impact of stigma on the clients' participation in mental health services
TRANSCRIPT
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 0 8 0 3 6 4 8 6 2 0 3 0 8 1 8 4 4 4 6 4 4 5 [email protected] [email protected]
Daramola Abayomi Sunday Yomiville Company (c/o Loy & Associates) 1 Oyegunwa Street, Shogunle Lagos State [email protected] 0 7 0 3 4 5 1 6 0 6 0 0 8 0 5 1 9 9 6 6 9 5
Saleh Dauda Akwai Substance Abuse Treatment and Rehabilitation Center Vom Christian Hospital (VCH) Vom, Plateau State 0 8 0 3 4 6 7 1 4 8 5
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Impact of Stigma
Impact of Stigma on the Clients’ Participation in Mental Health Services
ABSTRACTMental 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 client’s 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
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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,
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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
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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 person’s 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 individual’s 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 self-
efficacy, anger, learned helplessness and suicide ideation. They think more about what they
will or won’t 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.
Goffman’s 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
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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' Dimensions 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
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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.
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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,
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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
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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 ways—some working through non-labelled individuals,
some working through labelled individuals, and some working through societal institutions,
some direct and obvious and others not—through 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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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
physician’s 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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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.
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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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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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 can’t 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
person’s 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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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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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 ill—such 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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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 person’s concerns, engaging with the client as she or he is, giving
emotional support, aiming to understand the person’s 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).
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