Search

Aim and Objectives Background Design Methods Results Conclusions Relevance to Clinical Practice Patient or Public Contribution To explore how chronic illness transforms the self when living with and managing chronic illness and what this means for their self and identity. We also discuss how people with chronic conditions could be supported by healthcare professionals to manage illness in daily life.Self‐management recommendations from health care are commonly based on a biomedical understanding of the disease. People's experiences of how a condition affects them and adequate support are crucial for their outcomes in daily self‐management.A narrative review.A systematic search was undertaken during January 2021 across the databases MEDLINE, CINAHL, PsycINFO, Soc INDEX and Philosopher's Index. A quality appraisal of articles was performed. Our analysis was inspired by qualitative content analysis. The PRISMA Checklist 2020/EQUATOR guidelines was used to report the study.Twenty‐eight peer‐reviewed qualitative empirical articles focusing on self in a variety of chronic illnesses with relevance to nursing published from January 2010 to December 2020 were included. The main theme, Developing from an uncertain existence to meaning and wholeness, was built up by the five themes: Walking on an unstable ground; Being stalemated; Being involved with others for better or worse; Searching for meaning; and lastly, Modifying self and integrating a new way of living.The results illuminate experiences that seldom are prioritized but need to be addressed by health professionals. Such experiences are oriented more towards the existential self rather than medical issues, why it is important to go beyond the medical lens.This is important knowledge for nurses aiming to support people with chronic illnesses. Nurses supporting people in self‐management need to be aware that by teaching and encouraging people to revise their daily habits, they also work on the boundaries of their self‐concept.No patient or public contribution. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to explore the experiences of being a clinical research nurse (CRN), in Sweden. Design: A qualitative study analysing individual interview data. Methods: Interviews with 10 participants were conducted in April 2017 and repeated with five participants in May 2022. A semi‐structured interview guide was used to cover topics such as experiences of working in a new role and professional challenges related to the role. The transcribed interviews were analysed inductively using qualitative content analysis. Results: The main theme revealed that the CRNs experienced their work role as being like a hub in a wheel, using an ethical compass, but without real power. The six themes identified showed that CRNs worked independently and relied on clinical experiences as nurses but needed more education. They not only had a sense of duty but also too large responsibilities. Furthermore, they viewed their work as valuable and important. However, they needed an accentuated ethical compass and were also affected by power relations that negatively impacted work. Conclusion: Working as a CRN means being in a central position and working independently, which requires diverse skills and competencies. CRNs, however, face and manage complex ethical and practical challenges without real power. They experience huge responsibilities but need education and acknowledgement, indicating a need for improvement. This is an important message to stakeholders and managers about the necessity of taking adequate action to support CRNs who are crucial resources in clinical research. Patient or Public Contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Diagnosis of cancer is challenging in primary care due to the low incidence of cancer cases in primary care practice. A prolonged diagnostic interval may be due to doctor, patient or system factors, or may be due to the characteristics of the cancer itself. The objective of this study was to learn from Primary Care Physicians' (PCP) experiences of incidents when they had failed to think of, or act on, a cancer diagnosis. A qualitative, online survey eliciting PCP narratives. Thematic analysis was used to analyse the data. A primary care study, with narratives from 159 PCPs in 23 European countries. PCPs' narratives on the question 'If you saw this patient with cancer presenting in the same way today, what would you do differently? The main themes identified were: thinking broadly; improvement in communication and clinical management; use of other available resources and 'I wouldn't do anything differently'. To achieve more timely cancer diagnosis, PCPs need to provide a long-term, holistic and active approach with effective communication, and to ensure shared decision-making, follow-up and continuing re-assessment of the patients' clinical conditions. Diagnosing cancer in primary care is challenging due to the low incidence of cancer in practice and the multiple confounding factors that are involved in the diagnostic process. The need to think broadly, make improvements in communication and clinical management, and use other available resources were the main themes from Primary Care Physicians' (PCPs') narratives about their learning experiences from missed or late cancer diagnoses. A long-term, holistic and active approach with effective communication, follow-up and continuing re-assessment of the patients' clinical conditions was another theme for making improvements. Some PCPs, on reflection, would not have done anything differently. [ABSTRACT FROM AUTHOR]

Background: While primary care physicians (PCPs) play a key role in cancer detection, they can find cancer diagnosis challenging, and some patients have considerable delays between presentation and onward referral. Aim: To explore European PCPs' experiences and views on cases where they considered that they had been slow to think of, or act on, a possible cancer diagnosis. Design & setting: A multicentre European qualitative study, based on an online survey with open-ended questions, asking PCPs for their narratives about cases when they had missed a diagnosis of cancer. Method: Using maximum variation sampling, PCPs in 23 European countries were asked to describe what happened in a case where they were slow to think of a cancer diagnosis, and for their views on why it happened. Thematic analysis was used to analyse the data. Results: A total of 158 PCPs completed the questionnaire. The main themes were as follows: patients' descriptions did not suggest cancer; distracting factors reduced PCPs' cancer suspicions; patients' hesitancy delayed the diagnosis; system factors not facilitating timely diagnosis; PCPs felt that they had acted wrongly; and problems with communicating adequately. Conclusion: The study identified six overarching themes that need to be addressed. Doing so should reduce morbidity and mortality in the small proportion of patients who have a significant, avoidable delay in their cancer diagnosis. The 'Swiss cheese' model of accident causation showed how the themes related to each other. [ABSTRACT FROM AUTHOR]

Background: Studies have reported on the important role of the clinical research nurse in clinical studies. Yet, there is no international consensus about the role's competencies and tasks. Furthermore, the literature offers a little description of the career pathway from a ward‐based registered nurse to a clinical research nurse. More knowledge about this specific role could benefit the nursing profession as well as increase the quality of clinical research. Aim: The aim of the study was to explore Swedish registered nurses' experiences transitioning into the clinical research nurse role. Design: The study had a qualitative design. Data were collected via semi‐structured interviews. Inductive qualitative content analysis was employed. Methods: Ten participants (i.e., clinical research nurses) were interviewed in the spring of 2017. A semi‐structured interview guide was used to address the transition into the clinical research nurse role, experience working in a new role, experience of ethical dilemmas and experience of organizational and professional issues related to the role. The interviews were analysed inductively using qualitative content analysis. Results: The registered nurses described experiencing reality shock when they became clinical research nurses; that is, it was a challenging and transforming experience. The main theme, a challenging transition, was developed from the four subthemes highlighting that it defied their previous nursing role. They experienced an unclear professional identity, extended professional mandate, increased professional status and growing ethical consciousness in their new role. Conclusion: The results highlight that registered nurses who became clinical research nurses had needs that were both distinct from and overlapped with those of their former professional role as registered nurses. To avoid reality shocks, the development of clear competence pathways for nurses to become clinical research nurses, including introduction, mentorship and continued support, is necessary. Making their professional title more homogeneous, nationally and internationally, would facilitate role identification and comparisons in research. [ABSTRACT FROM AUTHOR]

Objectives: This study examined whether sociodemographic factors, including distance to hospital, were associated with differences in the diagnostic interval and the treatment interval for colorectal cancer in northern Sweden. Methods: Data were retrieved from the Swedish cancer register on patients (n = 446) diagnosed in three northern regions during 2017–2018, then linked to data from Statistics Sweden and medical records. Also, Google maps was used to map the distance between patients' place of residence and nearest hospital. The different time intervals were analysed using Mann–Whitney U‐test and Cox regression. Results: Differences in time to diagnosis were found between groups for income and distance to hospital, favouring those with higher income and shorter distance. The unadjusted regression analysis showed higher income to be associated with more rapid diagnosis (HR 1.004, CI 1.001–1.007). This association remained in the fully adjusted model for income (HR 1.004, CI 1.000–1.008), but not for distance. No differences between sociodemographic groups were found in the treatment interval. Conclusion: Higher income and shorter distance to hospital were in the unadjusted models associated with shorter time to diagnosis for patients with CRC in northern Sweden. The association remained for income when adjusting for other variables even though the difference was small. [ABSTRACT FROM AUTHOR]

Aim: To explore the role of CRNs in Sweden and differences in competences and tasks, using the Clinical Trial Nursing Questionnaire – Swedish version (CTNQ‐SWE). Design: A cross‐sectional survey. Methods: Participants were identified through strategic sampling. Data were analysed by descriptive and comparative statistics. Results: The respondents were experienced nurses who felt proficient in their role, they felt more acceptance by the principal investigators than by nursing colleagues. A majority of CRNs are involved in all procedures specified in the CTNQ‐SWE. The most often performed tasks, also rated as the most important by the CRNs, concerned informed consent and management of investigational products. The education was often informal: with a lack of job descriptions and professional development plans. Need of formal specialist education was expressed. Conclusions: Knowledge about the role description can be used by clinical research enterprise internationally and healthcare organizations aiming to support CRNs in their role. [ABSTRACT FROM AUTHOR]

Aim: To describe perceived needs of support among patients close to discharge from the hospital and at the end of primary curative radiotherapy for breast, colorectal or prostate cancer. Background: Few studies have specifically explored patients' early support needs when ending primary curative treatment. Design: Qualitative interview study design. Methods: A purposive sample of 27 participants with breast, colorectal or prostate cancer aged 33–88 years. The interviews were analysed by qualitative content analysis. Reporting followed the COREQ guidelines. Results: Personal support to reach a sense of control and Social support for personal growth were two main themes, highlighting that people required adapted support from health care since needs of support could change over time. This support from health care was also relying on that trust‐based relationships were developed. Through mutuality with others and engagement in meaningful activities people became enabled and felt further supported. Personal support from health care seems specifically important for the patients' feelings of control and could be a facilitator for patients to identify further support for personal growth in how to manage, on the one hand, illness and insecurity, and on the other, their well‐being and everyday life with cancer. Conclusion: To empower patients who are ending primary treatment and being close to discharge from hospital, healthcare professionals should recognise patients' shifting needs and adapt the support. Adapted support is significant for patients' sense of safety. Biomedical information is not sufficient to fully support patients. Relevance to clinical practice: Offering easy access to supportive care when primary treatment is finished could diminish people's stress, insecurity and avoidable use of healthcare services. Even after discharge, nurses preferably should adapt and offer support tailored to patients' needs. Such support may improve patients' sense of control and safety, trust in health care, feelings of community and encourage personal growth. [ABSTRACT FROM AUTHOR]

To explore how cancer could be diagnosed in a more timely way. Grounded theory analysis of primary care physicians' free text survey responses to: 'How do you think the speed of diagnosis of cancer in primary care could be improved?'. Secondary analysis of primary care physician interviews, survey responses, literature. Primary care in 20 European Örenäs Research Group countries. Primary care physicians: 1352 survey respondents (2013-2016), 20 Spanish and 7 Swedish interviewees (2015–2019). Conceptual explanation of how to improve timeliness of cancer diagnosis. Pluralistic task shifting is a grounded theory of a composite strategy. It includes task sharing – among nurses, physicians, nurse assistants, secretaries, and patients – and changing tasks with cancer screening when appropriate or cancer fast-tracks to accelerate cancer case finding. A pluralistic dialogue culture of comprehensive collaboration and task redistribution is required for effective pluralistic task shifting. Pluralistic task shifting relies on cognitive task shifting, which includes learning more about slow analytic reasoning and fast automatic thinking initiated by pattern recognition; and digital task shifting, which by use of eHealth and telemedicine bridges time and place and improves power symmetry between patients, caregivers, and clinicians. Financial task shifting that involves cost tracking followed by reallocation of funds is necessary for the restructuring and retraining required for successful pluralistic task shifting. A timely diagnosis reduces expensive investigations and waiting times. Also, late-stage cancers are costlier to treat than early-stage cancers. Timing is central to cancer diagnosis: not too early to avoid overdiagnosis, and never too late. We present pluralistic task shifting as a conceptual summary of strategies needed to optimise the timeliness of cancer diagnosis. Cancer diagnosis is under-researched in primary care, especially theoretically. Thus, inspired by classic grounded theory, we analysed and conceptualised the field: Pluralistic task shifting is a conceptual explanation of how the timeliness of cancer diagnosis could be improved, with data derived mostly from primary care physicians. This includes task sharing and changing tasks including screening and cancer fast-tracks to accelerate cancer case finding, and requires cognitive task shifting emphasising learning, and digital task shifting involving the use of eHealth and telemedicine. Financial task shifting with cost tracking and reallocation of funds is eventually necessary for successful pluralistic task shifting to happen. [ABSTRACT FROM AUTHOR]

Sweden has tried to speed up the process of early cancer detection by standardization of care. This increased focus on early cancer detection provides people with a conflicting norm regarding the importance of recognizing possible cancer symptoms and the responsibility of not delaying seeking care. Based on existing norms about patients' responsibility and care seeking, this study explores how patients experience encounters with primary care physicians when they seek care for symptoms potentially indicating cancer. Thirteen semi-structured interviews were conducted with patients receiving care for symptoms indicative of cancer in one county in northern Sweden. Data was analysed with thematic analysis. The common notion of describing patients as customers in a healthcare context does not sufficiently capture all aspects of what counts as being a person seeking care. Instead, people interacting with primary care face a twofold role in where they are required to take the role not only of customer but also of seller. Consequently, people shift between these two roles in order to legitimize their care seeking. Standardization oversimplifies the complexity underlying patients' experience of care seeking and interaction with healthcare. Hence, healthcare must acknowledge the individual person within a standardized system. [ABSTRACT FROM AUTHOR]

Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay's model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here. [ABSTRACT FROM AUTHOR]

Informal caregiving is increasingly considered a health care delivery-resource within the North European welfare states. While 'informal' often refers to non-professional, 'caregiving' connotes both affective concern (caring about) and practical action (caring for). This duality of meanings, however, often refers to the one direction in which care is given. Care, we suggest, is relational and also requires that people receiving care are able to or wanting to share their needs. Informal caregiving thus requires sharing. Based on 155 semi-structured, narrative interviews with people with lung or bowel cancer, living in Denmark, Sweden or England, this paper explores how and with whom people 'share' when they fall ill. We approach sharing as a heuristic for reflecting on informal-caregiving, and illustrate how being cared for or asking for care are entangled with the management of social risks and notions of selfhood. We conclude that informal caregiving should explicitly be recognised as morally and sympathetically committed practices, which attend to the diversity of local moral worlds of patients, their needs and experiences. [ABSTRACT FROM AUTHOR]

Objective: We aim to explore how GPs assign meanings and act upon patients' symptoms in primary care encounters in the context of standardized cancer patient pathways (CPPs). Design, setting and subjects: Thirteen individual interviews were conducted with GPs, at primary healthcare centers (n = 4) in one county in northern Sweden. Interviews were analyzed using grounded theory method. The results were then linked to symbolic interactionism. Main outcome measures: GPs' perspectives about assigning meanings to patients' presented symptoms and perception about CPPs. Results: In the encounter, GPs engaged in two simultaneous interactions, one with patients' symptoms – and the other with CPPs. The core category Disentangling patients' care trajectory consists of three categories, interpreted as GPs' strategies developed to assign meaning to symptoms. These strategies are carried out not in a straightforward manner but rather in a conflicting way, illuminating the complexity of GPs' daily work. Conclusions: Interacting with patients is vital for assigning meaning to presented symptoms. However, nowadays GPs are not only required to interact with patients, they are also required to interact with CPPs. These standardized routines might create pressure and demands on GPs, especially for those experiencing a lack of information about CPPs. Beside of carrying out the challenging patient/person-centered dialogues and interpreting presented symptoms, GPs also need to link the interpreted symptoms to CPPs. Therefore, it is essential that GPs are given opportunities at their workplaces to continuously be informed and be supported in order to practice CPPs and thereby optimize trajectories for patients undergoing cancer diagnostics. Current awareness: • GPs deliberation about patients' trajectories is a complex process, often dealing with vague symptoms. How CPPs influence this process within the encounter has not been studied. Main statements: • GPs in our study were involved in two simultaneous interactions, one with patients' symptoms in the encounter – and the other with CPPs within the healthcare organization. • Symbolic interactionism helped capture how GPs deliberated about conflicting and paradoxical aspects of the encounter, in terms of balancing two contradictory ways of action that GPs face when providing patient/person-centered care and linking to CPPs. • Based on our results, primary care needs support from healthcare organizations to build capacity about CPPs and how to use them. [ABSTRACT FROM AUTHOR]

Aims and objectives: To explore patients' experiences of contact and interaction with healthcare professionals (HCPs) during the diagnostic process of melanoma. Background: In Sweden, most patients with suspected skin lesions seek care at the primary level of services in the first instance. Previous research describes the diagnostic process as a complex journey with uncertainty. Nonetheless, the importance of contact and interaction between patient and HCPs during the diagnostic process is rarely explored. Design: This study adopted a qualitative design in which semi‐structured interviews were conducted and the COREQ‐checklist for qualitative studies employed (EQUATOR guidelines). Methods: A sample of 30 patients (15 women, 15 men) diagnosed with melanoma was included. Secondary analysis of interviews was carried out using qualitative content analysis. Results: One theme emerged: Wishing to be perceived as a capable and resourceful person that consisted of three categories: (a) The need of being valued, (b) The need of being informed and (c) The need of taking actions. Conclusions: Our results suggest that patients wish to be valued as capable and resourceful persons as well as to be provided with honest and sufficient information about the diagnosis and subsequent procedures. By fulfilling these wishes, HCPs can involve patients in the diagnostic process and reduce patients' uncertainty. A need of supportive and accessible health care to manage the diagnostic process and to reduce patients' struggle for care was also identified. Relevance to the clinical practice: Patients are satisfied when health care is organised in a patient‐/person‐centred manner, that is, in accordance with patients' needs, avoiding gatekeeping, and when HCPs interact respectfully in encounters. Accessible HCPs during the diagnostic process of melanoma are required to inform, support and navigate patients within the healthcare system and through their diagnostic journey. [ABSTRACT FROM AUTHOR]

Objectives To compare and examine whether, when and how patients with lung cancer in three countries, with different survival rates, talk about cigarette smoking and its relationship with help-seeking. Design A qualitative cross-country comparison with analysis of narrative interviews. Setting Participants in Sweden, Denmark and England were interviewed during 2015-2016. Interviews, using a narrative approach, were conducted in participants' home by trained and experienced qualitative researchers. Participants Seventy-two men and women diagnosed with lung cancer were interviewed within 6 months of their diagnosis. Results The English participants, regardless of their own smoking status, typically raised the topic of smoking early in their interviews. Smoking was mentioned in relation to symptom appraisal and interactions with others, including health professionals. Participants in all three countries interpreted their symptoms in relation to their smoking status, but in Sweden (unlike England) there was no suggestion that this deterred them from seeking care. English participants, but not Swedish or Danish, recounted reluctance to consult healthcare professionals with their symptoms while they were still smoking, some gave up shortly before consulting. Some English patients described defensive strategies to challenge stigma or pre-empt other people's assumptions about their culpability for the disease. A quarter of the Danish and 40% of the Swedish participants did not raise the topic of smoking at any point in their interview. Conclusion The causal relationship between smoking and lung cancer is well known in all three countries, yet this comparative analysis suggests that the links between a sense of responsibility, stigma and reluctance to consult are not inevitable. These findings help illuminate why English patients with lung cancer tend to be diagnosed at a later stage than their Swedish counterparts. [ABSTRACT FROM AUTHOR]

Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. Design Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. Participants 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. Setting Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants' homes. Results Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. Conclusion We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced. [ABSTRACT FROM AUTHOR]

BackgroundRecent epidemiologic data show that Denmark has considerably poorer survival from common cancers than Sweden. This may be related to a lower awareness of cancer symptoms and longer patient intervals in Denmark than in Sweden. The aims of this study were to: 1) compare population awareness of three possible symptoms of cancer (unexplained lump or swelling, unexplained bleeding and persistent cough or hoarseness); 2) compare anticipated patient interval when noticing any breast changes, rectal bleeding and persistent cough; and 3) examine whether potential differences were noticeable in particular age groups or at particular levels of education in a Danish and Swedish population sample. MethodData were derived from Module 2 of the International Cancer Benchmarking Partnership. Telephone interviews using the Awareness and Beliefs about Cancer measure were conducted in 2011 among 3000 adults in Denmark and 3070 adults in Sweden. ResultsDanish respondents reported a higher awareness of two of three symptoms (i.e. unexplained lump or swelling and persistent cough or hoarseness) and a shorter anticipated patient interval for two of three symptoms studied (i.e. any breast changes and rectal bleeding) than Swedish respondents. Differences in symptom awareness and anticipated patient interval between these countries were most pronounced in highly educated respondents. ConclusionSomewhat paradoxically, the highest awareness of symptoms of cancer and the shortest anticipated patient intervals were found in Denmark, where cancer survival is lower than in Sweden. Thus, it appears that these differences in symptom awareness and anticipated patient interval do not help explain the cancer survival disparity between Denmark and Sweden. [ABSTRACT FROM PUBLISHER]

Background: Sweden and Denmark are neighbouring countries with similarities in culture, healthcare, and economics, yet notable differences in cancer statistics. A crucial component of primary prevention is high awareness of risk factors in the general public. We aimed to determine and compare awareness of risk factors for cancer between a Danish and a Swedish population sample, and to examine whether there are differences in awareness across age groups.Methods: Data derive from Module 2 of the International Cancer Benchmarking Partnership. Telephone interviews were conducted with 3000 adults in Denmark and 3070 in Sweden using the Awareness and Beliefs about Cancer measure. Data reported here relate to awareness of 13 prompted risk factors for cancer. Prevalence ratios with 95 % confidence intervals were calculated to examine associations between country, age, and awareness of risk factors.Results: Over 90 % of respondents in both countries recognized smoking, use of sunbeds and ionizing radiation as risk factors for cancer. Lowest awareness (<50 %) was found for HPV-infection, low fruit and vegetable intake and alcohol intake. Swedish respondents reported higher awareness than Danish respondents for ten of the 13 risk factors studied. Respondents from Denmark reported higher awareness only regarding low fruit and vegetable intake and use of sunbeds. Low physical activity was the only risk factor for which there was no difference in awareness between the countries. A decline in awareness was generally seen with increasing age in both countries, but deviating patterns were seen for alcohol intake, red/processed meat, obesity and age 70+.Conclusions: This study supports findings from other European studies that generally demonstrate modest public awareness of many established cancer risk factors. Efforts should be made to improve awareness of the cancer risk factors HPV-infection, low fruit and vegetable intake and alcohol intake, which showed particularly low awareness in both countries. Previous studies indicate that repeated, broad campaigns are successful, and suggest that a multimedia approach is used. [ABSTRACT FROM AUTHOR]

Simple Summary: Cancer worry is a known health concern in cancer patients and people with a genetic predisposition to cancer. We measured how worried people, in general, are about developing cancer to describe levels in non-affected individuals. In total, 943 respondents completed a survey containing the Cancer Worry Scale (CWS) and hypothetical questions asking if they would attend a colonoscopy screening at a 5, 10, or 70 percent lifetime risk of developing bowel cancer. Unaffected individuals scored a mean of 9.46 on the six-item CWS. Women scored significantly higher than men (9.91 vs. 9.06). Women and parents had higher cancer worry than men and people without children when ruling out differences in education, age, and country of birth. People who worried more were also more inclined to undergo a colonoscopy screening, and intention increased with higher levels of hypothetical risk. These data may be helpful in future work on cancer worry and cancer prevention. Purpose: We describe levels of cancer worry in the general population as measured with the Cancer Worry Scale (CWS) and investigate the association with colonoscopy screening intentions in three colorectal cancer risk scenarios. Methods: The data were sourced through a population-based survey. Respondents (n = 943) completed an eight-item CWS and questions on colonoscopy screening interest at three hypothetical risk levels. Results: Respondents without a personal cancer history (n = 853) scored 9.46 on the six-item CWS (mean, SD 2.72). Mean scores were significantly higher in women (9.91, SD 2.89) as compared to men (9.06, SD 2.49, p < 0.001). Linear regression showed higher cancer worry in women and those with children when controlling for education, age group, and country of birth. High cancer worry (six-item CWS mean >12) was identified in 25% of women and in 17% of men. Among those, 71% would attend a colonoscopy screening compared to 52% of those with low cancer worry (p < 0.001, 5% CRC-risk). Conclusions: The distribution of cancer worry in a general population sample showed higher mean scores in women, and levels overlapped with earlier findings in cancer-affected samples. Respondents with high cancer worry were more inclined to undergo a colonoscopy screening, and intention increased with higher levels of hypothetical risk. [ABSTRACT FROM AUTHOR]

This study explores perceptions and preferences on receiving genetic risk information about hereditary cancer risk in members of the Swedish public. We conducted qualitative content analysis of five focus group discussions with participants (n = 18) aged between 24 and 71 years, recruited from various social contexts. Two prominent phenomena surfaced around the interplay between the three stakeholders involved in risk disclosure: the individual, healthcare, and the relative at risk. First, there is a genuine will to share risk information that can benefit others, even if this is difficult and causes discomfort. Second, when the duty to inform becomes overwhelming, compromises are made, such as limiting one's own responsibility of disclosure or projecting the main responsibility onto another party. In conclusion, our results reveal a discrepancy between public expectations and the actual services offered by clinical genetics. These expectations paired with desire for a more personalized process and shared decision-making highlight a missing link in today's risk communication and suggest a need for developed clinical routines with stronger healthcare–patient collaboration. Future research needs to investigate the views of genetic professionals on how to address these expectations to co-create a transparent risk disclosure process which can realize the full potential of personalized prevention. [ABSTRACT FROM AUTHOR]