P L U S ositive iving nder tigma

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P L U S ositive iving nder tigma
HIV-Related Stigma in the Netherlands
HIV-Related Stigma in the Netherlands
Sarah E. Stutterheim
Arjan E. R. Bos
Herman P. Schaalma
Stutterheim – Bos – Schaalma
Po
sit
Li
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Un
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St
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ive
HIV-Related Stigma in the Netherlands
Sarah E. Stutterheim
Arjan E. R. Bos
Herman P. Schaalma
Colophon
© 2008 Aids Fonds and the authors
© Graphic design: Nora Oosting
This report presents the results of the PLUS Project. The PLUS project was sponsored by Abbott and AIDS
Fonds and conducted by the Maastricht Center for Research on HIV/AIDS Prevention and Education (RESHAPE),
Maastricht University and Erasmus University Rotterdam in cooperation with STI-AIDS Netherlands and the Dutch
HIV Association.
ISBN: 978-90-808752-5-8
Printed by: PrintPartners Ipskamp, Enschede
Table of Contents
Executive summary
7
1 INTRODUCTION
9
2 STUDY I
13
2.1 Methods
13
2.2 Results
18
2.2.1 Settings in which HIV-related stigma occurs
18
2.2.2 Manifestations of HIV-related stigma
19
2.2.3 HIV status disclosure
22
2.2.4 Consequences of perceived HIV-related stigma for psychological well being
24
2.3 Conclusion
25
3 STUDY II
27
3.1 Methods
27
3.2 Results
31
3.2.1 Perceptions of HIV and PLWHA
31
3.2.2 HIV status disclosure
40
3.2.3 Manifestations of HIV-related stigma
44
3.2.4 Consequences of HIV-related stigma
54
3.2.5 Coping with HIV-related stigma
58
3.3 Conclusion
64
4 RECOMMENDATIONS
67
Acknowledgements
73
References
75
APPENDICES
79
Appendix A: Fact sheet for Study I
79
Appendix B: Fact sheet for Study II
81
Appendix C: Fact sheet for recommendations
83
Executive summary
People living with HIV/AIDS (PLWHA) face not only the physical and psychological consequences of their infection;
they are also confronted with stigmatising reactions from others. For example, PLWHA may experience problems
in their relationships, have trouble attaining insurance or may even lose employment as a result of their HIV status
(Bos, Kok & Dijker, 2001; Crandall & Coleman, 1992; Herek, 1999). HIV-related stigma can negatively impact
social relationships, access to resources, social support provision and the psychological well being of PLWHA
(Bos, Schaalma & Pryor, 2008; Nyblade, Pande, Mathur, MacQuarrie & Kidd, 2003). In addition, HIV-related
stigma hampers effective HIV prevention activities (UNAIDS, 2008) and is a barrier to voluntary HIV counselling
and testing (Meiberg, Bos, Onya & Schaalma, 2008; Vermeer, Bos, Mbwambo, Kaaya & Schaalma, in press).
To date, little research has been conducted on the extent to which PLWHA in the Netherlands experience HIV-related
stigma. Furthermore, no research has been done on whether PLWHA with differing ethnic backgrounds experience
stigma differently. Consequently, the studies reported here were conducted. Study I was a quantitative survey study on
HIV-related stigma conducted with 667 PLWHA in the Netherlands. This study investigated the contexts in which HIVrelated stigma occurs, the manifestations of HIV-related stigma, and the extent to which perceived stigma is related to
actual disclosure, disclosure concerns, self esteem and psychological well being. As expected, this study represented
the views of mostly Dutch and Western European PLWHA. As a result, Study II was conducted. This study included
42 HIV positive participants from African, Antillean or Surinamese descent and 52 HIV negative participants from the
African, Antillean and Surinamese communities in the Netherlands and employed qualitative research methodology to
ensure coverage. In Study II, we sought to establish how these communities think about HIV and PLWHA in addition to
uncovering the experiences PLWHA from these communities have had with HIV-related stigma.
Study I established that perceived HIV-related stigma is a significant and very real problem in the daily lives of
PLWHA. The media, the gay community, going out or partying, the financial services sector, work and sexual
partner(s) are all important settings in which HIV-related stigma has been reported to occur. Important manifestations of HIV-related stigma experienced by PLWHA are blaming, increased physical distance, avoidance, excessive hygienic measures, indifference and exclusion from social activities.
Furthermore, Study I demonstrated that PLWHA often report being provided with contradictory advice about HIV
status disclosure. While some people say they should disclose, others say they should conceal their HIV status. This
may be a logical consequence of the fact that there is no single universal strategy for determining whether or not to
disclose. However, contradictory advice can nonetheless create confusion and insecurity in PLWHA thus exacerbating the dilemma surrounding whether to disclose or conceal. With respect to actual disclosure, most PLWHA in this
study reported having disclosed their HIV status to their partner, close family members and friends. Generally, these
PLWHA reported being more reluctant to talk openly about their HIV infection with colleagues and acquaintances.
Lastly, Study I demonstrated that perceived HIV-related stigma has a strong and significant impact on the self
esteem and psychological well being of PLWHA. In short, these results have shown that perceived HIV-related
stigma is indeed a severe problem that affects the daily lives of PLWHA.
Study II, which focused on the African, Antillean and Surinamese ethnic communities in the Netherlands demonstrated that the perceived contagiousness and perceived severity of HIV impact the likelihood of HIV-related
stigma, as does the degree to which one is considered personally responsible for one’s infection. Further, HIVrelated stigma is perpetuated by associations between HIV and norm-violating behaviours such as promiscuity and
homosexuality. These perceptions are exacerbated by taboos on talking about HIV, sexuality and homosexuality.
Study II also established that, because HIV is a concealable condition, many PLWHA are faced with the dilemma
of disclosure. Disclosure patterns vary extensively from one HIV positive person to another, but most employ a
number of arguments for and against disclosure when determining whether or not to disclose or conceal one’s
status. Disclosure is more likely when the person trusts the confidant, feels the need to share his or her secret
with someone or is seeking social or financial support. Additional reasons for disclosure include wanting to start
a new romantic relationship and wanting to warn others to curb their sexual risk taking. Disclosure is less likely
when the person fears stigmatisation, feels ashamed, has had poor experiences with disclosure in the past and
when the person with HIV has observed negative reactions to other PLWHA. An additional reason for non-disclosure is that the HIV positive person wants to spare others from worrying about him or her or from being subjected
to stigmatising reactions as a result of their association with PLWHA. One final reason is that the person with HIV
believes that his or her status is a private matter that does not need to be shared with others.
Further, a number of manifestations of stigma were established in Study II. These include avoidance, rejection,
abandonment, exclusion, increased physical distance, excessive protective measures, gossip, blaming, disdain,
negative remarks and denial. These occur in various settings including with family, with friends, in the health care
sector and with other PLWHA.
Study II also demonstrated that stigma can negatively impact the social relationships and psychological well
being of PLWHA. It can result in decreased social networks and can cause difficulties starting new relationships,
particularly romantic relationships. HIV-related stigma can also generate pain, sadness, loneliness, anger, and
frustration as well as the internalisation of stigma. Further, HIV-related stigma can impact health by making antiretroviral treatment adherence problematic.
Lastly, Study II revealed that PLWHA cope with HIV-related stigma in the different ways. In most cases, participants
did not attempt to change the social reality of stigmatisation but rather adapt to the circumstances they found
themselves in. Coping strategies employed included focusing on other things or people, attributing HIV-related
stigma to other’s ignorance, choosing not to base one’s personal identity on one’s illness and accepting that HIVrelated stigma is part and parcel to having HIV. Further, Study II showed that many PLWHA avoid stigmatising situations and people, and identify more with other PLWHA. They also seek support from their immediate surroundings.
Recommendations for HIV-related stigma reducing interventions are as follows: 1) create awareness of HIVrelated stigma; 2) actively work towards breaking taboos on talking about HIV, sexuality and homosexuality; 3)
increase knowledge of HIV that is geared to reducing perceptions that perpetuate HIV-related stigma; 4) encourage contact between PLWHA and others to create familiarity and reduce stigmatising reactions; 5) empower and
support PLWHA to promote openness about HIV; 6) focus on the specific contexts in which stigma occurs, such
as the media, the gay community, the financial services sector and places of employment; 7) ensure that interventions are theory and evidence-based and that communities are involved; 8) promoted collaborative action
across governments, organisations and professionals; and 9) continue to learn and improve efforts through communication and research.
1
introduction
People living with HIV/AIDS (PLWHA) face not only the physical and psychological consequences of their infection; they are also confronted with stigmatising reactions from others. For example, PLWHA may experience
problems in their relationships, have trouble attaining insurance or may even lose employment as a result of
their HIV status (Bos, Kok & Dijker, 2001; Crandall & Coleman, 1992; Herek, 1999). HIV-related stigma can
negatively impact social relationships, access to resources, social support provision and the psychological well
being of PLWHA (Bos, Schaalma & Pryor, 2008; Nyblade, Pande, Mathur, MacQuarrie & Kidd, 2003). In addition, HIV-related stigma hampers effective HIV prevention activities (UNAIDS, 2008) and is a barrier to voluntary HIV counselling and testing (Meiberg, Bos, Onya & Schaalma, 2008; Vermeer, Bos, Mbwambo, Kaaya &
Schaalma, in press).
The term stigma refers to an attribute or characteristic of a person that is deeply discrediting. This attribute is
devalued in a particular context and calls into question the full humanity of the person who possesses it. As a
consequence, people with a stigmatised condition are often considered spoiled or flawed in the eyes of others
(Bos, 2001; Crocker, Major & Steele, 1998; Jones et al, 1984). The origin of stigmatisation lies in the cognitive
representations of people who posses this apparently deviant or stigmatised condition. These cognitive representations may subsequently trigger emotional and behavioural reactions from others (Bos et al., 2008; Dijker
& Koomen, 2003). In short, stigmatisation is a complex process in which cognitive, emotional and behavioural
aspects all play a role.
Several studies have identified a number of factors that underlie the stigmatisation of PLWHA (Bos, Dijker, &
Koomen, 2007; Bos et al., 2001; Dijker & Koomen, 2003; Herek, 1999; Herek & Capitanio, 1998). First, while
HIV cannot be acquired through everyday social contact, people can perceive HIV to be highly contagious. When
perceived contagiousness is high, people tend to respond to PLWHA with fear and stigmatising reactions such
as social rejection. Second, stigmatisation is related to the perceived seriousness or severity of the stigmatised
chapter 1
Perceived contagiousness
+
+
Perceived seriousness
+
+
–
Personal responsibility
Pity
–
Stigmatisation of PLWHA
+
–
+
Norm-violating behaviour
Fear
Anger
+
Figure 1.1 Cognitive-emotional model of HIV-related stigma
Source: Bos, Schaalma & Pryor, 2008
condition. When HIV is considered to be a life-threatening condition that is associated with death, reactions to
PLWHA are often negative. Third, stigmatisation is related to perceptions regarding personal responsibility. When
PLWHA are considered personally responsible for acquiring their HIV infection through, for example, sexual risk
taking, people tend to respond with less pity and more anger. This can result in greater stigmatisation of PLWHA.
Lastly, HIV is frequently associated with behaviours that can be considered norm-violating. For example, when HIV
is associated with homosexuality, promiscuity and/or injection drug use (IDU), negative emotions and stigmatising
responses towards PLWHA are more likely. These factors are outlined in the cognitive-emotional model of HIVrelated stigma displayed in Figure 1. This model is based on work conducted by Dijker & Koomen (2003) and demonstrates how the above mentioned cognitions are related to emotional and behavioural reactions towards PLWHA.
Research on illness representations (Bishop, 1991a; Bishop, 1991b) has shown that lay people generally categorise and interpret medical conditions on two dimensions, namely the contagiousness and the seriousness of the
condition. As HIV is considered to be both contagious and serious, stigmatisation of PLWHA is more likely. This is
in contrast to, for example, cancer that is serious but not contagious or influenza that is contagious but not serious. People with cancer or the flu are thus less likely to be stigmatised than PLWHA.
Are PLWHA in the Netherlands indeed stigmatised? Ten years ago, Bos, Kok and Dijker (1998) conducted a
national telephone survey (n = 751) to assess public reactions to PLWHA. This study revealed that, in the
Netherlands, public reactions to PLWHA were moderately positive. Risk perceptions were quite realistic. Most
participants believed that HIV cannot be transmitted by shaking hands with PLWHA (91%), kissing an HIV positive person on the cheek (88%), sharing an office with an HIV positive person (87%), drinking out of the same
glass as a person with HIV/AIDS (77%) or being served in a restaurant by someone who has HIV/AIDS (74%).
In terms of the forms of stigmatisation, blaming was reported by only 11% of the participants and an almost
equally small group had a negative attitude about homosexuality (13%). A mere 5% reported a very strong fear of
PLWHA while 21% reported just a little fear. Further, 8% of participants indicated that they felt very strong anger
10
introduction
towards PLWHA while 22% reported just a little anger. Also, 41% reported having very strong feelings of pity while
47% reported just a little pity. Only 10% of the participants found it unacceptable to have personal contact with
PLWHA. Lastly, the participants in Bos and colleagues’ (1998) study reported feeling less compassion for PLWHA
than for people suffering from another serious or chronic condition, such as cancer, cardiovascular disease or
asthma.
Evidently, the results of Bos and colleagues’ (1998) study paint a relatively positive picture. Only a small percentage of participants demonstrated stigmatising attitudes or behaviours towards PLWHA. However, the study also
established that only one in every ten participants had ever had personal contact with an HIV positive person.
This suggests that the study measured intentions to react positively to PLWHA more so than actual reactions. This
is important as a vast body of research has shown that good intentions do not always translate into corresponding good actions (Fishbein & Ajzen, 1975). In essence, it is possible that the participants in Bos and colleagues’
study may stigmatise PLWHA, especially in initial encounters, despite acceptable knowledge levels and intentions
to react positively. Previous research by Pryor and colleagues (1999; 2004) may support this. Their studies have
demonstrated that people’s initial response to people with a stigmatised condition is often automatic and reflexive. This reaction is often one of fear. Conscious deliberation that can overrule the reflexive and negative initial
responses only occurs after approximately five seconds. In short, according to Pryor and colleagues many people
are likely to react to PLWHA first with fear and, only five seconds later, overrule this fear with rational thoughts
such as ‘HIV cannot be transmitted through casual contact.’ Furthermore, social interaction between stigmatised
individuals and others is often awkward. Those without HIV who come into contact with PLWHA may display their
discomfort non-verbally (Hebl, Tickle & Heatherton, 2000) which, in turn, can be experienced as stigmatisation
by PLWHA.
To date, little research has been conducted on the extent to which PLWHA in the Netherlands experience HIVrelated stigma. Furthermore, no research has been done on whether PLWHA with differing ethnic backgrounds
experience stigma differently. Consequently, the studies reported here were conducted. Study I was a quantitative survey study on HIV-related stigma conducted with 667 PLWHA in the Netherlands. This study investigated
the contexts in which HIV-related stigma occurs, the manifestations of HIV-related stigma, and the extent to
which perceived stigma is related to actual disclosure, disclosure concerns, self esteem and psychological well
being. As expected, this study represented the views of mostly Dutch and Western European PLWHA. As a result,
Study II was conducted. This study included 42 HIV positive participants from African, Antillean or Surinamese
descent and 52 HIV negative participants from the African, Antillean and Surinamese communities in the
Netherlands and employed qualitative methodology. In Study II, we sought to establish how these communities
think about HIV and PLWHA in addition to uncovering the experiences PLWHA from these communities have had
with HIV-related stigma.
In this report, we first discuss the results of the quantitative study and then the results of the qualitative study.
Lastly, recommendations for HIV-related stigma reducing interventions are outlined.
11
2
study I
In our first study, a cross sectional quantitative survey study, we focused on perceived HIV-related stigma among
PLWHA in the Netherlands.
2.1Methods
2.1.1 Participants
In total, 2,264 people were approached to participate in the survey study. Of the 1433 people approached
through a mailing from the Dutch HIV Association, 466 returned the survey (32.5%). Of the 823 people
approached through HIV nurses and other practitioners during medical consultations, 193 responded (23.5%).
Three additional participants had heard about the study through a third party and contacted the researchers
directly for a survey. For five others, data on how they were approached to participate was missing. In total, 669
people returned the survey (29.5%). Two were excluded from the analyses as they failed to meet the inclusion
criteria regarding age that restricted the analyses to those aged 17 to 75. Respondent characteristics are displayed in Table 2.1.
The majority of respondents were male (86.2%). Most respondents were also homosexual (79.5%). Noteworthy
differences between the homosexual and heterosexual participants are: 1) the gender distribution whereby the
homosexual group was almost exclusively men; 2) a lower mean age in the heterosexual group; 3) a greater
number of moderately educated participants in the heterosexual group and a greater number of highly educated
participants in the homosexual group; 4) more part-time employment in the heterosexual group and more full
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Table 2.1 Demographic and background characteristics of sample (n=667)
Variable
% All (n=667)
% Homosexual (n=513)
% Heterosexual (n=132)
Gender
Male
86.2
99.8
33.3
Female
13.8
0.2
66.7
Age
Years of age (mean, SD)
Range (min-max)
46.6 (9.6)
47.4 (9.1)
42.89 (10.4)
17-75
24-75
17-70
Level of Education*
Low
19.5
19.2
19.9
Moderate
31.0
28.5
42.0
High
49.5
52.3
38.1
Employment/Income
Full-time work
41.4
43.7
32.6
Part-time work
19.0
17.3
25.0
Receiving benefits
21.0
21.1
21.2
Studying
1.4
1.0
3.0
Volunteer work
Other
5.6
5.2
7.6
11.6
11.7
10.6
Marital Status
Married
25.1
24.6
28.0
Common law
23.3
24.8
18.2
Single
43.0
45.2
33.3
Divorced
5.7
3.1
15.2
Widowed
2.9
2.3
5.3
Sexual Orientation
Heterosexual
20.5
100.0
0.0
Homosexual
79.5
0.0
100.0
Ethnicity
Dutch
86.5
89.1
78.8
Other
13.5
10.9
21.2
Means of Transmission
Through sex
87.5
91.8
73.5
Other
12.5
8.2
26.5
Time Since Diagnosis
Less than 2 years
16.0
17.1
10.8
2 to 4 years
13.8
14.9
10.8
4 to 6 years
9.2
8.8
8.5
6 to 8 years
10.8
10.2
12.3
8 to 10 years
10.2
9.0
13.1
More than 10 years
40.0
40.0
44.5
14
study I
Table 2.1 Demographic and background characteristics of sample (n=667)
Variable
% All (n=667)
% Homosexual (n=513)
% Heterosexual (n=132)
Treatment
Combination therapy
79.3
80.1
78.8
No therapy
20.7
19.9
21.2
1.1
0.4
3.8
Current Health
Very poor
Poor
5.3
4.9
6.8
Reasonable
26.8
28.5
22.0
Good
31.5
30.8
34.0
Very good
19.1
18.8
16.7
Excellent
16.2
16.6
16.7
* Low = elementary or lower vocational training; moderate = secondary school or mid-level vocational training; high = college or university
time employment in the homosexual group; 5) more divorced participants in the heterosexual group and more
single participants in the homosexual group; 6) greater representation of PLWHA with a Dutch ethnicity in the
homosexual group; and 7) lower mean time since diagnosis among the heterosexual participants.
With respect to ethnicity, among the total group of respondents, 577 identified themselves as Dutch, 40 as
Western or Central European, 2 as Eastern European, 9 as North American, 12 as Southeast Asian, 1 as East
Asian, 3 as Australian (Oceania), 8 as Northern African or Middle Eastern, 10 as Sub-Saharan African, 20 as
Latin or South American (of which 6 were Surinamese) and 11 as Caribbean (all of which were Antillean/Aruban).
Please note that the ethnic backgrounds defined total to more than the total number of participants as participants were permitted to identify themselves with more than ethnicity. Clearly, non Dutch PLWHA were poorly represented.
2.1.2 Measures
The survey measured perceived stigma, the settings in which HIV-related stigma occurs, the manifestations of
stigma, actual disclosure, disclosure concerns, self esteem and psychological well being. The scales used to
measure these concepts are described in the sections below. The survey also contained questions on demographic characteristics such as gender, age, educational attainment, employment, marital status, sexual orientation and ethnic background as well as HIV-specific characteristics such as the means by which one acquired HIV,
the time since diagnosis and current health status. Unless otherwise specified, all scales that were originally in
English were translated to Dutch by a native Dutch speaker fluent in English and then back-translated by a native
English speaker who is fluent in Dutch. For scales originally developed in Dutch, the scales were translated by a
native English speaker fluent in Dutch and back-translated by a native Dutch speaker fluent in English. The complete survey is available on request.
Perceived stigma
Perceived stigma was measured using a scale developed by Wahl (1999), namely the Consumer’s Experience of
Stigma Questionnaire (CESQ). This scale was originally developed for use with psychiatric patients. In this study,
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chapter 2
we adjusted it for use with PLWHA. An adaptation of the Dutch translation (Vinken, Bos, Bolman & van der Plas,
2005) was used for Dutch speaking participants while the original CESQ was used for English speaking participants. The scale’s nine items focused on the degree to which participants had experienced negative reactions to
their HIV infection and answers were provided on a five point Likert scale ranging from 1 (never) to 5 (very often). A
higher score on this scale is indicative of greater perceived stigma. The Cronbach’s alpha for our adaptation to the
CESQ is .75. An example item is: “Have you been shunned or avoided when it was revealed that you have HIV?”
Settings in which HIV-related stigma occurs
The settings in which HIV-related stigma occurs were measured using a scale developed by the authors. In this
scale, participants were asked to indicate the degree to which they had experienced HIV-related stigma in 16
different settings, namely with immediate family, with extended family, with friends, with other PLWHA, with
sexual partner(s), at work, with one’s general practitioner, with one’s dentist, in hospitals, in the financial services sector, at school, in one’s faith community, in the gay community, with acquaintances from going out and
partying, during leisure activities and hobbies and, lastly, in the media. These settings were selected as they had
either been documented earlier in the social stigma literature or were identified as relevant by professionals or
organisations working with PLWHA. Each item was measured on a five point Likert scale ranging from 1 (never) to
5 (very often). In the event that the setting was not relevant or applicable for a participant, an answer option ‘not
applicable’ was included.
Manifestations of stigma
The manifestations of stigma experienced were measured using a scale developed by the authors. This scale contained 11 items, each of which represented a manifestation of stigma that has been documented in the social
stigma literature. These were increased physical distance, awkward social interaction, indifference, avoidance,
blaming, being overly nice and exaggeratedly kind, aggression, exclusion from activities, excessive hygienic measures, being told that one must disclose one’s status to others and being told that one must conceal one’s status.
For each item, participants were first asked if they had experienced this kind of stigmatisation. If the participant
answered affirmatively, he or she was then asked to indicate the settings (described above) in which he or she
had experienced that manifestation of stigma. Marking more than one setting was permitted. An example item is:
“Have you been excluded from certain activities because you have HIV? In which situations did this occur?”
Actual disclosure
Participants were also asked to indicate the people to whom they had disclosed their status. For their long term
partner, mother and father, participants answered with ‘yes’, ‘no’ or ‘not applicable’. With respect to disclosure to
immediate and extended family members (excluding mother and father), friends, acquaintances and colleagues,
answers were provided on a five point Likert scale ranging from 1 ([almost] no one) to 5 ([almost] everyone).
Higher scores are representative of greater disclosure.
Disclosure concerns
Disclosure concerns were measured using the disclosure concerns subscale of the HIV Stigma Scale that was
developed and validated by Berger, Ferrans and Lashley (2001). This subscale contains ten items that are scored
on a four point scale ranging from 1 (strongly agree) to 4 (strongly disagree) with an additional ‘not applicable’
option. A higher score represents greater disclosure concerns. The Cronbach’s alpha of this scale is .92. An
example item is: “I worry that people who know I have HIV will tell others.”
16
study I
Self esteem
Self esteem was measured using a validated version of the Rosenberg Self-Esteem Scale (RSE; Rosenberg,
1965). For English speaking participants, the original scale was used. For Dutch speaking participants, a translation by Zwanniken (1997) was employed. The RSE scale contains ten items that are scored on a four point scale
ranging from 1 (strongly disagree) to 4 (strongly agree). A higher score is indicative of greater self esteem. The
Cronbach’s alpha of this scale is .88. An example item is: “I am able to do things as well as most other people.”
Psychological well being
Psychological well being was measured using a validated version of the Mental Health Inventory (MHI). This scale
is frequently used to measure general psychological well being (Ritvo et al., 1997; Veit & Ware, 1983). It contains
four subscales that measure depression, anxiety, positive affect and behavioural control. The total scale comprises 18 items, all of which are answered on a six point scale ranging from 1 (none of the time) to 6 (all of the
time). A higher score is indicative of more psychological symptoms and thus poorer psychological well being. The
Cronbach’s alpha of the total scale is .94. An example of an item is: “Have you been anxious or worried?”
2.1.3 Procedure
All data were obtained using a voluntary survey for which participants provided informed consent. Following
approval from the Ethics Committee at Maastricht University’s Faculty of Psychology, surveys were distributed
to PLWHA by the Dutch HIV Association and by HIV nurses and practitioners working in the Netherlands. All
surveys were provided to participants together with letter in which the purpose of the study and procedure were
explained. Participants were also provided with a folder that contained additional information on the study and a
contact number in the event that participants had questions or concerns. A postage paid envelop that could be
used to return the completed survey was also included in the package. All participants were ensured that their
participation was anonymous and that their responses would be handled with the utmost care. No monetary
reward was provided for completing the survey.
The surveys distributed by the Dutch HIV Association (n=1433) were sent by mail to all members of the association on the 30th of May 2007. A follow-up reminder letter was sent approximately four weeks later. The surveys distributed by HIV nurses and practitioners (n=466) were handed out by HIV nurses to HIV patients during
consultations between the 1st of June and the 30th of September 2007 when distribution was deemed to be
appropriate by the consultant. In total, 21 of the 28 hospitals (75%) that treat HIV patients in the Netherlands
participated (total participating nurses and practitioners = 57). Locations of the participating hospitals were:
Alkmaar, Amsterdam, Arnhem, The Hague, Eindhoven, Haarlem, Leeuwarden, Maastricht, Nijmegen, Rotterdam,
Tilburg, Utrecht, Vlissingen and Zwolle.
Any PLWHA that had not received the survey but wanted to participate were able to pick up a survey at the Dutch
HIV Association or contact the researchers directly so that a copy could be sent by mail. The deadline for returning surveys was also the 30th of September.
2.1.4 Data analyses
Data were analysed using SPSS 15.0. Descriptive statistics and correlation matrices were first generated.
Regression analyses and ANOVAs were then conducted. All p-values < 0.01 (two tailed) were considered statistically significant.
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chapter 2
2.2 Results
The main results of Study I are discussed below. First, the settings in which stigma occur are described. Then the
manifestations of HIV-related stigma are outlined. Following that, HIV status disclosure is discussed. Lastly, the
psychological consequences of perceived HIV-related stigma are examined.
2.2.1 Settings in which HIV-related stigma occurs
Figure 2.1 displays the settings in which PLWHA reported experiencing stigmatisation. Clearly, a substantial
number of PLWHA reported experiencing stigmatisation in a variety of settings. The greater majority (79.1%) of
participants in our study reported experiencing stigmatisation from the media. Also, particularly for homosexual
participants, the gay community (66.7%) was an important context in which stigmatisation was reported to occur
(see Table 2.2). Further, acquaintances known from going out and partying (65.4%) were mentioned by approximately two thirds of the participants but most often by homosexual PLWHA (see Table 2.2). The financial services
sector (58.4%) and work (52.0%) were also important contexts in which HIV-related stigma was reported to
occur. Also, approximately half of the participants (51.0%) reported having experienced stigmatisation from their
sexual partner(s). Homosexual PLWHA reported relatively more stigmatisation from their sexual partner(s) (54.9%)
than heterosexual PLWHA (43.9%; see Table 2.2). PLWHA also mentioned the health care sector as a context in
which they have experienced HIV-related stigma. In fact, 28.8% reported experiencing stigma at the dentist’s
office, 26.2% claimed to have experienced stigmatisation in hospitals and 19.2% have felt stigmatised by their
general practitioner.
Percentage that have experienced stigma
90
80
70
60
50
40
30
20
10
Figure 2.1 Settings in which HIV-related stigma occurs
18
l
oo
sc
h
nt
ist
ge
h
ne
os
ra
pi
ta
lp
l
ra
ct
iti
on
er
de
HA
LW
un
he
rP
co
ith
fa
ot
m
m
te
ia
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im
m
Settings
ity
ily
m
fa
fa
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te
nd
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bb
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ily
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ie
(s
er
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tie
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rk
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or
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cia
ls
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ta
nc
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fro
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co
m
t/p
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m
un
ed
ity
ia
0
study I
Table 2.2 Settings in which HIV-related stigma occurs for all participants, and then by sexual orientation
Context
% All
n
n total
% Homo
n
n total
% Hetero
n
n total
Media
79.1
389
492
82.3
320
389
67.8
59
87
Gay community
66.7
290
435
70.2
283
403
16.7
3
18
65.4
261
399
69.7
237
340
46.7
21
45
Financial services sector
58.4
201
344
58.5
155
265
63.1
41
65
Work
52.0
193
371
51.2
153
299
58.3
35
60
Sexual partner(s)
51.9
295
568
54.9
242
441
43.9
47
107
Leisure activities/hobbies
40.9
175
428
42.5
144
339
37.8
28
74
Friends
39.3
238
605
39.0
184
472
39.6
44
111
Extended family
39.0
155
397
38.7
117
302
38.8
31
80
Immediate family
34.8
189
543
34.5
141
409
34.2
39
114
Faith community
33.6
46
137
38.3
36
94
28.1
9
32
Other PLWHA
32.1
179
557
33.0
145
440
27.3
27
99
Dentist
28.8
150
521
26.8
107
399
38.8
40
103
Hospital
26.2
170
649
24.3
121
498
31.3
40
128
General practitioner
19.2
124
646
17.7
88
496
22.8
29
127
School
16.7
30
180
17.8
24
135
17.6
6
34
Acquaintances from going
out/partying
n total = the number of participants that considered the setting relevant
2.2.2 Manifestations of HIV-related stigma
Figure 2.2 provides an overview of the manifestations of HIV-related stigma as experienced by the participants
in our study. Many participants reported having received advice on whether or not to disclose their HIV status to
others. More than half of the participants (54.1%) were advised to conceal their HIV status while 28.8% had been
encouraged to do the opposite, namely disclose their HIV status to others. Other important manifestations of HIVrelated stigma were blaming (38.2%), increased physical distance (34.4%), avoidance (30.9%), excessive hygienic
measures (29.5%), indifference (28.7%) and exclusion from social activities (27.3%). Also, one in every twelve
PLWHA (8.6%) reported suffering some form of aggression as a result of their HIV status. The manifestations of
HIV-related stigma reported were quite similar for both homosexual and heterosexual PLWHA (see Table 2.3).
For each manifestation, participants who had experienced that form of stigma also reported the settings in which
that particular form of stigma occurred. These are shown in Table 2.4. Please note that the total percentages can
exceed 100% as participants were permitted to mark more than one setting per manifestation.
Among those participants that reported experiencing increased physical distance from others (n=224), 32.1%
had experienced this in interactions with friends, 27.2% had experienced this in the health care sector, 25.0%
reported that this had happened at work and 24.6% reported that this had occurred in interactions with their
family. This kind of stigmatising reaction was less common in interactions with one’s partner(s) (16.5%) or in
interactions with acquaintances known from leisure activities (13.4%). Among those who had experienced awk-
19
60
50
40
30
20
10
n
ag
gr
es
sio
d
ly
ra
te
d
ag
ex
&
ar
d
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er
ly
ni
ce
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aw
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li
cia
so
n
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ex
kin
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nt
er
ac
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i
ac
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di
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to
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n
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tie
ce
re
n
di
se
lo
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ic
en
gi
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st
at
us
su
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ex
in
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ist
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ica
ys
co
nc
ce
g
am
in
nc
ea
bl
ls
ta
tu
s
0
to
l
Percentage that have experienced stigma
chapter 2
Manifestations
Figure 2.2 Manifestations of Stigma
Table 2.3 Manifestations of HIV-related stigma for all participants and then according to sexual orientation
Manifestation
% All
N
n total
% Homo
n
n total
% Hetero
n
n total
Told to conceal status
54.1
353
653
54.5
273
501
55.8
72
129
Blaming
38.2
250
655
38.4
193
503
37.2
48
129
Increased physical distance
34.4
224
652
32.8
164
500
40.3
52
129
Avoidance
30.9
201
651
30.2
152
503
35.2
44
125
Excessive hygienic measures
29.5
191
648
27.5
137
498
37.0
47
127
Told to disclose status
28.8
188
652
27.6
138
500
34.1
44
129
Indifference
28.7
186
648
26.8
133
497
35.9
46
128
Exclusion from activities
27.3
178
653
26.2
132
503
31.5
40
127
Awkward social interaction
19.8
128
648
19.1
95
498
21.3
27
127
Overly nice/exaggeratedly kind
19.4
127
655
18.9
95
503
21.7
28
129
8.6
56
653
8.0
40
501
9.3
12
129
Aggression
20
study I
Table 2.4 Manifestations of HIV-related stigma according to specific settings
% Health
Manifestation
% Leisure
% Work
Care Sector
% Family
% Friends
% Partner(s)
Told to conceal status (n=353)
36.5
27.2
43.1
40.5
20.7
9.6
Blaming (n=250)
20.0
22.0
43.2
40.8
16.4
14.8
Increased physical distance (n=224)
25.0
27.2
24.6
32.1
16.5
13.4
Avoidance (n=201)
22.4
13.9
23.9
43.3
7.5
19.4
9.9
75.9
11.0
10.5
5.2
3.7
Told to disclose status (n=188)
21.3
34.6
20.2
42.6
11.7
5.3
Indifference (n=186)
29.0
16.1
34.9
43.5
7.5
13.4
Exclusion from activities (n=178)
25.8
15.2
14.0
14.6
7.9
20.8
Awkward social interaction (n=128)
35.2
23.4
32.0
39.1
10.2
18.8
Overly nice/exaggeratedly kind (n=127)
34.6
22.8
42.5
51.2
15.0
10.2
Aggression (n=56)
17.9
12.5
26.8
17.9
21.4
12.5
Excessive hygienic measures (n=191)
Activities
ward social interaction as a result of their HIV infection (n=128), friends was the most frequently reported setting (39.1%), followed by work (35.2%) and family (32.0%). Less frequent settings were the health care sector
(23.4%), with acquaintances from leisure activities (18.8%) and with one’s partner(s) (10.5%). Indifference as
a manifestation of stigma (n=186) was most frequently reported to occur with friends (43.5%), then family
(34.9%) and work (29.0%). This was less common in the health care sector (16.1%), during leisure activities
(13.4%) and least common in interactions with partner(s) (7.5%). The most common setting in which participants
reported avoidance (n=201) occurring was by far with friends (43.3%), followed by family (23.9%), work (22.4%)
and during leisure activities (19.4%). Avoidance in the health care sector and by partner(s) was not frequently
reported (13.9% and 7.5%, respectively).
Further, among those respondents that reported being blamed for their HIV infection by others (n=250), the most
frequently reported contexts were family (43.2%) and friends (40.8%). Blaming by professionals in the health care
sector, colleagues, one’s partner(s) and acquaintances known from leisure activities was much less frequently
reported (22.0%, 20.0%, 16.4% and 14.8%, respectively). Overly nice and exaggeratedly kind reactions from people
(n=127) were most frequently reported to occur with friends (51.2%), family (42.5%) and at work (34.6%). This was
much less frequently reported to occur in the health care sector (22.8%), with one’s partner(s) (15.0%) and with
acquaintances known from leisure activities (10.2%). Aggressive reactions (n=56) most commonly came from
family members (26.8%), then from their partner(s) (21.4%) followed by friends (17.9%) and colleagues (17.9%).
The health care sector and leisure activities were less common settings for this manifestation of stigma (both
12.5%). Exclusion from activities (n=178) was most common at work (25.8%) and during leisure activities (20.8%).
The percentage of participants that had experienced exclusion in the health care sector, with friends and with family
was lower (15.2%, 14.6% and 14.0%, respectively). Exclusion was least commonly experienced in interactions with
partner(s) (7.9%). Excessive hygienic measures (n=191) were by far most commonly reported to have occurred in
the health care sector. In fact, of those participants that had been subjected to these kinds of measures, 75.9%
had experienced this in a health care setting. For the remaining settings, the percentages were all under 11%.
21
chapter 2
The most frequently reported setting in which participants were told that they must disclose their HIV status
(n=188) was with friends (42.6%) followed by the health care sector (34.6%). Of those who had been told they
must disclose their status, 21.3% had been told this by their work and 20.2% had been told this by family.
Partner(s) and acquaintances known from leisure activities were less common settings (11.7% and 5.3%, respectively). Of those participants that had been told that they must conceal their status, 43.1% had been told this by
family members, 40.5% had been told this by friends and 36.5% had been told this by colleagues or employers
at their place of employment. Further, 27.2% had been told to conceal by professionals in the health care sector
and 20.7% had been told by their partner(s). This was less common in leisure activities settings (9.6%). It is interesting to note that the advice provided with respect to disclosure and concealment was often contradictory. This
was especially the case with friends. It appears that some friends encourage PLWHA to disclose while others do
not. This is not surprising as each individual situation is unique and advice on disclosure or concealment is often
provided with good intentions. Nonetheless, contradictory advice on disclosure may create confusion and insecurity in PLWHA. The issue of disclosure is discussed in greater detail in the following sections.
It also interesting to note that, for most manifestations, the setting friends was the most common setting
reported. Exceptions were blaming and being told one must conceal one’s status. For both of these manifestations, the family was the most common setting. The other exception was excessive hygienic measures. Here, the
health care sector was by far the most frequently reported setting.
2.2.3 HIV status disclosure
Table 2.5 and 2.6 display the disclosure patterns of the participants. Table 2.5 indicates that 97.9% of the
PLWHA in our study had disclosed their status to their long term partner. With respect to parents, 68.2%
reported having disclosed to their mother and 64.7% reported having disclosed to their father. Table 2.6 shows
that a substantial majority of participants had been open about their HIV infection to most or all family members
(65.0%). Similar results were found for friends (64.1%). With respect to acquaintances and colleagues, most
PLWHA were less open. Only 31.1% reported having disclosed their status to most or all acquaintances. For colleagues, this percentage was 28.8%. Table 2.7 shows the scores of participants on the individual items included
in the disclosure concerns scale, and clearly demonstrates that many PLWHA are quite concerned about HIV
status disclosure.
Analyses were conducted to determine if those who were more open about their HIV status perceived less HIVrelated stigma than those who are inclined to conceal their HIV status. As demonstrated in Figure 2.3, this was
indeed the case. PLWHA who had disclosed their HIV status to most family, friends, acquaintances and colleagues scored significantly lower on perceived stigma than those who had not (p<.001). This raises the following
question: Does greater disclosure lead to more positive experiences and thus less perceived stigma or do poor
experiences with HIV status disclosure lead to more concealment of HIV status? Unfortunately, due to the crosssectional nature of this study, no conclusions regarding the causality of this relationship can be drawn. Therefore,
it remains unclear if people who have experienced stigma become more reluctant to disclose or that reluctance
to disclose increases perceptions of stigma.
22
study I
Table 2.5 HIV status disclosure
% Yes
% No
Long term partner
97.9
2.1
Mother
68.2
31.8
Father
64.7
35.3
Table 2.6 HIV status disclosure
% (Almost) no
one knows
% About half know
% Very few know
and half do not
% (Almost)
% Many know
everyone knows
Family members (excluding
23.4
5.9
5.6
11.0
54.0
Friends
mother and father)
13.4
13.5
9.0
22.1
42.0
Acquaintances
35.3
18.5
15.2
16.8
14.3
Colleagues
48.0
16.7
6.5
11.4
17.4
Table 2.7 Disclosure concerns
% Strongly
disagree
% Disagree
% Agree
% Strongly agree
17.7
25.8
27.3
29.2
7.5
25.6
40.7
26.2
15.3
33.3
26.8
24.6
27.0
40.7
20.4
11.9
6.5
14.9
35.7
42.9
12.3
36.6
32.8
18.3
23.0
32.5
30.6
13.9
11.7
31.1
36.2
21.1
9.3
31.1
31.6
28.0
15.8
23.6
32.4
28.2
In many areas of my life, no one knows that I have HIV.
Telling someone I have HIV is risky.
I work hard to keep my HIV a secret.
It is easier to avoid new friendships than worry
about telling someone that I have HIV.
I am very careful about who I tell that I have HIV.
Since learning that I have HIV, I worry about
people discriminating against me.
I never feel the need to hide the fact that I have
HIV. (recode item)
I worry that people may judge me when they
learn I have HIV.
I worry that people who know I have HIV will tell
others.
I have told people close to me to keep the fact
that I have HIV a secret.
23
chapter 2
Mean scores on perceived stigma
3.5
3
2.5
2
Open
1.5
Not open
1
0.5
0
Family
Friends
Colleagues
Acquaintances
Persons to whom one has disclosed
Figure 2.3 Perceived stigma and actual disclosure
2.2.4 Consequences of perceived HIV-related stigma for psychological well being
In this final paragraph, the consequences of perceived stigma for the self esteem and psychological well being
of PLWHA are examined. Table 2.8 displays the means, standard deviations and intercorrelations of perceived
stigma, disclosure concerns, self esteem and psychological well being. The results indicate that those who
reported greater perceived stigma also reported lower self esteem (r = -.27), lower psychological well being (r
= -.42) and greater disclosure concerns (r = .52). With respect to the subscales of the Mental Health Inventory
(MHI), perceived stigma was found to be positively correlated with depression (r = .41) and anxiety (r = .40), and
negatively correlated with positive affect (r = -.33) and behavioural control (r = -.38). Interestingly, disclosure
concerns were also found to be negatively related to the psychological well being of the PLWHA in this study.
Those who were concerned about the disclosure of their HIV status also reported lower self-esteem (r = -.16)
and lower psychological well being (r = -.24). In short, the present study clearly demonstrates that perceived
stigma is associated with disclosure concerns as well as the self esteem and psychological well being of PLWHA.
Table 2.8 HIV-related stigma, disclosure concerns and psychological well being
Variable
M
SD
1
2
-
.52**
-.27**
-.42**
-
-.16**
-.24**
1. Perceived stigma
2.48
.62
2. Disclosure concerns
2.68
.73
3. Self esteem
3.09
.50
4. Psychological well being
2.73
.88
Correlations are pairwise
24
3
-
4
.73**
-
study I
2.3 Conclusion
Previous research on HIV-related stigma in the Netherlands examined cognitive, emotional and behavioural reactions to PLWHA (Bos et al., 1998; Bos et al., 2001) and painted a relatively positive picture with respect to the
stigmatisation of PLWHA in the Netherlands. In contrast, this study which focused on the experiences of PLWHA
themselves rather than on the perceptions of those who do not have HIV paints a much bleaker picture. In fact,
it has established that perceived HIV-related stigma is a significant and very real problem in the daily lives of
PLWHA.
The participants in this study reported that the gay community, going out or partying, the financial services
sector, work and sexual partner(s) are all settings in which they have perceived HIV-related stigma. Further, the
media was a very prominent setting in our study. In fact, it was the most frequently reported setting in which
stigma occurs. This finding may, in part, be the result of specific circumstances at the time of the study. Just
prior to the distribution of the survey, a number of PLWHA in Groningen, the Netherlands were accused of intentionally infecting people with HIV. Potentially, this media experience impacted participants’ responses on questions regarding stigmatising reactions from the media. Nonetheless, it is a setting in need of attention.
Important manifestations of perceived HIV-related stigma found in this study include blaming, increased physical
distance, avoidance, excessive hygienic measures, indifference and exclusion from social activities.
Further, the study has shown that PLWHA often report being provided with contradictory advice about HIV status
disclosure. While some people say they should disclose, others say they should conceal their HIV status. This
may be a logical consequence of the fact that there is no single universal strategy for determining whether or not
to disclose. However, contradictory advice can nonetheless create confusion and insecurity in PLWHA thus exacerbating the dilemma surrounding whether to disclose or conceal.
With respect to actual disclosure, most PLWHA in this study reported having disclosed their HIV status to their
partner, close family members and friends. Generally, these PLWHA reported being more reluctant to talk openly
about their HIV infection with colleagues and acquaintances.
Lastly, our findings have demonstrated that perceived HIV-related stigma has a strong and significant impact on
the self esteem and psychological well being of PLWHA. In short, these results have shown that perceived HIVrelated stigma is indeed a severe problem that affects the daily lives of PLWHA.
25
3
study II
In order to explore the context in which HIV-related stigma occurs in the African, Antillean and Surinamese communities living in the Netherlands, a qualitative study was undertaken. In-depth, face-to-face, semi-structured
interviews were conducted with two different sets of participants. The first set comprised African, Antillean and
Surinamese PLWHA living in the Netherlands (hereafter referred to as the HIV positive group) while the second
set contained African, Antillean and Surinamese people living in the Netherlands who are HIV negative or
unaware of their HIV status (hereafter referred to as the HIV negative group).
3.1 Methods
3.1.1 Participants
In this study, 16 African, 9 Antillean and 16 Surinamese PLWHA were recruited for participation. One additional
participant identified himself as both Antillean and Surinamese. This was not considered problematic as this participant could provide insight on HIV-related stigma in both communities, and elaborate on their similarities and
differences. In total, 42 HIV positive participants were interviewed. Sample characteristics for this group can be
found in Table 3.1.
Further, 16 African, 19 Antillean and 17 Surinamese community members without HIV or who were unaware of
their status were recruited, generating a total of 52 HIV negative participants. Sample characteristics for this
group can be found in Table 3.2.
27
chapter 3
Table 3.1 Demographic and background characteristics of HIV+ sample (n=42)
Variable
% AFR+ (n=16)
% ANT+ (n=10)
% SUR+ (n=17)
Gender
Male
43.7
70.0
47.1
Female
56.3
30.0
52.9
35.6 (8.5)
43.8 (10.2)
37.8 (11.8)
Age
Years of age (mean, SD)
Range (min-max)
18-51
27-62
22-70
Level of Education*
Low
18.8
30.0
23.5
Moderate
50.0
30.0
53.0
High
31.2
40.0
23.5
Employment/Income
Full-time work
18.8
33.4
25.0
Part-time work
12.5
22.2
0.0
Receiving benefits
43.8
22.2
58.4
Studying
6.2
0.0
8.3
Volunteer work
Combination
6.2
0.0
0.0
12.5
22.2
8.3
0.0
13.3
Marital Status
Married
20.0
Common law
13.3
0.0
13.3
Single
53.4
90.0
53.3
Divorced
0.0
0.0
13.3
Widowed
13.3
10.0
6.8
Sexual Orientation
Heterosexual
80.0
40.0
68.8
Homosexual
20.0
60.0
31.2
Means of Transmission
Through sex
81.3
100.0
93.8
Through blood transfusion
12.5
0.0
6.2
Other
6.2
0.0
0.0
Time Since Diagnosis
Less than 2 years
20.0
0.0
13.3
2 to 4 years
20.0
20.0
13.3
4 to 6 years
20.0
30.0
20.0
6 to 8 years
0.0
0.0
33.4
8 to 10 years
20.0
30.0
0.0
More than 10 years
20.0
20.0
20.0
Treatment
Combination therapy
60.0
85.7
100.0
No therapy
40.0
14.3
0.0
28
study II
Table 3.1 Demographic and background characteristics of HIV+ sample (n=42)
Variable
% AFR+ (n=16)
% ANT+ (n=10)
% SUR+ (n=17)
Current Health
Very poor
Poor
Reasonable
Good
Very good
33.3
14.3
0.0
Excellent
13.3
28.6
11.1
6.7
0.0
11.1
13.3
0.0
0.0
6.7
14.3
33.3
26.7
42.8
44.5
Percentage of those participants with valid data; in most cases missing data did not exceed 10%; on some sensitive topics such as
means of transmission, treatment and current health, missing data exceeded 10%.
* Low = elementary or lower vocational training; moderate = secondary school or mid-level vocational training; high = college or university
Table 3.2 Demographic and background characteristics of HIV- sample (n=52)
Variable
% AFR– (n=16)
% ANT– (n=19)
% SUR– (n=17)
Gender
Male
43.8
57.9
47.1
Female
56.2
42.1
52.9
35.19 (13.8)
37.42 (14.3)
31.56 (13.7)
Age
Years of age (mean, SD)
Range (min-max)
19-64
19-70
18-64
Level of Education
Low
6.3
15.8
33.3
Moderate
56.2
31.6
60.0
High
37.5
52.6
6.7
Employment/Income
Full-time work
12.5
57.9
42.9
Part-time work
31.3
10.5
35.7
Receiving benefits
31.3
5.3
14.3
Studying
12.5
10.5
7.1
Volunteer work
6.2
0.0
0.0
Combination
6.2
15.8
0.0
13.3
42.1
6.3
Marital Status
Married
Common law
Single
0.0
10.5
25.0
73.3
47.4
68.8
Divorced
6.7
0.0
0.0
Widowed
6.7
0.0
0.0
Percentage of those participants with valid data; in most cases, missing data did not exceed 10%.
29
chapter 3
Participants were eligible for participation if they identified themselves as an African, Antillean or Surinamese
person living in the Netherlands and were at least 17 years of age.
In recruiting participants, we endeavoured to interview a relatively equal number of men and women per group.
In most groups, this was not a problem. However, we had great difficulties recruiting female Antillean PLWHA.
As a result, in this group, men are overrepresented. With respect to participants’ education level, it is important
to note that, in the HIV positive group, highly educated Antillean PLWHA were overrepresented. In the HIV negative group, Africans with a low level of education were underrepresented, as were Surinamese people with a high
level of education. Further, highly educated HIV negative Antilleans were overrepresented. Noteworthy differences
between groups with respect to age were: a) the absence of older participants in the AFR+ group; b) the slightly
older mean age in the ANT+ group; and b) the somewhat younger mean age in the SUR- group. In terms of the
sexual orientation of HIV positive participants, it is important to note that homosexual men were overrepresented
in ANT+ group.
3.1.2 Procedure
Participants were not selected at random. Rather, they were recruited through snowball sampling. In essence,
participant selection relied predominately on the network of the interviewers employed for this study. In fact, all
respondents in both the HIV negative group (n=52) and most of the respondents in HIV positive group (n=29)
were recruited directly by an interviewer and interviewed between July 2007 and May 2008. Recruitment folders were also distributed by HIV nurses and practitioners working in Dutch hospitals and by the Humanitas
Foundation, a non-profit organization operating in the Netherlands. Unfortunately, this did not result in any additional interviews. Further, a study announcement indicating that African, Antillean and Surinamese PLWHA were
sought to participate in an interview was placed on the Dutch HIV Association’s website. This generated one additional participant. Additional data from interviews with Surinamese and Antillean PLWHA were extrapolated from
earlier research conducted by Marijn de Bruin and Jeannine Nellen in early 2005 (n=12).
Prior to the interview, participants were provided with information regarding the purpose of the study and the
procedure. Informed consent for all participants was obtained. The interviewers received training prior to conducting the interviews and followed a structured protocol of open-ended questions with follow up probes during
the interview. Participants were provided with a monetary reward (E 30) for their participation. All interviews were
recorded with a digital voice recorder and transcribed verbatim.
Approval for this study was provided by the Ethics Committee at Maastricht University’s Faculty of Psychology.
3.1.3 Interview topics
In the interviews with African, Antillean and Surinamese PLWHA, the focus was placed on one’s experience with
stigmatising reactions, the impact of those reactions on the PLWHA and on how one copes with such reactions.
Further, experiences with disclosure were discussed. Additionally, the participants were given the opportunity to
provide suggestions for interventions and comment on some predetermined stigma-reducing activities.
In the interviews with members of the above mentioned communities who are either HIV negative or unaware of
their status, the focus was placed on attitudes and beliefs regarding HIV and PLWHA. Participants were asked
to convey their own beliefs and their perception of their community’s beliefs and attitudes. Further, participants
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Table 3.3 Interview topics by group
HIV+
HIV–
Experiences with stigma
Personal attitudes and beliefs about HIV and PLWHA
Consequences of stigma
Attitudes and beliefs about HIV and PLWHA in the community
Coping with stigma
Contagiousness and severity of HIV
Disclosure
HIV knowledge
Stigma-reducing activities
Stigma-reducing activities
were asked to gauge the severity of having HIV and convey the means by which they think HIV can be transmitted
and prevented. Similar to the interviews with African, Antillean and Surinamese PLWHA, participants were also
given the opportunity to provide suggestions for interventions and comment on the predetermined stigmareducing activities.
The interview topics are summarised in Table 3.3. The complete interview protocols are available on request.
3.1.4 Data processing and analyses
Data were processed and analysed using QSR NVivo 2.0. Each transcript was read thoroughly while listening
to the corresponding recording to identify emerging themes and establish categories or ‘nodes’ to which text
fragments were assigned. As coding occurred, a ‘tree structure’ was generated in which categories and subcategories were linked to one another. Following the within-case analyses of the individual transcripts, across-case
analyses for each group were conducted to identify the overarching themes relevant to that group. The six groups
were then compared to identify similarities and differences between the groups.
3.2 Results
3.2.1 Perceptions of HIV and PLWHA
PLWHA are more likely to be stigmatised when others perceive HIV to be a highly infectious and severe disease
(Bos, 2001; Dijker, Koomen & Kok; 1997; Dijker & Koomen, 2003; Dijker & Koomen, 2007). Stigmatisation is
also more likely when others believe that PLWHA are personally responsible for their HIV infection or when HIV
is associated with behaviours that violate norms (Dijker & Koomen, 2003; Weiner, Perry & Magnusson, 1988).
These and other associations were found in both our HIV positive and HIV negative samples and are described in
detail in the following sections. They are also summarised in Table 3.4 on page 39.
Perceived contagiousness
HIV negative participants from all three ethnic groups reported that many people in their community believe that
HIV is easily acquired and can be transmitted through casual contact such as touching, shaking hands, sharing
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eating and drinking utensils and, in some cases, simply being in the same space as PLWHA. One participant said,
“People think that if you spend time with someone who has HIV, you will get it too. Like if you touch that person,
you’ll automatically be infected.” (EM2, HIV negative Surinamese woman). Another stated, “Unfortunately there
are still people who believe that you can get contaminated by sharing eating utensils and drinking utensils and
clothes and things like that.” (IS6, HIV negative African woman). Yet another reported the following:
People won’t even shake his [HIV positive person’s] hand and, if that person celebrates his birthday, he won’t even get a
kiss because they think that they will get it. You need to make sure that that person doesn’t sneeze around you, or cough,
because before you know it, you’ll have it too … They don’t even dare to give him a kiss because they think you can get
this infectious disease through saliva. You don’t hug that person because if your sweat comes in contact with his, you’ll
get it. (RB7, HIV negative Antillean man)
The association between contagiousness and HIV was also exemplified by the way in which PLWHA were
described. Some participants, and particularly Antillean and Surinamese participants, reported that PLWHA are,
by some, viewed as ‘dirty’. In fact, the word ‘dirty’ arose on various occasions when HIV negative Antillean and
Surinamese participants were asked to convey their perceptions of how their community thinks about HIV and
PLWHA: “I think if someone has something you don’t want to get, you can almost call it dirty. No one will want to
be around that person.” (INDS3, HIV negative Antillean woman). Further illustrations of this are:
Interviewer: How are people with HIV viewed by your community? Do you have any experience with that?
Participant: I don’t have experience with that but you hear stories of course. Actually, they are talked about very negatively.
Interviewer: What do you mean by negatively?
Participant: Hmm, how should I say it? That they are dirty or something, that people that have HIV are dirty.
(EM2, HIV negative Surinamese woman)
A boy at my school has HIV and, in the first few weeks, no one knew that he had HIV. At some point in time, they knew and
they all avoided him. And then I went and talked to them about it and it was like, ‘He should just not touch me. I think it is
dirty. You never know, I might get it too.’ [I said] ‘How can you get it too? How do you know that you can get it?’ [He said]
‘I just think it is dirty. He shouldn’t touch me.’ (GA3, HIV negative Surinamese woman)
The high level of perceived contagiousness among community members posited by many HIV negative African,
Antillean and Surinamese participants was confirmed by the HIV positive participants in our samples. One HIV
positive Surinamese woman described this as follows: “They think if they touch you, they’ll automatically get HIV,
or if they talk to you. That’s what they think. Or even eating from the same plate – they think they can get it from
that.”(UM2, HIV positive Surinamese woman). Another HIV positive participant said, “People are more afraid to
have any kind of contact with you even though it is commonly known the people cannot get HIV through just
hugging or drinking from the same glass.” (IS14, HIV positive African man). Yet another HIV positive participant
exemplified this high level of perceived contagiousness when she said, “That’s how people view you: like you have
leprosy!” (UM1, HIV positive Antillean woman).
Many participants, both HIV negative and HIV positive, attributed this high level of perceived contagiousness in
their community and consequent fear of having casual contact with PLWHA to ignorance among those who do
not have HIV.
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People are not aware of the virus and how you can get infected. People think that if they come in contact with that person,
shake a hand, they will get it but that’s not it. It’s just that people don’t know enough about the disease. People think that
if they touch someone with HIV, they will become infected, but that isn’t true. I think it’s ignorance. (DT2, HIV negative
Antillean woman)
Interestingly, a lack of knowledge regarding the ways in which HIV is transmitted and prevented was not highly
present in our HIV negative sample. Admittedly, some participants did display some incorrect knowledge and,
occasionally, a participant indicated being unsure about whether or not HIV can be transmitted by saliva, but, on
the whole, the HIV negative participants from all three ethnic groups were very well informed on the means by
which HIV can be acquired.
This may suggest that the African, Antillean and Surinamese HIV negative participants in our study were not representative of their communities with respect to their knowledge levels. However, it seems rather unlikely that
three different ethnic samples with differing education levels were all incidentally better informed than their fellow
community members. It seems more likely that participants presumed that action is a logical consequence of
knowledge and when action (e.g. avoidance of PLWHA) and knowledge (e.g. HIV cannot be transmitted through
casual contact) were seen to be discordant, knowledge was presumed to be lacking. This is illustrated by the following statement: “Fear is the result of ignorance – just the absence of information because if you have the information then you know what it is and then you know that you don’t have to be so scared of it.” (UM5, HIV negative
Surinamese man).
The fact that participants in all three ethnic communities sought an explanation for behaviour that did not
follow from knowledge while knowledge was relatively high suggests that, in all three ethnic communities, a
gap between HIV-knowledge and behaviour towards PLWHA exists. This is not surprising. It is well-recognised
that behaviour is determined and influenced by more factors than simply knowledge (Fishbein & Aijzen, 1975;
Bandura, 1986).
Further, this disparity between knowledge and action was also observed in comments made by the participants
themselves. Despite high levels of HIV-knowledge, many participants indicated that they would be ‘careful’ when
in the presence of PLWHA ‘just in case’.
If I know that someone is infected with HIV, then I think that I would be a little more distant with that person. And that is
just automatic because we know that the disease is only transmitted through blood and fluids. So, I think I would be a
little more cautious. Somehow, there is fear in your body, I think. In my opinion, you would kind of put the handbrake on.
(GA2, HIV negative Surinamese man)
One participant described this phenomenon as follows: “The view or the attitude is I would say distant. Distance
… It’s distant and say some kind of fear, not to the extent of discriminating but more or less being careful.”
(EWN2, HIV negative African man).
What we have thus observed is that there is a very present fear of contagiousness among Africans, Antilleans and
Surinamese people despite adequate levels of HIV-knowledge and that there is also a tendency to be ‘careful’.
This fear has also been confirmed by the PLWHA in our study. Interestingly, few HIV negative participants reported
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having actually stigmatised PLWHA or intending to stigmatise them as a result of fear of contracting HIV. This may
suggest some degree of social desirability in the interviews. Alternatively, it may provide support for dual-process models of reacting to stigmatised individuals as have been posited by Pryor and colleagues (1999; 2004).
Dual process models contend that responses to stigmatised individuals are twofold. First, there is an “automatic
(immediate or impulsive) reaction” of fear followed by a “controlled (thoughtful or deliberative) reaction” that is
based on knowledge (Pryor et al., 2004, p. 436). In short, in social contact with PLWHA, HIV negative people are
likely to first react based on fear (of contagion) and then, when HIV-knowledge is up to par and one is motivated
to not stigmatise PLWHA, an adapted and more deliberative action follows whereby one’s behaviour better coincides with one’s knowledge. Our data appears to support this contention.
Clearly, perceived contagiousness is a dimension and determinant of stigma found to be present in all three HIV
negative ethnic group samples in this study. Some slight differences between the groups were noted. Among the
Antillean and Surinamese samples, the fear was predominantly related to acquiring HIV through physical contact,
while in our African sample, the fear also pertained to the air. One participant stated, “Some people are just
scared of even sitting close to me like you are sitting right now, because they have no idea. They think it could
come from the air and infect you.” (CR3, HIV positive African man). Another said, “People don’t want to come
near you. They don’t know it is not contagious. They think it’s like tuberculosis. They think it’s in the air but it is
not in the air.” (RB4, HIV negative African man). Perhaps this fear of acquiring HIV through the air is related to the
fact that HIV and tuberculosis co-infection is relatively common in Africa (Corbett et al., 2003).
Perceived severity
The perceived severity of a medical condition has been found in earlier studies to be related to stigmatisation
(Bos et al., 1999; Dijker & Raeijmaekers, 1999; Dijker & Koomen, 2003). In our study, a high level perceived
severity was found to be present. In fact, among the HIV negative participants in all three ethnic group samples,
HIV was seen as a very severe disease. When asked what kind of ideas or feelings come to mind when the word
‘HIV’ is said, many participants mentioned something to the extent of “it is a death sentence.” (RB9, HIV negative
Antillean man). The association between HIV and death was thus very apparent.
When I hear the word HIV, death comes to my mind and sick people and suffering and things … I feel scared about it and I
feel it is a bad disease and it makes me scared about it. I am scared about it. And when you talk about it, I think of death.
(PAM5, HIV negative African woman)
You know that you can’t get rid of it and that you’ll die. You’ll have it for the rest of your life and you will need to take medicine to slow it so that it doesn’t go really fast but you know that the end is in sight … However you look at it, the end is
in sight … So, your future’s in the gutter, so to speak … It’s not a fever where you just take a couple of pills and, in three
days, you’re better. You have to change your whole life, your lifestyle. You have to take medicine day and night to make it
just a little easier otherwise you’ll just rot away. It is horrible. (EM1, HIV negative Surinamese man)
Evidently, the lifelong obligation to take medication was also seen as a factor that contributes to the severity of
the condition by the above participant and others. For example, one HIV negative Antillean woman said that one
of the reasons why HIV is such a severe condition is because, “you will be on a whole lot of medication for years.
You live only to take those pills.” (RB6, HIV negative Antillean woman).
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HIV positive participants also indicated that they too had associated HIV with death prior to and shortly after
their diagnosis, as did their families and friends. One participant said that, when he was told that he had HIV,
he thought he had “come to the end of the road.” (CR3, HIV positive African man). Another said, “I thought, ‘I’m
going to go home, clean my whole house and prepare myself for death.’” (SS2, HIV positive Antillean woman).
Yet another participant spoke of how her family looked at her as if she was “time bomb” that was going to “drop
dead” anytime (IS2, HIV positive African woman). Fortunately, many PLWHA conveyed that they themselves and
most of the people close to them have since come to realise that HIV is not a death sentence and that it is possible to live a relatively long and healthy life with HIV.
However, among those who are not close to a person with HIV, the idea that HIV is a fatal disease appears to
persist, despite the acknowledgement of antiretroviral medication by approximately half of the HIV negative participants. This is exemplified by the fact that many HIV negative participants in our study were unable to distinguish between HIV from AIDS. The terms were often used interchangeably. Alternatively, participants contended
that their fellow community members fail to distinguish the two: “For them, HIV is AIDS and AIDS is HIV.” (RB2,
HIV negative Antillean man). This was further confirmed by HIV positive participants: “They say AIDS and not HIV
even.” (IS9, HIV positive African man).
Another perception that reinforces the notion that HIV is a very serious disease is that PLWHA are ‘skinny’.
Participants from all three ethnic groups indicated that if someone loses weight and becomes thin, people
assume that that person has HIV: “Even my own junior brother, he used to have one of my friends and then tell
me, ‘That man is so pale, so slender, I suspect he has HIV.’” (IS13, HIV positive African woman). Another HIV
positive participant exemplified this notion that weight and HIV-status are somehow linked when she told the
interviewer about how her mother in Suriname was concerned about her being ill and was comforted and put at
ease over the telephone by the following words: “Mama, if you could see me, you’d see that I am 100 kilograms.”
(MB21, HIV positive Surinamese woman).
Clearly, this idea that HIV is a condition that can be ‘seen’ on a person is present among Africans, Antilleans and
Surinamese people. This is clearly linked to perceptions regarding the course and severity of the condition. In
essence, this notion exemplifies beliefs that PLWHA are so ill that they wither away and die: “It just eats you all
through and at the end of the day it just leaves you an empty frame – nothing else.” (EWN1, HIV negative African
man).
The degree to which HIV was perceived as a very severe condition did not appear to vary much between the
ethnic groups interviewed. In all ethnic group samples, the majority of participants contended that HIV is a very
serious and severe disease. What was observed was that, in general, the HIV negative participants tended to
sketch a much bleaker and severe picture of life as a person with HIV than PLWHA themselves.
Personal responsibility
Another factor that is thought to contribute to the stigmatisation of PLWHA is the degree to which a person
with HIV is considered to be personally responsible for his or her HIV-infection (Dijker & Koomen, 2003; Weiner,
Perry & Magnuson, 1988). Numerous HIV negative participants indicated that PLWHA are often thought to have
acquired HIV through irresponsible, preventable action such as unsafe sex. The idea is thus that PLWHA have
“brought it on themselves.” (CR4, HIV negative African man). One Antillean participant contended that, “Getting
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HIV is not an accident that just happens to you. It’s not like ‘oh poor you, you got HIV.’ No, it is simply your own
responsibility.” (SS1, HIV negative Antillean woman). Another Surinamese participant claimed, “Surinamese
people tend to think: it’s your own fault. And in essence, that’s true.” (GA2, HIV negative Surinamese man).
A few HIV positive participants even admitted that they indeed felt responsible for their HIV infection and see or
have seen their infection as punishment for their behaviour: “I first thought that this was punishment – punishment from God, you know. I deserved it because of, you know, the lifestyle I had.” (MB7, HIV positive Surinamese
man).
In fact, especially among Surinamese and African participants, HIV is often seen as punishment from ancestors
or God for poor or immoral behaviour.
The way that people look at them [PLWHA] is like you are really immoral. That is why you get the disease … The first thing
that comes to people’s mind is that you must have been immoral and that is why you have it. (PAM1, HIV negative African
woman)
You often hear: ‘It’s a curse. You were bad.’ People think that it has something to do with the spiritual world and those
kinds of things … Winti things and then they say, ‘Your ancestors are angry with you and have cursed you.’ (EM7, HIV
negative Surinamese man)
Further, our data supported the posited invert relationship between perceived personal responsibility and compassion or pity for PLWHA (Bos, 2001; Dijker & Koomen, 2003). The PLWHA in our sample reported being
granted less compassion or pity than other people who are ill.
There are just some things that are linked to this disease. I mean, if someone gets cancer, then he gets compassion. If
someone gets HIV, he doesn’t get that easily. It’s more a fear reaction and then, ‘oh shit, you’re going to die.’ … I think
that only haemophilia patients that have gotten HIV through a blood transfusion get the same kind of compassion or
understanding. (JW5, HIV positive Antillean man)
Another participant confirmed this notion with the following question: “Why is that if someone loses a leg, people
understand but if someone has HIV, they don’t?” (MB6, HIV positive Surinamese woman).
With respect to differences between the three ethnic groups, we found that the role of personal responsibility as
a contributing factor to stigmatising reactions to PLWHA was less present but surely not absent in the Antillean
samples than in the Surinamese and African samples. Nonetheless, we contend that perceptions of the degree
to which a person with HIV can be held personally responsible for his or her HIV infection substantially impact the
degree to which PLWHA are stigmatised by their communities.
Norm violation
Since the beginning of the HIV epidemic, HIV has been associated with certain behaviours deemed to be socially
unacceptable by mainstream culture. Most commonly, HIV infection is associated with promiscuity, homosexuality and drug use.
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Promiscuity
With respect to promiscuity, many participants, both HIV negative and HIV positive, reported that most people in
their community associate HIV with being ‘loose’ or ‘easy’.
People who carry the disease, to us, they are ‘loose’ – people who just do whatever and go to bed with whoever and aren’t
careful about things, like using a condom or something. They just dive into bed with anyone and that is looked down upon.
(DT2, HIV negative Antillean woman)
Participants also reported that when HIV is associated with promiscuity, it most often pertains to women.
Women “tend to be blamed to be the promiscuous one; it falls more on the women.” (PAM4, HIV negative African
woman). The following excerpt from an interview with an HIV negative Antillean woman illustrates this well.
Participant: If a girl has lots of boyfriends and those kinds of things, then she automatically has AIDS.
Interviewer: Only because –
Participants: Yes, only because she is sexually active. They don’t consider that maybe she just likes it [sex] and she does it
safely. No, she is automatically a whore and she automatically has AIDS.
Interviewer: Is that the same for boys?
Participant: No, for boys, that’s cool and manly.
(RB1, HIV negative Antillean woman)
In some cases, participants referred to prostitution as a specific form of promiscuity. This association was particularly apparent among African participants: “Sometimes they think, ‘Oh, she was a prostitute’ … They will
treat [her] like she is a hooker.” (EWN1, HIV negative African woman). This association was also confirmed by the
female African PLWHA in this study: “People think when you are HIV positive – they label you as prostitute.” (IS2,
HIV positive African woman). This perception may at least in part be rooted in the fact that the early HIV epidemic
in Africa was most prominent among commercial sex workers (McKeganey, 1994) and that early HIV prevention
campaigns focused on avoiding prostitutes (Grundfest Schoepf, 1995).
When the association between promiscuity and HIV was mentioned in reference to men, usually infidelity was
mentioned at the same time. In fact, among the Antillean participants, comments on infidelity pertained exclusively to men and, interestingly, were made exclusively by women.
Logically, when participants spoke of the association between HIV and promiscuity, they also often mentioned
an attribution of blame: “There are still people who believe that they asked for it, because they had many men or
many women, because they are loose.” (IS6, HIV negative African woman). One participant described how people
think about PLWHA as follows:
[People say] ‘He’s been – she’s been sleeping around. You see? This is what you get!’ It is not like it can happen by mistake. They are like, ‘You looked for it.’ … She has brought this disease to herself. She was promiscuous herself. She is the
one who brought the disease. (PAM4, HIV negative African woman)
Not surprisingly, the HIV positive participants in our study were keenly aware of the associations made between
HIV and promiscuity, prostitution and infidelity, as were they aware that the above are also related to attributions
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of personal responsibility for one’s infection. This was exemplified by the fact that some participants explicitly
defended their fidelity and emphasised that they did not acquire HIV through unsafe sex with numerous partners.
Interviewer: And what do they [Surinamese people] think the cause [of HIV] is?
Participant: That you slept with a whole lot of men, that you were loose. But that is not true because I didn’t go around
screwing everyone and anyone.
Interviewer: No.
Participant: You understand? Because they say, ‘She screwed around here and there. That’s why she has AIDS.’
(MB21, HIV positive Surinamese woman)
They see you as a whore. And because you are a whore, you got the disease. And because of that, they don’t want anything to do with you because you are a whore. ‘You sleep with whoever whenever.’ That’s how they think but it’s not true.
It’s not true but they think that because they are still kind of backwards. (UM1, HIV positive Antillean woman)
In general, the association between HIV and promiscuity appeared to be most common among African participants, followed by Antillean and then Surinamese participants.
Homosexuality
In Western cultures, HIV is commonly associated with homosexuality (Pryor, Reeder & McManus, 1991; Bos et
al., 1999). The association between HIV and homosexuality was also found in our study. It was found to be very
present and very explicit in the Antillean and Surinamese samples, but not in the African samples. When asked
what kinds of ideas came to mind when one thinks of HIV, many HIV negative Surinamese and Antillean participants made some reference to homosexuality: “I think of gays that have the virus. Most people in my culture say
that it is the gays that have it.” (EM9, HIV negative Surinamese woman). Another participant said, “Usually, gays
get it. That’s kind of the idea – that only gays have HIV.” (INDS1, HIV negative Antillean woman). This perception
was confirmed by the PLWHA in our study. One HIV positive participant said, “Either way, people think it is a gay
disease.” (JW5, HIV positive Antillean man).
Once again, the role of personal responsibility was observed but this time in relation to acquiring HIV through
homosexual contact.
They say, well, that is more a gay thing – man and man – and that is not allowed and that is not good. You have some
families that accept it but not many. From the time you are a kid, you know it is not good. Many Surinamese people think
that it [homosexuality] is not from God and that is why you get the disease. (MB10, HIV positive Surinamese man)
In fact, one HIV negative participant claimed that HIV is a ‘gay disease’ because homosexual men are more
inclined to have sex without a condom: “Gays – usually they don’t do it [sex] in a safe way.” (DT2, HIV negative
Antillean woman).
Drug use
HIV is also often associated with injection drug use (Reidpath & Chan, 2005). However, in our data, drug use was
rarely mentioned as something that is associated with HIV. This is not surprising given that, in participants’ home
countries and ethnic communities in the Netherlands, injection drug use is not a particularly common means of
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Table 3.4 Perceptions of HIV and PLWHA
HIV is highly contagious.
PLWHA are dirty.
HIV is a very severe disease.
PLWHA must be skinny.
PLWHA are personally responsible for their infection.
HIV is something you get if you are promiscuous.
HIV is something you get if you are gay.
HIV transmission. In fact, in the Netherlands, most HIV patients who acquired their infection through injection
drug use originate from the Netherlands or Western Europe (82.3%). In contrast, of those patients who acquired
HIV through heterosexual contact, 35% originate from Sub-Saharan Africa, 10.3% from Latin America and 5.3%
from the Caribbean (HIV Monitoring Foundation, 2007). Clearly, the role of drug use in the transmission of HIV is
less evident in these populations than in Western European populations. Consequently, drug use is not likely to
be associated with HIV by African, Antillean and Surinamese people living in the Netherlands.
The role of taboo
It has become evident that HIV is perceived by many members of the African, Antillean and Surinamese communities in the Netherlands as a highly contagious and very severe disease. Additionally, it is has become apparent
that HIV is often associated with norm-violating or deviant behaviour and that PLWHA are frequently considered
personally responsible for their own HIV infection. In all three ethnic group samples, participants claimed that
these perceptions, which are often incorrect, are maintained by taboos. One HIV positive participant stated,
“People often think that you can get HIV just by touching. They think that because they don’t ever talk about it
[HIV].” (JW2, HIV positive Antillean man). Another participant confirmed this, as is illustrated in the excerpt below.
When I think about it [stigmatising reactions from others], I still feel angry. But then again, I feel for those people because
I now know that they are doing no better. They did what they thought was protecting themselves. It was lack of information
and education about it because it is not talked about. And being a taboo, less information is given out. (IS2, HIV positive
African woman)
The participants in our study also claimed that the taboo on HIV is exacerbated by a taboo on talking about all
things related to sex and sexuality.
You know what it is? The way in which you get infected is sexual. Of course you can get it through injection needles but
they [the Antillean community] assume that it is always from sex and, among Antilleans, talking about sex is a taboo. And
so you have this disease that you get through sex and the taboo only gets bigger. (RB6, HIV negative Antillean woman)
When you think about HIV - in fact I am talking about it right now because you are asking me those questions but it is a
very silent disease. We actually don’t even use the word HIV. It is coming more and more to light because of the fact that
when you have this disease where we have given it various names because of the stigma surrounding the disease and the
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fact that it is not discussed. It is such a taboo to talk about HIV/AIDS and that is because it is a sexually transmitted disease. (PAM4, HIV negative African woman)
Further, participants claimed that a related taboo also contributes to making HIV a topic that cannot be openly
discussed. This is a taboo on talking about homosexuality.
I was thinking, ‘Why is it [HIV] so stigmatised?’ It has to do with the whole homosexuality thing that on its own is a stigma and a
taboo. In some cultures, it’s starting to come out a bit but it is not how it should be … So it [stigma] is the result of that. So you
are gay and you are also HIV positive – you definitely can’t talk about that. (RB3, HIV positive Antillean and Surinamese man)
Clearly, in all three ethnic group samples, participants contended that the myths and incorrect perceptions held
by their communities are upheld by taboos on talking about HIV, sexuality and homosexuality. On a positive note,
most participants did claim that the taboo in their ethnic communities in the Netherlands was less than the
taboo in their home countries. Nonetheless, taboos were considered to stimulate perceptions that promote the
stigmatisation of PLWHA.
3.2.2 HIV status disclosure
Because HIV is a concealable condition, PLWHA are in a position to choose to either disclose or conceal their
HIV status. This is, for many PLWHA, a difficult choice as disclosure can lead to different outcomes for different
people. For some, disclosure leads to social rejection and thus negatively impacts the psychological well being
of PLWHA (Major and O’Brien, 2005; Major, 2006). For others, disclosure can lead to an increased provision of
social support which usually positively impacts one’s psychological well being. If the latter is the case, then it can
be argued that concealment of one’s status can hamper social support provision and, in turn, negatively impact
one’s psychological well being (Ellemers & Baretto, 2006; Pachankis, 2007). Clearly, having a concealable condition that is commonly stigmatised poses a dilemma. PLWHA often ask themselves, ‘Do I take the risk and tell or
am I better off keeping my HIV status to myself?’
In the interviews with PLWHA, participants frequently volunteered information regarding to whom they have disclosed their status and when. In analysing the data, it became very obvious that most of the HIV positive participants in all three ethnic groups varied from one another with respect to the people to whom they had told that
they are HIV positive. Some had told family, others had not. Some had told close friends, others had not. In most
cases, acquaintances and employers were not informed, nor were schools or members of one’s religious community that were not close friends. Also, in most cases, one’s partner at the time of diagnosis was informed but
when it came to partners with whom the person with HIV started a relationship sometime after the diagnosis,
some were told and some were not. Clearly, the participants in our study varied substantially from one another
in their patterns of disclosure. Nonetheless, we observed that most HIV positive participants were highly selective when it came to disclosing their status. For example, one participant said, “I don’t tell my little secret to very
many people.” (RB3, HIV positive Antillean and Surinamese man). Another said, “I don’t go around telling people
everybody in a shop or restaurant or whatever that I’m HIV positive.” (CR3, HIV positive African man).
When it comes to choosing who to tell and who not to tell, we observed that the HIV positive participants in our
study employed a broad range of arguments for and against disclosure. These are outlined in detail in the two
sections that follow below and are also summarised in Table 3.5 on page 44.
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Reasons for disclosure
Numerous reasons for choosing to disclose one’s status to others were reported. The most commonly cited
reason for disclosure was that the one trusted the participant: “I tell them – the ones that I trust. You can’t say it
to anybody but you have some people sometimes you trust.” (IS9, HIV positive African man). Another commonly
reported reason was that the one needed to vent and get it out. A number of participants reported no longer
wanting to keep ‘the secret’ to themselves.
Participant: I am starting to tell certain people. I don’t keep it a secret anymore.
Interviewer: How did that change come about? Why did you choose to no longer keep it a secret?
Participant: When I kept it to myself, I didn’t feel good.
Interviewer: What do you mean?
Participant: I didn’t feel good because I was keeping this secret and it just makes you depressed.
(JW4, HIV positive Antillean man)
Similarly, some participants said they told others so that they would able to receive social or financial support
from those people. One participant stated, “I felt that they needed to know because it is a difficult thing. I don’t
know how to say it … I just thought they needed to know so that they know what I am dealing with.” (EM3, HIV
positive Surinamese woman). Another participant reported having told some members of her family in order to
ensure support for her children.
What if something happens to me now? Who would look after my kids? Then you start thinking of your relatives and say,
‘I think this person could really take care of my kids,’ and then, in that way, you really confide in them and then you tell
them. (IS5, HIV positive African woman)
An additional, and very relevant, reason for disclosing one’s status was the desire to start a new relationship with
someone. Participants often reported feeling compelled to share their status with new sexual partners but not
knowing how that partner would react.
I have a new boyfriend. We have talked and I am working on telling him. He wants a relationship with me and wants us to
be honest. He’s told me a few things about himself and I should tell him but I don’t know how he is going to react. (UM4,
HIV positive African woman)
The final noteworthy justification for HIV status disclosure observed is somewhat altruistic. A number of HIV positive participants reported that they would be willing to be open about their HIV status if it would contribute to
decreasing others’ sexual risk taking. One young Surinamese woman with HIV said, “I know that she [a friend] is
kind of easy with the boys and stuff so I told her [that I have HIV] because it is not something you expect. You
don’t think you can get HIV.” (MB6, HIV positive Surinamese woman). Another participant said, “If I know that you
will do something with the information, I’ll tell you.” (SS2, HIV positive Antillean woman).
Evidently, numerous valid arguments in favour of HIV status disclosure were provided by the HIV positive participants in our study. What is interesting to note is that these same participants provided even more arguments in
favour of concealing their HIV status, thus exemplifying the disclosure dilemma. Arguments against HIV status
disclosure are described in the following section.
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Reasons for non-disclosure
The most commonly cited reason for concealing one’s HIV status was a fear of being stigmatised if one discloses. In fact, quite a few participants indicated that, in the past, they had personally experienced stigmatisation following the disclosure of their HIV status and did not want to experience these kinds of reactions again.
One participant stated, “I have had a couple of bad experiences and I don’t want that again.” (MB29, HIV positive Surinamese woman). Another said, “I did not want to go down that road again.” (IS2, HIV positive African
woman). Also, a number of homosexual participants referred back to poor experiences with coming out about
their sexual orientation and stated that they expected similar reactions if they disclose their HIV status.
Participant: I have seen how people reacted to my homosexuality and I thought, ‘Wow!’
Interviewer: Was it very negative?
Participants: From some colleagues, it was, but it wasn’t directed straight at me. I just heard how they talked about it after
the fact. One guy told another and that guy told another. I just think, ‘Wow, if they talk about gays that way, what would
they say about HIV?’ So I just decided I’d rather not have that. (EM7, HIV positive Surinamese man)
Additionally, a number of HIV positive participants indicated that they would rather keep their status concealed
after seeing how other PLWHA were stigmatised after disclosure. One participant stated, “Now they don’t know
about me but I have heard how they talk about other people who have HIV, like ‘Have you seen him…’. I’d rather
not go through that.” (MB35, HIV positive Antillean man).
In fact, the PLWHA in our study were keenly aware of the potentially stigmatising reactions they may experience
if they choose to disclose. Some participants mentioned thinking that others will reject, avoid or abandon them:
“If I come and tell you, you’ll just throw me out. I keep quiet.” (IS8, HIV positive African woman). The following
excerpt also illustrates this:
Participant: I don’t dare talk about my HIV.
Interviewer: And the reason is?
Participant: Because I am scared.
Interviewer: Scared of what?
Participant: [I’m scared] to be rejected.
(JW3, HIV positive Antillean man)
Another form of stigmatisation feared was gossip. Numerous participants indicated that, if they disclose, they will
become the subject of gossip and would rather not have that happen as is exemplified in the excerpt above about
negative experiences with coming out about one’s homosexuality. Another participant reinforced this fear when
she said the following:
You can’t trust people! Definitely don’t tell other people ‘cause if she tells another – one person, ‘Don’t talk,’ [that person]
will go and tell another one, and they will go to another one [saying,] ‘Don’t you say it but that one is positive’. (IS17, HIV
positive African woman)
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study II
Some participants also claimed that if they tell people that they are HIV positive, those people will blame them: “I
know exactly how they think in those circles. And I don’t feel like being confronted with this whole thing like that
maybe it’s because of my ‘sins’. I don’t want a whole sermon on it.” (EM7, HIV positive Surinamese man).
Another argument in favour of concealment related to the impact disclosure could have on others. Many HIV
positive participants conveyed that, particularly with parents and children, they opted not to disclose their status
so as to spare those people from pain and from being worried about the person with HIV: “I have told a few of my
closest friends but not my parents because I think it might be too much for them.” (JW2, HIV positive Antillean
man). Another participant described his decision to not tell his parents as follows:
Well, when I knew that I was doing good, I thought it is not really a good idea to tell my parents because it might give
them stress, especially when you are the one that’s prayed for. You will worry them so I thought it is good I keep it like that
[quiet]. (IS9, HIV positive African man)
And yet another participant, when asked why she did not want to tell her children, said she choose not to tell
them because of “the grief it would bring them, that they would not be able to go on with their lives, that they
would be too concerned and that they would think, ‘mom is going to die soon.’” (UM3, HIV positive Surinamese
woman).
Also, PLWHA reported concealing their status so that others would not be subjected to courtesy stigma. Courtesy
stigma, also termed stigma by association, is a phenomenon whereby the negative attitudes towards a stigmatised person are extended to people associated with that person (Goffman, 1963, Neuberg, Smith, Hoffman &
Russell, 1994). In our study, quite a few participants mentioned wanting to spare others, and particularly their
children, from stigmatisation by association. One participant said that she would not tell others “especially for my
son. They will point at him and I don’t want that.” (UM4, HIV positive African woman). Another said, “Your kids
suffer. Everyone will tell the other kids and then my kids won’t have friends anymore. No, leave that problem to
me. Let me experience it all, not my kids. I want them to have a good childhood.” (UM1, HIV positive Antillean
woman).
One additional reason for not disclosing one’s status is that one is ashamed of having HIV. When asked why she
has not told people that she is HIV positive, one participant answered, “Because of the shame it carries, the disgrace it carries.” (IS13, HIV positive African woman). Another said, “I’m ashamed of it. I am ashamed that I have
HIV. I don’t tell people. Those who know, know. I am just so ashamed of it.” (MB7, HIV positive Surinamese man).
A final argument in favour of concealment provided by the HIV positive participants in this study was that their
status was really nobody’s business. These participants felt no need or obligation to share their status while they
are still healthy and able to function. One participant stated, “I don’t see any reason to tell them yet that this is the
situation. I don’t tell them when I have a headache or stub my toe, cross the street, etc. Likewise, I don’t feel it is
valuable to tell.” (IS3, HIV positive African man). Another participant indicated that she would only tell people if they
do something with that information other than gossip. She said, “I always consider, if I tell you, what are you going
to do with that information? What would you do? Is it important for you?” (SS2, HIV positive Antillean woman).
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Table 3.5 Reasons for disclosing and concealing HIV status
In favour of disclosure
One trusts confidant.
One needs to share secret with someone.
One seeks social and/or financial support.
One wants to start a new romantic relationship.
One wants to warn against sexual risk taking.
In favour of concealment
One fears stigmatisation.
One has had poor experiences with disclosure in the past.
One has observed poor reactions to other PLWHA.
One wants to spare others from worrying about him/her.
One wants to spare others from stigmatisation by association.
One is ashamed of HIV status.
One sees no need to share status with others.
Clearly, when we look at the arguments in favour of and against disclosure, it becomes apparent that PLWHA
often struggle when it comes to determining whether or not to tell someone they are HIV positive. It is interesting
to note that the arguments for and against HIV status disclosure cut straight across all ethnic groups studied and
that no single argument seemed to be most characterised by one group.
3.2.3 Manifestations of HIV-related stigma
A number of negative reactions or, alternatively termed, manifestations of stigma were reported by the PLWHA in
this study and confirmed by their HIV negative counterparts. These are outlined below and summarised in Table
3.6 on page 54.
Avoidance, rejection, abandonment and exclusion
When we think of stigmatisation, the behaviours that most readily come to mind are behaviours such as avoidance, rejection, abandonment and exclusion. Indeed, these forms of stigmatisation were reported by the PLWHA
in our study. While theoretically avoidance, rejection, abandonment and exclusion are all different behaviours, in
the interviews, most participants spoke of these forms of stigmatisation interchangeably. Many HIV positive participants reported being avoided, abandoned, rejected and excluded by people in general. One participant said
“People who you try to trust and tell them, that would be the last time you see them. They wouldn’t want anything to do with me anymore.” (IS2, HIV positive African woman). Another stated, “At a certain point in time, they
distance themselves.” (RB3, HIV positive Antillean and Surinamese man).
Quite a number of participants also conveyed experiences in specific settings. Some reported having been
avoided, rejected or abandoned by their family following the disclosure of their status.
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I was there [in her home country] for two weeks and I feel something is not right, what is going on here? Something is not
right; I am trying to get people close, even my own mother. What is going on? They would talk to me but would – it is not
like that welcome where they talk for hours and you would not even sleep and you don’t even sleep, you know. You’re just
talking through it [the night]. But it was not there. It was a distance. (IS8, HIV positive African woman)
I used to go to their home. They would invite me, you know. I don’t get invited anymore. It’s like I’ve been forgotten. I have
two cousins that are like siblings to me and they are doctors and they don’t even want to have any contact with me. (MB9,
HIV positive Surinamese man)
Others reported experiencing rejection from friends: “[I have] friends who did not want to cooperate with me
because I was HIV positive, who did not want to really see me anymore or have me as part of the company.”
(IS9, HIV positive African man). Among Antillean and Surinamese participants, negative reactions from friends
were less frequently reported than among African participants. This may be because Antillean and Surinamese
participants are more selective in their disclosure than the African participants in our study. Alternatively, the stigmatisation of PLWHA in African communities may be more explicit.
Another situation in which PLWHA often experienced rejection, abandonment and/or avoidance was with partners
and when dating. In fact, for all three ethnic samples, this was a very commonly cited setting for this negative
reaction, perhaps because partners are often the first to know about one’s HIV status and because of the obligation many PLWHA feel to inform new sexual partners of their status. In our study, participants conveyed having
experienced rejection from the partner they were with at the time of diagnosis: “The relationship was good. When
he heard I had HIV/AIDS, he stayed for a bit but, after a while, he was [snaps her fingers to imply ‘gone’].” (UM1,
HIV positive Antillean woman). Participants also indicated being rejected by new potential partners: “When I told
a guy that I am HIV positive, he said, ‘I’ll call you’ but he never did, so I think he was pretty spooked.” (EM3, HIV
positive Surinamese woman).
These forms of stigmatisation, namely avoidance, rejection, abandonment and exclusion, were acknowledged
and, in fact, well-recognised by the HIV negative participants in our study. One participant said, “As soon as
people know that someone has the virus, that person is no longer part of the group. They would rather not spend
time with that kind of person.” (DT2, HIV negative Antillean woman). Moreover, in a number of interviews, HIV
negative participants indicated that PLWHA are essentially seen as ‘pariahs’ or ‘untouchables’ – as people that
one would rather not associate with. One participant stated, “The reactions are just really negative. That person
essentially gets a label. For people who don’t know him well, he is, in a matter of speaking, really a ‘pariah’.”
(SS2, HIV negative Antillean woman). Another said the following:
It is almost as though they are the untouchables. There is this sympathy but a displaced sympathy. There is sympathy as
long as they are at a distance from you. You know, you sympathise at a distance. But it is not that you welcome them in
your home and take care of them. There is sympathy for as long as it is not your business. (PAM4, HIV negative African
woman)
Reflecting on the above, we can contend that avoidance, rejection, abandonment and exclusion are likely related
to many of the dimensions of stigma reported earlier. For example, when HIV is considered highly severe and
PLWHA are presumably on their death bed, emotional ambivalence may occur and social interaction may be
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strained. HIV negative people may not know how to best approach a person with HIV and, consequently, may
opt to simply not interact, thus leading to avoidance and abandonment (Dijker & Koomen, 2003; Katz, 1981).
Avoidance, abandonment, rejection and exclusion may also occur as a result of certain moral judgments. When
PLWHA are thought to have acquired their infection through irresponsible or norm-violating behaviour, people
without HIV may no longer want to associate with PLWHA (Dijker & Koomen, 2003). Both the connection with
severity and the connection with moral judgments are exemplified in the following citation: “If you hear that
someone has HIV, you always think, ‘Distance!’ because people associate HIV with bad behaviour. And people
think, ‘He’s going to die anyway. He’s going to die and I want nothing to do with him.’” (EM5, HIV negative
Surinamese man). Lastly, this form of stigmatisation is also related to perceptions regarding the contagiousness
of HIV. When HIV is considered highly contagious, avoidance and exclusion are also more probable as illustrated
in the excerpt below.
Some people don’t even believe that it is not transmittable, that you will not get it through physical contact. So people
want to avoid you. People don’t want to relate with you. Even some of your friends can decide to be very distant with you
when they realise now you are HIV positive. (PAM1, HIV negative African woman)
In fact, a high level of perceived contagiousness can generate a number of specific forms of avoidance including increased physical distance, a lack of willingness to share and excessive protective measures (Bos, Dijker &
Koomen, 1999; Crandall & Moriarty, 1995; Dijker & Koomen, 2003). These are discussed below.
Increased physical distance and excessive protective measures
Among PLWHA from all three ethnic group samples, numerous participants reported experiences whereby they
observed that people do in fact maintain greater physical distance in social contact with them. One participant
said, “If he [a friend] greets me, if we were kissing before, now he would give the hand from one meter or two
meters.” (IS12, HIV positive African woman). This was confirmed by the HIV negative participants who reported
that, if they were to come into contact with an HIV positive person, they would maintain some additional physical
distance: “I’d prefer to have as little contact – physical contact with that person as possible.” (SS1, HIV negative Antillean woman). Alternatively, HIV negative participants reported that others create more physical distance
between themselves and PLWHA. One participant said, “People are reluctant to come closer to those who may
have HIV.” (CR1, HIV negative African man).
Many HIV positive participants also reported that people not only maintain physical distance but also avoid actual
physical contact with them. Numerous participants reported incidents whereby people without HIV were unwilling
to sit next to them, touch them or shake their hand.
Participant: There are some people whom you tell and they do not have much knowledge and therefore they still think they
get AIDS maybe by handshaking or maybe by –
Interviewer: So don’t they shake your hand? They shake hands with the other ones?
Participant: Yeah, they ‘Hi’. You know, that ‘Hi’ and waving at you. They just wave and say, ‘Hi, how are you?’, and then
that’s it. That is how it ends.
Interviewer: Were they hugging you before?
Participant: Yeah, before we had like really a very good relationship, not hugging as such, but we would shake hands.
(IS5, HIV positive African woman)
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Increased physical distance as a reaction to PLWHA was even reported to have occurred within romantic relationships:
[My ex-partner] also thought if he slept with me, he would get infected. We would both die and the children would be all
alone. It was one grand hassle because he was so scared to sleep with me, even with a condom. He didn’t even want to
kiss me on the cheek. (UM1, HIV positive Antillean woman)
Participant: [My ex-husband] didn’t want to eat or drink with me. Sometimes, he didn’t want to sleep next to me.
Interviewer: Even when you were still together?
Participant: Yes, he found it difficult to touch me. He wore gloves.
(UM4, HIV positive African woman)
Further, the HIV positive participants in our study claimed that the fear of physical contact among HIV negative
people also extends to things that PLWHA touch. Participants thus indicated that many people would rather not
eat food prepared by an HIV positive person nor would they eat from dishes or cutlery or drink from a glass previously used by a person with HIV. One participant said, “When I am with my relatives, suppose you want to cook
or maybe just handling food – they don’t feel very comfortable for me to handle food, especially food that you eat
without cooking like apples or whatever.” (IS5, HIV positive African woman). Another said, “I have a friend and
her family said, ‘You let that person in your house and you guys eat from the same plate? Don’t you have a special plate and special glass [for her]?’” (UM2, HIV positive Surinamese woman). Yet another told the interviewer,
“When I am at his [participant’s brother’s] place, it’s like – I just heard myself – [I heard] him saying to the wife,
‘Whatever he uses, keep it somewhere different. Don’t mix it: the cups, the glasses, the spoons.’” (IS9, HIV positive African man). Some other examples of people not wanting to touch things associated with an HIV positive
person are as follows:
I don’t like to talk negatively about my country because I am proud of my country and of all the people that come from
it but a problem we have is that when someone knows that you have AIDS, then they think you are a dirty person. You
understand? You can’t sit here and, if you do, when you go, they’ll have to clean your chair. And if I drink some water from
a glass, the glass has to be kept separate so I can use it again if I come back. (MB28, HIV positive Antillean man)
Participant: We were staying in a room with four people. The sink – nobody was using the sink anymore.
Interviewer: That was nice. Then you have it all to yourself.
Participant: They’d watch which [bathroom] you go to and then nobody goes to that bathroom anymore.
(IS2, HIV positive African woman)
This kind of stigmatisation whereby people choose not to touch things that have been used by an HIV positive
person was confirmed by HIV negative participants. One participant said, “I wouldn’t drink out of the same glass.”
(GA1, HIV negative Surinamese woman). Another participant stated, “If I see a person with AIDS and that person
has sat on a chair. If he gets up, I won’t go sit on that chair.” (INDS2, HIV negative Antillean man).
Even among PLWHA, this form of stigmatisation was reported to occur. In fact, one participant claimed that she
would not eat food prepared by another HIV positive person who has either visible symptoms of HIV or visible side
effects of antiretroviral therapy.
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Interviewer: So what would you do because you say you were scared like if she touches food? So if she would make food,
would you eat it or what?
Participant: I would not.
Interviewer: Even now?
Participant: No, now – I don’t live with her now, so –
Interviewer: So what would you do if she made food and said, ‘Here is food.’
Participant: I don’t know what I can do.
Interviewer: But was she not cooking when you were living together?
Participant: If she was cooking, I would not eat.
Interviewer: What would you say then?
Participant: ‘I’m okay, I don’t feel like eating.’ Or I would get me bread and eat.
(IS17, HIV positive African woman)
Excessive protective measures were also reported to occur in Dutch health care settings.
In a hospital in [city removed], I really thought, ‘These people need to go back to school!’ I mean, I can understand wearing gloves when you take blood but do you really need to wear gloves the whole time you’re with me? I don’t think so.
(MB29, HIV positive Surinamese woman)
I went to a dentist and that woman put on two pairs of gloves and she let me wait right until the end so that I was the last
person. And she said I wasn’t allowed to spit into that tray. I had to spit into a cup and then throw it away myself. I was so
insulted, so insulted! I never went back to that dentist. Never again! (UM1, HIV positive Antillean woman)
While increased physical distance and excessive protective measures were reported by members of all three
ethnic group samples, the data from both HIV positive and HIV negative participants suggest that this form of
stigmatisation plays a slightly more prominent role in African cultures than in Antillean and Surinamese cultures.
As stated above, increased physical distance and excessive protective measures are strongly linked to perceptions regarding the contagiousness of HIV, and to the related notion that PLWHA are ‘dirty’. In fact, this manifestation of stigma is a logical consequence of believing that HIV can be contracted through casual contact as
illustrated by many of the excerpts in this section. To those who believe that HIV can be acquired through casual
contact, increased physical distance and a lack willingness to touch a person with HIV or things associated with
that person is simply a matter of protecting oneself. In the words of one HIV positive participant, “Some people,
they discriminate but, to them, they don’t think it is discrimination. They think they are protecting themselves
against you.” (IS5, HIV positive African woman).
Gossip
Another very relevant manifestation of stigma reported in our study was gossip. In fact, gossip about PLWHA was
reported by both HIV positive and HIV negative participants from all three ethnic group samples. A large number
of HIV positive participants described in the interviews experiences in which they had been the subject of gossip.
For example, one participant said, “I told some friends, my closest friends actually, and later people came up to
me and said, ‘So and so told me that you have ‘it’’ and I was really bothered.” (JW3, HIV positive Antillean man).
Another said, “It is a very unpleasant feeling seeing people talking about you from a distance. I know what they
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are talking about, and then someone you thought was a friend is not a friend anymore.” (IS2, HIV positive African
woman).
One participant indicated that she had even been gossiped about by a fellow HIV positive person: “I’ve been
through it with one friend who also has HIV. I talked to her and she went and talked about me with those other
women. She talks to everyone!” (UM4, HIV positive African woman).
HIV positive participants not only reported being gossiped about by their friends and social circles but also by
their families. One participant stated, “I chose to tell my cousin and another aunt and I know for sure that they
didn’t keep it to themselves. They told other people.” (SS2, HIV positive Antillean woman). Another participant
said that her aunt “told everyone with the consequence being that I had to, in a grand rush, tell my children. I
didn’t want them to hear it from someone else because, if you hear it from someone else, it’s ten times worse.”
(MH1, HIV positive Surinamese woman).
Ex-partners were also reported to be a source of gossip: “I went to the doctor with my boyfriend at the time and
he told all his friends. I wasn’t happy about that because I think it is something private – my private matter.”
(JW5, HIV positive Antillean man).
In similar vein, a number of PLWHA in our study also reported violations of confidentiality by religious leaders,
community and/or social organisations and even the health care sector. One participant indicated that her pastor
failed to keep her secret: “He is telling people he is trying to break this thing [stigma and taboo], that people
don’t have to be laughing at other people [PLWHA] but he is the one who is not keeping secrets for people having
HIV.” (IS16, HIV positive African woman). Another participant said that he was approached by a member of an
organisation that had his status on file and asked if he indeed was the one on file with HIV: “I think it wasn’t in
bad taste but still I didn’t like it very much. I thought my information was confidential. My information is not very
confidential.” (IS3, HIV positive African man). Yet another participant spoke of a social worker who had informed
others that she is HIV positive: “I told one woman, a social worker, that I’m HIV positive. She went and told someone else and one day they came to my caravan to see what an HIV positive person looks like.” (IS12, HIV positive
African woman). Lastly, as exemplified in the following excerpt, confidentiality has also been reported to have
been violated by professionals in the health care sector.
Interviewer: Okay, you said the family member that went with you to test is the only one that you told. Why did you choose
to tell him?
Participant: Yes, the only person to know.
Interviewer: When did you have to tell him? Why did you choose to tell him?
Participant: The fact was that, after the test, the doctor invited him and even told him about the test before telling me.
Interviewer: Oh. What hospital was that?
Participant: It was in [city removed]. It was a private clinic. I initially went to a house doctor [general practitioner] and he
sent me for a test at the clinic. Afterwards, we had an appointment and my cousin came with me and the doctor let the
news out to my cousin before I saw him.
Interviewer: Were you very sick or what?
Participant: I wasn’t sick, I was only shedding weight.
(IS7, HIV positive African man)
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In further reference to the health care sector, some participants, who fear that others will find out about their HIV
status and subsequently gossip about them, complained that some health professionals lack discretion.
Participant: I used to have a different pharmacy. If I need four, I’d get two months worth and that is six boxes and, at my
old pharmacy, they nicely put that in a bag and say, ‘Here you go’, but now, at my new pharmacy, they just put everything
on the counter. Now, if people know what kind of drugs I get, they’ll also know what I have and I just don’t think it’s right.
I don’t want to talk about it and I think that people should respect that … I think that if you take certain drugs, they don’t
need to be put on display … And it is a small pharmacy and then imagine where you are sitting is the counter and all the
people are standing here [indicates the distance]. Everybody can see it. I mean some people don’t know what it is but
some do. (MB35, HIV positive Antillean man)
The fear of being ‘caught’ and then gossiped about was clearly present among the HIV positive participants in our
study.
If I am in the hospital, I always say to the nurse, ‘If you see me talking to someone and you need to ask me something,
don’t ever talk about it. And with the medicine too – don’t ever give it to me if other people are around because then they’ll
see what it is.’” (MB28, HIV positive Antillean man)
The prominent role of gossip as a reaction to PLWHA was also confirmed by HIV negative participants: “If someone has HIV and people know that, they’ll gossip.” (DT1, HIV negative Antillean man). Another said, “Rumours
will spread and before you know it, the whole Surinamese community will know.” (RB5, HIV negative Surinamese
man). Interestingly, many participants claimed that gossip and the spreading of rumours is in fact part and
parcel to their culture because “everyone knows everyone. We all know each other, and we have, in this small
Surinamese community, practically grown up together as brothers and sisters.” (EM5, HIV negative Surinamese
man). Participants also reported that the Surinamese and Antillean communities have websites that are used to
spread gossip and rumours: “In the Surinamese community, you have an internet site where people gossip about
each other and bitch about each other and those kinds of things.” (MB6, HIV positive Surinamese woman). An
Antillean participant confirmed this for her community: “There is a site and if someone knows that someone else
has AIDS, they can put it on the site with a picture.” (RB1, HIV negative Antillean woman).
Evidently, gossip is a very relevant manifestation of stigma towards PLWHA. One might ask why PLWHA are so
often subjected to this kind of stigmatisation. Are fellow community members simply malicious and cruel? The
data suggest that this is not the case. Numerous participants reported that gossip often occurs under the guise
of a warning. People are informed about other people’s status so that they can be saved from potentially being
subjected to a source of contamination. One participant said, “If I was just standing there having a conversation
with a guy, they go to him after the fact and say, ‘You need to be careful because that girl has AIDS.’” (UM2,
HIV positive Surinamese woman). Another said, “People talk, they tell it everywhere, ‘Be careful with that man.’”
(MB28, HIV positive Antillean man). Yet another said, “There are some girls who know that I’m HIV positive. So
they were telling some people outside. So those people were pointing at me, ‘Oh, she is HIV positive. You have to
be running, start running away from her.’” (IS16, HIV positive African woman). Lastly, one HIV positive participant
who is very discrete about status dated a woman who is less discrete and was warned by people that he should
be careful not to get HIV because the rumour was that his partner had it.
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She [participant’s partner] was so careless with the people she lived with so she exposed the situation and it was terrible.
So people kind of isolated her and said things about her. And it happens that some of them knew that I was dating her so
they came to me and said, ‘Do you know that this girl has AIDS – that this girl is sick and you must check yourself? You
can check yourself because this girl is sick and everybody knows that.’ They just said that to keep an eye on me to save
me from getting sick. (IS7, HIV positive African man)
Like the previously mentioned forms of stigmatisation, gossip was found to be present in all three ethnic group
samples. The only difference between the groups found was that gossip was the most prominent manifestation of
stigma among the Antillean and Surinamese participants. While it was also very present in the data derived from
African participants, in that sample, increased physical distance and excessive protective measures appeared
to play a slightly greater role than gossip. In the Antillean and Surinamese samples, the opposite was the case.
Gossip played a slightly greater role than increased physical distance and excessive protective measures.
Gossip as form of stigma is liable to be, at least in part, the consequence and perhaps also, in part, the cause of
myths regarding the severity of HIV. Its prominence in the ethnic groups studied is also likely related to the associations HIV has with norm-violating behaviour such as promiscuity and homosexuality. If HIV were not associated
with extreme circumstances (severity) and behaviour (deviance), PLWHA’s HIV infections would probably not be a
major topic of interest. Further, in accordance with Rimé and colleagues (1998), gossip may occur because most
people are simply inclined to share emotional experiences, such as hearing about someone’s HIV infection, with
others.
Blaming, disdain and negative remarks
Another negative reaction to HIV status disclosure reported in our study was blaming, disdain and negative
remarks. While these forms of stigma were less commonly reported than the manifestations already described
above, they were nonetheless reported by a number of HIV positive participants in all three ethnic group samples.
One participant said that others have commented that she “has slept with all sorts of men and that is why I’m
now sick.” (MB21, HIV positive Surinamese woman). Another participant indicated that she was blamed by her
husband and his relatives for apparently bringing HIV home: “They were saying that I contaminated him [her husband].” (IS12, HIV positive African woman). Yet another participant reported being blamed for her HIV status by a
health professional.
Participant: An experience that really impacted me was when I went to have my uterus examined and I was admitted. The
gynaecologist was a woman and she, of course, had read my status and she was really rude.
Interviewer: How?
Participant: Really rude and stuff like ‘You shouldn’t have gotten that.’
Interviewer: She said that to you like that?
Participant: Yes, it really impacted me.
(UM3, HIV positive Surinamese woman)
One other participant conveyed how she had felt blamed and negatively spoken about by HIV prevention theatre
productions in her home country.
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They were talking about HIV and there was some music they composed: ‘These people, they were so thin, and they have
taken the medication. Now their bodies, they are big, you can see them. People, watch out!’ – something like that. I was not
feeling comfortable. These people were looking at me like, ‘She was thin, and she’s okay now maybe because of the medication’. But what do you think? People composing music like that – like ‘See those people, they have become big, they were
very thin, now they have taken medication. See! Watch out people!’ What is that? (IS16, HIV positive African woman)
Other participants, who have chosen to conceal their status, reported having heard others make statements
about PLWHA that are blaming or negative, thus further encouraging them to keep their status a secret: “I
have talked to people, intelligent people, who say, ‘Cancer is something that happens to you but HIV is something you’ve done yourself. You are in essence responsible for it happening.’” (JW5, HIV positive Antillean man).
Another participant, when asked how people react to other PLWHA, said, “The reaction was usually like, ‘He
brought it on himself.’” (RB3, Antillean and Surinamese man).
A number of HIV positive participants in our study also claimed that, even when they are not explicitly blamed or
subjected to negative remarks, people nonetheless look down on them. One participant said, “Nobody will dare
respect you or talk nicely to you if you are infected.” (IS13, HIV positive African woman). Another stated, “When
there are sick people that are positive, they talk less of them then when they have somebody very close to them.”
(IS7, HIV positive African man). This was indeed acknowledged by HIV negative participants: “They are people that
are looked down upon. They are second rate citizens.” (DT2, HIV negative Antillean female). Another participant
said, “In no time, people no longer look up to you but rather down at you.” (EM5, HIV negative Surinamese man).
Yet another said, “I think they are not viewed with good eyes as in many other communities.” (CR1, HIV negative
African man).
In comparing the ethnic groups, it was clear that all three ethnic group samples reported blaming, disdain and
negative remarks about and towards PLWHA but less so than the other manifestations of stigma outlined in the
previous sections.
Blaming, disdain and negative remarks are clearly linked to ideas regarding personal responsibility (Bos et al.,
2001; Dijker & Koomen, 2003). The data has shown that indeed when PLWHA are thought to have acquired their
HIV infection through behaviour they freely chose to engage in, other people are more likely to blame them for
being irresponsible and thus acquiring HIV.
Silence and denial
The final manifestation of HIV-related stigma relates to the taboo on talking about HIV and behaviours that are
related to HIV such as homosexuality and promiscuity.
Numerous participants reported that following their disclosure, the topic of their HIV infection was never discussed again. This was reported to occur particularly, but not exclusively, in family settings. In these situations,
it is as if disclosure never happened. One participant said, “They know but they act like they don’t. The family
members that know act like nothing is going on.” (UM3, HIV positive Surinamese woman). Another said, “Some
of them just ignore it if I tell them. They don’t ask again ever. They just pretend as if I didn’t say anything.” (IS4,
HIV positive African woman). Yet another conveyed, “It’s never talked about. They don’t ask about it. They don’t
say anything. No ‘How’s your health?’” (JW5, HIV positive Antillean man).
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Some participants also claimed that the topic is even avoided when they bring it up themselves: “When I want to
talk about, especially with family, they don’t want to hear about it.” (UM1, HIV positive Antillean woman). Another
participant said that when she talks to her family about it, the following happens:
Their reaction is ‘What? What are you talking about? No.’ It’s total denial. It’s like there is nothing going on. They never talk
about it. They never ask. And when I bring it up, they change the topic so I don’t talk about it anymore. (MH1, HIV positive
Surinamese woman)
Also, a number of participants claimed that the denial and lack of willingness to talk about HIV extends to their
community where HIV is a taboo topic. According to these participants, the African, Antillean and Surinamese
communities in the Netherlands and back home do not want to acknowledge that members of their community
indeed have HIV.
Participant: My mother recently said in passing that he [a family member] had AIDS. And then she moved on to talking
about something else. And that is typical for Surinamese people.
Interviewer: That people would rather not say it?
Participant: Exactly! You know, like most people that die of HIV/AIDS had ‘cancer’. You know, those kinds of things are said.
(MB29, HIV positive Surinamese woman)
Denial and silence as a reaction to HIV status disclosure may be rooted in a kind of vicarious shame for the
apparently irresponsible or norm-violating behaviour of PLWHA (Bos et al., 2008; Dijker & Koomen, 2003). If this
is the case, it is not surprising that this kind of reaction most frequently occurs within families. Parents and siblings may be ashamed of their family member who has HIV or they may fear courtesy stigma. For these reasons,
they may opt to simply not talk about it. Denial and silence may also be linked to ideas about severity. Quite possibly, family members of PLWHA fear that their child or sibling will die of AIDS and thus utilise the avoidant coping
strategy of denial. This is exemplified by the following excerpt: “My mother knows but she won’t talk about it. It’s
too hard for her. If it comes up, she just tries to talk around it.” (MB29, HIV positive Surinamese woman). Clearly,
denial of HIV is a relevant manifestation of stigma in African, Antillean and Surinamese communities living in the
Netherlands.
In short, in our study, a number of negative reactions to disclosure or, otherwise termed, manifestations of stigma
were reported by HIV positive participants and confirmed by HIV negative participants. These include avoidance,
rejection, abandonment, exclusion, increased physical distance, excessive protective measures, gossip, blaming,
negative remarks, disdain and, lastly, denial.
In the context of interpreting these reactions, it is important to note that, while some participants in the HIV positive samples were unable to report enacted (actual) stigma experiences because they have chosen to conceal
their HIV status, they did convey their fears of stigmatisation and also their observations of how other PLWHA
who are open about HIV status have been treated by their ethnic community. In the analyses, both kinds of
reports were taken into consideration as it is not only enacted stigma but also perceived stigma that impacts the
well being of PLWHA. Further, it is important to note that most participants in this study were interviewed in a
language other than their mother tongue. Caution should thus be applied in interpreting individual citations from
participants. Lastly, it is important to recognise that participants often did not always distinguish between their
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Table 3.6 Manifestations of stigma
Avoidance
Abandonment
Rejection
Exclusion
Increased physical distance
Excessive protective measures
Gossip
Blaming
Disdain
Negative remarks
Denial and silence
situation in the Netherlands and the situation in their home country. Nonetheless, in general, the situation in
one’s home country was almost always considered to be more negative than the situation in the Netherlands.
On a more positive note, it is important to acknowledge that not one HIV positive participant reported only negative reactions to disclosure. In fact, most participants described a number of incidents and situations in which
their disclosure had been met with kindness, understanding and the provision of social support. While this report
does not expand on these reactions, their existence must be acknowledged.
3.2.4 Consequences of HIV-related stigma
Stigma can have a significant negative impact on the social relationships and psychological well being, as well as
the health, of PLWHA. In the sections below, the consequences of stigma as reported by the HIV positive participants in our study are described. These are also summarised in Table 3.7 on page 58.
Social consequences
Research has shown that HIV-related stigma can negatively impact social relationships (Alonzo & Reynolds, 1995;
Fife & Wright, 2000; Mawar, Sahay & Mahajan, 2005). Stigma can disrupt relationships with family, friends and
others thus resulting in a decreased social network and, in some cases, social isolation. In our data, the impact
of actual stigma experiences (enacted stigma; see Jacoby, 1994) on social relationships was less apparent than
the impact of the fear of stigma. In essence, participants did not commonly report being excluded from social
circles but rather they reported that they had voluntarily withdrawn from their social circles. This was done in an
effort to avoid situations in which they would either be compelled to disclose their status or be subjected to stigmatising reactions, in the event that their HIV status is known. One participant said, “I don’t call because I don’t
know how to tell them that I am HIV positive and I don’t know how they will react.” (MB7, HIV positive Surinamese
man). Another participant said that he would rather not spend time with people because “imagine that the question arises, that you have a conversation and things come up and you think ‘I have to tell them.’” (JW3, HIV positive Antillean man). Yet another participant said the following:
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It also feels like you are no longer part of them. Things have changed because of my status. Therefore, the relationship
even with the church people has also changed. You don’t really feel like you still belong to the same group of people. (IS5,
HIV positive African woman)
The HIV positive participants in our study further conveyed that they not only find it difficult to maintain old social
circles, they also find it hard to meet and spend time with new people.
When I meet new friends, I don’t feel like I will tell them about myself because if I like people, I don’t want to loose people
like I lost the other friends. And that is very difficult for me. It is living with your friends without telling them who you are,
what you are and what about your health and all these kinds of things. It is not easy. It makes life kind of difficult. (IS9,
HIV positive African man)
A particularly relevant setting in which stigma has negative social consequences was dating and romantic relationships. The data clearly showed that stigma, and more importantly, the fear of stigma hampers the development of new relationships. A number of participants conveyed the difficulties they experience in finding a partner
and starting a new relationship as illustrated in the excerpts below.
Sometimes, when a see a nice guy, I think, ‘Oh.’ And then I haven’t even said it. I’ve now come to the point that I wait. But
then I spend so much time fretting about when I should tell him and worrying that he’ll hear it from someone else first and
‘How will he react?’ (UM7, HIV positive Surinamese woman)
See, you go out to a gay bar and you hope to meet someone. I have been alone for five years and, ok, you drink a beer,
you talk but do you really have to say, right from the start, ‘I am an HIV patient’ or do you wait until something happens?
A little something? A lot? I don’t ever know when to tell. I don’t have the guts to say it so I just do talk small talk about
everything and anything but not about HIV. (JW3, HIV positive Antillean man)
HIV is a small world. We have groups, places. People come together, people living with HIV but you want to have a relationship with a man or a woman and, in most cases, you don’t find a match in this small group. And if you do find the match
outside, it’s difficult because then the question that comes to the mind is always, ‘Should I tell him or her?’ And if you do
tell, what happens? In most cases the story is: When you tell, the relationship never lasts. They break up. Maybe among
ten, you have only one that will stay. (CR3, HIV positive African man)
For some participants, these kinds of difficulties played a prominent role in their lives at the time of the interview.
In fact, a couple of participants were, at that time, faced with the dilemma of telling a potential partner or giving
up on the possibility of having that relationship.
Whenever you want to start a relationship, that’s when it comes to mind: Stigma … Right now, I don’t have a relationship
but I have met a guy. And, for me, it’s really hard to talk about it. I sometimes throw things into the conversation, some
topics, so I can get an idea of what he thinks. And then I think, ‘Wow, if I tell him, that’ll be the end of it.’ … I asked him
whether he would have a relationship with someone who has HIV and he told me, ‘I wouldn’t do that. It would be a hindrance in my life, for my sex life.’ And from that, you know how someone thinks about it … If you want to start a romantic
relationship, you are going to have to tell that person at some point or another and that person will choose to do it or not
to do it but nine out of ten times, they won’t do it. (RB3, HIV positive Antillean and Surinamese man)
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For a long while, I didn’t have a boyfriend but now – well, I wouldn’t call him my boyfriend but it’s a guy that likes me and
I like him too but I keep him at a distance … because I can see that he kind of wants to get serious and I can’t do that …
because then I’d have to tell him, ‘I have HIV,’ or something like that. I know for sure if I tell him, he’ll leave and he’ll be
really mad. (MB6, HIV positive Surinamese woman)
Some participants indicated that their fear of rejection from a potential partner is such that they no longer bother
with new relationships because they believe that disclosure to a new sexual partner will inevitably lead to stigmatisation.
Anytime you want a relationship with someone, you have to think ‘I am sick. I have HIV and how am I going to tell this
person?’ After a while, you a reach a point that you don’t want to do it … I am alone and I don’t have a partner, and I
don’t want a partner because you’ll tell that person and may he will push you away because you have HIV. No, I’d rather be
alone with my kids. (UM1, HIV positive Antillean woman)
The only time I get confronted with my illness is in relationships. Especially – I mean, I get in contact with women. Ok, they
are interested but then, inside me, I begin to think about how do I start this? When we come close and they want a relationship and then my situation is different, how do I explain it? Then I begin to think about my illness. Then I try to keep
distant because I can’t keep telling every woman, ‘This is my situation,’ before we can go ahead. So the change is: I just
live on my own. (CR3, HIV positive African man)
Evidently, HIV-related stigma does impact PLWHA’s social lives and particularly their opportunities to get involved
in serious and long term relationships.
Psychological consequences
HIV-related stigma has also been found to negatively influence psychological well being (Crepaz et al., 2008;
Crocker et al., 1998; Lee, Kochman & Sikkema, 2002). Most of the HIV positive participants in our study conveyed that stigmatising reactions and rejection from others has brought them pain, sadness and loneliness.
One participant said, “It hurts like hell. You just want to crawl in a hole and stay there forever.” (IS2, HIV positive African woman). Another said, “So you really feel lost. You really feel like you have been thrown away, you
are being neglected now because of your status.” (IS5, HIV positive African woman). Yet another said, “At that
moment, when those things happen, you feel really small. And you can go and confront that person, yell at them,
but where does that get you?” (JW3, HIV positive Antillean man).
Once again, the impact of rejection from (potential) romantic partners and exclusion from the dating scene had
a significant impact. This particular form of rejection was said to generate a great deal of sadness, pain and
loneliness: “Every time you hear that, ‘Nah,’ or ‘I’ll call you’, it’s painful. It’s a disappointment.’ (UM1, HIV positive
Antillean woman). The following excerpt further exemplifies the experience of loneliness:
Interviewer: What is it exactly that you miss because, quite often, I hear you say, ‘Still I miss that.’ What exactly do you
miss?
Participant: Yes, a pal, a mate, someone in your life that you can go grocery shopping with and cook together with. Now, I
am like, ‘Cook? Why bother? Just for me? I’ll just make a sandwich. I’ll throw some bread in the oven.’ And I want more. I
want to be able to move on like any other normal person with breast cancer or whatever disease. They have a partner that
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goes with them to the hospital, goes with them for checkups. I just miss a normal life. My life is not normal – going to work
and coming home again, going for a beer every now and then. You talk about superficial things. You never go any deeper. I
miss that. My life is superficial … And I feel really alone. There are a million people with HIV and I am totally alone. I can’t
talk about my HIV with people who don’t have HIV. At the same time, I can’t talk to people who do have HIV. Where are
they? (JW3, HIV positive Antillean man)
In addition to pain, sadness and loneliness, a number of participants also conveyed anger and frustration that
PLWHA are stigmatised. One participant said that a negative reaction “made me feel different from other people
and it made me feel very uncomfortable. In fact, it annoyed me. It made me very angry.” (IS4, HIV positive
African woman). Another said, “It makes me depressed and frustrated because I think that by this point in time
– 2005 – people with HIV should be accepted.” (MB29, HIV positive Surinamese woman).
Lastly, the psychological well being of a person with HIV can be impacted by stigma through the internalisation of
stigma (Lee et al., 2002). In our data, we observed a few statements that reflect internalised stigma. One participant indicated that she no longer kisses her nieces and nephews so as to protect them from infection: “There is
in you this feeling that says, ‘I shouldn’t be doing that. I shouldn’t be kissing.’” (IS5, HIV positive African woman).
Another two male participants said they would never have sex with a woman again: “I have never told a girl that
I have AIDS. It’s been four years since I’ve made love. I don’t do it because I am scared to infect someone and I
don’t want to do that to someone.” (MB7, HIV positive Surinamese man). These men did not believe that PLWHA
can have sex if a condom is used. Lastly, one of the above mentioned participants also contended that his HIV
infection “is punishment from God.” (MB7, HIV positive Surinamese man).
Clearly, the psychological consequences of stigma in the form of pain, sadness, loneliness, anger, frustration
and/or internalised stigma were apparent in a number of the PLWHA in our study.
Health consequences
Lastly, HIV-related stigma can impact the health of PLWHA (Chesney & Smith, 1999; Nyblade et al., 2003;
Weiser et al., 2003). Stigma can impact health through its influence on psychological well being and social support. Alternatively, it can impact health directly by, for example, complicating HIV treatment adherence. Quite a
few participants in our study outlined situations in which the fear of negative reactions has inhibited their ability
to take their antiretroviral medication on time. One participant said, “If I am at a party and I need to get up and
take my medication, people will ask why I do that so I just don’t do it.” (MB6, HIV positive Surinamese woman).
Another stated, “One of my sisters is a nurse. If she sees my pills, she’ll know so I don’t take my pills if I’m with
her.” (MB10, HIV positive Surinamese man). Two additional excerpts illustrate in greater detail the difficulties HIVrelated stigma poses for treatment adherence.
During the summer vacation, I often went to amusement parks and then you are in the bus and you agree to meet back at
the bus at 17:00 so you can go home and then it is 18:00 and I am in the bus. I am sitting there with all sorts of people
around me. There is someone sitting next to me who doesn’t know and someone in front of me and she doesn’t know it
either and she keeps turning around to talk. And there was no toilet in the bus and, even if there was, it would be weird
because like who would go to the toilet in the bus with a cup? So it was weird and I needed to take them so I was thinking,
‘Oh God, how am I supposed to do this? How am I supposed to do this?’ (MB6, HIV positive Surinamese woman)
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Table 3.7 Consequences of HIV-related stigma
Social consequences
Decreased social network
Social isolation
Difficulties starting new relationships
Psychological consequences
Pain, sadness and loneliness
Anger and frustration
Internalised stigma
Health consequences
Poor treatment adherence
Interviewer: If you need to take your medication and people see that –
Participant: I don’t ever do that.
Interviewer: You don’t ever do that.
Participant: Because I don’t want that, because I know this is logical. If I put myself in their shoes, I’d know. If I see someone doing something, I’d normally want to know and I would ask.
Interviewer: Ok, how do you do it then? Because if you don’t want people to see –
Participant: I do it real sneaky. I walk away. Once, I was sitting and eating at a table and I had to go to the washroom so I
went quickly and then I realised that I was late with taking those things [pills]. So I was sitting there with my hands under
the table. I got them out and I had them in my hands and then I just took them. At that moment, it’s really unpleasant. For
all I know, they could have seen it and thought, ‘What’s he doing? Why is he doing that?’ … Also, sometimes at work, it’s
time and then you’re busy solving problems and there is no time. I can’t really say, ‘Just wait,’ because they will ask, ‘Why?
What are you going to do?’ If I say that, I have to tell them why I have to take them on time.
Interviewer: So, how do you do that? How do you deal with that then?
Participant: When that happens, I think, ‘I’ll do it when there’s time. Then it won’t be on time. Then it’ll have to happen later.’
(MB35, HIV positive Antillean man)
In essence, the above excerpts illustrate that, for many PLWHA, keeping their HIV status a secret takes priority
over taking their medication on time.
In short, the data in our study derived from HIV positive African, Antillean and Surinamese participants has shown
that HIV-related stigma and the fear of stigmatisation negatively impacts the social and psychological well being
of PLWHA, as well as their health. In the words of one participant, “[HIV] is not that bad. It is more the taboo
around it and how people react. That’s what makes it hard, but the illness itself, right now, it’s not that bad, not
at all.” (SS2, HIV positive Antillean woman).
3.2.5 Coping with HIV-related stigma
PLWHA can respond to HIV-related stigma in numerous ways. Miller and Kaiser (2001) developed a framework
based on the work of Compass and colleagues (2001). This framework outlines the various responses stigma-
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Responses to Stigma-Related Stressors
Voluntary Coping Responses
Engagement Coping
Primary Control
Secondary Control
Coping
Coping
Disengagement Coping
Voluntary Avoidance
Involuntary Stress Responses
Engagement
Problem Solving
Distraction
(compensation)
Cognitive Restructuring (physical avoidance)
(collective action)
(attribution to
(social comparison)
(especially anger)
Emotional Regulation
prejudice)
Physiological Arousal
Involuntary Avoidance
Emotional Arousal
(prejudice minimisation)
Denial
Rumination
(regulate anger/anxiety) (disidentification)
(prejudice minimisation)
Intrusive Thoughts
Emotional Expression
Wishful Thinking
Impulsive Actions
Acceptance
Disengagement
Figure 3.1 Stress and coping models to stigma-related stress and coping
Source: Miller & Kaiser, 2001
tised individuals have to stress from stigmatising experiences (Figure 3.1) by incorporating various theoretical
perspectives on coping (see Lazarus & Folkman, 1984; Major & O’Brien, 2005; Miller & Major, 2000; Zeidner
& Endler, 1996). With their model, Miller and Kaiser (2001) contend that responses to stigma can be voluntary
or involuntary. In the sections below, we focus exclusively on the voluntary coping responses and, in particular,
on two forms of coping, namely engagement and disengagement coping. Involuntary responses are not reported
as these were not measured in our study. The various voluntary coping responses posited by Miller and Kaiser
(2001) and investigated in our study are summarised in Table 3.8 on page 64.
Engagement coping
Engagement coping is characterised by efforts to actively alleviate stressful circumstances, in this case, stigmatising reactions to PLWHA. According to Miller and Kaiser (2001), engagement coping is geared to either increasing primary or secondary control over stressful circumstances.
Primary control coping
In primary control coping, the stigmatised person seeks to change the situation in order to increase personal
control. This can be done through individual or collective problem solving or through the regulation of emotions
and the expression of those emotions.
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As stated above, problem solving can be engaged in by the individual or be conducted collectively. An individual
that engages in problem solving to gain primary control over stigmatisation would likely seek to change the perceptions held by stigmatising individuals through, for instance, social skilfulness or by displaying stereotype disconfirming behaviours (Crocker et al., 1998; Miller & Kaiser, 2001). An example of this kind of coping would be when an
HIV positive person shows that not only irresponsible, promiscuous or homosexual people get HIV. In our study,
we observed that this kind of coping was rarely used. In fact, very few participants were even inclined to confront
people who stigmatise them. Collective action as a form of coping was also rarely observed. Only two participants
in our study (both Surinamese) engaged in some form of activism to change perceptions about HIV and PLWHA.
Another form of primary control coping is emotional regulation and expression. By regulating one’s emotions and
the degree to which one expresses those emotions, PLWHA are expected to more easily overcome stigmatising reactions from others and change others perceptions of PLWHA by demonstrating stereotype disconfirming
behaviours (Miller & Kaiser, 2001; Steele & Aronson, 1995). In our study, we observed very little regulation of
emotions and their expression.
Clearly, primary control coping was not commonly used by the African, Antillean and Surinamese PLWHA in our study.
Secondary control coping
In contrast to our findings for primary control coping responses, our data showed that secondary control coping
mechanisms were actively used by the HIV positive participants in our study. While primary control coping seeks
to change the situation, secondary control coping involves adapting to the situation. Miller and Kaiser (2001)
outlined different forms of secondary control coping. The first is distraction. Distraction involves “engaging in cognitions or behaviours that draw attention away from the stressor” (Miller & Kaiser, 2001, p. 81), in this case stigmatising reactions to one’s HIV status. In our study, this kind of coping was evident. Participants frequently spoke
of focusing on others rather than on their own negative experiences.
[Stigmatisation] makes you sad but I have two children and I just keep going. I think if I were alone that it would be much
harder but I’ve got these two kids. They are my comfort and they keep me busy. (UM7, HIV positive Surinamese woman)
I go out a lot with friends. I see my family – visit my family. I can say that [HIV] makes you realise that life is too short. And
also I help others. Before it was like ‘me and my family, me and my kids,’ but now, where I can help others, I go out of my
way and help them. (IS5, HIV positive African woman)
Some participants indicated that they sought comfort in their faith. This kind of religious coping may also be considered a distraction in which stress-related thoughts are substituted by a focus on God. One participant said,
“In my loneliness, I found hope. I’ve experienced a lot and I often think, ‘I need the strength of God to persevere
– not people.’” (JW3, HIV positive Antillean man). The excerpt below further exemplifies this choice to focus on
God rather than stigmatising experiences.
You see, the Bible says that my life is in His hands. You understand? The word of God offers me a lot when it comes to
dealing with these things. Like I said, if I didn’t have the Lord, I wouldn’t know how to deal with all this HIV misery and the
way people talk about it. (MB18, HIV positive Surinamese man)
Another form of secondary coping described by Miller and Kaiser (2001) is cognitive restructuring. In cognitive
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restructuring, the stigmatised individual changes the way he or she thinks about stigma and those who stigmatise.
This coping response was also very present in our HIV positive samples. The interviews revealed that a number of
participants engaged in cognitive restructuring by attributing stigmatising reactions from others to ignorance.
I’ve also been thinking that maybe the reason they are treating me that way is because they don’t have enough knowledge.
If they had enough knowledge, they would know that I am still the same person. I have also forgiven them for that because
I think they don’t know. (IS5, HIV positive African woman)
When I think about [a stigmatising experience], I still feel angry but then again I feel for those people because I know now
that they are doing no better. They did what they thought was protecting themselves. It was a lack of information and education about [HIV]. (IS2, HIV positive African woman)
These kinds of attributions are termed external attributions (Crocker et al., 1998; Weiner, 1986). Participants
who engaged in external attributions by placing the onus for stigmatising reactions on the ignorance of others
also often reported giving no heed to the negative reactions of others.
I am above this. I am not a victim. I got [HIV] years ago. I am aware of it. I know that I am just human. Sometimes I think,
‘Shit!,’ but life goes on and I try to make the best of it. I am positive about life and if you’re positive, no one can break you.
(JW2, HIV positive Antillean man)
At one point in time, I made it really clear, ‘Listen, we can’t go back and, really, what’s the point? This is the situation I am
in now and I just have to live with it. There is no use in looking back and saying, ‘Had you done this …’ No, this is the situation. I can’t turn back time. I just have to live with it and that’s it.’ (EM6, HIV positive Surinamese man)
I say, ‘Don’t listen to them. Let them gossip and talk bullshit. Whatever!’ I’m doing well and I feel fine and lots of people
have seen that … Let them gossip. You know, I know how I am supposed to deal with this and I know what can happen to
me so I’m not going to get worked up about them. (MB9, HIV positive Surinamese man)
These comments suggest that these participants have chosen to base their personal identity and self worth on
things other than their HIV status. In Miller and Kaiser (2001) framework, this is termed disidentification. In fact,
many participants made comments suggesting that they would rather not base their personal identity on their
HIV infection.
Sometimes when I talk to [my brother], he makes [overly concerned] comments and I think, ‘Come on. I’m not dying!’ He
phoned me this past week and was overly exaggerated in his attempt to take care of me but I don’t want that! I don’t want
pity! (SS2, HIV positive Antillean woman)
I said to [my ex-boyfriend], ‘I won’t be used. Who do you think you are?’ I said, ‘I am not a pitiful or pathetic person.’ I said,
‘I may be sick but I am not pitiful, and I am not ugly!’ (MB6, HIV positive Surinamese woman)
Up until about two years ago, I was someone who always carried HIV with me and now I have kind of left it behind. I don’t carry
it with me anymore. I can laugh now. I can make jokes. I can feel good on my own if I want to. I think I have mourned enough.
I’ve given it a place and if I want to go there, I do, and if I don’t want to do that, I don’t. (JW3, HIV positive Antillean man)
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A final form of secondary control coping found in our data and supported by Miller and Kaiser’s (2001) framework
is acceptance. In our study, quite a few participants indicated that they had simply accepted the fact that people
will stigmatise them. One participant said, “If I accept the fact that I have HIV, I also need to accept that which
comes with it, and that is what I do. It’s hard to accept but you have to.” (EM3, HIV positive Surinamese woman).
Another said, “I had to go through [stigmatising reactions]. There was no other way. You just have to fall down
and push yourself up again.” (IS2, HIV positive African woman).
Evidently, the use of secondary control coping in which PLWHA use distraction, cognitive restructuring and acceptance to deal with stigmatising situations was relatively common among the HIV positive participants in our study.
No noteworthy differences between the ethnic groups were found.
Disengagement coping
Unlike engagement coping in which the stigmatised person seeks to actively lessen the stress of stigmatisation by
either changing the situation or changing how one deals with the situation, disengagement coping is characterised
by avoidance. In Miller and Kaiser’s (2001) framework, three forms of disengagement coping ar outlined. These are
denial or prejudice minimisation, wishful thinking and voluntary avoidance of stigmatising people and situations.
As exemplified in the above section on the social consequences of stigma, voluntary avoidance was very common
among the HIV positive participants in our study. In fact, it was the most commonly reported coping mechanism
in all three ethnic group samples. Many participants indicated that they have disengaged from people who stigmatise and that they purposely avoid situations in which they expect stigmatising reactions to their HIV status to
occur. One participant said, “One of my brothers is very disappointing to me because he won’t let me be around
his children so I decided not to visit him anymore.” (IS9, HIV positive African man). Another participant said, “We
once spoke about HIV and when she [a friend] said, ‘I can’t drink here [together with an HIV positive person], I
had to disconnect from her.” (UM4, HIV positive African woman). Two additional examples are as follows:
I went to a party where people had heard about it [my HIV infection] and whenever there was something to eat or drink,
they would grab mine [plate, glasses, silverware] first. They would wash the rest and throw mine away. I saw it with my own
two eyes so I got up, grabbed my kids and left. (UM1, HIV positive Antillean woman)
My own aunt said to my sister, ‘If your sister comes here, she needs to sit off to the side and we’ll give her her own glass
and spoon.’ I heard that and of course you feel down because your own family thinks that. Then I said to my sister, ‘Ok, I
don’t need to go visit her anymore.’ (UM2, HIV positive Surinamese woman)
Avoidance of stigmatising people and situations is often accompanied by increased identification with people who
share the same stigma (Crocker et al., 1998; Miller & Kaiser, 2001). This too was observed in the data. The following excerpts illustrate this felt need to talk about experiences with other PLWHA.
You realise that society is now taking a negative attitude towards you so you tend to look for those people who are in the
same situation like you because these are the people who understand. You share the same experiences. Maybe they are
also facing the same things that you are facing from society so you tend to click now with those people. And when you
come together, when you discuss these things, you kind of develop coping mechanisms to deal with the situation. You help
each other when these things happen. [You ask,] ‘How have you done it?’ and someone gives you an advice: ‘It happened
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to me and I did it this way’. So it is after society is showing a negative attitude towards you, and then you lean on those
people who are in the same boat. (IS5, HIV positive African woman)
I think you really need someone in your life that you can talk to about it and who has had the same experiences … And
I think that especially for myself and that’s why I was looking for other people with HIV through the HIV Association …
because you reach a point where you might not be dealing with it 24 hours a day but you want to get it off your chest and
it’s not like the internist has all day to listen to you. (MB29, HIV positive Surinamese woman)
Participants also indicated that they were able to deal with stigmatising reactions by talking not only to other
PLWHA but also to other people in their environment who are supportive. In fact, many participants said that it is
the social support of their immediate environment that helps them deal with stigmatising experiences. One participant stated, “As long as the people in my immediate surroundings like my kids are good about it, I don’t really care
what anybody else thinks.” (MB29, HIV positive Surinamese woman). Other participants conveyed the following:
If the people close to you accept you as you are and support you in who you are – it’s because of that that I feel strong,
that I can take on the rest of the world. I don’t care how the rest of the world thinks of me and how they’ll react to [my HIV
infection]. (EM6, HIV positive Surinamese man)
I have learned to lean on those people who are supportive, who understand … My family – they have been a pillar of
strength for me. When things are really down for me, I visit my family, we talk and then it’s okay. (IS5, HIV positive African
woman)
With respect to wishful thinking and the denial of stigmatisation, we were unable to appraise whether participants
who claimed to have not experienced any stigma had indeed been exempt from stigmatising reactions or were
denying the existence of stigma in their lives. If we wanted to establish that, we would need to observe participants in real life situations. Unfortunately, this kind of approach was beyond the scope of our study. However, we
can report that no participants in our study claimed to have never been stigmatised thus suggesting that these
participants were not inclined to minimise the prejudice or stigmatisation they experienced.
In short, the participants in our study reported a vast array of mechanisms for coping with stigmatising reactions.
It is interesting to note that while secondary control coping responses and disengagement coping were relatively
common among all three HIV positive ethnic group samples, primary control coping responses were virtually
absent in our data. This may suggest that the PLWHA in our study feel disempowered and thus unable to change
the behaviour of those who stigmatise.
While it is not included in Miller and Kaiser’s (2001) model for coping with stigma-related stress, we would like to
report on one additional coping mechanism that proved to be highly relevant for our African, Antillean and Surinamese
participants. This coping strategy was quite simply selective disclosure. A number of participants indicated that they
dealt with stigmatising reactions by becoming highly selective with respect to who they inform about their HIV status.
In this way, they were able to exercise control over the likelihood that they would be subjected to stigmatisation.
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Table 3.8 Coping responses to HIV-related stigma
Engagement coping
Primary control
Compensate for stigma through individual behaviour or collective action/activism.
Regulate emotions and the expression of those emotions.
Secondary control
Seek distraction by focusing on others, one’s faith, etc.
Engage in cognitive restructuring by attributing stigma to ignorance and disidentifying with one’s HIV infection.
Accept that stigma is part of having HIV.
Disengagement coping
Avoid stigmatising situations and people.
Increase identification with fellow PLWHA or others who can provide social support.
Other
Selective disclosure
3.3 Conclusion
Our study with both HIV positive and HIV negative African, Antillean and Surinamese people has demonstrated a
number of relevant findings.
Firstly, the perceived contagiousness and perceived severity of HIV impact the likelihood of HIV-related stigma, as
does the degree to which one is considered personally responsible for one’s infection. Further, HIV-related stigma
is perpetuated by associations between HIV and norm-violating behaviours such as promiscuity and homosexuality. These perceptions are exacerbated by taboos on talking about HIV, sexuality and homosexuality.
Secondly, because HIV is a concealable condition, many PLWHA are faced with the dilemma of disclosure.
Disclosure patterns vary extensively from one HIV positive person to another but most employ a number of arguments for and against disclosure when determining whether or not to disclose or conceal one’s status. Disclosure
is more likely when the person trusts the confidant, feels the need to share his or her secret with someone or
is seeking social or financial support. Additional reasons for disclosure include wanting to start a new romantic
relationship and wanting to warn others to curb their sexual risk taking. Disclosure is less likely when the person
fears stigmatisation, feels ashamed, has had poor experiences with disclosure in the past and when the person
with HIV has observed negative reactions to other PLWHA. Additional reasons for non-disclosure are that the HIV
positive person wants to spare others from worrying and from being subjected to stigmatisation by association.
One final reason is that the person with HIV believes that his or her status is a private matter that does not need
to be shared with others.
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Thirdly, a number of manifestations of stigma were established. These include avoidance, rejection, abandonment, exclusion, increased physical distance, excessive protective measures, gossip, blaming, disdain, negative
remarks and denial. These occur in various settings including with family, with friends, in the health care sector
and with other PLWHA.
Fourthly, stigma can negatively impact the social and psychological well being of PLWHA. It can result in
decreased social networks and can cause difficulties starting new relationships, particularly romantic relationships. HIV-related stigma can also generate pain, sadness, loneliness, anger, and frustration as well as the internalisation of stigma. Further, HIV-related stigma can impact health by making antiretroviral treatment adherence
problematic.
Lastly, PLWHA can cope with HIV-related stigma through engagement and disengagement coping mechanisms. In
terms of engagement coping, our results have shown that the participants in our study rarely employed primary
control coping responses but did frequently use secondary control coping mechanisms. These include focusing
on other things or people (distraction), attributing HIV-related stigma to other’s ignorance (cognitive restructuring through external attributions), choosing not to base one’s personal identity on one’s illness (disidentification)
and accepting that HIV-related stigma is part and parcel to having HIV (acceptance). In terms of disengagement
coping, our study has shown that many PLWHA avoid stigmatising situations and people, and identify more with
other PLWHA. They also seek support from their immediate surroundings.
In short, this study with both HIV negative and HIV positive African, Antillean and Surinamese people has
expanded our knowledge of the determinants, manifestations and consequences of HIV-related stigma. It has
also contributed to a better understanding of the reasons underlying HIV status disclosure and concealment and
the means by which PLWHA cope with negative and stigmatising reactions from others.
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4
Recommendations
Both the quantitative study with PLWHA living in the Netherlands and the qualitative study with both HIV positive and HIV negative African, Antillean and Surinamese people living in the Netherlands have shown that HIVrelated stigma is indeed a problem. While cultures do differ with respect to which determinants of stigma are
most present in their culture and the settings in which stigma most frequently occurs, it is clear that many of the
determinants, manifestations and consequences of HIV-related stigma cut across the various cultures included in
our studies. Clearly, HIV-related stigma is not a problem of the past. This demands systematically planned interventions to reduce HIV-related stigma in all communities. Consequently, a number of recommendations for HIVrelated stigma reducing interventions are outlined below and summarised in Table 4.1 on page 72.
4.1 Create awareness of stigma
In order to effectively reduce HIV-related stigma, it is imperative that we increase awareness of HIV-related
stigma. In our interviews with HIV negative African, Antillean and Surinamese people, it was very apparent that
the concept of stigma was poorly grasped by the greater majority of the participants. Few participants really
understood what stigma was and how it impacts PLWHA. In fact, when asked how HIV-related stigma could best
be reduced, most HIV negative participants answered the question as though they had been asked how to best
prevent HIV. This is likely a matter of salience. HIV prevention has been high on national and international agendas for many years and, despite the fact that HIV-related stigma has been an objective of numerous prevention
campaigns, it seems to have received somewhat less attention than HIV prevention in general. With this in mind,
and in accordance with stages of change models (Prochaska & DiClemente, 1983; Prochaska, Redding, Harlow,
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Rossi & Velicer, 1994), we contend that the first step in reducing HIV-related stigma is creating awareness of
HIV-related stigma and its negative impact on PLWHA (Nyblade et al., 2003). Mass media may be an appropriate
forum for the creation of awareness.
4.2 Break taboos
As was shown in the qualitative study results, perceptions that contribute to HIV-related stigma are exacerbated
by taboos, particularly among ethnic communities living in the Netherlands. HIV-related stigma is perpetuated by
a lack of openness about HIV and those topics that are associated with having HIV, namely sexuality and homosexuality. We therefore need to actively work towards promoting openness about such topics in ethnic communities living in the Netherlands through, for example, group interventions. Group interventions are a method that
can likely encourage, enable and empower ethnic community members to talk about HIV and stigma, and consequently break taboos in their own communities.
4.3 Increase knowledge of HIV
Despite relatively high levels of HIV knowledge found in our qualitative study and also in other studies (Bos et al.,
2008), we nonetheless contend that interventions need to continue to focus on increasing HIV knowledge. This
is supported by earlier research that demonstrated that lower HIV knowledge levels are related to HIV-related
stigma (Herek, Capitanio & Widaman, 2002). With respect to reducing HIV-related stigma, we argue for an
approach that specifically targets the determinants of stigma outlined in the introduction and confirmed by the
participants in Study II. These are perceived contagiousness, perceived severity, personal responsibility and norm
violation.
With respect to perceived contagiousness, interventions geared at increasing knowledge should not only focus on
how HIV is transmitted and prevented, but also on how HIV is not transmitted (Herek et al., 2002). For example,
interventions can show that HIV is not transmitted through casual contact such as shaking hands or touching.
Additionally, an intervention that focuses on perceived contagiousness can also point out that PLWHA can have
sex without transmitting the infection if they use a condom and that HIV cannot be transmitted through kissing.
Interventions that aim to increase knowledge about the severity or rather the lack of severity of HIV are also
called for. Such interventions can show that, with antiretroviral medication, PLWHA can live long and healthy
lives. This is thus a matter of educating people about the fact that, in the Netherlands, HIV is a chronic condition rather than terminal disease. Additionally, interventions can aim to educate participants on the differences
between HIV and AIDS.
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study I
In targeting perceptions relating to personal responsibility and the associations between HIV and norm violation, interventions that aim to increase knowledge can focus on the fact that anyone can get HIV, regardless of
whether or not that person is good or bad, gay or straight, or has had many or few sexual partners.
As stated earlier, reactions to PLWHA are often twofold. The initial reaction tends to be automatic and impulsive
while the second is more rational and deliberative. Interventions that aim to increase HIV knowledge clearly target
the second reaction. They are likely to increase one’s confidence to interact with PLWHA and may lead to fewer
negative judgments of PLWHA but are unlikely to impact that initial reaction of fear.
4.4 Encourage contact between PLWHA and others
The initial and more automatic reaction of fear can be targeted by creating familiarity with PLWHA. Quantitative
studies conducted by Bos and colleagues (1998; 2001) and our qualitative study have shown that most people,
with the exception of Africans, have never personally been in contact with someone who has HIV. It would thus
be advantageous to expose people to contact with PLWHA. Numerous studies have shown that contact between
PLWHA and people who do not have HIV can indeed effectively reduce HIV-related stigma (Bos et al., 2008;
Brown, Macintyre & Trujillo, 2003; Brown & Hewstone, 2005; Pettigrew & Tropp, 2006). This kind of contact can
increase awareness of HIV-related stigma, humanise HIV and generate greater sympathy for PLWHA, something
that has been found to be related to positive changes in attitudes towards stigmatised individuals (Batson et al.,
1997).
Contact between PLWHA and people without HIV need not be direct; it can also be vicarious (Herek & Capitanio,
1997). Thus, it is possible to put people in contact with PLWHA through media, stories, videos, etc. However,
direct contact is likely to be most effective.
One important thing to be considered when employing contact with PLWHA in interventions to reduce HIV-related
stigma is the degree to which the HIV positive person in the intervention corresponds with or diverges from the
preconceived ideas people have of PLWHA. Studies on the effects of stereotype-inconsistent information have
shown that when the stigmatised individual employed in an intervention diverges from the stereotypes, that individual will likely be viewed as an exception to the norm (Kunda & Oleson, 1995). He or she will be placed in a
new mental category and will no longer be considered to be representative of the stigmatised group. This is called
subtyping. When subtyping occurs, people are unlikely to change their attitude about the stigmatised group as
a whole. Rather, they only change their attitude about the person in the intervention. It is therefore important
that if and when PLWHA are used in HIV-related stigma reducing interventions, the PLWHA do not substantially
disconfirm the stereotypical perceptions of PLWHA held by intervention participants. Ideally, interventions should
involve more than one PLWHA as this can decrease the likelihood of subtyping.
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4.5 Empower and support PLWHA
While the above proposal to involve PLWHA in reducing HIV-related stigma seems to be a very promising
approach, we must question its feasibility. Our quantitative study has shown that perceived stigma is related to
disclosure concerns and our qualitative study has made it very clear that PLWHA are often inclined to conceal
their status in order to avoid being subjected to HIV-related stigma. Further, the qualitative findings have shown
that the PLWHA in our study rarely, if ever, employ primary control coping strategies that are geared to changing
the situation. It thus appears that particularly PLWHA from ethnic groups are more motivated by a fear of stigmatisation then by a will to change the way others think about them. There are few PLWHA who will take the risk,
be open about their status and actively involve themselves in HIV-related stigma reducing activities and interventions. If PLWHA are ever to reach a point where they are willing to ‘put it on the line’ and fight for HIV-related
stigma reduction through openness about their status, they need to be empowered, supported, counselled and
trained. Although it provides no guarantees, governmental and non governmental agencies and organisations
must work towards creating optimal conditions for public HIV disclosure and the involvement of PLWHA in HIVrelated stigma reducing activities. Additionally, knowing that the behaviour of PLWHA can impact how people
react to their HIV status (Bos, 2001; Hastorf, Wildfogel & Cassman, 1979), it is important to explore the kinds of
coming out strategies that are most beneficial and least likely to lead to stigmatisation as this kind of information
can also empower PLWHA.
4.6 Focus on specific contexts
In order to effectively reduce HIV-related stigma, we must also focus on the specific contexts in which HIV-related
stigma occurs. With the quantitative results in mind, this means that we need to look at the ways in which the
media, including HIV prevention campaigns, contribute to the stigmatisation of PLWHA. It also means that we
need to lobby for policies that ensure that PLWHA are not discriminated against by the financial services sector.
In specific regard to homosexual PLWHA, we must develop interventions and activities that target stigmatisation
in the gay community. Additionally, the party and dating scene needs to be targeted. Lastly, places of employment and the health care sector should receive attention. With respect to the qualitative results, relevant contexts are families, friends and the ethnic community in general. These are more interpersonal contexts than the
financial services sector or places of employment. With interpersonal contexts, HIV-related stigma cannot be
easily changed by, for example, implementing or changing policy. In these contexts, change is likely to be much
slower and gradual. Efforts to reduce HIV-related stigma in these settings are nonetheless required.
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4.7 Ensure that interventions are theory and evidence-based
We contend that HIV-related stigma reduction will only be effective when interventions are systematically planned
and rooted in both theory and in evidence. Both practice and research must guide intervention development,
implementation and evaluation (Bartholomew, Parcel, Kok & Gottlieb, 2006; Bos et al., 2008). Further, we assert
that the involvement of both PLWHA and target groups in all phases of HIV-related stigma reducing interventions
is imperative to intervention success (Bartholomew et al., 2006, Davies & Macdowall, 2006). This means that
researchers and organisations such as the public health services and HIV patient interest groups must work
together to develop interventions that coincide with theory and conduct research that is relevant to the practice
of reducing HIV-related stigma.
4.8 Promote collaboration
HIV-related stigma cannot only be tackled on an individual and community level, it also needs to be prioritised
on a national level. Failing this, individual, interpersonal and community level interventions will have only limited
effects. Given that stigmatisation is a social process that is inherently linked to social inequalities (Parker &
Aggleton, 2003), the role of governments is clear. Governments must place social inequalities and the stigmatisation of PLWHA high on their national agendas and also on international agendas. They also need to ensure
that stigma reduction is supported by policy and legislation. Further, implementing organisations, local governments, non-governmental organisations and professionals need to collaborate so that HIV-related stigma reduction is a concerted and coordinated effort. In the Netherlands, this means that the national government, and in
particular the Ministry of Health, Welfare and Sport (VWS), should prioritise the reduction of HIV-related stigma
towards PLWHA in their policy and in their funding. Likewise, we suggest that implementing organisations (e.g.
the National Institute for Public Health and the Environment [RIVM] and the public health services) collaborate
closely with interest organisations (e.g. STI AIDS Netherlands and the Dutch HIV Association) and also with nongovernmental organisations. Further, funding bodies (e.g. the Dutch Aids Fonds) should be encouraged to facilitate the coordinated efforts of implementing organisations.
4.9 Keep learning and improving efforts
Lastly, we contend that to effectively reduce HIV-related stigma, we need to keep learning from experience, from
practice, from research and from one another so that HIV-related stigma reduction efforts can be improved.
While this report has answered a number of questions regarding, among other things, the determinants, manifestations and consequences of HIV-related stigma, it has also generated new questions: How are the results
of this study translated into practical interventions and activities? Are those interventions effective? Why or why
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not? Why is the media considered to be so stigmatising? What exactly are PLWHA experiences with aggression
in the context of their families and friends? Do people who experience stigma become more reluctant to disclose
or is it the reluctance to disclose that increases perceptions of stigma? What kind of HIV-related stigma reducing
policy and legislation needs to be put in place? How can PLWHA best be empowered and supported? What kind
of interaction strategies can PLWHA use to decrease the likelihood of negative reactions? Why are primary control coping responses not frequently employed by African, Antillean and Surinamese PLWHA? To what extent does
identification with one’s ethnic community impact the experience of stigma? Are the results of these studies also
applicable to other ethnic groups or vulnerable populations? How are the experiences of PLWHA similar or different from the experiences of other stigmatised groups? These and other questions should be the focus on future
research endeavours.
Table 4.1 Recommendations for reducing HIV-related stigma
Create awareness of HIV-related stigma.
Actively work towards breaking taboos on talking about HIV, sexuality and homosexuality.
Increase knowledge of HIV.
Encourage contact between PLWHA and others.
Empower and support PLWHA.
Focus on the specific contexts in which stigma occurs.
Ensure that interventions are theory and evidence-based and that communities are involved.
Promote collaboration.
Keep learning and improving efforts.
In short, there is a lot of work to be done if HIV-related stigma is to be effectively reduced. We need to tackle the
various manifestations from various perspectives and in various contexts. We need to keep learning and improving efforts together. Most importantly, we need to give HIV a human face.
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Acknowledgements
This project would not have been possible without the help, support, effort and cooperation of a number of
people and organisations. First and foremost, we thank the Dutch AIDS Fonds and Abbott for financing this
project (grant 2006092). In particular, we thank Ronald Berends, Wiebe van der Woude and Ton Coenen. We
also thank all the members of project committee: Ronald Brands from the Dutch HIV Association and STI AIDS
Netherlands, Iris Shiripinda from STI AIDS Netherlands, Maartje Liebregts from the Dutch HIV Association and
Nicole van Kesteren from the Quality of Life Department at TNO. Ronald Brands, thanks for making this fight your
fight; Iris, you are the Dutch-African queen, thanks for your insight and your scientific contribution to this project;
Maartje, thanks for your interest regardless of where you are at; and Nicole, thanks for your realism about the
time involved in conducting qualitative research. We also thank Robert Hoogendijk for contributing to the recruitment, data processing and analyses of the quantitative study. Thanks also to the Professional Organisation of
HIV Consultants (VCHA) and all the HIV nurses and practitioners who actively recruited participants for this study.
Further, we thank the Dutch HIV Association for distributing the surveys and recruiting participants for the qualitative study. Thanks also to Robert Witlox and Hans Polee. Thanks to Marijn de Bruin at the Department of Social
Sciences, Communication Sciences Section at Wageningen University and Jeannine Nellen at the Department of
Internal Medicine, Division of Infectious Diseases, Tropical Medicine and AIDS and the Centre for Infection and
Immunity Amsterdam (CINIMA) at the University of Amsterdam’s Academic Medical Centre for contributing data
acquired in an earlier study (Dutch AIDS Fonds grant 7004). We also thank the community health services in the
Netherlands (GGD’en) for their patience and for working together with us on this project and the interventions
that will follow: Mariëtte Hamers, Onno de Zwart, Evert van der Veen, Juan Walter, Stefan Cremer and Fetzen
de Groot. Thanks also to all of the interviewers who recruited and collected the data for the qualitative study:
Chantal Rumanzi, Dudly Tijn-a-Kwie, Emmy Markelo, Germain Akkermans, Indira Snip, Iris Shiripinda, Juan Walter,
Elizabeth Njeru, Mikel Haman, Nadia Mijrals, Pamela Matinde, Rubelto Baker and Urmy Macnack. We also thank
the students who transcribed the interviews: Simone Heijnen, Carolien van Wagenberg, Roy van Veldhuizen,
Sanne van Lieshout, Anne van Middelaar, Joyce van Leendert and Danielle Pool. Thanks also to Lori Mees for
her editorial assistance and to Nora Oosting for her contribution to the graphic design of the folders, the survey
and this report. Most importantly, we want to thank those who participated in the PLUS Project by completing a
survey or participating in an interview. Without you, this would not have been possible. We hope that through this
report, your voices will be heard.
73
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Appendix A: Fact sheet for Study I
Settings in which stigma occurs
The most relevant contexts in which stigmatising reactions were experienced are, in descending order, as follows:
1. Media (79.1%*)
2. Gay community (66.7%)
3. Acquaintances from going out and partying (65.4%)
4. Financial services sector (58.4%)
5. Work (52.0%)
6. Sexual partner(s) (51.9%)
7. Leisure activities and hobbies (40.9%)
8. Friends (39.3%)
9. Extended family (39.0%)
10. Immediate family (34.8%)
11. One’s faith community (33.6%)
12. Other PLWHA (32.1%)
13. Dentist (28.8%)
14. Hospital (26.2%)
15. General practitioner (19.2%)
16. School (16.7%)
* Percentages represent the percentage of all people who considered the context relevant to their life.
Manifestations of stigma
The most relevant manifestations of stigma experienced are, in descending order, as follows:
1. Being told to conceal one’s status (54.1%)
2. Blaming (38.2%)
3. Increased physical distance (34.4%)
4. Avoidance (30.9%)
5. Excessive protective or hygienic measures (29.5%)
6. Being told to disclose one’s status (28.8%)
7. Indifference (28.7%)
8. Exclusion from activities (27.3%)
9. Awkward social interaction (19.8%)
10. Overly nice behaviour and exaggerated kindness (19.4%)
11. Aggression (8.6%)
To note: Almost all participants reported having at some point experienced sympathy and social support following disclosure (91.1%).
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Disclosure
Of those who have a partner, 97.9% have informed their partner of their status. Of those whose mother is living,
68.2% have informed her. With respect to fathers, this percentage was 64.7%. Further, 65.0% of the participants had informed most of their extended family and 64.1% most of their friends. For acquaintances and coworkers, the percentages were 31.1% and 28.8%, respectively. For PLWHA, the disclosure dilemma is very real.
Many PLWHA reported being given contradictory advice by the people in their social environment on whether they
should disclose or conceal their HIV status. Also, PLWHA who are more open about their status reported less disclosure concerns.
Consequences of stigma
More perceived HIV-related stigma is related to greater disclosure concerns. More perceived stigma is also
related to lower self esteem and poorer psychological well being.
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Appendix B: Fact sheet for Study II
Perceptions of HIV and PLWHA
A number of perceptions of HIV and PLWHA exist:
1.HIV is highly contagious.
2.PLWHA are dirty.
3.HIV is a very severe disease.
4.PLWHA must be skinny.
5.PLWHA are personally responsible for their infection.
6.HIV is something you get if you are promiscuous.
7. HIV is something you get if you are gay.
These perceptions are exacerbated by taboos on talking about HIV, sexuality and homosexuality.
HIV status disclosure
Because HIV is concealable, PLWHA face the dilemma of whether or not they should disclose. Disclosure patterns vary among PLWHA.
Arguments in favour of disclosure:
1.One trusts the confidant.
2.One needs to share one’s secret with someone.
3.One seeks social and/or financial support.
4.One wants to start a new romantic relationship.
5.One wants to warn against sexual risk taking.
Arguments in favour of concealment:
1.One fears stigmatisation.
2.One has had poor experiences with disclosure in the past.
3.One has observed poor reactions to other PLWHA.
4.One wants to spare others from worrying about him or her.
5.One wants to spare others from stigmatisation by association.
6.One is ashamed of HIV status.
7. One sees no need to share status with others.
Manifestations of stigma
The following negative reactions to HIV status disclosure occur:
1.Avoidance, abandonment, rejection and exclusion
2.Increased physical distance and excessive protective measures
3.Gossip
4.Blaming, disdain and negative remarks
5.Denial and silence
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Consequences of stigma
The social consequences of HIV-related stigma include a decreased social network, increased social isolation
and difficulties starting new relationships, particularly romantic relationships. The psychological consequences of
HIV-related stigma include feelings of pain, sadness, loneliness, anger and frustration in addition to the internalisation of stigma. A health consequence of HIV-related stigma is problematic treatment adherence.
Coping with stigma
Disengagement coping (avoidance) and secondary control engagement coping (attempts to adapt to the situation) are commonly employed while primary control coping (attempts to change the situation) is rarely used.
Disengagement coping responses:
1.Avoiding stigmatising people or situations
2.Increasing identification with other PLWHA and those can provide support
Secondary control engagement coping responses:
1.Seeking distraction by focusing on others, one’s faith, etc.
2.Engaging in cognitive restructuring by attributing stigma to ignorance and disidentifying with one’s HIV infection
3.Accepting that stigma is part of having HIV
Selective disclosure is also a coping response employed.
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Appendix C: Fact sheet for recommendations
1.Create awareness of HIV-related stigma.
2.Actively work towards breaking taboos on talking about HIV, sexuality and homosexuality.
3.Increase knowledge of HIV that is geared to the determinants of stigma (perceived contagiousness, perceived
severity, perceived personal responsibility, associations with norm violating behaviour such as homosexuality
and promiscuity).
4.Encourage contact between PLWHA and others.
5.Empower and support PLWHA.
6.Focus on the specific contexts in which stigma occurs (e.g. media, financial services sector, gay community,
party and dating scene, places of employment and the health care sector).
7. Ensure that interventions are theory and evidence-based and that communities are involved.
8.Promote collaboration between governments, organisations and professionals.
9.Keep learning and improving efforts.
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HIV-Related Stigma in the Netherlands
HIV-Related Stigma in the Netherlands
Sarah E. Stutterheim
Arjan E. R. Bos
Herman P. Schaalma
Stutterheim – Bos – Schaalma
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