Trust, temporality and systems: how do patients understand patient safety in primary care? A qualitative study.

INTRODUCTION: Patient safety research has tended to focus on hospital settings, although most clinical encounters occur in primary care, and to emphasize practitioner errors, rather than patients' own understandings of safety. OBJECTIVE: To explore patients' understandings of safety in primary care. METHODS: Qualitative interviews were conducted with patients recruited from general practices in northwest England. Participants were asked basic socio-demographic information; thereafter, topics were largely introduced by interviewees themselves. Transcripts were coded and analysed using NVivo10 (qualitative data software), following a process of constant comparison. RESULTS: Thirty-eight people (14 men, 24 women) from 19 general practices in rural, small town and city locations were interviewed. Many of their concerns (about access, length of consultation, relationship continuity) have been discussed in terms of quality, but, in the interviews, were raised as matters of safety. Three broad themes were identified: (i) trust and psycho-social aspects of professional-patient relationships; (ii) choice, continuity, access, and the temporal underpinnings of safety; and (iii) organizational and systems-level tensions constraining safety. DISCUSSION: Conceptualizations of safety included common reliance on a bureaucratic framework of accreditation, accountability, procedural rules and regulation, but were also individual and context-dependent. For patients, safety is not just a property of systems, but personal and contingent and is realized in the interaction between doctor and patient. However, it is the systems approach that has dominated safety thinking, and patients' individualistic and relational conceptualizations are poorly accommodated within current service organization.

Sensemaking and the co-production of safety: a qualitative study of primary medical care patients.

This study explores the ways in which patients make sense of 'safety' in the context of primary medical care. Drawing on qualitative interviews with primary care patients, we reveal patients' conceptualisation of safety as fluid, contingent, multi-dimensional, and negotiated. Participant accounts drew attention to a largely invisible and inaccessible (but taken for granted) architecture of safety, the importance of psycho-social as well as physical dimensions and the interactions between them, informal strategies for negotiating safety, and the moral dimension of safety. Participants reported being proactive in taking action to protect themselves from potential harm. The somewhat routinised and predictable nature of the primary medical care consultation, which is very different from 'one off' inpatient spells, meant that patients were not passive recipients of care. Instead they had a stock of accumulated knowledge and experience to inform their actions. In addition to highlighting the differences and similarities between hospital and primary care settings, the study suggests that a broad conceptualisation of patient safety is required, which encompasses the safety concerns of patients in primary care settings.

Blame the Patient, Blame the Doctor or Blame the System? A Meta-Synthesis of Qualitative Studies of Patient Safety in Primary Care.

OBJECTIVE: Studies of patient safety in health care have traditionally focused on hospital medicine. However, recent years have seen more research located in primary care settings which have different features compared to secondary care. This study set out to synthesize published qualitative research concerning patient safety in primary care in order to build a conceptual model. METHOD: Meta-ethnography, an interpretive synthesis method whereby third order interpretations are produced that best describe the groups of findings contained in the reports of primary studies. RESULTS: Forty-eight studies were included as 5 discrete subsets where the findings were translated into one another: patients' perspectives of safety, staff perspectives of safety, medication safety, systems or organisational issues and the primary/secondary care interface. The studies were focused predominantly on issues seen to either improve or compromise patient safety. These issues related to the characteristics or behaviour of patients, staff or clinical systems and interactions between staff, patients and staff, or people and systems. Electronic health records, protocols and guidelines could be seen to both degrade and improve patient safety in different circumstances. A conceptual reading of the studies pointed to patient safety as a subjective feeling or judgement grounded in moral views and with potentially hidden psychological consequences affecting care processes and relationships. The main threats to safety appeared to derive from 'grand' systems issues, for example involving service accessibility, resources or working hours which may not be amenable to effective intervention by individual practices or health workers, especially in the context of a public health system. CONCLUSION: Overall, the findings underline the human elements in patient safety primary health care. The key to patient safety lies in effective face-to-face communication between patients and health care staff or between the different staff involved in the care of an individual patient. Electronic systems can compromise safety when they override the opportunities for face-to-face communication. The circumstances under which guidelines or protocols are seen to either compromise or improve patient safety needs further investigation.

Relationship continuity: when and why do primary care patients think it is safer?

BACKGROUND: Doctor-patient continuity is popular with patients and practitioners, and is associated with better outcomes; however, changes in policy and practice organisation have diminished its scope. Although there has been some discussion of safety implications from professionals' perspective, patients' views remain largely unexplored. AIM: To explore patients' understanding of safety in primary care. DESIGN AND SETTING: An interview-based study with patients from general practices in the northwest of England. METHOD: Patients were recruited from five general practices through patient participation groups and posters in waiting rooms, with further participants recruited through snowballing techniques until no new themes emerged. In-depth interviews were digitally recorded and transcribed. Anonymised transcripts were coded and analysed inductively. Emergent themes were discussed by the team. RESULTS: For patients, relationship continuity was not simply a matter of service quality but an important safety concern that offered greater psychosocial security than consultations with unfamiliar GPs. Relationship continuity enabled the GP to become a repository of information; acquire specialist knowledge of a patient's condition; become familiar with the patient's consulting behaviour; provide holistic care; and foster the development of trust. Patients were also aware of the risks: a false sense of security and lack of a fresh perspective. Their desire for continuity varied with the nature of their concerns, psychological vulnerability, and perception of GPs' qualities and skills. No one supported a return to imposed continuity. CONCLUSION: Relationship continuity and choice of GP were important safety strategies, neither of which is adequately supported by recent policy changes.

Barriers to deferred cord clamping in preterm infants.

OBJECTIVES: To describe the range of practices employed by units conducting deferred cord clamping at very preterm birth. DESIGN: Qualitative study using semistructured interviews with neonatal doctors, nurses, midwives, obstetricians and managers in a sample of UK maternity units. PARTICIPANTS: 33 neonatal doctors, neonatal nurses, midwives, obstetricians and managers. SETTING: UK maternity units in 2012. RESULTS: Four key themes emerged. The first concerns the variation in guideline content, the absence of a practice of stabilisation with cord intact, and issues with implementing and maintaining changes in practice. The second concerns the challenges in assessing eligibility. The third concerns the competing priorities of delivering the intervention and proceeding with other stabilisation manoeuvres and the associated anxiety experienced by professionals. The final theme relates to the issue of uncertainty as to optimal treatment choices. CONCLUSIONS: The evidence surrounding deferred cord clamping in very preterm infants is unclear. This study describes the reported practice of units deferring cord clamping in 2012 and will inform trial development.

"Risky business": a critical analysis of the role of crisis resolution and home treatment teams.

BACKGROUND: In 2000, the Department of Health for England recommended the creation of crisis resolution and home treatment teams (CRHTs) in order to reduce the number and length of psychiatric hospital admissions. Central to this was the role of gate-keeping all potential admissions. AIM: To examine the interface between crisis resolution and home treatment and other mental health services. METHODS: Semi-structured interviews with mental health professionals (n = 25) at eight sites within one Strategic Health Authority region. RESULTS: Despite wide variation in approach and provision, all teams were confronting common issues related to tensions at both ends of the service user trajectory - on initial assessment and on discharge. CONCLUSION: The CRHT model is likely to be most effective when there is low staff turnover, flexibility in inter-team working arrangements and senior practitioners have both acute and community experience. Rather than being seen primarily as gatekeeper to the acute service, it would be better to take a system approach and view the CRHT as a resource for clients awaiting discharge or seeking to avoid hospital admission that is equally available to both acute and community services.

Electronic consultation as an alternative to hospital referral for patients with chronic kidney disease: a novel application for networked electronic health records to improve the accessibility and efficiency of healthcare.

PROBLEM: Chronic kidney disease is increasingly recognised in the UK, leading to a greater demand for specialist services. Traditional means of meeting this demand rely on GP referral of patients to see a nephrologist. Hospital assessment may be inconvenient for patients and inefficient for health services. SETTING: 17 general practices and a secondary care nephrology service in Bradford, UK. DESIGN: A before and after evaluation comparing nephrology referrals from implementation and non-implementation practices following the introduction of electronic consultations (e-consultations) for chronic kidney disease. KEY MEASURES FOR IMPROVEMENT: The number, appropriateness and quality of new referrals (paper and electronic) from primary care, the timeliness of responses and the satisfaction of patients and health professionals with the new service. Strategies for change Electronic sharing of primary care electronic health records with the nephrology service was introduced to implementation practices. Participating GPs attended education workshops and received paper and e-guidance about the new service. EFFECTS OF CHANGE: There was a significant reduction in paper referrals from implementation practices. E-consultation provided nephrologists with access to more clinical information. GPs reported that the service was convenient, provided timely and helpful advice, and avoided outpatient referrals. Specialist recommendations were well followed, and GPs felt more confident about managing chronic kidney disease in the community. LESSONS LEARNT: E-consultation promotes effective management of patients with mild-to-moderate chronic kidney disease in primary care, allowing specialist resources to be directed towards supporting patients with more complex needs. There is a potential role for e-consultation in other chronic disease specialties.

Electronic medical records in diabetes consultations: participants' gaze as an interactional resource.

Two routine consultations in primary care diabetes clinics are compared using extracts from video recordings of interactions between nurses and patients. The consultations were chosen to present different styles of interaction, in which the nurse's gaze was either primarily toward the computer screen or directed more toward the patient. Using conversation analysis, the ways in which nurses shift both gaze and body orientation between the computer screen and patient to influence the style, pace, content, and structure of the consultation were investigated. By examining the effects of different levels of engagement between the electronic medical record and the embodied patient in the consultation room, we argue for the need to consider the contingent nature of the interface of technology and the person in the consultation. Policy initiatives designed to deliver what is considered best-evidenced practice are modified in the micro context of the interactions of the consultation.

The use of biomedicine, complementary and alternative medicine, and ethnomedicine for the treatment of epilepsy among people of South Asian origin in the UK.

BACKGROUND: Studies have shown that a significant proportion of people with epilepsy use complementary and alternative medicine (CAM). CAM use is known to vary between different ethnic groups and cultural contexts; however, little attention has been devoted to inter-ethnic differences within the UK population. We studied the use of biomedicine, complementary and alternative medicine, and ethnomedicine in a sample of people with epilepsy of South Asian origin living in the north of England. METHODS: Interviews were conducted with 30 people of South Asian origin and 16 carers drawn from a sampling frame of patients over 18 years old with epilepsy, compiled from epilepsy registers and hospital databases. All interviews were tape-recorded, translated if required and transcribed. A framework approach was adopted to analyse the data. RESULTS: All those interviewed were taking conventional anti-epileptic drugs. Most had also sought help from traditional South Asian practitioners, but only two people had tried conventional CAM. Decisions to consult a traditional healer were taken by families rather than by individuals with epilepsy. Those who made the decision to consult a traditional healer were usually older family members and their motivations and perceptions of safety and efficacy often differed from those of the recipients of the treatment. No-one had discussed the use of traditional therapies with their doctor. The patterns observed in the UK mirrored those reported among people with epilepsy in India and Pakistan. CONCLUSION: The health care-seeking behaviour of study participants, although mainly confined within the ethnomedicine sector, shared much in common with that of people who use global CAM. The appeal of traditional therapies lay in their religious and moral legitimacy within the South Asian community, especially to the older generation who were disproportionately influential in the determination of treatment choices. As a second generation made up of people of Pakistani origin born in the UK reach the age when they are the influential decision makers in their families, resort to traditional therapies may decline. People had long experience of navigating plural systems of health care and avoided potential conflict by maintaining strict separation between different sectors. Health care practitioners need to approach these issues with sensitivity and to regard traditional healers as potential allies, rather than competitors or quacks.

'What really annoys me is people take it like it's a disability', epilepsy, disability and identity among people of Pakistani origin living in the UK.

This paper reports on a study of Pakistani people with epilepsy. It explores their attitudes towards their condition, others' attitudes, its impact on their lives, and the extent to which they considered themselves as disabled. Epilepsy was variously interpreted within biomedical, folk and religious paradigms. In line with popular understandings, participants associated disability with stable, permanent and visible physical impairments and did not consider themselves as disabled. However, they also recognised a social dimension to their experience. Much of the distress and disadvantage they experienced was socially determined, both through direct prejudice and discrimination, and indirectly through a fear of others' negative reactions. However, the invisible and unpredictable nature of epilepsy meant that they could conceal their condition and thereby mitigate its social effects. 'Disability' was not experienced as a static and permanent state but as a potential identity that was both contingent and contested. The literature portrays people moving from biomedical to social interpretations of disability. However, the tensions experienced by people in the study were more between competing religious interpretations of their condition and, to some extent, between religious and medical approaches. Conceptions of disability, which are presented in the literature as antagonistic and mutually exclusive, were experienced as different dimensions reflecting the complexity of experience. The paper concludes by suggesting that for many people, for whom disability is an ambiguous, contingent and contested identity, public self-identification as disabled is an unrealistic goal. Rather than conceiving of disability as primarily physical or primarily social, it would be better construed as a complex interweaving of multiple factors--physical, environmental, socio-cultural and psychological factors.

Experience of wrong site surgery and surgical marking practices among clinicians in the UK.

BACKGROUND: Little is known about the incidence of "wrong site surgery", but the consequences of this type of medical error can be severe. Guidance from both the USA and more recently the UK has highlighted the importance of preventing error by marking patients before surgery. OBJECTIVE: To investigate the experiences of wrong site surgery and current marking practices among clinicians in the UK before the release of a national Correct Site Surgery Alert. METHODS: 38 telephone or face-to-face interviews were conducted with consultant surgeons in ophthalmology, orthopaedics and urology in 14 National Health Service hospitals in the UK. The interviews were coded and analysed thematically using the software package QSR Nud*ist 6. RESULTS: Most surgeons had experience of wrong site surgery, but there was no clear pattern of underlying causes. Marking practices varied considerably. Surgeons were divided on the value of marking and varied in their practices. Orthopaedic surgeons reported that they marked before surgery; however, some urologists and ophthalmologists reported that they did not. There seemed to be no formal hospital policies in place specifically relating to wrong site surgery, and there were problems associated with implementing a system of marking in some cases. The methods used to mark patients also varied. Some surgeons believed that marking was a limited method of preventing wrong site surgery and may even increase the risk of wrong site surgery. CONCLUSION: Marking practices are variable and marking is not always used. Introducing standard guidance on marking may reduce the overall risk of wrong site surgery, especially as clinicians work at different hospital sites. However, the more specific needs of people and specialties must also be considered.

What does the use of a computerized checklist mean for patient-centered care? The example of a routine diabetes review.

The authors examine the interaction between nurses and patients with type 2 diabetes during routine consultations in primary care settings in the United Kingdom. Through preconsultation interviews, the authors identified the patients' expectations. The article draws on videotaped consultations with 25 patients with type 2 diabetes. Using conversation analysis, the authors examine the use of a rigid agenda, imposed via a computerized checklist, and consider how far this is able to suppress the patient's agenda. They consider the potential impact for the patient and the factors that might encourage the clinician, and the nurse specifically, to adopt a narrowly task-based approach to the consultation. They identify two potentially conflicting strands within contemporary diabetes care, patient-centered practice and an emphasis on biomedical audit, and suggest that achievement of the former might be compromised by the demands of the latter.

South Asians and epilepsy: exploring health experiences, needs and beliefs of communities in the north of England.

PURPOSE: To examine the beliefs and experiences of South Asians with epilepsy and the extent of provision of appropriate information and accessible services for them by health professionals. METHODS: Qualitative interviews with 30 South Asians with epilepsy, 16 carers and 10 health professionals. In addition, two focus groups were held with 16 South Asians without epilepsy recruited from community centers. The interview sample was divided by religious groupings (Hindus, Sikhs and Muslims). Fieldwork was conducted in Bradford and Leeds (England). RESULTS: Beliefs that epilepsy is caused by spirit possession (Muslims) or attributable to sins committed in a past life (Sikhs and Hindus) were reported as being widely held among South Asians living both in the UK and the Indian subcontinent, although few informants themselves subscribed to such views. Compliance with conventional medication was high; however, those who experienced seizures most often were most likely to turn to traditional South Asian therapies. Most informants used both treatments simultaneously. The main issues regarding the provision of services were: lack of appropriate information and advice; language and communication barriers; problems in interaction with health professionals. Also discussed were the potential merits of attending support groups. Greatest dissatisfaction was expressed in relation to primary care, whereas the highest praise was reserved for specialist epilepsy nurses. CONCLUSIONS: Our findings show both similarities and differences between participants' experiences, where gender, age or other aspects of personal biography can be as important as religion, culture or country of origin. Furthermore, the impact of being diagnosed with epilepsy can be exacerbated by structural impediments to accessing information and appropriate services.

Religious beliefs about causes and treatment of epilepsy.

BACKGROUND: It has been acknowledged that religious and complementary therapies are commonly used among South Asian communities in the UK. However, little is known about their religious beliefs in relation to epilepsy and the type of South Asian therapies that they use to treat the condition. AIM: To explore the influences of spiritual and religious beliefs on explanation of the cause of epilepsy, and the choice of treatment in people of South Asian origin who have epilepsy. DESIGN OF STUDY: Qualitative study using interviews with patients, carers, health professionals, and focus groups of people from minority ethnic communities. SETTING: Bradford and Leeds. METHOD: Semi-structured individual interviews with 20 Muslims, six Sikhs, and four Hindus with epilepsy; 16 nominated carers (family members, friends); 10 health professionals (specialist GPs, neurologists, specialists nurses, social workers, community GPs); and two focus groups with a total of 16 South Asians without epilepsy. RESULTS: It was found that over half of responders attributed their illness to fate and the will of God, or as punishment for sins of a past life. Some patients had experienced prejudice from people who believed that their epilepsy was contagious. A strong network of traditional healers was found, providing a parallel system of health care in the UK and on the Indian subcontinent. People turned to religiospiritual treatments in desperation for a cure, often under the influence of their families after the perceived failure of Western medicine. Such treatments were viewed as complementary rather than as an alternative to Western medication. Younger people in particular expressed considerable scepticism about the effectiveness of these traditional South Asian treatments. CONCLUSIONS: In this study's South Asian sample, patients commonly turned to traditional healers in search of better health. Health professionals should be aware of the belief systems of these patients and understand the types of treatments in common use. Although these treatments might potentially compete with Western health care, they are used as an adjunct rather than a substitute. Patients have a 'healthy' scepticism about the effectiveness of such treatments, and adherence to medical therapy does not appear to be affected.

Evidence of cultural hybridity in responses to epilepsy among Pakistani muslims living in the UK.

OBJECTIVES: To examine how people from Bradford's Pakistani Muslim community experience living with epilepsy. Specifically, the paper addresses social interactions and negotiations with care providers and considers how different understandings of epilepsy are integrated. METHODS: Interviews were conducted with a sample of Bradford's Pakistani Muslim community (n = 20). Interviews were analysed to identify themes and significant areas of shared concern. RESULTS: This paper identifies popular, professional and folk sectors contributing to an individual's 'health system'. Where sectors overlap, zones of hybridity are created: that is, a person might simultaneously seek help from a doctor and from a religious healer, or might offer explanations for seizures that include neurological and spiritual components. DISCUSSION: While there are many similarities between the experiences of these minority ethnic community members and published work on the lived experience of epilepsy in other communities, there are also important differences that service providers need to recognize and respond to. Differences include forms of cultural expression and specific language needs. Improving communication between professionals and persons with epilepsy needs to be prioritized.

A problem of communication? Diabetes care among Bangladeshi people in Bradford.

People of Bangladeshi origin in the UK continue to experience poorer health and poorer healthcare than other sections of the community. Although communication with medical and nursing staff has long been recognised as key to the provision of effective healthcare services, efforts to overcome communication problems have often been minimal: many practitioners and patients rely on informal interpreters, usually family members, to assist them, despite the shortcomings of these arrangements. The present paper examines the experiences of 12 Bangladeshi people in Bradford, obtained during the course of a wider evaluation of diabetes services. All but one of the in-depth interviews were carried out in Sylheti and explored respondents' experiences of diabetes and local services. Software-assisted analysis of the transcripts followed a framework approach. It was found that, in the absence of alternatives, informal interpreting support was a necessity for many people: making appropriate arrangements frequently involved disruption to family members' routines and responsibilities, yet access to healthcare was often not possible without them. Despite the acknowledged problems, informal arrangements were often preferred: the benefits included greater privacy, support in the consultation, and a shared understanding of advice and instructions. Many patients nonetheless received poor quality care, although this appeared to be related less to language difficulties than to professional attitudes and methods of working.

Access to diabetes services: the experiences of Bangladeshi people in Bradford, UK.

Recent years have seen a renewed emphasis in UK healthcare policy on access to services, yet there has been little research into possible inequalities in access for people from different ethnic backgrounds. This paper examines access from the point of view of a group of Bangladeshi people with diabetes, whose views were obtained as part of a wider evaluation of diabetes services. Their message is a powerful one. The problems they experienced, however, cannot be attributed solely to cultural insensitivity, in which providers adopt a 'like it or lump it' approach. The wider evaluation provides a context within which to identify similarities with, as well as differences from, other groups in the community, and the findings show that the experiences of this vulnerable group highlight more general weaknesses in service provision. The paper also shows that conventional analysis of access in terms of barriers to be overcome misses a crucial dimension: the ability to make full use of services. Gaining access does not mean that needs will be met appropriately, and patients vary in the extent to which they are able and enabled to play an active role in obtaining the services they need.

A service users' research advisory group from the perspectives of both service users and researchers.

Much has been written about the importance of involving service users in the research process. Far less is available about the experience of involvement from the perspective of service users themselves. The present paper is a joint account by service users and researchers of a service users' advisory group set up to support and advise a project to evaluate diabetes services in Bradford, UK. The establishment of a separate advisory group for service users is, to our knowledge, an innovative approach to lay involvement within mainstream National Health Service (NHS)-based research. Factors that contributed to the group's success included personal contact, continuity of membership and integration into the management structure of the project. Also valued were the confidence in numbers which membership of the group gave, and the opportunity to meet and discuss issues away from the formal and somewhat intimidating atmosphere of the project's steering group. Aside from the personal value to participants and any impact on the quality of research outcomes, wider benefits included the ability to share knowledge with others and gain greater intercultural understanding.

Informal care and terminal illness.

This paper is based on a study of the care and services received by people in the year before death in one Yorkshire health authority. In the spring of 1997 in-depth interviews were carried out with bereaved relatives and carers of a weighted sample of 33 people who had died in one Yorkshire health authority in the previous 18 months. Deaths where people were judged to have needed no input from palliative care services were excluded. The sample covers a range of different caring arrangements, experiences of caring for someone who is dying, support from formal services, place and manner of death. All those interviewed were providing some form of informal care or support to those who died, in some cases 24-h care. The interviews provided a valuable insight into ordinary people's experiences of death and of caring for someone who is dying. Most importantly for the purposes of this study, they gave insight into their experiences of services to support both the dying person and themselves in their caring role. The paper discusses the ways in which care of the terminally ill is distinctive. It explores the role of informal care in relation to the wider character and history of the local community, in particular the significance of its declining industrial base, and secondly, the availability of appropriate services to support those caring for the terminally ill. Finally, it makes recommendations about service planning and delivery which challenge the current framework for providing services to the terminally ill.

User involvement and the NHS reforms.

The policy of 'user involvement' in the UK National Health Service emerged during the 1990s along with the reforms that created an internal market. Despite the official rhetoric, progress has been limited. Critics suggest that, not only was the policy flawed in its conception by the construction of service users as consumers and the conflation of consumerism with empowerment, but collaborative models of involvement have tended to legitimate rather than challenge existing provision. Some commentators have questioned the value of user involvement initiatives and proposed that alternative approaches, such as a strengthening of procedural rights or alignment with broader political campaigns, would be more appropriate. The low prominence given in the recent Government White Paper The New NHS1 to the contribution of service users, however, represents less of an ideological shift than a concentration on other, in the Government's view, more pressing priorities: namely, a concern to address the problems of public legitimacy and low staff morale by engaging in greater public participation and giving health professionals a more central role. The result has been a weakening of the users' voice by a conflation of user involvement with public participation and giving health professionals the authority to define users' needs for them. Service users risk, not only having their contribution devalued, but losing the right to an independent and distinctive voice. There is a real danger that the issues of user involvement will not be included on local agendas and the disparities between provision and need and between professionals' and users' views will increase.