Psychiatric Illness and Family Stigma
by Jo C. Phelan, Evelyn J. Bromet, and Bruce Q. Link
(Lamy 1966; Tringo 1970; Albrecht et al. 1982; Link
1982, 1987; Link and Cullen 1983; Link et al. 1987,
1989; Perm et al. 1994). Largely as a result of advocacy
by groups like the National Alliance for the Mentally 111
(NAME), there is growing awareness that stigma affects
not only people with mental illnesses but their families as
well (Sommer 1990). Such a process, in which a person is
stigmatized by virtue of his or her association with
another stigmatized individual, has been referred to as an
"associative" (Mehta and Farina 1988) or "courtesy"
(Goffman 1963) stigma. Personal accounts, many of
which has been printed in Schizophrenia Bulletin, suggest
that associative stigma is viewed as a serious problem by
many family members (e.g., Willis 1982; Dearth et al.
1986; Group for the Advancement of Psychiatry 1986;
Lanquetot 1988; Gullekson 1992; Anonymous 1994).
Despite increasing awareness and discussion of the
problem, family stigma—unlike the broader topic of family burden (Kreisman and Joy 1974; Fisher et al. 1990)—
has received relatively little attention from empirical
researchers. The studies that do exist, however, suggest
that stigma has long been and continues to be a problem
for families of psychiatric patients. Four decades ago,
Yarrow et al. (1955) discovered that feelings of rejection
and stigmatization and attempts at secrecy and concealment were common among their sample of wives of firstadmission psychiatric patients. One woman expressed her
fears about the impact of stigma on her husband and son:
Abstract
Considerable research has documented the stigmatization of people with mental illnesses and its negative
consequences. Recently it has been shown that stigma
may also seriously affect families of psychiatric
patients, but little empirical research has addressed
this problem. We examine perceptions of and reactions
to stigma among 156 parents and spouses of a population-based sample of first-admission psychiatric
patients. While most family members did not perceive
themselves as being avoided by others because of their
relative's hospitalization, half reported concealing the
hospitalization at least to some degree. Both the characteristics of the mental illness (the stigmatizing mark)
and the social characteristics of the family were significantly related to levels of family stigma. Family members were more likely to conceal the mental illness if
they did not live with their ill relative, if the relative
was female, and if the relative had less severe positive
symptoms. Family members with more education and
whose relative had experienced an episode of illness
within the past 6 months reported greater avoidance
by others.
Key words: Family, stigma.
Schizophrenia Bulletin, 24(1):115-126,1998.
Webster's New Twentieth Century Dictionary (1983)
I live in a horror—a perfect horror—that some people
will make a crack about it to Jim (child), and suppose
after George gets out everything is going well and
somebody throws it up in his face. That would ruin
everything. I live in terror of mat—a complete terror
of that. (p. 34)
defines stigma as "something that detracts from the character or reputation of a person, group, etc.; a mark of disgrace or reproach; a mark, sign, etc. indicating that something is not considered normal or standard." Similarly,
Goffman (1963) defines stigma in terms of undesirable,
"deeply discrediting" attributes that "disqualify one from
full social acceptance" (preface) and motivate efforts by
the stigmatized individual to hide the mark when possible.
Considerable research has documented stigmatization and
its negative consequences for people with mental illnesses
Reprint requests should be sent to Dr. J.C. Phelan, Division of
Sociomedical Sciences, Columbia University School of Public Health,
600 W. 168th St, New York, NY 10032.
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Schizophrenia Bulletin, Vol. 24, No. 1, 1998
J.C. Phelan et al.
Another woman described her efforts to conceal her husband's hospitalization:
eralizations from past levels or on assumptions of cultural
change. Generalization from nonrepresentative samples,
such as NAMI membership, is equally risky, since selfhelp groups may both attract family members who experience especially high levels of stigma and sensitize members to stigma.
To understand the sources of stigma and how to
reduce it, research must also examine the factors associated with variations in stigma. We suggest several factors
that should affect levels of experienced stigma and the
fear and expectation of stigma. Certainly, characteristics
of the stigmatizing mark itself (i.e., the relative's mental
illness), which directly affect the degree of stigma experienced by the ill relative, should also indirectly affect the
amount of stigma that "spills over" onto family members.
In this regard, there is evidence that both symptomatic
behavior and psychiatric labels themselves (referred to
collectively as "illness-related factors") affect levels of
stigma directed at the ill person (Gove 1982; Link and
Cullen 1990). Regarding symptomatic behavior, the
severity and number of symptoms would clearly be
expected to increase the family members' fear of stigma
as well as the actual stigmatizing responses of others.
Further, because psychosis is particularly incomprehensible, disturbing, frightening, and corresponds most closely
with public conception of mental illness (Star 1952), positive symptoms of psychosis should be particularly stigmainducing.
There is also evidence that psychiatric labels themselves can elicit stigmatizing responses above and beyond
those attributable to symptomatic behavior (Link and
Cullen 1983; Link et al. 1987; Riskind and Wahl 1992).
Certainly, the fact of psychiatric hospitalization or the
presence of a psychiatric diagnosis are the most dramatic
and potentially stigmatizing labels. However, among psychiatric patients, all of whom have been labeled in these
fundamental ways, more subtle variations in labeling may
also influence stigma. For example, to the extent that
"schizophrenia" is recognized as a descriptor of severe
psychotic conditions (as suggested by the common usage
of the colloquial terms "schizo" or "schizoid"), that term
and related diagnostic terms such as schizophreniform
and schizoaffective may elicit more stigmatizing
responses than other diagnostic labels such as major
depression or bipolar disorder and the more common
terms "depressed" and "manic." However, contrary to
expectation, one study of a sample of college undergraduates (Penn et al. 1994) found a label of depression to elicit
more negative assessments of a vignette subject's skills
than did a label of schizophrenia.
Another labeling factor that may influence the stigma
attached to the mental patient and consequently to his or
There are two girlfriends who know about it. One
couple . . . knows about it. He has been to see a psychiatrist and I know they would understand. There's
another girlfriend . . . and she knows about it. But
I've cut off all our other friends. I didn't tell them
that I was giving up the apartment and I had the
phone disconnected without telling anyone so they
don't know how to get in touch with me. (p. 36)
A few years later, Freeman and Simmons (1961) posed
several structured questions focusing on the issue of concealment to a large sample of family members living with
recently discharged patients. Unlike Yarrow et al.,
Freeman and Simmons found problems with stigma to be
reported fairly infrequently. However, when Thompson
and Doll (1982) repeated Freeman and Simmons' questions 20 years later with a similarly selected sample of
family members, they found that nearly half die sample
endorsed at least one of the concealment items—about
twice as many as in Freeman and Simmons' study.
Recently, Wahl and Harman (1989) found perceptions of
stigma to be widespread among a large sample of members who attend NAMI, and Weinberg and Volger (1990)
found that many of the Alanon members they interviewed
were apprehensive about people finding out about their
spouses' alcohol problems.
Other studies suggest that family members' apprehensions about stigma are well founded. For example,
Lefley's (1987) study of mental health professionals with
mentally ill relatives found that these professionals often
heard colleagues make derogatory comments about the
families of psychiatric patients and that many concealed
their relative's illness from colleagues. Other studies have
found that high school students, college students, and
mental health workers perceive the relatives of individuals with mental illness in negative terms (Mehta and
Farina 1988; Burk and Sher 1990). These studies suggest
that stigma is a problem for families of people with mental illnesses, but clearly more research is needed. Aside
from the overall paucity of information, most of the data
provided by these studies is either quite old (i.e., Yarrow
et al. 1955; Freeman and Simmons 1961) or based on
highly selected samples of family members (i.e., Lefley
1987; Wahl and Harman 1989; Weinberg and Volger
1990). The fact that Thompson and Doll found more
endorsement of Freeman and Simmons' stigma items in
1982 than the original audiors did in 1961 calls into question the idea that mental illness is becoming more
accepted as time goes on. It also makes clear that estimates of current levels of stigma cannot be based on gen-
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Psychiatric Illness and Family Stigma
latter study and to family members' concerns about
stigma in the former.
In this article, we present data on stigma as reported
by parents and spouses of psychiatric patients approximately 6 months after the patient's first psychiatric hospitalization and on the relationship of stigma to a number of
illness-related and family-related factors. Our contribution
is significant because we present up-to-date data based on
a representative sample of family members drawn from an
epidemiological study of first-admission patients. We
measure family stigma in terms of the two core dimensions addressed in previous research: family members'
perceptions of being rejected and treated differently by
others and their reactions to stigma, specifically their
secrecy about the hospitalization. From our earlier discussion, we derive the following hypotheses regarding the
overall level of stigma reported by family members and
factors associated with variations in stigma.
Hypothesis 1. Notwithstanding the paucity of
recent, methodologically sophisticated research on the
issue, the findings of previous studies lead us to expect a
substantial proportion of family members to report both
secrecy and preceptions of rejection.
Hypothesis Set 2. We expect greater family stigma
to be associated with more severe and protracted symptoms, longer initial hospitalizations, and recurrent
episodes during the 6-month period between hospitalization and followup interview.
Hypothesis Set 3. While our sample does not test
labeling effects in their potentially strongest form, that is,
the presence versus the absence of a psychiatric label, we
speculate and assess the possibility that more fine-grained
variations in labeling may be associated with the level of
stigma reported by family members. While acknowledging the weak empirical basis for the above hypotheses, we
hypothesize that facility diagnoses of schizophrenia,
schizophreniform, and schizoaffective disorders will be
associated with more stigma than other diagnoses and that
hospitalization in a State or Veterans Affairs facility will
be associated with greater reports of stigma on the part of
family members than hospitalization in a community or
university facility.
Hypothesis Set 4. Finally, we expect to find that
characteristics of the family member and the patient, and
the relationship between them, will be associated with
levels of reported stigma. Because younger patients and
male patients may elicit greater fears of dangerousness or
acting-out behavior, we expect their family members to
report greater problems with stigma when the patient is
younger and male. We expect relatives living with
patients to conceal less, out of necessity, and to experience more avoidance. Finally, based on previous research,
her family, is the type of institution in which the patient
was treated. Because large and often geographically isolated State-run institutions seem to fit closely the public
stereotype of a place where "crazy" people are put away,
hospitalization in such institutions may elicit more stigma
than hospitalization in community or university-sponsored institutions.
In addition to these illness-related factors, a number
of factors extraneous to the stigmatizing mark—factors
related to the social background and situation of the mental patient and his or her family and to the relationship
between the patient and family member—may affect not
only the extent to which the patient is stigmatized, but
also the degree to which stigma spills over onto and is
perceived by the family member. We refer to these characteristics, collectively, as family-related factors. For example, because perceived dangerousness appears to be a core
component of the stigma of mental illness (Link et al.
1987), factors such as being young and male, by heightening perceptions of potential dangerousness, may increase
the extent to which the patient, and in turn the family
members, are stigmatized.
In addition, the family member's relationship to the
patient may affect the extent to which the patient's stigma
is transferred to the family member. For example, family
members who live with the ill relative can expect to be
exposed to more stigma than those who do not, because
their acquaintances are more likely to know about their
relative's illness and because interaction heightens the
acquaintance's probability of contact with the patient
Similarly, spouses may be exposed to greater stigma
than parents because their social networks and the ill relative's overlap to a greater extent. Consistent with this
idea, Freeman and Simmons (1961) found that spouses of
recently released mental patients expressed more concern
about stigma than did parents. Alternative predictions
might be drawn concerning the relationship of family
socioeconomic status (SES) to stigma. Because survey
data have found higher SES to be associated with more
tolerant attitudes toward persons with mental illnesses
(Freeman 1961; Dohrenwend and Chin-Shong 1967), one
might expect less concern with stigma in higher-SES families. On the other hand, one might expect greater concern
with stigma among higher-status families for two reasons:
First, they may feel they have more status or reputation to
lose by having mental illness in the family, and second,
they may be more aware of the putative role of families in
the etiology of mental illness and thus have greater fear of
being blamed by others. Two sets of empirical findings
(Freeman and Simmons 1961; Angermeyer et al. 1987)
are consistent with the latter two arguments—social class
positively related to patients' concerns about stigma in the
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Schizophrenia Bulletin, Vol. 24, No. 1, 1998
J.C. Phelan et al.
we hypothesize that higher SES relatives and spouses, as
opposed to parents, will report more problems with
stigma.
Table 1. Characteristics of significant others
Interviewed at 6-month followup (n = 195)
Methods
Patient Sample. Data come from a study of the epidemiology of psychosis in Suffolk County, New York
(eastern Long Island). Patients were identified from intake
assessments by liaisons at 10 inpatient psychiatric facilities, including 6 community hospitals, a university hospital, a Veterans Affairs hospital, and State adult and children's psychiatric centers. Inclusion criteria were as
follows: age 15 to 60 years, residence in Suffolk County,
first psychiatric hospitalization (other than for substance
problems) less than 6 months previously, clinical evidence
of psychosis, absence of clear organic etiology for psychosis, and absence of mental retardation. The baseline
response rate for the series described in this report was 72
percent; 90 percent were successfully followed up after 6
months (n = 278). Nonparticipants were more likely to be
older and female (Bromet et al. 1992). No demographic
differences were found between patients with and without
followup information. Measures of patients' psychiatric
status are described below as illness-related factors.
Parent, lives with patient
Parent, does not live with patient
Spouse
Other
48.4%
23.2%
14.7%
13.7%
Women
81.0%
Education
Less than high school
High school
Some college
College graduate
22.9%
36.5%
23.5%
17.0%
Age, median (yrs)
49
Data Collection. Baseline and 6-month interviews were
conducted in person with patients and over the telephone
with significant others by rigorously trained, master'slevel mental health professionals. When possible, and in
most cases, a single interviewer was assigned to a subject
and conducted all interviews with that patient and family
members. The interviewer administered all questions and
completed the rating scales. A psychiatrist or training
supervisor attended 10 percent of the patient interviews
and rated all diagnostic items and symptom ratings independently, with good interrater agreement. A detailed
description of the sample, data collection procedures, and
reliability results can be found in Bromet et al. (1992).
Family Member Sample. Patients were asked for permission to interview a significant other (preferably the
spouse if the patient was married or the mother if not).
Significant-other interviews were obtained for 86 percent
of patients at baseline and for 70 percent at followup;
patient refusal was the main reason for noncompletion.
This report is based on the followup interview; characteristics of significant others interviewed at followup are
reported in table 1. Not included in table 1 is ethnicity,
which was assessed only for patients: 79 percent were
white, 14 percent African-American, and 7 percent
Hispanic. The relatively low number of minority patients
reflects the demographic makeup of Suffolk County,
which is approximately 90 percent white. Patients for
whom 6-month significant-other interviews were completed did not differ from those with no significant-other
interviews in research or facility diagnosis, type of facility, age, gender, education, living arrangement (i.e., lived
alone, with family, or with someone else), or household
occupational status. However, the interview completion
rate was significantly lower among significant others of
African-American (40%) as opposed to Hispanic (72%)
or white (73%) patients. This report is based only on parents and spouses who completed a full significant-other
interview (n = 156).
Measures.
Family stigma. Relatives were asked the following
open-ended questions, from the Social Adjustment Scale
(Schooler et al. 1979): Do people outside the family know
that R has been hospitalized? How did they find out?
(How many people did you tell?) How did they react? In
the past 6 months, did you feel that people have avoided
you or treated you differently because they know about
R's condition? (Have any of them stopped talking to you
or stopped visiting you? How much of a problem is it?)
Based on their responses, interviewers made ratings for
concealment and avoidance by others (see table 2 for rating categories).
Illness-related factors. DSM-III-R (American
Psychiatric Association 1987) facility diagnosis was
recorded on the discharge summary. For the purposes of
this article, diagnoses were grouped into schizophreniarelated disorders (schizophrenia, schizoaffective disorder,
and schizophreniform disorder), bipolar disorder with
psychosis, major depressive disorder with psychosis, and
other disorders. Psychiatric hospitals were separated into
State and Veterans Affairs facilities versus community and
university facilities.
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Schizophrenia Bulletin, Vol. 24, No. 1, 1998
Psychiatric Illness and Family Stigma
Table 2. Interviewer ratings of family member's reported concealment of the patient's hospltallzatlon
and of being avoided or treated differently by others because of the patient's condition
Parent not
living with
patient
Overall
Spouse
Parent living
with patient
Concealment
No effort to conceal
Told a number of people
Only close friends and neighbors know
Only immediate family knows
Told no one
(n-156)
50.0
11.5
25.6
(n = 91)
55.6
11.1
18.5
7.4
7.4
(n = 38)
52.7
15.4
20.9
7.7
3.3
(n=27)
36.6
2.4
39.0
7.3
7.3
Avoidance by others
No one avoids or treats differently
Occasional avoidance by a few people
Fairly regular avoidance by a number of people
Great avoidance by a number of people
Great avoidance and exclusion
(n=146)
84.1
10.0
4.1
0.7
1.4
(n = 87)
72.0
20.0
8.0
0.0
0.0
(n = 34)
86.2
8.0
3.4
0.0
2.3
(n=25)
88.2
5.9
2.9
2.9
0.0
in
5.1
Several symptom measures were assessed at baseline
and followup: number of psychotic symptoms rated as
present and clinically significant on the Structured
Clinical Interview for DSM-III-R (SCID; Spitzer et al.
1992); the mean of five global ratings of positive symptoms, as assessed by the Schedule for Assessment of
Positive Symptoms (SAPS; Andreasen 1984); the mean of
negative symptoms, as assessed by the Schedule for
Assessment of Negative Symptoms (SANS; Andreasen
1982); and the total score from the Brief Psychiatric
Rating Scale (BPRS; Overall and Gorham 1962). These
indicators of symptoms overlap to varying degrees, but
each provides unique information. The number of psychotic symptoms as rated on the SCID provides an overall
measure of symptoms directly contributing to diagnosis
with a psychotic disorder, while the SAPS and SANS separate symptoms into positive and negative types. The
BPRS includes a broader range of psychiatric symptoms,
not necessarily reflective of psychotic disorders.
Illness chronicity was measured with a dichotomous
variable indicating whether there was evidence of psychotic symptoms more than 1 year before initial hospitalization. Illness recency was measured with a dichotomous
variable indicating whether or not the baseline episode
continued or a new episode occurred during the followup
interval.
Family-related factors.
the patient (parent vs. spouse), and whether the relative
lives with the patient The patient's education level was
not included because many had not yet completed their
schooling, and ethnicity was not included because of the
relatively small number of minority patients and their
varying interview completion rates.
Analysis. Because the two perceived stigma measures
were highly skewed, to perform bivariate and multivariate
analyses, both measures were dichtomized to approach a
median split as nearly as possible. Accordingly, concealment was dichotomized into "no concealment" versus
other categories (told a number of people, only close
friends and neighbors, only immediate family, or no one),
and perceived avoidance was divided into "no one avoids
or treats differently" versus other categories (occasional
avoidance, fairly regular avoidance by a number of people, great avoidance by a number of people, and great
avoidance and exclusion). Bivariate analyses used chisquare tests for stigma risk factors that are categorical
variables and /-tests for those that are continuous. To
assess whether significant bivariate associations resulted
from confounding by other measured variables, we
included all independent variables whose bivariate associations with the respective stigma measure were statistically significant in logistic regressions predicting concealment and perceived avoidance. To increase our confidence
of having adequately controlled for confounding variables, we use the 0.10 probability level as the criterion for
including independent variables in the logistic regressions; however, we only interpret multivariate associations that are significant at p < 0.05.
These factors include
patient's age (dichotomized at the median age of 30—
results are not notably changed by analyzing age as a continuous variable) and gender, relative's educational attainment (at least some college vs. others), household occupational status (white vs. blue/pink collar), relationship to
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Schizophrenia Bulletin, Vol. 24, No. 1, 1998
J.C. Phelan et al.
sional avoidance by a few people, and 4 percent felt regular avoidance by a number of people. A visual comparison
of the subgroups suggests that concealment is greatest
among parents not living with the patient, but that perceived avoidance is greatest among spouses. The statistical significance of these differences is assessed below.
Results
Stigma: Univariate Results.
Concealment and perceived avoidance (Hypothesis 1). Table 2 reports whetheT concealment and
avoidance by others would be widespread among family
members. We report concealment and avoidance ratings
for all relatives combined and separately for spouses, parents living with the patient, and parents not living with the
patient. Overall results show that half the relatives were
rated as making no effort to conceal the hospitalization,
while half reported making some effort at concealment
Almost 40 percent either told no one or limited communication about the hospitalization to their circle of close
friends, neighbors, and family. Avoidance by others was
considered not applicable for the 5 percent who told no
one about the hospitalization. Among the remaining 95
percent who had told someone, a large majority reported
no avoidance by others, although 10 percent felt occa-
Factors Associated With Variations in Stigma:
Bivariate Results.
Stigma and psychiatric symptoms (Hypothesis Set
2). Our second set of hypotheses concerned the association between reported family stigma and various indicators
of psychiatric symptoms. Bivariate results are reported in
table 3. Concerning the severity of symptoms, table 3 (top
panel) shows that symptomatology at followup was unrelated to stigma, but that baseline symptoms were significantly associated with both stigma variables. As hypothesized, a greater number of SCID psychotic symptoms were
associated with greater perceived avoidance (p < 0.05).
Table 3. Bivariate relationship of reported concealment (n = 156) and avoidance by others (n = 146)
to symptom-related factors
Mean symptom rating
Concealment
Perceived avoidance
Low
High
Low
High
Symptoms at baseline
Psychotic symptoms (SCID)
Positive symptoms (SAPS)
Negative symptoms (SANS)
BPRS
2.32
1.66
1.45
37.8
2.03
1.371
1.111
38.4
2.08
1.55
1.38
37.6
3.091
1.58
1.21
41.12
Symptoms at 6 months
Psychotic symptoms (SCID)
Positive symptoms (SAPS)
Negative symptoms (SANS)
BPRS
0.35
0.44
0.93
27.5
0.56
0.55
0.98
29.3
1.10
0.49
1.28
28.0
1.03
0.43
1.10
29.2
Symptom severity
High on
concealment, %
Symptom course
High on
avoidance, %
Length of initial hospitalization
26 days (median) or longer
s 25 days
32.9
45.7
Psychotic symptoms > 1 year
Psychotic symptoms < 1 year
42.0
38.5
15.4
16.3
10.0
17.7
Episode during 6-month interval
Yes
No
47.2
34.7
27.1
10.8 1
Note.—Analysis based on overall family-member sample, including spouses, parents living with the patient, and parents not living with the
patient. SCID - Structured Clinical Interview for DSM-lll-fl (Spitzer et al. 1992); SAPS - Schedule for the Assessment of Positive
Symptoms (Andreasen 1984); SANS - Schedule for the Assessment of Negative Symptoms (Artdreasen 1982); BPRS = Brief Psychiatric
Rating Scale (Overall and Gorham 1962).
1
2
p < 0.05.
p<0.10.
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Schizophrenia Bulletin, Vol. 24, No. 1,1998
Psychiatric Illness and Family Stigma
compared with a third of those who lived with the patient
(p < 0.01). Counter to our expectations, however, those
who lived with the patient were not significantly more
likely to report avoidance. Very weak support was found
for our hypothesis that spouses would report greater
stigma than parents: spouses and parents did not differ
significantly in terms of concealment. Spouses were twice
as likely to report avoidance as parents, but this difference
was significant only at the p < 0.10 level. Our expectations concerning the patient's demographic characteristics
were not supported. Neither concealment nor perceived
avoidance was related to the patient's age. The patient's
gender was not significantly associated with the degree of
avoidance reported by the family member. The association between the patient's gender and concealment was
reversed from what we predicted: relatives of female
patients reported greater concealment (p < 0.10).
(Higher BPRS ratings were also associated with greater
perceived avoidance, but only at the 0.10 level.) However,
contrary to our expectation, more severe positive and negative symptoms were associated with less, not greater,
concealment (p < 0.05). Concerning the course of illness
(bottom panel), neither length of initial hospitalization nor
the chronicity of symptoms before hospitalization were
related to reported stigma. However, those whose relative
experienced an episode during the followup interval were
2.5 times as likely (p < 0.05) as other family members to
report avoidance.
Stigma and psychiatric labels (Hypothesis Set 3).
Third, we hypothesized that reported family stigma would
be associated with variations in the types of psychiatric
labels applied to the patients. Bivariate results are reported in table 4. Contrary to our expectations, neither
facility diagnosis nor type of facility was related to either
measure of family stigma at the bivariate level.
Consequently, neither variable was included in the logistic
regression.
Stigma and family-related factors (Hypothesis Set
4). Fourth, we hypothesized that social characteristics of
the patient and his or her family and aspects of the relationship between the patient and the family members—
factors extraneous to the illness itself—would be associated with the degree of stigma reported by family
members. Bivariate results, reported in table 5, indicate
some support for our hypotheses concerning SES and perceived stigma. Higher educational attainment was associated with greater concealment (p < 0.05). Half the relatives with at least some college education were rated high
on concealment, compared widi 30 percent of those with
less education. There were also positive associations
between education and perceived avoidance and between
occupational status and concealment (p < 0.10). As predicted, relatives living with a patient concealed the hospitalization less. More than half the relatives who lived
apart from the patient were rated high on concealment,
Factors Associated With Variations in Stigma: Multivariate Results. Multivariate results are reported in
table 6. Equations include only those predictor variables
that were associated with the relevant stigma measure at
p< 0.10. Table 6 shows that both symptom-related factors
and family-related factors, but not labeling-related factors
(not significant in bivariate analyses), remain significantly
associated with both measures of perceived stigma at the
multivariate level.
Concealment was significantly higher among relatives
of patients with less severe positive symptoms at baseline
(p < 0.05). For each decreasing point along the 6-point
SAPS scale, the odds of concealment were increased by
about two-thirds (odds ratio = 1.65). Concealment was
also significantly higher among relatives of female patients
(again contrary to our prediction; p < 0.05). The odds of
concealing the hospitalization of a female relative were
more than twice those of concealing a male's (odds ratio =
2.27). Finally, relatives who did not live with the patient
were significantly more likely to report high levels of con-
Table 4. Bivariate relationship of reported concealment (n = 156) and avoidance by others (n = 146)
to psychiatric labeling factors
High on
concealment, %
High on
avoidance, %
Facility diagnosis
Schizophrenia-related
Bipolar with psychosis
Major depression with psychosis
Other
35.0
42.9
35.0
40.0
15.4
15.0
25.0
13.4
Type of hospital
State or Veteran Affairs Medical Center
Community or university
42.0
30.6
15.8
15.6
Note.—Analysis based on overall family-member sample, including spouses, parents living with the patient, and parents not living with the
patient.
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Schizophrenia Bulletin, Vol. 24, No. 1, 1998
Table 5.
factors
J.C. Phelan et al.
Blvarlate relationship of reported concealment and avoidance by others to family-related
High on concealment, %
(n = 156)
High on avoidance, %
(n=146)
Family member's education
Some college
High school or less
50.0
29.41
21.6
11.22
Household occupation
White collar
Blue/pink collar
48.1
34.02
23.4
13.0
Relationship to patient
Parent
Spouse
39.5
33.3
13.2
28.02
' 32.5
56.43
17.1
11.4
46.7
33.32
12.5
17.8
36.2
39.8
15.1
16.1
Lives with patient
Yes
No
Patient's gender
Female
Male
Patient's age
a 30 years
< 30 years
Note.—Analysis based on overall family-member sample, including spouses, parents living with the patient, and parents not living with the
patient.
1
p<0.05.
2
p<0.10.
3
p < 0.01.
Table 6. Logistic regression predicting reported concealment and avoidance by others from illnessand family-related factors
Predictors of high concealment (n = 143)
Severity of positive symptoms (baseline)
Severity of negative symptoms (baseline)
Family member lives with patient
Family member attended college
White collar household
Female patient
Predictors of high avoidance by others (n = 133)
Number of psychotic symptoms (baseline)
High rating on BPRS
Active illness in followup interval
Family member attended college
Family member is patient's spouse
Unstandardlzed coefficients
SE
-0.503 1
-0.305
-1.072 1
0.293
0.540
0.8251
(0.227)
(0.233)
(0.433)
(0.425)
(0.426)
(0.395)
0.084
0.020
1.0781
1.0381
0.604
(0.138)
(0.033)
(0.534)
(0.528)
(0.592)
Note.—Analysis based on overall family-member sample, including spouses, parents living with the patient, and parents not living with the
patient. Reduced n due to missing data on independent variables for 13 subjects. BPRS =• Brief Psychiatric Rating Scale (Overall and
Gorham 1962); SE - standard error.
1
p<0.05.
cealment (p < 0.05). The odds of concealment were nearly
three times as great (odds ratio - 2.92) when the family
member did not live with the ill relative.
Perceived avoidance was significantly higher among
family members whose relatives had experienced an
episode during the followup interval (p < 0.05). The odds
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Psychiatric Illness and Family Stigma
Schizophrenia Bulletin, Vol. 24, No. 1,1998
of reporting a high degree of avoidance were nearly three
times as great when there was an active episode of illness
in the followup interval (odds ratio = 2.94). High levels of
avoidance by others were also reported significantly more
often among family members with more education (p <
0.05). The odds of reporting high levels of avoidance
were nearly three times as great when the family member
had attended college (odds ratio = 2.86).
worth noting that our results, being limited to psychiatric
patients and their families, can describe only variations
within such a treated and labeled population. A second
reason that facility diagnosis may not have been a stigmatizing label is that relatives may have been unaware of the
diagnosis. No data were available concerning either relatives' or patients' knowledge of the diagnosis assigned by
the hospital.
Both psychiatric symptoms and family-related factors
were related to stigma. In the multivariate analysis, concealment was higher among relatives of female patients,
of patients with less severe positive symptoms at baseline,
and who lived apart from the patient. We had expected
greater concealment when symptoms were more severe,
but we found the opposite. In formulating our hypotheses
regarding concealment, we had reasoned that family
members' feelings of shame or fear of stigma would be
critical in determining the extent to which they concealed
their relative's hospitalization. However, the fact that significantly less concealment occurred when symptoms
were more severe and when the family member lived with
the patient points to the importance of necessity in disclosing information about the hospitalization. Families
with an ill relative living at home and exhibiting positive
psychotic symptoms surely find it more difficult to conceal the problem. Our results suggest that such practical
exigencies may be more important in determining the
extent of disclosure than family members' fears or other
motivations to conceal information about the hospitalization. It is unclear why concealment was greater for female
patients. Since our other results suggest that necessity
may be a major determinant of disclosure, we can speculate that males' symptomatic behavior is more visible or
salient, or that gender roles make it easier to explain a
woman's absence from public view.
Reported avoidance by others was associated, in the
multivariate analysis, with the relative's educational
attainment and the occurrence of episodes during the followup interval. These results suggest that illness- and
family-related factors influence the degree to which relatives are avoided or are perceived to be avoided by others.
The fact that less avoidance was perceived by family
members whose relative had no illness episodes during
the followup period suggests the possibility that avoidance by others may diminish significantly once the
patient's symptoms have subsided. Alternatively, it may
be that hospitalization causes an initial "weeding out" of
friends and relatives who do not wish to have contact with
the family of a mental patient, leaving a smaller social
network that remains relatively stable. Note that, while
baseline symptoms and occurrence of an episode during
the followup interval were associated with stigma, symp-
Discussion and Conclusions
The goal of this article was to fill a gap in knowledge by
providing current data concerning the stigma associated
with mental illnesses among relatives of a populationbased sample of first-admission psychiatric patients with
indications of psychosis. This sample allows us to assess
stigma early in treatment and to draw conclusions about
the larger population of family members with greater confidence than other recent studies based on less representative samples.
We found that about half the parents and spouses of
recently hospitalized patients reported some degree of
concealment about the hospitalization. Contrary to our
expectations, avoidance by others was fairly minimal, although in interpreting this finding it is important to remember that relatives actively forestall at least some avoidance
by concealing their relative's problem from others. Previous research (Yarrow et al. 1955) suggests that, when
possible, relatives avoid telling those from whom they
expect the most negative reactions. It should also be noted
that, to the extent that family stigma prevented either
patients or relatives from participating in the study, our
results underestimate problems related to stigma.
While many of our specific predictions concerning
the factors associated with perceptions of family stigma
were not supported, there was support for the idea that
stigma is related both to aspects of the mental illness itself
and to social factors extraneous to the illness. We were
surprised to learn that variations in facility diagnosis and
type of hospital, which we expected to affect stigma
through labeling processes, were not significantly related
to either concealment or perceived avoidance. The findings for hospital type are consistent with those of
Angermeyer et al. (1987), who expected perceptions of
stigma to be stronger among patients at a large State psychiatric hospital than among those on the psychiatric unit
of a university-affiliated hospital. These authors suggest
that the fact of psychiatric hospitalization, rather than the
type of facility, may be the decisive labeling factor. The
same argument can be applied to the negative findings for
facility diagnosis. This is an important point, and it is
123
Schizophrenia Bulletin, Vol. 24, No. 1, 1998
J.C. Phelan et al.
toms measured at followup were not. We believe this
lends validity to the stigma measures, suggesting that relatives' reports at followup are based on their experiences
and actions over the past several months, rather than on
the patient's current psychiatric state.
Our finding that higher educational attainment is
associated with greater perceived avoidance is consistent
with previous findings (Yarrow et al. 1955; Freeman and
Simmons 1961; Angermeyer et al. 1987) that higher SES
is associated with greater perceptions of stigma and more
extreme reactions to stigma among relatives. These findings might be interpreted in various ways: Higher-status
individuals may be more perceptive of actual rejection,
they may be overly sensitive and falsely interpret others'
behavior as rejection, or their presumably more highly
educated relatives and acquaintances may react to mental
Illness in more stigmatizing ways than do people with less
education. In any event, these results are particularly
intriguing in light of the fact that higher SES has also
been linked to more tolerant attitudes concerning mental
illness among the general population (Dohrenwend and
Chin-Shong 1967) and among relatives of former patients
(Freeman 1961). This raises the question of whether
highly educated people really have more enlightened attitudes toward mental illness or whether they are merely
more likely to express socially acceptable views.
Our findings as well as those of other researchers
suggest that stigma is a concern and a problem for families of discharged psychiatric patients. These findings
have implications for the aftercare of discharged patients
and for family counseling. They point to the potential
benefits of helping families acknowledge and accept their
concerns about stigma and of helping them cope with
rejection by others. Such interventions could potentially
reduce strain on family relationships and on die ill relative, which in turn should help the long-term adjustment
of the patient to the community and reduce the risk of
relapse. An additional red flag may be raised for the aftercare of patients who do not live with their families
because the desire to conceal the illness may motivate
families to withdraw social contact and social support.
Bear in mind the limitations of the conclusions that
may be drawn from our study. First, while this epidemiological sample does a notably good job of representing
people with psychosis admitted to psychiatric facilities in
Suffolk County, New York, this population is geographically restricted. In particular, ethnic minorities are underrepresented relative to the country as a whole, and the
representativeness of African-Americans was further
reduced by the low completion rate of significant-other
interviews among mat group. Second, in order to provide
descriptive data and to indicate trends in a relatively small
sample, we have reported a relatively large number of
separate chi-square and r-tests and have parenthetically
noted associations significant at the 0.10 probability level.
Some of these associations may have arisen by chance,
and readers should interpret the bivariate results tentatively. Our discussion and conclusions have been limited
to the multivariate results significant at the 0.05 level.
Despite these limitations, we believe some relatively
firm conclusions can be drawn from our data. Both characteristics of the illness and of the family appear to influence families' reactions to their relative's hospitalization
and their perceptions of other people's reactions. Disclosure of the relative's hospitalization seems to occur
largely when it is unavoidable. But we believe our most
important finding is that, although it may seem that we
live in an era in which mental illness is accepted as "a disease like any other," many people still feel the need to
conceal the fact of mental illness in their families.
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The Authors
Jo C. Phelan, Ph.D., is Assistant Professor, Division of
Sociomedical Sciences, Columbia University School of
Public Health, New York, NY. Evelyn J. Bromet, Ph.D.,
is Professor, Department of Psychiatry and Behavioral
Science, State University of New York at Stony Brook,
Stony Brook, NY. Bruce G. Link, Ph.D., is Associate
Professor, School of Public Health (Epidemiology),
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Acknowledgments
This research was supported in part by grants MH-44801
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Schizophrenia: Questions and Answers
What is schizophrenia? What causes it? How is it treated?
How can other people help? What is the outlook? These
are the questions addressed in a booklet prepared by the
Schizophrenia Research Branch of the National Institute
of Mental Health.
Directed to readers who may have little or no professional training in schizophrenia-related disciplines, the
booklet provides answers and explanations for many commonly asked questions of the complex issues about schizophrenia. It also conveys something of the sense of unreality, fears, and loneliness that a individual with
schizophrenia often experiences.
The booklet describes "The World of the Schizo-
phrenia Patient" through the use of analogy. It briefly
describes what is known about causes—the influence of
genetics, environment, and biochemistry. It also discusses
common treatment techniques. The booklet closes with a
discussion of the prospects for understanding schizophrenia in the coming decade and the outlook for individuals
who are now victims of this severe and often chronic
mental disorder.
Single copies of Schizophrenia: Questions and
Answers (DHHS Publication No. ADM 90-1457) are
available from the Public Inquiries Branch, National
Institute of Mental Health, Room 7C-02, 5600 Fishers
Lane, Rockville, MD 20857.
126