This study illustrates the impact on forensic psychiatric investigations (FPI) of time-specific scientific theories and moral normative considerations. A comparative historical perspective illustrates historical FPI procedures (i.e. methodology and focus), based on two matched FPI case reports from the 1930s: a man and a woman who had shot their respective spouses. First, in the analysis, a comparison was made between the two cases regarding assessment procedure and focus, applying a gender perspective, and second, stability and change in FPI praxis between the 1930s and the 2020s were identified. Similarities and differences were discussed based on changes in FPI praxis and influence of explanatory models within psychiatry. This can aid understanding of historical bias and indicate current bias and its risks to FPI reliability. Since the eighteenth century, various types of forensic psychiatric investigations (FPI) have been conducted in Sweden and, since the beginning of the twentieth century, in a similar manner to today . The FPI should not be punished for acts committed within this state’. Acts committed by a person with mental incapacity due to a developmental disorder, dementia, etc. [sinnesslö] should also be considered exempt from punishment. If the person did not conform to the criteria of §5, but his or her mental state still deviated from the normal , then the court could grant a reduced sentence depending on the circumstances of the case .In Sweden during the twentieth century, FPIs were carried out after referral from the court, in approximately the same manner as today. The purpose of these FPIs was to examine whether the accused person fulfilled medico-legal requirements for exemption from a legal penalty and instead was recommended for forensic psychiatric care. According to the Swedish penal law from the 1930s , an exemption from a legal penalty existed when an offender was ‘mentally ill’, or had ‘come into such a state due to no fault of their own, that they are out of their mind,The Swedish law has changed since the 1930s and concepts have been adapted to contemporary scientific knowledge. One rather substantial change was the introduction of the medico-legal concept of SMD. This term is central to FPIs, and has been elaborated during the present century. As the legislative history shows, this concept maintains historical focus on the exemption from a prison sentence of those with psychotic-like states and severe forms of intellectual disability. However, more diffuse states have also been relevant to psychiatric decision-making regarding exemption due to mental incapacity, although they are more difficult to evaluate based on clear legal and psychiatric diagnostic guidelines alone. In such cases, the forensic psychiatrist’s reasoning regarding what should constitute loss of reality orientation is more likely to be affected by the expert’s own ideas and moral values . To illustrate this, two matched cases have been explored in the present study: a man and a woman, each undergoing an FPI for having murdered their respective spouses.how FPIs are conducted (i.e. methodology) and what is focused on .The overall aim of this study was to gain a better understanding of how ‘soft factors’ within forensic psychiatric decision-making could impact FPI praxis, using two cases from around the 1930s. By analysing these cases, it was possible to illustrate how contemporary scientific and social context could influence FPIs, including how the application of concepts and focus in the reports appears to be time-dependent due to specific conceptualizations of factors such as gender. This can not only aid the understanding of historically relevant bias, but also, due to a sharper contrast, indicate current forms of bias and their associated risks in today’s FPI praxis see . The stu [HSLF-FS 2015:31] and the authors’ extensive experience of FPI praxis), and discussing its historical stability and change.A comparative historical perspective was used to illustrate historical FPI assessment procedures, using two written FPI case reports from around the 1930s. The methodology and specific issues were examined in two ways: (a) comparing two cases regarding assessment procedure and focus, as well as applying a gender-perspective on this praxis, and (b) comparing aspects of FPI praxis in the 1930s with that in the 2020s  and a woman (W) who had shot and killed their respective spouses. Women commit fewer crimes than men, both now and historically, leaving men in a considerable majority within historical FPI records. According to our investigations, women who had committed homicide (adult victim) were very uncommon, and almost all would have been sent for an FPI, as is still the case today see: . The stuA content analysis of the FPIs was performed with a focus on the three main areas of case description, gender comparison and time comparison, including six sub-areas in total.Case exploration:aspects of the forensic psychiatric data collection: how and from whom data was gathered in the respective cases;how the person was described within the FPI, what biographical areas were focused on, and how the following were described: (a) mental functioning , and (b) everyday functioning ;how the crime and its context were described and explained within the FPI;conclusions and recommendations given in the respective FPIs, and subsequent sentences;Gender and time analysis: similarities and differences:are there similarities and differences between the cases from a gender perspective?are there similarities and differences between the 1930s and 2020s in FPI procedure and report?In the gender- and time analyses, there was a specific focus on whether references were made in FPI reports to contemporary scientific framework and to moral values without theoretical or empirical basis. but argued for a reduced sentence according to Penal Code 5 chapt §6. Nevertheless, after M had spent several months in a hospital, the third psychiatrist  argued for exemption from punishment based on Penal Code 5 chapt §5. Due to lack of witnesses to the actual moments when the shootings took place, it is important to note that all information presented in the FPIs concerning this part of the narrative comes only from W and M themselves.The mental states of both M and W at the times of their respective crimes were considered to meet legal requirements for criminal exemption from punishment (i.e. eligible for forensic psychiatric care), and they were sentenced according to the FPI recommendations. The woman, W, was examined by a leading forensic psychiatrist at the time (Professor Olof Kinberg). Her FPI included a long period of observation, psychometric testing and several reference letters or interviews with persons who had known her from child- to adulthood. During his FPI procedure, the man, M, was evaluated by three different psychiatrists. The first psychiatrist was undecided and considered that more clinical observations were necessary; the second concluded that M was not to be considered exempt from punishment Some issues were almost always brought up, or at least noted as ‘not relevant’ for the case in question. One of these central aspects was to establish the level of intellectual capacity by the structured testing used at the time of the FPI , which is also investigated historically through references . Personality was another central area of investigation, which included patterns of affective functioning, both regarding extreme affective expressions and whether the person displayed too ‘low reactivity’ during an extreme situation. Hence, affective patterns perceived as deviating from what would be considered a normal reaction according to contemporary social standards were of interest. Other central areas always noted, and often described in detail, concerned somatic or medical status, biological heredity of psychiatric illness, and historical and current use of alcohol or drugs. The somatic assessment was extensive , searching for somatic diseases that could affect cognition (e.g. syphilis: Wasserman’s test). Furthermore, in 1930s FPIs, in the borderland between medical or somatic and personality factors, there were often descriptions of the investigated person’s morality being associated with both biological aspects of heredity  and social or environmental factors related to biology and personality. Morality appeared as a separate area of investigation, since it was always touched upon, tested separately, and associated with biological functions as well as personality. For example, a structured, moral investigation was done to ascertain the person’s level of moral maturity . Non-structured moral assessments were also made, establishing the person’s level of moral reasoning, which the psychiatrist based on conversations with him or her.The FPI reports around the 1930s were not, as today, written according to a standardized format (including required areas under fixed headings). Nevertheless, the two cases in focus were representative of FPIs from the 1930s.W was in her early twenties when she shot her ex-husband with a pistol. She came from a wealthy family and had siblings. No indications of hereditary psychiatric diseases were found within her family, although the mother was described as unemotional and asthenic. W had described her relationship with her mother as strained, contrary to her warm relationship with her father (who had died in a car accident during W’s early teens). She was described as a ‘feeble child’ and quite spoilt. Her school attendance had been fragmented due to her family’s frequent travels abroad . She went to boarding schools with house-keeping or management as a focus, and referees (e.g. her teachers) reported her as having displayed a lack of engagement and low working morale.Based on reference material from family members and acquaintances, W was described as an egocentric and self-involved child or youth. When she was corrected, she did not show indications of shame or remorse, but defiance instead. She was described as a ‘leader’ of a group of girls involved in mischief at school (including a theft) and was characterized by teachers not as untalented but as uninterested in schoolwork and ‘rather aimlessly flitting from old pleasures to new ones’. She was described as emotionally unstable, sensitive to stress with hysterical traits, and in her late teens was admitted to a hospital due to nervous problems. As an adult, she was described as shallow, quite sensationalist, seeking others’ attention and approval, being easily led by others and dependent on them, but also as defiant and stubborn when criticized. Her moral ability was considered underdeveloped and her constitution as asthenic, characterized by unwillingness to work, being easily tired and irresponsible. She had a history of accidents: three car crashes with subsequent hospital care, where at least one seems to have been intentional (driving into a tree when distraught after an argument with her husband). She had been admitted to a psychiatric hospital after a suicide attempt (about one year before the crime). There was no mention of friendships. She met her husband during her mid-teens and was considered to have adopted a dependent attitude to him.According to the FPI, her husband had already started courting other women during their luxurious honeymoon . When they returned to Sweden, they settled in an apartment. Her husband started a company with W’s finances. She gave birth to a son about a year after the marriage. She did not work, either outside or inside the home (servants kept the apartment and cared for the child), and lived comfortably on an inherited fortune. The matrimonial disharmony escalated after the honeymoon. A continued high alcohol consumption and many quarrels were noted, including verbal and physical violence, intense reunions and threats of suicide from both parties when one of them wanted to leave the relationship. The husband’s gun was repeatedly used in their arguments, where he sometimes threatened to take his life and/or carry out an extended suicide (killing himself and their son).The husband was described in detail, principally as a charming womanizer, and W craved his attention, but her family opposed their relationship. She married him against her family’s wishes as soon as she reached her majority (about four years before the crime). Based on his actions described in the FPI, he comes across as callous. For example, during their honeymoon, he did not travel with her to Sweden when she needed medical care after a car crash in France. Instead, he stayed there, spending money on women and gambling. Finally, they filed for divorce, a process in which W was aided by her lawyer and physician. But, during the proceedings of this divorce, her husband tried repeatedly (even with threats of violence) to get W to resume their marriage.The crime occurred in his home where W had been persuaded, under threat of suicide, to visit him. In the week preceding the crime, there had been several verbal arguments and physical violence between them. According to W, the man started to convince her to take him back as soon as she arrived his apartment. At the FPI, she described how she was held there against her will. They consumed ‘quite a lot’ of brandy, and she reported that the man raped her repeatedly. The gun was brought out several times during the time she was there (afternoon to midnight). She described the events leading up to the shot: an argument when the man held the pistol, aiming it towards his chest, urging her to kill him if she did not resume their marriage. She said that suddenly she held the pistol and pulled the trigger ‘mechanically’ and ‘without will’, obeying her ex-husband’s voice. W described her state of mind at the time as confused due to fatigue, alcohol, threats and rapes. Thereafter, she called the police (00.10 a.m.), her lawyer and her physician stating that she had shot her husband. When the physician and police arrived, they described her as ‘very hysteric’, distraught and somewhat incoherently repeating ‘I shot him, I shot him’, and ‘I shot him because he wanted to rape me’. At approximately 02.00 a.m., the hospital announced that the husband had died.It is certain that the unhappy development of these two persons’ fates show that the life of the rich, if it is wasted in idleness and without fulfilment of duty, if it is ruled by pleasure-seeking and abuse of poisons, if it is led in such a way that almost all rules for a healthy life, both bodily and mentally are violated, if it lacks sensible goals, interests outside the individual and a sense of commonality with the whole, easily derails into a senseless ‘witch-dance’, where the sense of what humans with a maintained decency may allow themselves, after a while is eradicated completely and where the human individual is exposed to be a victim for almost any kind of delusions.W’s cognitive ability was tested, with results within the normal range, but with a low level of general knowledge. She was deemed as unpractical, with low persistence. Regarding mental health and personality, she was described as constitutionally weak, passive, amoral or immature or inconsiderate, pleasure-seeking and hysterical. The forensic psychiatrist viewed the case as a combination of unhappy environmental  influences and a constitutional weakness, summarized as follows:The conclusions of the FPI were that W had committed the crime during a ‘state of psychological weakness and illness that, regarding its effects on [her] actions, was to be considered equal to mental illness’ . The forensic psychiatrist also recommended that W should receive treatment that, according to common practice, was allotted to such accused persons . In the 1930s in Sweden, psychiatric diagnosis was not made according to a standardized nomenclature. Instead, a personalized diagnostic description was given, and W was diagnosed as ‘a constitutionally abnormal, hysterical, psychoneurotic individual, who several times has suffered from mental illness’. His relationship with his parents and family was not further described in his FPI.M was 37 years old when he shot his wife with a rifle. His father had a university exam (undisclosed type), was a well-respected teacher, and ‘known to be very gifted and of great willpower’. His mother was considered intellectually feeble (‘imbecile’), religiously brooding, suffering from periodic depression with possible manic episodes, and she had committed suicide when M was a child. Three close relatives had long-term stays at a psychiatric hospital, with one presumably committing suicide . M also had a sibling who had ‘done well in his life’. He was described as drinking more frequently during his marriage, but rarely at home.M had difficulties in school and had to repeat one year since he did not meet the course year requirements. Nevertheless, he managed to complete a degree in agriculture (MSc), but with ‘great difficulty’. In testimonies given by other students on the course he was considered ‘not gifted but very diligent’, while his sibling described him as lazy. After graduating, he worked on an estate where his uncle was in charge; he left after some years to manage another estate. Regarding childhood personality, M was described as ‘feeble, soft and compliant, reserved, volatile and fickle’. During his higher education, course comrades described him as ‘extremely suggestible, quiet and withdrawn’, ‘kind and submissive’, but he could also be very stubborn and sometimes difficult to ‘come to terms with’. According to a relative, he ‘often exaggerated difficulties regardless of how small they were’, and ‘sometimes it was as if his train of thought just “stopped” and he rehashed the same thing over and over again, especially when he had been drinking’. Overall, his personality and behaviour changed when he drank alcohol. When intoxicated, he had on several occasions behaved in a socially strange way and ‘acted as though he was not completely normal’.At 30 years old, M married. His wife, then in her early twenties, came from a wealthy family. The couple moved to his mother-in-law’s estate and, throughout their relationship, his wife paid for all expenses. The marriage was described in the FPI as initially good, but then turning bad due to M’s ‘periods of dark mood’ during which he often talked of suicide and continually sought comfort from his wife. He was afraid to sleep alone and needed her presence (or one of the children) in bed for comfort. His insecurity and obsession with suicide was described as highly irritating for his wife, causing arguments. A few years into their marriage, she started to spend more time with a family friend, Mr X. The wife and Mr X were described as getting closer over the years and, while she was alone on vacation with one of their children, Mr X visited her overnight. After this, M and his wife spent more time separately but did not divorce. In the FPI, the wife was described by M’s brother as ‘snappy’ towards M, which the brother considered to be ‘her usual way’.M shot his wife one night at the couple’s home. They had lived apart for a while, and she was coming home for one night before leaving to stay with Mr X. That day, while M was hunting with friends, he had been observed to ‘grimace, sitting on a stump and twisting his hands around his rifle’. M later said that at the time he considered suicide, and he continued to do so for the rest of that evening, including preparing for suicide (e.g. sorting his important papers). During the evening, his wife packed her things, and they argued about Mr X. M was very stressed and he smoked cigarettes ‘constantly’ throughout the day. He had drunk 10–15 cups of coffee and a considerable amount of alcohol. His anxiety escalated when his wife did not go to bed with him. M went back to her repeatedly, asking the same question (i.e. if she would come to bed soon), which finally made them both become very irritated. A witness, the children’s nanny, said that he suddenly fetched his rifle and stood still, aiming at his wife. His wife did not appear afraid, but then M shot her in the chest. She died in the hospital about one week later, the bullet having caused a severe infection. At the hospital, she said that she had gone into her husband’s room to fetch some of Mr X’s books, where M had grabbed the rifle. After an extended process of M loading the rifle in front of his wife, he said ‘You do value your life don’t you?’, and aimed his rifle at her for a long time. She said she did not think that M would dare to fire and reported that ‘he had threatened her before in a similar manner, but had never dared to do anything when she had looked at him’. The witness had heard the wife yell ‘Miss!’  and described seeing M aim the rifle at his wife who then lay wounded on the bed, whereupon M fell over her and repeatedly screamed ‘I’m sorry!’. He was perceived as shaken and acting in a confused manner. The wife was transported to the hospital, and M travelled to his father after a few days. The family agreed to keep the crime a secret if the wife survived.M was assessed by three psychiatrists: the first while in prison, and the second in a psychiatric hospital after a recommendation from the first. The third expert was consulted since the previous two had come to different conclusions. During the first assessment, all the main information usually included in the FPI was collected, but, according to the psychiatrist, no conclusion was considered possible without a period of observation at a psychiatric hospital. The second assessor, the hospital psychiatrist, added his own impressions of M, but did not add information from new sources regarding M’s background. The third expert added his own impressions and also added information from one referent (M’s sibling). M was considered to have heredity for both cognitive deficiency and affective disorder of a principally depressive nature with anxiety and lapses of impulse control or suicidality. He was considered to somatize his psychiatric problems, which the FPI noted as complaints about numerous ailments  related to anxiety. M claimed to have had suicidal thoughts, escalating in intensity, during the six months preceding the crime. He did not have any suicidal thoughts while in custody, but he was certain that they would reappear when he was released. Regarding intelligence, M was described as relatively normal, but no intelligence testing was conducted. Instead, the main focus of the FPI was on his personality, emphasizing that M was terrified of being alone and got particularly anxious when about to go to sleep. In the expert assessment, the sibling described the family as more worried for M when he did not complain, that he had become increasingly apathetic during the approximately six-month period preceding the crime; the family had then feared suicide. The three psychiatrists who assessed M came to the following conclusions.(1) Prison psychiatrist: M was considered to externalize responsibility, not showing any remorse and feeling sorry for himself. M maintained that it was an ‘accident that he could not have prevented’. One thing described in much detail was M’s preoccupation with a book presenting ideas that, according to M, explained the crime: that not having sex creates diseased states in men. Thus, M concluded that ‘his wife’s coldness and refusal of “eroticism” had made him completely unhinged’. However, the psychiatrist considered observation to be necessary, recommending M to be sent to a psychiatric hospital for further assessment.(2) Hospital psychiatrist: The second psychiatrist  considered that the requirements for legal insanity  could not be applicable to an ‘explosive act of emotion committed while under such a psychological state of tension’. He considered that, instead, M must have been in such a state of mental abnormality as described in 5 chapt §6, as to be entitled to some kind of leniency due to extraordinary circumstances.(3) Expert psychiatrist: The third psychiatrist, Professor Bror Gadelius, described how M blamed his wife for him having committed the crime due to sexual frustration, but Gadelius remarked that he considered M’s ‘sexual need never to have been particularly strong’. One hypothesis advocated by Gadelius was instead that M’s proclivity to read sensational stories, often love dramas that ‘were always on the newspaper’s front page’, could have affected him and boosted his strong reactions. Gadelius concluded his investigation of M as follows:debil] badly equipped for life and its stressors. His urge to commit suicide which M talks about so much is in fact in his blood and probably also the rashness and impulsivity that caused his plans to commit suicide to derail and be directed towards his wife. The sexual problems, about which he himself talked so much, could in a certain manner be related to his ‘worried and “fumbling being” and the un-manliness within him that has caused his wife to lose her affection for him’.M is from a psychological perspective a disharmonious developed personality . . . . He is one of the ‘feeble minded’  Mr X physically instead of [as M had done] endure a continued contact with him and engage [his wife] in an argument regarding Mr X’s books’. W was described as having a ‘very immoral way of life’, ‘drinking much alcohol’ and ‘other unsound habits for body and soul’. In W’s case, it was not clear whether her habits were unsound for a woman specifically, but definitely considered as ‘unsound’ for a person in her social position. In the psychiatrist’s formulations, it was rather her violation of Victorian norms  through lethargy, disinhibition and the ‘duty of keeping healthy’ ; this situation certainly impacted the relationship dynamic, but perhaps especially so in M’s case due to his high anxiety baseline and sensitivity to change.In line with praxis in most FPIs around the 1930s, no standardized diagnoses were made for M and W. From the personalized diagnostic judgements presented, both were considered to suffer from personality-related problems that had caused them, under these highly stressful circumstances, to act out violently. Some differences regarding diagnostics between them can also be seen in the FPIs reflecting notions more about gender roles and social position then about diagnostic categories. For example, W’s problems were considered as an expression of a hysteroid disposition, and judged as unfit to meet life’s demands due to having grown up spoilt in a wealthy family where she had not taken any responsibility for her life. The combination of a propensity to react in hysterical ways and inability to take responsibility left W badly equipped to handle life’s challenges. M, on the other hand, was described as lacking virility, being prone to rumination, being depressive, dependent, and unable to take charge as was expected of a man in his position. Thus, the diagnostics are heavily related to aspects of how M and W deviated from what would have been expected of them regarding their gender roles and social positions. That W was assessed by an expert immediately, while M was assessed by two other psychiatrists before meeting an expert, also generated some case differences. Although both received forensic psychiatric care according to Penal Code 5 Chap §5 , the second psychiatrist instead considered leniency and not insanity in M’s case, indicating less clarity in how to consider his perceived pathology in legal terms. The reason for this discrepancy between these cases was unclear from the arguments in their FPIs. It could, of course, be due to the fact that these cases were difficult to assess from a legal standpoint, but nevertheless it does not alleviate suspicions that it was regarded as more unexpected and pathological of a  woman to kill her partner than for a rejected man to do so.one narrative, especially since different professions may consider different theoretical aspects to be relevant for understanding the person and their crime. However, an agreed narrative could arise since the team works together during the course of the FPI, discussing their progress, obtaining results and evolving hypotheses. The characterization of the person ‘as a whole’ may therefore emerge as less clear today, and in all probability also less sensitive to one psychiatrist’s individual ideas (including stereotypes and bias) than in the 1930s. Another overall change over time is that information is today presented with less interpretation by the psychiatrist  compared with what is seen in the FPIs of the 1930s, when personally held values could be included more freely to support conclusions. It was clear that the included value judgements in these cases influenced conclusions ; such moral condemnations by the psychiatrist of the offender’s or victim’s behaviour, character or lifestyle would not be tolerated today, according to current FPI report guidelines (HSLF-FS 2015:31) (see Note 3). Naturally, this does not mean that today’s FPIs are devoid of value-laden words or reasonings, but it would be difficult nowadays for a Swedish FPI expert to get a report containing clearly moral-/value-oriented statements (as exemplified in M’s and W’s cases) without an empirical basis accepted by colleagues and the court. Of course, it should be noted that some terms that are used in today’s FPIs will, in the future, be considered value-laden and as expressions of ‘immorality’, and some assumptions and measures will be considered as not ‘empirically based’ any more. For example, to use the word ‘immature’, which can sometimes be seen in FPIs from our decade, is a form of, if not moralizing, at least a value-laden word since it is the negation of a norm that is considered as positive. Also, the term ‘immature’ lacks a clear definition that separates it from ‘mature’. Instead, as The most striking overall difference in FPI report focus over time is that the presentation of a detailed narrative in the 1930s, resembling a full biography including information from several referees, changed into a focus on the individual’s current psychological symptoms and functioning. Hence, the description of the crime, the person and his or her life history, and the mechanisms regarding how the person came to commit the crime are considerably less detailed today, but are more clearly referenced in empirically founded documented information . One reason for this change from a comprehensive narrative to a much more focused report is probably that one psychiatrist is no longer solely in charge of the FPI. Today, a psychiatric team of experts (three to four professions represented) works from their respective professional perspective to outline parts of the person’s life relevant to the current crime. Each expert then writes their own report. The team structure with multiple reports presumably hinders the assessment from becoming  that included several areas of the offender’s behaviour and psychological or social functioning. The requested information was partly of an empirically verifiable nature, but also included personal judgements of the assessed person’s behaviour and morality. To ask referees such questions today is considered unethical and does not hold explanatory value within an FPI. Today, oral interviews with select referees are made in some cases but the requested information is then specific to the case and to the SMD assessment. To send out forms indiscriminately to potential referees would today constitute a breach of secrecy since, by doing this, each recipient is informed that the offender in question is undergoing an FPI.In both the historical cases, the psychiatrist collected a large amount of information from a broad array of areas, and contacted several referees. Today, a similar broad base of information sources is used, such as clinical observations, interviews with the offender, standardized testing, self-report forms (results compared to norms), but only rarely interviews with referees. Information sources considered of particular importance today are: meeting and interviewing the offender, and observations in the psychiatric ward where the FPI is conducted . The maithe time of the crime and during the FPI, not comprehensively describing the person’s history in these areas and development up to (and including) the FPI. This results in a considerably shorter and more standardized FPI report in the 2020s, aided by it containing sections under specific headings. Despite similarities, some areas emerged as main examples of changes in FPI content over time.In the FPIs of the 2020s, the emphasis is on psychiatric symptomatology, on cognitive and personality functioning, and on general lifestyle and everyday functioning. All these areas were noted in the 1930s FPIs, but now the focus in these areas is mainly on  However, in the 1930s their sub-functional sexuality seemed to be considered relevant to psychopathological processes, and as an explanatory model argued from a somatic stress and tension perspective as well as a more diffuse idea of mutuality. Today, sexuality from a biological ‘stress/tensional’ perspective is not used as a possible explanatory model for violent outbursts . However, problems with social interpretation, such as when misinterpreting interaction as a sexual invitation, could be included within a broader ‘social interaction problem’ in today’s FPIs.Problems concerning sexuality were cited for both W and M, but it was not considered relevant to their crime as a ‘biological’ explanation by either psychiatrist. Personality and cognitive ability were assessed by the psychiatrist in the 1930s, but are now assessed by the forensic psychologist. While results of cognitive testing related to norm group data figured in FPIs of both the 1930s and the 2020s, personality assessment was less standardized in the 1930s. Today, personality assessment often includes use of standardized measurements to highlight personality traits from a typological and dimensional perspective, including a norm group comparison. In the 1930s, personality assessment was more clearly blurred with social values and moral opinions, and no structured forms or comparisons with norm groups were used. Today, cognitive testing is often done, and considered necessary if there are indications that a low intellectual functioning could have affected the offender’s behaviour. A structured intelligence testing was almost always made around the 1930s in Sweden, but in our two cases only W was tested. Since it was M who had not met course demands and struggled in school, he would today most likely have been tested. M’s cognitive ability would probably also be considered more explicitly today when discussing his affective instability and impulsivity, presumably since there is a significantly larger theoretical focus within psychiatry today on children’s neuropsychiatric development and how they relate to cognition later in life.Long-term personality dysfunction, including affective lability, was emphasized in both M’s and W’s FPIs.Alcoholismus chronicus . In both FPIs, descriptions of earlier alcohol habits were presented and, in M’s case, one of the psychiatrists even tried to estimate the exact amount consumed, which indicates that the impact of the alcohol was considered relevant. To assess whether the offender has been alcohol intoxicated and decide on its potential impact on functioning at the time of the crime is still important. Today, somatic tests are also conducted to investigate drug habits , while fewer options were available in the 1930s (e.g. tests of liver functioning). Neither M or W was diagnosed with  This is an example of how explanatory models – perceived as scientific at the time of creation but discarded by later research as based on faulty assumptions – shape the content and focus of psychiatric assessment.Generally, the body was in focus to a considerably larger extent in 1930s FPIs, as a focus for both description and assessment , but also to underpin the psychiatrist’s hypotheses regarding types of psychological dysfunction and suffering. Thus, it appears that the border between bodily and mental symptoms was less distinct in the 1930s. For the majority of cases in 2020s FPIs, somatic description and examination, as well as a discourse of somatic causes for psychological manifestations, are virtually non-existent, and somatic tests are only made on clear indications – not routinely. This can be related to the decreased explanatory use of biological models for psychological symptoms, presumably partly influenced by decreased importance  and partly due to the perceived less-clear explanatory value regarding how somatic tension can have a psychological impact relevant to impulsive and violent acts. As a consequence, the importance of assessing the body, besides testing for tumours or genetic disorders creating severe hormonal disturbances, is considerably less within psychiatric explanatory models in the 2020s. In contrast, in the 1930s the somatic examination was highly structured , including a somatic ailment anamnesis and, importantly, also describing the shape of the body. This focus was based on perceived explanatory ‘empirically based’ scientific models at the time, such as Ernst Kretschmer’s model, which was popular in Sweden.The behaviour and lifestyle of the offenders’ partners, who were the victims, were described in detail in these FPIs. Today, the in-depth level of description, as well as the value judgements seen especially in W’s case, have been abandoned, and the emphasis is nowadays on the assessed person. The focus on personal integrity, also reflected in today’s guidelines for FPIs, have presumably contributed to this development. In comparison, regarding children, it was recorded that both M and W had children, but parenting ability was not noted or evaluated in either case; presumably this would be an important factor to consider in the social worker’s investigation in the FPIs of the 2020s. M and W both displayed inappropriate behaviour towards their children, which today would have resulted in a report to social services, but at the time of the 1930s FPIs was not discussed.Diagnostic and Statistical Manual of Mental Disorders [DSM] system), where symptoms and specific behaviours are the focus, making the characterization of symptomatology clearer but missing ‘the whole’ – as reflected in the 1930s narratives. Instead of finding the ‘right’ diagnostic category  and victim blaming. Constant monitoring of FPI reports is necessary to maintain such a balance. Also, in the two 1930s FPI reports analysed here, clear moral condemnations were included regarding lifestyles and behaviour based on contemporary social norms. Moral judgements, including those on gender and social class, were often underpinned by references to vague psycho-biological models in the studied FPIs. Such formulations would not be accepted in the 2020s. The concept of an SMD is narrower and is clearly defined in legal texts today, which should make decisions (at least a considerable bit) harder to base solely on individually held moral and value judgements than in the 1930s. Also, due to the team structure, FPIs today are less dependent on one expert psychiatrist’s notion of ‘normality’ and ‘good behaviour’. However, in the 2020s, the psychiatric field risks compartmentalizing information according to an almost Linnaean taxonomy of overt signs, which carries other problems. By focusing on symptoms and overt behaviours in psychiatric diagnostics underlying FPIs, the complex and often contradictory ‘whole’ image may be lost in favour of factors or lines of arguments that are easy for non-professionals to understand, due to their high face validity. More qualitative research and more historical research could illustrate the consequences of such superficial praxis and compare it to a more holistic perspective, capturing the synergies of thoughts and feelings that drive behaviour (and vice versa). These synergies are an important aspect for professionals working with FPIs – as well as for the courts – to consider to be able make as accurate decisions as possible.


I found the recent article by Dao et al. titled “Retrospective analysis of real-world data for the treatment of obstructive sleep apnea with slow maxillary expansion using a unique expansion dental appliance (DNA)”  rather iI believe this study has other errors. For example, in the Introduction, the authors state that “RME appliances … achieve expansion by applying centrifugal forces against the patient’s upper molars”. As a professor of orthodontics, I believe that such a clinical protocol would simply tip the teeth and produce a flawed measurement of the transpalatal width. In fact, orthodontists know there is no tendon in the human maxilla. In addition, in the Materials and Methods section, the authors state that “The DNA appliance comprises two upper and lower customized dental trays”, but the DNA appliance consists of only one, and the authors have mistakenly illustrated a similar device (the mRNA appliance) in Figure 1, which is also confirmed in a separate study by Katz et al. . MoreoveI also believe this study did not report its findings objectively, which is exacerbated by poor data interpretation. For example, the authors claim the DNA appliance reduced the median AHI by 46% in their study. If so, these results do not meet the current criteria for medical success, since the AHI needs to be reduced by at least 50% on average with an AHI < 10. The authors also reported several non-significant correlations between changes in AHI and transpalatal width, airway volume, BMI, age, etc., and included findings that did not meet their power calculation for sample size. Moreover, the authors claim that their study has a “representation of all ethnicities” and “the data could be generalized to the US population”. However, only one African-American patient was included in the study, representing 1% of the sample population, compared to 13.5% of the US population, according to the US Census Bureau (2022) [


Worldwide, around 21 million children would benefit from palliative care andover 7 million babies and children die each year. Whilst provision ofpaediatric palliative care is advancing, there major gaps between whatshould be done, and what is being done, in clinical practice. In 2017, theNational Institute for Health and Care Excellence (NICE) introduced aquality standard, to standardise and improve children’s palliative care inEngland. However, there is little evidence about what good experiences ofpalliative care for children are, and how they relate to the qualitystandard for end-of-life care.This study explored how the NICE quality standard featured in parentalexperiences of palliative care for children to understand what ‘good’palliative care is.Qualitative study, employing in-depth, telephone and video-call,semi-structured interviews. Data were analysed using thematic analysis,informed by Appreciative Inquiry.Participants were parents of children and young people (aged 0–17 years) inEngland, who were receiving palliative care, and parents whose child haddied.Fourteen mothers and three fathers were interviewed. Seven were bereaved.Parents were recruited via four children’s hospices, one hospital, and viasocial media. Good palliative care is co-led and co-planned with trustedprofessionals; is integrated, responsive and flexible; encompasses the wholefamily; and enables parents to not only care for, but also to parent theirchild to end of life.Findings have implications for informing evidence based practice and clinicalguidelines, overall improving experiences of care. What is already known about the topic?Worldwide, there are known inequalities in access to and provision ofpalliative care, and a major gap remains between quality standards, and whatis being delivered, in clinical practice.There is a postcode lottery of accessing palliative care because of afragmented healthcare system, with parents fighting the system to accesspalliative care and services.Terminology such as ‘palliative care’ is often misunderstood, has negativeconnotations and is often associated with imminent death.What this paper adds?Misunderstandings around terminology such as ‘palliative care’ andmisperceptions that the trajectories of children with life-limitingconditions are the same as adults, means children miss out on care that ishighly valued by parents.There are still marked differences in parents’ experiences of accessingpalliative care and end-of-life care services for their children,particularly for parents of older children and those with medicalcomplexity.Good palliative care is care that is co-led and co-planned with trustedprofessionals working in palliative care; is integrated, responsive andflexible; encompasses the whole family, and enables parents to not only carefor, but also to parent their child to end of life.Implications for practice, theory or policyAccessing charity funded services does not fulfil the care gaps experiencedby parents, indicating a pressing issue to meet the palliative care needs ofchildren and young people.Parents ask for joined up thinking and continuity across hospital and hospiceteams to provide a balance of intensive and palliative care support, whichencompasses the whole family.There is a need for health professionals to undertake further training inpalliative care and bereavement support, though further research is neededto understand professionals’ perspectives.1 and over 7 million babies and children die eachyear.2Prognoses vary markedly, with some children living only a few weeks or months andothers living into adulthood despite families receiving a diagnosis ininfanthood.3 In England, although many individual diagnoses are rare, as agroup, children and young people with life-limiting conditions are a larger patientpopulation than many other long-term conditions in children and youngpeople.4Worldwide, it is estimated that nearly 21 million children would benefit frompalliative care input5 is an important component of care these children and youngpeople will require. It includes symptom and pain management, provision of shortbreaks, psychosocial and spiritual care, and end of life and bereavement care. InEngland, it is provided by a range of services, including hospital-based teams,which provide ongoing care for a child, for example: for children with cancer by apaediatric oncology team; or for infants born with a life-threatening condition, bya neonatal team. For other children, palliative care may be provided by a children’scommunity nursing team, specialist paediatric palliative team, or a children’shospice.6 Provision also varies significantly by service, region andspeciality.Palliative care, defined as ‘an active and total approach to care, which begins fromdiagnosis or recognition and continues throughout the child’s life anddeath’,7 the GO-PACCS project 8; NationalPaediatric Palliative Care Clinical Guidelines, New Zealand; NHPCO Standards forPediatric Palliative Care, USA; and in the UK, End of life care for infants,children and young people with life-limiting conditions: planning and management.However, there are known barriers to accessing palliative care,9 meaningfamilies of children, even whom have similar healthcare needs, may receive a verydifferent experience of palliative care.11 Existing standards are alsonot widely applied in clinical practice, therefore there is an urgent need for acritical revision and update of current recommendations and practices to promote awider implementation of paediatric palliative care standards in allcountries.8Paediatric palliative care is not equally available in all countries, and whilstprovision is advancing, a major gap remains between what should be done, and what isactually being done, in clinical practice. Internationally, various standards ofcare and guidelines have been developed to improve the quality of paediatricpalliative care, for example: IMPaCCT ,12 and associated quality standard in 2017,13 although theguideline only applies to those aged 0–17 years. It sets out six quality statementsabout the care children with a life-limiting condition should receive  has qualitystandards, which set out priority areas for quality improvement, and are developedusing a robust evidence base and a rigorous process. They are a set of specific,concise statements that act as markers of high-quality, cost-effective patient care,covering the treatment and prevention of different diseases and conditions; andhighlight areas with identified variation in current practice. To help standardiseand improve children’s palliative care in England, NICE developed a new clinicalguideline in 2016 receive .Little is known about how the elements of care in the NICE quality standard featurein families’ experiences of palliative care, and what, for families, good palliativecare is. At this time, we do not know whether good palliative care could differfrom, or expand upon, the current NICE quality standard. Existing studies provideimportant insights about certain elements of palliative care, for exampledecision-making, Advance Care Planning; or highlight points in the care pathway thatcould be improved, such as around diagnosis, end of life, or when to introducepalliative care. However, they tend to provide fewer insights about provision andhow this is experienced.To our knowledge, there are no robust or recent UK studies exploring how the NICEquality standard features in parental experiences of palliative care for children orsought to understand what good palliative care looks like. This study aims toaddress this evidence gap and hopes to inform future service developments andclinical guidelines for children’s palliative care.14 It focussed on drawing out what works well (Discoveryphase) and what could be (Dream phase). Appreciative Inquiry has been successfullyused in a UK study looking at needs of children with a life-limiting condition inone region of England,15 and has also underpinned qualitative research exploringother areas of health.1619 There are five foundationalprinciples  who were receiving palliative care; or whose child haddied ; where palliative carehad been discussed .We recruited from organisations purposively across England to ensure variationsin care provision, and included areas diverse in terms of their geography,ethnicity and socio-economic status. Initially, all eligible parents wereinvited to participate. Subsequently, a purposive sampling strategy was used toensure that the sample included similar sub-groups of parents whose child wascurrently receiving palliative care and parents whose child had died, andreflects the diversity within this population of parents both in terms of theirown characteristics but also in terms of their child’s condition. Thesepurposive sampling criteria include type of diagnoses in the child, duration ofillness and prognosis, and age and capacity of child, all of which have beenidentified as potentially affecting access to palliative care.Charity organisations’ social media, four children’s hospices and 1 hospitalsupported recruitment. Health professionals discussed the study with eligibleparents either face-to-face or by telephone. All those interested were given astudy information pack in person, or by post/email. Packs contained aninvitation letter, parent information sheet, a consent-to-contact form, and apre-paid return envelope addressed to the study team, marked confidential.Parents could also return the consent-to-contact by email. Separate studydocuments were used to recruit bereaved parents and parents of a child with alife-limiting condition. Parents who were separated or divorced both received aninvitation pack for the study. For all families, parents were offered the choiceof being interviewed together or separately if more than one parent of a childwished to take part.20 We advertised via charityorganisations’ social media pages, for example: Facebook and Twitter. Parentswho were interested contacted the study team either by telephone or email andsent a study pack, as above.Parent advisors were keen for us to recruit via parent facing organisations toavoid healthcare practitioner gate-keeping.The study team contacted all parents who completed a consent-to-contact form, todiscuss the study, answer questions, check eligibility, and provide a consentform. Once consent was completed, arrangements for an interview were made.Parents were recruited October 2021–March 2022.21In-depth semi-structured interviews explored parents’ accounts of palliative carefor their child and wider family support, introduction of palliative care,discussions and planning, what aspects of care enhanced quality of life, andunmet needs. For bereaved parents, care provided during end of life andbereavement was also explored. Prompts for the NICE quality standards were usedto ensure these were covered across the topics. The semi-structured nature ofinterviews allowed for collection of rich data, comparison between individuals,and exploration of similarities and differences based on samplingcharacteristics.Parents could choose a video call or telephone interview (data collection periodduring COVID-19 restrictions). Where both parents wished to participate,individual or joint interviews were offered. Interviews were conducted by thefirst author .22 Interviews were audio-recorded and transcribedverbatim. Interviews continued until information power had beenreached.23 The concept of information power is based on fivedimensions, which have an impact on the power of the study: study aim, samplespecificity, use of established theory, quality of dialogue, and the analysisstrategy.24 Throughout data collection, we concurrently assessedour study against these five dimensions to decide when information power wasachieved. We posit that we have a narrow study aim, participants who holdcharacteristics that were highly specific for the study aim, theoreticalunderpinning, strong interview dialogue, and an in-depth analysis. Therefore,with these factors, we achieved information power with our sample size.Field notes recorded key points, observations and thoughts during and afterinterviews. During analysis this aided interpretation and encouraged researcherreflexivity.25 and informed byAppreciative Inquiry principles,14 specifically datacollection and analytical processes, with steps repeated whennecessary.25 We shaped the questions we asked parents, ensuring afocus on positive experiences and imaginings, as well as negative experiencesparents wished to share.Interview data were analysed using thematic analysis25 NVivo 12 was used for managing data.26 D.F.worked reflexively with J.H. to review coding, discuss themes and aid themedevelopment.First, DF listened to all audio-recordings. Interview transcripts were read andre-read for familiarisation, with notes taken on key concepts, generating ideas,issues and experiences. Data were systematically coded inductively anddeductively, across all transcripts, identifying all data in relation to eachcode. A priori codes pertaining to the NICE Quality Standards were used toensure these aspects of care were explored explicitly. Codes were grouped intodescriptive categories to explore means of codes and potential relationshipsbetween codes. Analytical themes were developed by summarising and seeking tounderstand coded data and descriptive categories and further explorerelationships.West Midlands – Coventry and Warwickshire Research Ethics Committee approved thestudy (REC reference: 21/WM/0152). Due to the sensitive subject matter of thisstudy, there were various ethical considerations to consider, both for theparticipants and the researchers themselves.Parents need to be able to make informed decisions about participating. Talkingabout their child’s palliative care, and for bereaved parents the death of theirchild, may cause some parents distress. In order to minimise this, this and thetopics that would be expected to be covered in the interview, were explicitlyacknowledged in the participant information sheet and repeated in telephoneconversations with interested parents. All communications made it clear thatparents could ask to have a break, stop the interview at any time, orre-schedule it for reason, or ask not to answer a specific question or speakabout a particular issue. Parents were reminded about this at the start of theinterview.The possibility of becoming upset due to the topics discussed was explicitlyaddressed by the researcher at the start of the interview in order to putparents at ease and also to impart to them a sense of control over the interviewprocess. During the interview, the researcher was attuned to notice signs ofunease or distress. Towards the end of the interview, the topics covered servedto lighten the interview. At the end of the interview, the researcher askedparents whether they would like to receive a follow-up call, after theinterview, at a time chosen by the parent. This was used: (a) to check theparent was happy for their interview to be used for the study; (b) as anopportunity for the parent to raise anything they reflected upon since theinterview; and (c) to signpost them to organisations for support ifrequired.In addition, researcher well-being was an important ethical issue to consider andwas addressed throughout the study. The research team have extensive experienceof working on studies, which present similar challenges and have a highemotional load. In preparing for data collection, two pilot interviews wereconducted with members of the studies Patient and Public Involvement panel andthen discussed in terms of questions and topics asked, flow of the interview,emotional load and well-being. There was a pre-determined escalation procedurein place and the Principal Investigator was on call during all interviews toprovide support if required. The researcher and the Principal Investigator thendebriefed after every interview and had regular supervision meetings throughoutthe study, particularly during data collection and analysis, which are timeswhen the emotional load of the study were greater.Parents reviewed the study proposal and actively contributed to the study design.They highlighted the importance of: including parents of children with alife-limiting condition and bereaved parents; diverse end-of-life careexperiences; developing a sampling strategy; and advertising through socialmedia. Parents helped prepare participant facing documentation and piloted andrefined interview topic guides. They provided feedback on initial analyticalthemes, providing new avenues of thoughts, and clarified aspects of thedata.n = 13; fathers: n = 2). Seven werebereaved parents, bereaved between 12 and 24 months (median = 19 months)  . Nine vi14 wishes of parents and their continuing needs.The NICE statements featured heavily in the themes and sub-themes . Table 5NICE Statement 1 – Infants, children and young people with alife-limiting condition and their parents or carers are involved in developingan Advance Care PlanParents often described the introduction of an Advance Care Plan as a difficultand emotionally laden conversation that some found difficult to process. Thiswas sometimes compounded by a lack of clear communication from professionalsabout planning one, with some parents experiencing professionals avoiding thesedifficult conversations.I think we were told on a Friday or Saturday that [clinician] was comingin early next week and we were like well, if there’s something to sayjust tell us now but you could certainly tell that no one else wanted tobe the bearer of bad news. (0103)Initial discussions about Advance Care Plans mostly happened around the time ofreferral for palliative care. Experiences varied however, with some describing asingle conversation and others a more gradual process. Instances whereconversations went well were when professionals were optimistic and focused onimproving quality of life, rather than just focussing on end of life. Positivediscussions about palliative care were also based on professionals givingparents the time they needed, which varied across families, to accept theirchild’s diagnosis and the need for palliative care. Ensuring palliative care wascommunicated as a life-long intervention also helped to ensure the focus was notjust about end of life.I didn’t really understand, I wouldn’t even put the referral through orget in contact with our local hospice . . . So the nurse at the time,she was absolutely brilliant, she did it all for me. Our local hospicegot in contact with me and again I was like, “I don’t want to do this,this is too real”, so my emotional feelings were really probably quitenegative ones because I was like, “No, I don’t want to be here. I don’twant to be doing this. (0417)She doesn’t [have an Advance Care Plan], but that is on our list ofthings to do, we’ve talked about looking at it, but it’s been difficultbecause it’s something that I want to do but her mum won’t want to doit. She doesn’t feel comfortable or likes the idea because it seems,kind of, final, and it’s not something she wants to think about. It wasa very abstract idea, and at the time it didn’t really bear any relationto the reality of our daughter being that ill. (0601)no key person in charge, driving care,leaving parents feeling frustrated, stressed, and burdened with carecoordination for their child.Parents reported numerous professionals and services being involved in theirchild’s care and welcomed their involvement in planning. However, therewould often be What we really lack is a coordinator for [name of child]’s care, forsomebody, that central person, which – when [name of child] wastaken on by the palliative care team, that was what they were soldto us, that, “This is your key person, they will liaise with theright person, give advice. (0604)After an ‘initial flurry of lots and lots of stuff’ (0618) when setting up anAdvance Care Plan, parents described feeling somewhat abandoned and responsiblefor securing their child’s care and support, especially as plans were notupdated or reviewed regularly.We had all these people around us telling us all this stuff but theneverything just kind of disappeared, it felt like it was almost asquickly as it came. It was like: you’ve got your chair, you’ve got yourprintout with your exercises on it, fill your boots, you’re done, that’sit – go live your normal life. (0618)Where plans were updated, parents explained this played little part in theirchild’s care.People come round every now and again to update her care plan, but wedon’t see a lot else. (0604)Parents described mixed experiences of driving care. Parents of olderchildren, children with medical complexity, or those with increasing orchanging needs, often described the ongoing fight to get and maintain care.They highlighted that when navigating palliative care services, much oftheir time would be spent sourcing services that were not in existence.I do believe that junior members of staff haven’t got a blooming cluewhat it is. They’re petrified to follow it. But they need to look atthe care plan and follow that through. . .it’s not a known conditionand a well-trodden path, it’s very scary for all concerned andsomebody senior needs to take control. It’s not NICE ClinicalGuidelines that tell you what to do, it is experience that tells youwhat to do and yes, the guidelines aren’t even in place for thesecomplex children. (0606)However, the parents of babies described a very different perspective ofpalliative care, where they felt ‘very well supported and informed’ (0308).Factual information was readily provided, enabling parents to make difficultdecisions, without having to fight and advocate need.If we wanted information we could get it, but the decision, everyonewas quite clear in saying that there’s no right or wrong choicebecause it would be up to us to make that decision. So everyone wasquite clear on, here’s the facts, and it’s effectively up to you.(0103)Parents explained that having a plan took away fear of the unknown and brought asemblance of calm to a very difficult, sometimes frantic, situation.We welcome anything that is trying to plan round something that you can’tcontrol. . .. and his needs and his future is something we have nocontrol over whatsoever. Whatever will happen will happen. All that wecan do in that is try and plan as best we can for what we face or forthe situation we are dealing with. So having a plan in place that meansthat you have some semblance of control in a way. It’s always where youdon’t want to be and you always worry about it because you don’t knowwhat the outcome is going to be. . .But having a plan means that youknow at least people will do the right thing and it can happen quickly.You don’t have to explain everything. It’s I suppose reassuring.(0414)For some parents, talking about and processing the implications of having anAdvance Care Plan and what this meant, was difficult, but they acknowledged itwas an important step to take.I think I noticed right well we’re in hospital a lot more, options arestarting to run out and I was just having lots of thoughts. . .. She wasjust getting frailer, and I just thought if we were to ever be in asituation where she did need to be resuscitated or something I justthought there is just no way this tiny, tiny body is going to cope withthat, and I wouldn’t want to put her through more unnecessarily, Ididn’t think that that would be very fair to her. So, we spoke about itwith her palliative care doctor. (0020)Parents felt reassured that in planning an Advance Care Plan, this reducedworries about being blamed for doing something wrong, and would help mitigateany conflicts between themselves and professionals, particularly at end of life.Having a plan meant difficult, upsetting decisions about what to do had alreadybeen thought about and agreed.However heart-breaking that would be, it would be agreed and there’d beno one blaming you. (0510)But having a plan where another medical person has said, you do this,takes us out of having to have that fight. Which is really reassuringbecause you don’t want to be fighting with somebody over. . .you need togive the drug whether you agree with it or not. (0414)Parents perceived successful planning as key, enabling their child to be asindependent as possible, where needs were met ‘no matter how modest they are’(0601) and where all the family’s needs were considered, providing ‘veryholistic care’ (0308). Of key importance to parents, were plans for end of life,which considered the family as a whole.It’s for us as a family unit, not just this is what [name of child]needs, but this is what the family needs, and the family’s needs willhelp [our child] achieve her needs by providing her a calmer, happierenvironment without additional stresses and worries of everything else.(0601)NICE statement 2 – Infants, children and young people with alife-limiting condition have a named medical specialist who leads andcoordinates their careParents talked about many different professionals’ involvement inplanning/coordinating care, but having no one person or service co-ordinating ordriving care. In many cases they had to drive this themselves, finding itstressful, time-consuming, challenging and uncertain.My son would not have lived as long as he did without us taking someresponsibility, which I think is quite typical of a lot of families.There’s a lot of families where that is not something they can do but Ithink there is a lot of families that will do that and yes, weeffectively case managed our child. (0606)Having professionals who supported and empowered parents to make decisions abouttheir child’s care was highly valued, and eased the burden of acting as careco-ordinator for their child.We found that the paediatrician was extremely good at explaining thebenefits and the drawbacks of certain offerings, certain interventions.He explained to us in a way we actually understood. We found him to bereally excellent in making clear what our decisions would mean. Wealways felt that we were the ones in charge in making those decisions.We never felt pushed. . . Everyone was always really respectful of ourwishes. (0308)Being able to contribute to multiagency meetings was described as the main way tosort out uncertainty in the absence of a named co-ordinator, and provided themwith ‘more of a concrete plan about what things are available and what nextsteps to take’ (0601).NICE statement 3 – Infants, children and young people with alife-limiting condition and their parents or carers are given information aboutemotional and psychological support, including how to access itSome parents described how they had needed psychological support after theirchild’s diagnosis, but had not been offered this.For it to be more human as well, because the doctors are sometimes amatter of fact, and sometimes very clinical. The offer of, “do you needsupport afterwards”, as in parents, after the conversation say “do youneed to talk somebody”, because sometimes that gets overlooked,sometimes parents end up with a bombshell in their lap, their child ispossibly going to die, and they just get left to deal with it.(0601)Where parents were offered support and were able to have difficult conversationsabout end of life, they were able to develop their confidence, empowering themto look after their child and their needs.I suppose they’re helpful with my emotions as well as helping me tounderstand that I’m not useless, and it’s not just that they’re there,that they can do things, that I’m capable and I can do it too typething. They’ve helped me a lot with knowing that I can help him as well.(0415)Parents who were engaged with a hospice, described how they were supportedemotionally and psychologically, and encouraged by hospice staff to makepositive memories before and after their child’s death, which they valued. Theyalso took comfort from knowing they would always be part of the ‘hospicefamily’.So [name of hospice] said to us from the very beginning that theirsupport would involve from [name of child] life to her death. And itwould never expire, that support. So you know, being three at the time,if he [sibling] was ten and wanted to speak to someone, they would offerthat. It would always be available, we would always be a family.(0308)However, the pandemic, for some parents, was reported as a limitation to themaccessing emotional and psychological support.Everyone’s now only started to open their services up, so no, I haven’t[accessed emotional support]. I haven’t at all. But like I said, thereis groups, like [anonymised named group], there’s a parent forum, whichis nice because people can discuss their feelings and their emotions. .. but nothing, no groups to actually go to. (0616)NICE statement 4 – Infants, children and young people with alife-limiting condition are cared for by a multidisciplinary team that includesmembers of the specialist paediatric palliative care teamParents were drawn from a wide geographical area within England. Therefore,perspectives highlighted the misconnect between services in areas, and betweenareas of the country, professionals and parents.Parents described going through constant rounds of assessments to accessdifferent elements of care provision and support. They highlighted a lack ofcoordination and sharing of information between services and as a result havingto act as the lynch pin, which was frustrating and time consuming.When [name of child] was taken on by the [name of palliative care team],that was what they were sold to us, that, “This is your key person, theywill liaise with the right person, give advice.”. . . I’d CCed [name ofchild]’s neurologist into it [an email]. He basically asked, “Has anyonecome back to you?” And I was like, “No”. And then the palliative careteam gave me a mobile number that I could call. And I was a bit like,“Oh okay, I’ll just call them”. But I guess what I would expect from itwas, “Yes, I’ll liaise with this person, I’ll liaise with that personand coordinate that”, so I’m not chasing around all the different teams[child’s name] is under, the [names of 5 teams] and possibly a fewothers, that that pressure would be taken away. Because there’s a lot ofchasing and coordinating that I have to do, whereas I assumed that wasthe role of the palliative care team. (0604)For parents, this misconnect between services resulted in a lack of consistency,in and between areas. They recognised parents in other areas may not besupported by a team of multidisciplinary professionals, or have access to thesame services.I suppose maybe the hard thing is there are families out there that don’tget the referral through to the hospice and if we didn’t have thehospice I’m really not sure what we would do, which is obviouslydepressing to think about. And very depressing to think that there’s nogovernment funding for them. That they provide an enormous service thatis so exceptionally valuable for people in a very difficult position.That’s done entirely out of funding that they have to generatethemselves. And, whilst we are lucky that our hospice is able to providethose services, if we lived in another area, potentially we wouldn’t getthose services. (0414)In practical terms, the misconnect between different services, and lengthy waitscommissioning resources, meant a lack of urgency, which parents perceived asdetrimental to their child’s wellbeing. “This is why it needs to be done so urgently because otherwise she’sgoing to be stuck at home until she gets a wheelchair”, to me that wasthe most important thing, except for the fact that whilst she didn’thave a wheelchair, not only was she going to be stuck at home, she wasgoing to be stuck in bed because we had no equipment at home that wassuitable for her. (0618)Conversely, parents who reported co-ordination between services and teams workingtogether, described good palliative care support and a package of care that mettheir child’s needs from diagnosis until end of life.We all sit around the table, whoever needs to be there at the time, andthat has been really helpful, because a lot of the time, not so muchthrough health, but certainly through local authority type stuff, it isalways a fight, it is always a battle. . . But when you have a wholegroup of professionals sitting around a table, if five or sixprofessionals say they have got to have one, that single individualprofessional sort of feels accountable and thinks, “Well, if everybodyis going to sort of gang up on me, I better sort it”. So, they arehelpful in some respect. But it also keeps everybody on the same page.(0619)Parents experienced feelings of luck and guilt, about their reliance oncharitable funding to access specialist palliative care support and vitalequipment for their children.I had a bit of a chat with [name of hospice], and then that’s when Ifound out that [child’s name] hours came out of their charityfunding and not commissioned funding. So, I can’t say, “Oh well, Iwant more charity from you”. I just can’t say – it’s not a need.There are people at far greater need than we have. But I have goneback to children’s services to say, “There are huge gaps in the daywith . . . that are missing and really should be funded”. (0604)Some families factored this into their decision-making – whether their needsshould be prioritised over other children when resources were finite andsupport provided by a charity.It was like I didn’t want to take from a charity whose actual focuswas people who were properly on the breadline, whereas this feltlike a slightly different and easier to justify to myself that Iwasn’t being selfish by asking them if they would buy her this chair– I can’t remember what it’s called now, but honestly it was thebest piece of equipment that we ever got. . . It cost just over onethousand pounds, we would never have been able to buy it ourselves.(0618).I think that the hospice are fantastic.They are very good at saying all the services that they provide andchecking in with you. These are people who are regularly dealingwith end of life and yet they can remain positive. And that isastonishing. But it does make a massive difference to how we feelabout it. Because somebody smiling at you, somebody cracking a joke,just the world goes on. . .they do acknowledge what’s going on. Butthey work to make the best of what you have. (0414)They treated her like a person, a little girl. She was a little girland they could see the person inside the body. (0602)Parents valued support they received from palliative care specialists andstaff who worked in palliative care services, describing their skills inhaving difficult conversations, treating their child like a person withrespect and compassion. They also valued staff who provided their familieswith empathy, acknowledgement, familiarity, stability and sense ofbelonging,Parents described how professionals who did not work routinely with childrenrequiring palliative care, were less likely to show the same compassion andunderstanding. Some parents believed there was a lack of training, skillsand confidence among these professionals.Just because she’s palliative, she’s still alive and needs the care.Sometimes I feel a little bit that those services, they’re nottrying to make you feel dumped but they’re because they sort of hearpalliative, oh well, there’s probably not much we can do. I knowit’s logical but it can feel as if everything’s ending for yourchild almost before she’s died, she is still here, it’s caused a fewtears. (0510)NICE statement 5 – Parents or carers of infants, children andyoung people approaching the end of life are offered support for grief andloss when their child is nearing the end of their life and after theirdeathParents reported mixed experiences of sourcing bereavement support and differingopinions among professionals about when it should be offered. Some were told itwas too early for bereavement support, whereas others were asked if they stillneeded it after a year.I asked for bereavement support and I was told that it was too early. ..And then I eventually got in contact with the GP who put a referralthrough to the local hospital and my first telephone conversation withthem was, “Well, do you really still need it?” because it was a yearsince she died. (0602)Parents who reported good bereavement care described early support that enabledthem to make lasting memories of their child, both in the hospice or hospital,as well as psychological support that included the whole family. Parents wereparticularly appreciative of the ‘many little touches’ (0020) which helped tomake positive and precious memories out of their situation, before and aftertheir child had died.I think on the first or second day we were there we did footprints with I was able to have quality time with [name of child]. And Icould join in with all the activities as well. It was like being a mum,instead of being a carer. (0602)For all, having choices over preferred place of care was important and decisionswould be based on what each environment could offer the whole family. Someparents believed they would feel more supported with professionals around them,particularly when their child was at the end of life. They took comfort inknowing they could access the support of professionals yet in a homelyenvironment. This choice allowed them to separate memories and home life aftertheir child had died.So it separates that event from being in the family home (0601)I got comfort in that and the fact that people were there 24/7 to lookafter [name of child] and to provide the medication because it was when[clinician] said that they don’t provide 24 hour round the clock care.So basically they’re just 9:00 to 5:00, so if we got [name of child]home then we would have to do the care plan and the medications and Icouldn’t live with myself if I gave him the last shot of Morphine. Ijust never thought about it really, not until you’re thinking itthrough, the logistics of it, what that would mean. (0103)For others, they wished to receive this in their home as this was a familiarenvironment for their child and where they felt would be most comfortable.When it does happen, I’d like him to be at home, and have the support athome from the nurses, rather than in hospital or a hospice. I think it’sjust so the family, loads of family can come, it’s just nice for them tosee him at home and then he’ll be around his things, his bed, his chair,his own environment. I’d like him to be at home. (0616)However, parents acknowledged even though this was their preference, it might notnecessarily be able to be achieved. One parent explained having the option ofbeing able to have end-of-life care in the home, surrounded by family, and ableto spend as much time as possible with their child, was really important tothem.At first, it’s going to be as much as possible keep her at home. It’swhere she loves, it’s her domain, especially being blind as well, it’sfamiliarity in her own environment that really helps her but also Ithink the starkness of hospitals and everything, it’s not what youreally want. . . We’d rather prefer to do it at home unless it got to acertain point that it was really unmanageable so that one’s a little bitmore changeable. (0510)COVID-19 restrictions had influenced parents’ choices over preferred place ofcare. Some had chosen to be at home during their child’s end of life asrestrictions on visitors were more flexible, therefore allowing family andfriends to be present.But then [name of child] was really ill. March 2020, the COVID had juststarted, and we were given the opportunity of going to the local hospicein April, but it meant that I was there with her on my own and familyweren’t allowed to go and say goodbye to her or anything. And so that’swhy we went home. (0602)14This study was informed by Appreciate Inquiry,This study explored how the NICE quality standards featured in parentalexperiences of palliative care for children. Good palliative care is care thatis co-led and co-planned with trusted professionals working in palliative care,which is integrated, responsive and flexible, and which encompasses the wholefamily and enables parents to not only care for, but also to parent their childto end of life.Findings demonstrated considerable inequalities in access to, and provision of,palliative care, particularly 24/7 care, dependent on age and postcode. Parentsoften relied on charity funding for resources and support. Parents wanted, butwere not able, to focus on being a parent, without additional struggles offighting for access, budgets, and resources. The importance of introducingpalliative care to children and their families in a timely and positive manner,and developing plans for palliative care which focused on quality of life wasstressed. Parents highlighted a need to develop better communication betweenservices to ensure continuity, and to better educate professionals who workoutside of palliative care, on the meaning and nature of palliative care forchildren.27 andprovision of Mitchell et al.,28 and Knapp etal.29 palliative and end-of-life care for their children. Parentsstill have to fight the system to attain palliative care services,31particularly 24/7 care. The postcode lottery of receiving palliative care andsupport is still evident, as is the fragmented nature of services.30 Theseissues were found for all ages, however our study highlights these were moreprominent for parents of children living longer with complex healthcare needs.Parents needed to rely on charity funding to bolster support for their children,which did not fulfil gaps in care.3234 This was, and still is,exacerbated by the COVID-19 pandemic.35 There is still a pressingissue30 to meet the palliative care needs of children and youngpeople. With advancements in medicine and palliative care, children with complexconditions are living longer.3638 Therefore, issues ofaccess and availability of services needs to be rapidly addressed.Despite introducing the NICE quality standards in 2017, our study highlightsmarked differences in parents’ experiences of access to Aoun et al.,28 Our study shows when plans are co-constructed with achild’s care team, they have the potential to reduce uncertainty for families,conflict with health care professionals, and improve palliative caredecision-making for children, which is fraught with emotion, uncertainty andchallenge. There is a need to develop better communication betweenprofessionals, services and parents to ensure continuity of care, but also arecognition of parental expertise and experience.28 Despite NICE guidance,this aspect of care was still highlighted as not working adequately, ortranslating into practice, with parents advocating for a key person toco-ordinate and drive their child’s care.Findings stress the importance of introducing palliative care and Advance CarePlanning to children and their families in a timely, individualised and positivemanner.39 Findings demonstrateterminology such as ‘palliative care’ is often misunderstood, has negativeconnotations9 and is often associated with imminent death.41 Manyparents in our study also highlighted the lack of awareness from professionalsworking outside of palliative care about other terms such as ‘hospice care’ or‘respite care’. We suggest this is due to misunderstandings that thetrajectories of children with life-limiting conditions are the same asadults.42 As an intended enabler to accessing services, outlinedin the NICE statements, it would seem understanding of terminology could beviewed as a barrier to accessing good palliative care for children and youngpeople.4348Better educating health professionals who were not directly involved in theirchild’s care, on the meaning, and complexity, of palliative care, is importantfor ensuring better communication and support.49 Families who were engagedwith a hospice, stressed the importance of being able to access psychologicalsupport during, and after their child’s death, for as long as was needed. Whilstparents whose child had died in hospital, reported memory making activities,strong advocacy was needed to ensure this happened. Whilst this may be partlydue to the more intensive, clinical nature of a hospital compared to a hospiceenvironment,49 these activities support parents’ engagement with grieftasks and help maintain on-going connections with their child, and are importantfor parents of children of any age.50 Parents also found whenthey sought help from their GP for bereavement support, they were greeted withhesitancy51 as to if and when this should be provided. We posittraining in bereavement support for this population is needed for generalistprofessionals.51Differences in experiences of bereavement support were evident, particularlydepending of the age of the child and services which families were supported by.Parents of babies reported receiving extensive memory making bereavementsupport, which they valued.52 or home, enabled this. However, for the latter, havingaccess to 24/7 care was necessary in order for this to be an option forfamilies.Parents viewed their child first and foremost, as a child, rather than defined bytheir disability or palliative care needs, and wished to be supported to be aparent, particularly at the end of life, and enjoy time with their child. Beingable to achieve a family’s preferred place of care, whether this washospice14 which drew out what the features of good palliativecare are. The sampling strategy ensured that diverse experiences were included,and therefore information power was attained.24 We experiencedrecruitment challenges due to significant clinical burdens on sites and staff,due to COVID-19. Families indicated whilst they were keen to participate, theyhad many pressures and demands placed upon them, particularly in relation tohealthcare and childcare. Although we achieved a good sample, the voices ofparents using hospital palliative care (one site) are not well represented. Overthree quarters of the research participants were mothers, making it difficult todifferentiate between the experiences of fathers and mothers. Future researchshould explore the voices of parents using hospital care as well as genderdifferences in experiences. We also relied on parental report, and there aresometimes differences between parents and children about what matters.A strength of the study was robust analysis, informed by AppreciativeInquiryDespite the introduction of the NICE quality standards there are still considerablevariations in parents’ experiences of palliative care for their child, with manystandards not translating into practice. This study suggests that good palliativecare is care that is co-led and co-planned with trusted professionals working inpalliative care; is integrated, responsive and flexible; encompasses the wholefamily and enables parents to not only care for, but also parent their child to endof life. Good bereavement care starts before a child dies and includes opportunitiesto make memories for the family as well as providing emotional care spanning achild’s death. These findings have implications for informing evidence-basedpractice and clinical guidelines.