National Mental Health Survey

National Mental Health Survey 2 in India Supported by the Ministry of Health and Family Welfare, Government of India

OPERATIONAL GUIDELINES

A step-by-step guide for conduct of NMHS 2

March – April 2024 VERSION: 01NOV2024

This Operational Guidelines document has been prepared to support and facilitate smooth conduct of NMHS 2 across States / UTs of India.

This document has to be used by respective State / UT teams and not to be circulated.

For further details and any queries, please contact

Dr Pratima Murthy, Director, NIMHANS Dr Vivek Benegal, Professor of Psychiatry Dr Girish N Rao, Professor of Epidemiology Dr TS Jaisoorya, Professor of Psychiatry

National Mental Health Survey of India,

5th Floor, Lecture Hall 2, Dr M V Govindaswamy Centre, NIMHANS, Bangalore – 560029

Email: nmhs@nimhans.ac.in; nmhs2cen@nimhans.net

Contents

Section A

1. The National Mental Health Survey

2. Project management

1. At the National level

2. At NIMHANS level

3. At State level

1. NMHS State Team (NST)

2. NMHS State Advisory Board (NSAB)

3. NIMHANS – NMHS State Support Team (NNSST)

4. NMHS State Data-Collection Team (NSDT)

3. Study instruments

1. Cluster Details

2. Screening for symptoms of others from head of household

3. Socio-demographic Form

4. Physical Illness & COVID-19 Screening

5. WHO-5 Well-being Index Questionnaire

6. Screening for Premenstrual Dysphoric Disorder & Peri-Menopausal Syndrome

(Women)

7. Screening for Neurocognitive Disorders

8. Loneliness Scale

9. Flexible Interview for ICD-11 (FLII-11-Adult/Adolescent)

10. NMHS-2DisabilityScale(ForthosewhoscreenpositiveonFLII-11)

11. HealthTreatmentandCareQuestionnaire(ForthosewhoscreenpositiveonFLII- 11)

12. Barriers to Service Utilization (For those who screen positive on FLII-11)

13. Questions to assess individual stigma (For those who screen positive on FLII-11)

14. Screeningforepilepsy

15. Checklist of Parental Concerns

4. Training for study teams to conduct NMHS

1. Preparation for training

2. The training processes

3. Schema of training in different stages

4. Overview of training

5. The training schedule

1. Week 1 [day 1 – 3]: Orientation and sensitisation to NMHS

2. Week 2 [day 4 – 16]: Observation and discussion

3. Week 3 [day 17 – 21]: Demonstration and administering NMHS instruments

4. Week 4 [day 22 – 28]: Observation and Discussion of Special Modules

5. Week 5 [day 29 – 31]: Gaining proficiency in interviews

6. Week 6 [day 32 – 38]: Training in the community

7. Week 6 [day 39-42]: Microplanning, Monitoring and Supervision

6. Certifying the training of the FDCs

1. Training related evaluation

2. Post training evaluation

7. Sampling methodology

8. Sample size

9. Sampling design

10. Preparatory activity at survey districts

11. Preparatory activity at survey sub-district level

12. Locating households for survey

1. Selection of households

2. Numbering of the HH

13. Selection of respondents

14. Organizing logistics for data collection

15. Doing data collection

1. Data collection steps

2. Conducting an interview

3. Building rapport with the respondent

4. Tips in conducting the interview

5. Completing survey in the cluster

6. Safe keeping of data

7. Data Storage by the FDCs

8. Data Storage by study co-ordinator

9. Data Storage by the NMHS State / UT team

10. Data transfer

16. Record keeping

1. Field Data Collectors

2. FDC supervisor / study coordinator

17. Monitoring mechanisms

18. Monitoring progress for data collection activities

1. Field level

1. Daily monitoring

2. Weekly monitoring

3. Supervisory field visits

4. Monthly review meetings

2. Re-interviews

3. State level

4. Central level

1. Reporting progress

19. Ethical issues

20. Financing issues

21. Dissemination and publication policy

AV Aids CDB

CEB CIDI CMD Co-PI DALYs DHO DCMO DIS DSM FDC FLII-11 FSU GHQ GTCS HH

IC ICD

ID IPSS MHSA MNS MoHFW NCDs

NCMH

NGO NIMHANS NKN NMHS

NNSST

NSAB NSDCT NST N-TAG OCD OPD PAPI

Abbreviations used

Audio-visual Aids

Community Development Blocks

Census Enumeration Block

Composite International Diagnostic Interview Common Mental Health Disorders

Co- Principal Investigator

Disability Adjusted Life Years

District Health Officer

Deputy Chief Medical Officer

Diagnostic Interview Schedule

Diagnostic and Statistical Manual

Field Data Collectors

Flexible Interview for ICD-11

Final Sampling Unit

General Health Questionnaire

Generalized Tonic-Clonic Seizures

Household

Informed Consent

International Classification of Diseases

Intellectual Disability

Indian Psychiatric Survey Schedule

Mental Health Systems Assessment

Mental, Neurological and Substance related disorders Ministry Of Health and Family Welfare

Non Communicable Diseases

National Commission on Macroeconomics and Health

Non-Governmental Organization

National Institute of Mental Health and Neuro Sciences National Knowledge Network

National Mental Health Survey

NIMHANS – NMHS State Support Team

NMHS State Advisory Board NMHS State Data-collection Team NMHS State Team

National Technical Advisory Group Obsessive Compulsive Disorder Out Patient Department

Paper and Pencil Instrument

PI PPS PRIME-MD PSE 9 PSU PTSD SADS SCAN SCID SDDS-PC SDI SMD SRQ SSU

WHO WMH-CIDI

WHO YLD

Principal Investigator

Probability Proportional to Size (wrt. Sampling)

Primary Care Evaluation of Mental Disorders

Present State Examination – 9th revision

Primary Sampling Unit

Post Traumatic Stress Disorder

Schedule for Affective Disorders and Schizophrenia

Schedules for Clinical Assessment in Neuropsychiatry

Structured Clinical Interview for DSM Disorders

Symptom-Driven Diagnostic System for Primary Care

Socio- Demographic Information

Severe Mental Health Disorders

Self-Report Questionnaire

Secondary Sampling Unit

World Health Organization World Mental Health Composite International Diagnostic Interview

World Health Organization Years Lived with Disability

Dr. Pratima Murthy.

NMHS-2 NIMHANS Team

Director and Senior Professor of Psychiatry

Principal Investigators

1. Dr. Girish N Rao. Professor of Epidemiology,

2. Dr.Vivek Benegal. Professor and Head of Psychiatry,

3. Dr. Jaisoorya. T. S. Professor of Psychiatry

Co- Principal Investigators

1. Dr. K. Thennarasu. Professor of Biostatistics

2. Dr. K. John Vijay Sagar. Professor and Head of Child and Adolescent Psychiatry

3. Dr. Arun K. Professor and Head of Centre for Addiction Medicine

Principal Advisors

1. Dr. G. Gururaj. Formerly, Director, Dean of Neuro sciences, and Sr. Professor

of Epidemiology, NIMHANS

2. Dr. Mathew Varghese. Formerly. Sr. Professor of Psychiatry, NIMHANS

Co- Investigators

1. Dr. P. Marimuthu. Professor and Head of Biostatistics

2. Dr. Jamuna Rajeswaran. Professor & Head of Clinical Psychology

3. Dr. Senthil Amudhan R. Professor & Head of Epidemiology

4. Dr. B.P. Nirmala. Professor and Head of Psychiatric Social Work

5. Dr. Arun.K. Professor and Head of Centre for Addiction Medicine (CAM)

6. Dr. K.S. Meena. Professor & Head of Mental Health Education

7. Dr.Seema Mehrotra. Professor of Clinical Psychology

8. Dr. Pradeep. B.S. Professor of Epidemiology

9. Dr. Thirumoorthi. Professor of Psychiatric Social Work

10. Dr. Janardhana. Professor of Psychiatric Social Work

11. Dr. R. Dhanasekara Pandian. Professor of Psychiatric Social Work

12. Dr. M.N. Vranda. Professor of Psychiatric Social Work

13. Dr. Y. C. Janardhan Reddy. Professor of Psychiatry

14. Dr. Naveen Kumar. C. Professor of Psychiatry

15. Dr. Suresh Bada Math. Professor of Psychiatry

16. Dr. Mariamma Philip. Additional Professor of Biostatistics

17. Dr. Binu Kumar. Additional Professor of Biostatistics

18. Dr. Nitin Anand. Additional Professor of Clinical Psychology

19. Dr. Jyotsna Agarwal. Additional Professor of Clinical Psychology

20. Dr. Aruna Rose Mary Kapane. Additional Professor of Clinical Psychology

21. Dr. Gautham. M. S. Additional Professor of Epidemiology

22. Dr. Aravind. B. A. Additional Professor of Epidemiology

23. Dr. Anish V Cherian. Additional Professor of Psychiatric Social Work

24. Dr. E. Aravind Raj. Additional Professor of Psychiatric Social Work

25. Dr. Kanmani. T.R. Additional Professor of Psychiatric Social Work

26. Dr. Sojan Antony. Additional Professor of Psychiatric Social Work

27. Dr. Gobinda Majhi. Additional Professor of Psychiatric Social Work

28. Dr. N. Manjunatha. Additional Professor of Psychiatry

29. Dr. Hareesh Angothu. Additional Professor of Psychiatry

30. Dr. Ajit B Dahale. Additional Professor of Psychiatry

31. Dr. Binu. V. S. Associate Professor of Biostatistics

4. Dr. Eesha Sharma. Associate Professor of Child and Adolescent Psychiatry

32. Dr. Rajendra. K.M. Associate Professor of Child and Adolescent Psychiatry

33. Dr. Ajay Kumar. Associate Professor of Clinical Psychology

34. Dr. Gitanjali Narayanan. Associate Professor of Clinical Psychology

35. Dr. Pracheth.R. Associate Professor of Epidemiology

36. Dr. K. Janaki Raman. Associate Professor of Psychiatric Social Work

37. Dr. Shanivaram Reddy. K. Associate Professor of Psychiatric Social Work

38. Dr. L. Ponnuchamy. Associate Professor of Psychiatric Social Work

39. Dr. Chethan. B. Associate Professor of Psychiatry

40. Dr. Guru S. Gowda. Associate Professor of Psychiatry

41. Dr. Latha. K. Associate Professor of Mental Health Education

42. Dr. Ravi. G.S. Assistant Professor of Biostatistics

43. Dr. Harshini. M. Assistant Professor of Child and Adolescent Psychiatry

44. Dr. Lakshmi Sravanti Tanuku. Assistant Professor of Child and Adolescent

Psychiatry

45. Dr.Tony Lazar Thomas. Assistant Professor of Child and Adolescent Psychiatry

46. Dr. Rajesh Kumar. Assistant Professor of Clinical Psychology

47. Dr. Narendra Nath. S. Assistant Professor of Clinical Psychology

48. Dr. Shreedevi. A.U. Assistant Professor of Psychiatric Social Work

49. Dr. Preethi Sinha. Professor Geriatric Consultant

50. Dr. Narasimha. Assistant Professor of Psychiatry

51. Dr. Deepak S. Ghadigaonkar. Assistant Professor of Psychiatry

52. Dr. Preethi V Reddy. Assistant Professor of Psychiatry

53. Dr. Dinakaran. Assistant Professor of Psychiatry

54. Dr. Srinivas. B. Assistant Professor of Psychiatry

55. Dr. Rajini. P. Deputy Director (Mental Health)

56. Dr. Kumar. Programme Officer (Mental Health)

57. Dr. Chetan. K. S. Psychiatrist (DMHP) Bengaluru Urban

NIMHANS Central Co-ordination Team as on 01 Nov 2024

1. Dr. Lakshmi Joji Programme Co-ordinator (Psychiatry)

2. Dr. Varsha Udupa. Programme Co-ordinator (Psychiatry)

3. Dr. Vrunda Patel Programme Co-ordinator (Psychiatry)

4. Dr. Manjunath D P Senior Survey Coordinator

5. Mr. Sannu Kumar Singh Project Coordinator (State / UT)

6. Ms. Sherine James Project Coordinator (State / UT)

7. Mr. D G Ashish Project Coordinator (State / UT)

8. Mr. Vishak Project Coordinator (State / UT)

9. Mr. A Robinson Silvester Senior I T Program lead

10. Ms. Shansa IT Programmer

NMHS-2 Partner Institutions

How to use this document

This document should be read in conjunction with the Master Protocol of the National Mental Health Survey 2 (NMHS 2).

The NMHS Master Protocol outlines various components of “What is being done”, while the Operational Guidelines document informs “How to do” steps. All members of the NMHS team, both at center and State / UT level, need to read through, understand the different components of this survey and familiarize with all steps. In addition, it needs to be referred often to ensure that appropriate steps are being followed during implementation of the survey. The document is structured in a manner which will facilitate this process of frequent referral. In addition, there is ample margin space which will help make notes.

The document is divided into 2 sections: Section A includes the concepts and related issues for the conduct of NMHS; Section B gives the detailed steps for conduct of the individual steps in the survey, guidelines for conducting the survey, a schema for training, technique of interviewing, monitoring mechanism, planning logistics and micro-planning for survey (NMHS 2) and Mental Health Systems Assessment (MHSA).

SECTION A

1.0 THE NATIONAL MENTAL HEALTH SURVEY

Mental health problems are a major burden in the country. In the past, Government of India has taken a number of initiatives to improve mental health care availability, accessibility and affordability. Recently, mental and neurological disorders have been included under the broader rubric of Non-Communicable Diseases (NCDs) to aid implementation of programmes in an integrated manner.

Good quality data is needed to plan and implement effective and efficient mental health care programmes. As the number of people affected with MNS disorders in India is not clearly known, difficulties are experienced to develop and implement need based mental health programmes and services in the country.

National Institute of Mental Health and Neuro Sciences (NIMHANS), Bengaluru was entrusted with the responsibility to develop the methodology, coordinate and implement the National Mental Health Survey (NMHS). The National Mental Health Survey protocol overcomes several methodological limitations of the earlier surveys and formed the template for the NMHS-1. Advancing on the experience of the NMHS-1, the Government of India has directed NIMHANS to conduct the survey in all the states and union territories (National Mental Health Survey-2 (NMHS-2). The aim is to generate national and state level estimates of any mental health morbidity and provide information to plan and develop mental health services in the country. The detailed proposal is laid out in the Master Protocol document.

The specific tasks for the NMHS-2 are

1. Validate the primary instrument of assessment for mental health morbidity – Flexible Interview for ICD-11 (FLII)

2. Generate burden estimates for State / UT and pooled national estimates of priority mental health problems in a representative population

· aged 18 years and above

· adolescents (13-17 years)

· children (aged 6-12 years)

3. Identify the disability, socio-economic impact, Family and carer burden, pathways to care and service utilization pattern

4. Characterize mental disorders / illness with respect to vulnerable and / or special populations

5. Conduct Health System Assessment and Resource mapping for Mental Health Care

6. Undertake an evaluation of the District Mental Health Program

7. Estimate the number of patients and the broad diagnostic categories of mental health disorders seen by practicing psychiatrists/DMHP program/Government mental health centers across the country in a typical working day

8. Plan and conduct thematic studies with respect to Mental Health Care and Services

9. Participate in scientific dissemination of data / information generated under NMHS2

2.0 Project Management

Implementation of a population-based door to door survey regarding mental health is a huge challenge, which demands the resources of a multi-disciplinary team with the right mix of experience and expertise. The NMHS thus has formulated different teams to ensure successful implementation and completion of the national survey.

2.1 At the National level

The project is guided by the National Technical Advisory Group (N-TAG) comprising of persons of eminence drawn from different domains related to the conduct of the study like mental health, bio-statistics, survey methodology and social sciences. The NTAG has the overall responsibilities of providing directions for undertaking the nationwide survey, improving quality, monitoring progress and providing timely approvals for the project.

The NTAG is chaired by Jt. Secy (PH) MoHFW and Director – NIMHANS is the Member Secretary.

2.2 At NIMHANS level

2.2.1 The NMHS 2 NIMHANS Steering Committee, consisting of the Deans and Associate Deans of Behaviour Sciences, Neuro Sciences and Basic Sciences along with the Heads of the Departments of Psychiatry, Biostatistics, Clinical Psychology, Psychiatric Social Work and Epidemiology meet periodically to review completed and ongoing activities, provide suggestions and help in improving overall progress of the project.

2.2.2 At NIMHANS, based on the instructions of Director, NIMHANS, NMHS 2 is coordinated by a Core team (referred to as the Central Team) who are involved in day-to-day management of the project. This team has the overall responsibilities of project implementation and works with all other teams and leads the project in all aspects of preparation – coordination – management – financing – supervising – monitoring and other related activities. The team comprises of Faculty and also staff who are hired on a contractual basis.

2.3 At State Level

Four different sets of teams are constituted at the state level for implementation of the National Mental Health Survey. These are

1. NMHS State Team (NST)

2. NMHS State Advisory Committee (NSAC)

3. NMHS State Data-collection Team (NSDT)

4. NIMHANS – NMHS State Support Team (NNSST)

2.3.1 NMHS State Team (NST)/

The NMHS team in each state (NST) has 3 to 4 investigators or more depending on the need. The team comprises of a mix of a mental health professionals (psychiatrists, social work professionals and psychologist) and public health or community medicine / family medicine personnel.

The team is led by the Principal Investigators as designated by the Head of the Institution. The Psychiatrist and counterpart from Public Health / Community Medicine are the Principal Investigators. Thus, the two Principal Investigators (PIs) are solely responsible for all the activities related to the conduct of NMHS 2 in the respective State / UT and would administratively sign-off for NMHS 2.

The two Principal Investigators are supported by their colleagues / fellow professionals as Co-Principal Investigators or Co-Investigators, who share the burden of work regarding one or more technical components of the survey. Adding Co-investigators as part of the state team depends on local circumstances and may represent mental health professionals, public health / community medicine professional, health administrators or bio- statistician, faculty / staff from local medical colleges.

It may be noted that as per Government of India norms, the designation of any type of Investigator (Principal, Co-Principal and Co-Investigator) is honorary and s/he is not entitled to any additional salary or emoluments. Incidental expenses related to travel; local stay and refreshments are defrayed as per norms indicated in the budget.

The roles and responsibilities of the NMHS state team are to work in close collaboration with NIMHANS team and

1. Obtain necessary approvals including Institutional Ethics Committee (IEC) approval and permissions for the conduct of NMHS in the respective State / UT

2. Participate in review of translation or translation and other activities of NMHS

3. Implement the survey as per the Master Protocol

4. Constitute the NMHS State Advisory Board, which would facilitate the conduct of

NMHS in the State/ UT

5. Appoint, train and re-train Field Data Collectors (FDC) and supervise data collection

activities as per Operational Guidelines

6. Maintain high ethical standards during the conduct of survey, ensure quality control

in data collection activities and undertake re-interviews on a 5% subsample as per

the Operational Guidelines

7. Ensure timely and secured transmission of data

8. Undertake study of Mental Health Systems Assessment (MHSA), Resource mapping and DMHP evaluation as per the master protocol

9. Conduct and participate in periodical review meetings and submit monthly reports and expenditure statement

10. Draft the state levels reports and fact sheets, contribute to developing the national report and undertake local dissemination of results

2.3.2 NMHS State Advisory Committee (NSAC)

The NSAC consists of 5 to 7 members including the representative from the State Health Services (Director or his nominee), Member-Secretary State Mental Health Authority, State mental health programme officer, psychiatrist and community health professionals (part of

the study team), a NGO representative, etc.,. The PI of the study would be the Convenors of the Board and the senior most functionary desirably the Head of the Community Medicine / Public Health can be made as the Chairperson.

The NSAC facilitates the conduct of the NMHS in the respective State / UT by guiding and advising the NST regarding different aspects of the survey. They also function as the peer review and support system by reviewing the Mental Health Systems Assessment (District and State) filled up formats, the draft state report, fact sheets, etc.,.

The NSAC will meet as frequently as desired by the NST and at-least on three occasions (prior to the start of the survey, midway through the survey and before submission of the state report) during the period of study in the respective State / UT.

2.3.3 NIMHANS – NMHS State support team (NNSST)

The state team will be supported by the NIMHANS team comprising of one or more members designated from the Departments of Psychiatry, Clinical Psychology, Psychiatric Social Work and Epidemiology and would participate in State / UT level activities. The roles and responsibilities are indicated below.

1. Plan, participate, support and conduct training in use of NMHS study instruments including FLII

2. Assist in Micro-planning the survey

3. Assist to train survey teams in data collection and interview techniques

4. Participate in routine monitoring of survey work at NIMHANS and at the state level

through periodical meetings, VC meetings and during planned state visits

5. Ensure quality control in interviews in the field through sample checks and undertake

supervisory field visits

6. Ensure timely flow of data by coordinating with state teams

7. Trouble shoot survey related problems in consultation with the state team

8. Participate in the conduct of the Mental Health System Assessment at the state level

9. Assist in administrative formalities

10. Data management and reporting

The names and contact details of State / UT support teams with respect to individual states is

given separately as Annexure. This team includes the NMHS 2 State level Resource Persons for Training. The details are given in the section on Training.

2.3.4 NMHS State Data Collection Team (NSDCT)

The NSDCT consists of the Field Data Collectors (FDC) and is led by the study co- ordinator, who is also the FDC supervisor.

The study co-ordinator, in addition to being involved in data collection and coordinating the survey activities in the field, will also liaison between the NMHS state team and data collection team.

The roles and responsibilities of NSDCT includes

1. Understanding the survey methodology in detail

2. Undergoing training for 6 weeks in the use of all instruments as per the OG

3. Being ready with the survey plan

4. Conduct the survey as per training

5. Ensure quality in data collection

6. Check for completeness of data collected

7. Maintain daily log book, monitoring formats and summary of survey activities

8. Ensure data transmission as specified

Selection of Data Collection Team

The selection of the NSDCT should be in consonance with the routine practices of the institution responsible for conducting the survey. It is desirable to advertise for the posts on the institution webpage and schedule interviews.

The basic qualification for all FDC would be Nursing graduates or Masters in Psychology / Social work /Public Health or related areas (PLEASE ENSURE THAT THE FDC have a working knowledge of MENTAL HEALTH issues and concerns preferably as course work); please ensure that the qualifications of the FDCs are communicated and discussed with the central team at NIMHANS.

Ability to communicate (read/speak) in the State / UT’s official language(s) is mandatory.

It is desirable that the NMHS Field Data Collector should have experience in participating in health / mental health related surveys or working in projects / programmes and involved in field level data collection. Candidates with skills in planning field data collection, ability to liaison with different stakeholders, ability to communicate in other local languages and dialects to be preferred.

The candidate for the post of study co-ordinator must have experience in working in projects / programmes as a field staff and involved in field level data collection. Experience in conducting / participating in health-related surveys along-with skills in planning and supervising field data collection, ability to liaison with different stakeholders and communicate in local languages and dialects would be desirable. Most importantly, he / she should have the abilities to provide field guidance, have team building and leadership skills, and good day to day coordinating abilities.

The specific responsibilities of the Study Co-ordinator and the Field Data Collectors are shown below in the table

Study coordinator

1. Planning for field data collection on a week-to-week basis.

2. Undertake data collection in the field

3. Monitor data collection on a daily basis and maintain status logs of survey activity

4. Monitor the progress of the survey, supervise field activities and liaison with local authorities

5. Checking data representation with diagnosis initially for the first two weeks and subsequently every fortnight

6. Prepare daily, weekly and monthly reports as per specified formats

7. Do data checking/ editing for completeness

8. Other responsibilities as may be assigned from time to time by the PI and Co-PI

9. Follow ethical practices

Field Data Collector

1. Planning for field data collection and liaison with local authorities for data collection

2. Undertake data collection in the field as per the plan

3. Ensure data backup on a daily basis regularly

4. Prepare daily and weekly reports and maintain records as per specified formats

5. Other responsibilities as may be assigned from time to time

6. Follow ethical practices

The survey involves data collection in three or more districts which are spread across the state. Hence, selected candidates should be willing to travel extensively to survey sites and also stay within the districts. It is desirable that local people from within the state are recruited in preference. Other desirable attributes of the candidates are willingness for flexible working hours and possessing good inter-personal communication skills

Before starting the conduct of NMHS in the state

● Make sure that you have a latest version of the – Master Protocol and OG document

● Read through the documents to get a complete mastery of the activities

● Understand the study instruments

● Obtain permission from all relevant authorities

● Obtain local ethics approval

● Constitute the NMHS State Advisory Board

● Designate roles and responsibilities for individual members of NST

● Nominate 1 or 2 faculty both in psychiatry & community medicine for day to day coordination

● Identify the field team for data collection

● Develop a training calendar

● Develop a calendar for regular review

● Ensure that you have received the requisite number of tablets, all tablets are in working condition, have the correct software loaded and needed accessories are available. Ensure that the training related data is completely deleted on the tablet. Check data entry and diagnostic alignment with NIMHANS in the beginning and in regular intervals.

Remember: The survey has to be completed in a period of 8 months from the date of appointment of field staff. The budget provided by MOHFW is for this duration and cannot be extended. The survey team has to be continuously monitored to see timely progression of activities and for smooth completion of all activities.

It is good to type out the contact details of the entire survey team with their name, contact numbers and email Ids and paste it on the wall in the office. A copy can also be provided to all team members.

3.0 STUDY INSTRUMENTS

The study instruments used in the NMHS 1 and NMHS MCS were reviewed for their appropriateness and ability to achieve the study objectives and following instruments have been identified for the main survey. After discussions and consultations with the State / UT teams, revisions have been made and the final set of instruments has been loaded onto the tablets. The final sets of instruments are:

a) Cluster Details

b) Socio-demographic Form

c) Screening for Symptoms Of Others (SOO) from head of household

d) Physical Illness including COVID-19

e) WHO-5 Well-being Index Questionnaire

f) Screening for Premenstrual Dysphoric Disorder & Peri-Menopausal Syndrome

g) Screening for Neurocognitive Disorders

h) Loneliness Scale

i) Flexible Interview for ICD-11 (FLII-11-Adult/Adolescent)

j) NMHS-2 Disability Scale

k) Health Treatment and Care Questionnaire

l) Barriers to Service Utilisation

m) Questions to assess individual stigma

n) Caregiver burden

o) Screening for epilepsy

p) Checklist for parental concerns

The flow of the questionnaire is added below:

FLOW CHART -3: NMHS-2 QUESTIONNAIRE

Draft.1.0

Approach the Head of the Household / Responsible Respondent

Seek consent from the Head of the Household/ Responsible Respondent

No consent

(Terminate the interview)

Yes (Consent received)

(Continue to collect Household Details)

1. DetailsofHeadoftheHousehold/ResponsibleRespondent 2. DetailsoftheFamilyMembers

3. Symptomsofothersquestionnaire

Seek individual consent: Yes (Consent received)

1. Adults: 18-60 years and above 60 years.

2. Adolescents: 13-17 years – Consent from parents and assent from adolescents

3. Children: 6-12 years – Consent from parents and assent from child (Conduct parental interview only)

If applicable: Ask questions related to other environmental parameters assessment

No consent

(Terminate the interview)

Yes

(Continue the interview)

If applicable: Ask questions related to other environmental parameters assessment and tribal area assessment

6-12 years

13-17 years

1. Socio- demographic

details

2. Parental concern

instrument/ checklist

1. Socio- demographic

details

2. COVID-19

3. Physical illness questionnaire

4. WHO-5 Well- being index

18-60 years

1. Socio-demographic details

2. COVID-19

3. Physical illness

questionnaire

4. WHO-5 well-being index

5. For women:

• 18-45 years:

Pre-menstrual Dysphoric

Disorder

• 45-60 years: Peri-menopausal syndrome

>60 years

1. Socio-demographic details

2. COVID-19

3. Physical illness

questionnaire

4. WHO-5 well-being index

5. Dementia assessment:

(if dementia present,)

6. Loneliness scale

FLII-11 (Adolescent)

FLII-11 (Adult)

IF POSITIVE FOR FLII-11 (ADOLESCENT OR ADULT)

FLII-11 (Adult)

Skip FLII- 11, and ask:

1. Disability scale

2. Health care and treatment assessment

3. Barriers to service utilization

4. Caregiver and family burden assessment

(To be answered by caregivers of participants who are positive for dementia)

IF positive for Disorder of Intellectual disability ask,

1. Disability scale

2. Caregiver and family

burden assessment

(To be answered by caregivers of participants who are positive for ID)

Assess:

1. Disability Scale

2. Health care and treatment assessment

3. Barrier to service utilization

4. Individual Stigma assessment

5. Caregiver and family burden

assessment

At the end of the interview ask:

• Epilepsy (GTCS) screener questions

Interview completed move to next household

Translation process of instruments

The study instrument (FLII-11) has been translated to all state languages by professional translators. The version received have been reviewed by the specialist

psychiatrist’s/psychiatry residents in training (in small teams) and checked for

conceptual congruence in wording, usage and phrases. This version was reviewed by the State / UT teams for final approval for use within the state.

The additional questionnaire apart from FLII-11 is to be translated by the respective states. The WHO guidelines for translation are attached below.

Guidelines for state teams for translating study instruments. WHO method for translation

The translation process and assessment for adequacy of translation using the standard complete back-translation method.

1. Establish a group of translators and bilingual experts who know both source and target languages, as well as the target population’s speech patterns. Ensure that the bilingual group understands the instrument’s concept, objectives, and procedures.

2. Identify a monolingual group representing the target population.

3. Translate the instrument with expert supervision, considering conceptual clarity.

4. Review the translation for potential difficulties.

5. Discuss the translation with the monolingual group, seeking clarity and cultural appropriateness.

6. Analyze feedback, revise problematic areas, and discuss with the monolingual group again.

7. Independently back-translate the revised version for accuracy. Professional translators should be used for this work in an independent manner, i.e. they should not have been exposed to the original instrument or involved in the earlier translation of the instrument

8. Compare the back-translation with the original to ensure equivalence and discuss linguistic issues.

9. Make final recommendations for amendments based on the translation/back- translation process.

10. Finalize formatting and style, considering cultural nuances and differences in languages

Source : WHODAS 2.0 Translation package. WHO. Retrieved May 10, 2024, from https://terrance.who.int/mediacentre/data/WHODAS/Guidelines/WHODAS%202.0%20T ranslation%20guidelines.pdf

A brief overview of the different study instruments is given in the following pages and the final set is given as Annexures.

3.1 General information and socio-demographic details

General information and socio-demographic details is required for the administration and management of the project activities and will ensure its smooth functioning. In addition, they are also used as explanatory variables for the survey outcomes. The household (HH) composition and socio-demographic details of the individuals within the household is to be documented adopting the standard method used for epidemiological surveys.

In the proposed system of data collection, every HH is tagged with a unique ID (location code + HH number) which is assigned when obtaining details of primary respondent within the HH and subsequently gets linked with other members of the HH. This also serves as reference for identifying the HH. For example the location codes for individual states – districts and clusters are given in the annexure.

Three sets of information need to be collected and they include:

a) Details about the primary respondent viz Responsible Respondent /Head of Household (HH):

b) Details about the Household

c) Details about the individual family member

Details about the primary respondent:

1) On reaching the identified HH, before beginning the interview, identify a primary respondent from the family / HH. This individual will provide details about the other members within the family and hence has to be chosen with care. This primary respondent need not be the Head of the Household but should be a responsible respondent. A responsible respondent is an adult member of the household, who is aware about most of the socio-demographic details about the other members of HH.

2) Enquire and record the first name, initials if any and last name of the primary respondent.

3) Record the completed age in years. If the respondent is unable to provide the month and year of birth, use the local calendar method to arrive at the month or year of birth. For purposes of the survey the age as on 1st January 2024 is used as a reference to estimate the age of the individual.

4) From the drop down provided, select State – District combination

5) From the drop down provided, select Cluster name (Gram Panchayat/ Village/ Ward/ Polling booth/ Cluster name

6) From the monitoring form 1, ascertain the HH number and enter the same.

A HH number is a running number uniquely assigned to each HH being interviewed. All habited HH within the given clusters need NOT be given numbers, while conducting NMHS.

Give separate numbers even to the HH who have refused.

Once assigned, the HH number should not be changed.

The HH number is mandatorily a four-digit number and starts from 1001.

After assigning the HH number, mark the same on the area map generated for the purpose. This is critical to locate the household for repeat visits.

Please note the HH number to be marked on the area map is the number given for conduct of NMHS and not any other number already given / available.

7) Record the gender of the person from the drop down menu

8) Seek one or more mobile numbers of the primary respondent or any other family

members easily accessible

The name, age, gender details of the primary respondent would automatically get populated into the socio-demographic form.

The following information pertaining to the family / household need to be documented in the SDI form: Cluster type (as Rural, Urban and Metro), period of residence is enquired and recorded. To facilitate supervisory visits and repeat visits the address and landmark for the HH is documented. In addition, income from other sources, whether family is classified as belonging to below the poverty line

The description of the above with respect to the entries that are to be made on the tablet is provided in the later sections of the document.

Details of individual household member will be ascertained from the primary respondent after ensuring that the individual is ordinarily resident for at least 6 months in the household. Students / adults who are staying away from the household due to reasons of study or work will not be included as member of the household. It is desirable that such details are recorded and marked accordingly.

The details of individual family member would include: name, relationship to head of HH, 24

education, occupation, marital status and Income (BPL/APL). The classification of occupation corresponds to the categories used in Census 2011 and would help in comparisons at state and national level and also corresponds to the standards recommended by the Ministry of Health and Family Welfare for Electronic health records and thus would permit comparisons within the country and outside.

3.2 Measuring Psychiatric Morbidity using FLII-11

Diagnosis in Psychiatry is currently based upon one of two classification systems (Stein & Reed 2019); mental disorders are described with diagnostic criteria (the Diagnostic and Statistical Manual of Mental Disorders or DSM 5) or diagnostic guidelines (the ICD-11). From a pragmatic point of view the process of diagnosis requires some standardization in order to ensure reliability and validity regardless of interviewer experience, patient diagnosis, disease severity or culture. Endicott (2001) found that in 40% of routine interviews clinicians failed to elicit adequate information on which to base a diagnosis. The use of Structured Diagnostic Interview (SDI) (compared to routine clinical interview) can lead to improved reliability and validity of diagnosis (Shear et al. 2000; Basco et al. 2000; Endicott 2001; Miller et al. 2001), and ultimately to an optimization of treatment and improved individual outcomes and population health. In addition, SDIs can also aid in detecting comorbid mental illness, often underrecognized in routine clinical practice (Zimmerman & Mattia, 1999, Basco et al. 2000, Pinninti et al. 2003).

An explicit aim of the WHO International Classification of Diseases 11th edition – Mental, Behavioural, and Neurodevelopmental Disorders Chapter (ICD – 11 MBND) was to improve the clinical utility of the nosology, and to ensure use in global settings by mental health workers (Reed, 2010). Clinical Utility of a classification system as defined by WHO entails:

1) Facilitating communication among practitioners, patients, families and administrators

2) Implementation characteristics (ease of use, goodness of fit, feasibility)

3) Usefulness in selecting interventions and making clinical management decisions

The ICD – 11’s clinical descriptions and diagnostic requirements (CDDR) have been found useful and reliable in comprehensive international studies (Reed et al. 2018; Hackmann et al. 2019).

A short, structured diagnostic interview based on ICD-11 – CDDR focusing on common mental disorders (CMD) and serious mental illness (SMI) was developed in 2021. This instrument may be useful for first, therapeutic trials that require large numbers of accurately diagnosed

(according to ICD-11 CDDR) patients and healthy controls in order to evaluate efficacy of interventions. Second, mental health practitioners in clinical (and some research) settings may prefer a shorter instrument when resources are limited. Third, LMICs have a paucity of psychiatrists and psychologists who can make psychiatric diagnoses. Rural areas in these countries are served largely by primary health care services staffed by health workers who often lack confidence to venture into psychiatry assessment, with mobile psychiatry clinics visiting too infrequently to address the unmet mental health needs of the community. The FLII-11 is a tool to facilitate standardised ICD-11 CDDR application.

The FLII-11 (English version) was developed by an internationally representative working group of psychiatrists and psychologists. In addition to clinical experience, the group had expertise in developing diagnostic interviews and developing a variety of mental disorder CDDRs during the 11th revision of the ICD. The group benefited from the inclusion of Prof Geoffrey Reed, the Project coordinator of the 11th Revision of the ICD-MBND. The group also had the expertise of Prof Michael First, the primary author of the SCII-11 (Structured Clinical Interview for the ICD- 11) as well as the SCID-5 (Structured Clinical Interview for the DSM-5). Aside from English, the group’s members speak Spanish, Japanese, Hindi, Portuguese, Mandarin, Italian and Afrikaans and thus have culturally diverse experiences as mental health professionals.

The FLII-11 consists of several modules, each focusing on a specific category of mental disorders as outlined in the ICD-11. These modules include Mood Episodes, Psychotic Symptoms, Primary Psychotic Disorder, Mood Disorders, Anxiety and Fear-Related Disorders, Obsessive-Compulsive and Related Disorders, Post-Traumatic Stress Disorder (PTSD) and Complex PTSD, Eating Disorders, Disorders Due to Substance Use, Disorders Due to Addictive Behaviours, Attention Deficit Hyperactivity Disorder, Possible Secondary Mental or Behavioural Syndrome, Possible Substance-Induced Mental Disorder, and Suicidal Ideation and Behaviour Screening. Each module is designed to assess both lifetime and current diagnoses, with exceptions made for certain conditions (Mixed Mood Episode, Complex PTSD (although lifetime PTSD is assessed), Attention Deficit Hyperactivity Disorder, and Suicidal Ideation and Behaviour), where assessing lifetime symptoms is deemed too challenging (Table 1). If diagnostic criteria for certain disorders i.e. Mood Disorders, Psychosis, Anxiety Disorders or OCD & Hypochondriasis is met, questions ascertaining possibility of a secondary mental or behavioural syndrome/substance induced mental disorder are asked.

The FLII-11 is intended for use by trained lay interviewers. These interviewers may include individuals with backgrounds in psychology, social work, or related fields, who have undergone specific training in the administration of the FLII-11.

Module

Corresponding ICD 11 code

Lifetime symptom assessment

Current symptom assessment

Depressive episode 6A70 Manic episode and hypomanic episode 6A60 Mixed episode 6A60 Psychotic Symptoms 6A20 Panic disorder 6B01 Agoraphobia 6B02 GAD 6B00 SAD 6B04 OCD 6B20 Hypochondriasis 6B23 Post-Traumatic Stress Disorder (PTSD) 6B40 Complex PTSD 6B41 Anorexia Nervosa 6B80 Bulimia Nervosa 6B81 Binge eating disorder 6B82

✓✓ ✓✓ ✗✓ ✓✓ ✓✓ ✓✓ ✓✓ ✓✓ ✓✓ ✓✓ ✓✓ ✗✓ ✓✓ ✓✓ ✓✓ ✓✓ ✓✓ ✗✓ ✗✓

Disorders Due to Substance Use

Disorders Due to Addictive Behaviours

6C40-49 6C50-51

Attention Deficit Hyperactivity Disorder 6A05

Suicidal Ideation and Behaviour –

Screening

Lifetime and Current Diagnoses Assessment: One of the key features of the FLII-11 is its approach to assessing both lifetime and current diagnoses for included disorders. While lifetime screening items are assessed first to minimize the number of questions asked, current screening items take precedence over lifetime diagnoses in most cases. However, complete lifetime diagnostic symptoms are assessed if lifetime screening is positive and current screening is negative. Conversely, if both lifetime and current screening are positive, complete current diagnostic symptoms are assessed. This approach ensures thorough evaluation while minimizing

redundancy in questioning.

With its modular structure, target user focus, and clear instructions for interviewers and programmers, the FLII-11 provides a valuable tool for conducting mental health assessments in a variety of settings. By enabling trained lay interviewers to administer the interview, the FLII- 11 contributes to increasing accessibility to mental health services and supports the accurate diagnosis and treatment of individuals with mental health concerns.

In addition, for the purpose of NMHS-2, if diagnostic criteria for Mood Disorders, Psychosis or OCD is met, then question about onset during peri-partum period i.e onset during pregnancy or 1 year following delivery will be asked. A question about symptom criteria being met for major disorders in the past one year to assess one year prevalence in the community has also been added for categories of Depression, Mania, Psychosis and OCD in case a person meets the syndromal criteria for any of these disorders.

3.3 Screening for Symptoms of Others from Head of household

This section contains screening questions about symptoms of mental illness in the members of the family and is to be answered by the head of the household. The disorders to be assessed are only those of severe mental illness (mania & psychosis), cognitive decline (in those over 45 years) and gaming disorder (in adolescents (13-17 years)) in members of household as information gathered from individuals about might not be reliable. For ease of initiating these questions, a screening question for anxiety is used as an ice breaking question for this section. Further, Intellectual disability is not adequately covered in FLII-11, separate screener questions developed by NIMHANS are being utilised.

3.4 Screening of Specific Populations

3.4.1 Screening for Pre-Menstrual Dysphoric Disorder (PMDD) & Peri-Menopausal Syndrome Screening questions for PMDD includes assessment of physical and mental symptoms causing dysfunction associated with pre-menstrual period in women of ages 18-44 years.

Screening questions for Perimenopausal syndrome includes physical and mental symptoms causing dysfunction associated with peri-menopausal period in women of ages 45-60 years.

3.4.2 Screening for Neuro-cognitive Disorders

These questions will be asked to all individuals above 60 years of age and everyone above 45

years of age who has screened positive in ‘Symptoms of Others’ for possible neurocognitive disorder.

This section contains a question assessing for any decline in cognitive functions. If screened yes, questions assessing associated dysfunction followed by assessment of different domains of cognitive functions are asked. Depending on the responses, an ICD-11 diagnosis of Dementia, Minor Neuro-cognitive Disorder or Amnestic Disorder is possible.

Specifier/additional questions about need for assistance and presence of a single elderly caregiver for the individual is asked.

This section also includes an objective assessment in the form of a ’10-Word Recall’ Test (both immediate and delayed recall) which is to be asked irrespective of responses in the above screening questions in this section. This test requires the assessor to read out a list of 10 words, thrice to the subject. A composite score of less than 11 signifies objective evidence of cognitive decline following which further assessment requires the presence of an informant.

If a person screens positive in neurocognitive disorder screening questionnaire or the 10-word recall test, additional questions for assessing behavioral and psychological symptoms of dementia should be asked to the informant.

3.4.3 Loneliness Scale

A 3 item Loneliness Scale is to be asked to all individuals above 60 years of age for assessment of subjective perception of social isolation in the elderly.

3.5 NMHS-2 Disability Scale

These questions are to be asked only if the respondent is positive for any of the FLII-11 disorders. The NMHS-2 Disability Scale is a composite of eight items designed to measure the extent to which six major domains (self-care, daily functioning, learning & cognition, interpersonal functioning, participation and work) of a patient’s life can be impaired. These questions are to be asked only if the respondent is positive for any of the FLII-11 Disorders. The scale should be administered by the Field data collector and is assessed best in the presence of an informant. Each question is rated on a Likert scale.

3.6 Health treatment and care questionnaire

These questions are to be asked only if the respondent is positive for any of the FLII-11 disorders. The health treatment and care questions record the following details: Contact with healthcare providers, if possible ranking the source of treatment (Psychiatrist, Neurologist, other Specialist doctor, Psychologist, Counsellor, Social Worker, General practitioner, Ayurveda Doctor, Yoga teacher, Unani Doctor, Siddha Doctor, Homeopathy doctor, Other specialist doctor, Native healer, Magico-religious practices, Nurse, Telephonic helplines, Online platforms, DMHP/Camps, Tele-MANAS, and/or any others) duration between onset of symptoms and consultation with a health care provider, number of treatment providers seen. Consultation at a government facility and source of referral, If medications/psychological treatment/admissions ever in lifetime and associated improvement and satisfaction with the care and approximate amount spent for treatment in last month are being documented.

3.7 Barriers to service utilization and stigma assessment:

These questions are to be asked only if the respondent is positive for any of the FLII-11 disorders. Respondents are screened for lack of service utilization which is followed by assessment of multiple factors which could be potential barriers for e.g. Cost of treatment, lack of awareness, lack of transport etc. A brief questionnaire based on the Barriers to Access to Care Evaluation-3 (BACE-3) questionnaire will be administered to gauge personal experiences with stigma.

3.8 Caregiver burden and family burden:

These questions are to be asked only if the respondent is positive for any of the FLII-11 disorders and are to be asked to the primary caregiver. Caregiver burden is assessed using the items derived from Zarit caregiver burden assessment scale, Kessler’s psychological Distress Scale (K6). To assess the family burden, a scale was adapted and developed from the interview schedule for assessing the burden on the family of a psychiatric patient. The items derived from the Zarit caregiver burden assessment scale presents statements reflecting common caregiver emotions. Respondents indicate the frequency of these feelings by circling the number that best corresponds to their experience after reading each statement. The Kessler Psychological Distress Scale (K6) is a simple measure of psychological distress which involves 6 questions about a person’s emotional state. Each question is scored from 0 (None of the time)

to 4 (All of the time). Scores of the 6 questions are then summed, yielding a minimum score of 0 and a maximum score of 24. Low scores indicate low levels of psychological distress and high scores indicate high levels of psychological distress. The family burden assessment scale assesses the effect/ impact on the finances, routine activities, recreational activities, family interaction and mental health of the family members and the rating will be given on a visual analog scale from 0-4.

3.9: Screening for epilepsy:

Epilepsy manifests in various forms, with Generalized Tonic Clonic Seizures (GTCS) being the most prevalent, accounting for approximately two-thirds of cases and easily recognizable. Therefore, there was a perceived need for a screening tool to identify individuals potentially affected by epilepsy.

The screening questionnaire recommended by the South East Asia Regional Office of the World Health Organization provides an algorithm tailored to identify persons experiencing Generalized Tonic Clonic Seizures within the community. Under the National Mental Health Survey (NMHS), individuals whose family members affirmatively respond to a history of two instances of limb jerking or rigidity, along with four or more other questions, would be identified as potentially having GTCS. Evaluation criteria also include factors such as incontinence during the seizure, presence of injury particularly tongue biting, frothing, occurrence of seizures during sleep, loss of consciousness, and absence of stress.

While frothing, injury, incontinence, loss of consciousness, and tongue biting are indicative of GTCS, the absence of stress and occurrence during sleep help distinguish them from pseudo- seizures or non-epileptic seizures.

3.10 Checklist for parental concerns:

It is a questionnaire assessing concerns for parents of children 6-12 years of age. The scale is currently being validated against Child Behavior Checklist (CBCL)

4.0 Training for study teams to conduct NMHS

In mental health surveys, translation and training are two critical requirements to obtain good quality data from the community. Various issues with regard to translations of NMHS instruments have been dealt with earlier. Training makes the data collection effort in field surveys systematic, makes the field interviews / questionnaire administration more uniform and data will be more reliable.

Following the recruitment of field staff, it is essential to prepare and train them exhaustively in data collection techniques and ensure that all of them understand the objectives of the survey and all of them administer the study instruments in a similar manner.

Based on extensive discussions at NIMHANS, experience in the NMHS-1 and the NMHS – Mega City Survey, and deliberations of the NTAG and Steering committee, it was decided to have training for the Field Data Collectors (FDCs) under NMHS for a period of 6 weeks; this would prepare them adequately and help in monitoring the quality too. The training is planned in a way that they understand all requirements and components of data collection and are thus able to perform their duties effectively throughout the period of survey.

The field survey team comprises Field Data Collectors and one study coordinator and the training is handled by the team of resource persons. The selection of teams and their roles and responsibilities has been discussed earlier (also mentioned in this section to reiterate)

Field Data Collectors: Under NMHS, the field team who do the survey and do house-hold interviews are designated as Field Data Collectors (FDC).

FDCs are persons with qualification in psychology, social work, nursing or other health sciences, selected from within the state and who are familiar in local languages. It is important that all of them have some Mental Health Background. Any previous experience in community surveys especially in the health field or mental health field is desirable.

Study Coordinator: One person in the team of FDCs will be the FDC supervisor and is designated as Study Coordinator. The Study Coordinator in addition to doing data collection will have the responsibility of planning, coordinating, supervising and monitoring all field activities.

Resource Persons for Training (RPT): This team will be led by the PI of the project in the individual state and will include apart from Co-PI, Co-I, selected staff and residents of the

departments of Psychiatry and Community medicine; 3 to 4 persons among the RPT have to be designated as Core Trainers who along with PI and Co-PI will primarily conduct the training related activities.

A training coordinator is identified from amongst the Core trainers and is responsible for the day to day conduct of the training. Their role is critical and they need to – (I) familiarize and practice all survey instruments, (ii) make preparations for training, (iii) arrange day to day logistics for training, (iv) examine all aspects of training including didactic sessions, case demonstrations, discussing vignettes, supervision of FDCs during interviews and (v) ensure that training begins on day 1 and ends as planned.

It is necessary that the entire RPT team be well versed with NMHS 2 methodology and administration of FLII and all other instruments. The PI and Co-I trained during the Master OTP at NIMHANS to conduct a two day sensitization and orientation prior to the start of the training programme for all other team members.

4.1 PREPARATION FOR TRAINING

FOCUS OF NMHS TRAINING

The focus of training under the NMHS is that all the FDCs

● understand survey procedures

● be familiar with all instruments

● ask the questions correctly

● ask the questions in the way it should be asked, and

● elicit an unbiased response

The training does not require FDCs to make a diagnosis

The following should be kept in mind before initiating the training

1) The state team including all persons involved in training (Resource Persons for Training) have to initially familiarize themselves with all components of the survey including the NMHS study instruments / tools by reading through the NMHS Master Protocol.

2) The Resource Persons for Training should also read the Operation Guidelines which includes the training section in detail before the start of the training programme. There are many stages of training, each with different objectives and guidelines. They should go through and understand the outline and objectives for each stage of training.

3) The nominated training coordinator should make all logistics arrangements in terms of class room, AV aids, paper – pencil formats of the study instruments, tablets for data collection, case demonstrations, case interviews and also organize the videos, vignettes, case studies well in advance. This saves time and also makes the training programme systematic and professional.

4) It is important that the entire team adheres to the training schedule proposed in this document. This will result in timeliness of training, good quality of training and preparing the team for uniform field data collection activities.

5) During the first week of training, and also thereafter, the FDCs should be given adequate time to read, discuss and familiarise themselves regarding the survey. Hence, a print copy of all the resource materials including the training manual should be given to the field team on the first day of training.

6) The training calendar for 6 weeks should be given to the FDC to make them familiar with

the different planned sessions and ensure that they do not miss out on any sessions. 34

The training coordinator should ensure that all the FDCs know where and what time to

meet each day.

7) The training process is participatory in nature and will use a mix of methods.

8) The training methods include training in the classroom, in the hospital and also in the community. The classroom sessions include orientation session, lectures, demonstration of interviews. The training in the hospital and in the community includes supervised interviews and independent interviews.

On many occasions, the FDCs are paired for training purposes. This will instil a sense of team work, give them the necessary support and cooperation while doing the interviews and also boosts their confidence.

9) Field staff should keep extensive notes and write down whenever they get doubts during the training period and get it clarified as soon as possible.

10) A daily log book of activities of the training has to be maintained by Training Resource Team and also each field staff. The daily log book of the FDC during the training programme would help in certifying the proficiency of the individual FDC in administering interviews. The PI and Co-PI should certify all log books on a weekly basis and NIMHANS team during their visit will also certify the same.

A training kit that contains the following should be given to each FDC before start of the training in the state.

1) Introduction of the FDC which also includes the objectives and process of NMHS and seeks support of the respondent for the interviews. Annexure XX

2) ID card issued by the PI Annexure XX

3) Training package with Hard copy of the questionnaire booklet with all the different

study instruments to be used for the NMHS 2 containing “offline version” of FLII-11, Hard Copy of the online version of FLII-11, Cover sheets and Coding sheets for use in case of tablet failure, HH format (50-75) copies of form 1 which are spiral bound, stationery like writing pad, pen, notebook, etc.,

4) One tablet for data collection which has access to internet, able to capture Geo- location. The Tablet supports the Moodle Training platform which will help the FDC to review or obtain clarification regarding one or more of the Training issues.

5) Water proof lap top backpack

Most importantly, unless the field staff are trained in the manner specified, their performance will be poor. It is critical to understand that the FDCs are not required to make any diagnoses; they only need to ask the questions properly and in the right manner. Assigning a diagnosis for a person with one or more mental health problems will be done automatically by the tablet.

Note: A certificate will be issued to the participants upon completion of the FLII-11 training, acknowledging their successful completion.

4.2.THE TRAINING PROCESS

1. The training for NMHS adopts an open format that is participatory in nature based on the principles of adult learning (Box). The entire training team should interact freely in a participatory, non-threatening and cordial environment. Respecting each other, irrespective of the educational and professional background adds value to the survey. The training will use a combination of English and the local language.

2. The training should start with a general discussion of survey and move to specific methods (selecting populations), techniques (using tablets), instruments and the interview process.

3. The training will initially adopt the Paper and Pencil Instrument (PAPI) versions and shift over to tablets during the 4th or 5th week of training.

4. Training in local language is preferable when the attempt is to understand the terminologies and colloquial equivalents of the different health symptoms that are provided in English.

5. There are training videos and PowerPoint presentations on all major modules. These are meant to be used to orient field staffs, who are new to psychiatric disorders. They need not be used verbatim – the state training resource team can modify them to suit their style of orienting the field workers. It is best if the slides are discussed in respective local languages.

6. All the videos are in English. Though the FDCs are expected to be masters-level professionals, the RPT may have to help the field staff to understand the videos. The videos can also be used as rating videos.

7. During the period of training, when patients and diseases are discussed, the RPT 37

The PRINCIPLES OF ADULT LEARNING

Adults must want to learn

Adults learn only what they feel they need to learn Adults learn by doing

Adults learn by solving practical problems

Adults learn through the application of past experiences Adults learn best in an informal environment

Adults learn the best through a variety of methods

should give examples of variations in presentations, since patients will not always present exactly as described in the slides or in the main assessment instrument the Flexible Interview for ICD-11 (FLII-11).

8. At different stages of the training, patients and non-patients need to be interviewed. The training coordinator should identify cases/ persons without mental health problems in advance for interviews and discussions.

9. The training coordinator should ensure that the pairing is changed continuously to ensure that the FDC get diverse experience and discussions.

It is essential to note that large numbers of people during the survey at the field level are unlikely to have any mental health problems. Thus, it is essential to understand the interview process and learn skills of working with apparently healthy people.

4.3 SCHEMA OF TRAINING IN DIFFERENT STAGES

1. For the different illnesses listed in the FLII, videos/power-point presentations have been provided. The purpose is to provide broad orientation to the FDC on these disorders and aim at providing a real-life picture of how patients with different diagnoses present clinically.

2. Slides of the NMHS, psychiatric disorders, and videos should be organized – day wise / session wise and pre-loaded so that every training day starts on time. As above, the case demonstrations should also be planned.

3. The discussion sessions on mental disorders should be interactive and backed up by relevant videos.

4. The training will start with paper and pencil format. The preloaded tablets sent from NIMHANS needs to be checked and kept ready for use by the 4th or 5th week of training.

5. The training involves 6 stages (Table) each approximately done in about 1 week (6 days). Thus, at the end of 6 weeks training, each FDC would have observed nearly 50 interviews and completed doing 20 including 10 in the community. In all, as a team FDCs would have observed, administered or interviewed a total of nearly 300 interviews or more collectively in each centre.

6. The training for NMHS 2 will involve TWO electronic platforms: Moodle and ReDCap

INTRODUCTION TO MOODLE PLATFORM:

1. The Moodle platform is an online learning platform that enables e-learning in a self-paced and user-friendly manner. It is an open source Learning Management System which provides the delivery of structured lessons including videos, power-point presentations, quiz, and other assignments. This would also help in centralized monitoring of the individual training sessions and thus be able to generate pre- and post-training evaluation and certification.

2. The Moodle online training platform has been configured with the NMHS-2 training modules to support training of the Field Data Collectors by the NMHS-2 team on the e-learn platform of NIMHANS. It can be used by the trained resource personnel or co-ordinators for conducting the training sessions.

3. Access to moodle should also be given to all FDCs from Day-1 of the training. FDCs will be able to go through the training resources i.e. power-point presentations on all survey instruments including all modules of the FLII-11 Questionnaire and can also view the training videos from the comforts of their own personal space and time to review what has been actively taught in the didactic lectures in the training sessions on any given day.

4. The modules of presentations and videos have been arranged in folders in a day wise manner as per the model schedule of the training program as provided here.

5. FDCs may review the material given as per the schedule or revise or refer to the material if they want to, at any point of time during the training period as well as after the survey begins. 6. Access to the platform is possible from any internet enabled device such as mobile phones, tablets or laptops.

Steps to create a Moodle account on eLearn NIMHANS NMHS-2:

Step 1: Type https://elearn.nimhans.ac.in/moodle/login/signup.ph

Step 2: Click on ‘Create new account’ on the top right corner

Step 3: Fill in all the details and click on ‘create my new account’

Step 4: Click on ‘Continue’. It’ll take you back to the home page

Step 5: Open your email account and check for a mail from NIMHANS admin Step 6: Open the mail and click on the link given in the mail

Step 7: Once you click the link, you will see a confirmation message for the creation of your account , click continue

Step 8: You’ll get a page with your name. You will be enrolled into the respective batch by the 39

Central Team. Hence, after completing registration, send a mail to nmhs2cen@nimhans.net confirming creation of the account and requesting for enrollment into the NMHS-2 FDC Training Program. After the enrollment, you will be able to access all the digital resources for FDC Training.

*Please note: Once enrolled, from our side, you can login to the e-learn website (link given

in Step 1) and start accessing the course. There are multiple courses e-learning courses on the homepage. You need to click on the course titled ‘NMHS-2 FDC Training’ to access the resources. You may also get access to the module from the dashboard of your account,

once you login.

ReDCap, Research Data Capture platform: This electronic platform is a popular and often used for Capturing data for research purposes including Clinical Trials. It is flexible, easy to use and provides for data capture both online and offline.

Please Note: REDCAP Platform is intended for training purposes via tablets for independent interviews by the FDCs from 3rd week of training onwards. Online version of the REDCAP platform should be used in each tablets via the steps given below.

Steps to access NMHS-2 questionnaire on Redcap:

Step 1: Click on https://connect.nimhans.ac.in/redcap/surveys/?s=NCEJYLFL8NH3KEHE to access the different sections of the NMHS-2 questionnaire.

Step 2: After completing one section click on ‘next’ to move to the next section.

Step 3: Once you reach the last section click ‘submit’ button to complete the interview.

Note: The responses will be directly saved to the redcap server.

The Technical team is finalizing the exclusive software for NMHS 2 set of study instruments including for FLII. The ReDCap platform has been created for purposes of training and also as a back up data collection process. The general description of the software is mentioned below:

Software Overview Introduction:

The NMHS 2 application is an innovative digital solution designed to revolutionize the collection and analysis of mental health data across diverse settings, including clinical environments and community outreach programs. Developed by the E-Health Research Centre at IIIT, Bangalore, this application aims to streamline data management processes, ensuring that mental health professionals can collect, manage, and analyze data with greater efficiency, accuracy, and security. This powerful tool is being built to support the growing needs of mental health research and services, offering robust features that cater to various stakeholders, from researchers to administrators.

Key Features:

1. Cross-Platform Compatibility:

The application is designed to operate seamlessly on both Android and iOS tablets, as well as standard web browsers. This ensures that users can access the application from various devices, enhancing flexibility and convenience in data collection activities.

2. Admin and Super Admin Portals:

These web-based portals provide comprehensive functionalities for managing users, groups, survey setups, language and questionnaire management, and data visualizations. Administrators can efficiently control and oversee the survey processes, ensuring that data collection is organized and systematic.

3. Offline Data Collection:

The mobile application supports offline data collection, allowing users to gather data without an internet connection. This feature is particularly useful in fieldwork scenarios where internet access may be limited or unavailable. Once connectivity is restored, the collected data can be synchronized with the server.

4. Advanced Survey Management:

The application offers sophisticated survey management tools, enabling users to create, distribute, and manage surveys efficiently. Features include customizable templates, multilingual support, and dynamic question branching, allowing for tailored survey experiences.

5. Data Visualization and Reports:

The software includes powerful data visualization tools that transform collected data into 41

insightful graphs, charts, and reports. These visualizations help stakeholders easily understand and analyze the data, facilitating informed decision-making and reporting.

6. Detailed Documentation

To facilitate effective use of the National Mental Health Survey application, a comprehensive e-manual is provided within the application. This includes detailed information on the software’s features, usage guidelines, and best practices.

At all the stages of training, observation, administration and practice involves extensive discussions amongst the team especially when working in pairs. This brings clarity in thinking, helps sort out differences, ensures uniformity and brings familiarity and competency in interviewing skills.

4.4 OVERVIEW OF TRAINING

Stage / Stage 1:

Day 1 to

Stage 2: Day 4 to

Week

Focus of training / Activity

ORIENTATION AND SENSITISATION

1. Understanding mental health problems and their Presentation

2. Orientation to NMHS and familiarity with methods and NMHS tools.

3. Interviewing skills OBSERVATION AND DISCUSSION

Didactic lectures using power-point presentations and training videos (shared by NIMHANS). To the extent possible ensure that didactic sessions of training are followed by observation of psychiatric interviews in the clinic or hospital as conducted by a trained mental health professional and case discussion (at least for major diagnostic categories).

DEMONSTRATION and ADMINISTERING NMHS INSTRUMENTS

Demonstration of administering NMHS instruments in the hospital

Attempt NMHS interviews FDC would learn to administer NMHS instruments on both persons with and without mental illness

Expected outcome

Knowing NMHS & Orienting to Interviewing skills

Achievable targets

Participation in all the sessions on all days of training

day 3

Day 16

Becoming familiar with interview methods, and presentation of mental health problems

FDC in small groups will observe 10 interviews / clinical workup being done by a mental health professional

Stage 3: Week 3

Become familiar with NMHS instruments and steps of interview

Be able to administer NMHS interviews under supervision and learn the use of tablets

Each FDC will individually do 2 supervised interviews; in groups, observe 15 supervised interviews; in pairs do 5 unsupervised interviews and to check data transferring process in software.

Stage 4: Week 4

OBSERVATION AND DISCUSSION of Special

Modules

Adolescent/Geriatric/Disability/Treatment gap Didactic lectures using power-point presentations and training videos (shared by NIMHANS) specific to the modules above.

To the extent possible ensure that didactic sessions of training are followed by observation of psychiatric interviews in the clinic or hospital as conducted by a trained mental health professional and case discussion.

GAINING PROFICIENCY IN INTERVIEWS Acquiring proficiency in administering NMHS instruments and being evaluated for the skills

TRAINING IN THE COMMUNITY

Administration of NMHS instrument in the community

MICROPLANNING MONITORING AND SUPERVISION One day to Identify HH within clusters, and individuals

within the HH, initiating interview, and continued training to ensure completion of an interview including declaring non-responders and filling up of monitoring formats Subsequent days for revision or can consider to be reserved for missed training days.

Becoming familiar with interview methods, and presentation of mental health problems

FDC in small groups will observe atleast two interviews / clinical workup being done

by a mental health professional on adolescent /geriatric patient. They will independently do the same in at least one patient for geriatric/adolescent and remaining modules.

Observe other FDC carrying out modules.

Each FDC to do 15 independent interviews on respondents.

Audio record at-least one interview for review.

Each FDC will complete 15 interviews and will be reviewed by the RPT.

Audio record at-least one interview for review.

Completing monitoring forms, and other issues

Stage 4: Week 5 Day 1-3

Stage 5:

Week 5 (Day 4-

6) & Week 6 (Day 1 to Day 3)

Stage 6: Week 6 Day 4-6

Gaining complete skills in conducting interviews

Becoming familiar to conduct NMHS interviews at the community level

Preparing for field survey including micro-planning and logistics arrangement and monitoring and supervision

4.5 THE TRAINING SCHEDULE

4.5.1 Week 1[Day 1 – 3]: Orientation and sensitization to NMHS

Objectives:

By the end of day 3, the FDC should have broad knowledge about:

1. The National Mental Health Survey, the reasons for doing the survey and its

importance and Neuro-psychiatric problems of public health importance

2. The different study sites in the state and the areas they have to survey

3. The different instruments being used in the survey and the purpose of each one

4. The overall survey technique, procedures to be followed, and the logical flow

5. Basic Interviewing skills

6. Ethical, cultural and gender-related issues that come up when interviewing a subject

Guidelines for training during week 1 (Day1-3):

1. Before the start of the training programme, the training coordinator / PI should ensure that all the FDCs know where and what time to meet.

2. The training programme to be started with an informal inaugural session which would involve introduction of the NMHS team, NMHS Resource persons for Training and also self -introduction of the participants. The training kit has to be provided for the FDCs.

3. Every day other than the first day, a 60-minute time slot should be set aside exclusively as self-learning time prior to start of the days’ work. The FDC has to use this time to review the activities undertaken the previous day, compare the notes with each other,

flag issues for discussion for the day, also read-up

for the days deliberations.

Afternoon

Continued line by line reading of OG

Monitoring and Consent form

Interactive session on NMHS study instruments

Day 1

Day 2

Day 3

Morning

– Orientation to NMHS – Reading of OG

-Steps of conducting surveys, -General steps of interviews -Ethical, cultural and gender issues

An overview to the methodology of NMHS-2 that includes study areas, locating households and individuals

4.5.2

Week 1, 2 & 3 (Day 4-16) Observation and Discussion

OBJECTIVES:

By the end of Day 16, each FDC must have:

1. Knowledge and basic understanding of all modules of FLII-11

2. Observed 10 interviews being done in a routine clinical setting

3. Discussed details of all the observed cases and their presentation (different

nuances of cases) and – learn specific interview skills, familiarize themselves with skills required for conducting interviews

Guidelines for training during week 1-3 (Day 4-16) LECTURE SERIES

One lecture each for all modules (14) covered in FLII-11 questionnaire has to be held by a FLII- 11 trained resource person along with power point presentation. Each lecture should cover a brief introduction about the disorder and the major contents in FLII-11. The duration of the lectures should be approximately 1 hour including time for discussion. The lecture has to be designed in a way that FDCs can clarify their doubts as and when required after going through the questions in their respective hard copies. All the FDCs should be requested to actively participate in this interactive session. The entire training team should interact freely in a participatory, non-threatening and cordial environment.

VIDEO DEMONSTRATION

Following every lecture, a video demonstrating simulation of an interview as per the relevant FLII-11 module should be displayed to the FDCs to facilitate better understanding. This should be followed by a discussion and clarification of doubts for 10-15 minutes.

OBSERVATION OF LIVE INTERVIEWS WITH PATIENTS

1. 2.

The Training coordinator(s) to assign a clinician (e.g., a Senior or Junior Resident) for 2

to 3 FDCs.

FDCs would observe interviews being done on real patients with a variety of psychiatric illnesses so that they become familiar with different nuances of case presentation and be aware of specific symptoms.

3. During this stage, the FDCs should work in pairs with an assigned trainer (8 FDC with 4 trainers) and observe him/her take history, do physical and mental status examination, formulate and discuss with the trainers.

4. Each pair would observe 5 interviews per day during the first half of days 15 & 16 that covers different disorders. The goal is to demonstrate and assure the FDCs that they can conduct the interviews.

5. There is flexibility on what cases are seen on what day. If persons with a particular illness in the FLII-11 do not present to the OPD on any of the 2 days, it is not ideal but is acceptable.

6. The pairs of FDCs should be interchanged regularly to enhance the learning experience.

7. The FDCs would make notes of the cases that they have seen and would bring the notes

for discussion during second half of the day.

8. The FDC will shadow the assigned clinician for the first half of the day (5 hours).

9. During the second half (2 hours), the clinician should discuss with the FDC about steps of conducting interviews and also become aware of different signs and symptoms of the illness. Focus to be on screener questions from FLII-11 modules related to the cases seen during the first half. Difficulties generally crop up while interviewing patients. The FDCs should learn from the trainer the methods of involving family members in such situations.

● Please note that at the discussion stage, the trainer needs to be at least a senior resident/tutors/ lecturers or equivalent (post MD). Otherwise, it might compromise the standard of training for the NMHS and is best avoided.

Day 4

Day 5

Day 6 Day 7

Morning

Didactic Lecture on Depressive Episode Module

Didactic Lecture on Manic, and

Hypomanic Episodes & Mixed Episode Modules

Didactic Lecture on Psychotic Symptoms, Primary Psychotic Disorder Modules

Afternoon

Video Demonstration of the depressive episode module

Video Demonstration of the manic

& hypomanic episodes and mixed episode module

Video Demonstration of Psychotic Symptom Module

SUNDAY/HOLIDAY

Day 8

Day 9

Day 10

Day 11

Day 12 Day 13

Didactic Lecture on Anxiety & Fear Related Disorder Modules (Panic Disorder, Agoraphobia, Generalized Anxiety Disorder, Social Anxiety Disorder)

Didactic Lecture on OCD & Hypochondriasis Modules, Possible Secondary Mental or Behavioural Syndrome and Possible Substance induced Mental Disorder

Didactic Lecture on Eating Disorders and PTSD

Didactic Lecture on Disorders due to substance use and Disorders due to addictive behaviors module

Didactic Lecture on ADHD & Suicide Screening Modules

Didactic Lecture on Cluster Details, Socio-demographic form, Symptoms of Others

FDC will observe Clinician- case history taking of new cases on one or more cases of the following: Psychosis, BPAD, Depression, Anxiety Disorders, OCD, Substance Use including alcohol, tobacco and others, Suicidality.

Video Demonstration of Anxiety Disorder Modules

Video Demonstration of OCD and Hypochondriasis Modules and Secondary Disorders

Video Demonstration of Eating Disorders Module and PTSD Module

Video Demonstration of Disorders due to substance use and Disorders due to addictive behaviors module

Video Demonstration of ADHD & Suicide Screening Modules

Didactic Lecture on Physical Illness, COVID-19 Screening and WHO-5 Well being Index

Discussion about observed cases (signs/symptoms) and interview technique.

DAY 14

Day 15 Day 16

SUNDAY/HOLIDAY

Observation of Psychiatric Interviews in clinical settings (OPD/IPD)

Discussion and Interactive Session Discussion and Interactive Session

4.5.3 Week 3 [Day 17 – 21]: Demonstration and Administering NMHS Instruments

Objectives:

By the end of Day 21 each FDC must have

● Become comfortable with the interview process, terms and nomenclature used while interviewing

● Understand the method of use of tablets and complete one dummy interview entry in redcap/software and send to NIMHANS.

● The FDC should have understood how to administer the NMHS instruments, specifically FLII-11.

● FDCs should have observed how to ask questions appropriately, elaborate as necessary, frame and reframe questions within the boundaries of the FLII-11 and other survey instruments

● Each FDC would have witnessed demonstration of 15 NMHS interviews (simulated/with patients/volunteers) with focus on FLII-11

● Each FDC should do 2 supervised interviews. The focus of interviews is on FLII- 11 modules.

Guidelines for training during week 3:

The focus in this stage is on demonstration of the NMHS instruments including FLII-11 and beginning to learn how it is to be administered. Please note the emphasis is NOT on diagnosis and non-patients can also be interviewed.

During this stage also, the FDCs will continue to work in pairs / groups with an assigned trainer and observe him/her administer FLII-11 for patients with different mental health problems on the first half of Day 17.

During the second half on day 17 and Day 18, the FDCs in groups do and observe simulated interviews among themselves/interviews with volunteers. (Total 2 supervised interviews per FDC). A dummy data sheet will be sent to the survey coordinator in the 3rd week of training by the central team at NIMHANS. Each FDC should enter this dummy data in redcap/software and send the data to NIMHANS for checking the data transfer.

Day# Day 17

Day 18 Day 19 Day 20

Morning Session (4 Hours)

Demonstration of NMHS interview with focus on FLII-11 on patients with major diagnostic categories by the Clinician

Simulated interviews by FDCs Simulated interviews by FDCs Simulated interviews by FDCs

Afternoon Session (3 hours) Simulated interviews by FDCs

Simulated interviews by FDCs

Simulated interviews by FDCs Dummy interview entry in redcap

Steps of data transfer to NIMHANS Day 21 SUNDAY/HOLIDAY

4.5.4 Week 4[Day 22 – 28]: Observation and Discussion of Special Modules

Objectives: By end of Day 28 FDCs must:

1. Observation of two clinical interviews of special population groups

(Adolescent/Geriatric)

2. Learning how to interview special population groups (adolescent/geriatric) using

FLLI-11 Adolescent version and NMHS Neurocognitive Disorders Screening

Questionnaire

3. Learning how to apply the NMHS-2 Disability Scale and Health Treatment and Care

Questionnaire, Barriers to Service Utilization and 5 Question Stigma Indicator

Scale

4. Conduct at least 1 independent interview with focus on the above special areas.

Guidelines for training during week 4:

Lectures should be held on ‘How to interview an Adolescent’ and FLII-11 Adolescent Version, Questions on Reproductive Life Events and Mental Illness and How to interview a Geriatric Person, ‘NMHS Neurocognitive Disorders Screening Questionnaire and ‘Loneliness Scale’ (followed by video demonstrations), NMHS-2 Disability Scale, Health Treatment and Care Questionnaire, Barriers to Service Utilization and Epilepsy and Care-giver Burden Assessment Scales. This is to be followed by observation of clinical interviews in adolescent and geriatric patients and administration of NMHS Interviews in adolescent/geriatric patients by the FDCs.

Day# Morning Session (4 Hours) Day 22 Didactic Lecture on ‘How to Interview

an Adolescent’ and FLII-11 Adolescent Version & ‘Reproductive Life Events and Mental Illness’

Day 23 Didactic Lecture on ‘How to Interview a geriatric person’ , ‘NMHS

Neurocognitive Disorders Screening Questionnaire and ‘Loneliness Scale’

Day 24 Didactic Lecture on ‘NMHS-2 Disability Scale’ and ‘Health

Treatment and Care Questionnaire, Barriers to Service Utilization’

Afternoon Session (3 hours)

Video Demonstration

Didactic Lecture on ‘Epilepsy’ and ‘Care-Giver Burden’

Observation of Clinical Interview of Adolescent Patients

Observation of Clinical Interview of Geriatric Patients

Administration/Observation of Independent Interview in Adolescents/Geriatric Patients (Entire NMHS Interview)

Administration/Observation of Independent Interview in Adolescents (Full NMHS Interview)

Administration/Observation of Independent Interview in Geriatric Patients (Entire NMHS Interview)

Administration/Observation of Independent Interview in Adolescents/Geriatric Patients (Entire NMHS Interview)

Day 25

Day 26

Day 27

Day 28

4.5.5 Week 5 [Day 29 – 31]: Gaining Proficiency in Interviews

Objectives:

By the end of Day 31:

▪ FDCs should gain an understanding of the NMHS interviews in more detail

▪ They should learn to interact with patients in an appropriate and respectful

manner and learn interview skills

▪ FDCs should be able to conduct the NMHS interview using tablets.

▪ Each FDCs should have done 15 independent interviews including 1 audio recorded

interview for review.

Guidelines for training during week 5

1. Each day, FDCs will interview patients

2. The first hour of the morning will be for discussing the experience and clarifying doubts

about using the NMHS instruments by the FDCs the previous day.

3. At this stage it is important to emphasize that in the field, FDCs may encounter more number of people WITHOUT a mental illness/ or people with sub-clinical psychological problems; they should be careful in assessing them. As there may be fewer numbers of people with mental illness/ cases FDCs need to be proficient enough not to miss out

on them.

4. At least one audio recorded interview per FDC with prior consent of the subject is

recommended to be sent to the central team at NIMHANS for quality/fidelity checks and feedback. Audio recordings can be uploaded on a google drive link that will be shared with the state teams by the central team.

SUNDAY/HOLIDAY

Day 29 Day 30

Day 31

Morning Session (4 Hours)

Independent NMHS-2 Interviews

Discussion

Independent NMHS-2 Interviews

Discussion

Independent NMHS-2 Interviews

Afternoon Session (3 hours)

Independent NMHS-2 Interviews Independent NMHS-2 Interviews

Independent NMHS-2 Interviews

4.5.5 Week 5 & 6[Day 32 – 38]: Training in the community

Objectives:

By the end of Day 38:

1. They should learn to interact with non-patients in an appropriate and respectful manner and learn interview skills in the community settings

2. FDCs should be able to conduct the NMHS interview using tablets in the community

3. Each FDCs should have done 15 independent interviews in the community

including 1 audio recorded interview for review

Guidelines for training during week 5 & 6 (Day 32-38)

1. Each day, FDCs will interview controls from the community settings

2. The first hour of the morning will be for discussing the experience and clarifying

doubts about using the NMHS instruments by the FDCs the previous day.

Day 32 Day 33

Day 34

Day 35 Day 36

Day 37 Day 38

Morning Session (4 Hours)

Independent NMHS-2 Interviews

Discussion

Independent NMHS-2 Interviews

Discussion

Independent NMHS-2 Interviews

Afternoon Session (3 hours)

Independent NMHS-2 Interviews Independent NMHS-2 Interviews

Independent NMHS-2 Interviews

SUNDAY/HOLIDAY

Independent NMHS-2 Interviews

Discussion

Independent NMHS-2 Interviews

Discussion

Independent NMHS-2 Interviews

Discussion

Independent NMHS-2 Interviews

Independent NMHS-2 Interviews Independent NMHS-2 Interviews

Discrepancy resolution – stepwise process

Step 1: One Field Data Collector (Interviewer) will administer the entire set of instruments pertaining to the study with specific focus on module. The questions will be administered on respondents (patient/ person without mental illness) using

the tablet provided.

Step 2: This interview will be observed and rated independently by the identified RPT (Observer) using the tablet. The rest of the FDC’s will observe the interviewer- observer pair doing this exercise.

Step 3: The observer will also make note of the discrepancies while rating.

Step 4: At the end of the interview, the FDC moves aside and the observer conducts the parts of the interview where the discrepancies were noted and clarifies the same.

Step 5: This is followed by a discussion of the discrepancies with the FDC as to why the discrepancy occurred and how the discrepancy could be resolved. The other FDC’s practice the interview and take part in the discussion.

The entire process is repeated with another interviewer – observer pair. In a given day at least 2 to 3 evaluations can be conducted.

4.5.8 Week 6 [Day 39 – 42]:

Microplanning, Monitoring and supervision for conduct of NMHS

Objectives:

At the end of day 42,

The FDC will gain enough competency to complete the NMHS interview in the field and report the field survey activities and fill up the daily monitoring formats and other field survey records

Guidelines for training during week 6

1) During this week, the FDCs also need to be trained in administration and record keeping. Refer to the relevant section of the OG for details of filling up of the formats.

2) Using the information from the interviews done during week 5 and 6, the recording and monitoring formats to be filled up on daily basis and also at the end of the week. The RPT

will review the status of the completed and incomplete interviews and also record

number and reasons for refusal.

3) The RPT will supervise the process of transfer of data from the individuals FDC tablet to

the Study Coordinator and thereon to the NIMHANS Server.

4) The reserve day is set aside to complete any unfinished agenda under the training

programme.

5) In case the reserve day is not needed the same duration to be utilized to additional

interviews (practice) either in the hospital or community.

6) FDCs are sent to identify households within clusters and individuals within the household

and initiate the interviews and declare non-responders.

7) RPTs to ensure management of logistics and continued training and monitoring.

Day 39

Day 40 Day 41 Day 42

Morning session

Orientation to Form 1, Form 1A and Form 2

Transfer of data to the coordinator

Afternoon session Orientation to Form 3 and Form 4

Steps of data transfer to NIMHANS server

Developing the field survey plan in detail and making all necessary preparations including completing logistics

Sunday/Holiday

Important note:

The FDC’s need to observe and conduct the following number of interviews in order to get certified: 1. Number of interviews Observed (all-inclusive Target: 100)

2. Number of interviews done in the hospital (all-inclusive Target: 30)

3. Number of interviews done in the community (Target: 30)

REMEMBER TO CLEAR ALL THE DATA CAPTURED DURING THE TRAINING BEFORE STARTING SURVEY IN THE FIELD.

4.6 CERTIFYING THE TRAINING OF THE FDCs

Evaluation of the competency and proficiency of the FDC at the end of the training programme is very crucial for the successful conduct of the NMHS. A mix of strategies will be adopted to evaluate each FDC before they are delegated to the field. The principle of see – do – practice guides successful training. Thus, ensuring that all the FDCs will see – do and practice a minimum number of interviews will be adopted to assess the training. If any FDC is unsuccessful in acquiring the competencies during the training, then based on the notes maintained by the FDC and the members of the RPT, specific inputs are to be provided after the completion of the entire training programme for an extended period of 3 to 5 days;

As mentioned in the earlier sections, the purpose of training is to ensure uniformity and quality in the interview process with a focus on – understanding survey procedures, being familiar with all instruments, asking the questions correctly in the way it should be asked, and elicit an unbiased response. The training does not require FDCs to make a diagnosis. This component of whether their ability to ask questions correctly towards the diagnosis generated by their interviews will be undertaken through a 5% validation sample.

The training evaluation is composite and would document both the process and outcome of training and this will be assessed at two points of time: Training related (internal evaluation) and in the last quarter of training (external evaluation).

4.6.1 TRAINING RELATED EVALUATION (INTERNAL)

Part A of the internal assessment is overall assessment about the acquisition of knowledge and skills in the training process. The RPT should assess each of the FDCs in terms of their understanding, involvement, interview skills and proficiency in conducting interviews. The RPT (preferably the PI or Co-I) should verify if each FDC has completed the indicated number of interviews: observed, simulated, supervised and independent. The PI / Co-I, in consultation with the Training coordinator rate the overall performance of each FDC over the 6-week period, on a qualitative basis as good, average or poor. Those falling in the categories of average or poor should be provided additional skills training over 3 – 4 days based on the observations in the discrepancy resolution form.

Part B of the internal assessment is an objective assessment of the quality of interviews and this needs to be done at the community level. After the completion of training in all aspects, the field staff will do pilot interviews in the allocated areas. A member of the RPT has to observe a minimum of 2 interviews undertaken by each FDC at the field level as interviews are taking place during the last 2 to 3 days of training in the community and then rate as per the checklist. The 10-item checklist form includes – approach, obtaining consent, clarity in administering FLII, other relevant sections of NMHS, level of probing, obtaining unbiased response, entering information in tablets, providing referrals and closing the interview (fixing reappointments if required). Based on the ratings, those FDCs lagging behind, needs to be provided specific inputs to bring in uniformity to the entire process.

POST TRAINING INTERNAL EVALUATION

This aspect of evaluation should be planned after initiating data collection. A minimum of 10 working days or about 2 weeks should be allowed for the field staff to gain familiarity, competency and proficiency at field level. During the third week of data collection of the main survey, each FDC has to be closely observed by a member of the RPT on the entire interview process at the door step of the respondent. The evaluation done at the end of training in the community is repeated at this stage also.

The RPT has to observe a minimum of 2 interviews undertaken by each FDC in the third week of data collection in the community and then rate as per the checklist. Based on the ratings, those FDCs lagging behind, needs to be provided specific inputs to bring in uniformity to the entire process.

4.6.2 EXTERNAL EVALUATION

The External Evaluation will be conducted by a designated person from the NMHS 2 State / UT Support Team. The faculty will conduct two evaluations

-First – Towards the end of training of the FDCs. The evaluation will involve two aspects – reviewing the training provided (including sessions/case-interviews/case-observations) at the centre level with the PI or Co-PI. The second will involve reviewing the training and competency of individual FDCs and Survey Co-ordinator by reviewing the log-book, training records, observing interview within the hospital and the community (one case

each). This represents the certification of training of the individual FDCs and aspect of evaluation should be planned before initiating data collection.

The FDC should record at least 5 independently conducted interviews after initiating the survey for purposes of Audit and Quality Assurance check by the central team at NIMHANS. Training Co-Ordinator’s/Resource Personnel of respective teams may add a audio recording of an FDC Interview with the NMHS-2 Survey Instruments during or post training for feedback and quality control purposes onto the Moodle platform. Steps to upload the audio recordings into the Moodle platform are mentioned below:

1. Login to your account via the website: http://www.elearn.nimhans.ac.in

2. Click on the course section labelled “NMHS-2 FDC Training” and scroll down to the “Audio Recordings” section

3. You can upload your recording by clicking on “Add Submission”

4. Please make sure to upload an audio file in the mentioned file formats only and name the file with the respective FDC Name, State and date of the interview.

-Second – In the first third of the survey, to evaluate the data collected, to check fidelity of the survey with operational guidelines, and to discuss any challenges reported and the steps required to correct the same. The fidelity checklist is added as an annexure.

5.0 Important operational definitions pertaining to sampling:

1. Rural area/sector: The “rural sector” means any place as per the “latest census” which meets the following criteria:

– – –

A population of less than 5,000,

Density of population less than 400 per sq km and

More than “25 percent of the male working population” is engaged in agricultural pursuits.

(www.india.gov.in/content/rural-indian)

2. Gram panchayat: Gram Panchayat consists of a village or a group of villages divided into

smaller units called “Wards”. Each ward selects or elects a representative who is known as the

Panch or ward member. The members of the Gram Sabha elect the ward members through a

direct election. The Sarpanch or the president of the Gram Panchayat is elected by the ward

members as per the State Act. The Sarpanch and the Panch are elected for a period of five

years. Gram Panchayat is governed by the elected body and administration. The secretary is

normally in charge of the administrative duties of the Gram Panchayat. (https://www.pria.org/panchayathub/panchayat_text_view.php)

3. Village: The population living in the urban areas is classified as the urban population while the population not residing in the urban areas is classified as the rural population and is organized into administrative areas following the administrative boundaries of revenue villages. These administrative areas are termed as villages in the Indian population census. A village, defined in this manner, is not a human settlement in the true sense but the lowest level administrative unit with well-defined administrative or geographical boundaries. There may be more than one human settlements or there may be no human settlement within the administrative boundary of a village.

(Chaurasia AR. Population and development morphology of villages in India. Demography India. 2017;46(2):14-30.)

4. Urban area:

Census of India defines urban areas as:

A. All places with a municipality, corporation, cantonment board or notified town area

committee, etc.

B. All other places which satisfy the following criteria:

i. A minimum population of 5,000,

ii. At least 75% of male working population engaged in non-agricultural pursuits, and

iii. A density of population of at least 400 persons per square kilometer.

(HANDBOOK OF URBAN STATISTICS – NIUA)

5. Million plus city: The Census of India defines a metropolis as a city/agglomeration with more

than one million population (10 lakh) . They are therefore also called million plus cities. There

are 53 million plus cities in the country as per the Census 2011. ( https://ebooks.inflibnet.ac.in/socp07/chapter/metropolis-and-small-towns/)

6. Non-Million plus city: towns with a population under one million (10 lakh). ( https://pib.gov.in/PressReleasePage.aspx?PRID=1798314)

7. Mahanagara Palike: is an urban local government body in India. They administer urban areas

that have a population of more than 10 lakh people. Municipal Corporations’ role is to provide

essential community services in the areas of health care, education, housing, transport etc.

(Civic Studios Interactive Tool: Structure of the Indian)

8. Municipal council: A Municipal Council (also known as Municipality, Nagar Palika, Nagar

Parishad or Nagar Palika Parishad) is an Urban Local Body that administers a city of population

100,000 or more.

(“India Constitution at Work” (PDF). National Council of Educational Research and Training. 20 January 2015.)

9. City and Town Municipal council/s / area committee: Municipalities in India are categorized

into City Municipal Councils and Town Municipal Councils or grades, the classification of which

depends on factors like population, economic growth, employment, and more.

(Chandrakala M. Administrative System of Municipal Corporations in India. Asian Review of Social Sciences. 2017 Oct 10;6(2):40-4.)

10. Ward: Urban areas are further divided into Wards (subdivision within municipality/ town)

according to its population; Citizen representatives are elected from each ward for the Local

Administrative body.

(Chandrakala M. Administrative System of Municipal Corporations in India. Asian Review of Social Sciences. 2017 Oct 10;6(2):40-4.)

11. Polling area: A polling area is a well defined and identifiable area demarcated with certain landmarks such as street, road, river, hills etc. All the electors residing in that particular polling area are enrolled in a separate part of the electoral roll and vote at the polling station created for that polling area. Every constituency is divided among several polling areas. It generally includes between 1000 to 1500 eligible individuals who vote in a particular polling booth / Station.

(Manual on Polling Station, October 2024 – Manuals – Election)

12. Polling station/ booth: A polling station/ booth is the room/ hall fixed for holding a poll where

the electors of the concerned polling area cast their votes on the day of the poll. (Manual on Polling Station, October 2024 – Manuals – Election)

5.1 SAMPLING METHODOLOGY 5.1.1 Sample Size Estimation

The sample size for State / UTs is being determined based on the findings of the National Mental Health Survey of India 2015-16 (NMHS 1), using the formula

n=(𝒛𝟐𝒑(𝟏−𝒑) (𝒅)𝟐

Where n is the sample size, z is the standard normal deviate, p is the expected prevalence, d is the relative precision.

Sample size for adult population:

From the NMHS 1, the State of Assam reported the minimum prevalence of current mental morbidity (6%). For NMHS 2, we expect a minimum prevalence of 6% of current mental morbidity among adults from any State. For a relative precision of 25% (equivalent to an absolute precision of 1.5%) and 95% confidence level, the initial sample size was estimated to be 963 individuals. In the NMHS1 data, the average cluster size was 48, with an intra-cluster correlation coefficient (ICC) of 0.1. However, in NMHS 2 the cluster size is fixed as 25 and hence we expect the ICC value to be not more than 0.08. Thus, the design effect (DE) was computed using the formula DE=1+(m-1) 𝜌 , where the average cluster size (m=25) and 𝜌 is the value of intra-cluster correlation coefficient (ρ=.08) which resulted in DE of approximately 3. Considering a nonresponse rate of 30%, the final sample size required from each State/UT is 4127 adults, approximated to 4250 adults from each State/UT with 170 clusters and with cluster size of 25.

If this same sample size is used for all State /UTs in this complex survey, different states or strata might be sampled at different rates. For instance, if this may oversample a particular demographic group/state and the sample might not reflect the actual proportions of this group/state in the population. To overcome this sampling weights are used to adjust for these unequal probabilities by assigning higher weights to under-represented groups / states and lower weights to overrepresented groups/states. This post survey estimation helps in generating unbiased estimates of population parameters such as means, proportions, and totals. However, considering the recommendation of the (ministry/ steering committee) and provide representation of larger states proportionally the multiply by a factor approach (Heeringa et.al., 2017)1 is carried out to arrive at final sample size for different State / UTs

Sample size for adolescent population:

Since the prevalence of current mental morbidity among adolescent’s is not available for States, the sample size for the adolescent population was determined based on a national-level prevalence of 7.3%, as reported by the National Mental Health Survey of India 2015-16. Expecting a prevalence of 8% current mental morbidity among adolescents in a State/UT, the initial sample size estimated was of 707 with a relative precision of 25% and 95% confidence level. As only 10 adolescents are going to select from each cluster, we expect the value of ICC to be not more than 0.05, which results in a design effect of approximately 1.5. The sample size from each Sate/UT after accounting for 30% nonresponse rate was 1541 adolescents. Since 170 clusters are going to select from each State/UT, the expected number of

1 Heeringa, S. G., West, B. T., & Berglund, P. A. (2017). Applied Survey Data Analysis. CRC Press. 60

adolescents from a State/UT is 1700. However, it may be noted that getting to interview adolescents within their households is challenging as they are usually sent out for studying and would be staying away from their households.

Final Sample Sizes for each State / UT

To account for the varying population sizes across different States and Union Territories, States and UTs are divided into five categories based on their population proportions. Final sample sizes are obtained by multiplying base sample size of 4250 by specific multipliers according to the population proportion of each state

The Sample size details for your State / UT is given in the Master Protocol and is summarized as Table.

Sample Size and Number of Clusters by Population Proportion Percentage

States / Union Territories

Population proportion percentage of the state

Sample size (Adults)

Sample size (Adolescents)

Total sample size

Number of clusters

Andhra Pradesh Arunachal Pradesh Assam

Bihar

Chhattisgarh

Goa

Gujarat

Haryana Himachal Pradesh Jharkhand Karnataka

Kerala

Madhya Pradesh Maharashtra

Manipur

Meghalaya

Mizoram

Nagaland

NCT Delhi

Odisha

Punjab

Rajasthan

Sikkim

Tamil Nadu

Telangana

Tripura

Uttar Pradesh Uttarakhand

West Bengal

Andaman Nicobar Islands Chandigarh

Daman Diu, Dadar&Haveli Jammu& Kashmir

Ladakh

Lakshadweep

Puducherry

Total

2 %-4.99 % < 2%

2 %-4.99 % 8 %-10.99 % 2 %-4.99 % <2%

5 %- 7.99 % 2 %-4.99 % <2%

2 %-4.99 % 2 %-4.99 % 2 %-4.99 % 5 %- 7.99 % 8 %-10.99 % <2% <2% <2% <2% <2%

2 %-4.99 2 %-4.99 5 %- 7.99

<2% 5 %- 7.99 2 %-4.99

<2% ≥ 11 % <2%

5 %- 7.99 <2%

<2% <2% <2% <2% <2% < 2%

5313 2125 7438 212 4250 1700 5950 170 5313 2125 7438 212 7438 2975 10413 297 5313 2125 7438 212 4250 1700 5950 170 6375 2550 8925 255 5313 2125 7438 212 4250 1700 5950 170 5313 2125 7438 212 5313 2125 7438 212 5313 2125 7438 212 6375 2550 8925 255 7438 2975 10413 297 4250 1700 5950 170 4250 1700 5950 170 4250 1700 5950 170 4250 1700 5950 170 4250 1700 5950 170 5313 2125 7438 212 5313 2125 7438 212 6375 2550 8925 255 4250 1700 5950 170 6375 2550 8925 255 5313 2125 7438 212 4250 1700 5950 170 8500 3400 11900 340 4250 1700 5950 170 6375 2550 8925 255 4250 1700 5950 170 4250 1700 5950 170 4250 1700 5950 170 4250 1700 5950 170 4250 1700 5950 170 4250 1700 5950 170 4250 1700 5950 170

% % %

% %

184881 73950

258831 7389

Determination of Number of clusters and number of households

According to the Ministry of Statistics and Programme Implementation’s Periodic Labour Force Survey report (2018–19), the estimated average household size is 4.1, inclusive of the population below 18 years old. By subtracting the average number of children (below 18 years old) per household (1.32), the average number of adults per family is approximately 2.78, which can be rounded to 3.

To determine the number of clusters, the total sample size is divided by the average cluster size of 25. For a sample size of 4250, this results in 170 clusters (4250 ÷ 25 = 170). These 170 clusters are to be selected from each State / UT. Within each cluster, the number of households is calculated by dividing the average number of adults per household (3), which gives rounded off 9 households per cluster. Therefore, 9 households per cluster should be visited to achieve the sample size. If there are any refusals or incomplete interviews, up to 3 revisits are made to collect the required data.

Sampling Design

Within the framework of the National Mental Health Survey 2 (NMHS 2) guidelines, it is mandated to do the requisite number of interviews with adults and adolescents, spread across distinct clusters. A cluster is a ward / polling booth in Rural / Indigenous areas or a UFS block in Urban areas and each is expected to yield minimum completed interviews. Use the formats provided to define and document the steps.

Step 1: MoHFW provides population projections based on Census 2011. Note down the projected Rural:

Urban population ratio for 2024 for your State/UT. Allocate the total number of clusters to the

urban area and rural area based on this proportion.

Step 2: From Census 2011 or latest State / UT data, note down the proportion of the population living

in Million plus cities and non-million plus cities within the Urban areas. Allocate the clusters (polling booths) to million-plus and non-million-plus cities based on this proportion.

Step 3:

Million Plus Cities: From among the Million plus cities, randomly select 50% of the cities from the total number of Million plus cities.

Allocate the clusters (UFS blocks) among these selected cities as per their contribution to Population Size.

The selected UFS block for each State / UT will be provided by the Central Team.

Step 4: The non-million plus urban area and rural area clusters (polling booths) will be from the districts 63

selected after stratification as per the Niti Aayog, MDPI. Rural and non-million plus clusters are allocated as per Probability Proportional to Size.

If the total number of districts is less than five in the State or Union Territory all the districts are considered to allocate the clusters amongst the selected districts according to Proportionate to Population Size.

Step 5A: In each of the selected districts, for rural / Indigenous areas, requisite number of Gram panchayats will be chosen. This list will be shared by the central team.

Step 5B: In each identified Gram panchayats, one village / ward to be randomly selected. The random selection will be done jointly by the Central Team and the State / UT Study team

Step 5C: If necessary, within the selected Village / Ward, randomly select one polling booth for conducting interviews. The random selection will be supervised by the State / UT Study team and done by the Survey Coordinator.

Step 5D: Households to be selected from this Village / Ward / Polling booth, and all eligible individuals within the selected Households need to be interviewed. The random selection will be done by the Survey Coordinator and the FDCs and supervised by the State Study team.

Step 6A: In each of the selected districts, for non-million plus city Urban area, requisite number of IV Units will be chosen. In each identified IV unit, one UFS will be randomly selected.

This list will be shared by the central team.

Step 6B: The Survey co-ordinator should liaise with the State Co-ordinator from the Central Team to obtain the UFS block maps from the NSSO-FOD (National Sample Survey Organisation Filed Office Division) responsible in each State/ UT.

Step 7: Households to be selected from within Village / Ward / Polling booth / UFS Block.

In each Cluster randomly select and list 15 households: 10 HH are to be designated as Primary HH (P-HH) and another 5 HH are designated Reserve HH (R-HH).

The random selection will be done by the Survey Coordinator and the FDCs and supervised by the State Study team. Please refer below for the process of random selection.

Step 8: All eligible individuals within the selected Households to be interviewed

– Adults >18 years of age; No upper limit

– Adolescents 13 to 17 years: Primary respondent is adolescent 64

– Children 5 to 12 years: Primary respondent is parents and Information about children should be obtained from Parents.

Please note the adult, adolescent and parent interviews should be from the same HH

TARGETS for Interview: 9 Households AND 25 Adults

a) If less than 9 HH but minimum 25 adults interviewed, complete 9 HH

After completing 9 Households (P-HH), Check gender distribution

if males or females are less than 50% of the expected (13 adults male or female), then interview in R-HHs to make up number of Males and Females for that cluster

b) There may be challenges in interviewing adolescent respondents; please discuss the difficulties in the review meeting and decide on the way forward

c) There are no targets for Child interviews as it is considered as a pilot.

The overall study design is provided as Figure

5.1.2 Preparatory activity at survey districts

Identify the districts selected for the NMHS as given in the master protocol

1. Locate the district on Google maps and mark them

2. Obtain demographic information about the district.

3. Assist accommodation for survey staff in the district HQ

4. Assist and plan movement of the survey team within the district

5. Develop a monthly micro plan separately for each district

6. Inform in writing to the Deputy Commissioner, Superintendent of Police, District Health Officer or Chief Medical Officer of the district and others about the conduct of NMHS in the district(s) and request for their cooperation and support.

5.2 *Forms to be filled pertaining to the sampling:

These forms need to be completed by the survey co-ordinator in consultation with the Principal Investigators (From Dept of Psychiatry and Community Medicine)

1. Form A-I: Details of the districts selected based on MDPI

2. Form A-II: Details of million plus cities

3. Form A-III: Details of the selected IV Units and UFS blocks in the identified million plus areas

4. Form A-IV: Details of Non-Million Plus cities

5. Form A-V: Details of the IV Units and UFS blocks in the identified non-million plus area

6. Form A-VI: Details of the Gram Panchayat

Community level stigma assessment:

After collecting the details with regard to sampling, the FDC’s need to conduct stigma assessment in the community. The Reported and Intended Behaviour Scale (RIBS) will be used to assess the community stigma.

The FDCs need to identify the 15 persons in each cluster (they can be Elected representatives, officials, persons of eminence/ local leaders/ influencers in the wards/ gram panchayats) and interview them using the RIBS Questionnaire.

Questionnaire to be asked

Level at which community stigma assessment to be conducted

Target group

Reported and Intended Behaviour Scale

1. Wards in the million and non-million plus area of the urban area.

2. Gram panchayats in the rural area

1. Elected / Public representatives.

2. Officials

3. Persons of eminence/ local

leaders/ influencers

Selection of Households

Households within the clusters are the final unit of sampling for the conduct of NMHS. Remember that in each cluster 25 adult individuals need to be interviewed and an individual should always be interviewed with respect to the HH they are staying.

At the first step households are located and selected. Then subsequently individuals within households are interviewed to complete the requisite number of interviews for the NMHS.

The commonly used survey methods to locate households for example as in Immunization Coverage Evaluation Survey will be used to locate households (HH).

Prior to the start of the survey in the cluster, as part of the exercise, the Survey Co-ordinator should conduct a walk-through. Every / any road and every part of the ward /village including the hamlets, outgrowths, janatha colonies, etc., / polling booth / UFS block should be observed and noted.

A quick note is made whether HH are habited (has one or more members living there) or un-habited. Un-habited HH are found frequently in rural / indigenous areas and they may be used as cattle shed, godown, pump house, watch house, temporary sheds for storing grains or other articles, etc.,

Shops and such other commercial establishments should NOT be considered as

Households.

This quick exercise aims to list the number of lanes/streets in the area and divide them among the FDCs. Randomly allocate the streets to the FDCs by making chits with the number of streets The number they draw will be the number of street they need to cover.

The same chit method will be used to choose the first street they need to go to out of the total streets allocated.

Use the random number table to select the households to be surveyed in each lane / street.

Figure: Selection of the household by FDC

Illustration of the currency method for selection of the first household

Each FDC (Field Data Collector) must go to their assigned street and use a currency note to determine the household they will visit.

**Example** There are 8 streets in the area, and 8 FDCs are randomly assigned to these streets. In street 1, let’s assume there are 15 houses. The respective FDC will use the last two digits of the serial number on a currency note to decide which house to start with. If the last two digits are 03, the FDC will begin at the third house (Fig c). If the last two digits are 14, the FDC will start at the 14th house.

**Example** If there are fewer streets, such as 4, then two FDCs will be assigned to each street. Independently, each FDC will use a currency note to determine HH s/he will interview. In case of conflict, it is to be mutually resolved and only one FDC will interview the HH and the second FDC will pick up another HH on a random basis.

The Survey Co-ordinator will assist the FDC in identifying the HH, resolving the selection, and ensure that each FDC complete their target number of HH of interview.

Households which need to be excluded from survey include  Abandoned residential buildings

 Building with exclusive Commercial establishments  Temporary settlements

 Hostels and PG accommodations

In Urban areas, there will be buildings with mixed use, then consider only the portion of the building which has residential use.

Fig C:

Choose 9 households referred to as P-HH in each cluster. To account for potential refusals from households, the Survey Team should have a reserve of at least 6 households. Each HH is to be given a unique non-duplicate number, that will be entered into the software.

The FDC to start and complete the HH interviews in the given set of HH. Each FDC may take two days to complete the given set of HH and complete the target number of interviews.

5.2 Selection of respondents

After locating and selecting the household for the survey, enlisting all resident members of the household is the next step. For this, identify a responsible member of the household (usually father, mother or any senior member) who is familiar about all other members of the household) and make a list of all members who are residents of the household. Within this list all eligible members above 18 years in the HH need to be interviewed. Temporary visitors/ visiting relatives who are not members of the household are not eligible to participate in survey and needs to be excluded. Proceed with the interviews only after obtaining consent from the head of the household or responsible respondent.

Refusals: If the head of the household or responsible respondent declines participation for interview, request for enlisting Name, age and gender of the usual residents of the family. If refusal for that make efforts to seek information from neighbouring HHs.

At the minimum,

– List the name of the Head of the HH or the responsible respondent

– List the number of persons within the HH

Record the refusal at the household level and go to the nearest door HH for conducting the interview

Conducting the interview

When the eligible respondent is available, then the interview is conducted (see below). In case an individual member is not available, two or more visits need to be planned.

Discuss with the head of the household / primary respondent when the respondent will be available. As far as possible, the first repeat visit needs to be planned on a holiday when the respondent is available. If the respondent is not working or going to college on a Tuesday, then the first repeat visit needs to be done on Tuesday

If the identified respondent is not available even during the second visit i.e., Tuesday holiday, another visits the third visit should be planned on a mutually convenient date and time.

Even after the third visit, the individual is not available and then he/she is declared as a non-responder.

As per the earlier calculations, completing interviewing all the eligible individuals within the 9 HH across the cluster would result in about 25 interviews. Please check if the targets have been achieved, if so, then the survey can stop within that particular cluster. However, this may not be

the case always. In the last HH, in case there are more eligible respondents, complete the survey for all the members within the household even if the number exceeds 25.

That the estimated household size of eligible respondent is less than expected is indeed rare in normal clusters, however the same may be possible in tribal/disaster zones.

In the household selection process for each polling booth area, standard survey methods are employed to identify the first household. Following this, 15 households are randomly chosen and divided into 9 Primary households (P-HH) and 6 Reserve households (R-HH). The objective is to conduct interviews with 9 households in each polling booth area, aiming for a balanced representation of adults with 13 males and 13 females as the target. After completing interviews in the 9 Primary households, the gender distribution is reviewed. If there’s an imbalance in the number of males or females in any age group, additional interviews are conducted in Reserve households until the required numbers are met, ensuring all household members are interviewed. Adolescents aged 13 to 17 are interviewed within the Primary households, with supplementary interviews in Reserve households if gender balance isn’t achieved. Interviews with children aged 6 to 12 are carried out with one or more parents, preferably the mother, within each Primary

household, with no specific target number set for children themselves.

6.0 Organizing logistics for data collection

Field work for the conduct of NMHS needs to be planned meticulously. The entire group to be sub-divided into two teams. During data collection time, the entire team will travel to the assigned district and break into two teams, with each team covering one cluster of the district. Hence, planning of survey is critical. Even though this is a better method, the choice is with the PI and CO PI to plan things as per their operational feasibility.

The study coordinator has a major role in ensuring that the teams perform to their best and as per the protocol for the study. The training provided to them must be comprehensive and proper documentation should be made of all activities. Key issues that need to be attended to are:

● Plan data collection separately for each Team.

● Micro plan to be developed. The micro-plan will assign specific activities and

responsibilities to each FDC and also provide for review at the end of the day and end of the week.

● Each FDC is to be made aware of their duties and responsibilities regarding the conduct of the survey including maintenance of the database and safe keeping of tablets.

● Identify one person in the team who is good in IT related matters. This will be of help to fix any problems with working of tablets, data transfer and other issues.

● Calculate number of days needed to complete the survey in 1 cluster and this should factor the time needed for travel to and from the headquarters.

Assuming that each FDC does 5 interviews per day, 4 persons would complete 20 contacts and it would require 2 days to complete 1 cluster of 25 interviews. However, this does not take into account the time needed for house-listing and time needed for repeat interviews, hence another day can be set aside, indicating that on an average 3 days are needed for each cluster. Thus, each team would be able to complete 4 to 5 clusters in a fortnight and would have time for HH listing and also doing follow-up activities.

These assumptions would change when the FDCs improve with time and they may need less time to complete interviews.

● The entire team should meet on one fixed day in a week at the headquarters or in survey area to review activities, identify problems and solutions, plan for next week activities and ensure that data transfer is completed.

● The FDC should follow the routine (daily and weekly) maintenance protocols regarding the tablets. Each state is encouraged to buy 2 to 3 power banks (@One power bank per team) so that the battery backup for the tablet is always assured.

● Plan travel, food and accommodation for the entire team. Inadequate planning for these can critically compromise the timelines of the survey. Ensuring that the team travel together in a common vehicle daily provides a better sense of security for the FDCs and also for safe keep of data.

● Implement the practice of check list (daily and weekly) including carrying – Drinking Water, Light snacks, Umbrella and fully charged tablet

● Always start survey in the early morning so that respondents are available. In certain areas, it may be required to have two sessions one early morning and the second, late afternoons especially to assess school going adolescents/working adults. Weekends may also be considered with a provision of compensatory holidays either mid-week or after completion of the district.

● Check local weather before starting. Sometimes, more people are available on rainy days even though travel to places might pose difficulties.

● Code sheet of the survey instruments

● Each FDC should mandatorily have the following documents at all points of time

o Identity card

o Letter from PI requesting support and co-operation

o Document indicating permission from local authorities: it can be either a separate

document or could be on the same letter seeking permission. o Code sheets for the survey instruments

o Hard copy of the NMHS study instruments

7.0 Doing data collection

Once a responsible respondent has been identified in the household, an Informed consent is first sought and all members within the household are enlisted on the tablet and in online Form 1 excel sheet

The details of undertaking data collection on the tablets are given in a later section. Filling up of Form 1, will help track incomplete response, suspended interviews, non- response, refusals within each household.

NMHS interview needs to be done for each of the adult members (≥ 18 years) of the household, adolescents between 13 to 17 years of age and parents of the 7 to 12 year old.

In the identified HH, obtain informed consent of the responsible respondent available at first contact. After completing the Socio-demographic information collection, individual interviews are undertaken as per the protocol. To recapitulate, each and every adult member should be interviewed after informed consent (where applicable assent of the adolescent and consent of the parent / guardian to be separately taken). In case of non-availability of a respondent – three repeat visits have to be made; once on a holiday and once with an appointment; should be made before declaring the individual as non- responder. Refusal and reason for refusal should be documented in Form 1, daily and weekly monitoring sheets and in the cluster summary form.

7.1 Data collection steps

It needs to be emphasized that, data collection is not just doing the interviews. The data collection begins when the FDC locates the HH and identifies the individual within the HH for interview and is complete only after closing the interview by thanking the person for their time and co-operation and the daily and weekly monitoring forms, cluster summary forms are filled up and other recording and reporting formalities are completed. The different steps in the data collection process are shown below.

Data collection steps

1. Locate the individual household in the given cluster

2. Identify a responsible respondent as the primary respondent

3. Seek details of the members residing in the HH; exclude temporary members /

residents

4. Greet the member(s) of the HH

5. Explain the purpose of NMHS

6. Give any additional information as required

7. Obtain consent for interview

8. Seek cooperation and inform about the time required

9. Ensure privacy and begin interview of the individual who is available and consented

10. Complete the administration of the different NMHS instruments

11. Close the interview by thanking the individual for their time and cooperation.

12. Offer any help (including any referrals), if needed

13. Complete interview of other eligible members of the HH by following step 3 onwards

again.

14. If any eligible member is not available on the specific day, inform about next visit and

seek appointment for interview

15. Make appropriate entries

8.0 Conducting an interview

Successful interviewing is a skill and an art and should not be treated as a mechanical process. Each interview is a new source of information, so it should be made interesting and pleasant. The art of interviewing develops with practice but there are certain basic principles, which are followed by every successful interviewer.

In the paragraphs below there are a number of general guidelines on how to build rapport with a respondent and conduct a successful interview.

8.1 Building rapport with the respondent

The interviewer and the respondent are strangers to each other and one of the first major tasks of an interviewer is to establish rapport. The respondent’s first impression of the field data collector influences his/her willingness to co-operate with the study. Be sure that your appearance is neat and your manner friendly as you introduce yourself and introduce the study objectives.

Have positive attitudes towards the respondents

It is important that you have positive attitudes towards persons interviewing and feel comfortable to interact with them. Please be aware that your prejudices, regarding the respondents will influence the interview process and impact on data collection. Respect for the respondent and interest in the life of the respondent are crucial for a successful interview.

Always have a positive approach

Never adopt an apologetic manner, and do not use words such as “Are you too busy?”, “Would you spare a few minutes?” or “Would you mind answering some questions?” Such questions are likely to invite refusals even before one starts the interview. Rather begin the survey interview with the words “I would like to ask you a few questions” or “I would like to talk with you for a few moments.”

Confidentiality of responses

If the respondent is hesitant about responding to the interview or asks what the data will be used for, explain that the information you gather will remain confidential, and that all

information will be pooled in the final report. Never mention other interviews or show completed questionnaires to other interviewers or supervisors in front of a respondent or any other person.

Answer any questions from the respondent frankly

Before agreeing to be interviewed, the respondent may ask some questions about the study or how he/she was selected to be interviewed. If required, describe in simple terms the process of selection of respondents adopted in the study. The interviewer should also explain how the information given by the respondent is important for the study and how it will be used. Be direct and pleasant when you answer. The respondent may also be concerned about the length of the interview. If the respondent asks tell him/her that the interview may take approximately thirty to forty-five minutes.

Interview the respondent alone

The presence of a third person during an interview can keep the interviewer from getting frank and honest answers from the respondent. It is therefore important that the respondent be interviewed privately and that all questions are answered by him/her. Make sure that before the start the interview and also during the interview the respondent is alone. Request any other persons present to let you conduct the interview in privacy. Never conduct an interview in a group where the others present may start answering the questions on behalf of the respondent.

In case, during the interview, there is a disruption by the arrival of another person, pause the interview, and resume the interview after making sure that you are once again alone with the respondent.

Do not make any false promises

It is common that many respondents ask about the possible benefits to them or their family from the survey. On the contrary, people may feel shy and withdrawn on answering questions. In such times, assure confidence and seek their cooperation WITHOUT making false assurances or promises. Most often, people will cooperate if they are informed properly about the survey.

8.2 Tips in conducting the interview

1) Understand the Questionnaire: Ensure that you understand the exact purpose of each question. This will help you to know if the responses you are receiving are adequate.

2) Be neutral throughout the interview

● Most people are polite and will tend to give answers that they think you want to hear. It is therefore very important that you remain absolutely neutral as you ask the questions. Never, either by expression on your face or by the tone of your voice, allow the respondent to think that s/he has given the “right” or “wrong” answers to the question. Never appear to approve or disapprove of any of the respondent’s replies.

● The questions should be carefully worded to be neutral. They should not suggest that one answer is more likely or preferable to another answer.

● If the respondent gives an ambiguous answer, try to probe in a neutral way, asking questions such as:

o “Can you explain a little more?”

o “I did not quite hear you; could you please tell me again?” o “There is no hurry. Take a moment to think about it.”

Never suggest answers to the respondent

If a respondent’s answer is not relevant to a question, do not prompt him/her by saying something like “I suppose you mean that…. Is that right?” In many cases, the respondent will agree with your interpretation of her/his answer, even if that is not what s/he meant. Rather you should probe in such a manner that the respondent himself/herself comes up with the relevant answer. You should never read out the list of coded answers to the respondent, even if s/he has trouble in answering.

Do not change the wording or sequence of questions

Ask the questions exactly as they are written in the Questionnaire. Even small changes in wording can alter the meaning of a question. Their sequence in the Questionnaire must be maintained. If the respondent has misunderstood the question, you should repeat the question slowly and clearly. If the question is still not understood, you may reword the

question, being careful not to alter the meaning of the original question. Provide only the minimum information required to get an appropriate response.

Handle hesitant respondents tactfully

There will be situations where the respondent simply says “I DON’T KNOW”, or gives an irrelevant answer, acts very bored or detached, contradicts something she/he already said, or refuses to answer the question. In these cases, you must try to re-interest the respondent in the conversation.

Do not form expectations

You must not form expectations as to the knowledge and perception of the respondents. Also do not have expectations in terms of the surrounding in which you will be interviewing. Your expectations, and the fear or awe generated by these expectations would negatively affect the process and outcome of the interview.

On the other hand, remember that differences between you and the respondent can influence the interview. The respondent, believing that you are different from her/him, may be hesitant to talk to you or alternately dominate the interview. You should always behave and speak in such a way that the respondent thinks that she/he can share her/his knowledge and experience with you and is comfortable talking to you.

Do not hurry the interview

Ask the questions slowly to ensure the respondent understands what s/he is being asked. After you have asked a question, pause and give the respondent time to think. If the respondent feels hurried or is not allowed to formulate answers, you may get a response in the form of “I DON’T KNOW” or get an inaccurate answer. If you feel that the respondent is answering without thinking, just to speed up the interview, say to the respondent, “There is no hurry. Your answer is very important so consider your answers very carefully.”

Ask all the questions

Ask all the questions, even if the respondent answers two questions at once. You can explain that you must ask each question individually, or say, ‘Just so that I am sure…’ or ‘Just to refresh my memory…’ and then ask the question.

Do not leave a question unanswered

Do not leave a question unanswered unless you have been instructed to skip the question. Questions left in blank are difficult to deal with later.

9.0 Completing survey in the cluster.

Once the requisite number of respondents has been interviewed in the cluster, using Form 3B, prepare the Cluster Summary. Please check on the following

1) The numbers on Form 1, Form 3A and Cluster Summary tally and match.

2) The cluster area map contains the location of the HH and major landmarks

3) A photo is taken in front of an educational institution or any other public building

with a visible board indicating the name of the cluster, district and state.

4) Meet the local leader or VIP and thank them for the support and co-operation

Inform / remind the persons about the nearest health facility where mental health care services are available.

Give them information about TELEMANAS.

Please Liaison with State Nodal Officer for TeleManas Seek support for NMHS 2.

Ask for IEC materials for Telemanas.

These can be pasted / distributed across HH/ Public spaces

10.0 RECORD KEEPING

Good record keeping is needed for both administrative and technical reasons. Keeping a log of the activities either daily or otherwise by all persons connected to the conduct of the survey is not just prudent practice but also essential to draw inference regarding the study progress and outcomes. All study related records should be maintained in a safe and secure place. As per GOI norms research data and related administrative data should be stored for a period of 5 years and should be made available for scrutiny to the authorized persons.

Different types of records are needed to be maintained and this section provides an overview of the records that need to be maintained by the NMHS study team members. The broad categories of persons and the records they need to be maintained is given below and is summarized in the table.

Category of NMHS study team

1. Field Data Collectors (FDC)

2. FDC supervisor / Study coordinator

3. State Study

4.NIMHANS NMHS team

Types of records to be maintained

Form M-I

Form M-IIa Form M-IIb Form M-IIIc

Form M-IV Form M-V

Form M-VI

Frequency of maintenance

Daily

Weekly Cluster summary form

After completing Re interviews

After completing a district

After completing the state

10.1 FIELD DATA COLLECTORS

Master data collection document – To be filled by the FDC:

Multiple copies (50 – 75 pages) of Form M-I to be made and spiral bound to ensure that it is well preserved for daily handling and is with each FDC. This booklet is the master document which contains the details of all the contacts made during the process of survey interviews. Details of

each and every individual contacted for interview is recorded here. The book also has provision to record the number of visits made and also put in a remark against each individual contacted wherever – whenever needed. Once the household is assigned, the FDC should fill the identifying information (complete HHID), Sl no for the individual, age and sex of all eligible members of the HH. The date and month for each visit made is entered.

Remarks column is used to record refusal or non-response and reasons for the same. It is also used to record the FDCs brief remark about the interview: co-operative, hiding information, etc., A fresh page is started for each cluster.

Form M-I: FDC daily monitoring sheet:

Form M-I is the daily record of field work of each FDC. Each FDC needs to share the details of daily work done with the FDC supervisor at the end of the day. This form provides for recording the number of HH visited on any given day, the eligible members in the HH, the number of completed interviews and pending interviews with respect to adolescents and adults and also gender-wise.

It is essential that the entries are made in pencil and finalized at the end of the day with a pen. It may be noted that, during the visit to a HH, the individual may not be available in the morning

or at the time of interviewing other family members. However, the individual may return for

the interview within 30 minutes, 60 minutes or any other time of the day. Hence the FDC should make it a point to go back to the HH before the end of the day to enquire whether the individual

is available for interview. Interviewing the individual within the same day should not be counted as a repeat visit.

Form M-IIb: Coordinator Weekly Monitoring Format (To be filled by Survey Co Ordinator)

The Coordinator Weekly Monitoring Format serves as a structured tool for tracking and evaluating 83

the progress of interviewers in conducting household interviews. It includes fields for recording the name of the interviewer, the number of households with completed interviews, and the breakdown of eligible members by gender and age group (adolescents and adults). The form also allows for remarks to be noted, providing insight into any challenges or noteworthy observations during the interviews. Totals are calculated for the current week, compared to the previous week, and cumulative figures are provided to assess overall performance over time. This format facilitates effective coordination and oversight, ensuring that interviewers are meeting targets and collecting relevant data according to established criteria.

Form M-IIc: Cluster summary form: To be filled/ updated by the survey coordinator.

The Cluster Summary Form is designed to capture essential information about a specific cluster area. It includes the name of the state and district, specifying whether the area is urban (town/municipality/ward/polling booth) or rural (Gram Panchayat/village/polling booth). Each

cluster is identified by a unique Cluster ID (XXXX.XX), and the form records the total number

of households within the cluster. Detailed household information includes the number of households that were door locked or vacant, those that refused participation, and those successfully contacted.

Form M-IV: Re-interview form:

This Re-interview Form streamlines the process by capturing essential details such as FDC Name, TAB-NO (Tabulation number), HHID (Household ID), Individual Code, Name, Age/Sex, Contact Date, and Remarks (if any). It enables efficient tracking and documentation of re-interview data, ensuring clarity and consistency in follow-up interactions with participants. This concise form offers a structured approach for conducting re-interviews, focusing on key identifiers and contact details while leaving space for any pertinent remarks. It streamlines the process, making it easier to track

and manage follow-up interactions with participants.

Form M-V: District summary form:

The District Summary Form compiles data from individual clusters within a district, presenting a comprehensive overview of survey activities. Each cluster’s name and unique ID are listed alongside the coverage dates, total completed interviews, and individual refusals. The form also includes space for remarks or observations. The “From” and “To” columns specify the coverage period for each cluster. By totaling the completed interviews and individual refusals across all clusters, the form provides a concise summary of the district-wide survey efforts. This summary enables stakeholders to assess the overall progress and identify any patterns or issues that may require further attention or action.

Form M-VI: State summary form:

The State Summary Form serves as a concise snapshot of survey activities conducted within a specific state. It systematically organizes crucial information, including district, ward, cluster details, and coverage dates. The total completed interviews and individual refusals provide insights into the overall participation rates and challenges encountered during data collection across the state. The remarks section offers space for additional context or observations pertinent to the survey process. Overall, this form offers a comprehensive overview of survey outcomes at the state level, facilitating analysis, and decision-making for stakeholders involved in the survey.

11.0 MONITORING MECHANISMS

11.1 Monitoring progress for data collection activities

Obtaining good quality data from the community is a quite complex and challenging task. This will be achieved through high-quality training and intense monitoring. Please note that each of the field data collectors to be objectively evaluated after the training and only those who perform satisfactorily will be permitted to undertake field survey. The evaluation of the FDC and their skill development after training is given under the training section.

A robust three-tier monitoring mechanism is deployed to ensure better quality of data from thse survey.

I. Field level II. State level

III. Central level

11.1.1 Field Level

The different field level monitoring mechanisms include

Activity

i. Daily monitoring

ii. Weekly meetings

iii. Supervisory field visits

iv. Re-interviews

v. Monthly review meetings

Purpose

To check for accuracy, completeness and coverage

To review the progress of work and troubleshooting field problems

To monitor the quality of field work

To monitor the quality of interviews

To monitor the progress of work in the state and plan field activities for the coming month; conduct refresher training for the field

data collectors

Person responsible Study coordinator

The Co-Principal Investigator / Co- Investigator from Public Health / Community Medicine

Two or more members from the state study team with at- least one psychiatrist and one public health / community medicine professional

The state study team including NIMHANS faculty

Daily Monitoring

Daily monitoring is achieved through review of daily monitoring sheets, spot –checks and observation of interviews.

The daily monitoring sheets will help the interviewer to keep track of the interviews in the assigned households.

Spot Checks: One of the important functions of field coordinator is to ensure quality of data collection. The field coordinator should undertake spot-checks of the household composition on a random basis for all the interviewers.

Observation of interviews: The field coordinator should observe the interviewers work regularly to ensure that the quality of the data collection remains high throughout the survey. The field coordinator should observe at least one interview per day, more frequently at the beginning of the survey and again towards the end.

During the interview, the field coordinator should monitor how the interviewer is asking questions, conducting interviews, entering the response and following the skip patterns in the tablet. Problem areas and issues should be noted in the field diary for the discussion later with the interviewer. Except for the serious mistakes, the field coordinator should not intervene during the course of interview and should not make the interviewer or respondent anxious or uneasy.

The PI and Co PI should review the surveys undertaken to check for accuracy, completeness and coverage of the interviewed members and discuss the interviewer’s quality of work for necessary corrections. Any discrepancy in the household composition like additional/fewer persons (due to visitors or relatives), omitting of eligible respondent, misclassification of children to adults and vice versa should be informed to the interviewer’s attention for necessary action.

The reasons for refusal, re-interviews, re-allocation of household, reassignment due to discrepancy and the date of appointment of pending interview may be recorded in the remarks column with a red pen. The daily monitoring sheets for the interviewer should be reviewed on daily basis and returned to the field coordinator at the end of work in each cluster.

11.1.1.1 Weekly Monitoring

At the end of each week, a weekly meeting is to be scheduled on a fixed day to review the progress of work and troubleshooting. This should be kept constant in terms of time, day and place so that it becomes regular practice. Interviews captured on the tablets on specified parameters will be reviewed by the NIMHANS team concurrently and any critical issues will be intimated immediately to the state study team for discussion in the weekly meeting. Most of the field errors can be corrected by pointing out and discussing the mistakes and errors. The weekly meeting should be used as a platform to improve the survey performance. The problem areas and issues noted down in the field dairy by the field coordinator should be brought up for discussion. The field mistakes should be discussed through examples and demonstrations through group activity without causing embarrassment to the individual interviewers. Team members learn a lot from one another through these group activities. They should feel free to discuss their own mistakes without fear or embarrassment. The interviewers should be encouraged to discuss any special situation that they encountered in the field, which were not covered in the training manual or Operational Guidelines document. The group should also discuss the possible solutions for such ‘difficult situation’ in the future. In case of difficult situation, the state team should be contacted for trouble shooting.

An interviewer who is found to be dishonest (filling wrong information knowingly) on 2 or more consecutive spot-checks and who fails to improve despite 3 repeated warnings should be considered for replacement.

The State NMHS team doing the review should sign on the Form 3B to indicate that the field work has been progressing satisfactorily. The brief notes at the back of Form 3B serves as a documentation of the weekly review and should be signed by the FDC supervisor and State NMHS reviewing team.

11.1.1.2 Supervisory field visits

The state teams have to mandatorily undertake regular supervisory field visits including surprise visits supportive supervision and monitoring. The team will observe the interviews randomly, do spot-checks; conduct re-interviews and scrutinize the monitoring sheets for correctness, completeness and coverage. The team will also provide on-site support for any

filed level problems.

11.1.1.3 Monthly review meetings

State project team will conduct a monthly review meeting at the end of each month, preferably between 20 – 25th of every month. This information will be used the monthly progress report to NIMHANS every month. The meeting should be attended by all the FDCs and the Central Study coordinator. The field coordinator will submit the cluster summary sheets and the District Summary sheets. The progress of work and the future course of activity should be reviewed in detail. The field level problems resolution should be reviewed and the observation from the supervisory field visits will be shared for appropriate action. This meeting should be chaired by the Principal and Co-Principal Investigator.

Important Note:

Audio recordings during data collection: As part of quality control, the FDCs need to randomly record 1% of the total adult interviews, that roughly sums up to 45 interviews. Therefore each FDC needs to audio record 5 interviews. Consent to be received from the participant before recording the interview (Consent form is attached in the annexure). The process of recording the interviews will be a part of the training as well.

Evaluation of the audio recordings: Evaluation of the audio recordings: Since most interviews will be conducted in the local language, the central team may face challenges in evaluating these recordings due to language barriers. Therefore, each state should partner with a local medical college. The psychiatry team from these colleges will be responsible for conducting fidelity checks on the audio recordings. The state teams must train the psychiatrists from these medical colleges to perform fidelity checks using the provided fidelity checklist, which is included as an annexure.

11.1.2 Re-interviews

On a regular basis, it is important to check whether the quality of interviews is as per the desired level. Hence, a 5% validation check is inbuilt into the survey, it is essential to plan this properly. The Re-interviews are randomly picked up from amongst the interviews done by each FDC as per the random number table. The Central team will supervise and coordinate for this activity

5% of the total adult sample (4250) will be approximately 215 interviews. Hence the 215 re- interviews will be conducted for a period of 5 months:

1. 200 re- interviews to be conducted by the State team.

2. 15 re-interviews to be conducted by the Central (NIMHANS) team.

1. Re-interviews by the NMHS State Team:

The NMHS state team will conduct a total of 200 re-interviews. Psychiatrists are assigned to conduct approximately 50 to 70 interviews, while the survey coordinator will handle the remaining 130 to 150 interviews over a span of 5 months. This means the psychiatrists need to conduct between 10 to 14 interviews per month to reach their target range, and the survey coordinator should to conduct 26 to 30 interviews monthly

2. Re-interviews by the Central (NIMHANS) Team:

15 Re interviews to be conducted by the Central (NIMHANS) team during the monitoring and

evaluation visits. The Central team can make 2 visits, each visit will be for 2-3 days, during the period of 5 months. In the first visit out of 15 re-interviews, 10 re-interviews can be targeted

and the remaining re-interviews can be completed in the second visit.

Ensuring conducting the re-interviews will be the responsibility of the Central Co-oridnation team. The scheduling of the central team visits, accommodation and any other arrangements with regard to the monitoring and Evaluation visits would be the responsibility of the state team. It is important that Re-interviews are done over the entire survey period and the required number 225 to be completed.

11.1.3 State level

This is done through joint review meetings by the state project team and NIMHANS team on a fixed day decided in advance. The progress of work, quality of data and any other logistics, technical and operational issues which are critical to be reviewed.

A. Monitoring NMHS progress at state level Comprehensive state level monitoring of NMHS

Activity

Preliminary preparation

1. Read through and familiarize with the Master protocol and OG document

2. Constitute and complete the core team and support team

a. State team constituted

b. Support team constituted

3. Complete administrative formalities (signing MOA, opening bank account, informing state officials, etc.,)

a. MOA signing completed

b. Modification to MoA signing

completed

c. Bank account opened

d. State officials informed

e. Information sent to other stake

holders

4. Obtain ethical approvals for study

a. Proposal submitted

b. Approval obtained

5. Constitute state advisory committee

a. Committee constituted

b. First meeting held

Training related activities:

6. Know in detail about the study instruments

a. Reviewed by core team

b. Reviewed by all team members

7. Constitute the field survey team

a. Advertised for posts

b. Selection completed

c. Team appointed

8. Complete training of survey team in

a. Training started

b. Training completed

Status Initiated/planned/in progress/completed

In progress

Start date

Closing date (applicable for

only certain components)

9. Train the field team in use of tablets

a. Transfer and receipt of tablets

b. Training started

c. Training completed

MHSA Activities

10. Initiate and complete district and state mental health assessment activities

a. Proformae review status

b. Proformae sent to districts

c. Completed proforma received

d. Discussed in state meeting

e. Signed off by PI

f. Sent to NIMHANS

Field Survey related activities

11. Make preparatory work for field survey

a. Micro planning ready: Identification

and finalisation of the cluster sampling

and mapping.

b. Informed local medical college

c. Informed district management

d. Logistics in place

12. Undertake field survey in 30 clusters each in 5 districts

a. Field survey initiated

b. Field survey completed in district 1

c. Field survey completed in district 2

d. Field survey completed in district 3

e. Field survey completed in district 4

f. Field survey completed in district 5

Monitoring and evaluation activities

13. Ensure monitoring for progress and quality of survey

a. Review meetings in place

b. Refresher training conducted (after 2

months)

c. Validation exercise in district 1

d. Validation exercise in district 2

e. Validation exercise in district 3

f. Validation exercise in district 4

g. Validation exercise in district 5

14. Regular transfer of data

a. Transfer status on month 1

b. Transfer status on month 2

c. Transfer status on month 3

d. Transfer status on month 4

e. Transfer status on month 5

f. Transfer status on month 6

g. Updating daily,monthly and weekly forms.

15. Participate in meetings with NIMHANS team through Zoom or skype

a. Attended meeting in June

b. Attended meeting in July

c. Attended meeting in August

d. Attended meeting in September

e. Attended meeting in October

f. Attended meeting in November

a. Attended meeting in December

16. Plan dissemination activities at state level a. Planned

b. Completed

17. Plan scientific dissemination of survey findings

18. Submission of Monthly statement of expenditure (SOE) until 12 months.

11.1.4 Central level

At NIMHANS, the central project advisory committee will provide inputs for various components of survey and review the survey progress.

11.1.4.1 Reporting Progress

The PI has to send a monthly progress of activities in a simple format informing about the activities completed during the month and activities proposed for the next month. This should be sent to NIMHANS by 30th of every month (by 1st if, 30th falls on Sunday). The compiled reports from all states will be sent to MOHFW by 5th of every month.

12.0 ETHICAL ISSUES

Mental illness is considered a stigma by individuals and families. The NMHS questionnaire asks about personal details and behavioral issues related to one or more members of the family. They may be hesitant to answer one or more questions, refuse to answer one or more questions, and refuse to continue to answer questions at any stage of the interview. It is prudent that the field staff understand the 5 principles of conducting the survey in an ethically acceptable and desirable manner.

(1) PRINCIPLE ONE: Minimizing the risk of harm.

(2) PRINCIPLE TWO: Obtaining informed consent.

(3) PRINCIPLE THREE: Protecting anonymity and confidentiality.

(4) PRINCIPLE FOUR: Avoiding deceptive practices.

(5) PRINCIPLE FIVE: Providing the right to withdraw.

Thus, it is binding on the survey staff to obtain an informed consent before the conduct of the survey interview. Informed consent implies that the person responding to the survey questions does so after being told / informed about

● the background why this survey is being done (Mental, neurological and substance use disorders impose a significant burden; The number of people affected is not clearly known; lack of data has prevented development of programmes and services, etc.,),

● its objectives (the present survey is being undertaken to estimate the burden of MNS disorders),

● methodology (undertaken on a representative population across 36 states/UT ‘s in India involving adults and elderly (those >18 years), adolescents (13-17 years) and parents of children 5- to 12-year-old.

● the nature of the survey and the questions (survey involves only asking questions and recording answers / responses and does not involve any invasive procedure or any intervention; some of the questions may be sensitive in nature as it includes questions on your behavior and emotional / psychological aspects, each interview may take approximately 30 to 45

minutes, etc.,),

● How the data will be handled (Any information provided will be treated as

strictly confidential and maintained accordingly. Only pooled inferences

would be utilized for purposes of the study) and

● Importantly inform the respondent that they may not immediately benefit

from the survey, they have the right to refuse to answer one or more questions and their refusal will not be considered in a negative manner for any other issue.

The FDC must obtain Informed Consent (IC) (see annexure) by informing the respondent about the survey. The FDC must read out the text in the IC format in the local language of the participant, seek consent and obtain signatures / thumb impression of the individual respondent separately on the IC format. One IC form should be filled for each respondent and identified by their unique code (Location code: state – district code. cluster code. HH number. Individual member code).

For respondents between the ages of 13 and 17 years: Respondents greater than 18 years can give legally valid informed consent for themselves on their own. However, respondents between the ages of 13 and 17 years, considered adolescents, are under the care and guardianship of their parents or other legally valid elders. Hence, the parents or elders need to give consent for their child / ward to answer NMHS questions. It may be noted that these adolescent respondents do have a mind of their own and hence they also need to agree to answer the NMHS questions. Thus, in addition to their parents / guardians giving consent for NMHS interviews, the adolescents need to assent to the conduct of interview. For purposes of NMHS, a comprehensive and integrated consent and assent forms have been developed and one form each has to be signed by the parent / guardian and their adolescent for interview being conducted. Each of the consent and assent form should be pinned together and maintained as one entity.

REFERRAL SERVICES:

One key ethical issue in conduct of any survey is providing referral services for a health problem that have been reported by the individual / family. The NMHS State team should identify the nearest district or taluka level service provider, inform them about the survey and establish mechanisms for referring respondents / family members for treatment and care. The

nearest health care service provider may not be a mental health professional and hence the nearest mental health professional also needs to be enlisted for the conduct of the survey. Considering the severe shortage of mental health professionals across several regions of the country and considering the ethical issues in the conduct of NMHS, it is desirable that the day of monitoring field visits is also used if possible, to conduct a health camp for those individual with mental health problems and the same to be organized in collaboration with the local health facility. Thus, all respondents who express a need for service or where FDCs feel the need for care are referred to the nearest health care provider for treatment. In some situations, there may be need for referral to higher centers. It may be noted that, referral services to be provided not just for a mental health problem but appropriate mechanism should be set up for even general health problems. It is better to avoid standalone free distribution of drugs but link it up with existing health care service delivery mechanisms. A format of the referral card is provided as annexure.

DATA SECURITY AND DATA TRANSFER:

Maintaining confidentiality of the data collected is paramount in the conduct of NMHS. Hence, there will have to be restricted access to data that is collected. There is a need to maintain confidentiality and ensure secure data storage and transfer at all stages of the survey. The protocols for data access and accountability and also the mechanism for data storage and transfer are given separately.

13.0 Financing issues

As agreed upon by NIMHANS and all PIs in the national meeting, the budget earmarked for each state has been agreed upon. After the signing of the Memorandum of Agreement duly signed by state PI or Head of their institution and Director NIMHANS, the transfer of funds will take place at definite time points. The relevant timelines as specified in the MOA need to be specifically achieved for transfer of funds.

14.0 Dissemination, Data sharing and Publication Policy:

The goal of the NMHS was to arrive at the national estimates of persons with mental health problems and to provide this information to policy makers, planners, administrators, academicians, researchers and to other national / international agencies at both the national

and state level to enhance / strengthen / initiate mental health care services. Hence, there is an imperative to ensure that findings are communicated to all the stakeholders as well as researchers and practitioners.

Team NMHS during the discussion earlier had also highlighted the need for guidelines which would facilitate publication of scientific papers, and share results from the survey in different fora. As part of the deliberations, Data-sharing and Publication policy was deliberated and accepted as reference document by the entire Team NMHS both from the States / UTs and from NIMHANS.

The guidelines with regard to data dissemination, sharing and publications further evolved with discussions with National Technical Advisory Group and has been approved by the MoHFW. The guidelines also includes provisions for sharing data with individuals and academic bodies / organization that are not part of the NMHS team.

Recognizing the need to share scientific information, publish in high impact journals (national and international) and also facilitate dissemination of data, results and implications, NMHS core committee deliberated and has delineated guidelines. The different types of scientific communications include: state level reports, papers in scientific journals, presentation in conferences, information / resource for policy making, program development, media briefs, policy briefs, etc.,

The document is available separately but is considered as part of the NMHS 2 Master Protocol and Operational Guidelines.

Mental Health Systems Assessment

The specific instrument based on WHO-AIMS adapted and developed by the Centre for Public Health, NIMHANS documents the following set of activities within the individual districts with a DMHP programme.

1. Burden and management of mental health problems in primary care settings (PHCs / CHCs / Taluka hospitals)

2. Availability of Psychotropic drugs throughout the year in PHCs / CHCs / Taluka hospitals

3. Availability of follow up care / domiciliary care in the community

4. Public education and IEC activities

5. Outreach activities for mental health problems

6. Monitoring the quality / type / nature of services provided

7. Training / Sensitisation programme for Doctors / Other health staff like ANM, HW, etc., and Other personnel like Teachers, Lawyers, Police, etc.,

8. Linkages with other sectors / departments like Education, Women and child, Social welfare for different activities

9. Dedicated budget for mental health activities

10. Programme monitoring – Evaluation and Research

The experience of implementing this in Kolar district and Tamil Nadu state has

served as pilot examples and will be used to assess mental health services and resources in the 12 surveyed states for mental health systems assessment.

The Centre for Public Health developed and pilot tested the specific methodology to assess the Mental Health Systems both at the district level and at the state level.

The NMHS State / UT team to refer to the separate Operational Guidelines developed for conduct of MHSA.

Name:

NATIONAL MENTAL HEALTH SURVEY -2 TRAINING SUMMARY OF FIELD DATA COLLECTORS

State:

TOPICS COVERED/SESSIONS ATTENDED MORNING AFTERNOON

DAY

DATE

SIGNATURE OF CO- ORDINATOR

100

101

102

103

INTERVIEWS COMPLETED

NUMBER OF INTERVIEWS

PROFICIENCY

(BELOW AVERAGE/AVERAGE/GOOD/EXCELLENT)

• OBSERVED

• SIMULATED

• SUPERVISED

• INDEPENDENT

• DISCREPANCY RESOLUTION

SESSIONS

104

WEEKLY CONDUCT / PERFORMANCE

SIGNATURE OF PI/CO-PI

WEEK 1 (BELOW AVERAGE/AVERAGE/GOOD/EXCELLENT)

WEEK 2 (BELOW AVERAGE/AVERAGE/GOOD/EXCELLENT)

WEEK 3 (BELOW AVERAGE/AVERAGE/GOOD/EXCELLENT)

WEEK 4 (BELOW AVERAGE/AVERAGE/GOOD/EXCELLENT)

WEEK 5 (BELOW AVERAGE/AVERAGE/GOOD/EXCELLENT)

WEEK 6 (BELOW AVERAGE/AVERAGE/GOOD/EXCELLENT)

FINAL REMARKS:

SIGNATURE OF PRINCIPAL INVESTIGATOR 1:

SIGNATURE OF PRINCIPAL INVERSTIGATOR 2:

105

106

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