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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.

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.

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?

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.

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.

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.

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.

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.

BACKGROUND: 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. METHODS: 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. RESULTS: 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). CONCLUSION: 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.

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.

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.

Background and Purpose: Several studies suggest that racial/ethnic minority groups experience worse disability across the course of stroke recovery. However, there is little consistency in the measurement of stroke outcomes, which may contribute to some inconclusive evidence of racial/ethnic disparities in post-stroke disability. The objective of the current review is to examine how stroke outcomes are measured to identify racial/ethnic disparities in disability and functioning among stroke survivors in the US. Methods: A review of the literature was conducted to identify outcome measures used in racial/ethnic disparities in post-stroke disability literature, use the International Classification of Functioning, Disability, and Health (ICF) model as a frame of reference for mapping the contents of the identified measures, and evaluate the time points of measured outcomes and racial/ethnic representation. Articles published between January 2001 and July 2017 were identified with our search criteria through Scopus, PubMed, CINAHL, and PsycINFO according to predefined inclusion criteria. Results: One hundred and ninety-four articles met inclusion criteria for full-text review and 41 articles were included in the final review. Although we found evidence of outcome measure content aligning with all ICF domains, little research has examined contextual factors in post-stroke disability disparities research. Additionally, we discovered the outcome measures are conducted across stroke recovery trajectories including pre-stroke, acute stroke, early recovery (≤90 days), and long-term (>90 days) but little consistency in outcome measure use was discovered. African American and Hispanic populations were assessed most frequently and minimal studies examined disparities among other minority populations comprising the US (i.e., Asian, Native Hawaiian or Other Pacific Islander, American Indian or Alaska Native). Conclusions: A variety of outcome measures have been used to assess disparities in disability across the course of stroke recovery. Yet, the lack of consistency in what outcomes are measured and when specific outcomes are assessed may contribute to mixed findings in the racial/ethnic disparities literature. Additional concerns include the lack of evidence on validity of outcome measures among racial/ethnic minority populations, the lack of representation among all racial/ethnic populations comprising the US, and minimal emphasis placed on the disparities in personal and environmental factors that contribute to disability. This review sheds light on the need for additional disparities in post-stroke disability research focusing on contextual factors and greater representation among less studied populations in the US.

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.

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.

Young adults with sickle cell disease (SCD) are 3 times more likely to die than their pediatric population. Transition into adulthood, limited access to specialist care, low socio-economic status, and a lack of training of family physicians (FPs), may contribute to complications leading to mortality. When compared to other chronic diseases, fewer specialized clinics and outdated evidence based guidelines exist for adults with SCD. This results in discontinuity in care, increased burden on FPs and poor clinical support. The dependence on primary care and the paucity of up-to-date evidence based management creates a situation where as-needed care is provided, but at a cost to disease management and quality of life. This study was designed to explore challenges faced by FPs in the care of patients with SCD. The survey was conducted at two family medicine residency programs: Morehouse School of Medicine (MSM, online) Atlanta and the Georgia Regents University (GRU, paper survey) Augusta, Georgia (2011-2012). Data collected included demographics, comfort with managing patients with SCD and challenges of caring for SCD patients using a 5-point Likert scale survey. Of 120 FP faculty, 75 (62%) responded. Demographics and background are listed in Table. In multivariate modeling, responds that reported seeing >=1 patients with SCD per month were more likely to report challenges (p=0.0014), and were more likely to answer correctly to 75% questions in a quiz (p=0.0131). Those that responded that pain was a challenge, were more likely to see >=1 patient per month with SCD, and reported overcoming challenges with specialist consultation (p=0.0089). Those that reported feeling mostly or completely comfortable treating patients with SCD were more likely to be male (p=0.0035), reported taking care of some patient with SCD (0.0029), residents (0.0198) and not aged 30-49 (p=0.0072). Given the current push for primary care, the role of FPs in providing continuity of care to patients with SCD, a chronic illness cannot be overemphasized. Like in previous recent studies, we report that pain management in patients with SCD was the greatest challenge reported by FPs. Sense of challenge and competency increased with exposure to patients with SCD. Perception of comfort was related to general exposure to patients with SCD, but was also influenced by other factors, including gender. To improve the competence and reduce the challenges faced by FPs in the management of SCD patients, we recommend: 1) development of primary care focused SCD guidelines, with an emphasis on transition of care. 2) Incorporation of SCD care and pain management into family medicine residency curriculum and Continuing Medical Education (CME) activities. | | n | % | | ------------------------------------------------------ | -- | -- | | Female | 41 | 55 | | Age 18-29 years | 10 | 13 | | Age 30-49 years | 42 | 56 | | Age 50-69 years | 23 | 31 | | MD/DO | 70 | 93 | | Other | 5 | 7 | | Faculty | 44 | 59 | | Resident | 31 | 41 | | Training in SCD, residency | 42 | 56 | | Training in SCD, peer review journals | 36 | 48 | | Reported taking care of patients with SCD | 51 | 68 | | >= 1 patient with SCD per month | 16 | 21 | | Mostly/completely comfortable treating SCD | 17 | 23 | | Reported challenges in care of patients with SCD, any | 32 | 43 | | Reported challenges in care of patients with SCD, pain | 22 | 29 | Table. Disclosures No relevant conflicts of interest to declare.