JBI systematic review protocol of text/opinions on how to best collect race-based data in healthcare contexts.

INTRODUCTION: Racialized population groups have worse health outcomes across the world compared with non-racialized populations. Evidence suggests that collecting race-based data should be done to mitigate racism as a barrier to health equity, and to amplify community voices, promote transparency, accountability, and shared governance of data. However, limited evidence exists on the best ways to collect race-based data in healthcare contexts. This systematic review aims to synthesize opinions and texts on the best practices for collecting race-based data in healthcare contexts. METHODS AND ANALYSES: We will use the Joanna Briggs Institute (JBI) method for synthesizing text and opinions. JBI is a global leader in evidence-based healthcare and provides guidelines for systematic reviews. The search strategy will locate both published and unpublished papers in English in CINAHL, Medline, PsycINFO, Scopus and Web of Science from 1 January 2013 to 1 January 2023, as well as unpublished studies and grey literature of relevant government and research websites using Google and ProQuest Dissertations and Theses. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement methodology for systematic reviews of text and opinion will be applied, including screening and appraisal of the evidence by two independent reviewers and data extraction using JBI's Narrative, Opinion, Text, Assessment, Review Instrument. This JBI systematic review of opinion and text will address gaps in knowledge about the best ways to collect race-based data in healthcare. Improvements in race-based data collection, may be related to structural policies that address racism in healthcare. Community participation may also be used to increase knowledge about collecting race-based data. ETHICS AND DISSEMINATION: The systematic review does not involve human subjects. Findings will be disseminated through a peer-reviewed publication in JBI evidence synthesis, conferences and media. PROSPERO REGISTRATION NUMBER: CRD42022368270.

Sociocultural and moral narratives influencing the decision to vaccinate among rheumatic disease patients: a qualitative study.

INTRODUCTION/OBJECTIVES: Vaccination is a process that involves individual, social, and ethical aspects, beyond public governance of vaccines or vaccination as a public health concern. The aim of this study is to describe the sociocultural and moral narratives that influence the decision to vaccinate in general and to vaccinate against COVID-19 specifically, among patients at the rheumatology units of two hospitals. METHODS: Qualitative study involving individual semi-structured interviews following an interview guide. We conducted a thematic analysis using the ATLAS.ti software, with further triangulation to verify concordance and aid in the interpretation of the data from a medical anthropology framework and using a narrative ethics approach to gain insight into the participants' underlying moral values. RESULTS: We interviewed 37 patients in total, along with 3 rheumatologists. Five core themes emerged from the analysis to understand the decision to vaccinate: (1) information about vaccines and disease, (2) perceived risk-benefit of vaccination, (3) the physician-patient relationship, (4) governance of vaccination programs, (5) attitudes towards vaccines. Individual and family experiences with vaccination are diverse depending on the type of vaccine. The COVID-19 vaccine, as a new medical technology, is met with more controversy leading to hesitancy. CONCLUSIONS: The decision to vaccinate among Mexican rheumatic disease patients can sometimes involve doubt and distrust, especially for those with a lupus diagnosis, but ultimately there is acceptance in most cases. Though patients make and value autonomous decisions, there is a collective process involving sociocultural and ethical aspects. Key points • The complexity of vaccine decision-making is better identified through a narrative, qualitative approach like the one used in this study, as opposed to solely quantitative approaches • Sociocultural and moral perspectives of vaccination shape decision-making and, therefore, highlight the importance of including patients in the development of effective clinical practice guidelines as well as ethically justified public policy • Sociohistorical context and personal experiences of immunization influence vaccine decision-making much more than access to biomedical information about vaccines, showing that approaches based on the information deficit model are inadequate to fight vaccine hesitancy.

Narrative Ethics, COVID-19, and Flawed Stories.

The bioethics literature has paid little attention to resistance to COVID-19 vaccination, despite the safety and effectiveness of vaccines and the heavy death toll of the virus. A narrative approach to the problem might begin with descriptions of good and bad narratives about vaccination. Bad stories about vaccination tend to be constructed backwards, starting with the desired conclusion (vaccination is dangerous or ineffective) and from that filling in needed "facts" to support the conclusion. Physicians need to act in more trustworthy ways in order to convince at least some patients to consider vaccination.

How does the pandemic end? Losing control of the COVID-19 pandemic illness narrative.

The end of a pandemic is as much a political act as biological reality. It is over not simply when case counts or deaths are reduced to some objectively determined acceptable level but also when, and if, the public accepts the stories that politicians and health officials tell about it. This paper has three aims. First, to develop the concept of a pandemic illness narrative - a public narrative that makes the experience of an outbreak meaningful to a community of people and explains when it will be finished. Using the case of the United States, the paper then examines how American state organisations and public health officials tried to disseminate a version of the 'restitution illness narrative' to make sense out of the COVID-19 pandemic and explain how it would ultimately end. Lastly, the paper describes the factors that made this narrative ultimately implausible to the American public. As most Americans are now seemingly indifferent about the pandemic, it has ended in the United States without ever actually being narratively concluded.

A systematic review of the burden of, access to services for and perceptions of patients with overweight and obesity, in humanitarian crisis settings.

INTRODUCTION: Excess body weight causes 4 million deaths annually across the world. The number of people affected by humanitarian crises stands at a record high level with 1 in 95 people being forcibly displaced. These epidemics overlap. Addressing obesity is a post-acute phase activity in non-communicable disease management in humanitarian settings. Information is needed to inform guidelines and timing of interventions. The objective of this review was to explore the prevalence of overweight and obesity in populations directly affected by humanitarian crises; the cascade of care in these populations and perceptions of patients with overweight and obesity. METHODS: Literature searches were carried out in five databases. Grey literature was identified. The population of interest was non-pregnant, civilian adults who had experience of humanitarian crises (armed conflict, complex emergencies and natural disasters). All study types published from January 1st, 2011, were included. Screening, data extraction and quality appraisal were carried out in duplicate. A narrative synthesis is presented. RESULTS: Fifty-six reports from forty-five studies were included. Prevalence estimates varied widely across the studies and by subgroups. Estimates of overweight and obesity combined ranged from 6.4% to 82.8%. Studies were heterogenous. Global distribution was skewed. Increasing adiposity was seen over time, in older adults and in women. Only six studies were at low risk of bias. Body mass index was the predominant measure used. There were no studies reporting cascade of care. No qualitative studies were identified. CONCLUSION: Overweight and obesity varied in crisis affected populations but were rarely absent. Improved reporting of existing data could provide more accurate estimates. Worsening obesity may be prevented by acting earlier in long-term crises and targeting risk groups. The use of waist circumference would provide useful additional information. Gaps remain in understanding the existing cascade of care. Cultural norms around diet and ideal body size vary.

Graphic Medicine-The Best of 2022.

This Arts and Medicine feature reviews 2 books published in 2022: a clinical ethics graphic medicine casebook illustrating how ethical dilemmas in clinical practice play out in real situations; and a graphic public health comics anthology showing how comics meet the needs of risk communication and health promotion.

Creation of an asynchronous faculty development curriculum on well-written narrative assessments that avoid bias.

BACKGROUND: The COVID-19 pandemic in parallel with concerns about bias in grading resulted in many medical schools adopting pass/fail clinical grading and relying solely on narrative assessments. However, narratives often contain bias and lack specificity. The purpose of this project was to develop asynchronous faculty development to rapidly educate/re-educate > 2000 clinical faculty spread across geographic sites and clinical disciplines on components of a well-written narrative and methods to minimize bias in the assessment of students. METHODS: We describe creation, implementation, and pilot data outcomes for an asynchronous faculty development curriculum created by a committee of volunteer learners and faculty. After reviewing the literature on the presence and impact of bias in clinical rotations and ways to mitigate bias in written narrative assessments, the committee developed a web-based curriculum using multimedia learning theory and principles of adult learning. Just-in-time supplemental materials accompanied the curriculum. The Dean added completion of the module by 90% of clinical faculty to the department chairperson's annual education metric. Module completion was tracked in a learning management system, including time spent in the module and the answer to a single text entry question about intended changes in behavior. Thematic analysis of the text entry question with grounded theory and inductive processing was used to define themes of how faculty anticipate future teaching and assessment as a result of this curricula. OUTCOMES: Between January 1, 2021, and December 1, 2021, 2166 individuals completed the online module; 1820 spent between 5 and 90 min on the module, with a median time of 17 min and an average time of 20.2 min. 15/16 clinical departments achieved completion by 90% or more faculty. Major themes included: changing the wording of future narratives, changing content in future narratives, and focusing on efforts to change how faculty teach and lead teams, including efforts to minimize bias. CONCLUSIONS: We developed a faculty development curriculum on mitigating bias in written narratives with high rates of faculty participation. Inclusion of this module as part of the chair's education performance metric likely impacted participation. Nevertheless, time spent in the module suggests that faculty engaged with the material. Other institutions could easily adapt this curriculum with provided materials.

The Effects of the Culturally Tailored Narratives on COVID-19 Vaccine Confidence Among Hispanics: A Randomized Online Experiment.

Guided by the health belief model (HBM), cultural sensitivity approach, and the theory of situated cognition, this study compares the effects of culturally tailored narratives and generic narratives on the COVID-19 vaccine confidence among Hispanics. It also examines an array of cognitive responses (perceived susceptibility, perceived severity, perceived benefits, perceived barriers, and perceived side effects) associated with the COVID-19 vaccine confidence, and the interaction of these cognitive responses with the two narrative types of messaging. The findings suggest that Hispanics exposed to culturally tailored narratives are more confident in the COVID-19 vaccine compared to Hispanics exposed to generic narratives. The study provides support for the HBM, as the perceived benefit was positively related to vaccine confidence, and the perceived barrier was negatively associated with vaccine confidence. Finally, vaccine confidence was the strongest among Hispanics who had high perceived susceptibility and were exposed to culturally tailored narratives.

Health visiting in the UK in light of the COVID-19 pandemic experience (RReHOPE): a realist review protocol.

INTRODUCTION: Health visiting services, providing support to under 5s and their families, are organised and delivered in very different ways in different parts of the UK. While there has been attention to the key components of health visiting practice and what works well and how, there is little research on how health visiting services are organised and delivered and how that affects their ability to meet their objectives. The COVID-19 pandemic rapidly disrupted service delivery from March 2020. This realist review aims to synthesise the evidence on changes during the pandemic to identify the potential for improving health visiting services and their delivery. METHODS AND ANALYSIS: This review will follow the RAMESES (Realist And Meta-narrative Evidence Syntheses: Evolving Standards) quality standards and Pawson's five iterative stages to locate existing theories, search for evidence, select literature, extract data, synthesise evidence and draw conclusions. It will be guided by stakeholder engagement with practitioners, commissioners, policymakers, policy advocates and people with lived experience. This approach will consider the emerging strategies and evolving contexts in which the services are delivered, and the varied outcomes for different groups. A realist logic of analysis will be used to make sense of what was happening to health visiting services during and following the pandemic response through the identification and testing of programme theories. Our refined programme theory will then be used to develop recommendations for improving the organisation, delivery and ongoing postpandemic recovery of health visiting services. ETHICS AND DISSEMINATION: General University Ethics Panel approval has been obtained from University of Stirling (reference 7662). Dissemination will build on links to policymakers, commissioners, providers, policy advocates and the public. A range of audiences will be targeted using outputs tailored to each. A final stakeholder event focused on knowledge mobilisation will aid development of recommendations. PROSPERO REGISTRATION NUMBER: CRD42022343117.

The COVID-19 Storytelling: Nurses, Patients and the Power of Death. / Storytelling del Covid-19: infermieri, pazienti e la forza del fine vita.

INTRODUCTION: Personal stories accompanying the COVID-19 pandemic are of utmost relevance when considering policy adjustments and future improvements in the field of nursing. METHODS: in order to gather data and offer a more detailed overview of the complexity of nurses' responsibilities in times of global health crisis, the method used is ethnographic research. RESULTS: The analisys demonstrates that the nature of the COVID-19 pandemic, characterized by major uncertainties, has altered nurses' daily routines to the extent that they have been exposed to additional sets of duties, as well as to the higher levels of exhaustion and risks with potentially fatal consequences. CONCLUSION: This narratives provide a valuable input to the debate on nurses' own status, as well as on the state of healthcare. This paper extends the current knowledge and contributes to wider discussions about nursing and our society's ability to handle outbreaks of large-scale health crises.

A Dynamic Analysis of Conspiratorial Narratives on Twitter During the Pandemic.

Since the breakout of COVID-19 in late 2019, various conspiracy theories have spread widely on social media and other channels, fueling misinformation about the origins of COVID-19 and the motives of those working to combat it. This study analyzes tweets (N = 313,088) collected over a 9-month period in 2020, which mention a set of well-known conspiracy theories about the role of Bill Gates during the pandemic. Using a topic modeling technique (i.e., Biterm Topic Model), this study identified ten salient topics surrounding Bill Gates on Twitter, and we further investigated the interactions between different topics using Granger causality tests. The results demonstrate that emotionally charged conspiratorial narratives are more likely to breed other conspiratorial narratives in the following days. The findings show that each conspiracy theory is not isolated by itself. Instead, they are highly dynamic and interwoven. This study presents new empirical insights into how conspiracy theories spread and interact during crises. Practical and theoretical implications are also discussed.

Managing the elephant in the room: responding to COVID-19's impact on data collection.

BACKGROUND: The global COVID-19 pandemic has affected data collection for many researchers, in particular research that involves face-to-face interviews. AIM: To share learning about the challenges encountered when face-to-face interviews could not continue as planned in a study and how to adapt data collection so that it can continue despite severe disruption. DISCUSSION: This article examines the considerations and actions taken by the authors to ensure the continuity of data collection. The research aimed to use narrative inquiry to understand the experiences of significant others supporting people in intensive care units with severe burn injuries. But the pandemic meant the researchers could not meet face-to-face with participants as originally intended and so they had to consider new ways to approach data collection. The authors explore the process of adapting the interviews to video conferencing and telephone use while preserving the study's person-centred focus to remain coherent with narrative methodology. CONCLUSION: Adapting data collection is valuable in ensuring the continuity of research. Careful consideration and planning are required to ensure the research remains robust and ethically sound. IMPLICATIONS FOR PRACTICE: Adapting data collection methods can allow for greater flexibility when participants cannot attend face-to-face interviews.

Promoting conspiracy theory: From AIDS to COVID-19.

Conspiracy theories (evidence-free, improbable narratives about powerful agents conspiring to harm people) circulated widely during the acquired immune deficiency syndrome (AIDS) and COVID-19 epidemics. They travelled over time and space, adapted to local conditions and anxieties, and were promoted for commercial and political purposes. Russian conspiracy theories claiming the viruses were United States bioweapons appeared in both epidemics. So did 'cultropreneurs' who, as a marketing strategy for their 'alternative' therapies, promoted conspiracy theories about scientific medicine. Pro-science activists sought to counter medical misinformation and debunk faux cures, but their task was harder in the 'post-truth' social-media driven context of COVID-19. Conspiracy theories about vaccines are an ongoing challenge for public health.

Ethnic inequalities in multiple long-term health conditions in the United Kingdom: a systematic review and narrative synthesis.

Indicative evidence suggests that minoritised ethnic groups have higher risk of developing multiple long-term conditions (MLTCs), and do so earlier than the majority white population. While there is evidence on ethnic inequalities in single health conditions and comorbidities, no review has attempted to look across these from a MLTCs perspective. As such, we currently have an incomplete understanding of the extent of ethnic inequalities in the prevalence of MLTCs. Further, concerns have been raised about variations in the way ethnicity is operationalised and how this impedes our understanding of health inequalities. In this systematic review we aimed to 1) describe the literature that provides evidence of ethnicity and prevalence of MLTCs amongst people living in the UK, 2) summarise the prevalence estimates of MLTCs across ethnic groups and 3) to assess the ways in which ethnicity is conceptualised and operationalised. We focus on the state of the evidence prior to, and during the very early stages of the pandemic. We registered the protocol on PROSPERO (CRD42020218061). Between October and December 2020, we searched ASSIA, Cochrane Library, EMBASE, MEDLINE, PsycINFO, PubMed, ScienceDirect, Scopus, Web of Science, OpenGrey, and reference lists of key studies/reviews. The main outcome was prevalence estimates for MLTCs for at least one minoritised ethnic group, compared to the majority white population. We included studies conducted in the UK reporting on ethnicity and prevalence of MLTCs. To summarise the prevalence estimates of MLTCs across ethnic groups we included only studies of MLTCs that provided estimates adjusted at least for age. Two reviewers screened and extracted data from a random sample of studies (10%). Data were synthesised using narrative synthesis. Of the 7949 studies identified, 84 met criteria for inclusion. Of these, seven contributed to the evidence of ethnic inequalities in MLTCs. Five of the seven studies point to higher prevalence of MLTCs in at least one minoritised ethnic group compared to their white counterparts. Because the number/types of health conditions varied between studies and some ethnic populations were aggregated or omitted, the findings may not accurately reflect the true level of ethnic inequality. Future research should consider key explanatory factors, including those at the macrolevel (e.g. racism, discrimination), as they may play a role in the development and severity of MLTCs in different ethnic groups. Research is also needed to ascertain the extent to which the COVID19 pandemic has exacerbated these inequalities.

A Mental Health Center Uses Photos To Connect People To Community.

A Denver program is helping people capture images and write narratives to help in their mental health recovery.

Social Networks May Shape Visually Impaired Older Adults' Occupational Engagement: A Narrative Inquiry.

Age-related vision loss (ARVL) has been shown to interfere with older adults' occupational engagement. The primary purpose was to examine the role social networks play in facilitating/constraining engagement in desired occupations for older adults with ARVL. This study adopted a constructivist narrative methodology. Five older adults, ≥ 60 years of age with ARVL, participated in three virtual interviews, which were coded using thematic analysis. Three overarching themes were identified: (a) Diverse Social Networks Fulfill Different Occupational and Psychosocial Needs, (b) Retaining a Sense of Independence through Seeking Reciprocity in Social Relationships, and (c) Community Mobility and Technology Support as Essential for Preserving Social Relationships. Findings broaden understandings of how informal/formal social networks are involved in shaping visually-impaired older adults' adaptation to ARVL and related occupational changes. Findings may help improve the quality and delivery of low-vision rehabilitation services to optimize their contribution to occupational engagement.

Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives.

BACKGROUND: Healthcare is witnessing a new disease with the emergence of Long Covid; a condition which can result in myriad symptoms, varying in frequency and severity. As new data are emerging to help inform treatment guidelines, the perspectives of those living with Long Covid are essential in informing healthcare practice. The research aimed to collect the narratives of people living with Long Covid to better understand the lived experience of this condition. In attempting to narrate complex or traumatic experiences the arts and humanities can offer alternative ways of expressing embodied narratives, representing rich sources of meaning. Therefore, the research specifically sought to elicit creative expressions from participants with lived experience of Long Covid. METHODS: Data were collected via an online repository where participants could submit their pieces of creative writing. Data were collected between August 2021 and January 2022 and a total of 28 submissions were received from participants. These were mostly written creative narratives. However, a small number were submitted as audio or video files of spoken word poetry or songs. Data collection was stopped once data saturation was achieved. RESULTS: The submissions were subjected to thematic analysis and five themes were generated. These five themes are Identity, social relationships, symptoms, interaction with healthcare systems and time. The results provide an insight into the experience of Long Covid as detailed by the participants' creative narratives. CONCLUSION: The results from this study provide a unique insight into the lived experience of Long Covid. In relation to clinical practice, the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms. PATIENT AND PUBLIC CONTRIBUTION: Before undertaking the research, Long Covid community groups were contacted to discuss the potential value of this study and it was widely supported. One of the leading Long Covid support groups was also involved in disseminating information regarding the project. As part of ongoing work within this project, members of the team are actively disseminating the results within Long Covid communities and seeking to develop arts-based workshops specifically for people with Long Covid.

[From Invisible to Visible - Validating Media Presence: Forging a New Image of Nursing in the Post-Pandemic Era].

The COVID-19 pandemic has increased the exposure and attention given to nurses in the global media. Although media outlets have repeatedly praised them as "heroes" or "angels", nurses continue to be regular targets of stigmatization during infectious outbreaks. The lack of a strong public image may be an important reason behind why the general public has yet to adequately understand and acknowledge the nursing profession. Therefore, new branding is needed to improve the public image of nursing in the post-pandemic era. In this article, common stereotypes regarding nurses are reviewed, the heroic narrative is introduced, and suggestions regarding how to leverage social media to improve the image of nursing are provided. To give nurses a more respected voice, make the invisible visible, and validate a stronger media presence in line with International Council of Nurses tenets, nurses should be united together under a shared professional image to be a positive force for global health.