Mental health stigma at primary health care centres in Lebanon: qualitative study.

BACKGROUND: Mental health-related stigma is a global public health concern and a major barrier to seeking care. In this study, we explored the role of stigma as a barrier to scaling up mental health services in primary health care (PHC) centres in Lebanon. We focused on the experiences of Healthcare Providers (HCPs) providing services to patients with mental health conditions (MHCs), the views of policy makers, and the perceptions of stigma or discrimination among individuals with MHCs. This study was conducted as part of INDIGO-PRIMARY, a larger multinational stigma reduction programme. METHODS: Semi-structured qualitative interviews (n = 45) were carried out with policy makers (n = 3), PHC management (n = 4), PHC staff (n = 24), and service users (SUs) (n = 14) between August 2018 and September 2019. These interviews explored mental health knowledge, attitudes and behaviour of staff, challenges of providing treatment, and patient outcomes. All interviews were coded using NVivo and a thematic coding framework. RESULTS: The results of this study are presented under three themes: (1) stigma at PHC level, (2) stigma outside PHC centres, and (3) structural stigma. SUs did not testify to discrimination from HCPs but did describe stigmatising behaviour from their families. Interestingly, at the PHC level, stigma reporting differed among staff according to a power gradient. Nurses and social workers did not explicitly report incidents of stigma but described patients with MHCs as uncooperative, underscoring their internalized negative views on mental health. General practitioners and directors were more outspoken than nurses regarding the challenges faced with mental health patients. Mental health professionals revealed that HCPs still hold implicitly negative views towards patients with MHCs however their attitude has improved recently. Our analysis highlights five layers of stigma affecting SUs. CONCLUSION: This qualitative study reveals that stigma was still a key concern that affects patients with MHC. SUs reported experiencing overt stigmatising behaviour in the community but less explicit discrimination in a PHC setting. Our findings emphasise the importance of (1) combatting structural stigma through legal reform, (2) addressing interpersonal stigma, (3) committing PHC management to deliver high quality mental health integrated services, and (4) reducing intrapersonal stigma by building public empathy.

Perspectives of healthcare providers, service users, and family members about mental illness stigma in primary care settings: A multi-site qualitative study of seven countries in Africa, Asia, and Europe.

BACKGROUND: Stigma among healthcare providers is a barrier to the effective delivery of mental health services in primary care. Few studies have been conducted in primary care settings comparing the attitudes of healthcare providers and experiences of people with mental illness who are service users in those facilities. Such research is necessary across diverse global settings to characterize stigma and inform effective stigma reduction. METHODS: Qualitative research was conducted on mental illness stigma in primary care settings in one low-income country (Nepal), two lower-middle income countries (India, Tunisia), one upper-middle-income country (Lebanon), and three high-income countries (Czech Republic, Hungary, Italy). Qualitative interviews were conducted with 248 participants: 64 primary care providers, 11 primary care facility managers, 111 people with mental illness, and 60 family members of people with mental illness. Data were analyzed using framework analysis. RESULTS: Primary care providers endorsed some willingness to help persons with mental illness but reported not having appropriate training and supervision to deliver mental healthcare. They expressed that people with mental illness are aggressive and unpredictable. Some reported that mental illness is incurable, and mental healthcare is burdensome and leads to burnout. They preferred mental healthcare to be delivered by specialists. Service users did not report high levels of discrimination from primary care providers; however, they had limited expectations of support from primary care providers. Service users reported internalized stigma and discrimination from family and community members. Providers and service users reported unreliable psychiatric medication supply and lack of facilities for confidential consultations. Limitations of the study include conducting qualitative interviews in clinical settings and reliance on clinician-researchers in some sites to conduct interviews, which potentially biases respondents to present attitudes and experiences about primary care services in a positive manner. CONCLUSIONS: Primary care providers' willingness to interact with people with mental illness and receive more training presents an opportunity to address stigmatizing beliefs and stereotypes. This study also raises important methodological questions about the most appropriate strategies to accurately understand attitudes and experiences of people with mental illness. Recommendations are provided for future qualitative research about stigma, such as qualitative interviewing by non-clinical personnel, involving non-clinical staff for recruitment of participants, conducting interviews in non-clinical settings, and partnering with people with mental illness to facilitate qualitative data collection and analysis.

Effectiveness of arts interventions to reduce mental-health-related stigma among youth: a systematic review and meta-analysis.

BACKGROUND: Educational interventions engage youth using visual, literary and performing arts to combat stigma associated with mental health problems. However, it remains unknown whether arts interventions are effective in reducing mental-health-related stigma among youth and if so, then which specific art forms, duration and stigma-related components in content are successful. METHODS: We searched 13 databases, including PubMed, Medline, Global Health, EMBASE, ADOLEC, Social Policy and Practice, Database of Promoting Health Effectiveness Reviews (DoPHER), Trials Register of Promoting Health Interventions (TRoPHI), EPPI-Centre database of health promotion research (Bibliomap), Web of Science, PsycINFO, Cochrane and Scopus for studies involving arts interventions aimed at reducing any or all components of mental-health-related stigma among youth (10-24-year-olds). Risk of bias was assessed using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool for Quantitative Studies. Data were extracted into tables and analysed using RevMan 5.3.5. RESULTS: Fifty-seven studies met our inclusion criteria (n = 41,621). Interventions using multiple art forms are effective in improving behaviour towards people with mental health problems to a small effect (effect size = 0.28, 95%CI 0.08-0.48; p = 0.007) No studies reported negative outcomes or unintended harms. Among studies using specific art forms, we observed high heterogeneity among intervention studies using theatre, multiple art forms, film and role play. Data in this review are inconclusive about the use of single versus multiple sessions and whether including all stigma components of knowledge, attitude and behaviour as intervention content are more effective relative to studies focused on these stigma components, individually. Common challenges faced by school-based arts interventions included lack of buy-in from school administrators and low engagement. No studies were reported from low- and middle-income countries. CONCLUSION: Arts interventions are effective in reducing mental-health-related stigma to a small effect. Interventions that employ multiple art forms together compared to studies employing film, theatre or role play are likely more effective in reducing mental-health-related stigma.

Stigma associated with mental health problems among young people in India: a systematic review of magnitude, manifestations and recommendations.

BACKGROUND: Globally, 20% of young people experience mental disorders. In India, only 7.3% of its 365 million youth report such problems. Although public stigma associated with mental health problems particularly affects help-seeking among young people, the extent of stigma among young people in India is unknown. Describing and characterizing public stigma among young people will inform targeted interventions to address such stigma in India, and globally. Thus, we examined the magnitude and manifestations of public stigma, and synthesised evidence of recommendations to reduce mental-health-related stigma among young people in India. METHOD: A systematic review and meta-analysis of observational studies was conducted. Nine electronic databases were searched and 30 studies (n = 6767) met inclusion criteria. RESULTS: Most studies (66%) focused on youth training to become health professionals. One-third of young people display poor knowledge of mental health problems and negative attitudes towards people with mental health problems and one in five had actual/intended stigmatizing behavior (I2>=95%). Young people are unable to recognize causes and symptoms of mental health problems and believe that recovery is unlikely. People with mental health problems are perceived as dangerous and irresponsible, likely due to misinformation and misunderstanding of mental health problems as being solely comprised of severe mental disorders (e.g. schizophrenia). However, psychiatric labels are not commonly used/understood. CONCLUSION: Public education may use symptomatic vignettes (through relatable language and visuals) instead of psychiatric labels to improve young people's understanding of the range of mental health problems. Recommended strategies to reduce public stigma include awareness campaigns integrated with educational institutions and content relevant to culture and age-appropriate social roles.

"Is there a medicine for these tensions?" Barriers to treatment-seeking for depressive symptoms in rural India: A qualitative study.

Rationale and objective Fewer than 15% of adults who meet criteria for a depression diagnosis in India seek treatment for these symptoms. It is unclear whether this reflects limited supply of mental health services or lack of demand for medical intervention for these experiences. This paper aims to identify and describe self-reported barriers that contribute to this "treatment gap" in a rural district in central India, where depression treatment had recently become available in primary care facilities. METHOD: In this qualitative study we conducted in-depth interviews with 35 adults who screened positive for depression and who had not sought treatment for their condition, and 15 of their relatives. We analysed the data using the framework approach. RESULTS: A key barrier to seeking health care for psychological symptoms was lack of perceived need for treatment for these symptoms. Low perceived need for health interventions arose because participants frequently attributed depression-like symptoms to their socio-economic circumstances, or to the stress of physical illness, which conflicted with the biomedical approach associated with health services. Despite widespread recognition of the links between psychological symptoms, social circumstances and physical health, it was believed that health care providers are equipped to treat only somatic symptoms, which were commonly reported. CONCLUSIONS: Low demand for depression treatment reflected discrepancies between the community's perceived needs and a narrow biomedical model of mental health. Meeting their needs may require a radical change in approach that acknowledges the social determinants of distress, and the interactions between mental and physical health. The capabilities approach may provide a framework for more holistically conceptualising people's needs.

Longitudinal assessment of an anti-stigma campaign related to common mental disorders in rural India.

BACKGROUND: Stigma related to mental health and lack of trained mental health professionals is a major cause for an increased treatment gap, particularly in rural India. The Systematic Medical Appraisal, Referral and Treatment (SMART) Mental Health project delivered a complex intervention involving task sharing, an anti-stigma campaign and use of technology-based, decision-support tools to empower primary care workers to identify and manage depression, anxiety, stress and suicide risk.AimsThe aim of this article is to report changes in stigma perceptions over three time points in the rural communities where the anti-stigma campaign was conducted. METHOD: A multimedia-based anti-stigma campaign was conducted over a 3-month period in the West Godavari district of Andhra Pradesh, India. Following that, the primary care-based mental health service was delivered for 1 year. The anti-stigma campaign was evaluated in two villages and data were captured at three time points over a 24-month period (N = 1417): before and after delivery of the campaign and after completion of the health services delivery intervention. Standardised tools captured data on knowledge, attitude and behaviour towards mental health as well as perceptions related to help seeking for mental illnesses. RESULTS: Most knowledge, attitude and behaviour scores improved over the three time points. Overall mean scores on stigma perceptions related to help seeking improved by -0.375 (minimum/maximum of -2.7/2.4, s.d. 0.519, P < 0.001) during this time. Loss to follow-up was 10%. CONCLUSIONS: The data highlight the positive effects of an anti-stigma campaign over a 2-year period.Declaration of interestNone.

Development of the Family Stigma Stress Scale (FSSS) for Detecting Stigma Stress in Caregivers of People With Mental Illness.

People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS). Primary family caregivers of people with mental illness in Southern Taiwan ( n = 300; mean age = 53.08 ± 13.80; 136 males) completed the FSSS. An exploratory factor analysis showed that the FSSS score had two factors; both factor scores had excellent internal consistency (α = .913 and .814) and adequate test-retest reliability ( r = .627 and .533; n = 197). Significant correlations between FSSS factor scores and other instruments supported its concurrent validity and the ability of the FSSS to differentiate between clinical characteristics, for example, having been previously hospitalized or not. The FSSS is a brief and effective measure of the stigma stress of family caregivers of people with mental illness.

Perceived stigma of caregivers: Psychometric evaluation for Devaluation of Consumer Families Scale.

Background/Objective: The Devaluation of Consumer Families Scale (DCFS) is commonly used to measure perceived stigma towards family members of people with mental illness. However, its factorial structure has never been confirmed using confirmatory factor analysis (CFA). This study aimed to test the psychometric properties of the DCFS Taiwan version (DCFS-TW). Method: Family caregivers (N=511) completed the DCFS-TW (97 completed the DCFS again after 2 to 4 weeks) and other instruments. CFA, test-retest reliability, internal consistency, concurrent validity, and known-group validity were analyzed. Results: The three-factor structure of the DCFS-TW performed better than the one-factor structure. Test-retest reliability (r = .66) and internal consistency were satisfactory (α = .85); concurrent validity (absolute r = .20 to .58) was acceptable; known-group validity was supported by the significantly different DCFS-TW scores in clinical characteristics (had been vs. had not been hospitalized; had been vs. had not been compulsorily admitted). Conclusions: The DCFS-TW has decent psychometric properties and is suitable for health professionals to measure perceived stigma towards family members of people with mental illness.

Antecedentes/Objetivo: La Devaluation of Consumer Families Scale (DCFS) se usa comúnmente para medir el estigma percibido de los familiares de las personas con enfermedad mental. Sin embargo, su estructura factorial nunca ha sido confirmada mediante análisis factorial confirmatorio (AFC). El objetivo de este estudio era evaluar las propiedades psicométricas de la versión taiwanesa de la DCFS (DCFS-TW). Método: Los cuidadores familiares (N=511) completaron la DCFS-TW (97 de ellos completaron nuevamente la DCFS entre 2 y 4 semanas después) y otros instrumentos. El AFC, la fiabilidad test-retest, la consistencia interna, la validez concurrente y la validez de grupos conocidos fueron analizados. Resultados: La estructura de tres factores de la DCFS-TW ajustó mejor que la estructura unifactorial. La fiabilidad test-retest (r = .66) y la consistencia interna fueron satisfactorias (α = .85); la validez concurrente (absoluta r = .20 a .58) fue aceptable, la validez de grupos conocidos fue corroborada por las puntuaciones significativamente diferentes de la DCFS-TW en relación a las características clínicas (habían vs. no habían sido hospitalizados; habían vs. no habían sido internados obligatoriamente). Conclusiones: La DCFS-TW tiene propiedades psicométricas aceptables y es adecuada para que los profesionales de la salud midan el estigma percibido en los familiares de las personas con enfermedad mental.

Perceived stigma of caregivers: Psychometric evaluation for Devaluation of Consumer Families Scale / Estigma percibido en cuidadores: Evaluación psicométrica de la The Devaluation of Consumer Families Scale de las familias de consumidores

Background/Objective: The Devaluation of Consumer Families Scale (DCFS) is commonly used to measure perceived stigma towards family members of people with mental illness. However, its factorial structure has never been confirmed using confirmatory factor analysis (CFA). This study aimed to test the psychometric properties of the DCFS Taiwan version (DCFS-TW). Method: Family caregivers (N=511) completed the DCFS-TW (97 completed the DCFS again after 2 to 4 weeks) and other instruments. CFA, test-retest reliability, internal consistency, concurrent validity, and known-group validity were analyzed. Results: The three-factor structure of the DCFS-TW performed better than the one-factor structure. Test-retest reliability (r = .66) and internal consistency were satisfactory (alfa = .85); concurrent validity (absolute r = .20 to .58) was acceptable; known-group validity was supported by the significantly different DCFS-TW scores in clinical characteristics (had been vs. had not been hospitalized; had been vs. had not been compulsorily admitted). Conclusions: The DCFS-TW has decent psychometric properties and is suitable for health professionals to measure perceived stigma towards family members of people with mental illness

Antecedentes/Objetivo: La Devaluation of Consumer Families Scale (DCFS) se usa comúnmente para medir el estigma percibido de los familiares de las personas con enfermedad mental. Sin embargo, su estructura factorial nunca ha sido confirmada mediante análisis factorial confirmatorio (AFC). El objetivo de este estudio era evaluar las propiedades psicométricas de la versión taiwanesa de la DCFS (DCFS-TW). Método: Los cuidadores familiares (N=511) completaron la DCFS-TW (97 de ellos completaron nuevamente la DCFS entre 2 y 4 semanas después) y otros instrumentos. El AFC, la fiabilidad test-retest, la consistencia interna, la validez concurrente y la validez de grupos conocidos fueron analizados. Resultados: La estructura de tres factores de la DCFS-TW ajustó mejor que la estructura unifactorial. La fiabilidad test-retest (r = .66) y la consistencia interna fueron satisfactorias (alfa = .85); la validez concurrente (absoluta r = .20 a .58) fue aceptable, la validez de grupos conocidos fue corroborada por las puntuaciones significativamente diferentes de la DCFS-TW en relación a las características clínicas (habían vs. no habían sido hospitalizados; habían vs. no habían sido internados obligatoriamente). Conclusiones: La DCFS-TW tiene propiedades psicométricas aceptables y es adecuada para que los profesionales de la salud midan el estigma percibido en los familiares de las personas con enfermedad mental

Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India.

Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS-caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that 'high caregiver stigma' was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes ('others finding out', 'negative reactions' and 'negative feelings and views about the self') and other themes in the data. Findings highlight the need for interventions that address both the needs of PLS and their family caregivers. Qualitative data also illustrate the complexities surrounding the relationship between knowledge and stigma and suggest that providing 'knowledge about schizophrenia' may influence the process of stigmatisation in both positive and negative ways. We posit that educational interventions need to consider context-specific factors when choosing anti-stigma-messages to be conveyed. Our findings suggest that messages such as 'recovery is possible' and 'no-one is to blame' may be more helpful than focusing on bio-medical knowledge alone.

Evidence for effective interventions to reduce mental-health-related stigma and discrimination.

Stigma and discrimination in relation to mental illnesses have been described as having worse consequences than the conditions themselves. Most medical literature in this area of research has been descriptive and has focused on attitudes towards people with mental illness rather than on interventions to reduce stigma. In this narrative Review, we summarise what is known globally from published systematic reviews and primary data on effective interventions intended to reduce mental-illness-related stigma or discrimination. The main findings emerging from this narrative overview are that: (1) at the population level there is a fairly consistent pattern of short-term benefits for positive attitude change, and some lesser evidence for knowledge improvement; (2) for people with mental illness, some group-level anti-stigma inventions show promise and merit further assessment; (3) for specific target groups, such as students, social-contact-based interventions usually achieve short-term (but less clearly long-term) attitudinal improvements, and less often produce knowledge gains; (4) this is a heterogeneous field of study with few strong study designs with large sample sizes; (5) research from low-income and middle-income countries is conspicuous by its relative absence; (6) caution needs to be exercised in not overgeneralising lessons from one target group to another; (7) there is a clear need for studies with longer-term follow-up to assess whether initial gains are sustained or attenuated, and whether booster doses of the intervention are needed to maintain progress; (8) few studies in any part of the world have focused on either the service user's perspective of stigma and discrimination or on the behaviour domain of behavioural change, either by people with or without mental illness in the complex processes of stigmatisation. We found that social contact is the most effective type of intervention to improve stigma-related knowledge and attitudes in the short term. However, the evidence for longer-term benefit of such social contact to reduce stigma is weak. In view of the magnitude of challenges that result from mental health stigma and discrimination, a concerted effort is needed to fund methodologically strong research that will provide robust evidence to support decisions on investment in interventions to reduce stigma.

Under the banyan tree--exclusion and inclusion of people with mental disorders in rural North India.

BACKGROUND: Social exclusion is both cause and consequence of mental disorders. People with mental disorders (PWMD) are among the most socially excluded in all societies yet little is known about their experiences in North India. This qualitative study aims to describe experiences of exclusion and inclusion of PWMD in two rural communities in Uttar Pradesh, India. METHODS: In-depth interviews with 20 PWMD and eight caregivers were carried out in May 2013. Interviews probed experiences of help-seeking, stigma, discrimination, exclusion, participation, agency and inclusion in their households and communities. Qualitative content analysis was used to generate codes, categories and finally 12 key themes. RESULTS: A continuum of exclusion was the dominant experience for participants, ranging from nuanced distancing, negative judgements and social isolation, and self-stigma to overt acts of exclusion such as ridicule, disinheritance and physical violence. Mixed in with this however, some participants described a sense of belonging, opportunity for participation and support from both family and community members. CONCLUSIONS: These findings underline the urgent need for initiatives that increase mental health literacy, access to services and social inclusion of PWMD in North India, and highlight the possibilities of using human rights frameworks in situations of physical and economic violence. The findings also highlight the urgent need to reduce stigma and take actions in policy and at all levels in society to increase inclusion of people with mental distress and disorders.

Customising informed consent procedures for people with schizophrenia in India.

BACKGROUND: There is little information on how the ethical and procedural challenges involved in the informed participation of people with schizophrenia in clinical trials are addressed in low- and middle-income countries (LMICs). The informed consent procedure used in the collaborative community care for people with schizophrenia in India (COPSI) RCT was developed keeping these challenges in mind. We describe the feasibility of conducting the procedure from the trial, researcher and participants perspectives and describe the reasons for people consenting to participate in the trial or refusing to do so. METHODS: Three sources of information were used to describe the feasibility of the COPSI consent procedure: key process indicators for the trial perspective, data from a specially designed post-interview form for participant's observations and focus group discussion (FGD) with the research interviewers. Categorical data were analysed by calculating frequencies and proportions, while the qualitative data from the FGD, and the reasons for participation or refusal were analysed using a thematic content analysis approach. FINDINGS: 434 people with schizophrenia and their primary caregiver(s) were approached for participation in the trial. Consent interviews were conducted with 332, of whom 303 (91%) agreed to participate in the trial. Expectation of improvement was the most common reason for agreeing to participate in the trial, while concerns related to the potential disclosure of the illness, especially for women, were an important reason for refusing consent. CONCLUSIONS: The COPSI consent procedure demonstrates preliminary, observational information about the feasibility of customising informed consent procedures for people with schizophrenia LMIC contexts. This and other similar innovations need to be refined and rigorously tested to develop evidence-based guidelines for informed consent procedures in such settings.

Experiences of stigma and discrimination of people with schizophrenia in India.

Stigma contributes greatly to the burden of schizophrenia and is a major obstacle to recovery, yet, little is known about the subjective experiences of those directly affected in low and middle income countries. This paper aims to describe the experiences of stigma and discrimination of people living with schizophrenia (PLS) in three sites in India and to identify factors influencing negative discrimination. The study used mixed methods and was nested in a randomised controlled trial of community care for schizophrenia. Between November 2009 and October 2010, data on four aspects of stigma experienced by PLS and several clinical variables were collected from 282 PLS and 282 caregivers and analysed using multivariate regression. In addition, in-depth-interviews with PLS and caregivers (36 each) were carried out and analysed using thematic analysis. Quantitative findings indicate that experiences of negative discrimination were reported less commonly (42%) than more internalised forms of stigma experience such as a sense of alienation (79%) and significantly less often than in studies carried out elsewhere. Experiences of negative discrimination were independently predicted by higher levels of positive symptoms of schizophrenia, lower levels of negative symptoms of schizophrenia, higher caregiver knowledge about symptomatology, lower PLS age and not having a source of drinking water in the home. Qualitative findings illustrate the major impact of stigma on 'what matters most' in the lives of PLS and highlight three key domains influencing the themes of 'negative reactions' and 'negative views and feelings about the self', i.e., 'others finding out', 'behaviours and manifestations of the illness' and 'reduced ability to meet role expectations'. Findings have implications for conceptualising and measuring stigma and add to the rationale for enhancing psycho-social interventions to support those facing discrimination. Findings also highlight the importance of addressing public stigma and achieving higher level social and political structural change.

Effectiveness of a community-based intervention for people with schizophrenia and their caregivers in India (COPSI): a randomised controlled trial.

BACKGROUND: Observational evidence suggests that community-based services for people with schizophrenia can be successfully provided by community health workers, when supervised by specialists, in low-income and middle-income countries. We did the COmmunity care for People with Schizophrenia in India (COPSI) trial to compare the effectiveness of a collaborative community-based care intervention with standard facility-based care. METHODS: We did a multicentre, parallel-group, randomised controlled trial at three sites in India between Jan 1, 2009 and Dec 31, 2010. Patients aged 16-60 years with a primary diagnosis of schizophrenia according to the tenth edition of the International Classification of Diseases, Diagnostic Criteria for Research (ICD-10-DCR) were randomly assigned (2:1), via a computer-generated randomisation list with block sizes of three, six, or nine, to receive either collaborative community-based care plus facility-based care or facility-based care alone. Randomisation was stratified by study site. Outcome assessors were masked to group allocation. The primary outcome was a change in symptoms and disabilities over 12 months, as measured by the positive and negative syndrome scale (PANSS) and the Indian disability evaluation and assessment scale (IDEAS). Analysis was by modified intention to treat. This study is registered as an International Standard Randomised Controlled Trial, number ISRCTN 56877013. FINDINGS: 187 participants were randomised to the collaborative community-based care plus facility-based care group and 95 were randomised to the facility-based care alone group; 253 (90%) participants completed follow-up to month 12. At 12 months, total PANSS and IDEAS scores were lower in patients in the intervention group than in those in the control group (PANSS adjusted mean difference -3.75, 95% CI -7.92 to 0.42; p=0.08; IDEAS -0.95, -1.68 to -0.23; p=0.01). However, no difference was shown in the proportion of participants who had a reduction of more than 20% in overall symptoms (PANSS 85 [51%] in the intervention group vs 44 [51%] in the control group; p=0.89; IDEAS 75 [48%] vs 28 [35%]). We noted a significant reduction in symptom and disability outcomes at the rural Tamil Nadu site (-9.29, -15.41 to -3.17; p=0.003). Two patients (one in each group) died by suicide during the study, and two patients died because of complications of a road traffic accident and pre-existing cardiac disease. 18 (73%) patients (17 in the intervention group) were admitted to hospital during the course of the trial, of whom seven were admitted because of physical health problems, such as acute gastritis and vomiting, road accident, high fever, or cardiovascular disease. INTERPRETATION: The collaborative community-based care plus facility-based care intervention is modestly more effective than facility-based care, especially for reducing disability and symptoms of psychosis. Our results show that the study intervention is best implemented as an initial service in settings where services are scarce, for example in rural areas. FUNDING: Wellcome Trust.

The development of a lay health worker delivered collaborative community based intervention for people with schizophrenia in India.

BACKGROUND: Care for schizophrenia in low and middle income countries is predominantly facility based and led by specialists, with limited use of non-pharmacological treatments. Although community based psychosocial interventions are emphasised, there is little evidence about their acceptability and feasibility. Furthermore, the shortage of skilled manpower is a major barrier to improving access to these interventions. Our study aimed to develop a lay health worker delivered community based intervention in three sites in India. This paper describes how the intervention was developed systematically, following the MRC framework for the development of complex interventions. METHODS: We reviewed the lierature on the burden of schizophrenia and the treatment gap in low and middle income countries and the evidence for community based treatments, and identified intervention components. We then evaluated the acceptability and feasibility of this package of care through formative case studies with individuals with schizophrenia and their primary caregivers and piloted its delivery with 30 families. RESULTS: Based on the reviews, our intervention comprised five components (psycho-education; adherence management; rehabilitation; referral to community agencies; and health promotion) to be delivered by trained lay health workers supervised by specialists. The intervention underwent a number of changes as a result of formative and pilot work. While all the components were acceptable and most were feasible, experiences of stigma and discrimination were inadequately addressed; some participants feared that delivery of care at home would lead to illness disclosure; some participants and providers did not understand how the intervention related to usual care; some families were unwilling to participate; and there were delivery problems, for example, in meeting the targeted number of sessions. Participants found delivery by health workers acceptable, and expected them to have knowledge about the subject matter. Some had expectations regarding their demographic and personal characteristics, for example, preferring only females or those who are understanding/friendly. New components to address stigma were then added to the intervention, the collaborative nature of service provision was strengthened, a multi-level supervision system was developed, and delivery of components was made more flexible. Criteria were evolved for the selection and training of the health workers based on participants' expectations. CONCLUSIONS: A multi-component community based intervention, targeting multiple outcomes, and delivered by trained lay health workers, supervised by mental health specialists, is an acceptable and feasible intervention for treating schizophrenia in India.

Collaborative community based care for people and their families living with schizophrenia in India: protocol for a randomised controlled trial.

BACKGROUND: There is a large treatment gap with few community services for people with schizophrenia in low income countries largely due to the shortage of specialist mental healthcare human resources. Community based rehabilitation (CBR), involving lay health workers, has been shown to be feasible, acceptable and more effective than routine care for people with schizophrenia in observational studies. The aim of this study is to evaluate whether a lay health worker led, Collaborative Community Based Care (CCBC) intervention, combined with usual Facility Based Care (FBC), is superior to FBC alone in improving outcomes for people with schizophrenia and their caregivers in India. METHODS/DESIGN: This trial is a multi-site, parallel group randomised controlled trial design in India.The trial will be conducted concurrently at three sites in India where persons with schizophrenia will be screened for eligibility and recruited after providing informed consent. Trial participants will be randomly allocated in a 2:1 ratio to the CCBC+FBC and FBC arms respectively using an allocation sequence pre-prepared through the use of permuted blocks, stratified within site. The structured CCBC intervention will be delivered by trained lay community health workers (CHWs) working together with the treating Psychiatrist. We aim to recruit 282 persons with schizophrenia. The primary outcomes are reduction in severity of symptoms of schizophrenia and disability at 12 months. The study will be conducted according to good ethical practice, data analysis and reporting guidelines. DISCUSSION: If the additional CCBC intervention delivered by front line CHWs is demonstrated to be effective and cost-effective in comparison to usually available care, this intervention can be scaled up to expand coverage and improve outcomes for persons with schizophrenia and their caregivers in low income countries. TRIAL REGISTRATION: The trial is registered with the International Society for the Registration of Clinical Trials and the allocated unique ID number is ISRCTN 56877013.

Reducing the treatment gap for mental disorders: a WPA survey.

The treatment gap for people with mental disorders exceeds 50% in all countries of the world, approaching astonishingly high rates of 90% in the least resourced countries. We report the findings of the first systematic survey of leaders of psychiatry in nearly 60 countries on the strategies for reducing the treatment gap. We sought to elicit the views of these representatives on the roles of different human resources and health care settings in delivering care and on the importance of a range of strategies to increase the coverage of evidence-based treatments for priority mental disorders for each demographic stage (childhood, adolescence, adulthood and old age). Our findings clearly indicate three strategies for reducing the treatment gap: increasing the numbers of psychiatrists and other mental health professionals; increasing the involvement of a range of appropriately trained non-specialist providers; and the active involvement of people affected by mental disorders. This is true for both high income and low/middle income countries, though relatively of more importance in the latter. We view this survey as a critically important first step in ascertaining the position of psychiatrists, one of the most influential stakeholder communities in global mental health, in addressing the global challenge of scaling up mental health services to reduce the treatment gap.