Evaluating the Impact of an Evidence-Based Practice Education Program in a Nurse Residency Program on Evidence-Based Practice Beliefs, Implementation, and Competency.

This quality improvement project examined implementation of the John Hopkins Nursing evidence-based practice (EBP) model, a standardized EBP education curriculum, in a hospital-based nurse residency program. We found that EBP education increased nurse residents' EBP beliefs, implementation frequency, and competencies. Our findings suggest that adopting existing EBP curricula is a convenient and effective approach to EBP education. Staff development professionals should continue to support and advocate for the adoption of EBP education within their organizations.

Evaluation of a care management program on family caregivers of persons with dementia.

As the U.S. population ages, dementia due to Alzheimer's or other disease is concerning for healthcare providers. Family caregivers (FCGs) of persons with dementia (PWDs) may experience negative outcomes. The University of California, Davis, Health (UCDH) Alzheimer's and Dementia Care (ADC) Program provides care management for PWDs and their FCGs. This pilot study evaluates the program's effect on FCG depression, strain, and distress. Despite an increase in dementia severity in PWDs, FCGs experienced decreased levels of depression, strain, and distress following 12 to 18 months in the UCDH ADC Program. Other findings include PWDs experiencing reductions in severity of neuropsychiatric symptoms and remaining at home with FCGs. Despite limitations, such as a relatively small sample size and lack of sample diversity, this pilot study demonstrated positive outcomes to both PWDs and their FCGs and contributes to the literature supporting dementia care management programs. Future projects should address these limitations to understand the experiences of a diverse population and to make dementia care management programs sustainable.

Needs of persons living with ALS at home and their family caregivers: A scoping review.

INTRODUCTION/AIMS: Most persons with amyotrophic lateral sclerosis (ALS) live at home with support of family caregivers, with escalating complexity of care over the trajectory of the disease requiring resources and support to mitigate negative physical, social, and emotional outcomes. METHODS: This scoping review identifies the home health/home care needs of persons with ALS and their caregivers as a basis for creating a home health medical standard. We used the PRISMA Extension for Scoping Reviews (PRISMA-ScR) to examine studies describing home care needs published between 2011 and 2021. RESULTS: Our search yielded 481 articles, of which 44 were included with a total of 3592 (9-273) participants. Most studies used a cross-sectional design and 20 (45%) were rated as high quality. We grouped the needs identified as emotional/psychological, assistive devices and technology, information and education, and human resources and professional services. Most studies demonstrated persistent unmet needs and that available interventions were helpful while needs generally were not met proactively, despite the predictable trajectory. DISCUSSION: This review describes biopsychosocial and equipment interventions over the trajectory of ALS with implications for anticipatory planning by clinicians, as well as policy for coverage of necessary services and supports. Interdisciplinary expert teams could develop consensus around needs across the trajectory and recommended services and supports. To make knowledge more accessible, encourage availability of services, and clarify the need for coverage of services, we aim to develop an expert consensus-based ALS home health medical standard guidance document in collaboration with the American Association of Neuromuscular and Electrodiagnostic Medicine.

Diverse demands and resources among racially/ethnically diverse caregivers.

OBJECTIVES: The family caregiver population in the US is growing in conjunction with greater numbers of older adults with serious illness and complex care needs, and is becoming increasingly diverse. This study described and compared resources, demands, and health outcomes among diverse family caregivers by race/ethnicity. DESIGN: This study was a cross-sectional secondary analysis of nationally representative data collected for Black/African-American, Asian American & Pacific Islander, Latino/Hispanic and non-Latino/Hispanic white caregivers (n = 2,010) in the Home Alone Revisited Study. We described available resources (e.g. income, paid help, social support) and demands (e.g. medical/nursing task performance) by racial/ethnic group. Using survey-weighted logistic regression, we examined relationships of resources and demands with caregiver outcomes (i.e. heath status; strain; depressive symptoms) by race-ethnicity controlling for socio-demographic variables. RESULTS: Distribution of resources and demands was similar by race/ethnicity, except for higher income for non-Latino/Hispanic white caregivers. Nearly half assisted with personal care (47.5%) or medical/nursing tasks (49.7%). Higher social support and satisfaction with social relationships was associated with positive health outcomes regardless of race/ethnicity, while income was consistently associated with positive health outcomes only for non-Latino/Hispanic white caregivers. Medical/nursing task performance was significantly associated with negative health outcomes for Asian American & Pacific Islanders in multivariable models. DISCUSSION: Many caregiving demands and tasks are similar by race/ethnicity and represent considerable investment of time, energy and care. Differences in the effects of resources and demands by race/ethnicity should be explored in future research as they may have implications for assessment and planning of culturally and linguistically appropriate interventions.

Home Oxygen Therapy: Assisting and educating caregivers and those receiving supplemental oxygen.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Using a Mechanical Lift at Home: Preparing family caregivers to use lifts for transfers.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Implementation of a Statewide Web-Based Caregiver Resource Information System (CareNav): Mixed Methods Study.

BACKGROUND: With the aging population, family caregivers provide increasingly complex and intense care for older adults and persons with disabilities. There is growing interest in developing community-based services to support family caregivers. Caregiving occurs around the clock, and caregivers face challenges in accessing community-based services at convenient times owing to the demands of care. Web-based resources hold promise for accessible real-time support. CareNav (TM), a caregiver resource information system, is a web-based platform designed to support real-time universal caregiver assessment, a record of client encounters, development of a care plan, tailored information and resource content, access to web-based caregiver resources, the capacity to track service authorization and contracts, and secure communications. The assessment includes needs and health conditions of both the care recipient and caregiver; current resources; and priorities for support, information, and referral. In 2019, the California Department of Health Care Services funded the 11 nonprofit California Caregiver Resource Centers (CRCs) to expand and improve family caregiver services and enhance CRC information technology services. Deployment of a statewide information system offered a unique opportunity to examine structures and processes facilitating implementation, providing feedback to the sites as well as lessons learned for similar projects in the future. OBJECTIVE: The aim of this paper was to describe the statewide implementation of the comprehensive CareNav system using the Consolidated Framework for Implementation Research as an organizing structure for synthesizing the evaluation. METHODS: This mixed methods study used two major approaches to evaluate the implementation process: a survey of all staff who completed training (n=82) and in-depth qualitative interviews with 11 CRC teams and 3 key informants (n=35). We initially analyzed interview transcripts using qualitative descriptive methods and then identified subthemes and relationships among ideas, mapping the findings to the Consolidated Framework for Implementation Research. RESULTS: We present findings on the outer setting, inner setting, characteristics of the intervention, characteristics of the staff, and the implementation process. The critical elements for success were leadership, communication, harmonization of processes across sites, and motivation to serve clients in more accessible and convenient ways. CONCLUSIONS: These findings have implications for technology deployment in diverse community-based agencies that aspire to enhance web-based services.

Breast Cancer Survivors' Satisfaction and Information Recall of Telehealth Survivorship Care Plan Appointments During the COVID-19 Pandemic.

OBJECTIVES: To examine patient satisfaction and information recall after telehealth breast cancer survivorship visits with a nurse practitioner. SAMPLE & SETTING: Female survivors of breast cancer after their first visit with a nurse practitioner in the outpatient survivorship clinic post-treatment. METHODS & VARIABLES: Participants included female survivors who were originally diagnosed with stage 0-III breast cancer and have since completed an initial telehealth appointment to review the survivorship care plan. Survivors were invited to complete a 20-question electronic survey about their satisfaction and recall of visit information. RESULTS: 62 participants completed the survey and indicated an overall high level of satisfaction with telehealth survivorship appointments. Most recalled key survivorship information from the visit and felt the appropriate amount of information was discussed. Overall satisfaction was significantly correlated with the length and convenience of the appointment, and the personal manner and technical skills of the nurse practitioner. Survivors' age was not associated with significant differences in overall satisfaction. IMPLICATIONS FOR NURSING: Telehealth for initial survivorship visits demonstrated high satisfaction with telehealth and the overall visit as a low-cost intervention to treat symptoms.

Virtual Reality for Symptom Management in Patients Undergoing Hematopoietic Stem Cell Transplantation: A Quality Improvement Initiative.

OBJECTIVES: To evaluate the effects of virtual reality (VR) on symptom distress, such as depression, anxiety, and pain, experienced by individuals receiving allogeneic hematopoietic stem cell transplantation. SAMPLE & SETTING: 20 participants aged 19-70 years (median age of 56.5 years) who were hospitalized in an academic setting received as many as two sessions of VR per week for two weeks. METHODS & VARIABLES: Before and after each session, participants completed the revised Edmonton Symptom Assessment Scale (ESAS-r) to evaluate their symptoms. Paired t tests were later conducted. RESULTS: VR sessions showed significant improvement in 8 of the 10 symptoms addressed in ESAS-r. IMPLICATIONS FOR NURSING: VR can improve symptoms in patients following hematopoietic stem cell transplantation in a hospital setting, provide a low-cost intervention to treat symptoms, and support future investigations exploring how VR affects prolonged hospitalizations related to distressing symptoms.

Trust and shared decision-making among individuals with multiple myeloma: A qualitative study.

BACKGROUND: Multiple myeloma (MM) is an incurable cancer with complex treatment options. Trusting patient-clinician relationships are essential to promote effective shared decision-making that aligns best clinical practices with patient values and preferences. This study sought to shed light on the development of trust between MM patients and clinicians. METHODS: Nineteen individual semi-structured interviews were conducted with MM patients within 2 years of initial diagnosis or relapse for this qualitative study. Interviews were recorded and transcripts were coded thematically. RESULTS: We identified three main themes: (1) externally validated trust describes patients' predisposition to trust or distrust clinicians based on factors outside of patient-clinician interactions; (2) internally validated trust describes how patients develop trust based on interactions with specific clinicians. Internally validated trust is driven primarily by clinician communication practices that demonstrate competence, responsiveness, listening, honesty, and empathy; and (3) trust in relation to shared decision-making describes how patients relate the feeling of trust, or lack thereof, to the process of shared decision-making. CONCLUSION: Many factors contribute to the development of trust between MM patients and clinicians. While some are outside of clinicians' control, others derive from clinician behaviors and interpersonal communication skills. These findings suggest the possibility that trust can be enhanced through communication training or shared decision-making tools that emphasize relational communication. Given the important role trust plays in shared decision-making, clinicians working with MM patients should prioritize establishing positive, trusting relationships.

Stakeholder Voices: Interpreting Caregiving Research and Designing Next Steps.

Stakeholder engagement can enhance interpretation of research findings and promote meaningful dissemination into policy and practice. Several organizations dedicated to understanding the needs of diverse older adults and family caregivers and advancing practice and policy to improve their health came together in a series of discussions. More than 120 participants, including family/friend caregivers and their advocates and leaders and researchers from public and private organizations, generated an action agenda for those engaged with family caregivers in service delivery, research, and policy across three virtual sessions. Although there are common experiences and demands for caregivers, the meanings of these experiences are shaped by a cultural context, and the intersectionality of caregiver experiences by age, race/ethnicity, gender identity, sexual orientation, immigrant status, and other factors bring into focus the diversity of life and caregiving experience. This heterogeneity of experience crystalizes the importance of assuring the caregiver is at the center, and that design for programs, research, and policy recognize the importance of understanding caregivers and their unique needs before pre-supposing solutions. [Journal of Gerontological Nursing, 47(9), 5-12.].

Caregiver Characteristics and Outcomes Associated With Level of Care Complexity for Older Adults.

Care in the home is increasingly complex, with family caregivers now expected to take on aspects of care previously managed by nurses and other health professionals. In a national sample of caregivers of older adults, we examined predictors and outcomes of level of care (low, medium, high) based on caregiving hours and counts of activities of daily living (ADLs) and instrumental ADLs supported. Characteristics associated with high level of care include Hispanic or "other" race/ethnicity, being unemployed, and specific care recipient conditions (e.g., Alzheimer's disease/dementia, cancer, mobility limitations). High compared to low level of care is also associated with caregiving difficulty and unmet needs. These findings underscore the need for targeted interventions and nursing research to further understand the features and dynamics of care complexity. Such research can inform family-centered interventions, health care system redesign, and health policies to support family caregivers of older adults engaged in complex care. [Research in Gerontological Nursing, 14(3), 117-125.].

Diversity of genetic alterations of primary central nervous system lymphoma in Hispanic versus non-Hispanic patients.

PURPOSE: Primary central nervous system lymphoma (PCNSL) is a rare type of non-Hodgkin lymphoma. Previous studies have identified MYD88, CD79b and PIM1 as the most common genetic mutations in PCNSL. The extent to which mutations vary by ethnicity is unknown. The purpose of this study was to describe differences in genetic mutations and survival by Hispanic ethnicity in PCNSL. METHODS: 30 patients with PCNSL were examined for mutations in 275 genes by DNA analysis and 1408 genes by RNA analysis utilizing next generation sequencing. RESULTS: 60% of patients were Hispanic. 125 different mutated genes were detected. The most commonly affected genes were: MYD88 (44%), CARD11 (21%), CD79b (17%), PIM1 (17%) and KMT2D (17%) . MYD88 mutation was less frequent in Hispanic patients (27% vs 66%, P=.02). More Hispanic patients had >3 mutated genes (89% vs 55 %. P=.03). Two-year progression-free survival (PFS) and overall survival (OS) in Hispanic vs. non-Hispanic patients (PFS 60% vs 27%, P=.09), (OS 60% vs 36%, P=.23). MYD88, CARD11, PIM1, and KMT2D were not associated with significant differences in OS or PFS. CD79b mutation correlated with superior 2-yr PFS (P=.04). CONCLUSIONS: We identified highly recurrent genetic alterations in PCNSL. Our data suggest that heterogeneity in some mutations may be related to ethnicity. There was no statistically significant difference in 2-yr PFS and OS in our Hispanic patients. Studies on larger population may further help to describe differences in tumor biology, and outcomes in Hispanic patients.

Using a Mechanical Lift at Home.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Managing Home Infusion Therapy.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Home Oxygen Therapy.

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

Overburdened and Underprepared: Medical/Nursing Task Performance Among Informal Caregivers in the United States.

Informal caregivers are increasingly performing medical/nursing tasks in the home for adult care recipients, often without adequate support. In the current study, using data from the Caregiving in the U.S. 2015 survey (N = 1,248), we examined associations between performing medical/nursing tasks and caregiver well-being (e.g., physical strain, emotional stress, burden of care). Overall, 58% of caregivers performed medical/nursing tasks. Compared to those who did not, those performing tasks had higher risk of emotional stress, physical strain, and high burden of care. Among task performers, difficulty performing tasks was associated with higher risk of all outcomes; having no choice in caregiving was independently associated with higher risk of emotional stress and physical strain. Caregivers performing medical/nursing tasks, particularly those who find tasks difficult, are at risk for adverse outcomes. New clinical approaches are needed to ensure meaningful conversations about caregivers' willingness, availability, and ability to perform medical/nursing tasks and to provide support for this part of the caregiving role. [Journal of Gerontological Nursing, 46(9), 25-35.].

Social Determinants of Health: Underreported Heterogeneity in Systematic Reviews of Caregiver Interventions.

BACKGROUND AND OBJECTIVES: Although most people have some experience as caregivers, the nature and context of care are highly variable. Caregiving, socioeconomic factors, and health are all interrelated. For these reasons, caregiver interventions must consider these factors. This review examines the degree to which caregiver intervention research has reported and considered social determinants of health. RESEARCH DESIGN AND METHODS: We examined published systematic reviews and meta-analyses of interventions for older adults with age-related chronic conditions using the PRISMA and AMSTAR 2 checklists. From 2,707 papers meeting search criteria, we identified 197 potentially relevant systematic reviews, and selected 33 for the final analysis. RESULTS: We found scant information on the inclusion of social determinants; the papers lacked specificity regarding race/ethnicity, gender, sexual identity, socioeconomic status, and geographic location. The majority of studies focused on dementia, with other conditions common in later life vastly underrepresented. DISCUSSION AND IMPLICATIONS: Significant gaps in evidence persist, particularly for interventions targeting diverse conditions and populations. To advance health equity and improve the effectiveness of interventions, research should address caregiver heterogeneity and improve assessment, support, and instruction for diverse populations. Research must identify aspects of heterogeneity that matter in intervention design, while recognizing opportunities for common elements and strategies.

Their Last Breath: Death and Dying in a Hmong American Community.

Hmong Americans have typically been unwilling to use biomedical palliative care for end-of-life needs. This has resulted in confusion and frustration for Hmong patients, families, and nurses. Hmongs' end-of-life care choices for family members usually involve in-home caregiving provided by the family using a combination of biomedicine and traditional healing methods. Health care decisions are made for the patient by the family and community in this familistic culture. A qualitative approach was used to explore the beliefs that ultimately determine end-of-life care goals and strategies for Hmong patients. Semistructured interviews were conducted with 15 family caregivers of terminally ill patients and 5 shamans and Hmong funeral officiants. Several themes affecting care choices were identified, including cultural legacies of the responsibility of end-of-life caregiving by the family, the desire for family privacy in caregiving, and the role of community in the care for the dying, as well as completion of the rituals that ensure the soul of the deceased reaches the afterlife. Suggestions for improving communication between Hmongs and biomedical providers include providing information about end-of-life care beliefs and strategies to biomedical care providers and providing information to Hmong patients and families about hospice and palliative care options and services to support family care.

Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce.

Family caregivers provide the vast majority of care for individuals with serious illness living in the community but are not often viewed as full members of the healthcare team. Family caregivers are increasingly expected to acquire a sophisticated understanding of the care recipient's condition and new skills to execute complex medical or nursing tasks, often without adequate preparation and support, and with little choice in taking on the role. This review draws on peer-reviewed literature, government reports, and other publications to summarize the challenges faced by family caregivers of older adults in the context of serious illness and to identify opportunities to better integrate them into the healthcare workforce. We discuss promising approaches such as inclusion of family caregivers in consensus-based practice guidelines; the "no wrong door" function, directing consumers to needed resources, regardless of where initial contact is made; and caregiver-friendly workplace policies allowing flexible arrangements. We present specific recommendations focusing on research, clinical practice, and policy changes that promote family-centered care and improve outcomes for caregivers as well as persons with serious illness. J Am Geriatr Soc 67:S451-S456, 2019.