Emotional and physical health of informal caregivers of residents at the end of life: the role of social support.

OBJECTIVES: The objectives of this study were to examine the relationship between selected decedent and caregiver characteristics, facility-related perceptions, and emotional and physical health of 434 informal caregivers (94% family) of recently deceased residents of residential care/assisted living facilities and nursing homes. We also examined potential mediating effects of social support (informal, staff, and spiritual). METHODS: We analyzed data using linear mixed models. RESULTS: Among caregivers, younger age, female gender, more education, financial burden, other dependents, poorer perceptions of care, and more care involvement were associated with more emotional strain. More staff support also was associated with more emotional strain and partially mediated the relationship between having a trusted staff member and emotional strain. Characteristics associated with poorer physical health included unemployment, financial burden, poorer physician communication, and trusted staff member. Informal social support was directly related to better physical health and mediated the relationships between physical health and both physician communication and financial burden. DISCUSSION: Many characteristics related to end-of-life caregiving outcomes in long-term care are consistent with community-based studies, suggesting that end-of-life caregiving outcomes in long-term care are not markedly different than in other settings. However, the role of staff support may either facilitate or complicate emotional strain and merits additional study.

Characteristics associated with mobility limitation in long-term care residents with dementia.

This article describes the prevalence, assessment, and treatment of, as well as characteristics associated with, mobility limitation in 343 residents with dementia in 45 assisted living facilities and nursing homes. Overall, 89% of residents had some degree of mobility limitation. Mobility limitation was associated with fewer behavioral symptoms, low fluid intake, professional assessment, and professional and informal treatment.

Families filling the gap: comparing family involvement for assisted living and nursing home residents with dementia.

PURPOSE: The purpose of this study was to compare the sociodemographics, self-rated health, and involvement levels of family caregivers of residents with dementia in residential care/assisted living (RC/AL) versus nursing home settings. DESIGN AND METHODS: We conducted telephone interviews with the family caregivers most involved with 353 residents of 34 residential care and 10 nursing home facilities. We measured involvement by caregiver self-report of monthly out-of-pocket spending, involvement and burden ratings, and the frequency of engaging in eight specific care activities. Open-ended questions elicited areas in which caregivers preferred different involvement and ways the facility could facilitate involvement. RESULTS: Nursing home caregivers rated their health poorer than RC/AL caregivers, but there were no sociodemographic differences between the two. RC/AL caregivers rated both their perception of involvement and burden higher and engaged more frequently in monitoring the resident's health, well-being, and finances than did nursing home caregivers, although the reported time spent per week on care did not differ. IMPLICATIONS: RC/AL and nursing home caregivers to residents with dementia may tailor their care to fit the needs of the resident and setting. Results are discussed in relation to the Congruence Model of Person-Environment Fit.

Effect of race on cultural justifications for caregiving.

OBJECTIVE: Our objective in this study was to explore the effects of caregiver characteristics on cultural reasons given for providing care to dependent elderly family members. METHODS: The sample included 48 African American and 121 White caregivers. Using multivariate analyses, we used caregiver characteristics (e.g., race, gender, education) to predict scores on the Cultural Justifications for Caregiving Scale (CJCS). RESULTS: Confirmatory factor analysis showed that the CJCS was appropriate for both African American and White caregivers. African Americans had stronger cultural reasons for providing care than Whites, education levels were inversely related to CJCS scores, and the influences of gender and age on cultural reasons were moderated by race. Compared to females, African American males had lower CJCS scores, whereas White males had higher CJCS scores. Younger as compared to older White caregivers had higher CJCS scores. DISCUSSION: This study supports the long-standing cultural tradition of African American families providing care to dependent elders. Cultural reasons for caregiving need to be interpreted within the context of race and gender socialization. Social roles, such as husband or wife, son or daughter, can also help determine how individuals within a particular cultural group experience cultural expectations and obligations. Information from this study can inform culturally appropriate caregiving interventions.

Recruitment and retention strategies for longitudinal African American caregiving research: the Family Caregiving Project.

OBJECTIVE: This article provides a detailed discussion, guided by a culturally competent approach, on recruitment and retention strategies used to study caregiving to older dependent elders in African American families. METHODS: The study (lasting from 1995 through 2000) included collecting three waves of data, 9 months apart, among 202 caregiving units (containing a maximum of three caregivers per unit). RESULTS: Four key strategies were identified as useful in recruiting and retaining the sample: (a) assigning the same interviewers to communicate with and interview study participants for each wave of data collection, (b) ensuring that all interviewers are knowledgeable of possible family dynamics and social issues within the African American community (e.g., access to health care, income and education issues, and discrimination), (c) providing a mechanism by way of a toll-free number for all participants to contact the project staff at the participant's convenience, and (d) allowing flexibility in scheduling and rescheduling interviews at the participant's convenience. DISCUSSION: Researchers need to acquire knowledge and develop skills that will foster culturally competent approaches when studying diverse cultural groups, which involves incorporating the beliefs, values, and attitudes of a cultural group in every phase of the research project, from conceptualization to interpretation of findings. Additionally, a genuine interest in, knowledge of, and respect for the population are necessary to help improve participant involvement in longitudinal research among African American caregivers.

Can culture help explain the physical health effects of caregiving over time among African American caregivers?

OBJECTIVES: The purposes of this study were to longitudinally examine the health outcomes of 107 African American caregivers who provided care to their elderly dependent family members and to determine the role of culture in predicting health outcomes. METHODS: With use of the stress and coping model of Pearlin and colleagues (1990) as a guide, the direct effects of background characteristics and stressors and the direct and mediating effects of resources (including culture) on two caregiver health outcomes (i.e., psychosocial health and physical functioning) were analyzed with hierarchical multiple regression analyses. RESULTS: Similar to other studies, we found that combinations of caregiver background characteristics, stressors, and resources at wave 1 had direct effects on African American caregivers' health outcomes at wave 3. Unlike previous studies, where culture was not measured, we found that cultural beliefs and values did help to explain health outcomes for African American caregivers. Specifically, culture justifications for caregiving, baseline psychosocial health, and caregiving mastery predicted wave 3 psychosocial health. Caregiver education, number of morbidities, and physical functioning at wave 1 were associated with physical functioning at wave 3. DISCUSSION: The findings from this study have implications for future studies, particularly in regard to cultural beliefs and values among African American caregivers.

Systems of social support in families who care for dependent African American elders.

PURPOSE: This study examined connections (linking, compensatory, or none) between three systems of social support (informal, church, and formal). Predictors of each system were also examined. DESIGN AND METHODS: A community sample of 187 caregivers who provided care to older African American participants in the Duke Established Populations for Epidemiological Studies of the Elderly was used. Multiple regression analyses were used to examine relationships between systems of social support as well as to determine predictors of each social support system. RESULTS: Findings provide evidence for linking connections between systems of support: Informal and formal supports were linked, and church support and formal support were linked. The relationship of need as positively related to social support was limited to the care recipient's number of instrumental activities of daily living limitations being associated with formal support. Level of education was also associated with use of formal support. IMPLICATIONS: Cohesive family networks and network size are important factors that help determine what support caregivers receive. African American caregivers may be at risk for negative health outcomes because they are less likely to use formal support as care recipients' activities of daily living limitations increase.

Correlates of sleep behavior among hemodialysis patients. The kidney outcomes prediction and evaluation (KOPE) study.

BACKGROUND: Given the importance of sleep to overall physical and mental well-being, we sought to identify the correlates of seven sleep disturbances in a cross-sectional study of a biracial population of male and female patients treated with hemodialysis. METHODS: Univariate and multivariate analyses of a cohort study of adult patients with end-stage renal disease. Demographic, psychosocial, clinical, and health and physical functioning variables were included. RESULTS: Waking up during the night (57%) and waking up too early (55%) were the most commonly reported sleep problems. Multivariate analyses consistently indicated that levels of pain, depressive symptoms, and physical functioning were consistently associated with the seven sleep disturbances. CONCLUSION: Sleep disturbances are common in patients with end-stage renal disease. Physical and mental well-being were consistently related to the seven sleep disturbances.