| 1. |
- Andersson, Andreas, et al.
(författare)
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Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden
- 2020
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Ingår i: Hereditary Cancer in Clinical Practice. - : Springer Science and Business Media LLC. - 1731-2302 .- 1897-4287. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Targeted surveillance of at-risk individuals in families with increased risk of hereditary cancer is an effective prevention strategy if relatives are identified, informed and enrolled in screening programs. Despite the potential benefits, many eligible at-risk relatives remain uninformed of their cancer risk. This study describes the general public's opinion on disclosure of hereditary colorectal cancer (CRC) risk information, as well as preferences on the source and the mode of information. Methods A random sample of the general public was assessed through a Swedish citizen web-panel. Respondents were presented with scenarios of being an at-risk relative in a family that had an estimated increased hereditary risk of CRC; either 10% (moderate) or 70% (high) lifetime risk. A colonoscopy was presented as a preventive measure. Results were analysed to identify significant differences between groups using the Pearson's chi-square (chi(2)) test. Results Of 1800 invited participants, 977 completed the survey (54%). In the moderate and high-risk scenarios, 89.2 and 90.6% respectively, would like to receive information about a potential hereditary risk of CRC (chi 2,p = .755). The desire to be informed was higher among women (91.5%) than men (87.0%, chi 2,p = .044). No significant differences were found when comparing different age groups, educational levels, place of residence and having children or not. The preferred source of risk information was a healthcare professional in both moderate and high-risk scenarios (80.1 and 75.5%). However, 18.1 and 20.1% respectively would prefer to be informed by a family member. Assuming that healthcare professionals disclosed the information, the favoured mode of information was letter and phone (38.4 and 33.2%). Conclusions In this study a majority of respondents wanted to be informed about a potential hereditary risk of CRC and preferred healthcare professionals to communicate this information. The two presented levels of CRC lifetime risk did not significantly affect the interest in being informed. Our data offer insights into the needs and preferences of the Swedish population, providing a rationale for developing complementary healthcare-assisted communication pathways to realise the full potential of targeted prevention of hereditary CRC.
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| 2. |
- Andertun, Sara, et al.
(författare)
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Ebola virus disease : caring for patients in Sierra Leone - a qualitative study
- 2017
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 73:3, s. 643-652
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this study was to describe Norwegian healthcare staffs' experiences of participating in care of patients with Ebola virus disease in Sierra Leone.BACKGROUND: Ebola is one of the most feared viruses known. Ebola virus disease is highly contagious with high mortality. The few qualitative studies made on experiences among healthcare professionals have highlighted problems as lack of protective resources, insufficient personnel and risk of societal stigmatization.DESIGN: Descriptive study with qualitative approach.METHOD: Individual narrative and focus group interviews were obtained during 2015 with eight nurses and one physician who had worked in Ebola care in Sierra Leone. The interviews were analysed using qualitative content analysis.RESULT: The analysis resulted in the two themes: 'Experiencing security by learning to manage risks'; and 'Developing courage and growth by facing personal fears'. Subthemes were: 'Relying on safeguard actions', 'Managing risk of contagion', 'Developing strategies for care despite risks', 'Constantly reminded of death', 'Successively defeating fears' and last, 'Increasing motivation through meaningfulness'. The participants described the reliance on training, organized effort, strict guidelines and equipment. They were respectful of the risk of transmission, made risk assessments, took responsibility, handled risky situations and were reminded of suffering and death.CONCLUSION: Despite challenges, the hazardous work with Ebola virus disease patients was experienced as meaningful which was an important motivator. Safe care was central in working with Ebola patients, but the care relation was challenged.
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| 3. |
- Backman Lönn, Beatrice, et al.
(författare)
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Clarifying the role of clinical research nurses working in Sweden, using the clinical trial nursing questionnaire : swedish version
- 2022
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Ingår i: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 9:5, s. 2434-2443
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
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| 5. |
- Backman Lönn, Beatrice, 1974-
(författare)
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The registered nurse as a clinical research nurse
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Clinical research studies are important for the developmentof new treatments in healthcare. The quality of clinical research relies on the competence, skills, and knowledge of the research team. Clinical research nurses (CRNs) are important members of clinical research teams as they are responsible for various tasks specified in study procedures. Internationally, nurses have been engaged as CRNs in in many areas of medicine, such as oncological research, for several decades. However, there is a lack of consensus concerning their professional role and a clear work description is lacking. In Sweden, nurses are becoming increasingly involved in research as CRNs, yet the CRN role is undefined as there is no Swedish national competence description that could guide CRNs’ work tasks, requirements for education, and management of ethical issues. Furthermore, the processof becoming a CRN is not understood. Increasing international research into the CRN role has shown that the role differs between countries.There is a lack of Swedish studies, including studies of the process of transitioning from being a registered nurse (RN) to a CRN. Since consensus is lacking concerning the CRN role in Sweden, we need to explore it further and examine how nursing perspectives are influencing it. The overall aim of this thesis was therefore to explore the professional role of CRNs in Sweden and the transition of RNs to being CRNs.Methods: Both quantitative (studies I and II) and qualitative (studies III and IV) methods were used. The analyses are based on data from questionnaires and individual interviews of CRNs in Sweden. In study I, descriptive statistics and test–retest analyses were used to analyze the validity and reliability of the translated CTNQ-SWE. In study II, descriptive statistics and one-way ANOVA were used to analyze reported work tasks, perceptions, and differences between groups of CRNs. In studies III and IV, qualitative content analysis according to Graneheimet al., (2004) was used to analyze the transition, i.e., becoming and being a CRN.Results: CRNs perform new and diverse work tasks and are often involved throughout the study process, with the greatest activity in data management and the actual conducting and evaluation of clinical studies (e.g., scheduling and performing procedures and tests according to the research protocols). There is seldom any work description or competence framework to guide nurses through the transition to the CRN role, placing them in an uncertain position where they must struggle to adaptiv to their new role and work tasks. To perform these new work activities, CRNs need more support as well as education in research procedures, regulations, and ethics. During the transition, CRNs improve their knowledge of research, regulations, and ethics and increase their experience of clinical research practice and collaboration in networks. They also learn and develop from dealing with challenging situations, such as the informed consent process. Furthermore, problem solving, study requirements, and ethical reasoning are emphasized as challenging. When passing through the different phases of transition to the CRN role, the nurses achieve expanded competence, change didentity, and growing confidence as informal leaders. CRNs also advocate for patient rights and mentor others involved in research, but they simultaneously lack acknowledgement and a formal leadership role.Conclusions and clinical implications: This thesis provides important insights into the CRN role in Sweden. It highlights the transition of RNs to becoming CRNs as well as their experiences of working as and becoming CRNs. The thesis reports that CRNs, overall, seem to be satisfied with their work, but some of their experiences highlight that skills, education, and organizational structures require improvement; forexample, appropriate introduction and support are required during the transition to the CRN role. Ethical challenges call for ongoing discussion in research teams. One conclusion is that CRNs’ competences and tasks need to be clarified. Developing clear competence pathways for nurses to become CRNs, including mentorship and support, could be one way of acknowledging CRNs’ important work, thereby creating a better outlook for high-quality clinical research procedures. Making the CRN professional title more homogeneous nationally and internationally would make comparisons easier. This would clarify CRNs’ work tasks and role in Sweden and extend the nursing perspective on ethics. This thesis adds to a slowly growing body of literature on the CRN role and is relevant to both practitioners and policymakers. Additionally, it illustrates a need to develop both educational and mentoring support aswell as career pathways for RNs to become CRNs, which could improve the quality of clinical research in Sweden.
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| 6. |
- Backman Lönn, Beatrice, et al.
(författare)
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Transitioning to the clinical research nurse role : a qualitative descriptive study
- 2022
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 78:11, s. 3817-3829
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Bernhardson, Britt-Marie, et al.
(författare)
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Sensations, symptoms, and then what? : Early bodily experiences prior to diagnosis of lung cancer
- 2021
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 16:3
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Fisher Pedersen, Anette, et al.
(författare)
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Negative cancer beliefs, recognition of cancer symptoms and anticipated time to help-seeking : an international cancer benchmarking partnership (ICBP) study
- 2018
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Ingår i: BMC Cancer. - : BioMed Central. - 1471-2407 .- 1471-2407. ; 18
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Understanding what influences people to seek help can inform interventions to promote earlier diagnosis of cancer, and ultimately better cancer survival. We aimed to examine relationships between negative cancer beliefs, recognition of cancer symptoms and how long people think they would take to go to the doctor with possible cancer symptoms (anticipated patient intervals).METHODS: Telephone interviews of 20,814 individuals (50+) in the United Kingdom, Australia, Canada, Denmark, Norway and Sweden were carried out using the Awareness and Beliefs about Cancer Measure (ABC). ABC included items on cancer beliefs, recognition of cancer symptoms and anticipated time to help-seeking for cough and rectal bleeding. The anticipated time to help-seeking was dichotomised as over one month for persistent cough and over one week for rectal bleeding.RESULTS: Not recognising persistent cough/hoarseness and unexplained bleeding as cancer symptoms increased the likelihood of a longer anticipated patient interval for persistent cough (OR = 1.66; 95%CI = 1.47-1.87) and rectal bleeding (OR = 1.90; 95%CI = 1.58-2.30), respectively. Endorsing four or more out of six negative beliefs about cancer increased the likelihood of longer anticipated patient intervals for persistent cough and rectal bleeding (OR = 2.18; 95%CI = 1.71-2.78 and OR = 1.97; 95%CI = 1.51-2.57). Many negative beliefs about cancer moderated the relationship between not recognising unexplained bleeding as a cancer symptom and longer anticipated patient interval for rectal bleeding (p = 0.005).CONCLUSIONS: Intervention studies should address both negative beliefs about cancer and knowledge of symptoms to optimise the effect.
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| 9. |
- Fjällström, Petter, et al.
(författare)
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Adopting standardized cancer patient pathways as a policy at different organizational levels in the Swedish health system
- 2023
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Ingår i: Health Research Policy and Systems. - : BioMed Central (BMC). - 1478-4505 .- 1478-4505. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 10. |
- Fjällström, Petter, et al.
(författare)
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CN59 A meeting between existing practices and new ones in primary healthcare : How nurses adjust work routines to using cancer patient pathways
- 2021
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Ingår i: Annals of Oncology. - : Elsevier. - 0923-7534 .- 1569-8041. ; 32:Supplement 5, s. S1277-S1277
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim was to explore how nurses in primary healthcare (PHC) adjust routines using Cancer Patient Pathways (CPP). CPPs are intended to shorten time to diagnosis but unintended consequences can occur for organizations that utilizes them. Furthermore, in Sweden, PHC is the main entrance into healthcare and nursesas first contact, together with physicians’ are important actors for timely diagnosis.Hence, to explore the unintended consequences when using CPPs in PHC is important since it may impact the process of adaption to CPP.Methods: Grounded Theory method was used to collect and analyse qualitative data. Six PHC units were included with a variation in size, staff and location. Data was collected through focus groups with nurses and physicians at each PHC unit, for a total of 41 participants in nine interviews.Results: When previous practices meet new ones, three distinct but connected work routines emerged in PHC and encompassed a dimension ranging from continuing working with existing practice to adapting CPPs in their work. However, two of the work routines were mainly related to nurses and depicted how they continued working broadly with patient needs in the population while adapting CPP to speed up patient flows. Additionally, nurses continued to draw upon their longstanding know-how of prioritizing with alarm symptoms while adapting to work with routines in new ways, while physicians were the ones reorganizing adjusted routines in their units. Lastly, the third work routine generally illustrated physicians dealing with unequal relations in communication with secondary care regarding referral criteria and nurses were not involved in these referrals.Conclusions: PHC units in our study had not been involved in planning the introduction of CPPs, with nurses excluded in particular. Instead, as our results show, nurses developed their own process to manage using CPPs as a way to adjust to the new procedures, with the unintended consequences influencing their process of adaption. Our study suggests that decision-makers in healthcare could make better use of the know-how within PHC, especially nurses expertise, when developing and introducing new tools such as CPPs.
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