Despite increasing emphasis on integrating emergency care and treatment planning (ECTP) into routine medical practice, clinicians continue to delay or avoid ECTP conversations with patients. However, little is known about the clinical logics underlying barriers to ECTP conversations.This study aims to develop an ethnographic account of how and why clinicians defer and avoid ECTP conversations, and how they rationalise these decisions as they happen.A multisited ethnographic study.Medical, orthopaedic and surgical wards in hospitals within four acute National Health Service trusts in England.Thirty-four doctors were formally observed and 32 formally interviewed. Following an ethnographic case study approach, six cases were selected for in-depth analysis.Fieldnote data were triangulated with interview data, to develop a ‘thick description’ of each case. Using a conceptual framework of care, the analysis highlighted the clinical logics underlying these cases.The deferral or avoidance of ECTP conversations was driven by concerns over caring well, with clinicians attempting to optimise both medical and bedside practice. Conducting an ECTP conversation carefully meant attending to patients’ and relatives’ emotions and committing sufficient time for an in-depth discussion. However, conversation plans were often disrupted by issues related to timing and time constraints, leading doctors to defer these conversations, sometimes indefinitely. Additionally, whereas surgeons and geriatricians deferred conversations because they did not have the time to offer detailed discussions, emergency and acute medicine clinicians deferred conversations because the high-turnover ward environment, combined with patients’ acute conditions, meant triaging conversations to those most in need.Overcoming barriers to ECTP conversations is not simply a matter of enhancing training or hospital policies, but of promoting good conversational practices that take into account the affordances of hospital time and space, as well as clinicians’ understandings of caring well. The study’s fieldwork methodology allowed for rich data collection.Using an ethnographic case study approach, the researcher triangulated fieldnote data with interview data, developing a ‘thick description’ of each case, and thereby producing an in-depth analysis.The findings are limited by the study’s multisited design, which meant the researcher could not spend a substantial amount of time on one ward or in one National Health Service trust, thus limiting the temporal depth of the data collected.While the study was designed to include medical, orthopaedic and surgical ward areas, specific wards were selected by the local principal investigator in each site, such that findings were not directly comparable across hospitals.The researcher did not cover night shifts, and therefore, additional context for deferred and avoided emergency care and treatment planning conversations might have been missed.Emergency care and treatment planning (ECTP) discussions are among medicine’s most difficult conversations. Like advance care planning (ACP), ECTP processes focus on recording people’s preferences for their future care, in the event they might become too unwell to express their wishes. Key to ECTP and ACP processes are conversations between clinicians and patients about future treatment options. Despite increasing emphasis on integrating ECTP and ACP into routine medical practice in the USA, the UK and Canada,2 6 7et al’s8While studies have identified barriers to ACP, ECTP, and do not attempt cardiopulmonary resuscitation (DNACPR) conversations, little is known about the institutional logics—that is, the combination of clinical cultures and hospital structures and policies—underlying these barriers. One exception is Pavlish et al’sAlthough Pavlish This study’s aim is to develop an ethnographic account of how and why clinicians defer and avoid ECTP conversations, and how they rationalise these decisions as they happen. Extant ethnographic studies have focused on completed forms or conversations as a main object of research; however, as we recently found,et alWe approach our analysis of clinicians’ deferral and avoidance of ReSPECT conversations through a conceptual lens of care. Informed by recent sociological and anthropological theorisations of care as a mode of attentiveness cultivated and expressed through practice,As part of the larger ReSPECT Evaluation Study, we conducted a qualitative study focused on understanding when, why, and how hospital-based clinicians use the ReSPECT process in everyday clinical practice.The first round of data collection took place in two hospitals between August and December 2017. The observations followed a shadowing framework, with the study’s research fellow  following consultant clinicians  during ward rounds. After observing the clinicians, the research fellow conducted semistructured interviews with them, using a topic guide developed by the study team  as informed by the literature and by discussions with the study’s clinical coinvestigators. Analysing the initial data, we recognised that ReSPECT conversations were not confined to clinical encounters during ward rounds. Additionally, based on these preliminary results, A-MS, CH, FG and KE refined the existing topic guide and developed new questions  were consultant level, but the sample also included junior level (n=5) and middle-grade (n=7) doctors. Descriptive data concerning the interviewed clinicians appear in ReSPECT conversations were at the heart of the observations and interviews. Being present at the right place and time for a ReSPECT conversation meant regularly moving between assigned wards and checking with clinicians in key moments throughout the day . To facilitate this, in two hospitals, KE was given a pager; in another hospital, a research nurse working with KE provided his own bleep number to colleagues; in all hospitals, KE provided her mobile number to clinicians on the assigned wards. However, no technology could replace waiting on the wards. Indeed, the great majority of KE’s time was spent in waiting. While waiting, KE consistently took handwritten notes, exploring the mundane practices that unfolded around her, documenting staff members’ informal explanations of why certain conversations would take place and others would not, and weaving together a tapestry of interactions between structures, temporalities, and practices in which ReSPECT conversations occurred—or did not occur.This paper focuses on ReSPECT conversations that did not occur. We have previously described the range of ReSPECT conversations that occur following acute hospital admissions, and the factors that facilitate these conversations.The study was reviewed and approved by a National Research Ethics Service Committee. Observations were handwritten by KE and selected relevant excerpts were typed up for this analysis; the interviews were digitally recorded and transcribed by a professional service. All participating clinicians provided written informed consent prior to being interviewed. Their team members were aware of the researcher’s presence, and obtaining individual consent from them was unnecessary because they were not the focus of the observations and were not interviewed. Pseudonyms are used throughout this paper and identifying details have been omitted or altered. In keeping with ethnographic research practice, the findings are written in the first person, to acknowledge KE’s experiential and interactional roles in the case studies analysed.The ReSPECT Evaluation Study is supported by a patient and public involvement advisory group, which has provided feedback on the overall study design, consent models, qualitative data collection plans and initial qualitative findings from the first round of clinician interviews.‘ReSPECT is usually done on admission’ was the response I received, time and again, when asking about planned ReSPECT conversations in receiving wards. Following several days of observing, checking, and mostly waiting, I joined D1, an emergency medicine consultant, for an afternoon in Site B’s emergency department’s resuscitation area. Soon after, two young patients with major traumas were admitted, and the area was teeming with doctors, nurses, radiographers, porters and police officers. Amidst the ongoing team efforts at stabilising these two patients, other patients, including elderly people with various types of cardiopulmonary distress, were being brought in and taken out as soon as a bed became available elsewhere. At around 5:30 pm, there was a temporary lull in activity. D1 and I were sitting at the staff desk, and he turned to me and described the cases.I asked if he was planning a ReSPECT conversation, and he said no. The woman opposite me, he explained, was ‘in a bad way’, but her condition could easily be ameliorated through administering particular interventions, which would return her to the way she was before she came here. (Fieldnotes)The afternoon stretched into evening, and then night. By the time I left, I had been in the resuscitation area for 9 hours, during which, despite the area being at full capacity, only one ReSPECT conversation took place. When I met D1 for an interview, I mentioned the conversation we had at the staff desk, and asked if he could expand on his reasoning for not holding ReSPECT conversations with these patients. He returned to the case of the elderly woman:Well, actually, in her, in her case, the pathology that had caused all of that derangement was expected to be quite reversible (…) So if, for example, she was to go into cardiac arrest, it would make perfect sense to try and resuscitate her because there’s a good chance that we'd be able to.Likewise, D1 said, the trauma patients had ‘reversible pathology’ and were ‘not cases that we’d consider limiting treatment for or not doing CPR for’. He then mentioned additional cases of patients with drug and alcohol overdoses, where ‘certainly there'd be no reason to limit treatment for them because we, because we, we expect that resuscitation, and whatever level of care we might need to provide, has a good chance of a successful outcome’.While D1 cited reversibility of pathology as his main reason for not holding ReSPECT conversations, this was embedded in a broader contextual understanding of the ReSPECT process, its place in medical care, and the capacity to realise its potential in the emergency medical setting. After I mentioned another patient who did not have a ReSPECT conversation—a patient whom D1 identified as having reversible pathology, but also potentially reduced quality of life—D1 said:I find that when you're having a ReSPECT discussion there’s two reasons why you might have it. One is futility of resuscitation, and there was no perception that any of these cases had futility. And the other might be that there’s a quality of life issue, but I find that second one a bit harder because that’s a real judgement, and who should make that judgement? You know, really the patient is the best person to make that judgement, but is an acute situation the right time to have that when they're, they've got what’s almost certainly compromised mental capacity?As D1 explained it, when resuscitation is determined to be futile, this gives ReSPECT conversations a clarity and a raison d’être. Conversations about quality of life, on the other hand, become ethically slippery in the emergency setting. ‘To me’, D1 said, ‘it feels inappropriate to impose that discussion on somebody if it’s only about quality of life’. For D1, not having ReSPECT conversations with patients he expected would survive their hospital admission was an act of care, responding to and respecting patients’ vulnerabilities within the temporal, spatial and contextual pressures of an emergency admission. When I asked him, ‘[w]here would you say might be a good setting to have that kind of quality of life discussion?’, he replied, ‘[b]efore the patient gets ill’:in the cold light of day when they've got a bit of time and they’re well and they've got time to consider things, we’ve got their values and preferences fed into this discussion about what we might do in the event that things deteriorate.D1 added that, when a patient was admitted with a pre-existing form, he used it to inform discussions with the patient about treatment escalation. For him, patients’ values and preferences were key to making decisions about treatment escalation; however, the emergency department was not the right space in which to elicit values and preferences for the first time.I was about to leave for the surgical ward in Site A, to observe a pre-planned ReSPECT conversation, when I received an email from the consultant surgeon, S1, saying the conversation was not to be. Later that day, S1 and I met for an interview. I opened the interview by asking S1 how she decided to have the conversation with this patient, and why the conversation did not happen. S1 began by describing the patient’s condition. She had a terminal illness, S1 said, ‘[s]o we were gonna have the discussions about planning further treatments, further options and what’s agreeable and acceptable to her’. ‘And she knew that she was going to have the discussion today?’ I asked. ‘She knew that she was going to have the discussion today’, S1 said,but, unfortunately, she’s been in pain all night and had a bit of disruption on the ward and she’s a bit tearful. (…) she just seemed a little bit in the wrong place mentally to have that discussion. So I spoke to her and said that I would have it with her maybe tomorrow, with her husband, and, and she said she would like to have 24 hours of thinking and, and have it tomorrow.I asked if the patient knew where her condition was heading, and S1 said the patient knew she was dying. Knowledge, however, did not equal readiness, and S1 deferred the conversation as a responsive act of care.This deferred conversation hinted at the wider phenomenon of non-conversations on surgical wards. ReSPECT conversations rarely happened on surgical wards; the loss of this conversation, after weeks of waiting to observe one, meant that I completed my fieldwork at Site A without observing any ReSPECT conversations on the surgical ward. When I asked S1 if surgeons were particularly reluctant to have these conversations, she laughed and said:Yeah. Definitely. Definitely. Because our patients very rarely die. (…) they’ll come in with something we can treat and we send them home. So I, I think surgeons specifically don’t deal with death very well, we see that as failure, we see that as failure of us, particularly in someone who dies in the post-operative period, we find that very difficult.‘And so when you do have a difficult conversation’, I asked, ‘how does that make you feel?’Well, it’s one of those situations that you, you, you do, you dread it, you absolutely dread it before you’re going in, you, because it doesn’t come naturally, you, you, you can occasionally stumble over your words and make it sound less fluid than you want. You can say the wrong thing, use the wrong terminology, which is us falling back to our medical knowledge. So it, it, I think there’s a lot of anxiety going into that conversation and a lot of anxiety afterwards.With the death of a patient deemed a professional  failure, and with ECTP conversations perceived as an acknowledgement of impending death, S1, like other surgeons I interviewed, described these conversations as requiring a skillset surgeons did not have. As described by S1, ECTP conversations challenged her professional competence, and she found herself on an unsure interactional footing when initiating these conversations. The dread she described, however, related not only to stepping outside a professional comfort zone, but also—and centrally so—to fear of upsetting patients, and thereby caring for them wrongly or inadequately.The acute medical unit (AMU), where, according to clinical staff, most ReSPECT conversations occurred, was a cornerstone of my observations in Sites B and C. Yet, despite spending considerable time on these wards, I only observed two conversations. In part, this could be attributed to coincidence—to consultants forgetting to call me into a conversation, to no new patients being admitted over the course of several days, to my being on another ward just as a ReSPECT conversation was taking place, to an on-call doctor assiduously conducting conversations during twilight hours (9 pm to 9 am). But coincidence only went partway in explaining my sparse observations. In Site B, I spent the majority of my observation time at the AMU, including three consecutive days of shadowing lengthy post-take ward rounds where no ReSPECT conversations took place. It was on this ward that I experienced most acutely how everyday infrastructural contexts interweave with decisions about ReSPECT conversations.Joining a sizeable ward round entourage of six or seven junior doctors, medical students and a pharmacist, I followed the consultant, D2, as he made his way from the hot desk to the patients’ bedsides and back again. With three chairs and three desktop monitors, the hot desk was nearly always overcrowded in the mornings, with staff members playing a seemingly endless game of musical chairs as they attempted to view patients’ records on the monitor while juggling two ring binders for each patient . Like most of D2’s entourage, I spent most of the ward round standing in the misshapen semicircle that formed around him as he presented each case. With the corridor thus congested, I frequently found myself moving aside in order to allow staff members to walk through. This embodied experience of resource limitation was magnified when I followed D2 to the first board round of the day, where I wrote:We’re entering the MDT room which is standing room only. The day room is not available (there’s an interview there). People are moving chairs and tables to be able to close the door. (Fieldnotes)D2 and another colleague mentioned ReSPECT when presenting four patients, at least three of whom were classified as end-of-life. Of these patients, three had a form in place, and D2 said a palliative team should be called in for the one who did not. ReSPECT, then, was highlighted as a key form designated for, and identified with, the terminally ill. Having attended this board round, I was surprised when, the next day, at a board round led by another team, ReSPECT received no mention, despite some patients having multiple comorbidities. ‘The main focus’, I wrote in my notes, ‘was on deciding which patients could be discharged, when, and which would need a bed on a receiving ward’. Bed capacity was a main concern in the board round that followed, too. Led by D2, the board round was interrupted when a nurse entered to ask which patient could be moved to another ward, so they could move another patient into AMU, urgently. The next day’s post-take ward round was, in D2’s words, ‘chaotic’, and his long list included new patients alongside several others who were very unwell. No ReSPECT conversations took place during this ward round, and no prospective conversations were mentioned during the board round that followed, though patients with organ failure were reviewed.When I interviewed D2, I asked why no ReSPECT conversations took place. ‘In our last three days’, he said, ‘luckily there was no sick patients who needed a ReSPECT form or the people who were sick already had one in place (…) so I didn't have the chance to discuss’. D2 defined ‘sick patients’ as those ‘who were going to imminently die by the looks of things’. His equating of ReSPECT with an immediately terminal prognosis was linked to the pace of clinical practice at the AMU. When I asked him if high patient turnover impacted on ReSPECT conversations, he spoke about the extended time for discussion on the receiving ward where he also worked, and then said:I agree, in acute there is less of an opportunity to discuss because the turnover is so huge and patients move so rapidly to different wards. (…) But if, like, we're in a situation when we think patient is acutely unwell, he is probably not going to make it, he is likely going to pass away in next couple of hours, so then of course we do discussions with patient families.Initiating a ReSPECT conversation at the AMU involved a triaging process, in which patients became candidates for ReSPECT if they could not be stabilised and moved to a receiving ward. The logic behind limiting ReSPECT conversations to those in immediate need was captured in D2’s description of two types of patients with whom ReSPECT ‘needs to be discussed’. In the first group, were ‘patients (who) already know that they've got an irreversible, advanced, incurable disease’. Discussing ReSPECT with patients from this group, D2 said, was ‘easy’. The second group, however, presented additional challenges:Now, doing ReSPECT form in patients who have been suddenly been diagnosed [with an incurable] illness is challenging (…) because till yesterday they were fine and now we're telling them you've got an incurable illness. So sometimes my approach in these situations, if they're not going to die imminently, I normally give them time. (…) Maybe once, two, three sittings and often involve multiple teams.Easing patients into a ReSPECT discussion took time and involved a series of conversations with multiple staff members. However, this stretched the scarce temporal, spatial and staff resources on the ward. Unable to give more AMU patients the time and careful discussions they needed to come to terms with their prognosis and treatment plans, D2 therefore reserved ReSPECT conversations for those at the end of life.Following a board round on a surgical ward in site B, I was sent to the critical care ward area along with a middle-grade surgeon, S2, and a junior doctor. When S2 was paged and asked to see a patient at the high-dependency unit (HDU), the consultant said I should join him, as this was a more promising location for a ReSPECT conversation. Walking and talking on the way to HDU, S2 said that,during the day, people are running around like headless chickens, trying to fix people. So if a patient is ‘unsalvageable’, they leave that conversation for the on call team after hours. (Fieldnotes)At HDU, I waited while S2 and the junior doctor examined a patient. When they emerged from behind the curtain, S2 said he didn’t bring me into the conversation because ‘they were discussing chemotherapy with the patient, so he’s a few steps away from a ReSPECT conversation’. From the HDU, we walked to the intensive therapy unit (ITU), where the junior doctor told me the first patient was ‘just a normal patient’. I waited, standing in the corridor and writing notes. Then, in what turned out to be a critical moment in my observations, S2 took me to see a patient at the end of the corridor. He told me this patient was dying of metastatic cancer and in need of a ReSPECT conversation, but that this would be a discussion with the patient’s relatives, as the patient was ventilated.I asked if her family was around, and he said let’s see. We walked toward her bed area and the curtain was drawn. I stopped before reaching the bed area, and [S2] approached and moved the curtain lightly, with one finger. He looked inside, let go of the curtain, and said, ‘too late’. I asked [if] she’s still there, and he said she’s just died, and she’s covered. As we walked back, he told me it’s a sad way for a person with metastatic cancer to die. He said he was called by an ITU doc yesterday (…) and knew he needed to have a ReSPECT conversation for this patient, but then other patients’ treatment needs got in the way, and the conversation was postponed and then didn’t happen, eventually. (Fieldnotes)Two days later, when I interviewed him, S2 referred several times to ‘the window for ReSPECT discussion’. With this patient, he said, this window did not exist. He explained that, as a surgical patient, she had been admitted for a reversible condition. So, although she also had metastatic cancer, it was ‘not appropriate for people [surgeons] to have that conversation with her’. As her condition deteriorated and she was admitted to ITU, she lost consciousness and this sealed any possibility for discussion. However, the lack of a discussion ‘window’ was not the only reason this patient died without having had a ReSPECT discussion. Explaining why ReSPECT conversations were infrequent on the surgical ward, S2 said:…in a surgical speciality, for instance, if you’ve got 60 patients on the ward, life-threatening issues, which are recoverable or treatable X number, and the terminally ill patient unfortunately will go down in the priority of that clinician’s time allocation that day.I reminded S2 that, when we went to see the patient, he told me he wanted to have a ReSPECT discussion for the patient earlier, but ran out of time. He confirmed this, saying that…in that time I was here till 8 o’clock with other things, so it kept being prioritised lower down on the priority [list].A second, key reason for deprioritising ReSPECT conversations concerned clinical skills. To become a consultant surgeon, S2 said, you need many years of training. However, surgeons were not equally equipped to have difficult discussions with people whose lives they could not save:even though their [patients’] emotional need, psychological need, all sorts might be very high, desperately suffering person, but you put them in a situation where the group of people delivering [the] service are not trained to deal with it, not equipped to deal with it, so that goes down in the priority.S2 prioritised caring for patients who could engage his training—patients for whom he could care professionally. Prioritising ‘salvageable’ patients at the expense of terminal patients, therefore, was not merely a calculated allocation of resources to those most likely to survive, but a reflection of S2’s concerns over providing the care he had been trained to give.This logic also informed S2’s decision not to have a ReSPECT conversation with the first patient he saw at the HDU during my morning of observations—the patient with whom he discussed chemotherapy. After describing the patient’s terminal diagnosis and short prognosis, S2 said:So, by definition, if you go with the lectures about palliative care, ReSPECT and all that, that’s the time to have the discussion. But go back to the same thing. He was well one week ago, he was working. Now he has got [terminal] cancer. So I didn’t feel that it right for me to talk to, is right for me to then talk to him about how do we end this, how do we plan for expected decline in his function.Notably, in his response, S2 juxtaposed ‘lectures about palliative care’ with the reality he confronted as a surgeon. He implied that recommendations about timing ReSPECT conversations were doubly detached from his clinical practice, reflecting classroom-based rather than practical knowledge, and grounded in a specialty other than his own. Facing this patient, S2 felt that palliative care standards clashed with his own ethics of care, which he described as informed not only by the patient’s temporal distance from the death toward which he was heading, but also by his temporal distance from the regular life he left behind. ‘He will be shell-shocked if I told him that, ‘So you will, you know, be dead in six months’’, S2 said. He added that, on numerous occasions, he had overheard patients making plans they would not live to fulfil:No, I didn’t tell them not to plan those things, because I felt, I felt whatever false hope that they are carrying is probably better than dash it all. Is it because I don’t have the time, I don’t have the skill? I don’t know.In this apparently ambivalent explanation, S2 wove together concerns over patients’ feelings, experiences of time pressure, and insecurities over lacking the necessary conversation skills. Running through these was a central concern with caring adequately—at the right moment, with enough time, and with the right skills. Without sufficient time and skills, the right moments for ReSPECT conversations eluded S2, such that non-conversations became acts of care.Early in my observations at the geriatric ward in Site A, I experienced a day of waiting that ended with three deferred ReSPECT conversations. The afternoon began with the doctor in charge, D3, telling me that a conversation with a patient’s family was expected. Soon thereafter, D3 explained the conversation would be postponed because the patient’s relatives expressed ‘disagreements with each other and with the clinical team’. This conversation was to be the third in as many days. As I wrote in my notes, D3 explained that ‘the conversation often ends up taking three or four days because they want to include all family members, but relatives tend to disagree and have unrealistic expectations’.More than two hours after this attempted conversation, D3 called me into her office to observe a ReSPECT phone call with a patient’s son who visited 2.5 hours earlier, but whom she could not meet because she was caring for other patients. She gave me the single chair in her small office, sat on the desk, and made the call, which went to voicemail. D3 then said she will wake up a patient with whom she wanted to start a ReSPECT conversation. However, on exiting the office, D3 was confronted by another patient’s relative. In rather urgent tones, the relative asked D3 to have a look at the patient. She agreed, turned to me, and said she’ll be back. About half an hour later,[D3] came back and told me I should probably leave now as well. Her shift was over and her time was taken up by tending to [the patient]. She wasn’t going to start a ReSPECT conversation now—she’d missed her window. (Fieldnotes)As the only doctor consistently on the geriatric ward, D3 was frequently called in multiple directions at once. She was not in the habit of deferring ReSPECT conversations—on other days, she called me to observe conversations she held with patients’ relatives. However, weighing the immediacies of patient care against the sometimes-multiple, uncertain temporalities of ReSPECT conversations, she prioritised treatment delivery.D4, a geriatrics consultant, was another clinician I observed on the geriatric wards in Site A. Over the course of 3 weeks, I repeatedly checked with him—before, during, and after ward rounds—to see if a ReSPECT conversation was expected. After my final attempt at observing a conversation, D4 let me know that, again, no ReSPECT conversation was on the horizon. At the interview, D4 offered several reasons:Firstly, some of the patients, those conversations had, had already happened earlier in the admission. (…) And if it’s happened once then duplicating that sorta conversation, which can be a difficult conversation, is clearly unnecessary, potentially distressing. (…) There’ll be some patients where that conversation wasn’t necessary (…) And there’ll be some patients where the conversation was a good thing to have, hadn’t happened yet. But because of the timing of the ward rounds it wasn’t the, the right time to have that conversation.D4’s response centred on emotional management and timing. Identifying ‘the right time’ for a conversation hinged on multiple factors. Key to appropriate timing, D4 said, was aligning ReSPECT conversations with family visits. Ensuring the involvement of family members, however, required a careful balance of timing and emotional management:unless it’s clinically urgent, I don’t want to make it an overly dramatic thing, ‘cause that then attaches more weight to it. So I prefer to be opportunistic. So, if we know family are coming, or are likely to be coming, I’d rather wait for them to come.Whereas other clinicians staged ReSPECT discussions to convey their seriousness—through scheduling a conversation in a private room with a patient’s relatives—D4’s approach was to disinvest the conversation of its impact, smoothing it into the patient’s wider care. This meant that, sometimes, ReSPECT conversations did not happen on time, or did not happen at all. Ideally, D4 explained, he would have a ReSPECT conversation with nearly every patient, but ‘society isn’t quite ready for this to be a normal, a normal conversation to happen at all times’. D4 acknowledged the gap between his ideal practice and current approach to ReSPECT conversations. However, in deferring or not holding ReSPECT conversations to avoid distressing patients and their relatives, he aimed to offer a careful response to patients’ and relatives’ perceived lack of readiness.When I began my observations at the surgical ward in Site D, the consultant in charge told me that ReSPECT conversations usually took place later in the afternoon. Unlike the brief, routine, CPR-focused conversations that frequently took place on acute medicine wards in Site D, ReSPECT conversations on the surgical ward were complex, and involved planning and scheduling with patients and their relatives. I therefore came back to check every day for anticipated conversations. In the first week, I observed one ReSPECT conversation. In the second week, on my third day of repeated checking with the ward, the consultant surgeon, S3, walked past me in the corridor and said there might be a discussion later that day, ‘around 3’. I arrived just before 2.30pm but S3 said they would not be having the conversation after all. I understood his reluctance. For an entire week, this conversation had been pushed from one day to the next. It was to be a follow-up ReSPECT conversation with a patient who asked for more time. However, days passed and the patient did not want to revisit the discussion. Realising this follow-up conversation was not to be, I scheduled an interview with S3, to discuss why this conversation did not take place.I returned to the ward at 4:45 pm, having scheduled the interview for 5 pm. S3 asked me to wait 20 minutes. I stood at the nurses’ desk and observed dinner being assembled on trays while S3 gave instructions over the phone about a patient’s continued treatment. Following this call, he turned to me and apologised, saying he had just been called to another level. He returned about 40 minutes later, apologised again, and said he needed another 10 minutes. I stayed at the nurses’ desk, where two junior doctors and a surgeon were ordering a CT scan, while S3 consulted with his colleagues about a patient in the adjacent, open-doored, doctors’ office. S3 then walked out and invited me to join him at the doctors’ office. He sat down to type patient notes and talked to me throughout, counting down the number of patients for whom he still had to write notes. His note-writing was frequently interrupted by questions and consultations with other colleagues—some of which led to further documentation.After about an hour of note-taking, S3 asked me to join him as he went to check on a patient on another ward. There, we met a junior doctor from the surgical ward, and, after S3 checked on the patient, we all walked back together. It was after 6:30pm.I asked if it’s a typical day. [S3] said they try to finish by 6 but the [junior doctor] said it was typical. He said there’s a never ending mountain of things and that there’s always something to fill the time. I asked him if the incessant need to write notes on [the hospital’s digital system] contributes to that, and he said definitely, that it’s a defensive exercise, mainly to avoid litigation, because if you don’t write it, it didn’t happen. To clarify, I asked him if notes are more about litigation than about informing colleagues, or a mix, and he said it’s a mix (but mainly about litigation). (…) I asked if ReSPECT is just another form and he said he doesn’t do ReSPECT, his seniors do, but that when something like this comes up on [the hospital’s digital system] it’s more like ‘another thing to do’ rather than an important thing I have to take care of. (Fieldnotes)It was nearly 7 pm when my interview with S3 began. Wary of being called in for another task, he suggested we have the interview at the downstairs café, though he had his phone at the ready for calls from the ward. This was a 12-hour workday, he told me, ‘[b]ut, you know, we have our duties, our duty is to patients, we want to do everything… and ensure that all jobs are done before going home’. I asked S3 why no ReSPECT conversations took place in the last three days. He began by speaking about new admissions in general:So when we are admitting the new patients, well, we, we don’t ask them about if they want to be resuscitate[d] or not. Well, we, on the basis of our clinical findings, I mean their medical history, reason for admissions, we are mostly assuming that the patient who is not, who is relatively young, has no cancer, active cancer, or who has an active cancer, but was admitted for the operation… wants to be fully treated, so receive active treatment for CPR also.ReSPECT, S3 explained, comes into play if ‘it turns out that this cancer is inoperable’. In those cases, where patients are transitioned to ‘palliative measures’, the goal of the discussion is to establish a DNACPR recommendation. However, he clarified,just before that we have an active discussion with the patient and his family about how it looks like, how it corresponds with his treatment, what are the, what are the outcomes of our treatment, of diagnosis, so it’s not a, a, a short talk, it’s usually a long talk in which we are discussing what was done, what needs to be done, what can be done and how it affect[s] the patient life, quality of life and life expectancy. (…) it’s not an easy talk.S3 said patients’ relatives often worry that a DNACPR recommendation would lead to broader cessation of treatment, and that much of the ReSPECT discussion is about establishing ‘boundaries’ of treatment and clarifying what will and will not be done. This process of clarification, he said, ‘takes time’:So that’s why we don’t instigate this, this, this type of discussion to every patient ‘cause, as you notice, we are usually out of time.I mentioned the patient whose conversation was deferred, and asked why he decided not to have this discussion. ‘[W]e knew that these kind[s] of discussion are very, very delicate ones, but we need to have also the proofs for that’, he said. Although the patient was visibly deteriorating, and although the patient’s condition had been discussed as terminal in the initial ReSPECT conversation, S3 decided to wait for additional laboratory results that would confirm the patient’s prognosis. With test results used to remove doubts about the boundaries of treatment, S3 aimed to remove a layer of uncertainty from this already-fraught ReSPECT conversation.Evidence and overwork, therefore, were in dialogue. S3 described ReSPECT conversations as invariably lengthy, detailed and complex. His focus on laboratory evidence, as providing much-needed scaffolding to ReSPECT conversations, conveyed the weight he placed on getting each conversation ‘right’. His lack of time, however, meant that most patients did not have these conversations. Thus, as S3 described it, the deferral or avoidance of conversations that could not provide detail, clarity and optimised results was a careful choice.Centring on ReSPECT conversations that did not happen, the ethnographic case studies have revealed multiple strands of reasoning that underlie the seeming silence of deferral and avoidance. For the clinicians who took part in this study, concepts of caring through silence—through not speaking to patients and their relatives about ECTP—emerged in the interlocking of temporal, emotional and structural resources. These deployments of silence, notably, diverged from notions of ‘silence as an element of care’,et al capture the clash between care practices and institutional temporalities, writing that, while care requires flexible temporal boundaries, responsive to individual needs, this flexibility becomes fraught when confronted with institutional time, which calls for the maximisation of efficiency under pressure.For the participating clinicians, concerns over caring well interwove with an appreciation of ReSPECT conversations as substantial and consequential. Conducting a ReSPECT conversation carefully meant attending to patients’ and relatives’ emotions and committing sufficient time for an in-depth discussion, while also taking contextual factors—such as the affordances of the ward—into account. As such, plans for caring well through a ReSPECT conversation were often disrupted by issues relating to time. Buse Decisions not to hold ReSPECT conversations were situated not only temporally, but also spatially. As Pink has argued, care is emplaced, that is, situated within a set of local processes, materialities and practices that give it shape and meaning.Notably, the participating doctors’ reflections centred on deferred conversations that concerned gravely ill patients. Conversations that could have been held with patients who were generally well were left largely unacknowledged. This captures a chasm between the intended use of ReSPECT and its implementation in practice. Whereas ReSPECT was designed as a universal process that confirms treatments to be provided, and not just treatments to be withheld,Our findings suggest that the future implementation of ECTP initiatives would benefit from insight into the clinical logics that inform ECTP conversations and non-conversations. Like earlier studies that identified barriers to DNACPR, ACP and ECTP conversations, our study found that time pressures, concerns over patients’ and relatives’ emotional reactions, and insecurity about communication skills contributed to doctors’ deferral or avoidance of conversations.While the study’s ethnographic methodology allowed for rich data collection and triangulation, the study’s design also had several limitations. A multisited ethnographic approach was selected to evaluate the ReSPECT process in diverse ward areas across NHS trusts. However, due to this approach, the researcher could not spend a substantial amount of time on one ward or in one trust, thus limiting the temporal depth of the data collected. Had the researcher spent an extended period on one ward, richer insights about the day-to-day unfolding of ReSPECT conversations within broader clinical practices might have been developed. Additionally, while the study was designed to include medical, orthopaedic, and surgical ward areas, specific wards were selected by the local principal investigator in each site. This meant that observations varied across the hospitals, with some PIs selecting acute wards, such as the emergency department, and others selecting receiving wards, such as geriatrics. This led to diverse findings within the sample as a whole, but due to this diversity, findings were not directly comparable across hospitals. Finally, it is important to acknowledge that the researcher did not cover night shifts, and therefore, additional context for deferred and avoided ReSPECT conversations might have been missed.Drawing on a multisited ethnographic study conducted in England as part of the larger ReSPECT Evaluation Study, we analysed why hospital-based physicians and surgeons deferred or avoided ECTP conversations. We found that deferral or avoidance of ECTP conversations was driven by concerns over caring well for patients and their relatives. Importantly, the findings highlight the nexus of clinical time and care. The participating doctors conceptualised a careful ECTP conversation as one that required attending to patients’ and relatives’ emotions and committing sufficient time for an in-depth discussion. However, because conversation plans were regularly disrupted by timing and time constraints, doctors often deferred these conversations, sometimes indefinitely. Additionally, issues related to time manifested differently across ward areas: whereas the surgeons and geriatricians deferred conversations because they lacked the time for detailed discussions, or because they missed ‘windows of opportunity’ for discussion, the emergency and acute medicine clinicians deferred conversations because the high-turnover ward environment, combined with patients’ acute conditions, meant triaging conversations to those most in need. The findings highlight the importance of considering clinicians’ logics of care in the future development of ECTP initiatives. Based on these findings, we suggest that overcoming barriers to ECTP conversations is not simply a matter of providing individual training or changing hospital policies to encourage or mandate these conversations. Rather, short of infrastructural change that enhances human, temporal and spatial resources, future ECTP initiatives would gain from promoting good conversational practices compatible with clinicians’ logics of care, and with the institutional affordances where these logics are put to work.


Grit and resilience are significantly related to mental health, academic performance, and QOL in children with RD. This suggests that interventions to improve grit and resilience may lead to positive benefits.Prior studies have suggested that grit and resilience predict both academic and career success. However, these qualities have not been examined in children with reading disorder (RD). We therefore investigated whether grit and resilience were associated with anxiety, depression, academic performance, and quality of life (QOL) in these students. This 3-year longitudinal cohort study included 163 participants with RD from 3 schools. Evaluations were completed by parents and/or teachers every 3 months. The Grit and Resilience Scale was adapted from the 10-item Connor-Davidson Resilience Scale and the 12-item Grit Scale. Outcome measures included anxiety , depression (Short Mood and Feelings Questionnaire), academic performance, and QOL (Pediatric QOL Inventory 4.0). Multivariate linear regression models (adjusting for age and sex) assessed the associations at baseline. Repeated measures analysis using mixed-effects models assessed the relationship longitudinally. There were statistically significant associations between grit and resilience and all outcomes at baseline and over time. After adjusting for age and sex, improved grit and resilience was associated with decreased anxiety (β =  − 0.4, The online version contains supplementary material available at 10.1007/s11881-021-00238-w. The term “grit” was defined as “perseverance and passion for long term goals” in a widely quoted 2007 study by Duckworth et al. , b. GritResilience, on the other hand, focuses on the “dynamic process that enables positive adapting to stressors,” or the ability to “bounce back” after adversity or failure , all except one study , and overall quality of life, both at baseline and over time in children with RD. We also had an exploratory aim to see whether grit and resilience itself changed over time on average in this cohort.We sought to create a new scale for measuring grit and resilience upon advice from the schools’ teachers who felt that many items in the existing scales measuring grit and resilience separately were not relevant to the RD population  or were not age-appropriate for this sample . Our new Grit and Resilience Scale borrowed items from two validated scales for grit  to complete self-reports of multiple surveys at regular intervals throughout the study. In contrast, the previous studies using self-reported measures had consisted of typically developing children and older age groups  who were more capable of understanding and accurately completing these scales. We also hoped that the parent and teacher reports would shed light on whether the grit and resilience a child displayed varied depending on the environment (home vs. school) and would also reduce social desirability bias that is often seen as a drawback of self-reports.Therefore, the primary purpose of this cohort study was to investigate whether parent and teacher reports of our newly developed grit and resilience scale were associated with anxiety, depression, academic performance, and quality of life, both at baseline and over time, in children with RD.The study was approved by the University of California San Francisco (UCSF) Committee on Human Research on 09/28/2016. Questionnaires measuring grit and resilience and other outcome factors  were filled out by parents and teachers approximately every 3 months in an academic school year, up to ten times. Data was collected through an online secure research platform called eBit (evidence-based intervention and treatment) on the following dates: April 2017, June 2017, October 2017, January 2018, May 2018, November 2018, April 2019, June 2019, October 2019, and February 2020.One hundred and sixty-three participants (aged between 6 and 16 years) were recruited by email from three specialized education schools for children with RD in the San Francisco Bay Area, CA. All participants were required to have RD to be enrolled in the schools and the study. The local schools were all recognized as schools that specialize in the education of children with dyslexia and other forms of RD. Recruitment for participants was ongoing throughout the study period, resulting in staggered entry over the 3 years. This led to differential follow-up times for the participants, with the earliest participants having up to ten timepoints of measurement   and some items were reverse-worded to maintain scoring consistency . For instance, item #8 from the Grit Scale “I have difficulty maintaining my focus on projects that take more than a few months to complete” was changed to “Uses strategies and tools to regain or maintain focus,” or item #9 from Grit Scale “I finish whatever I begin” was adapted as “Takes action to complete challenging tasks.”Seven items in the new Grit & Resilience Scale were adapted from the 10-item CD-RISC. Among these, 4 items were worded almost identically, with the minor changes reflecting the change in rater. For instance, item #1 from CD-RISC 10 “I am able to adapt when changes occur” became “Adapts when changes occur.” The other 3 items were thematically similar and were therefore worded differently. For instance, item #9 from 10-item CD-RISC “I think of myself as a strong person…” was reflected in “Expresses positive self-perception” on the new scale.The parent version of the scale contained 17 questions , with a possible final score range of 0–68. Among these, 5 questions were from the Grit Scale, 7 questions from CD-RISC (with 2 questions with overlapping themes that therefore were not duplicated), and 7 additional questions from the teachers. On the other hand, the teacher version contained 21 questions , with a possible final score range of 0–84. Among these, 5 questions were from the Grit Scale, 7 questions from CD-RISC (with 2 questions with overlapping themes that therefore were not duplicated), and 11 additional questions. A higher score indicated better grit and resilience. Both versions of the scale are reported in the Appendixes 1 and 2.p < 0.001) and teacher-reported measures having an r of − 0.73 (p < 0.001). SDQ was obtained for all participants at all timepoints. We tested for divergent validity using the Kiddie Sluggish Cognitive Tempo Rating Scale (K-SCT) . However, the low magnitude of the correlation coefficients and the fact they are significantly lower than the convergent validity correlations  suggest that the Grit & Resilience Scale measures unique socioemotional traits that is different from SCT. K-SCT was introduced to the study in April 2019 and was measured for all existing participants from that point forth.The Grit & Resilience Scale was tested for its psychometric properties. It showed excellent internal consistency at baseline, with the parent-reported scale having a Cronbach’s alpha of 0.91 and the teacher-reported scale having an alpha of 0.94. It also showed good test–retest reliability, with the parent version having an intraclass correlation (ICC) of 0.72 (95% CI: 0.65 to 0.78) and the teacher version having an ICC of 0.75 (95% CI: 0.70 to 0.80). We tested for convergent validity using the total difficulties score of the Strengths and Difficulties Questionnaire (SDQ), which has been used to measure resilience in a number of cohort studies . Considering that the Grit and Resilience Scale measures several related but somewhat distinct concepts , this was not surprising. Nevertheless, we opted to use total scores in all subsequent analyses due to the relatedness of these concepts  from April 2017 to June 2018. It is a 16-item validated scale measured by teachers on a 4-point Likert scale that evaluates a student’s generalized and social anxiety over the past 3 months. Items include “This child worries about things”  and “This child seems very shy” , with the option to answer from “not at all,” “sometimes,” “often,” or “a great deal.” The final score for SAS-TR was calculated by taking the sum of each individual items’ score, with a possible score range of 0–48. It has been reported to have high internal consistency and has shown evidence of convergent and divergent validity  was used to measure anxiety from October 2018 to the endpoint of data collection for this study. The brief SCAS has both parent and teacher versions and was designed to assess symptoms of DSM-IV anxiety disorders in children. Examples of items include “Worries about things” and “Worries what people think of him/her,” with possible answer choices being “never,” “sometimes,” “often,” and “always.” It has a final score range of 0–24, which is calculated by taking the sum of the individual items’ scores. The measure is known to have good internal consistency, agreement among reporters, and convergent and divergent validity , which was evaluated by parents. This is a validated scale that assesses how a child has been feeling lately and is a screening tool for depression in children and young people aged 6 to 19. The scale was introduced from November 2018 onwards. It is a 13-item questionnaire, with items such as “S/he felt s/he was no good anymore” and “S/he hated him/herself,” that are answered on a 3-point Likert scale: “not true,” “sometimes,” or “true.” The final score range is 0–26 , with a higher score indicating increased levels of depression. The SMFQ has been shown to have good internal reliability , with the option to indicate the student’s level for that academic criterion on a Likert scale .Each academic progress scale was scored in a similar manner, where the final score was the sum of each individual items’ score in the scale. This sum across multiple domains was done in order to get a holistic view of the child’s academic performance, since children with RD are known to face academic challenges in many domains and may face a decline in overall school performance   for each measure , including only those who had completed the relevant questionnaires. Then, for each datapoint for each measure, we calculated the z score by subtracting the mean from the raw score and dividing it by the standard deviation. As such, for each observation per participant, a normalized score for every measure was obtained at every timepoint. These z scores were thereafter used in all subsequent analyses.Since anxiety and academic performance were assessed using multiple scales at different time points and between the different schools over the course of the study, in order to combine the different measures and better interpret the results, we standardized all the survey total scores to obtain their Baseline characteristics were summarized using descriptive statistics. Pearson correlations were used to assess correlations among predictor and outcome variables at baseline. Prior to conducting the formal analysis for hypothesis testing, we first did an exploratory analysis to look at the change in the mean grit and resilience scores over time among all participants in order to determine whether these specialized schools were having an impact on their overall grit and resilience. Repeated measures analysis using mixed-effects models was used to determine whether there were significant changes in the mean grit and resilience across the timepoints, with “subject ID” and “school” being defined as random effects. In order to determine whether the number of available timepoints played a role in this trend, sensitivity analyses were done to look at the change in the mean grit and resilience scores over time in the following subgroups: (I) those with at least 4 timepoints of measurements, and (II) those with measurements at 3 timepoints or less.We tested two key questions in this study. First, we investigated the association between grit and resilience (predictor variable) and all the outcomes  cross-sectionally at baseline, with parent-reported and teacher-reported grit and resilience being analyzed separately. This was done using linear regression models, with each model being subsequently adjusted for the age and sex of the child. Therefore, a total of 8 univariate (unadjusted) regression models and 8 multivariate (adjusted) regression models were run. In order to determine if the nesting of students within the different school sites contributed to significant variability at baseline, we tested for its random effects by conducting the Bruesch-Pagan Lagrange multiplier test for all our models, which showed evidence for no significant difference across schools. As such, simple linear regression models were used for the cross-sectional analyses.Second, we examined the association between the change in grit and resilience and the change in outcomes  within an individual over time. Repeated measures analysis using linear mixed-effects models were used to assess this relationship. We used mixed-effects models to study longitudinal associations, instead of predicting change in outcomes with baseline grit and resilience, to use the full power of the dataset and take all available observations into account. Generating change scores for the alternate analysis  involved losing a large number of observations (70% loss), which markedly decreased the power of the analysis. As such, we felt that this was not the most rigorous way to examine the true associations in the dataset.We defined “subject ID” as the major source of random effects, while time was coded as an ordinal variable . We accounted for the nesting of students within the school sites by entering “school” as a random effect in the mixed-effects model. We subsequently controlled for the age and sex of the child in all models. Parent-reported and teacher-reported grit and resilience were analyzed separately. While the parent-rater for a given participant was constant throughout the study, participants who were enrolled in the study for longer periods of time had more than one teacher-rater, as they had a new teacher for each academic year. The number of teacher-raters ranged between one and four, depending on when the participant enrolled. In order to account for this change, we adjusted for the number of teacher-raters that a child had over the course of the study. A total of 8 unadjusted linear mixed-effects models and 8 adjusted linear mixed-effects models were run. We focused specifically on the within-subject association; to make sure that the measured change in variables was due to within-individual change rather than between-individual change, we decomposed the predictor variable (grit and resilience) to two components: the mean and deviation. We then entered both pieces into the model as predictors, where the mean form represented between-cluster association between grit and resilience and the outcome of interest and the deviation form represented the within-cluster association. All results of the mixed-effects models report the deviation form of grit and resilience to reflect the within-subject change. Mixed-effects models also have the advantage of controlling for differences in the number of timepoints of data available between the participants (due to staggered entry into the study). Since the predictor in all models was time-varying, we did not include any time variable into the models as the coefficients for the models can directly be interpreted as the change in outcome associated with the change in the predictor , we used the nonparametric bootstrapping method of bias-corrected percentile confidence intervals (with 1000 bootstrap samples) to calculate the regression coefficients and confidence intervals. Sensitivity analysis was conducted on models that indicated possible influential points by removing these data points. In all cases, there were no qualitative differences after excluding them. Therefore, the original data was kept. P-values of less than 0.04 were considered statistically significant, after correcting for multiple comparisons using the Benjamini–Hochberg procedure, with a false discovery rate of 0.1  or by teachers (p < 0.001).The average normalized grit and resilience scores among all participants steadily increased over time, regardless of whether it was evaluated by parents or by teachers Fig. . The resp < 0.001 for both parent- and teacher-reported), the subgroup of participants who had measurements at three points or less  did not show any such change (p = 0.5 for parent-reported and p = 0.2 for teacher-reported). These results indicate that the general increase in grit and resilience depends on how long one has been in the study, and that there is a certain time threshold to cross (approximately 1 year) before we see any significant increases in grit and resilience. Nevertheless, in general, there were statistically significant improvements in mean grit and resilience (as rated by both parents and teachers) over time.In our sensitivity analysis, we found that while the subgroup of participants who had at least four timepoints of data available  showed an increase in the mean grit and resilience over time  or by teachers (p < 0.001). These associations remained statistically significant even after controlling for age and sex . Similarly, grit and resilience was significantly associated with depression in unadjusted analyses . After adjusting for age and sex, these associations remained statistically significant .In unadjusted analyses, grit and resilience was significantly associated with anxiety, regardless of whether grit and resilience was measured by parents (p < 0.001), but parent-reported grit and resilience was not (p = 0.04). After adjusting for age and sex, teacher-reported grit and resilience remained significantly associated with academic performance (p < 0.001). Similarly, grit and resilience was significantly associated with quality of life in unadjusted analyses . These associations remained statistically significant even after controlling for age and sex, .In unadjusted analyses, teacher-reported grit and resilience was significantly associated with academic performance  for each outcome Table . Neverthp < 0.001), and after adjusting for age, sex, and number of teacher-raters . This means that within a subject, every SD increase in their grit and resilience was associated with a 0.4 SD decrease in their anxiety score over time. However, this association was not seen for parent-reported grit and resilience. Similarly, change in parent-reported grit and resilience was significantly associated with change in depression over time within an individual in both unadjusted analyses , and after adjusting for age and sex . However, this association was not seen for teacher-reported grit and resilience.Change in teacher-reported grit and resilience was significantly associated with change in anxiety over time within an individual in both unadjusted analyses , and after adjusting for age, sex, and number of teacher-raters . However, this association was not seen for parent-reported grit and resilience. Similarly, parent-reported change in grit and resilience was significantly associated with change in quality of life over time within an individual, in both unadjusted analyses , and after adjusting for age and sex . However, this association was not seen for teacher-reported grit and resilience.Change in teacher-reported grit and resilience was significantly associated with change in academic performance over time within an individual in both unadjusted analyses . In this 3-year longitudinal cohort study, we used a combined measure of grit and resilience and assessed its relationship with anxiety, depression, academic performance, and quality of life in children with RD, with the primary goal of determining if grit and resilience was associated with these other outcomes. In particular, we examined whether baseline grit and resilience could predict baseline outcomes and whether change in grit and resilience could predict change in outcomes over time.Our primary results showed grit and resilience to be significantly associated with anxiety, depression, academic performance, and quality of life in children with RD, both cross-sectionally and longitudinally, even after adjusting for age and sex. If the direction of this association is accurate , then these findings may suggest that interventions to improve grit and resilience are likely to lead to many positive benefits. Notably, we were able to demonstrate that on average grit and resilience improved over time, suggesting that the specialized education environment in these dyslexia schools is fostering a positive change. This finding is of particular interest because grit and resilience have been argued to have trait-like characteristics , which indicates a moderate effect of grit and resilience on all the outcomes.While longitudinal analysis showed improvements in grit and resilience to be associated with improvements in outcomes within an individual, it should be noted that the observed associations depended on the evaluator of grit and resilience, that is whether it was measured by parents or by teachers. Notably, increased grit and resilience was significantly associated with decreased depression and increased quality of life when grit and resilience was measured by parents (but not by teachers). Conversely, increased grit and resilience was significantly associated with decreased anxiety and increased academic performance when grit and resilience was measured by teachers (but not by parents). Interestingly enough, depression and quality of life were evaluated by parents, whereas anxiety and academic performance were evaluated by teachers, respectively. This indicates that these significant associations only appeared when both the predictor and outcome were being measured by the same evaluator. While the issue of measurement bias may come to mind, there is no reason to believe that either the parents or the teachers would have systematic bias .Rather, these results suggest the possibility that grit and resilience may have different qualities depending on the context and environment, i.e., grit and resilience in the home environment (which is measured by parents) may be inherently different from grit and resilience in the classroom environment (which is measured by the teachers). This could explain why grit and resilience in the home environment was only associated with other outcomes observed and evaluated in the same environment by the same evaluators  but was not associated with outcomes seen in the classroom environment (anxiety and academic performance). Similarly, this may explain why grit and resilience in the classroom environment was only associated with other outcomes measured in the classroom environment (anxiety and academic performance) but was not associated with outcomes seen in the classroom environment . Further research is required to delineate how grit and resilience may be manifested in different environments and contexts and whether those variances are significant enough to classify them as different constructs.There has been much research on how grit and/or resilience is related to mental health, academic achievement, and quality of life in other populations that do not have RD, which indicate the positive impact of both grit and resilience on all these outcomes in the general population. However, to our knowledge, grit and resilience had not previously been examined in the RD population, especially in the context of these outcomes. Our findings are consistent with previous studies by showing higher levels of grit and resilience to be associated with reductions in anxiety and depression and improvements in quality of life. In the case of academic performance, our results are consistent with studies that show a moderate positive association between grit and academic performance. One reason why we may have seen a stronger relationship, in contrast to studies that showed weak associations or indeed did not find any such associations as all, may be because of the nature of the performance domain, which has been proposed to play a moderating role in the relationship. In essence, high levels of grit may have the most impact on academic performance, if the task is difficult and well-defined, whereas grit may not be as useful for easy or novel and ill-defined tasks  and depression (SMFQ) measures at both baseline and final timepoints in the current sample found them to be very similar to a normative typically developing population. In the case of SAS-TR, the baseline and final timepoint mean ± SD were 10.2 ± 8 and 10.5 ± 7, respectively, which is comparable to that in the typically developing population, 10.8 ± 8.4 , or that it goes in both directions. Finally, because this is an observational study, the associations observed between grit and resilience and all outcomes of interest may be susceptible to unmeasured confounding, thus limiting our ability to assess causality. Variables, such as classroom environment, self-esteem, interpersonal relationships, and severity of RD, may be linked to grit and resilience and all outcomes. However, considering that there is no consensus on whether these are confounders to begin with, or whether they could be mediators instead, we thought it prudent to not control for them. Nonetheless, we adjusted for age and sex using multivariate models.This study has several limitations that should be noted. Firstly, although grit and resilience are strongly related constructs, so far, they have been studied as individual and separate concepts. As such, the combination of the two constructs together and its subsequent measurement by the Grit and Resilience Scale makes our variable unique and may hinder comparisons with other studies, especially considering that it did not factor as one construct. Nevertheless, grit and resilience are highly similar constructs and many items in the questionnaire were adapted from validated scales for the two separate measures  and in longitudinal analyses further strengthens this evidence. In addition, the increase in grit and resilience over time in all three schools demonstrates that a specialized school setting may be effective for improving grit and resilience, which may have set the stage for further improvements in other outcomes, such as mental health, academic performance, and quality of life. In future studies, intervention programs specifically targeted to increase grit and resilience may prove to be beneficial to the RD population. In order to do so, we could investigate the specific interventions used in these specialized schools and identify which ones were most predictive of changes in grit and resilience over time. This knowledge would then allow for an evidence-based program designed to specifically enhance grit and resilience. This program could then be further examined to see if implementation in a new school environment would lead to improvements in the secondary outcomes of mental health, academic performance, and quality of life.Supplementary file1 (DOCX 35 KB)Below is the link to the electronic supplementary material.


A new software package provides more accurate cancer risk prediction profiles and has the ability to integrate more genes and cancer types in the future. Related research article Lee G, Liang JW, Zhang Q, Huang T, Choirat C, Parmigani G, Braun D. 2021. Multi-syndrome, multi-gene risk modeling for individuals with a family history of cancer with the novel R package PanelPRO. eLife10:e68699. doi: 10.7554/eLife.68699Countless hours have been dedicated to researching cancer – how to prevent it, how to diagnose it early, and how to treat it. Yet, cancer remains a leading cause of death worldwide, accounting for almost 10 million fatalities in 2020.Most cancers are caused by changes to genes that happen over a person’s lifetime. In rarer cases (about 5–10%), they start due to inherited genetic mutations that produce a predisposition to cancer. In these instances, also known as familial or hereditary cancer syndromes, the mutation is passed down from generation to generation. In these families, more members tend to develop cancers than expected – often of the same or related type – which can also start at a particularly early age.It is important to identify people with such genetic mutations so that they – and any family members at higher risk – can undergo enhanced cancer screening. Family history can be a useful predictor of hereditary cancer risk . As suchHistorically, such models have been particularly valuable for deciding who to offer genetic testing to when only few and often costly genetic tests were available . In someThe researchers, who are based at ETH Zürich, EPFL, Harvard, the Dana-Farber Cancer Institute, and the Broad Institute, developed PanelPRO, a tool that uses evidence gathered from extensive literature reviews to model the complex interplay between genes and cancer risk. PanelPRO’s workflow consists of four main parts: input, preprocessing, algorithm, and output .The user first adds information about a history of cancers in a family – such as ages and cancer diagnoses – and other factors that might affect cancer risk. These include any risk-reducing surgeries in relatives, or tumors with biomarkers that might indicate a potential hereditary cause of their cancer. The software then adds information on the frequency of different hereditary cancer syndromes and assesses their associated cancer risks. PanelPRO can currently accommodate 18 types of cancer and generate predictions of probable mutations for 24 genes, but its code allows for the addition of new cancers or cancer-related genes that may be identified in the future.During the preprocessing stage, the software verifies the input for any missing information and data, and also for any family relationships not supported by the software, such as ‘double cousins’, which occur when two siblings have children with two siblings from another family. Messages, warnings, or errors may be given to the user if any issues are detected.After the information has been checked and modified as needed, the model proceeds to the algorithm stage. To calculate the output, the algorithm uses probabilities based on the family history, the frequency of hereditary cancer syndromes in the population, and the cancer history that would be expected if a cancer syndrome were present. The program then estimates the likelihood of a person in a family to have a mutation in a gene linked to an increased risk of cancer. These calculations can also be easily run for other family members using the existing information. It also shows a personalized estimate of future cancer risks. Users can choose which cancer types and genes to display.However, some outstanding issues remain. Misreported family history information, such as an inaccurate cancer diagnosis or unknown age of diagnosis, can significantly affect estimates, highlighting that accuracy of patient-reported information is key to producing correct estimates . While pMoreover, analyses with a similar risk modeling software have revealed that a strict adherence to a 10% risk threshold to qualify for a test for a probable mutation in the BRCA gene  would miss around 25% of individuals carrying a mutation when compared to genetic testing outcomes . This isNevertheless, the higher number of genes and cancer types supported by PanelPRO compared to other risk models are impressive and its ability to incorporate new genes and cancer types as testing advances are key in this fast-paced, constantly advancing field.


N = 417) to analyse the effect of such a training protocol, while considering the role of scepticism, age, and level of education. Our findings show a significant relationship between the training protocol and the ability of social media users to detect fake news, suggesting that the protocol can play a positive role in training social media users to recognize fake news. Moreover, we find a direct positive relationship between age and level of education on the one hand and ability to detect fake news on the other, which has implications for future research. We demonstrate the potential of training protocols in countering the effects of fake news, as a scalable solution that empowers users and addresses concerns about the time-consuming nature of fact-checking.We explore whether training protocols can enhance the ability of social media users to detect fake news, by conducting an online experiment ( The problem of fake news and misinformation is currently often discussed, specifically in the context of social media. Whilst the concepts are not new  explained by other variables. A closer look at the literature on fake news reveals that the presentation of news in certain ways leads to increase scepticism in evaluation of all news articles, including the ones for which the way of presentation had not been not changed . If assigned to the experimental condition, the participant receives the same instructions for the task, but also sees the training protocol. This training protocol is developed based on prior research and known fact-checking efforts (see Appendix I). This protocol serves as a simple training mechanism that allows the general public to improve their abilities to assess the accurateness and credibility of news messages.After reading the instructions, all participants regardless of their group, were asked to complete the same task. News stories from different news outlets were selected. These were categorised as ‘real’ or ‘fake’ through the use of expert fact checkers. In total, 16 published news stories were selected to ensure individual characteristics are controlled for as much as possible. However, to reduce the length of the experiment, the participants were randomly presented with eight of these articles, four of which were real and four of which were fake. After completing the task, the respondents were asked to fill out the questions regarding scepticism and demographics. The titles of the 16 published news stories that were used during the study are presented in Appendix II Table . Whilst In total, 636 social media users participated in our experiment. Out of these, 219 did not complete the experimental tasks and, thus, were removed from the dataset. Out of the remaining responses, 16 did not fill out all questions regarding demographics and scepticism. However, as they did complete the experimental task and their data is sufficient to test H1, their data is retained for this analysis. However, these participants were excluded from the analyses regarding hypotheses set 2 and 3. Out of the remaining 417 respondents, 211 (50.6%) are male, 160 are female (38.4%), and 23 (5.5%) selected the option ‘other.’ Furthermore, the large majority of respondents is between 18 and 34 years old (69.6%). One out of five respondents is older than 34, and 10.5% is younger than 18. Furthermore, a large group of respondents has obtained or is currently obtaining a BSc or MSc degree (57.6%). Finally, the majority of respondents is either working full-time (41.6%) or studying full-time (33.2%).The data was screened for outliers and other assumptions. To detect outliers, Mahalanobis Distance and Cook’s Distance are used. If a data point exceeds the critical value for both measures, the data is excluded from further analysis. For Mahalanobis Distance, the critical value is set at 18.467, based on Tabachnick and Fidell . The resOur independent variable (IV) is the training protocol, aiming to find whether it can improve how people score on the dependent variable (DV), which is ‘Ability to detect fake news.’ The variable ‘Training protocol’ is a categorical variable and tells us what condition the participant is assigned to. The variable ‘Ability to detect fake news’ is calculated by assessing how well a participant scored on assessing the news articles. A correct assessment is scored ‘1’ and an incorrect assessment ‘0.’ An overall score was calculated by dividing the total score by eight, which means all scores are between 0 and 1. This variable thus is a ratio variable.The variable ‘Scepticism’ is added to the conceptual framework as potential mediator. This variable is an ordinal variable and is measured using a scale developed by Obermiller and Spangenberg . The oriFor the analysis, first the direct relationship between training protocols and one’s ability to assess misinformation is explored. This allows us to see whether protocols have the potential to train users on recognizing fake news and allows us to explore which protocol works best. For this, an independent samples t-test is used as this test allows for comparison of the scores of multiple groups on some variable, in this case ‘Ability to detect fake news’. Moreover, the direct relationship between ‘Scepticism’ and ‘Ability to detect fake news’ is explored using a correlation analysis. Furthermore, the mediating effect is analysed to see whether ‘Scepticism’ plays a role in explaining the direct relationship between the training protocol and one’s ability to detect fake news.α. As discussed above, the value for the variable ‘Scepticism’ is calculated using a scale consisting of nine questions. For ‘Scepticism’ Cronbach’s α is 0.906 . This is above the recommended value, and we can thus assume the internal consistency is satisfactory for further analysis. Furthermore, skewness and kurtosis are considered to ensure normality before moving on to the analysis. For skewness, the only variable exceeding 1.000 is gender, implying the distribution of this variable is positively skewed. This can be explained via the descriptive statistics, showing there are more male than female participants. Further tests will show whether the participants have been distributed evenly in terms of gender or whether this skewed distribution has implications. Apart from these tests prior to the analysis, the variable ‘Gender’ will not be used to accept or reject hypotheses. We thus expect no major problems following this skewed distribution. The distribution of age is moderately skewed. In this case, we see a positively skewed distribution, indicating that the distribution leans towards the younger age groups. Looking at the descriptive statistics this makes sense, as the majority of respondents is below 35 years old. Similar to gender, further tests will show whether the age groups were distributed evenly across the conditions and no further action is required at this point. In terms of kurtosis, the variable for most variables falls within the accepted range. For ‘Occupation’ and ‘Gender’, however, the reported values fall outside the range of -1 to 1, indicating that these values are not normally distributed and have a peaked distribution. As these variables are not used for testing hypotheses, no further action is needed. Further tests will show whether the distribution across groups is sufficient. Next, the correlations between the IV are examined to check for multicollinearity  values are between 1.000 and 1.300, and do not exceed critical levels. Finally, we test for the normality, linearity, and homoscedasticity of residuals. No major deviations were seen in the Normal P-P plot, suggestion normality. Moreover, the scatterplot has a rectangular shape with no clear pattern, which suggests no violation of the assumptions either. Lastly, no data points fall above or below the 3.3 or -3.3 border, which indicates that there are no outliers that need further consideration  = 10.113, p = 0.120, phi = 0.159). This indicates random distribution in terms of age groups across the conditions. Pearson’s Chi-square value for gender is not significant either  = 5.046, p = 0.168, phi = 0.112), suggesting sufficient random distribution in terms of gender. For level of education, Pearson’s Chi-square value is not significant  = 3.877, p = 0.693, phi = 0.098), and for occupation Pearson’s Chi-square value is not significant as well  = 8.506, p = 0.203, phi = 0.146). Thus, we can assume that the participants are distributed evenly across the groups and no problems are expected in further steps of the analysis. In addition, a One-Way ANOVA is executed to test the effectiveness of the manipulation. The output shows significant differences in the score on fake news detection between the control group and the experimental group  = 12.647, p < 0.005). Therefore, we can assume the manipulation is sufficient and can continue with further data analysis.To ensure that the distribution of participants into groups meets all requirement and all participants are distributed evenly in terms of personal characteristics, such as age and gender, several tests are carried out. First, a Chi-Square Test of Independence is conducted to check the distribution in terms of age, gender, level of education, and occupation. For age, Pearson’s Chi-square value is not significant  and experimental group  differs significantly (t (415) = -3.556, p < 0.005), which suggest that the training protocol affects users’ ability to distinguish fake and real news messages.To compare the scores on ‘Ability to detect fake news’ between the control and experimental group, an independent samples t-test was conducted. The output shows that the fake news detection score of the control . Similarly, a correlation analysis is executed to find whether there is a relationship between age and one’s fake news detection score, with a positive relationship weakly significant at the 90% interval level . We also find a significant positive relationship between level of education and one’s ability to detect fake news .As the literature gives indications for scepticism, level of education, and age may be related to one’s ability to detect fake news, these are considered as well. Using the correlations from Table b = 0.058, SE = 0.016, 95% CI ). However, looking at the direct relationship between the training protocol and ‘Scepticism,’ no statistically significant effect is found . This indicates that the training protocol does not significantly affect one’s level of scepticism directly. The direct relationship between scepticism and one’s ability to detect fake news was not statistically significant either . This indicates that the respondents’ level of scepticism did not significantly affect their score on fake news detection. The mediation effect is tested using non-parametric bootstrapping. This indirect effect  is not significant, and in the current model, no evidence is found for mediation.After establishing the main effects, the expected mediating effect of ‘Scepticism’ is analysed to find out whether the direct relationship between the training protocol and the public’s ability to detect fake news can be (in part) explained by one’s level of scepticism. For this purpose, the PROCESS macro Hayes,  is used F = 5.686, p < 0.001, R2 = 0.041). The R-squared value suggests that the model can explain 4.1% of the variance in ‘Ability to detect fake news’. While the training protocol  and age  individually weakly predict the participants’ ability to detect fake news, the interaction between these does not significantly predict their ability to detect fake news. Therefore, H3a, in which age was predicted to play a moderating role, is rejected.To measure the moderation effects, the SPSS PROCESS macro Hayes,  was usedF = 2.761, p = 0.004, R2 = 0.066). The R-squared value suggests that the model can explain 6.6% of the variance in ‘Ability to detect fake news’. Moreover, the output shows that the training protocol significantly predicts ability to detect fake news . However, none of the other variables or interactions significantly predict the participants’ ability to detect fake news , the moderator variable is ‘Level of education’ , and the DV is ‘Ability to detect fake news’. Similar to the previous analysis, model 1 with 5000 bootstrap samples is selected and no variables are included as covariates. Furthermore, effects are interpreted as statistically significant in case the CI does not include 0. The output shows that the model as a whole, including all variables, is significant (We find no evidence for a strengthening or weakening effect of these variables on the link between the training protocol and users’ ability to detect fake news. In addition to clarifying our hypotheses, the results point to two more findings. Although not included in our hypotheses, the results show a weakly significant relationship between age and one’s ability to detect fake news. Conclusions need to be drawn with caution, as the effect is only significant at the 90% interval level, but this finding fits prior research and is considered below. Moreover, the results show a significant relationship between level of education and one’s ability to detect fake news.Our aim was to explore the role of training protocols in enabling social media users to detect fake news. Prior research suggests using tools on social media and employing fact-checkers, but this direct relationship has not been considered before. Our findings show that those exposed to the training protocol including information on how to recognize fake news score better on fake news detection. Applying this more broadly, this implies that complex education or training tools that require large investments may not be necessary, as relatively simple training protocols consisting of tips and information can lead to favourable results. Scepticism is also considered here, as prior studies suggest that higher levels of scepticism might lead to higher levels of critical analysis of all news stories one encounters. However, we do not find that this enhanced level of critical analysis leads to better performance in detecting fake news. Moreover, scepticism does not act as a mediator and cannot explain the relationship between the training protocol and one’s ability to detect fake news. In addition, demographic variables were also considered. Age seems positively related to one’s ability to detect fake news, implying that the older one gets, the better they are at detecting fake news. While this result needs to be drawn with caution as it is only weakly significant, it confirms findings from prior research stating older generations are better at distinguishing fake news from real ones. Moreover, our findings show a relationship between level of education and ability to detect fake news, suggesting that those that have completed higher levels of education are better at detecting fake news. While a general protocol already reaps positive results, it could be beneficial to tune it to individual needs considering age groups and level of education. The findings regarding age and level of education confirm previous work considering the effect of demographic factors on fake news detection. We expected these variables to play a moderating role—that is, the training protocol would have a stronger positive effect on younger people and on people with lower levels of education. However, the results of the experiment do not provide evidence for this.Although the literature discusses many ways to counter fake news and deal with its consequences, for instance using algorithms and fact-checking by experts, there are a lot of limitations to these methods. First, AI is an often-mentioned solution to detecting fake news on social media. However, the development of such AI-based solutions is time-consuming and due to the fast rate at which misinformation technology is developing this is not a comprehensive solution. A second proposed solution is the employment of fact-checkers. However, manual fact-checking is time-consuming and while experts’ knowledge is valuable in this regard, it cannot be a long-term solution. Prior studies, thus, call for educating users and providing them with the tools to individually deal with fake news. We extend this body of literature by developing and studying such a tool aimed at equipping users with the right skills. We address the concerns with existing methods and shows that the protocol can help in countering the effects of fake news and can become a first step in the development of effective training protocols.Our work has a clear focus on the extant Information Systems research agenda (Struijk et al., The consequences of fake news are increasingly harmful in a time when we rely on social media. Filter bubbles and echo chambers lead to users being exposed to information that fits their existing beliefs. This has negative consequences, regardless of whether the stories are real or fake. The effect of fake news combined with effects of filter bubbles and echo chambers may increase polarization through a lack of exposure to balanced news. We answer calls in the literature on empowering and educating users about fake news and their consequences and propose a new solution that makes use of fact-checkers’ knowledge and simultaneously is easily scalable without requiring large investments. Our solution is not proposed as a substitute for the above-mentioned solutions, but rather as a complementary tool, which is suitable for use on social media platforms, such as Facebook, and on news outlets’ websites. These organisations can use such a tool to ensure higher quality content, raise awareness among users, and educate them about how to evaluate news. This can help the public increase their skills to critically analyse news and may in turn help in addressing more recent concerns about the declining trust in traditional news outlets. In this way, experts’ knowledge can be shared with the public to help them improve their skills and become better at detecting fake news. Although most suited to social media platforms and news outlets, the protocol is potentially suited for broader use as well, for instance on websites and platforms owned by the government. This allows for broader spread of and attention to information regarding fake news. Moreover, widespread use of this tool can encourage awareness and lead to more critical analysis of all information presented. Furthermore, as education seems to play a significant role, we suggest more education on fake news and its negative consequences, especially during earlier stages of education is worth looking into, as this likely helps in reducing these differences later in life. We therefore suggest the use of these training protocols in schools.Although we followed a structured design, our work has limitations that need to be acknowledged. First, the experiment is carried out online, which although does not have direct implications for the results, it implies a lack of control. Moreover, the participants are from around the world, while the news articles presented during the data collection are in English. Differences in culture and native language may affect the way in which participants assess the news articles and answer the questions, as knowledge about local politics and other developments might play a role. Prior research suggests the potential effect of culture (Rampersad & Althiyabi, We explore the effect that training protocols can have on social media users’ ability to detect fake news. Such training protocols can assist in countering the negative effects of fake news and misinformation and our findings can be seen as a bedrock for further research into how these protocols should be shaped and how they can be tuned to the needs of different groups. Our study is the first to report the potential effect of training protocols on the ability to detect fake news. Our conclusions were drawn based on data collected using an online experiment in which more than 400 participants were asked to complete a fake news detection task. Additional variables were taken into consideration to see whether other factors might play a role. The role of age and level of education indicate that these demographic factors should be considered in the battle against fake news and misinformation. We established the positive effect training protocols have and give way to further research into the development and employment of these protocols. Moreover, we show that employment of such protocols by social media and news organizations might help in educating users and encouraging them to seek a more balanced set of news.