mental health and development a model in practice - kamha.org

8/9/2019 Mental Health and Development a Model in Practice - KAMHA.ORG

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Mental Health and Development:A Model in Practice

A Publication o BasicNeeds


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Published by

BasicNeeds158A, Parade, Leamington Spa

Warwickshire, UK CV32 4AE

UK Registered Charity Number: 1079599

First Edition 2008

This book was unded in part by the Big Lottery Fund, United Kingdom

Copyright 2008 BasicNeeds

Permission granted to reproduce or personal and educational use only. Commercial copying,hiring, lending is prohibited. This work is registered with UK Copyright Services.

ISBN: 978-0-9558880-0-7


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Concept and content development : Shoba Raja

Written and researched by : Tess Astbury, Mark Tebboth

Project management : Uma Sunder

Illustrations and design : M B Suresh Kumar

Special thanks to:

D.M. Naidu, Joyce Kingori, Peter Yaro, Firdaus Easa and Dharshini Indrasoma or providingvaluable insights into BasicNeeds programmes; Lakshmi Mohan or laying such strong

oundations or the content; Will Boyce, Victoria de Menil, Jane Turner and Jesse Zankar ortheir thought ul eedback; Sunita Singh, Lata Jagannathan and Rani Munirathnam or theirwarmth, advice and encouragement; Andrew Bates or sourcing the wonder ul photographs;Chris Underhill, who rst conceived the model or mental health and development; and,everyone working to implement BasicNeeds programmes without whom this book would

not have been written.

About BasicNeedsBasicNeeds is an international development organisation, which works to bring about lastingchange in the lives o people a ected by mental illness and epilepsy. The organisationhas built an innovative approach that tackles peoples poverty, as well as their illness. Byensuring that their basic needs are met and their basic rights are respected, BasicNeeds

aims to give hope to the thousands o people who struggle daily with the lack o treatmentand stigma surrounding their illness.

BasicNeeds works with people a ected by many types o mental and neurological illnesses,in remote rural countryside and urban slums, in Asia, A rica and South America. The work is based on the philosophy o building inclusive communities, where people with mentaldisorders through development realise their own rights.

Established in 1999 by Chris Underhill with unding rom Andrews Charitable Trust and the JoelJo e Charitable Trust, BasicNeeds has pioneered a way o working, which places people withmental disorders at the heart o all that it does.

Acknowledgements


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The number o people living in extreme poverty, that is, living on less than a dollar a day, accountsor about 20% o the worlds population. These people are some o the most vulnerable in the

world. Their ability to endure is remarkable yet they are all too aware o the ragility o theirexistence and the devastating e ects that actors such as mental illness and epilepsy can haveon their lives.

Mental disorder and poverty go hand in hand. I a person with a mental disorder and his/heramily are living in poverty, they are less able to seek and a ord treatment or absorb the loss

o a wage. They are less likely to per orm socially and economically productive roles. Alreadymarginalised, they are likely to experience urther discrimination both in the job market and romtheir own community. Furthermore this link works in both directions, with the e ect o povertyalso considered to be a contributing actor to poor mental health. That poverty and mental illnessare associated is a given, and any initiatives that address both issues are welcomed.

BasicNeeds has established an innovative way o working with poor people with mental disorderscalled the Model or Mental Health and Development. The model is implemented in poor, ruraland urban communities in 8 low- and middle-income countries. It involves measures ranging

rom income-generation activities to community mental health services, rom awareness-raisingto policy work. Through its model, BasicNeeds has proved that by working with people withmental disorders and their amilies in a holistic and participative way, their mental health can beimproved and their levels o poverty reduced.

The Millennium Village Project o the Earth Institute at Columbia University in New York City existsto demonstrate that the Millennium Development Goals (MDGs) could be realised by the targetdate o 2015. As the advisor to the UN Secretary General or meeting the MDGs, and Director o the Earth Institute, I am truly grate ul to see the e orts o organisations such as BasicNeeds inhelping to translate these goals into reality. I am sure that this book, which provides a descriptiono the model or mental health and development, will be an important source o in ormation andinspiration or those who read it.

Pre ace

Je rey D. SachsDirector

The Earth Institute at Columbia University


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I rst conceived the idea o modelling an approach to very poor and disabled people when Iwas the ounder Director o Action on Disability and Development. At that time I was writinga thesis or the School or Policy Studies, Bristol, UK in which I attempted to pin down thede ning moment when power moved rom a development organisation to groups o disabled

people. Animation seemed to be a very important part o the mix in bringing con dence tovery marginalised people and I realised that I needed to draw rom a much larger pantheon o skills and activities i e ective mainstreaming o very poor disabled people was to be e ective inresource-poor countries. This led me to think o the community as being the essential crucible

or a model and that this was where many o the required skills lay hidden.

Upon ounding BasicNeeds in 1999/2000, I took the opportunity o putting the idea into practiceand I have watched the Model or Mental Health and Development develop rom that time tothis. My old riend D.M. Naidu did the rst eld tests o the model in September 2000 and in2001/2002 we did the same in Northern Ghana with Lance Montia as the principle animator.I the model helps to create the proper conditions or recovery, then it is the BasicNeedsprogramme that provides the e ective motive orce to eld the overall concept and get theprocess going.

We work with people with epilepsy and people with mental illness, and as the rst ew pageso this book make clear, there are ar too many o each not getting any kind o attention ortreatment. I am interested in reaching as many people as is possible and thus our programmes,but most particularly our model acilitates this process. It is a model or working with themany and perhaps this is no better characterised than in the section on capacity building. Itis true to say that I have never attended a meeting where there were less than 60 people inattendance, though some o course would have carers who are very welcome and an integralpart o the process.

Tess Astbury and Mark Tebboth have done a great job, under the direction o Shoba Raja, o bringing a great deal o what we have learnt and hold dear about the model into this book. I amgrate ul to them or this wonder ul e ort. The model is a work in progress and we are thinkingover now how we can invite organisations that are not part o the BasicNeeds programmestructure to also avail themselves o the model.

Foreword


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Eight years have passed and BasicNeeds is now active in 8 countries and, to date has stronglysupported more than 50,000 people a ected by mental illness and epilepsy, their amilies andcarers. The model or mental health and development has been vital to our success and I amdelighted to bring you this book describing how it actually works in practice. I hope that you

nd the ollowing pages both an in ormative and enjoyable read.

Chris UnderhillFounder Director

BasicNeeds


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Chapter 1 Introduction 10

Chapter 2 Getting Started 16

Chapter 3 Capacity Building 20

Chapter 4 Community Mental Health 28

Chapter 5 Sustainable Livelihoods 34

Chapter 6 Research 42

Chapter 7 Management and Administration 50

Chapter 8 Training 54

Chapter 9 The People Involved 62

Chapter 10 The Models Impact 70

Contents


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Chapter 1

The implications o having a mental disorder 1 are serious and very real or millions o people

throughout the world. In 2001, the World Health Organisation reported that 154 million peopleglobally su er rom depression and 25 million people rom schizophrenia; 91 million people area ected by alcohol-use disorders and 15 million by drug-use disorders. In addition, 50 millionpeople su er rom epilepsy and 24 million rom Alzheimer and other dementias 2. The stark reality predicted by the World Health Organisation is that one in our people will develop amental illness in their li etime 3. When one considers not only the person with a mental disorder,but also their amilies and communities in which they live, it is almost certain that the impacto mental disorder will a ect all o us at some point.

In the context o low- and middle-income countries, the consequences o having a mental

disorder become even more severe. Many governments do not invest in mental health care,with one third o the global population living in countries that allocate less than 1% o theirtotal health budget to mental health. Community care acilities have yet to be developed inabout hal o the countries 4. Even where there are community care acilities, they o ten are notaccessible to all. Integration o mental health services into local health acilities is very poor. Thecurrent answer to such a lack o in rastructure is placing individuals in institutions, where theyare sometimes physically chained and abused 5. This situation is summed up by Patel who statesthat, actual investment in evidence-based mental health services in low- and middle-income

Introduction1

1 Mental disorders re er to the series o conditions known as mental illness (schizophrenia, bipolar disorder,depression, phobias, post-traumatic stress and others) as well as epilepsy.

2 World Health Organisation, Mental Health: the bare acts [Online] (World Health Organisation, 2001). Accessedonline - http://www.who.int/mental_health/en/ [Date accessed 24/01/2008].

3 World Health Organisation, World Health Report 2001: Mental Health: New Understanding, New Hope (Geneve:World Health Organisation, 2001), pp 23.

4 World Health Organisation, Mental Health Atlas 2005 (Geneve: World Health Organisation, 2001), pp 15 - 435 World Health Organisation, World Health Report 2001: Mental Health: New Understanding, New Hope (Geneve:

World Health Organisation, 2001), pp 49 - 52

Chapter 1


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Introduction

countries is grotesquely out o proportion to the need and that it would not be surprising thatthe vast majority o mental health needs in [these] countries is unmet 6.

I , in addition to this, a person with a mental disorder is also one o the millions living in

poverty, the chances o them achieving even the most basic quality o li e become increasinglyslim (see diagram below). Poor people with mental disorders are less likely to know o orable to access appropriate services, and when they do, are unable to a ord the treatment.

Their ability to work is impinged, which has a double e ect o lowering their social statusand sending them spiralling urther into poverty. Ignorance and ear o mental disordersresults in the person being cloaked in stigma and shame, discriminated against and isolated

rom amily and community li e. They are not included in the development projects that aredesigned to help li t people out o poverty, as they are o ten regarded as incapable. In act,mental well-being remains a largely ignored issue in global health, and the act that it is notincluded in the Millennium Development Goals rein orces the position that mental healthhas little role to play in major development-related health agendas 7.

It is in response to this growing understanding o the global impact o mental disorders that,in 2000, BasicNeeds was established with a vision that the basic needs o all people withmental disorders throughout the world are satis ed and their basic rights are respected.

6 Patel, V., Mental health in low and middle-income countries in British Medical Bulletin, Volume 81 82, 2007,(Ox ordUniversity Press, 2007) pp 81 - 96

7 Miranda, J. J. and Patel, V., Achieving the Millennium Development Goals: Does Mental Health Play a Role? (PublicLibrary o Science, 2005). Accessed online - http://www.pubmedcentral.nih.gov/articlerender. cgi?artid=1201694[Date accessed 24/01/2008]

8 Reproduced rom World Health Organisation, World Health Report 2001: Mental Health: New Understanding, New Hope (Geneve: World Health Organisation, 2001), pp 60

Needs o people with mental disorders 8


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Chapter 1

BasicNeeds is an international non-governmental organisation, currently working in deprivedrural and urban communities in eight low- and middle-income countries in A rica, Asia and,most recently, South America. The organisation operates using a decentralised structure,with o ces in each o the countries that it works.

BasicNeeds began its work in South India. Its rst priority was to consult with people withmental disorders, their carers and amilies, non-governmental organisations, mental healthspecialists and government o cials. The purpose o these consultations was to nd out aboutthe problems that poor people with mental disorders aced and their ideas or solutions tothese problems.

A model emerges Throughout these initial explorations, the realisation that, to bring about and sustain positivechange, mental health and socio-economic issues must be addressed concurrently became

increasingly apparent. Built around this central theme, a new approach to supporting poorpeople with mental disorders emerged which, in due course, became known as the model

or mental health and development.

The model places people with mental disorders at its core and mental health rmly within adevelopment context. Holistic in nature, it creates an environment in which people with mentaldisorders are able to address not only the illness, but also their economic and social situation.

People with mental disorders do not exist in isolation. Their quality o li e is greatly a ectedby the attitudes o the communities in which they live and the decisions made by the statethat governs them. There ore, through the model, these negative practices, belie s about andbehaviour towards people with mental disorders are challenged.

The model is ormed o 5 separate but interlinked modules; these are:

capacity building

community mental health

sustainable livelihoods

research

management and administration

Each module is put into practice via mental health and development programmes, whichoperate within a de ned geographical area where there are high levels o poverty. Peopleaccessing the programmes may be male or emale, adults or children. They will all have or berecovering rom a mental disorder 9 . Understanding that mental disorders a ect more than just that individual, programmes also work with their carer and amily members.


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Introduction

The model or mental health and development

A programme delivers the modules simultaneously. Whilst each module can operate inisolation, it is when they are implemented as a whole that the ull impact o the modelbecomes apparent; that change occurs not only in peoples mental health, but also in thelevels o poverty they experience and in their undamental human rights.

At the time o writing in 2008, 16 programmes in India, Sri Lanka, Lao PDR, Ghana, Uganda, Kenya, Tanzania and Columbia are being run by BasicNeeds. In just 8 years, these programmes havereached out to 54,076 people with mental disorders, their carers, amilies and communities.

The model in practiceMental health and development programmes build the capacity o everyone involved inmental health and development processes. Organisations already involved in developmentare equipped with the necessary skills to support people with mental disorders. Carers and

9 As all activities in the model contribute towards recovery there is no single point at which this begins to occur. Throughoutthe book, there ore, the term people with mental disorders, is used to denote people at various stages o recovery andillness. A distinction is made in the text only in those cases when recovery is a prerequisite to involvement.

Management &administration

Research Sustainable livelihoods

Community Mental health

Capacity building


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Chapter 1

people with mental disorders join in sel -help groups to provide encouragement, managetheir illness and strengthen their voices.

Community-based mental health services and acilities are also developed. By maximising

existing resources, diagnosis services and treatment are made available on a regular basis andare extended into areas where previously there was nothing. State health providers committo allocating human and nancial resources and community workers provide the day-to-day,on-going support that is so vital or people recovering rom mental disorders.

Measures are initiated to secure a su icient economic livelihood or the whole amily viaopportunities to learn new skills or get an education, return to a previous occupationor access capital. In demonstrating the positive contribution that people with mentaldisorders can make, deeply ingrained prejudices in the community and wider society arechallenged. Awareness-raising and education activities explode myths and preconceptions

about mental disorders still urther.Data is collected about the lives o people with mental disorders and the impact o themodel. Everyone involved in the model has the opportunity to analyse the data, out o whichnew insights and knowledge emerge. Fuelled by this body o evidence, mechanisms areintroduced that empower people to advocate or change in policy and practice amongstindividuals, communities and governments. The voices o people with mental disorders echothroughout.

Pulling all these initiatives together are robust management and administration systems;these ensure the success ul delivery o the model in practice.

Cross-cutting themes Throughout the model, a number o cross-cutting themes or ways o working are apparent,which shape all aspects o programme delivery.

Working in partnership is the irst o these themes and is crucial to the success o aprogramme. The statement, the whole is greater than the sum o its parts is particularlyapt here. Community-based organisations, government health services, micro- inanceorganisations, sel -help groups and many others contribute to implementing the model,enabling its reach to be maximised and increasing the likelihood o its sustainability.Furthermore, by tapping into existing resources, less energy is expelled in getting aprogramme up and running; it also means that each organisation and individual can o ertheir strengths as well as build their own capabilities by learning rom each other.

Ensuring that programmes are rooted in their community is o utmost importance.Mental health services are delivered at this level and partnerships are made with localorganisations. Community workers, who carry out much o the work in any programme, area major reason in guaranteeing it remains local and responsive. One way in which they dothis is by making home visits, which provide a link between the daily li e o a person with amental disorder and the model.


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Introduction

The practice o animation is based on the belie that by inspiring, motivating and challenginga group or community, they will be moved to action, and begin de ning their own reality,rather than being passive recipients o assistance. Animation techniques are used throughoutthe programme, as a means o breathing li e in situations and stimulating change.

Participatory techniques are used widely in all o the modules as a means o ensuring theull involvement o people with mental disorders, not only as bene iciaries but as active

contributors to the programme. Such techniques create a level playing ield and alloweveryone to o er what they can.

The nal theme, which resonates throughout the model is fexibility. The model is not a rigid,unbending structure, with the success o a programme dependent upon being implementedin one prescribed way. Rather, the model can be understood as a ramework that provesadaptable to di erent and varied circumstances. The exact nature o any programme will be

determined by the set o needs and situations speci c to the area in which it is being run.Contents

The ollowing pages describe how the model or mental health and development is put intopractice by BasicNeeds and its partner organisations via mental health and developmentprogrammes. Chapter two provides an overview o initiating a programme. This includeswhat oundations are required, assessing an areas mental health situation and shaping theprogramme to meet the needs as de ned by the bene ciaries. The subsequent ve chaptersexamine the modules within the model in more detail; outlining the purpose and describingthe activities that commonly take place within each one. As the training element o the

capacity building module is extensive, it is dealt with separately in chapter eight. BasicNeedsis an outcome- ocused organisation and the anticipated changes as a result o a programme,are stated at the start o each chapter. Chapter nine takes a look at some o the people whoare responsible or delivering a model in practice, while the nal chapter explores the overallimpact o the model.

The text is illustrated throughout, with examples rom BasicNeeds programmes in all o thecountries in which it currently operates and the personal experiences o the people involved.We hope that these portrayals will give you a real insight into, and true favour o , the model

or mental health and development, as well as motivate you to nd out more.


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Chapter 2

What does it mean? To stand the test o time, a building requires strong oundations and the same is true here.Getting started is about ensuring that the right building blocks are in place to enable theprogramme to develop and fourish.

This is achieved via a easibility study, which examines the mental health situation in an areaand the viability o establishing a programme. During this process, the groundwork is also laid,beginning with identi ying and engaging with potential partners. No programme can operatewithout resources; identi ying donors and accessing unding is, there ore, the next crucial stepand culminates in the appointment o BasicNeeds sta . They become the driving orce behindthe programme overseeing its implementation as a whole.

How does it happen?FeasibilityIn order to know how best to start and run a programme o mental health and development, itis necessary to understand the context in which the work will take place. A easibility study iscarried out be ore a programme has been established and this reviews all the relevant nationallegislation, policies, programmes and resources that impact on the mental health situation inthe whole country. Other in ormation collected includes the numbers o people with mentaldisorders, the types o illnesses and their prevalence, possible programme partners and potential

undraising opportunities. The study is usually undertaken by an individual amiliar with thecountry and culture and who has an understanding o mental health and development issues.

Excerpt rom Ghana Feasibility Study

Mental health services in Northern Ghana hardly exist. Where services do exist they arehampered by lack o acilities and innate cultural practices, which marginalise people withmental illness rom service provision. There are local and international non-governmental

Getting Started2


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Getting Started

organisations unctioning in Ghana, especially in the north, aware o the plight o peoplewith mental disorders. However, there is no evidence o immediate or uture inclusion o people with mental disorders into their programmes. The logistical problems o getting people to the south o the country or treatment, urther compounds the di culties or those people in the north. (Ghana Programme, 2001)

Identi ying PartnersPartners are almost always sought to help with delivery on the ground. This enables aprogramme to broaden its reach and impact without dramatically increasing the dependencyon and the resource requirements o BasicNeeds (as the capacity o other organisations isutilised). Furthermore, it acknowledges the importance o the existing work and value o theresources that are in place already.

Depending on the speci c circumstances, the number and type o organisations and institutions

approached as potential partners will vary as will their role. Initially, partners are identi edthrough the easibility study although the process is ongoing and new partners can come onboard at any stage. In all cases, a Memorandum o Understanding (see chapter 7) is drawnup and marks the beginning o the ormal partnership. There is no set method o engaging apartner but the process usually includes discussions with the sta , consultation and training inrelation to the programme, the model and the needs o people with mental disorders. Trainingis a vital aspect o the relationship as it helps to build the capacity o the partner organisation,increasing the likelihood that the impact will continue as skills are le t behind. Partnershipshave been success ully used in all programmes to date, although the individual approach has

di ered. For example, some partners have run speci c activities in a module while others haveimplemented one or more modules. The most important point to take rom this is that eachprogramme has developed in response to the needs and circumstances on the ground, hencethe di ering approaches in delivery.

Partnership working in India

In BasicNeeds India, the mental health programme has been extended in Kortegera and Gowribidanur taluks (unit o local goverment) by Grameena Abyudaya Seva Samsthe (GASS)with the help o Anuradha Foundation. Social Action or Child Rehabilitation Emancipationand Development (SACRED) has been invited to submit a concept note to Cord Aid, which

has promised to und the disability programme including mental health in the extensionarea. The Council or Advancement o Peoples Action and Rural Technology (part o theGovernment o India) has agreed to und the mental health programme o Nav Bharat

Jagriti Kendra (NBJK) in Jharkhand. (India Programme, 2006)


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Chapter 2

Programme planningIn order to ensure that a programme is well designed, good planning is required. A logical

ramework or log rame is used as a planning and analytical tool and enables BasicNeeds and its

partner organisations to methodically work through all aspects o a programmes design priorto submitting a unding application. Once a programme is established, log rames continue tobe developed whenever additional unding is sought.

Overallobjective

ProjectDescription /

NarrativeIndicators

Source o Veri cation

Assumptionsand Risks

What is theoverall purposeor aim?

What are thewider objectives,which theproject will helpto achieve? Longterm projectimpact?

What are thequantitativemeasures orqualitative judgements thathelp you to judgewhether thesebroad objectiveshave beenachieved?

What sourceso in ormationexist or can beprovided tomeasure theachievemento the overallobjective?

What externalactors are

necessary tosustain theobjectives in thelong run?

A logical ramework

Identi ying donors and securing undingFundraising is a huge eld in itsel and this book does not attempt to be a guide to success ulgrant-making. Below are some salient points relevant to unding a mental health anddevelopment programme (or aspects o it).

A mental health and development programme can be viewed rom many angles, meaning thatgrants do not have to be solely drawn rom donors with an interest in mental health. Otherdonors with the mission o reducing poverty, empowerment o marginalised communities,community development, advocacy or research may also be contenders.

When putting together a unding application, the easibility study has been ound to be o greatbene t in demonstrating the need or a programme. Furthermore, the act that such researchhas already been done adds gravitas to the proposal and to the applicants. The partners thathave been identi ed provide proo that there is local backing or the programme and indicatethe likelihood o its sustainability. Basing a proposal on the model or mental health anddevelopment means that the outcomes have already been de ned; urther, the achievementsare plain to see in other existing programmes. All o the above, plus the act that participatorymethods are used throughout and the people bene ting are also those de ning and shapingthe programme generally helps in the development o a strong proposal.


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Chapter 3

Outcomes The capacities o people with mental disorders, carers, amilies and communities to supportthemselves are built.

The capacities o partner organisations, health care pro essionals and mental healthpro essionals are increased in order to implement and sustain the practice o mental healthand development.

What does it mean?Capacity building begins by inviting partner organisations, general and mental health workers,people with mental disorders, their amilies and the wider community to identi y their needsand participate in the programme. Activities are then initiated that build on their skills andabilities in order that all are empowered to work towards achieving a better quality o li e orpeople with mental disorders.

Training, group development, consultation and awareness-raising measures commonly takeplace and are stimulated by power ul animation techniques. Underpinning this module is thebelie in participation; namely, that everyone has the right to realise their potential and play anactive role in de ning their uture. Through the strengthening o all involved in implementing

the model, the potential or its sustainability is increased.How does it happen?Forums or capacity buildingField consultationA eld consultation is typically the starting point o building capacity and one o the

ounding programme activities. This activity brings together people with mental disorders,their carers and amilies, and partner organisations; what comes out o it shapes the uturework o a programme according to identi ed need and demand at the grassroots level. Field

Capacity Building3


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Capacity Building

consultations are a power ul experience or all involved. For people with mental disorders,it is o ten their rst opportunity or engaging with other people as well as the rst timethat they are asked about the problems they ace and their ideas or making things better.

On the day, an animator (see chapter 9) and a process writer 1 acilitate the consultation anddocument it, respectively. The day begins with the group getting to know one another andestablishing ground rules. All activities take place in small groups. This, plus input rom theanimator ensures that everyone has an opportunity to speak. People with mental disorders

orm one group, carers another and partner organisations a third. Separating people withmental disorders rom their carers is, in itsel , a momentous and sometimes challenging

occasion or many. The rst group activity, My World asks participants to outline the people, organisations andexperiences that shape their lives.

Kwames world

Kwame, a 14-year-old boy rom Ghana has epilepsy. When it rst happened, it elt like punishment he had not in any way earned. Epilepsy, he elt, had disgraced him. He

1 Normally a member o the BasicNeeds programme team or a community worker records what is said andhappens during a gathering.

A eld consultation takes place in the shade o a tree in Tanzania


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Chapter 3

attempted suicide, eeling worthless, an outcast, his li e and e orts utile. At BasicNeeds ield consultation Kwame talked about his world, the isolation, the sense o desolation,

hidden depths o emotion out there in the open or the irst time. It brought tearsto peoples eyes, and a new understanding. (Atagona Kwames li e story, GhanaProgramme, 2006)

The next activity My Needs involves listing and discussing the issues o concern or participantsand their needs, as perceived by group members. The concluding activity looks to the uture,and asks the question What Next? A ter each activity, all participants come together and oneperson rom each o the groups reports back key points. Remaining in a large group, discussionsabout what should ollow on rom the consultation take place, as well as an exploration o whatthe group could themselves commit to and where external help is required. From the ndings,a concrete action plan is drawn up.

What next? I rst saw Gunasiri at the eld consultation that was organised by BasicNeeds in the villageo Rathmalwela, India. Not only Gunasiri, but his mother and ather also attended that day. These three individuals who had come there in search o solutions to many problemso the mind, played key and poignant roles that day. In particular, Gunasiri had aced rare and un ortunate circumstances, not o ten aced by a man during his li etime.

At the close o proceedings that day, Gunasiri was amongst the group o villagers that volunteered to orm the committee representing the village, the Volunteers Committee.They were invited to help BasicNeeds and its partner organisation, Navajeevana, in their work with people with mental disorders, getting their needs addressed, their problemssolved and their expectations achieved. (Gunasiris li e story, India Programme, 2003).

The participatory approach that is adopted in a eld consultation and throughout the model isnot new or those who have been involved in development projects o recent years. However,having so o ten been excluded, such activities may be the rst o its kind or people with mentaldisorders and their amilies. Being absolutely clear about the purpose, their role in the day andwhat will ollow is there ore o utmost importance.

Other consultations

The eld consultation is the rst o many consultations that continue to be held throughout theli etime o the programme. People with mental disorders, carers, community members, healthpro essionals and other stakeholders are consulted with, on an on-going basis, to ensure theyarticulate their changing needs as the programme progresses and give input as to how thoseneeds can be met.

Consultation meetings with young carers were conducted by Kalista, BasicNeeds sta member, and peer educators to explore in ormation on the li e o young carers and their opinion with regard to changes in their li e that they would like to see. Most o the young carers expressed their need to go back to school. It was also noted that some


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Capacity Building

primary schoolteachers are discouraging young carers by demanding them to have acomplete school uni orm. This has made young carers leave as they cannot ul ll theserequirements. (Tanzania Programme, 2007)

Sel -help groupsSel -help groups play multiple-roles and are established or a range o purposes. For example,carers and people with mental disorders may come together to orm, or join, a group toencourage better integration; others may start or join a group to provide peer support to bettermanage their illness; still others may meet to share in ormation and raise awareness in thewider community. As a sel -help group develops and grows in con dence, it o ten goes on toadvocate or the rights o people with mental disorders. Furthermore, individuals o ten start agroup as a means o generating income via such economic activities as arming, livestock andbusiness (described in chapter 5). In most cases, animators are present at the start o the li e o

the group to help the members to bond, establish their goals and begin to take action.Sel -help groups vary in structure and in size. Some groups remain small and in ormal throughouttheir li etime while others decide to become legally constituted or join together to orm a network.A key principle o sel -help groups is that the individuals who orm the group collectively decideon its purpose, structure and activities. This, in itsel , is a orm o capacity building.

Saidi Hamisi said he decided to join the Tuleane sel -help group so as to join orces with people, lend a hand in arm production and raise awareness about mental disordersin Lisekese ward. This group completely changed the perception o people in thecommunity regarding mental disorders. They have shown the community that they

Everyone has the chance to participate in discussions in small groups, India


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Chapter 3

are capable o improving their lives. People are pleasantly surprised as they see thissel -help group producing enough rom their arming. The group sells their produce toneighbouring people. They are seen to be normal, like other people. Laiza said that whenthey wait or the harvest, she engages in other small businesses like selling vegetables,

ruits and other necessities. (Laiza Jo reys li e story, Tanzania Programme, 2007)

Tools or capacity buildingAnimation

Animation is that stimulus to the mental, physical, and emotional li e o people in a givenarea; which moves them to undertake a wider range o experiences through which they

nd a higher degree o sel -realisation, sel -expression, and awareness o belonging to acommunity, which they can infuence 2.

The primary tool o capacity building, indeed o the entire model is animation. Used in manycommunity development settings, animation is more than just a set o techniques it is a wholeapproach, requiring certain values and a real belie in the potential o people to be e ective. Trained animators act as a catalyst, mobilising and breathing li e into a situation, so that people

rst realise then assess their own reality, identi y the problems and gain con dence to act. The animator continues to uel this cycle o refection and action, which in turn leads to socialchange. The group or community grows in understanding, in awareness and in con dence, andmoves rom being passive recipients to active contributors in their own development.

The basic premise behind animation is that, i a group is su iciently challenged,

inspired, motivated and encouraged, it will develop an analysis o its own problemswhich will lead it, a ter re lection, to act 3.

There are numerous opportunities to apply animation techniques within a programme. Groupso people come together in many di erent circumstances and or di erent reasons. All bene t

rom the stimulation engendered by animation. The results are particularly apparent in eldconsultations where people are being asked about their lives and the changes that they wantto make, and in sel -help groups where members must unite, plan and act together. Concreteoutcomes o animation can be seen most commonly in a groups achievements o the goals thatthey have themselves de ned. Less tangible outcomes include the emergence o new leaders,growing con dence and sel -worth amongst people with mental disorders, and an increasedability to advocate and challenge the status quo.

2 Simpson 1989, Cited in Smith, M., What is animation (In ed.org, 1999). Accessed online - http://www.in ed.org/animate/b-animat.htm [Date accessed - 25/01/2008]

3 Underhill, C. De ning Moments: A Qualitative Enquiry into Perceptions o the Process o Community DevelopmentPractice with Disabled People in Uganda (1996), pp 3


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ResearchIndividuals capacities are also built through the process o generating data and research (seealso chapter 6). Li e stories are a primary data source used or analysis in research. Yet this is not

their only purpose. For the person telling his or her story, the capacity building outcomes are o equal importance. To talk about themselves, their past experiences and uture aspirations withan interested, non-judgemental listener may have been a rare occurrence. Such a connectioninspires strength, eelings o sel -worth and is a orm o therapy in itsel . Participatory dataanalysis sessions (described urther in chapter 6) are opportunities or people with mentaldisorders, carers and others involved in a programme to meet together to analyse data orin ormation emerging rom the eld. Through this process, people with mental disordersgain new understanding into the issues a ecting them on a daily basis. They become betterequipped to deal with these issues and grow in con dence to advocate or change.

Awareness-raising and sensitisationAwareness-raising and sensitisation campaigns are used widely to challenge preconceptions,change attitudes and share in ormation about mental disorders. A variety o methodsare used to get the message o mental health and development across including street

People take to the streets to raise awareness o mental disorders in Uganda


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Chapter 3

theatre, personal counselling, sensitisation workshops, consultations and media campaigns.Awareness-raising refects local contexts, is developed in response to a speci c need andcovers a broad range o issues, including:

increasing the acceptance o people with mental disorders within the community/school/workplace;

promoting mental health services;

dispelling myths about mental disorders and its causes;

sensitising local o cials to the needs and requirements o people with mental disorders; and

encouraging policy makers to develop policies that take account o people with mentaldisorders.

Many awareness-raising activities are targeted at speci c groups, such as teachers, the police and judiciary, health pro essionals or schoolchildren. Other awareness-raising measures take place inpublic places, in towns and villages and aim to attract a large audience. Depending on the situationany number o people can participate in these activities including community workers, primaryhealth care workers, people with a mental disorder and partner organisations.

Building a community support structure through a volunteer network made a signi cant impact in changing attitudes o the community towards people with mental disorders.Volunteers conduct community meetings to create awareness on how people should associate with people with mental disorders with a greater understanding o their sensitivities. According to the volunteer group interviewed, a community meeting is called

at least once in a month in the location they work. People with mental disorders willingly participate in those meetings and present their skills, abilities etc., which makes an impact or attitudinal change o the community. (Sri Lanka Programme 2007)

Games and songsFew would deny that both mental disorders and poverty are serious matters. However, whilstthese issues should, and are addressed with due gravitas, bringing an element o un to activities

requently proves worthwhile.

Games and songs, also known as energisers, are introduced in many group activities within aprogramme. They are a means o helping a group o people, possibly strangers, to get to knoweach other and bond. They are also a great way to boost the energy o a group, particularlywhen re-gathering a ter a meal or at the start o a day. They may engender reer discussion o di cult or pain ul topics. Finally, they acilitate an environment where, despite the seriousnesso the issues at hand, people eel that they can, should they wish to, express eelings o joy.

A one-day in-door games event was organised at Ti Sampaa (a mental health acility) or people with mental disorders, carers and community-based youth clubs, traditional healers


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Capacity Building

Games are excellent ways o re-energising a group, Kenya

and drama troupes in the suburbs o Tamale, all geared towards educating society on theneed to respect people with mental disorders, roles and responsibilities o society towardsthem and integrating the person with a mental disorder into societal acceptance and li e.(Ghana Programme, Oct 2007)

Training The range and breadth o training that is carried out within a programme is considerable. There ore, whilst acknowledging that training is a key component o capacity building, it isdealt with separately, in chapter 8.


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Chapter 4

OutcomesE ective delivery o community mental health services is demonstrated

People with mental disorders, their carers and amilies are better able to manage treatmentand care needs.

What does it mean? Accessible treatment

Lallappa has regularly attended monthly treatment camps conducted by doctors rom the

National Institute o Mental Health and Neurosurgery in the nearby town o Gowribidnur.This means he does not have to travel to Bangalore but is still able to continue regular treatment and ollow up. His condition has become much more stable and he has againreturned to work. He has regained his sel -respect and once more takes an active role in theli e o his amily. (Lallappas li e story, India Programme, 2004)

The availability and e ectiveness o mental health services in many low- and middle-incomecountries is woe ully inadequate. This module has been developed in direct response to thisproblem, and envisions extending the reach o appropriate mental health services to largenumbers o people in a community setting.

This is achieved by optimising the use o the states and other local resources. Partnershipsare built with state health care providers, who commit to allocating human and nancialresources to mental health. Mental health pro essionals work closely with the BasicNeedsteam and partners to deliver community mental health services. Community workers playa vital role in ensuring the success o the module by providing on-going support to peoplewith mental disorders.

Over time, by demonstrating that e ective community mental health care can be achievedusing existing resources, it is expected that the state will agree to take responsibility or theseservices themselves.

CommunityMental Health4


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Community Mental Health

How does it happen?Building partnershipsCorrect diagnosis and treatment is an important step towards recovery or a person with a

mental disorder. O ten people with mental disorders, especially those that are also living inpoverty will not have had access to the mental health services that they require.

It is a long distance to go by bus and theres no money. I he is told to go alone, he wants me togo with him. We dont have money [to pay] or two persons. One has to earn something to beable to pay! I have to work in the eld. No one has peace o mind always thinking about work and these problems. (Carer o a person with a mental disorder, India Programme, 2004)

In order to extend diagnostic and treatment provision, partnerships are developed with state-run health services and other existing local health resources. Having rst established what

mental health care provision is currently available through the state, BasicNeeds works to gain acommitment or mental health pro essionals to provide services in areas o need, or to increasethe requency o services. To urther increase the reach and in acknowledgement o the limitednumbers o mental health pro essionals, mental health is integrated, wherever possible, intogeneral health care. Training (described in chapter 8) is provided to general health sta toenable them to treat people with mental disorders as part o their work.

In many o the countries in which BasicNeeds operates, there is either a lack o drugs or anunreliable supply o them. In addition to ensuring that human resources are allocated tomental health care, BasicNeeds also works to acilitate an adequate supply o low-cost or ree

psychotropic drugs.Community mental health services

The model demonstrates that e ective community mental health services can happen ina variety o ways. Once resources have been committed, services begin to be provided on aregular basis, in areas where there is most need and where possible, in a community setting. Insome cases, clinics may be held at existing health acilities, such as hospitals or health centresand are wholly provided or by the state.

The Nairobi City Council continues to host the outreach clinic while the Director o Mental

Health provides a regular psychiatric nurse to run the clinic in addition to psychotropic drugs. A consultant psychiatrist visits the clinic once a month to enhance the capacities o Primary Health Care sta in mental health management. (Kenya Programme, 2006)

In other circumstances, community-based organisations host the clinics at their own venues orin community centres. They take on the bulk o responsibility or the organisation o the clinicand mental health pro essionals attend to diagnose and provide treatment.

Birungi registered with the mental health clinic [hosted by the] Kamwokya ChristianCaring Community (KCCC) in September 2005. She was re erred by Daisy Kamwezi, acommunity-based volunteer with the programme. I asked Birungi about her medication


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and other orms o treatment she gets rom the programme. She was very positive about the services she receives. She said, The medication I get rom here has helped me get well

and you can see the remarkable di erence in my appearance. (Patricia Birungis li e story,Uganda Programme, 2006)

In India, health camps initially began as a way o treating large numbers o people in a relativelyshort amount o time or various medical needs such as eye care and dental care. In recognitiono their success, they have since been adapted to provide mental health care. Camps aregenerally temporary acilities and are set up just or the day that it is being held. This has theadvantage o being able to easily move locations to the areas o most need.

At the camp [in Jharkhand], two psychiatrists and one general physician attached to theState psychiatric hospital attend to people with mental disorders. Be ore the doctors arrive,

registration is done, with each person having to pay a ee o Rs.20 ($0.50) or which they get a stamped receipt and token number. People start queuing up at the gate rom 5.30am. Once the doctors arrive, people queue up according to their token number, and wait their turn or the brie consultation. Research o cers, who usually accompany the doctors,take down the history rom new patients. The drugs prescribed are then collected at the rst window where the pharmacist distributes with instructions o dosage etc. (IndiaProgramme, 2007)

Mental health pro essionals at work at an outreach clinic in Tanzania.


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The mental health services described above are not only or those attending or the irsttime to receive a diagnosis. Individuals return to them on a regular basis or check-ups andto collect their medicine. For many, these services are the only means o ormal contactwith a mental health pro essional and their only opportunity o getting a continual supplyo the correct drugs.

Adalah Ma ula, an epileptic person, told Al anis mother that in Mahuta dispensary (amental health clinic), treatment is provided or mental disorders, and that the service is

ree o cost. Al anis mother decided to take her son to Mahuta dispensary. The psychiatric nurse advised Al anis parents to start treatment or their son.

Al anis health showed remarkable improvement a ter he started treatment. His seizuresreduced to once a month and later they stopped completely. The last time he ell down wasin June 2005 when he was in the 6th standard. Al ani has not had a all since. He attends theclinic every month and he is still getting treatment. I was able to study well and understand what I was studying a ter I stopped alling. While in the 7th standard I didnt all at all. I wasthere ore able to study without problems. Thats why I passed my exams. (Al anis li e story,Tanzania Programme, 2005)

Mental health camps in India ensure that treatment is more widely available.


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Chapter 4

Identi cationOnce regular community mental health services are established, it is important that people withmental disorders attend them. However, a person with a mental disorder may be less visible intheir community, perhaps physically hidden or not welcomed at community events becauseo their illness and the stigma that so o ten surrounds it. As a result, it can be that much harderto make initial contact. Furthermore, many people with mental disorders live in rural areasand may simply be unaware o these services. Identi ying and encouraging them to attendcommunity mental health services is, there ore, crucial. Having received appropriate training,community workers undertake outreach in the areas in which they live. Frequently, they havethe added bene t o being known and trusted by those that they are reaching out to.

Eunice got to know o the mental health clinic through the community health volunteersin the area. George Ratemo comes rom this village and he knows that I su er rom amental disorder so he in ormed us - my mother and I - that a clinic was starting in theneighbourhood in the beginning o May 2006. He even sent someone to keep reminding uso the date. (Eunice Wangeci li e story, Kenya Programme, 2007)

A Ugandan community worker visits the home o a woman with a mental disorder


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BasicNeeds sta and partner organisations may also carry out this work. As well as identi yingpeople with mental disorders, they may physically attend a camp or clinic with them, as ameans o o ering moral support. Identi cation is aided by activities such as street theatreper ormances, which raise awareness o mental disorders and begins to dispel the prejudicesattached to it.

Follow-up supportCommunity psychiatric nurses continue to support community volunteers to monitor the people under treatment, provide support to carers and appropriately advise and report onthe progress o each o the people under treatment. (Ghana Programme, 2006)

For people with mental disorders, the continuous support that they receive in their owncommunity is o equal importance to the initial diagnosis and treatment at a clinic or camp. Thissupport is usually provided via home visits. Mental health pro essionals play a part in providing

on-going support, but it is community workers who undertake the majority o this work. Livingin the same neighbourhood, it is more convenient or them to drop by on a requent basis.

A major reason or ollow-up support is to ensure that the medication prescribed is beingtaken correctly. As many people in the programme are illiterate and reading the prescriptioninstructions is not an option, assistance in this matter is essential. However, ollow-upsupport goes ar beyond the boundaries o clinical treatment: o ering encouragement tocontinue with treatment; giving assurance that there are people who care or them; andproviding in ormation about clinics and other activities happening with the programme.Each time an interaction occurs, it is logged in the persons individual ile and/or their

clinical ile (described in chapter 6).One day a community volunteer told me they had mental health services at KamwokyaChristian Caring Community (KCCC). I started getting treatment rom there in January 2005. I was due or my next appointment at Mulago (psychiatric hospital) on 19th January 2005, but I decided to go to KCCC because it is nearer.

I have seen a di erence, at KCCC. The drugs are always available and I have a community volunteer who is responsible or ollowing up and checking on my progress. She is a good woman. She is elderly and like a mother to me. She has a le in which she writes about me. They [KCCC] promise that when you recover, they can get you something to do, a job. (Beatrice Amongin li e story, Uganda Programme, 2005)


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OutcomesIncome earning or productive activity by people with mental disorders occurs

New skills, con dence and sel -worth amongst people with mental disorders and theiramilies are developed

Poverty levels o people with mental disorders and their amilies are reduced

Social status o people with mental disorders and their amilies is improved

What does it mean?We may be able to overcome mental illness, but we cannot overcome poverty, said awoman recovering rom illness. (India Programme, 2006)

I wish to go to school like my ellow pupils, but Im a raid o being called aw ul names. I eel very bad, it pains me to hear such names. (Fatuma Mohamed, Tanzania Programme 2006)

Mental disorders o ten have a devastating economic e ect on the whole amily. Conversely, again ul occupation not only reduces a amilys level o poverty but is also a signi cant actor insustaining recovery rom mental disorders . O equal importance is the positive impact purpose ulwork has on reducing stigma and acilitating reintegration into amily and community li e. Thesustainable livelihoods module acknowledges this reality and demonstrates that people withmental disorders and their amilies have the right and the capacity to be included in the processo economic development.

In practice, or adults recovering rom mental disorders, this means encouraging and supportingthem, their carers and amily members to evaluate their existing capabilities and potential,develop new skills and ultimately enter into employment or productive work . As programmestake place in low- and middle-income countries, where employment opportunities may alreadybe scarce, the module has the additional challenge o operating within these con nes.

SustainableLivelihoods5


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Sustainable Livelihoods

For many people with mental disorders, employment means more than the income they earn. It alsomeans regaining a sense o sel -worth and pride in onesel .


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Children with mental disorders ace similar barriers o stigma, discrimination and exclusion astheir adult counterparts. As they recover, they are also supported within this module, to beginor resume their education.

How does it happen?Assessment o livelihood opportunitiesA central eature o the sustainable livelihood module is identi ying available employmentor other productive opportunities to ensure that people recovering rom mental disorders,their carers and amilies have the best possible chance o accessing them. The type o in ormation collected could be on local acilities and services available, skills shortages inthe area, organisations that o er or could provide employment opportunities, micro- nanceorganisations, vocational-training institutions and locally-based work schemes run by localor national government. This in ormation is collected by the programme research o cer andis usually done in partnership with a number o other organisations. This inclusive approachensures that all available and potential opportunities are recorded and links with stakeholdersare established. Furthermore, these stakeholders o ten become more receptive to the needs o people with mental disorders as they are exposed to the di culties aced by them in achievinga sustainable livelihood.

Excerpt rom Kenya (Kangemi) baseline study

The Presbyterian Church o East A rica o ers computer training at minimal ee and St Joseph the Worker Catholic Church development program o ers dressmaking training,

carpentry, and computer training. Furthermore two major micro- nance institutions in thearea, Kenya Rural Enterprise Programme and Kenya Agency to Development o Enterpriseand Technology, o er loans to groups. Vocational-training institutions exist in the area.The Government o Kenyas Poverty Reduction Strategy Paper undamentally emphasiseseconomic growth as a way to raise income opportunities and improve the quality o li e o the poor. Constituency Development Funds, available at the constituency level and the Local Authority Trans er Fund available at the local government (ward) level can be tapped tospeci cally address the plight o people with a mental disorder. (Kenya Programme, 2006)

Home visitsHome visits acilitate a culture o work and sel -su ciency amongst people recovering rommental disorders and their amilies by providing encouragement and support, guidance andmentoring and in ormation on opportunities. They are a key link between the coordinatedactivities that take place in the programme and a persons daily li e. In this module, home visits

ocus on assisting people recovering rom mental disorders, their carers and amilies to improvetheir economic status and secure sustainable livelihoods. This is achieved through a processo consultation to establish the choices, aspirations and needs o the individual; providingin ormation on skills and training opportunities; and ensuring that suitable occupationaltherapy is accessed (where necessary).


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Once a easible choice has been made, a person is o ered support to become active. Broadly, thisencapsulates all orms o gain ul occupation, whether this is earning an income, undertakingproductive work or accessing education. Home visits can be undertaken by a number o peopleinvolved in the programme including community workers.

Making links with development organisations

In pursuing a sustainable livelihood, a person recovering rom a mental disorder may opt toreturn to a previous occupation or decide to pursue other options that require additional skillsor capital. To maximise possible avenues or gain ul employment, BasicNeeds builds links with

Vijaylakshmi in her shop in India


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stakeholders such as local development organisations, micro- nance and enterprise groupsand local and national government agencies and schemes.

These organisations receive training, education and awareness-raising activities to sensitise them

to the needs and abilities o people with mental disorders. In turn, people with mental disordersare encouraged to access the services (such as training programmes, loans, occupational skillsand business planning), that refects their needs. This approach ensures that the module as awhole can deliver a broad spectrum o opportunities enabling people with mental disorders topursue livelihood opportunities that they were previously excluded rom.

Amasachina Sel -Help Association is a local community-based organisation located in Tamale, Ghana, and its primary area o work is micro- nance. Amasachina workswith community-based groups that are involved in income-generation activities and isBasicNeeds partner organisation or implementing the Sustainable Livelihoods module. Amasachina now involves people with mental disorders and their carers in its credit schemes. The key aim o the joint e orts o the two organisations is to develop systems or the integration o people with mental disorders and their amilies into mainstream society through the provision o productive capital. (Ghana Programme, 2004)

Children are supported to access education through the sustainable livelihoods programme, Kenya


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Income-generating and productive activities There is a real diversity o employment and productive work that result rom this module. Atan individual level, people recovering rom mental disorders have returned to their previous

occupations, developed new skills, started businesses and entered into new pro essionsand livelihoods. At a collective level, sel -help groups and cooperatives have been ormedenabling people to access opportunities and pursue income-generating activities that areunsuitable or unavailable or individuals. These groups provide members with mutual supportand encouragement, access to micro-credit schemes, capital at avourable repayment rates,security, in ormation and a more power ul voice.

The examples below illustrate some o the income-generating and sustainable livelihoodactivities that have occurred through this module.

Sel -help groupsThe livelihoods programme in Mtwara is making progress through the 19 sel -help groupswith a total membership o 163. The sel -help groups have been specialising in goat and chicken nurture, gardening o vegetables, arming o rice, maize, pineapples, beans and sesame productions. Most o the sel -help group members have managed to support their

amily with some ood, which was not the case earlier. Capacity building in the case o Mtwarahas ocused on people with mental disorders and carers or building entrepreneurship and speci c skills training. (Mtwara, Tanzania Programme, 2007)

New business

Be ore he became ill, Venkatesh worked or thirty years in the weaving industry. He gaveit up and concentrated in overcoming his illness with the support o his amily. Followingtreatment and ongoing assistance rom one o BasicNeeds partners, Grameena AbyudayaSeva Samsthe (GASS), Venkatesh decided to set up a small business supplying snacksto travellers using the bus shelter in his village. He starts preparing the ood at 4.00 a.m.and sells rom 8.00 a.m. until noon. Trade has been good and he turns over about Rs.300[$7.50] each day, a modest sum but comparable to incomes o many people in the area.Most importantly, Venkatesh, describes himsel as having a completely new beginning. Heis con dent and contented, enjoying the relative reedom o the work that he does now.

Notably, the local panchayat has been instrumental in allowing Venkatesh to use the busshelter, which is a avourable situation or his business (India Programme, 2006)

Access to resourcesMr. Ddangu has received a bicycle through the sustainable livelihoods programme. Hehas already hired it out to a member o the community to go to school daily. He will be paid a daily amount o 1000 shillings [$0.60] or this and will use this money to start upanother livelihood project. (Uganda Programme, 2006)


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Returning to education Amatu [Fadilas mother] said that when she saw other children going to school, she elt disheartened that Fadila was at home. Hence, their appeal to BasicNeeds to support Fadilaseducation. Nashiru [her ather] came to the BasicNeeds o ce seeking nancial assistance

to enable them to send Fadila back to school. BasicNeeds supported him with an amount o 500,000 cedis [about $51] under its sustainable livelihoods programme. Fadila returned to school, to Future Leaders, an early Childhood Development Centre and now looks neat and more cheer ul than be ore. (Ghana Programme, 2005)

Therapy and income generation

Manel is a woman who has su ered rom depression, and a widow with children. Homegardening built up her con dence to work. She commenced pot cultivation o chillies,tomato, cabbage and carrots. She said this beauti ully growing garden gives me pleasure

A man tends to his crop and earns an income, Ghana.


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when I see it every morning. As a consequence o improving her con dence and skills, shestarted another income-generation activity. She was given training in making ekel broomswhich she has taken up as a livelihood. She sells these brooms at Rs 50 [$1.20]. She hascare ully collected the money and spent Rs 2500 [$63] or purchasing a tractor-load o metal or building her kitchen. (Sri Lanka Programme, 2006)

Entering into productive work Mohamed is a person with a mental disorder rom Mpekso village. Since starting medication,he now carries out productive activities or his amily. Thank god, ever since undergoingtreatment, I have been able to co-operate with others in doing homely manual activitiessuch as preparing coconut juice, rinsing utensils, doing some laundry and selling charcoal. And this, to me, is a pure sign o recovery as I never did something like that be ore (TanzaniaProgramme, 2006)

New skillsThe Tamale Tin Laayisi Horticultural Project trains interested people with mental disordersto acquire skills in vegetable gardening. The project provides an alternative source o livelihood or people with mental disorders. It has contributed to providing vegetables to the people o the Tamale metropolis, especially or two hotel restaurants. The management and marketing skills o people with mental disorders in the project are growing as they takecharge o selling produce themselves in the market and to the restaurants in town. (GhanaProgramme, 2006)


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Chapter 6

OutcomesExperience, insights and perspectives o people a ected by mental disorders become parto the mental health evidence base and new knowledge

Better understanding is gained o policies that a ect mental health and their practicalapplications in low- and middle-income countries

What does it mean?Research is embedded in the model or mental health and development and occurs throughout

a programmes implementation in three main ways. First, through participatory action researchmethods people with mental disorders generate and analyse data to evaluate the programmeinterventions and to make a direct contribution to policy applications. Second, outcome researchshows the actual changes that have occurred in the lives o people with mental disorders as aresult o interventions through the model. Finally, urther insights, through policy research, aregained into the external actors that a ect people with mental disorders. Taken as a whole, theanalysed data or evidence emerging rom these di erent but complementary research strandsare used to infuence and bring about change in policy, as evidence or a programmes e cacy,and to build a knowledge base.

How does it happen?Research methodsPrimary data is generated and analysed through the research methods described below.

Participatory action researchParticipatory action research orms a signi cant part o BasicNeeds research work and isintegral to a programme. The process involves cycles o data collection, analysis, eedback andreinterpretation with the outputs used to assess need and the e ectiveness o interventions. Datacollection occurs mainly in the eld and is a mix o qualitative and quantitative in ormation

Research6


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Research

(the speci c types o primary data used are addressed later on in this chapter). In addition to itsresearch purposes, the data orms the basis o statistical monitoring (described in chapter 7).

To ensure that people with mental disorders and other stakeholders are able to activelyparticipate in all stages o the research-analysis cycle, a range o di erent orums are used,including consultations, ocus groups, interviews and home visits.

The data emerging rom the eld is analysed against the themes o health status, treatmentapproach, health services, socio-economic status, care giving, community acceptance, programme

interventions and participation. Analysis occurs at di erent levels within the programme, startingat the eld with people with mental disorders and working its way up through partners andother stakeholders to the BasicNeeds programme sta . At each level o analysis, synthesizeddocuments rom the previous level are used. This process helps to build up a comprehensivepicture o outcomes and emerging issues and results in an annual research report.

Participatory action research employs a technique called participatory data analysis, developedby BasicNeeds to operate in a mental health and development setting. Lead by an animatorand recorded by a process writer, the purpose o the participatory data analysis is to developlocal-level ndings and operational policy recommendations or local implementation. This is

Participatory action research in Sri Lanka


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Chapter 6

achieved by bringing together people a ected by mental illness and others in a programmeto analyse data that they have played an active role in generating. Participatory data analysis isused wherever resources permit.

Instructions given during a participatory data analysis session. Count and write down the number o people with mental disorders against the major

occupations they were in be ore their illness.

Also indicate whether they are still in the occupations they were in be ore their illness.

Count and write down the number o people with mental disorders against thehousehold chores they are able to do.

Group the responses o people with mental disorders into those who earn in cash,those who earn in kind and those who earn in both cash and kind.

(Ghana Programme, 2007)Outcome studiesOutcome studies build on the data generated through participatory action research anduse it to evaluate the e cacy o the model outcomes. The purpose o this type o evaluativeresearch is to evidence how e ective the interventions o the model are in bringing aboutreal change in the lives o people with mental disorders. In order to do this, these studies userepresentative samples to investigate speci c outcomes around topics such as integration,treatment and economic sustainability. Outcome studies draw on individual and clinical les

or data (described later in the chapter) and use additional sources where required.

Policy studiesPolicy studies involve speci c, one-o pieces o research that ocus on a particular set o issues that signi cantly a ect intervention quality or model outcomes. O ten the reason orcommissioning a study will have resulted rom issues highlighted through participatory actionresearch and the outcome studies. The data required or a policy study is not available rom thesources that participatory action research and outcome studies draw rom. As a result, targetedresearch to generate speci c data or analysis o the subject in question takes place.

Excerpt rom a recent policy study on the availability o psychotropic drugs in 6 low- and

middle-income countries where BasicNeeds has programmes: There is an absence o speci c policies or the supply o psychotropic drugs.

Distribution o these medicines to health service points is supply-driven rather thandemand-driven resulting in skewed availability and shortages

Lack o trained sta results in poor procurement o medicines.

There is no separate budget or psychotropic drugs so unds are used to buy other medicines.


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Research

Psychotropic drugs were o ten not available ree o charge and purchasing them waso ten prohibitively expensive or poor amilies.

(BasicNeeds Policy and Practice Directorate, 2007)

Baseline studyA baseline study is a review o the situation o the programme area speci cally looking at thelives o people with mental disorders and all o those actors in the external environment thata ect them. Normally undertaken at the start o a programme in a speci ed geographic area,the baseline study helps to shape subsequent development on the ground. Furthermore, thestudy is used as a point o re erence against which progress and change can be measured.

Primary dataPrimary data collection is an on-going process, which involves complete documentation o

the lives o people with mental disorders, their carers and amilies, via a number o ormats. The main types o primary data collected through a programme are listed below. These areanalysed through participatory action research and outcome studies.

Li e storiesLi e stories are a way in which the lives and experiences o people with mental disorders canbe recorded, as told by them. Li e stories serve multiple purposes. They provide meaning ul

A woman tells her story to a community worker in India


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Chapter 6

Individual les are a crucial primary data source

insights and enable greater understanding about not only the reality or that person but that o his or her amily and community too. They are also used to highlight the issues they ace, whichin turn are a starting point or urther research.

Extract rom Hakmanys li e story

In 1996, when she was studying in grade ve in primary school, she elt her head rotating

heavily. She had vertigo, high ever and seizures. She was re erred to Phonhong District Hospital located in Vientiane Province by her uncle with whom she lived or a year. Her physician diagnosed her with meningitis.

She described her seizures very well. One thing I remembered well was the eeling that my legs and arms were becoming progressively heavy and I was suddenly alling down.

A ter that, I was unconscious. I do not remember what happened. When I woke up a ter theconvulsion, I elt lost; my memory had gone away... I could not talk. I was made to lie downon the bed, drowsy and con used, or at least hal an hour. I was hospitalised or two weeks.(Lao PDR Programme, 2007)


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Research

Individual lesEvery person with a mental disorder who is involved in the programme will have an individual le.Such les are a actual account o the individual, including in ormation on their background and

history; their medical in ormation, including type o mental illness, symptoms and treatment;and their amily situation. The le also documents the interventions o the programme andsigni cantly, the changes that are un olding in their lives.

Clinical FilesAs with individual les, clinical les are kept or every person with a mental disorder participatingin the programme. They contain in ormation solely relating to their medical history and area record o all clinical interventions that have occurred. The in ormation within the le iscon dential and is maintained and updated by a mental health pro essional.

Process documentsAll eld consultations and ocus groups involving people within the programme are recordedvia process documents. To ensure accuracy, a trained process writer has the sole task o notingdown what is said and happens during a gathering. Process documents are an important sourceo data, because they not only describe, word- or-word, what has been said and by whom, butalso capture other revealing in ormation such as the atmosphere in the room and the bodylanguage o participants.

Uses o evidence The research methods described above generate a body o evidence that is used or many

purposes.

A process writer records everything that is being said at a consultation meeting in Kenya


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Chapter 6

In uencing policy and advocacyAt a local level, people with mental disorders and other stakeholders are able to make a directcontribution when identi ying problems and solutions and refecting on how success ul any

intervention has been. This cycle ensures that the research is highly responsive and results in realchange on the ground. For example, a group o people with mental disorders analyse the datathey generate to evidence that the provision o mental health care in their area is unsatis actory.

This evidence is used to advocate or speci c change, such as an increase in the requencyo clinics or access to more resources rom the local government. The response by the localgovernment is then analysed to see how success ul it has been and whether urther changeis necessary. This process o evidencing need, demanding change and then refecting on theintervention provides people with mental disorders and other stakeholders with the necessaryskills to advocate success ully. These skills can then be applied at a regional or national level as

people with mental disorders and other stakeholders gain the con dence to use them in moredemanding arenas. The method is the same but the scale and impact is ar greater.

Excerpt rom Kenya Impact Report

The National Mental Health Policy was reviewed with the participation o BasicNeeds and partners. Experiences in community mental health were incorporated into the nal dra t.Being a member o the dra ting committee positions BasicNeeds Kenya prominently in thedevelopment o attendant legislation, the rst one being the review o the Mental Health

Act, which is not current in its outlook and stipulations. (Kenya Programme, 2008)

Evidencing e cacy and challenges The knowledge gained rom the research discussed above contributes to demonstrating thee cacy o and the challenges aced when implementing the model or mental health anddevelopment. Firstly, the evidence is used to show how e ective particular interventionsare in relation to people with mental disorders. This work enables BasicNeeds to show togovernments, unders, partners and others involved in a programme, the validity, importanceand cost e ectiveness o the models interventions. Secondly, the research allows BasicNeedsto evidence the challenges that a programme aces, enabling it to learn rom the work alreadyoccurring and improve upon it in the uture. This approach ensures that newly-established

programmes can avoid making similar mistakes to those already in existence and put in placemeasures to tackle potential di culties be ore they arise.

Excerpt rom research report

The major problem aced by people with mental disorders in every programme area was thelack o mental health services within their locality. This is evident in every process document written or initial consultation workshops. (Sri Lanka Programme, 2006)


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Research

Knowledge base The evidence generated through this module, contributes to a signi cant knowledge base thatserves two main purposes. Firstly, the evidence includes the views, experiences and insights

o people with mental disorders. This helps to give people with mental disorders a voice todemand that they be included in decisions that directly impact upon them. Secondly, theevidence rom which the e cacy o interventions can be assessed is drawn rom di erent low-and middle-income countries across the world. This helps to promote a developmental ratherthan a clinical approach to mental health.


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Chapter 7

OutcomesOrganisations implementing the model are robust, capable and sustainable

A mental health and development programme is implemented to the highest possiblestandard

What does it mean? To deliver these separate but overlapping modules o the model simultaneously, o ten involvingnumerous partnerships and with the ull involvement o people with mental disorders, is a

complex task. This module ensures the e ective implementation and smooth running o a programme as a whole by establishing and maintaining partnerships; ensuring e cientproject management, such as budgeting, reporting, monitoring and evaluation; and providingadequate resources. In short, the management and administration module is the glue thatholds the model together.

All organisations have a duty to carry out numerous unctions in order to stay healthy. Thissection is not intended to be a description o the standard requirements expected o everyorganisation. Rather, it ocuses on those management and administrative tasks speci c torunning a mental health and development programme.

How does it happen?FundraisingWithout unding, putting the model or mental health and development into practice wouldnot be possible. Funding is secured at the start o the programme by

mental health and development a model in practice - kamha.org

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