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).

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.

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.

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.

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.

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.

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.

Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.

BACKGROUND: Precision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap. OBJECTIVE: We aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships and to identify the values invoked and perceived risks and benefits of health data sharing considered by the participants when formulating their policy preferences. METHODS: We conducted 2 public deliberations, including predeliberation and postdeliberation surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, the participants engaged in facilitated small-group deliberations to discuss and rank policy preferences related to health information sharing, such as the use of a patient portal, email or SMS text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preservation of the status quo. The participants ranked their policy preferences individually, as small groups by mutual agreement, and then again individually in the postdeliberation survey. RESULTS: After deliberation, the patient portal was ranked as the most preferred policy choice. The participants ranked no change in status quo as the least preferred policy option by a wide margin. Throughout the study, the participants expressed concerns about transparency and awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around a lack of transparency, awareness, and control. Specifically, the patients were not aware of how, when, or why their data were being used and wanted more transparency in these regards as well as greater control and autonomy around the use of their health data. The deliberations suggested that patient portals would be a good place to provide additional information about data sharing practices but that over time, notifications should be tailored to patient preferences. CONCLUSIONS: Our study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.

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.

Achieving and sustaining behavior change for older adults: A Research Centers Collaborative Network workshop report.

Modifying unhealthy behaviors and/or environments may improve or maintain an older adult's health. However, achieving and sustaining behavior change is challenging and depends upon clinical, social, psychological, and political domains. In an effort to highlight the multidisciplinary nature of behavior change, the NIA Research Centers Collaborative Network (RCCN) held a two-day workshop, Achieving and sustaining behavior change for older adults. The workshop was informed by the socioecological model and designed to initiate dialogue around individual, community, and systems-level determinants of behavior change. This paper summarizes key topics presented during the workshop, discusses opportunities for future research, education, and training, and recommends how each of the six NIA research centers may pursue work in behavior change for older adults.

Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.

BACKGROUND: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. OBJECTIVE: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. METHODS: We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. RESULTS: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group's decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. CONCLUSIONS: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.

Influence of Evidence-Based Design Strategies on Nurse Wellness.

OBJECTIVES: The purpose of this study was to understand how specific evidence-based design strategies are related to aspects of nurse wellness. BACKGROUND: Addressing burnout among the healthcare workforce is a system-level imperative. Nurses face continuous and dynamic physical and emotional demands in their role. Greater insight into the role of the physical environment can support efforts to promote nurse wellness. METHODS: This exploratory qualitative study was conducted at new Parkland Hospital in Dallas, TX. We conducted five focus groups with nursing staff in July 2018. These sessions covered five topics related to nursing work in the facility which had been redesigned nearly 3 years earlier: (1) professional and social communication, (2) workflow and efficiency, (3) nurses' tasks and documentation, (4) ability to care for patients, and (5) nurses' overall health. We conducted a thematic analysis and first identified different aspects of wellness discussed by participants. Then, we examined how nurses related different design elements to different aspects of their wellness. RESULTS: Participants included 63 nurses and nurse managers. They related environmental factors including facility size, break rooms, and decentralized workstations to social, emotional/spiritual, physical, intellectual, and occupational aspects of wellness. CONCLUSIONS: It is critical to inform and integrate nurses at all levels into planning, design, and activation of new healthcare environments in order to ensure the well-being of nurses and, therefore, their ability to effectively support 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.

Policies and Resources Identified by Youth as Being Important to Prepare for Caregiving Responsibilities.

BACKGROUND: Youth are increasingly upholding significant caregiving responsibilities. These caregiving responsibilities can have emotional, educational, and professional impacts on youth and young adults. And yet, policies and resources focus on adult caregivers and are limited in supporting young caregivers. The purpose of this study was to describe the different types of support that youth identify as being important to prepare to take care of an adult relative. METHODS: We conducted an open-ended, text-message based poll of youth ages 14 to 24 in August 2020. We conducted a content analysis to categorize and describe the different types of support respondents identified in their responses. We compared types of support identified by age-group, gender identity, and prior caregiving experience. RESULTS: Most respondents (42.2%) identified education (eg, skills training) as being an important resource. Other types of support reported included financial support (eg, assistive programs), workplace policies (eg, paid leave), mental health support, and professional support. DISCUSSION: Policy makers should extend existing policies (eg, Family and Medical Leave Act) to include and consider the circumstances of youth and young adults. Policies enabling young caregivers to actively participate in their adult relative's health care visits could be critical to preparing youth for the skills required and the physical and emotional demands associated with caregiving. Coordinated efforts between health and education systems could support youth in learning information about caregiving, medical decision making, and medical tasks.

Evaluating mobile Health technology use among cancer caregivers in the digital era.

Introduction: Digital health technology-based interventions have the potential to support cancer caregivers in caregiving responsibilities and in managing their own health and well-being. The objective of this study was to examine the association between caregiving characteristics and different types of digital health technologies used in a national sample of caregivers of patients undergoing hematopoietic cell transplantation (HCT). Methods: We conducted an online, cross-sectional survey of 948 HCT caregivers. Results: Spousal caregivers comprised nearly one-third of respondents (27.1%) with a median age of 59 years (range: 18-80 years), compared with parents (32.9%: 38 years), adult children (28.9%: 38 years), and other (11.1%; e.g. friend, other family member: 36 years). Almost two-thirds (65.4%) of all respondents reported using an app for fitness or step counting and 41.3% reported using a smartwatch. However, spousal caregivers were the least likely group to use mobile apps (0.72; P < 0.005) or smartwatches (OR = 0.46; P < 0.005) compared with parent caregivers in models adjusted for demographics and coping style. Caregiving for six months or greater was associated with the use of fewer apps compared with caregiving for less than six months in adjusted models (OR = 0.80, P < 0.005). Caregivers of patients receiving an allogeneic transplant (i.e. non-self-donor) used more apps on average than caregivers of patients receiving an autologous transplant (i.e. self-donor) in adjusted models (OR = 1.36, P < 0.005). Conclusion: Digital health technologies reflect promising avenues for supporting cancer caregivers. While digital technologies are becoming increasingly pervasive, older caregivers remain an underserved population. Future research should integrate older adult caregivers in the co-design and development activities of technology-driven caregiver support products.