Experience-based Investigation and Co-design of Psychosis Centred Integrated Care Services for Ethnically Diverse People with Multimorbidity (CoPICS): study protocol.

INTRODUCTION: Ethnic minorities (also called racialised groups) are more likely to experience severe mental illness (SMI). People with SMI are more likely to experience multimorbidity (MM), making psychosis among racialised groups more likely to lead to MM, poor outcomes, disability and premature mortality. METHODS AND ANALYSIS: This National Institute for Health and Care Research-funded study (151887) seeks to use innovative participatory methods including photovoice and biographical narrative interviews in urban and rural areas of England to assemble experience data. These data will be subjected to polytextual thematic analysis, and alongside pictures and captions, will inform an experienced-based co-design of interventions, the implementation of which will be evaluated. There will be an economic analysis and a process evaluation of the implementation. ETHICS AND DISSEMINATION: This programme of work has received ethical (IRAS 322421; Newcastle North Tyneside Research Ethics Committee 23/NE/0143) and sponsor approval. The findings will be disseminated in galleries showing the creative work, as lay and academic summaries and infographics; as practice briefings for practitioners, commissioners and policy makers; peer-reviewed publications. TRIAL REGISTRATION NUMBER: https://www.researchregistry.com/browse-the-registry%23home/registrationdetails/649c08111c037d0027b17d17/.

Ethnic inequality, multimorbidity and psychosis: can a syndemic framework resolve disputed evidence?

Syndemic theory is described as population-level clustering or co-occurrence of health conditions in the context of shared aetiologies that interact and can act synergistically. These influences appear to act within specific places of high disadvantage. We suggest ethnic inequality in experiences and outcomes of multimorbidity, including psychosis, may be explained through a syndemic framework. We discuss the evidence for each component of syndemic theory in relation to psychosis, using psychosis and diabetes as an exemplar. Following this, we discuss the practical and theoretical adaptations to syndemic theory in order to apply it to psychosis, ethnic inequality and multimorbidity, with implications for research, policy, and practice.

The use of culturally adapted and translated depression screening questionnaires with South Asian haemodialysis patients in England.

BACKGROUND: Depression is common amongst patients receiving haemodialysis (HD). Assessment and intervention when faced with language and cultural barriers is challenging. To support clinician decisions, we conducted a cross-sectional study to assess the use of culturally adapted and translated versions of commonly-used depression screening questionnaires with South Asian patients receiving HD in England. METHODS: Patients completed adapted versions of the Patient Health Questionnaire (PHQ-9), the Centre for Epidemiological Studies Depression Scale Revised (CESD-R), and the Beck Depression Inventory II (BDI-II). All questionnaires were available in Gujarati, Punjabi, Urdu, and Bengali. A comparative sample of white-Europeans completed the questionnaires in English. The research was based across 9 National Health Service (NHS) Trusts in England. Structural validity of translated questionnaires was assessed using confirmatory factor analysis. Diagnostic accuracy was explored in a subgroup of South Asians against ICD-10 categories using the Clinical Interview Schedule Revised (CIS-R) with receiver operating curve (ROC) analysis. RESULTS: 229 South Asian and 120 white-European HD patients participated. A single latent depression factor largely accounted for the correlations between items of the PHQ-9, CESD-R and BDI-II. Issues with measurement equivalence implied that scores on the translations may not be comparable with the English language versions. Against CIS-R based ICD-10 diagnosis of depression, sensitivity was modest across scales (50-66.7%). Specificity was higher (81.3-93.8%). Alternative screening cut-offs did not improve positive predictive values. CONCLUSIONS: Culturally adapted translations of depression screening questionnaires are useful to explore symptom endorsement amongst South Asian patients. However, data indicate that standard cut-off scores may not be appropriate to classify symptom severity. Use of the CIS-R algorithms for optimal case identification requires further exploration in this setting. Strategies to encourage recruitment of under-represented groups in renal research are also warranted, especially for in-depth discussions related to psychological care needs.

Analysing multimodal data that have been collected using photovoice as a research method.

BACKGROUND: Creative arts practice can enhance the depth and quality of mental health research by capturing and foregrounding participants' lived experience. Creative methods are emotionally activating and promote multiple perspectives, tolerating ambiguities and uncertainties, which are shared and even celebrated. KEY ARGUMENTS: Methods such as photovoice use imagery to elucidate narratives that are not easily captured by more traditional interview-based research techniques. However, the use of creative methods and participatory research remains novel as there is little guidance of how to navigate conceptual, practical, and analytical challenges. CONCLUSION: This paper considers these challenges, and puts forward practical and theory informed recommendations, using as study of photovoice methods for investigating ethnic inequalities in the use of the mental health act (Co-Pact) as a case study.

Using participatory action research methods to address epistemic injustice within mental health research and the mental health system.

In this paper, we describe a model of research practise that addresses epistemic injustice as a central objective, by valuing lived experience and addressing structural disadvantages. We set out here the processes we undertook, and the experiences of those involved in an attempt to transform research practise within a study known as Co-pact. We do not discuss the findings of the research. Rather, we wish to build expertise on how to address epistemic injustice and offer examples of participatory research processes, central values, and practical procedures that we implemented.

Experience-based investigation and codesign of approaches to prevent and reduce Mental Health Act use (CO-PACT): a protocol.

INTRODUCTION: The Independent Review of the Mental Health Act (MHA) in England and Wales confirmed increasing levels of compulsory detentions, especially for racialised communities. This research aims to: (a) understand the causes of and propose preventive opportunities to reduce the disproportionate use of the MHA, (b) use an adapted form of experience-based codesign (EBCD) to facilitate system-wide changes and (c) foreground the voices of service users at risk of detention to radically reform policy and implement new legislation to ensure the principles of equity are retained. METHODS AND ANALYSIS: This is a qualitative study, using a comparative case study design. This study is composed of five work packages; photovoice workshops will be conducted in eight local systems with service users and healthcare professionals separately (WP1); a series of three EBCD workshops in each local system to develop approaches that reduce detentions and improve the experience of people from racialised communities. This will inform a comparative analysis and national knowledge exchange workshop (WP2); an evaluation led by the patient and public involvement group to better understand what it is like for people to participate in photovoice, codesign and participatory research (WP3); an economic evaluation (WP4) and dissemination strategy (WP5). The impact of the involvement of patients and public will be independently evaluated. ETHICS AND DISSEMINATION: This study is sponsored by the University of Oxford and granted ethical approval from the NHS Research Ethics Committee and Health Research Authority (21/SC/0204). The outputs from this study will be shared through several local and national channels.

Identifying evidence of the effectiveness of photovoice: a systematic review and meta-analysis of the international healthcare literature.

BACKGROUND: Photovoice (PV) was conceptualized in the early 1990s to engage community members in capturing/communicating their lived experience narratives through photography. However, no meta-analyses in health research have assessed whether PV achieves its purported effects. METHODS: We carried forward any relevant references from a previous review identifying PV studies before 2008 and searched MEDLINE, Embase, PsycINFO and Cochrane Central Register of Controlled Trials from 2008 up until October 2019. We included both published and grey literature, in any population or context. We assessed quality with the Effective Public Health Practice Project's (EPHPP) tool and pooled studies using the standardized mean difference (SMD) and 95% confidence intervals (CIs). RESULTS: Twenty-eight studies were included, showing significant post-treatment effects only for health knowledge (SMD, 95% CIs = 0.41, 0.09 to 0.73, n = 16) and community functions (SMD, 95% CIs = 0.22, 0.03 to 0.40, n = 4). Strong heterogeneity was indicated for health knowledge, potentially explained by a larger effect in ethnic minority populations. There was insufficient follow-up data for health knowledge, while in follow-up for community functions the post-treatment effect was lost. CONCLUSIONS: PV's post-treatment effect on health knowledge did not translate into positive health behaviours or physical and mental health outcomes, longer-term community functions, or health service outcomes.

Feasibility and acceptability of transcranial stimulation in obsessive-compulsive symptoms (FEATSOCS): study protocol for a randomised controlled trial of transcranial direct current stimulation (tDCS) in obsessive-compulsive disorder (OCD).

BACKGROUND: Obsessive-compulsive disorder (OCD) is a neuropsychiatric disorder which often proves refractory to current treatment approaches. Transcranial direct current stimulation (tDCS), a noninvasive form of neurostimulation, with potential for development as a self-administered intervention, has shown potential as a safe and efficacious treatment for OCD in a small number of trials. The two most promising stimulation sites are located above the orbitofrontal cortex (OFC) and the supplementary motor area (SMA). METHODS: The aim of this feasibility study is to inform the development of a definitive trial, focussing on the acceptability, safety of the intervention, feasibility of recruitment, adherence and tolerability to tDCS and study assessments and the size of the treatment effect. To this end, we will deliver a double-blind, sham-controlled, crossover randomised multicentre study in 25 adults with OCD. Each participant will receive three courses of tDCS (SMA, OFC and sham), randomly allocated and given in counterbalanced order. Each course comprises four 20-min stimulations, delivered over two consecutive days, separated by at least 4 weeks' washout period. We will collect information about recruitment, study conduct and tDCS delivery. Blinded raters will assess clinical outcomes before, during and up to 4 weeks after stimulation using validated scales. We will include relevant objective neurocognitive tasks, testing cognitive flexibility, motor disinhibition, cooperation and habit learning. DISCUSSION: We will analyse the magnitude of the effect of the interventions on OCD symptoms alongside the standard deviation of the outcome measure, to estimate effect size and determine the optimal stimulation target. We will also measure the duration of the effect of stimulation, to provide information on spacing treatments efficiently. We will evaluate the usefulness and limitations of specific neurocognitive tests to determine a definitive test battery. Additionally, qualitative data will be collected from participants to better understand their experience of taking part in a tDCS intervention, as well as the impact on their overall quality of life. These clinical outcomes will enable the project team to further refine the methodology to ensure optimal efficiency in terms of both delivering and assessing the treatment in a full-scale trial. TRIAL REGISTRATION: ISRCTN17937049 . (date applied 08/07/2019). Recruitment (ongoing) began 23rd July 2019 and is anticipated to complete 30th April 2021.

Exercise and Use of Enhancement Drugs at the Time of the COVID-19 Pandemic: A Multicultural Study on Coping Strategies During Self-Isolation and Related Risks.

Introduction: Little is known about the impact of restrictive measures during the COVID-19 pandemic on self-image and engagement in exercise and other coping strategies alongside the use of image and performance-enhancing drugs (IPEDs) to boost performance and appearance. Objectives: To assess the role of anxiety about appearance and self-compassion on the practice of physical exercise and use of IPEDs during lockdown. Methods: An international online questionnaire was carried out using the Exercise Addiction Inventory (EAI), the Appearance Anxiety Inventory (AAI), and the Self-Compassion Scale (SCS) in addition to questions on the use of IPEDs. Results: The sample consisted of 3,161 (65% female) adults from Italy (41.1%), Spain (15.7%), the United Kingdom (UK) (12.0%), Lithuania (11.6%), Portugal (10.5%), Japan (5.5%), and Hungary (3.5%). The mean age was 35.05 years (SD = 12.10). Overall, 4.3% of the participants were found to engage in excessive or problematic exercise with peaks registered in the UK (11.0%) and Spain (5.4%). The sample reported the use of a wide range of drugs and medicines to boost image and performance (28%) and maintained use during the lockdown, mostly in Hungary (56.6%), Japan (46.8%), and the UK (33.8%), with 6.4% who started to use a new drug. Significant appearance anxiety levels were found across the sample, with 18.1% in Italy, 16.9% in Japan, and 16.7% in Portugal. Logistic regression models revealed a strong association between physical exercise and IPED use. Anxiety about appearance also significantly increased the probability of using IPEDs. However, self-compassion did not significantly predict such behavior. Anxiety about appearance and self-compassion were non-significant predictors associated with engaging in physical exercise. Discussion and Conclusion: This study identified risks of problematic exercising and appearance anxiety among the general population during the COVID-19 lockdown period across all the participating countries with significant gender differences. Such behaviors were positively associated with the unsupervised use of IPEDs, although no interaction between physical exercise and appearance anxiety was observed. Further considerations are needed to explore the impact of socially restrictive measures among vulnerable groups, and the implementation of more targeted responses.

Is psychosis a syndemic manifestation of historical and contemporary adversity? Findings from UK Biobank.

BACKGROUND: Psychosis is associated with many forms of adversity, deprivation and living in urban areas. AIMS: To investigate whether psychosis is part of a syndemic of multiple adversities. METHOD: Drawing on UK Biobank (UKBB) data (Project ID: 57601), we sought to understand mechanisms by which childhood, recent/contemporary and place-based adversities might cluster and interact to be implicated in pathways by which psychoses evolve. We investigated the associations between adversities, potential mediating inflammatory markers and ICD-10 diagnoses (F20-F31) of psychotic disorders. We fitted logistic regression models initially including all relevant candidate variables and used backwards deletion to retain theoretically plausible and statistically significant (P < 0.05) associations with psychotic disorders. The candidate variables were entered in a partial least squares structural equation model (PLS-SEM) to test for syndemic interactions between risk factors. We tested whether the findings were sensitive to demographics, gender and ethnicity. RESULTS: We fitted a PLS-SEM including psychosis as a syndemic outcome, and identified three latent constructs: lifetime adversity, current adversity and biomarkers. Factor loadings were above 0.30, and all structural paths were significant (P < 0.05). There were moderate associations between lifetime adversity and current adversity (standardised coefficient s.c. = 0.178) and between current adversity and biomarkers (s.c. = 0.227). All three latent constructs showed small but significant associations with psychosis (s.c. < 0.04). Lifetime adversity and current adversity were more strongly associated among ethnic minorities (combined) than White British people. CONCLUSIONS: Our findings stress the importance of interactions between childhood and contemporary adversities in preventive and therapeutic interventions for psychotic disorders, especially among ethnic minorities.

How do patients from South Asian backgrounds experience life on haemodialysis in the UK? A multicentre qualitative study.

OBJECTIVES: End-stage kidney disease disproportionately affects people of South Asian origin. This study aimed to uncover the lived experiences of this group of patients on centre-based haemodialysis (HD), the most prevalent dialysis modality. DESIGN: The study utilised a qualitative focus group methodology. Seven focus groups were conducted across four NHS Trusts in the UK including three in Gujarati and two each in Punjabi and Urdu. This provided an inclusive opportunity for South Asian patients to contribute in their language of origin. A total of 24 patients participated. Focus groups were facilitated by bilingual project workers and data were forward translated and analysed using thematic analysis. RESULTS: Four themes were identified. This included (1) 'treatment imposition', which comprised of the restrictive nature of HD, the effects of treatment and the feeling of being trapped in an endless process. (2) The 'patient-clinician relationship' centred around the impact of a perceived lack of staff time, and inadequacies in the quality of interactions. (3) 'Coping strategies' highlighted the role of cognitive reappraisal, living in the moment and family support networks in facilitating adjustment. (4) 'Pursuit of transplantation' included equating this form of treatment with restoring normality, alongside cultural factors limiting hopefulness for receiving an organ. CONCLUSIONS: In general, the experiences of South Asian patients receiving HD were not unique to this ethnic group. We did find distinct issues in relation to interactions with healthcare professionals, views on access to transplantation and the importance of family support networks. The study provides useful insights which may help enhance culturally tailored renal care.

The emergence of Exercise Addiction, Body Dysmorphic Disorder, and other image-related psychopathological correlates in fitness settings: A cross sectional study.

INTRODUCTION: In a society that perpetuates the strive for a perfect appearance, a fit body has become synonymous with success, but simultaneously hard to achieve. This represents a fertile ground for the development of Exercise Addiction (EA) alongside other disorders, such as Body Dysmorphic Disorder (BDD). This study aims to explore the diffusion of EA in fitness settings in the United Kingdom, Italy, Netherlands, Hungary and the previously unexplored association with appearance anxiety, BDD, self-esteem and the use of fitness supplements. METHODS: A large cross-sectional sample (N = 1711) was surveyed in fitness settings using the Exercise Addiction Inventory (EAI), Appearance Anxiety Inventory (AAI) and Rosenberg's Self Esteem Scale (RSE) in addition to questions surrounding the use of fitness supplements. RESULTS: Compulsive exercise, appearance anxiety and low self-esteem were present in this sample according to the psychometric measures used (EAI, AAI, RSE). 11.7% scored over the cut off for EA, with alarming peaks in the Netherlands (20.9%) and the United Kingdom (16.1%). 38.5% were found at risk of BDD, mainly female (47.2%). 39.8% used fitness enhancing supplements without medical consultation (95.5%). This cohort of supplement users scored higher in both EAI and AAI. The logistic regression model revealed a strong association between the consumption of sport products and the level of EA across the sample with an odds ratio (OR) of 3.03. Other co-variable factors among female were appearance anxiety (AAI; OR 1.59) and to a lesser extent self-esteem (RSE) (OR 1.08). CONCLUSIONS: This study identified a high risk of EA, appearance anxiety and BDD amongst a cohort of gym users internationally. The previously-unexplored association between these disorders and the unsupervised use of a variety of fitness products, including illicit drugs, highlights the need for informed and integrated responses targeting such vulnerable individuals.

The use of supplements and performance and image enhancing drugs in fitness settings: A exploratory cross-sectional investigation in the United Kingdom.

OBJECTIVE: The strive for perfection is prevalent in the fitness industry. This study aimed to explore the use of products to enhance performance alongside exposure to exercise addiction, appearance anxiety and self-esteem in fitness settings. METHODS: An online survey was prepared and piloted before wider dissemination in fitness clubs via snowballing and selected mailing lists. A list of commonly used products, including Performance and Image Enhancing Drugs (PIEDs) was provided. Exercise addiction (Exercise Addiction Inventory; EAI), anxiety levels (Appearance Anxiety Inventory; AAI) and their self-esteem (Rosenberg's Self-Esteem Scale; RSE) were also measured. RESULTS: 377 questionnaires were completed. A significant number of participants declared the use products either to lose weight (16%) or to reach their fitness goals (41%). The Internet played a major role in both the supply of information and the provision of the enhancement products (33.7%) and side effects were reported (10.5%). Only a limited number of participants sought a medical opinion about taking products (5.1%). EAI scores were high (m=20.02 ± 4.1), AAI (m=15.98 ± 4.8) showed an intermediate level of anxiety, while self-esteem was low (RSE m=12.59 ± 2.2). CONCLUSION: This pilot study identified the emergence of a new drug trend in fitness settings and showed a potential relationship to exercise addiction, anxiety disorders and low self-esteem. The Internet played a crucial role in disseminating often untested products, including PIEDs without medical supervision and unwanted side-effects were reported. More studies in the field are required in order to safeguard public health and inform policy making.

How do people of South Asian origin understand and experience depression? A protocol for a systematic review of qualitative literature.

INTRODUCTION: Individuals from Black and Asian Minority Ethnic (BAME) groups are less likely to receive a diagnosis and to engage with treatment for depression. This review aims to draw on international literature to summarise what is known about how people specifically of South Asian origin, migrants and non-migrants, understand and experience depressive symptoms. The resulting evidence base will further inform practices aimed at encouraging help-seeking behaviour and treatment uptake. METHODS AND ANALYSIS: A systematic review and thematic synthesis of qualitative literature conducted according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. Using predefined inclusion and exclusion criteria, electronic searches will be conducted across 16 databases. Study quality will be assessed using the Critical Appraisal Skills Programme (CASP). Data will be extracted independently by 2 reviewers. ETHICS AND DISSEMINATION: Ethical approval is not required. A comprehensive evidence base of how people from South Asian backgrounds conceptualise and experience depression will better inform the design and delivery of mental health initiatives and advance directions for future research. Findings will be published in a peer-reviewed journal, and disseminated through existing networks for professionals, researchers, patients and the public. TRIAL REGISTRATION NUMBER: CRD42015026120.