Three Things We Learned Along the Way: lessons for training in psychiatric epidemiology.

The COVID-19 pandemic, and its associated mortality, morbidity, 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 three areas of consideration: the need to elevate population based solutions; engaging equitably with lived experience; and interrogating recovery. Psychiatric epidemiology has a long history of both responding to and shaping our understandings of the relationships among psychiatric disorders and society through evolving methods and training, and the current socio-historical moment again suggests that shifts in our practice can strengthen our field and its impact.

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.

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.

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).

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.

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.

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.

'Keeping it real': A qualitative exploration of preferences of people with lived experience for participation and active involvement in mental health research in Australia.

BACKGROUND: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. METHODS: Data for this paper were collected in three separate lived experience agenda-setting studies conducted over a 9-year period from 2013 to 2022; two group discussions and an open-ended online survey. Data were combined and thematic analysis undertaken. RESULTS: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. CONCLUSION: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power-sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. PATIENT OR PUBLIC CONTRIBUTION: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience.

Experiences of caring for women with cervical cancer: A qualitative study among male partners in Dar es Salaam, Tanzania.

BACKGROUND: More than three-fourths of cervical cancer cases occur in low- and middle-income countries, with sub-Saharan Africa (SSA) accounting for approximately 25% of global mortality. The significant rise in the prevalence of cervical cancer in SSA amplifies the burden on caregivers, contributing to elevated rates of mental illness, particularly among spouses who provide care. Men who assume the role of caregivers for their partners with cervical cancer encounter unique challenges and substantial adjustments across multiple facets of life, impacting both their own quality of life and that of their partners. Despite this, there is a notable lack of extensive research on the experiences of male partners in caregiving roles, particularly within SSA countries like Tanzania. Therefore, this study aimed to explore the experiences of male partners providing care for women with cervical cancer in Dar es Salaam, Tanzania. METHODS: An exploratory qualitative study was undertaken to explore the experiences of 13 male partners, selected purposively and guided by the principle of saturation. Data gathering employed in-depth interviews utilizing a semistructured interview guide, with subsequent analysis conducted via a thematic analysis approach. RESULTS: Five themes and 13 subthemes were generated, encompassing psychosocial distress, attitudes towards cervical cancer, unity in the provision of care, economic burden, and altered sexual relationships. Participants reported experiencing emotional distress, shifts in social responsibilities, financial challenges, and unfulfilled sexual needs. Moreover, they expressed the need for social, psychological, financial, and sexual and reproductive support. CONCLUSION: This study underscores the numerous challenges encountered by male partners caring for women with cervical cancer, encompassing emotional distress, financial strain, and shifts in social and sexual dynamics. The identified themes and subthemes highlight the intricate interplay of these difficulties and stress the necessity for holistic support systems addressing the social, psychological, financial, and sexual aspects of male partners' experiences. The findings emphasize the importance of designing and implementing comprehensive support programmes tailored to the diverse needs of male partners, ultimately enhancing their quality of life and overall well-being. PATIENT OR PUBLIC CONTRIBUTION: Before the study, the nursing manager assisted in selecting three male partners randomly. These partners were involved in the design of the participants' information sheet, the evaluation of the interview schedule and rooms, and the dissemination of information about the study's purpose to the target population. Their valuable input contributed to improving the participant information sheet, refining data collection procedures and addressing ethical considerations. However, these individuals were not considered study participants. Throughout the study, in-charge nurses in the hospital were informed about the study's goals and helped organize appointments with participants and manage the interview schedule.

Operationalizing the Consolidated Framework for Implementation Research to build and support the lived experience workforce in direct health service provision.

BACKGROUND: The involvement of people with lived experience (LEX) workers in the development, design, and delivery of integrated health services seeks to improve service user engagement and health outcomes and reduce healthcare gaps. Yet, LEX workers report feeling undervalued and having limited influence on service delivery. There is a need for systematic improvements in how LEX workforces are engaged and supported to ensure the LEX workforce can fully contribute to integrated systems of care. OBJECTIVE: This study aimed to operationalize the Consolidated Framework for Implementation Research (CFIR) using a rigorous scoping review methodology and co-creation process, so it could be used by health services seeking to build and strengthen their LEX workforce. SEARCH STRATEGY: A systematic literature search of four databases was undertaken to identify peer-reviewed studies published between 2016 and 2022 providing evidence of the inclusion of LEX workers in direct health service provision. DATA EXTRACTION AND SYNTHESIS: A descriptive-analytical method was used to map current evidence of LEX workers onto the CFIR. Then, co-creation sessions with LEX workers (n = 4) and their counterparts-nonpeer workers (n = 2)-further clarified the structural policies and strategies that allow people with LEX to actively participate in the provision and enhancement of integrated health service delivery. MAIN RESULTS: Essential components underpinning the successful integration of LEX roles included: the capacity to engage in a co-creation process with individuals with LEX before the implementation of the role or intervention; and enhanced representation of LEX across organizational structures. DISCUSSION AND CONCLUSION: The adapted CFIR for LEX workers (CFIR-LEX) that was developed as a result of this work clarifies contextual components that support the successful integration of LEX roles into the development, design, and delivery of integrated health services. Further work must be done to operationalize the framework in a local context and to better understand the ongoing application of the framework in a health setting. PATIENT OR PUBLIC CONTRIBUTION: People with LEX were involved in the operationalization of the CFIR, including contributing their expertise to the domain adaptations that were relevant to the LEX workforce.

Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals.

BACKGROUND: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment. OBJECTIVES: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals. METHODS: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019-2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. RESULTS: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self-management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies. CONCLUSIONS: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences. PATIENT OR PUBLIC CONTRIBUTION: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project.

Young onset dementia and driving cessation: a scoping review of lived experiences.

BACKGROUND: Driving cessation is one of the most challenging life transitions, associated with multiple negative consequences for individuals living with late-onset dementia. This paper extends the literature as to date there is no published review that details the experiences of people living with young onset dementia ("YOD"). METHODS: A comprehensive search of the literature was conducted using the scoping review methodology. RESULTS: Ten studies were included for full text review of 1634 initially identified through database searching. The results of the included articles indicated areas of concern for people living with YOD and their family members including, loss of independence; role change; threat to self-identify; feelings of isolation, grief; acceptance; predictors of driving cessation. CONCLUSION: There is a lack of robust evidence related to driving cessation and the experiences of people living with YOD. No published paper reported psychosocial interventions specifically targeted at supporting persons with YOD through driving cessation.

'The Norm Is to Not Openly Collaborate': Using the Lens of Co-Production to Evaluate the Development of a COVID-19 ICU Triage Policy.

INTRODUCTION: In 2020, surging cases of COVID-19 meant that health services had to plan for crisis-level triage. In the Australian Capital Territory, the Clinical Health Emergency Coordination Centre sought to develop a triage policy in collaboration with a range of consumer, carer and community groups. This study aims to map the collaborative development of the COVID-19 ICU triage policy onto the principles of co-production. METHODS: Interviews were conducted with facilitators, members of advocacy or consumer groups and clinicians who were involved in the development of the triage policy. Interviews were thematically analysed using both theory- and data-driven approaches to, respectively, draw on the theoretical framework of co-production, and to explore participants' perspectives relevant to but beyond the scope of this theoretical framework. RESULTS: The findings suggest that at each stage of the initiative, there were ways in which the principles of co-production were met, and ways in which they were not met. One of the fundamental concerns that arose was about whether trying to solve a problem based on resources was compatible with a solution based on human rights. CONCLUSION: Literature about co-production has been critiqued for being limited to aspirational concerns, or implying co-production is easily achievable. The current study contributes to existing research through the application of the theoretical framework of co-production and exploring ways its aims were met and not met within a system-level collaboration developing a high-stakes health policy. PATIENT OR PUBLIC CONTRIBUTION: This study has been conducted and written by researchers working from lived experience perspectives, and other researchers working from traditionally mainstream health disciplines, including psychology and medicine. Further, the study is about patient and public involvement in the development of a health policy. Thus it both embodies and is about non-tokenistic collaboration between people with lived experience and other health professionals.

Lived experience and family engagement in psychiatry research: A scoping review of reviews.

BACKGROUND: A growing body of research is addressing the process and science of engaging people with lived experience (PWLE) of mental health challenges and other psychiatric conditions, and family members, in research activities. OBJECTIVE: This scoping review of reviews synthesizes literature reviews on the engagement of PWLE and family members in research across the field of psychiatry. METHOD: Systematic searches were conducted in seven bibliographic databases. Records were independently screened first at the title and abstract level, then at the full-text level. Included were any literature synthesis studies published in English, French, or Spanish in any given year, focusing on the engagement of PWLE and/or family members in research within psychiatry. Twenty records were included. Data were extracted in a spreadsheet and codebook thematic analysis was used across the body of articles to synthesize the findings. RESULTS: Aspects of PWLE engagement have been synthesized in 20 review articles reviewing 376 articles across psychiatry as a whole and several subpopulations, including youth mental health, dementia, neurodevelopmental disorders, people who use drugs, and forensic mental health. Information specific to family engagement is lacking. Barriers, facilitators, and positive impacts of PWLE engagement have been widely reported across domains of research, with a considerable degree of consensus across subpopulations. Some negative impacts and reporting challenges have also been identified. DISCUSSION: This scoping review of reviews provides an overarching understanding of the current state of the science of PWLE and family engagement across psychiatry research. The findings can inform future research practices enriched with a genuine and effective engagement with PWLE and families. PATIENT OR PUBLIC CONTRIBUTION: The authorship team includes members with intersecting lived experience and academic identities. Additional lived experience engagement was not conducted as part of this review.

Experiences of suicide survivors of sharing their stories about suicidality and overcoming a crisis in media and public talks: a qualitative study.

BACKGROUND: Media stories of hope and recovery from suicidal ideation have been found to have a positive impact on the audience, but little is known about how individuals who share their own experiences perceive the effects of their storytelling. This study aimed to assess qualitatively, through focus groups, how individuals who shared their personal story of hope and recovery in the media and public talks experienced the process, and which aspects they perceived as important in sharing their coping story. METHODS: Three focus groups were conducted with a total of n = 12 individuals. These included n = 5 participants with experience of suicidal ideation or a suicide attempt, n = 4 individuals who had been bereaved through suicide, and n = 3 participants who experienced both. Participants were recruited from the American organisation "Suicide Survivors United". Thematic analysis was used to assess the participants' perception and experiences of sharing their story. RESULTS: Participants shared that the intention to help others was the main motivation to share their story of hope and recovery. Participants noted many positive effects of their storytelling on themselves and also received positive feedback from the audience, such as improved help-seeking attitudes. The participants offered recommendations for those who want to share their story of hope and recovery, including careful personal preparation and media training before going public. They also discussed media recommendations for talking about suicide in the media. CONCLUSIONS: Sharing a personal story of hope and recovery may have a beneficial impact on the storytellers. Storytelling requires a careful preparation and training before going public and support and guidance is crucial in all stages of the storytelling, particularly to help unexperienced storytellers in going public and using their personal narratives to help prevent suicide.