The influence of civic associations and exposure to ideological heterogeneity on public views on mask wearing and social distancing.

Mask wearing and social distancing have been essential public health guidelines throughout the COVID-19 pandemic, but faced resistance from skeptical subgroups in the United States, including Republicans and evangelicals. We examined the effects of participation in ideologically heterogeneous civic associations on attitudes toward public health measures during the COVID-19 pandemic, particularly among partisan and religious subgroups most resistant to public health guidelines. We analyzed panel survey data from a nationally representative cohort of 1222 U.S. adults collected in April, July, and November 2020, and July/August 2021. Data on the importance of social distancing and mask wearing were collected in November 2020. Evangelicals and Republicans who participated in ideologically diverse civic associations were more likely to support mask wearing compared to those participating in ideologically homogenous associations (difference in predicted policy support on a 0-1 scale: 0.084, p ≤ .05 and 0.020, p ≤ .05, respectively). Evangelicals in ideologically diverse associations were also more likely to support social distancing compared to those in ideologically homogenous associations (0.089, p ≤ .05). Participation in civic associations with ideologically heterogeneous members was associated with greater support for public health measures among skeptical subgroups. Encouraging exposure to diverse ideologies may bolster support for public health measures to mitigate COVID-19.

Public support for U.S. social safety net policies throughout the COVID-19 pandemic.

COVID-19 has stretched the U.S. social safety net and prompted federal legislation designed to ameliorate the pandemic's health and economic impacts. We surveyed a nationally representative cohort of 1222 U.S. adults in April 2020 and November 2020 to evaluate changes in public opinion about 11 social safety net policies and the role of government over the course of the pandemic. A majority of U.S. adults supported six policies at both time points, including policies guaranteeing two weeks of paid sick leave; enacting universal health insurance; increasing the federal minimum wage; and increasing government spending on construction projects, business tax credits, and employment education and training. From April to November 2020, public support was stable for nine of the 11 policies but declined nearly 10 percentage points for policies guaranteeing two weeks paid sick leave (from 76% support in April 2020 to 67% support in November 2020) and extending unemployment insurance benefits (51% to 42%). Declines in support for these two policies were concentrated among those with higher incomes, more education, in better health status, the employed, and those with health insurance. The share of respondents believing in a strong role of government also declined from 33% in April to 26% in November 2020 (p > 0.05). Despite these shifts, we observed consistent majority support for several policies enacted during the pandemic, including guaranteeing paid sick leave and business tax credits, as well as employment-related policies.

Civic engagement and psychological distress during the COVID-19 pandemic.

BACKGROUND: To examine the relationship between civic association participation and psychological distress during the COVID-19 pandemic, particularly whether different forms of engagement mitigate the increased rates of psychological distress throughout 2020. METHODS: Panel survey data collected from a nationally representative cohort of 1222 U.S. adults. Data was collected in three waves in April, July, and November 2020. Psychological distress was measured using the validated Kessler-6 instrument in November 2020. RESULTS: Respondents belonging to political associations were more likely to experience psychological distress (difference in predicted level of psychological distress on a 0-1 scale: 0.098, p ≤ .05) relative to those in unknown associations. However, individuals in political associations who more frequently interacted with others had lower levels of psychological distress (-.065, p ≤ .05) compared to those in political associations with less frequent interactions. CONCLUSIONS: Civic engagement that facilitates interpersonal interactions may protect against psychological distress.

Climate of Respect Evaluation in ICUs: Development of an Instrument (ICU-CORE).

OBJECTIVES: To develop a valid, reliable measure that reflected the environment of respectfulness within the ICU setting. DESIGN: We developed a preliminary survey instrument based on conceptual domains of respect identified through prior qualitative analyses of ICU patient, family member, and clinician perspectives. The initial instrument consisted of 21 items. After five cognitive interviews and 16 pilot surveys, we revised the instrument to include 23 items. We used standard psychometric methods to analyze the instrument. SETTINGS: Eight ICUs serving adult patients affiliated with a large university health system. SUBJECTS: ICU clinicians. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Based on 249 responses, we identified three factors and created subscales: General Respect, Respectful Behaviors, and Disrespectful Behaviors. The General Respect subscale had seven items (α = 0.932) and reflected how often patients in the ICU are treated with respect, in a dignified manner, as an individual, equally to all other patients, on the "same level" as the ICU team, as a person, and as you yourself would want to be treated. The Respectful Behaviors subscale had 10 items (α = 0.926) and reflected how often the ICU team responds to patient and/or family anxiety, makes an effort to get to know the patient and family as people, listens carefully, explains things thoroughly, gives the opportunity to provide input into care, protects patient modesty, greets when entering room, and talks to sedated patients. The subscale measuring disrespect has four items (α = 0.702) and reflects how often the ICU team dismisses family concerns, talks down to patients and families, speaks disrespectfully behind their backs, and gets frustrated with patients and families. CONCLUSIONS: We created a reliable set of scales to measure the climate of respectfulness in intensive care settings. These measures can be used for ongoing quality improvement that aim to enhance the experience of ICU patients and their families.

A Direct Observation Checklist to Measure Respect and Dignity in the ICU.

OBJECTIVE: Treating patients and family members with respect and dignity is a core objective of health care, yet it is unclear how best to measure this in the ICU setting. Accordingly, we sought to create a direct observation checklist to assess the "respect and dignity status" of an ICU. DESIGN: A draft checklist based on previous work was iteratively revised to enhance accuracy and feasibility. SETTING: Seven ICUs within the Johns Hopkins Health System. SUBJECTS: A total of 351 patient-clinician encounters with 184 different patients. INTERVENTIONS: Four study team members pilot tested the checklist between January and August 2015. MEASUREMENTS AND MAIN RESULTS: Standard psychometric analyses were performed. The direct observation checklist exhibits strong content and face validity as well as high reliability and internal consistency. All items load on one factor that supports the unidimensionality of the total index. Furthermore, concurrent validity of the direct observation checklist is demonstrated by statistically significant differences in mean scores between ICUs, between types of clinicians, and between patients' clinical status and mood. CONCLUSIONS: We rigorously developed, pilot tested, and analyzed a direct observation checklist designed to assess the extent to which patients and families in the ICU setting are treated with respect and dignity. Future research should validate this checklist in other settings and compare its results with other measures. Data gathered about individual items on the direct observation checklist could be used to target areas for training and education; doing so should help facilitate more respectful treatment of patients and their families.

Comparison of Approaches for Notification and Authorization in Pragmatic Clinical Research Evaluating Commonly Used Medical Practices.

BACKGROUND: For pragmatic clinical research comparing commonly used treatments, questions exist about if and how to notify participants about it and secure their authorization for participation. OBJECTIVE: To determine how patients react when they seek clinical care and encounter one of several different pragmatic clinical research studies. RESEARCH DESIGN: In an online survey using a between-subjects experimental design, respondents read and responded to 1 of 24 hypothetical research scenarios reflecting different types of studies and approaches to notification and authorization (eg, general notification, oral consent, written consent). SUBJECTS: English-speaking US adults 18 years and older. MEASURES: Willingness to participate in the hypothetical study, acceptability of the notification and authorization approach, understanding of the study, perceptions of benefit/harm, trust, and perception of amount of study information received. RESULTS: Willingness to participate did not differ by notification and authorization approach. Some (21%-36%) of the patients randomized to general notification with an explicit opt-out provision were not aware they would be enrolled by default. Acceptability was greatest for and similar among notification and authorization approaches that actively engaged the patient (eg, oral or written consent) and lower for approaches with less engagement (eg, general notification). Problems of understanding were found among 20%-55% of respondents, depending on the particular scenario. Most respondents (77%-94%) felt that participation in the hypothetical study posed no risks of harm to their health or privacy. CONCLUSIONS: Current attitudes about notification and authorization approaches and difficulties understanding pragmatic clinical research pose significant challenges for pragmatic research. Data from this study provide a starting point to developing solutions to these surprisingly complex issues.

"It's not broke, so let's not try to fix it": why patients decline a cardiovascular implantable electronic device.

BACKGROUND: Few patients decline therapy of a cardiovascular implantable electronic device (CIED), and little is known about the characteristics or reasoning of those who do. Our objective was to describe the reasons why patients decline CIED implantation using qualitative methods. METHODS: Qualitative, engaging thematic analysis. Three patient focus groups led by two trained facilitators and one semi-structured interview guide. RESULTS: Of the 13 patients, two were women and all were white (median age [range], 65 [44-88] years). Five themes emerged: (1) don't mess with a good thing; (2) my health is good enough; (3) independent decision making; (4) it's your job, but it's my choice; and (5) gaps in learning. Most patients who decline CIEDs are asymptomatic. Other reasons to decline included feeling well, enjoying life, acceptance of the future, desire to try to improve health through diet and exercise, hearing of negative CIED experiences, and unwillingness to take on associated risks of CIED implantation. A medical record review showed that clinicians understand patients' reasons for declining CIED treatment. However, focus group data suggest that gaps in patients' knowledge around the purpose and function of CIEDs exist and patients may benefit from targeted education. CONCLUSIONS: Patients decline implantation of CIEDs for various reasons. Most patients who decline therapy are asymptomatic at the time of their device consult. Focus group information show data suggestive that device consultations should be enhanced to address gaps in patient learning and confirm knowledge transfer. Clinicians should revisit treatment options iteratively.

Duty to speak up in the health care setting a professionalism and ethics analysis.

Staff and students working in health care settings are sometimes reluctant to speak up when they perceive patients to be at risk for harm. In this article, we describe four incidents that occurred at our institution (Mayo Clinic). In two of them, health care professionals failed to speak up, which resulted in harm; in the other two, they did speak up, which prevented harm and improved patient care. We analyzed each scenario using the Physician's Charter on Medical Professionalism and prima facie ethics principles to determine whether principles were violated or upheld. We conclude that anyone who works in a health care setting has a duty to speak up when a patient faces harm. We also provide guidance for health care institutions on promoting a culture in which speaking up is encouraged and integrated into routine practice.

Predictors of Public Support for Social Safety Net Policy During the COVID-19 Pandemic.

INTRODUCTION: U.S. residents had varying experiences of the COVID-19 pandemic and social safety net policy in 2020. Past research has suggested that partisanship, ideology, racial attitudes, and personal experience may each influence policy attitudes. In this study, we explore whether variation in support for social safety net policy in 2020 is predicted by negative experiences of the pandemic when controlling for racial attitudes, partisanship, and ideology. METHODS: Support for 12 social safety net policies in 2020 was estimated using data from a nationally representative panel survey of U.S. adults conducted in 2020 (n=1,222). Logistic regression was used to examine differences in the predicted probability of supporting a majority of social safety net policies related to health, housing, and employment by partisanship, ideology, racial attitudes, and negative experiences of the pandemic. Analyses were conducted in 2021. RESULTS: Higher levels of symbolic racism was a consistently strong predictor of lower social safety net policy support across health, housing, and employment policies; as was identifying as either Conservative or Republican. Negative experiences of the pandemic were generally unpredictive of support for the social safety net policy. CONCLUSIONS: Despite the pandemic's consequences as well as the potential for social safety net policy to address these consequences, negative experiences of the pandemic failed to predict policy support, even as racial attitudes, partisanship, and ideology strongly predicted these preferences in 2020. Building public support for social safety net policy requires communication strategies that identify the shared benefits of these policies.

US Adults' Beliefs About Harassing or Threatening Public Health Officials During the COVID-19 Pandemic.

Importance: The rise in attacks on public health officials has weakened the public health workforce and complicated COVID-19 mitigation efforts. Objective: To examine the share of US adults who believed harassing or threatening public health officials because of COVID-19 business closures was justified and the factors shaping those beliefs. Design, Setting, and Participants: The Johns Hopkins University COVID-19 Civic Life and Public Health Survey was fielded from November 11 to 30, 2020, and July 26 to August 29, 2021. A nationally representative cohort of 1086 US adults was included. Main Outcomes and Measures: Respondents were asked how much they believed that threatening or harassing public health officials for business closures to slow COVID-19 transmission was justified. Adjusted differences in beliefs regarding attacks on public health officials were examined by respondent sociodemographic and political characteristics and by trust in science. Results: Of 1086 respondents who completed both survey waves, 565 (52%) were women, and the mean (SE) age was 49 (0.77) years. Overall, 177 respondents (16%) were Hispanic, 125 (11%) were non-Hispanic Black, 695 (64%) were non-Hispanic White, and 90 (8%) were non-Hispanic and another race. From November 2020 to July and August 2021, the share of adults who believed harassing or threatening public health officials because of business closures was justified rose from 20% (n = 218) to 25% (n = 276) (P = .046) and 15% (n = 163) to 21% (n = 232) (P = .01), respectively. In multivariable regression analysis, respondents who trusted science not much or not at all were more likely to view threatening public health officials as justified compared with who trusted science a lot (November 2020: 35% [95% CI, 21%-49%] vs 7% [95% CI, 4%-9%]; P < .001; July and August 2021: 47% [95% CI, 33%-61%] vs 15% [95% CI, 11%-19%]; P < .001). There were increases in negative views toward public health officials between November 2020 and July and August 2021, among those earning $75 000 or more annually (threatening justified: 7 [95% CI, 1-14] percentage points; P = .03), those with some college education (threatening justified: 6 [95% CI, 2-11] percentage points; P = .003), those identifying as politically independent (harassing justified: 9 [95% CI, 3-14] percentage points; P = .01), and those trusting science a lot (threatening justified: 8 [95% CI, 4-13] percentage points; P < .001). Conclusions and Relevance: While antagonism toward public health officials was concentrated among those doubting science and groups most negatively affected by the pandemic (eg, those with lower income and less education), the findings of this study suggest that there has been a shift toward such beliefs within more economically advantaged subgroups and those more trusting of science. Restoring public trust in public health officials will require nuanced engagement with diverse groups.

Metrics and Evaluation Tools for Patient Engagement in Healthcare Organization- and System-Level Decision-Making: A Systematic Review.

BACKGROUND: Patient, public, consumer, and community (P2C2) engagement in organization-, community-, and systemlevel healthcare decision-making is increasing globally, but its formal evaluation remains challenging. To define a taxonomy of possible P2C2 engagement metrics and compare existing evaluation tools against this taxonomy, we conducted a systematic review. METHODS: A broad search strategy was developed for English language publications available from January 1962 through April 2015 in PubMed, Embase, Sociological Abstracts, PsycINFO, EconLit, and the gray literature. A publication was excluded if: (1) the setting was not healthcare delivery (ie, we excluded non-health sectors, such as urban planning; research settings; and public health settings not involving clinical care delivery); (2) the P2C2 engagement was episodic; or (3) the concept of evaluation or possible evaluation metrics were absent. To be included as an evaluation tool, publications had to contain an evaluative instrument that could be employed with minimal modification by a healthcare organization. RESULTS: A total of 199 out of 3953 publications met exclusion and inclusion criteria. These were qualitatively analyzed using inductive content analysis to create a comprehensive taxonomy of 116 possible metrics for evaluating P2C2 engagement. 44 outcome metrics were grouped into three domains (internal, external, and aggregate outcomes) that included six subdomains: impact on engagement participants, impact on services provided by the healthcare organization, impact on the organization itself, influence on the broader public, influence on population health, and engagement cost-effectiveness. The 72 process metrics formed four domains (direct process metrics; surrogate process metrics; aggregate process metrics; and preconditions for engagement) that comprised sixteen subdomains. We identified 23 potential tools for evaluating P2C2 engagement. The identified tools were published between 1973-2015 and varied in their coverage of the taxonomy, methodology used (qualitative, quantitative, or mixed), and intended evaluators (organizational leaders, P2C2 participants, external evaluators, or some combination). Parts of the metric taxonomy were absent from all tools. CONCLUSION: By comprehensively mapping potential outcome and process metrics as well as existing P2C2 engagement tools, this review supports high-quality P2C2 engagement globally by informing the selection of existing evaluation tools and identifying gaps where new tools are needed.

Physicians' perspectives regarding pragmatic clinical trials.

AIM: Practicing physicians inevitably become involved in pragmatic clinical trials (PCTs), including comparative effectiveness research. We sought to identify physicians' perspectives related to PCTs. METHODS: In-depth semistructured interviews with 20 physicians in the USA. RESULTS: Although physicians are generally willing to participate in PCTs, their support is predicated on several factors including expected benefits, minimization of time and workflow burdens and physician engagement. Physicians communicated a desire to respect patients' rights and interests while maintaining a high level of care. CONCLUSION: Future work is needed to systematically assess the impact of PCTs on clinicians in meeting their ethical obligations to patients and the burdens clinicians are willing to accept in exchange for potential benefits.

Palliative Care Consultation and Associated End-of-Life Care After Pacemaker or Implantable Cardioverter-Defibrillator Deactivation.

The presence of cardiac pacemakers and defibrillators complicates making end-of-life (EOL) medical decisions. Palliative care/medicine consultation (PCMC) may benefit patients and primary providers, but data are lacking. We retrospectively reviewed 150 charts of patients who underwent device deactivation at our tertiary care center (between November 1, 2008, and September 1, 2012), assessing for PCMC and outcomes. Overall, 42% of patients received a PCMC, and 68% of those PCMCs specifically addressed device deactivation. Median survival following deactivation was 2 days, with 42% of deaths occurring within 1 day of deactivation. There was no difference in survival between the groups. The EOL care for patients with implanted cardiac devices is complex, but PCMC may assist with symptom management and clarification of goals of care for such patients.

Patients' Views Concerning Research on Medical Practices: Implications for Consent.

BACKGROUND: Comparative effectiveness research (CER) and pragmatic clinical trials commonly test interventions that are in routine use and pose minimal incremental risk or burdens to patients who participate in this research. The objective of this study was to elicit the range of patients' views and opinions regarding a variety of different types of research on usual medical practices, especially notification and authorization for them. METHODS: We conducted twelve focus groups with adults in five U.S. cities-six focus groups addressing CER ("CER groups") and six groups addressing research involving hospital operations and clinician interventions ("Operations groups"). Participants discussed hypothetical research studies and potential methods of notifying patients and obtaining their authorization to participate. Group discussions were recorded, transcribed, and coded to identify patients' views related to research on standard medical practice. RESULTS: A total of ninety six people participated. Twelve key themes emerged from participants' discussions of the hypothetical research studies; these themes were then grouped into four general categories: clinical care; notification and authorization; communication; and conduct and design of research. The desire to be actively notified and asked was more prominent with regard to CER studies than with regard to Operations studies. CONCLUSIONS: Our data suggest that effective policy and guidance will involve balancing different patients' interests and potentially different sets of interests for different types of research studies on usual medical practices.

ICU-RESPECT: An index to assess patient and family experiences of respect in the intensive care unit.

PURPOSE: The purpose of the study is to develop a brief index of patient and family experiences of respect in the intensive care unit (ICU). MATERIALS AND METHODS: We designed a questionnaire with 44 items representing 12 themes that emerged from prior in-depth interviews with ICU patients and families. After pilot testing, items with minimal variability were eliminated. The resulting 21-item questionnaire was administered to patients and families in 5 adult ICUs. Psychometric analyses were conducted. RESULTS: Fifty-seven questionnaires were completed. Factor analysis resulted in a unidimensional scale consisting of 10 items with an α of .85 and an Eigen value of 11.3. Factor loadings ranged from 0.54 to 0.84, and item-test correlations ranged from 0.47 to 0.71. The mean total score was 7.25 out of a maximum of 10. Scores were lower for surgical than medical or disease-specific ICUs. CONCLUSIONS: The "ICU-RESPECT" index demonstrates high reliability and concurrent validity in ICU patients and families. Future research should validate this index in other ICU settings, assess its predictive validity, and evaluate different methods for maximizing response rate. As hospitals address patient experience more broadly in response to national metrics, the index could identify particular behaviors or ICUs that would benefit from interventions to enhance respectful treatment.

Choices for patients "without a choice": Interviews with patients who received a left ventricular assist device as destination therapy.

BACKGROUND: Patients undergo major physical and psychological changes after implantation of a left ventricular assist device as destination therapy (DT). We sought to qualitatively study outcomes and attitudes of patients after DT. METHODS AND RESULTS: Ambulatory outpatients with DT at our institution were invited to be interviewed between June and August 2011. In-person interviews were audio-recorded, transcribed, and analyzed qualitatively using thematic analysis. The study included 12 patients (11 men) from the Midwestern United States with a median age of 71.5 years (range, 33-78 years). Interviews were conducted at a median (range) time of 1.37 (0.43-5.04) years after DT implantation. Most patients were white (n=11), married (n=10), and Christian (n=10). We identified 6 themes commonly discussed by the interviewees: preparedness planning, new lease on life, optimizing support networks, systemic limitations, reflections on time, and communication matters. Analysis revealed that most patients saw DT as their only choice, despite other alternatives. CONCLUSIONS: Ambulatory patients reported varied experiences after DT but commonly reported gratitude for improved functional status and a perception of improved symptom burden. Recommendations for improving post-DT care include developing patient support systems, systematizing education for community providers, and expanding respite services.