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).

Health Care Team Interventions to Reduce Distress Behaviors in Older Adults: A Systematic Review.

OBJECTIVES: This review examines health care team-focused interventions on managing persistent or recurrent distress behaviors among older adults in long-term residential or inpatient health care settings. METHODS: We searched interventions addressing health care worker (HCW) knowledge and skills related to distress behavior management using Ovid MEDLINE, Elsevier Embase, and Ovid PsycINFO from December 2002 through December 2022. RESULTS: We screened 6,582 articles; 29 randomized trials met inclusion criteria. Three studies on patient-facing HCW interactions (e.g. medication management, diagnosing distress) showed mixed results on agitation; one study found no effect on quality of life. Six HCW-focused studies suggested short-term reduction in distress behaviors. Quality-of-life improvement or decreased antipsychotic use was not evidenced. Among 17 interventions combining HCW-focused and patient-facing activities, 0 showed significant distress reduction, 8 showed significant antipsychotic reduction (OR = 0.79, 95%CI [0.69, 0.91]) and 9 showed quality of life improvements (SMD = 0.71, 95%CI [0.39, 1.04]). One study evaluating HCW, patient-, and environmental-focused intervention activities showed short-term improvement in agitation. CONCLUSIONS AND CLINICAL IMPLICATIONS: Novel health care models combining HCW training and patient management improve patient quality of life, reduce antipsychotic use, and may reduce distress behaviors. Evaluation of intervention's effects on staff burnout and utilization is needed.

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.

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.

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.

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.

Adaptation and Implementation of a Family Caregiver Skills Training Program: From Single Site RCT to Multisite Pragmatic Intervention.

PURPOSE: We describe an approach to rapidly adapt and implement an education and skills improvement intervention to address the needs of family caregivers of functionally impaired veterans-Helping Invested Families Improve Veterans' Experience Study (HI-FIVES). DESIGN: Prior to implementation in eight sites, a multidisciplinary study team made systematic adaptations to the curriculum content and delivery process using input from the original randomized controlled trial (RCT); a stakeholder advisory board comprised of national experts in caregiver education, nursing, and implementation; and a veteran/caregiver engagement panel. To address site-specific implementation barriers in diverse settings, we applied the Replicating Effective Programs implementation framework. FINDINGS: Adaptations to HI-FIVES content and delivery included identifying core/noncore curriculum components, reducing instruction time, and simplifying caregiver recruitment for clinical settings. To enhance curriculum flexibility and potential uptake, site personnel were able to choose which staff would deliver the intervention and whether to offer class sessions in person or remotely. Curriculum materials were standardized and packaged to reduce the time required for implementation and to promote fidelity to the intervention. CONCLUSIONS: The emphasis on flexible intervention delivery and standardized materials has been identified as strengths of the adaptation process. Two key challenges have been identifying feasible impact measures and reaching eligible caregivers for intervention recruitment. CLINICAL RELEVANCE: This systematic implementation process can be used to rapidly adapt an intervention to diverse clinical sites and contexts. Nursing professionals play a significant role in educating and supporting caregivers and care recipients and can take a leading role to implement interventions that address skills and unmet needs for caregivers.

Rationale for Spiritually Oriented Cognitive Processing Therapy for Moral Injury in Active Duty Military and Veterans With Posttraumatic Stress Disorder.

Wartime experiences have long been known to cause ethical conflict, guilt, self-condemnation, difficulty forgiving, loss of trust, lack of meaning and purpose, and spiritual struggles. "Moral injury" (MI) (also sometimes called "inner conflict") is the term used to capture this emotional, cognitive, and behavioral state. In this article, we provide rationale for developing and testing Spiritually Oriented Cognitive Processing Therapy, a version of standard cognitive processing therapy for the treatment of MI in active duty and veteran service members (SMs) with posttraumatic stress disorder symptoms who are spiritual or religious (S/R). Many SMs have S/R beliefs that could increase vulnerability to MI. Because the injury is to deeply held moral standards and ethical values and often adversely affects spiritual beliefs and worldview, we believe that those who are S/R will respond more favorably to a therapy that directly targets this injury from a spiritually oriented perspective. An evidence-based treatment for MI in posttraumatic stress disorder that not only respects but also utilizes SMs' spiritual beliefs/behaviors may open the door to treatment for many S/R military personnel.

Direct Engagement With Communities and Interprofessional Learning to Factor Culture Into End-of-Life Health Care Delivery.

Aging patients with advanced or terminal illnesses or at the end of their lives become highly vulnerable when their cultural needs-in terms of ethnic habits, religious beliefs, and language-are unmet. Cultural diversity should be taken into account during palliative care delivery (i.e., noncurative, supportive care during advanced illness or at the end of life). Providers and systems deliver disparate palliative care to diverse patients. I present 2 strategies to improve how culturally diverse populations are served during advanced illness: (1) health service provider assessment of local populations to understand service populations' cultural needs and guide services and policy; and (2) interprofessional education to improve multicultural understanding among the health care workforce.

The benefits of expanded physician assistant practice in hospice and palliative medicine.

Patients with advanced or terminal illness, especially racial and ethnic minorities, would benefit from greater access to hospice and palliative care. Expanding the PA role in these areas would help fill gaps in both access and patients' understanding of what hospice and palliative care can offer. This article describes why hospice and palliative care are needed, what PAs can and do offer hospice and palliative care delivery, and what challenges should be overcome to expand PA practice in hospice and palliative care. The article also reviews the legislative outlook for PA practice in hospice care.

Health care and end-of-life decisions: community engagement with adults in East Harlem.

This was a model of community engagement for a Hispanic population in East Harlem, New York City to assess health care decision-making processes, with a focus on end-of-life decisions, among older men and women. The design involved two senior center-based semi-structured focus groups conducted in Spanish and English followed by a series of bilingual skills-building workshops focusing on situational decision-making. All program aspects were conducted between April and June of 2013. The themes for the workshops included: "Getting the most from your pharmacist encounter;" "How to prepare for your primary care visit;" and "I am getting discharged from the hospital: what do I do?" For the two focus groups, 21 community members participated, each of whom self-identified as Hispanic or Latina/o. Ten common themes emerged from a two-stage/two coder, grounded theory-based qualitative analysis and included: Where Community Members Receive Care; General Challenges, Cultural Challenges, and Benefits of Health Care in New York City/East Harlem; Key Facilitators in Health Care Decision Making; Key Facilitators in End-of-Life Decision Making; and Perceptions of Health Care Disparity. Themes and their subcategories, discussed herein, may offer guidance for area health providers and health care delivery entities. This project served as formative, qualitative data collection for a larger scale forthcoming community assessment while offering community benefit related to health decision-making, especially end-of-life decision making, in the context of a rapidly changing urban American health care delivery landscape. Application of this synergistic community benefit and data collection model is recommended for similar and other communities in the U.S. and other countries.

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.

"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.

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.

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.

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.

Cultivating Cultural Competence: How Are Hospice Staff Being Educated to Engage Racially and Ethnically Diverse Patients?

BACKGROUND: Compared to Whites, racial/ethnic minorities are less likely to enroll in hospice and if they enroll, more likely to experience poor quality care. Building cultural competence (CC) among hospice staff is a strategy that may reduce disparities. OBJECTIVE: To describe the state of CC training across hospices. DESIGN: National survey of hospices' practices to promote CC. RESULTS: A total of 197 hospices participated; most were not-for-profit (80%) with an average daily census less than 100 (47%); 73% offered staff cultural competence training (CCT). There were no differences in characteristics of hospices who offered CCT and those that did not. Of hospices offering CCT, 61% held it annually. Most trainings were 1 hour (60%); content was delivered via web (58%) and/or lecture (58%). While over 90% of staff (i.e., nurses, social workers, chaplains) completed CCT, a smaller proportion of medical directors (64%), senior leaders (71%) and board members (26%) did so. Most common topics were: cross-cultural communication, death/illness beliefs, spirituality's role, and healthcare disparities. The majority focused on African-Americans (83%), Hispanics (76%), and Asians (62%)-the most common U.S. minority groups. Almost 30% reported no effectiveness assessment of CCT, while 51% reported a quiz at the end of training. Most hospices offered some CCT. CONCLUSIONS: CCT has been shown to improve healthcare providers' knowledge and skills in caring for diverse patients and it is associated with increased patient satisfaction. Future research should evaluate effectiveness of CCT in improving the ability of hospices to deliver high quality end-of-life care to diverse groups of older adults.

"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.