Approaches to decision-making among late-stage melanoma patients: a multifactorial investigation.

PURPOSE: The treatment decisions of melanoma patients are poorly understood. Most research on cancer patient decision-making focuses on limited components of specific treatment decisions. This study aimed to holistically characterize late-stage melanoma patients' approaches to treatment decision-making in order to advance understanding of patient influences and supports. METHODS: (1) Exploratory analysis of longitudinal qualitative data to identify themes that characterize patient decision-making. (2) Pattern analysis of decision-making themes using an innovative method for visualizing qualitative data: a hierarchically-clustered heatmap. Participants were 13 advanced melanoma patients at a large academic medical center. RESULTS: Exploratory analysis revealed eight themes. Heatmap analysis indicated two broad types of patient decision-makers. "Reliant outsiders" relied on providers for medical information, demonstrated low involvement in decision-making, showed a low or later-in-care interest in clinical trials, and expressed altruistic motives. "Active insiders" accessed substantial medical information and expertise in their networks, consulted with other doctors, showed early and substantial interest in trials, demonstrated high involvement in decision-making, and employed multiple decision-making strategies. CONCLUSION: We identified and characterized two distinct approaches to decision-making among patients with late-stage melanoma. These differences spanned a wide range of factors (e.g., behaviors, resources, motivations). Enhanced understanding of patients as decision-makers and the factors that shape their decision-making may help providers to better support patient understanding, improve patient-provider communication, and support shared decision-making.

Does Housing Status Matter in Emergency Medical Services Administration of Naloxone? A Prehospital Cross-sectional Study.

Introduction: Persons experiencing homelessness (PEH) use emergency medical services (EMS) at disproportionately high rates relative to housed individuals due to several factors including disparate access to healthcare. Limited access to care is compounded by higher rates of substance use in PEH. Despite growing attention to the opioid epidemic and housing crisis, differences in EMS naloxone administration by housing status has not been systematically examined. Our objective in this study was to describe EMS administration of naloxone by housing status in the City of Los Angeles. Methods: This was a 12-month retrospective, cross-sectional analysis of electronic patient care reports (ePCRs) for all 9-1-1 EMS incidents attended by the Los Angeles Fire Department (LAFD), the sole EMS provider agency for the City of Los Angeles during the study period, January-December 2018. During this time, the City had a population of 3,949,776 with an estimated 31,825 (0.8%) PEH. We included in the study individuals to whom LAFD personnel had administered naloxone. Housing status is a mandatory field on ePCRs. The primary study outcome was the incidence of EMS naloxone administration by housing status. We used descriptive statistics and logistic regression models to examine patterns by key covariates. Results: There were 345,190 EMS incidents during the study period. Naloxone was administered during 2,428 incidents. Of those incidents 608 (25%) involved PEH, and 1,820 (75%) involved housed individuals. Naloxone administration occurred at a rate of 19 per 1,000 PEH, roughly 44 times the rate of housed individuals. A logistic regression model showed that PEH remained 2.38 times more likely to receive naloxone than their housed counterparts, after adjusting for gender, age, and respiratory depression (odds ratio 2.38, 95% confidence interval 2.15-2.64). The most common provider impressions recorded by the EMS responders who administered naloxone were the same for both groups: overdose; altered level of consciousness; and cardiac arrest. Persons experiencing homelessness who received naloxone were more likely to be male (82% vs 67%) and younger (41.4 vs 46.2 years) than housed individuals. Conclusion: In the City of Los Angeles, PEH are more likely to receive EMS-administered naloxone than their housed peers even after adjusting for other factors. Future research is needed to understand outcomes and improve care pathways for patients confronting homelessness and opioid use.

Qualitative Coding in the Computational Era: A Hybrid Approach to Improve Reliability and Reduce Effort for Coding Ethnographic Interviews.

Sociologists have argued that there is value in incorporating computational tools into qualitative research, including using machine learning to code qualitative data. Yet standard computational approaches do not neatly align with traditional qualitative practices. The authors introduce a hybrid human-machine learning approach (HHMLA) that combines a contemporary iterative approach to qualitative coding with advanced word embedding models that allow contextual interpretation beyond what can be reliably accomplished with conventional computational approaches. The results, drawn from an analysis of 87 human-coded ethnographic interview transcripts, demonstrate that HHMLA can code data sets at a fraction of the effort of human-only strategies, saving hundreds of hours labor in even modestly sized qualitative studies, while improving coding reliability. The authors conclude that HHMLA may provide a promising model for coding data sets where human-only coding would be logistically prohibitive but conventional computational approaches would be inadequate given qualitative foci.

Before Consent: Qualitative Analysis of Deliberations of Patients With Advanced Cancer About Early-Phase Clinical Trials.

PURPOSE: Patients with advanced cancer and oncologists deliberate about early-phase (EP) trials as they consider whether to pursue EP trial enrollment. We have limited information about those deliberations and how they may facilitate or impede trial initiation. This study describes these deliberations and their relationship to trial initiation. PATIENTS AND METHODS: We collected longitudinal, ethnographic data on deliberations of patients with advanced cancer at two academic medical centers. We used constant comparative and framework analyses to characterize the deliberative process and its relationship to trial initiation. RESULTS: Of 96 patients with advanced cancer, 26% initiated EP enrollment and 19% joined a trial. Constant comparative analysis revealed two foci of deliberation. Setting the stage focused on patient and physician support for EP trial involvement, including patients' interest in research and oncologists' awareness of trials and assessment of patient fit. Securing a seat focused on eligibility for and entrance to a specific trial and involved trial availability, treatment history, disease progression, and enrollment timing. Patients enrolled in a trial only when both stages could be successfully navigated. CONCLUSION: Ethnographic data revealed two foci of deliberation about EP trial enrollment among patients with advanced cancer. Physician support played a consequential role in both stages, but enrollment also reflected factors beyond the control of any specific individual. Insights from this study, combined with other recent studies of trial enrollment, advance our understanding of the complex process of EP trial accrual and may help identify strategies to improve rates of participation.

Beyond exploratory: a tailored framework for designing and assessing qualitative health research.

The objective of this commentary is to develop a framework for assessing the rigour of qualitative approaches that identifies and distinguishes between the diverse objectives of qualitative health research, guided by a narrative review of the published literature on qualitative guidelines and standards from peer-reviewed journals and national funding organisations that support health services research, patient-centered outcomes research and other applied health research fields. In this framework, we identify and distinguish three objectives of qualitative studies in applied health research: exploratory, descriptive and comparative. For each objective, we propose methodological standards that may be used to assess and improve rigour across all study phases-from design to reporting. Similar to hierarchies of quality of evidence within quantitative studies, we argue that standards for qualitative rigour differ, appropriately, for studies with different objectives and should be evaluated as such. Distinguishing between different objectives of qualitative health research improves the ability to appreciate variation in qualitative studies and to develop appropriate evaluations of the rigour and success of qualitative studies in meeting their stated objectives. Researchers, funders and journal editors should consider how further developing and adopting the framework for assessing qualitative rigour outlined here may advance the rigour and potential impact of this important mode of inquiry.

What is new with old? What old age teaches us about inequality and stratification.

Aging is remarkably unequal. Who survives to grow old in America and the circumstances they face once there reflect durable racial, socioeconomic, and gender inequalities that structure our lives from birth. Yet within the field of social stratification and mainstream sociology proper, examinations of the rapidly growing population of older Americans are often relegated to a "gerontological" periphery. This essay posits that the failure to place aging as a core concern in stratification and inequality is a missed opportunity. We argue for the importance of reintegrating studies on the stratification of aging and explain why such a move is necessary. Specifically, we posit that (a) examining the aging population is necessary for understanding American inequality because aging is an outcome that is ubiquitous yet highly stratified; (b) aging and being seen as "old" in a youth-focused society are stratifying processes in their own right; and (c) later life provides for analytical comparisons that are illustrative of how key mechanisms of inequality structure and stratify. After examining insights provided by a new wave of research on the aging U.S. population, we revisit the implications for understanding inequality and stratification in a graying and unequal America.

BEYOND TEXT: USING ARRAYS TO REPRESENT AND ANALYZE ETHNOGRAPHIC DATA.

Recent methodological debates in sociology have focused on how data and analyses might be made more open and accessible, how the process of theorizing and knowledge production might be made more explicit, and how developing means of visualization can help address these issues. In ethnography, where scholars from various traditions do not necessarily share basic epistemological assumptions about the research enterprise with either their quantitative colleagues or one another, these issues are particularly complex. Nevertheless, ethnographers working within the field of sociology face a set of common pragmatic challenges related to managing, analyzing, and presenting the rich context-dependent data generated during fieldwork. Inspired by both ongoing discussions about how sociological research might be made more transparent, as well as innovations in other data-centered fields, the authors developed an interactive visual approach that provides tools for addressing these shared pragmatic challenges. They label the approach "ethnoarray" analysis. This article introduces this approach and explains how it can help scholars address widely shared logistical and technical complexities, while remaining sensitive to both ethnography's epistemic diversity and its practitioners shared commitment to depth, context, and interpretation. The authors use data from an ethnographic study of serious illness to construct a model of an ethnoarray and explain how such an array might be linked to data repositories to facilitate new forms of analysis, interpretation, and sharing within scholarly and lay communities. They conclude by discussing some potential implications of the ethnoarray and related approaches for the scope, practice, and forms of ethnography.

Perceived discrimination in U.S. healthcare: Charting the effects of key social characteristics within and across racial groups.

This article employs an original empirical analysis to contribute to scientific understandings of the relationship between social characteristics and perceptions of discrimination in healthcare encounters within and across racial categories in the U.S. Our analysis focuses on a diverse sample of 43,020 adults aged 18 to 85 drawn from the California Health Interview Survey (CHIS). We use a series of weighted descriptive statistics and logistic regression models to parse out factors associated with perceived discrimination and chart how they vary by race and ethnicity. Members of racial minorities were more likely to report perceptions of discrimination, and while the effect was somewhat mitigated by introducing patient and health-care system factors into our models, the race effects remained both statistically significant and of substantial magnitude (particularly for African Americans and Native Americans). Poor self-reported health and communication difficulties in the clinical encounter were associated with increased perceptions of discrimination across all groups. Further, among non-whites, increased education was associated with increased perceptions of discrimination net of other factors. These findings suggest efforts to reduce disparities in medical care should continue to focus on expanding the depth and quality of patient-provider interactions for disadvantaged racial groups, while also being attentive to other factors that affect perceived racial discrimination in healthcare encounters within and across racial groups.

Who are the clients?: goal displacement in an adult day care center for elders with dementia.

This ethnographic study of "goal displacement" in an adult day care center explains how and why certain goals come to surpass others in the organizational practices of elder day care settings. Adult day care is often oriented towards providing family caregivers with respite rather than attempting to directly improve the lives of the elders themselves. Although the adult day care center studied (CADC) was ostensibly founded to care for and improve the lives of elders with dementia, the center instead focused on providing respite for family caregivers who depended on the center for relief from care-giving. I show how the goals that CADC could realistically pursue, and the population it ultimately came to serve, were limited by the larger structural setting in which the organization operated. CADC's dependence on a limited pool of external resources of questionable quality converged with the organizational demands of a difficult population in such a way that simply providing a safe and orderly environment strained the organization to the limit. Providing care that aimed to directly improve elders' lives was seen as unreasonable, because this would have required unavailable resources, personnel, and training. In contrast, helping family caregivers by adopting a "respite focus" was seen as reasonable and worthwhile. Thus, family caregivers came to supplant elders as the de facto clients of CADC. The goal of improving elders' lives remained, but only in brochures and ideology, not organizational practice. Still, this goal remained an important part of the organizational discourse of CADC, since widely shared cultural understandings of the type of care elders deserve, constrained the way the organization could present itself.