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  • 1.
    Ancillotti, Mirko
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Andersson, Dan I.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinsk biokemi och mikrobiologi.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke University College.
    Nihlén Fahlquist, Jessica
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Veldwijk, Jorien
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Erasmus University Rotterdam.
    Preferences regarding antibiotic treatment and the role of antibiotic resistance: a discrete choice experiment2020Ingår i: International Journal of Antimicrobial Agents, ISSN 0924-8579, E-ISSN 1872-7913, Vol. 56, nr 6, artikel-id 106198Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives: To identify preferences of the Swedish public regarding antibiotic treatment characteristics and the relative weight of antibiotic resistance in their treatment choices.

    Methods: A questionnaire including a discrete choice experiment questionnaire was answered by 378 Swedish participants. Preferences of the general public regarding five treatment characteristics (attributes) were measured: contribution to antibiotic resistance, cost, side effects, failure rate and treatment duration. Latent class analysis models were used to determine attribute-level estimates and heterogeneity in preferences. Relative importance of the attributes and willingness to pay for antibiotics with a lower contribution to antibiotic resistance were calculated from the estimates.

    Results: All attributes influenced participants’ preferences for antibiotic treatment. For the majority of participants, contribution to antibiotic resistance was the most important attribute. Younger respondents found contribution to antibiotic resistance more important in their choice of antibiotic treatments. Choices of respondents with lower numeracy, higher health literacy and higher financial vulnerability were influenced more by the cost of the antibiotic treatment. Older respondents with lower financial vulnerability and health literacy, and higher numeracy found side effects to be most important.

    Conclusions: All attributes can be considered as potential drivers of antibiotic use by lay people. Findings also suggest that the behaviour of lay people may be influenced by concerns over the rise of antibiotic resistance. Therefore, stressing individual responsibility for antibiotic resistance in clinical and societal communication has the potential to affect personal decision making.

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  • 2.
    Ancillotti, Mirko
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke University College.
    Andersson, Dan I.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinsk biokemi och mikrobiologi.
    Nihlén Fahlquist, Jessica
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance2021Ingår i: Public Health Ethics, ISSN 1754-9973, E-ISSN 1754-9981, Vol. 14, nr 1, s. 1-11, artikel-id phaa033Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people’s views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants’ views.

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  • 3.
    Ancillotti, Mirko
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Teologiska fakulteten, Teologiska institutionen.
    Veldwijk, Jorien
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Institute of Health Policy and Management, Erasmus University, Bayle (J) building - Campus Woudestein, Burgemeester Oudlaan 50, 3062 PA Rotterdam, The Netherlands.
    Nihlén Fahlquist, Jessica
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Andersson, Dan I
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinsk biokemi och mikrobiologi.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Ersta Sköndal Bräcke högskola, Stigbergsgatan 30, 100 61 Stockholm, Sweden.
    Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions2018Ingår i: BMC Public Health, E-ISSN 1471-2458, Vol. 18, nr 1, artikel-id 1153Artikel i tidskrift (Refereegranskat)
    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.

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  • 4.
    Beyermann, Alexandra
    et al.
    Division of Caring Science, School of Health, Care and Social Welfare, Mälardalen University, Eskilstuna, Sweden.
    Asp, Margareta
    Division of Caring Science, School of Health, Care and Social Welfare, Mälardalen University, Eskilstuna, Sweden.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University.
    Söderman, Mirkka
    Division of Caring Science, School of Health, Care and Social Welfare, Mälardalen University, Eskilstuna, Sweden.
    Nurses' challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study2023Ingår i: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, nr 1, artikel-id 2238984Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Being a family member to someone who has amyotrophic lateral sclerosis (ALS) is demanding and often requires sacrificing a lot. Family members can experience fatigue, anxiety, guilt and need support. The aim was to explore registered nurses’ (RNs’) experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC).

    Methods: A qualitative explorative design. Interviews were conducted with RNs (n = 11) from five SPHCs in Sweden and analysed using qualitative content analysis.

    Results: The results emerged in the following categories:” To support in an increasingly difficult everyday life”, based on the sub-categories: “Creating a trusting relationship”, “Balancing between the needs of patients and their families”, and “Sharing knowledge about dying to the families”;” To support in emotionally challenging situations”, based on the sub-categories: “Harbouring family members’ difficult feelings”, “Providing support even though the situation is unpleasant” and “Being able to give support by receiving confirmation and support from others”.

    Conclusions: RNs working in SPHC have an important role in providing support in several ways to the families of patients with ALS, through facilitating their everyday life and giving emotional support when needed, based on the needs of both patients and their families.

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  • 5.
    Bülow, William
    et al.
    Department of Philosophy, Stockholms Universitet, Stockholm, Sweden .
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden .
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden .
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Why unethical papers should be retracted2021Ingår i: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 47, nr 12, artikel-id e32Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The purpose of retracting published papers is to maintain the integrity of academic research. Recent work in research ethics has devoted important attention to how to improve the system of paper retraction. In this context, the focus has primarily been on how to handle fraudulent or flawed research papers, and how to encourage the retraction of papers based on honest mistakes. Less attention has been paid to whether papers that report unethical research – for example, research performed without appropriate concern for the moral rights and interests of the research participants – should be retracted. The aim of this paper is to examine to what extent retraction policies of academic journals and publishers address retractions of unethical research and to discuss critically various policy options and the reasons for accepting them. This paper starts by reviewing retraction policies of academic publishers. The results show that many journals do not have explicit policies for how to handle unethical research. Against this background, we discuss four normative arguments for why unethical research should be retracted. In conclusion, we suggest a retraction policy in light of our empirical and normative investigations.

  • 6.
    Engelbak Nielsen, Zandra
    et al.
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Schram Harsløf, Laurine Bente
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    Petri, Suzanne
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management, and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Mangset, Margrete
    Oslo universitetssykehus, Oslo University Hospital, Norway.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Ersta Sköndal Bräcke University College.
    Are cancer patients better off if they participate in clinical trials?: A mixed methods study2020Ingår i: BMC Cancer, ISSN 1471-2407, E-ISSN 1471-2407, Vol. 20, nr 1, artikel-id 401Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background

    Research and cancer care are closely intertwined; however, it is not clear whether physicians and nurses believe that clinical trials offer the best treatment for patients and, if so, whether this belief is justified. The aim of this study was therefore: (i) to explore how physicians and nurses perceive the benefits of clinical trial participation compared with standard care and (ii) whether it is justified to claim that clinical trial participation improves outcomes for cancer patients.

    Methods

    A mixed methods approach was used employing semi-structured interviews with 57 physicians and nurses in oncology and haematology and a literature review of the evidence for trial superiority, i.e. the idea that receiving treatment in a clinical trial leads to a better outcome compared with standard care. Inductive thematic analysis was used to examine the interview data. A literature review comprising nine articles was conducted according to a conceptual framework developed by Peppercorn et al. and evaluated recent evidence on trial superiority.

    Results

    Our findings show that many physicians and nurses make claims supporting trial superiority, however very little evidence is available in the literature comparing outcomes for trial participants and non-participants that supports their assertions.

    Conclusions

    Despite the recent rapid development and use of targeted therapy and immunotherapy, we find no support for trial participation to provide better outcomes for cancer patients than standard care. Hence, our present results are in line with previous results from Peppercorn et al. A weaker version of the superiority claim is that even if a trial does not bring about a direct positive effect, it brings about indirect positive effects. However, as the value of such indirect effects is dependent on the individual’s specific circumstances and preferences, their existence cannot establish the general claim that treatment in trials is superior. Belief in trial superiority is therefore unfounded. Hence, if such beliefs are communicated to patients in a trial recruitment context, it would provide misleading information. Instead emphasis should be on patients volunteering to give an altruistic contribution to the furthering of knowledge and to the potential benefit of future patients.

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  • 7.
    Eriksson, Stefan
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke Högskola.
    Andersson, Lars
    Ersta Sköndal Bräcke Högskola.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Karolinska institutet.
    How to counter undeserving authorship2018Ingår i: Insights: the UKSG journal, E-ISSN 2048-7754, Vol. 31, nr 1, s. 1-6Artikel i tidskrift (Refereegranskat)
    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.

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  • 8.
    Garbrielsson, Sebastian
    et al.
    Luleå University of Technology, Sweden.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke University College, Sweden.
    Predatory nursing journals: A case study of author prevalence and characteristics2021Ingår i: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 28, nr 5, s. 823-833Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Predatory publishing poses a fundamental threat to the development of nursing knowledge. Previous research has suggested that authors of papers published in predatory journals are mainly inexperienced researchers from low- and middle-income countries. Less attention has been paid to contributors from high-income countries.

    Aim: To describe the prevalence and characteristics of Swedish authors publishing in predatory nursing journals.

    Design: Quantitative descriptive case study.

    Participants and research context: Descriptive statistics were used to analyse the academic positions and academic affiliations of the authors of 39 papers published in predatory nursing journals during 2018 and 2019. Predatory nursing journals with Swedish contributors were identified by searching public listings of papers and applying a set of criteria. Journal site archives were used to identify additional papers with Swedish authors.

    Ethical considerations: This study was conducted in accordance with national regulations and ethical principles of research.

    Results: Almost two-thirds of Swedish authors publishing in predatory nursing journals hold senior academic positions. A small group of higher education institutions account for a majority of academic affiliations. Findings suggest that higher education institutions and experienced nursing researchers from Sweden make substantial contributions to predatory nursing journals, but that predatory publication habits might be concentrated in a limited number of academics and research milieus. A year-to-year comparison indicates that the prevalence of publishing in predatory journals might be diminishing.

    Discussion: Swedish nurse researchers help legitimize predatory journals, thus jeopardizing the trustworthiness of academic nursing knowledge. Substandard papers in predatory journals may pass as legitimate and be used to further academic careers. Experienced researchers are misleading junior colleagues, as joint publications might become embarrassments and liabilities.

    Conclusion: While the academic nursing community needs to address the problem of predatory publishing, there is some hope that educational efforts might have an effect on combating predatory publishing in nursing.

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  • 9.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    God vård innebär att sällsynta sjukdomar ges resurser2018Ingår i: Dagens MedicinArtikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
    Abstract [sv]

    Sverige behöver ta ett nationellt ansvar så att människor med sällsynta diagnoser också kan få ta del av forskning och nya läkemedel.

  • 10.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Patients in Clinical Cancer Trials: Understanding, Motivation and Hope2015Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    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 the patients hoped for a cure resulting from the trial. The thesis was based on four studies and used three methods: interviews, a questionnaire, and empirical bioethics. The results of Study I indicated that the participants in phase 1 trials understood most of the information provided, but were unaware of both the very small potential for treatment benefit, and the risk of harm. Patients in phase 3 trials had a good understanding of the trial, except regarding side effects and their right to withdraw. Some found it hard to ask questions and felt they needed more information (Study III). The participants in phase 1 trials were strongly motivated by the generally unrealistic hope for therapeutic benefit (Study I). When the chances of a cure are minuscule, as for participants with end-stage cancer in phase 1 trials, hope can play an important, positive role and offer meaning to one’s remaining life. However, hope for an unrealistic outcome could also deprive patients 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 participation was 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 help they 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 years were significantly more motivated to participate out of a desire to reciprocate the help they had received, either because of a sense of duty or because their families or friends considered that they should attend (Study IV). In conclusion, the informed consent process seems to work relatively well, with good results within most subgroups. However, patients with end-stage cancer who are participating in phase 1 trials are a vulnerable group as they have very little potential for treatment benefit coupled with a tangible risk of harm.

     

    Delarbeten
    1. Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation
    Öppna denna publikation i ny flik eller fönster >>Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation
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    2013 (Engelska)Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, nr 11, s. 3137-3142Artikel i tidskrift (Refereegranskat) Published
    Abstract [en]

    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. 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. 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. 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.

    Nyckelord
    Cancer, Clinical trials, Ethics, Sweden
    Nationell ämneskategori
    Medicin och hälsovetenskap
    Identifikatorer
    urn:nbn:se:uu:diva-210174 (URN)10.1007/s00520-013-1891-7 (DOI)000325390600024 ()
    Tillgänglig från: 2013-11-04 Skapad: 2013-11-04 Senast uppdaterad: 2018-08-02
    2. "I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials
    Öppna denna publikation i ny flik eller fönster >>"I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials
    2017 (Engelska)Ingår i: Journal of Oncology Pharmacy Practice, ISSN 1078-1552, E-ISSN 1477-092X, Vol. 13, nr 10, s. 679-682Artikel i tidskrift (Refereegranskat) Published
    Abstract [en]

    Hope of a miracle cure is often an important motive for participating in phase 1 clinical cancer trials. Communication of hope may stimulate patients to participate and may enhance their quality of life; however, it may also deprive them of an opportunity to spend the remainder of their lives as they wish. Much depends on the kind of hope involved. This article outlines three forms of hope entertained by trial participants that, in various ways, are triggered, enhanced or modified by institutional norms within health care. This has normative as well as clinical implications; the information threshold for informed consent to enter phase 1 trials should be higher than that for consenting to medical treatment or entering randomised, controlled, phase 3 trials, clarifying the demarcation between clinical treatment and research. A simultaneous care model that integrates both trial participation and palliative care could and should also be offered; this is in line with the recommendations of the WHO, which state that palliative care should be applicable early in the course of illness. 

    Nyckelord
    Clinical trials phase 1, cancer, palliative, hope
    Nationell ämneskategori
    Medicinsk etik Cancer och onkologi
    Forskningsämne
    Bioetik
    Identifikatorer
    urn:nbn:se:uu:diva-252879 (URN)10.1200/JOP.2017.021832 (DOI)000414677100014 ()28837376 (PubMedID)
    Forskningsfinansiär
    Cancerfonden
    Tillgänglig från: 2015-05-13 Skapad: 2015-05-13 Senast uppdaterad: 2018-08-02
    3. Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials
    Öppna denna publikation i ny flik eller fönster >>Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials
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    2015 (Engelska)Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, nr 1, s. 133-141Artikel i tidskrift (Refereegranskat) Published
    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.

    Nationell ämneskategori
    Annan medicin och hälsovetenskap
    Identifikatorer
    urn:nbn:se:uu:diva-224616 (URN)10.1111/ecc.12184 (DOI)000346768500014 ()24467443 (PubMedID)
    Tillgänglig från: 2014-05-15 Skapad: 2014-05-14 Senast uppdaterad: 2018-08-02
    4. Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials
    Öppna denna publikation i ny flik eller fönster >>Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials
    Visa övriga...
    2016 (Engelska)Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, nr 3, s. 516-523Artikel i tidskrift (Refereegranskat) Published
    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.

    Nyckelord
    adults, cancer, clinical trials, patient education, patient information, phase 3 trials
    Nationell ämneskategori
    Cancer och onkologi
    Identifikatorer
    urn:nbn:se:uu:diva-252539 (URN)10.1111/ecc.12319 (DOI)000375066900018 ()25904313 (PubMedID)
    Forskningsfinansiär
    Cancerfonden
    Tillgänglig från: 2015-05-08 Skapad: 2015-05-08 Senast uppdaterad: 2018-08-02
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  • 11.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University.
    Vi må ta en diskusjon om publiseringsvanvidd: Fagfellevurdering blir offeret for forskeres publiseringsiver2023Ingår i: Dagens medisin, ISSN 1501-4290, E-ISSN 1501-4304, Vol. 24/11Artikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
  • 12.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Nord Univ, Fac Nursing & Hlth Sci, Bodo, Norway..
    Björk, Joar
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Karolinska Inst, Stockholm Ctr Healthcare Eth CHE, Stockholm Ctr Healthcare Ethics CHE, Stockholm, Sweden.;Reg Kronoberg, Dept Res & Dev, Växjö, Sweden..
    Juth, Niklas
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Karolinska Inst, Stockholm Ctr Healthcare Eth CHE, Stockholm Ctr Healthcare Ethics CHE, Stockholm, Sweden..
    Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses' experiences2023Ingår i: Trials, E-ISSN 1745-6215, Vol. 24, artikel-id 801Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Clinical research nurses (CRNs) have first-hand experience with ethical challenges and play a crucial role in upholding ethical conduct and adherence to the principles of informed consent in clinical research. This study explores the ethical challenges encountered by CRNs in the process of obtaining informed consent for clinical research.

    Methods: A qualitative exploratory design. Semistructured interviews (n = 14) were conducted with diverse CRNs in Sweden. These CRNs covered a wide range of research fields, including pharmaceutical and academic studies, interventions, and observational research, spanning different trial phases, patient categories, and medical conditions. The interviews were analysed using inductive qualitative content analysis.

    Results:The analysis identified three main categories: (i) threats to voluntariness, (ii) measures to safeguard voluntariness, and (iii) questionable exclusion of certain groups. CRNs face challenges due to time constraints, rushed decisions, information overload, and excessive reliance on physicians' recommendations. Overestimating therapeutic benefits in stages of advanced illness emerged as a risk to voluntariness. CRNs outlined proactive solutions, such as allowing ample decision-making time and offering support, especially for terminally ill patients. Concerns were also voiced about excluding certain demographics, such as those with language barriers or cognitive impairments.

    Conclusions: In conclusion, upholding ethical research standards requires recognising various factors affecting patient voluntariness. Researchers and CRNs should prioritise refining the informed consent process, overcoming participation challenges, and aligning scientific rigour with personalised care. Additionally, a concerted effort is vital to meet the diverse needs of patient populations, including equitable inclusion of individuals with language barriers or cognitive limitations in clinical studies. These findings have significant implications for enhancing the ethics of clinical research and advancing person-centred care.

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  • 13.
    Godskesen, Tove E.
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke Högskola.
    Petri, Suzanne
    Copenhagen University Hospital.
    Eriksson, Stefan
    Copenhagen University Hospital.
    Halkoaho, Arja
    Tampere University of Applied Sciences.
    Mangset, Margrete
    Oslo University Hospital.
    Nielsen, Zandra E.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists' views2020Ingår i: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101X, Vol. 15, nr 1, s. 29-38Artikel i tidskrift (Refereegranskat)
    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.

  • 14.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke högskola.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Teologiska fakulteten, Teologiska institutionen.
    Selektiv rapportering av kliniska prövningar2019Ingår i: Dagens Medicin, nr 15/5Artikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
  • 15.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Marie Cederschiöld University, Stockholm, Sweden.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Oermann, Marilyn O
    School of Nursing, Duke University, Durham, North Carolina, USA.
    Gabrielsson, Sebastian
    Department of Health, Education and Technology, Luleå University of Technology.
    Predatory conferences: a systematic scoping review2022Ingår i: BMJ Open, E-ISSN 2044-6055, Vol. 12, nr 11, artikel-id e062425Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE: To systematically map the scholarly literature on predatory conferences and describe the presentstate of research and the prevalent attitudes about these conferences.

    METHODS: This scoping review follows Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases were searched (PubMed/Medline, Web of Science, Scopus and ProQuest SocialSciences Premium Collection). In addition, the included studies’ reference lists were scanned for additional papers  not found in the searches. Peer-reviewed publications were included irrespective of study design. Letters and commentary were included if they were peer reviewed. Editorials and literature reviews were excluded.

    RESULTS: From 809 initial publications, 20 papers were included in the review, from 12 countries and covered a wide range of science disciplines, from nursing/medicine to energy/technology and computer science. More than half were empirical and published after 2017. In most papers, a definition of the term predatory conferences was put forward. Spam email invitations with flattering language were the most common characteristics, and the conferences were often hosted by unknown organisations that used copied pictures without permission. High fees, lack of peer review, and a multidisciplinary scope were signal features. All papers explicitly or implicitly suggested possible reasons for participating in predatory conferences. Some reasons were related to the overall context of academic work, the nature of predatory conferences (eg, researchers falling prey to misleading information about a conference or choosing a conference based on an attractive location) and the personal characteristics of researchers. Only one paper reported empirically identified reasons for participating in predatory conferences. The three countermeasures proposed most frequently to deal with predatory conferences were increasing education, emphasising responsibilities of universities and funders, and publishing lists of predatory publishers associated with conferences.

    CONCLUSIONS: This review identified a scarcity of research concerning predatory conferences. Future empirical as well as fully analytical research should be encouraged by funders, journals and research institutions.

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  • 16.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Fernow, Josepine
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway2018Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, nr 6, artikel-id e12937Artikel i tidskrift (Refereegranskat)
    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 avail‐able 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 docu‐ments were misleading in part. Furthermore, the descriptions provided almost no in‐formation 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 meas‐ures like readability testing can be useful as an indicator of text quality.

  • 17.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College, Stocholm, Sweden.
    Frygner Holm, Sara
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Höglund, Anna T
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    YouTube as a source of information on clinical trials for paediatric cancer2023Ingår i: Information, Communication and Society, ISSN 1369-118X, E-ISSN 1468-4462, Vol. 26, nr 4, s. 716-729Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Little is known about the information parents of children with cancer find when searching for clinical trials information on YouTube. Thus, this study aimed to analyse the content, quality and reliability of YouTube videos focused on clinical trials for paediatric cancer. A descriptive cross-sectional design was used, and YouTube was searched using the phrases ‘clinical trials for children with cancer’ and ‘paediatric cancer clinical trials’. Videos that met inclusion criteria were assessed using the instruments Global Quality Scale and DISCERN. About half of the examined videos were in the GQS excellent-quality group and exhibited a total of 84,804 views. The mean time for videos was 5.7 minutes, they originated from the US or UK, were uploaded after 2016, and had a cancer centre/foundation or children hospital as video source. Half of them were focusing on early experimental trials and had a positive tone. Twenty percent were classified as useful without serious shortcomings, almost 50% as misleading with serious shortcomings, and 30% as inappropriate sources of information. In conclusion, most YouTube videos on paediatric cancer trials are not very informative and fall short of what could ethically be required regarding their facilitation of informed decision-making.

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  • 18.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Nygren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för radiologi, onkologi och strålningsvetenskap, Enheten för onkologi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
    Kihlbom, Ulrik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials2015Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, nr 1, s. 133-141Artikel i tidskrift (Refereegranskat)
    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.

  • 19.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Kihlbom, Ulrik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    "I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials2017Ingår i: Journal of Oncology Pharmacy Practice, ISSN 1078-1552, E-ISSN 1477-092X, Vol. 13, nr 10, s. 679-682Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Hope of a miracle cure is often an important motive for participating in phase 1 clinical cancer trials. Communication of hope may stimulate patients to participate and may enhance their quality of life; however, it may also deprive them of an opportunity to spend the remainder of their lives as they wish. Much depends on the kind of hope involved. This article outlines three forms of hope entertained by trial participants that, in various ways, are triggered, enhanced or modified by institutional norms within health care. This has normative as well as clinical implications; the information threshold for informed consent to enter phase 1 trials should be higher than that for consenting to medical treatment or entering randomised, controlled, phase 3 trials, clarifying the demarcation between clinical treatment and research. A simultaneous care model that integrates both trial participation and palliative care could and should also be offered; this is in line with the recommendations of the WHO, which state that palliative care should be applicable early in the course of illness. 

  • 20.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Kihlbom, Ulrik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom. Univ Bergen, Dept Global Publ Hlth & Primary Care, Bergen, Norway.
    Silen, Marit
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Nygren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials2016Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, nr 3, s. 516-523Artikel i tidskrift (Refereegranskat)
    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.

  • 21.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Nygren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för radiologi, onkologi och strålningsvetenskap, Enheten för onkologi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Hansson, Mats
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Kihlbom, Ulrik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, nr 11, s. 3137-3142Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    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. 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. 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. 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.

  • 22.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Petri, Suzanne
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Halkoaho, Arja
    Tampere University of Applied Sciences, Finland.
    Mangset, Margrete
    Oslo universitetssykehus, Oslo University Hospital, Norway.
    Pirinen, Merja
    University of Eastern Finland, Kuopio, Finland.
    Engelbak Nielsen, Zandra
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    When Nursing Care and Clinical Trials Coincide: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges2018Ingår i: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Vol. 13, nr 5, s. 475-485Artikel i tidskrift (Refereegranskat)
    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.

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  • 23.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Nord University, Norway..
    Vie, Knut Jørgen
    Centre for Technology, Innovation and Culture University of Oslo Oslo Norway.
    Bülow, William
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Holmberg, Bodil
    Department of Health and Caring Sciences Linnaeus University Växjö Sweden.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management and Ethics Karolinska Institutet Stockholm Sweden.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    How do journals publishing palliative and end‐of‐life care research report ethical approval and informed consent?2023Ingår i: Learned Publishing, ISSN 0953-1513, E-ISSN 1741-4857, Vol. 36, nr 4, s. 554-563Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This study explores how papers published in international journals in palliative and end-of-life care report ethical approval and informed consent. A literature search following PRISMA guidelines was conducted in PubMed, the Web of Science Core Collection, Scopus, the ProQuest Social Science Premium Collection, PsycINFO, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL). A total of169 empirical studies from 101 journals were deductively coded and analysed. The results showed that 5% of publications provided no information on ethical approval, 12% reported minimal information, 56% reported rudimentary information, and 27% reported comprehensive details. We also found that 13% did not report any information on informed consent, 17% reported minimal information, 50% reported rudimentary information, and 19% reported comprehensive details. The prevalence of missing and incomplete ethical statements and inadequate reporting of informed consent processes in recent publications raises concerns and highlights the need for improvement. We suggest that journals advocate high reporting standards and potentially reject papers that do not meet  ethical  requirements,  as  this is the quickest path to improvement.

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  • 24.
    Helgesson, Gert
    et al.
    Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management, and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Bülow, William
    Department of Philosophy, Stockholm University, Stockholm, Sweden.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Should the deceased be listed as authors?2019Ingår i: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 45, nr 5, s. 331-338Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Sometimes participants in research collaboration die before the paper is accepted for publication. The question we raise in this paper is how authorship should be handled in such situations. First, the outcome of a literature survey is presented. Taking this as our starting point, we then go on to discuss authorship of the dead in relation to the requirements of the Vancouver rules. We argue that in principle the deceased can meet the requirements laid down in these authorship guidelines. However, to include a deceased researcher as author requires a strong justification. The more the person has been involved in the research and writing process before he or she passes away, the stronger the justification for inclusion.

  • 25.
    Holmberg, Bodil
    et al.
    Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University,.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University.
    Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study2022Ingår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 21, artikel-id 134Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Among a growing population of older persons, many afected by multiple diseases and complexneeds, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses andfrail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this studywas to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situationsat the end of life in a nursing home.

    Methods: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in anurban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of feldwork,including participant observation and interviews. Observations and digitally recorded interviews were analysedthematically. Five public community stakeholders contributed to the analysis by discussing preliminary results andclinical implications in a focus group.

    Results: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodilycare, were identifed: Coping with the impact of workplace demands; Interacting in dialogue and communication;Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort.

    Conclusions: The fndings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriersincluded lack of resources, inefective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility forperforming their tasks in response to residents’ vulnerability. We therefore suggest that moral deliberation over issuesof communication, compassion, decision-making, and behavior, with particular consideration for the care relationship.To further improve the quality of care, organisations must provide resources for the building of relationships, as wellas time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation ofethically grounded palliative care

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  • 26.
    Holmberg, Bodil
    et al.
    Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University,.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University.
    Dignity in bodily care at the end of life in a nursing home: an ethnographic study2022Ingår i: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 22, artikel-id 593Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Nursing homes (NHs) are populated by the frailest older people who have multiple physical or mentalconditions and palliative care needs that may convey the violation of dignity. Although dignity is a commonly usedconcept and a core value of end-of-life care, it is assumed to be complex, ambiguous, and multivalent. Thus, the aimof this study was to explore aspects of dignity in older persons’ everyday lives in a NH.

    Design: A focused ethnographic study design.

    Methods: Data consisted of 170 h of feldwork, including observations (n=39) with residents (n=19) and assistant nurses (n=22) in a Swedish NH. Interviews were undertaken with residents several times (in total, n=35, mean70 min/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct thedeductive analysis.

    Results: The study showed that residents sufered from illness-related concerns that inhibited their possibilities tolive a dignifed life at the NH. Their failing bodies were the most signifcant threat to their dignity, as loss of abilitieswas constantly progressing. Together with a fear of becoming more dependent, this caused feelings of agony, loneliness, and meaninglessness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially,the residents’ dignity depended on assistant nurses’ routines and behaviour. Their dignity was violated by long waitingtimes, lack of integrity in care, deteriorating routines, and also by distanced and sometimes harsh encounters withassistant nurses. Because the residents cherished autonomy and self-determination, while still needing much help,these circumstances placed them in a vulnerable situation.

    Conclusions: According to residents’ narratives, important dignity-conserving abilities came from within themselves.Dignity-conserving interventions did occur, such as emphatic listening and bodily care, performed in respect for residents’ preferences. However, no strategies for future crises or preparing for death were observed. To protect residents’dignity, NHs must apply a palliative care approach to provide holistic care that comprises attention to personal, bodily,social, spiritual, and psychological needs to increase well-being and prevent sufering.

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  • 27.
    Lundin, Emma
    et al.
    Nacka Senior Centre Talliden, Helgesons väg 5, SE-131 37, Nacka, Sweden.
    Godskesen, Tove E.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Box 11189, SE-100 61, Stockholm, Sweden.
    End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes2021Ingår i: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, Vol. 20, nr 1, artikel-id 48Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life. Methods: The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with 13 nurses from 12 nursing homes in Sweden. The results were analysed using thematic content analysis. Results: The nurses described communicative, relational and organisational challenges. One major issue involved difficulties communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia. Conclusions: This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.

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  • 28.
    Norberg Wieslander, Kajsa
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Höglund, Anna T
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Frygner Holm, Sara
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Fysioterapi.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Research ethics committee members’ perspectives on paediatric research: a qualitative interview study2023Ingår i: Research Ethics, ISSN 1747-0161, E-ISSN 2047-6094, Research Ethics, Vol. 0, nr 0Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.

  • 29.
    Norbäck, Kajsa
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Höglund, Anna T
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Frygner Holm, Sara
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Fysioterapi.
    Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.2023Ingår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 24, nr 1, s. 23-, artikel-id 23Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.

    METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.

    RESULTS: The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.

    CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.

  • 30.
    Palmryd, Lena
    et al.
    Marie Cedershiöld högskola.
    Rejnö, Åsa
    Högskolan Väst.
    Alvariza, Anette
    Marie Cederschiöld högskola.
    Critical care nurses’ experiences ofethical challenges in end-of-life care2024Ingår i: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: In Swedish intensive care units, nine percent of patients do not survive despite receiving advanced life-sustaining treatments. As these patients transition to end-of-life care, ethical considerations may become paramount.Aim: To explore the ethical challenges that critical care nurses encounter when caring for patients at the end of life in an intensive care context.Research design: The study used a qualitative approach with an interpretive descriptive design.Research context and participants: Twenty critical care nurses from eight intensive care units in an urban region in Sweden were interviewed, predominately women with a median age of fifty-one years.Ethical considerations: This study was approved by The Swedish Ethics Review Authority.Findings: Critical care nurses described encountering ethical challenges when life-sustaining treatments persisted to patients with minimal survival prospects and when administering pain-relieving medications that could inadvertently hasten patients’ deaths. Challenges also arose when patients expressed a desire to withdraw life-sustaining treatments despite the possibility of recovery or when family members wanted to shield patients from information about a poor prognosis; these wishes occasionally conflicted with healthcare guidelines. The critical care nurses also encountered ethical challenges when caring for potential organ donors, highlighting the balance between organ preservation and maintaining patient dignity.Conclusion: Critical care nurses encountered ethical challenges when caring for patients at the end of life.They described issues ranging from life-sustaining treatments and administration of pain-relief, to patient preferences and organ donation considerations. Addressing these ethical challenges is essential for delivering compassionate, person-centered care and supporting family members during end-of-life care in an intensive care context.

  • 31.
    Palmryd, Lena
    et al.
    Perioperative Medicine and Intensive Care Function, Karolinska University Hospital, 171 76, Solna, Stockholm, Sweden;Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Box 11189, 100 61, Stockholm, Sweden.
    Rejnö, Åsa
    Department of Health Sciences, University West, 461 86, Trollhättan, Sweden;Department of Medicine, Skaraborg Hospital Skövde, 541 85, Skövde, Sweden.
    Godskesen, Tove E.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Box 11189, 100 61, Stockholm, Sweden.
    Integrity at the end of life in the intensive care unit: a qualitative study of nurses’ views2021Ingår i: Annals of Intensive Care, E-ISSN 2110-5820, Vol. 11, nr 1, artikel-id 23Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Integrity is a core value for delivering ethical health care. However, there is a lack of precision in definingwhat integrity is and how nurses understand it. In the setting of nurses caring for critically ill and dying patients inintensive care units (ICUs), integrity has not received much attention. Therefore, the aim of this study was to explorehow nurses perceive and maintain the integrity of patients during end-of-life care in the ICU setting.Methods: This study had a qualitative descriptive design. Data were collected using individual semi-structured interviewswith 16 intensive care nurses working at ICUs in four Swedish hospitals. The data were analysed by applyingqualitative content analysis.Results: Five overall categories were explored: seeing the unique individual; sensitive to patient vulnerability; observantof patients’ physical and mental sphere; perceptive of patients’ religion and culture; and being respectful duringpatient encounters. Many nurses found it difficult to define integrity and to explain what respecting integrity entails inthe daily care of dying patients. They often used notions associated with respect and patient-centred attitudes, suchas listening and being sensitive or by trying to describe good care. Integrity was nonetheless seen as a central valuefor their clinical work and a precondition for ethical nursing practice. Some nurses were concerned about patientintegrity, which is at risk of being “wiped out” due to the patient’s illness/injury, unfamiliarity with the ICU environmentand utter dependence on others for care. Protecting patients from harm and reducing patient vulnerability were alsoseen as important and a way to maintain the integrity of patients.Conclusions: The study results show that even though integrity is a fundamental ethical concept and a core value innursing, ethical codes and guidelines are not always helpful in clinical situations in the end-of-life care of ICU patients.Hence, opportunities must regularly be made available for ICU nurses to reflect on and discuss ethical issues in termsof their decision-making and behaviour.

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  • 32.
    Rejnö, Åsa
    et al.
    University West, Sweden;Skaraborg Hospital, Skövde, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal Bräcke University College, Sweden.
    Lennart, Nordenfelt
    Ersta Sköndal Bräcke University College, Sweden.
    Silfverberg, Gunilla
    Ersta Sköndal Bräcke University College, Sweden.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke University College, Sweden.
    Dignity at stake: Caring for persons with impaired autonomy2020Ingår i: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 27, nr 1, s. 104-115Artikel i tidskrift (Refereegranskat)
    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.

  • 33.
    Skogeland, Ulrika
    et al.
    Stockholm CF Center, Karolinska University Hospital, Stockholm, Sweden.
    de Monestrol, Isabelle
    Stockholm CF Center, Karolinska University Hospital, Stockholm, Sweden.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    WS18 Waiting for lung transplant, manifold experiences:: a literature review2018Ingår i: WS18 Waiting for lung transplant, manifold experiences:: a literature review, Journal of Cystic Fibrosis , 2018, Vol. 17, s. S33-Konferensbidrag (Refereegranskat)
  • 34.
    Skogeland, Ulrika
    et al.
    Stockholm CF Center Karolinska University Hospital, Stockholm, Sweden.
    de Monestrol, Isabelle
    Stockholm CF Center Karolinska University Hospital, Stockholm, Sweden.
    Godskesen, Tove E.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College Stockholm, Sweden,.
    Experiences of Individuals Awaiting Lung Transplantation2018Ingår i: Respiratory care, ISSN 0020-1324, E-ISSN 1943-3654, Vol. 63, nr 12, s. 1535-1540Artikel i tidskrift (Refereegranskat)
    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.

  • 35.
    Spörndly, Robert
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Godskesen, Tove E.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Representation of Ethnic Minorities in Swedish Clinical Cancer Trials: A Qualitative Study of Physicians' Experiences2018Ingår i: Harvard Public Health Review, Vol. 20, s. 1-10Artikel i tidskrift (Refereegranskat)
    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. 

  • 36.
    Steindal, Simen A.
    et al.
    Lovisenberg Diaconal Univ Coll, Lovisenberggt 15B, Oslo, Norway..
    Nes, Andrea Aparecida Goncalves
    Lovisenberg Diaconal Univ Coll, Lovisenberggt 15B, Oslo, Norway..
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Skondal Bracke Univ Coll, Palliat Res Ctr, Dept Hlth Care Sci, Stockholm, Sweden.
    Dihle, Alfhild
    Oslo Metropolitan Univ, Oslo, Norway..
    Lind, Susanne
    Ersta Skondal Bracke Univ Coll, Palliat Res Ctr, Dept Hlth Care Sci, Stockholm, Sweden..
    Winger, Anette
    Oslo Metropolitan Univ, Oslo, Norway..
    Klarare, Anna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård. Ersta Skondal Bracke Univ Coll, Palliat Res Ctr, Dept Hlth Care Sci, Stockholm, Sweden.
    Patients' Experiences of Telehealth in Palliative Home Care: Scoping Review2020Ingår i: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 22, nr 5, artikel-id e16218Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    Background: Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.

    Objective: The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.

    Methods: A scoping review was conducted using the methodological framework of Arksey and O'Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.

    Results: The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.

    Conclusions: The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.

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  • 37.
    Steindal, Simen A
    et al.
    Lovisenberg Diaconal University College, VID Specialized University, Norway..
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg Diaconal University College, Norway..
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, Stockholm, Sweden .
    Holmen, Heidi
    Oslo Metropolitan University, Oslo University Hospital, Norway..
    Winger, Anette
    Oslo Metropolitan University, Norway..
    Österlind, Jane
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum,.
    Dihle, Alfhild
    Oslo Metropolitan University, Norway..
    Klarare, Anna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Hälsovetenskap och e-hälsa. Marie Cederschiöld högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum,.
    Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: Systematic Mixed Studies Review2023Ingår i: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, artikel-id e43684Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth in home-based palliative care.

    Objective: In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients’ use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients.

    Methods: This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis.

    Results: This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth.

    Conclusions: The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.

  • 38.
    Steindal, Simen A
    et al.
    Lovisenberg Diaconal University College, Oslo, Norway.
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg Diaconal University College, Oslo, Norway.
    Godskesen, Tove
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal Bräcke University College.
    Lind, Susanne
    Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Dihle, Alfhild
    Oslo Metropolitan University, Oslo, Norway.
    Winger, Anette
    Oslo Metropolitan University, Oslo, Norway.
    Österlind, Jane
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC..
    Pettersen, Fredrik Solvang
    Lovisenberg Diaconal University College, Oslo, NOR..
    Holmen, Heidi
    Department of Nursing and Health Promotion, Faculty of Health Sciences, Oslo Metropolitan University, Oslo, NOR..
    Klarare, Anna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Hälsovetenskap och e-hälsa. Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC..
    Advantages and Challenges in Using Telehealth for Home-Based Palliative Care: Protocol for a Systematic Mixed Studies Review2021Ingår i: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 10, nr 5, artikel-id e22626Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Given the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth for home-based palliative care.

    OBJECTIVE: The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients' use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients.

    METHODS: This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data, and assess methodological quality. The data will then be analyzed using thematic synthesis.

    RESULTS: We describe the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021.

    CONCLUSIONS: Following the ethos of patient-centered palliative care, this systematic mixed studies review could lead to recommendations for practice and policy, enabling the development and implementation of telehealth applications and services that align with patients' preferences and needs at home.

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