Tele-Savvy Outcomes of Non-Hispanic Black American and White Caregivers.

BACKGROUND AND OBJECTIVES: Tele-Savvy is a synchronous/asynchronous psychoeducation program for caregivers of community-dwelling persons living with Alzheimer's disease and related dementias (ADRD) designed to increase caregivers' competence and confidence (mastery) in caregiving. Its overall efficacy was tested in a randomized controlled trial. RESEARCH DESIGN AND METHODS: This secondary data analysis examined the caregiver mastery and psychological health (i.e., perceived stress, depressive symptoms, and burden) outcome of 153 non-Hispanic Black American and White caregivers (31 non-Hispanic Black American and 122 White caregivers) from baseline to 6 months postintervention. Given the difference in the sample sizes of Black and White caregivers, a descriptive post hoc subgroup analysis was conducted of 21 non-Hispanic Black American and 20 White adult children and grandchildren caregivers. RESULTS: In the overall sample, Black American caregivers demonstrated higher levels of mastery and lower levels of distress than White caregivers at baseline and across all time points. Over time, White caregivers, but not Black American caregivers, experienced significantly improved levels of mastery and significantly lowered levels of depression. Within the subgroup analysis, except for a moderate effect size in the management of situation scores over time among Black American adult children caregivers, similar results were obtained. DISCUSSION AND IMPLICATIONS: The findings highlight the strengths and shortcomings of the Tele-Savvy program in improving caregiver mastery and reducing negative psychological health outcomes. Intentionally tailoring the Tele-Savvy program to certain racial and caregiving groups may hold promise in meeting the needs of more ADRD caregivers. CLINICAL TRIAL REGISTRATION: NCT03033875.

Evaluating the Dyadic Benefits of Early-Phase Behavioral Interventions: An Exemplar Using Data from Couples Living with Parkinson's Disease.

BACKGROUND AND OBJECTIVES: There are a growing number of early-phase (i.e., Stage I, NIH Stage Model) interventions targeted at family care dyads navigating chronic health conditions in older adults. Currently, benefits of these interventions are often evaluated for older adults and their family care partners separately, even when controlling for interdependence. Without understanding benefits (and potential harms) for dyads as a whole, understanding of program impact is incomplete. Moreover, few health behavior interventions involving dyads include relational measures to ensure no unintended consequences for the dyad or account for within-dyad pre-test risk level. RESEARCH DESIGN AND METHODS: We used secondary data from a quasi-experimental trial involving 39 couples in which one member of the dyad was living with Parkinson's Disease as an exemplar demonstration of three proposed approaches: an above-zero approach, a pre-test risk status approach, and an expanded pattern analysis matrix approach. RESULTS: Approaches provided evidence for dyadic benefits of the intervention compared to the wait-list comparison condition, but carry different assumptions that did not always categorize dyads similarly. DISCUSSION AND IMPLICATIONS: Implications of using each approach and selecting different benchmarks for defining success are discussed. The descriptive approaches proposed provide rationale for more intentional evaluation of small-sample, early-phase dyadic interventions.

The Effect of Tele-Savvy on Sleep Quality and Insomnia in Caregivers of Persons Living with Dementia.

Introduction: Sleep disturbance is prevalent in caregivers of persons living with dementia (PLwD). Tele-Savvy, a 7-week virtual psychoeducational intervention, enhances caregivers' competence and self-care, and reduces depression. While not explicitly designed to do so, Tele-Savvy can potentially improve caregivers' disturbed sleep. The present study aimed to examine the longitudinal effects of Tele-Savvy on caregivers' sleep quality and insomnia. Methods: This was a secondary data analysis of a 3-arm randomized control trial [Tele-Savvy (active treatment), Healthy Living (attention control), and usual care (waitlist control)]. Multilevel mixed modeling with intent-to-treat principles tested for group, time, and group-by-time effects. Effect sizes were estimated for all changes from baseline to the initial 6-month post-intervention point. Following completion of the 6-month post-randomization delay, we examined combined outcomes for Tele-Savvy. Results: Participants (n=137; mean age 64.7 years) were predominantly female (68.6%) and White (68.6%). We found no initial group-by-time effects for the Pittsburgh Sleep Quality Index (PSQI) and the Insomnia Severity Index (ISI). For the combined Tele-Savvy group, there was a statistically significant improvement in ISI scores across time (p=0.050). The combined Tele-Savvy effect size for PSQI was d=0.126 and ISI was d=0.310. Discussion: Tele-Savvy resulted in a significant long-term reduction in insomnia symptoms in this sample of caregivers of PLwD and demonstrated a positive trend for improvement in their sleep quality. Since sleep disturbance is so prevalent among caregivers of PLwD, the inclusion of sleep health education into psychoeducation caregiver interventions may yield even better outcomes for caregivers.

Sleep Profiles of Caregivers for Persons Living with Dementia: A Qualitative Study.

Sleep disturbance is prevalent among caregivers of people living with dementia. However, gaps exist about caregivers' sleep patterns before and during their caregiving trajectory. This exploratory secondary analysis using a qualitative descriptive approach aimed to (1) identify and describe current caregivers' patterns of change in sleep before and during caregiving, and (2) understand caregivers' perceptions of their current sleep compared to their pre-caregiving sleep. We conducted semi-structured interviews with 19 caregivers taking part in a larger randomized controlled trial. Participants were female (n = 11), white (n = 13) and on average 63 years of age. Interview questions focused on caregivers' sleep patterns. The interviews were audio-recorded using a videoconferencing platform and ranged from 20 to 45 minutes. We conducted thematic analysis of the interview transcripts. Three distinct caregiver-sleep profiles emerged from the qualitative data: changed and dissatisfied, changed and satisfied, and unchanged and dissatisfied. Caregivers whose sleep was categorized as changed reported a difference when comparing their current sleep pattern to their pre-caregiving sleep pattern. This was usually a change from good to poor sleep. Caregivers whose sleep was unchanged had poor sleep pre-caregiving and continued to have poor sleep during caregiving. Caregivers also reported being satisfied or dissatisfied with their current sleep pattern, defined in terms of distress and impairment. These three subtypes highlight the heterogeneity of caregivers' sleep experiences and debut a useful clinical framework with which to identify, categorize, and target caregivers at risk for sleep disturbance, many who may be ready to engage in behaviors to improve their sleep. Knowing caregivers' sleep profiles will enable health care providers and researchers to determine caregivers' needs and readiness for interventions then work collaboratively with them to improve their sleep problems.

Barriers to accessing and engaging in healthcare as potential modifiers in the association between polyvictimization and mental health among Black transgender women.

BACKGROUND: Black transgender women endure pervasive polyvictimization (experiencing multiple forms of violence throughout the lifespan). Polyvictimization is associated with poor mental health. Black transgender women also face barriers in access to healthcare, but the extent that such barriers modify the association between polyvictimization and poor mental health has not been described using convergent mixed-methods analysis. METHODS: This convergent mixed-methods secondary analysis employs an intersectional lens and integrates two inter-related datasets to describe barriers to healthcare and the extent that such barriers modify the association between polyvictimization and mental health among Black transgender women. Investigators used survey data (n = 151 participants) and qualitative interview data (n = 19 participants) collected from Black transgender women (age 18 years and older) in Baltimore, MD and Washington, DC between 2016 and 2018. Analyses include thematic content analysis, bivariate analysis, joint display, and multivariate linear regression analysis examining mediation and moderation. RESULTS: Joint display illuminated three domains to describe how barriers to healthcare present among Black transgender women-Affordability, Accessibility, and Rapport and Continuity. Independent t-tests revealed significantly higher polyvictimization, Post Traumatic Stress Disorder (PTSD), and depression scores among participants who reported at least one barrier to healthcare (BHI) compared to those who reported no barriers. BHI significantly moderated and partially mediated the association between polyvictimization and PTSD symptom severity and BHI fully mediated the association between polyvictimization and depressive symptom severity-when accounting for age and location. DISCUSSION: Findings highlight the importance of access to healthcare in modifying the association between polyvictimization and PTSD and depression symptom severity among Black transgender women. Findings call for immediate interventions aimed at reducing barriers to healthcare and improved training for clinical providers serving Black transgender women.

Barriers to Pain Management: Incongruence in Black Cancer Caregiving Dyads.

CONTEXT: To effectively manage cancer pain, there is a need to understand how caregiving dyads appraise symptoms. Dyadic appraisal of symptoms influences whether the dyad perceives the patient's pain is managed well and whether they are on the same page with their appraisal. Beliefs can act as barriers to the dyadic appraisal. OBJECTIVES: This secondary data analysis examined incongruence within Black cancer caregiving dyads regarding beliefs about pain management and potential medication side effects using the Barriers Questionnaire-13. Associated factors were also examined. METHODS: Guided by the Theory of Dyadic Illness Management, dyadic multilevel modeling was conducted with data from 60 Black cancer caregiving dyads to determine the dyadic appraisal of beliefs about pain management and potential medication side effects, which includes the average perception of barriers within the dyad (i.e., dyadic average) and the dyadic incongruence (i.e., gap between patient and caregiver). RESULTS: On average, Black cancer caregiving dyads reported moderate barriers regarding pain management (2.262 (SE=0.102, P<0.001) and medication side effects (2.223 (SE=0.144, P<0.001). There was significant variability across dyads regarding barriers to pain management and medication side effects. Lower patient education and higher patient-reported pain interference were significantly associated with more perceived barriers to pain management and potential medication side effects. Incongruence within dyads regarding barriers to pain management and medication side effects were significantly associated with the caregiver's report of patient's pain interference. CONCLUSION: Findings suggest the importance of appraisal that includes both members of Black cancer caregiving dyads regarding pain management.

Promoting Caregiver Mastery in Black American Dementia Caregivers.

Over 6 million older Americans live with Alzheimer's disease and related dementias; Black American older adults' prevalence is more than twice that of non-Hispanic White older adults. The Black American dementia caregiving experience can be encapsulated within the Black Family Socioecological Context Model, which provides a conceptual basis for examining social determinants of health at individual, family, community, and societal levels with careful consideration for how the intersection of race, gender, and class of Black American dementia caregivers influences the multiple dimensions of their caregiving experiences. Family dynamics, community setting, and health care systems have a potentially bidirectional influence on these caregivers, which is shaped by historical and ongoing systemic and institutional racism and general disenfranchisement. This Forum article outlines how the Social Cognitive Theory offers ways for Black American dementia caregivers to achieve a sense of mastery within the complicated and fraught ecology within which their caregiving occurs. We propose a research agenda to create programs and interventions for enhancing a sense of mastery among Black American dementia caregivers. Two concepts in particular, "constraints" and "efficacy expectations," provide ways to create a systematic approach to developing successful coping strategies for the constraints perceived by individuals as they undertake and function in the caregiving role. The recognition of the complexity of the caregiving ecosystem and intersectionality of caregivers' experience and identity emphasize the importance of individualization: Each caregiver's experience of this ecosystem-and therefore each Black American dementia caregiver's way to mastery within it-will be uniquely shaped and experienced.

Using poetry as data to explore daily and formal care decision making within African American dementia dyads.

There is limited research exploring how daily and formal care decision making occurs within African American dementia dyads as well as how these dyads navigate decision making across the dementia trajectory. Through semi-structured interviews, five African American dementia dyads shared their decision-making processes. We used a multimethod approach to the analysis of data, including qualitative and quantitative content analysis and the creation of I Poems. This novel use of I Poems provided a uniquely personal account of the lived experiences of the African American persons living with dementia, while other analyses revealed that within dyads, daily care decision making was led by African American persons living with dementia, whereas formal care decision making varied between dyads. There was intra-dyad congruence regarding who the final decision maker was in daily and formal care. Clinicians and researchers may be able to tailor interventions based on the dyad's involvement in these decision-making processes.