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  • 1.
    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.

  • 2.
    Audulv, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Norbergh, Karl-Gustaf
    Asplund, Kenneth
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    An ongoing process of inner negotiation: a grounded theory study of self-management among people living with chronic illness2009In: Journal of nursing and healthcare of chronic illness, Vol. 1, no 4, p. 283-293Article in journal (Refereed)
    Abstract [en]

    Aim. The aim of this study was to better understand the main concern of self-management processes among people with chronic illness.

    Background. One aspect of living with chronic illness is self-management that can reduce the illness impact on daily life and promote future health. Although factors that influence self-management have been identified in previous research, little attention has been brought to the process of making self-management decisions. In clinical settings, use of a theory could facilitate patient-empowering approaches.

    Method. The data collection for this Grounded Theory was mostly conducted in 2006. Data were collected by interviews with 26 adults with a variety of chronic illnesses, including rheumatoid arthritis, diabetes mellitus, inflammatory bowel syndrome, multiple sclerosis, ischaemic heart disease and chronic kidney failure.

    Results. Individuals are conflicted by competing preferences when taking decisions about self-management. Consequently, the decision-making process can be understood as an ongoing inner negotiation between different incompatible perspectives, e.g. social needs vs. medical needs. The process of negotiating self-management starts with the individual's considering beliefs about health and illness, which make the individual face illness threats and the need for self-management. Several aspects influence negotiating self-management namely, assessing effects of self-management; evaluating own capacity; perceiving normality or stigmatisation; and experiencing support and external resources. The process has been demonstrated in a model.

    Conclusions. The process of negotiating self-management is an ongoing inner debate rather than a one-time decision. This opens up new ways of understanding, and communicating with, patients. The described model also links behavioural theories and research findings in a comprehensive understanding.

    Relevance to clinical practice. This model could be applicable as a communication tool for health-care providers in identifying barriers to, and resources in, self-management behaviour among individuals with chronic illness.

  • 3.
    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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  • 4.
    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)
  • 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.
    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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  • 6.
    Boström, Eva
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Asa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Stenlund, Hans
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Role clarity and role conflict among Swedish diabetes specialist nurses2013In: Primary care diabetes, ISSN 1878-0210, Vol. 7, no 3, p. 207-212Article in journal (Refereed)
    Abstract [en]

    AIM: To explore diabetes specialist nurses (DSNs)' perceptions of their role in terms of clarity, conflict and other psychosocial work aspects.

    METHODS: A cross-sectional study was conducted among DSNs in a county in northern Sweden. The DSNs answered the Nordic Questionnaire of Psychological and Social Factors at Work (QPS Nordic) about psychosocial aspects of their work. Statistical analysis compared DSNs with a reference group of different health professionals. Correlations between role clarity, role conflict, and other variables were analysed.

    RESULTS: The DSNs perceived more, and higher, job demands, including quantitative, decision-making and learning demands, but also more positive challenges at work compared with the reference group. Role clarity correlated with experiences of health promotion, perception of mastery, co-worker support, and empowering leadership, while role conflict correlated with quantitative and learning demands.

    CONCLUSIONS: The DSNs perceived high demands but also positive challenges in their work. Their role expectations correlated with several psychosocial work aspects. It is important that DSNs should be presented with positive challenges as meaningful incentives for further role development and enhanced mastery of their work.

  • 7.
    Boström, Eva
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Persson, Chatrin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rising, Inger
    Santamäki Fischer, Regina
    Umeå University, Faculty of Medicine, Department of Nursing.
    Clinical challenges and ongoing role changes for primary health-care nurses2012In: British Journal of Community Nursing, ISSN 1462-4753, E-ISSN 2052-2215, Vol. 17, no 2, p. 68-74Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the perceptions of primary health-care nurses (PHNs) about clinical demands and future challenges.

    METHOD: Qualitative content-analysis of open questions from a questionnaire. A total of 121 PHNs from health-care districts in northern Sweden filled in a questionnaire during a mandatory educational day.

    RESULTS: Key issues that were raised included: defending the specific professional role of the PHNs; strengthening their self-governance and authority; and ensuring adequate care in the future through education that focuses more on nursing practice than on academic work.

    CONCLUSION: To ensure that the role of the PHN continues to develop, it is necessary to enable them to articulate, discuss, and evaluate their profession and to learn, in concrete forms, how to implement science in clinical practice.

  • 8.
    Boström, Eva
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Bent
    Umeå University, Faculty of Medicine, Department of Nursing.
    Graneheim, Ulla H.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Interaction between diabetes specialist nurses and patients during group sessions about self-management in type 2 diabetes2014In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 94, no 2, p. 187-192Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to explore the interaction between diabetes specialist nurses (DSNs) and patients with type 2 diabetes (T2D) during group sessions about self-management. Methods: Ten DSNs and 44 patients were observed during group sessions about self-management, and thereafter the observations were analyzed using qualitative content analysis. Results: The interaction was characterized by three themes: becoming empowered, approaching each other from different perspectives, and struggling for authority. The interaction was not a linear process, but rather a dynamic process with distinct episodes that characterized the content of the sessions. Conclusion: It is important to achieve an interaction that is patient-centered, where the DSN is aware of each patient's individual needs and avoids responding to patients in a normative way. A satisfying interaction may strengthen patients' self-management, and also may strengthen the DSNs in their professional performance. Practice implications: Authority struggles between patients and DSNs could be a prerequisite for patients to become autonomous and decisive in self-management. DSNs might benefit from an increased awareness about this issue, because they can better support patients if they do not perceive authority struggles as threats to their professional role. (C) 2013 Elsevier Ireland Ltd. All rights reserved.

  • 9.
    Boström, Eva
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Egan Sjölander, Annika
    Umeå University, Faculty of Arts, Department of culture and media studies.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Diabetes specialist nurses' perceptions of their multifaceted role2012In: European Diabetes Nursing, ISSN 1551-7853, E-ISSN 1551-7861, Vol. 9, no 2, p. 39-44Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to explore diabetes specialist nurses' (DSNs') perceptions of their professional role in diabetes care.

    Exploratory interviews were used to elicit DSNs' perceptions of their professional role. Twenty-nine DSNs working in 23 primary health care centres in northern Sweden were interviewed in focus groups. Data were analysed using qualitative content analysis.

    The DSNs described their profession as encompassing five major roles: ‘expert’, ‘fosterer’, ‘executive’, ‘leader’, and ‘role model’. Challenges interpreted as role ambiguities included feeling uninformed, fragmented, resigned, pressed for time, and self-reproachful.

    The profession of DSN was interpreted as multifaceted, with various roles and role ambiguities. Patient-centred care and empowerment, which are recommended in diabetes care, can be difficult to achieve when DSNs experience role ambiguity.

    Lack of clarity about role demands and difficulty in reconciling different roles may have a negative impact on DSNs' attitudes in clinical encounters and could inhibit patient-centred care. The development of the DSN profession requires improved awareness of the DSN's professional role in the clinical encounter, not only to improve the care of patients with diabetes, but also to retain these professionals.

  • 10.
    Boström, Eva
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Interaction between diabetes specialist nurses and patients during group sessions about self-management in type 2 diabetes2014In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 94, no 2, p. 187-192Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to explore the interaction between diabetes specialist nurses (DSNs) and patients with type 2 diabetes (T2D) during group sessions about self-management.

    Methods: Ten DSNs and 44 patients were observed during group sessions about self-management, and thereafter the observations were analyzed using qualitative content analysis.

    Results: The interaction was characterized by three themes: becoming empowered, approaching each other from different perspectives, and struggling for authority. The interaction was not a linear process, but rather a dynamic process with distinct episodes that characterized the content of the sessions.

    Conclusion: It is important to achieve an interaction that is patient-centered, where the DSN is aware of each patient's individual needs and avoids responding to patients in a normative way. A satisfying interaction may strengthen patients' self-management, and also may strengthen the DSNs in their professional performance.

    Practice implications: Authority struggles between patients and DSNs could be a prerequisite for patients to become autonomous and decisive in self-management. DSNs might benefit from an increased awareness about this issue, because they can better support patients if they do not perceive authority struggles as threats to their professional role.

  • 11.
    Boström, Eva
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lehuluante, Abraraw
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Patient-centred care in type 2 diabetes: an altered professional role for diabetes specialist nurses2014In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 4, p. 675-682Article in journal (Refereed)
    Abstract [en]

    Little research has been done to try to understand how patient-centred care is understood and practised by healthcare professionals specialising in patients with diabetes. Experiences from patient-centred practices need to be highlighted as a way of motivating diabetes specialist nurses to take a patient-centred approach. The aim of this study was to describe diabetes specialist nurses' experiences of practising patient-centred care in the context of a type 2 diabetes intervention. The study design was descriptive and used qualitative methods. Focus group interviews complemented by individual semi-structured interviews were analysed by qualitative content analysis. The main theme of the diabetes specialist nurses' experiences of practising patient-centred care was an altered professional role. The main theme was based on two themes: ambivalence towards practising patient-centred care and enriched relationships with the patients. The ambivalence towards practising patient-centred care was based on the three subthemes: a position of withdrawn expertise, inconvenience of changing routines and insights that patient-centred care is difficult but possible. Their experiences of enriched relationships with patients were based on the two subthemes: courage to discuss the severity of diabetes and increased engagement in patients' daily lives. The diabetes specialist nurses' experiences with practising patient-centred care included doubts about their ability to practise in such a way and about the feasibility of such care. At the same time, their enriched relationships with patients were seen as an opportunity to engage in patients' lives. Training and support for practising patient-centred care may improve diabetes specialist nurses skills in patient-centred care and self-management support in type 2 diabetes.

  • 12.
    Edvardsson, Kristina
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Public Health Sciences.
    Edvardsson, David
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Raising issues about children's overweight: maternal and child health nurses' experiences2009In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 65, no 12, p. 2542-2551Article in journal (Refereed)
    Abstract [en]

    AIM: This paper is a report of a study carried out to describe maternal and child health nurses' experiences of communicating and raising issues with parents about children's overweight. BACKGROUND: Children's overweight and obesity are rapidly increasing in many countries around the world. Maternal and child health nurses are in a unique position to influence parents, but studies of their experiences in communicating with parents about overweight are lacking. METHOD: Ten maternal and child health nurses in culturally diverse rural and urban areas in Melbourne, Australia, were interviewed in 2007. Data were analysed using qualitative content analysis to identify key categories. FINDINGS: During the analysis, eight categories were identified. In summary, nurses described it as difficult to raise weight issues, especially if parents were overweight themselves. The growth chart was felt to be an essential tool in discussions about weight and nurses often described themselves as holding 'expert' roles in conversations. Denial, defensiveness and excuses about children being overweight were common reactions among parents and were described as difficult to deal with. However, a strong nurse-parent relationship was experienced as facilitating conversations about weight. CONCLUSION: Raising issues about weight can be difficult, especially if parents are overweight themselves. Further research in communications is needed to understand and approach parents better--especially overweight parents--about their children's weight. Interventions involving patient-centred approaches in this context have potential, but the area is still relatively unexplored. Maternal and child health centres could be important contributors in such future interventions.

  • 13. Garmo, A.
    et al.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Leksell, J.
    "The pump was a saviour for me." 'Patients' experiences of insulin pump therapy2013In: Diabetic Medicine, ISSN 0742-3071, E-ISSN 1464-5491, Vol. 30, no 6, p. 717-723Article in journal (Refereed)
    Abstract [en]

    Background and aim The present study formed part of a larger study examining the potential long-term effects of glycaemic control and treatment satisfaction in people with Type1 diabetes mellitus who changed from multiple daily insulin injections to insulin pump therapy. Individuals (n=46) who made the transition between May 1999 and February 2004 participated. The aim of the study was to describe experiences of the impact of insulin pump therapy in adults with Type1 diabetes mellitus after >5years' use of an insulin pump. Method During spring 2009, 16 of the individuals were interviewed through a narrative approach on the effects of insulin pump therapy on daily life. The interviews were analysed using content analysis. Results The overarching theme revealed that insulin pump therapy was experienced as both a shackle and a lifeline. Six sub-themes emerged: subjected vs. empowered; dependent vs. autonomous; vulnerable vs. strengthened; routinized vs. flexible; burdened vs. relieved; and stigmatized vs. normalized. Conclusions Users of insulin pump therapy have different views about and experience of having used the technical equipment over years. Both positive and negative views emerged. However, it is difficult to identify any general trends that cover all views and can predict which individuals will be able to manage pump therapy in the best way. Even so, the sub-themes and theme that emerged could be used by physicians and diabetes specialist nurses when counselling and planning educational programmes aimed at supporting self-management among people with insulin pump treatment.

  • 14.
    Graneheim, Ulla Hällgren
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    A lesson to learn: patients´critiques of diabetes nursing2011In: The Internet Journal of Advanced Nursing Practice, ISSN 1523-6064, Vol. 11, no 1, p. 0-0Article in journal (Refereed)
    Abstract [en]

    Background:  Most nurses sincerely wish the best for their patients and express frustration when they do not follow their advice. Reflecting on a critique of diabetes nursing from a patient perspective is essential to bridge gaps between health professionals and patients with diabetes and their understandings of possibly divergent treatment goals. Aim:  The aim of this study was to describe what patients with type 2 diabetes view as most important for diabetes specialty nurses to learn about receiving care for diabetes. Method:  An interview study was conducted among 44 patients diagnosed with type 2 diabetes over two years in Sweden. Narrative interviews were analysed using qualitative content analysis. Findings: ‘Not making a mountain out of a molehill’, ‘the more routine, the less life’, and ‘to err is human’ were identified as themes in the participants’ views about what nurses could learn, reflecting a criticism of some traditional aspects of diabetes nursing; i.e., a one-sided disease perspective, high adherence expectations, and a paternalistic attitude. Conclusion: Diabetes specialty nurses are focused on preventing complications by striving to regulate diabetes. A challenge for these nurses is to show they are partners; i.e., on the same side as the patients. Otherwise, nurses and patients will both lose. Possibly core caring values of nursing such as consoling, relieving, healing, and relating have not been given enough priority or have been replaced with more goal-oriented values such as treating, curing, and being effective.

  • 15. Graue, Marit
    et al.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Karlsen, Bjørg
    Sigurdardottir, Árún K.
    Diabetes nursing research: 6th Nordic conference: Highlights from the 6th Nordic Diabetes Nursing Research PhD and Post-doc Annual Conference, 23-24 April 2013, Bergen, Norway2013In: European Diabetes Nursing, ISSN 1551-7853, E-ISSN 1551-7861, Vol. 10, no 2, p. 69-70Article in journal (Refereed)
  • 16.
    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.

  • 17.
    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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  • 18.
    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.

  • 19.
    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.

  • 20.
    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.

  • 21.
    Hellström Ängerud, Karin
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brulin, Christine
    Umeå University, Faculty of Medicine, Department of Nursing.
    Eliasson, Mats
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Näslund, Ulf
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Cardiology.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    The Process of Care-seeking for Myocardial Infarction Among Patients With Diabetes2015In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 30, no 5, p. E1-E8Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: People with diabetes have a higher risk for myocardial infarction (MI) than do people without diabetes. It is extremely important that patients with MI seek medical care as soon as possible after symptom onset because the shorter the time from symptom onset to treatment, the better the prognosis.

    OBJECTIVE: The aim of this study was to explore how people with diabetes experience the onset of MI and how they decide to seek care.

    METHODS: We interviewed 15 patients with diabetes, 7 men and 8 women, seeking care for MI. They were interviewed 1 to 5 days after their admission to hospital. Five of the participants had had a previous MI; 5 were being treated with insulin; 5, with a combination of insulin and oral antidiabetic agents; and 5, with oral agents only. Data were analyzed according to grounded theory.

    RESULTS: The core category that emerged, "becoming ready to act," incorporated the related categories of perceiving symptoms, becoming aware of illness, feeling endangered, and acting on illness experience. Our results suggest that responses in each of the categories affect the care-seeking process and could be barriers or facilitators in timely care-seeking. Many participants did not see themselves as susceptible to MI and MI was not expressed as a complication of diabetes.

    CONCLUSIONS: Patients with diabetes engaged in a complex care-seeking process, including several delaying barriers, when they experienced symptoms of an MI. Education for patients with diabetes should include discussions about their increased risk of MI, the range of individual variation in symptoms and onset of MI, and the best course of action when possible symptoms of MI occur.

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  • 22.
    Holmlund, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hellström Ängerud, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Valham, Fredrik
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Olsson, Karin
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Experiences of living with symptomatic atrial fibrillation2023In: Nursing Open, E-ISSN 2054-1058, Vol. 10, no 3, p. 1821-1829Article in journal (Refereed)
    Abstract [en]

    AIM: To explore the experiences of living with symptomatic atrial fibrillation.

    DESIGN: This study, with a descriptive qualitative adesign, was performed using semi-structured individual interviews.

    METHOD: Six women and nine men with symptomatic atrial fibrillation were included. The transcribed interviews were analysed using qualitative content analysis. The COREQ checklist was followed.

    RESULTS: The analysis resulted in a main theme, namely balancing life and included the themes striving for illness control, becoming a receiver or an active partner in care and dealing with changed self-image. The participants strived to understand their illness, prevent attacks and manage anxiety. Some of the participants were not involved in decision-making, were uninformed about self-care measures, reported a lack of continuity in care and felt that the doctors focused on information about the medical part of care.

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  • 23.
    Holmlund, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Carl
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Olsson, Karin
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Valham, Fredrik
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hellström Ängerud, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    More positive patient-reported outcomes in patients newly diagnosed with atrial fibrillation: a comparative longitudinal study2024In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953Article in journal (Refereed)
    Abstract [en]

    Aims: To compare patient-reported outcomes (PROs) in patients newly (<6 months) diagnosed with atrial fibrillation (AF) with those who have had a longer diagnosis (≥6 months) and to investigate whether or not these outcomes change over a 6-month period.

    Methods and results: In this longitudinal survey study, 129 patients with AF completed the Revised Illness Perception Questionnaire, the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia, and the Hospital Anxiety and Depression Scale at baseline and after 6 months. At baseline, patients newly diagnosed with AF (n = 53), compared with patients with a previous diagnosis (n = 76), reported AF as more temporary (P = 0.003) and had a higher belief in personal and treatment control (P = 0.004 and P = 0.041, respectively). At a 6-month follow-up, patients newly diagnosed reported a lower symptom burden (P = 0.004), better health-related quality of life (HRQoL); (P = 0.015), and a higher personal control (P < 0.001) than patients previously diagnosed. Over time, in patients newly diagnosed, symptom burden and the anxiety symptom score decreased (P = 0.001 and P = 0.014, respectively) and HRQoL improved (P = 0.002).

    Conclusion: Patients newly diagnosed with AF reported more positive PROs both at baseline and at a 6-month follow-up than patients with a previous diagnosis of AF. Therefore, it is important to quickly capture patients newly diagnosed to support their belief in their own abilities. Such support may, alongside medical treatments, help patients manage the disease, which may lead to reduced symptom burden and better HRQoL over time.

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  • 24.
    Holmlund, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Carl
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Valham, Fredrik
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Olsson, Karin
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hellström Ängerud, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Illness perceptions and health-related quality of life in women and men with atrial fibrillation2024In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 39, no 1, p. 49-57Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Health-related quality of life (HRQoL) is worse in patients with atrial fibrillation (AF) compared with other populations. Factors affecting HRQoL in patients with AF are not fully clarified. Illness perceptions are important determinants of disease management and may affect HRQoL.

    OBJECTIVE: The aims of this study were to describe illness perceptions and HRQoL in women and men with AF and to explore the relationship between illness perceptions and HRQoL in patients with AF.

    METHODS: This cross-sectional study included 167 patients with AF. Patients completed the Revised Illness Perception Questionnaire and HRQoL questionnaires: Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmias, the three-level version of the EuroQol 5-dimensional questionnaire, and EuroQol visual analog scale. Subscales of the Revised Illness Perception Questionnaire significant in correlation analysis with the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmias HRQoL total scale were included in a multiple linear regression model.

    RESULTS: Mean age was 68.7 ± 10.4 years, and 31.1% were women. Women reported lower personal control (P = .039) and worse HRQoL measured with the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmias physical subscale (P = .047) and the EuroQol visual analog scale (P = .044) compared with men. Illness identity (P < .001), consequences (P = .031), emotional representation (P = .014), and timeline cyclical (P = .022) were related to and adversely affected HRQoL.

    CONCLUSIONS: This study found a relationship between illness perceptions and HRQoL. Some subscales of illness perceptions negatively affected HRQoL in patients with AF, which indicates that efforts to change illness perceptions may be helpful in improving HRQoL. Patients should be given the opportunity to talk about the disease, their symptoms, their emotions, and the consequences of the disease to enable increased HRQoL. A challenge for healthcare will be to design support for each patient based on his/her illness perceptions.

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  • 25.
    Holmlund, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Carl
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Valham, Fredrik
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Olsson, Karin
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Katsoularis, Ioannis
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Salonen, Lauri
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hellström Ängerud, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    The effects of a nurse-led, person-centred clinic on patient-reported outcomes in patients with atrial fibrillation: a randomised controlled trialManuscript (preprint) (Other academic)
  • 26.
    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.

  • 27.
    Hällgren Graneheim, Ulla
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Female caregivers' perceptions of reasons for violent behaviour among nursing home residents2012In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 19, no 2, p. 154-161Article in journal (Refereed)
    Abstract [en]

    Accessible summary

    • Threats and violence against professional caregivers present a growing health and safety problem in elderly care.
    • Caregivers attribute violent behaviour in the elderly to patient characteristics, caregiver approach and disorder in the environment.
    • Caregivers involved in a violent situation should strive to see the person behind the behaviour and the frustration that may have prompted it, to understand what the behaviour is meant to communicate, and to tailor interventions to the individual.

    Abstract

    Threats and violence against professional caregivers present a growing health and safety problem in elderly care. We aimed to explore female caregivers' perceptions of reasons for violent behaviour among nursing home residents. Forty-one caregivers at three nursing homes were interviewed and their responses were subjected to qualitative content analysis, which revealed three content areas of perceived reasons for patient violence: patient characteristics, caregiver approach and environmental aspects. The caregivers' perceptions were formulated in three core statements: ‘they (the residents) are not who they used to be’, ‘we (the caregivers) have acted inappropriately’ and ‘we (residents and caregivers) are all surrounded by disorder’. Our findings indicate that the reasons for violence are complex and multifactorial, so interventions should be individually tailored. Caregivers involved in a violent situation need to see the person behind the behaviour, try to interpret what the behaviour is meant to communicate and adjust the intervention according to individual need.

  • 28.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Experiences of diabetes care - patients' and nurses' perspectives2004Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Background: In order to provide good diabetes care it is important for the health care professionals to share patients’ personal understanding of living with diabetes, which differs from a professional understanding of the illness. Patients’ beliefs about health, illness, control and cure are predictive of the outcome of lifestyle changes and pharmacological treatment. Narratives about illness could be used to elucidate what people believe to be central to their experience of an illness and its management. The overall aim of this thesis was to investigate experiences of diabetes and diabetes care among people with type 2 diabetes and district nurses responsible for diabetes care within primary health care.

    Methods: Forty-four patients diagnosed with diabetes during the previous 2 years were interviewed about their personal understanding of illness and experiences of care. They also participated in an intervention study consisting of group sessions during 9 months. The intervention focused on the patients’ understanding of living with diabetes and was directed at the patients and their nurses (n = 5). The outcome variables haemoglobin A1c (HbA1c), lipids, blood pressure (BP) and body mass index (BMI) as well as well-being, treatment satisfaction and diabetes symptoms of the intervention group were compared with those in a control group (n = 60). Another ten patients were interviewed about their views of their lives. Seventeen nurses in diabetes care were interviewed about their views of their work with patients. The narrative, thematic interviews and focus group interviews were analysed using qualitative content analysis.

    Findings: Patients’ personal understanding of illness included the categories “image of the disease”; “meaning of the diagnosis”; “integration of the illness”; “space for the illness”; “responsibility for care”; and “future prospects”. Patients’ narratives about their lives included views of knowledge, and capacity, motivation and courage, aspects important for effective self-management. Patients’ views on clinical encounters in diabetes care, interpreted as satisfying or not, included the themes “being in agreement v. in disagreement about the goals”; “being autonomous and equal v. being forced into adaptation and submission”; “feeling worthy as a person v. feeling worthless”; “being attended to and feeling welcome v. being ignored”; and “feeling safe and confident v. feeling unsafe and lacking confidence”. The results of the intervention study with group sessions showed improvements in metabolic balance and treatment satisfaction in the intervention group. At the 1-year follow-up the mean difference between groups in HbA1c was 0.94% (95% confidence interval (CI) 0.58–1.29).

    Nurses’ views of their work included the themes “Perspectives on illness and caring are not easily integrated into views of disease and its treatment”; “Nurses view their knowledge as more important than the patients’ knowledge”; Nurses’ conscience is challenged by some of their nursing decisions”; “The individuality of each patient is undermined when patients are regarded as a collective group”; and “Nurses are confirmed in their role of nurses by patients who assume a traditional patient role”.

    Conclusion: These results demonstrate that the understanding of illness and care differs between patients and nurses working in diabetes care; furthermore, that an intervention involving patients and their nurses based on patients’ personal understanding of illness is effective with regard to metabolic control and treatment satisfaction. The cost of the intervention is moderate. Also, we believe that it is possible to clinically implement this intervention within the existing resources for primary health care.

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  • 29.
    Hörnsten, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Jutterström, Lena
    Umeå University, Faculty of Medicine, Department of Nursing.
    Audulv, Åsa
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    A model of integration of illness and self-management in type 2 diabetes2011In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, E-ISSN 1752-9824, Vol. 3, no 1, p. 41-51Article in journal (Refereed)
    Abstract [en]

    Aim. To describe the process of illness integration and self-management among people with type 2 diabetes.

    Background. Integration of illness is a developmental process referring to the emotional and existential aspects of being ill. It is an overarching concept that describes the process that a person undergoes in living with a chronic disease, from prediagnosis to adaptation to illness as a natural part of life. Despite the common use of terms such as illness integration and self-management, there exists little research that investigates how these concepts relate to one another.

    Methods. A narrative interview study applying qualitative content analysis was conducted with people diagnosed with type 2 diabetes. The study focused on their personal understandings of illness, and particularly, the relationship of the participants’ illness integration to self-management of the disease. Data were collected in 2002.

    Results. In the trajectory from prediagnosis to adaptation, there is a turning point when people seem to integrate the illness emotionally and existentially, and in relation to their self-management practice. The trajectory includes the phases of suspecting illness/being diagnosed, understanding and explaining the illness, and negotiating illness and taking stands about self-management. These phases in turn are influenced by perceptions of the seriousness and threat of the disease; the intensity and nature of the ill person’s emotional response to the disease and its management; goals and expectations for living with the disease and for living in general; and lastly, perceptions of the outcomes and impacts of self-management.

    Conclusion. Illness integration and self-management processes develop simultaneously. In some cases, a turning point occurs that causes the person to view self-management as both necessary and feasible.

    Relevance to clinical practice. Nurses may influence the illness integration trajectory and assist people with type 2 diabetes to integrate the disease and its management more readily.

  • 30.
    Hörnsten, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindahl, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Persson, Kristina
    Umeå University, Faculty of Medicine, Department of Nursing.
    Edvardsson, Kristina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Strategies in health-promoting dialogues: primary healthcare nurses' perspectives: a qualitative study2014In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 2, p. 235-244Article in journal (Refereed)
    Abstract [en]

    Aim and objectives The aim of this study was to describe dialogic strategies about health and lifestyle used by primary healthcare nurses (PHNs) in the Vasterbotten Intervention Programme (VIP) in Sweden.

    Background The VIP offers all citizens aged 40, 50 and 60 in Vasterbotten County an individual health check-up followed by a health-promoting dialogue with a specialist PHN. Inconsistencies in previous reports of the effects of lifestyle counselling and health promotion suggest that it is important to study dialogues about health and lifestyle to understand health-promoting strategies and to highlight aspects important to improving their effects.

    Method In 2010, we conducted in-depth interviews with ten experienced PHNs working with the VIP at eight healthcare centres in Vasterbotten County, Sweden. Qualitative content analysis was used to illuminate the nurses' strategies in health-promoting dialogues. The Regional Ethics Board (Dno 06-126M) approved the study.

    Results The PHNs used various strategies in dialogues about health and lifestyle that fell under the five themes 'Guiding patients vs. pressuring them; Adjusting to patients vs. directing the conversation; Inspiring confidence vs. instilling fear; Motivating and supporting patients vs. demanding responsibility; and lastly, Introducing emotionally charged subjects or avoiding them'.

    Conclusions The results of this study may add knowledge about the difficulties and opportunities in health counselling. In the discussion, we suggest professional reflection as a means to increase knowledge and awareness about the self and context in the process of health counselling.

  • 31.
    Hörnsten, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Almberg, Agneta
    Sandström, Herbert
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Nurses' experiences of conflicting encounters in diabetes care2008In: European Diabetes Nursing, ISSN 1551-7853, E-ISSN 1551-7861, Vol. 5, no 2, p. 64-69Article in journal (Refereed)
    Abstract [en]

    Aim: To describe nurses' experiences of encounters with patients in diabetes care.Methods: Focus-group interviews with 17 nurses about their experiences of caring for patients with diabetes. Interviews were analysed by qualitative content analysis.Results: Four themes described conflicts in their encounters with patients, disclosing a complex professional role as a diabetes nurse. Implementing guidelines at the same time as being patient-centred was found to be problematic. Nurses further viewed medical knowledge as being more important than life experience of diabetes. The nurses' comments were distanced from, and judgemental about, patients as a collective. Finally, the nurses felt comfortable in expert roles, but not in equal and mutual relationships with patients.Conclusion: The interviews identified a feeling of frustration over conflicting demands between different goals and ideologies for diabetes care. These conflicts may also arise from the difficulty of integrating medical goals and patients' life experiences of illness.

  • 32.
    Hörnsten, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Selstam, Eva Kihl
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sandström, Herbert
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Patient satisfaction with diabetes care2005In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 51, no 6, p. 609-617Article in journal (Refereed)
    Abstract [en]

    Aim. The aim of this paper is to report the findings of a study that elucidated the experiences and reflections of people with type 2 diabetes about clinical encounters.

    Background. Several patient satisfaction surveys have focused on privacy, cheerfulness and amenities rather than on how the care was delivered. A great deal of research has also focused on communication and various consultation styles, particularly within health promotion and diabetes care, but how these factors tie up with patient satisfaction has rarely been discussed. This study was performed in order to elucidate patients' perspectives about clinical encounters in diabetes care.

    Method. Interviews were carried out during 2001 with 44 patients with diabetes. The transcribed interviews were analysed using qualitative content analysis.

    Results. Five themes were connected to patient satisfaction and dissatisfaction, namely 'being in agreement vs. in disagreement about the goals'; 'autonomy and equality vs. feeling forced into adaptation and submission'; 'feeling worthy as a person vs. feeling worthless'; 'being attended to and feeling welcome vs. ignored'; and, lastly, 'feeling safe and confident vs. feeling unsafe and lacking confidence'.

    Conclusion. Despite efforts to individualize diabetes care and find ways to communicate with patients, many people have experiences of clinical encounters that they find dissatisfying. Experiences of dissatisfying encounters have elements that may threaten their perception of self and identity, while elements included in satisfying encounters are those characterizing patient-centred care.

  • 33.
    Hörnsten, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Stenlund, Hans
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Sandström, Herbert
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Metabolic improvement after intervention focusing on personal understanding in type 2 diabetes.2005In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 68, no 1, p. 65-74Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to evaluate, whether an educational intervention, focusing on patients' personal understanding of their illness, was more effective than care given according to national guidelines for diabetes care. METHODS: An intervention group (n = 44), with type 2 diabetes was compared with a control group (n = 60), with HbA1c as the primary outcome. The intervention included ten group sessions addressing themes related to the patients' personal understanding of their illness. The diabetes nurses involved were educated in theories about illness/wellness experiences and participated in group sessions where various caring strategies related to the patients' individual needs and understanding were reflected upon. RESULTS: At 1-year follow-up the intervention group showed lower HbA1c levels (mean difference 0.94%; P < 0.001), lower triglycerides (mean difference 0.52 mmol/l; P = 0.002) and higher high-density lipoprotein (mean difference 0.15 mmol/l; P = 0.029) and treatment satisfaction than did the control group. The differences remained when adjusting for age, gender, body mass index or changed treatment during the intervention period. Within the intervention group, BMI and treatment satisfaction were also improved. CONCLUSION: The intervention, which focused on patients' personal understanding of illness, was found to be effective in terms of metabolic control and treatment satisfaction.

  • 34.
    Hörnsten, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Norberg, Astrid
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Psychosocial maturity among people with diabetes mellitus2002In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 11, no 6, p. 777-784Article in journal (Refereed)
    Abstract [en]

    There is a relationship between coping with chronic illness and a person's psychosocial development.

    The aim of this study was to describe dimensions of psychosocial development based on results of a previous factor analysis of the Modified Erikson Psychosocial Stage Inventory among people with type 2 diabetes.

    Interviews were carried out with 10 people with diabetes. The transcribed interviews were analysed by qualitative content analysis into main categories, categories and themes.

    The categories were trust, lack of trust, positive identity, identity confusion, integrity and lack of integrity. Themes that permeated the categories in a positive way were 'activity' and 'involvement', while themes that permeated the categories in a negative way were 'passivity' and 'alienation'. Our interpretation is that the category 'trust' is the basis for 'identity', and together 'trust' and 'identity' are the basis for maturity and 'integrity'.

    A conclusion is that positive psychosocial maturity has to do with attaining trust, identity and integrity through activity and involvement. Qualities important for maturation through trust, identity and integrity are understanding, capacity, purposefulness and fortitude. Our interpretation of maturity is considered as being an important and interesting focus in nursing, while the above related qualities are closely connected to coping with diabetes.

  • 35.
    Hörnsten, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sandström, Herbert
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Personal understandings of illness among people with type 2 diabetes2004In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 47, no 2, p. 174-182Article in journal (Refereed)
    Abstract [en]

    Background. Professionals and patients understand the experience of illness from different worlds. Professionals' explanatory models focus on aetiology, diagnosis, pathophysiology and treatment, while patients' explanatory models are more focused on consequences and influences on daily life. The differences between patients and professionals in their understanding often result in conflicting expectations about treatment, priorities and outcomes of care.

    Aim. The aim of this study was to describe personal understandings of illness among people with type 2 diabetes in Sweden.

    Method. A sample of 44 patients, 47–80 years, diagnosed with type 2 diabetes within the last 2 years, was recruited from four health care centres. Narrative thematic interviews were used covering the areas of developing, coping with and living with diabetes. Qualitative content analysis was performed.

    Findings. The findings were formulated into six categories: image of the disease, meaning of the diagnosis, integration of the illness, space for the illness, responsibility for care and future prospects.

    Conclusions. The findings demonstrate that patients' personal understanding of illness is an important complement to the traditional professional view of diabetes. They could serve as a foundation for development of health history interviewing, as well as development of systems of documentation. Patients' personal understandings of diabetes in their daily lives are considered to be an important shared source of information for planning meaningful care.

  • 36.
    Hörnsten, Åsa
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Stenlund, Hans
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Public Health Sciences.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sandström, Herbert
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Allmänmedicin.
    Improvements in HbA1c remain after 5 years--a follow up of an educational intervention focusing on patients' personal understandings of type 2 diabetes2008In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 81, no 1, p. 50-5Article in journal (Refereed)
    Abstract [en]

    This paper reports a 5-year follow-up from a study aimed at evaluating whether an intervention which focused on patients’ personal understanding of their illness was more effective than conventional diabetes care with regard to metabolic control among patients with type 2 diabetes mellitus (DM2). The study was conducted within Swedish primary health care and included 102 patients (mean age 63 years). At clinic level they were randomised into control or intervention groups. The intervention directed at patients consisted of ten two-hour group sessions over 9 months, focusing on patients’ own needs and questions. The mean HbA1c at baseline was 5.71% (S.D. 0.76) in the intervention group and 5.78% (S.D. 0.71) in the control group. At the 5-year follow-up, the mean HbA1c in the intervention group still was 5.71% (S.D. 0.85) while among the controls it had increased to 7.08% (S.D. 1.71). The adjusted difference was 1.37 (p < 0.0001). Treatment upgrade, BMI, total cholesterol, HDL, LDL and triglycerides at baseline did not influence the difference in HbA1c. These findings indicate that group sessions in patients with DM2 focusing on patients’ personal understanding of their illness are more effective than conventional diabetes care with regard to metabolic control.

  • 37.
    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.

  • 38.
    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.