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Changing the
Stigma of and Levels of Awareness for Hepatitis and HIV/AIDS
by
James Hoyt and Carolyn Stevens
“An endangered
society is one whose members can no longer change the stories they
tell themselves. The inability to script alternative narratives—to
change our stories—can be lethal.” Jerome Bruner, Acts of Meaning,
Cambridge, MA, Harvard University Press; 1990
"They deserve to die!" "How did he
get it?" "Tom has AIDS, he must be gay." The terms HIV/AIDS and
Hepatitis are now almost interchangeable with lifestyles being gay or
being a user of IV drugs; if you are positive for AIDS, you must be
gay; if you are positive for Hepatitis, you must have used IV drugs.
The stigmatizations of these diseases have resulted in the isolation
of, and the negative response, to being tested. Gregory M. Herek,
PhD, John P. Capitanio, PhD, and Keith F. Widaman, PhD. 1
recently conducted a long-term study that deals which the stigma
associated with HIV/AIDS.
In the study it was found that the
general public believes the following myths and beliefs about AIDS
transmission:
o
Most people with AIDS
are responsible for having their illness - 48.3%
o
People with AIDS should
legally be separated from others to protect the public health - 12%
o
Beliefs about HIV
transmission:
o
Being coughed on or
sneezed on by someone who has the AIDS virus - 50.4%
o
Use of public toilets -
40.8%
o
Sharing a drink out of
the same glass with someone who has the AIDS virus - 50.1%
These beliefs also confront those
individuals who are positive for Hepatitis, although to a lesser
degree. A recent study that was conducted in Colorado reveals
comparable results with the aforementioned study. The results from
this particular survey were not intended to answer questions
concerning the levels of awareness instead they were meant but to show
the lack of awareness of these diseases. This is the first survey
that addresses the discrepancies between known sources of transmission
as well as other sources that people perceive as vectors for
infection. In addition the study will deal with the concept of
acquiring either of these diseases as a matter of a personal lifestyle
choice.
The alarming increase in infectious
diseases over the last two decades makes it imperative that the public
become better informed about questions concerning:
o
How are these diseases
are contracted?
o
What are the risks?
o
How to avoid these
diseases?
Unfortunately, there is an
overabundance of inaccurate information, myths and erroneous beliefs
on which the public have based their judgments. Because of this,
society is extremely uninformed and uneducated in relation to
infectious diseases—HIV/AIDS and Hepatitis.
Another important issue that the
study on awareness was intended to accomplish was:
1) To discover when the
respondents had been exposed to the comprehension that diseases
(HIV/AIDS & Hepatitis), can be transmitted by other sources, and
2) Did the respondents'
attitudes change as whether these diseases were acquired by a
"Life-style Choice" or perhaps other means?
Many people believe that there are
just a few ways to acquire either of these diseases and that they
occur due to specific life-style behaviors. This is why, in
constructing the survey we attempted to reveal the possibility of
other sources in lieu of basic blood-to-blood or sexual preferences.
For example there is the possibility of acquiring either illness from:
surgery, hemodialysis, dental work, being employed in a medical
profession. Because HIV/AIDS is often associated with a specific
life-style behaviors, very little information has been released about
male-to-male sex, or IV drug use. Instead, questions have been more
focused on lesser known groups, which are positive for HIV/AIDS. Such
groups include: women, children, people who have acquired the illness
from surgery, and many unknown reasons.
Special Term that will be used
throughout the survey:
"Fault Finders" are
respondents who decide on "Yes" as acquiring Hepatitis as a
"Life-style choice" for the First Hepatitis Choice question and then
they continued to select "Yes" for the other three choice questions.
The term "Fault Finders" will be used throughout this paper to
describe these respondents. Objective
The purpose of this study is to
determine the level of awareness concerning the various sources of
infection. We wish to determine how aware students are of the various
methods of transmission such as it relates to people, who are
positive, as a result of a personal life-style choice or due to other
circumstances. Do they believe these diseases are a matter of
"Personal Lifestyle Choice"? One of the assumptions we
concluded was that there is a much misinformation and poor awareness
of the matter.
Because many individuals assume that
HIV/AIDS is a disease that only affects gay men, it was imperative to
include other possibilities so that the respondents could reflect on
other plausible groups also becoming infected with the virus. A group
of questions was put into in the AIDS section that relates to women
that are positive, children under the age of 13 that are positive,
individuals that are positive from medical necessity, and other people
that are positive from unknown sources with little or no suggestion of
their HIV/AIDS having been related to male-to-male sex or IV drug
use. We decided questions concerned all of these those groups since
many people are unaware of the fact that there are really numerous
causes for these infections.
After the above question another
grouping of questions required that the respondents were to write down
the percentage of people they believed were positive due to a
"Lifestyle Choice." Methods
A survey was conducted in Colorado
using 502 respondents. The survey was a pre-test/experiment/post-test
design. An experimental check-off list from several known sources of
transmission, to include many additional phony sources (considered to
be sources of infection by the general public), was used as the
experimental model. The list was chosen based on actual, as well as
perceived sources for, transmission of these diseases to assist in
determining what respondents consider being actual sources based upon
their current limited level of knowledge/awareness.
One of the primary objectives in this
study was to determine what perception that the respondents have about
people who have these diseases and how they believe that these
diseases can be contracted. We also wanted to observe if the use of
the experiment (a check-off list), as well as the percentage tables,
might change the respondent's concept of whether these diseases were a
matter of choice or had to do with other circumstances. The survey
was designed with two sections, the first relating to Hepatitis and
the second to HIV/AIDS. The "matter of personal lifestyle choice"
question was asked twice for each disease section, once at the
beginning of the list and then at the end the list. This was to
determine if there was a change in the answers after the respondents
had read through the source list.
The term - "personal lifestyle
choice" was used because it has been culturally associated with the
negative mind-set toward theses diseases. We felt that by using such
a prejudicial statement as a "personal lifestyle choice," that if
there would be a change in the responses, it would have come from a
change in the attitude of the respondent. Results
Demographics
Data Analysis for the Hepatitis
section The results of
the "choice" questions are as follows
Question-9: "Do you
believe that acquiring a disease such as Hepatitis is a matter of
personal lifestyle choice?" was the
first question that was asked prior to the Hepatitis check-off list.
Responses for the first hepatitis
choice question were: Yes-131 (26.2%), No-239 (47.8%), Uncertain-130
(26%), and Non-responses-2 (0.3%).
Question-15: "Do you
believe that acquiring a disease such as Hepatitis is a matter of
“personal lifestyle choice?" was the
last question asked after the Hepatitis check-off list. Responses for the
second hepatitis choice question were: Yes-115 (26.1%), No-207 (47%),
Uncertain-118 (26.8%), and Non-responses-62 (12.3%)
Question-10: "Have you
ever heard of:" was asked to determine if the respondents had any
knowledge of the disease Hepatitis.
Hepatitis A—413
(82.3%) Hepatitis B—437
(87.1%) Hepatitis C—373
(74.3%) Unknown type—106
(21.1%) No knowledge—34
(6.8
Question-11: "Do you know
anyone who has been infected with:" was asked to determine if
respondents personally knew of anyone who was positive.
Hepatitis A—63 (12.5%)
Hepatitis B—82 (16.3%)
Hepatitis C—98 (19.5%)
Unknown type—50 (10%)
Members of our team felt the number of
respondents who knew someone that was positive for Hepatitis C Virus – (19.5%) was
significant because many of those who are positive will not disclose
this information to many individuals, unless those who are positive have
very close ties with each other. Those individuals, who are positive
for Hepatitis and/or HIV/AIDS, generally do not disclose such
information openly with the general public.
The list of sources for the check-off
list concerning Hepatitis was based upon
a frequency table that CDC (Center for Disease Control) has available
for Hepatitis and the potential sources for infection. 8
One of the problems experienced by our
group, was the fact that many of the respondents would mark a box that
was, beyond doubt, an obvious non-choice answer (having a manicure,
surgery, or hemodialysis) yet still marked “Yes"—it is a personal
life-style choice for acquiring this illness. Table 1
Hepatitis
HIV/AIDS
Perceived
Sources for Infection:
Percentage
of
Respondents
Percentage of
Fault Finders
Percentage
of
Respondents
Percentage of
Fault Finders
Breathing contaminated air*
11.0
1.8
Personal contact
with an individual with Hepatitis A
32.3
9.0
Personal contact
with an individual with Hepatitis B
33.7
9.2
Personal contact
with an individual with Hepatitis C and other types
33.5
10.0
Personal contact
with an individual with Hepatitis (unknown type)
24.5
7.0
Body
piercings*
47.6
12.9
43
16.9
Blood transfusion
68.9
17.1
8.4
3
Child/employee in
daycare center
16.7
3.6
4
1.2
Dental work
34.7
10.0
36.9
10.6
Employment or
involvement (student or volunteer) in the field(s) of Medicine or
Dentistry
29.9
7.4
22.9
7.6
Food/water of
questionable quality (restaurant or other source)
31.7
7.6
3.4
1
Having a manicure
13.7
3.0
9.2
3.4
Hemodialysis
21.5
6.4
19.9
.4
International
travel
19.1
5.2
6.6
3
IV drug use1
64.7
15.9
62.5
20.9
Kissing*
23.9
7.6
10.2
4
Multiple partners
1
50.0
16.3
56.6
21.7
Sexual
preferences 1
48.2
14.1
58.6
19.1
Sharing another persons glass*
13.5
3.4
3.8
.4
Surgery; major,
minor or dental
41.8
11.4
40.2
12.9
Tattooing
54.2
15.5
47.8
17.5
19.9
5.6
7.8
2.2
Acupuncture*
28.5
10.8
Having personal
contact with an individual with HIV
22.7
7
Having personal
contact with an individual with AIDS
23.1
7.2
Open sores,
scratches or wounds exposed to bodily fluids in the work place
57.4
18.7
* Represents bogus response statements that we felt represented many of
the fabricated sources for infection
1
Represents, only for the HIV/AIDS section those sources that are
considered by CDC to be sources of the illness
Various statistical tests were used, mainly to crosscheck and to verify
the results of each of the tests. We found several main predictors
(statements that could be used to foretell the respondent's answers).
These values are:
o
Multiple partners - HBV
and Hepatitis C Virus
o
International Travel -
HBV and Hepatitis C Virus
o
Personal contact with a
person with Hepatitis A - Hepatitis C Virus
Question-22:
"Of those individuals
who are positive for any of these diseases, what percentage of the
total, which are positive do you believe, became positive by their own
lifestyle or personal actions/behavior?"
o
Hepatitis
B—average 36.72% (Fault Finders - 47.21%)
o
Hepatitis
C—average 39.91% (Fault Finders - 47.63%)
o
HIV—57.77%
(Fault Finders - 64.55%)
o
AIDS—58.69%
(Fault Finders - 66.54%)
Of the questions that dealt with
percentage values, the Fault Finders had a generally higher average than
the other members of the survey sample. The "Fault Finders" represent a
sizable block of individuals that were very closed-minded. They would
mark boxes that were not even associated with any form of a
behavior/life-style source e.g.: getting a manicure, employment in,
dental work, use of a public restroom or hemodialysis. These
individuals continued to believed that acquiring either illness was a
matter of a "Personal Lifestyle Choice."
Another interesting factor in reference
to question #22, was during the process of taking the survey, average
values for this question declined indicating the importance in educating
these people and then taking notice of how the respondents were then
less likely to choose "Yes" as a matter of choice. Once the
respondents' self-awareness of other potential sources of infection was
realized, many changed their minds about the acquisition of these
diseases being less of a "Personal Lifestyle Choice" issue.
Most average values changed during the
course of the survey, except for the "Fault Finders" who believe that
HIV/AIDS is a matter of a “Life-Style Choice.”
The "Fault Finders" on the final choice
question had a wider variation (standard deviation) in regards to the
percentage that became positive from a life-style choice verses those
who did not. This demonstrates a sense of uncertainty and, again, the
importance of education. The ambiguity for the "Fault Finders" via
their selection of "Yes" indicates, that by having learned the other
potential sources of these diseases, those sources of the highest risk
as well as the ones with lower probability of infection can, and does,
have an impact on the perception of these diseases.
Data Analysis for the HIV/AIDS section
Question-16: "Do you
believe that acquiring a disease such as HIV or AIDS is a matter of
personal lifestyle choice?" was the
question that was asked prior to the HIV/AIDS check off list.
Responses for the initial HIV/AIDS
choice question were: Yes - 241 (49.9%), No - 183 (37.9%), Uncertain -
59 (12.2%) and Non-response - 19 (3.8%)
Question-24: "Do you
believe that acquiring a disease such as HIV or AIDS is a matter of
personal lifestyle choice?" was the
question that was asked after the HIV/AIDS check off list. Responses for the
second HIV/AIDS choice question were: Yes - 223 (47.2%), No - 173
(36.7%), Uncertain - 76 (16.1%) and Non-response - 30 (5.97%)
Both check-off lists utilized the same
basic information for both Hepatitis and AIDS. The probability of
acquiring HIV/AIDS from body fluid is reduced due to the sensitivity of
HIV/AIDS virus to our environment. The virus is easily destroyed by
changes in the temperature, chemical contact (10% - bleach), and others,
which makes this disease a weaker virus than Hepatitis. So many of the
sources for transmission of Hepatitis are not the same as for HIV/AIDS;
the primary sources are direct blood-to-blood and blood-to-body fluids,
(we were unable to locate an existing table for HIV/AIDS). Information
from CDC indicates that the primary sources for HIV/AIDS are: sexual
preference, IV drug use and multiple partners. As such, many of those
sources that are needed for the transmission of Hepatitis are not the
same as they are for AIDS.
Because of this many of the sources
from our check-off list were reduced as having a lower level of
transmission probability which made these questions false sources of
infection.
From our study, we found that the
students believe that:
o
The percentage of females
who are positive — 40.9%
o
Percentage from medical
procedures who are positive —18.8%
o
Percentage from unknown
sources who are positive — 24.5%
o
Percentage of children
under the age of 13 who are positive — 14.6%
From the next question, we found that
the respondents felt that the percentages from a "Lifestyle Choice"
are:
o
HBV — 36.72%
o
Hepatitis C Virus — 36.41%
o
HIV — 57.77%
o
AIDS — 58.69%
The "Fault Finders"
values for this question ranged from 6.8% to 10.9% higher than the
average respondents for this question.
The main predictors for HIV
were:
o
A Public Restroom
o
Open sores or wounds
exposed to bodily fluids in the work place
o
Multiple partners
The main predictors for AIDS were:
o
A Public Restroom
o
Open sores or wounds
exposed to bodily fluids occurring in the work place
Taken from a long-term study that was
done by Herek, Capitanio, and Widaman 1. The results are:
o
"Kissing someone on the
cheek who has the AIDS virus" 1 — 13.3% in 1997
o
"Sharing a drink out of
the same glass with someone who has the AIDS virus" 1 —
50.1% in 1999
o
"Using public toilets"
1 — 40.8% in 1999
o
"Being coughed on or
sneezed on by someone who has the AIDS virus — 50.4% in 1999" 1
Conclusions:
Pretest – experiment - Posttest
sections of the survey format did show a change in how the respondents
answered the "Choice Questions" for Hepatitis: however, the result for
HIV/AIDS had a significant value using the "McNamar Test." The result
for Hepatitis was not as strong as for HIV/AIDS, however we felt that
the reason could be that fewer of the respondents were familiar with all
of the consequences and causes for Hepatitis. By the end of the survey,
respondents had changed their attitude/perception for HIV/AIDS at a
significant level. They were deemed less likely to consider HIV/AIDS as
a result of a "Lifestyle Choice" issue.
The study also exposes many of the
inconsistencies in perceptions of the acquisition of these two
illnesses. The section on HIV/AIDS indicates a higher level in
awareness as to the main sources for transmission of the diseases and
the ranking of the perceived sources of transmission. This is not shown
for the Hepatitis awareness level because of the broad range of ranking
levels and misconceptions of transmission of the disease. This
indicates a lack of understanding about the disease itself.
Because many of the inconsistencies
from the sources of transmission for both diseases, respondents selected
sources that are clearly not a matter of a "Lifestyle Choice" issue,
e.g. international travel, blood transfusion, surgery, etc. They would
still select "Yes" for the choice questions. There was no indication of
a strong association between many of the answers in the lists for
possible sources of infection. This shows that some underlying/unknown
variables for choosing a "Yes" answer.
The "Fault Finders" represent a strong
influence for all four "Choice Questions." The "Fault Finders"
represented 100% for the Hepatitis section of the survey while they
represent 58.7% of the total respondents who believe that acquiring the
disease HIV/AIDS is a matter of a "Personal Lifestyle Choice."
According to study conducted by Bruce
and Jo Phelan this is an indication of "Conceptualized Stigma” 2.
In order for stigma to occur they state that the following components
need to converge:
1)
"People distinguish and label human differences" 2
a)
"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" 2
b)
"An important part of any thorough study of the stigma associated
with different diseases" 2
2)
"Dominant cultural beliefs link labeled persons to undesirable
characteristics—to negative stereotypes" 2
a)
"Human differences are linked to undesirable attributes" 2
b)
"Associating human differences with negative attributes" 2
3)
"Dominant cultural beliefs link labeled persons are placed in
distinct categories so as to accomplish some degree of separation of
'us' from 'them'" 2
a)
"Us from Them attitude" 2
b)
"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. " 2
4)
"Labeled persons experience status loss and discrimination that
lead to unequal outcomes" 2
a)
"Status loss and discrimination" 2
b)
"When people are labeled, set apart and linked to undesirable
characteristics, a rationale is constructed for devaluing, rejecting,
and excluding them." 2
"Among the US public AIDS stigma has
been manifested as anger and other negative feelings towards PWAs
(People with AIDS), the belief that they deserve their illness,
avoidance and ostracism, and support for coercive public policies that
threaten their human rights. Stigmatizing attitudes are strongly
correlated with misunderstanding the mechanisms of HIV transmission and
overestimating the risks of casual contact, and with negative attitudes
toward social groups disproportionately affected by the epidemic,
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