Clinical research nurses perceive their role as being like the hub of a wheel without real power: Empirical qualitative research.

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.

How hereditary cancer risk disclosure to relatives is handled in practice - Patient perspectives from a Swedish cancer genetics clinic.

OBJECTIVES: Hereditary cancer risks can be effectively managed if at-risk relatives enroll in surveillance and preventive care. Family-mediated risk disclosure has internationally been shown to be incomplete, selective and leave over a third of eligible at-risk individuals without access to genetic counseling. We explored patients handling of cancer risk information in practice. METHODS: We conducted twelve semi-structured interviews with patients who had completed their genetic counseling and been asked to disclose risk information to relatives. Questions were designed to investigate lived experiences of communicating hereditary risk and focused on disclosure strategies, intrafamilial interactions and emotional responses. RESULTS: Qualitative content analysis yielded five categories. These span personal fears, shared responsibilities, feeling of empowerment, innovative solutions and unmet needs. Patients put high value on collaboration with their genetic healthcare professionals but also solicited better overview of the counseling process and more personalized, case-tailored information. CONCLUSIONS: Our results add novel insights about the practical strategies employed by genetic counselees and their motivations behind disclosing hereditary risk information to relatives. PRACTICE IMPLICATIONS: A patient-centered cancer genetics care would clarify roles and responsibilities around risk disclosure, inform counselees about the process upfront and tailor information to offer case-specific data with the family's inheritance pattern explained.

Swedish translation and psychometric testing of the Self-Conscious Emotions in COPD Questionnaire.

Assessment of self-conscious emotions is important to develop tailored interventions for people with chronic obstructive pulmonary disease (COPD). Previous instruments have largely been developed for mental health populations. The Self-Conscious Emotions in COPD Questionnaire was the first instrument to assess self-conscious emotions in people with COPD, but it was only available in English. The aim was to translate the Self-Conscious Emotions in COPD Questionnaire into Swedish and to evaluate its psychometric properties and internal structure in a Swedish context. The translation process included forward and backward translation, a multidisciplinary meeting, assessment of content validity, and cognitive interviews. The translated instrument was tested in a sample of 173 people with COPD between September 2021 and September 2022. Parallel analysis (PA), exploratory factor analysis (EFA), and test-retest reliability was performed. The content validity index (CVI) for the instrument was 0.88. Based on the PA, an EFA with a two-factor solution was conducted, with a high Cronbach's alpha (0.786-0.821), and one item about self-blame was excluded. The two factors were labelled: The burden of living with a disability and The desire to hide vulnerability. Test-retest reliability showed no difference between scale scores on factor or item level, except for one item. The Swedish Self-Conscious Emotions in COPD showed good validity and reliability. One item was excluded from the two subscales, indicating that the instrument needs to be further developed to cover the concept of self-blame. The instrument is expected to be a valuable tool for assessing self-conscious emotions in people with COPD.

What would primary care practitioners do differently after a delayed cancer diagnosis? Learning lessons from their experiences.

OBJECTIVE: 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. DESIGN: A qualitative, online survey eliciting PCP narratives. Thematic analysis was used to analyse the data. SETTING AND SUBJECTS: A primary care study, with narratives from 159 PCPs in 23 European countries. MAIN OUTCOME MEASURES: PCPs' narratives on the question 'If you saw this patient with cancer presenting in the same way today, what would you do differently? RESULTS: 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'. CONCLUSION (IMPLICATIONS): 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.

Adopting standardized cancer patient pathways as a policy at different organizational levels in the Swedish Health System.

BACKGROUND: Standardized cancer patient pathways as a new policy has been adopted in healthcare to improve the quality of cancer care. Within the health systems, actors at different levels manage the adoption of new policies to develop healthcare. The various actors on different levels play an important role and influence the policy adoption process. Thus, knowledge about how these actors use strategies when adopting cancer patient pathways as a policy in the health system becomes central. METHOD: The study's aim was to explore how actors at different organizational levels in the health system adopted cancer patient pathways. Our overarching case was the Swedish health system at the national, regional, and local levels. Constructivist Grounded Theory Method was used to collect and analyze qualitative interviews with persons working in organizations directly involved in adopting cancer patient pathways at each level. Twelve individual and nine group interviews were conducted including 53 participants. RESULTS: Organizational actors at three different levels used distinct strategies during the adoption of cancer patient pathways: acting as-missionaries, fixers, and doers. Acting as missionaries consisted of preaching the idea of cancer patient pathways and framing it with a common purpose to agree upon. Acting as fixers entailed creating a space to put cancer patient pathways into practice and overcome challenges to this. Acting as doers comprised balancing breadth and speed in healthcare provision with not being involved in the development of cancer patient pathways for the local context. These strategies were not developed in isolation from the other organizational levels but rather, each level interacted with one another. CONCLUSIONS: When adopting new policies, it is important to be aware of the different strategies and actors at various organizational levels in health systems. Even when actors on different levels developed separate strategies, if these contribute to fulfilling the four domains of inter-organizational collaboration, they can work well together to adopt new policies. Our study highlighted that the application of two domains was lacking, which meant that local actors were not sufficiently involved in collaboration, thus constricting the local use and optimization of cancer patient pathways in practice.

Exploring why European primary care physicians sometimes do not think of, or act on, a possible cancer diagnosis. A qualitative study.

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.

The Swedish Version of the eHealth Literacy Questionnaire: Translation, Cultural Adaptation, and Validation Study.

BACKGROUND: With the increasing digitalization in health care, an effective instrument is necessary to assess health care consumers' digital competencies-their "eHealth literacy." The 7-scale eHealth Literacy Questionnaire (eHLQ), based on the theoretically robust eHealth Literacy Framework, has shown strong psychometric properties in Denmark and Australia. OBJECTIVE: The aim of this study was to translate, culturally adapt, and evaluate the psychometric properties of the Swedish version of the eHLQ. METHODS: We followed the Translation Integrity Procedure guidelines to translate and culturally adapt the questionnaire to Swedish using forward and backward translations, review by an expert panel, and cognitive interviewing. The psychometric properties of the Swedish eHLQ were investigated by evaluating its internal consistency (Cronbach α) and a priori-defined factor structure (confirmatory factor analysis). RESULTS: A total of 236 primary health care patients and parents of hospitalized children were included in the validation analysis. The mean age was 48.5 years, and 129 (55%) were women. All 7 eHLQ scales showed good internal consistency, with the Cronbach α ranging from .82 to .92. Single-factor and 7-factor confirmatory factor analysis showed satisfactory model-fit values. With one exception, all items demonstrated satisfactory loadings on their respective factors. CONCLUSIONS: The Swedish eHLQ demonstrated strong psychometric properties. It has the potential as a useful tool for a variety of purposes, including population surveys, intervention evaluations, and eHealth service implementations.

The association between sociodemographic factors and time to diagnosis for colorectal cancer in northern Sweden.

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.

Transitioning to the clinical research nurse role - A qualitative descriptive study.

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.

Clarifying the role of clinical research nurses working in Sweden, using the Clinical Trial Nursing Questionnaire - Swedish version.

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.

Cancer Worry Distribution and Willingness to Undergo Colonoscopy at Three Levels of Hypothetical Cancer Risk-A Population-Based Survey in Sweden.

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.

Merging existing practices with new ones: the adjustment of organizational routines to using cancer patient pathways in primary healthcare.

BACKGROUND: The introduction of new tools can bring unintended consequences for organizational routines. Cancer Patient Pathways (CPP) were introduced into the Swedish healthcare system in 2015 to shorten time to diagnosis and treatment. Primary healthcare (PHC) plays a central role since cancer diagnosis often begins in PHC units. Our study aimed to understand how PHC units adjusted organizational routines to utilizing CPPs. METHOD: Six PHC units of varied size from both urban and rural areas in northern Sweden were included. Grounded theory method was used to collect and analyse group interviews at each unit. Nine group interviews with nurses and physicians, for a total of 41 participants, were performed between March and November 2019. The interviews focused on CPPs as tools, the PHC units' routines and providers' experiences with using CPPs in their daily work. RESULTS: Our analysis captured how PHC units adjusted organizational routines to utilizing CPPs by fusing existing practices with new practices to offer better quality of care. Specifically, three overarching organizational routines within the PHC units were identified. First, Manoeuvring diverse patient needs with easier patient flow, the PHC units handled the diverse needs of the population while simultaneously drawing upon CPPs to ease the patient flow within the healthcare system. Second, (Dis) integrating internal know-how, the PHC units drew upon internal competence even when PHC know-how was not taken into account by those driving the CPP initiative. Third, Coping with unequal relationships toward secondary care, the PHC units dealt with being in an unequal position while adopting CPPs instead further decreased possibilities to influence decision-making between care-levels. CONCLUSION: Adopting CPPs as a tool within PHC units brought various unintended consequences in organizational routines. Our study from northern Sweden illustrates that the PHC know-how needs to be integrated into the healthcare system to improve the use of new tools as CPP. Further, the relationships between different levels of care should be taken in account when introducing new tools for healthcare. Also, when adopting innovations, unintended consequences need to be further explored empirically in diverse healthcare contexts internationally in order to generate deeper knowledge in the research area.

Need of support perceived by patients primarily curatively treated for breast, colorectal, or prostate cancer and close to discharge from hospital-A qualitative study.

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.

Experiences of Online COVID-19 Information Acquisition among Persons with Type 2 Diabetes and Varying eHealth Literacy.

During the COVID-19 pandemic, the Internet has been a major source of information for people to keep updated with news and guidelines. However, concerns have been raised about the 'infodemic', which includes the overabundance of online information and the spread of misleading information. Adequate eHealth literacy skills among world citizens have therefore been emphasized as vital during the pandemic. Persons with type 2 diabetes have been at increased risk of severe outcomes of COVID-19 disease. This study aimed to explore online COVID-19 information acquisition experiences among persons with type 2 diabetes and varying eHealth literacy. Fifty-eight participants filled out the eHealth Literacy Scale (eHEALS), along with a qualitative questionnaire with free-text questions. Additionally, 10 participants were interviewed. Thematic analysis was applied to identify patterns in participants' experiences. Two domains were identified: perceived challenges with online information about COVID-19, and coping strategies to manage challenges. The perceived challenges were: being exposed to information overload, dealing with conflicting information, and being strongly emotionally affected. The related coping strategies were: protecting oneself, trusting authorities, taking command, and using common sense. These strategies often involved triangulation of the information obtained, including participants consulting their common sense, various sources, or family and friends. This paper highlights the crucial role of authorities in delivering online information, that according to health literacy principles, is easy to access, understand, and use. Furthermore, our results reinforce the importance of diabetes nurses, as well as healthcare professionals in general, in encouraging patients to share their Internet findings, promote information from reliable sources, and deliver tailored information that suits individual needs. Because our results underline the importance of social support in eHealth literacy and the assessment of online health information, the inclusion of family and friends needs to be increasingly considered in diabetes care. Due to the small homogenous sample, the results of this study cannot be generalized. However, the reader can assess the transferability to other situations and settings based on our contextual descriptions.

Pluralistic task shifting for a more timely cancer diagnosis. A grounded theory study from a primary care perspective.

OBJECTIVE: To explore how cancer could be diagnosed in a more timely way. DESIGN: 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. SETTING: Primary care in 20 European Örenäs Research Group countries. SUBJECTS: Primary care physicians: 1352 survey respondents (2013-2016), 20 Spanish and 7 Swedish interviewees (2015-2019). MAIN OUTCOME MEASURES: Conceptual explanation of how to improve timeliness of cancer diagnosis. RESULTS: 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. CONCLUSIONS: We present pluralistic task shifting as a conceptual summary of strategies needed to optimise the timeliness of cancer diagnosis.Key pointsCancer 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.

Shifting between roles of a customer and a seller - patients' experiences of the encounter with primary care physicians when suspicions of cancer exist.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

A Focus Group Study of Perceptions of Genetic Risk Disclosure in Members of the Public in Sweden: "I'll Phone the Five Closest Ones, but What Happens to the Other Ten?"

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.

Exploring the triggering process of a cancer care reform in three Scandinavian countries.

Cancer incidence is increasing, and cancer is a leading cause of death in the Scandinavian countries, and at the same time more efficient but very expensive new treatment options are available. Based on the increasing demand, high expectations and limited resources, crises in public legitimacy of cancer care evolved in the three Scandinavian countries. Similar cancer care reforms were introduced in the period 2007-2015 to address the crisis. In this article we explore processes triggering these reforms in countries with similar and well-developed health care systems. The common objective was the need to reduce time from referral to start treatment, and the tool introduced to accomplish this was integrated care pathways for cancer diagnosis, that is Cancer Patient Pathways. This study investigates the process by drawing on interviews with key actors and public documents. We identified three main logics in play; the economic-administrative, the medical and the patient-related logic and explored how institutional entrepreneurs skillfully aligned these logics. The article contributes by describing the triggering processes on politically initiated similar reforms in the three countries studied and also contributes to a better understanding on the orchestrating of politically initiated health care reforms with the intention to change medical practice in hospitals.

Sensations, symptoms, and then what? Early bodily experiences prior to diagnosis of lung cancer.

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.

Experiencing improved assessment and control of pain in end-of-life care when using the Abbey Pain Scale systematically.

Aim: To describe staff's reflections on aspects influencing pain assessment at end-of-life (EoL) care in nursing homes before and after the implementation of the Abbey Pain Scale (APS). Background: People with cognitive impairment in the EoL care often suffer from underdiagnosed and undertreated pain due to the lack of knowledge and guidelines for systematic pain assessment. Methods: Semi-structured focus group interviews were conducted and analysed using qualitative content analysis. Results: The staff described their experiences before the implementation of APS as striving to achieve control of pain by trusting in themselves and the team, while the experiences after the implementation of APS were described as improving symptom control with remaining weak confidence in the team. Conclusions: Implementation of APS was experienced as improving systematic pain assessment. Efforts to establish clear routines and improve confidence in the care team would be prioritized to optimize pain assessment and pain relief in EoL care.