Although tuberculosis (TB) is a curable disease, treatment is complex and prolonged, requiring considerable commitment from patients. This study aimed to understand the common perspectives of TB patients across Brazil, Russia, India, China, and South Africa throughout their disease journey, including the emotional, psychological, and practical challenges that patients and their families face.n = 40) completed health questionnaires, video/telephone interviews, and diaries regarding their experiences of TB. Additionally, 52 household members were interviewed. Patients at different stages of their TB treatment journey, from a range of socioeconomic groups, with or without TB risk factors were sought. Anonymized data underwent triangulation and thematic analysis by iterative coding of statements.This qualitative market research study was conducted between July 2020 and February 2021. Eight TB patients from each country  Economic hardship from loss of income and medical/travel expenses. 2) Widespread stigma, delaying presentation and deeply affecting patients’ emotional wellbeing. 3) TB and HIV co-infection was particularly challenging, but increased TB awareness and accelerated diagnosis. 4) Disruption to family life strained relationships and increased patients’ feelings of isolation and loneliness. 5) The COVID-19 pandemic made it easier for TB patients to keep their condition private, but disrupted access to services.Despite disparate cultural, socio-economic, and systemic contexts across countries, TB patients experience common challenges. A robust examination of the needs of individual patients and their families is required to improve the patient experience, encourage adherence, and promote cure, given the limitations of current treatment.The online version contains supplementary material available at 10.1186/s12889-022-14115-7. Tuberculosis (TB) is a communicable infectious disease affecting around one quarter of the world’s population . The ‘BRMycobacterium tuberculosis, around 5–10% of those infected will develop active disease. In 2019, 10 million new active cases and 1.4 million deaths were reported ) reported a physical impact of TB compared with those that had completed treatment (57.1% [8/14]) or who were on a treatment break (33.3% [1/3]). Most patients whose physical activity was impacted by TB reported that this affected them all or most of the time (88.0% [22/25]) , most patients did not consider TB as a potential cause. Notably, patients in South Africa were more likely to suspect TB because of a higher awareness in the community and the link with HIV. In India, recent typhoid infection was suspected as the cause of symptoms in some cases.“The symptoms were there for the last 2 ½ months but I did not know. He was coughing a lot, so I asked him to go to the doctor. He did not listen to me. He feared talking to the doctor.” Relative of TB patient, India (IN19).“One day, I started to have fever in the afternoon. After work, I went to receive infusion in a small local clinic. I remember my body temperature was 39.5 to 39.6 degrees Celsius. The doctor said my condition was very serious, so he prescribed 5 bottles of infusion to me, and I received all of them. But my fever persisted after such a lengthy infusion.” China (CN09).Patients tended to hope that the symptoms would resolve on their own using over-the-counter products and traditional medicine. Patients with addiction to alcohol did not always perceive the severity of their symptoms and were less willing to engage with healthcare providers. However, avoidance of healthcare providers was common across all settings, because of concerns for the associated costs.The pathway for TB cases depended on symptom severity at presentation but navigating the healthcare system was tortuous for some patients. Patients first sought help using a familiar and accessible route Fig. .Fig. 3Th“[I thought] it is some kind of prison disease, which occurs more and more often in people who have served a sentence somewhere. That is, more disadvantaged groups of the population. I always thought about it in this way until I met it myself.” Russia (RU10).Across all countries, the TB diagnosis came as a shock to most patients – their initial thought was ‘Will I die?’. PLWH were less surprised as they were aware of the association with TB. Some patients in South Africa believed they had been vaccinated against TB as children and were therefore protected. Many patients questioned how they had caught TB and worried about the negative misconceptions associated with the disease, particularly in Russia and Brazil. Patients feared that they would be ostracized and shunned by their families and communities. Young people with TB feared for their future, for example their careers, education, and prospects of marriage. Further concerns expressed by patients included the potential disruption to their life, job security and providing for their dependents, especially in India. Overall, there was uncertainty among patients as to whether they could cope; some expressed the fear of unintentional disclosure of their TB diagnosis to others. Notably, across all countries, families were often fearful of the potential costs, with a lack of clarity regarding which elements of treatment would be covered by insurance (where available) or were refundable from the public health system.“[The nurse] said if you don’t take your meds, they send you to [a TB hospital] and then you will receive extreme treatment. They inject you with needles and stuff. That is if you don’t use this meds at home, they will send you there and stay for six months.” South Africa (SA05).Following diagnosis, healthcare providers were quick to reassure patients that TB is treatable but that it will take time and that they must try not to infect others. In South Africa some patients reported being warned of drug resistance. However, beyond this, TB-focused education was limited, and patients often conducted their own research via the Internet and word of mouth, though patient-friendly resources were described as inadequate in some settings.“I take many anti-TB pills every day, covering 4–5 classes, about 20 tablets in total. Sometimes, it’s difficult for me to take medication, as I was quite reluctant to take it initially, but I had no choice, but to take it as a treatment.” China (CN11).Treatment side effects, pill burden, lifestyle restrictions and the long-term commitment required were very challenging for patients Fig. . Patient“Sometimes [redacted] forgets to take the medication, and I argue with him because if one of us forgets the treatment and the other one doesn’t then it won’t work, if we don’t take it together, it won’t work.” Brazil (BR04).Across countries and socioeconomic bands, patients perceived minimal therapy monitoring by healthcare providers, with little evidence of DOT. It is possible that this was because of interruption to normal healthcare services because of the COVID-19 pandemic (see below). Most patients visited healthcare settings frequently to pick up their medications. Less frequently, their weight was measured during clinic visits, sputum tests were conducted, and some patients were informed when they were no longer infectious and could return to work/education. Family played a key role in monitoring during treatment, encouraging patients to continue with their treatment, sharing regular reminders, and helping to pick up medication from health centres. Motivation to comply was prompted by the desire to get back to normal family life and work, the fear of death, potential drug resistance, and hospitalization. Although patients would briefly lapse without serious consequences, they were usually encouraged to continue treatment by family and healthcare providers.“By December I was already feeling like I’m already cured, I nearly decided not to continue with the treatment.” South Africa (SA01).“Actually, they didn’t tell me about the details then. It was very important to emphasize it to me, but the physician didn’t do it. If he did, it would draw my attention and it won’t lead to drug resistance, as I often missed the dose I was supposed to take.” China (CN06).“I live in a little town which is quite far from the city. I can either go by bus which takes at least an hour and a half, or I can get to the nearest bullet train, but there aren’t many trains available and they are expensive.” China (CN08).Once treatment was initiated, health improvements were quickly apparent to most patients, with resolution of fever and abatement in cough. Although this increased patients’ optimism and secured a return to some of their previous activities, it could also lead patients to believe that they had recovered, undermining adherence to therapy. Adherence was also jeopardized where there were high barriers to accessing treatment, a poor understanding of drug resistance, and when patients were alcohol dependent Fig. . Patient"My TB is cured, and I want to start again with my studies. I was preparing for a railway job but I had to give that up because of TB. Now I will start my studies again and apply for a government job." India (IN04)."Thanks to this [TB] I got rid of bad habits, I do not drink alcohol now and smoke less… And I found a job, and I earn some money at the moment, during the first period my brother supported me fully, thanks to him, and my mother helped what she could.” Russia (RU05)."After these three months since I have recovered, this is what it has brought me, the willingness to fight, to battle, also to take even more care of my health, not just mine but also of people around me, and take this story, my testament, my lived experience with TB… So it’s a goal in my life, to spread information among all those who are close to me." Relative of TB patient (BR01).Eleven patients had completed treatment, 4 from South Africa, 4 from India, 2 from Brazil, and 1 from China. All had recovered, 10 following first-line treatment and 1 following second-line treatment (India). Some respondents said that their time in isolation was a time of reflection where their lives had been ‘put on pause’ making them ‘appreciate the little things in life’ they had really missed. A few patients said that their experience with TB has driven them to want to increase awareness, and remove stigma around the disease e.g., patients in Brazil and China set up informal support networks with fellow patients, particularly where patients met during hospital stays. Most patients expressed relief that they were cured, and that treatment was over, and were generally hopeful for their future.“In public [sector healthcare] those nurses don’t care, I remember when I accompanied him, I was told I was not allowed to get inside, so he went in on his own. You go in pick up whatever you need and get out because those people don’t have time for anything.” Relative of TB patient, South Africa (SA01).“In the Government hospital, the doctors do not listen to us. They come when they wish and give medicines. As it is, the doctors do not listen to poor people. I had to buy some medicines from outside.” Relative of TB patient, India (IN17).“Obtaining the medication – because the drugs can only be obtained in the hospital, you can’t buy them in retail pharmacies. If I run out of my medication, I wouldn’t be able to buy it from the retail pharmacy, I would have to go the hospital, which is inconvenient.” China (CN08).Before TB was diagnosed, in some cases patients consulted healthcare providers in the private sector, for example, the local family doctor, traditional medicine providers, or pharmacies. Following diagnosis, more affluent patients claimed on insurance or paid for private sector treatment due to poor perceptions of the public sector, and some sought support in the private sector for a ‘second opinion’ or for problems which they felt were not being addressed in the public sector. However, the majority of patients (36/40) obtained their TB care through the public sector; three patients used the private sector with one accessing both public and private sector healthcare. Treatment was provided for free through the national programs, with relatively good access in most settings, though travel distance and wait times were a barrier to access. There were reports of drug stock outs and out of pocket expenses for additional diagnostic tests or prescriptions, including having to pay for MDR-TB treatment in some settings (China). A minority of patients reported being turned away from the public sector for not having the correct paperwork or not being able to book an appointment. The public sector had a poor reputation for long queues and poor service and most patients aspired to be able to afford private treatment where services were described as being better.“They told me I had a resistant form of TB and that the treatment is very, very long lasting. At first, they said I would have to be hospitalized three to four months and that then I would be able to go home but when I got to the hospital, the ‘girls’ told me that three to four months is optimistic… In short, eight months. Eight in the hospital and a year after the hospital. That was a shock.” Russia (RU12).“In my room there were all young women and all were so great. All of them were socially adapted: an accountant, a paediatrician student. So, let’s say it was good company.” Russia (RU01).The use of sanatoriums in Russia was unique. Following diagnosis, patients were sent to a dedicated facility or a TB unit within a hospital where they remained for at least 3–4 months, though confinement could last for up to a year. They were only allowed to leave with permission, for example, at weekends or holidays. Although patients generally accepted that it was for the ‘greater good’ it was frightening at first because some other patients on the ward had very severe disease. However, some patients expressed surprise that other patients were ‘normal’, because they believed the disease to be often associated with homelessness and prisons.Five major themes were identified as common across all the countries studied Fig. .Fig. 5Th“The main problem is money. There is no problem greater than financial problems.” India (IN01).“I had to keep away from work because there was a lot of dust involved.” Brazil (BR15).“I cannot officially get a job, and I cannot unofficially either. But, what? Am I going to work as a loader? I cannot. This has seriously affected my finances… And who would hire if information comes out that there was TB? You will not get a job. I received a disability [payment].” Russia (RU05).Loss of earnings has the greatest economic impact for TB patients. Most patients stopped work because they felt too unwell to continue or were embarrassed by the symptoms, such as the persistent cough and severe weight loss. Some patients also felt the need to stay away from work to limit transmission to others or were ‘asked to leave’ by their employers as they were not covered by contracts. Many had no entitlement to sick pay. In some cases, patients were concerned that their financial situation could get worse as their diagnosis may mean prospective employers may be reluctant to take them on.“I also buy medications at my own expense [for gastric side effects] i.e. for TB, everything is free of charge due to the medical insurance policy, everything is fine, but if there is something secondary or something else not related to the diagnosis, then that is at your own expense.” Russia (RU07).“We are not educated people. I just wanted my child to recover. We are poor people; we could not work during lockdown. We had to borrow money from many people and requested help from doctors too. I thought my child would recover, but he did not. We were very stressed out.” Relative of TB patient, India (IN21).“To avoid delaying treatment, the doctor told me to take these four drugs upon diagnosis, and urged me to buy them elsewhere, as they were unavailable in the hospital. My wife found they were unavailable in many pharmacies either. Finally, she found them in several pharmacies, from where we bought them in early stage.” China (CN09).Even in regions where TB treatment was publicly funded, associated costs such as tests, hospitalization, prescriptions, travel, special food/supplements to manage weight loss, and medications to manage adverse effects were often borne by patients. The financial impact of TB meant that most patients had to rely on family or sometimes charities for support or take out loans. Time off for appointments still impacted earnings even after patients had returned to work.Across all countries stigma was associated with TB, though it manifested in different ways. In China, TB was often kept a secret, even from family, whereas in South Africa, there was greater openness. In Brazil, though patients were open with family, there was reluctance to acknowledge their diagnosis with their community as TB is associated with wider social issues such as poverty, incarceration and ‘immoral lifestyles’. In India, TB patients felt discriminated against for other reasons, such as poverty, as well as TB. Stigma in Russia was related to the personal circumstances of the patient.“A lot of my friends kept away from me because of this, because that’s what people know, that it’s contagious, but they don’t understand that the person on the other side is suffering as well, and we don’t only suffer a little bit, at least myself, it’s a very painful process, very painful, very complicated.” Relative of TB patient, Brazil (BR01).“The community was no longer as close to us because we are staying with a person that has TB – people at the queue at shops would turn around and come back when we have left.” Relative of TB patient, South Africa (SA14).“When a person has TB he becomes very annoyed as he has to go through a lot of things, plus there also comes a phase were people start avoiding you, they feel that if we come in contact with this person even we might acquire it.” India (IN01).“A person who has TB is not somebody who is well-regarded.” Brazil (BR04).Young patients faced bullying at school/college and being dropped by friendship groups. Adults were ostracized by friends and relatives afraid of contracting TB, and relationships with friends and family suffered, leading to loneliness and depression. Respondents described instances when they were not invited to family events even after they had completed treatment and were cured. In some cases, TB appeared to ‘run in families’ meaning the stigma was intergenerational. Importantly, a family with TB was often considered a ‘low status’ family and this was compounded by the financial difficulties that accompany TB."Now I’m scared I’m HIV positive, I have TB and now there’s Corona [COVID-19], what’s going to happen when I have all three of them?" South Africa (SA18).“So people were really scared, I think they are now more afraid of TB than HIV. I told my neighbour that I was diagnosed with TB and luckily she doesn’t talk much but still I was aware of their behaviour when they came by to do my laundry they would wait outside to hand it over to them and when they are done they would leave it by the door." South Africa (SA10).HIV co-infection played a major role in the TB experience, particularly in South Africa. Awareness of TB was higher among PLWH given their greater risk and regular contact with healthcare services. Also, the path to diagnosis was shorter given their engagement with HIV services with rapid referral reflecting the associated co-infection risks. In many cases, the HIV and TB clinics were co-located improving patient access. However, PLWH were highly aware of the stigma that TB carries with fear around the community reaction during the early stages of their journey.“Life at home isn’t the same because I had to begin separating my cutlery and a glass – my clothes had to be washed separately, we have to clean down the house and open the windows to let the air circulate.” Brazil (BR15).“I’m worried I may infect my parents. So I’ve had to reduce my interactions with them, the time spent with them, the number of occasions I’m with them. And as they get older, they become confused and they don’t understand why I stay away.” China (CN08).“Our house always used to be full at weekends, friends would come around to watch films, sometimes we would make lunch, get pizza and sit and watch films, and then suddenly the house was empty.” Relative of TB patient, Brazil (BR01).A diagnosis of TB affects everyone in the household and the wider family. Cleaning and disinfecting routines have to be established and maintained, and there was a general awareness that separate cutlery must be used, living spaces needed good ventilation, and clothes and bedding should be washed more frequently. Sleeping arrangements to isolate TB patients were particularly problematic in India and South Africa where large families live together, and parental co-sleeping with children was no longer possible where this was practiced. In some cases, children were looked after in the homes of extended family members, away from parents with TB. Married patients feared abandonment or divorce and respondents felt ‘lucky’ that their partners had stayed with them despite their TB status. The reduced family contact, demands of treatment and financial hardship often strained family relationships.“During the pandemic I was unable to go to the hospital for my regular follow-ups and prescription renewal, and so because of that my condition worsened, and I eventually ended up infecting my family.” CN08.Some TB patients observed that the COVID-19 pandemic normalized the idea of infection prevention, with mask wearing becoming common. Also, TB patients were able to hide their diagnosis more easily with social distancing measures. There was also less fear that they could infect the wider community. However, access to healthcare and medication was compromised with restrictions to movement and hospitals not accepting admissions for other conditions. Patients were fearful of ‘catching’ COVID-19 given their impaired respiratory health and existing co-morbidities, such as HIV and diabetes. Some respondents who were coming to the end of their isolation and anticipating greater freedoms and a return to a more normal life then faced COVID-19 restrictions.Assuming that efficacious treatment is provided, TB is curable. However, outcomes are often sub-optimal. This study aimed to explore common themes in the experiences of TB patients and their families in the five BRICS countries from diagnosis to completion of treatment. Using consistent methodology, economic hardship, stigma, TB-HIV co-infection, disruption to family life, and the mixed effects of COVID-19 were identified as themes encompassing the challenges facing TB patients across the five BRICS countries Fig. . These fEconomic hardship was reported across all countries. TB is associated with economic vulnerability but can also drive families into poverty through loss of income, the costs of transportation and food supplements, and associated medical expenses –36. ProgStigma attached to TB is culturally distinct, but stems from a lack of awareness of TB and the persistence of stereotypes , 41. ForThe association between TB and HIV is well documented. However, the impact on patients is less well understood. In this study, PLWH were more aware of TB and were more likely to seek care early and be diagnosed quickly. This is in contrast to a study in Thailand where PLWH had low TB awareness and attributed their early symptoms to AIDS, resulting in delayed TB diagnosis . This emThe respondents in this study described a severely disrupted home life following a TB diagnosis. Patients were isolated and often infirm, and the economic and care responsibilities for family members were considerable. Families also suffered socially, being isolated or shunned by friends and the wider family. In many cases, it was family members who ensured adherence to medication, and social and family support for patients has been previously shown as a key factor in therapy adherence , 53, 54.The COVID-19 epidemic has disrupted healthcare access globally . In our This study has several limitations. Although participants were identified through a variety of channels and a range of socioeconomic groups were sampled, this was not a randomized sample and we acknowledge that both marginalized and privileged groups may not engage in this kind of research. Also, there were no data on whether susceptibility testing was conducted following the TB diagnosis, so the appropriateness of therapy could not be assessed. Neither did we examine the differences between patients’ experiences of drug-susceptible versus MDR-TB; patients were not consistently aware of the difference and most patients were receiving or had recently completed first-line therapy. The patient pathway was not integrated into the thematic analysis but analysed separately in terms of the systemic challenges that patients face. This was because the complexity of the pathway did not map onto the themes in a meaningful way. For example, patients experienced economic hardship, stigma, and disruption to family life at most stages in the patient pathway, whereas TB-HIV co-infection had an important effect on the speed of diagnosis. Thus, patient pathway was examined systematically and separately to the thematic analysis which focused on the emotional, socio-economic and practical impacts of TB on patients’ daily lives. The analysis methods sought to remain impartial with repeated reviews by multiple analysts to reach consensus. However, the analysts were all based in the UK and we recognize that the cultural subtleties of some of the patients’ experiences may not have been fully appreciated.In our study, TB patients’ perceptions and needs were expressed in their own words, from within their home environment, in confidence, to interviewers who were not involved in their healthcare. Most had struggled to adjust to their diagnosis, had poor access to information, lacked support from healthcare workers, were under significant financial pressure, and were highly conscious of stigma and the burden TB placed on their families.Our findings highlight that much work still needs to be done before the goal of ending TB can be achieved. Structural changes require simplification of the TB patient pathway, reliable access to services, and the alleviation of financial pressures. Health education for patients, their families, healthcare providers and the public to increase awareness of TB symptoms and diagnosis, to encourage adherence, and to reduce stigma around the disease is needed. Importantly, TB patients do better with strong family and social networks to sustain them, and a greater understanding of how these can be better supported at the level of the individual patient throughout the TB treatment journey requires further investigation.Despite the different cultural, political, and healthcare settings across the BRICS countries, TB patients faced very similar challenges. This commonality would not necessarily have been expected. It suggests that these factors are not only a product of the healthcare provision in the countries or the social, economic, and cultural pressures that patients face, but reflect an overarching insufficiency in the treatment of TB. The efficient delivery of comprehensive individualized care and support would certainly mitigate the negative impacts of TB on patients. However, these issues will likely not be fully resolved until treatment options are available that rapidly cure TB and prevent onward transmission.Additional file 1. Consent forms.Additional file 2. Screening questions.Additional file 3. Health questionnaire and interview guide.


The authors present the conceptual and system-theoretical model of human motor behaviour. The main assumption is that movement is the only observable manifestation of all psychical processes, thus, it is the only phenomenon enabling the creation of hypotheses concerning the psychological conditioning of human behaviour. They pointed to the fact that in the field of biology, and all the more, in psychology, mathematical descriptions are hardly eligible. In this respect, a system-theoretical approach seems to be appropriate. The authors present two systems: information processing modalities in the human mind, based on Nikolai Bernstein’s theory, and the series of processes from stimuli reception to motor response execution. Both these sub-systems make up a super-system. Its simplified graphical representation may be termed “Column Diagram.” The authors analyse the functioning of this super-system in various intellectual-motor purposeful operations. The system-theoretical perspective enables clear categorisation of various human motor operations, their “driving” mechanisms, internal patterns, and their superficial physical and/or mathematical “appearance.” The stream of consciousness in a human motor operation joins the various psychological constructs, which are reception, perception, attention, motivation, intellect, memory, etc., into one coherent, inseparable system. Philosophiae naturalis principia mathematica” . Nowadays it is clear to us that Laplace was too optimistic, and the “mathematical skeleton” of our world is not as hard as we wish it to be. The “mathematical engine” of science is very powerful, indeed, but it can drive only knowledge of a specific kind. It is highly effective in the non-living world, where the physical subjects passively obey the “stiff” laws external to them, which may be easily described mathematically. The items under investigation do not “actively” influence the relations joining them, and mathematical formalism makes very comfortable “rails for thinking,” which release the scientist from arduous reasoning, while a given problem has been already described mathematically. This is why some of Albert Einstein’s equations turned out to be “wiser than Einstein himself” , who claimed that “s peers” , p. 86. Every kind of science, if it only loses a hard ground of evident understandability and simple explainability under its feet , it automatically reaches for its lifebelt—mathematics.Unfortunately, such a lifebelt merely enables, in certain cases, passively drifting on the surface of knowledge, the understanding of which resides somewhere in the depth. Jack Cohen and Ian Stewart stated:Mathematics wallows in emergent phenomena. It also came to terms, long ago, with something that often puzzles non-mathematicians. By definition, mathematical statements are tautologies. Their conclusions are logical consequences of their hypotheses. The hypotheses already “contain” the information in the conclusions. The conclusions add nothing to what was implicitly known already. Mathematics tells you nothing new  to issues where it is not eligible, may bring about disastrous results . Still emethods” . He remaThere is only one thing that is more unreasonable than the unreasonable effectiveness of mathematics in physics, and this is the unreasonable ineffectiveness of mathematics in biology  means that mathematics is not better than any other branch of science. It is highly, or even extremely efficient in some regions of knowledge, but not equally efficient beyond the kingdom of the Queen of Sciences. To apply it rationally in these “beyond regions,” a scientist must realise, how its limitations are. They may result from the fact that mathematics is too “stiff” for biology.This is no doubt a bon mot, and as such, it cannot be a source of scientific knowledge. However, it may contain a scientific truth. As, Hugo Steinhaus remarked, “ a joke” , p. 47. mathematics is the art of giving the same names to different things.” However, Aristotle had already remarked, “the whole is greater than the sum of its parts.” Unfortunately, in a mathematical equation there is no place for any “greater.” On the contrary, a system is more elastic, and—first of all—it can produce a qualitatively new, unpredictable, emergent system effect , expressed by Henri Poincaré, who stated that “m effect , p. 24. Incidentally, the term “emergent” means that—at least in motor control in humans—a system has a disposable structure. It consists of environment, body, mind, and task. After reaching its aim, it vanishes and leaves only a trace in memory termed “engram” . To solvIn short, the whole of science is being built of interpretations. Mathematics yields some solutions, which in the non-living world may be identified with interpretations. Nevertheless, in a living world, solutions merely make up a basis for systemic interpretations. Mathematics may yield a “bare” solution, which creates only space for reasoning and interpretations. Nothing more. This is why we suggest looking at human behaviour from a systemic perspective, not so user-friendly and unambiguous like mathematics, indeed, yet by far more elastic.Hence, mathematics can be used only for the superficial description of biological or psychological phenomena and processes, but it hardly contributes to their understanding. This may be exemplified with the “evidence-based assessment,” which does not include any understanding; in fact, it vividly resembles the infamous behaviouristic “black box.” It is devoid of understanding, which makes it a vital component of any theory. However, the science is being “woven” just of the theories. Accordingly, mathematics is not a “Queen of Sciences.” To efficiently apply it in non-physical sciences, a scientist has to reject its royal robe, realise, what its limitations are, and not expect from it spectacular results in the fields, where it is able only to sweep given area of knowledge.Probably the most advanced systemic description of human motor capabilities, based on evolutionary and neurophysiological data, has been invented by Nikolai Aleksandrovich Bernstein, who was inspired by earlier works of John Hughlings Jackson .Iosif Moiseevich Feigenberg, Bernstein’s friend and disciple, regarded movements as a key to understanding, how the brain works , p. 44. O postroyenii dvizheniy” (“On the construction of movements”) in 1947 (brain skyscraper.” This term—very accurate in our opinion—appeared only in the book “O lovkosti i yeyo rozvitii” (“On dexterity and its development”), published in Russian in 1991, 25 years after Bernstein’s death  reads: the more complex a motor action is, the higher (and slower) the region of the brain must be engaged. However, the whole system always works like one coherent unit. Accordingly, there is no “one-to-one” assignment of given motor action  to a specific “floor” of the brain skyscraper. In the final motor operation, it is not possible to discern, what results from perception, what from attention, what from intellect, etc.However, in motor control and psychology, just the mind comprises the main point of interest. Accordingly, let us “cleanse” the brain skyscraper from evolutionary and neurophysiological components and “distil” only the information processing ones, while preserving the same (or nearly the same) system of relations. The result may be termed the “modalities’ ladder” ,2019. ToWhile assuming a functional perspective, it becomes necessary to make some small modifications. The A-level of the brain skyscraper must be divided in the modalities’ ladder into two sub-rungs: A1, responsible for maintaining posture (basic muscle tonus), and A2, which controls strength production. Further, in the modalities ladder, there is no need to divide the C-level into C1 (agility) and C2 (dexterity) sub-levels. Accordingly, the ladder contains only one C-rung. A comparison of the brain skyscraper and the modalities ladder is shown in If it had one more column to the left, entitled “Neurophysiological structure of brain skyscraper,” it would include neurophysiological information, which part of the central nervous system is mainly responsible for the content of the line in each of the four columns shown in •of motor operations—reflex, automatism, habit, performance;•of their respective “driving mechanisms”—basic muscle tonus, strength control, technique, tactics , strategy and politics;•of their “mental patterns”—coupling, template, scenario, programme, idea; and•of their physical and mathematical “counterparts”—statics, dynamics, kinetics, kinematics, geometry, topology .good mathematician sees analogies between theories, while the best of them discern analogies between analogies”  and is responsible for what is being performed. The background works in the feedforward mode (it does not engage attention) and is responsible for how a given motor operation is being realised. Such a structure enables the efficient execution of complex operations, while making very frugal use of precious attention.All that we dispose of, all that constitutes the resource of our culture, all the pieces of art, science and technology—all that results from motor activities…”  and the effect of muscle activity , i.e., physical force and/or motion. Both phenomena make up the only “keyhole,” through which we may peep on the action of the mind. Let us quote philosopher Andrzej Wohl: “Let us emphasise that there are no other behaviours than motor ones because movement is the only method of manifestation of what is going on in the mind and the only method of influencing the environment by a human as well. Even if only that of the lips and tongue.We are all agreed that your theory is crazy. The question, which divides us, is whether it is crazy enough to have a chance of being correct. My own feeling is that it is not crazy enough.” It is hard to resist the impression that nowadays, the non-mathematical biology, psychology, and science on motor behaviour need just crazy ideas more than “commonly accepted methodologies” and computers.What goes on between reception of the releaser and production of movement we can only conjecture, for these phenomena and processes cannot be researched directly and experimentally. It seems worth bearing in mind that at the brink of the nineteenth and twentieth century, and in the following decades as well, a very strong impulse for the development of physics was the purely theoretical, “crazy” works of Max Planck, Albert Einstein, Niels Bohr, Peter Higgs, and many others. Respective experiments, in which the phenomena congruent with theoretical anticipation were observed, had been performed much later. For example, the apparent moonshine concepts, like the general theory of relativity, waited for such an experiment 4 years; the Higgs boson in half a century and the gravitational waves in full century. Let us add that the matter of human motor behaviour is, by far, more complex than any problem in physics. Hence, the expectation of immediate experimental verifiability of hypotheses prevents scientists from the free formulation of conjectures, being the most primeval “seeds” of science. In this respect, a highly instructive sound of words of Nobel Prize winner Niels Bohr to another Nobelist, Wolfgang Pauli: “By the way: the theory, being the subject of the comment of Niels Bohr, cannot count among the greatest achievements of Wolfgang Pauli and of the co-author of this concept, another Nobelist, Werner Heisenberg.publish or perish”), it must be built in agreement with the template: material—research—discussion—conclusion. Such a template promotes the “scientists with noses in the ground.” It is enough to adequately collect many results of experiments, to process them with what may be termed “kitchen statistics” (or any other “commonly accepted methodology”), then to name the results with the word “conclusions” —and so, to build one’s position in science. Unfortunately, such works do not contribute to progress in science . Nevertheless, such papers comprise the majority of the content of scientific journals and magazines. Jack Cohen and Ian Stewart wrote:Nevertheless, self-censorship strongly inhibits the development of anthropokinetics. To publish a scientific paper  becomes visible. It is over along with the termination of the movement.In such a model, the RT is the main period, when the abstract pattern of a motor response may be shaped. The conceptual information processing cause-effect chain in a sensorimotor response—the stream of consciousness, cannot be directly observed experimentally.reception. It is not “understandable” to the central nervous system but arouses sense organs. In turn, they produce neural sensory inputs, of electrical nature. They are “understandable” for the neural system and may stimulate it. This link produces awareness.The first link of the chain is stimulus perception, i.e., assigning the information retrieved from memory to the specific sensory input. Thus, it creates chunks of information. This link produces consciousness.The second link is attention, which, based on previous experiences, assigns specific “weight” to each chunk of information and creates their hierarchy. The most important ones make the “fuel” for further information processing. The insufficiently important are rejected and forgotten; they are not transmitted further to motivation and intellect and do not charge them.The third link is motivation, is a “doorkeeper” to the intellect. It transmits (or not) the most important chunks of information and determines the intensity of their further processing.The fourth link, intellect, makes up a specific apex in the whole chain. It is a final link of the “ascending path” , and at the same time, the initial link of the “descending path” . It creates an abstract pattern of the whole possible motor operation. The conceptual structure of the intellect consists of three components: intelligence, intuition, and instinct.The fifth link, Intelligence comprises the “armed forces” of intellect and is responsible for the final assembly of a motor operation pattern. It needs the full information necessary to solve a given task.Intuition is responsible for guessing the lacking information (right or wrong).Usually, an individual does not dispose of full information. Instinct directs the search of information toward those regions of memory, where its discovery is most probable ; so, it is “symmetrical” to motivation.The seventh link, skills, already existing patterns (or component sub-patterns) of the motor operation are being retrieved.In the eight link, efferent copies make up the ninth link of the chain. They are motor operation patterns recorded in memory and enhance the execution of a similar motor operation in the future.The production of strength and movement by the muscles, bringing about desirable effects in an environment , which commences with the reception of a signal, which foreruns the releaser. Only the latter may launch the whole stream of consciousness resulting in a final motor operation. Thus, in the presence of a signal, the RT is reduced to near nil. Moreover, the MT may even start before the reception of the releaser, based only on anticipation.The modalities’ ladder and the motor response chain are simple enough to be joined and create another system, which may be termed “Column Diagram” CD, . Its ideThe CD, just like the stream of consciousness, may be divided into two parts: from reception to intellect , but qualitatively . Also, in by far simpler mathematics, it is not possible to solve a complex differential equation with the plain multiplication table alone.Degrees of Freedom Reduction rule” or Clark’s “007 principles.”The CD –4 show aIncidentally, the D-rung makes a “seat” of common sense. So, while looking at It is worth emphasising that the assumption that information processing works at all five rungs of the modalities’ ladder makes the notion of “subconsciousness” superfluous . For theI should also like to hear you admit that our designations—unconscious, fore-conscious, and conscious are much less likely to arouse prejudice, and are easier to justify than others that have been used or suggested—such as sub-conscious, inter-conscious, between-conscious, etc. . The same equation describes the distribution of tension in a bar in torsion and deformation of an elastic membrane under pressure . On the other hand, an anthropokinetic system is a disposable structure consisting of environment, body, mind, and a task to be solved with the motion. Thus, the pallidum and thalamus play different functions in the “motor creation system” not only in a fish and in a human, but also the same living being in different motor operations.Mathematician René Thom stated that contemporary science became possible only in the 17th century, when the theory got ahead of the experiment , p. 61. there is no certainty in sciences where one of the mathematical sciences cannot be applied, or which are not in relation with these mathematics”  chaotic knowledge, must be properly ordered. The basic instruments for this process may be, roughly, either the “stiff” mathematics or the “elastic” system. Our thesis reads that the latter is at least not less effective than the former. Moreover, we claim that in biology, psychology, and anthropokinetics, it has a clear advantage over the “Queen of Sciences.” Therefore, we strived to present the issues of motor human behaviour from the system-theoretical perspective.The modalities’ ladder and the stream of consciousness in a motor operation are the systems somehow “orthogonal” to each other. However, they may be linked together to form what has been shown in this paper as a column diagram. The more detailed analysis of the structure built of both these systems together, along with a blueprint of a human motor operation, more detailed than a CD, termed “movements’ management matrix” (MMM), can be found in It must be emphasised that both these systems are of non-linear nature. The links between particular elements of the stream of consciousness are non-linear; for example, attention transfers to motivation the information, which is “filtered” and selectively reinforced (or suppressed). The same concerns the rungs of the modalities’ ladder. Here the non-linearity emerges as incomplete “translatability” of information code specific to one rung into the “language”  specific to a neighbouring rung. In this case, we have to do with a specific kind of the “epistemological obstacle,” as by Gaston Bachelard , p. 24. In fact, only this issue has made the main bone of contention between Pavlov and Bernstein. Great Ivan saw the simple reflex as the only mechanism “driving” any motor activity, whereas Great Nikolai discerned various modalities, non-linearly joined with each other, in different motor operations. As a result, he has built a specific “gearbox,” which is the “brain skyscraper,” thus, enabling selection of optimal modality of information processing for a given motor operation.The system-theoretical perspective enables clear arrangement of the sciences’ underlying issues of human motor behaviour: psychology and neurophysiology (anthropokinetics), as well as physiology, anatomy, and physics (biomechanics). Together, they make the components of the more general kinesiology.The concept of modalities’ ladder, firmly rooted in Bernstein’s theory, enables clear categorisation of motor operations, their psychological “driving mechanisms,” their internal mental patterns, as well as their physical and mathematical “counterparts.”The practitioners RS and MS found such categorisations useful in their didactical activity. In a motor performance (D-rung), main load burdens the mental sphere, whereas the C- (habits), B- (automatisms), and A- (reflexes) rungs make merely the “armed forces” of a motor operation. The most advanced of such an operation, where the motor element prevails, is no doubt the habit. It makes a system (not a sheer sum!) of automatisms and reflexes, which in the habit should work in feedforward mode, i.e., without attention engagement. This, alone, makes the whole structure reasonable. Symptomatically, as a system, the habit always works as a coherent and inseparable unit. As such, it should be performed by a learner fluently and efficiently. However, a teacher should discern the “critical points” of the habit, which are automatisms and reflexes, and to correct just those elements, which determine the quality of a whole habit. In this respect, the crucial is identification of particular sub-operations in a habit by a teacher.those phenomena are so elusive and delicate that it is possible to discern them only in the clinical interview, and not in an experimental research, which needs some level of standardization” , which part of the resulting motor operation origins in attention, which in intelligence, and which in foresight. Consequently, purely experimental, yet valuable, research of these issues, e.g., by simple calculation of the value of IQ, seems hardly possible. Moreover, a detailed analysis of these psychological mechanisms makes no sense separately at all! For example, while seen from system-theoretical perspective, memory of such gains will have meaning only when it gets included into a system consisting of environment, task, body, mind, and solution. Such a system is a one-time construct. To perform, once more, a similar or even identical motor operation, one has to build a new system. For example, if a driver has to go with his/her car from point A to point B, the elements of a system are: point A, car, driver and point B. However, when s/he goes back, we have to do with a new system: point B, car, driver, and point A. Therefore, the rule “repetitions without repetitions” makes one of the fundamentals (if not the main one) of Nikolai Bernstein’s theory. Probably, earlier foreknew this Sigmund Freud, who opposed to experimental research in psychology. As Tomasz Witkowski remarked, he thought that “due to dissemination of computer technology, nowadays it became possible to conduct research, publish papers and achieve scientific degrees and titles while still being an illiterate”  Miss Calculations. The instant and zero-one sheer (if not primitive) operations in computers kill the full of fantasy and understanding mathematical analysis. In this respect, highly symptomatic is the “halting problem.” This term, roughly means that after launching a computer procedure, the scientist loses any control over it until the “number cruncher” expels the solution; solution, but not understanding. While paraphrasing mathematician Hugo Steinhaus, “Application of contemporary mathematics and physics to biology is a dead-end… Do not waste time on mathematics—think!”  was not able to create a qualitative image of psychological phenomena and processes. In short, contemporary science cannot create a precise representation, like a technical drawing, of psychological phenomena. Nevertheless, scientists should strive to produce at least an impressionistic (and holistic) image of those issues, describing not their details, but their “soul.” Within this context, the system-theoretical approach seems to be promising.careful inference can be more reliable than “actual observation,” however strongly our intuition protests at admitting it.”  accessible only by speculations. Even Richard Dawkins, known of his repartee, stated, rather timidly: “ing it.” , p. 15. WP, RS, and MS contributed to conception and design of the study. WP organised the database and wrote the first draft of the manuscript. RS and MS completed fragments and wrote corrections of first version. All authors contributed to manuscript revision, read, and approved the submitted version.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


The tremendous physical and mental burden that comes with caregiving puts the intimate partners of patients diagnosed with advanced cancer at risk for mental disorders. However, most partners seem to be protected by resilience. Such a resilience process is promoted by certain individual characteristics  and by the availability of a support network, consisting of family, friends, and healthcare professionals. Such a heterogeneous group striving towards the same goals can be considered a complex adaptive system (CAS), a concept stemming from complexity science.To study the behavior of the support network through the lens of complexity science and to provide insights to the means by which an available network may promote resilience.Nineteen interviews with members from the support networks of eight intimate partners were analyzed deductively using the CAS principles as a coding framework. Subsequently, the quotes under each principle were coded inductively to concretize patterns in the behavior of the support networks. Eventually, the codes were charted into a matrix to identify intra- and inter-CAS similarities, differences, and patterns.The network’s behavior adapts dynamically to the changing circumstances as the patient’s prognosis worsens. Furthermore, the behavior is based on internalized basic rules (such as reassuring availability and maintaining communication without being intrusive), attractors , and the history of the support network. However, the interactions are non-linear and often unpredictable due to the context member’s own concerns, needs, or emotions.Applying the lens of complexity science to the behavior of an intimate partner’s support network gives us insight into the network’s behavioral patterns. Indeed, a support network is a dynamic system that behaves according to the principles of a CAS and adapts resiliently to the changing circumstances as the patient’s prognosis worsens. Moreover, the behavior of the support network appears to promote the intimate partner’s resilience process throughout the patient’s care period.The online version contains supplementary material available at 10.1186/s12904-023-01134-3. The extraordinary mental and physical burdens imposed upon the intimate partner (the person with whom one has an intimate relationship) of a patient diagnosed with advanced cancer places the intimate partner at risk for depression, anxiety, or even post-traumatic stress disorder , 2. Yet A partner being diagnosed with advanced cancer can be considered a potentially traumatic event (PTE), and the diagnosis is often followed by a period of intense emotions . HoweverAnalyzing the behavior of the networks supporting the intimate partner of a person diagnosed with advanced cancer overall and through the lens of complexity science may provide novel insights not yet identified from traditional descriptive studies or other relevant frameworks, such as studies with a socio-psychological approach. Indeed, social psychology has a long history of research in caregiving, focusing on how the behavior, motivation, and thoughts, of the individual caregivers are influenced by their context . HoweverTherefore, this study aims to answer the following research question: How are the principles of a CAS expressed in the behavior of a network supporting an intimate partner of a patient diagnosed with cancer in an advanced stage?The reporting of this study is based upon the Consolidated Criteria for Reporting Qualitative Research (COREQ criteria) . The 32-This interview study was conducted by a multidisciplinary research team consisting of researchers experienced in palliative care, primary care, complexity science, psychology, and qualitative research. The first author, a family physician experienced in palliative care and in qualitative research, initiated the study and conducted the interviews as part of her PhD project. Prior to commencement of the study, no professional nor personal relationship was established between the interviewer and the participants.A thematic framework analysis of the data, stemming from semi-structured interviews, was undertaken , 16. ThrThe target population of this study is the network of family, friends, and professional caregivers supporting the intimate partner of a patient diagnosed with advanced cancer – defined as a patient diagnosed with cancer in stage III or IV or with metastatic cancer. Eight intimate partners – all participants in an ongoing longitudinal qualitative study on resilience in cancer caregiving – were informed verbally about the study objectives and design. An additional file provides more details about the in- and exclusion criteria of the longitudinal study , and occasionally we talk about it. If I tell it to one friend and I say: this is terrible … Of course, it’s terrible. But if it doesn’t happen in your own household, fortunately it doesn’t affect you as much. (SN6 – P1)The more the participant’s and the intimate partner’s lives were intertwined – either through family ties or through shared experiences – the more they shared their emotions with each other. The participants admitted that they could not always cope with their emotions prompted by their commitment on their own. Hence, they shared their stories with other people who were less involved or who did not take part in the intimate partner’s support network.Although each member of a support network acts autonomously, internalized basic rules shape their behavior.But most of all, she felt the need to talk about it [how she experienced her husband’s diagnosis]. And, I thought, let’s get her out of her house. Let’s have a cup of coffee together and talk. Or we could go for a walk so that she feels comfortable to tell her story. I wanted her to be alone with me so that she could talk freely without her husband around. (SN1 – P2)The participants expressed their commitment and willingness to listen to the intimate partner’s stories and they created opportunities to talk. For instance, they invited the intimate partner for a walk, to have tea in the garden, or to sit on the front porch. Here, they respected the intimate partners by leaving the initiative to talk with them without asking questions themselves. Furthermore, they strived toward an open and honest communication by not avoiding difficult topics.Then we told her: “Mom, if you think we could do something to help you, just ask. Don’t feel embarrassed. Yeah, we have our own life but dad and you, you’re so much more important than our job or anything else.” (SN4 – P1)Professional caregivers, family, and friends expressed their unconditional availability for guidance and support of the intimate partner. However, they did not intervene and waited patiently for the intimate partner to take the initiative.If something would go wrong with her [the patient], I’m almost 100% sure he [the intimate partner] will break. I try to avoid this by talking to him regularly. Not to lecture him, but to listen and to say: “Yes, if you did everything in your power…” I’ve certainly made mistakes myself which I’ll regret for the rest of my life. But, I’m just a human being, right? With my gifts and faults. But I try to support him. It won’t be easy for him. It’s already difficult, that’s for sure. (SN6-P1)The participants felt most appreciated by the intimate partner when empathy was expressed. Moreover, acknowledging the intimate partner’s vulnerability could positively influence the relationship between the partners and their support networks.I would say, well, she’s my mom. I love her very much. She was always there for me too. What she’s going through now is probably the most difficult thing she’ll have to endure in her life. So, the least I can do is to be there for her. (SN3-P1)The participants emphasized how they unconditionally supported and assisted the intimate partner, often driven by connectedness, a strong sense of reciprocity, or a genuine affection for their family member or friend.How can I get rid of this blanket of depressive feelings that’s hanging over me? It doesn’t help me and [when I have negative feelings myself] I won’t be able to care for someone else either, right? (SN4-P1)To allow the intimate partner to focus on the care of the patient only, the participants illustrated how they avoided being a burden to the intimate partner themselves by hiding their emotions of grief and sadness and by attending to their own self-care.The behavior of a CAS is characterized by non-linear interactions that can be positive (a modest action causing a disproportionate reaction) or negative (an action eliciting a minor or no reaction).By being attentive and responding to his queries, right? If he needs me, I’m there as quickly as 112 [emergency number in Belgium], that’s for sure. (SN6-P1)When the support network members adhered to the internalized basic rule of reassuring availability with respect for the unconditional autonomy of the intimate partner, they often remained passive, waiting for the intimate partner to take the initiative. However, the same internalized basic rule could elicit positive non-linear behavior such as responding to a request without delay or adjusting travel plans in order to maintain a line of unbroken communication and a quick return home should the situation warrant.When [the patient] was diagnosed, the housemaid said: “Oh, my brother also died because of cancer and I’m afraid to see that phlegm again. I can’t deal with this anymore.” After this she said that she didn’t want to come anymore. Since then, she doesn’t visit my mom any longer either. So, it has become an awkward situation, and it was another hit mentally for my mom. (SN3-P1)Being informed about the patient’s diagnosis of advanced cancer could remind the support context members of former experiences that consequently elicited excessive emotional reactions, expressing themselves in various ways, such as crying or displaying avoidance behavior.I’d bought her [the intimate partner] flowers. “You spent your money on this?” she asked. A small flower when I felt she wasn’t coping well. So, yeah, I brought her flowers, beautiful flowers, the smallest bouquet [laughs]. I know she likes receiving flowers. But at first, she didn’t want to accept the bouquet. However, at night, she started sending messages to say: “I’m sorry for being so brutal. All those people around me seem to be happy, and I must always pretend [to be happy as well].” After messages like these, I knew she was not doing well. (SN2-P2)In addition, intense emotions could be provoked in the intimate partner . Such gestures confronted the partners with their own difficult situation and the contrast to all those not facing a health crisis.At work, she [the intimate partner] pinned a leaflet to the wall stating that her husband was palliative. After, you could see that a lot of customers were suddenly startled and much friendlier towards her. People that are otherwise very strict and rigid now showed empathy and became involved. It all feels strange but I think that’s very comforting to her. (SN3-P1)In certain cases, intimate partners waited to share their stories and explain the circumstances in which they found themselves. After disclosure though, they discovered that people began to offer empathy and expressed a willingness to support.All interviews were conducted during the COVID-19 pandemic. The fear of infecting the patient and the measures in force at that time resulted in extremely careful behavior and avoiding all physical contact.In a CAS, attractors shape the behavior of the system. Accordingly, recurring actions of the studied support networks could be framed as a result of their striving toward the following three attractors:I never feel forced to do anything. I do all this of my own will. I’m the daughter-in-law now [hesitates] and I want to be a good one. I want to be there for those people, even in bad times. They are my family now. And above all, I know that I’m also doing my boyfriend a favor. But a simple thank you is already enough. It feels good when you can do something meaningful for them. (SN5-P1)Family members and friends as well as professional caregivers illustrated how gratefulness and appreciation sharpened their intrinsic motivation to support the intimate partner. For instance, they attended to the others’ needs, shared meaningful experiences, and did their best to create memorable moments.I know that they [the patient and partner] love their granddaughters. That’s their source of joy. The more they see them, the better. That’s what makes a person happy. Just seeing them walk around or being able to talk to them. I know that’s important. And me, well, we are not the kind of people who take a hundred pictures or videos of their children, but we deliberately share these with them more often now. (SN4-P2)The participants were attentive to what events could generate happiness and joy. As such, they intended to spread positivity throughout the intimate partner’s support network as often as possible.We also often said to each other: “Shall we go and see how the grass is growing?” [laughs]. So, we sat down on a bench, drank something and talked about all kinds of things, including the cancer and [the patient] and about him [the intimate partner]. He liked this and it was nice for me too. (SN5-P2)The intimate partner’s friends and family shared how they strived to meet as often as possible , simply because they enjoyed being together or because they felt strongly connected.The history and experiences CAS members share and their mutual relationships can stimulate the dynamic interactions within a CAS as well as paralyze them.I’ve never pushed him to talk because I didn’t know him well enough. But now, I would try to convince him a bit sooner, since now we get along very well. But back then, I was more cautious. In the past, I would have left him alone and if we weren’t going to talk, it was okay. (SN5 – P1)As a result of closer relationships and shared experiences between the intimate partner and support context members, an increase in assistance was offered and accepted. Moreover, the intimate partner, by accepting help, motivated the support context to put forth more suggestions for help, thereby often overriding the internalized basic rule of leaving the initiative to the intimate partner.It was the same with my brother. She [the intimate partner] said: “I haven’t heard from him in a week, that’s not normal.” And yes, that isn’t normal because in that week [the patient’s] health deteriorated dramatically. So, I sent my brother a message that said: “Look, you really should call mom because she needs you, you can’t let her down.” (SN3-P1)When meaningful relationships within the support network threatened to break, the members made efforts to restore them by encouraging contact between each other or by reminding others of the responsibilities assumed in a relationship.When tension arises between the internalized basic rules and one’s own concerns or emotions, the behavior of the CAS becomes increasingly unpredictable, even paradoxical.[Two friends were shopping and having coffee together when the intimate partner called them]. She insisted we both come over [to talk]. We both wondered if we should go see her or not. However, we decided not to go since it was our day off and that we both work full time, and since she [the patient] was in hospital and was being well cared for. (SN2-P2)Although the intimate partner’s family and friends emphasized the importance of being available for guidance and support whenever necessary, they sometimes preferred to take care of their own concerns and needs first.If I can support him [the intimate partner]… Well, I tell you this in confidence that, in fact, no one in the world can help him. There’s only one person who can solve that problem [dealing with the patient’s cancer diagnosis] and it’s the caregiver himself. You can hand him a tool, but if he doesn’t know how to use it, he can’t do anything with it. In the end, everybody should be a bit self-taught. (SN6-P1)Moreover, a participant pointed out that providing guidance and support was actually an internalized basic rule prone to non-linearity since the condition was ultimately relinquished to the intimate partner.I want to be there for her [the intimate partner], but her partner [the patient] is not really my friend. I like her, and she’s always welcome here, that’s not the point. But I decided not to get involved too much. I thought I should be there for her [the intimate partner] in the first place. If she breaks down, I don’t want to have to deal with my own grief at the same time. (SN2-P2)Providing emotional support was easier when the members of the support network were not hindered by their own feelings or were less emotionally involved . Furthermore, emotional interactions could be disrupted when one had to deal with opposite feelings stemming from different roles in an adjacent CAS, as one friend pointed out how difficult it was to support the intimate partner who was grieving since she had recently fallen in love and felt the happiest on earth.From the start, I just flipped the switch in my head and said to myself: “I must be there for her. I’ll put myself second for now. I really must be there for her. I should try to help her wherever I can so that her life will be a bit easier again.” And that’s exactly what I’ve done. (SN1-P1)Despite bad relations with the intimate partner, some family members unconditionally adhered to the internalized basic rule: one should be available for one’s family under any circumstance. For them, the quality of the relationship was subordinate to the need of being available.During the caregiving process for a patient with advanced cancer, the behavior, actions, and communication of the intimate partner’s support context evolve and adapt resiliently to the specific needs related to the cancer stage.I just know that we, my siblings and I, noticed that it all was too much for mom, with the administration, the care, and so on. So, at a certain moment, we decided to have an island council as we called it, a family council. It wasn’t my mother’s idea, but one of my sisters who arranged this. (SN4-P1)Shortly after a patient was diagnosed with advanced cancer, the communication within the support network and with the intimate partner was mostly spontaneous and open. Discussions about difficult topics such as death or dying were encouraged and old irritations were put aside. However, when the patient’s prognosis worsened, the communication within the support context often became more structured, more deliberate, and less spontaneous. One support network even established an information circuit to guarantee communication under all circumstances.And at that moment, the doctor said: “Someone has to come now [to help with the care for the patient].” So, the GP basically decided for her that it was too much right now and that she couldn’t do this all alone anymore. (SN3-P3)The internalized basic rules were reversed when the situation became too demanding for the intimate caregiver. For example, when the context members realized that the partner was getting overloaded, instead of adopting a wait-and-see attitude, they set aside the basic rule (reassuring availability of guidance and support with respect for the autonomy of the intimate caregiver) and intervened by making any necessary decisions or by taking over tasks.I stayed there once during the night. Well, in his last moments, she was never alone with him. Her daughter was there too, and I never thought it would be possible for me to stay with him until the very end, but, yeah, it felt so natural and it all happened spontaneously. I think it’s most important that he could stay and die at home, surrounded by [his loved ones] in his living room, and never alone. For her [the intimate partner] too, that must have been most comforting. (SN3-P2)The support network matched the care supply to the demands of the intimate partner. As such, when the patient’s prognosis worsened, the number of contacts increased due to an increased sense of togetherness, and the support network members often took up a shared responsibility to support the intimate partner.If I describe the team, my mother [the intimate partner] is the leader, the project manager and we are the team members. We all have different roles in this. There is [one of the siblings], who’s always the prepared reader and is the one who provides information in a way we can all understand and make use of it. [Another sibling] mirrors my mom and tends to be an emotional buffer. I’m the ice breaker. If things are left unspoken, I initiate the discussion. (SN4-P1)In the support networks, each member took on a role at their own discretion. However, in time, the networks became more organized as people took up different roles.Based on the complexity science framework, this study reveals new insights into how members of a network supporting an intimate partner of a patient diagnosed with advanced cancer interact.Their behavior is based on internalized basic rules (such as reassuring availability and maintaining communication without being intrusive), attractors , and the history of the support network. However, the interactions are non-linear and often unpredictable due to the context member’s own concerns, needs, or emotions. Nevertheless, the network’s behavior adapts dynamically to the changing circumstances as the patient’s prognosis worsens.Pype et al. 2018) [ [18] andSince the support network is self-organizing, adapts to the challenges of a worsening prognosis, and adjusts to the demands and needs of the intimate partner, it is apparent that the members’ behavior applies to the dynamics of a resilience process defined as the process of adapting well to adversity . HoweverThe interactions within the support network could even indirectly facilitate more of a resilience process by consolidating the intimate partner’s sense of coherence . As suchTo our knowledge, the current study is the first to systematically explore the behavior and interactions within the support network of a partner of a patient diagnosed with advanced cancer through the lens of complexity science. Complexity science focuses on the adaptability of a CAS, oscillating between order and chaos, while taking into account its unpredictability. As a result, this approach seemed most suitable to study patterns and interactions of the behavior of a support network that functions in a rapidly changing context characterized by unpredictability . A notewThis study was also subject to limitations. All interviewees were of Flemish descent, and the majority (17/19) were highly educated, having attained a university or university college degree. Consequently, our findings apply only to a well-defined group and cannot simply be transferred to other groups, such as people from immigrant origin or people living in non-European countries. In addition, one must be critical when applying the findings to support networks composed of family and friends who are less educated. Finally, all interviews were conducted during the COVID-19 pandemic. The fear of infecting the patient and the measures that were taken by the government unmistakably influenced the intimate partner’s resilience process . As a reBy studying the behavior of the networks supporting an intimate partner of a patient diagnosed with advanced cancer through the lens of complexity science, patterns in actions and reactions could be framed within the behavior of a CAS in accordance with the universally applicable CAS principles. The new insights stemming from this study will allow healthcare professionals to understand the dynamics of a support network in which they often participate themselves. Healthcare professionals should allow the support network to evolve and adapt as a system rather than focusing on the individual actions, including their own. Moreover, it is important to recognize the network’s emerging internalized basic rules as they emphasize the autonomy of the intimate partners as a holistic focus – in communication as well as in emotional and practical support. As such, allowing for a CAS to establish will promote a person-centered  approach . FurtherFamily, friends, and healthcare professionals can form a support network around the intimate partner of a patient diagnosed with advanced cancer. Once a support network is established, one can expect it to behave in accordance to the CAS principles. As such, the system acts in agreement to its internalized basic rules, driven by attractors. Although the behavior is non-linear and not fully predictable, the system is dynamic and resilient and adapts to the changing circumstances as the patient’s prognosis worsens. Finally, the behavior of the support network according to the principles of a CAS, appears to promote the intimate partner’s resilience process throughout the care period of the patient.Additional file 1. COREQ  Checklist.pdf The 32-items COREQ checklist for interviews and focus groups, along with the corresponding pages.Additional file 2. Inclusion and exclusion criteria – longitudinal study on resilience in advanced cancer caregiving.pdf Details on the in- and exclusion criteria of a longitudinal study on resilience in advanced cancer caregiving. Participants (intimate partners) in the longitudinal study recruited the participants (members of the support networks) of the current study.Additional file 3. Interview guide.pdf A translated version (from Dutch to English) of the interview guide on which the semi-structured interviews were based.


An increase in online and hybrid education during and after the Covid-19 pandemic has rapidly accelerated the infiltration of digital media into mainstream university teaching. Global challenges, such as ecological crises, call for further radical changes in university teaching, requiring an even richer convergence of ‘natural,’ ‘human’ and ‘digital’. In this paper, we argue that this convergence demands us to go beyond ‘the great online transition’ and reframe how we think about university, teachers’ roles and their competencies to use digital technologies. We focus on what it takes to be a teacher in a sustainable university and consider emerging trends at three levels of the educational ecosystem—global developments (macro), teachers’ local practices (meso), and daily activities (micro). Through discussion of examples of ecopedagogies and pedagogies of care and self-care, we argue that teaching requires a fluency to embrace different ways of knowing and collective awareness of how the digital is entwined with human practices within and across different levels of the educational ecosystem. For this, there is a need to move beyond person-centric theorisations of teacher digital competencies towards more holistic, ecological conceptualisations. It also requires going beyond functionalist views of teachers’ roles towards enabling their agentive engagement with a future-oriented, sustainable university mission. An emerFurther, back in 2015, the United Nations launched the Sustainable Development Goals as a universal call to action to secure peace and prosperity, ensure quality education, protect the planet, and end poverty for all by 2030  from the neoliberal university to the sustainable university; (2) from digital to postdigital; (3) from competencies to capabilities; and (4) from teacher personal resourcefulness to distributed teaching capabilities.In this paper, we address these issues through one central question: Our argument is developed through three moves. First, we develop the foundations for our perspective by elaborating on the four lines above. Next, we draw on contemporary postdigital approaches that embrace ecopedagogies, pedagogies of care and self-care to ground our propositions in emerging pedagogical movements and explore what postdigital teaching capabilities might entail within university contexts. Finally, we bring these insights together to foreground the importance of teachers’ fluency to embrace different ways of knowing and their collective awareness of how the digital is entwined with human practices across the educational ecosystem. As a part of this we argue that two fundamental shifts are critical. First, there is a need to move beyond person-centric theorisations of teacher digital competencies towards more holistic, ecological conceptualisations. Second, there is a need to go beyond functionalist views of teachers’ roles towards enabling their agentive engagement with a future-oriented, sustainable university mission. We offer this paper as an entry point for engaging university teachers and other practitioners with this broader role and transformative mission.Universities play a key role in the ongoing, sustainable functioning of society. They generate much of the scientific and technical knowledge that underpins economic progress and social change; they prepare professionals for most complex public services  and industries ; and they help us think creatively and critically about history, culture, philosophy, and the arts Connell, .Universities emerged in an era of information scarcity when access to knowledge was limited and intended for only a small elite—often people of economic means, male and white. Throughout their history, universities have been supported by underlying mechanisms that reinforce power and control, producing and reproducing certain privileged values and knowledge practices while neglecting others, promoting certain academics over others, and supporting certain students while excluding or marginalising others Boys, . The lasDemocratic: values and ways of working that relate to the university’s ability to serve “democratic purposes of the society” and place “social justice… [as a] core business for the teaching programme” (p. 171–172).Engaged: “being fully present for the society that supports the university”, where good teaching “means being fully present for the students, engaging with their actual needs and enabling their next moves in learning” (p. 172). Connell notes that this is demanding for teachers in relation to time, emotion and technical knowledge.Truthful: doing research in a truthful way and engaging in more epistemically transparent teaching practices that “emphasise how knowledge is produced and archived, helping students to test claims, challenge received knowledge, and conduct their own investigations” (p. 173).reative: foregrounding students’ agency and teachers’ imagination, offering “space for wilderness in classrooms, mad professors, and educational risk-taking—knowing that only some of them will succeed” (p. 174).CSustainable: the university’s organisation and functioning, including employment conditions, support all workers over time. This must be within the society’s “resource limits” (p. 174) and contribute to the sustainable knowledge economy as a whole by “building knowledge commons in the world at large” (p. 174).Increased access to knowledge and information through open digital platforms has brought the role and function of universities under scrutiny. Consequently, the current university system, and its teaching practices, are perceived to be in crisis or, at least, falling short of their potential Connell, . Some scConnell’s proposal allows us to envisage teaching capabilities that are needed for universities to contribute more meaningfully to the sustainable development of society.The notion of postdigital foregrounds digital technologies as part of a heterogeneous entanglement in education, as part of wider social, epistemic, material, and spatial structures, acting at multiple scale levels, from individual activities to megatrends and cultures. A postdigital perspective rejects viewing the digital as separated from material and social activity as digital information, education, networks, and technologies are always embedded in the world Fawns, . For exaOnline, hybrid, or any teaching that involves digital technologies, often have been associated with teachers’ digital capabilities. Through postdigital lenses, teaching and learning are seen as part of complex configurations of human and non-human actors, as an assemblage of elements that extends far beyond single physical classroom settings, specific digital tools and material elements, or pedagogical practices, towards a range of interconnected elements, such as government policy, university strategy, digital technologies and others  in a social context  to realise a goal that is appropriate to the context.” OECD, , p. 99Over decades, there have been numerous discussions about the meaning of terms that describe a human’s ability to complete particular tasks, such as ‘proficiency’, ‘competency’, ‘competence’, ‘capability’, and ‘expertise’ Eraut, . Such teexpected standard”  is often considered to be a more holistic term than ‘competency’ , with the latter seen as constituents of the former , local (meso), and individual (micro) levels of the educational ecosystem and are intertwined with what we can call ‘postdigital pedagogies’, to which we turn next.There is no lack of ideas in educational literature on what future curricula and pedagogical approaches may look like—pedagogies of hope, ecopedagogies, passion curricula, slow pedagogies, humanising pedagogies, university activism, etc. .Ecopedagogies have their roots in transformation-based teaching models  highlights the urgency of caring for each other, our bodily conditions, our systems and societies. A caring perspective has also been gaining momentum in higher education, calling for commitment to ethics, empathy and social justice , then we cease to be in what Noddings , 2002 woIn considering the wider educational ecosystem and how it is sustained, it is worth asking whether teachers can enact a pedagogy of care , and in the context of a fast-moving educational landscape in which new technologies are continuously introduced and abandoned. As Bussey  notes, iFurther, effective teaching in hybrid spaces is a complex, skilled activity that inevitably involves multitasking, carries extreme cognitive load, and needs to be performed publicly in front of students under pressure and stress  orientation, while pedagogies of care and self-care are primarily focused on the local (meso and micro) environment and the situated self. Nevertheless, all three perspectives focus on relations, and emphasise connections across the educational ecosystem. Thus, drawing strict lines between them would be a fundamental mistake. There is nothing at the micro level, without the meso and the macro instantiations. There is no self-care without caring for others and for the environment, and vice versa.Postdigital teaching capabilities, therefore, are distributed and relational. They involve engagement in a range of practices and performances. Conceptualising such capabilities requires that we revisit the foundations of human capability for complex performance.adaptive expertise However, useful conceptualisations of teaching capabilities cannot rely on models that see teachers’ capabilities entirely as properties inherent in an individual, be they ‘skull-bound’ cognitive competencies or products of individual agency. Useful conceptualisations must describe the capabilities that extend across an activity system which includes other people, culture (norms), environment and self as an embodied and vulnerable being. As Säljö  argued:“Indeed, theories of human cognition that look at human performance and learning in complex real-world environments are increasingly moving beyond the classical person-focussed information processing accounts of cognition which previously dominated conceptualisations of professional competencies and deliberate practice. They see human capabilities as extended, enacted, embedded, enculturated and embodied , including self-tracking tools , and these tools have increasingly become intertwined with teacher abilities to care for self, for others and for our environment. There is plenty of evidence to be optimistic about the potential of digital tools to support the values of ‘a good university’ as well as for being cautious about the power of these tools to distort these values (Williamson et al., As complex global challenges escalate, there is urgent need for changes in education. Universities can play a crucial role in finding ways to address major social, ecological and humanitarian issues. As universities ponder how to meaningfully contribute to sustainable development goals, Misiaszek  warns usThus, a fundamental teaching capability is teachers’ awareness of how the digital is entwined with human practices within and across different levels of the educational ecosystem and fluency to navigate and co-create ‘postdigital learning ecologies’. Teachers need to traverse divisions between knowledge domains, and ways of knowing, and learn to navigate complex contexts; they need to be attuned to self and others, and to co-configure hybrid environments in ways that enable joint distributed activity (Markauskaite & Goodyear, Further, the functionalist views of teachers’ roles and their digital competencies, which are often driven by the market-oriented goals of universities, need to be expanded. Sustainable universities need to address concerns of contemporary times. This requires teachers’ agentic engagement with a future-oriented, sustainable university mission, which is at its core postdigital.