Evidence-based medicine (EBM) has stimulated a proliferation of clinical guidelines and prescribing protocols which aim to increase quality and improve equity of healthcare through the standardisation of treatment and access to resources.... more
Evidence-based medicine (EBM) has stimulated a proliferation of clinical guidelines and prescribing protocols which aim to increase quality and improve equity of healthcare through the standardisation of treatment and access to resources. The containment of rising prescribing costs is a major concern of European healthcare systems, which has led to a more overt rationing of resources. However, prescribing guidelines and cost-containment strategies reduce the capacity of health professionals to involve patients in discussion and choice of treatment and consequently work against the objectives of patient-centred medicine (PCM), which are a priority of current UK healthcare policy. Little is known about the impact of prescribing guidelines or cost-containment strategies on the practice of medicine in the primary care sector, their effect on relations between doctors and patients, and the ways in which laymen and professionals evaluate and respond to strategies for more 'rational' prescribing. This paper considers the responses of general practitioners (GPs) in the UK to the conflicting commitments of meeting the clinical needs of individual patients and dealing with the situational constraints of the consultation, while also achieving a reduction in prescribing rates (and costs) of proton pump inhibitors (PPIs) in the treatment of gastric disorders. Qualitative interview-based research involving 26 GPs. Most doctors considered that they were making an effort to achieve a reduction in PPI prescribing, and none regarded his current prescribing of PPIs to be inappropriate. However, the raised prescribing thresholds for PPIs, which were a consequence of applying a cost-containment policy, conflicted with the GPs' stated commitment to provide the best and most appropriate treatment for individual patients. In addition, the aim to reduce PPI prescribing was often subverted by the situational constraints of the consultation, and doctors' desire to protect their relationship with patients. An outcome of the conflicting pressures to which the doctors were subject in their efforts to meet clinical need while also reducing the cost of PPIs was the reinforcement of widespread assumptions and negative patient stereotypes relating to a 'mythology' of PPI prescribing. The prevalence of such stereotypes inhibits the reflexivity in medical practice, which is required for doctors to perceive and respond more constructively to patient perspectives of illness and treatment. Such typifications also function to justify the rationing of treatment on the basis of inappropriate judgements about the deservingness or moral worth of patients. The study illustrates the adverse impact on medical practice of GPs' responses to the competing pressures of meeting patient needs while complying with prescribing incentives and guidelines. It highlights the incompatibility of different policies relating to cost containment and patient-centred medicine and may help to explain the systematic inertia which appears to have hindered the development of genuinely patient-centred medicine over the last few decades.
ABSTRACT Background: Inadequacy of information and consequent exclusion from discussion and decisions about treatment are enduring complaints of users of mental health services. Aims: To investigate ongoing patient concerns about the... more
ABSTRACT Background: Inadequacy of information and consequent exclusion from discussion and decisions about treatment are enduring complaints of users of mental health services. Aims: To investigate ongoing patient concerns about the provision of medication information on acute psychiatric wards and involve a wide range of stakeholders in the formulation of ways of improving the quality and accessibility of patient information materials. Method: Focus group study of patients, carers and health professionals. Results: Lay and professional focus groups agreed that current provision of written and verbal information was inadequate and should be improved. Patients and relatives accorded this a higher priority than most professionals. Staff were often ambivalent about patients having access to information, tending to emphasize the potentially negative consequences they anticipated this could have on compliance. The study identified features of professional hierarchy and organizational complexity that further restricted patients' access to information from staff. Conclusion: A greater professional awareness of patients' understanding and experience of their illness and concerns about treatment and an understanding of how these relate to patients' wider goals and problems of living is necessary for improving treatment information for patients and to promote a change in the professional culture required for the development of a more patient centred medical practice. Declaration of interest: KP and JG were supported by the Concordance Research Fellowship which is funded by the Department of Health as part of its policy research programme and administered by the Royal Pharmaceutical Society of Great Britain. Conflicting interests: none.
The quality of patient information leaflets has been criticised for being too medico centred. Written information produced by a patient organisation should be tailored to members' expressed needs, and based on their experience and... more
The quality of patient information leaflets has been criticised for being too medico centred. Written information produced by a patient organisation should be tailored to members' expressed needs, and based on their experience and therefore useful in helping patients to self-manage their condition. Views expressed in semi-structured interviews with 30 members of a self help group for depression were compared with the content of an antidepressant leaflet produced by the parent organisation. The information leaflet used six frequently asked questions to deliver a biomedical discourse on antidepressants. Members of the group had questions not included in the leaflet around self help, stigma and sense of self, and more complex answers to the six questions. It cannot be assumed that information leaflets written by lay led organisations are patient centred and promote self help. To assist in facilitating concordance between patient and prescriber medicine information leaflets should draw on patient experience of the condition and treatment for it.
treatment. Uncertainty about the usefulness of antide- pressants prompted some patients to test their efficacy by stopping their tablets. Others were afraid to stop even after finishing the course of treatment in case their symptoms... more
treatment. Uncertainty about the usefulness of antide- pressants prompted some patients to test their efficacy by stopping their tablets. Others were afraid to stop even after finishing the course of treatment in case their symptoms returned. Psychological dependency became a concern for some patients. Although antidepressants could prove helpful in the short term many respondents were uneasy about taking them
Background: Inadequacy of information and consequent exclusion from discussion and decisions about treatment are enduring complaints of users of mental health services. Aims: To investigate ongoing patient concerns about the provision of... more
Background: Inadequacy of information and consequent exclusion from discussion and decisions about treatment are enduring complaints of users of mental health services. Aims: To investigate ongoing patient concerns about the provision of medication information on acute psychiatric wards and involve a wide range of stakeholders in the formulation of ways of improving the quality and accessibility of patient information materials. Method: Focus group study of patients, carers and health professionals. Results: Lay and professional focus groups agreed that current provision of written and verbal information was inadequate and should be improved. Patients and relatives accorded this a higher priority than most professionals. Staff were often ambivalent about patients having access to information, tending to emphasize the potentially negative consequences they anticipated this could have on compliance. The study identified features of professional hierarchy and organizational complexity that further restricted patients' access to information from staff. Conclusion: A greater professional awareness of patients' understanding and experience of their illness and concerns about treatment and an understanding of how these relate to patients' wider goals and problems of living is necessary for improving treatment information for patients and to promote a change in the professional culture required for the development of a more patient centred medical practice. Declaration of interest: KP and JG were supported by the Concordance Research Fellowship which is funded by the Department of Health as part of its policy research programme and administered by the Royal Pharmaceutical Society of Great Britain. Conflicting interests: none.
To compare the themes emerging from a stakeholder workshop on consumers’ medicines information with themes in relevant published reviews.A stakeholder workshop was held to permit consumer orientation of a systematic review of consumer... more
To compare the themes emerging from a stakeholder workshop on consumers’ medicines information with themes in relevant published reviews.A stakeholder workshop was held to permit consumer orientation of a systematic review of consumer medicines information. Analysis of the workshop outputs was compared to a content analysis of the identified published reviews.The workshop generated a range of responses inductively grouped into 12 over-arching themes. No reviews tackled all of these themes, nor addressed ‘informed choice and autonomy’. More recent reviews reflected more workshop themes than older ones, suggesting a temporal trend towards a greater sensitivity to consumer issues. The most common workshop themes were covered by all reviews. Six themes in the reviews were related to traditional professional concerns including compliance, which did not arise in the workshop.The results highlight a mismatch between the themes in previous published reviews and the themes emerging from the workshop. The most commonly reflected themes in reviews conform to the ‘patient education’ model of discourse, while workshop themes less often echoed in reviews reflect the discourse of ‘patient empowerment’.The findings suggest the importance of involving patients in the development of patient literature from the outset.
Objective To review research on the role and value of written medicines information for patients from the perspective of patients and health professionals.Context Providing written information to patients about their medicines is... more
Objective To review research on the role and value of written medicines information for patients from the perspective of patients and health professionals.Context Providing written information to patients about their medicines is acknowledged as a priority but there is poor understanding of how best to meet patients’ needs.Method A sensitive search strategy was developed to maximize the identification of relevant studies. We used a data extraction form designed to appraise qualitative research. Findings were synthesized into a narrative account.Main results There were three broad categories of study: those which related to policy initiatives; those where the aim was to increase compliance; and those concerned with using information to support decision-making (‘informed patient’ studies). While the policy initiative and compliance studies reported that, mostly, patients were positive about written information, the ‘informed patient’ studies showed a more complex picture. Patients valued medicines information tailored to their condition. They did not want it to be a substitute for spoken information from their doctor. Not everyone wanted written information but those who did wanted sufficient detail to meet their need. Need varied over time and between patients. The small number of studies relating to health professionals showed widespread ambivalence towards using written information. Some thought it should be brief and simple, only partially disclose side-effects and saw its main role as being to increase compliance.Conclusion The different perspectives of patients and health professionals, and the diverse and changing information needs of patients pose a challenge to providers of written medicines information.
Goals of work This paper presents findings from a qualitative study investigating service users’ experiences of a patient information pathway after a diagnosis of cancer. Materials and methods Patients (27) and relatives (20) were... more
Goals of work This paper presents findings from a qualitative study investigating service users’ experiences of a patient information pathway after a diagnosis of cancer. Materials and methods Patients (27) and relatives (20) were recruited from two identified Cancer Network sites representing a pathway that had been information mapped (Lung) and one which had not (Head and Neck). Respondents participated in up to three qualitative interviews in the year after diagnosis. Main results The need for information in response to serious health problems has become widely accepted. Providing cancer patients and their carers with high-quality information throughout their care pathway is a policy priority. However, the study findings contribute to a growing body of evidence that far from embracing the active role of “expert patient”, many patients continue to prefer verbal to written information, to trust in health professionals as their primary and preferred source of information, and to be quite cautious and selective about what they want to know about their illness. Conclusions Good information is regarded as a prerequisite for informed decision making and a primary means of coping with the stress of illness. However, patient attitudes to information are complex and encompass resistance, ambivalence and indifference, active engagement and interest. The study findings reinforce the need for health professionals to develop competence as skilled communicators, and for efficient local systems of information transfer between service agencies and health professionals as prerequisites for delivery of the timely, tailored and personalized information which patients require.
Advances in cancer care and treatment have created a new and somewhat anomalous category of patients with a diagnosis of non-curative disease who still have a considerable period of life remaining. During much of this time they may remain... more
Advances in cancer care and treatment have created a new and somewhat anomalous category of patients with a diagnosis of non-curative disease who still have a considerable period of life remaining. During much of this time they may remain relatively well, without manifest need for clinical care. The responses of patients to this challenging situation are largely unknown. However, it has been assumed that because they confront a difficult experience they will need, or can benefit from, professional intervention. The implementation of pre-emptive support measures is anticipated to improve patients’ resilience in coping with their illness and approaching death. This study aimed to investigate the impact of the keyworker role in a 3-year cancer supportive community care project to identify and provide for the needs of patients with a diagnosis of non-curative cancer. It was a qualitative study incorporating face-to-face interviews and focus groups with 19 healthcare professionals and 25 patients and carers from an urban East Midlands locality and a thematic analysis of qualitative interview and focus group transcripts. The project was positively evaluated by patients, carers and professionals. However, the findings raised questions about the different configuration of ‘need’ within the lay and professional perspectives and how this should most appropriately be addressed. In contrast to widespread professional assumptions about patients’ need for counselling, many patients preferred to turn to their friends and families for support, and to adopt a stance of emotional and personal self-reliance as a strategy for coping with their predicament. The study highlights the continuing orientation of services around professional, rather than patient, agendas and the momentum towards increasing specialisation of professional roles and the medicalisation of everyday life that flows from this.
Patient information is widely regarded both as a resource and an entitlement: a means of... more
Patient information is widely regarded both as a resource and an entitlement: a means of 'empowering' patients to behave as 'consumers' of health care. Patient 'satisfaction' has come to be regarded as an important outcome of care. This article presents qualitative interview data regarding the experience of patient information provision and the results of a self-completed Information Satisfaction Questionnaire (ISQ) among patients and relatives affected by cancer. It considers the implications of the differences between these for service evaluation and current policy implementation promoting patients as informed and expert consumers of health care. The study findings contribute to growing evidence that the high rate of patients' expressed satisfaction with different aspects of service provision as indicated by structured questionnaire responses is largely an artefact of the method of data collection. Accounts of negative experiences were common, but did not translate into expressed criticism or overt dissatisfaction. It is important that the limitations of such surveys are contextualized in relation to qualitative findings such as those of the present study. Especially in the face of serious and life-threatening illness, professional constructs such as 'information delivery', 'satisfaction' and 'shared decision making' have little resonance for many patients, who prefer to trust in professional expertise and to eschew the acquisition of specialist knowledge and active involvement in decisions about health care.
Despite the assumption that the home is the preferred place of death, most people will die in institutional care, specifically in acute hospital wards. Inevitably, this relatively public setting puts the privacy and dignity of the dying... more
Despite the assumption that the home is the preferred place of death, most people will die in institutional care, specifically in acute hospital wards. Inevitably, this relatively public setting puts the privacy and dignity of the dying patient and grieving visitors at considerable risk. Our study used observation of practice and staff interviews to describe the process of recognizing, communicating, and managing dying on an acute medical gerontology ward in a large teaching hospital in the United Kingdom. The particularly public nature of hospitals in the United Kingdom is critically examined in the light of privacy as a fundamental component of maintaining dignity and the “good death.”
Objective To elicit and compare patients' and pharmacists' views on their interactions during the dispensing of prescriptions for statins.Method Semi-structured interviews with 25 patients who were current or previous recipients of a... more
Objective To elicit and compare patients' and pharmacists' views on their interactions during the dispensing of prescriptions for statins.Method Semi-structured interviews with 25 patients who were current or previous recipients of a statin on prescription, and 20 community pharmacists. Patient interviews explored their experiences of interacting with community pharmacists when first-time or repeat prescriptions were dispensed for statins. Pharmacist interview topics included roles that pharmacists currently perform in relation to patients receiving statins on prescription, and perceived responsibilities in relation to patients receiving prescribed statins.Key findings Most patients said they used the same pharmacy regularly to get their prescriptions dispensed. Despite this, few patients' accounts indicated a perceived relationship with the pharmacist. Most pharmacists reported that they routinely provided information about dosage and side-effects to patients receiving a statin on prescription for the first time. In contrast, patients rarely reported that they had received such information from a pharmacist. In relation to repeat prescriptions for statins, patients' and pharmacists' accounts were similar and indicated that pharmacists rarely initiate discussions about treatment. Pharmacists' explanation for this was that they assumed the patient would already have received all the information they needed from other health professionals, and that patients would ask if they had any further quèries.Conclusions These findings indicate a gap between pharmacists' perceptions of their interactions with patients receiving a first-time prescription for a statin and patients' reported experience. Pharmacists may perceive that they provide more information than is actually the case. Pharmacists and patients agreed that when repeat prescriptions for statins are being dispensed there is little or no discussion about the medicine. Pharmacists need to consider how they might elicit patients' needs in a more systematic way.
To understand the contribution of the Medicines Use Review consultation to counseling practice in community pharmacies.Qualitative study involving ten weeks of observations in two community pharmacies and interviews with patients and... more
To understand the contribution of the Medicines Use Review consultation to counseling practice in community pharmacies.Qualitative study involving ten weeks of observations in two community pharmacies and interviews with patients and pharmacy staff.‘Traditional’ counseling on prescription medicines involved the unilateral transfer of information from pharmacist to patient. Over-the-counter discussions were initiated by patients and offered more scope for patient participation. The recently introduced MUR service offers new opportunities for pharmacists’ role development in counseling patients about their medicines use. However, the study findings revealed that MUR consultations were brief encounters dominated by closed questions, enabling quick and easy completion of the MUR form. Interactions resembled counseling when handing out prescription medicines. Patients rarely asked questions and indeterminate issues were often circumvented by the pharmacist when they did. MURs did little to increase patients’ knowledge and rarely affected medicine use, although some felt reassured about their medicines. Pragmatic constraints of workload and pharmacy organisation undermined pharmacists’ capacity to implement the MUR service effectively.Pharmacists failed to fully realise the opportunity offered by MURs being constrained by situational pressures.Pharmacist consultation skills need to be reviewed if MURs are to realise their intended aims.
In recent decades there has been increasing interest in the subject of stress and a proliferation of research into the contribution of stress as a cause of illness. This association has been widely popularized and now has an established... more
In recent decades there has been increasing interest in the subject of stress and a proliferation of research into the contribution of stress as a cause of illness. This association has been widely popularized and now has an established position within the body of popular ideas about health and illness. Nevertheless, very little has been confidently established about the relationship between stress and illness. The precise nature of stress itself eludes definition and there is no consensus as to what it encompasses. There has been a confusion of the models of stress developed in the laboratory and those applied to society. Early laboratory research was modelled on 'mechanical' images of stress taken from contemporary physics and engineering. Since then the stress theory has been heavily psychologised, although it still relies for its validation on the physiological models with which it is fundamentally non-comparable. It is argued that stress is not something naturally occurring in the world, but a manufactured concept which has by now become a 'social fact'. As such it has direct implications for the ways in which people perceive their world and act within it. Stress has increasingly come to be regarded as an integral part of everyday experience. Although much of the attractiveness of the stress theory derives from its seeming to reduce the arbitrariness of suffering, it also carries with it a significant ideological component. This can serve as a means of organising and expressing a variety of ideas about the social order relating, for example, to issues of individual autonomy and responsibility, or to the ways in which society might be perceived as dangerous, repressive or pathogenic.
Objective Mutual respect and understanding between parents and healthcare professionals are fundamental to the realisation of a partnership in the provision of care to chronically ill children. The aim of this study was an exploration of... more
Objective Mutual respect and understanding between parents and healthcare professionals are fundamental to the realisation of a partnership in the provision of care to chronically ill children. The aim of this study was an exploration of parents' perspectives on their relationship with healthcare professionals and their involvement in decisions about their child's care.Setting The paediatric department of a district general hospital in the West Midlands, England.Method Qualitative methodology using semi-structured interviews with 27 parents from 20 families with a chronically ill child.Key findings In the time following the child's diagnosis, parents' attitudes towards healthcare professionals often moved from reliance and trust to scepticism and suspicion. This change in attitude derived from their experience of inadequate communication and perception of professionals' failure to understand the reality of the intense and relentless demands and challenges that confront families providing care for a chronically ill child. Parents tended to be initially accepting and deferential to professional expertise. Over time, however, as their experience and confidence increased, they often desired a greater involvement in decisions about treatment and care. This transition, between initial, or episodic, dependency and active partnership, was often not recognised or accommodated by professionals. It was difficult for both parties to negotiate the transition from parents' dependency on health professionals to becoming more independent managers of care.Conclusions Professionals should be aware of parents' preferred and changing level of involvement in care and decision making, and endeavour to accommodate these throughout the process of providing care for chronically ill children.
