Research over the last several decades offers clear evidence that mothers experience considerable pressure in carrying out the expectations of contemporary mothering, including expanded responsibilities relating to child and family health (Hays, 1996; Wolf, 2013). While we know that these pressures produce negative impacts, we know less about the strategies and tools mothers use to cope with these anxieties as they try to "do it right" (Villalobos, 2014). At the same time, research suggests that mothering is increasingly digitally-embedded, as mothers look to the internet and social media for information and support (Schoppe-Sullivan et al., 2017). This study thus explores how mothers use Facebook groups to inform health and parenting decisions. Drawing on data generated through a digital ethnography incorporating 18 months of participant observation, discourse analysis, and interviews with 29 mothers across two sets of divergent, specialized sets of Facebook groups (focusing on “evidence-based” and “natural” health and parenting), I advance three key, interconnected arguments. First, I apply theories of boundaries and boundary-work to show how specialized Facebook groups become persuasive ideological spaces for mothers who seek certainty around their healthcare beliefs and decisions. Next, I apply the concept of echo chambers to argue that mothers involved with these specialized Facebook groups engage in siloed health learning that shapes health beliefs, decisions, and even conversations with healthcare providers. Finally, I show how mothers engage in a form of digitally-mediated emotion management by turning Facebook groups that confirm their parenting ideology in order to alleviate anxieties associated with neoliberalism and individualist parenting, and to feel better about their maternal performance. I ultimately conclude that the turn to digital platforms for certainty, reassurance, and good feelings is both a logical expression and a reflection of the latest wave of maternal responsibilization.

<p>This dissertation, broadly, examines how power dynamics manifest during clinical interactions related to vague and gendered medical symptoms, such as pelvic pain. To examine this issue, I approach my research questions through multiple methods including a critical discourse analysis of the medical discourse on pelvic pain, a survey experiment administered to healthcare workers in the US, and a narrative analysis of pelvic pain patient experiences. While the focus of this research is on pelvic pain, the analyses presented here reach far beyond ideas of power dynamics and pelvic pain. Rather, the findings from this research speak to theoretical discussions medical sociologists have been having for decades. Specifically, findings provide new insight on: 1) the limits of evidence-based medicine as a biomedical paradigm, 2) how fundamental causes of health inequality intersect with each other as well as other factors, such as gender, important in predicting health outcomes and 3) how discussions of metamechanisms in fundamental cause theory can inform our understanding of the accumulation of cultural health capital. In providing such insight, this dissertation uses the case of pelvic pain to integrate multiple perspectives and theories in medical sociology to drive the field forward in a way that acknowledges the many ways power is simultaneously constituted in the clinical interaction. From the role of gender, race, and class in power relations, to the ways medical knowledge, discourse, and authority dictate the clinical interaction, this research covers a wide range of sociological theories and concepts. In doing so, this dissertation sheds new light on current understandings of power in the clinical interaction and its relationship to inequitable health outcomes in the US.</p>

Indiana University-Purdue University Indianapolis (IUPUI) / Healthcare data visualization presents challenges due to its non-standard organizational structure and disparate record formats. Epidemiologists and clinicians currently lack the tools to discern patterns in large-scale data that would reveal valuable healthcare information at the granular level of individual patients and populations. Integrating geospatial and temporal healthcare data within a common visual context provides a twofold benefit: it allows clinicians to synthesize large-scale healthcare data to provide a context for local patient care decisions, and it better informs epidemiologists in making public health recommendations. Advanced implementations of the Scalable Vector Graphic (SVG), HyperText Markup Language version 5 (HTML5), and Cascading Style Sheets version 3 (CSS3) specifications in the latest versions of most major Web browsers brought hardware-accelerated graphics to the Web and opened the door for more intricate and interactive visualization techniques than have previously been possible. We developed a series of new geotemporal visualization techniques under a general healthcare data visualization framework in order to provide a real-time dashboard for analysis and exploration of complex healthcare data. This visualization framework, HealthTerrain, is a concept space constructed using text and data mining techniques, extracted concepts, and attributes associated with geographical locations. HealthTerrain's association graph serves two purposes. First, it is a powerful interactive visualization of the relationships among concept terms, allowing users to explore the concept space, discover correlations, and generate novel hypotheses. Second, it functions as a user interface, allowing selection of concept terms for further visual analysis. In addition to the association graph, concept terms can be compared across time and location using several new visualization techniques. A spatial-temporal choropleth map projection embeds rich textures to generate an integrated, two-dimensional visualization. Its key feature is a new offset contour method to visualize multidimensional and time-series data associated with different geographical regions. Additionally, a ring graph reveals patterns at the fine granularity of patient occurrences using a new radial coordinate-based time-series visualization technique.

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Introduction: Quality improvement (QI) encompasses a wide range of healthcare studies and activities with the common goal of improving patient outcomes, healthcare system performance, and professional development. QI is characterized by a diversity of definitions, stakeholders, clinical fields and study designs, which creates challenges for rigorous reporting and evaluation of these studies. Understanding and addressing the methodological issues that arise from conducting QI studies from multiple clinical disciplines is critical for generating good evidence for healthcare improvement to tackle health system challenges. Objectives: This thesis addressed three independent objectives: (i) Determine the quality of reporting of QI studies in neonatology. (ii) Compare different statistical methods that can be used to analyze data from a cluster randomized controlled trial with repeated measures data and examine how the estimate of intervention effects varies between these approaches. (iii) Determine the cost-effectiveness of providing timely surgery or timely rehabilitation for patients with hip fracture. Methods: Objective 1: We conducted a systematic survey of quality improvement studies in neonatology to examine the extent to which these publications adhered to SQUIRE 2.0, the guidelines for reporting studies that sought to improve the quality, safety, and value of healthcare. Using the same set of articles, we examined how various methodological attributes, such as stakeholder engagement, outcome measures, and statistical process controls, are reported in these studies. Objective 2: To compare the differences in the statistical estimates of intervention effects between linear mixed models and Generalized Estimating Equations, for the CP@Clinic Program cluster randomized RCT, which contains routinely collected monthly outcome data aggregated at the cluster level. Objective 3: We constructed a Markov cohort model to estimate the cost-effectiveness of receiving timely surgery within 24 hours of admission to the emergency department, receiving immediate admission to inpatient rehabilitation following acute care discharge, receiving both, or none. Results: Objective 1: In our assessment of reporting quality, we found that adherence to SQUIRE 2.0 guidelines was inadequate and that journals should endorse the SQUIRE 2.0 guideline for improvement publications to alleviate this issue. We found that process measures was the most frequently reported methodological attribute (89%), while stakeholder engagement with leadership (32%) or caregivers (10%) were infrequently reported or conducted. Objective 2: In comparing statistical methods for analyzing a cluster randomized controlled trial with correlated data, we found that it was critical to apply a correction to the variance estimator of generalized estimating equations to produce robust estimates of the intervention effects. Objective 3: In our economic evaluation, both timely surgery alone and the combination of timely surgery and timely rehabilitation yielded cost-effective improvements in the quality-adjusted life-years of patients with hip fracture. However, the combination of receiving timely surgery and timely rehabilitation requires a high willingness-to-pay threshold, above $128,000 per quality-adjusted life-years, to be considered cost-effective. Conclusions: Overall, understanding the state of reporting and the broad spectrum of methods and methodologic issues for evaluating quality improvement initiatives will advance its rigorous research, evaluation, reporting, and contribution towards informed decision-making for tackling pressing healthcare issues. / Thesis / Doctor of Philosophy (PhD) / Quality improvement (QI) is a field of healthcare research that can be defined in many ways, and research in this field is conducted by researchers from various medical disciplines. Consequently, challenges may arise in reporting and evaluating QI interventions. Thus, it is important to examine how QI interventions are reported in academic literature and the methods used to evaluate their effectiveness in improving health. The current thesis aims to address these issues through three independent objectives: (1) examine the details reported in QI studies in neonatology, (2) compare different statistical methods that can be used to analyze data from a community paramedicine cluster randomized controlled trial, and (3) investigate whether providing timely surgery and timely hospital-based rehabilitation is a cost-effective way to improve the quality of life of patients who have experienced hip fracture. The findings of these studies will provide insights into the challenges of reporting and evaluating QI interventions, and suggest ways to improve them.

Hadron Therapy (HT) exploits properties of ion radiation to gain therapeutic advantages over existing photon-based forms of external radiation therapy. However, its relative superiority and cost-effectiveness have not been proven for all clinical situations. Establishing a robust evidence base for the development of best treatment practices is one of the major challenges for the field. This thesis investigates two research infrastructures for building this essential evidence. First, the thesis develops main components of a metadata-driven software architecture for the collection of clinical information and its analysis. This architecture acknowledges the diversity in the domain and supports data interoperability by sharing information models. Their compliance to common metamodels guarantees that primary data and analysis results can be interpreted outside of the immediate production context. This is a fundamental necessity for all aspects of the evidence creation process. A metamodel of data capture forms is developed with unique properties to support data collection and documentation in this architecture. The architecture's potential to support complex analysis processes is demonstrated with the help of a novel metamodel for Markov model based simulations, as used for the synthesis of evidence in health-economic assessments. The application of both metamodels is illustrated on the example of HT. Since the biological effect of particle radiation is a major source of uncertainty in HT, in its second part, this thesis undertakes first investigations towards a new research facility for bio-medical experiments with ion beams. It examines the feasibility of upgrading LEIR, an existing accelerator at the European Organisation for Nuclear Research (CERN), with a new slow extraction and investigates transport of the extracted beam to future experiments. Possible configurations for the slow-resonant extraction process are identified, and designs for horizontal and vertical beam transport lines developed. The results of these studies indicate future research directions towards a new ion beam facility for biomedical research.

A hipertensão arterial sistêmica (HAS) é uma doença crônica altamente prevalente, que pode ser controlada com tratamento farmacológico. Para tal, recomenda-se aplicar as melhores evidências clínicas por meio da utilização de guias de prática clínica (GPC) de alta qualidade. No entanto, o processo de desenvolvimento de GPC requer recursos humanos e tempo, sendo a adaptação uma opção para reduzir a duplicação de esforços e adequar o GPC para uso local. O objetivo deste trabalho foi sintetizar as recomendações de GPC para o tratamento farmacológico da HAS. Aplicou-se o método de adaptação ADAPTE, realizando as duas primeiras fases: Configuração e Adaptação. Na fase de Configuração, o Grupo CHRONIDE realizou o planejamento e registrou a pesquisa no Próspero. Na fase de Adaptação, realizou-se uma revisão sistemática. Os critérios de eligibilidade foram: GPC que continham recomendações para o tratamento farmacológico da HAS em atenção primária, publicados em inglês, português ou espanhol, no período de 01/01/2011 a 31/12/2016. Em 31/11/2017 atualizou-se GPC incluídos. Para a determinação da qualidade destes GPC, três avaliadores, de forma independente, aplicaram o Appraisal of Guidelines for Research & Evaluation II (AGREE II). Dos 37 GPC avaliados, 6 foram considerados de alta qualidade (escore 60% ou mais no domínio Rigor de desenvolvimento do AGREE II). As recomendações destes foram extraídas e incluídas nas matrizes. Os GPC apresentaram divergências em suas recomendações. As divergências mais relevantes foram as recomendações mais rigorosas do GPC de 2017 da American College of Cardiology e American Heart Association (ACC/AHA), que trouxe metas terapêuticas e níveis pressóricos para indicação de farmacoterapia mais baixos que os demais. A maioria dos GPC recomendou o uso de diuréticos tiazídicos como farmacoterapia de primeira linha para tratamento da HAS e contraindicou o uso combinado de inibidores da enzima conversora de angiotensina e bloqueadores dos receptores de angiotensina II. Portanto, em uma discussão para adaptação local de recomendações, um dos pontos principais, além da questão do acesso aos medicamentos, seria adotar ou não os paramêtros mais rigorosos do GPC 2017 ACC/AHA. / Arterial hypertension is a high prevalent chronic disease that can be controlled with pharmacologic treatment. For such, is recommended the use of the high clinical evidences presented in high quality clinical practice guidelines (CPG). However, the guideline development process requires time and capable human resources, which transform the adaptation to an option to reduce a duplication of efforts and to adapt the CPG to local use. The objective of this work was to synthesize the recommendations of CPG for the pharmacological treatment of arterial hypertension. The ADAPTE method was applied, using 2 steps: Configuration and Adaptation. In the Configuration step, the CHRONIDE group carried out the planning and the method was registered in Prospero. In the Adaptation step a systematic review was performed. The eligibility criteria were: CPG containing recommendations for the pharmacological treatment of arterial hypertension in primary care, published in English, Portuguese or Spanish, from 01/01/2011 to 12/31/2016. On 11/31/2017 it was updated the GPC included. To determine the CPG quality, 3 independent reviewers, assessed the CPG using the Appraisal of Guidelines for Research & Evaluation II (AGREE II) tool. Of the 37 evaluated CPG, 6 were considered to being as high quality (score 60% or higher in the domain \" Rigour of Development \"). The recommendations were extracted and included in the matrix of recommendations. The CPG has presentes differences in their recommendations. The most relevant divergences were the further rigorous recommendations described on CPG 2017 of the American College of Cardiology and American Heart Association (ACC/AHA), which brought therapeutic goals and blood pressure levels lower for pharmacotherapy than the others recommendations. The majority of CPG has recommended the use of thiazide diuretics as first-line pharmacotherapy for the treatment of arterial hypertension and has contraindicated the combined use of angiotensin converting enzyme inhibitors and angiotensin II receptor blockers. Therefore, in a discussion for local adaptation of recommendations, one of the main points, apart from the issue of access to medicines, would be to adopt or would not be adopt the futher rigorous parameters of GPC 2017 ACC/AHA.

L’obiettivo di questo lavoro di ricerca è fare luce su alcuni dei motivi alla base di un rapporto tra scienza e media non sempre facile, nel tentativo di definire gli elementi fondamentali per un giornalismo biomedico divulgativo di qualità. In particolare l’analisi è rivolta al passaggio che più di tutti gli altri, nella costruzione della notizia, pone il giornalista e il metodo scientifico uno di fronte all’altro: la “traduzione” dell’articolo scientifico in articolo divulgativo. La valutazione di elementi quali l’approccio dei giornalisti alla significatività statistica e alla rilevanza clinica dei risultati di uno studio, l’utilizzo dei parametri statistici per esprimere gli esiti ha consentito di delineare una mappa dei punti di maggiore criticità del giornalismo biomedico. La “miscommunication” tra il mondo della ricerca e quello dei media può essere superata dall’acquisizione di un metodo che consenta al giornalista di individuare gli studi che hanno le caratteristiche per diventare notizie da divulgare. Questo lavoro è centrato sull’attività del giornalista, ma occorre ricordare come la comunicazione della salute sia un processo che dalla ricerca fino alla divulgazione pubblica delle notizie coinvolge diversi attori, ciascuno con il proprio ruolo e responsabilità ben precise. / The aim of this research is to investigate some of the reasons at the roots of the tension between science and media, trying to define some of the most important elements that could ensure the quality of biomedical lay journalism. In particular the attention is focused on the step that in the construction of the news puts the journalist and the scientific method one in front of the other: the “translation” of the scientific article in lay press article. From the analysis a picture emerges in which often the journalist is lacking an indispensable background knowledge needed to be able to recognize what is statistically significant or clinically relevant. The “miscommunication” theory, that both journalists and scientists consider an obstacle to scientific information, could be overcome by the acquisition of a method for medical journalists to recognize medical researches that can be used and moved into lay press articles. This research focuses on the correct role of journalist in divulging medical information. However, is important to underline the fact that many are the actors that partecipate to health communication and everyone has a specific role and than responsability.