White Caregivers Research Articles

Socioeconomic and demographic factors modify observed relationship between caregiving intensity and three dimensions of quality of life in informal adult children caregivers

BackgroundThe relationship between informal caregiving intensity and caregiver health is well-established, though research suggests this may vary by caregiver demographics. The aim of this exploratory study is to assess the association between caregiving intensity and three dimensions of quality of life outcomes, and determine how caregiver sociodemographics change the nature of this relationship among informal adult children caregivers.MethodsUsing the 2011 National Study of Caregiving, associations between caregiving intensity and quality of life were examined in caregivers providing care to an aging parent (n = 1014). Logistic regression was used to model caregiver quality of life on caregiving intensity using an ordinal composite measure of caregiving activities, including Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL), hours per month, and length of caregiving, stratified by race/ethnicity, gender, age, and family income. Odds ratios and corresponding 95% confidence intervals were calculated.ResultsAssociations between caregiving intensity and quality of life varied substantially by race/ethnicity, gender, age, and annual family income. White caregivers were significantly more likely to experience negative emotional burden when providing high intensity care (ADL: 1.92, Hours: 3.23). Black caregivers were more likely to experience positive emotions of caregiving (ADL: 2.68, Hours: 2.60) as well as younger caregivers (Hours: 8.49). Older caregivers were more likely to experience social burden when providing high ADL, IADL, and monthly hours of care.ConclusionsThese findings demonstrate the complex and multi-dimensional nature of caregiving, and emphasize the need to develop approaches that are tailored to the specific health needs of subpopulations of informal caregivers.

Provider use of a participatory decision-making style with youth and caregivers and satisfaction with pediatric asthma visits.

BackgroundWe conducted a randomized controlled trial to test the effectiveness of an asthma question prompt list with video intervention to engage the youth during clinic visits. We examined whether the intervention was associated with 1) providers including youth and caregiver inputs more into asthma treatment regimens, 2) youth and caregivers rating providers as using more of a participatory decision-making style, and 3) youth and caregivers being more satisfied with visits.MethodsEnglish- or Spanish-speaking youth aged 11–17 years with persistent asthma and their caregivers were recruited from four pediatric clinics and randomized to the intervention or usual care groups. The youth in the intervention group watched the video with their caregivers on an iPad and completed a one-page asthma question prompt list before their clinic visits. All visits were audiotaped. Generalized estimating equations were used to analyze the data.ResultsForty providers and their patients (n=359) participated in this study. Providers included youth input into the asthma management treatment regimens during 2.5% of visits and caregiver input during 3.3% of visits. The youth in the intervention group were significantly more likely to rate their providers as using more of a participatory decision-making style (odds ratio=1.7, 95% confidence interval=1.1, 2.5). White caregivers were significantly more likely to rate the providers as more participatory (odds ratio=2.3, 95% confidence interval=1.2, 4.4). Youth (beta=4.9, 95% confidence interval=3.3, 6.5) and caregivers (beta=7.5, 95% confidence interval=3.1, 12.0) who rated their providers as being more participatory were significantly more satisfied with their visits. Youth (beta=−1.9, 95% confidence interval=−3.4, −0.4) and caregivers (beta=−8.8, 95% confidence interval=−16.2, −1.3) who spoke Spanish at home were less satisfied with visits.ConclusionThe intervention did not increase the inclusion of youth and caregiver inputs into asthma treatment regimens. However, it did increase the youth’s perception of participatory decision-making style of the providers, and this in turn was associated with greater satisfaction.

Psychological Distress of Ethnically Diverse Adult Caregivers in the California Health Interview Survey.

This study examined factors associated with psychological distress for culturally diverse family caregivers using a population-based sample. Data were analyzed from the 6634 caregivers of adults (i.e. elderly as well as non-elderly) who self-reported as non-Hispanic White, Mexican, Chinese, or Vietnamese in the 2009 California Health Interview Survey. Simple and multiple regression analyses were conducted to assess the potential influence of race/ethnicity, caregiving context, and social contextual variables on psychological distress. Analyses that included moderators showed that while more education was associated with less distress for White caregivers, it was associated with more distress for Vietnamese and Chinese caregivers. Identifying the caregiving and contextual variables associated with psychological distress is critical for tailoring interventions towards those who need the most help-in this case, possibly less educated White caregivers and more educated Asian American caregivers.

THE EFFECTS OF AN INTENSIVE DEMENTIA CAREGIVER TRAINING COURSE ON CAREGIVER KNOWLEDGE AND PERCEIVED COMPETENCE

Inadequate training and support can lead to higher levels of caregiver stress and burnout, and puts the individual with dementia at an increased risk for adverse health-related outcomes (Schulz & Martire, 2004). We evaluated the effectiveness of an intensive, one-day caregiver training in improving dementia caregiver knowledge and perceived competence. One-hundred sixty-seven caregivers (77% female; 71% >55 years old; 54% White, non-Hispanic; 87% family caregivers) for community-dwelling adults with dementia attended an intensive one-day training (“Caregiver Bootcamp”) led by UCLA experts in dementia care. The bootcamp was organized into interactive didactic sessions, including topics such as home safety, behavior management, care transitions, and stress reduction. Caregivers completed pre- and post- measures of perceived competence (Caregiver Competency Scale), and a knowledge test of dementia caregiving techniques developed for the bootcamp. A survey assessing the overall caregiver experience and satisfaction with the bootcamp was also administered. In addition, caregivers completed a measure of caregiver burden (Zarit Burden Interview-Short Version) prior to the bootcamp. Paired sample t-tests were conducted to compare scores on pre- and post- test measures. After participating in an intensive bootcamp, caregivers’ perceived self-competence [t (104) = 4.00, p < .001] and self-reported knowledge of dementia caregiving techniques [t (76) = 6.59, p <.001] significantly improved. Furthermore, 84% of caregivers rated the bootcamp as “Excellent,” expressing high overall satisfaction with the quality of the program. Non-white and male caregivers reported higher levels of burden compared to white caregivers or female caregivers [t (151) = 1.72, p =.08; t (160) = 2.17, p =.03]. Six months after completing a bootcamp, follow-up survey indicated that attendees’ self-reported knowledge of dementia caregiving techniques continued to improve from pre-test scores [F(1.894, 7.575) = 9.913, p=.008]. An intensive, one-day bootcamp is well-received by participants, and is effective in improving caregiver competence and knowledge. Future work will evaluate whether the effects of intensive caregiver training are sustained over time and its effects on subgroups of caregivers who may be susceptible to higher levels of burden.

TRANSITIONS IN THE DEMENTIA CARE CONTINUUM: OPPORTUNITIES FOR PERSON-CENTERED APPROACHES

A ‘Transitions can be understood as ‘a change from one state or status to another’. Therefore transitions encompass transitions in levels of care and in locations of care, which integrates a psychosocial and a health care service perspective. In this symposium we will present a variety of research, which exemplify these two perspectives. Two presentations address transitions regarding levels of care: The focus of the 1st speaker is on transition being a carer, within the caregiving journey presenting data from 370 family south Asian and white British caregivers; the focus of the 2nd speaker is on transitions over the course of families living with fronto-temporal dementia and how families adapt and cope with transitions in this conditions. Two presentations address transitions regarding location of care: the 3rd speaker will present person-centered approaches from a RCT testing transitional care interventions for persons with dementia, especially those living in highly-disadvantaged US areas. The 4th speaker will present results regarding transitions from nursing homes to hospitals for residents with Ambulatory Care Sensitive (ACS) conditions, with a specific focus on early detection of ACS. The focus of the 5th speaker is on the role of cross-setting communication for people with dementia in facilitating high quality, person-centered transitions, presenting results from a retrospective cohort study (N = 343). Transitions in the Dementia Care Continuum include attention to individuals’ needs and psychosocial contexts. Research about opportunities and challenges for personcentered approaches need to focus explicitly on these transitions.

Characteristics and Correlates of Caregivers' Perceptions of Their Family Members' Memory Loss.

Understanding caregiver's perceptions of their family member's memory loss is a necessary step in planning nursing interventions to detect and address caregiver burden. The purpose of this study was to characterize caregivers' perceptions of their family members' memory loss and identify potential correlates within Leventhal's common sense model (CSM). This secondary analysis used baseline data from a larger randomized controlled trial. Patients with memory loss and their caregivers (N = 83 dyads) from the community were included. The adapted Brief Illness Perception Questionnaire (BIPQ) assessed caregivers' illness perceptions. Eight additional instruments measured correlates within the CSM. Responses were described; multiple linear regression was used to predict BIPQ dimension scores, and logistic regression was used to predict dichotomized BIPQ scores. Most caregivers were female, White, and spouses of the patients; they reported a range of perceptions on the nine BIPQ dimensions. Patients' cognitive function consistently emerged as a significant correlate of caregivers' illness perceptions, explaining the most variance in caregivers' perceived consequences, identity, and treatment control (p < .01). Caregivers' reactions to patients' behavioral symptoms and caregivers' trait anxiety were associated with perceived illness coherence (p < .01). Caregivers with higher severity of daily hassles and White caregivers perceived that their family members' memory loss would last longer (p < .001). Caregivers' perceptions of family members' memory loss varied; distinct dimensions of caregivers' illness perception were associated with a range of clinical and psychosocial factors. This exploratory study demonstrates the complexity of applying the CSM to caregivers of persons with memory loss.

Influence of Religion on Later Burden and Health of New Black and White Caregivers.

Objective: We assessed the relationship between positive aspects of religiosity and reduced stress in caregivers, and negative aspects of religiosity and increased caregiver burden. Method: Using data from the Biopsychosocial Religion and Health Study, we performed multiple linear regression analysis on 584 caregivers. Results: Mental health, but not physical health, was predicted by caregiver burden. Caregivers who viewed God as loving and not controlling and felt a sense of community with their church family had less burden. Caregivers who engaged in negative religious coping had a greater decline in mental health than those who saw God as loving and not controlling and who gave emotional support to others. Discussion: Some aspects of religion appear to play an important role in alleviating the mental stresses of being a caregiver.

Well-being of Sibling Caregivers: Effects of Kinship Relationship and Race.

This study examined whether caregiving has a differential effect on the well-being of sibling caregivers relative to other caregiving groups and whether race moderates this effect. Using the National Survey of Midlife Development in the United States, 631 family caregivers (including 61 sibling caregivers) and 4,944 noncaregivers were identified. Hierarchical regression analyses were conducted to estimate the effect of the caregiver-care recipient relationship and its interaction with race on caregivers' well-being (i.e., depressive symptoms, self-rated health, life satisfaction, and perceived control over life). Caregivers in general reported poorer well-being than noncaregivers, but sibling caregivers were less affected by caregiving than parent or spouse caregivers. Among sibling caregivers, caregiving took a significantly greater toll on non-Hispanic White caregivers than those from minority groups with respect to depressive symptoms and life satisfaction. The findings suggest that the experience of sibling caregivers is significantly shaped by their cultural background.

Developing a Culturally Tailored Palliative Care Program with Guidance from Rural African American and White Community Members: A Program by the Community for the Community (FR461B)

•Gain an understanding of need for cultural tailoring in rural African American and white communities for palliative care (PC) programs.•Hear about a new approach for developing a culturally tailored PC program in collaboration with the community that meets the common and unique needs of African American and white rural elders.•Examine results that are common to both groups and those that are unique to African American or white. A culturally appropriate model of end-of-life care that takes into consideration the diverse cultural preferences of rural, terminally ill African Americans and whites is lacking. To develop a culturally tailored palliative care (PC) program with the guidance of African American and white community members that will meet the common and unique needs of rural elders at end of life. The goal of this second phase of a three-phase study is to gather input from African American and white community members into a future PC program. In the tradition of Community Based Participatory Research (CBPR), a Community Advisory Group (CAG) of community leaders and family members who had recently lost a loved one was formed. The CAG met monthly for a year with the research team and systematically reviewed the qualitative thematic results of the end-of-life care preferences of African American and white caregivers who had participated in focus groups in Phase 1. Based on these preferences, CAG made recommendations for a PC program that would meet the common and unique needs of their communities. Recommendations that were common to both groups include: The Physician should elicit whether family wants to hear about prognosis and treatment and discuss these with compassion and consideration. Recommendations that were unique to African American group include: Physician should respect and state that God or a higher power, and not the physician, determines when the patient will pass. The physician should recognize and appreciate a family’s determination to care for their loved one at home. The family’s pastor is central, and his or her involvement is preferred to that of the hospice chaplain. Developing a culturally tailored PC program in collaboration with the community is feasible and builds trust and ownership. Acceptability of the program will be a hospital-tested program in Phase 3.

Caregiving Practice Patterns of Asian, Hispanic, and Non-Hispanic White American Family Caregivers of Older Adults Across Generations.

This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.

Identifying Sociodemographic Characteristics Associated With Burden Among Caregivers of the Urban Homebound: The Importance of Racial and Relationship Differences.

Limited research has explored whether the burden associated with caring for homebound patients varies across racial groups or by relationship status. We examined these variations for this vulnerable population. Patients self-identified informal caregivers and caregiver burden/depression were assessed using the Zarit Caregiver Burden Scale and the Center for Epidemiologic Studies–Depression scale (CES-D). Forty-nine informal caregivers completed the interview. Mean age was 58 (SD = 14), 78% were female, 37% Black, 35% Hispanic, and 46% had completed high school. Over 60% of caregivers had moderate or severe caregiver burden and 30% had significant depression. White caregivers had greater burden than Black and Hispanic caregivers (p = .02). Mean caregiver burden was higher among spouse/partner caregivers, versus those who identified as children or other family or friends (p = .004). Additional research is needed to better understand the experience of racial and ethnic minorities and spouses in providing informal care to homebound adults.

Sociodemographic Characteristics and Health Status of Asian, Hispanic, and Non-Hispanic White Family Caregivers of Older Adults Across Generations

Using the 2009 California Health Interview Survey, this study examines and compares the sociodemographic characteristics and health conditions of Asian (N = 591), Hispanic (N = 989), and White (N = 6,537) American caregivers of older adults by race/ethnicity and three successive immigrant generations. Second-generation Asian and Hispanic caregivers were the youngest while White counterparts were the oldest. The later the Asian and Hispanic generation, the better their educational attainment, but the poorer their health status. Findings suggest the importance of awareness of generational differences so that social workers can provide culturally and generationally appropriate services to racially/ethnically diverse caregiver populations more effectively.

Race-related differences in the experiences of family members of persons with mental illness participating in the NAMI Family to Family Education Program.

Families play an important role in the lives of individuals with mental illness. Coping with the strain of shifting roles and multiple challenges of caregiving can have a huge impact. Limited information exists regarding race-related differences in families' caregiving experiences, their abilities to cope with the mental illness of a loved one, or their interactions with mental health service systems. This study examined race-related differences in the experiences of adults seeking to participate in the National Alliance on Mental Illness Family-to-Family Education Program due to mental illness of a loved one. Participants were 293 White and 107 African American family members who completed measures of problem- and emotion-focused coping, knowledge about mental illness, subjective illness burden, psychological distress, and family functioning. Multiple regression analyses were used to determine race-related differences. African American caregivers reported higher levels of negative caregiving experiences, less knowledge of mental illness, and higher levels of both problem-solving coping and emotion-focused coping, than White caregivers. Mental health programs serving African American families should consider targeting specific strategies to address caregiving challenges, support their use of existing coping mechanisms and support networks, and increase their knowledge of mental illness.

Psychological distress and psychiatric diagnoses among primary caregivers of children undergoing hematopoietic stem cell transplant: an examination of prevalence, correlates, and racial/ethnic differences

ObjectiveThe aims of the study were to examine the prevalence of self-reported psychological distress, examine the prevalence of interview-rated psychiatric diagnoses, identify correlates of psychological distress and psychiatric diagnosis and examine racial/ethnic group differences on measures of psychological distress among primary caregivers of children preparing to undergo hematopoietic stem cell transplant (HSCT). MethodsCaregivers (N=215) completed the Beck Anxiety Inventory, Beck Depression Inventory (BDI), Impact of Events Scale, and a psychiatric interview assessing major depressive disorder, generalized anxiety disorder and panic disorder. Regression analyses examined correlates of distress and psychiatric diagnosis. Comparisons were made between racial/ethnic groups. ResultsPosttraumatic stress symptoms were reported by 54% of caregivers during the time preparing for the child's HSCT. Twenty-seven percent of caregivers met diagnostic criteria for at least one of the psychiatric diagnoses during this time. Few factors were associated with distress or psychiatric diagnosis, except the child scheduled for allogeneic transplant, being married and prior psychological/psychiatric care. Sociodemographic factors accounted for racial/ethnic group differences, except that Hispanic/Latino caregivers reported higher BDI scores than non-Hispanic white caregivers. ConclusionCaregivers may be at greater risk of posttraumatic stress symptoms than anxiety or depression. Prior psychological/psychiatric treatment is a risk factor for greater psychological distress and psychiatric diagnosis during this time. Racial differences are mostly due to sociodemographic factors.

Latino Alzheimer's caregivers: what is important to them?

Purpose – The purpose of this paper is to describe the perception and psychosocial impact of caregiving for Latino family caregivers of patients with Alzheimer's disease and related dementias and compare them to non-Hispanic (NH) white caregivers. Design/methodology/approach – The paper opted for a survey design using the Screen for Caregiver Burden, Perceived Stress Scale, Short Form 36 Health Survey, Symptom Questionnaire, Center for Epidemiologic Depression, Sense of Coherence, Coping Resources Inventory, and the Personal Resource Questionnaire (PRQ-85). A total of 202 participants with 53 Latino caregivers (majority were Mexican-Americans) and 149 NH white caregivers also completed an in-depth qualitative interview describing their experience as caregivers. Findings – Latino caregivers, as compared to NH white caregivers, have higher subjective and objective caregiver burden and lower general health, social function, and physical function. They also reported higher levels of bodily pain and somatic sy...

Measuring cultural justifications for caregiving in African American and White caregivers.

This report will elucidate the psychometric properties of the Cultural Justifications for Caregiving Scale (CJCS) and evaluate the differences in cultural values and demographic variables among a group of African American and White caregivers. The CJCS measures the cultural reasons for and expectations about providing care to an older relative. CJCS data were collected from 202 adults caring for an older relative with memory loss. The factor structure of the CJCS was analyzed for reliability and its correlation with other measures pertaining to the caregiving experience. Exploratory factor analyses suggested two underlying factors relating to Duty and Reciprocity with high levels of reliability. The two factors showed different correlational patterns with other measures associated with the caregiving experience (CG demographics and well-being). Findings provide further evidence that the CJCS is a reliable measure for use with African American and White caregivers. Moreover, cultural motivations to provide care may differ for ethnically diverse CGs based on religious backgrounds and beliefs about family expectations surrounding the care of loved ones. The application of the CJCS is also discussed.

Latino caregivers are less assertive with family and friends about their child's beverage consumption

Caregiver behavioral skills are key to changing children's eating habits. The relationship between demographic characteristics and caregiver assertiveness with family and close friends regarding their child's beverage consumption were examined with baseline data from an intervention study aimed at reducing sugar‐sweetened beverage (SSB) consumption by pre‐school children. Caregivers of preschoolers (n=472) provided demographic information and completed an Information‐Motivation‐Behavioral Skills measure related to child SSB consumption (IMB‐mCSSB). Caregiver assertiveness was defined with 2 items on the IMB‐mCSSB. Caregivers with high assertiveness indicated that “telling [close friends or family] that I do not want my child to have certain drinks” would be “easy” or “very easy.” Logistic regressions showed that although caregiver age, gender, and food security status were not associated with assertiveness, ethnicity was significantly related (p &lt; .0001). Only 57% of Latino caregivers rated the assertiveness items as “easy” or “very easy” compared to 79% of African American, 73% of West Indian, and 76% of White caregivers. These results suggest that culturally sensitive assertiveness training with Latino caregivers may be a helpful component in interventions aimed at modifying child consumption behavior. Funding: USDA/NRI 2008–55215‐19071

Comparisons Between Hispanic and Non-Hispanic White Informal Caregivers

This study focuses on understanding similarities and differences between non-Hispanic White and Hispanic informal caregivers of those with Alzheimer’s disease. Comparisons take place between caregivers reporting high levels of burden as indicated by the Zarit Burden Inventory. Data suggest similarities and differences between Hispanic ( n = 17) and non-Hispanic White ( n = 17) caregivers in this study in several areas. Hispanic caregivers indicated fewer sources of income, had less investment money for family member’s treatment, reported caregiving as a greater interference with life’s accomplishments, and indicated a lesser percentage of the total care cost provided by the family member. Non-Hispanic White caregivers reported having completed a higher level of formal education and that organized religion’s importance prior to becoming a caregiver was not quite as important as compared with the Hispanic care provider. With current trends, of demographic and cultural changes, it is crucial to fully understand the changing role and needs of both Hispanic and non-Hispanic White caregivers.

Ethnic Differences in Caregiver Quality of Life in Pediatric Asthma

The aim of this study was to determine ethnic and site differences in quality of life (QOL) in a sample of Latino (Puerto Rican [PR] and Dominican) and non-Latino white caregivers of children with asthma in mainland US and Island PR. We also investigated ethnic and site differences in associations between caregiver QOL and indicators of asthma morbidity. Seven hundred and eighty-seven children with asthma (7-16 years of age) and their primary caregivers participated in the study. Primary caregivers completed a measure of QOL, child asthma control, and emergency department utilization, among other measures. Ethnic and site differences were found on total QOL scores (ΔF(1,783) = 29.46, p < .001). Island PR caregivers reported worse QOL scores than Rhode Island (Rl) Latino and non-Latino white caregivers; Rl Latino caregivers reported significantly worse QOL scores than non-Latino white caregivers. In Rl Latino and Island PR children, worse caregiver QOL was associated with asthma that was not in control and with one or more emergency department visits. Latino caregivers may be experiencing a greater level of burden related to their child's asthma than non-Latino white caregivers. Caregiver QOL in pediatric asthma may be a reflection of broader contextual stress that some Latino caregivers experience on a daily basis (e.g., cultural beliefs, acculturation). Future research should continue to investigate mechanisms that explain the burden associated with pediatric asthma in Latino families, as well as whether QOL assessments should consider the impact of everyday stressors on caregiver QOL in pediatric asthma.

Experiences and concerns of family caregivers providing support to people with dementia: A cross-cultural perspective

We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.