Swiss residents' information behavior perceptions during the COVID-19 pandemic: A longitudinal qualitative study.

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.

Solidarity and reciprocity during the COVID-19 pandemic: a longitudinal qualitative interview study from Germany.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Narratives about distributed health literacy during the COVID-19 pandemic.

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.

Between information campaign and controversy: a quantitative newspaper content analysis about COVID-19 vaccination in Switzerland and Austria.

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.

Solidarity during the COVID-19 pandemic: evidence from a nine-country interview study in Europe.

Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the intersection of philosophy, bioethics, social sciences and policy studies, this article explores how the practice-based understanding of solidarity formulated by Prainsack and Buyx helps shed light on these questions. Drawing on 643 qualitative interviews carried out in two phases (April-May 2020 and October 2020) in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, German-speaking Switzerland and the UK), the data show that interpersonal acts of solidarity are important, but that they are not sustainable without consistent support at the institutional level. As the pandemic progressed, respondents expressed a longing for more institutionalised forms of solidarity. We argue that the medical humanities have much to gain from directing their attention to individual health issues, and to collective experiences of health or illness. The analysis of experiences through a collective lens such as solidarity offers unique insights to understandings of the individual and the collective. We propose three essential advances for research in the medical humanities that can help uncover collective experiences of disease and health crises: (1) an empirical and practice-oriented approach alongside more normative approaches; (2) the confidence to make recommendations for practice and policymaking and (3) the pursuit of cross-national and multidisciplinary research collaborations.

Practical Benefits, Challenges, and Recommendations on Social Media Recruitment: Multi-Stakeholder Interview Study.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Newspaper coverage on solidarity and personal responsibility in the COVID-19 pandemic: A content analysis from Germany and German-speaking Switzerland.

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.

The social and socio-political embeddedness of COVID-19 vaccination decision-making: A five-country qualitative interview study from Europe.

The uptake ofCOVID-19 vaccines has varied considerably across European countries. This study investigates people's decision-making process regarding vaccination by analyzing qualitative interviews (n = 214) with residents from five European countries: Austria, Germany, Italy, Portugal, and Switzerland. We identify three factors that shape vaccination decision-making: individual experiences and pre-existing attitudes towards vaccination, social environment, and socio-political context. Based on this analysis, we present a typology of decision-making regarding COVID-19 vaccines, where some types present stable stances towards vaccines and others change over time. Trust in government and relevant stakeholders, broader social factors, and people's direct social environment were particularly relevant to these dynamics. We conclude that vaccination campaigns should be considered long-term projects (also outside of pandemics) in need of regular adjustment, communication and fine-tuning to ensure public trust. This is particularly pertinent for booster vaccinations, such as COVID-19 or influenza.

Correction: Ethical Issues in Social Media Recruitment for Clinical Studies: Ethical Analysis and Framework.

[This corrects the article DOI: 10.2196/31231.].

Democratic research: Setting up a research commons for a qualitative, comparative, longitudinal interview study during the COVID-19 pandemic.

The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized by an underlying solidaristic attitude of its members and its intrinsic organizational features in which research data and knowledge in the study is shared and jointly owned. As such, the project is peer-governed, rooted in (idealist) social values of academia, and aims at providing tools and benefits for its members. In this paper, we discuss challenges and solutions for qualitative studies that seek to operate as research commons.

Solidaristic behavior and its limits: A qualitative study about German and Swiss residents' behaviors towards public health measures during COVID-19 lockdown in April 2020.

Politicians, policymakers, and mass media alike have emphasized the importance of solidarity during the COVID-19 pandemic, calling for the need of social cohesion in society to protect risk groups and national healthcare systems. In this study, which is part of an international Consortium, we analyzed 77 qualitative interviews with members of the general public in Germany and German-speaking areas of Switzerland on solidaristic behavior and its limits during the first COVID-19 related lockdown in April 2020. We found interdependencies between the interpersonal, group, and state tiers of solidarity that offer insights into what promotes solidaristic practice and what does not. We argue that because solidarity does not have a necessary and sufficient normative value in itself, those wanting to promote solidarity need to consider these interdependencies to effectively implement policy measures. Our study shows that inter-societal solidarity was based on individual voluntary agency and promoted through recognizing a shared goal, shared values, or other communalities including group effort. It also shows that individuals held state authorities accountable for the same values and expect inter-societal reciprocity from the contractual level. Tensions between those complying or willing to follow recommendations voluntarily and those perceived as not promoting the shared goal, posed challenges for solidarity. Another challenge for solidaristic behavior was when acting in solidarity with others was in direct conflict with the needs of close ones. Our study provides a clearer picture of promoting and limiting factors concerning solidarity which is relevant when communicating health policy measures to individuals and groups.

The Social Meanings of Artifacts: Face Masks in the COVID-19 Pandemic.

Since the beginning of the COVID-19 pandemic, research has explored various aspects of face mask use. While most of the research explores their effectiveness to prevent the spread of the virus, a growing body of literature has found that using face masks also has social meaning. But what social meaning does it have, and how does this meaning express itself in people's practice? Based on 413 qualitative interviews with residents in five European countries (Austria, Belgium, Germany, Ireland, and Switzerland), we found that the meanings of face masks have changed drastically during the first months of the pandemic. While in spring 2020 people wearing them had to fear stigmatization, in autumn of 2020 not wearing masks was more likely to be stigmatized. Throughout the first year of the pandemic, we found that mask wearing had multiple and partly seemingly contradictory meanings for people. They were perceived as obstacles for non-verbal communication, but also a way to affirm friendships and maintain social contacts. They also signaled specific moral or political stances on the side of face mask wearers and non-wearers alike, expressed their belonging to certain communities, or articulated concern. In sum, our findings show how face masks serve as scripts for people to navigate their lives during the COVID-19 pandemic. We conclude that public and political discussions concerning face masks should include not only evidence on the epidemiological and infectiological effects of face masks, but also on their social meanings and their social effects.

Ethical Issues in Social Media Recruitment for Clinical Studies: Ethical Analysis and Framework.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Anticipating hopes, fears and expectations towards COVID-19 vaccines: A qualitative interview study in seven European countries.

Vaccine uptake is essential to managing the ongoing COVID-19 pandemic, and vaccine hesitancy is a persistent concern. At the same time, both decision-makers and the general population have high hopes for COVID-19 vaccination. Drawing from qualitative interview data collected in October 2020 as part of the pan-European SolPan study, this study explores early and anticipatory expectations, hopes and fears regarding COVID-19 vaccination across seven European countries. We find that stances towards COVID-19 vaccines were shaped by personal lived experiences, but participants also aligned personal and communal interests in their considerations. Trust, particularly in expert institutions, was an important prerequisite for vaccine acceptance, but participants also expressed doubts about the rapid vaccine development process. Our findings emphasise the need to move beyond the study of factors driving vaccine hesitancy, and instead to focus on how people personally perceive vaccination in their particular social and political context.

Motivations and Limits for COVID-19 Policy Compliance in Germany and Switzerland.

BACKGROUND: 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 why and how these motives lead to compliance. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

A systematic review of moral reasons on orphan drug reimbursement.

BACKGROUND: 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. RESULTS: 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. CONCLUSION: 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.

Examining information-seeking behavior in genetic testing for cancer predisposition: A qualitative interview study.

OBJECTIVE: This study aims to assess information needs and information sources and seeks to illustrate what at-risk individuals consider motivators of and barriers to information-seeking before and after genetic testing for cancer predisposition. METHODS: Semi-structured interviews with people seeking genetic counseling in Switzerland were analyzed qualitatively using thematic analysis. Wilson's model of information behavior was the theoretical framework. RESULTS: We identified four themes that illustrate motivators of and barriers to information-seeking: attitudes and emotions; knowledge; social environment; and demographic factors. We also elucidated information needs and collected participants' information sources. CONCLUSION: This study£s empirical approach helps healthcare professionals to understand their patients' behaviors and wishes concerning information-seeking more concretely than theoretical models alone. The study also identifies information gaps, especially outside the genetic counseling setting. PRACTICE IMPLICATIONS: Genetic counselors and other healthcare professionals need to purposefully assist patients in finding trustworthy and accessible information. Healthcare professionals in all disciplines need to be educated about predictive genetic testing.

Autonomy and social influence in predictive genetic testing decision-making: A qualitative interview study.

Beauchamp and Childress' definition of autonomous decision-making includes the conditions of intentionality, understanding, and non-control. In genetics, however, a relational conception of autonomy has been increasingly recognized. This article aims to empirically assess aspects of social influence in genetic testing decision-making and to connect these with principlist and relational theories of autonomy. We interviewed 18 adult genetic counsellees without capacity issues considering predictive genetic testing for cancer predisposition for themselves and two counselling physicians in Switzerland. We conducted a qualitative analysis, building on a grounded theory study about predictive genetic testing decision-making. We found that some participants agreed to predictive genetic testing predominantly because relatives wanted them to do it, with some even acting contrary to their own convictions. Others, in contrast, based their decision on purely individualistic reasons but expressed difficulties in explaining their decision to their social environment. Healthcare professionals had a critical influence on decision-making in many cases without being manipulative, as perceived by counsellees. Still, cases of coercion and social pressure occurred within social relationships. In conclusion, predictive genetic testing decision-making includes relational and individualistic aspects, and both are compatible with autonomous decision-making. While the principlist and relational notions of autonomy compete on a theoretical level, they are two sides of the same coin when used as analytical lenses for genetic testing decision-making. Social acceptance of refusal of testing should be improved to mitigate social pressure. Individuals should be encouraged to decide for themselves how much their social environment influences their decision regarding predictive genetic testing.

How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study.

Genetic testing decision-making for cancer predisposition is inherently complex. Understanding the mechanisms and influencing factors of the decision-making process is essential for genetic counselling and has not yet been investigated in Switzerland. This study's aim is thus to provide a theory about the individual's decision-making process regarding genetic testing for cancer predispositions in order to provide medical geneticists and genetic counsellors with insights into the needs and expectations of counsellees. We interviewed at-risk individuals who underwent genetic counselling in a clinical setting in Switzerland, using a grounded theory approach. Based on the interview data, we propose that a control-fate continuum, which is part of the individuals' life philosophy, importantly influences the decision-making process. Those in need for control decide differently compared with those leaving their future to fate. Several psychosocial factors influence the position on the control-fate continuum: "looking for certainty"; "anticipating consequences"; "being socially influenced"; "simplifying risks"; and "deciding intuitively vs reflectively". The control-fate continuum theory gives insights into the possible reasons behind decision-making regarding genetic testing for cancer predispositions. It includes both acceptors and decliners of genetic testing. Our theory helps healthcare professionals offering genetic counselling to anticipate problems within at-risk families and adapting their services to people's needs.

Factors associated with post-acute discharge location after hospital stay: a cross-sectional study from a Swiss hospital.

BACKGROUND: In 2012, Switzerland introduced the diagnosis-related group hospital payment system. Fearing that vulnerable patients may be discharged early, Acute and Transitional Care (ATC) was introduced to address the nursing care of patients who no longer needed an acute hospital stay. ATC is more costly for patients when compared to other discharge options like rehabilitation while providing less rehabilitative services. This study investigates factors associated with the place of discharge for patients in need of care. METHODS: Data was collected from 660 medical records of inpatients 50 years and older of the municipal hospital Triemli in Zurich, Switzerland. We used stepwise logistic regression to identify factors associated with their discharge into ATC or rehabilitation. RESULTS: Older patients with higher Delirium Observation Scale (DOS), lack of supplementary health insurance, resuscitation order and a lower social network were more likely to be discharged into ATC than rehabilitation. CONCLUSIONS: The association of supplementary health insurance and social network with discharge into ATC or rehabilitation is problematic because patients that are already vulnerable from a financial and social perspective are potentially discharged into a more costly and less rehabilitative post-acute care facility.