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  • 1. Andersen Sand, Rikke
    et al.
    McArtney, John
    Rasmussen, Birgit H.
    Berhardson, Britt-Marie
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Malmström, Marlene
    Ziebland, Sue
    Caring as sharing: Negotiating the moral boundaries of receiving care2020In: Critical Public Health, ISSN 0958-1596, E-ISSN 1469-3682, Vol. 30, no 5, p. 537-576Article in journal (Refereed)
    Abstract [en]

    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.

  • 2.
    Andersson, Andreas
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Hawranek, Carolina
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Öfverholm, Anna
    Ehrencrona, Hans
    Grill, Kalle
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Melin, Beatrice
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Tham, Emma
    Numan Hellquist, Barbro
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Rosén, Anna
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden2020In: Hereditary Cancer in Clinical Practice, ISSN 1731-2302, E-ISSN 1897-4287, Vol. 18, article id 18Article in journal (Refereed)
    Abstract [en]

    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 (χ2) 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 (χ2, p = .755). The desire to be informed was higher among women (91.5%) than men (87.0%, χ2, 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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  • 3.
    Andertun, Sara
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Ebola virus disease: caring for patients in Sierra Leone - a qualitative study2017In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 73, no 3, p. 643-652Article in journal (Refereed)
    Abstract [en]

    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.

  • 4.
    Backman Lönn, Beatrice
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Research & Development, Region Västernorrland, Sundsvall Hospital, Sundsvall, Sweden.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Olofsson, Niclas
    Department of Health Science, Mid Sweden University, Östersund, Sweden.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Styrke, Johan
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Urology and Andrology.
    Clarifying the role of clinical research nurses working in Sweden, using the clinical trial nursing questionnaire: swedish version2022In: Nursing Open, E-ISSN 2054-1058, Vol. 9, no 5, p. 2434-2443Article in journal (Refereed)
    Abstract [en]

    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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  • 5.
    Backman Lönn, Beatrice
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Research & Development, Region Västernorrland, Sundsvall Hospital, Sundsvall, Sweden.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Styrke, Johan
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Urology and Andrology.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Clinical research nurses perceive their role as being like the hub of a wheel without real power: Empirical qualitative research2024In: Nursing Open, E-ISSN 2054-1058, Vol. 11, no 5, article id e2183Article in journal (Refereed)
    Abstract [en]

    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.

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  • 6.
    Backman Lönn, Beatrice
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Styrke, Johan
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Clinical research nurses percieve their role as being like the hub in the wheel without real power: Empirical qualitative researchManuscript (preprint) (Other academic)
  • 7.
    Backman Lönn, Beatrice
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Research & Development, Region Västernorrland, Sundsvall Hospital, Sundsvall, Sweden.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Styrke, Johan
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Urology and Andrology.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Transitioning to the clinical research nurse role: a qualitative descriptive study2022In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 78, no 11, p. 3817-3829Article in journal (Refereed)
    Abstract [en]

    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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  • 8. Bernhardson, Britt-Marie
    et al.
    Tishelman, Carol
    Rasmussen, Birgit H.
    Department of Health Sciences, Lund University, Lund, Sweden; The Institute for Palliative Care, Lund University and Region, Skåne, Sweden.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Malmström, Marlene
    Overgaard Hasle, Trine Laura
    Locock, Louise
    Eriksson, Lars E
    Sensations, symptoms, and then what?: Early bodily experiences prior to diagnosis of lung cancer2021In: PLOS ONE, E-ISSN 1932-6203, Vol. 16, no 3, article id e0249114Article in journal (Refereed)
    Abstract [en]

    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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  • 9. Fisher Pedersen, Anette
    et al.
    Forbes, Lindsay
    Brain, Kate
    Hvindberg, Line
    Nielsen Wulff, Christian
    Lagerlund, Magdalena
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Quaife, Samantha L
    Vedsted, Peter
    Negative cancer beliefs, recognition of cancer symptoms and anticipated time to help-seeking: an international cancer benchmarking partnership (ICBP) study2018In: BMC Cancer, ISSN 1471-2407, E-ISSN 1471-2407, Vol. 18, article id 363Article in journal (Refereed)
    Abstract [en]

    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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  • 10.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Adopting standardized cancer patient pathways as a policy at different organizational levels in the Swedish health system2023In: Health Research Policy and Systems, ISSN 1478-4505, E-ISSN 1478-4505, Vol. 21, no 1, article id 122Article in journal (Refereed)
    Abstract [en]

    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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  • 11.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Merging existing practices with new ones: the adjustment of organizational routines to using cancer patient pathways in primary healthcare2022In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 3Article in journal (Refereed)
    Abstract [en]

    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.

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  • 12.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    CN59 A meeting between existing practices and new ones in primary healthcare: How nurses adjust work routines to using cancer patient pathways2021In: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 32, no Supplement 5, p. S1277-S1277, article id CN59Article in journal (Refereed)
    Abstract [en]

    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.

  • 13.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Reworking routines in primary healthcare: Adapting standarized cancer patient pathways while continuing practice2021In: Ca-PRI Online Conference 2021: Abstracts, 2021, p. 55-55, article id L27Conference paper (Refereed)
    Abstract [en]

    Background: The aim was to explore how primary healthcare centers (PHC) had adjusted working routines using Cancer Patient Pathways (CPP). CPPs are intended to shorten time to diagnosis, improve access to care and reduce inequality in cancer care. In addition to these intended changes, CPPs have unintended consequences for organizations that utilizes them. In Sweden, PHCs are particularly affected because they are the first and main entrance into healthcare and also important actors of CPP for timely diagnosis. When Sweden in 2015 introduced CPPs, there was an opportunity to explore unintended consequences of using CPPs in PHCs.

    Method: Grounded Theory method was used to collect and analyze qualitative data. Six PHCs were included with a variation in size and location. Data was collected through group interviews with nurses and physicians at each PHC, for a total of 41 participants in nine interviews.

    Results: Our analysis resulted in a process consisting of three distinct but connected work routines. Each routine encompassed a dimension ranging from continuing working as usual to adapting CPPs in their work. The PHCs continued working broadly with patient needs while adapting to speeding up patient flows. Additionally, the PHCs continued to be in a position of dependency on secondary care while adapting to “easier” referral of patients. Lastly, the PHCs continued to draw upon their longstanding know-how while adapting to work with alarm symptoms in new ways.

    Conclusion: PHCs in our study had not been involved in planning the introduction of CPPs. Instead, as our results show, the PHCs developed their own process to manage using CPPs as a tool. The process illuminated their adeptness to deal with new tools and procedures. Our study suggests that decision-makers in healthcare could make better use of the know-how within PHCs when developing and introducing new tools such as CPPs.

  • 14.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Carl
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hultstrand, Cecilia
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Reduction in the diagnostic interval after the introduction of cancer patient pathways for colorectal cancer in northern Sweden2023In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 41, no 3, p. 287-296Article in journal (Refereed)
    Abstract [en]

    Objective: To compare the diagnostic interval for patients with colorectal cancer before and after the introduction of cancer patient pathways in northern Sweden.

    Design: A retrospective study comparing two cohorts (2012 and 2018) of patients diagnosed with colorectal cancer before and after the introduction of cancer patient pathways in 2016.

    Setting: Three counties in northern Sweden with large sparsely populated areas and some cities (637143 residents ∼5.1 residents/km2).

    Subjects: Patients were included from the Swedish Cancer Register. Electronic health records reviews were performed and linked to socioeconomic data from Statistics Sweden.

    Main outcome measures: Differences in the diagnostic intervals, the patient intervals and the characteristics associated with the longest diagnostic intervals and investigations starting at the emergency department.

    Results: The two cohorts included 411 patients in 2012 and 445 patients in 2018. The median diagnostic interval was reduced from 47 days (IQI 18–99) to 29 days (IQI 9–74) (p < 0.001) after the introduction of cancer patient pathways in general. Though for the cases of cancer in the right-side (ascended) colon, the reduction of the diagnostic interval was not observed and it remained associated with investigations starting at the emergency department.

    Conclusion: Our results indicate that cancer patient pathways contributed to an improvement in the diagnostic interval for patients with colorectal cancer in general, yet not for patients with cancer in the right-side colon.

    Implication: In general, cancer patient pathways seem to reduce the diagnostic interval for colorectal cancer but it is not a sufficient solution for all colorectal cancer localisations.

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  • 15.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology. Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Patient and health care delays in malignant melanoma2012Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Background: Unlike other cancers, malignant melanoma (MM) is generally visible and can be easily and effectively cured if treated in time. Optimal cure of MM requires early detection, diagnosis, and treatment, which improves prognosis. However, patients as well as the health care organization and its professionals contribute to delayed treatment in various ways.

    Aims and objectives: The general aim of this PhD thesis was to explore reasons for delay in care seeking, diagnosis, and treatment of malignant melanoma. The specific objectives to be addressed were

    • To explore patients’ decision making about seeking care for malignant melanoma
    • To identify specific patterns in the decision-making process to seek care for suspect melanoma, as narrated by women and men
    • To compare self-reported decision making coping styles between men and women in various ages, who live with or without a partner and are diagnosed with various stages of malignant melanoma in northern Sweden.
    • To describe and compare patients diagnosed with MM, depending on their initial contact with care, and with regard to age, sex, and MM type and thickness, and to explore pathways and time intervals between clinics from the initial contact to diagnosis and treatment.

    Methods: In studies I and II, 21 and 30 patients, respectively, were interviewed about their decision making to seek care for MM. Study II focused on gender patterns in this decision making. The interviews were analysed using Grounded Theory (I) and qualitative content analysis (II). Study III included 270 people with MM who completed a translated questionnaire (Melbourne Decision Making Questionnaire) about coping styles in decision making. In study IV the pathways and time delay in health care for 71 people with MM were explored. Studies I and II were qualitative, whereas studies III and IV were quantitative.

    Results: In study I, the insights into severity and feelings of fear and existential threat were identified as key motivators for patients to decide to seek care for a suspected melanoma. Results in study II showed that gender constructions influenced the care-seeking behaviour. Women acknowledged the skin changes and attempted self-care first. They delayed care seeking due to family responsibilities. Men seldom acknowledged the suspicious skin change, but sought care immediately after prompting, and most often complied with relatives’ advice to seek care. Study III showed that men generally scored higher in buck-passing, while women and those living without a partner scored higher in hypervigilance. Participants with nodular melanoma (NM), a rapid-growing form of MM, scored higher in vigilance than those diagnosed as in situ melanoma. No correlation was found between tumour thickness and coping styles. Some differences concerning treatment of MM were found in study IV between people who initially had sought care at primary health care centres (PHC) and those who had sought care at dermatological and specialist clinics (Derm). Thicker tumours as well as NM were more common in the PHC group. A larger proportion of patients from PHCs were primarily excided within the primary health care; however, almost all of them were later referred to surgical clinics for wide excision. Patients within the PHC group also had to wait longer for the registered results of histopathological assessments. In general, women waited a shorter time for primary excision, and older people waited longer for wide excision.

    Conclusions: Time delay of diagnosis and treatment of MM is still common, and crucial to decrease. Future interventions should include gender aspects to influence people to seek care earlier. In health care, time delay could be decreased by facilitating access for patients with suspected skin melanomas, but also by reducing unnecessary referrals. Moreover, organizational changes whereby general practitioners and primary health care nurses are supported in using new technology for faster diagnoses and management of MM in collaboration with specialist clinics should be considered. Easy access and frequently used guidelines for MM could further decrease delay. Lastly, more efficient transfer and registration of laboratory results and referrals could decrease delay and improve patient safety.

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  • 16.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Fallbjörk, Ulrika
    Umeå University, Faculty of Medicine, Department of Nursing.
    Fransson, Per
    Umeå University, Faculty of Medicine, Department of Nursing.
    Åström, Sture
    Umeå University, Faculty of Medicine, Department of Nursing.
    Need of support perceived by patients primarily curatively treated for breast, colorectal, or prostate cancer and close to discharge from hospital - A qualitative study2022In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 31, no 9-10, p. 1216-1227Article in journal (Refereed)
    Abstract [en]

    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.

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  • 17.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hvidberg, Line
    Lin, Yulan
    Donnelly, Conan
    Gavin, Anna
    Lagerlund, Magdalena
    Pedersen, Anette F
    Rasmussen, Birgit H
    Runesdotter, Sara
    Vedsted, Peter
    Tishelman, Carol
    Awareness of sunburn in childhood, use of sunbeds and change of moles in Denmark, Northern Ireland, Norway and Sweden2016In: European Journal of Public Health, ISSN 1101-1262, E-ISSN 1464-360X, Vol. 26, no 1, p. 29-35Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Malignant melanoma (MM) is increasing rapidly in Northern Europe. To reduce incidence and mortality through earlier diagnosis, public awareness of MM is important. Thus, we aim to examine awareness of risk factors and a symptom of MM, and how awareness varies by country and socio-demographic factors in Denmark, Northern Ireland (NI), Norway and Sweden.

    METHODS: Population-based telephone interviews using the 'Awareness and Beliefs about Cancer' measure were conducted in 2011 among 8355 adults ≥50 years as part of the International Cancer Benchmarking Partnership Module 2. Prevalence ratios (PRs) with 95% confidence intervals were calculated.

    RESULTS: In these four countries, lowest awareness was found for 'sunburn in childhood' (63%), whereas awareness was high for 'use of sunbeds' (91%) and 'mole change' (97%). Lack of awareness of 'sunburn in childhood' was more prevalent among respondents from Norway [PR = 1.38 (1.28-1.48)] but less prevalent among respondents from Northern Ireland (NI) [PR = 0.78 (0.72-0.85)] and Sweden [PR = 0.86 (0.79-0.93)] compared with respondents from Denmark. Lack of awareness of 'use of sunbeds' was more prevalent among respondents from Norway [PR = 2.99 (2.39-3.74)], Sweden [PR = 1.57 (1.22-2.00)], and NI [PR = 1.65 (1.30-2.10)] compared with respondents form Denmark. Being a man, age ≥70, living alone, and having lower education, were each independently associated with lack of MM-awareness.

    CONCLUSIONS: The results indicate relatively low awareness of 'sunburn in childhood' as a risk factor for MM, and important disparities in MM-awareness across countries and socio-demographic groups. Improved and more directed initiatives to enhance public MM-awareness, particularly about 'sunburn in childhood', are needed.

  • 18.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Högberg, Cecilia
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Marzo-Castillejo, Mercè
    Research Support Unit Metropolitana Sud, University Institute for Primary Health Care Research IDIAPJordi Gol, Catalan Health Institute, Barcelona, Spain.
    Siliņa, Vija
    Department of Family Medicine, Riga Stradiņš University, Riga, Latvia.
    Sawicka-Powierza, Jolanta
    Department of Family Medicine, Medical University of Białystok, Białystok, Poland.
    Esteva, Magadalena
    Majorca Primary Care Department, Spain; Balearic Islands Health Research Institute (IdISBa), Balearic Islands, Spain.
    Koskela, Tuomas
    Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland; Center of General Practice,Tampere University Hospital, Tampere, Finland.
    Petek, Davorina
    Department of Family Medicine, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia.
    Contreras-Martos, Sara
    Research Support Unit Metropolitana Sud, University Institute for Primary Health Care Research IDIAPJordi Gol, Catalan Health Institute, Barcelona, Spain.
    Mangione, Marcello
    Local Health Authority Committee, Palermo City, Italy.
    Ožvačić Adžić, Zlata
    Department of Family Medicine, University of Zagreb, School of Medicine, Zagreb, Croatia; Health Center Zagreb-Centar, Zagreb, Croatia.
    Asenova, Radost
    Department Urology and General Practice, Medical University of Plovdiv, Plovdiv, Bulgaria.
    Gašparović Babić, Svjetlana
    Croatian Health Insurance Fund, Rijeka, Croatia.
    Brekke, Mette
    Department of Health and Society, General Practice Research Unit, University of Oslo, Oslo, Norway.
    Buczkowski, Krzysztof
    Department of Health and Society, General Practice Research Unit, University of Oslo, Oslo, Norway.
    Buono, Nicola
    Department of Health and Society, General Practice Research Unit, University of Oslo, Oslo, Norway.
    Çifçili, Saliha Serap
    Family Medicine Department, Marmara University Medical School, Istanbul, Turkey.
    Dinant, Geert-Jan
    Department of General Practice, Maastricht University, Maastricht, The Netherlands.
    Doorn, Babette
    Department of General Practice, Maastricht University, Maastricht, The Netherlands.
    Hoffman, Robert D.
    Department of Family Medicine, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel; Department of Family Medicine, Maccabi Healthcare Services, Southern District, Israel.
    Kuodza, George
    Department of Family Medicine and Outpatient Care, Medical Faculty #2, Uzhhorod National University, Uzhgorod, Ukraine.
    Murchie, Peter
    Centre of Academic Primary Care, Institute of Applied Health Sciences, University of Aberdeen, Aberdeen, UK.
    Pilv, Liina
    Institute of Family Medicine and Public Health, University of Tartu, Tartu, Estonia.
    Puia, Aida
    Department of Family Medicine, University of Medicine and Pharmacy, Cluj-Napoca, Romania.
    Rapalavicius, Aurimas
    Family Medicine Department, Lithuanian University of Health Sciences, Kaunas, Lithuania.
    Smyrnakis, Emmanouil
    Laboratory of Primary Health Care, General Practice and Health Services Research, Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Weltermann, Birgitta
    Laboratory of Primary Health Care, General Practice and Health Services Research, Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Harris, Michael
    Institute of Primary Health Care Bern (BIHAM), University of Bern, Bern, Switzerland; College of Medicine & Health, University of Exeter, Exeter, UK.
    Exploring why European primary care physicians sometimes do not think of, or act on, a possible cancer diagnosis: a qualitative study2023In: BJGP Open, E-ISSN 2398-3795, Vol. 7, no 4, article id BJGPO.2023.0029Article in journal (Refereed)
    Abstract [en]

    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.

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  • 19.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundbom, Elisabet
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Brulin, Christine
    Umeå University, Faculty of Medicine, Department of Nursing.
    Schmitt-Egenolf, Marcus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Patients' decision making in seeking care for suspected malignant melanoma2010In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, E-ISSN 1752-9824, Vol. 2, no 2, p. 164-173Article in journal (Refereed)
    Abstract [en]

    Aim. To explore patients' decision making about seeking care for malignant melanoma (MM).

    Background. Unlike other cancers, MM is generally visible and can be easily and cheaply cured if treated in time. It is the delay in diagnosis, most often attributable to the patient rather than to care providers, that results in mortality. Self-examination of suspicious lesions is important, but it is not a guarantee of immediate care-seeking, nor is early detection and increased melanoma awareness associated with early care-seeking.

    Method. During 2009, men (n = 10) and women (n = 11) diagnosed with malignant melanoma were interviewed within two years after excision and the text was analysed according to Grounded Theory.

    Results. The perception of a critical level of severity, feelings of fear and threat were found to be a key motivator for patients to seek care for suspected melanomas; as soon as sufficient insight into the severity of the disease was achieved, the patient reached a turning point and sought care immediately.

    Conclusions. Most of the participants described the process from the discovery of the lesion to the decision to seek care as a time-consuming inner negotiation about the severity of the disease, personal and social considerations, and interactions with the healthcare system.

    Relevance to clinical practice. We analysed the complex reasoning of the patients leading up to the turning point when they sought care. This study illustrates for caregivers the importance of simplifying the pathways to care, emphasising the seriousness of MM, and taking worried patients seriously from their first contact with health care. Health professionals, through their attitudes in contact with patients, can either facilitate or obstruct the patient's decision making process.

  • 20.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundbom, Elisabet
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Schmitt-Egenolf, Marcus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Health care delay in malignant melanoma: various pathways to diagnosis and treatment2014In: Dermatology Research and Practice, ISSN 1687-6105, E-ISSN 1687-6113, p. 294287-Article in journal (Refereed)
    Abstract [en]

    We aimed to describe and compare patients diagnosed with malignant melanoma (MM), depending on their initial contact with care andwith regard to age, sex, andMMtype and thickness, and to explore pathways and time intervals (lead times) between clinics from the initial contact to diagnosis and treatment.The sample from northern Sweden was identified via the Swedish melanoma register. Data regarding pathways in health care were retrieved from patient records. In our unselected population of 71 people diagnosedwith skinmelanoma of SSMandNMtypes, 75%of patients were primarily treated by primary health-care centres (PHCs). The time interval (delay) from primary excision until registration of the histopathological assessment in the medical records was significantly longer in PHCs than in hospital-based and dermatological clinics (Derm). Thicker tumors were more common in the PHC group. Older patients waited longer times for wide excision. Most MM are excised rapidly at PHCs, but some patients may not be diagnosed and treated in time. Delay of registration of results from histopathological assessments within PHCs seems to be an important issue for future improvement. Exploring shortcomings inMMpatients’ clinical pathways is important to improve the quality of care and patient safety.

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  • 21.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lagerlund, Magdalena
    Tishelman, Carol
    Rasmussen Holritz, Birgit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Runesdotter, Sara
    Kända och okända riskfaktorer för cancer bland svenskar2013In: Onkologi i Sverige, ISSN 1653-1582, no 5, p. 36-43Article in journal (Other academic)
    Abstract [sv]

    Sammanfattningsvis identifierades lägre medvetenhet om riskfaktorer för cancer främst  bland dem med lägre utbildning och bland dem i åldersgruppen 50+. Skillnader identifierades även mellan män och kvinnor. Hittills genomförda insatser med syfte att öka kunskapen om  PV verkar otillräckliga(20) och behöver framförallt riktas mot män och grupper med lägre utbildning vilket också bekräftas av andra studier.

    Vissa livsstilsrelaterade riskfaktorer för cancer som alkoholkonsumtion, att äta rött- och förbehandlat kött, lågt intag av frukt och grönsaker, och låg fysisk aktivitet var mindre kända hos allmänheten. Eftersom detta är faktorer som den enskilda individen skulle kunna påverka utgör de goda kandidater för preventionskampanjer.

    En sammanställning av cancerpreventionsåtgärder i Sverige och deras effekt saknas och vi  efterlyser en sådan. Informationskampanjer höjer oftast den generella kunskapen i samhället men effekten kan vara kortvarig och den självuppfattade risken att drabbas av cancer kan förbli låg.

    Våra resultat kan ge en vägledning för att bättre anpassa och rikta information för att nå  lika riskgrupper och höja medvetenhet om cancer.

  • 22.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Norberg, Astrid
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Becoming whole again-Caring for the self in chronic illness-A narrative review of qualitative empirical studies2024In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702Article in journal (Refereed)
    Abstract [en]

    AIM AND OBJECTIVES: 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.

    BACKGROUND: 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.

    DESIGN: A narrative review.

    METHODS: 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.

    RESULTS: 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.

    CONCLUSIONS: 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.

    RELEVANCE TO CLINICAL PRACTICE: 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.

    PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

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  • 23.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rasmussen, Birgit H
    Department of Health Sciences, Lund University, Lund, Sweden.
    Fransson, Per
    Umeå University, Faculty of Medicine, Department of Nursing.
    You Need to Know More to Understand My Scoring on the Survey: Free-Text Comments as Part of a PROM-Survey of Men with Prostate Cancer2016In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 6, no 5, p. 365-375Article in journal (Refereed)
    Abstract [en]

    Prostate cancer and its treatment have long-term implications for men's lives. We aimed to describe the content, extent, and frequency of written comments to the open-ended question, "Further comments?" in the patient-reported outcome measures questionnaire. During the study period, 897 men participated; 372 wrote 747 free-text comments in the questionnaire. These comments were analysed using qualitative content analysis and were grouped into four categories: 1) prostate cancer's influence on health; 2) clarifications of answers to the survey; 3) descriptions of well-being despite the cancer; and 4) experiences of care and the need for contact with health care. The distribution of the comments shifted over time. The open-ended question not only allowed the participants to explain their other responses and describe important aspects of their lives during and after treatment, something not normally covered by a questionnaire, but it also indicated their experiences of health care services along the patients' PC-trajectory. This further raises the issue of including an open-ended item in a forced-choice survey into the ethical realm to ensure that proper care is taken of participants’ answers and thoughts.

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  • 24.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rasmussen, Birgit H
    Overgaard Hasle, Trine L
    Ziebland, Sue
    Qualitative cross-country comparison of whether, when and how people diagnosed with lung cancer talk about cigarette smoking in narrative interviews2018In: BMJ Open, E-ISSN 2044-6055, Vol. 8, no 11, article id e023934Article in journal (Refereed)
    Abstract [en]

    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.

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  • 25.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rasmussen, Birgit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Asa
    Umeå University, Faculty of Medicine, Department of Nursing.
    You never know when your last day will come and your trip will be over - Existential expressions from a melanoma diagnosis.2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 4, p. 355-361Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to further explore expressions of existential experiences by patients diagnosed with malignant melanoma (MM).

    METHOD: Semi-structured interviews were performed consecutively after diagnosis among 30 patients with MM. The methodological approach was inspired by Gadamer's hermeneutic philosophy.

    RESULTS: The analysis of expressions of existential experiences after having been diagnosed with malignant melanoma revealed that it is an existential process that people go through, beginning with feelings of suddenly becoming groundless at the time of the diagnosis, including being empty and in a vacuum, being in chaos and uncertainty and being confronted with one's own death. Next theme searching for solid ground included striving to understand what lies ahead, striving to find a balance in life - fighting, hoping, going on living and striving to prioritize family. The last theme creating islands of solid ground when living with cancer included understanding what is meaningful in life, living in the moment - seizing the day and keeping watch on the body.

    CONCLUSION: On being diagnosed with malignant melanoma, people go through a process where many questions emerge, including an existential turmoil, which health professionals should be aware of to provide these patients with sufficient support.

  • 26.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Schmitt-Egenolf, Marcus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Brulin, Christine
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sundbom, Elisabet
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Hörnsten, Asa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Malignant melanoma: gender patterns in care seeking for suspect marks2011In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 20, no 17-18, p. 2676-2684Article in journal (Refereed)
    Abstract [en]

    Aims and objectives. Gender patterns in self-detection of melanoma are not sufficiently highlighted in the literature. The aim of the study was to identify specific patterns in the decision-making process to seek care for suspect melanoma, as narrated by women and men.

    Background. Females have a more favourable prognosis than males and also a higher level of perceived susceptibility and a higher level of knowledge about melanoma. Women are, furthermore, more prone to participate in screening.

    Method. Thirty patients (15 women and 15 men) with a mean age of 55.5 years and diagnosed with malignant melanoma were interviewed about their decisions to seek care for suspect skin marks. The interviews were transcribed and analysed with qualitative content analysis.

    Results. Care-seeking behaviour for suspect melanoma was influenced by gender constructions. Men seldom or never acknowledged interest in attention to bodily changes, but when they became aware of changes, they often took a quick decision and sought an expert's assessment. Men were compliant with wives' and relatives' advice about seeking care. All women reported that they paid attention to bodily changes, but they often delayed care seeking, due to family responsibilities and emotional struggles. The women also attempted self-care remedies, such as applying ointment, before seeking professional care.

    Conclusions. There are gender-specific patterns that may influence decision making in the care-seeking process. Such patterns are important to identify, since health care professionals must take these factors into account in communicating with men and women.

    Relevance to clinical practice. Nurses and in particular those working in telephone counselling, are often at the frontlines, deciding who can have access to health services. They are ideally placed to tackle the issue of gender constructions in the development of effective health care services.

  • 27.
    Hajdarevic, Senada
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology. Umeå University, Faculty of Medicine, Department of Nursing.
    Schmitt-Egenolf, Marcus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Sundbom, Elisabet
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coping styles in decision making among men and women diagnosed with malignant melanoma2013In: Journal of Health Psychology, ISSN 1359-1053, E-ISSN 1461-7277, Vol. 18, no 11, p. 1445-1455Article in journal (Refereed)
    Abstract [en]

    Early care seeking is important for prognosis of malignant melanoma. Coping styles in decision-making to seek care can relate to prognosis since avoidant strategies could delay care seeking. The aim of this study was to compare self-reported coping styles in decision-making between men and women diagnosed with malignant melanoma. We used the Swedish version of the Melbourne Decision-Making Questionnaire to assess coping styles. Men generally scored higher in buck-passing while women and those living without a partner scored higher in hypervigilance. This knowledge could be used in the development of preventive programmes with intention to reach those who delay care seeking.

  • 28.
    Hawranek, Carolina
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Rosén, Anna
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    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?"2021In: Journal of Personalized Medicine, E-ISSN 2075-4426, Vol. 11, no 11, article id 1191Article in journal (Refereed)
    Abstract [en]

    This study explores perceptions and preferences on receiving genetic risk informationabout hereditary cancer risk in members of the Swedish public. We conducted qualitative contentanalysis 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 interplaybetween the three stakeholders involved in risk disclosure: the individual, healthcare, and therelative at risk. First, there is a genuine will to share risk information that can benefit others, evenif 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 mainresponsibility onto another party. In conclusion, our results reveal a discrepancy between publicexpectations and the actual services offered by clinical genetics. These expectations paired with desirefor a more personalized process and shared decision-making highlight a missing link in today’s riskcommunication and suggest a need for developed clinical routines with stronger healthcare–patientcollaboration. Future research needs to investigate the views of genetic professionals on how toaddress these expectations to co-create a transparent risk disclosure process which can realize the fullpotential of personalized prevention.

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  • 29.
    Hawranek, Carolina
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Maxon, Johan
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Andersson, Andreas
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    van Guelpen, Bethany
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology. Umeå University, Faculty of Medicine, Wallenberg Centre for Molecular Medicine at Umeå University (WCMM).
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Numan Hellquist, Barbro
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Rosén, Anna
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Cancer worry distribution and willingness to undergo colonoscopy at three levels of hypothetical cancer risk - a population-based survey in Sweden2022In: Cancers, ISSN 2072-6694, Vol. 14, no 4, article id 918Article in journal (Refereed)
    Abstract [en]

    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.

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  • 30.
    Hawranek, Carolina
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Rosén, Anna
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    How hereditary cancer risk disclosure to relatives is handled in practice: patient perspectives from a Swedish cancer genetics clinic2024In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 126, article id 108319Article in journal (Refereed)
    Abstract [en]

    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.

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  • 31.
    Hultstrand Ahlin, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    GPs' perspectives of the patient encounter: in the context of standardized cancer patient pathways2020In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 38, no 2, p. 238-247Article in journal (Refereed)
    Abstract [en]

    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.

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  • 32.
    Hultstrand Ahlin, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Unit of Research, Education, and Development, Östersund Hospital.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Negotiating bodily sensations between patients and GPs in the context of standardized cancer patient pathways: an observational study in primary care2020In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 20, no 1, article id 46Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: How interactions during patient-provider encounters in Swedish primary care construct access to further care is rarely explored. This is especially relevant nowadays since Standardized Cancer Patient Pathways have been implemented as an organizational tool for standardizing the diagnostic process and increase equity in access. Most patients with symptoms indicating serious illness as cancer initially start their diagnostic trajectory in primary care. Furthermore, cancer symptoms are diverse and puts high demands on general practitioners (GPs). Hence, we aim to explore how presentation of bodily sensations were constructed and legitimized in primary care encounters within the context of Standardized Cancer Patient Pathways (CPPs).

    METHODS: Participant observations of patient-provider encounters (n = 18, on 18 unique patients and 13 GPs) were carried out at primary healthcare centres in one county in northern Sweden. Participants were consecutively sampled and inclusion criteria were i) patients (≥18 years) seeking care for sensations/symptoms that could indicate cancer, or had worries about cancer, Swedish speaking and with no cognitive disabilities, and ii) GPs who met with these patients during the encounter. A constructivist approach of grounded theory method guided the data collection and was used as a method for analysis, and the COREQ-checklist for qualitative studies (Equator guidelines) were employed.

    RESULTS: One conceptual model emerged from the analysis, consisting of one core category Negotiating bodily sensations to legitimize access, and four categories i) Justifying care-seeking, ii) Transmitting credibility, iii) Seeking and giving recognition, and iv) Balancing expectations with needs. We interpret the four categories as social processes that the patient and GP constructed interactively using different strategies to negotiate. Combined, these four processes illuminate how access was legitimized by negotiating bodily sensations.

    CONCLUSIONS: Patients and GPs seem to be mutually dependent on each other and both patients' expertise and GPs' medical expertise need to be reconciled during the encounter. The four social processes reported in this study acknowledge the challenging task which both patients and primary healthcare face. Namely, negotiating sensations signaling possible cancer and further identifying and matching them with the best pathway for investigations corresponding as well to patients' needs as to standardized routines as CPPs.

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  • 33.
    Hultstrand Ahlin, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hörnsten, Carl
    Psychiatry, University Hospital of Umeå, Umeå, Sweden.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Östersund Hospital.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Fjällström, Petter
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    The association between sociodemographic factors and time to diagnosis for colorectal cancer in northern Sweden2022In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 31, no 6, article id e13687Article in journal (Refereed)
    Abstract [en]

    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.

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  • 34.
    Hultstrand Ahlin, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Wishing to be perceived as a capable and resourceful person: A qualitative study of melanoma patients’ experiences of the contact and interaction with healthcare professionals2019In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 28, no 7–8, p. 1223-1232Article in journal (Refereed)
    Abstract [en]

    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.

  • 35.
    Hultstrand, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Shifting between roles of a customer and a seller – patients’ experiences of the encounter with primary care physicians when suspicions of cancer exist2021In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 16, no 1, article id 2001894Article in journal (Refereed)
    Abstract [en]

    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.

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  • 36.
    Hultstrand, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hörnsten, Carl
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Fjällström, Petter
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Socioeconomic factors do not influence time to diagnosis for colorectal cancer in northern SwedenManuscript (preprint) (Other academic)
  • 37. Hvidberg, Line
    et al.
    Lagerlund, Magdalena
    Pedersen, Anette F
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Tishelman, Carol
    Vedsted, Peter
    Awareness of cancer symptoms and anticipated patient interval for healthcare seeking. A comparative study of Denmark and Sweden2016In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 55, no 7, p. 917-924Article in journal (Refereed)
    Abstract [en]

    Background Recent 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.

    Method Data 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.

    Results Danish 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.

    Conclusion Somewhat 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.

  • 38.
    Isaksson, Ulf
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Abramsson, MaiGreth
    Umeå University, Faculty of Medicine, Department of Nursing.
    Stenvall, Jessica
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hornsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Diabetes empowerment and needs for self-management support among people with type 2 diabetes in a rural inland community in northern Sweden2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 3, p. 521-527Article in journal (Refereed)
    Abstract [en]

    Background: Self-management among people with T2D includes being responsible for attaining a blood sugar level within the normal range, eating healthy food, exercising and following prescriptions for medication, something that may need support. In rural areas, access to health care may be limited, and support from family members becomes important.

    Aim: The aim of this study was to describe perceptions and associations of diabetes empowerment, self-management ability and needs of self-management support among people with T2D in a northern rural community of Sweden.

    Method: People with T2D (n = 159) living a rural municipality in northern Sweden answered the SWE-DES-23 questionnaire and additional questions concerning self-management and needs for self-management support.

    Results: A higher diabetes empowerment was associated with longer diabetes duration and support from healthcare professionals and relatives. Women rated a need for self-management support significantly higher than men did. Nonretired persons rated a significantly higher need for self-management support and a lower perception of support from healthcare professionals compared to retired persons. Cohabitant persons had a significantly higher perception of support from relatives and also estimated a higher need for relatives’ involvement in clinical visits compared to persons living alone. Both the newly diagnosed and also those people with a diabetes duration of 10–15 years rated a higher need for group support. Higher self-awareness and readiness to change were apparent among people with short and long diabetes duration. Furthermore, self-management ability, support from healthcare professionals and from relatives and lastly diabetes duration was associated with diabetes empowerment.

    Conclusion: Not only people newly diagnosed with T2D should be offered patient-centred group support, strengthening patient empowerment. For future, family-focused care and education and training in person-centred care among diabetes specialist nurses is recommended.

  • 39.
    Isaksson, Ulf
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Jutterström, Lena
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Validity and reliability testing of the Swedish version of Melbourne Decision Making Questionnaire2014In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 2, p. 405-412Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Melbourne Decision-Making Questionnaire (MDMQ) is an attempt to capture and measure coping strategies that people use. The instrument had not previously been translated into Swedish. The aim of this study was to evaluate validity and reliability of the Swedish version of the MDMQ.

    METHOD: A Swedish translation was performed and back-translated. A group of five pilot readers evaluated content validity. The translated questionnaire was tested among 735 patients, healthcare workers, healthcare students and teachers. A parallel analysis (PA), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed.

    RESULT: An initial EFA with a four-factor solution showed a low concordance with the original 22-item four-factor model with a very low Cronbach's alpha in one of the dimensions. However, a second EFA with a three-factor solution showed a good model fit for the Swedish translation of the Melbourne Decision-Making Questionnaire (MDMQ-S) with a satisfactory Cronbach's alpha. A CFA showed a goodness of fit after deleting six items.

    CONCLUSION: After testing the MDMQ-S, we found support for validity and reliability of the instrument. We found the 16-item version of MDMQ-S to be satisfactory concerning the subscales vigilance, procrastination and buck-passing. However, we found no support that the hypervigilance dimension could be measured by the MDMQ-S.

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  • 40.
    Koskela, Tuomas H.
    et al.
    Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland;Center of General Practice, Tampere University Hospital, Tampere, Finland.
    Esteva, Magdalena
    Health Research Institute of the Balearic Islands (IdISBa), Palma, Spain.
    Mangione, Marcello
    Local Health Authority Committee, Palermo City, Italy.
    Contreras Martos, Sara
    Research Support Unit Metropolitana Sud, University Institute for Primary Health Care Research IDIAPJordi Gol, Catalan Health Institute, Barcelona, Spain.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Högberg, Cecilia
    Department of Public Health and Clinical Medicine, Unit of Research, Education and Development Östersund, Umeå University, Umeå, Sweden.
    Marzo-Castillejo, Mercè
    Research Support Unit Metropolitana Sud, University Institute for Primary Health Care Research IDIAPJordi Gol, Catalan Health Institute, Barcelona, Spain.
    Sawicka-Powierza, Jolanta
    Department of Family Medicine, Medical University of Białystok, Białystok, Poland.
    Siliņa, Vija
    Department of Family Medicine, Riga Stradiņš University, Riga, Latvia.
    Harris, Michael
    Institute of Primary Health Care Bern (BIHAM), University of Bern, Bern, Switzerland;College of Medicine &amp; Health, University of Exeter, Exeter, UK.
    Petek, Davorina
    Department of Family Medicine, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia.
    What would primary care practitioners do differently after a delayed cancer diagnosis?: Learning lessons from their experiences2023In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, National Library of Medicine, 2024 Mar;42(1): 123-131, Vol. 42, no 1, p. 123-131Article in journal (Refereed)
    Abstract [en]

    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.

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  • 41. Lagerlund, Magdalena
    et al.
    Hvidberg, Line
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Fischer Pedersen, Anette
    Runesdotter, Sara
    Vedsted, Peter
    Tishelman, Carol
    Awareness of risk factors for cancer: a comparative study of Sweden and Denmark2015In: BMC Public Health, E-ISSN 1471-2458, Vol. 15, no 1, article id 1156Article in journal (Refereed)
    Abstract [en]

    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.

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  • 42.
    Ludvigsson, Carola
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Arctic Research Centre at Umeå University.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Experiencing improved assessment and control of pain in end-of-life care when using the Abbey Pain Scale systematically2020In: Nursing Open, E-ISSN 2054-1058, Vol. 7, no 6, p. 1798-1806Article in journal (Refereed)
    Abstract [en]

    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.

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  • 43.
    Lundell, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Harrison, Samantha L.
    Teesside University, School of Health and Life Sciences, Centuria Building, Middlesbrough, UK.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Swedish translation and psychometric testing of the self-conscious emotions in COPD questionnaire2024In: Respiratory Medicine, ISSN 0954-6111, E-ISSN 1532-3064, Vol. 226, article id 107624Article in journal (Refereed)
    Abstract [en]

    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.

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  • 44. MacArtney, John
    et al.
    Malmström, Marlene
    Overgaard Nielsen, Trine
    Evans, Julie
    Bernhardson, Britt-Marie
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Chapple, Alison
    Eriksson, Lars E.
    Locock, Louise
    Rasmussen, Birgit
    Vedsted, Peter
    Tishelman, Carol
    Sand Andersen, Rikke
    Ziebland, Sue
    Patients’ initial steps to cancer diagnosis in Denmark, England and Sweden: what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?2017In: BMJ Open, E-ISSN 2044-6055, Vol. 7, no 11, article id e018210Article in journal (Refereed)
    Abstract [en]

    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.

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  • 45. Malmström, Marlene
    et al.
    Rasmussen, Birgit H.
    Bernhardson, Britt-Marie
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Eriksson, Lars E.
    Andersen, Rikke Sand
    MacArtney, John I.
    It is important that the process goes quickly, isn't it?": A qualitative multi-country study of colorectal or lung cancer patients' narratives of the timeliness of diagnosis and quality of care2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 34, p. 82-88Article in journal (Refereed)
    Abstract [en]

    Purpose: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden.

    Method: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer. Data were collected via semi-structured narrative interviews and analysed using a thematic approach.

    Results: Participants’ accounts of quality of care were closely related to how quickly (or not) diagnosis, treatment and/or healthcare processes went. Kinetic metaphors as a description of care (such as treadmill) could be interpreted positively as participants were willing to forgo some degree of control and accept disruption to their lives to ensure more timely care. Drawing on wider cultural expectations of the benefits of diagnosing and treating cancer quickly, some participants were concerned that the waiting times between interventions might allow time for the cancer to grow.

    Conclusions: Initiatives emphasising the timeliness of diagnosis and treatment are reflected in the ways some patients experience their care. However, these accounts were open to further contextualisation about what speed of healthcare processes meant for evaluating the quality of their care. Healthcare professionals could therefore be an important patient resource in providing reassurance and support about the timeliness of diagnosis or treatment.

  • 46.
    Milavec Kapun, Marija
    et al.
    University of Ljubljana, Ljubljana, Slovenia.
    Meglič, Nina
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Comparison of community health nurses' preventive home visits to older adults in Sweden and Slovenia: A literature review: [Primerjava preventivnih obravnav starejših odraslih v patronažnem varstvu med Švedsko in Slovenijo: pregled literature]2022In: Obzornik zdravstvene nege, ISSN 1318-2951, Vol. 56, no 3, p. 209-221Article, review/survey (Refereed)
    Abstract [en]

    Introduction: Community health nurses contribute significantly to better health, well-being and independence of older adults. The aim of the study is to compare preventive services for older adults in community health care between Sweden and Slovenia.

    Methods: Literature review and document analysis were used to conduct a qualitative comparative analysis. Literature was retrieved from the MEDLINE, CINAHL and COBIB databases. An analysis of documents such as sectoral legal bases, guidelines and expert recommendations in Slovenia and Sweden was also conducted. The analysis included sources related to preventive services for older adults living at home published between January 2000 and December 2020 in Slovene, English or Swedish.

    Results: Twenty units of literature were included in the review. Four comparative factors were identified: system and legal basis, organisation and scope, providers, and content. In Slovenia, all older adults are entitled to the same range of preventive services. Compared to Sweden, the organisation of community health care in Slovenia is more centralised, all older adults are entitled to the same scope of preventive health visits, while the level of education and scope of competences of healthcare providers are lower. In both countries, the content of preventive home visits to older adults is similar.

    Discussion and conclusion: In Slovenia, community health nurses with additional knowledge could prescribe medical devices and medications form a limited list, as well as coordinate care. This would allow them to act more independently in patients' home environment. Further development of more personalised preventive services for older adults depends on research, resource provision and consideration of the organisational culture.

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  • 47.
    Mæhle, Per Magnus
    et al.
    Department of Health and Society, Faculty of Medicine, University of Oslo, Norway; Division of Cancer Medicine, Comprehensive Cancer Centre, Oslo University Hospital, Norway.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Håland, Erna
    Department of Education and Lifelong Learning, NTNU, Trondheim, Norway.
    Aarhus, Rikke
    Diagnostic Centre, University Research Clinic for Innovative Patient Pathways, Silkeborg Regional Hospital, Denmark.
    Smeland, Sigbjørn
    Division of Cancer Medicine, Comprehensive Cancer Centre, Oslo University Hospital, Norway; Department of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
    Mørk, Bjørn Erik
    Department of Strategy and Entrepreneurship, Norwegian Business School, Oslo, Norway; Warwick Business School, University of Warwick, Coventry, United Kingdom.
    Exploring the triggering process of a cancer care reform in three Scandinavian countries2021In: International Journal of Health Planning and Management, ISSN 0749-6753, E-ISSN 1099-1751, Vol. 36, no 6, p. 2231-2247Article in journal (Refereed)
    Abstract [en]

    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.

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  • 48.
    Sahlén, Klas-Göran
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Isaksson, Ulf
    Östlund, Ulrika
    Lämås, Kristina
    Lindgren, Britt-Marie
    Enarsson, Per
    Juthberg, Christina
    Isaksson, Rose Marie
    Hajdarevic, Senada
    Saveman, Brittinger
    Nursing research in Sweden2014In: The Japanese Journal of Nursing Research, ISSN 0022-8370, Vol. 47, no 2, p. 126-133Article in journal (Refereed)
  • 49.
    Sjöström, Anna E.
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    eHealth literacy and health-related internet use among Swedish primary healthcare visitorsManuscript (preprint) (Other academic)
  • 50.
    Sjöström, Anna E.
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Kristjánsdóttir, Ólöf
    Faculty of Nursing, University of Iceland, Reykjavik, Iceland.
    Castor, Charlotte
    Department of Health Sciences, Lund University, Lund, Sweden.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    The Swedish version of the eHealth literacy questionnaire: Translation, cultural adaptation, and validation study2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e43267Article in journal (Refereed)
    Abstract [en]

    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.

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