Western Journal of Nursing Research

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.

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.

Lewy body disease (LBD) is a devastating condition with cognitive and physical deficits that pose a challenge to family caregivers. The purpose of this study was to identify the needs and concerns of family caregivers of persons with LBD. A convenience sample of LBD caregivers were interviewed regarding their caregiving needs, concerns, strategies, and advice. A content analysis approach was used to organize data into themes from an existing needs and concerns framework. Findings included the need for more information about the disease, strategies for managing LBD-related emotions and behaviors, support and assistance with physical and instrumental care, and strategies for managing one’s own personal responses to caregiving. Findings highlight the need for a Lewy body specific caregiver assessment tool and future caregiver interventions.

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.

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.

Poor sleep is prevalent among caregivers of persons living with dementia and increases their risk for cognitive impairment and decline. In this cross-sectional, correlational study, we compared the cognitive function scores of caregivers with poor sleep with the demographically adjusted normed scores of the National Institutes of Health Toolbox Cognition Battery. Caregivers completed a 14-day sleep diary. On average, caregivers (n = 28) were 65.14 (±10.08) years, female, and White. Their average crystallized cognitive function composite score was significantly higher and their average fluid cognitive function composite score was significantly lower than the normative scores. Caregivers performed significantly worse on the processing speed domain measure. Poor sleep may affect how caregivers, including highly educated caregivers, process and respond to information, thus can influence how they safely perform complex caregiving tasks. Health care providers should consistently assess caregivers’ sleep and cognitive abilities to promptly identify changes and provide timely interventions.

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.

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.

Although family caregivers who use both the personal and social resourcefulness skills have the best health outcomes, it is unknown whether their tendency toward personal or social resourcefulness varies by their care recipient’s condition. This cross-sectional study of existing data from 234 caregivers of persons with various conditions examined five item pairs from the Resourcefulness Scale^© with responses capturing personal and social resourcefulness in relation to anxiety, anger, sadness, indecision, and financial distress. Caregivers were categorized by the recipient’s condition (amyotrophic lateral sclerosis, cancer, dementia, mental illness, Parkinson’s disease, stroke, traumatic brain injury, other, or multiple conditions). Findings showed that across most groups, caregivers used both personal and social resourcefulness when angry, sad, or indecisive and personal resourcefulness when anxious or managing money. Caregivers of persons with cancer, traumatic brain injury, stroke, and mental illness differed. The findings provide a basis for future clinical trials across diverse caregiver groups.

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.

Persons with dementia have high rates of hospitalization, and along with their caregivers commonly experience negative hospital outcomes. The recruitment and retention of acutely ill older adults with dementia and caregivers can pose a challenge to investigators and threaten the validity of findings. The challenges encountered in an ongoing cluster randomized clinical trial in dyads of hospitalized persons with dementia and family care partners are described. The trial tests the efficacy of a nurse–family partnership model that aims to improve the following: (a) the physical and cognitive recovery in hospitalized persons with dementia, and (b) caregiver preparedness and anxiety. Strategies that address challenges include careful preplanning and preparation with the hospital site, strong communication with dyads and between team members, and honoring preferences and needs related to communication.

Due to the burden of caregiving, family caregivers of children with cancer suffer from physical and psychosocial health problems. The aim of this study was to develop a Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and to assess its psychometric properties. A methodological, descriptive study design was conducted. The study sample consisted of 217 family caregivers caring for children with cancer between the ages of 0 and 18 years. The item pool of the scale was created using the Delphi Technique. The Cronbach’s alpha coefficient for the overall scale was 0.93. The item-total score correlations ranged from 0.424 to 0.645. The exploratory factor analysis showed that the scale explained 68.34% of the total variance. The confirmatory factor analysis also showed that the factor loadings of the scale ranged from 0.46 to 0.96. NNFI, CFI, and IFI were found to be > 0.90, and RMSEA was found to be < 0.09. The CBSFC-CC was found to be a good multidimensional instrument for evaluating the burden on family caregivers of pediatric cancer patients. It can be used in clinical practice and research. This tool can be considered to tailor interventions aimed at improving caregiver outcomes.

Stroke family caregivers often neglect their own health while providing care. Rigorous reviews have focused on stroke caregiver needs and outcomes; however, a comprehensive review of stroke caregiver health is lacking. The purpose of this integrative review was to determine factors associated with stroke family caregiver health. Using a PRISMA flow diagram and Rayyan software, 41 studies were identified published from January 2000 to December 2020. Databases included Cochrane Reviews, Cochrane Trials, PsycINFO, Ovid MEDLINE, PubMed, EBSCOhost MEDLINE, Embase, and CINAHL. Rigorous guidelines were used to critique the 41 articles. Health measures were global in nature, lacking details regarding health promotion activities important to stroke family caregiver health. Common factors associated with caregiver health were depressive symptoms and burden. Further research is needed to design more situation-specific instruments to measure stroke family caregiver health, as well as interventions to reduce depressive symptoms and burden while promoting caregiver health.