Constructing a Stigma and Discrimination Index: Hopes, Dreams, and Lessons Learned

Transcription

1 Constructing a Stigma and Discrimination Index: Hopes, Dreams, and Lessons Learned March 2006

2 Constructing a Stigma and Discrimination Index: Hopes, Dreams, and Lessons Learned March 2006 This publication was produced for review by the United States Agency for International Development. It was prepared by Dr. Lori Bollinger, POLICY Project. The author s views expressed in this publication do not necessarily reflect the views of the United States Agency for International Development or the United States Government.

3 Contents Executive Summary...iv Introduction...1 Review of Indicators...2 Drafting of Stigma Index and Questionnaire...2 Field Tests and Results...3 New Directions...5 Results for Kenya and Tanzania...6 Summary and Next Steps...7 Appendix A: Stigma and Discrimination Index...8 Appendix B: Overall Weighting Structure of Index...20 Appendix C: Stigma and Discrimination Index (Mexico, 2004)...24 Appendix D: Stigma and Discrimination Index (South Africa, 2004)...38 Appendix E: UNAIDS/IPFF Meeting: List of Participants...53 Appendix F: PLHIV Level Indicators (UNAIDS)...58 Appendix G: Letter from Kenyan Consultant...63 iii

4 Executive Summary Without a consistent methodology to measure stigma and discrimination (S&D), it is difficult to monitor and evaluate reduction interventions. Although some indices have been developed, no standardized method has been adopted that encompasses all relevant dimensions of S&D. This activity s objectives were to design an index on HIV/AIDS-related stigma and discrimination based on existing studies of S&D indicators, prepare and test a survey, field the survey in various countries, and finally, create an index for each of the countries surveyed. The indicators were developed in conjunction with the USAID Interagency Working Group (IWG) on Stigma and Discrimination and formed part of an effort headed by the UNAIDS Secretariat and International Planned Parenthood Federation, which were designing a similar index. This index was different than other indices developed by Futures Group, which are calculated based on expert opinion obtained through surveys. For this index, much larger samples were needed, including three different population groups (community, facility/provider, persons living with HIV). Thus, instead of gathering expert opinions, existing studies that reported results for the relevant indicators were reviewed, and the index was constructed based on these results. The survey was implemented and studies were gathered in Mexico, Kenya, South Africa, and Tanzania. These countries were selected because they were most likely to have relevant studies. The results indicate that, in each country, the number of studies with the necessary indicators was extremely low. In fact, the amount of data was so limited that it was not possible to construct a valid index for any of the countries. Thus, the final recommendation of this report is to continue efforts to achieve an international consensus on a set of indicators and subsequent questions that can be used to measure stigma and discrimination. Furthermore, after the consensus is reached, the indicators should be widely disseminated so that all surveys and interventions are using the same standard methodology. iv

5 Introduction Without a consistent methodology to measure HIV/AIDS stigma and discrimination (S&D), it is difficult to monitor and evaluate reduction interventions. Although some indices have been developed, no standardized method has been adopted that encompasses all relevant dimensions of S&D. Some indices examine the attitudes of people in society toward persons living with HIV, while other indices evaluate perceptions of loneliness, social support, or the quality of life of persons living with HIV. In addition, it is difficult to draft survey questions that will have unbiased results, as most questions regarding stigma and discrimination are hypothetical in nature. Thus, an important area of research is to develop S&D indicators and a resulting index to evaluate reduction interventions. This activity s objectives were to develop an S&D index based on existing research on S&D indicators, prepare and test a survey, field the survey in various countries, and finally, create an S&D index for each of the countries surveyed. The index would be used for advocacy, policy development, strategic planning, documentation, and evaluation efforts. The tasks of the project were to Review literature on S&D indicators and existing indices, including ones identified by the POLICY Project and the USAID Interagency Working Group (IWG); Using the literature review, develop a draft S&D index to be validated by experts; Prepare a draft questionnaire that would measure the indicators in an unbiased way; Hold an experts meeting to review the draft S&D index and questionnaire; Finalize the draft questionnaire based on the results of the experts meeting; Field test the questionnaire to evaluate the questions and resulting index; Finalize the questionnaire based on the results; Hire consultants from other countries to implement the survey; Field the survey in each country; and Compile the questionnaire results, analyze them, and write a final report. Originally, the methodology for this index was going to be similar to the methodology followed in the construction of other indices by the Futures Group, such as the AIDS Program Effort Index (API), the Family Planning Effort (FPE) Index, and the Maternal and Neonatal Program Effort Index (MNPI). This methodology consisted of surveying a group of experts in various countries on their opinions about a variety of statements, primarily related to program effort. However, it quickly became clear that an S&D index would have to use a different methodology. Because the statements relate to either (1) the community as a whole, (2) providers and/or medical facilities, or (3) persons living with HIV themselves, samples would have to be much larger than the samples for previous indices to measure stigma and discrimination in a meaningful way. In addition, samples would have to be drawn from different population groups, increasing the complexity of the survey process. Because of these difficulties, a different approach was used to construct this index. After the indicators were identified, all available studies that reported on any of the indicators were gathered in Mexico, Kenya, South Africa, and Tanzania, and an index was constructed for each country based on these studies. The final results show that few studies report on the recommended indicators. In fact, data were so limited that reliable and valid indices could not be constructed for any of the countries selected, except Tanzania, which is a special case, described below. 1

6 Review of Indicators During an initial literature review of the indicators and indices currently available, it became apparent that the nature of HIV/AIDS-related stigma and discrimination was quite different than the nature of the other subjects for which Futures Group has constructed indices. For each other index the Family Planning Effort (FPE), the AIDS Program Effort Index (API), and the Maternal and Neonatal Program Effort Index (MNPI) key opinion leaders were surveyed regarding their opinions about the characteristics of service delivery for their respective programs. Between 20 and 25 experts were interviewed for each of these surveys, but, in the case of the API, different sets of experts were used for different components of the survey. In the case of HIV-related stigma and discrimination, however, it quickly became apparent that the methodology used for the other index efforts would not be appropriate for an S&D index. Different population groups needed to be asked different questions. In addition, the sample size of the groups needed to be much larger than individuals; for example, a community-level survey needs to be nationally representative. Implementing this type of survey, however, was beyond the scope of this activity. Instead, it was agreed that this project would follow an alternative strategy: gather existing studies that reported on identified S&D indicators and construct an index based on existing work. Although each individual study might have a less-than-ideal sample size, the compilation of all of the results makes it possible to achieve an unbiased result. In addition, gathering information from existing studies could provide an inventory of what currently existed and indicate gaps to be filled regarding the evaluation of reduction interventions. Subsequent to this initial effort, the IWG held a workshop on February 10, 2004, with POLICY support, to refine the S&D indicators published in USAID s 2003 Expanded Response Guide to Core Indicators for Monitoring and Reporting on HIV/AIDS Programs. 1 A list of indicators was prepared and organized according to three different population groups: community, facility/provider, and persons living with HIV. Initial questions were also suggested to capture the different indicators. These results formed the basis of the S&D index. Drafting of Stigma Index and Questionnaire Based on the results of the IWG workshop, a survey form was designed to facilitate the gathering of relevant studies and organization of their reported indicators (see Appendix A). In addition, an initial structure of the index was drafted, including the design of a weighting structure (see Appendix B). The index was broken down by the three identified population groups community, facility/provider, and persons living with HIV and each level of the index was weighted equally (33 percent each). Under each level, between two and six indicators were also weighted equally in the calculation of the respective level s score. Finally, under each indicator, the questions measuring the relevant indicator were weighted equally when calculating the indicator s score. This methodology follows the previous methodologies used in the other indices described above. 1 POLICY Project, ICRW, Horizons, MEASURE Evaluation HIV/AIDS-related Stigma and Discrimination Indicators Development Workshop Report. Available at: 2

7 When reporting results, because significant variability is highly likely within the three levels, each level s scores should be reported separately, in addition to reporting the overall score for the entire index. POLICY also recommends that characteristics of the level of statistical significance be reported along with the scores (e.g., number of studies used to calculate the indicator, sample size in the studies, etc.). Field Tests and Results After the initial survey and index were devised, they were presented internally to staff working on stigma issues, including POLICY leaders in Mexico (Mo Kexteya) and South Africa (Siyam kela). The draft questionnaire and index were revised, and consultants were hired to field test the questionnaire in Mexico and South Africa. These countries were chosen because they were most likely to have a large number of studies reporting on the required indicators. The results of the field tests are shown in Table 1. The overall index score, shown in the last column, is a weighted average of the scores for the three levels: community, facility/provider, and persons living with HIV. A high score implies a high level of stigma. Table 1. Field Test Results for a Stigma Index (Higher score implies a higher level of stigma) Community Level Facility/ Provider Level Persons Living with HIV Level Overall Index Mexico 14.8% 36.2% 37.5% 29.5% South Africa 47.5% 58.0% N/A 52.8% The results in Table 1 need to be qualified immediately, as so few indicators were available that the calculation of the index is not meaningful. An initial evaluation of the index would imply that stigma is higher in South Africa than in Mexico at the community and facility/provider levels and for the overall index. Note that no existing studies reported on any of the recommended indicators for the level corresponding to persons living with HIV in South Africa. It also appears that stigma at the community level is lower than at the facility/provider level in both Mexico and South Africa and also lower than for the level corresponding to persons living with HIV in Mexico. Table 2 shows detailed results for Mexico; the completed questionnaire, including a bibliography of the studies that are cited, can be found in Appendix C. The scores calculated for each indicator are shown in the second column, while the overall scores for each level are shown in the final column. Recall that the overall scores for each level are based on an equally weighted average of the relevant indicators; these overall scores are the same as the level scores reported in Table 1. No studies report results for any of the questions that constitute indicators #2 or #4 at the facility/provider level for Mexico. Most indicators have only one or two questions supporting their calculation. One indicator has six questions; one has five; and one has four (see Appendix C for complete details). It is clear from examining even these limited results that it is important to evaluate a group of different indicators within a particular level, as the scores vary enormously. Indicator scores range from percent at the 3

8 community level; from percent at the facility/provider level; and from 0 80 percent at the level for persons living with HIV. Table 2. Stigma Index for Mexico (Higher score implies a higher level of stigma) Score Number of questions Overall score Community Level 14.8% Indicator #1: Discrimination 6.6% 1 Indicator #2: Shame/Blame 23.0% 6 Facility/Provider Level 36.2% Indicator #1: Programs w/ policies 30.0% 1 Indicator #2: Health facilities w/ policies Indicator #3: Facility enforcing policies 65.0% 1 Indicator #4: People aware of policies Indicator #5: % w/ nondisc. attitudes 33.1% 5 Indicator #6: % reporting nondisc. care 16.6% 1 Persons Living with HIV Level 37.5% Indicator #1: Discrimination 16.6% 4 Indicator #2: Fear of discrimination 80.0% 2 Indicator #3: Disclosure 0.0% 1 Indicator #4: Excluded from services 53.3% 2 Table 3. Stigma Index for South Africa (Higher score implies a higher level of stigma) Score Number of questions Overall score Community Level 47.5% Indicator #1: Discrimination Indicator #2: Shame/Blame 47.5% 4 Facility/Provider Level 58.0% Indicator #1: Programs w/ policies 58.0% 1 Indicator #2: Health facilities w/ policies Indicator #3: Facility enforcing policies Indicator #4: People aware of policies Indicator #5: % w/ nondisc. attitudes Indicator #6: % reporting nondisc. care Persons Living with HIV Level Indicator #1: Discrimination Indicator #2: Fear of discrimination Indicator #3: Disclosure Indicator #4: Excluded from services As shown in Table 3, only two indicators have results reported; Indicator #2 for the community level has four questions, while Indicator #1 for the facility/provider level has only one. See Appendix D for complete results of the South Africa questionnaire and a bibliography of data sources. 4

9 The consultants who conducted the field tests gave the following feedback on the questionnaire and the overall effort to build a stigma index: Mexico: Access to data was quite limited even official studies were not easily available. Sometimes studies reported qualitative, not quantitative data. Many of the surveys are based on hypothetical situations and, therefore, report what people say rather than what they do. The index leaves out advocacy/policy efforts, as well as the media (note: one of the elements of the Mo Kexteya project was stigma and discrimination in the media). South Africa: Although there was an enormous volume of published literature regarding HIV/AIDS stigma and discrimination, quantitative data were extremely limited. More widespread stigma and discrimination was expected, which led the consultant to wonder whether actual behavior had changed or respondents were just reporting correct behavior. Overall, the consultant expected stigma and discrimination to decrease the availability of antiretroviral therapy and employment opportunities (employers would adapt by increasing contract workers, etc.) Stigma and discrimination might increase as questions arise regarding a fair distribution of resources (e.g., if a person living with HIV gets a disability grant and people without HIV do not). These results were presented, along with results from other projects, at an IWG meeting on S&D indicators on June 7, Feedback from this group confirmed the general conclusions to date few relevant studies exist, and results need to be reported carefully, with acknowledgment of data limitations. New Directions Given the lack of relevant studies available even in countries where extensive research on stigma and discrimination has been performed POLICY, in consultation with USAID, decided not to implement the questionnaire in the other USAID focus countries, as stated in the original workplan, but rather field the survey in only two other countries. Tanzania and Kenya were chosen; those countries had the largest number of studies available. POLICY also decided to use some of the newly available funds to sponsor a write-up of the state-of-theart in S&D indicators based on the June 7, 2005, meeting. This report, Can We Measure HIV/AIDSrelated Stigma and Discrimination: Current Knowledge about Quantifying Stigma in Developing Countries, is now online ( and available in hard copy. In addition, POLICY decided to use the new funds to pursue gaining international consensus on indicators for HIV/AIDS-related stigma and discrimination. The project contacted the appropriate people at the UNAIDS Secretariat, where efforts were already underway to develop a stigma index for persons 2 Bollinger, L Stigma & Discrimination Indicators Working Group: An Update from the Field. June, Available at: 5

10 living with HIV. POLICY attended a meeting sponsored by UNAIDS and International Planned Parent Federation (IPPF) in Geneva in August 2005 that addressed all three levels of the index. 3 The Geneva meeting was extremely successful and was attended by a large number and variety of participants (see Appendix E for the list of participants). After significant effort, the list of indicators originally suggested by the USAID IWG on Stigma and Discrimination for persons living with HIV was expanded and agreed upon (see Appendix F extracted from the online report). Agreement was also reached on the list of community and facility/provider indicators, which were also recommended by USAID s IWG on Stigma and Discrimination. Kevin Osborne of IPPF agreed to take the lead on preparing a questionnaire and fielding a survey for the level of the index pertaining to persons living with HIV. POLICY agreed to take the lead on moving forward with the community and facility/provider levels. Results for Kenya and Tanzania The consultant for Kenya was unable to find any studies that reported on indicators that matched the ones in the questionnaire, so no results for Kenya are reported here. The consultant noted in her correspondence that results for some interventions should be available some time in 2006 (see Appendix G), but that, at the time of her review, no pertinent studies could be identified. The results for Tanzania are shown in Table 4. They are somewhat unusual in their degree of completeness because the IWG had tasked the International Center for Research on Women with performing a field-test of the indicators agreed upon at the February 4, 2004, meeting. The stigma index is based on these indicators. The report of this field test is the only source for the statistics below. So, although it appears that this index contains more information that the indices for Mexico and South Africa, in fact, all of the results are based on just one study. Overall stigma appears to be lower in Tanzania than in either Mexico or South Africa, although again, it is important to point out that these indices should probably not be compared at all. In particular, the portion of the index for persons living with HIV for Tanzania is lower than that for Mexico by almost 25 percentage points, with 13 percent of people living with HIV in Tanzania reporting stigma, compared with 37.5 percent of Mexican people living with HIV reporting stigma. The facility/provider level of stigma is about the same in Mexico and Tanzania (approximately 35%), while it is higher in South Africa (58%). Finally, community-level stigma, as measured here, is lowest in Mexico (14.8%), somewhat higher in Tanzania (21.6%), and the highest in South Africa (47.5%). 3 UNAIDS Meeting on development of index on human rights, stigma and discrimination by and for people living with HIV. Report of the Meeting. Geneva, Switzerland: UNAIDS. Available at 6

11 Table 4. Stigma Index for Tanzania (Higher score implies a higher level of stigma) Score Number of questions Overall score OVERALL STIGMA INDEX 23.0% Community Level 21.6% Indicator #1: Discrimination 4.5% 8 Indicator #2: Shame/Blame 38.7% 8 Facility/Provider Level 34.3% Indicator #1: Programs w/ policies Indicator #2: Health facilities w/ policies Indicator #3: Facility enforcing policies Indicator #4: People aware of policies Indicator #5: % w/ nondisc. attitudes 34.3% 3 Indicator #6: % reporting nondisc. care Persons Living with HIV Level 13.0% Indicator #1: Discrimination 12.9% 6 Indicator #2: Fear of discrimination 16.7% 7 Indicator #3: Disclosure Indicator #4: Excluded from services 8.5% 2 Summary and Next Steps A methodology for an index measuring HIV/AIDS-related stigma and discrimination was developed and implemented in four countries: Mexico, Kenya, South Africa, and Tanzania. The results showed that few studies reported on the set of indicators required for the index, even in countries where extensive S&D research had been performed. This activity included extensive consultation with both the USAID-funded IWG on Stigma and Discrimination and a similar effort spearheaded by UNAIDS and the IPPF. All organizations agreed to a draft final index, consisting of three main levels of population groups: community, facility/provider, and persons living with HIV. UNAIDS and the IPPF agreed to take the lead on gathering data for the level pertaining to people living with HIV, and POLICY agreed to take the lead on the community and facility/provider levels. As such, the final recommendation of this report is to continue efforts to achieve an international consensus on a set of indicators and subsequent questions that can be used as indicators for stigma and discrimination. Furthermore, after the consensus is reached, the indicators should be widely disseminated so that all surveys and interventions are using the same set of consistent indicators. One possible way forward for the community and facility/provider levels is to design DHS modules that can be used to gather data for these two levels. These modules could then be used as the basis for global technical work when DHS and Service Provision Assessment surveys are implemented or as templates for evaluating interventions in the field. 7

12 APPENDIX A STIGMA AND DISCRIMINATION INDEX (S&DI) COUNTRY: CONSULTANT NAME: ADDRESS: TEL: FAX: DATE: GENERAL COMMENTS: 8

13 POPULATION-BASED SURVEYS Please list the names and dates of the population-level surveys that have been carried out over the last five years, as well as details of the relevant implementing agencies. Examples of population-based surveys include Demographic and Health Surveys (DHS), Multiple Indicator Cluster Surveys (MICS), Behavioral Surveillance Surveys (BSS), etc. Please continue on the back of this page if necessary. Survey Year Name and Address of Implementing Agency

14 RESULTS FROM OTHER SURVEYS AND REPORTS Please list the complete citations for other surveys addressing the issue of HIV-related stigma and discrimination that have been carried out over the last five years. These surveys and reports include surveys of attitudes and behavior of providers, surveys associated with interventions to reduce HIVrelated stigma and discrimination, the AIDS Program effort Index (API), etc. Please continue on the back of this page if necessary. Citation 1. Year of Survey

15 I. COMMUNITY-LEVEL INDICATORS The best sources for these indicators are population-based surveys, such as DHS, MICS, and/or BSS. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. Indicator #1: Percent (of general population or community) with knowledge of experienced discrimination due to known or perceived HIV status over the last year. Result Source Institutional Level Discrimination 1. % of people who personally know someone who has been refused services because of HIV status or perceived status over the last year. % who personally know someone who has lost or been denied a job because of HIV/AIDS % who personally know someone who has lost or been denied housing because of HIV/AIDS % who personally know someone who has been refused education because of HIV/AIDS % who personally know someone who has been refused health care services because of HIV/AIDS 2. % of people who know of someone in their community/neighborhood who has been refused services because of HIV status or perceived status over the last year. % who personally know someone who has lost or been denied a job because of HIV/AIDS? % who personally know someone who has lost or been denied housing because of HIV/AIDS? % who personally know someone who has been refused education because of HIV/AIDS? % who personally know someone who has been refused health care services because of HIV/AIDS? 11

16 Indicator #1 - Continued Interpersonal Level Discrimination 3. % of people who personally know someone who has been socially isolated because of HIV status or perceived status over the last year. a. % who personally know someone who has been abandoned by their family because of HIV/AIDS b. % who personally know someone who has been excluded at social gatherings because of HIV/AIDS c. % who personally know someone who has been made to use separate eating utensils because of HIV/AIDS d. % who personally know someone who is no longer visited at home because of HIV/AIDS 4. % of people who know of someone who has been socially isolated because of HIV status or perceived status over the last year. a. % who know of someone who has been abandoned by their family because of HIV/AIDS b. % who know of someone who has been excluded at social gatherings because of HIV/AIDS c. % who know of someone who has been made to use separate eating utensils because of HIV/AIDS d. % who know of someone who is no longer visited at home because of HIV/AIDS CONFRONTING DISCRIMINATION 5. % of people who know of someone in community/ neighborhood who has advocated for, stood up for, or showed support for a person know or perceived to be PLHA over the last year Result Source 12

17 Indicator #2: Percent of (general population or community) with nondiscriminatory attitudes towards those known or perceived to be PLHA. Result Source Blame Domain 1. % of people who judge or blame PLHAs for their illness. % who agree that AIDS is a punishment for bad behavior % who agree that people with AIDS deserve what they get % who agree that X group is to be blamed for AIDS Shame Domain 2. % of people who would feel shame if associated with a person living with HIV/AIDS over the last year. % who agree that they would feel ashamed if someone in their family got AIDS % who agree that they would not feel ashamed to go to a social event with a person known to be HIVpositive % who agree that they would not feel embarrassed to tell people that a relative died of AIDS % who personally know someone who has been refused health care services because of HIV/AIDS? Fear of Casual Contact Domain 3. % of people who would not have casual contact with a PLHA because worried about contagion % who agree that they would not buy from a food seller with AIDS because they might get it % who agree that they would not share utensils with a person with AIDS because they might get it % who agree that they would not sit next to a person with AIDS because they might get it 13

18 Indicator #2 - Continued Supporting Rights of PLHA Domain 4. % of people who have positive attitudes towards the rights of PLHAs % who agree that people with AIDS should not be refused health care because they have AIDS % who agree that people with AIDS should have the right to marry % who agree that children with AIDS should be allowed to go to school 14

19 II. FACILITY/PROVIDER LEVEL INDICATORS The best sources for these indicators are facility or provider level surveys. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. Facility Level Indicators Result Source Indicator #1: Percent of programs or institutions that have policies to protect against discrimination by protecting client rights and providing recourse (Possible source: API) Indicator #2: Percent of health facilities that have policies to protect against discrimination by protecting client rights and providing recourse Indicator #3: Percent of institutions/facilities enforcing policies guaranteeing access/rights to PLHA Provider Level Indicators Indicator #4: Percent of people in institutions/facilities (e.g., managers, health care workers) who are aware of policies guaranteeing access/rights to PLHA Result Source Indicator #5: Percent of health care 15

20 providers with non-discriminatory attitudes toward people living with HIV/AIDS (Average of responses to various questions): % of providers taking special precautions for HIV/AIDS patients % of providers who believe persons with positive serostatus should be isolated % of providers who believe that TB is curable in a TB patient % of providers who would wear a mask for protection % of providers who believe in compulsory testing for all admitted to the hospital % of providers who believe in compulsory testing for high risk groups % of providers who provide counseling with their testing % of providers who discriminate in how they prescribe medications % of providers who disclose status of a patient to anyone other than the patient % of providers who believe that someone other than the patient should know the status of a patient % of providers who have told an HIV positive woman that she should not have children % of providers who provide RH care to HIV positive women Indicator #6: Percent of health care providers who report they would use nondiscriminatory care 16

21 III. PLHA LEVEL INDICATORS The best sources for these indicators are surveys of people living with HIV/AIDS. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. PLHA Level Indicators Result Source Indicator #1: Percent of PLHA over the last year reporting experiences of HIV-related stigma and/or discrimination. (Average of answers to various questions) % who report being physically assaulted as a result of HIV positive status % who report being assaulted with a weapon as a result of HIV positive status % who report being threatened as a result of HIV positive status % who report being teased or insulted as a result of HIV positive status % who report objects are not willing to be shared as a result of HIV positive status % who report food prepared by was refused as a result of HIV positive status % who report being excluded from social/familial activities as a result of HIV positive status % who report being refused services as a result of HIV positive status % who report receiving lower quality of health care as a result of HIV positive status % who report HIV status was revealed without their consent 17

22 Indicator #2: Percent of PLHA over the last year reporting fear of HIV-related stigma and/or discrimination. (Average of answers to various questions) % who report having been afraid of being physically assaulted as a result of HIV positive status % who report having been afraid of being assaulted with a weapon as a result of HIV positive status % who report having been afraid of being threatened as a result of HIV positive status % who report having been afraid of being teased or insulted as a result of HIV positive status % who report having been afraid of objects not willing to be shared as a result of HIV positive status % who report having been afraid of that food prepared by would be refused as a result of HIV positive status % who report having been afraid of being excluded from social/familial activities as a result of HIV positive status % who report having been afraid of being refused services as a result of HIV positive status % who report having been afraid of receiving lower quality of health care as a result of HIV positive status % who report having been afraid that HIV status would be revealed without their consent Indicator #3: Percent of PLHA who have disclosed their serostatus to various key people (family members, intimate partner, health care providers, neighbor, employers, media, etc.) 18

23 Indicator #4: Percent of PLHA who in the past year chose not to access (or excluded themselves from): (Average of various answers) Health care Education opportunities Support Friendships Indicator #5: Percent of PLHA who have experienced discrimination and who have also accessed the system for remedies 19

24 APPENDIX B OVERALL WEIGHTING STRUCTURE OF INDEX November 2004 DRAFT Overall Weight in Index Weight in Group Weight in Subgroup Label 33% COMMUNITY LEVEL INDICATORS 50% Indicator #1 33% Institutional level discrimination 33% Interpersonal level discrimination 33% Confronting discrimination 50% Indicator #2 25% Blame Domain 25% Shame Domain 25% Fear of Casual Contact Domain 25% Supporting Rights of PLHA Domain 33% FACILITY/PROVIDER LEVEL INDICATORS 20% Indicator #1 20% Indicator #2 20% Indicator #3 20% Indicator #4 x % 20% Indicator #5???? Indicator #6 33% PLHA LEVEL INDICATORS 25% Indicator #1 x % 25% Indicator #2 25% Indicator #3 25% Indicator #4???? Indicator #5 x number of possible questions x number of possible questions 20

25 I. COMMUNITY LEVEL INDICATORS a. Indicator #1: Percent (of general population or community) with knowledge of experienced discrimination due to known or perceived HIV status over the last year. i. Institutional Level Discrimination - % of people who personally know someone who has been refused services because of HIV status or perceived status over the last year. - % of people who know of someone in their community/neighborhood who has been refused services because of HIV status or perceived status over the last year. ii. Interpersonal Level Discrimination - % of people who personally know someone who has been socially isolated because of HIV status or perceived status over the last year. - % of people who know of someone in their community/neighborhood who has been socially isolated because of HIV status or perceived status over the last year. (FROM DHS/MICS/BSS SURVEYS???) iii. Confronting Discrimination - % of people who know of someone in their community/neighborhood, who has advocated for, stood up for, showed support for a person known or perceived to be PLHA over the last year. b. Indicator #2: Percent of (general population or community) with nondiscriminatory attitudes towards those known or perceived to be PLHA. i. Blame Domain - % of people who judge or blame PLHAs for their illness ii. Shame Domain - % of people who would feel shame if associated with a person living with HIV/AIDS over the last year iii. Fear of Casual Contact Domain - % of people who would not have casual contact with a PLHA because worried about contagion 21

26 iv. Supporting Rights of PLHA Domain v. - % of people who have positive attitudes towards the rights of PLHAs II. FACILITY/PROVIDER LEVEL INDICATORS a. Indicator #1: Percent of programs or institutions that have policies to protect against discrimination by protecting client rights and providing recourse b. Indicator #2: Percent of health facilities that have policies to protect against discrimination by protecting client rights and providing recourse c. Indicator #3: Percent of institutions/facilities enforcing policies guaranteeing access/rights to PLHA d. Indicator #4: Percent of health care providers with non-discriminatory attitudes toward people living with HIV/AIDS Average of responses to various questions, e.g.: % of providers taking special precautions for HIV/AIDS patients % of providers. e. Indicator #5: Percent of people in institutions/facilities (e.g., managers, health care workers) who are aware of policies guaranteeing access/rights to PLHA f. Indicator #6: Percent of providers who report they would use nondiscriminatory care III. PLHA LEVEL INDICATORS a. Indicator #1: Percent of PLHA (within a specified timeframe) reporting experiences of HIV-related stigma and/or discrimination. i. Average of answers to various questions (answer categories: Never, Rarely, Sometimes, or Often) - number of times physically assaulted as a result of HIV+ status - number of times assaulted with a weapon - number of times threatened - number of times teased or insulted - number of times not willing to share objects - number of times refused to eat food prepared by - number of times excluded from social/familial activities - number of times services refused because 22

27 - number of times received lower quality of health care - number of times HIV status revealed without consent b. Indicator #2: Percent of PLHA (within a specified timeframe) reporting fear of HIV-related stigma and/or discrimination i. Average of answers to same questions as in (a) above, adapted using number of times been afraid that others will c. Indicator #3: Percent of PLHA who have disclosed their sero-status to various key people (family members, intimate partner, health care providers, neighbor, employers, media, etc.) d. Indicator #4: Percent of PLHA who in the past x time period, chose not to access (or excluded themselves from) i. Healthcare ii. Education opportunities iii. Support iv. Friendships e. Indicator #5: Percent of PLHA who have experienced discrimination and who have also accessed the system for remedies 23

28 APPENDIX C STIGMA AND DISCRIMINATION INDEX (S&DI) 2004 COUNTRY: Mexico CONSULTANT NAME: Cesar Infante ADDRESS: Av. Universidad 655, Colonia Santa María Ahuacatitlán. C.P , Cuernavaca, Morelos, México TEL: FAX: cinfante@insp.mx DATE: 09/03/2005 GENERAL COMMENTS: The general structure of the index is clear and allows and differentiated analysis on the social spaces where PLHA face stigma and discriminatory attitudes. Nevertheless, an Index as structured as this limits the incorporation of new indicators such as those that have to do with stigma in the media or at policy/advocacy level. I think that the index should be rebuilt on the results and analysis from different countries. 24

29 POPULATION-BASED SURVEYS Please list the names and dates of the population-level surveys that have been carried out over the last five years, as well as details of the relevant implementing agencies. Examples of population-based surveys include Demographic and Health Surveys (DHS), Multiple Indicator Cluster Surveys (MICS), Behavioral Surveillance Surveys (BSS), etc. Please continue on the back of this page if necessary. Survey Year Name and Address of Implementing Agency 1. Mobile populations and HIV/AIDS in México and Central America, National Institute of Public Health 2. National survey of political culture and citizenship practices, Secretaria de Gobernación e Instituto Federal Electoral

30 RESULTS FROM OTHER SURVEYS AND REPORTS Please list the complete citations for other surveys addressing the issue of HIV-related stigma and discrimination that have been carried out over the last five years. These surveys and reports include surveys of attitudes and behavior of providers, surveys associated with interventions to reduce HIV-related stigma and discrimination, the AIDS Program effort Index (API), etc. Please continue on the back of this page if necessary. Citation 1. Mo Kexteya REDUCTION OF STIGMA AND DISCRIMINATION RELATED TO HIV/AIDS IN MEXICO Internal stigma Year of Survey 2003 INSP With the collaboration of the Mexican Network of PLHAs, Colectivo Sol, LetraS, FRENPAVIH, Empresa Medilex, CENSIDA as well as several individuals and support from Policy Project, Macro International, and USAID 2. Mo Kexteya REDUCTION OF STIGMA AND DISCRIMINATION RELATED TO HIV/AIDS IN MEXICO Stigma among health care providers 2003 INSP With the collaboration of the Mexican Network of PLHAs, Colectivo Sol, LetraS, FRENPAVIH, Empresa Medilex, CENSIDA as well as several individuals and support from Policy Project, Macro International, and USAID 3. Mo Kexteya REDUCTION OF STIGMA AND DISCRIMINATION RELATED TO HIV/AIDS IN MEXICO Stigma in the media 2003 INSP With the collaboration of the Mexican Network of PLHAs, Colectivo Sol, LetraS, FRENPAVIH, Empresa Medilex, CENSIDA as well as several individuals and support from Policy Project, Macro International, and USAID 4. HIV/Legal check up (pilot study) INSP and UCLA 5. HIV/AIDS at the work place AIDS responsibility project, Policy, USAID

31 Citation 7. Year of Survey

32 IV. COMMUNITY-LEVEL INDICATORS The best sources for these indicators are population-based surveys, such as DHS, MICS, and/or BSS. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. Indicator #1: Percent (of general population or community) with knowledge of experienced discrimination due to known or perceived HIV status over the last year. Result Source Institutional Level Discrimination 1. % of people who personally know someone who has been refused services because of HIV status or perceived status over the last year. % who personally know someone who has lost or been denied a job because of HIV/AIDS % who personally know someone who has lost or been denied housing because of HIV/AIDS % who personally know someone who has been refused education because of HIV/AIDS % who personally know someone who has been refused health care services because of HIV/AIDS 6.6 % HIV/AIDS legal check up 5. % of people who know of someone in their community/neighborhood who has been refused services because of HIV status or perceived status over the last year. % who personally know someone who has lost or been denied a job because of HIV/AIDS? % who personally know someone who has lost or been denied housing because of HIV/AIDS? % who personally know someone who has been refused education because of HIV/AIDS? % who personally know someone who has been refused health care services because of HIV/AIDS? 28

33 Indicator #1 - Continued Interpersonal Level Discrimination 6. % of people who personally know someone who has been socially isolated because of HIV status or perceived status over the last year. a. % who personally know someone who has been abandoned by their family because of HIV/AIDS b. % who personally know someone who has been excluded at social gatherings because of HIV/AIDS c. % who personally know someone who has been made to use separate eating utensils because of HIV/AIDS d. % who personally know someone who is no longer visited at home because of HIV/AIDS 7. % of people who know of someone who has been socially isolated because of HIV status or perceived status over the last year. a. % who know of someone who has been abandoned by their family because of HIV/AIDS b. % who know of someone who has been excluded at social gatherings because of HIV/AIDS c. % who know of someone who has been made to use separate eating utensils because of HIV/AIDS d. % who know of someone who is no longer visited at home because of HIV/AIDS Result % Source CONFRONTING DISCRIMINATION 5. % of people who know of someone in community/ neighborhood who has advocated for, stood up for, or showed support for a person know or perceived to be PLHA over the last year 29

34 Indicator #2: Percent of (general population or community) with nondiscriminatory attitudes towards those known or perceived to be PLHA. Blame Domain 1. % of people who judge or blame PLHAs for their illness. % who agree that AIDS is a punishment for bad behavior % who agree that people with AIDS deserve what they get % who agree that X group is to be blamed for AIDS Shame Domain 2. % of people who would feel shame if associated with a person living with HIV/AIDS over the last year. % who agree that they would feel ashamed if someone in their family got AIDS % who agree that they would not feel ashamed to go to a social event with a person known to be HIVpositive % who agree that they would not feel embarrassed to tell people that a relative died of AIDS % who personally know someone who has been refused health care services because of HIV/AIDS? Fear of Casual Contact Domain 3. % of people who would not have casual contact with a PLHA because worried about contagion % who agree that they would not buy from a food seller with AIDS because they might get it % who agree that they would not share utensils with a person with AIDS because they might get it % who agree that they would not sit next to a person Result _5.6 % _71.5 % MSM:26.54% % _22.79 % Source Mo kexteya health care providers Mo Kexteya health care providers Mo Kexteya health care providers 30

35 with AIDS because they might get it Indicator #2 - Continued Supporting Rights of PLHA Domain 4. % of people who have positive attitudes towards the rights of PLHAs % who agree that people with AIDS should not be refused health care because they have AIDS % who agree that people with AIDS should have the right to marry % who agree that children with AIDS should be allowed to go to school _81.2 % % Mo Kexteya health care providers Mo Kexteya health care providers 31

36 V. FACILITY/PROVIDER LEVEL INDICATORS The best sources for these indicators are facility or provider level surveys. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. Facility Level Indicators Indicator #1: Percent of programs or institutions that have policies to protect against discrimination by protecting client rights and providing recourse (Possible source: API) Indicator #2: Percent of health facilities that have policies to protect against discrimination by protecting client rights and providing recourse Result 70 % Source HIV/AIDS At the workplace Indicator #3: Percent of institutions/facilities enforcing policies guaranteeing access/rights to PLHA 35 % HIV/AIDS at the workplace Provider Level Indicators Indicator #4: Percent of people in institutions/facilities (e.g., managers, health care workers) who are aware of policies guaranteeing access/rights to PLHA Result Source 32

37 Indicator #5: Percent of health care providers with non-discriminatory attitudes toward people living with HIV/AIDS (Average of responses to various questions): % of providers taking special precautions for HIV/AIDS patients % of providers who believe persons with positive serostatus should be isolated % of providers who believe that TB is curable in a TB patient % of providers who would wear a mask for protection % of providers who believe in compulsory testing for all admitted to the hospital % of providers who believe in compulsory testing for high risk groups _3.49 % _2.68 % MSM % SW % No nationals % To every Mexican % Health care providers % Mo kexteya health care providers Mo kexteya health care providers Mo kexteya health care providers Mo kexteya health care providers % of providers who provide counseling with their testing % of providers who discriminate in how they prescribe medications % of providers who disclose status of a patient to anyone other than the patient % of providers who believe that someone other than the patient should know the status of a patient % of providers who have told an HIV positive woman that she should not have children % (employee) % Mo kexteya health care providers Mo kexteya 33

38 % of providers who provide RH care to HIV positive women % health care providers Indicator #6: Percent of health care providers who report they would use nondiscriminatory care _83.4 % Mo kexteya health care providers 34

39 VI. PLHA LEVEL INDICATORS The best sources for these indicators are surveys of people living with HIV/AIDS. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. PLHA Level Indicators Result Source Indicator #1: Percent of PLHA over the last year reporting experiences of HIV-related stigma and/or discrimination. (Average of answers to various questions) % who report being physically assaulted as a result of HIV positive status % who report being assaulted with a weapon as a result of HIV positive status % who report being threatened as a result of HIV positive status % who report being teased or insulted as a result of HIV positive status _13 % HIV/AIDS legal check up % who report objects are not willing to be shared as a result of HIV positive status % who report food prepared by was refused as a result of HIV positive status % who report being excluded from social/familial activities as a result of HIV positive status % who report being refused services as a result of HIV positive status % who report receiving lower quality of health care as a result of HIV positive status _33.3 % 13.3 % HIV/AIDS legal check up HIV/AIDS legal check up % who report HIV status was revealed without their consent _6.6 % HIV/AIDS legal check up 35

40 Indicator #2: Percent of PLHA over the last year reporting fear of HIV-related stigma and/or discrimination. (Average of answers to various questions) % who report having been afraid of being physically assaulted as a result of HIV positive status % who report having been afraid of being assaulted with a weapon as a result of HIV positive status % who report having been afraid of being threatened as a result of HIV positive status % who report having been afraid of being teased or insulted as a result of HIV positive status % who report having been afraid of objects not willing to be shared as a result of HIV positive status 80 % HIV/AIDS legal check up % who report having been afraid of that food prepared by would be refused as a result of HIV positive status % who report having been afraid of being excluded from social/familial activities as a result of HIV positive status % who report having been afraid of being refused services as a result of HIV positive status _80 % HIV/AIDS legal check up % who report having been afraid of receiving lower quality of health care as a result of HIV positive status % who report having been afraid that HIV status would be revealed without their consent Indicator #3: Percent of PLHA who have disclosed their serostatus to various key people (family members, intimate partner, health care providers, neighbor, employers, media, etc.) 100 % HIV/AIDS legal check up 36

41 Indicator #4: Percent of PLHA who in the past year chose not to access (or excluded themselves from): (Average of various answers) Health care Education opportunities Support 100 % HIV/AIDS legal check up (Officialgovernment support) HIV/AIDS legal check up Friendships 6.6 % HIV/AIDS legal check up Indicator #5: Percent of PLHA who have experienced discrimination and who have also accessed the system for remedies 37

42 APPENDIX D STIGMA AND DISCRIMINATION INDEX (S&DI) 2004 COUNTRY: South Africa CONSULTANT NAME: Joanne Stein ADDRESS: 56 Bellevue Rd Upper Gardens Cape Town 8001 South Africa TEL: (0) FAX: jostein@telkomsa.net DATE: 11April 2005 GENERAL COMMENTS: DATA Included on Index: CSSR Study: I have only filled in comparable indicators which are close enough to your indicators to warrant inclusion. However, none of the 4 variables (two casual contact domain indicators, one blame domain indicator, and one supporting rights of PLHA domain you request were identical to those on the CSSR study. Thus, % who agree that they would not buy food from food seller with AIDS because they might get it appears in CSSR study in terms of fresh vegetables rather than food (15%). Likewise, your indicator % who agree that they would not share utensils with a person with AIDS because they might get it appears in CSSR study as "would not drink from the same bottle of water as an HIV infected friend. (20%) Regarding the blame domain: Your indicator % who agree that AIDS is a punishment for bad behaviour is phrased as % who agree that AIDS is a punishment for sleeping around (27%). 38

43 Supporting rights of PHLA Domain: Your indicator is % who agree that people with AIDS should not be refused health care because they have AIDS. The CSSR study question is phrased in terms of the % of people who think the government should not provide free health care (2%) Data not included on Index: The HSRC/ Nelson Mandela study also has indicators for the casual contact domain but they are not the same as any you request and therefore are not filled in on the form. For your information, these are: 25.9% not willing to share a meal 17.7% not willing to sleep in same room 5.7% not happy to talk to HIV positive person. Another possibly relevant indicator from the Nelson Mandela/HSRC study is: Only 18.4% of sexually active youth had been tested for HIV. Institutional level discrimination: Acc to Marion Stevens, Centre For Health Policy, University of the Witwatersrand, 58% of institutions in her survey have HIV/AIDS policies. However, these are workplace surveys so this finding doesn t t fit into your index. According to the Health Systems Trust Eskom Study: a quarter of workers (27.5%) feared being fired if they had AIDS. However, 85% knew that Eskom allows HIV positive employees to continue working. 20% were not comfortable sharing work tools or shaking hands. 35% were not comfortable to allow a PWHA to eat from their plate of food. ¾ s said HIV pos people would experience social isolation, nearly half said they would be subject to rumours and gossip. 18% felt workers with HIV would experience verbal abuse. Almost 90% agreed with the statement, If I have AIDS, people will avoid me. Horizons Programme, Tulane School of Public Health and tropical Medicine, New Orleans, Louisiana; only authors and publisher mentioned. Free Download available from: Indicator no 5: Health care workers Again, there is nothing to fit your indicators. However, the HSRC "Impact of HIV/AIDS on the health sector looks at stigma but the only available percentage is that 42.7% of health workers thought there was stigma attached to HIV in their hospital/clinic and 77 % thought there was stigma in their communities but there are no specific indicators to match these findings in your index. (pp.67-8; Impact of AIDS on the health sector. HSRC Free download from: Confronting discrimination: The CADRE Out on the Streets national survey shows trends towards social mobilization around AIDS among South African youth. 16% of respondents were already members of an AIDS club 39

44 48% had worn a red ribbon or AIDS message on clothing. (Free Download from: Additional comments on the S&DI: Indicator 3 p11. refers to the percentage of PLHA who have disclosed to another: Given that this is a requirement for ARV treatment in the South African public sector, this is not a reliable indicator in the South African context. 40

45 POPULATION-BASED SURVEYS Please list the names and dates of the population-level surveys that have been carried out over the last five years, as well as details of the relevant implementing agencies. Examples of population-based surveys include Demographic and Health Surveys (DHS), Multiple Indicator Cluster Surveys (MICS), Behavioral Surveillance Surveys (BSS), etc. Please continue on the back of this page if necessary. Survey Year Name and Address of Implementing Agency 1. Nelson Mandela/HSRC Study of HIV/AIDS: South African National HIV prevalence, Behavioural risks and Mass Media Household Survey 2002 Human Sciences Research Council Private Bag x9182 Cape Town 8000 South Africa Data referred to in general comments as does not fit indicators cf. pp Measuring HIV/AIDS stigma (Defined in text as CSSR study: The data referred to is in Appendix A pp30-31 cf. attached file. Full paper available at 3. The Impact of HIV/AIDS on Health Care workers employed in the Health Sector Free Download from: ers.ac.za/full_title_info. asp?id= Centre for Social Science Research. University of Cape Town Private Bag Rondebosch Free Download from a/pubs_cssr.html 2003 Human Sciences Research Council Data referred to in general comments as does not fit indicators cf. pp Free download from: za

46 Survey Year Name and Address of Implementing Agency

47 RESULTS FROM OTHER SURVEYS AND REPORTS Please list the complete citations for other surveys addressing the issue of HIV-related stigma and discrimination that have been carried out over the last five years. These surveys and reports include surveys of attitudes and behavior of providers, surveys associated with interventions to reduce HIV-related stigma and discrimination, the AIDS Program effort Index (API), etc. Please continue on the back of this page if necessary. Citation 1. Year of Survey

48 VII. COMMUNITY-LEVEL INDICATORS The best sources for these indicators are population-based surveys, such as DHS, MICS, and/or BSS. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. Indicator #1: Percent (of general population or community) with knowledge of experienced discrimination due to known or perceived HIV status over the last year. Result Source Institutional Level Discrimination 1. % of people who personally know someone who has been refused services because of HIV status or perceived status over the last year. % who personally know someone who has lost or been denied a job because of HIV/AIDS % who personally know someone who has lost or been denied housing because of HIV/AIDS % who personally know someone who has been refused education because of HIV/AIDS % who personally know someone who has been refused health care services because of HIV/AIDS 8. % of people who know of someone in their community/neighborhood who has been refused services because of HIV status or perceived status over the last year. % who personally know someone who has lost or been denied a job because of HIV/AIDS? % who personally know someone who has lost or been denied housing because of HIV/AIDS? % who personally know someone who has been refused education because of HIV/AIDS? % who personally know someone who has been refused health care services because of HIV/AIDS? 44

49 Indicator #1 - Continued Interpersonal Level Discrimination 9. % of people who personally know someone who has been socially isolated because of HIV status or perceived status over the last year. a. % who personally know someone who has been abandoned by their family because of HIV/AIDS b. % who personally know someone who has been excluded at social gatherings because of HIV/AIDS c. % who personally know someone who has been made to use separate eating utensils because of HIV/AIDS d. % who personally know someone who is no longer visited at home because of HIV/AIDS 10. % of people who know of someone who has been socially isolated because of HIV status or perceived status over the last year. a. % who know of someone who has been abandoned by their family because of HIV/AIDS b. % who know of someone who has been excluded at social gatherings because of HIV/AIDS c. % who know of someone who has been made to use separate eating utensils because of HIV/AIDS d. % who know of someone who is no longer visited at home because of HIV/AIDS CONFRONTING DISCRIMINATION 5. % of people who know of someone in community/ neighborhood who has advocated for, stood up for, or showed support for a person know or perceived to be PLHA over the last year Result Source 45

50 Indicator #2: Percent of (general population or community) with nondiscriminatory attitudes towards those known or perceived to be PLHA. Result Source Blame Domain 1. % of people who judge or blame PLHAs for their illness. % who agree that AIDS is a punishment for bad behavior % who agree that people with AIDS deserve what they get % who agree that X group is to be blamed for AIDS Shame Domain 2. % of people who would feel shame if associated with a person living with HIV/AIDS over the last year. % who agree that they would feel ashamed if someone in their family got AIDS % who agree that they would not feel ashamed to go to a social event with a person known to be HIVpositive % who agree that they would not feel embarrassed to tell people that a relative died of AIDS % who personally know someone who has been refused health care services because of HIV/AIDS? Fear of Casual Contact Domain 3. % of people who would not have casual contact with a PLHA because worried about contagion 27% CSSR (J21) % who agree that they would not buy from a food seller with AIDS because they might get it % who agree that they would not share utensils with a person with AIDS because they might get it % who agree that they would not sit next to a person with AIDS because they might get it _15% CSSR (J12) 20% CSSR (J11) 46

51 Indicator #2 - Continued Supporting Rights of PLHA Domain 4. % of people who have positive attitudes towards the rights of PLHAs % who agree that people with AIDS should not be refused health care because they have AIDS % who agree that people with AIDS should have the right to marry % who agree that children with AIDS should be allowed to go to school 2% CSSR (J3) 47

52 VIII. FACILITY/PROVIDER LEVEL INDICATORS The best sources for these indicators are facility or provider level surveys. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. Facility Level Indicators Result Source Indicator #1: Percent of programs or institutions that have policies to protect against discrimination by protecting client rights and providing recourse (Possible source: API) Indicator #2: Percent of health facilities that have policies to protect against discrimination by protecting client rights and providing recourse Indicator #3: Percent of institutions/facilities enforcing policies guaranteeing access/rights to PLHA Provider Level Indicators Indicator #4: Percent of people in institutions/facilities (e.g., managers, health care workers) who are aware of policies guaranteeing access/rights to PLHA Result Source Indicator #5: Percent of health care 48

53 providers with non-discriminatory attitudes toward people living with HIV/AIDS (Average of responses to various questions): % of providers taking special precautions for HIV/AIDS patients % of providers who believe persons with positive serostatus should be isolated % of providers who believe that TB is curable in a TB patient % of providers who would wear a mask for protection % of providers who believe in compulsory testing for all admitted to the hospital % of providers who believe in compulsory testing for high risk groups % of providers who provide counseling with their testing % of providers who discriminate in how they prescribe medications % of providers who disclose status of a patient to anyone other than the patient % of providers who believe that someone other than the patient should know the status of a patient % of providers who have told an HIV positive woman that she should not have children % of providers who provide RH care to HIV positive women Indicator #6: Percent of health care providers who report they would use nondiscriminatory care 49

54 IX. PLHA LEVEL INDICATORS The best sources for these indicators are surveys of people living with HIV/AIDS. Please list the appropriate data and the relevant source that respond to the questions below. You may use an abbreviated citation (e.g., 2001 DHS, Jones et al.) if the surveys are listed in the initial list of surveys and citations above. Possible sources are suggested for each question, where appropriate. PLHA Level Indicators Result Source Indicator #1: Percent of PLHA over the last year reporting experiences of HIV-related stigma and/or discrimination. (Average of answers to various questions) % who report being physically assaulted as a result of HIV positive status % who report being assaulted with a weapon as a result of HIV positive status % who report being threatened as a result of HIV positive status % who report being teased or insulted as a result of HIV positive status % who report objects are not willing to be shared as a result of HIV positive status % who report food prepared by was refused as a result of HIV positive status % who report being excluded from social/familial activities as a result of HIV positive status % who report being refused services as a result of HIV positive status % who report receiving lower quality of health care as a result of HIV positive status % who report HIV status was revealed without their consent 50

55 Indicator #2: Percent of PLHA over the last year reporting fear of HIV-related stigma and/or discrimination. (Average of answers to various questions) % who report having been afraid of being physically assaulted as a result of HIV positive status % who report having been afraid of being assaulted with a weapon as a result of HIV positive status % who report having been afraid of being threatened as a result of HIV positive status % who report having been afraid of being teased or insulted as a result of HIV positive status % who report having been afraid of objects not willing to be shared as a result of HIV positive status % who report having been afraid of that food prepared by would be refused as a result of HIV positive status % who report having been afraid of being excluded from social/familial activities as a result of HIV positive status % who report having been afraid of being refused services as a result of HIV positive status % who report having been afraid of receiving lower quality of health care as a result of HIV positive status % who report having been afraid that HIV status would be revealed without their consent Indicator #3: Percent of PLHA who have disclosed their serostatus to various key people (family members, intimate partner, health care providers, neighbor, employers, media, etc.) 51

56 Indicator #4: Percent of PLHA who in the past year chose not to access (or excluded themselves from): (Average of various answers) Health care Education opportunities Support Friendships Indicator #5: Percent of PLHA who have experienced discrimination and who have also accessed the system for remedies 52

57 APPENDIX E Development of index on human rights, stigma and discrimination by and for people living with HIV Geneva, Switzerland August 2005 Room 1, World Council of Churches (WCC) Lori Bollinger Senior Economist Futures Group 80 Glastonbury Blvd Glastonbury, CT USA Tel: Fax: lbollinger@futuresgroup.com Mr Andrew Doupe HIV/AIDS and Legal Consultant Rue de Saint Jean Genève Switzerland Tel: doupe@hivnet.ch Mr Nicolas Fasel Human Rights Officer Research and Right to Development Branch UN Office of the High Commissioner for Human Rights (OHCHR) Palais des Nation 8-10 Avenue de la Paix 1211 Geneva 10 Switzerland nfasel@ohchr.org 53