Caregivers' perceptions of nurse-led discharge education interventions: Knowledge needed for adequate care of a technology-dependent infant in the home setting

Thesis advisor: Pamela J. GraceBackground: Advances in clinical care over the past 40 years have saved the lives of many infants who previously would not have survived. However, a substantial proportion of these children need on-going technological support and are cared for at home by family caregivers with or without the assistance of home care services. Existing studies describe the experience of family caregivers of technology-dependent children post-discharge, but there is a gap in knowledge related to caregivers’ perceptions of nurse-led discharge teaching. Purpose: To describe caregivers’ perceptions of nurse-led discharge education designed to prepare them to care for their technology-dependent infant in the home setting and to uncover factors that facilitate or hinder its effectiveness. Method: A qualitative descriptive study design was employed to explore caregivers’ perceptions of nurse-led discharge education efforts. Demographic data was collected prior to conducting a semi-structured interview. Interview data were analyzed in an iterative fashion using qualitative content analysis. Sample Recruitment was via purposive sampling aimed to find caregivers of technology-dependent infants under the age of three. Nine participants completed the study. Results: An overarching theme, caregiver learning and self-advocacy is enhanced by positive nurse/caregiver relationships and team cohesion, especially during anxiety-producing transitions in care, emerged from the data. The overarching theme encompasses five major themes and several major themes. The five main themes are: the nurse/caregiver relationship enhances learning; the complexity of care presents challenges to the learning process; team performance affects caregivers’ level of anxiety/uncertainty; caregivers’ level of expertise improves self-advocacy; and transitions in care settings contribute to caregiver anxiety. Conclusion: Insights that contribute to nursing knowledge of the caregivers’ experience of nurse-led discharge education and their perceptions of factors that help or hinder their learning were gained. Implications for nursing include the importance of caregivers’ involvement in care team discussions, the necessity of basing teaching approaches and materials in knowledge of best practices, and improved care coordination and discharge planning. Further nursing research, that can generalize findings and generate interventions is also needed to improve the care of this population.Thesis (PhD) — Boston College, 2018.Submitted to: Boston College. Connell School of Nursing.Discipline: Nursing

Disagreeable Privacy Policies: Mismatches between Meaning and Users’ Understanding

Privacy policies are verbose, difficult to understand, take too long to read, and may be the least-read items on most websites even as users express growing concerns about information collection practices. For all their faults, though, privacy policies remain the single most important source of information for users to attempt to learn how companies collect, use, and share data. Likewise, these policies form the basis for the self-regulatory notice and choice framework that is designed and promoted as a replacement for regulation. The underlying value and legitimacy of notice and choice depends, however, on the ability of users to understand privacy policies. This paper investigates the differences in interpretation among expert, knowledgeable, and typical users and explores whether those groups can understand the practices described in privacy policies at a level sufficient to support rational decision-making. The paper seeks to fill an important gap in the understanding of privacy policies through primary research on user interpretation and to inform the development of technologies combining natural language processing, machine learning and crowdsourcing for policy interpretation and summarization. For this research, we recruited a group of law and public policy graduate students at Fordham University, Carnegie Mellon University, and the University of Pittsburgh (“knowledgeable users”) and presented these law and policy researchers with a set of privacy policies from companies in the e-commerce and news & entertainment industries. We asked them nine basic questions about the policies’ statements regarding data collection, data use, and retention. We then presented the same set of policies to a group of privacy experts and to a group of non-expert users. The findings show areas of common understanding across all groups for certain data collection and deletion practices, but also demonstrate very important discrepancies in the interpretation of privacy policy language, particularly with respect to data sharing. The discordant interpretations arose both within groups and between the experts and the two other groups. The presence of these significant discrepancies has critical implications. First, the common understandings of some attributes of described data practices mean that semi-automated extraction of meaning from website privacy policies may be able to assist typical users and improve the effectiveness of notice by conveying the true meaning to users. However, the disagreements among experts and disagreement between experts and the other groups reflect that ambiguous wording in typical privacy policies undermines the ability of privacy policies to effectively convey notice of data practices to the general public. The results of this research will, consequently, have significant policy implications for the construction of the notice and choice framework and for the US reliance on this approach. The gap in interpretation indicates that privacy policies may be misleading the general public and that those policies could be considered legally unfair and deceptive. And, where websites are not effectively conveying privacy policies to consumers in a way that a “reasonable person” could, in fact, understand the policies, “notice and choice” fails as a framework. Such a failure has broad international implications since websites extend their reach beyond the United States

Short-Term Medical Costs of a VHA Health Information Exchange: A CHEERS-Compliant Article.

The Virtual Lifetime Electronic Record (VLER) Health program provides the Veterans Health Administration (VHA) a framework whereby VHA providers can access the veterans’ electronic health record information to coordinate healthcare across multiple sites of care. As an early adopter of VLER, the Indianapolis VHA and Regenstrief Institute implemented a regional demonstration program involving bi-directional health information exchange (HIE) between VHA and non-VHA providers.The aim of the study is to determine whether implementation of VLER HIE reduces 1 year VHA medical costs.A cohort evaluation with a concurrent control group compared VHA healthcare costs using propensity score adjustment. A CHEERs compliant checklist was used to conduct the cost evaluation.Patients were enrolled in the VLER program onsite at the Indianapolis VHA in outpatient clinics or through the release-of-information office.VHA cost data (in 2014 dollars) were obtained for both enrolled and nonenrolled (control) patients for 1 year prior to, and 1 year after, the index date of patient enrollment.There were 6104 patients enrolled in VLER and 45,700 patients in the control group. The annual adjusted total cost difference per patient was associated with a higher cost for VLER enrollees $1152 (95$807–1433) (P < 0.01) (in 2014 dollars) than VLER nonenrollees.Short-term evaluation of this demonstration project did not show immediate reductions in healthcare cost as might be expected if HIE decreased redundant medical tests and treatments. Cost reductions from shared health information may be realized with longer time horizons

Race and sex differences in response to endothelin receptor antagonists for pulmonary arterial hypertension

Background Recently studied therapies for pulmonary arterial hypertension (PAH) have improved outcomes among populations of patients, but little is known about which patients are most likely to respond to specific treatments. Differences in endothelin-1 biology between sexes and between whites and blacks may lead to differences in patients' responses to treatment with endothelin receptor antagonists (ERAs). Methods We conducted pooled analyses of deidentified, patient-level data from six randomized placebo-controlled trials of ERAs submitted to the US Food and Drug Administration to elucidate heterogeneity in treatment response. We estimated the interaction between treatment assignment (ERA vs placebo) and sex and between treatment and white or black race in terms of the change in 6-min walk distance from baseline to 12 weeks. Results Trials included 1,130 participants with a mean age of 49 years; 21% were men, 74% were white, and 6% were black. The placebo-adjusted response to ERAs was 29.7 m (95% CI, 3.7-55.7 m) greater in women than in men (P = .03). The placebo-adjusted response was 42.2 m for whites and −1.4 m for blacks, a difference of 43.6 m (95% CI, −3.5-90.7 m) (P = .07). Similar results were found in sensitivity analyses and in secondary analyses using the outcome of absolute distance walked. Conclusions Women with PAH obtain greater responses to ERAs than do men, and whites may experience a greater treatment benefit than do blacks. This heterogeneity in treatment-response may reflect pathophysiologic differences between sexes and races or distinct disease phenotypes

The argument of the broken pane: Suffragette consumerism and newspapers

Within the cut-throat world of newspaper advertising the newspapers of Britain's Women's Social and Political Union (WSPU) Votes for Women and the Suffragette managed to achieve a balance that has often proved to be an impossible challenge for social movement press—namely the maintenance of a highly political stance whilst simultaneously exploiting the market system with advertising and merchandising. When the militant papers advocated window smashing of West End stores in 1912–1913, the companies who were the target still took advertisements. Why? What was the relationship between news values, militant violence and advertising income? ‘Do-it-yourself’ journalism operated within a context of ethical consumerism and promotionally orientated militancy. This resulted in newspaper connections between politics, commerce and a distinct market profile, evident in the customisation of advertising, retailer dialogue with militants and longer-term loyalty—symptomatic of a wider trend towards newspaper commercialism during this period

Diagnosis of childhood tuberculosis and host RNA expression in Africa

Improved diagnostic tests for tuberculosis in children are needed. We hypothesized that transcriptional signatures of host blood could be used to distinguish tuberculosis from other diseases in African children who either were or were not infected with the human immunodeficiency virus (HIV

OSIRIS-REx Precision Orbit Determination

No abstract availabl

OSIRIS-REx Orbit Determination Performance During the Navigation Campaign

The OSIRIS-REx mission Navigation Campaign consists of three sub-phases: Approach,Preliminary Survey, and Orbital A. Approach was designed for initial characterization ofBennu while matching Bennu's heliocentric velocity. Preliminary Survey provided the firstspacecraft-based estimate of Bennu's mass. This phase consisted of five target flybys witha close approach distance of about 7 km. Orbital A was a two-month phase devoted to theNavigation Team learning the close proximity operations dynamics and environment aroundBennu and transitioning from center-finding optical navigation to landmark feature-basednavigation. This paper provides a detailed summary of the orbit determination performancethroughout the Navigation Campaign

The effect of HIV infection and HCV viremia on Inflammatory Mediators and Hepatic Injury-The Women\u27s Interagency HIV Study.

Hepatitis C virus infection induces inflammation and while it is believed that HIV co-infection enhances this response, HIV control may reduce inflammation and liver fibrosis in resolved or viremic HCV infection. Measurement of systemic biomarkers in co-infection could help define the mechanism of inflammation on fibrosis and determine if HIV control reduces liver pathology. A nested case-control study was performed to explore the relationship of systemic biomarkers of inflammation with liver fibrosis in HCV viremic and/or seropositive women with and without HIV infection. Serum cytokines, chemokines, growth factors and cell adhesion molecules were measured in HIV uninfected (HIV-, n = 18), ART-treated HIV-controlled (ARTc, n = 20), uncontrolled on anti-retroviral therapy (ARTuc, n = 21) and elite HIV controllers (Elite, n = 20). All were HCV seroreactive and had either resolved (HCV RNA-; \u3c50IU/mL) or had chronic HCV infection (HCV RNA+). In HCV and HIV groups, aspartate aminotransferase to platelet ratio (APRI) was measured and compared to serum cytokines, chemokines, growth factors and cell adhesion molecules. APRI correlated with sVCAM, sICAM, IL-10, and IP-10 levels and inversely correlated with EGF, IL-17, TGF-α and MMP-9 levels. Collectively, all HCV RNA+ subjects had higher sVCAM, sICAM and IP-10 compared to HCV RNA-. In the ART-treated HCV RNA+ groups, TNF-α, GRO, IP-10, MCP-1 and MDC were higher than HIV-, Elite or both. In ARTuc, FGF-2, MPO, soluble E-selectin, MMP-9, IL-17, GM-CSF and TGF-α are lower than HIV-, Elite or both. Differential expression of soluble markers may reveal mechanisms of pathogenesis or possibly reduction of fibrosis in HCV/HIV co-infection

Climate-Induced Boreal Forest Change: Predictions versus Current Observations

For about three decades, there have been many predictions of the potential ecological response in boreal regions to the currently warmer conditions. In essence, a widespread, naturally occurring experiment has been conducted over time. In this paper, we describe previously modeled predictions of ecological change in boreal Alaska, Canada and Russia, and then we investigate potential evidence of current climate-induced change. For instance, ecological models have suggested that warming will induce the northern and upslope migration of the treeline and an alteration in the current mosaic structure of boreal forests. We present evidence of the migration of keystone ecosystems in the upland and lowland treeline of mountainous regions across southern Siberia. Ecological models have also predicted a moisture-stress-related dieback in white spruce trees in Alaska, and current investigations show that as temperatures increase, white spruce tree growth is declining. Additionally, it was suggested that increases in infestation and wildfire disturbance would be catalysts that precipitate the alteration of the current mosaic forest composition. In Siberia, five of the last seven years have resulted in extreme fire seasons, and extreme fire years have also been more frequent in both Alaska and Canada. In addition, Alaska has experienced extreme and geographically expansive multi-year outbreaks of the spruce beetle, which had been previously limited by the cold, moist environment. We suggest that there is substantial evidence throughout the circumboreal region to conclude that the biosphere within the boreal terrestrial environment has already responded to the transient effects of climate change. Additionally, temperature increases and warming-induced change are progressing faster than had been predicted in some regions, suggesting a potential non-linear rapid response to changes in climate, as opposed to the predicted slow linear response to climate change