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.

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.

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.

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.

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.

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.

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.

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.

"This is not a Life Anyone would want"-A Qualitative Study of Norwegian ACT Service users' Experience with Mental Health Treatment.

We discuss Norwegian service users' experiences with community mental health treatment in general, and the interprofessional Assertive Community Treatment (ACT) model in particular. To gain the right to treatment, service users have to accept certain limitations, such as medication and community treatment orders (CTOs). Seventy participants responded to five open-ended questions. In addition, eight of them participated in either focus group or interviews. A collaborative approach, using Stepwise-Deductive Induction (SDI) method was used to analyze the participants' experiences. The results showed that the treatment contributes to an experience of autonomy but also one of restriction. It provides service users with enhanced normalcy, but simultaneously a feeling of deviance. There needs to be an ongoing reflection and discussion about those paradoxes in treatment, and service users have to be involved.

Evidence for effective interventions to reduce mental-health-related stigma and discrimination.

Stigma and discrimination in relation to mental illnesses have been described as having worse consequences than the conditions themselves. Most medical literature in this area of research has been descriptive and has focused on attitudes towards people with mental illness rather than on interventions to reduce stigma. In this narrative Review, we summarise what is known globally from published systematic reviews and primary data on effective interventions intended to reduce mental-illness-related stigma or discrimination. The main findings emerging from this narrative overview are that: (1) at the population level there is a fairly consistent pattern of short-term benefits for positive attitude change, and some lesser evidence for knowledge improvement; (2) for people with mental illness, some group-level anti-stigma inventions show promise and merit further assessment; (3) for specific target groups, such as students, social-contact-based interventions usually achieve short-term (but less clearly long-term) attitudinal improvements, and less often produce knowledge gains; (4) this is a heterogeneous field of study with few strong study designs with large sample sizes; (5) research from low-income and middle-income countries is conspicuous by its relative absence; (6) caution needs to be exercised in not overgeneralising lessons from one target group to another; (7) there is a clear need for studies with longer-term follow-up to assess whether initial gains are sustained or attenuated, and whether booster doses of the intervention are needed to maintain progress; (8) few studies in any part of the world have focused on either the service user's perspective of stigma and discrimination or on the behaviour domain of behavioural change, either by people with or without mental illness in the complex processes of stigmatisation. We found that social contact is the most effective type of intervention to improve stigma-related knowledge and attitudes in the short term. However, the evidence for longer-term benefit of such social contact to reduce stigma is weak. In view of the magnitude of challenges that result from mental health stigma and discrimination, a concerted effort is needed to fund methodologically strong research that will provide robust evidence to support decisions on investment in interventions to reduce stigma.

Costs of the police service and mental healthcare pathways experienced by individuals with enduring mental health needs.

BACKGROUND: Substantial policy, communication and operational gaps exist between mental health services and the police for individuals with enduring mental health needs. AIMS: To map and cost pathways through mental health and police services, and to model the cost impact of implementing key policy recommendations. METHOD: Within a case-linkage study, we estimated 1-year individual-level healthcare and policing costs. Using decision modelling, we then estimated the potential impact on costs of three recommended service enhancements: street triage, Mental Health Act assessments for all Section 136 detainees and outreach custody link workers. RESULTS: Under current care, average 1-year mental health and police costs were £10 812 and £4552 per individual respectively (n = 55). The cost per police incident was £522. Models suggested that each service enhancement would alter per incident costs by between -8% and +6%. CONCLUSIONS: Recommended enhancements to care pathways only marginally increase individual-level costs.

Aerosol Chemistry Resolved by Mass Spectrometry: Linking Field Measurements of Cloud Condensation Nuclei Activity to Organic Aerosol Composition.

Aerosol hygroscopic properties were linked to its chemical composition by using complementary online mass spectrometric techniques in a comprehensive chemical characterization study at a rural mountaintop station in central Germany in August 2012. In particular, atmospheric pressure chemical ionization mass spectrometry ((-)APCI-MS) provided measurements of organic acids, organosulfates, and nitrooxy-organosulfates in the particle phase at 1 min time resolution. Offline analysis of filter samples enabled us to determine the molecular composition of signals appearing in the online (-)APCI-MS spectra. Aerosol mass spectrometry (AMS) provided quantitative measurements of total submicrometer organics, nitrate, sulfate, and ammonium. Inorganic sulfate measurements were achieved by semionline ion chromatography and were compared to the AMS total sulfate mass. We found that up to 40% of the total sulfate mass fraction can be covalently bonded to organic molecules. This finding is supported by both on- and offline soft ionization techniques, which confirmed the presence of several organosulfates and nitrooxy-organosulfates in the particle phase. The chemical composition analysis was compared to hygroscopicity measurements derived from a cloud condensation nuclei counter. We observed that the hygroscopicity parameter (κ) that is derived from organic mass fractions determined by AMS measurements may overestimate the observed κ up to 0.2 if a high fraction of sulfate is bonded to organic molecules and little photochemical aging is exhibited.

Defining continuity of care from the perspectives of mental health service users and professionals: an exploratory, comparative study.

BACKGROUND: Continuity of care (COC) is central to the organization and delivery of mental health services. Traditional definitions have excluded service users, and this lack of involvement has been linked to poor conceptual clarity surrounding the term. Consequently, very little is known about the differences and similarities in the conceptualization of COC by mental health service users and professionals. OBJECTIVE: To explore and compare mental health service users' and professionals' definitions of COC. METHODS: Using an exploratory, qualitative design, five focus groups with 32 service users each met twice. Data were analysed thematically to generate a service user-defined model of COC. In a cross-sectional survey, health and social care professionals (n = 184) defined COC; responses were analysed thematically. Service user and professional definitions were conceptually mapped and compared to identify similarities and differences. RESULTS: There was crossover between the service user and professional derived models of COC. Both contained temporal, quality, systemic, staff, hospital and needs-related elements of COC. Service users prioritized access, information, peer support and avoiding services; health professionals most frequently referred to staff, cross-sectional and temporal COC. Service users alone identified service avoidance, peer support and day centres as COC elements; professionals alone identified cross-sectional working. CONCLUSIONS: Important similarities and differences exist in service user and professional conceptualizations of COC. Further research is necessary to explore these differences, prior to integrating service user and professional perspectives in a validated COC framework which could enable the development and evaluation of interventions to improve COC, informing policy and practice.

Barriers to shared decision making in mental health care: qualitative study of the Joint Crisis Plan for psychosis.

BACKGROUND: Despite increasing calls for shared decision making (SDM), the precise mechanisms for its attainment are unclear. Sharing decisions in mental health care may be especially complex. Fluctuations in service user capacity and significant power differences are particular barriers. OBJECTIVE AND DESIGN: We trialled a form of facilitated SDM that aimed to generate patients' treatment preferences in advance of a possible relapse. The 'Joint Crisis Plan' (JCP) intervention was trialled in four mental health trusts in England between 2008 and 2011. This qualitative study used grounded theory methods to analyse focus group and interview data to understand how stakeholders perceived the intervention and the barriers to SDM in the form of a JCP. RESULTS: Fifty service users with psychotic disorders and 45 clinicians participated in focus groups or interviews between February 2010 and November 2011. Results suggested four barriers to clinician engagement in the JCP: (i) ambivalence about care planning; (ii) perceptions that they were 'already doing SDM'; (iii) concerns regarding the clinical 'appropriateness of service users' choices'; and (iv) limited 'availability of service users' choices'. Service users reported barriers to SDM in routine practice, most of which were addressed by the JCP process. Barriers identified by clinicians led to their lack of constructive engagement in the process, undermining the service users' experience. CONCLUSIONS: Future work requires interventions targeted at the engagement of clinicians addressing their concerns about SDM. Particular strategies include organizational investment in implementation of service users' choices and directly training clinicians in SDM communication processes.

Predicting psychiatric inpatient costs.

PURPOSE: A large proportion of mental health costs is inpatient care but little is known about their variation between patients. The aim of this study was to measure and identify the predictors of costs of staff contacts and activities on inpatient wards. METHOD: Inpatients from psychiatric hospital wards in south London were interviewed in 2008 and 2009 and staff contacts and use of activities recorded over a week and costs calculated. Regression analyses identified predictors. RESULTS: Of 334 participants, 78% used activities and 90% had staff contacts. However, 41% reported no nurse contact. Mean staff contact and activity costs were £197 and £30 per week, respectively. Staff contact costs were inversely related to age, and activity costs were higher for patients with higher levels of education. Patient satisfaction was positively associated with both costs. CONCLUSIONS: The costs of self-reported staff contacts and use of activities account for a small amount of total inpatient costs. Patients with higher costs appeared to have higher levels of satisfaction.

The Feasibility and Acceptability to Service Users of CIRCuiTS, a Computerized Cognitive Remediation Therapy Programme for Schizophrenia.

BACKGROUND: Cognitive remediation (CR) is a psychological therapy, effective in improving cognitive performance and functioning in people with schizophrenia. As the therapy becomes more widely implemented within mental health services its longevity and uptake is likely to depend on its feasibility and acceptability to service users and clinicians. AIMS: To assess the feasibility and acceptability of a new strategy-based computerized CR programme (CIRCuiTS) for people with psychosis. METHOD: Four studies were conducted using mixed methods. Perceptions of attractiveness, comprehensibility, acceptability and usability were assessed using self-report questionnaires in 34 non-clinical participants (study 1), and five people with a schizophrenia diagnosis and three experienced CR therapists (studies 2 and 3). The ease with which pre-specified therapy programmes could be assembled was also assessed by three therapists (Study 2). Finally, the satisfaction of 20 service users with a diagnosis of schizophrenia regarding their experience of using CIRCuiTS in the context of a course of the CR therapy was assessed in a qualitative interview study (study 4). RESULTS: Ratings of perceived attractiveness, comprehensibility, acceptability and usability consistently exceeded pre-set high targets by non-clinical, clinical and therapist participants. Qualitative analysis of satisfaction with CIRCuiTS showed that receiving the therapy was generally seen to be a positive experience, leading to perceptions that cognitive functioning had improved and attempts to incorporate new strategy use into daily activities. CONCLUSIONS: CIRCuiTS demonstrates high acceptability and ease of use for both service users with a schizophrenia diagnosis and clinicians.

Design in mind: eliciting service user and frontline staff perspectives on psychiatric ward design through participatory methods.

BACKGROUND: Psychiatric ward design may make an important contribution to patient outcomes and well-being. However, research is hampered by an inability to assess its effects robustly. This paper reports on a study which deployed innovative methods to capture service user and staff perceptions of ward design. METHOD: User generated measures of the impact of ward design were developed and tested on four acute adult wards using participatory methodology. Additionally, inpatients took photographs to illustrate their experience of the space in two wards. Data were compared across wards. RESULTS: Satisfactory reliability indices emerged based on both service user and staff responses. Black and minority ethnic (BME) service users and those with a psychosis spectrum diagnosis have more positive views of the ward layout and fixtures. Staff members have more positive views than service users, while priorities of staff and service users differ. Inpatient photographs prioritise hygiene, privacy and control and address symbolic aspects of the ward environment. CONCLUSIONS: Participatory and visual methodologies can provide robust tools for an evaluation of the impact of psychiatric ward design on users.

Service user led organisations in mental health today.

BACKGROUND: Since 1990, health policy in England has stressed the importance of user involvement in shaping and delivering services. AIMS: To explore mental health service user-led organisations (ULOs) in England, as they interact with decision-makers to bring about change desired by them with a focus on institutional norms behaviour and specialised knowledge impacting service users' relationships with services. METHOD: An ethnography of five ULOs in two provider organisations (NHS Trusts) including observing their meetings and interactions with decision-makers, conducting in-depth interviews and collecting reflective diaries kept by two members of each group. RESULTS: During the study, one group ceased to operate. This was a group which refused to adopt the institutional rules and norms of managerial discourse. The other four groups survived by navigating the changing environment which existed at the time of the study, although often at some cost. Themes of autonomy and leadership were also identified. CONCLUSION: The current environment is one of the organisational complexity and change and the place of ULOs is an ambiguous one as they strive to maintain autonomy whilst at the same time being an acceptable voice to managers.

Electronic personal health records for people with severe mental illness; a feasibility study.

BACKGROUND: Electronic Patient Health Records (ePHRs) contain information created, accessed, monitored and maintained by patients. This paper describes how an ePHR called myhealthlocker™ was used by people with severe mental illness to monitor and input their own health-related outcomes, and whether they derived any benefit from it. METHOD: Individuals using local secondary mental health services were provided with access to myhealthlocker, an ePHR which allowed them to monitor their health and input information from Patient Reported Outcome Measures (PROMs) across to their clinical record. Participants were given support to use myhealthlocker through drop-in sessions facilitated by an Occupational Therapist. Usage of the site was monitored over time. Surveys and interviews were used to investigate what participants thought about the intervention. RESULTS: 32 of 58 participants used the ePHR (where usage was defined by logging in at least twice and completing a PROM). Almost all participants who used the site had been referred from community rather than inpatient services. Of those who used the site, 26 out of 32 used it primarily or exclusively through supported drop-in sessions. Almost half of those participants who used the site had used it outside the drop-in sessions. Those who used the site found it useful (n = 32), and most said they would continue to use it (n = 27). There were no apparent differences in usage across gender, diagnosis, and length of service use history. Suggestions for improvement included a social networking component, and finding ways to engage clinicians. In particular, users valued the ability to monitor health outcomes over time. CONCLUSIONS: People with severe mental illness were able to use an ePHR and derive benefit from monitoring and inputting PROMs. Those who use the site are more likely to have been referred from community mental health services, and then supported to access the ePHR.