The Ethics Blog

A research blog from the Centre for Resarch Ethics & Bioethics (CRB)

Tag: qualitative research (Page 1 of 2)

Losing a family member in an intensive care unit

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14 April, 2026 / / 1 Comment

An intensive care unit is a place where life is maintained with the help of advanced medical equipment. But it is also a place where life sometimes ends. In cases where it becomes clear that life-sustaining care is no longer meaningful, but should be changed into end-of-life care, the healthcare staff has a particularly great responsibility to support the patient’s family and make the situation understandable to them.

The physical environment of an intensive care unit can feel cold and alien. The emotional contact with the intensive care nurses therefore becomes all the more important for the family members’ experiences and ability to cope with the situation – both in the unit and afterwards. In a recently published study, 22 family members were interviewed about their experiences of losing a loved one in an intensive care unit in Sweden.

The interviews revealed that family members needed more than just information. Arrival at the unit was characterized by fear, uncertainty and confusion. What they found particularly important was that the healthcare staff understood their emotional state and showed their understanding through compassionate ways of meeting and talking to them. The fact that the staff put chairs around the bed and explained the visit to the patient created a sense of shared humanity.

Although several of the interviewees appreciated that the staff tried to inform them about the patient’s condition, they had difficulty understanding the meaning of what was said. The medical information did not meet their emotional needs. Sometimes the information could not be absorbed at all, or they got fixated on some medical detail in the information. The most difficult thing to understand was, of course, that the relative was now very close to death and might not even survive the night. While some had difficulty giving up hope, others could perceive any attempts to give hope as clearly empty. What the family members mainly emphasized as important was how the nurses’ compassion and emotional support helped them understand the reality of the loss. Understanding life and death cannot be equated with being informed.

One thing that particularly worried family members was whether the loved one suffered in their final moments of life. Even though they knew that the nurses had given pain relief and sedatives, they were concerned (both before and after the patient’s death) whether the doses had been high enough to completely relieve pain, fear and anxiety. Some had also (perhaps much earlier) promised their loved ones to ensure that their death would be peaceful, which could reinforce fear and give rise to feelings of guilt. Others, who felt that the staff had done everything that could be done for the patient, could still worry about invisible forms of anxiety that the sedatives did not fully relieve. Or worry that the medication itself could cause nightmares. Addressing family members’ concerns about their loved one’s suffering requires more than just information: emotionally clear communication rooted in understanding their concerns.

Finally, the interviews highlighted the importance of being able to say goodbye to the loved one, whether it took place before, after, or at the moment of death. Again, the healthcare staff played an important role in enabling a farewell that the relatives felt was in line with their relationship. Regardless of whether the farewell is improvised or ritual, a meaningful farewell can have long-term significance for the grieving process.

Read the article here: Losing a close person to death in ICU: A thematic analysis of bereaved family members’ experiences of end-of-life care.

The authors emphasize four things to consider in particular to further improve a family-centered approach in an intensive care unit. First, family members need to feel seen and heard in a situation of emotional chaos. Second, they need to understand the implications of withdrawing treatment. Third, they need to trust that their loved one is not suffering, or did not need to suffer. Finally, family members need the opportunity for a meaningful farewell.

All of this requires that intensive care nurses can prioritize support for family members.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Lena Palmryd, Anette Alvariza, Åsa Rejnö, Tove Godskesen, Losing a close person to death in ICU: A thematic analysis of bereaved family members’ experiences of end-of-life care, Intensive and Critical Care Nursing, Vol. 94, 2026, https://doi.org/10.1016/j.iccn.2026.104359

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When youth participation becomes symbolic: voices and influence in global health governance

world map
7 April, 2026 / / 1 Comment

Global health discussions have, in recent years, made a point of involving young people. Conferences feature youth panels, international organisations hold youth consultations, and most major health strategies now list youth engagement as a priority. All in all, it seems only fair, given that the challenges being debated today (for instance, pandemic preparedness and management, antimicrobial resistance, and climate change) will shape the lives of younger generations for decades. Yes, they should have some say in how those problems are addressed. But what kind of say, exactly?

Being invited to a conference is not the same as influencing what gets discussed or decided there. Young participants can be present at consultations and advisory boards, while the structures where policy is actually made remain largely unchanged. Youth involvement signals openness without necessarily altering how priorities are set or resources distributed. Participation, in other words, can be real without being meaningful.

This difference between symbolic and meaningful participation matters most in fields with long time horizons. Antimicrobial resistance (AMR) is a good example. Because its consequences will unfold over decades, younger generations are routinely described as key stakeholders in the global response. International efforts to address AMR, including the Quadripartite collaboration between WHO, FAO, UNEP and WOAH, increasingly emphasise the importance of engaging a broad range of societal actors, including young people. A 2025 commentary in Nature Communications described young people as potential “change-makers” in AMR efforts, and a study in PLOS Global Public Health the same year argued that youth, particularly in regions heavily affected by infectious diseases, remain underrepresented in decision-making despite their potential contributions. These discussions reflect a broader body of literature that is emerging and examines how youth participation is incorporated into global health governance.

And yet, as a study I recently co-authored shows, being named a stakeholder and being given real influence are quite different things. In our study, Beyond symbolic participation: youth-led organisations’ voices and actions against antimicrobial resistance in Africa south of the Sahara, conducted in collaboration with the Roll Back Antimicrobial Resistance (RBA) Initiative, we examined how youth organisations across sub-Saharan Africa engage with AMR through awareness campaigns, community education, and advocacy. We found that these organisations are far from passive. Many are doing creative, committed work under significant resource constraints – yet the very organisations expected to mobilise communities against antimicrobial resistance often lack stable funding, institutional recognition, or access to the policy spaces where decisions are made.

A pattern emerges. Youth organisations are frequently invited to meetings and international events related to AMR, but this involvement rarely translates into meaningful influence over decisions. Participation often serves as a signal of inclusiveness rather than a mechanism for change. The term for this is tokenism: when representation serves mainly to legitimise a process rather than to reshape it. This is not just a practical problem; it is an ethical one. If younger generations are expected to live with the long-term consequences of today’s health policies, participation that remains purely symbolic is difficult to justify.

That said, influence is not only exercised through formal seats at decision-making tables. Youth-led organisations often operate entirely outside traditional governance structures, shaping debates through grassroots mobilisation and public engagement in ways that institutional frameworks often fail to capture. These contributions matter, even when they are harder to measure.

The question facing global health governance today is not really whether young people should be involved (that case has already been made). It is how their involvement should be structured so that it amounts to something. In a field like antimicrobial resistance, where the decisions being made now will have consequences for generations, ensuring that participation is meaningful rather than symbolic is a matter of intergenerational justice.

Mirko Ancillotti is associate professor of bioethics at the Centre for Research Ethics & Bioethics.

Samwel, E. V., Biasiotto, R., Mosha, M., & Ancillotti, M. (2025). Beyond symbolic participation: youth-led organisations’ voices and actions against antimicrobial resistance in Africa South of the Sahara. Global Health Action, 18(1). https://doi.org/10.1080/16549716.2025.2601409

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Approaching future issues

Public perceptions of risk information about colorectal cancer

toilet
24 March, 2026 / / 1 Comment

The fourth most common form of cancer in Sweden is colorectal cancer. The disease can be linked to both heredity and environmental factors, and to individual lifestyle factors such as tobacco smoking, obesity, alcohol consumption, physical inactivity and eating habits (high intake of red and processed meat; low intake of fruit, vegetables, fibers and calcium). The link to lifestyle means that individuals can reduce their risk of colorectal cancer by changing their habits.

This opportunity to influence one’s own risk naturally requires that one is aware of the disease and informed about the lifestyle-related factors. But what does the public know about colorectal cancer? How do they prefer that risk information about lifestyle-related factors be communicated? And what can motivate them to change their habits? Well-designed risk communication requires knowledge of these issues.

An interview study investigated the general public’s knowledge of colorectal cancer and views on risk communication about the disease. They also examined what the participants thought would motivate them to change their lifestyle. The lead author is Erica Sundell, who, together with four co-authors, describes the study’s design and results in an article in BMC Public Health. They found that the participants generally knew very little about colorectal cancer and that most had never encountered information about specific risk factors. The knowledge gap was instead filled by stereotypes about who is at risk of developing colorectal cancer, and by guesses about how healthy habits can outweigh less healthy ones. Such intuitions can lead to incorrect assessments of one’s own risk and how it is best managed. Colorectal cancer therefore needs to be made more visible, but how?

Something that emerged from the interviews was that specific risk factors for colorectal cancer did not necessarily motivate the participants to change their habits. The risk of colorectal cancer was only one of several factors that they balanced, and they were prepared to take certain risks in order to live a good life here and now. It also turned out that although some believed that a reduced risk of colorectal cancer could motivate them to change their habits, others said that what could motivate them to live healthier was a reduced risk of cardiovascular disease, better health in general, and greater well-being.

Another interview result was that the participants wanted information that explained how lifestyle-related factors can increase the risk of colorectal cancer. Several found it strange that smoking can affect the risk of cancer in the colon and rectum and not just in the lungs. Other risk factors also seemed intuitively unlikely. The interviewees therefore wanted information that not only listed risk factors but also provided a deeper understanding of the mechanisms, at least when the risk factors were spontaneously perceived as unlikely. At the same time, the messages need to be simple and not overloaded with information. Furthermore, the participants believed that positive information that emphasizes what you gain from changing your habits is more effective than negative information that spreads fear and guilt by focusing primarily on risks associated with your lifestyle.

The study yielded many interesting results, for example about where and when people are most receptive to risk information, and how responsibility can be shared between the individual and society. You can find the article here: Colorectal cancer risk: stereotypical assumptions and competing values ​​– a qualitative study with the general public.

In their conclusion, the authors emphasize that colorectal cancer needs to be made visible in order to counteract preconceived notions about the disease. There is a clear need to make it understandable how certain lifestyle habits can affect the risk of colorectal cancer, as the connections can sometimes seem unlikely. It should also be borne in mind that people may have different motives for living healthier, and that they may make different trade-offs between quality of life and reduced risk. Finally, the authors emphasize that risk communication about colorectal cancer should be nuanced and non-judgmental, especially considering that the recommendations do not guarantee protection against cancer.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Sundell, E., Hedström, M., Fahlquist, J.N. et al. Colorectal cancer risk: stereotypical assumptions and competing values – a qualitative study with the general public. BMC Public Health 26, 706 (2026). https://doi.org/10.1186/s12889-026-26737-2

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We care about communication

How is ethical review perceived by researchers in the social sciences and humanities?

3 March, 2026 / / 1 Comment

Research involving humans requires ethical review. Ethical review is important to protect the rights and interests of research participants, and to maintain public trust in research. Ethical review was originally developed for biomedical research where it is common to recruit patients as test subjects, for example in clinical drug trials. In Sweden, a central authority is responsible for ethical review, the Ethical Review Authority. In order to conduct research involving humans and sensitive personal data, researchers must first apply for permission from the authority. Researchers who violate the Act on Ethical Review of Research involving Humans can be prosecuted and sentenced to a fine or imprisonment.

Social sciences and humanities are also covered by the Act on Ethical Review. However, it has been questioned whether the requirement for ethical review is relevant for these academic disciplines where humans are not normally recruited as test subjects. However, even here, empirical research involving humans occurs, and the methods used can affect and harm the people in the studies. Furthermore, sensitive personal data is often used in the research. If such aspects justify ethical review of biomedical research, they should also justify ethical review of research in the social sciences and humanities.

At the same time, it should be remembered that research is conducted differently in different scientific fields. For example, research in the social sciences and humanities is usually conducted in a more exploratory and inductive manner than in biomedicine. Aims, questions and methods can be modified during the course of the research work, as data is collected and analyzed. It can therefore be difficult for researchers in these disciplines to provide sufficiently specific information about aims, questions and methods in their ethics review applications. Furthermore, in the social sciences and humanities, researchers often work with publicly available personal data: they may have appeared in newspapers. Do researchers have to apply for ethical permission to conduct research on sensitive personal data that anyone can access, such as opinions expressed in debates in the media?

The requirement for ethical review in the social sciences and humanities has been debated and questioned by representatives of these disciplines. It is therefore valuable to empirically examine researchers’ perceptions of ethical review. Do the critical opinions in the debate have broader support among researchers? Together with three co-authors, William Bülow reports on an interview study with 18 Swedish researchers in business, language, history, political science, sociology, gender studies, religious studies and other disciplines within the academic domain. The article is published in the Journal of Academic Ethics. Questions that were sought to be answered were how researchers believe the ethical review system works within their academic disciplines, what advantages and disadvantages researchers experience with the system, and how they believe it can be adapted for research in the social sciences and humanities.

The interviews revealed a broad spectrum of experiences and perceptions. Some considered it an advantage that research projects are ethically reviewed by an external authority that has the necessary expertise, infrastructure and independence. Others saw it as a disadvantage that researchers, faculties and universities were deprived of their personal and collegial ethical responsibility. Does one not take deeper ethical responsibility by continuously discussing one’s research with colleagues, for example at the research seminar? Many of those interviewed described the difficulties that researchers in the social sciences and humanities may experience when they have to specify the research in advance in the application form, since aims, questions and methods can be modified during the work. Some described how they had to find a balance between providing the specific information required in an ethics review application and leaving room for the changes in the design that the research itself may require.

A recurring theme in the interviews was that the application form was too focused on biomedical research with human test subjects. Many of the questions in the form were perceived as irrelevant and almost unanswerable. For example, forms were requested that were better adapted for document studies. Many also experienced a lack of guidance and support from the Ethical Review Authority when filling in the form. Others, however, considered that such criticism of the form and the support from the authority was exaggerated.

The system of ethical review also gave rise to emotions. For example, fear of making mistakes in the ethics application that lead to losing important research time, or concerns about whether researchers are allowed to use publicly available personal data without applying for ethical permission. Some stated that colleagues could opt out of empirical research to avoid these uncertainties that the system could create. Some considered it unreasonable that they, as researchers, could be sentenced to fines or imprisonment for not following the Act on Ethical Review. An important theme in the interviews was that the system of ethical review can influence researchers’ choice of questions, materials and methods in order to avoid perceived uncertainties about ethical review.

In their discussion, the authors argue that the interview results speak against some of the objections that representatives of the social sciences and humanities have directed at the Swedish system of ethical review. For example, it has been argued that regulation can lead to de-professionalization, where researchers no longer take ongoing responsibility for ethical problems that arise in their research work. Although such concerns were expressed in the interviews, others emphasized that, on the contrary, there were very lively discussions about research ethics at their institutions and that the legal requirement for ethical review has increased awareness of research-ethical issues.

A particularly problematic interview result, according to the authors, is that fear and uncertainty about the requirement for ethical review, reinforced by the risk of legal action such as fines and imprisonment, can influence researchers’ choice of questions and methods. There is a risk that questions that one is genuinely curious about are investigated to a lesser extent, or with less empirical depth, in order to avoid the requirement for ethical review. In short, important research risks not being carried out if researchers choose more theoretical approaches or limit their material and questions to avoid perceived uncertainties about ethical review.

Overall, the interview results do not speak against the Swedish ethical review system, according to the authors. However, the results indicate that certain aspects of the system may need to be improved and adapted to the social sciences and humanities. The Ethical Review Authority probably needs to make the application process and form more flexible to suit different scientific fields. The authority probably also needs to consider better support for researchers who are unsure about the application process or the ethical requirements that apply to research in the social sciences and humanities.

For more results and the authors’ discussion, read the article here: Experiences of Ethical Review: Perspectives of Swedish Researchers in Social Science and Humanities.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Bülow, W., Johansson, M., Persson, V. et al. Experiences of Ethical Review: Perspectives of Swedish Researchers in Social Science and Humanities. Journal of Academic Ethics 24, 35 (2026). https://doi.org/10.1007/s10805-025-09702-3

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Management control through guidelines creates complex challenges for general practitioners

Stethoscope
10 February, 2026 / / 3 Comments

A vital tool for ensuring and improving quality in healthcare is clinical guidelines. Guidelines are used to support the clinicians’ memory and evidence-based decision-making, as well as to guide the choice of investigations and treatments toward the most cost-efficient alternatives. Increased control over healthcare costs is also given higher priority as a larger proportion of public health spending is directed toward private actors operating within publicly funded care. To ensure proper outcome monitoring, strong emphasis is placed on measurable indicators, which are defined by clinical guidelines.

Together with medical advances, the ambition to improve quality through prioritizing measurable results has increased both the number and complexity of clinical guidelines guiding the work of healthcare professionals. Guidelines have evolved from being simple decision-support tools for individual patient situations to being designed more often as comprehensive care processes for different medical conditions, encompassing multiple healthcare professionals, various healthcare settings, and extended periods of time. An illustrative example is the standardized care processes being developed within the Swedish system for knowledge-based management, led by the Swedish Association of Local Authorities and Regions.

The development towards increased management control and a stronger focus on measurable outcomes in public organizations has caused considerable debate, where both the advantages and disadvantages of micromanagement have been widely discussed. The focus of the media debate has, among other things, revolved around the organizational and governance model New Public Management (NPM) and its consequences for employees in the public sector.

However, management control through guidelines affects different professions in different ways and also varies across countries. Thus, there is insufficient empirical research examining the concrete consequences that management control through guidelines has for physicians in Swedish primary care and for their work. Therefore, in the article General practitioners and management control through guidelines: a qualitative study of its effects on their practice, which my co-authors and I have recently had published, we examine the consequences for Swedish general practitioners (GPs).

We interviewed 11 GPs across Sweden about how they concretely experience that management control through guidelines affects their work and what consequences they perceive it has for healthcare. We found that management control through guidelines creates complex challenges for GPs, challenges that could be divided into three distinct fields of tension.

In the first field of tension, there is a tension between the high ambitions that underlie management control through guidelines, and the negative side-effects that these ambitions cause. All GPs expressed a deep-rooted sympathy for the ambitions of using guidelines to ensure quality, improve efficiency, and increase equality among patients. Guidelines were seen as an indispensable support in the complex clinical everyday practice for achieving these objectives. At the same time, the guidelines lead to an increased overall workload, as new guidelines more often add tasks than remove existing ones, including more extensive investigations and treatments for various conditions. The increased workload negatively affects physicians’ ability to make well-considered medical decisions and worsens their working environment. The downside of overly extensive investigations is also that healthy patients undergo medical examinations unnecessarily, healthcare costs increase, and patients who are truly ill have to wait longer for investigation and care. Another aspect that emerged was that guidelines in the form of care agreements that define the responsibilities of each healthcare setting were considered to reduce flexibility and impair collaboration between doctors.

The second field of tension is the tension between the measurable knowledge that guidelines most often emphasize and the unmeasurable knowledge that is considerably more difficult to capture in guidelines. Examples of unmeasurable knowledge that GPs use daily in their encounters with patients include clinical intuition and, by using a holistic perspective, taking the patient’s entire life situation into account in the assessment. Other examples include supporting behavioral changes and fostering patient acceptance to improve their quality of life. Unmeasurable practical knowledge is also needed to manage complex situations where knowledge from guidelines is difficult to apply, such as patients with diffuse symptoms or patients with multimorbidity. An excessive focus on measurable knowledge risks displacing unmeasurable knowledge and hindering its development.

The third field of tension is the tension between the high value that GPs place on their own professional autonomy in relation to the guidelines, and factors encouraging them to relinquish this autonomy even if in the specific situation it may not be in the patient’s best interest. Such factors include the perception that following guidelines is a duty, as well as the expectation that adherence will result in less demanding work and a reduced personal responsibility. The interviews provided examples of how uncritical adherence to guidelines can worsen patient care. At the same time, an important purpose of clinical guidelines is to protect patients from incompetent physicians and bad practice, which was also emphasized in the interviews and highlights the complexity of this field of tension.

In summary, management control through guidelines creates various fields of tension that pose challenges in the daily work of GPs. Since the trend toward more numerous and complex guidelines is natural in a healthcare system that focuses strongly on measurable outcomes, it is important for healthcare decision-makers and guideline developers to acknowledge its potential side effects and to address its ethical dimensions. The normative question of the extent to which GPs should be allowed to exercise their professional autonomy in relation to guidelines is also important to consider.

Written by…

Jens Lundegård, PhD student at the Centre for Research Ethics & Bioethics and specialist in family medicine.

Lundegård, J., Grauman, Å., Juth, N. et al. General practitioners and management control through guidelines: a qualitative study of its effects on their practice. BMC Primary Care (2026). https://doi.org/10.1186/s12875-025-03171-8

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Need for evidence on nursing in childhood cancer care?

20 January, 2026 / / 1 Comment

Caring for children with cancer involves more than just medical cancer treatment. Nurses are responsible for a wide range of nursing tasks. They discuss the disease and treatment with children and parents, monitor children’s nutritional needs, give pain treatment, insert catheters, care for wounds and much more.

These nursing tasks are associated with varying degrees of uncertainty about how they are best performed and there may therefore be a need for more evidence. In a recent study, health care professionals at six childhood cancer centers in Sweden were asked about knowledge gaps that they perceived created uncertainty in their work. What questions does future nursing research need to investigate more closely?

The study identified approximately fifteen aspects of nursing that the staff considered required research efforts. They expressed uncertainty about aspects such as how best to talk to adolescents about fertility and sexuality, the benefits and disadvantages of tube feeding, how best to support children’s and families’ participation in care, or how pain assessment methods can be integrated more efficiently to ensure good pain relief. They also expressed uncertainty about children’s and adolescents’ body image and how it is affected by treatment effects on appearance, and uncertainty about the best diet in connection with cancer treatment.

Identifying areas where more research is needed is important. However, in the discussion of the results, the authors emphasize that evidence for many of the areas identified already exists. Of course, even more evidence may be needed. But it may also be that the research has not been effectively disseminated to nursing practice. The authors therefore emphasize the need to actually implement evidence in the form of guidelines and treatment protocols. They also emphasize that one way to increase awareness of existing evidence is to increase nurses’ involvement in research.

Read the article here: Research gaps in nursing status and interventions – A deductive qualitative analysis of healthcare professionals’ perspectives from Swedish childhood cancer care.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Cecilia Bartholdson, Anna Pilström, Pernilla Pergert, Johanna Granhagen Jungner, Maria Olsson, “Research gaps in nursing status and interventions – A deductive qualitative analysis of healthcare professionals’ perspectives from Swedish childhood cancer care,” European Journal of Oncology Nursing, Volume 78, 2025, https://doi.org/10.1016/j.ejon.2025.102972

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Paediatric nurses’ experiences of not being able to provide the best possible care

Stuffed bunny nurse
14 October, 2025 / / 1 Comment

Inadequate staffing, competing tasks and unexpected events can sometimes make it difficult to provide patients with the best possible care. This can be particularly stressful when caring for children with severe diseases. For a nurse, experiencing situations where you cannot provide children with cancer with the best possible care (which means more than just the best possible medical treatment) is an important cause of stress.

To provide a basis for better support for paediatric nurses, a research group interviewed 25 nurses at three Swedish paediatric oncology units. The aim of the interview study was to understand what the nurses experienced as particularly important in situations where they felt they had not been able to provide the best possible care, and how they handled the challenges.

The most important concern for the nurses was to uphold the children’s best interests. One thing that could make this difficult was lack of time, but also disagreements about the child’s best interests could interfere with how the nurses wanted to care for the children. The researchers analyze the paediatric nurses’ handling of challenging situations as a juggling of compassion and competing demands. How do you handle a situation where someone is crying and needs comfort, while a chemotherapy machine somewhere in the ward is beeping and no colleagues are available? What do you do when the most urgent thing is not perceived as the most important?

In the analysis of how the nurses juggled compassion and competing demands, the researchers identified five strategies. One strategy was to prioritize: for example, forego less urgent tasks, such as providing emotional support. Another strategy was to shift up a gear: multitasking, working faster, skipping lunch. A third strategy was to settle for good enough: when you can’t provide the best possible care, you strive to at least provide good enough care. A fourth strategy was acquiescing in situations with different perceptions of the patient’s best interests: for example, continuing to treat a patient because the physician has decided so, even though one believes that prolonged treatment is futile. Regarding this strategy, the nurses requested better dialogue with physicians about difficult patient cases, in order to understand the decisions and prevent acquiescing. The fifth and final strategy was pulling together: to support each other and work as a team with a common goal. Often, there was no need to ask for support; colleagues could spontaneously show solidarity by, for example, staying after their work shifts to help.

In their conclusion, the authors write that adequate staffing, collegial support and good interprofessional communication can help nurses deal with challenges in the care of children with cancer. Read the article here: Juggling Compassion and Competing Demands: A Grounded Theory Study of Pediatric Nurses’ Experiences.

While reading, it may be worth keeping in mind that the study focuses only on situations where it was felt that the best possible care could not be given. The authors point out that the interviews overflowed with descriptions of excellent care and good communication, as well as how rewarding and joyful the work of a paediatric nurse can be.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Ventovaara P, Af Sandeberg M, Blomgren K, Pergert P. Juggling Compassion and Competing Demands: A Grounded Theory Study of Pediatric Nurses’ Experiences. Journal of Pediatric Hematology/Oncology Nursing. 2025;42(3):76-84. doi:10.1177/27527530251342164

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Ethics needs empirical input

Overweight increases the risk of cancer – but what good does the information do?

Scale & measuring tape. Photo by Pixabay: https://www.pexels.com/photo/blue-tape-measuring-on-clear-glass-square-weighing-scale-53404/
27 May, 2025 / / 1 Comment

Authorities and researchers have a responsibility to the public to disseminate information about risks identified through research. Dissemination of information and education are also an important part of public health efforts to influence norms about lifestyle habits and support individuals in making informed choices about their health.

Research has found links between overweight and at least 13 different types of cancer, including colorectal cancer and postmenopausal breast cancer. Preventing and treating obesity could therefore lead to fewer cancer cases in the future. The European Code Against Cancer presents 12 actions individuals can take to reduce their cancer risk. These include lifestyle changes, protection from certain chemicals, participation in vaccination and screening programs, and maintaining a healthy weight.

This type of information suggests that preventive measures can be controlled and influenced by the individual. It is the individual who is expected to act. However, perceptions that individuals have control over the causes of cancer can lead to stigmatization and blaming of cancer patients, as well as the belief that the disease is self-inflicted. Such harmful effects of health information have been observed in previous campaigns aimed at raising public awareness of the link between smoking and lung cancer. Overweight and obesity are already stigmatized conditions. People with overweight and obesity face discrimination in all sectors of society, including healthcare, which can have negative physical and psychological consequences. Therefore, when informing about overweight as a cancer risk factor, it is important to consider the risk of reinforcing the widespread stigmatization of people with overweight.

In a new interview study, I and three other researchers explore how people with overweight are affected by health information about the link between overweight and cancer. Participants highlighted several ethically important factors to consider when communicating this health risk, such as the risk of stigmatization, the distribution of responsibility for treatment and prevention, and the need for empathy. Participants perceived risk information about the link between overweight and cancer as personally important. It concerns their bodies and health. However, the information was burdensome to carry. It felt tough to be singled out as high-risk for cancer. This was partly because they found it difficult to act on the information, knowing how hard it is to lose weight: “No one is overweight by choice.” The information could therefore have counterproductive consequences such as anxiety and overeating. It could also reinforce feelings of failure and increase self-hatred. Many participants reported negative experiences from healthcare encounters where they felt judged and misunderstood. Moreover, adequate support for weight loss is often lacking. The information thus becomes meaningless, they argued, and was perceived as offensive and patronizing.

The study participants contributed several suggestions for improvement. They called for information that includes the complex causes of overweight and clear guidance on how to reduce cancer risk in various ways – not just through weight loss, but also through alternative methods. They also emphasized the importance of healthcare professionals showing empathy and offering person-centred care that considers the individual’s unique situation and needs. This includes concrete and feasible advice, as well as support for patients in their efforts to improve their health.

In our article, we emphasize that health communication often lacks both ethical considerations and clear objectives (beyond the obligation to be transparent). Public health interventions should, like clinical interventions, be based on ethical considerations and principles where the positive effects of the intervention are weighed against potential negative effects (or “side effects”). Sometimes, some harm may be acceptable if the benefit is sufficiently great. But currently, the benefit of information about the link between overweight and cancer appears minimal or non-existent, making negative consequences unacceptable. Our conclusion is that such risk information for people with overweight and obesity, if it is to promote health and avoid causing harm, should be empathetic, supportive, and based on an understanding of the complex causes of overweight. By acting responsibly and compassionately, healthcare professionals and researchers can help improve health outcomes for this target group.

If you want to read our interview study, you can find it here: Perceptions of cancer risk communication in individuals with overweight or obesity – a qualitative interview study.

Want to know more?

European Coalition for People living with Obesity

Different links between overweight and cancer risk – Uppsala University

Written by…

Åsa Grauman, researcher at the Centre for Research Ethics & Bioethics.

Grauman, Å., Sundell, E., Nihlén Fahlquist, J., Hedström, M. Perceptions of cancer risk communication in individuals with overweight or obesity – a qualitative interview study. BMC Public Health 25, 1900 (2025). https://doi.org/10.1186/s12889-025-23056-w

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We care about communication

Ethics as an integral part of standard care

Four people sitting at a table, and a women in a black shirt sitting in front of a laptop. Photo: Cottonbro, from Pexels.
25 February, 2025 / / 1 Comment

Healthcare professionals experience ethical dilemmas and ethically challenging situations on a daily basis. A child receiving important treatment may have difficulty sitting still. How should one think about physically restraining children in such situations? In order to provide good care, healthcare professionals may regularly need time and support to reflect on ethical dilemmas that may arise in their work.

Experiences from an attempt to introduce regular reflection on ethics cases are reported in an article with Pernilla Pergert as the main author. Staff in pediatric cancer care received training in conducting so-called ethics rounds, where healthcare professionals meet to discuss relevant ethics cases. The course participants were assigned to arrange ethics rounds at their respective workplaces both during and after the training. They were then interviewed about their experiences. Hopefully, the results can help others who are planning to introduce ethics rounds.

The experiences revolved around the challenge of positioning ethics in the workplace. How do you find time and space for regular ethical reflection in healthcare? Positioning ethics was not least about the status of ethics in a healthcare organization that prioritizes direct patient care. From such a perspective, ethics rounds may be seen as a luxury that does not really belong to the care work itself, even though ethical reflection is necessary for good care.

The interviewees also spoke about different strategies for positioning ethics. For example, it was considered important that several interested parties form alliances where they collaborate and share responsibility for introducing ethics rounds. This also helps ensure that several different professional groups can be included in the ethics rounds, such as physicians, nurses, social workers and psychologists. It was also considered important to talk about the ethics rounds and their benefits at staff meetings, as well as to identify relevant patient cases with ethical dilemmas that may create concern, uncertainty and conflicts in the care work. These ethical dilemmas do not have to be big and difficult, also more frequently occurring everyday ethical challenges need to be discussed. Finally, the importance of scheduling the ethics rounds at fixed times was emphasized.

The authors conclude that their study highlights the need to position ethics in healthcare so that staff can practice ethics as part of their care work. The study also exemplifies strategies for achieving this. A major challenge, the authors emphasize, is the polarization between care and ethics, as if ethics were somehow outside the actual care work. But if ethical dilemmas are part of everyday healthcare, then ethics should be seen as an integral part of standard care, the authors argue.

Read the article here: Positioning Ethics When Direct Patient Care is Prioritized: Experiences from Implementing Ethics Case Reflection Rounds in Childhood Cancer Care.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Pergert, P., Molewijk, B. & Bartholdson, C. Positioning Ethics When Direct Patient Care is Prioritized: Experiences from Implementing Ethics Case Reflection Rounds in Childhood Cancer Care. HEC Forum (2024). https://doi.org/10.1007/s10730-024-09541-6

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We like real-life ethics

Do the goals of care reflect the elderly patient’s personal preferences?

Elderly person with a golden ring on their finger.
14 January, 2025 / / 1 Comment

Person-centered care is not only an ethical approach that values ​​the patient’s personal preferences and decision-making. It is also a concrete way to improve care and the patient’s quality of life. This is especially important when caring for elderly patients, who may have multiple chronic conditions and various functional limitations. This requires sensitivity to the patient’s description of their situation and joint planning to adapt care to the patient’s individual needs and wishes. The care plan should be documented in the patient’s medical record in the form of evaluable goals.

A new Swedish study investigated the presence of person-centered, evaluable goals in the care plans for patients at a geriatric psychiatric outpatient clinic. It was found that the goals documented in the patients’ medical records had a biomedical focus on the disease: on recovery or on reduced symptoms. Although the analysis of the medical records revealed that the patients themselves also expressed other needs, such as existential needs and the need for support in carrying out everyday activities they perceived were important for a better quality of life, these personal wishes were not reflected in the care plans in the form of evaluable goals.

A biomedical focus on disease treatment could also manifest itself in the form of decisions to reduce the prescription of addictive drugs, without the care plan indicating alternative measures or mentioning the effects that this medical goal could have on the patient.

The authors point out that the fact that the medical records nevertheless documented the patients’ personal wishes indicates that there was a certain degree of person-centered interaction with the patients. However, since the conversations did not result in documented goals of care, the person-centered process seems to have stopped halfway, the authors argue in their discussion of the results. The patients’ stories were included, but were not incorporated into the medical decision-making process and the planning of care.

An aim of the study was also to examine psychiatric care plans at the end of life. Although the proximity to death and the possibility of palliative care could be mentioned in the medical records, the goals were rarely changed from curative to palliative care. Moreover, neither the healthcare professionals nor the patients seemed to view psychiatric care as part of palliative care. On the contrary, they seemed to view palliative care as a reason to end psychiatric care. None of the few decisions to change the focus of care led in practice to any straightforward palliative approach.

The absence of the concept of palliative care, despite the fact that the patients were close to death when the studied goals of care were established, is surprising, according to the authors. Conversations about goals and hopes at the end of life should be self-evident in geriatric psychiatry, and in their discussion, the authors suggest concrete tools that are already available to support such conversations. Given the complex combination of conditions and the proximity to death, there are strong reasons to formulate care plans with an increased focus on improved quality of life and not just on restored mental health, the authors argue.

In their conclusion, the authors point out the need for more research on how person-centered care interacts with the planning of evaluable goals. They also point out the importance of a palliative approach in geriatric psychiatric care, where patients may suffer from multiple concurrent conditions as well as more or less severe and long-term mental disorders.

Read the article here: Psychiatric Goals of Care at the End of Life: A Qualitative Analysis of Medical Records at a Geriatric Psychiatric Outpatient Clinic.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Kullenberg, Helena, Helgesson, Gert, Juth, Niklas, Lindblad, Anna, Psychiatric Goals of Care at the End of Life: A Qualitative Analysis of Medical Records at a Geriatric Psychiatric Outpatient Clinic, Journal of Aging Research, 2024, 2104985, 10 pages, 2024. https://doi.org/10.1155/jare/2104985

This post in Swedish

Ethics needs empirical input

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