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The purpose of this study was to evaluate Asian American caregivers' experiences and concerns related to clinical trials and the types of information they trust, use, and prefer before enrolling their older relative in a clinical trial. We conducted an online, cross-sectional survey with Asian American family caregivers between July 2022 and April 2023. Of all respondents (n = 98), 62.2% reported knowing only a little about clinical trials. Respondents expressed wanting information about (a) the purpose, design, and components of the trial; (b) trial research ethics and safety; and (c) their responsibilities as the caregiver. Greater engagement between clinicians and family caregivers of culturally diverse older adults could help minimize sociocultural barriers to participation in clinical trials. Providing key information to family caregivers in a comprehensive and accessible way without adding burden could help caregivers understand their responsibilities through the clinical trial process.
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BACKGROUND: Four Black early-career faculty members, one Black doctoral student, and a Black senior faculty member, (herein referred to as scholars), previously engaged in cross-cultural mentoring with a White senior researcher to bolster their scholarship. PURPOSE: In the years following the 2020 racial reckoning, the scholars were motivated to reconvene by the realization that traditional scholarship activities of academia ignore historical educational oppression and fail to account for the contemporary effects of racism and discrimination rooted in American colonialism. METHODS: Collaborative autoethnography, a decolonizing qualitative approach to research, was used to explicate our journeys in academia. The tenets of Freire's critical pedagogy (conscientização, scholarship, praxis) framed our collective experiences. DISCUSSION: We describe resisting academic structures of power, discrimination, and disadvantage through reformation, crafting a vision statement, and utilizing positions of influence. CONCLUSION: To decolonize nursing academia, we implore the scholarly community to pursue liberation and contest structures that center Whiteness and marginalize collectivism and collaboration.
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The intricacies of the unique educational and leadership development trajectories of Black PhD-prepared nurse scientists are largely invisible in nursing faculty development literature. A broadened understanding of nursing leadership development and science mentorship can facilitate support for the next generation of Black nurse scientists. Historically Black Colleges and Universities (HBCUs) can serve as formative launch pads for nurse scientist development. However, the role of HBCUs and strategies for supporting robust educational and mentor/training opportunities for Black PhD-prepared nurse scientists require thoughtful description and application. Incorporating an intrapersonal, interpersonal, and integrative leadership framework, we describe and synthesize four Black nurse scientists and HBCU graduates' experiences to highlight early science mentorship and leadership resilience through the excellent educational foundations provided at HBCUs.
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Negro ou Afro-Americano , Docentes de Enfermagem , Liderança , Universidades , Humanos , MentoresRESUMO
Purpose of Review: Preparing for pandemics requires a degree of interdisciplinary work that is challenging under the current paradigm. This review summarizes the challenges faced by the field of pandemic science and proposes how to address them. Recent Findings: The structure of current siloed systems of research organizations hinders effective interdisciplinary pandemic research. Moreover, effective pandemic preparedness requires stakeholders in public policy and health to interact and integrate new findings rapidly, relying on a robust, responsive, and productive research domain. Neither of these requirements are well supported under the current system. Summary: We propose a new paradigm for pandemic preparedness wherein interdisciplinary research and close collaboration with public policy and health practitioners can improve our ability to prevent, detect, and treat pandemics through tighter integration among domains, rapid and accurate integration, and translation of science to public policy, outreach and education, and improved venues and incentives for sustainable and robust interdisciplinary work.
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The purpose of the current study was to identify stressors of Black family caregivers (FCGs) of persons with memory problems (PWMPs), services of interest, and barriers to use of these services. Black FCGs were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and affiliated geriatric clinics, media sources, and word-of-mouth referrals. Of 38 Black FCGs interviewed, 26 (68%) were female, 18 (47%) were employed, and 21 (55%) were adult children. Average age of FCGs was 52.11 years. Mean scores for the AD8 Dementia Screening Scale (mean = 13.95, SD = 2.17) and Clinical Dementia Scale Sum of Boxes (mean = 7.29, SD = 0.87) were higher than clinical cutoffs. The most common stressors for Black FCGs were PWMPs' inability to remember who they were, managing care recipients' financial affairs, and managing PWMPs' comorbid conditions. FCGs were most interested in educational material regarding treatment and diagnosis (55.3%), caring for people with dementia (52.6%), understanding dementia (52.6%), and financial/legal services (52.6%). FCGs stated that transportation difficulties and the need for a relief person were barriers to use of services. Results suggest that Black FCGs may be more likely to participate in interventions that include virtual conferencing modalities. [Journal of Gerontological Nursing, 48(6), 13-18.].
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Cuidadores , Demência , Filhos Adultos , Idoso , Demência/terapia , Feminino , Humanos , MasculinoRESUMO
Despite a national vaccination effort prioritizing frontline healthcare workers, COVID-19 vaccination rates among nurses have been lower than necessary to protect workforce and patient health. Historically, nurses have been more vaccine hesitant than other healthcare workers. To assess the vaccine attitudes and COVID-19 vaccine intent of California's registered nurses, we conducted a statewide cross-sectional survey among 603 licensed RNs working in direct patient care. Of 167 respondents (27.7%), 111 met inclusion criteria. Their mean score of 3.01 on a 6-point rating scale on the Vaccine Attitudes Examination scale measuring general vaccine hesitancy was comparable to previous findings among U.S. West Coast adults. Greater vaccine hesitancy was significantly associated with lower COVID-19 vaccine intent, after controlling for relevant confounders. Since nurses make up the largest portion of the healthcare workforce, it is crucial to specifically address this group's vaccine hesitancy.
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Stress is a significant part of daily life, and systemic social inequities, such as racism and discrimination, are well-established contributors of chronic stress for African Americans. Added exposure to the stress of caregiving may exacerbate adverse health outcomes. This secondary analysis describes subjective and objective stress in African American family caregivers, and relationships of subjective and objective stress to health outcomes. Baseline data from 142 African American dementia family caregivers from the "Great Village" study were described using means and frequencies; regression models and Pearson's correlation were used to examine associations between demographics, social determinants of health, and health outcomes. Mixed models were used to examine change and change variation in cortisol. Most caregivers had moderate degrees of stress. Stress was associated with sleep disruption and depressive symptoms, and discrimination appeared to be an independent contributor to depressive symptoms. This work provides a foundation for interpreting subjective and objective indicators of stress to tailor existing multicomponent interventions.
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Negro ou Afro-Americano , Demência , Cuidadores , Humanos , Hidrocortisona , Estresse PsicológicoRESUMO
Currently, over 16 million dementia caregivers in the US provide over 18 billion hours of care. As the number of persons living with dementia increases, so too will the number of family caregivers. Given the projected steady growth in caregivers and their health-related needs in caring for persons living with Alzheimer disease and related dementias, several initiatives are underway that focus on caregivers. One overlooked mechanism to meet caregiver needs is the National Institute on Aging's Alzheimer's Disease Research Centers (ADRCs). Through secondary analysis, we present a picture of dementia caregiving from the National Alzheimer's Coordinating Center's database and discuss a call to action for ADRCs to engage caregivers and further support the mission of the ADRC to advance the field of dementia research.
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Doença de Alzheimer , Cuidadores , Doença de Alzheimer/terapia , HumanosRESUMO
African American Alzheimer's disease and related dementia (ADRD) family caregivers are understudied in intervention research with discrepant evidence existing on their mental and physical health outcomes. The stress toll of ADRD caregiving, coupled with the well-documented health disparities for African Americans, place these caregivers at higher risk for morbidity and mortality.Objectives: The purpose of this study was to explore African American ADRD family caregivers' perceptions of caregiving and self-care.Design: Qualitative descriptive study based on individual, one-time, semi-structured interviews from a purposeful sample of current/former African American ADRD community-dwelling family caregivers. Participants agreed to either face-to-face or telephonic interviews between 60 and 90 minutes in length.Results: Twenty-one caregiver interviews were conducted with primarily adult children (mean age = 62.61 (SD = 12.88); 81% completed college; 57% women). Content analysis yielded three major themes: Stressors, Resources, and Coping. The results demonstrate a complex interaction of sociocultural and environmental stressors and perceptions of resources that influence the coping strategies adopted by caregivers to navigate their caregiving experience.Conclusions: These findings suggest a broadened perspective to further inform the development and testing of interventions to address the health outcomes and caregiving needs of African American ADRD caregivers.
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Doença de Alzheimer , Cuidadores , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Negro ou Afro-Americano , Pesquisa Qualitativa , Autocuidado , Filhos AdultosRESUMO
The pandemics of COVID-19 and systemic racism highlighted health inequities that have existed for decades among Black communities. Nurses are positioned to address these health inequities through innovative ideas and research. More specifically, Black nurses, because of their shared lived experience, understand sociostructural factors underpinning health inequities and how to best engage with Black communities. However, only 8% of Black nurses make up the overall nursing workforce and far fewer are nurse scientists. Historically Black Colleges and Universities (HBCUs) can offer critically important options for success in addressing the dearth of Black nurse scientists working across sectors and contributing to rich academic milieu, informing innovative national policy, and creating impactful practice. We discuss challenges and strategies to promoting research careers at HBCUs to attract Black nurse scientists as the next leaders in health inequities research.
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Negro ou Afro-Americano , Educação em Enfermagem , Pessoal de Laboratório/provisão & distribuição , Liderança , Enfermeiras e Enfermeiros/provisão & distribuição , Universidades , Pesquisa Biomédica , COVID-19 , Humanos , RacismoRESUMO
Background: Cleaning staff in hospitals can spend an average of 10-20 min per day per patient room. Published literature shows a pattern of interactions between housekeepers and patients, and that they believe themselves to be a part of the patient care team. To date, no study about this phenomenon has been done in the United States or has framed them through the lens of patient care. Objective: To describe the experiences and perceptions of hospital housekeeping staff in relation to patient care. Design: Qualitative descriptive. Setting: A 625-bed tertiary, academic medical center in the United States. Participants: Eight housekeeping staff participated, ranging from 40 to 62 years old, from diverse cultural and ethnic backgrounds, and worked at the study hospital from 4 months to 20 years. Interviews were conducted between September 2020-October 2020. Participants were recruited through flyers, email, and snowball sampling. Data were collected through semi-structured, in-depth interviews lasting 30 - 60 min. Data were analysed through thematic analysis using a 6-step framework that included data familiarization, generation of initial codes, search for themes, review of data, definition and naming of themes, and generation of a written report. Trustworthiness of the data was established through strategies such as reflective journaling, researcher triangulation and member-checking. Results: Three themes emerged: 1) "Here to take care of you" 2) Difficulties & Coping: and 3) Perceptions of their role. These three themes provide insight into participants' perceptions of patient interactions and the kind of connections they formed with patients as they went about their duties. Conclusions: Study findings suggest that there exists among housekeeping staff a respect for the humanity of patients, a duty to protect people from disease, and a longstanding practice of engaging in therapeutic connections with patients. As noted elsewhere, there remains a disparity between the importance of this role and the recognition and dignity afforded it. These results reveal an opportunity to expand our understanding of who we call a caregiver, and to improve how we recognize and support each member of the healthcare team.
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Greater family caregiver exposure to uncontrolled patient symptoms is predictive of greater caregiver psychological and physiological stress in dementia and other chronic illnesses, but these phenomena have not been well-studied in heart failure (HF) - a disease with high symptom burden. The purpose of this study was to test the hypothesis that worse patient functional status (as reflected by increasing HF symptoms) would be associated with elevated psychological and physiological stress for the caregiver. This was a secondary analysis of data from 125 HF caregivers in the Caregiver Opportunities for Optimizing Lifestyle (COOL) study. Psychological stress was measured on four dimensions: care-related strain/burden (Oberst Caregiving Burden Scale), depression (Center for Epidemiological Studies Depression Scale), anxiety (State-Trait Anxiety Index), and general stress (Perceived Stress Scale). Physiological stress was measured by markers of HPA axis function (elevated cortisol awakening response [CAR]), endothelial dysfunction (increased PAI-1), and inflammation (increased IL-6, hsCRP). HF patient functional status was quantified by caregiver assessment of New York Heart Association (NYHA) Class. Generalized linear models were used to test associations between patient NYHA Class and stress (one model per indicator). NYHA Class (ordinal) was backwards difference coded in each model to examine caregiver stress in relation to increasing levels of HF severity. Caregivers were mostly female and in their mid-fifties, with a slight majority of the sample being African American and the patient's spouse. Overall, patient functional status was associated with greater caregiver psychological and physiological stress. In terms of psychological stress, higher NYHA Class was significantly associated with greater caregiver anxiety and general stress, but not with caregiver burden or depression. In terms of physiological stress, higher NYHA Class was associated with elevated markers in all models (elevated CAR and higher IL-6, hsCRP, and PAI-1). Across models, most associations between NYHA Class and stress were present at relatively early stages of functional limitation (i.e. Class II), while others emerged when functional limitations became more severe. To inform timing and mechanisms for much-needed caregiver interventions, research is needed to determine which aspects of HF symptomatology are most stressful for caregivers across the HF trajectory.
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Cuidadores , Saúde da Família , Insuficiência Cardíaca , Sistema Hipotálamo-Hipofisário , Sistema Hipófise-Suprarrenal , Proteína C-Reativa , Cuidadores/psicologia , Feminino , Humanos , Interleucina-6 , Masculino , Pessoa de Meia-Idade , Inibidor 1 de Ativador de PlasminogênioAssuntos
Alostase , Negro ou Afro-Americano , Idoso , Biomarcadores , Humanos , Fatores Socioeconômicos , Estresse PsicológicoRESUMO
Among adults ages 65 and older, dementia doubles the risk of hospitalization. Roughly one in four hospitalized patients has dementia, and the prevalence of dementia in the United States is rising rapidly. Patients with dementia have significantly higher rates of hospital-acquired complications, including urinary tract infections, pressure injuries, pneumonia, and delirium, which when unrecognized and untreated can accelerate physical and cognitive decline, precipitating nursing home placement and death. The authors discuss the unique needs of patients with dementia who require acute care, highlighting evidence-based strategies for nurses to incorporate into practice.
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Demência/enfermagem , Assistência Centrada no Paciente , Guias de Prática Clínica como Assunto , Idoso , Comunicação , Delírio/diagnóstico , Delírio/tratamento farmacológico , Feminino , Hospitalização , Humanos , Casas de Saúde , Pneumonia/diagnóstico , Infecções Urinárias/complicaçõesRESUMO
This article presents a comprehensive conceptual framework designed to foster research in the changing needs of caregivers and persons with dementia as they move through their illness trajectory. It builds on prior theoretical models and intervention literature in the field, while at the same time addressing notable gaps including inadequate attention to cultural issues; lack of longitudinal research; focus on primary caregivers, almost to the exclusion of the person with dementia and other family members; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers' quality of life. The framework emphasizes the intersectionality of caregiving, sociocultural factors, health care systems' factors, and dementia care needs as they change across time. It provides a template to encourage longitudinal research on reciprocal relationships between caregiver and care recipient because significant changes in the physical and/or mental health status of one member of the dyad will probably affect the physical and/or mental health of the partner. This article offers illustrative research projects employing this framework and concludes with a call to action and invitation to researchers to test components, share feedback, and participate in continued refinement to more quickly advance evidence-based knowledge and practice in the trajectory of dementia caregiving.
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Cuidadores/psicologia , Demência/enfermagem , Projetos de Pesquisa , Humanos , Qualidade de VidaRESUMO
The number of older adults living with functional decline and serious illness is growing exponentially at a time when availability of both family and professional caregivers is strained. Achieving optimal outcomes for this vulnerable population involves advancing the knowledge needed to improve the quality of care delivered by families, health professionals, and community programs. Recent reports from National Institute of Health and the National Academy of Science, Engineering and Medicine have called for the identification of gaps in key areas of family caregiving intervention research. In March 2018, the Family Caregiving Institute at UC Davis convened an invitational meeting of over 50 thought leaders in family caregiving-representing service agencies, funding organizations, and academia-to participate in the Research Priorities in Caregiving Summit: Advancing Family-Centered Care across the Trajectory of Serious Illness. Using an iterative process, attendees identified the top 10 research priorities and created research priority statements that incorporated a definition of the priority topic, rationale for the priority; problem(s) to address; priority population(s); and example research topics. The research priority statements serve as a roadmap for research development that will address the most significant gaps in the caregiving field.
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Cuidadores , Doença Crônica/enfermagem , Idoso , Família , Humanos , Assistência Centrada no Paciente , PesquisaAssuntos
Doença de Alzheimer/enfermagem , Negro ou Afro-Americano/estatística & dados numéricos , Cuidadores/psicologia , Emprego , Conhecimentos, Atitudes e Prática em Saúde , Transtornos da Memória/psicologia , População Branca/estatística & dados numéricos , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: The nursing profession will need one million more nurses by 2024, yet nursing schools are turning away applicants due to insufficient numbers of nursing faculty. Likewise, minority nursing faculty are needed in order to attract diverse nursing students who can then address health care disparities. PURPOSE: The purpose of this paper is to describe the use of a group think tank (GTT) as a mentoring strategy for supporting the recruitment and retention of minority nursing faculty. METHOD: Guided by Kotter's theory of change, this paper describes the application of the GTT approach with 5 African American (AA) faculty, one AA doctoral student and a cross-cultural mentor. FINDINGS: Results are presented based upon the metrics typically used to support career advancement, promotion and/or tenure. DISCUSSION: The GTT is a promising mentoring model that can be used to integrate cross-cultural and peer mentoring into academic communities to support diversity in academia.
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Negro ou Afro-Americano/estatística & dados numéricos , Diversidade Cultural , Docentes de Enfermagem/normas , Guias como Assunto , Grupos Minoritários/estatística & dados numéricos , Seleção de Pessoal/normas , Escolas de Enfermagem/normas , Adulto , Docentes de Enfermagem/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Grupo Associado , Seleção de Pessoal/estatística & dados numéricos , Escolas de Enfermagem/estatística & dados numéricosRESUMO
Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management-A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high. [Journal of Psychosocial Nursing and Mental Health Services, 57(1), 17-24.].
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Cuidadores/psicologia , Demência/enfermagem , Pesar , Processos Grupais , Assistência de Longa Duração , Gravação de Videoteipe/métodos , Adulto , Grupos Focais , Humanos , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
The aim of this study was to develop and trial a screening tool to increase palliative care referrals for hospitalized patients with chronic obstructive pulmonary disease (COPD) at a community hospital. Baseline data were collected retrospectively to determine the palliative care referral rate of patients with COPD at a high risk for readmission using the LACE index. A palliative care referral tool was developed to screen the patients who were at a high risk for readmission for palliative care referral. A 3-month pilot project prospectively evaluated the palliative care referral rate after educating staff on the use of the screening tool and implementing its use. During the baseline study, 2 palliative care referrals were placed out of 19 patients who were deemed appropriate by the screening tool (10.5%). During the pilot project, 16 palliative care referrals were placed out of 45 patients who were deemed appropriate by the screening tool (35.6%). Emergency room visits and readmissions were not significantly different between those with palliative referrals and those without. Barriers to palliative care referral were explored. The improvement in palliative care referrals, which occurred after the introduction of the consensus-driven screening process for patients with COPD, suggests the possibility of improved patient care using this model.