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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 care2019In: Critical Public Health, ISSN 0958-1596, E-ISSN 1469-3682Article 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.
    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.

  • 3. 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.

  • 4.
    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.

  • 5.
    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.

  • 6.
    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.

  • 7.
    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.

  • 8.
    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.

  • 9.
    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.

  • 10.
    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, ISSN 2044-6055, 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.

  • 11.
    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.

  • 12.
    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.

  • 13.
    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.

  • 14.
    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.
    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 professionals2018In: 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.

  • 15. 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.

  • 16.
    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.

  • 17.
    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.

  • 18. 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, ISSN 1471-2458, 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.

  • 19. 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, ISSN 2044-6055, 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.

  • 20. 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.

  • 21.
    Sjöström, Anna E.
    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.
    Emmoth, Agneta
    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.
    Primary Health Care Nurses’ Experiences of Consultations With Internet-Informed Patients: Qualitative Study2019In: JMIR Nursing, ISSN 2562-7600, Vol. 2, no 1, article id e14194Article in journal (Refereed)
    Abstract [en]

    Background: Most people in modern societies now use the Internet to obtain health-related information. By giving patients knowledge, digital health information is considered to increase patient involvement and patient-centered interactions in health care. However, concerns are raised about the varying quality of health-related websites and low health literacy in the population. There is a gap in the current knowledge of nurses’ experiences with Internet-informed patients.

    Objective: The objective of this study was to explore primary health care nurses’ experiences of consultations with patients who present health-related information from the Internet.

    Methods: This is a qualitative study based on interviews with 9 primary health care nurses. Data were analyzed using qualitative content analysis. Results are reported according to the consolidated criteria for reporting qualitative research guidelines.

    Results: The phenomenon of Internet-informed patients was considered to change the usual rules in health care, affecting attributes and actions of patients, patterns of interactions in consultations, and roles of nurses and patients. Three categories were identified: (1) Facing the downsides of Googling, (2) Patients as main actors, and (3) Nurse role challenged. Although the benefits of health-related Internet information were described, its negative consequences were emphasized overall. The problems were mainly ascribed to inaccurate Internet information and patients’ inability to effectively manage the information.

    Conclusions: Our study suggests ambivalent attitudes among nurses toward health-related Internet information. In order to promote equitable care in the digital era, increased awareness in health care about useful strategies for overcoming the difficulties and embracing the benefits of conferring with Internet-informed patients seems to be a legitimate goal.

  • 22. Tishelman, Carol
    et al.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Rasmussen, Birgit H.
    Umeå University.
    Carlander, Ida
    Space and Place for End-of-Life Care: A Photo-Elicitation Study2014In: Journal of Palliative Care, ISSN 0825-8597, Vol. 30, no 3, p. 220-220Article in journal (Refereed)
  • 23. Tishelman, Carol
    et al.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics, Medical Management Center, Karolinska Institutet, SE-171 77 Stockholm Sweden.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rasmussen, Birgit H
    Goliath, Ida
    Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life.2016In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 168, p. 120-129Article in journal (Refereed)
    Abstract [en]

    The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: "what is this picture of?" and "why is it meaningful to you?" The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with one's daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using one's body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with one's past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in one's surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development.

  • 24. Ziebland, Sue
    et al.
    Rasmussen, Birgit
    MacArtney, John
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sand Andersen, Rikke
    How wide is the Goldilocks Zone in your health system?2019In: Journal of Health Services Research and Policy, ISSN 1355-8196, E-ISSN 1758-1060, Vol. 24, no 1, p. 52-56Article in journal (Refereed)
    Abstract [en]

    In astrophysics, the 'Goldilocks Zone' describes the circumstellar habitable zone, in which planets, sufficiently similar to Earth, could support human life. The children's story of Goldilocks and the Three Bears, one of the most popular fairy tales in the English language, uses this metaphor to describe conditions for life that are neither too hot nor too cold and neither too close to the sun nor too far from its warmth. We propose that the 'Goldilocks Zone' also offers an apt metaphor for the struggle that people face when deciding if and when to consult a health care provider with a possible health problem. Drawing on decades of research in Denmark, England and Sweden on people's accounts of their experiences of accessing health care, this essay considers the ambivalence of health care seeking that individuals face in identifying when it is 'just right' to consult a general practitioner and the steps that health systems and individual clinicians might take to widen the zone.

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