Power to the people? A co-produced critical review of service user involvement in mental health professions education.

Meaningful service user involvement in health professions education requires integrating knowledge held by "lay" people affected by health challenges into professional theories and practices. Involving service users redefines whose knowledge "counts" and implies a shift in power. Such a shift is especially significant in the mental health field, where power imbalances between health professionals and service users are magnified. However, reviews of the literature on service user involvement in mental health professional education do little to explore how power manifests in this work. Meanwhile critical and Mad studies scholars have highlighted that without real shifts in power, inclusion practices can lead to harmful consequences. We conducted a critical review to explore how power is addressed in the literature that describes service user involvement in mental health professions education. Our team used a co-produced approach and critical theories to identify how power implicitly and explicitly operates in this work to unearth the inequities and power structures that service user involvement may inadvertently perpetuate. We demonstrate that power permeates service user involvement in mental health professional education but is rarely made visible. We also argue that by missing the opportunity to locate power, the literature contributes to a series of epistemic injustices that reveal the contours of legitimate knowledge in mental health professions education and its neoliberal underpinnings. Ultimately, we call for a critical turn that foregrounds power relations to unlock the social justice-oriented transformative potential of service user involvement in mental health professions education and health professions education more broadly.

From a Single Voice to Diversity: Reframing 'Representation' in Patient Engagement.

There has been a growing emphasis on consumer representation in the development of health policy, services, research, and education. Existing literature has critiqued how discourses of representativeness can disempower consumers working in health systems. The context of the current study is consumer engagement in the development of COVID-19 triage policy and practice in a local health service. Consumer engagement has often been an afterthought in the COVID response, with few examples of consumers in agenda-setting or decision-making roles. In the Australian Capital Territory, 26 consumer, carer, and community groups worked together with academics and clinicians to develop these principles. Interviews were conducted with stakeholders (including consumers, clinicians, and other health professionals) to evaluate the development of triage principles. A discursive psychological approach to analysis was used to explore participants' understandings about and constructions of consumers being representative (or not) and how this may reproduce power imbalances against consumers. The results explore two distinct ways in which participants talked about consumer representativeness: the first drawing on rhetoric about consumers as lay members of the public (as distinct from being professionally engaged in the health sector), and the second in terms of consumer representatives being diverse and having intersectional identities and experiences. Expectations about consumers to be representative of the general population may reproduce traditional power imbalances and silence lived experience expertise. These power imbalances may be challenged by a shift in the way representativeness is conceptualised to requiring health services to seek out diverse and intersectionally marginalised consumers.

"Come and share your story and make everyone cry": complicating service user educator storytelling in mental health professional education.

It has become relatively common practice within health professional education to invite people who have used mental health and social care services (or service user educators) to share their stories with health professional learners and students. This paper reports on findings from a postcritical ethnographic study of the practice of service user involvement (SUI), in which we reflexively inquired into conceptualizations of service user educators' knowledge contributions to health professional education in the accounts of both service user- and health professional educators. This research was conducted in response to recent calls for greater scrutiny surrounding the risks, challenges, and complexities inherent in involving service users in health professional education spaces. 'Story/telling' was identified as a pronounced overarching construct in our analysis, which focuses on participants' reports of both the obvious and more subtle tensions and complexities they experience in relation to storytelling as a predominant tool or approach to SUI. Our findings are presented as three distinct, yet overlapping, themes related to these complexities or tensions: (a) performative expectations; (b) the invisible work of storytelling; and (c) broadening conceptualizations of service user educators' knowledge. Our findings and discussion contribute to a growing body of literature which problematizes the uncritical solicitation of service user educators' stories in health professional education and highlights the need for greater consideration of the emotional and epistemic labour expected of those who are invited to share their stories. This paper concludes with generative recommendations and reflexive prompts for health professional educators seeking to engage service user educators in health professional education through the practice of storytelling.

Involvement of people who use alcohol and other drug services in the development of patient-reported measures of experience: A scoping review.

INTRODUCTION: Patient-reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. METHODS: PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple-item measure of patient-reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. RESULTS: Thirty measures-23 satisfaction and 7 experience-were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction-specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. CONCLUSION: Several gaps could be addressed to enhance the measurement of patient-centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. PATIENT OR PUBLIC CONTRIBUTION: This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer-based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer-based AOD consumer organisation is involved as a co-author of this scoping review.

Cracks that Let the Light in: Collective Reflections on Integrating Lived Experience of Psychosis in Research and Policy in the Context of a Global Commission.

Within psychiatric research fields, there has been a marked uptick of interest in service user involvement in recent years. Nevertheless, it is often unclear how robust or impactful common forms of inclusion are, and the extent to which they have included individuals with psychosis. Using collective auto-ethnography, this paper describes the experiences of 8 academic and non-academic members of the 'lived experience' and participatory research workgroup of a global psychosis Commission and our navigation of power and power hierarchies, differences in background and training, and multiple vectors of identity, diversity, and privilege. We conclude that the realities of "involvement" are much messier, more fraught, and less intrinsically empowering than often signaled in calls for involvement and co-production. We nevertheless stress the power of collective dialogue and support-between and among a pluralistic group-and of honesty and transparency about challenges, barriers, and the colonial underpinnings and geopolitics of global mental health.

Developing online simulated practice placements: a case study.

The Nursing and Midwifery Council recognises that using simulated practice learning within the pre-registration nursing curriculum is a valuable way for students to develop nursing knowledge and skills. The University of Huddersfield developed simulated placements in the pre-registration nursing curriculum in 2021. Simulated placements are now embedded within all fields of the BSc and MSc programmes, providing structured, innovative learning experiences that embrace online technology in supporting the development of skills and knowledge relevant to all fields of nursing. Developing these placements has provided an opportunity for faculty staff to work collaboratively with clinical colleagues, service users and carers, academics and technologists. This article offers an overview of that work, addressing challenges, operational issues, and insight into some of the activities developed to support students' learning.

Experiences of service transitions in Australian early intervention psychosis services: a qualitative study with young people and their supporters.

BACKGROUND: Different Early Intervention Psychosis Service (EIPS) models of care exist, but many rely upon community-based specialist clinical teams, often with other services providing psychosocial care. Time-limited EIPS care creates numerous service transitions that have potential to interrupt continuity of care. We explored with young people (YP) and their support people (SP) their experiences of these transitions, how they affected care and how they could be better managed. METHODS: Using purposive sampling, we recruited twenty-seven YP, all of whom had been hospitalised at some stage, and twelve SP (parents and partners of YP) from state and federally funded EIPS in Australia with different models of care and integration into secondary mental health care. Audio-recorded interviews were conducted face-to-face or via phone. A diverse research team (including lived experience, clinician and academic researchers) used an inductive thematic analysis process. Two researchers undertook iterative coding using NVivo12 software, themes were developed and refined in ongoing team discussion. RESULTS: The analysis identified four major service-related transitions in a YP's journey with the EIPS that were described as reflecting critical moments of care, including: transitioning into EIPS; within service changes; transitioning in and out of hospital whilst in EIPS care; and, EIPS discharge. These service-related transition affected continuity of care, whilst within service changes, such as staff turnover, affected the consistency of care and could result in information asymmetry. At these transition points, continuity of care, ensuring service accessibility and flexibility, person centredness and undertake bio-psychosocial support and planning were recommended. State and federally funded services both had high levels of service satisfaction, however, there was evidence of higher staff turnover in federally funded services. CONCLUSION: Service transitions were identified as vulnerable times in YP and SP continuity of care. Although these were often well supported by the EIPS, participants provided illustrative examples for service improvement. These included enhancing continuity and consistency of care, through informed and supportive handovers when staff changes occur, and collaborative planning with other services and the YP, particularly during critical change periods such as hospitalisation.

Patient and public involvement in hearing research: opportunities, impact and reflections with case studies from the Manchester Centre for Audiology and Deafness.

OBJECTIVE: Patient and public involvement (PPI) in research improves relevance to end users and improves processes including recruitment participants. PPI in our research has gone from being non-existent to ubiquitous over a few years. We provide critical reflections on the benefits and challenges of PPI. DESIGN: Case studies are reported according to a modified GRIP2 framework; the aims, methodology, impact of PPI and critical reflections on each case and our experiences with PPI in general. STUDY SAMPLE: We report five UK projects that included PPI from teenagers, families, people living with dementia, autistic people, and people from South Asian and d/Deaf communities. RESULTS: Our experience has progressed from understanding the rationale to grappling methodologies and integrating PPI in our research. PPI took place at all stages of research, although commonly involved input to design including recruitment and development of study materials. Methodologies varied between projects, including PPI co-investigators, advisory panels and online surveys. CONCLUSION: On-going challenges include addressing social exclusion from research for people that lack digital access following increasing on-line PPI and involvement from underserved communities. PPI was initially motivated by funders; however the benefits have driven widespread PPI, ensuring our research is relevant to people living with hearing loss.

Evaluation of an Advocacy Programme for Mental Health Care Users in South Africa: A Mixed Methods Study.

This study evaluates the implementation of a national advocacy programme for mental health care users, conducted by the South African National Department of Health and the South African Federation for Mental Health. Semi-structured interviews were conducted with care users (n = 18), service providers (n = 9), support persons (n = 6), NGO directors (n = 4), and programme managers in the DoH (n = 4). Although informational benefits were highlighted from programme empowerment sessions, very few advocacy groups were subsequently established. Barriers to establishing and conducting advocacy groups included a lack of follow-up support, pervasive stigma from communities and health care workers, low self-confidence, and a lack of financial resources. Facilitators for establishment of groups included conducting empowerment sessions and identifying 'mental health champions' at clinics, improving mental health training for health workers, dispensing psychiatric medication to patients on the same day, providing funding for non-governmental organisations, conducting national awareness campaigns, and establishing holistic rehabilitation centres for care users.

Treating alcohol use disorder in the absence of specialized services - evaluation of the moving inpatient Treatment Camp approach in Uganda.

BACKGROUND: The gap between service need and service provision for alcohol-related disorders is highest in resource-poor countries. However, in some of these contexts, local initiatives have developed pragmatic interventions that can be carried out with limited specialized personnel. In an uncontrolled treatment study, we aimed to evaluate the feasibility, acceptability, safety, costs and potential effects of an innovative locally developed community-based program (the Treatment Camp) that is based on an inpatient clinic that moves from community to community. METHODS: Out of 32 treatment-seeking individuals 25 took part in the one-week Treatment Camp that included detoxification and counseling components. Re-assessments took place 5 and 12 months after their participation. We explored the course of a wide range of alcohol-related indicators, using the Alcohol Use Disorders Identification Test (AUDIT) as primary outcome complemented by a timeline follow-back approach and the Obsessive Compulsive Drinking Scale. Additionally, we assessed impaired functioning, alcohol-related stigmatization, symptoms of common mental health disorders and indicators of family functioning as reported by participants' wives and children. RESULTS: All alcohol-related measures decreased significantly after the Treatment Camp and remained stable up to the 12-month-assessment with high effect sizes ranging from 0.89 to 3.49 (Hedges's g). Although 92% of the participants had lapsed at least once during the follow-up period, 67% classified below the usually applied AUDIT cutoff for hazardous drinking (≥ 8) and no one qualified for the dependent range (≥ 20) one year after treatment. Most secondary outcomes including impaired functioning, alcohol-related stigmatization, symptoms of depression and indicators of family functioning followed the same trajectory. CONCLUSIONS: We found the Treatment Camp approach to be acceptable, feasible, safe and affordable (approx. 111 USD/patient) and we could obtain preliminary evidence of its efficacy. Due to its creative combination of inpatient treatment and monitoring by medical personnel with local mobility, the Treatment Camp appears to be more accessible and inclusive than other promising interventions for alcohol dependent individuals in resource-poor contexts. Effects of the approach seem to extend to interactions within families, including a reduction of dysfunctional and violent interactions.

Our roles are not at ease: The work of engaging a youth advisory council in a mental health services delivery organization.

OBJECTIVES: There is growing policy impetus for including youth voices in health services research and health system reform. This article examines the perspectives of professionals in a mental healthcare organization charged with engaging young people as advisors in service transformation. METHODS: An institutional ethnography of a youth mental health services organization in Ontario, Canada, was conducted. Fieldwork consisted of twelve months of observation of meetings, interviews with youth advisors and adult service providers, with subsequent text analysis of engagement training and policy materials. The present article reports data from six adult professionals and related field observations. RESULTS: Service providers' efforts to engage youth were observed in three areas: a) supporting youth's development as advisors, b) retaining and deepening youth participation while waiting for organizational change and c) embedding relationships between youth and adults at various levels within the system of care. This work denotes existing tensions between the values and ideals of youth engagement and the everyday demands of services delivery. CONCLUSION: In this setting, a fundamental dimension of this work consisted of negotiating tensions between the policy enthusiasm for engagement and its realization in a health services context. In describing these contextual challenges, we outline implications for consideration by other youth mental health services. Engagement efforts that are authentic and sustained require resources and flexibility, and leadership commitment to instil service users' perspectives throughout multiple levels within the organization.

Communities, health-care organizations and the contingencies and contradictions of engagement: A case study from Chile.

CONTEXT: Despite a growing interest in service-user involvement in mental health services, the interaction between health institutions and local groups is only beginning to receive attention, particularly in global south settings. OBJECTIVE: Looking at a participatory initiative in Chile, this study explores how, under unfavourable administrative conditions, health organizations approach and work with communities. METHODS: We interviewed policy-makers (5), local professionals (10), service users and community representatives (6) linked to a concrete participatory initiative. Participant observation in relevant meetings helped to enrich the interpretations. Thematic analysis was applied to interview transcripts and field notes. FINDINGS: The findings present a sequence of actions starting with the creation of a network of community-based groups. A set of problems ensued, related to the group's diversity, internal representation, decision-making and funding processes. In response, processionals implemented simultaneously bureaucratic and democratic adjustments, developing a vision of community that ignored the particularities-including the motivations-of local groups. DISCUSSION AND CONCLUSION: Based on these findings, we argue that participatory initiatives should be studied as on-going achievements shaped by broad policy orientations and local configurations of interest. In the process, they produce ad hoc forms of knowledge and visions of community that provide orientation to the agents involved.

Subjective experience of the origin and development of avoidant personality disorder.

OBJECTIVE: To better understand how persons diagnosed with avoidant personality disorder (AVPD) make sense of the origin and development of their current everyday struggles. METHODS: Persons with AVPD (N = 15) were interviewed twice using semi-structured qualitative interviews, which were analyzed through interpretative-phenomenological analysis. Persons with the first-hand experience of AVPD were included in the research. RESULTS: The superordinate theme, "a story of becoming forlorn," encompassed three main themes: "it goes all the way back to when I was little," "there was a distance between others and me," and "transitions made it worse." CONCLUSIONS: Though the results are not necessarily specific to AVPD, the findings clarify how people with AVPD can make sense of their current struggles by constructing developmental life stories in the interplay between themselves as persons and the growing demands of their social world. Furthermore, childhood relational vulnerabilities may challenge the ongoing development of social cognition and skills.

Debate: What if it's not just a phase?

In order to support children and young people who are exploring their gender, we need to develop a shared understanding of gender identities and enhance the evidence base relating to long-term outcomes. All professionals working with children and young people should be trained in gender diversity. Health-care systems must be adapted to enable us to record gender identity; outcome measures should be developed that accommodate different gender identities. In doing so, we will develop clearer information about the number of children and young people who are exploring their gender and the way that gender identities develop throughout childhood. We will also start to demystify gender and work to enhance understanding and acceptance of diversity.

Peer support for frequent users of inpatient mental health care in Uganda: protocol of a quasi-experimental study.

BACKGROUND: Reducing readmissions among frequent users of psychiatric inpatient care could result in substantial cost savings to under-resourced mental health systems. Studies from high-income countries indicate that formal peer support can be an effective intervention for the reduction of readmissions among frequent users. Although in recent years formal peer support programmes have been established in mental health services in a few low- and middle-income countries (LMICs), they have not been rigorously evaluated. METHODS: This protocol describes a quasi-experimental difference-in-differences study conducted as part of a broader evaluation of the Brain Gain II peer support programme based at Butabika National Referral Hospital in Kampala, Uganda. The primary objective is to investigate whether frequent users of psychiatric inpatient care who have access to a peer support worker (PSW+) experience a greater reduction in rehospitalisation rates and number of days spent in hospital compared to those who do not have access to a peer support worker (PSW-). Frequent users, defined as adults diagnosed with either a mental disorder or epilepsy who have had three or more inpatient stays at Butabika over the previous 24 months, are referred to Brain Gain II by hospital staff on five inpatient wards. Frequent users who normally reside in a district where peer support workers currently operate (Kampala, Jinja, Wakiso and Mukono) are eligible for formal peer support and enter the PSW+ group. Participants in the PSW+ group are expected to receive at least one inpatient visit by a trained peer support worker before hospital discharge and three to six additional visits after discharge. Frequent users from other districts enter the PSW- group and receive standard care. Participants' admissions data are extracted from hospital records at point of referral and six months following referral. DISCUSSION: To the best of our knowledge, this will be the first quasi-experimental study of formal peer support in a LMIC and the first to assess change in readmissions, an outcome of particular relevance to policy-makers seeking cost-effective alternatives to institutionalised mental health care.

Contributory injustice in psychiatry.

I explain the notion of contributory injustice, a kind of epistemic injustice, and argue that it occurs within psychiatric services, affecting (at least) those who hear voices. I argue that individual effort on the part of clinicians to avoid perpetrating this injustice is an insufficient response to the problem; mitigating the injustice will require open and meaningful dialogue between clinicians and service user organisations, as well as individuals. I suggest that clinicians must become familiar with and take seriously concepts and frameworks for understanding mental distress developed in service user communities, such as Hearing Voices Network, and by individual service users. This is especially necessary when these concepts and frameworks explicitly conflict with medical or technical understandings of users' experiences. I defend this proposal against three objections.

A systematic review of qualitative studies of adults' experiences of being assessed for psychological therapies.

OBJECTIVE: To synthesize the qualitative literature on adults' experiences of psychological therapy assessments. The review was led by people with experience of undergoing assessments, with high levels of client involvement throughout. SEARCH STRATEGY: A comprehensive search of electronic databases was undertaken, with additional search strategies employed to locate further literature. INCLUSION CRITERIA: Studies were included that qualitatively explored the experiences of people aged 16+ who had been assessed for psychological therapy services. Assessments could be structured or unstructured. Qualitative was defined as any analysed account of people's experiences, including qualitative survey data. DATA EXTRACTION AND SYNTHESIS: Literature quality was appraised using the Critical Appraisal Skills Program checklist, modified to include client involvement and intersectionalities. Following data extraction, thematic synthesis was used to synthesize findings across studies. RESULTS: Of 12 743 titles were screened, with 13 studies relevant to the review. Themes and subthemes were identified at three stages of the assessment process: the journey to the assessment, at the assessment, and after the assessment. Findings highlighted the emotional impact of assessments, collaboration, intersectionalities, rights, pathologization, socioeconomic restrictions, and information and support needs. Implications and limitations were indicated. DISCUSSION AND CONCLUSIONS: Findings were situated within the trauma-informed (TIA) literature. Trauma-informed assessment principles, including collaborative assessments, may be fruitful means of improving people's experiences. Whilst the benefits of collaboration appear self-evident, explicitly collaborative approaches were not the norm, nor were studies conducted independently. Further service user research is needed. A greater understanding of the experience of minority groups is also needed.

Feasibility of a traditional and teletreatment approach to mirror therapy in patients with phantom limb pain: a process evaluation performed alongside a randomized controlled trial.

OBJECTIVE: To evaluate the delivery, acceptance and experiences regarding a traditional and teletreatment approach to mirror therapy as delivered in a randomized controlled trial. DESIGN: Mixed methods, prospective study. SETTING: Rehabilitation centres, hospital and private practices. SUBJECTS: Adult patients with phantom pain following lower limb amputation and their treating physical and occupational therapists. INTERVENTIONS: All patients received 4 weeks of traditional mirror therapy (n = 51), followed by 6 weeks of teletreatment (n = 26) or 6 weeks of self-delivered mirror therapy (n = 25). MAIN MEASURES: Patient files, therapist logs, log files teletreatment, acceptance questionnaire and interviews with patients and their therapists. RESULTS: In all, 51 patients and 10 therapists participated in the process evaluation. Only 16 patients (31%) received traditional mirror therapy according to the clinical framework during the first 4 weeks. Between weeks 5 and 10, the teletreatment was used by 14 patients (56%) with sufficient dose. Teletreatment usage decreased from a median number of 31 (weeks 5-10) to 19 sessions (weeks 11-24). Satisfactory teletreatment user acceptance rates were found with patients demonstrating higher scores (e.g. regarding the usefulness to control pain) than therapists. Potential barriers for implementation of the teletreatment perceived by patients and therapists were related to insufficient training and support as well as the frequency of technical problems. CONCLUSION: Traditional mirror therapy and the teletreatment were not delivered as intended in the majority of patients. Implementation of the teletreatment in daily routines was challenging, and more research is needed to evaluate user characteristics that influence adherence and how technology features can be optimized to develop tailored implementation strategies.

Struggling to be a person: Lived experience of avoidant personality disorder.

OBJECTIVE: To better understand the subjective lived experience of persons diagnosed with avoidant personality disorder (AVPD). METHODS: Persons with an AVPD (N = 15) were interviewed twice with semistructured qualitative interviews and analyzed through interpretative-phenomenological analysis. Persons with first-hand experience of AVPD were included in the research process. RESULTS: The superordinate theme, "struggling to be a person," encompassed two main themes. The first, "fear and longing," incorporated the subthemes "longing for connection," "dreading to get close" and "being alone, for better or for worse." The second main theme, "a doubting self," included the subthemes "feeling insecure" and "searching for a sense of self." CONCLUSIONS: The findings shed light on how the reflexive selves of people with AVPD might struggle with sense-making, sense of agency, and identity. This study underscores how impaired tacit knowledge of social behavior can hamper the process of being a person in relation to others.

Patient family advisors' perspectives on engagement in health-care quality improvement initiatives: Power and partnership.

BACKGROUND: Engagement of the public in defining and shaping the organization and delivery of health care is increasingly viewed as integral to improving quality and promoting transparent decision making. Meaningful engagement of the public in health-care reform is predicated on shifting entrenched power imbalances between health-care systems and those it claims to serve. OBJECTIVES: To describe the expressions, forms and spaces of power from the perspectives of persons who participated as Patient/Family Advisors (PFAs) in Rapid Process Improvement Workshops (RPIWs) within Saskatchewan, Canada. METHODS: Using a qualitative, interpretive approach, in-depth interviews were conducted with a purposive sample of 18 PFAs who had participated in at least one RPIW over the past year. Deductive thematic analysis was informed by Gaventa's model of power. RESULTS: Motivations for serving as a PFA included a sense of obligation to contribute to the improvement of a public system, recognition of their rights as citizens within a publicly funded system and an opportunity to openly express their concerns where previous encounters had been very negative. The invited spaces of the RPIWs were created by policymakers to accord visible power to PFAs. Participation resulted in PFAs gaining new insights into the structure and operations of the system, affirmation of their right to advocate and recognition of the potential to claim spaces of power as consumers. Advisement on specific health-care initiatives using the vehicle of PFAs shaped and promoted new forms and spaces of power, representing one step in a very long road to full engagement of consumers in health care.