Family Caregiver Health in a Pandemic

Each year family caregivers provide care and services worth billions of dollars to support the needs of older Americans. Their support is invaluable to keep individuals in the community for as long as possible and to allow individuals to attain and maintain their highest practicable level of well-being. But what impact does caregiving have on one’s health? Does caregiver health decline with the assumption of caregiving duties? Did caregiver health change during the pandemic? If so, how and what factors are associated with declines in caregiver health? To answer these questions, an exploratory survey was conducted among a convenience sample of 195 family caregiver. Almost a third of those sampled reported excellent or very good health, while 44% reported good health, and almost a quarter reported poor or fair health. Forty-eight percent reported their health had declined since they assumed caregiving duties and 29% reported their health had declined during the pandemic. Employed caregivers and those experiencing less depression/anxiety reported better health. Those experiencing a decline in health with caregiving were more likely to be female, not employed, experienced more stress and more depression/anxiety. Those experiencing a decline in health during the pandemic reported less spirituality, greater attachment related avoidance, and greater depression/anxiety. Findings from this research can be used to inform future research on the effect of the pandemic on family caregiving and to plan interventions to protect caregiver health as they provide vital services to maintain individuals in the community for as long as possible.

The Rush Caregiver Initiative: A Model for Caregiver Health and Wellness in Age-Friendly Health Systems

The Rush Caregiver Health and Well-Being Initiative (Caregiver Initiative) draws together evidence-based practices into a single framework to improve care for older adults and caregivers. The Caregiver Initiative has two components: system-level and caregiver level interventions. The complexities of system change take place within leadership, data management, and provider teams throughout the health care system, and solutions to resistance have been developed. Caregiver-level interventions start with an assessment using evidence-based tools, and offer an opportunity to participate in a Teach-Back Clinic, Family Care Planning sessions, and/or Goals of Medical Care meetings, all connected to the 4Ms of an Age-Friendly Health System. Contact and follow-up issues were addressed, and as of February 2021, 191 caregivers have enrolled. Outcomes to date show statistically and clinically significant reductions in depression, anxiety, and caregiver burden. This presentation will highlight lessons learned in the development of the model and caregiver outcomes to date.

User Interface and User Experience Testing of an Online Translation of the REACH II Intervention: GamePlan4Care

GamePlan4Care (GP4C) is a web-based adaptation of the Resources for Enhancing Alzheimer’s Caregiver Health II (REACH II) caregiver intervention, redesigned and reformatted for online delivery. The goal of GP4C is to create an online family caregiver support platform that facilitates self-directed exposure to evidence-based skills-training and support for dementia caregivers. This approach of utilizing technology enhanced with live support has the potential for scalability and sustainability. In preparation for an ongoing randomized clinical trial, the GP4C platform underwent industry standard user interface/user experience (UI/UX) testing with dementia caregivers as part of an iterative design process. Testing of caregiver’s reaction to technical and content-related aspects of the system was conducted with 31 caregivers. The thematic analysis revealed three themes for technical aspects (logical flow, suggestions on features, innovative resource) and two themes for content aspects (satisfaction and engagement). We will discuss technical and content modifications resulting from UI/UX.

Antiretroviral Therapy in Children and Adolescents: A Look Into Modern Single Tablet Regimens

Single tablet regimens (STRs) have simplified antiretroviral therapy (ART) over the years in the adult human immunodeficiency virus (HIV) population. However, there is still a prevalent need to simplify regimens in children and adolescents living with HIV. Finding the optimal regimen requires a multi-factorial approach due to their complex pharmacokinetic profiles throughout childhood and the challenges and limitations of medication non-adherence in the pediatric population. These challenges include pill size, available formulations, palatability, and caregiver health literacy, which can all affect the proper administration of medications. The complexity of this population implies the importance of customizing everyone's antiretroviral regimen so that the patient and family can successfully adhere to the therapy. The current recommendations for ART in the adult and pediatric populations are similar, yet the use of STRs are limited. The goal of this review was to assess current data on available STRs and determine their utility as ART in the pediatric population.

Cancer Caregiving and Health Information Technology: An Analysis of the Health Information National Trends (HINTS) Survey

Purpose: In this paper, we explore how health technology use impacts informal caregivers’ health and how sociodemographic factors are related, using the Health Information National Trends Survey (HINTS). Methods: Data for this study were obtained from the National Cancer Institutes’ Health Information and National Trends Survey (HINTS 5, Cycle 2, 2018). Participants for the current study were chosen based on their response to one question related to their caregiving status. The sample size was 483 respondents. Variables of interest included caregiver relationship type, general technology use, portal use, and overall health status. Results: The results indicate that there was not a significant difference of caregiving role on portal usage, [F(5,99) = .975, p = .44, η2 = .049], and technology use [F(7, 462)=2.625, p=.01]. This demonstrates that those caregiving for a child are more likely to use technology for health related issues. There was not a significant effect of portal use on caregiver health. However, there was a significant effect of technology use on overall health (t = 2.074, p=.04). There was also a significant effect of demographics on general technology use [F(7, 434)= 14.858, p < .001]. Demonstrating as education and income increases, technology use also increases, and as age increases technology use decreases. Conclusion: This study affirmed that demographic inequalities can negatively impact technology and portal use, which could reduce the burden on caregivers. Therefore, it is important to work to engage cancer patients and their caregivers with technological support and resources.

Changes in Caregiver Personal Support Networks: Gender Differences and Effects on Health (CUIDAR-SE Study)

Technological changes have led to important advances in medical diagnoses and treatments that prolong the informal care process. Support from the personal network of informal caregivers is an undervalued resource and the changes that have occurred over time are unknown. The aim of this study was to analyze the changes in personal network support among informal caregivers and to examine the effect of these changes on self-perceived caregiver health, with a focus on differences between men and women and caregivers with high and low levels of burden We also investigated caregiver perceptions and explanations of changes to their support network (losses and additions and no change). Using a mixed-methods approach, data were obtained from 32 caregivers that were intentionally selected in Spain, who were interviewed twice with a one-year interval. In the quantitative phase, personal networks analysis was performed with Egonet software, which obtained data on the composition and functional content in social support from 1600 personal relationships (25 alters for each ego in the two waves). In the qualitative phase, semi-structured interviews were conducted in the two waves with a guide in order to explore the changes in informal support resources over time. The selected men with high levels of burden pointed out a loss of network support with more discouraging reports compared with the low-burden male caregivers. Furthermore, the selected women with low burden levels mentioned losses too; however, their reports were more positive. Women reported improved health, especially those with low burden scores in the first wave and those who did not lose support. Caregivers with a high initial burden and who lost support reported worse health, particularly men and women with a strong sense of duty toward care. Social support from personal networks is important for caregiver health and its effects are influenced by gender roles. Our findings could help by improving the relational and social capital of informal caregivers and adapting them to the new needs of formal home care systems.

Theoretically Based Factors Affecting Stroke Family Caregiver Health: An Integrative Review

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.

Criticism in the Parkinson’s Caregiving Relationship: A Key Target for Intervention

Introduction: Caregiver distress is prevalent in Parkinson’s disease (PD) and predictive of negative health outcomes for both people with PD and caregivers. To identify future intervention targets, it is important to better elucidate the specific processes, such as criticism, that perpetuate burden. Objective: Evaluate the frequency and impact of criticism and reactivity to criticism in PD caregiving dyads. Methods: Eighty-three people with PD and their caregivers independently completed measures of criticism and physical and emotional health. Results: Criticism in the caregiving relationship was reported by 71.1% (n = 59) of people with PD and 80.7% (n = 67) of caregivers. Both perceived criticism and emotional reactivity to criticism were significant predictors of caregiver distress, adjusting for PD motor and non-motor symptom severity. In contrast, criticism was not related to PD depression. Conclusion: Criticism in the PD caregiving relationship is a clear target for psychotherapeutic intervention and may improve caregiver health and quality of life.