Transcript document

Exaggerated contagiousness:
Delineating the boundaries in the everyday lives
of Chinese people with HIV/AIDS
Y. Rachel Zhou, Lecturer
School of Social Work & Institute on Globalization
McMaster University, Canada
XVI International AIDS Conference
Toronto, Canada, August 13-18
Acknowledgements

Chinese people living with HIV/AIDS
(PLWHAs) and Chinese AIDS
professionals who participated in this
study;

International Development Research
Centre (IDRC), Canada;

Faculty of Social Work, University of
Toronto
Outline



Context of this study;
Methods;
Findings;


How was the “contagiousness” of
HIV/AIDS understood and reacted to
through the daily encounters of Chinese
people living with HIV/AIDS (PLWHAs)?
Conclusions/discussion
Context of this exploratory study

As of the end of 2005, the estimated number of
people currently living with HIV/AIDS in China
was 650,000 (MOH, UNAIDS & WHO, 2006);


Only about 20% of this population have been detected
Widespread public fear and social discrimination:


General ignorance and misconceptions about this
disease have been identified as the two primary reasons;
Little is known about the processes by which such
prejudices spread and, perhaps, are made worse
through social and interpersonal interactions
Methods

A phenomenological approach;

To understand the lived experiences of Chinese
PLWHAs from their own perspectives


Semi-structured face to face in-depth
interviews;

Pilot study (2003): 10 frontline AIDS professionals as key

Formal study (2004): 21 adults PLWHAs
informants;


E.g., their lived experiences of interacting with others
Recruited in a metropolitan city in North China through
snow-ball sampling
Data analysis:

Coding by using NVivo
Research participants

10 frontline AIDS professionals

Two physicians, three
nurses, two AIDS NGO
workers, one public health
official & two researchers;

21 adult PLWHAs




Gender:
 five female and five male
Age:
 28 ~75 yrs (mean = 42.3
yrs)



The length of working with
PLWHAs:
 1~15 yrs (mean = 7.1 yrs)
Age：21~ 46 yrs (mean=36
yrs) ;
Gender: 15 men and six
women;
15 from cities and other six
from rural areas;
Length of HIV diagnosis:
 11 months (0.9 yr) ~ 115
months (9.6 yrs )
(mean=46.6 months)
Social constructions of HIV/AIDS

Pervasive misconceptions;



“Foreigners’ disease”, “bad people’s disease”, “lethal
disease”, and/or “extremely contagious disease”;
Infection mode: the “innocent” vs. the “culpable”
Multiple stigmas associated with HIV/AIDS:


Social discrimination among the public, health workers,
PLWHAs and their families;
“More horrible” than getting other infectious diseases
(e.g., hepatitis B) and incurable diseases (e.g., cancer)
Exaggerated “contagiousness”: At home

Separation of various aspects of the living arrangement
(e.g., sleeping, cooking and doing laundry);
“His mother is more nervous than my mother. Ah, she
always wears gloves, even when she just holds the
plates. …When filling our bowls with rice, she must do
this for us, and we are not allowed to touch them. She
always uses a paper to separate our bowls from her
hand when she holds them. The same with the sofa: we
must sit on this side, and we are not allowed to sit on
that side where they would sit.”

The family members who had close contact with
PLWHAs were also viewed as “contagious” by others
Exaggerated “contagiousness” (cont’)

In the workplace:


Physical avoidance and explicit discrimination
In health care institutions:


HIV/AIDS was viewed much more contagious than it is;
Some PLWHAs were rejected for surgery, dental care, etc.
“When doctors did B ultrasonic scanning for other
‘normal’ patients, they didn’t have any protection. But
when it was my turn, doctors would wear medical masks
and gloves. That winter, every patient was given a
winter coat, but patients with HIV/AIDS were not.”
PLWHAs’ self-perception and self-policing

Impacts on PLWHAs’ self-perception;



E.g., Feeling hurt, reduced self-esteem and sense of
normalcy, and depression
“I am a poisonous snake” & “virus carrier”
Voluntarily disciplined themselves to refrain from
“contaminating” others


Over-carefulness in daily lives;
Social withdrawal;


“Guard-line” between HIV-infected bodies and “healthy” bodies
Retreat from romantic relationship and sexual practices
Changing perceptions about “contagiousness”

Mastery of correct AIDS knowledge;


PLWHAs’ autonomy: E.g., a participant invited AIDS
volunteers to his home for dinner so as to show his
family that it is “safe” for “healthy” people to have
contact with him
Understanding, support and care from others
(e.g., family, friends, and health workers);


Feeling less nervous about their own “contagious”
bodies;
“[Health workers] are the experts in this regard:
if they can eat with you, this might mean that you
are not all that horrible.”
Conclusions/discussion



There are conflicts existing between people’s mastery
of AIDS knowledge and their fear of contact with
PLWHAs in practice;
Despite their AIDS knowledge, Chinese PLWHAs’
perceptions about their own “contagiousness” are
greatly influenced by their experiences of interacting
with others;
AIDS education should not be limited to the
dissemination of knowledge per se, and the interactive
or interpersonal dimensions of discrimination/antidiscrimination must also be taken into account