On Stigma and its Public Health Implications
Bruce G. Link
Columbia University and
New York State Psychiatric Institute
Jo C. Phelan
(1963) book, Stigma: Notes on the Management of Spoiled Identity,
is widely regarded as having inspired a profusion of research focused
on the nature, sources and consequences of stigma. Research since
Goffman’s seminal essay has been incredibly productive, leading to
elaborations, conceptual refinements, and repeated demonstrations of
the impact of stigma on the lives of the stigmatized. The stigma
concept is applied to literally scores of circumstances ranging from
urinary incontinence (Sheldon and Caldwell 1994) to exotic dancing
(Lewis 1998) to being in debt (Davis 1998) and being a mother who is
lesbian (Causey and Duran-Aydintug 1997). Amidst this profusion of
research we return to the stigma concept to reconsider the
conceptualization of stigma, to explore how and why it has pervasive
and persistent effects on people’s lives, how and why it is connected
to the health of the public. After considering these issues we turn
to ideas about what we need to know and what we need to do to address
stigma and its consequences.
One of the curious
features of literature concerning stigma is the variability that
exists in the definition of the concept (Stafford and Scott 1986). In
many circumstances investigators provide no explicit definition and
seem to refer to something like the dictionary definition (“a mark of
disgrace”) or to some related aspect like stereotyping or rejection
(e.g. a social distance scale). When stigma is explicitly defined
many commentators turn to Goffman quoting his definition of stigma as
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).
alternative or elaborated definitions have varied considerably. For
example, Stafford and Scott (Stafford and Scott 1986, p. 80) propose
that stigma “is a characteristic of persons that is contrary to a norm
of a social unit” where a “norm” is defined as a “shared belief that a
person ought to behave in a certain way at a certain time” (p. 81).
Crocker et al. (1998, p. 505) indicate that “stigmatized individuals
possess (or are believed to possess) some attribute, or
characteristic, that conveys a social identity that is devalued in a
particular social context.” An especially influential definition is
that of Jones et al. (1984) who use Goffman’s (1963, p.4) observation
that stigma can be seen as a relationship between an “attribute and a
stereotype” to produce a definition of stigma as a “mark” (attribute)
that links a person to undesirable characteristics (stereotypes).
In addition to
variability in its definition the stigma concept and research based on
it have been criticized for the narrow and biased vision it has
allowed. Two critical challenges can be identified. The first is
that many social scientists who do not belong to stigmatized groups
and who study stigma, do so from the vantage point of theories that
are uninformed by the lived experience of the people they study (Kleinman
et al. 1995; Schneider 1988). For example, in writing about the
experience of disability, Schneider (1988) asserts that “most
able-bodied experts” give priority “to their scientific theories and
research techniques rather than to the words and perceptions of the
people they study.” The result is a misunderstanding of the
experience of the stigmatized and the perpetuation of unsubstantiated
assumptions. Writing about disability, Fine and Asch (1988) identify
five assumptions: 1) that disability is located solely in biology, 2)
that the problems of the disabled are due to disability-produced
impairment, 3) that the disabled person is a “victim,” 4) that
disability is central to the disabled person’s self-concept,
self-definition, social comparisons and reference groups and 5) that
having a disability is synonymous with needing help and social
The second main
element of the critique is that research on stigma has had a decidedly
individualistic focus. For example, according to Oliver (1992), the
central thrust of stigma research has been on the perceptions of
individuals and the consequences of such perceptions for micro-level
interactions. According to Oliver (1992), research examining the
sources and consequences of pervasive, socially-shaped exclusion from
social and economic life are far less common. In another vein, even
though Goffman (1963, p.3) initially advised that we really needed “a
language of relationships, not attributes,” subsequent practice has
often transformed stigmas or marks into attributes of persons (Fine
and Asch 1988). The stigma or mark is something in the person
rather than a designation or tag that others affix to the person. In
this respect the term “stigma” directs our attention differently than
a term like “discrimination.” In contrast to “stigma,”
“discrimination” focuses the attention of research to the producers of
rejection and exclusion — those who do the discriminating rather than
to the people who are the recipients of these behaviors (Sayce 1998).
Thus the terms we use could lead to “different understandings of where
responsibility lies for the ‘problem’ and as a consequence to
“different prescriptions for action” (Sayce 1998).
We use these
critiques to reassess the conceptualization of stigma and related
concepts in a way that is attentive to the challenges they pose for
such a conceptualization. In addition, by proposing that stigma is
best described with reference to the relationships between a set of
interrelated concepts, some of the issues raised by the critiques can
be addressed. An important precedent to locating the meaning of
stigma in the relation between concepts is available in Goffman’s
observation that stigma can be seen as the relationship between an
“attribute and a stereotype.” We expand the nexus of relationships
somewhat with the intent of capturing a fuller set of meanings for the
term by doing so. We state our conceptualization as concisely as we
can and then elaborate the components it contains.
conceptualization, stigma exists when the following interrelated
components converge. In the first component, people distinguish and
label human differences. In the second, dominant cultural beliefs link
labeled persons to undesirable characteristics — to negative
stereotypes. In the third, labeled persons are placed in distinct
categories so as to accomplish some degree of separation of “us” from
“them.” In the fourth, labeled persons experience status loss and
discrimination that lead to unequal outcomes. 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 labeled persons into distinct
categories and the full execution of disapproval, rejection, exclusion
and discrimination. Thus we apply the term stigma when elements of
labeling, stereotyping, separation, status loss and discrimination
co-occur in a power situation that allows them to unfold. With this
brief explication of the stigma concept as background, we turn to a
more detailed examination of each component we identified.
Component #1 – On distinguishing and
The vast majority of
human differences are ignored and are therefore socially irrelevant.
Some of these — such as the color of one’s car, the last three digits of
one’s social security number, or whether one has hairy ears, are
routinely (but not always) overlooked. Many others, such as one’s food
preferences or eye color are relevant in relatively few situations and
are therefore typically inconsequential in the large scheme of things.
But other differences, such as one’s skin color, IQ, sexual preferences
or gender are socially salient in the United States at this time. The
point is that there is a social selection of human differences when it
comes to identifying differences that will matter socially.
The full weight of
this observation is often overlooked because once differences are
identified and labeled, they are typically taken for granted as being
just the way things are — there are black people and white people, blind
people and sighted people, people who are handicapped and people who are
not. There are, however, some observations we can make that bring to
light just how social this social selection of human differences is.
Central in this regard is the observation that substantial
simplification is required to create such groups. One example is the
assignment of individuals to categories of “black” or “white” when there
is enormous variability within the resulting categories and no clear
demarcation between categories on almost any criteria one can think of,
even attributes like skin color, parentage, or facial characteristics
that are believed to be the characteristics that define the categories (Fullilove
1998). The same can be said for other categorizations like gay or
straight, blind or sighted, handicapped or not.
When we turn
attention to medical conditions we note that they vary dramatically in
the extent to which they or their attributes are selected for social
salience. Hypertension, bone fractures, and melanoma are not nearly as
socially relevant as are psoriasis, incontinence and
schizophrenia. Again the distinctions that are drawn are frequently
taken for granted and we may also find it very easy to enumerate the
reasons why people make such distinctions. Still the selection for
social salience is a social accomplishment that must be an important
part of any thorough study of the stigma associated with different
Component #2 – On Associating Human
Differences with Negative Attributes
The second component
of stigma occurs when human differences are linked to undesirable
attributes. This aspect of stigma was highlighted in Goffman’s (1963)
work and has been a central part of the conceptualization of stigma ever
since. In our terms, this aspect of stigma involves a label and a
stereotype with the label linking a person to a set of undesirable
characteristics that form the stereotype. An example of this component
is evident in a vignette experiment conducted by Link et al. (1987).
The study experimentally manipulated labeling, tagging a random half of
the vignettes “former mental patients” and the other half “former
back-pain patients.” It also included a measure of the extent to which
respondents believed that mental patients in general were
“dangerous.” When the vignette described a former back-pain patient,
beliefs about the dangerousness of people with mental illness played no
part in rejecting responses. When the vignette described a former
mental patient, however, these beliefs were potent predictors of
rejecting responses: respondents who believed mental patients were
dangerous reacted negatively to the person described as a former mental
patient in the vignette. Apparently, for many people, the “mental
patient” label linked the described person to stereotyped beliefs about
the dangerousness of people with mental illness, which in turn led them
to indicate a desire for social distance from the person.
Component #3 On Separating “Us from Them”
A third feature of
the stigma process occurs when social labels connote a separation of
“us” from “them”(Morone 1997; Devine, Plant, and Harrison 1999). United
States history and politics offer many examples as established old order
Americans defined African American slaves, American Indians and
successive waves of immigrants as outgroups — the “them” who were very
different from “us.” Few groups were entirely spared. For example,
Morone (1997) provides quotes from Benjamin Franklin’s observations of
the impact of Dutch immigrants (them) on the English colonists (us).
“Already the English begin to quit particular neighborhoods, surrounded
by the Dutch, being made uneasy by the disagreeableness of dissonant
manners... Besides, the Dutch under-live, and are thereby enabled to
under-work and under-sell the English who are thereby extremely
incommoded and consequently disgusted” (Franklin 1752). Central to the
separation of “us” and “them” are other components of the stigma
process. For example the linking of labels to undesirable attributes —
become the rationale for believing that negatively labeled persons are
fundamentally different from those who don’t share the label — different
types of people. In the extreme, the stigmatized person is thought to
be so different from “us” as to be not really human. And again, in the
extreme, all manner of horrific treatment of “them” becomes possible.
Evidence of efforts to separate us from them are sometimes directly
available in the very nature of the labels conferred. Incumbents are
thought to “be” the thing they are labeled (Estroff 1989). For example,
some people speak of persons as being epileptics or schizophrenics
rather than describing them as having epilepsy or schizophrenia. This
is revealing regarding this component of stigma because it is different
for other diseases. A person has cancer, heart disease or the
flu — they are one of “us,” a person who just happens to be beset by a
serious illness. But the person is a “schizophrenic.”
Component #4 Status Loss and Discrimination
In this component of
the stigma process, the labeled person experiences status loss and
discrimination. Most definitions of stigma do not include this
component, but as we shall see, the term stigma cannot hold the meaning
we commonly assign to it when this aspect is left out. In our
reasoning, when people are labeled, set apart and linked to undesirable
characteristics, a rationale is constructed for devaluing, rejecting,
and excluding them. Thus people are stigmatized when the fact that they
are labeled, set apart and linked to undesirable characteristics leads
them to experience status loss and discrimination.
The Dependence of Stigma on Power
Stigma is entirely
dependent on social, economic and political power – it takes power to
stigmatize. In some instances the role of power is obvious. However,
the role of power in stigma is frequently overlooked because in many
instances power differences are so taken for granted as to seem
unproblematic. When people think of mental illness, obesity, deafness,
and having one leg instead of two, there is a tendency to focus on the
attributes associated with these conditions rather on power differences
between people who have them and people who do not. But power, even in
these circumstances, is essential to the social production of stigma.
One way to recognize
this is to focus attention on groups who are relatively low in power and
note that although members of such groups can engage in labeling and
stereotyping they are limited by low power from achieving a deeper and
more complete stigmatization of the people they may seek to stigmatize.
Consider for example patients in a treatment program for people with
serious mental illness. Patients in such a setting are likely to
identify and label human differences in staff. For instance, they might
tag some clinicians with the label “pill pusher” and apply stereotypes
connected with the labels they create such as that pill pushers are
“cold,” “paternalistic,” and “arrogant.” Finally they might treat the
people they identify as pill pushers differently in accordance with the
conclusions they have drawn about them by avoiding or minimizing
communication with them, exchanging derogatory comments and jokes about
them, and so on. Thus although the patients might engage in every
component of stigma we identified, the staff would not end up being a
stigmatized group. The patients simply do not possess the social,
cultural, economic and political power to make their cognitions about
staff have serious discriminatory consequences.
that scenarios similar to the one just described exist for all sorts of
other circumstances in which relatively powerless groups create labels
and stereotypes about more powerful groups and treat members of the more
powerful group in accordance with those stereotypes. Such a realization
clarifies why the definition of stigma must involve reference to power
differences. Without such a reference, stigma becomes a very different
and much broader concept that might be applied to lawyers, politicians,
Wall Street investors and white people. Stigma is dependent on power.
Because of the
importance of power in stigmatization, it is critical to ask the
following set of questions: Do the people who might stigmatize have the
power to insure that the human difference they recognize and label is
broadly identified in the culture? Do the people who might confer stigma
have the power to insure that the culture recognizes and deeply accepts
the stereotypes they connect to the labeled differences? Do the people
who might stigmatize have the power to separate “us” from “them” and to
have the designation stick? And do those who might confer stigma control
access to major life-domains like educational institutions, jobs,
housing and health care so as to put really consequential teeth into the
distinctions they draw? To the extent that we can answer yes to these
questions, we can expect stigma to result. To the extent that we answer
no, some of the cognitive components of stigma might be in place, but
what we generally mean by stigma would not exist.
Mechanisms Producing Stigma-related Discrimination
This standard way of
conceptualizing the connection between labeling/stereotyping and
discrimination points to direct discriminatory behavior on the part of
the person who holds the stereotyped beliefs. In this approach, the
importance of attitudes and beliefs are thought to lie in whether person
A’s labeling and stereotyping of person B leads person A to engage in
some obvious forms of overt discrimination directed at person B like
rejecting a job application, refusing to rent an apartment and so on.
There are several studies that when taken together offer compelling
evidence that this form of discrimination occurs with some regularity in
the lives of people who are stigmatized. In an experiment Page (1977)
demonstrated clear-cut discrimination in landlords reports of apartment
availability by varying whether a prospective tenant indicated that
he/she was calling as a patient from a psychiatric hospital or from
another setting. There is also evidence from non-experimental studies
of real world circumstances in which people with mental illnesses
receive less than adequate treatment following a myocardial infarction.
Druss and colleagues (2000) demonstrate that like women and ethnic
minorities people with schizophrenia are less likely to receive
state-of-the-art procedures such as angioplasty or coronary artery
bypass graft following myocardial infarction than are people who do not
have schizophrenia but have similar physical conditions. Finally, Wahl
(1999) asked a large sample of consumers of mental health services about
experiences of rejection and found that sizeable minorities reported
being denied educational opportunities, jobs, apartments and health
insurance. Thus reports from investigator constructed experiments, from
quasi-experiments conducted in real world settings and from surveys of
consumers converge to indicate that direct discrimination occurs with
unacceptable regularity in the lives of people with mental illnesses.
But direct discrimination is not the only way in which discrimination
This form of
discrimination sensitizes us to the fact many disadvantages can result
outside of a model in which one person does something bad to another
(direct discrimination). In the United States structural discrimination
is clearly evident with regard to differences in life chances between
African Americans and Whites (Hamilton and Carmichael 1967). For
example, employers (more often white) rely on the personal
recommendations of colleagues or acquaintances (more often white and
more likely to know and recommend white job candidates) for hiring
decisions. In instances like these there is no direct denial of a job
to an individual African American person and the employer offering a job
in such an instance need not hold racist beliefs. But does structural
discrimination have an impact on, say, people with schizophrenia?
Consider some possible examples.
Suppose that because
it is a stigmatized illness, less funding is dedicated to research on
schizophrenia than for other illnesses and less money is allocated to
adequate care and management. As a consequence people with
schizophrenia are less able to benefit from scientific discoveries than
they would have been if the illness they happened to develop was not
stigmatized. Further, the resources available to deliver state of the
art treatments are not as well developed as they are for illnesses that
are not as stigmatized as schizophrenia. Consider further that because
of historical processes influenced by stigma, treatment facilities tend
to be either isolated in settings away from other people (Rothman 1971)
or confined to some of the most disadvantaged neighborhoods in urban
settings in communities that do not have enough clout to exclude this
stigmatized group from their midst (Dear and Lewis 1986). These
disadvantaged communities tend to have higher rates of crime, more
pollution, higher rates of infectious disease, and inadequate medical
care. To the extent that the stigma of schizophrenia has created such a
situation, a person who develops this disorder will be the recipient of
structural discrimination whether or not anyone happens to treat him or
her in a discriminatory way because of some stereotype about
schizophrenia. He or she will receive less of the good things and more
of the bad things as a simple consequence of having developed a
stigmatized illness —stigma has affected the structure around the
person, leading the person to be exposed to a host of untoward
Social Psychological Processes Operating
through the Stigmatized Person
Once the cultural
stereotype is in place, it can affect labeled persons in important ways
that do not involve obvious forms of discriminatory behavior on the part
of people in the immediate presence of the stigmatized person. For
example, according to a modified labeling theory about the effects of
stigma on people with mental illnesses (Link 1982; Link, Cullen,
Struening, Shrout, and Dohrenwend 1989), people develop conceptions of
mental illness early in life as part of socialization into our culture (Angermeyer
and Matschinger 1996; Scheff 1966; Wahl 1995). Once in place, people’s
conceptions become a “lay theory” about what it means to have a mental
illness (Angermeyer and Matschinger 1994; Furnham and Bower 1992).
People form expectations as to whether most people will reject an
individual with mental illness as a friend, employee, neighbor, or
intimate partner and whether most people will devalue a person with
mental illness as less trustworthy, intelligent, and competent. These
beliefs have an especially poignant relevance for a person who develops
a serious mental illness, because the possibility of devaluation and
discrimination becomes personally relevant. If one believes that others
will devalue and reject people with mental illnesses, one must now fear
that this rejection applies personally. The person may wonder, “Will
others think less of me, reject me, because I have been identified as
having a mental illness?” Then to the extent that it becomes a part of
a person’s worldview, that perception can have serious negative
consequences. Expecting and fearing rejection, people who have been
hospitalized for mental illnesses may act less confidently, more
defensively, or they may simply avoid a threatening contact altogether.
The result may be strained and uncomfortable social interactions with
potential stigmatizers (Farina, Allen, and Saul 1968), more constricted
social networks (Link et al. 1989), a compromised quality of life (Rosenfield
1997), low self-esteem (Wright, Gonfrein, and Owens 2000), depressive
symptoms (Link, Struening, Rahav, Phelan, and Nuttbrock 1997),
unemployment and income loss (Link 1982; Link 1987).
Again note that in
the modified labeling theory no one in the immediate context of the
person needs to have engaged in obvious forms of discrimination. Rather,
the discrimination lies anterior to the immediate situation and rests
instead in the formation and sustenance of stereotypes and “lay
theories.” Still the consequences are sometimes severe and undoubtedly
contribute greatly to differences in the life chances of people with
Stigma as a persistent predicament
conceptualization draws attention to one way in which stigma is a
persistent predicament — why the negative consequences of stigma are so
difficult to eradicate. When powerful groups forcefully label and
extensively stereotype a less powerful group, the range of mechanisms
for achieving discriminatory outcomes is both flexible and extensive.
We mentioned three generic types of mechanisms — direct discrimination,
structural discrimination and discrimination that operates through the
stigmatized person’s beliefs and behaviors. But lying below these
broad-band designations are a whole multitude of specific mechanisms —
there are many ways to achieve structural discrimination, many ways to
directly discriminate and many ways in which stigmatized persons can be
encouraged to believe that they should not enjoy full and equal
participation in social and economic life. Moreover, if the mechanisms
that are currently in place are blocked or become embarrassing to use,
new ones can always be created. If stigmatized persons cannot be
convinced to voluntarily accept their lower status and inferior rewards,
direct discrimination can be used to accomplish the same outcome. If
direct discrimination becomes ideologically difficult forms of
structural discrimination — like locating people with schizophrenia in
disadvantaged areas of the city — can achieve some of the same ends.
becomes a persistent predicament in the following sense — as long as
stigmatizers sustain their view of the people they would stigmatize,
decreasing the use of one mechanism through which disadvantage can be
accomplished simultaneously creates the impetus to increase the use of
The Importance of
Stigma Processes in Understanding the Distribution of Life Chances
have a dramatic and probably under-recognized influence on the
distribution of life chances, whether those life chances refer to
careers, earnings, social ties, housing, criminal involvement, health or
life itself. Most of the research on stigma proceeds by examining the
stigma associated with one circumstance at a time (e.g. AIDS, obesity,
mental illness, race, gender, homosexuality, etc.) and most also
assesses only one outcome at a time (e.g. earnings, self esteem,
housing, social interactions etc.). When this occurs, researchers often
find some level of effect for a particular stigmatized group on a
particular outcome. However, it is also usually true that many factors
other than the stigma processes in question also influence the outcome,
leaving stigma as just one factor among many. This can lead to the
conclusion that stigma matters but that its effect is relatively modest
compared to other factors. This accounting is misguided for two
reasons. First, in seeking to understand the impact of stigma for a
particular circumstance, one must keep in mind that it can affect many
life chances, not just one. Thus a full accounting must consider the
overall effect on a multitude of outcomes. Second, there are a host of
stigmatizing circumstances that need to be considered in studying a
particular outcome. Thus a full assessment of the impact of stigma on
such an outcome must recognize that many stigmatizing circumstances
contribute to that outcome and not just the one selected for the
particular study in question. Thus when viewed broadly, stigma processes
likely play a major role in life chances.
Why Stigma Matters for Public Health
Health and “life
itself” were included in the list of so called life chances considered
above. As a consequence, along with access to jobs, housing, schools
and social connections we would expect stigma to have a powerful
influence on health. In this regard it is useful to consider the effect
of disease-related stigma on 1) the etiology of diseases and health
conditions other than the stigmatized condition and 2) on the course and
outcome of the stigmatized medical condition.
Stigma As a Social Cause Of Disease
Stigma and Stress.
An important way in which stigma can cause disease is by generating
stressful circumstances and compromising a person’s ability to cope with
those circumstances. In this scenario we are thinking of the impact of
the stigma of one illness on the likelihood of developing other
illnesses. One way to think about stigma-induced stress is through
blocked striving. To the extent that discrimination occurs through one
of the broadband mechanisms we described above — direct discriminatory
behavior by others, structural discrimination or discrimination that
operates through the stigmatized person — the stigmatized person is held
back and receives fewer of the good things and more of the bad things
our social and economic system has to offer. This blocked striving has
been posited as an important source of strain in people’s lives that has
harmful consequences for mental and physical health. Another way to
think about the generation of stress is to recognize that discrimination
produces stressful events — bad circumstances that threaten security.
For example, when community-based treatment facilities for people with
mental illnesses are located in poor, disorganized and dangerous
sections of the city people with mental illness are placed at higher
risk of excessive noise, deteriorated housing and crime victimization.
A third way in which stigma induces stress is through the strain that
comes with having to cope with the possibility of being stigmatized.
For example social epidemiologist Sherman James puts forward the concept
of what he calls “John Henryism” — the tendency for some African
Americans to work extremely hard and with great pressure to disprove the
stereotype of laziness and inability. According to James et al. (1984),
under some conditions this coping effort bears costs in the form of
hypertension. Finally, stigma can erode generic coping resources such as
self-esteem and self-efficacy. While stigma does not always harm these
coping resources it frequently does — sometimes dramatically so (Link et
al. 2001). To the extent that it does, stigma will compromise coping
capacity and influence stress-related outcomes even if the origin of the
stressful exposure has nothing to do with stigma or discrimination.
Stigma as a
Fundamental Cause of Disease. Link and Phelan (1995, 2000) propose that
some social conditions have a persistent connection with disease because
they determine exposure to risk and protective factors no matter what
the risk and protective factors are in a given place or at a given
time. This is one reason why socioeconomic status has had such a robust
association with disease and death across historical periods that differ
so dramatically in the risk and protective factors, diseases and health
care systems — people with more resources of knowledge, money, power,
prestige and social connections are better able to avoid risks and adopt
protective strategies no matter what these factors happen to be at a
given time. SES is a “fundamental cause” in the sense that it generates
and regenerates mechanisms that link it to disease. Similarly, through
mechanisms of discrimination, stigma places a person at a significant
social disadvantage with respect to knowledge, money, power, prestige,
and social connections and to the extent that is does, it influences
access to protective factors and exposure to risk factors so as to shape
patterns of disease and death. And like SES, stigma will have this
effect no matter what the risk and protective factors are in a given
place or time. To make this concrete, consider once again, the example
of the placement of treatment facilities for people with serious mental
illnesses in the poorest, most disorganized sections of our cities
because of stigma-related Not In My Back Yard (NIMBY) sentiments. These
disadvantaged communities tend to have higher rates of crime, more
pollution, higher rates of infectious disease, and inadequate medical
care. People with mental illnesses will receive less of the things that
are good for health and more of the things that are bad for health as a
consequence. Repeat this circumstance over the range of circumstances
that influence health and one is led to the prediction that stigmatized
persons are likely to experience worse health because of stigma.
Stigma Shapes Course and Outcome of Disease
The framework we
have in mind is that a person develops an illness and then the stigma
associated with that illness influences both the clinical course of the
condition and outcomes such as social and occupational functioning.
One major way in
which course and outcome can be influenced is through the same kind of
stigma-related stressful circumstances discussed above. To the extent
that stress is involved in relapses or exacerbations of a condition any
stigma processes that generate stress will contribute in exacerbations
of relapses of the condition in question.
A second major way
in which stigma can influence course and outcome is through access to
effective treatment. One very important way in which access to
treatment is blocked is when people fear being identified and labeled as
having a stigmatizing condition and then delay or avoid seeking
treatment when they develop such a condition. Similarly someone who has
already been identified and labeled may seek to distance themselves from
the stigmatizing label by avoiding treatment and thereby becoming
noncompliant with treatment regimens. When either of these processes
operates, people miss the benefits of effective treatments. A second
way stigma may influence access to treatment is by creating undesirable
conditions in treatment settings that make seeking help far less
desirable than it would otherwise be. For example there exists a
tremendous fear of people with psychosis that is out of proportion to
the actual risk that people with psychosis pose (Link et al. 1999). To
the extent that this fear increases the need for guards, locked wards,
searches, barbed wire and the like stigma produces very negative
circumstances in treatment settings that could easily make people want
to avoid those settings. Similarly, if less money is given to treatment
of stigmatized illnesses the facilities where treatment is provided may
not be as pleasant, clean or safe as they should be, thereby creating
substantial disincentives for attending or attending regularly. A third
way stigma influences access to effective treatment can only be
recognized by thinking broadly across diseases and time. Reasoning from
this vantage point we see that it is possible that a stigmatized illness
may have received less attention over the years with fewer research and
treatment dollars being allocated to that disease. As a consequence the
effectiveness of treatment for the disease lags behind the effectiveness
of treatment for other diseases. Thus, when people develop a
stigmatized illness they receive less effective care than they would
have received if the disease they developed were not a stigmatized one.
What Do We Need to Know
In presenting a
review and conceptual analysis of stigma our goal has been to contribute
to a fuller appreciation of the possible impact of stigma on people’s
lives. Although stigma research is definitely on the rise, and even
though this conference represents an important indication of an upswing
in concern at the international level, the claims we make about the
broad impact of stigma on health and well being represent a declaration
concerning the fundamental importance of stigma processes. If stigma is
indeed as important as we claim, it has been and continues to be a
dramatically under-emphasized and under addressed phenomenon. In light
of this, it is critically important for research to examine empirically
some of the possibilities we presented. In some cases there exists
relatively strong evidence to support connections between stigma and
negative health consequences, in other instances the connections we drew
were simply reasonable possibilities in need of empirical
investigation. Because of this limited coverage it is clear that we
need more basic research on stigma and its health consequences to fill
in these areas of uncertainty.
In addition to basic
research, at least two types of evaluation research are needed. The
first is the familiar and critically important approach of research that
evaluates carefully designed intervention programs. In studies like
these investigators devise interventions based upon current knowledge
and do rigorous evaluations of impact to determine whether the
intervention is, in fact, effective. Much more research of this kind is
needed, particularly in the area of the health consequences of stigma.
But another type of evaluation research is also needed. Efforts to
address stigma are not the exclusive domain of professional
psychologists, sociologists or social workers. Many anti-stigma
campaigns are in some ways social movements carried out by interests
groups, concerned citizens or by the people who are stigmatized
themselves. Whether focused on health conditions or other circumstances
social movements can have enormous impacts. Research is needed so that
we can comprehensively assess the impact of the anti-stigma efforts that
are currently underway.
Finally, if future
research is to capture the full impact of stigma related processes the
agenda needs to be broad. We run a real risk of underestimating the
overall impact of stigma by parceling our efforts up into “the stigma of
this and the stigma of that.” While some specialization of this sort is
both necessary and desirable it will be important to at least keep a
broader vision so that the overall impact of stigma on public health is
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