Donald Ewen Cameron is known as the Canadian psychiatrist behind the Montreal Experiments, a series of brainwashing experiments. As part of a larger Central Intelligence Agency (CIA) project known as MK Ultra, the CIA regarded these experiments as a potential military weapon during the Cold War. However, a closer look into Cameron’s research and project MK Ultra shows that these experiments began long before Cameron was contacted by the CIA. Additionally, Cameron received funding for his experiments indirectly, so he was probably never aware the money was from the CIA. In this paper, I analyse the published work of Dr Cameron from the beginning of his career to his role in MK Ultra, and evaluate his own possible reasoning behind these experiments. Donald Ewen Cameron is known for his brainwashing experiments at the Allan Memorial Institute in Montreal, which took place in the late 1950s and early 1960s. Also known as Subproject 68 of the US Central Intelligence Agency (CIA) project MK Ultra, these experiments played a significant role in the CIA’s quest to harness mind control as a weapon during the Cold War. The most well-known narrative around Cameron is that of an accomplice to military torture – a man who ‘sold his soul’ to the CIA and knowingly destroyed the lives of healthy patients. However, this may not be entirely accurate. According to Cameron’s published research, his theories of psychic driving began before he was even contacted (indirectly) by the CIA and originated as a possible treatment for mental disorders. Throughout Cameron’s career, much of his work was focused on searching for a cure for schizophrenia, and his ‘depatterning’ treatments that devastated many lives began with the same goal. Moreover, the CIA officers communicating with Cameron claimed to be from the Society for the Investigation of Human Ecology, so it is entirely likely that Cameron was never aware his research was intended to be used for military purposes. In addition, Cameron was one of the psychiatrists present at the Nuremberg trials to evaluate the mental capability of the accused. These trials served as a lesson to the world on the importance of ethical research practices and, like most people, Cameron concluded that the experiments were horrific. Thus, we are left with the question: how did Cameron become the mind behind such heinous experiments? In this paper, I shall give an overview of: Cameron’s published research; what made him the ideal candidate for MK Ultra; and finally, his own most plausible intentions as a psychiatrist and a researcher.Objective and Experimental Psychiatry, in which he emphasized the importance of rigorous knowledge of biology when studying psychiatry, and highlighted the effects of the environment on an individual organism, citing both British and European schools of psychiatry. He worked as a researcher in Albany, New York, for many years, until the renowned neurosurgeon Dr Wilder Penfield invited him to work at McGill University in Montreal, Canada. In 1943, Cameron set up his research laboratory known as the Allan Memorial Institute in ‘Ravenscrag’, a mansion that formerly belonged to Sir Hugh Allan , Zurich (Switzerland), Manitoba (Canada) and Massachusetts (USA), in that order. In gh Allan .Dr Cameron always believed in a strict scientific method . In his This 1934 study is a prime example of how ethics can be neglected when researchers are set on finding answers. Being exposed to 40º C heat for an hour could put a person at risk of heat exhaustion, and it would certainly not be pleasant to endure. Another paper published by When we think of unethical experiments, what immediately comes to mind is the Nuremberg Trials after World War II. One of the psychiatrists present at the Nuremberg Trials was Dr Ewen Cameron himself. He was sent, along with other British, French, American and Soviet psychiatrists, to evaluate the mental state of Rudolf Hess , Deputy According to Dr H Lehmann, patients’ insanity levels should be classified I–IV, with I being normal and IV being acutely unstable. Lehmann classified Hess as IV-Psychotic, and described him as having ‘[i]mpractical ambition, impulsiveness, reasoning based on symbolism rather than logic, confabulation with a tendency toward the bizarre, as well as a rigid egocentric attitude’, traits that point to ‘schizophrenic personality disintegration’ .. HoweveHistory repeats itself: there are many distinct similarities between the World War II experiments prosecuted at the Nuremberg Trials, and Cameron’s experiments. They were both conducted during periods of political unrest; many of Cameron’s experiments took place in the 1950s when facing the threat of a nuclear war. Among the World War II experiments were extreme cold experiments at Dachau, where victims were placed in vats of cold water or outside in extremely cold conditions, while experimenters recorded their physiological reactions . CameronDuring the Cold War Era of the 1950s, the possibility of a nuclear war with the Soviet Union was such an existential threat that the CIA was determined to make use of the most powerful weapon that they could: the human mind. Mind control was not new to the CIA – in the early 1950s, Project Bluebird was already testing the waters. When Sidney Gottlieb was hired to the CIA in 1951, his supervisor, Allen Dulles instructed him to advance the field. Project Bluebird was expanded and soon became known as Project Artichoke, led by Gottlieb. In the early 1950s, the CIA believed that the Russians and the Chinese already had a handle on mind control techniques, citing brainwashing to explain their immense power over their citizens. Determined to keep up in the arms race, American researchers led by Gottlieb began experimenting with interrogation techniques and use of psychotropic drugs, much of which would now be classified as torture. After extensive research into mind control techniques, Gottlieb set out to establish a bigger, more ambitious project to discover the secrets of ‘brain warfare’, once and for all. In 1953, Gottlieb’s proposal was approved by Dulles, which was from then on known as MK Ultra : 99.Throughout the search for the secret behind mind control, many people from different backgrounds were recruited, including Dr James Hamilton, Dr Robert Hyde (p. 100) and Dr Louis Jolyon West (p. 88) who were all American psychiatrists. Hamilton worked at Stanford University, and he became the researcher behind Subprojects 2, 124 and 140. Subproject 2 examined how synergistic activity of drugs can eradicate consciousness completely, as well as ways to drug a person without their knowledge. Subproject 124 tested whether inhaling carbon monoxide gas would induce a trance, and Subproject 140 tested the psychological effects of thyroid hormones (p. 99). Hyde coordinated Subprojects 8, 10, 63 and 66, which studied the effects of psychotropic drugs, in particular LSD-25 and alcohol (p. 100). West was paid $20,800 by the CIA to test the effects of dissociative drugs (p. 88). As drugs were a key area of research, pharmacies and pharmacologists were also key allies. The American pharmaceutical company Eli Lilly was behind Subprojects 6 and 18, where the CIA paid $400,000 for bulk purchases of LSD, making Subproject 18 the most expensive subcontract . Dr Harris Isbell was an American pharmacologist who studied the effects of LSD, mescaline, psychotomimetic drugs (that cause delusions) and even worked on the pre-clinical development of new drugs (p. 95). Another recruit was Dr Carl Pfeiffer, an American physician and biochemist who studied depressant and hallucinogenic drugs (p. 97).Not everyone recruited was from traditional backgrounds. One of the most well-known figures was George Hunter White, who held the title of Federal Narcotics Agent and CIA Consultant under the pseudonym Morgan Hall. In temperament, White was vastly different from many of the CIA’s allies; he had a sadistic streak and was well-versed in the illegal underground. He gained visibility for exposing a Chinese-American opium ring, having been initiated into the inner circles and facing ‘death by fire’ should he betray them. At first impression, White was rather rough, being well acquainted with criminals, pimps and prostitutes, and having a taste for sadomasochism. Despite their vast differences, White and Gottlieb soon became close comrades. White became known as the person behind Operation Midnight Climax, also known as Subproject 35. As per Gottlieb’s instructions, White enlisted prostitutes to lure clients to their ‘safe houses’, where they were drugged without their knowledge so that CIA psychologists could study the effects of sex and drugs on the human psyche : 149–51.Another ally of the CIA, John Mulholland, was not a scientist at all but a magician. He was a student of Harry Houdini, an author of several books, a renowned illusionist and a skilled performer. One of his areas of mastery was the ‘psychology of deception’, making him a valuable ally to the CIA. Gottlieb enlisted him to write a manual on how to use magicians’ stage techniques for distraction and deception, intended for CIA officers to use in practice. This original project known as Subproject 4 was expanded into Subproject 19, until the final version was published: ‘The Official CIA Manual of Trickery and Deception’ : 88, 92.At the 1954 convention of the American Psychological Association, Gottlieb’s officers were drawn to a Canadian study by Dr Donald Olding Hebb at McGill University, testing the ‘effects of radical isolation upon intellectual function’. Hebb was dubbed the ‘father of neuropsychology’ for his innovative research that combined neuroscience and psychology. The well-known Hebbian theory of neural plasticity stated that connections between neurons become stronger and more sensitive when they are activated more frequently. In other words: ‘Cells that fire together, wire together’ . Like CaAfter further investigation into Dr Hebb’s research, CIA officers became even more interested in a colleague of Hebb: Donald Ewen Cameron. He adapted Hebb’s experiments using a greater degree of force, using drugs and hypnosis to induce a ‘clinical coma’, and he compared the subjects’ psychological breakdown to criminals breaking down under interrogation : ch. 8. In 1953, Cameron developed the theory of ‘psychic driving’ , where tThroughout these experiments, Cameron carefully observed patients’ responses, and identified six major classes of responses. A 50-year-old female patient, listening to the recorded statement ‘That’s what I can’t understand – that someone could strike at a little child’, showed an ‘immediately constructive response’, i.e. severe distress after 10 repetitions. A 28-year-old woman listening to a statement based on her childhood difficulties with her father showed a ‘partial block’; according to Cameron, the ‘intensity of feelings’ from the experiment led to a reduced ability to communicate with her therapist. The ‘rejection and later acceptance’ response was supposedly common among patients put under prolonged periods of sleep, where patients ‘reject’ the statement for up to 10 days before internalizing it. A young woman demonstrated the ‘rejection and escape response’ after listening to a statement on her supposed sexual desire for her father: she became angry and hostile towards the therapist, then quit therapy until she was later admitted to in-patient treatment, ‘deeply disturbed’. The ‘continued action’ response was seen in an anxiety patient, who, after listening to a ‘reassuring statement’ over a period of eight days, stated that she found reassurance in this statement when she felt afraid. Finally, the ‘development of defences’ as a response was seen after long periods of heteropsychic driving, including a woman who underwent a minimum of 25 hours of psychic driving, part of it under LSD-25. She later stated that she could not remember certain themes of the psychic driving sessions, such as giving up drinking, and instead had an urge to drink, which Cameron described as an ‘inversion of one of the heteropsychic driving themes’ .In another paper, Experimenters began using headphones on patients to play the statement for ‘greater impact’, and patients compared it to hearing a voice in their own head. Experimenters also created a filtered record of the original recording, with particular emphasis on treble notes, bass notes, low-volume sounds, high-volume sounds or an ‘echo-back into the communication’. When listening to the original recording, one patient showed ‘no response’, and afterwards stated she ‘had no feeling at all as [she] listened; [she] was thinking of something else’. In contrast, after listening to a ‘filtered’ record, she said: ‘I feel like screaming and putting on a tantrum. The voice seems to scream at me all the time. . . . I feel trapped. I feel I can’t talk to anyone.’ Cameron concluded that psychic driving was supposedly most effective during the last 10 minutes of the therapy session so the effects were not interrupted; he also considered the possibility of spending five minutes after the psychic driving asking the patient about his or her experience, which according to Cameron ‘probably tends to stabilize the implant’. He observed that the dynamic implant caused ‘mobilization of action tendencies’; the patient would become aware of the underlying issues expressed by the repeated statement which ‘facilitates problem identification by the patient and the therapist’. Cameron also noted that the effects of the dynamic implant were dependent on five factors: the number of repetitions, the ‘intensity of response’, the patient’s defence mechanisms, the patient’s own tolerance to stress, and ‘capacity for desensitization’, i.e. how effectively patients could desensitize themselves to the implant .In January 1957 , GottlieAfterwards, the ‘phase of rehabilitation’ would begin, in which the patient was closely monitored by a caregiver and, if schizophrenic symptoms returned, ‘electroshock is again intensified’. These experiments went on for many years. In another study, examining induced amnesia as a treatment for schizophrenia, Canadian Psychiatric Association Journal  theA paper in the following year  describeDr Cameron is widely known as a ‘CIA doctor’, but it is debatable to what extent his work was influenced by the CIA. Since his early research in the 1930s, Cameron had taken an interest in schizophrenia and its potential treatments; his 1934 paper on his study using extreme heat and cold aimed to better understand the differences between schizophrenic patients’ and control subjects’ physiological responses to external stimuli. When the CIA began funding Cameron’s experiments at McGill, he was supposedly unaware that the money came from the CIA. Cameron signed a contract in 1957 outlining the research he agreed to oversee:(1) The breaking down of ongoing patterns of the patient’s behavior by means of particularly intense electroshocks (depatterning). (2) The intensive repetition (16 hours a day for 6–7 days) of the prearranged verbal signal. (3) During the period of intensive repetition the patient is kept in partial sensory isolation. (4) Repression of the driving period is carried out by putting the patient, after the conclusion of the period, into continuous sleep for 7–10 days. : ch. 8This is essentially the same as the research he was already doing. According to Cameron’s published work, there was no noticeable change in direction of the experiments before and after the contract was signed.To illustrate this, let us compare two of Cameron’s papers: one published before and one after the grant. The first paper, titled ‘Psychic driving’, was published in 1956 and set out to measure the effects of the repeated playback of verbal cues. Some patients were given amobarbital, some were given LSD-25 and, with some patients, psychic driving took place during ‘prolonged sleep’ and sensory deprivation . The secDespite the claims that Cameron’s experiments were a legitimate medical treatment, these experiments had devastating impacts on patients and their families. In a Canadian Broadcasting Corporation (CBC) podcast, Allan Tanny described how his father Charles Tanny, a hardworking man with trigeminal neuralgia, was admitted to the Allan Memorial Institute and was never the same after he returned . In the Cameron’s experiments had devastating consequences for patients and their families. What began as hopeful treatment for severe mental illness strayed from legitimate medical treatment and became a form of medical torture likened to the Nuremberg Trials. Hence, how could a psychiatrist present at the Nuremberg trials, who condemned the entire German people for allowing such experiments to happen, become involved in such experiments? In reality, Cameron’s experiments began with the aim of treating schizophrenia, with no political or military purposes, and even after the CIA began funding the experiments, Cameron was kept mostly in the dark about where the money came from. There is no evidence showing Cameron wished to be part of any CIA project; it is more plausible that he was driven by sheer intellectual curiosity like most scientists. While modern medicine shows that these experiments have little scientific value, much of Cameron’s logic was sound: his experiments showed a clear research question, methods, results and interpretation. This does not excuse the lack of regard for patients’ welfare; ethics must always be at the forefront of research, something Cameron would have been aware of, having been present at the Nuremberg trials. However, many scientists, including colleagues of Cameron, have done ethically controversial studies. Instead of the false dichotomy of the ‘good’ scientists versus the ‘bad’ scientists, we must be aware that we are all capable of such atrocities if we allow our desire for answers to come before our first duty: to do no harm.


Socially assistive robots (SARs) are a promising tool to manage children’s pain and distress related to medical procedures, but current options lack autonomous adaptability. The aim of this study was to understand children’s and caregivers' perceptions surrounding the use of an artificial intelligence (AI)-enhanced SAR to provide personalized procedural support to children during intravenous insertion (IVI) to inform the design of such a system following a user-centric approach.This study presents a descriptive qualitative needs assessment of children and caregivers. Data were collected via semi-structured individual interviews and focus groups. Participants were recruited from two Canadian pediatric emergency departments (EDs) between April 2021 and January 2022.Eleven caregivers and 19 children completed 27 individual interviews and one focus group. Three main themes were identified: A. Experience in the clinical setting, B. Acceptance of and concerns surrounding SARs, and C. Features that support child engagement with SARs. Most participants expressed comfort with robot technology, however, concerns were raised about sharing personal information, photographing/videotaping, and the possibility of technical failure. Suggestions for feature enhancements included increasing movement to engage a child’s attention and tailoring language to developmental age. To enhance the overall ED experience, participants also identified a role for the SAR in the waiting room.Artificial intelligence-enhanced SARs were perceived by children and caregivers as a promising tool for distraction during IVIs and to enhance the overall ED experience. Insights collected will be used to inform the design of an AI-enhanced SAR. Children frequently experience pain and distress in the context of needle-related medical procedures, including vaccine administration and intravenous insertion (IVI). Without intervention, these experiences can lead to both short-term  and long-term  adverse consequences –3. Both SAR encompasses robots designed to assist humans via interactive communication Fig.  9]. SAR. SAR9]. The overall project objective is to develop an AI-enhanced SAR to enable autonomous action selection for a robot’s behaviors, thereby offering personalized, adaptive procedural support to children during IVI. To achieve this, the humanoid Nao robot (SoftBank Robotics) will serve as the physical form . This platform has been widely used in child-robot interaction studies ,12,13,16While prior studies demonstrate clear potential for a SAR to reduce procedure-related pain and distress in children, existing systems are all significantly limited by their preprogramed nature – utilizing entirely scripted behavior or requiring real-time human input for behavior selection. This restricts their responsiveness and flexibility in the unpredictable pediatric clinical setting . ArtificWe conducted a descriptive co-design study involving target end-users . ParticiIntegration of novel technology into the clinical context requires careful consideration of related ethical issues and a moral commitment to patient well-being. The use of AI methodologies for SARs requires specific ethical consideration, given the associated unique challenges. To address this, we employed a vertically integrated ethics perspective, meaning that ethical inquiry was undertaken at the outset and prioritized throughout all phases of the study. Practically, this included incorporation of co-design questions related to the notions of ethics in SAR design. For example, we inquired about trustworthiness and other perceptions of the robot. Additionally, we recognize that notions of trust and privacy may differ among stakeholders – children, caregivers, and healthcare providers (HCPs).Participants were recruited using a purposive sampling method from two tertiary care Canadian pediatric hospitals between April 2021 and January 2022. The Hospital for Sick Children  and Stollery Children’s Hospital  saw 80,000 and 60,000 patients, respectively in 2021. Neither of these institutions uses SARs in their ED, however, the Nao robot (without AI enhancement) has been used for research purposes at both institutions. Eligible children included 5–11-year-olds who presented to the pediatric ED and received an IVI. This age group was selected because they report higher levels of pain and distress during invasive procedures, can reliably self-report pain, and, developmentally, are most likely to benefit from immersive distraction tools –27. Elig1 for interview guide). Prompts were incorporated as needed to clarify and encourage expansion of responses.Caregivers  completed an online questionnaire via REDCap collecting information on demographics and previous technological experience prior to the start of the interview or focus group. Interviews, either individual or focus group, were conducted virtually via Zoom Healthcare by two female team members ; SH is a medical student and FN is a clinical research project coordinator, both are trained in qualitative interviewing and were supervised by senior team member (JS) with expertise in qualitative research and co-design. Interviewers did not have a clinical or personal relationship with any participants. Interview questions were developed based on the team’s expertise in conducting previous needs assessments and included questions to comprehend (1) children’s and caregivers’ experience during IVI, (2) thoughts about AI technology, including ethics, and (3) ideal features and functionality of an AI-enhanced robot  years. All caregivers (11/11) were mothers, with 7/11 (63.6%) aged 40-49 years (See Tables .2 years.The insights collected from children and caregivers were categorized into three major themes: (1) experience in the clinical setting, (2) acceptance and concerns surrounding SAR, and 3) SAR features to support child engagement .I was scared when I was in the emergency room because it had a poster and it said, “Is your child getting a needle” and then I told my mom, “Am I getting a needle, mom?” and then she said, “Probably.” I had butterflies in my tummy, I was nervous” - “Nearly all children mentioned a fear or dislike of needles. Both children and caregivers emphasized the importance of addressing child anxiety and fear associated with needles, regardless of the additional time this may take. For some, these anxious feelings begin before they arrive at the ED.Children shared experiences of how HCPs helped reduce their procedure-related anxiety and played an important role in their ED experience.I felt kind of scared, because I didn't know if it was going to hurt or not. And then she [nurse] explained how all of it would work, and after that, it got more comfortable.” - “Children also shared how previous negative experiences with IVIs can impact their perception of future IVI encounters. This was also echoed by caregivers who described their children as “traumatized” by IVI.I had this one really bad experience, and then I'm scarred for life, so I don't like needles.” - “Caregivers also reported that managing their child’s distress and anxiety can be a stressful experience for them.I felt really nervous but most of them, doctors or nurses, were very nice and they comforted me, and they helped me out. Then I felt really okay.” - “Common tools used to manage pain and distress include pharmacological tools , non-pharmacological tools , and caregiver support techniques . Digital tools  were most cited as helpful; caregivers reported using these to play games, watch shows , or listen to music – all with the aim of distraction. Children and caregivers also described non-digital tools  as providing comfort. One limitation of digital tools was the lack of or often unreliable internet access and unavailability of charging stations.Several children named their caregivers as important in their pain and distress management.Whenever I look at Mama or talk to her, it just feels [like] a little poke. But when I don't talk to Mama or look at her, then it hurts.” - “Caregivers also reported advocating for their children, as they often know what tools are most effective to manage their child’s pain and distress. Notably, some caregivers felt it was difficult to meet the multiple needs of their child during the procedure. Caregivers appreciated HCPs knowledge of pain management options. Their (HCP) presence and behavior when positively perceived by children can also help manage pain and distress.If I was doing bloodwork and the robot was there with me, I would feel calm and relaxed and wouldn't be worried about it.” - “Children interviewed generally perceived robots as helpful. They had a good understanding of the general appearance of an archetypal robot, “made of metal,” “square head, square body.” Children viewed the SAR as a trusted tool and explained that they would communicate with it as they would communicate with their caregivers. Children and caregivers expressed interest and excitement about interacting with a SAR in the pediatric ED. Caregivers envisioned the SAR as a tool to distract their children and reduce anxiety during the IVI. Caregivers understood that children would likely perceive the SAR positively because of their young age and innocence. Among caregivers, the sense of trust was noted to be with the institution and/or people involved in developing the SAR rather than the instrument itself.I would probably be very cautious but I’d also assume, because I trust the doctors and nurses that I’m putting the care of my child into, [that] they wouldn't be bringing something in to the ER that would be harmful – So it would be more the trust of the people that are using these tools and these robots.” - “With somebody’s cry, it might sound more like laughter, or something like that. Somebody’s emotional face could be misinterpreted. Also, some people – I’m just going off of personal experience – even when I’m hurting really bad, I will laugh because I feel uncomfortable.” - “While all participants largely supported the idea of having a SAR in the ED, caregivers expressed some concerns associated with the adaptability of the SAR as well as privacy concerns related to photographing/video recording by the SAR. Caregivers thought the SAR might have difficulty interpreting a child’s social cues or facial expressions appropriately and the nuance required to understand a complex social setting, such as the ED. Caregivers also highlighted that some children, particularly younger children, may be overwhelmed by a SAR and it may therefore need to adapt its behaviors for each child.Some caregivers expressed concern about sharing personal information and protecting their children’s privacy, in the context of SARs. They highlighted potentially inappropriate times for video recording . Caregivers also emphasized the importance of having a consent process with proper explanation to them and their children prior to SAR use. Some caregivers did not want the interaction with the SAR and their child to be recorded at all.Obviously, things are recorded for perfecting purposes, but that for me is something that freaks me out…but I know that it is for beneficial purposes. Maybe a confidentiality agreement. Signing a form stating that it’s [video footage] not going to be published anywhere, only for educational purposes, could benefit people in the future.” - “Children shared concerns about the technical failure of the SAR and its implications, such as losing control. There was one child who preferred interacting with nurses and doctors instead of interacting with robots.“I would prefer nurses. This is not anything bad about the robot. I just feel like it’s better…Some kids are scared of them and they do not know how to react to them. Maybe you want human beings instead of robots….I would say I trust more in humans than robots because robots are not going to be like, “I”m sorry.’ They aren't going to comfort you” .Children and caregivers perceived the role of the SAR differently; caregivers emphasized the role of the SAR during IVI, while children emphasized its importance before and after IVI.It depends on the age of the child. For my daughter, I think her age group would be okay for it to just come in at the same time as the procedure is being done. But for a younger [child], I think she would need to get comfortable with it first.” - “Neither children nor caregivers suggested a set amount of time for the SAR to interact with patients, rather they suggested it stay if it was beneficial. Some caregivers stated that younger children might require more time with the SAR to get comfortable prior to IVI beginning. New roles were suggested for the SAR outside of IVI entirely, including having a SAR in the waiting room to distract children.If he had said to the robot, “what’s going to happen to me?,’ the robot probably would have [said], “this is exactly what’s going to happen step by step.’ Give him a bit of a heads-up. Maybe the robot and the kid made a plan together about what they’re going to do during the IV procedure.” - “Caregivers saw the primary function of the SAR as distraction during IVI. Suggested behaviors during IVI included tricks, jokes, playing music, singing, and dancing. It was suggested that SARs have a list of activities to pick from to better engage with children. Caregivers suggested that conversations with the SAR before IVI center around explaining the procedure and creating a distraction plan with the child about what should occur during IVI. Conversations after the IVI were suggested to cover what to expect next.I think we should be talking. He can be helping me out [with]what I'm gonna be doing today. Like if I'm going for an ultrasound, what’s gonna be happening with me? What’s going on? I'm gonna have to stay there. To tell me what’s gonna happen and he'll be there for support.” - “you did such a good job or like you did really well” , and “you’re very brave” . Children also suggested being rewarded after IVI; the SAR could give them a prize, gift, or sticker. The before and after periods may be important to children because some notice that when the HCP enters the room, the focus can shift to the medical procedure and the SAR may then be limited in the actions it can take.From the child’s perspective, the SAR was viewed as a friend that would complete the procedure with them. Children emphasized the role of the SAR before and after IVI. Before, children wanted the SAR to talk to them about their procedure, get to know them, and play games. After the IVI, children thought the SAR should stay in the room and continue talking to them, while also providing positive reinforcement. Examples of supportive phrases include: “The robot wanted to come and play with me. But when the doctor’s coming he [the SAR] can't play with me, “cause if the doctors give me the IV and he [the SAR] wants to walk, I can't because I’m hooked up to the IV…the doctor said that I have to stay in bed.” - “All participants were played a 50 s video of a Nao robot (without AI-enhancement) helping a child through a needle procedure (video can be seen here). Participant responses to the video outlined their opinions on which features would make the SAR friendly, funny, smart, or scary.This voice is calm and soothing. It was moving. It wasn't making noise, it wasn't beeping. Smooth lines and the colours. It was talking to her like it knew what she was doing at the time and was talking her through it. [It] introduced itself and used her name.” - “To characterize a friendly SAR, the suggested features included both physical design and behaviors. Children listed having a “nice” voice, smiling, and bright colors for the external appearance of the SAR. Behaviorally, they suggested introducing oneself, knowing the child’s first name, offering help, and giving high-fives.Dressing [in] funny clothing or make it wear a hat?” - “Participants explained that telling jokes, having a funny name, acting silly, dancing, and having funny voices are features that would make a robot funny. Children also mentioned costumes as another method to make the SAR appear funny.When asked about what makes a robot scary, participants identified having red eyes, being large in size, dark in color, having a deep voice, and sudden movements. One child perceived tools as scary.He knew what it [IVI] was like – it’s wet for a bit, it’s gonna feel tight for just a second, but then as soon she takes it off, it’s gonna go away.’ He felt smart, like he knew what was gonna happen.” - “Most children thought the SAR was smart and some recognized that the SAR was programed with designed behaviors. Participants thought a smart SAR should be knowledgeable about a variety of topics and be able to converse with children about these, appropriately recognize and respond to needs of the child, and know the IVI procedure well to explain and respond to a child about it.“It didn't really show a lot of feelings. Just kind of a straight voice… it would be fun if they could change his voice, [like] if he was excited” .Participants identified areas where the SAR features could be enhanced to meet the needs of children undergoing IVI procedure, either physically or behaviorally. Several children suggested feature enhancement to the color of the robot, including potential for different colors or letting a child pick a color of their choice. Voice enhancements were also suggested, including clarity, and making the SAR’s voice more animated. Participants also preferred the SAR to stand instead of sit and suggested adding more movement to capture a child’s attention."Definitely movement, in order to keep a kid’s attention, I think it needs to be moving and making noises" - .Caregivers suggested tailoring language and distraction activities to match the child’s developmental level to maximize effectiveness."What’s age appropriate for a four-year-old is not going to be a good distractor for a 12-year-old. Is it able to say something helpful age appropriate for that child and their interests?" - .They also recommended the robot have the ability to adapt to the child’s needs and communicate these, as they may not be perceived during the IVI.This study highlights the perspectives of children and caregivers surrounding the use of AI-enhanced SARs in pediatric healthcare. Participants shared insights on their previous experiences in pediatric ED settings, as well as their thoughts on the use of AI-enhanced SARs within these spaces, specifically indicating perceived benefits, concerns, and desired features. Several implications were identified for the design and development of AI-enhanced SARs within pediatric healthcare settings, which are applicable to this project as well as other similar technologies in related applications.Two previous studies completed co-design with children to inform the design and development of their SAR ,23. OverThe experiences and perspectives shared by participants reinforce the findings of published evidence which indicate the importance of supporting children through IVI –32. ChilDuring IVI, caregivers and children emphasized the importance of providing a wide variety of distraction options and anticipated positive value in providing a repertoire of choice given how children of varying ages, backgrounds, and personalities likely prefer different distraction techniques . FurtherFollowing IVI, children expressed a wish for positive reinforcement by the SAR. Post-procedure de-briefing and re-framing is supported by a wealth of evidence as critical in positively framing a child’s immediate perception and long-term memory of procedure-related pain and distress . After IPrevious research evaluating the implementation of social robots in healthcare settings found personalization as an important enabler of use . ChildreAlthough most caregivers understood the reasoning for the SAR to undertake photographing/video recording, many expressed concern for their child’s privacy. As such, the implementation of the SAR in a pediatric ED setting must include a thorough explanation of how and why photo/video recordings are being collected and what privacy precautions will be in place. Collected visual and auditory input data will help the system understand its environment and interact accordingly but will never be stored; this will be made clear to all participants during the consent process. Conversely, certain carry-over effects were endorsed by caregivers who indicated that if they trusted the healthcare team, they would be more likely to trust the SAR. This underscores the importance of co-design in the creation and implementation of new technologies within healthcare settings. Other barriers exist in the implementation of a SAR, these include financial constraints, flexibility of SAR in a resource-strained environment, and uptake by HCP. These challenges will be thoroughly examined in a future publication, which examines the viewpoints of healthcare providers.Finally, child participants implicated technical failure as a concern with using SARs. Technical barriers, such as system lag, interruption, or failure, were also identified as limitations to the implementation of the SARs in healthcare settings ,42. To mVirtual interviews may have limited the ability of the interviewer to detect and interpret subtle body language and may potentially impede interactions between focus group participants. The sample is exclusively comprised of English-speaking families that presented to large Canadian urban EDs; as such, their perspectives may differ from those of families who were not comfortable attending in-person clinical care during the COVID-19 pandemic and/or spoke other languages, thereby potentially limiting generalizability. Finally, the study findings describe the design recommendations and perceptions of some end-users, these may not align with actual behaviors and responses of a SAR implemented in a real-world scenario.An initial prototype of the SAR system is currently being developed, with the system’s behaviors based on outputs of this co-design work. A parallel co-design study was undertaken to characterize the perspectives of healthcare practitioners, which is also being used to inform system design . FollowiOverall, AI-enhanced SARs were perceived by children and caregivers as a promising tool to distract children. Insights collected will be used to inform the ethical and emotionally safe design of an AI-enhanced SAR. Next steps include development and usability testing of the SAR, subsequent evaluation in the pediatric ED via a randomized controlled trial, and clinical implementation. Those wishing to characterize the needs of children and caregivers within similar healthcare scenarios are invited to apply a similar approach.Nishat et al. supplementary material


I welcome with great enthusiasm Meling and Scheidegger's (dynamic co-emergence (henceforth “DCE”). A first worry is that DCE applies to the relationship between autonomous wholes and their parts , are phenomenal parts , rather than local neural activity. Additionally, regarding the latter , the corresponding whole is more plausibly a neural whole, i.e., a global brain activity such as interhemispheric synchronic gamma oscillations, rather than the experience itself.A concept that figures prominently in M&S's account of the relationship between brain activity and the psychedelic experience is determination. However, they are related but distinct notions. While DCE is meant to describe the reciprocal, constitutive relationship between parts and wholes in autonomous systems  is that its components are produced by the network of mutually enabling processes that constitute the system, and where global topological constraints play a key role , it seems less plausible to hold that a neuron emerges from or is constitutively specified by the neural system it belongs to. Intuitively, a neuron remains being a neuron even if it were hypothetically isolated before being incorporated into, or after being separated from, a larger neural system, as long as it can remain potentially functional and structurally intact.Third, I worry that the notion of DCE is currently too obscure to incentivize further psychedelic research from an enactive perspective. In contrast to circular causality, it is not obvious what DCE really amounts to. Thompson writes that “in an autonomous system… parts do not exist in advance, prior to the whole, as independent entities… part and whole co-emerge and mutually specify each other” (Thompson, Fourth, in order to advance an enactive psychedelic science, circular causality should be formalized to make it a scientifically useful tool. To the best of my knowledge, the mathematical, dynamical approaches to circular causality that are most close to the enactive approach are the ones from Haken  and KelsFifth, as a relation between parts/local and wholes/global activity, in contrast to what is suggested by M&S, circular causality would be more straightforwardly involved in the relationship between the psychedelic molecule and brain activity, rather than between brain activity and the psychedelic experience. In the absence of sound reasons to consider the relationship between brain activity and conscious experiences as mereological, alternative ways to understand their causal relation should be looked for.affective experience under psychedelics and its causal influence on the associated emotional-somatic changes. Experiencing an emotional breakthrough in the psychedelic session has also been validated as a strong mediator of subsequent mental health benefits (Roseman et al., organismic regulation cycle, and therefore, psychedelic-induced changes in the subject's primordial feeling of being alive or continuous organismic sentience (Cea and Martínez-Pernía, Finally, instead of focusing mostly on “psychedelic experiential cognitive acts” (Meling and Scheidegger, The author confirms being the sole contributor of this work and has approved it for publication.


The World Health Organisation defines paediatric palliative care (PPC) as caring for the child’s body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers.A descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children’s wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children’s parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis.Twenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child’s diagnosis, but they were able to correctly describe their child’s condition using their own terms. Most parents felt involved in their child’s management and were satisfied with the care provided. Parents were psychologically affected by their child’s situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses’ understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder.There is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.The online version contains supplementary material available at 10.1186/s12904-023-01177-6. According to the World Health Organisation paediatric palliative care (PPC), involves the child’s body, mind, and spirit, and giving support to the family. It is important that the care begins when illness is diagnosed and continues regardless of whether a child also receives curative treatment. Health care providers must attend to a child’s physical, psychological, and social distress. To achieve this often requires a broad multidisciplinary approach that includes the family and available community resources. Despite the challenges, children can receive good PPC even if resources are limited –4.In 2014, the World Health Assembly (WHA 17.19) passed a resolution on “Strengthening Palliative Care for Children”, emphasizing that the accessibility of palliative care for children is an ethical responsibility of health systems . HoweverWe aimed to describe the characteristics of children with palliative care needs who were admitted to the paediatric ward of Port Moresby General Hospital; to assess their parents’ perspectives of palliative care; and to assess health care workers’ ability to provide palliative care to a child with such needs.This was a descriptive qualitative study, carried out in the paediatric wards of the Port Moresby General Hospital from March to July 2022. As the only tertiary-level hospital in PNG, PMGH is where children from all other provinces are referred when further specialist management is needed; this includes the investigation and management of many life limiting conditions for which children may at some stage have palliative care needs.Children who were included in the study were drawn from four categories of life-threatening conditions Table .Twenty children and their parents were included in the study. Diagnoses, clinical characteristics, palliative care needs, and interventions were recorded from their medical records and interviews.Tok Pisin (the lingua franca of PNG) or a local language (PNG has over 400 languages).Parents and guardians were interviewed by the first author (VW), using a questionnaire with semi-structured open questions (online Appendix). The participant parents were selected based on their child’s illness, and their willingness to be interviewed, in a convenience sample. No parents declined to be interviewed, although sometimes, guardians or parents were not in bed, so the interviewer would move on to other patients. The interviewer would sit with the parents or guardians and explain the aims of the interviews and they were mostly curious and willing to participate. The interviews were recorded on a recording application on an Android phone, and transcribed verbatim, and translated if in A focus group discussion was carried out with 10 health care workers (nurses) who were involved in providing palliative care to children, and willing to be interviewed. The focus group discussion was video recorded.The interviewer was a female, a paediatric registrar  at the time of the study, studying for a post-graduate masters specialist qualification in Child Health. She is now a paediatrician. Her relationship with the parent participants and the health care workers was based on her role as a paediatric registrar. Although not having received formal training in qualitative research, the interviewer had many years experienced in caring for children with life-limiting illnesses.The interviews with parents or guardians generally lasted 45–60 min. Parent or guardian interviews and the health care workers focus-group discussion were transcribed. Comments not related to the study topic were omitted. The responses were thematically arranged, the content analysed, and responses that represented the range of views on a particular theme were grouped and noted. Thematic analysis as published by Braun and Clarke  was usedOf the 20 children, 11 were male. Ages were < 1 year 3 (15%), 1–5 years 6 (30%), 6–10 years 4 (20%), 11–15 years 6 (30%), and 16–20 years 1 (5%). Thirteen came from Port Moresby and 7 had been referred from outer provinces that required air travel.Nine children had cancer . Eleven had non-cancer diagnoses .Most children were in category 1 of life-threatening diagnoses: an illness where curative treatment may be feasible but may fail, including cancer. 20% had category 2, an illness that may involve long phases of treatment aimed at prolonging life, but premature death is still possible, such as HIV and bronchiectasis. 10% and 15% were categories 3 and 4 respectively: progressive illnesses with no curative treatment and illnesses like cerebral palsy, conditions that may deteriorate unpredictably, but are not generally progressive.The main significant symptoms experienced by these patients at the time of interviews included pain (9), dyspnoea or respiratory depression (9), visual loss (5), bleeding and anaemia (5), feeding difficulties (3), severe motor dysfunction and mobility impairment (3), and fever (2). Treatments provided that have a palliative role were analgesics , oxygen therapy, physiotherapy, nasogastric feeding, and blood transfusions.The caregivers interviewed included 8 fathers, 7 mothers, 3 grandmothers, and one each sister, auntie, and uncle. The themes explored in the interviews included: the parents understanding of their child’s illness, the parents’ perception of the child’s symptoms, the emotional burden the child’s illness had on the family, and to what extent the parents felt supported by health care staff.Three parents knew their child’s diagnosis, however 16 could describe it in their own descriptive terms but did not know the name, and 1 was unsure.“Heart disease problem, em gat hol lo heart” “Problem lo lung, pressure high lo lungs blo em so wokim em sotwin” “Mi no clear lo name blo sik but em fungus” Most parents/guardians were able to understand their child’s illness even without correctly naming the diagnosis and with that understanding, most were able to know the respective palliative care needs of their child and help accordingly at home or in the hospital.Parents or guardian had perceptions of the child’s palliative care needs and described it in their own descriptive language Table :Parents and guardians expressed strong feelings about their child’s predicament Table : 57% wer(They put him on oxygen and that is why I am sitting here. I am in the dark)“Ol puttim oxygen tasol na me sindaun stap. Mi stap lo tutak yet” “Lo ward rounds, planti taim ol dokta sa toktok lo ol yet. Ol no sa explain gut lo sik or marasin ol givim lo pikinini. Ol sa ting, mipla no sa understandim ol sapos ol explain lo mipla, ol ba tokim antap antap tasol” Most parents (81%) were given the chance to talk about their child’s plan of management while 18% of parents were not happy, stating that they are still in the dark and that doctors talk to themselves most times during wards rounds and do not explain their child’s management plans in detail.(He is no longer in pain)“Em no pilim pain more” Nurses always up to date with meds, hot water, milk, they are on time“Mi ting ol gim marasin ba orait liklik” Not really goodI’m still in darkness“Mipla go kam, go kam, mi lukluk tasol. Em orait or?” 63% of parents and guardians were satisfied regarding their child’s management praising the nursing team for being up to date with their child’s medication and other needs in the ward. 27% were not satisfied, one parent stating that she is still in the dark in terms of her child’s management.Parents were asked if the medical team have discussed the possibility of a poor outcome for their child. This had not occurred to the parents’ recollection in two-thirds. Most parents were not told of the possibility of having a poor outcome for their child, that is, either having a “poor quality of life” or “the possibility of death”.Many parents showed faith, religious and otherwise: 25% of parents believed that God would heal their child and 20% believed that the medicines would heal their child. Another 20% were unsure and anxious, while the same percentage of parents (20%) were just angry. 10% of parents and guardians accepted the poor prognosis.We explored nurses understanding of palliative care, their perceived ability to identify a child who needs palliative care, and their skills and resources for addressing palliative care needs for a sick child. The 10 nurses that were involved in the focus-group interview were very experienced, an average of 16 years of experience, however none had any specific training in palliative care.Care of disabled, long-term patientsSupportive care of patients with poor prognosis, to prolong life spanCare of patient with no futurePoor prognosis patients, provide care to make them happy; we attend to child so parents must be happy.Patients with no future, will die anytime; we provide care and spiritual needs and physical needs as well; if they are in pain, we give pain relief. We provide support to keep them going as long as they are with us in the ward.Main focus and aim is to ensure parents are happy; and prepared to accept what is expected of patient.These nursing officers were asked to explain what palliative care is in their understanding, the answers focused more on the care of chronically ill children with a poor prognosis, and optimising quality of life or “happiness” for parents and families.Patient will get treatment and stay, then diePatient will live for some years and dieWe treat them to the limit and after that, send home to stay and wait for their deathWe as nurses must think of patient as a whole; their physical, emotional, social and spiritual wellbeing. Help them physically e.g., supportive treatment, and emotionally we must help them and that helps their mental wellbeing as well as their spiritual.We think ‘This patient won’t make it’ in the next week or next month; we might not keep patient for long. We address patient’s needs pain relief; spiritual counselling; help parents at least accept what the child is going through and the fact that child may not make it in the end.The staff expressed that after learning that a child is now requiring palliative care the focus is more on dying (80%), while others expressed the need to focus on the provision of holistic care for the child in the time they have left (20%).From experience, the child cries. In bigger children, they can communicate so they call out. They are restless and do not sleep.I’m feeling pain.From experience, children who can talk, they express their pain by crying and by saying, “I normally assess them; and give first line analgesic like Panadol and if it doesn’t help then we get a doctor to order something stronger to relieve pain so parents will be happy.We get doctors to put on pain medicine which is stronger than what is written on drug sheet, when pain gets severe.If the parents come and demand that we give When to give pethidine; I assess pain. Some chronic patients have been on pain killers for so long, they are kind of addicted, sometimes they are pretending so you must assess. If you reassure them and they quieten down then its psychological; sometimes parents get frustrated, so they demand, but don’t listen to parents; make your own assessment.Doctors may commence patients, especially cancer patients on pethidine, morphine or codeine; so, when its regular, 6-hourly, we follow and give; if in between they are still in pain then we get doctors to order alternative pain killers. We give medicine at scheduled times but most times, they need spiritual counsellors to be around.Nurses felt they had the ability to identify a child who needs palliative care and how to address these needs. Most of the staff assessed the severity of pain in children based on their experiences, rather than on any formal teaching.Pain can also be managed by non-pharmacological therapy, some listed by the health care workers include outings, video games, music video, music, watching TV, herbal treatment, lollies and spiritual counsellor or a chaplain.Apart from pain, other symptoms that can be relieved by appropriate palliative care were listed as: urinary retention, excessive sweating, fever, itchiness, generalised body weakness, not walking or sitting, bleeding, pus discharge, swelling, depression and fast breathing.You will observe them sitting down and thinking a lot; walk in and out without any reason and stand out and gaze around“Children themselves cannot talk; but parents are confused, worried.As a Christian nurse, if you see a patient and your spirit is telling you to pray for them, you will have the feeling that the patient needs prayer.Can you read me this scripture?’ so spiritual part of treatment is very helpful, especially in older children.From my experience, they ask, ‘Nurses felt that many of the children under palliative care may need spiritual help and this could be identified by observation, or older children may ask to read a Bible verse, or through their parents.(My father/mother died)“If a child is not happy, they will cry; if husband and wife, they will argue a lot, maybe they need money, so we need to help them financially Sometimes they are (parents) fed up of just being in the ward waiting for treatment so they start giving excuses, e.g., “mama/papa blo me die.” Puttim marasin lo hap!”(Put my medicines there!)“They ignore us when we go to give treatment. They give their back to us. They will say, “Yupla sutim me planti taim.” (You pricked me too many times). It’s hard to tell them, “You are sick, you should let us help you.” So, I leave the medicines and go back to them later when they are ready.They refuse when we try to cannulate, “Nurses expressed an ability to identify a child who needs psychosocial help, again through their experience rather than formal teaching.oh, friend blo me!”. Especially, chronic patients, they know nurses and become friendly with whoever they’re comfortable with.”“I try to play with them and make them forget about their pain. You must first be friendly with them and then they will accept you. If you are harsh on them, you will not get it done. At least, for a few minutes, find time to sit and talk with them. If you share something with them then he or she becomes my friend, when I’m on duty, they say: “To help children with psychosocial needs, the staff identified two interventions, and that is to involve the psychiatric team and also individually, try to make friends with the child in order to gain their trust.As general nurses, we give medicine and other nursing care, but we don’t know how they think and feel.In a stressful workplace, it is a need.In oncology, we have patients that stay for a very long time in the ward. We need to talk to them day by day, encouraging them. We need a Palliative care ward and have our staff trained so that we know what we are doing.At the moment, we are caring for patients through our experiences or pre-training days. We are doing our best, but we need to train our nursesMost nurses (84%) agreed that there is a need for a specialist paediatric palliative care team:In this study we explored the palliative care needs of a group of children with life-limiting illnesses in Papua New Guinea, the perceptions of their parents, and among a group of experienced nurses the understanding and perceived skills of providing palliative care. PNG is a traditional and diverse Melanesian society, and most reports of the concepts of palliative care have come from western and high-income countries in Europe, North America, or Australia, with some from Africa, , 9 but nThe perceptions of parents in this study reflect traditional thinking, the strong influence of religion in PNG society, an acknowledgement and acceptance of the limited resources in health and medicine, and the universal human feelings of parents and health care workers to do the best they can for their children and those they care for.The diagnosis of children with palliative care needs were varied. Some had cancer, but common also were other chronic progressive or disabling conditions. Most diagnoses were grouped into Category 1 of life-threatening illness (55%), where curative treatment may be feasible but may fail. Category 2 made up 20%, Category 3 10% and Category 4 15%. The utility of such categorisation of life-threatening illness is questionable, especially in resource limited settings like PNG where treatment options and prognoses for complex conditions are not the same as in high-income settings.There is a need for a more organised approach to palliative care in PNG, and to include it as part of an overall approach to improving the quality of paediatric care. Educating and training of health care workers is essential; none of the nurses involved in this study had received any formal training in palliative care and their practice was based largely on experience. More junior nurses with less experience are likely to have less capacity to provide palliative care. Education would help orientate health care workers to the broader needs of patients with palliative care, not just terminal or end of life care. It would also convey the knowledge that not all palliative care services need be hospital-based, that some families would want to care for their child at home, and that there are ways to achieve this even in less resourced settings, given that it is a human right.The most feasible and useful type of education on PPC may be case discussions. The nurses in this study showed a willingness to discuss their experiences and feelings, and case discussions can be the basis for shared learning. This could include asking health care workers to reflect on the care they were able to provide, and to give education on analgesia and other palliative interventions.Palliative care involves a multidisciplinary team of nurses, doctors, social workers, psychologist, physiotherapist, non-governmental organisations, and parents and families as partners. We only included nurses and parents in this study, but broadening the scope of further research into palliative care to involve resident doctors and other health professionals would be important.By the clock, By the mouth, By the ladder [Pain management is hampered in PNG, as in many resource-limited settings, by lack of training in analgesia, a lack of appropriate child-friendly medications, and often by misconceptions of the dangers of opioids in patients with life-limiting illnesses. WHO recommends the use of the Analgesic Ladder and an approach that has three main principles: e ladder . Using te ladder –13.Hospital based palliative care programs are feasible in LMICs . A studyRaising awareness and sensitisation on palliative care.Education and training.Implementing a paediatric palliative care service.Collecting data to provide a detailed picture of the palliative care needs of children and families.Palliative care fits within the Child and Adolescent Health Redesign approach of the World Health Organization, and the PNG Child and Adolescent Health Policy and Plan 2021–2030, which emphasise holistic care for children and adolescents of all ages, and optimisation of quality of life , 16.The study had a small sample size, the questions are inherently subjective, and we did not use software to code the data. Rather we used manual analysis, thought and discussion by the primary author, and amongst all co-authors.Palliative care can be integrated into an overall approach to improving quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions, it can sit aside attempts at curative treatment, and can be successfully implemented with the limited resources found in many LMICs. Palliative care requires training and education, and better provision of basic drugs for symptom control. The nurses involved in this study had learned many aspects of palliative care from experience of working with such children, but a more systematic approach is needed.Below is the link to the electronic supplementary material.Supplementary Material 1Supplementary Material 2


Getting ‘stuck’, literally and figuratively, is a common experience for autistic people. Literally ‘stuck’ means exhibiting limited response initiation due to immobility with tense muscles and inability to move. Figuratively ‘stuck’ means loneliness, passivity or captivity in activities that do not offer long-term satisfaction. To further conceptualize this complex phenomenon of limited response initiation in autistic individuals, we performed qualitative interviews and focus groups with autistic people and their family members, followed by brainstorm sessions and a Delphi study with input from a larger panel of experts from multiple backgrounds. We aimed to co-create the outline of an integrative approach to support autistic people in moving away from this ‘stuck state’ to more flexible, limber ‘supple states’ in order to live freer, more meaningful, satisfying and peaceful lives. Over time, in interaction with all participants, our shared insight grew. Based on this, we here stipulate a conceptual framework, in which the described ‘stuck state’ at the micro-level of the muscles/behavior of one individual, probably is caused by feeling/being ‘stuck’ or ‘cramped’ at several overarching  levels. For instance, stuck in relationships with unhealthy dynamics, stuck at home creating short-term calm, trance-like states , stuck at an educational level that might fit the individuals’ current social–emotional state rather than their potential cognitive level, stuck in a job that pays the bills but does not feel meaningful, nor contributes to a satisfying life with opportunities for personal development. Stuck in a mental/public health care system where ever ongoing changes in policies hinder sustained support to suit care-needs. Stuck in a regulated societal system making it likely to repeatedly get stuck. Is this phenomenon specific to autism? Formally we have only conducted interviews with this population, but in another smaller, related project we also spoke to people from the general population with careers that are considered successful in the general society. These people actually voiced similar experiences. Therefore, we hypothesize that this numbing state of being or feeling ‘stuck’ may be a prevalent phenomenon that needs to be addressed. In this article, we discuss several types of interventive approaches , prevention as well as intervention programs, directed at different primary stakeholders, that can complement and enrich each other in an integrative policy, that leads to tailor-made, personalized trajectories of interdisciplinary support to enable people to live satisfying, meaningful, dignified and peaceful lives. Getting ‘stuck’, literally and figuratively, is a common experience for many autistic individuals*. With literally ‘stuck’ we mean immobile with cramped, tense muscles, a limited ability to move or initiate a response, in the most severe cases catatonia . With fiThis ‘state of stuckness’ was previously also referred to as ‘autistic inertia’ . InvestiIn the Methods and results sections of this paper, we will introduce and subsequently present the findings of both projects that led to a conceptual outline of an integrative approach, i.e., an approach in which a customized mix of guidance and therapy is made—and decided upon in equally shared decision making—over the life course and at intersections between life domains, existing of an integration of complementary components. This conceptual outline and concrete suggestions regarding components from existing methods/services will be presented in the Discussion.The ultimate aim of the integrative approach is to enhance more flexible, limber ‘supple states’ in order to create freer, more meaningful, satisfying, dignified and peaceful lives.* throughout this article, we will use the terms autistic people, people with autism, or autism spectrum disorder in an interchanging way, as we hope to attune to the needs and desires of all involved and do not wish to insult anyone with the use of our wordings.https://www.autisme.nl/over-autisme/onderzoek-naar-autisme/academische-werkplaats-autisme-awa/). The AWA was founded in 2013 by Prof. dr. Hilde Geurts and Dr. Kirstin Greaves-Lord. The AWA program was commissioned by the Dutch Ministry of Public Health, Wellbeing and Sports, in response to a report of the Health Council of the Netherlands. Autism spectrum disorders: a lifetime of difference  Autism’(DwooA). This project started in 2019. Besides building on the results of GoB, DwooA also was founded based on the results of the AWA Knowledge Agenda project. This AWA-broad inventory amongst 1,169 stakeholders further clarified needs to overcome gaps between science and practices . The DwoIn the following section, we will summarize the results from the GoB and DWooA projects that accumulated towards the conceptual outline of the integrative approach.Since varying factors were identified that contributed to the limited societal participation of participants, we organized these factors according to their level in the ecological systems of human development , i.e., aMost participants reported a lengthy diagnostic process to reach a first diagnostic classification of Autism Spectrum Disorder  and most struggled to accept the diagnosis:‘I did not like one bit of it… I am still not really accepting it [the diagnostic classification ASD]. I just totally do not feel autistic’ (A1♀).‘I thought “No, that cannot be, that is not what I have, that’s the children I see at my mom’s work, you know? That is not what I have.” I thought; “Yeah sure, big bye bye to you!” (A2 ♀).Usually a late diagnosis of ASD was preceded by other classifications that did not fit as the participant’s insight in own functioning increased in treatment .Some participants felt under-estimated by others:‘“She could go to a sheltered workplace or school, but more should not be expected”, was said about me, but now I have completed intermediate occupational education and have work experience’ (A3 ♀).The opposite was also true, adolescents with ASD could also get over-estimated when based on cognitive functioning  a certain educational level seemed feasible. However, slower processing speed or atypical social–emotional maturation, may have hindered academic achievement and as a result, these teenagers may have constantly overextened themselves, building up tension and frustration over time:‘First with me it was obvious, I had high grades and my homework done in no time, so yeah, it was obvious I would do pre-university education. Yet later, things became too much, I began getting failing grades proving I had actually been walking on tiptoes without anyone noticing it’ (A4 ♀).Participants reported considering the massiveness of and chaos within schools to be detrimental. They felt it was crucial to experience overview and structure:‘Then the bell would ring, everybody packing bags and leaving, with the teacher still calling “o yeah, the assignment for next week is this and that” (A5 ♀).The need for structure might be obvious to people familiar with autism. And although the exact embodiment of this need might differ from person to person, it seems quite fundamental to most people on the spectrum. Yet, one of our participants insisted very strongly that while we might think this need for structure is a ‘no-brainer’, in fact this was not the case for some educational experts, with some teachers not knowing or not acting accordingly.Other participants mentioned difficulties in transferring from special primary education to main stream secondary education, because of the lack of adjustments for sensory differences. Participants indicated the sensory overload experienced made it difficult to keep an overview of activities, tasks, and adhere to a realistic time schedule. As such, offering a realistic schedule and support to adhere to it, is essential to prevent sensory, cognitive and/or affective overload.Although one participant also emphasized that school policy measures should not be exaggerated, it was important to create calm areas to regulate senses and tension, but certainly as important to offer a suitable (cognitively) stimulating environment to train both knowledge and skills for a world rich in constant stimuli.Finally, one of our program group members mentioned that he especially observed drop-outs during internship periods. This might be due to the fact that the employees coordinating these internship usually are not informed about the diagnosis of pupils, and as such, the organization that offers the internship is also not informed. Finding a suitable moment and person to open up to about relevant vulnerabilities is therefore an important yet delicate issue.Most participants report finding positions at their current school/job, due to the support of a school-support worker/ coach/intermediate social worker, as this support helped find the most suitable fit for their needs and desires:‘My coach helped me in a way that matched me; not pushing me constantly, that is what works for me’ (A6 ♀).‘My son now has a clear go-to-person. He gets overwhelmed easily and then starts showing annoying behavior. If he can immediately direct his question to the designated person, then he avoids getting overwhelmed’ (P1 ♀).‘I have a weekly meeting with my coach to help me keep a tight agenda. I now oversee what I have to do and how much time that will take me’ (A7♂).‘A social worker, quite a feisty one, who was clear about boundaries and a good kick in the butt. Without her I would not have graduated’ (A8♂).In the Netherlands, organizing appropriate services over time is complicated, as funding for psychological or social support has different sources. Access to mental health care requires a diagnostic classification while social services policies differ amongst municipalities:‘As a support worker, I got to know which consultant to talk to at which council to get the right amount of support within a certain school for my pupils. Yet, it has been very frustrating, since for my own child, by no means I can get such support, as at this school, they work with a designated contractor that only has one hour a week per pupil. This makes me think, how bizarre!’ (P2 ♀).Participants emphasize that not only support for the autistic person might be needed, but also for their proxies to support them. Moreover, support should not be removed as soon as the situation gets better, as this improvement is probably due to the support being there.Besides formal support, the proximity of informal social support is enabling participation in school/work. Such relations support in making decisions and having their back when the going gets tough:‘My mom can keep her patience very well. When all the anger blew over, she was a good support. Content-wise I could not always turn to my friends, but I could relax with them, which is important in its own way’ (A9♂).Especially a sense of belonging is important and might explain why some behaviors are considered anti-social:‘At one time, this guy kept following my friend, which really freaked her out. So I went up to him and told him to leave her alone. We ended up in a big physical fight… which did put me in trouble… but I don’t mind, ‘cause he was harassing her, and some people might consider my friends weirdos, but they are mý weirdos, you know, no matter what!’ (A10♂).Parents often are the mediator between school, health care and their child. Some parents did back out for a while, but when not interfering, their child’s situation escalated. For instance, one parent had to pick up their child from the street, because her son had turned homeless. Obviously, this takes much energy:‘To stay on top of it, not letting go, is needed, ‘cause if I won’t, we will all collapse. Our kids should feel they can rely on their parents, cause if they can’t, what’s left?’ (P3 ♀).Many participants indicate that collaborations between schools, care, social support, parents and youngsters often fail. Plans are made, but not persevered. Communication is often hampered or poorly timed.Interrelations between the factors described above get over-looked very often. For instance, externalizing problems  are actually fueled by internalizing problems . Managing problems at the meso-/macro-level  can only adequately be done, when timely signaling problems at the micro-level . These signaling skills, can only evolve over years and need to be developed and matured, fed by lived experiences, introspection and reflection. Such reflection can be facilitated in self-conceptualization, psycho-education and emotion regulation interventions. Yet, often structured booster sessions over time will be needed to keep bolstering the learning process, and help autistic people ‘to connect the dots’ within their often over-loaded minds that are stored with many detailed and affectively-charged memories.In the subsequent DwooA project we further delineated the phenomenon of stuckness. In the interview-schedule, we departed from potential problems at the micro level, but findings also reflected phenomena at the meso and macro levels  project. This project covered similar  themes in an interview study, but targeted people from the general population who successfully participated in higher education or higher income occupations, yet who struggled with psychological and existential issues. These people actually voiced similar experiences, such as avoiding activities, feeling pressure to succeed, and not always knowing who to turn to when in sorrow. Yet, our clinical experience with autistic people who got severely stuck, learned us that potentially the combination of heightened arousal and related stress at several social domains, limited self-regulation and reduced Therefore, we observe that this numbing state of being or feeling ‘stuck’ may be a prevalent phenomenon, that is important to resolve in order to contribute to increased participation/inclusion and meaning of life at the individual and societal level. Therefore, in the DwooA project, besides the interview study, we also conducted a Delphi study in order to specify goals on how to approach this complex issue. We reached consensus on four main goals: gaining 1. (self) knowledge, 2. (self) acceptance and/or 3. (self- and co-) regulation in order to 4. establish and maintain a suitable position in society . The themes from the GoB + DwooA interviews and Delphi studies are depicted in an integrative thematic map, please see Please note that we realize that Integrating insights and reflecting on the results of the previous process , we formulated the following hypothetical conceptualizations, as these may form the groundwork of our crescent in understanding :Undergoing events in the outer world continuously alters evaluations of the outer world and impacts experiences in both the outer and inner world, which creates a ‘conceptual crisis’ when outer world experiences do not fully match with internal mental representations and predictions e.g., . Thus, wPlease note that above claims are strictly hypothetical. However, in our experience, many neurodivergent people seem to relate to similar ‘body–mind-(dis)connection’ conceptualizations. This could be the case because such explanatory models .To finish off with, we want to emphasize that alongside this clinical stance, we as the AWA consortium are also taking on an empirical stance. Therefore, in the following stages of this shared iterative process, we will further co-create and empirically evaluate the integrative approach, that aims to support identity development by facilitating teachable moments and concrete actions towards self-realization, and by teaching about authenticity and social identity as products of reciprocal trust, craft and tolerance . Any reak.greaves-lord@lentis.nl.The data analyzed in this study is subject to the following licenses/restrictions: these are qualitative transcripts that can be retrieved from the first authors. Requests to access these datasets should be directed to The studies involving human participants were reviewed and approved by TWOR Maasstadziekenhuis. The patients/participants provided their written informed consent to participate in this study.All authors listed have made a substantial, direct, and intellectual contribution to the work and approved it for publication.