The impact of early intervention psychosis services on hospitalisation experiences: a qualitative study with young people and their carers.

BACKGROUND: While a core aim of early intervention psychosis services (EIPS) is to prevent hospitalisation, many with a first episode of psychosis (FEP) will require inpatient care. We explored young people's (YP) and their carers' hospitalisation experiences prior to and during EIPS engagement and how factors across these services influenced these experiences. METHODS: Using purposive sampling, we recruited twenty-seven YP, all of whom had been involved with the hospital system at some stage, and twelve support persons (parents and partners of YP) from state and federally funded EIPS in Australia with different models of care and integration with 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. RESULTS: Four key themes were identified as influential in shaping participant's hospital experiences and provide ideas for an approach to care that is improved by the effective coordination of that care, and includes this care being delivered in a trauma informed manner: (1) A two-way street: EIPS affected how participants experienced hospitalisation, and vice versa; (2) It's about people: the quality and continuity of relationships participants had with staff, in hospital and at their EIPS, was central to their experience; (3) A gradual feeling of agency: participants viewed EIPS as both reducing involuntary care and supporting their self-management; and (4) Care coordination as navigation for the healthcare system: great when it works; frustrating when it breaks down. CONCLUSIONS: Hospitalisation was viewed as a stressful and frequently traumatic event, but a approach to care founded on trust, transparency, and collaboration that is trauma-informed ameliorated this negative experience. Consistent EIPS care coordination was reported as essential in assisting YP and carers navigate the hospital system; conversely, discontinuity in EIPS staff and lack of integration of EIPS with hospital care undermined the positive impact of the EIPS care coordinator during hospitalisation. Care coordinator involvement as a facilitator, information provider, and collaborator in inpatient treatment decisions may improve the usefulness and meaningfulness of hospital interventions.

The effectiveness of brief non-pharmacological interventions in emergency departments and psychiatric inpatient units for people in crisis: A systematic review and narrative synthesis.

OBJECTIVE: Heterogeneous brief non-pharmacological interventions and guidelines exist to treat the burgeoning presentations to both emergency department and inpatient settings, for those in a crisis of mental ill-health. We systematically reviewed the literature to create a taxonomy of these brief non-pharmacological interventions, and review their evaluation methods and effectiveness. METHOD: We conducted a systematic review across Cochrane, CINAHL, DARE, Embase, MEDLINE, PsycINFO databases. Studies meeting quality criteria, using Joanna Briggs Institute tools, were eligible. Interventions were categorised, and outcomes synthesised. RESULTS: Thirty-nine studies were included: 8 randomised controlled trials, 17 quasi-experimental, 11 qualitative studies, and 3 file audits. Taxonomy produced six coherent intervention types: Skills-focussed, Environment-focussed, Special Observation, Psychoeducation, Multicomponent Group and Multicomponent Individual. Despite this, a broad and inconsistent range of outcome measures reflected different outcome priorities and prevented systematic comparison of different types of intervention or meta-analysis. Few brief non-pharmacological interventions had consistent evidential support: sensory modulation rooms consistently improved distress in inpatient settings. Short admissions may reduce suicide attempts and readmission, if accompanied by psychotherapy. Suicide-specific interventions in emergency departments may improve depressive symptoms, but not suicide attempt rates. There was evidence that brief non-pharmacological interventions did not reduce incidence of self-harm on inpatient wards. We found no evidence for frequently used interventions such as no-suicide contracting, special observation or inpatient self-harm interventions. CONCLUSION: Categorising brief non-pharmacological interventions is feasible, but an evidence base for many is severely limited if not missing. Even when there is evidence, the inconsistency in outcomes often precludes clinicians from making inferences, although some interventions show promise.

The development of a novel sexual health promotion intervention for young people with mental ill-health: the PROSPEct project.

BACKGROUND: Young people with mental ill-health experience higher rates of high-risk sexual behaviour, have poorer sexual health outcomes, and lower satisfaction with their sexual wellbeing compared to their peers. Ensuring good sexual health in this cohort is a public health concern, but best practice intervention in the area remains under-researched. This study aimed to co-design a novel intervention to address the sexual health needs of young people with mental ill-health to test its effectiveness in a future trial undertaken in youth mental health services in Melbourne, Australia. METHODS: We followed the 2022 Medical Research Council (MRC) guidelines for developing and evaluating complex interventions. This involved synthesising evidence from the 'top down' (published evidence) and 'bottom up' (stakeholder views). We combined systematic review findings with data elicited from qualitative interviews and focus groups with young people, carers, and clinicians and identified critical cultural issues to inform the development of our intervention. RESULTS: Existing evidence in the field of sexual health in youth mental health was limited but suggested the need to address sexual wellbeing as a concept broader than an absence of negative health outcomes. The Information-Motivation-Belief (IMB) model was chosen as the theoretical Framework on which to base the intervention. Interviews/focus groups were conducted with 29 stakeholders (18 clinicians, three carers, and eight young people). Synthesis of the evidence gathered resulted in the co-design of a novel intervention consisting of an initial consultation and four 60-90-minute sessions delivered individually by a young 'sex-positive' clinician with additional training in sexual health. Barriers and supports to intervention success were also identified. CONCLUSIONS: Using the MRC Framework has guided the co-design of a potentially promising intervention that addresses the sexual health needs of young people with mental ill-health. The next step is to test the intervention in a one-arm feasibility trial.

A qualitative exploration of young people's mental health needs in rural and regional Australia: engagement, empowerment and integration.

BACKGROUND: Australian rural and regional communities are marked by geographic isolation and increasingly frequent and severe natural disasters such as drought, bushfires and floods. These circumstances strain the mental health of their inhabitants and jeopardise the healthy mental and emotional development of their adolescent populations. Professional mental health care in these communities is often inconsistent and un-coordinated. While substantial research has examined the barriers of young people's mental health and help-seeking behaviours in these communities, there is a lack of research exploring what adolescents in rural and regional areas view as facilitators to their mental health and to seeking help when it is needed. This study aims to establish an in-depth understanding of those young people's experiences and needs regarding mental health, what facilitates their help-seeking, and what kind of mental health education and support they want and find useful. METHOD: We conducted a qualitative study in 11 drought-affected rural and regional communities of New South Wales, Australia. Seventeen semi-structured (14 group; 3 individual) interviews were held with 42 year 9 and 10 high school students, 14 high school staff, and 2 parents, exploring participants' experiences of how geographical isolation and natural disasters impacted their mental health. We further examined participants' understandings and needs regarding locally available mental health support resources and their views and experiences regarding mental illness, stigma and help-seeking. RESULTS: Thematic analysis highlighted that, through the lens of participants, young people's mental health and help-seeking needs would best be enabled by a well-coordinated multi-pronged community approach consisting of mental health education and support services that are locally available, free of charge, engaging, and empowering. Participants also highlighted the need to integrate young people's existing mental health supporters such as teachers, parents and school counselling services into such a community approach, recognising their strengths, limitations and own education and support needs. CONCLUSIONS: We propose a three-dimensional Engagement, Empowerment, Integration model to strengthen young people's mental health development which comprises: 1) maximising young people's emotional investment (engagement); 2) developing young people's mental health self-management skills (empowerment); and, 3) integrating mental health education and support programs into existing community and school structures and resources (integration).

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.

eHealth Tools That Assess and Track Health and Well-being in Children and Young People: Systematic Review.

BACKGROUND: eHealth tools that assess and track health outcomes in children or young people are an emerging type of technology that has the potential to reform health service delivery and facilitate integrated, interdisciplinary care. OBJECTIVE: The aim of this review is to summarize eHealth tools that have assessed and tracked health in children or young people to provide greater clarity around the populations and settings in which they have been used, characteristics of digital devices (eg, health domains, respondents, presence of tracking, and connection to care), primary outcomes, and risks and challenges of implementation. METHODS: A search was conducted in PsycINFO, PubMed or MEDLINE, and Embase in April 2020. Studies were included if they evaluated a digital device whose primary purpose was to assess and track health, focused on children or young people (birth to the age of 24 years), reported original research, and were published in peer-reviewed journals in English. RESULTS: A total of 39 papers were included in this review. The sample sizes ranged from 7 to 149,329 participants (median 163, mean 5155). More studies were conducted in urban (18/39, 46%) regions than in rural (3/39, 8%) regions or a combination of urban and rural areas (8/39, 21%). Devices were implemented in three main settings: outpatient health clinics (12/39, 31%), hospitals (14/39, 36%), community outreach (10/39, 26%), or a combination of these settings (3/39, 8%). Mental and general health were the most common health domains assessed, with a single study assessing multiple health domains. Just under half of the devices tracked children's health over time (16/39, 41%), and two-thirds (25/39, 64%) connected children or young people to clinical care. It was more common for information to be collected from a single informant (ie, the child or young person, trained health worker, clinician, and parent or caregiver) than from multiple informants. The health of children or young people was assessed as a primary or secondary outcome in 36% (14/39) of studies; however, only 3% (1/39) of studies assessed whether using the digital tool improved the health of users. Most papers reported early phase research (formative or process evaluations), with fewer outcome evaluations and only 3 randomized controlled trials. Identified challenges or risks were related to accessibility, clinical utility and safety, uptake, data quality, user interface or design aspects of the device, language proficiency or literacy, sociocultural barriers, and privacy or confidentiality concerns; ways to address these barriers were not thoroughly explored. CONCLUSIONS: eHealth tools that assess and track health in children or young people have the potential to enhance health service delivery; however, a strong evidence base validating the clinical utility, efficacy, and safety of tools is lacking, and more thorough investigation is needed to address the risks and challenges of using these emerging technologies in clinical care. At present, there is greater potential for the tools to facilitate multi-informant, multidomain assessments and longitudinally track health over time and room for further implementation in rural or remote regions and community settings around the world.

Vocational rehabilitation via social firms: a qualitative investigation of the views and experiences of employees with mental health problems, social firm managers and clinicians.

BACKGROUND: Employment within social firms in the UK is under-developed and under-researched, but a potentially beneficial route to vocational rehabilitation for people with mental health problems. This study explores the views and experiences of employees with mental ill-health, managers of social firms and mental health clinicians, in order to understand the potential value of social firms for the vocational rehabilitation, employment and well-being of people with mental health problems. METHODS: Semi-structured interviews were conducted with 23 employees with mental health problems in 11 social firms in England. A focus group and individual interviews were conducted with 12 managers of social firms. Two focus groups were held with 16 mental health clinicians. Data were analysed using thematic analysis. RESULTS: Most employees expressed very positive views about working in a social firm. In responses from both employees and social firm managers, an overarching theme regarding the supportive ethos of social firms encompassed several related features: openness about mental health issues; peer, team and management support; flexibility; and support to progress and develop skills over time. Managers identified benefits of employing people with mental health problems who were sufficiently recovered. Knowledge of social firms within clinician focus groups was very limited, although clinicians thought they could be a welcome additional vocational resource. CONCLUSIONS: High levels of job satisfaction among social firm employees may be explained by the supportive ethos of these working environments. Social firms have potential to be a helpful addition to the range of vocational pathways available for people with mental ill-health. Further mixed methods investigations of experiences and outcomes in order to understand who engages with and benefits from this form of vocational rehabilitation would be valuable in informing decisions about scaling up the model.

Technology-Enabled Reform in a Nontraditional Mental Health Service for Eating Disorders: Participatory Design Study.

BACKGROUND: The recent Australian National Agenda for Eating Disorders highlights the role technology can play in improving accessibility and service development through web-based prevention, early access pathways, self-help, and recovery assistance. However, engagement with the eating disorders community to co-design, build, and evaluate these much-needed technology solutions through participatory design processes has been lacking and, until recently, underresourced. OBJECTIVE: This study aims to customize and configure a technology solution for a nontraditional (web-based, phone, email) mental health service that provides support for eating disorders and body image issues through the use of participatory design processes. METHODS: Participants were recruited chiefly through the Butterfly National Helpline 1800 ED HOPE (Butterfly's National Helpline), an Australian-wide helpline supporting anyone concerned by an eating disorder or body image issue. Participants included individuals with lived experience of eating disorders and body image issues, their supportive others (such as family, health professionals, support workers), and staff of the Butterfly Foundation. Participants took part in participatory design workshops, running up to four hours, which were held nationally in urban and regional locations. The workshop agenda followed an established process of discovery, evaluation, and prototyping. Workshop activities included open and prompted discussion, reviewing working prototypes, creating descriptive artifacts, and developing user journeys. Workshop artifacts were used in a knowledge translation process, which identified key learnings to inform user journeys, user personas, and the customization and configuration of the InnoWell Platform for Butterfly's National Helpline. Further, key themes were identified using thematic techniques and coded in NVivo 12 software. RESULTS: Six participatory design workshops were held, of which 45 participants took part. Participants highlighted that there is a critical need to address some of the barriers to care, particularly in regional and rural areas. The workshops highlighted seven overarching qualitative themes: identified barriers to care within the current system; need for people to be able to access the right care anywhere, anytime; recommendations for the technological solution (ie, InnoWell Platform features and functionality); need for communication, coordination, and integration of a technological solution embedded in Butterfly's National Helpline; need to consider engagement and tone within the technological solution; identified challenges and areas to consider when implementing a technological solution in the Helpline; and potential outcomes of the technological solution embedded in the Helpline relating to system and service reform. Ultimately, this technology solution should ensure that the right care is provided to individuals the first time. CONCLUSIONS: Our findings highlight the value of actively engaging stakeholders in participatory design processes for the customization and configuration of new technologies. End users can highlight the critical areas of need, which can be used as a catalyst for reform through the implementation of these technologies in nontraditional services.

Peer-supported self-management for people discharged from a mental health crisis team: a randomised controlled trial.

BACKGROUND: High resource expenditure on acute care is a challenge for mental health services aiming to focus on supporting recovery, and relapse after an acute crisis episode is common. Some evidence supports self-management interventions to prevent such relapses, but their effect on readmissions to acute care following a crisis is untested. We tested whether a self-management intervention facilitated by peer support workers could reduce rates of readmission to acute care for people discharged from crisis resolution teams, which provide intensive home treatment following a crisis. METHODS: We did a randomised controlled superiority trial recruiting participants from six crisis resolution teams in England. Eligible participants had been on crisis resolution team caseloads for at least a week, and had capacity to give informed consent. Participants were randomly assigned to intervention and control groups by an unmasked data manager. Those collecting and analysing data were masked to allocation, but participants were not. Participants in the intervention group were offered up to ten sessions with a peer support worker who supported them in completing a personal recovery workbook, including formulation of personal recovery goals and crisis plans. The control group received the personal recovery workbook by post. The primary outcome was readmission to acute care within 1 year. This trial is registered with ISRCTN, number 01027104. FINDINGS: 221 participants were assigned to the intervention group versus 220 to the control group; primary outcome data were obtained for 218 versus 216. 64 (29%) of 218 participants in the intervention versus 83 (38%) of 216 in the control group were readmitted to acute care within 1 year (odds ratio 0·66, 95% CI 0·43-0·99; p=0·0438). 71 serious adverse events were identified in the trial (29 in the treatment group; 42 in the control group). INTERPRETATION: Our findings suggest that peer-delivered self-management reduces readmission to acute care, although admission rates were lower than anticipated and confidence intervals were relatively wide. The complexity of the study intervention limits interpretability, but assessment is warranted of whether implementing this intervention in routine settings reduces acute care readmission. FUNDING: National Institute for Health Research.

Self-management interventions for people with severe mental illness: systematic review and meta-analysis.

BACKGROUND: Self-management is intended to empower individuals in their recovery by providing the skills and confidence they need to take active steps in recognising and managing their own health problems. Evidence supports such interventions in a range of long-term physical health conditions, but a recent systematic synthesis is not available for people with severe mental health problems.AimsTo evaluate the effectiveness of self-management interventions for adults with severe mental illness (SMI). METHOD: A systematic review of randomised controlled trials was conducted. A meta-analysis of symptomatic, relapse, recovery, functioning and quality of life outcomes was conducted, using RevMan. RESULTS: A total of 37 trials were included with 5790 participants. From the meta-analysis, self-management interventions conferred benefits in terms of reducing symptoms and length of admission, and improving functioning and quality of life both at the end of treatment and at follow-up. Overall the effect size was small to medium. The evidence for self-management interventions on readmissions was mixed. However, self-management did have a significant effect compared with control on subjective measures of recovery such as hope and empowerment at follow-up, and self-rated recovery and self-efficacy at both time points. CONCLUSION: There is evidence that the provision of self-management interventions alongside standard care improves outcomes for people with SMI. Self-management interventions should form part of the standard package of care provided to people with SMI and should be prioritised in guidelines: research on best methods of implementing such interventions in routine practice is needed.Declaration of interestsNone.

Project Synergy: co-designing technology-enabled solutions for Australian mental health services reform.

Project Synergy aims to test the potential of new and emerging technologies to enhance the quality of mental health care provided by traditional face-to-face services. Specifically, it seeks to ensure that consumers get the right care, first time (delivery of effective mental health care early in the course of illness). Using co-design with affected individuals, Project Synergy has built, implemented and evaluated an online platform to assist the assessment, feedback, management and monitoring of people with mental disorders. It also promotes the maintenance of wellbeing by collating health and social information from consumers, their supportive others and health professionals. This information is reported back openly to consumers and their service providers to promote genuine collaborative care. The online platform does not provide stand-alone medical or health advice, risk assessment, clinical diagnosis or treatment; instead, it supports users to decide what may be suitable care options. Using an iterative cycle of research and development, the first four studies of Project Synergy (2014-2016) involved the development of different types of online prototypes for young people (i) attending university; (ii) in three disadvantaged communities in New South Wales; (iii) at risk of suicide; and (iv) attending five headspace centres. These contributed valuable information concerning the co-design, build, user testing and evaluation of prototypes, as well as staff experiences during development and service quality improvements following implementation. Through ongoing research and development (2017-2020), these prototypes underpin one online platform that aims to support better multidimensional mental health outcomes for consumers; more efficient, effective and appropriate use of health professional knowledge and clinical skills; and quality improvements in mental health service delivery.

Developing a Mental Health eClinic to Improve Access to and Quality of Mental Health Care for Young People: Using Participatory Design as Research Methodologies.

BACKGROUND: Each year, many young Australians aged between 16 and 25 years experience a mental health disorder, yet only a small proportion access services and even fewer receive timely and evidence-based treatments. Today, with ever-increasing access to the Internet and use of technology, the potential to provide all young people with access (24 hours a day, 7 days a week) to the support they require to improve their mental health and well-being is promising. OBJECTIVE: The aim of this study was to use participatory design (PD) as research methodologies with end users (young people aged between 16 and 25 years and youth health professionals) and our research team to develop the Mental Health eClinic (a Web-based mental health clinic) to improve timely access to, and better quality, mental health care for young people across Australia. METHODS: A research and development (R&D) cycle for the codesign and build of the Mental Health eClinic included several iterative PD phases: PD workshops; translation of knowledge and ideas generated during workshops to produce mockups of webpages either as hand-drawn sketches or as wireframes (simple layout of a webpage before visual design and content is added); rapid prototyping; and one-on-one consultations with end users to assess the usability of the alpha build of the Mental Health eClinic. RESULTS: Four PD workshops were held with 28 end users (young people n=18, youth health professionals n=10) and our research team (n=8). Each PD workshop was followed by a knowledge translation session. At the conclusion of this cycle, the alpha prototype was built, and one round of one-on-one end user consultation sessions was conducted (n=6; all new participants, young people n=4, youth health professionals n=2). The R&D cycle revealed the importance of five key components for the Mental Health eClinic: a home page with a visible triage system for those requiring urgent help; a comprehensive online physical and mental health assessment; a detailed dashboard of results; a booking and videoconferencing system to enable video visits; and the generation of a personalized well-being plan that includes links to evidence-based, and health professional-recommended, apps and etools. CONCLUSIONS: The Mental Health eClinic provides health promotion, triage protocols, screening, assessment, a video visit system, the development of personalized well-being plans, and self-directed mental health support for young people. It presents a technologically advanced and clinically efficient system that can be adapted to suit a variety of settings in which there is an opportunity to connect with young people. This will enable all young people, and especially those currently not able or willing to connect with face-to-face services, to receive best practice clinical services by breaking down traditional barriers to care and making health care more personalized, accessible, affordable, and available.

Views and experience of communication when receiving a serious mental health diagnosis: satisfaction levels, communication preferences, and acceptability of the SPIKES protocol.

BACKGROUND: There is limited research investigating how information about a mental health diagnosis is discussed and received. AIMS: To measure community-based service users' satisfaction and preferences toward receiving news of a serious mental health diagnosis and to assess the acceptability of a diagnostic communication protocol (SPIKES: Setting; Perception; Invitation; Knowledge; Empathy; Summarizing). METHOD: A survey was conducted with 101 participants. RESULTS: Participants rated the methods clinicians use to facilitate diagnostic discussions are highly important; however, they were not wholly satisfied with their experience. Higher satisfaction was reported if participants were provided with information in a face-to-face meeting (p < 0.001), and if they received supplementary support at the time of diagnosis from additional health professionals rather than only a sole practitioner (p < 0.001). The SPIKES protocol was rated as highly acceptable, with Empathy being rated as the most important feature. CONCLUSIONS: This research indicates there were specific areas of communication practices which can be improved within mental health service provision, as a gap existed between participants' desire for support and their experience. Strategies outlined in the SPIKES protocol, and others such as addressing stigma concerns, may prove useful in development of clinician training and service improvement.

Information giving challenges and support strategies at the time of a mental health diagnosis: qualitative views from Australian health professionals.

PURPOSE: Communication of a mental health diagnosis can be a difficult process and is a poorly understood area of service provision. The aim of this qualitative study was to examine clinicians' perceptions of barriers and helpful strategies to discussing information about a mental health condition. METHOD: Qualitative interviews with 19 Australian clinicians (general practitioners, mental health nurses, psychiatrists, and psychologists) working in several settings (community, hospital inpatient, outpatient, accident and emergency) and locations (urban, suburban and rural) were conducted and analysed thematically. RESULTS: After theme saturation was reached, four primary themes relating to barriers and facilitators to communication at the time of diagnosis were identified in the data. Outside a recognised lack of focus on this area in training, themes included (1) engagement and timing of conversations; (2) stigma and its reduction; (3) perceived and desired knowledge for diagnostic information; and (4) working with distress. The synthesis of themes is demonstrated in a flowchart of suggestions for communicating news of mental health diagnosis that tracks the patient journey in receiving information from initial engagement to follow-up. CONCLUSIONS: Talking with an individual about a mental health diagnosis is a non-linear, complex and changeable situation. However, health professionals report using specific strategies to aid this communication process, to meet the specific individual's needs. Strategies such as tailoring to the person's situation, utilising collaborative practice, effective coordination, and addressing stigma may be useful to inform clinician training and support whilst diagnosis remains a key feature of the mental health system in Australia.

A qualitative exploration of service users' information needs and preferences when receiving a serious mental health diagnosis.

Helpful strategies for communicating news of a serious mental health diagnosis are poorly understood. This study explored service users' preferences for how they would like clinicians to deliver such news when a diagnosis of mental illness is made. Qualitative interviews were conducted with forty-five individuals identifying with serious mental illness in eleven community based mental health facilities. Inductive thematic analysis resulted in eight primary themes. Five themes related to the structure and content of the discussion; including a focus on information exchange, using an individualized collaborative partnership paradigm, addressing stigma, balancing hope with realism, and recognizing the dynamic nature of diagnosis. The remaining themes related to the involvement of others; including the importance of clinicians' communication and relationship skills, involvement and education of carers, and offering an opportunity for peer support. The product of the synthesis of themes is a step-wise model for communicating news of mental health diagnosis.

The clinical profile of employees with mental health problems working in social firms in the UK.

BACKGROUND: UK social firms are under-researched but are a potentially important vocational option for people with mental health problems. AIMS: To describe the clinical profile, satisfaction levels and experiences of social firms employees with mental health problems. METHOD: Clinical, work and service use characteristics were collected from social firms' employees with mental health problems in England and Wales. Workplace experience and satisfaction were explored qualitatively. RESULTS: Predominantly, social firms' employees (N = 80) report that they have a diagnosis of depression (56%) and anxiety (41%). People with schizophrenia (20%) or bipolar disorder (5%) were a minority. Respondents had low symptom and disability levels, high quality of life and job satisfaction and experienced reductions in secondary mental health service use over time. High-workplace satisfaction was related to flexibility, manager and colleague support and workplace accommodations. CONCLUSIONS: The clinical profile, quality of life and job satisfaction level of employees with mental health problems suggest social firms could be a useful addition to UK vocational services for some people. Current employees mainly have common mental disorders, and social firms will need to shift their focus if they are to form a substantial pathway for the vocational recovery of people currently using community mental health teams.

Communication of a mental health diagnosis: a systematic synthesis and narrative review.

BACKGROUND: There is limited understanding of the mechanisms used to effectively communicate with service-users about their mental health diagnoses. AIMS: To conduct a systematic synthesis of studies that present data on the communication of a psychiatric diagnosis. METHODS: Comprehensive database and manual searches were conducted resulting in the inclusion of 30 quantitative and qualitative papers. RESULTS: The majority of studies were descriptive. The rate of service-users being informed of their diagnosis has increased over the past decade. Consumer communication preferences were not always satisfactorily addressed in practice. Individual characteristics of service-users and clinicians influenced whether a diagnostic discussion took place. RESULTS from intervention studies aimed at facilitating diagnostic communication reported significant improvements in service-user satisfaction and mood and clinician communication skills. CONCLUSIONS: This review highlights a gap in the system of communication between clinicians and service-users. To assist clinicians to talk effectively with individuals about their mental health, communication protocols and training need to be further developed and assessed. Such developments would benefit from well-designed randomised controlled trial protocols, should incorporate service-users' preferences and address stigma-related concerns.

The role of human involvement and support in digital mental health interventions for people with schizophrenia spectrum disorders: a critical review.

PURPOSE OF REVIEW: Schizophrenia spectrum disorders (SDD) are characterized by a complex array of psychosis symptoms, and typically require ongoing and long-term support, including pharmacological and nonpharmacological management. Digital mental health interventions (DMHIs) have been suggested as a novel therapeutic approach to enable low-cost, scalable improvements in quality of care for adults living with SSD. However, the types and role of human involvement and support within DMHIs is currently unknown. RECENT FINDINGS: Several recent systematic reviews and meta-analyses have investigated the potential efficacy of DMHIs for people with SSD, with scant yet emerging systematic evidence on the effects of human support within DMHIs on mental health outcomes. Further, several recent individual studies examined the efficacy of DMHIs with human support among people with SSD and provided valuable insights into the potential key elements of such support on outcomes relevant to this population. SUMMARY: The current critical review provides the first narrative synthesis of available evidence to guide clinicians and intervention develops in designing DMHIs with adequate human support that may enhance long-term outcomes of people living with SSD.

Making sense of narcolepsy: A qualitative exploration of how persons with narcolepsy perceive symptoms and their illness experience.

INTRODUCTION: Understanding how persons with narcolepsy conceptualize symptoms, daily impact and illness experience is key to facilitating dialogue between patients and healthcare professionals. These concepts are usually explored from the perspective of healthcare professionals/researchers and rarely from the perspective of those with narcolepsy. METHODS: 127 self-reported persons with narcolepsy were recruited from an Australian patient support group. A short demographic survey was completed. All agreed to participate in a subsequent 1:1 semi-structured interview. Saturation was reached after 24 interviews (mean age = 33 years (SD 11) with 44% reporting cataplexy). A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis. RESULTS: Participants perceived physical fatigue, sleepiness, and two separate experiences of 'falling asleep/sleep attacks' as distinct symptoms rather than a multidimensional construct (i.e. excessive daytime sleepiness). We also identified two experiences of cataplexy, one triggered by acute emotion and another by a stressor. Participants determined their narcolepsy to be 'well-managed' by the level of functional impairment rather than the frequency of any symptom. Almost all participants described experiencing anticipated stigma and internalized or 'self-' stigma, likely stemming from societal devaluation of sleep and the conflation of sleepiness with laziness. CONCLUSION: Descriptions of common symptoms often differed between participants and the existing literature. These differences likely impact patient-physician communication, with both parties utilizing the same terminology to communicate different concepts. The characterization of stigma in narcolepsy presents opportunities for future research exploring the impact and possible development of interventions to reduce the substantial psychological comorbidity in persons with narcolepsy.

A qualitative exploration of the lived experience of mothers caring for a child with narcolepsy.

STUDY OBJECTIVES: Parents/carers of a child with narcolepsy are often required to become experts in narcolepsy and navigate health care, education, and welfare systems on behalf of their child. Managing pediatric narcolepsy is complex and challenges the child and the entire family, yet few studies have explored carers' experiences. METHODS: Twenty mothers (50% had a child with narcolepsy < 18 years at the time of interview; 85% narcolepsy with cataplexy) participated in a 1:1 semistructured interview. Participation from fathers was sought; however, none were recruited. A multidisciplinary team of researchers/clinicians analyzed interview transcripts using thematic analysis. RESULTS: Mothers perceived that most people misunderstood the whole-person impact of narcolepsy, including their child's peers, teachers, and support networks. Narcolepsy had a substantial psychological impact on both the child and the whole family yet was largely unaddressed by health care professionals, leaving mothers unsure of where to turn for help. Most parents described negative experiences with their child's specialist, often perceiving the specialists to lack knowledge specific to narcolepsy. Information about illness trajectory and support services was limited or inaccessible, fueling many mothers' hopes and fears for their child's future. Mothers also frequently described feelings of abandonment by the health care system. CONCLUSIONS: Our results contextualize the whole-person impact of narcolepsy from the perspective of parents and carers, highlighting the need for proactive inclusion of parents/carers in developing health care policy and practice. It calls for developing tools and resources to capture "well-managed" narcolepsy from the perspective of parents/carers for use in research and clinical practice. CITATION: Schokman A, Cheung J, Klinner C, et al. A qualitative exploration of the lived experience of mothers caring for a child with narcolepsy. J Clin Sleep Med. 2024;20(5):699-707.