Bereavement Adaptation as Deflection Reduction: Bereaved Caregivers Define the Event of Dying

Affect control theory (ACT) has the potential to extend dominant understandings of adaptation to bereavement. Using narratives from bereaved caregivers, we assessed attributions they made about the death of a loved one from cancer. We transformed these attributions into actor-behavior-object events along the evaluation, potency, and activity dimensions of ACT. After creating hypothetical baseline deflections for events, we simulated the attributions as events in INTERACT. We found eight emergent categories of resolutions that caregivers used to make sense of the death: caregivers redefined the event to align with their sentiments about the deceased or the death. We also found racial differences in the attributions. White caregivers were more likely to blame themselves or others for the death of their loved one, while black caregivers were more willing to admit their deceased loved one’s faults. These findings demonstrate how caregivers make sense of their grief in a framework of cultural sentiments and underscore the utility of affect control theory in qualitative and theory-generating research.

Racial Regard and Physical Health Among Low-Income Black Caregivers of Children With and Without Asthma

The purpose of this study was to examine the associations between child health, parent racial regard, and parent physical health in 87 African American and Black parents/caregivers of children with and without asthma from a low-income, under-resourced urban area. Participants completed the Private and Public Regard subscales of the Multidimensional Inventory of Black Identity (MIBI) and 12-item Short Form Health Survey (SF-12). Parents of children with asthma reported having poorer physical health, while those with higher public and private racial regard reported better physical health. The association between public regard and physical health was surpassed by an interaction of child asthma status and public regard: as public regard decreased, so did physical health, but only for parents raising a child with asthma. Findings suggest that the stresses associated with raising a child with chronic illness and perceiving lower public racial regard may together confer additional risk for poor physical health in African American and Black parents.

Falling Between the Cracks: Experiences of Black Dementia Caregivers Navigating U.S. Health Systems

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers’ experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States (U.S.) to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were developed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is “broken.” Gaps in the health system can lead to people [as one caregiver passionately expressed] “falling between the cracks,” in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a “person of color” contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black patients with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.

Does Adult Day Service Use Improve Well-Being of Black Caregivers of People Living with Dementia?

Background and Objectives Despite adult day services (ADS) being the most racially diverse home-and-community based service (HCBS), there is a paucity of research that has examined the impact of ADS on well-being measures among Black caregivers of people living with dementia. To address this gap, this study examined the association between the use of ADS and depressive symptoms among Black dementia caregivers. Research Design and Methods Using baseline data from two behavioral intervention trials: Advancing Caregiver Training (ACT, n=72) and Care of Persons with Dementia in their Environments (COPE, n=63), we conducted ordinary least squares regression to examine the association between ADS use in the past six months and depressive symptoms (n=135). The dependent variable, depressive symptoms, was assessed by the 10-item Center for Epidemiologic Studies Scale (CES-D). The independent variable was assessed by self-report of ADS use in the past six months. Results Nearly 36% of the sample used ADS in the past six months. After controlling for caregiver characteristics associated with depression (burden, social support, self-rated health, caregiving relationship status, years caregiving, religious/spiritual coping and demographic characteristics), caregivers who utilized ADS had a lowered CES-D score (B= -1.97, p=0.03) compared to those who did not use ADS. Discussion and Implications Black dementia caregivers who utilized ADS had lower depressive symptoms compared to those who did not utilize ADS. ADS may be a critical HCBS that can provide relief to Black caregivers. Research is needed to examine additional benefits of ADS use among Black caregivers, and the policy and programming needed to enhance access to ADS.

Black Caregivers’ Perspectives on Racism in ASD Services: Towards Culturally Responsive ABA Practice

Significant racial and ethnic disparities in healthcare and service access exist. In the present paper, we reviewed qualitative studies investigating racism-related experiences of Black caregivers of children with Autism Spectrum Disorder (ASD) in the U.S. healthcare system. Specifically, we examined institutional racism (i.e., systemic racism) and individual racism of Black families when they seek diagnoses and services for their children with ASD. Additionally, we summarized culturally responsive and context-specific practice guidelines to work collaboratively with Black caregivers of children with ASD for Applied Behavior Analysis practitioners.

“Doing Our Part”: What Motivates Black Family Engagement in an After-School Program

Researchers have demonstrated that Black caregivers (a) are more likely than caregivers of any other race to enroll their children in after-school programs, (b) face considerable challenges finding quality after-school programs, and (c) consider family engagement to be a hallmark of quality after-school programs. To date, however, researchers have largely ignored the voices of Black caregivers about what motivates and enables them to engage with their children’s after-school programs. As a result, after-school program staff report continued challenges effectively engaging Black families. The current case study aims to address this gap in the literature using evidence from participant observations, interviews with program staff, and focus groups with caregivers from the Downtown Boxing Gym, a community-based after-school program in Detroit, Michigan that primarily serves Black youth. Results suggest caregivers were largely motivated to engage with the program because of the gains they observed in their children and themselves, causing them to feel thankful and sparking a desire to give back. Caregivers also named specific program practices that made it easier for them to participate, including explicit expectations and requests for family engagement and multiple ways for them to participate. Implications for increasing family engagement at other after-school programs are discussed.

Adult Day Service Use Decreases Likelihood of Depressive Symptoms Among Black Dementia Caregivers

Black Americans are more likely than others to age with Alzheimer’s Disease (AD) in the community and rely on family members for support. Despite reported positive aspects of caregiving, Black caregivers report greater need for daytime respite and caregiving support. Little is known regarding the health-promoting benefits of daytime respite, like adult day services (ADS), among Black caregivers. Using a sample of 190 Philadelphia-area Black caregivers for community-living persons with dementia, pooled from two behavioral intervention trials: Advancing Caregiver Training and Care of Persons with Dementia in their Environments, the study examined the association between ADS use and depressive symptoms. About 36% of the caregivers used adult day services for their family member with AD. Controlling for demographic variables, social support, self-rated health, religious coping, caregiver burden, and number of years caregiving Black caregivers who utilized ADS had lower depressive symptoms (β= -1.60, p<.05) relative not using ADS.

Interest in Supportive Services Among Black Working and Non-Working Caregivers in the Deep South

The current investigation provides information on supportive services caregivers said they would be interested in if they were made available. Participants were recruited from the Birmingham, AL metro area and received a $25 gift card for completing a telephone interview. Of the 38 caregivers enrolled, 18 (47.37%) reported being currently employed and working an average of 33.92 hours per week (range = 5 – 60). Participants were caring for individuals with average scores on the AD8 Dementia Screening Scale of 7.3 and 10.4 on the Clinical Dementia Scale Sum of Boxes (above the cutoffs for probable dementia). Thirty-three caregivers (87%) reported being interested in at least one of the services listed with differences observed for services that would be preferred by working vs. non-working caregivers. These data will be utilized to provide initial support for a multicomponent intervention that may be effective in reducing negative outcomes within Black caregivers.

Triple Jeopardy? Stress Among Dementia Caregivers Through the Lens of Intersectionality

Despite the benefits to economy and public health, caregivers are negatively affected by caregiving activities. Dementia caregivers, compared to other caregivers, are experiencing higher levels of stress, due to reasons such as the care recipients’ changes in personalities and behaviors. Previous studies have documented differences in caregiver stress across gender and racial/ethnic groups. However, few studies have looked into caregiving differences within both gender and race/ethnicity through an intersectionality framework. This paper seeks to explore what are the differences in caregiving stress across the intersectionality of race and gender. Using Round 5 and Round 7 of NSOC and NHATS data, we examined differences in caregiver stress across and within different gender and racial/ethnic groups in terms of financial, emotional, and physical stress. 1,206 caregivers were included with 61% female, 50% White, and 32% Black caregivers. Logistic regression results indicate that female is less likely to have financial stress, but more likely to experience emotional stress. Compared to White, Black caregivers are worse off financially but better off physically. Both Black and other racial/ethnic caregivers are less likely to have emotional stress. Within the intersectionality framework, compared to White female, Black male are 3.4 times more likely to experience financial stress, all the other groups are 38%-71% less likely to have emotional stress, and Black female are 53% less likely to have physical stress compared to White female. The findings highlighted that in order to develop more effective interventions or policies, unique areas are to be focused for different population subgroups.