Three things we learned along the way: lessons for training in psychiatric epidemiology.

The coronavirus disease 2019 (COVID-19) pandemic, and its associated mortality, morbidity, and deep social and economic impacts, was a global traumatic stressor that challenged population mental health and our de facto mental health care system in unprecedented ways. Yet, in many respects, this crisis is not new. Psychiatric epidemiologists have recognized for decades the need and unmet need of people in distress and the limits of the public mental health services in the United States. We argue that psychiatric epidemiologists have a critical role to play as we endeavor to address population mental health and draw attention to 3 areas of consideration: elevating population-based solutions; engaging equitably with lived experience; and interrogating recovery. Psychiatric epidemiology has a long history of both responding to and shaping our understanding of the relationships among psychiatric disorders and society through evolving methods and training, and the current sociohistorical moment again suggests that shifts in our practice can strengthen our field and its impact. This article is part of a Special Collection on Mental Health.

Experiences of hospital care for people with multiple long-term conditions: a scoping review of qualitative research.

BACKGROUND: Multiple long-term conditions-the co-existence of two or more chronic health conditions in an individual-present an increasing challenge to populations and healthcare systems worldwide. This challenge is keenly felt in hospital settings where care is oriented around specialist provision for single conditions. The aim of this scoping review was to identify and summarise published qualitative research on the experiences of hospital care for people living with multiple long-term conditions, their informal caregivers and healthcare professionals. METHODS: We undertook a scoping review, following established guidelines, of primary qualitative research on experiences of hospital care for people living with multiple long-term conditions published in peer-reviewed journals between Jan 2010 and June 2022. We conducted systematic electronic searches of MEDLINE, CINAHL, PsycInfo, Proquest Social Science Premium, Web of Science, Scopus and Embase, supplemented by citation tracking. Studies were selected for inclusion by two reviewers using an independent screening process. Data extraction included study populations, study design, findings and author conclusions. We took a narrative approach to reporting the findings. RESULTS: Of 8002 titles and abstracts screened, 54 papers reporting findings from 41 studies conducted in 14 countries were identified as eligible for inclusion. The perspectives of people living with multiple long-term conditions (21 studies), informal caregivers (n = 13) and healthcare professionals (n = 27) were represented, with 15 studies reporting experiences of more than one group. Findings included poor service integration and lack of person-centred care, limited confidence of healthcare professionals to treat conditions outside of their specialty, and time pressures leading to hurried care transitions. Few studies explored inequities in experiences of hospital care. CONCLUSIONS: Qualitative research evidence on the experiences of hospital care for multiple long-term conditions illuminates a tension between the desire to provide and receive person-centred care and time pressures inherent within a target-driven system focussed on increasing specialisation, reduced inpatient provision and accelerated journeys through the care system. A move towards more integrated models of care may enable the needs of people living with multiple long-term conditions to be better met. Future research should address how social circumstances shape experiences of care.

The experiences of individuals who have had gestational diabetes: A qualitative exploration.

AIM: To qualitatively explore the experiences of individuals with Gestational Diabetes Mellitus (GDM) in Australia, and to recognise opportunities for leveraging digital health to enhance the support of GDM management. METHOD: A cross sectional online survey assessed the experiences of individuals with GDM, the healthcare system and their digital health usage. Respondents (recruited via a national diabetes registry or social media) were adults receiving GDM care within Australia in the last 5 years, who responded to any of three open-ended questions (n = 815) exploring positive, negative and other GDM experiences. Thematic analysis was utilised, and themes were mapped to the socio-ecological systems framework. RESULTS: At a system level, themes related to (1) accessibility of care including the value of digital health and the inflexible or inconsistent perception of the (2) implementation of guidelines. At an interpersonal level, themes covered the need for adequate (3) health information provision, and (4) supportive care, as well as highlighting (5) experiences of stigma including a desire for greater awareness of GDM. Individual-level themes included: (6) differential barriers to accessing care; (7) negative emotional burden; (8) internalisation of stigma; (9) dietary freedom and social impact and (10) opportunity for change derived from having GDM. CONCLUSION: Findings suggest a demand for more supportive, person-centred GDM care, improved information provision and individualised implementation of clinical guidelines. Such mechanisms may support reduced barriers to accessing care or negative psychosocial impacts of GDM. Though not central to the identified experiences, digital health tools may help address the need for optimised GDM care.

Real-world lived experience of older adults with type 1 diabetes after an automated insulin delivery trial.

AIMS: First-generation closed-loop automated insulin delivery improves glycaemia and psychosocial outcomes among older adults with type 1 diabetes in clinical trials. However, no study has previously assessed real-world lived experience of older adults using closed-loop therapy outside a trial environment. METHODS: Semi-structured interviews were conducted with older adults who were pre-existing insulin pump users and previously completed the OldeR Adult Closed-Loop (ORACL) randomised trial. Interviews focused on perceptions of diabetes technology use, and factors influencing decisions regarding continuation. RESULTS: Twenty-eight participants, mean age 70 years (SD 5), were interviewed at median 650 days (IQR 608-694) after their final ORACL trial visit. At interview, 23 participants (82%) were still using a commercial closed-loop system (requiring manual input for prandial insulin bolus doses). Themes discussed in interviews relating to closed-loop system use included sustained psychosocial benefits, cost and retirement considerations and usability frustrations relating to sensor accuracy and system alarms. Of the five participants who had discontinued, reasons included cost, continuous glucose monitoring-associated difficulties and usability frustrations. Cost was the largest consideration regarding continued use; most participants considered the increased ease of diabetes management to be worth the associated costs, though cost was prohibitive for some. CONCLUSIONS: Almost 2 years after completing a closed-loop clinical trial, closed-loop automated insulin delivery remains the preferred type 1 diabetes therapy for the majority of older adult participants. Chronological age is not a barrier to real-world successful use of diabetes technology. Identifying age-related barriers, and solutions, to diabetes technology use among older adults is warranted.

Patient experiences of receiving a diagnosis of hypermobile Ehlers-Danlos syndrome.

Hypermobile Ehlers-Danlos syndrome (hEDS) presents with a wide range of clinical symptoms and comorbidities that impact quality of life. The diagnosis is challenging and often delayed due to the heterogeneity of the disease and lack of diagnostic biomarkers, which adds to the disease burden by affecting patients' psychosocial adaptation and overall well-being. Previous studies have revealed that healthcare professionals and the public have a limited understanding and familiarity with the condition, which leads to disapproval and skepticism that greatly impact patients' social spheres and welfare. While physical manifestations have been widely discussed, the psychosocial impact and the importance of receiving a diagnosis have not been fully studied in the current literature. This survey study investigated the impact of diagnosis in hEDS patients, selected from the University of Miami's hEDS registry. Survey questions were formulated based on clinical expertise and literature review. Descriptive statistics, Mann-Whitney test, and Spearman's correlation were used for data analysis. The median age at symptom presentation was 10 years, with a median gap of 4 years before the initial medical evaluation. On average, it took 10 years to receive a diagnosis of hEDS. Nearly all participants (95.2%) expressed receiving a diagnosis as "important" or "highly important," with 81.9% agreeing that it helped them cope with their condition better, 76.8% could better manage their symptoms, and felt more in control of their long-term care. Participants mostly had a positive emotional reaction and experienced an improvement in the support they were receiving from their caregivers and healthcare providers after receiving a diagnosis of hEDS. This study demonstrates that receiving a diagnosis could positively impact the patient's support, quality of care, and overall well-being.

The lived experience of facioscapulohumeral muscular dystrophy: A systematic review and synthesis of the qualitative literature.

INTRODUCTION: In this review we sought to characterize the lived experience of people living with FSHD (pwFSHD) to help clinicians to orient their services to the needs of these individuals. METHODS: Five electronic databases were systematically searched for qualitative research studies containing quotations from pwFSHD. ENhancing Transparency in REporting the Synthesis of Qualitative research and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines informed the methodology. Study quality was assessed using the Critical Appraisal Skills Programme Checklist tool, which measures the methodological quality of qualitative research. Data extracted from included studies were analyzed using thematic synthesis. RESULTS: Ninety-nine pwFSHD took part in the six studies included in this review - from research teams based in two countries. Five descriptive themes emerged: "Engaging with life as symptoms progress"; "The emotional journey"; "A family burden to bear"; "Social connection and disconnection"; and "Tension between visibility and invisibility." From these, two analytical themes were derived: "The emotional challenge of continuing and intensifying adaptation" and "The relational burden of rare disease." DISCUSSION: The lived experience of pwFSHD is characterized by physical, emotional, and social challenges that impact on engagement with life, particularly as symptoms progress. Further research is needed to provide a fuller understanding of the experience of pain in FSHD and of the lived experience of FSHD across cultures.

Exploring the lived experiences of individuals with Parkinson's disease and their relatives: insights into care provision experiences, disease management support, self-management strategies, and future needs in Germany (qualitative study).

BACKGROUND: Parkinson's disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany. METHODS: This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis. RESULTS: Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals' experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as 'life 2.0'. They identified the lack of structured and adequate provision of information, system orientation and social awareness. CONCLUSIONS: In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety. TRIAL REGISTRATION: German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).

How older men live with stress urinary incontinence: Patient experience and navigation to treatment.

OBJECTIVES: To explore the context in which older men navigate treatment for stress urinary incontinence (SUI) following prostate surgery by characterizing lived experience of men with symptomatic SUI. SUBJECTS/PATIENTS AND METHODS: Mixed method study using surveys and semistructured interviews to examine a cohort of men who underwent evaluation for treatment of postprostatectomy SUI. RESULTS: Thirty-six men were interviewed after consultation for SUI and 31 had complete quantitative clinical data. Twenty-six underwent surgery and 10 chose no surgical intervention. In qualitative interviews, respondents experienced substantial decline in quality of life due to incontinence citing concerns associated with use of pads and worrying about incontinence. Most patients reported "workarounds"-efforts to mitigate or manage incontinence including Kegels, physical therapy, and garments. Participants also reported lifestyle changes including less strenuous physical activity, less sexual activity, and/or fewer social gatherings. Patients then described a "breaking point" where incontinence workarounds were no longer sufficient. After seeking evaluation, men described challenges in exploring treatment for SUI, including access to care and provider knowledge of treatment options. CONCLUSION: In a novel study of patients living with SUI a predictable lived experience was observed that culminated in a desire for change or "breaking point." In all men, this led to treatment-seeking behaviors and for many it led to SUI intervention. Despite effective treatments, patients continue to meet barriers gaining access to SUI evaluation and treatment.

Interrogating the effectiveness of service engagement for underserved populations in complex health and social care systems: towards an equitable engagement strategy.

There are increased sector-wide efforts within health and social care systems to engage those with lived experience in service design, delivery, and monitoring - aiming to secure more equitable health outcomes. However, critical knowledge gaps persist around how national whole-system engagement strategies can account for the challenges experienced by populations that encounter exclusion within complex multi-layered systems. This includes a failure to delineate shared challenges across groups, and to develop transferable cross-group frameworks to assist sector-wide change. There is, therefore, a danger that those groups already least heard will be collectively left behind. With a view to informing a more inclusive engagement strategy in Ireland, this national study aims to investigate multi-level (policy and strategic, operational, on-the-ground services, individual) shared challenges impacting engagement for five populations who have been identified as underserved groups in a complex health and social care system, including: (1) those who misuse drugs and alcohol, (2) those who are experiencing homelessness, (3) those experiencing mental health, (4) migrants and those of minority ethnicies, and (5) Irish Travellers. Adopting a mixed-methods approach which draws on an evidence-informed multistakeholder perspective, this study employs data from: focus groups and life-course interviews with lived-experience populations (n=136), five focus groups (n=39) and a national on-line survey (n=320) with population-specific services providers; and national-level stakeholder interviews (n=9). Two cross-group participatory consultative forums with lived-experience and provider participants (n=28) were used to co-produce priority action areas based on study findings. This article presents findings on shared challenges in engaging these groups around leadership and commitment, implementation and action, population capacities, trust, and representation, stigma, and discrimination. Derived from these challenges, six development areas are presented to advance an inclusive equitable engagement approach in Ireland. These comprise: 1) balancing top-down prioritisation, and bottom-up direction; 2) sustaining multi-level, multi-form implementation; 3) measuring effectiveness and action; 4) embedding inclusive equitable engagement; 5) trust as a prerequisite, and outcome; and 6) an equalising, agency empowering agenda.

Treatment Targets and Strategies for Eating Disorders Recovery: A Delphi Consensus With Lived Experience, Carers, Researchers, and Clinicians.

OBJECTIVE: Long-term recovery rates following eating disorders (EDs) treatment remain low. This might be partly due to a lack of agreement between key stakeholder groups, including people with lived experience, carers, clinicians, and researchers, regarding optimal therapeutic targets and strategies. We aimed to reach a consensus across these diverse groups on the most valued treatment targets and strategies for fostering ED recovery. METHOD: We used the Delphi method with two phases: (i) Survey development and (ii) Expert rating. The survey development phase included the design of an initial set of items through scoping review and feedback from a committee of 14 experts. During the survey rating, we engaged a larger panel of 185 experts who comprised the stakeholder groups: Individuals with lived ED experience (n = 49), carers (n = 44), researchers (n = 46), and clinicians (n = 46). RESULTS: Thirty-one targets and 29 strategies reached consensus (> 70% agreement over three rounds). Psychological-emotional-social targets including quality of life, sense of purpose, and emotion regulation, along with ED behaviors, reached the highest agreement (> 90%). Strategies reflecting an individualized approach to treatment (i.e., considering diversity, assessing comorbidities, and enhancing rapport) achieved the highest agreement (> 90%). Responses across groups were similar, except researchers leaning more towards consideration of weight- and eating-related targets. DISCUSSION: Holistic targets and individualized therapeutic strategies have consistent support from the different stakeholder groups involved in ED treatment. The agreed set of targets/strategies may be used, in triangulation with other sources of evidence, to design and evaluate coproduced and personalized interventions.

Every mistake is a treasure: Lessons learned from the TRIANGLE trial for anorexia nervosa.

BACKGROUND: Despite several decades of treatment research for anorexia nervosa (AN), many of the same questions remain: how to boost enrollment, engage participants, prevent attrition, and meet the needs of a diverse patient population within the rigorous framework of a randomized controlled trial (RCT). METHODS: In this research forum, we highlight some of the challenges and opportunities observed over the course of TRIANGLE, the largest RCT for severe AN treatment in the UK to date. We discuss strategies for addressing common challenges and avoiding common pitfalls and propose solutions to future researchers seeking to conduct treatment research in AN. RESULTS: Our experience underscores the value of involving people with lived experience at every stage of intervention research. We offer additional recommendations for treatment researchers, including, (1) early qualitative research to identify patient barriers and obstacles, (2) clear, systematic collaboration with clinical sites for patient recruitment and passive data collection, (3) careful consideration of assessment metrics, including repeated measurement of quality of life, (4) adopting a flexible, patient-centered approach to clinical trial research, and (5) considering the unique needs and obstacles that might impact carer participation in research and their ability to provide support to their loved ones. DISCUSSION: We hope that these lessons learned will prove fruitful for the next generation of researchers embarking on treatment research for AN. PUBLIC SIGNIFICANCE: Using the TRIANGLE trial as an illustrative case study, we highlight the value of lived experience and codesign for developing and testing interventions for AN. We offer several lessons learned over the course of the trial, pertaining to trial enrollment, retention and engagement, measurement of outcomes, and research adaptations for real-world settings, and hope that these recommendations facilitate future treatment research for AN.

Lived experience perspectives on eating disorder research: The use of adaptive trials and research priorities.

OBJECTIVE: This novel study sought to understand lived experience and carer perspectives on the use of adaptive trials to evaluate interventions for eating disorders, in addition to understanding the factors and outcomes of most importance in eating disorder research and treatments from a lived experience perspective. METHOD: A total of 73 people with either lived or carer experience consented, 70 started the questionnaire, and 36 (51%) completed all questions. Participants were asked Likert scale and open-ended questions to understand what factors and outcomes of eating disorder interventions were most important to them and understand their pre-existing knowledge of clinical trials. Two videos were then used to explain randomized controlled trials (RCTs) and adaptive trials and participants were asked their opinions, including perceived benefits and concerns, of each trial type. RESULTS: The thematic analysis found two key themes regarding factors important in eating disorder treatment: Person-centred care and Evidence-based and effective treatment; and two key themes regarding outcomes of treatment: Sustained, full recovery and The bigger picture. Both RCTs and adaptive trials were viewed favorably, however, there was a slight preference for adaptive trials. Key themes for both demonstrated perceived benefits and ethical, practical, and scientific considerations unique to each. DISCUSSION: Findings demonstrate the support of adaptive trials in eating disorder interventions from people with lived experience and their carers. It is recommended that researchers consider the use of adaptive designs and the incorporation of lived experience perspectives when designing future intervention trials. PUBLIC SIGNIFICANCE: This novel study found that the use of adaptive trials in eating disorder intervention research is supported by people with lived experience and carers. Furthermore, the factors and outcomes of most importance to participants in this study are comparable to those previously identified in the emerging literature. The use of adaptive designs and the incorporation of lived experience are recommended in further clinical trials.

Actions targeting the integration of peer workforces in mental health organisations: a mixed-methods systematic review.

BACKGROUND: Lived experience workforces are one of the fastest growing emerging disciplines in Australian mental health service settings. Individuals with lived and living experience of mental distress employed in mental health services, often referred to as peer or lived experience workers, are widely considered essential for mental health recovery and reform. Despite vast growth of this workforce, concerns remain over the widespread integration of peer workforces to align with recommended movement of healthcare services toward greater recovery-orientated and person-centered practices. Previous research has identified barriers for peer work integration including a lack of clear role definition, inadequate training, and poor supportive organisational culture. Stigma, discrimination and a lack of acceptance by colleagues are also common themes. This systematic review seeks to identify organisational actions to support integration of peer workforces for improved mental health service delivery. METHOD: A systematic search was conducted through online databases (n = 8) between January 1980 to November 2023. Additional data were sourced from conference proceedings, hand searching grey literature and scanning reference lists. Qualitative data was extracted and synthesised utilising narrative synthesis to identify key themes and findings reported adhere to PRISMA guidelines. The review protocol was registered with Prospero (CRD: 42,021,257,013). RESULTS: Four key actions were identified: education and training, organisational readiness, Structural adjustments, resourcing and support and, demonstrated commitment to peer integration and recovery practice. CONCLUSIONS: The study identifies actions for mental health service organisations and system leaders to adopt in support of integrating peer and lived experience workforces in service delivery.

Care considerations in medical assistance in dying for persons with mental illness as the sole underlying medical condition: a qualitative study of patient and family perspectives.

BACKGROUND: Persons with mental illness as their sole underlying medical condition are eligible to access medical assistance in dying (MAiD) in a small number of countries, including Belgium, the Netherlands, Luxemburg and Switzerland. In Canada, it is anticipated that people experiencing mental illness as their sole underlying medical condition (MI-SUMC) will be eligible to request MAiD as of March 17th 2024. To date, few studies have addressed patient and family perspectives on MAiD MI-SUMC care processes. This study aimed to address this gap and qualitatively explore the perspectives of persons with lived experience of mental illness and family members on care considerations during MI-SUMC implementation. METHODS: Thirty adults with lived experience of mental illness and 25 adult family members residing in Ontario participated in this study. To facilitate participant engagement, the semi-structured interview used a persona-scenario exercise to discuss perspectives on MAiD MI-SUMC acceptability and care considerations. Framework analysis was used to inductively analyze data using NVivo 12 Pro. Steps, processes, or other care considerations suggested by the participants were charted in a framework matrix after familiarization with the narratives. Key themes were further identified. A lived-experience advisory group participated in every aspect of this study. RESULTS: Six themes were developed from the patient and family narratives: (1) Raising MAiD MI-SUMC awareness; (2) Sensitive Introduction of MAiD MI-SUMC in goals of care discussions; (3) Asking for MAiD MI-SUMC: a person-focused response; (4) A comprehensive circle of MAiD MI-SUMC care; (5) A holistic, person-centered assessment process; and (6) Need for support in the aftermath of the decision. These themes highlighted a congruence of views between patient and family members and described key desired process ingredients, including a person-centred non-judgmental stance by care providers, inter-professional holistic care, shared decision making, and the primacy of patient autonomy in healthcare decision making. CONCLUSIONS: Family and patient perspectives on the implementation of MAiD MI-SUMC offer important considerations for service planning that could complement existing and emerging professional practice standards. These stakeholders' perspectives will continue to be essential in MAiD MI-SUMC implementation efforts, to better address the needs of diverse communities and inform improvement efforts.

Measuring fidelity to manualised peer support for people with severe mental health conditions: development and psychometric evaluation of the UPSIDES fidelity scale.

BACKGROUND: Peer support workers provide support for people experiencing mental health conditions based on their own lived experience of mental health problems. Assessing fidelity to core ingredients of peer support is vital for successful implementation and intervention delivery. Modifications to its implementation are needed when scaling up to different socio-economic settings, raising further uncertainty about fidelity. As part of a large multi-centre study on peer support called Using Peer Support In Developing Empowering Mental Health Services (UPSIDES), we developed and evaluated the psychometric properties of the UPSIDES Fidelity Scale. METHODS: We constructed the fidelity scale based on an initial item pool developed through international expert consultation and iterative feedback. Scale refinement involved site-level expert consultation and translation, resulting in a service user-rated 28-item version and a peer support worker-rated 21-item version assessing receipt, engagement, enactment, competence, communication and peer support-specific components. Both versions are available in six languages: English, German, Luganda, Kiswahili, Hebrew and Gujarati. The scale was then evaluated at six study sites across five countries, with peer support workers and their clients completing their respective ratings four and eight months after initial peer support worker contact. Psychometric evaluation included analysis of internal consistency, construct validity and criterion validity. RESULTS: For the 315 participants, item statistics showed a skewed distribution of fidelity values but no restriction of range. Internal consistency was adequate (range α = 0.675 to 0.969) for total scores and all subscales in both versions. Confirmatory factor analysis indicated acceptable fit of the proposed factor structure for the service user version (χ2/df = 2.746; RMSEA = 0.084) and moderate fit for the peer support worker version (χ2/df = 3.087; RMSEA = 0.093). Both versions showed significant correlations with external criteria: number of peer support sessions; perceived recovery orientation of the intervention; and severity of illness. CONCLUSIONS: The scale demonstrates good reliability, construct and criterion validity, making it a pragmatic and psychometrically acceptable measure for assessing fidelity to a manualised peer support worker intervention. Recommendations for use, along with research and practical implications, are addressed. As validated, multi-lingual tool that adapts to diverse settings this scale is uniquely positioned for global application. TRIAL REGISTRATION: ISRCTN, ISRCTN26008944. Registered on 30 October 2019.

An online evidence-based dictionary of common adverse events of antidepressants: a new tool to empower patients and clinicians in their shared decision-making process.

BACKGROUND: Adverse events (AEs) are commonly reported in clinical studies using the Medical Dictionary for Regulatory Activities (MedDRA), an international standard for drug safety monitoring. However, the technical language of MedDRA makes it challenging for patients and clinicians to share understanding and therefore to make shared decisions about medical interventions. In this project, people with lived experience of depression and antidepressant treatment worked with clinicians and researchers to co-design an online dictionary of AEs associated with antidepressants, taking into account its ease of use and applicability to real-world settings. METHODS: Through a pre-defined literature search, we identified MedDRA-coded AEs from randomised controlled trials of antidepressants used in the treatment of depression. In collaboration with the McPin Foundation, four co-design workshops with a lived experience advisory panel (LEAP) and one independent focus group (FG) were conducted to produce user-friendly translations of AE terms. Guiding principles for translation were co-designed with McPin/LEAP members and defined before the finalisation of Clinical Codes (CCs, or non-technical terms to represent specific AE concepts). FG results were thematically analysed using the Framework Method. RESULTS: Starting from 522 trials identified by the search, 736 MedDRA-coded AE terms were translated into 187 CCs, which balanced key factors identified as important to the LEAP and FG (namely, breadth, specificity, generalisability, patient-understandability and acceptability). Work with the LEAP showed that a user-friendly language of AEs should aim to mitigate stigma, acknowledge the multiple levels of comprehension in 'lay' language and balance the need for semantic accuracy with user-friendliness. Guided by these principles, an online dictionary of AEs was co-designed and made freely available ( https://thesymptomglossary.com ). The digital tool was perceived by the LEAP and FG as a resource which could feasibly improve antidepressant treatment by facilitating the accurate, meaningful expression of preferences about potential harms through a shared decision-making process. CONCLUSIONS: This dictionary was developed in English around AEs from antidepressants in depression but it can be adapted to different languages and cultural contexts, and can also become a model for other interventions and disorders (i.e., antipsychotics in schizophrenia). Co-designed digital resources may improve the patient experience by helping to deliver personalised information on potential benefits and harms in an evidence-based, preference-sensitive way.

Exploring the lived experience of mothers of children with leukemia: a qualitative study from Iran.

BACKGROUND: Leukemia, as one of the most common pediatric cancers, has negatively affected many children around the world. Parents often experience increased feeling of distress shortly after being informed about their child's diagnosis. The distress experienced by parents can adversely affect various aspects of their life. This study aimed to develop an understanding of the lived experience of the mothers whose children suffer from leukemia in Shiraz, Iran. METHODS: This phenomenological study was performed from April to August 2023, and 10 people were selected as participants by purposive sampling. In-depth and semi-structured interviews were performed for collecting the data. RESULTS: The participants' lived experiences during their children's leukemia were classified into five main categories, namely behavioral problems, spiritual issues, psychological problems, issues related to treatment, and economic matters. CONCLUSION: Knowing the experiences of parents, especially mothers, in managing and planning for the care of these children seems essential.

Medical Assistance in Dying for Mental Illness as a Sole Underlying Medical Condition and Its Relationship to Suicide: A Qualitative Lived Experience-Engaged Study: Aide Médicale à Mourir Pour Maladie Mentale Comme Seule Condition Médicale Sous-Jacente et Son Lien Avec le Suicide: Une Etude Qualitative Engagée Dans l'Expérience Vécue.

OBJECTIVE: This lived experience-engaged study aims to understand patient and family perspectives on the relationship between suicidality and medical assistance in dying when the sole underlying medical condition is mental illness (MAiD MI-SUMC). METHOD: Thirty individuals with mental illness (age M = 41.8 years, SD = 14.2) and 25 family members (age M = 47.5 years, SD = 16.0) participated in qualitative interviews examining perspectives on MAiD MI-SUMC and its relationship with suicide. Audio recordings were transcribed and analysed using reflexive thematic analysis. People with lived experience were engaged in the research process as team members. RESULTS: Four main themes were developed, which were consistent across individuals with mental illness and family members: (a) deciding to die is an individual choice to end the ongoing intolerable suffering of people with mental illness; (b) MAiD MI-SUMC is the same as suicide because the end result is death, although suicide can be more impulsive; (c) MAiD MI-SUMC is a humane, dignified, safe, nonstigmatized alternative to suicide; and (4) suicidality should be considered when MAiD MI-SUMC is requested, but suicidality's role is multifaceted given its diverse manifestations. CONCLUSION: For patient-oriented mental health policy and treatment, it is critical that the voices of people with lived experience be heard on the issue of MAiD MI-SUMC. Given the important intersections between MAiD MI-SUMC and suicidality and the context of suicide prevention, the role that suicidality should play in MAiD MI-SUMC is multifaceted. Future research and policy development are required to ensure that patient and family perspectives guide the development and implementation of MAiD MI-SUMC policy and practice.

Everyday Memory Disturbance in Primary Progressive Aphasia.

INTRODUCTION: Mounting evidence indicates distinct memory profiles among the primary progressive aphasia (PPA) variants. Neuropsychological tests reveal disproportionate memory impairments in the logopenic variant PPA (lv-PPA) relative to the non-fluent variant PPA (nfv-PPA) and semantic variant PPA (sv-PPA). The real-world experience of day-to-day memory disturbances in PPA, however, remains poorly understood. METHODS: Everyday expressions of memory in 26 lv-PPA, 24 nfv-PPA, and 40 sv-PPA patients, and 70 healthy controls were examined using the Cambridge Behavioural Inventory-Revised (CBI-R) carer questionnaire. Kruskal-Wallis tests compared CBI-R Memory items (1-8) across groups. Receiver operating characteristic curves evaluated the most discriminative items to distinguish lv-PPA from nfv-PPA. RESULTS: Compared to controls, lv-PPA and sv-PPA patients were reported to experience more day-to-day memory issues (item 1), increased repetition of questions (2), forgetting the names of familiar people and objects (4, 5), and poor concentration (6). lv-PPA patients were also reported to exhibit more occurrences of losing or misplacing items (3) and forgetting the day (7). All PPA groups experienced more confusion in unfamiliar environments (8) than controls. Direct comparisons among PPA groups revealed distinct profiles, with lv-PPA and sv-PPA patients exhibiting more frequent forgetting of names and objects (3, 4) than nfv-PPA, and sv-PPA demonstrating greater day-to-day memory impairment (1), repeated questions (2), and poor concentration (6) compared to nfv-PPA. Forgetting the names of familiar objects (5) was the most sensitive and specific item to distinguish lv-PPA from nfv-PPA. CONCLUSIONS: Our findings demonstrate distinct day-to-day memory profiles in PPA. Future research should explore the influence of language impairments on these profiles.

The feasibility and acceptability of an inoculative intervention video for gambling advertising: a focus group study of academics and experts-by-experience.

BACKGROUND: Gambling advertising employs a range of persuasive strategies. We therefore aimed to evaluate a counter-advertising intervention video to increase resilience to gambling advertising persuasion. METHODS: Three in-depth focus groups were conducted, and each group contained a mixture of gambling-related academics (N = 12) and experts with lived experience of gambling-related harm (N = 10). Participants were given access to the intervention video and provided feedback during the focus groups. Qualitative data were audio recorded and thematically analysed by the research team. RESULTS: Three main themes were identified. First, participants recommended a shorter video that had a simplified and digestible structure. Second, frequent real-world examples of gambling advertisements within the video were discouraged, and the inclusion of a relatable human voiceover was considered imperative to the receptiveness of the video. Finally, participants deemed it important to deliver psychologically grounded yet jargon-free content via a conversational style. An overall narrative framed by consumer-protection was also preferred in order to increase acceptance of the video content, rather than a more didactic framing. CONCLUSIONS: Evaluating the acceptability of a counter advertising intervention video provided valuable insight from both an academic and lived-experience perspective. Such insight is instrumental to the meaningful co-design of counter-advertising interventions.