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1.
Sociol Health Illn ; 45(4): 734-753, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36707128

RESUMO

The 'improvement' of health care is now established and growing as a field of research and practice. This article, based on qualitative data from interviews with 21 senior leaders in this field, analyses the growth of improvement expertise as not simply an expansion but also a multiplication of 'ways of knowing'. It illustrates how health-care improvement is an area where contests about relevant kinds of knowledge, approaches and purposes proliferate and intersect. One dimension of this story relates to the increasing relevance of sociological expertise-both as a disciplinary contributor to this arena of research and practice and as a spur to reflexive critique. The analysis highlights the threat of persistent hierarchies within improvement expertise reproducing and amplifying restricted conceptions of both improvement and 'better' health care.


Assuntos
Atenção à Saúde , Sociologia , Humanos
2.
J Med Philos ; 48(1): 33-49, 2023 02 17.
Artigo em Inglês | MEDLINE | ID: mdl-36592336

RESUMO

Patient safety is a central aspect of healthcare quality, focusing on preventable, iatrogenic harm. Harm, in this context, is typically assumed to mean physical injury to patients, often caused by technical error. However, some contributions to the patient safety literature have argued that disrespectful behavior towards patients can cause harm, even when it does not lead to physical injury. This paper investigates the nature of such dignitary harms and explores whether they should be included within the scope of patient safety as a field of practice. We argue that dignitary harms in health care are-at least sometimes-preventable, iatrogenic harms. While we caution against including dignitary harms within the scope of patient safety just because they are relevantly similar to other iatrogenic harms, we suggest that thinking about dignitary harms can help to elucidate the value of patient safety, and to illuminate the evolving relationship between safety and quality.


Assuntos
Segurança do Paciente , Qualidade da Assistência à Saúde , Humanos , Doença Iatrogênica/prevenção & controle
3.
Med Humanit ; 48(1): 85-93, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34035179

RESUMO

In this paper, we consider the role of conversations in contributing to healthcare quality improvement. More specifically, we suggest that conversations can be important in responding to what we call 'normative complexity'. As well as reflecting on the value of conversations, the aim is to introduce the dimension of normative complexity as something that requires theoretical and practical attention alongside the more recognised challenges of complex systems, which we label, for short, as 'explanatory complexity'. In brief, normative complexity relates to the inherent difficulty of deciding what kinds of changes are 'improvements' or, more broadly, what is valuable in healthcare. We suggest that explanatory and normative complexity intersect and that anyone interested in healthcare improvement needs to be sensitive to both. After briefly introducing the idea of normative complexity, we consider some contrasting examples of conversations, reflecting on how they do and might contribute to healthcare quality. We discuss both conversations that are deliberately organised and facilitated ('orchestrated conversations') and more informally occurring and routine conversations. In the first half of the paper, we draw on some examples of orchestrated and routine conversations to open up these issues. In the second half of the paper, we bring some more theoretical lenses to bear on both conversations and normative complexity, summarise what we take to be the value of conversations and draw together some of the implications of our discussion. In summary, we argue that conversations can play a crucial role in negotiating the normative complexity of healthcare quality improvement because of their capacity to hold together a plurality of perspectives, to contribute and respond to emergence and to help underpin institutional conditions for empathy and imagination.


Assuntos
Comunicação , Atenção à Saúde , Instalações de Saúde , Humanos , Melhoria de Qualidade
4.
J Med Ethics ; 47(1): 47-50, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-31911500

RESUMO

Therapeutic privilege (TP) is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients' needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal.


Assuntos
Consentimento Livre e Esclarecido , Médicos , Tomada de Decisões , Humanos , Singapura
5.
BMC Med Ethics ; 22(1): 91, 2021 07 13.
Artigo em Inglês | MEDLINE | ID: mdl-34256744

RESUMO

BACKGROUND: Poverty and social deprivation have adverse effects on health outcomes and place a significant burden on healthcare systems. There are some actions that can be taken to tackle them from within healthcare institutions, but clinicians who seek to make frontline services more responsive to the social determinants of health and the social context of people's lives can face a range of ethical challenges. We summarise and consider a case in which clinicians introduced a poverty screening initiative (PSI) into paediatric practice using the discourse and methodology of healthcare quality improvement (QI). DISCUSSION: Whilst suggesting that interventions like the PSI are a potentially valuable extension of clinical roles, which take advantage of the unique affordances of clinical settings, we argue that there is a tendency for such settings to continuously reproduce a narrower set of norms. We illustrate how the framing of an initiative as QI can help legitimate and secure funding for practical efforts to help address social ends from within clinical service, but also how it can constrain and disguise the value of this work. A combination of methodological emphases within QI and managerialism within healthcare institutions leads to the prioritisation, often implicitly, of a limited set of aims and governing values for healthcare. This can act as an obstacle to a genuine broadening of the clinical agenda, reinforcing norms of clinical practice that effectively push poverty 'off limits.' We set out the ethical dilemmas facing clinicians who seek to navigate this landscape in order to address poverty and the social determinants of health. CONCLUSIONS: We suggest that reclaiming QI as a more deliberative tool that is sensitive to these ethical dilemmas can enable managers, clinicians and patients to pursue health-related values and ends, broadly conceived, as part of an expansive range of social and personal goods.


Assuntos
Pobreza , Melhoria de Qualidade , Criança , Atenção à Saúde , Instalações de Saúde , Humanos , Qualidade da Assistência à Saúde
6.
Health Care Anal ; 29(1): 39-58, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33341924

RESUMO

This paper analyses the ethics of routine measurement for healthcare improvement. Routine measurement is an increasingly central part of healthcare system design and is taken to be necessary for successful healthcare improvement efforts. It is widely recognised that the effectiveness of routine measurement in bringing about improvement is limited-it often produces only modest effects or fails to generate anticipated improvements at all. We seek to show that these concerns do not exhaust the ethics of routine measurement. Even if routine measurement does lead to healthcare improvements, it has associated ethical costs which are not necessarily justified by its benefits. We argue that the practice of routine measurement changes the function of the healthcare system, resulting in an unintended and ethically significant transformation of the sector. It is difficult to determine whether such changes are justified or offset by the benefits of routine measurement because there may be no shared understanding of what is 'good' in healthcare by which to compare the benefits of routine measurement with the goods that are precluded by it. We counsel that the practice of routine measurement should proceed with caution and should be recognised to be an ethically significant choice, rather than an inevitability.


Assuntos
Atenção à Saúde , Melhoria de Qualidade/ética , Humanos , Indicadores de Qualidade em Assistência à Saúde
7.
J Med Ethics ; 46(2): 118-122, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31732680

RESUMO

In this paper, we argue that there are important ethical questions about healthcare improvement which are underexplored. We start by drawing on two existing literatures: first, the prevailing, primarily governance-oriented, application of ethics to healthcare 'quality improvement' (QI), and second, the application of QI to healthcare ethics. We show that these are insufficient for ethical analysis of healthcare improvement. In pursuit of a broader agenda for an ethics of healthcare improvement, we note that QI and ethics can, in some respects, be treated as closely related concerns and not simply as externally related agendas. To support our argument, we explore the gap between 'quality' and 'ethics' discourses and ask about the possible differences between 'good quality healthcare' and 'good healthcare'. We suggest that the word 'quality' both adds to and subtracts from the idea of 'good healthcare', and in particular that the technicist inflection of quality discourses needs to be set in the context of broader conceptualisations of healthcare improvement. We introduce the distinction between quality as a measurable property and quality as an evaluative judgement, suggesting that a core, but neglected, question for an ethics of healthcare improvement is striking the balance between these two conceptions of quality.


Assuntos
Atenção à Saúde/ética , Análise Ética , Melhoria de Qualidade/ética , Qualidade da Assistência à Saúde/ética , Formação de Conceito , Atenção à Saúde/normas , Humanos
8.
J Med Ethics ; 46(10): 641-645, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32571847

RESUMO

Throughout March and April 2020, debate raged about how best to allocate limited intensive care unit (ICU) resources in the face of a growing COVID-19 pandemic. The debate was dominated by utility-based arguments for saving the most lives or life-years. These arguments were tempered by equity-based concerns that triage based solely on prognosis would exacerbate existing health inequities, leaving disadvantaged patients worse off. Central to this debate was the assumption that ICU admission is a valuable but scarce resource in the pandemic context.In this paper, we argue that the concern about achieving equity in ICU triage is problematic for two reasons. First, ICU can be futile and prolong or exacerbate suffering rather than ameliorate it. This may be especially true in patients with COVID-19 with emerging data showing that most who receive access to a ventilator will still die. There is no value in admitting patients with poor prognostic indicators to ICU to meet an equity target when intensive critical care is contrary to their best interests. Second, the focus on ICU admission shifts focus away from important aspects of COVID-19 care where there is greater opportunity for mitigating suffering and enhancing equitable care.We propose that the focus on equity concerns during the pandemic should broaden to include providing all people who need it with access to the highest possible standard of end-of-life care. This requires attention to culturally safe care in the following interlinked areas: palliative care, communication and decision support and advanced care planning.


Assuntos
Infecções por Coronavirus/epidemiologia , Alocação de Recursos para a Atenção à Saúde/ética , Unidades de Terapia Intensiva , Seleção de Pacientes , Pneumonia Viral/epidemiologia , Triagem/ética , Betacoronavirus , COVID-19 , Humanos , Pandemias , SARS-CoV-2
9.
BMC Fam Pract ; 21(1): 114, 2020 06 19.
Artigo em Inglês | MEDLINE | ID: mdl-32560689

RESUMO

BACKGROUND: Personalised care and support planning (CSP) has been shown to improve diabetes outcomes, patient experience and provider morale in the care of persons living with diabetes. However, this has not been confirmed in controlled studies. Patient Activation through Community Empowerment/Engagement for Diabetes Management (PACE-D) is a pragmatic controlled trial that evaluates the effectiveness of personalised CSP in persons living with diabetes in the public primary care setting in Singapore. METHODS: Teamlet-empanelled patients with diabetes at four polyclinics are recruited for this study. Participants who attend either of the two Intervention clinics are sent their investigation results in a care planning letter (CPL) to prepare them for the CSP conversation. This conversation is facilitated by a trained CSP practitioner who engages them in discussion of concerns, goals and action plans, and documents their plans for subsequent review. Participants in the two Control clinics will receive standard diabetes care. Participants will complete two or more CSP conversations (Intervention) or regular consultations (Control) at the annual review visits within the 18 months of the study. The sample size is calculated at 1620 participants, with glycated haemoglobin (HbA1c) as the primary outcome measure. Secondary outcome measures include patient activation (as measured by PAM-13) and changes in healthcare utilisation and cost. DISCUSSION: This study is a pragmatic trial that evaluates the effectiveness of personalised CSP in persons living with diabetes in a real world setting. It promises to provide insights with regard to the implementation of this model of care in Singapore and the region. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT04288362. Retrospectively registered on 28 February 2020.


Assuntos
Diabetes Mellitus Tipo 2 , Navegação de Pacientes/métodos , Participação do Paciente , Assistência Centrada no Paciente , Serviços de Saúde Comunitária , Diabetes Mellitus Tipo 2/psicologia , Diabetes Mellitus Tipo 2/terapia , Humanos , Modelos Organizacionais , Participação do Paciente/métodos , Participação do Paciente/psicologia , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/organização & administração , Ensaios Clínicos Pragmáticos como Assunto , Atenção Primária à Saúde , Singapura
10.
Health Care Anal ; 27(4): 231-248, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31055702

RESUMO

Many healthcare practices expose people to risks of harmful outcomes. However, the major theories of moral philosophy struggle to assess whether, when and why it is ethically justifiable to expose individuals to risks, as opposed to actually harming them. Sven Ove Hansson has proposed an approach to the ethical assessment of risk imposition that encourages attention to factors including questions of justice in the distribution of advantage and risk, people's acceptance or otherwise of risks, and the scope individuals have to influence the practices that generate risk. This paper investigates the ethical justifiability of preventive healthcare practices that expose people to risks including overdiagnosis. We applied Hansson's framework to three such practices: an 'ideal' breast screening service, a commercial personal genome testing service, and a guideline that lowers the diagnostic threshold for hypertension. The framework was challenging to apply, not least because healthcare has unclear boundaries and involves highly complex practices. Nonetheless, the framework encouraged attention to issues that would be widely recognised as morally pertinent. Our assessment supports the view that at least some preventive healthcare practices that impose risks including that of overdiagnosis are not ethically justifiable. Further work is however needed to develop and/or test refined assessment criteria and guidance for applying them.


Assuntos
Ética , Uso Excessivo dos Serviços de Saúde , Risco , Tomada de Decisão Clínica/ética , Humanos , Medicina Preventiva
11.
Fam Pract ; 35(1): 13-21, 2018 01 16.
Artigo em Inglês | MEDLINE | ID: mdl-28985368

RESUMO

Background: Policy encourages health care providers to listen and respond to feedback from patients, expecting that it will enhance care experiences. Enhancement of patients' experiences may not yet be a reality, particularly in primary health care settings. Objective: To identify the issues that influence the use and impact of feedback in this context. Design and Setting: A realist synthesis of studies of the use of patient feedback within primary health care settings. Methods: Structured review of published studies between 1971 and January 2015. Results: Eighteen studies were reported in 20 papers. Eleven studies reported patient survey scores as a primary outcome. There is little evidence that formal patient feedback led to enhanced experiences. The likelihood of patient feedback to health care staff stimulating improvements in future patients' experiences appears to be influenced predominantly by staff perceptions of the purpose of such feedback; the validity and type of data that is collected; and where, when and how it is presented to primary health care teams or practitioners and teams' capacity to change. Conclusions: There is limited research into how patient feedback has been used in primary health care practices or its usefulness as a stimulant to improve health care experience. Using a realist synthesis approach, we have identified a number of contextual and intervention-related factors that appear to influence the likelihood that practitioners will listen to, act on and achieve improvements in patient experience. Consideration of these may support research and improvement work in this area.


Assuntos
Retroalimentação , Medicina Geral , Satisfação do Paciente , Gestão da Qualidade Total/métodos , Competência Clínica/normas , Humanos , Melhoria de Qualidade/organização & administração
12.
Health Care Anal ; 26(1): 48-65, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-27896539

RESUMO

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 accommodate the range of what matters to people (both generally and more specifically) for living well, 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.


Assuntos
Doença Crônica/psicologia , Gerenciamento Clínico , Assistência Centrada no Paciente/métodos , Relações Profissional-Paciente , Autocuidado , Apoio Social , Humanos , Qualidade de Vida
13.
BMC Cancer ; 17(1): 348, 2017 05 19.
Artigo em Inglês | MEDLINE | ID: mdl-28526000

RESUMO

BACKGROUND: Continued smoking after cancer adversely affects quality of life and survival, but one fifth of cancer survivors still smoke. Despite its demands, cancer presents an opportunity for positive behaviour change. Smoking often occurs in social groups, therefore interventions which target families and individuals may be more successful. This qualitative study explored patients, family members and health professionals' views and experiences of smoking and smoking cessation after cancer, in order to inform future interventions. METHODS: In-depth qualitative interviews (n = 67) with 29 patients, 14 family members and 24 health professionals. Data were analysed using the 'Framework' method. RESULTS: Few patients and family members had used National Health Service (NHS) smoking cessation services and more than half still smoked. Most recalled little 'smoking-related' discussion with clinicians but were receptive to talking openly. Clinicians revealed several barriers to discussion. Participants' continued smoking was explained by the stress of diagnosis; desire to maintain personal control; and lack of connection between smoking, cancer and health. CONCLUSIONS: A range of barriers to smoking cessation exist for patients and family members. These are insufficiently assessed and considered by clinicians. Interventions must be more effectively integrated into routine practice.


Assuntos
Neoplasias/epidemiologia , Abandono do Hábito de Fumar/psicologia , Fumar/efeitos adversos , Adulto , Idoso , Idoso de 80 Anos ou mais , Família/psicologia , Feminino , Pessoal de Saúde/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/patologia , Neoplasias/psicologia , Qualidade de Vida , Fumar/epidemiologia , Apoio Social
14.
Health Expect ; 20(2): 243-259, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27075246

RESUMO

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.


Assuntos
Doença Crônica/terapia , Participação do Paciente , Autogestão , Apoio Social , Humanos
15.
Bioethics ; 31(8): 590-598, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28901600

RESUMO

Current practices of identifying and treating small indolent thyroid cancers constitute an important but in some ways unusual form of overdiagnosis. Overdiagnosis refers to diagnoses that generally harm rather than benefit patients, primarily because the diagnosed condition is not a harmful form of disease. Patients who are overdiagnosed with thyroid cancer are harmed by the psycho-social impact of a cancer diagnosis, as well as treatment interventions such partial or total thyroidectomy, lifelong thyroid replacement hormone, monitoring, surgical complications and other side effects. These harms seem to outweigh any putative benefit of knowing about a cancer that would not have caused problems if left undiscovered. In addition to harms to patients, thyroid cancer overdiagnosis leads to significant opportunity costs at a societal level, due to costs of diagnosis and treatment. Unlike many other overdiagnosed cancers, accurate risk stratification is possible with thyroid cancer. At the individual patient level, use of this risk information might support informed choice and/or shared decision-making, as mandated by clinical ethics frameworks. And this approach might, to some extent, help to reduce rates of diagnosis and intervention. In practice, however, it is unlikely to stem the rising incidence and associated harms and costs of overdiagnosed thyroid cancer, especially in situations where health professionals have conflicts of interest. We argue in this article that thyroid cancer overdiagnosis may be usefully understood as a public health problem, and that some public health approaches will be readily justifiable and are more likely to be effective in minimising its harms.


Assuntos
Detecção Precoce de Câncer/estatística & dados numéricos , Programas de Rastreamento/ética , Uso Excessivo dos Serviços de Saúde , Neoplasias da Glândula Tireoide/diagnóstico , Procedimentos Desnecessários , Humanos , Saúde Pública , Risco
16.
BMC Fam Pract ; 18(1): 39, 2017 Mar 20.
Artigo em Inglês | MEDLINE | ID: mdl-28320325

RESUMO

BACKGROUND: Support for self-management (SSM) is a prominent strand of health policy internationally, particularly for primary care. It is often discussed and evaluated in terms of patients' knowledge, skills and confidence, health-related behaviours, disease control or risk reduction, and service use and costs. However, these goals are limited, both as guides to professional practice and as indicators of its quality. In order to better understand what it means to support self-management well, we examined health professionals' views of success in their work with people with long-term conditions. This study formed part of a broader project to develop a conceptual account of SSM that can reflect and promote good practice. METHODS: Semi-structured individual interviews (n = 26) and subsequent group discussions (n = 5 groups, 30 participants) with diverse health professionals working with people with diabetes and/or Parkinson's disease in NHS services in London, northern England or Scotland. The interviews explored examples of more and less successful work, ways of defining success, and ideas about what facilitates success in practice. Subsequent group discussions considered the practical implications of different accounts of SSM. Interviews and group discussions were audio-recorded, transcribed and analysed thematically. RESULTS: Participants identified a wide range of interlinked aspects or elements of success relating to: health, wellbeing and quality of life; how well people (can) manage; and professional-patient relationships. They also mentioned a number of considerations that have important implications for assessing the quality of their own performance. These considerations in part reflect variations in what matters and what is realistically achievable for particular people, in particular situations and at particular times, as well as the complexity of questions of attribution. CONCLUSIONS: A nuanced assessment of the quality of support for self-management requires attention to the responsiveness of professional practice to a wide, complex range of personal and situational states, as well as actions and interactions over time. A narrow focus on particular indicators can lead to insensitive or even perverse judgements and perhaps counterproductive effects. More open, critical discussions about both success and the assessment of quality are needed to facilitate good professional practice and service improvement initiatives.


Assuntos
Atenção à Saúde/normas , Política de Saúde , Avaliação de Resultados em Cuidados de Saúde/métodos , Atenção Primária à Saúde/normas , Pesquisa Qualitativa , Qualidade de Vida , Autocuidado/normas , Inglaterra , Humanos , Relações Profissional-Paciente , Escócia
17.
Health Care Anal ; 25(4): 386-403, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-27277736

RESUMO

Patient or public involvement (PPI) in health research is increasingly expected as a matter of policy. In theory, PPI can contribute both to the epistemic aims intrinsic to research (generating knowledge), and to extrinsically valued features of research such as social inclusion and transparency. In practice, the aims of PPI have not always been clear, although there has been a tendency to encourage the involvement of so-called ordinary people who are regarded as representative of an assumed patient perspective. In this paper we focus on the epistemic potential of PPI, using theoretical work in epistemology to develop a nuanced account of patients' experiential knowledge and how this might contribute directly to conceptual development, hypothesis generation and data interpretation. We also consider how some features of health research pose barriers to this kind of epistemic contribution. Drawing on Miranda Fricker's idea of testimonial injustice, we explore how disciplinary indicators of credibility in clinical and academic health research contexts might be wrongly applied to those involved in PPI, undermining their potential to contribute. Finally we argue for a range of strategies to maximize opportunities for patients to engage with research teams and make epistemologically significant contributions to research.


Assuntos
Participação da Comunidade/métodos , Conhecimento , Pesquisa/organização & administração , Ética em Pesquisa , Humanos
18.
Health Expect ; 19(5): 1160-8, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-26364752

RESUMO

OBJECTIVE: To test the feasibility and assess the uptake and acceptability of implementing a consumer questions programme, AskShareKnow, to encourage consumers to use the questions '1. What are my options; 2. What are the possible benefits and harms of those options; 3. How likely are each of those benefits and harms to happen to me?' These three questions have previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement. METHODS: This single-arm intervention study invited participants attending a reproductive and sexual health-care clinic to view a 4-min video-clip in the waiting room. Participants completed three questionnaires: (T1) prior to viewing the intervention; (T2) immediately after their consultation; and (T3) two weeks later. RESULTS: A total of 121 (78%) participants viewed the video-clip before their consultation. Eighty-four (69%) participants asked one or more questions, and 35 (29%) participants asked all three questions. For those making a decision, 55 (87%) participants asked one or more questions, while 27 (43%) participants asked all three questions. Eighty-seven (72%) participants recommended the questions. After two weeks, 47 (49%) of the participants recalled the questions. CONCLUSIONS: Enabling patients to view a short video-clip before an appointment to improve information and involvement in health-care consultations is feasible and led to a high uptake of question asking in consultations. PRACTICE IMPLICATIONS: This AskShareKnow programme is a simple and feasible method of training patients to use a brief consumer-targeted intervention that has previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement and use of evidence-based questions.


Assuntos
Comunicação , Tomada de Decisões , Relações Médico-Paciente , Atenção Primária à Saúde , Saúde Reprodutiva , Adulto , Estudos de Viabilidade , Feminino , Humanos , Pessoa de Meia-Idade , Participação do Paciente , Inquéritos e Questionários , Gravação em Vídeo
19.
Cochrane Database Syst Rev ; (3): CD010523, 2015 Mar 03.
Artigo em Inglês | MEDLINE | ID: mdl-25733495

RESUMO

BACKGROUND: Personalised care planning is a collaborative process used in chronic condition management in which patients and clinicians identify and discuss problems caused by or related to the patient's condition, and develop a plan for tackling these. In essence it is a conversation, or series of conversations, in which they jointly agree goals and actions for managing the patient's condition. OBJECTIVES: To assess the effects of personalised care planning for adults with long-term health conditions compared to usual care (i.e. forms of care in which active involvement of patients in treatment and management decisions is not explicitly attempted or achieved). SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, PsycINFO, ProQuest, clinicaltrials.gov and WHO International Clinical Trials Registry Platform to July 2013. SELECTION CRITERIA: We included randomised controlled trials and cluster-randomised trials involving adults with long-term conditions where the intervention included collaborative (between individual patients and clinicians) goal setting and action planning. We excluded studies where there was little or no opportunity for the patient to have meaningful influence on goal selection, choice of treatment or support package, or both. DATA COLLECTION AND ANALYSIS: Two of three review authors independently screened citations for inclusion, extracted data, and assessed risk of bias. The primary outcomes were effects on physical health, psychological health, subjective health status, and capabilities for self management. Secondary outcomes included effects on health-related behaviours, resource use and costs, and type of intervention. A patient advisory group of people with experience of living with long-term conditions advised on various aspects of the review, including the protocol, selection of outcome measures and emerging findings. MAIN RESULTS: We included 19 studies involving a total of 10,856 participants. Twelve of these studies focused on diabetes, three on mental health, one on heart failure, one on end-stage renal disease, one on asthma, and one on various chronic conditions. All 19 studies included components that were intended to support behaviour change among patients, involving either face-to-face or telephone support. All but three of the personalised care planning interventions took place in primary care or community settings; the remaining three were located in hospital clinics. There was some concern about risk of bias for each of the included studies in respect of one or more criteria, usually due to inadequate or unclear descriptions of research methods. Physical healthNine studies measured glycated haemoglobin (HbA1c), giving a combined mean difference (MD) between intervention and control of -0.24% (95% confidence interval (CI) -0.35 to -0.14), a small positive effect in favour of personalised care planning compared to usual care (moderate quality evidence).Six studies measured systolic blood pressure, a combined mean difference of -2.64 mm/Hg (95% CI -4.47 to -0.82) favouring personalised care (moderate quality evidence). The pooled results from four studies showed no significant effect on diastolic blood pressure, MD -0.71 mm/Hg (95% CI -2.26 to 0.84).We found no evidence of an effect on cholesterol (LDL-C), standardised mean difference (SMD) 0.01 (95% CI -0.09 to 0.11) (five studies) or body mass index, MD -0.11 (95% CI -0.35 to 0.13) (four studies).A single study of people with asthma reported that personalised care planning led to improvements in lung function and asthma control. Psychological healthSix studies measured depression. We were able to pool results from five of these, giving an SMD of -0.36 (95% CI -0.52 to -0.20), a small effect in favour of personalised care (moderate quality evidence). The remaining study found greater improvement in the control group than the intervention group.Four other studies used a variety of psychological measures that were conceptually different so could not be pooled. Of these, three found greater improvement for the personalised care group than the usual care group and one was too small to detect differences in outcomes. Subjective health statusTen studies used various patient-reported measures of health status (or health-related quality of life), including both generic health status measures and condition-specific ones. We were able to pool data from three studies that used the SF-36 or SF-12, but found no effect on the physical component summary score SMD 0.16 (95% CI -0.05 to 0.38) or the mental component summary score SMD 0.07 (95% CI -0.15 to 0.28) (moderate quality evidence). Of the three other studies that measured generic health status, two found improvements related to personalised care and one did not.Four studies measured condition-specific health status. The combined results showed no difference between the intervention and control groups, SMD -0.01 (95% CI -0.11 to 0.10) (moderate quality evidence). Self-management capabilitiesNine studies looked at the effect of personalised care on self-management capabilities using a variety of outcome measures, but they focused primarily on self efficacy. We were able to pool results from five studies that measured self efficacy, giving a small positive result in favour of personalised care planning: SMD 0.25 (95% CI 0.07 to 0.43) (moderate quality evidence).A further five studies measured other attributes that contribute to self-management capabilities. The results from these were mixed: two studies found evidence of an effect on patient activation, one found an effect on empowerment, and one found improvements in perceived interpersonal support. Other outcomesPooled data from five studies on exercise levels showed no effect due to personalised care planning, but there was a positive effect on people's self-reported ability to carry out self-care activities: SMD 0.35 (95% CI 0.17 to 0.52).We found no evidence of adverse effects due to personalised care planning.The effects of personalised care planning were greater when more stages of the care planning cycle were completed, when contacts between patients and health professionals were more frequent, and when the patient's usual clinician was involved in the process. AUTHORS' CONCLUSIONS: Personalised care planning leads to improvements in certain indicators of physical and psychological health status, and people's capability to self-manage their condition when compared to usual care. The effects are not large, but they appear greater when the intervention is more comprehensive, more intensive, and better integrated into routine care.


Assuntos
Doença Crônica/terapia , Planejamento de Assistência ao Paciente , Adulto , Asma/terapia , Diabetes Mellitus/sangue , Diabetes Mellitus/terapia , Hemoglobinas Glicadas/análise , Nível de Saúde , Insuficiência Cardíaca/terapia , Humanos , Falência Renal Crônica/terapia , Transtornos Mentais/terapia , Participação do Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto , Autocuidado
20.
Birth ; 41(3): 283-9, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24750377

RESUMO

BACKGROUND: Birth plans are written preferences for labor and birth which women prepare in advance. Most studies have examined them as a novel intervention or "outside" formal care provision. This study considered use of a standard birth plan section within a national, woman-held maternity record. METHODS: Exploratory qualitative interviews were conducted with women (42) and maternity service staff (24) in northeast Scotland. Data were analyzed thematically. RESULTS: Staff and women were generally positive about the provision of the birth plan section within the record. Perceived benefits included the opportunity to highlight preferences, enhance communication, stimulate discussions, and address anxieties. However, not all women experienced these benefits or understood the birth plan's purpose. Some were unaware of the opportunity to complete it or could not access the support they needed from staff to discuss or be confident about their options. Some were reluctant to plan too much. Staff recognized the need to support women with birth plan completion but noted practical challenges to this. CONCLUSIONS: A supportive antenatal opportunity to allow discussion of options may be needed to realize the potential benefits of routine inclusion of birth plans in maternity notes.


Assuntos
Parto Obstétrico/métodos , Serviços de Saúde Materna/tendências , Preferência do Paciente , Pesquisa Qualitativa , Adulto , Comunicação , Tomada de Decisões , Feminino , Humanos , Entrevistas como Assunto , Trabalho de Parto , Estudos Longitudinais , Participação do Paciente , Gravidez , Cuidado Pré-Natal , Escócia , Adulto Jovem
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