People's information behavior during the COVID-19 pandemic was challenged through vast amounts of information, misinformation, and disinformation. This study sets out to address the research gap of ...longitudinal, qualitative inquiries about how people's information behavior changed during the COVID-19 pandemic. It aims to assess how residents of German-speaking Switzerland perceived and evaluated information gathering during a global health crisis. As part of the “Solidarity in Times of a Pandemic” (SolPan) Research Commons, 83 semi-structured interviews with residents of German-speaking Switzerland were conducted in April 2020 (T1), October 2020 (T2), and October 2021 (T3). People were asked about their lived experiences during the COVID-19 pandemic. Qualitative data analysis followed a reflexive thematic analysis approach, using Wilson's model of information behavior as a theoretical framework. Participants perceived high-quality journalistic news media, the Swiss national government, scientific experts, and their direct social environment as trustworthy information sources. They were motivated to gather information through the wish of gaining agency and certainty in the context of a major, global health crisis. Intervening variables that hindered information seeking included a perceived lack of agency, habituation effects in the later stages of the pandemic, information overload, inconsistent information, and conspiracy theories. While information needs were generally high in T1, participants expressed a growing extent of information fatigue in T2. In T3, the most prominent themes were conflicting information and differing interpretations, which led to an increased perception of societal polarization, which was perceived as a direct consequence of participants' information behavior. This finding is contextualized through established models of attitude formation: The study indicates how participants formed rather stable attitudes over time and how this led to a growing polarization and societal segmentation as the pandemic progressed. Practical implications regarding how to meet such societal polarization during crises are discussed.
•This qualitative study shows how information behavior changed during COVID-19.•Information behavior exacerbated societal polarization.•Information needs resulted from a wish to gain agency and certainty.•Experts were assigned a central role in the navigation of information gathering.•Findings underline the importance of high-quality journalism during crisis.
Solidarity and personal responsibility have been repeatedly called upon during the COVID-19 pandemic. This study quantifies and contextualizes the use of these terms in newspaper coverage in Germany ...and German-speaking Switzerland based on n = 640 articles from six functionally equivalent newspapers. The term solidarity in the context of the COVID-19 pandemic was mentioned in 541/640 articles (84.5%) and was primarily used during phases with high death rates and comparatively stringent policies in place, supporting the idea that solidarity was used to explain restrictive measures to the population and motivate people to comply with these measures. German newspapers published more articles on solidarity than Swiss-German newspapers, consistent with more stringent COVID-19 policies in Germany. Personal responsibility was mentioned in 133/640 articles (20.8%), meaning that the term was less frequently discussed than solidarity. Articles covering personal responsibility included more negative evaluations during phases of high infection rates as compared to phases of low infection rates. Findings indicate that the two terms were, at least to some extent, used in newspaper reporting to contextualize and justify COVID-19 policy during phases of high infection rates. Moreover, the term solidarity was used in a high variety of different contexts and the inherent limits of solidarity were rarely mentioned. Policymakers and journalists need to take this into account for future crises to not jeopardize the positive effects of solidarity.
•Solidarity and personal responsibility in the media justified COVID-19 policy.•German and Swiss newspapers hardly mentioned the limits of solidarity.•The term “solidarity” was used in a high variety of contexts.•Solidarity was more often mentioned than personal responsibility.
In contrast to neighboring countries, German and Swiss authorities refrained from general curfews during the first pandemic wave in spring 2020, calling for solidarity and personal responsibility ...instead. Using a qualitative methodology, this study aims to explore why people in Germany and Switzerland were motivated to comply with policy measures during the first wave of the coronavirus disease 2019 (COVID-19) pandemic, and what factors hindered or limited their motivation. While quantitative surveys can measure the level of compliance, or broadly ask what motives people had for compliance, we here strive to explain
and
these motives lead to compliance.
This publication has been made possible by the joint work of the members of the "Solidarity in times of pandemics" (SolPan) research commons. Seventy-seven semi-structured qualitative interviews were conducted with members of the general public in Germany (n = 46) and the German-speaking part of Switzerland (n = 31) in April 2020. Interviews were transcribed and analyzed following a grounded theory approach.
Three themes were identified that summarize factors contributing to compliant or noncompliant behavior. (1) Social cohesion was, on the one hand, an important motivator for compliance, but at the same time related to conflicting needs, illustrating the limits of compliance. (2) Consequences were considered on both the individual level (eg, consequences of individual infection) and societal level (eg, the societal and economic consequences of restrictions). (3) While for some participants following the rules was perceived as a matter of principle, others stressed the importance of making their own risk assessment, which was often associated with with a need for evidence on the effectiveness and reasons behind measures.
A variety of motives contribute to COVID-19 related compliance. Authorities should seek to address these multi-faceted aspects to support motivation for compliance in a large proportion of the population.
The number of market approvals of orphan medicinal products (OMPs) has been increasing steadily in the last 3 decades. While OMPs can offer a unique chance for patients suffering from rare diseases, ...they are usually very expensive. The growing number of approved OMPs increases their budget impact despite their low prevalence, making it pressing to find solutions to ethical challenges on how to fairly allocate scarce healthcare resources under this context. One potential solution could be to grant OMPs special status when considering them for reimbursement, meaning that they are subject to different, and less stringent criteria than other drugs. This study aims to provide a systematic analysis of moral reasons for and against such a special status for the reimbursement of OMPs in publicly funded healthcare systems from a multidisciplinary perspective.
With a systematic review of reasons, we identified 39 reasons represented in 243 articles (scientific and grey literature) for and against special status for the reimbursement of OMPs, then categorized them into nine topics. Taking a multidisciplinary perspective, we found that most articles came from health policy (n = 103) and health economics (n = 49). More articles took the position for a special status of OMPs (n = 97) than those against it (n = 31) and there was a larger number of reasons identified in favour (29 reasons) than against (10 reasons) this special status.
Results suggest that OMP reimbursement issues should be assessed and analysed from a multidisciplinary perspective. Despite the higher occurrence of reasons and articles in favour of a special status, there is no clear-cut solution for this ethical challenge. The binary perspective of whether or not OMPs should be granted special status oversimplifies the issue: both OMPs and rare diseases are too heterogeneous in their characteristics for such a binary perspective. Thus, the scientific debate should focus less on the question of disease prevalence but rather on how the important variability of different OMPs concerning e.g. target population, cost-effectiveness, level of evidence or mechanism of action could be meaningfully addressed and implemented in Health Technology Assessments.
Social media recruitment for clinical studies holds the promise of being a cost-effective way of attracting traditionally marginalized populations and promoting patient engagement with researchers ...and a particular study. However, using social media for recruiting clinical study participants also poses a range of ethical issues.
This study aims to provide a comprehensive overview of the ethical benefits and risks to be considered for social media recruitment in clinical studies and develop practical recommendations on how to implement these considerations.
On the basis of established principles of clinical ethics and research ethics, we reviewed the conceptual and empirical literature for ethical benefits and challenges related to social media recruitment. From these, we derived a conceptual framework to evaluate the eligibility of social media use for recruitment for a specific clinical study.
We identified three eligibility criteria for social media recruitment for clinical studies: information and consent, risks for target groups, and recruitment effectiveness. These criteria can be used to evaluate the implementation of a social media recruitment strategy at its planning stage. We have discussed the practical implications of these criteria for researchers.
The ethical challenges related to social media recruitment are context sensitive. Therefore, social media recruitment should be planned rigorously, taking into account the target group, the appropriateness of social media as a recruitment channel, and the resources available to execute the strategy.
The increasing use of social media opens new opportunities for recruiting patients for research studies. However, systematic evaluations indicate that the success of social media recruitment in terms ...of cost-effectiveness and representativeness depends on the type of study and its purpose.
This study aims to explore the practical benefits and challenges of recruiting study participants with social media in the context of clinical and nonclinical studies and provide a summary of expert advice on how to conduct social media-based recruitment.
We conducted semistructured interviews with 6 patients with hepatitis B who use social media and 30 experts from the following disciplines: (1) social media researchers or social scientists, (2) practical experts for social media recruitment, (3) legal experts, (4) ethics committee members, and (5) clinical researchers. The interview transcripts were analyzed using thematic analysis.
We found diverging expert opinions regarding the challenges and benefits of social media recruitment for research studies in four domains: (1) resources needed, (2) representativeness, (3) web-based community building, and (4) privacy considerations. Moreover, the interviewed experts provided practical advice on how to promote a research study via social media.
Even though recruitment strategies should always be sensitive to individual study contexts, a multiplatform approach (recruiting via several different social media platforms) with mixed-methods recruitment (web-based and offline recruitment channels) is the most beneficial recruitment strategy for many research studies. The different recruitment methods complement each other and may contribute to improving the reach of the study, the recruitment accrual, and the representativeness of the sample. However, it is important to assess the context- and project-specific appropriateness and usefulness of social media recruitment before designing the recruitment strategy.
Aims:
Because media portrayal reflects and shapes public opinion and health policy, investigating news coverage of public health issues is highly relevant for public health research and practice. ...Addressing a topical issue, this study investigated how newspaper coverage framed COVID-19 vaccines in Austria and German-speaking Switzerland and how it developed over time.
Methods:
A quantitative newspaper content analysis of six newspapers from Austria and German-speaking Switzerland published between January 1 and 31, 2022 was conducted. Frames were identified for each country separately through hierarchical cluster analysis (Ward’s method) based on frame elements.
Results:
Four frames were identified in both countries: (1) Evaluating new vaccines, (2) Discussing mandates, (3) Promoting vaccination, (4) Mentioning vaccines. In Frames 1 (Switzerland 86.4%, Austria 93.3%) and 3 (Switzerland 92.7%, Austria 98.9%), most articles included vaccine-endorsing statements, with Swiss coverage including additional negative statements more often than Austrian coverage (43.2%/44.6% vs 4.0%/3.3%). Frame 2 was closely linked to vaccine skepticism only in Austria and contained more evaluative statements in Austrian newspapers (25.4% endorsing, 35.4% rejecting; in Switzerland 14.5%/18.1%). The Austrian tabloid Kronen Zeitung published most articles (497/1091, 45.6%).
Conclusions:
The commercialized and comparatively high share of tabloid news coverage in Austria may have contributed to oversimplified and polarizing COVID-19 vaccine debates in this context. Insufficiently balanced and adequate information may contribute to a loss of public trust in vaccination and may therefore affect vaccination uptake. Authorities and public health professionals should consider this effect when designing information campaigns.
Decision-making concerning predictive genetic testing for hereditary cancer syndromes is inherently complex. This study aims to investigate what kind of complexities adults undergoing genetic ...counseling in Switzerland experience, how they deal with them, and what heuristics they use during the decision-making process.
Semi-structured qualitative interviews with eighteen Swiss adults seeking genetic counseling for hereditary cancer syndrome genetic testing and two counseling physicians were conducted and analyzed using a grounded theory approach.
Counselees stated that once they were aware of their eligibility for genetic testing they perceived an inevitable necessity to make a decision in a context of uncertainties. Some counselees perceived this decision as simple, others as very complex. High emotional involvement increased perceived complexity. We observed six heuristics that counselees used to facilitate their decision: Anticipating the test result; Focusing on consequences; Dealing with information; Interpreting disease risk; Using external guidance; and (Re-)Considering the general uncertainty of life.
Our findings are limited to the context of predictive genetic testing for hereditary cancer syndromes. This qualitative study does not allow extrapolation of the relative frequency of which heuristics occur.
The use of heuristics is an inherent part of decision-making, particularly in the complex context of genetic testing for inherited cancer predisposition. However, some heuristics increase the risk of misinterpretation or exaggerated external influences. This may negatively impact informed decision-making. Thus, this study illustrates the importance of genetic counselors and medical professionals being aware of these heuristics and the individual manner in which they might be applied in the context of genetic testing decision-making. Findings may offer practical support to achieve this, as they inductively focus on the counselees' perspective.
While solidarity practices were important in mitigating the Coronavirus Disease 2019 (COVID-19) pandemic, their limits became evident as the pandemic progressed. Taking a longitudinal approach, this ...study analyses German residents' changing perceptions of solidarity practices during the COVID-19 pandemic and examines potential reasons for these changes.
Adults living in Germany were interviewed in April 2020 (n = 46), October 2020 (n = 43) and October 2021 (n = 40) as part of the SolPan Research Commons, a large-scale, international, qualitative, longitudinal study uniquely situated in a major global public health crisis. Interviews were analysed using qualitative content analysis.
While solidarity practices were prominently discussed and positively evaluated in April 2020, this initial enthusiasm waned in October 2020 and October 2021. Yet, participants still perceived solidarity as important for managing the pandemic and called for institutionalized forms of solidarity in October 2020 and October 2021. Reasons for these changing perceptions of solidarity included (i) increasing personal and societal costs to act in solidarity, (ii) COVID-19 policies hindering solidarity practices, and (iii) a perceived lack of reciprocity as participants felt that solidarity practices from the state were not matching their individual efforts.
Maintaining solidarity contributes to maximizing public health during a pandemic. Institutionalized forms of solidarity to support those most in need contribute to perceived reciprocity among individuals, which might increase their motivation to act in solidarity. Thus, rather than calling for individual solidarity during times of crisis, authorities should consider implementing sustaining solidarity-based social support systems that go beyond immediate crisis management.
The promotion of health literacy was a key public health strategy during the COVID-19 pandemic. However, the role of social networks and relationships for support with health literacy-related tasks ...in the context of the COVID-19 pandemic is scarcely understood. Moving beyond traditional notions of health literacy, which focus on individual skills and knowledge, this study uses the concept of distributed health literacy to explore how individuals make meaning of and respond to health literacy and make their literacy skills available to others through their relational and socially situated and lived experiences of the COVID-19 pandemic. Drawing on 89 semi-structured interviews conducted in three European countries (Italy, Portugal, and Switzerland) between October and December 2021, we found narratives of stabilization, hybridization, and disruption that show how health literacy concerning COVID-19 is a complex social construct intertwined with emotional, cognitive, and behavioral responses distributed among individuals, communities, and institutions within socioeconomic and political contexts that affect their existence. This paper opens new empirical directions to understand the critical engagement of individuals and communities toward health information aimed at making sense of a complex and prolonged situation of uncertainty in a pandemic.
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