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  • 1.
    Blomberg, Karin
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Wengström, Yvonne
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Department NVS, Section for Nursing, Karolinska Institutet, Stockholm, Sweden.
    Sundberg, Kay
    Department NVS, Section for Nursing, Karolinska Institutet, Stockholm, Sweden.
    Browall, Maria
    Department NVS, Section for Nursing, Karolinska Institutet, Stockholm, Sweden; School of Life Sciences, University of Skövde, Skövde, Sweden.
    Isaksson, Ann-Kristin
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Hälleberg Nyman, Maria
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Langius-Eklöf, Ann
    Department NVS, Section for Nursing, Karolinska Institutet, Stockholm, Sweden.
    Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer: Scoping the perspectives of patients, professionals and literature2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, 139-145 p.Article in journal (Refereed)
    Abstract [en]

    Purpose: Under-diagnosed and uncontrolled symptoms in patients with prostate cancer during radiotherapy can have a negative impact on the individual's quality of life. An opportunity for patients to report their symptoms systematically, communicate these symptoms to cancer nurses and to receive self-care advice via an application in an Information and Communication Technology-platform could overcome this risk. The content in the application must precisely capture symptoms that are significant to both patients and health care professionals. Therefore, the aim of the study was to map and describe symptoms and self-care strategies identified by patients with prostate cancer undergoing radiotherapy, by health care professionals caring for these patients, and in the literature.

    Methods: The study combines data from interviews with patients (n ¼ 8) and health care professionals (n ¼ 10) and a scoping review of the literature (n ¼ 26) focusing on the period during and up to 6 months after radiotherapy.

    Results: There was a concordance between the patients, health care professionals, and the literature on symptoms during and after radiotherapy. Urinary symptoms, bowel problems, pain, sexual problems, fatigue, anxiety, depression, cognitive impairment and irregular symptoms were commonly described during the initial treatment period. Self-care strategies were rarely described in all three of the sources.

    Conclusions: The results show which symptoms to regularly assess using an Information and Communication Technology-platform for patients with newly-diagnosed prostate cancer during radiotherapy. The next step is to evaluate the efficacy of using the platform and the accuracy of the selected symptoms and self-care advice included in a smartphone application.

  • 2.
    Browall, Maria
    et al.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; School of Life Sciences, University of Skövde, Skövde, Sweden; Johns Hopkins University, Baltimore, Maryland, USA.
    Särenmalm, Elisabeth Kenne
    Research and Development Centre, Skaraborg Hospital, Skövde, Sweden; Institute of Health and Caring Sciences, Sahlgrenska Academy at Gothenburg University, Gothenburg, Sweden; Johns Hopkins University, Baltimore, Maryland, USA.
    Nasic, Salmir
    Research and Development Centre, Skaraborg Hospital, Skövde, Sweden.
    Wengström, Yvonne
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Gaston-Johansson, Fannie
    Johns Hopkins School of Nursing, Baltimore, Maryland, USA.
    Validity and Reliability of the Swedish Version of the Memorial Symptom Assessment Scale (MSAS): An Instrument for the Evaluation of Symptom Prevalence, Characteristics, and Distress2013In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 46, no 1, 131-141 p.Article in journal (Refereed)
    Abstract [en]

    Context. There are few scales in Swedish that assess symptoms in the dimensions of frequency, severity, and distress. Objectives. The purpose of this study was to translate and determine the validity and reliability of the Memorial Symptom Assessment Scale (MSAS) in a Swedish population of postmenopausal women newly diagnosed with primary or recurrent breast cancer. Methods. The original 32-item MSAS, a self-report measure for assessing symptom distress and frequency in cancer patients, was translated and administered to 206 patients (primary, n = 150 and recurrent, n = 56). Results. The MSAS psychological symptom subscale correlated with the emotional and cognitive functioning subscales of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), and showed the highest correlation with the EORTC QLQ-C30 emotional functioning subscale (r = -0.78; P < 0.01). The psychological symptom subscale also correlated with the Hospital Anxiety and Depression Scale (HADS) within values for anxiety (r = 0.68; P < 0.01) and with the EORTC QLQ-C30 within cognitive functioning values (r = -0.58; P < 0.01). The Global Distress Index (GDI)-MSAS showed satisfactory correlations with the EORTC QLQ-C30 emotional functioning subscale (r = -0.75; P < 0.01), whereas the correlation between the GDI-MSAS and the EORTC QLQ-C30 cognitive functioning subscale was somewhat lower (r = -0.54; P < 0.01). Correlations between the GDI-MSAS and the HADS anxiety subscale were confirmed (r = 0.62; P < 0.01), and a correlation between the MSAS physical symptom items and symptom items in the EORTC-QLQ-C30 was evident (r = 0.60-0.85; P < 0.01). Cronbach's alpha coefficients for the MSAS and MSAS subscales based on symptom scores ranged from 0.80 to 0.89. The internal consistency at different time points was satisfactory, ranging from 0.86 (baseline) to 0.90 (follow-up). Conclusion. The Swedish version of the MSAS presents as a valid and reliable measure for assessing symptom distress, severity, and frequency in Swedish patients diagnosed with primary and recurrent breast cancer. J Pain Symptom Manage 2013;46:131-141. = 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  • 3.
    Browall, Maria
    et al.
    Karolinska Institutet, Department of Neurobiology Care Science and Society. Division of Nursing, Stockholm, Sweden.
    Östlund, Ulrika
    Karolinska Institutet, Department of Neurobiology Care Science and Society. Division of Nursing, Stockholm, Sweden.
    Henoch, I.
    Institute of Health and Care Sciences, The Sahlgrenska Academy University of Gothenburg, Gothenburg, Sweden.
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology Care Science and Society. Division of Nursing, Stockholm, Sweden.
    The course of health related quality of life in postmenopausal women with breast cancer from breast surgery and up to five years post-treatment2013In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 49, S344-S345 p.Article in journal (Refereed)
    Abstract [en]

    Background: Cancer treatment of the elderly patients is an increasingly important concern since the risk for developing breast cancer increases with age. The effects of adjuvant chemotherapy on the breast cancer disease seem to be as good for pre and postmenopausal patients, at least for hormone receptor negative patients. However, very few patients older than 65 years are included in randomised studies. In clinical practice, it is common that elderly women are offered less chemotherapy, because of the unsubstantiated belief that they will experience a larger number and more severe adverse effects as well as poor functional outcomes and significant decrements in health related quality of life (HRQOL). The aim of this study was to follow HRQOL in postmenopausal women (55−80 years) with breast cancer receiving adjuvant treatment after surgery, until five years post-treatment, and compare with a general population.

    Patients and Methods: The patient sample included 150 women (adjuvant CT n = 75 and RT n = 75) and two reference samples from the Swedish SF- 36 norm database.

    Results: The results showed that at baseline the women in the patient sample experienced significantly higher levels of physical functioning and general health compared to the general population. They also experienced significantly less bodily pain, lower emotional role functioning and mental health. Five years after completion of treatment, the patient sample experienced better HRQOL than the reference sample in all domains, supporting our hypothesis that the impact on HRQOL would have been resolved over time for these patients. Conclusion: Postmenopausal women (55−80 years) seem to successfully manage the effects of adjuvant treatment on HRQOL.

  • 4.
    Browall, Maria
    et al.
    School of Life Sciences, University of Skövde, Sweden; Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden.
    Östlund, Ulrika
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden; Umeå University, Department of Nursing, Umeå, Sweden.
    Henoch, Ingela
    The Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden.
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden.
    The course of Health Related Quality of Life in postmenopausal women with breast cancer from breast surgery and up to five years post-treatment2013In: Breast, ISSN 0960-9776, E-ISSN 1532-3080, Vol. 22, no 5, 952-957 p.Article in journal (Refereed)
    Abstract [en]

    Background: Previous studies include too few patients over 70 years to be able to assess treatment effects on Health Related Quality Of Life (HRQOL) in the older age group. We aimed to follow HRQOL in postmenopausal women (55-80 years) with breast cancer receiving adjuvant treatment, until five years post-treatment, and compare with a general population.

    Patients and methods: The patient sample included 150 women (adjuvant CT n - 75 and RT n - 75) and two reference samples from the Swedish SF-36 norm database.

    Results: Data from baseline showed significantly higher levels of physical functioning and general health among the patients compared to the reference sample, and significantly lower levels of bodily pain, emotional role functioning and mental health. Longitudinal analyses showed significant changes in all scales, and three different patterns (a decrease-stable, a decrease-increase, and a stable-increase pattern) were identified.

    Conclusion: Postmenopausal women seem to successfully manage the effects of adjuvant treatment on HRQOL. (C) 2013 Elsevier Ltd. All rights reserved.

  • 5.
    Bäckman, Malin
    et al.
    Department of Neurobiology, Care Science and Society, Division of Nursing Karolinska Institute, Stockholm, Sweden.
    Wengström, Yvonne
    Department of Neurobiology, Care Science and Society, Division of Nursing Karolinska Institute, Stockholm, Sweden.
    Johansson, Birgitta
    Department of Radiology, Oncology and Radiation Science, Uppsala University, Uppsala, Sweden.
    Sköldengen, Ida
    Department of Radiology, Oncology and Radiation Science, Uppsala University, Uppsala, Sweden.
    Börjesson, Susanne
    Department of Surgery, Central Hospital of Falun, Falun, Sweden: Department of Public Health and Caring Science, Uppsala University, Uppsala, Sweden.
    Tärnbro, Sara
    Department of Radiology, Oncology and Radiation Science, Uppsala University, Uppsala, Sweden.
    Berglund, Åke
    Department of Radiology, Oncology and Radiation Science, Uppsala University, Uppsala, Sweden.
    A randomized pilot study with daily walking during adjuvant chemotherapy for patients with breast and colorectal cancer2014In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 53, no 4, 510-520 p.Article in journal (Refereed)
    Abstract [en]

    Background. Physical activity during chemotherapy has been shown in several studies to reduce fatigue, improve symptoms and impact positively on health-related quality of life (HRQoL). Challenges associated with intervention studies on physical activity during cancer treatment relate to consistent adherence. The primary objective was to study feasibility and adherence of physical activity intervention among patients with cancer during adjuvant chemotherapy treatment. The secondary objective was to investigate the effects of physical activity on health aspects, including HRQoL, symptoms and surrogate markers for cardiovascular disease. Material and methods. This randomized controlled trial included patients with breast cancer (BRCA) and colorectal cancer (CRC) during adjuvant chemotherapy. The intervention continued for 10 weeks and included daily walks of 10 000 steps and a weekly supervised group walk. Adherence was assessed by a pedometer and the number of participants who reported step counts every week and percentage of participants who achieved the target steps every week. Results. Adherence average reached 91% during the intervention period; in total 74% completed the exercise intervention. The majority of the participants achieved an average of 83% of the target of 10 000 steps per day for 10 weeks. There was a significant increase in daily physical activity (p = 0.016) in the intervention group. Significant differences were also found for some breast cancer-specific symptoms [swelling, mobility and pain (p = 0.045)]. The study showed a relatively small weight gain an average of 0.9 kg in the intervention group and 1.3 kg in the control group. Conclusion. Physical activity in the form of walking is feasible during adjuvant chemotherapy treatment despite increasing symptoms. The physical activity increased in the intervention group during the study time and had a positive impact on breast symptoms and the weight gain was lower in comparison to previous studies.

  • 6.
    Dahl, Oili
    et al.
    Department of Molecular Medicine and Surgery, Section of Reconstructive Plastic Surgery, Karolinska Institutet, Stockholm, Sweden.
    Wickman, Marie
    Department of Molecular Medicine and Surgery, Section of Reconstructive Plastic Surgery, Karolinska Institutet, Stockholm, Sweden.
    Wengström, Yvonne
    Department of Neurobiology Carescience and Society, Division of Nursing, NVS, Karolinska Institutet, Stockholm, Sweden.
    Adapting to life after burn injury: reflections on care2012In: Journal of Burn Care & Research, ISSN 1559-047X, E-ISSN 1559-0488, Vol. 33, no 5, 595-605 p.Article in journal (Refereed)
    Abstract [en]

    A burn injury is an unforeseen event that means physical and psychological trauma for the person afflicted. The trauma experienced by different individuals varies greatly, as do perceived problems during care, rehabilitation, and throughout the remainder of life. The purpose of this study was to explore burn patients' experiences of adapting to life after burn injury to acquire a deeper understanding of the most important issues for patients when providing care during and after a burn injury. A qualitative approach was applied, and interviews were conducted with 12 adult burn patients (8 men and 4 women) 6 to 12 months postburn. The interviews were analyzed using Kvales' method for structuring analysis and comprised a close reading and interpretation of the texts. Analysis focused on the personal experiences of burn patients living after burn injury and treatment. Struggling with the consequences of burn injury and how patients perceived life today after treatment are important issues for adapting to life after burn injury. New experiences of a fragile body, coping with daily life, and reflections of burn care were also prominent themes. Patients with burn injuries need adequate repeated information about the plan for their care, about the physiological changes, and more support to handle the trauma event. The patients would also like to be more involved in their care. A program of support and preparatory work to help the patient to cope with the new bodily sensations and new body image is necessary and should begin during hospital care. A multidisciplinary team approach for pain treatment needs to be prioritized. In addition, multidisciplinary follow-up after burns need to include patients with minor burns. (J Burn Care Res 2012;33:595-605)

  • 7.
    Dahl, Oili
    et al.
    Department of Molecular Medicine and Surgery, Section of Reconstructive Plastic Surgery, Karolinska Institutet, S-171 77 Stockholm, Sweden.
    Wickman, Marie
    Department of Molecular Medicine and Surgery, Section of Reconstructive Plastic Surgery, Karolinska Institutet, S-171 77 Stockholm, Sweden.
    Wengström, Yvonne
    Department of Neurobiology Care Science and Society, Division of Nursing, Karolinska Institutet, 23300, Huddinge, Sweden.
    The cultural adaptation and validation of a Swedish version of the Satisfaction With Appearance Scale (SWAP-Swe)2014In: Burns, ISSN 0305-4179, E-ISSN 1879-1409, Vol. 40, no 4, 598-605 p.Article in journal (Refereed)
    Abstract [en]

    Background: Body image dissatisfaction is a source of stress after burns and it is important to attempt to objectively measure this aspect. Unfortunately, there are no Swedish questionnaires to assess satisfaction of appearance after burns,. Aim: The aim of this study was to translate, culturally adapt and validate the Satisfaction With Appearance Scale (SWAP) into Swedish from American English to be used in the context of burn care. Method: The SWAP was translated and cross-cultural adapted inspired by the guidelines by Guillemin. Pre-testing with 13 burn patients was conducted and 90 patients tested the questionnaire in order to determine its psychometric properties. Results: Cronbach's alpha was 0.89 indicating a high level of internal consistency of Swedish SWAP. Test for construct validity showed that length of hospital stay, more severe burns and female gender generated significantly higher scores in SWAP-Swe. The principal-components analysis found similar subscales according to the original SWAP that together accounted for 68% of the total variance. Conclusions: SWAP-Swe is a reliable and valid instrument for use in a Swedish speaking population. The questionnaire was perceived to be relevant for usage in the context of burn care and is well understood by the patients. (C) 2013 Elsevier Ltd and ISBI. All rights reserved.

  • 8.
    Eicher, Manuela
    et al.
    University of Applied Science, School of Health Fribourg, Route des cliniques 15, Fribourg, Switzerland.
    Kadmon, Ilana
    Hadassah Medical Organization, , Israel; .
    Claassen, Saskia
    Catharina-Hospital, Eindhoven, Netherlands.
    Marquard, Sara
    Florence Nightingale Krankenhaus, D-Kaiserswerth, Germany .
    Pennery, Emma
    Breast Cancer Care, , United Kingdom .
    Wengström, Yvonne
    Karolinska Institutet, Stockholm, Sweden.
    Fenlon, Deborah
    University of Southampton, Southampton, United Kingdom .
    Training breast care nurses throughout Europe: the EONS post basic curriculum for breast cancer nursing2012In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 48, no 9, 1257-1262 p.Article in journal (Refereed)
    Abstract [en]

    Background: The European Parliamentary Group on Breast Cancer and the European Society of Breast Cancer Specialists state that there is a need for EU agreed guidelines on breast care nursing and training. Therefore the European Oncology Nursing Society (EONS) commissioned the development of a post-basic curriculum for breast cancer nursing. Purpose: The goal was to define a European curriculum for the training of breast care nurses. Methods: The curriculum was developed using a variety of sources, including guidelines from a number of European and other countries world wide, relevant literature and input from an expert panel of senior European nurses with expertise in breast care nursing. Results: An English language, European curriculum of breast care nursing was developed at a postbasic level to provide guidance for the training of breast care nurses throughout Europe. Definitions for breast care nurse roles and activities and levels of practice, as well as indicative content are provided. Conclusions: The training of nurses in breast cancer care should be mandatory and common practice for European countries. To enhance comparability and standard development, the indicative content should be applied in all future post-basic education. (C) 2011 Elsevier Ltd. All rights reserved.

  • 9.
    Ekedahl, MarieAnne
    et al.
    Psychology of Religion and Pastoral Counselling, Stockholm School of Theology, Bromma, Sweden.
    Wengström, Yvonne
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Department of Midwifery and Nursing, Cancer Care Research Centre, Stirling, United Kingdom.
    Caritas, spirituality and religiosity in nurses' coping2010In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 19, no 4, 530-537 p.Article in journal (Refereed)
    Abstract [en]

    The purpose of this qualitative study was to investigate registered nurses' coping processes when working with terminally ill and dying cancer patients, with special focus on religious aspects of coping resources. What religious components can be identified as coping resources in oncology nurses' orienting system and what function has religiosity in the nurse's work? The theoretical reference is care philosophy and the psychology of religion and coping. The material consists of interviews with 15 Swedish registered oncology nurses. The results highlight different dynamic aspects of the nurses' life orientation such as caritas, religiosity, spirituality and atheism and demonstrate that religiosity can have a protective function that facilitates coping, as the nurse has something to turn to. Religious coping dominated by basic trust where prayer is used as a coping strategy may support the nurse.

  • 10.
    Ekedahl, MarieAnne
    et al.
    Psychology of Religion and Pastoral Counseling – School of Theology,.
    Wengström, Yvonne
    Oncology-Pathology – Department of Research and Development, Karolinska University Hospital, Stockholm, Sweden.
    Coping processes in a multidisciplinary healthcare team: a comparison of nurses in cancer care and hospital chaplains2008In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 17, no 1, 42-48 p.Article in journal (Refereed)
    Abstract [en]

    The purpose of this paper is to compare the coping processes of hospital chaplains and nurses in cancer care and to discuss the findings in relation to work and stress in a multidisciplinary team. The results of the research question - 'what coping processes are used when confronting existential issues?' - reveal that, as members of the multidisciplinary healthcare team, both professions need space in work for significance; the nurse needs to be able to help the patient 'do good' and the hospital chaplain needs to be available to meet the patient. Boundary demarcation was found to be the most common coping strategy.

  • 11.
    Ekedahl, Marieanne
    et al.
    Stockholm School of Theology, Åkeshovsvägen 29, 168 39 Bromma, Sweden.
    Wengström, Yvonne
    Division of Nursing Research at Karolinska University Hospital and Department of Oncology, Radiumhemmet, Karolinska Institute, Eugeniahemmet , Stockholm, Sweden.
    Nurses in cancer care-coping strategies when encountering existential issues2006In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 10, no 2, 128-139 p.Article in journal (Refereed)
    Abstract [en]

    This paper is a presentation of general/secular coping strategies and strategies related to the caritas orientation that nurses in cancer care use when encountering stress. As a concept, caritas indicates the will to do good. The paper tries to provide an answer to the question of which functional and dysfunctional coping strategies nurses use when coping with work-related stress. The study is qualitative and hypothesis-generating. The material analysed consists of 15 interviews with Swedish registered nurses and is based on a life-story approach. Pargament's coping theory related to the psychology of religion has been applied for interpretation purposes. The nurses use several coping strategies with the dominant strategy being a general boundary demarcation. Other strategies that were used for coping included emotional outlets, caritas-oblivion and periodically changing activity. The strategies can be used in a functional or dysfunctional way; e. g. dysfunctional coping was present when there was a lack of human support and boundary demarcation. (C) 2005 Elsevier Ltd. All rights reserved.

  • 12.
    Eldh, Ann Catrine
    et al.
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Stockholm, Sweden.
    Vogel, Gisela
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Stockholm, Sweden.
    Soderberg, Anna
    Division of Nursing, Umeå University, Umeå, Sweden.
    Blomqvist, Hans
    Karolinska Institutet, Department of Clinical Sciences, Stockholm, Sweden.
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Stockholm, Sweden.
    Use of Evidence in Clinical Guidelines and Everyday Practice for Mechanical Ventilation in Swedish Intensive Care Units2013In: Worldviews on Evidence-Based Nursing, ISSN 1545-102X, E-ISSN 1741-6787, Vol. 10, no 4, 198-207 p.Article in journal (Refereed)
    Abstract [en]

    Background and AimOne way to support evidence-based decisions in health care is by clinical guidelines, in particular, in highly specialized care such as intensive care units (ICUs). The aim of this study was to explore the development and dissemination of guidelines regarding mechanical ventilation (MV) in Swedish ICUs, and the use of evidence on MV in guidelines and everyday practice. MethodsInviting all general ICUs in Sweden (N = 65), a national survey was performed on occurrence of MV guidelines, and a review of submitted ICU guidelines by four evidence items from the AGREE instrument. In addition, ICU head nurses and senior physicians were interviewed using semistructured and open-ended questions to explore development and dissemination of MV guidelines, staff adherence or nonadherence to guidelines, and everyday practice of MV management bedside. FindingsFifty-five ICUs (85%) participated in the study; 51 ICUs submitted a total of 245 guidelines, including recommendations for medical or nursing MV actions. None of the documents included how evidence had been sought or assessed, while 22% included a list of references (n = 54). No guidelines included patients' experiences of MV. According to the managers, the guidelines were most often compiled by a multiprofessional team sharing the information through the ICU's website. The guidelines were mainly used as a basis for MV management bedside, but variation occurred as a result of personal preferences, lack of awareness, and adjustment to patients' needs. ConclusionsLocal MV guidelines seem to constitute a basis for healthcare practice in Swedish ICUs, even though the evidence proposed was limited with respect to how it was attained and lacked patient perspectives. In addition, the strategies used for dissemination were limited, suggesting that further initiatives are needed to support knowledge translation in advanced healthcare environments such as ICUs.

  • 13.
    Fenlon, D.
    et al.
    Univ Southampton, Sch Hlth Sci, Southampton, Hants, England.
    Eicher, M.
    Univ Basel, Inst Nursing Sci, Basel, Switzerland.
    Marquard, S.
    Univ Witten Herdecke, Inst Nursing Sci, Witten, Germany.
    Kadmon, I.
    Breast Canc Ctr, Haddaseh Med Ctr, Jerusalem, Israel.
    Claassen, S.
    Catharina Hosp, Dept Surg, Eindhoven, Netherlands.
    Pennery, E.
    Breast Canc Care, London, England.
    Wengström, Yvonne
    Karolinska Inst, Div Nursing, Stockholm, Sweden.
    The development of a European breast care nursing post basic curriculum2009In: European Journal of Cancer Supplements, ISSN 1359-6349, E-ISSN 1878-1217, Vol. 7, no 2, 240-240 p.Article in journal (Refereed)
  • 14.
    Gustafsson, E.
    et al.
    Karolinska Univ Hosp, Dept Oncol, Stockholm, Sweden.
    Wengström, Yvonne
    Karolinska Univ Hosp, Dept Oncol, Stockholm, Sweden.
    Kidney cancerssystematic symptom assessment and evidence based care for patients with renal cell carcinoma that undertake treatment with tyrosine kinase inhibitors, TKI2011In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 47, S70-S70 p.Article in journal (Refereed)
  • 15.
    Hagelin, Carin Lundh
    et al.
    Research and Development unit, Stockholms Sjukhem Foundation, Mariebergsgatan 22, Stockholm, Sweden; Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden .
    Wengström, Yvonne
    Institution of Neurobiology, Caring Sciences and Society, Section of Nursing, Karolinska Institutet, Stockholm, Sweden; Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, United Kingdom .
    Åhsberg, Elizabet
    Institute for Evidence-Based Social Work Practice, The National Board of Health and Wellfare, Stockholm, Sweden.
    Fürst, Carl Johan
    Research and Development unit, Stockholms Sjukhem Foundation, Mariebergsgatan 22, Stockholm, Sweden; Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden .
    Fatigue dimensions in patients with advanced cancer in relation to time of survival and quality of life2009In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 23, no 2, 171-178 p.Article in journal (Refereed)
    Abstract [en]

    To understand the relation between fatigue and patients emotional situation at the end of life, this cross-sectional study aimed to explore the association between multidimensional aspects of fatigue, emotional functioning and quality of life (QoL) in patients with advanced cancer at the end of life. Patients with advanced cancer answered fatigue related measurements (Borg Category Ratio-10 scale, Multidimensional Fatigue Inventory-20, Swedish Occupational Fatigue Inventory and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30), when admitted for specialised palliative care. A total of 228 patients with a median length of survival of 63 days were included. In relation to time of survival, fatigue increased closer to death, in both global and multidimensional aspects, as well as the patient's experience of being sleepy. Marital status was found to affect the experience of fatigue in both global and multidimensional ratings of fatigue. The association between the experience of fatigue and feelings of being tense, worried, irritable or depressed and rated QoL decreased and was not evident closer to death. Fatigue in all dimensions increased, as patients got closer to death. The association between fatigue and both QoL and negative emotions faded away during the last days and weeks of life. Palliative Medicine (2009); 23: 171-178

  • 16.
    Hagelin, Carina Lundh
    et al.
    Research and Development Unit, Stockholms Sjukhem Foundation, Mariebergsgatan 22, Stockholm, Sweden .
    Wengström, Yvonne
    Institution of Neurobiology, Caring Sciences and Society, Section of Nursing, Karolinska Institutet, Stockholm, Sweden; Cancer Care Research Centre, Dept. of Nursing and Midwifery, University of Stirling, Stirling, United Kingdom .
    Fürst, Carl Johan
    Research and Development Unit, Stockholms Sjukhem Foundation, Mariebergsgatan 22, Stockholm 112 35, Sweden; Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden .
    Patterns of fatigue related to advanced disease and radiotherapy in patients with cancer: a comparative cross-sectional study of fatigue intensity and characteristics2009In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, no 5, 519-526 p.Article in journal (Refereed)
    Abstract [en]

    This cross-sectional comparative study was designed to explore and describe the prevalence and patterns of cancer-related fatigue in patients with advanced cancer as well as patients undergoing curative radiotherapy. Another aim was to explore the association of anxiety and depression with fatigue. Patients with an advanced stage of disease (n = 228) and patients receiving radiotherapy (n = 81) completed the Borg Category Ratio Scale, the Multidimensional Fatigue Inventory and the Hospital Anxiety and Depression Scale. Patients with advanced disease had an increased probability of experiencing all aspects of fatigue except for mental fatigue as compared to patients undergoing radiation, e.g., odds ratio 11.5 (CI 5.8-22.7) for physical fatigue. Higher scores for depression than for anxiety were reported when patients had high levels of fatigue, with 23% of the patients classified as anxious and 39% depressed. The present study was carried out in order to address a gap in research by comparing the multidimensional aspects of fatigue in different groups of cancer patients. It is the intensity of fatigue that seems to be related to the underlying exposure to radiation or to the level of disease burden rather than the different fatigue profiles, such as the relation between physical and mental aspects.

  • 17.
    Hagelin, Carina Lundh
    et al.
    Karolinska Institute, Research and Development Unit, Stockholms Sjukhem Foundation, Stockholm, Sweden; Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden .
    Wengström, Yvonne
    Tishelman, Carol
    Karolinska Institute, Research and Development Unit, Stockholms Sjukhem Foundation, Stockholm, Sweden; Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden; Department of Learning Informatics Management and Ethics, Karolinska Institute, Stockholm, Sweden; School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, United Kingdom.
    Fürst, Carl Johan
    Karolinska Institute, Research and Development Unit, Stockholms Sjukhem Foundation, Stockholm, Sweden; Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden .
    Nurses' experiences of clinical use of a quality of life instrument in palliative care2007In: Contemporary Nurse: health care across the lifespan, ISSN 1037-6178, E-ISSN 1839-3535, Vol. 27, no 1, 29-38 p.Article in journal (Refereed)
    Abstract [en]

    This pilot study explored how nursing staff experienced clinical use of a quality of life (QoL) instrument as complement to their standard assessment interview. Twenty-six of 36 Registered Nurses working in one palliative care service responded in writing to six open questions. We found that nurses described Positive features in using the QoL instrument related to how it supported their professional role, eased therapeutic contact with patients, and in terms of the outcomes of its use. Others noted difficulties incorporating the tool into the framework of their traditional nursing assessment, noting instrument and situation-specific limitations, with attitudes and comfort with the questionnaire affecting its use. Clinical use of QoL tools may be facilitated by emphasizing their role as a first screening assessment, and acknowledging and supporting the importance of clinical expertise and the patient-nurse relationship in further more focussed assessments and nursing care.

  • 18. Harrow, A.
    et al.
    Wengstrom, Yvonne
    Moller, T.
    Notter, J.
    Shewbridge, A.
    Wells, M.
    Living with and beyond breast cancer: European perspectives2014In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 50, S10-S11 p.Article in journal (Refereed)
  • 19.
    Heiwe, Susanne
    et al.
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden; Department of Physical Therapy, Karolinska University Hospital, Stockholm, Sweden; Clinical Research Utilization, Karolinska University Hospital, Stockholm, Sweden .
    Kajermo, Kerstin Nilsson
    Clinical Research Utilization, Karolinska University Hospital, Stockholm, Sweden.
    Tyni-Lenné, Raija
    Department of Physical Therapy, Karolinska University Hospital, Stockholm, Sweden ; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden .
    Guidetti, Susanne
    Clinical Research Utilization, Karolinska University Hospital, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Samuelsson, Monika
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Department of Occupational Therapy, Karolinska University Hospital, Stockholm, Sweden.
    Andersson, Inga-Lena
    Department of Nutrition and Dietetics, Karolinska University Hospital, Stockholm, Sweden .
    Wengström, Yvonne
    Clinical Research Utilization, Karolinska University Hospital, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Evidence-based practice: attitudes, knowledge and behaviour among allied health care professionals2011In: International Journal for Quality in Health Care, Vol. 23, no 2, 198-209 p.Article in journal (Refereed)
    Abstract [en]

    Objective: To explore dieticians', occupational therapists' and physical therapists' attitudes, beliefs, knowledge and behaviour concerning evidence-based practice within a university hospital setting. Design: Cross-sectional survey. Setting. University hospital. Participants: All dieticians, occupational therapists and physical therapists employed at a Swedish university hospital (n = 306) of whom 227 (74%) responded. Main Outcome Measures: Attitudes towards, perceived benefits and limitations of evidence-based practice, use and understanding of clinical practice guidelines, availability of resources to access information and skills in using these resources. Results: Findings showed positive attitudes towards evidence-based practice and the use of evidence to support clinical decision-making. It was seen as necessary. Literature and research findings were perceived as useful in clinical practice. The majority indicated having the necessary skills to be able to interpret and understand the evidence, and that clinical practice guidelines were available and used. Evidence-based practice was not perceived as taking into account the patient preferences. Lack of time was perceived as the major barrier to evidence-based practice. Conclusions: The prerequisites for evidence-based practice were assessed as good, but ways to make evidence-based practice time efficient, easy to access and relevant to clinical practice need to be continuously supported at the management level, so that research evidence becomes linked to work-flow in a way that does not adversely affect productivity and the flow of patients. © The Author 2011. Published by Oxford University Press in association with the International Society for Quality in Health Care; all rights reserved.

  • 20.
    Heiwe, Susanne
    et al.
    Department of Medicine and Department of Clinical Sciences, Karolinska Institutet, Stockholm, Sweden.
    Nilsson-Kajermo, K.
    Clinical Research Utilization, Karolinska University Hospital, Stockholm, Sweden.
    Olsson, Mariann
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Gåfvels, Catharina
    Department of Social Work, Karolinska University Hospital, Stockholm, Sweden.
    Larsson, K.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Wengström, Yvonne
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Evidence-based practice among swedish medical social workers2013In: Social work in health care, ISSN 0098-1389, E-ISSN 1541-034X, Vol. 52, no 10, 947-958 p.Article in journal (Refereed)
    Abstract [en]

    We have explored Swedish medical social workers' attitudes, beliefs, knowledge, and behavior concerning evidence-based practice (EBP) and investigated the properties of a questionnaire to measure EBP. One hundred seventy-four Swedish medical social workers within university hospital care and primary care participated in a cross-sectional survey. Our results showed positive attitudes toward EBP and the use of evidence to support clinical decision making. EBP was seen as necessary and something that needed to be implemented more often. The main barriers to implementing EBP were lack of time (78%), the perception that EBP does not take into account the limitations of the clinical practice setting (78%), and lack of knowledge about relevant research (46%).

  • 21.
    Holm, Maja
    et al.
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden .
    Carlander, Ida
    Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden; Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden .
    Fürst, Carl-Johan
    Department of Clinical Science, Lund University, Institute for Palliative Care at Lund University and Region Skåne, Lund, Sweden .
    Wengström, Yvonne
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; School of Health and Medical Sciences, Örebro University, Örebro, Sweden .
    Arestedt, Kristofer
    Department of Medical Health Sciences, Linköping University, Linköping, Sweden; Center for Collaborative Palliative Care, Linnaeus University, Kalmar, Sweden .
    Öhlen, Joakim
    Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden; Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden .
    Henriksson, Anette
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden; Capio Geriatrics, Palliative Care Unit, Dalen Hospital, Stockholm, Sweden .
    Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers2015In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 14, 16Article in journal (Refereed)
    Abstract [en]

    Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.

    Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.

    Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.

    Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

  • 22.
    Holm, Maja
    et al.
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden.
    Henriksson, Anette
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden; Capio Geriatrics, Palliative Care Unit, Dalens Hospital, Stockholm, Sweden.
    Carlander, Ida
    Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden; Department of Learning, Informatics, Management, and Ethics, Medical Management Center, Karolinska Institutet, Stockholm, Sweden.
    Wengström, Yvonne
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Öhlen, Joakim
    Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden; Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Preparing for family caregiving in specialized palliative home care: an ongoing process2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 3, 767-775 p.Article in journal (Refereed)
    Abstract [en]

    Objective: Family caregivers have been given increasing importance in palliative home care and face a great responsibility as caregivers for patients suffering from incurable illness. Preparedness for caregiving has been found to moderate negative effects and promote well-being in family caregivers. The aim of our study was to explore family caregivers' own experiences of preparing for caregiving in specialized palliative home care.

    Method: An interpretive descriptive design was chosen. A strategic sampling method was applied with a focus on participants who rated their preparedness as high and low using a structured instrument. Qualitative interviews were completed with 12 family caregivers. They were analyzed using a constant-comparative technique.

    Results: Family caregivers described their experience of preparing for caregiving as an ongoing process, rather than something done in advance. The process was illustrated through three subprocesses: "awaring" (realizing the seriousness of the situation), "adjusting" (managing a challenging situation), and "anticipating" (planning for the inevitable loss).

    Significance of results: Knowledge about the process of preparedness for caregiving and its subprocesses could be valuable to healthcare professionals, given the positive effects shown by preparedness in this context. Being able to recognize the different subprocesses of preparedness for caregiving could provide healthcare professionals with opportunities to support family caregivers in managing them. Preparedness for caregiving should be seen as a process to be supported and promoted continuously in palliative home care, not just at enrollment.

  • 23.
    Johnston, Bridget
    et al.
    University of Dundee, UK.
    Kidd, Lisa
    Institute for Applied Health Research, School of Health, Glasgow Caledonian University, UK.
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology, Care Science and Society, Division of Nursing, Sweden.
    Kearney, Nora
    University of Dundee, UK.
    An evaluation of the use of Telehealth within palliative care settings across Scotland2012In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 26, no 2, 152-161 p.Article in journal (Refereed)
    Abstract [en]

    There is a lack of evidence-based research in the use of Telehealth within palliative care in the UK, particularly in Scotland. The aim of this project was to evaluate the current use of Telehealth applications within palliative care across Scotland, and how these and future applications are perceived by patients, carers and professionals. This paper reports on the qualitative findings from focus groups with patients and carers in three geographical areas in Scotland, and individual interviews with key stakeholders from across Scotland, who currently work within areas of high and low Telehealth activity. The key findings indicated that Telehealth initiatives are welcomed by patients and carers but that these should be an adjunct to clinical care rather than an alternative. The stakeholder interviews revealed several notable differences between those working within areas of high and low Telehealth activity. Principally, areas of high Telehealth activity appear to be driven by national and local policy and seem to benefit from a greater level of investment in Telehealth equipment and facilities than in the more central, and hence accessible, parts of Scotland.

  • 24.
    Kidd, Lisa
    et al.
    Institute for Applied Health Research, School of Health, Glasgow Caledonian University, Glasgow, United Kingdom .
    Cayless, Sandi
    Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, United Kingdom.
    Johnston, Bridget
    Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, United Kingdom.
    Wengström, Yvonne
    School of Nursing and Midwifery, University of Dundee, Dundee, United Kingdom, Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institute, Stockhom, Sweden .
    Telehealth in palliative care in the UK: a review of the evidence2010In: Journal of Telemedicine and Telecare, ISSN 1357-633X, E-ISSN 1758-1109, Vol. 16, no 7, 394-402 p.Article in journal (Refereed)
    Abstract [en]

    We reviewed telehealth applications which were being used in palliative care settings in the UK. Electronic database searches (Medline, CINAHL, PsychInfo and Embase), searches of the grey literature and cited author searches were conducted. In total, 111 papers were identified and 21 documents were included in the review. Telehealth was being used by a range of health professionals in oncology care settings that included specialist palliative care, hospices, primary care settings, nursing homes and hospitals as well as patients and carers. The most common applications were: out-of-hours telephone support, advice services for palliative care patients, carers and health professionals, videoconferencing for interactive case discussions, consultations and assessments, and training and education of palliative care and other healthcare staff. The review suggests that current technology is usable and acceptable to patients and health professionals in palliative care settings. However, there are several challenges in integrating telehealth into routine practice.

  • 25.
    Kitson, Alison
    et al.
    Discipline of Nursing, School of Population Health and Clinical Practice, University of Adelaide, Adelaide, Australia; Green Templeton College, University of Oxford, Oxford, UK; Centre for Evidence based Practice, South Australia, Adelaide, Australia.
    Conroy, Tiffany
    School of Population Health and Clinical Practice, University of Adelaide, Adelaide, Australia; Centre for Evidence based Practice, South Australia, Adelaide, Australia.
    Wengström, Yvonne
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Profetto-McGrath, Joanne
    Faculty of Nursing, University of Alberta Edmonton, Alberta, Canada.
    Robertson-Malt, Suzi
    Sidra Medical and Research Centre, Doha, Qatar.
    Defining the fundamentals of care2010In: International Journal of Nursing Practice, ISSN 1322-7114, E-ISSN 1440-172X, Vol. 16, no 4, 423-434 p.Article in journal (Refereed)
    Abstract [en]

    A three-stage process is being undertaken to investigate the fundamentals of care. Stage One (reported here) involves the use of a met a-narrative review methodology to undertake a thematic analysis, categorization and synthesis of selected contents extracted from seminal texts relating to nursing practice. Stage Two will involve a search for evidence to inform the fundamentals of care and a refinement of the review method. Stage Three will extend the reviews of the elements defined as fundamentals of care. This introductory paper covers the following aspects: the conceptual basis upon which nursing care is delivered; how the fundamentals of care have been defined in the literature and in practice; an argument that physiological aspects of care, self-care elements and aspects of the environment of care are central to the conceptual refinement of the term fundamentals of care; and that efforts to systematize such information will enhance overall care delivery through improvements in patient safety and quality initiatives in health systems.

  • 26.
    Kotronoulas, G.
    et al.
    Univ Dundee, Sch Nursing & Midwifery, Dundee, Scotland.
    Kearney, N.
    Univ Dundee, Sch Nursing & Midwifery, Dundee, Scotland.
    Wengström, Yvonne
    Karolinska Inst, Dept Neurobiol Care Sci & Soc, Div Nursing, Huddinge, Sweden.
    Sleep-wake disturbances in patients with cancer and informal caregivers: the added value of a dyadic approach in their assessment and management2011In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 47, S328-S328 p.Article in journal (Refereed)
  • 27.
    Kotronoulas, Grigorios
    et al.
    School of Nursing & Midwifery, University of Dundee, 11 Airlie Place, Dundee, UK.
    Wengström, Yvonne
    Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Kearney, Nora
    School of Nursing & Midwifery, University of Dundee, 11 Airlie Place, Dundee, UK.
    A critical review of women's sleep-wake patterns in the context of neo-/adjuvant chemotherapy for early-stage breast cancer2012In: Breast, ISSN 0960-9776, E-ISSN 1532-3080, Vol. 21, no 2, 128-141 p.Article in journal (Refereed)
    Abstract [en]

    Complaints of poor nocturnal sleep and daytime dysfunction may be frequent among women receiving chemotherapy for breast cancer. A critical review of the literature was conducted, which aimed at summarising and critically analysing findings regarding sleep in women with early-stage breast cancer across neo-/adjuvant chemotherapy treatment. A systematic search of three electronic databases (Medline, CINAHL, EMBASE) was conducted from January 1980 to July 2011. Twenty-one articles reporting on 12 studies were included for analysis based on pre-specified selection criteria. Varying deficits in sleep parameters may be evident in a significant part of this population. Yet, research data are not equally distributed among the different sleep components, or across all major time points throughout chemotherapy. More systematic investigation of the experience of disrupted sleep in this population with longitudinal mixed-methods studies is warranted to ensure that person-tailored and clinically meaningful care is delivered. (C) 2011 Elsevier Ltd. All rights reserved.

  • 28.
    Kotronoulas, Grigorios
    et al.
    University of Dundee, School of Nursing & Midwifery, Dundee, United Kingdom.
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology Care Science & Society Division of Nursing, Huddinge, Sweden.
    Kearney, Nora
    University of Dundee, School of Nursing & Midwifery, Dundee, United Kingdom.
    Dyadic sleep/wake assessments in cancer care: new insight from a longitudinal study among women with breast cancer and their informal caregivers during adjuvant chemotherapy2013In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 49, S379-S380 p.Article in journal (Refereed)
    Abstract [en]

    Background: Alterations in habitual sleep/wake patterns (SWP) of women with breast cancer and their informal caregivers may be concurrently exacerbated and co-vary during the patient’s treatment. Taking into consideration the complexity of mechanisms interfering with a care dyad’s sleep, the current study set out to longitudinally explore SWP of patientcaregiver dyads in the context of adjuvant chemotherapy (CTh) for breast cancer.

    Material and Methods: In this descriptive, observational, repeatedmeasures dyadic study, 48 newly diagnosed women receiving outpatient adjuvant CTh for early stage breast cancer (stage I−IIIA), and their nominated primary informal caregiver completed self-reported sleep measures at pre-treatment (week prior to CTh), post-CTh cycle 1, post- CTh cycle 4, and approximately 30 days after CTh (total of 6 cycles received). Multivariate hierarchical linear modelling (MHLM) techniques were implemented to analyse dyadic sleep data.

    Results: Prior to CTh, 65% of dyads consisted of at least one poor sleeper, a rate further increasing to approximately 88% at CThC4. MHLM revealed curvilinear trajectories for most of dyads’ sleep/wake parameters that nevertheless reached significance (p <. 05) only for patients. In both groups, sleep/wake impairment reached its peak at mid-treatment (CThC4); yet, patients consistently reported significantly more sleep problems than their carers. Partial convergence also emerged as suggested by positive correlations and no between-groups differences in daily disturbance, daytime napping duration (NAPTIME), total sleep time, and overall sleep/ wake disruption at pre-treatment. At CThC4, rates of change in sleep latency and NAPTIME were alsosimilar.

    Conclusions: The current study is one of the first studies to show that a dyadic approach in the assessment of SWP in patients with breast cancer and their carers is a promising method to enhance exploration of potentially concurrent sleep-impairment. Replication of the current findings in future dyadic sleep research is an absolute priority. Meanwhile, clinicians will need to engage in concurrent systematic and on-going sleep assessments that synthesise and contrast data to establish a care dyad’s level of sleep quality.

  • 29.
    Kotronoulas, Grigorios
    et al.
    School of Nursing and Midwifery, University of Dundee, Dundee, United Kingdom.
    Wengström, Yvonne
    School of Nursing and Midwifery, University of Dundee, Dundee, United Kingdom; Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Kearney, Nora
    School of Nursing and Midwifery, University of Dundee, Dundee, United Kingdom.
    Informal carers: A focus on the real caregivers of people with cancer2012In: Forum of Clinical Oncology, E-ISSN 1792-362X, Vol. 3, no 3, 58-65 p.Article in journal (Refereed)
    Abstract [en]

    Background: Those who become active caregivers out of their simple need to be included in their loved ones' experience may act as a force in the support and sustenance of the person with cancer. Apart from family members, individuals "considered as family" by the patient may actively participate in the patient's cancer journey. The purpose of this clinical review is to raise clinician awareness on the multiple responsibilities assumed and the impact of active caregiving experienced by informal carers of patients with cancer, also offering a number of practical suggestions to promote person-centred support. Patients & Methods: An electronic search for original and review articles published between January 1990 and July 2011 in three research and evidence databases (MedLine, CINAHL, EMBASE) was carried out using the terms "caregiver" and "cancer". Results: Informal caregivers are often required to assume numerous roles and make changes in their lives until they find themselves striving to balance a host of responsibilities. By being practically and emotionally involved, however, caregivers' own lives can be affected, sometimes overwhelmingly. The physical, emotional, social, and financial stress that caregivers can face in this role may result in the neglect of their own needs, adversely affecting their quality of life. Conclusions: Research-driven support interventions such as peer support groups or psychological/emotional therapy, as well as honest, open and personalised communication with health care professionals and ongoing assessment of their needs can be of utmost importance in supporting those who contribute the most to the patients' cancer journey.

  • 30.
    Kotronoulas, Grigorios
    et al.
    School of Nursing & Midwifery, University of Dundee, Dundee, United Kingdom.
    Wengström, Yvonne
    School of Nursing & Midwifery, University of Dundee, Dundee, United Kingdom; Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Huddinge, Sweden.
    Kearney, Nora
    School of Nursing & Midwifery, University of Dundee, Dundee, United Kingdom.
    Sleep and sleep-wake disturbances in care recipient-caregiver dyads in the context of a chronic illness: a critical review of the literature2013In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 45, no 3, 579-594 p.Article in journal (Refereed)
    Abstract [en]

    Context. Alterations in sleep-wake patterns of care recipients and their informal caregivers are common in the context of a chronic illness. Given the current notion that sleep may be regulated within and affected by close human relationships, concurrent and interrelated sleep problems may be present in care recipient-caregiver dyads. Objectives. To critically analyze evidence regarding concurrent sleep patterns or changes in care recipient-caregiver dyads in the context of a chronic illness and address methodological and research gaps. Methods. Using a wide range of key terms and synonyms, three electronic databases (Medline, CINAHL, and Embase) were systematically searched for the period between January 1990 and July 2011. Results. Ten studies met prespecified selection criteria and were included for analysis. Study quality was fair to good on average. Seven studies were conducted in the context of dementia or Parkinson's disease, two in the context of cancer, and one study included a group of community elders with mixed related comorbidities and their informal caregivers. Bidirectional associations in the sleep of care recipient-caregiver dyads seem to exist. Concurrent and comparable nocturnal sleep disruptions also may be evident. Yet, inconsistencies in the methods implemented, and the samples included, as well as uncertainty regarding factors coaffecting sleep, still preclude safe conclusions to be drawn on. Conclusion. The dyadic investigation of sleep is a promising approach to the development of truly effective interventions to improve sleep quality of care recipients and their caregivers. Nevertheless, more systematic, longitudinal dyadic research is warranted to augment our understanding of co-occurrence and over time changes of sleep problems in care recipient-caregiver dyads, as well as to clarify covariates/factors that appear to contribute to these problems within the dyad and across time and context of illness. J Pain Symptom Manage 2013;45:579-594. (C) 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  • 31.
    Kotronoulas, Grigorios
    et al.
    School of Nursing & Midwifery, University of Dundee, Scotland, UK.
    Wengström, Yvonne
    School of Nursing & Midwifery, University of Dundee, Scotland, UK; Department of Neurobiology, Division of Nursing, Care Science and Society, Karolinska Institutet, Huddinge, Sweden.
    Kearney, Nora
    School of Nursing & Midwifery, University of Dundee, Scotland, UK.
    Sleep patterns and sleep-impairing factors of persons providing informal care for people with cancer: a critical review of the literature2013In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 36, no 1, E1-E15 p.Article in journal (Refereed)
    Abstract [en]

    Background: Sleep is increasingly recognized as an area of functioning that may be greatly affected in persons who are practically and emotionally involved in the care of patients with cancer. Clinician awareness is required to ensure that effective care for informal caregivers with sleep problems is provided. Objective: A 2-fold critical review of the published literature was conducted, which aimed at summarizing and critically analyzing evidence regarding sleep patterns of informal caregivers of adults with cancer and contributing factors to sleep-wake disturbances. Methods: Using a wide range of key terms and synonyms, 3 electronic databases (MEDLINE, CINAHL, EMBASE) were systematically searched for the period between January 1990 and July 2011. Results: Based on prespecified selection criteria, 44 articles were pooled to provide evidence on sleep-impairing factors in the context of informal caregiving, 17 of which specifically addressed sleep patterns of caregivers of people with cancer. Conclusions: At least 4 of 10 caregivers may report at least 1 sleep problem. Short sleep duration, nocturnal awakenings, wakefulness after sleep onset, and daytime dysfunction seem to be the areas most affected irrespective of stage or type of disease, yet circadian activity remains understudied. In addition, despite a wide spectrum of potential sleep-impairing factors, underlying causal pathways are yet to be explored. Implications for Practice: More longitudinal, mixed-methods, and comparison studies are warranted to explore caregiver sleep disorders in relation to the gravity of the caregiving situation in the context of diverse types of cancer and disease severity.

  • 32.
    Kotronoulas, Grigorios
    et al.
    School of Nursing and Midwifery, University of Dundee, Dundee, United Kingdom.
    Wengström, Yvonne
    School of Nursing and Midwifery, University of Dundee, Dundee, United Kingdom; Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Kearney, Nora
    School of Nursing and Midwifery, University of Dundee, Dundee, United Kingdom.
    Sleep-wake disturbances in patients with cancer and their informal caregivers: A matter of dyads2012In: Forum of Clinical Oncology: Quarterly Official Publication of the Hellenic Society of Medical Oncology, ISSN 1792-345X, E-ISSN 1792-362X, Vol. 3, no 1, 32-40 p.Article in journal (Refereed)
    Abstract [en]

    Background: Changes in habitual sleep are among the most remarkable and important concerns of both patients with cancer and their informal carers. A dyadic approach in the assessment and management of sleep problems in patients and carers is a promising method of exploring concurrent sleep disturbances and establishing associations between sleep and sleep-impairing factors that may co-vary in the members of the dyad. The purpose of the present mini-review article was to discuss the current evidence, as well as highlight areas where future research is warranted. Patients & Methods: An electronic search for original peer-reviewed articles published between January 1990 and July 2011 in three research and evidence databases (MedLine, CINAHL, EMBASE) was carried out using a wide range of keywords and free-text terms. Cancer care-related evidence was complemented by additional data derived from studies conducted with married couples or in the context of other chronic illnesses. Results: Concurrent and comparable nocturnal sleep disruptions might be evident, where poor sleep quality, decreased sleep duration, and multiple awakenings may correlate with each other within the dyad. Care recipients' and caregivers' night and day rest patterns can be synchronised, as caregivers organise their sleep around the patient. Conclusion: More systematic, dyadic research is warranted to enhance development of intervention protocols for the comprehensive management of sleep disorders in this population throughout the illness experience. These interventions will ensure that sleep patterns are assessed in depth and are managed in a concurrent manner to achieve a concurrent increased level of well-being of patient-caregiver dyads.

  • 33.
    McCabe, Mary S.
    et al.
    Cancer Survivorship Program, Memorial Sloan-Kettering Cancer Center, New York, New York; .
    Faithfull, Sara
    Faculty of Health and Medical Sciences, University of Surrey, Stag Hill, Guildford, Surrey, United Kingdom.
    Makin, Wendy
    Palliative Medicine and Oncology, The Christie National Health Service Foundation Trust, Manchester, United Kingdom.
    Wengström, Yvonne
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institute, Stockholm, Sweden.
    Survivorship programs and care planning2013In: Cancer, ISSN 0008-543X, E-ISSN 1097-0142, Vol. 119, no S11, 2179-2186 p.Article in journal (Refereed)
    Abstract [en]

    Formal cancer survivorship care is a growing focus internationally. This article provides a broad overview of the national strategies currently in progress for the development of survivorship programs and care plans within the United States and across Europe. The different approaches taken in their implementation, staffing, and clinical focus are highlighted, with an emphasis on how they are incorporated into various models of care. The considerable variation in making survivorship a formal period of care across countries and health care systems is discussed, including the factors influencing these differences. A review of research focused on the evaluation of definitions and outcomes is provided along with a discussion of important areas requiring future research. (C) 2013 American Cancer Society.

  • 34.
    McCann, Lisa
    et al.
    Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, UK.
    Illingworth, Nicola
    Wengström, Yvonne
    Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, UK.
    Hubbard, Gill
    Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, UK.
    Kearney, Nora
    Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling, UK.
    Transitional experiences of women with breast cancer within the first year following diagnosis2010In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 19, no 13-14, 1969-1976 p.Article in journal (Refereed)
    Abstract [en]

    Aims and objectives. To explore the experiences of 12 women with breast cancer, involved in a large longitudinal qualitative study designed to explore the experiences of people with cancer within the first year following diagnosis. Background. To understand experiences of breast cancer further as a chronic illness, this study draws on biographically informed and embodied perspectives of chronic illness. Design. Qualitative, longitudinal study. Method. Interviews were conducted at three time-points within the first year following diagnosis with 12 women with breast cancer. Drawing on the constant comparative method, a descriptive and thematic approach to data analysis was adopted. To move beyond the descriptive level, we drew on the concepts of biographical disruption and embodiment to further explore and explain the disruption that was evident in these women's lives as a result of their diagnosis. Results. Two key concepts emerged from the data: 'Identity Transition: moving between health and illness' and 'Making the Transition to the Future? Living with breast cancer and moving on'. Identity transition emerged as a result of the changes and adaptations participants were required to make as a result of their diagnosis. Making the transition to the future emerged as a result of the challenges these women faced living with cancer. Conclusions. This study showed that the longitudinal exploration of the experiences of cancer within the first year following diagnosis provides a vital understanding of the impact cancer can have on one's identity from the moment of diagnosis onwards. Relevance to clinical practice. This study has implications for cancer services because it highlights the need for interventions that support people to both successfully manage the experience of cancer diagnosis and treatment and equip themselves with the necessary techniques to negotiate transitions towards the future and living with cancer.

  • 35.
    McCann, Lisa
    et al.
    School of Nursing and Midwifery, University of Dundee, Scotland.
    Kearney, Nora
    School of Nursing and Midwifery, University of Dundee, Scotland.
    Wengström, Yvonne
    Department of Neurobiology, Care Science, and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    "It's just going to a new hospital ... That's It." Or is it?: An experiential perspective on moving from pediatric to adult cancer services2014In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 5, E23-E31 p.Article in journal (Refereed)
    Abstract [en]

    Background: Survivors of childhood cancer will, at some stage, move from pediatric to adult care and/or to a different model of care to continue to receive long-term follow-up. Literature relating to transitional care for childhood onset conditions exists, but little research has been undertaken into transition in a cancer context, specifically from an experiences perspective.

    Objective: The aim of this study was to report how the process of transition should be considered within the context of young people's entire illness experience and how that experience can impact their transition readiness.

    Intervention/Methods: A qualitative, collective case study approach was adopted. Semistructured interviews were conducted with young people, parents, and healthcare professionals. Young people's oncology case notes were also reviewed. RESULTS:: Data analysis generated a multidimensional and multiple-perspective understanding of the experience of the process of transition. A central orienting theme was identified: the experience of readiness in the context of transition.

    Conclusion: Understanding the multifaceted components of readiness is crucial; readiness should embody people's illness experiences, the numerous and associated losses intertwined with a move from pediatric to adult care, and the simultaneous developmental changes occurring in people's lives.

    Implications for practice: The findings provide a meaningful framework to understand the experience of transition from the perspective of young people, parents, and healthcare professionals. These findings could help with the planning and preparation of individualized transitional care pathways for survivors of childhood cancer.

  • 36.
    McCann, Lisa
    et al.
    Univ Dundee, Sch Nursing & Midwifery, Dundee, Scotland.
    Wengström, Yvonne
    Karolinska Inst, Dept Neurobiol Care Sci & Sociol, Div Nursing, Stockholm, Sweden.
    Kearney, Nora
    Univ Dundee, Sch Nursing & Midwifery, Dundee, Scotland.
    Transition or transfer?: an experiential perspective on moving from paediatric to adult cancer services2012In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 59, no 6, 1120-1120 p.Article in journal (Refereed)
    Abstract [en]

    Purpose: To explore the experiences of young adult survivors of childhood cancer, their parents, health care professionals and case noteevidence of the process of transition from paediatric to adult cancer services.

    Methods: A qualitative case study, with 12 cases recruited. Audio recorded, individual, semistructured interviews were conducted to explore experiences of transition with young people, parents and health care professionals. Young people: 7 males and 5 females aged between 17 and 25 and who were survivors of childhood cancer were interviewed; Parents: 11 mothers and 1 father were nominated and interviewed; Health care professionals: 11 health care professional interviews were conducted. Also, young people’s case notes from both the paediatric and adult sector, where available, were subjected to a case note review for further evidence relating to their transition experience. In total, 22 sets of case notes were reviewed.

    Results: The findings from this study provide a detailed, triangulated multi-perspective and multi-layered depiction of the transition experience of young people, parents, and health care professionals, explained by an orienting theme, ‘The experience of readiness in the context of transition’. This readiness was considered multi-dimensional in nature and was supported by means of three main themes, as derived from the interview and case note data in this study.

  • 37.
    Molassiotis, Alex
    et al.
    School of Nursing, University of Manchester, Manchester, United Kingdom.
    Wengström, Yvonne
    Cancer Care Research Centre, University of Stirling, Stirling, United Kingdom; Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Kearney, Nora
    Cancer Care Research Centre, University of Stirling, Stirling, United Kingdom.
    Symptom cluster patterns during the first year after diagnosis with cancer2010In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 39, no 5, 847-858 p.Article in journal (Refereed)
    Abstract [en]

    Context. Research about clusters of symptoms in oncology is an emerging field of study. However, there is still conceptual confusion about clusters of symptoms and little agreement across studies. Objectives. The aim of the present study was to explore clusters of symptoms over time in a large heterogeneous group of patients with cancer and thereby contribute to the conceptual and methodological debate in this research area. Methods. A longitudinal design was used to assess symptoms in cancer patients over four time points during the first year after diagnosis using the Memorial Symptom Assessment Scale. The study recruited 143 patients from five U.K. cancer centers and provided 504 symptom assessments at the beginning of treatment and 3, 6, and 12 months later. Results. Six symptom clusters were identified at the first assessment, which were maintained across the assessment points with slight variations. These included gastrointestinal, hand/foot, body image, respiratory, nutritional, and emotional symptom clusters. The behavior of the clusters over time highlighted the complexities of symptom cluster assessment and the dynamic relationships between symptoms. Frequency, severity, and distress from symptoms were significantly higher (up to 75% higher) in patients who experienced a cluster of symptoms than in the overall sample, suggesting that symptom assessments in unselected patients underestimate the symptom burden in subgroups of patients. Conclusion. We propose attention to symptom clusters that are stable across time and include core or defining symptoms within the cluster, and we further discuss the usefulness and applicability of conceptual and methodological criteria used in this study for future symptom cluster research. J Pain Symptom Manage 2010;39:847-858. (C) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  • 38.
    Pagels, Agneta A.
    et al.
    Department of Nephrology, Karolinska University Hospital, Stockholm, Sweden. .
    Wång, Marie
    Department of Nephrology, Karolinska University Hospital, Stockholm, Sweden. .
    Wengström, Yvonne
    Department of Nephrology, Karolinska University Hospital, Stockholm, Sweden. .
    The impact of a nurse-led clinic on self-care ability, disease-specific knowledge, and home dialysis modality.2008In: Nephrology nursing journal : journal of the American Nephrology Nurses' Association, Vol. 35, no 3, 242-248 p.Article in journal (Refereed)
    Abstract [en]

    A nurse-led clinic focusing on education and self-care for patients with advanced renal failure was introduced in a renal outpatient clinic in Sweden. The purpose was to enhance patients' disease-related knowledge, involvement, and self-care ability. This article reports the results of a study comparing patient outcomes with the nurse-led clinic to the previous model of care. The hypothesis was that the nurse-led clinic would increase medical control and self-care outcomes. The participants in the nurse-led clinic chose and started dialysis in a self-care alternative and also had a functioning, permanent dialysis access to a greater extent than the patients in the comparison group. Those choosing home-hemodialysis rated their self-care ability higher. The participants rated self-care and effects of treatment options on family and everyday life as the most important disease-related areas of knowledge.

  • 39.
    Persson, Carina
    et al.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden .
    Östlund, Ulrika
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden .
    Wennman-Larsen, Agneta
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden .
    Wengström, Yvonne
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden .
    Gustavsson, Petter
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden .
    Health-related quality of life in significant others of patients dying from lung cancer2008In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 22, no 3, 239-247 p.Article in journal (Refereed)
    Abstract [en]

    This study compares health-related quality of life (HRQOL) in significant others of patients dying from lung cancer, with a general population sample. Further, it explores the course of HRQOL from diagnosis (T1), at a time point close to the patient's death M), and six months after the patient's death (T3). The group comparisons at T1 showed that the significant others scored significantly lower on the scales in the mental domain compared with a general population sample. These results were the same at T3, when the significant others also scored lower on most of the scales in the physical and social domains. In the longitudinal analyses, there were significant changes in four scales, and three patterns of change were identified: a decrease-increase pattern for 'self-rated health' and 'positive affect'; a constant decrease pattern for 'family functioning'; and a decrease-stable pattern for 'satisfaction with family functioning'. Thus, living with inoperable lung cancer in the family and then facing the death of a family member affects most of the HRQOL dimensions.

  • 40.
    Pettersson, Pia Holmer
    et al.
    Karolinska Institutet, Department of Molecular Medicine and Surgery Stockholm, Sweden; The Red Cross University College, Stockholm, Sweden.
    Wengström, Yvonne
    Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden.
    Acupuncture prior to surgery to minimise postoperative nausea and vomiting: a systematic review2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 13-14, 1799-1805 p.Article in journal (Refereed)
    Abstract [en]

    Aims and objectives. The aim of this systematic review was to assess the outcome of acupuncture treatment prior to surgery in order to avoid or minimise postoperative nausea and vomiting. Background. The symptoms of nausea and/or vomiting remain a huge problem for many patients after surgery. There is much debate around the best treatment for nausea and/or vomiting, and the most beneficial solution has yet to be found. Postoperative nausea and vomiting is not a life-threatening symptom, but many patients express great distress and dissatisfaction with the existing treatment. Many patients rate their nausea similar to or worse than pain. Historically, treatments often include drug therapy, but not other non-pharmacologic therapies, such as acupuncture or acupressure, which can have beneficial effects on nausea. Design. A systematic literature review. Methods. The review was undertaken using key words and electronic databases and included 21 papers from the years November 1996 until August 2009. Results. The results indicate that the application of acupuncture reduced the incidence of nausea but not vomiting when compared with the use of antiemetic prophylaxis alone. Conclusions. The results show that there is a lack of knowledge of the best treatment to minimise postoperative nausea and vomiting prior to surgery. Relevance to clinical practice. The overall results of this review conclude that all kinds of AP stimulation, both non-invasive and invasive, seem to prevent PONV with minimal side effects. The findings from this study can be used to inform future research to evaluate the effects of preoperative treatment with acupuncture vs. sham procedure before surgery to avoid PONV.

  • 41.
    Robertson, S.
    et al.
    Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.
    Wengström, Yvonne
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska University Hospital, Stockholm, Sweden.
    Eriksen, C.
    Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden; Department of Breast and Endocrine Surgery, Karolinska University Hospital, Stockholm, Sweden.
    Sandelin, K.
    Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden; Department of Breast and Endocrine Surgery, Karolinska University Hospital, Stockholm, Sweden.
    Breast surgeons performing immediate breast reconstruction with implants - Assessment of resource-use and patient-reported outcome measures2012In: Breast, ISSN 0960-9776, E-ISSN 1532-3080, Vol. 21, no 4, 590-596 p.Article in journal (Refereed)
    Abstract [en]

    Oncoplastic surgery, including immediate breast reconstruction (IBR), is expanding as a result of public demand. IBR in women with breast carcinoma is resource intense and the reconstruction is often completed concurrently with adjuvant oncological treatment. A series of 223 patients with implant-based IBRs, performed by breast surgeons 2005-2008, were analysed for use of resources and outcome. Low overall major complication rates (19,7%) were identified, even though 41% of the patients had received post-mastectomy radiation. A total of 1.1 reoperations per patient were required. Patient-reported outcomes using the EQ-5D and a disease-specific questionnaire at a median of four years follow-up were analysed. Patients' general health-state was high (0.83), whereas negative impact on intimate situations and the sensibility of the breast was reported. Our audit concludes that trained breast surgeon specialists perform implant-based IBRs with a satisfactory outcome when evaluated by subjective and objective analyses. (c) 2012 Elsevier Ltd. All rights reserved.

  • 42.
    Rustøen, Tone
    et al.
    Division of Emergencies and Critical Care, Department of Research and Development, Oslo University Hospital Ullevål, Oslo, Norway; Lovisenberg Diaconal University College, Oslo, Norway .
    Geerling, Jenske I.
    University Medical Centre Groningen, Groningen, Netherlands .
    Pappa, Theodora
    Ag. Anargyri Oncology Hospital, Athens, Greece .
    Rundström, Carina
    Department of Oncology, Section of Cancer Rehabilitation, Karolinska University Hospital, Stockholm, Sweden .
    Weisse, Isolde
    Eberhard Karls University Tübingen, Department of Gynaecological Oncology, Tubingen, Germany .
    Williams, Sian C.
    Division of Health and Medical Sciences, University of Surrey, Guildford, Surrey, United Kingdom .
    Zavratnik, Bostjan
    Institute of Oncology, Ljubljana, Slovenia .
    Kongsgaard, Ulf E.
    Medical Faculty, University of Oslo, Norway .
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology, Care Science and Society, Division of Nursing, Huddinge, Stockholm, Sweden .
    A European survey of oncology nurse breakthrough cancer pain practices2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 1, 95-100 p.Article in journal (Refereed)
    Abstract [en]

    Purpose of the research: Breakthrough cancer pain (BTCP) is a prevalent type of pain in which the nurse can play an important role in improving patients' pain symptoms and overall well-being. Nurses' experience with BTCP (number of patients, and estimates of severity and frequency), the treatment of BTCP (pharmacological and nonpharmacological treatments normally used), ratings of the importance of treatment factors, and reasons given for not advising patients to take strong painkillers are presented in the present paper.

    Methods and sample: Nurses from 12 European countries, who cared for patients with cancer, took part in a survey. In total 1618 nurses were recruited and 1241 completed the survey questionnaire.

    Key results: Almost 90% of the nurses were female, and 50.4% had >9 years of experience in oncology nursing. The majority of the nurses (47%) said that a patient typically suffered from BTCP 2-3 times a day, and the severity of the pain for the patients was described as severe by 75.5%. In all, 38.4% of the nurses were unaware that medications specifically intended for treatment of BTCP exist, and 57% reported that oral opioids were normally prescribed for BTCP at their workplace. While 38% said they did not use nonpharmacological treatments for BTCP, the most common treatment approach was positional change (used by 76.6%). The treatment varied between the European countries.

    Conclusion: Patients do not receive the appropriate medical treatment for their BTCP. Nurses need better training about BTCP in general, and BTCP assessment and management specifically. (C) 2012 Elsevier Ltd. All rights reserved.

  • 43.
    Rustøen, Tone
    et al.
    Division of Emergencies and Critical Care, Department of Research and Development, Ullevål, Oslo University Hospital, Postbox 4956, Nydalen, Oslo, Norway; Lovisenberg Diaconal University College, Oslo, Norway.
    Geerling, Jenske I.
    University Medical Centre Groningen, Groningen, The Netherlands.
    Pappa, Theodora
    Ag. Anargyri Oncology Hospital, Greece.
    Rundström, Carina
    Department of Oncology, Section of Cancer Rehabilitation, Karolinska University Hospital, Karolinska, Stockholm, Sweden.
    Weisse, Isolde
    Eberhard Karls University Tübingen, Department of Gynaecological Oncology,Tübingen, Germany.
    Williams, Sian C.
    Division of Health and Medical Sciences, University of Surrey, Guildford, Surrey, United Kingdom.
    Zavratnik, Bostjan
    Institute of Oncology, Ljubljana, Slovenia.
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology, Care Science and Society, Division of Nursing, Huddinge, Sweden.
    How nurses assess breakthrough cancer pain, and the impact of this pain on patients' daily lives: results of a European survey2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 4, 402-407 p.Article in journal (Refereed)
    Abstract [en]

    Purpose: To increase our knowledge of how nurses assess breakthrough cancer pain (BTCP); and whether they find it difficult to distinguish BTCP from background pain; how they estimate the impact of BTCP on patients' daily lives, and the factors that nurses consider to induce BTCP. Variations in their use of assessment tools and their ability to distinguish between different types of pain were also examined in terms of the number of years of oncology nursing experience and the practice in different countries. Methods: In total, 1241 nurses (90% female) who care for patients with cancer, from 12 European countries, completed a survey questionnaire. Key results: Half the sample had >9 years of experience in oncology nursing. Although 39% had no pain assessment tool to help them distinguish between types of pain, 95% of those who used a tool found it useful. Furthermore, 37% reported that they had problems distinguishing background pain from BTCP. Movement was identified as the factor that most commonly exacerbated BTCP across all countries. The nurses reported that BTCP greatly interfered with patients' everyday activities, and they rated the patients' enjoyment of life as most strongly affected. The use of tools and the ability to distinguish between different pains varied between European countries and with years of experience in oncology nursing. Conclusions: The nurses reported that BTCP greatly interfered with patients' lives, and many nurses had problems distinguishing between background pain and BTCP. Nurses require more knowledge about BTCP management, and guidelines should be developed for clinical use. (C) 2012 Elsevier Ltd. All rights reserved.

  • 44.
    Rustøen, Tone
    et al.
    Oslo Univ Hosp, Div Emergencies & Crit Care, Dept Res & Dev, N-0424 Oslo, Norway.
    Wengström, Yvonne
    Karolinska Inst, Dept Neurobiol Care Sci & Soc, Div Nursing, Huddinge, Sweden.
    Zavratnik, Bostjan
    Inst Oncol, Ljubljana, Slovenia.
    Rundström, Carina
    Karolinska Inst, Clin Oncol, Solna, Sweden.
    Weisse, Isolde
    Univ Frauenklin Tubingen, Clin Oncol, Tubingen, Germany.
    Geerling, Jenske
    Univ Groningen, Univ Med Ctr Groningen, NL-9713 AV Groningen, Netherlands.
    Williams, Sian
    Univ Surrey, Fac Hlth & Med Sci, Guildford GU2 5XH, Surrey, England.
    Pappa, Theodora
    Hellen Nurses Assoc, Sect Oncol Nursing, Athens, Greece.
    A European survey of oncology nurse breakthrough cancer pain practices2011In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 47, S302-S302 p.Article in journal (Refereed)
  • 45.
    Stake-Nilsson, Kerstin
    et al.
    University of Gavle, Gavle, Sweden .
    Hultcrantz, Rolf
    Karolinska University Hospital, Stockholm, Sweden .
    Unge, Peter
    VP Novartis Pharma AG, Basel, Switzerland.
    Wengström, Yvonne
    Karolinska Institutet, Stockholm, Sweden .
    Changes in symptoms and lifestyle factors in patients seeking healthcare for gastrointestinal symptoms: an 18-year follow-up study2013In: European Journal of Gastroenterology and Hepathology, ISSN 0954-691X, E-ISSN 1473-5687, Vol. 25, no 12, 1470-1477 p.Article in journal (Refereed)
    Abstract [en]

    Background: Gastrointestinal symptoms and lifestyle change over time. The data from this 18-year longitudinal study are intended to further elucidate the long-term natural course of functional gastrointestinal (GI) symptoms and possible influencing factors.

    Aim: The aim of this study was to evaluate the correlation between lifestyle factors over time by reassessing symptom profiles in patients who presented with GI symptoms in 1990.MethodThe study population comprises a subset of individuals enrolled in the Swedish Dyspepsia Study, which commenced in 1990. In 1990, each participant in the Swedish Dyspepsia Study underwent physical assessment and completed a computer-based questionnaire on eight GI symptoms and lifestyle factors. An identical questionnaire was completed in 2008.

    Results: In total, 137 participants, 85 women and 52 men, were included in the follow-up study. None of the symptoms increased in frequency. Four of the symptoms decreased in frequency: abdominal pain [odds ratio (OR) 2.70], flatulence (OR 4.09), nausea (OR 3.05), and acid regurgitation (OR 1.59). Significant lifestyle changes included increased BMI (P<0.0001), decreased tobacco smoking (P<0.0001), and milk drinking (P=0.0080). Increased exercise was correlated with a decrease in acid regurgitation (OR 3.05) and vomiting (OR 7.38), but an increase in diarrhea (OR 0.23) and nausea (OR 0.33). Decreased smoking was correlated with a decrease in acid regurgitation (OR 3.45) and heartburn (OR 2.91).

    Conclusion: The results indicated that the lifestyle changes in the studied population followed the same pattern as seen in the general population, and changes in lifestyle factors may have an impact on GI symptoms and may guide symptom management in the patient, all in order to reduce personal suffering and healthcare costs in the form of fewer visits to the doctor and lower numbers of drug prescriptions. (C) 2013 Wolters Kluwer Health vertical bar Lippincott Williams & Wilkins.

  • 46.
    Stake-Nilsson, Kerstin
    et al.
    Department of Medicine, Karolinska Institute, University of Gavle.
    Hultcrantz, Rolf
    Karolinska University Hospital, Stockholm, Sweden; .
    Unge, Peter
    Novartis, Basel, Switzerland.
    Wengström, Yvonne
    Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Complementary and alternative medicine used by persons with functional gastrointestinal disorders to alleviate symptom distress2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 5-6, 800-808 p.Article in journal (Refereed)
    Abstract [en]

    Aim. The aim of this study was to describe the complementary and alternative medicine methods most commonly used to alleviate symptom distress in persons with functional gastrointestinal disorders. Background. People with functional gastrointestinal disorders face many challenges in their everyday lives, and each individual has his/her own way of dealing with this illness. The experience of illness often leads persons with functional gastrointestinal disorders to complementary and alternative medicine as a viable healthcare choice. Design. Quantitative and describing design. Method. A study-specific complementary and alternative medicine questionnaire was used, including questions about complementary and alternative medicine methods used and the perceived effects of each method. Efficacy assessments for each method were preventive effect, partial symptom relief, total symptom relief or no effect. Results. A total of 137 persons with functional gastrointestinal disorders answered the questionnaire, 62% (n = 85) women and 38% (n = 52) men. A total of 28 different complementary and alternative medicine methods were identified and grouped into four categories: nutritional, drug/biological, psychological activity and physical activity. All persons had tried at least one method, and most methods provided partial symptom relief. Conclusion. Persons with functional gastrointestinal disorders commonly use complementary and alternative medicine methods to alleviate symptoms. Nurses have a unique opportunity to expand their roles in this group of patients. Relevance to clinical practice. Increased knowledge of complementary and alternative medicine practices would enable a more comprehensive patient assessment and a better plan for meaningful interventions that meet the needs of individual patients.

  • 47.
    Sundberg, K.
    et al.
    Karolinska Institutet, Neurobiology Caring Sciences and Society, Huddinge, Sweden.
    Langius [Langius-Eklöf], Ann
    Karolinska Institutet, Neurobiology Caring Sciences and Society, Huddinge, Sweden.
    Blomberg, Karin
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Isaksson, Ann-Kristin
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Wengström, Yvonne
    Karolinska Institutet, Neurobiology Caring Sciences and Society, Huddinge, Sweden.
    Feasibility and acceptability of an interactive mobile phone application for early detection of patient reported symptom distress in prostate cancer2013In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 49, S280-S280 p.Article in journal (Refereed)
    Abstract [en]

    Introduction: For immediate and continuous dialogue between patients and caregivers new approaches in modern technology are encouraged today. In cooperation with a Swedish health management company, we developed an interactive mobile phone application for the assessment of symptom distress, evidence-based self-care advice and an alerting function of severe symptoms with instant access to professionals in real time. By using this technique patients can communicate symptoms with instant support while cared for out-side hospital but at the same time reassured that their condition is monitored by the professionals. The objective of this study was to evaluate the feasibility and acceptability of the application for patients with prostate cancer during radiotherapy and for the involved health care staff.

    Material and Methods: Evidence-based symptoms and related selfcareadvices were implemented in the application after literature review and interviews with patients and health care professionals. Nine patients diagnosed with prostate cancer undergoing radiotherapy treatment were recruited to test the application for two weeks. The patients reported in the electronic symptom questionnaire daily. After the two weeks they were interviewed about their experience. Nurses directly involved in the care and treatment of the participating patients were interviewed at the end of study.

    Results: Overall, patients and nurses reported positive experiences of using the mobile phone system. The patients considered the application helpful and easy to use although there were some suggestions for further development of the electronic questionnaire. Most of the patients had read the self-care advice and found them useful. The alerting system was activated in several cases; the nurses found it useful to identify and manage problematic symptoms early and the patients felt safe and well cared for. Some of the nurses considered the monitoring system time-consuming and made suggestions for improvement.

    Conclusions: Both patients and nurses could see the potential for using the mobile application in clinical practice. The system enables the involvement of the patients and the alerts showed problematic symptoms promoting timely interventions. The results support further development and testing of the system in full-scale.

  • 48.
    Sundberg, Kay
    et al.
    Department of NVS, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Eklöf, Ann Langius
    Department of NVS, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Blomberg, Karin
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Isaksson, Ann-Kristin
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Wengström, Yvonne
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Feasibility of an interactive ICT-platform for early assessment and management of patient-reported symptoms during radiotherapy for prostate cancer2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 5, 523-528 p.Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim of this study was to test the feasibility and acceptability of an Information and Communication Technology platform for assessing and managing patient reported symptoms during radiotherapy for prostate cancer.

    Methods: In cooperation with a health management company, using a patient experience co-design, we developed the platform operated by an interactive application for reporting and managing symptoms in real time. Nine patients diagnosed with prostate cancer and receiving radiotherapy were recruited from two university hospitals in Sweden. Evidence-based symptoms and related self-care advice specific to prostate cancer were implemented in the application based on a literature review and interviews with patients and health care professionals. In the test of the platform the patients reported symptoms, via a mobile phone, daily for two weeks and were afterwards interviewed about their experiences.

    Results: Overall, the patients found the symptom questionnaire and the self-care advice relevant and the application user friendly. The alert system was activated on several occasions when the symptoms were severe leading to a nurse contact and support so the patients felt safe and well cared for.

    Conclusions: The platform enabled increased patient involvement and facilitated symptom assessment and communication between the patient and the health care provider. The study's results support further development of the platform, as well as tests in full-scale studies and in other populations.

  • 49.
    Tengvall, Oili
    et al.
    Department of Molecular Medicine and Surgery, Section of Reconstructive Plastic Surgery, Karolinska Institutet, Stockholm, Sweden;.
    Wickman, Marie
    Department of Molecular Medicine and Surgery, Section of Reconstructive Plastic Surgery, Karolinska Institutet, Stockholm, Sweden;.
    Wengström, Yvonne
    Cancer Care Research Center, Stirling University, Scotland, United Kingdom; Division of Nursing, NVS, Karolinska Institutet, Stockholm, Sweden.
    Memories of pain after burn injury: the patient's experience2010In: Journal of Burn Care & Research, ISSN 1559-047X, E-ISSN 1559-0488, Vol. 31, no 2, 319-327 p.Article in journal (Refereed)
    Abstract [en]

    Pain after burns is a major clinical problem and researchers continue to report that burn pain remains undertreated. Adequate pain management could contribute to the prevention of post-traumatic stress disorder and can give a growing sense of patients' self-confidence and strength. Freedom from pain might be unrealistic, but the objective should be to reduce pain as much as possible. The purpose of this study was to describe burn patients' experiences and memories of pain during burn care and to acquire a deeper understanding of how patients cope with the experience. The study method was qualitative and interviews were conducted with 12 adult burn patients ( eight men and four women) 6 to 12 months postburn (mean = 7 months). The mean burn size for the group was 10.6% mean of TBSA and the mean stay in hospital was 16 days. The interviews were analyzed using Kvales' method for structuring analysis. The patients' experiences and memories of pain during the trajectory of care were clearly described by the informants during the interviews. Four themes were identified for pain: becoming aware of pain, allowing oneself to feel pain, different pain experiences, and fragile body surface. Four themes were identified for coping: pragmatic coping, allowing someone to care for you, carrying the pain, and perspectives on the trauma. Both good and bad memories were recorded during the care trajectory, and it is evident that the patient has to carry the pain experience by themselves to a large extent. (J Burn Care Res 2010;31:319-327)

  • 50.
    Viklund, Pernilla
    et al.
    Unit of Esophageal and Gastric Research, Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.
    Wengström, Yvonne
    Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden.
    Lagergren, Jesper
    Unit of Esophageal and Gastric Research, Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.
    Supportive care for patients with oesophageal and other upper gastrointestinal cancers: The role of a specialist nurse in the team2006In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 10, no 5, 353-363 p.Article in journal (Refereed)
    Abstract [en]

    The care pathway of patients with upper gastrointestinal cancers is complex. We retrospectively evaluated the patients' opinions of support and supportive care given by a specialist nurse who Led the care of such patients. A study-specific questionnaire addressed the support given by the specialist nurse and other professionals in the team before, during and after treatment. Virtually all 73 responders considered the support of the specialist nurse important (87-94%). This support seemed more appreciated than that of outpatient clinic (P = 0.00) and surgical ward staff (P = 0.01) during the diagnostic phase, and during the follow-up it became more important than that of all other team professionals. A second study-specific questionnaire assessed the supportive care. Of 49 patients, 71-94% completely agreed that the supportive care given by the specialist nurse was satisfactory, and 90-100% considered it important. Whereas 10% had difficulty in understanding physicians' information, none had such problems regarding information given by the nurse (P = 0.09). Review of documented contacts between the specialist nurse and 75 patients with oesophago-gastric cancer revealed that contacts were frequent during follow-up, and nutritional problems predominated. Thus, specialist nurses can be recommended as leaders of the care pathway of patients with upper gastrointestinal cancers. (c) 2006 Elsevier Ltd. All rights reserved.

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