A Manual for Working with People with Schizophrenia and their Families Community Care for People with Schizophrenia in India COPSI Manual 2012 1 The COPSI Manual: Manual for Working with People with Schizophrenia and their Families ISBN No.: Applied For First Edition: September 2012 Illustrations: Conrad Pinto Covers & Book Design: Lester Fernandes Printed by: Rama Harmalkar Contact: Sangath Address: 841/1, Behind Electricity Dept., Alto Porvorim, Bardez, Goa - India 403 521. E-mail: [email protected] Phone no.: (91-832) 2414916; (91-832) 2417914 www.sangath.net Any part/s of this manual can be copied, reproduced or adapted by individual persons as part of their own work or training without permission from the authors or publishers, provided due acknowledgment is provided and the parts reproduced are not used for profit. 2 COPSI Manual 2012 Introduction chizophrenia is a relatively uncommon but severe mental illness which can have negative consequences for Sthe affected person, the family caring for the person and the larger community. The illness tends to affect young people and can sometimes continue for a long period of time. This often leads to many difficulties in the personal, social and economic roles of the individual and the family. Adding to these problems is the issue of negative attitudes and discrimination which people with schizophrenia and their families face in their everyday lives, affecting their chances of leading a full and dignified life. A combination of these factors makes schizophrenia a challenging illness to deal with for everyone involved. On the positive side, we now know that there are effective medical and non-medical treatments for schizophrenia which can improve the quality of the person’s and family’s lives. We also know that a combination of these treatments provided in a timely and convenient manner (like at home) works quite well. In countries like India, one of the biggest problems in providing these treatments is the lack of trained professionals who can actually deliver these treatments. This means that the majority of people with schizophrenia do not get these treatments, thus affecting their lives greatly. The challenge is therefore to deliver the effective treatments - we know work well - to a larger proportion of persons with schizophrenia in the near future. One of the ways of doing this is by combining medical treatments (provided by Psychiatrists) with a range of simple and essential non medical treatments delivered by persons who do not need to have previous experience in mental health treatments, working as a team. Such a lay person can, with training, become a Community Health Workers (CHW). To be an effective CHW, you will need to acquire the set of essential theoretical and practical skills which the manual describes. The manual is organized as a series of modules that will provide these skills in a graded manner, combined with training exercises involving the group. The manual begins with a moving First Person Account of the impact of schizophrenia and the ways that close family and friends can help in the recovery process. Module 1 introduces the essential concepts of schizophrenia starting with a description of normal brain functioning which is affected by the illness as well as the symptoms, disabilities and impact of the illness on the person and family. Module 2 provides a broad overview of the essential treatments and counseling skills that are necessary for best results including medical treatments, individual and family treatments that you will be providing, understanding the issue of stigma and discrimination in detail and the necessity for networking with other social agencies. Module 3 describes all the individual treatments you will be generally expected to provide in more detail: needs assessment, treatment planning, providing information about the illness, medicines, prevention of relapses, ways to improve overall health and well being, helping people continue with their treatments, manage discrimination, as well as details of the rehabilitation and social initiatives to improve the overall quality of life of the persons with schizophrenia and their family members. Module 4 has an Appendix which shows the forms and tools used in the Community Care for People with Schizophrenia in India (COPSI) study. Obviously, not all of these need to be used in other settings; nonetheless, having these might be useful in thinking about documentation for other similar programs. This manual has been written for CHW’s who do not have any previous exposure to providing care for persons with schizophrenia or other mental illnesses. Accordingly, we have attempted to use non-technical language as much as possible to make it interesting and user friendly. This manual has been developed by revising the earlier, draft version used during the study to include some of the real life experiences of the people involved to provide you with a better understanding of the problems faced by people with schizophrenia in their daily lives. We would also welcome any suggestions to make the manual better and more user- friendly. It is my pleasure to thank the contributors to this manual — Professor Graham Thornicroft, Dr. Mirja Koschorke, Dr. R. Thara, Dr. R. Padmavathy, Professor Mathew Varghese, Dr. Neerja Chowdhary, Professor YCR Janardhan Reddy, Mr Sujit John, Mrs Achira Chatterjee, Ms Madhumita Balaji, Mr K.K.Pratheesh, Mrs. Dakshin Lilly, Ms Smita Naik, Ms Jesina Pereira, Dr. Ana Eduardo, Dr. Monica Campos and Ms Beth Brennan for their specific contributions. COPSI Manual 2012 3 I am also extremely grateful to Ms Baljeet Ahluwalia for the inspiring first person account as well as to Mr. V.K Sathyendran for kindly agreeing to share his striking paintings for the manual. Finally, I am grateful to Sampada Prabhudessai for diligently keeping track of the many bits and pieces of the manual and putting it together. I also wish to acknowledge the support of the Wellcome Trust, the UK medical charity which has funded the COPSI project. In addition, I would like to acknowledge the various institutions in India involved in the study for their fantastic support in developing the manual- the Schizophrenia Research Foundation (SCARF) at Chennai, Sangath at Goa, Parivartan and Nirmittee at Satara and the National Institute of mental Health and Neurosciences (NIMHANS) at Bangalore. I am also grateful to the Institute of Psychiatry (IoP) at the Kings’ College, London and the London School of Hygiene and Tropical Medicine for their support during the process of developing the manual. I am also grateful to all our collaborating psychiatrists -- T. C. Ramesh Kumar, R. Padmavati, R. Hegde, P. Pai Kakode, M. Chagas Silva, P. Castelino, H. Dabholkar, P. Dabholkar, A. Chavan and R. Deshpande who guided and supported the delivery of COPSI intervention across the sites. Finally, I am very thankful to the fantastic team of lay community health workers across the study sites. Their experiences in delivering the intervention have been invaluable in revising the manual which is deeply appreciated. I do hope this manual will be a valued resource for Community Health Workers during their training and in the course of work in programs providing community based services for people with schizophrenia in other programs and settings. Dr. Sudipto Chatterjee, MD Consultant Psychiatrist and Trial Coordinator, COPSI 4 COPSI Manual 2012 Table of Contents I. FIRST PERSON ACCOUNT : Baljeet Aljeet Ahluwalia 6 II. MODULE 1 : INTRODUCTION TO SCHIZOPHRENIA 13 1.1 The human brain and behavior 14 1.2 What is schizophrenia? 23 1.3 Why do some people develop schizophrenia? 31 1.4 Symptoms of schizophrenia 34 1.5 The course and outcome of schizophrenia 38 1.6 The disabilities caused by schizophrenia 41 1.7 The impact of schizophrenia on the family 45 III. MODULE 2 : PRINCIPLES AND METHODS OF PROVIDING CARE FOR PEOPLE WITH SCHIZOPHRENIA 51 2.1 Overview of the individual treatments in schizophrenia 52 2.2 Medical treatment in schizophrenia 56 2.3 General principles of counseling and effective problem solving methods relevant to COPSI 62 2.4 Family treatments for schizophrenia 70 2.5 Overview of the nature and consequences of stigma and discrimination in relation to schizophrenia 74 2.6 Overview of the need for and benefits of community linkages for people with schizophrenia and their families 80 III. MODULE 3 : THE SPECIFIC TREATMENTS FOR PEOPLE WITH SCHIZOPHRENIA AND THEIR FAMILIES 85 3.1 Therapeutic alliance- the foundation for working with the person with schizophrenia and the family 86 3.2 Developing and updating treatment plans for the individual with schizophrenia and the family. 89 3.3 The assessment and management of suicide risk in the COPSI intervention 96 3.4 Individual treatments for people with schizophrenia in COPSI 105 3.4 A Information about the illness for individual with schizophrenia and family members 105 3.4 B Providing information about medicines 110 3.4 C Relapse prevention 111 3.4 D Dealing with distressing symptoms 116 3.5 Delivering the family treatment in the COPSI intervention. 120 3.6 Adherence management in COPSI 141 3.7 Health Promotion in people with schizophrenia 152 3.7 A Improving physycal health in people with schizophrenia 152 3.7 B Dietary recommendations for people with schizophrenia 160 3.7 C Stress management in schizophrenia 164 3.8: Rehabilitation to improve the quality of life of the person with schizophrenia and their family members 171 3.9 Enhancing the social recovery of people with schizophrenia by addressing environmental barriers. 183 V. MODULE 4 : APPENDIX (FORMS) 199 COPSI Manual 2012 5 FIRST PERSON ACCOUNT: Baljeet Aljeet Ahluwalia chizophrenia! – The word fell like a bombshell on my already shattered universe. After almost two months of Sfighting demons and slashing my wrists to save the world from Osama Bin Laden, I was told that it was all a play of chemicals in my head.