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  • 1.
    Ancillotti, Mirko
    et al.
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Veldwijk, Jorien
    Nederländerna.
    Nihlén Fahlquist, Jessica
    Uppsala universitet.
    Andersson, Dan I
    Uppsala universitet.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions.2018In: BMC Public Health, ISSN 1471-2458, E-ISSN 1471-2458, Vol. 18, no 1, article id 1153Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: High consumption of antibiotics has been identified as an important driver for the increasing antibiotic resistance, considered to be one of the greatest threats to public health globally. Simply informing the public about this consequence is insufficient to induce behavioral change. This study explored beliefs and perceptions among Swedes, with the aim of identifying factors promoting and hindering a judicious approach to antibiotics use. The study focused primarily on the medical use of antibiotics, also considering other aspects connected with antibiotic resistance, such as travelling and food consumption.

    METHODS: Data were collected through focus group discussions at the end of 2016. Twenty-three Swedes were recruited using an area-based approach and purposive sampling, aiming for as heterogeneous groups as possible regarding gender (13 women, 10 men), age (range 20-81, mean 38), and education level. Interview transcripts were analyzed using qualitative content analysis. The Health Belief Model was used as a theoretical framework.

    RESULTS: Antibiotic resistance was identified by participants as a health threat with the potential for terrible consequences. The severity of the problem was perceived more strongly than the actual likelihood of being affected by it. Metaphors such as climate change were abundantly employed to describe antibiotic resistance as a slowly emerging problem. There was a tension between individual (egoistic) and collective (altruistic) reasons for engaging in judicious behavior. The individual effort needed and antibiotics overprescribing were considered major barriers to such behavior. In their discussions, participants stressed the need for empowerment, achieved through good health communication from authorities and family physicians.

    CONCLUSIONS: Knowledge about antibiotic consumption and resistance, as well as values such as altruism and trust in the health care system, has significant influence on both perceptions of individual responsibility and on behavior. This suggests that these factors should be emphasized in health education and health promotion. To instead frame antibiotic resistance as a slowly emerging disaster, risks diminish the public perception of being susceptible to it.

  • 2.
    Eriksson, Stefan
    et al.
    Uppsala universitet.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Andersson, Lars
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Helgesson, Gert
    Karolinska institutet.
    How to counter undeserving authorship2018In: Insights: the UKSG journal, E-ISSN 2048-7754, Vol. 31, no 1, p. 1-6Article in journal (Refereed)
    Abstract [en]

    The average number of authors listed on contributions to scientific journals has increased considerably over time. While this may be accounted for by the increased complexity of much research and a corresponding need for extended collaboration, several studies suggest that the prevalence of non-deserving authors on research papers is alarming. In this paper a combined qualitative and quantitative approach is suggested to reduce the number of undeserving authors on academic papers: 1) ask scholars who apply for positions to explain the basics of a random selection of their co-authored papers, and 2) in bibliometric measurements, divide publications and citations by the number of authors.

  • 3.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Cancerpatienter i kliniska prövningar.2016In: Onkologi i Sverige, ISSN 1653-1582, no 1, p. 16-25Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Var tredje person i Sverige kommer under sin livstid att drabbas av cancer, vilket innebär att cancer är en folksjukdom. Stora summor pengar läggs ner på cancerforskning. Många säger att det inte alls är en omöjlig uppgift att besegra cancer, medan andra säger att det kommer att bli mycket svårt. Säkert är dock att om forskningen ska gå framåt krävs mycket pengar och hängivna forskare. Men intebara det. En grundförutsättning för att vi ska kunna få fram nya eller bättre cancerbehandlingar är att nya substanser testas på patienter i läkemedelsstudier, så kallade kliniska prövningar. Om inte patienter vill delta i medicinsk forskning kommer inte cancerforskningen att lyckas. Det är därför viktigt att undersöka hur patienter ser på deltagande i läkemedelsforskning. Trots att många cancerpatienter i Sverige deltar i läkemedelsstudier finns det väldigt lite forskning om varför de väljer att delta, om de förstått informationen de fått och hur de upplever sitt deltagande.

  • 4.
    Godskesen, Tove
    Uppsala universitet.
    Patients in Clinical Cancer Trials: Understanding, Motivation and Hope2015Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis was to study participants' understanding of clinical cancer trials,and their motivation for participation. Of particular interest was the question of whether thepatients hoped for a cure resulting from the trial. The thesis was based on four studies andused three methods: interviews, a questionnaire, and empirical bioethics. The results of Study Iindicated that the participants in phase 1 trials understood most of the information provided, butwere unaware of both the very small potential for treatment benefit, and the risk of harm. Patientsin phase 3 trials had a good understanding of the trial, except regarding side effects and their rightto withdraw. Some found it hard to ask questions and felt they needed more information (StudyIII). The participants in phase 1 trials were strongly motivated by the generally unrealistic hopefor therapeutic benefit (Study I). When the chances of a cure are minuscule, as for participantswith end-stage cancer in phase 1 trials, hope can play an important, positive role and offermeaning to one’s remaining life. However, hope for an unrealistic outcome could also deprivepatients of an opportunity to spend their remaining lives, as they would otherwise choose(Study II). The participants in phase 3 trials indicated that their motivation for participationwas multifaceted; the most common motivations included hope of therapeutic benefit, altruism,access to extra clinical examinations or better care, and a wish to repay society for the helpthey had received (Study III). After stratifying and analysing the motivation data by gender,age, education and previous experience of trial participation, males and those aged ≥65 yearswere significantly more motivated to participate out of a desire to reciprocate the help theyhad received, either because of a sense of duty or because their families or friends consideredthat they should attend (Study IV). In conclusion, the informed consent process seems to workrelatively well, with good results within most subgroups. However, patients with end-stagecancer who are participating in phase 1 trials are a vulnerable group as they have very littlepotential for treatment benefit coupled with a tangible risk of harm.

  • 5.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    God vård innebär att sällsynta sjukdomar ges resurser.2018In: Dagens Medicin, ISSN 1104-7488Article in journal (Other (popular science, discussion, etc.))
  • 6.
    Godskesen, Tove E
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Fernow, Josepine
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway.2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, article id e12937Article in journal (Refereed)
    Abstract [en]

    Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information available to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the documents were misleading in part. Furthermore, the descriptions provided almost no information about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple measures like readability testing can be useful as an indicator of text quality.

  • 7.
    Godskesen, Tove E.
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Suzanne, Petri
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    Eriksson, Stefan
    Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Halkoaho, Arja
    Tampere University of Applied Sciences, Finland.
    Mangset, Margrete
    Oslo universitetssykehus, Oslo University Hospital, Norway.
    Engelbak Nielsen, Zandra
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views2019In: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101XArticle in journal (Refereed)
    Abstract [en]

    We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.

  • 8.
    Godskesen, Tove E.
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Suzanne, Petri
    Danmark.
    Eriksson, Stefan
    Uppsala universitet.
    Halkoaho, Arja
    Finland.
    Mangset, Margrete
    Norge.
    Pirinen, Merja
    Finland.
    Engelbak Nielsen, Zandra
    Danmark.
    When Nursing Care and Clinical Trials Coincide: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges2018In: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, Vol. 13, no 5, p. 475-485Article in journal (Refereed)
    Abstract [en]

    This study investigated the kinds of ethical challenges experienced by nurses in oncology and hematology when nursing care and research overlap in clinical trials, and how the nurses handle such challenges. Individual interviews with 39 nurses from Sweden, Denmark, and Finland indicated that all nurses were positive about research, considering it essential for developing the best care. Ethical challenges exist, however; the most difficult were associated with the end-of-life patients, no longer responsive to standard therapy, who eagerly volunteer for cutting-edge drug trials in the hope of gaining therapeutic benefit. Many nurses lacked systematic strategies for addressing such challenges but found support from their nursing colleagues and relied on the research protocols to guide them.

  • 9.
    Godskesen, Tove
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Selektiv rapportering av kliniska prövningar2019In: Dagens Medicin, ISSN 1402-1943Article in journal (Other (popular science, discussion, etc.))
  • 10.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Hansson, M G
    Uppsala universitet.
    Nygren, P
    Uppsala universitet.
    Nordin, K
    Uppsala universitet, Universitetet i Bergen.
    Kihlbom, U
    Uppsala universitet.
    Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials.2015In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, no 1, p. 133-41Article in journal (Refereed)
    Abstract [en]

    It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.

  • 11.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Kihlbom, U
    Uppsala universitet.
    Nordin, K
    Uppsala universitet, Universitetet i Bergen.
    Silén, M
    Uppsala universitet.
    Nygren, P
    Uppsala universitet.
    Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials.2016In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, no 3, p. 516-23Article in journal (Refereed)
    Abstract [en]

    While participants in clinical oncology trials are essential for the advancement of cancer therapies, factors decisive for patient participation have been described but need further investigation, particularly in the case of phase 3 studies. The aim of this study was to investigate differences in trial knowledge and motives for participation in phase 3 clinical cancer trials in relation to gender, age, education levels and former trial experience. The results of a questionnaire returned from 88 of 96 patients (92%) were analysed using the Mann-Whitney U-test. There were small, barely relevant differences in trial knowledge among patients when stratified by gender, age or education. Participants with former trial experience were less aware about the right to withdraw. Male participants and those aged ≥65 years were significantly more motivated by a feeling of duty, or by the opinions of close ones. Men seem more motivated than women by external factors. With the awareness that elderly and single male participants might be a vulnerable group and participants with former trial experience are less likely to be sufficiently informed, the information consent process should focus more on these patients. We conclude that the informed consent process seems to work well, with good results within most subgroups.

  • 12.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Kihlbom, Ulrik
    Uppsala universitet.
    "I Have a Lot of Pills in My Bag, You Know": Institutional Norms in the Provision of Hope in Phase I Clinical Cancer Trials.2017In: Journal of oncology practice, ISSN 1935-469X, Vol. 13, no 10, p. 679-682Article in journal (Refereed)
  • 13.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Nygren, Peter
    Uppsala universitet.
    Nordin, Karin
    Uppsala universitet, Universitetet i Bergen.
    Hansson, Mats
    Uppsala universitet.
    Kihlbom, Ulrik
    Uppsala universitet.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, no 11, p. 3137-3142Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials.

    METHOD: A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis.

    RESULTS: The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable.

    CONCLUSIONS: Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

  • 14.
    Helgesson, Gert
    et al.
    Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management, and Ethics, Karolinska Insitutet, Stockholm.
    Bülow, William
    Department of Philosophy, Stockholm University.
    Eriksson, Stefan
    Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Should the deceased be listed as authors?2019In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, no 0, p. 1-8Article in journal (Refereed)
    Abstract [en]

    Sometimes participants in research collaborationdie before the paper is accepted for publication. Thequestion we raise in this paper is how authorship shouldbe handled in such situations. First, the outcome of aliterature survey is presented. Taking this as our startingpoint, we then go on to discuss authorship of the deadin relation to the requirements of the Vancouver rules.We argue that in principle the deceased can meet therequirements laid down in these authorship guidelines.However, to include a deceased researcher as authorrequires a strong justification. The more the person has been involved in the research and writing process beforehe or she passes away, the stronger the justification forinclusion.

  • 15.
    Rejnö, Åsa
    et al.
    Högskolan Väst, Skaraborgs sjukhus Skövde.
    Ternestedt, Britt-Marie
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Nordenfelt, Lennart
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Silfverberg, Gunilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Dignity at stake: Caring for persons with impaired autonomy2019In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989Article in journal (Refereed)
    Abstract [en]

    Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect and protection from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient’s dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient’s wishes and needs are the starting point

  • 16.
    Skogeland, Ulrika
    et al.
    Karolinska institutet.
    de Monestrol, Isabelle
    Karolinska institutet.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Experiences of Individuals Awaiting Lung Transplantation2018In: Respiratory care, ISSN 0020-1324, E-ISSN 1943-3654, Vol. 63, no 12Article in journal (Refereed)
    Abstract [en]

    Lung transplantation is an established intervention for patients with advanced and life-threateningrespiratory disease. Unfortunately, the shortage of organ donors results in a need for organs thatgreatly exceeds availability. This narrative review aimed to investigate the experiences of patientswith respiratory diseases who wait for lung transplantation. Articles were retrieved from medicalliterature databases. Thirteen qualitative studies were reviewed, one of them used a mixed method.We found that individuals faced varied and complex situations differently while waiting for lung transplantations,depending on physical, psychological, social, and existential factors. Waiting gives hope fora future without the limitations imposed by the disease but also causes great stress. Many individualsstruggled with the existential guilt associated with the privilege of having access to transplantation. Thisreview highlighted that support from health-care professionals, next of kin, patients who had previouslyreceived a transplantation, and close friends have a vital role to play for individuals waiting for a lungtransplantation.

  • 17.
    Skogeland, Ulrika
    et al.
    Karolinska institutet.
    de Monestrol, Isabelle
    Karolinska institutet.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala Universitet.
    WS18.1 Waiting for lung transplant, manifold experiences: a literature review2018Conference paper (Refereed)
  • 18.
    Spörndly, Robert
    et al.
    Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Eriksson, Stefan
    Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Representation of Ethnic Minoritites in Swedish Clinical Cancer Trials: A Qualitative Study of Physicians' Experiences2018In: Harvard Public Health Review, Vol. 20, p. 1-18Article in journal (Refereed)
    Abstract [en]

    International literature shows ethnic minorities and immigrants being underrepresented in clinical trials. This compromises the generalizability of the results and distributes the benefits of participating unequally. This problem is unexplored in Sweden. Therefore, this explorative qualitative study examines the barriers Swedish physicians encounter, the strategies they use to prevent and circumvent the issue, and the attitudes and perceptions they have. We found that physicians do encounter ethnic minority patients that they exclude from participation in clinical cancer trials. This is primarily because of language barriers preventing patients from understanding participant information. Conscious strategies to counter this are lacking. A lack of translated material and strict inclusion criteria are two obstacles that can be overcome. The general conception is that this issue is uncommon and unimportant from a medical perspective, but questions of fairness have been raised. For such reasons, further discussion and research on this issue are needed.

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