Qualitative study to explore the perspectives and mental health experiences of first episode psychosis patients and their caregivers in North India.

BACKGROUND: The onset of psychosis brings unfamiliar experiences that can be disturbing for patients and their caregivers. Few studies from India (only one from North India) have examined these experiences from the perspective of the patient and caregiver. We explored experiences of first episode psychosis (FEP) patients and their caregivers within a North Indian context. METHOD: Semi-structured interviews were conducted in 2019 with ten FEP patients and their caregivers (total n=20) receiving out-patient care in a tertiary care centre. Topic guides focused on concerns/complaints, symptoms, help-seeking, and barriers and facilitators to treatment. Interviews were audio recorded, transcribed, and analysed using qualitative content analysis. RESULTS: Main categories of responses from patients and caregivers included: initial complaints for seeking help, initial emotional response, barriers to seeking treatment, perceived dysfunction and improvement, experienced stigma, understanding about illness, early follow-up, preventive measures and awareness programs. Caregivers undergo myriad of emotional reactions including anger, anxiety, guilt, and confusion. Symptoms other than psychotic symptoms were the primary complaint upon seeking help, and there was lack of understanding about the psychosocial model of care (role of medications acknowledged with little awareness regarding psychosocial interventions in recovery). Persisting occupational dysfunction despite perceived symptomatic improvement was described by both patients and caregivers. CONCLUSION: North Indian patients with FEP lack awareness of symptoms. Therefore, onus for seeking help often falls on their caregivers. Psychoeducation from first contact with services and increasing awareness about psychotic illness within the community might help address lack of awareness about symptoms, mental health services, early signs of relapse, and importance of psychosocial interventions in achieving functional recovery.

Pilot study to test the feasibility and clinical efficacy of a psychosocial care programme for patients with psychosis in low-resource settings.

BACKGROUND: Home-based psychosocial care has the potential to improving outcomes in patients with schizophrenia and related disorders (SCZ). There is lack of India data for such care in early psychosis. We developed the "Saksham" programme, a bespoke self-managed home-based psychosocial care model, available in two formats: manual-based and mobile-application based. With the anticipated success of recruitment of early psychosis cases in our setting, we plan to test the such intervention in this population in future trials. AIM: To assess the feasibility of the Saksham programme intervention in people with SCZ and its clinical efficacy as an adjunct to treatment as usual. METHODS: Seventy-five patient-caregiver pairs (total n=150) were recruited. Patients received either: treatment-as-usual (TAU) (n=25), manual-based Saksham intervention+TAU (n=25), or app-based Saksham intervention+TAU (n=25). Feasibility (i.e. acceptability, practicality, demand, implementation and integration) was assessed at three-months. Participants were assessed for psychopathology, illness-severity, cognition, functioning, disability, and caregiver-coping at baseline, one-month, and three-month. The percentage changes over time were compared across three groups. RESULTS: More found the mobile application-based intervention acceptable and easy-to-use than the manual-based intervention (92 % vs 68 %, and 76 % vs 68 %, respectively). Psychopathology and caregiver-burden improved significantly in all three groups (p<0.05). Cognition, disability, functioning, and caregiver burden improved significantly in the two Saksham intervention groups, with greater improvement in the Saksham app group (p<0.05). CONCLUSION: Home-based intervention is feasible and acceptable in a low-resource setting, with preliminary evidence for effectiveness. These findings need corroboration with randomised controlled trials in early psychosis to ameliorate course of illness.

Effectiveness of a mental health literacy module on stigma related mental health knowledge and behaviour among youth in two educational settings in Chennai, South India: A quasi-experimental study.

BACKGROUND: Improving mental health literacy (MHL) can reduce stigma towards mental illness, decreasing delays in help-seeking for mental disorders such as psychosis. We aimed to develop and assess the impact of an interactive MHL intervention on stigma related mental health knowledge and behaviour (SRMHKB) among youth in two urban colleges in South India. METHODS: Incorporating input from stakeholders (students, teachers, and mental health professionals), we developed a mental health literacy module to address SRMHKB. The module was delivered as an interactive session lasting 90 min. We recruited 600 (300 males; 300 females; mean age 19.6) participants from two city colleges in Chennai from Jan-Dec 2019 to test the MHL module. We assessed SRMHKB before the delivery of the MHL intervention, immediately after, and at 3 and 6 months after the intervention using the Mental Health Knowledge Schedule (MAKS) and Reported and Intended Behaviour Scale (RIBS). We used generalised estimating equations (GEE) to assess the impact of the intervention over time. RESULTS: Compared to baseline, there was a statistically significant increase in stigma related knowledge and behaviour immediately after the intervention (coefficient=3.8; 95% CI: 3.5,4.1) and during the 3-month (coefficient=3.4; 95% CI: 3.0,3.7) and 6-month (coefficient=2.4; 95% CI: 2.0,2.7) follow-up. CONCLUSION: Preliminary findings suggest that a single 90-minute MHL interactive session could lead to improvements in SRMHKB among youth in India. Future research might utilise randomised controlled trials to corroborate findings, and explore how improvements can be sustained over the longer-term.

Protocol-based assessment and management of first episode psychosis: Comparison of short and medium-term outcomes in psychopathology, quality of life, functioning and family burden across two sites in India.

BACKGROUND: Standard assessment and management protocols exist for first episode psychosis (FEP) in high income countries. Due to cultural and resource differences, these need to be modified for application in low-and middle-income countries. AIMS: To assess the applicability of standard assessment and management protocols across two cohorts of FEP patients in North and South India by examining trajectories of psychopathology, functioning, quality of life and family burden in both. METHOD: FEP patients at two sites (108 at AIIMS, North India, and 115 at SCARF, South India) were assessed using structured instruments at baseline, 3, 6 and 12 months. Standard management protocols consisted of treatment with antipsychotics and psychoeducation for patients and their families. Generalised estimating equation (GEE) modelling was carried out to test for changes in outcomes both across and between sites at follow-up. RESULTS: There was an overall significant improvement in both cohorts for psychopathology and other outcome measures. The trajectories of improvement differed between the two sites with steeper improvement in non-affective psychosis in the first three months at SCARF, and affective symptoms in the first three months at AIIMS. The reduction in family burden and improvement in quality of life were greater at AIIMS than at SCARF during the first three months. CONCLUSIONS: Despite variations in cultural contexts and norms, it is possible to implement FEP standard assessment and management protocols in North and South India. Preliminary findings indicate that FEP services lead to significant improvements in psychopathology, functioning, quality of life, and family burden within these contexts.

Development and validation of home-based psychosocial self-management interventions in schizophrenia and related disorders in low-resource settings: A mixed methods approach.

Background: Psychosocial interventions, crucial for recovery in patients with schizophrenia, have often been developed and tested in high income countries. We aimed at developing and validating home-based a booklet based psycho-social intervention with inputs from stakeholders: patients, families, and mental health professionals (MHP) for patients with schizophrenia and related disorders in low resource settings. Methods: We developed a preliminary version of psychosocial intervention booklets based on six themes derived from focus group discussions conducted with patients, families, and MHP. Initially, quantitative assessment of content validity was done by MHP on overall and Content Validity Index of individual items of the specific booklets, followed by in-depth interviews about their views. The booklets were modified based on their inputs. Further, pilot testing of manuals was done on the users - nine pairs of patients and caregivers followed by development of a final version of psycho-social intervention. Results: The percentage content validity of individual modules and overall booklets was ≥78.5% indicating good validity. Most MHP reported that the manuals were relevant and easy to use but were text-heavy, and lengthy. On pilot testing of modified manuals with patients and their family caregivers, majority (77.8%) of them found booklets useful and suggested that there should be separate booklets for both patients and caregivers for providing information and entering separate response for the activities, integrating helpful tips. Language should be simple. Finally, two sets of booklets ("info book" and "workbook") named 'Saksham' (meaning empowered) were created with specific modules (viz., 'Medicine adherence', 'Daily routine', 'Eating right', 'Physical activity', 'Physical health monitoring', 'Self-reliance', and 'Psychoeducation') for patients and caregivers each, in two languages (Hindi and English). Conclusion: Booklets with modules for psychosocial interventions for patients with schizophrenia and their caregivers were developed after establishing content validity and pilot testing.

Designing and implementing a physical exercise intervention for people with first episode psychosis using experience-based co-design: A pilot study from Chennai, India.

BACKGROUND: Physical exercise can improve outcomes for people with first-episode psychosis (FEP). Co-designing physical exercise interventions with end users has the potential to enhance their acceptability, feasibility, and long-term viability. This study's objective was to use experience-based co-design (EBCD) methodology to develop a physical exercise intervention for FEP, and pilot test it. METHODS: The study was conducted at the Schizophrenia Research Foundation's FEP program in Chennai, India. Participants(N=36) were individuals with FEP and their caregivers, mental health professionals (MHPs, and physical training experts. EBCD methodology included one-to-one interviews, focus group discussions, joint conferences, and co-design workshops. Two instructional videos were developed. Twelve FEP patients engaged in physical exercise with help of the videos over three months. They were followed up through weekly phone calls and in-person interviews to capture data on regularity, frequency, location of exercise, and comfort levels. RESULTS: Several touch points emerged from the interviews, focus groups, and joint meetings including lack of motivation, knowledge about physical exercise; differing perspectives about physical exercise; limited resource, and time constraints. Two instructional videos demonstrating activities for participants incorporated strategies that addressed these touch points. Pilot data indicated that participants engaged with the physical exercise intervention over 3 months. CONCLUSION: This was the first study to use co-design methodology to design a physical exercise intervention for first-episode psychosis. The intervention may have therefore been responsive to stakeholder needs and preferences. Results of this study highlight the potential of co-design in designing and adapting interventions. There is need for rigorous testing with larger samples.

Pathways to care in first-episode psychosis in low-resource settings: Implications for policy and practice.

OBJECTIVE: Developing countries such as India face a major mental health care gap. Delayed or inadequate care can have a profound impact on treatment outcomes. We compared pathways to care in first episode psychosis (FEP) between North and South India to inform solutions to bridge the treatment gap. METHODS: Cross-sectional observation study of 'untreated' FEP patients (n = 177) visiting a psychiatry department in two sites in India (AIIMS, New Delhi and SCARF, Chennai). We compared duration of untreated psychosis (DUP), first service encounters, illness attributions and socio-demographic factors between patients from North and South India. Correlates of DUP were explored using logistic regression analysis (DUP ≥ 6 months) and generalised linear models (DUP in weeks). RESULTS: Patients in North India had experienced longer DUP than patients in South India (ß = 17.68, p < 0.05). The most common first encounter in North India was with a faith healer (45.7%), however, this contact was not significantly associated with longer DUP. Visiting a faith healer was the second most common first contact in South India (23.6%) and was significantly associated with longer DUP (Odds Ratio: 6.84; 95% Confidence Interval: 1.77, 26.49). Being in paid employment was significantly associated with shorter DUP across both sites. CONCLUSIONS: Implementing early intervention strategies in a diverse country like India requires careful attention to local population demographics; one size may not fit all. A collaborative relationship between faith healers and mental health professionals could help with educational initiatives and to provide more accessible care.

Managing mental health crises in dental practice.

This paper aims to summarise current evidence and practice relating to mental health crises within dental practice. We review cases occurring within our practice, including management and lessons learnt. We then aim to provide a practical guide to manage such crises.

Developing an Intervention to Improve Occupational Participation for Justice-Involved People with a Personality Disorder: Defining and Describing Intervention Components.

Occupational participation is undertaking personally meaningful and socially valued activities and roles. It is an important outcome for health and justice interventions, as it is integral to health and desistance. We report the third of a four-stage research project to develop an intervention to improve occupational participation for justice-involved people with a personality disorder in the community. We completed a Delphi survey to produce expert consensus on intervention components and their content, ascertain participant ratings of 28 factors for their level of influence on occupational participation, and the modifiability of the factors with this population. Thirty multi-disciplinary participants completed three survey rounds. Most factors were rated very influential, but few were considered easily modifiable. Participants agreed 121 statements describing intervention components and content. Twenty-seven statements did not reach consensus. In targeting specific factors in intervention, practitioners must balance their degree of influence with potential modifiability. The results will inform intervention manualization and modeling.

Warwick-India-Canada (WIC) global mental health group: rationale, design and protocol.

INTRODUCTION: The primary aim of the National Institute of Health Research-funded global health research group, Warwick-India-Canada (WIC), is to reduce the burden of psychotic disorders in India. India has a large pool of undetected and untreated patients with psychosis and a treatment gap exceeding 75%. Evidence-based packages of care have been piloted, but delivery of treatments still remains a challenge. Even when patients access treatment, there is minimal to no continuity of care. The overarching ambition of WIC programme is to improve patient outcomes through (1) developing culturally tailored clinical interventions, (2) early identification and timely treatment of individuals with mental illness and (3) improving access to care by exploiting the potential of digital technologies. METHODS AND ANALYSIS: This multicentre, multicomponent research programme, comprising five work packages and two cross-cutting themes, is being conducted at two sites in India: Schizophrenia Research Foundation, Chennai (South India) and All India Institute of Medical Sciences, New Delhi (North India). WIC will (1) develop and evaluate evidence-informed interventions for early and first-episode psychosis; (2) determine pathways of care for early psychosis; (3) investigate the efficacy and cost-effectiveness of community care models, including digital and mobile technologies; (4) develop strategies to reduce the burden of mental illnesses among youth; (5) assess the economic burden of psychosis on patients and their carers; and (6) determine the feasibility of an early intervention in psychosis programme in India. ETHICS AND DISSEMINATION: This study was approved by the University of Warwick's Biomedical and Scientific Research Ethics Committee (reference: REGO-2018-2208), Coventry, UK and research ethics committees of all participating organisations. Research findings will be disseminated through peer-reviewed scientific publications, presentations at learnt societies and visual media.

Corrigendum: The Forensic Restrictiveness Questionnaire: Development, Validation, and Revision.

[This corrects the article DOI: 10.3389/fpsyt.2019.00805.].

Perceptions of Restrictiveness in Forensic Mental Health: Do Demographic, Clinical, and Legal Characteristics Matter?

Where safe, forensic mental health systems should provide care in the least restrictive environment possible. Doing so can maximize patient autonomy and empowerment while minimizing unnecessary social disconnection and stigmatization. This study investigated whether patients' perceptions of restrictiveness were associated with demographic, clinical, and legal characteristics. The Forensic Restrictiveness Questionnaire (FRQ) was used to measure perceptions of restrictiveness in 235 patients in low-, medium-, and high-secure settings in England. The results showed that restrictiveness scores were significantly higher for patients who experienced an adverse event in the past week or were diagnosed with a personality disorder compared to those with a mental illness. A regression analysis suggested that only diagnosis was predictive of FRQ scores when controlling for perceptions of ward atmosphere and quality of life. Age, length of stay, ethnicity, level of security, legal section, and offence type were not associated with FRQ scores. Future research should investigate the roles that individual symptoms, insight into illness, mood, personality, and expectations of care have in influencing perceptions of restrictiveness.

The prevalence of personality disorders in the community: a global systematic review and meta-analysis.

BACKGROUND: Personality disorders are now internationally recognised as a mental health priority. Nevertheless, there are no systematic reviews examining the global prevalence of personality disorders. AIMS: To calculate the worldwide prevalence of personality disorders and examine whether rates vary between high-income countries and low- and middle-income countries (LMICs). METHOD: We systematically searched PsycINFO, MEDLINE, EMBASE and PubMed from January 1980 to May 2018 to identify articles reporting personality disorder prevalence rates in community populations (PROSPERO registration number: CRD42017065094). RESULTS: A total of 46 studies (from 21 different countries spanning 6 continents) satisfied inclusion criteria. The worldwide pooled prevalence of any personality disorder was 7.8% (95% CI 6.1-9.5). Rates were greater in high-income countries (9.6%, 95% CI 7.9-11.3%) compared with LMICs (4.3%, 95% CI 2.6-6.1%). In univariate meta-regressions, significant heterogeneity was partly attributable to study design (two-stage v. one-stage assessment), county income (high-income countries v. LMICs) and interview administration (clinician v. trained graduate). In multiple meta-regression analysis, study design remained a significant predictor of heterogeneity. Global rates of cluster A, B and C personality disorders were 3.8% (95% CI 3.2, 4.4%), 2.8% (1.6, 3.7%) and 5.0% (4.2, 5.9%). CONCLUSIONS: Personality disorders are prevalent globally. Nevertheless, pooled prevalence rates should be interpreted with caution due to high levels of heterogeneity. More large-scale studies with standardised methodologies are now needed to increase our understanding of population needs and regional variations.

The Forensic Restrictiveness Questionnaire: Development, Validation, and Revision.

Introduction: Forensic psychiatric care is often practiced in closed institutions. These highly regulated, secure, and prescriptive environments arguably reduce patient autonomy, self-expression, and personhood. Taken together these settings are restrictive as patients' active participation in clinical, organizational, community, and personal life-worlds are curtailed. The consequences of patients' experiences of restrictiveness have not been explored empirically. This study aimed to develop a psychometrically-valid measure of experiences of restrictiveness. This paper presents the development, validation, and revision of the Forensic Restrictiveness Questionnaire (FRQ). Methods: In total, 235 patients recruited from low, medium, and high secure hospitals across England completed the FRQ. The dimensionality of the 56-item FRQ was tested using Principle Axis Factor Analysis and parallel analysis. Internal consistency was explored with Cronbach's α. Ward climate (EssenCES) and quality of life (FQL-SV) questionnaires were completed by participants as indicators of convergent validity. Exploratory Factor Analysis (EFA) and Cronbach's α guided the removal of items that did not scale adequately. Results: The analysis indicated good psychometric properties. EFA revealed a unidimensional structure, suggesting a single latent factor. Convergent validity was confirmed as the FRQ was significantly negatively correlated with quality of life (Spearman's ρ = -0.72) and ward climate (Spearman's ρ = -0.61). Internal consistency was strong (α = 0.93). Forty-one items were removed from the pilot FRQ. The data indicate that a final 15-item FRQ is a valid and internally reliable measure. Conclusion: The FRQ offers a novel and helpful method for clinicians and researchers to measure and explore forensic patients' experiences of restrictiveness within secure hospitals.

External factors influencing length of stay in forensic services - a European evaluation. / Czynniki zewnetrzne wplywajace na dlugosc pobytu w osrodkach psychiatrii sadowej ­ badanie europejskie.

OBJECTIVES: A growing number of patients whose length-of-stay in forensic services is aboveaverage length are identifiable in several European countries. Forensic services are situated within a particular sociocultural setting. Accordingly, this trend to increased admission length cannot be solely attributed to patient characteristics. This is the first known study exploring the influence of external factors on length-of-stay in forensic services. METHODS: Representatives from 16 European countries, members of the international COST project, focused on forensic psychiatric service, analyzed their respective forensic services using a structured tool. Responses were combined and analyzed using thematic analysis. RESULTS: Four themes described the factors influencing length-of-stay: care and treatment pathways; resources; legal and systemic impact; and sharing expertise. CONCLUSIONS: Findings suggest multidisciplinary consideration of the whole care pathway is required to address increased length-of-stay. Further research is required to support development of evidence-based standards applicable across Europe, and improve outcomes for patients at risk of increased length-of-stay in forensic services.

People with severe problematic personality traits and offending histories: What influences occupational participation?

BACKGROUND: Occupational participation is important for personality disordered offenders (PDOs) because it is integral to health and desistance from offending. What influences occupational participation is unknown for PDOs in the community, limiting effective intervention to affect change. In England and Wales, the Offender Personality Disorder Pathway aims to improve outcomes for people considered highly likely to have a severe personality disorder and who present a high risk of reoffending, who are determined to be PDOs on the basis of a structured assessment. This study identified the influencers of occupational participation for the population who receive this service. METHOD: In this critical realist, qualitative study, narrative interviews were conducted with 18 PDOs supervised by probation in England. Transcripts were analyzed using a grounded theory approach to establish influencers of occupational participation. RESULTS: Four themes describe influencers of occupational participation: function of occupations; influence of the past; external forces; and learning and adaptation. The latter theme reflected understandings of occupational adaptation described by the Model of Human Occupation. CONCLUSIONS: An intervention to increase prosocial occupational participation should be developed and evaluated for PDOs in the community, taking account of occupational participation over the life course.

What influences social outcomes among offenders with personality disorder: A systematic review.

BACKGROUND: Personality disorder is highly prevalent in offender populations and is associated with poor health, criminal justice, and social outcomes. Research has been conducted into factors that influence offending and health, but, in order to improve (re)habilitation, service providers must also be able to identify the variables associated with social outcomes and the mechanisms by which they operate. AIM: To establish what is known about what influences social outcomes among offenders with personality disorder. METHOD: A systematic review was completed using Cochrane methods, expanded to include nonrandomised trials. Anticipated high heterogeneity informed a narrative synthesis. RESULTS: Three studies met inclusion criteria. Two were qualitative studies including only 13 cases between them. All studies were low quality. CONCLUSIONS: There is insufficient evidence to determine what influences good social outcomes among offenders with personality disorder. Research is required to identify associated variables, to inform the development of effective interventions.

Characteristics and Pathways of Long-Stay Patients in High and Medium Secure Settings in England; A Secondary Publication From a Large Mixed-Methods Study.

Background: Many patients experience extended stays within forensic care, but the characteristics of long-stay patients are poorly understood. Aims: To describe the characteristics of long-stay patients in high and medium secure settings in England. Method: Detailed file reviews provided clinical, offending and risk data for a large representative sample of 401 forensic patients from 2 of the 3 high secure settings and from 23 of the 57 medium secure settings in England on 1 April 2013. The threshold for long-stay status was defined as 5 years in medium secure care or 10 years in high secure care, or 15 years in a combination of high and medium secure settings. Results: 22% of patients in high security and 18% in medium security met the definition for "long-stay," with 20% staying longer than 20 years. Of the long-stay sample, 58% were violent offenders (22% both sexual and violent), 27% had been convicted for violent or sexual offences whilst in an institutional setting, and 26% had committed a serious assault on staff in the last 5 years. The most prevalent diagnosis was schizophrenia (60%) followed by personality disorder (47%, predominantly antisocial and borderline types); 16% were categorised as having an intellectual disability. Overall, 7% of the long-stay sample had never been convicted of any offence, and 16.5% had no index offence prompting admission. Although some significant differences were found between the high and medium secure samples, there were more similarities than contrasts between these two levels of security. The treatment pathways of these long-stay patients involved multiple moves between settings. An unsuccessful referral to a setting of lower security was recorded over the last 5 years for 33% of the sample. Conclusions: Long-stay patients accounted for one fifth of the forensic inpatient population in England in this representative sample. A significant proportion of this group remain unsettled. High levels of personality pathology and the risk of assaults on staff and others within the care setting are likely to impact on treatment and management. Further research into the treatment pathways of longer stay patients is warranted to understand the complex trajectories of this group.

Long-stay in forensic-psychiatric care in the UK.

PURPOSE: Forensic services provide care for mentally disordered offenders. In England this is provided at three levels of security-low, medium and high. Significant number of patients within these settings remain detained for protracted periods of time. This is both very costly and restrictive for individuals. No national studies have been conducted on this subject in England. METHODS: We employed a cross-sectional design using anonymised data from medical records departments in English secure forensic units. Data were collected from a large sample of medium secure patients (n = 1572) as well as the total high secure patient population (n = 715) resident on the census date (01-04-2013). We defined long-stay as a stay of more than 10 years in high, 5 years in medium or 15 years in a mix of high and medium secure settings. Long-stay status was assessed against patient demographic and admission information. RESULTS: We identified a significant proportion of long-stayers: 23.5% in high secure and 18.1% in medium secure care. Amongst medium secure units a large variation in long-stay prevalence was observed from 0 to 50%. Results indicated that MHA section, admission source and current ward type were independent factors associated with long-stay status. CONCLUSION: This study identified a significant proportion of long-stayers in forensic settings in England. Sociodemographic factors identified in studies in individual settings may be less important than previously thought. The large variation in prevalence of long-stayers observed in the medium secure sample warrants further investigation.