The aim of this narrative synthesis was to explore the necessary andsufficient conditions required to define moral distress.Moral distress is said to occur when one has made a moral judgement but isunable to act upon it. However, problems with this narrow conception haveled to multiple redefinitions in the empirical and conceptual literature. Asa consequence, much of the research exploring moral distress has lackedconceptual clarity, complicating attempts to study the phenomenon.Systematic literature review and narrative synthesis (November 2015–March2016).® In-Process & Other Non-Indexed Citations1946–Present, PsycINFO® 1967–Present, CINAHL® Plus1937–Present, EMBASE 1974–24 February 2016, British Nursing Index1994–Present, Social Care Online, Social Policy and Practice Database(1890–Present), ERIC (EBSCO) 1966–Present and Education Abstracts.Ovid MEDLINELiterature relating to moral distress was systematically retrieved andsubjected to relevance assessment. Narrative synthesis was the overarchingframework that guided quality assessment, data analysis and synthesis.In all, 152 papers underwent initial data extraction and 34 were chosen forinclusion in the narrative synthesis based on both quality and relevance.Analysis revealed different proposed conditions for the occurrence of moraldistress: moral judgement, psychological and physical effects, moraldilemmas, moral uncertainty, external and internal constraints and threatsto moral integrity.We suggest the combination of (1) the experience of a moral event, (2) theexperience of ‘psychological distress’ and (3) a direct causal relationbetween (1) and (2) together are necessary and sufficient conditions formoral distress. MD has subsequently gained increasing attention in nursing research, themajority of which conducted in North America but now emerging in South America,Europe, the Middle East and Asia. Studies have highlighted the deleterious effectsof MD, with correlations between higher levels of MD, negative perceptions ofethical climate2 and increased levels of compassion fatigue among nurses.4 Consensus is that MD can negatively impact patient care, causing nurses toavoid certain clinical situations and ultimately leave the profession.6 MD is therefore a significant problem within nursing, requiringinvestigation, understanding, clarification and responses. The growing body of MDresearch, however, is arguably failing to bring the required clarification butrather has complicated attempts to study it.7 The increasing number of cited causes and effects of MD means the term hasexpanded to the point that according to Hanna8 and McCarthy and Deady,9 it is becoming an ‘umbrella term’ that lacks conceptual clarity referringunhelpfully to a wide range of phenomena and causes. Without, however, a coherentand consistent conceptual understanding, empirical studies of MD’s prevalence,effects, and possible responses are likely to be confused and contradictory.The concept of moral distress (MD) was introduced to nursing by JametonA useful starting point is a systematic exploration of existing literature tocritically examine definitions and understandings currently available, interrogatingtheir similarities, differences, conceptual strengths and weaknesses. This articlepresents a narrative synthesis that explored proposed necessary and sufficientconditions for MD, and in doing so, this article also identifies areas of conceptualtension and agreement.10 used the example of a house fire to explain the relationship betweennecessary and sufficient conditions, pointing out that there is no single necessaryand sufficient condition for a house fire, but there are some necessary conditionsfor a fire to occur  and there arevarious groups of conditions that are sufficient together but not necessary . Importantly, therecannot be a house fire unless these necessary and sufficient conditions  are met.The language of necessary and sufficient conditions is commonly used in philosophy todefine and explain connections between concepts and causality; offering a helpfulway to conceptually examine MD. Mackie1 definition being framed in terms of the conditions in which MD arises. ForJameton, MD occurred when (1) a moral judgement has been made and (2) there areinstitutional constraints that prevent that moral judgement from being acted on. Onthis account, the presence of ‘constrained moral judgement’ is both a necessary andsufficient condition of MD. It is necessary because MD cannot occur without it, andit is sufficient because nothing else is needed for MD to occur. Literature on MDsince then has eitherAccepted this account of MD, as based on a single necessary andsufficient condition and defined in terms of that condition.Challenged the necessity and/or sufficiency of that single condition.Suggested adding other necessary or sufficient conditions.Added to the necessary and sufficient conditions a range of specificcauses of those conditions.To use a different illustration, there are certain conditions, such as frailty,immobility or poor nutrition, associated with the increased likelihood of developinga pressure ulcer. None of these, however, are necessary or sufficient conditions fora pressure ulcer; they are only factors that increase the likelihood of an ulcerforming when the necessary and sufficient conditions are met. There is one conditionthat is both necessary and sufficient for a pressure ulcer, and that is the presenceof continued pressure on the skin. It is necessary because a pressure ulcer cannotoccur without it, and it is sufficient because that is the only thing needed to forma pressure ulcer. One of the main challenges of defining MD is that, as we shallsee, MD tends to be conceptualized in terms of the conditions in which it arises,for example, ‘MD occurs when conditions X and Y are met’. This is the starting pointof our inquiry, with Jameton’sDefinitions of MD are, therefore, a relatively confused and complex bundle ofnecessary and sufficient conditions, causes and effects, which the review reportedin this article aims to unpick.The narrative synthesis aimed to identify key proposed definitions of MD and explorewhat components of those definitions, if any, ought to be considered necessaryand/or sufficient conditions for MD.11 Strech et al.12 suggest a seven-step systematic review process that is sensitive to thechallenges of examining bioethical concepts such as MD. Combined with ‘narrativesynthesis’, it provided the flexibility to systematically search the literature andsynthesize key findings from a range of studies with different aims and usingdifferent methodologies. We used guidelines from Popay et al.13 to direct critical appraisal, data extraction and explore relationshipsbetween studies.1. Defining the review questionThere are numerous kinds of systematic review, and our approach allows us to capturethe rich and sometimes controversial conceptual development of MD in a way that isnot overly reductive.The review question asked, simply, ‘how is MD defined or conceptualized?’ The searchwas not limited to one specific discipline because MD is not limited to healthcareor nursing. 2. Selection of the relevant databases® In-Process & OtherNon-Indexed Citations 1946–Present; PsycINFO® 1967–Present;CINAHL® Plus 1937–Present; EMBASE 1974–24 February 2016; BritishNursing Index 1994–Present; Social Care Online and Social Policy and PracticeDatabase (1890–Present); ERIC (EBSCO) 1966–Present; Education Abstracts, crossreferenced with EthxWeb (1974–2009) and EUROETHICS.Databases were searched according to the specific area under exploration. Thefollowing databases were searched: Ovid MEDLINE3. Ancillary search strategiesIn addition to electronic searching on relevant databases, hand-searching referenceof included studies was conducted to identify any overlooked papers.4. Development of search algorithmSearch terms and selection of relevant databases were guided by the discipline inwhich MD was being explored . Thisprocess is detailed in the PRISMA diagram in 5. Relevance assessment of the retrieved referencesRelevance assessment was carried out at two stages . First, 6. Data extraction and quality appraisal14 note that quality appraisal in integrative reviews necessarily variesdepending on the diversity of the included data, and as this review incorporatedquantitative, qualitative and theoretical papers, this process was complex. Qualityassessment was conducted using a critical appraisal and data extraction guide that was adapted for use with both empirical and theoretical papers toinform thinking about the robustness of each paper. For example, quantitative paperswere assessed for validity and rigour; qualitative papers were assessed forcredibility and trustworthiness and theoretical or argument-based literature wasassessed upon the strength, plausibility and transparency of arguments.15Quality assessment was undertaken on all papers that passed the first relevanceassessment. Whittemore and Knafln = 34),papers were retained.Methodological quality influenced the second relevance assessment so that empiricalpapers deemed to be of poor quality were excluded .Conversely, papers judged to be methodologically strong but not providing conceptualinsight were excluded (because they failed to meet inclusion criteria on thatbasis). After quality appraisal and relevance assessment . Papers of sufficientmethodological rigour and that provide conceptual insight (n= 34) are discussed and synthesized in the narrativebelow.Exploring relationships within and between studies: Manyof the studies explored causation or prevalence and because the aim wasto gain a greater understanding of the phenomenon itself, charting ofthis specific data was deemed unnecessary. Conceptual relationshipsbetween studies were explored and tabulated.Assessing the robustness of the synthesis: Assessingpapers for conceptual development from diverse methodologies requiresgreater interpretation regarding relevance and consequently this stepcan be most susceptible to bias.12 In order to enhance trustworthiness, we have reported thisprocess in a transparent manner.Following Popay et al.,13We did not follow these seven steps in a linear fashion but used an iterativeprocess, moving between each stage in the direction that made sense of the data.From the 34 included papers, 20 key definitions were identified . Rather 1 definition stipulates moral judgement and constraint as necessary andsufficient conditions for MD and differentiates MD from ‘moral dilemmas’ and ‘moraluncertainty’. According to Jameton,16 the nurses he encountered were describing as ‘dilemmas’ instances where theyhad made a moral judgement but were unable to act upon it, and this is what causedtheir MD. Similarly, Peter et al.27 found that although uncertainty pervaded nurses’ narratives of aggressivecare, they only experienced what they called MD, in situations where they ‘knew’ theright thing but were constrained. The subsequent narrative surrounding MD focused onthe complexities of negotiating their moral judgements in the presence of constraints.27 To make sense of this definition, we must be clear about what it is to havemade a moral judgement and to be constrained. There is little ambiguity about how tounderstand ‘constraint’ – it is a barrier to acting as one would want. There is,however, ambiguity about what a ‘moral judgement’ is. Terminology in the literatureranges from a ‘moral judgement’, ‘moral decision’, ‘moral belief’ or an ‘awareness’. Fourie’s criticism is that while moral judgement might be a sufficientcondition for MD (when combined with constraint), it ought not be thought necessarybecause MD can be experienced in the absence of a moral judgement, for example, whenone is faced with a moral dilemma and feels uncertain about what judgement should bemade.Fourie1 definition can also be viewed as too narrow due to the exclusive focus oncausal conditions. On his account, there is no necessary affective component to MD,and MD could occur without anyone actually feeling distressed, as all that is neededis a moral judgement that cannot be acted upon. We might reasonably assume that thefeeling of distress is implicit on Jameton’s definition, but Wilkinson5 was the first to explicitly incorporate the psychological effects of MD intoa definition. After carrying out interviews with 24 nurses, Wilkinson5 described seven ‘indicators’ that were perceived to contribute to, or wereinfluenced by, MD. Wilkinson5 concluded that MD produced feelings of anger, frustration and guilt, whichwere produced in response to one’s moral decision being thwarted. Wilkinson28 argued that Jameton’s definition failed to refer to the effects of MD and only indicated the cause (judgement + constraint)and so incorporated both cause and effect into her definition of MD  canbe a sufficient condition of MD.Fourie19 found that distress occurred during moral dilemmas and uncertainty, whenhealthcare professionals (HCPs) were uncertain about the right course of action, andcalled this MD. This resulted in a definition  fell outside Jameton’s1 definition and argued this should motivate a broader understanding of MD thatcould accommodate all of these causes as sufficient , where differentobligations conflict and the correct course of action is uncertain. Psychologicaldistress follows from the inability to decide, receding once a decision is made.These responses to Jameton22 still appears to imply that there is a correct course of action and once ithas been identified, the decision-maker will no longer feel distressed. Againstthis, Weinberg30 argues that MD can occur when there is no ‘correct’ course of actionidentified. It seems just as plausible that MD could follow from an unsatisfactorydecision as from uncertainty and inaction.Jameton1 definition framed MD as a purely occupational issue, arising because ofinstitutional barriers or constraints.31 This resulted in decades of research that assumed constraint to be anecessary condition of MD, exploring the nature and kind of constraints that causedMD, and using the presence of constraint, and responses to it, as a way of measuringMD and its prevalence.Jameton’s17 developed the first Moral Distress Scale (MDS), underpinned by definition4 . These scales havebeen frequently modified by individual researchers from different countries whohave, arguably, equivocated conceptions of MD while using an instrumentconstructed using a specific conception of MD, giving us reason to doubt theinternal consistency of their studies. For example, Browning33 used and modified the MDS, a measure of constraint, and yet stated thatMD occurred during moral dilemmas, defining MD as ‘discomfort or internalconflict related to ethical dilemmas encountered in nursing practice whenconstraints prevented the nurse from following the course of action believed tobe right’. Hamric7 highlights how ‘valid measures require a tight linkage between theconcept and the items developed for the measure. It is clear that, at present,multiple measures exist which measure different concepts’. This not only raisesquestions about internal consistency but it also creates difficulties whenconducting meta-analysis; even when studies purportedly use the same measure,they seem to be discussing different concepts and so cannot be readilycompared.Corleynition4 , and arnition4 . The MDS21 led the way with quantitative exploration using a revised MDS and anEthical Environment Questionnaire (EEQ).34 Subsequently, others have found positive perceptions of ethical climateto be associated with lower MD scores.36 Evidencing links between MD and institutional ethical climate is usefulfor developing ways to reduce MD. Musto and Rodney37 argue, however, that they are overly simplistic, mapping correlationsonly, and do not illuminate the complex interplay between an individual’s moralagency, the institution’s interests and resulting MD.Further examination of constraint on action led to researchers exploring therelationship between constraint on actions and the ethical climate ofinstitutions. Again, Corley et al.20 suggest reframing MD in terms of having moral agency that one is unableto act on, thereby being unable to fulfil one’s perceived moral responsibilities, restricting their ability to act as autonomous moralagents and so preventing them from acting in accordance with their core valuesand professional responsibilities. For these authors, the violation of one’smoral agency, rather than constraint on action, is the necessary and sufficientcondition for MD. Constraint on action may cause this violation, but it is notthe only possible cause. If this is the case, then qualitative rather thanquantitative methods may be more suitable to gather the rich data required toexplore violations of moral identity and moral agency.Possibly, with this kind of critique in mind, Peter and Liaschenko39 suggest that MD can also be caused by internal constraints on one’s moralactions. Internal or personal constraints are regarded as self-doubt, lack ofassertiveness, socialization to follow orders, perceived powerlessness and lackof understanding. Internal constraints have received very little attentionwithin the quantitative literature, with limited qualitative exploration. It islikely that this lack of exploration is due to MD being predominantlyconceptualized as arising from external constraint on action. Barlem and Ramos24 theorize that it is the power play in various ‘micro-spaces’ which cancreate internal constraints which impede one’s ability to deliberate about moralissues.Epstein and Hamric40 is epistemic injustice. They argue that MD occurs because often nursesaren’t informed of treatment decisions and their views often not incorporatedinto decision-making or interdisciplinary discussions, creating ‘epistemicinequality’ in the workplace. Insofar as nurses (1) have to convey and enactdecisions made by others, (2) are in a position of epistemic uncertainty and (3)have not been a part of the process, they are acting as mouthpieces for othersrather than as autonomous moral agents. Reed and Rishel argue that this is anepistemic injustice, ‘a wrong done to someone specifically in their capacity asa knower’. This is based upon the work of Fricker,41 who argues there are two kinds of epistemic injustice: testimonial andhermeneutical.One suggested form of constraint on the moral agency of nurses identified by Reedand Rishel40 Hermeneutical injustice occurs when a nurse’s professional opinion isundermined and ignored. Reed and Rishel40 argue this is an example of discrimination against one’s social identity;nurses are below doctors in the medical hierarchy. They argue that ‘this hindersdevelopment of intellectual courage, selfhood, and well-being, as well asimpoverishes disciplinary knowledge overall’.40 Arguably, on this account, the MD an agent experiences as a result ofeither kind of epistemic injustice flows from the agent being wronged by afailure to respect her as a moral agent. This conception of MD is also supportedby Peter el al.27 who provide quotes from nurses who have experienced both forms ofepistemic injustice. It is not clear, however, to what extent epistemicinjustice could be considered a necessary condition of MD or whether it issimply another example of a way in which one’s moral agency can beconstrained.In testimonial injustice, the speaker is discredited because of the listener’sprejudice. This can occur in nurse–physician interactions in the context ofend-of-life decisions, where nurses’ are undermined in their capacity asknowers, experience epistemic injustice and, consequently, MD.42 released a position statement claiming that the inability to act uponpersonal and professional values undermines integrity and authenticity, and this iscore to the experience of MD 43 and Wocial also suggested that integrity is central to MD  and necessary effect . Arguably, however,the use of moral integrity does not bring any clarification, as it is itself anambiguous concept, that may include all the sufficient causes hereto discussed.Although integrity has not received the same attention as constraint, it has not beenentirely ignored. Recently, Hamric44 used Beauchamp and Childress45 definition of moral integrity, characterizing it as ‘soundness, reliability,wholeness, and integration of moral character’, and ‘objectivity, impartiality, andfidelity in adherence to moral norms’. Hardingham,46 for whom moral integrity is a necessary condition of MD, adopted aninterpretation from the political philosopher Larry May, where moral integrityrefers to ‘a wholeness in the relationship between our actions and our values andbeliefs…about a certain conception of our self as being a consistent whole’. LikeMD, moral integrity can be understood in a variety of ways and is contested. Assuch, introducing the concept of moral integrity in order to bring about conceptualclarification of MD does not work – it merely defers the problem.Thomas and McCullough16 definition which considered both moral judgement and constraint necessary andsufficient conditions of MD. One of the main difficulties with Jameton’s originalaccount was the condition of ‘moral judgement’ being ambiguous, leading to differentunderstandings of MD. Across a range of accounts that purported to be consistentwith Jameton, ‘moral judgement’ seems to be used inconsistently, referring (indifferent accounts) to apparently different cognitive states of varying epistemicstrength. For example, to have a belief ‘that x’ seems to be saying something quitedifferent, and stronger, to having an ‘awareness of x’; and yet, all these cognitivestates, collectively referred to as ‘moral judgement’, are seen as equivocal to thebasic state of an agent having made a decision regarding the right thing to do. Thismight be argued to be simply an inconsequential difference of expression rather thanmeaning, but it is problematic because consistent and unambiguous language is vitalwhen trying to understand a complex concept. Furthermore, in the context of moralphilosophy, the difference between labelling something as a belief, a judgement oran awareness can be significant and would alter the conditions for MD. On a morepractical level, questionnaires designed to measure MD are reliant on participantsand researchers having the same understanding of ‘moral judgement’ for theireffectiveness. Risk of conceptual conflation and equivocation is high.The review has highlighted, and unpicked, the many different conceptual foundationsof MD in the literature. ‘Narrow’ conceptions of MD sprung from Jameton’s25 also highlighted that Jameton’s16 interchangeable use of the terms ‘moral dilemma’ and ‘moral conflict’ impliedthat he adopted a commonsense notion of moral dilemmas, aligning dilemma with moralconflict. Accepting this interpretation leads to a conception of MD that excludesexperiences associated with internal conflict, dilemma or uncertainty, and thisseems to conflict with empirical accounts of MD. One response may be that people whogive these accounts are mistaken about what MD is because they have not met thenecessary and sufficient conditions of judgement and constraint. Alternatively, wecould accept those accounts and expand Jameton’s narrow definition to accommodatethem. This requires us to explain MD in terms of a distress response to a range ofpossible causes, including moral conflict and uncertainty.Fourie18The idea of constraint as a sufficient condition for MD has been consistently usedand the notion that it is a necessary condition has been perpetuated, in part,through the use of quantitative measures of MD, such as the MDS and MDS-R. Thesepresuppose constraint as the cause of MD and therefore only measure MD as aphenomenon arising from constraint. The use of a scale both ‘pre-codes’ andinterprets given situations as causing MD and therefore primes the participant toaccept this account of MD as a ‘reality’.5 However, Fourie25 has argued that stipulating both specific cause (constraint) and effect simply creates a ‘compound’ definition that is also toonarrow and overlooks other causal conditions of MD, such as moral conflicts,dilemmas or uncertainty. This criticism, however, appears to be about the exclusivenature of Jameton’s account (limited as it is to just one cause), rather than itscompound nature, and could be dealt with by extending the range of causes, which iswhat most subsequent accounts of MD have tried to do.These problems with narrow conceptions of MD led to broader definitions, whichinitially included the psychological  effects.The psychological distress component of MD, however, seems to have become a necessarycondition of MD. Indeed, if we appeal to a commonsense understanding of the term‘moral distress’, it seems obvious that any distress causally associated with a‘moral event’, such as a moral dilemma or moral uncertainty is, ipso facto, MD.Although commonsensical, it does not necessarily clarify anything, and the problemremains of defining what a ‘moral event’ is and of determining what the causalassociation between the ‘moral event’ and the distress looks like.Arguably, psychological distress is a necessary condition of MD but not a sufficientone. A person may experience psychological distress linked to life events but to beproperly labelled MD, it seems necessary that the distress is directly causallyrelated to a ‘moral event’. This would make the combination of (1) the experience ofa moral event, (2) the experience of ‘psychological distress’ and (3) a directcausal relation between (1) and (2) necessary and sufficient conditions for MD.Research suggests that MD negatively affects nurses. In order to support nursesthrough their experiences of MD, we need to understand both the phenomenon and thecontext in which it occurs. We have shown that there is still little agreement aboutthe conditions that cause MD and therefore there is doubt about what MD is and whenand how it occurs. By analysing the key definitions of MD and suggesting whichconditions could be regarded as necessary and/or sufficient, we have, however,contributed to definitional and conceptual clarity that is required for us toincrease our understanding of MD and shape our responses to it.Click here for additional data file.Supplemental Material, NEJ_Supplementary_Material_(Table_4) for What is ‘moraldistress’? A narrative synthesis of the literature by Georgina Morley, JonathanIves, Caroline Bradbury-Jones and Fiona Irvine in Nursing Ethics


Trust is praised by many social scientists as the foundation of functioning social systems owing to its assumed connection to cooperative behavior. The existence of such a link is still subject to debate. In the present study, we first highlight important conceptual issues within this debate. Second, we examine previous evidence, highlighting several issues. Third, we present findings from an original experiment, in which we tried to identify a “real” situation that allowed us to measure both trust and cooperation. People’s expectations and behavior when they decide to share (or not) their data represents such a situation, and we make use of corresponding data. We found that there is no relationship between trust and cooperation. This non-relationship may be rationalized in different ways which, in turn, provides important lessons for the study of the trust—behavior nexus beyond the particular situation we study empirically. Is trust related to cooperative behavior? Social scientists have classically studied trust, conceptualized as a mental state and measured as such, because they assume that high levels of trust reflect a social reality in which people are more trustworthy and tend to cooperate more frequently [equently , 2. The equently , 4. Onlyequently , 6. Howeequently . Our stuFirst, we review past contributions to this debate as well as evidence that links trust to cooperation , 8. MostSecond, we critically review this evidence and contrast it with an ideal experiment, i.e., a design one would choose to study the relationship between trust and cooperative behavior if there weren’t any practical or ethical constraints. This approach emphasizes various aspects that were either not highlighted at all or at least underemphasized in previous research. Importantly, it produces some new arguments on why previous evidence regarding this question is so mixed and suggests that the ideal—even if not attainable—may still provide a useful benchmark.Third, after providing an overview of the limitations that characterize current evidence connecting trust and cooperative behavior, we present findings from a survey in Germany. For our study we identified a “real situation” that would allow us to observe both trust and cooperative behavior. A corresponding situation is when people share, i.e., entrust their data to others. In studying this situation we also contribute to a growing body of literature that investigates attitudes towards data sharing and data sharing behavior in modern digital societies –14.Section 2 provides conceptual clarifications that are helpful in the discussion of trust and cooperation and presents an ideal setting of how our question would be studied without constraints. Section 3 summarizes and evaluates evidence on our research question that has been collected so far. Section 4 presents our methodological approach. Section 5 presents the results, which are summarized and discussed in the conclusion in Section 6.truster A’s (probabilistic) expectation that a trustee B will display behavior X in situation/context Y [generalized trust aka social trust aka cross-situational trust [trust describes expectations that are tailored to situations. To clarify that trust and generalized trust are two different concepts, scholars often attach the qualification situational or specific to the former [There is relatively wide interdisciplinary agreement that trust describes a psychological state . More spontext Y , 16–18. al trust —a generae former .Cooperation, in turn, describes situations in which an individual willingly acts in a manner that contributes to the others’ welfare , 20. In Trust and cooperation have been studied across a diverse set of situations. In some situations, the trustee category may comprise specific persons ; in other situations, it may comprise more abstract categories . For instance, Uslaner (1999) describes situations that involve trusting strangers, e.g., a fruit seller who does not attend to his stall in person but rather trusts strangers to pay by putting the correct amount into a locked mailbox . While tthere is a positive relationship between trust and cooperative behavior. We review empirical evidence regarding this hypothesis in Section 3. It is mixed and we provide arguments for why this is the case.Generally, it is assumed that a truster A’s cooperative behavior in such a setting is determined by A’s expectation of B’s cooperation. In other words, it is hypothesized that Borrowing from the idea of ideal experiments , we may hypothetical situations. Here, we describe situations to individuals, query them what their expectation would be in those situations and ask them whether they would cooperate or not. It is possible to do so in a standardized way across many individuals. While we can learn a lot from such an approach [hypothetical situations, whose relation with reality is not entirely clear [This ideal scenario is unattainable, which leaves us with two strategies. A first strategy is to study approach , 29, we ly clear . In othereal situations in which we can measure both individuals’ trust and their cooperative behavior. Since we are unable to attach ourselves to individuals and follow them through their life, we have to identify specific situations where we are able to observe them or create such situations ourselves. A survey or a lab experiment in which we query individuals’ expectations and subsequently observe a real decision—as opposed to a hypothetical decision—belongs to this latter category. Naturally by choosing this latter approach, we can still debate on how behavior in that particular situation generalizes to behavior in other situations.A second strategy is to try to find The relationship between trust and cooperation has been examined across a series of studies. The setting most commonly chosen is the lab experiment that allows researchers to survey participants’ expectations and observe their behavior in a controlled environment. Interpreting corresponding evidence is challenging insofar as measures and experimental protocols vary. At the same time, slight variations thereof may strongly influence the results. Below, we review a set of influential studies in this debate and discuss some critical aspects.Glaeser et al. (2000) was one of the first studies to investigate the trust—behavior link, triggering a series of other studies, among other things, because of its controversial result . The autFehr et al. 2002 integrate measures of both trust and cooperation in a survey among 442 Germans . The autGächter et al. (2004) investigate a sample of 630 participants from rural and urban Russia, students and non-students . They meBellemare and Kröger (2007) measure trusting behavior within a Dutch sample of 499 participants . Trust iErmisch et al. (2009) develop and provide rationales for a modified version of the classic trust game by Berg et al. , 31. Amoclassic trust game to measure cooperation which is preceded by two lotteries and an asset market game [Sapienza et al. (2013) rely on data from students of the University of Chicago (N = 502) who played a modified version of the ket game . Trust iket game . Moreoveket game . In otheket game .Peysakhovich et a. 2014 study the so-called cooperative phenotype, i.e., whether one can observe a domain-general tendency towards prosociality reflected in decisions in cooperation games . The autWhile there are several other important studies in this area –41, the generalized trust and trust and the underlying measures used in research. Generalized trust may affect behavior; individuals with a high level of generalized trust are more likely to cooperate across a wide variety of situations. However, we would argue that this causal link exists—if at all—because generalized expectations tend to affect more specific situational expectations. In other words, generalized trust affects trust. However, the link between  trust and cooperative behavior should be much stronger, as it is the situational expectation that takes a situation’s parameters into account, e.g., whether the trustee is a family member or not [Second, evidence on the trust—behavior link is inconclusive. Since there is a strong variation in experimental protocols, measures of trust and cooperation, samples etc., it is hard to discern why this is the case. However, one strong pattern emerges: While findings differ for measures of generalized trust , findings are much more consistent for trust, i.e., participants’ situational expectations. We actually contend that one explanation for this mixed evidence lies in the difference between r or not , 29. HenThird, time matters. It should be a truster’s expectation right before she acts that determines cooperative behavior in a situation (cf. Section 2). However, in the reviewed studies, the measurement of trust sometimes occurs after the measurement of cooperation; sometimes trust is measured long before observing behavior. The decision to measure trust after behavior is defended by suggesting that eliciting beliefs affects the behavior in the experiment . Howevertrust as a specific situational expectation that can (and should) be measured in the actual situation in which we observe cooperative behavior or not. Previous evidence suggests that, once we follow this advice, we are likely to uncover that trust really does matter when it comes to cooperation [there is a positive relationship between trust and cooperative behavior. At the same time, this connection has solely been shown with cooperative behavior in abstract experimental settings, the standard methodology in previous treatments of the subject. Importantly, a focus on and measuring trust as specific situational expectations also allows us to avoid vague questions such as the most-people question that may invite respondents to think of different situations [To sum up, we assume that it is peration , 37. Thituations , 45.Below, we suggest that people’s expectations and behavior when they decide to share (or not) their data represents a situation in which we can fruitfully investigate the relationship between trust and cooperative behavior. First, this situation allows us to measure trust/cooperation for a different situation than is practice in empirical research. Second, in this situation we can measure trust right before measuring cooperation. Third, it allows us to use trust measures that are specific, e.g., specifically refer to a trustee and a behavior that is expected of the trustee. Fourth, instead of collecting individuals’ trust self-reports for a large battery of different trust measures that may influence each other, we can use a single trust survey question before observing behavior. Finally, rather than focusing on students solely we can observe other social strata in this situation as well.https://www.respondi.com/). On the first page of the questionnaire, participants were informed that participation in the survey is voluntary and that the survey results would only be presented in an anonymized manner. Participants were free to skip any question of the questionnaire and break-off the survey at any point. 6088 email invitations were sent to panel members by the online panel provider. 3115 people started the survey. Quotas for gender, age, and smartphone ownership were used based on the known distribution of these characteristics in Germany; 877 panel members who started the survey were screened out because of the quotas, and 8 were screened out because they reported being under the age of 18 or not living in Germany. Out of the 2230 remaining respondents, 121 broke off the survey (5.4%). 7 respondents had duplicated IDs and their records (14) were dropped from the data set. The remaining 2095 respondents completed the online questionnaire. In our survey we measured both participants’ expectations and participants’ cooperation in terms of data sharing. We, the university researchers, were the trustee in this situation. The structure of the survey we developed is depicted in In April 2018, we conducted a web survey among members of the German non-probability online panel Mingle, operated by Respondi AG :After our trust measures, respondents received the following question to gauge cooperative behavior . Section 5 provides further statistics and graphs on the explanatory and outcome variables.While we did not formulate explicit hypotheses, our data allows us to compare normal trust questions with probability trust questions. Conceptually, the latter are more aligned with certain trust conceptions. For instance,  suggestsWe find that the distributions are almost equal in terms of mean and variance  . Table 1trust = 0 to trust = 10 results in an increase of the probability of data sharing by 0.03 (0.0028 × 11) taking the coefficient of Model 1, and of 0.15 (0.0139 × 11) taking the coefficient of Model 2. In our view, these differences are small given that we compared the most extreme categories. Additional models in which we add the three covariates female, age, and education lead to similar results. Standard errors and hypothesis tests are normally invalid, since LPMs’ errors violate assumptions of normality and homoskedasticity [The coefficients in asticity . For thiAs on other scales, responses tend to cluster around the midpoint of trust scales , 51. It Above we concluded that there is no relationship between trust and cooperative behavior in our sample. However, it is possible that certain subsets of our respondents display a stronger connection between their trust levels and subsequent cooperative behavior. For instance, education has long been known to affect response behavior, e.g., seems to affect to what extent respondents differentiate between response alternatives, give don’t know answers, and erroneous answers in general . SimilarIn addition to trust we collected data on a variety of other variables such as gender, age, education, usage of devices, number of social media accounts, and general privacy concern . The coefficient size is similar in models M2 and M3. General privacy concern, thus, proves to be an important predictor of data sharing. Importantly, however, we asked for privacy concern only at the end of our survey. In other words, the relationship could be inflated because respondents want to be consistent with their decision beforehand. A problem that is shared by studies that measure trust after observing cooperation in lab experiments (see above for examples).A move from Is trust related to cooperation? This question is highly relevant insofar as the importance and relevance of studying trust is often motivated through its assumed connection to cooperative behavior [We started with the question behavior , 6, 53. behavior . FollowiWe found that there is no relationship between trust and cooperation as measured in our study. A finding that is robust to the use of two different survey measures namely a normal trust question and a probability trust question. While scholars have long concluded that attitudinal measures are often only weakly correlated with behavior , this is1 and cooperation t2, the stronger the link between the two probably is. We designed our study to minimize this time gap. However, it is still possible that a respondent’s trust does not play a role a few moments later when she considers cooperating. Future studies should elaborate on the meaning of time and potentially try to further decrease the time span between measuring the two concepts. Any such discussion should take into account that measurement usually represents an intervention into a participant’s mind.In our view, this non-relationship may be rationalized in different ways. These ways, in turn, provide important lessons for the study of the trust—behavior nexus and open venues for future research. First, while our study mirrors the ideal setting we describe in Section 3 more closely than previous studies, there are also important differences that may explain the absence of a relationship. In the ideal setting, we would measure the expectation directly before observing a person’s (non-)cooperative behavior. In other words, the closer the measurement time points of trust tSecond, in contrast to several previous studies, we tried to minimize the difference between the trustee in the trust measure (“university researchers”) and in the cooperation measure (“researchers of the university X”). Previous evidence mostly linked trust in “most people”, to cooperative behavior with a “stranger” in the lab. Naturally, our setup deviates from the standard lab games that are about stranger-to-stranger interactions between two people. While we think that our study is sound in that regard, future studies could explore the effect of varying trustees on trust and cooperation. Researchers represent a particular group of trustees. Fig B in Third, trust is one potential determinant of cooperative behavior—given that the behavior is based on a conscious thought process. In principle, the fact that we do not find a relationship could indicate either that trust, measured as the expectation that one’s data is shared with third parties, does not play a role for the decision to cooperate in our study, i.e., to share more data, or that there are other considerations that trump any previously held expectations. The fact that individuals who are concerned about their data  make no effort to protect their data actively or even give it away voluntarily is also known as the “privacy paradox” . Future Fourth, it is possible that the absence of a link between trust and behavior is related to our sample. We argued that trust is necessary both to start a cooperative relationship and to sustain it. While there is considerable variation in our trust measure, the fact that individuals participate in our survey at all could be regarded as cooperation. It is likely that only individuals with a certain level of trust participate in surveys, experiments, etc. This selection occurs because trust itself may affect participation but also because there are other correlates that are linked to both trust and participation. Potentially, trust plays a more important role in starting a cooperative relationship than in sustaining it. We can make similar arguments for subsets of our sample. In principle, it is possible that subgroups exist in which there is a stronger trust—behavior link. In our view, those arguments require more scrutiny in future research.Finally, as we move from the study of generalized trust to the study of situational trust and its relationship to behavior, we would ideally also reassess how these situational expectations are affected by previous positive or negative experiences. A string of studies investigates the impact of experiences on generalized trust –65. HoweS1 AppendixFig A, Distribution of generalized trust. Fig B, Distribution of trust across different trustees. Fig C, Randomization. Table A, Summary statistics: Numeric variables. Table B, Summary statistics: Categorical variables. Table C, Trust and trusting behavior. Table D, Confidence intervals. Table E, Trust and trusting behavior: Spearman correlations. Table F, Subsample—Age 30to50. Table G, Subsample—Age 50andhigher. Table H, Subsample—Age Below30. Table I, Subsample—Female No. Table J, Subsample—Female Yes. Table K, Subsample—University Degree No. Table L, Subsample—University Degree Yes. Table M, Wording of survey questions.(PDF)Click here for additional data file.


Empirical evidence has shown that cardiac rehabilitation programs are effective in reducing morbidity and mortality, improving quality of life in patients with cardiovascular disease. Despite the benefits, women have a high cardiac rehabilitation dropout rate. Our aim was to explore women’s perceptions about the reasons they faced for dropout from these programs.n = 10) after dropping out from three different cardiac rehabilitation centers in Spain. In addition, a focus group and a semi-structured interview with cardiovascular professionals were conducted. From a grounded theory perspective, thematic analysis was used to derive themes from interview transcripts.Semi-structured interviews were conducted with women ; interpersonal reasons ; logistical reasons ; cardiac rehabilitation program characteristics ; and health system reasons . The cardiovascular professionals found barriers to cardiac rehabilitation completion similar to those found by the women.In order to prevent cardiac rehabilitation dropout in women, modular and flexible programs are needed. In addition, the inclusion of primary care centers or community resources could improve cardiac rehabilitation completion in women. Psychological assessment and counseling during cardiac rehabilitation should be included as an essential part of the programs and recommended for those women with depressive symptoms. Finally, improved financial assistance for transport from the health system is essential. Cardiovascular disease (CVD) is the leading cause of death in women 51%) [% [1]. MoTwo reviews found that CR completion was associated with individual and contextual factors such as the perceptions of CR programs, being male, younger than 65 and having transport ,16. SpecThe study was approved by the Andalusian Biomedical Research Ethics Portal. All the participants were informed that they could withdraw from the study at any time without providing a reason. All the participants were informed about the purpose of the study, and provided oral and written informed consent. All data collected were treated confidentially and anonymized. The reporting of data in this study follows the consolidated criteria for reporting qualitative research (COREQ) checklist .This study was carried out from a grounded theory perspective. Due to the lack of studies to date evaluating reasons for CR dropout in women, we ascertained first-person opinions of women who have had this experience.The first author (DMR), female, aged 29 with previous experience in clinical psychology, conducted semi-structured interviews. The second author (EM), white female, aged 41, was the group facilitator in the focus group, with previous research experience in conducting focus groups; and was observed by the first author.For semi-structured interviews, we employed an intentional and theoretical sampling to recruit the participants. Following maximum variation sampling, the inclusion criteria for the study were: (1) women with a principal diagnosis of CVD; (2) having a referral to a CR program; (3) being able to speak and understand Spanish; (4) no cognitive impairment; and (5) CR dropout at any point in the program. Gifts as compensation were offered to the participants at the end of the interview. Nurses working in three CR centers in Andalusia (Spain) conducted the recruitment of participants: Nuestra Señora Virgen de Valme Hospital (Seville), San Cecilio Hospital (Granada), and Puerta del Mar Hospital (Cadiz). Then, the first author contacted the potential participants by phone and provided further information about the study. If the individual was interested in participating, an appointment for the interview was scheduled. We continued to sample, conduct interviews, and analyze data until no new information was obtained and the themes in subsequent interviews achieved thematic saturation. Between November 2015 and December 2016, 12 women were invited to participate. One of them refused due lack of interest in the study, and we could not contact the other woman because she moved out of the country. Due to low rates of women referred to CR, the process of recruiting participants took several months.With the objective of data triangulation, a cardiovascular professional focus group and a semi-structured interview were carried out. Employing intentional sampling, we recruited cardiologists, nurses, and physiotherapists from the CR centers where women have participated. First, we contacted a cardiologist who proposed several professionals from the CR field. Then, the first author contacted them by email and scheduled a meeting suitable for most of the participants. Of the nine professionals invited to participate, three could not participate due to schedule issues. One of the professionals who could not participate in the focus group participated in a semi-structured interview. From the cardiac professionals that participated in the focus group, one cardiologist was in charge of referring patients and the other cardiologist was at her first experiences with CR programs. Three nurses were case managers in the programs and the rest of professionals participated daily in the CR program activities.Face-to-face semi-structured interviews were conducted in participants’ homes or coffee shops. We collected sociodemographic data using a self-administered questionnaire at the end of the interview. We used a semi-structured interview guide that included open-ended questions to learn about the participants’ views of CVD and CR experiences. Questions were focused on the participants’ views of the reasons they had to dropout from CR . The semi-structured interviews and the focus group were then analyzed independently by two investigators  in accordance with grounded theory and, then, triangulated. Data was analyzed manually by coding it. First, researchers read all transcripts and identified meaningful segments, selecting into different subthemes. According to the grounded theory perspective, themes and subthemes were inductively generated and grouped by their thematic similarity. Second, the investigators grouped each subtheme into general themes. General themes were discussed among the entire team of investigators. Finally, representative quotes were collectively selected following domain 3 from COREQ checklist .To ensure the rigor of the results obtained from the semi-structured interviews and the focus group, after data analysis, the participants were contacted and asked to verify the accuracy of the researchers’ understanding of their main points, views, and beliefs. Three participants responded. Two of them agreed with the data obtained, and one gave some clarifications that were included in the data analysis.Women dropped out from three different hospital-based CR programs. Programs took place during mornings. Number of sessions ranged from 10 to 36 sessions, based on the patient’s risk stratification. Exercise classes were twice or three times per week. Educational classes ranged from three to eight. Health professionals involved were cardiologists, primary care physicians, nurses, and physiotherapists, and one of the programs included a voluntary psychologist. Cardiologists were those in charge of referred the patient to the programs, and the main nurse of each program was the responsible for contacting patients.Ten semi-structured interviews were carried out with the women. The participants were between 41 and 70 years old and all were white. Seven participants were married or living with a partner and three were divorced; seven had primary studies and three had secondary studies. Seven were working as housewives, two had paid work, and one was unemployed; eight reported having comorbidities such depressive symptoms, diabetes, arthrosis, or hypertension. The period from the cardiac event prior to start the program was from a minimum of a month to a maximum of seven months. With respect to the dropout moment, two women dropped out after the first session, three after the initial sessions, and other three did not complete by the end.Seven cardiovascular professionals agreed to participate in the study. The professionals were between 28 and 64 years of age and all were white. There were four women; four nurses, two cardiologists, and a physiotherapist. Three had less than ten years of experience in the cardiovascular field.Semi-structured interviews with the women lasted from 22 to 72 minutes, with a median duration of 42 minutes. The focus group lasted 124 minutes, and the professional semi-structured interview lasted 35 minutes. We organized information into themes and subthemes to understand barriers for CR completion. The results of the semi-structured interviews are presented in five main themes and 13 subthemes see .Self-reported health: Women underscored that not feeling recovered from the cardiac event, feeling tired or feeling chest pain during CR exercise were reasons for CR dropout.I told him that I wasn’t well enough yet to start cardiac rehabilitation, because I got tired a lot and then I tried using some of the machines there in rehabilitation, impossible. I knew that I couldn’t do it. Then I said, look, let’s leave it, let’s leave some time.70 years old.– Self-reported mental health: Women reported lack of motivation to participate in CR, feeling depressed, anhedonia, or affliction after suffering CVD.I don’t know, I broke down in a way that I did not … I did not feel like … I don’t know. I wasn’t motivated, I don’t know, I wasn’t, I wasn’t well. I didn’t feel well.48 years old.– And now seeing you like this, psychologically it affects me. A lot. A lot. Look I’m in good spirits and all that, but it affects me. I’ve been a little down, I do not feel I’m even 70% of what I was. All that, psychologically, it’s that it also has an impact.70 years old.– Health beliefs: Beliefs that the cardiovascular condition was not severe and attributing the cardiovascular event to external causes were reported as reasons for dropping out from CR.But you see, I don’t even know what to say. If they’d said, look at me I have a bypass, they gave me … mmm, I have a STENT, I have something in my heart, well, look, I would have thought twice about it. But I’m fine. If it was from the birth control pills. Mmm, I do not need …47 years old.– Family caregiver role: Women reported that their caregiver role interfered with their participation in CR, having to dropout from the program.Man, not me, I may miss a week … but I can’t really, because my family depends on me.51 years old.– It’s that, first it’s being a caregiver and then it’s me.50 years old.– Well … they put me in the mid-morning one, I think it was the one they put me in. But of course, then that was not good because I had to … to be here for the meal and all of the children.60 years old.– Work conflicts: Work commitments were cited by women as reasons for CR dropout. Finding a job during the CR period or the impossibility of leaving the job were reasons for dropping out from the program.I could not finish it all because I got a month of work. And I had to take advantage, I had no choice. Because my husband is unemployed, so I had to take advantage of it. I had to leave.47 years old.– The truth is I was very happy, but impossible. I can’t go. I feel very bad, I can’t. I can’t go anywhere, now in December I have to go to the cardiologist to the six-month visit already. So now I have to find someone, let’s see who I leave …there.51 years old.- Transport: Women reported transportation barriers for attending CR programs. The need for public transport, the timing of transport, or the unavailability of access to a shuttle service to and from the program was cited as reasons for dropping out from CR.Also from the buses, what time do I get here? At 4 or 5 in the afternoon?60 years old.– Also problems with the commute.60 years old.– But then from here to catch the buses, and that’s a lot of inconvenience.60 years old.- Distance: The geographical distance of the CR program was cited as a reason for CR dropout. Women reported that they would not dropout from the program if it was located in their town.If it had been here in the village then no … there wouldn’t have been any problem.60 years old.– Here in PR apparently there isn’t, nor in the university hospital either because from there I was sent to C.47 years old.– Perception of the objective of CR programs: Some women reported being uncertain about the purpose of CR and having misconceptions about the program.For me it wasn’t positive. For me it wasn’t positive. I would have liked … I expected … something else from that.63 years old.– He told me a rehabilitation course. I wanted rehabilitation. I didn’t want information.63 years old.– I don’t know how long the course was, I don’t remember, but I didn’t finish it. But that was why, because I didn’t … I didn’t, didn’t see any benefit.63 years old.– Exercise component: Expecting more exercise and less counseling were reported as reasons for CR dropout. In this line, women reported that they found CR too boring and with too many educational sessions.I wanted to, because I liked the gym more, but I went there the … I like the treadmill. And a lot of talk, lots of talk, but very repetitive, because okay when the talks, are enjoyable, but when he repeats, repeats, repeats.63 years old.– What I wanted was sports, because what I wanted to do was strengthen my heart.63 years old.– Inconvenient timing: Several women reported that the timing of the CR was the reason for dropping out from CR. Moreover, women reported preference for going to CR during the afternoon and not in the mornings.Which is what I don’t agree with, the schedule.47 years old.– I would have … Yes. In the afternoon I have more … Flexibility.51 years old.– CR equipment: Women reported that the need for more equipment in the CR program was a reason for dropping out from CR. Moreover, the participants pointed out the need for better-adjusted equipment.But those high bikes with the back … no, I wasn’t comfortable. And … when, of course, I couldn’t be, I had to be a quarter of an hour on the bicycle and a quarter of an hour on the treadmill.63 years old.– To take turns, because there weren’t enough for everyone. Well, after I did the treadmill I would go home.63 years old– "E: So, do you think that if there had been other types of machines?"Yes, yes. I would have stayed. I would have.63 years old.– Financial assistance for transportation: Cost of public transport and travel cost were reasons reported for CR dropout for women who were in impaired economic circumstances. In addition, women reported that financial assistance for transport was insufficient, and they had to dropout from CR because of this.It’s not 5 euros a week, nor 5 euros every 15 days, it is 5 euros every time I went and if you go three times a week, it’s 15 euros a week. And then I went to the first, the first few times but I haven’t gone any more. Not because I haven’t wanted to but because I have no means to go.47 years old.– Then, then told us they would pay us. But of course, then … uf, who knows when they were going to pay you.48 years old.– They, when you finish the rehabilitation, you request with the bus tickets, you request, but they say that it takes … that takes a long time.47 years old.– Long waiting list: A woman informed that the delay between the cardiac event and the referral to CR was a reason for dropping out from the program.But of course, what happens is that in that month … I thought it was going to be in that month when I was sort of on vacation. Then I could have gone and been happy to because the children, I say "listen up …" and my husband would have watched them. A case like this, right? But of course since they’ve taken about three months to call me because there are a lot of people … well …51 years old.– The professionals highlighted that there might be mistaken beliefs about the negative effects and consequences of CVD in women. These beliefs are widespread among professionals, women patients and their social and family environment, leading to lesser importance being placed on participation in CR programs.In women there is a perception that the undesirable effects and sequelae of ischemic heart disease are lower than in men (…). Therefore, less emphasis is placed on the need to participate in prevention and cardiac rehabilitation programs.- P5The cardiovascular professionals pointed out that women with cardiac events are usually older, have pain, have comorbidities, and are physically impaired. These characteristics might influence the exercise component. Moreover, professionals reported that women usually present more problems doing the exercises due to not having exercised previously.And when you’re going to do the … program with her, on a physical level these are women who are very deteriorated. That is, they are women who have two good days and four bad days. Two good days, four bad days. There is no upward linear progression where you say ah that’s good, come on!–P4And anyway there’s one thing women have a hard time with. Physical exercise. Above all, in people already of a certain age. Let’s see, they haven’t done any physical exercise in their life, okay? So, I’m going to go do physical exercise?–P2Regarding the women’s family caregiver role, professionals highlighted that women try to maintain their role in the family and may find themselves unprotected by their family network.A woman has a heart attack, and there are only very few men who are attentive to her.–P4Vacation is unthinkable. Me on vacation mmm, they can’t come, especially the grandmothers, and what do I do with my grandchildren?–P2The professionals suggested that women dislike being alone in a predominantly male CR group. They reported that they usually incorporate at least two women in a CR group, trying to prevent women from dropping out of the program. However, none of the women reported being the only woman as a reason for CR dropout, even when the interviewer explored this.I never put, well because maybe I have no choice, but … I try never to put a woman alone in a group of men. Provided there is another woman.–P2With respect to financial aid for transportation, the professionals pointed to the cost of public transport and the delay from the administration for covering the costs as barriers to women completing CR.Usually the problem is where you are coming from, that you have certain expenses. The expenses are transfers, even if they are within the same capital you have to take a bus, although we tell them that they can walk. But that is an expense, if they come from a village, especially from a village, this increases the expense a lot. Although the public health system pays a little, but … it pays part, mmm, you get paid afterwards.–P7To the best of our knowledge, this is the first study to describe the women’s perspective of their reasons for CR dropout. In addition, there was no previous qualitative study focused on this topic within the European context. A qualitative approach was used to acquire better understanding of the complex interplay of barriers previously described in the literature. All these reasons can be framed in a 5-level ecological model: a) intrapersonal; b) interpersonal; c) logistical; d) CR program characteristics; and e) health system reasons. Similar to previous reviews –19 womenAs described in previous systematic reviews –19 womenOffering different CR settings could decrease dropout rates. As a recent overview found, community-based or home-based CR programs are equally effective with similar health costs as traditional CR ,25. In tTransport and distance reasons for CR dropout have been widely reported in literature –19. ThesTriangulation of data from women and cardiovascular professionals has highlighted that professionals might not be aware of some of the barriers that women face for CR completion. Cardiovascular professionals have the perspective that women encounter more difficulty with the exercise component, which may lead them to not appropriately encourage those women with higher exercise capacity. However, women reported the need of more exercise and less counseling. One of the practical suggestions that could be implemented to suit specific women’s needs is that exercise and counseling components should be modular. Moreover, professionals should consider offering alternative exercise formats, such as exercise in the community, with the objective of incorporating these exercises into the women’s lifestyle. Finally, women need to perceive more accurately the value and need for completing CR. Nursing education about CR and specific assessment of functional status are essential components that may promote CR completion .As study limitations, we should point out that the study was carried out in one Spanish region and, consequently, some of the vocabulary may have a strong cultural component. A further possible limitation could be that our sample included only Andalusian women who had dropped out from CR. Despite that, reasons reported by women are similar of those that have appeared in the literature, allowing to presume similar results in other countries . The stuThis qualitative study of women’s perceptions of their reasons for dropping out from CR suggests that CR programs need to be flexible and modular in order to promote completion by female participants. The study contributes to the knowledge identifying some of the reasons women set forth, including their preferences for more flexible program schedules, and their expectation of more exercise. Psychological assessment and counseling during CR are also essential for those women who need it. Health system policies should include improved financial assistance. Finally, CR program planning strategies should incorporate communities and primary care centers.


N = 26) were asked to explain how they approach their learning. Using a constructivist grounded theory methodology, a model was constructed describing how effective strategy users manage their learning. In this model, students are driven by a personal learning goal, adopting a predominantly qualitative, or quantitative approach to learning. While learning, students are continually engaged in active processing and self-monitoring. This process is guided by a constant balancing between adhering to established study habits, while maintaining a sufficient degree of flexibility to adapt to changes in the learning environment, assessment demands, and time limitations. Indeed, students reported using several strategies, some of which are traditionally regarded as “ineffective” . However, they used them in a way that fit their learning situation. Implications are discussed for the incorporation of desirable difficulties in higher education.In order to ensure long-term retention of information students must move from relying on surface-level approaches that are seemingly effective in the short-term to “building in” so called “desirable difficulties,” with the aim of achieving understanding and long-term retention of the subject matter. But how can this level of self-regulation be achieved by students when learning? Traditionally, research on learning strategy use is performed using self-report questionnaires. As this method is accompanied by several drawbacks, we chose a qualitative, in-depth approach to inquire about students' strategies and to investigate how students successfully self-regulate their learning. In order to paint a picture of effective learning strategy use, focus groups were organized in which previously identified, effectively self-regulating students ( Self-regulated learning (SRL) refers to the “process whereby students activate and sustain cognitions, behaviors and affects, which are systematically oriented toward the attainment of their goals”  in the way he [other participant] does it, explain it or write it in your own words, but do something that makes it your own.”“Focus group 4, session 1, participant AIn some cases, the PBL system at Maastricht University was indicated as a contributing factor to this active approach, as students are required to be able to discuss their findings in the post-discussions. This became clear in the words used to describe it:I think that is really the key, treat the subject matter in an active way. You're in Maastricht, this is what they ask from you and it also just works.”“Focus group 1, session 1, participant CWell I had, yes in [a different city] I really had to learn from books. (…), so I think that that is just, that's not possible here, in Maastricht you also have to be able to tell everything coherently. So then I made a mix from that, that I, because I was good at studying from books, but that I could also reproduce it in the tutorial group.”“Focus group 2, session 1, participant AIn addition to this active processing, students reported a continuous monitoring of understanding, and adjusting their learning when necessary. In many cases, this monitoring was achieved by various forms of self-testing. A commonly reported tactic for this was explaining the subject matter to another person, either physically or hypothetically:(…) sometimes it is nice when people are like asking questions. Then I hear myself explaining it and then I hear whether I understand it, so to speak.”“Focus group 3, session 1, participant AAnd, uhm, when I look through my case at the end I should actually be able to explain each component that I discuss to someone else. I don't actually do that, but I should be able to.”“Focus group 1, session 1, participant BAlso, students often used externally provided resources such as practice tests to test their knowledge and understanding. Interestingly, the strategies students reported using to correct learning when this monitoring revealed knowledge deficits, were mostly surface-level strategies such as rereading. However, self-testing is an important strategy to improve learning  or open questions .Although students demonstrated metacognitive knowledge of the effectiveness of their strategies and the reasons for using them, this was not the case for all aspects of their strategy use. Students indicated in the second session that, when given a list of all strategies mentioned in the first session and asked to indicate which strategies they used most often, it was difficult to label these strategies properly. As one student indicated:(…) with me mostly with visualizing, that I didn't realize that I was doing it or how I was doing it, until I wrote down that I was doing it. Then I thought, oh yes, I do this quite a lot.”“Focus group 1, session 2, participant BIt was especially difficult for students to indicate how they monitored their understanding, or how they distinguished between important and less important topics and how deep to process the information. Many students indicated this was a “feeling,” or something they had learned from experience.Furthermore, students reported using several strategies which are traditionally regarded as “ineffective,” such as highlighting and rereading of text . An overarching theme in this regard was a focus on creating understanding, finding the logic in the educational material and making connections between different topics and educational activities, as opposed to for example rote learning or memorizing symptoms. One student explained:I always do that [check if you can apply the case to medical practice], I always try to make the case explainable. Just because I like that, then I know that I understand and when it is written down on sheets everywhere then I think oh, why is this value high or that value low. Or, because that lab test, oh yes, that makes sense too. It is not that I will think about what it is [come up with a diagnosis], but I do check to see if it makes sense or not”“Focus group 2, session 1, participant BIn summary, the participants in our study use a variety of strategies to regulate their learning and to incorporate desirable difficulties into this process. In addition to active processing of subject matter and a continuous monitoring of understanding, participants understand the need to obtain long-term storage and understanding, rather than short-term results, in some cases prompted by the perspective of having to become a capable doctor.This paper outlines the results of a study investigating highly effective strategy users' approaches to learning. As a starting point, a survey was administered to students asking about how their study strategies and how they approach their learning. Results from this survey indicated students' adherence to some highly effective strategies , but also the use of some of the less effective strategies . Afterwards, focus groups were organized in order to gain insight into how students use these learning strategies. Specifically, as survey data can provide insight into which strategies students use and how often they use them, the qualitative approach can clarify why students use these strategies, under which circumstances, and how flexible they are regarding their use.either quantitatively or qualitatively oriented. However, from a motivational or self-regulatory perspective, one would expect this variable to fall along a continuum  with self-regulated learning, deep processing, and a propensity to undertake effortful cognitive activities  strategy use , it could be worthwhile to think about other ways to triangulate students' strategy effectiveness.Finally, we chose to use learning questionnaire used by Hartwig and Dunlosky  as a staOverall, this study contributes to the literature by providing an in-depth, qualitative description of how highly self-regulated medical students in a PBL curriculum approach their learning and build in desirable difficulties in their learning process. This model can serve as a framework for further study into the various factors that influence (effective) self-regulation, and as a starting point for designing interventions focused on improving strategy use in less effective students.AdB and RS were responsible for the design and data collection of the study. SR performed analysis of the data, in close collaboration with AdB and RS. SR drafted the article, incorporating edits, and feedback from all other authors . All authors made a substantial contribution to the interpretation of the data for this work.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


A curriculum is dynamic entity and hence, metaphorically, can be considered ‘alive’. Curricular diseases may impair its quality and hence its viability. The quality of a curriculum is typically assessed against certain quality standards only. This approach does not identify the inhibitors impeding the achievement of quality standards. The purpose of this study is to identify not only standards but also inhibitors of curriculum quality, allowing for a more comprehensive assessment of what we coin ‘curriculum viability’.We performed a scoping review of ‘curriculum viability’, after which 13 articles were found eligible through a meticulous search and selection process. We first identified 1233 studies based on matching keywords, title and abstract; 36 of which met our inclusion criteria. After application of the Qualsyst criteria, two independent reviewers performed a thematic analysis of the 13 articles that remained.While all studies reported on standards of quality, only two studies described both standards and inhibitors of quality. These standards and inhibitors were related to educational content and strategy, students, faculty, assessment, educational/work environment, communication, technology and leadership.The framework of curriculum viability thus developed will help identify inhibitors adversely affecting the curriculum viability and remaining hidden or un-noticed when curriculum evaluation is done.The online version of this article (10.1186/s12909-019-1759-8) contains supplementary material, which is available to authorized users. The curriculum has no universal definition. Curriculum theory describes the basis of its development. Its four main components are aims, contents, methods of  teaching and evaluation . This thalive and, in its ideal state, healthy. In humans, the standard values for being non-diabetic are less than 125 mg/dl [inhibitors to the healthy state in humans and contribute to diabetes such as: eating unhealthy food and lack of exercise. Continuing in this metaphorical vein, curricula are like humans. There are curricular inhibitors that may deter them to achieve certain expectations (standards). Relevant literature in curriculum evaluation and accreditation have more emphasis on two aspects, either on setting standards [With evolution of Curriculum, it can be viewed as a sophisticated blend of educational strategies, course content, learning outcomes, educational experiences, assessment, the educational environment, timetable and programme of work , 11. It 25 mg/dl , which itandards  and seektandards . There iagainst different national or global accreditation quality standards [expectations and may include, but are not limited to, the World Federation of Medical Education (WFME) global standards for quality improvement; Liaison Committee for Medical Education (LCME) accreditation standards; and General Medical Council’s (GMC) ‘Tomorrow’s doctor’ standards [The traditional approach to determine a curriculum’s health condition is to evaluate its quality. Curriculum evaluation aims to determine the curriculum’s quality by comparing it tandards . These qtandards –20. In ttandards , whethertandards . Consequtandards , 24.The quality of curricula can be assessed in areas of mission and objectives, educational program, assessment, students, faculty, educational resources, program evaluation, governance and administration and continuous renewal . Such quAs such, insight into the degree to which quality standards have been met may not give a true reflection of a curriculum’s health status. The curriculum may be meeting certain quality standards, but still be fraught with problems (inhibitors) that remain unnoticed without a purposeful effort to detect them .reviewers’ approach, which aims to provide a report on the current status of the curriculum against certain standards in a judgmental perspective, and the interpreters’ approach, which investigates why standards have (or have not) been met in a more analytical stance. Reviewers need only standards and evidence from practice to decide, while interpreters need to study the underlying variables that contribute to the current state of the curriculum. Interpreters are like doctors of the curriculum; they gather information to diagnose the condition from different sources.That said, we can identify two approaches in curriculum evaluation, namely: the Curriculum evaluation is done by reviewers, while we would like to introduce a new term that best suit the job of the interpreters: ‘Curriculum viability’, which is the current state of a curriculum determined by the degree to which particular quality standards have or have not been met, and inhibitors affecting the attainment of those standards. Hence, measures of viability will yield added information that is more valuable for renewal and improvement than quality measures alone. Figure interpreters. For instance, curriculo-sclerosis is extreme departmentalization due to extreme ownership of the subject and fighting for the hours of the discipline. Curriculum carcinoma is curriculum imbalance due to overgrowth of a particular curriculum segment by the disparity in the powerbase of one or more disciplines. Curriculo-arthritis is the miscommunication between disciplines due to limited opportunities for faculty members to meet and interact. Iatrogenic curriculitis is the excessive tampering with the curriculum due to abrupt and unplanned response to adjust or modify changes according to meet societal demands and expectations.The allusion to these inhibitors is not completely new as Abrahamson in 1978 had already identified ‘Diseases of the Curriculum’ and the problems (inhibitors) responsible for them. He described nine diseases in total, along with the underlying problems in some diseases. While revisiting this iconic article, we can clearly identify some inhibitors that would help curriculum future curriculum reforms. Adding more sophistication, one inhibitor  may compromise different aspects of curriculum viability and contribute to different manifestations simultaneously.The above inhibitors clearly affect a curriculum’s viability or well-being, yet they are not considered as part of regular curriculum evaluations based on specific standards , 17, 25.curriculum viability. The study aims to address two research questions: [In summary, we postulate that curriculum viability provides a better foundation for evaluation and improvement than do traditional quality measures and also provides a basis for preventive measures. In the current study, we planned to conduct a scoping review to provide a quick overview to identify not only standards, but also inhibitors of curriculum quality, thereby allowing for a more comprehensive assessment of estions:  What, acestions:  What inhWe have used scoping review as a search strategy as it is of particular use when the topic has not yet been extensively reviewed or is of a complex nature. The purpose of a scoping review is to map the body of literature on a topic area to clarifying definition and conceptual boundaries of topic or field. It shares a number of the same processes as systematic reviews as they both use rigorous and transparent methods to identify and analyze all the relevant literature . CurricuWe started the scoping review by identifying and scrutinising the problem, assembling the review team and formulating research questions using Arksey O’Malley framework of scoping review . ConsequTo identify relevant studies, we used the key terms ‘curriculum’, ‘viability’, ‘quality’, ‘indicators’, ‘education’, ‘evaluation’, ‘issues’, ‘diseases’, ‘inhibitors’, ‘standards and tools’, in addition to the synonyms ‘syllabus’, ‘excellence’, ‘marker’, ‘teaching and learning’, ‘problems’ and ‘instruments. This yielded too many results, majority of which were not relevant to ‘curriculum viability’. The scope of search was kept broad to include the complete breadth of the topic. For this synonymous terms and Boolean Operator ‘OR’ was used. We used iterative search strategy combining different key terms to find the most relevant studies. Boolean Operator ‘AND’ was used to increase the relevance of results and to narrow them down. The details of the results of key terms and Boolean operators is given in Additional file In summary, we employed Boolean operators in concatenations of multiple keywords as in:  AND (Indicators OR Standards) AND  AND (Problems OR Issues OR diseases OR Inhibitors).The article selection process is presented in Fig. In the first phase, the lead author (RAK) identified a total of 1233 records after searching the literature for studies whose keywords, titles and abstracts matched the keywords -or combinations thereof- entered. The selection process and details were shared with the team and verified by three authors . We consequently applied inclusion and exclusion criteria (Table Two authors (RAK and AS) read the 13 articles and performed a thematic analysis of the data . They fiThe 13 articles of sufficient to good quality finally included in the scoping review consisted of realist reviews, mixed-methods research studies, archival research, evaluation research and descriptive surveys. These articles are subsumed in Tables Correspondingly, two main themes emerged from the thematic analysis of these 13 articles: ‘Standards of curriculum quality’ and ‘inhibitors of curriculum quality’ addressing curriculum viability. These two themes, moreover, spanned eight subthemes or areas affecting the quality of the curriculum, specifically: 1) educational strategy and content, 2) students, 3) faculty, 4) assessment, 5) educational environment, 6) curricular communication, 7) technology, and 8) leadership. Based on these results, we created a framework to assess curriculum viability , implemented  and the learned (assessed) curriculum. Mapping identifies the gaps between these phases of curriculum by establishing, relating and analyzing links between different components of the curriculum . HoweverThe framework is mainly intended towards interpreters who aim to find possible causes of an ‘unhealthy curriculum’; either to prevent it from the disease or cure it. For instance, ‘students’ resistance to new curriculum’ will not only explain the impediment of achievement of standards in the area of ‘students’, such as ‘lack of student engagement with faculty’, but it may also effect other areas such as ‘assessment’. Hence the inhibitors may not only be interpreted against their standards but also as stand-alone problems that may afflict any area of the curriculum. The timely identification of these inhibitors prevents the curriculum from becoming less viable or non-viable.One of the limitations of this study is that we were unable to establish links between standards and inhibitors of curriculum quality in a holistic fashion. This is because the literature on inhibitors of curriculum quality was scant. However, our analysis of the literature did result in a framework presenting indicators of curriculum viability that embraces both standards and inhibitors. This framework as depicted in Table Curriculum issues can be diagnosed using different techniques, models and tools. These may include Harden’s Ten Questions , Posner This scoping review explored different standards and inhibitors of curriculum quality. We introduced the term ‘curriculum viability’ as denoting a curriculum’s well-being that can be determined only by considering the degree to which quality standards have been met or not attained as well as the inhibitors affecting the attainment of those standards. We hope that this modified evaluation framework will help identify problems adversely affecting the well-being of a curriculum and remaining hidden or un-noticed when curriculum evaluation is done, thereby contributing to its improvement and innovation.Additional file 1:(Online Search Strategy). (DOCX 24 kb)Additional file 2Assessing the quality of articles and Inter-rater agreement. (DOCX 2207 kb)