Empowerment, Disclosure, Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion

"Empowerment, Disclosure and Group Identification:

Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’

Prepared by Neasa Martin 1/25 3/27/13




The National Network for Mental Health (NNMH) is the only non-diagnostic

consumer/survivor driven mental health organization in Canada that is national in scope. Its

purpose is to advocate, educate, and provide expertise and resources that benefit the

Canadian consumer/survivor community. Core to its mandate is a commitment to foster

networking, inclusion, partnerships, and mutually respectful alliances. Using a ‘grassroots’

approach to community development the NNMH helps bring individuals and organizations

together to share information and find common ground. By working collectively, consumers

are empowered to remove the barriers to full citizenship and achieve a healthy, connected

and good quality of life.

Over the decades, consumers across Canada have played a leading role in pursuing

systemic change and advancing important concepts of recovery, peer-support, cultural

safety and consumer-driven economic development and employment initiatives. 1, 2 , 3

Consumers have intuitively understood that the way to reduce stigma and discrimination is

through protesting inequality, advocating for equal treatment, educating influential people on

the human experience of mental health problems (not mental illnesses), along with

encouraging positive personal contact between peers and with the public. Consumers also

understand that to achieve sustained and meaningful change they must play a leadership

role. “Nothing about us without us” emerged from the social disability movement as a

rallying call to consumers to ensure partnership and not paternalism drives decision-making

on issues central to their lives. However, this consumer leadership role is undertaken almost

exclusively on a volunteer basis, with limited coordination and in an environment of unequal

power and influence. A lack of financial resources for consumer-focused organizations has

meant that this voice is muted and unable to participate as equal and active partners in

critical change processes. The ‘experiential expertise’ of consumers has not held equal

sway with policy planners in the face of professionally driven, peer-reviewed, evidence-

based research. 4 , 5 However, emerging research is increasingly confirming what

consumers have long known: that recovery is possible and is enhanced by peer support.

That peer support is an effective and efficient resource, which fosters recovery and protects

people from self-stigma, and that addressing self-stigma is critical to recovery. Consumer-

led support plays a contributing role in reducing self and public stigma, in supporting

disclosure, and empowering consumers through positive group identification.

A changing Canadian landscape

Canada is at a critical ‘tipping point’ on mental health issues. The establishment of the

Mental Health Commission of Canada has increased visibility and interest on mental health




issue across government and in the media. A national mental health strategy 'Towards

Recovery and Well-being: A Framework for a Mental Health Strategy for Canada’ and stigma

reduction strategy is in development that will provide a blue print for shaping mental health

policies of provincial governments and territories for decades to come. Consumers are

pleased that mental health issues are taking a more dominant place in the public discourse

and has ‘come out of the shadows at last’. Consumers want action that will improve access

to recovery-focused services (including consumer led supports), create a more inclusive

society, protect their human rights and build equal access to resources and support full

citizenship. In a national stakeholder survey, summarized in 'Towards Recovery and Well-

being: A Framework for a Mental Health Strategy for Canada’, 6 Canadians agree that

stigma is a critical issue and that consumers must play a leading role in program

development and delivery. However, concerns are also raised that the existing consumer

networks have yet to be engaged in any significant manner in the work of the Commission

and there is no strategic plan in place to ensure consumers play a leading role, particularly in

relationship to program development on stigma and discrimination on which they hold a high

stake and considerable expertise.

Based on emerging research, and the expert advice of international leaders, transformative

change begins with the robust engagement of people living with mental health problems/

service users in addressing stigma, discrimination, and promoting recovery. 7, 8, 9 The

NNMH seeks to build an evidence-base, built on existing research, to strengthen this

position and provide a rationale for consumers as partners in this change process. This

report provides a high level review on stigma research and summarizes the evidence on the

importance of peer support, empowerment, and group identification in reducing self-stigma,

discrimination, and enhancing social inclusion. 1 A review of the scientific peer-reviewed

journals and grey literature in the policy, program and practice realms informs this report.

1 A summary of this report is available as a poster board on the NNMH website.




UNDERSTANDING STIGMA & DISCRIMINATION

Stigma and discrimination is broadly recognized as a major issue for people with mental

health problems and is one of five key priorities for the MHCC. 10 According to Graham

Thornicroft stigma represent a mark of shame or degradation and is ‘any attribute, trait or

disorder that marks an individual as being unacceptably different from ‘normal’ people with

whom he or she routinely interacts, and that elicits some form of community sanction.’ 11 Jeff

Cheverton, Executive Director of the Queensland Alliance describes this further “stigma is at

its core the mark of difference of those things we associate in our society as ‘signifying

madness’. People who are trolling the garbage dumps, panhandling on the street or act

impulsively have come to be defined as ‘mad’. The business man walking down the street in

a suit is not identified as ‘mad’ although he may very well meet the defined criteria for a

mental illness. The result is that we hold a skewed understanding of what madness looks

like. Discrimination is the different way we treat people who we define as ‘mad’.” 12 It is

being marked as ‘other’ that drives many people towards secrecy in order to avoid being

identified as mad.

STIGMA’S IMPACT

Stigma’s sting is felt in terms of lost relationships, opportunities denied or peoples

unwillingness to pursue life’s goals for fear of rejection or failure. Stigma interferes with help

seeking through label avoidance, reduced adherence to treatment, diminishes hope and

impedes recovery. It is felt in the pessimistic attitudes of health care providers who are more

focused on deficits and disability than strengths and competencies. 13 , 14 Although widely

acknowledged as an issue of concern, stigma is rarely addressed with clients in the clinical

setting. It continues to be experienced long after symptoms of illness resolve suggesting

that stigma reduction through better treatment as too simplistic an approach. 15

Research shows that stigma leads to:

• High rates of unemployment and lower educational achievement; 16, 17 leading to

persistent poverty which increases the risk for mental health problems. 18

• NIMBYism – through denial of housing and rejection by neighbours. 19

• Being the object of ridicule, derision, and being depicted within the media as violent,

impulsive, and incompetent. 20, 21, 22, 23

• People with mental health problems are more likely to be the object of violence than its

perpetrator. The myth of violence persists despite evidence to the contrary. 24




• Violation of human rights i.e. the use of seclusion, restraints, involuntary admissions,

and forced treatments, 25 denial of health, life and mortgage insurance, restrictions in

travel, on holding public office and the loss of personal and parental rights. 26

• People with mental health problems receive poorer health care, less diagnostic testing,

fewer medical procedures 27 , live with more chronic illnesses and have significantly

shortened life spans. 28, 29

• Stigma and discrimination is a barrier to recovery, results in a lack of choice and limited

access to community, rehabilitation, and treatment supports. 30, 31

• Reduced policy attention and low funding of services by governments despite

increased work and health related costs, which exceed cancer and cardio-vascular

disease. 32, 33

• Greater emphasis on ‘risk containment’ and the criminalization of people with mental

health problems. 34, 35, ,36, 37

• Worsens existing symptoms and lead to relapses in mental health problems and

increases the risk for suicide. 38, 39, 40

• Harms caregivers’ health, economic, social, and emotional well-being. 41 , 42, 43

Beyond the personal impact of stigma, mental health problems have a broader social cost

making this a critical issue to address. It is considered the leading cause of 'healthy life' lost

due to disability. The World Health Organization recognizes psychiatric disability as the

fastest growing cost sector for occupational disability. A conservative estimate of the

economic cost of poor mental health is 3% - 4% of GDP in developed nations. 44 There are

significant economic losses identified due to absenteeism; reduce productivity or

‘presenteeism’, increased morbidity, and higher rates of mortality. The annual economic

cost in Canada of mental illness is estimated at $51 billion. 45

According to Corrigan stigma takes on many forms:

1) Public stigma: the harmful effects to people when the general population endorses the

prejudice and discrimination of mental illness.

2) Self-stigma: the harm that occurs when people internalize negative stereotypes impacting

self-esteem (“I am not worthy!”) and self-efficacy (“I am not able”) leading to self-blame,

hopelessness and helplessness.

3) Label avoidance: avoid stigma by not seeking mental health services from which labels




are often obtained. (“I am not going to see a psychiatrist; people are going to think I am

nuts!”). 46

4) Courtesy stigma: the devaluation by association experienced by caregivers and

professionals associated with people who have mental health problems. 47

Self-stigma is increasingly recognized in the research as a critical issue to address because

it results in people not pursuing opportunities, advocating for entitlements or accessing

mainstream activities. Self-stigma leads to social isolation and the breakdown in support

from family and friends. 48 Most promising is that those elements, which protect people

from self-stigma, are also the means by which stigma and discrimination is combated in the

public realm.

WHAT CAUSES PUBLIC STIGMA?

Stigma is found to arise from three inter-related problems:

1) A lack of knowledge of mental health problems leading to ignorance.

2) Ignorance leading to the formation of negative attitudes or prejudice and when knowledge

is replaced by myths.

3) Discrimination, is the behavioural result of prejudicial attitudes, results in people excluding

or avoiding contact with those who are identified as mentally ill.

Link and Phelan describes a four-step process for stigma formation. 1) Labeling: when key

personal characteristics are recognized by others as conveying difference; 2) Stereotyping:

there is a linkage of these differences to undesirable characteristics; 3) Separating: a

distinction is made between the ‘normal’ group and the labeled group; and 4) Status loss:

leading to discrimination, devaluing, rejecting, and excluding the labeled group.

Discrimination is ‘dependent on differences in ‘social, economic and political power’.49

The emerging trend internationally is to see discrimination as a human right issue not an

illness based phenomena. The goal of action is to achieve equal treatment and greater

access to service and resources and not to change attitudes.

THREE-PRONGED SOLUTION:

Research suggests that this negative cycle can be interrupted by: providing education on the

experience of having a mental health issue and sharing the personal experience of

discrimination – not education to improve knowledge of mental illness; by increasing positive




contact with competent, capable people who to challenge stereotypes attitudes; and by

promoting human rights and protesting against acts of discrimination. 50

1) Education - to build understanding

The research evidence supports that people with a lived experience of mental health

problems are the best agents for delivering education. However, information alone has not

been found to positively change attitudes or result in positive shifts in behaviour. Ignorance

of mental illness does not appear to drive negative public opinions. In fact, researchers have

found that the more educated the public was about mental illness the greater their desire for

social distance. 51 Research has also found that positive shifts in attitude are not necessarily

correlated to desired behavioural changes or improved quality of life. 52, 53, 54 However,

personal contact plus education can improve knowledge uptake. 55 Education is best when

it is multi-faceted and includes challenging common myths (dangerousness, incompetence,

impulsivity). 56, 57 Stories that touch the heart and mind of the listener increase positive

emotional connection and have a long-lasting effective when: they describe the challenges

encountered and discrimination faced; share ways difficulties were overcome and what

helps people to cope; and when hope and optimism of recovery are key messages. 58, 59

Education is best when it promotes respect, rights, and a shared responsibility of reducing

discrimination. In addressing stigma, there is no ‘general public’, and education is most

effective when it is targeted, segmented, delivered locally and the messages are audience-

specific (i.e. police, medical students). 60 The use of creative art, theatre, comedy, photo-

story, poetry, first person-narratives etc. helps to create a strong emotional response that

encourages reflection and helps shift public attitudes.

2) Positive contact

Direct contact is consistently identified as the most effective means of producing long-

lasting and sustained improvement in attitudes. Positive contact is found to increase

empathy, understanding, and leads to pro-social behaviour. 61 It is most effective when:

• There is a relationship of equal status (peer to peer);

• Contact occurs in a context of active cooperation and the pursuit of shared goals;

• There is opportunity for interaction and discussion;

• There is a coexisting relationship such as co-worker, friend, neighbour etc.;

• Both the message and messenger are culturally appropriate and relevant to the

audience;

• Contact disabuses people of common myths (dangerousness and impulsivity);




• The presenter is viewed as ‘credible’ and challenges stereotypes (incompetence and

incapacity). 62

3) Protest

Protesting inequalities and demanding equal rights and entitlements are also found to be

effective in reducing discrimination and promoting personal empowerment. Protest includes

challenging negative media and seeking systemic changes at a policy, practice, and

legislative level. Examples include: the use of ‘Media Watch’ programs, legal challenges,

and the use of human rights complaints mechanisms. Protest also builds a sense of group

identification, self-efficacy, and rightful entitlement core to enhancing personal and group

empowerment. However, protest can be a double edge sword and can increase public

stigma. When used to suppress negative thoughts can result in a rebound effect. For

example emphasizing mental illness is not connected to violent behaviour may inadvertently

strengthen the connection in the audience’s mind. 63 Taking a balanced approach of using

both rewards (awards, social marketing campaigns) and protest is found to achieve the best

outcome. Protest is felt to be most effective when it is incremental in nature, creates a

dialogue where education can take place with the target audience, seeking clear redress and

cessation of offending actions, and ultimately leads to the formation of an ongoing

partnership. 64

FRAMING MATTERS – “Illness like any other” approach hasn’t worked

A common approach to addressing public stigma has been educational efforts to increase

the publics’ understanding of ‘mental illness’ and bring it into closer alignment with medical

opinion. The underlying assumption is that this approach would lessen the perception of

personal responsibility for mental illness based on moral weakness or character failings. The

reasoning goes that if mental illness are seen to be caused by factors outside of the

individual’s control, then they are not responsible and a well-informed public would be more

accepting and understanding towards people with mental illnesses. At the same time the

use of direct marketing to customers by the pharmaceutical industry has also resulted in the

ubiquitous presence of ‘public education’ campaigns that promotes a bio-medical framing of

mental illnesses as a disease for which treatment - medications – are effective. However,

the “illness like any other” approach to reducing stigma has not worked as intended and has

been found to increase stigma and discrimination. Faming mental health problems as

biologically based, genetically influenced, chemically medicated diseases increases public

fears, and social withdrawal. A ‘disease model’ educational approach increases the belief

that people with mental health problems are incapable of exerting control, judgment, or




reason. 65 This approach has been found to strengthen the link between violence,

incompetence, and impulsivity. The result is a public more tolerant of coercive treatment, a

decreased belief in the capacity to recovery, and a desire for greater social distance. Stigma

is reduced when less emphasis is placed on limitations, disability, chronicity, morbidity, and

mortality. Less emphasis needs to be placed on medications, and hospitalization and

stigma is reduced when services are provided in the community. There is also more public

acceptance when there is government funding for supports and services. 66, 67, 68, 69, 70, 71

Conversely, there is less stigma when mental health problems are framed as part of our

shared humanity and the natural consequence of a certain set of circumstances. 72, 73 Given

this emerging research caution is necessary in how mental illnesses are framed in both

public education and in clinical setting. 74, 75 Attention needs to focus on addressing the

stereotypes of unpredictability and dangerousness because these are most closely

associated with a desire for social distance. 76

TAKE A HUMAN RIGHTS FOCUS

The emerging international trend in stigma and discrimination programming is to focus more

on reducing discrimination that attempting to change public attitudes. Discrimination frames

the issue as a systemic, social, and political phenomenon and not as an individual health-

related issue. The historic focus on ‘stigma’ as the critical element of intervention is felt by

many to set the prejudice towards people with mental illness apart from other forms

discrimination like racism, homophobia, or sexism. 77 A focus on discrimination helps to

bring the prejudice towards mental illness into closer alignment with the approach of the

broader disability community. Disability in this context is not seen as the consequence of

the symptoms of illness but the barriers erected by the broader society that limit social

inclusion. The locus of change is then external to the individual and requires proactive steps

to remove barriers and create structural and policy enablers to support inclusion. 78

This does not mean that stigma, particularly self-stigma, is ignored. An approach focused

on discrimination makes clear that the ultimate endpoint of action is to attain equal treatment

and equitable access to services and resources. From a broader policy planning

perspective, applying a discrimination lens makes program goals and objectives more

measurable and strengthens the ability of researchers to clearly evaluate the outcomes of

interventions in ways that are meaningful to consumers. For example, it is not important to

assess whether an employer would hire someone with a mental health problem but whether

he or she actually does. 79, 80 It provides policy makers with broader recommendations for

action including: addressing human rights; civil liberties; health and social service




transformation; policy; and legislative changes. Liz Saycer, a leading disability policy expert

states “Initiatives to reduce discrimination need to make use of the iron fist of law with the

velvet glove of persuasion. 81 Although legal redress is considered a blunt instrument,

legislation does serve as a powerful deterrent. Graham Thornicroft recommends drawing on

national Human Rights Acts, Disability Rights Legislation, the Universal Declaration of

Human Rights and existing covenants and charters to provide both a legal framework and

the moral authority for reducing discrimination. Government legislation can impose a public

sector duty to promote equality of opportunity. 82 Coordinated planning to improve the

protection of human rights can also be achieved by bringing together organizations with a

shared interest and responsibility for reducing discrimination, an approach recently

undertaken in New Zealand. 83

MANAGING SELF-STIGMA

There has been very little research undertaken to understand the mechanism by which self-

stigma is formed or its harm mitigated. Nor has self-stigma been a focus of attention within

the clinical setting. Given its significant impact on peoples lives it is becoming an area of

greater research focus. Those strategies that are found to have the greatest impact on

reducing public stigma (education, contact and protest) have also been found to play a

complimentary protective and healing role in addressing self-stigma. Empowerment,

inclusion in planning processes, group identification and making meaning

of challenging mental health experiences helps to prevent self-stigma, encourages

disclosure and supports recovery. Research and program experts agree that a robust anti-

stigma and discrimination reduction strategy needs to include mechanisms to foster

disclosure, nurture empowerment, support group identification, and encourage advocacy

and protest.

What is self-stigma?

Self-stigma is the way in which people internalize negative social stereotypes. People who

live in a culture that holds widespread negative beliefs about mental illness come to

anticipate, and accept attitudes that reflect devaluation and discrimination. Common

stereotypes include: being to blame for ones illness; incapacity and incompetence; and

dangerousness. 84 Research reveals that the more people are aware of these prejudicial

beliefs and cultural devaluation, and the more they agree and identify with them, the greater

the degree of self-stigma, emotional and psychological distress, depression and decreased

sense of well-being. 85, 86 Pat Corrigan describes three components in the formation of self-




stigma: 1) having an awareness of negative cultural beliefs; 2) agreement with these

stereotypes (“people mental illness are to blame for their illness, are incompetent or

impulsive”) and 3) the application of these stereotypes to oneself. (“I am responsible… I am

incompetent”). Self-stigma leads to self-limiting behaviour, which is negatively re-enforcing

(“Why try… I won’t succeed anyway…. I am a failure”). This negative cycle lessens self-

esteem and self-efficacy and is positively associated with a failure to pursue work or

independent living, lower quality of life and goal attainment. 87, 88 Self-stigma results in a

fear of intimacy, feelings of deep shame, anxiety, and depression and increased self-blame.

It destroys hope, leads to distrust of ones self and others, feelings of worthlessness, retards

healing, and recovery, and results in a fear of exposure. Secrecy and an unwillingness to

self disclose leads to isolation and cuts people off from finding meaning and purpose in their

experience. 89 The most damaging stereotype appears to be the belief that people are

personally responsible for their illness. This leads others to feel a decrease in empathy and a

greater acceptance of structural discrimination. 90 Breaking the connection of personal

responsibility in ways which do not emphasize brain dysfunction is critical in shifting both

public attitudes and personal beliefs that lead to self-stigma.

Receiving a psychiatric diagnostic label and the pessimistic attitudes of health care

professionals have also been found to contribute to the formation of self-stigma by creating

a sense of “otherness”. What health care providers tell people about their condition has a

major impact of their confidence, belief in recovery and future aspirations. Addressing the

social, and vocational impact early on in treatment is critical to pre-empting self-stigma.

Waiting to get well or be symptom free before embarking on the journey of recovery is not

helpful. This includes efforts to return to work. Those people with a high level of illness

awareness and who identify strongly with their psychiatric diagnosis are found to have better

functional outcomes but also experience more self-stigma, lessened hope, pessimism

regarding recovery, and diminished self-esteem. 91 A high level of self-stigma is positively

associated with an increased risk of psychiatric hospitalization92 and self-stigma is found to

be higher amongst people who believed medications and therapy were not helpful. . Some

researchers have found that those who disagree with discriminatory social attitudes may be

more likely to participate in counseling. 93 This apparent paradox requires a careful dance

between promoting the efficacy of treatment without placing an over emphasis on diagnostic

labeling. Participating in cognitive behavioural therapy may be helpful on an individual level

to challenge stigmatizing beliefs that are irrational or harmful. 94

Stigma is powerfully reinforced by culture and is not easily overcome at the individual level.

It is important to acknowledge this as a ‘social problem’ and not a problem of individual poor




adaptation. Many people with mental illness expect to be rejected leading them to become

secretive about their condition, limit, or withdraw entirely from, social interaction. Hiding

ones history of illness, social isolation and efforts to educate significant others about mental

illness are the most common coping strategies people employ, consume a lot of energy,

have not been found to reduce self-stigma and may do more harm than good. 95

What protects people from self-stigma? Not everyone responds negatively to social stereotypes. Some people react with a sense of

righteous anger at the discrimination they face. This often leads to taking on roles of

advocate in pursing social and systemic system change. Others feel indifferent to the

negative stereotypes, which they reject as illegitimate. Those who reject the legitimacy of

common stereotypes have often experienced positive personal contact with others who

have mental health problems. 96, 97 The New Zealand ‘Fighting Shadows’ research report on

self-stigma identified important ‘circuit-breakers’ to counter discrimination and negative

thought patterns which include: increasing visibility of people with mental illness, building

peer support networks, affirming human rights, challenging negative attitudes, and

encouraging mental health services to focus on recovery. 98

Additional protective factors identified in the research include:

• Having a high degree of peer group identification and sense of belonging.

Participation in peer support and self-help groups, which facilitate empowerment

and build self-esteem and self-efficacy. Peer leaders who act as role models. 99

• De-emphasizing the psychiatric diagnostic label.

• Access to rehabilitative and recovery focused supports and services.

• Disclosure has positive health and social benefits helping people to reframe the

negative experience of illness more positively. Peer support groups are felt to

provide a supportive environment where people can practice self-disclosure. 100, 101

• Holding an insiders perspective provides people with a “buffering life space” where

they can begin to make sense of their social world and reject the role of ‘victim’. 102

• Participation in anti-stigma campaigns, speaking out against discrimination,

becoming involved in reform and advocacy efforts helps people feel empowered and

cope with discrimination. 103

• Opportunities for choice within treatment planning, housing, and program

involvement and access to recovery oriented supports and services. A collaborative,




respectful, and inclusive relationship with professionals built on trust and mutual

respect. 104

• Strong sense of self-esteem and self-efficacy. Participation in the work-force and

support in returning to employment of school. Active engagement in the community

including volunteering, participation in arts and leisure, sports and recreation as well

as inclusion in mental health program design and service delivery. 105

• Empowerment and opportunities for choice and self-determination are critical.

Opportunities for defining self and their experience of illness. Understanding the

importance of interdependence.

THE IMPORTANCE OF PEER SUPPORT & EMPOWERMENT

Peer support and self help have deep roots within the consumer movement. For decades,

consumers have felt excluded from decision-making within treatment planning and program

development and the low expectation for recovery. Viewed through a less optimistic lens,

professional treatment centered on diagnosis, symptom management, disease containment,

and the treatment of psychopathology to prevent relapse and stave off deterioration in

function. In response, consumers they found ways to support each other building peer-

driven, self-help supports and services including economic development initiates. 106 Within

peer support groups people saw that the success was indeed possible and the concept of

‘recovery’ emerged creating a new sense of empowerment, optimism and hope.107

Consumer-focused recovery was/is seen as a challenge to treatment strategies, which are

too narrowly focused on symptom alleviation instead of addressing people's multiple

residential, social, vocational, and educational needs. 108, 109, 110

Research, although limited, confirms the importance of peer support and it now identified as

a ‘best practice’ in mental health service provision. 111 , 112, 113 The WHO acknowledges that

informal self supports play a foundational role in mental health care in both prevention and

recovery. 114 In Canada peer support takes multiple forms including: running alternative

businesses, patient counsels, self-help supports, participation in education, advocacy and

research efforts, peer counselors and support workers, and delivering recreational, cultural

and artistic enterprises. Consumer-directed initiatives differ from mainstream services in

significant ways including: a changed power relationship with consumers providing

egalitarian control over decision-making; a spirit of advocacy; group identification through

reciprocal helping roles; a different understanding of mental health issues focused more on

holistic care, hope, recovery; moving away from the role of ‘patient’ towards greater self-

efficacy and control; and adoption of the advocates role in influencing systems. Research




reveals that peer support is highly valued by consumers. 115 Participation significantly

reduces hospitalizations (number & duration), decrease symptom distress, and the use of

emergency rooms, and other expensive medical services. It helps to ease the transition from

psychiatric hospitalization to community living. Peer support increases social contacts,

builds group identification, supportive networks, and enhances quality of life. It helps people

to re-frame distressing life experiences positively and to normalize the experience of mental

ill-health so that people feel less broken and different from fellow citizens. Programs also

help people learn self-management strategies, awareness of resources, how to navigate

professionally run services and in this way promotes recovery and increase self-esteem.116

Consumer-led economic development initiatives helps to affirm a persons capacity to work,

and reduces pessimism regarding recovery. Consumer employment (peer support workers

and counselors) working within mental health services is also found to reduce stigma and

discrimination amongst health care providers. 117, 118, 119, 120 A sense of group identification

and membership has also been found to improve the well-being of marginalized groups

including people living with mental health issues. 121 However, people who have suffered a

loss of self-esteem, because of stigma, may not experience a beneficial effect from peer

support. 122

Funding of Peer Support

Consumer Survivor Initiatives 2 and peer support programs remain poorly understood by

policy planners and mental health service providers. Despite their recognition as ‘best

practice’, demonstrated efficacy, and effectiveness, they are inadequately funded - if at all.

In Ontario, the province which provides the greatest financial support, consumer-led

services receive only 0.2% of mental health service budgets and less than 3% of the total

community mental health budget. 123 In an economic analysis of the cost savings associated

with utilizing peer support by patients transitioning from hospital to community living,

researchers calculated that peer support saved over $12 million dollars in shorter hospital

stays and emergency room usage - an average savings of $4,400 per person studied.

Additional benefits included: reduced loneliness, improved social skills, enhanced quality of

life, and feelings of well-being which contributed to better recovery outcomes. 124 This

funding neglect extends beyond peer support and is endemic across all mental health

treatment and support services. According to the Institute of Psychiatry, Kings College and

London School of Economics stigma plays a contributing role in the low funding priority

affording by governments to mental health problems relative to other health issues such as

2 CSI is the terms used to describe government funded consumer-directed services in Ontario




cancer or heart disease. This funding neglect is despite higher levels of morbidity and

mortality, which are worsened as a consequence of services not being available in a timely

or at an adequate level. 125 The failure of governments to fund this effective best practice

element of care is considered by many consumers as an expression of the systemic

discrimination.

Empowerment

SAMHSA’s National Consensus Statement of Recovery defines empowerment as:

“consumers have the authority to choose from a range of options and to participate in all

decisions—including the allocation of resources—that will affect their lives, and to be

educated and supported in so doing. Consumers have the ability to join with other

consumers to collectively and effectively speak for themselves about their needs, wants,

desires, and aspirations. Through empowerment, an individual gains control of his or her

own destiny and influences the organizational and societal structures in his or her life.” 126

Empowerment comes with taking responsibility for ones life and choices and through

restoring a sense of free will. 127 It is a positive mediator between self-stigma and personal

goal attainment. The empowerment journey includes having ones experience validated,

consciousness-raising, feeling a sense of righteous anger, defiance, and constructive

participation in advocating for personal and systemic changes. Participating in peer support

nurtures empowerment and empowerment is critical to leadership development, promotes

self-disclosure, which are powerful inoculants against self-stigma. Consumers feel

empowered when they are able to hold stakeholders accountable and participation in

systemic advocacy helps to identify solutions and supports systemic change. 128, 129, 130

INCLUSION IN RESEARCH

Research helps us understand the world we live in and shapes how we act within it. Power

comes from defining the research questions asked, participating in the asking and shaping

the research design. Consumers have not always faired well in the research enterprise and

throughout history, unwitting participants have experienced significant harm. 131 Consumers

are increasingly aware of their unique expertise and “owned knowledge” gained through the

production of personal narratives and collective wisdom. Although this experiential

knowledge is often devalued by professionals as anecdotal, lacking professional integrity

and authority, it is increasingly recognized as a valuable resource and is helping to shape

public policies and treatment practices. 132 Ministries of Health are increasingly requiring

that consumers be involved in planning, implementing, and evaluating services at every level.




Evidence is slowly emerging to support the importance of peer support and empowerment in

reducing self-stigma and discrimination. However people living with mental health issues

have not yet played a direct or prominent role in defining research priorities or participating

beyond being the objects of study.. 133, 134 Internationally, the expertise of consumers is being

recognized and incorporated into research design and program development. 135, 136 Like

many other marginalized groups consumers have also questioned the benefits of existing

methodologies used in research and fear that their concerns will be subsumed by the

researcher’s voice. 137 According to Glen White, the “golden rule” for ethical consumer

participation is that it must both benefit and empower participant.138

There are significant barriers to building consumer participation in research including funding

criteria and epistemological biases against qualitative, participatory action and emancipatory

research, and institutionally-based biases in the ethics review process, that create powerful

disincentives for consumer involvement. Some researchers feel that consumer involvement

can produce better and more ethical research and recommendations to policymakers to

build this approach into research practices is emerging. 139 Consumers in Canada have been

asking for more out-comes focused, action-oriented research on reducing stigma and

discrimination. 140 In 2008, the Mood Disorders Society of Canada held a research plenary

session including consumers, family members, researchers, policy planners and funders to

identify the critical research questions consumers and families want addressed. 141 It was

clear they felt the ‘right’ questions are not being asked, they want to play a more active role

in research design and want to see more action-oriented outcomes-driven research on

stigma and discrimination. There was a sense that traditional research methodology was

failing to get at the nub of consumer concerns, that publicly funded research findings are not

widely shared, or in a format from which people can derive meaning. Most importantly that

the outcomes of research was having little significant impact on reducing discrimination,

changing behaviour or improving quality of life. A subsequent review by the MDSC in 2009

revealed little has changed.142 The Mental Health Commission of Canada’s Scientific

Advisory Committee is in the early stages of supporting the development of a Canada-wide

consumer-led research group. While a promising start It is too early to determine if this will

help play a meaningful role in building the capacity of consumer researchers. 143

Summary of findings:

Stigma and discrimination is identified as a critical issue with far-reaching health, economic

and social consequences for people living with mental health issues. Engagement of

consumers as leaders is a critical ‘best practice’ in designing, delivering, and evaluation anti-




stigma and discrimination strategies. Research reveals that the most effective means of

combating public stigma and discrimination is through the use of education - to build a

shared understanding; positive contact - with people who have experienced mental health

issues; and protesting inequities and misrepresentations - particularly in the media.

Confronting myths of personal responsibility, incompetence, incapacity, and dangerousness

is critical. A robust anti stigma/discrimination reduction strategy includes adopting a human

rights approach to address systemic barriers and inequalities at a policy, practice, and legal

level. Framing mental health issues as genetic, biologically based illness, and chemically

mediated brain disorder increases stigma, the desire for social distance and tolerance for

coercive treatment. Stigma is diminished when illness is framed as part of our shared

humanity and by emphasizing equality goals and recovery. Self-stigma is a critical factor in

limiting people’s pursuit of life’s goals and needs to be includes as part of an anti-stigma

strategy. Group identification, empowerment, and peer support plays a critical healing and

protective role in preventing self-stigma. Participating in education, protest and system

advocacy reduces self-stigma and supports recovery. Peer support programs are a highly

valued, under funded and an effective means of support. Consumers and professionals

experience this funding neglect as discriminatory. Research is limited in large part because

consumers are not included as partners in research and their issues are unique supports are

under-evaluated creating further barriers to being funded as a ‘best practice’.

KEY MESSAGES FOR NNMH

‘Best practices’ in anti-stigma/discrimination programming must include:

Robust involvement of consumers in stigma and discrimination programming.

Mental ill-health framed as part of our shared humanity - not as a disease of the brain.

The use of an “Illness like any other” approach to education does not reduce but

increases stigma.

Increasing the visibility of people living with mental health issues as competent, capable

‘citizens’ and not ‘problems’ to be solved.

Conveying messages of hope, optimism, and recovery. Emphasizing disability,

morbidity and mortality increase stigma and discrimination.

Addressing human rights through supporting policies, practices, and laws.

Include all stakeholders to work in collaborative partnerships to remove systemic

barriers. This must be seen as a share responsibility.

Improving quality of life, social inclusion, and full citizenship must be the outcomes of

programming. This includes improvements in:




• Housing, employment, education and training, income security, safety, improved health

& mental health, recovery-focused care, stop discrimination, supportive communities,

access to mainstream services…

Funding of empowerment / peer support programs is critical because:

• Peer-support is recognized in Canada and worldwide as a “best practice” in mental

health service delivery. It delivers results and is cost effectiveness.

• Peer support, group identification, and participation in education and advocacy efforts

is core to overcoming self-stigma and improving quality of life.

• Reducing self-stigma removes a barrier to pursuing treatment, work, and friendships

and supports recovery.

• Consumer leadership drives systemic transformation and peer-support builds

consumer leadership.

• Across Canada, peer-driven services are devalued and under-funded.

Building a research evidence-base is essential but…

• Must include action-oriented, outcomes focused research reflecting consumer

priorities.

• Publicly funded research must include participatory-action, qualitative and

empowerment research design.

• Consumers must be seen as partners NOT subjects in research delivery.

• Research must both benefit and empower consumers.

• Knowledge is shared in accessible and meaningful ways using user-friendly language.




REPORT REFERENCES

1 Capponi, P. 2003. Beyond the crazy house: Changing the future of madness. Toronto: Penguin.

2 Church, K. 1997b. Because of Where We’ve Been: The Business Behind the Business of

Psychiatric Survivor Economic Development. Toronto: Ontario Council of Alternative

Businesses. Available from [email protected] and soon to be posted on the website

for the School of Disability Studies at Ryerson University: www.ryerson.ca/ds

3 Ontario Recovers Campaign. 2005. What recovery means to us. A statement published by the ORC.

4 O’Hagan, M., Mckee, H., & Priest, R. (2009) Consumer Survivor Initiatives In Ontario: Building For An Equitable Future, OFCMHAP

5 Poole, J. 2008. The language of recovery. In Honouring the Past, Shaping the Future: 25 years of progress in mental health advocacy and

rights protection. Toronto: Psychiatric Patient Advocacy Office.

6 Martin, N., Johnston, V. (2007) A Time for Action: Tackling Stigma and Discrimination. Prepared for the Mental Health Commission of

Canada. Available at: http://www.mentalhealthcommission.ca/SiteCollectionDocuments/Anti-stigma/TimeforAction_Eng.pdf

7 Keogh, F. (2009) From Vision to Action? An Analysis of the Implementation of A Vision for Change. Mental Health Commission of Ireland

8 World Health Organisation (2003) Mental Health Policy, Plans and Programmes. Mental Health Policy and Service Guidance Package. WHO,

Geneva.

9 Fair Deal For Mental Health: Our manifesto for a 3 year campaign dedicated to tackling inequality in mental healthcare (2008) Produced by

The Royal College of Psychiatrists. Available at: http://www.rcpsych.ac.uk/campaigns/fairdeal.aspx 10 http://www.mentalhealthcommission.ca/english/pages/default.aspx

11 Thornicroft, G. Rose, D. Kassam, A. and Sartorius, N. (2007) Stigma: ignorance, prejudice or discrimination?; BRITISH JOURNAL OF

PSYCHIATRY; 190 192-193

12 Martin, N. (2009) Stigma, Discrimination and Social Inclusion: A review of the literature on best and promising practices. Prepared for the

Queensland Alliance to be released in Feb. 2010.

13 Martin, N. (2009) Quality of Life: As defined by people living with schizophrenia & their families. Prepared for the Schizophrenia Society of

Canada.

14 Read, J. and Baker, S. (1996) Not Just Sticks and Stones: A Survey of the Stigma, Taboos and Discrimination Experienced by People with

Mental Health Problems. London: Mind.

15 Link, B.G., Struening, E.L., Rahav, M., Phelan, J.C. and Nuttbrock, L. (1997) On stigma and its consequences: evidence from a longitudinal

study of men with dual diagnoses of mental illness and substance abuse, Journal of Health and Social Behavior, 38(2):177–90.

16 Marwaha Steven; Johnson Sonia (2004) Schizophrenia and employment - a review. Social psychiatry and psychiatric epidemiology

;39(5):337-49.

17 Stoep AV, Weiss NS, Kuo ES, Cheney D, Cohen P. (2003) What proportion of failure to complete secondary school in the US population is

attributable to adolescent psychiatric disorder? J Behav Health Serv Res. 2003 Jan-Feb;30(1):119-24.

18 Freudenberg N, Ruglis J. Reframing school dropout as a public health issue (2007). Prev Chronic Dis;4:A107.

19 Angermeyer, M.C. and Matschinger, H. (2003). The stigma of mental illness: effects of labelling on public attitudes towards people with

mental disorder. Acta Psychiatrica Scandinavica 108(4), 304-309.

20 SAYCE, L. (2000) From Psychiatric Patient to Citizen: overcoming discrimination and social exclusion (Basingstoke, Macmillan).

21 Thornicroft, G. Actions Speak Louder: Tackling Stigma and discrimination against people with mental illness. (2006) Mental Health

Foundation. Available: http://cep.lse.ac.uk/textonly/research/mentalhealth/GrahamThornicroft_Actions-Speak-Louder.pdf

22 Thornicroft G. Shunned: Discrimination against People with Mental Illness. Oxford: Oxford University Press; 2006.

23 Read, J. (2002) The need for evidence-based destigmatization programmes isps newsletter vol.5 no.2 – January 2002.




24 Olav Nielssen, O., Bourget, D., Laajasalo, T., Liem, M., Labelle, A., Häkkänen-Nyholm, H., Koenraadt, F., and Large, M.M. (2009) Homicide

of Strangers by People with a Psychotic Illness Schizophrenia Bulletin Advance Access published on October 12, 2009, DOI

10.1093/schbul/sbp112

25 Johnstone M-J., Stigma, social justice and the rights of the mentally ill: Challenging the status quo (2001). Australian and New Zealand

Journal of Mental Health Nursing, Volume 10, Number 4, 1 December 2001 , pp. 200-209(10)

26 A. Diaz-Caneja and S. Johnson. (2004) The views and experiences of severely mentally ill mothers - A qualitative study; Soc.Psychiatry

Psychiatr.Epidemiol.; 39 6 ;472-482

27 Handiside, A. (2003). Our Physical Health... Who Cares? Wellington, Mental Commission. Ministry of Health.

28 Osborn, D.P.J. The poor physical health of people with mental illness. West J Med. 2001 November; 175(5): 329–332.

29 Jones D, Macias C, Barreira P, Fisher WH, Hargreaves WA, Harding CM. Prevalence, severity, and co-occurrence of chronic physical health

problems of persons with serious mental illness. Psychiatr Serv 2004; 55(11):1250-1257.

30 Rethink/Institute of Psychiatry, (2003) Reducing Stigma and Discrimination: What works?, Conference Report, Birmingham.

31 O'Hagan, M. (2004). Recovery in New Zealand: Lessons for Australia? Australian e-Journal for the Advancement of Mental Health 3(1)

www.auseinet.com/journal/vol3iss1/ohaganeditorial.pdf

32 Lim, K.-L., Jacobs, P., Ohinmaa, A., Schopflocher, D., & Dewa, C.S. (2008). A new population-based measure of the economic burden of

mental illness in Canada. Chronic Diseases in Canada, 28(3), 92-97. Published bythe Public Health Agency of Canada.

33 Freidle, L., Parsonage, M. (2007) Mental Health Promotion: Building an economic case. Northern Ireland Association for Mental Health.

Available: https://mentalhealthcommission.dialoguecircles.com/adx/aspx/adxgetmedia.aspx?MediaID=3065&Filename=MHP_-

_Building_an_Economic_Case.pdf

34 Priebe, S., Badesconyi, A., Fioritti, A., Hansson, L., Kilian, R., Torres-Gonzales, F., Turner, T. and Wiersma, D. (2005) Reinstitutionalization in

mental health care: comparison of data on service provision from six European countries, British Medical Journal, 330(7483): 123–6.

35 Criminalizing Illness? Strategies to Reduce the Over-Representation of People with Mental Illness in the Criminal Justice System,

QUEENSLAND ALLIANCE 2005 Available: http://www.qldalliance.org.au/resources/items/2005/04/06768-upload-00001.pdf

36 Simpson, A.F.I., Brinded, P.M.J., Laidlaw, T.M., Fairley, N., Malcolm, F. (1999). The National Study of Psychiatric Morbidity in New Zealand

Prisons, New Zealand: Department of Corrections.

37 Brinded, P. Stevens, I. Mulder, R.T. The Christchurch prisons psychiatric epidemiology study: methodology and prevalence rates for

psychiatric disorders. Criminal Behaviour and Mental Health 2002;9:131-43

38 Link, B.G., Struening, E.L., Rahav, M., Phelan, J.C. and Nuttbrock, L. (1997) On stigma and its consequences: evidence from a longitudinal

study of men with dual diagnoses of mental illness and substance abuse, Journal of Health and Social Behavior, 38(2):177–90.

39 Department of Health, Safety First: Five year report of the national confidential inquiry into suicide and homicide by people with mental

illness, (London, Department of Health, 2001a).

40 Suicide Risk Factors: Responseability Fact Sheet B6 (2009) Available: http://www.responseability.org/client_images/782125.pdf

41 ARAFMI NSW (2005), Carer Services Mapping Project, Report for NSW Government Department of Health, as cited in Merton and

Bateman, op. cit., p. 14.

42 Hayes, A. Gray, M., Edwards, B.,(2008) Australian Institute of Family Studies: Social inclusion: Origins, concepts and key themes.

43 Corrigan, P. W., Watson, A. C., & Miller, F. E. (2006d). Blame, shame, and contamination: The impact of mental illness and drug

dependence stigma on family members. Journal of Family Psychology, 20(2), 239-246.

44 Gabriel P, Liimatainen MR: Mental health in the workplace. Geneva, International Labour Organisation; 2000.

45 Lim, K.-L., Jacobs, P., Ohinmaa, A., Schopflocher, D., & Dewa, C.S. (2008). A new population-based measure of the economic burden of

mental illness in Canada. Chronic Diseases in Canada, 28(3), 92-97. Published by

the Public Health Agency of Canada

46 Corrigan, P., (2009) A Toolkit of Measures Meant to Evaluate Programs that Erase the Stigma of Mental Illness. Draft – unpublished.




47 Thornicroft, G. (2006) Actions Speak Louder: Tackling Stigma and discrimination against people with mental illness. Mental Health

Foundation. Available: http://cep.lse.ac.uk/textonly/research/mentalhealth/GrahamThornicroft_Actions-Speak-Louder.pdf

48 SANE Research Report 1: Mental illness and social isolation (August 2005) issn 1832-8385

PDF version available at www.sane.org

49 Link BG, Phelan JC. (2001) Conceptualizing stigma. Annual Review of Sociology; 27:363-385.

50 Corrigan PW, River LP, Lundin RK, Penn DL, Uphoff-Wasowski K, Campion J, Mathisen J, Gagnon C, Bergman M, Goldstein H, Kubiak MA.

(2001) Three strategies for changing attributions about severe mental illness. Schizophr Bull. 2001;27(2):187-95.

51 Persaud, R. (2004) Lay public attitudes to psychosis: Are doctors doing all they can?; Epidemiol.Psichiatr.Soc.; 13 4 ;219-221

52 Penn, D.L., Guynan, K., Daily, T., Spaulding, W.D., Garbin, C.P., & Sullivan, M. (1994). Dispelling the stigma of schizophrenia: What sort of

information is best? Schizophrenia Bulletin, 20, 567-578.

53 Corrigan, P.W. & Penn, D.L. (1999). Lessons from social psychology on discrediting psychiatric stigma. American Psychologist, 54, 765-

776.

54 Mental Health policy and practice across Europe. The future direction of mental health care. (2007) Edited by Martin Knapp, David McDaid,

Elias Mossialos and Graham Thornicroft.

55 Spagnolo, A. B. Murphy A. A. and Librera L. A.. (2008) Reducing stigma by meeting and learning from people with mental illness;

Psychiatr.Rehabil.J.; 31 3 ;186-193

56 Angermeyer, M. C., & Schulze, B. (2001). Reducing the stigma of schizophrenia: Understanding the process and options for interventions.

Epidemiologia e Psichiatria Sociale, 10(1), 1-7.

57 T. M. Lincoln, E. Arens, C. Berger and W. Rief. (2008) Can anti-stigma campaigns be improved? A test of the impact of biogenetic vs

psychosocial causal explanations on implicit and explicit attitudes to schizophrenia; Schizophr.Bull.; 34 5 ;984-994

58 Nagel, T, Thompson, C, (2007) AIMHI NT ‘Mental Health Story Teller Mob’: Developing stories in mental health, Australian e-Journal for the

Advancement of Mental Health, vol 6, issue 2

59 Chang, C, Increasing Mental Health Literacy via Narrative Advertising, (2008) Journal of Health Communication, 13:37-55

60 Pinfold, V., Huxley, P., Thornicroft, G., Farmer, P., Toulmin, H., & Graham, T. (2003). Reducing psychiatric stigma and discrimination -

evaluating an educational intervention with the police force in England. Social Psychiatry and Psychiatric Epidemiology, 38(6), 337-344.

61 Gordon, S. (2005). The Power of Contact. Wellington, Case Consulting.

62 Corrigan, P. (2003). Beat the stigma: Come out of the closet. Psychiatric Services, 54(10), 1313.

63 Corrigan, P. (2003). Beat the stigma: Come out of the closet. Psychiatric Services, 54(10), 1313.

64 Protest and Rewards Strategies, ADS Centre Presentation, Sept. 2006. Available at:

http://promoteacceptance.samhsa.gov/teleconferences/archive/training/teleconference091406.aspx

65 Angermeyer M, Matschinger H. Causal beliefs and attitudes to people with schizophrenia: trend analysis based on data from two population

surveys in Germany. Br J Psychiatry 2005;186:331–334.

66 Read J, Haslam N, Sayce L, Davies E. (2006) Prejudice and schizophrenia: a review of the ‘mental illness is an illness like any other’

approach. Acta Psychiatr Scand: 114: 303–318

67 Read, J. Why promoting biological ideology increases prejudice against people labeled “schizophrenic’’ Australian Psychologist, June 2007;

42(2): 118 – 128

68 Read, J. & Harre, N. (2001). The role of biological and genetic causal beliefs in the stigmatization of ‘mental patients’. Journal of Mental

Health, 10, 223-235.

69 Schnittker, J. (2008) An uncertain revolution: Why the rise of a genetic model of mental illness has not increased tolerance. Social Science &

Medicine, 67(9), 1370-1381.




70 Stigma – Related Attitudes and Beliefs in the United States 1950 - 2006" Presented by Bruce G. Link, Stigma in Mental Health and

Addiction, delivered in Calgary, June 3, 2008.

71 Phelan, Jo C., Yang, Lawrence H., Cruz-Rojas, Rosangely. (2006) Effects of Attributing Serious Mental Illnesses to Genetic Causes on

Orientations to Treatment Psychiatr Serv 57:382-387, March 2006

72 Ross, M. Norman, G. Richard, M. Sorrentino, M. Windell, D. and Manchanda, R. (2008) The role of perceived norms in the stigmatization of

mental illness. Social Psychiatry and Psychiatric Epidemiology Online publication date: 23-Jul-2008.

73 Walker I. And Read J. (2002) The differential effectiveness of psychosocial and biogenetic causal explanations in reducing negative

attitudes toward "mental illness"; Psychiatry-Interpersonal And Biological Processes; 65 4 ;313-325

74 Corrigan PW. How clinical diagnosis might exacerbate the stigma of mental illness. Soc Work. 2007 Jan;52(1):31-9.

75 LAM Danny C. K., SALKOVSKIS Paul M.; An experimental investigation of the impact of biological and psychological causal explanations

on anxious and depressed patients’ perception of a person with panic disorder, Behaviour Research and Therapy Volume 45, Issue 2,

February 2007, Pages 405-411

76 Angermeyer M, and H Matschinger. 2005. Labelling – stereotype – discrimination: An investigation of the stigma process. Social Psychiatry

and Psychiatric Epidemiology 40(5): 391–395.

77 www.stopstigma.samhsa.gov

78 Sayce L, Curran C. , Tackling social exclusion across Europe. In: Knapp M, McDaid D, Mossialos E, Thornicroft G, editors. Mental Health

Policy and Practice Across Europe. The Future Direction of Mental Health Care. Milton Keynes.: Open University Press; 2006.

79 SAYCE, L. (2000) From Psychiatric Patient to Citizen: overcoming discrimination and social exclusion (Basingstoke, Macmillan).

80 Thornicroft, G. (2006) Shunned: Discrimination against People with Mental Illness. Oxford University Press.

81 Sayce L. 2003. Beyond Good Intentions: Making Anti-discrimination Strategies Work. Disability and Society Journal, September.

82 Personal correspondence Oct. 2009.

83 Reducing Discrimination Against People with Mental Illness: Te Kekenga: Whakamana i te Tangata Whaiora Multi-Agency Plan 2005−2007

(Mental Health Commission 2005). Available at: http://www.qldalliance.org.au/resources/items/2009/09/294528-upload-00001.pdf

84 Corrigan PW. How clinical diagnosis might exacerbate the stigma of mental illness. Soc Work. 2007 Jan;52(1):31-9.

85 Quinn, Diane M. & Chaudoir, Stephenie R. (2009, October). Journal of Personality and Social Psychology. 97(4),634-651.

86 Corrigan PW, Watson AC: Paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice 9:35–53,2002

87 Corrigan, P.W., Larson, J.E., Nicolas Rusch, N. (2009) Self-stigma and the “why try” effect: impact on life goals and evidence-based

practices. (World Psychiatry 2009;8:75-81)

88 Caltraux, D. 2003. Internalized stigma: A barrier to employment for people

with mental illness. International Journal of Therapy and Rehabilitation

10(12): 539–543.

89 Kleim, Birgit ... [et al] - Perceived stigma predicts low self-efficacy and poor coping in schizophrenia Journal of Mental Health October 2008,

17(5), 482-491

90 Angermeyer, Matthias C.; Matschinger, Herbert.The Stereotype of Schizophrenia and Its Impact on Discrimination Against People With

Schizophrenia: Results From a Representative Survey in Germany. Schizophrenia Bulletin. Vol 30(4),2004, 1049-1061.

91 Lysaker P.H, Roe D, and Yanos P.T. (2007) Toward Understanding the Insight Paradox: Internalized Stigma Moderates the Association

Between Insight and Social Functioning, Hope, and Self-esteem Among People with Schizophrenia Spectrum Disorder. Schizophr Bull 33:

192-199.

92 Rüsch N, Corrigan PW, Wassel A, Michaels P, Larson JE, Olschewski M, Wilkniss S, Batia K. Self-stigma, group identification, perceived

legitimacy of discrimination and mental health service use. Br J Psychiatry. 2009 Dec;195(6):551-2.




93 Golberstein, Ezra, Eisenberg, Daniel and Gollust, Sarah E. - Perceived stigma and mental health care seeking Psychiatric Services April

2008, 59(4), 392-399

94 Corrigan Patrick W" Empowerment and serious mental illness: treatment partnerships and community opportunities."The Psychiatric

quarterly 2002;73(3):217-28.

95 Link, B. Mirotznik, J & Cullen, F. (1991). The effectiveness of stigma coping orientations: Can negative consequences of mental illness

labelling be avoided. Journal of Health and Social Behavior. 32(3), p. 302 – 320. Abstract available at:

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&list_uids=1940212&dopt=Abstract

96 Corrigan, P. and Watson, A. (2002) Understanding the impact of stigma on people with mental illness. World Psychiatry. Feb; 1(1): 16–20.

97 Corrigan P.W. Watson, A. C., The Paradox of Self-Stigma and Mental Illness. Clinical Psychology: Science and Practice, VoL: 9, NO: 1 PG:

35-53. YR: 2002

98 Fighting Shadows: Self-Stigma And Mental Illness: Whawhai Atu te Whakamâ Hihira. 2008

http://www.likeminds.org.nz/assets/docs/FS%20Brochure_FINAL_SCREEN.pdf

99 Kleim, Birgit ... [et al] - Perceived stigma predicts low self-efficacy and poor coping in schizophrenia Journal of Mental Health October 2008,

17(5), 482-491

100 Hyman, I. (2008) Self-Disclosure and Its Impact on Individuals Who Receive Mental Health Services. Substance Abuse and Mental Health

Services Administration.

101 Otto F. Wahl, Ph.D. Mental Health Consumers' Experience of Stigma Schizophrenia Bulletin 1999 25(3):467-478;

102 Oyserman D, and J Swim. 2001. Stigma: An insider’s view. Journal of Social Issues 57(1): 1–14.

103 Wahl, O. (1999) Mental Health Consumers' Experience of Stigma Schizophrenia Bulletin 25(3):467-478


Canada.

105 http://www.socialinclusion.org.uk/publications/Action_on_Mental_Health%20Fact_Sheets.pdf

106 Chamberlin, J. (2005) User/consumer involvement in mental health service delivery. Epidemiologia Psichiatria Sociale, 14,10-14.

107 Degan, P. (1996) Recovery and the Conspiracy of Hope. Presented at the Sixth Annual Mental Health Services Conference of Australia

http://www.bu.edu/resilience/examples/recovery-conspiracyofhope.txt

108 Anthony WA. Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosoc Rehabil J.

1993;16:11–23.

109 Chamberlin, J. (1990). The ex-patients’ movement: Where we’ve been and where we’re going. Journal of Mind and Behavior, 11, 323-336.

Avialable at: http://www.power2u.org/articles/history-project/ex-patients.html

110 Martin, N. (2008) Consumer-Focused Recovery: A discussion paper on recovery. Commissioned by the Mental Health Commission of

Canada. Available at: http://www.qldalliance.org.au/resources/recovery.chtml

111 Promotion of peer support as a best practice and a core service (Health Systems Research Unit, Clarke Institute of Psychiatry, 1997,

Mental Health Advocacy Coalition, 2008).

112 Eiken, S., & Campbell, J. (2008) Medicaid coverage of peer support for people with mental illness: Available research and state examples.

Thomson Reuters. Retrieved February 23, 2009 from

http://www.hcbs.org/files/150/7485/PeerSupport11‐6.pdf

113 Clarke Institute of Psychiatry Health Systems Research Unit. Review of best practices in mental health reform. Ottawa: Health

Canada; 1997.

114 The Optimal mix of services. (2007) Geneva, World Health Organization. Mental Health Policy, Planning and Service Development

Information Sheet 2. Available at: www.who.int/.../mental_health/policy/services/2_Optimal%20Mix%20of%20Services_Infosheet.pdf

115 http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/SOCI-E/rep-e/rep02may06part3-e.htm#_Toc133223182




116 Kleim, Birgit ... [et al] - Perceived stigma predicts low self-efficacy and poor coping in schizophrenia Journal of Mental Health October

2008, 17(5), 482-491

117 Canadian Mental Health Association, Ontario, Centre for Addiction and Mental Health, Ontario Federation of Community Mental Health

and Addiction Programs, & Ontario Peer Development Initiative. (2005). Consumer/Survivor Initiatives: Impact, outcome, and effectiveness.

Toronto, ON: Ontario Federation of Community Mental Health and Addiction Programs. Available:

http://info.wlu.ca/~wwwpsych/gnelson/csi%20advocacy%20paper%20july%202005.pdf

118 A Longitudinal Study of Consumer/Survivor Initiatives (CSIs) in Community Mental Health in Ontario: Individual-level and System level

Activities and Impacts – Summary Bulletin. (2004). http://www.crehs.on.ca/downloads/csi%20summary%

20bulletin%202004.pdf

119 Mead, Sherry. 2005. Intentional Peer Support: An Alternative Approach. Plainfield, NH: Author.MacNeil, C., & Mead, S. (2005). A narrative

approach to developing standards for trauma‐informed peer support. American Journal of Evaluation, 26 (2), 231‐244.

120 Brown LD, Shepherd MD, Wituk SA, Meissen G. (2008) Introduction to the special issue on mental health self-help. Am J Community

Psychol. 2008 Sep;42(1-2):105-9. Available: http://www.ccsr.wichita.edu/assets/library/508_specialissueintromentalhe.pdf

121 Jetten J, Branscombe NR, Schmitt MT, et al: (2001) Rebels with a cause: group identification as a response to perceived discrimination

from the mainstream. Personality and Social Psychology Bulletin 27:1204–1213

122 Verhaeghe, Mieke, Bracke, Piet and Bruynooghe, Kevin - Stigmatization and self-esteem of persons in recovery from mental illness: the

role of peer support International Journal of Social Psychiatry 2008, 54(3), 206-218

123 O’Hagan, M., Mckee, H., & Priest, R. (2009) Consumer Survivor Initiaive in Ontario: Building an Equitable Future. OFCMHAP.

124 Forchuk, Cheryl. (June 2002). Therapeutic Relations: From Hospital to Community, Final Research Reports. Canadian Health Services

Research Foundation. http://www.chsrf.ca/final_research/ogc/forchuk_e.php

125 Knapp M, Funk M, Curran C, Prince M, Grigg M, McDaid D. (2006) Economic barriers to better mental health practice and policy. Health

Policy Plan. May;21(3):157-70. Epub 2006 Mar 7.

126 National Consensus Statement on Mental Health Recovery U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES" Substance Abuse

and Mental Health Services Administration" Center for Mental Health Services. Available at

http://mentalhealth.samhsa.gov/publications/allpubs/sma05-4129/

127 Onken, S. J., Dumont, J. M., Ridgway, P., Dornan, D. H., & Ralph, R. O. (2002). Mental health recovery: What helps and what hinders? A

national research project for the development of recovery facilitating system performance indicators. Alexandria: National Technical Assistance

Center for State Mental Health Planning and National Association of State Mental Health Program Directors. Available from

www.nasmhpd.org/general_files/publications/ntac_pubs/reports/MHSIPReport.pdf

128 Corrigan, P. (2001). Don’t call me nuts: Coping with stigma and mental illness. Tinley Park, Ill: Recovery Press.

129 Corrigan, P.W., Larson, J.E., Nicolas Rusch, N. (2009) Self-stigma and the “why try” effect: impact on life goals and evidence-based

practices. (World Psychiatry 2009;8:75-81)


Canada.

131 Frese, F.J. (2002) “Ethics in neurobiological research: One consumer/provider’s perspective” in P. Backlar and D. Cutler (eds.) Ethics in

Community Mental Health Care, Kluwar Academic, New York.

132 Beresford, P. (2000) “Service users’ knowledges and social work theory: Conflict or collaboration?” British Journal of Social Work, 30:489–

503.

133 Trivedi P, Wykes T. From passive subjects to equal partners: qualitative review of user involvement in research. British Journal of

Psychiatry 2002; 181:468-472.

134 Thornicroft G, Rose D, Huxley P, Dale G, Wykes T. (2002) What are the research priorities of mental health service users? Journal of

Mental Health 11:1-5.

135 Service Users in Research. http://www.mhrn.info/index/ppi/SUR.html




136 National Institutes of Health RO1 (call for proposals) (Jan 5th 2008). Reducing mental illness and discrimination. Available at:

http://researchfunding.duke.edu/detail.asp?OppID=1919

137 Champ, S. (2002) “Questionnaires from the heart: National agendas and private hopes” Nursing Researcher, 9(4):20–29.

138 White, G. (2002) “Consumer participation in disability research: The Golden Rule as a guide for ethical practice” Rehabilitation Psychology,

47(4):438–446. Available at: www.ohsu.edu/oidd/PAR2/documents/golden_rule.pdf

139 Phillips, R. (2006). Consumer participation in mental health research. Social Policy Journal of New Zealand. 27, pp. 171-182. Available at:

http://www.msd.govt.nz/about-msd-and-our-work/publications-resources/journals-and-magazines/social-policy-journal/spj27/consumer-

participation-in-mental-health-27-pages171-182.html

140 Anthony W.A. Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosoc Rehabil J.

1993;16:11–23.

141 Stanghetta. P. (2006) Stigma and Discrimination Research Workshop Proceedings Report, Prepared by Mood Disorders Society of

Canada. Available at: http://www.mooddisorderscanada.ca/page/research-papers-reports

142 Everett, B. (March 2009): Stigma research and anti-stigma programs: From the point of view of people who live with stigma and

discrimination everyday. Prepared by Mood Disorders Society of Canada.

143 http://www.mentalhealthcommission.ca/English/Pages/Science.aspx

Health & Medicine

Empowerment, Disclosure, Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion