Schizophrenia Research Foundation Research Articles

Forty Years of Care and Research – The Intertwining

Translation of research findings to actual clinical practice, now called translational research, is critical in low-resource settings and countries. In India, we have very few centers offering research training and even fewer agencies funding mental health research. It was in this context that the Schizophrenia Research Foundation (SCARF) based in Chennai used many of the research findings and processes to improve clinic and community-based care of persons with mental disorders. Based on 40 years of our experience of working in the community, this article provides an overview of our major research projects and the ways in which the findings that emanated were used in the promotion of better care.

Cognitive self-efficacy in schizophrenia: Questionnaire construction and its relation with social functioning

Social functioning or social adjustment is a general term used to refer to the ability of individuals to meet socially defined roles such as homemaker, worker, student, spouse, family member, or friend. In schizophrenia, the patient's social functioning is impaired. Social functioning tends to worsen due to impairment in cognitive functions, and it is a primary target for various rehabilitation programs for schizophrenia. In cognitive remediation therapies, much attention is paid to cognitive skill development rather than cognitive self-efficacy, possibly due to a dearth of systematic studies in this area. The objective of the current study was to explore cognitive self-efficacy in association with verbal working memory and demographic variables as predictors of social functioning. The research was classified into two studies: Phase-I dealt with construction of a questionnaire measuring cognitive self-efficacy (CSE). Psychometric properties of the questionnaire were tested on 100 patients with schizophrenia. In phase II, 150 patients diagnosed with schizophrenia according to ICD-10 were taken from the department of psychiatry of different postgraduate hospitals in Kolkata. CSE questionnaire, positive and negative symptoms scale for schizophrenia (PANSS), Schizophrenia Research Foundation (SCARF) India-Social Functioning Index (SCARF-SFI), and backward digit span test were administered. Linear regression analysis showed that CSE was a strong predictor in predicting social functioning. Cognitive Self-efficacy questionnaire was developed and validated.

Symposium

Patients with first episode psychoses (FEP) have better chances of recovery compared to schizophrenia. Early stages of psychoses are critical in predicting its course and intervention early in the course of illness is important. Outcome of FEP can be improved by intervening early in the course of the illness. The implementation of early treatment for first episode and untreated psychosis is key to reducing the burden of disability due to psychotic disorders. However, the complexity of the Indian healthcare system and differences in cultural context means that simple ‘transplantation’ of western interventions is virtually impossible. Early intervention services focus specifically on reducing the duration of untreated psychosis (DUP), enhancing therapeutic engagement, and improving clinical and social outcomes by providing care in community-based, low-stigma settings. UK and Canada have led the development of early interventions in psychosis nationally and internationally. Combining the expertise from the UK, Canada and India, the Warwick-India-Canada (WIC) Project aimed to improve the health, wellbeing and functioning, and reduce the burden for those with psychotic disorders in India. The focus was tailoring evidence-informed interventions to the Indian socio-cultural context to: 1) transform the outcomes of psychotic disorders; 2) provide high quality research evidence for clinicians and policy makers; and 3) build research capacity, including new methodologies such as economic evaluation and implementation science. As part of the WIC project, two clinical sites – All India Institute of Medical Sciences (AIIMS), New Delhi and Schizophrenia Research Foundation (SCARF), Chennai used common assessment and outcome measures and standard management protocol for patients with FEP. By using validated and reliable assessment and outcomes measures, we planned cross-country and cross- setting comparisons and provide information to develop culturally appropriate, accessible, and acceptable interventions, which can be robustly tested for clinical and economic effectiveness, to improve psychosis outcomes in India and other LMIC. In this symposium, we share assessment and management protocol used for the FEP, their results and implications in two centres in IndiaBackground of the WIC study: SPSStudy Protocol for First Episode Psychosis: RTComparison of two centers: MS Implications of the study: RKC

Symposium

Patients with first episode psychoses (FEP) have better chances of recovery if detected early and treated rigorously. The implementation of early treatment for first episode and untreated psychosis is key to reducing the burden of disability due to psychotic disorders. However, the complexity of the Indian healthcare system and differences in cultural context means that simple ‘transplantation’ of western interventions is virtually impossible. Early intervention services focus specifically on reducing the duration of untreated psychosis (DUP), enhancing therapeutic engagement, and improving clinical and social outcomes by providing care in community-based, low-stigma settings. UK and Canada have led the development of early interventions in psychosis nationally and internationally.Combining the expertise from the UK, Canada and India, the Warwick-India-Canada (WIC) Project aimed to improve the health, wellbeing, and functioning, and reduce the burden for those with psychotic disorders in India. The focus was tailoring evidence-informed interventions to the Indian socio-cultural context to 1) transform the outcomes of psychotic disorders; 2) provide high quality research evidence for clinicians and policy makers; and 3) build research capacity, including new methodologies such as economic evaluation and implementation science. As part of the WIC project, two clinical sites – All India Institute of Medical Sciences (AIIMS), New Delhi and Schizophrenia Research Foundation (SCARF), Chennai used common assessment and outcome measures and standard management protocol for patients with FEP. The study found substantial improvement on various outcome measures including functioning and family burden. The results offer scope of further application of the management protocol on a larger scale in low- and middle-income countries.In this symposium, the presenters will discuss the background of the study, protocols of assessment and interventions, compare findings at two centres and implications of the findings.Background of the WIC study: Swaran Preet Singh, university of Warwick, UK Study Protocol for First Episode Psychosis: R Thara, SCARF India, Chennai Comparison of two centres: Mamta Sood, AIIMS, New DelhiComorbidity and Physical Activity Intervention: R Padmavati, SCARF India, ChennaiImplications of the study: Rakesh K Chadda, AIIMS, New Delhi

Dr. Thara Rangaswamy

Dr. Thara is a one of the pioneer women psychiatrists in India. Along with Sarada Menon and S Rajakumar, she cofounded an nongovernmental organization, called Schizophrenia Research Foundation (SCARF), based in Chennai, India. She is currently the Vice Chairman of SCARF, which was previously held by Dr. Sarada Menon. She is a researcher in schizophrenia and community mental health. She is the editor of the book-Emergencies in Psychiatry in low- and middle-income countries. Her Madras Longitudinal Study which has followed up persons with first episode schizophrenia for 35 years and is one of its kinds in the world. She pioneered the use of mobile telepsychiatry to deliver high quality care for schizophrenia in resource-less rural communities. In 2022, she received the Nari Shakti Puraskar, the highest civilian award for women, for creating awareness for mental disorders.

ASSESSMENT OF THE CORRELATION BETWEEN FAMILY BURDEN IN PRIMARY CAREGIVERS AND DISABILITY IN PATIENTS WITH SCHIZOPHRENIA

Background: Schizophrenia is one of the most devastating, and a chronic, relapsing mental illness associated with increased morbidity, poor quality of life and low recovery rates. In India, families are the major providers of long-term care and they represent an important supportive, social network for patients with schizophrenia. Indian families experience significant degrees of burden in the care of their relatives with schizophrenia. Illness severity and patients' disability have a direct positive relationship with perceived family burden.
 Methods: This study is a cross-sectional study, done to assess the correlation between family burden in primary caregivers and disability in patients with schizophrenia. 60 patients with schizophrenia and their primary caregivers were recruited from the outpatient and inpatient units of Department of Psychiatry, Government Rajaji Hospital, Madurai. IDEAS (Indian Disability Evaluation Assessment Scale) scale was used to assess the disability of patients with schizophrenia and BAS (Burden Assessment Schedule) of SCARF (Schizophrenia Research Foundation) was used to assess the family burden in their primary caregivers.
 Results: Among the 60 primary caregivers, (48.3%) were having caregiver burden between 50 and 70%. (56.4%) of female caregivers had burden range 50- 70%. (56.5%) of caregivers delivering care for patients with illness between 15 and 20 years experienced burden >70%. Statistical analysis revealed that the correlation between caregiver burden and disability was statistically significant.
 Conclusions: The severity of caregiver burden increases with increasing grades of disability and indicates that caregiver burden affects the overall outcome of schizophrenia
 Keywords: Schizophrenia, Caregiver burden, Disability, Outcome

ASSESSMENT OF CAREGIVER BURDEN OF MENTALLY ILL PATIENTS: A CROSS SECTIONAL STUDY

One of the main aspects of community care of mentally ill patient is family support. Caregiver Burden is the Physical, Emotional & Financial toll of providing care. A caregiver may go into depression, anxiety, physical burnout or emotional burnout due to stress of giving care to the patient. By assessing the burden and nding out the factors related to high burden we can nd out the coping strategies. This cross-sectional study was planned to assess Caregiver burden of mentally ill patients and also to nd out the factors associated with high caregiver burden among the study subjects. This study was conducted in tertiary mental health care centres of Thiruvananthapuram among 80 primary care givers using Burden Assessment Schedule (BAS) developed by Schizophrenia Research Foundation (SCARF), Chennai and data was analysed to get Proportions and Chi Square. We found that majority of caregivers had high burden and caregiver's relationship with patient is signicantly associated with high burden.

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

IntroductionThe 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...

Robotic Telemedicine for Mental Health: A Multimodal Approach to Improve Human-Robot Engagement.

COVID-19 has severely impacted mental health in vulnerable demographics, in particular older adults, who face unprecedented isolation. Consequences, while globally severe, are acutely pronounced in low- and middle-income countries (LMICs) confronting pronounced gaps in resources and clinician accessibility. Social robots are well-recognized for their potential to support mental health, yet user compliance (i.e., trust) demands seamless affective human-robot interactions; natural ‘human-like’ conversations are required in simple, inexpensive, deployable platforms. We present the design, development, and pilot testing of a multimodal robotic framework fusing verbal (contextual speech) and nonverbal (facial expressions) social cues, aimed to improve engagement in human-robot interaction and ultimately facilitate mental health telemedicine during and beyond the COVID-19 pandemic. We report the design optimization of a hybrid face robot, which combines digital facial expressions based on mathematical affect space mapping with static 3D facial features. We further introduce a contextual virtual assistant with integrated cloud-based AI coupled to the robot’s facial representation of emotions, such that the robot adapts its emotional response to users’ speech in real-time. Experiments with healthy participants demonstrate emotion recognition exceeding 90% for happy, tired, sad, angry, surprised and stern/disgusted robotic emotions. When separated, stern and disgusted are occasionally transposed (70%+ accuracy overall) but are easily distinguishable from other emotions. A qualitative user experience analysis indicates overall enthusiastic and engaging reception to human-robot multimodal interaction with the new framework. The robot has been modified to enable clinical telemedicine for cognitive engagement with older adults and people with dementia (PwD) in LMICs. The mechanically simple and low-cost social robot has been deployed in pilot tests to support older individuals and PwD at the Schizophrenia Research Foundation (SCARF) in Chennai, India. A procedure for deployment addressing challenges in cultural acceptance, end-user acclimatization and resource allocation is further introduced. Results indicate strong promise to stimulate human-robot psychosocial interaction through the hybrid-face robotic system. Future work is targeting deployment for telemedicine to mitigate the mental health impact of COVID-19 on older adults and PwD in both LMICs and higher income regions.

Creating comprehensive youth mental health services in low-resource settings: Schizophrenia research foundation experience

Creating comprehensive youth mental health services in low-resource settings: Schizophrenia research foundation experience

Research on bipolar disorder from India: A bibliometric analysis of papers published during 2000-19.

The paper examines 1037 publications on bipolar disorder (BD) during the years 2000-19 from India, as listed in the Scopus database. India's publications constituted 2.27 % share of global output (45,624 publications) in the study period of 20 years. India does not figure in the top 10 countries in terms of research output on BD. The number of publications on BD from India increased from 13 in 2000 to 107 in 2019, registering 14.44 % annual average growth, higher than world's growth of 6.02 %. India's 10-year cumulative publications increased from 264 during 2000-09 to 773 during 2010-19, registering 192.8 % absolute growth, much higher than world cumulative growth of 63.27 %. India's publications on BD averaged citation impact per paper of 14.24, which decreased from 25.38 to 10.43 from 2000-09 to 2010-19. Maximum numbers of papers from India on BD were published by researchers from National Institute of Mental Health and Neurosciences, Bangalore (222 papers),Post Graduate Institute of Medical Education and Research, Chandigarh(118 papers), and AII India Institute of Medical Sciences, New Delhi (79 papers). Lady Harding Medical College, New Delhi (36.20 and 2.54), Schizophrenia Research Foundation, Chennai (27.45 and 1.93), and King George's Medical University, Lucknow (25.21 and 1.77) were the most significant organizations in terms of citation per paper and relative citation index. Maximum number of papers were published in Indian Journal of Psychiatry (101 papers), followed by Asian Journal of Psychiatry (88 papers) and Indian Journal of Psychology Medicine (34 papers).

Schizophrenia research in India: A scientometric assessmentof India's publications during 1990-2019.

The present study examined India's publications (2803) on schizophrenia, using various bibliometric indicators during 1990-2019. The study focuses on the number of publications, and citations received by the papers on schizophrenia, published by authors affiliated to Indian institutes by using Scopus data base. Additionally, an attempt was made to evaluate the performance of India's leading organizations and authors, and inter-collaborative linkages between them. Scopus database include publications of Indian Journal of Psychiatry and Indian Journal of Psychological Medicine from 2009 and 2011. Accordingly, the publications in these journals were included after these years. Analysis of the publications showed that India is globally ranked at 13th position in number of publications on schizophrenia with 2.04 % global share, depicting 14.21 % annual growth, with 22.8 % of publications having international collaboration. Publications from India published during the period of 1990-2019, registered a citation impact per paper (CPP) of 13.3. National Institute of Mental Health and Neurosciences, Bangalore (671 papers), Post Graduate Institute of Medical Education and Research, Chandigarh (271 papers) and Central Instittue of Psychiatry, Ranchi (136 papers) were the most productive institutes. However, the most impactful organizations in terms of citation per paper (CPP) and relative citation index (RCI), Indian Institute of Science, Bangalore (77.27 CPP and 5.78 RCI), Schizophrenia Research Foundation, Chennai (31.16 CPP and 2.55 RCI) and Banaras Hindu University, Varanasi (29.21 CPP and 2.18 RCI) were at the top. In terms of Individual authors, G. Venkatasubramanian (180 papers), and B.N. Gangadhar (162 papers) were the most productive authors and R.Thara (31.87 CPP and 2.38 RCI), B.K. Thelma (24.0 CPP and 1.8 RCI), M.S. Keshavan (23.91 CPP and 1.79 RCI) were the most impactful authors, among the top 15 authors. The journals which reported comparatively higher productivity for Indian publications included Indian Journal of Psychiatry (242 papers), followed by Asian Journal of Psychiatry (214 papers) and Indian Journal of Psychological Medicine (103 papers). In terms of most impactful Indian publications, these were published in The Lancet (97.7), Progress in Neuro Psychopharmacology & Biological Psychiatry (50) and Schizophrenia Bulletin (44.67).

Learnings from conducting mental health research during 2004 tsunami in Tamil Nadu, India

BackgroundThe Indian Ocean tsunami experience in 2004 caused a major loss of life and subsequent emotional trauma for survivors. Psychosocial needs in the aftermath of this disaster were extensive, yet the cohesion and effectiveness of response were limited due to lack of preparedness and relevant policy. The Schizophrenia Research Foundation (SCARF) was one of the organizations that quickly responded to provide psychosocial assistance to people in the tsunami affected areas and recognized a need for relevant research on disaster response. Therefore, we undertook research on the challenges, success and limitations of psychosocial interventions in alleviating post-traumatic symptomology.DiscussionBoth community-level workers and researchers were limited in their preparedness to carry out tasks related to response. Language barriers, cultural differences, and a gap in long-term services limited the breadth and scope of research that was able to be completed. Lack of policy, poor co-ordination of services, lack of trained researchers and limited resources were challenges that emerged during this period and various strategies were adopted to meet these challenges.ConclusionsContinued research and evaluation of data has brought crucial considerations to light, including the variance in symptomology, effective tools of measurement, and the nuanced response of survivors. Future research should take relevant factors into consideration including barriers to care. Understanding of the local language and religious beliefs are significant resources in understanding the nature of survivors’ trauma response and effective means of coping. Lastly, limitations regarding time frame and scope of research should be evaluated to provide more effective, comprehensive methods in future studies.

Support groups for family caregivers of persons with dementia in India.

A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. The study found that support groups fulfil an important need for caregivers by providing information and peer support.

Evolution of Community Telepsychiatry in India Showcasing the SCARF Model.

This review chronicles the origin of telepsychiatry services started by the Schizophrenia Research Foundation (SCARF) in the community and traces the birth of the Scarf Telepsychiatry in Pudukkottai (STEP) program at Pudukkottai in Tamil Nadu. This paper also examines the trajectory of STEP and highlights other relevant models existing in the country in the last decade.

Subjective cognitive complaints and its relation to objective cognitive performance, clinical profile, clinical insight, and social functioning in patients of schizophrenia: A cross-sectional study.

Context:Neurocognitive deficits are well documented in schizophrenia. Neurocognitive insight (NI), described as awareness of neurocognitive deficits, has not been evaluated in the Indian context. Its relation to clinical profile and social functioning also remains unexplored.Aims:The aim of this study was to evaluate the subjective cognitive complaints (SCCs) and their relation to objective cognitive performance, clinical profile, clinical insight, and social functioning in patients of schizophrenia.Settings and Design:This was a cross-sectional study at the outpatient department of a tertiary care teaching hospital.Materials and Methods:One hundred individuals with schizophrenia were evaluated using Positive and Negative Syndrome Scale, Subjective Scale To Investigate Cognition in Schizophrenia, abbreviated version of Scale to Assess Unawareness in Mental Disorders, and Schizophrenia Research Foundation–Social Functioning Index. Cognitive performance was assessed using (1) Digit Span Test (attention) from Wechsler Adult Intelligence Scale, 3rd edition and (2) Passages Test (explicit memory), (3) Verbal n-back Test (working memory), and (4) Stroop Test (executive functioning) from the National Institute of Mental Health and Neuro Sciences Battery.Statistical Analysis:Statistical analysis was done using descriptive statistics, nonparametric tests, and Pearson's coefficient of correlation.Results:Participants showed impairment in all cognitive domains. Except for working memory, there was no correlation between SCC and objective performance for other cognitive domains correspondingly, implying poor NI. Severity of psychosis and clinical insight did not have any correlation with SCC. Higher SCC correlated with poorer social functioning, especially in “occupational” and “other social roles” domains.Conclusions:Individuals with schizophrenia have poor NI. This is independent of severity of psychosis or clinical insight into illness. Socio-occupational functioning and depression should be actively enquired into when patients present with SCC.

Psychometric properties of Tamil version of Body Weight Image and Self Esteem questionnaire (BWISE) in severe mental illness in a South Indian population.

Body weight image self-esteem questionnaire (BWISE) has been recently developed to assess psychosocial adjustment related to antipsychotic induced weight gain in Schizophrenia and related disorders. Patients have reported disturbance in body image and poor self esteem due to weight gain leading to treatment non-adherence. Assessment of psychometric properties of Tamil version of Body weight image self-esteem questionnaire (BWISE) in our population. In a cross sectional, validation study conducted at Schizophrenia Research Foundation (SCARF), 203 consenting outpatients with DSM IV diagnosis of Schizophrenia and related psychotic disorder fulfilling inclusion/exclusion criteria were administered BWISE. The mean age of the sample was 38.21 ± 10.32 years. BWISE ratings showed that patients (54%) reported weight gain with current medications and were aware of increase in weight. Only three percent reported to have severe psychosocial adjustment to the weight gain while remaining reported moderate (55%) and mild (42%) psychosocial adjustment. Validation of Tamil version of BWISE was found to be of moderate range (internal consistency 0.55-0.72). Principal Component analysis of BWISE identified 3 components with a 50.36% variance. BWISE could be used as a useful screening instrument to assess the psychosocial consequences of weight gain in patients.

Global MH: Clinical and Research Implications in India, Africa, and the Diaspora

Global MH: Clinical and Research Implications in India, Africa, and the Diaspora

Burden Among Caregivers of Children Living with Human Immunodeficiency Virus in North India.

Background:Due to wider access to and free antiretroviral therapy (ART) program, the number of children dying due to acquired immune deficiency syndrome (AIDS)-related causes has declined and the nature and duration of human immunodeficiency virus (HIV)/AIDS caregiving has also dramatically altered. The care of children living with HIV/AIDS (CLHA) places a significant additional burden on the caregivers.Aims:This study was conducted to assess the perceived burden among caregivers of children living with HIV in North India.Materials and Methods:A hospital-based cross-sectional study among 156 CLHA-caregiver dyads in North India was conducted from June 2010 to May 2011. Data were collected by using a pretested structured interview schedule. The caregiver burden was measured with a 36-item scale adapted from Burden Assessment Schedule of Schizophrenia Research Foundation (BASS). Child characteristics, caregiver characteristics, caregiving burden, the knowledge of caregivers, and issues related to health care, nutrition, education, and psychological aspects were studied.Results:Caregivers had a mean age of 35.9 ± 10.2 years. Women accounted for over three-fourth (76.9%) of the caregivers. Nearly two-third of them (65.4%) reported as living with HIV. The mean caregiver burden score was 68.7 ± 2.9. A majority of the caregivers reported either low or moderate burden. Standardized percentage score was high in the domains of physical and mental health, external support, patients’ behavior, and caregivers’ strategy and seemed to be comparatively less in the other domains such as support of the patient and taking responsibility.Conclusions:Caring of children is a universal practice but there is a need of special care for children living with HIV. The majority of caregivers who were usually the mothers perceived the burden and need to be assisted in caring for the child. Stigma and discrimination with HIV infection further increased the burden as caregivers did not disclose the HIV status to any near and dear one.

Symptoms at Onset in First Episode Schizophrenia: Caregivers Perspectives.

Background:Early recognition of symptoms is important in the management of psychosis. Caregivers understanding and attribution of symptoms plays a major role in treatment selection.Aim:The aim was to identify the various symptoms cluster recognized by caregivers at illness onset in first episode schizophrenia.Subjects and Methods:In a cross-sectional study 40 key caregivers of patients with first episode of Schizophrenia (International Classification of Diseases-10) attending the outpatient services of Schizophrenia Research Foundation were recruited. Caregivers were assessed using a questionnaire adapted from the Psychiatric and Personal History Schedule.Statistical Analysis:Principal component (PCP) analysis.Results:Caregivers were predominantly women. Parents (58%), siblings (18%), spouse (12%), and children (12%) formed the sample. The caregiver easily recognized depressive symptoms. An analysis was done to analyze symptom data rated on the caregiver questionnaire indicated a four-factor solution. PCP analysis produced a clear depressive, anxious, irritable, and vegetative factor (Eigenvalue >0.05). Caregivers (40%) attributed present lifestyle as causality. The first contact of help in almost half of the sample (45%) was to a psychiatric facility.Conclusion:Caregiver's perception about mental illness and ability to identify the four factors has important treatment implications. Studying patterns of help seeking may be a useful strategy in early intervention programs.