Hispanic Family Caregivers Research Articles

CAREGIVERS’ INTERACTIONS WITH HEALTH CARE PROVIDERS AND THEIR WELL-BEING BY RACE AND ETHNICITY AND GENERATION

Abstract Black and Hispanic family caregivers often face higher levels of care demands than White caregivers, due to factors such as limited resources, cultural differences, and systemic and structural inequalities. Family caregivers from different generations (Baby Boomer vs. Generation X & Millennial ) may approach and experience caregiving process and its health effects to a different extent. Caregivers often interact with healthcare providers on behalf of their care recipients, and these experiences can vary based on caregiver background (race and ethnicity and generation). The current study aimed to explore these interactions and their impact on caregivers’ well-being using nationally representative data from the National Study of Caregiving (NSOC, round 11 (N=1,455; 418 Black caregivers, 926 Non-Hispanic White caregivers, and 111 Hispanic caregivers)). Most caregivers were adult children (70%) and female (70%), with approximately 68% were from the baby boomer generation. While Black and Hispanic caregivers were significantly less likely than White caregivers to communicate with medical providers (χ2(df=2)=12, p<.001), baby boomer caregivers provided more assistance with speaking to medical providers than caregivers from younger generations (χ2(df=1)=4, p<.05). Our regression results indicate that Hispanic caregivers who had more frequent communication with medical professionals reported more depressive symptoms and poorer health, while Black caregivers who rarely communicated with providers reported worse outcomes. Future research should examine the nature and quality of these interactions with healthcare providers to improve caregivers’ well-being.

PERSPECTIVES OF CAREGIVERS TO BLACK AND HISPANIC PERSONS LIVING WITH DEMENTIA (PLWD) ABOUT END-OF-LIFE COMMUNICATION

Abstract Black and Hispanic Persons Living with Dementia (PLWD) heavily rely on home healthcare to remain comfortably in their own home, even at the end of life. Despite growth in use of hospice in the U.S., research demonstrates persistent racial differences in utilization of hospice - a key indicator of high-quality end of life care. This is particularly relevant among older Black and Hispanic PLWD who experience additional burdensome interventions at the end of life which often run counter to their goals of care. This study examined perceptions of caregivers to Black and Hispanic PLWD regarding discussions with home healthcare nurses about end-of-life communication and transitions to hospice. We conducted semi-structured interviews with 19 Black and Hispanic family caregivers of PLWD. Interviews were recorded, transcribed, translated and analyzed using conventional content analysis. Results showed that Black and Hispanic caregivers of PLWD do not prioritize aggressive and burdensome care at the end of life, had low expectations of the healthcare system to support their needs and preferences at the end-of-life, and were willing to discuss and accept hospice if discussions were transparent about resources and entitlements; acknowledged the strengths of the PLWD/caregivers; involved positive and respectful communication with families during a home visit; acknowledged respect for their social communities and home environment; sat down during a home visit and recognized the role of religion at the end-of-life. Implications to improve care include incorporating family caregiver discussions, identify social determinants of health, and address the role of religion in future interventions.

Heuristic evaluation and usability testing of a functional dementia stages app for Hispanic family caregivers

AbstractBackgroundHispanic family caregivers of persons with Alzheimer’s disease and other dementias are not getting the anticipatory guidance they need about how functional abilities will change as dementia progresses. Existing informational resources are overwhelming to navigate and written at a high reading level. Furthermore, professional assessment of functional abilities is not universally available. Innovative, tailored approaches are needed. Our aim was to develop and test a mobile application, the Interactive Functional Assessment Staging Navigator (I‐FASTN), to support Hispanic family caregivers’ assessment of care recipients’ functional stage of dementia in either English or Spanish.MethodWe conducted heuristic evaluation with informatics experts (N = 5, English only) and usability testing with caregivers (n = 10 English, n = 10 Spanish). Participants attempted a series of tasks with the app using a think‐aloud protocol and then rate the usability of the app using mobile app heuristics (experts) and two usability instruments (caregivers). Sessions were recorded and transcribed. For heuristic evaluation, we tabulated the number of usability problems by category: cosmetic, minor, major, and catastrophic. For usability testing, recordings, notes, and transcripts were content analyzed to extract usability problems, suggestions for improvement, desired app features, and other feedback.ResultRefinements to the app were made after each of the five evaluations to address the problems encountered. Caregivers’ mean usability scores were high (4.6 and 4.7 out of 5.0), reflecting good usability overall. Chief usability problems were a confusing tutorial and difficulty finding the app’s side menu. These will be addressed by creating a video tutorial and moving all menu items to the home screen. The app was very well received by caregivers, who indicated that the concise, illustrated content met their informational needs. However, analog alternatives are still needed by caregivers unaccustomed to using apps as they had difficulty moving on from even the simplest screens (see Figure 1a).ConclusionCaregivers are not receiving informational support in a way that meets their needs. The focus should be on providing concise information that addresses the practical aspects of caregiving, tailored to the care recipient’s functional stage.

Functional Dementia Stages App for Hispanic Family Caregivers: Heuristic Evaluation and Usability Testing.

Hispanic family caregivers of persons with dementia are not getting the anticipatory guidance they need about how functional abilities will change as dementia progresses. Existing informational resources are overwhelming to navigate and written at a high reading level. Furthermore, professional assessment of functional abilities is not universally available. Innovative, tailored approaches are needed. Our aim was to develop and test a mobile application (app), the Interactive Functional Assessment Staging Navigator (I-FASTN), to support Hispanic family caregivers' assessment of care recipients' functional stage of dementia in either English or Spanish. We conducted heuristic evaluation with experts (N = 5) and usability testing with caregivers (N = 20). Chief usability problems were a confusing tutorial and difficulty finding the app's side menu. The app was well-received by caregivers, who indicated that the concise, illustrated content met their informational needs. However, analog alternatives are still needed by caregivers unaccustomed to using apps. [Journal of Gerontological Nursing, 49(7), 9-15.].

Comprehensive Understanding of Hispanic Caregivers: Focus on Innovative Methods and Validations.

Alzheimer's disease (AD) and Alzheimer's disease-related disorders (ADRD) are late-onset, age-related progressive neurodegenerative disorders, characterized by memory loss and multiple cognitive impairments. Current research indicates that Hispanic Americans are at an increased risk for AD/ADRD and other chronic conditions such as diabetes, obesity, hypertension, and kidney disease, and given their rapid growth in numbers, this may contribute to a greater incidence of these disorders. This is particularly true for the state of Texas, where Hispanics are the largest group of ethnic minorities. Currently, AD/ADRD patients are taken care by family caregivers, which puts a tremendous burden on family caregivers who are usually older themselves. The management of disease and providing necessary/timely support for patients with AD/ADRD is a challenging task. Family caregivers support these individuals in completing basic physical needs, maintaining a safe living environment, and providing necessary planning for healthcare needs and end-of-life decisions for the remainder of the patient's lifetime. Family caregivers are mostly over 50 years of age and provide all-day care for individuals with AD/ADRD, while also managing their health. This takes a significant toll on the caregiver's own physiological, mental, behavioral, and social health, in addition to low economic status. The purpose of our article is to assess the status of Hispanic caregivers. We also focused on effective interventions for family caregivers of persons with AD/ADRD involving both educational and psychotherapeutic components, and a group format further enhances effectiveness. Our article discusses innovative methods and validations to support Hispanic family caregivers in rural West Texas.

Applying Participatory Design Mixed-Methods Approaches to Refine Twitter-Based Social Support Interventions for African Americans and Hispanic Family Caregivers of Persons with Dementia.

We applied mixed-methods to refine our first version of the Twitter message library (English 400, translated into Spanish 400) for African Americans and Hispanic family caregivers for a person with dementia. We conducted a series of expert panels to collect quantitative and qualitative data using surveys and in-depth interviews. Using mixed methods to ensure unbiased results, the panelists first independently scored them (1 message/5 panelist) on a scale of 1 to 4 (1: lowest, 4: highest), followed by in-depth interviews and group discussions. Survey results showed that the average score was 3.47, indicating good to excellent (SD 0.35, ranges from 1.8 to 4). Quantitative surveys and qualitative interviews showed different results in emotional support messages.

Application of Machine Learning Techniques to Examine Social Service Needs Among Hispanic Family Caregivers of Persons with Dementia.

We applied machine learning algorithms to examine the relationship between demographics and outcomes of the social work services used by Hispanic family caregivers of persons with dementia recruited for a clinical trial in New York City. The social work service needs were largely concentrated on instrumental support to gain access to the healthcare system rather than other concrete services (e.g., housing or food programs) or to address psychological needs among the caregivers with relatively higher income. A finding from the machine learning approach was that among those who receive medical-related social work services, frequent users (≥10 times) with high family friend support(>4) were more likely than frequent users without such support to have their issues resolved (Accuracy: 81.9%, AUC: 0.82, F-measure: 0.86 by J48). Even though half of the participants received social work services multiple times, the needs of the caregivers remained unmet unless they sought social work services frequently (more than ten times).

Stress-Busting Program for Family Caregivers: Validation of the Spanish version using biomarkers and quality-of-lifemeasures.

Hispanic family caregivers of people with dementia experience higher levels of stress compared to non-Hispanic white caregivers. Long-term stress causes depression, caregiver burden, cellular aging, and dysregulation of the immune, nervous, and endocrine systems. The purpose of this study was to determine the validity of the Spanish version of the English Stress-Busting Program (SBP) for Family Caregivers by determining changes in quality-of-life measures and biomarkers. Thirty-six caregivers completed the SBP in the language of their choice (14 Spanish-speaking Hispanics [HS], 8 English-speaking Hispanics [HE], and 14 non-Hispanic English [NHE] speakers). Quality-of-life measures included the Perceived Stress Scale, the Screen for Caregiver Burden, and the Center for Epidemiologic Studies Depression Scale. Assessment of oral health and immunity included salivary flow rate, pH, buffer capacity, total protein, and secretory immunoglobulin A (sIgA). Indicators of stress (salivary cortisol), inflammation (C-reactive protein), and cellular aging (leukocyte telomere length) were assessed. Following completion of the SBP, the Spanish-speaking group had less depression and caregiver burden along with improved oral health and reduced cellular aging. When comparing baseline values to post-intervention, all three groups showed significant improvement in subjective caregiver burden. When the data from all three groups were combined, biomarkers that showed improvement after nine weeks of SBP included the stress hormone cortisol, salivary pH, and leukocyte telomere length. The results indicate that the Spanish SBP reduces caregiver stress as assessed by quality-of-life indicators and biomarkers. The Spanish SBP can help to mitigate health disparities in Hispanic Spanish-speaking caregivers.

Helping Hispanic Family Caregivers of Persons With Dementia "Get the Picture" About Health Status Through Tailored Infographics.

Background and ObjectivesCaregivers need to understand their health status and the disabilities of the care recipient to engage in effective health management. Infographics tailored with personal health data are a promising approach to facilitating comprehension, particularly for individuals with low health literacy/limited English proficiency. Such approaches may be especially important for dementia caregivers given the high care burden.Research Design and MethodsGuided by the Health Belief Model and the Data-Frame Theory of Sensemaking, we conducted iterative participatory design sessions with Hispanic family caregivers (N = 16) of persons with dementia. We created multiple prototype infographic designs to display scores on validated instruments of topics such as caregiving burden, overall health, and psychological distress. We retained and refined designs participants judged to be easily comprehensible. Analysis focused on identifying the graphical elements that contributed to the comprehensibility of designs and on evaluating participants’ reactions to the designs.ResultsSuccessful infographics used intuitive scaling consistent with caregivers’ perspective of dementia as inevitable decline. Participants reacted to infographics by describing the self-management actions they would take to address the health issue at hand.Discussion and ImplicationsTailored infographics supported caregivers’ comprehension of their health status and served as cues to engaging in self-management. As such, they should be presented in the context of informational support that can facilitate selection of appropriate next steps. This can mitigate the potential mental and physical health consequences of caregiving and enable caregivers to continue to care for their relatives with dementia with less damage to their own well-being.

Information, communication, and online tool needs of Hispanic family caregivers of individuals with Alzheimer’s disease and related dementias

ABSTRACTPurpose: To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer’s Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. Methods: We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings. Four investigators analyzed transcripts of audio recordings with a coding framework informed by several conceptual models. Results: Participants had an average age of 59.7 years, were mostly female (79.2%), and had cared for a family member with ADRD for an average of 6.5 years. All participants accessed the Internet at least once a week with 75% ≥ daily. Most used the Internet to look up health information. All participants reported caregiver attributes including awareness of the disease symptoms or behaviors. The majority reported information needs/tasks (91.7%), communication needs/tasks (87.5%), and need for online tools (79.2%). Conclusion: Hispanic caregivers of individuals with ADRD reported key information and communication needs/tasks. Only Spanish-speaking participants reported Internet and technology use deficits suggesting the requirement for further technology support. Data show a need for online tools to meet the needs of caregivers.

CAREGIVING FOR GRANDCHILDREN AND DEMENTIA CAREGIVING: NOT THAT DIFFERENT AMONG HISPANICS

Hispanic older adults assuming caregiving roles continue to increase in unprecedented numbers. Development of programs to assist these caregivers to manage their stress and the demands placed on them has also increased. However, the vast majority of these programs are developed focusing more on the specific needs and characteristics of the care-recipients than on caregiver commonalities determined by cultural values. At the core of Hispanic culture are: Familismo, collectivism, personalismo, marianismo, and respeto. We aimed to compare the experience of older Hispanic family caregivers of relatives living with Alzheimer’s disease or related dementias (ADRD), and Hispanic grandparents caring for their grandchildren as a result of parental substance abuse disorders. We conducted a content analysis of qualitative ethnographic interviews of these two populations of caregivers. While the realities of daily caregiving duties were of different nature (dementia vs. childrearing), regardless of care-recipient, caregivers provided narratives supporting the themes: duty to family first, sense of satisfaction, willingly sacrificing, sense of purpose, physically exhausting, emotionally draining, financially straining, role challenges, role captivity, legal stressors, fear, and major stressor. More commonalities than differences were found. Caregivers differed in the root cause of fear (institutionalization vs. children placement in foster care), and the major stressor in their lives. For grandparents the stressor was the perceived or actual continued parental substance abuse. In addition to culturally congruent evidence-based programs to assist Hispanic caregivers to manage their levels of stress, urgent policy changes are needed to support Hispanic family caregivers regardless of age /type of care-recipient.

Characteristics and mental health of Hispanic dementia caregivers in New York City.

Dementia prevalence and related caregiving burden are increasing, particularly among Hispanics. We studied the characteristics and mental health of Hispanic caregivers in New York City. We recruited 139 Hispanic family caregivers. We collected data on sociodemographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than US$30 000 a year. In multivariate analyses with linear regression, lower satisfaction with social networks was associated with higher caregiver burden and a greater number of depressive symptoms. Higher dementia severity was associated with higher caregiver burden, while higher caregiver comorbidities were associated with higher depressive symptoms. Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers.

A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America

Background: Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decision control at the end of life among Hispanics. Aims: To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Hispanic Latin American and Hispanic American caregivers. Design: We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decision control were evaluated using the Control Preference Scale. Caregivers’ and patients’ sociodemographic variables, patient performance status, and Hispanic American patient acculturation level were also collected. Participants: A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results: Caregiver preference of patient’s decision control was passive, shared, and active for 10 (11%), 45 (52%), and 32 (37%) Hispanic American caregivers and 54 (19%), 178 (62%), and 55 (19%) Hispanic Latin American caregivers (p = 0.0023), respectively. Caregiver acculturation level did not affect the preferences of the Hispanic American sample (p = 0.60). Conclusions: Most Hispanic family caregivers preferred the patient to make shared decisions. Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role. Acculturation did not influence the preferences of Hispanic American caregivers.

The negative impact of global perceptions of and daily care-related family conflict on Hispanic caregivers: Familism as a potential moderator

Objectives: Using selected concepts from Pearlin's care giving stress model and incorporating a daily stress-reactivity perspective, the current study surveyed Hispanic family caregivers (HCGs) to: (a) document the occurrence of family disagreements regarding care; (b) examine the impact of family disagreements regarding care on HCGs’ emotional/physical well being; and (c) determine the moderating role of familism – whether strong familism beliefs buffer or exacerbate the negative impact of family disagreements on HCGs. Methods: Participants (n = 67) reported their daily experiences of family disagreements regarding care, depressive symptoms, feelings of burden, and physical health symptoms on eight consecutive survey days; and, in a separate survey, reported their global perceptions of family disagreements regarding care and their familism beliefs. Results: Multilevel-modeling indicated (a) a significant link between global perceptions of family disagreement regarding care and greater depressive symptoms, feelings of burden, and physical health symptoms and (b) significant moderating (i.e., exacerbating) effects of familism at the daily level suggesting that HCGs with stronger familism beliefs are more reactive to daily care-related family disagreement occurrences. Conclusions: The findings from the current study suggest that family disagreement regarding care is a salient aspect of the context of care giving for HCGs, and is linked to depressive symptoms, feelings of burden, and physical health symptoms. Familism may play an exacerbating role in this link. Interpretations of the results and implications for research and intervention are offered.

Data collectors’ field journals as tools for research

With rising numbers of families giving care to elderly loved ones, novel methods and sources of data need to be used to obtain comprehensive information about family caregiving patterns. The purpose of this paper is to present the interviewers' reflective journals as a source of rich data. Data collectors interviewed Hispanic family caregivers as part of a quantitative study of caregiving patterns. The stories derived from the personal journals brought to life three themes: caregiving as responsibility; creativity in giving care; and resistance to delegating tasks. Well-written journals have the potential of enhancing the interpretation of data collected by other means and of raising the quality of interviews and data through introspection and cultural understanding of the caregiving reality.

Reaching the Heart of the Caregiver

Rapidly increasing numbers of Spanish-speaking Hispanic elders portend similar increases in dementing disorders among this group; this, in turn, points to increasing numbers and challenges among the family caregivers (Janevic & Connell, 2001; U.S. Department of Commerce, 1996). Successful programs have been developed to equip non-Hispanic family members to effectively assume the caregiving role. This article reports on preliminary efforts to transform one such psychoeducation program into the “Cuidando con Respeto” program, a culturally appropriate, Spanish language program for Hispanic family caregivers. Principles of development, results from the prototype program, and future evaluation developments are presented.

A Psychoeducational Intervention to Reduce Distress in Hispanic Family Caregivers

The purpose of this study was to determine the feasibility of offering a psychoeducational intervention, in a group format, to Hispanic/Latino family caregivers of dementia victims. The final sample size was 70 primary caregivers who volunteered to participate in the study: 43 were in the intervention program and 27 were on a waiting list for 3 months. Pre/post comparisons were made between those participating in the specially designed culturally sensitive 8-week class (that taught several specific cognitive and behavioral skills for coping with the frustrations associated with caregiving) and those who remained on the waiting list for that same time period. Those in the class reported significantly fewer depressive symptoms, and showed a trend for increased control of feelings of anger and frustration, compared to those on the waiting list, who did not improve on any measure. Limitations of the study include lack of random assignment, absence of systematic follow-up, and unavoidable use of measures not designed for, or normed with, Hispanic caregivers. Nevertheless, results support the feasibility of providing “coping classes” (in Spanish) to distressed caregivers, and encourage further research, with more appropriate and sensitive measures, to assist this distressed population in their coping efforts.

Hispanic caregivers of older adults with dementia: Cultural issues in outreach and intervention

Ethnic minorities, particularly the elderly, have been noted to underutilize health care services and programs. Recent studies have illustrated that Alzheimer’s support services for Hispanic family caregivers are needed and can be developed within Hispanic populations when ethnocultural factors are integrated into the outreach and intervention plans. This paper provides background material on the issue of barriers to the utilization of services by Hispanics. Family members suggest methods for conducting culturally relevant outreach. A description of currently available intervention strategies is also provided, including respite care, support groups, and psychoeducational classes.