Tag: children (Page 1 of 2)

The importance of ethical review in research with severely ill children

5 September, 2023 / kajsanorbergwieslander / 1 Comment

Research ethics committees play an important role in safeguarding human beings in research. Respect for human dignity in research has not always been self-evident. The emergence of research ethics has taken place in the wake of ethical scandals and abuses in which society’s most vulnerable have been used and exploited in the name of science. I am thinking, for example, of the Nazis’ cruel medical experiments on children and other vulnerable people.

At a time when the role of ethical review is being vigorously debated in the media and the research community, it is important to do research on the significance of ethical review. In particular, we should explore the question how ethical review serves to protect those most vulnerable from being exploited in research.

In a recent study conducted by myself together with Anna T. Höglund, Sara Frygner-Holm and Tove Godskesen, we focus on ethical issues in research with ill children, who are often considered a particularly vulnerable group in research. We have interviewed members of the Swedish Ethical Review Authority about their perceptions of ethical issues in research applications involving ill children, for example children with cancer.

One thing that members really emphasized was how crucial it is that the researcher provides good, age-appropriate information to children when they invite them to research. Without good information, children are excluded from being involved in a meaningful way in decisions about research participation. Many of the members we interviewed were concerned that good information for children was often missing from research applications. This suggests that we as researchers may need to increase our efforts to really take children’s legal right to information and participation seriously and not leave the decisions about research participation to the parents alone. There might be a need for more practical guidance on how we can inform and ask children about research in an ethically sound and sustainable way.

Children’s active participation in decisions about research participation is ethically important, but so is of course also children’s right to be protected from various risks associated to research. Some populations of severely ill children are “heavily researched,” among them children with cancer. This is of course very good because it enables groundbreaking medical advances in childhood cancer care and treatment. But at the same time, we know that children and their parents can be particularly vulnerable when recruited to research, due to their challenging life situation. They are also very dependent on the healthcare system. For such reasons, the committee members in the study considered it essential that the children’s physical as well as mental health and integrity are sufficiently protected. This means that as a researcher, you should not only focus on medical risks, but also consider how the whole child is affected, both short and long term, by being part of your research project.

The members we interviewed felt they had an ethical responsibility to protect children from “bad research” – when severely ill children give of their precious time and energy, it is especially important that the research is of high scientific quality and answers research questions that are truly important, new and urgent. It has been controversial whether or not research ethics committees should assess the design and quality of research. However, as shortcomings in design and quality can significantly reduce the potential benefits of a project, such aspects should be assessed as part of the ethical review, so that ill children can be spared participation in research that is not likely to lead to new knowledge or medical advances.

Ethical review is governed by laws and regulations. Some members were concerned that the ethical review system risks becoming too one-sidedly focused on legal compliance and formalities, giving ethical reflection to little space. Ethical review of research involving severely ill children undoubtedly places high demands not only on legal competence, but also on clinical and ethical competence, good teamwork and personal qualities such as accuracy and responsibility. Moreover, the emergence of new advanced technologies in research and healthcare constantly presents research ethics committees with new complex ethical issues to ponder and address. Thankfully, philosophy and its ethical principles offer invaluable tools!

So, what is the role and significance of ethical review in research with ill children? As our study suggests, ethical review and research ethics committees have, among other things, a crucial role in monitoring and promoting children’s right to information, participation and protection from harm and risks in research. These are urgent tasks, both from a children’s rights perspective and a research ethics perspective. If you want to know more about our results and read our discussion of the findings, you can find the study here: Research ethics committee members’ perspectives on paediatric research: a qualitative interview study.

Children’s perspectives have not been represented in research ethics to any great extent and more knowledge is therefore needed regarding children’s own experiences of research participation. Therefore, in an upcoming study, we will now interview children with cancer and their parents about how they experienced being asked to participate in research.

Written by…

Kajsa Norberg Wieslander, PhD student at the Centre for Research Ethics & Bioethics, is exploring ethical and clinical aspects of recruiting children with cancer to research studies.

Norberg Wieslander, K., Höglund, A. T., Frygner-Holm, S., & Godskesen, T. (2023). Research ethics committee members’ perspectives on paediatric research: a qualitative interview study. Research Ethics, 0(0). https://doi.org/10.1177/17470161231179663

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Ethics needs empirical input

Encourage children to take responsibility for others?

30 May, 2023 / Pär Segerdahl / 1 Comment

It happens that academics write visionary texts that highlight great human challenges. I blogged about such a philosophically visionary article a few years ago; an article in which Kathinka Evers discussed the interaction between society and the brain. In the article, she developed the idea that we have a “proactive” responsibility to adapt our societies to what we know about the brain’s strengths and weaknesses. Above all, she emphasized that the knowledge we have today about the changeability of the brain gives us a proactive responsibility for our own human nature, as this nature is shaped and reshaped in interaction with the societies we build.

Today I want to recommend a visionary philosophical article by Jessica Nihlén Fahlquist, an article that I think has points of contact with Kathinka Evers’ paper. Here, too, the article highlights our responsibility for major human challenges, such as climate and, above all, public health. Here, too, human changeability is emphasized, not least during childhood. Here, too, it is argued that we have a responsibility to be proactive (although the term is not used). But where Kathinka Evers starts from neuroscience, Jessica Nihlén Fahlquist starts from virtue ethics and from social sciences that see children as social actors.

Jessica Nihlén Fahlquist points out that we live in more complex societies and face greater global challenges than ever before in human history. But humans are also complex and can under favorable circumstances develop great capacities for taking responsibility. Virtue ethics has this focus on the human being and on personal character traits that can be cultivated and developed to varying degrees. Virtue ethics is sometimes criticized for not being sufficiently action-guiding. But it is hard to imagine that we can deal with major human challenges through action-guiding rules and regulations alone. Rules are never as complex as human beings. Action-guiding rules assume that the challenges are already under some sort of control and thus are not as uncertain anymore. Faced with complex challenges with great uncertainties, we may have to learn to trust the human being. Do we dare to trust ourselves when we often created the problems?

Jessica Nihlén Fahlquist reasons in a way that brings to mind Kathinka Evers’ idea of a proactive responsibility for our societies and our human nature. Nihlén Fahlquist suggests, if I understand her correctly, that we already have a responsibility to create environments that support the development of human character traits that in the future can help us meet the challenges. We already have a responsibility to support greater abilities to take responsibility in the future, one could say.

Nihlén Fahlquist focuses on public health challenges and her reasoning is based on the pandemic and the issue of vaccination of children. Parents have a right and a duty to protect their children from risks. But reasonably, parents can also be considered obliged not to be overprotective, but also to consider the child’s development of agency and values. The virus that spread during the pandemic did not cause severe symptoms in children. Vaccination therefore does not significantly protect the child’s own health, but would be done with others in mind. Studies show that children may be capable of reasoning in terms of such responsibility for others. Children who participate in medical research can, for example, answer that they participate partly to help others. Do we dare to encourage capable children to take responsibility for public health by letting them reason about their own vaccination? Is it even the case that we should support children to cultivate such responsibility as a virtue?

Nihlén Fahlquist does not claim that children themselves have this responsibility to get vaccinated out of solidarity with others. But if some children prove to be able to reason in such a morally complex way about their own vaccination, one could say that these children’s sense of responsibility is something unexpected and admirable, something that we cannot demand from a child. By encouraging and supporting the unexpected and admirable in children, it can eventually become an expected responsibility in adults, suggests Jessica Nihlén Fahlquist. Virtue ethics makes it meaningful to think in terms of such possibilities, where humans can change and their virtues can grow. Do we dare to believe in such possibilities in ourselves? If you do not expect the unexpected you will not discover it, said a visionary Greek philosopher named Heraclitus.

Jessica Nihlén Fahlquist’s article is multifaceted and innovative. In this post, I have only emphasized one of her lines of thought, which I hope has made you curious about an urgent academic text: Taking risks to protect others – pediatric vaccination and moral responsibility.

In summary, Jessica Nihlén Fahlquist argues that vaccination should be regarded as an opportunity for children to develop their sense of responsibility and that parents, schools, healthcare professionals and public health authorities should include children in debates about ethical public health issues.

Written by…

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

Jessica Nihlén Fahlquist, Taking Risks to Protect Others – Pediatric Vaccination and Moral Responsibility, Public Health Ethics, 2023;, phad005, https://doi.org/10.1093/phe/phad005

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Approaching future issues

Who belongs to us?

2 October, 2019 / Pär Segerdahl / 1 Comment

Bioethics has a problem with human beings, the philosopher Roland Kipke writes. It must ask who belongs to our moral community. Who has rights? Who has human dignity? Who has the moral status usually attributed to healthy adult humans? Who has the right to life?

The question is: Who belongs to us? Are human embryos included in the community? Newborns? Those with advanced dementia? Intelligent animals?

A common response to the question is to propose a philosophical criterion. Two positions dominate in bioethics. One includes all biological human beings, thereby embryos, newborns and those with advanced dementia. Everyone who belongs to the species Homo sapiens belongs to the moral community.

The second position holds that species membership is irrelevant. Instead, the focus is on mental capacities that one holds characterize a “person.” For example, rationality and self-awareness. This excludes embryos, newborns and those with advanced dementia from the community. However, a rational chimpanzee may enter. All persons belong to the moral community, regardless of species affiliation.

Kipke shows how both criteria compel us to answer the question “Who belongs to us?” in ways that contradict most people’s moral intuitions. We might accept this if the positions could be justified by strong arguments, he says. However, such arguments are missing.

What should a poor philosophical gatekeeper do then? Who should be admitted into the community? Who should be kept out?

The solution to the gatekeeper’s dilemma, Kipke suggests, is our ordinary concept of the human. When we talk about “humans,” we usually do not use the scientific concept of a biological species. Our everyday concept of a human already has moral dimensions, he points out. We cannot see a human being without seeing a living person belonging to our community. According to this third position, all humans belong to the moral community.

The only problem is that the gatekeeper needs a criterion to distinguish the human members of the community. It is true that we have everyday uses of the word “human.” It is also true that we normally have no difficulties in distinguishing a human being. However, do these uses really contain a criterion suitable for more philosophical gatekeeper tasks? They do, according to Kipke. He holds that there is a characteristic “living human gestalt or the form of the body,” especially the face, which easily allows recognition of a human being, even when she is seriously injured and deformed.

The “living human form” would thus be the criterion. This form makes us equals in the moral community.

Kipke’s article is philosophically exciting and his criticism of the two dominant positions is revealing. Personally, I nevertheless find the still dominant preoccupation with the question “Who belongs to us?” somewhat terrifying, and perhaps even inhuman. Bioethics treats human concerns about, for example, genetics and stem cell research. Admittedly, people often express their concerns in the form of boundary issues. People who worry about the destruction of embryos in stem cell research, for example, can talk about the embryo as a human individual or as a potential person. However, addressing their worries by suggesting that our common language contains a criterion that has the authority to separate the members of the moral community will probably not still the minds of such worried and perhaps even angry humans. They need a lot more attention. Perhaps it turns out that the intellectual boundary issue concealed the living source of their concerns and made it impossible to treat the problem at its source.

I believe we need a bioethics that responds to moral concerns more humanly and communicatively than only as philosophical boundary issues. Could we not use our ordinary language to think together about the issues that worry us? To refer to an ordinary concept of the human as an arbiter that supposedly dictates the answers to bioethical boundary issues seems characteristic of a smaller community: one that is professionally preoccupied with philosophical boundary issues.

Is that not placing bioethics before life? Is it not putting the cart before the horse?

Pär Segerdahl

Kipke R. Being human: Why and in what sense it is morally relevant. Bioethics. 2019;00:1–11. https://doi.org/10.1111/bioe.12656

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Speaking to 5-year-olds about research (By Sara Frygner-Holm)

23 October, 2018 / Pär Segerdahl / 0 Comments

How should we talk to children about research? And how should we go about recruiting them to studies? For children to become research participants, their parents must consent. Regulation states children should also give assent themselves, to as great extent as possible. Our ethics committees require us to provide them with age-appropriate information. Health care providers and researchers think the system works well and is ethically “correct.”

From recruiting numerous children for various research projects, I have some thoughts on the subject. I have put together countless information letters for children of various ages; all reviewed and approved by the ethics committee. But what, exactly, is “age-appropriate information”? With support from developmental psychology and some paediatric research, the ambitious paediatric researcher can get it right. On a group level, that is. We can estimate what the average kid of a certain age group understands. But how appropriate is the “age-appropriate” information for individual children? In his poem Till eftertanke, Søren Kirkegard wrote “To help someone, I must indeed understand more than they do, but first and foremost understand what they understand.”

Today, I value a slow and calm recruiting process. I talk to the children about what research is, most 5-year-olds actually have an idea. We speak about what the project is about, and what we want them to contribute. Perhaps we draw or look at pictures. I tell them that it is absolutely fine to change your mind and leave at any time, and that no one will be angry or upset with them if they do. And then we talk some more… Lastly, and most importantly, I ask the child to tell me what we talked about, and what we agreed upon. It takes some time to understand their understanding. Give yourself that time.

Not until I understand that the child has understood do I ask them to sign the consent form.

Sara Frygner-Holm

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Can a robot learn to speak?

29 May, 2018 / Pär Segerdahl / 0 Comments

There are self-modifying computer programs that “learn” from success and failure. Chess-playing computers, for example, become better through repeated games against humans.

Could a similar robot also learn to speak? If the robot gets the same input as a child gets when it learns to speak, should it not be possible in principle?

Notice how the question zigzags between child and machine. We say that the robot learns. We say that the child gets input. We speak of the robot as if it were a child. We speak of the child as if it were a robot. Finally, we take this linguistic zigzagging seriously as a fascinating question, perhaps even a great research task.

An AI expert and prospective father who dreamed of this great research task took the following ambitious measures. He equipped his whole house with cameras and microphones, to document all parent-child interactions during the child’s first years. Why? He wanted to know exactly what kind of linguistic input a child gets when it learns to speak. At a later stage, he might be able to give a self-modifying robot the same input and test if it also learns to speak.

How did the project turn out? The personal experience of raising the child led the AI expert to question the whole project of teaching a robot to speak. How could a personal experience lead to the questioning of a seemingly serious scientific project?

Here, I could start babbling about how amiably social children are compared to cold machines. How they learn in close relationships with their parents. How they curiously and joyfully take the initiative, rather than calculatingly await input.

The problem is that such babbling on my part would make it seem as if the AI expert simply was wrong about robots and children. That he did not know the facts, but now is more well-informed. It is not that simple. For the idea behind the project presupposed unnoticed linguistic zigzagging. Already in asking the question, the boundaries between robots and children are blurred. Already in the question, we have half answered it!

We cannot be content with responding to the question in the headline with a simple, “No, it cannot.” We must reject the question as nonsense. Deceitful zigzagging creates the illusion that we are dealing with a serious question, worthy of scientific study.

This does not exclude, however, that computational linguistics increasingly uses self-modifying programs, and with great success. But that is another question.

Pär Segerdahl

Beard, Alex. How babies learn – and why robots can’t compete. The Guardian, 3 April 2018

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Risks of discrimination in population-based biobanks

4 April, 2018 / Pär Segerdahl / 0 Comments

Even good intentions can cause harm. Considerately treating certain groups as “vulnerable,” such as pregnant women and children, can cause discrimination against them. If we protect them from participation in clinical research, we know less about how they respond to medical treatments. They are therefore exposed to greater risks when they are patients in need of medical treatment. Thanks for your concern.

Deborah Mascalzoni points out possible discrimination patterns in population-based biobank research. She particularly highlights people with psychiatric conditions, who often are excluded from such studies. However, she also mentions children, who rarely are included in population-based biobanks, as well as people with early forms of dementia or addiction problems.

Mascalzoni thus asks how representative population-based biobanks really are. This is important, as results from such research are increasingly used in the planning of care. We need to see these potential discrimination patterns more clearly, so that people suffering from psychiatric conditions, for example, have similar opportunities to benefit from research as others.

However, the patterns are caused not only by how we think of certain groups as “vulnerable.” Even practical difficulties, to which you may not give much thought, can cause discrimination. It is ethically and legally cumbersome to recruit children as research participants. People suffering from depression may have suicidal thoughts, which requires special efforts. People with early symptoms of dementia may have difficulty understanding complex information, which complicates the process of informed consent.

Some groups are in practice more difficult to recruit to population-based biobanks. Not only our consideration of certain groups as “vulnerable,” then, but also practical obstacles to which we do not pay attention, may cause biased research results, which may lead to poorer care for certain groups. There is therefore reason to ask about representativeness.

Pär Segerdahl

Mascalzoni, D. 2017. Reverse discrimination for psychiatric genetic studies in population-based biobanks. European Neuropsychopharmacology 27: 475-476

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The New Yorker features resignation syndrome

29 March, 2017 / Pär Segerdahl / 0 Comments

Last year I wrote a post about resignation syndrome in children in families who are denied asylum in Sweden. I described a hypothesis about the syndrome suggested by Karl Sallin, PhD student at CRB in the field of neuroethics and neurophilosophy.

An intuitive explanation is that the syndrome is a reaction to prolonged stress and depression. A reaction that is triggered when the family is denied asylum. However, if the explanation is correct, the syndrome should exist on a similar scale also in other countries that receive refugee families. It seems it does not.

To understand what happens to these children, we should, Karl Sallin suggested, see it as a psychological reaction that occurs in the meeting between certain cultures and Swedish cultural conditions. For another peculiarity is the fact that the syndrome occurs mainly in families from certain parts of the world. We are dealing with a culture bound psychopathology, Sallin proposed in Frontiers in Behavioral Neuroscience.

The New Yorker recently wrote about this “Swedish” syndrome, in a long article in which Karl Sallin interviewed.

The article contains a touching description of how one of these children falls ill when the family is denied asylum. For several months, he is confined to bed, not contactable, and he must be tube fed. When the family gets permanent residence, they try to convey this to the boy. After two weeks, he begins to open his eyes. After a further seven weeks, the nasal tube taped to his cheek falls out. Finally, he can return to school and begin to talk about the disease.

The article in The New Yorker emphasizes that the syndrome is a culture-bound psychopathology. However, the tendency seems to be to point out Sweden’s crumbling self-image as the relevant cultural context for the disease. We see “apathetic refugee children” as symbols of our own moral failure to treat them and their families humanely. Therefore, we tube feed them without further treatment, while waiting for the family to hopefully get their residence permit. This creates a culture where children become sick when their families are denied asylum.

This can hardly be the whole explanation, since it then becomes difficult to understand why mainly children from certain parts of the world are afflicted. Moreover, mainly children who come together with their families, rather than unaccompanied refugee children. The cultural dynamics seems to be more complex than the desire to find scapegoats for the syndrome can handle.

Pär Segerdahl

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Legal abortion: the right to move on

13 April, 2016 / Pär Segerdahl / 0 Comments

With brave new ideas you can astonish the world. In the past months the youth association of the Swedish party, the Liberals, made several proposals that astonished not least the mother party – for example, that incest and necrophilia should be allowed. The state should not control individuals’ love life.

Probably, the young politicians are quite proud of their radicalism. They are more liberal than liberalism itself. But what is their radicalism made of?

In March, another radical proposal was made. This time it was about abortion. Women have the right to choose abortion until the 18th week of pregnancy. But men don’t have a corresponding right to opt out of their parenthood. The proposal is about correcting this unfair distribution of the freedom to decide about parenthood.

How? By giving men the right to disclaim paternity until the 18th week of pregnancy: so-called legal abortion. Through the proposal, men get the same right as women to decide if they want to become parents. Thus, justice is restored.

One can surmise that the mother party dreams of making their own little abortion. But listen to how splendid it can sound when one astonishes the world with brave new ideas:

“It’s about men also being able to choose whether they want to become parents or not.”
“Men should have the same right to opt out of parenthood.”

Indeed, it sounds magnificent: the liberal youth association wants to correct a fundamental asymmetry between the rights of men and women! They are fighting for a more equal society!

I suggest that the “equality” here is purely verbal. It sits on the surface of an individualist language of rights and freedoms, with the words “man,” “woman” and “equal right.” Scratch the surface and the beautiful symmetry disappears.

One thing that is hidden by the jargon, for example, is that the woman’s decision concerns a fetus. But if she doesn’t abort, the man’s abortion decision will be about a child who will be born, and who will live, “legally aborted.”

Another thing that is hidden is that if the woman chooses abortion, neither party becomes a parent, because no child is born. But if she gives birth to the baby, the man will be the father of the child, whether he disclaims legal paternity or not. Law is not everything in life. When a child is born, there is a parenthood that cannot be disclaimed, for the child can say: “My father aborted me.” Only the woman’s abortion decision can completely abolish parenthood.

A third thing that is hidden is that something rings false in the individualist talk about parenthood as my parenthood and your parenthood; as the woman’s parenthood and the man’s. To crown it all, the fetus as well as the child are absent in this reasoning about male and female parenthood – curious! Are they already aborted? Did the young politicians forget something rather central, in their eagerness to develop truly liberal ideas about parenthood?

In order not to be disturbed by all this, in order not hear how false it rings, one must purify an individualist jargon of rights and freedoms, and then lock oneself in it. This is where the youth association’s radicalism lies: in language. It purifies (parts of) the language of liberalism, but as mere linguistic exercises with the words “man,” “woman” and “equal right.”

The radicalism isn’t political, but linguistic. Therefore, one feels instinctively that the discussion that the youth association wants to start up cannot be political, but merely continued exercise of pure concepts – like when schoolchildren plod through grammatical examples to one day be able to speak a language that still is foreign to them.

Ludwig Wittgenstein described such pure conceptual exercises as language that idles, like an engine can idle without doing its work. In this case, it is the language of liberalism that is idling.

I propose a good dose of Wittgenstein.

Pär Segerdahl

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Resignation syndrome in refugee children – a new hypothesis

22 February, 2016 / Pär Segerdahl / 6 Comments

There has been much discussion about the so-called “apathetic children” in families seeking asylum in Sweden. You read that right: in Sweden, not in other countries. By all accounts, these children are genuinely ill. They do not simulate total lack of willpower; like inability to eat, speak and move. They are in a life-threatening condition and show no reactions even to painful stimuli. But why do we have so many cases in Sweden and not in other countries?

Several hundred cases have been reported, which in 2014 led the Swedish National Board of Health and Welfare to introduce a new diagnosis: resignation syndrome. The “Swedish” syndrome appears to be a mystery, almost like a puzzle to crack. There are asylum seeking families all around the world: why does this syndrome occur to such an extent in a single country?

If you want to think more about this puzzling question, I recommended a new article in Frontiers in Behavioral Neuroscience, with Karl Sallin (PhD student at CRB) as first author. The article is long and technical, but for those interested, it is well worth the effort. It documents what is known about the syndrome and suggests a new hypothesis.

A common explanation of the syndrome is that it is a reaction to stress and depression. The explanation sounds intuitively reasonable, considering these children’s experiences. But if it were true, the syndrome should occur also in other countries. The mystery remains.

Another explanation is that the mother attempts to manage her trauma, her depression and her needs, by projecting her problems onto the child. The child, who experiences the mother as its only safety, adapts unconsciously and exhibits the symptoms that the mother treats the child as if it had. This explanation may also seem reasonable, especially considering another peculiarity of the syndrome: it does not affect unaccompanied refugee children, only children who arrive with their families. The problem is again: traumatized refugee families exist all around the world. So why is the syndrome common only in Sweden?

Now to Sallins’ hypothesis in the article. The hypothesis has two parts: one about the disease or diagnosis itself; and one about the cause of the disease, which may also explain the peculiar distribution.

After a review of symptoms and treatment response, Sallin suggests that we are not dealing with a new disease. The introduced diagnosis, “resignation syndrome,” is therefore inappropriate. We are dealing with a known diagnosis: catatonia, which is characterized by the same loss of motor skills. The children moreover seem to retain awareness, even though their immobility makes them seem unconscious. When they recover, they can often recall events that occurred while they were ill. They just cannot activate any motor skills. The catatonia hypothesis can be tested, Sallin suggests, by trying treatments with known responses in catatonic patients, and by performing PET scans of the brain.

The question then is: Why does catatonia arise only in refugee children in Sweden? That question brings us to the second part of the hypothesis, which has some similarities with the theory that the mother affects the child psychologically to exhibit symptoms: really have them, not only simulate them!

Here we might make a comparison with placebo and nocebo effects. If it is believed that a pill will have a certain impact on health – positive or negative – the effect can be produced even if the pill contains only a medically inactive substance. Probably, electromagnetic hypersensitivity is a phenomenon of this kind, having psychological causes: a nocebo effect.

The article enumerates cases where it can be suspected that catatonia-like conditions are caused psychologically: unexpected, unexplained sudden death after cancer diagnosis; death epidemics in situations of war and captivity characterized by hopelessness; acute or prolonged death after the utterance of magic death spells (known from several cultures).

The hypothesis is that life-threatening catatonia in refugee children is caused psychologically, in a certain cultural environment. Alternatively, one could say that catatonia is caused in the meeting between certain cultures and Swedish conditions, since it is more common in children from certain parts of the world. We are dealing with a culture bound psychogenesis.

Sallin compares with an outbreak of “hysteria” during the latter part of the 1800s, in connection with Jean-Martin Charcot’s famous demonstrations of hysterical patients, and where colorful symptom descriptions circulated in the press. Charcot first suggested that hysteria had organic causes. But when he later began to talk about psychological factors behind the symptoms, the number of cases of hysteria dropped.

(Perhaps I should point out that Sallin emphasizes that psychological causes are not to be understood in terms of a mind/body dualism.)

It remains to be examined exactly how meeting Swedish conditions contribute to psychologically caused catatonia in children in certain refugee families. But if I understand Sallin correctly, he thinks that the spread of symptom descriptions through mass media, and the ongoing practice of treating “children with resignation syndrome,” might be essential in this context.

If this is true, it creates an ethical problem mentioned in the article. There is no alternative to offering these children treatment: they cannot survive without tube feeding. But offering treatment also causes new cases.

Yes, these children must, of course, be offered care. But maybe Sallin, just by proposing psychological causes of the symptoms, has already contributed to reducing the number of cases in the future. Assuming that his hypothesis of a culture bound psychogenesis is true, of course.

What a fascinating interplay between belief and truth!

Pär Segerdahl

Sallin, K., Lagercrantz, H., Evers, K., Engström, I., Hjern, A., Petrovic, P., Resignation Syndrome: Catatonia? Culture-Bound? Frontiers in Behavioral Neuroscience 29, January 2016

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Dissertation on palliative care of children with cancer

21 September, 2015 / Pär Segerdahl / 0 Comments

Approximately every fifth child who gets cancer in Sweden dies from their disease. In her dissertation work at CRB, Li Jalmsell studied the care of these children at the end of their life from both the child’s and the parents’ and siblings’ perspectives.

One of her findings is that one doesn’t generally recognize that the child’s cancer is beyond cure until very close to death, giving little time to plan palliative care based on personal preferences.

Jalmsell also did surveys with parents and siblings who lost a child/sibling, and interviewed children with cancer. The children themselves emphasize in the interviews that they want honest information, even when it is bad. But they also want the conversations to be hopeful and contain a plan ahead; and they want to be informed simultaneously with the parents (not after the parents).

The psychological suffering of parents and siblings who lost a child/sibling seems to be influenced by different factors. Parents’ suffering after the child’s death is much dependent on how they experienced the child’s suffering near the end of life. The parents’ suffering also tended to increase if the child underwent bone marrow surgery before death, perhaps because of the hope of a cure that such an intense treatment awakens.

Siblings generally felt ill-informed and unprepared for the child’s death. Siblings who didn’t get opportunity to talk about what they could expect tended to feel anxiety long after the child’s death.

Jalmsell also stresses the importance of parents talking about death with their child. Other studies have shown that parents who don’t talk often regret this afterwards; while parents who talk with the child about death don’t regret it. In Jalmsell’s own study the parents say that the initiative to talk about death often came from the child, often through stories. The child understands its situation.

If you want to read Li Jalmsell’s dissertation, you can find it here:

Towards Good palliation for Children with Cancer: Recognizing the Family and the Value of Communication

It emphasizes the importance of open communication with the whole family.

The public examination is on Friday, September 25, at 09:00, at the Uppsala Biomedical Centre (BMC), room A1:111a. The examination will be conducted in English. Welcome to listen and ask questions!

Pär Segerdahl

Tag: children (Page 1 of 2)

Encourage children to take responsibility for others?

Who belongs to us?

Can a robot learn to speak?

The New Yorker features resignation syndrome

Legal abortion: the right to move on

Resignation syndrome in refugee children – a new hypothesis

Dissertation on palliative care of children with cancer

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