"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
"Empowerment, Disclosure and Group Identification:
Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’
P...
Upcoming SlideShare
Loading in...5
×

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

854

Published on

National Network for Mental Health commissioned review of the literature.

Published in: Health & Medicine
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total Views
854
On Slideshare
0
From Embeds
0
Number of Embeds
3
Actions
Shares
0
Downloads
16
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

Transcript of "Empowerment, Disclosure, Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion. "

  1. 1. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 1/25 3/27/13
  2. 2. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 2/25 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
  3. 3. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 3/25 3/27/13 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.
  4. 4. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 4/25 3/27/13 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
  5. 5. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 5/25 3/27/13 • 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
  6. 6. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 6/25 3/27/13 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
  7. 7. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 7/25 3/27/13 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);
  8. 8. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 8/25 3/27/13 • 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
  9. 9. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 9/25 3/27/13 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
  10. 10. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 10/25 3/27/13 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-
  11. 11. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 11/25 3/27/13 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
  12. 12. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 12/25 3/27/13 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,
  13. 13. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 13/25 3/27/13 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
  14. 14. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 14/25 3/27/13 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
  15. 15. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 15/25 3/27/13 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.
  16. 16. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 16/25 3/27/13 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-
  17. 17. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 17/25 3/27/13 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:
  18. 18. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 18/25 3/27/13 • 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.
  19. 19. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 19/25 3/27/13 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 k3church@ryerson.ca 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.
  20. 20. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 20/25 3/27/13 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.
  21. 21. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 21/25 3/27/13 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.
  22. 22. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 22/25 3/27/13 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.
  23. 23. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 23/25 3/27/13 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):467-478 104 Martin, N. (2009) Quality of Life: As defined by people living with schizophrenia & their families. Prepared for the Schizophrenia Society of 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
  24. 24. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 24/25 3/27/13 116 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) 130 Martin, N. (2009) Quality of Life: As defined by people living with schizophrenia & their families. Prepared for the Schizophrenia Society of 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
  25. 25. "Empowerment, Disclosure and Group Identification: Reducing Self-Stigma, Discrimination and Enhancing Social Inclusion"’ Prepared by Neasa Martin 25/25 3/27/13 136 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

×