregiver psychological well-being and self-rated health, cultural factors may affect the extent to which these caregivers appraise their caregiving. Future research should delve into the appropriate ways to assess care stress as well as resilience among each caregiver group. Our results indicate the need for research, education, and practice that assess cultural and within-group differences among caregivers and inform needed changes to structural barriers.

Applying Artificial Intelligence to Predict Self-Reported Poor Health Among Black and Hispanic Caregivers with Mild Cognitive Impairment.

We applied artificial intelligence techniques to build correlate models that predict general poor health in a national sample of caregivers with mild cognitive impairment (MCI). Our application of deep learning identified age, duration of caregiving, amount of alcohol intake, weight, myocardial infarction (MI) and frequency of MCI symptoms for Blacks and Hispanics whereas frequency of MCI symptoms, income, weight, coronary heart disease (CHD), age, and use of e-cigarette for the others as the strongest correlates of poor health among 81 variables entered. The application of artificial intelligence efficiently provided intervention strategies for Black and Hispanic caregivers with MCI.

Abstract B135: Health literacy disparities among Hispanic caregivers of children with newly diagnosed cancer

Abstract Objective: Health literacy (HL) is the ability to understand process and act on health-related information to function effectively in a healthcare environment. Thirty-six percent of U.S. adults have limited HL and Hispanics have the lowest among all racial/ethnic groups. Individuals with limited HL have higher healthcare utilization and poorer health status. Caregivers of children with cancer must process complex information about the disease to effectively navigate the healthcare system. Research on HL in the pediatric cancer setting is lacking. We assessed HL in Hispanic and non-Hispanic White (NHW) caregivers (primarily parents) of children with newly diagnosed cancer and the correlation of different measures of HL among each other. Additionally, we assessed socio-demographic factors and acculturation levels in Hispanic caregivers as covariates. Methods: Sixty-one caregivers of children with cancer (ages 0-17 y), newly diagnosed at Rady Children’s Hospital-San Diego were enrolled. To assess HL, we used the English or Spanish form of the 1) Short-form of the Test of Functional Health Literacy Assessment (S-TOFHLA), 2) Newest Vital Sign (NVS), 3) Parental Health Literacy Activities Test (PHLAT), 4) Rapid Estimate of Adult Literacy in Medicine (REALM) or Short Assessment of Health Literacy for Spanish Adults (SAHLSA-50), and 5) Brief Health Literacy Screen (BHLS). To measure acculturation, we used the Hispanic Acculturation Questionnaire (SASH). Two-sample t-tests, univariate/multivariate linear regression, and Pearson-correlation analyses were used for statistical analysis. Results: Hispanic caregivers had significantly lower HL, as measured by the NVS, than NHWs (p&amp;lt;0.001). In caregivers, lower HL levels (measured by the NVS and S-TOFHLA) were positively correlated with older age (p&amp;lt;0.001), lower education level (p&amp;lt;0.001), informal employment (p&amp;lt;0.006), and Spanish primary language (p&amp;lt;0.001). Additionally, S-TOFHLA was significantly correlated with NVS (p&amp;lt;0.001). The odds of having adequate HL decreased by 94% in caregivers with low acculturation compared to caregivers with high acculturation (95% CI: 83%, 98%, p&amp;lt; 0.001). Conclusion: We show significant differences in HL levels between Hispanic and NHW caregivers of children with newly diagnosed cancer. NVS was correlated with S-TOFLHA and could serve as a rapid assessment of HL in the clinical setting for caregivers. Cancer treatment is complex, involving intensive treatments, enrollment in clinical trials, and requiring advanced caregiver knowledge about the disease. By identifying caregivers with limited HL, we can help them navigate cancer therapy effectively. Future research should test culture and language-appropriate interventions, including the systematic use of teach-back, pictorial instruction, and patient navigation. Effective HL interventions may improve cancer care for underserved children and help mitigate disparities in outcomes. Citation Format: M. Elena Martinez, Paula Aristizabal, Bianca Perdomo, Nassim Durali, Shilpa Nataraj, Jesse Nodora. Health literacy disparities among Hispanic caregivers of children with newly diagnosed cancer [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr B135.

Evaluation of the measurement properties of the Perceived Stress Scale (PSS) in Hispanic caregivers to patients with Alzheimer's disease and related disorders.

The Perceived Stress Scale (PSS) is the most widely used measure of perceived stress; however, minimal psychometric evaluation has been performed among Hispanic respondents, and even less among Hispanic caregivers to persons with Alzheimer's disease and related disorders (ADRDs). Secondary data analysis. New York City, NY, USA. A sample of 453 community dwelling Hispanic caregivers to patients with ADRD. Latent variable models were used to evaluate the PSS. Exploratory and confirmatory factor analyses were used to examine unidimensionality. Differential item functioning (DIF) was examined for age, education, and language using the graded item response model. The factor and bifactor analyses results supported essential unidimensionality of the item set; however, positively worded items were observed using response item theory to be less informative than the negatively worded items. Reliability estimates were high. Salient DIF was not observed for age, education, or language of interview using the primary DIF detection method. Sensitivity analyses using a second DIF detection method identified uniform language-DIF for the item, "In the last month, how often have you felt that you were on top of things?" However, the non-compensatory DIF value was below the threshold considered salient. In summary, the 10-item PSS performed well in a sample of English- and Spanish-speaking Hispanic caregivers to patients with ADRD. Very little DIF, and none of high magnitude and impact, was observed. However, the negatively worded items, perhaps because they are more directly reflective of stress, were more informative. In the context of a short-form measure or computerized adaptive test, more informative items are those that would be selected for inclusion.

Evaluation of measurement equivalence of the Family Satisfaction with the End-of-Life Care (FAMCARE): Tests of differential item functioning between Hispanic and non-Hispanic White caregivers.

Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank. The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively. There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: "The way the family is included in treatment and care decisions." This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction. The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.

Abstract WP437: Where Are We Located Now With Artificial Neural Network? Application of Deep Learning for the Development of Culturally Sensitive Social Support Interventions for Dementia Caregivers

Introduction: Little is known about culturally sensitive interventions for Hispanic and African American family caregivers for persons living with vascular dementia. Applications of deep-learning neural networks have expanded rapidly in recent years, from the first uses in character recognition (1989) to the high-profile AlphaGo (2016) from Google DeepMind. The purpose of this study is to visualize topics from health literature that use deep learning, exploring the techniques’ ability to provide a foundation for developing culturally sensitive Twitter-based social support interventions for Hispanic and African American dementia caregivers. Methods: The corpus of deep learning literature was extracted from 506 studies mentioning deep learning from PubMed library. Text mining was conducted using AutoMap to identify topics and semantic relations from the corpus. Results were visualized as network clusters of frequently applied topics and isolated topics. Results: Literature applying deep learning are limited to 1) imaging and radiology, 2) genomics, 3) cancer (N=506 studies). Topics on dementia and drug discovery were identified as an emerging area for the adaptation of deep learning techniques (Figure 1). Only seven journals in the PubMed library were identified as having published more than 10 studies applying deep learning methods. Conclusion: Despite its popularity in art and science research, deep learning is at an early stage of adoption in health science, largely focused on limited topics, e.g., imaging and disease diagnosis. Applying deep learning methods may provide insights for developing culturally sensitive Twitter-based interventions for Hispanic and African American dementia caregivers. Implementing education on applying deep learning to imaging and vascular-dementia prediction may be a good start to adapt, deepen and broaden the scope of health analytics to improve vascular dementia patients’ health outcomes.

Háblame Bebé: A phone application intervention to support Hispanic children's early language environments and bilingualism.

The early language environments of low-income Hispanic children can be negatively affected when their Spanish-speaking caregivers face racism, assimilation pressure, and/or misinformed advice based on English-only ideologies. This article reports on the design and efficacy of Háblame Bebé, a language-promoting phone application that encourages low-income Hispanic mothers to talk more to their children in their native Spanish with the goals of (1) improving their children's early language environment, (2) promoting bilingualism, and (3) monitoring developmental milestones. The app was designed and tested across three phases as mandated by the US HRSA Bridging the Word Gap Challenge. In Phase I, we developed a curriculum that promotes high-quality language interactions in Spanish and designed the app components. In Phase II, we tested the app with 20 Hispanic mothers (half high school-educated, half college-educated) in a pretest-posttest design in which we examined their language interactions before and after two months of using the app. Preliminary results indicated that mother-child verbal interactions increased, but not always in their native Spanish, and the difference was not statistically significant. Focus group data revealed that many of the mothers had experienced linguistic racism and that tropes surrounding Spanish-speaking identity in the USA needed to be explicitly addressed within the intervention. In Phase III, a sociolinguistic pride component was added and the app was again tested with 12 additional Hispanic mothers (all high school-educated only). This time, a statistically significant increase in mother-child verbal interactions was found. Mothers also reported feeling prouder to use Spanish with their children. These results suggest that Háblame Bebé may be a viable means to reach low-income Hispanic caregivers who face obstacles in accessing health information and/or home-visiting programs for their children.

Screening Instruments for Developmental and Behavioral Concerns in Pediatric Hispanic Populations in the United States: A Systematic Literature Review.

Racial and ethnic disparities in the identification of developmental and behavioral concerns in children are public health problems in the United States. Early identification of developmental delay using validated screening instruments provides a pathway to prevention and intervention in pediatric health care settings. However, the validity of Spanish-language screening instruments, used in clinical settings in the United States, has not been systematically examined. This study aims to review the literature of clinically administered developmental and behavioral instruments with Hispanic caregivers to investigate implementation variation due to language and cultural factors. A systematic literature review using PubMed and PsycINFO was conducted of articles published from January 1, 2006 to December 12, 2017. Abstract, full-text, and critical appraisal resulted in 11 studies that met criteria for inclusion. Five different instruments were used to screen Hispanic or Spanish-speaking caregivers of children younger than 6 years. None of the instruments established validity and reliability apart from Spanish translation. Two studies identified differences in screening results with Spanish-speaking caregivers due to language and 6 described cultural differences that impacted screening implementation. Two studies reported differential item functioning in Spanish-translated instruments. Language and cultural considerations are critical to the administration of valid and reliable screening in pediatric health care settings. Available developmental and behavioral Spanish-language-screening instruments function differently because of both language and culture, suggesting the tools are not as psychometrically valid when administered to Spanish-speaking families. Validation of translated screening instruments is essential to eliminate the possibility of detection bias or misidentification of developmental risk, improving early access to clinical services for Hispanic and Spanish-speaking families.

COMMUNITY-BASED IMPLEMENTATION OF A CAREGIVER EDUCATION PROGRAM, REACH-TX: RACIAL-ETHNIC GROUP COMPARISON

We present the effect of racial/ethnic group difference on the impact of REACH TX on measures of quality of life as implemented by the Alzheimer’s Association North Central Texas Chapter. Five dimensions of quality of life (burden, depression, social support, self-care, and problem behaviors) were assessed at baseline and 6-month follow-up among three racial/ethnic groups of caregivers (White: 1,050; African American: 269; Hispanic: 176). Generalized estimating equations (GEEs) were used to assess racial/ethnic differences in the changes of quality of life after adjusting covariates. Significant interaction effects between racial/ethnic group and time (from baseline to follow-up) were found in burden, depression, and social support. White and Hispanic caregivers showed significant improvements, while the improvement among African American Caregivers was not statistically significant. The disparity in outcomes among diverse racial/ethnic groups in the program suggests the REACH TX intervention would benefit from tailoring interventions for African American caregivers.

SERVING UNDERSERVED VETERANS AND THEIR CAREGIVER: DEVELOPING TAILORED CULTURALLY RELEVANT INTERVENTIONS

Family members of stroke survivors experience high rates of depression and burden. The majority of stroke survivors return to their homes and need assistance to perform activities of daily living. These demands coupled with the lack of preparedness for their new roles lead to a high risk for developing depression and other negative outcomes among caregivers. Studies indicate that Hispanic caregivers report higher levels of depression compared to others. However, no interventions have focused on this population. Our objective is to develop culturally-relevant interventions to help reduce disparities Hispanic Veterans post-stroke and their caregivers. We tailored our Spanish RESCUE intervention for the Puerto Rican population. The goal of the problem-solving telephone support & educational intervention is to reduce caregiver burden and depressive symptoms by teaching them a creative and optimistic approach to solving caregiving related problems. The intervention was developed to reflect specific characteristics of the target population. To enhance the cultural relevance of the intervention, we used recommendations from Key Stakeholders and guidelines from authoritative sources such as: 1) involving persons from the target population in all phases of the project; 2) emphasizing themes valued by the PR culture; 3) assuring that the language and wording of the materials is at appropriate reading level; 4) using certified translators and Spanish-speaking experts, and 5) having Hispanic research members, fluent in Spanish, and knowledgeable about the PR culture conduct the intervention and assessments. The intervention is currently been tested in a RCT.

Development of Pictograms for an Interactive Web Application to Help Hispanic Caregivers Learn About the Functional Stages of Dementia.

Caregivers of persons with dementia need anticipatory guidance about the stages of dementia in order to prepare for the caregiving situations they will face. The study objective was to develop a set of pictograms representing the functional stages of dementia for eventual inclusion in a tailored, educational web application. We used a hybrid iterative participatory design process. A graphic designer prepared prototypes in a flat, minimalistic style. These were then culled and refined based on feedback from 16 Hispanic caregivers in six design sessions in English and Spanish. The resulting 19 pictograms representing the functional stages and substages of dementia were acceptable to and easily comprehended by participants. Short, plain-language captions support comprehension and aid discrimination between similar scenarios. Our participants preferred candid depictions of all aspects of dementia, including bodily functions, but acceptability may vary by population so further testing is warranted prior to deployment with a new population.

Psychometric Properties of a Spanish-Language Version of a Short-Form FAMCARE: Applications to Caregivers of Patients With Alzheimer's Disease and Related Dementias.

Although family satisfaction is recognized as a critical indicator of quality care for persons with serious illness, Spanish-language measures are limited. The study aims were to develop a Spanish translation of the short-form Family Satisfaction With End-of-Life Care (FAMCARE), investigate its psychometric properties in Hispanic caregivers to patients with Alzheimer's disease and related dementias (ADRD; N = 317; 209 interviewed in Spanish), and add parameters to an existing item bank. Based on factor analyses, the measure was found to be essentially unidimensional. Reliabilities from a graded item response theory model were high; the average estimate was 0.93 for the total and Spanish-language subsample. Discrimination parameters were high, and the model fit adequate. This is the first study to examine the performance of the short-form FAMCARE measure among Hispanics and caregivers to patients with ADRD. The short-form measure can be recommended for Hispanics and caregivers to patients with ADRD.

The impact of caregiver health literacy on healthcare outcomes for low income minority children with asthma

Objectives: The aim of this exploratory study was to assess the impact of caregiver health literacy (HL) on health care outcomes for their child with asthma.Methods: Caregiver dyads across two different healthcare delivery systems completed a battery of validated asthma outcome instruments, including the Newest Vital Sign™ as a measure of HL for the caregivers of children ages 7–18 y. Utilization history was obtained through the electronic medical record. Descriptive analysis with bivariate associations was conducted.Results: There was no direct relationship between HL and asthma outcomes in the 34 Hispanic and African American caregiver-child dyads. However, caregiver health literacy was significantly related to language (p = 0.02). African American English-speaking caregivers, seen in an urban emergency department, demonstrated adequate health literacy. Hispanic Spanish-speaking caregivers, seeking care in a mobile asthma van, showed limited health literacy. There was no significant association between caregivers’ HL and routine asthma care visits when language and child age were controlled.Conclusions: Assessing patient factors can identify persons at risk who need additional support to negotiate the healthcare system when providing care for a child with asthma.

Contextual and Cultural Influences on Caregivers of Hispanic Cancer Survivors.

To discuss contextual factors (barriers to accessing health care, immigration issues, minority stress, low education/income, challenging employment environments) and cultural values (familism, espíritu, confianza, marianismo, machismo) of Hispanic caregivers that may influence the caregiving experience. Literature, research. Hispanic caregivers, like non-Hispanic caregivers, experience poor health during caregiving and have unmet needs for information and emotional support. Few evidence-based supportive care interventions are currently available, and more should be developed and tested for this growing population of Hispanic caregivers. Nurses should assess both contextual factors and cultural values as part of treatment planning for quality cancer care.

Twitter Based Social Support for Hispanic and Black Dementia Caregivers

Twitter Based Social Support for Hispanic and Black Dementia Caregivers

Sociocultural Factors Influencing Caregiver Appraisals Following Traumatic Brain Injury

ObjectiveTo investigate the association of the sociocultural variables race/ethnicity, education, and poverty level to caregivers’ positive and negative appraisals following traumatic brain injury. DesignSurvey. SettingCommunity. ParticipantsCaregivers (N=344; 216 white; 69 black; 39 Hispanic) of persons with complicated mild to severe TBI at least 1-year postinjury. InterventionNot applicable. Main Outcome MeasuresModified Caregiver Appraisal Scale (M-CAS); Zarit Burden Interview (ZBI). ResultsBlack caregivers reported lower levels of perceived burden on both the M-CAS and the ZBI. Black and Hispanic caregivers reported more traditional caregiver ideology (caregiving as a responsibility) than did whites. Greater poverty was associated with higher burden on the M-CAS, lower caregiver satisfaction, and less mastery. Higher education was associated with higher burden on the ZBI and with lower caregiver mastery. ConclusionsTreatment professionals should be culturally sensitive to the different perspectives that caregivers may have based on sociocultural factors. Sociocultural factors should be considered in research investigating caregiver outcomes, including appraisals.