i

Evaluation of a Community Mental Health

programme in a tribal area – South India

Dr. Mahantu Yalsangi

Dissertation submitted in partial fulfillment of the

requirements for the award of the degree of

Master of Public Health

Achutha Menon Centre for Health Science Studies

Sree Chitra Tirunal Institute for Medical Sciences and

Technology

Thiruvananthapuram, Kerala.

October 2011

ii

Acknowledgement

I would begin with thanking my beloved father, mother and sister, who have always

supported and encouraged me throughout my life, especially when I decided to work in a

rural setup after my graduation.

I would like to express my sincere gratitude to Dr. P.G. Premila, Mr. Manoharan, Dr.

Nandakumar, Dr. Shyla, and Dr. Sunil, who have been a source of inspiration to a lot of

people like me.

This piece of work would not have taken shape without the help of my mentor and guide

Dr. V. Raman Kutty. I thank him for his unconditional support all through the study.

I thank Dr. Jithesh who has supported, guided and taught me throughout this course and

has been very humble in repeatedly explaining various aspects of this study.

I express heartfelt thanks to my Gudalur family and ASHWINI team, who have

immensely supported me to pursue this course and also to conduct this study.

I thank Dr. K. R. Thankappan, Dr. Sundari Ravindran, Dr. Sankara Sarma, Dr. Ravi

Verma, Dr. Biju Soman, Dr. Manju Nair, Dr. Mala Ramanathan, and Mrs. Sheena for

their valuable suggestions and guidance during this course and Mrs. Archana who spent

time and guided me in doing my qualitative analysis.

I thank Dr. Sherab Tsheringla, Dr. Arun, Mr. Tarsh, and Dr. Mrudulla, have helped me in

designing my study and Dr. Aneena, Mr. Sathiseelan, Mr. Krishnamurthy, Ms. Jiji, Mr.

Ramesh, Mrs. Janaki, Mr. Eshwaran, Dr. Mahesh, Dr. Prasan and Mrs. Malathi, who have

helped me in various aspects of my study.

It was wonderful time that I spent in Trivandrum with my classmates, seniors, and

juniors, especially Dr. Palash, Dr. Abhijeet, Dr. Siddhartha, Dr. Brajesh, Dr. Anoop, and

Dr. Lipika, Thank you all.

Finally I thank all those who have helped me directly or indirectly in these two years.

iii

Certificate

I hereby certify that the work embodied in this dissertation entitled

“Evaluation of a Community Mental Health programme in a tribal area –

South India.” is a bona fide record of original research work undertaken by

Dr. Mahantu Yalsangi, in partial fulfillment of the requirements for the

award of the degree of „Master of Public Health‟ under my guidance and

supervision.

Prof (Dr.) Raman Kutty, MD, MPH, MPhil;

Achutha Menon Centre for Health Science Studies,

Sree Chitra Tirunal Institute for Medical Sciences and Technology,

Thiruvananthapuram, Kerala.

October 2011.

iv

Declaration

I hereby declare that the work embodied in this dissertation entitled

“Evaluation of a Community Mental Health programme in a tribal area –

South India.” Is the result of original research and has not been submitted for

any other university or institution.

Dr. Mahantu Yalsangi, MPH-2010,

Achutha Menon Centre for Health Science Studies,

Sree Chitra Tirunal Institute for Medical Sciences and Technology,

Thiruvananthapuram, Kerala.

October 2011.

TABLE OF CONTENTS

LIST OF TABLES

v

LIST OF FIGURES

ABBREVIATIONS

ABSTRACT

CHAPTERS

Chapter 1 Introduction and review of literature Page No.

1.1 Introduction……………………………………………………………. 1

1.2 Global burden of mental illness………………………………………. 1

1.2.1 Depressive disorders………………………………………. 2

1.2.2 Substance use disorder……………………………………. 3

1.2.3 Schizophrenia……………………………………………… 4

1.2.4 Epilepsy…………………………………………………….. 5

1.2.5 Alzheimer’s disease………………………………………... 5

1.2.6 Mental retardation………………………………………… 5

1.2.7 Disorders of childhood and adolescence…………………. 5

1.2.8 Co morbidity………………………………………………. 6

1.2.9 Suicide……………………………………………………… 6

1.3 Spending on mental health……………………………………………. 6

1.4 Mental illness – Burden in India……………………………………... 7

1.4.1 Schizophrenia……………………………………………… 7

1.4.2 Mood disorders……………………………………………. 7

1.4.3 Substance abuse…………………………………………… 7

1.4.4 Mental retardation………………………………………… 7

1.4.5 Dementia…………………………………………………… 8

1.4.6 Epilepsy……………………….…………………………… 8

1.4.7 Suicides…………………………………………………….. 8

1.5 Resources in mental health sector……………………………………. 8

1.5.1 Psychiatric beds……………………………………………. 9

1.6 Mental health care in India…………………………………………… 9

1.7 Mental health care a paradigm shift…………………………………. 10

1.8 Community based mental health care……………………………….. 11

1.9 Examples of community based mental health care………………….. 11

1.10 Community Based Care versus Hospital Based Care………………. 14

vi

1.11 Programme evaluation………………………………………………... 14

1.11.1 Process evaluations………………………………………... 14

1.11.2 Outcome evaluations………………………………………. 15

1.12 Rationale of the study…………………………………………………. 15

1.13 Objectives of the study……………………………………………… 16

1.13.1 Major objectives…………………………………………… 16

1.13.2 Minor objectives…………………………………………… 16

Chapter 2 Methodology……………………………………………….. 17

2.1 Study Design…………………………………………………………… 17

2.2 Cross sectional survey………………………………………………… 17

2.2.1 Study setting……………………………………………….. 17

2.2.2 Sample size…………………………………………………. 17

2.2.3 Sample selection…………………………………………… 17

2.2.3.1 Intervention area………………………………… 17

2.2.3.2 Control area……………………………………… 19

2.2.4 Data collection……………………………………………... 20

2.2.5 Data storage………………………………………………... 20

2.2.6 Data Analysis and Statistical Measures………………….. 20

2.3 Secondary data………………………………………………………… 21

2.3.1 Data collection……………………………………………... 21

2.3.2 Sample selection…………………………………………… 21

2.3.3 Data storage………………………………………………... 21

2.3.4 Data Analysis and Statistical Measures………………….. 21

2.4 In-depth interviews……………………………………………………. 21

2.4.1 Sample selection…………………………………………… 21

2.4.2 Sample size…………………………………………………. 22

2.4.3 Data collection and storage……………………………….. 22

2.4.4 Data analysis……………………………………………….. 22

2.5 Triangulation…………………………………………………………... 22

2.6 Ethical considerations…………………………………………………. 22

2.6.1 Risks to the participants…………………………………... 22

2.6.2 Privacy and confidentiality……………………………….. 23

vii

2.6.3 Benefits……………………………………………………... 23

2.6.4 Informed consent process…………………………………. 23

Chapter 3 Programme description…………………………………… 24

3.1 History and context of the programme………………………………. 24

3.2 Organogram………………………………………………………….... 27

3.3 Present status…………………………………………………………... 28

3.4 Program management………………………………………………… 28

3.5 Medication supplies…………………………………………………… 28

3.6 Accessibility of services and transportation………………………… 29

3.7 Case-finding methods…………………………………………………. 29

3.8 Monitoring……………………………………………………………... 30

3.9 Referral systems……………………………………………………….. 30

3.10 Information systems…………………………………………………... 30

3.11 Livelihood Programs………………………………………………….. 31

Chapter 4 Results……………………………………………………… 32

4.1 Cross sectional survey………………………………………………… 32

4.1.1 Sample characteristics……………………………………. 33

4.1.2 Distribution of scores……………………………………… 34

4.1.3 Two-way anova……………………………………………. 36

4.1.4 Multivariate analysis……………………………………… 39

4.2 Secondary data………………………………………………………… 41

4.2.1 Early detection / Duration of untreated illness………….. 41

4.2.2 Continuity of care / follow-up…………………………….. 41

4.3 Qualitative analysis……………………………………………………. 42

4.3.1 Help community take responsibility for mentally ill patients... 42

4.3.2 Provide treatment close to home…………………………. 43

4.3.3 Give economic support during hospitalization………….. 43

4.3.4 Rehabilitation where applicable………………………….. 44

4.3.5 Other findings……………………………………………... 45

4.3.6 Strengths and bottlenecks in the programme…………… 46

4.3.6.1 Strengths…………………………………………. 46

viii

4.3.6.2 Bottlenecks……………………………………….. 46

4.4 Triangulation………………………………………………………….. 47

4.4.1 Awareness………………………………………………….. 47

4.4.2 Early detection…………………………………………….. 47

4.4.3 Continuity of care…………………………………………. 47

Chapter 5 Discussion and conclusion………………………………… 48

5.1 Discussion……………………………………………………………… 48

5.1.1 Cross sectional survey…………………………………….. 48

5.1.1.1 Sample characteristics…………………………... 48

5.1.1.2 Distribution of scores by other variables………. 48

5.1.1.3 Two way anova…………………………………... 48

5.1.1.4 Multivariate analysis……………………………. 49

5.1.2 Secondary data analysis…………………………………... 49

5.1.2.1 Early detection…………………………………... 49

5.1.2.2 Continuity of care / follow-up………………….. 49

5.1.3 Qualitative analysis……………………………………….. 50

5.1.3.1 Help community take responsibility for

mentally ill patients……………………………… 50

5.1.3.2 Provide treatment close to home……………….. 50

5.1.3.3 Give economic support during hospitalization... 50

5.1.3.4 Rehabilitation where applicable………………... 51

5.1.4 Triangulation………………………………………………. 51

5.2 Strengths and limitations of the study……………………………….. 51

5.2.1 Strengths…………………………………………………… 51

5.2.2 Limitations of the study…………………………………… 51

5.3 Recommendations……………………………………………………... 52

5.4 Conclusions…………………………………………………………….. 52

REFERENCES

APPENDICES

ix

Appendix I: Informed consent – community members

Appendix II: Informed consent – In-depth interview

Appendix III: Interview schedule

Appendix IV: Interview guidelines - Beneficiary

Appendix V: Interview guidelines – Health Guide

Appendix VI: Interview guidelines – Health Animator

Appendix VII: Interview guidelines – Programme implementers

LIST OF TABLES:

Table 1.1 Human resources in mental health sector………………………... 8

Table 2.1 Distribution of clusters in intervention area……………………... 18

Table 2.2 Distribution of clusters in control area…………………………... 19

Table 4.1 Sample characteristics…………………………………………… 33

Table 4.2 Distribution of scores by other characteristics…………………... 34

Table 4.3 Factorial anova…………………………………………………... 36

Table 4.4 Model summary………………………………………………….. 39

Table 4.5 ANOVA table for the final model……………………………….. 40

Table 4.6 Coefficients of the final model…………………………………... 40

Table 4.7 Duration of untreated illness before detection…………………... 41

Table 4.8 Follow-up of patients……………………………………………. 41

LIST OF FIGURES:

Figure 3.1 Organogram of three tier system of ASHWINI…………………. 27

Figure 3.2 Organogram of Gudalur team…………………………………… 27

Figure 4.1 Mean awareness scores with standard deviation in intervention

and control areas…………………………………………………. 35

Abbreviations

x

AC: Area center

ACCORD: Action for Community Organization Rehabilitation and Development

ACT: Area Center Team

ASHWINI: Association for Health Welfare in the Nilgiris

CBR: Community Based Rehabilitation

CDC: Centre for Disease Control and Prevention

CMC: Christian Medical College

CMH: Community Mental Health

DALY: Disability Adjusted Life Years

GAH: Gudalur Adivasi Hospital

GBD: Global Burden of Disease

HA: Health Animator

HG: Health Guide

LOCOST: Low Cost Standard Therapeutics

NIMHANS: National Institute of Mental Health and Neuro Sciences

OPC: Out Patient Care

PPS: Population Proportional to Size

SCARF: Schizophrenia Research Foundation

SRTT: Sir Ratan Tata Trust

THC: Tribal Health Counselors

TNHSP: Tamil Nadu Health Systems Project

WHO: World Health Organization

YLD: Years Lived with Disability

Abstract

xi

“Evaluation of a Community Mental Health programme in a tribal area – South India.”

Introduction: Mental illness is a burden on the family and the society. Social stigma,

difficulty in accessing mental health care facilities, poor adherence to treatment, irregular

follow up, and poverty aggravate the disease thus even a person with the potential to

recover suffers due to these reasons. If these problems could be addressed, then de-

institutionalization of care through a paradigm shift to community based care would be

the ideal situation for domiciliary treatment. Evaluation of community based mental

health programmes in resource poor settings can give information on the strengths,

drawbacks and effectiveness of such models, providing a platform for starting similar

initiatives in comparable settings.

Methodology: It is a mixed method study consisting of three components to assess the

programme objectives. The first is a cross sectional survey of 240 members of the

community to assess the awareness about mental illness in the intervention and control

areas of the Nilgiris district. The second component is secondary data analysis to study

the early detection of cases and providing continuity of care/follow-up of patients. The

third component is in-depth interview of the stakeholders to assess all the programme

objectives.

Results: The awareness score in the intervention area was found to be much higher than

the control area. The mean scores were 5.13 + 2.27 and 1.57 + 2.82 and median of 5 and

2 in the intervention and control areas respectively.

From the secondary data it was found that the mean (1497.91 to 474.33 days) and median

(730 to 30 days) duration of untreated illness has been decreasing.

Analysis of the in-depth interview indicated that programme has progressed to the desired extent

on all the objectives.

Conclusion: The programme has been successful in integrating the community mental

health programme with the primary health care and has progressed to a desired level in

achieving most of the objectives set forth. This model is viable and can be replicated

successfully in comparable settings.

1

CHAPTER 1: Introduction and review of literature

1.1 Introduction

The World Health Organization defines health as "a state of complete physical,

mental and social well-being and not merely the absence of disease or infirmity". It also

defined Mental health as “a state of well-being in which every individual realizes his or

her own potential, can cope with the normal stresses of life, can work productively and

fruitfully, and is able to make a contribution to her or his community”.1

Mental health in itself forms an integral and a very important aspect of health.2

Mental and behavioural disorders not only affect the individual but also the family and

the community. The individual not only suffers from the illness but in most instances will

not be able to participate fully in work and leisure activities. The patients suffer stigma

and discrimination. In many instances the families not only have to provide support but

also share the stigma and discrimination. A mental and behavioural disorder decreases the

quality of life of people affected by the disorder in a big way. The quality of life of the

affected individuals often is poor even after recovery.

Global burden of mental illness

In the world health report 2001 it is stated that there are about 450 million people who

suffer from some form of mental or behavioural disorder. Unfortunately only a very small

proportion of them receive the most basic treatment. Most of them suffer the illness

silently and bear all the consequences.3 Mental illnesses include unipolar depressive

disorders, bipolar affective disorder, schizophrenia, epilepsy, alcohol and selected drug

use disorders, Alzheimer‟s and other dementias, post traumatic stress disorder, obsessive

and compulsive disorder, panic disorder, and primary insomnia.

2

It is estimated that one member out of every four families is currently suffering from

mental or a behavioural disorder. More than 25% of people during their entire life time

will suffer from some form of mental and behavioural disorder. 3

Mental illness is

universal and can affect any individual irrespective of any group they belong to. It can

affect the men and women, rich and the poor, the urban and rural.

In 1990 about 10% of DALY‟s were attributed to mental and neurological disorders,

increasing to 12% in 2000. It is estimated that by the year 2020 neuropsychiatric

disorders will contribute 15% of the global burden of disease. 3

Approximately 31.7% of all the years lived with disability (YLD) can be attributed to

neuropsychiatric disorders. The major contributors are unipolar depression (11∙8%),

alcohol-use disorder (3∙3%), schizophrenia (2∙8%), bipolar depression (2∙4%), and

dementia (1∙6%).2

Overall prevalence of mental disorders is found to be same among men and women; the

differences that are present are due to the differential distribution of disorders, such as

Depression is found to be more prevalent among women and substance abuse is more

common among men. 3

1.2.1 Depressive disorders:

Unipolar depressive disorders rank third among the ten leading causes of global burden of

diseases. It contributes to 4.3% of the total DALY‟s lost and it is expected that by the

year 2030 unipolar depression will stand at rank one by contributing to 6.2% of the total

DALY‟s lost.4

Depression is more common in women than men.3 The global burden of disease 2000

estimated that the point prevalence of unipolar depression is 1.9% for men and 3.2% for

3

women. About 5.8% of men and 9.5% of women will experience some sort of depressive

disorder over a period of 12 months. However this may vary across different

populations.5

Adherence to treatment is very important factor in the prognosis of depression; it

is found that non adherence to treatment is up to three times higher among the depressed

people than the non-depressed people.6

One of the adverse outcomes of depression is

suicide; it remains one of the common and avoidable outcomes of depression. Around 15

% to 20 % of the depressed patients end their lives by committing suicide.7

Bipolar affective disorder refers to patients with depressive illness along with

episodes of mania characterized by elated mood, increased activity, over-confidence and

impaired concentration. According to GBD 2000, the point prevalence of bipolar disorder

is around 0.4%.5

1.2.2 Substance use disorder:

Abuse of some of the psychoactive substances results in the mental and

behavioural disorders. Some of the the harmful substances are alcohol, opioids such as

opium or heroin, cannabinoids such as marijuana, sedatives and hypnotics, cocaine, other

stimulants, hallucinogens, tobacco and volatile solvents. Most times the harmful use is

identified when damage has been done to the physical or mental health.

Tobacco and alcohol are the two major substances consumed in the world and

give rise to very serious public health problems.3 Globally there are approximately 1.2

billion people who smoke; by the year 2025 the number is expected to rise to more than

1.6 billion. Over 3 million deaths were attributed to tobacco in 1990 which would be

about 4 million deaths in the year 1998. It is estimated that tobacco attributed deaths will

rise to 8.4 million in 2020 and 10 million annual deaths by the year 2030. 8

4

Alcohol is also a commonly used substance in most regions of the world. The

point prevalence of alcohol use disorders (harmful use and dependence) in adults has

been estimated to be around 1.7% globally according to GBD 2000 analysis. The rates are

2.8% for men and 0.5% for women. The period prevalence of drug abuse and dependence

range from 0.4% to 4%, but the type of drugs used varies greatly from region to region.

GBD 2000 analysis suggests that the point prevalence of heroin and cocaine use disorders

is 0.25%.5

1.2.3 Schizophrenia:

Schizophrenia is a severe disorder that typically begins in late adolescence or

early adult-hood. It is characterized by fundamental distortions in thinking and

perception, and by inappropriate emotions. Schizophrenia is found approximately equally

in men and women, though the onset tends to be later in women, who also tend to have a

better course and outcome of this disorder.3

The GBD 2000 reports a point prevalence of 0.4% for schizophrenia; in the global burden

of disease study, schizophrenia accounted for 1.1% of the total DALYs and 2.8% of

YLDs.5

Quite a few individuals suffering from schizophrenia attempt suicide some time during

the course of their illness. A study showed that 30% of patients suffering from this illness

had attempted suicide at least once during their life time,9 and about 10% of people

suffering from schizophrenia end life by suicide. On an average this illness reduces 10

years of an affected person‟s life.10

5

1.2.4 Epilepsy:

It is estimated that there are about 37 million people globally are suffering from

primary epilepsy and when epilepsy caused by other diseases of injury is also included

the total number increases to 50 million and more than 80% of these individuals live in

the developing countries and epilepsy contributes to 0.5% of the total disease burden, 5

there is this increased burden as epilepsy goes untreated in many cases especially in the

developing countries. Significant stigma and discrimination is attached to epilepsy which

prevents them from participating fully in normal and leisure activities.3

1.2.5 Alzheimer’s disease:

Alzheimer‟s and other dementia‟s have an overall point prevalence of 0.06% and

prevalence among people above 60 years of 5% for men and 6% for women. There is no

sex difference in the incidence of the disease; prevalence is more in women due to the

increased life expectancy of the women. Alzheimer‟s disease contributes to 0.84% of

DALY‟s and 2% of YLD‟s.5

1.2.6 Mental retardation:

The overall prevalence of mental retardation is about 1% to 3%. It is more

common in the developing countries due to higher incidence of injuries and anoxia during

birth and early childhood brain infections. Mental retardation causes a huge burden to the

individual and the family. In some cases it becomes difficult for the individual even to

carry out the daily routine activities, thus depending on others for help.3

1.2.7 Disorders of childhood and adolescence:

Mental and behavioural disorders are very common among children and

adolescents. However not much of effort is made in understanding this aspect of mental

6

health. The overall prevalence of mental and behavioural disorder among children is

found to be about 10% to 20%.3

1.2.8 Co morbidity:

Co-morbidity is a situation when two or more mental and behavioural disorders occur

together in an individual.3 A study in the United States showed that 79% of all mentally

ill people were co-morbid and only in 21% of patients a mental disorder presented

singly.11

A 12 month prevalence of co-morbid mood-anxiety disorder in United Stated was

found to be 3%.12

1.2.9 Suicide:

Suicide is turning out to be a major public health problem. In the year 1996 the

age adjusted suicide rates were calculated for 53 countries for which the complete data

were available. The suicide rates were 15.1 per 100000. However the differential suicide

rates for men and women were very different; the male suicide rate was 24 per 100000

and for females it was 6.8 per 100000. The attempt to suicide may be around 20 times

higher than the completed suicides.3 Suicides contribute to 1.3% of all the DALY‟s.

5

1.3 Spending on Mental health:

Out of 101 countries from which the data were available 20.9% covering a population of

more than 1 billion, spend less than 1% of the total health budget on mental health. In the

Regions of Africa and South-East Asia, 70.0% and 50.0% of countries respectively spend

less than 1% of their health budget on mental health care. At the same time more than

61.5% of countries in the European Region spend more than 5% of their health budget on

mental health care.13

7

1.4 Mental illness – Burden in India

Several studies in India have reported a wide a range of prevalence of mental and

behavioural disorders. However the prevalence of mental and behavioural disorders in

India is derived as a median value of 65 per 1000 population from two studies conducted

in India. The prevalence rates among females are found to be higher by 20% to 25 %. The

prevalence of mental and behavioural disorders is higher in the urban areas.14, 15

1.4.1 Schizophrenia:

Prevalence of schizophrenia ranges from 1.1 to 14.2 per 1000 population.14, 15

All

India prevalence of schizophrenia is taken as 2-3 per 1000 population.

1.4.2 Mood disorders:

Studies have showed that prevalence of mood disorders to be about 11 to 34 per

1000 in rural, 18 to 37 per thousand in urban areas.14, 15

Mood disorders were more in the

urban areas and in women.

1.4.3 Substance abuse:

The overall prevalence of substance abuse in India is 6.9 per 1000 with prevalence

of 5.8 and 7.3 per thousand in the urban and rural areas respectively. The prevalence

among men and women were 11.9 and 1.7 per 1000 respectively.15

1.4.4 Mental retardation:

The prevalence of mental retardation was found to be 6.9 per 1000 population

with a higher prevalence in males. The prevalence in the urban and rural areas were 8.9

and 6.4 per 1000 respectively.15

8

1.4.5 Dementia:

The prevalence of dementia is about 31 per 1000 in those who are 60 years or

above or 2.48 per 1000 population of all ages.15

1.4.6 Epilepsy:

A study conducted in Vellore, south India showed the prevalence of epilepsy to be

3.83 per 1000 population. The prevalence in the urban area was 6.23 per thousand and in

the rural area were 3.04 per thousand. 16

1.4.7 Suicides:

It is estimated that approximately 1.2 lakh people in India commit suicide every

year; more than four lakh people attempt it. Suicides in India vary from region to region.

Studies have reported incidence of suicides from 2.36 to 44.7 per 100000 populations.17,

18, 19

1.5 Resources in mental health sector:

A huge gap exists between the high, and low income countries in mental health

care resources, with most of the resources concentrated in the high income countries. The

following table shows us the gap present between high, low-middle and low income

countries among different professionals.20

Table 1.1: Human resources in mental health sector.

Median Professionals per

100,000 population

High income

countries

Low-Middle

income

countries

Low income

countries

Psychiatrists 8.59 0.54 0.05

Nurses 29.15 2.93 0.42

Psychologists 3.79 0.14 0.02

Social Workers 2.16 0.13 0.01

9

A world health organization report pointed out that the density of psychiatrists in or

around the largest city of a state in low and middle income country was 2.5 times greater

than the density of psychiatrists in the entire state. The density of nurses is 4.13 times

greater in the largest city than the entire State.21

1.5.1 Psychiatric beds:

The mean and median psychiatric beds per 10,000 populations in low income

countries are 0.68 and 0.24 respectively and that of the high income countries are 8.94

and 7.5 respectively. There are approximately 1.84 million psychiatric beds in the world

and 68.6% of them are in the mental hospitals.13

1.6 Mental health care in India:

Mental health has been long neglected as a public health problem in developing

countries. In India, like in many other developing countries, the reasons for this neglect

are complex; they include cultural beliefs of the population, lack of technical and

financial resources and inadequate political commitment.22

India being one of the pioneers in primary health care, initiated its National Mental

Health Program in 1982 with the objective of providing basic mental health care to all by

integrating it with primary health care at four levels, primary care at the village level,

primary health centers, district hospitals, and psychiatric units at medical colleges.

However, the program maintained a low profile due to financial constraints.23, 24

Integration of mental health care into the primary care was piloted in Bellary,

Karnataka.25

This model was adopted by the government of India and the District Mental

Health Programme was launched as part of the national mental health programme in

1995.24

This has been planned to spread to 100 districts in the country. Currently, the

10

District Mental Health Programme is under implementation in 123 Districts throughout

the country. Grants have also been released for upgradation of Psychiatric wings of 75

Government Medical Colleges/General Hospitals and modernization of 26 Mental

Hospitals.26

1.7 Mental health care a paradigm shift.

Over a few centuries people with mental and behavioural disorders have been

treated in various ways. They were given the status of god and were worshiped, compared

to the evils, burnt to death3 and put in institutions which were called lunatic asylums and

some places as madhouse. 27, 28

However in almost all the developing countries mental institutions never existed in a

scale to be replaced by the community care. In India there are several holy places such as

temples, dargas where the mentally ill are treated. In one of many such mental asylums an

incidence occurred in Erwadi, south India where 27 patients were burnt in a fire accident

where they were chained to a pillar. This brought out the unjust and inhumane treatment

towards the mentally ill.28

In the second half of the 20th

century there was a shift in the mental health care paradigm

owing mainly to the introduction of new drugs, human rights movements, failure of the

asylums and the social and mental components were firmly incorporated into the

definition of health.3 and in the past few decades this has resulted in a slow shift from

institutional care towards community-based treatment and rehabilitation in the

management of mental disorders.27

11

1.8 Community based mental health care:

Community-based care is the care that the client can access nearest to home,

which encourages participation by people, responds to the needs of people, encourages

traditional community life and creates responsibilities. Community mental health services

include a range of services that provide care to people with mental disorders in the

communities where they live and work.29, 30

Community mental health (CMH) refers primarily to treatment and intervention

programmes initiated and implemented outside institutions such as mental hospitals.

Basically CMH deals with the care of mentally ill persons in the community where the

communities itself participate in the process. Over a few years, CMH has broadened its

concern to address all mental health problems of the population.

CMH not only deals with different levels of mental morbidity in a population but it is also

concerned with the perceived psychological welfare and wellbeing of society. CMH

attempts to use methods and techniques of behavioural sciences and public health to

prevent mental disorders, promote mental health and improve the general quality of life.

CMH also includes service delivery strategies for identification, management as well as

rehabilitation of persons with various mental disorders. The practice of CMH requires

coordinated and multi-sectored action involving a number of government sectors as well

as nongovernmental and community-based organizations.31

1.9 Examples of community based mental health care:

A prospective study was conducted in a resource poor setting in India to compare

community based rehabilitation (CBR) and outpatient care (OPC), the outcomes

measured using Positive and Negative Symptom Scale and the modified WHO Disability

12

Assessment Schedule at the end of 12 months. Among the fully compliant patients CBR

had better outcomes than OPC among the men. Within the CBR fully compliant patients

had better outcome than partially or non compliant patients. Compliance was also better

in the CBR compared to OPC. This model has three tiers, first the outpatient care, second

the community health workers and third the rehabilitation involving the family and

community members. Community based rehabilitation is a feasible model in the resource

poor settings which involves active participation by the community and requires low

levels of technical expertise to deliver the services.32

A qualitative study was conducted in Jamaica with the objective to find out whether de-

institutionalization and integration of community mental health into the primary health

care reduces the stigma associated towards the mentally ill people. With 20 focus group

discussions it was found that there was reduction in the stigma associated with mental

illness over a period of time and this could be possibly due to the de-institutionalization.33

Another prospective cohort study was conducted on the outcomes of people with

psychotic disorders in community based rehabilitation in rural India. There were marked

improvements in the patients and poor outcomes were found in the patients who dropped

out. Being in a self help group, involvement of the family in the programme and medicine

adherence had better outcomes while lack of formal education, diagnosis of schizophrenia

and dropping out of the programme had poor outcomes. This study concluded that

community based rehabilitation is acceptable and feasible intervention for people with

psychosis in a resource poor setting.34

A meta analysis done on effective clinical interventions that community psychiatry can

implement to reduce non-adherence in psychosis patients concluded that community

13

psychiatric services can use effective clinical interventions backed by scientific evidence

for reducing patient non-adherence.35

Schizophrenia Research Foundation (SCARF), an NGO in Chennai had established a

community clinic in 1989 in Thiruporur, which was functional till 1999. In 2005 a follow-

up was done to know the status of the people enrolled in the programme. Out of the 185

patients followed up, 15% had continued treatment, 35% had stopped treatment, 21% had

died, 12% had wandered away from home and 17% were untraceable. Of the patients who

had discontinued treatment 25% were asymptomatic while 75% were acutely psychotic.

The study concluded that community based initiatives in the management of mental

disorders however well intentioned will not be sustainable unless the family and the

community are involved in the intervention program with support being provided

regularly by mental health professionals.36

Another study was conducted in rural Tasmania to evaluate the effectiveness of a primary

care mental health service to usual mental health service and no treatment over a period

of 12 months. Changes in the symptomatology were assessed using the SCL-90R

summary scales, and changes in quality of life were assessed using the EuroQOL. It was

found that the participants who were treated by the primary mental health care worker

showed significant improvements in symptoms and quality of life compared to the other

groups.37

A study conducted on suicides in Finland found that well developed community mental

health services are associated with lower suicide rates than the services oriented towards

inpatient care.38

14

A follow-up study on the community outreach programme conducted in rural Karnataka,

India found that the participants experienced better clinical, functional and economic

outcomes.39

1.10 Community Based Care versus Hospital Based Care:

There are no scientific evidences to say that hospital based mental health care

model is better than the community based care nor is there evidence to say that

community based care and services alone can provide a comprehensive and better care

than the hospital care model. A balanced care that has the components of both the hospital

care model and the community based care and integrating mental health services into

primary health care is the most viable way of closing the gap and ensuring that people get

the mental health services.40, 41

1.11 Programme evaluation:

Program evaluation is a systematic method for collecting, analyzing, and using

information to answer basic questions about a program.42

There are different types of evaluation and different types of terms used such as formative

evaluation, summative evaluation, process evaluation, outcome evaluation, cost-

effectiveness evaluation, and cost-benefit evaluation.42

They are broadly classified as

process evaluation and outcome evaluation.

1.11.1 Process evaluations assess whether an intervention or program model was

implemented as planned, whether the intended target population was reached, and what

are the major challenges and successful strategies associated with program

implementation.

15

1.11.2 Outcome evaluations determine whether, and to what extent, the expected

changes in child or youth outcomes occur and whether these changes can be attributed to

the program or program activities.42

Centre for Disease Control and Prevention (CDC) recommended a framework for

programme evaluation in public health.43

The framework explains the steps in programme

evaluation and the standards need to be met in a programme evaluation.

1.12 Rationale of the study

Mental illness is a burden on the family and to the society. Social stigma,

difficulty in accessing mental health care facilities, poor adherence, irregular follow up,

and poverty aggravate the disease; thus even a person with the potential to recover suffers

due to these reasons. If these problems could be addressed, then de-institutionalization of

care through a paradigm shift to community based care would be the ideal situation for

domiciliary treatment. Evaluation of community based mental health programmes in

resource poor settings can give information on the strengths, drawbacks and effectiveness

of such models, providing a platform for starting similar initiatives in comparable

settings.

16

1.13 Objectives of the study:

1.13.1 Major objectives

To assess the Community Mental Health Programme run by ASHWINI in a

tribal area in the Nilgiris at the end of 5 years, vis a vis the programme

objectives.

The programme objectives are:

Create awareness in the community about mental illness

Ensure early detection and treatment.

Provide continuity of care.

Help the community take responsibility for its mentally ill patients.

Provide treatment close to home.

Give economic support during hospitalization.

Rehabilitation where applicable.

1.13.2 Minor objectives

To identify the strengths and bottlenecks of the programme.

17

Chapter 2: Methodology

2.1 Study Design: Both “Quantitative” and “Qualitative” research methods were used.

The study had three components as follows:

Component 1: Cross sectional survey of the community members in the intervention and

control area to assess the awareness about mental illness.

Component 2: Secondary data to study the second and third programme (Early detection

and continuity of care) objectives.

Component 3: In-depth interviews with the stake holders of the community mental health

programme to assess programme objectives 4 to 7 and minor objective of the study.

2.2 Cross sectional survey:

2.2.1 Study setting: The study was conducted in the Gudalur, Pandalur, and Masinagudi

areas of the Nilgiris district, Tamil Nadu, India.

2.2.2 Sample size: Assuming a 20% difference in awareness levels between control and

intervention areas, to get a study result with 80% power and a maximum alpha error of

5%, the sample size calculated using epi-info version 3.5.2 statcalc was 122. Accounting

for design effect of 1.5 and non response rate of 20% the sample size was 236, rounded to

240.

2.2.3 Sample selection:

2.2.3.1 Intervention area

Total number of blocks = 8

Total number of hamlets = 203

18

Cluster sampling with population proportional to size (PPS) was adopted. Number of

hamlets selected in each area was proportional to the size of the stratum. The hamlets

from each area were selected by the lottery method. From each cluster, 5 individuals were

chosen randomly.

Total no of clusters = 24

No of samples per cluster = 5

Total sample = 120

Distribution of clusters:

Table 2.1: Distribution of clusters in intervention area

Block/Area No of hamlets % of total population No of clusters

Ayyankoly 29 14.28 3

Devala 17 8.37 2

Devarshola 32 15.76 4

Erumad 28 13.79 4

Gudalur 24 11.82 3

Pattavayal 29 14.28 3

Ponnani 18 8.86 2

Srimadurai 26 12.8 3

Total 203 100 24

19

2.2.3.2 Control area:

Total number of villages = 6

Cluster sampling with population proportional to size (PPS) was adopted. Number of

clusters selected in each village was proportional to the size of the stratum. The hamlets

from each area were selected by the lottery method. From each cluster, 5 individuals were

chosen randomly.

Total no of clusters = 24

No of samples per cluster = 5

Total sample = 120

Distribution of clusters:

Table 2.2: Distribution of clusters in control area

Villages Population % of total population No of clusters

Annaikatti 883 34.2 8

Bokkapuram 1023 39.7 9

Chokkanalli 213 8.2 2

Masinagudi 350 13.6 3

Siriyur 53 2.0 1

Vazhathottam 58 2.2 1

Total 2578 100 24

20

2.2.4 Data collection: The data were collected by the principal investigator and two

others who were trained prior to the data collection.

2.2.5 Data storage: All data were kept safely with the principal investigator, who bears

the sole responsibility for safe keeping and any breach of confidentiality. Data shall be

kept with the principal investigator for any future reference.

2.2.6 Data Analysis and Statistical Measures: A pre tested structured interview

schedule was used which had positive and negative scoring. The interview schedule

contained nine questions. During the study it was noted that respondents either did not

respond or gave inappropriate responses consistently for two questions. Hence, these two

questions were excluded from the final analysis.

Each question had three options, agree, unsure and disagree. There is a pre-set correct

answer for each question. If the answer was correct a score of + 1 was given, scored - 1 if

the answer was wrong and 0 if the answer was unsure. The total score of each individual

for all the 7 questions, ranging between – 7 and + 7, was calculated and used for the

analysis.

Descriptive analysis was done to look at the sample characteristics. Relation between the

predictor and outcome variables were explored using standard statistical methods. Further

multivariate analysis was done using multiple linear regression which yielded the final

model for the first programme objective. All these data were entered in Epidata version

3.1 and analysed in SPSS version 17.

21

2.3 Secondary data

2.3.1 Data collection: Secondary data were collected from the unlinked anonymous

patient records to assess the second and third programme objectives that are the early

detection and continuity of care.

2.3.2 Sample selection: For the second programme objective that is the early detection

all the patient records were reviewed.

For the third programme objective that is the continuity of care a sample of the patient

records were used. The inclusion criteria was that all the patient records who were on

treatment during the year 2010 who‟s treatment was started on or before January 2010

and the treatment was not stopped before December 2010.

2.3.3 Data storage: All data are kept safely with the principal investigator, who shall

bear the sole responsibility for safe keeping and any breach of confidentiality. Data shall

be kept with the principal investigator for any future reference.

2.3.4 Data Analysis and Statistical Measures: All the data were entered in open office

spreadsheet and analyzed in SPSS version 17.

2.4 In-depth interviews:

2.4.1 Sample selection: The study population consisted of beneficiaries of programme,

health volunteers, health animators and the programme implementers. Whoever agreed to

be interviewed were included. Everyone approached agreed to participate in the study.

The researcher was not able to approach one of the programmed implementer.

22

2.4.2 Sample size:

Beneficiaries: 5

Health Volunteers: 5

Health Animators: 5

Programme implementers: 2

2.4.3 Data collection and storage: Data were collected after receiving consent, using a

pre designed guideline. The respondent was interviewed in Malayalam or Tamil or

Kannada or English according to his/her choice. Twelve interviews were conducted in

Malayalam, two in Tamil, one in Kannada and two in English. All the participants agreed

for the interviews to be digitally recorded. These records were later transcribed and

translated by the researcher. All the digital recordings and transcripts are kept safely with

the principal investigator. It shall be completely destroyed within one year of submission

of the study.

Field notes were prepared after the village visits and were used in the analysis.

2.4.4 Data analysis: Deductive method was used to analyze the data, using the guideline

as template.

2.5 Triangulation: I have tried to triangulate the findings from various components in

this study.

2.6 Ethical considerations:

2.6.1 Risks to the participants: There were no risks involved in participating in the

study. A person trained on counseling was present all the time in case of any breakdown.

23

2.6.2 Privacy and confidentiality: Identity of the participants was only known to the

principal investigator. Once the consent was taken, further analysis was done only on the

basis of the characteristics of the participants.

2.6.3 Benefits: This study did not have any direct benefit to the participant. However the

study results may bring forth policy changes which may prove beneficial to the

community at large.

2.6.4: Informed consent process: Witnessed consent was taken. After all the information

was provided to the participant a witness signed the form after the participant was willing

to take part in the study. Informed consent was taken from the Health Animators and

understood consent for the programme implementers. Clearance was obtained from the

institutional ethics committee before commencement of the study.

24

Chapter 3: Programme Description

3.1 History and context of the programme:

The Community Mental Health Programme here reviewed, was instituted by Association

for Health Welfare in the Nilgiris (ASHWINI) in Gudalur, a town in the Nilgiris District

of Tamil Nadu, in 2005.

ASHWINI itself is a part of the voluntary organization ACCORD (Action for Community

Organization Rehabilitation and Development), was set up in 1987, to address the health

needs of about 13000 adivasis spread over 200 villages, in the Gudalur and Pandalur

taluks of the Nilgiris.

A 20 bedded hospital Gudalur Adivasi Hospital (GAH) was started by ASHWINI 1990 in

response to the high incidence of preventable mortality and morbidity among adivasis

which the local Government hospital was not equipped to handle

ASHWINI has a three-tier health system:

The first tier consists of trained Village Health Guides (HG) in the village.

The second tier consists of eight „Area Centers‟ (AC), one in each of the eight

zones, (each Area Centre covers between 20 to 40 adivasi villages.)

The third tier is the Gudalur Adivasi Hospital in the Gudalur town (run by

ASHWINI).

The Village Health Guides are unpaid volunteers who are trained in the basic health

issues. They form the link between the village and the larger community.

Area Centers: The whole project area is divided into eight zones for easy logistical

accessibility, each consisting of Area center Team (ACT) comprising of health, education

25

and development personnel. Health delivery is managed by trained adivasi nurses called

„Health Animators‟ (HA) from the community. They undergo a three to four years of

training at the GAH before being placed in the AC. The community members from the

surrounding villages have access to these centers for the treatment of common illnesses

and follow-up. Seriously ill patients are referred to Gudalur Adivasi Hospital (GAH) in

the Gudalur town.

Gudalur Adivasi Hospital: With a team of five full-time doctors, (a surgeon, gynecologist,

an internal medicine specialist, two physicians), and some visiting specialists, it provides

secondary level health care to the adivasi population in the region.

ASHWINI was providing only curative care at the GAH, both in-patient and out-patient

care was provided. The follow-up of these patients was not systematic and adequate due

to various reasons but primarily due to lack of awareness about mental illness and the

need for care among the community members, HG and the HA.

Over a period of time it was learnt that suicides were one of the main causes of death

among the community and most of the people who committed suicide had some form of

mental illness. The need for a systematic programme was felt at this juncture.

Therefore ASHWINI with the help of SRTT (Sir Ratan Tata Trust) initiated a community

mental health programme to address the issues of ineffective care due to limited follow-

up, high suicide rate and a general lack of awareness. The programme was funded by the

SRTT for a period of three years.

26

With community participation as the main thrust of the programme, the programme was

started with the following objectives:

Create awareness about mental illness in the community

Ensure early detection and treatment.

Provide continuity of care.

Help the community take responsibility for its mentally ill patients.

Provide treatment close to home.

Give economic support during hospitalization.

Rehabilitation where applicable.

To achieve these objectives the programme started off with the following activities.

Workshops were conducted by psychiatrists from National Institute of Mental

Health and Neuro Sciences (NIMHANS), Bangalore, St John‟s medical college,

Bangalore and Christian Medical College (CMC), Vellore. Doctors, Hospital staff

and HA were trained in basic psychiatry.

Regular training sessions were conducted for the HA by the doctors from GAH.

Five HG from each project area were selected and trained specifically in mental

health to identify people with symptoms of mental illness. The training was spread

over a period of one year and the trainings for the HG were conducted by the

doctors, HA and programme coordinator from GAH.

27

3.2 Organogram: The following two figures show the three tier system of ASHWINI

and how GAH fits in a larger organization.

Figure 3.1: Organogram of three tier system of ASHWINI.

Figure 3.2: Organogram of Gudalur team.

28

3.3 Present status:

The programme coverage has spread over a period of time and currently the programme

caters to a population of about 20000 adivasis spread over 250 villages. More than 230

HG from various villages have been trained by the implementers and the HA; ongoing

training sessions for the HG are being conducted.

Tribal Health Counselor‟s (THC) has been appointed at the Primary Health Center and

the Taluk hospital by the Tamil Nadu Health Systems Project (TNHSP). The THC forms

the link between the community and the Government health centers. Training for the

THC are being done by ASHWINI.

The mental health programme is integrated into the routine community health activities of

ASHWINI. The programme also provides clinical care to the non tribal patients attending

the hospital with mental health problems; this however is hospital based only.

3.4 Program management:

The programme is managed by five doctors none of whom is a specialist in psychiatry.

Three of the doctors were trained in basic psychiatry by the visiting psychiatrists. There

are 14 HA in the eight area centers and more than 230 HG from various villages who are

actively involved in the programme.

3.5 Medication supplies:

Some of the required medicines are purchased from the LOCOST (Low Cost Standard

Therapeutics-- a public, non-profit charitable trust, registered in Baroda, India). One of

the medicines is supplied by the Government of Tamilnadu. In case of a patient requiring

a medication that is not available in the low cost sector then it is purchased from a

pharmaceutical dealer directly.

29

3.6 Accessibility of services and transportation:

The programme provides inpatient and outpatient care at the hospital, and community

clinics are conducted at the area centers. Four of the eight area centers have been

provided with a mobile van by the TNHSP (Tamilnadu Health Systems Project) for the

health care providers to visit the villages every month. Follow-up of patients and the

community clinics are conducted in the village. The respective area Health Animator/s

and a doctor would be present during the visit; frequently the HG is also present.

In the other four areas, clinics are conducted every month at the area center by a doctor

from the hospital, the HA concerned and occasionally the HG. A Jeep is hired for the visit

to the area center, and the community members are informed about the clinic beforehand.

In case of difficulties in transportation of patients to the area center or hospital, the doctor

visits the patients at the doorstep.

The programme does not have its own transport facility. In case of emergencies the

transportation costs are reimbursed to the beneficiaries and also the 108 emergency

services started recently in the area are utilized to transports acutely ill patients to the

hospital.

3.7 Case-finding methods:

When the programme was started, a door to door survey was conducted with the help of

HG and the HA, to identify new cases. Currently many suspected cases are brought to the

attention of the health staff by HG in the village, the HA are now well trained in

diagnosing mental health cases which are confirmed by the doctors at the area center or

the hospital.

30

3.8 Monitoring

The entire three tiers are involved with the monitoring of the beneficiaries. The HG at the

village level monitors all the beneficiaries at their village. The HA monitors the

beneficiaries during their regular village visit and also keep in touch with the HG. The

GAH monitors all the areas through the HA and the HG.

3.9 Referral systems:

Supervised mental health care is available only at the Gudalur Adivasi Hospital; therefore

in case of an acute illness, the patients are referred to the GAH. If the condition does not

need immediate care, then the patient is referred to the area center on the day of doctors‟

visit. If transportation or referral to area center or Gudalur Adivasi Hospital is not

possible, then the doctor visits the patient at his or her house. In case a patient needs

immediate specialist care, then the patient is referred to a tertiary center which would be

about four to nine hours journey by road. The costs towards referrals are met by the

hospital.

3.10 Information systems:

Each patient‟s details when enrolled in the programme will be entered in a patient record.

Two sets of records are maintained, one set of records at the hospital and the other in the

area centers. These records are updated on a monthly basis.

Each family has a book in which all the health related details of the family are entered at

the time of consultation with the doctor or the HA and they are advised to bring the

family record on every visit.

31

3.11 Livelihood Programs:

There are several livelihood programmes initiated by ACCORD and ASHWINI such as

cattle distribution program, tea planting programmes, land redemption schemes, crop

loans, adivasi tea leaf marketing, adivasi credit funds, community fund, etc. These

programmes are for the community people in general and special attention is provided

particularly to the beneficiaries of the community mental health programme.

32

Chapter 4: Results

This chapter describes the outcomes of data analysis in concordance with the objectives.

Quantitative part of the study is presented first.

After scrutinizing and cleaning the entered data, they were analyzed using SPSS version

17. The data were analyzed for identifying the characteristics of the population and the

association between the independent and the outcome variables (awareness, early

detection and continuity of care). The results are organized first with description of

sample characteristics, distribution of awareness scores. Bivariate analysis and

multivariate model predicting better awareness regarding mental illness has been done.

Chapter also includes qualitative in-depth interviews with the stakeholders of the

community mental health programme, which were analyzed using qualitative methods.

4.1 Cross sectional survey:

Interview -schedule based cross sectional survey of the community members was

conducted in the intervention and control areas. Total of 240 participants were

approached. The non response rate in the intervention and control areas were 6.66% and

11.66% respectively.

33

4.1.1 Sample characteristics:

Table 4.1: Sample characteristics

Variable name Intervention N (%) Control N (%) Overall N (%)

No of participants 112 106 218

Age group

<=25

26-35

36-45

46-55

>55

22(19.6)

40(35.8)

25(22.3)

10(8.9)

15(13.4)

29(27.4)

33(31.0)

18(17.0)

15(14.2)

11(10.4)

51(23.4)

73(33.5)

43(19.7)

25(11.5)

26(11.9)

Mean age (SD) 37.88(13.8) 35.76(13.2) 36.5(13.6)

Sex

Male

Female

46(41.1)

66(58.9)

46(43.4)

60(56.6)

92(42.2)

126(57.8)

Marital status

Never married

Currently married

Separated

Widow/widower

2(1.8)

101(90.2)

1(0.9)

8(7.1)

16(15.1)

87(82.1)

0(0)

3(2.8)

18(8.3)

188(86.2)

1(0.5)

11(5.0)

Education

Never attended school

Up to 5th

Up to 10th

More than 10th

64(57.1)

28(25.0)

17(15.2)

3(2.7)

27(25.5)

40(37.8)

31(29.2)

8(7.5)

91(41.9)

68(31.1)

48(22.0)

11(5.0)

Tribes

Paniya

Kattunaicken

Bettakurumba

Mullukurumba

Irula

64(57.2)

14(12.5)

25(22.3)

9(8.0)

0(0)

0(0)

0(0)

5(4.7)

0(0)

101(95.3)

64(29.4)

14(6.4)

30(13.8)

9(4.1)

101(46.3)

34

4.1.2 Distribution of scores:

Table 4.2 Distribution of scores by other characteristics

Variable Mean SD Median Range P value

Area

Intervention

Control

5.13

1.57

2.27

2.82

5

2

10

13

<0.001

Age group

<=25

26-35

36-45

46-55

>55

3.04

3.56

3.98

2.80

3.23

3.02

3.22

3.05

3.30

3.07

4

4

5

4

4

12

12

13

10

10

0.50

Sex

Males

Females

3.12

3.60

3.26

3.02

4

4

13

12

0.27

Marital status

Never married

Currently married

Separated

Widowed/r

1.33

3.61

4

3

2.7

3.06

0

3.95

1

4.5

4

5

9

13

0

10

0.02

Education

Never attended school

Up to 5th

Up to 10th

More than 10th

4.02

3.09

2.73

3.00

2.90

3.08

3.44

3.28

5

3.5

3.5

4

10

12

13

9

0.08

Tribes

Paniya

Kattunaicken

Bettakurumba

Mullukurumba

Irula

4.98

5.50

4.40

6.00

1.56

2.53

1.99

2.43

1.22

2.88

5

6

5

7

2

10

7

9

3

13

<0.001

35

Figure 4.1: Bar plot – Mean awareness scores with standard deviation in

intervention and control areas.

36

4.1.3 Two-way ANOVA

Factorial (2-way) anova was done with awareness score as the outcome variable and

different combinations of predictor variables. The variable “intervention/ control” was

kept on one axis, with other predictors on the other axis, mainly to see if the effect of

intervention persisted even after adjusting for other variables.

Table 4.3 Factorial anova

Variable name Intervention Control P value

Mean SD Mean SD

Age group

<=25

26-35

36-45

46-55

>55

4.68

5.50

5.60

4.3

4.53

2.53

2.13

1.32

3.36

2.56

1.79

1.21

1.72

1.8

1.45

2.78

2.72

3.35

2.95

2.91

0.82

P value for intervention < 0.001

Variable name Intervention Control P value

Mean SD Mean SD

Sex

Males

Females

5.20

5.08

1.78

2.58

1.04

1.97

3.09

2.62

0.27

P value for intervention < 0.001

37

Variable name Intervention Control P value

Mean SD Mean SD

Marital status

Never married

Currently married

Separated

Widowed/r

4.91

5.29

5.47

6.33

2.49

1.99

1.97

1.15

1.93

1.55

1.23

1.75

2.74

2.77

3.14

2.91

0.26

P value for intervention <0.001

Variable name Intervention Control P value

Mean SD Mean SD

Education

Never attended school

Up to 5th

Up to 10th

More than 10th

4.91

5.29

5.47

6.33

2.49

1.99

1.97

1.15

1.93

1.55

1.23

1.75

2.74

2.77

3.14

2.91

0.92

P value for intervention <0.001

38

Variable name Intervention Control P value

Mean SD Mean SD

Tribes

Paniya

Kattunaicken

Bettakurumba

Mullukurumba

Irula

4.98

5.50

4.96

6.00

2.53

1.99

2.01

1.22

1.60

1.56

2.60

2.88

0.80

P value for intervention 0.009

39

4.1.4 Multivariate analysis:

Multiple linear regressions were done to build a predictor model for awareness using the

continuous and binary variables from the data using backward method. The predictor

variable tribe was not included in multivariate analysis as it cannot be clubbed into a

binary variable, and also because the control area constituted predominantly of Irula tribe

and a very small proportion of Bettakurumba tribe.

Table 4.4 Model summary

Model Variables R R2 Adjusted R

2 Std. error of

estimate

1 Age, sex, currently

married/currently unmarried,

not educated/educated,

intervention/control areas

0.584 0.341 0.326 2.570

2 Sex, currently

married/currently unmarried,

not educated/educated,

intervention/control areas

0.584 0.341 0.329 2.564

3 Sex, currently

married/currently unmarried,

intervention/control areas

0.584 0.341 0.331* 2.560

4 Currently married/currently

unmarried,

intervention/control areas

0.580 0.336 0.330 2.562

„* Selected as the final model.

40

Table 4.5 ANOVA table for the final model

Model Sum of Squares Df Mean Square F Sig

Regression 724.105 3 241.368 36.843 <0.001

Residual 1401.968 214 6.551

Total 2126.073 217

Table 4.6 Coefficients of the final model

Model Un standardized Coefficients t Sig

B Std. Error

(Constant) .493 .532 .927 .355

sex .425 .352 1.209 .228

Currently married / currently not

married 1.014 .507 1.999 .047

Intervention/Control 3.467 .349 9.922 <0.001

41

4.2 Secondary data

Secondary data were analyzed to answer some of the research questions

4.2.1 Early detection / Duration of untreated illness:

Table 4.7 Duration of untreated illness before detection in days.

Year N Mean SD Median Range P-value

2000-04 11 1497.91 1616.52 730 5415

<0.001

2005-06 51 1465.77 1446.82 730 6008

2007-08 29 506.93 850.73 120 2913

2009-10 31 148.87 220.09 45 728

2011 9 474.33 695.66 30 1823

All 131 876.46 11240.88 365 6020

4.2.2 Continuity of care / follow-up

Table 4.8 Follow-up of patients

Follow-up N(%)

Good (10-12 times a year) 69(77.5)

Satisfactory (7-9 times a year) 6(6.7)

Poor (0-6 times a year) 14(15.8) Irregular – 2(2.25)

Dropout – 9(10.15)

Migrated – 3(3.40)

Total 89(100)

42

4.3 Qualitative analysis

The in-depth interviews were conducted to assess some of the programme objectives.

Deductive method was used to analyze the qualitative data. All the data were coded

against the programme objectives and the coded data under each programme objective

were summarized.

4.3.1 Help community take responsibility for mentally ill patients:

Tribal people have always been taking care of the ill people in their community, taking

them to a temple or a mantravadi or other places and also support them at home. Hopes of

recovery from the illness tend to fade after several visits to different places and they begin

to accept that this illness or wrath cannot be cured which leads to neglecting the person

with mental illness but not to the extent of ill treating the person.

The fact that many people with similar illness have been cured and are back to their

regular activities, better awareness in the community has brought back the lost hope of

recovery from the illness. This has led to increased participation and responsibility by the

community in the recovery process of the mentally ill people.

“Even within family since they have seen people being cured, responsibility from their

side has increased as they know if medicines are given the person will become fine, so

they come to hospital or come to the area center so definitely there is an increase in the

participation of the family, but it’s not with all the families” [Health Animator]

43

4.3.2 Provide treatment close to home:

People were referred to a higher center such as medical colleges which were far off. Most

of the tribal people were not exposed to the outside world and would most often end up

not accessing health care. On several occasions health animators have accompanied the

beneficiaries to access health care at a referral center.

The geographical area, environmental conditions and little awareness about mental illness

were a hindrance at times to access health care.

The programme has ensured availability of treatment at doorstep by the presence of

health volunteers in the hamlet, health animator‟s regular visits to the hamlet, the doctor‟s

visit to the area centers and hamlets and the community owned hospital at Gudalur in case

of hospital admissions.

“Now we don’t refer people to Calicut or other place for treatment. And even if it’s still a

problem for people to collect medicines we go to their village every month and we give

the medicines. It’s our rule that even if a person with mental illness or TB don’t come to

us for medicines we have to go to them and give their medicines” [Health Animator]

4.3.3 Give economic support during hospitalization:

During the initial phases of the programme economic support such as transportation costs

and food at the hospital were provided to the beneficiaries and the bystanders as people

were not willing to come for the treatment. Over a period of time people have started

accessing the hospital for treatment and no extra support is provided for the beneficiaries.

Currently all the medicines provided at the village are free, a charge of Rs 10 is collected

at the area center and the hospital for whatever the medicines are prescribed to the

beneficiaries, all the hospital admissions are free, transportation costs in case of

44

emergency are reimbursed and in case of referral needing specialists care the costs are

borne by the hospital.

“They pay just Rs 10 for their medicines when they come to the hospital, any admission is

completely taken care of and they can stay as long as they want to, we don’t force them to

go back home. And even regarding the food we don’t force them to pay, it’s just how

much they can pay” [Programme implementer]

“When I was sent to Bangalore for a scan, our hospital took care of all the expenses”

[Beneficiary]

4.3.4 Rehabilitation where applicable:

During the preparatory phase for the community mental health programme it was decided

to plan for the rehabilitation after three years of implementing the programme, however it

was decided to start rehabilitation on an experimental basis by providing some of the

beneficiaries with some small activities of jobs. Thus no specific budget was included for

the rehabilitation.

Over few years of managing the programme some of the stakeholders have felt that the

best way of rehabilitation is to get the people back to what they were doing before which

is mostly manual labour for men and household work for women. Few of the

beneficiaries have been rehabilitated but mostly it is counseling the relatives and the

community members to take the beneficiaries for work. The programme implementers

feel that there is question of sustainability with a rehabilitation center and currently there

are no plans to start a center.

45

Of the patients enrolled in the programme about 74 % of the beneficiaries are functional,

going to work and earning a living, 20% are partially functional and 6% are not yet

functional.44

“There was a patient in Elumaram suffering from psychosis, he had stopped going to

work, after medication and he became a little better he dint find work then our Animators

went to the village and spoke to a person and told that this person in fine now and can

work and it will be very helpful for him, then he started working, after some time the

animators helped him to get a loan from government and now he has a small shop. Many

people who suffered from illness are going to estate work and some people are doing

house work.” [Health Animator]

“There was a carpenter whom we tried getting him back to work and we give him some

work to do, there was a guy who was literate and we have made him the village

librarian” [Programme implementer]

“They have given me a cow so I have a lot of work to do” [Beneficiary]

4.3.5 Other findings

The following findings are from the observations during the village visits and in-depth

interviews.

A person was identified during the village visit, with symptoms suggestive of psychiatric

illness for about a year, but was not referred or reviewed by a doctor. The THC had seen

this person wandering on the road several times but did not recognize these symptoms as

an illness thus did not inform the HA. Later on speaking to the THC, the awareness about

mental illness was found to be inadequate.

46

Some of the stakeholders said that not all the members of ACT had good awareness about

mental illness. If they are trained this would lead to early diagnosis of cases and better

functioning of the programme.

Less than half of the stakeholders said that they want to improve their counseling skills.

It was opined that some of the beneficiaries who are old, with severe mental illness are

not getting adequate nutrition due to various reasons. If programme can provide some

nutrition supplements, it would help such beneficiaries.

Majority of the stakeholders said that alcoholism is creating lot of problems among the

community members and this has adverse effects on the beneficiaries.

4.3.6 Strengths and bottlenecks in the programme

4.3.6.1 Strengths

● Community health programme is functioning for more than 20 years, making it

easy for implementation and functioning of the programme.

● Community is directly involved in all the stages of the programme, thus making it

acceptable and sustainable.

● Presence of health volunteers in the villages forming a link between the village

and the larger community.

● Programme coverage is extensive, covering almost all the villages.

4.3.6.2 Bottlenecks

● There is no systematic rehabilitation, thus the programme is not able to

rehabilitate all the needy people.

● Alcoholism is playing a spoilsport and the programme at the moment is not able to

address this issue.

47

4.4 Triangulation

Triangulation was done with quantitative data (crosse sectional survey and secondary

data) qualitative data (in-depth interview and field notes) for the first three programme

objectives (awareness, early detection and continuity of care).

4.4.1Awareness:

Both quantitative and qualitative components indicated good awareness in the community

about mental illness. Though the personal beliefs about the causes of mental illness has

not changed much, people are aware about the symptoms of mental illness and the need to

access health care for the same.

The awareness among the youth and people who have migrated was felt to be inadequate.

4.4.2 Early detection:

The stakeholders said that presence of health volunteers in the villages made a huge

difference in the early detection of cases; patients are being diagnosed much faster. Most

of the cases are being referred by the health animators and health volunteers and there is

an increase in relatives of the beneficiaries and the beneficiaries accessing the health care

directly.

4.4.3 Continuity of care:

All the beneficiaries interviewed said that the health animators visit them regularly and

they have not faced a situation where they needed the medicine and were not able to get

them.

48

Chapter 5 Discussion and conclusion

5.1 Discussion

5.1.1 Cross sectional survey

5.1.1.1 Sample characteristics:

We find that all the sample characteristics were comparable between the intervention and

control area except the education status and tribal groups, which were different from each

other. The education status was found to be higher in the control area. There were four

different tribal groups in the intervention area and two tribal groups in the control area.

5.1.1.2 Distribution of scores by other variables

The awareness score in the intervention area was found to be much higher than the

control area. The mean scores were 5.13 and 1.57and median of 5 and 2 in the

intervention and control areas respectively and it was statistically significant with p value

of <0.001.

The other variables which were found to have significant difference were marital status

and composition of tribal groups with a p value of 0.02 and <0.001 respectively. The

awareness scores were not significantly different from each other with respect to the

variables, age group, sex and education status.

5.1.1.3 Two way anova:

Analysis done using the factorial (2 way) anova showed that the awareness in the

intervention area was significantly higher than the control area when adjusted for age,

sex, marital status, education status and tribal groups. None of the predictor variables

were found to affect the scores, after adjusting for intervention. This indicates that only

49

the intervention by the Community Mental Health programme is the likely cause for

better awareness in the intervention area.

5.1.1.4 Multivariate analysis:

Multivariate analysis showed that the best model could explain 33.1 % of better

awareness in the intervention area when adjusted for variables, sex and marital status. The

variable “intervention / control” was found to be highly significant with a p value of

<0.001and currently married / currently not married was also found to be significant with

a p value of 0.047.

5.1.2 Secondary data analysis:

5.1.2.1 Early detection:

Studies have shown that there are better outcomes with early intervention on psychiatric

illness. 45, 46, 47

From the study we found that the mean and median duration of untreated

illness has been decreasing since the programme has started. This indicates that the cases

are diagnosed and the intervention starts early.

5.1.2.2 Continuity of care / follow-up

The programme has very good follow-up of beneficiaries, about 77.5 % of patients were

followed up for ten or more times in a year. Only 6.7 % of beneficiaries had satisfactory

follow-up of seven to nine times and 15.8% of the beneficiaries had poor follow-up of

zero to six times in a year. Out of the 15.8% poor follow-up beneficiaries, 2.25% were

irregular, 10.15% had dropped out of treatment due to various reasons and 3.4% of the

beneficiaries had migrated. Over all the follow-up of patients is very good in this

programme.

50

5.1.3 Qualitative analysis:

5.1.3.1 Help community take responsibility for mentally ill patients:

A definite change in attitude towards mental illness is seen since the programme has

started. People are having better awareness and have seen the improvements with

mentally ill people after medication; this has resulted in increased community

participation and responsibility in the care of the mentally ill people. Though this is not

the same with all the families, but community participation is slowly increasing in the

positive way.

5.1.3.2 Provide treatment close to home:

Even with the difficult terrain and natural conditions the programme has covered almost

all the tribal villages in the area. The three tier system and the dedicated members of the

programme with the help of the community have ensured availability of treatment at the

grass root level. Extra efforts are taken for people with mental illness and tuberculosis in

delivering services at the village level.

5.1.3.3 Give economic support during hospitalization:

The programme supported the beneficiaries and their bystanders to reduce the expenses

during any adverse events making it convenient for the beneficiaries and their families to

access health care. Currently the programme with the support of TNHSP and other

funding organizations is able to subsidize the costs of medicine, provide free hospital

admissions and referrals to the beneficiaries of the programme.

51

5.1.3.4 Rehabilitation where applicable:

On the rehabilitation front the programme has achieved what was planned for. Though

rehabilitation has not been done for all the beneficiaries, in situations where rehabilitation

was feasible the programme has addressed the issue. There is a question of acceptability

and sustainability of a rehabilitation center which needs to be studied further.

5.1.4 Triangulation

Through triangulation we found that the data from the quantitative and qualitative aspects

of the study are consistent with each other. It was also learnt from the qualitative data that

the youth in the community seen not to have good awareness about mental illness.

5.2 Strengths and limitations of the study

5.2.1 Strengths

● This is the first systematic study done at the end of six years of programme

implementation.

● Control area is being targeted for expansion of the programme and the findings

from this study will be utilized in the expansion phase.

5.2.2 Limitations of the study

● Secondary data has been used in the evaluation of the programme thus there is a

question of reliability of the data.

● Economic costing of the programme was not done.

● The study did not look at the outcomes of the beneficiaries.

52

5.3 Recommendations

This study was done to find whether the programme has been able to achieve its

objectives, to see if this model is feasible for replication and to give some suggestions.

The recommendations this study would like to make are as follows:

● Refresher training for HA, HG and doctors to improve the counseling skills.

● Train the THC and ACT about mental illness.

● Conduct more awareness programmes and specifically targeting the youth of the

community.

● Provide nutritional supplements to the needy beneficiaries.

● Expand the programme in control area.

5.4 Conclusions

The programme has been successful in integrating the community mental health

programme with the primary health care and has progressed to a desired level in

achieving the objectives set forth. This model is viable and can be replicated successfully

in comparable settings.

I

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II

14. Ganguli HC. Epidemiological findings on prevalence of mental disorders in India.

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32. Chatterjee S, Patel V, Chatterjee A, Weiss HA. Evaluation of a community-based

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IV

44. Report - Association for Health Welfare In the Nilgiris. Addressing the hidden

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Adivasi Community Mental Health programme. Gudalur: ASHWINI; 2009.

45. Yap HL. Early psychosis intervention. Singapore Med J. 2010; 5: 689-93.

46. Saravanan B, Jacob KS, Johnson S, Prince M, Bhugra D, David AS. Outcome of

first-episode schizophrenia in India: longitudinal study of effect of insight and

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V

Appendix-I

Informed consent –Community members

I am Dr. Mahantu Yalsangi, a post graduate student in Public Health from Achutha Menon Centre

for Health Science Studies, Sree Chitra Tirunal Institute for Medical Sciences and Technology,

Thiruvananthapuram. As part of my course, I am conducting a study titled “Evaluation of a

community mental health programme in a Tribal area – south India”, under the guidance of

Prof (Dr.) V.Raman Kutty. I want to study how the programme is running and specifically to

look whether the programme has been able to achieve what was planned before beginning of the

programme and to get your opinion about the mental illness and functioning of the programme. I

would like to ask you some questions related to this study which will take about 20 minutes.

There is no direct benefit for you from the study but your cooperation will help us assess and also

to improve the programme.

The information given by you will be used for research purposes only. It will not be disclosed to

anyone under any circumstances, anywhere, at any time and will be kept confidential. You are

free to withdraw from the interview at any point of time. Also you can refuse to answer any

question that you are not comfortable with. If you choose not to take part or to stop at any time, it

will not affect any of the services you are receiving.

If you have any queries or doubt please feel free to clarify those. I will answer your queries right

now or in future to the best of my abilities. My contact number is 9037137759/9626748741. In

case you need any clarifications about my credentials or the study you can contact Dr.

Ramankutty, Professor, AMCHSS (0471-2524240), SCTIMST, Thiruvananthapuram-695011. or

Dr. Anoop Kumar Thekkuveettil, Member-Secretary of the Institutional Ethical Committee at

SCTIMST, Thiruvananthapuram (0471-2348394).

Are you willing to take part in the study?

Yes No

If you are not willing to take part thank you for your time.

VI

Witness:

Dr Mahantu Yalsangi has explained all the details of the study and

Mr./Ms./Mrs._________________________________has expressed willingness to take part in

the study in my presence.

Signature of the witness: ______________________

Signature of the investigator: ________________________

Time: Date: Place:

VII

Appendix-II

Informed consent-In-depth interview

I am Dr. Mahantu Yalsangi, a post graduate student in Public Health from Achutha Menon Centre

for Health Science Studies, Sree Chitra Tirunal Institute for Medical Sciences and Technology,

Thiruvananthapuram. As part of my course, I am conducting a study titled “Evaluation of a

community mental health programme in a Tribal area – south India”, under the guidance of

Prof (Dr.) V.Raman Kutty. I want to study the functioning of the programme and specifically to

look whether the programme has been able to achieve what was planned before beginning of the

programme and to get your ideas and suggestions towards the programme. I would like to ask you

some questions related to this study which will take about 1 hour.

There is no direct benefit for you from the study but your cooperation will help us assess and also

to improve the programme.

The information given by you will be used for research purposes only. It will not be disclosed to

anyone under any circumstances, anywhere, at any time and will be kept confidential. You are

free to withdraw from the interview at any point of time. Also you can refuse to answer any

question that you are not comfortable with. If you choose not to take part or to stop at any time, it

will not affect any of the services you are receiving.

If you have any queries or doubt please feel free to clarify those. I will answer your queries right

now or in future to the best of my abilities. My contact number is 9037137759/9626748741. In

case you need any clarifications about my credentials or the study you can contact Dr.

Ramankutty, Professor, AMCHSS (0471-2524240), SCTIMST, Thiruvananthapuram-695011. or

Dr. Anoop Kumar Thekkuveettil, Member-Secretary of the Institutional Ethical Committee at

SCTIMST, Thiruvananthapuram (0471-2348394).

Are you willing to take part in the study?

Yes No

If you are not willing to take part thank you for your time.

VIII

Informed Consent

I, ..................................................................................................... have been explained the

details of the study and I understand the purpose of the study. By signing/giving thumb

impression on this form I give my free and informed consent to participate in this study.

.............................................

......

..............................................

.......

.............................................

......

Signature/thumb

impression of the

participant

Name Date

IX

Appendix-III

Interview schedule

1. Id No: 2. Date:

3. Name: 4. Age:

5. Sex: 6. Tribe: 7. Village:

8. Marital status:

Never married Married Separated Widowed/r

9. Education:

Never attended school Up to 5th

standard

Up to 10th

standard More than 10th

standard

10. A person is talking to himself very often and simply runs away into the forest.

a. This person is suffering from mental illness.

Agree Unsure/Don‟t know Disagree

11. A person is not going to work from past two months, sitting at home, is very sad, and is

not talking to anyone.

a. This person is suffering from mental illness.

Agree Unsure/Don‟t know Disagree

12. A person is excessively suspicious of people around him, even with his family members.

a. This person is suffering from mental illness.

Agree Unsure/Don‟t know Disagree

13. A person has told people that she wants to die and she is having suicidal thoughts from

past two months.

a. This person is suffering from mental illness

Agree Unsure/Don‟t know Disagree

14. Going only to a mantravadi is sufficient to treat mental illness.

Agree Unsure/Don‟t know Disagree

2 3 4 1

1 2

3 4

1 2 3

1 2 3

1 2 3

1 2 3

1 2 3

X

15. A person who is treated for mental illness can lead a normal life.

Agree Unsure/Don‟t know Disagree

16. Mental illness can be cured with English medicines.

Agree Unsure/Don‟t know Disagree

17. Mental illness is a punishment by god for doing some bad things.

Agree Unsure/Don‟t know Disagree

18. Performing black magic on a person can cause mental illness.

Agree Unsure/Don‟t know Disagree

1 2 3

1 2 3

1 2 3

1 2 3

XI

Appendix-IV

Interview guidelines – Beneficiary

1. Id No: ____________ Date of Interview:________________

2. Name of the Informant:____________________ Age of the informant:_______

3. Sex: ______ Tribe:______ Village:________________________________

4. Marital status:

a. Never married b. Married c. Separated d. Widowed/r

5. Education:

a. Never attended school b. Up to 5th

standard

c. Up to 10th

standard d. More than 10th

standard

Detailed description of events from the beginning of illness till now.

Can you briefly tell me about how your illness started? What treatment did you take? What

treatment are you taking now? How are you feeling now?

What sort of work were you doing before you fell ill? Are you going to work now? If yes what

sort of work? Did anyone support or help you to get back to your work/find employment.

During the course of treatment did you take medicines regularly? Did people remind you about

taking medication? Who helped you when you were ill? Did anybody other than your family help

you in any way during your illness? If yes how?

What did you do when your medicines were over? Do you go to the area centre or hospital or any

other place to get a check up or did health staff come to your village to see you? Were there any

period when you wanted to take medication but could not? If so what are the reasons?

Are there any concession or benefits you received from the organization? If yes can you give

details?

Are you happy with the treatment and services that you are receiving or received?

I am specifically looking at ways to improve the programme. If you can discuss certain problems

in the programme that you may or may not have faced and how we can improve it, we can make

the programme better.

XII

Appendix-V

Interview guidelines – Health Guide

1. Id No: ____________ Date of Interview:________________

2. Name of the Informant:_____________________Age of the informant:_______

3. Sex: ______ Tribe:______ Village:________________________________

4. Education:

a. Never attended school b. Up to 5th

standard

c. Up to 10th

standard d. More than 10th

standard

How long have you been a health volunteer and involved in the community mental health

programme?

Please tell me briefly about your activities in community mental health programme.

Are there any differences that you have seen among the people‟s attitude towards mental illness

and mentally ill people since you have started work here till now? If so what are the differences?

What does the community think are the causes of mental illness? Do you see any change in

people‟s ideas about these causes over the past few years? What are the changes that you see?

Are the community / relatives taking up responsibility of caring for the mentally ill patients? Was

the situation any different few years ago?

What are the kinds of problems that you think the mentally ill or the community people face?

One of the major problems in treatment of mental illness is drop out /discontinuation of treatment.

Has the programme addressed this issue? If yes how? Do you see any change now? If yes what

are the changes?

Another major issue is non availability of treatment at a nearby place or people have to travel a

long distance to access treatment. Do you see any problems as these in your community? What do

you think the programme has been able to do on this front?

Do you get any support in your activities? Who all support you?

Has the beneficiary or family of the beneficiary received any sort of benefit? Has the programme

helped them reduce their expenses in any way?

It may be difficult for mentally ill patients to earn a living or become part of society. Has there

been any attempt to rehabilitate them? If yes who initiated the rehabilitation? Can you give some

examples?

I am specifically looking at ways to improve the programme. Based on your experience of the

programme, have you attempted to resolve some of the problems faced? If so, how did you do

this? Are there any suggestions or ideas that you would like to bring out to improve the

programme? If yes what are they?

XIII

Appendix-VI

Interview guidelines – Health Animator 1. Id No: ____________ Date of Interview:________________

2. Name of the Informant:________________Age of the informant:_______

3. Sex: ______Tribe:______ Village/Area:________________________________

4. Education:

a. Never attended school b. Up to 5th

standard

c. Up to 10th

standard d. More than 10th

standard

How long have you been working as a Health worker.

Please tell me briefly about your activities in community mental health programme.

Are there any differences that you have seen among the people‟s attitude towards mental illness

and mentally ill people since you have started work here till now? If so what are the differences?

What does the community think are the causes of mental illness? Do you see any change over the

past few years? What are the changes that you see?

Are the community / relatives taking up responsibility of caring for the mentally ill patients? Was

the situation any different few years ago?

What are the kinds of problems that you think the mentally ill are facing?

One of the major problems in treatment of mental illness is drop out /discontinuation of treatment.

Has the programme addressed this issue? If yes how? Do you see any change now? If yes what

are the changes?

Another major issue is non availability of treatment at a nearby place or people have to travel a

long distance to access treatment. Do you see any problems as these in your community? What do

you think the programme has been able to do on this front?

Do you get any support in your activities? Who all support you?

Has the beneficiary or family of the beneficiary received any sort of benefit? Has the programme

helped them reduce their expenses in any way?

It may be difficult for mentally ill patients to earn a living or become part of society. Has there

been any attempt to rehabilitate them? If yes who initiated the rehabilitation? Can you give some

examples?

I am specifically looking at ways to improve the programme. Based on your experience of the

programme, have you attempted to resolve some of the problems faced? If so, how did you do

this? Are here any suggestions or ideas that you would like to bring out to improve the

programme? If yes what are they?

XIV

Appendix-VI

Interview guidelines – Programme implementers

1. Id No: ____________ Date of Interview:________________

2. Name of the Informant:_____________________Age of the informant:_______

3. Sex: ______

When was the community mental health programme started? What were the reasons to start the

programme?

What were the difficulties that you faced during the Implementation of the programme? How did

you overcome them?

What were the strengths or advantages for the implementation of the programme?

What is your opinion on the awareness level of mental illness in the community? Is there a change

since the programme has started? What are the changes that you see?

Do you see an increase in people accessing mental health care?

Is there an increase in the referrals? Are these referrals being made by the health volunteers and

the health workers? Are people accessing the hospital without any referral?

Are there any concession or benefits that are being provided to the beneficiaries? What are they?

How does the programme address rehabilitation of the beneficiaries?

If you had to start the community mental health programme all over again. What would you do

differently?

Are there any specific factors that have helped in the implementation of the programme? Will the

same factors work anywhere else? If not what is different?

Are there any specific future plans regarding the community mental health programme? If yes

what are they?