Patient-reported experiences of cancer care related to the COVID-19 pandemic in Switzerland.

PURPOSE: This study aims to describe the experience of Swiss oncological patients during the COVID-19 pandemic. METHODS: A national multi-center study including five hospitals covering the three main language regions of Switzerland was conducted between March and July 2021. Patients with melanoma, breast, lung, or colon cancer receiving active systemic anti-cancer treatment at the time of the COVID-19 pandemic were included. We conducted semi-structured telephone or onsite interviews alongside the administration of distress and resilience-validated questionnaires. Thematic analysis was performed for the qualitative data and descriptive statistics for the quantitative data. RESULTS: Sixty-two cancer patients with a mean age of 61 (SD=14) (58% female) were interviewed. Based on the interviews, we identified that the experience of having cancer during the COVID-19 pandemic was related to five dimensions: psychological, social, support, healthcare, and vaccination. Three themes transverse the five dimensions: (a) needs, (b) positive changes, and (c) phases of the pandemic. In general, patients did not experience delays or disruptions in their cancer treatment nor felt additionally burdened by the pandemic. Lockdown and isolation were reported as mixed experiences (positive and negative), and access to vaccination reassured patients against the risk of infection and instilled hope to return to normalcy. Additionally, we found low distress levels (M=2.9; SD=2.5) and high resilience scores (M=7; SD=1.3) in these patients. CONCLUSION: Swiss patients with cancer did not express major needs or disruptions in their care during this period of the COVID-19 pandemic. Results identify the mixed experiences of patients and highlight the high resilience levels.

Nursing management of fatigue in cancer patients and suggestions for clinical practice: a mixed methods study.

BACKGROUND: Fatigue is a complex and frequent symptom in cancer patients, influencing their quality of life, but it is still underestimated and undertreated in clinical practice. The aims of this study were to detect the presence of fatigue in cancer patients, describe how patients and nurses perceived it and how nurses managed fatigue. METHODS: This is a mixed methods study. Data were collected in two oncological wards using the Brief Fatigue Inventory (BFI), an ad hoc questionnaire, patient interviews, focus groups with nurses and the review of nursing records. Interviews and focus groups were analysed through thematic analysis. We used SPSS 22.0 for quantitative data and Nvivo 10 for qualitative data analysis. RESULTS: A total of 71 questionnaires were analysed (39 males, mean age 65.7 years). Fatigue was reported 5 times (7%) in nursing records, while in 17 cases (23.9%) problems associated to it were reported. Twelve patients were interviewed. Five themes were identified: feeling powerless and aggressive, my strategies or what helps me, feeling reassured by the presence of family members, feeling reassured by nurses' gestures, and being informed. Three themes were identified through the focus groups: objectivity and subjectivity in the assessment of fatigue, nurses' contribution to the multidisciplinary management of fatigue, and difficulty in evaluating outcomes. CONCLUSIONS: The approach to the management of fatigue was unstructured. Patients were satisfied with the care they received but needed more information and specific interventions. Useful aspects were identified that could be used to change health professionals' approach towards the management of fatigue.

[Pain management in patients of a Swiss Institute of Oncology and the role of nurses: from programs to reality]. / La gestione del dolore nei pazienti di un Istituto Oncologico Svizzero e il ruolo degli infermieri: dai programmi alla realtà.

INTRODUCTION: In 2004, the Oncology Institute of Southern Switzerland (IOSI) started a program to improve cancer pain treatment, through training of health professionals and the introduction of monitoring tools . AIM: The aim is to evaluate patient relief from pain (effective pain control), with attention to nursing role (pain assessment, monitoring and documentation). METHOD: Retrospective study. The health records of patients admitted in the last three months of 2010 were consulted to evaluate how pain was assessed and managed. RESULTS: Out of 177 patients admitted, 93 (52.6 %) experienced pain during hospitalization and 85 were included in the analysis . Sixty-two out of 85 (72.9 %) received drugs in reserve > = 2 days. They had pain from 2 to 28 days (median 4). For 56/62 patients ( 90.3 %) analgesic therapy was changed one or more times and 40 of them ( 63.4 % ) received strong opioids during hospitalization . In 8/62 cases pain wasn't documented, and overall, in 25/85 (29.4 %) intensity or any other feature weren't documented. CONCLUSIONS: At IOSI there is a good pharmacological control of pain. Analgesics are prescribed upon entry and are modulated according to patient needs, even with wide administration of opioids. The issue to improve is pain assessment and monitoring by nurses, whose role is mainly oriented to contribute to the pharmacological management of this symptom.

Modes of responsibility in disclosing cancer genetic test results to relatives: An analysis of Swiss and Korean narrative data.

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).

[To know to change: the nurses of the Oncology Institute of Southern Switzerland (IOSI) and their relationship with the Evidence Based Practise (EBP) and Nursing Research]. / Conoscere per cambiare: gli infermieri dell'Istituto Oncologico della Svizzera Italiana (IOSI) e il loro rapporto con l'Evidence Based Practice e la ricerca infermieristica.

To promote the development of a culture and a professional practice based on "evidence of effectiveness", the IOSI Nursing Officer instituted a specific Unit which decided to establish its own lines of action based on the results of an internal investigation conducted among nurses employed within IOSI, with reference to the model of action research. In July 2010, a semi-structured questionnaire self compiled was sent to all nurses to find out their opinions and experiences on EBP and nursing research, to recognize their proposals, and willingness to be part of an internal network. 63 out of 98 questionnaire were filled in. Several nurses have knowledge and experience in these fields, but change their professional behavior especially under pressure from the external environment, rather than by autonomous choice. They consider EBP substantially useful, but difficult to implement especially without their direct involvement. Two third of the sample have felt the need of EBP during their professional activity and there is a general willingness to develop nursing research (56%) and/or play an active role of "referent" on these issues within own Unit (35%). The survey showed that at IOSI there is a favorable substrate for EBP and nursing research (for basic knowledge and availability). The data collected have served to define internal lines of action in a narrow relationship with the clinical areas, according to the model of action research. It is a process that requires vision, coordinated efforts, perseverance and time.

[Breast cancer: end of treatment issues and set up of nursing follow up in the Italian Switzerland Breast Unit]. / Problematiche delle donne con tumore al seno e attivazione di un programma di follow-up infermieristico presso il Centro di Senologia della Svizzera Italiana.

It's widely recognized the important role that nurses can have in identifying and managing problems of various kinds resulting from the illness and treatment in survivor cancer patients, so that clinical nursing follow-up programs for cancer patients are now widely diffused internationally. The aim of the following study is the detection of the main physical, emotional, social-familial problems of women with breast cancer followed by the Italian Switzerland Breast Unit, after the end of treatment in order to better target the activation of a nursing follow-up program. This is a descriptive study. Data were collected through a questionnaire mailed to all patients who underwent surgery in the Breast Unit from 2005 to 2009 for a total of 527 patients. The statistical analysis of data was carried out on a total of 202 patients. Fatigue is the physical problem most highlighted by the sample of women (52%), followed by bone pain and / or muscle pain (45.5%) and hot flushes (44.1%). On an emotional level, fear and worry are reported by 40.1% of women, followed by sadness reported by 31.3% of women. Regarding the socio-familial aspect, one of 5 women shows working difficulties (21.2%). Statistically significant correlations are highlighted between some problems and some contextual variables (age, type of treatment, time from the end of treatment). The study has allowed to characterize this population in the specific context and to structure a nursing follow-up program which is active since January 2012.

ACCESS: an empirically-based framework developed by the International Nursing CASCADE Consortium to address genomic disparities through the nursing workforce.

Introduction: Efforts are needed across disciplines to close disparities in genomic healthcare. Nurses are the most numerous trained healthcare professionals worldwide and can play a key role in addressing disparities across the continuum of care. ACCESS is an empirically-based theoretical framework to guide clinical practice in order to ameliorate genomic disparities. Methods: The framework was developed by the International Nursing CASCADE Consortium based on evidence collected between 2005 and 2023 from individuals and families of various ethnic backgrounds, with diverse hereditary conditions, and in different healthcare systems, i.e., Israel, Korea, Switzerland, and several U.S. States. The components of the framework were validated against published scientific literature. Results: ACCESS stands for Advocating, Coping, Communication, cascadE Screening, and Surveillance. Each component is demonstrated in concrete examples of clinical practice within the scope of the nursing profession related to genomic healthcare. Key outcomes include advocacy, active coping, intrafamilial communication, cascade screening, and lifelong surveillance. Advocacy entails timely identification of at-risk individuals, facilitating referrals to specialized services, and informed decision-making for testing. Active coping enhances lifelong adaptation and management of disease risk. Effective intrafamilial communication of predisposition to hereditary disease supports cascade testing of unaffected at-risk relatives. Lifelong surveillance is essential for identifying recurrence, changes in health status, and disease trajectory for life-threatening and for life-altering conditions. Discussion: ACCESS provides a standardized, systematic, situational, and unifying guide to practice and is applicable for nursing and for other healthcare professions. When appropriately enacted it will contribute towards equitable access to genomic resources and services.

Music in the life of nursing home residents.

BACKGROUND: Making and listening to music can be beneficial for older adults. However, little is known about how and to what extent those who live in nursing homes have access to music and the functions that music plays in their lives. METHODS: This study involved 20 residents who volunteered from six nursing homes in Switzerland. Each resident was interviewed, and the data were analysed using thematic analysis. RESULTS: For many residents, their access to music decreased after moving into their nursing home, and many of them wanted more musical experiences in their daily lives, both with music from their pasts and with unfamiliar repertoire. Music was strongly connected to their sense of identity and elicited positive emotions. Musical activities offered by the nursing homes also stimulated social interactions. CONCLUSIONS: Music plays a central role in facilitating positive wellbeing and quality of life in nursing homes.

The Communication Chain of Genetic Risk: Analyses of Narrative Data Exploring Proband-Provider and Proband-Family Communication in Hereditary Breast and Ovarian Cancer.

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.

Patients' and Nurses' Perceptions of the Effectiveness of an Oral Cancer Agent Education Process: A Mixed-Methods Study.

BACKGROUND: The increase in the use of oral cancer drugs implies that nurses take on new roles for which education and support to patients and family members become fundamental for promoting therapeutic adherence. OBJECTIVE: To describe the patients' and nurses' perceptions on the effectiveness of the educational process in oral cancer treatment. METHODS: A mixed method with a convergent design was used. Data were collected using a questionnaire (structured according to the Multinational Association of Supportive Care in Cancer Teaching Tool for Patients Receiving Oral Agents for Cancer guidelines) and semistructured interviews with patients. Focus groups were used with the nurses. Quantitative data were analyzed with SPSS 22.0 (IBM SPSS 22.0, Armonk, New York). Qualitative data were analyzed using semantic analysis. RESULTS: One hundred forty-two questionnaires were analyzed. Patients were usually informed by physicians and nurses (81%), alone (33%) or in the presence of an informal carer (29.6%). Language comprehension was high, with a significant difference between those 70 years or older (P = .04) and those younger than 70 years. From the interviews (n = 16), 3 themes were identified: emotions during communication, feeling reassured by the presence of family members and nurses, feeling welcomed and an active part of the educational process. Three themes were identified from the focus groups (n = 4): prerequisites for an effective therapeutic education, nurses' skills, and educational process barriers. CONCLUSIONS: Overall, patients were satisfied with the education received. They perceived nurses as people who can help them understand the information they have received and manage their treatment and adverse effects. IMPLICATIONS FOR PRACTICE: This study highlighted some important points for an effective educational process: having a nurse to refer to, technical relationship competences, joint visits with physicians, and being available by phone.

Genetic Literacy and Communication of Genetic Information in Families Concerned with Hereditary Breast and Ovarian Cancer: A Cross-Study Comparison in Two Countries and within a Timeframe of More Than 10 Years.

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.

Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study.

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.

Art for Ages: The Effects of Group Music Making on the Wellbeing of Nursing Home Residents.

In many countries, life expectancy has increased considerably in past years, and the importance of finding ways to ensure good levels of wellbeing through aging has become more important than ever. Arts based interventions are promising in this respect, and the literature suggests that musical activities can reduce isolation and anxiety and foster feelings of achievement and self-confidence. The present study examined the effects of group music making programs on the health and wellbeing of nursing home residents in Southern Switzerland. A team of professional and student musicians delivered 10 weekly music sessions in four nursing homes, focusing on singing, rhythm-based activities with percussion instruments, and listening to short, live performances. 22 participants (16 women and 6 men, aged 72-95 years, mean 83.6, SD ± 6.9) were recruited to take part in the study and were interviewed after the last music session. The data were analyzed with thematic analysis to investigate how residents experienced group music making and its effects. The findings show that the music programs were beneficial for residents' wellbeing. Music plays an important role in their lives, both in their pasts and presently, and being involved in musical activities offers engagement and novelty in daily life, providing learning opportunities and facilitating interpersonal relationships. Moreover, these results were due to interactions with the musicians involved. Residents particularly appreciated the opportunity to listen to live performances as part of the sessions. This study suggests that nursing home residents value music and that music based interventions play an important and direct role in enhancing their wellbeing.

Challenges and Opportunities for Cancer Predisposition Cascade Screening for Hereditary Breast and Ovarian Cancer and Lynch Syndrome in Switzerland: Findings from an International Workshop.

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.

[The implementation of recommendations in daily practice: the experience of the nurses of the Oncology institute of Southern Switzerland]. / L'applicazione delle raccomandazioni nella pratica quotidiana: l'esperienza degli infermieri dell'Istituto Oncologico della Svizzera Italiana.

INTRODUCTION: In spite of the wide spread and availability of the clinical practice guidelines, several problems limit and influence their implementation. Several studies explored how a protocol based care may influence nurses' decision making processes, while only few studies explored how it is used in everyday practice. AIM: This paper explores how the nurses of the Oncology Institute of Southern Switzerland implement the care protocols and problems encountered. METHODS: Information on the frequency of use of protocols in the previous month, the need and reasons for modifications were collected with a semistructured questionnaire. Nurses were asked to briefly describe the situations that required a change of the protocol. The nurses'perceptions on the use of protocols in clinical practice were further explored with a focus group. RESULTS: Of the 47 questionnaires distributed 38 were returned and 18 cases briefly described. In general, the protocols were widely used but at the same time, frequently adapted mainly by expert nurses (although 19/39 nursed declared that protocols were never modified). Reasons for modifications were mainly related to the clinical situation of the patient, to his/her values and preferences. CONCLUSIONS: Instruments that standardize patients' care are frequently modified to account for patients preferences and characteristics. The nurses acknowledged the need of flexible instruments (and not hard rules) to guide their professional practice.