Development and content validation of a questionnaire to assess the social determinants of mental health in clinical practice.

Introduction: There is growing consensus that consideration of the Social Determinants of Mental Health should be at the centre of mental health care provision. To facilitate this, a validated means to assess mental health service users' social contextual information is arguably needed. We therefore developed a questionnaire to assess the Social Determinants of Mental Health in clinical practice. Methods: Our guideline-informed development consisted of three steps; i) construct and purpose definition, ii) initial item generation based on the literature, similar questionnaires, and a selection of the ICD-10, iii) evaluation, revision, and content validation of the questionnaire. Initially we developed 249 items that were reduced, revised, and validated in several stages to 73 items. Content validation of the questionnaire was achieved through surveys and focus groups including mental health care service users and professionals. Results: The surveys and focus groups indicated the need for a standardised assessment of adverse social factors and highlighted that the benefits of such an assessment would be a more holistic approach to identifying and addressing fundamental factors involved in the development of mental health difficulties. Importantly, this study also revealed how any assessment of the Social Determinants of Mental Health must prioritise the assessed person having a central role in the process and control over their own data. The focus groups identified contradicting recommendations regarding the most suitable context to administer the questionnaire. Discussion: The resulting questionnaire can be considered to be theoretically robust and partially validated. Future research is discussed.

An Artificial Therapist (Manage Your Life Online) to Support the Mental Health of Youth: Co-Design and Case Series.

BACKGROUND: The prevalence of child and adolescent mental health issues is increasing faster than the number of services available, leading to a shortfall. Mental health chatbots are a highly scalable method to address this gap. Manage Your Life Online (MYLO) is an artificially intelligent chatbot that emulates the method of levels therapy. Method of levels is a therapy that uses curious questioning to support the sustained awareness and exploration of current problems. OBJECTIVE: This study aimed to assess the feasibility and acceptability of a co-designed interface for MYLO in young people aged 16 to 24 years with mental health problems. METHODS: An iterative co-design phase occurred over 4 months, in which feedback was elicited from a group of young people (n=7) with lived experiences of mental health issues. This resulted in the development of a progressive web application version of MYLO that could be used on mobile phones. We conducted a case series to assess the feasibility and acceptability of MYLO in 13 young people over 2 weeks. During this time, the participants tested MYLO and completed surveys including clinical outcomes and acceptability measures. We then conducted focus groups and interviews and used thematic analysis to obtain feedback on MYLO and identify recommendations for further improvements. RESULTS: Most participants were positive about their experience of using MYLO and would recommend MYLO to others. The participants enjoyed the simplicity of the interface, found it easy to use, and rated it as acceptable using the System Usability Scale. Inspection of the use data found evidence that MYLO can learn and adapt its questioning in response to user input. We found a large effect size for the decrease in participants' problem-related distress and a medium effect size for the increase in their self-reported tendency to resolve goal conflicts (the proposed mechanism of change) in the testing phase. Some patients also experienced a reliable change in their clinical outcome measures over the 2 weeks. CONCLUSIONS: We established the feasibility and acceptability of MYLO. The initial outcomes suggest that MYLO has the potential to support the mental health of young people and help them resolve their own problems. We aim to establish whether the use of MYLO leads to a meaningful reduction in participants' symptoms of depression and anxiety and whether these are maintained over time by conducting a randomized controlled evaluation trial.

Minimal use of ICD social determinant or phenomenological codes in mental health care records.

BACKGROUND: We have previously argued that psychiatric diagnosis, by focusing on pathology, minimises the role of psychosocial factors. Despite suggestions that traditional diagnosis is the only way to access treatment services, we have recommended standardised use of existing codes for possible social determinants and precise description of psychological phenomena. AIMS: This study examines the current use of social determinant and phenomenological codes in mental health care records. METHODS: Data provided by a local NHS Trust included 21,701 cases with a first contact date between 01 January 2015 and 01 January 2016, 4656 of whom received a primary diagnosis. RESULTS: Overall, codes for possible social determinants were used on only 43 occasions, for 39 individuals (0.8% of the 4656 people receiving a primary diagnosis). Comparison with relevant baseline frequencies revealed a highly significant under-reporting of key social determinants. 19 cases (0.4% of 4.656) used codes for precise description of specific psychological phenomena. CONCLUSIONS: Available ICD codes for social determinants and specific psychological phenomena are under-used in clinical practice.

A systematic review of policy and clinical guidelines on positive risk management.

BACKGROUND: National policies and guidelines advocate that mental health practitioners employ positive risk management in clinical practice. However, there is currently a lack of clear guidance and definitions around this technique. Policy reviews can clarify complex issues by qualitatively synthesising common themes in the literature. AIMS: To review and thematically analyse national policy and guidelines on positive risk management to understand how it is conceptualised and defined. METHOD: The authors completed a systematic review (PROSPERO: CRD42019122322) of grey literature databases (NICE, NHS England, UK Government) to identify policies and guidelines published between 1980 and April 2019. They analysed the results using thematic analysis. RESULTS: The authors screened 4999 documents, identifying 7 eligible policies and 19 guidelines. Qualitative synthesis resulted in three main themes: i) the conflicting aims of positive risk management; ii) conditional positive risk management; and iii) responsible positive risk management. CONCLUSIONS: Analysis highlighted discrepancies and tensions in the conceptualisation of positive risk management both within and between policies. Documents described positive risk management in different and contradictory terms, making it challenging to identify what it is, when it should be employed, and by whom. Five policies offered only very limited definitions of positive risk management.

A Scoping Review and Narrative Synthesis Comparing the Constructs of Social Determinants of Health and Social Determinants of Mental Health: Matryoshka or Two Independent Constructs?

Background: Many health research policies invoke the construct of Social Determinants of Health, and more recently the construct of Social Determinants of Mental Health. While frequently referred to in the literature, it is unclear how these constructs relate to each other. Some commentators conceptualise the Determinants of Mental Health as a subgroup of the Determinants of general Health and others describe the Determinants of Mental Health as an autonomous construct. The current review investigates the relationship between both constructs. Methods: Comprehensive literature searches were conducted for both constructs separately within seven electronic databases. A template analysis was conducted to compare the conceptualisations of the Social Determinants of Health and the Social Determinants of Mental Health. Results: Of 4250 search results, 50 papers (25 for each construct) fulfilled our inclusion criteria and were incorporated into a narrative synthesis. Discussions of the Social Determinants of both general and Mental Health listed the same determinants. Both constructs were conceptualised on multiple levels and factors. Stress and health behaviour were also described as mediators for both constructs. The constructs differed, however, with respect to two components of their aetiologies and epistemologies. First, the causal mechanisms invoked for the Determinants of general Health followed predominantly direct pathways, in contrast to indirect pathways for the Social Determinants of Mental Health. Second, the Social Determinants of Mental Health were reported to influence mental health mediated through individuals' perceptions and appraisal processes. Appraisal processes were considered of far less relevance in the construct of Social Determinants of Health. Conclusion: The constructs of Social Determinants of Health and Social Determinants of Mental Health align in many respects but differ on important aetiological and epistemological grounds. Similar social factors are considered important, but whereas physical health conditions are primarily conceptualised to be driven by objective realities, mental health is explained mainly in terms of perception of these realities. This differentiation between physical and mental health is in line with a modern understanding of mind-body-dualism, the naturalistic dualism after Chalmers. Differentiating the Social Determinants of Mental Health from the Social Determinants of Health might bear relevance for policy making and research.

The effects of psilocybin on cognitive and emotional functions in healthy participants: Results from a phase 1, randomised, placebo-controlled trial involving simultaneous psilocybin administration and preparation.

BACKGROUND: Psilocybin, a psychoactive serotonin receptor partial agonist, has been reported to acutely reduce clinical symptoms of depressive disorders. Psilocybin's effects on cognitive function have not been widely or systematically studied. AIM: The aim of this study was to explore the safety of simultaneous administration of psilocybin to healthy participants in the largest randomised controlled trial of psilocybin to date. Primary and secondary endpoints assessed the short- and longer-term change in cognitive functioning, as assessed by a Cambridge Neuropsychological Test Automated Battery (CANTAB) Panel, and emotional processing scales. Safety was assessed via endpoints which included cognitive function, assessed by CANTAB global composite score, and treatment-emergent adverse event (TEAE) monitoring. METHODS: In this phase 1, randomised, double-blind, placebo-controlled study, healthy participants (n = 89; mean age 36.1 years; 41 females, 48 males) were randomised to receive a single oral dose of 10 or 25 mg psilocybin, or placebo, administered simultaneously to up to six participants, with one-to-one psychological support - each participant having an assigned, dedicated therapist available throughout the session. RESULTS: In total, 511 TEAEs were reported, with a median duration of 1.0 day; 67% of all TEAEs started and resolved on the day of administration. There were no serious TEAEs, and none led to study withdrawal. There were no clinically relevant between-group differences in CANTAB global composite score, CANTAB cognitive domain scores, or emotional processing scale scores. CONCLUSIONS: These results indicate that 10 mg and 25 mg doses of psilocybin were generally well tolerated when given to up to six participants simultaneously and did not have any detrimental short- or long-term effects on cognitive functioning or emotional processing. CLINICAL TRIAL REGISTRATION: EudraCT (https://www.clinicaltrialsregister.eu/) number: 2018-000978-30.

The Psychological Pathway to Suicide Attempts: A Strategy of Control Without Awareness.

OBJECTIVES: This paper aims to identify potential areas for refinement in existing theoretical models of suicide, and introduce a new integrative theoretical framework for understanding suicide, that could inform such refinements. METHODS: Literature on existing theoretical models of suicide and how they contribute to understanding psychological processes involved in suicide was evaluated in a narrative review. This involved identifying psychological processes associated with suicide. Current understanding of these processes is discussed, and suggestions for integration of the existing literature are offered. RESULTS: Existing approaches to understanding suicide have advanced the current knowledge of suicide in various ways. They have guided valuable research in the following areas: motivations for suicide and the psychological distress which influences suicide attempts; ambivalence about suicide; suicidal individuals' focus of attention; and ways in which individuals who contemplate suicide differ from individuals who attempt suicide. We outline a new theoretical framework as a means to integrating all of these concepts into the three principles of control, conflict, and awareness. Within this framework, suicide is regarded as occurring due to a long standing conflict between an individual's personal goals, culminating in an episode of acute loss of control. The new framework posits that the individual then strives to regain control through the means of suicide because of a narrowed awareness of consequences of their actions on other valued goals. This psychological mechanism of limited awareness is posited to be the common pathway by which individuals make a suicide attempt, regardless of which risk factors are present. CONCLUSION: This article introduces a theoretical framework that generates several hypotheses for future research, and focuses on psychological processes occurring during immediate crisis. One of the key hypotheses resulting from our predictions on how individuals progress from contemplating to attempting suicide will be tested in an ongoing program of research: Individuals who attempt suicide have a significantly reduced awareness of consequences of suicide, which would negatively impact on their important life goals, values, principles, or ideals, compared to individuals who contemplate suicide. Therapy guided by the new framework may be more flexible, immediate, and client-focused than other therapies for suicidal individuals.

Development and Evaluation of a Therapist Training Program for Psilocybin Therapy for Treatment-Resistant Depression in Clinical Research.

Introduction: Psychological support throughout psilocybin therapy is mandated by regulators as an essential part of ensuring participants' physical and psychological safety. There is an increased need for specially trained therapists who can provide high-quality care to participants in clinical studies. This paper describes the development and practical implementation of a therapist training program of psychological support within a current phase IIb international, multicenter, randomized controlled study of psilocybin therapy for people experiencing treatment-resistant depression. Description of Training Program: This new and manualized approach, based on current evidence-based psychotherapeutic approaches, was developed in partnership with different mental health researchers, practitioners, and experts; and has been approved by the FDA. Training consists of four components: an online learning platform; in-person training; applied clinical training; and ongoing individual mentoring and participation in webinars.This paper provides a brief overview of the method of support, the rationale and methodology of the training program, and describes each stage of training. The design and implementation of fidelity procedures are also outlined. Lessons Learned: As part of the phase IIb study of psilocybin therapy for treatment-resistant depression, 65 health care professionals have been fully trained as therapists and assisting therapists, across the US, Canada and Europe. Therapists provided informal feedback on the training program. Feedback indicates that the didactic and experiential interactive learning, delivered through a combination of online and in-person teaching, helped therapists build conceptual understanding and skill development in the therapeutic approach. Clinical training and engagement in participant care, under the guidance of experienced therapists, were considered the most beneficial and challenging aspects of the training. Conclusions: Clinical training for therapists is essential for ensuring consistently high-quality psilocybin therapy. Development of a rigorous, effective and scalable training methodology has been possible through a process of early, active and ongoing collaborations between mental health experts. To maximize impact and meet phase III and post-approval need, enhanced online learning and establishing pathways for clinical training are identified as critical points for quality assurance. This will require close public, academic and industry collaboration.

Positive risk management: Staff perspectives in acute mental health inpatient settings.

AIMS: To explore inpatient staff's understanding and implementation of positive risk management. BACKGROUND: Risk management is an essential skill for staff working in acute mental health inpatient settings. National policies advocate the use of positive risk management as a form of collaborative, recovery-focused risk management. However, little is known about how staff understand, operationalize, and use positive risk management in practice. DESIGN: Qualitative reflexive thematic analysis study. METHODS: The authors recruited a purposive sample of healthcare professionals working in acute inpatient settings (N = 16) in 2019 across three National Health Service Trusts in the North-West of England. Participants completed semi-structured interviews which were analysed using reflexive thematic analysis. RESULTS: The analysis generated three themes: (a) within staff barriers; (b) within service user barriers; and (c) delivery in practice. CONCLUSION: Understanding and implementation of positive risk management was dependant on multiple factors, including staffs' beliefs about mental health, levels of worry and anxiety, and amount of experience and seniority. Staff were more likely to use positive risk management with service users that they perceived as being trustworthy and less risky. Use of positive risk management was reliant on the support practitioners received, how able they were to view situations from multiple perspectives, and the degree to which they felt able to prioritize positive risk management. IMPACT: Although staff expressed the desire and intention to practice positive risk management, the current study highlights challenges around operationalization and implementation. The authors discuss the clinical implications of the findings.

How did mental health become so biomedical? The progressive erosion of social determinants in historical psychiatric admission registers.

This paper explores the historical developments of admission registers of psychiatric asylums and hospitals in England and Wales between 1845 and 1950, with illustrative examples (principally from the archives of the Rainhill Asylum, UK). Standardized admission registers have been mandatory elements of the mental health legislative framework since 1845, and procedural changes illustrate the development from what, today, we would characterize as a predominantly psychosocial understanding of mental health problems towards primarily biomedical explanations. Over time, emphasis shifts from the social determinants of admission to an asylum to the diagnosis of an illness requiring treatment in hospital. We discuss the implications of this progressive historical diminution of the social determinants of mental health for current debates in mental health care.

Feasibility and Patient Experiences of Method of Levels Therapy in an Acute Mental Health Inpatient Setting.

This study sought to investigate the feasibility and acceptability of a flexible psychotherapeutic approach - the Method of Levels (MOL) - in an acute mental health inpatient setting. A multi methods approach was used. The feasibility of implementation was investigated by examining the referral rate and the attendance patterns of participants. The acceptability of MOL was explored using a thematic analysis of participant interviews and by recording attendance patterns of participants. Inpatient staff consistently referred patients and the majority of eligible people accepted invitations for therapy. Thematic analysis of peoples' experiences of the therapy generated themes that described participants' experiences of MOL in contrast to routine NHS care, having spent meaningful time with the therapist, and having gained something from the session. The referral rate and uptake of MOL therapy indicates that the resource was appropriate for the setting and acceptable to most participants. Qualitative analyses indicated that participants were comfortable with the therapists' approach, felt understood, and there was a meaningful quality to their interaction. Participants also valued the opportunity to reflect and generate new perspectives of their difficulties. Further research is required to determine the effectiveness of the approach and its translational value beyond this pilot investigation.

Agents of change: Understanding the therapeutic processes associated with the helpfulness of therapy for mental health problems with relational agent MYLO.

OBJECTIVE: To understand the therapeutic processes associated with the helpfulness of an online relational agent intervention, Manage Your Life Online (MYLO). METHODS: Fifteen participants experiencing a mental health related problem used Manage Your Life Online for 2 weeks. At follow-up, the participants each identified two helpful and two unhelpful questions posed by Manage Your Life Online within a single intervention session. Qualitative interviews were conducted and analyzed using thematic and content analysis to gain insight into the process of therapy with Manage Your Life Online. RESULTS: MYLO appeared acceptable to participants with a range of presenting problems. Questions enabling free expression, increased awareness, and new insights were key to a helpful intervention. The findings were consistent with the core processes of therapeutic change, according to Perceptual Control Theory, a unifying theory of psychological distress. Questions that elicited intense emotions, were repetitive, confusing, or inappropriate were identified as unhelpful and were associated with disengagement or loss of faith in Manage Your Life Online. CONCLUSIONS: The findings provide insight into the likely core therapy processes experienced as helpful or hindering and outlines further ways to optimize acceptability of Manage Your Life Online.

'It's nice to think somebody's listening to me instead of saying "oh shut up"'. People with dementia reflect on what makes communication good and meaningful.

WHAT IS KNOWN ON THE SUBJECT?: People with dementia experience cognitive decline which can affect their ability to communicate with others and consequently getting their needs met. Loneliness and social isolation are associated with depression and anxiety, while difficulties communicating may magnify such difficulties. Enhancing meaningful interactions may support maintenance of valued relationships and positive wellbeing. Although previous research has examined communicative experiences, this has been from the perspectives of professionals or caregivers. Exploring meaningful communication from the perspectives of people with dementia is crucial in supporting relationships and wellbeing. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: People with dementia can be active participants in research. They are aware of their cognitive impairments as well as social interactions and features constituting meaningful communications. People with dementia recognized carers' attempts to understand and empathize with them; allowing them to feel valued and heard, empowering them to maintain interactions. Alternatively, feeling dismissed, inferior or pressured to provide 'correct' responses deterred them from further conversations. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: People with dementia have an awareness of their relationships, communications and preferences. Thus, it is imperative to respect this population and make attempts to understand their communication as they sense this effort even when miscommunications occur. Embrace qualities that facilitate person-centred care within communications is vital as this can preserve valued relationships, support one's needs and enhance wellbeing. Such features include active listening, empathizing, being physically and mentally present, spending time to know the individual and sharing experiences, thoughts and emotions. Abstract Introduction Social isolation can be problematic for people with dementia; understanding what makes communication meaningful may reduce such risk. Scientific rationale Previous research has examined caregivers' or professionals' experiences of meaningful communication. Understanding this from the perspectives of people with dementia could enhance their interactions and wellbeing. Aim Exploring what makes communication meaningful from the perspective of people with dementia. Methods Nine dyadic interactions between a person with dementia and a family carer were filmed. Individuals with dementia watched the footage and reflected on their communications in semi-structured interviews. Results Three superordinate themes emerged. Themes 'sharing moments of emotional connection' and 'empowering one's ability to communicate' related to the experience of feeling connected, understood, valued and heard, allowing further communication. Conversely, 'inhibitors to communication' related feeling disempowered and reduced interactions. Discussion Even when carers could not understand what people with dementia attempted to communicate, their efforts to interact with them were valued and considered meaningful as they reinforce their sense of connectedness. Implications for practice Embracing a person-centred approach by actively attuning to the person and continuously attempting to empathize and understand persons with dementia can help preserve important relationships and allow the person to feel valued and interpersonally connected.

What is the relationship between post-traumatic stress disorder, extreme appraisals of internal state and symptoms in bipolar disorder?

BACKGROUND: It is important to understand the factors associated with more severe mood symptoms in bipolar disorder. The integrative cognitive model of bipolar disorder proposes that extreme appraisals of changes to internal states maintain and exacerbate mood symptoms. AIMS: The current study aimed to investigate if post-traumatic stress disorder (PTSD) is related to current depressive and manic bipolar symptoms, and whether this relationship is mediated by appraisals of internal state. METHOD: Participants with bipolar disorder (n = 82) from a randomized controlled trial of cognitive therapy for bipolar disorder (the TEAMS trial) completed self-reported questionnaires assessing appraisals of internal state, generalized anxiety symptoms, and self-reported and observer-rated depressive and manic symptoms. Clinical interviews assessed PTSD co-morbidity. RESULTS: Participants with bipolar and co-morbid PTSD (n = 27) had higher depressive symptoms and more conflicting appraisals than those without PTSD. Regression analyses found PTSD to be associated with depressive symptoms but not manic symptoms. Conflicting appraisals were found to be associated only with manic symptoms meaning that the planned mediation analysis could not be completed. CONCLUSIONS: Findings provide partial support for the integrative cognitive model of bipolar disorder and highlight the need for transdiagnostic treatments in bipolar disorder due to the prevalence and impact of trauma and co-morbidity. Working on trauma experiences in therapy may impact on depressive symptoms for those with bipolar disorder and co-morbid PTSD.

Conversational Agents in the Treatment of Mental Health Problems: Mixed-Method Systematic Review.

BACKGROUND: The use of conversational agent interventions (including chatbots and robots) in mental health is growing at a fast pace. Recent existing reviews have focused exclusively on a subset of embodied conversational agent interventions despite other modalities aiming to achieve the common goal of improved mental health. OBJECTIVE: This study aimed to review the use of conversational agent interventions in the treatment of mental health problems. METHODS: We performed a systematic search using relevant databases (MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane library). Studies that reported on an autonomous conversational agent that simulated conversation and reported on a mental health outcome were included. RESULTS: A total of 13 studies were included in the review. Among them, 4 full-scale randomized controlled trials (RCTs) were included. The rest were feasibility, pilot RCTs and quasi-experimental studies. Interventions were diverse in design and targeted a range of mental health problems using a wide variety of therapeutic orientations. All included studies reported reductions in psychological distress postintervention. Furthermore, 5 controlled studies demonstrated significant reductions in psychological distress compared with inactive control groups. In addition, 3 controlled studies comparing interventions with active control groups failed to demonstrate superior effects. Broader utility in promoting well-being in nonclinical populations was unclear. CONCLUSIONS: The efficacy and acceptability of conversational agent interventions for mental health problems are promising. However, a more robust experimental design is required to demonstrate efficacy and efficiency. A focus on streamlining interventions, demonstrating equivalence to other treatment modalities, and elucidating mechanisms of action has the potential to increase acceptance by users and clinicians and maximize reach.

Method of levels therapy for first-episode psychosis: The feasibility randomized controlled Next Level trial.

OBJECTIVE: We aimed to determine the feasibility and acceptability of Method of Levels (MOL) for people experiencing first-episode psychosis (FEP) to inform decision making about the therapy's suitability for further testing in a larger clinical trial. METHOD: A parallel group randomized controlled trial design was used. Participants (N = 36) were allocated to receive either treatment as usual (TAU) or TAU plus MOL. Recruitment and retention in the trial and the acceptability of the MOL intervention were the primary outcomes. RESULTS: The recruitment target was met within the planned time frame. Retention in the trial at final follow-up was 97%, substantially higher than the 80% threshold prespecified as a successful feasibility outcome. Participant feedback provided initial evidence of the acceptability of the study design and intervention for this population. CONCLUSION: Results support progressing to a larger trial of MOL for FEP. Recommendations for the design of future trials are provided.

Living the life you want following a diagnosis of bipolar disorder: A grounded theory approach.

Bipolar disorder (BD) is considered a severe and lifelong mental health diagnosis. However, there is growing evidence of people defying the odds and recovering. Processes underlying recovery remain poorly understood. This study aimed to explore these recovery processes and extend on the length of recovery defined within previous research. Twelve people previously diagnosed with BD, who had not experienced an episode of depression and/or mania for four or more years, were interviewed. Standardised diagnostic interviews (Structured Clinical Interview for Diagnostic and Statistical Manual-V, Research version) confirmed past diagnosis and recovery time. Qualitative methodology via grounded theory was used to analyse these personal accounts. The analysis revealed 10 overarching categories of what participants reported to be important in their recovery: support, recognition of the problem, believing that things can change and not giving up, instinctive curiosity, medication, psychological therapy, becoming the director of your own life, changing how I think, accepting who I am and how I feel, and looking after me. A model was developed to represent how categories were related. The study was limited by recruitment not leading to the inclusion of people who had distanced themselves from the label of BD. Potential transdiagnostic recovery processes also require further direct exploration. Critically, the study highlights that following a diagnosis of BD, people do experience long-term recovery achieved through self-determined pathways and that being able to live the life you want is therefore achievable. This challenges current diagnostic perspectives and societal messages of lifelong conditions.

'What people diagnosed with bipolar disorder experience as distressing': A meta-synthesis of qualitative research.

BACKGROUND: Bipolar disorder (BD) is considered to have a significantly negative impact on functioning and prognosis is considered poor. Current treatments are modestly effective and predominantly focus on reducing extreme mood fluctuations and symptoms, yet less is known about what patients themselves describe as distressing. Therefore we aimed to assess this through a systematic review. METHODS: A comprehensive literature search was conducted in four major bibliographic databases in August 2017, updated in July 2018. Qualitative studies exploring BD were included if they contained themes related to distress. First person accounts from people with BD discussing what they experience as distressing were extracted and synthesised using thematic synthesis. Author interpretations were also extracted to support the synthesis. RESULTS: Twenty-four studies were included. Five main analytical themes were developed: 1) diagnosis, 2) loss, 3) uncertainty, 4) threat and 5) relationships. Two further crosscutting themes were identified as 1) stigma and 2) fear of relapse. Implications for interventions to focus on these causes of distress also emerged. LIMITATIONS: The included studies did not adequately examine the authors' potential own biases and influences within their interpretations of the data. One author predominantly undertook data extraction and coding for the current review, although research team discussions led to an agreed consensus on themes. CONCLUSIONS: This was the first qualitative study to specifically explore distress in BD. The meta-synthesis highlights important areas that people with BD experience as distressing. Adaptations to current interventions, to focus on what people find distressing could seek to improve treatment outcomes.