FINAL REPORT: THE PEOPLE LIVING WITH HIV STIGMA INDEX: JAMAICA

Transcription

1 FINAL REPORT: THE PEOPLE LIVING WITH HIV STIGMA INDEX: JAMAICA FEBRUARY 23, 2012

2 ACKNOWLEDGEMENTS The People Living with HIV Stigma Index: Jamaica benefited from the guidance offered by the global steering committee, comprising the International Planned Parenthood Federation (IPPF), in partnership with UNAIDS, the Global Network of People Living with HIV (GNP+) and the International Community of Women living with HIV and AIDS (ICW); the national steering committee, with representation from the Ministry of Health, UNAIDS, Jamaica AIDS Support for Life, Jamaica Network of Seropositives, Jamaica Community of Positive Women, Caribbean Vulnerable Community, Caribbean HIV/AIDS Regional Training Network and the University of the West Indies HIV/AIDS Response Programme. The team of interviewers were dedicated and professional; the proved invaluable to the project. The interviewees deserve very special appreciation for sharing their lives and time with such generosity. 2

3 DISCLAIMER "The People Living with HIV Stigma Index is designed as an evidence-gathering and advocacy tool led by and for people living with HIV to raise awareness of stigma and discrimination as experienced by PLHIV. To that end, the methodology is designed to capture respondents perceptions and experiences of stigma and discrimination, external as well as internalized. As research respondents, the PLHIV participating in the research have a right to anonymity and to the confidentiality regarding their responses. Survey questions are limited to this focus and the methodology does not include follow-up questions to re-confirm respondents perceptions or to take action to respond to the stigma and discrimination documented through the Stigma Index. As a result, while the data present information and evidence on the perceived and experienced stigma, the survey is not intended nor can it be used as a fact-finding or as a source of allegations of wrong-doing. The People Living with HIV Stigma Index is designed as a research tool by whichpeople living with HIV capture data on their experiences and perceptions regarding stigma and discrimination. In this regard, the results can be said to comprise a snapshot of the level of HIV-related stigma and discrimination in a certain place and time. Through its implementation, the tool also serves to educate and empower on human rights related to HIV. Survey questions therefore focus on experiences and perceptions and do not represent factual investigations, withfollow up questions, into particular allegations, incidents or events, nor are the answers to the questions subject to independent verification. As research participants interviewees have a right to anonymity and to confidentiality regarding their responses. In addition to the empowerment function, appropriate uses of the data are for advocacy and in order to inform stigma/discrimination reduction programming in the national response to HIV. 3

4 TABLE OF CONTENTS SECTION 1: BACKGROUND 8 SECTION2: DEMOGRAPHIC DATA 18 SECTION 3: PERCEPTIONS AND EXPERIENCES OF STIGMA AND DISCRIMINATION 26 SECTION 4: DISCRIMINATION FROM OTHER PLHIVS AND DISCRIMINATION AGAINST HOUSEHOLDS 46 SECTION 5: HIV, EMPLOYMENT, EDUCATION AND HEALTH 51 SECTION 6: INTERNALIZED STIGMA 59 SECTION 7: KNOWLEDGE OF RIGHTS, LAWS AND POLICIES 63 SECTION 8: EFFECTING CHANGE AND PLHIVS RECOMMENDATIONS 68 REFERENCES 79 4

5 ACRONYMS Female Sex Worker Global Network of People Living with HIV International Planned Parenthood Federation International Community of Women living with HIV and AIDS Joint United Nations Programme on HIV/ AIDS Men Who Have Sex with Men Most at Risk Populations People Living with HIV Statistical Institute of Jamaica United Nations General Assembly FSW GNP+ IPPF ICW UNAIDS MSM MARPS PLHIV STATIN UNGASS 5

6 CHARTS AND TABLES Chart A Sample Breakdown by Region, Sex and Age Group 10 Table 1.1: Sample Breakdown by Parish 11 Table 1.2: Sample Breakdown by Age Group and Sex 12 Table 1.3 Frequencies by Parish 12 Table 1.4 Frequencies by Region 13 Table 1.5 Frequencies by Region and Age 13 Table 1.6 Anticipated versus Actual Numbers of Respondents 13 Table Key Populations 17 Table Groups that do not belong to a category 17 Table Location by Sex 19 Table Education Levels: Sex and Location 19 Chart Highest Formal Level of Education Completed 20 Table Employment Status by Location 20 Table Income Levels by Sex 21 Table Length of Time Living With HIV 21 Table Households by Location 22 Table Sexually Active by Relationship Status 23 Table Perceptions of Exclusion by Sex 26 Table Left Out of Social Gatherings and Activities By Income (Male) 27 Table Left Out of Social Gatherings and Activities By Income (Female) 27 Table Reasons for Social Exclusion by Sex 28 Table Perceptions/Experiences of Gossip by Sex 29 Table Perceptions/Experiences of Verbal Harassment by Sex 29 Table Frequency of Physical Harassment and/or Threats by Sex 30 Table Frequency of Physical Assaults by Sex 30 Table Physical Assault by Location (Women) 32 Table Physical Assault by Location (Men) 33 Table Left out of any social gatherings or activities by age 35 Table Reasons for Gossip by Age 36 Table Experiences of Verbal and Physical Harassment 36 Table Reasons for Verbal Harassment 37 Table Reasons for Physical Harassment 37 Table Reasons for Physical Assault 38 Table Physical Harassment and Income Group: Women 38 Table Reasons for Physical Harassment 39 Table Physical Assault and Income: Women 39 Table Physical Assault and Employment Status: Women 40 Table Left out of any Family Activities by Income 42 Table Reasons for Family Exclusion by Income 42 Table 3.7.1a Forms of Discrimination Most Fearful of by Sex 43 Table 3.7.1b Forms of Discrimination Most Fearful of by Sex 44 Table Discrimination from Other PLHIVs by Sex 45 Table Discrimination from Other PLHIVs by Location 45 Table Discrimination from Others PLHIVS by Income 46 Table Psychological Pressure by Sex 49 Table Forced to Change Place of Residence by Sex 51 Table Forced to Change Place of Residence by Location 52 Table Loss of Job/Income by Age Group 53 Table Reasons for Loss of Income 54 Table Dismissed, Suspended or Prevented From Attending an Educational Institution by Sex 55 Table Was the Decision to be Tested up to You by Sex 56 Table Was the Decision to be Tested up to You by Location 56 Table Disclosure of Status by Health Professional by Sex and Location 57 6

7 Table Behaviours Not Done Because of HIV Status 59 Table Table Knowledge of the Declaration of Commitment on HIV/AIDS by Education Levels and Location 62 Knowledge of National HIV Policy, which protects the rights of PLHIV by Education and Location 63 TEXTBOXES Textbox The Value of the Methodological Approach 15 Textbox Abuse: One Woman s Tale of Torment 32 Textbox 3.4.2: Excerpt from Case Study: Small Town Dynamics 32 Textbox The Importance of Focusing on Small Towns and Rural/Deep Rural Communities 34 Textbox How the Length of Time Living With HIV Appears Influence Perceptions and Experiences of Exclusion, Gossip, Harassment and Assault 40 Textbox Case Study: Family Exclusion 41 Textbox Focus group with MSM PLHIVs 46 Textbox 5.1.1: Excerpts from Focus Group Discussion: HIV, Discrimination and Poverty 53 7

8 SECTION 1 BACKGROUND The Jamaica National HIV Strategic Plan (draft of August 2011) provides the most up-to-date information on the country s HIV status. Approximately 2.7 million persons reside in Jamaica; of these, 53% of the population is between 15 and 49 years. In 2011, the adult HIV prevalence in Jamaica was 1.7%. It is estimated that 32,000 persons are living with HIV but that half of these persons are unaware of their status. In Jamaica, the HIV epidemic is both generalized in the population and concentrated among key populations. Rates of HIV infection among key sub-populations remain high although the prevalence rate within the general population has been less than 2% for several years. Data from the Ministry of Health and UNAIDS shows the following prevalence rates: 1. Men who have sex with men (MSM) - 32% for over 15 years (Figueroa et al, 2011). 2. Female sex workers (FSW) - 9% in 2005 and 4.9% in 2008; 3. Prison inmates approximately 4.8%;, 4. The homeless - 10% and 5. Crack/cocaine users - 5% (Ministry of Health, Jamaica 2010; Figueroa et al 2008, UNAIDS 2010). The UNGASS Report summarizes the key factors underlying the epidemic: Persistent high risk behaviours such as multiple sex partners, high levels of transactional sex, and decreasing age of sexual debut combined with poverty, gender disparities and homophobia continue to fuel the transmission of HIV in Jamaica. As part of its national response, the Government of Jamaica has been working with stakeholders from the private sector, non-governmental organizations, international partners and line ministries to implement the priority actions that are defined under the country s National Strategic Plan: Prevention Treatment care and support Enabling environment Empowerment and governance The People Living with HIV Stigma Index The People Living with HIV Stigma Index is designed to measure the levels of stigma experienced by people living with HIV. Developed by the Global Network of People Living with HIV (GNP+), the International Community of Women living with HIV and AIDS (ICW), the International Planned Parenthood Federation (IPPF), in partnership with UNAIDS, the Index is meant to provide the basis for evidence based policy and programmatic interventions to combat stigma and discrimination. This is important since stigma and discrimination have been identified as among the root causes of high HIV prevalence rates as well as low testing, low access to treatment; and poor health seeking behaviours. Further, the Stigma Index gathers perspectives on how stigma and discrimination affect each of the priority areas identified in the National Strategic Plan. It, therefore, helps policymakers and programmers to reflect on the effectiveness of the Plan. The Stigma Index complements other studies, including the 2008 HIV/AIDS Knowledge Attitudes and Behavior Survey and the 2011 National Survey of Attitudes and 8

9 Perceptions of Jamaicans Towards Same Sex Relationships. There is also a range of related publications on subjects such as the problem of homophobia, HIV/AIDS risk mapping and, HIV/AIDS prevention. A selection of these is noted below. 1 The People Living with HIV Stigma Index is being applied in a number of countries throughout the world. In Jamaica, UNAIDS is providing technical and financial support to the study and the Jamaica Network of Seropositives is spearheading the process, with guidance from an appointed steering committee. The Steering Committee includes officers from the Caribbean HIV/AIDS Regional Training Network, Caribbean Vulnerable Community, Jamaica AIDS Support for Life, Jamaica Community of Positive Women, Jamaica Network of Seropositives, Ministry of Health, UNAIDS and the University of the West Indies HIV/AIDS Response Programme. THE TERMS OF REFERENCE The Terms of Reference (See Annex 1) for the study lists the following objectives: 1) Document the experiences of people living with HIV in Jamaica regarding stigma and discrimination; 2) Gather information that will inform the development and implementation of national policies that protect the rights of people living with HIV; 3) Provide the foundation for evidence based programmatic interventions; 4) Provide a baseline for measuring changes in stigma and discrimination over time; and 5) Provide information that will allow us to compare the levels of stigma and discrimination across countries. METHODOLOGY In designing the methodology for the study in Jamaica, researchers initially aimed for a stratified sample of PLHIV with representation from: a) The most at risk populations (MARPS), which in Jamaica comprise MSMs (and particularly those who are homeless); crack/cocaine users; sex workers; young people (especially young women and out of school youth); persons who have been in prison and STI clinic attendees; b) Deep rural-rural; peri-urban to urban areas; c) Men and women, male and female youth; d) The elderly; and e) Parents of HIV positive children. The success of this methodological approach relied, considerably, on close and consistent support from agencies that are working with the MARPS, the capacity of the regional health authorities to reach adequate numbers of persons, such as within deep 11 Carr, R. (2003). On "Judgments:" Poverty, Sexuality Based Violence and Human Rights in 21st Century Jamaica. The Caribbean Journal of Social Work, Vol. 2, pp.71-87; Chevannes, B. (2004). Sexual Practices and Behaviour in Jamaica: A Review of the Literature. Jamaica: AIDS Public Health Communication (AIDSCOM).; Gutzmore, C. (2004) Casting the first stone: Policing of Homo/Sexuality in Jamaican Popular Culture. Interventions Vol. 6(1) Human Rights Watch. (2004). Hated to Death - Homophobia, Violence, and Jamaica's HIV/AIDS Epidemic; King, J. (2006). Outing the Centre: Homophobia in Jamaica. Jamaica: SIT Jamaica: Gender and Development Luton, D., Buggery laws firm - PM says life or 15 years for some sex-offence breaches. The Jamaica Gleaner: March 4, 2009.; Royes, H. (2003). HIV/AIDS risk mapping study of Men who have sex with Men in Jamaica. Jamaica: Jamaica HIV/AIDS Prevention and Control Project, Ministry of Health; White, R, R. Carr. (2005). Homophobia and HIV/AIDS Stigma in Jamaica. Culture Health and Sexuality 7(000):1-13; Williams, L. (March 2000). Homophobia and Gay Rights Activism in Jamaica. Small Axe 7,

10 rural to rural areas and to secure good representation, such as from among the youth. However, discussions with the steering committee and among other stakeholders indicated that there would be substantial challenges to executing the research in this way, since both the agencies and the health authorities would have difficulties in reaching these subpopulations and ensuring their representation in the study in the numbers anticipated. Therefore, an alternative, three-pronged, strategy was proposed: 1. The study would be conducted across all 4 regions of the country: western, southern, south eastern and northeastern. 2. The regional health authorities would have responsibility for reaching PLHIVs, aiming for specified age and sex criteria. 3. The agencies that work with different categories of MARPS would facilitate focus groups or case studies as required. Details of the sample selection process are outlined below: Sample selection In tandem with the guidelines specified by the global steering committee, the research team aimed for a sample size that was, at minimum, 3.5% of the reporting population of PLHIVs. From this result, the number of children should also be subtracted. Based on the available figures, the original sample size was estimated at 350 respondents. However, there was an immediate challenge: Key stakeholders in Jamaica opted for a population-based study, with capacity to make valid assessments across the regions. Correspondingly, it was discovered that when weighted to reflect prevalence rates, the sample sizes in the lowest areas of prevalence were too low to derive conclusions with respectable levels of confidence. The only recourse was to increase the sample to the full extent that the budget would allow. The sample size was, therefore, increased to 540. The following provides a breakdown of how the sample was allocated. Chart A: Sample Breakdown by Region, Sex and Age Group Regions Sample Male Female Western- St James, Trelawny, Hanover, Westmoreland Southern- St Elizabeth, Manchester, Clarendon North Eastern- Portland, St Mary, St Ann South Eastern- Kingston and St Andrew, St Thomas, St Catherine Total Age Spread WR

11 SR NE R SE R Source: Statistical Institute of Jamaica The Statistical Institute has been careful to caution that while this sample allocation allows for fairly reliable analysis across the Western, North Eastern and South Eastern regions, the sample size in the Southern region is still lower than desired, which limits the analysis that can be made at the regional level. Across the regions, care should also be taken with gender and parish level analyses, as the sample sizes are not adequate for conclusive statements. The following tables show the breakdown of the sample by parish (Table 1.1) and by age group and sex (Table 1.2). Table 1.1: Sample Breakdown by Parish Parish Prevalence/ Sample KGN/St Andrew 1/ St Thomas

12 Total Portland St Mary St Ann Trelawny St James Hanover Westmoreland St Elizabeth Manchester Clarendon St Catherine Source: Statistical Institute of Jamaica Table 1.2: Sample Breakdown by Age Group and Sex Age Spread % Redistribute 4% New % Total Male Female Total Source: Statistical Institute of Jamaica The recommended sample of 540 respondents was shared among the age groups given in Table 1.2. Calculations for the four health regions utilized data from the latest parish prevalence rates provided by the Ministry of Health (Table 1.1). The sample breakdown totals for the parishes and age groups were calculated using the given percentages from the overall data reported to the Ministry of Health (January 1982-December 2009). For the Health Regions (Chart A), the calculated parish samples 12

13 were combined, while for age groups within the Health Regions, the sample sizes were determined in the proportion from the 2009 reported cases (704 males and 785 females). With a 95% Confidence Interval for an estimated percentage response rate of 50% and a design effect of 1.00, the 540 sample should have a sample error in the region of 4.4. The sampling errors for the regions would be between 6.2 at the higher level and 8.6 at the lower level ( ). Given the total number of reported cases island-wide and the limited sample size, it was recognized that all conclusions would have to be carefully arrived at. The tables below show the actual numbers of respondents, broken down by parish, region, age and sex. The response rate of 94.2% was much higher than estimated. Male Female Transgender Table 1.3 Frequencies by Parish Frequencies by Parish Total Westmore St. St. St. Port- St. St. Claren- Man- Tre- St. Han- St. KGN And. Cath. Thom. land Mary Ann don chester lawny Elizabeth land over James Total Table 1.4 Frequencies by Region Frequencies by Regions Southern Northeast Western Southeast Total Gender Male Female Transgender Total Table 1.5 Frequencies by Region and Age Regions Southern Northeast Western Southeast Total How old 16-19yrs are you 20-24yrs yrs yrs yrs yrs and over Total Table 1.6 Anticipated versus Actual Numbers of Respondents 13

14 Anticipated Numbers of respondents Actual numbers of respondents Southern Region Northeast Region Western Region Southeast Region Total THE INTERVIEWER SELECTION PROCESS: Interviewer selection: Consistent with the process in other parts of the world, interviewers were selected from among persons who are living with HIV. Notices of vacancies were sent to agencies that are working with PLHIVs and shortlisted candidates were invited to a workshop. However, the selection process in Jamaica was, otherwise, distinct. In order to ensure that the final complement of interviewers comprised the best available candidates, the final list of interviewers was selected over a three-day period, using the following criteria: 1. Presence A. Attend all days of the workshop B. Demonstrate interest in topic area 2. Interaction A. Relate well with other members of the team B. Be open to being challenged/corrected C. Be willing to resolve issues D. Participate in workshop (asking questions, making comments, participating in group work, role plays) E. Be open to the process of understanding issues related to stigma and discrimination, including emotional issues 3. Attitude A. Demonstrate sensitivity B. Demonstrate awareness of importance of confidentiality 4. Tests A. Score 80% or above on post test B. Demonstrate learnt interview skills C. Demonstrate knowledge of core concepts Notably, the criteria did not include literacy assessments, as the initial list of candidates had been selected based on the qualifications submitted. The application forms indicated that all candidates had achieved the minimum qualification level desired: high school level education. Nevertheless, the workshop revealed problems with literacy. This, combined with the other criteria, meant that while 17 potential interviewers attended the workshop, only 8 were selected in the final round. This meant a higher than desired workload: each interviewer was to be responsible for approximately 68 interviews; further, selected interviewers were trained to conduct the focus groups. The team was supported by two team leaders---also PLHIVs---who were members of the steering committee. The appointed consultant provided oversight throughout the fieldwork. 14

15 Subsequent to the research, the interviewers were asked for their feedback on the process. As desired, the interviewers were empowered through the process and their work with interviewees was, often, also empowering, particularly for those who were, at first, hesitant about participating. RESEARCH INSTRUMENTS The research instruments used in this study comprised questionnaires, focus group discussions and case studies. The questionnaire was pre-designed by the Global Network of People Living with HIV (GNP+), International Community of Women living with HIV and AIDS (ICW), International Planned Parenthood Federation (IPPF) and UNAIDS. While only limited changes to this instrument were permitted, the country team was allowed to include specific country relevant questions in order to explore selected themes, which the Steering Committee considered critical for policy analysis and programming in Jamaica. These were: A. Deep rural/rural dynamics B. The dynamics of discrimination across urban spaces C. Internalized stigma (how persons feel about themselves) and outcomes D. Internal stigma (within the community of PLHIVs) E. Experiences of persons who have lived with the diagnosis for many years (these persons will be encouraged to reflect on changes in types and levels of stigma and to make policy and programme recommendations) F. Categorizations beyond the familiar labels G. The differential nature of stigma across state and non-state agencies Specific questions were added to the questionnaire and can be identified by the marker: JM*. These themes were, to varying degrees, also incorporated in the focus group discussions. Specifically, the focus groups concentrated on: 1. The dynamics of discrimination within rural and deep rural areas 2. The relationship between HIV and Poverty, particularly among the elderly 3. Experiences of Young People who are Living with HIV 4. Experiences of MSMs who are living with HIV Researchers hoped to conduct focus groups among other subpopulations, including sex workers, PLHIVs with disabilities and PLHIVs who are/were prison inmates. However, these proved impossible to organize. It is expected that following distribution of this report, policy-focused focus groups will be conducted in order to refine responses to the findings. 15

16 QUESTIONNAIRE ADMINISTRATION Initially, researchers intended to complete the questionnaires in small---though individualized and private---group sessions. However, respondents preferred private interviews and this was facilitated in all cases. Team leaders were available throughout all these sessions in order to monitor the interview Textbox 1.1: The Value of the Methodological Approach Throughout the fieldwork, there were some instances when interviewees refused to participate---at least initially--- because they interpreted the interviewers looks as discriminatory. Some of these respondents were very vocal and even combative. However, perceptions changed very swiftly when the interviewers opted to disclose their own status. By the end of some interviews, respondents felt they had found a new friend. Some claimed to have been strengthened and made more hopeful by the encounter: Mi neva know (I did not know) PLHIVs could look so good! On reflecting on the research process, various interviewers explained that their discussions with interviewees appeared to lift the respondents spirits, including in cases where they first reported feeling suicidal. process, check the quality of the questionnaire on site and facilitate immediate follow up action, where needed. LIMITATIONS AND CHALLENGES OF THE STUDY There were a number of limitations and challenges that affected the research process and outcomes. These are listed below: 1. The PLHIV Stigma Index was designed to include PLHIVs as interviewers (this was mandatory) and as data entry clerks (this was optional). Pre-survey training was required and this should have prepared interviewers and data entry personnel for their tasks. In Jamaica, the majority of PLHIVs who were available and willing to participate as interviewers, particularly given the low remuneration offered, were high school graduates with varying levels of educational achievement, experience and skills. Interviewer training took place over three days; the budget could not facilitate more. In addition, training was provided throughout the course of the fieldwork. Plans were made to ensure adequate supervision throughout the process. This proved advantageous, as close supervision minimized the numbers of spoiled questionnaires. However, this approach did not prevent all errors. Given the numbers of surveys that had to be completed each day, it proved difficult to check each questionnaire with the depth desired. The quantitative results indicate that despite monitoring, there were some flaws in data collection. Perhaps prime among these is the large numbers of responses that were listed as not applicable, including in circumstances where it appears that further probing could have generated different responses. Therefore, while working with PLHIVs as interviewers had distinct advantages, a lengthier and more intensive training period would have improved the results. 2. Consistent with the research guidelines, two persons were hired and trained to enter the data. These individuals had applied for the post of data entry clerk and received training both in the art of interviewing and in entering data via SPSS. However, this aspect of the process proved the most problematic: the SPSS package proved challenging to the clerks and the period of training was too brief given the expectations of the assignment. Eventually, the data had to be re-entered and reanalyzed, which delayed the production of the final report. 3. The study proposal noted that data collection should take place in a conducive environment, where the interviewer and interviewee could feel comfortable that 16

17 confidentiality would be maintained. This was achieved in the majority of cases. However, there were three research sites that were not sufficiently spacious and extra measures had to be taken to ensure confidentiality. 4. The study suffered from financial constraints and some administrative glitches, which hampered fieldwork on some occasions. REPORT LAYOUT The findings from the PLHIV Stigma Index are reported in the following sub-sections: a) Demographic Data b) Perceptions and experiences of stigma and discrimination c) HIV, employment, education and health d) Discrimination against household members e) Internalized stigma f) Knowledge of rights, laws and policies g) Effecting change and PLHIV recommendations 17

18 SECTION2: DEMOGRAPHIC DATA This section of the report presents demographic data on the PLHIVs who participated in the study. The subsections cover sex and age representation, education levels, employment status and income. 2.1 SEX AND AGE REPRESENTATION There were more female and less male respondents than estimated. There were also a limited number of persons who classified themselves as transgender (3 persons); the small numbers of respondents within this category makes it difficult to make valid assessments about the group. Therefore, while they have been included in some tables, there is no analysis of their needs and circumstances. One common complaint across the regions was that the youth population was especially reluctant to participate. Health and social workers suggested that this had much to do with the levels of discrimination that young people encounter and/or perceive that they are likely to encounter. Furthermore, younger persons, particularly those who are recently diagnosed, appear to have greater difficulty managing their emotions and are, correspondingly, less amenable to discussing their experiences. Thus, while the survey anticipated 17 persons aged 16-19, only 6 participated in the study. Eighty-three (83) PLHIVs aged participated, as opposed to the 114 anticipated. 2.2 KEY POPULATIONS In addition to studying the general population, the Index made concerted attempts to identify and incorporate key populations/groups. Only 60 of the 509 respondents classified themselves as belonging to particular groups. These key population groups, broken down by sex, are presented in the table below. The intention was to pay specific and special attention to these population groups; however, the numbers are too low to make noteworthy conclusions. In reflective sessions, post interviews, researchers noted that many persons refused to identify with groups although these respondents provided other information that suggested that they could be included. MSMs were especially reluctant to identify with a group, given the severe repercussions that they believe are likely to result, including from other members of the group. Table Key Populations Key populations by sex Male Female Transgender Total MSM 78.9% (15) 15.8%(3) 5.3%(1) 100%(19) Gay/lesbian 66.7%(4) 16.7%(1) 16.7%(1) 100%(6) Transgender 0%(0) 0%(0) 100%(1) 100%(1) Sex worker 37.5% (3) 62.5% (5) 0% (0) 100% (8) Injecting Drug User 71.4%(5) 28.6%(2) 0%(0) 100%(7) Refugee 0%(0) 100%(1) 0%(0) 100%(1) Displaced person 57.1%(4) 42.9% (3) 0%(0) 100%(7) Migrant Worker 80%(4) 20%(1) 0%(0) 100%(5) Prisoner 41.7%(5) 58.3%(7) 0%(0) 100%(12) Eighty seven (87) percent of respondents claimed not to belong to any category. 18

19 2.3 NUMBERS OF PERSONS IN HOUSEHOLDS IN EACH AGE CATEGORY Forty five percent (45%) of the 67 males (30 persons) who responded to this query reported having 1 person in the 0-14 age group in their household, compared with 40.7% (88 persons) of the 216 female respondents. Twenty four percent (24%) of males had 2 persons within this age category in their households while 22.4% had 3 persons. In comparison, 27.3% of females noted that they had 2 persons between 10 and 14 in their households while 18.5% had 3 persons. In the age group, 30 males (75% of the 40 who responded) had 1 youth within their household while 22.5% had 2. In comparison, 70.2% of females (87 persons) had 1 person between 15 and 19 in their household; 26.6% (33 persons) had 2. Sixty two percent (62%) of the males (24 persons) who noted that they had persons between 20 and 24 in their households claimed to have only one; 23.1% had 2 persons and 12.8% had 3. Seventy-six (76%) of the 101 females who responded noted that they had one person in the age category in their household; 22% had 2 persons. Twenty-five (25) of the 35 male interviewees who responded reported having 1 person in the age group in their household, compared with 66 of the 84 female respondents. Twenty three percent (23%) of males had 2 persons within this age category in their households while 18% of females had 2 persons. For the age group, 76% of male interviewees (57 persons) had 1 adult who was between 30 and 39 years living in their household, while 19% had 2 persons. Eighty four percent (84%) of female respondents (113 persons) had 1 individual in this age group living in their household and 14.1 % had 2 persons. Eighty two percent (82%) of the males (65 persons) who noted that they had individuals between 40 and 49 years in their households claimed to have only one; 17% had 2 persons. One hundred of the 119 females (84%) who responded noted that they had one person in the age category in their household; 16% had 2 persons. Finally, 76% of male respondents to this query stated that they had one person who was over 50 years in the household while 22% of males (16 persons) had 2. Seventy-seven percent (77%) of male respondents (69 persons) and 22% of female interviewees had one and two persons within this age category respectively. It is important to be careful in interpreting the data, particularly in assuming that female respondents head larger households than do males. This is because there was a greater proportion of female to male respondents. Furthermore, the questionnaire enquired about members within a household and did not specify whether these households were female or male headed. Within the Jamaican context, this additional query would have been useful. 2.4 LOCATION BY SEX Of the PLHIV s interviewed, larger percentages of both male and female respondents reside in small towns and villages, followed by rural areas and large towns or cities. 19

20 Table Location by Sex Sex * Is your household in any of these location? n=503 Is your household in any of these location A small A rural area town or village A large town or city Total Sex Male Count % within 27.1% 60.1% 12.8% 100.0% Gender Female Count % within 33.0% 52.9% 14.1% 100.0% Gender Transgender Count % within Gender 33.3% 33.3% 33.3% 100.0% 2.5 EDUCATION LEVELS Of the interviewees, less males than females reported having no formal education. This is not surprising given the higher proportion of females to males in the study. However, of those who had had formal education, the numbers of females exceeded the numbers of males in every category. Care should be taken in interpreting the data, again because of the female to male ratio in the study. Nevertheless, it is important to underscore that these findings correspond to those observed nationally: there are more educated females in the population. Table Education Levels: Sex and Location n=507; missing=1 What is the highest level of formal education you have completed No formal education Primary school Secondary school College/ University Missing Total Gender Male % 27.5% 60.8% 10.5%.5% 100.0% Female % 24.8% 61.8% 12.1%.0% 100.0% Transgender % 33.3% 33.3% 33.3%.0% 100.0% Total % 25.8% 61.2% 11.6%.2% 100.0% Chart Highest Formal Level of Education Completed 20

21 Female; Secondary School ; 194 Transgender; Female; Male; No No No formal formal Education; 24 0 Female; Primary School; 78 Male; Primary School; 52 Transgender; Primary School; 1 Male; Secondary School ; 115 Transgender; Secondary School ; 1 Male Female Transgender Female; College/Univers Male; College/Univers Transgender; ity; 38 College/Univers ity; 20 ity; 1 The data shows that there are larger numbers of formally educated PLHIVs residing in small towns and villages than in the urban centers and rural areas. At the same time, larger numbers of PLHIVs without formal education also reside in small villages and towns. 2.6 EMPLOYMENT STATUS: SEX, AGE AND LOCATION Among the PLHIVs interviewed, more females than males were unemployed across all age categories (See Annex 2A). More females than males were employed both full and part time in the following age categories: 25-29, 30-39, and (There were insufficient numbers of respondents in the and age categories to draw worthwhile conclusions.) Among respondents 50 years and over, employed females exceeded the numbers of employed men in one category only: part time employment as employee. Across the regions, small towns and villages had the highest levels of employment and unemployment while large town and cities had the lowest levels. Over half of the respondents were unemployed, regardless of where they lived. Table Employment Status by Location N=503 Rural Small Village Large town Total /town /city Full time employment as employee 14.2%(22) 11.8%(33) 15.9%(11) 13.1%(66) Part time employment as employee 9%(14) 7.2%(20) 14.5%(10) 8.7%(44) Full time self employed 5.2%(8) 8.2%(23) 10.1%(7) 7.6%(38) Part time self employed 12.3%19) 18.3%(51) 10.1% (7) 15.3%(77) Unemployed 57.4%(89) 53.8%(150) 43.5%%(30) 53.5%(269) *Student 1.9% (3) 0.7% (2) 5.8% (4) 1.8% (9) Total 100%%(155) 100%(279) 100%(69) 100%(503) 2.7 INCOME LEVELS 21

22 Fifty six percent (56%) of the women interviewed, as opposed to 46% of the men are in the lowest income group. Thirty seven percent (37%) of the men interviewed as opposed to twenty seven percent of the women are in the highest income group. Based on these findings, it is important to study whether there are higher levels of poverty among women- --as opposed to men---who are living with HIV and, if so, the dynamics that contribute to it. Table Income Levels by Sex n=419 Income monthly Lowest Middle Highest Total Gender Male % 17.1% 37.3% 100.0% Female % 17.1% 27.1% 100.0% Transgender % 33.3%.0% 100.0% Total % 17.2% 30.8% 100.0% 100.0% 100.0% 100.0% 100.0% The lowest income groups represented in the survey are fairly evenly spread across the regions. However, based on the sample, more PLHIVs within the highest income categories are located in the large cities. There is a marked difference in the proportions of middle income PLHIVs across small towns (17.8%) and rural areas (20%) compared with the urban areas (8.6%). 2.8 LENGTH OF TIME LIVING WITH HIV Overall, 10.5% of the respondents have been living with HIV for less than and up to one year; 27% between 1 and 4 years; 41% between 5 and 9 years; 14% between 10 and 14 years; 7% for 15 years and more and 1.2% were unsure. Table Length of Time Living With HIV n=505 How long have you been living with HIV 0-1yr 1-4yrs 5-9yrs 10-14yrs 15yrs and over Not sure Total Gender Male % 28.4% 37.9% 13.2% 8.9% 1.1% 100.0% Female % 26.6% 42.3% 14.1% 6.7% 1.3% 100.0% Transgender % 33.3% 66.7%.0%.0%.0% 100.0% Total % 27.3% 40.8% 13.7% 7.5% 1.2% 100.0% Regardless of the length of time that persons have been living with HIV, higher proportions of the sample of respondents reside in small towns and villages, followed by rural areas. 22

23 Table Households by Location n=501 Is your household in any of these locations? A rural area A small town or village How long have you been living with HIV 0-1yr 1-4yrs 5-9yrs 10-14yrs 15yrs and over Not sure Total % 24.0% 41.6% 15.6% 8.4% 1.3% 100.0% % 29.1% 40.3% 12.9% 7.2% 1.4% 100.0% A large town or city % 27.5% 42.0% 11.6% 7.2%.0% 100.0% Total % 27.3% 40.9% 13.6% 7.6% 1.2% 100.0% Annex 2B presents data on additional demographic research, specifically the findings on disability status and on the numbers of children and youth who have parents who have died from AIDS. Nineteen percent (19%) of the men who responded (36 men) reported that they had other disabilities. Fourteen percent (14%) of the females (43 women) who responded to this query had other disabilities. Attempts to arrange for a focus group among PLHIVs with disabilities have not proven successful. A relatively small proportion of persons reported having children within their households whose parents or former guardians have died from AIDS. Females reported the majority of cases, which were largely located in small towns and villages. The study paid minimal attention to the experiences of children who are living with or affected by HIV. 2.9 RELATIONSHIP STATUS BY SEX Of the 84 males who identified that they were involved in relationships, 23.8% (20 men) have been involved with their partners for up to one year; 27.4% have been involved with their partners for between 1 and 4 years; 23.8% have been involved for between 5 and 9 years; 14.3% have been involved for between 10 and 14 years while 10.7% have been involved for 15 years and over. Of the 165 females who identified that they were involved in relationships, 15.8% (26 women) have been involved with their partners for up to one year; 40% have been involved with their partners for between 1 and 4 years; 21.8% have been involved for between 5 and 9 years; 13.3% have been involved for between 10 and 14 years while 9.1% have been involved for 15 years and over. Table below shows a cross tabulation of relationship status and sexual activity. The majority of PLHIVs who are involved in relationships are sexually active: a. 97.2% of males whose partners are living in the household; b. 70% of males are living or working away; c. 82.4% of males who are involved in a relationship with a partner they do not live with; d. 86.2% of females whose partners are living in the household; e. 77.8% of females whose partners are living or working away; and f. 81.8% of females who are involved in a relationship with a partner they do not live with. 23

24 Of the 99 males who list their relationship status as single, 57.6% (57 men) stated that they are not sexually active. Of the 123 women who listed their relationship status as single, 81.3% (100 females) stated that they are not sexually active. (Note that respondents were, generally, uncomfortable with answering this question and it is, therefore, difficult to assess whether the data is reliable.) Table Sexually Active by Relationship Status Sex Yes No Total Male Married or living with someone and partner is currently living in household 97.2% 2.8% 100.0% Married or living with someone and partner is temporarily living/working away 70.0% 30.0% 100.0% In a relationship but not living together % 17.6% 100.0% Single % 57.6% 100.0% Divorced/Separated % 66.7% 100.0% Total % 37.9% 100.0% Female Married or living with someone and partner is currently living in household 86.2% 13.8% 100.0% Married or living with someone and partner is temporarily living/working away 77.8% 22.2% 100.0% In a relationship but not living together % 18.2% 100.0% Single % 81.3% 100.0% Divorced/Separated % 40.0% 100.0% Widow/Widower % 80.0% 100.0% Total % 45.2% 100.0% Transgender In a relationship but not living together %.0% 100.0% Single % 100.0% 100.0% Total % 50.0% 100.0% GAPS IN THE DEMOGRAPHIC DATA As presented, the demographic data shows the following gaps: 1. The study included only a very limited number of PLHIVs who identified themselves as transgender. The country team may decide that a separate, focused, study is required. 2. There was very low representation of young persons and the pre-designated subpopulations n the study. Focus groups, case studies and further quantitative enquiries are important for supplementing the data. 3. In further studies, particular attention should be paid to the experiences of PLHIVs who are living with disabilities. It was difficult to arrange for discussions with this category of respondents; however, anecdotal evidence suggests that these persons suffer multiple forms of discrimination and feel especially powerless to influence policies and programmes. 24

25 4. Children were not included in this study. However, a separate investigation of whether and how PLHIVs under 16 years of age experience stigma and discrimination is necessary for comprehensive policy and programme responses. 5. The data shows a comparatively high proportion of PLHIV within the sample living in small towns and villages. More work is required to assess (a) the extent to which HIV is concentrated in small towns and villages (compared with other areas), as well as the underlying reasons for this; and (b) to evaluate migration patterns among PLHIVs post diagnosis, as well as the underlying reasons for these. 25

26 SECTION 3: PERCEPTIONS AND EXPERIENCES OF STIGMA AND DISCRIMINATION 3.1 BACKGROUND The variables named above were used to evaluate differing dimensions of stigma and discrimination. However, it is necessary to assess the responses against the background of disclosure or non-disclosure of persons HIV status. The findings suggest that PLHIVs are hesitant to disclose their status, particularly to persons outside of their families. Forty one (41) percent of the females who responded, compared with 36.3% of the males had disclosed their status to their partners. Twenty one (21) percent of the women who responded had not told their partners, compared with 11.7% of the men. In a relatively small proportion of cases (1.4% of females and 2.8% of males), partners were told with consent. A somewhat larger percentage of partners were informed without the PLHIV s consent (9.5% of females and 7.3% of males). Persons appeared less inclined to tell their dates (16.2% of female and 17.3% of male respondents had informed their dates). Within families, a comparatively large percentage of PLHIVs had told adult members (54.8% of female respondents and 55% of the male respondents). There were cases where someone else had told these adult family members; some with the PLHIV s consent (2.7% of females and 3.3% of females) and others without consent (13.7% of female respondents and 10.0% of males). In 25.1% and 27.8% of the cases, females and males, respectively, claimed that adult members of their family did not know their status. Also, within families, comparatively less PLHIVs had disclosed to children than to adult members (39.4% of female respondents and 29.4% of male respondents respectively had told children themselves). In a few cases, someone else had told the children, with consent (1.4% of females and 1.7% of males) and without consent (9.1% of females and 2.8% of males). In summary, there is less disclosure to persons outside of the family; that is, except for other PLHIVs, health care providers and social workers. The data shows the following: 1. PLHIVs (whether men or women) do not disclose their status to their friends and neighbours; thus, significant proportions of friends and neighbours either do not know or were informed without consent. 2. PLHIVs do not disclose their status to their employers, clients, religious leaders or community leaders. 3. Compared with their willingness to disclose to persons within the communities, employers, clients and church leaders, PLHIVs (45.3% of female respondents and 42.6% of male respondents) appeared more comfortable with disclosing to other PLHIVs. 4. Perhaps because of necessity, comparatively high proportions of PLHIVs (55.6% of female respondents and 59% of male respondents) in the sample had disclosed to health care workers. Note, however, that health workers were also informed with consent (7.5% of female respondents and 17.3% of male respondents) and, significantly, without consent (27.8% of female respondents and 4.3% of male respondents) 5. Similarly, 57% of female respondents and 55.7% of male respondents had disclosed to social workers. As with health care workers, social workers were also informed with and without consent. Throughout the course of the interviews and in subsequent focus groups, PLHIVs explained that fear was the basis for their non-disclosure. In one focus group of young persons living 26

27 with HIV, aged years, the interviewees explained that they were hesitant to tell their entire family; they, therefore, opted to disclose only to the trusted relations: Most of us can t make our family know. Some want nothing to do with me when I tell them. I am more comfortable telling my aunt than my mother. Moreover, respondents claim that young PLHIVs who live in inner-cities and poor areas are given little information about the types of support available: At clinic, they don t tell you about support. People living in the ghetto have to leave their areas. It s a terrible disgrace when you have HIV; they say you have AIDS. It s better that it stays behind doors than come out One young lady told of how members of her community found out about her status and the manner in which they responded: It spread because a text came from the soldier camp (her boyfriend is a soldier) that my boyfriend had HIV. People then started telling me: You have AIDS, you must delete yourself. Other people call me: Walking dead 3.2. PERCEPTIONS AND EXPERIENCES OF SOCIAL EXCLUSION BY SEX It is against the background noted above that the findings on PLHIVs perceptions and experiences of exclusion, harassment and assault must be evaluated. For example, respondents were asked how often they perceived that they had been left out of social gatherings over the last 12 months. The results are displayed in the table below. The vast majority of males and females noted that they had not been left out of social gatherings. The earlier analysis indicates that it is important to be cautious in interpreting these results since some of these social gatherings may have taken place in communities, including religious settings, where persons were unaware of the respondents status. Table Perceptions of Exclusion by Sex (n=507) Left out of any social gatherings or activities Never Once A few times Often Not sure/dk Total Gender Male % 1.6% 6.8% 4.7% 1.1% 100.0% Female %.6% 6.1% 5.7% 1.0% 100.0% Transgender % 33.3%.0%.0%.0% 100.0% Total % 1.2% 6.3% 5.3% 1.0% 100.0% When the data is disaggregated by income group, the results indicate that men and women in the lowest income categories had the highest proportions of respondents who claimed both that they had never been left out of social gatherings and that they had been left out at least once (See Tables and below). 27

28 Explaining Income Categorisations Following the guidelines for reporting, the lowest income category comprises PLHIVs whose incomes fall between 0 and 75% of the median amount for the sample. The middle income category comprises PLHIVs whose incomes fall between 76% and 150% of the median amount for the sample. The highest income category comprises PLHIVs whose incomes fall at and above 151% of the median amount in the sample. The median value for the sample $15000 Table Left Out of Social Gatherings and Activities By Income (Male) N=158 Income monthly Sex Lowest Middle Highest Total Male Never % 17.5% 38.0% 100.0% Once % 50.0%.0% 100.0% A few times % 9.1% 45.5% 100.0% Often % 12.5% 25.0% 100.0% Total % 17.1% 37.3% 100.0% Table Left Out of Social Gatherings and Activities By Income (Female) Female Never % 16.4% 28.0% 100.0% Once %.0%.0% 100.0% A few times 60.0% 20.0% 20.0% 100.0% Often % 21.4% 21.4% 100.0% Not sure/dk % 100.0%.0% 100.0% Total % 17.1% 26.8% 100.0% Reasons for social exclusion by sex Importantly, of the persons who thought that they had been excluded from social gatherings, a higher proportion of women than men (40% compared with 10.9%) considered this to be because of their HIV status. A notable percentage of men (16.3%), in contrast. thought that they were excluded for another reason. Only one transgender responded to this query and concluded that the social exclusion experienced was because of status. Table Reasons for Social Exclusion by Sex 28

29 (N=55) If so, do you think this was one of these categories Because of your HIV status Both because of your HIV status and reason Total For another reason Not sure why Sex Male Count % 10.9% 16.3% 3.6% 3.6% 34.5% within If so Female Count % 40% 10.9% 1.8% 10.9% 63.6% within If so Transgender Count % within If so 1.8%.0%.0%.0% 1.8% Total Count % within If so 52.72% 27.27% 5.45% 14.54% 100.0% 3.3 EXPERIENCES OF GOSSIP, VERBAL INSULT, PHYSICAL HARASSMENT AND PHYSICAL ASSAULT BY SEX In the tables below, slightly greater proportions of males and females felt that they were being gossiped about than those who felt that they were not. Again, more females than males felt they were being gossiped about. Of those who thought they were being gossiped about, the majority indicated that this occurred either a few times or often. For males, females and transgenders, experiences of being verbally insulted, harassed or threatened were much less. Most (74.3% of the men who responded to this query and 67% of the women who responded) had never been verbally insulted, harassed or threatened. However, 83% of males who had been verbally insulted, harassed or threatened and 79% of females had experienced this either a few times or often. Of the three transgenders, 1 reported never experiencing gossip; 1 that this had occurred often and 1 that this had only been experienced once. Table Perceptions/Experiences of Gossip by Sex N=497 29

30 How often have you been aware of being gossiped about Never Once A few times Often Not sure/dk Total Sex Male Count % within 47.0% 3.8% 23.2% 23.8% 2.2% 100.0% Sex Female Count % within 43.4% 6.1% 19.1% 30.4% 1.0% 100.0% Sex Transgender Count % within 33.3% 33.3%.0% 33.3%.0% 100.0% Sex Total Count % within Sex 44.7% 5.4% 20.5% 28.0% 1.4% 100.0% Table Perceptions/Experiences of Verbal Harassment by Sex N=497 Have you been verbally insulted, harassed and/or threatened Never Once A few times Often Not sure/dk Total Sex Male Count % within 74.3% 4.3% 12.3% 8.6%.5% 100.0% Gender Female Count % within 66.8% 6.8% 13.4% 12.7%.3% 100.0% Gender Transgender Count % within 100.0%.0%.0%.0%.0% 100.0% Gender Total Count % within Gender 69.8% 5.8% 12.9% 11.1%.4% 100.0% When the responses are evaluated using income categories, the data shows that perceptions of being gossiped about spread across groups, although, in general, the majority of persons who feel gossiped about or not gossiped about are in the lowest income groups. Significantly, of the women who felt they were being gossiped about, 38% thought that this was because of their HIV status; 4% thought that there was another reason and 4% that it was because of their status and another reason. Fifteen (15) percent claimed to be unsure of the reason. In comparison, 34% of the men who thought they were being gossiped about claimed that this was because of their status; 5.2% thought there was another reason; 4.7% that it was because of their status and another reason and 5.8% were unsure. This trend continues in assessments of the reasons for verbal insults, harassment or threats. Twenty five percent (25%) of the women who claimed to have experienced verbal harassment concluded that this was because of their HIV status compared with 17% of the men. Three percent (3%) of the women thought there was a reason apart from HIV; 2% thought that this was both because of HIV and another reason and 1% were unsure. Among men, 4.5% felt there was another reason for their harassment and 2.2% thought this was both because of HIV and another reason. Only 0.6% claimed to be unsure of the reason(s). The tables below show that the vast majority of males and females as well as all transgenders interviewed had never been physically harassed, threatened or assaulted. Of those who had been physically harassed or assaulted, a greater proportion had experienced these either a few times or often as opposed to once. 30

31 Table Frequency of Physical Harassment and/or Threats by Sex N=506 In the last 12 months, how often have you been physically harassed and/or threatened Never Once A few times Often Total Sex Male Count % within Sex 90.5% 3.7% 3.7% 2.1% 100.0% Female Count % within Sex 86.0% 3.8% 6.7% 3.5% 100.0% Transgender Count % within Sex 100.0%.0%.0%.0% 100.0% Total Count % within Sex 87.7% 3.8% 5.5% 3.0% 100.0% Table Frequency of Physical Assaults by Sex N=501 In the last 12 months, how often have you been physically assaulted? Never Once A few times Often Total Sex Male Count % within Sex 94.1% 2.7% 2.1% 1.1% 100.0% Female Count % within Sex 91.0% 3.2% 2.9% 2.9% 100.0% Transgender Count % within Sex 100.0%.0%.0%.0% 100.0% Total Count % within Sex 92.2% 3.0% 2.6% 2.2% 100.0% Of the females who responded, 9.5% claimed that they experienced physical harassment because of their HIV status while 2.3% thought there was another reason; 1% attributed their experiences of physical harassment both to HIV and another reason. Of the males who responded, 5% claimed that they experienced physical harassment because of their HIV status; 1.1% felt that there was another reason; 1.6% to both HIV and another reason and 2.2% were unsure. The notes below are important because they reveal PLHIVs descriptions of some of the other reasons for their discrimination. It is clear that some of the reasons may be related to other distinct causes but there are other reasons that do not appear as unrelated to HIV as the respondents (the majority of whom are females) believe and indicate. This raises questions about how the respondents understood the question and the extent of the respondents knowledge of HIV. It also reveals some of the difficulties of basing assessments primarily on perceptions. PLHIV Notes on the Other Reasons People use to discriminate a long time ago but I overcome it and I tell the people them say me have AIDS but them stop now (Male) Because I am not working and people don't want me to come near them (Male) Because I am not working and unable to afford cost of living (Male) Because I used to associate myself with sex worker (Male) Because my foot is sick (Male) Because of my family background and jealousy (Male) Son urinated on the chair (Male) People discriminate against me because it is the work of the Devil (Male) People saying he should not contract HIV (Male) Working among other PLHIVs (Male) Poverty, being poor (Male) 31

32 Acting like she is better than people (Female) Anger problems (Female) Another woman wanted the house, this because we shared the same man of the past (Female) Because I am not working and my child is not going to school when she should (Female) Because baby's father left (Female) Because I am too slim (Female) Because I have to beg money to stay alive (Female) Because I was raped (Female) Because of my race (Female) Because we had a disagreement (Female) By looking on me (Female) I got sick and was losing weight (Female) I was a strip dancer (Female) I was discriminated against because of my partner (Female) Because of partner s disclosure in public (Female) My friends aren't educated (Female) People are trying to find faults with her (Female) People assume that I am better than others (Female) People just discriminate for no special reason (Female) People see you and talk about you (Female) The man who gave me HIV was a gay so whenever his friend is there they always talk about it (Female) Because the breaking out on skin (Female) Not sure, gossip and point fingers after husband died (Female) Physical Assault Twenty-eight (28) females noted that they were physically assaulted. Fourteen (14) of these (50%) considered it to be because of their HIV status while 9 (32%) said there was another reason; 3 (10.7%) thought that it was because of both HIV and another reason and 3 (10.7%) were unsure. Eleven (11) men said they were physically assaulted. Six (6) of these men thought this occurred because of their status; 3 for another reason; 1 because of HIV and another reason while 1 of the 6 was unsure. Despite the weight of the ratio of females to males on the findings, it does appear safe to conclude that, in general, more females than males experience stigma and discrimination and/or perceive this to be the case. The findings correspond with other data on the prevalence of gender-based violence in Jamaica, which show that this is levied disproportionately towards females. Nine (9) of the 28 women who reported being physically assaulted claimed that the perpetrators were their husbands or partners; three (3) claimed that another member of the household assaulted them and 12 that the offenders were persons who are outside of the household but known. Among the 11 men who reported, the major perpetrators of assault were unknown, followed by known persons outside of the household. 3.4 Perceptions and Experiences of Exclusion, Gossip, Harassment and Assault by Location It is worthwhile to question why the majority of males and females who perceive that they are/were gossiped about or harassed (verbally and physically) claim to have experienced these either a few times or often. Do these individuals belong to particular subpopulations, that are being targetted? Are they located in particular areas? While the numbers of PLHIVs who identified with defined subpopulations were too small for meaningful analysis, it was possible to assess the how perceptions and experiences varied by location. 32

33 The tables in Annex 3 show women s experiences and/or perceptions of exclusion, of being gossiped about and of verbal and physical harassment by location. The tables show that, overall, a greater number of women who claimed to experience social exclusion or gossip live in rural areas and small towns, as opposed to urban areas. This is not a startling finding since there are larger populations of PLHIVs in the sample who are Textbox Case Study Abuse: One Woman s Tale of Torment Getting to know him, he told me that if any woman gave him the virus, he would kill her so I was afraid to tell him. I didn t tell him. It was clinic that wrote and asked him to come in. He asked me why I didn t tell him myself. He kept threatening and saying he will kill me. He said he will throw me in a pit toilet and no one will know. He monitors where I go. Whenever my friends are having a party, he wants to know where I am. If I am late, he threatens. Because of this, I am afraid to go out. Now that I am out, it is hard for me to go in. You know when you get release, it is hard to go back. He has the virus but I gave him. He curses me all the time that I gave him and he can t do what he wants to. I stay with him because I used to run around a lot and that is how I got HIV. I have to just batter in his hands alone. living in small towns and villages. Yet, it is noteworthy that perceptions and experiences of gossip are disproportionately higher in small towns and villages and rural areas than in urban centers. Again, this is consistent with the known dynamics of village life. It may also reflect lower levels of HIV awareness in these areas. Similarly, of the sample, the largest proportions of women who experience verbal and physical harassment and physical assault live in small towns, followed by rural areas and then urban centres. However, care should be taken in interpreting the data. Besides recognizing that the results are likely to be skewed given the higher proportions of persons in the sample who live in small towns and villages and rural areas compared with those who reside in urban areas, it is also not prudent to assume that all women s experiences of exclusion and harassment were confined within these areas. For example, a woman who lives in a village may have experienced harassment when she visited the urban centres. Nevertheless, this is a subject of enquiry that is worthwhile to pursue. The evidence presented on the source of physical assault does indicate that this is largely experienced within the household or from persons outside the household who are known. (Women) If so, who physically assaulted you Table My husband/wife/ partner Another member of the household Persons outside of the household who is/are known to me Physical Assault by Location (Women) N=27 Is your household in any of these locations? A small town or A large town or A rural area village city Total % 40.0%.0% 33.3% % 100.0%.0% 100.0%.0% 13.3%.0% 7.4% % 46.2% 15.4% 100.0% 62.5% 40.0% 50.0% 48.1% Unknown persons % 33.3% 66.7% 100.0%.0% 6.7% 50.0% 11.1% Total % 55.6% 14.8% 100.0% 100.0% 100.0% 100.0% 100.0% 33

34 Like the women, a higher proportion of male respondents live in small towns and rural areas rather than in urban areas. This must, necessarily, qualify the findings, which are similar to those reported for women; that is, the majority of persons who noted that they had experienced exclusion, harassment or assault are located in small towns and rural areas. The principal discrepancy is that a greater proportion of men reported being assaulted by persons outside of the household who are both known and unknown. This is not surprising; it is consistent with what is known about gender dynamics in Jamaica, particularly that gender-based violence is more commonly directed against females rather than males. Nevertheless, it is important to note that the numbers of responses to this query are too small to be used as a basis for generalized conclusions. Textbox 3.4.2: Excerpt from Case Sudy: Small Town Dynamics XXX told everybody I have AIDS and they scorned me. He deduced this because I was first fat then got slim and things started coming out on my body. He threw stones at me and told the police I am diagnosed with AIDS. My sister is rough with me. I have no one to help me. They see me in difficulty since I live in their house but they don t give me enough to eat. I don t work. They don t use my utensils. People keep their children away from me. I had two friends. I trusted them but they take it and curse me. They tell me I have AIDS. Because of this, I get more and more stressed. I don t know how I contracted it. I did an operation in St Ann s Bay Hospital and they said nothing. I took another test and it was there. I now have it. It s probably from my boyfriend and he is not telling me. The shame I feel! Note that sometime after the case study was completed, this interviewee reported that she was a sex worker and had been in prison. Table Physical Assault by Location (Men) n=10 Is your household in any of these locations? A rural area A small town or village A large town or city Total My husband/wife/ Count partner % within If so, who.0% 100.0%.0% 100.0% physically assaulted you % within Is your.0% 20.0%.0% 10.0% household in any of these locations? Persons outside of the Count household who is/are % within If so, who 50.0% 50.0%.0% 100.0% known to me physically assaulted you % within Is your 50.0% 40.0%.0% 40.0% household in any of these locations? Unknown persons Count % within If so, who 40.0% 40.0% 20.0% 100.0% physically assaulted you % within Is your 50.0% 40.0% 100.0% 50.0% household in any of these locations? Total Count % within If so, who physically assaulted you 40.0% 50.0% 10.0% 100.0% 34

35 Textbox Communities The Importance of Focusing on Small Towns and Rural/Deep Rural The study made deliberate efforts to include PLHIVs who live in small towns and villages and deep rural areas. This was very difficult and, in some cases, impossible to achieve in some parishes. In Trelawny and Portland, particularly, attendance was low. Some PLHIVs reported that they would have preferred to travel to another parish and to urban centres rather than visit a research site that is located close to or where they reside. Only 2 participants attended the research site in Falmouth, though interviews related seeing persons pass up and down, looking at the building and then scuttling away. In rural Manchester, where the social worker apparently has very close working relationships with rural residents, it was possible to host a focus group discussion that focused on the some of the social dynamics within rural communities. A selection of comments from that focus group is presented below, as the respondents told it. Most interviewees described the gossiping that is prevalent in these communities and the strength of character required to withstand it. One woman told of how she fights verbal fire with verbal fire: In my community, people know I was a fat woman and when I get slim they say I have AIDS. I then say you mumma have (your mother has) it; straight talk! Because I am so aggressive, that pushes them off. Mi never go through tings (I never went through things) where people pass remarks. Even my mother asked if she going ketch it (is going to catch). From long time I know myself as a selfish person but then noticed that persons were ignoring me. That didn t bother me. I was comfortable disclosing. Other persons lacked this confidence and displayed it throughout the course of the focus group. For example, the discussion was convened in small room on the grounds of the hospital. Despite the heat, one woman insisted on closing all the windows so that no passerby could overhear. I want to close all the windows since people can hear; I would rather bun up! Some participants described the abuse they encountered: Some people abuse you and throw stones at you. Nobody wants to touch you and eat from you Persons isolate themselves from you and make all sorts of assumptions. I was discriminated against when the doctor found out. He didn t deal with it well. Then my friends told everyone: Lawd (Lord) Jesus Christ, XXX have AIDS! My husband died fifteen years now. He was a soldier. In the district where I live, it doesn t matter again. When I first found out, all the soldiers backed off; nobody wanted to put him in the jeep. People call me names in the community: SoldjieAIDSy. I was working at this place 13 years and then they just push me out. I was a janitor. I was sweeping away water and my hands and feet couldn t meet. They said I had a stroke and then the principal decided I had to go. 3.5 PERCEPTIONS AND EXPERIENCES OF EXCLUSION, GOSSIP, HARASSMENT AND ASSAULT BY AGE, LENGTH OF TIME LIVING WITH HIV, INCOME AND EMPLOYMENT STATUS This subsection concentrates on highlighting key findings where the data is disaggregated by age, length of time living with HIV, income and employment status. Considerable time was spent on analyzing the relationship between sex and stigma/discrimination since this has long been a major underlying development challenge in Jamaica. It is somewhat more difficult to predict the relationship between age and stigma/discrimination as much less work has been done on this subject. However, one of the major difficulties with analyzing how levels of stigma and discrimination affect differing age groups is that very few PLHIVs within the 16 to 19 years age category and lesser 35

36 numbers than desired of the year old PLHIVs participated in the study. Considerably more work is required to assess the situation and needs of these youth groups of PLHIVs. Table Left out of any social gatherings or activities by age n=508 Left out of any social gatherings or activities Never Once A few times Often Not sure/dk Total 16-19yrs yrs yrs yrs yrs yrs and over Total The data above shows that the majority of respondents have not experienced exclusion. Only 65 of the 508 respondents (12.7%) were sure that they had been excluded from social activities. Of these, more persons in the 30-39, and 50 and over age groups noted that they had been left out of social gatherings; however, no firm conclusions about the prevalence of exclusion, harassment and assault across age groups can be made since the younger age groups were under-represented in the sample. One noteworthy observation is that where there were perceptions and experiences of exclusion, the majority of PLHIVs recount that this occurred more than once. Thus: 1. Fifty two percent (52%) of the 21 PLHIVs from the age group who reported that they had experienced exclusion said that this occurred a few times while 43% had experienced this often; 2. Fifty six percent (56%) of PLHIVs from the age group who had experienced exclusion said that this occurred a few times and 31% noted that they experienced this often; 3. Eighty six percent (86%) of respondents 50 years and over who had experienced exclusion had done so a few times and often. These patterns continue in analyses of how differing age groups have experienced gossip, verbal harassment, physical harassment and physical assault. Experiences/Perceptions of Gossip Half (50%) of the 6 respondents in the age group reported that they have never felt gossiped about. The remaining respondents noted that they felt that this had happened either a few times (1 person reporting) or often (2 persons reporting). Again, the numbers of respondents are too low for meaningful conclusions. In the age group, 18 of the 34 respondents (53%) had never experienced gossip; however, of the 15 PLHIVs who had experienced gossip, 14 (93%) had experienced this either a few times or often. Not unexpectedly, the numbers of persons who experienced gossip increased with age since the older age groups were better represented in the sample. Therefore, 55% of PLHIVs in the age group (47 persons responded); 61% of PLHIVs in the age group (173 persons responded); 56% of the age group and 41% of the age group felt that they were gossiped about at least once. 36

37 The table below shows perceptions of the reasons for gossip by age group. Of the persons who felt they had been gossiped about at least once, 62% believed that this occurred because of their HIV status. These perceptions were highest within the age group: years. Again, this may largely reflect the disproportionate numbers of PLHIVs aged who were represented in the sample. Table Reasons for Gossip by Age n=268 Age Number of respondents Numbers who felt gossiped about at least once Because of HIV status For another reason Both because of your HIV status and reason Not sure why Total Experiences/Perceptions of Verbal and Physical Harassment As the majority of respondents were between 30 and 39 years, it is not surprising that this age group reported the most cases of verbal and physical harassment. The tables below confirm the trends noted: where verbal and physical harassment are experienced or perceived, these tend to occur either a few times or often in the majority (overall 80%) of cases. Table Experiences of Verbal and Physical Harassment How old are you N=498 Have you been verbally insulted, harassed and/or threatened Never Once A few times Often Not sure/dk Total 16 19yrs % 16.7%.0%.0%.0% 100.0% 20 24yrs % 8.8% 8.8% 5.9%.0% 100.0% 25 29yrs % 10.4% 16.7% 8.3%.0% 100.0% 30 39yrs % 3.5% 12.2% 13.4%.0% 100.0% 40 49yrs % 6.3% 15.4% 9.1%.7% 100.0% 50yrs and over % % % % % % Total % 5.8% 12.9% 11.0%.4% 100.0% 37

38 Compared with reports of verbal harassment, lesser numbers of persons across all age groups claimed to have been physically harassed or threatened (no one between 16 and 19; 6 of the 35 (17%) respondents between 20 and 24; 6 of the 48 respondents between years (12.5%); 19 of the 174 respondents between 30 and 34 years (5.78%); 16 of the 147 respondents (10.88%) between 40 and 49 and 15 of the 97 (15.4%) respondents who were 50 years and over. There were also comparatively less cases of physical assault: 1 YPLHIV between 16 and 19 years; 2 of the 33 respondents between 20 and 24 (6%); 6 of the 48 respondents between years (12.5%); 10 of the 173 respondents between 30 and 34 years (5.78%); 10 of the 145 respondents between 40 and 49 (6.89%) and 9 of the 97 respondents (9.27%) who were 50 years and over. The data can be presented in another way: 1. Approximately 28% of the PLHIVs who responded to this query had been verbally harassed and 77% of these claimed that the cause for this harassment was their HIV status (See Table 3.5.4). Table Reasons for Verbal Harassment N=135 Age Number of respondents Numbers who felt verbally harassed at least once Because of HIV status For another reason Both because of your HIV status and another reason Not sure why Total Approximately 12% of the PLHIVs who responded to this query had been physically harassed and 65% of them claimed that the cause for this harassment was their HIV status (See Table 3.5.5). Table Reasons for Physical Harassment n=58 Age Number of respondents Because of HIV status Numbers who felt physically harassed at least once For another reason Both because of your HIV status and another reason Total Not sure why 38

39 1. Approximately 8% of the PLHIVs who responded to this query had been physically assaulted and 50% of them claimed that the cause for this harassment was their HIV status (See Table 3.5.6). Table Reasons for Physical Assault n=40 Age Number of respondents Because of HIV status Numbers who were physically assaulted at least once For another reason Both because of your HIV status and another reason Not sure why Total As noted above, in the majority of cases, the perpetrators of assault are known and, given the weight that must be given to the ratio of males to females who participated in the study, women appear to be the major victims of assaults. Perceptions and Experiences of Harassment and Assault by Income Group Table Physical Harassment and Income Group: Women n=257 Income monthly Sex Lowest Middle Highest Total Female Never % 17.3% 28.3% 100.0% Once % 10.0% 20.0% 100.0% A few times % 20.0% 20.0% 100.0% Often % 16.7%.0% 100.0% Total % 17.1% 26.8% 100.0% The table shows the proportions of women within each income group who claimed not to have experienced physical harassment as well as those who reported that they have experienced harassment. Of the sample, women in the lowest income group are the most significant in all categories; however, this cannot be regarded as a conclusive finding since women in the lowest income group comprise 56% of the sample. Of the 28 women who had been physically harassed (see Table 3.5.8), 77.7% of those in the lowest income group (that is, of the total of 18 persons) attributed this to their HIV status, either wholly or in part; similarly, 60% of women in the middle income group 39

40 (of 5 persons in total) and 80% of women in the highest income group (of the total of 5 persons) said that they had been harassed because of their HIV status. Table Reasons for Physical Harassment n=28 Income monthly Sex Lowest Middle Highest Total Female Because of your HIV status 12 (63.1%) 3(15.7%) 4 (21%) 19(100%) For another reason 4 (66.6%) 2(33.3%) 0 6(100%) Both because of your HIV status and reason 2(100%) (100%) Not sure why 0 0 1(100%) 1(100%) Total 18 (56%) 5 (17.6%) 5(26.4%) 28(100%) As noted in the case of physical harassment, Table shows the proportions of each income group of women who claim not to have experienced physical assault and those who have. Women in the lowest income group are the most significant in all categories. Table Physical Assault and Income: Women n=255 Income monthly Low Middle Highest Female Never % 17.0% 26.8% 100.0% Once % 12.5% 12.5% 100.0% A few times % 33.3% 16.7% 100.0% Often % 16.7% 33.3% 100.0% Total % 17.3% 26.3% 100.0% In the chart below, women across income groups were able to identify the person who assaulted them as someone they know either within or outside of the household. Of the 12 women in the lowest income group who acknowledged that they had been physically assaulted, 50% believed that this was because of their HIV status; 42% were persuaded that there was another reason and the remainder was unsure of the reason (s). Of the 4 middle-income women who stated that they had been physically assaulted, 2 attributed this to their HIV status either wholly or in part and the remainder to another reason. Of the 40

41 4 highest income women who recorded physical assault, 3 noted that this was because of their HIV status and the remainder was unsure. Physical Assault and Employment Status Table indicates that across the employment categories in the sample, women doing casual or part time work and those who are selfemployed had the highest percentages (though not absolute numbers) of female PLHIVs who had suffered physical assault. This is followed by the category: women who are unemployed or not working at all. Table Physical Assault and Employment Status: Women Textbox How the Length of Time Living With HIV appears to influence perceptions and experiences of Exclusion, Gossip, Harassment and Assault. Perceptions and/or experiences of exclusion, gossip, verbal harassment, physical harassment and assault are more prevalent among persons who have been living with HIV for 1-4 years and 5-9 years respectively. Thereafter, perceptions and experiences of exclusion and harassment appear to taper off. The survey did not probe the reasons for this; it is a subject that merits exploration. However, there are anecdotes that suggest that people who are living with HIV for very long periods become less affected by harassment and may not be as subjected to harassment, as people and particularly their families--see them as less of a problem. I have been diagnosed for over 15 years. Most discrimination is how my family first reacted. They found out with my first son first. My mother called me and said you know say you have AIDS.I went into hiding and denial for about 9 years. I didn t go to find out. Only after that when I got pregnant again did they check again. Gender Female Full time employment as an employee n=310 In the last 12 months, how often have you been physically assaulted? Never Once A few times Often Total %.0% 2.9%.0% 100.0% Part time employment as an employee Working full time but as an employee and self employed Doing casual or part time work and self employed Unemployed/not working at all %.0%.0%.0% 100.0% % 4.8%.0%.0% 100.0% % 10.0% 7.5% 5.0% 100.0% % 2.7% 2.7% 3.8% 100.0% Student %.0%.0%.0% 100.0% Total % 3.2% 2.9% 2.9% 100.0% 3.6 FAMILY EXCLUSION Annex 3B provides the breakdown of responses to queries about the extent to which families exclude PLHIVs. Responses were evaluated with respect to gender, age, key population, location, length of time living with HIV, and income. In the majority of cases, there are reports of no exclusion. Of the respondents, more males (4.2%) said they had been excluded once; that is; compared to 1% (3 persons) of women. Slightly more women had been excluded a few times. All 3 transgenders reported that they had never been excluded. 41

42 None of the year olds reported being excluded by their families, although this cannot form the basis for generalized comments. Note, for example, that the MSM youth who participated in the focus group told tales of family exclusion. Most cases of exclusion were reported by PLHIVs within the and age categories and among persons living in small towns and rural areas. Persons who have been living with HIV for less than and up to one year reported no cases of family exclusion. Similarly, persons living with HIV for 15 years and over noted that they were not excluded. (Here, it is possible that PLHIVs were excluded when they first disclosed to their families. However, family prejudices may have abated as people realize that HIV does not taint and destroy in the ways they imagined. Progressively more cases of family exclusion are reported from persons living with HIV from between 1 and 4 years and years. Reports of family exclusion are more prevalent in small towns and rural areas and among persons who have had primary or secondary education. Textbox Case Study: Family Exclusion An old and frail woman broke into tears in one session. The interviewer was concerned and suggested that she speak with the social worker. The social worker was surprisingly dismissive, commenting that there was little she could do since that woman always cries. The interviewer persisted and the elderly woman told her story. She explained that she has been going through a lot of discrimination. All her utensils at home have been labeled. They have stoned her house in XXX. The whole community has told her that she has a life sentence. No one speaks to her; she is left alone. When she walks on the road, people say unkind things. In church, the priest does not allow her to sup from the cup with others. Hers is provided separately. She takes her medication but sometimes there is no food. Her son is the most discriminating: If I cook for him, he doesn t eat. He curses me like a dog. He tells me See you dutty man come yah; you dutty nasty man (Your dirty man has come; your dirty, nasty man) Also if I go into a taxi and the taxi guy recognizes me, him say mi naw carry you (he says I am not carrying you). Sometimes, mi haffi beg fi get money (Sometimes, I have to beg in order to get money). After the session, the interviewer is visibly shaken. She explains that she has difficulty conceptualizing solutions for this woman, who has been left entirely without support, including from the professional who is commissioned to help. The case study above describes relationships between multiple and pervasive forms of poverty and discrimination, including within families. In the tables below, it is clear that the majority of respondents with the three income groups have never been left out of family activities. However, the proportions of PLHIVs who have been left out at least once are higher within the lowest income category. Table Left out of any family activities by Income n=418 Income monthly Lowest Middle Highest Total Never Count

43 % within Left out of any family activities 50.9% 16.8% 32.3% 100.0% % within Income 88.0% 87.5% 93.8% 89.7% Once Count % within Left out of any family activities 50.0% 37.5% 12.5% 100.0% % within Income 1.8% 4.2%.8% 1.9% A few times Count % within Left out of any family activities 66.7% 22.2% 11.1% 100.0% % within Income 2.8% 2.8%.8% 2.2% Often Count % within Left out of any family activities 62.5% 12.5% 25.0% 100.0% % within Income 6.9% 4.2% 4.7% 5.7% N/A Count % within Left out of any family activities 50.0% 50.0%.0% 100.0% % within Income.5% 1.4%.0%.5% Total Count % within Left out of any family activities 51.9% 17.2% 30.9% 100.0% % within Income 100.0% 100.0% 100.0% 100.0% Fifty eight percent (58%) of PLHIVs who provided reasons for family exclusion (22 of 38 respondents) attributed these to their HIV status wholly or partly. Of these, 15 of the 22 were in the lowest income category. Table Reasons for Family Exclusion by Income n=38 Lowest Middle Highest Total Because of your Count HIV status % within Reason for 70.0% 15.0% 15.0% 100.0% family exclusion % within Income 6.5% 4.4% 2.4% 4.9% For another Count reason % within Reason for 70.0% 10.0% 20.0% 100.0% family exclusion % within Income 3.3% 1.5% 1.6% 2.5% Both because of Count your HIV status % within Reason for 50.0% 50.0%.0% 100.0% and reason family exclusion % within Income.5% 1.5%.0%.5% Not sure why Count % within Reason for 33.3% 16.7% 50.0% 100.0% family exclusion % within Income.9% 1.5% 2.4% 1.5% Total Count % within Reason for 63.15% 15.7% 21% 100.0% family exclusion % within Income 100.0% 100.0% 100.0% 100.0% 3.7 RELIGIOUS EXCLUSION The majority of respondents in each category have never experienced religious exclusion. Eighty seven percent of the men who responded and 93% of women confirmed that they had not experienced exclusion in their religious settings. There was no difference between the numbers of males and females who had experienced religious exclusion. There were more reports of religious exclusion among persons aged 30-34; 40 to 49 and 50 years and over. Following the trends reported, there were more reports of religious exclusion from small towns and rural areas than large towns and cities. Furthermore, persons who have been living with HIV from 1-4 and 5-9 years reported more case of religious exclusion 43

44 compared with PLHIVs who were newly diagnosed and those living with HIV for 15 years and over. Persons with primary and then secondary education recorded more cases of religious exclusion than did persons without formal or with tertiary education. Differences across income groups were not significant. The study suggests the need for further concentrated study, not only among persons with primary and secondary level education but also among persons without formal and with tertiary level education. There is much to be learnt about how these different categories of persons negotiate their social contexts, such that some groups suffer more exclusion than others. SOME NECESSARY QUALIFICATIONS FOR INTERPRETING THE EVIDENCE Without an appreciation for the respondents approaches to disclosure and the reasons for them, it would be easy to conclude that PLHIVs rarely experience exclusion, harassment and assault. However, it is critical to interpret the findings in light of the following: Fear of discrimination is rampant and PLHIVs consider it prudent not to disclose their status in order to safeguard themselves. As respondents in once focusing group among MSMs explained: Some information is our death sentence If my family knows about this, I wouldn t have anyone. No one would bury me. Focus Group with Young People Living with HIV, November 16, 2011 In the Jamaica-specific questions, PLHIVs were asked what forms of discrimination they were most fearful of. The responses are noted below. Table Forms of Discrimination Most Fearful of by Sex n=74 Isolation Beatings House burning Neglect Other All Male Count % within Gender 18.4% 6.6% 7.2% 29.6% 14.5% 15.1% % within What forms of 43.8% 45.5% 26.8% 34.4% 37.9% 31.1% discrimination most fearful of Female Count % within Gender 12.9% 4.4% 10.7% 31.3% 13.2% 18.8% % within What forms of 54.7% 54.5% 70.7% 64.9% 62.1% 68.9% discrimination most fearful of Trans- Count gender % within Gender 33.3%.0% 33.3% 33.3%.0%.0% % within What forms of 1.6%.0% 2.4%.8%.0%.0% discrimination most fearful of Total Count % within Gender 15.0% 5.2% 9.6% 30.7% 13.6% 17.3% % within What forms of discrimination most fearful of 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% Some interviewees noted two or more variables: Table b Forms of Discrimination Most Fearful of by Sex Isolation and House burning Beating and House burning House burning and Neglect Isolation and Beating Isolation and Neglect Isolation Isolation Isolation House 44

45 Beating and House burning Beating and Neglect burning, Neglect Male Count % within Gender.7% 1.3% 2.0%.7% 3.3%.0%.7%.0% % within What forms 50.0% 33.3% 50.0% 50.0% 38.5%.0% 25.0%.0% of discrimination are you most fearful of Female Count % within Gender.4% 1.5% 1.1%.4% 2.9%.7% 1.1%.7% % within What forms 50.0% 66.7% 50.0% 50.0% 61.5% 100.0% 75.0% 100.0% of discrimination are you most fearful of Trans- Count gender % within Gender.0%.0%.0%.0%.0%.0%.0%.0% % within What forms.0%.0%.0%.0%.0%.0%.0%.0% of discrimination are you most fearful of Total Count % within Gender.5% 1.4% 1.4%.5% 3.0%.5%.9%.5% % within What forms of discrimination are you most fearful of 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% 100.0% The PLHIVs in the study named the following as other forms of discrimination: Scorn Afraid of being teased about my status Being discriminated because of spots on my skin Children being discriminated against Children being stigmatized at school Disgrace Fearful of death Fearful of God Gossip HIV related illnesses of the skin Hurt my kids Not being accepted in my community Stoning of house and shop and verbal abuse Therefore, it is fair to conclude that experiences of harassment and assault are less than may have been anticipated, in some part because many PLHIVs have not disclosed their status. Fears of the consequences of disclosure affect all segments of the PLHIV population but are more significant for some groups as opposed to others. These groups are at risk for multiple and compounded forms of discrimination. The study found that among these are MSMs, the youth, the elderly and women. I am fearful of people in my community knowing. They see things on people s skin and start to talk. Yesterday, the van from the hospital came to see someone. They say: See it deh; see IT deh; di van come give her her AIDS juck (There it is, there it is. The van has come to give her AIDS jab). Focus Group with Young People Living with HIV, November 16,

46 4 DISCRIMINATION FROM OTHER PLHIVs AND DISCRIMINATION AGAINST HOUSEHOLDS The focus on discrimination within the PLHIV community is important. For some persons, this is even more significant than discrimination between people living without and with HIV. Eighty five (85) percent of males and 80% of females have never experienced discrimination from others living with HIV. Fifteen (15) percent of females have experienced discrimination from their peers at least once, while 3.9% are unsure; 10.1% of males have experienced discrimination at least once, while 4.8% are unsure. When you an dem deh a meeting, you an dem a fren. Next time you see dem, dem tell somebaddy: Mi did buck deh gal deh down deh so. (When you are with them at meetings, you are friends. However the next time you see them, they tell someone: I saw that girl down there.) Focus Group with Young People Living with HIV, November 16, 2011 Contrary to the prevailing trend, a higher proportion of rural area residents (compared with persons who live within small towns) reported that they had been discriminated against by other PLHIVs. Two of the three transgender had experienced discrimination from other PLHIVs. Table Discrimination from Other PLHIVs by Sex n=499 In the last 12 months, have you been discriminated against by other people living with HIV Never Once A few times Often Not sure/dk Total Gender Male % 1.6% 6.9% 1.6% 4.8% 100.0% Female Transgender 80.5% 3.6% 6.8% 5.2% 3.9% 100.0% %.0% 33.3%.0%.0% 100.0% Total % 2.8% 7.0% 3.8% 4.2% 100.0% Table Discrimination from Other PLHIVs by Location n=495 Is your household in any of these location A rural area A small town or village A large town or city In the last 12 months, have you been discriminated against by other people living with HIV Never Once A few times Often Not sure/dk Total % 3.2% 6.5% 5.2% 3.9% 100.0% % 2.6% 7.0% 2.9% 5.1% 100.0% % 2.9% 8.8% 2.9% 1.5% 100.0% Total % 2.8% 7.1% 3.6% 4.2% 100.0% 46

47 Of the PLHIVs who had never experienced intra-group discrimination, the most significant proportion (51.4%) was from the lowest income group, followed by highest income earners (31.5%) and then middle-income earners. There were equal proportions (44.4%) of the lowest and highest income earners who had experienced discrimination from other PLHIVs a few times. Of the respondents who had experienced discrimination often, the lowest income earners recorded the highest percentages, as they did among PLHIVs who had experienced this only once. Table Discrimination from Other PLHIVs by Income n=411 Discriminated against by other people living with HIV Income monthly Lowest Middle Highest Total Never % 17.0% 31.5% 100.0% Once % 27.3% 18.2% 100.0% A few times % 11.1% 44.4% 100.0% Often % 7.7% 23.1% 100.0% Not sure/dk % 37.5%.0% 100.0% Total % 17.0% 31.1% 100.0% It is noteworthy that persons across all income levels experience discrimination from other PLHIVs. The quantitative evidence is insufficient to portray the depth of people s experiences, including the psychological consequences of being discriminated against by persons who, in principle, belong to the same community. This study has suffered, somewhat, from the inability to properly dissect and analyze the experiences of various subpopulations. However, the focus group discussions with MSMs vividly depict some of the intersectionalities among PLHIVs, as well as the various forms of rejection and psychological pressure that result. Textbox Focus group with MSM PLHIVs Understandings of Stigma and Discrimination There are 8 participants in this focus group. It was clear that most knew each other. Participants were nervous about how the information would be used. Therefore, no names were called in the room. Instead, persons were identified using numbers. Interviewees were asked how they understood the terms: stigma and discrimination. The following is a list of their responses: Discrimination is against something, the whole homosexual thing and you go against it.. Stigma is something that sticks on you something that will follow you. Stigma refers to the label someone puts on you.whether they heard it or not. Discrimination is the attack that may happen because you are stigmatized. 47

48 Experiences of Stigma and Discrimination The respondents were asked about their first experience of stigma and discrimination and each person told a story. Snippets from these conversations are presented below: It happened within the community and the health centre At the health centre, it still happens when they see you with a card or when you go to a special section. At some health facilities, when they see you behave a certain way, they say that s an MSM. Some facilities are friendly but at Comprehensive a judgment down deh so (its hell down there). It s not friendly down dere so. By JASL, its friendly, but at times people who used to work there have a reputation of talking. CHARES is very friendly. It s not true about Comprehensive. I have been there and no problem Experiences differ. If you are from the surrounding community, you will get it when you go home so I try to go to farthest clinic. I am not saying that doctors discriminate but the straight people around there. I was stigmatized at school. I had to identify on the medical that I am positive. The nurse stigmatized me. I thought nurse would not be involved in an act of discrimination. Every nurse should be appropriately trained. Nurses should be better educated. Some of medical personnel use Christian backgrounds to judge. Many were fearful of recriminations from the wider community. For example: In my community, people say I am on high horse. People have it to say I am MSM. If they find out that I am positive now, all hell breaks loose People suspect that I am gay. In St James, they can jump outta (out of) one car and stab you. Sometimes, if you pretty and they like you, they battery you. Sometimes you have stalkers. The respondents also recounted their experiences of discrimination within their families: You see like how them know say I am an MSM, if they know that I am positive, they will scorn me. Now, I sleep on the floor; sometimes I go home and I have nothing to eat. Aunty carry mi name to foreign so I don t get money nor anything. Mother used to have a little sympathy. Father accepts me. He says I have to go to foreign (abroad) to live. I find it hard to break it out that I am HIV positive. Mother is steeped in religion. My father goes behind her back and pinches her money; he defends me and says I am his child. My mom knows. My brother distances me because he is well known so he cut me off. My mother knows. The rest of the family knows I am gay. Dad is not there. Dad kicked me out but my mother is there for me regardless. When I just found out, my sister was there. My mother knows. However, I have never discussed it. Nobody knows in wider community 48

49 Fears of Disclosure These responses reveal the fear of disclosure that exists. All respondents, save one, were visibly nervous: My family can t come to me and say anything. My daughter knows I am positive but she still treats me better than she treats her mother. Another explained that though his family is supportive despite knowing his sexual preference, he had not revealed his status: My family is loving and cohesive. We have a loving relationship but they don t know about the HIV part. Others were fearful to disclose at public events and to their partners. I fear for my lover because I don t feel they reach the level right now to tell him. We do protective sex always. We go so far now it would be ticklish. There would be couple months of silence. If they find out I am HIV positive and I don t tell them would be hard. I am preparing myself to disclose and also preparing him. I have to prepare for when the autoclapse/great plunge comes The head of one organization explained the need to be cautious since HIV adds an added level of stigma to homosexuality. People suspect but I don t disclose at every event. Discrimination among MSMs However, there was consensus that discrimination was common among MSMs. We ourselves discriminate against each other. MSMs put down each other. Sometimes, we stigmatize against each other. It is usually a PLHIV who discloses to other MSMs. There is a big class issue within the community of MSMs. PLHIVs socialize with MSMs but the discrimination you get if worse than from outside. MSMs are easier to chat your business and throw you out. We are just inhumane, wicked. Also has to lot to do with how we dress. Will not walk with someone too flamboyant the ray ray are more ostracized and talked about. Some information is our death sentence Social Distinctions among MSMs Respondents were careful to explain the social distinctions among MSMS. We have gay (decent, works, know what they want), batty man (walk and sell body), homosexual (rich and famous, limelight, break out straight guys into bissexual); (sports (thug, undercover) If they have money, they use this as basis for discrimination. Experiences are different depending on subcategories. Each category behaves a particular way so how they behave affects how they hide and show status. The focus group discussions, as did the case studies, describe the weight of psychological pressure on particular subpopulations and individuals. Furthermore, they do so in a manner that the quantitative study was unable to convey. The survey sought to assess the extent to which PLHIVs believe that they experience psychological pressure. Throughout the training, researchers were able to pilot test the question and, based on feedback, to refine explanations of the terminology. Questions still remain about how well respondents understood the term. Nevertheless, the results show that the majority of men and women do not believe that they have ever been subjected to psychological pressure (74.3% of male respondents and 73.9% of female 49

50 respondents). Again, this finding must be interpreted against the backdrop of low levels of disclosure. In other terms, PLHIV are less likely to experience psychological pressure where they have not disclosed their status. Against this backdrop, too, it is significant that over one quarter of PLHIVs interviewed noted that they have been subject to psychological pressure. It is noteworthy, too, that there is not much disparity in the proportions (although not absolute numbers) of the sample that have been subject to this pressure: 25.7% of males represented and 26.1% of females. Table Psychological Pressure by Sex Have you ever been subject to psychological pressure N=500 Yes No Total Gender Male Count % within 25.7% 74.3% 100.0% Gender Female Count % within 26.1% 73.9% 100.0% Gender Transgender Count % within 33.3% 66.7% 100.0% Gender Total Count % within Gender 26.0% 74.0% 100.0% Across age groups, there were also fairly unremarkable disparities in the proportions of respondents (as opposed to absolute numbers) who experienced psychological pressure: 26.5% of PLHIVs aged over 50 years; 24.1% aged between 40 and 49 years; 25.7% of PLHIVs between 30 and 39 years; 28.3% aged and 31% aged years. Only 16.7% (1 of the 6) respondents stated that they had experienced psychological pressure. Not unexpectedly (since 55% of the PLHIVs surveyed reside in small towns and villages), a slightly higher proportion of respondents from small towns and villages (28.5%) had experienced psychological pressure; that is, compared with 21% of rural area residents and 25.4% of persons who reside in urban centres. Proportionately, levels of psychological pressure were highest among persons who have been living with HIV for up to one year (30%), followed by those living with HIV for years (29%). Twenty seven percent of persons living with HIV for 5 to 9 and for 15 years and over noted that they had been subjected to psychological pressure. The disparities are not sufficiently significant to arrive at conclusive statements about the relationship between experiences of psychological pressure and length of time living with HIV. However, the case studies and anecdotal evidence suggest that (a) persons living with HIV for longer periods are likely to be better able to cope with psychological pressure and, accordingly, may not regard certain experiences as such after some time; and (b) persons living with HIV for longer periods may be less subject to psychological pressure, as members of their social circles become more knowledgeable and less fearful of the disease. Only six respondents stated that they had no formal education. Of this, 3 reported being subjected to psychological pressure. The numbers here are too low to draw worthwhile conclusions. It is more significant that 27% of secondary school graduates (83 of 305 respondents); 23.5% of primary school graduates (31 of 132 respondents) and 21% of college or university graduates have felt psychological pressure. Within income groups, 21.4% of the lowest earners; 21% within the middle-income category and 15% of the highest income earners have felt psychological pressure. Across income groups, the lowest level earners comprised 57.5% of PLHIVs (46 of 80 persons) 50

51 who reported being subjected to psychological pressure. Given the balance in the sample, they also comprised 51% of PLHIVs who reported not being subjected to psychological pressure (169 of 331 persons). 4.2 DISCRIMINATION AGAINST HOUSEHOLD MEMBERS Respondents were asked whether in the last 12 months, their wife/husband or partner, or any members of their household have experienced discrimination as a result of their HIV positive status. Sex For a significant proportion of the males and females who responded to this query (82.2% of males and 78.3% of females), their household members have never suffered discrimination because of their status. Twelve percent (12%) of the men who responded noted that their household members had suffered discrimination at least once while 2% were unsure. Eighteen percent (18%) of the women who responded noted that their household members had suffered discrimination at least once, while 3% were unsure. These proportions are not insignificant, particularly in contexts where the rates of disclosure are as low as the data indicates. Age Fairly equal proportions of persons aged (that is, 76.7% of PLHIVs within this age group), (76.1% of PLHIVs within this age group) and 50 years and over (76.1% of PLHIVs within this age group) reported that their household members had never suffered discrimination on account of their HIV status. Eighty six percent (86%) of PLHIVs aged 40 to 49 years and 79% of respondents aged years stated that their household members had never suffered discrimination. The majority of persons who reported that their household members experienced discrimination and did so often were within the age group. Length of Time Living with HIV Ninety two percent (92%) of persons who have been living with HIV for 15 years and over noted that their household members have never suffered discrimination. A lower proportion: 73.5% of persons living with HIV for years and 77.6% of those living with HIV for 5-9 years reported that their households had never suffered discrimination. Persons living with HIV for 5-9 years reported the most cases of discrimination against household members. However, since this category of PLHIVs comprised 41% of the sample, the findings must be qualified to account for this. Summary The findings in this section suggest the following: 1. It is erroneous to assume that discrimination is directed to PLHIVs, solely by persons living without HIV. Such a stance will miss important dimensions of intra-group dynamics and the weight that these may have on the wellbeing of differing groups of PLHIVs. An anthropological approach to policy-making and programming is necessary, specifically an approach that probes issues of identity, power relations and the consequences for varying subgroups. 2. Levels of discrimination against households are likely to be affected by or dependent on disclosure. It would be prudent to assume that discrimination would increase if persons status were known. Further qualitative research is required to probe how households, where persons are known to be living with HIV, experience discrimination. SECTION 5: HIV, EMPLOYMENT, EDUCATION AND HEALTH Eighty eight percent (88%) of males and 86% of females have never had to change residence or been unable to rent accommodation. Twelve percent (12%) of males and 51

52 13.4% of females have lost accommodation at least once. As noted throughout the report, it is important to contextualize these findings for these, perhaps unexpected, low levels of loss of residence and inability to rent accommodations may reflect lack of knowledge of the respondents status. Therefore, as the majority of PLHIVs in the sample have not disclosed their status, it is difficult to weigh the resulting levels of stigma and discrimination. Table Forced to Change Place of Residence by Sex In the last 12 months, have you been forced to change your place of residence or been unable to rent accommodation? N=503 Never Once A few times Often N/A Total Male (9%) (100%) (88.3%) (2.1%) (.5%) Female 268 (85.9%) 25 (8%) 5 12 (3.8%) 2 (.6%) 312 (100%) (1.6%) Trans-gender 3 (100%) Total 437 (86.9%) 42 (8.3%) 9 (1.8%) 13 (2.6%) 2 (.4%) 503 (100%) Forty five percent (45%) of the males who reported that they lost accommodations at least once thought that this had occurred because of their HIV status; 23% thought there was another reason; 18% thought that this happened both because of HIV and another reason and 14% were unsure of the reason. Only one PLHIV within the age group had lost or been unable to rent accommodation. Eighty three percent (83%) of PLHIVs aged have never lost accommodations while 14.3% have lost accommodations at least once. Eighty seven percent (87%) of PLHIVs aged years have never lost accommodations; however, 13% have lost accommodations at least once. Among year olds, 86.2% have never lost accommodations while 13.8% have lost accommodations at least once. The corresponding figures are 89% of year olds not having lost accommodations and 10% who have. Among 50 year olds, 87% have never lost accommodations while 13% have lost accommodations at least once. Eighty seven percent (87%) of persons living with HIV for up to 1 year have never lost accommodations; 8.3% lost accommodations once and 4.2% have lost accommodations a few times or often. Of persons living with HIV for between 1 and 4 years, 87.6% have never lost accommodations while 12% have at least once. Eight percent (8%) of persons living with HIV for between 5 and 9 years have never lost accommodations; 11.9% have done so at least once. The highest proportion of persons who reported that they have lost accommodations has been living with HIV for between 10 and 14 years. Eleven percent (11%) of PLHIVs over 50 years lost accommodations at least once. Of the 6 PLHIVs who reported that they had not had formal education, three had lost accommodation once. A significant 91.7% of PLHIVs who had completed primary education have not lost accommodations while 15.5% of secondary school graduates have lost accommodations at least once. The majority of cases of reported lost accommodations or difficulty with acquiring them came from small towns and villages followed by rural areas. While 89% of urban area residents have never lost accommodations, 86.3% of PLHIVs within small towns and 88% within rural areas have never lost accommodations. Table Forced to change place of residence by location n=497 In the last 12 months, have you been forced to change your place of residence or been unable to rent accommodation? 52

53 Is your household in any of these locations? A few Total Never Once times Often A rural area A small town or village A large town or city 88.3% 9.1% 1.3% 1.3% 100.0% % 8% 1.8% 3.2% 100.0% % 5.9% 1.5% 2.9% 100.0% Total Among the year old respondents, 17 of the 24 PLHIVs (71%) who lost accommodations identified knowledge of their HIV status as the cause, while 2 PLHIVs attributed it to both HIV and another reason. Four persons were unsure and 2 thought there was another reason. Among year olds, 11 of 15 respondents (69%) believed they lost accommodations because of their HIV status. Within small towns, 22 of the 36 PLHIVs (61%) who lost accommodations note that their HIV status was the cause. Lost Job/Income Loss of jobs and income are slightly higher among women; that is, compared with their loss of accommodations. Specifically, while 13.4% of the women and 11.6% of the men interviewed stated that they had lost accommodations at least once, 15% of women and 10.6% of males had lost their jobs/income. (See discussion on the reasons for loss of accommodation and income below) Seventy one percent (71%) of PLHIVs who live in rural areas had never lost their jobs while 14% had lost their jobs at least once. Sixty five percent (65%) of residents of small towns and villages had never lost their jobs while 13.3% had lost their jobs at least once. Sixty one percent (61%) of PLHIVs who lived in large towns had never lost their jobs while 15.7% had lost their jobs at least once. The table below demonstrates that while a fair percentage have never lost their jobs/income, this problem does affect all age groups and is more significant than loss of accommodations. Defining the cause for loss of income is difficult, given the economic climate. However, some respondents (see textbox below) suggest that PLHIVs are particularly at risk within the current economy, not only because of discrimination but because poor health makes them less able to compete for and maintain jobs. Table 5.1.3: Loss of Job/Income by Age Group n=380 In the last 12 months, have you lost a job or another source of income? How old are you Never Once A few times Often Total 16-19yrs %.0% 50%.0% 100.0% 53

54 20-24yrs % 9.5% 9.5%.0% 100.0% 25-29yrs % 8.3% 8.3% 2.7% 100.0% 30-39yrs % 7.4% 7.4%.74% 100.0% 40-49yrs % 13.3% 4.16%.83% 100.0% 50yrs and over % 9.2% 3.1% 1.5% 100.0% Total % 9.73% 6.3% 1.05% 100.0% Thirty eight percent (38%) of PLHIV s (aged years) who lost their jobs believed that this had occurred because of their status; another 38% attributed it to another reason. Fifty percent (50%) of PLHIVs aged who lost their jobs believed that this had occurred because of their status. Textbox 5.1.1: Excerpts from Focus Group Discussion: HIV, Discrimination and Poverty If they know you have HIV, you are less likely to get work. It s mostly their good friends who get work. Most persons among us do not have enough to eat. Sometimes, days go by and there is not enough to eat. Even if they don t know your status, sometimes there are visible illness and they tell us there is no work. In my district, they tell me that I can t talk because I have a death sentence. Some people with HIV can work and are not helping themselves; some are lazy. I can do little work but because someone else is stronger, they give the job to him. I sit and bawl nuff times. Since we got sick, we work less. From I got sick, the lady I worked with for two years gave me $1000 to go to the doctor. Afterwards, everytime I go back, the people say she isn t there. In one community, a focus group was held among, principally, elderly PLHIVs to explore the relationship between HIV and poverty. Excerpts from that discussion are presented in the textbox above. The table below shows discrepancies between the numbers of persons who initially noted that they lost their jobs either wholly or partly because of their HIV status and those who subsequently specified reasons. One likely explanation is that some of the persons who first stated that they were unsure of the reason for their dismissal later had a firm opinion after reflecting on the suggestions. Interviewers may also have recorded multiple rather than a single responses. Tables Reasons for Loss of Income n=16 If because of HIV status wholly/partly, did you lose your work or income Wholly/ Partly HIV status Because of discrimi-nation by your employer or coworkers Because you felt obliged to stop working due to poor health Because of a combination of discrimination and poor health Because of another reason 54

55 Sex Male 8 (4.8%) Female 20 (6.8%) Transgender % 25% 18.7% 31.3% % 17.6% 17.6% 32.3% Total 15 30% 10 20% 9 18% 16 32% Although sixteen (16) respondents indicated that there are other reasons (apart from discrimination and poor health) for their loss of income, some of these other reasons fall squarely within the categories of discrimination and poor health. Again, this raises questions about whether and how respondents understood the questions and whether and how they understand the many facets, including social dynamics surrounding HIV. Other reasons for Loss of Income: Business was slow Didn't have transportation fees all the times to attend work Got sick Harassment from police Because of the stroke in my hand Person who I use to look after died Rashes on skin Sabotage They ask for a test to be done; I give them wrong answer she don t believe me and tell me to leave Unemployed: I am afraid to seek employment because of my status 5.2 HIV, DISCRIMINATION AND EDUCATION How prevalent is discrimination across and within educational institutions? Two questions were asked in the study: 1. In the last 12 months, have you been dismissed, suspended or prevented from attending an educational institution because of your HIV status? 2. In the last 12 months, have your children been dismissed, suspended or prevented from attending an educational institution because of your HIV status? Fifty eight percent (58%) of males who responded and 61% of females had never been dismissed, suspended or prevented from attending an educational institution. Thirty five percent (35%) of males and thirty four percent (34%) of females considered the query inapplicable. Others were not sure of the reason for dismissal or suspension. It is difficult to define the precise reasons why persons considered the query inapplicable, though it is likely that respondents considered the question to be pertinent only to PLHIVs enrolled in an educational institution. Only 2 males, 1 female and 1 transgender believed they had been prevented from attending an education institution. As noted above, these findings do not necessarily depict the prevalence of HIV related discrimination within educational institutions since they are likely to reflect situations where persons HIV status is unknown. 55

56 Table Dismissed, Suspended or Prevented From Attending an Educational Institution by Sex In the last 12 months, have you been dismissed, suspended or prevented from attending an educational institution because of your HIV status? Never Once A few times Not sure N/A Total Sex Male % 1.2%.0% 6.4% 34.7% 100.0% Female %.0%.3% 5.0% 33.9% 100.0% Transgender % 33.3%.0%.0% 33.3% 100.0% Total %.6%.2% 5.5% 34.2% 100.0% Three of these four respondents were between 30 and 39 years and 1 between 20 and 24. Three lived in a rural area and one in a large town. There were slightly more reports of children being dismissed or prevented from attending an educational institutional: 5 children as opposed to 4 adults above. 5.3 HIV, DISCRIMINATION AND HEALTH Compared with education, the PLHIVs in the sample expressed more concerns about the health sector. As disclosure is more likely within the health sector, higher levels of discrimination may not be unexpected; however, it is also possible to argue that levels of discrimination should be low given the trainings on HIV provided and the principles that health care workers are expected to observe. The survey analyzed a number of pertinent issues. For example, respondents were asked why they were tested for HIV. a. Testing Thirty nine percent (39%) of males and sixty one (61%) percent of females confirmed that they had taken the decision themselves. However, 15% of the women who responded had been tested without their knowledge; another 15% was made to take the test and 6% had been pressured to do so. Fourteen percent (14%) of males had been tested without their knowledge; 9% had been made to take an HIV test; and 5% had been tested under pressure. Table Was the Decision to be Tested up to You by Sex n=501 Was the decision to be Yes, I took the decision myself to be tested Gender Male Female Transgender Total % 60.7%.5% 100.0%

57 tested for HIV up to you I took the decision to be tested but it was under pressure I was made to take an HIV test I was tested without my knowledge and I only 38.1% 61.9%.0% 100.0% % 70.8%.0% 100.0% % 61.8% 1.8% 100.0% found out after Total % 61.9%.6% 100.0% It is worth noting that the majority of respondents who had been tested wholly or partly involuntarily were based in small towns and villages. Table Was the Decision to be Tested up to You by Location n=497 Was the decision to be tested for HIV up to you? Yes, I took the decision myself to be tested I took the decision to be tested but it was under pressure I was made to take an HIV test I was tested without my knowledge and I only found out after Is your household in any of these locations? A small town or A rural area village A large town or city Total % 52.0% 14.1% 100.0% % 57.1% 19.0% 100.0% % 63.0% 13.0% 100.0% % 69.1% 10.9% 100.0% Total % 55.1% 13.9% 100.0% b. Denied Health Services Ninety three percent (93%) of the men who responded and 95% of women had never been denied health, including dental care, services because of their HIV status. Only 7 of the 188 men who responded noted that they had been denied health services at least once; 1 was unsure. Eight of the 308 women who responded had been denied health services at least once. c. Reproductive Health Seventy two percent (72%) of the men who responded to this query confirmed that they had children. In comparison, 91% of the women had children. Ten percent (10%) of males and 19% of women noted that they had children who were HIV positive. Counselling About Reproductive Options Of the PLHIVs who considered this query relevant, thirty six percent (36%) of males and 48% of women had received counselling about their reproductive options. Of this subsample, 17% of males and 34% of females stated that a healthcare worker had advised them not to have a child since being diagnosed positive. Conditions for Obtaining Antiretroviral Treatment Seventeen percent (17%) of the men who responded and 15% of the women stated that their ability to obtain antiretroviral treatment was made conditional on whether they used certain forms of contraception. 57

58 Coercion into Terminating Pregnancies and Method of Giving Birth Close to 2% of males in the sample (3 persons) and 12.3% of females (38 persons) stated that they had been coerced into being sterilized after being diagnosed. Approximately one percent (1.4%) of PLHIVs (7 persons) stated that they had been coerced by a healthcare professional to terminate their pregnancies; 8.5% of women believed that they had been coerced by a health care professional in relation the method of giving birth because of their HIV status. Coercion into Infant Feeding Practices Of the 120 women who responded to this query, 57.5% (69 women) claimed that they had not been coerced into infant feeding practices because of their HIV status;42.5% (51 persons primarily between 30 and 39 years, following by PLHIVs aged years) felt they had been. Forced to Submit to Medical Procedure because of HIV Status Four percent (4%) of males (7 persons) and 3.3% of females (10 persons) said that they had been forced to submit to a medical procedure because of their HIV status. Given ARTs to Prevent Mother to Child Transmission of HIV Fifty four percent (54%) of the 138 women (75 women) who responded had been given ARTs to prevent mother to child transmission of HIV during pregnancy. Fourteen percent (14%) claimed that they did not know such treatment existed while 28% (39 persons) were not HIV positive when pregnant. Fifty six (56) percent of the women (78 persons) stated that they were also given information about healthy pregnancy and motherhood. (Here there is discrepancy in the numbers, since it would have been expected that the number of respondents would have been less than and up to 75. It is likely that this is the product of interviewer error.) d. Disclosed Status The survey asked whether a healthcare professional had ever disclosed status without consent. In the majority of cases of 190 males (54.2%) and 152 of 308 females (49%)---this did not happen. However, 7% of the males and 11% of the females who responded confirmed that this type of disclosure did in fact occur. Thirty eight percent (38%) of males were unsure as were 39% of females. Table Disclosure of Status by Health Professional by Sex and Location Has a health care professional ever told other people about your HIV status without your consent Yes No Not sure Total Gender Male % 54.2% 38.4% 100.0% Female % 49.4% 39.3% 100.0% Transgender % 66.7% 33.3% 100.0% Total % 51.3% 38.9% 100.0% Has a health care professional ever told other people about your HIV status without your consent Yes No Not sure Total A rural area

59 Is your household in any of these location A small town or village A large town or city 10.4% 61.7% 27.9% 100.0% % 47.3% 44.0% 100.0% % 45.6% 42.6% 100.0% Total % 51.5% 38.8% 100.0% Fifty percent (50%) of the PLHIVs who confirmed that their status had been disclosed resided in small towns and villages. e. Confidentiality of Findings Among the more glaring findings was the patent lack of trust in the confidentiality of records. Only 35.2% of the males who responded to this query and 29% of females felt that their records were kept confidential. Fifty percent (50%) of males were unsure and 17% were convinced that their records were not being kept confidential. Fifty five (55%) percent of females were unsure and 17% believed that there had been breaches in confidentiality. Forty one percent (41%) of PLHIVs who were unsure that their records are being kept confidential are between 30 and 39 years. Sixty four percent of PLHIVs who believed that their records had not been kept confidential were between 30 and 49 years; sixty percent (60%) of these PLHIVs lived in small towns and villages. Summary: The findings from this section reveal the following: 1. Perceptions and experiences of stigma and discrimination appear low in areas such as access to jobs and accommodation. There were also few reports of discrimination within the education sector. 2. Reports of discrimination were more prevalent within the health sector. 3. The findings, including from the case reports and focus group discussions, indicate the need for effective legislations, systems and mechanisms that will protect the rights of and improve accountability to PLHIVs. SECTION 6: INTERNALIZED STIGMA The analysis of internalized stigma was an important aspect of the study since how people perceive themselves affects how they interpret others actions and how they then negotiate 59

60 their contexts. It would be useful to conduct further analyses of the extent to which internalized stigma affects perceptions of exclusion. The current findings indicate the following. 1. A greater proportion of women than men claimed that they had low self-esteem because of their HIV status; that is, 39.5% of women and 27.7% of men. 2. PLHIVs who were between 40 and 49 years were the most affected by low selfesteem. 3. The greatest proportions of PLHIVs who claimed to be affected by low self-esteem lived in small towns or villages. 4. The greatest proportions of PLHIVs who claimed to be affected by low self-esteem had been living with HIV for 5-9 years. Respondents were also asked whether they felt suicidal. Thirteen percent (13%) of the males claimed that they felt suicidal, compared with 24% of females. Proportionately, the majority of persons who stated that they felt suicidal were between 20 and 24 years followed by 25 to 29 years. With a larger sample, it may have been possible to evaluate the extent to which such sentiments exist among PLHIVs who are between 16 and 19 years. With respect to absolute numbers, PLHIVs aged years recorded the greatest count of persons who felt suicidal. Interestingly, one half of persons who stated that they had no formal education had suicidal thoughts, compared with 20% of primary and 19% of secondary level graduates. The differences in experiences of suicidal thoughts across urban and non-urban areas were not substantial. The study explored other internalized sentiments, including self-blame, blaming others and guilt, desire for punishment. When the numbers of PLHIVs who experienced at least one of these feelings are combined, the results indicate that approximately 82% of the 190 males who responded, 79% (249 of 315) of females and all 3 transgenders have experienced internal stigma. This is a significant issue. It is the dimension of the study that appeared to evoke the most responses: 508 of the 509 surveyed expressed clear opinions. Table shows the behaviours that are not done because of HIV status. The most significant is the decision not to have children, followed by the decisions not to get married and to have sex. Table Behaviours Not Done Because of HIV Status Male Female Yes No Total Yes No Total Withdrew from education training 7 (4.8%) 138 (95.2%) 145 (100%) 14 (5.6%) 234 (94.4%) 248 (100%) Not married 36 (20%) 144 (80%) 86 (29.2% 209 (70.8%) 295 (100%) Decided not to have sex 46 (24.7%) 140 (75.3%) 186 (100%) 115 (62.5%) 192 (62.5%) 307 (100%) Decided not to have children 99 (54.4%) 83 (45.6%) 182 (100%) 193 (65.4%) 102 (34.6%) 295 (100%) Avoided local clinic 13 (6.9%) 175 (93.1%) 188 (100%) 37 (11.9%) 275 (88.1%) 312 (100%) Avoided hospital 8 (4.2%) 181 (95.8%) 189 (100%) 24 (7.8%) 285 (92.2%) 309 (100%) Stop preparing meals for family 20 (11.2%) 159 (88.8%) 179 (100%) 24 (7.7%) 287 (92.3%) 311 (100%) Stop interacting 6 (3.6%) 162 (96.4%) 168 (100%) 11 (3.5%) 291 (96.4%) 302 (100%) 60

61 Here it is important to note that the focus group among youth suggested that are risky sexual behaviours among people living with and without HIV, despite knowledge of status. The quotes below are worth contemplation. People know mi (I) have AIDS but them (they) still a beg some (are still beginning for sex): Anything you have baby, mi want ketch it to! (I want to catch it too) (Young girl, Focus Group among Youth) One young man explained that he contracted HIV after a dual sexual encounter. His emphasized that his approach to sexual relations is representative of the stance among many young men whether or not they are living with HIV. This young man explained that half of the men in Jamaica do not like to have sex while using condoms, so dem teck off dem socks. In his case, he verbalized his perspective pre (and to some extent) post diagnosis: Mi would a like fi beat deh beef yah right now bareback---mi no even want put on no socks! (I would like to have sex with this girl---bareback---i don t even want to wear a condom) (Young man, Focus Group among Youth) Summary This section raised the critical question of internalized stigma. The findings suggest that substantial support is required to address the psychological needs of PLHIVs. Correspondingly, the focus group among YPLHIVs demonstrated the benefits of a functioning support structure and process: The Red Cross helps to build knowledge. It teaches me to rise above depression. Before that, I felt like taking my life.. Focus Group with Young People Living with HIV, November 16, 2011 The survey process revealed that support structures do not always function as intended. The focus groups and case studies, particularly, showed gaps in service provision, particularly from commissioned social workers. Further study is required to identify attitudes to HIV among counsellors and related staff. The section also highlights the following: 1. Knowledge of status does not necessary result in internalized stigma and withdrawal. The focus group among YPLHIVs confirmed that risky sexual practices can continue, unabated, despite knowledge of status. One challenge to addressing risky sexual practices is that fear of the disease seems to have abated somewhat, particularly among the young: I used to believe that since I have it, I will die. Nowadays, society is changing a lot. Persons are now seeing that you can live long with HIV. 61

62 Additionally, HIV is no longer seen as necessarily damaging the body and looks, young people report that some among them, currently living without HIV, are not only willing to get it but also to spread it: My baby father say I can t have it and look so. Him say him will put tings in his blood to prevent it but that if him get it, him a go spread it (He says he will put things in his blood to prevent it but if he gets it, he will spread it). Focus Group with Young People Living with HIV, November 16, It is noteworthy that greater proportions of women than men reported being affected by low self-esteem. This supports the view that discrimination may be more directed to women and that women s experiences differ from men s. Again, this finding reinforces the need for a gender-disaggregated approach to programming. 62

63 SECTION 7: KNOWLEDGE OF RIGHTS, LAWS AND POLICIES The survey assessed respondents knowledge of their rights as PLHIVs, as well as about existing laws and policies. The tables below display dramatic findings. Declaration of Commitment on HIV 1. Thirty nine percent (39%) of the men who responded and 44% of women said they were aware of the Declaration of Commitment on HIV/AIDS; 61% of males and 56% of females were not aware. (Knowledge levels were higher among women than men). 2. The least knowledgeable age groups were the youngest and oldest respondents: 83% of year olds did know of the Declaration (although this sample is much too small for dependable assessments); 63% and 62% of and year olds, respectively, did not know; 63.5% of PLHIVs aged 50 years and over were unaware. Sixty one percent (61%) of year olds and 50% of year olds did not know of the Declaration. 3. The highest proportion of PLHIVs who were unaware of the Declaration had up to primary level education. The highest proportions also lived in the rural areas. Table Knowledge of the Declaration of Commitment on HIV/AIDS by Education Levels and Location N=504 Education Level Declaration of Commitment on HIV/AIDS, which protects the rights of PLHIV Yes No Not sure Total What is the highest level of formal education you have completed No formal education % 66.7%.0% 100.0% Primary school % 68.2%.0% 100.0% Secondary school % 55.7%.3% 100.0% College/University % 49.2%.0% 100.0% Total % 58.3%.2% 100.0% Location Is your household in any of these location N=500 Declaration of Commitment on HIV/AIDS, which protects the rights of PLHIV Yes No Not sure Total A rural area % 65.6%.6% 100.0% A small town or village A large town or city % 57.0%.0% 100.0% % 46.4%.0% 100.0% Total % 58.2%.2% 100.0% 63

64 B. Knowledge of the National HIV Policy Comparatively, there was a higher level of knowledge of the National HIV Policy, although there still were significant gaps. Fifty two percent (52%) of females and 47% of men knew of the National HIV Policy; 53% of men and 48% of women did not. Levels of knowledge were highest among PLHIVs aged years and among those living with HIV for 15 years and over. Proportionately, the college and university graduates within the sample were the most knowledgeable of the National HIV Policy and persons without formal education were the least. Of the sample, PLHIVs who live in small towns and villages were the least knowledgeable of the National HIV Policy; however, this may reflect the bias in the sample. Table Knowledge of National HIV Policy, which protects the rights of PLHIV by Education and Location n=501 What is the highest level of formal education you have completed Yes No Not sure/dk Total No formal education % 66.7%.0% 100.0% Primary school % 61.1%.0% 100.0% Secondary school % 46.1%.3% 100.0% College/University % 43.1%.0% 100.0% Total % 49.9%.2% 100.0% n=497 Is your household in any of these location Yes No Not sure/dk Total A rural area A small town or village 51.0% 48.4%.7% 100.0% % 50.7%.0% 100.0% A large town or city % 48.5%.0% 100.0% Total % 49.7%.2% 100.0% 64

65 7.2 Knowledge of Organizations or Groups for Help Sixty three percent (63%) of the males who responded to the survey claimed that they did not know of organizations and groups that provide support in the event of stigma and discrimination; 37.2% were aware. Fifty nine percent (59%) of the females knew of supporting organizations while 41.4% did not. Across age groups, the highest proportions (though not absolute numbers) of PLHIVs who claimed not to know of organizations that provide support were aged 50 years and over. Eighty nine percent (89%) of persons who have been living with HIV for up to one year did not know of supporting organizations while people who have been living with HIV for between 10 and 14 years were the most knowledgeable (53.7% knew of these organizations). When the data is disaggregated to reflect education levels, the most knowledgeable group comprised college and university graduates while 74% of primary school graduates claimed not to know of such groups. This figure was even higher than that for persons without formal education. PLHIVs who live within large towns and cities recorded the highest level of awareness of these organizations (that is, where this is assessed in terms of percentage of households who live in the urban areas rather than absolute numbers across the sample). The survey asked respondents to define the organizations they know of. Only 11 men and 27 women knew of the Network of People Living with HIV. Thirty-three (33) of these were in the and age groups. Similarly, the majority of persons who knew of the Network have been living with HIV for between 5 and 14 years. Persons without any formal education claimed not to know of the Network while the proportion of secondary school graduates who responded to the query was the most knowledgeable. The sample of rural area residents was the least knowledgeable. Merely 19 PLHIVs (5 men and 14 women) expressed awareness of local NGOs while 10 women, 8 men and 1 transgender stated that they knew of supporting faith-based organizations. Of the entire sample, 5 women claimed to know about legal practice. Of these 2 were between 30 and 39 years; 2 between 40 and 49 years and 1 was 50 years and over. Twenty (20) PLHIVs were aware of human rights organizations; of these 9 men and 16 women. Fifteen of the respondents were between 30 and 39 years and 6 between 40 and 49 years. There was slightly more familiarity with national NGOs: 19 males and 34 females were aware. Thirty-seven PLHIVs knew of the National AIDS committee (13 males and 24 females) while 10 knew of international NGOs and 29 of the UN organization. The survey enquired whether respondents knew of other organizations; 23 PLHIVs (14 females and 9 males) stated that they were aware of others. Respondents listed CHARES, clinics, health centres, HIV helpline, social workers, police, nurse, treatment site and Type 5. It is, therefore, safe to conclude that knowledge of supporting organizations is very low among the PLHIVs represented in the study. Seeking Help Twenty-nine PLHIVs (7 females and 22 males) had sought help from a supporting organization to resolve an issue relating to stigma and discrimination. The majority of these (19) were between 30 and 49 years and were secondary school graduates. Thirteen (13) PLHIVs were from the rural areas and 16 from small towns and urban centres. 65

66 List of issues Males Acted on behalf of another PLHIVs that was discriminated at the hospital He tried to resolve the issue at the clinic at the school on his own His aunt put out his things outside of the house and bring gunman to kill him His right has been violated and his status disclosed without his consent in the public by a doctor HIV I am not supposed to have sex because I am HIV positive I have solved it my self It was about the texture of his skin, saying that you skin look a way, he told the person to go and check their status Medications were placed in a bag upon distribution Partner being infected Rumours Status was revealed to child's mother Suspicion of status and sexual orientation Females Being HIV positive A friend of mine who was aware of my status went and disclose my status to others without consent A lady in my community walked and told everybody Being stared at and criticized about my status Community member putting her down repeatedly reminding her of her status Days were cut at work from five to three days Disclosure of my HIV status Discriminated by persons on the Stigma Index Workshop Ex- boyfriend let my status known to the community and accused me of giving him HIV Family member stigmatizing Gossip about my HIV status Her husband s friends were talking about her being HIV positive, so her husband showed them his HIV negative test report to let them know he was not the one who infected his wife I am teased about my HIV status and my babies who died I came just for support from them JN+ I got sick and everyone thought I was going to die I was discriminated by my friend because my children s father died from AIDS In the community I live my child is been discriminated against every day It was about disclosure Job lost My brother was discriminating against me My children were stigmatised at school My friend didn't want to eat from me when I informed him of my status My HIV status My home has been stoned on a constant basic and I have been verbally abuse My peers discriminate me in the community My spouse curse me about my HIV status My supervisor was going around gossiping No taxi wants to carry me. People don t want to talk to me Nurse and patient disclosing my status to community members People accused me of giving my baby father Aids because he died People in community were assuming my HIV status People spreading news that she was HIV positive, and one person to tell her was someone who work in the health sector Pharmacists want me to disclose in front of other patients and she was behaving in a most embarrassing way People spreading news that she was HIV positive, and one person to tell her was someone who work in the health sector Stoning of my house That I am passing on HIV to other community members Was been discriminated from nurses at the university hospital Was refused surgery because of HIV status When I was tested positive and my partner was not positive the social worker told him that he should leave me 66

67 The issues of stigma and discrimination for which respondents sought support are listed in the table above. It is important to underscore that the females in the sample identified considerably more cases of stigma and discrimination than did the males. This is consistent with earlier findings, which suggested that more females than males appear to be victims of harassment. In addition, the issues noted corroborate the view that family and community members are among the primary sources of discrimination. Yet, for many PLHIVs, it was other family and community members who also helped to deal with the issues. Thus, when they were asked who helped to resolve the issues, respondents indicated friends, community residents, family members, doctors and social workers, JASL and JN+. Prime among their recommendations, PLHIVs expressed need for education, awareness and advocacy for their rights. There was slightly less focus on providing support (perhaps it was believed that systems already existed). The Stigma Index revealed that there are significant deficiencies in these areas both among PLHIVs and in the wider society. Effort must be made to improve education, awareness and advocacy, though with special attention to the particular needs of varying subpopulations, including differing age groups. 67

68 SECTION 8: EFFECTING CHANGE AND PLHIVs RECOMMENDATIONS CONFRONTING STIGMA AND DISCRIMINATION There is a marked sense of powerlessness among the PLHIVs represented in the sample. When asked whether they had confronted or challenged someone who was discriminating against them, 80.7% of males (151 of 187 respondents) said no; 73% of females (225 of 310 respondents) said they had not. Across age groups, 80.1% of respondents aged had not presented a challenged; neither did 70.2% of PLHIVs aged 30-39; 85.4% of PLHIVs aged 59 years and over; 66.7% of respondents aged years and 71% of PLHIVs aged Persons living with HIV for 0-1 years had the lowest record (85% had not confronted discrimination) of presenting challenges where they perceived or experienced discrimination. This was followed by PLHIVs for 1-4 years (81.6%) and 5-9 years (72.9%). The proportions reduced at years. Here, 35% of respondents noted that they had confronted discrimination. Seventy percent (70%) of persons living with HIV for 15 years and over had not confronted discrimination. Across educational levels, the least challenges were presented by persons who had no formal or primary level education. The same lack of power is displayed in peoples perceptions of their capacity to influence decisions, although here results varied depending on the level of decisionmaking. POWER TO INFLUENCE DECISIONS Power to influence national policies Only 22 men (12.6% of the male respondents) and 27 females (9% of the women who responded) believed that they have the power to influence national policies affecting PLHIVs. Eighteen of these 49 respondents were between 30 and 39 years while 15 were between 40 and 49 years; 9 are 50 years and over and 5 between 25 and 29. Twenty (20) of those who thought they had the power to influence national policies were in the highest income category and 14 in the lowest. Seven of these respondents were middle-income earners. Following previously noted patterns, too, the PLHIVs who considered themselves able to influence policies are, primarily, those who have been living with HIV for between 5 and 9 years (22 of the 49 respondents and, secondly, those living with HIV for years. Further, 31 of the 49 respondents have secondary level education. Nevertheless, it is worth reinforcing that less than 10% of the sample population felt that they could help to shape national policies. This is significant. Power to influence national programmes There was a slight increase in the number of PLHIVs who considered themselves capable of influencing national programmes. Of the 175 males who responded to this query, 19% (33 men) felt that they have an influencing role in national programmes. Of the 300 females who responded, 17% (51 women) confirmed that they could influence national programes; 83% (249) felt incapable. The spread of respondents were, with only few exceptions, fairly similar to that outlined above: 1. Thirty six (36) percent (30 of the 84 respondents) of PLHIVS who believed they could influence national programmes were within the age category; 32% between 40 and 49 years and 15% were 50 years and over. 2. A higher proportion (47.3%) of the lowest as opposed to the highest income (37.8%) and middle-income (14.9%) categories felt able to influence national programmes. Note that PLHIVs within the highest income category felt more capable of influencing national policies rather than programmes. 68

69 3. Fifty (50) of the 84 PLHIVs who felt able to influence national programmes were educated up to secondary level. Equal numbers of college/university level and primary school graduates (17) noted that could influence national programmes. Thirty-eight of these 84 respondents live in small towns or villages; 26 in rural areas and 19 in large town or cities. Power to influence decisions in international agreements Only 42 PLHIVs felt able to influence international agreements; of these, 20 are males and 22 females. The majority of these respondents (17) are within the age groups 30 and 39 years and 40 and 49 years (9). More of the highest (15 of 40) income versus lowest (12 of 40) and middle-income (8 of 40) groups felt able to influence international agreements. Of the 40 respondents, 28 have achieved secondary level education. PLHIV RECOMMENDATIONS FOR ADDRESSING STIGMA AND DISCRIMINATION In response to the request for recommendations for addressing stigma and discrimination, PLHIVs emphasized the need for education, awareness and advocacy for their rights. There was slightly less focus on providing support (perhaps it was believed that systems already existed). The importance of awareness raising and solid education is clear from the findings. The study adds an important caveat: Disempowerment is one predictable outcome of the lack of education and awareness; of the palpable fears of disclosure; and of internalized stigma compounded by stigma among PLHIVs. Further, disempowerment appears to affect particular segments more than others, such as young persons, persons recently diagnosed, the less educated and lowest income groups. This ought to help with targeting interventions. Importantly, policies and programmes should take account of the behaviours, attitudes and cultures among groups of PLHIVs, which is necessary for designing strategies for empowerment 69

70 HEALTH STATUS NOTES 70

71 Health Status Notes In general, how would you describe your health at the moment? Excellent Very good Good Fair Poor Not sure Total Male % 23.2% 24.2% 10.0% 8.9%.0% 100.0% Female % 27.6% 22.4% 7.7% 9.0%.3% 100.0% Transgender % 33.3%.0%.0%.0%.0% 100.0% Health Status Notes Are you taking antiretroviral treatment? Of the males who responded to this query, 88.3% (166) are taking antiretroviral treatment and 11.7% (22) are not. Of the females who responded to this query, 82.6% (257) are taking antiretroviral treatment and 17.4% (54) are not. Therefore, a greater proportion of males than females in the sample are taking ARTs. All transgender were taking ART. Across Health the age Status groups, Notes 33% (2) of Are year you olds taking take ARTs antiretroviral and treatment? What is the 66.7% highest (4) do level not; of 62% education of you have completed? year olds take ARTs and 38% (13); 66% Level (31) of education year olds take Yes No ARTs No and formal 34% do education not. Thereafter, 5 (83.3%); 1 (16.7%) the Primary proportion of persons who take 116 (89.2%); 14 (10.8%) ARTs Secondary increase dramatically: 89.5% 259 (84.1%); 49 (15.9%) (154) of year olds take ARTs College/University 46 (79.3%); 12(20.7%) and 10.5% (18) do not; 87.8% (129) of year olds take ARTs and College 12.2% (18) and do university not; 92.8% graduates had the lowest (90) record of PLHIVs of who taking are 50 years ARTs. and over take ARTs and 7.2% do not. Health Status Notes Are you taking antiretroviral treatment? How long have you been living with HIV? Years living with HIV Yes No (69.6%); 14 (30.4%) (80.1%); 27 (19.9%) (89.2%); 22(10.8%) (92.9%); 5(7.1%) 15 years and over 31 (81.6%); 7(18.4%) Persons living with HIV for up to 1 year had the lowest record of taking ARTs. Health Status Notes Are you currently taking antiretroviral treatment? Yes No Total 71

72 Is your household in any of these locations? A rural area % 13.5% 100.0% A small town or village 85.0% 15.0% 100.0% A large town or city % 17.4% 100.0% Health Status Notes 100% (6) of persons with no formal education have access to ARTs 87.5% (112) of persons with primary level education have access to ARTs; 1.6% (2) do not and 10.9% (14) do not know 87.7% (265) of persons with secondary level education have access to ARTs; 7.6% (23) do not and 4.6% (14) do not know 94.8% (55) of persons with secondary education have access to ART and 5.2% (3) do not know. Don't No; know; Yes; College/Uni College/Uni College/Uni versity; versity; 03 versity; 55 Don't No; know; Secondary Secondary school; school; Don't know; No; Primary school; school; 2 14 Yes; Primary school; 112 Don't Yes; know NoSecondary school; 265 Yes Don't No; Yes; know; No No No formal formal education; education; 0 6 Health Status Notes Of the PLHIVs who responded to this query, 89.1% (131) who live in rural areas have access to ARTs; 4.8% (7) do not and 6.1% do not know. Of the PLHIVs who responded to this query, 88.7% (243) who live in rural areas have access to ARTs; 5.5% (15) do not and 5.8% (16) do not know. Of the PLHIVs who responded to this query, 7% (60) who live in rural areas have access to ARTs; 4.3% (3) do not and 8.7% (6) do not know. 72

73 Health Status Notes Access to Antiretroviral Treatment Even if not Using It Don't know; No; 50yrs 50yrs and and over; over; 8 6 Don't know; 40 No; 40-49yrs; - 49yrs; 10 5 Don't know; 30 No; 30-39yrs; - 39yrs; 7 7 Don't know; 25 No; 25-29yrs; - 29yrs; Yes; yrs; 3 Don't know; No; 20-24yrs; - 24yrs; Yes; yrs; 4 Don't know; No; 16-19yrs; Yes; - 19yrs; 16-19yrs; Yes; 50yrs and over; 77 Yes; 40-49yrs; 130 Yes; 30-39yrs; Don't know 160 No Yes 66.7% of PLHIVs within the sample (aged 16 to 19 years) have access to ARTs, even if not taking them; 33.3% note that they do not know; 78.8% of PLHIVs within the sample (aged 20 to 24 years) have access to ARTs, even if not taking them; 12.1% do not; Thereafter, the proportions of PLHIVs who claim that they have access increase: 91.3% of PLHIVs within the sample (aged 25 to 29 years) have access to ARTs, even if not taking them; 6.5% note that they do not 92% of PLHIVs within the sample (aged 30 to 39 years) have access to ARTs, even if not taking them; 4% note that they do not 90% of PLHIVs within the sample (aged 40 to 49 years) have access to ARTs, even if not taking them; 3.4% note that they do not 85% of PLHIVs within the sample (aged 50 years and over) have access to ARTs, even if not taking them; 6.6% note that they do not 73

74 Health Status Notes Access to Antiretroviral Treatment Even if not Using It 67% (31) of PLHIVs who have been living with HIV for up to 1 year have access to ARTs, even if not taking them; 13% (6) do not and 19.6% (9) note that they do not know; 90.3% (121) of PLHIVs within the sample who have been living with HIV for between 1 and 4 years have access to ARTs, even if not taking them; 3% (4) do not and 6.7% (9) note that they do not know; 90.5% (180) of PLHIVs within the sample who have been living with HIV for between 5 and 9 years has access to ARTs, even if not taking them; 5.5% (11) do not and 4.0% (8) note that they do not know; 92.9% (65) of PLHIVs within the sample who have been living with HIV for between 10 and 14 years) have access to ARTs, even if not taking them; 1. 4% (1) do not and 5.7% (4) note that they do not know 89.2% (33) of PLHIVs within the sample who have been living with HIV for over 15 years have access to ARTs, even if not taking them; 8.1% (3) do not and 2.7% (1) note that they do not know 6 PLHIVs who were not sure of how long they have been living with HIV note that they do have access to ARTs, even if not taking them. Don't No; Yes; Not know; Not sure; sure; Not sure; Don't know; No; 15yrs 15yrs and and Yes; 15yrs and over; over; 1 3 over; 33 No; Don't 10 -know; 14yrs; 10-14yrs; 1 4 Don't No; 5 know; - 9yrs; 5-9yrs; 11 8 Yes; 10-14yrs; 65 Don't know No Yes Yes; 5-9yrs; 180 Don't know; 1 No; yrs; 94 Yes; 1-4yrs; 121 Don't know; 0 No; 0-1yr; Yes; 6-1yr; - 1yr;

75 Health Status Notes! Access to Antiretroviral Treatment Even if not Using It Transgende Female; r; Don't know; Don't 0 Male; know; Don't 19 know; 12 Transgende Female; r; No; 1No; 16 Male; No; 8 Transgender Female Male Transgende r; Yes; 2 Female; Male; Yes; Yes; % (167) of males in the sample have access to ARTs; 4.3% (4) do not 88.5% (269) of males in the sample have access to ARTs; 5.3% do not 66.7% (2) of transgenders in the sample have access to ARTs; 33.3% (1) do not 75