Awareness, attitudes, and beliefs about palliative care: Results from a representative survey of the Italian-speaking Swiss population.

OBJECTIVE: To understand the knowledge and awareness of palliative care in the Italian-speaking Swiss general population, describing main misconceptions or false beliefs and their relationship with attitudes towards palliative care. METHODS: Cross-sectional representative population survey (N = 313). RESULTS: We observed a high awareness of «palliative care,¼ although it is mainly associated with pain management and the very last days of life. While false beliefs are relatively rare, there is low awareness of goals, targets, and services offered by palliative care. Overall the Italian-speaking Swiss population has a good predisposition towards palliative care, but negative attitudes are more common among those who lack knowledge. More than one-third of respondents are interested in receiving more information about palliative care, especially from their healthcare providers or through dedicated information points. CONCLUSION AND PRACTICE IMPLICATIONS: Health communication interventions to promote palliative care are needed because there is still significant unclarity about the goals of palliative care, which negatively affects its acceptance. This study instructs on how to intervene specifically in the Italian-speaking part of Switzerland, including what to communicate and how. Further, our findings can inspire similar studies in other Swiss regions or countries that can optimize recognition, knowledge, and understanding and contribute to filling gaps in populations' health service demand and utilization.

Patients' perception of hope in palliative care: A systematic review and narrative synthesis.

OBJECTIVE: The aim of this study was to systematically review and synthesize the literature on patients' perceptions of hope in palliative care. METHODS: PubMed, Scopus, SocINDEX, Cochrane, and Web of Science were screened against the eligibility criteria. After familiarization with the data and conduction of the coding process, studies were thematically analyzed using Braun and Clarke's methodology. The research question guiding our analysis was: what is said about hope from patients in PC? RESULTS: The database searches yielded 24 eligible studies. Three main themes emerged from the studies: Hope beliefs (encompassing patients' understanding of hope and characteristics assigned to it), Hope functions (including the role that hope plays for patients) and Hope work (highlighting aspects that in patients' perspective cultivate hope). CONCLUSION: This review emphasizes the importance of acknowledging patients' understanding of hope, its role, and the efforts required to sustain it. In particular, it suggests that hope serves as a valuable strategy, fostering meaningful personal relationships towards end of life. PRACTICE IMPLICATIONS: In order to address communication challenges in clinical practice, a potential fruitful strategy for nurturing hope could involve engaging family and friends in hope interventions facilitated by healthcare professionals.

A qualitative analysis of educational, professional and socio-cultural issues affecting interprofessional collaboration in oncology palliative care.

OBJECTIVES: Oncology palliative care (PC) services seek to improve quality of life in patients with cancer. PC providers face significant systemic obstacles, stemming from insufficient collaboration between healthcare providers. This study explores these obstacles and strategies to help facilitate successful collaboration amongst healthcare providers at a systemic level. METHODS: A multicenter qualitative study was conducted via interviews and focus groups. Fifty employees in Italian-speaking Switzerland were interviewed, along with ten relatives of oncology patients. Framework analysis was used to identify and categorize the most prominent themes. RESULTS: Three main themes were identified: knowledge of and connection to other healthcare approaches; beliefs, attitudes and behavior regarding collaboration; and values, attitudes and beliefs towards life, end-of-life and optimal care approaches for oncology patients. CONCLUSIONS: Strategies that promote interprofessional collaboration and oncology PC services should foster a cultural shift towards perceiving these services as a medical specialty, thereby contributing to quality patient care. IMPLICATIONS: An overview of potential limitations is provided, in addition to a timeline of interprofessional collaboration which would help to optimize oncology PC services.

Health professionals' view on the role of hope and communication challenges with patients in palliative care: A systematic narrative review.

OBJECTIVE: To identify health professionals' (HPs) perspectives on the role of hope and the main challenges faced when communicating with patients in palliative care (PC). METHODS: Search on PubMed, Scopus, SocIndex, Cochrane, and Web of Science using: palliat*, palliative care, palliative medicine, hospice care, terminal care, long term care, supportive care, end of life (EOL) care and hope*, followed by a thematic narrative analysis. RESULTS: Thirty-five studies were included. HPs' views were grouped in: Bringing out hope and Taking down hope. HPs believe that hope is elicited through a personal patient-provider bond and exhibited through medical treatment delivery. HPs face difficulties when delivering prognosis, referring to hospice, and providing palliation. CONCLUSION: Hope is conveyed through verbal and non-verbal communication. HPs struggle to account for hope's shifting character, challenging the engagement in EOL discussions. PRACTICAL IMPLICATIONS: Findings show a patient-provider clash of perspectives, suggesting a gap in acknowledging the shifting nature of hope. An important question emerges: Are the existing theories of hope that are solely explained from a patient experience relevant for HPs' own interpretation? Investigating the HPs' attitudes gathered in collective experiences in PC, might contribute to answering the question in the context of building more constructive communication approaches.

A qualitative exploration of interactional and organizational determinants of collaboration in cancer palliative care settings: Family members', health care professionals' and key informants' perspectives.

As life expectancy has increased, a growing number of people experience conditions, including cancers, that carry complex health and social needs. Palliative care services have the potential to address these needs but face significant obstacles. One major obstacle is suboptimal interprofessional collaboration. This study's goal was an in-depth exploration of interactional and organizational barriers and supports of collaboration in palliative care in Switzerland. We sought the perspectives of health care professionals, patients' family members and leaders and experts in oncology/palliative care delivery (key informants) through interviews and focus groups with fifty HPs and key informants and ten patients' family members. Qualitative analyses of interviews and focus groups used framework analysis. We identified three major themes of interaction: personal characteristics, communication, and connectedness with other health care professionals; and three major organizational themes: service characteristics, standardized communication and processes, and service coordination and promotion. Based on our findings, we recommend that health care professionals consider strategies to increase their collaboration and communication skills and opportunities to interact. We advocate the implementation of methods for coordinating services, standardization of consultation/referral procedures and communication between health care professionals, and the promotion of underutilized services to foster successful, sustainable collaboration.

Hope and therapeutic privilege: time for shared prognosis communication.

Communicating an unfavourable prognosis while maintaining patient hope represents a critical challenge for healthcare professionals (HPs). Duty requires respect for the right to patient autonomy while at the same time not doing harm by causing hopelessness and demoralisation. In some cases, the need for therapeutic privilege is discussed. The primary objectives of this study were to explore HPs' perceptions of hope in the prognosis communication and investigate how they interpret and operationalise key ethical principles. Sixteen qualitative semistructured interviews with HPs from different positions and experience, including doctors and nurses in four different departments (intensive care, oncology, palliative care, rehabilitation), were conducted in the Ticino Cantonal Hospital, Switzerland. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. HPs defined prognosis and patient hope as interdependent concepts related to future perspectives for subjective quality of life. Two main factors allow HPs to maximise the benefits and minimise the harm of their communication: respecting the patient's timing and sharing the patient's wishes. Time is required to reframe needs and expectations. Furthermore, communication needs to be shared by HPs, patients and their relatives to build common awareness and promote a person-centred approach to prognosis. In this process, interprofessional collaboration is key: doctors and nurses are complementary and can together guarantee that patients and relatives receive information in the most appropriate form when they need it. Organisational aspects and the HPs' emotional difficulties, particularly in coping with their own despair, are barriers to effective communication that need further investigation.

Breast Cancer Survivorship, Quality of Life, and Late Toxicities.

Breast cancer is the most frequent cancer in women: in 2018, almost two million cases have been diagnosed all over the world and it represents the principal cause of death from a neoplastic disease in women. In the past years, breast cancer prognosis has significantly improved over time: currently 5-year survival rates are in the range of 90%, and 10-year survival is about 80%. This improvement has been mostly observed in western countries, due to high coverage and compliance with screening programs, leading to early diagnosis, i.e., when the disease is at a subclinical level, and to an improvement in tumor molecular characterization and innovative systemic treatments. Yet the identification of different biological breast cancer subtypes prompted the development of innovative targeted agents and improved treatment personalization. On the other hand, longer survival rates and increasing proportions of cured patients require dedicated strategies to manage long-term sequelae of breast cancer treatments, with particular attention to quality of life. This review analyzes the most important issues, potentially occurring with cancer treatments, concerning long-term sequelae and quality of life, to define a global approach to breast cancer survivorship.

Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families.

BACKGROUND: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families. METHODS: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis. RESULTS: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients' openness to their own needs). CONCLUSIONS: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals' communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.

Narrative in cancer research and policy: voice, knowledge and context.

The potential applications of narrative within medical practice are attracting increased interest. In particular, personal narratives afford rich insights into how encounters with cancer and the associated provision of care are experienced, understood and represented. Such first-person accounts are practically useful in indicating improvements to cancer care and politically significant in providing a means to enable the patient voice and legitimising experiential knowledge alongside a biomedical paradigm. However, personal narratives are necessarily and always constructed in particular social and political contexts and through existing 'meta-narratives' relating to cancer, health, illness and a flourishing life. The present paper first examines work on personal cancer narratives to critically review the opportunities for narrative within cancer care. We then reflect on the crucial role of meta-narratives of cancer as framings within which personal narratives can be both enabled and constrained.

Online consultations in cyberpharmacies: completeness and patient safety.

Many online pharmacies that serve as a substitute for original or personal medical prescriptions use a health questionnaire for consumers to complete on their Web site for buying prescription-only medicines. A content analysis of online medical questionnaires from a sample of online pharmacies (OPs) examined their completeness. Fifty-seven questionnaires were identified in which online pharmacies sought health status assessment from online purchasers. To evaluate the questionnaires, a checklist tallied their characteristics, including general features, medical history requested, and involvement of the consumer's doctor. Drug allergies were queried in 55 OPs (96.5%) and other allergies in 40 (70.2%). All of the questionnaires asked whether the consumer had suffered or was currently suffering from a particular illness, but a question about past surgery was present in 23 sites (40.3%) only; 40 sites (70.2%) asked women if they were pregnant or breastfeeding. Only 30 pharmacies out of 57 (52.6%) asked if the consumer's family doctor was aware of his/her intention of buying online and an even lower percentage (19.3%) asked if the purchase was based on a medical diagnosis rendered by a physician. Less than 20% of the pharmacies asked for the name, address, or telephone number of the consumer's family doctor. The results confirm the inadequacy of online pharmacy medical questionnaires in the assessment of health status for prescribing drugs. The results suggest that these questionnaires aim more at giving the consumer a false sense of health assurance than performing an effective assessment of his or her health status relative to the drug purchase.

Online patient education and risk assessment: project OPERA from Cancerbackup. Putting inherited breast cancer risk information into context using argumentation theory.

OBJECTIVE: Many people are concerned about their family history of breast cancer, and are anxious about the possibility of developing breast cancer themselves. The majority of these people are likely not to be at significantly increased risk of developing inherited breast cancer. All women are at risk of developing sporadic breast cancer, and this risk increases with age. This project aims to aid people's understanding of these issues using an interactive online computer programme. METHODS: The UK National Institute of Health and Clinical Excellence has published guidance for the National Health Service on the management of familial breast cancer. That guidance lays down clear criteria for categorising risk level and the appropriate management options. We have developed a user-friendly computer programme named OPERA (online patient education and risk assessment) which captures the individuality of the user's situation in a comprehensive way, and then produces personalised information packages, building on the theoretical framework of argumentation developed by Toulmin [Toulmin S. The uses of argument. Cambridge, MA: Cambridge University Press; 1958]. We will test this programme in a series of pilot studies commencing in 2007. RESULTS: This paper describes the progress of this project to date and focuses on the design of the programme. CONCLUSION: It is possible to construct a user friendly programme which delivers a personalised information package to individuals who are concerned about their risk of developing breast cancer. PRACTICE IMPLICATIONS: This user friendly programme needs to be tested within a series of carefully thought out pilot studies before it is ready for general release and use by the public.