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Impact of Stigma

Impact of Stigma on the Clients Participation in Mental Health Services

Joshua Chiroma Gandi Department of General and Applied Psychology Faculty of Social Sciences University of Jos 08036486203 08184446445 jcgandi2000@yahoo.com gandij@unijos.edu.ng

Daramola Abayomi Sunday Yomiville Company (c/o Loy & Associates) 1 Oyegunwa Street, Shogunle Lagos State updaramola@yahoo.com 07034516060 08051996695

Saleh Dauda Akwai Substance Abuse Treatment and Rehabilitation Center Vom Christian Hospital (VCH) Vom, Plateau State 08034671485

Impact of Stigma

Impact of Stigma on the Clients Participation in Mental Health Services ABSTRACT Mental health field is characterized by multidisciplinary, multidimensional and multifaceted services mostly occasioned by evidence-based practice (EBP). These dynamic services could remedy mental illness and its associated symptoms or disabilities; thereby rehabilitating participants (the persons with mental health challenge) towards recovery. However, most persons could not participate in (or, to say the least, do not adhere to) these recovery and health-promoting services. Research has shown that the services availability, affordability, accessibility, and stigmatization determine the participation of persons with mental health challenge. Hence, this study was designed to explore the impact of stigma on the clients participation in mental health services. Participants were 50 persons with mental health challenge, recruited from three treatment facilities and the community. It was a qualitative research design, using focus group approach. The data were transcribed and analyzed with NVivo 9 (QSR International). The concept of stigma, characterized by misconceptions, prejudices and stereotypes, emerged spontaneously in these focus groups. Respondents endorsed it as hampering the availability, affordability and accessibility of mental health services, thereby negatively affecting their participation in such all-important services. Thus, stigma has negative effect on mental health services and there is need for more enlightenment among the professionals and the general public respectively.

KEY WORDS Mental health services Mental illness Persons with mental health challenge Services access and participation Stigma and discrimination

Impact of Stigma

BACKGROUND Mental health field is characterized by multidisciplinary, multidimensional and multifaceted services encompassing the medical, psychological, social, educational, occupational and vocational being of the individual as well as the community. Finding the nature and rate of mental disorders, the factors that cause or affect mental disorders, and the effective means of treating or preventing mental disorders are some of the most important tasks associated with services in the mental health field. These services, among other things, are occasioned by clinical assessments, diagnostic impressions/formulations, therapeutic interventions,

community integration and positive mental health promotion strategies. Clinical assessment could be described in terms of history taking, interview, mental state examination, psychological testing, and treatment evaluations. The principles and goals of assessment include eliciting the information needed to make a diagnosis that provides the best available framework for making clinical decisions; understanding the causes and context of the disorder; and forming a therapeutic relationship with the patient. The goal of having a classification system for abnormal behaviours is to provide distinct categories, indicators, and nomenclature for different patterns of behaviour, thought processes and emotional disturbances. Both assessment and diagnosis are meant to ensure effective treatments, interventions and management. These efforts have the chief aim of achieving and ensuring a sustained recovery, effective relapse prevention, and a positive mental health promotion that defines overall well being. Research has shown that psychiatric symptoms, psychological distress, and life disabilities caused by mental illnesses are significantly remedied by a variety of evidence-based practice (EBP) treatments. Central to the success of these treatments is the fact that people with psychiatric disorders must participate in the actual treatment so as to enjoy its benefits. Participation in mental health services has been observed to be dependent on availability,

Impact of Stigma

accessibility and affordability of such services. The health belief models are frequently used to explain poor access to and participation in as well as adherence to mental health services (Rosenstock, 1975). These models, originally developed out of public health theories to examine value expectancies related to health, view humans as rational beings that behave in ways that diminish perceived threats (disease symptoms) and enhance perceived benefits. Typical example is health-enhancing behaviours or the behavioural immunogens (Matarazzo & Leckliter, 1988). A key component in the rational equations that make up health beliefs are the deleterious effects of treatment. These might include, of course, certain medication side effects (Aquila et al, 1999) and the over-stimulation that results from some psychosocial treatments (Drake et al, 1986). It is also argued that a third type of unintended effect associated with treatment is stigma.

STATEMENT OF THE PROBLEM Some empirical evidence have shown that many people who meet criteria for treatment, and are likely to improve after participation, either lack access to the services, opt not to access the services, could not afford services or fail to fully adhere to prescribed treatments. Health belief theorists have shown that a rational consideration of the costs and benefits of participating in specific treatments will directly impact whether a certain route of intervention is pursued. A significant cost to engaging in mental health treatment is the stigma associated with it. Many people choose to not pursue mental health services because they do not want to be labelled a mental patient, nor do they wish to suffer the prejudice and discrimination this label entails. PURPOSE OF THE STUDY This study was designed to explore the impact of stigma on mental health services participation by persons with the challenge of mental health concerns. Thus, to determine

Impact of Stigma

how stigmatization affect the participation of persons with mental health challenges in the appropriate treatment services. THEORETICAL FRAMEWORK and CONCEPTUALIZATION OF STIGMA The stigma associated with mental illness is mostly centred on the persons presumed character, a character-derived as applies to alcohol and drug addicts. Negatively ascribed qualities such as a weak will, unnatural passions, or dishonesty are allocated to the character of the person without any interaction with or evidence about the individuals actual personality. In other words, stigmatised people are blamed for their condition, which is intrinsic to their character. Stigmatised individuals are prone to exploitation, victimisation, secondary gain-seeking, and experiences of undue self-presentation concerns. Common reactions to perceived stigma include hurt, disgrace, shame, guilt, secrecy, diminished selfefficacy, anger, learned helplessness and suicide ideation. They think more about what they will or wont say and how they behave socially than those who are not stigmatised. This diagnosis is deemed to be, in part, some sort of character flaw that represents socially undesirable qualities. For example, a person with a mental illness may be believed to be weak (as evidenced by succumbing to the illness), irrational, over-emotional, under-emotional, manipulative, or potentially dangerous to self or others. As with stereotyping, the assumptions emanating from the connotations surrounding mental illness are applied to all persons in that category; one fact about the person taints the whole person. Stigmatising beliefs permeate a given society or culture (Putman, 2008). Though the conceptualizations of stigma should not be viewed as definitive, the following theoretical framework elucidates it in appreciable terms. Goffmans Concept of Stigma Goffman (1963) is widely cited for his insightful exposition of the stigma concept, and any current researcher planning to pose and answer research questions regarding stigma is well

Impact of Stigma

advised to return to it when defining stigma. Although different definitions can be taken from Goffman, a very common one is that of an "attribute that is deeply discrediting" and that reduces the bearer "from a whole and usual person to a tainted, discounted one" (Goffman, 1963, p 3). Viewing stigma as the relationship between an attribute and a stereotype, Goffman's ideas have been carried forward to more recent work on its conceptualization and measurement. His distinctions between the "discredited" and the "discreditable" are evident in subsequent conceptualizations of the "visibility" dimension of stigma (Jones et al. 1984) and in attention paid to "secrecy" as a potential coping mechanism for people whose stigmatizing circumstance is discreditable (Conrad and Schneider 1980; Link et al. 1989). Similarly, Goffman's concepts of the "own" (those similarly stigmatized) and the "wise" (those who know about and accept the stigma) are evident in efforts to measure withdrawal as a stigma coping mechanism (Link etal. 1989). Jones and Colleagues' Di mensions of Stigma A second conceptual framework was developed by Jones et al. (1984), using the term "mark" as a descriptor that encompasses the range of conditions considered deviant by a society that might initiate the stigmatizing process. Stigma takes place when the mark links the identified person via attributional processes to undesirable characteristics that discredit them in the eyes of others. Jones and colleagues proceed to identify six dimensions of stigma: First is concealability which indicates how obvious/detectable the characteristic is to others. It varies depending on the nature of the stigmatizing mark such that those who are able to conceal their condition (e.g., people with mental illness) often do so. Secondly, course which indicates whether the stigmatizing condition is reversible over time, with irreversible conditions tending to elicit more negative attitudes from others. Third is disruptiveness which indicates the extent to which a mark strains or obstructs interpersonal interactions. For example, interaction with people with mental illness is

Impact of Stigma

sometimes experienced as disruptive by others because of a fear of unexpected behaviour by individuals with mental disorders. Fourth, aesthetics, reflecting what is attractive or pleasing to one's perceptions. When related to stigma, this dimension concerns the extent to which a mark elicits an instinctive and affective reaction of disgust. The fifth is origin which refers to how the condition came into being. In particular, perceived responsibility for the condition carries great influence in whether others will respond with unfavourable views and/or punishment toward the identified offender. The sixth (and thus final dimension), peril, refers to feelings of danger or threat that the mark induces in others. Threat in this sense can either refer to a fear of actual physical danger (e.g., from a communicable disease such as leprosy) or exposure to uncomfortable feelings of vulnerability (e.g., uneasiness or guilt resulting from watching a disabled person negotiate a flight of stairs). Link and Phelan's Components of Stigma Link and Phelan (2001) developed a conceptualization in response to criticisms that the stigma concept locates the "problem" in an individual and tends to focus on cognitive processing of information rather than on the discrimination and exclusion that a stigmatized person experiences. Link and Phelan construct a definition that links component concepts under a broad umbrella of the concept they call stigma. In this conceptualization, stigma exists when any of the following interrelated components converge: In the first component, people distinguish and label human differences. In the second, dominant cultural beliefs link labelled persons to undesirable characteristics or negative stereotypes. In the third, the labelled persons are placed in distinct categories so as to accomplish some degree of separation of "us" from "them." In the fourth, the labelled persons experience status loss and discrimination that lead to unequal outcomes.

Impact of Stigma

Stigmatization is entirely contingent on access to social, economic and political power that allows the identification of differentness, the construction of stereotypes, the separation of labelled persons into distinct categories and the full execution of disapproval, rejection, exclusion and discrimination. Thus, we apply the term stigma when elements of labelling, stereotyping, separation, status loss and discrimination co-occur in a power situation that allows them to unfold. Such stigma components are useful in identifying the domain of content that might be part of any stigma measures and the concept might be expanded to include a component for emotional responses. It should be noted that each component is a matter of degree: labels can be more or less socially salient, can be linked relatively strong or relatively weak to stereotypes, people can be more or less set apart, emotional responses can vary from overwhelming to relatively trivial, and the extent of status loss and discrimination can be relatively great or relatively small. Thus, stigma is a "matter of degree" and will vary across stigmatizing circumstances such as schizophrenia, depression, obesity, HIV status, short stature, diabetes, and cancer. Labelling The vast majority of human differences, (e.g., finger length, preferred vegetables) are not considered to be socially relevant. However, some differences, such as skin colour and sexual preference, are currently awarded a high degree of social salience. Both the selection of salient characteristics and the creation of labels for them are social achievements that need to be understood as essential components of stigma. Stereotyping In this component, the labelled difference is linked to undesirable characteristics either in the minds of other persons or the labelled person him- or herself. For example, it may be assumed that a person who has been hospitalized for mental illness represents a violence risk. Separating A third aspect of the stigma process occurs when social labels connote a separation of "us" from "them." For example, members of certain ethnic or national groups,

Impact of Stigma

people with mental illness, or people with a different sexual orientation may be considered fundamentally different kinds of people from "us." When this separation is particularly thorough, members of a stigmatized group may accept stereotypes about themselves and view themselves as fundamentally different from and inferior to other people. Emotional reactions Underrepresented in formulations of stigma are the emotional responses it entails. We believe that this underrepresentation needs to be corrected, because emotional responses are critical to understanding the behaviour of both stigmatizers and people who are recipients of stigmatizing reactions. From the vantage point of a stigmatizer, the identification of human differences, the linking of those differences to undesirable attributes, and the separation of the identified person into a separate "them" group is likely to be associated with emotions of anger, irritation, anxiety, pity, and fear. The emotions engendered are likely to be important for at least two reasons. First, an emotional response is something that can be detected by the person who is stigmatized, thereby providing an important statement about a stigmatizer's response to them as a person. For example, a person who feels some combination of pity and anxiety in the presence of a person with mental illness might modulate his or her voice, speaking softly and in an unnaturally calm tone, signalling to the person with mental illness that he or she is being approached from a standpoint of differentness. Second, emotional responses may shape subsequent behaviour toward the stigmatized person or group through processes identified by attribution theory. In this formulation, attributions about why a negative event occurred, especially the stigmatized person's perceived control over the cause, has great influence over how others will think of and behave toward that person. From the vantage point of the person who is stigmatized, emotions of embarrassment, shame, fear, alienation, or anger are possible. It is observed that the emotion of shame is central to stigma and that shaming processes can have powerful and hurtful consequences for stigmatized persons. For all of

Impact of Stigma

these reasons, we believe that emotional responses and reactions need to be included in the broad conceptualization of stigma. Status loss and discrimination When people are labelled, set apart, and linked to undesirable characteristics, a rationale is constructed for devaluing, rejecting, and excluding them. However, there are also more subtle mechanisms through which labelling and stereotyping lead to negative outcomes. One of these is structural discrimination, in which institutional practices work to the disadvantage of stigmatized groups, even in the absence of purposeful discrimination by individuals. Once cultural stereotypes are in place, they can also have negative consequences that operate through the stigmatized persons themselves via processes specified in modified labelling theory, stereotype threat, and stigma consciousness (Link et al, 1989). Thus, there are a variety of wayssome working through non-labelled individuals, some working through labelled individuals, and some working through societal institutions, some direct and obvious and others notthrough which labelling, stereotyping, and separating result in poor life outcomes for stigmatized persons. Dependence of stigma on power A unique feature of Link's (1989) conceptualization is the idea that stigma is entirely dependent on social, economic, and political power. Groups with less power (e.g., psychiatric patients) may label, stereotype, and cognitively separate themselves from groups with more power (e.g., mental health professionals). But in these cases, stigma as Link and Phelan define it does not exist, because the potentially stigmatizing groups do not have the social, cultural, economic, and political power to imbue their cognitions with serious discriminatory consequences. Without a reference to power differences, stigma becomes a much broader and less useful concept that might be applied to lawyers, politicians, broad street traders, and white people. Structures of Stigma

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Impact of Stigma

Three levels of psychological structures that comprise public and self-stigma include stereotype, prejudice and discrimination. The most common perception of people with a mental illness is that they are dangerous (Corrigan et al., 2002; Emrich et al., 2003). When people hold such belief about the mentally-ill, their responses will be apprehension and will likely result in avoidance and fear. This is technically not a stigma process, but a reaction designed to protect oneself from a perceived threat (Corrigan et al., 2002, 2004). METHOD Research Design It is an exploratory design, using qualitative approach. The variables of interest are stigma (independent variable) and participation in mental health services (dependent variable). Participants A total of 50 persons with mental health challenges, in Nigeria, were recruited by stratified random sampling as study participants. Among them were 36 in-patients diagnosed as Schizophrenia, Manic Episode, Substance-Related Disorders, and Depressive Illness, while 14 not diagnosed but experience symptoms and manifest severe distress in the community. Overall, the participants include 32 male and 18 female. The inclusion criteria has been 18 years of age or older, experiencing and or manifesting mental health challenge, and (per physicians report at time of sampling) possessed the cognitive and physical ability to participate in a focus group. Instruments NVivo 9 (QSR International): The NVivo 9 (QSR International) is a vital resource for planning, team coordination, literature reviews, research design, data analysis and reporting. It provides more time on analysis, discovery, systematic work, and rigorous justification of findings with evidence. Hence, it is use in analyzing the data elicited from participants of this study.

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Impact of Stigma

Data Collection Procedures After institutional approval, followed by individual informed consent, participants were given appropriate orientation on the nitty-gritty of their participation. Four separate focus group meetings, one at each of the four study sites, were conducted between September 2010 and December 2010. During the focus group iterative process, participants were asked not just about stigma specifically but also about salient aspects of health-related quality of life: They were asked open-ended questions about their quality of life and areas most affected by their illnesses or symptoms.
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They were asked about the attitudes of other people towards them and their illnesses. They were asked about their individual attitudes towards the idea of seeking and participating in treatment services.

They were asked about the perception of stigma or the experience of any discrimination in relation to their symptoms or health status.

Following the iterative sessions of focus group meetings, the participants were debriefed and empowered to effectively cope with their illnesses towards recovery and healing. Data/Statistical Analysis Recordings of discussions were transcribed and NVivo 9 (QSR International, 2010) was used to organize the qualitative data. The data were analyzed by coders trained in qualitative data analytic techniques, and coding disagreements were reconciled through discussion. A grounded theory approach guided the identification of themes, and incorporated the techniques of coding, memo writing, and the constant comparative method. RESULTS Results transcribed from the focus groups data has shown perceived stigma as resulting from misconceptions, prejudices and stereotypes. The concept of stigma emerged spontaneously
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Impact of Stigma

among participants in these focus groups, both in treatment facilities and in the community. Those with Substance Related Disorders (group 1) mentioned stigma on (4 occasions, 5.26% of all coded responses), particularly as it related to addiction and intoxication if having difficulty in some public performances (10 instances, 2.48%) and when others questioned their need for assistance (11 instances, 2.73%). The in hospital A (group 2) had participants reported stigma (11 instances, 9.91%) when family and friends avoided them and doubted the legitimacy of their status. They also endorsed their experiences with stigma in relation to being labelled (10 instances, 4.46%) and not being understood (12 instances, 9.94%). Participants in hospital B (group 3) also reported stigma when family and friends avoided them and doubted the legitimacy of their status (10 instances, 9.87%), their experiences of being labelled (11 instances, 6.79%), and not being understood (12 instances, 9.52%). The participants in community setting (group 4), verbalized being discriminated upon due to misconception (4 instances, 5.26), prejudices (10 instances, 2.48%), and stereotypes (6 instances, 3.41). DISCUSSIONS Several studies have demonstrated that depression and anxiety are associated with stigma, and thus, the relationship between stigma and the combined construct referred to as psychological distresses were examined to demonstrate convergent validity. In addition, patient rated performance status has been used extensively in health -related quality of life studies as a measure of general functional status reflecting the course of illness, and thus, set out to examine the relationship between stigma and performance status. Furthermore, pain has not been associated with stigma, and the relationship between pain and stigma was examined to demonstrate divergent validity. Cohen considered 0.40 to be a large effect size and 0.10 to be a small effect size for a one way ANOVA. Likewise, the analysis of stigma and psychological distress in this study produced a large effect size (greater than 0.40) and
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Impact of Stigma

performance status, moderately related to stigma, produced an effect size less than 0.40. Although pain could theoretically be related to stigma, the analysis of pain and stigma in this case produced a small effect size (less than 0.10). From evidences under consideration, stigmatization deprives those with mental health challenges their full measure of human dignity and sense of participating, in wider society, by undermining social support and compromising treatment opportunities. However, researchers distinguished between public stigma (ways in which the general public reacts to a group based on stigma about that group) and self-stigma (the reactions which individuals turn against themselves because they are members of a stigmatized group). In terms of self-stigma, many people with mental illness are aware of the stigma about their group. Like the public, some of these individuals will agree with the stigma and apply it against themselves suffering diminished self-esteem and self-efficacy as a result (Corrigan & Watson, in press a). People with diminished self-efficacy due to self-stigma are less likely to apply for jobs or apartments (Someone who is mentally ill like me cant handle a regular job!). Potential consumers may be labelled mentally ill as the result of several social processes; dominant among these is participating in psychiatric services. Hence, potential consumers may opt to not access care as a way to avoid this label and the resulting discrimination. Our model suggests several targets for diminishing stigma and increasing a persons comfort with participation in treatment.

Discriminations (both individual and institutional) resulting from misconceptions, prejudicial stereotypes and negative public or professional attitudes about mental illness constitute stigma. Widely shared prejudicial attitudes about individuals with schizophrenia and other substance-induced disorders especially continue to stigmatize the victims of those illnesses. Many among the general public assume that persons with psychotic disorders are

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Impact of Stigma

unpredictable and incapable of being managed, even by the best efforts of the health care system, and are therefore considered a threat to the social order and to public safety. Persons suffering from substance-induced disorders suffer the additional widely held presumptions, especially among the rural areas of developing economies like Nigeria. The clients with these diagnoses, whether for lack of character, willpower, or basic social skills to cope with the routine challenges of adult life, have brought affliction upon themselves.

Society encourages and reinforces stigmatization through a host of mechanisms. The movie, print and electronic media, whether unwitting or knowingly feeding and profiting from the societal compulsion to stereotype and ostracize selected groups, encourages stigmatization by dramatizing the psychiatric illness through distorted and exaggerated an outlook thereby presumably more interesting and saleable depictions of mental illness. Print media similarly select as featured coverage psychiatric incidents that reinforce the most egregious, the most titillating, and ultimately, the most marketable product for their business, yet also the most damaging to the image and overall understanding of psychiatric illness.

Public judgment is thereby directed subjectively at the symptoms of mental illness, magnifying and overemphasizing the disparity between normative behaviour and the aberrant actions of the mentally ill, inciting the very fear and prejudice that reinforces stigmatization of persons who have scant opportunity to challenge neither the veracity of the depictions nor the morality of the process. Entertainment television exerts a pernicious influence on children, who develop an understanding of the world unthinkingly from their social context, which increasingly includes passive participation in confabulated realities transmitted through television and computer screens that portray stigmatizing constructs of mental illness. Stigmatization of mental illness may be understood to confound care of the mentally ill by two distinct processes. First and foremost, the stigma of mental illness prevents care

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Impact of Stigma

seeking among the psychiatric population; and secondly, it interferes with the rational treatment of mental illness. Stigma and discrimination occurring in health and social services are particularly harmful for health programmes dealing with stigmatised conditions. They are a major problem for people affected by mental illness, HIV/AIDS and leprosy and need to be addressed as a matter of priority and therefore should be part of stigma assessment. The images portrayed in the media and in educational materials potentially play a powerful role in perpetuating or mitigating stigma. They can serve as an indicator of changing attitudes towards people with stigmatised conditions and are themselves powerful change agents. An audit of such materials therefore would be an important part of stigma assessment. Some commentators consider that the mainstream approach to clinical work, research and teaching should be changed from a focus on clinical symptoms and psychopathology to a person-centred orientation that encourages hope and recovery (Gandi & Wai, 2010). The use of commonplace derogatory terms (or words used in a derogatory manner) about people who are mentally illsuch as crazy, mad, lunatic, mental, psycho, schizo, insane and the likes (Emrich et al., 2003; Pinfold et al., 2003; Putman, 2008)should be clearly deemed unacceptable, unprofessional, and unethical for mental health professionals. Health personnel who refer, triage, or work with people with a mental illness, including those in emergency departments, general practitioners, people answering help lines, or lay persons who run health care information and advice lines also should be involved in anti-stigma programs. Mental health professionals have their own stigmatising language that includes shorthand (chronics), euphemisms (crocks, frequent flyers), and acronyms or negative diagnostic labels (BAD or bipolar affective disorder, schizophrenics) that stand in for the person they are working with.

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Impact of Stigma

Perhaps future models of care should place the client at the centre of their care, rather than being diagnosis, symptom and medication driven. Humanist principles of respect, listening, acknowledging the persons concerns, engaging with the client as she or he is, giving emotional support, aiming to understand the persons situation, working with existing strengths, and conveying hope for the long-term, are all part of an orientation that minimises or prevents stigma (Gandi, 2004; Gandi & Wai, 2010). This person-centred approach supports the person to remain whole and in touch with their sense of internal locus of control. These interactions may take more time in the first instance, but this is better for clinicians and clients in the long-term, as it avoids actively or passively assisting patients to internalise stigma and embark on a cycle of loss, shame, defeat, fear, and treatment aversion. Along with constructive interpersonal approaches congruent with person-centred service models, more specific approaches will be required for patients who have internalised stigma arising from their serious mental illness. It could be challenging for traditional mental health service providers, as this study unfolds, that patients and their relatives are discouraged from talking about their shame in association with mental illness. Perhaps the key factor that differentiates humanist or recovery perspectives from mainstream mental health service provision is working with clients as partners (Gandi & Wai, 2010). REFERENCE Aquila, R., Weiden, P. J., & Emanuel, M. (1999). Compliance and the rehabilitation alliance. Journal of Clinical Psychiatry, 60, Suppl. 19, 23-7. Augoustinos, M. & Ahrens, C. (1994). Stereotypes and prejudice: The Australian experience. British Journal of Social Psychology, 33, 125-141. Brockington, I., Hall, P., Levings, J., & Murphy, C. (1993). The communitys tolerance of the mentally ill. British Journal of Psychiatry, 162, 93-99. Corrigan, P. W., (2004). How stigma interferes with mental healthcare. American Psychol,

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