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  • 1.
    Johansson, Birgitta
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Cancer precision medicine.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.
    Ahmad, Awais
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division Vi3.
    Ohlsson-Nevo, Emma
    Fransson, Per
    Granström, Brith
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.
    Langegård, Ulrica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Cancer precision medicine.
    Pettersson, Mona
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Henriksson, Anna
    The School of Health, Care and Social Welfare, Mälardalen University, 721 23, Västerås, Box 883, Sweden.
    Tiblom Ehrsson, Ylva
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial2024In: BMC Cancer, E-ISSN 1471-2407, Vol. 24, no 1, article id 494Article in journal (Refereed)
    Abstract [en]

    BackgroundInformal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs’ well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs’ health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient’s health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients’ symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only.

    Methods and analysisIn this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance.

    DiscussionIf proven effective, Carer eSupport has the potential to significantly improve ICs’ preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing.

    Trial registrationClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

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  • 2.
    Pettersson, Mona
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    COMPETENCE AND COMMUNICATION: Do Not Resuscitate Decisions in Cancer Care2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Within cancer care, do not resuscitate (DNR) decisions are frequently made. DNR decisions can be ethically difficult and lead to conflicts of interest and disagreements within the medical team. This thesis brings together empirical knowledge of DNR decisions in cancer care and theoretical discussions on the ethical aspects and the competence needed to make such decisions.

    The overall aim of this project was to investigate the clinical and ethical aspects of DNR decisions from the perspectives of nurses and physicians working in hematology and oncology care. The methods used were qualitative, with individual interviews, and quantitative, using a web survey. Ethical theories, principles and models were used   in the planning of the studies and to explain and discuss the results.

    Fifteen nurses in Study I expressed a close relationship with their patients. They expressed how they needed clear and well-documented decisions on DNR to provide good care to patient and relatives. Sixteen physicians participated in Study II. They described how they made decisions on DNR mainly on medical grounds, but reflected on ethical aspects of the decision, weighing maleficence and beneficence.  In Study III, the interviews from Study I and II were analyzed from the perspective of ethical competence. The results showed that physicians and nurses were able to reflect on their ethical competence in relation to DNR decisions and described ethical competence as both being good and doing right. Also knowledge in ethics was emphasized.  In Study IV, 216 nurses and physicians participated. Most respondents thought it was important for patients and relatives to participate in, and be informed about, a DNR decision, but fewer thought that this was likely to happen. Nurses rated the importance higher than physicians did. The most important attributes in relation to DNR decisions for both nurses and physicians pertained more to medical viewpoints than to ethical values.

    DNR decisions in cancer care can be associated with ethical conflicts of interest, and nurses and physicians have different perspective of DNR decisions which they need to share. Competence in ethics and inter-professional communication are crucial for nurses and physicians participating in such decisions.

    List of papers
    1. Striving for good nursing care: Nurses' experiences of do not resuscitate orders within oncology and hematology care
    Open this publication in new window or tab >>Striving for good nursing care: Nurses' experiences of do not resuscitate orders within oncology and hematology care
    2014 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 21, no 8, p. 902-915Article in journal (Refereed) Published
    Abstract [en]

    Background: Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that they can receive a do not resuscitate order from the physician responsible, stipulating that neither basic nor advanced coronary pulmonary rescue be performed in the event of a cardiac arrest. Studies on do not resuscitate decisions within oncology and hematology units, focusing on the specific role of the nurse in relation to these decisions, are scarce.

    Objective: The aim of this study was to investigate hematology and oncology nurses’ experiences and perceptions of do not resuscitate orders, in order to achieve a deeper understanding of the nurses’ specific role in these decisions.

    Research design: A qualitative, descriptive methodology with individual semi-structured interviews was used.

    Participants and research context: A total of 15 nurses from eight hematology/oncology wards in four hospitals in Sweden were interviewed individually.

    Ethical considerations: In accordance with national regulations, an ethical review was not required for this study. The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration.

    Findings: The nurses strived for good nursing care through balancing harms and goods and observing integrity and quality of life as important values. Experienced hindrances for good care were unclear and poorly documented decisions, uninformed patients and relatives, and disagreements among the caregivers and family. The nurses expressed a need for an ongoing discussion on do not resuscitate decisions, including all concerned parties.

    Conclusion: In order to provide good nursing care, nurses need clear and well-documented do not resuscitate orders, and patients and relatives need to be well informed and included in the decisions. To increase the understanding for each other’s opinions within the medical team, regular ethical discussions are required.

    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-239297 (URN)10.1177/0969733014533238 (DOI)
    Available from: 2014-12-22 Created: 2014-12-22 Last updated: 2021-12-17
    2. “Not the most difficult decision”. Physicians’ experience of Do-Not-Resuscitate (DNR) orders in hematology and oncology care.
    Open this publication in new window or tab >>“Not the most difficult decision”. Physicians’ experience of Do-Not-Resuscitate (DNR) orders in hematology and oncology care.
    (English)Manuscript (preprint) (Other academic)
    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-361756 (URN)
    Available from: 2018-09-27 Created: 2018-09-27 Last updated: 2018-10-03
    3. Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care
    Open this publication in new window or tab >>Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care
    2018 (English)In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 63Article in journal (Refereed) Published
    Abstract [en]

    Background

    DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions.

    Methods

    Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis.

    Results

    Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing.

    Conclusions

    In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.

    Keywords
    Ethical competence; DNR decisions; Oncology; Hematology; Nurses; Physicians
    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-355087 (URN)10.1186/s12910-018-0300-7 (DOI)000435613900002 ()29914440 (PubMedID)
    Funder
    Swedish Cancer Society
    Available from: 2018-06-26 Created: 2018-06-26 Last updated: 2021-12-17Bibliographically approved
    4. Perspectives on the DNR decisions process: a survey of nurses and physicians in hematology and oncology
    Open this publication in new window or tab >>Perspectives on the DNR decisions process: a survey of nurses and physicians in hematology and oncology
    2018 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 13, no 11, article id e0206550Article in journal (Refereed) Published
    Abstract [en]

    Introduction

    In cancer care, do-not-resuscitate (DNR) decisions are made frequently; i.e., decisions not to start the heart in the event of a cardiac arrest. A DNR decision can be a complex process involving nurses and physicians with a wide variety of experiences and perspectives. Previous studies have shown different perceptions of the DNR decision process among nurses and physicians, e.g. concerning patient involvement and information. DNR decisions have also been reported to be unclear and documentation inconsistent.

    Objective

    The aim was to investigate how important and how likely to happen nurses and physicians considered various aspects of the DNR decision process, regarding participation, information and documentation, as well as which attributes they found most important in relation to DNR decisions.

    Methods

    A descriptive correlational study using a web survey was conducted, including 132 nurses and 84 physicians working in hematology and oncology.

    Results

    Almost half of the respondents reported it not likely that the patient would be involved in the decision on DNR, and 21% found it unimportant to inform patients of the DNR decision. Further, 57% reported that providing information to the patient was important, but only 21% stated that this was likely to happen. There were differences between nurses and physicians, especially regarding participation by and information to patients and relatives. The attributes deemed most important for both nurses and physicians pertained more to medical viewpoints than to ethical values, but a difference was found, as nurses chose patient autonomy as the most important value, while physicians rated non-maleficence as the most important value in relation to DNR decisions.

    Conclusion

    Nurses and physicians need to be able to talk openly about their different perspectives on DNR decisions, so that they can develop a deeper understanding of the decisions, especially in cases where they disagree. They should also be aware that what they think is important is not always likely to happen. The organization needs to support such discussions through providing an environment that allows ethical discussions on regular basis. Patients and relatives will also benefit from receiving the same information from all caregivers.

    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-361787 (URN)10.1371/journal.pone.0206550 (DOI)000451054800020 ()30462673 (PubMedID)
    Note

    Contributed equally to this work: Mona Pettersson, Anna T. Höglund, Mariann Hedström

    Available from: 2018-09-27 Created: 2018-09-27 Last updated: 2021-12-17Bibliographically approved
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  • 3.
    Pettersson, Mona
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care2018In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 63Article in journal (Refereed)
    Abstract [en]

    Background

    DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions.

    Methods

    Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis.

    Results

    Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing.

    Conclusions

    In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.

    Download full text (pdf)
    fulltext
  • 4.
    Pettersson, Mona
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Striving for good nursing care: Nurses' experiences of do not resuscitate orders within oncology and hematology care2014In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 21, no 8, p. 902-915Article in journal (Refereed)
    Abstract [en]

    Background: Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that they can receive a do not resuscitate order from the physician responsible, stipulating that neither basic nor advanced coronary pulmonary rescue be performed in the event of a cardiac arrest. Studies on do not resuscitate decisions within oncology and hematology units, focusing on the specific role of the nurse in relation to these decisions, are scarce.

    Objective: The aim of this study was to investigate hematology and oncology nurses’ experiences and perceptions of do not resuscitate orders, in order to achieve a deeper understanding of the nurses’ specific role in these decisions.

    Research design: A qualitative, descriptive methodology with individual semi-structured interviews was used.

    Participants and research context: A total of 15 nurses from eight hematology/oncology wards in four hospitals in Sweden were interviewed individually.

    Ethical considerations: In accordance with national regulations, an ethical review was not required for this study. The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration.

    Findings: The nurses strived for good nursing care through balancing harms and goods and observing integrity and quality of life as important values. Experienced hindrances for good care were unclear and poorly documented decisions, uninformed patients and relatives, and disagreements among the caregivers and family. The nurses expressed a need for an ongoing discussion on do not resuscitate decisions, including all concerned parties.

    Conclusion: In order to provide good nursing care, nurses need clear and well-documented do not resuscitate orders, and patients and relatives need to be well informed and included in the decisions. To increase the understanding for each other’s opinions within the medical team, regular ethical discussions are required.

  • 5.
    Pettersson, Mona
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    The ethics of DNR-decisions in oncology and hematology care: A qualitative study2020In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 21, no 1Article in journal (Refereed)
    Download full text (pdf)
    fulltext
  • 6.
    Pettersson, Mona
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Perspectives on the DNR decisions process: a survey of nurses and physicians in hematology and oncology2018In: PLOS ONE, E-ISSN 1932-6203, Vol. 13, no 11, article id e0206550Article in journal (Refereed)
    Abstract [en]

    Introduction

    In cancer care, do-not-resuscitate (DNR) decisions are made frequently; i.e., decisions not to start the heart in the event of a cardiac arrest. A DNR decision can be a complex process involving nurses and physicians with a wide variety of experiences and perspectives. Previous studies have shown different perceptions of the DNR decision process among nurses and physicians, e.g. concerning patient involvement and information. DNR decisions have also been reported to be unclear and documentation inconsistent.

    Objective

    The aim was to investigate how important and how likely to happen nurses and physicians considered various aspects of the DNR decision process, regarding participation, information and documentation, as well as which attributes they found most important in relation to DNR decisions.

    Methods

    A descriptive correlational study using a web survey was conducted, including 132 nurses and 84 physicians working in hematology and oncology.

    Results

    Almost half of the respondents reported it not likely that the patient would be involved in the decision on DNR, and 21% found it unimportant to inform patients of the DNR decision. Further, 57% reported that providing information to the patient was important, but only 21% stated that this was likely to happen. There were differences between nurses and physicians, especially regarding participation by and information to patients and relatives. The attributes deemed most important for both nurses and physicians pertained more to medical viewpoints than to ethical values, but a difference was found, as nurses chose patient autonomy as the most important value, while physicians rated non-maleficence as the most important value in relation to DNR decisions.

    Conclusion

    Nurses and physicians need to be able to talk openly about their different perspectives on DNR decisions, so that they can develop a deeper understanding of the decisions, especially in cases where they disagree. They should also be aware that what they think is important is not always likely to happen. The organization needs to support such discussions through providing an environment that allows ethical discussions on regular basis. Patients and relatives will also benefit from receiving the same information from all caregivers.

    Download full text (pdf)
    Perspectives on the DNR decision process:
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