Dyspnea and Palliative Care in Advanced Chronic Obstructive Pulmonary Disease: A Rapid Review.

Dyspnea is the most common and activity-limiting symptom for those with chronic obstructive pulmonary disease (COPD). Treatment is complex, palliative care (PC) dyspnea relief interventions are poorly understood, and PC remains underutilized in COPD despite national guidelines and recommendations. The purpose of this rapid review was to explore the concept of dyspnea and role of PC through the lens of providers, caregivers, and patients with COPD. A systematic approach for synthesis was used to identify 13 articles published between January 2018 and October 2023. Team members compared data via visualization and theme clustering to identify key conclusions describing operationalization of dyspnea, management, and PC implications. Dyspnea operationalization was challenging, with inconsistent measurement and terminology. Dyspnea was a significant burden in COPD and contributed to complexity of treatment. Opioids were used most often to treat dyspnea, but provider perspectives and biases can influence treatment decisions and perceptions of opioid therapy by the patient and caregiver. Evidence-based clinical practice guidelines and policies are needed to clarify the use of opioid therapy for dyspnea management to reduce stigmatization and barriers to treatment. Provider education should emphasize a multipronged approach to treatment of dyspnea in COPD with integration of PC early in the care continuum.

Exploring Nursing Strategies to Engage Community in Cardiovascular Care.

PURPOSE OF REVIEW: This review aims to highlight some of the strategies nurses use to engage community members in cardiovascular care. We also elaborate on opportunities for improving community engagement. RECENT FINDINGS: Community engagement occurs across a continuum of progressive levels of community involvement, impact, trust, and flow of communication. Successful community engagement has been shown to improve both patient-centered care and intervention design, implementation, and dissemination. Nurse strategies used for engaging community in cardiovascular care included more examples of outreach, consult, and involvement than collaboration and shared leadership. More attention is needed toward strategies that embrace collaboration and enhance trusting relationships to advance to shared leadership. Nurses must intentionally work in partnership with communities to improve cardiovascular health for all. Furthermore, assessing meaningful community engagement is necessary to achieve the desired outcomes, including optimal cardiovascular health and thriving communities.

Theoretical and contextual considerations for self-management strategies of children and adolescents with chronic diseases: An integrative review.

The primary aim of this integrative review was to critically evaluate and synthesize published, peer-reviewed research to better understand self-management strategies of children and adolescents with chronic diseases. This review was guided by Whittemore and Knafl's methodological framework. The Pediatric Self-management Model provided the theoretical framework for understanding how self-management behaviors operate within the domains of individual, family, community, and healthcare systems. In June 2019, the electronic databases of EBSCOhost, PubMed, and Scopus, along with reference lists of applicable studies, were searched for appropriate publications. The initial searches yielded 920 citations. Of these, 11 studies met inclusion criteria. A key finding was that involving children and adolescents in the design and delivery phases of interventions was most effective in improving self-management when the interventions did not outweigh cognitive ability or maturity level. In addition, incorporating self-efficacy promotion into self-management interventions may lead to greater sense of responsibility and improved health outcomes. In terms of intervention delivery of self-management strategies, the use of technological platforms and devices was revealed as a promising avenue for youth. A final implication was the importance of family members, peers, and healthcare providers in supporting children and adolescents in adopting self-management behaviors.

A scoping review of unmet needs of caregivers of patients with pulmonary fibrosis.

PURPOSE OF REVIEW: Pulmonary fibrosis is an incurable lung disease that leads to significant morbidity. In many patients, pulmonary fibrosis is progressive causing debilitating dyspnea that impairs patients' ability to perform everyday tasks and maintain independence. Informal caregivers provide invaluable support for patients with pulmonary fibrosis; however, support for the caregiver is inadequate. The purpose of this scoping review is to identify unmet needs for caregivers of pulmonary fibrosis patients. RECENT FINDINGS: During the past 18 months, there has been an increase in studies about the impact of pulmonary fibrosis on the caregiver or carer of the patient with pulmonary fibrosis. These carers experience caregiver burden which includes negative psychological and physical effects on caregiver health because of the challenge in caring for someone with pulmonary fibrosis. Caregivers describe the need for help navigating the healthcare system. This includes supportive and informational needs, lack of access to comprehensive patient-centred care, geographically accessible specialty centres and psychological support for both patient and caregiver. SUMMARY: Caregivers of pulmonary fibrosis patients have numerous unmet care needs that include education about the disease, symptom management, financial assistance, access to specialty centres, advanced care planning and psychological support. This resulting caregiver burden can be alleviated with comprehensive support tailored throughout the disease course.

Starting with I: Combating Anti-Blackness in Libraries.

When millions saw footage of George Floyd's murder by police during the COVID-19 pandemic where marginalized groups had higher death rates, increased awareness and action arose because Black people are treated differently in the United States. Many libraries subsequently created statements and committees to commit to reduce inequities in libraries; however, Black bodies are still being harmed. Therefore, this editorial details the Start and End with I concept and provides concrete steps for making change. It is time to center the voices that have been dismissed and ignored for too long. Are you willing to do what it takes?

What Do Neonatal Intensive Care Unit Policies Tell Us About Kangaroo Care implementation? A Realist Review.

BACKGROUND: Kangaroo care (KC) is recommended for infants during their stay in the neonatal intensive care unit (NICU) due to the benefits to infant growth, stabilized vital signs, and parental bonding; however, literature primarily explores the physiologic benefits, barriers, and facilitators to KC practice. Little is known about the context and mechanisms of KC implementation. PURPOSE: This realist review is to explore what NICU policies tell us about practices to implement KC in the NICU. METHODS: Policies were obtained via email, database, and search engines. Criteria were established to review each policy. Data were entered into a database then exported for frequency counts of identified characteristics. RESULTS: Fifty-one policies were reviewed, which revealed inconsistencies in the implementation of KC practices. Inconsistencies include variability in infant postmenstrual ages and weight criteria, infant medical equipment in place during participation, duration and frequency of KC, KC documentation, and ongoing monitoring requirements. IMPLICATIONS FOR PRACTICE: KC implementation varies widely across NICUs, even with similar infant populations. Exclusion of some infants from receiving KC may decrease the potential beneficial outcomes known to result from KC. IMPLICATIONS FOR RESEARCH: More research to understand KC best practice recommendations and implementation in the NICU is needed. Studies are needed to evaluate the duration and frequency of KC, as well as the benefits to infants and families to optimize KC in the NICU setting.

Integration of Telehealth Education into the Health Care Provider Curriculum: A Review.

Introduction: Telehealth is a rapidly expanding health care delivery modality with increasing utility in the health care community. It is imperative that telehealth education is provided during the training of health care providers to ensure the proper usage and application of this health care delivery system. A comprehensive literature review of telehealth education integrated into the curricula of physician, physician assistant, and advanced practiced registered nurse training programs has not been reported to date. Materials and Methods: An electronic literature search was performed using Scopus®, PubMed, and 17 of the 35 databases on the EBSCOHost platform. We included studies where telehealth concepts and components were integrated in the curriculum for primary care students. We extracted information pertinent to understanding the scope and sustainability of the curriculum and tabulated the results. Results: After a full-text screening of 164 articles and critically analyzing 34, eight articles were included in this review. Comparison of these articles showed no consistency in how telehealth was integrated into the various health care curricula. Content delivered usually included basic telehealth information, however, the depth and breadth of content varied significantly based on the interventions. Discussion: For the articles included in this review, there were no formal study designs regarding basic telehealth educational integration or competencies. While authors recommended conducting evaluation and determining the effectiveness of the interventions, they did not provide a clear picture as to how these efforts should be conducted. Conclusions: In addition to developing a standardized telehealth curriculum, national competencies need to be created, which will guide the development of standardized curriculum across health care training programs.

Community-Based Interventions for Stroke Provided by Nurses and Community Health Workers: A Review of the Literature.

BACKGROUND: Community-based interventions are vital for facilitating poststroke recovery, increasing community participation, and raising awareness about stroke survivors. To optimize recovery and community reintegration, there is a need to understand research findings on community-based interventions that focus on stroke survivors and their caregivers. Although nurses and community health workers (CHWs) are commonly involved in community-based interventions, less is known about their roles relative to other poststroke rehabilitation professionals (physical therapists, occupational therapists, and speech-language pathologists). Thus, the purpose of this review is to explore research focused on improving community-based stroke recovery for adult stroke survivors, caregivers, or both when delivered by nurses or CHWs. METHODS: A systematic review using Scopus, PubMed, EBSCOhost, MEDLINE, CINAHL Complete, and PsycInfo was completed to identify community-based poststroke intervention studies using nurses or CHWs through August 2018. RESULTS: Eighteen studies meeting inclusion criteria from 9 countries were identified. Details regarding nurses' and CHWs' roles were limited or not discussed. Interventions emphasized stroke survivor self-care and caregiver support and were offered face-to-face and in group sessions in the community and home. A wide range of instruments were used to measure outcomes. The results of the interventions provided were mixed. Improvements were observed in perceptions of health, quality of life, knowledge, self-efficacy, self-management, and caregiver support. CONCLUSION: Nurses and CHWs play a pivotal role in community-based care. Evidence suggests community-based interventions facilitate the necessary support for stroke survivors, caregivers, families, and communities to optimize stroke recovery. Data from this review illustrate a continued need for comprehensive programs designed to address the complex needs of stroke survivors and families when they return to their homes and communities.

Announcing the Journal of the Medical Library Association's data sharing policy.

As librarians are generally advocates of open access and data sharing, it is a bit surprising that peer-reviewed journals in the field of librarianship have been slow to adopt data sharing policies. Starting October 1, 2019, the Journal of the Medical Library Association (JMLA) is taking a step forward and implementing a firm data sharing policy to increase the rigor and reproducibility of published research, enable data reuse, and promote open science. This editorial explains the data sharing policy, describes how compliance with the policy will fit into the journal's workflow, and provides further guidance for preparing for data sharing.

Systematic Review of Mammography Screening Educational Interventions for Hispanic Women in the United States.

In the United States (U.S.), Hispanics experience breast cancer disparities. Breast cancer is the leading cause of cancer-related death among Hispanic women, and Hispanic women receive mammography screening at lower rates than some other ethnic groups. This low rate of screening mammography is associated with increased risk for possible late-stage diagnosis and lower survival rates. Educational interventions could play a role in increasing screening mammography rates among Hispanic women. This systematic review synthesized the current literature on educational interventions to increase mammography screening among Hispanic women. The review included studies published between May 2003 and September 2017 with experimental and quasi-experimental interventions to increase mammography screening among Hispanics in the U.S. Five studies out of an initial 269 studies met inclusion criteria for the review. All studies employed an interpersonal intervention strategy with community health workers, or promotoras, to deliver the mammography screening intervention. For each study, odds ratios (OR) were calculated to estimate intervention effectiveness based on similar follow-up time periods. The study ORs resulted in a narrow range between 1.02 and 2.18, indicating a low to moderate intervention effect for these types of interpersonal cancer education interventions. The summary OR for the random effects model was 1.67 (CI 1.24-2.26). Hispanics exhibit lower levels of adherence to screening mammography than non-Hispanic whites. Interpersonal cancer education interventions such as the use of promotoras may help to mediate the impact of barriers to receiving a mammogram such as low health literacy, deficits in knowledge about the benefits of screening, and low awareness of the availability of screening services.

Racial and ethnic disparities in stroke outcomes: a scoping review of post-stroke disability assessment tools.

Purpose: To identify how post-stroke disability outcomes are assessed in studies that examine racial/ethnic disparities and to map the identified assessment content to the International Classification of Functioning, Disability, and Health (ICF) across the time course of stroke recovery. Methods: We conducted a scoping review of the literature. Articles published between January 2001 and July 2017 were identified through Scopus, PubMed, CINAHL, and PsycINFO according to predefined inclusion and exclusion criteria. Results: We identified 1791 articles through database and hand-searching strategies. Of the articles, 194 met inclusion criteria for full-text review, and 41 met inclusion criteria for study inclusion. The included studies used a variety of outcome measures encompassing domains within the ICF: body functions, activities, participation, and contextual factors across the time course of stroke recovery. We discovered disproportionate representation among racial/ethnic groups in the post-stroke disability disparities literature. Conclusions: A wide variety of assessments are used to examine disparities in post-stroke disability across the time course of stroke recovery. Several studies have identified disparities through a variety of assessments; however, substantial problems abound from the assessments used including inconsistent use of assessments, lacking evidence on the validity of assessments among racial/ethnic groups, and inadequate representation among all racial/ethnic populations comprising the US. Implications for Rehabilitation An enhanced understanding of racial/ethnic disparities in post-stroke disability outcomes is inherently important among rehabilitation practitioners who frequently engage with racial/ethnic minority populations across the time course of stroke recovery. Clinicians should carefully consider the psychometric properties of assessment tools to counter potential racial bias. Clinicians should be aware that many assessments used in stroke rehabilitation lack cultural sensitivity and could result in inaccurate assessment findings.

Racial Disparities in Arterial Stiffness Between Healthy Whites and African Americans in the United States: A Meta-analysis.

BACKGROUND: African Americans (AAs) present with cardiovascular disease (CVD) risk factors at younger ages than whites. Consequently, CVD and stroke occur at a higher incidence and at earlier decades in life in AA populations. Arterial stiffness is a predictor of CVD outcomes and partially explains the CVD risk experienced by racial minorities. We evaluated the differences in arterial stiffness observed in AAs and whites through a systematic review and meta-analysis. METHODS: We searched PubMed and SCOPUS for comparative studies published March 1995 to November 29, 2017 comparing arterial stiffness assessments (pulse wave velocity, augmentation index, and central blood pressure) between AAs and whites. Two independent reviewers examined 195 titles/abstracts, 85 full text articles and 11 articles were included in the meta-analysis using random effects modeling approaches. MAIN RESULTS: A total of 5060 white and 3225 AAs were included across 11 relevant studies. Carotid-femoral pulse wave velocity (cfPWV) measures were statistically different between AAs and whites (mean difference = -0.44, 95% confidence interval [CI]: -[-0.67, -0.21], p = 0.0002). Aortic femoral pulse wave velocity was significantly different between AAs and whites (mean difference = -0.21, [95% CI] -0.35, -0.07, p = 0.003) regardless of sex. Augmentation index (AIx) and Augmentation index at a 75 beats per minutes heart rate (AIx @75) was also significantly different between AA and whites (mean difference = -4.36 [95% CI] = -6.59, -2,12, p = 0.0001 and -6.26, [95% CI] = -9.19, -3.33, p < 0.0001, respectively). CONCLUSIONS: Racial disparities in arterial stiffness persist among African American racial groups in the United States. The lack of homogeneity in studies capturing racial disparities in cfPWV suggest that additional studies are needed to understand the magnitude of racial differences in African Americans and whites that might be clinically relevant.

Practicing what we preach: developing a data sharing policy for the Journal of the Medical Library Association.

Providing access to the data underlying research results in published literature allows others to reproduce those results or analyze the data in new ways. Health sciences librarians and information professionals have long been advocates of data sharing. It is time for us to practice what we preach and share the data associated with our published research. This editorial describes the activity of a working group charged with developing a research data sharing policy for the Journal of the Medical Library Association.

I too, am America: a review of research on systemic lupus erythematosus in African-Americans.

Systemic lupus erythematosus (SLE) is a multi-organ autoimmune disorder that can cause significant morbidity and mortality. A large body of evidence has shown that African-Americans experience the disease more severely than other racial-ethnic groups. Relevant literature for the years 2000 to August 2015 were obtained from systematic searches of PubMed, Scopus, and the EBSCOHost platform that includes MEDLINE, CINAHL, etc. to evaluate research focused on SLE in African-Americans. Thirty-six of the 1502 articles were classified according to their level of evidence. The systematic review of the literature reported a wide range of adverse outcomes in African-American SLE patients and risk factors observed in other mono and multi-ethnic investigations. Studies limited to African-Americans with SLE identified novel methods for more precise ascertainment of risk and observed novel findings that hadn't been previously reported in African-Americans with SLE. Both environmental and genetic studies included in this review have highlighted unique African-American populations in an attempt to isolate risk attributable to African ancestry and observed increased genetic influence on overall disease in this cohort. The review also revealed emerging research in areas of quality of life, race-tailored interventions, and self-management. This review reemphasizes the importance of additional studies to better elucidate the natural history of SLE in African-Americans and optimize therapeutic strategies for those who are identified as being at high risk.

Access to Diabetes Care for Populations Experiencing Homelessness: an Integrated Review.

Populations experiencing homelessness with diabetes may encounter barriers to accessing comprehensive diabetes care to manage the condition, yet it is unclear to what extent this population is able to access care. We reviewed the literature to identify and describe the barriers and facilitators to accessing diabetes care and managing diabetes for homeless populations using the Equity of Access to Medical Care Framework. An integrated review of the literature was conducted and yielded 10 articles that met inclusion criteria. Integrated reviews search, summarize, and critique the state of the research evidence. Findings were organized using the dimensions of a comprehensive conceptual framework, the Equity of Access to Medical Care Framework, to identify barriers and facilitators to accessing care and managing diabetes. Barriers included competing priorities, limited access to healthy food, and inadequate healthcare resources. Facilitators to care included integrated delivery systems that provided both social and health-related services, and increased patient knowledge. Recommendations are provided for healthcare providers and public health practitioners to optimize diabetes outcomes for this population.