STIGMA INDEX BOTSWANA SURVEY REPORT BOTSWANA

Transcription

1 STIGMA INDEX SURVEY REPORT STIGMA INDEX BOTSWANA SURVEY REPORT BOTSWANA August 2014 In collaboration with Botswana Network of People Living With HIV & AIDS (BONEPWA+), NACA, Ministry of Health, UNAIDS and UNDP Botswana Network of People Living With HIV & AIDS (BONEPWA+) P.O Box 1599 Mogoditshane Tel: Fax: STIGMA INDEX SURVEY REPORT BOTSWANA i

2 ACKNOWLEDGEMENTS Botswana Network of People Living With HIV (BONEPWA+) would like to thank National AIDS Coordinating Agency (NACA), Joint United Nations Programme on HIV/AIDS (UNAIDS), United Nations Development Programme (UNDP), and Bomme Isago, for their support that made it possible to carry out this survey. We would like to extend our gratitude to the Ministry of Health for the support and allowing the survey to be conducted in the IDCC. Most importantly BONEPWA+ would like to acknowledge the invaluable role of people living with HIV who participated in this survey as interviewers and interviewees. We thank them for their time and for sharing their experiences. We trust that these findings will contribute towards improving the health and quality of their lives and that of people living with HIV in general. We also thank the enumeration teams who went around the districts collecting data for this survey led by Ms. Tina Matshelo Matlhaga, Ms. Baetsi Tebagano and Ms. Maitumelo Selepeng. Their hard work, diligence, and dedication ensured the success of this survey. We are grateful to the Technical Working Group that provided technical advice and guidance all throughout the duration of the survey, comprised of Ms. Sheila Omom (BONEPWA+), Ms. Irene Maina (UNAIDS), Mr. Peter Chibatamoto (NACA), Ms. Mpho Mmelesi (UNAIDS), Ms. Matshelo Matlhaga, Ms. Baetsi Tebagano and Ms. Botsalano Basimolodi (NACA). The team ensured the smooth implementation and provided quality assurance for the survey from its inception to the final report. Finally, we thank the Global Network of People Living with HIV (GNP+), International Community for Women Living with HIV (ICW), International Planned Parenthood Federation (IPPF) for providing the Stigma Index tool that was adapted for the survey. Page 2 STIGMA INDEX SURVEY REPORT BOTSWANA ii

3 FOREWORD I am pleased to avail the People Living with HIV Stigma Index Survey Report for Botswana to all the stakeholders including civil society, development partners, communities, People Living with HIV as well as those affected by HIV. The PLHIV Stigma Index Survey was conducted in collaboration with PLHIV through BONEPWA+, BoMme Isago, NACA, BOFWA and with technical support from MOH, UNAIDS and University of Botswana. The PLHIV Stigma Index Survey will contribute to Botswana s commitment to the 2011 UN High Level Meeting on HIV/AIDS, Member States to reduce or all together eliminate stigma, discrimination and associated violence targeted to people who are infected or affected by HIV and AIDS.. Available evidence indicates that HIV stigma and discrimination are major issues affecting People Living with HIV (PLHIV) and their families. Stigma manifests in discriminatory and sometimes violent treatment of people living with HIV, their families and others affected by HIV. Stigma and discrimination continue to undermine prevention, treatment and care of people living with HIV and AIDS and complicates decisions about testing, disclosure of HIV status, and the ability to negotiate prevention behaviors, including the use of family planning services. The People Living with HIV Stigma Index Survey, aimed at establishing the different forms, levels and manifestations of stigma and discrimination against PLHIV in Botswana. Understanding stigma and discrimination will better inform evidence based programming and planning as well as advocacy for policy changes necessary to create an enabling social, policy and legal environment for PLHIV in Botswana. BONEPWA+ is very proud to have taken the leadership for the Stigma Index Survey process. BONEPWA+ hopes that the survey results will be disseminated as widely as possible, in-order to catalyze action at all levels of the national HIV and AIDS response, and in particular promoting the development of sectoral and organizational action plans. Kgoreletso Molosiwa Executive Director /Botswana Network of People Living with HIV Page 3 STIGMA INDEX SURVEY REPORT BOTSWANA iii

4 Table Of Contents EXECUTIVE SUMMARY BACKGROUND OF THE STUDY Introduction The country context HIV situation in Botswana Context of Stigma and Discrimination in Botswana Stigma Index Survey in Botswana The Rationale for the Botswana Stigma Index survey Goals and Objectives of the Survey RESEARCH METHODOLOGY The Sample Data Collection Method Pilot Testing Ethical Considerations...9 Consent Process...9 Confidentiality FINDINGS Description of Respondents Experience of Stigma and Discrimination from Other People Stigma and/or discrimination experience at family level Reasons for exclusion Access to Work, Health Services and Education Access to work Access to accommodation Exploring reasons for denied access to accommodation and work Access to education Access to health care Internal stigma and fears Rights, Laws and Policies Violations of rights Effecting change Providing support Experience of testing, disclosure, treatment and having children Testing and diagnosis Disclosure and confidetiality Treatment Having children CONCLUSION AND RECOMMENDATIONS Conclusion Socio-demographic Information Experience of HIV related Stigma Exclusions from accessing services Internalised stigma and fears Rights, Laws And Policies Effecting change Testing and Diagnosis Access to ARV Treatment Having Children Study Limitations Recommendations...38 National AIDS Coordinating Agency...38 Other Government Sectors...39 Civil Society Organizations...40 Appendix A: List of Documents consulted...41 Appendix B: Proportion of The Study Sample Size By District...42 STIGMA INDEX SURVEY REPORT BOTSWANA iv

5 LIST OF FIGURES Figure 1: Map of Dirstrict Pattern of HIV Prevalence in Botswana... 5 Figure 2: Length of time living with HIV by Sex Figure 3: Length of time in a relationship by Sex Figure 4: Employment status by Sex Figure 5: Average monthly household Income Figure 6: Number of days not having enough food to eat Figure 7: Respondents sexual activity by Sex Figure 8: Experiences of stigma and discrimination by perceived reasons Figure 9: Reasons for denied access to accommodation and work Figure 10: Experience of the internalized stigma because of HIV status Figure 11: Knowledge about UN Declaration of Commitment on HIV/AIDS consider using a graph and combining knowledge and reading of UN declaration and NSF into one Figure 12: Knowledge about NSF II Figure 13: Experience of abuse of rights in past 12 months Figure 14: Reasons for not attempting to get legal redress by gender Figure 15: Knowledge that organizations or groups could help if one experiences stigma or discrimination Figure 16: Other organizations known by the respondents Figure 17: Involvement in PLHIV programmes and activities Figure 18: Recommendations to PLHIV organisations from respondents Figure 19: Reasons respondents were tested for HIV Figure 20: Perceived health status by gender Figure 21: Access to ARV prophylaxis for PMTCT during pregnancy LIST OF TABLES Table 1: Comparison estimated PLHIV population and Survey Sample Size... 8 Table 2: Demographic Characteristics Table 3:Respondents with AIDS orphans in their households Table 4: Number of respondents belonging to key populations Table 5: Stigma/discrimination experience during the last 12 months Table 6: Family stigma or discrimination experienced during the 12 last months Table 7: Reasons for HIV-related stigma and discrimination Table 8: Experience of difficulties in accessing services due to HIV status Table 9: Respondents access to health services Table 10: Activities avoided in the because of positive HIV status Table 11: Perceived Fears of stigma/discrimination by gender Table 12: Actions taken in response to any violation by gender Table 13: Attempts to get redress for abuse of rights by gender Table 14: PLHIV`s support to other PLHIV Table 15: The factors influencing decision to test by gender Table 16: Disclosure of HIV status Table 17: People`s reactions upon learning about positive HIV status Table 18: Experience of pressure to disclose HIV status by gender Table 19: Access and usage of ART and medication for opportunistic Infections Table 20: Respondents who have a HIV-positive child/children Table 21: Number who received counselling about RH options since being diagnosed HIV Table 22: Number advised by health care professional not to have a child Table 23: Number coerced by health care professional into sterilisation Table 24: ART access dependent of form(s) of contraceptive STIGMA INDEX SURVEY REPORT BOTSWANA v

6 LIST OF ACRONYMS ACRONYMS AIDS ART ASRH BAIS BOFWA BONELA BONEPWA+ CSO GIEPA GIPA GNP+ HIV HTC HRDC ICW IDCC IPPF+ LGBTI MIEPA MDG MOH NACA NAP+SAR NGO NSF OIs PHDP PLHIV PMTCT SADC FULL NAME Acquired Immuno Deficiency Syndrome Anti-Retroviral Therapy Adolescent Sexual Reproductive Health Botswana AIDS Impact Study Botswana Family Welfare Association Botswana Network on Ethics Law and HIV/AIDS Botswana Network of People Living With HIV/AIDS Central Statistics Office Greater Involvement and Empowerment of People Living with HIV and AIDS??? Greater Involvement of People living with HIV/AIDS Global Network of People Living with HIV Human Immunodeficiency Virus HIV Testing and Counseling Health Research and Development Committee International Community of Women Living with HIV Infection Disease Control Clinic International Planned Parenthood Federation Lesbians, Gays, Bisexual, Transgender and Intersexed Meaningful Involvement and Empowerment of People Living with HIV/AIDS??? Millennium Development Goals Ministry of Health National AIDS Coordinating Agency Network of African People living with HIV and AIDS for Southern Africa Region Non-Governmental Organization National Strategic Framework Opportunistic Infections Positive Health Dignity and Prevention People Living with HIV Prevention of Mother To Child Transmission of HIV Southern African Development Community SRHR SPSS TWG UB UN UNAIDS UNDP UNGASS UNFPA Sexual Reproductive Health Rights Statistical Package for Social Sciences Technical Working Group University of Botswana United Nations Joint United Nations Programme on HIV/AIDS United Nations Development Program United Nations Special Session on HIV/AIDS United Nations Population Fund STIGMA INDEX SURVEY REPORT BOTSWANA vi

7 EXECUTIVE SUMMARY Introduction This study was led by the Botswana Network of People Living with HIV and AIDS (BONEPWA+) in This partnership study was with led the by National the Botswana AIDS Coordinating Network of People Agency Living (NACA), with and HIV and Botswana AIDS (BONEPWA+) Family Welfare in partnership Association (BOFWA) with the with National technical AIDS support Coordinating from Ministry Agency of (NACA), Health (MOH), and Botswana Joint UN Family Programme Welfare on HIV/AIDS Association (UNAIDS) (BOFWA) and with the technical University support of Botswana from Ministry (UB). The of Health study (MOH), aimed to Joint measure UN Programme the extent on of HIV-related HIV/AIDS (UNAIDS) stigma and discrimination the University experienced of Botswana by (UB). people The study living aimed with HIV to measure (PLHIV), the in extent order to of HIV-related provide evidence stigma for and advocacy, discrimination policy change experienced and programme by people interventions. living with HIV (PLHIV), in order to provide evidence for advocacy, policy change and programme interventions. Methodology The study was conducted using a standard questionnaire that was developed by GNP+, ICW, IPPF and The UNAIDS study for was comparison conducted across using countries. a standard The questionnaire study employed that purposive was developed sampling by GNP+, technique ICW, to IPPF recruit and UNAIDS participants for comparison from IDCCs and across HIV countries. support groups. The study The employed questionnaire purposive was administered sampling technique by trained to recruit PLHIV participants between August from and IDCCs October and HIV support A total groups. of 1232 The questionnaire PLHIV throughout was administered Botswana participated by trained PLHIV in the between study. August and October A total of 1232 PLHIV throughout Botswana participated in the study. Findings on internal and external stigma Major findings Every fourth person living with HIV experiences some sort of internal stigma, such as self-blame. Within a year, over 10% of the study-participants have been exposed to external stigma, such as gossip, verbal insults, while around 5% reported on exclusion of social gatherings. Characteristics of the respondents Majority of the respondents who participated were females at 73%. Disaggregating by other factors, 49% were either married or cohabiting, 42% had secondary school education and 45% were rural area dwellers at the time of the study. Most of the respondents (81%) discovered their HIV positive status in the last ten years. In addition, 17% of the respondents with children reported having one or more HIVpositive child. Experience of stigma and discrimination On internal stigma, 24% harboured feelings of self-blame and 18% felt guilty about their HIV positive status. About a third (29%) made a decision not to have children because of their HIV+ status while 9% avoided having sex. On the other hand, 13% of the respondents had experienced external stigma at least once in the last 12 months. Gossip and verbal insults due to one s HIV status were the main forms of external stigma experienced by respondents, at 39% and 21%, respectively. Fewer respondents reported exclusion from social gatherings and families activities (6% and 5%, respectively). Eight percent (8%) reported that they were refused employment or work opportunity because of their HIV status while 3% reported that they lost their employment or income due to poor health. Of these, 14% thought their HIV status played a role. Nearly 10% of the respondents reported being denied access to reproductive health services. Page 10 STIGMA INDEX SURVEY REPORT BOTSWANA 1 The study showed that 94% of the respondents had voluntarily tested for HIV. Close to nine in ten

8 14% thought their HIV status played a role. Nearly 10% of the respondents reported being denied access to reproductive health services. Experience of testing, disclosure, treatment and having children The study showed that 94% of the respondents had voluntarily tested for HIV. Close to nine in ten (89%) of the respondents received HIV counselling before and after testing. Most respondents disclosed their HIV status to people they were close to such as partners (94%), family members (89%), and health care workers (86%). Majority of the respondents (95%) were on ARV at the time of the study and 92% of women reported they had received ARV for prevention of mother to child transmission. Thirteen percent (13%) of respondents were taking medications to prevent or treat opportunistic infections (OIs). Of those not on treatment for OIs, 57% reported they can access medications. The majority of respondents who had children did not have HIV positive children. 12% of the participants additionally reported to having received advice from health care professionals not to have children. Rights, laws, policies and effecting change Approximately 90% of the respondents had not heard of the UN Declaration of Commitment on HIV/AIDS (UNGASS) and the second National Strategic Framework on HIV/AIDS (NSF II). Nearly 10% reported that their rights had been abused and of these, only 28% attempted legal redress. Overview of experiences and views of PLHIV A majority of the respondents were on ARV and reported on good experiences regarding the disclosure of their HIV status to family, health care workers and partners. The majority of respondents who had children did not have HIV positive children. Every tenth respondent reported however that they received advice from health care professionals not to have children. A clear majority of the respondents are not part of any PLHIV support group, however, they expressed a general wish that the public should be better informed about AIDS. Only 15% of the respondents had confronted, challenged or educated someone who had stigmatised or discriminated against them in the past year. Further, 27% knew of an organisation that would help them if they ever experience stigma or discrimination. The majority (87%) of respondents reported they did not belong to a PLHIV support group. Less than 5% were involved in efforts to develop legislation, policies or guidelines related to HIV. However, 23 % of the respondents felt they had the power to influence legal matters and local government policies. Recommendations Although the study found that most of the PLHIV in Botswana did report high levels of stigma and discrimination, we should be mindful of the fact that most of them had only kept the status amongst their close family members and the peers. Some recommendations from this study for policy and program are outlined below. Policy Page 11 STIGMA INDEX SURVEY REPORT BOTSWANA 2

9 1. Enforce existing labour legislations that address the issue of stigma and discrimination of PLHIV at workplace and promote a non-discriminatory work environment. Program 1. Legal literacy: Campaigns that disseminate information and educate on rights, laws and policies related to HIV through media and community mobilisation are needed and were requested by the participants of the study 2. Strengthen policies and programmes that empower women living with HIV to make informed choices on when to have children and also sensitive health care providers on the reproductive rights of women living with HIV. 3. Organizations working with PLHIV should create and intensify public awareness and knowledge of HIV to enable more appropriate health seeking behaviour based on accurate information as well as to counter HIV-related stigma and discrimination are essential. 4. The MOH scale-up implementation of the Positive Health Dignity and Prevention (PHDP) to address both the internal and external stigma. 5. Put in place a system to measure stigma and discrimination using standardized measures to monitor and evaluate the progress over time. 6. Empower support groups to reach out and offer psychosocial support 7. Further research on stigma is also required as there are indications of internal stigma (gossip, fear of having children and instances of sexual deprivation). STIGMA INDEX SURVEY REPORT BOTSWANA 3 Page 12

10 1. BACKGROUND OF THE STUDY 1.1 Introduction Stigma against PLHIV remains one of the central barriers to effective prevention and management of HIV and AIDS. Unless it is better understood, it will continue to be a serious barrier to HIV testing as well as prevention, treatment and care for PLHIV and impact mitigation of the disease. The UN Secretary General, Ban Ki-Moon stated that Stigma remains the single most important barrier to public action. It is the main reason too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason the AIDS epidemic continues to devastate societies around the world. Ban Ki Moon, Aug 2008 At the 2011 High Level Meeting on AIDS, member states made a bold commitment to eliminate all forms of HIV related stigma and discrimination by It was therefore critical to conduct this study to provide baseline information on the extent of HIV related stigma and discrimination for effective policy and programme action. 1.2 The country context HIV situation in Botswana Botswana s population is estimated at approximately at , most of whom are females (51%) and youth (63.3%) aged 29 years and below. An estimated 18.5% of the population aged 18 months and above are living with HIV. The epidemic has a gender bias with overall higher HIV prevalence among women and girls at 20.8% compared to 15.6% among men and boys. Prevalence among women peaks earlier at age years (50.6%) compared to that of men that peaks at years (43.8%). Further, HIV prevalence results by district and gender, indicate that women remained disproportionally affected with nine districts having estimated female prevalence >20% as compared to only one district found to have male HIV prevalence more than20%. Prevalence is also higher in urban areas compared to rural areas. Over 80% of the people living with HIV are found mainly in the Eastern part of the country across13 of the 24 health districts in Botswana. These districts are: Kweneng East, Gaborone, Serowe/Palapye, South East, Mahalapye, Tutume, Francistown, Kgatleng, Bobirwa, Southern, Selebi-Phikwe, Boteti and Ngamiland. Page 13 STIGMA INDEX SURVEY REPORT BOTSWANA 4

11 Figure 1: Map of District Pattern of HIV Prevalence in Botswana Figure 1: Map of Dirstrict Pattern of HIV Prevalence in Botswana (Source: 2013 Botswana AIDS Impact Study IV) (Source: 2013 Botswana AIDS Impact Study IV) Context of Stigma and Discrimination in Botswana In 2008, Botswana had approximately 350,557 PLHIV, Botswana AIDS Impact Study, (CSO, 2008) The In 2008, Botswana had approximately 350,557 PLHIV, Botswana AIDS Impact Study, (CSO, 2008). The same study also found that 56% of the population has ever taken an HIV test indicating low testing rates, same study also found that 56% of the population has ever taken an HIV test indicating low testing rates, which may be attributable to HIV-related stigma. which may be attributable to HIV-related stigma. Discrimination on the basis of one s HIV status is a violation of human rights and is thought to hinder Discrimination on the basis of one s HIV status is a violation of human rights and is thought to hinder PLHIV to live positively and openly. The Modes of Transmission Study (2010) conducted in Botswana, PLHIV identifies to live stigma positively and discrimination and openly. as The one Modes of the of drivers Transmission of the epidemic Study (2010) in the conducted country. Programme in Botswana, identifies stigma and discrimination as one of the drivers of the epidemic in the country. Programme reports from Bomme Isago, a network of Women Living with HIV, shows that secrecy surrounding one s HIV status, emanating from fear of violence and rejection by sexual partner, has been a major hindrance to accessing Prevention of Mother to Child Transmission (PMTCT) and ART services. In addition, the 2010 Universal Access report indicated that stigma and discrimination are a major obstacle to the infant feeding programme for children born to HIV positive mothers. It is worth noting that the realization of the STIGMA INDEX SURVEY REPORT BOTSWANA 5 Page 14

12 rights of PLHIV evokes commitment to ensure non-discriminatory access to relevant services within a supportive legal, economic and social environment. The legislative provisions relating to non-discrimination in the constitution of Botswana, the National HIV and AIDS Policy, the Botswana National Strategic Framework and the various guidelines developed to ensure standardised and quality services form the bundle of the legal and policy tools for addressing HIV/AIDS related stigma in Botswana. The laws, policies and guidelines, no doubt, serve as a useful tool to promote the rights of PLHIV. However, full enforcement of the provisions remain a challenge in the realization of the rights of PLHIV. 1.3 Stigma Index Survey in Botswana The Rationale for the Botswana Stigma Index survey This study explored HIV/AIDS stigma and discrimination to establish a baseline and develop relevant advocacy interventions. The study is in line with the current National Strategic Framework which identifies stigma Index as a study that needs to be conducted to provide baseline for measurement and tracking of stigma and discrimination experienced by PLHIV. The expected outcomes of the study are: Evidence to inform policies and programming on stigma influenced by the perspectives of PLHIV Models of best practice for the Greater Involvement of People Living with HIV/AIDS (GIPA). Goals and Objectives of the Survey The goal of the study was to measure stigma and discrimination experienced by PLHIV in Botswana. Specific objectives The following are objectives of the study, to; 1. Establish types and levels of stigma and discrimination against PLHIV in Botswana. 2. Build capacity of PLHIV on research and programme development relating to stigma and discrimination. 3. Provide information for policy and programme development to combat stigma and discrimination in Botswana. STIGMA INDEX SURVEY REPORT BOTSWANA 6 Page 15

13 2. RESEARCH METHODOLOGY Botswana stigma index study was based on the tool developed by (GNP+), IPPF, ICW and UNAIDS. The study adopted a cross sectional design, to describe: perceived experience with stigma and discrimination at community and service provision points. The target population was people living with HIV in Botswana from age 18 years and above regardless of sexual orientation, economic, social and educational background. educational background. 2.1 The Sample This was a cross sectional study which employed study a two-stage sampling design; the first stage This was a cross sectional study which employed study a two-stage sampling design; the first stage being selection of districts and the second being selection of PLHIV from those districts. The districts being selection of districts and the second being selection of PLHIV from those districts. The districts were selected using purposive sampling technique. The guiding principle for selection of districts to be were selected using purposive sampling technique. The guiding principle for selection of districts to be enumerated was the HIV prevalence and geographic location. The study covered both urban and rural enumerated was the HIV prevalence and geographic location. The study covered both urban and rural areas. areas. The study participants were selected from IDCCs and support groups using consecutive sampling The method. study The participants health care worker were selected and the from study IDCCs staff briefed and support the health groups care facility using clients consecutive the sampling purpose method. The health care worker and the study staff briefed the health care facility clients on the purpose method. of the study The during health care morning worker health and talk, the study and provided staff briefed potential the health respondents care facility with clients the contact the details purpose of of the study during morning health talk, and provided potential respondents with the contact details of of the the study study team during leaders morning the health area. The talk, health and provided facility provided potential data respondents collectors with with the an contact interview details room. of the study team leaders in the area. The health facility provided data collectors with an interview room. the For study the support team leaders groups, in BONEPWA+ the area. The and health Bomme facility Isago provided provided data a list collectors of support with groups an interview and contact room. For the support groups, BONEPWA+ and Bomme Isago provided a list of support groups and contact For details the of support the focal groups, persons. BONEPWA+ The focal persons and Bomme briefed Isago the provided support group a list members of support and groups compiled and a contact list of details of the focal persons. The focal persons briefed the support group members and compiled a list of details those interested of the focal in persons. participating The focal in the persons study which briefed was the forwarded support group to the members study team and leader. compiled Interviews a list of those interested in participating in the study which was forwarded to the study team leader. Interviews those were conducted interested at in the participating household in or the any study other which place was preferred forwarded by the to interviewee. the study team leader. Interviews were conducted at the household or any other place preferred by the interviewee. were conducted at the household or any other place preferred by the interviewee. The sample size was calculated using the formula below: The sample size was calculated using the formula below: N= (t 2 pq)/ (d 2 ) N= (t 2 pq)/ (d 2 ) Where; Where; n = minimum sample size required n = minimum sample size required t = z value of confidence level desired (95% confidence level) t = z value of confidence level desired (95% confidence level) p = estimated prevalence in target population (The National adult prevalence rate of 24% in this case). p estimated prevalence in target population (The National adult prevalence rate of 24% in this case). d = precision. The higher the precision desired the larger the sample size will be (5%) is the most d = precision. The higher the precision desired the larger the sample size will be (5%) is the most common d value. common d value. q = 1-p. Therefore; assuming 95% confidence and a precision of 0.05 q = 1-p. Therefore; assuming 95% confidence and a precision of 0.05 N= ( )*0.24*(1-0.24))/ ( ) = Design effect = x 2 = Include 30% refusal rate on n = (168.48). = 730 was the minimum sample size for the Stigma Index. To improve the analysis, the study team decided to double the sample to Page 16 STIGMA INDEX SURVEY REPORT BOTSWANA 7

14 The sample size for each district was computed using the estimated population of people living with HIV 18 years and above from the Botswana AIDS Impact Study III, (CSO, 2008). Table 1: Comparison estimated PLHIV population and Survey Sample Size District HIV Geographic Population of Prevalence Location PLHIV Sample Size Gaborone 17.1% South Francistown 23.1% North Selibe Phikwe 26.5% North Southern 13.3% South Kweneng East 16.7% South Kgatleng 15.8% East Serowe 20% East Ghanzi 13.1% West Bobonong 18.9% East Tutume 20% North Ngami South 19.8% West Kgalagadi 19.1% West South TOTAL Data Collection Method The study employed face-to-face interview technique at IDCCs by PLHIV. The structured questions were programmed into smartphones using Magpi software instead of the conventional paper-based method. For open ended questions, responses were recorded on a notebook. The interviews were conducted in either English or Setswana based on interviewee s preference. Prior to data collection, aone week training for the data collectors, facilitated by UNAIDS NACA, BONEPWA+, and BOFWA was conducted. The purpose of the training was to standardise the data collection methodology and familiarise the study team with the questionnaire to ensure quality. STIGMA INDEX SURVEY REPORT BOTSWANA 8 Page 17

15 2.3 Pilot Testing A pilot study was conducted at South East district to test the data collection tool and procedures. The pilot test allowed the research team to make corrective changes or adjustments before collecting data from the target population. It also allowed the research team to check acceptability and adaptability of the tool to the Botswana setting. 2.4 Ethical Considerations Consent Process Permission to conduct the study was sought from Health Research and Development Committee (HRDC). Permission to recruit participants from IDCC sites and support groups was sought from the relevant authorities to ensure that all rights, dignity and safety of study participants are safe guarded. procedure Participants used were in given the study. information The interviewers about the purpose, also read objectives, the consent potential form and risks the and study benefits information and the sheet procedure to all used participants. in the study. This provided The interviewers information also about read the freedom consent to form participate and the or study withdraw information any sheet given to point all participants. during the This study provided without information any consequences. about the A freedom written to consent participate was or obtained withdraw from at any all given participants point during who willingly the study chose without to participate any consequences. in the study. A written The study consent anticipated was obtained that participants from all participants would be sensitive who willingly and emotionally chose to participate distressed; in the interviewers study. The were study thus anticipated required that to participants have basic would knowledge be sensitive of HIV counselling and emotionally for them distressed; to be able interviewers to initiate referrals. were thus A referral required slip to was have used basic to knowledge facilitate onward of HIV care counselling for such cases. for them to be able to initiate referrals. A referral slip was used to facilitate onward care for such cases. Confidentiality Confidentiality and privacy of respondents was ensured through the use of codes as identifiers, rather Confidentiality than using the and participant s privacy of name. respondents A written was agreement ensured through was also the obtained use of codes from the as identifiers, study teams rather as a than pledge using to keep the all participant s information name. collected A written confidential. agreement was also obtained from the study teams as a pledge to keep all information collected confidential. The database was only accessed by two people coordinating the study. Access to data in the database The was restricted database was by use only of accessed passwords. by Completed two people questionnaires coordinating the were study. only Access accessible to data to the in interviewers, the database was data restricted manager, study by use coordinator of passwords. and Completed team leaders. questionnaires were only accessible to the interviewers, Anonymity data manager, of respondents study coordinator was assured and team by the leaders. use of codes and aggregate analysis. Anonymity of respondents was assured by the use of codes and aggregate analysis. Page 18 STIGMA INDEX SURVEY REPORT BOTSWANA 9

16 3. FINDINGS This chapter presents the results of the study. The section is organised into three main sections namely: Demographic Respondents characteristics experience with of stigma the respondents, and discrimination, including external and internal stigma Respondents Rights, laws and experience policies, with and effecting stigma and change, discrimination, including external and internal stigma 3. Rights, Analysis laws and of policies, respondents and effecting experience change, with: o Analysis testing of respondents and diagnosis, experience with: disclosure testing and and diagnosis, confidentiality, disclosure treatment and having confidentiality, children. treatment and having children. 3.1 Description of respondents This section presents general background information about the study participants. A total of 1232 respondents This section out presents of target general of a background sample of 1460 information consented about to participate the study in participants. the study, resulting A total of in % participation respondents out rate. of However, target of during a sample data of analysis 1460 consented only 1213 to questionnaires participate in the were study, deemed resulting complete in 83% and participation used for analysis. rate. The However, respondents during data were analysis from eight only districts 1213 questionnaires selected using were simple deemed random complete sampling. and used These for districts analysis. were: The Gaborone, respondents Selebi were Phikwe, from Kweneng eight districts East, Southern, selected using Kgatleng, simple Francistown, random sampling. Serowe, These Ghanzi, districts Bobonong, were: Tutume, Gaborone, Ngamiland Selebi Phikwe, South and Kweneng Kgalagadi East, South. Southern, Kgatleng, Francistown, Serowe, Ghanzi, Bobonong, Tutume, Ngamiland South and Kgalagadi South. Table 2 outlines respondents social and demographic characteristics, including age, marital status, educational level and location. The study reveals that 73% were females and 27% were males. Majority of respondents (23%) were aged years. Most of respondents reported being either married or cohabiting 41%, while 21% were single. Furthermore, most respondents (42 %) had secondary education and 7%, had tertiary education. The proportion of male respondents with no formal education was higher (22%) compared to females (11%). Disaggregating by place of residence, 55% were from towns and cities while 45% were from rural areas. Page 19 STIGMA INDEX SURVEY REPORT BOTSWANA 10

17 Table 2: Demographic Characteristics (n=1213) Variables Female (%) Male (%) Age and above Percentage of respondents 73% 27% Marital Status Married or cohabiting Married cohabiting but partner is away In a relationship but not living together Single Divorced/Separated 2 2 Widow/widower 6 2 Percentage of respondents 73% 27% Highest level of Education No formal education Primary school(incomplete) Primary level secondary school (incomplete) Secondary school 14 9 Technical college/university (incomplete) 5 8 Technical/university level 1 1 Percentage of respondents 73% 27% Residence A rural area A small town or village A large town or city Percentage of respondents 73% 27% STIGMA INDEX SURVEY REPORT BOTSWANA 11

18 Figure 2: Length of time living with HIV by Sex From figure 2 above, females reported to have been living with HIV for a longer period compared to men with the highest percentage having lived with HIV for 5 9 years. Most males indicated that they lived with HIV for 1 4 years followed by 15+. Figure 3: Length of time in a relationship by Sex When asked to state the duration they had been involved with their partners, 30%reported to have been with their partners for the past 1-4 years and 29 % for the last 5-9 years. More females reported a longer duration (above 15 years) in their relationships than their male counterparts (see Figure 3). (xaxis to be labelled length of relationship) Page 21 STIGMA INDEX SURVEY REPORT BOTSWANA 12

19 Figure 4: Employment status by Sex (n=1213) An average of 47% respondents indicated that they were unemployed of which 54% were females and 32% males. Among those who were employed, full time employment was predominant at 24% while 7% were in part-time employment and 7% self-employed. Figure 5: Average monthly household Income Most (61%) of the respondents had a monthly household income less than BWP and only 4% had BWP and above. STIGMA INDEX SURVEY REPORT BOTSWANA 13 Page 22

20 Figure 6: Number of days not having enough food to eat (n=1213) Figure 6 shows that just over a half (52%) of the respondents reported at least a member of their household having not enough to eat at the household level in the past month and this ranged from moderate (1 to 5 days) to severe (16 to 20 days). Figure 7: Respondents sexual activity by Sex From figure 7, majority of respondents indicated they are still sexually active since finding out their HIV positive status. It also shows that about 23% of females have stopped engaging in sexual activities since finding out their status compared to 13% of males. STIGMA INDEX SURVEY REPORT BOTSWANA 14 Page 23

21 Table 3:Respondents with AIDS orphans in their households (n=1213) Number of Orphans Gender Total Female Male Total indicates that 81% (988/1213) of the respondents reported that they had no AIDS Table 3 indicates that 81% (988/1213) of the respondents reported that they had no AIDS orphans in their household. Thirty five percent (79/225) of those who had orphans indicated to orphans in their household. Thirty five percent (79/225) of those who had orphans indicated to have one living in their households, and 24% (55/225) had two orphans living in the household. have one living in their households, and 24% (55/225) had two orphans living in the household. Key Populations As indicated in the table 4 below, about 17% (210/1213) of the respondents indicated that they As indicated in the table 4 below, about 17% (210/1213) of the respondents indicated that they belong or in the past belonged to one of the key populations. Of the respondents, 13% reported to belong or in the past belonged to one of the key populations. Of the respondents, 13% reported to being or had been migrant workers and 10% lived with a disability. A small percentage of 3.5% being or had been migrant workers and 10% lived with a disability. A small percentage of 3.5% belonged to indigenous groups, while 2.2% of the respondents indicated being prisoners at one belonged to indigenous groups, while 2.2% of the respondents indicated being prisoners at one stage of their lives. stage of their lives. Table 4: Number of respondents belonging to key populations Key population Male Female Total Percent MSM 0 0 0/ Gay/Lesbian 1 1 2/ Transgender 0 1 1/ Sex Worker 2 5 7/ Migrant Worker / Refugee 0 1 1/ Injecting Drug User 0 1 1/ Internally Displaced Persons / Indigenous group / Prisoner / Disability / Page 24 STIGMA INDEX SURVEY REPORT BOTSWANA 15

22 3.2 Experience of Stigma and Discrimination from Other People This section presents the findings of the study related to perceived stigma at family, community and institutional settings and internalized stigma. Table 5: Stigma/discrimination experience during the last 12 months Experience during the last 12 months Number Never (%) At least once (%) Exclusion from social activities Exclusion from religious activities Exclusion from family activities Aware of being gossiped about Verbal insults, abuse or threats Physical abuse or threats Physical assaulted Average of at least one experience In Table 5, different stigma and discrimination experiences are presented based on the respondents interviewed. On average just above 1-in-10 respondents (13 %) reported having had at least an experience with stigma and/or discrimination from people. The most commonly reported type of stigma is gossip 39% (474/1213), and the least common one was exclusion from religious activities. Table 6: Family stigma or discrimination experienced during the 12 last months Experience during the last 12 months Number Never (%) At least once (%) Psychological pressure or manipulated by husband/wife or partner using HIV status Sexual rejection Other people living with HIV Family member (husband partner, household member) Average of At least one experience 95 5 Page 25 STIGMA INDEX SURVEY REPORT BOTSWANA 16

23 Stigma and/or discrimination experience at family level On average, 95% of the respondents did not experience stigma from the family during the past 12 months. However, 9% (109/1209) experienced psychological pressure or manipulation from their months. However, 9% (109/1209) experienced psychological pressure or manipulation from their husband/wife or partner, during which their HIV status was used against them with 5% reporting husband/wife or partner, during which their HIV status was used against them with 5% reporting sexual rejection. 3% (36/1208) of respondents perceived that they were discriminated against by other sexual rejection. 3% (36/1208) of respondents perceived that they were discriminated against by other PLHIV. Four percent (4%) of respondents family members had experienced stigma and discrimination PLHIV. Four percent (4%) of respondents family members had experienced stigma and discrimination due to the respondent s HIV status. due to the respondent s HIV status. Reasons for exclusion Figure 8: Experiences of stigma and discrimination by perceived reasons Figure 8: Experiences of stigma and discrimination by perceived reasons The majority 64% (42/65)of those who reported exclusion from family activities and 52% (249/480) who stated that they were aware of being gossiped about indicated that these experiences were due to their HIV status. The study also found that the majority 62% (66/106) and 55% (51/92) of those who experienced physical threats and physical assault respectively, blamed other reasons for it. Table 7: Reasons for HIV-related stigma and discrimination. Reasons Number/ Total Percent People are afraid of getting infected with HIV from me 126/ People don't understand how HIV is transmitted/afraid of getting infected by casual contact People think that HIV is shameful and they should not be associated with me 159/ / Religious beliefs or moral judgments 64/ People disapprove of my lifestyle or behaviour 63/ STIGMA INDEX SURVEY REPORT BOTSWANA 17 Page 26

24 I look sick with symptoms associated with HIV 56/ I don't know/ I am not sure of the reasons 780/ The most common reason with 16% of the respondents listed as the cause of their HIV-related stigma or discrimination was noted as being people think that HIV is shameful with the least common being religious belief or moral judgement, disapproval of my lifestyle and I look sick. However, more than half 64% of the respondents who had experienced HIV-related stigma or discrimination were unsure about the exact reason(s). 3.3 Access to Work, Health Services and Education Table 8: Experience of difficulties in accessing services due to HIV status Experience in the last 12 months Never At least once Forced to change place of residence 1097 (20%) 106 (9%) Lost a job or another source of income 646 (12%) 181 (15%) Job description or nature of work changed or have been 797 (15%) 26 (2%) refused promotion Dismissed, suspended or prevented from attending an 609 (11%) 8 (1%) educational institution Child dismissed, suspended or prevented from attending an educational institution 1113 (20%) 2 (0%) Access to work The PLHIV Stigma Index revealed that HIV had significantly affected people s ability to secure and retain The employment, PLHIV Stigma and their Index career revealed progression. that HIV had Over significantly one in ten affected 12% (78/646) people s respondents ability to secure said and that retain they employment, had lost their and job or their other career form progression. of income during Over one the past in ten 1212% months (78/646) as shown respondents in Table 9. said At that the same they time had lost respondents their job or were other asked form if of they income have during been refused the past employment 12 months as or shown work in opportunity At because the same of their time respondents HIV status, only were 8% asked (92/1205) if they said have yes been refused employment or work opportunity because of Although their HIV status, many only respondents 8% (92/1205) attributed said their loss of employment or income to poor health, discrimination Although many also respondents played a role attributed in respondents their loss loss of of employment income or employment. or income Of to those poor who health, lost employment discrimination or also a source played of a income role in a respondents higher percentage loss of of income females or 16%, employment. (5/29) thought Of those that who this was lost due to their HIV status than males 11%, (2/19). When respondents were asked if their job position had been changed or if they had been refused promotion in the past year due to HIV status, 8%, (7/90) of the total number of respondent reported Page 27 STIGMA INDEX SURVEY REPORT BOTSWANA 18

25 that this had occurred to them. Of these, 39%, (4/10) felt this was due to discrimination by employer or co-workers, while 27%, (2/7) attributed the change of position or denial of promotion to a combination of discrimination and poor health Access to accommodation In the last year, 9% (106/1206) of respondents had been forced to change their place of residence or In the last year, 9% (106/1206) of respondents had been forced to change their place of residence or were denied accommodation during the past 12 months as result of their HIV-positive status as shown were denied accommodation during the past 12 months as a result of their HIV-positive status as shown in Table 8. in Exploring reasons for denied access to accommodation and work Figure 9: Reasons for denied access to accomodation and work HIV positive status was blamed for changes in the job description by the majority 39% (10/26) of respondents and only 19% (34/181) by those who lost job. However, it is important to note that reasons other than HIV status rated among the highest (loss of a job accounting for 68%, 123/181, and change of job description at 8%) across the four evaluated areas, (please see Figure 9 above) Access to education The education of PLHIV and their children continues to be affected by their HIV status throughout some parts of the world. Data for the Botswana study however indicated the contrary, where only 1% of respondents had been dismissed, suspended or prevented from attending an educational institution at least once while none had the same happening to their children Access to health care The government of Botswana through the Ministry of Health provides free family planning and reproductive health services at all health facilities including clinics. The majority 91% (1092/1200) of respondents had access to reproductive health services while 9% (108/1200) did not. However, 4% (53/1202) of the respondents said that they were denied family planning services in the past 12 months, while the majority 80% (967/1202) had access to it. STIGMA INDEX SURVEY REPORT BOTSWANA 19 Page 28

26 Another area of health that was evaluated by the study is the denial of health services including dental care because of HIV. A majority 96% (1151/1203) reported that they were never denied health services, 3% (31/1203) experienced it at least once, while 2% reported that it was not applicable to them. Table 9: Respondents access to health services Services Yes No Not Applicable Denied Reproductive 9% (111/1200) 91% (1089) 0% health services Denied FP services 4 % (53/1202) 80 % (967/1202) 15% (182/1202) Denied health services including dental care 3% (31/1203) 96% (1151/1203) 2% (24/1206) 3.4 Internal stigma and fears The PLHIV Stigma Index found disturbingly high levels of internalized stigma manifesting as self blame, The guilt, shame, and self-loathing. It also found that most people living with HIV blamed themselves for guilt, PLHIV shame, Stigma and self-loathing. Index found disturbingly It also found high that levels most of people internalized living with stigma HIV manifesting blamed themselves as self blame, for their own HIV infection. is based on responses with respondents able to provide multiple their guilt, own shame, HIV and infection. self-loathing. Figure It 10 also is based found on that responses most people with living respondents with HIV able blamed to provide themselves multiple for responses. responses. their own HIV infection. is based on responses with respondents able to provide multiple When asked if they experienced any of the feelings depicted in below, the majority of When responses. asked if they experienced any of the feelings depicted in Figure10 below, the majority of respondents affirmed to blaming themselves 24% (289/1213) and feeling guilty 18% (224/1213) in the respondents When asked affirmed if they experienced to blaming themselves any of the 24% feelings (289/1213) depicted and in feeling guilty below, 18% (224/1213) the majority in the of past 12 months as result of their HIV status. The lowest feeling expressed by respondents was feeling past respondents 12 months affirmed as a result to blaming of their themselves HIV status. 24% The lowest (289/1213) feeling and expressed feeling guilty by respondents 18% (224/1213) was a feeling the that they should be punished (2%). past that they 12 months should as be a punished result of their (2%). HIV status. The lowest feeling expressed by respondents was a feeling that they should be punished (2%). Figure 10: Experience of the internalized stigma because of HIV status Page 29 STIGMA INDEX SURVEY REPORT BOTSWANA 20

27 When asked whether their HIV status had led them to deliberately avoid particular activities related to relationships, education, career and health services, nearly 30% (357/1213) reported avoiding having (more) children, 9% (111/1213) reported avoiding having sex in the last 12 months; while only 2% (20/1213) and 1% (8/1213) reported not going to local clinic and to a hospital respectively in the past year. Please refer to Table 10 below. Table 10: Activities avoided in the because of positive HIV status (n=1213) Activities avoided Number Percent Chosen not to attend social gathering(s) 35 3 I have isolated myself from my family and friends 38 3 I took the decision to stop working 16 1 I decided not to apply for a job/work 16 1 I withdrew from education/training 10 1 I decided not to get married 81 7 I decided not to have sex I decided not to have (more) children I avoided going to a local clinic 20 2 I avoided going to a hospital 8 1 None of the above Fears of being gossiped about, verbally insulted, harassed and/or threatened, physically harassed, and physically assaulted by gender are shown in Table 11. In the last year, one in four of all respondents feared being gossiped about, more females are having higher rates than males. Just about one in ten respondents feared being verbally insulted, harassed /threatened. Table 11: Perceived Fears of stigma/discrimination by gender Fears Female Male Total Nb % Nb % Nb % I have been fearful of being gossiped about % 81 26% % I have been fearful of being verbally insulted, 82 71% 33 29% 115 9% harassed /threatened I have been fearful of being physically 47 65% 25 35% 72 6% harassed/threatened I have been fearful of being physically 46 70% 20 30% 66 5% assaulted None of the above % % % Total* % STIGMA INDEX SURVEY REPORT BOTSWANA 21 Page 30

28 When asked if they feared that someone would not want to be sexually intimate with them because of When HIV positive asked if status, they feared only 22% that said someone yes while would the not majority want to 78% be sexually said intimate. with them because of HIV (*Note positive that respondents status, only 22% were said able yes to select while various the majority answers 78% at said the same no. time) (*Note that respondents were able to select various answers at the same time) 3.5 Rights, Laws and Policies This section explored respondents awareness of the Declaration of Commitment on HIV/AIDS and their This knowledge section of explored national respondents laws and policies, awareness as well of as the violation Declaration of rights of Commitment experienced on in HIV/AIDS various settings. and their In knowledge the year 2001, of national the United laws Nations and policies, issued as a well Declaration as violation to urge of rights member experienced states to enhance in various commitment settings. In the to protect, year 2001, respect the and United fulfil Nations the rights issued and a wellbeing Declaration of PLHIV. to urge member states to enhance commitment to Figure protect, 11 respect shows that and there fulfil the is limited rights and awareness wellbeing about of PLHIV. the UN Declaration among PLHIV in Botswana. Only one in shows ten (123/1213) that there of is limited the respondents awareness claimed about the to have UN Declaration heard of the among document PLHIV but in had Botswana. did not nly one in ten (123/1213) of the respondents claimed to have heard of th Only hitherto one know in ten of (123/1213) its existence. of the Of respondents the 123 respondents claimed to who have have heard about of the the document declaration, but one had third did not of itherto know of its existence. Of the 123 respondents who have about t them (33%) had ever read or discussed the contents of this Declaration. With regard to the National hem (33%) had ever read or discussed the contents of this Declaration. Strategic Framework II, nine in ten (90%) respondents were not aware of it. However, for the 115 trategic Framework II, nine in ten (90%) respondents were not aware respondents (10%) who had ever heard of it, 33% had discussed it with others. espondents (10%) who had ever heard of it, 33% had discussed it with othe Figure 11: Knowledge about UN Declaration of Commitment on HIV/AIDS consider using a graph and combining knowledge and reading of UN declaration and NSF into one STIGMA INDEX SURVEY REPORT BOTSWANA 22

29 Figure 12: Knowledge about NSF II Page Violations of rights In order to assess the violation of rights among PLHIV, number of indicators were used, such as In order to assess the violation of rights among PLHIV, a number of indicators were used, such as whether they were forced to submit to medical procedures including HIV testing, denied insurance, whether they were forced to submit to medical procedures including HIV testing, denied insurance, being arrested, forced to disclose HIV status or being detained or quarantined. being arrested, forced to disclose HIV status or being detained or quarantined. The most commonly reported violation of rights was being forced to submit to medical or health The most commonly reported violation of rights was being forced to submit to a medical or health procedure, including HIV testing, (28/1213). Furthermore, only 1% (10/1213) of respondents said they procedure, including HIV testing, (28/1213). Furthermore, only 1% (10/1213) of respondents said they were denied health insurance or life insurance because of HIV status. were denied health insurance or life insurance because of HIV status. Figure 13: Experience of abuse of rights in past 12 months (n=1189) Figure 13: Experience of abuse of rights in past 12 months (n=1189) As depicted in above. 9% of PLHIV interviewed experienced abuse of rights in the past 12 As depicted in Figure 13 above. 9% of PLHIV interviewed experienced abuse of rights in the past 12 months. months. Table 12: Actions taken in response to any violation by gender Actions Female Male Total Tried to get legal redress 25 (26%) 8 (36%) 33 (28%) Total Tried to get government employee to take action 14 (16%) 3 (15%) 17 STIGMA INDEX SURVEY REPORT BOTSWANA 23 Page 32 Page 32

30 (16%) Total Tried to get a local/national politician to take action 3 (3%) 2 (10%) 5 (5%) Total In response to violations of their rights as people living with HIV, only 28% (33/117) of In response to violations of their rights as people living with HIV, only 28% (33/117) of In respondents response had to violations attempted of to their secure rights legal redress as people at some living time, with as HIV, shown only in 28% (33/117). Sixteen of respondents had attempted to secure legal redress at some time, as shown in Table 12. Sixteen respondents percent (17/109) had attempted of respondents to secure had legal tried redress to get government at some time, employee as shown involved. Overall,. Sixteen there percent (17/109) of respondents had tried to get government employee involved. Overall, there percent were significant (17/109) variations of respondents (18 and had 82 tried percent to get government respectively) employee between involved. females and Overall, males there in were significant variations (18 and 82 percent respectively) between females and males in were attempting significant to secure variations legal redress (18 and for the 82 experience percent respectively) of stigma. between females and males in attempting to secure legal redress for the experience of stigma. attempting to secure legal redress for the experience of stigma. Table 13: Attempts to get redress for abuse of rights by gender Results Number Legal redress The matter has been dealt with 15 The matter is still in the process of being dealt 3 with Nothing happened 12 Total 30 Tried to get government employee to take action The matter has been dealt with 8 The matter is still in the process of being dealt 2 with Nothing happened 1 Total 11 Tried to get a local/national politician to take action The matter has been dealt with 2 The matter is still in the process of being dealt 2 with Nothing happened 1 The Total results of attempts to secure legal redress or state action for rights 5 violations are presented in The results. About of attempts half (15/30) to secure of those legal that redress had sought or state legal action action for felt rights that violations the matter are had presented been dealt in The results of attempts to secure legal redress or state action for rights violations are presented in with, 10%. About (3/30) half were (15/30) still going of those through that the had legal sought process legal while action felt 40% that (12/30) the matter felt that had nothing been dealt had Table 13. About half (15/30) of those that had sought legal action felt that the matter had been dealt happened. with, 10% Females (3/30) were were still more going successful through in the securing legal process legal redress, while 40% 57%, (12/30) (13/23), felt compared that nothing to males had with, 10% (3/30) were still going through the legal process while 40% (12/30) felt that nothing had 29%, happened. (2/7). Females On the were other more hand successful males were in securing less successful legal redress, in getting 57%, government (13/23), compared employees to males and happened. Females were more successful in securing legal redress, 57%, (13/23), compared to males politicians 29%, (2/7). to take On the action other on their hand behalf males than were their less counterparts. successful in getting government employees and 29%, (2/7). On the other hand males were less successful in getting government employees and politicians to take action on their behalf than their counterparts. politicians to take action on their behalf than their counterparts. For those respondents who said that they did not try to get legal redress for violations of their rights, For most those of them respondents felt intimidated who said or scared that they to take did action not try 50% to get and legal 24% redress of them for said violations they had of no their confidence rights, For those respondents who said that they did not try to get legal redress for violations of their rights, that most the of them outcome felt intimidated would be successful. or scared to There take was action variation 50% and between 24% of them females said and they males had no across confidence all the most of them felt intimidated or scared to take action 50% and 24% of them said they had no confidence reasons that the stated outcome (see would Figure be 14). successful. There was variation between females and males across all the that the outcome would be successful. There was variation between females and males across all the Figure 14: Reasons for not attempting to get legal redress by gender reasons stated (see ). STIGMA INDEX SURVEY REPORT BOTSWANA 24 Page 33

31 For those respondents who said that they did not try to get legal redress for violations of their rights, most of them felt intimidated or scared to take action 50% and 24% of them said they had no confidence that the outcome would be successful. There was variation between females and males across all the reasons stated (see ). Figure 14: Reasons for not attempting to get legal redress by gender Page Effecting change In this section on effecting change, respondents were asked about the actions taken for change or taken to resolve an issue of stigma and discrimination. The PLHIV index shows that 15% (181/1178) of the respondents said that they had confronted, challenged or educated someone who is stigmatizing or discriminating them. The study also found that a higher proportion of female respondents 16% (136/857) tried to challenge those people who were stigmatizing them than males 14% (45/321) respondents. Figure 15: Knowledge that organizations or groups could help if one experiences stigma or discrimination (n=1180) Yes 27% No 73% With regards to awareness of organisations or groups that PLHIV can go for help when they experienced stigma and discriminations, over a quarter 27% (319/1180) said they knew where to seek help. The majority of respondents knew about PLHIV support groups while only a few knew about international non- governmental organizations STIGMA INDEX SURVEY REPORT BOTSWANA 25 Page 34

32 stigma and discriminations, over a quarter 27% (319/1180) said they knew where to seek help. The majority of respondents knew about PLHIV support groups while only a few knew about international non- governmental organizations Figure 16: Other organizations known by the respondents (n=27) Page 34 Despite the fact that most of the respondents were aware of these HIV-related organisations, majority of them (89%) had never sought help from any of these organisations to resolve the issue of stigma and discrimination. For those respondents who had ever sought help, most of them said that they experienced internalised stigma such as low self-esteem, felt guilty or ashamed, being harassed, mistreated or being gossip about and so on. When asked if they tried to resolve issues of stigma and discrimination on their own or with assistance from other, the majority 91% (1072/1181) of respondents said no while nearly 10% affirmed. a Figure 17: Involvement in PLHIV programmes and activities (n=1177) show that 87% of the respondents did not belong to PLHIV support groups. On the other hand Figure 11% 17 (129/1177) show that 87% said of that the they respondents were involved did not in programme/projects belong to PLHIV support that provided groups. On assistance the other to PLHIV. hand 11% In addition, (129/1177) 4% said (47/1177) that they were were involved involved efforts in programme/projects to develop legislation, that provided policies or assistance guidelines to related PLHIV. In to HIV. addition, 4% (47/1177) were involved in efforts to develop legislation, policies or guidelines related to HIV. 3.7 Providing support When respondents were asked about whether they had supported other PLHIV in the past year preceding When respondents the study, were it was asked found about that 76%, whether (893/1180) they had of supported the respondents other had PLHIV provided in the support past year to preceding the study, it was found that 76%, (893/1180) of the respondents had provided support to STIGMA INDEX SURVEY REPORT BOTSWANA 26 Page 35 Page 35

33 their peers. In terms of the types of support provided, 70% (845/1213) said they gave emotional support such as counseling, sharing personal stories and experiences. About one third 31% (370/1213) of the respondents said they referred other people with HIV to related services. In addition 17% (201/1213) said they provided physical support for other people with HIV including money or food or doing errand for them (see Table 14). Table 14: PLHIV`s support to other PLHIV Types of support Female Male Total Emotional support( counselling, sharing personal stories) 623 (71%) 222 (67%) 845 (70%) Total Physical support (providing money or food etc) 142 (16%) 59 (18%) 201 (17%) Total Referral to others 273 (31%) 97 (29%) 370 (31%) Total When asked to provide perceptions of their power to influence decision in policies and programmes, most respondents (659 responses) said they did not have any power to influence decision in the project or matters related to PLHIV, including legal rights, local or national government policies that affect PLHIV, local or national projects that benefits PLHIV, only 98 response were obtained influencing International agreements/treaties. When respondents were asked about their recommendations to organisations for PLHIV, a total of 35% (411/1213) of them felt that these organisations were to address stigma and discrimination and to raise the awareness and knowledge to the public about AIDS (Figure 18 ). 23%,(265/1231) said that these organisations should educate people living with HIV about living with the virus including treatment literacy, 20%, (239/1213) said that the organizations should provide various types of support to PLHIV, including emotional, physical and referral support, and 9% (102/1213) felt that there was a need for more advocacy for the rights of all people living with HIV and marginalized groups (3%, 39/1213). STIGMA INDEX SURVEY REPORT BOTSWANA 27 Page 36

34 organisations should educate people living with HIV about living with the virus including treatment literacy, 20%, (239/1213) said that the organizations should provide various types of support to PLHIV, including emotional, physical and referral support, and 9% (102/1213) felt that there was a need for more advocacy for the rights of all people living with HIV and marginalized groups (3%, 39/1213). Figure 18: Recommendations to PLHIV organisations from respondents Page Experience of testing, disclosure, treatment and having children This chapter has four sections. The first section deals with the decision to test and procedure for HIV This testing chapter adapted has by four the sections. respondents The interviewed. first section deals The second with the section decision deals to with test the and disclosure procedure status for HIV of testing the PLHIV adapted to various by the categories respondents of people interviewed. and the The reaction second of section these people deals with when the they disclosure learnt about status the of the HIV PLHIV status to of various the respondents. categories Issues of people related and the to confidentiality reaction of these were people also when assessed they during learnt the about study. the Access HIV status to treatment of the respondents. including ART Issues is discussed related to in confidentiality the third section, were and also finally, assessed issues during about the having study. children Access to are treatment presented. including ART is discussed in the third section, and finally, issues about having children are presented Testing and diagnosis Figure 19 shows the reasons people were tested for HIV. Most of the respondents reported that they shows the reasons people were tested for HIV. Most of the resp were tested because they just wanted to know their status, therefore it was not suprising that more were tested because they just wanted to know their status, therefore it w than nine in ten (94%) said that it was their own decision to get tested (Table 15). 21% were tested than nine in ten (94%) said that it was their own decision to get tested because they were referred due to suspected HIV-related symptoms, and close to one fifth (18%) of the because they were referred due to suspected HIV-related symptoms, and clo respondents got tested due to illness/death of husband/wife/partner/family member. respondents got tested due to illness/death of husband/wife/partner/family Figure 19: Reasons respondents were tested for HIV STIGMA INDEX SURVEY REPORT BOTSWANA 28

35 Table 15 shows the conditions under which people were tested for HIV. Males, 96% (305/1213), were more likely to feel that they had taken the decision to be tested alone without pressure than were females (94%, 801/1213), whilst 1% (6/1213) of the respondents said they were tested without their knowledge. Table 15: The factors influencing decision to test by gender Decision of testing Females Males Total Yes I took the decision myself to be tested 801(94%) 305(95%) 1106(94%) I took the decision to be tested but it was pressure from others 18 (2%) 7(2%) 25(2%) I was made to take an HIV test (coercion) 32(4%) 7(2%) 39(3%) I was tested without my knowledge, I only found out after the test had been done 5(1%) 1(0%) 6(1%) Total Regarding the respondents`experiences with pre- and post Test 89% (1046/1176) of the respondents Regarding the respondents`experiences with pre- and post Test 89% (1046/1176) of the respondents reported that they received both pre and post HIV test counseling while only 4% (43/1176) did not reported that they received both pre and post HIV test counseling while only 4% (43/1176) did not receive any counseling when they took an HIV test. receive any counseling when they took an HIV test Disclosure and confidentiality Disclosure of HIV positive test results is a direct measure of the degree and gravity of HIV related Disclosure of HIV positive test results is a direct measure of the degree and gravity of HIV related stigma. To map and measure this among PLHIV, the study asked respondents to reveal how people in stigma. To map and measure this among PLHIV, the study asked respondents to reveal how people in the family and community became aware of their HIV positive status. The Botswana study found that the family and community became aware of their HIV positive status. The Botswana study found that 94% (915/1213) of the repondents reported that they had disclosed their HIV test results to the 94% (915/1213) of the repondents reported that they had disclosed their HIV test results to the family(see below). The study also found that disclosure to health workes was higher among family(see Table 16 below). The study also found that disclosure to health workes was higher among study participants. Findings from the same table depicts non disclosure of HIV positive status to media (98%) injection drug partners (88%), teachers and community leaders. Table 16: Disclosure of HIV status Part of people I told them Someone else told Someone else told them They don't know my status them with my consent without my consent Your husband/wife/partner 94% 2% 1% 3% Adult family members 89% 3% 2% 6% Children in your family 76% 3% 2% 20% Your friends/neighbours 60% 2% 5% 33% Other people living with HIV 75% 5% 9% 11% STIGMA INDEX SURVEY REPORT BOTSWANA 29 Page 38

36 Co-workers 45% 2% 5% 48% Your employer(s) 46% 1% 2% 51% Your clients 19% 1% 1% 79% Injecting drug Partners 0% 6% 6% 88% Religious leaders 40% 1% 2% 58% Community leaders 13% 3% 1% 83% Health care workers 86% 6% 5% 4% Social workers/counselors 46% 5% 1% 48% Teachers 12% 1% 2% 85% Government officials 38% 7% 6% 48% The Media 2% 0% 0% 98% Most (ranging from 93% to 50%) respondents indicated that people were supportive the first time they knew about the respondents positive HIV status. Health workers and religous leaders were reported by 93% and 91% resspectifully as supportive. See Table 17 below. Table 17: People`s reactions upon learning about positive HIV status Part of people Discriminate No different Supportive Your husband/wife/partner 5% 7% 88% Adult family members 6% 8% 85% Children in your family 1% 11% 88% Your friends/neighbours 5% 12% 84% Other people living with HIV 1% 12% 87% Co-workers 6% 15% 79% Your employer(s) 10% 16% 74% Your clients 8% 15% 77% Injecting drug partners 50% 0% 50% Religious leaders 2% 7% 91% Community leaders 3% 12% 85% Health care workers 1% 7% 93% Social workers/counselors 2% 14% 84% Teachers 8% 26% 67% Government officials 1% 10% 89% The Media 27% 9% 64% STIGMA INDEX SURVEY REPORT BOTSWANA 30 Page 39

37 The study revealed that many PLHIV had experienced direct pressure to disclose to other people. Table 18 below shows that an equal percentatge (98%) of respondents reported pressure to disclose their HIV status from both PLHIV and non PLHIV. Table 18: Experience of pressure to disclose HIV status by gender Experience Female Male Total Have you ever felt pressure from other PLHIV to 841(98%) 317(99%) 1158(98%) disclose your status Total Have you ever felt pressure from other people not 842(98%) 316(99%) 1158(98%) living with HIV to disclose your status Total Has a healthcare professional ever told other 22(3%) 7(2%) 29(2%) people about your status without your consent Total When asked if a health care professional has ever told other people about their status without their consent, When asked only if 2% a (29/1176) health care affirmed professional to the has statement. ever told other people about their status without their consent, only 2% (29/1176) affirmed to the statement Treatment In order to understand their perception about their health status, the studyed PLHIV were asked to rate In their order current to understand health condition their perception as excellent, about very their good, health good, status, fair the studyed and poor/bad. PLHIV were asked to rate their As shown current in Figure health condition 20 below, as more excellent, than half very of the good, respondents good, fair perceived and poor/bad. that they were in excellent As or very shown good in health. More below, than more 98 % than (1150/1173) half of the respondents of the PLHIV perceived perceived that their they health were in in the excellent range of or fair very to excellent. good health. This More may than be explained 98 % (1150/1173) by the fact of that the the PLHIV great perceived majority their 95% health (1101/1163) in the range of the of PLHIV were adhereing to ART which likely enabled them feel well. There was no significant variation between male and female respondents in the perception about their health status. STIGMA INDEX SURVEY REPORT BOTSWANA 31

38 fair to excellent. This may be explained by the fact that the great majority 95% (1101/1163) of the PLHIV were adhereing to ART which likely enabled them feel well. There was no significant variation between male and female respondents in the perception about their health status. Figure 20: Perceived health status by gender (n=1173) Page 40 Table 19: Access and usage of ART and medication for opportunistic Infections Access and usage Female Male Total Currently taking ART 801 (95%) 300 (94%) 1101 (95%) Total Have access to ART, even if not currently taking it (92%) (94%) (86%) Total Currently taking medications to prevent or treat opportunistic infections 121 (14%) 36 (11%) 157 (13%) Total Have access to medications for opportunistic infections, even if not currently taking it 486 (58%) 180 (56%) 666 (57%) Total Almost all 95% (1101/1163) of respondents for the Botswana stigma index were currently on ARV treatment while only 13% (157/1163) were on medication for opportunistic infections. Further, of those not on treatment, more than half of respondents 57% (666/1163) reported they could access treatment for opportunistic infections when they needed it Having children Only 17% (197/1172) had children living with the HIV. When asked if they had recieved counselling about their reproductive options, more than half 56% (652/1177) said yes while 12% reported they had received advice from health care professional not to have children. The study found that 2% of the respondents had been coerced into being sterilized since being diagnosed to be HIV positive. In addition, 18% indicated that their abilty to access ARV was conditional on the use of certain forms of contraceptives as depicted by Tables below. STIGMA INDEX SURVEY REPORT BOTSWANA 32 Page 41

39 Table 20: Respondents who have a HIV-positive child/children (n=1172) Responses Female Male Total Yes 171 (20%) 26 (8%) 197 (17%) No 681 (80%) 294 (92%) 975 (83%) Table 21: Number who received counselling about RH options since being diagnosed HIV+ (n=1171) Responses Female Male Total Yes 487 (57%) 164 (51%) 651 (56%) No 365 (43%) 156 (49%) 521 (44%) Table 22: Number advised by health care professional not to have a child (n=1171) Responses Female Male Total Yes 107 (13%) 30 (9%) 137 (12%) No 744 (87%) 290 (91%) 1034 (88%) Table 23: Number coerced by health care professional into sterilisation (n=1171) Responses Female Male Total Yes 28 (3%) 1 (0%) 29 (2%) No 823 (97%) 319 (100%) 1142 (98%) Table 24: ART access dependent of form(s) of contraceptive (n=944) Responses Female Male Total Yes 162 (23%) 45 (19%) 207 (22%) No 544 (77%) 193 (81%) 737 (78%) Figure 21: Access to ARV prophylaxis for PMTCT during pregnancy (total number of pregnant Figure 21: Access to ARV prophylaxis for PMTCT during pregnancy (total number of pregnant women interviewed= 839) During pregnancy, while HIV positive, 46% (386/839) of respondents received ARV treatment, while 7% During (59/839) pregnancy, were not while aware HIV of positive, PMTCT 46% and 7% (386/839) reported of they respondents did not have received access ARV to PMTCT treatment, services. while 7% (59/839) were not aware of PMTCT and 7% reported they did not have access to PMTCT services. Page 42 STIGMA INDEX SURVEY REPORT BOTSWANA 33 Page 42