Perceptions and experiences of control among people living with motor neurone disease: a systematic review and thematic synthesis.

PURPOSE: Current research suggests that feeling a lack of control is common among people living with Motor Neurone Disease (plwMND). This systematic review explores and synthesises evidence about: (1) What factors contribute towards perceptions of control in plwMND (2) How do plwMND attempt to maintain control in their daily lives? METHODS: A systematic search from inception to January 2022 for peer-reviewed journal articles in English reporting qualitative and mixed-method primary studies or reviews of plwMND's perceptions or experiences of control was conducted on CINAHL, MEDLINE, PsycINFO, ASSIA, Embase and AMED. Eligible articles underwent quality appraisal, data extraction and a thematic synthesis was carried out. RESULTS: Twenty publications, 19 primary studies and one review, from nine countries, reporting the views of 578 participants aged from 20 to 90 years were included. Two key analytical themes were identified (1) diagnosis can lead to a disruption of previously held control beliefs (2) plwMND use a range of control strategies to attempt to retain control in their lives. CONCLUSION: This is the first systematic review and qualitative evidence synthesis to reveal the strategies plwMND use to regain control and that control beliefs about health, fate, identity and bodily control are significantly altered by the diagnosis. Implications for rehabilitationOutcome measures for plwMND should consider personal values and preferences as well as objective clinical measurements.plwMND use a range of control strategies which may alter and change over time therefore healthcare professionals may also need to review and adapt treatment decisions over time.The differing viewpoints of healthcare professionals and plwMND should be considered in clinical situations to reduce the potential for conflict.

A methodological systematic review of meta-ethnography conduct to articulate the complex analytical phases.

BACKGROUND: Decision making in health and social care requires robust syntheses of both quantitative and qualitative evidence. Meta-ethnography is a seven-phase methodology for synthesising qualitative studies. Developed in 1988 by sociologists in education Noblit and Hare, meta-ethnography has evolved since its inception; it is now widely used in healthcare research and is gaining popularity in education research. The aim of this article is to provide up-to-date, in-depth guidance on conducting the complex analytic synthesis phases 4 to 6 of meta-ethnography through analysis of the latest methodological evidence. METHODS: We report findings from a methodological systematic review conducted from 2015 to 2016. Fourteen databases and five other online resources were searched. Expansive searches were also conducted resulting in inclusion of 57 publications on meta-ethnography conduct and reporting from a range of academic disciplines published from 1988 to 2016. RESULTS: Current guidance on applying meta-ethnography originates from a small group of researchers using the methodology in a health context. We identified that researchers have operationalised the analysis and synthesis methods of meta-ethnography - determining how studies are related (phase 4), translating studies into one another (phase 5), synthesising translations (phase 6) and line of argument synthesis - to suit their own syntheses resulting in variation in methods and their application. Empirical research is required to compare the impact of different methods of translation and synthesis. Some methods are potentially better at preserving links with the context and meaning of primary studies, a key principle of meta-ethnography. A meta-ethnography can and should include reciprocal and refutational translation and line of argument synthesis, rather than only one of these, to maximise the impact of its outputs. CONCLUSION: The current work is the first to articulate and differentiate the methodological variations and their application for different purposes and represents a significant advance in the understanding of the methodological application of meta-ethnography.

Improving reporting of meta-ethnography: the eMERGe reporting guidance.

AIMS: The aim of this study was to provide guidance to improve the completeness and clarity of meta-ethnography reporting. BACKGROUND: Evidence-based policy and practice require robust evidence syntheses which can further understanding of people's experiences and associated social processes. Meta-ethnography is a rigorous seven-phase qualitative evidence synthesis methodology, developed by Noblit and Hare. Meta-ethnography is used widely in health research, but reporting is often poor quality and this discourages trust in and use of its findings. Meta-ethnography reporting guidance is needed to improve reporting quality. DESIGN: The eMERGe study used a rigorous mixed-methods design and evidence-based methods to develop the novel reporting guidance and explanatory notes. METHODS: The study, conducted from 2015 to 2017, comprised of: (1) a methodological systematic review of guidance for meta-ethnography conduct and reporting; (2) a review and audit of published meta-ethnographies to identify good practice principles; (3) international, multidisciplinary consensus-building processes to agree guidance content; (4) innovative development of the guidance and explanatory notes. FINDINGS: Recommendations and good practice for all seven phases of meta-ethnography conduct and reporting were newly identified leading to 19 reporting criteria and accompanying detailed guidance. CONCLUSION: The bespoke eMERGe Reporting Guidance, which incorporates new methodological developments and advances the methodology, can help researchers to report the important aspects of meta-ethnography. Use of the guidance should raise reporting quality. Better reporting could make assessments of confidence in the findings more robust and increase use of meta-ethnography outputs to improve practice, policy, and service user outcomes in health and other fields. This is the first tailored reporting guideline for meta-ethnography. This article is being simultaneously published in the following journals: Journal of Advanced Nursing, Psycho-oncology, Review of Education, and BMC Medical Research Methodology.

Improving reporting of meta-ethnography: The eMERGe reporting guidance.

AIMS: The aim of this study was to provide guidance to improve the completeness and clarity of meta-ethnography reporting. BACKGROUND: Evidence-based policy and practice require robust evidence syntheses which can further understanding of people's experiences and associated social processes. Meta-ethnography is a rigorous seven-phase qualitative evidence synthesis methodology, developed by Noblit and Hare. Meta-ethnography is used widely in health research, but reporting is often poor quality and this discourages trust in and use of its findings. Meta-ethnography reporting guidance is needed to improve reporting quality. DESIGN: The eMERGe study used a rigorous mixed-methods design and evidence-based methods to develop the novel reporting guidance and explanatory notes. METHODS: The study, conducted from 2015 - 2017, comprised of: (1) a methodological systematic review of guidance for meta-ethnography conduct and reporting; (2) a review and audit of published meta-ethnographies to identify good practice principles; (3) international, multidisciplinary consensus-building processes to agree guidance content; (4) innovative development of the guidance and explanatory notes. FINDINGS: Recommendations and good practice for all seven phases of meta-ethnography conduct and reporting were newly identified leading to 19 reporting criteria and accompanying detailed guidance. CONCLUSION: The bespoke eMERGe Reporting Guidance, which incorporates new methodological developments and advances the methodology, can help researchers to report the important aspects of meta-ethnography. Use of the guidance should raise reporting quality. Better reporting could make assessments of confidence in the findings more robust and increase use of meta-ethnography outputs to improve practice, policy, and service user outcomes in health and other fields. This is the first tailored reporting guideline for meta-ethnography. This article is being simultaneously published in the following journals: Journal of Advanced Nursing, Psycho-oncology, Review of Education, and BMC Medical Research Methodology.

Improving reporting of meta-ethnography: The eMERGe reporting guidance.

AIMS: The aim of this study was to provide guidance to improve the completeness and clarity of meta-ethnography reporting. BACKGROUND: Evidence-based policy and practice require robust evidence syntheses which can further understanding of people's experiences and associated social processes. Meta-ethnography is a rigorous seven-phase qualitative evidence synthesis methodology, developed by Noblit and Hare. Meta-ethnography is used widely in health research, but reporting is often poor quality and this discourages trust in and use of its findings. Meta-ethnography reporting guidance is needed to improve reporting quality. DESIGN: The eMERGe study used a rigorous mixed-methods design and evidence-based methods to develop the novel reporting guidance and explanatory notes. METHODS: The study, conducted from 2015 to 2017, comprised of: (1) a methodological systematic review of guidance for meta-ethnography conduct and reporting; (2) a review and audit of published meta-ethnographies to identify good practice principles; (3) international, multidisciplinary consensus-building processes to agree guidance content; (4) innovative development of the guidance and explanatory notes. FINDINGS: Recommendations and good practice for all seven phases of meta-ethnography conduct and reporting were newly identified leading to 19 reporting criteria and accompanying detailed guidance. CONCLUSION: The bespoke eMERGe Reporting Guidance, which incorporates new methodological developments and advances the methodology, can help researchers to report the important aspects of meta-ethnography. Use of the guidance should raise reporting quality. Better reporting could make assessments of confidence in the findings more robust and increase use of meta-ethnography outputs to improve practice, policy, and service user outcomes in health and other fields. This is the first tailored reporting guideline for meta-ethnography. This article is being simultaneously published in the following journals: Journal of Advanced Nursing, Psycho-oncology, Review of Education, and BMC Medical Research Methodology.

The existence and importance of patients' mental images of their head and neck cancer: A qualitative study.

OBJECTIVES: To explore the existence and importance of mental images of cancer among people with head and neck cancers with a focus on the perceived origins and meaning of mental images, their development over time, and their relationship to illness beliefs. METHODS: A longitudinal qualitative study consisting of 44 in-depth semi-structured interviews with 25 consecutive, newly-diagnosed head and neck cancer patients. Participants were invited to draw their images during the interviews. Follow-up interviews occurred after treatment completion. Analysis drew upon the principles of Interpretative Phenomenological Analysis (IPA). RESULTS: Many participants had mental images of their cancer which appeared to both embody and influence their beliefs about their illness, and affect their emotional response. For those who held them, mental images appeared to constitute an important part of their cognitive representation (understanding) of their illness. For some, their images also had a powerful emotional impact, being either reassuring or frightening. Images often appeared to originate from early clinical encounters, and remained fairly stable throughout treatment. Images could be conceptualised as 'concrete' (the perceived reality) and/or 'similic' (figurative). Patients' images reflected the perceived meaning, properties or 'intent' of the cancer-that is beliefs concerning the disease's identity, consequences and prognosis (likelihood of cure or control). CONCLUSIONS: People with head and neck cancer may develop a mental image of their disease, often generated early within clinical encounters, which can both reflect and influence their understanding of the cancer. Such images tend to be stable over time. We theorise that careful use of images in early consultations could avoid or minimise some distress, including fears of outcome or recurrence. Concrete or similic images and language could be employed later to change perceptions and reduce distress.

Prevalence of impaired glucose regulation in Europe: a meta-analysis.

BACKGROUND: Impaired glucose regulation represents an opportunity to prevent Type 2 diabetes mellitus. It is important to have a clear understanding of the prevalence of this condition in order to be able to plan interventions and health care provision. This paper presents a meta-analysis of literature assessing the prevalence of impaired glucose regulation in the general population of developed countries in Europe. METHODS: Five electronic databases were systematically searched in March 2014 to identify English language articles with general population samples aged 18 and over from developed countries in Europe. Values for the measures of interest were combined using a random effects model and analysis of the effects of moderator variables was carried out. RESULTS: A total of 5594 abstracts were screened, with 46 studies included in the review. Overall prevalence of impaired glucose regulation was 22.3%. Mean prevalence of impaired glucose tolerance was 11.4% (10.1-12.8) and did not differ by gender. Sample age, diagnostic criteria and country were found to have a significant univariate effect on prevalence of impaired glucose tolerance but only diagnostic criteria remained significant in multivariate analysis. Mean prevalence of impaired fasting glucose was significantly higher in men at 10.1% (7.9-12.7) compared with 5.9% in women (4-8.7). The only moderator variable with a significant effect on impaired fasting glucose prevalence was country. CONCLUSIONS: This meta-analysis shows a moderate prevalence of impaired glucose regulation in developed Europe with over one in five people meeting the criteria for either impaired glucose tolerance, impaired fasting glucose or both.

Why, when and how to update a meta-ethnography qualitative synthesis.

BACKGROUND: Meta-ethnography is a unique, systematic, qualitative synthesis approach widely used to provide robust evidence on patient and clinician beliefs and experiences and understandings of complex social phenomena. It can make important theoretical and conceptual contributions to health care policy and practice. RESULTS: Since beliefs, experiences, health care contexts and social phenomena change over time, the continued relevance of the findings from meta-ethnographies cannot be assumed. However, there is little guidance on whether, when and how meta-ethnographies should be updated; Cochrane guidance on updating reviews of intervention effectiveness is unlikely to be fully appropriate. This is the first in-depth discussion on updating a meta-ethnography; it explores why, when and how to update a meta-ethnography. Three main methods of updating the analysis and synthesis are examined. Advantages and disadvantages of each method are outlined, relating to the context, purpose, process and output of the update and the nature of the new data available. Recommendations are made for the appropriate use of each method, and a worked example of updating a meta-ethnography is provided. CONCLUSIONS: This article makes a unique contribution to this evolving area of meta-ethnography methodology.

A methodological systematic review of what's wrong with meta-ethnography reporting.

BACKGROUND: Syntheses of qualitative studies can inform health policy, services and our understanding of patient experience. Meta-ethnography is a systematic seven-phase interpretive qualitative synthesis approach well-suited to producing new theories and conceptual models. However, there are concerns about the quality of meta-ethnography reporting, particularly the analysis and synthesis processes. Our aim was to investigate the application and reporting of methods in recent meta-ethnography journal papers, focusing on the analysis and synthesis process and output. METHODS: Methodological systematic review of health-related meta-ethnography journal papers published from 2012-2013. We searched six electronic databases, Google Scholar and Zetoc for papers using key terms including 'meta-ethnography.' Two authors independently screened papers by title and abstract with 100% agreement. We identified 32 relevant papers. Three authors independently extracted data and all authors analysed the application and reporting of methods using content analysis. RESULTS: Meta-ethnography was applied in diverse ways, sometimes inappropriately. In 13% of papers the approach did not suit the research aim. In 66% of papers reviewers did not follow the principles of meta-ethnography. The analytical and synthesis processes were poorly reported overall. In only 31% of papers reviewers clearly described how they analysed conceptual data from primary studies (phase 5, 'translation' of studies) and in only one paper (3%) reviewers explicitly described how they conducted the analytic synthesis process (phase 6). In 38% of papers we could not ascertain if reviewers had achieved any new interpretation of primary studies. In over 30% of papers seminal methodological texts which could have informed methods were not cited. CONCLUSIONS: We believe this is the first in-depth methodological systematic review of meta-ethnography conduct and reporting. Meta-ethnography is an evolving approach. Current reporting of methods, analysis and synthesis lacks clarity and comprehensiveness. This is a major barrier to use of meta-ethnography findings that could contribute significantly to the evidence base because it makes judging their rigour and credibility difficult. To realise the high potential value of meta-ethnography for enhancing health care and understanding patient experience requires reporting that clearly conveys the methodology, analysis and findings. Tailored meta-ethnography reporting guidelines, developed through expert consensus, could improve reporting.

Do men's and women's accounts of surviving a stroke conform to Frank's narrative genres?

We compared the illness narratives of 9 male and 9 female United Kingdom stroke survivors using Frank's typologies of illness narratives. Most respondents presented a single dominant narrative genre ("quest memoir," "restitution," "chaos," or a new "despair" genre); none presented quest manifesto or automythology narratives of social action or self-reinvention. We found no gender differences apparent in which genres respondents presented. Stroke severity and the degree of anticipated or actual recovery largely influenced which genre predominated in individual accounts. Contrary to some sociological understandings of gender and health, gender appeared to be less influential on stroke survivors' illness accounts than aspects of the illness, such as its severity.

What parents say about disclosing the end of their pregnancy due to fetal abnormality.

OBJECTIVE: to describe men's and women's experiences of deciding whether to tell people in their social network, including their children, about their pregnancy loss following a termination for fetal abnormality. DESIGN: secondary analysis of qualitative narrative interview data informed by a critical realist approach. SETTING: respondents were recruited throughout the United Kingdom and interviewed at home between 2004 and 2005. PARTICIPANTS: twenty-eight women and nine men who had ended a pregnancy diagnosed with a fetal abnormality and who talked about disclosing or not disclosing the termination to others. FINDINGS: few respondents reported having any advice or information about whether or how to disclose their termination. None said they completely concealed their decision from adults in their social network; most said they disclosed selectively, telling close friends and family they had terminated and acquaintances they had miscarried. Most respondents reported telling their young children that the baby had died but did not reveal that they had chosen to end the pregnancy. A minority had not told their existing offspring about the pregnancy loss. Common reasons given for (partially) concealing a termination were: guilt over the decision; to avoid being judged; and to protect other people's feelings. Common reasons for disclosure were: others knew of the pregnancy; needing time off work; needing practical help and/or emotional support during diagnosis and termination; and wanting recognition of their loss. Positive consequences of disclosure were said to be getting more support and less criticism than expected; negative consequences included not getting the anticipated support and empathy; and encountering disapproval. Some respondents felt that concealing their pregnancy loss from their children had resulted in their confusion over the cause of their parents' distress. Some men said they found it hard to access emotional support from their social networks because of expectations about how men 'should' deal with emotions. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: midwives have to make difficult judgements about what, how and when to provide information when trying to support and advise parents who have ended a pregnancy due to fetal abnormality. Further education and training in this area could be of benefit. Midwives could signpost parents to existing sources of advice around disclosure, taking into account parents' individual preferences, help parents to consider the potential implications of disclosure and concealment and different ways of disclosing. They could also recommend alternative sources of emotional support, bearing in mind that men in particular may find it harder to access support from their social networks.

Multimorbidity in primary care: a systematic review of prospective cohort studies.

BACKGROUND: Primary care increasingly deals with patients with multimorbidity, but relevant evidence-based interventions are scarce. Knowledge about multimorbidity over time is required to inform the development of effective interventions. AIM: This review identifies prospective cohort studies of multimorbidity in primary care to determine: their nature, scope and key findings; the methodologies used; and gaps in knowledge. DESIGN: Systematic review. METHOD: Studies were identified by searching electronic databases, reviewing citations, and writing to authors. Searches were limited to adult populations with no restrictions on publication date or language. In total, 996 articles were identified and screened. RESULTS: Of the 996 articles, six detailing five completed prospective cohort studies were selected as appropriate. Three of the studies were undertaken in the US and two in The Netherlands; none was nationally representative. The main focus of the studies was: healthcare utilisation and/or costs (n = 3); patients' physical functioning (n = 1); and risk factors for developing multimorbidity (n = 1). The conditions that were included varied widely. The findings of these studies showed that multimorbidity increased healthcare costs (n = 2), inpatient admission (n = 1), death rates (n = 1), and service use (n = 3), and reduced physical functioning (n = 1). One study identified psychosocial risk factors for multimorbidity. No study used random sampling, sample sizes were relatively small (414-3745 patients at baseline), and study duration was relatively short (1-4 years). No study focused on prevalence, treatment use, patient safety, service models, cultural or socioeconomic factors, and patient experience, and no study collected qualitative data. CONCLUSION: Few longitudinal studies based in primary care have investigated multimorbidity. Further large, long-term prospective studies are required to inform healthcare commissioning, planning, and delivery.

Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality.

BACKGROUND: Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality. OBJECTIVE: To explore the role that expectant parents' experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality. DESIGN: Secondary analysis of qualitative narrative interview data informed by contextual systems framework. SETTING: Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006. PARTICIPANTS: Twenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality. FINDINGS: Most respondents recounted using their experiential knowledge of disability, whether of their unborn baby's condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby's specific disability, sought out others' experiences of the condition following antenatal diagnosis.The nature of a parent's experiential knowledge did not predict whether they continued with or terminated their pregnancy. DISCUSSION: Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby's condition with health professionals who are aware of the influence this might have on parents' decisions.

How information about other people's personal experiences can help with healthcare decision-making: a qualitative study.

OBJECTIVE: To investigate people's views of using 'general facts' and information about other people's 'personal experiences' for health-related decision-making. METHODS: Sixty-two people, who between them had experience of five different focal health issues, participated in 12 focus groups and 9 interviews. Exploration of uses of the two types of information was supported by discussion of illustrative excerpts. RESULTS: There was less discussion of 'general facts'; participants thought it obvious that good decisions required these. Participants reported having used 'personal experiences' information to: recognise decisions that needed consideration; identify options; appraise options and make selections (including by developing and reflecting on their reasoning about possible choices); and support coping strategies. Their inclination to use 'personal experiences' information was apparently moderated by assessments of personal relevance, the motives of information providers and the 'balance' of experiences presented. CONCLUSION: People can use 'personal experiences' information in various ways to support their decision-making, and exercise some discrimination as they do. PRACTICE IMPLICATIONS: 'Personal experiences' information may help people in a number of ways in relation to decision-making. However, 'personal experiences' information does not replace the need for 'general facts' and care should be taken when it is used in resources for patients.

How personal experiences feature in women's accounts of use of information for decisions about antenatal diagnostic testing for foetal abnormality.

There has been a striking growth in the availability of health-related information based on personal experience in recent years and internet users are often drawn towards other people's stories about their health. Accounts of other people's experiences might convey social and emotional information that is not otherwise available but little is known about how it is used or the implications of its use in practice. This paper examines how people refer to information about other people's experiences when accounting for decisions about antenatal diagnostic testing for foetal abnormality. We conducted a secondary analysis of 37 qualitative interviews undertaken across the UK with 36 women and nine of their male partners (eight couples were interviewed together) who talked about diagnostic testing for foetal abnormality in 55 pregnancies. When describing their decisions, respondents referred to examples of knowledge gleaned from their own and other individuals' experiences as well as information based on biomedical or clinical-epidemiological research (usually about the probabilities of having a child affected by health problems or the probability of diagnostic tests causing miscarriage). Both forms of knowledge were employed in people's accounts to illustrate the legitimacy and internal coherence of decisions taken. The analysis demonstrates the personally idiosyncratic ways that people reflect on and incorporate different types of information to add meaning to abstract ideas about risk, to imagine the consequences for their own lives and to help them to make sense of the decisions they faced.

One stop or full stop? The continuing challenges for researchers despite the new streamlined NHS research governance process.

BACKGROUND: Obtaining the necessary approvals and permission for clinical research requires successful negotiation of the ethical and R&D layers of the NHS. Differences in structure and governance frameworks feature between the constituent nations of the UK (England, Scotland, Wales and Northern Ireland), which adds complexity to cross-national studies. Difficulties in carrying out research in the NHS in the UK due to bureaucratic and time-consuming governance processes have led to the development of a new system of application and co-ordination from 2009. This paper illustrates how this new system fails to be consistent and streamlined and is unlikely to become so unless changes are made to the implementation and management of the governance processes. METHODS: We present a case study of the research governance process at the survey stage of an investigation into the use, preferences and need for information by people making choices or decisions about health care. The method involved home-based, face-to-face interviewing in a questionnaire survey in relation to decisions about lymphoma treatment, Down's syndrome screening in pregnancy, and caring for people with dementia. RESULTS: Our experience of the ethics stage was very positive, noting an efficient process of application and a speedy decision, both in relation to the initial application and to subsequent substantial amendments. By contrast, the R&D stages were very slow, most with unexplained delays, but some offering contradictory advice and exhibiting a lack of clear guidance and training for NHS staff. The R&D arrangements in Scotland were far quicker and more likely to be successful than in England. Overall, the delays were so severe that substantial parts of the research could not be delivered as planned within the funding timescale. CONCLUSIONS: If high-quality research in the NHS, particularly in England, is to be delivered in a timely and cost-effective way, R&D processes for gaining research governance approval need improvement. Attention is needed in process implementation and management, particularly in relation to staff training, as well as clarity in guidance and communication within and between organisations.