A description of the complexity of the process of self-management and the way stroke survivors give meaning to their process of self-management post-stroke is lacking. This study explores how stroke survivors managed their lives, gave meaning to their self-management post-stroke and how this evolved over time.Data was generated through participant observations and interviews of 10 stroke survivors at their homes at 3, 6, 9, 15 and 21 months post-discharge. A constant comparative method was chosen to analyse the data.‘Situated doing’ was central in stroke survivors’ simultaneous development of self-management and their sense of being in charge of everyday life post-stroke. Doing everyday activities provided the stroke survivors with an arena to explore, experience, evaluate, develop and adapt self-management and being in charge of everyday activities and daily life. The influence of stroke survivors’ partners on this development was sometimes experienced as empowering and at other times as constraining. Over time, the meaning of self-management and being in charge changed from the opinion that self-management was doing everything yourself towards self-managing and being in charge, if necessary, with the help of others. Moreover, the sense of self-management and being in charge differed among participants: it ranged from managing only at the level of everyday activities to full role management and experiencing a meaningful and valuable life post-stroke.The findings of this study indicate the doing of activities as an important arena in which to develop self-management and being in charge post-stroke. Stroke self-management programs could best be delivered in stroke survivors’ own environment and focus on not only stroke survivors but also their relatives. Furthermore, the focus of such interventions should be on not only the level of activities but also the existential level of self-management post-stroke. Self-management is recognised as an increasingly important concept in stroke rehabilitation programmes –3. Self-Several longitudinal qualitative studies with stroke survivors reported how the process post-stroke involved restructuring and adapting physical, social and emotional aspects of an individual's life; social and emotional consequences were identified as the largest problems in daily life for stroke survivors during this process –12. StroAlthough several findings of the aforementioned qualitative studies can be linked to stroke survivors’ self-management, none of them focussed specifically on the complex process of self-management post-stroke from a stroke survivors’ perspective. Furthermore, many longitudinal qualitative research projects studied stroke survivors up to one year after the stroke , 17–20, It appears that an explicit description of the complexity of the process of self-management and the way stroke survivors give meaning to their process of self-management up to two years post-stroke is lacking. To unravel the complexity of self-management in stroke survivors’ everyday life, we designed a prospective study with multiple points of data generation over a period up to two years post-discharge. This offers the possibility of analysing the process of self-management more in depth, as serial qualitative interviews offer considerable advantages over the more typical single ‘snapshot’ techniques in understanding patients’ changing experience of illness . MoreoveTo understand how stroke survivors manage their lives and give meaning to their self-management in the first two years post-discharge, a longitudinal qualitative study has been conducted by applying a constructivist paradigm . The stuIn a period of 8 months, participants were consecutively recruited from stroke units from two rehabilitation centres. Potential participants received a letter with information about the aims and procedures of the study. Purposive sampling  was usedTwenty participants living in the east and south of the Netherlands have been approached for the study, and fourteen participants were interested in participating in the study. These participants have been visited by the first author and researcher (TS) and additional information was provided. Three participants did not meet the inclusion criteria: two participants had a HADS score higher than 8, and one participant had insufficient communication skills to participate in the interviews. One participant dropped out after the first moment of data generation. Ten participants participated in the study and represented a heterogeneous sample in terms of gender, living alone or with a partner, and left- and right-sided stroke  generated the data. Both were occupational therapists with experience observing persons with neurological conditions in daily activities at home and expertise in qualitative research.The participant observations were mainly in or around participants’ homes but also at other locations, such as a workplace, health care centre, local park, supermarket, or a lunch room. A variety of daily activities and situations were observed , but doing also involved fear, saying farewell and grief .So that’s what you experience, and that’s what you have to deal with…that’s how it goes. Without facing it you can’t know it” [7–2]. Not all participants reacted or learned from their experiences. During some participant observations, a few participants showed minor disabilities which they did not notice or correct, such as the participant [3–1] who did not use a new coffee pad in her single serve coffee machine whilst she was preparing coffee while at the same time talking to the researcher. During the interview, the participant trivialised this and said that she had not noticed this and that it was not a big problem for her because she could still manage to make coffee.While the participants were doing daily activities, different processes of self-management happened simultaneously, and through the ‘doing’, the participants experienced what self-management meant for them. ‘Doing’ provided participants with experiences that related to stroke—consequences, possibilities and disabilities in activities and situations, interaction with other persons, or receiving or asking for help. The ‘doing’ was the gateway to these experiences, and through these experiences most participants could learn. For example, one participant expressed: “Within your familiar context you do things in a certain way, and then you realise that that method doesn’t work anymore. Not only because of physical limitations but also because of the context, the others around you, the practical aspects of the situation being different than what you had in mind. The context does not allow you to do what you had in mind” [10–2]. Based on the experiences and appraisal of their ‘doing’, participants could decide to adjust their activity performance. One participant expressed: “Just trying to do the things you used to do, and if it doesn’t work out, it doesn’t work out. Then you try to do it in a different way” [4–5]. Through experimenting with alternative ways of performing activities, several participants experienced how they could still manage their daily activities but often differently than they did pre-stroke. One participant told how the housecleaning had changed over time post-stroke: “I have become much more calm. First [pre-stroke-TS] I cleaned the silver or the copper very often, now I only polish it when it is dirty” [3–3]. Through involvement in activities, participants learned how to self-manage, and this consequently supported participants’ sense of being a self-manager who could do everyday activities. This developed gradually, and through the ‘doing’ the participants experienced a sense of relative mastery. These experiences gave the participants access to further development, meaning that they could change and become the person who could manage disabilities, activities and, finally, self-manage their everyday life again.However, daily activities helped most participants understand how to manage their own situated doing: ““Independency and being able to practice it” [6–1] and “Try to manage everything yourself” [2–2]. This transition was not easy for participants, many of whom felt lost post-discharge because they had missed coaching and support in self-management in their own environment directly after discharge.With the ‘doing’ as a facilitator, the participants experienced and developed their self-management abilities in different ways. Over time, the meaning of self-management changed. Initially self-management connoted Self-management gets more and more meaning. Before, self-management was planning…now I touch upon a deeper sense. Choosing between what comes on your path, does it feel right? What will it bring me? …in relation to my recovery to feeling better” [9–3]. Finally, for most participants self-management meant that they could manage and direct their everyday life and do the things they wanted to do, like how one participant expressed that “Self-management is about doing what matters to me. That I can do what I want and that that is okay” [3–5]. Knowing what they were able to do post-stroke made most participants more confident in managing themselves; however, some participants discovered that that they could not do what they wished to do. During an observation, Participant 5 said she used to be able to manage several single activities, but that, eventually, she was not as active and could not do what she wanted as she used to do pre-stroke. She pointed to the Christmas tree in her living room and expressed that social activities around Christmas were fewer than what she did pre-stroke and that she was only sitting at home during the holiday. In the interview that followed, she said that she really missed having access to a person who could assist in finding new meaningful activities post-stroke.The value attributed to independence in the context of self-management became less whilst the importance of meaning in choice attributed by participants in everyday situations increased. For example a participant said: “Self-management is taking charge of your own life” [8–4]. Through the ‘doing’ she became a self-manager and felt empowered to direct her own life. Moreover, the participants who expressed a strong sense of self-management showed during observations that they interacted fairly well with their environment. They dared to ask for help and arranged facilities to optimise their mobility. Furthermore, they dared to decide not to do certain activities, even when it was still possible, as participant 7 expressed about her administration. During an observation, she presented letters from several authorities and reported that she had asked her daughter-in-law to do her administration. This participant perceived herself as a good self-manager and said that deciding not to do something any longer was also part of that.Individuals varied regarding the scope and level of self-management. The sense of being a self-manager differed per participant and depended on several factors, such as participants’ abilities to self-manage, their perception of self-management, their personality pre-stroke and the interaction with their environment. Some participants talked about self-management as self-managing on the level of activities. Other participants perceived it more broadly, as they strived to be engaged in a meaningful life and meaningful roles. One participant who, despite her severe stroke, was able to self-manage together with her partner and focused more on managing and directing her own life said: “Because my whole life is turned upside down… So how can I answer how I am going to approach it. I don’t have a clue; I have to experience it all, in order to know what works or doesn’t work” [7–2]. Although individuals varied in the type and timing of strategies, medical, role and emotional management strategies were mostly interwoven. However, in the first post-discharge period, self-management strategies were more related to medical management of the stroke consequences. The most often-heard strategies involved pacing to manage fatigue and using a shopping list and agenda to compensate for the minor memory problems. Several participants experienced invisible problems. One participants explained: “I experience regularly that I suffer from ‘fatigue in my head’, too much tingling, and eh, it feel as everything is tickling, entering hard and loud, so that is difficult” [9–2]. Regarding ‘invisible problems,’ such as concentration loss or hypersensitivity for sensory stimuli, the ‘doing’ also provided the participants with experiences and consequently with a better understanding of the real stroke consequences and possible strategies to cope. Remarkably, several participants who experienced invisible problems did not explicitly talk about them during the first encounters. It seemed that it took some time before the participants became aware of and understood their invisible problems. Moreover, only one participant had received additional coaching to manage the invisible problems. None of the others had received professional coaching but had just learned to manage their invisible problems by trial and error in daily life.‘Doing’ was also essential to develop strategies. Through the ‘doing’, the participants became aware of their limitations post-stroke and possibilities to manage them. Several participants stressed that doing activities at home was needed to experience and learn strategies, like the woman who reflected on exercises and strategy training in the rehabilitation centre and explained that she had to experience it herself: “So when I go see my family, I ask myself the question: what is the easiest and safest way to get there?” [4–3]. Many participants mentally planned the activity before the actual ‘doing’. Although most participants learned step by step to self-manage their everyday activities, there were also situations where participants were not successful in self-managing. An example of this occurred when a researcher arrived for a visit at a participant’s home and the participant was in panic [9–5]. At the same time the researcher arrived, her new cat had knocked over several objects in the kitchen and the phone rang. The participant needed the researcher’s help to calm down and get a grip on the situation again. Later on in the interview, the participant explained that post-stroke it took her more time to solve problems, to self-manage these situations and to relax afterwards. She expressed: “When everything comes together, like the cat who made a mess in the kitchen, my daughter with a difficult question on the phone, and just being tired… then it is not easy. I need more time in those situations to understand what to do” [9–5].Gradually, the understanding about their stroke consequences and their strategies to cope increased. In the first interviews post-discharge, several participants expressed how their limitations were not clear and sometimes just happened to them. During the last interviews, the participants expressed that they had learned which strategies worked for them to compensate for the limitations. Instead of being surprised and reactive, most participants became proactive and were able to manage themselves and their activities: “On a regular basis I take out something ready-made … typically stew, stir-fried or vegetable dishes, so always meals you can prepare with one hand” [6–3]. After a while the strategies became part of participants’ routines in daily life. Eventually, all participants related their self-management strategies to activities of daily life. Self-management strategies were embedded in and got meaning out of everyday activities. Participants rested before going to the theatre; they asked for help in a shop to buy their groceries for cooking or they switched off their emotions to be present at a birthday party. Although the strategies eventually helped the participants manage and do their everyday activities, several participants still felt that the strategies were insufficient to fulfil all valued roles as they did pre-stroke. Participant 8, for example, expressed sadly how she could not be the grandmother she was before the stroke: “If I think for example about the things I cannot do anymore with my grandchildren, that makes me sad. Yes, as a grandmother you wish to be a nice grandmother, and I think I was. If they went swinging, grandmother joint them. … Well, I cannot do that anymore and that makes me sad” [8–2].After participants had learned strategies to self-manage the stroke-consequences, the participants gradually related their strategies to the performance of more demanding activities. One participant expressed how he cooked again for his wife and friends, but the recipes and ingredients had changed: ““It happens on occasions that I am too tired, and I am just lying down with a book on the sofa. When I do that because I am too tired to do something, I enjoy the rest” [1–5].Some strategies took on other meanings over time, especially that of taking rest. Initially, rest was perceived as an extra activity performed before or after a daily activity; participants had to get used to it. In later interviews, participants’ resting had become integrated in their daily routines. Rest now had a positive meaning; one participant expressed: Self-management … it is all about directing your own life” [7–4]. Participants became in charge in different areas. First, by using strategies, the participants became in charge of their stroke consequences during their ‘doing’. Subsequently, the ‘doing’ supported participants’ sense of being in charge of their daily activities, like a participant expressed in relation to his self-care: “A fundamental transition was regaining the ability to choose myself when I go to the restroom because it became physically possible again” [6–1]. The experience of mastery of activities was satisfying for most participants: “For example, doing stuff in the house that requires some efforts, e.g., sorting out clothes … that gives me satisfaction. The ability to do things for myself and by myself” [8–2]. Moreover, the sense of being in charge of activities also gave the participants the confidence to create, manage and become in charge of other new and engaging activities. A participant who had woodwork as a hobby said: “I appreciate discovering something new again, like new tools, how do you use them … what is the mechanism behind them, how do you make it, how can you improve it?” [2–2].When the participants talked about self-management, many simultaneously talked about their sense of becoming in charge. One participant stressed in her last interview “The last thing I reclaimed was the coffee machine … and I have done that all by myself. When she comes home from her work coffee is ready, and that … she can’t take that away” [2–3].Another way participants became in charge of activities was doing activities earlier than their partner did them. They related this to attaining ownership of single activities through ‘doing’. When they did the daily activity before, it could have been taken over by their partners; it gave them a feeling of ownership and sense of being in charge of the activity again. One participant said: “In the morning I am full of energy and do a lot of things. In the afternoon I am just too tired to do things” [6–4]. Being in charge of single activities was one thing, but being in charge and finding meaning in post-stroke everyday life was something else. Several participants had expressed in interviews how their “life was ending” [2–2] or had lost meaning and was “just babbling on” [6–2], although participant observations had showed how they self-managed and were in charge of single activities independently.With regard to becoming in charge and directing their lives, most participants expressed that they gradually had become the ones who decided what, when and how they could do something. However, for some participants, being in charge was easier said than done, such as a participant who explained: “In the end you do meet new people again. Slowly but surely your little world expands, and I am proud to say out loud: that’s my own merit” [7–4]. Through increasing mobility, the participants could more easily decide themselves when and where to go, and this gave the participants a sense of being in charge of their social life. To the contrary, not all participants could easily arrange assistive devices such as a mobility scooter or an adapted car. Often participants needed good interactive skills and an understanding of their insurance or municipal regulations, which was not easy for every participant.Regarding the sense of being in charge and directing their lives, mobility was a specific aspect. Mobility was not only the ability to walk, but also, for example, the ability to drive a mobility scooter or a car. Increasing mobility gave the participants possibilities to broaden their world and to decide and feel in charge of when and where to go. The ability to go outdoors independently was for some participants related to their physical recovery, and for others also to the use of resources and arranging mobility scooters, adequate wheelchairs or adapted cars. One participant expressed how the mobility scooter had empowered her to expand her social life again: “Receiving support as part of self-management was a topic that came back in all encounters. How much support was needed was only determined in the actual ‘doing’. In the first period post-discharge, several participants perceived the help of others as necessary. Although most participants felt uncomfortable receiving or asking for help, they realised that without the help of others, they could not manage and complete an activity or go outside their house. However, over time, participants’ attitudes towards the support of others in relation to their own self-management changed.Of course I’d prefer to do everything myself, but when I can’t, then I find it easy to delegate it and to give somebody else the instructions how to do it” [1–5]. For most participants, asking for help or getting help no longer denoted dependency on the other person, but asking for help was part of their self-management, like another participant expressed: “Asking for help is a learning process. I decide when and how much help I receive. Support is part of the game” [6–4]. They asked by choice and not as a result of need.Gradually, the support of others was perceived differently by the participants: from help which was needed in the beginning post-discharge towards help which was not necessary or sometimes even unwanted. Moreover, through their ‘doing’ and interaction with others, the participants developed another sense of being in charge of support, compared with the feeling they had just after their stroke. In the last interviews, several participants who still needed certain support expressed that asking for help still felt uncomfortable, but that they now perceived themselves as the ones who were asking for help or who could even instruct their partners how to do activities. Like one participant reflected: “It is about having a dialogue about it, I mean, I just can’t decide on my own to do one thing or another. And when she [partner—TS] wants to do something, then share what the plans are. I believe we both found a good balance between us again” [6–4]. In most cases, both partners were involved in co-managing daily life and out of reciprocity they also considered how to take care of each other. It was a give-and-take, and often the balance was experienced as positive and supportive. However, a few participants explained how they did not always feel supported to self-manage and become in charge. They related this often to their partner who helped too quickly. In most cases, the spouses could discuss this, like a participant expressed: “I tell him: ‘I want you to give me more space to do things myself. Instead of encouraging me to do something, you are telling me that you will do it… and I want to do it myself’” [1–2]. On the other hand, some participants felt less empowered to self-manage and be in charge of daily activities by their partners. In the last interview, participant 5 expressed that she did not do so much at home, but in a joint interview, her husband expressed that he had taken over the household and shopping because that was his way to self-manage. There was not much interaction about each other’s experiences, and the participant said that they had stopped talking about it.In and through their ‘doing’, participants interacted with other persons and developed ways to self-manage or to co-manage with their partners. Most couples needed time to share experiences and discuss how to co-manage certain situations together. One participant expressed: “If you have difficulties to ask for help, then self-management will get difficult” [6–3].Regarding the interaction in relation to self-management, several participants expressed that communication was an important skill in self-management, especially communication in relation to arranging resources and asking for help. One participant expressed that “The current findings support the individual, dynamic and contextual nature of self-management , 32, 33.Several participants used strategies proactively to self-manage stroke consequences when preparing and exploring new or challenging activities. This finding supports the assumption of Tielemans and colleagues  about thAnother finding of the current study is how the meaning of self-management and being in charge changed over time. Initially, our participants connected self-management with doing everything themselves, if possible, without any help. Eventually they experienced asking for help not as a result of need, but as a result of choice and felt in charge. Regarding the sense of being in charge, our findings support the study of Kubina et al. , who desAs in other studies , 14, 39,Concerning the scope of self-management and being in charge, there were differences among the participants. The findings of this study revealed that creating meaning in life after stroke was not easy for every participant. Although several participants felt able to self-manage a new life with meaningful activities post-stroke in the second year post-discharge, this was not experienced by all participants. Some participants only experienced ‘self-managing the practicalities of life’, but not on an existential level of living with a stroke and creating meaning in life. The different levels of self-management post-stroke reflect the findings of a focus group study among allied health professionals about stroke self-management . HoweverThe number of participants is limited and restricts the generalisability. Although diversity was achieved in gender, living conditions and disabilities, the sample does not represent the general population of stroke survivors. Participants with severe cognitive impairments and severe communication problems, or participants who were dependent on others for their mobility, were not represented. However, the findings of this study reveal how a certain group of stroke survivors self-managed and gave meaning to their self-management post-stroke. This can be applied to other stroke survivors or contexts. One strength of this study was the extended period of data generation which provided the stroke survivors with the possibility to reflect on their own process of self-management post-stroke . AlthougOn occasions where partners were present, data generation was adapted to include the partner in the interviews or observations and to capture the interaction between the stroke survivor and the partner. Furthermore, reflective meetings with all authors to discuss the analytical process and the preliminary and final themes enhanced the credibility of the study , 44.This study aimed to explore stroke survivors’ self-management post-discharge. The findings indicated that situated doing was central in stroke survivors’ simultaneous development of self-management and the sense of being in charge of everyday life. This process was individual, dynamic and contextual, in which the interaction with the partner was experienced empowering in some situations and as a constraining factor in others. It did not appear possible to describe a general scenario for the development of self-management and becoming in charge of everyday life. Experienced levels differed among participants, ranging from only managing at the level of everyday activities to full role management and experiencing a meaningful and valuable life post-stroke. Individualised self-management programs for stroke survivors, together with their relatives, should be offered post-discharge in stroke survivors’ homes to coach stroke survivors and their relatives in the development of self- and co-managing with the doing of everyday activities as an essential determining part of everyday life. Moreover, stroke self-management programmes with more existential content should also be considered after about one year of living at home to address the need of stroke survivors to live a meaningful life post-stroke.


We aim to extend current knowledge on associations between stressful work and sickness absence, first, by studying associations between ERI and sickness absence among full-time employees from various occupations, and second, by investigating if associations vary by age.We use data from four waves of the German socio-economic panel (GSOEP), collected among men and women between 2006 and 2012, with 9418 observations. Stressful work is measured with a short form of the ERI questionnaire. We investigate an imbalance between effort and reward (ER ratio) as well as the two main components (“high effort” and “low reward”). Sickness absence is measured by self-reported number of sickness days (assessed the following year). After descriptive analyses, we estimate a series of multivariable regressions, including tests for interactions between age and work stress.Each of the three indicators of stressful work is related to higher number of sickness days, with except of “high effort” in case of men. Findings remain significant after adjusting for social position  and health. In addition, for both men and women, associations were slightly higher among older workers, though interactions did not reach statistical significance.Our findings support that stressful work is linked to sickness absence across a wide spectrum of jobs with varying incomes and educational levels, and also that associations are slightly more pronounced among older workers.The online version of this article (10.1007/s00420-018-1298-3) contains supplementary material, which is available to authorized users. Sickness-related absence from work is a major concern of today’s labour markets and ageing workforces in Europe. For example, according to Eurofound, the average rate of sickness absence in the European Union varies between 3 and 6%   Steel .We distinguish four age groups for the analyses, each covering a distinct phase in the life course , three indicators of the respondent’s social position , and self-rated health. In the case of partnership, we use a binary indicator of whether the respondents live with a partner . The number of young children (aged 14 or younger) is regrouped into “none”, “1” and “2 or more”. As an indicator of education, we use the total years spent in full-time education. Income is based on the monthly household income that we adjusted for household size in accordance with the OECD equivalent-scale , and show predicted values in Fig. The sample described in Tables p values below 0.05 . Turning to income and occupational position, it is worth noting that only low reward follows a social gradient . In case of sickness days, however, a disadvantaged occupational position is related to more sickness days. Finally, we see that days of sickness absence and levels of work stress are higher amongst people with poor health. In all cases, the reported associations are statistically significant, with Table Table To formally test interactions between work stress and age groups, Table This study used data from the GSOEP, collected among employed men and women in Germany, and investigated how stress at work  is linked to subsequent number of sickness days (assessed 1 year later). In addition, the study compared associations of stress at work and sickness days between different age groups. According to these two research questions, two major findings result from our analyses: First, we found clear support that stressful work is linked to a higher number of sickness days. Yet, while this was true for each of the studied indicators in case of women , we found no association for high effort in case of men. Importantly, associations persisted after accounting for three indicators of social position , and additionally, they remained significant after adjusting for individual health at baseline. The second major finding was that associations were generally stronger amongst older worker, both for men and women. In analyses testing formally for effect modification, though, interactions between age and stress at work did not attained statistical significance.Overall, our findings are in line with previous studies, specifically studies linking a effort–reward imbalance with sickness absence , we extend existing evidence that was so far restricted to cross-sectional findings , our study points to interesting sex differences. Perhaps, men who report a high level of effort feel very committed to their work [with a high “motivation to attend” . Researchers, for example, have suggested that it is not only the low “ability to attend” that explains why stressful work leads to higher sickness days, but also that the “motivation to attend” matters as well , we have to consider several limitations. First, the measurement of work stress was restricted to one time point only. Because every person may be exposed to stress at some point in his or her life course, this not only includes people who are chronically stressed at work, but also people who are only occasionally stressed. As such, more comprehensive measures of work stress would be desirable, for example, repeated exposures or a measure that consider exposure duration as well. Second, our study was restricted to people who were full-time employed, and thus, we excluded an important fraction of todays’ labour market in Germany, that is, part-time employees, as well as employers and self-employed people. However, because self-employed people are not automatically eligible for statutory sick pay in Germany, they may represent a specific group of workers who deserve attention in another study. Third, some may argue that self-reported data on sickness absence (as used in our study) are prone to recall bias and less reliable than administrative records. Studies comparing both types of data, though, generally found high levels of agreement between both sources


Dc, when there is no costly punishment applied, increases average payoff. (3) A synergy of diversity and decreasing density of connectivity favors cooperation in a biological network. Furthermore, this study also suggests a likelihood from empirical findings that spatial structures may not be favoring cooperation, as is the widely-accepted notion, but rather disfavoring defection in the global scale.It has been an old unsolved puzzle to evolutionary theorists on which mechanisms would increase large-scale cooperation in human societies. Thus, how such mechanisms operate in a biological network is still not well understood. This study addresses these questions with empirical evidence from agent-based models designed to understand these network interactions. Repeated Prisoner’s Dilemma games were designed to study how costly punishment, diversity, and density of connectivity interact to influence cooperation in a biological network. There were 1000 rounds in each game made up of 18 players engaged in pairwise relationship with their neighbors. This study shows three important interactions. (1) Introducing diversity to costly punishment favors both cooperation and defection, but not vice versa. Introducing costly punishment to diversity disfavors defection but favors cooperation. (2) Costly Punishment, alone, disfavors defection but decreases average payoff. Decreasing the density of connectivity,  Some studies have shown that costly punishment could favor the emergence of cooperation8, whereas other studies have rather shown that cooperation is not always favored9. Cooperation is important because it sustains everyone in the network, as opposed to defection, which sustains the defector alone. In fact, it is an established fact that the evolutionary success of our species is largely because of our evolved capacity to cooperate12. Hence, defectors certainly obtain higher net payoffs than cooperators but it is obvious that a network having solely defectors is not sustainable. Punishment has long been suspected to be a potential ‘curative’ to defection; however sometimes, this punishment could be costly14. Costly punishment is simply paying a cost, α, to detract a payoff of β from another player. Designing human experiments to understand these interactions has advantages, but also constraints. Some of those constraints are (1) social and cultural bias could extensively impact experimental results. There have been studies that show that the emergence of cooperation or adoption of an evolutionary mechanism is partly affected by the societal or cultural characteristics17. Also, people who hold strong ties to each other are more likely to cooperate than defect18. Thus, there is more room for bias with human experiments. (2) The researcher has little control over variables and may not be able to freely isolate the effect of certain parameters. (3) There is a limitation on data size, a very common constraint with human experiments. Large enough data size is needed to counteract misleading effects of randomness. These constraints have led to different conclusions in the literature on the influence of punishment on cooperation19 and on the influence other network features, like diversity, have on cooperation for different games and populations21. Biological networks are complex systems, and counteracting or reducing these three constraints would give us a clear image as to how these mechanisms play in the system and recurring patterns that govern these interactions.Evolutionary theorists have long pondered the mechanisms that favor emergence of cooperation in a biological networkk other players in a particular round of a game, then Player A would perform k different pairwise Prisoner’s Dilemma games in that round. Just like in Gomez-Gardenes et al22, before each round, each player considers the payoff of its neighbors (other players connected to that player) and copies the strategy of the neighbor with the highest payoff, given that it is higher than his. A game would end under two conditions (i) if all players assume the same strategy, or (ii) after 1000 rounds, there still exist more than one surviving strategy in the network, in which case, the game is said to be in an equilibrium/ ‘No Preference’ state. Since 1000 is the optimal number of rounds after which almost no change is observed, a network existing in an equilibrium/ ‘No Preference’ state remains in this state even if the number of rounds is increased from 1000 – almost no change would be observed. The bar chart produced after the simulation is run gives the number of times (the probability) a strategy emerges as the sole surviving strategy of the system in all 100 games, or how many times a round is completed without all players assuming the same strategy - the equilibrium/ ‘No Preference’ state. The payoffs were calculated following Dreber et al23. Cooperation meant paying 1 unit for the other player to gain 3 units. Defection meant gaining 1 unit at the cost of 1 unit for the other person and costly punishment meant paying 1 unit for the other person to lose 4 units. Table To circumvent these constraints, an agent-based model of repeated Prisoner’s Dilemma games was designed in this study to understand the interactions in biological networks. I designed 100 games and each game had 1,000 rounds. This appeared to be the optimal number of rounds in a game since increasing the number of rounds in a game from 1000 does not affect the result. 18 players were used for the results presented in this paper, and the number of neighbors, k, varied randomly per player. Players are represented as nodes in a graph, and their connections with other players are represented as edges. In every round, each player interacts in a pairwise Prisoner’s Dilemma game with his neighbors. In other words, if Player A is connected to Dc, is simply the total number of edges in the connected graph. This is a very important feature that is, unfortunately, not well explored in the literature. The density of connectivity was varied to understand its impact in a biological network. In varying the density of connectivity, the number of nodes/players, N, in the network was multiplied by some variable, f. That is,The density of connectivity, Dc is varied within the range of N − 1 (which is the least density of connectivity) to f:Given that we must always have a connected graph, For the least density of connectivity, we have:For the highest density of connectivity, we have:f falls within the range, Hence, from equation  and equa24. Decreasing the density of connectivity, Dc, when there is no costly punishment applied, increases average payoff. Decreasing Dc also reduces the probability of the dominant strategy in a network, as is demonstrated in this study. In a fully connected graph, defection is the dominant strategy, hence decreasing Dc would disfavor defection and allow emergence of some cooperators in the network. Studies by other researchers that is consistent with this result show that limiting the amount of interaction among agents would allow the survival of cooperators, as these cooperators tend to form clusters that protects them from exploitation or invasion by defectors25. (3) A synergy of diversity and decreasing Dc favors cooperation. Many studies give support to the influence of diversity on the emergence of cooperation29. In this study, we show that cooperation is even further amplified as Dc decreases. Unlike at the local scale, which is the level of analysis of many previous experimental work on human cooperation in biological networks, the evolutionary strategy is not binary at the global scale. That is, at the local scale, a player may either cooperate or defect; however, at the global scale, we could observe cooperation, defection, or the equilibrium/ ‘No Preference’ state (where at least two strategies coexist). Hence, disfavoring one strategy, such as defection, would mean favoring the other strategy, cooperation, at the local scale since it is binary. However, the same logic can be deceptive at the global scale, since disfavoring one strategy, such as defection, would not necessarily mean that cooperation is “solely” favored. Disfavoring defection at the global scale, whether resulting in an equilibrium state or a solely cooperative strategy, invariably means that more cooperators are in the network, but not necessarily that cooperation is favored. In other words, the fact that cooperation is favored at the local scale does not mean that it is also favored at the global scale. Therefore, introducing costly punishment alone in a network would disfavor defection but may not necessarily solely favor cooperation. For this reason, it can be misleading to draw conclusions from associations in complex systems observed only at the local scale, as opposed to both the global and local scale. Gracia-Lazaro et al20 carried out a human experimental study showing that players defected more than they cooperated when playing a Prisoner’s Dilemma game in a heterogeneous and diverse network. On replicating their experiment on square lattices, my study suggests that this is true at the local scale. However, at the global scale, this study shows an interesting scenario of nonlinearity where cooperation emerges as the more likely sole strategy in a square lattice spatial structure with diversity. Nonlinearity is a typical feature of complex systems where the whole is more than the sum of its parts. In the replication of this experiment, we observe a very similar pattern to the interaction we see when diversity is introduced to costly punishment. With spatial structures, introducing diversity also favors both cooperation and defection at the global scale. However, since we have seen that costly punishment introduced alone interacts in a network by disfavoring defection but not necessarily solely favoring cooperation in the global scale, this study proposes the possibility that spatial structures at the global scale also disfavor defection. This is consistent with the widely-accepted notion that spatial structures favor cooperation31; although at the global scale, as proposed in this study, we say it rather disfavors defection.The unique relevance of this study, as it concerns addressing the question of evolutionary theorists on cooperation, is that with the power of larger data or sample size, we can observe how evolution occurs not just at the local scale, but also at the global scale. Therefore, we can draw probabilistic predictions on the evolution of cooperation or defection in the network when certain parameters are changed. In this study, the parameters manipulated to understand interactions in a complex biological network were diversity, density of connectivity, and costly punishment. This study does two important things. Firstly, it suggests three interactions that occur at the global scale of a biological network, and secondly, it suggests that spatial structures have a similar network interaction as costly punishment. This study suggests that the following three interesting interactions occur at the global scale in a biological network: (1) Introducing diversity to costly punishment favors both cooperation and defection, but not vice versa. However, introducing costly punishment to diversity disfavors defection but favors cooperation. (2) Costly Punishment, alone, disfavors defection ; nonetheless, it decreases average payoff. There are empirical and theoretical studies that show evidence that punishment is effective against selfishness in groups where most members are defectorsMy results suggest the following important relationships in a repeated Prisoner’s Dilemma game:Diversity is implemented by randomizing the connection of players in the network and how many people a player is connected to in each round of a game. Figure For f = 1.5D are defectors, P are punishers, and C are cooperators. Graph plotted with NetworkX Python Package. Defector, cooperator or punisher assignments to nodes were done randomly. The degree and connections of nodes were also randomized, using only the density of connectivity. Equal number of cooperators, punishers, and defectors  were assigned to the left panel while equal number of cooperators and defectors (nine of each) were assigned to the right panel.et al23 also reported a similar consequence of costly punishment on average payoff. With lower values of f, we would also expect lower average payoffs; however, this is not the case without costly punishment. Decreasing the density of connectivity, Dc, when there is no costly punishment applied, increases the average payoff. Superficially, this is a surprising result because decreasing Dc when there is no costly punishment causes a decrease in defection, the dominant strategy, and favors the equilibrium/ ‘No Preference’ state just in the same way as decreasing Dc when costly punishment is applied. On closer inspection however, we find that this is not surprising at all. The results from the agent-based model show that the equilibrium state for both are different. The equilibrium state for the network without costly punishment consist of only defectors and thriving cooperators with high payoffs that compete just as well as these defectors; whereas the equilibrium state with costly punishment consist of defectors and punishers, with defectors having low payoffs and punishers having even much lower payoffs from the costly punishment. Figure Dc decreases defection, the dominant strategy, in favor of the equilibrium state.Results from the model show that at any given value of f, introducing costly punishment alone (without diversity) decreases defection and favors an equilibrium/ ‘No Preference’ state. Thus, this goes further to demonstrate why ‘disfavoring defection’ does not necessarily mean ‘favoring cooperation’ at the global scale. However, since defection gives the highest payoff, introducing costly punishment alone comes at a price - average payoff decreases significantly. Dreber 32. In fact, we would only need one mutant defector in the network to make defection emerge as the sole surviving evolutionary strategy for any number of N. This makes sense if we consider the expected value (E.V.) of the payoffs for cooperators and defectors.From results from the computational model, we see that decreasing f, gradually, from Nc to to be the total number of cooperators, and Nd to be the total number of defectors. In a fully connected network, every cooperator, Ci, is connected to Nc − 1 other cooperators and Nd defectors, and every defector, Dj, is connected to Nd − 1 other defectors and Nc cooperators. Then, expected value of payoffs using the payoff matrix in Fig. Let’s take Nd to be equal to 1 . Diversity plays a role by converting this equilibrium/ ‘No Preference’ state to cooperation. Diversity alone cannot favor cooperation since at a fairly high value of f, inducing diversity does not really help or change anything since the network is almost fully connected or homogeneous. In a similar vein, decreasing density of connectivity cannot on its own favor cooperation as well, but will only favor cooperation in synergy with diversity which would convert the ‘No Preference’ state to cooperation. Figure N = 18.Equation  and equaf of 2.4 still gives a network that is almost fully connected (homogenous), diversity does not influence cooperation as there is no equilibrium state to transform to the ‘Cooperate’ strategy so do not observe cooperation when we introduce diversity. Hence, diversity cannot influence cooperation on its own. If we increase the number of games to 10,000 games though, we would be able to observe some cooperation with a very probability (less than 1%). With much higher values of f, this becomes less likely, and defection would remain the sole strategy. However, with much lower values of f, defection is disfavored for an increase in the equilibrium/ ‘No Preference’ state. When diversity is introduced, this equilibrium/ ‘No Preference’ state is transformed to cooperation. If costly punishment is introduced, we observe something different since we know that costly punishment when introduced alone favors the equilibrium state over defection. This would mean that we would have an enhanced equilibrium state with decreasing Dc. But this equilibrium state is not one which can be directly transformed to cooperation when diversity is introduced because, as discussed in (II) above, this equilibrium state consists of ‘punishers and defectors’ rather than ‘cooperators and defectors’. However, we expect to see an enhancement of cooperation due to the synergy of costly punishment and diversity; we should also expect defection to be favored with introduction of diversity to costly punishment as discussed in (I). Figure N.Like the result shows, since an et al20 conducted experiments with square lattices and heterogeneous networks to conclude that heterogeneous networks do not favor cooperation when humans play Prisoner’s Dilemma games. This study however shows that diversity or heterogeneity in a network favors cooperation but only in synergy with decreasing density of connectivity. There are studies in other areas of research where some diversity in a network have contributed to the promotion of cooperation in Prisoner’s Dilemma games34. I created an agent-based model of a 25 × 25 square lattice, with 625 players, to investigate these rather conflicting results just like they did. I kept the number of neighbors constant at k = 4, but varied the players at every round of the game. In this case, this was the experimental treatment group; the control treatment group did not have variations with the players in each round. The only major differences were (1) the payoff matrix was calculated following Dreber et al23 rather than Grujic et al35 (2) they conducted human experiments; whereas I used computational agent-based models (3) They looked at rounds ranging from 50 to 70 of 1 game for both networks they analyzed while I looked at 100 games, each having 1000 rounds. Players copy the strategy of connected players in their network, and a game would stop if all players have the same strategy or 1000 rounds were completed. Updates are synchronous and the game begins initially with 313 defectors and 312 cooperators. Since this is an agent-based model, rather than a human experiment, the problem of bias with having finite number of rounds does not apply. My results from replicating their first experiment with the square lattice rather support my findings that diversity in synergy with decreasing density of connectivity promotes cooperation in a network. Figure Gracia-Lazaro et al20 analyzed how the players tended towards defection in less than 71 rounds of one game even though many start out initially as cooperators. I arrived at the same finding with my agent-based model. As a matter of fact, my computational model showed that about 95.7% of the games ran had a large majority of players who defected more than cooperate in the total rounds of a game, for the experimental treatment set (with diversity/heterogeneity), but 100% of the 100 games ran had a large majority of players who tended more towards defection than cooperation in the total rounds of a game in the control treatment set (without diversity/heterogeneity). In the equilibrium/ ‘No Preference’ state, the few cooperators in the network  seem to form clusters. However, on the broader scale, our model shows that introducing diversity to the network still led to the emergence of cooperation as the sole evolutionary strategy with a probability of about 55.8%. Diversity here, although promoting cooperation, also seems to enhance defection a bit. This enhancement could be due to the spatial structure of the network. The reasoning behind this speculation is due to the behavior we observe after we introduce diversity to costly punishment. We also find that both defection and cooperation are favored. Many studies have established that spatial structures favor cooperation39. In fact, this is taken to be widely accepted31. The results from this model show that costly punishment disfavors defection when employed alone, but favors both cooperation and defection when diversity is introduced. Bearing in mind that it is deceptive to translate ‘disfavoring defection’ as ‘favoring cooperation’ in the global scale, if spatial structures have an influence on defection, as we can see from this result that they do, then it appears that spatial structures do not necessarily favor cooperation in the global scale, but rather disfavor defection just like costly punishment does. It is also probable that the regular property of the random graph would affect the effect of diversity in the network. Given that Gracia-Lazaro et al20 considered one game of less than 71 rounds, it is not surprising, from the probabilities , that this could give a naive understanding of the interactions in these networks and their eventual outcome when one is considering these influences at the local scale. Biological networks are complex systems, just like human societies, and we can often be misled if we do not consider the global scale of these systems.I believe the contradictory conclusions in both of our findings were not due to incorrect observations, but because of their level of analysis. Gracia-Lazaro This study shows three important findings that would hopefully resolve the controversy in the literature on the impacts of costly punishment and diversity in a biological network and address the question of evolutionary theorists on how to promote large-scale cooperation. Firstly, introducing diversity to costly punishment favors both cooperation and defection, but not vice versa; whereas, introducing costly punishment to diversity disfavors defection but favors cooperation. Secondly, costly punishment, introduced alone, disfavors defection but decreases average payoff; however, decreasing the density of connectivity when there is no costly punishment applied increases the average payoff. Lastly, a synergy of diversity and decreasing density of connectivity favors cooperation in a biological network. This study needs to be extended to actual human experiments to test these observations.et al23. Three agent-based models were designed for this paper. The first was used to analyze interactions without costly punishment . The second was designed for biological networks that implement costly punishment , and the last was designed to replicate the experiment of Gracia-Lazaro et al20 using an agent-based model . The first two are random games while the last is a random k-regular graph. Updates in these models were synchronous, and randomness was applied using Python’s pseudo random generator algorithm. Initially all games start with equal number of cooperators, defectors, and punishers (for networks with costly punishment). Cooperators, defectors, and punishers (for networks with costly punishment) are randomly chosen at every start of a game. The number of connections in the network is determined by the density of connectivity which is a function of f, the multiplying factor.An agent-based model was designed using Python. The algorithm was based on the “imitate-the-best” strategy, where players imitate the strategy of the neighbor with the highest payoff given that the imitated payoff is greater than theirs; the payoff matrix was calculated following Dreber


Life and healthcare demand work from patients, more so from patients living with multimorbidity. Patients must respond by mobilizing available abilities and resources, their so-called capacity. We sought to summarize accounts of challenges that reduce patient capacity to access or use healthcare or to enact self-care while carrying out their lives.We conducted a systematic review and synthesis of the qualitative literature published since 2000 identifying from MEDLINE, EMBASE, Psychinfo, and CINAHL and retrieving selected abstracts for full text assessment for inclusion. After assessing their methodological rigor, we coded their results using a thematic synthesis approach.The 110 reports selected, when synthesized, showed that patient capacity is an accomplishment of interaction with (1) the process of rewriting their biographies and making meaningful lives in the face of chronic condition(s); (2) the mobilization of resources; (3) healthcare and self-care tasks, particularly, the cognitive, emotional, and experiential results of accomplishing these tasks despite competing priorities; (4) their social networks; and (5) their environment, particularly when they encountered kindness or empathy about their condition and a feasible treatment plan.Patient capacity is a complex and dynamic construct that exceeds “resources” alone. Additional work needs to translate this emerging theory into useful practice for which we propose a clinical mnemonic (BREWS) and the ICAN Discussion Aid.The online version of this article (doi:10.1186/s12875-016-0525-9) contains supplementary material, which is available to authorized users. Patient capacity has been defined as the available abilities and resources a patient can mobilize to address the demands healthcare and life make. Limitations in capacity impact a patient’s “ability or readiness to do work” . PatientIn prior research and through clinical experience, we developed a working list of six domains of patient capacity: Personal, Physical, Mental, Social, Financial, and Environmental . Mental When patient capacity is inadequate to shoulder the work of healthcare and life, patients may not be able to access to and use of healthcare and the potential for self-care. This, in turn, can have a negative effect on health outcomes . Still, While strides have been made to characterize the patient’s healthcare workload and how it may manifest as burdensome , and to The aim of this review was to summarize the literature on patient experiences that illustrate patient capacity to access and use healthcare or enact self-care while carrying out their lives. Our practical goal was to inform the development of a discussion aid for the clinical encounter that could create a conversation among patients with one or more chronic conditions, their caregivers, clinicians, and the healthcare team around these issues (the ICAN Discussion Aid) . By critThe conduct of this systematic review followed a rigorous protocol and this report adheres to the ENTREQ statement .To develop our search strategy, we followed methods described by Gallacher et al. for conducting a qualitative systematic review of a novel construct . We firsA comprehensive search of four databases  published from January 2000 to May 2014 was conducted. An experienced librarian (PE) designed the search strategy with input from study investigators (KB and VMM) with expertise in conducting systematic reviews. Controlled vocabulary supplemented with keywords was used to search for studies that described limiters of capacity or barriers that patients with chronic conditions experience in their lives. The search strategy is available in the Additional file We included in-depth interviews, focus groups, or ethnographic studies in which limiters of capacity or barriers that patients with chronic conditions experienced in their lives as part of accessing and using healthcare or enacting self-care were described. We sought studies with qualitative methods because we aimed to synthesize rich descriptions of patient capacity. Chronic conditions were defined as: a condition “that lasts 12 months or more and either limits self-care or independent living or requires ongoing medical intervention” . Access Studies were excluded if their primary unit of analysis was not the patient . We excluded studies that used strictly quantitative methodology to answer their research question. Studies that were mixed methods were included if their results placed sufficient priority on the qualitative patient experience. We made this determination by applying Creswell’s criteria of priority in mixed methods studies: “noting the relative emphasis given to framing the research problem  or the subservient use of 1 form of data to the other .”  Mixed meStudies were screened in two stages: abstract screening and full text screening. In each of these stages, each study was screened independently and in duplicate by the lead author (KB) and one other reviewer . The chance-adjusted inter-reviewer agreement calculated using k statistic was 0.69 at the abstract screening level and 0.74 at full text screening. Disagreements were resolved through discussion and consensus among the two reviewers. When consensus could not be reached between the two reviewers, studies were sent to a third reviewer for the final decision.Descriptive data  of the included studies were extracted using Distiller SR . During data extraction the lead author (KB) and co-author (MG) individually and in duplicate conducted a quality assessment of each study using the Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist . The 9-iAfter data extraction, full-text manuscripts were imported into Nvivo 10 . We conducted a thematic synthesis of the results sections , resultiWhile we sought to incorporate the timeline relative to the time since diagnosis as another concept of patient experiences, there was a paucity of studies that reported this information. Where it was reported, it did not seem to inform the study design or analysis which made it impossible to include in the final analysis.Our initial search strategy yielded 1805 manuscripts. After abstract screening, 405 manuscripts were moved to full-text screening. After full-text screening, we had 110 manuscripts, which were ultimately included in the study for quality appraisal, data extraction, and coding. Figure Table We found that patient capacity was not simply a set of resources that need to be accessed and mobilized. Instead, it is an accomplishment of interaction, where identifiable psychological and social mechanisms make key contributions. As patients interact with their own biography, resources, environment, patient and life work, and social network, their capacity is either limited or furthered. Also, there were contextual factors that made it easier for patients to cope and self-manage. Figure Having chronic disease brought on a host of bothersome symptoms that ultimately disrupted normal life, including employment, housework, and social responsibilities. For some patients, this negatively impacted their quality of life, whereas others were able to reframe and recast their life to account for the new reality.“I don’t dedicate myself to anything because I am a sick person. What am I going to dedicate myself to?”  people to try to get my medicine, and it’s so frustrating.’ He believed that a general practitioner or emergency room physician was not capable of understanding his condition, compared to a specialist such as a neurologist. However, according to the property manager, just because a health care provider is a specialist does not necessarily guarantee that he or she will act in an understanding manner. The property manager described neurologists who did not appear to be truly listening but sat jotting and doodling on their pads. She stated, ‘They treat you [as if] everybody who comes in with a migraine basically is the same; they don’t really listen to you’”  was a diabetic for 12 years. So I have learned to eat unsweetened soup and more vegetables, decrease the fat, no cream sauces and I have continued with that” , at the beginning it was so clear regarding how much you changed your lifestyle. Now it is more like… now you begin to be more used to it, [you] are a little more withdrawn. Your mood is affected also, you are going to do something and you can’t do everything, then it’s not as fun anymore. You go to the pub and not… yeah… can’t follow the guys in the way you would want to. You go visit a friend and you do bring your syringes, are going to have lunch in town, so you eat your lunch and then some other things happens, maybe you can’t accompany [them] because you haven’t had your snack or maybe not [brought] your dinner insulin or whatever, then it’s just to go home”  when they hear my name, “Oh, shit, she’s here. Let’s get her. I’ve been blessed with them doctors”  explained everything, I was very comforted. I felt taken care of and would give them an A’” . It would help with the disease as well” [as well” .“Finally, some patients described a sense of frustration at the inconvenience of medications, especially with how they interfere with daily life or other important routines like travelling. ‘…that interferes most with my lifestyle. Because of the medication I take, I start taking at 6:00 pm and by 7 pm I’m wasted, just exhausted. I mean it is so.’ ‘Travel is a big issue… making sure I have everything when I go and forgetting something when I get somewhere. It is not real easy to get a prescription transferred’”.The fit of the condition, self-care, and healthcare into the patient’s lives helped with the process of realizing healthcare tasks, which meant that patients’ resources were used more effectively, and they were better able to engage in their social settings in a comfortable way. Again this process of successfully realizing work can facilitate cognitive, emotional, and experiential success, to further grown and cultivate the patient’s capacity. Particularly important was health and healthcare that fit the patient’s life did not interfere with competing priorities in life, such as enjoyment time on the weekends where patients were in a different routine. One could imagine treatment plans that were dynamic and were situated in what the patient was engaged in doing at the time.These examples of both kindness and empathy in healthcare as well as the fit of treatment to the patient’s life, in some respects echo the concept of “person-centered care”, which puts forth that care should 1) afford people dignity, compassion, and respect; 2) offer coordinated care, support, or treatment; 3) offer personalized care, support, or treatment; and 4) support people to recognize and develop their own strengths and abilities to enable them to live an independent and fulfilling life .existing resources or networks, the literature also suggested that capacity could be cultivated and grown. They could not only survive, and cope, but they could also author their own stories. This occurred when patients were able to complete necessary healthcare activities without compromising their pursuit of joy. Activities were intertwined in their lives, and impacted one another. Small victories helped develop greater capacity to continue onward, to reframe their lives, tap into their resources, engage their social networks, and fit their treatment into daily routines. This process furthered their ability to access and use healthcare, adapt, and self-manage.“‘I can help others who have been there or who are there. I feel like we’re in a club, so to speak, the ‘Survivor’s Club.’ I can speak to them on a different level than I could Joe on the street because I know what it’s like to be in my position.’ Survivors often found it difficult to reach out to or accept help from others, but doing so brought control to their lives and the opportunity to give something back to others, restoring meaning and value to their lives. Finding activities to keep themselves engaged and active also was important to survivors” [rvivors” .“I can do it (make a cup of tea)…hobble… with the crutches into the kitchen pull a wee chair out, sit down, the kettle’s not full. I’ve gotta sit on the chair, turn it round a wee bit, struggle round, hold onto the sink, fill the kettle up, struggle round again, put it back down again. It’s an effort, but it can be done…” [e done…” .While patient stories of capacity often discussed the mobilization of The processes of reshaping one’s biography in life with chronic condition(s)Resources, their social networks, and the actions required for healthcare and self-care along with and despite of competing prioritiesAn environment of kindness, empathy, and a feasible treatment plan.In the body of literature, we found that patient capacity is an accomplishment of interaction with:How do this patient’s interactions serve to limit or grow their capacity?” Additionally, they must consider treatment plan fit: “Does this treatment plan fit with what this patient values doing and being in the world?” rather than “Is this treatment plan feasible given their resources?”.In critically thinking about the state of the patient’s capacity, clinicians and other health professionals have a unique opportunity to partner with patients. If clinicians and health professionals seek to respect, support, and build patient capacity for self-management, a shift in thinking is required. Rather than thinking only about the treatment action(s) called for by the clinical discussion at hand by asking “Does this patient have the capacity to do this task?,” they may need to instead consider the action at hand in light of the other capacity-shaping processes going on in the patient’s life by asking, “What BREWS patient capacity? This mnemonic may provide an opportunity to pause in the intensification of treatment if they suspect a patient is struggling with Biographical reframing. By understanding current Resources, they can seek to draw on existing resources instead of those not currently in the patient’s repertoire. Understanding the Environment may illuminate, how the treatment plan fits or doesn’t fit in the patient’s life, or whether the patient has been met by other health professionals with kindness and empathy. If patients are struggling with understanding, realizing, and accepting the Work of both patienthood and life, clinicians may refer patients to health or wellness coaches to work with patients to overcome these challenges and create new capacity. Finally, as clinicians understand the patient’s Social interactions with family, friends, and useful others, they may be able to suggest treatment plans that are more socially acceptable to the patient, or connect them with support groups and chronic disease self-management programs. Ultimately, carefully consideration of the patient’s capacity in this way should allow clinicians and other health professionals to work together as a team to design treatment plans that fit their context and support the patient’s capacity to enact this plan.We have simplified our theoretical framework into a potentially useful mnemonic, to remind busy professionals of the components of capacity that are worthy of consideration beyond resources alone: Biography, Resources, Environment, Work , and Social (BREWS): integrated identity [Components of the proposed theory can be found in other theories and models as well. However, the effort to synthesize these constructs in light of the Cumulative Complexity Model (CuCoM) and grounded in a wide array of patient experiences, is novel. For example, the concept of reshaping one’s biography in periods of transition in chronic disease is echoed in the Transitions Theory. Characteristics of a healthy transition process include the patient feeling connected, interacting, being situated, and developing confidence and coping . Ultimatidentity . The conidentity –24. Finaidentity . Yet, nocapacity building in these patient groups.This review is supportive of important elements of both the CuCoM and Burden of Treatment Theory (BoT) Theory . The CuCBecause we only conducted analysis on reported results from each study, we did not have the opportunity to conduct the original interviews and focus groups, or conduct analysis from original transcripts. We may have missed important elements of the patient stories that were connected to quotes that authors selected to report, or that went beyond the author’s interpretation of the experience. Additionally, as highlighted in our quality appraisal, a handful of included studies had incomplete reporting. This also could have impacted the amount of information presented in the included studies available for analysis. However, because we were able to explore such a breadth of published studies, we gained insight from a much larger sample of patients, with a broad range of conditions, compared to that which we would have encountered in a single, originally-conducted, qualitative study. Additionally, our recoding of the data is inherently connected to our construction of the concepts, which is seen through the lens of the Cumulative Complexity Model and deeply influenced by the thinking of Minimally Disruptive Medicine. However, we sought rigor in our analysis through screening and extracting in duplicate, and also coding a subset of studies in duplicate until we were in agreement, before coding individually.There are two areas of needed research that should be considered in light of these findings and the proposed Theory of Patient Capacity. First, future research is needed to explore the constructs that are described within. The qualitative literature suggests that each of these factors play an important role in hindering or furthering the patient’s ability to adapt and self-manage. However, it does little to suggest directionality, order, or magnitude of the associations. Future work should attend to these issues. Additionally, the CuCoM postulates that patient workload-capacity balance affects the extent to which patients are able to access and use healthcare, enact self-care, and their health outcomes. Therefore, associations between constructs described and patients’ success in these areas are worthy of testing. To date, testing the associations between capacity and patient perceived disruption from illness and treatment has to this point focused on the patient’s resources . It would be helpful to understand, for example, what correlation exists between the patient’s biographical reframing  and their disruption from illness and treatment.Second, since this research question emerged during the development process for the ICAN Discussion Aid, there is a unique opportunity not often available in the case of conceptual work: the potential for clinicians and health professionals to immediately explore the constructs described here . Health As uncovered in this qualitative systematic review, patient capacity is a dynamic accomplishment. The following psychological and social mechanisms hinder or bolster capacity: patient biography, their resources, their environment, their ability to accomplish life and patient work successfully, and their social networks (BREWS). Future research should focus on further exploration of how constructs are related, and of how to apply this theory of capacity in the planning and implementation of treatments in the care of patients with multimorbidity.


This paper reviews translational research in psychiatry, focusing on those programs addressing the problem of the validity of psychiatric diagnoses. In medicine in general, and in psychiatry in particular, the term “translational” is used with different meanings. A conceptual analysis suggests that there are at least seven different types of translational research in psychiatry: T1 (“bench-to-bedside” development of tools and treatments), T2 , T3 , T4 , T5 (“bedside-to-bench” translation of population data for laboratories), T6 , and T7 .Concerning the problem of validity of psychiatric diagnoses, new neurocognitive models like the Research Domain Criteria project are considered, in particular the translational program of cross-validation aimed at reducing the gap between neuroimaging data and psychopathological scores derived from rating-scales. It is shown that these programs are useful, filling some of the current research gaps, but it is also stressed that they carry implicit realist and reductionist assumptions. It is finally suggested that the formation of mental symptoms is a complex process involving both neurocognitive and semantic factors, which raises doubts about the possibility of complete translations, without residuals. Once upon a time there was a psychiatric community believing in the “bible” of psychiatry . There were rigorous operational criteria functioning as mechanisms in which the input was the symptoms found by the clinician and the output a diagnostic label. Such diagnoses, called mental disorders, were assumed to be natural entities like many other medical diseases, the only problem being that their aetiopathogenesis was still unknown. However, there was a general trust that with time researchers would have discovered the specific genetic liabilities, neurochemical imbalances and neurocognitive circuits responsible for mental disorders.Many were surprised to realise that the long awaited DSM-5  was publAn epistemological analysis inspired by the work of Kuhn  had beenIn the meantime, research in neuroscience was dramatically progressing thanks to the availability of new neuroimaging and neurophysiological techniques. However, the consequent better knowledge of brain structure and function raised new challenges when applied to psychopathology. On the one hand, there are projects of radical reformulation of psychiatry based on the neurosciences ,7,8, whiThe pressing question raised by these new developments is whether mental symptoms are reducible to neurocognitive function without residual, i.e. how much the capture of brain dysfunction is related to the psychopathological phenomena that are supposed to arise from it? It is in this context that the problem of “filling the gap” between phenomena and brain activity arises anew.Recently, the term “translational” has been imported into psychiatry to refer to research aimed at resolving this problem. However, as we will see, there are several meanings attached to this word, hence some preliminary conceptual clarification is needed.In this paper, I will first review the meanings of “translational research” in medicine. Second, I will perform a PubMed review of translational research in psychiatry to show its already established uses and main tendencies. Finally, I will focus on translational research applied to the problem of validity of mental disorders in relation to neuroscience.According to Woolf , “TranslAs we will see, in psychiatry, “translational research” is used in different ways that only partially overlap with the medical usage, so a different list of “T” types will emerge.A PubMed search  revealed 50 articles containing “translational research” AND “psychiatry” either in the title, keywords or abstract. Of these, 3 did not focus on psychiatry and 1 was a historical paper on asylums. Of the remaining 46 papers, 20 (43.48%) were reviews, 16 (34.78%) were theoretical papers, 4 (8.70%) were abstracts or reports of meetings, workshops or roundtables at congresses, 2 (4.35%) were commentaries and 2 (4.35%) were experimental studies: one studied the interplay between the workflow for clinical tasks and research data collection (15), and the other measured sensitivity and specificity of a vector machine model for the analysis of transcriptomic data in major depressive disorder (16). Finally, there was one editorial and one paper describing a device (the development of a database). As shown in The analysis of the typology of translational research (T types) presented in these papers was performed with a bottom-up procedure, starting from major concepts similar to the T1/T2 distinction used in medicine, and adding or dividing such categories when new stances emerged. It is presented in detail in T1  includes “bench-to-bedside” papers, i.e. basic science developments of tools and treatments that could be used clinically or commercialised.T2  comprises articles arguing for the application of animal models to human psychiatry.T3  contains papers focusing on the mind-brain gap, i.e. focusing on aetiology. pathophysiology and/or validation of mental phenomena/disorders through neurobiological research or the study of neurocognitive dysfunctions.T4  includes articles about personalised therapies and the possibility to predict/track treatment response.T5 is a category with one article proposing a reverted “bedside-to-bench” project aimed at translating knowledge generated at population level to laboratories.T6  is aimed at translating research into practice .T7  comprises papers proposing ways to improve translational knowledge in residents’ trainings and researchers’ careers.In general, in psychiatry translational research appears to be a recent movement that has been rapidly growing in most recent years. However, absolute numbers of publications are still low, in one third of the papers translational research is not the main issue and, above all, the vast majority of articles are not experimental. Moreover, the analysis of T types shows a relevant heterogeneity, with at least seven different kinds of translational research.In the next section, I will explore in more detail the T3 typology, dealing with the impact of translational neuroscience, particularly in validating/revising psychiatric diagnoses.“Translational research” is just one of several terms used to refer to three related questions: a) what are the neurocognitive dysfunctions subtending mental illness? b) what are the research methods to fill the gap between “objective” neuroscientific data and “subjective” mental phenomena? c) what is the importance of these studies in revising psychiatric classification? Among the terms used to refer to these issues, the neurophenomenological movement and the work on endophenotypes would deserve thorough consideration, although for reasons of space they will not be considered here. More recently, the raise of neurocognitive research fuelled programs of neurocognitive reformulation of psychiatric research and classification, the most known being the Research Domain Criteria (RDoC) project . Quite sReturning to the RDoC project, it was designed “to shift researchers away from focusing on the traditional diagnostic categories as an organising principle for selecting study populations towards a focus on dysregulated neurobiological systems” . AlthougThis paper reviewed translational research in psychiatry, focusing on those programs addressing the problem of the validity of psychiatric diagnoses.In general, translational research in psychiatry appeared quite heterogeneous, with at least seven different ways to intend such programs. This polysemy may engender confusion and a first part of this paper was dedicated to a conceptual clarification to reduce misunderstanding.Another problem is that the debate on the potential of neurocognitive research in revisiting psychiatric diagnoses is only discussed in part within the framework of translational research; several other terms and concepts are involved as well.One major issue in contemporary psychiatry is the validity of psychiatric diagnoses, because the crisis of confidence that emerged in recent years in relation to the DSM-5  is not oIn general, psychiatry is at a crossroads. On the one hand, there is the classic psychiatric stance, whose last version was the neo-Kraepelinian project. According to this perspective, psychiatrists had to reliably describe mental disorders, i.e. phenomenally-based clinical descriptions of conditions that were considered putative disease entities. Subsequent research should have gone through validation research to discover the neurobiology subtending such conditions. On the other hand, following the advancements of recent neurocognitive science, new proposals flourished suggesting the need to consider neurocognitive dysfunctions as the key elements to be studied, with psychopathological phenomena  secondarily arising from this more basic level.In other words, while in the neo-Kraepelinian approach validation research is expected to proceed from phenomenally defined disorders back to the discovery of their aetiology, in programs like the RDoC project, the direction is expected to be from “subpersonal” dysfunctions  ahead to the resulting phenomenal picture . Both viAccording to Telles Correia , both apAs a result, one main issue for psychopathological research is the following: researchers working in translational research applied to the validity of psychiatric diagnoses should consider that the relationship between neurophysiological variables and mental symptoms is much less direct and linear than commonly claimed. For example, the Cambridge model of symptom formation suggests that mental symptoms may be conceived as complexes of neurobiological and “semantic”  elements. According to this concept, even when a neurobiological signal is the starting point of the constructive process, the degree of its correspondence to the final mental symptom is variable  and depeBearing in mind this cautionary knowledge does not mean that translational research pointing to better ways to correlate mental and neurocognitive phenomena should be viewed with suspicion. On the contrary, such attempts to better articulate the relationship between the phenomenal and the neurocognitive level should be welcomed, provided that translation should be allowed in both directions and that any good translator has to be aware that “to translate” is also, a little bit but unavoidably, “to betray”.


After decades of proclaimed therapeutic breakthroughs, neither neurobiology nor neuroscience has led to better long‐term outcomes for any of the major mental disorders. This contrasts with the long‐term efficacy of psychosocial interventions and points to the necessity to focus on sustained success, broaden our concept of mental health problems, and resist the temptations of marketing. Urban Hymns, released in 1997. The song was written by lead singer Richard Ashcroft relating to his drug abuse, but it might well relate to the modern treatments for mental illnesses. More than half a century after neuroleptics, antidepressants, benzodiazepines, antipsychotics, behavior therapy, and cognitive treatment were introduced, it is prudent to ask whether “the drugs don't work”.“The drugs don't work” was one of the hit singles from The Verve's album During the past 50 years, the industrialized world has seen a dichotomy between loudly proclaimed therapeutic breakthroughs and rapidly rising numbers of people on disability payments because of mental illness. We hear that antipsychotic, antidepressant, and anti‐anxiety drugs as well as behavior therapy and newer treatments have radically improved what was described as a dismal fate of people suffering from mental disorders. Simultaneously, the percentage of disabled mentally ill patients in the USA has risen by more than 600% since the 1950s  in treating anxiety disorders; for depression, the two modalities appear to be roughly equivalent, and most clinicians would argue that drug treatments are superior to psychotherapy for treating psychotic disorders. Neither drugs nor CBT show convincing efficacy against ADHD.However, mental disorders are fluctuating and chronic conditions. What really counts therefore is lasting improvement. Here, the picture looks radically different: Lasting success after the end of treatment has only been shown for psychotherapy , whereas the effects of drug treatments vanish rapidly once the drugs are withdrawn. This is obvious for anxiety disorders, depression, and ADHD and may also apply to schizophrenia.There are now plenty of data and evidence that, in the long term, the drugs do not work.et al, CBT undoubtedly outperforms drug treatments  for anxiety disorders such as panic and phobias. Since the 1980s, Western governments have also been warning that benzodiazepines are addictive and should not be used on a long‐term basis. Moderate to strong withdrawal syndromes, worsened anxiety, cognitive impairment, and functional decline are consistent consequences of long‐term use, and there is a clear dose–response relationship. Regarding depression, it was initially claimed that 70% of the patients responded to antidepressants and 30% to placebo. Today, these numbers are actually closer to 40 and 30%  as distinct illness categories leads to an uncritical acceptance of supposed qualitative differences between “health” and “illness”, whereas research shows equivocal or even outright contradictory results. Categories with dubious validity miss the relevant dimensions of human behavior to the great detriment of scientists, clinicians, and patients. One prominent alternative approach, the US National Institute's of Mental Health′s Research Domain Criteria, aims to develop a classification based on behavioral dimensions and neurobiological measures. Its units of analysis, however, range only from genes to self‐reports, curiously omitting the social level.Third, although we have broadened our view since George Engel introduced the bio‐psycho‐social model of illness in 1977, we have interpreted this with an increasingly narrow focus on biology and “bottom‐up” causal pathways, largely neglecting “top‐down” causal pathways. This is in stark contrast to the clearly established relationships of mental health problems with psychosocial factors. Recent findings show that the effect of social factors is largely mediated by psychological mechanisms—sense of control, mental activity, delay of gratification, self‐efficacy, and so on. Moreover, there are now reliable findings that improving social factors also improves mental health in a lasting way.After decades of proclaimed therapeutic breakthroughs and promises of imminent better treatments based on translation of basic science into clinical practice, neither neurobiology nor neuroscience has led to measurably better long‐term outcomes for any of the major mental disorders  program, which provides evidence‐based short‐term psychotherapy for anxiety and depression. Indeed, the major problem in psychotherapy, in contrast to drug treatment, is not efficiency but availability for those in need and the quality of treatment. The cost is not a major issue: A standard CBT to treat anxiety disorders, for instance, costs less per year than a drug regimen.A realistic assessment of our current treatment options and the close cooperation of clinicians and neuroscientists would help us to overcome the current stagnation and put us back on the track forward.See AppendixClick here for additional data file.