Research 1: Understanding HIV and AIDS stigma and discrimination (2005) by The Power Is In People

Research

Number One

Understanding HIV and AIDS stigma and discrimination at a community level: Perspectives from rural KwaZulu-Natal

Report Prepared by: Lilian Mboyi, Henri Carrara, Gethwana Makhaye, Janet Frohlich and Quarraisha Abdool Karim

JOHAP The Joint Oxfam HIV/AIDS Program in South Africa seeks to strengthen the civil society response to HIV/AIDS through supporting integrated communitybased services for HIV prevention and care, including a focus on gender and sexuality and the rights of people living with, and affected by, HIV/AIDS.

Deutschland ISBN 1-875870-52-0

Ireland

A series of reports on the Joint Oxfam HIV/AIDS Program (JOHAP) 2005

Contents Who is Caprisa

Who is Caprisa?

The Centre for the AIDS Program of Research in South Africa was founded by the Universities of Natal, Cape Town, and the Western Cape, the Trustees of Columbia University in the City of New York, and the National Institute for Communicable Diseases.

Summary

Study goal and objectives

Background

CAPRISAâ&#x20AC;&#x2122;s goal is to develop and undertake globally relevant and locally responsive research that contributes to understanding HIV pathogenesis and epidemiology as well as HIV and AIDS treatment and prevention. Caprisa also hopes to build local research infrastructure through cores of expertise and to provide training through research fellowships tenable both in South Africa, the United States of America and elsewhere.

Acknowledgement Copyright of all photographic images used in this publication remains that of Clive Gray, who has kindly provided Oxfam Australia with permission to use the images. The photos in this publication were taken in 2004 during a visit to the Vulindela community. This community is where CAPRISAâ&#x20AC;&#x2122;s research into stigma and discrimination took place. The photos represent various aspects of community life.

B.1. HIV Infection in South Africa

B.2. Stigma and Discrimination

B.3. The Vulindlela Community

B.3.1. Community Participation in Research

B.3.2.Caprisa Research Facility in Vulindlela

B.3.3. Stigma and Discrimination in Vulindlela

Study design

C.1

Study Setting

Ethical considerations

D.1

Ethical Review

D.2

Informed Consent

D.3

Confidentiality

Results

Discussion

Conclusion

Study Significance / Conclusion

Acknowledgements

Data Dissemination

Study Team

Acknowledgements

References

Appendix 1

Contents Who is Caprisa

Who is Caprisa?

Summary

Study goal and objectives

Background

B.1. HIV Infection in South Africa

B.2. Stigma and Discrimination

B.3. The Vulindlela Community

B.3.1. Community Participation in Research

B.3.2.Caprisa Research Facility in Vulindlela

B.3.3. Stigma and Discrimination in Vulindlela

Study design

C.1

Study Setting

Ethical considerations

D.1

Ethical Review

D.2

Informed Consent

D.3

Confidentiality

Results

Discussion

Conclusion

Study Significance / Conclusion

Acknowledgements

Data Dissemination

Study Team

Acknowledgements

References

Appendix 1

Summary The primary aim of this study was to identify factors contributing to HIV and AIDS related stigma and discrimination within a rural community in KwaZulu-Natal. This cross-sectional study was undertaken in the rural district of Vulindlela in the KwaZulu-Natal Midlands between November 2003 to January 2005 using both quantitative and qualitative methods.

A total of 594 structured interviews, and nine focus group discussions comprising 39 women and 42 men were conducted. Both in the quantitative and qualitative interviews attitudes to people living with HIV and AIDS were generally supportive and the immediate family (spouse, parents, and siblings) was seen almost uniformly as an important source of support.

The quantitative data was collected from February 2004 to July 2004 using a structured questionnaire that included open and closed-ended questions to assess knowledge and perceptions of stigma and discrimination. Interviews were conducted by eight trained fieldworkers.

Additional sources of support in this community were the Community Health Workers. Concerns were expressed about attitudes of groups outside the home such as neighbours and faith based organisations. Their fear and concerns stemmed from the perceived judgmental and moralistic attitudes of these groups that would result in being labeled and isolated. Their worst fear was being laughed at. Trust was an important issue related to, and influencing the decision to disclose or not to disclose HIV status to others. Also of concern was to what extent fear of stigma and discrimination was impacting on both prevention and treatment. There was a common notion that if one half of the couple was infected then the other must be too and therefore there was no need to practice safer sex. Fear and embarrassment had many AIDS patients suffer agonizingly alone at home instead of seeking available treatment.

The qualitative data was collected using focus group discussions conducted between November 2004 and January 2005. A semi-structured interview schedule was used firstly to validate the quantitative survey and included perspectives of underrepresented groups in the survey, and secondly to interview persons utilising voluntary counselling and testing services (VCT) and/or participating in an HIV treatment project.

There was a common notion that if one half of the couple was infected then the other must be too and therefore there was no need to practice safer sex. Fear and embarrassment had many AIDS patients suffer agonisingly alone at home instead of seeking available treatment.

A. Study goal and objectives One of the most striking findings in this study was the substantial shift in the community in acknowledging AIDS and AIDS related deaths. Whilst there was some confusion between HIV infection and AIDS, participants talked about AIDS and “death from AIDS” and not “a new disease” or “the new disease killing our young”, as was the case about two years ago at the start of our research in this community. Of note is that about a third were aware of their HIV status and about half of those who were unaware of their status were willing to have an HIV test. The richness and insights shared with the research team especially during the focus group discussions reflects an impressive depth of understanding of the evolving epidemic in this community and the reflection and thought that community members are giving to this major threat to them and their families.

The primary aim of this study was to identify factors contributing to HIV and AIDS related stigma and discrimination within a rural community in KwaZulu-Natal. The specific objectives were: 1. To determine knowledge of attitudes and behaviour towards people living with HIV and AIDS in this community. 2. To identify sources of support for people living with AIDS in the household and community. 3. To ascertain awareness of, and response to AIDS related deaths in Vulindlela. 4. To assess participant’s willingness to, and reasons for, taking an HIV test.

An emerging concern is the stigma being borne by the survivors in families and households where an AIDS-related death has occurred. This study has been able to establish who in this community is willing to talk about stigma and discrimination; where they are willing to have discussions; and what they are prepared to discuss; and provides preliminary insights into this complex phenomenon.

Several strong gender themes emerged in relation to expectations men have from their wives in terms of; provision of care; reproductive choices HIV infected women should have; and who should be providing care to persons with AIDS. Of note was the willingness of the male soccer players in this community to care for patients with AIDS.

B. Background B1. HIV Infection in South Africa South Africa is at the epicentre of the global pandemic and contributes about 10% of the global burden of infection while being home to less than 1% of the global population (UNAIDS, 2004). Despite the relatively late introduction of HIV in the general population, HIV has spread rapidly with the national prevalence of HIV infection among antenatal clinic attendees in South Africa increasing from 0.76% in 1990 to 27.9% in 2003 (Department of Health, Republic of South Africa, 2003).

At a public level, while there is some report of increases in AIDS-related mortality, there is still widespread denial of the epidemic and its impact. About 5.3 million people are living with HIV and AIDS in South Africa (Department of Health, Republic of South Africa, 2003), the majority of whom are unaware of their HIV status. There is a gradient of infection from east to west coast with the highest prevalence of infection in the province of KwaZulu-Natal (37.5 %) compared to 13.1% in the Western Cape (Department of Health, 2003). As in some other parts of the world where heterosexual transmission of HIV is dominant, women carry a greater burden of infection – about three fold greater than that compared to men (Abdool Karim Q and Abdool Karim SS 1999).

Young women between the ages of 15 to 25 years have the highest prevalence and rates of new infection (UNAIDS, 2004), estimated to be as high as 10% per annum in some communities in KwaZulu-Natal (Gouws et al., 2002). As the epidemic matures, increasing morbidity is impacting health service provision (Colvin et al 2001) and the number of tuberculosis cases have risen sharply (Glynn, 1998) overturning gains made in the early 1990’s following the introduction of Directly Observed Treatment Strategy Short-course (DOTS). The recently completed Demographic and Health survey (Bradshaw et al., 2004) demonstrates a four-fold rise in mortality in women in the economically active and reproductive age groups. Despite the high levels of knowledge of HIV infection in terms of modes of transmission and methods of prevention, only a small proportion are aware of their HIV status and fewer disclose their status. At a public level, while there is some report of increases in AIDS-related mortality, there is still widespread denial of the epidemic and its impact. Part of the denial is fuelled by perceptions of, and fear of discriminatory practices towards people with AIDS such as experience of violence, loss of jobs, security and even death. As programs to reduce mother-to-child transmission are established and programs for HAART (Highly Active Antiretroviral Treatment) provision start to be developed, there will be an increase in the provision of VCT services resulting in increasing numbers of HIV infected individuals becoming aware of their HIV status and

the need of ongoing support from family and community. With increasing prevention and treatment options becoming available, in some settings the idea of undertaking routine HIV testing at health care facilities among all participants utilising the health facilities is gaining increasing attention. This underscores the need to better understand issues relating to societal level stigma and discrimination to inform the implementation of these interventions and programs.

AIDS stigma is universal, but its form varies from one country to another, and the specific groups targeted for AIDS stigma vary considerably...Whatever its form, AIDS stigma inflicts suffering on people and interferes with attempts to fight the AIDS epidemic.

B2. Stigma and Discrimination Stigma is defined as the labeling or “othering” of persons or a group of people (UNAIDS, 2000) and usually reinforces existing prejudices (Brown et al., 2003). It reinforces existing social inequalities such as gender, wealth and sexuality and is closely linked to power and domination that produces and reproduces relations of power and control (Parker and Aggleton, 2003; France and Anderson 2002; Valdiserri, 2002).

Discrimination is a response to stigma and manifests in tangible actions such as segregation, loss of jobs, and loss of rights. This may occur at an individual, community or societal level. AIDS stigma is expressed around the world in a variety of ways, including: ostracism, rejection, and avoidance of people with AIDS (PWAs), discrimination against PWAs, violence against persons who are perceived to have AIDS or to be infected with HIV, and quarantine of persons with HIV.

AIDS stigma is universal, but its form varies from one country to another, and the specific groups targeted for AIDS stigma vary considerably and is closely linked to perceptions of morally acceptable behaviours and practices such as homosexuality, injecting drug use, sex outside of marriage, and sex work. Whatever its form, AIDS stigma inflicts suffering on people and interferes with attempts to fight the AIDS epidemic.

To challenge stigma and discrimination one needs to first understand the phenomenon. To reduce its manifestation requires changes in cultural values and social attitudes. For communities to resist and take charge requires awareness raising, empowerment and community mobilisation enabling them to confront stigma and discrimination in relation to AIDS but also potentially to other inequalities. For national, regional, and local structures to be mobilised to enhance our response to the epidemic there needs to be visibility and openness about HIV and AIDS. Yet, people are afraid to speak openly about their HIV status which in turn leads to the denial that the epidemic exists. AIDSrelated stigma impacts negatively on several aspects of health care including; prevention efforts (Strike, 2004), health seeking behaviours among those who suspect they may already be infected with HIV resulting in increased debilitation and morbidity as a result of delaying seeking health services during illness (Carr and Gramling, 2004; MacLean, 2004; Hutchinson et al., 2004); and the willingness of people to participate in prevention activities (Yang et al., 2004). Stigma and discrimination remain key barriers to accessing voluntary counselling and testing and HIV and AIDS prevention,

care and support services (Furber, 2004; MacLean 2004; Flowers et al., 2003). This impacts prevention decisions by individuals not to practice safer sex, resulting in the continued spread of HIV and precludes sick patients from seeking treatment which is becoming increasingly available in resource constrained settings. In summary, stigma causes discrimination that leads to violations of human rights that serves to legitimise stigma and perpetuation of the cycle (Parker and Aggleton, 2003). Whilst most countries have a legislative framework through their constitution to prevent stigma and discrimination they remain dead letters of the law unless it is linked to and supported by values, expectations and actions of society. Communities are key to creating an environment that enables self-understanding as the basis for social action and influences how individuals and groups respond to, and process stigma (Mann et al., 1992). To challenge stigma and discrimination one needs to first understand the phenomenon. To reduce its manifestation requires changes in cultural values and social attitudes. For communities to resist and take charge requires awareness raising, empowerment and community mobilisation enabling them to confront stigma and discrimination in relation to AIDS but also potentially to other inequalities. Providing education to address misconceptions of HIV transmission (Kalichman and Simbayi, 2004; Castle 2004; Letamo, 2003) and increasing awareness of HIV and AIDS (Yang et al., 2004) are two of the most widely recommended ways to overcome AIDSrelated stigma.

Experience in developing countries also suggests that greater treatment access will help alleviate HIV-related stigma and provide incentives for individuals to learn their HIV status, thus strengthening prevention efforts (Lange et al., 2004). In an example from Haiti, the provision of high quality HIV care was shown to be a useful way of overcoming the treatment access barriers associated with stigma (Castro and Farmer, 2005). This study undertaken in Vulindlela is a first step in this process viz. to understand the phenomenon as a precursor to the development of interventions to reduce stigma and discrimination and thereby enhancing our HIV and AIDS prevention, care and support programs.

B.3. The Vulindlela community Vulindlela, is a rural community with approximately 400,000 residents in the KwaZulu-Natal midlands, about 150 km west of Durban. Since 1996 there have been several initiatives to improve the living conditions in the area through development of roads and other services. Many residents have access to water and electricity. In some instances, due to traditional extended family living practices several households may be clustered together and make up a homestead. Vulindlela is under the authority of two tribal chiefs, and is administered through both tribal and democratically elected structures. There are several organisations in the area representing a variety of civic interests such as youth, women, religion, politics, and housing. Employment opportunities exist within Vulindlela through extensive forestry projects. In addition, men seek employment in Pietermaritzburg, Howick or neighbouring cities. These men usually live in the city during the week and return home over the week-end. Women are also employed by the forestry projects and engage in communal income generating activities such as gardening and sewing but to a more limited extent than men. There are 12 primary schools and four high schools in the area and school attendance is high for both boys and girls. Primary Health Care services are provided through seven clinics in the district. These are nurse managed services that provide care for antenatal, family planning, childhood immunization, sexually transmitted infection, minor ailments,

tuberculosis and VCT. The closest referral hospitals are Greyâ&#x20AC;&#x2122;s and Edendale and they are about twenty minutes away. B.3.1. Community Participation in Research The presence of the research team in this community was by invitation by two of the five traditional chiefs, Nkosi Sondelani Zondi and Nkosi Nsikayezwe Zondi, motivated by their growing concern about the unfolding AIDS epidemic in Vulindlela and to complement their current efforts in the community. The community-based organisations are also actively involved in addressing the challenges being posed by the HIV epidemic to their constituencies. The partnership between the community and researchers is growing. Several consultative meetings have been held with key stakeholders in this community and feedback has been provided on the research that has been completed to date. A formal mechanism for interacting with key stakeholders including health service providers, traditional leaders and community structures is being established in the form of a Community Advisory Board. B.3.2. CAPRISA Research Facility in Vulindlela The CAPRISA research facility in Vulindlela adjoins the Mafakathini Primary Health Care Clinic with a shared entrance, security and waiting area. The research facility was completed in mid- 2003 and has four clinical examination rooms with offices for nurses/clinicians, three counselling rooms, a training/meeting room, a laboratory, a specimen preparation room, four offices, a dispensary, archives/record rooms, and a reception area. It is equipped to undertake studies at good clinical practice (GCP) standards. It has Internet connectivity and full Information Technology (IT) support

from the University of KwaZulu Natal, Pietermaritzburg. Transport systems to get specimens from Vulindlela to the laboratories in Durban are in place. These facilities are equipped with computers, telephones and a fax machine. B.3.3. Stigma and discrimination in Vulindlela As part of the community preparatory work for the proposed research, a number of group discussions took place in 2003 with different groups in Vulindlela around HIV and AIDS. While these groups report on high levels of awareness and knowledge about HIV and AIDS including AIDS-related mortality, there is no-one who has publicly disclosed their HIV status or is willing to do so, and uptake of the VCT services at the PHC clinics remain low. The leadership in the community expressed their concern about the increasing mortality particularly of young men and women and drew attention to the numerous funeral tents visible in increasing numbers over weekends. Fear of stigma and discrimination has been raised as a major barrier to dealing with the epidemic in this community.

C. Study design C.1 Study Setting This study was conducted in the Inadi Ward, a rural community on the western border of Vulindlela district in the KwaZulu-Natal Midlands, South Africa. The key health centre, the Mafakathini Primary Health Care (PHC) clinic, has an average of 1500 clinic attendees a month primarily for antenatal, family planning, childhood immunisation, and under-five child health services. In addition to the four full-time nursing staff, there are five Community Health Workers (CHWs) and two AIDS counsellors. The CHWs serve as a critical link between the health services and the community. Each CHW is responsible for about 150 households in their area that they visit once a month or more frequently if required. In addition to enquiring about the health status of members of each household, they encourage clinic utilisation during pregnancy, promote childhood immunisation, support adherence to TB therapy and provide general health education on infectious diseases such as cholera and HIV and AIDS. The maturing HIV epidemic has resulted in a new and major area of responsibility in terms of providing home-based care for ill patients with advancing HIV disease and palliative care for the terminally ill.

The PHC clinics are linked by ambulance to the regional referral hospitals, Greyâ&#x20AC;&#x2122;s Hospital (about 30 minutes away), and Edendale Hospital (about 20 minutes away). There are approximately 60 organisations in the area representing a variety of civic interests such as youth, women, religion, politics, and housing. Several non-governmental organisations are currently providing HIV prevention and home-based care services to this community. Phase 1: Quantitative Survey Study Population Precise data on population size, demographic characteristics of residents and number of households are not available. Based on the most recent SA census data it is estimated that there are about 400 000 residents and about 61 500 households in this district. For the purposes of this survey we restricted our activities to the Inadi ward which is a sub-section of the Vulindlela district, as this geographical area is closest to the CAPRISA Vulindlela Research Facility and would be the priority catchment area for proposed research to be undertaken by CAPRISA. As there are no clearly identifiable street addresses, the Department of Health statistics used for health planning purposes were used to estimate the number of households to be included in the survey. These statistics indicated that there are about 1800 households and approximately 12 000 people living in this ward. Establishing a sampling frame Recent aerial maps (2001) of the area were utilised to demarcate the boundaries of the area to be included in this survey. These boundaries were confirmed by driving

through the demarcated areas on the map with the fieldworkers and then creating three sub-sections for conducting the survey in a systematic way. The eight fieldworkers who were responsible for data collection visited every household in each sub-section and generated a more precise map of the area (marking every household) and also recorded the number of residents per household. They established that there were 1686 households in this section of the Vulindlela district with a total number of 10 986 residents. They also used this opportunity to inform households of the proposed survey and its purpose, as well as the possibility that they may or may not be included in the survey depending on the final sampling method to be used.

The respondent questionnaire was administered to one third of the households in this ward. The fieldworkers randomly selected one consenting household member, either male or female between the ages of 18 and 50 years to administer the respondent questionnaire. If there was no one in the household over the age of 18 years or if the head of household refused to participate this was noted and the next household on the list was visited.

Study Procedures This cross-sectional study was conducted from February 2004 to January 2005. Data collection was undertaken from February to July 2004 using a standardised, piloted questionnaire that was administered by trained interviewers. The questionnaire included closed and open ended questions and included items on socio-demograph; awareness of persons with AIDS and AIDS related deaths; knowledge and attitudes to people living with AIDS; knowledge of and response to AIDS-related deaths, perception of HIV risk; willingness to have an HIV test and reasons for wanting to have/not have an HIV test; and identification of existing support structures and factors that would influence disclosure of HIV status. Initially, 14 community health workers who had a thorough knowledge and understanding of the Inadi Tribal area were trained over a fourteen day period that included role-playing and piloting of the instruments. Eight of these fieldworkers were selected for the implementation of this study. The fieldworkers conducted the interviews at the household in pairs and visited the selected households in two groups of four each. Each team of four fieldworkers had a leader who took responsibility for resolving any queries in the field, recording the households visited from the sampling frame and checked the daily visit logs completed by the fieldworkers and submitting weekly progress reports to the fieldwork supervisor. The fieldworker introduced the study to the head of the household or most senior household member present. After providing written informed consent the interview was

conducted in privacy and in the language preferred by the interviewee (English or Zulu). The fieldworker then introduced the study to all household members present and one member was randomly selected from those eligible members of the household willing to participate in the study. On completion of the interview, the fieldworkers corrected any misconceptions that may have emanated during the interview and answered any questions the household head, respondent and or other members of the household may have had. An information sheet that lists HIV and AIDS resources for information, VCT services and health services was left with the head of the household or most senior member of the household in each household visited. In an attempt to prevent a skewed sample, the fieldworkers visited the households at different times and on different days of the week. As most of interviews were conducted in the week, the sample may be more biased towards unemployed men and women. To ensure that perceptions of

employed men and women are included 10% of interviews were conducted over weekends.

The questionnaire included closed and open ended questions and included items on socio-demography; awareness of persons with AIDS and AIDS related deaths; knowledge and attitudes to people living with AIDS; knowledge of and response to AIDS-related deaths; perception of HIV risk; willingness to have an HIV test and reasons for wanting to have/not have an HIV test; identification of existing support structures; and factors that would influence disclosure of HIV status.

Phase II: Qualitative data collection Common themes emerging from the structured interviews were validated during focus-group discussions (FGDs) with key groups within the community including groups that were under-represented during the structured interview phase of the study. All focus group discussions were conducted by research team members. Six focus group discussions using a semi-structured interview schedule were undertaken from November 2004 to December 2004 with groups under-represented in the survey to validate the cross-sectional survey findings. Questions in these focus group discussions included reasons and motivation for testing, sexual practices, disclosure, sources of support and attitudes to HIV and AIDS. Whilst the study was initiated prior to HAART access in the community and in the midst of immense AIDS related denial and stigma and discrimination, the introduction of HAART into this community during the course of this study has made some impact on uptake of VCT and shifted mindsets on how to deal with the epidemic. We used this opportunity to conduct four additional focus group discussions in January 2005 with persons utilising the CAPRISA Research Facility for VCT services who were either infected or not, as well as with a group of patients on HAART to expand our understanding of issues raised in the cross-sectional survey. This also helped us to move away from a hypothetical situation and to get a sense of what the experiences were for those who had made a decision to test or had recently tested positive or negative. Several focus group discussions were held with volunteers utilising the Vulindlela CAPRISA research facilities on:

i. VCT services, or ii. were participants in a HIV prevention trial that enrolls HIV uninfected persons and that requires repeat HIV testing on a quarterly basis, and iii. those who tested positive and are part of a anti-retroviral treatment project. All ten focus group discussions were conducted using three semi-structured interview schedules (Appendix 1) â&#x20AC;&#x201C; one for the 6 FGDs with under-represented groups, the second for the 2 FGDs with participants volunteering for HIV testing at the CAPRISA Research facility and for the 2 FGDs with clients utilising the CAPRISA treatment services. Research team members were responsible for facilitating the discussion and probing issues further with the group as they emerged. Detailed fieldnotes were compiled during the interview and finalised within 2-3 hours of the interview being completed in consultation with other team members as an accurate reflection of the discussion. Finally another member of the team checked the field notes for consistency. The level of consistency between the different groups that participated in the FGDs and the findings of the quantitative component suggests a high degree of reliability of the data.

Content analysis of the field reports was undertaken by three members of the study team and the final analysis was made by the authors after independent scrutiny of the raw data to identify key themes emerging from the group discussions.

employed men and women are included 10% of interviews were conducted over weekends.

D. Ethical considerations

E. Results D.1 Ethical Review Ethics approval for the conduct of this study was obtained from the Ethics and Professional Standards Committee of Nelson R Mandela School of Medicine, Faculty of Health Sciences, University of KwaZulu-Natal. D.2 Informed Consent Written informed consent was obtained from each study participant prior to administering the questionnaire. The informed consent process described the purpose of the study, length of interview and the topics that would be covered during the interview. Consent was sought in the preferred language of interviewee, which was either in English or Zulu. A copy of the signed consent was left with the study participant. D.3 Confidentiality All interviews were conducted in private, and every effort made to protect interviewee privacy and confidentiality to the extent possible. In addition, all studyrelated information was stored securely at the study site with limited access to designated study staff. Data collection forms, and other reports, were identified only by a coded number to maintain participant confidentiality. All databases are secured with password-protected access systems and access to the database was limited to designated study staff. Presentations, conference abstracts or manuscripts emanating from this study are governed by the existing CAPRISA Publications Policies.

E1. Quantitative Cross-sectional Survey

E1.2. Perceptions and attitudes to people living with HIV

E1.1. Socio-demographic characteristics Although initially we planned to interview respondents from 562 households a total of 630 respondent surveys were completed. The difference was as a result of more than one volunteer being interviewed in several households at their request and as the additional interviews were random they have been included in this analysis. During the quality assurance process it was established that 36 interviews were conducted with the incorrect version of the questionnaire and these were excluded from the final analysis. Thus, the total number of respondent interviews included in the analysis was 594. There were six refusals to be interviewed.

E1.2.1. Perceptions of ease of disclosure Although about a third of the participants thought that it was difficult for persons living with HIV to communicate their HIV status; they thought that the ease of speaking to different persons about their HIV status was related to closeness and intimacy of the relationship. For example most respondents indicated that it was easy to talk to their sexual partners and family members but difficult to speak with teachers, work colleagues and neighbors (see Table 1).

In terms of gender breakdown, 60% of the respondents were women (n=378) with an age range of 18 â&#x20AC;&#x201C; 50 years. The male respondents (n=216) ranged in age between 18 and 48 years. The mean age of the women was 25.4 (sd 6.0) and men was 25.1 (sd 6.6). 0.5% of the respondents had university level education, 3% had attended college, 85% high school, 11% primary school and less than 1% had no education. There were no differences in level of education by sex. In terms of occupation, 6% of the women were currently employed, 83% were currently unemployed, 9% were scholars and 2% were pensioners or receiving disability grants. In contrast, 11% of the men were currently employed, 70% were currently unemployed, 18% were scholars and 1% were pensioners or receiving disability grants.

In descending order, perceived ease of speaking about HIV status were; partner (69%), family (61%), traditional leader (28%), church (22%), friend (20%), work colleague (9%), teacher (8%), and neighbour (5%). Conversely, perceived difficulty in speaking with different people about their HIV status was as follows: very

difficult - neighbours (46%), work colleagues (27%), teachers (26%), friends (18%), church (16%), traditional leader (15%), family (6%) and partners (4%). No striking differences by gender were noted, however in general men were more likely to find it easy to talk about their HIV status should they become infected. Slightly more men than women thought it would be easy to talk to family (68% vs 58%). 35% of men would find it easy to talk to traditional leaders compared with 24% of women. Similarly 28% of men thought it would be easy to talk to friends compared with 15% or women. 12% of men thought it would be easy to talk to teachers compared with 6% of women. 12% of men thought it would be easy to talk to work colleagues compared with 7% of women. 7% of men thought it would be easy to talk to neighbours compared with 4% of women.

Table 1: How easy or difficult is it for a person with HIV/AIDS to talk about their status RELATIONSHIP

EASY

DIFFICULT

VERY DIFFICULT

Partner

69% (409)

27% (157)

4% (25)

MISSING* (3)

Family

61% (364)

32% (192)

6% (36)

(2)

Traditional leader

28% (165)

57% (338)

15% (89)

(2)

Church/religious leader

22% (131)

62% (367)

16% (94)

(2)

Friends

20% (117)

62% (369)

18% (106)

(2)

Work colleague

9% (52)

64% (379)

27% (161)

(2)

Teachers

8% (48)

66% (391)

26% (153)

(2)

Neighbors

5% (32)

48% (285)

46% (275)

(2)

*Missing numbers not included in % calculation

D. Ethical considerations

E1. Quantitative Cross-sectional Survey

E1.2. Perceptions and attitudes to people living with HIV

Table 1: How easy or difficult is it for a person with HIV/AIDS to talk about their status RELATIONSHIP

EASY

DIFFICULT

VERY DIFFICULT

Partner

69% (409)

27% (157)

4% (25)

MISSING* (3)

Family

61% (364)

32% (192)

6% (36)

(2)

Traditional leader

28% (165)

57% (338)

15% (89)

(2)

Church/religious leader

22% (131)

62% (367)

16% (94)

(2)

Friends

20% (117)

62% (369)

18% (106)

(2)

Work colleague

9% (52)

64% (379)

27% (161)

(2)

Teachers

8% (48)

66% (391)

26% (153)

(2)

Neighbors

5% (32)

48% (285)

46% (275)

(2)

*Missing numbers not included in % calculation

E1.2.2. Respondents attitudes to people living with HIV The frequency of responses to 11 questions in this regard is presented in Table 2. The majority of the respondents (95%) felt comfortable working with persons living with HIV. A minority of the respondents (6%) felt HIV positive persons should be identifiable, 16% felt that HIV infected persons should not be allowed to work, 6% felt they would have a problem living in a house with someone that was HIV positive and 6% of respondents thought HIV infected persons needed to have their own toilet. Only 8% of respondents felt HIV positive children should not be allowed to attend school, while 12 % felt HIV positive persons should have their own eating utensils, and 14% felt HIV positive persons should have their own hospital. About a third of the respondents (34%) thought that the community would shun an HIV positive person who shared their status with the community, and 22% of the respondents felt that HIV positive women should be allowed to have babies (see Table 2). The most important difference by gender was that 42% of men thought that if an HIV positive person shared their status with the community, they would be shunned or isolated, compared with 28% of women. Similarly, 23% of men and 15% of women did not think HIV infected persons would get support from the community. Apart from this there were no striking differences according to gender regarding stigmatising attitudes; however stigmatizing attitudes were slightly more common among men than among women. 20% of men compared with 15% of women thought HIV positive persons should not continue working. 17% of men compared with 13% of women

Table 2: Attitudes to people living with HIV AGREE

DISAGREE

MISSING*

HIV positive people must be easily identifiable

6% (35)

94% (557)

(2)

I have a problem living in the same house with someone who has HIV/AIDS

6% (36)

94% (556)

(2)

HIV positive people must use a separate toilet

6% (38)

94% (554)

(2)

HIV positive children must go to school

92% (541)

8% (50)

(3)

HIV positive people should be kept in their own hospital away from other people

14% (85)

86% (507)

(2)

HIV positive people must have their own eating utensils

12% (69)

88% (523)

(2)

An HIV positive person should be allowed to continue working

84% (494)

16% (97)

(3)

An HIV positive person should be allowed to have babies

23% (135)

77% (457)

(2)

If an HIV positive person shares their status with someone else in the community, they will be shunned or isolated

34% (198)

66% (393)

(3)

A person with HIV/AIDS will get support from his/her community

82% (486)

18% (105)

(3)

I have a problem working with someone who has HIV/AIDS

5% (31)

95% (561)

(2)

*Missing numbers not included in % calculation

thought HIV positive persons should have their own hospital. 15% of men compared with 10% of women thought HIV positive persons should have their own eating utensils. 10% of men and 7% of women thought HIV positive children should not be allowed to go to school. 8% of men and 5% of women would have a problem living in the same house as someone with HIV/AIDS. The same proportions thought HIV positive persons should have a separate toilet. 7% of men and 5% of women thought that HIV positive persons should be identifiable. 6% of men and 5% of women had a problem working with someone that is HIV positive. Similar numbers of men and women (23%) thought HIV positive women should be allowed to have babies.

E1.2.3. Potential sources of support for people living with HIV As with the hierarchy of people that participants thought it would be easy to speak with about their HIV infection (should they become infected); the persons that participants in this survey thought would support them was related to closeness of the relationship (see Table 3). In descending order of those likely to support a person with HIV and AIDS were family (94%), partner (84%), church/religious group (62%), friends (61%), neighbours (54%), colleagues (52%), civic structure (51%) and social leader (48%). Other sources of support mentioned (in descending order of frequency) were; community health workers (41%), community (26%), donâ&#x20AC;&#x2122;t know (13%), partner/relatives/those close to me (12%), doctor/nurse/clinic staff (15%). Table 3: Likely sources of support for a person with HIV and / or AIDS in Vulindela

About a third of the respondents (34%) thought that the community would shun an HIV positive person who shared their status with the community, and 78% of the respondents felt that HIV positive women should not be allowed to have babies.

YES

Family

94% (550)

6% (33)

(11)

Partner

85% (493)

15% (89)

(12)

Church/religious group

62% (361)

38% (221)

(12)

Friends

62% (360)

38% (222)

(12)

Neighbours

55% (318)

45% (265)

(11)

Colleagues

53% (308)

47% (275)

(11)

Civic structure

51% (297)

49% (285)

(12)

Social leader

49% (284)

51% (299)

(11)

Other

93% (548)

7% (44)

(2)

OTHER SPECIFIED (CODED) Community health worker/care giver

41% (223)

Doctor/nurse/clinic

8% (45)

Community

26% (139)

Donâ&#x20AC;&#x2122;t know

13% (73)

Partner/relatives/those close to me

12% (65)

Missing

MISSING*

*Missing numbers not included in % calculation

(3)

Table 2: Attitudes to people living with HIV AGREE

DISAGREE

MISSING*

HIV positive people must be easily identifiable

6% (35)

94% (557)

(2)

I have a problem living in the same house with someone who has HIV/AIDS

6% (36)

94% (556)

(2)

HIV positive people must use a separate toilet

6% (38)

94% (554)

(2)

HIV positive children must go to school

92% (541)

8% (50)

(3)

HIV positive people should be kept in their own hospital away from other people

14% (85)

86% (507)

(2)

HIV positive people must have their own eating utensils

12% (69)

88% (523)

(2)

An HIV positive person should be allowed to continue working

84% (494)

16% (97)

(3)

An HIV positive person should be allowed to have babies

23% (135)

77% (457)

(2)

If an HIV positive person shares their status with someone else in the community, they will be shunned or isolated

34% (198)

66% (393)

(3)

A person with HIV/AIDS will get support from his/her community

82% (486)

18% (105)

(3)

I have a problem working with someone who has HIV/AIDS

5% (31)

95% (561)

(2)

*Missing numbers not included in % calculation

YES

Family

94% (550)

6% (33)

(11)

Partner

85% (493)

15% (89)

(12)

Church/religious group

62% (361)

38% (221)

(12)

Friends

62% (360)

38% (222)

(12)

Neighbours

55% (318)

45% (265)

(11)

Colleagues

53% (308)

47% (275)

(11)

Civic structure

51% (297)

49% (285)

(12)

Social leader

49% (284)

51% (299)

(11)

Other

93% (548)

7% (44)

(2)

OTHER SPECIFIED (CODED) Community health worker/care giver

41% (223)

Doctor/nurse/clinic

8% (45)

Community

26% (139)

Donâ&#x20AC;&#x2122;t know

13% (73)

Partner/relatives/those close to me

12% (65)

Missing

MISSING*

*Missing numbers not included in % calculation

(3)

E1.3. Disclosing HIV status, sources of support and responses from potential sources of support E1.3.1. Willingness to disclose HIV status and who to The majority of participants said they would disclose their positive HIV status if they became infected (83% of respondents would tell someone if they were infected, 16% would not and 1% did not know whether they would tell anyone) (see Table 4). Similar proportions of men and women would divulge their HIV status should they become infected (82% vs. 85% respectively). (See Table 4.) If a respondent were infected with HIV/AIDS they would tell persons closest to them, in descending order the proportion of participants choosing to disclose to the following persons were; family (80%), partner (71%), friends (24%), church/religious group (20%), colleagues (12%), neighbours (7%) (see Table 5). In addition, 77% of participants marked other persons they would tell: the most common responses were mother/women in the family (43%), brothers/sisters/close family (23%), sexual partner (15%), those close to me (13%), community health worker/care givers (4%), priest (2%). A greater proportion of men than women would share their status with friends (33% vs. 19%), work colleagues (17% vs. 8%), and neighbors (9% vs. 5%). Similar proportions would share their status with family (82% of men and 79% of women), partners (73% of men and 70% of women) church/religious groups (20% each).

Table 4: Willingness to disclose status YES

DON’T KNOW

MISSING*

83% (490)

16% (93)

1% (6)

(5)

*Missing numbers not included in % calculation

Table 5: Potential persons to disclose HIV status to YES

DON’T KNOW

MISSING*

Family

80% (391)

20% (99)

Partner

71% (349)

28% (137)

1% (4)

Friend

24% (117)

75% (369)

1% (3)

Church/religious group

20% (96)

78% (383)

2% (9)

Colleagues

12% (57)

87% (426)

1% (7)

7% (32)

92% (449)

2% (9)

77% (378)

23% (110)

Neighbours Other OTHER, SPECIFY Mother/women in the family

43% (161)

Siblings/close family

23% (86)

Sexual partner

15% (57)

Those close to me

13% (47)

Community health worker

4% (15)

Priest

2% (6)

Missing*

Uncertainty about this question ranged between 7% and 18%, with least uncertainty about the community gossiping about them and assuming they were unfaithful (<10%) and more uncertainty regarding whether they would be provided medicine and allowed to continue with community activities (>15%).

(6)

*Missing numbers not included in % calculation

Table 6: Perceptions of community attitude to respondent if HIV infected YES

DON’T KNOW

Perception of societal stigma if HIV infected Perceptions of stigmatising behaviour by the community were high, and these data are presented in Table 6. For example 86% of respondents thought the community would gossip about them if they knew they were HIV positive; 84% would assume they had been unfaithful to their partner; and 83% would assume the respondent was promiscuous, Further, 59% thought that the community would not pray for them; 63% thought they would not provide them with medicine; 68% thought they would not be allowed to continue participating in community activities; 70% thought they could not continue to belong to social groups; and 82% thought the community would not treat them the same way as before (see table 6).

MISSING*

Will assume that I have been unfaithful to my partner

94% (490)

8% (45)

8% (48)

(11)

Will gossip about me

86% (502)

7% (38)

(7% (43)

(11)

Assume that I have been sleeping around

83% (486)

9% (53)

8% (44)

(11)

Will pray for me

25% (145)

59% (343)

16% (94)

(12)

Will provide medicine

19% (113)

63% (364)

18% (105)

(12)

Allow me to continue participating in community activities

16% (91)

68% (397)

16% (94)

(12)

Allow me to continue belonging to social groups

15% (86)

70% (406)

16% (91)

(11)

Treat me in the same way as before

10% (60)

82% (475)

8% (46)

(13)

Other (specify)

95% (561)

4% (21)

1% (6)

(6)

The open-ended question responses in descending order of frequency were as follows; isolate/avoid (27%), treat badly (18%), disgusted/laugh/gossip (15%), treat same as before/well (10%), harass (10%), don’t know (10%), discriminate (9%).

Reaction of sexual partner if HIV positive The perceived reaction of the partner to knowledge of putative positive HIV status was relatively poor. These data are shown in Table 7. In descending order of frequency of reporting were: provide material support (59%), provide medicine (59%), agree to protected sex (56%), pray for me (56%), leave me (21%), force me to leave home (18%), beat me (12%). Uncertainty around these questions (i.e. an answer of don’t know) was relatively constant at about 20% (see table 7).

Perceptions of stigmatising behaviour by the community were high...For example 86% of respondents thought the community would gossip about them if they knew they were HIV positive; 84% would assume they had been unfaithful to their partner; and 83% would assume the respondent was promiscuous.

Table 7: Perception of partner treatment of respondent HIV positive YES

DON’T KNOW

Provide material support

59% (331)

21% (119)

20% (111)

MISSING* (33)

Provide medicine

59% (330)

21% (117)

20% (114)

(33)

Will agree to protected sex

56% (316)

20% (114)

23% (131)

(33)

Pray for me

56% (313)

23% (129)

21% (119)

(33)

Will leave me

21% (121)

57% (322)

21% (116)

(35)

Will force me to leave home

18% (104)

61% (345)

20% (112)

(33)

Will beat me up

12% (67)

69% (387)

19% (107)

(33)

Other (specify)

94% (556)

4% (24)

1% (8)

(6)

*Missing numbers not included in % calculation Other specify was not coded, therefore breakdown not presented here

*Missing numbers not included in % calculation

Table 4: Willingness to disclose status YES

DON’T KNOW

MISSING*

83% (490)

16% (93)

1% (6)

(5)

*Missing numbers not included in % calculation

Table 5: Potential persons to disclose HIV status to YES

DON’T KNOW

MISSING*

Family

80% (391)

20% (99)

Partner

71% (349)

28% (137)

1% (4)

Friend

24% (117)

75% (369)

1% (3)

Church/religious group

20% (96)

78% (383)

2% (9)

Colleagues

12% (57)

87% (426)

1% (7)

7% (32)

92% (449)

2% (9)

77% (378)

23% (110)

Neighbours Other OTHER, SPECIFY Mother/women in the family

43% (161)

Siblings/close family

23% (86)

Sexual partner

15% (57)

Those close to me

13% (47)

Community health worker

4% (15)

Priest

2% (6)

Missing*

(6)

*Missing numbers not included in % calculation

Table 6: Perceptions of community attitude to respondent if HIV infected YES

DON’T KNOW

MISSING*

Will assume that I have been unfaithful to my partner

94% (490)

8% (45)

8% (48)

(11)

Will gossip about me

86% (502)

7% (38)

(7% (43)

(11)

Assume that I have been sleeping around

83% (486)

9% (53)

8% (44)

(11)

Will pray for me

25% (145)

59% (343)

16% (94)

(12)

Will provide medicine

19% (113)

63% (364)

18% (105)

(12)

Allow me to continue participating in community activities

16% (91)

68% (397)

16% (94)

(12)

Allow me to continue belonging to social groups

15% (86)

70% (406)

16% (91)

(11)

Treat me in the same way as before

10% (60)

82% (475)

8% (46)

(13)

Other (specify)

95% (561)

4% (21)

1% (6)

(6)

Table 7: Perception of partner treatment of respondent HIV positive YES

DON’T KNOW

Provide material support

59% (331)

21% (119)

20% (111)

MISSING* (33)

Provide medicine

59% (330)

21% (117)

20% (114)

(33)

Will agree to protected sex

56% (316)

20% (114)

23% (131)

(33)

Pray for me

56% (313)

23% (129)

21% (119)

(33)

Will leave me

21% (121)

57% (322)

21% (116)

(35)

Will force me to leave home

18% (104)

61% (345)

20% (112)

(33)

Will beat me up

12% (67)

69% (387)

19% (107)

(33)

Other (specify)

94% (556)

4% (24)

1% (8)

(6)

*Missing numbers not included in % calculation Other specify was not coded, therefore breakdown not presented here

*Missing numbers not included in % calculation

Reaction of family if HIV positive The perceived reaction of the family’s knowledge of reputed positive HIV status was relatively better than that for the respondent’s partner. These data are presented in Table 8. In descending order of frequency of responses were: provide food (90%), take me to the clinic/doctor (90%), nurse me when I am sick (89%), provide medicine for me (89%), allow me to continue living in house (88%), pray for me (87%), show me love (85%), treat me in the same way as before (84%), force me to stay in room (13%), force me to leave home (9%). Uncertainty about these questions ranged between 5% and 7%. If their families knew they were HIV positive, slightly more men than women thought they would allow them to continue living at home (93% vs. 85%), would nurse them when they were sick (94% vs. 86%), pray for them (92% vs. 84%), provide medicine (94% vs. 87%), provide food (94% vs. 88%), take them to the clinic or doctor (93% vs. 88%), show them love (90% vs. 82%) and treat them the same was as before (89% vs. 81%). More women thought they would be forced to stay in their room (15% vs 8%) or leave home (10% vs. 6%). Desired support if HIV infected From Community This open-ended question was coded and the following responses in descending order of frequency were love me, treat me well, help and care (49%), not gossip, not avoid, not discriminate (28%), accept/same as before (17%), not isolate/not pity (3%), and not sure or don’t care (2%) (see Table 9).

Table 8: Perception of family treatment of respondent if HIV positive YES

DON’T KNOW

MISSING*

Will provide food

90% (532)

5% (27)

5% (29)

(6)

Take me to the clinic/doctor

90% (528)

5% (31)

5% (29)

(6)

Nurse me when I am sick

89% (525)

5% (29)

6% (34)

(6)

Will provide medicine

89% (525)

5% (29)

6% (34)

(6)

Pray for me

87% (509)

8% (47)

5% (32)

(6)

Allow me to continue living in the house

88% (517)

6% (35)

6% (36)

(6)

Show me love

85% (500)

7% (41)

8% (47)

(6)

Treat me in the same was as before

84% (492)

9% (50)

8% (46)

(6)

Force me to stay in my room

13% (74)

81% (477)

6% (37)

(6)

9% (50)

86% (507)

5% (31)

(6)

96% (567)

4% (22)

0% (3)

(2)

Force me to leave home Other specify

*Missing numbers not included in % calculation

From family and friends This open-ended question was coded and the following responses in descending order of frequency include: as before/well (49%), show love/take care (36%), help me/nurse me (6%), not gossip/not discriminate/not avoid me (6%), better than before/as it suits them (2%) (see Table 10). Willingness to have an HIV test Of note is that 28% of the respondents had had an HIV test in the past. Of those who did not have an HIV test in the past (n=429), the majority (63% (n=272)) indicated that they would like to have an HIV test, and 36% (n=156) would not want to have an HIV test, and one respondent did not answer this question.

Table 9: Desired support from community if HIV positive? Show love/treat me well/care/help

49% (288)

Not gossip/avoid/ discriminate

28% (165)

Same as before/accept

17% (100)

Not isolate/not pity me

3% (20)

Not sure/don’t care

2% (12)

Table 10: Desired support from family and friends if HIV positive Same as before/well

49% (280)

Take care/show me love

36% (206)

Not gossip/ discriminate/avoid

6% (34)

Help me/nurse me

6% (36)

As it suits them/better than before because I am family

2% (13)

What were respondents willing to talk about or could be assessed in the survey Although the initial proposal was to sample 10% of the households and to only enquire about issues relating to stigma and discrimination; during the formative research and community consultation process reluctance was expressed to be only interviewed about HIV related stigma and discrimination. Therefore the sampling frame was expanded to include some more non-threatening issues as well as issues the community wanted more information on. Additionally it was established that while most people were either aware of someone living with HIV or having died of AIDS in this community they did not want to respond to such questions, hence questions relating to this were deleted from the final version of the questionnaire. Most participants were unable to distinguish between HIV infection and AIDS and this question was also excluded from the final questionnaire. Some of the issues with which there was a reluctance to engage during the survey, were picked up in the focus group discussions to try and understand reasons for their attitude to these questions. The feedback from the field workers during the debriefing sessions indicated that respondents were divided in their responses to the stigma and Discrimination questions. At one level they seemed understanding and accepting of those infected and affected, but at another level they seemed to harbor fears of being

stigmatised and discriminated against were they found to be HIV+. Some of these fears stemmed from witnessing instances where a family member who had AIDS was isolated when they were sick or were not allowed to live in the household.

The feedback from the field workers during the debriefing sessions indicated that respondents were divided in their responses to the stigma and discrimination questions. At one level they seemed understanding and accepting of those infected and affected, but at another level they seemed to harbor fears of being stigmatised and discriminated against were they found to be HIV+. 21

Table 8: Perception of family treatment of respondent if HIV positive YES

DON’T KNOW

MISSING*

Will provide food

90% (532)

5% (27)

5% (29)

(6)

Take me to the clinic/doctor

90% (528)

5% (31)

5% (29)

(6)

Nurse me when I am sick

89% (525)

5% (29)

6% (34)

(6)

Will provide medicine

89% (525)

5% (29)

6% (34)

(6)

Pray for me

87% (509)

8% (47)

5% (32)

(6)

Allow me to continue living in the house

88% (517)

6% (35)

6% (36)

(6)

Show me love

85% (500)

7% (41)

8% (47)

(6)

Treat me in the same was as before

84% (492)

9% (50)

8% (46)

(6)

Force me to stay in my room

13% (74)

81% (477)

6% (37)

(6)

9% (50)

86% (507)

5% (31)

(6)

96% (567)

4% (22)

0% (3)

(2)

Force me to leave home Other specify

*Missing numbers not included in % calculation

Table 9: Desired support from community if HIV positive? Show love/treat me well/care/help

49% (288)

Not gossip/avoid/ discriminate

28% (165)

Same as before/accept

17% (100)

Not isolate/not pity me

3% (20)

Not sure/don’t care

2% (12)

Table 10: Desired support from family and friends if HIV positive Same as before/well

49% (280)

Take care/show me love

36% (206)

Not gossip/ discriminate/avoid

6% (34)

Help me/nurse me

6% (36)

As it suits them/better than before because I am family

2% (13)

Other factors impacting disclosure of HIV status included concerns about adding to the emotional burden of the family particularly where a death had already taken place previously; as well as embarrassment stemming from fear and shame. In contrast to the perception that the community awareness and knowledge of HIV and AIDS was low, the respondents in this focus group were able to articulate a very nuanced and detailed understanding of HIV including details on physical appearance and a good description of AIDS related symptoms. Trust was an over-riding factor in terms of who they would disclose their status to; and in most instances this was associated with a sexual partner or family member (usually mother or sister). In some instances the community health worker was identified as the person to disclose to because they were perceived to be linked with the ability to access care. The lack of trust in faith based organisations as sources of support or supportive of disclosure was quite striking. Women generally were perceived as better carers and reliable and this extended to the broader community and not just within a household.

E2. Focus Group Discussions E2.1. HIV status not known: groups under-represented in survey Of the six FGDs conducted, one included men and women, two were women only and three were men only (one of which was with young men). A total of 59 people participated in these focus groups with an age range from 18-68 years; 21 women and 38 men.

Factors influencing disclosure included perception of limited knowledge of HIV test or disease among family members and community; as well as fear emanating from the understanding that HIV and AIDS was fatal. Most felt comfortable about disclosing their HIV status to family but had concerns about disclosure outside of the family. The latter was influenced by a perception that the response would be from a moral high ground and would be judgemental and perceived to be irresponsible.

Responses were mixed and ranged from non-discriminatory to discriminatory depending on the interaction. For example while most respondents were in support of the rights of HIV infected persons to work and had no problem with having them as colleagues, these same individuals had problems with sharing eating utensils and ablution space with colleagues living with HIV. Respondents who did not believe that HIV infected persons had a right to work also were supportive of policies to isolate infected persons.

Generally there was concern about HIV infected children going to pre-school and their children having any physical contact. Willingness to have an HIV test among those who were unaware of their status was high and was linked to access to treatment as this was perceived be a good reason to have a test. A minority of the respondents expressed some denial about HIV and AIDS. In these instances illness was blamed on traditional healers, witchcraft and infection through nursing and perceived to be associated with the establishment of democracy in South Africa. The gender differences in perceived rights and responses were quite striking. For example, many participants felt that HIV infected women did not have a right to have children and if they fell pregnant their pregnancy should be terminated. Others felt that married women had an obligation to have children even if they were HIV positive â&#x20AC;&#x201C;the issue of choice and autonomous decision-making by adult women was not even considered as an option. There was a perception that men were more likely to abandon their infected partners compared to women. Men also felt that as they had paid lobola1, they were entitled to be cared for by their partner. For those in denial, blaming women for being vectors of disease was common. While family was identified as a source of support and care this was most often identified as the mother or sister.

E1.2. Experiences of those having an HIV test at a VCT site E1.2.1. Focus group discussion with HIV negative individuals participating in a longitudinal study requiring 3 monthly HIV testing or were waiting to have an HIV test. Two FGDs were conducted with this group of women aged between 18-35 years. Reasons cited by this group for having an HIV test included: desire to know HIV status; confirmation of HIV negative status; the ability to intervene early should they be infected; awareness of lots of people living with AIDS and wanting to confirm personal status and letting others in the family know if ill; partner had an HIV test and they wanted to assure partner of their HIV status; or their partner had requested them to have an HIV test. For those who had already had an HIV test, knowledge of their negative HIV status in some respondents had not led to any behavioural changes, whilst in others it had inspired them to get more information about safer sex and to start using condoms consistently. In some instances study participation had led to more communication about HIV risk and safer sex practices with their partner leading to some partners also wanting to have an HIV test. In one instance a physically and sexually abusive partner agreed to come to the research facility and following a discussion with the research clinician changed his behaviour and was now more supportive and communicative with his partner.

Lobola is a set amount paid by a prospective husband to the brideâ&#x20AC;&#x2122;s family among certain peoples in southern Africa

For those who had not yet had their HIV test they said they would be shocked if they were positive and would like to know how it happened since they practiced safer sex. Others expressed disappointment as they have been practicing safer sex, and would disclose their status to their partner and demand an explanation. In other cases they would disclose to a family member â&#x20AC;&#x201C; either a sibling, mother or grandmother, as they would like to receive comfort and care. Although they anticipated support from their family on disclosure, they also expected some reprimand for disregarding advice provided on HIV prevention. They further indicated that they would advise their family against taking them to traditional healers and discourage blaming their status on witchcraft. Some respondents expressed reluctance to disclose their status to others in their community as they perceived others in the community to be ill-informed about HIV and AIDS and would discriminate against them for being infected. Others felt that it would be easy to disclose to others in the community as there is a great deal of awareness about HIV and AIDS in the community, and for those who were not aware this would be an opportunity to increase their awareness. Some respondents perceived disclosure to others as spiritual freedom and a responsibility they had to others in their community to protect them from becoming infected.

Lobola is a set amount paid by a prospective husband to the brideâ&#x20AC;&#x2122;s family among certain peoples in southern Africa

F. Discussion E1.2.2 Focus group discussion with participants in the CAPRISA AIDS Treatment Project (CAT) The two FGDS included 4 men and 10 women with an age range from 20-58 years. Not surprisingly the impetus for testing for many of these respondents came from being ill and many provided graphic descriptions of signs and symptoms of advancing HIV including; continuous diarrhoea, headache, weight loss, peripheral neuropathy, fevers, feeling ill. Some were advised by their Community Health Worker to have an HIV test; others had a partner who was ill and they suspected had AIDS. Women who were monogamous were angry that their partner had infected them and felt quite disempowered. The young women perceived that they were at high risk of getting infected if they were sexually active because of their age and felt it important to know their HIV status. These respondents anticipated their positive test results because of their signs and symptoms or suspicion of their partner’s sexual behaviour. Disclosure and the extent of disclosure of HIV status was varied. Some informed their entire family especially where the family had experienced the death of another sibling or spouse. Responses of family members were varied and ranged from being fully supportive to disgust. Where family members were not accepting of their HIV status, respondents were upset, especially if their partner had already died. Some respondents saw disclosure as an opportunity to encourage their spouses or partners to have an HIV test. For some, fear precluded them from disclosing their HIV status. Although most were happy

about the support they received from family members in their own homes, they were uncertain about how they would be treated when they visited the homes of their family members. A particular concern was being served with different utensils or being isolated from their nieces and nephews or other children in the home. Some reported being discriminated against by employers following hospitalisation and expressed fear about the possibility of losing their job. Some had a more pragmatic approach to disclosure indicating that being as ill as they were gave them courage to be open about their status as they had nothing to lose. Others felt ashamed and embarrassed coming to the research facility as they felt that this was confirmation of their status to people from their community. Some expressed concern about persons with AIDS from the community who were in denial. Although some were scared of public speaking, the majority of the respondents expressed interest in participating in a community awareness program on HIV testing, as there was a perception that some people had never seen anyone with HIV. Some expressed the need for skills to disclose their HIV status to their children, and others were keen to work in other communities and not their own. One participant described her family’s strong belief in traditional medicine and the loss of three cousins due to the family’s refusal to seek help from the hospital; and would like to have the skills to encourage her family members to have an HIV test.

Respondents requested assistance with communication skills, as some were still coming to terms with their HIV status, and could not at this stage express what support they would require. Others were looking for employment and involvement in projects which they perceived as a great destressor. Some reported losing their jobs because of illness. Others expressed the need for food especially fresh fruit and vegetables. Of note is that the group expressed appreciation for participation in the group discussion as they came to realise that they were not alone in their anguish of coming to terms with their HIV status and the implications of being infected.

Disclosure and the extent of disclosure of HIV status was varied. Some informed their entire family especially where the family had experienced the death of another sibling or spouse. Responses of family members were varied and ranged from being fully supportive to disgust. Where family members were not accepting of their HIV status, respondents were upset, especially if their partner had already died.

There is in general a good knowledge of HIV, and awareness of people living with HIV and AIDS related deaths in this community. The attitudes expressed towards people living with HIV and AIDS is generally positive and supportive. It was interesting that while most respondents reflected a good knowledge and understanding of HIV and AIDS they perceived the community knowledge and understanding of HIV and AIDS to be poor. The willingness to learn and change their risk behaviours was highlighted and catalysed by access to information on testing and treatment that they did not receive previously. Importantly, it was impressive that about a third of the participants in the survey have had an HIV test

and two thirds of the remainder was willing to have a test. One of the most striking findings of both the quantitative and qualitative component of this study was the substantial shift in the community in acknowledging AIDS and AIDS related deaths. Participants talked about AIDS and “death from AIDS” and not “a new disease” or “the new disease killing our young” as was the case about two years ago at the start of our research in this community. In contrast, the complex dynamic between personal knowledge and publicly articulating knowledge and fear of disclosure is captured in “we all know, but we don’t want to say” in relation to the impact of AIDS on the community.

The centrality and importance of trust in driving disclosure is reflected in the consistent identification of family and partner as sources of support and persons to disclose to. In some instances participants chose not to disclose their status to family members because of not wanting to burden family especially where an AIDS related death had already occurred. Fear to disclose was strongly linked to the expectation of strong moralistic and judgemental responses. They expressed fear and shame of being labeled in a negative way and their biggest fear was non-acceptance by family. The challenge of disclosing when one was not ill was highlighted - some felt that disclosure should happen at the end when one starts to get ill.

G. Conclusion This study highlights the complexity of the unfolding and maturing epidemic on this community and how they are responding to its impact. For example, while family members were identified as an important source of support and would be key individuals to disclose their HIV status to; a definition of family started to emerge during the focus group discussions that saw family restricted only to members of a specific household as opposed to the extended family. The participants in the FGDs felt that when it came to issues of HIV and AIDS stigma any information regarding a sick member of the household sharing information with the extended family and relatives beyond the affected household, created an opportunity for gossip and malice.

However in the era of AIDS, some families choose not to open the coffin for public viewing because of the extreme physical wasting of the deceased. The community interpretation of cause of death is therefore informed by whether the coffin was open or closed. Disclosure was perceived to be like “peeling an onion” with the closest and most intimate members of the household being the easiest and representing the outer most layers and the process getting more difficult when it came to others like the extended family, neighbours etc. Another glimpse of the complexity of coping with HIV at a household level can be seen from responses relating to visiting ill

persons. Respondents indicated how in the past (prior to HIV and AIDS), relatives, neighbours and members of the community freely visited the sick amongst them. Now with the advent of AIDS and the stigma attached to the disease, it has become taboo to make an unsolicited visits to a home where there is an AIDS patient . Visits were interpreted as the visitor was only there to confirm the rumours that the sick person had AIDS. There were reports of the visitor being interrogated as to who informed them that there was a sick person in the home. Those who visited an AIDS patient by invitation felt harassed by community members who were not invited to confirm the diagnosis of the sick person after their visit. Some of the most graphic descriptions of stigma emerged around discussions of funerals which are fairly commonplace in this community. Prior to AIDS it was common practice for community members to attend the funeral as a sign of respect and a key part was to have the coffin lid open during the funeral proceedings. However in the era of AIDS, some families choose not to open the coffin for public viewing because of the extreme physical wasting of the deceased. The community interpretation of cause of death is therefore informed by whether the coffin was open or closed; where a closed coffin equates to an “AIDS death” and an open coffin to a nonAIDS related death. A significant finding of this study was the lack of confidence the community had in their religious leaders in terms of support or for disclosure of their HIV status. Concern was also expressed about the involvement of people living with HIV in reducing stigma and discrimination. Generally people in this

community associated HIV with being sick and wasted so if a person who is well tries to promote the notion of being HIV+ and living positively it is then said that they are puppets who have been paid to spread the rumour about the existence of HIV and AIDS. The community health workers emerged as an important source of other support outside the family. They were viewed with trust and as an important link to access health services. The community also expressed a preference to use respectable community members and key informants selected through a consultative process to work towards reducing the stigma and discrimination. Ideally these would be people that are known to have lost children or spouses to AIDS. However, concern was also expressed about a new stigma emerging, namely the stigmatising of survivors.

Study Significance/Conclusion This study provides useful baseline data for the design of future studies or interventions to better understand and/or reduce HIV and AIDS related stigma and discrimination in this community and possibly in other similar communities. Through dissemination of the study findings to key stakeholders, further similarities from other settings could be identified and implications for deepening our understanding of AIDS related stigma and discrimination beyond this community could be explored.

The richness and insights shared with the research team especially during the focus group discussions reflects a impressive depth of understanding of the evolving epidemic in this community and the reflection and thought that community members are giving to this major threat to them and their families.

Disclosure was perceived to be like “peeling an onion” with the closest and most intimate members of the household being the easiest and representing the outer most layers and the process getting more difficult when it came to others like the extended family, neighbours etc. 27

H. Acknowledgements Data Dissemination

Acknowledgements

References

Data emanating from this study will be disseminated through multiple fora and forms. At least one peer-reviewed scientific publication will be prepared that captures the key findings of this study. The findings will be shared with the Vulindlela community including health service providers, civic structures and community leadership. Data will also be presented at relevant and appropriate conferences and meetings.

We thank JOHAP for their financial and technical support that enabled us to undertake this study and for creating numerous opportunities, platforms and fora for us to share the “research in progress” .

Abdool Karim Q, Abdool Karim SS. South Africa: Host to a new and emerging HIV epidemic. Sexually Transmitted Infections 1999, 75:139-140.

Study Team Quarraisha Abdool Karim, PhD Lillian Mboyi, BA Gethwana Makhaye, BA (Hons) Henri Carrara, MS Janet Frohlich, PhD May Mashego, MBChB Ayesha Kharsany, PhD, MS(Epi) Beverley Haddad, PhD

We express our deep appreciation to the community leadership for their support. We thank all the members of the study team for their various contributions in conceptualising, implementing and interpreting the study findings. We thank Janet Frohlich and Beverley Haddad for selecting and training the fieldworkers, and Gethwana Makhaye for facilitating the Focus Group Discussions, and for analysing the findings from the Focus Group Discussions, and for her central and critical role in disseminating we study findings to the community. We also thank the eight fieldworkers; Nompumelelo Ngcobo, Thokozile Ndlovu, Wiseman Ntombela, Zibuyile Magubane, Jerome Dlamini, Tholakele Shange, Thulisile Zondo and Thokozani Madonda for undertaking the census and administering the questionnaires; as well as Leora Sewnarain and Marian Swart for their administrative support to the project, Lillian Mboyl ( a Caprisa Research Fellow) and Ayesha Kharsamy for data quality assurance. Lastly we thank the Director of Caprisa Prof. SS Abdool Karim for his support and interest in this project.

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