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OBJECTIVE: This paper examines from a qualitative approach the role of a patient-centered website - named 'Oneself' - on patients' chronic low back pain self-management attitudes and behaviors in the Italian part of Switzerland. METHODS: In-depth interviews have been conducted with a purposive and convenient sample of 18 chronic low back pain sufferers who had used Oneself during 6 months. Data collection and analysis were driven by grounded theory. RESULTS: Reported positive effects of the use of Oneself on self-management attitudes and behaviors include self-comprehension, improvement of argumentative abilities, orientation, development of self-confidence and maintenance of a high level of attention. In some cases, participants affirm to have experienced negative effects such as confusion and discouragement. The individual's previous awareness of cLBP and level of self-management plays a main role in the way people use the website and in its impact. Based on this criterium, a typology of four patterns of use is drawn. CONCLUSION: Patient-centered websites are useful for enhancing self-management of chronic low back pain. However, individuals take advantage of this means differently, based on their stage of advancement in the self-management process. PRACTICE IMPLICATIONS: Information and supports provided online should be tailored according to people's stage of advancement. [ABSTRACT FROM AUTHOR]

To reduce the spread of COVID-19, schools closed and moved to remote learning in many countries and municipalities. At the time of this study, Switzerland maintained the position that schools should be prioritized to remain open. The state of knowledge regarding the challenges that school staff encountered during the pandemic was limited. The aim of this study was to qualitatively explore the impact of COVID-19 and related measures in Switzerland on the professional life of school staff in terms of challenges, strategies, and benefits. Data were collected between November 2021 and March 2022. We conducted interviews with 47 participants working in nurseries, kindergartens, primary, middle, special, and after-schools across Switzerland. The majority were women and part of the teaching staff. Most had received at least one dose of the COVID-19 vaccine. Participants reported various challenges such as isolation, loneliness, and 'dryness' of work, pedagogical alienation and deontological distress, privacy loss, and confusion regarding health measures. They also cited different strategies, namely resuming simple activities, finding the right degree of transgression, recreating normality with children, and continuous adaptation. Finally, they identified some benefits, i.e. improvements in education regarding hygiene standards, greater acceptance of illness and death as a normal part of life, recognition of the privilege of being able to attend school in-person, and valorization of cultural diversity. We highlight the importance of listening to staff's concerns, enacted strategies, and perceived benefits and taking them into account when developing appropriate and effective public health and communication efforts., (© The Author(s) 2024. Published by Oxford University Press on behalf of the European Public Health Association.)

Objective: We examined how responsibility (the "duty to inform relatives about genetic testing results") is understood and enacted among Swiss and Korean women carrying BRCA1 or BRCA2 pathogenic variants., Methods: In-depth interviews and/or focus groups with 46 Swiss and 22 Korean carriers were conducted, using an identical interview guide. Data were analyzed inductively and translated into English for cross-country comparisons., Results: We identified five modes of responsibility in both samples: Persuader, Enabler, Relayer, Delayer, and Decliner. The Enabler and Relayer modes were the most common in both countries. They followed the rational imperative of health and norms of competence and self-determination, respectively. The Relayer mode transmitted information without trying to influence relatives' decisions. The Delayer and Decliner modes withheld information, deeming it the best way to safeguard the family during that specific moment of its trajectory. Responsibility to disclose testing results was influenced by culturally diverging conceptions of the family unit and socio-contextual norms., Conclusion: Responsibility primarily reflects the imperative of health prevention; findings demonstrate various interpretations, including the sense of family caring achieved through controlled disclosure of genetic information., Practice Implications: Findings offer healthcare providers socio-anthropological insights to assist probands navigate the disclosure of genetic information within their families., Trial Registration Number: NCT04214210 (registered Nov 2, 2020), KCT 0005643 (registered Nov 23, 2020)., Competing Interests: Declaration of Competing Interest None, (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

In addressing global pandemics, robust cooperation across nations, institutions, and individuals is paramount. However, navigating the complexities of individual versus collective interests, diverse group objectives, and varying societal norms and cultures makes fostering such cooperation challenging. This research delves deep into the dynamics of interpersonal cooperation during the COVID-19 pandemic in Canton Ticino, Switzerland, using an integrative approach that combines qualitative and experimental methodologies. Through a series of retrospective interviews and a lab-in-the-field experiment, we gained insights into the cooperation patterns of healthcare and manufacturing workers. Within healthcare, professionals grappled with escalating emergencies and deteriorating work conditions, resisting the "new normalcy" ushered in by the pandemic. Meanwhile, manufacturing workers adapted to the altered landscape, leveraging smart working strategies to carve out a fresh professional paradigm amidst novel challenges and opportunities. Across these contrasting narratives, the centrality of individual, institutional, and interpersonal factors in galvanizing cooperation was evident. Key drivers like established relational dynamics, mutual dependencies, and proactive leadership were particularly salient. Our experimental findings further reinforced some of these qualitative insights, underscoring the pivotal role of recognition and the detrimental effects of uncertainty on cooperative behaviors. While contextual and sample-related constraints exist, this study illuminates vital facets of cooperation during crises and lays the groundwork for future explorations into cooperative decision-making., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Rotondi, Babazadeh, Landolfi, Luciani, Uccella, Dell'Oca, Rosselli, Botturi and Caiata Zufferey.)

The study adapted the Family Gene Toolkit and developed a customized web application for Swiss and Korean families harboring BRCA1 or BRCA2 pathogenic variants to support family communication of genetic testing results and promote cascade genetic testing among at-risk relatives. In the first step, narrative data from 68 women with BRCA1 / BRCA2 pathogenic variants and clinician feedback informed a culturally sensitive adaptation of the content consistent with current risk management guidelines. In the second step, the Information Technology team developed the functions and the interface of the web application that will host the intervention. In the third step, a new sample of 18 women from families harboring BRCA1 / BRCA2 pathogenic variants tested the acceptability and usability of the intervention using "think-aloud" interviews and a questionnaire. Participants expressed high levels of satisfaction with the intervention. They provided positive feedback for the information regarding active coping, strategies to enhance family communication, interactive elements, and illustrative stories. They reported that the information was useful and the web application was easy to navigate. Findings suggest that the Family Gene Toolkit is well-designed and can increase rates of cascade testing among at-risk relatives. Its efficacy will be tested in a subsequent randomized trial.

Health promotion and primary prevention are a priority in a healthcare system characterised by a prevalence of chronic conditions. In this context, motivational interviewing (MI) as provided by family doctors (FDs) seems promising: influential health professionals motivate patients to adopt healthy lifestyles in a patient-centred style that promotes a balanced, horizontal doctor-patient relationship. Based on these assumptions, a pilot project called Girasole was implemented in Switzerland between 2016 and 2018 to train and support 19 FDs in implementing MI in their practices. This paper presents the analysis of implementation of the intervention with the aim of exploring the doctors' experiences with MI through a qualitative research design. Data derive from focus groups and interviews with the participants, and from the observation of collective training sessions and follow-up meetings. A thematic analysis was conducted using the software Atlas.ti. Results show that there is great diversity in how FDs implement MI. FDs can be classified in four groups - convinced, interested, critical, and resistant - based on their adherence to the principles underlying the MI approach. This taxonomy highlights opportunities and challenges for family medicine: MI offers flexible tools and new ways of interacting with patients to meet the challenges of non-communicable and chronic diseases; at the same time, the issues associated with the medicalisation of human everyday problems, physicians' status loss, and low cost-effectiveness should not be underestimated. Any further attempt to promote MI among FDs should take into account their individual attitudes and should establish tailored approaches and training methods., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Author(s).)

Background: Hereditary breast and ovarian cancer and Lynch syndrome are associated with increased lifetime risk for common cancers. Offering cascade genetic testing to cancer-free relatives of individuals with HBOC or LS is a public health intervention for cancer prevention. Yet, little is known about the utility and value of information gained from cascade testing. This paper discusses ELSI encountered during the implementation of cascade testing in three countries with national healthcare systems: Switzerland, Korea, and Israel. Methods: A workshop presented at the 5th International ELSI Congress discussed implementation of cascade testing in the three countries based on exchange of data and experiences from the international CASCADE cohort. Results: Analyses focused on models of accessing genetic services (clinic-based versus population-based screening), and models of initiating cascade testing (patient-mediated dissemination versus provider-mediated dissemination of testing results to relatives). The legal framework of each country, organization of the healthcare system, and socio-cultural norms determined the utility and value of genetic information gained from cascade testing. Conclusion: The juxtaposition of individual versus public health interests generates significant ELSI controversies associated with cascade testing, which compromise access to genetic services and the utility and value of genetic information, despite national healthcare/universal coverage., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Barnoy, Dagan, Kim, Caiata-Zufferey, Katapodi, the CASCADE and the K-CASCADE Consortia.)

Despite the availability of clinical guidelines on the correct symptomatic management of fever in children, several studies have reported inaccurate knowledge about this symptom and inappropriate management behaviours among caregivers. There is evidence that caregivers' management of fever is largely influenced by unrealistic and unwarranted concerns about the potential harm that elevated body temperature can cause, a phenomenon commonly referred to as fever phobia. Research on fever phobia has predominantly focused on the role of fever misconceptions in triggering anxiety and impeding a proper fever management, in terms of both concept and operationalization, with little attention to the influence of the relationship between caregivers and the healthcare team. The aim of this pilot study was to explore and describe fever-related knowledge, experience and behaviour among a sample of caregivers, paediatricians and their medical assistants in the Canton of Ticino, Switzerland. We used a qualitative study design with semi-structured, one-to-one interviews with paediatricians employed in private healthcare facilities, their medical assistants and caregivers with at least one child between the ages of 0 and 3 years. We conducted individual interviews either in person or by phone, according to participants' preferences, between October 2020 and February 2021. We performed an inductive-deductive analysis of the transcripts to identify the most meaningful themes from participants' reports. The analysis of the transcripts yielded three main themes. The first theme refers to participants' awareness of the emotional component in managing the child's fever and the challenges this component presents. The second theme refers to the risk of overtreating when the child's right to be sick is not recognized and respected. The third theme refers to the importance of the relational component, showing how a solid therapeutic alliance with the healthcare team helps caregivers develop self-confidence in managing the child's fever. This study contributes to advance our understanding of fever phobia and to a better conceptualization and operationalization of this phenomenon., Conclusion: Our results point out to the importance of going beyond a knowledge gap paradigm and recognizing both the emotional and the relational component of fever phobia, the former being entrenched in latter, that is, the unique relationship caregivers establish with their child's paediatrician and the medical assistant., What Is Known: • Research on fever phobia has predominantly focused on the role of fever misconceptions in triggering anxiety and impeding a proper fever management, in terms of both concept and operationalization, with little attention to the relational component of this phenomenon., What Is New: • Our results point out to the importance of recognizing the emotional component of fever phobia, beyond its declarative and procedural knowledge dimensions. They also suggest that overtreating is not necessarily and not only the result of a phobia but also of a particular conception of health and the relational component of this phenomenon, which is entrenched in the unique relationship caregivers establish with their child's paediatrician and the medical assistant., (© 2022. The Author(s).)

Background: In health care research, patient-reported opinions are a critical element of personalized medicine and contribute to optimal health care delivery. The importance of integrating natural language processing (NLP) methods to extract patient-reported opinions has been gradually acknowledged over the past years. One form of NLP is sentiment analysis, which extracts and analyses information by detecting feelings (thoughts, emotions, attitudes, etc) behind words. Sentiment analysis has become particularly popular following the rise of digital interactions. However, NLP and sentiment analysis in the context of intrafamilial communication for genetic cancer risk is still unexplored. Due to privacy laws, intrafamilial communication is the main avenue to inform at-risk relatives about the pathogenic variant and the possibility of increased cancer risk., Objective: The study examined the role of sentiment in predicting openness of intrafamilial communication about genetic cancer risk associated with hereditary breast and ovarian cancer (HBOC) syndrome., Methods: We used narratives derived from 53 in-depth interviews with individuals from families that harbor pathogenic variants associated with HBOC: first, to quantify openness of communication about cancer risk, and second, to examine the role of sentiment in predicting openness of communication. The interviews were conducted between 2019 and 2021 in Switzerland and South Korea using the same interview guide. We used NLP to extract and quantify textual features to construct a handcrafted lexicon about interpersonal communication of genetic testing results and cancer risk associated with HBOC. Moreover, we examined the role of sentiment in predicting openness of communication using a stepwise linear regression model. To test model accuracy, we used a split-validation set. We measured the performance of the training and testing model using area under the curve, sensitivity, specificity, and root mean square error., Results: Higher "openness of communication" scores were associated with higher overall net sentiment score of the narrative, higher fear, being single, having nonacademic education, and higher informational support within the family. Our results demonstrate that NLP was highly effective in analyzing unstructured texts from individuals of different cultural and linguistic backgrounds and could also reliably predict a measure of "openness of communication" (area under the curve=0.72) in the context of genetic cancer risk associated with HBOC., Conclusions: Our study showed that NLP can facilitate assessment of openness of communication in individuals carrying a pathogenic variant associated with HBOC. Findings provided promising evidence that various features from narratives such as sentiment and fear are important predictors of interpersonal communication and self-disclosure in this context. Our approach is promising and can be expanded in the field of personalized medicine and technology-mediated communication., (©Vasiliki Baroutsou, Rodrigo Cerqueira Gonzalez Pena, Reka Schweighoffer, Maria Caiata-Zufferey, Sue Kim, Sharlene Hesse-Biber, Florina M Ciorba, Gerhard Lauer, Maria Katapodi, CASCADE Consortium. Originally published in JMIR Formative Research (https://formative.jmir.org), 19.01.2023.)

In January 2021, the Swiss government introduced the first COVID-19 vaccines and prioritized allocation to at-risk individuals and professionals working with them. Despite this opportunity, vaccine uptake among staff employed in retirement homes and institutes for people with disabilities was suboptimal. This study aimed to capture real-time decision-making about COVID-19 vaccine among staff employed in nursing homes and institutes for people with disabilities in Southern Switzerland. We conducted semi-structured phone-interviews with 25 staff employed in retirement homes and institutes for people with disabilities between February and May 2021, i.e., when participants had to decide whether they wanted to adhere to the priority vaccination programme. Among participants, 21 either signed up for the COVID-19 vaccination or were fully or partly vaccinated at the time of the interview. For most participants, the vaccination choice was a challenging process: information appeared to be lacking and conflicting; numerous moral principles were at stake and contradictory; the way vaccination was organized clashed with the health values to which respondents had been previously exposed; finally, the fear of discrimination for those who decided not to get vaccinated loomed over the vaccination choice. Participants decided for or against vaccination based on principles, traditions, emotions, and a reflexive assessment of the personal vs. collective benefit of the vaccination, the latter being the most common within the investigated sample. This study shows that deciding to get vaccinated against COVID-19 is a nuanced process and that individuals cannot simply be categorized as "novax" or "provax" based on their vaccination decision., Competing Interests: The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: L. Suzanne Suggs reports a relationship with MSD European Vaccines that includes: board membership., (© 2022 The Authors.)

Low uptake of genetic services among members of families with hereditary breast and ovarian cancer (HBOC) suggests limitations of proband-mediated communication of genetic risk. This study explored how genetic information proceeds from healthcare providers to probands and from probands to relatives, from the probands' perspectives. Using a grounded-theory approach, we analyzed narrative data collected with individual interviews and focus groups from a sample of 48 women identified as carriers of HBOC-associated pathogenic variants from three linguistic regions of Switzerland. The findings describe the "communication chain", confirming the difficulties of proband-mediated communication. Provider-proband communication is impacted by a three-level complexity in the way information about family communication is approached by providers, received by probands, and followed-up by the healthcare system. Probands' decisions regarding disclosure of genetic risk are governed by dynamic and often contradictory logics of action, interconnected with individual and family characteristics, eventually compelling probands to engage in an arbitrating process. The findings highlight the relevance of probands' involvement in the communication of genetic risk to relatives, suggesting the need to support them in navigating the complexity of family communication rather than replacing them in this process. Concrete actions at the clinical and health system levels are needed to improve proband-mediated communication.

Cascade screening for Tier 1 cancer genetic conditions is a significant public health intervention because it identifies untested relatives of individuals known to carry pathogenic variants associated with hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS). The Swiss CASCADE is a family-based, open-ended cohort, including carriers of HBOC- and LS-associated pathogenic variants and their relatives. This paper describes rates of cascade screening in relatives from HBOC- and LS- harboring families, examines carriers' preferences for communication of testing results, and describes theory-based predictors of intention to invite relatives to a cascade screening program. Information has been provided by 304 index cases and 115 relatives recruited from September 2017 to December 2021. On average, 10 relatives per index case were potentially eligible for cascade screening. Approximately 65% of respondents wanted to invite relatives to the cohort, and approximately 50% indicated a preference for patient-mediated communication of testing results, possibly with the assistance of digital technology. Intention to invite relatives was higher for first- compared to second- and third-degree relatives, but was not different between syndromes or based on relatives' gender. The family environment and carrying pathogenic variants predicts intention to invite relatives. Information helps optimize delivery of tailored genetic services.

Examining genetic literacy in families concerned with hereditary breast and ovarian cancer (HBOC) helps understand how genetic information is passed on from individuals who had genetic counseling to their at-risk relatives. This cross-study comparison explored genetic literacy both at the individual and the family level using data collected from three sequential studies conducted in the U.S. and Switzerland over ≥10 years. Participants were primarily females, at-risk or confirmed carriers of HBOC-associated pathogenic variants, who had genetic counselling, and ≥1 of their relatives who did not. Fifteen items assessed genetic literacy. Among 1933 individuals from 518 families, 38.5% had genetic counselling and 61.5% did not. Although genetic literacy was higher among participants who had counselling, some risk factors were poorly understood. At the individual level, genetic literacy was associated with having counselling, ≤5 years ago, higher education, and family history of cancer. At the family level, genetic literacy was associated with having counselling, higher education, and a cancer diagnosis. The findings suggest that specific genetic information should be emphasized during consultations, and that at-risk relatives feel less informed about inherited cancer risk, even if information is shared within families. There is a need to increase access to genetic information among at-risk individuals.

Background: Crisis Resolution and Home Treatment (CRHT) teams represent a community-based mental health service offering a valid alternative to hospitalization. CRHT teams have been widely implemented in various mental health systems worldwide, and their goal is to provide care for people with severe acute mental disorders who would be considered for admission to acute psychiatric wards. The evaluation of several home-treatment experiences shows promising results; however, it remains unclear which specific elements and characteristics of CRHT are more effective and acceptable., Objective: This study aims to assess the acceptability, effectiveness, and cost-effectiveness of a new CRHT intervention in Ticino, Southern Switzerland., Methods: This study includes an interventional, nonrandomized, quasi-experimental study combined with a qualitative study and an economic evaluation to be conducted over a 48-month period. The quasi-experimental evaluation involves two groups: patients in the northern area of the region who were offered the CRHT service (ie, intervention group) and patients in the southern area of the region who received care as usual (ie, control group). Individual interviews will be conducted with patients receiving the home treatment intervention and their family members. CRHT members will also be asked to participate in a focus group. The economic evaluation will include a cost-effectiveness analysis., Results: The project is funded by the Swiss National Science Foundation as part of the National Research Program NRP74 for a period of 48 months starting from January 2017. As of October 2021, data for the nonrandomized, quasi-experimental study and the qualitative study have been collected, and the results are expected to be published by the end of the year. Data are currently being collected for the economic evaluation., Conclusions: Compared to other Swiss CRHT experiences, the CRHT intervention in Ticino represents a unique case, as the introduction of the service is backed by the closing of one of its acute wards. The proposed study will address several areas where there are evidence gaps or contradictory findings relating to the home treatment of acute mental crisis. Findings from this study will allow local services to improve their effectiveness in a challenging domain of public health and contribute to improving access to more effective care for people with severe mental disorders., Trial Registration: ISRCTN registry ISRCTN38472626; https://www.isrctn.com/ISRCTN38472626., International Registered Report Identifier (irrid): DERR1-10.2196/28191., (©Sara Levati, Zefiro Mellacqua, Maria Caiata-Zufferey, Emiliano Soldini, Emiliano Albanese, Maddalena Alippi, Emilio Bolla, Raffaella Ada Colombo, Severino Cordasco, Wolfram Kawohl, Giuseppina Larghi, Angela Lisi, Mario Lucchini, Simona Rossa, Rafael Traber, Luca Crivelli. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 09.11.2021.)

Background: In hereditary breast and ovarian cancer (HBOC), family communication of genetic test results is essential for cascade genetic screening, that is, identifying and testing blood relatives of known mutation carriers to determine whether they also carry the pathogenic variant, and to propose preventive and clinical management options. However, up to 50% of blood relatives are unaware of relevant genetic information, suggesting that potential benefits of genetic testing are not communicated effectively within family networks. Technology can facilitate communication and genetic education within HBOC families., Objective: The aims of this study are to develop the K-CASCADE (Korean-Cancer Predisposition Cascade Genetic Testing) cohort in Korea by expanding an infrastructure developed by the CASCADE (Cancer Predisposition Cascade Genetic Testing) Consortium in Switzerland; develop a digital health intervention to support the communication of cancer predisposition for Swiss and Korean HBOC families, based on linguistic and cultural adaptation of the Family Gene Toolkit; evaluate its efficacy on primary (family communication of genetic results and cascade testing) and secondary (psychological distress, genetic literacy, active coping, and decision making) outcomes; and explore its translatability using the reach, effectiveness, adoption, implementation, and maintenance framework., Methods: The digital health intervention will be available in French, German, Italian, Korean, and English and can be accessed via the web, mobile phone, or tablet (ie, device-agnostic). K-CASCADE cohort of Korean HBOC mutation carriers and relatives will be based on the CASCADE infrastructure. Narrative data collected through individual interviews or mini focus groups from 20 to 24 HBOC family members per linguistic region and 6-10 health care providers involved in genetic services will identify the local cultures and context, and inform the content of the tailored messages. The efficacy of the digital health intervention against a comparison website will be assessed in a randomized trial with 104 HBOC mutation carriers (52 in each study arm). The translatability of the digital health intervention will be assessed using survey data collected from HBOC families and health care providers., Results: Funding was received in October 2019. It is projected that data collection will be completed by January 2023 and results will be published in fall 2023., Conclusions: This study addresses the continuum of translational research, from developing an international research infrastructure and adapting an existing digital health intervention to testing its efficacy in a randomized controlled trial and exploring its translatability using an established framework. Adapting existing interventions, rather than developing new ones, takes advantage of previous valid experiences without duplicating efforts. Culturally sensitive web-based interventions that enhance family communication and understanding of genetic cancer risk are timely. This collaboration creates a research infrastructure between Switzerland and Korea that can be scaled up to cover other hereditary cancer syndromes., Trial Registration: ClinicalTrials.gov NCT04214210; https://clinicaltrials.gov/ct2/show/NCT04214210 and CRiS KCT0005643; https://cris.nih.go.kr/cris/., International Registered Report Identifier (irrid): PRR1-10.2196/26264., (©Sue Kim, Monica Aceti, Vasiliki Baroutsou, Nicole Bürki, Maria Caiata-Zufferey, Marco Cattaneo, Pierre O Chappuis, Florina M Ciorba, Rossella Graffeo-Galbiati, Viola Heinzelmann-Schwarz, Joon Jeong, MiSook M Jung, Sung-Won Kim, Jisun Kim, Myong Cheol Lim, Chang Ming, Christian Monnerat, Hyung Seok Park, Sang Hyung Park, Carla A Pedrazzani, Manuela Rabaglio, Jai Min Ryu, Ramon Saccilotto, Simon Wieser, Ursina Zürrer-Härdi, Maria C Katapodi. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 11.06.2021.)

BRCA1/2 genetic testing offers tremendous opportunities for prevention, diagnosis and treatment of breast and ovarian cancer. Women acquire valuable information that can help them to make informed decisions about their health. However, knowing one's susceptibility to developing cancer may be burdensome for several women, as this risk needs to be managed over time through a continuous dialogue with multiple healthcare professionals. We explored how communication between physicians and unaffected women carrying BRCA1/2 germline pathogenic variants was experienced by women in relation to their genetic risk. Data came from qualitative interviews conducted in Switzerland with 32 unaffected women carrying BRCA1/2 pathogenic variants and aware of their genetic status for at least 3 years. We identified three different types of message as conveyed by physicians to women: (1) a normative message, (2) an over-empowering message, and (3) a minimizing message. On one hand, we found that women are exposed to contradictory messages, often simultaneously, in their interactions with healthcare professionals during their post-genetic testing journey. On the other hand, women's reports highlighted the absence of shared decision-making in such interactions. The combination of these two findings resulted in a strong sense of disorientation, frustration, and powerlessness among participants. Healthcare professionals interacting with high cancer risk women are urged to align in favor of a both concerted and shared decision-making approach when discussing options for managing genetic risk., Competing Interests: The authors have declared that no competing interests exist.

Background: An international workshop on cancer predisposition cascade genetic screening for hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) took place in Switzerland, with leading researchers and clinicians in cascade screening and hereditary cancer from different disciplines. The purpose of the workshop was to enhance the implementation of cascade genetic screening in Switzerland. Participants discussed the challenges and opportunities associated with cascade screening for HBOC and LS in Switzerland (CASCADE study); family implications and the need for family-based interventions; the need to evaluate the cost-effectiveness of cascade genetic screening; and interprofessional collaboration needed to lead this initiative., Methods: The workshop aims were achieved through exchange of data and experiences from successful cascade screening programs in the Netherlands, Australia, and the state of Ohio, USA; Swiss-based studies and scientific experience that support cancer cascade screening in Switzerland; programs of research in psychosocial oncology and family-based studies; data from previous cost-effectiveness analyses of cascade genetic screening in the Netherlands and in Australia; and organizational experience from a large interprofessional collaborative. Scientific presentations were recorded and discussions were synthesized to present the workshop findings., Results: The key elements of successful implementation of cascade genetic screening are a supportive network of stakeholders and connection to complementary initiatives; sample size and recruitment of relatives; centralized organization of services; data-based cost-effectiveness analyses; transparent organization of the initiative; and continuous funding., Conclusions: This paper describes the processes and key findings of an international workshop on cancer predisposition cascade screening, which will guide the CASCADE study in Switzerland., (© 2019 S. Karger AG, Basel.)

Background: Breast, colorectal, ovarian, and endometrial cancers constitute approximately 30% of newly diagnosed cancer cases in Switzerland, affecting more than 12,000 individuals annually. Hundreds of these patients are likely to carry germline pathogenic variants associated with hereditary breast ovarian cancer (HBOC) or Lynch syndrome (LS). Genetic services (counseling and testing) for hereditary susceptibility to cancer can prevent many cancer diagnoses and deaths through early identification and risk management., Objective: Cascade screening is the systematic identification and testing of relatives of a known mutation carrier. It determines whether asymptomatic relatives also carry the known variant, needing management options to reduce future harmful outcomes. Specific aims of the CASCADE study are to (1) survey index cases with HBOC or LS from clinic-based genetic testing records and determine their current cancer status and surveillance practices, needs for coordination of medical care, psychosocial needs, patient-provider and patient-family communication, quality of life, and willingness to serve as advocates for cancer genetic services to blood relatives, (2) survey first- and second-degree relatives and first-cousins identified from pedigrees or family history records of HBOC and LS index cases and determine their current cancer and mutation status, cancer surveillance practices, needs for coordination of medical care, barriers and facilitators to using cancer genetic services, psychosocial needs, patient-provider and patient-family communication, quality of life, and willingness to participate in a study designed to increase use of cancer genetic services, and (3) explore the influence of patient-provider communication about genetic cancer risk on patient-family communication and the acceptability of a family-based communication, coping, and decision support intervention with focus group(s) of mutation carriers and relatives., Methods: CASCADE is a longitudinal study using surveys (online or paper/pencil) and focus groups, designed to elicit factors that enhance cascade genetic testing for HBOC and LS in Switzerland. Repeated observations are the optimal way for assessing these outcomes. Focus groups will examine barriers in patient-provider and patient-family communication, and the acceptability of a family-based communication, coping, and decision-support intervention. The survey will be developed in English, translated into three languages (German, French, and Italian), and back-translated into English, except for scales with validated versions in these languages., Results: Descriptive analyses will include calculating means, standard deviations, frequencies, and percentages of variables and participant descriptors. Bivariate analyses (Pearson correlations, chi-square test for differences in proportions, and t test for differences in means) will assess associations between demographics and clinical characteristics. Regression analyses will incorporate generalized estimating equations for pairing index cases with their relatives and explore whether predictors are in direct, mediating, or moderating relationship to an outcome. Focus group data will be transcribed verbatim and analyzed for common themes., Conclusions: Robust evidence from basic science and descriptive population-based studies in Switzerland support the necessity of cascade screening for genetic predisposition to HBOC and LS. CASCADE is designed to address translation of this knowledge into public health interventions., Trial Registration: ClinicalTrials.gov NCT03124212; https://clinicaltrials.gov/ct2/show/NCT03124212 (Archived by WebCite at http://www.webcitation.org/6tKZnNDBt)., (©Maria C Katapodi, Valeria Viassolo, Maria Caiata-Zufferey, Christos Nikolaidis, Rosmarie Bührer-Landolt, Nicole Buerki, Rossella Graffeo, Henrik Csaba Horváth, Christian Kurzeder, Manuela Rabaglio, Michael Scharfe, Corinne Urech, Tobias E Erlanger, Nicole Probst-Hensch, Karl Heinimann, Viola Heinzelmann-Schwarz, Olivia Pagani, Pierre O. Chappuis. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 20.09.2017.)

Purpose: Women carrying BRCA1/BRCA2 germ-line mutations have an increased risk of developing breast/ovarian cancer. To minimize this risk, international guidelines recommend lifelong surveillance and preventive measures. This study explores the challenges that unaffected women genetically predisposed to breast/ovarian cancer face in managing their risk over time and the psychosocial processes behind these challenges., Methods: Between 2011 and 2013, biographical qualitative interviews were conducted in Switzerland with 32 unaffected French- and Italian-speaking women carrying BRCA1/BRCA2 mutations. Their mutation status had been known for at least 3 years (mean, 6 years). Data were analyzed through constant comparative analysis using software for qualitative analysis., Results: From the time these women received their positive genetic test results, they were encouraged to follow medical guidelines. Meanwhile, their adherence to these guidelines was constantly questioned by their social and medical environments. As a result of these contradictory pressures, BRCA1/BRCA2 mutation carriers experienced a sense of disorientation about the most appropriate way of dealing with genetic risk., Conclusion: Given the contradictory attitudes of health-care professionals in caring for unaffected BRCA1/BRCA2 mutation carriers, there is an urgent need to educate physicians in dealing with genetically at-risk women and to promote a shared representation of this condition among them.Genet Med 17 9, 726-732.

Background: There is strong empirical evidence that the support that chronic patients receive from their environment is fundamental for the way they cope with physical and psychological suffering. Nevertheless, in the case of rheumatoid arthritis (RA), providing the appropriate social support is still a challenge, and such support has often proven to be elusive and unreliable in helping patients to manage the disease., Objectives: To explore whether and how social support for RA patients can be provided online, and to assess the conditions under which such support is effective. An online support tool was designed to provide patients with both tailored information and opportunities to interact online with health professionals and fellow sufferers. The general purpose was to identify where the support provided did - or did not - help patients, and to judge whether the determinants of success lay more within patients - their engagement and willingness to participate - or within the design of the website itself., Methods: The present study reports qualitative interviews with 19 users of the tool. A more specific purpose was to elaborate qualitatively on results from a quantitative survey of users, which indicated that any positive impact was confined to practical matters of pain management rather than extending to more fundamental psychological outcomes such as acceptance., Results and Conclusions: Overall, online learning and interaction can do much to help patients with the everyday stresses of their disease; however, its potential for more durable positive impact depends on various individual characteristics such as personality traits, existing social networks, and the severity and longevity of the disease.

For the last 20 years, genetic tests have allowed unaffected women to determine whether they are predisposed to developing breast/ovarian cancer due to BRCA1/2 gene mutations. In the event of adverse results, women receive a specific label associated with a set of medical recommendations: the genetically at-risk status. This qualitative study adopted a life-course perspective to understand the impact of this status on women's agency. Following a grounded theory design, retrospective biographical interviews were conducted in Switzerland between 2011 and 2013 with 32 unaffected women at risk of developing genetic breast/ovarian cancer and aware of their predisposition for at least three years. The results show that the genetically at-risk status conveys an invitation to transform health into a project, i.e., into a set of planned activities realized in collaboration with the medical system in order to reduce the risk of developing cancer. This health project shapes women's agency in three ways: it enhances, constrains and questions it, thus creating a sense of disorientation about what is considered rational and appropriate in terms of genetic risk management. Based on these findings, the paper concludes by stressing the paradoxes of the genetically at-risk status and the limits of the medical system in managing women designated with it. The paper also suggests that because of the disorientation intrinsic to their situation, genetically at-risk women have to reflexively construct their own health project from a range of available options in ways that are coherent and viable for themselves and their significant others. This process of reflexive construction may be called legitimation., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

A good collaboration between health professionals is considered to have benefits for patients, healthcare staff, and organizations. Nevertheless, effective interprofessional collaboration is difficult to achieve. This is particularly true for collaboration between Medical Residents (MRs) and the immediate colleagues they interact with, as Senior Doctors (SDs) and Head Nurses (HNs). Role understanding is one of the factors that may explain difficulties in interprofessional collaboration. Based on this hypothesis, this paper focuses on MRs' role, devoting particular attention to differences in role perception between MRs, SDs, and HNs, and to their consequences for interprofessional collaboration. An exploratory qualitative study inspired by Grounded Theory was conducted in April 2009 in a small peripheral and non-university hospital in Switzerland. Data came from two focus groups with MRs (13), one with SDs (8), and one with HNs (7), and were analyzed using the constant comparative method. Findings show that the expected and the enacted role of MR are perceived differently by SDs, HNs and MRs themselves. To face the inconsistencies within MR's role, the three professional groups develop some adjustments that eventually prove to be paradoxical: on one side, they make collaboration possible and preserve the functioning of the ward, while on the other side they lead to mutual misunderstanding and discontent. These findings suggest that there is an urgent need of defining the role of MRs, of delimiting its boundaries and thereby distinguishing it from other health workers, and eventually of promoting a shared representation of it.

Background: Rheumatoid arthritis (RA) is a chronic, painful disease with many injurious psychological effects. Acceptance is an important component of pain management and is associated with improved quality of life, and lower levels of pain and depression. While studies have begun to identify the stages of acceptance, little is known about factors influencing the ease and speed with which patients pass through these stages., Objective: To explore the main stages through which RA patients pass and the strategies they adopt to learn to live with the pain, and to identify factors shaping patients' capacities to achieve acceptance., Methods: A qualitative study involving 20 semistructured interviews with RA patients in the Italian-speaking region of Switzerland was conducted. Analysis of the data followed the precepts of grounded theory., Results: Although the present study revealed that acceptance is not a smooth or linear process, five main stages in patients' struggles to accommodate the newly imposed limitations were, nonetheless, identified: naming the illness; realizing the illness; resisting the illness; 'hitting the bottom'; and integrating the illness. Diagnosis proved to be an especially tortuous stage in the case of RA, and the effects of delayed diagnosis continued to be felt during the subsequent stages. Patients' understanding of the notion of acceptance and the strategies that they used to achieve it were also explored., Conclusions: Diagnosis of RA is notoriously difficult. Beyond the clinical difficulties, structural reasons for late diagnosis (symptoms being neglected by patients and medical professionals) were identifed. Delayed diagnosis hindered the acceptance process throughout, and led to more resistant behaviour and to a struggle to achieve the optimal formula for acceptance - accepting the losses of prepain life while still pursuing personal goals.

Acceptance is an important component of pain management, being associated with improved quality of life and lower levels of pain and depression. In enabling patients with chronic diseases to accept unpleasant consequences and to establish a new way of living, the support they receive from their social environment may play a decisive role. In this article, we identify the key sources and types of social support that are relevant for rheumatoid arthritis (RA) patients, and explore when and how those sources are important across the different stages of the acceptance process. We conducted a qualitative study involving 20 semi-structured interviews with RA patients in Switzerland. Analysis of the data followed the precepts of grounded theory. We found that, amid the complexity and variety of patients' struggles for acceptance, there were some common experiences or 'key moments' in which social support played an important role. While three sources of support - family, physicians and the external social context - are fundamental for RA patients, all three may inhibit as well as encourage acceptance, due to the invisible and unpredictable character of the disease. There is a pervasive risk either of underestimating patients' suffering or of over-supporting, both of which prevent patients accepting the disease and developing a new 'normal' life. We conclude that sources of social support need to find a middle way between scepticism and solicitousness.

This article describes the strategies used by physicians to interact with Internet-informed patients, alongside illustrating the motives underlying such strategies. Semistructured interviews were conducted with a sample of 17 physicians from primary care and medical specialist practices in the Italian part of Switzerland. The sample was diversified in terms of specialty, age, and gender. Data collection and analysis were driven by grounded theory and supported by a computer-assisted qualitative analysis program. A typology of four communicative strategies has been outlined. The adoption of these strategies is shaped by physicians' general attitude toward Internet-informed patients, based on their conception of medical information for lay people through the Internet. However, this general attitude is mediated by doctors' interpretation of the specific communicative context, that is, their appraisal of three aspects: the patient's health literacy, the relevance of the online information to be discussed, and their own communicative efficacy. At the end, the process of interpretation underlying the strategies is discussed to expand on it and to identify implications for practice and research.

A growing number of patients search for medical information on the Internet. Understanding how they use the Internet is important, as this might impact their health, patient-practitioner roles, and general health care provision. In this article, we illustrate the motives of online health information seeking in the context of the doctor-patient relationship in Switzerland. We conducted semistructured interviews with patients who searched for health information online before or after a medical consultation. Findings suggest that patients searched for health information online to achieve the goals of preparing for the consultation, complementing it, validating it, and/or challenging its outcome. The initial motivations for online health information seeking are identified in the needs for acknowledgment, reduction of uncertainty, and perspective. Searching health information online was also encouraged by personal and contextual factors, that is, a person's sense of self-responsibility and the opportunity to use the Internet. Based on these results, we argue that online health information seeking is less concerned with what happens during the consultation than with what happens before or after it, in the sociocultural context.