Health care relationships ('person centred' + ) by Vikki Entwistle
There are various reasons why efforts to promote “support for self-management” have rarely delive... more There are various reasons why efforts to promote “support for self-management” have rarely delivered the kinds of sustainable improvements in healthcare experiences, health and wellbeing that policy leaders internationally have hoped for. This paper explains how the basis of failure is in some respects built into the ideas that underpin many of these efforts.
When (the promotion of) support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited and somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes (and then of failing to notice that as harmful); limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management.
We suggest that a focus on enabling people to live (and die) well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice.
Background
Health policies internationally advocate ‘support for self-management’, but it is not ... more Background
Health policies internationally advocate ‘support for self-management’, but it is not clear how the promise of the concept can be fulfilled.
Objective
To synthesize research into professional practitioners’ perspectives, practices and experiences to help inform a reconceptualization of support for self-management.
Design
Critical interpretive synthesis using systematic searches of literature published 2000–2014.
Findings
We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self-management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner–patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice.
Discussion and conclusion
Broader approaches seem necessary to fulfil the promise of support for self-management, especially for patient empowerment. A commitment to enable people to live well with long-term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention.
Health services internationally struggle to ensure health care is "person-centered" (or similar).... more Health services internationally struggle to ensure health care is "person-centered" (or similar). In part, this is because there are many interpretations of "person-centered care" (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients' experiences of health care delivery.
Background: Low literacy is a significant problem across the developed world. A considerable body... more Background: Low literacy is a significant problem across the developed world. A considerable body of research has reported associations between low literacy and less appropriate access to healthcare services, lower likelihood of self-managing health conditions well, and poorer health outcomes. There is a need to explore the previously neglected perspectives of people with low literacy to help explain how low literacy can lead to poor health, and to consider how to improve the ability of health services to meet their needs. Methods: Two stage qualitative study. In-depth individual interviews followed by focus groups to confirm analysis and develop suggestions for service improvements. A purposive sample of 29 adults with English as their first language who had sought help with literacy was recruited from an Adult Learning Centre in the UK.
OBJECTIVE:
Patients' experiences are often treated as health care quality indicators. Our aim wa... more OBJECTIVE:
Patients' experiences are often treated as health care quality indicators. Our aim was to identify the range of experiences of health care delivery that matter to patients and to produce a conceptual map to facilitate consideration of why they matter.
METHODS:
Broad-based review and critical interpretive synthesis of research literature on patients' perspectives of health care delivery. We recorded experiences reported by a diverse range of patients on 'concept cards', considered why they were important, and explored various ways of organizing them, including internationally recognized health care quality frameworks. We developed a conceptual map that we refined with feedback from stakeholders.
RESULTS:
Patients identify many health care experiences as important. Existing health care quality frameworks do not cover them all. Our conceptual map presents a rich array of experiences, including health care relationships (beyond communication) and their implications for people's valued capabilities (e.g. to feel respected, contribute to their care, experience reciprocity). It is organized to reflect our synthesis argument, which links health care delivery to what people are enabled (or not) to feel, be and do. The map highlights the broad implications of the social dynamics of health care delivery. Experiences are labelled from a patient's perspective, rendering the importance of responsiveness to individuals axiomatic.
CONCLUSIONS:
Our conceptual map identifies and helps explain the importance of diverse experiences of health care delivery. It challenges and helps policy-makers, service providers and researchers to attend to the range of experiences that matter, and to take seriously the need for responsiveness to individuals.
Shared decision-making is increasingly advocated to enable patients to participate in decisions t... more Shared decision-making is increasingly advocated to enable patients to participate in decisions that affect them, to protect patients from insufficiently individualized supply-driven care, and to reduce health care costs and waste by avoiding the provision of unwanted interventions.1–3
The concept of shared decision-making can be understood in several ways. A number of definitions and descriptive models have been offered, emphasizing different aspects of clinician-patient interaction and decision-making.4 Most definitions and models can be variously interpreted when considered in relation to the complex realities of healthcare provision. Clinicians' understandings of shared decision-making can have important implications for clinical practice.5 They can diverge, for example, over questions of whether, when and how it is appropriate to recommend a particular treatment or challenge a patient's expressed preferences.
This paper considers the practical and ethical implications of, ‘narrow’ and ‘broader’ ways of thinking about shared decision-making. It illustrates how narrow understandings of shared decision-making, which focus on informing patients so they can choose between options, can make it hard for many patients to share meaningfully in decision-making that affects them. It then outlines how broader understandings, which allow for more clinician influence and extend the relevance of shared decision-making to diverse situations, can be justified in principle and appraised for appropriateness.
Shared-decision-making approaches, by recognising the autonomy and responsibility of both health ... more Shared-decision-making approaches, by recognising the autonomy and responsibility of both health professionals and patients, aim for an ethical 'middle way' between 'paternalistic' and 'consumerist' models of clinical decision-making. In this paper we explore the relative strengths and weaknesses of narrow and broad conceptions of shared decision-making. In the first part of the paper we construct and summarise an archetypal narrow conception of shared decision-making (a conception which does not coincide with any specific published model but which reflects features of a variety of models). We show the shortcomings of such a conception and, in particular, the need to broaden out our thinking about shared-decision making if the ethical (and instrumental) goals of shared-decision-making are to be realised. In the second part of the paper we acknowledge and explore the problems of operating with broader conceptions of shared decision-making by considering the analogies and disanalogies between health professional-patient relationships and familiar examples of 'openended' relationships (e.g. friendships). We conclude by arguing that the illustrated 'trade-offs' between narrow and broad conceptions suggest the need to find ways, in principle and in practice, of taking seriously both patient autonomy and autonomysupportive professional interference.
Personal autonomy is widely valued. Recognition of its vulnerability in health care contexts led ... more Personal autonomy is widely valued. Recognition of its vulnerability in health care contexts led to the inclusion of respect for autonomy as a key concern in biomedical ethics. The principle of respect for autonomy is usually associated with allowing or enabling patients to make their own decisions about which health care interventions they will or will not receive. In this paper, we suggest that a strong focus on decision situations is problematic, especially when combined with a tendency to stress the importance of patients’ independence in choosing. It distracts attention from other important aspects of and challenges to autonomy in health care. Relational understandings of autonomy attempt to explain both the positive and negative implications of social relationships for individuals’ autonomy. They suggest that many health care practices can affect autonomy by virtue of their effects not only on patients’ treatment preferences and choices, but also on their self-identities, self-evaluations and capabilities for autonomy. Relational understandings de-emphasise independence and facilitate well-nuanced distinctions between forms of clinical communication that support and that undermine patients’ autonomy. These understandings support recognition of the value of good patient-professional relationships and can enrich the specification of the principle of respect for autonomy.
Social Science & Medicine, 2008
Patient involvement in decision-making is widely regarded as an important feature of good quality... more Patient involvement in decision-making is widely regarded as an important feature of good quality healthcare. Policy-makers have been particularly concerned to ensure that patients are informed about and enabled to choose between relevant treatment options, but it is not clear how patients understand and value involvement.
388661 or (01224 749720 -home, not for publication).
Patient Education and Counseling, 2006
Experiments have found that choosing between placebo analgesics can reduce pain more than being a... more Experiments have found that choosing between placebo analgesics can reduce pain more than being assigned a placebo analgesic. Because earlier research has shown prior experience moderates choice effects in other contexts, we tested whether prior experience with a pain stimulus moderates this placebo-choice association. Before a cold water pain task, participants were either told that an inert cream would reduce their pain or they were not told this information. Additionally, participants chose between one of two inert creams for the task or they were not given choice. Importantly, we also measured prior experience with cold water immersion. Individuals with prior cold water immersion experience tended to display greater placebo analgesia when given choice, whereas participants without this experience tended to display greater placebo analgesia without choice. Prior stimulus experience appears to moderate the effect of choice on placebo analgesia.
Journal of Health Organisation and Management, 2006
This paper considers some implications of recent developments relating to patient safety for unde... more This paper considers some implications of recent developments relating to patient safety for understandings of trust in health care contexts. Conceptual analysis focusing on patients' trust in health care providers and health care providers' trust in patients. Growing awareness of the scale of the problem of iatrogenic harm has prompted concerns that patients' trust in health care providers may be threatened and/or become inappropriate or dysfunctional. In principle, however, patients' trust may be both well placed and compatible with current understandings of safety problems and efforts to address these. Contemporary understandings of patient safety suggest that, to be deemed trustworthy, health care providers should make vigorous efforts to improve patient safety, be honest about safety issues, enable patients to contribute effectively to their own safety, and provide appropriate care and support after safety incidents. Patients who trust health care providers need not be ignorant of patient safety problems and may be vigilant in the course of their care. Iatrogenic harms do not necessarily reflect breeches of trust (not all such harms are yet preventable), and patients who are harmed might in some circumstances appropriately forgive and resume trusting. Health care providers may feel vulnerable to patients in several respects. From their perspective, trustworthy patients will act competently to optimise the outcomes of their health care efforts and to preserve health care providers' good reputations where those are justified. Providers' trust in patients may strengthen patients' trust in them and facilitate safety improvement work. Shows how, in principle, trust can be compatible with current understandings of patient safety issues and may enhance efforts to improve patient safety.
Patient Education and Counseling, 2004
In the context of a qualitative study exploring patients&... more In the context of a qualitative study exploring patients' participation in decision-making, we investigated how people interpret and respond to structured questions about decision-making about their health care. Seventy-four participants who attended consultations in five clinical areas completed structured measures of decision-making and discussed their responses during interviews. They identified a range of decisions as having being made in their consultations. People who picked particular responses on measures of participation in and satisfaction with decision-making gave varied explanations for these, not all of which were consistent with the way their responses are usually interpreted. The interview data suggest that people's evaluations of decisions to follow a particular course of action were influenced by various factors including what they focused on as the alternative, their perceptions of constraints on choices, and their assessment of how good the best possible solution was. Responses to simple structured measures of participation in and satisfaction with decision-making should be interpreted with caution. They are not reliably attributable to health care providers' actions and are thus unsuitable for performance assessment purposes.
Social Science & Medicine, 2001
A number of authors have developed sets of role descriptions that have been used to classify pati... more A number of authors have developed sets of role descriptions that have been used to classify patients' roles in decisions about their health care as either active, collaborative or passive. We explored the validity of two such measures. Twenty women who had recently had a hysterectomy described their experiences of treatment decisionmaking in their own words and picked role descriptions from the Control Preferences Scale (Degner, Sloan, J. Clin. Epidemiol. 45 (1992) 941) and Patient Preferences for Control measure (Bradley et al., Fam. Med. 28 (1996) 496), both phrased in the past tense to assess roles played. The women explained why they had picked particular role descriptions. We compared the women's selections from the two measures and considered the relationship between their narrative descriptions and the role descriptors they picked. Several women found it hard to find an appropriate role description among those they were offered. Some picked apparently conflicting statements from the two measures. The role classifications that would be made on the basis of the women's chosen role descriptions did not always seem appropriate when compared with their narrative descriptions of how treatment decisions were reached. Women gave a range of explanations for choosing the role descriptors that they did, and some women who picked different role descriptions gave similar explanations for doing so. These findings suggest that there are problems with the validity of some currently used measures of patients' participation in health care decision-making. Researchers need to pay more attention to the key features of participation in decision-making and develop measures that can distinguish between these. #
International Journal of Technology Assessment in Health Care, 1998
Screening, links to public health ethics by Vikki Entwistle
Many countries are experiencing increasing levels of demand for access to assisted reproductive t... more Many countries are experiencing increasing levels of demand for access to assisted reproductive technologies (ART). Policies regarding who can access ART and with what (if any) support from a collective purse are highly contested, raising questions about what state responses are justified. Whilst much of this debate has focused on the status of infertility as a disease, we argue that this is something of a distraction, since disease framing does not provide the far-reaching, robust justification for state support that proponents of ART seem to suppose. Instead, we propose that debates about appropriate state responses should consider the various implications for health and broader well-being that may be associated with difficulties starting a family. We argue that the harms and disruption to valued life projects of subfertility-related suffering may provide a stronger basis for justifying state support in this context. Further, we suggest that, whilst ART may alleviate some of the harm resulting from subfertility, population-level considerations can indicate a broader range of interventions aimed at tackling different sources of subfertility-related harm, consistent with broader public health aims.
Objectives
‘Nanny-state’ accusations can function as powerful rhetorical weapons against interven... more Objectives
‘Nanny-state’ accusations can function as powerful rhetorical weapons against interventions intended to promote public health. Public health advocates often lack effective rebuttals to these criticisms. Nanny-state accusations are largely accusations of paternalism. They conjure up emotive concern about undue governmental interference undermining peoples' autonomy. But autonomy can be understood in various ways. We outline three main conceptions of autonomy, argue that these that can underpin three different conceptions of paternalism, and consider implications for responses to nanny-state accusations and the assessment of public health interventions.
Study design and methods
Detailed conceptual analysis.
Results
The conceptions of paternalism implicit in nanny-state accusations generally depend on libertarian conceptions of autonomy. These reflect unrealistic views of personal independence and do not discriminate sufficiently between trivial and important freedoms. Decisional conceptions of paternalism, like their underlying decisional conceptions of autonomy, have limited applicability in public health contexts. Relational conceptions of paternalism incorporate relational conceptions of autonomy, so recognize that personal autonomy depends on socially shaped skills, self-identities and self-evaluations as well as externally structured opportunities. They encourage attention to the various ways that social interactions and relationships, including disrespect, stigmatization and oppression, can undermine potential for autonomy. While nanny-state accusations target any interference with negative freedom, however trivial, relational conceptions direct concerns to those infringements of negative freedom, or absences of positive freedom, serious enough to undermine self-determination, self-governance and/or self-authorization.
Conclusion
Relational conceptions of autonomy and paternalism offer public health policymakers and practitioners a means for rebutting nanny-state accusations, and can support more nuanced and more appropriately demanding appraisals of public health interventions.
Objectives: To examine how general practitioners (GPs) in the UK and GPs in Australia explain the... more Objectives: To examine how general practitioners (GPs) in the UK and GPs in Australia explain their prostate-specific antigen (PSA) testing practices and to illuminate how these explanations are similar and how they are different.
Design: A grounded theory study.
Setting: Primary care practices in Australia and the UK.
Participants: 69 GPs in Australia (n=40) and the UK (n=29). We included GPs of varying ages, sex, clinical experience and patient populations. All GPs interested in participating in the study were included.
Results: GPs' accounts revealed fundamental differences in whether and how prostate cancer screening occurred in their practice and in the broader context within which they operate. The history of prostate screening policy, organisational structures and funding models appeared to drive more prostate screening in Australia and less in the UK. In Australia, screening processes and decisions were mostly at the discretion of individual clinicians, and varied considerably, whereas the accounts of UK GPs clearly reflected a consistent, organisationally embedded approach based on local evidence-based recommendations to discourage screening.
Conclusions: The GP accounts suggested that healthcare systems, including historical and current organisational and funding structures and rules, collectively contribute to how and why clinicians use the PSA test and play a significant role in creating the mindlines that GPs employ in their clinic. Australia's recently released consensus guidelines may support more streamlined and consistent care. However, if GP mindlines and thus routine practice in Australia are to shift, to ultimately reduce unnecessary or harmful prostate screening, it is likely that other important drivers at all levels of the screening process will need to be addressed.
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Health care relationships ('person centred' + ) by Vikki Entwistle
When (the promotion of) support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited and somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes (and then of failing to notice that as harmful); limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management.
We suggest that a focus on enabling people to live (and die) well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice.
Health policies internationally advocate ‘support for self-management’, but it is not clear how the promise of the concept can be fulfilled.
Objective
To synthesize research into professional practitioners’ perspectives, practices and experiences to help inform a reconceptualization of support for self-management.
Design
Critical interpretive synthesis using systematic searches of literature published 2000–2014.
Findings
We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self-management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner–patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice.
Discussion and conclusion
Broader approaches seem necessary to fulfil the promise of support for self-management, especially for patient empowerment. A commitment to enable people to live well with long-term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention.
Patients' experiences are often treated as health care quality indicators. Our aim was to identify the range of experiences of health care delivery that matter to patients and to produce a conceptual map to facilitate consideration of why they matter.
METHODS:
Broad-based review and critical interpretive synthesis of research literature on patients' perspectives of health care delivery. We recorded experiences reported by a diverse range of patients on 'concept cards', considered why they were important, and explored various ways of organizing them, including internationally recognized health care quality frameworks. We developed a conceptual map that we refined with feedback from stakeholders.
RESULTS:
Patients identify many health care experiences as important. Existing health care quality frameworks do not cover them all. Our conceptual map presents a rich array of experiences, including health care relationships (beyond communication) and their implications for people's valued capabilities (e.g. to feel respected, contribute to their care, experience reciprocity). It is organized to reflect our synthesis argument, which links health care delivery to what people are enabled (or not) to feel, be and do. The map highlights the broad implications of the social dynamics of health care delivery. Experiences are labelled from a patient's perspective, rendering the importance of responsiveness to individuals axiomatic.
CONCLUSIONS:
Our conceptual map identifies and helps explain the importance of diverse experiences of health care delivery. It challenges and helps policy-makers, service providers and researchers to attend to the range of experiences that matter, and to take seriously the need for responsiveness to individuals.
The concept of shared decision-making can be understood in several ways. A number of definitions and descriptive models have been offered, emphasizing different aspects of clinician-patient interaction and decision-making.4 Most definitions and models can be variously interpreted when considered in relation to the complex realities of healthcare provision. Clinicians' understandings of shared decision-making can have important implications for clinical practice.5 They can diverge, for example, over questions of whether, when and how it is appropriate to recommend a particular treatment or challenge a patient's expressed preferences.
This paper considers the practical and ethical implications of, ‘narrow’ and ‘broader’ ways of thinking about shared decision-making. It illustrates how narrow understandings of shared decision-making, which focus on informing patients so they can choose between options, can make it hard for many patients to share meaningfully in decision-making that affects them. It then outlines how broader understandings, which allow for more clinician influence and extend the relevance of shared decision-making to diverse situations, can be justified in principle and appraised for appropriateness.
Screening, links to public health ethics by Vikki Entwistle
‘Nanny-state’ accusations can function as powerful rhetorical weapons against interventions intended to promote public health. Public health advocates often lack effective rebuttals to these criticisms. Nanny-state accusations are largely accusations of paternalism. They conjure up emotive concern about undue governmental interference undermining peoples' autonomy. But autonomy can be understood in various ways. We outline three main conceptions of autonomy, argue that these that can underpin three different conceptions of paternalism, and consider implications for responses to nanny-state accusations and the assessment of public health interventions.
Study design and methods
Detailed conceptual analysis.
Results
The conceptions of paternalism implicit in nanny-state accusations generally depend on libertarian conceptions of autonomy. These reflect unrealistic views of personal independence and do not discriminate sufficiently between trivial and important freedoms. Decisional conceptions of paternalism, like their underlying decisional conceptions of autonomy, have limited applicability in public health contexts. Relational conceptions of paternalism incorporate relational conceptions of autonomy, so recognize that personal autonomy depends on socially shaped skills, self-identities and self-evaluations as well as externally structured opportunities. They encourage attention to the various ways that social interactions and relationships, including disrespect, stigmatization and oppression, can undermine potential for autonomy. While nanny-state accusations target any interference with negative freedom, however trivial, relational conceptions direct concerns to those infringements of negative freedom, or absences of positive freedom, serious enough to undermine self-determination, self-governance and/or self-authorization.
Conclusion
Relational conceptions of autonomy and paternalism offer public health policymakers and practitioners a means for rebutting nanny-state accusations, and can support more nuanced and more appropriately demanding appraisals of public health interventions.
Design: A grounded theory study.
Setting: Primary care practices in Australia and the UK.
Participants: 69 GPs in Australia (n=40) and the UK (n=29). We included GPs of varying ages, sex, clinical experience and patient populations. All GPs interested in participating in the study were included.
Results: GPs' accounts revealed fundamental differences in whether and how prostate cancer screening occurred in their practice and in the broader context within which they operate. The history of prostate screening policy, organisational structures and funding models appeared to drive more prostate screening in Australia and less in the UK. In Australia, screening processes and decisions were mostly at the discretion of individual clinicians, and varied considerably, whereas the accounts of UK GPs clearly reflected a consistent, organisationally embedded approach based on local evidence-based recommendations to discourage screening.
Conclusions: The GP accounts suggested that healthcare systems, including historical and current organisational and funding structures and rules, collectively contribute to how and why clinicians use the PSA test and play a significant role in creating the mindlines that GPs employ in their clinic. Australia's recently released consensus guidelines may support more streamlined and consistent care. However, if GP mindlines and thus routine practice in Australia are to shift, to ultimately reduce unnecessary or harmful prostate screening, it is likely that other important drivers at all levels of the screening process will need to be addressed.
When (the promotion of) support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited and somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes (and then of failing to notice that as harmful); limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management.
We suggest that a focus on enabling people to live (and die) well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice.
Health policies internationally advocate ‘support for self-management’, but it is not clear how the promise of the concept can be fulfilled.
Objective
To synthesize research into professional practitioners’ perspectives, practices and experiences to help inform a reconceptualization of support for self-management.
Design
Critical interpretive synthesis using systematic searches of literature published 2000–2014.
Findings
We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self-management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner–patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice.
Discussion and conclusion
Broader approaches seem necessary to fulfil the promise of support for self-management, especially for patient empowerment. A commitment to enable people to live well with long-term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention.
Patients' experiences are often treated as health care quality indicators. Our aim was to identify the range of experiences of health care delivery that matter to patients and to produce a conceptual map to facilitate consideration of why they matter.
METHODS:
Broad-based review and critical interpretive synthesis of research literature on patients' perspectives of health care delivery. We recorded experiences reported by a diverse range of patients on 'concept cards', considered why they were important, and explored various ways of organizing them, including internationally recognized health care quality frameworks. We developed a conceptual map that we refined with feedback from stakeholders.
RESULTS:
Patients identify many health care experiences as important. Existing health care quality frameworks do not cover them all. Our conceptual map presents a rich array of experiences, including health care relationships (beyond communication) and their implications for people's valued capabilities (e.g. to feel respected, contribute to their care, experience reciprocity). It is organized to reflect our synthesis argument, which links health care delivery to what people are enabled (or not) to feel, be and do. The map highlights the broad implications of the social dynamics of health care delivery. Experiences are labelled from a patient's perspective, rendering the importance of responsiveness to individuals axiomatic.
CONCLUSIONS:
Our conceptual map identifies and helps explain the importance of diverse experiences of health care delivery. It challenges and helps policy-makers, service providers and researchers to attend to the range of experiences that matter, and to take seriously the need for responsiveness to individuals.
The concept of shared decision-making can be understood in several ways. A number of definitions and descriptive models have been offered, emphasizing different aspects of clinician-patient interaction and decision-making.4 Most definitions and models can be variously interpreted when considered in relation to the complex realities of healthcare provision. Clinicians' understandings of shared decision-making can have important implications for clinical practice.5 They can diverge, for example, over questions of whether, when and how it is appropriate to recommend a particular treatment or challenge a patient's expressed preferences.
This paper considers the practical and ethical implications of, ‘narrow’ and ‘broader’ ways of thinking about shared decision-making. It illustrates how narrow understandings of shared decision-making, which focus on informing patients so they can choose between options, can make it hard for many patients to share meaningfully in decision-making that affects them. It then outlines how broader understandings, which allow for more clinician influence and extend the relevance of shared decision-making to diverse situations, can be justified in principle and appraised for appropriateness.
‘Nanny-state’ accusations can function as powerful rhetorical weapons against interventions intended to promote public health. Public health advocates often lack effective rebuttals to these criticisms. Nanny-state accusations are largely accusations of paternalism. They conjure up emotive concern about undue governmental interference undermining peoples' autonomy. But autonomy can be understood in various ways. We outline three main conceptions of autonomy, argue that these that can underpin three different conceptions of paternalism, and consider implications for responses to nanny-state accusations and the assessment of public health interventions.
Study design and methods
Detailed conceptual analysis.
Results
The conceptions of paternalism implicit in nanny-state accusations generally depend on libertarian conceptions of autonomy. These reflect unrealistic views of personal independence and do not discriminate sufficiently between trivial and important freedoms. Decisional conceptions of paternalism, like their underlying decisional conceptions of autonomy, have limited applicability in public health contexts. Relational conceptions of paternalism incorporate relational conceptions of autonomy, so recognize that personal autonomy depends on socially shaped skills, self-identities and self-evaluations as well as externally structured opportunities. They encourage attention to the various ways that social interactions and relationships, including disrespect, stigmatization and oppression, can undermine potential for autonomy. While nanny-state accusations target any interference with negative freedom, however trivial, relational conceptions direct concerns to those infringements of negative freedom, or absences of positive freedom, serious enough to undermine self-determination, self-governance and/or self-authorization.
Conclusion
Relational conceptions of autonomy and paternalism offer public health policymakers and practitioners a means for rebutting nanny-state accusations, and can support more nuanced and more appropriately demanding appraisals of public health interventions.
Design: A grounded theory study.
Setting: Primary care practices in Australia and the UK.
Participants: 69 GPs in Australia (n=40) and the UK (n=29). We included GPs of varying ages, sex, clinical experience and patient populations. All GPs interested in participating in the study were included.
Results: GPs' accounts revealed fundamental differences in whether and how prostate cancer screening occurred in their practice and in the broader context within which they operate. The history of prostate screening policy, organisational structures and funding models appeared to drive more prostate screening in Australia and less in the UK. In Australia, screening processes and decisions were mostly at the discretion of individual clinicians, and varied considerably, whereas the accounts of UK GPs clearly reflected a consistent, organisationally embedded approach based on local evidence-based recommendations to discourage screening.
Conclusions: The GP accounts suggested that healthcare systems, including historical and current organisational and funding structures and rules, collectively contribute to how and why clinicians use the PSA test and play a significant role in creating the mindlines that GPs employ in their clinic. Australia's recently released consensus guidelines may support more streamlined and consistent care. However, if GP mindlines and thus routine practice in Australia are to shift, to ultimately reduce unnecessary or harmful prostate screening, it is likely that other important drivers at all levels of the screening process will need to be addressed.
Prostate-specific antigen (PSA) testing for prostate cancer is controversial. There are unresolved tensions and disagreements amongst experts, and clinical guidelines conflict. This both reflects and generates significant uncertainty about the appropriateness of screening. Little is known about general practitioners’ (GPs’) perspectives and experiences in relation to PSA testing of asymptomatic men. In this paper we asked the following questions: (1) What are the primary sources of uncertainty as described by GPs in the context of PSA testing? (2) How do GPs experience and respond to different sources of uncertainty?
Methods
This was a qualitative study that explored general practitioners’ current approaches to, and reasoning about, PSA testing of asymptomatic men. We draw on accounts generated from interviews with 69 general practitioners located in Australia (n = 40) and the United Kingdom (n = 29). The interviews were conducted in 2013–2014. Data were analysed using grounded theory methods. Uncertainty in PSA testing was identified as a core issue.
Findings
Australian GPs reported experiencing substantially more uncertainty than UK GPs. This seemed partly explainable by notable differences in conditions of practice between the two countries. Using Han et al’s taxonomy of uncertainty as an initial framework, we first outline the different sources of uncertainty GPs (mostly Australian) described encountering in relation to prostate cancer screening and what the uncertainty was about. We then suggest an extension to Han et al’s taxonomy based on our analysis of data relating to the varied ways that GPs manage uncertainties in the context of PSA testing. We outline three broad strategies: (1) taking charge of uncertainty; (2) engaging others in managing uncertainty; and (3) transferring the responsibility for reducing or managing some uncertainties to other parties.
Conclusion
Our analysis suggests some GPs experienced uncertainties associated with ambiguous guidance and the complexities of their situation as professionals with responsibilities to patients as considerably burdensome. This raises important questions about responsibility for uncertainty. In Australia in particular they feel insufficiently supported by the health care system to practice in ways that are recognisably consistent with ‘evidence based’ professional standards and appropriate for patients. More work is needed to clarify under what circumstances and how uncertainty should be communicated. Closer attention to different types and aspects of the uncertainty construct could be useful.