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With the advent of COVID-19, adaptation became a norm. Research data-collection methods similarly required adaptation, birthing the use of virtual platforms as first-line data collection tools to adhere to COVID-19 restrictions. This chapter presents an autoethnographic account of virtual qualitative data collection. A PhD candidate shares her experience of conducting individual and focus group interviews virtually in a developing nation. A discussion of the narrative and recommendations for virtual qualitative data collection are provided.
Emerging societal expectations from biomedical research and intensifying international scientific competition are becoming existential matters. Based on a review of pertinent evidence, this article analyzes challenges and formulates public policy recommendations for improving productivity and impact of life sciences. Critical risks include widespread quality defects of research, particularly non-reproducible results, and narrow access to scientifically sound information giving advantage to health misinformation. In funding life sciences, the simultaneous shift to nondemocratic societies is an added challenge. Simply spending more on research will not be enough in the global competition. Considering the pacesetter role of the federal government, five national policy recommendations are put forward: (i) funding projects with comprehensive expectations of reproducibility; (ii) public–private partnerships for contemporaneous quality support in laboratories; (iii) making research institutions accountable for quality control; (iv) supporting new quality filtering standards for scientific journals and repositories, and (v) establishing a new network of centers for scientific health communications.
This study assesses the collective community capacity of the National COVID-19 Resiliency Network (NCRN), a multisectoral network mitigating the disproportionate impact of COVID-19 on minoritized populations.
Methods
From January to April 2022, we used two concurrent data collection methods: a Collective Community Capacity (C3) survey (n=65) and key informant interviews (KIIs) (n=26). The C3 assessed capacity for creation of a shared vision, engagement in community change, and distributive leadership. KIIs assessed perspectives on network formation and implementation. We used a convergent design and triangulation for interpretation.
Results
NCRN has growing collective community capacity. The C3 survey found high capacity for establishing a shared mission and evidence of mutual commitment, trust, and accountability. About three-quarters of respondents strongly agreed that partners addressed social, economic, and cultural barriers related to COVID-19. Interviewees valued NCRN leaders’ openness, availability, and willingness to listen. Partners learned from one another, increased their health communication capacity, and supported sustainability. They sought greater opportunities to partner and support decision-making.
Conclusions
NCRN developed a collaborative network with a shared vision of improving health equity during and beyond the COVID-19 pandemic, while identifying areas for improvement in distributive leadership. Findings can support other organizations seeking to build collective community capacity to address equity in public health emergencies.
Despite several empirical studies that have emphasized the problematic and ineffective way in which health organizations ‘correct’ information which does not come from them, they have not yet found ways to properly address vaccine hesitancy.
Objectives:
(1) Examining the responses of groups with different attitudes/ behaviors regarding vaccination; (2) Examining the effect of the common methods of correcting information regarding the response of subgroups, while examining issues of reliability, satisfaction, and information seeking, as well as how health organization tools aid the decision-making process regarding vaccines.
Methods:
A simulation study that included 150 parents of kindergarten children was carried out.
Results:
Significant difference was found among the various groups (with respect to vaccination behavior) regarding the extent of their trust in the Ministry of Health (χ2(3) = 46.33; P < 0.0001), the reliability of the Ministry of Health’s response (χ2(3) = 31.56; P < 0.0001), satisfaction with the Ministry of Health’s response (χ2(3) = 25.25; P < 0.0001), and the level of help they felt the Ministry of Health’s tools provided them regarding vaccine-related decision making (χ2(3) = 27.76; P < 0.0001).
Conclusion:
It is important for health organizations to gain the public’s trust, especially that of pro-vaccination groups with hesitant attitudes, while addressing the public’s fears and concerns.
Military culture relies on hierarchy and obedience, which contradict the implementation and use of collaborative care models. In this commentary, a team of lived experience, clinical and research experts discuss, for the first time, cultural, communication and policy considerations for implementing collaborative care models in military mental healthcare settings.
Research has shown that patients with somatoform disorders (SFD) have difficulty using medical reassurance (i.e. normal results from diagnostic testing) to revise concerns about being seriously ill. In this brief report, we investigated whether deficits in adequately interpreting the likelihood of a medical disease may contribute to this difficulty, and whether patients’ concerns are altered by different likelihood framings.
Methods
Patients with SFD (N = 60), patients with major depression (N = 32), and healthy volunteers (N = 37) were presented with varying likelihoods for the presence of a serious medical disease and were asked how concerned they are about it. The likelihood itself was varied, as was the format in which it was presented (i.e. negative framing focusing on the presence of a disease v. positive framing emphasizing its absence; use of natural frequencies v. percentages).
Results
Patients with SFD reported significantly more concern than depressed patients and healthy people in response to low likelihoods (i.e. 1: 100 000 to 1:10), while the groups were similarly concerned for likelihoods ⩾1:5. Across samples, the same mathematical likelihood caused significantly different levels of concern depending on how it was framed, with the lowest degree of concern for a positive framing approach and higher concern for natural frequencies (e.g. 1:100) than for percentages (e.g. 1%).
Conclusions
The results suggest a specific deficit of patients with SFD in interpreting low likelihoods for the presence of a medical disease. Positive framing approaches and the use of percentages rather than natural frequencies can lower the degree of concern.
To assess gaps and barriers to effective health communication during epidemics, pandemics, and mass health emergencies.
Methods:
A systematic literature review was conducted in PubMed (National Library of Medicine, Maryland, USA), SCOPUS (Elsevier, Amsterdam, Netherlands), Cochrane (Cochrane, London, UK), and grey literature between 2000 to 2020.
Results:
16043 of 16535 identified citations were eliminated through title/ abstracts screening, 437 through full-text review and 55 articles were assessed qualitatively. Key barriers to effective health communication included misinformation, distrust, limited collaboration, and messaging inconsistency. Lack of information/ research was not the primary challenge. Major gaps were in mass and social media strategies, characteristics of messages, sociocultural contexts, digital communication, rapid response, providers’ attitude and perception, and information source characteristics. Health messaging should be adaptable to information outlets and tailored for the most vulnerable. Denigration of individuals with inaccurate beliefs increases misinformation and baseline knowledge differences and fears should be addressed without polarization. Involving frontline providers in health communication strategies is crucial.
Conclusions:
Primary reason for misinformation is the failure of health sector to convincingly convey accurate information. With input from all stakeholders, especially trusted members of communities and providers, health communication should include reinvestment in methods, multidimensional and multidisciplinary approaches, consistent frameworks, improved social media usage, clear, simple, and targeted messaging, and addressing systematic disinformation and misinformation with intention.
Racism significantly contributes to inequitable care quality and outcomes for people of color with serious illness, their families, and their communities. Clinicians use serious illness communication (SIC) to foster trust, elicit patients’ needs and values, and deliver goal-concordant services. Current SIC tools do not actively guide users to incorporate patients’ experiences with racism into care.
Objectives
1) To explicitly address racism during SIC in the context of the patient’s lived experience and 2) to provide race-conscious SIC recommendations for clinicians and researchers.
Methods
Applying the conceptual elements of Public Health Critical Race Praxis to SIC practice and research through reflection on inclusive SIC approaches and a composite case.
Results
Patients’ historical and ongoing narratives of racism must be intentionally welcomed in physically and psychologically safe environments by leveraging empathic communication opportunities, forging antiracist palliative care practices, removing interpersonal barriers to promote transparent patient–clinician relationships, and strengthening organizational commitments to strategically dismantle racism. Race-conscious SIC communication strategies, skills, and examples of talking points are provided.
Discussion
Race-conscious SIC practices may assist to acknowledge racial dynamics within the patient–clinician encounter. Furthermore, race-conscious SIC may help to mitigate implicit and explicit bias in clinical practices and the exclusionary research cultures that guide them.
Previous studies have found negative ageing narratives in the media during the COVID-19 pandemic. However, few have focused on compassionate ageism and how the news responded to the progression of the COVID-19 pandemic. We investigated (a) media themes of negative and compassionate ageism and (b) their relationships with COVID-19 parameters and the public health response. The sample included 1,197 articles relevant to COVID-19 and older people in Hong Kong published between January and December 2020. We used thematic analysis to identify themes from the news articles and structural equation modelling to explore these themes' relationship with the number of older people infected, effective reproduction number, number of COVID-19 deaths and public health response parallel in time. Pandemic-related variables were lagged for a day – the time needed to be reflected in the news. Two negative ageism themes portrayed older people as vulnerable to COVID-19 but counterproductive in combating the pandemic. Two compassionate ageism themes depicted older people as a homogenous group of passive assistance recipients. The theme blaming older people was associated with the number of confirmed infections (β = 0.418, p = 0.002) but vulnerability of older people was not associated with pandemic-related variables. The theme helping older people was negatively associated with the percentage of older people in confirmed infections (β = −0.155, p = 0.019). The theme resources available was negatively associated with confirmed infections (β = −0.342, p < 0.001) but positively associated with the Containment and Health Index (β = 0.217, p = 0.005). Findings suggested that negative and compassionate ageism were translated into narratives about older people in the media as the pandemic evolved but did not address the actual risk they faced. Media professionals should be aware of the potential negative and compassionate ageism prompted by the news agenda and promote adequate health behaviours and responses.
Misinformation and disinformation during infectious disease outbreaks can hinder public health responses. This analysis examines comments about masks and COVID-19 vaccines on Twitter during the first six months of the COVID-19 pandemic. We conducted a content analysis of 6,600 randomly selected English-language tweets, examining tweets for health, political, of societal frames; inclusion of true information, false information, partially true/misleading information, and/or opinion; political components; risk frames; and use of specific types of rumor. We found false and partially false information in 22% of tweets in which we were able to assess veracity. Tweets with misinformation were more likely to mention vaccines, be political in nature, and promote risk elevating messages (p<0.5). We also found false information about vaccines as early as January 2020, nearly a year before COVID-19 vaccines became widely available. These findings highlight a need for new policies and strategies aimed to counter harmful and misleading messaging.
During the COVID-19 pandemic, public health guidance (e.g., regarding the use ofnon-medical masks) changed over time. Although many revisions were a result ofgains in scientific understanding, we nonetheless hypothesized that makingchanges in guidance salient would negatively affect evaluations of experts andhealth-protective intentions. In Study 1 (N = 300), wedemonstrate that describing COVID-19 guidance in terms of inconsistency (versusconsistency) leads people to perceive scientists and public health authoritiesless favorably (e.g., as less expert). For participants in Canada(n = 190), though not the U.S. (n = 110),making guidance change salient also reduced intentions to download a contacttracing app. In Study 2 (N = 1399), we show that a briefforewarning intervention mitigates detrimental effects of changes in guidance.In the absence of forewarning, emphasizing inconsistency harmed judgments ofpublic health authorities and reduced health-protective intentions, butforewarning eliminated this effect.
Public responses to a future novel disease might be influenced by a subset of individuals who are either sensitized or desensitized to concern-generating processes through their lived experiences during the coronavirus disease 2019 (COVID-19) pandemic. Such influences may be critical for shaping public health messaging during the next emerging threat.
Methods:
This study explored the potential outcomes of the influence of lived experiences by using a dynamic multiplex network model to simulate a COVID-19 outbreak in a population of 2000 individuals, connected by means of disease and communication layers. Then a new disease was introduced, and a subset of individuals (50% or 100% of hospitalized during the COVID-19 outbreak) was assumed to be either sensitized or desensitized to concern-generating processes relative to the general population, which alters their adoption of non-pharmaceutical interventions (social distancing).
Results:
Altered perceptions and behaviors from lived experiences with COVID-19 did not necessarily result in a strong mitigating effect for the novel outbreak. When public disease response is already strong or sensitization is assumed to be a robust effect, then a sensitized subset may enhance public mitigation of an outbreak through social distancing.
Conclusions:
In preparing for future outbreaks, assuming an experienced and disease-aware public may compromise effective design of effective public health messaging and mitigative action.
Racially and ethnically minoritized populations have been historically excluded and underrepresented in research. This paper will describe best practices in multicultural and multilingual awareness-raising strategies used by the Recruitment Innovation Center to increase minoritized enrollment into clinical trials. The Passive Immunity Trial for Our Nation will be used as a primary example to highlight real-world application of these methods to raise awareness, engage community partners, and recruit diverse study participants.
The objective was to investigate the serial mediating effects of perceived cognitive functioning, patient health communication, and treatment anxiety in the relationship between heart disease symptoms and overall generic health-related quality of life in children with heart disease from the patient perspective.
Methods:
Heart Disease Symptoms, Cognitive Problems, Communication and Treatment Anxiety Scales from Pediatric Quality of Life Inventory™ (PedsQL™) Cardiac Module and PedsQL™ 4.0 Generic Core Scales were completed by 278 children with CHD ages 8–18. A serial multiple mediator model analysis was conducted to test the sequential mediating effects of perceived cognitive functioning, patient health communication, and treatment anxiety as intervening variables in the relationship between the heart disease symptoms predictor variable and overall generic health-related quality of life.
Results:
Heart disease symptoms predictive effects on overall generic health-related quality of life were serially mediated in part by cognitive functioning, patient health communication, and treatment anxiety. In a predictive analytics model with age and gender demographic covariates, heart disease symptoms, perceived cognitive functioning, patient health communication, and treatment anxiety accounted for 67% of the variance in patient-reported overall generic health-related quality of life (p < 0.001), representing a large effect size.
Conclusions:
Perceived cognitive functioning, patient health communication, and treatment anxiety explain in part the mechanism of heart disease symptoms predictive effects on overall generic health-related quality of life in paediatric heart disease. Identifying the mediators of heart disease symptoms on overall generic health-related quality of life from the patient perspective may inform targeted clinical interventions and future patient-centred clinical research to improve overall daily functioning.
This chapter investigates whether Taiwanese university students find EL in health information difficult. On average, approximately 90% of them did not have difficulty understanding EL while about 10% of them did. The rates of difficulty appear to increase with the severity of the health condition. Furthermore, the higher the number of different elastic terms intensively used in the excerpt, the more difficulty the participants experience in understanding EL. Based on interviews with approximately 20 participants, we address what may cause the difficulty and identify six reasons (e.g., unfulfilled expectation of specific information, semantic fuzziness combined with insufficient health literacy, unclear instructions that do not match the needs of the patient and family, increased vagueness caused by the intensive use of EL). In order to understand participants’ attitudes towards EL and non-EL, we analysed the participants’ written feedback as to why they preferred EL or non-EL in the health context. Six frames were identified, each with two orientations. Four of the most frequently activated frames are communication, folk–idiosyncratic, trust–scepticism, and voluntary–involuntary action. Two social factors (i.e., gender and age) in relation to Taiwanese participants’ perceptions of and attitudes towards EL are also addressed.
On average only 6.8% of the participants found it difficult to understand the meaning of EL used in the English data. The findings show that participants’ attitudes towards the use of EL in online medical information differ in the six excerpts: while three excerpts with EL were preferred by most, the other three with non-EL were also favoured. On average, a neutral attitude emerged: close to a half of participants preferred EL and the other half non-EL. Twelve frames generated from the data explain why the participants made their choices as regards EL, non-EL, both or neither. The frames are categorised into three groups: language-focused, language-user-focused and diseased-focused. The first grouping consists of six frames: fluidity, informativeness, relevance, accuracy, clarity, and discourse management. They all adhere closely to cooperative principles and relevance theory framework . The second grouping consists of five frames: trustfulness, folk–individual, lay–professional, voluntary–involuntary and indifference. The third grouping is disease focused: choices were made closely linked to the nature of six diseases. This grouping is specific to medical communication.
The English data show that the most prevalent elastic expression is may, which occurs 10 times more than the least frequent, sometimes. The second highest, some, occurs four times more than sometimes. This indicates that may is far more a favoured choice of word than the other nine words on the top-10 words list, underlined by the fact that medical information is a matter of probability rather than being categorical.
Quite a few elastic terms on the Chinese top-10 list are similar to their English counterparts or near-counterparts: keneng (可能) and may; chang (常)/tongchang (通常) and usually/often; hen (很) and very; geng (更) and more; duo (多)/xuduo (許多) and many/most. These cover epistemic, scalar and approximate stretchers. While the most frequently used general stretcher in Chinese is deng, the most commonly used general stretcher in English is things. In terms of how the four categories of EL are distributed, the Chinese and the English data exhibit two different patterns, i.e., SC-AQ-GE-EP and EP-AQ-SC-GE respectively. A series of comparisons of the most-used stretchers of each of the four categories in the Chinese and the English corpora yield some interesting findings. There is a clear preferred epistemic stretcher in online health information in Chinese and in English respectively, i.e. keneng (可能) and may.
This chapter identifies various similarities and differences between the Taiwanese and Australian data. An approximate correlation was found between the severity of a disease and the difficulty of understanding EL. The intensity of items of EL in the excerpt also affects the perception of difficulty with EL. The more different elastic expressions there are in the excerpt, the higher the rate of difficulty the excerpt is likely to have. Our interview data further explain what makes it hard to understand EL. Some of the interview responses in Chinese correspond to those in English. Nevertheless, a striking difference was also identified as one response in the Taiwanese interview data was more oriented towards a perspective that considers society as a collective group or community, a phenomenon not found in the Australian data. Culture may also play a role, but culture cannot be simplified and reduced to one determinant held accountable for any given cultural differences. We suggest three broad factors that affect discourse comprehension difficulty caused by EL/VL: the reader, the health topic and the text.
Self-affirmation theory provides a sophisticated framework to understand individual differences in receptivity to health-risk communication. Health messages are often ineffective because reminders of health risks can create dissonanc, which causes people to react negatively against the perceived threat of the information. Self-affirmation interventions offer a brief and practical means of improving health communication and promoting positive change. The primary purpose of this chapter is to highlight the promise of self-affirmation in understanding and reducing mental health stigma. The chapter aims to provide a theoretical background and practical path forward for researchers and clinicians, public health professionals, mental health activists, and any persons interested in dismantling the negative stereotypes and judgments associated with mental health and seeking professional psychological help. Specifically, the chapter aims to (1) briefly summarize the relationship between mental health stigma and psychotherapy use, (2) describe self-affirmation theory and its applied intervention effects in reducing perceptions of psychological threat across levels of measurement, (3) describe a standardized method of inducing self-affirmation by reflecting on personal values, (4) examine self-affirmation’s extension to mental health stigma and professional help seeking, (5) explore potential underlying mechanisms of change, and (6) suggest future directions for research and practical application.