- Research article
- Open Access
- Open Peer Review
Managing expectations: cognitive authority and experienced control in complex healthcare processes
© The Author(s). 2017
- Received: 14 March 2017
- Accepted: 8 June 2017
- Published: 5 July 2017
Balancing the normative expectations of others (accountabilities) against the personal and distributed resources available to meet them (capacity) is a ubiquitous feature of social relations in many settings. This is an important problem in the management of long–term conditions, because of widespread problems of non-adherence to treatment regimens. Using long-term conditions as an example, we set out middle range theory of this balancing work.
A middle-range theory was constructed four stages. First, a qualitative elicitation study of men with heart failure was used to develop general propositions about patient and care giver experience, and about the ways that the organisation and delivery of care affected this. Second, these propositions were developed and confirmed through a systematic review of qualitative research literature. Third, theoretical propositions and constructs were built, refined and presented as a logic model associated with two main theoretical propositions. Finally, a construct validation exercise was undertaken, in which construct definitions informed reanalysis of a set of systematic reviews of studies of patient and caregiver experiences of heart failure that had been included in an earlier meta-review.
Cognitive Authority Theory identifies, characterises and explains negotiation processes in in which people manage their relations with the expectations of normative systems – like those encountered in the management of long-term conditions. Here, their cognitive authority is the product of an assessment of competence, trustworthiness and credibility made about a person by other participants in a healthcare process; and their experienced control is a function of the degree to which they successfully manage the external process-specific limiting factors that make it difficult to otherwise perform in their role.
Cognitive Authority Theory assists in explaining how participants in complex social processes manage important relational aspects of inequalities in power and expertise. It can play an important part in understanding the dynamics of participation in healthcare processes. It suggests ways in which these burdens may lead to relationally induced non-adherence to treatment regimens and self-care programmes, and points to targets where intervention may reduce these adverse outcomes.
Negotiating the expectations of others is a routine part of our everyday lives. It involves us in balancing the things that they hold us accountable for (their normative expectations of us), with our ability to deliver on them (our capacity to act). Most readers of this article will have experienced such negotiations. For example, they are at the centre of the practices of appraisal and performance review that take place in universities and other corporations; they run through interactions between patients and healthcare professionals as they examine adherence to treatment regimens; and they dominate relations between the managers and owners of football teams. Our aim in this paper is to offer a middle range theory—Cognitive Authority Theory—that will facilitate understanding of the relational mechanisms involved in balancing out capacity and accountability.
As a worked example of the theory, we use the problem of balancing capacity and accountability in chronic disease management in the community. The growing epidemiological crisis over long-term (chronic) conditions, and the demographic crisis represented by an increasing proportion of older people with multiple long-term conditions , means that clinicians and policy makers increasingly emphasise self-care or self-management as a strategy for patient care. Here, the work of problem recognition and management, and the challenge of ongoing implementation of physical activity and changes to diet; adherence to monitoring and treatment regimens; and responding to the administrative demands of healthcare systems, are explicitly shifted to the patient and caregiver. This has led to the recognition that people experience not just the burden of symptoms, but also burden of treatment. These new burdens are a problem for people who must do the work that stems from this, often in the context of intrusive and debilitating symptoms and their psychosocial consequences [2–4]. Systematic reviews of studies of patient experience consistently reveal that this work is complex and demanding. They also reveal that the combined burdens of symptom and burdens of treatment are sometimes very hard to bear, and that they can overwhelm people with long-term conditions, with the potential for poor health outcomes as a result [5–10]. These poor outcomes may come about when patient and caregiver capacity is exceeded by the self-care workload that is delegated to them by healthcare systems and for which they are accountable .
The idea that adherence to treatment regimens and self-care programmes is work does not fit well with how we understand and evaluate engagement and participation in them. The most commonly used psychological theory in this context, is Bandura’s theory of self-efficacy. It is ‘is concerned with judgments of how well one can execute [the] courses of action required to deal with prospective situations’  (p.122), and focuses on individuals’ beliefs and self-appraisals of their competence in performing specific tasks . The evaluation of self-care interventions often focuses on measuring subjective self-efficacy, and associates improvements in self-efficacy with improvements in self-care. The basic proposition that underpins this kind of approach is that increased confidence in ability to perform a specific set of actions converts into sustained motivation to adhere to a structured regime of activities. This is certainly true in the short-term, and associations with a series of positive health outcomes have commonly been reported [13–16]. However, this picture is complicated because investigations tend to focus on index conditions rather than multi-morbidities, which are associated with lower levels of self-efficacy . In addition, reviews of self-management programmes have detected only small to moderate increases in self-efficacy and selected health outcomes beyond 12 months [18, 19]. The reliance on self-efficacy as a primary outcome in studies of self-care and self-management programmes has meant less attention has been paid to the role of contextual and environmental mechanisms and resources in shaping patient behaviour . Against this background, patient and caregiver experiences of the complexity of care need to be understood both in terms of the work that they do [4, 21–23], and of the ways that healthcare providers call on them to do it . Interventions to improve self-care, to enhance treatment adherence, and to promote shared decision-making in the clinical encounter all depend on these encounters. Recently, researchers in this field have focused on the development of measures of treatment burden [25–29], but we also need to understand the situational and relational factors that shape it.
Our aim in this paper is to set out a theory of the behavioural and social mechanisms through which people balance capacity and accountability in relation to a set of social roles and processes. The theory responds to an important problem in the behavioural sciences: how can we best understand the dynamics of human agency under conditions of constraint ? This is the fundamental problem of structure and agency that runs through contemporary sociology. In this paper, we are not concerned with those elevated debates. Instead, we use self-care regimens for long-term conditions to illuminate the ways that capacity and accountability are balanced out, and show how the theory helps us to understand mechanisms that affect the sustainability of healthcare interventions for people with these conditions. It need not be restricted to these groups and these settings, however. It can be applied to any setting where inequalities of power exist. Clinical setting offer well-characterised examples of domains in which individuals negotiate their personal capacity for action whilst also interacting with institutional accountabilities and organisational expectations. Cognitive Authority Theory also contributes to understanding experiences of Burden of Treatment by identifying and characterising the factors that shape the interactional work required to adhere to self-care and other management regimens, and to access and use healthcare services. In turn, this helps us to see how patient and caregiver capacity are not fixed. Instead, they arise through negotiations about obligations.
Identification of sensitising concepts. First, KH undertook a small-scale elicitation study of older men’s (single phase of semi-structured interviews, n = 10) experiences of medical care for heart failure and comorbidities . This small-scale exploratory qualitative study identified a set of behaviours related to participants’ interactions with health professionals and health care provision. This work was extended through a systematic review by Demain et al.,  that explored how patients sought to manage, and attempted to minimise, the impact of treatments on their lives in order to maintain control. This formed a set of sensitising concepts. Research Ethics Committee approval for the elicitation study described in this paper was granted by NHS (England) South Central Research Ethics Committee on 21 December 2012: REC reference: 12/SC/0638.
Characterisation of theoretical constructs . Next, we integrated sensitising concepts derived from the elictiation study and Demain et al.’s., , systematic review with key elements of the growing body of theoretical and empirical literature on Normalization Processes, experiences of Cumulative Complexity, and Burden of Treatment [2, 4, 7, 29, 37–39], applied to long-term conditions.
Modelling constructs . We then sifted and sorted integrated concepts, writing them as propositions that expressed generic constructs about behaviour, we linked the results of taxonomy building described above to constructs derived from already existing theories relevant to illness burden and treatment burden. This taxonomy focused attention on the relational processes within a healthcare system. We continued this until we reached the most parsimonious possible model of interactions between constructs. We then mapped the relationships between constructs, as shown in Fig. 1. Definitions of these constructs are provided in Table 1.
Construct validation. The final stage of theory building was to develop a set of context-independent propositions about these relations. We then linked these together in a summary statement of the theory. This summary statement characterised and explained assumptions about the role of cognitive authority and experienced control in relational processes within a social system. We used these propositions and their related concepts as a coding framework for attribution analysis of 20 reports of patient and caregiver experiences of heart failure [40–60] that had been collected for an earlier overview of systematic reviews of qualitative studies by May et al., [10, 61]. These studies are described in Table 2., and simple counts  of attributions coded to the constructs of the theory are shown in Fig. 2. In Table 3, we show how sensitising concepts, theoretical constructs, and coded examples from the literature review are linked together.
Definitions of key constructs of the theory
The affective, cognitive, informational, material, physical and relational resources that can be mobilised by individuals and groups.
Normative expectations of actors mobilised by others.
Process Limiting Factors
External factors that challenge a person’s capacity to meet accountabilities
A series of agreed tasks established through discussion and consensus
The product of an actor’s assessment of their the negotiated obligations assigned to them as practicable and the degree to which they successfully manage the external process-specific limiting factors that make it difficult to otherwise perform in their role.
The product of an assessment of competence, trustworthiness and credibility made about a person by other participants in a process.
Type of review
Phenomena of interest
Molloy et al.  (UK)
Mixed methods (integrative) review (16 primary studies)
Role of family caregivers in CHF
Qualitative systematic review (14 primary studies)
Older people’s experiences of CHF
Hopp et al.  (US)
Integrative review (15 primary studies)
Lived experience of CHF amongst older people to inform social work practice with this group.
Barclay et al.  (UK)
Integrative review (23 qalitative studies)
End of life care in CHF.
Dev et al.  (US)
Qualitative metasynthesis (3 primary studies)
Self-care CHF with comorbid conditions
Dickson et al.  (US)
Inegrative review (3 primary studies).
Self-care in CHF with comorbidities.
Kang et al.  (China)
Qualitative metasynthesis (10 primary studies)
Role of family caregivers in CHF
Low et al.  (UK)
Integrative review (48 primary studies)
Patient and professional understandings of disease processes and perceived needs and experiences of care provision in palliative care for CHF.
Tierney et al.  (UK)
Qualitative systematic review (20 primary studies)
Barriers and facilitators of physical activity in CHF; beliefs and behaviors that could be targeted by interventions to promote activity.
Thomas & Clark  (Canada)
Qualitative metasynthesis (6 primary studies)
Sex and gender related factors that shape women’s self-care beliefs and behaviors in CHF.
Clark et al.  (Canada)
Qualitative metasynthesis (58 primary studies)
Factors and processes associated with help-seeking decisions in CHF.
Jani et al.  (UK)
Qualitative systematic review with framework analysis (16 primary studies)
Treatment burden in CHF at end of life.
Procter  (UK)
Qualitative systematic review (5 primary studies)
Contribution of palliative care specialists to end of life care in CHF; barriers to collaborative clinician-patient relations; and patient and carer expectations and needs.
Buck et al.  (Canada)
Integrative review (30 primary studies)
Specific activities by which caregivers contribute to self-care beliefs and behaviors in CHF
Falk et al.  (Sweden)
Mixed methods (Integrative) review (23 primary studies)
Lived experience of self-reported symptoms, illness experience, and self-care management by older patients with CHF
Siabani et al.  Australia)
Qualitative metasynthesis (23 primary studies)
Factors that prevent optimal engagement with self-care regimens in CHF
Sookhoo et al.  (UK)
Qualitative metasynthesis (8 primary studies)
Participation in CHF self-management education programs for CHF
Clark et al.  (Canada)
Qualitative metasynthesis (49 primary studies)
Patients and caregivers’ perceptions of effective self-care in CHF
Dekker  (US)
Qualitative systematic review (13 primary studie)
Experiences of depressive symptoms in CHF
Harkness et al.  (Canada)
Qualitative metasynthesis (47 primary studies)
Strategies for self-care in everyday life
Strachan et al.  (Canada)
Qualitative metasynthesis (45 primary studies)
Contextual factors that influence self-care in CHF
Wingham et al. (UK) 
Meta-ethnography (19 primary studies)
Attitudes, beliefs, expectations and experiences of self-management in CHF
Sensitising concepts, theory constructs and examples from the literature
Initial data sources
ES = Elicitation study;
SR = Demain et al.  Systematic Review
‘Several studies described adjustment to living with CHF as a process. Stull et al. described the entire process of living with CHF as a process of searching for meaning and identity, which started from a ‘crisis event’, followed by phases of ‘diagnosis’, ‘patient’s responses to the diagnosis’, ‘acceptance and adjustment’ and ‘getting on with life’. The ‘crisis event’ described the patient’s perception of the initial manifestation of CHF that placed them in a new and uncertain situation. In the phase of ‘diagnosis’, patients with CHF tried to make sense of their situations by attaching meanings to the symptoms. In this phase, patients relied on prior experiences with similar situations to make sense of the cues in their current situation. The process of searching for new meaning was, however, greatly hindered by fluctuations in their debilitating symptoms, the concomitant hospital admissions, the disruption to their usual role in life and identity, and the limited treatment options’ .
‘Action-based strategies also included enlisting the help of caregivers for assistance with self-care activities. Caregiver assistance ranged from simple reminding to taking over some of the responsibilities such as organizing medications, buying groceries and preparing meals according to dietary guidelines, monitoring symptoms, and navigating the healthcare system as needed. Although some patients felt they did not want to be a burden to caregivers, at the same time they recognized their inability to manage self-care activities without caregiver help’ .
‘Individuals who were able to assimilate formal knowledge accurately and adapt their lives accordingly, while recognising the uncertainty of HF. Advanced self-managers tend to be better educated than those who adopted the above approaches. A distinguishing feature of advanced managers was their understanding of and willingness to be constantly vigilant about their physical and mental state and desire to be in control of their management. They were also able to adapt their medication as they perceived necessary and were keen to manage their own symptoms or to improve participation in social activities. Advanced self-managers also recognised the importance of family members and were mindful that decisions of care also impacted on them’. .
Judgments about the competence of self
Process limiting factors
‘A number of other barriers were identified as factors hindering adherence, including patient knowledge deficits, physical limitations, financial hardship, low motivation or negative experiences or beliefs toward treatment, limited self-efficacy, and difficulty coping. Follow-up attendance was limited by patients’ difficulty getting to the hospital, including the cost of transportation, problems with public transit, intolerance of crowds, and the inability to walk long required distances’ .
‘Financial challenges were consistently reported by patients to be a barrier to self-care, particularly in relation to diet and medication management. High costs of medications and healthy foods competed with other life demands, at times straining patients’ ability to meet even their basic needs. Patients could engage in a trade-off where the needs and costs of daily life were prioritized over adherence to self-care, requiring them to make difficult financial and health decisions without health professional advice. For example, patients chose to fill certain prescriptions over others or to skip or reduce their doses of medications. This was particularly true for patients who required insurance to access treatment, as this quote so eloquently captures: “The doctor gives you 6 prescriptions and Medicaid only pays for 3, so what happens with the other 3? In that case I just don’t buy them” .
Gatekeeping and rationing
Structurally induced non-adherence
Diffusion of responsibility
‘Studies also reported poor and inappropriate care practice, in terms of health professionals not engaging patients in their care and decision making, patients not receiving sufficient information about diagnosis or condition management, insensitive approaches to female patient needs, and improper medication scheduling. Other examples of poor care practice included health providers creating unnecessary fears, not tending to immediate needs such as toileting assistance and ignoring patients. When patients experienced poor quality of care they reported lack of confidence in care providers, confusion, delays in seeking care and were deterred from maintaining positive self-care practices. Naturally, prior negative experience of accessing services discouraged patients from seeking timely help’ .
‘Although effective communication with health professionals was seen to be a key to high quality care, patients perceived that health professionals exercised ‘information holding’. They also reported health professionals: did not listen, provided inconsistent or vague information, did not follow up and had poor communication with other health professionals. The need for better explanations of heart failure and its symptoms from professionals were widely noted. Some health professionals recognized the need for good communication with patients, but were constrained by lack of time in consultations. Patients could perceive that professionals had exclusive responsibility for management/symptom monitoring or that responsibility was shared’ .
Agreements about collaboration
‘Patients often feel disempowered, finding clinicians unapproachable and reluctant to give information: they may see questions about prognosis as taboo be reluctant to ask questions, especially if older, be unsure what questions to ask, be afraid to ‘put the doctor on the spot’, and fear being seen as difficult, demanding, or complaining. Some hesitate to visit a doctor, fearing unwelcome and unwanted hospital admission, or find themselves too fatigued and unwell to be able to concentrate and absorb information’ .
Patients reject medical authority
Calculation of options
Judgments about the competence of others
Patients call for specialist not generalist help
‘Patients losing a sense of control over their illness were reported as connecting the loss of control with unpredictable deterioration in health, high blood pressure, shortness of breath and sleeplessness and over their life in terms of loss of independence, financial security and participation in CHF management decision-making . Losing this sense of control, or ‘feeling imprisoned in illness’, as Ekman described, was also associated with various restrictions imposed on their lives due to the need to adhere to disease management, resulting in feelings of helplessness, powerlessness and that premature death was unavoidable’ .
Summary statement of the theory
The degree to which population actors implicated in a complex social process possess Cognitive Authority depends on them balancing their available capacity against the expectations of others. Their experienced control over a situation or process depends on their ability to negotiate and manage process-specific limiting factors that challenge their capacity to achieve goals.
Cognitive Authority and Experienced Control are mediated by actors’ capacity, defined as the extent to which an actor possesses and can mobilize personal resources, (which may be affective, cognitive, informational, material, physical and relational), in the service of those goals; and by their accountability, defined as the extent to which others impute to the actor the ability to mobilize those resources to meet their expectations.
Capacity and accountability are moderated by interaction processes that lead to negotiated obligations. These negotiated obligations may be temporary, but they provide a normative structure for future action because they define the degree of accountability that can be imputed to an actor.
When population actors in a complex relational process are faced with normative expectations of institutional actors that exceed their perceived capacity, they will seek opportunities to negotiate the relational balance between capacity and accountability.
In relation to (d), the theory proposes that the cognitive authority possessed by a population actor depends on their degree of success in balancing their available capacity against the accountabilities imputed to them by institutional actors; and that the degree of sustained motivation to meet negotiated accountabilities is proportionate to the cognitive authority possessed by population actors.
When population actors in a complex relational process are faced with demands of process-specific limiting factors that exceed their perceived capacity, they will seek opportunities to negotiate the practical balance between capacity and practical demands.
In relation to (f), the theory proposes that the degree of experienced control possessed by a population actor depends on their degree of success in balancing their available capacity against the constraining effects of the contexts in which these tasks must be undertaken; and that the degree of sustained motivation to meet negotiated accountabilities is proportionate to population actors’ experienced control over process-specific limiting factors.
The problem of relationally induced non-adherence
Given the empirical focus of our account of Cognitive Authority Theory, it is not surprising that one important area for its application is in understanding the management of long-term or chronic conditions. As we observed earlier in the paper, research framed by Normalization Process Theory , the Cumulative Complexity Model , and Burden of Treatment Theory , has focused on understanding the relationship between the workload that healthcare providers ask patients to take on, and the patient’s capacity to do this work. This has led to the notion that the diminution of patient participation in self-care programmes and adherence to treatment regimens over time may be structurally induced , when patients and caregivers become overburdened by the demands of care. Put simply, workload becomes too much to manage. Cognitive Authority Theory suggests that there is another dimension to patient experience that is not fully accounted for in either the Cumulative Complexity Model or Burden of Treatment Theory. This is that the mechanisms that lead to diminution in participation in self-care programmes and treatment regimens over time have an important relational component.
The concept of relationally induced non-adherence is potentially important. Like structurally induced non-adherence, it is iatrogenic. It may arise when institutional actors either cannot or will not enter into negotiations over population actors’ beliefs or knowledge about what is possible within the context of an experienced process. In healthcare, this means that the patient’s claim to cognitive authority is denied, (and it is not far from this to a deficit model of patient beliefs and behaviours), and their attempts to exercise experienced control over process-limiting factors may be complicated by paternalistic models of care.
Patients, caregivers and health professionals vary in their need and desire for authority and control  and research has shown that agreement on healthcare responsibilities between patients and health professionals is associated with better health outcomes . We propose that the negotiation of doable tasks and reasonable obligations positively influences cognitive authority and experienced control. Clinical tools already exist that can be applied to the problem of relationally induced non-adherence to treatment regimens and programme participation. These include high quality shared decision-making tools [102, 103], and consultation models of deliberative and collaborative encounters between patients, caregivers, and healthcare providers .
The theory of Cognitive Authority presented in this paper helps us understand key mechanisms involved in configuring people’s experiences of long-term life limiting conditions. Although we have applied it to experiences of long-term conditions, it is context-independent in its fundamentals, and can be applied to unequally formed relations between population (less powerful) and institutional (more powerful) actors in a wide variety of situations. In this paper, we have shown how the theory can be used to explore the relational content of patient work in the management of long-term conditions. This has important implications for healthcare provider organisations, for whom structurally or relationally induced non-adherence is a potential problem. It highlights the importance of implementing shared decision-making techniques in the clinical encounter in ways that enable clinicians, patients and caregivers to focus on achievable and sustainable objectives. Beyond this, it provides a way of showing the effects of normative expectations expressed by healthcare providers and policy-makers. When these fit poorly with patients’ and caregivers’ actual capacity for participation, and when they fail to take into account the effects of system level limiting mechanisms, then non-adherence to treatment regimens can be relationally induced. Better understanding of the processes and mechanisms characterised in this paper will lead to ways to improve support for patients and healthcare professionals in making help-seeking behaviours more appropriately focused, and self-care regimens more sustainable.
We have focused on the ways that Cognitive Authority Theory explains important aspects on relations between people with long-term conditions and clinicians. There is no reason, however, to restrict it to this. At the beginning of this paper, we made the point that negotiating normative expectations is ubiquitous in social relations. The approach we have presented here can be readily applied to relations between health professionals, between patients and caregivers—or between participants in any set of organised social relations where inequalities of power are negotiated. Cognitive Authority Theory explains (a) mechanisms that shape experienced control over process-specific limiting factors, within a process characterised by status passage, and (b) the role of the cognitive authority of participants in motivating and shaping that process. Future empirical research will refine its constructs and test its predictions
Dedication . We mourn the loss of Peter Cripps, whose experiences inspired much of the work leading to KJH’s contribution to this paper. What we know of his final days and hours exemplifies the brutal incivilities that follow from professional rejection of the cognitive authority of patients and caregivers, and institutionalised indifference to their attempts to gain some experienced control over the processes of their care. We wish it had not been so.
Key ideas developed in this paper have been presented in seminars of the Complex Healthcare Processes Research Group, University of Southampton, UK (February 2016), and the Institute of Health Sciences, University of Stavanger, Norway (October 2016). We are grateful to participants in those meetings, and to our collaborators in the work leading up to this paper. We thank members of the International Working Group on Minimally Disruptive Medicine, Kasey Boehmer, David Eton, Katie Gallacher, Frances Mair, Victor M Montori, and Nathan Shippee. Along with Anne Sophie Darlington, Claire Foster, Chloe Grimmett, Christine May, Alison Richardson and Theresa Wiseman, they commented very generously on the ideas presented here.
KJH and CRM were supported by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Wessex, which is a partnership between Wessex NHS organizations and partners and the University of Southampton. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. Funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Availability of data and materials
Please contact KJH.
KJH and CRM contributed equally to the work and are joint guarantors of the paper. Both authors read and approved the final manuscript.
Katherine Hunt is a post-doctoral Faculty Research Fellow and Carl May is Professor of Healthcare Innovation in the Complex Healthcare Processes Research Group in the Faculty of Health Sciences, University of Southampton.
CRM is a member of the international editorial advisory board of BMC Health Services Research. The authors declare that they have no other competing interests.
Consent for publication
Ethics approval and consent to participate
Research Ethics Committee approval for the elicitation study described in this paper was granted by NHS (England) South Central Research Ethics Committee on 21 December 2012: REC reference: 12/SC/0638. Written consent to join the study was obtained from all participants.
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