Graham Thornicroft’s research while affiliated with The London College and other places

For several years stigma researchers in India have relied on Western instruments or semi-structured stigma scales in their studies. However, these scales have not been rigorously translated and adapted to the local cultural framework. In the current study, we describe the cultural adaptation of six stigma scales with the purpose of using it in the native language (Kannada) based on translation steps of forward translation, expert review and synthesis, cultural equivalence, back translation and cognitive interview processes. Several items were modified in the target language at each stage of the cultural adaptation process as mentioned in the above steps across all scales. Cultural explanations for the same have been provided. Concepts such as “community forest” and “baby sitting" was replaced with equivalent native synonyms. We introduced native cultural and family values such as “joint family system” and modified the item of housing concept in one of the tools. The concept of “privacy” in the Indian rural context was observed to be familial than individual-based and modification of corresponding items according to the native context of “privacy”. Finally, items from each scale were modified but retained without affecting the meaning and the core construct.

Aim HOPE (National Institute for Health and Care Research Global Health Research Group on Homelessness and Mental Health in Africa) aims to develop and evaluate interventions that address the unmet needs of people who are homeless and have severe mental illness (SMI) living in three African countries in ways that are rights-based, contextually grounded, scalable and sustainable. Methods We will work in the capital city (Addis Ababa) in Ethiopia, a regional city (Tamale) in Ghana, and the capital city (Nairobi) and a rural county (Makueni) in Kenya to understand different approaches to intervention needed across varied settings. Formative work will include synthesis of global evidence (systematic review, including grey literature, and a Delphi consensus exercise) on interventions and approaches to improving outcomes for people who are homeless and have SMI. We will map contexts; conduct a focused ethnographic study to understand lived experiences of homelessness and SMI; carry out a cross-sectional survey of people who are homeless (n=750 in Ghana and Ethiopia; n=350 in Kenya) to estimate prevalence of SMI and identify prioritised needs; and conduct in-depth interviews and focus group discussions with key stakeholders to understand experiences, challenges and opportunities for intervention. This global and local evidence will feed into Theory of Change workshops with stakeholders to establish agreement about valued primary outcomes, map pathways to impact and inform selection and implementation of interventions. Intervention packages to address prioritised needs will be co-produced, piloted in each country with people who are homeless and have SMI, and will be optimised for feasibility and acceptability using participatory action research. We will use rights-based approaches and focus on community-based care to ensure sustainability. Realist approaches will be employed to analyse how contextual variation affects mechanisms and outcomes to inform methods for a subsequent evaluation of larger scale implementation. Extensive capacity strengthening activities will focus on equipping early career researchers and peer researchers. People with lived experience of SMI and policymakers are an integral part of the research team. Community engagement is supported by working closely with multi-sectoral Community Advisory Groups. Conclusions HOPE will develop evidence to support action to respond to the needs and preferences of people who are homeless and have SMI in diverse settings in Africa. We are creating a new partnership of researchers, policy makers, community members and people with lived experience of SMI and homelessness to lead this work in and for the Global South.

Objectives: This work was aimed at characterizing the experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia. Methods: Data from 704 people living with dementia who took part in a global survey from 33 different countries and territories were analysed. Psychometric properties were examined, including internal consistency and construct validity. Results: A total of 83% of participants reported discrimination in one or more areas of life, and this was similar across WHO Regions. The exploratory factor analysis factor loadings and scree plot supported a unidimensional structure for the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). The instrument demonstrated excellent internal consistency, with most of the construct validity hypotheses being confirmed and qualitative responses demonstrating face validity. Conclusions: The DISCUS-Dementia performs well with a global sample of people living with dementia. This scale can be integrated into large-scale studies to understand factors associated with stigma and discrimination. It can also provide an opportunity for a structured Discussion around stigma and discrimination experiences important to people living with dementia, as well as planning psychosocial services and initiatives to reduce stigma and discrimination.

Background Stigma and discrimination towards people with mental health conditions by their communities are common worldwide. This can result in a range of negative outcomes for affected persons, including poor access to health care. However, evidence is still patchy from low- and middle-income countries (LMICs) on affordable, community-based interventions to reduce mental health-related stigma and to improve access to mental health care. Methods This study aims to conduct a feasibility (proof-of-principle) pilot study that involves developing, implementing and evaluating a community-based, multi-component, awareness-raising intervention (titled Indigo-Local), designed to reduce stigma and discrimination and to increase referrals of people with mental health conditions for assessment and treatment. It is being piloted in seven sites in five LMICs—China, Ethiopia, India, Nepal and Tunisia—and includes several key components: a stakeholder group workshop; a stepped training programme (using a ‘Training of Trainers’ approach) of community health workers (or similar cadres of workers) and service users that includes repeated supervision and booster sessions; community engagement activities; and a media campaign. Social contact and service user involvement are instrumental to all components. The intervention is being evaluated through a mixed-methods pre-post study design that involves quantitative assessment of stigma outcomes measuring knowledge, attitudes and (discriminatory) behaviour; quantitative evaluation of mental health service utilization rates (optional, where feasible in sites); qualitative exploration of the potential effectiveness and impact of the Indigo-Local intervention; a process evaluation; implementation evaluation; and an evaluation of implementation costs. Discussion The output of this study will be a contextually adapted, evidence-based intervention to reduce mental health-related stigma in local communities in five LMICs to achieve improved access to healthcare. We will have replicable models of how to involve people with lived experience as an integral part of the intervention and will produce knowledge of how intervention content and implementation strategies vary across settings. The intervention and its delivery will be refined to be feasible and ready for larger-scale implementation and evaluation. This study thereby has the potential to make an important contribution to the evidence base on what works to reduce mental health-related stigma and discrimination and improve access to health care.

Background The Narrative Experiences Online (NEON) Intervention provides self-managed web-based access to mental health recovery narratives (n = 659). We evaluated effectiveness and cost-effectiveness in improving quality of life for adults resident in England with mental health problems and recent psychosis experience. Methods Prospectively registered pragmatic parallel-group randomised trial controlling for usual care, recruiting from statutory mental health services and through community engagement activities, with a 52-week primary endpoint (ISRCTN11152837). All trial procedures and the NEON Intervention were delivered by an integrated web-application. Randomisation was through an independently generated list (no stratification). Allocation was masked for statistical staff and the Chief Investigator but not participants. Intervention arm participants received immediate NEON Intervention access. Control arm participants received access after completing primary endpoint questionnaires. The primary outcome was quality of life through the Manchester Short Assessment (MANSA). Serious Adverse Events (SAEs) were collected through web-based safety report forms and identified from health service usage data. The primary analysis was by a prospectively described Intention To Treat principle excluding participants who had registered multiple times, with multiple imputation for missing data. Findings Between 9 March 2020 and 1 March 2021, 739 participants were randomised (intervention:370; control: 369), providing more than 90% power to detect a baseline-adjusted difference of 0.25 in the MANSA score. Mean age was 34.8 years (standard deviation (SD) 12.0), 561 (75.9%) were white British, 443 (59.9%) were female, 609 (82.4%) had accessed specialist care mental health services, and 698 (94.5%) had accessed primary care mental health services. Mean baseline MANSA score was 3.7 for control and intervention arms (SD 0.9 and 1.0). 565 (76.5%) participants provided primary endpoint MANSA data with a mean score of 4.1 (SD 1.0) for both arms. We found no significant difference in Quality of Life between the two arms at the primary endpoint (baseline-adjusted difference 0.07, 95% CI −0.07 to 0.21, p = 0.35). The incremental cost-effectiveness ratio (£110,501 per quality-adjusted life-year (QALY)) exceeded the prospectively defined cost-effectiveness threshold (£30,000 per QALY). 158 (42.8%) control arm and 194 (52.4%) intervention arm participants accessed narratives outside of the NEON Intervention. There were no related serious adverse events (SAEs). 116 unrelated SAEs were reported by control arm participants, and 107 by intervention arm participants. Interpretation Our findings do not indicate NEON Intervention access for all people with psychosis experience. Future research should consider a) evaluation with current mental health services users; b) optimisation to enable users to find hope-promoting narratives. Funding 10.13039/501100000272National Institute for Health and Care Research (NIHR).

Introduction Mental health-related structural stigma is a multifaceted issue that significantly impacts access to quality mental healthcare, particularly in low-resource settings like Nepal. Therefore, there is a clear need to understand the complexities and identify gaps for targeted interventions through evaluations of various dimensions of structural stigma within healthcare systems. This study aimed to assess the feasibility and applicability of a mental health-related structural stigma measurement framework through its implementation in Nepal’s healthcare system. Methods A mixed-methods approach was employed, involving data mapping, key informant interviews, and rating exercises with diverse stakeholders, including policymakers, health workers, and people with lived experience (PWLEs). A visual analogue scale or Red/Amber/Green (RAG) rating scale was used to rate each indicator within the framework for the level of structural stigma based on the mapped information and their experiences. Results Twenty key informants were interviewed for this exercise. Most indicators within the framework were endorsed as yellow, followed by red by participants referring to mid to high levels of structural stigma within the healthcare system. The findings also revealed that the stakeholders perceived the framework as acceptable and applicable for measuring mental health-related structural stigma in the healthcare system. However, challenges were noted regarding the clarity of some indicators, limitations of the 3-coloured visual analogue rating, and the need for comparator conditions. Conclusion The study underscores the measurement framework's value as a tool for identifying and addressing structural stigma in a mental healthcare system in a low-resource setting. Stakeholder engagement and contextual adaptation are crucial for its successful implementation. The insights gained can inform structural reforms and improve mental health service delivery, ultimately promoting greater equity and access for PWLEs.

Importance More than 150 million people in India need mental health care but few have access to affordable care, especially in rural areas. Objective To determine whether a multifaceted intervention involving a digital health care model along with a community-based antistigma campaign leads to reduced depression risk and lower mental health–related stigma among adults residing in rural India. Design, Setting, and Participants This parallel, cluster randomized, usual care–controlled trial was conducted from September 2020 to December 2021 with blinded follow-up assessments at 3, 6, and 12 months at 44 rural primary health centers across 3 districts in Haryana and Andhra Pradesh states in India. Adults aged 18 years and older at high risk of depression or self-harm defined by either a Patient Health Questionnaire–9 item (PHQ-9) score of 10 or greater, a Generalized Anxiety Disorder–7 item (GAD-7) score of 10 or greater, or a score of 2 or greater on the self-harm/suicide risk question on the PHQ-9. A second cohort of adults not at high risk were selected randomly from the remaining screened population. Data were cleaned and analyzed from April 2022 to February 2023. Interventions The 12-month intervention included a community-based antistigma campaign involving all participants and a digital mental health intervention involving only participants at high risk. Primary health care workers were trained to identify and manage participants at high risk using the Mental Health Gap Action Programme guidelines from the World Health Organization. Main Outcomes and Measures The 2 coprimary outcomes assessed at 12 months were mean PHQ-9 scores in the high-risk cohort and mean behavior scores in the combined high-risk and non–high-risk cohorts using the Mental Health Knowledge, Attitude, and Behavior scale. Results Altogether, 9928 participants were recruited (3365 at high risk and 6563 not at high risk; 5638 [57%] female and 4290 [43%] male; mean [SD] age, 43 [16] years) with 9057 (91.2%) followed up at 12 months. Mean PHQ-9 scores at 12 months for the high-risk cohort were lower in the intervention vs control groups (2.77 vs 4.48; mean difference, −1.71; 95% CI, −2.53 to −0.89; P < .001). The remission rate in the high-risk cohort (PHQ-9 and GAD-7 scores <5 and no risk of self-harm) was higher in the intervention vs control group (74.7% vs 50.6%; odds ratio [OR], 2.88; 95% CI, 1.53 to 5.42; P = .001). Across both cohorts, there was no difference in 12-month behavior scores in the intervention vs control group (17.39 vs 17.74; mean difference, −0.35; 95% CI, −1.11 to 0.41; P = .36). Conclusions and Relevance A multifaceted intervention was effective in reducing depression risk but did not improve intended help-seeking behaviors for mental illness. Trial Registration Clinical Trial Registry India: CTRI/2018/08/015355 .

Background: To improve access to mental health care for children and adolescents, it is necessary to identify the barriers faced by their caregivers. The aim of this study is to identify these barriers in Greece and to investigate the reliability and validity of the modified version of the Barriers to Access to Care Evaluation scale (BACE) - the BACE Proxy Report (BACE-PR). Methods: A total of 265 caregivers completed the BACE-PR. Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA) were used to investigate the factor structure of the instrument. Item parameters were assessed via Item Response Theory. Interpretability was assessed by linking summed scores to IRT-based scores. Results: Caregivers reported care costs as the major barrier to access. Obsessive compulsive symptoms and self-harm were the conditions for which caregivers reported the highest level of barriers. EFA and CFA suggested that a one-factor solution fit the data well (RMSEA = 0.048, CFI = 0.991, TLI = 0.990). Internal consistency was found to be high (ω=0.96). Average z-scores provided five meaningful levels of caregivers perceived barriers compared to the national average. Conclusions: Caregivers face a variety of barriers to access mental health care for their children and this could partly explain the treatment gap in the Greek mental health sector. Our study provides evidence for the reliability and validity of the BACE-PR scale, which can aid to identify caregiver-perceived barriers and to design interventions to improve access to mental health care.