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PANCAP SURVEY OF HIVAIDS STIGMA AND DISCRIMINATION IN SIX

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					     PANCAP SURVEY OF HIV/AIDS STIGMA AND
   DISCRIMINATION IN SIX CARIBBEAN COUNTRIES
      (Grenada, Guyana, Nevis, St Kitts, Suriname, Trinidad & Tobago)

                                Volume I


                 RESULTS AND FINDINGS OF SURVEY




                             FINAL REPORT




Submitted by: Heather Royes, Ph.D
September 2007
                                           Table of Contents
                                                                                                             Page
Volume I
Acknowledgment.................................................................................................. iv
Acronyms.............................................................................................................. v
Executive Summary ............................................................................................. vi
A.    Background to Study.................................................................................. 1
B.    Goals and Objectives ................................................................................. 2
C.    Sampling .................................................................................................... 2
D.    General Methodology ................................................................................. 2
      1.     Focus Group Discussions................................................................ 2
      2.     Semi Structured Interviews.............................................................. 3
      3.     Personnel ........................................................................................ 3
      4.     Training ........................................................................................... 4
      5.     Data Collection ................................................................................ 4
      6.     Data Analysis .................................................................................. 4
      7.     Writing of the Report........................................................................ 4
      8.     Constraints to the Study .................................................................. 5
E.    Literature Review ....................................................................................... 6
F.    Regional Results of Key Informants Interviews ........................................ 10
      1.     Introduction.................................................................................... 10
      2.     Findings......................................................................................... 10
             a)         Results of Analysis done on Key Informants Interviews
                        (Regional) General Perceptions of Stigma and
                        Discrimination ..................................................................... 10
             b)         Experiences with Stigma and Discrimination ...................... 11
             c)         AttitudeTowards Infectious Diseases.................................. 12
             d)         Stigma and Discrimination Related to HIV &AIDS .............. 14
             e)         Causes of Stigma and Discrimination ................................. 16
G.    Regional Results of Focus Groups........................................................... 18
H.    Conclusions & Recommendations ........................................................... 23
      1.     Stigma and Discrimination related to HIV/AIDS............................. 23
      2.     Who Are the Main Perpetrators & Victims ..................................... 24
      3.     Health Workers & Schools............................................................. 24
      4.     The Majority of Situations of Abuse ............................................... 24
      5.     Fear of contamination or physical contact ..................................... 25
      6.     Effects of Stigma an Discrimination ............................................... 25
      7.     Success Stories............................................................................. 26

Volume II
Overview Reports from the National Researchers. National Studies Results
Based on National Researchers’ Reports and Focus Groups............................. 27
1.    Guyana.....................................................................................................28
2.    Nevis ........................................................................................................ 40
3.    St Kitts...................................................................................................... 49
4.    Suriname.................................................................................................. 59


                                                                                                                      ii
5.     Trinidad & Tobago.................................................................................... 66
6.     Grenada ................................................................................................... 84
Bibliography ........................................................................................................ 93

Figures & Tables

Figure 1           Causes of discrimination experienced by respondent ................... 11
Figure 2           Which infection would make respondent least uncomfortable? ..... 13
Figure 3           Which infections would cause respondent to feel
                   most comfortable ........................................................................... 13
Figure 4           Which infection would make respondent leave the room............... 14
Figure 5           Perpetrator of discrimination against person with HIV or
                   their relative................................................................................... 15
Figure 6           Nature of stigmatization and discrimination ................................... 16
Figure 7           Respondents’ reaction if they found out they were
                   HIV positive ................................................................................... 17

Table 1            Country of Residence .................................................................... 10
Table 2            Do you think that some groups are more accustomed to
                   Stigmatize and discriminate?......................................................... 12
Table 3            Relationship Between Victims of Discrimination
                   and Respondent ............................................................................ 15

Appendices

Appendix 1 Semi-Structured Questionnaire For Key Informants For
           Assessment Of Stigma And Discrimination In The Caribbean
Appendix 2 Pancap Research Study On HIV/AIDS Related Stigma And
           Discrimination - Guidelines For Focus Group




                                                                                                                     iii
ACKNOWLEDGEMENTS


More than 400 persons participated in this study of Stigma and Discrimination
related to HIV/AIDS in the Caribbean – a sensitive subject. Some were reluctant
at first, but most of them gave willingly of their opinions and their experiences. To
them must go much appreciation for assisting in exploring this previously vague
area of the epidemic. Most of all, appreciation must be given to the participants
from the at-risk and vulnerable groups who gave their most intimate thoughts and
life stories to enlighten this investigation.

The National Researchers and their Teams laboured long and hard, sometimes
late into the night and in strange places, to make this possible. They were:
Maude Bullen McKenzie (Guyana), Lincoln McCarty (St Kitts), Kris Kambala
(Suriname), Dianne Roberts (Grenada), Nicole Slack (Nevis) Sylete Henry
Birckhead (Trinidad & Tobago) and Arshiah Ali (Focus Groups, Trinidad). Some
went even beyond their quota of work to make the results valid and robust.

We must express our gratitude to Dr. Sarah Gordon, Deputy Programme
Manager, PANCAP Coordinating Unit, GFATM Project, who was determined that
this exploratory study be done in order to inform policy makers and national
programmes, as well as to Mr. Edward Emmanuel, Programme Manager,
PANCAP/PCU, who supported the process.

Moji Anderson, Hilda Dakwah, Alexis Fox, Kristin Fox, Senior Statistician/Sir
Arthur Lewis Research Institute, UWI, Mona and Dion Hinds worked assiduously
through the various results from the countries, and had to standardize and code
before entering and analyzing.


Heather Royes, Ph.D
Lead Researcher
September 30, 2007.




                                                                                   iv
ACRONYMS


ART           Antiretroviral Treatment
ARV           Antiretroviral
CAREC         Caribbean Epidemiology Center
CARICOM       Caribbean Community and Common Market
CBO           Community Based Organizations
CCM           Country Coordination Mechanism
CHRC          Caribbean Health Research Council
CRN+          Caribbean Regional Network of People Living with HIV/AIDS
CSO           Civil Society Organization
CSW           Commercial Sex Worker
DfID          Department for International Development
FBO           Faith Based Organizations
GFATM or GF   Global Fund to Fight AIDS, TB, and Malaria
GTT           Global Task Team
IDB           Inter-American Development Bank
M&E           Monitoring and Evaluation
MAP           Multi-Country HIV/AIDS Program
MOH           Ministry of Health
MSM           Men who have Sex with Men
NAC           National HIV/AIDS Council or Commission
NAS/NAD       National HIV/AIDS Secretariat or Directorate
NGO           Non-Governmental Organization
NSP           National Strategic Plan
OECS          Organization of Eastern Caribbean States
PAHO          Pan American Health Organization
PANCAP        The Pan Caribbean Partnership Against HIV/AIDS
PCU           Project Coordination Unit
PEPFAR        US President’s Emergency Plan for AIDS Relief
PLWHA         People Living with HIV/AIDS
PPS           Pharmaceutical Procurement Services
STI           Sexually Transmitted Infection
TWG           Technical Working Group
UNAIDS        Joint United Nations Programme on HIV/AIDS
UNDP          United Nations Development Program
UWI           University of West Indies
WB            World Bank
WHO/PAHO      World Health Organization/Pan American Health Organization




                                                                           v
EXECUTIVE SUMARY


This exploratory study was based on a survey of six countries in the
Caribbean (Nevis was categorised as a separate health authority). They were
chosen at random by CARICOM/PANCAP/PCU based on three categories of
small, medium and large population, and also coincidentally, represented various
rates of HIV transmission, and evidence of the epidemic.

The main aim of the study was to identify the root causes of Stigma and
Discrimination related to HIV/AIDS in the Caribbean. The study also sought
to, identify the perpetrators, victims, types of situations, perceived notions of the
epidemic and investigations into avoidant behaviour towards PLWHAS and to
find the successes, however small or unrecognized, in this area so that they can
inform future interventions.

This study was conducted with the objectives to reduce S and D in the
Caribbean, to encourage testing, professional and informed counseling, and
improve treatment and prevention. Finally and most importantly, this work would
meet the critical need to inform national programmes and regional groups
designing interventions in S and D so that they could have more detailed
information about what was the realistic situation.

The methodology selected consisted of: a semi structured questionnaire for
Key Informants/KIs who included “gatekeepers” to vulnerable groups as well as
members of various priority groups and the general public; and focus groups/FGs
among PLWHAS, MSMs, CSWs, adolescents and groups that represented the
general public. These qualitative methods were selected in view of previous work
done in other countries which concluded that “the principal underlying causes of
HIV and AIDS Stigma and Discrimination derive from practical moral, economic,
cultural, and political dimensions of people’s lives…” (“Understanding HIV and
AIDS-related Stigma and Discrimination in Vietnam” ICRW, Washington DC,
Institute for Social Development Studies, Hanoi, 2004).

National Sampling consisted of each country choosing two or three other groups
that might be relevant to the study in order to provide a representative sample of
the population e.g. taxi drivers, beach boys, transvestites. In total the results
were based on 140 semi structured questionnaires and 48 focus groups with an
average of six participants. Thus, the total number of respondents was an
estimated 428 persons.

It should be noted that the questionnaires and focus group guidelines were
drafted and re-drafted by the Lead Researcher and PANCAP/PCU (Dr Sarah
Gordon), and finalized with adjustments and approval by the National
Researchers (chosen by each country’s National Programme) and their Teams in
an intensive training session at CARICOM in Guyana March 6-9, 2007. The


                                                                                   vi
main variables and intervening variables were validated by a literature review
which revealed that studies of Stigma and Discrimination in other regions of the
world have some commonalities. But they were often based on culturally specific
factors and causes underlying the phenomena according to that country or even
that town or village. The fieldwork took place between June and August 2007.

The results of the survey indicated that although some of the Key Informants
understood the concept of S & D, a significant number of respondents from both
groups and especially, the focus groups, had problems and confusion
understanding what the terminology meant. In particular, Stigma seemed to
confuse them most, and in one country was not understood altogether. There
was also some uncertainty concerning Discrimination in the overall sample. On
the other hand, views on Discrimination in general were extensively expressed
and clearly internalized in a region which has for centuries used these factors to
organize their populations. These personal opinions were based on:
Racial/Ethnic, Social Class, Economic Status (rich and poor) and Religion in that
order.

Participants from the vulnerable groups (representing about 30% of sample) such
as PLWHAS, MSMs and CSWs had a good understanding of the overall
terminology as well as the epidemic. They were able to recount in detail the main
perpetrators, victims and situations, as well as the effects on victims. But
generally, S and D related to HIV/AIDS is not well understood in the Caribbean
among the general public and represents an abstract concept, except to those
who have had intimate experiences of them.

According to the results, 84% of the KI respondents knew of incidents of S and
D, and this was substantiated by the FGs .The main perpetrators of S and D
related to HIV/AIDS were: (1) family , (2) close community, (2) someone known
to the victim, (3) certain health workers, (4) school environment, (5) the work
place, (6) youth and (7) general public – in that order. Interestingly, adolescent
boys were amongst the strongest abusers according to the focus groups. This is
reflected in a recent Behaviour Surveillance Study in the OECS countries (FHI
and CAREC, 2006). The main victims were, as to be expected, PLWHAS and
their families. Due to the perceived relationship of the epidemic between
HIV/AIDS and MSMs, CSWs and vulnerable groups, there were also accounts of
discrimination and abuse against these groups by similar perpetrators and by the
police based on their sub-cultures and legal status de facto if not de jure. The
main types of S and D were: (1) verbal abuse (2) other forms of abuse (eg.
stoning,) (3) avoidant behaviour, (4) exclusion from social interaction and
employment, and even from religious communities), and (5) threats of
arrest/police harassment and deportation. .




                                                                               vii
The survey documented participants’ in both KIs and FGs, often vehement overt
opinions concerning the need to treat PLWHAS appropriately, and with love and
care. Probing questions however, such as those related to “Avoidant Behaviour”
revealed that there was strong resistance among a significant number of
persons towards physical contact with those infected. This came out
especially in the focus groups. In some cases, they requested that PLWHAS be
isolated, “put on an Island”, use different kitchen utensils in the family and even
excluded from mainstream Health Services, as well as named and reported to
the authorities. The fear of contagion, physical contamination combined with
“shame and blame” were strong undercurrents in the results. There was some
indication that these were based on moral judgments but except for one or two
groups, this was not overtly stated. Avoidant Behaviour was particularly
emphasized in relation to the purchasing or handling of food by PLWHAS (also in
Jamaican KABP/MOH 2004) and close contact with those who appeared to have
overt symptoms of HIV/AIDS, in particular rashes, sores and obvious
symptomatic illnesses. It was important to note that when combined with other
diseases such as Tubercolosis, Leprosy, Malaria , Tubercolosis far surpassed
HIV/AIDS as the illness that would cause most concern regarding close
contact and would cause most unease (“would leave the room”).

The main effects of testing HIV positive, or of knowing someone who did,
and the ensuing S and D were perceived to be: mental and emotional
trauma, including depression, confusion, anger, suicide, shame and
consideration of suicide, killing someone – in that order. There was a significant
measure/result of unknown and this could be interpreted as subconscious desire
for revenge, violence or malice against those who had been affected. Much of
the responses of all groups were emotional and dealt with psychological stages
of acceptance or denial. The role or reaction of the family, partner or friends was
critical in this situation. Often, infected persons had to “bump into” an NGO or an
activist who would assist in the psychosocial support and also introduce them to
support groups who took the place of families that had rejected them.

The most effective organizations or persons who had assisted in reducing S
and D, according to the respondents, were: specifically named, individual health
care workers, NGO advocates, persons within the vulnerable communities who
had done voluntary work. Generally, it was a named individual rather than a
formal organization, except for some NGOs, such as Maxi Linder in Suriname
and CARE in Trinidad. In one country, a well known activist against S and D who
had refused treatment, had just died of AIDS (May 2007). This affected the
vulnerable groups severely, and they blamed his premature death largely on the
S and D shown by the health sector.




                                                                               viii
Recommendations given by the survey included mainly: education and
legislation or policy. But this result was somewhat confusing since there were no
specifics. Some focus groups requested that information on HIV and AIDS be
more detailed, more positive, less related to death and suffering, and explain to
the families and audiences the various stages of the illness, and how it could be
treated so that those infected could lead a healthy and normal life.

Throughout this survey, there were references to the image of HIV and AIDS
through the media as being linked to the Morgue, Skeletons, the Grim Reaper
and Suffering and Death. Thus, they said that this had permeated many people’s
perception of the disease and fueled the S and D. There was also reference to
the image promoted by the entertainment industry, especially the Dance Hall
Sector, against AIDS and those groups who “spread AIDS” i.e. MSMs. Also, the
perceptions of HIV and AIDS that had initially been promoted in the prevention
campaigns of some of the countries had actually had a backlash by creating a
virulent type S and D.

In conclusion, it appears from this survey that, although much work has been
done to encourage Advocacy and Awareness among Decision Makers on the
subject, the general public and even persons involved more intimately with the
epidemic, are somewhat confused by the terminology. It appears too abstract
and depersonalized, therefore, they can remain detached from the acts of S and
D, although subconsciously and maybe even consciously, be main perpetrators
or instigators in the scenarios. The gaps between these and implementation,
therefore, will depend on various types of interventions that disaggregate the
phenomena and actualize them within the reality of the people and through the
National Programmes, in targeted and planned strategies.




                                                                               ix
A.    BACKGROUND TO STUDY


The legal framework of the English speaking Caribbean allows for Stigma and
Discrimination against some high risk groups, particularly MSMs and CSWs.
These laws date back to the 19th century. Thus, all of the countries under review
criminalize homosexuals and sex workers, except in Barbados where the laws
prohibiting homosexuality have been removed. Nevertheless, the debate appears
from time to time, even becoming part of political campaigns as in Jamaica, and
allowing a permissive attitude towards discrimination against PLWHAS – since
they have been traditionally been associated with MSMs and CSWs.

Nevertheless, some positive work has been done in most of the countries
through the unions and some employer associations to sensitise their members
to negative effects of discrimination against those who are HIV positive or who
have AIDs. In Jamaica and in Trinidad, workplace policies have been agreed
upon with the encouragement of the ILO, which is also initiating draft legislation
for discrimination in the workplace. PANCAP with support from DFID has
promoted the Champions for Change Initiative, bringing together political
leadership in the region in the first phase to examine these issues. This effort
was followed by several other CFC Regional Consultations with Cultural and
Sports Icons, the Faith Based Organisations and Media Practitioners.

While most countries have advanced in policy and/or legal reform to ensure
universal access to testing, treatment and care, availability and accessibility are
still not ensured despite public declarations to the contrary. Another important
legal issue is the age of consent among adolescents. This is often contradictory
in law and practice, since many young people below whatever the age of consent
may be, are sexually active but can be refused information, services or products
on the pretext of age of consent, leaving them in some cases, at risk and unable
to access the necessary information.

Since 2002, PANCAP has worked with the Canadian HIV/AIDS Legal Network to
assist governments in the region to assess the status of existing legislation and
develop new laws, policies and ethical guidelines, especially against
discrimination at work and in the health care system. In 2003, the Global Fund
approved eight CARICOM proposals including one OECS proposal to bolster its
current law reform efforts by establishing a regional mechanism to ensure human
rights protection for PLWHA (see Appendix1).




                                                                                 1
B.    GOALS & OBJECTIVES

Main Focus of the Study

Research conducted under these terms of reference was mainly qualitative in
nature, providing baseline data on stigma and discrimination among the general
public and PLWHA in the Caribbean, and formative research for further in-depth
studies of stigma as it relates to PLWHA and their unique roles within the
ecologic framework of the AIDS epidemic in the Caribbean.

The problem statement driving the action research proposed here was as
follows: Stigma is one of the primary barriers to accessing prevention, care and
treatment services and directly affect project implementation. The expected
output of the research activity was baseline data that can be applied directly to
the improvement of on-going and future interventions designed to diminish felt
and enacted stigma in the Caribbean.

The main focus of the study would be to explore the manifestation of felt and
enacted HIV-related stigma in the Caribbean context and how it affects HIV-
related health seeking behaviour.

C.    SAMPLING

Countries eligible to benefit from the CARICOM/PANCAP Global Fund grant
were divided into small, medium, and large according to the target population
size (general population 15-49 years of age). Two countries from each grouping
were selected. The countries that were selected for sampling for inclusion in this
research activity were as follows: Belize, Grenada, Guyana, St. Kitts/Nevis,
Trinidad & Tobago, and Suriname. Belize was unable to participate at the last
minute, and Nevis chose to be counted as a separate entity.

D.    GENERAL METHODOLOGY

Stigma has been recognized as a social process, highly subject to response bias
in interview settings and thereby rendering it difficult to measure through
quantitative methods. Therefore, the research project outlined here is qualitative
in nature. Two qualitative techniques were employed to collect the broadest
possible range of data on felt and enacted stigma among various members of the
community. Some basic quantitative data was collected for descriptive purposes.

1.    Focus Group Discussions

Focus Groups were conducted among the following populations:

             PLWHA: Focus Groups were conducted among PLWHA to gather
             information around felt and enacted stigma among the PLWHA


                                                                                2
            community and internalized stigma as it affects utilization of
            prevention, care and treatment services. Focus Groups were
            conducted to theoretical situation; however, 2 Male and 2 Female
            Focus Groups were conducted at a minimum per country, although
            the quota in many cases was exceeded.

            General Population: Focus Groups were conducted with the
            general population to gather information around felt and enacted
            HIV-related stigma among community members in the effort to
            determine the perception of stigma in the Caribbean context.
            Several sub-populations of the general population were selected for
            Focus Groups. These included both adolescent male and female.

2.    Semi-structured Interviews

Semi-structured interviews were conducted among a number of populations:

            PLWHA: Gatekeeper Interviews were conducted prior to the Focus
            Group research to gather important language and concept
            information. In-depth interviews were conducted after the Focus
            Group research among PLWHA to gather further in-depth
            information around felt and enacted stigma among the PLWHA
            community and internalized stigma as it affects utilization of
            prevention, care and treatment services.

            General Population: Interviews were conducted with the general
            population to gather information around felt and enacted HIV-
            related stigma among community members in an effort to
            determine the extent to which Western and African theories of
            stigma fit the Caribbean context. Several sub-populations of the
            general population were selected for semi-structured interviews.

                Youth: Male/Female
                Urban: Male/Female
                Rural: Male/Female

3.    Personnel

The survey process was led by a Consultant who prepared the draft instruments
after a thorough literature review, including a Plan of Analysis, trained the
members of national teams to use the instruments, as well as analysed the
findings of the Focus Group. The national teams were responsible for the data
collection, and consisted of a National Researcher and a team of between three
and five persons, depending on the size of the country.




                                                                             3
4.    Training

A workshop was held to train persons in the use of the instruments, the process
to be used in the analysis of the FGD, to negotiate appropriate measures and
language, and to select the sample. At this workshop, the instruments were pre-
tested. The workshop was attended by the national researcher and one other
member of the national team.

5.    Data Collection

The National Researcher identified the pool from which the sample was culled
and with assistance of the Survey support team member selected the sample.
The National Researcher organized the Focus Group Discussions, and contacted
the persons with whom the Key Informant Interviews were to be conducted to
arrange for the interviews.

6.    Data Analysis

The National Researcher compiled the Focus Group Discussions and forwarded
the summary and the tapes of the FGD to the Lead Consultant. The actual
questionnaires from the Key Informant interviews were also sent to the Lead
Consultant. The Lead Consultant analysed the findings from each country.

7.    Writing of the Report

The Lead Consultant prepared a draft report with seven sections – one for each
country, and a regional report, which was presented to a meeting comprising the
National Researcher, a representative of the National AIDS Commission/
Secretariat, and other key stakeholders from the region. Based on the
comments, the Lead Consultant made the necessary modifications and
submitted the final report to the PCU.

The National Researcher in collaboration with a team, was expected to

      a)     Identify the sampling frame
      b)     Facilitate the selection of the sample.
      c)     Organize and conduct the Focus Group Discussions
      d)     Compile and summarise the Focus Group Discussions
      e)     Organize and oversee the Key Informant Interviews
      f)     Submit the reports and questionnaires to the Lead Consultant in a
             timely manner.




                                                                             4
8.      Constraints to the Study

The main constraints to the study were:
     a)     The prolonged period of time for submissions of country budgets,
            work plans, resubmissions of some, downpayments, delayed
            fieldwork and possibly loss of momentum.

        b)     The problems in some countries of accessing some of the high risk
               groups, especially the MSMs and CSWs, thus, they were either
               never captured separately in some national samples, or had to be
               subsumed in the PLWHAS groups.

        c)     Sex workers were probably the most difficult to find and organize
               into groups since they had work at all hours.

        d)     The uneven standards of submissions, in various formats, although
               the main factors were correct. This meant that the analysts spent
               more time than expected in standardizing and coding results for
               entry and analysis.

        e)     The mass media campaigns that took place prior to the study (due
               to the Cricket World Cup) and during the study,

     Although these appeared to have little effect in biasing the general public’s
     understanding of S and D, there was some reference to “saw it in the
     media…” “it was on TV….”.




                                                                                     5
E.    LITERATURE REVIEW

HIV Related Stigma & Discrimination

HIV/AIDS-related Stigma and Discrimination (HASD) has been called an
epidemic in its own right (Mann 1987) and the “single greatest obstacle to an
effective national response” to the epidemic in the Caribbean (World Bank). The
concept and practice of stigma originated in ancient Greece with the use of bodily
markings to identify socially deviant or inferior members of society (Varas Díaz et
al 2005). In the context of the HIV/AIDS epidemic, HIV-related stigma is
described as “’a process of devaluation’ of people either living with or associated
with HIV and AIDS…Discrimination follows stigma and is the unfair and unjust
treatment of an individual based on his or her real or perceived HIV status”
(UNAIDS 2003).

HASD has been identified and described all over the world, both in national
populations and in ethnic sub-groups. This research has shown its negative
impact on a variety of issues ranging from HIV prevention and testing (Brooks et
al 2005), access to treatment and care (Aggleton 2000), identity (Flowers et al
2006; Hernandez & Torres 2005), disclosure of status (Liu et al 2006; Clark et al
2003), to PLWHA’s (people living with HIV/AIDS) human rights (Aggleton et al
2005). A common thread running through these accounts is HASD’s
reinforcement of the marginalisation of groups considered “social evils” (Hong et
al 2004), although the identity of these groups may differ from country to country
(Aggleton et al 2005). Studies therefore suggest, and indeed demonstrate, the
importance of the cultural context of HASD. That is, as a social, constructed
phenomenon, it may manifest in particular ways due to understandings
embedded within the group under examination. Studies have also shown that
HASD occurs at a variety of levels, including the individual, family, community
and state. Therefore, PLWHA may have to contend with a range of problems,
from feelings of depression and fear, ostracism from family and friends, abuse
from members of their community, to difficulty securing employment because of
discriminatory laws and policies.

Research on HASD in the Caribbean has tended to concentrate more on the
purveyors of stigma than its targets. Studies of the former have explored the
healthcare, academic, social service and religious settings. The majority point to
“sexual stigma” as the driving force behind HASD: that is, greater stigmatisation
of particular groups due to pre-existing prejudices against particular sexual
lifestyles. For example, Norman & Carr (2005; also Norman et al [2006a, 2006b])
found generally high levels of stigmatisation among university students in
Jamaica, and significantly less sympathy for those considered “sex/gender
transgressors” (Carr 2002): male homosexuals and female prostitutes. These
findings were echoed in studies of religious groups in Trinidad & Tobago
(Genrich & Brathwaite 2005), medical students in Barbados (Wickramasuriya
1994), and Jamaican church leaders (Dinall & Bain 1998). Indeed, Dinall & Bain


                                                                                 6
(1998) found that almost half of their informants were either sure or undecided
whether HIV was a punishment from God. The important point about the
reinforcement of marginality through HASD is therefore borne out in the
Caribbean. While the particular groups whose marginality is reinforced by HASD
vary according to country—for example, prostitutes and intravenous drug users
(IDU) in Vietnam (Hong et al 2004)—in the Caribbean, homosexuals and
prostitutes are the primary victims. As Carr (2002), White & Carr (2005) and
Anderson (2007) demonstrate, homophobia in particular is an important driver of
HASD in the Caribbean. Female prostitutes are also the target of particular
opprobrium because they violate notions of culturally appropriate behaviour for
women.

Fear of transmission is also an important component of HASD in the Caribbean.
Just over a third of doctors surveyed in Barbados worried about occupational
exposure, and in general doctors had insufficient knowledge about important
aspects of HIV treatment and care (Massiah et al 2004). As well, the most recent
study on HASD in the Caribbean showed that belief in the myths of HIV
transmission persisted among healthcare and social service providers in
Barbados, Grenada, and Trinidad & Tobago, and that those whose role involved
physical contact were more likely to distance themselves from and condemn
PLWHA (Abell et al 2007).

Carr (2002) and Anderson (2007) focus on the PLWHA’s experiences of stigma.
Anderson (2007) found that PLWHA are fearful: of discovery, onward
transmission, and others’ reactions to their status (including fear of violence,
ostracism). Carr (2002) points to the gendered nature of HASD which has been
noted in other contexts (Hong et al 2004; although not found among Norman et
al’s [2006a] university students): women were found to suffer more under HASD
than men, because of the presumption of promiscuity – culturally unacceptable
behaviour for women. Anderson (2007) found that PLWHA’s access to
healthcare and integration into society may be compromised, due to the
emotional and psychological strain of diagnosis and difficulty retaining or
securing employment. A comparison between PLWHA’s experiences in the
Caribbean and in the UK showed that HASD was more severe and overt in the
Caribbean, with instances of violence, verbal abuse, unauthorised disclosure and
employment discrimination (Anderson 2007).

PLWHA were able to evade much HASD through what Anderson (2007) calls
their “stigma avoidance strategies.” The most important of these are limited
disclosure, deception, and engaging in casual or doomed relationships or in no
relationships at all. Secrecy then is a key part of living with HIV: PLWHA make
careful decisions on who they tell of their status, based on the degree of trust
they have in an individual to lend support and keep their secret (Carr 2002,
Anderson 2007). Carr (2002) and Anderson (2007) find that religion serves an
important double role: as stigmatiser and as coping aid. One of Genrich &
Brathwaite’s (2005) informants demonstrates this: despite the fact that his pastor



                                                                                7
revealed his status to fellow congregants without permission, he still evinced
strong faith in both God and his church. Anderson (2007) is alone in her finding
that a small minority of informants felt their diagnosis had been a blessing, by
providing them with a sense of greater strength, for having to cope with the
disease, and forcing more responsible behaviour. Nonetheless, they did suffer
some emotional instability, and some complained of loneliness and the difficulties
attendant on maintaining the secrecy of their status.

It is important to take into account the positive, or potentially positive, findings
revealed by these studies. Massiah et al (2004) reported that those doctors who
had graduated after 1984 had more favourable attitudes towards their HIV-
positive patients, and that overall most Barbadian doctors said they were
comfortable caring for PLWHA. Genrich & Brathwaite (2005) noted religious
groups’ general compassion for HIV-affected individuals. Norman & Carr (2005)
found that most of the university students they surveyed in Jamaica believed that
HIV-positive teachers and children should be allowed to work at and go to school
respectively. Most of the students also claimed that they would not ostracise an
HIV-positive family member or friend; this “non-avoidance” was associated with
sympathy, HIV knowledge, education and awareness (Norman et al 2006b).
These results serve both as encouragement for those trying to reduce HASD in
the Caribbean, and as signposts to avenues to pursue in further work: as well as
the very necessary policy formulation at the national and institutional level, work
must be done at the individual and group levels on education (within and outside
academia) and public health promotion.

The research detailed in the following pages eschews a medical approach to
exploration of HASD. Experience has shown that a purely medical research and
prevention strategy is insufficient for the complex, multifaceted phenomenon that
is the HIV/AIDS epidemic (UNESCO 2001). As a consequence, this research
uses the “cultural approach” recommended by the United Nations Educational,
Scientific and Cultural Organisation (UNESCO). In 1998, the joint
UNESCO/UNAIDS project, A Cultural Approach to HIV/AIDS Prevention and
Care, was launched in recognition of the importance of culture to all aspects of
HIV/AIDS. As UNESCO states, culture must be used as a key reference in
elaborating strategies and planning, because “culture influences attitudes and
behaviours related to the HIV/AIDS epidemic: in taking or not taking [the] risk of
contracting HIV, in accessing treatment and care…in being supportive towards or
discriminating against people living with HIV/AIDS and their families” (UNESCO
2007; emphasis added). This literature review has demonstrated this last point
quite clearly: ideas about who constitute “sex/gender transgressors” are rooted in
culturally based ideas about sexuality and gender. As well, efforts to deal
effectively with HASD, as well as the epidemic itself, stumble in the face of the
taboos against these “transgressors,” and in some cases, against discussing
issues of sexuality in general. This research incorporates two of the three main




                                                                                  8
components of the cultural approach: (1) research, and (2) thematic work on
stigma and discrimination.1

Additionally, this research is an important addition to the burgeoning literature for
its cultural focus, cross-country breadth and its component focusing on the
targets of stigma and discrimination. Ultimately, it aims to confirm UNESCO’s
(2001) claim that only work that takes the cultural into full consideration will
succeed in achieving long term and in-depth behaviour change (UNESCO 2001).




1
    The third component is the use of arts and creativity.


                                                                                   9
F.    REGIONAL RESULTS OF KEY INFORMANT INTERVIEWS

1.    Introduction

As part of a project to examine the issue of Stigma and Discrimination against
HIV/AIDS in the Caribbean, a survey was undertaken in six countries. This
report details the findings of the semi-structured questionnaires that were
administered in each country to gatekeepers, persons who had access to high
risk groups and to members of the general public. A total of 140 questionnaires
were completed. Most respondents were from Guyana ,Trinidad and Suriname
which were the countries with the largest populations. (Table 1), although the
other countries submitted larger quotas based on their population size.

                                  Table 1
                            Country of residence

                                       Nos.      %

                        Guyana           51     36.4
                        Grenada          11     7.9
                        Nevis            15     10.7
                        St. Kitts        11     7.9
                        Trinidad        27     19.3
                        Suriname         25     17.9
                        Total           140    100.0




2.    Findings

a)    Results of Analyses done on Key Informants Interviews (Regional)
      General Perceptions of Stigma and Discrimination

             Stigma

      It was generally found that people had an idea of the meaning of stigma.
      However, there were some persons who were not as aware or who were
      misinformed or confused. Some of the responses of informed respondents
      are as follows:-

      -      An adverse label given to a person
      -      Something somebody doesn’t want to be associated with
      -      Negative result from a perceived flaw
      -      Putting a stain upon someone’s reputation

      Below are a few of the respondents who have misunderstood the term
      stigma.


                                                                            10
      -             The person has bad ways or illness
      -             To stimulate
      -             Outward expression of what is in one’s mind

      A detailed list of the various responses can be found in the Appendix 1.

                    Discrimination

      Generally, most persons had an idea of what discrimination was.
      However, the responses tended to be imprecise. See Appendix 2 for
      complete listing of definitions by respondents.

b)    Experiences with Stigma and Discrimination

The majority of the respondents (71%) reported they had experienced
discrimination generally. The remaining 28.1% said that they had not
experienced discrimination. In addition, 42% of the respondents reported that the
cause of the discrimination they experienced was due to ethnic or racial factors.
Note, however, that most of the sample (77) persons were from Guyana and
Trinidad where there is a sharp racial divide. Only 3% reported that the cause of
the discrimination they experiences was related to their health status (Figure 1).

                                                       Figure 1

                              Cause of discrimination experienced
                                                   by respondents
                    50



                    40                            42



                    30
          percent




                    20                                                                              23
                                                                      19

                                                             13
                    10
                              10
                                         9                                     9

                     0                                                                  3
                         Family Issues       Ethnic/racial   Class/social status   Health status
                                    Religion            Nationality        Education               Other




                                                                                                           11
It was found that the three main causes of discrimination experienced by
respondents were ethnic or racially related, the ‘other’ category and class or
social status respectively. The “other” category included political
influences/associations, sexual, appearances, lack of self-esteem, lifestyle, being
HIV positive or working in the area of HIV/AIDS

Just over half of the respondents reported that they actually have been
stigmatized or branded negatively. This was 56.5% of the sample population.
While the remainder stated that they have not been stigmatized or branded
negatively.

Based on the Table 2 presented below, it is evident that the majority of the
respondents held the view that some groups are accustomed to stigmatize and
discriminate and 16% did not. There might have been some misunderstanding by
respondents as the follow-up question which is “Which groups are more
accustomed to stigmatize and discriminate?” was interpreted by some persons
to be who were the persons who actually did the discriminating and
stigmatization and interpreted by others as who were the persons who were
actually being discriminated and stigmatized against. Evidence of this can be
seen in Appendix 3.


                                   Table 2
            Do you think that some groups are more accustomed
                       to stigmatize and discriminate?


                                       Frequency      Percent
                   Yes                    105           84.0
                   No                      20           16.0
                   Total                  125          100.0


c)   Attitude towards infectious diseases

Based on statistics gathered, the majority of the respondents (59%) reported that
HIV would make them least uncomfortable. However, only 10% felt this way
about AIDS. Some 23% stated that malaria would make them least
uncomfortable (Figure 2).




                                                                                12
                                                     Figure 2

                                  Which infection would make respondent
                                              least uncomfortable
                            70


                            60
                                                        59

                            50
                  Percent



                            40


                            30


                            20              23


                            10
                                                                  10

                             0                                               4
                                    TB    Malaria       HIV      AIDS     Leprosy   none




The infection that respondents said would cause them to feel most uncomfortable
was the Tuberculosis infection. The next in line was leprosy which less than half
of the percentage for the tuberculosis disease (Figure 3).


                                                     Figure 3
                                 Which infections would cause respondent to feel
                                                    most uncomfortable
                            70


                            60     64


                            50
               Percent




                            40


                            30

                                                                             25
                            20


                            10

                            0                                         6
                                   TB     Malaria       HIV      AIDS     Leprosy   none


                                                          Infection




                                                                                           13
As is evident from Figure 4, the vast majority of respondents in this sample
population reported that someone who has tuberculosis infection is the main
infection that would cause them to leave the room where the person is located.
This finding is pertinent due to the relationship between HIV/AIDS and
Tuberculosis, as a symptomatic disease. Whether or not the respondents
realized the connection between the two is not captured in this study, but would
be relevant for future work.

                                       Figure 4


                         Which infection would make respondent
                                      leave the room
                    80


                            70
                    60
          Percent




                    40




                    20

                                                          16

                    0                          6                   6
                            TB    Malaria     AIDS      Leprosy   none


                                            Infection


d)    Stigma and Discrimination Related to HIV and AIDS

Most of the respondents (80.6%) reported that they have witnessed or heard of
some form of discrimination against people living with HIV/AIDS and 19.4%
reported otherwise. The main perpetrators of discrimination were family
members, the community or friends. However, people also reported that
institutions such as the workplace and the health sector were guilty of
discrimination (Figure 5). The large group, other as perpetrators could possibly
be police and figures of authority.




                                                                             14
                                                 Figure 5


                   Perpetrator of discrimination against person
                                        with HIV or their relative
              50




              40
                        39
          %




              30                            31
                                   28                                    27                28

                                                      23
              20


                                                                                   15
                                                                 14
              10
                   family member         community           school            stranger
                               friend            health sector        w orkplace          other



Most respondents reported that the victim of discrimination in cases known to
them were persons who they were familiar with (Table 3). This is worrying in view
of the need for victims to have support and sympathy from those around them.
Whether this group of “someone known to you“ is a partner, significant other or
casual partner is not known.

                                  Table 3
       Relationship between victim of discrimination and respondent

                                                           Frequency               Percent

          family member                                          20                  20.2
           friend                                                22                 22.2
           someone known to you                                  41                 41.4
           a stranger                                            16                 16.2
           Total                                                 99                 100.0


The main types of discrimination that respondents reported that the victims
underwent were verbal, acts of exclusion and difference in treatment
respectively, with verbal discrimination being the highest (Figure 6). Different
treatment could include avoidant behaviour or passive-aggressive treatment
which is difficult to describe for many.


                                                                                                  15
                                          Figure 6


                 Nature of the Stigmatization and Discrimination
.                50

                       46

                 40
                                                                        38


                 30
                                                                                     28
             %




                 20
                                              20



                 10              11                         12



                 0
                      verbal          removal of services        acts of exclusion
                               physical                non-verbal            different treatment



Some two-thirds of the respondents (66.9%) were aware of how the
stigmatization or discrimination affected the victim they knew.

Suggestions of ways of avoiding or preventing discrimination or stigmatization
can be found in Appendix 4. However, the main ones included – education,
workplace policies, outreach programmes with emphasis on caring attitudes.

e)    Causes of Stigma and Discrimination

Many causes/reasons for stigma related to HIV/AIDS were given – the main ones
being lack of education/knowledge, the mode of transmission and the nature of
the disease. See Appendix 5 for details.

There were several responses to the question regarding the main
reasons/causes for discrimination related to HIV and AIDS. A detailed list may be
viewed in Appendix 6. But all reflected mental and emotional trauma that needs
to be configured into the treatment of PLWHAS and their families, not on a one-
off counseling or occasionally support group, but including qualified psychologists
and psychiatrists, who so far, have not played a role in the epidemic despite the
need. There were quite a few of organizations that respondents felt have been
most active and successful in helping to reduce stigma and discrimination
(Appendix 7).




                                                                                                   16
Most respondents reported that they would respond in some other ways than
what was listed. The response next to the ‘other ‘category was found to be
depressed. 29% of these respondents reported that if they found out they were
HIV positive they would be depressed.      The ‘other’ category comprised
responses such as the ones below:-

              Surprised/shocked
              In denial
              Revengeful
              Acceptance
              Disappointed
              Advocate
              Ensure good quality of life
              Get medication
              Dumbfounded
              Appalled

                                                 Figure 7

                           Respondents reaction if they found out
                                        they were HIV positive
                      60


                      50                                                               51


                      40
            Percent




                      30
                                      29
                                                                       25
                      20    21

                                                                               15
                      10                                   12
                                                 10

                      0
                           Angry               Suicidal            Confused           Other
                                   Depressed          No differently          Shame



The vast majority (83%) of the sample population reported that if they found out
that they were HIV positive they would let someone know. Persons identified who
were common across countries were children, spouse/partner.




                                                                                              17
G.    REGIONAL RESULTS OF FOCUS GROUPS

Focus groups were held in Trinidad & Tobago, Nevis, Guyana, Grenada, St Kitts
and Suriname with the main questions from the guidelines related to the meaning
of stigma and discrimination, who are the main perpetrators, the victims, the
situations of stigma and discrimination, the effects, and the treatment of
PLWHAS. In general, the responses to these questions were similar albeit with
differences or intensity depending on the culture, and to a certain extent the size
of each country. It was generally concluded from this and other investigations,
that the smaller the population, the more conservative and the more difficult to
maintain confidentiality. It was also easier in the larger countries to gain access
and trust from the at risk groups in order to get them to participate.

The total sample of the focus groups included a wide range of representatives
from the general public and from the risk groups, including PLWHAS: Many
countries were unable to access the high risk groups, but subsumed them in the
PLWHAS groups.

             Adolescents (male and female)
             Private and pubic sector managers
             Prisoners
             PLWHAS
             Transvestites
             Affected children
             MSM
             Sex workers
             Taxi drivers
             Construction workers
             Women workers for manual work/public works.

Altogether, there were 48 focus groups with a conservative average of 6
participants per session. Thus, the focus groups yielded 288 results to the
queries based on the guidelines. Many responses supported the findings of the
KI questionnaires and gave more detail and substance to the results, especially
regarding the local or national situation.

      Generally, there was some confusion about the meaning of stigma
      and discrimination with varied responses to the question. Stigma in
      particular, seemed to give most persons problems to interpret. In
      Suriname, despite translation and prompting, it was not understood by any
      group though sometimes referred to as “heard it on the radio…saw it on
      TV…”.. Discrimination, on the other hand, was an “old friend”, with many
      people referring to racial and social discrimination in the Caribbean, and
      giving vivid descriptions of situations they had either seen or had
      experienced themselves. It was usually some traumatic act or situation
      that was important and had made an indelible mark on their memory.


                                                                                18
  “I knew of a counselor. She was a social worker. She had her
  MA. I thought she would be smarter than most. I confided in her
  about my problems, I work in an MSM HIV organization and it is
  not just work. She listened and was very empathetic. Her first
  question is you sick? I replied no and she did not counsel me,
  she said that she always wondered what she will do if someone
  like you came into my office. She brought out the bible etc. It
  was the most dehumanizing experience I ever had it was not if
  she was reading to me, she actually turn the bible around and
  look here and read it aloud, and God I really felt like shit.”

There were commonalities in response to the treatment of PLWHAS
and the effects on them and their families. A striking result throughout –
except among the high risk groups – was the issue of not wishing to
accept or buy food from someone who was a PLWHA. But it was clear
that in Suriname, there was a much more accepting and supportive
attitude probably due to cultural environment and to the legal and policy
frameworks.

Interesting to note was the much higher unease with the physical
presence of someone with tubercolusis than someone who was HIV
positive, indicating how deep the cultural taboos go in framing behaviour
and beliefs.

The perpetrators of stigma and discrimination ranged from the police,
medical personnel, the church, general public but mostly, family
members and those “known to them”..

In Nevis it was noted that discrimination against PLWHAS was particularly
high where the police felt they should have knowledge/identification of all
PLWHAS in the country and among Construction Workers who were
adamant that PLWHAS should not be given the same Health Care as
other persons. It was interesting to note that the focus groups of
Guyanese workers in Nevis were sympathetic to PLWHAS, but adamant
that they should be isolated or put on an Island. The focus group with
Police in Nevis were also emphatic in knowing “the persons who were
infected on the Island.” In St. Kitt’s, a policeman wanted to know the
identity of all those who were HIV positive. This has serious implications
for their personal privacy as well as their accessing medical services as
previously noted. Generally speaking, these two groups were the most
conservative and spoke of isolating PLWHAS on to islands, not trusting
them and giving them health care “depending on how the disease was
contracted”. It is possible that the smaller the population, the more
perilous is the trust and confidentiality.




                                                                        19
Of all the groups interviewed in all countries, PLWHAS and at risk groups
were more articulate on the meaning of stigma and discrimination,
describing it as “the presence of inequity, not having the right to live,
denied benefits and ostracised by society”. They all recounted personal
experiences of being denied their human rights and having to deal with the
many challenges they had to face.            For example, some of their
experiences were from the medical profession where they have been
treated poorly by doctors and nurses.

  “I had an experiene with going to the dentist…Before we start
  anything I said that I was HIV positive. The dentist start to make
  all kind of excuse. That she can’t do it, she couldn’t see about
  me and that she could make a referral to see somebody else. Up
  until the time I went to see her and I didn’t say anything, it was
  fine. But the time I told her I was HIV positive, she came up with
  all kind of excuse. That in my mind is discrimination.”

PLWHAS demanded respect and love just like everybody else, and
recommended and suggested that protection under the law would go a far
way in reducing stigma an discrimination as it hurts not only the PLWA but
also their families who can come under severe mental, physical and
emotional strain when it is revealed that a family members has HIV/AIDS.

  “I knew, a family member who couldn’t cope with it, they
  removed their dishes from their brother, but they knew that they
  could not catch it, but that’s how they felt, because they knew
  they themselves would be discriminated by their co-workers,
  knowing your brother has it, and they just went aside”.

Probably the most articulate group was the transvestites in Trinidad who
were more familiar with the HIV/AIDS epidemic than most, and could
relate the whole gamut of S and D in great detail, including their rights and
the rights of PLWHAS with whom they had a close affinity.

The effects of Stigma and Discrimination first and foremost, were mental
and emotional illnesses that needed immediate attention, and that no
doubt will become increasingly important due to the longevity of PLWHAS
and the various stages of the illnesses that they and their families go
through.

Although Education concerning the epidemic and Legislation were
recommendations that were most popular among the respondents, there
were not much details; although some informed groups did suggest
targeting the most extreme perpetrators, rather than paying for large,
mass media campaigns.




                                                                          20
  “I know how it feel. I wanted to beat the daylight out of my own.
  I was stunned when the doctor told me. All I wanted to do was
  take the umbrella and beat him up. If they had stick me with a
  pin blood would not run. I am not a violent person.”

  “Because I remember the first time I found out I was HIV
  positive, I couldn’t deal with it I was in a state, and my doctor
  referred me to go there and I didn’t want to go, but my sisters
  and nieces and nephews went with me and I wanted to jump in
  front a moving truck look for minor blades and slit wrists”

Examples of avoidant behaviour was particularly vivid among the focus
groups where victims of S & D gave emotionally charged descriptions of
being turned out of the family home or abused by particular groups.

  “I would not totally agree with having to be rich. Even if you are
  rich it still doesn’t (say you are going to be happy. You still have
  to go through the bigotry and prejudice. (Shaking head in
  negative emphasis) I would say boys. There are grown boys,
  there are middle aged boys. Grown boys who are immature,
  ignorant and childish etc. The group boys is vast. We have
  women who feel threatened. Boys, basically boys. Savannah
  was quite right in saying that if you want to go racially, the negro
  tend to S and D more than the Indian race.” (Transvestites)

  “I agree with everyone.        But will target the faith-based
  organizations. They will use Sodom and Gomorrah and draw
  references as to why they were destroyed. They will then use
  this as a catalyst as an abrogation as to where it come from.
  They use this as a niche to put people. If you are HIV positive, it
  is because you were promiscuous, you were doing something
  wrong. I worked up.”

Recommendations strongly included education and legal reform.
Throughout the Focus Groups people suggested strongly the need for
detailed information on HIV/AIDS as well as what were the effects of S &
D The PLWHAS and high risk groups were particularly upset about the
types of information that are perpetuating on the media.

  “When we say to educate. Who do you educate? The most
  stupid people where HIV is concerned is the educated people.
  The first picture on TV is a skeleton, you dead. To this day there
  is an advertisement – ‘and my husband brought home AIDS to
  us and I am not going to live to see my children grow up.’ This
  woman says she is going to die. And they are still giving us the




                                                                         21
         ARVS. The Government           has   to   revisit   this   type   of
         advertisement.”

Generally, the result of the focus group discussions supported the results of the
KIs, except they gave greater detail and depth to the results. Due to the hard
work undertaken by the National Researchers and their Teams, the Study was
enlightened by the often dramatic accounts of Stigma and Discrimination related
to HIV/AIDS, in particular to PLWHAS, and by extension to the high risk groups
who become victims due to the perception of the epidemic. Finally, there was
the cognitive dissonance displayed by a significant proportion of respondents
who, although claiming sympathy for those infected, then continued to be
vehemently demanding their isolation and/or discriminatory treatment. This
social schizophrenia is not uncommon in a region that is divided by race, social
status, religion and economic situations.




                                                                                22
H.     CONCLUSIONS AND RECOMMENDATIONS

Stigma and Discrimination are historically and inextricably part of the Caribbean
culture. Plantation systems, indentured labour, waves of imported labourers and
migrants were arranged according to a hierarchical structure that allowed order
and exclusion. These factors were used to exclude some groups and order the
colonies. The roots of Stigma and Discrimination, therefore, are deep within the
Caribbean psyche. Although related now to other factors, according to the study,
as well as race, ethnicity, colour, economic status, politics and even religion, they
still provide another challenge by including HIV and AIDS as “a circle of fire” that
surrounds others who are more inferior.

It is not surprising, therefore, that S and D related to HIV/AIDS, (and indirectly to
the high risk groups), provide yet another barrier to exclude, and to enhance
those who wish to be considered superior, or whose own insecurity stimulates
needs to exclude. This is not the first time that a disease has been used in this
way. Leprosy and Tuberculosis were also used for Stigma and discrimination in
previous times. To this day, the now deserted leper colony, Chacachacare,
operated by Dominican nuns on the island off of Trinidad in the 19th century,
remains uninhabited despite its beauty and potential due to the stigma of its past.
Customs such as marking eating utensils for members of the family who had TB
and placing them separately in the sun were common, and even used when
cancer was first diagnosed.

1.     Stigma and Discrimination related to HIV/AIDS: What does it mean?

Among the total respondents, there was some confusion regarding the meaning
of S and D. Thus, separating them and probing questions regarding these factors
brought out more useful information. There is little doubt that, although donors
and PANCAP have done effective and successful work in Advocacy and
Awareness among high level decision makers, the general public do not fully
understand what it means, and that is where the challenge will be.

Recommendation

This abstract concept should be broken down into more realistic language and
images, using examples, testimonials and real life experiences. Stressing the
negative results of S and D would also help.

There is a need to present more positive images of the illness and its effects.
Just like other illnesses that society has grown to accept and cope with. This
would make the PLWHAS’ lives much improved and their quality of life better, as
well as those of their families.

It would also assist those who need care and treatment with information in order
to recognize the signs of S and D, and to cope more proactively with abuse.


                                                                                  23
2.     Who are the main Perpetrators and Victims?

It is clear that family, close communities and “persons known to them”
(partners?) are the main perpetrators. This should be addressed vigourously with
more psychosocial support to both the affected and the infected. Consistent
Counseling of high quality and long term counseling is needed, as well as
support groups for the families.

Projects regarding schools and workplace seem to be well underway according
to many agencies in the Caribbean. But targeting of specific groups such as
young boys, for example, who appear to be among the most aggressive abusers
would help. This is across the Caribbean and could have to do with their stage of
development or their sensitivity to their own masculinity.

Recommendation

This is where Strategic Behaviour Change or Modification interventions would be
helpful, based on vertical activities. This was already helpful in the knowledge
building process, but now, if they could be used to actually modify behaviour of
the main perpetrators it would be helpful.

Here, education or support of families and those close to the PLWHAS are
important. Informing them about the details regarding the process of the disease
and the ways in which the person can be assisted, both emotionally and
mentally, would allow a window of opportunity for the perpetrators to “buy in” to a
different and more positive form of behaviour.

3.     Health Workers and Schools

Despite many projects and programmes instilling information into the health
sector, training and retraining, it is surprising that there are still problems there.
But Health care workers are humans. Perhaps, they have some unease, or
judgments that prevent them from dealing with PLWHAS or the high risk groups.

Recommendations

Psychometric tests for such workers would sift out those who could not handle
this area. This should also be done in schools so that those who teach, including
guidance counselors, are the most effective and can build trust.

4.     The majority of situations of abuse consist of verbal abuse, “pelting
stoning”, exclusion of various types and even physical abuse including threats of
arrest by the police. Lack of psychosocial support, employment or schooling,
and most of all, recourse to such abuse, can only increase the trauma and
problems of those infected.




                                                                                   24
Recommendations

These types of expressions of S and D relate to the emotions and intimate
feelings of the perpetrators. They are all culturally grounded and seem to vary
from country to country. For example, the rejection of PLWHAS by some health
care workers may be only in some countries, or the desire from the police or
unions to know who is HIV positive in order to exclude them. Thus, each country
will have to examine their own form/category of S and D in order to effectively
reduce it by targeting correctly and not just “shooting in the dark”.

There is anecdotal evidence that the smaller the country or community, the more
virulent is the S and D, and the less helpful the communities. The larger the
population or country, the PLWHAS have more opportunities to go elsewhere for
treatment or to attend support groups for high risk persons without
condemnation.

5.       Fear of contamination or physical contact: This is not new in public
health issues in this region or in the world. However, it does appear to have
another hidden reason which could be judgmental or moralistic, based on
religious beliefs or social condemnation of a perceived lifestyle e.g. promiscuity,
infidelity, alternative lifestyles, drug abuse.

Recommendations

Information on HIV and AIDS and their transmission needs to be approached in a
different way that will keep the attention of audiences. The chalk and talk
approaches, or the lectures from “experts” have clearly not reduced the fear of
contamination.

6.    Effects of S and D: Most of the effects recorded were emotional and
mental responses. Some may be short termed, but most indicate that they do
experience stages of various types of emotional and mental illnesses throughout
the course of development.

Recommendations

Qualified psychologists and psychiatrists should now be involved increasingly in
the attempts to alleviate S and D and its effects. In view of the longevity of the
PLWHAS, their skills will be increasingly in demand. Thus, specialized training
will be needed.

Assessments of counseling for pre and post testing, treatment and care, should
be reviewed since they now consist of varying degrees of skills and generic
uninformed skills that may be more detrimental than helpful. This is throughout
the public and NGO sectors, churches and schools.



                                                                                25
7.       Success stories


     Those persons who are known to the PLWHAS and the vulnerable groups, and
     who are trusted by them were stated to be the most important and effective in
     reducing S and D. These people should be given special tasks, roles and training
     instead of training and retraining personnel who are either uneasy with the
     epidemic or unable to work with some groups due to personal beliefs.

     NGOs that have worked for years without public commendation and little support
     should be brought into the fold of those who benefit, not just as tokens, but as
     permanent actors. Documentaries and reports on their work should be
     commissioned to show that many people have worked in HIV and AIDS (e.g. Maxi
     Linder) and with PLWHAS without recognition and without “catching it.” Their
     stories will assist in removing the stigma and decreasing the acts of discrimination,
     and will promote the real heroes and heroines and pioneers in the epidemic.

     Probably one of the most successful stories in this region is the role of
     Transvestites in publicly championing prevention and care, and reducing Stigma
     and Discrimination in the Dominican Republic and Brazil. This also occurred in
     Guyana a few years ago with Andre S. who was a much loved media personality
     and a drag queen. Her funeral was attended by many eminent persons and her
     absence mourned. From the articulate reports of the “Trans” in Trinidad who were
     mourning one of their own who had been their “champion”, it would appear that
     there are creative though controversial ways of approaching interventions by using
     persons who are open, attractive and of interest to the audiences.
     Plays, stories and dramas such as those created by the late Godfrey Sealey did
     much to break down the stereotypes of HIV/AIDS. A regional movement or
     competitions to follow this trend would assist greatly in making progress.

     Finally, having had a regional spate of mass media campaigns to stop S and D, it is
     now time that the activities become more targeted and appropriate to each country.
     This should be taken up by the National Programmes, public and private sector,
     and NGOs. Some of the regional implementing agencies could also be useful by
     providing assessments on vertical approaches in order to stem specific
     manifestations of S and D in each country.




                                                                                             26
PANCAP SURVEY OF HIV/AIDS STIGMA AND DISCRIMINATION
           IN SIX CARIBBEAN COUNTRIES



       (Grenada, Guyana, Nevis, St Kitts, Suriname, Trinidad & Tobago)

                                 Volume II




 OVERVIEW REPORTS FROM THE NATIONAL RESEARCHERS

                   National Studies Results Based on
National Researchers’ Reports and Focus Groups




                                                                         27
GUYANA

Introduction

The majority of its peoples live on the coastland, while others occupy the rich
hinterland regions, keeping more or less to the porous borders of the country.
Traffic to and from the neighbouring countries is comparatively free and easy,
thus facilitating various types of alliances for example: social, economic, socio-
economic, driven mainly by their need for employment, and financial
independence. There is a system of decentralized administration, particularly in
the areas of education, and health. There are ten such divisions referred to as
administrative regions, but monitored by the central government - whose seat is
in Georgetown, the capital. These regions are clearly demarcated on the Map of
Guyana.

Guyana, one of CARICOM member states, has been hit by the HIV/AIDS
pandemic. Within the last five years it was said that Guyana has one of the
highest prevalency rates of HIV/AIDS in the Western hemisphere, this is among
persons aged 15 to 49. Multiple efforts have been made by the Government of
Guyana and other non-governmental organizations to curb this spread. Among
them are, the establishment of diagnostic sites, counseling and guidance
facilities; and various attempts to educate and raise the sense of awareness of
the disease and the treatment of persons living with HIV/AIDS. To this end
funding has been received and aggressive work is ongoing.

This survey must be regarded as yet another effort to assess the level at which
the scourge has affected the personal pride and dignity of the nation and some of
the steps that can be taken to reduce stigma and discrimination that might be
experienced by persons living with HIV/AIDS.

THE SAMPLE GROUP

Among the considerations for the selection of the sample were, (i) the fact that
this is an exploratory survey; (ii) the presence of VCT teams in most of the
geographical areas, and (iii) the need for more work to be done in relation to
stigma and discrimination. A discussion with some of the social workers in
Region 10 and the National AIDS Programme Secretariat in Georgetown
informed the selection of the areas and the sample groups. It could therefore be
said that this survey used the opportunist as well as the stratified or purposive
forms of sampling.

In the initial effort to gather data, areas of HIV/AIDS subjects were identified, and
work that was done in the area of stigma and discrimination was highlighted.




                                                                                  28
Key Informants Responses

Country/    Definition of Stigma
Region
Guyana      - Something somebody doesn’t want to be associated with
            - To isolate persons from yourself
            - A particular thing attached to someone
            - Negative information passed on from one person to another about
              an individual that follows them where ever they go
            - When an individual is labeled unjustly
            - The stereotype associated with a particular person or thing
            - To stimulate
            - Negative result from a perceived flaw
            - Putting a stain upon someone’s reputation
            - Positive or negative aspect as it relates to HIV
            - General behaviour pattern
            - How we look at or conceptualize people
             - Negative branding of people
            - Labeling someone
            - Persons calling you names
            - Segregation
            - Taboo
            - Avoidance
            - The person has bad ways or illness
            - Fear of a situation not knowing the truth
            - To keep away from an individual
            - Something that is said that marks the individual that is unworthy
            - Curse, shame
            -Dislike of something, negative thoughts
            - Elements of disgrace
            - Dogmatic view or opinion of others
            - A bias against any trait, disease
            - categorizing persons
            - Stain on character
            - An adverse label given to a person
            - A person looked upon differently




                                                                            29
Country/     What is understood by Discrimination
Region
Guyana       - Unfairness
             - As a result of stigma; to look upon someone as an outcast or not on
               my level
             - Public embarrassment
             - Depriving one of some benefit that he/she is qualified for because of
               gender, orientation, ethnicity, political affiliation
             - When individuals are deprived of opportunities as a result of stigma
             - treating people differently because you have a preconceived notion
               about them
             - Race is a problem. Prejudice against race, colour, creed, religion
              etc.
             - Denial of rights and entitlements coming out of a persons status or
               lack thereof
             - Relates to behaviour pattern whether negative or positive
             - Dislike, denial of an opportunity even though qualified
             - How we perceive people with whom we interact
             - Because of branding person is treated badly
             - Don’t scorn, show love
             - Unpleasant reaction to others
             - Not giving persons access to things they should have
             - Do not accept someone for who he/she is
             - Acts that cause discomfort to others
             - Persons being overlooked or bypassed for some reason
             - Some persons treated better than others
             - One race against another
             - Persons being treated unfairly because of their appearance
             - Keeping away from people who are ill


 Focus Group Results

 The statistical data (Table 1) shows that 8 focus groups were conducted in
 Guyana with 73 people participating in regions 4-6 & 10. Table 1 also shows a
 mixed socio-economic status of the focus groups which was also conducted on
 gender basis. It found that age groups were not strictly adhered to mainly with
 the female adolescent group. The keyword phrases were counted using content
 analysis and was recorded every time it was mentioned under the various theme
 headings because it shows the emphasis given to an issue by the respondents.




                                                                                30
In all, seven (7) tables were created around themes under the following
headings:

Table 1:     Focus Group Statistical data
Table 2:     Meanings of S & D
Table 3:     Personal experience S & D
Table 4:     Perpetrators
Table 5:     S & D re HIV/AIDS
Table 6:     Negative and Positive behaviour towards PLWHA
Table 7:     Preventive/ coping strategies and policy prescriptions to
             reduce/eliminate S & D

Preliminary findings

An overwhelming broad range of answers are given by the different groups,
hence long list tables. Some of the answers were very innovative e.g. placing
PLWHA on an island (suggestion also came from one PLWHA group) even
though this policy is viewed as discriminative by the other group. The adolescent
groups seems to have less understanding of the meaning of S & D than the adult
groups though they gave examples of what S & D is which shows some level of
understanding. The teachers and business men showed a greater awareness
and understanding of the issues surrounding S & D.

Almost all groups showed some level of care and understanding of treatment of
PLWHA but does not detract from the negative perceptions of HIV AIDS reported
in this report in various tables. There is also an vast number of people that
proposed special care and attention for PLWHA. However, the PLWHA
themselves do not want special treatment but wanted to receive the same
treatment at hospitals and clinics as everybody else.

A number of groups (e.g. teachers) suggest the need to remove the word ‘victim’
from the HIV because it is negative and discriminative.

The wide ranging answers can suggest some absence of government
involvement with public education and so people make up their own minds and
fill in gaps with both positive and negative perceptions based on their level of
education.




                                                                              31
                   Table 1:     Focus Group Statistical data

 Groups             Male                Females                Total
 Teachers           0                   8                      8
 Business           7                   0                      7
 community
 Business           0                   10                     10
 community
 Adolescents        0                   9                      9
 PLWHA (1)          0                   10                     10
 PLWHA (2)          0                   7                      7
 Religious          6                   0                      6
 community
 Adolescents        10                  0                      10
 PLWHA              6                   0                      6
 Total              29                  44                     9 focus groups


Teachers

All participants thought that PLWHA should be treated humanly and be given
special health care. However, they were cautious and one participant suggested
that people with AIDS should be placed on an island even though they realise
that this action is discriminatory. They proposed that love be shown but not to
eat food provided by PLWHA.

Business Community (male)

This group demonstrated a fairly good understanding of S&D. Their personal
experiences cited were of job hunting and work related. The participants
reminded persons present of an old TV government documentary aired when
HIV/AIDS first became known where men were seen in space-suit like uniforms
dealing with the PLWHA patients. This has coloured the way people view
HIV/AIDS. There should be a balance in the attention paid to the PLWHA as too
much attention can be misconstrued as sympathy. A good discussion ensued
with the question on avoidant behaviour. Most suggestions were negative and
participants felt that PLWHA can’t be trusted especially when it comes to food
handling nor would they touch someone with AIDS.

Business community (female)

A relatively high level of sympathy was shown; however, when it came to contact
and acceptance of PLWHA, some said they would have some reservations about
the illness and acceptance would depend if the person was a close relative.
They also suggest some solutions from suffers being good role models in the
community to laws that enforced fines being paid for people who gossiped about
PLWHA.

Adolescents

The young groups showed limited understanding of S&D but gave an interesting
example of how a bystander mistook the word ‘allergies’ for something


                                                                                32
contagious and moved away from the sufferer. They demonstrated limited
tolerance of PLWHA and suggested AIDS sufferers should be put in special
wards in hospitals where it nicely decorated and ‘airy’. This was the group that
stated that some people use bleach when dealing with AIDS sufferers as a
precautionary measure. They had heard of food handlers squeezing blood into
ketchup bottles therefore there is no trust.

PLWHA (female 1)

This group had the most accounts of being ostracised and not feeling loved by
their families and close relatives. They felt that the behaviours of relatives can
be hurtful enough to cause suicidal tendencies in sufferers. They suggested that
laws should be passed to protect PLWHA and society should be kind and loving
towards persons such as these.

PLWHA (female 2)

The participants had some harrowing accounts of poor treatment by family,
church and medical practitioners. Families were cited as the group with the most
avoidant behaviour such as avoiding the use of the same utensils, being overtly
unpleasant by not talking, touching and not wanting the company of PLWHA.
Some also experienced their husbands leaving home because they were angry
and having to beg medical personnel to treat them in hospitals. They pleaded for
society to have patience towards PLWHA and show support, care and love. The
participants said that they would support a food handler with HIV/AIDS and buy
food from them.

Religious community (male)

The group demonstrated a fairly good understanding of S&D and related
sympathetically with PLWHA. The said that although they would be initially
shocked and surprised it is their duty to treat people with respect and take care
of PLWHA. However, there should be a law against people who deliberately
infect others.

Adolescents (male)

This group believed that HIV/AIDS is a deadly disease and people should
proceed with caution especially where blood is involved. Their reaction to
PLWHA is mixed, they should be treated with love and respect, however, they
would not buy food from an HIV person.

PLWHA (male)

They group related that Guyana is a society where family ties determine whether
or not one gets a job. So there is an acknowledgement that Guyana is a highly
polarised society, so that D is based on social class, wealth and the
accompanying jealousy. They stated that PLWHA do not ‘come out’ because of
lack of trust as people often betray their trust. Some participants suggest
abstinence as solution to the spread of HIV as well as the use of narrative



                                                                               33
therapy of sufferers. The group were not keen on patients being ‘relegated to
Blueberry hospital’ as this only served to increase S&D.

Content analysis of Focus Groups


                                     Table 2
                          Personal Experience with S & D

              Stigma                        Count   Discrimination         Count
Key phrases   Treated unfairly/unequally      6     Not worthy/not            3
                                                    accepted
              Fear                            1     Racial /skin              5
                                                    colour/social status
              Branding/staining/labelling     8     Poor                      2
              Outcast/shunned                 2     Status in society         4
              Condemned                             Biased opinion
              Disowned by family              2     Community/family/         3
                                                    social exclusion
              Negative identity               2     Disliked                  3
              Name calling                    3     Show favouritism          7
                                                    to some
              Looking at someone as           2     D based on                2
              no good                               appearance
              To withdraw from                1     E.g. of D is              2
              someone                               experienced when
                                                    overweight or
                                                    sudden drop in
                                                    weight
              Not show respect                1     Being overlooked          3
              When people talk about          1     Suspicion attached
              you                                   to person or place
              Afraid of touching you          1     Name calling              1
                                                    Scorn due to              2
                                                    ailment
                                                    Different treatment       3
                                                    Being the right to        1
                                                    do something
                                                    Cannot use the
                                                    belonging of others




                                                                                   34
                                      Table 3
                           Personal Experience with S & D

          Negative                        Count Positive                    Count
Key       Death sentence                    4   Normal people who need       14
phrases                                         positive
                                                reinforcement/support
          Scared of contracting disease     7   Other worse forms of          7
                                                disease exist
          Pity them                         1                                 3
          HIV confused with AIDS                Understand illness            4
          Not human                         1   Speak up for rights
          Negative treatment may
          encourage suicidal
          tendencies
          Historical perceptions of              Don’t segregate              2
          doom and gloom
          Reaction to Social class -        5    Positive actions: Love,      4
          Jealousy/envy                          respect and socialise
                                                 with them
          Being poor                             Care-givers should take      3
                                                 precautions (use of
                                                 gloves)
          Human nature to s & d             2    Get use to AIDS
          Family reinforcement                   Patients need cheerful
                                                 clean environment
          Wealth/superiority                2    Provide diet, medication     2
                                                 and health care
          Being different                   1                                 2
          Based on appearance               1
          Stereotyped                       1
          Racial discrimination             1    No specially named HIV       1
                                                 AIDS clinics or doctors
          Being dark skinned                1
          Insensitive medical staff
          Burn personal belongings          1    Equal treatment              2
          after death
          Treated unequally                 1    Exercise patience with
                                                 victims
          Place them on an island           2
          Death sentence                    2    Normal people who need       2
                                                 positive
                                                 reinforcement/support
          Scared of contracting disease     2    Other worse forms of         1
                                                 disease exist
          Insensitive medical staff         1    Equal treatment              2
          Burn personal belongings          1    Exercise patience with
          after death                            victims
          Pity them                         1
          HIV confused with AIDS            1    Understand illness           1
          Not human                         1    Speak up for rights
          Negative treatment may            1    Depends if family
          encourage suicidal
          tendencies
          Historical perceptions of         1    Don’t segregate them         2

                                                                                  35
Negative                        Count Positive                   Count
doom and gloom
Reaction to Social class -        1    Positive actions: Love,     1
Jealousy/envy                          respect and socialise
                                       with them
Being poor                        1    Care-givers should take     1
                                       precautions (use of
                                       gloves)
Human nature to s & d             1    Get use to AIDS             1
Family reinforcement              2    Patients need cheerful      1
                                       clean environment
Being ridiculed
Wealth/superiority                1    Provide special diet,       2
                                       medication and health
                                       care
Family                            2    No specially named HIV      1
disassociation/discrimination          AIDS clinics or doctors
No job opps                       1
Being different                   1
Based on appearance               1
Stereotyped                       2
Racial discrimination             1
Being dark skinned/texture of     2
hair
Treated unequally                 1
Place them on an island           2
Separated belongings e.g.         1
utensils
Being gossiped about              1
Husbands leave home               1
Beg nurses to attend you          1
Lack of knowledge                 1
Lack of medical                   1
confidentiality




                                                                       36
                               Table 4 Perpetrators

          Perpetrators                    Count

          Family                               5
          Teachers                             2
          Indo-Guyanese                        2
          Rich people                          6
          General public
          Uneducated/uninformed                6
          Employers                            3
          No special group/                    2
          Human behaviour to be
          negative
          community workers                    2
          Drug pushers
          People in positions of               7
          authority
          People not infected                  1
          Care givers                          1


                                  Table 5:
                    Stigma and Discrimination re HIV/AIDS

                                         Count                                Count
Key       Use of same                      2       Need more health care        4
phrases   utensils/personal
          effects/space
          Afraid of Saliva contact         1       Need Adequate                5
                                                   medication
          Family/social exclusion                  Be open minded               1
          Deny/fear them                   4       Willingness to accept        1
          promiscuous living : deserve     2       Positive words should        1
          consequences                             accompany positive
                                                   actions
          Talk to but be afraid of         2       Be cautious with their       2
          physical contact even care               care by medical
          givers                                   professions
          Afraid of association with       1       Practice Christian           1
          victim                                   doctrine
          Cannot trust PLWHA               1       Special treatment            2
          Would not buy their food         4       Would buy their food         2
          e.g. rumour of squeezing                 based on environs
          blood into ketchup! (strong
          fear)
          Shocked/surprised                1       Give support                 1
          Avoid testing when pregnant      1       Don’t be alarmed             1
          Mixed reaction depends if        1       Need competent doctors       1
          family member
          Precaution e.g. use of           1       Peer support                 1
          bleach
                                                   Need policy on care          1
                                                   Treat equally no special     1
                                                   treatment

                                                                                    37
                                   Table 6
               Negative and Positive behaviour towards PLWHA

          Avoidant behaviour (-ive)          Modified behaviour
                                             (+ive)
Key       Use of same                    1   Need more health care     4
phrases   utensils/personal
          effects/space
          Afraid of Saliva contact       1   Need Adequate             5
                                             medication
          Family/social exclusion        2   Be open minded            1
          Deny/fear them                 4   Willingness to accept     1
          promiscuous living : deserve   2   Positive words should     2
          consequences                       accompany positive
                                             actions
          Talk to but be afraid of       2   Be cautious with their    2
          physical contact even care         care by medical
          givers                             professions
          Afraid of association with     1   Practice Christian        1
          victim                             doctrine
          Cannot trust PLWHA             1   Special treatment         1
          Would not buy their food       5   Would buy their food      4
          e.g. rumour of squeezing           based on environs
          blood into ketchup! (strong
          fear)
          Shocked/surprised              1   Give support              1
          Avoid testing when pregnant    1   Don’t be alarmed          1
          Mixed reaction depends if      1   Need competent doctors    1
          family member
          Precaution e.g. use of         1   Peer support              1
          bleach
          Victim becomes a recluse       2   Need policy on care for   1
                                             HIV AIDS patients
          Suicide                        2   Show kindness             1
          Community reacts against       1   Positive action against   1
          family of victim                   discriminators
          Lose of employment             1   More education            2
                                             Family support            1




                                                                           38
                                       Table 7
                Preventive/coping strategies and policy prescriptions
                   To reduce/eliminate Stigma and Discrimination

             Negative                                  Positive
Coping       Death/suicide         1   Preventative    Safe sex practices            2
strategies
             Sufferers             2                   Acceptance                    1
             become
             vindictive/spiteful
                                                       Socialisation/bring all      11
                                                       groups into contact
             Feel scorn            1                   Disclosure/‘Coming            5
             towards non                               out’ (help other
             infected                                  understand)
                                                       Share knowledge               1
                                                       Caregivers talk to            1
                                                       children about issues
             Secretive & lack      5                   Parental responsibility       1
             of honesty                                to set good principles
             between partners
                                                       Responsible                   2
                                                       behaviour among
                                                       PLWHA/take
                                                       precautions
                                                       Support from family           2
             girls to get          1   Policy/legal    Public Education/         11(eleven)
             pregnant to keep          prescriptions   School curriculum
             partner
             associate with        1                   Change image of               1
             drug                                      victim in HIV
             dealers for
             money
             No physical           1                   Sex after marriage            1
             contact
             Some sufferers        1                   Change victim to              1
             are over-                                 ‘fighter’
             sensitive
                                                       Equal rights to social        2
                                                       benefits
                                                       Group discussions in          2
                                                       community/outreach
                                                       Pass laws                     3
                                                       Media sensitisation           2
                                                       More involved govt            2
                                                       ministries
                                                       Peer educators                3
                                                       /councillors to share
                                                       knowledge
                                                       Use of mediums                3
                                                       Provide testing               1
                                                       services at clubs




                                                                                         39
NEVIS

Introduction

HIV/AIDS surfaced on the island of Nevis in 1987 when the first case was
diagnosed. As of December 2006, there have been 54 reported cumulative
cases. 48% of these cases are male, and 52% are female. 22 persons have
succumbed to the disease since the first case was diagnosed in 1987. 43/54
persons testing positive since 1987 are in the 20-49 age range. The average
annual incidence of HIV/AIDS cases is 2.

Antiretroviral medication is available free of cost to PLWHA’s. Of the 15
PLWHA’s in care and treatment, 13 are on antiretroviral medication. Testing is
also available free of cost to nationals of St. Kitts/Nevis at the Alexandra Hospital
Laboratory (public hospital). Due to issues of “confidentiality” cited by many,
some persons opt to get tested at the Avalon Laboratory (private lab) where
there is a cost of $75 EC dollars for the test. Approximately 800 combined HIV
tests have been conducted annually in the country at these two locations. The
PMTCT Programme and the VCT Programme have also contributed to the rise in
the number of tests conducted annually. The PMTCT Programme in particular
boasts an uptake rate of 100%.

Recognizing the need for a coordinated response to HIV/AIDS, the government
of Nevis established the Nevis HIV/AIDS Coordinating Unit, with an appointed
HIV/AIDS Coordinator at the helm in 2001. In addition, the program currently
benefits from a World Bank Loan and a grant from the Global Fund. An influx of
financial support in the past four years has caused the program to grow
immensely which has resulted in notable success in the priority areas within
which it works namely:

   •    Prevention
   •    Treatment Care and Support
   •    Advocacy
   •    Surveillance, Epidemiology and Research
   •    Programme Coordination and Management

There are a number specific stigma and discrimination initiatives carried out with
regard to the Advocacy priority area of the programme. Four of these initiatives
have reached significant milestones in 2007 including:

   •    The establishment of a Human Rights Desk where PLWHA’s can report
        acts of S&D (May, 2007-based in St .Kitts)
   •    Law Ethics and Human Rights Consultation (June 2007-in process)
   •    Development of an S&D booklet to make PLWHA’s aware of recourse
        mechanisms if they are victims of S&D (June 2007)
   •    Revision of HIV/AIDS National Strategic Plan (Jan.’07-in process)

Three standard focus groups were recommended by CARICOM/PANCAP/Lead
Researcher namely a managerial focus group, a youth focus group, and a
PLWHA focus group. Nevis was not able to conduct a PLWHA focus group as a


                                                                                  40
support group does not currently exist on the island. To date, PLWHA’s are not
comfortable establishing themselves in a group as society has not been
supportive of PLWHA’s who have disclosed their status in the past. The PLWHA
group therefore was substituted with a construction worker focus group. The
rationale for the selection of this group resides in the fact that there have been
instances of stigma and discrimination within that professional group in the past
against a PLWHA.

The other two focus groups selected were a non–national focus group and a
police focus group. Over the past 10-15 years, there has been an influx of
immigrants into the island of Nevis. These immigrants are mainly from the
Dominican Republic and Guyana. A significant number of these non-nationals
have reported instances of stigma and discrimination with regard to employment
and “wrongful” suspicion of criminal activity. The aforementioned reason is the
rationale for the selection of the two focus groups which were to be selected
independently by countries. The Guyanese are often the victims of stigma and
discrimination and the police are often the alleged perpetrators.

Key Informant interviewee selection was based on sampling a representative
cross section of the population. In this vein, fifteen persons were selected from a
variety of backgrounds and professions including but not limited to the health
sector, labour department, police force, college students, reporter, secretarial
personnel and persons affected by HIV/AIDS.

There were a few hiccups encountered during the survey process. Some of
these included:
       • Invited focus group subjects failed to turn up in many instances (there
          were 2 focus groups with less than 6 persons)
       • Key informants originally selected to be interviewed were not available
          for scheduled interviews
       • The late arrival of survey instrument and funds needed for
          implementation hampered the process as selected interviewers could
          not commit to later dates; other projects assigned to the NR and other
          staff conflicted with this survey
       • A standardized data collection and reporting guide would have greatly
          facilitated the process and ensured homogeneity among participating
          countries

Despite the hiccups encountered a wealth of information was gathered during the
exercise. Persons were generally willing to share their thoughts on the issue of
stigma and discrimination, so much so that the average focus group lasted
approximately 2 hours. In a few instances persons were actually insulted by the
issuance of a stipend at the close of the interview/focus group. One interviewee
actually relayed that he was not comfortable receiving the money and would
have preferred an HIV/AIDS pin or some token that supported the HIV/AIDS
campaign.




                                                                                41
                           Key Informants Responses

Country/      Definition of Stigma
Region
Nevis         - Can cause harm or hurt, people are afraid to deal with the subject
              - People perceiving you to be a certain way
              - Certain belief you ascribe to people
              - Along the lines of discrimination
              - Being rejected
              - Attaching a negative view, feeling, attitude towards, something or
                someone
              - People assume things about you without facts
              - Discrimination, stereotype
              - Having bad attitudes towards other people
              - Talking about something constantly, keep mentioning it
              - A feeling about something



 Focus Group Results

 The statistical data (Table 1) shows that 5 focus groups were conducted in Nevis.

 In all, seven (7) tables were created around themes under the following
 headings:

 Table 1:     Focus Group Statistical data
 Table 2:     Meanings of S & D
 Table 3:     Personal experience with S & D
 Table 4:     Perpetrators
 Table 5:     S & D re HIV/AIDS
 Table 6:     Negative and Positive behaviour towards PLWHA
 Table 7:     Preventive/ coping strategies and policy prescriptions to
              reduce/eliminate S & D

 Content analysis of focus groups

 Guyanese Nationals (Migrant Workers)

 Overall, this group were inclined to discriminate against PLWHA even though
 they had personal experience of being discriminated against. Some participants
 were scornful of PLWHA and for those who were slightly positive still would
 refuse to even run errands for PLWHA. Some felt that factors other than S&D
 were factors driving HIV/AIDS underground.

 Youth

 Not everyone understands S&D. This group, having misinterpreted the question,
 ‘which groups of people are most likely to discriminate’, gave examples of those
 who are more likely to be discriminated against. Most objected to buying food


                                                                                42
and one submitted that he would buy drink but not food. Fear stems from the
fact that blood can drip into food and cause spread of HIV/AIDS

Police

Overall the police were discriminatory against PLWHA and felt that they should
have knowledge of those PLWHA in their society however, no reasons were
offered as to why? This was surprising particularly because of the nature of their
job to uphold natural justice. They are a status orientated group and feel that
people should be treated on this basis. There was a slip between their
perception of what was wrong about S&D but this did not translate into how they
should treat PLWHA. There’s a general perception that PLWHA should be
avoided, however the problem can be resolved if they knew who in their society
had H/A.

Private Sector Managers

Have a good understanding of S&D, although they were aware of the modes of
transmission and level of risk most were still likely to discriminate against
PLWHA. For example if a worker was a sufferer and it was likely to affect their
business or customers objected they would sent the worker on a long vacation
with leave.

Construction Workers

They had never heard of the term and so had no understanding of S and stated
that it came ‘from a tree’ or a Hibiscus or being ‘stuck up or something’. Most
ignorance was shown by this group among all the other and most unlikely to
have anything to do with PLWHA to the point that they would request transfer to
another site if one of their co-worker was a sufferer.

                                   Table 1
                          Focus Group Statistical data

Groups            Males           Females           Ethnicity       Total
Non-National      3               1                 Guyanese        4
Youth             1               4                                 5
Police            5               0                                 5
Private Sector    4               3                                 7
Managers
Construction      10              0                                 10
workers




                                                                               43
Statistical Content Analysis


                                  Table 2
                         Stigma and Discrimination

            Stigma                        Count   Discrimination            Count
Key         Something that sticks to        3     Being pushed aside/no       2
phrases     you and difficult to remove           one talks to you
            Something bad                   1     Disadvantaged               1
            Something that you catch        1     Isolated because of         1
                                                  AIDS
            Something stagnant              1     Being scorned/inferior      2
            A human disease                 1     Status in society           1
            Separation                      1     People not from your        1
                                                  country
            repulsion                       1     Scorning people who         2
                                                  do not fit in society
            Prohibiting involvement         1     To put someone lower        1
                                                  than others
            A –vie/+ive perception of       1     Being treated               1
            someone                               differently based on
                                                  age/sex
            Branding/ostracised             1     Using knowledge about       1
                                                  someone against that
                                                  person
            Cultural-way you talk what      1     Based on sex and age,       1
            church you attend etc.                education, relationship
                                                  Lack of information         1
                                                  D stems from S              1
                                                  Based on religion           2
                                                  Sickness such as            1
                                                  obesity




                                                                                  44
                                     Table 3
                Personal Experience with Stigma and Discrimination

            Negative                         Count Positive          Count
Key         Religion/racial D                  6
phrases
            Gender D
            D based on jealousy,               5
            appearance, job, education,
            dress
            Being a ‘mantana’ (girl            1
            acting like a boy)
            Discrimination based on            4
            nationality
            Treated unequally/differently      5
            Being misinformed                  1
            Name calling                       1
            Not being given enough             1
            resources to carry out work
            functions
            Not being involve in the           1
            policy making process
            Not being appreciated for          1
            the work you do
            Poor performance                   1
            Females at a club who              1
            socialise more with males
            with money
            People perceived as                1
            ‘antyman’ or gay



                                        Table 4
                                      Perpetrators

          Perpetrators                                  Count
          Police                                          1
          Employers                                       6
          Authorities (government workers)                2
          Wealthy people                                  3
          Society                                         1
          Human nature                                    1
          Nationals against non-nationals                 2
          Returning nationals/expatriates                 1
          The uneducated/unenlightened                    2
          Political groups                                1
          Religion                                        3
          Poor people against the rich                    1
          Peers who are jealous of wealthy                1
          people




                                                                         45
                                   Table 5
                     Stigma and Discriminaton re HIV/AIDS

          -ive                              +ive                              Count
Key       Exile/isolate those who            8     Treat with respect           1
phrases   deliberately infect others
          Isolation does not mean            1     Do not publicise them as     1
          discrimination                           it is S&D
          Make PLWHA known to                1     Be open minded and           1
          through media to prevent                 concerned
          them from spreading the
          disease
          Treat them differently/with        3     Should be treated just       8
          scorn                                    like any other person
          Medication should only be          1     Mandatory testing            1
          made available to those who
          can afford it
          Having H/A is a contract to        1     Special treatment            3
          kill                                     because need more care
          D is only bad if you show it       1     Need love                    1
          Cannot trust PLWHA                 2     Need medication to live      1
                                                   longer
          Treat differently because          1     Treat normal                 1
          those with HIV are more
          inclined to spread the
          disease than those with
          AIDS who don’t have the
          energy to spread it
          Monitor PLWHA                      1     Sympathise
          Avoid them
          Police felt that they are a
          target for deliberate infection
          Would be hesitant towards
          person if their was no prior
          relationship
          Difficult not to discriminate      1
          Be cautious
          Know how they are
          Have different burial
          grounds just like cholera
          150 yrs ago




                                                                                    46
                                Table 6
            Negative and Positive behaviour towards PLWHA

          Avoidant behaviour (-ive)             Modified behaviour
                                                (+ive)
Key       promiscuous living : deserve      1   Need equal/better          9
phrases   consequences                          health care
          Health care equality should       5   Equal treatment            5
          depend on how the disease             because also human
          was contracted
          H/A is not like any other         1   Would not run              1
          disease because people
          contract it though choice
          Use different utensils and        2   Would have no problem      2
          wash clothes with                     Embracing them/Would
          disinfectant                          probably touch them
          Would not sleep if child’s        1                              1
          teacher had H/A
          Not comfortable with              1   Would not discriminate     1
          disease whether family                but would be careful
          member or not
          Would not eat food cooked         3   Would be comfortable       1
          or served                             only if person is family
                                                member
          Depends if close family           4   Play with person at        1
          member                                school
          If teacher has it would           1   Would not mind if          1
          depend on whether you like            teacher who has it does
          the teacher or how close the          not do anything to harm
          teacher comes to you                  students`
          Would not buy food because        1   Would not condone
          not trusted to handle food            abuse of PLWH
          Would prefer no contact               patients too have rights
          unless in relation to their job
          Knowledge of status of                Take precautions
          person in society is                  although we are more of
          important to how they a re            a danger to PLW full
          treated                               blown AIDS
          Depends if food handler is        1
          known
          If co-worker should be given      1
          different rules by supervisor

          No trust of PLWHA                 1
          Depends on how sufferer           1
          caught the disease
          Build separate clinics            1




                                                                               47
                                    Table 7
 Preventive/coping strategies and policy prescriptions to reduce/eliminate S & D

             Negative                               Positive
Coping                              Preventative    Medical personnel are
strategies                                          generally cautious
             Sufferers become                       Talk to person they
             vindictive/spiteful                    know with disease and
                                                    coach them about
                                                    what is expected of
                                                    them
             Feel scorn                             Learn more about the
             towards non                            disease
             infected
                                    Policy/legal    Public/school           5
                                    prescriptions   Education
                                                    Group discussions in
                                                    community/outreach
                                                    Mandatory testing
                                                    More legislation on
                                                    how to treat PLWHA in
                                                    the work place




                                                                                48
ST KITTS

Introduction

Located in the Caribbean Sea, the island nation of Saint Kitts and Nevis occupies
a total of 261 sq km (Saint Kitts 168 sq km, Nevis 93 sq km). The nation is
roughly one and one-half times the size of Washington, DC and is approximately
one-third the distance from Puerto Rico to Trinidad and Tobago. The country is
home to 42,696 Kittitians and Nevisians, who are primarily of African descent
(July 2006 est.). Age cohorts are as follows: 0-14 years: 27.5% (male 5,515,
female 5,263); 15-64 years: 64.3% (male 12,605, female 12,572); 65 years and
over: 8.1% (male 1,313, female 1,861) (2006 est.). The total fertility rate for the
nation is 2.31 children born/woman (2006). The 2006 estimated population
growth rate was 0.5 percent and the net migration rate was - 4.7 migrants/1,000
population. A member of the Commonwealth of Nations, Saint Kitts and Nevis
received its independence from the United Kingdom in 1983. The official
language is English and the legal system is based on English Common Law. The
1997 unemployment rate was 4.5 percent.2

The country is divided into 14 parishes: Christ Church Nichola Town, Saint Anne
Sandy Point, Saint George Basseterre, Saint George Gingerland, Saint James
Windward, Saint John Capesterre, Saint John Fig Tree, Saint Mary Cayon, Saint
Paul Capesterre, Saint Paul Charlestown, Saint Peter Basseterre, Saint Thomas
Lowland, Saint Thomas Middle Island and Trinity Palmetto Point.

Surveillance Data

Saint Kitts and Nevis3

I. Demographic, Social and Economic Indicators
Estimated Population……………................................................................ 43,000
Population Growth Rate……………............................................................... 1.1%
Life expectancy at birth
Women ............................................................................................................. 72
Men.................................................................................................................... 69
Human Development Index……….................................................................... 49
Human Poverty Index
Per Capita Gross National Income, ppp, Intl dollar rate….......................... 11,190
Per Capita Government Expenditure on Health at Intl dollar rate.................... 427




2
  Central Intelligence Agency (CIA) 2005. The CIA World Factbook, Available at
http://cia.gov/cia/publications/factbook/geos/sc.html (accessed March 21, 2007)
3
  UNAIDS/WHO working group on global HIV/AIDS and STI surveillance. Report on the global AIDS
epidemic 2006. Annex 1: Country Profiles. Retrieved March 21, 2007 from the World Wide Web:
http://data.unaids.org/pub/GlobalReport/2006/2006_GR_ANN1R-T_en.pdf


                                                                                                                       49
St. Christopher & Nevis Diagnosed Cases of HIV: 1987 – 2006

Cumulative Number of Cases                 – 273
Cumulative Number of Deaths                – 81
Number in Care (2006)    St. Kitts         – 43
                         Nevis             – 15
Number on Antiretroviral St. Kitts         – 17
                         Nevis             – 13

The population of St. Kitts and Nevis is 42,696. Since there were 273 cases with
81 deaths, the current number of cases is 192. The ratio of HIV/AIDS per
population is, therefore, 1:222 that is, 1 case of HIV/AIDS for every 222 persons
in St. Kitts and Nevis.

    Source: Clinical Care Coordinator. St. Christopher Health
    Information Unit Annual Report – 2006, Health Information Unit, St.
    Kitts, (June, 2006).

Anecdotal or Documented Evidence of Stigma and/or Discrimination

Group members PLWHAS over the years have experienced numerous cases of
stigma and discrimination from families, community and in the work place and
from health care providers. Such include the following:

•       One young man was denied entry into his home on returning from the
        hospital having been diagnosed with HIV.

•       One lady was harassed on her job by her supervisory staff to the point
        where she just could not take it anymore and she quit. She was not
        diagnosed with HIV; only her husband was.

•       One lady was told by one of her supervisors that the aggressive behaviour
        of her students is as a result of what she is going through
•       One young man was verbally abused by a maid at a hospital, he died later
        that day...unconfirmed sources said that he was also physically
        abused........on investigation, this was not confirmed.....he did not live to
        tell his story.
•       One young man was denied entry into a certain restaurant, his lunch was
        given to him in a brown paper bag and he was told he had to leave he
        cannot stay there to eat his lunch because he had AIDS. He was denied
        the services of a barber, and was told because he had AIDS he can’t get a
        haircut there. At a hospital he was set in a side room by himself and
        received very poor services from some of the staff members both medical
        and non medical. His house was burnt, the government provided a house
        for him but he was never able to use it because the people in the
        community did not want him there because he had AIDS. When he rides
        the bus no one wants to sit close to him because he had AIDS and skin
        rashes. The proprietor of a guest house claims that he had to burn or
        dump the sheets and towels used by this young man whenever he stays
        there, and he does not want him back there....just a few weeks ago I


                                                                                  50
      learnt that this proprietor is a pastor and a former sanitary health
      inspector.
•     When visiting PLWHAS at the hospital, the nurses told the visitors to wear
      masks , some were even told “to be careful” when you visit, some visitors
      to the hospital pass by with skinned up faces peeping in to see who in
      there....others are hears to say... he has AIDS; This young man lost some
      of his close friends. This young man and his wife were thrown out of a
      bible school and off the island of Puerto Rico because he had AIDS. He
      was denied the opportunity to remain and access further treatment that
      was recommended by his doctor in Puerto Rico....They were given 48
      hours to leave the college and the island before deporting procedures
      were initiated....They were told that they were on the island illegally
      because they lied on the immigration form and said they did not have
      AIDS ( no such question was on the form). After speaking to a group of
      students at the local college... on his way home no one wanted to get in
      the bus with him...not the same seat, not the seats directly in front or
      behind him.
•     This young lady had a baby who died, HIV test were performed for both of
      them, the doctor never told her the results, he was dogging her when he
      was confronted by another of her health care providers, he said that he
      already told her that all of them have AIDS and all of the going to die,
      ..............A family member said that it should have been cancer she have
      and not AIDS.
•     One young lady was denied additional Life insurance coverage on the
      grounds that she is “High Risk” because her husband died from HIV/AIDS.

Discrimination against people living with HIV/AIDS continues in St. Kitts and
Nevis as it does throughout the rest of the Caribbean. There has been no
revision of existing legislature to address HIV/AIDS. There is no national policy
on HIV/AIDS and while some private sector organizations have had
presentations on AIDS in the workplace issues, there are no written policies,
either in the private or public sector, related to this area.

In St. Kitts and Nevis PLWHAS feel powerless to fight stigma and discrimination
and this has resulted in the “going underground” of PLWHAS even further when
they are confronted with such situations.

Without HIV/AIDS specific legislation we are powerless to stand up and fight
back. The time has come for us in St. Kitts and Nevis to have HIV/AIDS specific
legislation to deal with stigma and discrimination.




                                                                              51
                            Key Informants Responses

Country/       Definition of Stigma
Region
St.Kitts       - Outward expression of what is in one’s mind
               - People’s categorizing and assessing a situation and reacting to it
               - Holding perceptions, judgements
               - Lack of understanding of a situation that other persons are in
               - Negative popularity from branding
               - Calling down or labelling individuals
               - Lack of knowledge making people afraid of associating with those
                 infected with HIV
               - Motion insulting from a belief or feeling
               - Feelings of shame and condemnation
               - Term attached to a certain type of behaviour of a group of people
               - Feeling differently about someone based on some criterion


 Focus Group Results

 The statistical data (Table 1) shows that 5 focus groups were conducted in St
 Kitts. Most participants would buy food as long as it’s in a bottle or tin but not
 fresh food.

 In all, seven (7) tables were created around themes under the following
 headings:

 Table 1:      Focus Group Statistical data
 Table 2:      Meanings of S & D
 Table 3:      Personal experience S & D
 Table 4:      Perpetrators
 Table 5:      S & D re HIV/AIDS
 Table 6:      Negative and Positive behaviour towards PLWHA
 Table 7:      Preventive/ coping strategies and policy prescriptions to
               reduce/eliminate S & D

 Content analysis of focus groups

 Commercial Sex Workers (Dominican Nationals)

 Overall, this group were inclined not to discriminate against PLWHA and
 expressed that they themselves had personal experience of being discriminated
 against because of nationality and the nature of their work. They were aware of
 the precautions that they should take and very empathetic towards PLWHA but
 associated imminent death with the illness indicating that thy ewer not aware of
 the anti-viral medicine that is available to prolong life expectancy. People with
 AIDS should have access to the same treatment but that treatment should be
 done separately in clinics due to possibility of contamination, i.e., exercise
 caution.


                                                                                      52
Students

Sigma is discrimination, they are interrelated. This group demonstrated a good
understanding of S & D even though they may not be differentiating between the
two terms. some thought that D happens in the ‘subconscious’ as a form of self
‘preservation’. Some felt that they treat PLWA differently and would not want any
contact. Interestingly, a statement was made about how S&D are not strong
factors in spreading the disease, if it were so the spread of the disease would be
in the decrease. i.e., S& D would be a strong deterrent.

Student teachers

This group is knowledgeable about S&D but they did not know much about
HIV/AIDS. They would treat PLWHA differently, they would discriminate because
they feel uncomfortable being near them, for example, one participant stated that
if they knew someone with HIV they would not sit on the same seat. A worrying
sign because these are the people entrusted to education the nation. They
propose that since its too late for this generation to change their ideas they still
have a responsibility to try better with the next generation. Fear of contracting
the disease is strong and a sense of fear that if they segregate PLWHA are likely
seek to revenge. So need to let PLWHA know the alternatives so they don’t feel
inclined to maliciously spread the disease.

Human Resources Personnel

Many examples of S&D, and some stated that the term originates from this
disease. Since it’s just like any other disease, sufferers should not be separated
by clinics use of separate days for certain diseases. Instead have a card system
to ensure privacy especially being a small island word soon gets around. a
mixed group in terms of views on avoidance, some say ‘better be safe than sorry’
even if a family member contracts the disease. Would not employ a PLWHA as
a cook due to possible maliciousness. This same group stated that they avoid
testing for fear of knowing that they have the disease.

Taxi Drivers

A very understanding group who had few avoidant behaviour and were
sympathetic towards PLWHA. People with symptoms of end stage disease
should not handle food in case something falls into the food. Would not eat in a
restaurant if person who works there has aids until participants themselves have
education on the topic for ease. They would treat PLWH different from PLWA
because of exposure to risk. They had a great outlook for good treatment of
PLWHA in the Caribbean and this study will indeed reveal how Caribbean people
do not discriminate.




                                                                                 53
                                     Table 1
                            Focus Group Statistical data

Groups                Males            Females        Ethnicity                Total
CWS (Non-                                 3           Dominican
National)
High school             2                  5          Kittsian                  7
students
Student teachers        2                  4          Ditto                     6
Human Rights            1                  3          Ditto                     4
personnel
Taxi                    5                  1          Ditto                     6

Statistical content analysis

                                        Table 2
                              Stigma and Discrimination
              Stigma                         Count   Discrimination              Count
Key           Something that sticks to               Lack of                       1
phrases       you and difficult to remove            information/education
              Something bad                     1    Disadvantaged                     1
              Something that you catch               Isolated because of               2
                                                     AIDS
              Racism                            1    D is S                            1
              Bring down someone’s              3    Put someone down to               1
              self esteem                            a lower level
              Treating someone like an          1    Being D because of                1
              outsider (not welcome)                 difference
              Name calling                      1    D is the use of the               1
                                                     perception of stigma
              Separation/isolation              3    D stems from S                    1
              Treat people differently          1    Behave negatively                 1
              S is what people think                 A difference                      1
              about others
              Negative labels or                6    Involves retaliation              1
              negative reaction against
              an idea
              Positive labels                        Being lonely/isolated             1
              Holding ideas and passing              ‘bugal’- people who               1
              it on                                  take in excessive
                                                     alcohol
              A taboo                                Refusing to associate
                                                     with someone
              Portray a sense of                     When fundamental
              denigration                            Human Rights is
                                                     violated on a basis of
                                                     gender, race, infirmity
              Resent based on disease
              An attitude towards a             2
              situation
              Being scorned e.g. as a           1
              worker you must put your
              uniform in a separate
              section


                                                                                           54
                                   Table 3
              Personal Experience with Stigma and Discrimination

          Negative                      Count Positive                Count
Key       Nationality                     3   Occurs when in            1
phrases                                       competition with each
                                              other
          Not being popular with          1
          others
          Being avoided because of           2
          illness, being in prison
          Being black                        3
          Town people against                1
          country
          Hurting feeling when people        1
          are discriminating
          Being talked about                 1
          D because of jealousy              2
          Occurs when in competition         1
          with each other
          People who D are insecure          1
          about themselves
          D because of where one             1
          comes from
          (generalisations)
          Big family people laugh            1
          Being big                          1
          Race/colour/rich/poor              1
          Targeting people                   1
          Because of intellectual            1
          ability



                                     Table 4
                                   Perpetrators

             Perpetrators                                Count
             Ignorant uneducated people                    5
             Popular people                                1
             General public                                1
             Colleagues                                    1
             Poor people                                   1
             Jealous people                                1
             Religious background                          1
             Politicians
             Law makers
             National against Hispanics
             Children teasing older people                 1




                                                                          55
                                  Table 5
                    Stigma and Discrimination re HIV/AIDS

          -ive                          Count                              Count
Key       PLWHA are not as normal         1     Treat with respect           4
phrases   because they have to take
          constant medication
          Should not mix with general           Treat normal as humans       9
          public
          Ostracised                      1     Be encouraging and          11
                                                supportive
          Don’t trust PLWHA               3     Treat equally/fairly         6
          D is human nature                     Cancer kills faster than     3
                                                HIV/AIDS
          Can’t be treated the same       1     Be sympathetic               1
          way
          Death sentence                  2     Same level of health         2
                                                care
          End stage aids can be a               More health care             5
          turn off
                                                Need better mediation        2
                                                Low cost treatment
                                                Ask assistance of            1
                                                foreign agencies re
                                                costs
                                                Don’t                        1
                                                separate/quarantine
                                                Reduce cost of drugs         2




                                                                                 56
                                   Table 6
               Negative and Positive behaviour towards PLWHA

          Avoidant behaviour (-ive)             Modified behaviour
                                                (+ive)
Key       Don’t let the spit balls get on   1   Need equal/better          10
phrases   me                                    health care
          Avoid eating food cooked by       5   Protect self               3
          PLWHA
          Suggest that family member            Create a bond              1
          LHA be tested before                  agreement or teachers
          contact                               to follow a code
          Fear of contracting the           5   Look out for them          1
          disease
          PLWHA should not work in          3   Don’t avoid them           1
          restaurants
          PLWHA can be vindictive           3   Don’t separate by having
          and so try and spread the             special days for certain
          disease                               disease
          Law promotes D                        Keep privacy by using
                                                card system
          Don’t trust PLWHA                 4   Everybody should have
                                                an AIDS test
          Depends if close contact          2   Hug them, love them        2
          with outsider otherwise if
          family would treat positive
          People need to know if            1   Have a test before a
          working with PLWHA esp. in            new relationship
          factory
          Less sympathy for gays who        1
          contract it because they
          conduct risky behaviour
          Keep disease a secret             2




                                                                                57
                                    Table 7
             Preventive/coping strategies and policy prescriptions
                To reduce/eliminate Stigma and Discrimination

             Negative                                  Positive
Coping       Put them in a         4   Preventative    Practice safe sex       2
strategies   separate place
             as a preventative
             strategy
             Sufferers             3                   Talk to person their    2
             become                                    know with disease
             vindictive/spiteful                       and coach them about
                                                       what is expected of
                                                       them
             Feel scorn            2                   Learn more about the    2
             towards non                               disease, talk to
             infected                                  someone with AIDS
             People avoid          1                   Isolation is bad        1
             testing for fear of                       because it reminds
             knowing that they                         them of slavery
             have the disease
                                                       Talk to family about    1
                                                       sex education
                                                       Use cable tv             2
             Put them in           2   Policy/legal    Public/school           11
             reasonable                prescriptions   Education
             isolation, no
             mingling
             Wear protective       1                   Group discussions in    1
             clothing                                  community/outreach
                                                       Mandatory testing       1
                                                       More legislation on     1
                                                       how to treat PLWHA
                                                       in the work place
                                                       Various groups-         1
                                                       church youth etc.
                                                       should be involved in
                                                       disseminating info
                                                       Booklets                1
                                                       Use music to spread     1
                                                       info role models
                                                       World AIDS day          1
                                                       Write songs             1
                                                       PLWHA should be         1
                                                       used to communicate
                                                       in workshops




                                                                                   58
SURINAME

Introduction

The Republic of Suriname covers 163,820 km2 along South America’s northeast
coast. It is bordered by French Guyana to the east, Guyana to the west, and
Brazil to the south. The climate is tropical with a mean annual temperature of
27ºC. The two most urban districts - the capital city of Paramaribo and Wanica -
cover 0.4 % of the land, presenting 70% of the total population.

The population density in the urban districts is 526.5 persons per km², while the
overall population density in Suriname is 3 persons per km².

Based on the seventh national census, the population in 2004 was 492,829. The
major ethnic groups in the coastal areas are of Hindustani, Creole and Maroon
descent, accounting for 60 % of the population. The fourth largest ethnic group is
Javanese, descendants of Indonesian contract laborers. Smaller ethnic groups in
the coastal area are the indigenous, Chinese, Caucasian and an increasing
number of people of Mixed ethnicity. The populations in the interior are mainly
Maroons (90 %), descendants of runaway slaves, and Amerindians (10 %), the
indigenous population.

Population Pyramid by age group and sex, SURINAME Census 2004

The population structure shows that the largest age group is that of 0 – 14. The
youth under 15 years of age make 30% of the population, while the adult aged
15 – 59 totals 61 % of the total population. The group of senior citizens > 60
years represents 9 % of the total population

School Children and Adolescents:
External causes such as accidents and trauma are the main causes of death
among the age group 5-14 years old. Among 15-19 year olds, prostitution, crime
and drug use are the main problems in socially deprived areas.

Among this age group the external causes are also the main causes of death,
followed by malignancies and HIV/AIDS

       80000 70000 60000 50000 40000 30000 20000 10000   0   10000 20000 30000 40000 50000 60000 70000 80000


       > 75

      60-74


      45-59

      30-44

      15-29


      0-14

                                    Males                                Females

                                                                                                               59
Adults

External causes (accidents and trauma) are the main causes of death in the age
group 20 – 29 years old, followed by HIV/AIDS and cardiovascular diseases
(including cerebrovascular diseases).

In the age group 30 – 39 years old the main causes of death HIV/AIDS, followed
by external causes and cardiovascular diseases.

Cardiovascular diseases (including cerebrovascular diseases) are the main
causes of death in the age group 40 – 59 years old, followed by malignancies,
HIV/AIDS, diabetes mellitus and external causes.

In 2000 – 2004, AIDS was the second and third leading cause of death for males
and females in the age group 15-44 years old, respectively.

Indigenous Groups

The Medical Mission, a government funded, nonprofit organization, provides
preventive and curative health care free of charge to the 50,000 people. There
are about 20,000 - 40,000 gold miners, an industry predisposing workers to
mercury poisoning and malaria transmission; other pertinent conditions are
HIV/AIDS       and       Sexually      Transmitted       Infections    (STI’s).

Chronic Communicable Diseases

From 1997 to 2000, a yearly average of 87 suspected cases were reported of
which 53 were confirmed. Of these, 2 were HIV co-infections in 1998 and 9 in
1999. Since 1999, all clinical tuberculosis (TB) patients are tested for HIV. In
2000, 13 out of 90 TB cases, in 2001, 9 out of 80 TB cases and in 2002, 21 out
of 100 TB cases were HIV co-infections. A total of 161 new cases of leprosy
were reported during 1997-1999, 30% of all cases occurring in children 0-14
years.

In 2003 and 2004 there were respectively 111 and 101 confirmed cases of
tuberculosis. 20% of the tuberculosis patient is also HIV positive.

Diagnostic Services and Blood Banks

All blood donors are screened for HIV, HTLV, hepatitis B and C, malaria, and
syphilis through the National Reference Laboratory for HIV and other
international reference laboratories.




                                                                               60
                           Key Informants Responses

Country/      Definition of Stigma
Region
Suriname      Due to the language difference and despite translation it was
              necessary to use the summary of the National Researcher for this
              section.
              - Was not aware of the meaning of the word Sigma. They have
                 heard about it when people spoke about it on the News or on the
                 Radio. However, they did not grasp the meaning of this particular
                 quote.
              - Sex Workers knew discrimination and felt that people discriminate
                 against them because of their involvement in commercial sex. (The
                 same response from male sex workers and transvestites).
              - Discrimination is when you are being treated as an outcast because
                of your hair, colour, your culture or just the way you do your hair.
              - Yes, people within our society do not accept you when you are
                different from them even though we are living in a multicultural
                society.
              - Most respondents felt that PLWHAS should be treated with love
              and
                attention.



 Focus Group Results

 The statistical data (Table 1) shows that 7 focus groups were conducted in
 Suriname but there is no data on the number of participants or gender except
 where specified. The keyword phrases were counted using content analysis and
 were recorded every time it was mentioned under the various theme headings
 because it shows the emphasis given to an issue by the respondents.

 In all, seven (7) tables were created around themes under the following
 headings:

 Table 1:     Focus Group Statistical data
 Table 2:     Meanings of Stigma and Discrimination
 Table 3:     Personal experience with Stigma and Discrimination
 Table 4:     Perpetrators
 Table 5:     Stigma and Discrimination re HIV/AIDS
 Table 6:     Negative and Positive behaviour towards PLWHA
 Table 7:     Preventive/ coping strategies and policy prescriptions to
              reduce/eliminate Stigma and Discrimination

 Preliminary Findings
 Most of the participants had little or no knowledge of S & D and most of their
 exposure to the subject seemed to have come from the media educational
 campaigns or support group meetings. And almost all perceived that stigma and
 discrimination were interrelated.


                                                                                61
No statistical data is available for this country and limited data of who the
perpetrators are. The focus group sessions were brief if the transcripts are
anything to go by.

Generally participants felt that some form of education is needed to address
issues of S&D and to let society be aware of the impact on the people who are at
the receiving end. Otherwise not much attention was given to address how the
problem of S&D should be addressed or what policy prescription should be used
to reduce S&D.


                                      Table 1
                             Focus Group Statistical data

 Groups               Male                  Females          Total
 Drug addicts
 MCWs
 Prisoners
 Adolescents
 PLWHA (F)
 Military Personnel
 WCWs
 PLWHA (M)


Content analysis of Focus Groups

PLWHA (Females)

This group had personal experiences of being discriminated against because of
their health status. They also felt that because people lacked knowledge of how
HIV/AIDS is transmitted there is a great deal of fear of being associated and
infected. The mood was sombre and they felt that PLWHA should be given a
great deal of support and special attention because of what they have to cope
with relating to stigma.

PLWHA (Males)

The focus groups notes responses was the same for the PLWHA(F) almost
verbatim. However the mood was one of anger because of how society treats
PLWHA. It is doubly harder for males because they are the providers for their
families and are frustrated because they cannot achieve their goals.

Drug Addicts

Very poor response from this group; however, it can be gleaned that while they
were not aware of stigma they had experience of discrimination by virtue of their
lifestyle and know that it hurts. They blame discrimination for their continued
drug habits because it helps them cope with everyday life. They believed that



                                                                              62
PLWHA should be treated equally but nothing is known of their avoidant
behaviour of PLWHA.
MSWs

This group had several accounts of being discriminated against because of their
lifestyle. They were not wholesomely aware of the word Stigma but knew that
the S&D are related somehow. They have experienced that even if they want to
branch out into a different type of work they are not able to get past the interview
stage, hence, they cannot cross the bar and remain in their current jobs. The
perception is that PLWHA should be treated with love and attention because of
the short-lived nature of the disease. They also felt that they would have no
qualms with having physical contact with PLWHA as they felt that they could also
be at risk at anytime and would want people to treat them with respect.

WSWs

The focus groups notes responses was the same for the MSWs verbatim.

Military Personnel

They have limited knowledge of Stigma but had personal experiences of being
discriminated against because of their job as soldiers. Some of the participants
were uncomfortable with discussion on treatment of PLWHA; the assumption is
that perhaps they were sufferers too.

Prisoners

The participants said that being a prisoner one is subjected to discrimination
every day and believed it to be a negative experience. Some of the participants
were positive and so there were tense moments where some broke down and
cried.

Adolescents

The group had the most descriptives of discrimination and demonstrated a
greater understanding of the word and also of who are the perpetrators. They
gave many instances of who the perpetrators are and said that sometimes
parents raised their children to discriminate.




                                                                                 63
                                    Table 2
               Personal Experience wih Stigma and discrimination


          Stigma Count Discrimination                                Count
Key                    When you are made to feel beneath               3
phrases                someone
                       Dirty/worthless                                 1
                       When shown no respect                           1
                       Name calling                                    2
                       When people don’t interact with others          1
                       Treating people in a negative way               1
                       D happens when people fail to interact with     1
                       someone because of their health
                       Treated as an outcast                           1
                       D based on skin colour , culture,               1
                       When you are different from the rest of         1
                       society
                       racial                                          1



                                    Table 3
               Personal experience with Stigma and Discrimination

           Negative                     Count Positive               Count
Key
phrases
           Name calling                                                1
           Not able to find work                                       1
           because of life style


                                      Table 4
                                    Perpetrators

          Perpetrators                                       Count

          People who are HIV – (or believe that they are       1
          because they have not been tested)
          People from all walks of life                        4
          Adults against young people                          1
          Teachers against students                            1
          Peers amongst themselves                             1
          Politicians                                          1
          Ethnic groups                                        1




                                                                             64
                                       Table 5
                           S & D re HIV/AIDS: treatment of

             Negative                       Count    positive                  Count
Key                                                  Treat with a lot of         7
phrases                                              love/attention
                                                     Like any other disease        1
                                                     Reaction should be            1
                                                     normal
                                                     More love and attention       1
                                                     especially at the end
                                                     stage
                                                     Give same treatment           1



                                     Table 6
                 Negative and Positive behaviour towards PLWHA

             Avoidant behaviour (-ive)                   Modified behaviour
                                                         (+ive)
Key          Would treat family member                   Receive special       1
phrases      who are positive well and                   attention
             give them support
                                                         Treat same way        1




                                      Table 7
               Preventive/ coping strategies and policy prescriptions
                  to reduce/eliminate Stigma and Discrimination

             Negative                                       Positive
Coping                                   Preventative
strategies

                                         Policy/legal
                                         prescriptions




                                                                                       65
TRINIDAD & TOBAGO

Introduction

HIV/AIDS has respect for neither gender nor social status, neither race nor
sexual orientation. This disease continues to have a dehumanizing effect on all.
An estimated 38.6 million [33.4 million–46.0 million] people worldwide were living
with HIV at the end of 2005. An estimated 4.1 million [3.4 million–6.2 million]
became newly infected with HIV and an estimated 2.8 million [2.4 million–3.3
million] lost their lives to AIDS.4

Stigma and discrimination intensify the pain associated with the disease. These
social ills influence behaviours so strongly that stigma and discrimination have
been recognized internationally as factors which drive the disease underground.
Various programmes and behavioural interventions have been created to
address these phenomena worldwide. Similarly, the Caribbean region, ranked as
the region with the second highest HIV prevalence rate in the world, has seen its
fair share of surveys, workshops and programmes on stigma and discrimination
as well as on other clinical and psychosocial issues in HIV/AIDS.

This study, commissioned by PANCAP, takes a different approach. While casting
its net and engaging National Researchers across six Caribbean countries
(inclusive of Trinidad and Tobago), PANCAP has sought to retrieve country-
specific information that would inform on the issue of stigma and discrimination
as it presents itself within each of the countries. Recognizing that although the
countries of the region have a somewhat integrated history, each country has its
unique culture and way of life which influences how HIV-related stigma and
discrimination will be exhibited. The participating countries include Grenada,
Guyana, St. Kitts and Nevis, Suriname and Trinidad & Tobago.

It is hoped that the information gleaned from this research exercise will produce
more effective behavioural interventions that would redound to behaviour change
and a reduction in HIV/AIDS incidence and the effects of stigma and
discrimination.


Trinidad and Tobago in Context

Trinidad and Tobago, the southernmost islands of the Caribbean archipelago,
comprises 1,980 square miles (5128km2). Thought to be an extension of the
South America continent, Trinidad and Tobago has a population of over
1,088,644 according to a July, 2005 estimate.5,6 The projected population in 2025


4
  Regional HIV and AIDS statistics and features, 2006 Report on the Global AIDS Epidemic, pg 13
5
  National AIDS Coordinating Committee – HIV/AIDS Caribbean Review Country Report
6
  CIA World Factbook 2005


                                                                                                  66
is 1,437,000 using an average annual growth rate of 2.0% between 1980 and
2000.7




      Figure 1: Population by Age Group, Trinidad and Tobago 1975-2025 (Source:
      www.earthtrends.wri.org Accessed 15.01.06)

Other demographic and health indicators illustrate that the percentage of the
populace listed as vulnerable were high, with 23% of the population under 15
years old and 7% over 65, according to 2002 estimates. 4

Figure 2 below illustrates the increasing trend in the Adult Literacy Rate (over
age 15) in Trinidad and Tobago between 1980 and 2000 of 80% and 87%.




7
    www.earthtrends.wri.org Accessed 15.01.06


                                                                                   67
Epidemiological Profile

While the human development data looks positive, HIV/AIDS has been an
undermining factor in the socioeconomic and psychosocial development of
Trinidad and Tobago.

Just as HIV/AIDS has had a devastating impact of pandemic proportions in other
countries and regions of the world, it is snuffing out the country’s most valuable
resource – its people. Professor Karl Theodore, senior researcher at the
University of the West Indies, Faculty of Economics shares, ‘the number of
HIV/AIDS related deaths in the Caribbean will more than double this decade to
30,000 and the vast majority will come from the region’s most productive and
skilled labour force.’8

He continues, ‘we know that the incidence of the disease is highest among the
15-49 age group and that the incidence among young women is on the increase
in many countries. If we add further the concealment bias, which is fostered by
stigma and discrimination, we have a situation where persons contracting the
disease will put off making their status known, possibly contributing to the further
spread of the disease.’5

At the macroeconomic level, there is the immediate impact which will be felt in
terms of productivity losses due to decreases in labour supply. The country no
longer just faces a threat that is restricted to the nation’s health, but a threat that
extends to the nation’s developmental goals. This response must draw on
stakeholders in both the private and the public sectors so that an all embracing
strategy to address this crisis may be effected.9 According to the National
Surveillance Unit (NSU), 2005 Sentinel Reports, the age group range with the
highest number of HIV positive cases per 100,000 was the 15-49 age group, the
country’s workforce.10

The most recent available HIV/AIDS Annual Report 20058 indicates that there
was a total of 1,436 new HIV positive cases (based on new HIV laboratory
confirmed cases from CAREC) in Trinidad and Tobago with a cumulative total of
15,968 known cases. HIV Non-AIDS cases (that includes HIV asymptomatic and
symptomatic cases) numbered 1,288 with a cumulative value of 10,255. The
number of recorded AIDS cases stood at 216 in 2005 bringing the cumulative
value to 5,492. HIV/AIDS mortality figures totaled 101 adding to the overall



8
  Henry, S (2005) ‘Factors Contributing to Resiliency in HIV-infected persons living in Jamaica’
(Unpublished)

9
  Health Economics Unit, The Department of Economics, The University of the West Indies (2001). Five-
Year National HIV/AIDS Strategic Plan
10
   National Surveillance Unit (NSU), Ministry of Health 2005 Sentinel Reports


                                                                                                    68
 number of deaths of 3,349 persons. The cumulative figures represents data
 collected over the period 1983 – 2005. 11

 The Trinidad and Tobago UNGASS Report indicates that ‘in the year 2004 in
 Trinidad and Tobago, an average of four new cases of HIV/AIDS was reported
 every day. The predominant mode of HIV transmission is heterosexual, with a
 male to female ratio of 55:45 with more females than males in cases reported in
 the 15-34 age group. ‘Multiple sexual partners’ is cited as the most frequent risk
 factor for HIV infection. Median age of reported HIV positive cases is 35 in males
 and 29 in females, with more than 85% of all AIDS cases reported are among the
 20-59 year olds (Source NSU). 70% of new infections among 15-24 year olds
 occur in females. UNAIDS estimates HIV prevalence rate in adult population of
 Trinidad and Tobago at approximately 3.2% and the PLWHA population is
 estimated at approximately 29,000.’12

 While significant information is lost due to underreporting and the need for a
 strengthened surveillance system, all is not lost. Sentinel reports produced by the
 National Surveillance Unit, Ministry of Health and obtained courtesy the NACC,
 indicate that there has been a 60% decrease in reported deaths due to AIDS in
 Trinidad and Tobago. The highest number of reported AIDS deaths occurred in
 the year 1996 followed by 1998, in which there were respectively 256 and 254
 deaths due to AIDS. The reported deaths in 2005 due to AIDS were 101. From
 2001 to 2005 there was a 48% decrease in reported AIDS cases with record
 highs in 2001 and then in 2003 with 440 and 418 cases recorded respectively. In
 2005, there were 216 cases of AIDS reported. A 16% decrease in reported new
 HIV cases was recorded for the period 2003 to 2005. This is evidenced in the
 fact that in 2003 the reported new HIV cases were 1,718 but in 2005 was
 recorded at 1,436. These results are in no small measure due to the several
 initiatives that have been put in place to address the issue of HIV/AIDS by the
 Government of Trinidad and Tobago and the leadership of the NACC and its
 collaborating partners.


 Key Informants Responses

Country/   Definition of Stigma
Region
Trinidad & - People discriminate against you
Tobago     - A negative feedback of a person
           - Attachment of negative connotations and feeling before the act
             comes
           - The way people are termed negative brackets

 11
    Republic of Trinidad and Tobago, Ministry of Health, Acquired Immune Deficiency Syndrome
 (HIV/AIDS) Morbidity and Mortality Annual Report 2005
 12
    The Trinidad and Tobago Report to the United Nations General Assembly Special Session (UNGASS)
 on HIV/AIDS


                                                                                                 69
Country/      Definition of Stigma
Region
              - Biasness
              - Belief system, what is happening to the other person is abnormal,
                out of the ordinary
              - Term used when people do not understand a particular problem
                what a person has, it can be at times negative or positive
              - Want to treat someone differently
              - An attitude against someone
              - labelling people or having assumptions of negative things attached
                to them
              - Being different, having something that stands out from the rest
              - The stain put on a person, group or village
              - An unpleasant feeling about your values
              - Labelling
              - That which tarnishes something, it makes it bad- developed as a
                result of no good reason
              - Broad term that separates certain people from the general
              population

 Focus Group Results

 The statistical data (Table 1) shows that 10 focus groups were conducted in
 Trinidad. The FGs were not overall consistent in asking the question of who are
 the perpetrators however one groups stated that CARE was a successful
 initiative in public education. The groups believed that S&D drives down
 acceptance of HIV/AIDS and this is inconsistent (except for the Muslim group)
 with the fact that it is just like any other disease.

 Preliminary Analysis of Focus Groups

 Transvestites
 They feel that they are an easy target for S & D. D is a by-product of stigma and
 the group that most discriminates are the female Africans and the police. They
 felt frustrated that buying condoms is still a taboo in Trinidad. The group was
 filled with anger regarding the bad treatment they are subjected to in society. A
 passionate group who is emphatic about their rights to exist comfortably with
 their chosen lifestyles. Compassionate towards PLWHA as many of their friends
 have died from the illness.

 MSW

 This group voiced that Stigma is a term with broad meanings. For example, one
 can be stigmatised because one is dressed in ‘drag. Discrimination then is a by-
 product of Stigma, for example when people use bad comments to denigrade


                                                                               70
someone. The worse perpetrators are the police through extortion, false
imprisonment and humiliation. Numerous personal experiences of discrimination
were recounted and it came in the form of both verbal name calling e.g. ‘buller
man’ and; physical e.g. bottle and water pelting. There is no state protection in
the form of police intervention. This group stated that they have had to turn to
the use of weapons for protection against S& D and one person said that they felt
better protected by the police when working in Barbados. They want T & T to
legalise same sex marriages so that the society can accept their choice of
lifestyles. They were advocates of better treatment for PLWHA as it is a disease
that could afflict anyone. However, they were against having special treatment
centres as this in itself increases S & D. They also want good leadership from
the Prime Minister because they are human as anybody else and contribute to
their society, e.g. pay their taxes.

The Moslem Youth Group

This part of the report is deliberately long because of some of the interesting
facts that it presented. The group was vociferous in its believe that the teaching
of the Qu’ran was the answer to the reduction in the spread of HIV/AIDS because
of its moral teaching. Generally they thought that Stigma is a negative action and
bad thing to happen to someone. Many accounts of personal experiences of S &
D particularly because of their religious beliefs and it meant ‘putting someone on
the spot’ or ‘showing up someone’s faults’. Discrimination on the other hand is
being scorned and not accepted in society. Just like the above groups
discrimination is a by-product of stigma. Great deal of examples give e.g. lack of
access to employment because of their dress habits e.g. wearing hijab and
kemar. Participants were angry and frustrated due to experiences of religious
discrimination.

General heated discussions about international S & D against Moslems a
religious race and their perception of a ‘just war’ against the rest of the world.
They saw themselves in the wider international war against S & D e.g. in the
Saddam/Iraq situation and linked it to the fact that rest of the world readily accept
homosexuality and infidelity but not them.

They voiced that HIV/AIDS is a homosexual disease and equated it to the
widespread practice of sex before marriage that is prevalent in many societies.
In the Qu’ran, this act is punishable by 100 strokes of the whip therefore
contracting AIDS should be a punishable offence. PLWHA should not be treated
the same because they are not able to perform certain functions that others can
do, e.g. be a surgeon.

Laws should be in force concurrently, one for those that deliberately infect
through unprotected sexual intercourse and those that have been infected should
have different rights. When it comes to health care, participants agreed that
there should be no special provisions made. It was obvious that the group was



                                                                                  71
very concerned about the possibilities of being infected by HIV/AIDS through
transfusion, malice, and mistakes therefore there is no trust of the medical
system nor of PLWHA. Again, reacted negatively to accepting PLWHA or
homosexuals and recorded a proportion amount of the avoidant behaviours
mainly because of fear of infection even though they had known people who had
died of the disease; however, had less contributions to make regarding positive
behaviours towards PLWHA. This supports the statements of ignorance and lack
of education of society that the other groups mentioned.
WSW

Many explanations and accounts of S & D, there were long discussions about
society and how men are the main abusers, and how the bible being the main
authority on how people should live their lives being a negative influence in their
lives. Sufficient empathy is shown towards PLWHA, one participant stated that
they would retreat into the jungle if there ever contracted the disease and get
themselves into a ‘frenzy’ because they would not be able to cope with the
stigma attached to the disease. The participants also stated that some PLWHA
gain support from their family while other do not.

The solution is to make HIV/AIDS a public-friendly disease by conducting
workshops because it is like any other disease like diabetes.

URP Women’s Group

The participants admitted to not fully understanding S & D but offered some
examples as being shunned and discrimination as not being accepted.
Perpetrators are Jehovah Witnesses and Seventh Day Adventists. There were
long, drawn out discussions about how different religious groups discriminate
against each other. They were aware of the unfair treatment of PLWHA
particularly as they lived in small communities where people know of each other.
Therefore, where some people had sympathy towards PLWHA, the public did not
accept this behaviour and frown on it and word easily gets around about people’s
business.

Generally, society lacked understanding.          Even though they were not
perpetrators of S & D, because of their function as care-givers (indeed, some of
the women had to nurse spouses and children who had died of AIDS), they were
aware of the debilitating effects of the disease and recounted incidences of ‘two
two in a grip’ (referring to some nasty habit of an AIDS patient). There admitted
that they tended to avoid these types of people because the end stage of the
disease is particularly debilitating. This group had been hurt by the S & D that
members of their family who had the disease had suffered and made a direct link
between the poor treatment that patients had received at the hands of the
medical profession. There were accounts of how nurses shunned patients and
put them in separate rooms and to use separate bathrooms. However, they had
scorn towards the women how had deliberately infected others and suggested



                                                                                72
that although they were not reticent about having sex with an infected person
they would (after the initial shock of the bad news that their partner’s had the
infection had worn off) protect themselves by putting on 10 condoms at one time!

As solutions they offered that parents should educate their children about sex
and use of condoms, and educate the youth through the use of media that are
attractive to them i.e. cartoons, music and sports.

Women Sex Workers

Stigma is synonymous with name calling such as ‘dyke, whore, bitch, darkie’.
They stated that it makes them feel less than the ‘white line on the road’ and
‘dogs’. They were emphatic that their trade is as old as the bible and they
provide a valuable service to society, married women better watch out! Although
not everybody discriminates there was emotional account of molestation and how
one girl was raped by her stepfather (not sure at what point in her young life or
how it influenced her choice of trade). They were also emotional about the poor
treatment of PLWHA signalling a direct link between their experiences and those
of the former group.

In contrast to the Moslem group, they accepted that contracting HIV/AIDS can be
an error of judgement, how poverty played a part in the whole scenario, and how
this is not helped by the ‘small-mindedness of Caribbean people’. They
prescribed some positive solutions e.g. regular use of condoms, abstinence and
regular testing.

PLWHA

This group had a serious countenance, was not at ease, felt uncomfortable and
refused to give any names or aliases. They described Stigma as the presence of
inequity, not having the right to live, denied benefits and ostracised by society.
They recounted personal experiences of being denied their human rights and
having to deal with the many challenges they face. For example, some of their
experiences were with the medical profession where they were segregated from
other patients to use separate rest rooms. They have been treated poorly by
doctors and nurses. They attributed the spread of the disease to the S & D by
these professional who should know better.

It seemed that this group were prepared to fight to live and demanded respect
and love just like everybody else. Particularly, as HIV/AIDS, knows no
boundaries and can afflict both high and low society as well as young and old.
They were a group with a positive outlook and advocated that PLWHA can still
have positive outcomes. Self preservation was the order of the day that
demanded the assertion that it all starts with the action of non-self discrimination.




                                                                                  73
For solutions they suggested they do not want special clinics as this was a form
of exacerbating the problem of S&D. They also need the protection of the law as
S&D hurts more than PLWHA.

Life Guards

Many examples of discrimination were given due to the nature of their jobs. An
example was given where a politician was a perpetrator of S&D. Sympathy for
PLWHA is strong and they suggested that S&D can trigger suicidal tendencies.
However, this sentiment is not translated into their personal treatment of PLWHA
because they would be reticent to rescue and provide first aid treatment to
someone they knew had the disease, however, they would be professional
enough to attempt to do their jobs using the right instruments.

Some insisted that people who deliberately infect others should be electrocuted.
Also public education and equal treatment should be given to victims.

Taxi Drivers Association

Stigma can be positive and negative, They restricted examples to strong feelings
of how religion, politics and unequal treatment exacerbate S&D. They are not
comfortable with the phenomenon of AIDS because of its mode of transmission.
Despite this they would treat PLWHA humanly. They have a negative view of
people with full blown AIDS because it is a health risk. Although they are
reluctant to discriminate, it will be necessary to do so in circumstances where
people present wounds, sores and boils from full blown AIDS. They recounted
stories where nurses have seen maggots in patients mouths. They would not
have any personal contact with anyone at the end stage of the disease.

Patients with full blown AIDS should not be seen in public, rather they need care
and love in special clinics because of their threat to society. There was a
consensus from the participants that they should be picked off the streets just like
stray dogs with rabies! Treatment of PLWHA should be tailored to the stage of
the disease in the first place and there is the sense that once contracted there is
no hope.

Education is a solution to reducing S&D however, there is no cure for ignorance!
This group had a real struggle and were frustrated with not being able to come
up with tangible solutions to deal with a social problem.

MSM

The participants related S&D to personal experiences rather than the technical
meanings. Their experiences stem mainly from people in their community which
made them feel segregated from mainstream society. They also saw S&D in a
continuum meaning that where stigma ends discrimination starts. Participants



                                                                                 74
were emotional, angry, confrontational, gesticulating in relating their experiences
of S&D. Some admitted to having sexual relations with PLWHA. They believed
that S&D stems from the slavery mentality of oppression and believed that
education is not the answer to acceptance.

MSW (PLWHA)

This group stated that S&D are interrelated and it’s a ‘horrible and dreadful thing
to happen when being called ‘buller man, faggot’ etc, therefore S&D are negative
influences. They identified personal experiences of being gay and LWHA as
classic situations where S&D occurs. Culture, fear, religion are the drivers of
S&D and are dehumanizing. They also identified 3 forms of discrimination:
institutionalised, social and internalised. The group admitted to lying on forms to
get certain insurance and on other applications such as VIS forms to gain access
that would otherwise be denied. There was also a long discussion on how there
is discrimination in their community and how they need to address this first. The
church teaches people to discriminate and politicians also need to be educated
about AIDS. Some err on the side of caution and do not reveal if they are
positive because people are too emotional and react badly/ They want to
‘collapse thinking that the person is going to die in the morning’. Participants
agreed that they don’t live in a safe environment in Trinidad &Tobago. One
participant said that his support group was his family. They live with the fear of
infecting others and being discriminated against by their peers. They therefore
find it difficult to get into a relationship. Even though being open can cause
problems it eliminates a lot of stress, some resort to masturbation and loneliness.

Some of the solutions offered was to change policies and laws and teach people
to understand. Also a new image of HIV/AIDS is needed as part of the
educational drive. Surprisingly, one participant suggested a network so that
newly diagnosed people can be identified (for positive reasons) to stop them from
infecting others.

Tobago Youth

This group was made up of 2 people in their 40s, 3 in their 30s and 1 in their 20s.
There was nothing unusual with their responses and seemed to be empathetic,
however, the line of questioning did not bring out the much avoidant behaviours,
except those perpetrated towards them.

Tobago Beach Boys

This group did not show any understanding of S, not did they see the difference
between S&D. Similarly, a majority of the group were not aware of the difference
between HIV and AIDS. A participant revealed an alarming ignorance stating
that black people were the race with HIV/AIDS and therefore he only engaged
sexually with white people! Most of the outspoken participants teased and joked



                                                                                75
about other members. Underlying this was the perception that some were
uneasy about coming into contact with PLWHA.             They felt a sense of
hopelessness that nothing can be done to remove S&D while some suggested
fighting against ignorance. In spite of this several members were engaged in
risky behaviour of only sleeping with white people and expressed discomfort with
wearing condoms.

Generally, the focus groups in Tobago were not as strong as the ones in Trinidad
because the line of questioning did not bring out much avoidant behaviours
although there was a sense of uneasiness particularly with the teasing and
bantering that was going on in the meetings. This limited the depth of feelings
that could be extracted from the discussions.

In all, seven (7) tables were created around themes under the following
headings:

Table 1:     Focus Group Statistical data
Table 2:     Meanings of Stigma and Discrimination
Table 3:     Personal experience with Stigma and Disrimination
Table 4:     Perpetrators
Table 5:     Stigma and Discrimination re HIV/AIDS
Table 6:     Negative and Positive behaviour towards PLWHA
Table 7:     Preventive coping strategies and policy prescriptions to
             reduce/eliminate stigma and discrimination




                                                                             76
                                 Table 1
                        Focus Group Statistical data

Groups          Males          Females           Ethnicity      Total
Transvestites                                    6 Africans       7
                                                 1 mixed race
TAXI Drivers    N/K            N/K               3 Indians       7
Assoc                                            4 Africans
Life guards     9                                N/K             9
MSM             6                                N/K             6
(adolescents)
Muslim youth    N/K            N/K               N/K             7
WSW(1)                         8                 N/K             8
MSWs            6                                n/k             6
WSW(2)                         4                 2 Africans      4
                                                 2 mixed
                                                 (Spanish,
                                                 Indian
                                                 ‘Dougla’)
URP Women                      8                 7 Africans      8
                                                 1 Indian
PLWHA           N/K            N/K               Mixed groups
                                                 of male &
                                                 female
MSM (PLWHA)     6                                4 African       6
                                                 2 Indian
Tobago youth    6
Tobago beach    9                                                9
boys




                                                                        77
Content analysis of Focus Groups

                                    Table 2
                       What is Stigma and |Discrimination

           Stigma                         Count   Discrimination            Count
Key        Treated unfairly/unequally       4     Not worthy/not              1
phrases                                           accepted
           Fear                             2     Racial /skin                 6
                                                  colour/social status
           Branding/staining/labelling      6     Poor                         2
           Outcast/shunned/scorned          2     Status in society            2
           Condemned/ostracised             5     Different opinion e.g.       3
           because of dress/walk                  politics/religion
           Negative identity/feeling of     7     Community/family/            5
           having less value to society           social exclusion
           Life style patterns not          4     Negative label               11
           acceptable to general                                            (Eleven)
           society
           Name calling                     3     Show favouritism to          1
                                                  some
           Looking at someone as no         2     D based on                   3
           good                                   appearance
           Not show respect/scorn                 Name calling                 4
           When people gossip about         2     Scorn due to ailment         2
           you
           Making an untrue statement       2     Different treatment/not      8
           about someone                          equally
           Denied benefits available to     1     D occurs when you            1
           everyone else                          are ignore
           Being persecuted                 1     Based on religion and       31
                                                  politics, culture, fear
                                                  A physical act that          5
                                                  happens after stigma
                                                  occurs
                                                  Being scorned                1
                                                  Being separated              1
                                                  D happens after S            1
                                                  Being made to feel >
                                                  a person
                                                  Persecution                  3
                                                  Prejudice and neglect
                                                  Lack of cultural
                                                  education




                                                                                   78
                                   Table 3
              Personal experience with Stigma and Discrimination

          Negative                    Count Positive                      Count
Key       Death sentence/suicidal      21   Normal people who need      11(eleven)
phrases                                     positive
                                            reinforcement/support
          Show anger as a               5   Just like other diseases        8
          response to S&D
          Pity them/kill them           2    Respect                        3
                                             Understand illness             1
          Not human/denied H            3    Speak up for rights            6
          Rights
          Negative treatment may        2
          encourage suicidal
          tendencies
          Historical perceptions of     1    Don’t segregate                2
          doom and gloom/myths
          perpetuated
          Pray                          1    Positive actions: Love,        9
                                             respect and socialise
                                             with them
          Being different               1    Care-givers should take        1
                                             precautions (use of
                                             gloves)
          Based on appearance           1    Parents talk to children       1
                                             Use condom                     1
          Racial                        3    No specially named HIV         2
          discrimination/religion            AIDS clinics or doctors
          Being dark skinned            3    Equal treatment               10
          Insensitive medical staff     7    No specially named HIV        6
                                             AIDS clinics or doctors
          Treated unequally. no         3    Always use a condom            2
          equity as have no human
          rights
          Place them on an              3    Don’t segregate                3
          island/hide/segregate
          Stain on whole life           1    Internalised                   1
                                             discrimination where one
                                             makes choices
          A homosexual disease          1
          Feelings of hurt             10
          Lack of job opportunity       1
          Pass laws to stop people      2
          maliciously spreading HIV
          Hate partners for being       2
          promiscuous
          Keep quite about illness      2
          Dehumanizing                  2
          Cannot take out               1


                                                                                79
  Negative                      Count Positive       Count
  health/home insurance or
  visa
  Doctors charge more if           1
  they are aware of LWHA
  Medical profession refuse        1
  to treat you


                                Table 4
                              Perpetrators

Perpetrators                                 Count
Religious people/churches                      4
Family                                         5
Adolescent boys                                4
Indo-Guyanese                                  1
Rich/high society people                       1
Black on black people                          1
PLWHA/ among themselves                        2
Gays against PLWHA                             2
Uneducated/uninformed                         16
Medical staff                                  6
Black women against transvestites
People in positions of authority e.g             2
politicians
Musicians
Self discrimination                              1
Media                                            2
Inter-island D                                   1
Whites                                           1
People that are in the majority




                                                             80
                                   Table 5
                    Stigma and Discrimination re HIV/AIDS

          -ive                           Count   +ive                       Count
Key       Exile those who deliberately     1     Need good health care        5
phrases   infect others
          Afraid of Saliva contact/any     1     Need Adequate                3
          form of contact                        medication/treatment
          Family/social exclusion          1     Be open minded               1
          Deny/fear them                   1     Practice Christian           1
                                                 doctrine of care
          promiscuous living : deserve     1     Special treatment/care       4
          consequences
          Talk to but be afraid of         1     Treat equally no special     8
          physical contact even care             treatment
          givers
          Afraid of association with       3     Confidentiality needed       3
          victim                                 for PLWHA to be honest
                                                 & get tested
          Cannot trust PLWHA               4     Give support                 4
          Monitor PLWHA                    1     Treat with                   1
                                                 respect/dignity
          Shocked/surprised                3     Treat like human beings      8
          Avoid testing when pregnant
          Segregate                        1
          Build/Attend Special             2
          institutions
          Shouldn’t be seen in public      1
          Death sentence                   1




                                                                                  81
                                   Table 6
               Negative and Positive behaviour towards PLWHA

          Avoidant behaviour (-ive)          Modified behaviour
                                             (+ive)
Key       Not use of same                2   Need better health care   4
phrases   utensils/personal
          effects/space
          Afraid of Saliva contact/any   5   Need Adequate             4
          form of contact                    medication
          Family/social exclusion        1
          Deny/fear them                 1   Willingness to accept     3
          promiscuous living : deserve   3   Show kindness             7
          consequences
          Talk to but be afraid of       1   Be cautious with their    3
          physical contact even care         care by medical
          givers                             professions
          Cannot trust PLWHA             3   Practice                  6
                                             Christian/Moslem
                                             doctrine
          Shocked/surprised              3   Equal treatment           4
          Victim becomes a recluse       2   Would buy their food
                                             based on environs
          Lose of employment             2   Give support/care         6
          Keep off the streets/alert     1   More education            3
          authorities
          Treat with caution             3   Family support            3
          PLWHA avoid coming out         5   Get tested before a new   4
          for fear of D                      relationship
          No intercourse with PLWHA      4   Intercourse with PLWHA    1
                                             use condom
          People afraid to even wipe     1
          off sweat




                                                                           82
                                          Table 7
                   Preventive/coping strategies and policy prescriptions
                                to reduce/eliminate S & D

             Negative                                   Positive
Coping                                  Preventative    Safe sex practices/ use           6
strategies                                              condom
             Sufferers become      1                    Acceptance                        1
             vindictive/spiteful
             Feel scorn towards    2                    Socialisation/bring all groups    1
             non infected                               into contact
                                                        Disclosure/‘Coming out’           3
                                                        (help others understand)
                                                        Buy life insurance                1
                                                        Caregivers talk to children       2
                                                        about issues
             Secretive & lack of   1                    Parental responsibility to set    2
             honesty between                            good principles
             partners
             influence of Music    11                   Responsible behaviour             1
             videos/ lyrics                             among PLWHA/take
                                                        precautions
                                                        Support from family               1
                                                        Have a friend to talk to          1
                                        Policy/legal    Public Education/                10
                                        prescriptions   School curriculum
             girls to get          1                    Sex after marriage               13
             pregnant to keep
             partner
             associate with                             Equal access to social            1
             drug                                       benefits
             dealers for money
             No physical           2                    Group discussions in              2
             contact                                    community/outreach by
                                                        PLWHA
             Some sufferers        1                    Pass laws/policies to protect     6
             are over-sensitive                         minorities
             Register &            2                    Media sensitisation               3
             publicise PLWHA
             Let women take        1                    Get tested when pregnant to       1
             charge of safety                           safe guide child
             precautions i.e.
             use of condom
                                                        Free/mandatory testing            3
                                                        Need support groups as in         1
                                                        other developed countries




                                                                                         83
GRENADA

Introduction

HIV and AIDS Epidemic in Grenada13

The Ministry of Health estimates the HIV and AIDS prevalence rate to be less
than one percent in Grenada.14 From the first case of HIV diagnosed in 1984
through November 2006, 301 cases of HIV and 207 cases of AIDS were reported
to the Epidemiology Unit, Ministry of Health. Males represent 64.5 percent of
diagnosed HIV cases in Grenada. Except for the 15 – 24 age group, males are
diagnosed with HIV at higher rates than females in all age groups of sexually
active Grenadians. It is important to note however, that females account for 62
percent of all persons living with HIV in the 15 – 24 age category. Close to 60
percent (57.1) of all HIV cases occur in the 25 – 44 age group. Approximately 4
percent of all HIV cases and 3 percent of AIDS cases occurred in persons under
15 years of age.

One hundred and sixty four (164) persons have died of AIDS related causes
since 1984. Of reported deaths, 71 percent were between the ages of 15 – 44,
while 3 percent occurred among persons less than 15 years.

Screening tests conducted in 2005 revealed a seroprevalence rate of less than
0.1 percent among pregnant women. However, results might not reflect a true
magnitude of the epidemic due to the potential for pregnant women to access
pre-natal care outside Grenada, and the fact that the test requires voluntary
compliance among women.

The Ministry of Health through the National Infectious Disease Control Unit
(NIDCU) is committed to ensuring that all HIV and AIDS clients in Grenada,
Carriacou and Petite Martinique receive appropriate medical care and treatment.
Free treatment and care is available within the public system at the NIDCU base
at the General Hospital. In the rapid scale up to ensure effectiveness and
efficiency in service delivery, Grenada is working with several international and
regional partners. These partners include the Global Fund to Fight AIDS,
Tuberculosis and Malaria (GFATM), the Clinton Foundation and the Pan
Caribbean Partnership Against HIV/AIDS (PANCAP). Furthermore, the World
Bank has invested considerable funds through its HIVAIDS Prevention and
Control Programme to assist with the augmentation of care and treatment
services.

Regionally, with the assistance and guidance of the Pan Caribbean Partnership
Against HIV/AIDS (PANCAP) and the Caribbean HIV/AIDS Regional Training
Initiative (CHART) network, key capacity needs for providers of HIV and AIDS

13
     Government of Grenada, 2006. Draft National Strategic Plan for Health 2007 – 2011.
14
     Government of Grenada, 2006. Draft National Strategic Plan for Health 2007 – 2011.


                                                                                          84
care and treatment are being addressed in the OECS region. Furthermore, with
assistance and guidance from CHRC, important care and support indicators will
be monitored consistently in the region.15

Selected Health and Demographic Characteristics

The average life expectancy in Grenada is 70 years, with women having a longer
average life span (72 years) than men (68 years).16 Infant mortality in 2004 was
reported at 13.4 deaths/1000 live deaths. Male infants died at a slightly higher
rate that female infants, with infant mortality rates of 14.0 deaths/1000 live births
for males and 12.8 deaths/1000 live deaths for females.17 The leading reported
causes of mortality among children less than 5 years of age in 2000 were:
congenital anomalies of the heart and circulatory system, hypoxia, birth asphyxia,
other respiratory conditions, slow fetal growth and fetal malnutrition.18 The
island’s total fertility rate is around two children born per woman. Grenada’s
population growth is approximately 0.26 percent a year.19 Currently, 33.4 percent
of the population is in the 0-14 age range, 63 percent is in the 15-64 year age
range, and about 3 percent is 65 years old and older.20 Approximately one third
(32.1 percent) of all Grenadians live in poverty, in that their annual expenditure
was less than EC$3,362, the cost of meeting their minimal food and other
requirements.21 The net external migration rate per year is – 12.59 migrants/1000
population.22

In 1994, the three leading communicable infectious diseases were related to
fecal contamination and poor personal hygiene. The only vector-borne
communicable disease of any significance in Grenada is dengue fever, with 84
reported cases in 2002. Leading causes of death from 1998-2002 were diseases
of the circulatory system; malignant neoplasms; diseases of the respiratory
system; and certain infectious and parasitic diseases. Deaths as a result of
accidents and injuries have doubled during this period and is second to deaths of
the circulatory system which have increased four-fold from 1989-2002.23




15
   CHRC, 2005. Caribbean Indicators and Measurement Tools (CIMT). Available from the Caribbean
Health Research Council. Available at http://www.chrc-caribbean.org/CIMT.php. (accessed February 28,
2006).
16
   Government of Grenada, 2006. Grenada National Strategic Plan for Health 2007-2011.
17
   Epidemiological Unit, Ministry of Health - Grenada, 2006. Infant mortality rate by gender from 2000 –
2004 in Grenada.
18
   PAHO. 2005. Country Health Profile. Available at http://www.paho.org/English/DD/AIS/cp_308.htm.
(accessed December 10, 2006).
19
   CIA. 2006. CIA World Fact Book (2006 est.) Available at
https://www.cia.gov/cia/publications/factbook/geos/gj.html. (accessed December 10, 2006).
20
   Ibid
21
   Kairi. 1999. Poverty Assessment Report, Grenada Volume 1.
22
   CIA. 2005. CIA World Fact Book (2006 est.)
23
   Government of Grenada. 2006. Draft National Strategic Plan for Health, 2007 – 2011.


                                                                                                       85
Diseases of the endrocrine and digestives systems ranked second in 2003,
second only to malignant neoplasm.24

National HIV and AIDS Program

In 2002, the Government of Grenada received a World Bank loan of US$6.04
million to facilitate implementation of an HIV/AIDS Prevention and Control
Project. The National AIDS Programme (NAP) underwent major organizational
changes to support implementation of this initiative. The Office of the Prime
Minister assumed key responsibility for the NAP, and facilitated its coordination
and implementation through establishment of a National AIDS Council and the
National AIDS Directorate. The Council chaired by the Minister for Health is
comprised of a multi-stakeholder group inclusive of representatives from the
private and public sectors, civil society, and youth. The National AIDS Directorate
staffed by a Director, a UNDP funded programme assistant, a government
funded intern and an office assistant provides the human resource capacity to
ensure implementation of the NAC policies.25

The Government of Grenada in an effort to scale up its HIV and AIDS
programme developed a National Strategic Plan (NSP) for HIV/AIDS for the
period 2006 – 2009. The main goal of the plan is to:

        “To reduce the risk of HIV/AIDS to the general public while
        nurturing and developing a caring society where people living with
        and affected by HIV/AIDS will have adequate and appropriate care
        to facilitate economically and productive lives consistent with
        national development priorities.” 26

Three strategic areas were prioritized to ensure effective implementation of the
NSP. These include (1) Civil society and line ministries response, (2) Health
Sector Response and (3) Strengthening Institutional Capacity for Programme
Management.

Testing for HIV can be accessed from any public health facility in Grenada. In an
effort to promote voluntary testing among the populace, the National AIDS
Directorate and the NIDCU hosted its first National Voluntary Counseling and
Testing (VCT) day on November 30, 2006. Testing services were made available
in a number of public locations across the country. The NAP through the NIDCU
has facilitated VCT training for a number of health professionals and community
members in all health districts in the tri-island state. The Caribbean Epidemiology
Centre has recently trained two local professionals in the rapid HIV testing


24
   Epidemiological Unit, Ministry of Health - Grenada, 2006. Infant mortality rate by gender from 2000 –
2004 in Grenada.
25
   Ibid.
26
   Ibid.


                                                                                                       86
 protocol with the objective of implementing this testing system at the national
 level.

 Analysis of the specimen for HIV is conducted at the public laboratory located at
 the General Hospital. Confirmation of a positive result is done by CAREC which
 can take up to 2 weeks.

 The Epidemiology Unit in the Ministry of Health is responsible for the
 Epidemiological Surveillance system in Grenada. The Unit is staffed by an
 epidemiologist, a surveillance nurse, community health nurses, an environmental
 health officer, health promotion specialist, head of the Ministry’s health
 programmes and other co-opted members. The Ministry operates both a passive
 and an active surveillance system. Hospitals, health centres and medical stations
 submit weekly update to the Epidemiology Unit as part of the passive
 surveillance protocol. Additionally, as part of the active system, the
 epidemiologist and head of the Ministry’s health programmes visit the collecting
 stations and solicit data. Data analysis and interpretation is undertaken by the
 Epidemiology Unit, and is disseminated on a weekly basis to CAREC, PAHO and
 WHO. Appropriate feedback to support effective prevention and control of
 HIV/AIDS and other diseases are relayed to the Ministry of Health by CAREC.

 Funding for the National AIDS Program is provided through the World Bank loan
 and a number of regional and international agencies including the Pan American
 Health Organization (PAHO), Caribbean Epidemiology Center (CAREC), Clinton
 Foundation, the United Kingdom Department for International Development
 (DFID), the United Nations Development Program (UNDP), the Pan American
 Partnership Against AIDS (PANCAP), the Caribbean Regional Network+ for
 people living with HIV/AIDS (CRN+), the United Nations Children Fund (UNICEF)
 and the Global Fund.


 Key Informants Responses

Country/      Definition of Stigma
Region
Grenada       - Being disadvantaged, being alienated
              - When someone feels that they are above you and don’t want a
                thing to do with you
              - 1st thing against-ridicule
              - Something that is not desirable, it is linked to discrimination
              - A sting, a reproach to you, a label
              - A stereotyping attaching a stering to a certain group, certain
                persons, certain people in general




                                                                                  87
Focus Group Results

Grenada including Carriacou, resulted in interesting responses from the focus
groups. Due to the formats of the facilitator, it was not possible to chart or
quantify these responses but they were sufficiently detailed and copiously
documented. This therefore has allowed a narrative format which demonstrates
the contradictions of small communities, even though there appear to be
comparatively high narrative of HIV/AIDS.


           Groups              Male          Females       Total
           Affected Children   0             3             3
           PLWHAS              3             9             12
           Private Sector      2             4             6
           Public Sector       2             5             7
           Adolescent Males    10            0             10
           Adolescent          0             9             9
           Females
           Prisoners           6             0             6
           TOTAL               23            30            53
           7 Focus Groups


Adolescent Males

Although quite informed and articulate about HIV/AIDS, there was little doubt that
this group was much more sympathetic to wives and husbands, and even CSWs
who were HIV+ than to MSMs. Throughout the focus group there were disdainful
comments about the MSM community.

Definition of S & D: These were confused although the group spoke about
“judging people”, “coming down on you in a negative way” or “being degraded”.
Five participants seemed rather confused about the general definitions. With
regard to experiencing S & D, only one participant spoke about having
experienced discrimination due mainly to dressing like a gang member. “If you’re
on the block the police would pull up and pick you up saying “why you sporting
scarf for?” “You in a gang?” There was also reference to being picked out or
being discriminated against if you wore a red scarf to school since this depicted
you were a member of the Blood Gang.

Perpetrators: Most of the group identified “church members as being the most
discriminating followed by the Police and “high class people”.

Treatment of PLWHAS: All of the groups felt that PLWHAS should be treated
fairly but they emphasize that they should be given instructions regarding
prevention of transmission. Here they were emphatic that they would be more
sympathetic and pitied wives and even CSWs (although they should be


                                                                               88
checked), but felt very strong that the MSM group was different and should be
treated differently. “I would want to kill the homosexuals who contracted the
virus, but pitied the wife or husband who got it because of infidelity”.

With regards to employing PLWHAS, they all felt that they should be given work,
but when questioned further several members of the group identified “office work
with little contact to people”. As for treatment by the health sector, they agreed
that they should be treated equally, although one suggested that they should wait
until they are dying and put them on the Ministry steps.

If it were a family member who were HIV+ seven of the eight said they would
treat them the same although they would not be as close to them as before,
“cause don’t want to ketch AIDS!”. The entire group expressed the feeling that
persons who are HIV+ should not be handling food.

Their recommendations for the reduction of S & D included: train people to come
out and tell details, government should care more about them but be careful, and
also there should be a Hotline to assist people who wanted to get info on
HIV/AIDS.

PLWHA

This group was very intense and even emotional in their participation. They
identified their biggest problem as non-confidentiality and they spoke
passionately of many experiences related to problems this had caused them and
their families.

Definitions of S & D: These were a bit confused ranging from something that
brings you down, “a sting”. Here they referred to the discrimination of certain
Health Sector staff who preferred to threat non HIV persons as opposed to those
who were HIV +. They were quite definite about discrimination “you are no good.
You are a vagabond, outcast, pushing you away because of race, sex, age and
how you look”.

Perpetrators: Self reporting from this group of PLWHAS revealed that
discrimination at home and in the village “and all the way when I went into shops”
was prevalent. There were several impassioned accounts of discrimination by
persons in the work place and one account of a teacher requesting that the son
of a PLWHA be taken out of her school.

      “The Ministry of Health, the one in Grenada, I have no
      confidence in that Ministry of Health……..I went to donate blood
      and was tested and news went out before I heard the results”.
      “It was very bad for me, very, very bad.”




                                                                                89
There was also an incident also with the doctor going to her daughter and telling
her. The daughter was put in a children’s home. Respondent from Carriacou, “In
Carriacou the place is so small, you drop a word here, within 5 minutes the whole
a Carriiacou know you business.” The respondents were particularly critical of
the nurses and there were several complaints of health care workers carrying
news to villages and this had caused a great deal of grief. “Suicide was not for
me but there was one time early in my diagnosis that I wanted to die.”

Prisoners

This group was comprised of six males in their twenties. There was good
participation with concerns mostly about food handling, employment and sexual
relations with persons who were PLWHAS. Otherwise, they seemed rather
reticent to go into too many details.

They did not seem to connect to the term Stigma and Discrimination, and
therefore, there was some dialogue in order to get them to understand the
terminology. As they explained it, “this has not been a popularly used cultural
term”.

It would appear that the session was either short or that the inmates were
somewhat reluctant to discuss HIV/AIDS among their own peers due to the
problems it may cause for them later. Thus, despite an interest and some
superficial responses, it did not go into details or allow for a thorough report.

Adolescents (female)

This group was particularly alert and articulate, though they demonstrated what
can only be called “herd mentality” by agreeing altogether with one opinion. Their
main concern was infection from the MSM groups and they reflected no
sympathy for those of the MSMs who were PLWHAS. On the other hand, they
sympathized with others who might have been infected.

Definitions of S and D were good and educated, though somewhat academic.
They gave examples, and identified young boys and “Christians” as those people
who were most prone to be perpetrators of S and D.

With regard to the treatment of PLWHAS, again thought that they should be
treated equally, but not MSMs “Batty Man, that’s nastiness…”. Discrimination
against the MSMs was reflected strongly with references to the Bible “The Bible
says that man to man is an abomination…”. If it was a woman however, “I would
excuse her”. Even CSWs were to be sympathized and treated fairly. When the
subject came to employment, once more, there was the opinion that PLWHAS
should be given work but nothing to do with food.




                                                                               90
Demonstrating a kind of dissonance, one girl said that if she knew a PLWHA, he
should be treated fairly “….but I would feel uncomfortable to sit by him because
he has things on his skin….so the time I get up on the bus and I see them – I off!
Because I trying to protect myself.” They expressed disgust and spoke of “Move
Away!”

If it were a family member, then they said they were not sure “sometime you just
angry with the person…..”. Here, once more there were confused responses of
uncertainty regarding their reactions to such a situation.

PRIVATE SECTOR (FEMALES 4 MALES 2)

There was a fair level of participation, and the issue of employment of PLWHAS,
naturally, resounded with this group and stimulated much discussion. It was
observed that perhaps, there was reluctance to speak in a group of their peers.

Stigma and Discrimination: This was understood, although discrimination
seemed to be the most familiar, and there were several accounts of personal
experiences mainly based on race, not only in Grenada but overseas, and in the
Caribbean.

The group generally agreed that PLWHAS should be treated fairly and even
compared to the inequality of treatment or discrimination as that which was
prevalent in the early days of cancer “The Big C”. Except, of course, “what makes
the difference with HIV/AIDS – you think homosexuality, you think some sort of
promiscuity…or this person is a bad person because they contracted
HIV/AIDS…so you treat them with disdain and scorn…..When I shake your hand
I know that I cannot catch it, but something inside of me says let me wash my
hands anyway.”

Interestingly, religion was brought into this aspect and reference to “judging from
a religious standpoint, based on the scriptures, homosexual behaviour – that’s a
negative to me. It’s different if a husband brought it home to his wife…you would
have more sympathy.”

Employment: There were differing opinions here. For example, one manager
had many rational arguments why PLWHAS should not be employed, ranging
from lack of productivity, to sick leave and costs of medical insurance. Then
those from the Hotel Industry said that had to be differentiated because you have
to be careful since you dealing with foreigners. Similarly, there was a rage of
responses related to “if you had a family member who was HIV+”. At the same
time there seemed to be some interesting experiences shared with the group.

      “Before you get into that, I just have a question, if anybody have
      encountered anybody with HIV. Because the thing is, I have experienced
      with two persons and its totally different when you actually meet them. I
      went to this seminar at Coyaba with the same PANCAP and there were


                                                                                  91
      about 20 something persons and they say HIV has no face and the most
      handsome guy in the whole symposium, he was talking and sharing
      experiences of how he go to certain committees and stuff. We were
      together having lunch and he said, “do you mind if I taking my pills?” So I
      was like, “you go ahead” because it didn’t strike me that he was. I said,
      “what are you taking all these pills for”, and he said, “Cus I’m positive”,
      but it still didn’t bring home to me that he was HIV positive. And he said,
      “I’ve been for the past 13 years”, and you don’t even care where they got
      it, because at that time, you’re not interested, you just look at the person
      and he look so good, and I’m like, “how you coping”. I was more
      interested in “how you sleeping”. Now you never care how they got it”.

And again:

      “But we even, at GDB, we did an afternoon session when this HIV
      PANCAP scenario came up on stigma and discrimination. We
      brought in a team from the Ministry of Health and HIV positive
      persons. Now 90% of members of staff didn’t know this person was
      HIV. She came and she look so well and everybody was going on and
      on and at the end of the thing she said, “I’m HIV”. You should have
      seen their faces. It was like, she was shaking everybody’s hands and
      hugging everybody and then she lets them know she’s HIV. So I think
      when you come into contact with an HIV person, sitting and talking
      about how you wonder how they do it and you’re going to be
      sympathetic to this person, you’re never interested in that when you
      encounter them.”

Confidentiality: This was mentioned as one of the most discouraging forms of
discrimination and according to this group, discouraged testing.

      I‘ll go get tested because it’s the responsible thing to do and a
      particular doctor was really worried he said, “I’m going to give you a
      number and they’re not going to know who you are”. So I went and
      when I went to collect my results, the person who gave me the blood
      test gave me the results with my name on it, the number on the side.
      All I did see was HIV Negative, and to me it was the most
      irresponsible thing because had I been positive, I shouldn’t be
      reading this for myself, second, she handed me the paper so she
      knew what my results were, and she knows my face so that just
      confirmed it.




                                                                                     92
                                BIBLOGRAPHY

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HIV/AIDS provider stigma: assessing regional concerns in the islands of the
Eastern Caribbean. AIDS Care, 19:2, 242 – 247.

Aggleton, P. (2000). Comparative Analysis: Research Studies From India and
Uganda; HIV and AIDS-related Discrimination, Stigmatisation and Denial.
Switzerland: UNAIDS.

Aggleton, P., Wood, K., Malcolm, A., Parker, R. (2005). HIV-Related Stigma,
Discrimination and Human Rights Violations: Case Studies of Successful
Programmes. Switzerland: UNAIDS.

Brooks, R., Etzel, M., Hinojos, E., Henry, C., Perez, M. (2005). Preventing HIV
among Latino and African-American gay and bisexual men in a context of HIV-
related stigma, discrimination, and homophobia: Perspectives of providers. AIDS
Patient Care and STDs, 19(11), 737-744.

Carr, R. (2002). Stigmas, gender, and coping: A study of HIV+ Jamaicans. Race,
Gender and Class, 9, 122-144.

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psychological functioning among HIV-infected and non-infected African-American
women. Women and Health, 38(4), 57-71.

Dinnall, M.E.T., & Bain, B.C. (1994). What church leaders know about the human
immunodeficiency virus infection and how they are responding to the AIDS
epidemic: A study from Kingston and St. Andrew, Jamaica. West Indian Medical
Journal, 43(1).

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Diagnosis and stigma and identity amongst HIV positive Black Africans living in
the UK. Psychology and Health, 21(1), 109-122.

Genrich, G.L. & Brathwaite, B.A. (2005). Response of religious groups to
HIV/AIDS as a sexually transmitted infection in Trinidad. BMC Public Health,
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Hong, K.T., Van Anh, N.T. & Ogden, J. (2004). “Because this is the disease of
the century”: Understanding HIV and AIDS-related stigma and discrimination in
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Liu, H., Hu, Z., Li, X., Stanton, B., Naar-King, S., Yang, H. (2006). Understanding
interrelationships among HIV-related stigma, concern about HIV infection, and
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(2004). Stigma, discrimina-tion and HIV/AIDS knowledge among physicians in
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with HIV/AIDS in Jamaica: a hierarchical analysis of university students. AIDS
Public Policy Journal, 20(1-2):40-50.

Norman, L.R., Carr, R., Jimenez, J. (2006). Sexual stigma and sympathy:
attitudes towards people living with HIV in Jamaica. Culture, Health and
Sexuality, 8(5), 423-33.

UNAIDS. (2003). Fact Sheet: stigma and discrimination. Geneva: Joint United
Nations Programme on HIV/AIDS.

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UNESCO.

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June 25, 2007.

Varas Díaz, N., Toro-Alfonso, J., Serrano-García, I. (2005). My body, my stigma:
body interpretations in a sample of people living with HIV/AIDS in Puerto Rico.
The Qualitative Report, 10 (1), 122-142.

White, R.C., & Carr, R. (2005). Homosexuality and HIV/AIDS stigma in Jamaica.
Culture, Health and Sexuality, 7, 1-13.

Wickramasuriya, T.V. (1994). Attitudes of medical students at Cave Hill Campus
towards AIDS. West Indian Medical Journal, 44, 7-10.

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 Caribbean, (D. Ritchie et al), Washington, D.C. 2005




                                                                                94
APPENDICES
                                                                            APPENDIX 1


       SEMI-STRUCTURED QUESTIONNAIRE FOR KEY INFORMANTS FOR
      ASSESSMENT OF STIGMA AND DISCRIMINATION IN THE CARIBBEAN.




This discussion is to help the Pan Caribbean Partnership against HIV and AIDS, that
includes all CARICOM Member States, the Global Fund Against AIDS, Tuberculosis and
Malaria, and other stakeholders working in HIV/AIDS in the Caribbean to find out what is
happening on the ground in countries, in matters related to stigma and discrimination.
There have already been some efforts to reduce the impact of these two factors on the
epidemic and to encourage increased counseling and testing, the treatment and
prevention of HIV and AIDS. Every country, every community and all citizens have
different experiences, as a result, we need to get closer to reality by discussing it with
persons like you whom we feel can be of assistance.
Thank you for allowing us to talk to you.

My name is ………………………With your permission we would like to keep notes or
tape recordings of these discussions so that we can keep them on record.

Date……………………………………………Time………………………………

Location………………………………………..Country…………………………………

Informants biodata/category………………….

Comments on extent of participation…………………………………..


[THESE DEFINITIONS ARE TO ASSIST YOU - THE INTERVIEWER - AND NOT TO
BE READ OUT TO THE PARTICIPANTS]

Stigma : mark branded on a criminal or slave, imputation attached to one’s name
negatively, stain on one’s good name. UNAIDS (2003) a process of devaluation of
people with HIV or AIDS.

Discrimination: from the verb to distinguish unfavourably, to observe negatively
(Webster’s Dictionary). UNAIDS (2003) “ follows stigma” the unfair and unjust treatment
of an individual based on his or her perceived HIV/AIDS status,




                                                                                     1
GENERAL PERCEPTIONS OF STIGMA AND DISCRIMINATION



     1. What do you understand by the term stigma? ……..………………………………..
     …………………………………………………………………………………………………
     ………………………………………………………………………………………………..

     2. What do you understand by the term discrimination? …………………………….…
     ………………………………………………………………………………………………….

     3. Have you ever felt that you have experienced discrimination? Yes……. No ……...
     If so, what was the cause?

               Family Issues

               Religious

               Ethnic/racial

               Nationality

               Class/social status

               Education

               Health status

               Other (please explain)


     4. Has anyone ever stigmatized or branded you negatively? That is, attached
        negative accusations to you? Yes…… No………..


     5. Are some or groups more accustomed to stigmatise and discriminate? If so, who
        and on what grounds?.........................................................................................


     6. If you were sitting in a room next to someone told you who they had
                    Tubercolosis
                    Malaria
                    HIV
                    AIDS
                    Leprosy
(a)     Which one of these would make you feel most uncomfortable?.................
(b)     Which one would make you feel least uncomfortable?............................
(c )    Which one of these would make you actually move away or leave the
        room?......................................................................
(d)     Why would you feel so uncomfortable ? could you describe your
        feelings?...................................................................................................................
        ....................................................................................................................


                                                                                                                            2
.Stigma and Discrimination Related to HIV and AIDS
7 a. Have you ever witnessed or heard of any act of discrimination against persons living
with or affected by HIV/AIDS, whether it was against the person or relatives of the
person infected with HIV ? Yes……             No………

b. If yes, who was involved? Who were those who were discriminating or placing a
stigma or taboo on others, social exclusion of some kind?

          Family Member

          Friend

          Community

          Health Sector

          School

          Workplace

          Stranger

          Other (please explain)

c. Who was the victim?
Family member … Friend … Someone known to you …A stranger or someone not known to you
……….

d. Where and when did this happen? …………………………………………………………
…………………………………………………………………………………………………….
e. What was the nature of the stigmatization or discrimination?

          Verbal

          Physical

          Removal of services

          Non verbal abuse
          Acts of exclusion from family, community, workplace, health sector,
          school etc.

          Difference of treatment in any way

   f. Do you know how this affected the victim? Yes …… No …..
   in the short term? ……………………………………………………….
   in the long Term? ………………………………………………………..

g. Could you suggest any way of avoiding or preventing this? If yes … No …..
       ………………………………………………………………………………
       ………………………………………………………………………………



                                                                                    3
8.     Have you been involved with any other acts of discrimination, and if so, when
and under what circumstances?
       ………………………………………………………………………………………….
       …………………………………………………………………………………………
    CAUSES OF STIGMA AND DISCRIMINATION
9. Generally speaking, what do you think is the main reasons/causes for
    a. stigma related to HIV and AIDS?………………………………………………………
    ………………………………………………………………………………………………….

   b. discrimination related to HIV and AIDS?……………………………………………….
   ………………………………………………………………………………………………….

    c. How do you think these can be stopped or prevented or reduced?
        …………………………………………………………………………………………….
        ……………………………………………………………………………………………..
PERPETRATORS OF S AND D
10.     Who do you think is the main person or persons who stigmatise or discriminate in
relation to persons living with HIV/AIDS
    in your community? …………………………………………………………………………
    in your country?………………………………………………………………………………

    Are there any others? …………………………………………………………………….
VICTIMS OF S AND D
11.     Who are the main victims of S and D related to HIV and AIDS
    in your community? …………………………………………………………………………
    In your country? …………………………………………………………………………….

12. Which organizations have been most active and successful in helping to reduce S
   and D? ……………………………………………………………………………………..
   …………………………………………………………………………………………………

13. Who has been the most active and successful individual in helping to reduce S and
    D? (You do not have to give names, just indicate the person’s role or profession).
    ………………………………………………………………………………………………….
(a)    What does this person do to reduce S and
D?…………………………………………
    ………………………………………………………………………………………………….




   14.      If you found out that you were HIV positive, what would be your reactions?


   -     angry                   -   no differently
   -     depressed               -   confused
   -     suicidal                -   shame
-   other (specify)
…………………………………………………………………………


                                                                                    4
Why? ……………………………………………………………………………………………

 15. Would you tell anyone? Yes……………………….No………………………….
 16. If yes, Who would you first tell?………………………………………………..
 ……………………………………………………………………………………………….

 17. Do you have any other comments regarding stigma and discrimination related to
 HIV or
 AIDS?.............................................................................................................................
 .......................................................................................................................................
 ................................................................................................................................



 THANK YOU for your kind assistance.




                                                                                                                                5
                                                                            APPENDIX 2


        PANCAP RESEARCH STUDY ON HIV/AIDS RELATED STIGMA AND
            DISCRIMINATION - GUIDELINES FOR FOCUS GROUPS

This discussion is to help the Pan Caribbean Partnership against HIV and AIDS, that
includes all CARICOM Member States, the Global Fund Against AIDS, Tuberculosis and
Malaria, and other stakeholders working in HIV/AIDS in the Caribbean to find out what is
happening on the ground in countries, in matters related to stigma and discrimination.
There have already been some efforts to reduce the impact of these two factors on the
epidemic and to encourage increased counseling and testing, the treatment and
prevention of HIV and AIDS. Every country, every community and all citizens have
different experiences, as a result, we need to get closer to reality by discussing it with
persons like you whom we feel can be of assistance.
Thank you for allowing us to talk to you.

My name is ………………………With your permission we would like to keep notes or
tape recordings of these discussions so that we can keep them on record.

Date……………………………………………Time………………………………

Location………………………………………..Country…………………………………

Informants biodata/category………………….

Comments on extent of participation…………………………………..


[THESE DEFINITIONS ARE TO ASSIST YOU - THE INTERVIEWER - AND NOT TO
BE READ OUT TO THE PARTICIPANTS]

Stigma : mark branded on a criminal or slave, imputation attached to one’s name
negatively, stain on one’s good name. UNAIDS (2003) a process of devaluation of
people with HIV or AIDS.

Discrimination: from the verb to distinguish unfavourably, to observe negatively
(Webster’s Dictionary). UNAIDS (2003) “ follows stigma” the unfair and unjust treatment
of an individual based on his or her HIV/AIDS status.




                                                                                     1
PERCEPTIONS OF STIGMA AND DISCRIMINATION

   (1) What do you understand by the word “stigma”?

Probe: are there differences in the group’s responses? Are there especially strong
categories that come out of the group?




   (2) What do you understand by the word “discrimination?”

Probe: are there differences in the group’s responses? Are there especially strong
categories that come out of the group?



   (3) Have you ever had any personal experiences of stigma or discrimination?

Probe: what type, and from whom, and under what circumstances?




   (4) If you did have personal experiences of S and D, why do you think you were
       treated that way?

Probe: cultural, social, class, “feelings” eg personal feelings such as jealousy, money,
family issues etc.




   (5) Which groups or persons do you think are more likely to stigmatise and/or
       discriminate against others?

Probe: Still in the general area of the nature of stigma and discrimination, you are trying
to get specific responses in order to reveal the respondents’ particpants’ feelings and
experiences of S and D.


STIGMA AND DISCRIMINATION RELATED TO HIV AND AIDS

   (6) How do you think persons who have contracted the HIV virus should be treated,
       and why?

Probe: Is there any special differentiation in the group, and if so, from who and what is
the intensity of feelings? This is an important query and the Investigator needs to
observe carefully the ease or unease of the focus group , the body language and the
non-responses as well as verbal responses.


                                                                                       2
   (7) How do you think persons who have developed AIDS should be treated, and
       why?

Probe: See instructions in (6). Also note, if there is any difference between the
responses regarding HIV and those related to AIDS. Is there a difference regarding their
ease or unease, and also the body language and non responses.


   (8) Do you think persons with HIV and/or AIDS should be hiven the same health
       care as someone with any other chronic disease eg diabetes, cancer, high blood
       pressure? And if so, why?

Probe: This is where you will have to be scrupulous is noting differences. Is there a
hidden perception of physical contact related to transmission, even if they appear quite
comfortable in discussing or sitting with those affected or infected? Also what is the
intensity of feeling – strong, weak, ambivalent, unease.


AVOIDANT BEHAVIOUR

   (9) How would you react to someone who you knew or came in contact with who
       was HIV positive?

Probe: Family member, teacher, shop keeper, food handler/seller, fellow student, co-
worker. Here you will have to do some probing and also note different reactions if at all.
Also, once more, make note if there is any unease or reluctance to answer. This might
indicate perceptions of personal risk or risk related to known persons.


   10) Do you believe that stigma and discrimination are strong factors/agents of
       driving the HIV/AIDS epidemic underground, thus increasing its spread? If so,
       what can be done to reduce or prevent stigma and discrimination?

Probe: This is an open ended question that has two directions, assessing the feelings
and beliefs, as well as perceptions related to prevention.




                                                                                      3

				
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