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1.
Soc Sci Med ; 344: 116647, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38335716

RESUMEN

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.


Asunto(s)
COVID-19 , Humanos , Pandemias , Suiza , Estudios Longitudinales , Etnicidad
2.
BMC Public Health ; 24(1): 23, 2024 01 02.
Artículo en Inglés | MEDLINE | ID: mdl-38166737

RESUMEN

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.


Asunto(s)
COVID-19 , Adulto , Humanos , COVID-19/epidemiología , Estudios Longitudinales , Pandemias , Alemania/epidemiología , Investigación Cualitativa
3.
Health (London) ; : 13634593231215715, 2023 Dec 14.
Artículo en Inglés | MEDLINE | ID: mdl-38095184

RESUMEN

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.

4.
Eur J Hum Genet ; 31(12): 1398-1406, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37773517

RESUMEN

The use of genome-wide sequencing (GWS) in paediatrics has added complexity to informed consent (IC) and pretest counselling because of the vast number and interpretation of potential findings, and their implications. However, empirical data from continental Europe on these issues remains limited. This study therefore aimed to explore the experiences and views of medical geneticists working with children in Germany and Switzerland regarding the challenges of obtaining valid IC in paediatric GWS. Qualitative interviews with 20 medical geneticists were analysed employing reflexive thematic analysis. In the interviews, many medical geneticists questioned the validity of parents' IC due to the enormous amount of relevant information given and the variety and complexity of the possible test outcomes. Key barriers identified included familial implications, administrative challenges and struggles with non-directiveness. Medical geneticists' suggestions for improvement included increasing the number of genetics professionals and better information material, which is crucial as GWS becomes a diagnostic standard in the early care pathways of children. An adjustment of aspirations from still existing ideal of traditional fully IC to appropriate IC seems to be needed. Such a more realistic and ethically sound adaptation of the requirements for IC can lead to better 'informedness' and improve the validity of the consent. This might also help reduce the moral distress for the medical geneticists involved.


Asunto(s)
Sueños , Consentimiento Informado , Humanos , Niño , Suiza , Investigación Cualitativa , Alemania
5.
Scand J Public Health ; : 14034948231195388, 2023 Aug 30.
Artículo en Inglés | MEDLINE | ID: mdl-37646484

RESUMEN

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.

6.
Med Humanit ; 49(4): 511-520, 2023 Dec 19.
Artículo en Inglés | MEDLINE | ID: mdl-37277183

RESUMEN

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.


Asunto(s)
COVID-19 , Pandemias , Humanos , Europa (Continente) , Humanidades , Investigación Cualitativa
7.
J Med Internet Res ; 25: e44587, 2023 05 22.
Artículo en Inglés | MEDLINE | ID: mdl-37213177

RESUMEN

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.


Asunto(s)
Medios de Comunicación Sociales , Humanos , Selección de Paciente , Privacidad , Investigación Cualitativa
8.
SSM Popul Health ; 22: 101388, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-37008806

RESUMEN

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.

9.
Vaccine ; 41(12): 2084-2092, 2023 03 17.
Artículo en Inglés | MEDLINE | ID: mdl-36813665

RESUMEN

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.


Asunto(s)
COVID-19 , Vacunas contra la Influenza , Vacunas , Humanos , Vacunas contra la COVID-19 , COVID-19/prevención & control , Vacunación , Investigación Cualitativa , Europa (Continente)
10.
J Med Internet Res ; 24(9): e40848, 2022 Sep 07.
Artículo en Inglés | MEDLINE | ID: mdl-36074800

RESUMEN

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

11.
SSM Qual Res Health ; 2: 100158, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-36092769

RESUMEN

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.

12.
SSM Qual Res Health ; 2: 100051, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-35975169

RESUMEN

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.

13.
Front Public Health ; 10: 829904, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35493352

RESUMEN

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.


Asunto(s)
COVID-19 , Gripe Humana , Artefactos , COVID-19/prevención & control , Humanos , Gripe Humana/epidemiología , Máscaras , Pandemias/prevención & control
14.
J Med Internet Res ; 24(5): e31231, 2022 05 03.
Artículo en Inglés | MEDLINE | ID: mdl-35503247

RESUMEN

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.


Asunto(s)
Medios de Comunicación Sociales , Análisis Ético , Ética en Investigación , Humanos , Investigadores
15.
PLoS One ; 17(4): e0266659, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35390085

RESUMEN

Public perceptions of COVID-19 vaccines are critical in reaching protective levels of herd immunity. Vaccine skepticism has always been relatively high in Germany, and surveys suggest that over the course of the pandemic, enthusiasm for the COVID-19 vaccine has dropped. Looking at the period just prior to the approval of the Pfizer/BioNTech and Moderna vaccines in Germany in the latter half of 2020, this paper aims to assess the reasons for and against COVID-19 vaccine uptake among residents of Germany, and to provide in-depth qualitative data to better understand and address concerns surrounding the safety and efficacy of a COVID-19 vaccine. Our findings indicate that there is widespread trust in German institutions and health experts to provide a safe vaccine for those who need it most. However, interviewees also point to the need for more information and the centrality of support from trusted medical authorities in making individual vaccination decisions. We also present the complexity of individual positions on vaccination, and suggest that vaccine hesitancy in relation to COVID-19 needs to be understood as a nuanced, and socially malleable, territory. This indicates that the goal of a vaccination campaign is not only achieving 'herd immunity,' but also a social endorsement of the collaborative effort that is required for a vaccine to be successful.


Asunto(s)
COVID-19 , Vacunas , COVID-19/epidemiología , COVID-19/prevención & control , Vacunas contra la COVID-19 , Alemania/epidemiología , Humanos , Pandemias/prevención & control , SARS-CoV-2 , Confianza , Vacunación
16.
SSM Qual Res Health ; 2: 100035, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-35013736

RESUMEN

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.

17.
Crit Public Health ; 32(1): 5-18, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-37377839

RESUMEN

Mobile applications for digital contact tracing have been developed and introduced around the world in response to the COVID-19 pandemic. Proposed as a tool to support 'traditional' forms of contact-tracing carried out to monitor contagion, these apps have triggered an intense debate with respect to their legal and ethical permissibility, social desirability and general feasibility. Based on a large-scale study including qualitative data from 349 interviews conducted in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, the Netherlands, German-speaking Switzerland, the United Kingdom), this paper shows that the binary framing often found in surveys and polls, which contrasts privacy concerns with the usefulness of these interventions for public health, does not capture the depth, breadth, and nuances of people's positions towards COVID-19 contact-tracing apps. The paper provides a detailed account of how people arrive at certain normative positions by analysing the argumentative patterns, tropes and (moral) repertoires underpinning people's perspectives on digital contact-tracing. Specifically, we identified a spectrum comprising five normative positions towards the use of COVID-19 contact-tracing apps: opposition, scepticism of feasibility, pondered deliberation, resignation, and support. We describe these stances and analyse the diversity of assumptions and values that underlie the normative orientations of our interviewees. We conclude by arguing that policy attempts to develop and implement these and other digital responses to the pandemic should move beyond the reiteration of binary framings, and instead cater to the variety of values, concerns and expectations that citizens voice in discussions about these types of public health interventions.

18.
Int J Health Policy Manag ; 11(8): 1342-1353, 2022 08 01.
Artículo en Inglés | MEDLINE | ID: mdl-33949815

RESUMEN

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.


Asunto(s)
COVID-19 , Humanos , COVID-19/epidemiología , COVID-19/prevención & control , Suiza , SARS-CoV-2 , Motivación , Adhesión a Directriz , Alemania
19.
Soc Sci Med ; 292: 114634, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34883310

RESUMEN

While everyone has been impacted directly or indirectly by the COVID-19 pandemic and the measures to contain it, not everyone has been impacted in the same way and certainly not to the same degree. Media coverage in early 2020 emphasized the "unprecedented" nature of the pandemic, and some even predicted that the virus could be a global "equalizer." Ensuing debates over how the pandemic should be handled have often hinged on oppositions between protecting health and healthcare systems versus saving livelihoods and the economy, a dichotomy that we argue is false. Drawing on 482 interviews conducted in Germany, Italy, Ireland, Austria, German-speaking Switzerland and the UK over two points in a 6-month period as part of the 'Solidarity in times of Pandemics Research Consortium' (SolPan), we illustrate the ways that oppositions posed between saving lives or saving livelihoods fail to capture the entangled, long-standing nature of structural inequalities that have been revealed through the pandemic. Health- and wealth-related inequalities intersect to produce the "second pandemic," a term used by a research participant to explain the other forms of devastation that run in parallel with virus. Our findings thus complicate such dichotomies through a qualitative understanding of the pandemic as a lived experience. The pandemic emerges as a critical juncture which, in exacerbating these existing structural inequalities, also poses an opportunity to work to better resolve them.


Asunto(s)
COVID-19 , Europa (Continente)/epidemiología , Humanos , Italia , Pandemias , SARS-CoV-2
20.
PLoS One ; 16(11): e0260597, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34847204

RESUMEN

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


Asunto(s)
Consejo , Toma de Decisiones , Asesoramiento Genético , Pruebas Genéticas , Síndromes Neoplásicos Hereditarios , Adulto , Femenino , Heurística , Humanos , Masculino , Persona de Mediana Edad
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