The Publishing Dilemmas of Authors Who Have Lived Experience With Mental Illness.

This column details some of the ways in which psychiatric survivors or those writing about their lived experience with mental illness are disadvantaged and devalued in mainstream academic publishing. This devaluation stems from structural issues involving various organizations, persons, and practices. Breaking the constraints of this structure is extremely difficult, but the author proposes some ways of doing so.

PPI in psychiatry and the problem of knowledge.

This article begins by locating Patient and Public involvement ((PPI) historically and argues that 'mental health' was a special case. This movement held promise for service users in repositioning them as researchers as opposed to 'subjects'. We argue, however, that ultimately it failed and was reduced to involved publics 'tinkering at the edges'. In respect to this we reference institutions, hierarchies, organisations and the overall political climate. Ultimately, however, it failed at the level of knowledge itself in that t he underlying assumptions of conventional researchers, their aims and goals, clashed with those of the assumptions and aims of survivors. However, we argue that all is not lost, the mainstream itself is imploding and beneath the surface forms of distinctly survivor-led knowledge are emerging.

Decolonising global mental health: The role of Mad Studies.

In recent years, there has been a growing and high-profile movement for 'global mental health'. This has been framed in 'psych system' terms and had a particular focus on what has come to be called the 'Global South' or 'low and middle-income countries'. However, an emerging 'Mad Studies' new social movement has also developed as a key challenge to such globalising pressures. This development, however, has itself both being impeded by some of the disempowering foundations of a global mental health approach, as well as coming in for criticism for itself perpetuating some of the same problems as the latter. At the same time, we are also beginning to see it and related concepts like the UNCRPD being given new life and meaning by Global South activists as well as Global North activists. Given such contradictions and complexities, the aim of this paper is to offer an analysis and explore ways forward consistent with decolonizing global mental health and addressing madness and distress more helpfully globally, through a Mad Studies lens.

Is 'another' psychiatry possible?

In this paper, we examine a number of approaches that propose new models for psychiatric theory and practices: in the way that they incorporate 'social' dimensions, in the way they involve 'communities' in treatment, in the ways that they engage mental health service users, and in the ways that they try to shift the power relations within the psychiatric encounter. We examine the extent to which 'alternatives' - including 'Postpsychiatry', 'Open Dialogue', the 'Power, Threat and Meaning Framework' and Service User Involvement in Research - really do depart from mainstream models in terms of theory, practice and empirical research and identify some shortcomings in each. We propose an approach which seeks more firmly to ground mental distress within the lifeworld of those who experience it, with a particular focus on the biopsychosocial niches within which we make our lives, and the impact of systematic disadvantage, structural violence and other toxic exposures within the spaces and places that constitute and constrain many everyday lives. Further, we argue that a truly alternative psychiatry requires psychiatric professionals to go beyond simply listening to the voices of service users: to overcome epistemic injustice requires professionals to recognise that those who have experience of mental health services have their own expertise in accounting for their distress and in evaluating alternative forms of treatment. Finally we suggest that, if 'another psychiatry' is possible, this requires a radical reimagination of the role and responsibilities of the medically trained psychiatrist within and outside the clinical encounter.

Critical qualitative research on 'madness': knowledge making and activism among those designated 'mad'.

This paper charts the background to a project which aimed to map the knowledge being generated across the world by people silenced for centuries - the 'mad': a term with derogatory historical resonances but which is now being reclaimed. The idea that those designated 'mad' can produce knowledge is novel: 'mad' people are imagined as lacking rationality, and incapable of producing knowledge; they are subject to epistemic injustice. Patient engagement in research has grown in the last 20 years but we lack methodological frameworks through which such knowledge can be surfaced. One goal of the project is to let the mad speak their knowledge, often practical knowledge. To do this we had to innovate methodology. Centrally, we refuse the distinction between theory and method for these are constantly intertwined in all research. Thus, what typically comes under 'Method' in background papers is infused with implicit conceptualisation. We carried out 48 interviews in North America, England, Australia, New Zealand, and Eastern and Western Europe. We argue all aspects of these interviews are radically different than is usual for exploratory research in this area. Psychiatry is not central here - it is present only when present in the words of our participants; situated in material and symbolic spaces. We also seek to move away from the individualising therapies of medicines and psychological treatment because they strip participants from their situated realities. Psychiatry enters also because of what it does not do - engage with the life world of its patients. We call then for 'recontextualisation' of madness at all levels. The project was user-led and all researchers had experienced distress and responses to it. Future papers will develop and demonstrate this approach.

Lost in the shadows: reflections on the dark side of co-production.

This article is a response to Oliver et al.'s Commentary 'The dark side of coproduction: do the costs outweigh the benefits for health research?' recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry, as follows: (1) the adoption of a problematically expansive definition of co-production that fails to acknowledge key features that distinguish co-production from broader collaboration; (2) a strong focus on technocratic rationales for co-producing research and a relative neglect of democratic rationales; (3) the transposition of legitimate concerns relating to collaboration between researchers and practitioners onto work with patients, service users and marginalised citizens; and (4) the presentation of bad practice as an inherent flaw, or indeed 'dark side', of co-production without attending to the corrupting influence of contextual factors within academic research that facilitate and even promote such malpractice. The Commentary's limitations can be seen to reflect the contemporary use of the term 'co-production' more broadly. We describe this phenomenon as 'cobiquity' - an apparent appetite for participatory research practice and increased emphasis on partnership working, in combination with the related emergence of a plethora of 'co' words, promoting a conflation of meanings and practices from different collaborative traditions. This phenomenon commonly leads to a misappropriation of the term 'co-production'. Our main motivation is to address this imprecision and the detrimental impact it has on efforts to enable co-production with marginalised and disadvantaged groups. We conclude that Oliver et al. stray too close to 'the problem' of 'co-production' seeing only the dark side rather than what is casting the shadows. We warn against such a restricted view and argue for greater scrutiny of the structural factors that largely explain academia's failure to accommodate and promote the egalitarian and utilitarian potential of co-produced research.

An interpretative phenomenological analysis of the experience of receiving a diagnosis of bi-polar disorder.

Background: Research has shown that receiving a psychiatric diagnosis can have both positive and negative consequences for people. The way in which diagnoses are imparted is an under-researched area and may play an important role in reducing stigma and aiding recovery.Aims: The aim of the present study was to get an in-depth understanding of service users' experience of receiving a diagnosis of bipolar disorder.Methods: Nine service users recently diagnosed with bipolar disorder were interviewed using a semi-structured interview schedule designed to elicit information regarding the positive and negative aspects of receiving their diagnosis. All transcripts were analysed using Interpretative Phenomenological Analysis (IPA).Findings: The findings can be described in terms of three master themes: 1. "Perceived fit between diagnosis and lived experience", 2. "Evaluating the utility of carrying the diagnostic label" and 3. "The role of diagnosis in searching for solutions to one's difficulties".Conclusion: This study draws attention to the importance of evaluating the fit between diagnosis and personal experiences and to the relevance of perceived stigma. The findings also highlight the significance of the client-clinician relationship in establishing fit and instilling hope, which has implications for the acceptance of the diagnosis and engagement with services.

Implementing civic engagement within mental health services in South East Asia: a systematic review and realist synthesis of current evidence.

INTRODUCTION: Civic engagement (CE) has the potential to transform mental health services and could be particularly important for low and middle-income countries (LMICs), which are rapidly developing to respond to the burden of poor mental health. Research from high income countries has found many challenges associated with the meaningful implementation of CE in practice, but this has been underexplored in LIMCS and in South East Asia (SEA) in particular. METHODS: We completed a realist synthesis and systematic review of peer reviewed publications and grey literature to identify the context and actions which promote successful implementation of CE approaches in SEA. We used a theory-driven approach-realist synthesis-to analyse data and develop context-mechanism-outcome configurations that can be used to explain how civic engagement approaches operate in South East Asian contexts. We worked closely with patient and public representatives to guide the review from the outset. RESULTS: Fifty-seven published and unpublished articles were included, 24 were evaluations of CE, including two Randomized Controlled Trials. The majority of CE interventions featured uptake or adaptation of Western models of care. We identified important cultural differences in the enactment of civic engagement in SEA contexts and four mechanisms which, alongside their contextual barriers and facilitators, can be used to explain how civic engagement produces a range of outcomes for people experiencing mental health problems, their families and communities. Our review illustrates how CE interventions can be successfully implemented in SEA, however Western models should be adapted to fit with local cultures and values to promote successful implementation. Barriers to implementation included distrust of services/outside agencies, stigma, paternalistic cultures, limited resource and infrastructure. CONCLUSION: Our findings provide guidance for the implementation of CE approaches within SEA contexts and identify areas for further research. Due to the collectivist nature of many SEA cultures, and the impact of shared traumas on community mental health, CE might best be implemented at community level, with a focus on relational decision making.Registration This review is registered on PROSPERO: CRD42018087841.

Exploring the potential use of patient and public involvement to strengthen Indonesian mental health care for people with psychosis: A qualitative exploration of the views of service users and carers.

BACKGROUND: Patient and public involvement (PPI) has the potential to strengthen mental health systems in Indonesia and improve care for people living with psychosis. Current evidence from other parts of the world demonstrates the need to understand the contexts in which PPI is to be enacted to ensure optimal implementation. OBJECTIVE: To understand service users' and carers' views on the current use and potential applicability of PPI within Indonesian mental health services. DESIGN: Qualitative study incorporating focus groups analysed using thematic analysis. SETTING AND PARTICIPANTS: Participants included 22 service users and 21 carers recruited from two study sites in Indonesia (Jakarta and Bogor). All participants had experience of psychosis either as a service user or carer. RESULTS: Despite the value attributed to PPI in relation to improving services and promoting recovery, current use of such activities in Indonesian mental health services was limited. Participants expressed a desire for greater levels of involvement and more holistic care but felt community organizations were best placed to deliver this because PPI was considered more congruent with the ethos of third-sector organizations. Additional barriers to PPI included stigma and low levels of mental health literacy in both health services and communities. DISCUSSION AND CONCLUSION: Participants felt that there was potential value in the use of PPI within Indonesian mental health services with careful consideration of individual contexts. Future aspirations of involvement enactment should ensure a central design and delivery role for third-sector organizations. Facilitators to global collaborative research in the context of the current study are also discussed.

Public involvement in health outcomes research: lessons learnt from the development of the recovering quality of life (ReQoL) measures.

BACKGROUND: To provide a model for Public involvement (PI) in instrument development and other research based on lessons learnt in the co-production of a recently developed mental health patient reported outcome measure called Recovering Quality of Life (ReQoL). While service users contributed to the project as research participants, this paper focuses on the role of expert service users as research partners, hence referred to as expert service users or PI. METHODS: At every stage of the development, service users influenced the design, content and face validity of the measure, collaborating with other researchers, clinicians and stakeholders who were central to this research. Expert service users were integral to the Scientific Group which was the main decision-making body, and also provided advice through the Expert Service User Group. RESULTS: During the theme and item generation phase (stage 1) expert service users affirmed the appropriateness of the seven domains of the Patient Reported Outcome Measure (activity, hope, belonging and relationships, self-perception, wellbeing, autonomy, and physical health). Expert service users added an extra 58 items to the pool of 180 items and commented on the results from the face and content validity testing (stage 2) of a refined pool of 88. In the item reduction and scale generation phase (stage 3), expert service users contributed to discussions concerning the ordering and clustering of the themes and items and finalised the measures. Expert service users were also involved in the implementation and dissemination of ReQoL (stage 4). Expert service users contributed to the interpretation of findings, provided inputs at every stage of the project and were key decision-makers. The challenges include additional work to make the technical materials accessible, extra time to the project timescales, including time to achieve consensus from different opinions, sometimes strongly held, and extra costs. CONCLUSION: This study demonstrates a successful example of how PI can be embedded in research, namely in instrument development. The rewards of doing so cannot be emphasised enough but there are challenges, albeit surmountable ones. Researchers should anticipate and address those challenges during the planning stage of the project.

Diagnostic performance of the molecular BCR-ABL1 monitoring system may impact on inclusion of CML patients in stopping trials.

In chronic myeloid leukemia (CML), the duration of deep molecular response (MR) before treatment cessation (MR4 or deeper, corresponding to BCR-ABL1 ≤ 0.01% on the International Scale (IS)) is considered as a prognostic factor for treatment free remission in stopping trials. MR level determination is dependent on the sensitivity of the monitoring technique. Here, we compared a newly established TaqMan (TM) and our so far routinely used LightCycler (LC) quantitative reverse transcription (qRT)-PCR systems for their ability to achieve the best possible sensitivity in BCR-ABL1 monitoring. We have comparatively analyzed RNA samples from peripheral blood mononuclear cells of 92 randomly chosen patients with CML resembling major molecular remission (MMR) or better and of 128 CML patients after treatment cessation (EURO-SKI stopping trial). While our LC system utilized ABL1, the TM system is based on GUSB as reference gene. We observed 99% concordance with respect to achievement of MMR. However, we found that 34 of the 92 patients monitored by TM/GUSB were re-classified to the next inferior MR log level, especially when LC/ABL1-based results were borderline to thresholds. Thirteen patients BCR-ABL1 negative in LC/ABL1 became positive after TM/GUSB analysis. In the 128 patients included in the EURO-SKI trial identical molecular findings were achieved for 114 patients. However, 14 patients were re-classified to the next inferior log-level by the TM/GUSB combination. Eight of these patients relapsed after treatment cessation; two of them were re-classified from MR4 to MMR and therefore did not meet inclusion criteria anymore. In conclusion, we consider both methods as comparable and interchangeable in terms of achievement of MMR and of longitudinal evaluation of clinical courses. However, in LC/ABL1 negative samples, slightly enhanced TM/GUSB sensitivity may lead to inferior classification of clinical samples in the context of TFR.

Protocol for a quasi-experimental study of the effectiveness and cost-effectiveness of mother and baby units compared with general psychiatric inpatient wards and crisis resolution team services (The ESMI study) in the provision of care for women in the postpartum period.

INTRODUCTION: Research into what constitutes the best and most effective care for women with an acute severe postpartum mental disorder is lacking. The effectiveness and cost-effectiveness of psychiatric mother and baby units (MBUs) has not been investigated systematically and there has been no direct comparison of the outcomes of mothers and infants admitted to these units, compared with those accessing generic acute psychiatric wards or crisis resolution teams (CRTs). Our primary hypothesis is that women with an acute psychiatric disorder, in the first year after giving birth, admitted to MBUs are significantly less likely to be readmitted to acute care (an MBU, CRTs or generic acute ward) in the year following discharge than women admitted to generic acute wards or cared for by CRTs. METHODS AND ANALYSIS: Quasi-experimental study of women accessing different types of acute psychiatric services in the first year after childbirth. Analysis of the primary outcome will be compared across the three service types, at 1-year postdischarge. Cost-effectiveness will be compared across the three service types, at 1-month and 1-year postdischarge; explored in terms of quality-adjusted life years. Secondary outcomes include unmet needs, service satisfaction, maternal adjustment, quality of mother-infant interaction. Outcomes will be analysed using propensity scoring to account for systematic differences between MBU and non-MBU participants. Analyses will take place separately within strata, defined by the propensity score, and estimates pooled to produce an average treatment effect with weights to account for cohort attrition. ETHICS AND DISSEMINATION: The study has National Health Service (NHS) Ethics Approval and NHS Trust Research and Development approvals. The study has produced protocols on safeguarding maternal/child welfare. With input from our lived experience group, we have developed a dissemination strategy for academics/policy-makers/public.

Changing nurses' views of the therapeutic environment: randomised controlled trial.

BACKGROUND: Although patients value evidence-based therapeutic activities, little is known about nurses' perceptions.AimsTo investigate whether implementing an activities training programme would positively alter staff perceptions of the ward or be detrimental through the increased workload (trial registration: ISRCTN 06545047). METHOD: We conducted a stepped wedge cluster randomised trial involving 16 wards with psychology-led nurse training as the intervention. The main outcome was a staff self-report measure of perceptions of the ward (VOTE) and secondary outcomes measuring potential deterioration were the Index of Work Satisfaction (IWS) and the Maslach Burnout Inventory (MBI). Data were analysed using mixed-effects regression models, with repeated assessments from staff over time. RESULTS: There were 1075 valid outcome measurements from 539 nursing staff. VOTE scores did not change over time (standardised effect size 0.04, 95% CI -0.09 to 0.18, P = 0.54), neither did IWS or MBI scores (IWS, standardised effect size 0.02, 95% CI -0.11 to 0.16, P = 0.74; MBI standardised effect size -0.09, 95% CI -0.24 to 0.06, P = 0.24). There was a mean increase of 1.5 activities per ward (95% CI -0.4 to 3.4, P = 0.12) and on average 6.3 more patients attended groups (95% CI -4.1 to 16.6, P = 0.23) following training. Staff feedback on training was positive. CONCLUSIONS: Our training programme did not change nurses' perceptions of the ward, job satisfaction or burnout. During the study period many service changes occurred, most having a negative impact through increased pressure on staffing, patient mix and management so it is perhaps unsurprising that we found no benefits or reduction in staff skill.Declaration of interestNone.

Improving recruitment to healthcare research studies: clinician judgements explored for opting mental health service users out of the time to change viewpoint survey.

BACKGROUND: There are significant challenges across the research pathway, including participant recruitment. This paper aims to explore the impact of clinician recruitment decision-making on sampling for a national mental health survey. METHOD: Clinical teams in 20 English mental healthcare provider organisations screened caseload lists, opting-out people whom, in their judgement, should not be approached to participate in a survey about stigma and discrimination. The reasons for each individual opted-out were requested. We assess these reasons against study recruitment criteria and investigated the impact of variations in opt-out rates on response rates and study findings. RESULTS: Over 4 years (2009-2012), 37% (28,592 people) of the total eligible sampling frame were excluded. Exclusions comprised three categories: clinical teams did not screen their lists within recruitment period (12,392 people: 44%); protocol-specified exclusions (8364 people: 29%); clinician opt-outs queried by research team (other reasons were given) (7836, 28%). Response rates were influenced by decision-making variations. CONCLUSIONS: Large numbers of people were denied the opportunity to choose for themselves whether to participate or not in the Viewpoint Survey. The clinical research community, and their employing organisations, require support to better understand the value of research and best practice for research recruitment.

Power, Privilege and Knowledge: the Untenable Promise of Co-production in Mental "Health".

This paper examines the concept and practice of coproduction in mental health. By analyzing personal experience as well as the historical antecedents of coproduction, we argue that the site of coproduction is defined by the legacy of the Enlightenment and its notions of "reason" and "the cognitive subject." We show the enduring impact of these notions in producing and perpetuating the power dynamics between professionals, researchers, policy makers and service users within privileged sites of knowledge production, whereby those deemed to lack reason-the mad and the racialized mad in particular-and their knowledge are radically inferiorised. Articulating problems in what is considered knowledge and methods of knowing, we argue that modern "psy" sciences instantiates the privilege of reason as well as of whiteness. We then examine how the survivor movement, and the emergent survivor/mad knowledge base, duplicates white privilege even as it interrogates privileges of reason and cognition. Describing how we grapple with these issues in an ongoing project-EURIKHA-which aims to map the knowledge produced by service users, survivors and persons with psychosocial disabilities globally, we offer some suggestions. Coproduction between researchers, policy makers and those of us positioned as mad, particularly as mad people of color, we argue, cannot happen in knowledge production environments continuing to operate within assumptions and philosophies that privilege reason as well as white, Eurocentric thinking. We seek not to coproduce but to challenge and change thinking and support for psychosocial suffering in contexts local to people's lives.

The Role of Two Human Milk Oligosaccharides, 2′-Fucosyllactose and Lacto-N-Neotetraose, in Infant Nutrition / 대한소아소화기영양학회지

Human breast milk contains numerous biomolecules. Human milk oligosaccharides (HMOs) are the third most abundant component of breast milk, after lactose and lipids. Amongst the synthetized HMOs, 2′-fucosyllactose (2′-FL) and lacto-N-neotetraose (LNnT) are widely studied and are considered safe for infant nutrition. Several studies have reported the health benefits of HMOs, which include modulation of the intestinal microbiota, anti-adhesive effect against pathogens, modulation of the intestinal epithelial cell response, and development of the immune system. The amount and diversity of HMOs are determined by the genetic background of the mothers (HMO secretors or non-secretors). The non-secretor mothers secrete lower HMOs than secretor mothers. The breastfed infants of secretor mothers gain more health benefit than those of non-secretor mothers. In conclusion, supplementation of infant formula with 2′-FL and LNnT is a promising innovation for infant nutrition.

Exploring the potential of civic engagement to strengthen mental health systems in Indonesia (IGNITE): a study protocol.

BACKGROUND: Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. More than 90% of people with mental illness do not get any treatment and tens of thousands of people with psychosis are illegally detained ('pasung') in the family home. Civic engagement, a core part of the recent World Health Organisation global strategy, has the potential to address some of these challenges through the development of person-centered models of care. The aim of the study is to develop a testable systems level, culturally appropriate, civic engagement framework for use in Jakarta and Bogor, Indonesia to strengthen local mental health services. METHODS: A mixed methods study underpinned by a realist approach will be undertaken across four phases in two study sites in Indonesia (Jakarta and Bogor). Phase 1 will explore the use of civic engagement across South East Asia by conducting a systematic review of existing evidence. By surveying 300 mental health professionals, phase 2 will identify the stakeholders, the sources of collaboration and the evidence used by professionals in decision making within local mental health systems and identify potential opportunities for civic engagement within the system. In order to explore the potential use of civic engagement within Indonesian mental health services and identify priorities for a culturally appropriate framework, phase 3 will undertake two focus groups with participants with experience of psychosis or caring for someone with psychosis (n = 20-30). Professionals and other key decision makers in a range of roles across the system at a national (n = 5) and local level (n = 10-15/site) will also take part in semi-structured interviews. Phase 4 will co-produce a civic engagement framework for use in Indonesia by synthesising evidence from phases 1-3 collaboratively with key stakeholders. DISCUSSION: Civic engagement is a potential way in which health services in low and middle income countries can address the burden of mental health conditions through the development of person-centred models of care. However, such approaches are underexplored in Indonesia. This study will work with local stakeholders to design a testable civic engagement framework for use in mental health services in Indonesia.

Participatory research: real or imagined.

BACKGROUND: Participatory research has as a central tenet that power relations between researcher and researched be reduced. In the last 20 years, a substantial literature has demonstrated the difficulties inherent in this as well as the troublesome nature of certain central concepts. AIMS: (1) To describe and illustrate a new form of participatory research where the researchers share at least something with the participants in the research. That is, all are users of mental health services. (2) To reflect on the novel form of participatory research in terms of whether it shares, mitigates or avoids some of the difficulties of more traditional forms and to pose the question: what is a mental health community? RESULTS: The model described is new in that the researchers have a different status than in conventional participatory research. But it is illuminated by and itself illuminates issues of power relations in research and difficulties in reducing that; gatekeepers and the exclusion of crucial groups of service users; the confusion of demographic representativeness with the silencing of marginalized perspectives; coming out of the academic space and the shifting issue of what counts as 'communities' in mental health. CONCLUSION: The examples given are moderate in scale and relevant to social psychiatry. Yet they may change methods and the definition of participatory research and at the same time be vitiated by but also illuminate dilemmas already identified in the literature albeit in different formations.

The importance of content and face validity in instrument development: lessons learnt from service users when developing the Recovering Quality of Life measure (ReQoL).

PURPOSE: Service user involvement in instrument development is increasingly recognised as important, but is often not done and seldom reported. This has adverse implications for the content validity of a measure. The aim of this paper is to identify the types of items that service users felt were important to be included or excluded from a new Recovering Quality of Life measure for people with mental health difficulties. METHODS: Potential items were presented to service users in face-to-face structured individual interviews and focus groups. The items were primarily taken or adapted from current measures and covered themes identified from earlier qualitative work as being important to quality of life. Content and thematic analysis was undertaken to identify the types of items which were either important or unacceptable to service users. RESULTS: We identified five key themes of the types of items that service users found acceptable or unacceptable; the items should be relevant and meaningful, unambiguous, easy to answer particularly when distressed, do not cause further upset, and be non-judgemental. Importantly, this was from the perspective of the service user. CONCLUSIONS: This research has underlined the importance of service users' views on the acceptability and validity of items for use in developing a new measure. Whether or not service users favoured an item was associated with their ability or intention to respond accurately and honestly to the item which will impact on the validity and sensitivity of the measure.