Mental Health Outcomes of Immigrant- and US-Born Caregivers: California Health Interview Survey, 2019-2020.

Objectives. To compare the mental health outcomes of US-born with immigrant caregivers of adult care recipients. Methods. We conducted a cross-sectional secondary analysis of the 2019 California Health Interview Survey (CHIS), administered via web or telephone to 22 152 participants between September and December 2019. We characterized (1) caregivers and noncaregivers, and (2) US-born versus immigrant caregivers. Then, we estimated and compared (3) the relationship between caregiving status and severe psychological distress among US-born and immigrant respondents, and (4) correlates of severe psychological distress among US-born and immigrant respondents. Results. Caregivers were more likely than noncaregivers to report severe psychological distress (P < .05). Immigrant caregivers residing separately from their care recipient were significantly more likely to experience severe psychological distress (odds ratio = 3.76; P < .01). Conclusions. US-born and immigrant caregivers may experience different risk factors for psychological distress associated with caregiving. Clinical and community resources should be tailored to caregivers' distinct needs with consideration of how access to resources (e.g., language), circumstances (e.g., acculturation), and cultural norms (e.g., filial piety) may be associated with exacerbation of psychological distress among immigrants. (Am J Public Health. 2024;114(S2):S189-S199. https://doi.org/10.2105/AJPH.2023.307396).

Where are caregivers in the clinical trial? Evaluation of caregiver responsibilities in Alzheimer's disease and related dementias clinical trials.

INTRODUCTION: Family caregivers of persons with Alzheimer's disease and related dementias (ADRD) have significant responsibilities within health care. They may identify relevant clinical trials and support decision-making about their relative's participation. The objectives of this study were to (a) evaluate the responsibilities of caregivers related to their relative's participation in ADRD clinical trials and (b) examine how these responsibilities are communicated on clinicaltrials.gov. METHODS: We reviewed ADRD clinical trials completed between 1990 and 2021 using clinicaltrials.gov. RESULTS: Less than half of clinical trial study information pages included caregiver responsibilities. Nine caregiver responsibilities were provided among those with information (e.g., giving consent, caregiver training and education, monitoring patient's response to intervention, communicating with study team). DISCUSSION: ADRD clinical trial study information pages should consistently include caregiver responsibilities to help caregivers better prepare for trial responsibilities. This enhanced engagement with caregivers could also facilitate recruitment and retention, including participants from diverse communities. HIGHLIGHTS: Alzheimer's disease and related dementias (ADRD) clinical trial study information does not consistently include caregiver responsibilities. Caregiver responsibilities in clinical trials span communication, monitoring, and transportation. Robust information provision to caregivers could support participant recruitment and retention. Meaningfully engaging caregivers could support recruitment of diverse participants.

Family Caregivers' Experiences With Telehealth During COVID-19: Insights From Michigan.

Telehealth can benefit older adults during COVID-19. The purpose of this study was to understand benefits and barriers to telemedicine visits for older adults from the perspectives of family caregivers. A cross-sectional, online survey was conducted across the state of Michigan with family caregivers (n = 90) who responded to open- and closed-ended questions. Perceived benefits of telemedicine included access and rapport; barriers included the appropriateness of telemedicine for certain health care needs. Telemedicine is a likely to remain beyond COVID-19 and can facilitate access to and continuity of care. There are barriers, however, that must be addressed, especially among older patients.

Learning about COVID-19: sources of information, public trust, and contact tracing during the pandemic.

OBJECTIVE: To assess the association between public attitudes, beliefs, and information seeking about the COVID-19 pandemic and willingness to participate in contact tracing in Michigan. METHODS: Using data from the quarterly Michigan State of the State survey conducted in May 2020 (n = 1000), we conducted multiple regression analyses to identify factors associated with willingness to participate in COVID-19 contact tracing efforts. RESULTS: Perceived threat of the pandemic to personal health (B = 0.59, p = <.00, Ref = No threat) and general trust in the health system (B = 0.17, p < 0.001), were the strongest positive predictors of willingness to participate in contact tracing. Concern about misinformation was also positively associated with willingness to participate in contact tracing (B = 0.30, p < 0.001; Ref = No concern). Trust in information from public health institutions was positively associated with willingness to participate in contact tracing, although these institutions were not necessarily the main sources of information about COVID-19. CONCLUSION: Policy makers can enhance willingness to participate in public health efforts such as contact tracing during infectious disease outbreaks by helping the public appreciate the seriousness of the public health threat and communicating trustworthy information through accessible channels.

Patient Portal Use, Perceptions of Electronic Health Record Value, and Self-Rated Primary Care Quality Among Older Adults: Cross-sectional Survey.

BACKGROUND: Older adults are increasingly accessing information and communicating using patient-facing portals available through their providers' electronic health record (EHR). Most theories of technology acceptance and use suggest that patients' overall satisfaction with care should be independent of their chosen level of portal engagement. However, achieving expected benefits of portal use depends on demonstrated support from providers to meet these expectations. This is especially true among older adults, who may require more guidance. However, little is known about whether misalignment of expectations around technology-facilitated care is associated with lower perceptions of care quality. OBJECTIVE: The aims of this study were to analyze whether older adults' assessment of primary care quality differs across levels of patient portal engagement and whether perceptions of how well their provider uses the EHR to support care moderates this relationship. METHODS: We conducted a cross-sectional survey analysis of 158 older adults over the age of 65 (average age 71.4 years) across Michigan using a 13-measure composite of self-assessed health care quality. Portal use was categorized as none, moderate (use of 1-3 functionalities), or extensive (use of 4-7 functionalities). EHR value perception was measured by asking respondents how they felt their doctor's EHR use improved the patient-provider relationship. RESULTS: Moderate portal users, compared to those who were extensive users, had lower estimated care quality (-0.214 on 4-point scale; P=.03). Differences between extensive portal users and nonportal users were not significant. Quality perception was only particularly low among moderate portal users with low EHR value perception; those with high EHR value perception rated quality similarly to other portal user groups. CONCLUSIONS: Older adults who are moderate portal users are the least satisfied with their care, and the most sensitive to perceptions of how well their provider uses the EHR to support the relationship. Encouraging portal use without compromising perceptions of quality requires thinking beyond patient-focused education. Achieving value from use of patient-facing technologies with older adults is contingent upon matched organizational investments that support technology-enabled care delivery. Providers and staff need policies and practices that demonstrate technology adeptness. Older adults may need more tailored signaling and accommodation for technology to be maximally impactful.

An Analysis of the Learning Health System in Its First Decade in Practice: Scoping Review.

BACKGROUND: In the past decade, Lynn Etheredge presented a vision for the Learning Health System (LHS) as an opportunity for increasing the value of health care via rapid learning from data and immediate translation to practice and policy. An LHS is defined in the literature as a system that seeks to continuously generate and apply evidence, innovation, quality, and value in health care. OBJECTIVE: This review aimed to examine themes in the literature and rhetoric on the LHS in the past decade to understand efforts to realize the LHS in practice and to identify gaps and opportunities to continue to take the LHS forward. METHODS: We conducted a thematic analysis in 2018 to analyze progress and opportunities over time as compared with the initial Knowledge Gaps and Uncertainties proposed in 2007. RESULTS: We found that the literature on the LHS has increased over the past decade, with most articles focused on theory and implementation; articles have been increasingly concerned with policy. CONCLUSIONS: There is a need for attention to understanding the ethical and social implications of the LHS and for exploring opportunities to ensure that these implications are salient in implementation, practice, and policy efforts.

Improving the Informed Consent Process in Hematopoietic Cell Transplantation: Patient, Caregiver, and Provider Perspectives.

One of the significant modifications to the Common Rule is the requirement that prospective participants be given information sufficient for a "reasonable person." However, research is limited on what types of information patients, caregivers, and providers consider "key information." Although certain aspects of informed consent (IC) may be considered standard, considering the individualized needs and preferences of patients is necessary for patient-centered consent. In this study, we qualitatively examined the specific types of information that patients and caregivers involved in hematopoietic cell transplantation (HCT), as well as their providers, believe to be important and necessary as part of the IC process to make a decision about participating in clinical research; and further, how these perspectives are aligned. Our findings suggest opportunities for improving the IC document and process by emphasizing information of importance to patients, such as the benefits to others and contributions to science that are associated with participation in clinical research. Furthermore, increasing patient engagement during the IC process may allow providers to streamline information that is aligned with patient information needs and preferences.

Organizational and Policy Challenges and Priorities for Integrating Family Care Partners Into the Healthcare Team.

Family care partners are significantly involved in healthcare tasks in order to support adult relatives. Yet, unlike pediatric models of care where caregivers of children are formally integrated into healthcare teams, care partners of adults are rarely engaged in a formal, structured, or consistent manner. Their inclusion in the healthcare team is critical to their capacity to continue supporting their relative. A meaningful dialogue between policy and healthcare management is required to identify feasible and effective ways of engaging family care partners in healthcare teams.

Characterizing telehealth use in the US: analysis of the 2022 Health Information National Trends Survey.

OBJECTIVES: Use of telehealth has been on the rise since the start of the COVID-19 pandemic. Although there has been much investigation of telehealth use in the context of replacing in-person visits, there has been limited study of patients' motivations for using telehealth. The objectives of this study were to (1) evaluate patient characteristics associated with telehealth use and (2) evaluate patients' motivations for using telehealth. STUDY DESIGN: We conducted a cross-sectional secondary data analysis of the 2022 nationally representative Health Information National Trends Survey. METHODS: We conducted logistic regression models estimating the relationship between demographic and health characteristics and (1) use of telehealth services in the previous 12 months and (2) each of 5 motivations for using telehealth among telehealth users. RESULTS: The most common reason for using telehealth was recommendation or requirement by a clinician (73.6%). Respondents with depression were more likely to use telehealth than those without depression (OR, 2.73; P < .001) and were more likely to be motivated by convenience (OR, 1.80; P < .01), and Hispanic respondents were more likely to use telehealth to avoid exposure to infection (OR, 1.58; P < .05). CONCLUSIONS: Identifying patients' motivations may help decision makers better understand the perceived value of telehealth among patients and may help policy makers and administrators create opportunities for increased patient choice around visit modality to maximize health care access, value, and quality. Consideration of patient motivations for telehealth use may support practitioners in making tailored and person-centered decisions when recommending telehealth vs in-person visits.

Factors Influencing Caregivers' Use of Respite Care Services: Secondary Analysis of the National Study of Caregiving.

This study examines when and why unpaid caregivers use respite services. We conducted a secondary analysis of the 2017 National Study of Caregiving (NSOC) Wave III, a U.S. nationally representative sample comprising 2652 unpaid caregivers. We found that unpaid caregivers reporting financial, physical, and emotional difficulties in caregiving were more likely to use respite care services than those not reporting these challenges. White, non-Hispanic caregivers reporting that they received support from their social networks (families/friends) were more likely to use respite care services than non-White and/or Hispanic caregivers receiving such support. Non-White and/or Hispanic caregivers who belonged to or attended support groups were more likely to use respite care support than those without social group affiliation. Respite care is underutilized in the U.S. despite its value and efficacy in supporting caregivers' mental and physical well-being. Policies are necessary to increase availability and access to respite services for diverse unpaid caregivers.

Family Caregivers' Role in Navigating Diet: Perspectives from Caregivers of Older Asian Americans.

Family caregivers uphold significant healthcare responsibilities including language translation and diet management. This study sought to understand family caregivers' experiences and challenges navigating and managing their older Asian American relative's diet. We conducted an exploratory sequential mixed-methods study with family caregivers involving (1) qualitative interviews (n = 40) and (2) a nationwide survey (n = 100). Interviewees discussed their role and challenges with (a) applying American/Western clinical dietary recommendations to their relative's traditional meal preferences and (b) managing misalignment between their relative's traditional dietary preferences and the food offered in hospitals and long-term care environments. Survey responses triangulated; almost 65% of family caregivers prepared and brought traditional meals to healthcare facilities upon observing a lack of culturally relevant food options. Culturally relevant nutrition training for family caregivers can help them support their relative in community settings. Creating an inclusive healthcare system requires transforming the food environment within healthcare facilities.

Hospital Discharge Planners Need More Information When Referring Patients to Home Health Care: Insights From the Coronavirus Disease 2019 Pandemic.

Hospital discharge planners play an important role in helping patients choose appropriate home health care. However, during the COVID-19 pandemic, they may not have had enough information to make the best decisions for their patients. A study of 58 discharge planners from Michigan hospitals found that 90% of them wanted information about the quality of home health agencies and whether they were prepared for COVID-19. However, only about 20% had this information readily available. The study also found that discharge planners varied in how they incorporated quality information. Some did not incorporate any quality information at all, while others provided it to patients without explaining its significance. Only about 25% of discharge planners helped patients interpret different sources of information. These findings suggest that hospital discharge planners had an unmet need for quality information, and they also provided limited assistance to patients. This may have led to some patients receiving suboptimal care. Thus, we proposed that hospital discharge planners need more information about the quality of home health agencies. Discharge planners should be more transparent about the quality of information they have, and they should help patients interpret it.

Perceived Facilitators and Barriers to Implementing Culturally Inclusive Diets into Hospitals and Long-Term Care Facilities.

OBJECTIVES: To identify perceived facilitators and barriers to implementing culturally inclusive foods into hospitals and long-term care (LTC) from the perspectives of registered dietitians and food service directors. DESIGN: Cross-sectional survey. SETTING AND PARTICIPANTS: Online nationwide survey of registered dietitians and food service directors working in hospitals or LTC. METHODS: We analyzed and compared participants' perceived barriers to implementing culturally inclusive foods in hospitals and LTC, assessed through a question in which we provided respondents with 13 different barriers and asked them to report the top 3. Then, we conducted a qualitative analysis of perceived facilitators, which respondents described in open-ended comments. RESULTS: The most common perceived barriers to implementing culturally inclusive foods were cost of ingredients (44%) and staff cultural knowledge and competence (44%). LTC respondents perceived barriers including (1) willingness of staff to adopt new practices, (2) time, (3) staff burnout, and (4) local/facility-level regulatory barriers more frequently than hospital respondents. Administrative buy-in, staff diversity, and patient considerations (eg, feedback and demand) were perceived facilitators to implementing culturally inclusive foods. CONCLUSIONS AND IMPLICATIONS: Implementing culturally inclusive foods into hospitals and LTC requires administrative buy-in, willingness to change, and resources including staff diversity and cultural knowledge and awareness. Incorporating patient feedback and preferences into decisions related to dietary offerings could further motivate menu modifications. Further examination of organizational and state policies regulating diet, particularly in LTC settings, is necessary to understand both how to implement culturally inclusive foods and further, to inform investigation of health outcomes (physical and mental) associated with increasing culturally inclusive food offerings in these facilities.

Applying anti-racist approaches to informatics: a new lens on traditional frames.

Health organizations and systems rely on increasingly sophisticated informatics infrastructure. Without anti-racist expertise, the field risks reifying and entrenching racism in information systems. We consider ways the informatics field can recognize institutional, systemic, and structural racism and propose the use of the Public Health Critical Race Praxis (PHCRP) to mitigate and dismantle racism in digital forms. We enumerate guiding questions for stakeholders along with a PHCRP-Informatics framework. By focusing on (1) critical self-reflection, (2) following the expertise of well-established scholars of racism, (3) centering the voices of affected individuals and communities, and (4) critically evaluating practice resulting from informatics systems, stakeholders can work to minimize the impacts of racism. Informatics, informed and guided by this proposed framework, will help realize the vision of health systems that are more fair, just, and equitable.

Conceptual Framework for Integrating Family Caregivers Into the Health Care Team: A Scoping Review.

More than 80% of family care partners of older adults are responsible for coordinating care between and among providers; yet, their inclusion in the health care delivery process lacks recognition, coordination, and standardization. Despite efforts to include care partners (e.g., through informal or formal proxy access to their care recipient's patient portal), policies and procedures around care partner inclusion are complex and inconsistently implemented. We conducted a scoping review of peer-reviewed articles published from 2015 to 2021 and reviewed a final sample of 45 U.S.-based studies. Few articles specifically examine the inclusion of care partners in health care teams; those that do, do not define or measure care partner inclusion in a standardized way. Efforts to consider care partners as "partners" rather than "visitors" require further consideration of how to build health care teams inclusive of care partners. Incentives for health care organizations and providers to practice inclusive team-building may be required.