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«User empowerment in mental health – a statement by the WHO Regional Office for Europe Empowerment is not a destination, but a journey With the ...»

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User empowerment

in mental health

– a statement by the WHO

Regional Office for Europe

Empowerment is not a destination,

but a journey

With the support of the European Commission Health and Consumers Directorate-General

Historically, people with mental health problems have lacked a voice. Neither they nor

their families have been involved in decision-making on mental health services, and

they continue to be at risk of social exclusion and discrimination in all facets of life. In a

mental health context, empowerment refers to the level of choice, influence and control that users of mental health services can exercise over events in their lives. The key to empowerment is the removal of formal or informal barriers and the transformation of power relations between individuals, communities, services and governments. This statement specifies the action to be taken to strengthen user and carer empowerment in mental health and outlines the objectives of the Partnership Project on User Empowerment in Mental Health by the WHO Regional Office for Europe and the European Commission.








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© World Health Organization 2010 All rights reserved. The Regional Office for Europe of the World Health Organization welcomes requests for permission to reproduce or translate its publications, in part or in full.

The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement.

The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters.

All reasonable precautions have been taken by the World Health Organization to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either express or implied.

The responsibility for the interpretation and use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising from its use. The views expressed by authors, editors, or expert groups do not necessarily represent the decisions or the stated policy of the World Health Organization.

CONTENTS Page Contributors……………………………………………………………………………………………..

Empowering individuals, empowering communities

User and carer empowerment in mental health

Users’ and carers’ perspectives on empowerment

Users’ perspective

Carers’ perspective

Taking action for user empowerment in mental health

Societal/structural level

Service provision and development

Education and training of professionals, users, carers and the community..........8 Individual level


Annex 1 WHO–European Commission partnership project on user empowerment in mental health


Contributors The statement has been written by Anja Baumann, Technical Officer for Mental Health, World Health Organization Regional Office for Europe, with input from the members of the advisory group to the WHO-EC Partnership Project on User Empowerment in Mental Health. Anja Baumann and Matt Muijen, Regional Advisor for Mental Health, World Health Organization Regional Office for Europe, edited the text.

Members of the Advisory Group to the WHO-EC Partnership Project on User

Empowerment in Mental Health:

Kristiina Aminoff, The National Family Association – Promoting Mental Health in Finland, Helsinki, Finland Wilma Boevink, Trimbos Institute, Netherlands Institute of Mental Health and Addiction, Utrecht, Netherlands David Crepaz-Keay, Mental Health Foundation, London, United Kingdom Nicolas Daumerie, WHO Collaborating Centre, Lille, France Claude Finkelstein, Féderation Nationale des Associations d’usagers en Psychiatrie – FNAPSY, Paris, France Dolores Gauci, Global Alliance of Mental Illness Advocacy Networks - GAMIAN Europe, St Venera, Malta Patrick Geoghegan, South Essex Partnership University, National Health Service Foundation Trust, Wickford, United Kingdom Mrs Catherine Gonzi, Marsascala, Malta Hana Horka, DG European Comission, Health and Consumers Judith Klein, Open Society Institute, Budapest, Hungary Kevin Jones, European Federation of Associations of Families of People with Mental Illness – EUFAMI, Leuven, Belgium Malgorzata Kmita, Mental Health Europe, Brussels, Belgium Oliver Lewis, Mental Disability Advocacy Centre, Budapest, Hungary Lorenza Magliano, Second University of Naples, Naples, Italy Andrew McCulloch, Mental Health Foundation, London, United Kingdom Erik Olsen, European Network of (ex-)Users and Survivors of Psychiatry - ENUSP, Copenhagen, Denmark Geoffrey Reed, World Health Organization Julie Repper, The University of Nottingham, United Kingdom Jean-Luc Roelandt, WHO Collaborating Centre, Lille, France Peter Ryan, Middlesex University, London, United Kingdom Maria Jesús San Pío Tendero, Spanish Confederation of Groupings of Families and People with Mental Illness - FEAFES, Madrid, Spain Jürgen Scheftlein, European Commission, DG Health and Consumers

–  –  –

Empowering individuals, empowering communities “Empowerment” is a core concept of WHO’s vision of health promotion. Its importance in disease prevention and health promotion is well recognized in the Declaration of Alma-Ata (1) and the Ottawa Charter on Health Promotion (2). One of the six key messages to guide action within the European Strategy for the Prevention and Control of Noncommunicable Diseases (3) is that “people should be empowered to promote their own health, interact effectively with health services and be active partners in managing disease”. And also the Mental Health Declaration for Europe (4), the Mental Health Action Plan for Europe (5) and the European Pact for Mental Health and Wellbeing (6) identify the empowerment of people with mental health problems and those who care for them as key priorities for the next decades.

Empowerment needs to take place simultaneously at the population and the individual levels. Empowerment is a multidimensional social process through which individuals and groups gain better understanding and control over their lives. As a consequence, they are enabled to change their social and political environment to improve their health-related life circumstances (7).

Being included in the society in which one lives is vital to the material, psychosocial, and political empowerment that underpins social well-being and equitable health (8). As health is a fundamental human right, empowerment of patients and their families, friends or other informal carers is a societal task that encourages all communities, employers, trade unions, schools and colleges, voluntary organizations to respect health and well-being of individuals and populations and act in ways that empower individuals and groups to respect their own and other people’s rights to health and well-being.

At the individual level, empowerment is an important element of human development. It is the process of taking control and responsibility for actions that have the intent and

potential to lead to fulfilment of capacity. This incorporates four dimensions:

1. self-reliance

2. participation in decisions

3. dignity and respect

4. belonging and contributing to a wider community.

For the individual, the empowerment process means overcoming a state of powerlessness and gaining control of one’s life. The process starts with individually defined needs and ambitions and focuses on the development of capacities and resources that support it. The empowerment of individuals is intended to help them adopt self-determination and autonomy, exert more influence on social and political decision-making processes and gain increased self-esteem.

Communities can support individuals in this process by establishing social networks and mobilizing social support; together, these promote cohesion between individuals and can support people through difficult transitions and periods of vulnerability in life (3).

Statement on the Meaning of Empowerment of Mental Health Service Users and Carers page 2 The empowerment of communities comprises a higher degree of individual empowerment among the members of the community, a stronger sense of belonging to the community, development of and participation in political activities, leadership of decision-making process and access to resources for the benefit of the community (9,10).

User and carer empowerment in mental health In a mental health context, empowerment refers to the level of choice, influence and control that users of mental health services can exercise over events in their lives. The key to empowerment is the removal of formal or informal barriers and the transformation of power relations between individuals, communities, services and governments. Power is central to the idea of empowerment, and one important element

of empowerment strategies is (11):

… challenging control and social injustice, through political, social and psychological processes that uncover the mechanisms of control, the institutional or structural barriers, the cultural norms and social biases, and therefore enable people to challenge internalized oppression...

Historically, people with mental health problems have lacked a voice. Neither they nor their families have been involved in decision-making on mental health services, and they continue to be at risk of social exclusion and discrimination in all facets of life (12). Disempowerment of mental health service users operates at every level. At the societal/structural level, stigma is present in all societies and there are numerous barriers to full access to work and other social activities. At the service organization and delivery level, people using mental health services are poorly informed, and often poorly consulted or poorly treated. At the individual level, the experience of mental health problems can have lasting effects on a person’s sense of identity and self-worth – the internalization of stigma.

There is also evidence that lack of influence or control can lead to poor health outcomes; conversely the ability to exercise control and influence, even where high stress is present, can act as a protective factor against levels of disease risk.

Powerlessness has emerged as a key risk factor in the etiology of disease, and evidence from a number of different fields suggests that empowerment not just is a set of values but also leads to positive outcomes. These outcomes include increased emotional wellbeing, independence, motivation to participate and more effective coping strategies.

Thus, enhancing the empowerment of mental health service users leads to tangible biological, psychological and societal benefits. These include enhanced self-esteem, a greater sense of connectedness to local social groups and meaningful engagement in society.

–  –  –

led evaluation of services, the right for everyone to be recognized as a person before the law without discrimination, the destigmatization of mental disorders, and more inclusive and respectful services with user and carer involvement (13). In the following these key issues are described from user’s and carer’s perspectives.

Users’ perspective An empowerment approach promotes the recognition and development of the service

user’s strengths, resources and skills (14):

To be committed to an empowerment agenda is to be committed to identify, facilitate or create contexts in which heretofore silent and isolated people, those who are outsiders in various settings, organizations and communities, gain understanding, voice and influence over decisions that affect their lives.

Users’ and carers’ groups have formulated various key attributes of empowerment (15), some of which can lead to recommendations for action on user and carer empowerment at different levels.

Decision-making power Mental health professionals sometimes assume that service users and their families lack the ability to make decisions, or to make correct decisions. Services therefore sometimes adopt the paternalistic stance of limiting the number or quality of decisions that users and families may make. Without support in making decisions, users are kept in long-term dependency relationships. People cannot become independent without the opportunity to make important decisions about their lives.

In some circumstances, the barrier of denial of legal capacity is a key obstacle to decision-making: this legally prohibits people from making decisions. People with mental health problems should enjoy legal capacity on an equal basis with others in all aspects of life, and states have an obligation to provide support to people who require assistance in making decisions (16).

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