Background: Informal caregivers (ICs), often family members or close friends, provide essential support to individuals with head and neck cancer. However, they are frequently unprepared for the emotional, practical, and medical challenges involved. Web-based applications offer promising opportunities to support ICs, but their long-term adoption and acceptance remain uncertain. Objective: This paper presents the development of Carer eSupport, a web-based application to support ICs' well-being and preparedness for caregiving. We detail the design and functionality of the Carer eSupport application and explain how it responds to both the functional and psychological needs of ICs. Additionally, we report findings from the pilot study and highlight the initial challenges ICs faced when engaging with the application, along with the strategies used to overcome them. Methods: The study involved a multicenter research trial across ear, nose, and throat clinics and oncology and radiotherapy clinics at 4 university hospitals in Sweden. The application was developed through 3 human-centered design (HCD) iterations involving ICs, health care professionals, and researchers in human-computer interaction and cancer care. Results: The results present an overview of the current version of Carer eSupport (developed during the third design iteration), with a focus on features that address the psychological needs of ICs, including competence, autonomy, and a sense of connection to others. The pilot study achieved a 66.7% (20/30) consent rate, a 75% (9/12) successful login rate among participants, and a 13.3% (4/30) attrition rate, meeting the established criteria. The pilot study confirmed the application's readiness for further evaluation in an ongoing randomized controlled trial. It also identified challenges, including the time constraints of ICs, login and authentication issues, limited IT infrastructure, and gaps in digital literacy. Conclusions: Findings from the HCD process and pilot study indicate that a personalized, interactive application like Carer eSupport can provide meaningful support for ICs of individuals with head and neck cancer. The integration of HCD and health care science offers early guidance for developing digital tools that are both evidence-based and empathetic, with potential relevance beyond caregiving contexts. Trial Registration: ClinicalTrials.gov NCT05028452, https://clinicaltrials.gov/study/NCT05028452 and NCT06307418, https://clinicaltrials.gov/study/NCT06307418 International Registered Report Identifier (IRRID): RR2-10.1186/s12885-024-12273-y

BACKGROUND:Informal 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 ANALYSIS:In 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.DISCUSSION:If 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 REGISTRATION:ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

Background In cancer care, do not resuscitate (DNR) orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. Previous studies have shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care. Methods A qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants. Results The participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work. Conclusion The study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and "natural" death with dignity for their dying patients. A preference for the expression "allow for natural death" instead of the traditional term "do not resuscitate" was found in the material.

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.

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.

Pettersson, M. 2018. COMPETENCE AND COMMUNICATION. Do Not Resuscitate Decisions in Cancer Care. Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1499. 62 pp. Uppsala: Acta Universitatis Upsaliensis. ISBN 978-91-513-0459-5. 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.

“Not the most difficult decision”. Physicians’ experience of Do-Not-Resuscitate (DNR) orders in hematology and oncology care.

Objective: In oncology and hematology care, a patient can have such a poor prognosis that cardiopulmonary resuscitation (CPR) for cardiac arrest is not considered feasible. The responsible physician can then decide to apply a do-not-resuscitate (DNR) order, meaning that neither basic (heart compressions and ventilation) nor advanced (defibrillator or medicines) CPR should be performed. Previous research has found disagreement in relation to DNR decisions among physicians and nurses working in this field. The aim of the present study was to explore the experiences and perceptions of physicians with respect to DNR orders within hematology and oncology care, in order to better understand their specific roles in this decision-making process, with focus on the ethical aspects of the decisions. Methods: Individual interviews were performed with 16 physicians working in hematology and oncology departments at seven hospitals in Sweden. Data were analyzed using systematic text condensation (STC). Results: Two main parts of the data were discerned. The first described the physicians’ different roles in the team in relation to decisions on DNR, as decision maker, patient advocate and mediator for relatives and team member. In the second part the physicians shared their experiences of making ethically challenging decisions on DNR. The experiences ranged from feeling as though they were making themselves God, to regarding a DNR order as one regular medical decision among others. The physicians made decisions on CPR or DNR with the patient's best interests in mind, primarily on medical grounds. However, they also considered ethical aspects of the decision, weighing beneficence versus maleficence. Conclusion: The results indicate that DNR decisions in oncology and hematology care are not only taken on medical grounds, such as the prognosis of the disease and the expected survival after CPR, but also with reference to ethical values, such as patient autonomy and the quality of life after resuscitation.

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.

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.