Patient and Public Involvement (PPI) in evidence synthesis: how the PatMed study approached embedding audience responses into the expression of a meta-ethnography.

BACKGROUND: Patient and public involvement (PPI) has become enshrined as an important pillar of health services empirical research, including PPI roles during stages of research development and analysis and co-design approaches. Whilst user participation has been central to qualitative evidence synthesis (QES) for decades, as seen in the Cochrane consumer network and guidelines, meta-ethnography has been slow to incorporate user participation and published examples of this occurring within meta-ethnography are sparse. In this paper, drawing upon our own experience of conducting a meta-ethnography, we focus on what it means in practice to 'express a synthesis' (stage 7). We suggest the methodological importance of 'expression' in Noblit and Hare's seven stage process (Noblit, GW and Hare, RD. Meta-ethnography: synthesizing qualitative studies, 1988) has been overlooked, and in particular, opportunities for PPI user participation within it. METHODS: Meta-ethnography comprises a seven-stage process of evidence synthesis. Noblit and Hare describe the final 7th stage of the meta-ethnography process as 'expression of synthesis', emphasizing co-construction of findings with the audience. In a previous study we conducted a meta-ethnography exploring patient and student experience of medical education within primary care contexts. We subsequently presented and discussed initial meta-ethnography findings with PPI (students and patients) in focus groups and interviews. We transcribed patient and student PPI interpretations of synthesis findings. As a research team, we then translated these into our existing meta-ethnography findings. RESULTS: We describe, with examples, the process of involving PPI in stage 7 of meta-ethnography and discuss three methodological implications of incorporating PPI within an interpretative approach to QES: (1) we reflect on the construct hierarchy of user participants' interpretations and consider whether incorporating these additional 1st order, 2nd level constructs implies an additional logic of 3rd order 2nd level constructs of the QES team; (2) we discuss the link between PPI user participation and what Noblit and Hare may have meant by ideas of 'expression' and 'audience' as integral to stage 7; and (3) we link PPI user participation to Noblit and Hare's underlying theory of social explanation, i.e. how expression of the synthesis is underpinned by ideas of translation and that the synthesis must be 'translated in the audience's (user participants) particular language'. CONCLUSIONS: The paper aims to complement recent attempts in the literature to refine and improve guidance on conducting a meta-ethnography, highlighting opportunities for PPI user participation in the processes of interpretation, translation and expression. We discuss the implications of user participation in meta-ethnography on ideas of 'generalisability'.

Preserving quantifiable ethnographic records of disappearing human lifeways.

The human evolutionary sciences place high value on quantitative data from traditional small-scale societies that are rapidly modernizing. These data often stem from the sustained ethnographic work of anthropologists who are today nearing the end of their careers. Yet many quantitative ethnographic data are preserved only in summary formats that do not reflect the rich and variable ethnographic reality often described in unpublished field notes, nor the deep knowledge of their collectors. In raw disaggregated formats, such data have tremendous scientific value when used in conjunction with modern statistical techniques and as part of comparative analyses. Through a personal example of longitudinal research with Batek hunter-gatherers that involved collaboration across generations of researchers, we argue that quantifiable ethnographic records, just like material artifacts, deserve high-priority preservation efforts. We discuss the benefits, challenges, and possible avenues forward for digitizing, preserving, and archiving ethnographic data before it is too late.

A meta-ethnography to understand the experience of living with urinary incontinence: 'is it just part and parcel of life?'

BACKGROUND: Urinary incontinence (UI) is highly prevalent and affects the lives of many men and women. We aimed to conduct a qualitative evidence synthesis (QES) to explore the experience of living with UI and to develop a conceptual model that can help us to understand this experience, and the potential barriers to appropriate healthcare. METHODS: We used the methods of meta-ethnography developed by Noblit and Hare and recently refined for larger studies. Meta-ethnography involves identifying concepts from the studies and abstracting these concepts into a line of argument. We searched for studies that explored the experience of adults with UI. We used the GRADE-CERQual framework to assess confidence in review findings. RESULTS: We screened 2307 titles, 429 abstracts, 107 full texts and included 41 studies (36 unique samples) in the synthesis. We organised the concepts into 26 conceptual categories, which we further abstracted into 6 themes: (1) Am I ill or is this normal? (2) It effects who I am and how I feel; (3) I feel stigmatised, ashamed and guilty; (4) talking can be difficult but it can help; (5) keeping incontinence under control; (6) have I got to the point that I need help? Our model conceptualises living with UI as navigating antagonists: Is UI normal or am I ill? Do I need help or am I managing? Do I keep UI to myself (and manage alone) or do I tell other people (and get the support that I need)? Do I use control strategies that focus on concealing (avoid risky situations, wear pads) versus, I use strategies that focus on improving the bodily function to improve continence. Our model highlights the experience of stigma, shame and guilt which exert a pull towards concealment. CONCLUSIONS: The culture of secrecy and profound sense of shame is barrier to seeking help. An environment which reduces the shame and stigma of UI may help people to switch the focus to strategies that will improve continence, rather than conceal incontinence.

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.

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 - 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.

Barriers to implementing the DSM-5 cultural formulation interview: a qualitative study.

The Outline for Cultural Formulation (OCF) in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) marked an attempt to apply anthropological concepts within psychiatry. The OCF has been criticized for not providing guidelines to clinicians. The DSM-5 Cultural Issues Subgroup has since converted the OCF into the Cultural Formulation Interview (CFI) for use by any clinician with any patient in any clinical setting. This paper presents perceived barriers to CFI implementation in clinical practice reported by patients (n = 32) and clinicians (n = 7) at the New York site within the DSM-5 international field trial. We used an implementation fidelity paradigm to code debriefing interviews after each CFI session through deductive content analysis. The most frequent patient threats were lack of differentiation from other treatments, lack of buy-in, ambiguity of design, over-standardization of the CFI, and severity of illness. The most frequent clinician threats were lack of conceptual relevance between intervention and problem, drift from the format, repetition, severity of patient illness, and lack of clinician buy-in. The Subgroup has revised the CFI based on these barriers for final publication in DSM-5. Our findings expand knowledge on the cultural formulation by reporting the CFI's reception among patients and clinicians.

Croatian anthropological terminology--challenges and dilemmas.

This paper describes the project ANTRONA aimed at constructing basic anthropological terminology that covers the entire range of anthropology as a science. It is a part of national language planning oriented terminology management for the Croatian language, and as such it is focused solely at the production of a terminographic database. The major difficulties encountered during the procedural stages of the project are outlined, such as the wide range of the interdisciplinary field of anthropology, including concepts and terms from natural and social sciences and humanities, as well as polysemy and fuzzy boundaries between the lexicon of the general language and specialized language. On the basis of several examples, we argue that terminography should be dealt with primarily by keeping in mind the range of its subsequent applications the aim of which is not only ontological, but also communicative in nature, and that functional pragmatic approach offers a more flexible framework for dealing with the demands of terminology in such an interdisciplinary field.

The Croatian national termbank Struna: a new platform for terminological work.

The development of the Croatian Special Field Terminology program (known by its Croatian acronym Struna) began in 2007 as part of an initial coordination project launched at the initiative of the Croatian Standard Language Council, and has since been financed by the Croatian Science Foundation. It is being carried out at the Institute of Croatian Language and Linguistics, which serves as the national coordinator. This paper describes the current design of the e-Struna termbank and explains the adjustments made in the database structure and in the terminographic approach, both to support and reflect the methodological issues concerning interdisciplinary and multidisciplinary work. Based on examples taken from the Croatian anthropological terminology collection special attention is given to two frequently neglected categories of terminological description: context and note.

Deconstruction of central line insertion guidelines based on the positive deviance approach-Reducing gaps between guidelines and implementation: A qualitative ethnographic research.

BACKGROUND: Despite a proven association between the implementation of prevention guidelines for central line associated blood stream infections (CLABSI) and reduction in CLABSI rates, in practice there is poor adherence. Furthermore, current guidelines fail to address the multiple process on the care continuum. This research is based on the bottom-up "Positive Deviance" (PD) approach, through which multiple creative and safer solutions for central line (CL) insertion were identified that were not previously described in the guidelines. The aim of the study was to deconstruct CLABSI prevention guidelines ("during insertion" process only) through the PD approach, working with physicians to identify additional actions that, in practice, help maintain a sterile environment and contribute to patient safety. METHODS AND FINDINGS: Our study included a qualitative ethnographic study involving 76 physicians, working in a division of internal medicine and two intensive care units (ICUs). We triangulated findings from a combination of data-collection methods: semi-structured interviews, focused observations, video documentation, Discovery & Action Dialogue (DAD), and simulations. Deconstruction analysis was performed. A total of 23 creative extensions and variations of CL insertion practices were identified. CONCLUSIONS: The PD approach enables the identification of vital nuggets of hidden wisdom missing from the formal explicit CLABSI guidelines, and therefore helps bridge the gap between theory and praxis. During the guideline's deconstruction process, through collaborative staff learning, the written procedure is transformed into a living, breathing and cooperative one. It can reduce hospital stays and save lives, and therefore needs careful attention of healthcare scholars and practitioners.

Service users' first accounts of experiencing endings from a psychological service or therapy: A systematic review and meta-ethnographic synthesis.

PURPOSE: To review and synthesize the qualitative literature on service users' experiences of endings from a psychological service or therapy. METHODS: A systematic search of the peer-reviewed literature identified qualitative studies meeting specific inclusion criteria. A modified CASP tool was used to critically appraise their quality, and a meta-ethnographic approach was used to synthesize their findings. RESULTS: Twelve papers met the inclusion criteria. The interpretation of findings suggested three key themes: anticipation of ending, service user control, and sense of responsibility. Although studies varied in geographical location and type of service, they were consistently of high quality. CONCLUSIONS: The review highlights the importance of service users' perspectives in understanding the experiences of endings. The findings complement existing literature and provide new interpretations. Considerations for practice were limited; however, the review provides useful directions for future research. PRACTITIONER POINTS: When ending therapy, clinicians should consider the dyadic nature of the therapeutic relationship and the emotional impact this may have upon both service users and staff. Further consideration should be given to how staff manage their responses to the ending. The time-limited structure of therapy may aid the ending process by relieving staff and service users of responsibility.

[Medical research-ethics applied to social sciences: relevance, limits, issues and necessary adjustments]. / L'éthique médicale appliquée aux sciences humaines et sociales: pertinence, limites, enjeux, et ajustements néessaires.

Social sciences are concretely concerned by the ethics of medical research when they deal with topics related to health, since they are subjected to clearance procedures specific to this field. This raises at least three questions: - Are principles and practices of medical research ethics and social science research compatible? - Are "research subjects" protected by medical research ethics when they participate in social science research projects? - What can social sciences provide to on-going debates and reflexion in this field? The analysis of the comments coming from ethics committees about social science research projects, and of the experience of implementation of these projects, shows that the application of international ethics standards by institutional review boards or ethics committees raises many problems in particular for researches in ethnology anthropology and sociology. These problems may produce an impoverishment of research, pervert its meaning, even hinder any research. They are not only related to different norms, but also to epistemological divergences. Moreover, in the case of studies in social sciences, the immediate and differed risks, the costs, as well as the benefits for subjects, are very different from those related to medical research. These considerations are presently a matter of debates in several countries such as Canada, Brasil, and USA. From another hand, ethics committees seem to have developed without resorting in any manner to the reflexion carried out within social sciences and more particularly in anthropology Still, the stakes of the ethical debates in anthropology show that many important and relevant issues have been discussed. Considering this debate would provide openings for the reflexion in ethics of health research. Ethnographic studies of medical research ethics principles and practices in various sociocultural contexts may also contribute to the advancement of medical ethics. A "mutual adjustment" between ethics of medical research and social sciences is presently necessary: it raises new questions open for debate.

How old are you now?

Cherkas et al. provide a new, biological approach to a classic problem in anthropology--the estimation of age.

Reflections on Native Ethnography by a Nurse Researcher.

There are benefits and challenges associated with conducting research in a familiar setting, especially when the researcher is more an insider than an outsider. The aim of this article is to explore the author's experience as a native scholar conducting ethnographic research among the Swahili peoples of Lamu, Kenya. This article focuses on methodological issues related to conducting ethnographic research among the author's own people, including examining the issues of anthropological reflexivity as a native ethnographer and highlighting the author's experiences embodying multiple identities. Native ethnographers must consider the challenges associated with negotiating multiple roles in the research setting, especially in the presence of sociocultural factors such as gender stratification, complex kinship networks, socioeconomic hierarchies, illiteracy, and poverty. Embracing rather than being confused by the multiple levels of understanding native researchers bring to studies of their communities opens up new avenues of research and possibilities.

A focused ethnography of a Child and Adolescent Mental Health Service: factors relevant to the implementation of a depression trial.

BACKGROUND: Prior to commencing a randomised controlled trial, we conducted a focused ethnography to ensure that the trial was well suited to the proposed setting. METHODS: A six-month observation of a Child and Adolescent Mental Health Service site in the North-East of England was undertaken to observe the site procedures, staff culture and patient care pathways. During this period, documentary data were collected and interviews were conducted with key informants to provide insight into staff perceptions of the proposed trial. The data were coded using thematic analysis and the resulting themes were verified by a second coder. RESULTS: Seventeen documents were collected, 158 h of observation and six formal staff interviews were undertaken. Four themes emerged from the data; non-clinically orientated variation in practice, diagnosis, capacity and staff economy. Non-clinically orientated variation in practice occurred when staff decisions were based upon resource availability rather than on clinical judgement. Diagnosis demonstrated differing staff confidence in making diagnoses and in the treatment of patients who had received a diagnosis. Capacity consisted of the time to attend training and the psychological capacity to consider or incorporate learning into practice. Staff economy was characterised by staff changes and shortages. There was significant interaction between the themes, with staff economy emerging as a central barrier to research. The results directly informed adaptations to the trial protocol. CONCLUSIONS: An ethnographic approach has provided important insights into the individual, practical and organisational boundaries into which a trial would need to be implemented.

Translators, traitors, and traducers: Perjuring Hawaiian same-sex texts through deliberate mistranslation.

In the long history of the West's encounter with Hawaiian culture, which began in the late 1700s with Captain Cook, translators and translations have often been the tools of intentional falsehood, thus demonstrating the truth of the Italian proverb, Traduttore, traditore ("the translator is a traitor")--particularly with regard to same-sex texts. The standards of truth have often been subverted in translation by the demands of foreign religion, hegemony, business, and academe. This subversion continues to this day in the form of the "missionary mentality" in politics and law. The way out of this situation is a brutally honest cleaning-off of the besmirched Hawaiian texts.

Psychology's "Crisis" and the Need for Reflection. A Plea for Modesty in Psychological Theorizing.

This paper discusses the need for contextualization and reflection of psychological theorizing within its respective cultural and historical context. By acknowledging the anthropological assumptions which form a key part of every psychological theory and connect psychological thinking with broader cultural values, norms, ideals and meanings, psychologists can gain a deeper understanding of the limits of their own theories. It is argued that the prolonged debate within academic psychology concerning its status and methodology which became famous as "psychology's crisis" is an effect of the neglect of these implicit anthropological assumptions. Especially as cultural and cultural-historical psychologists, we should avoid the improper universalization of particular models of what defines a human being.

Ethics in anthropology: dilemmas and conundrums.

This paper is a call for awareness and continual examination of the multifaceted nature of ethics and closely related ideas as they relate to anthropology. At the very least, the lack of common understanding of these ideas has been and continues to be a pressing prblem for all who practice anthropology. In this vein, abbreviated etymologies of these critical concepts are put forth as prologue to forays into ethics in the academy and of science as context for ethical maneuver. Shifting conditions in anthropology are then described in relation to altered ethical orders with examples of early hints of the contemporary scene being drawn from Oscar Lewis's commentary on the raucous reception in Mexico of his book The Children of Sanchez.

Hearing where we're coming from--ethically and professionally.

Anthropologists concerned about the discipline's ability to cope ethically and ethnographically with a globalized world should not dismiss too hastily the methodology--and the ethics built into it--that anthropology developed over the last century. This methodology of making "displacing" translations, based on ethnographic experience and a politics of translation, can still provide a workable ethics and a viable labor of ethnography even in the world at present.