Resourcefulness Intervention Efficacy for Parent Caregivers of Technology-Dependent Children: A Randomized Trial

Parent caregivers of children who require lifesaving technology (e.g., mechanical ventilation, feeding tubes) must maintain a high level of vigilance 24/7. A two-arm randomized controlled trial tested the efficacy of a resourcefulness intervention on parents’ mental/physical health and family functioning at four time points over six months. Participants ( n = 93) cared for their technology-dependent children <18 years at home. The intervention arm received teaching on social (help-seeking), personal (self-help) resourcefulness skills; access to the intervention video and skill application video-vignettes; four weeks of skills reinforcement using daily logs; four weekly phone contacts; and booster sessions at two- and four-month postenrollment. The attention control arm received phone contact at identical time points plus the current standard of care. Statistically significant improvement was noted; fewer depressive cognitions and improved physical health for the intervention participants than attention control participants over time after controlling for covariates. The findings support the resourcefulness intervention efficacy.

Family Caregiver Preferences and Contributions Related to Patient Care in the ICU

Guided by Individual and Family Self-Management Theory, the purpose of this cross-sectional study was to describe patient care activities that family caregivers endorsed and performed while visiting their family member in the ICU. We found that caregivers wanted to be involved in ICU patient care and had preferences for the care they wanted to perform with their critically ill family member. More than 80% preferred to perform tasks related to daily grooming, communication, and education. Of note, many caregivers expressed interest in holistic healing activities (i.e., music and art), and yet, less than 50% of caregivers reported participating in these activities. The discrepancy between the number of care activities that respondents desired to perform compared to the number of care activities they reported performing represents an important opportunity to shift research and practice improvement efforts toward more tailored family engagement interventions and recognition of family caregivers as essential partners in care.

Burden and Heart Rate Variability in Bipolar Disorder Family Caregivers

Family caregivers of persons with bipolar disorder experience considerable stress. Yet, studies have not examined whether their stress differs by race and gender. This preliminary analysis of baseline data from 228 African American and White family caregivers of adults with bipolar disorder who were enrolled in a randomized controlled trial examined race and gender differences on two validated self-report measures of psychological stress (caregiver burden and caregiver reactions) and an electrocardiography device used to capture heart rate variability (HRV). No statistically significant differences were found by race or gender on either measure of psychological stress. African American caregivers had significantly lower scores on two indices of HRV compared to White caregivers. Women had significantly lower scores on one index of HRV compared to men. Low HRV indicates greater stress and mortality risk. Future research should include HRV to measure caregiver stress and implement relevant interventions.

A Landscape of Subjective and Objective Stress in African American Dementia Family Caregivers

Stress is a significant part of daily life, and systemic social inequities, such as racism and discrimination, are well-established contributors of chronic stress for African Americans. Added exposure to the stress of caregiving may exacerbate adverse health outcomes. This secondary analysis describes subjective and objective stress in African American family caregivers, and relationships of subjective and objective stress to health outcomes. Baseline data from 142 African American dementia family caregivers from the “Great Village” study were described using means and frequencies; regression models and Pearson’s correlation were used to examine associations between demographics, social determinants of health, and health outcomes. Mixed models were used to examine change and change variation in cortisol. Most caregivers had moderate degrees of stress. Stress was associated with sleep disruption and depressive symptoms, and discrimination appeared to be an independent contributor to depressive symptoms. This work provides a foundation for interpreting subjective and objective indicators of stress to tailor existing multicomponent interventions.

Developing Behavioral Coding to Understand Family Communication Breakdown in Dementia Care

Communication breakdown is a challenge for family caregivers of persons living with dementia. We adapted established theory and scales for computer-assisted behavioral coding to characterize caregiver communication for a secondary analysis. We developed verbal, nonverbal, and breakdown coding schemes and established reliability (κ > .85). Within the 221 family caregiving videos analyzed, 55% of exchanges were interactive, 30% were silence, 4% consisted of talking to self or others, and 8% included a breakdown. An average of 2.4 ( SD = 1.9) breakdowns occurred per observation and were successfully resolved 85% of the time, with 31% being resolved most successfully following only one flag and repair strategy. Caregivers were the primary speakers (67%); their communication preceded most breakdown (65%), and they primarily initiated the repairs after a breakdown (70%). Common repair strategies included clarifications (31%), asking questions (24%), and repeating information (24%). Associations between communication strategies and repair success will provide evidence for caregiver training.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.

Stress and Supportive Care Needs of Millennial Caregivers: A Qualitative Analysis

Millennial caregivers, born between 1981 and 1996, are an understudied caregiver group. They experience stress-related consequences of caregiving and are unique in their developmental stage and generational norms. The purpose of this study was to understand the context of caregiving and stressors for these caregivers. In total, 42 caregivers were recruited through Research Match and social media platforms. Caregivers completed online surveys with open-ended response questions and 15 caregivers completed semistructured interviews. Data were analyzed deductively and inductively using the Stress Process Model as a framework. Millennial caregivers described uncertainty and disruption as overarching experiences. Stressors related to balancing caregiving, work, and family responsibilities were most prominent. Caregivers reported needing support from friends/family, health care team members, community, and work/governmental policy. Mental health treatment was identified as most helpful for managing stress. Millennial caregivers have distinctive contexts that impact their caregiving needs. Caregiving interventions must take these needs into consideration.

Perceptions of Postpartum Teaching and Knowledge of Warning Signs among Black Mothers

The postpartum period is the time of highest risk for maternal death. Quality postpartum education is important to minimize risk. We assessed the postpartum education given to Black mothers on post-birth warning signs by conducting a cross-sectional survey of 80 Black women who had given birth in the previous 12 months. Participants completed an electronic questionnaire, and data were analyzed using descriptive and regression models. On average, educational needs were reported by 20 participants as being unmet, 27 as being met, and 30 as being more than met. Only 54.4% of the participants reported receiving education about postpartum warning signs. The percentage of participants able to identify each sign ranged from 11.4% to 35.4%. No participants identified more than five of the nine warning signs, and 25% identified none. Knowledge of post-birth warning signs was significantly associated with the delivery hospital, household income, and education on warning signs before discharge.