The Ethics Blog

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

Tag: paediatric cancer

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

This post in Swedish

Ethics needs empirical input

Ethical challenges when children with cancer are recruited for research

28 March, 2023 / / 1 Comment

Cancer is a common cause of death among children, but improved treatments have significantly increased survival, especially in high-income countries. A prerequisite for this development is research.

When we think of a hospital, we think mainly of the care given to patients there. But care and research are largely developed together in the hospitals. Treatments given in the hospitals are tested in research carried out in the hospitals. This overlap of care and research in the same setting creates ethical challenges. Not least because it can be difficult to see and maintain the differences when, as I said, the activities overlap.

Kajsa Norbäck, PhD student at CRB, investigates in an interview study Swedish healthcare professionals’ perceptions and experiences of ethical challenges when children with cancer are recruited for research in the hospitals where they are patients. Research is needed for future childhood cancer care, but what are the challenges when approaching children with cancer and their parents with the question of research participation?

The interview material is rich and difficult to summarize in a blog post, but I want to highlight a few findings that particularly impressed me. I recommend those interested to take the time to read the entire article in peace and quiet. Interview studies provide a living direct contact with reality from the perspective of the interviewees. Kajsa Norbäck writes that interview studies give us informative examples of ethical challenges. Such examples are needed to give the ethical reflection concreteness and grounding in reality.

The interviewed healthcare professionals particularly emphasized the importance of establishing a trusting relationship with the family. Only when you have such a relationship does it make sense to discuss possible research participation. Personally, I cannot help but interpret it as meaning that the care relationship with patient and family must be established first. It is within the framework of the care relationship that possible research participation can be discussed in a trusting manner. But trust can also be a dilemma, the interviews show. The interviewees stated that many families had so much trust in healthcare and research that it could feel too easy and predictable to get consent for research participation. They also had the impression that parents could sometimes give consent to research out of fear of not having done everything they could to save the child, as if research was a last chance to get effective care.

The challenge of managing the overlap of care and research also extends to the professional role of the physician. Physicians have a care responsibility, but since the care they can offer rests on research, they also feel a research responsibility: they feel a responsibility to recruit research participants from among their patients. This dual responsibility can naturally create conflicts of interest, of which they give informative examples in the interviews.

In the middle of this force field of challenges we have the child, who may have difficulty making itself heard, perhaps because many of us have difficulty being a listener. Here is what one of the interviewees says: “We often talk about informing and I think that’s a strange word. I think the greatest competence is to listen.” There is a lot to listen to in Kajsa Norbäck’s interview study as well, more than I can reproduce in a blog post. Read her article here: Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences.

Pär Segerdahl

Written by…

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

Norbäck, K., Höglund, A.T., Godskesen, T. and Frygner-Holm, S. Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences. BMC Medical Ethics 24, 23 (2023). https://doi.org/10.1186/s12910-023-00901-4

This post in Swedish

Ethics needs empirical input

YouTube as a source of information on paediatric cancer trials

opening YouTube on phone
5 October, 2021 / / 1 Comment

YouTube has become an easily accessible source of information on a variety of issues, from how to fix a puncture to what Plato meant by love, and much more. Of course, YouTube can also serve as a source of health information. Regarding certain issues of health, it may be of importance to review whether the information in the uploaded videos is reliable.

A sensitive research ethical issue is what it means for children to participate in clinical cancer trials. Parents of children with cancer can be asked to give informed consent, agreeing to let their child to participate in such a study. Since the information from the researchers is difficult to understand, as is the whole situation of the family, it is conceivable that many choose to obtain information from the Internet and social media such as YouTube. If so, what kind of information do they get? Is the information ethically satisfactory?

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund and Stefan Eriksson recently conducted a review of YouTube as a source of information on clinical trials for paediatric cancer. The survey was limited to videos in English posted 2010 or later, not more than 20 minutes long and with more than 100 views. Most of the videos had been produced by centres, hospitals or foundations that conduct paediatric cancer studies. The videos were graded using an instrument (DISCERN), the questions of which were adapted to the purpose of measuring the research ethical reliability of the videos. The authors found that 20 percent of the videos were useful without serious shortcomings; almost 50 percent of the videos were misleading with serious shortcomings; 30 percent were classified as inappropriate sources of information. No video could be classified as excellent.

The quality of the videos was thus generally low from a research ethical point of view. A particularly serious problem had to do with the fact that half of the videos focused on new experimental treatments or innovative early clinical trials with children whose cancer had recurred or where the standard treatment had failed. In such Phase 1 clinical trials, one mainly investigates what doses of the drug can be given without too many or too severe adverse effects. Such studies cannot be expected to have any positive therapeutic effect for these children. Instead of emphasizing this ethical difficulty in Phase 1 trials, a hopeful affective language was used in the videos suggesting new therapeutic possibilities for the children.

The authors draw the practical conclusion that children with cancer and their parents may need advice on the quality of the often anecdotal healthcare information that can be found in videos online. Because video is simultaneously an excellent medium for information to both parents and children, the authors suggest that healthcare providers produce and upload high-quality information on clinical paediatric cancer studies.

Read the article in the journal Information, Communication & Society: YouTube as a source of information on paediatric cancer trials.

Pär Segerdahl

Written by…

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

Tove Godskesen, Sara Frygner Holm, Anna T. Höglund & Stefan Eriksson (2021) YouTube as a source of information on clinical trials for paediatric cancer, Information, Communication & Society, DOI: 10.1080/1369118X.2021.1974515

This post in Swedish

We care about communication