Evaluating meta-ethnography: systematic analysis and synthesis of qualitative research.

BACKGROUND: Methods for reviewing and synthesising findings from quantitative research studies in health care are well established. Although there is recognition of the need for qualitative research to be brought into the evidence base, there is no consensus about how this should be done and the methods for synthesising qualitative research are at a relatively early stage of development. OBJECTIVE: To evaluate meta-ethnography as a method for synthesising qualitative research studies in health and health care. METHODS: Two full syntheses of qualitative research studies were conducted between April 2002 and September 2004 using meta-ethnography: (1) studies of medicine-taking and (2) studies exploring patients' experiences of living with rheumatoid arthritis. Potentially relevant studies identified in multiple literature searches conducted in July and August 2002 (electronically and by hand) were appraised using a modified version of the Critical Appraisal Skills Programme questions for understanding qualitative research. Candidate papers were excluded on grounds of lack of relevance to the aims of the synthesis or because the work failed to employ qualitative methods of data collection and analysis. RESULTS: Thirty-eight studies were entered into the medicine-taking synthesis, one of which did not contribute to the final synthesis. The synthesis revealed a general caution about taking medicine, and that the practice of lay testing of medicines was widespread. People were found to take their medicine passively or actively or to reject it outright. Some, in particular clinical areas, were coerced into taking it. Those who actively accepted their medicine often modified the regimen prescribed by a doctor, without the doctor's knowledge. The synthesis concluded that people often do not take their medicines as prescribed because of concern about the medicines themselves. 'Resistance' emerged from the synthesis as a concept that best encapsulated the lay response to prescribed medicines. It was suggested that a policy focus should be on the problems associated with the medicines themselves and on evaluating the effectiveness of alternative treatments that some people use in preference to prescribed medicines. The synthesis of studies of lay experiences of living with rheumatoid arthritis began with 29 papers. Four could not be synthesised, leaving 25 papers (describing 22 studies) contributing to the final synthesis. Most of the papers were concerned with the everyday experience of living with rheumatoid arthritis. This synthesis did not produce significant new insights, probably because the early papers in the area were substantial and theoretically rich, and later papers were mostly confirmatory. In both topic areas, only a minority of the studies included in the syntheses were found to have referenced each other, suggesting that unnecessary replication had occurred. LIMITATIONS: We only evaluated meta-ethnography as a method for synthesising qualitative research, but there are other methods being employed. Further research is required to investigate how different methods of qualitative synthesis influence the outcome of the synthesis. CONCLUSIONS: Meta-ethnography is an effective method for synthesising qualitative research. The process of reciprocally translating the findings from each individual study into those from all the other studies in the synthesis, if applied rigorously, ensures that qualitative data can be combined. Following this essential process, the synthesis can then be expressed as a 'line of argument' that can be presented as text and in summary tables and diagrams or models. Meta-ethnography can produce significant new insights, but not all meta-ethnographic syntheses do so. Instead, some will identify fields in which saturation has been reached and in which no theoretical development has taken place for some time. Both outcomes are helpful in either moving research forward or avoiding wasted resources. Meta-ethnography is a highly interpretative method requiring considerable immersion in the individual studies to achieve a synthesis. It places substantial demands upon the synthesiser and requires a high degree of qualitative research skill. Meta-ethnography has great potential as a method of synthesis in qualitative health technology assessment but it is still evolving and cannot, at present, be regarded as a standardised approach capable of application in a routinised way. FUNDING: Funding for this study was provided by the Health Technology Assessment programme of the National Institute for Health Research.

Capturing users' experience of UK out-of-hours primary medical care: piloting and psychometric properties of the Out-of-hours Patient Questionnaire.

BACKGROUND AND OBJECTIVE: Provision of out-of-hours care in the UK National Health Service (NHS) has changed in recent years with new models of provision and the introduction of national quality requirements. Existing survey instruments tend to focus on users' satisfaction with service provision; most were developed without undertaking supporting qualitative fieldwork. In this study, a survey instrument was developed taking account of these changes in service provision and undertaking supporting qualitative fieldwork. This paper reports on the development and psychometric properties of the new survey instrument, the Out-of-hours Patient Questionnaire (OPQ), which aims to capture information on the entirety of users' experiences of out-of-hours care, from the decision to make contact through to completion of their care management. METHODS: An iterative approach was undertaken to develop the new instrument which was then tested in users of out-of-hours services in three geographically distributed UK settings. For the purposes of this study, "service users" were defined as "individuals about whom contact was made with an out-of-hours primary care medical service", whether that contact was made by the user themselves, or via a third party. Analysis was undertaken of the acceptability, reliability and validity of the survey instrument. RESULTS: The OPQ tested is a 56-item questionnaire, which was distributed to 1250 service users. Respondents were similar in respect of gender, but were older and more affluent (using a proxy measure) than non-respondents. Item completion rates were acceptable. Respondents sometimes completed sections of the questionnaire which did not equate to their principal mode of management as recorded in the record of the contact. Preliminary evidence suggests the OPQ is a valid and reliable instrument which contains within it two discrete scales--a consultation satisfaction scale (nine items) and an "entry-access" scale (four items). Further work is required to determine the generalisability of findings obtained following use of the OPQ, especially to non-white user populations. CONCLUSION: The OPQ is an acceptable instrument for capturing information on users' experiences of out-of-hours care. Preliminary evidence suggests it is both valid and reliable in use. Further work will report on its utility in informing out-of-hours service planning and configuration and standard-setting in relation to UK national quality requirements.

Exploring users' experiences of accessing out-of-hours primary medical care services.

BACKGROUND: Since 2000, out-of-hours primary medical care services in the UK have undergone major changes in the organisation and delivery of services in response to recommendations by the Carson Review and more recently, through the new General Medical Services Contract (GMS2). People calling their general practice in the evening or at weekends are redirected to the out-of-hours service which may offer telephone advice, a home visit or a visit to a treatment centre. Little is known about users' experiences under the new arrangements. AIM: To explore users' experiences of out-of-hours primary medical care. DESIGN OF STUDY: A qualitative study employing focus groups and telephone interviews. SETTING: Three out-of-hours primary medical care service providers in England. METHODS: Focus groups and telephone interviews were conducted with 27 recent users of out-of-hours services. RESULTS: Key areas of concern included the urgency with which cases are handled, and delays when waiting for a call back or home visit. Users felt that providers were reluctant to do home visits. The service was regarded as under-resourced and frequently misused. Many expressed anxiety about calling, feeling unsure about how appropriate their call was and many were uncertain about how the service operated. CONCLUSIONS: Service users need clear information on how current out-of-hours services operate and how it should be used. Problems with triaging need to be addressed, users should be kept informed of any delays, and care needs to be taken to ensure that the new arrangements do not alienate older people or individuals with complex health needs.

Improving stroke patients' care: a patient held record is not enough.

BACKGROUND: Stroke patients' care in hospital tends to be poorly organised, with poor communication and a lack of information being frequent sources of complaint. The purpose of this study was to evaluate whether a patient-held record (PHR) would result in greater patient satisfaction and better care planning for stroke patients. METHODS: A time series control (6 months) - intervention (8 months) - control (6 months) was used among London teaching hospital general medical and geriatric medicine inpatient wards. All stroke patients admitted to the wards during the intervention phase received a PHR and were instructed in its use. Demographic, stroke severity, social factors and outcomes were collected from all stroke patients during all phases of the study. RESULTS: Of 252 stroke patients aged 46 to 98 years entered into the study, by six months after admission 118 (46.8%) had died. PHR and control group patients were well matched in terms of socio-demographic characteristics and pre-stroke ability. At six months after admission, 119 (97%) patients responded to the questionnaire. Just over half (56%, 13) of intervention group patients recalled receiving a PHR. Of those patients, 59% reported reading the PHR, 27% had lost their PHR, and two-thirds said they had difficulties encouraging staff to write in the PHR. Half felt that possession of the PHR was more trouble than it was worth. PHR group patients were more satisfied with the recovery they had made (79% vs. 59%, p=0.04), but felt less able to talk to staff about their problems (61% vs. 82%, p=0.02). PHR group patients reported receiving fewer explanations about their condition (18% vs. 33%, p=0.12) and treatment (26% vs. 45%, p=0.07), and were more afraid of asking doctors questions (21% vs. 4%, p=0.01) than controls. PHR group patients were no better prepared for hospital discharge than control group patients, and both groups were ill-informed about services and benefits that might have helped after discharge from hospital. CONCLUSIONS: Stroke patients received poor information and explanations regardless of whether they received a PHR. A PHR did not appear to improve patient satisfaction or discharge planning, and may have reduced opportunities for communication and explanation.

Rhetoric and reality in stroke patient care.

The aim of this study was to identify aspects of the process of care that might help explain the improved outcomes associated with stroke units. Three different care settings for stroke patients, an elderly care unit and general medical ward in an inner-city teaching hospital and a stroke unit in another teaching hospital in the same city, were compared using non-participant observational methods. Nurses on the stroke unit and general medical ward usually engaged in standardised and functional interaction with patients, while nurses on the elderly care unit were observed to adopt a more personal and attentive approach with patients. Rehabilitation nursing was rarely observed on the stroke unit, never on the general medical ward but always on the elderly care unit. There was evidence of effective communication between nurses and therapists on the elderly care unit but this was not observed on the stroke unit. On the elderly care unit the team appeared divided, with therapists and nurses on one side and medicine on the other, while on the stroke unit the divide was between doctors and therapists on one hand and nurses the other. On the general medical ward there was no team working. The observed lack of rehabilitation nursing, nurses' disengagement from the team and nurses' observed lack of warmth towards patients on the stroke unit were all surprising findings. Further research needs to examine whether such findings would be reproduced in stroke units elsewhere. If so, it might be that the better outcomes achieved on stroke units are despite rather than because of the nursing they receive there.

Qualitative analysis of stroke patients' motivation for rehabilitation.

OBJECTIVE: To explore the attitudes and beliefs of stroke patients identified by professionals as having either "high" or "low" motivation for rehabilitation. DESIGN: Qualitative study with semistructured interviews. SETTING: The stroke unit of an inner city teaching hospital. PARTICIPANTS: 22 patients with stroke who were undergoing rehabilitation; 14 with high motivation for rehabilitation and eight with low motivation. RESULTS: All patients thought rehabilitation was important for recovery. High motivation patients were more likely to view rehabilitation as the most important means of recovery and to accord themselves an active role in rehabilitation. These patients were also more likely to understand rehabilitation and in particular to understand the specialist role of the nursing staff. Many patients reported independence at home as a personal goal, though few low motivation patients related this goal to success in rehabilitation. Information from professionals about rehabilitation, favourable comparisons with other stroke patients, and the desire to leave hospital had a positive effect on motivation. Conversely, overprotection from family members and professionals, lack of information or the receipt of "mixed messages" from professionals, and unfavourable comparisons with other patients had a negative effect. CONCLUSIONS: There are some differences in beliefs between stroke patients identified as having low or high motivation for rehabilitation. These beliefs seem to be influenced by the environment in which the patient is rehabilitated. Professionals and carers should be made aware of the ways in which their behaviour can positively and negatively affect motivation.

A critical review of the concept of patient motivation in the literature on physical rehabilitation.

Rehabilitation professionals have long suspected that a patient's motivation plays an important role in determining the outcome of therapy, despite the lack of a clear definition of the phenomenon. The fact that such a subjective concept is commonly used by clinicians prompted this investigation into the range and nature of professional understandings of patient motivation. The literature dealing with physical rehabilitation and motivation was reviewed and was found to fall into three broad groups. One group of mainly clinical articles conceives of motivation as an internal 'personality trait' of the individual patient, and explains the nature and causes of motivation purely in terms of internal dispositions. Another body of literature considers motivation to be a quality which is affected by social factors, and stresses the importance of awareness of such factors in explaining motivation. The third approach considers social factors in combination with personality or clinical characteristics. It is argued that the personality-based approach facilitates moralising in the therapeutic encounter, a problem which is both highlighted and critiqued by the methodology which emphasises the importance of social factors. The practical implications of the relative merits of these different theories of motivation are considered.

Observing the process of care: a stroke unit, elderly care unit and general medical ward compared.

BACKGROUND AND PURPOSE: Patients on stroke units have better outcomes but it is not known why. We investigated the process of care on a stroke unit, an elderly care unit and a general medical ward. METHODS: Comparison of the three settings was by non-participant observation of 12 patients in each. Data were analysed using multi-level modelling methods. RESULTS: Stroke unit patients spent more time out of bed and out of their bay or room, and had more opportunities for independence than patients on the medical ward. There were more observed attempts on the stroke unit than on the general medical ward to interact with drowsy, cognitively- or speech-impaired patients. Stroke unit patients spent more time with visitors. Most of these aspects of care were also found on the elderly care unit, where patients also spent less time asleep or 'disengaged', more time interacting with nurses, and were given appropriate help more often than those elsewhere. Stroke unit patients received less eye contact, were ignored and treated in a dehumanizing way more frequently and had more negative interactions or activities than those elsewhere. CONCLUSIONS: We have identified some aspects of the process of care which may help explain the improved outcomes on stroke units. These aspects were also observed in the elderly care unit.

Does patient satisfaction reflect differences in care received after stroke?

BACKGROUND AND PURPOSE: Despite the volume of research into patient satisfaction, it is not clear whether satisfaction ratings reflect differences in care received after stroke or the characteristics of patients. The aim of this study is to test the hypothesis that patient satisfaction is independently related to differences in care received after stroke. METHODS: Stroke patients participating in a randomized controlled trial of early discharge to community therapy completed a satisfaction questionnaire and physical and psychological outcome measures at 4 and 12 months. Two hundred seventy-four patients (83%) were followed up at 4 months and 262 patients (79%) at 12 months. Use of therapy and community services was quantified. Logistic regression was used to investigate associations between satisfaction, patient characteristics, and service provision. RESULTS: The more therapy, meals on wheels, and home help visits patients received, the more likely they were to be satisfied. Patients in the conventional arm of the trial were less likely to express satisfaction than those discharged early to community therapy. Women, older people, anxious people, and those more functionally independent were more likely to be satisfied, while those with depression, speech and swallowing deficit, motor deficit, and poor subjective health were less likely to be satisfied. CONCLUSIONS: The finding that satisfaction assessments reflect real differences in the provision of care and occur independently of any associations with patient characteristics is new. Patient satisfaction should be taken seriously as an outcome.

The views of therapists on the use of a patient-held record in the care of stroke patients.

OBJECTIVE: To explore the views of therapists working with stroke patients on the use of a patient-held record (PHR) for stroke patients. A PHR was developed in the form of a pocket-sized booklet (21 cm x 14.5 cm) in which staff recorded information relating to the patient's management. The aim of the PHR was to facilitate communication and involve patients more directly in their care. METHODS: Six semi-structured group interviews were conducted with therapists (25 in total) from one inner city hospital. RESULTS: The following themes emerged from the content analysis: (1) Therapists were supportive of plans for a PHR, citing the benefits of greater patient involvement. (2) However, they questioned its feasibility, in particular the issue of patient responsibility and its use with the cognitively impaired. (3) They also questioned its ability to facilitate communication among health professionals because of existing differences in perspectives. (4) These therapists revealed concerns about the effect that information may have on patients. (5) They also raised practical issues about finding the time to make entries, wording and content of entries in the PHR. CONCLUSION: Responsibility for the PHR may enhance patients' understanding and involvement in their care, yet ownership alone does not guarantee the confidence needed to encourage dialogue between patients and care providers. Furthermore, it is doubtful whether a PHR can hope to overcome the fundamental differences in the philosophies of care which the therapists reported.

A patient-centred study of the consequences of stroke.

OBJECTIVE: To explore subjective accounts of the consequences of stroke. DESIGN: Qualitative methods using depth interviews. PARTICIPANTS AND SETTING: Forty people sampled ten months post stroke from a hospital stroke register which was established in two adjacent health districts in North Thames Regional Health Authority. RESULTS: Interviewees reported a number of ways in which the stroke had affected their daily lives, including difficulty with leaving the house, doing the housework, pursuing former leisure activities, inability to walk in the way they wanted, problems with communicating, washing, bathing and dressing, and with confusion and deteriorating memory. In all these areas people described the loss of social contact that accompanied these changes, and the loss of valued roles which had been embedded in the everyday functions they had previously performed. In general, people over the age of 70 were more seriously affected. CONCLUSION: The type of changes which people reported would not easily have been captured using standardized outcome measures, pointing to the value of qualitative methods in providing subjective accounts. In terms of clinical practice, there is a need to reduce people's isolation after stroke by providing home visits after discharge, particularly to those living alone, and also by reducing disability through rehabilitation and by tackling the environmental obstacles which can imprison people in their homes. The findings suggest that many people with stroke would benefit from being able to talk about the changes which have occurred. Imaginative proposals are needed to develop ways to help replace the loss of activities, social contacts and social roles, particularly among older people with stroke.

Determinants of handicap 1 and 3 years after a stroke.

A total of 361 consecutive admissions to hospital with acute stroke were followed up to examine the determinants of handicap 1 year and 2-3 years later. Handicap was measured using the London Handicap Scale, and data were collected on initial stroke severity, disability, mood and sociodemographic variables. Ninety-five of 170 survivors returned handicap questionnaires at 1 year, 102 of 149 survivors at 2-3 years, and 58 on both occasions. Mean handicap score decreased slightly between 1 and 2-3 years (45-48 on a 0-100 scale, 95% confidence interval for difference -1 to +7, p = 0.09). At both 1 and 2-3 years handicap was associated with pre-stroke disability, 1-year score disability, initial stroke severity and mood. Age and sex were associated at 1 year but not at 2-3 years. In multivariate analyses disability, stroke severity and mood were independently associated with handicap. None of the variables examined predicted change in handicap score. The study demonstrates the overriding importance of stroke severity (impairment) and disability in determining handicap. In comparison, social variables were less important.

Redefining 'doing something': health professionals' views on their role in the care of stroke patients.

Stroke has traditionally been considered, both by lay people and by many people working within the health services, to be a tragic yet essentially uninteresting condition, possibly because of its associations with old age, chronicity and the widespread perception that very little can be done about it. This study explored health professionals' views about their role in caring for people with stroke, and about what they gained from and contributed to this work. Questionnaires were distributed to staff working on an elderly care unit, a general medical ward and a stroke unit. Nurses and physiotherapists were positive and reported that they had much to offer people with stroke, and many rewards to gain from their work. Occupational therapists reported that in theory they had much to contribute to people with stroke, but in practice lack of resources and staff shortages prevented them from fulfilling their potential. Speech therapists also complained of scarce resources, and of a lack of recognition of their specialty, but felt able to contribute to improving peoples' quality of life. Both psychologists reported that their work with people with stroke was satisfying and stimulating. However, with the exception of the consultant on the stroke unit, doctors reported feeling they had little to offer, and little to gain from working with people with stroke. Therapists on the elderly care unit, and speech therapists in all settings reported difficulties within the multidisciplinary team. Although each profession had different concerns and priorities, the majority seemed to have a positive approach to their work with people with stroke. Similarly, the majority reported that the best thing about their work was when people recovered, although professions defined recovery differently.

Stroke patients' views on their admission to hospital.

OBJECTIVE: To explore which components of care were valued by patients admitted to hospital following a stroke. DESIGN: Qualitative study using in depth interviews 10 months after the stroke. SETTING: Two adjacent districts in North Thames Regional Health Authority. SUBJECTS: 82 survivors of stroke taken consecutively from a stroke register, 40 of whom agreed to be interviewed. RESULTS: Patients reported that during the acute stage of the stroke they wanted to put their faith in experienced and trusted experts who would help them make sense of the event, take all the actions necessary to ensure survival, and provide comfort and human warmth during the crisis. In addition to being reassured by the clinical tests and practical nursing help they received, patients valued feeling cared about by the staff. In most cases patients reported that their needs were met; however, the institutional nature of the hospital sometimes obstructed the fulfillment of their needs. CONCLUSION: Patients have important psychosocial needs during the acute stage of the stroke, which are often met by hospital admission. Patients gained benefits from their admission over and above those measurable in terms of morbidity or function. They used a combination of criteria to evaluate their care, focusing on the process as well as the outcome of care. Researchers and clinicians should do likewise.

How useful are non-random comparisons of outcomes and quality of care in purchasing hospital stroke services?

We performed a prospective observational study using a stroke register, case-note review and survey of carers with 6 months of follow-up in two adjacent health districts in East London. District 1 was a teaching district and had no special stroke service; District 2 had a comprehensive stroke service comprising stroke unit, review of all stroke admissions and community follow-up. Three hundred and sixty-one consecutive patients with stroke admitted to hospital and 103 carers were surveyed at 6 months from admission using the Royal College of Physicians (London) Stroke Audit standards. We also assessed mortality, disability, perceived health, mood, and satisfaction with services 6 months after stroke, carer mood, perceived health and satisfaction with services. The standard of care was below that set by the Royal College of Physicians of London in both districts and there were no significant differences between the districts in age-standardized mortality at 1 and 6 months, Barthel score, extended ADL score, Geriatric Depression score, Nottingham Health Profile score and patient satisfaction with services at 6 months. Carer outcomes did not differ between districts. Service costs, particularly costs of rehabilitation services, were much lower in District 2. A comprehensive district stroke service was not associated with major differences in patient outcomes or standards of care. This may have been because the non-random nature of the comparison meant that the patients differed in other ways than in the nature of treatment. Caution is needed when using these techniques in making purchasing decisions.