"I've been doing this for years": the COVID-19 pandemic and family caregiver isolation and loneliness.

Background: Family caregivers are family members or friends of care recipients who assist with activities of daily living, medication management, transportation, and help with finances among other activities. As a result of their caregiving, family caregivers are often considered a population at risk of experiencing increased stress, isolation, and loneliness. During the COVID-19 pandemic in the US, social isolation and decrease in social activities were a top concern among older adults and their family caregivers. Using secondary analysis of survey data as part of a multi-site implementation trial of a caregiver skills training program, we describe differences in caregiver experiences of loneliness before and during the COVID-19 pandemic. Methods: Health and wellbeing surveys of family caregivers were collected on 422 family caregivers of veterans before and during COVID-19. Logistic regression modeling examined whether the loneliness differed between caregiver groups pre vs during COVID-19, using the UCLA 3-item loneliness measure. Rapid directed qualitative content analysis of open-ended survey questions was used to explore the context of how survey responses were affected by the COVID-19 pandemic. Results: There were no significant differences in loneliness between caregivers pre vs during COVID-19. In open-ended responses regarding effects of COVID-19, caregivers described experiencing loneliness and social isolation; why they were unaffected by the pandemic; and how caregiving equipped them with coping strategies to manage negative pandemic-related effects. Conclusion: Loneliness did not differ significantly between pre vs during COVID-19 caregivers. Future research could assess what specific characteristics are associated with caregivers who have resiliency, and identify caregivers who are more susceptible to experiencing loneliness. Understanding caregiver loneliness could assist other healthcare systems in developing and implementing caregiver support interventions.

Barriers to and Facilitators of Pediatric Vaccination Reporting in Four US States, 2023.

In a 2023 sequential explanatory mixed-methods study in four US states, we identified barriers and facilitators experienced by Vaccines for Children (VFC) program providers in reporting vaccination data to state immunization information systems (IISs). We found the following: VFC providers value accurate, robust, and widely used IISs. IIS reporting is easier with but does not require an electronic health record. Negative interactions with IISs and VFC officials and limited practice capacity are barriers to reporting. The COVID-19 pandemic highlighted the need for a nationwide vaccination database. (Am J Public Health. 2024;114(6):569-574. https://doi.org/10.2105/AJPH.2024.307638).

Frontline Clinician Appraisement of Research Engagement: "I feel out of touch with research".

BACKGROUND: Health services research can benefit from frontline clinician input across all stages of research, yet their key perspectives are often not meaningfully engaged. OBJECTIVE: How can we improve clinician engagement in research? DESIGN: Convenience sampling and semi-structured interviews followed by descriptive content analysis with an inductive approach, followed by group participatory listening sessions with interviewees to further contextualize findings. PARTICIPANTS: Twenty-one multidisciplinary clinicians from one healthcare system. KEY RESULTS: We identified two major themes: perceptions of research (how research fits within job role) and characterizing effective engagement (what works and what does not work in frontline clinician engagement). "Perceptions of Research" encompassed three subthemes: prior research experience; desired degree of engagement; and benefits to clinicians engaging in research. "Characterizing Effective Engagement" had these subthemes: engagement barriers; engagement facilitators; and impact of clinician's racial identity. CONCLUSIONS: Investing in frontline clinicians as research collaborators is beneficial to clinicians themselves, the health systems that employ them, and those for which they care. Yet, there are multiple barriers to meaningful engagement.

Training Health Care Practitioners to Include Family Caregivers With Web-Based Learning Modules.

Background Caregivers play a key role in supporting patient health; however, they have largely been excluded from participating in health care teams. This paper describes development and evaluation of web-based training for health care professionals about including family caregivers, implemented within the Department of Veterans Affairs Veterans Health Administration. Systematically training health care professionals constitutes a critical step toward shifting to a culture of purposefully and effectively utilizing and supporting family caregivers for better patient and health system outcomes. Methods Module development included Department of Veterans Affairs health care stakeholders and consisted of preliminary research and a design approach to set the framework, followed by iterative, collaborative team processes to write the content. Evaluation included pre- and postassessments of knowledge, attitudes, and beliefs. Results Overall, 154 health professionals completed pretest questions and 63 additionally completed the posttest. There was no observable change in knowledge. However, participants indicated a perceived desire and need for practicing inclusive care as well as an increase in self-efficacy (belief in their ability to accomplish a task successfully under certain conditions). Conclusion This project demonstrates the feasibility of developing web-based training to improve the beliefs and attitudes of health care professionals about inclusive care. Training constitutes one step toward shifting to a culture of inclusive care, and research should identify longer-term effects and other evidence-based interventions.

Mandated Caregiver Training in the Veterans Health Administration: Caregiver Inquiry Informs National Dissemination.

BACKGROUND AND OBJECTIVES: A minority of family caregivers receive training, with implications for their own and their recipient's outcomes. Federal policy has supported the implementation and expansion of caregiver training and support. The Department of Veterans Affairs (VA) has developed a national Caregiver Support Program and collaborated with VA health services researchers to explore caregivers' acceptance of an evidence-based training program in preparation for system-wide dissemination. RESEARCH DESIGN AND METHODS: This approach entailed a convergent mixed-methods design, which involved separate analyses of quantitative and qualitative data. Survey questions based on the Kirkpatrick model for training evaluation measured caregivers' reaction and learning, and interview questions elicited caregivers' reports about the value of the program for them. RESULTS: Most caregivers reported satisfaction with the training when responding to survey questions, although qualitative interviews revealed caveats suggesting need to hone the best timing and specific group of caregivers for maximal benefit. DISCUSSION AND IMPLICATIONS: Our findings indicate that understanding program-user fit may be particularly critical when implementing training for caregivers as they come to the program at different points along their caregiving journey, needing differing types and intensities of support. While a general program may appeal to policymakers aiming to scale caregiver training within a large, heterogeneous system, there may be shortcomings in terms of end-user acceptance and subsequent downstream outcomes such as reach and ultimately program effectiveness. Good, iterative communication flow between program developers and policymakers facilitates this understanding and, in turn, decisions about scaling.

Caregiving in U.S. Gulf States During Natural Disasters and COVID-19.

Objectives: To ascertain common experiences and needs of a diverse group of caregivers challenged by hurricanes/floods and COVID-19. Methods: In-depth interviews with unpaid caregivers in U.S. Southeast/Gulf Coast states who had experienced caregiving during a natural disaster and during COVID-19. Results: Caregivers report challenges including daily living disruption, altered social supports, complicated health management, additional disaster planning, and emotional/financial impacts. Caregivers suggested helpful resources, policy options, and preparatory tools at individual, local, and health system levels to mediate discontinuity. Conclusions: Our data describe combined caregiver experiences of hurricanes/floods and the pandemic. Caregivers experience unique burdens related to care recipient diagnosis, location, and veteran status. Access to community supports varies as they manage the tasks required for care recipients' health and safety. Our findings indicate the need for public health reinforcement of caregiving though caregiver pre-planning and targeted support. Bolstering understanding of communities' caregiving capacity though first responder trainings and caregiver registries may enhance health and safety.

Older Caregivers: Who They Are and How to Support Them.

Caregivers play a crucial role in providing health and social supports to their family and friends. Older adults who take on caregiving roles are themselves uniquely vulnerable to negative health and financial effects due to their age and underlying health risks. Many caregivers do not receive adequate support - either formally or informally - exacerbating the strains of providing care. Racial and ethnic minority caregivers may be less likely to report receiving support in their role and face additional challenges. We describe these caregivers over 65 and the burdens they face. We recommend community health workers, direct compensation, and normalization of respite care to support these essential care workers in their role and as they age.

Needs of care partners of older Veterans with serious illness.

BACKGROUND: The quality of life of care partners and care recipients may be improved by programs that address unmet needs. The aim of this qualitative study was to identify care partners' social and practical needs as they care for Veterans (65 yo+) with serious illness. METHODS: Semi-structured interviews with Veterans with serious illness and care partners of Veterans with serious illness. Interview question domains examined through care partner and Veteran perspectives included: types of support/services currently used, still needed, and anticipated as well as barriers to obtaining those supports/services. Qualitative analyses used an inductive descriptive content approach. RESULTS: Seventeen care partners and 11 Veterans participated. Three main themes emerged from the data: (I) care partners' and Veterans' identified barriers to support (e.g., technology, rurality, awareness of services); (II) care partners' and Veterans' understanding of available supports and services (e.g., misunderstandings regarding VA role and services, heavy reliance on VA, identified sources of support); and (III) care partners' understanding of their caregiving roles (e.g., by tasks and self-identification). CONCLUSION: Results indicate that care partners experience barriers to supporting seriously ill Veterans including awareness, information, and access obstacles that can be addressed to improve access and utilization of available services and supports.

"That Little Bit of Time": Transition-to-Hospice Perspectives From Hospice Staff and Bereaved Family.

BACKGROUND AND OBJECTIVES: Many patients lack understanding of hospice services and their preparation for the transition to hospice at home may be insufficient. This study explored how hospice admissions staff and caregivers of hospice patients perceive the hospice admission process and the transition to hospice at home. RESEARCH DESIGN AND METHODS: We conducted in-depth, semistructured interviews with 2 subgroups: hospice admissions staff (n = 15) and bereaved caregivers of former hospice patients (n = 20). We performed a 3-coder descriptive content analysis. RESULTS: There were 4 overall themes: (a) issues relating to the referring/prehospice provider, (b) issues relating to hospital discharge/care transition home, (c) issues relating to the first touch of hospice, and (d) the impact of coronavirus disease 2019 (COVID-19) on hospice admissions. Patients are often referred to hospice without clear prognostic understanding, at times placing staff in the uncomfortable position of breaking difficult news. Stigma may make patients and families fearful of enrolling in hospice, and misconceptions about hospice are common. Caregivers emphasize the need for increased attention to their emotional needs. Staff revealed the emotional challenges they experience conducting admissions. Both staff and caregivers indicate that the transition to hospice is often emotionally and logistically burdensome, especially when discharging home from the hospital. Both subgroups report insufficient caregiver preparation for taking care of a dying patient at home, particularly regarding medication management. COVID-19 created challenges yet prompted innovative changes to hospice admission processes. DISCUSSION AND IMPLICATIONS: Findings demonstrate a need to improve the hospice admissions process, better supporting terminally ill patients and their families.

Parents of Children With Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study.

OBJECTIVES: To develop a conceptual framework to understand and define the impact of DSD diagnosis and management from the perspective of parents of recently diagnosed children. METHODS: Semi-structured interviews were conducted with parents of children diagnosed with 46 XX, 46 XY, or chromosomal DSD including complete or partial androgen insensitivity, congenital adrenal hyperplasia, or 5-alpha reductase deficiency. Analysis was completed using content analysis with an inductive approach by three coders. RESULTS: Parents of 6 patients agreed to be interviewed, consistent with saturation points for prior similar studies; a total of 16 recurring themes were identified which were further grouped by similarity and categorized into 1 of 3 meta-themes: a) personal impact (effect of diagnosis on parents psyche, happiness, gender/sexual identity, anatomic function, mental health), b) family impact (relationships with parents/siblings, parental guilt); and c) societal impact (bullying, need for secrecy, future desirability, societal openness to DSD individuals). CONCLUSIONS: Personal, family, and societal concerns amongst parents following a DSD diagnosis have significant potential psychosocial impacts for both parents as well children. The nexus between these categories provides a framework for approaching diagnosis and management of DSD and has implications for patients, families, and clinicians. Improved resource allocation, education, and clinical tools conceived through this framework may considerably alleviate potent psychosocial stressors for parents of children born with DSD.

Developing the Future End-of-Life Health Care Workforce: Lessons Learned From a Survey of Advanced Health Professions Students.

OBJECTIVE: To examine health professions trainees' end-of-life (EOL) care knowledge, attitudes, and intentions. METHODS: IRB-approved online survey of 346 students/5 universities in final training years-public health, pharmacy, physician, physician assistant, occupational therapy, and physical therapy (April-May 2016). Queried knowledge, attitudes, and intentions toward EOL care. RESULTS: Sufficient knowledge of palliative care was reported by 25% while sufficient knowledge of advance care planning (ACP) was 17%. Ninety-six percent thought it important to discuss EOL issues in training; 92% believed their professions played important roles in EOL care. Managing pain was chosen as the best example of palliative care by 93.6% and designating healthcare proxies was reported as the best example of ACP (5.8%). Pharmacy, public health, and rehabilitation therapy students were less likely than physician and physician assistant trainees to report intent to work in EOL care. Among those who want to work in EOL care, 65% reported having clinical experience with seriously ill or dying patients/clients. We discuss other findings related to perceptions of didactic preparation in palliative care, palliative care knowledge access/function, death/dying attitudes, and intentions toward seriously illness care. DISCUSSION: There is interest in and knowledge of palliative care, including EOL care, among multiple health professions. Provides guidance for how we train health professionals to improve population health by optimizing EOL care.

Developing a person-centered, population based measure of "home time": Perspectives of older patients and unpaid caregivers.

Measuring "home time," number of days not in facility-based care, with medical claims is a promising approach to assess person-centered outcomes on a population level. Generally, spending more time at home matches long-term care preferences and improves quality of life. However, existing "home time" measures have not incorporated key stakeholder perspectives. We sought to understand how patients and family caregivers value time spent in diverse facility-based health care settings (Emergency Department, Nursing Home, Post-Acute Care/Skilled Nursing, Inpatient Hospital) to help determine whether various settings have different effects on quality of life and thus merit different weighting in a "home time" measure. We conducted three focus groups among patients and family caregivers within the U.S. Veterans Health Care System. We identified themes pertaining to patients' quality of life in each of the four facility-based care settings. Discussions about both emergency department and post-acute/skilled nursing care reflected loss of personal control, counterbalanced by temporary stay. Inpatient hospital care evoked discussion about greater loss of personal control due to the intensity of care. Nursing homes ultimately signified decline. These findings illuminate differences in quality of life across health-care settings and help justify the need for different weights in a measure of "home time."

Family Caregiver and Provider Perspectives on Inclusive Care: Aligning Needs and Expectations.

BACKGROUND: Home-based and community-based health care for individuals with complex medical conditions is often provided by family caregivers. Yet caregivers often are not meaningfully included in interactions with clinical health care teams. Inclusive care means inviting the caregiver to participate in shared decision-making and treatment planning. For aging or medically vulnerable adults, caregiver inclusion is an important facet of patient-centered care. METHODS: We apply a mixed-methods approach using a survey (n=50) and semistructured interview data (n=13) from a national sample of caregivers of veterans and semistructured interview data from (n=24) providers from 3 Veterans Affairs regional networks. We elicited data from caregivers about their experiences with inclusive care and how providers communicate with them and assess their capacity. We juxtaposed these data with provider perspectives to see where there was alignment. FINDINGS: We determined that caregivers play important roles in trust-building, communications management, implementation of care plans at home or in the community, and improving the care of care recipients-while maintaining a balance between competing tensions. CONCLUSIONS: Our findings suggest that expanding inclusive care could improve care quality and health outcomes of individuals with complex health care needs. Further, our findings bolster recent policy efforts at the federal and state levels to increase recognition of caregivers as key members of the health care team.

Investigating Barriers to Vaccination Among Durham County's Vulnerable Populations.

BACKGROUND: As antivaccination movements increase in the United States, underlying structural barriers to vaccination are often ignored. This study examines barriers to vaccination in an adult population to uncover factors leading to vaccination rates in underserved populations. METHODS: This study was approved by the Duke University Campus Institutional Review Board. Fifty-four patients at the Adult Immunizations Clinic of the Durham County Department of Public Health were interviewed throughout June and July 2019. Subjects were enrolled on a voluntary basis followed by oral consent. Eligible subjects included English-speaking adults receiving vaccines aged 19 or older. Anonymous and confidential interviews were conducted verbally. RESULTS: This study found that a large proportion of study participants were referred by their provider to receive vaccines at the health department. It was also found that having a provider appeared to lead to a decrease in vaccine hesitancy. Enhanced patient understanding of vaccines was not necessarily contributing to the apparent decrease in vaccine hesitancy. Patients who understood the importance of public health had the same rate of vaccine hesitancy as those who had no reason for receiving vaccines. LIMITATIONS: External validity is limited due to small sample size. CONCLUSIONS: Health care providers may play an essential role in reducing vaccine hesitancy. However, increases in vaccine uptake due to provider-level interventions may not necessarily be due to an enhanced understanding of vaccines or their importance to public health.

Insurance Barriers, Gendering, and Access: Interviews with Central North Carolinian Women About Their Health Care Experiences.

BACKGROUND: Women face unique logistical and financial barriers to health care access. They also have higher health care expenditures and higher rates of morbidity. Women's experiences while utilizing health care are historically less well researched and warrant exploration. METHODS: We conducted 14 semistructured interviews about women's health care experiences with 11 women health consumers and 3 women health care practitioners in central North Carolina. RESULTS: When discussing their experiences, participants noted scheduling challenges, barriers related to insurance and cost, and dismissive or negative in-person encounters. Participants frequently discussed lack of resources for care postpartum. Practitioners noted lack of knowledge of disease burden, overmedicalization of women's care, lack of care postpartum, and trends around changes in primary care.Women health consumers in this study faced challenges related to access and in-person experience of care delivery, which were echoed by the clinician interviewees. Barriers to optimal women's health care exist even for those with insurance coverage and point to systemwide constraints as well as deficits in organizational culture. CONCLUSION: Future clinical and research efforts should include 1) increasing awareness of and facilitating access to affordable postpartum care, 2) easing burdens around scheduling appointments and improved care coordination, and 3) more research exploring women's experiences during in-person health care encounters. Concerns and barriers that women described may be due to systems-level requirements and constraints.

"He Needed Just About Everything": Caring for Aging Adults Postincarceration.

METHODS: We conducted a thematic analysis on semi-structured interviews with 11 caregivers. RESULTS: Caregivers discussed how prior incarceration coupled with aging present barriers to housing, employment, and safety-net benefits-making caregiving more difficult. Caregivers assist their older care recipients to develop essential life skills (e.g., scheduling tasks, applying for services) and navigate the dynamic aging process (e.g., loneliness, illness). Caregivers struggle to gain care recipients' trust, often due to their past trauma. DISCUSSION: Caregivers play essential roles supporting older adults postincarceration, yet they experience significant challenges with limited resources. This study informed the development of a resource guide to assist caregivers. Dedicated programs and policies are needed to address these needs at the local level.

COVID-19: The Time for Collaboration Between Long-Term Services and Supports, Health Care Systems, and Public Health Is Now.

Policy Points To address systemic problems amplified by COVID-19, we need to restructure US long-term services and supports (LTSS) as they relate to both the health care systems and public health systems. We present both near-term and long-term policy solutions. Seven near-term policy recommendations include requiring the uniform public reporting of COVID-19 cases in all LTSS settings; identifying and supporting unpaid caregivers; bolstering protections for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing barriers to telehealth in LTSS; and providing incentives to care for vulnerable populations. Long-term reform should focus on comprehensive workforce development, comprehensive LTSS financing reform, and the creation of an age-friendly public health system. CONTEXT: The heavy toll of COVID-19 brings the failings of the long-term services and supports (LTSS) system in the United States into sharp focus. Although these are not new problems, the pandemic has exacerbated and amplified their impact to a point that they are impossible to ignore. The primary blame for the high rates of COVID-19 infections and deaths has been assigned to formal LTSS care settings, specifically nursing homes. Yet other systemic problems have been unearthed during this pandemic: the failure to coordinate the US public health system at the federal level and the effects of long-term disinvestment and neglect of state- and local-level public health programs. Together these failures have contributed to an inability to coordinate with the LTSS system and to act early to protect residents and staff in the LTSS care settings that are hotspots for infection, spread, and serious negative health outcomes. METHODS: We analyze several impacts of the COVID-19 pandemic on the US LTSS system and policy arrangements. The economic toll on state budgets has been multifaceted, and the pandemic has had a direct impact on Medicaid, the primary funder of LTSS, which in turn has further exacerbated the states' fiscal problems. Both the inequalities across race, ethnicity, and socioeconomic status as well as the increased burden on unpaid caregivers are clear. So too is the need to better integrate LTSS with the health, social care, and public health systems. FINDINGS: We propose seven near-term actions that US policymakers could take: implementing a uniform public reporting of COVID-19 cases in LTSS settings; identifying and supporting unpaid caregivers; bolstering support for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing the barriers to telehealth in LTSS; and providing incentives to care for our most vulnerable populations. Our analysis also demonstrates that our nation requires comprehensive reform to build the LTSS system we need through comprehensive workforce development, universal coverage through comprehensive financing reform, and the creation of an age-friendly public health system. CONCLUSIONS: COVID-19 has exposed the many deficits of the US LTSS system and made clear the interdependence of LTSS with public health. Policymakers have an opportunity to address these failings through a substantive reform of the LTSS system and increased collaboration with public health agencies and leaders. The opportunity for reform is now.

No Hugs Allowed: Isolation and Inequity in North Carolina Long-term Services and Supports During COVID-19.

Four in 10 COVID-19 cases and deaths in North Carolina have occurred in long-term care facilities. The virus has contributed to increased health complications and financial stressors for recipients of long-term care services and supports and their caregivers, negatively affecting the quality of care received and contributing to already existing social isolation.

Hospice Access and Scope of Services for Undocumented Immigrants: A Clinician Survey.

Objectives: To characterize clinician experiences of hospice access and scope of services for undocumented immigrants. Background: The 10.5 million undocumented immigrants in the United States are not covered by Medicare's hospice benefit and are at high risk for being uninsured. Limited data are available regarding hospice services for this population. Setting/Subjects: Two hundred ninety-four interdisciplinary palliative care clinicians from across the United States. Measurements: Participants completed a web-based survey regarding hospice access and scope of services for undocumented immigrants in their location. We used simple frequencies to report clinician responses and chi-square analysis to evaluate associations between response and location. We performed rapid qualitative analysis of free-text responses to identify common limitations in scope of services. Results: A majority of clinicians (68%) perceived that access to hospice was limited or unavailable for undocumented immigrants in their location, and among respondents who provided data regarding hospice scope, 38% reported that services provided to undocumented immigrants were limited compared to those provided to other patients. Reports of restricted access and scope varied by region, and those in large metropolitan areas were more likely to report restricted scope of care than those in smaller towns (43% vs. 28%; p = 0.03). In our qualitative analysis of free-text responses, common limitations in hospice scope included reduced access to medications and equipment, inability to access inpatient hospice, inadequate translation services, reduced staffing, and restricted duration of services. Conclusions: Undocumented immigrants may face barriers in accessing comprehensive hospice services. Public policy changes that improve access to hospice may improve end-of-life care for undocumented immigrants.

Inclusion of Caregivers in Veterans' Care: A Critical Literature Review.

More direct inclusion of informal caregivers (i.e., family, friends) in patients' care will make care more patient- and family-centered and has the potential to improve overall quality of care for patients. We need to understand what potentially comprises "inclusive care" so that we can define what "inclusive care" is and develop targets for care quality metrics. We conducted a critical literature review to identify key components of "caregiver inclusion." Focusing on extant literature from 2005 to 2017, 35 papers met inclusion criteria. Directed content analysis with constant comparison was used to identify major themes related to a concept of "inclusive care." Our analysis indicates that "inclusive care" entails five components: clear definition of caregiver role, system level policies for inclusion, explicit involvement of caregiver, provider assessment of caregiver capability, and mutuality in caregiver-provider communication. We discuss the evidence behind these five components using the Donabedian health care quality conceptual model.