Perspectives on Terrence Higgins Trust's HIV Prejudice and Discrimination Poster Campaign. Barnet Primary Care Trust

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1 For further information on HIV and AIDS call Terrence Higgins Trust Grays Inn Road London WC1X 8JU Research Report for Terrence Higgins Trust and Barnet Primary Care Trust HIV can t be passed on by living with, working with or even drinking with someone who has HIV. So why are we so prejudiced against people with HIV? People with HIV are still people - children, parents, professionals and members of our community - with just as much to offer as anyone else. And like anyone else, need the love and support of family, friends and the whole community. Prejudice? Think about it. HIV can t be passed on by drinking with, living with or working with someone who has HIV. So why are we still so prejudiced against people with HIV? People with HIV are still people - parents, children, professionals and members of our community, with just as much to offer as anyone else. And like anyone else, need the love and support of family, friends and the whole community. Prejudice? Think about it. HIV can t be passed on by living with, working with or even caring for someone who has HIV. So why are we so prejudiced against people with HIV? People with HIV are still people parents, children, professionals and members of our community with the same rights to human dignity and equal opportunities as anyone else. And like anyone else, need the love and support of family, friends and the whole community. Prejudice? Think about it. For further information on HIV and AIDS call Terrence Higgins Trust Grays Inn Road London WC1X 8JU For further information on HIV and AIDS call Terrence Higgins Trust Grays Inn Road London WC1X 8JU Perspectives on Terrence Higgins Trust's HIV Prejudice and Discrimination Poster Campaign Views of Barnet residents, African business owners and their customers Gillian Elam, Qualitative Social Policy Research Edited by Liz Kawonza, Head of African Services Development Terrence Higgins Trust March 2004 Barnet Primary Care Trust

2 Report for Terrence Higgins Trust and Barnet Primary Care Trust Perspectives on Terrence Higgins Trust s HIV Prejudice and Discrimination Poster Campaign Views of Barnet Residents, African Business Owners and Their Customers Gillian Elam, Qualitative Social Policy Research Edited by Liz Kawonza, Head of African Services Development Terrence Higgins Trust December 2003

3 Contents Acknowledgements...ii Summary...iii Foreword Study background and methods Introduction Study background Research aims Research methods Report structure Distribution of THT s HIV Prejudice and Discrimination Campaign posters Distribution of the posters Acceptance of the posters by Awaredressers businesses Display of the posters in local businesses Awareness of the posters among customers Reactions to individual THT HIV Prejudice and Discrimination Campaign posters Impact of images used in the posters Understanding of the message of the posters Perceptions of Terrence Higgins Trust Views about THT s HIV Prejudice and Discrimination Poster Campaign Evidence of need for an HIV Prejudice and Discrimination Campaign Agreement that it is wrong to discriminate against people with HIV Disagreement with the link between prejudice and discrimination Underlying fear of contact with people with HIV Impact of fear of HIV on attitudes towards people living with HIV Impact of education on attitudes towards people with HIV Impact of the poster campaign on attitudes Targeting black Africans with HIV awareness campaigns HIV awareness campaigns welcomed in the African community Discontent about images of black Africans in the posters Support for use of images of black Africans in the posters Suggestions for future campaigns Continuation with the poster campaigns Reduce focus on HIV Other ways to address HIV discrimination and prejudice...43 Appendices...I Appendix 1 Sample Profile...I Appendix 2 Fieldwork Profiles...II i

4 Acknowledgements We are grateful to Barnet residents who generously contributed time, opinions and ideas to this project. Liz Kawonza of Terrence Higgins Trust, David King, Adwoa Bonsu, Sophia Roberts, Alaba Mboge and Eric Fretz of Barnet Health Development and Regeneration Team provided advice and support throughout the study. Special thanks go to Kay Parkinson, Daisy Byaruhanga- Bamuturaki of Innovative Visions, David Lloyd at the Barnet HIV Community Support Team and the Awaredressers volunteers for assisting in the recruitment of participants in the study. Special thanks also to Liz Kawonza for commenting on drafts and editing, and to THT staff for proofreading the final document. ii

5 Summary 1 Introduction This is a summmary of the findings of a qualitative study commissioned by Terrence Higgins Trust (THT) and Barnet Primary Care Trust (Barnet PCT). The study explored reactions to THT s HIV Prejudice and Discrimination Poster Campaign following distribution of the campaign posters through the Awaredressers network of hairdressers, barbers, shopkeepers and restaurateurs in Barnet. 2 Overview of study findings THT designed campaign posters using images from the black civil rights movement to challenge HIV discrimination in the African community. The researcher sought views about the posters from local residents, businesses displaying the posters, their customers and people with HIV. Interviews provided insight into attitudes towards people with HIV and revealed important lessons for future campaigns. The study revealed evidence that members of the public are fearful of HIV transmission through social contact, particularly the possibility of salivary transmission arising from shared tableware. This fear is driven by a perception that HIV is a fatal and incurable disease. Some people are unwilling to put themselves at risk of HIV, and yet are reluctant to reject members of the African communities who are HIV positive. Some people are keen to discover ways of overcoming their fear of HIV, but they have difficulty believing information about the safety of social contact. Despite high regard for the work of THT, reactions to the posters were dominated by mistrust of scientific advice in general and a perception that knowledge about HIV is still evolving because it is a new disease. Early HIV awareness campaign messages still resonate among the population, in particular the belief that HIV can affect anyone. This belief, together with concerns about the way in which African communities are being stigmatised because of HIV, led respondents to voice discontent regarding the poster campaign s focus on black Africans. Interventions that target African communities and involve local businesses are welcomed by African communities. iii

6 However, respondents were adamant that future poster campaigns should depict people from a range of backgrounds and not just Africans. Finally, the study found evidence that in-depth HIV awareness education and exposure to people living with HIV increases people s confidence regarding social contact with people who are HIV positive and reduces fear of salivary transmission of HIV. 3 Study background Since spring 2002, posters from THT s HIV Prejudice and Discrimination campaign have been displayed by Awaredressers volunteers on their premises. The campaign comprised three black and white posters depicting images from civil rights campaigns with bold captions about the nature of prejudice. The posters invited viewers to make comparisons between racism and HIV discrimination in order to encourage people to acknowledge and question their prejudices towards people living with HIV. Awaredressers is a community-based project managed by the Barnet Health Development and Regeneration Team within Barnet PCT. Awaredressers volunteers comprise local African businesses that have agreed to raise awareness of sexually transmitted infections and HIV and distribute condoms among their customers. 4 Research Aims The overall aim of this study was to examine the effectiveness and acceptability of the poster campaign among African communities. The study investigated how the campaign had been implemented locally in Barnet and the perceived relevance of the campaign to the African community. Interviews explored the following topics: awareness of the campaign perceptions of its purpose and message reactions to the posters the impact of the posters on beliefs about people with HIV acceptability of the campaign message the role of Awaredressers in the poster campaign and any unintended negative outcomes as a result of the campaign. 5 Research Methods The qualitative study comprised 30 in-depth interviews among: iv

7 people of African origin living in Barnet or using Barnet-based shops and services members of Barnet PCT involved in running Awaredressers African business owners that had volunteered to participate in Awaredressers (referred to as Awaredressers volunteers throughout the summary) and African people living with HIV in the Barnet area. The sample included men and women ranging in age from 19 to 60 years old. Half of the residents and customers interviewed originated from Ghana or Nigeria and included single and family households, students, employed and unemployed people and those who had and had not heard of Awaredressers. Participating businesses were mainly beauty salons, hairdressers and barbers, but also included a communications centre and grocery stores specialising in imported African and Caribbean foods, cosmetics and other goods. All participants in the study were given 20 as a sign of appreciation. Interviews were conducted with the aid of a topic guide and all interviews were tape-recorded. Content analysis of verbatim transcripts was carried out with aid of a Framework matrix. 6 Acceptance of campaign posters by Awaredressers volunteers On the whole, Awaredressers volunteers agreed to display the posters in their shops without hesitation. Factors influencing initial acceptance of the posters included: personal approach of the outreach worker well-established relationship the outreach worker had with the businesses as a result of the Awaredressers project commitment of the volunteers to Awaredressers volunteers assumption that posters were a continuation of HIV prevention and awareness raising work and excitement about images used in the posters, especially Nelson Mandela s image. 7 Refusal to display posters Althought most business owners agreed to display the posters, there were a number who did refuse to do so because of the following three reasons: weak commitment to Awaredressers and uncertainty about continued involvement reluctance to display HIV-related materials prominently near fresh meat v

8 and a view that the images used in posters did not reflect the business ethnically diverse customer base. 8 Display of posters on commercial premises The business owners were very busy, so welcomed offers made by the outreach worker to put the posters up around the shop. This was an important factor in ensuring that posters were displayed quickly and prominently. Some business owners put up the posters at a later date and others did not get around to displaying the posters at all. Some volunteers were able to place the posters in conspicuous positions in the shop, for example, facing the shop entrance, on a street-facing window or wall space or over waiting areas. Posters were less noticeable in smaller shops with limited wall and window space, most of which was already in use for existing posters and displays of goods. In addition, repeated exposure to the posters could not be relied upon because over a short period of time, the posters could become obscured by new information or displays, or were given away to customers. 9 Views on the images used in the posters The Prejudice can change (Mandela image) poster was the most popular poster of the three. Nelson Mandela s image stirred deep emotions and had a strong impact on respondents. Nelson Mandela was said to be associated with respect, freedom, unity and equality, thus regarded as a positive role model for the communities and a symbol of hope for the future. The Prejudice is rooted in ignorance (demonstration image) poster was popular because it depicted many people in support of equal rights. However, some respondents did not understand why a picture of a demonstration was being used in an HIV prejudice campaign. They wanted to know what the rally was about and where the march was taking place. This poster generated concerns and negative comments about focus on black faces in the posters (see summary section 17). The Prejudice can divide a community (separate sinks image) poster was popular among respondents that agreed that people living with HIV should not be discriminated against. Other people found the image confusing, irrelevant and negative, mainly because the image was associated with past history and American events. Some simply did not understand the picture and wanted to vi

9 know what the pictures and caption meant. Some Awaredressers volunteers did not feel such a negative image was appropriate for their shops. 10 Understanding of poster messages People interpreted poster message in three ways: One group thought the posters were something to do with racial prejudice and equal opportunities. Only on further investigation did this group realise that the posters were about an HIV-related topic. Once people realised the posters were about HIV they tended to assume that the posters were raising awareness in general about HIV. They assumed that the posters were repeating familiar safer sex messages. They did not understand the meaning of the poster messages until they were encouraged to read all the text slowly during interviews. A third group of people immediately made a link between the fight for racial equality and challenging prejudice against people living with HIV. Others became aware of this message after being given time to read the posters in detail. The image of Nelson Mandela appeared to be the most likely to encourage people to link racial equality and rights of people living with HIV. The posters antidiscrimination message tended to be regarded as a call for the public to love and care for people with HIV. 11 Perceptions of Terrence Higgins Trust Respondents were aware of Terrence Higgins Trust (THT) and associated the organisation with HIV related issues. They noticed THT s logo but suggested that THT s phone number on the posters be made more prominent and stand out more. Terrence Higgins Trust was regarded as an important source of advice about HIV and highly regarded by those respondents who mentioned THT s work. 12 Evidence of the need for an HIV Prejudice and Discrimination Campaign Business volunteers support for the Awaredressers project and the poster campaign was grounded in a belief that public awareness of HIV was poor and interventions were required to encourage people to talk more freely about subjects such as HIV. Businesses were mainly motivated by a desire to prevent HIV, but some revealed their concerns about prejudice towards people with HIV and felt there was a need to educate the public about HIV transmission. Respondents, both customers and business owners, believed it was likely for people with HIV to be isolated. A number vii

10 of these respondents admitted that they would be afraid of telling people if they discovered they were HIV positive themselves. Accounts of people living with HIV further demonstrated the devastating impact of HIV discrimination. These respondents bravely recounted traumatic experiences of rejection by families and employers following disclosure of HIV diagnosis. In some cases, rejection had occurred because of fears about transmission and still others had been berated for supposed promiscuity. In addition, people living with HIV revealed they had experienced discrimination that was not HIV-related, for example problems accessing services and financial assistance. Some pointed out that concern about HIV discrimination was not the only reason for non-disclosure of their HIV status. They wanted to feel more in control of their lives before revealing information about their health to their family, and did not want to be treated as if they were ill or about to die. Keeping their HIV status a secret was very stressful for some respondents: fear of accidental disclosure and adverse public reactions left some not feeling confident when seeking advice for themselves and their children if they were HIV positive too. 13 Reactions to the anti-discrimination message There was widespread agreement among respondents that it was important to treat people living with HIV equally. However, respondents admitted that they had many worries about the possibility of HIV transmission via social contact with a person living with HIV. Furthermore, respondents disagreed with the suggestion that reluctance to have contact with people who were HIV positive was due to prejudice. They explained that such reluctance arose from fear of HIV. None of the respondents expressing such fears knew people with HIV. Their fear was informed by: viewing HIV as a deadly, shameful and incurable disease with a high risk of infection mistrust of information stating that HIV infection could not be contracted or passed on through social contact because of: - tendencies to regard medical advice as inconsistent and unreliable - and viewing medical knowledge of HIV as weak because scientists are unable to account for the cause of HIV or provide a cure. 14 Impact of fear of HIV on attitudes towards people living with HIV Among those expressing fears about HIV transmission via social contact, there were a range of reactions regarding the prospect of contact with people who were HIV viii

11 positive. Awaredressers volunteers, customers and other residents expressed these views. Reactions ranged from individuals who felt torn between a desire to treat people equally and yet had real fear of infection, to people reluctant to have any contact with anyone who was HIV positive. Despite the presence of deep-rooted fears regarding HIV transmission, an unwillingness to have any form of contact with people living with HIV was rare among respondents: Fear of HIV limited to some forms of contact these respondents agreed with the message in the posters that scientifically HIV could not be transmitted through social contact and would happily advise other people to this effect. They believed in the importance of treating people with HIV equally, and would maintain most forms of social contact. However, their fear of HIV prevented them from feeling comfortable about sharing food or drink with someone who was HIV positive. Willingness to overcome fear of HIV a second group of respondents believed if they subsequently discovered a friend or relative was HIV positive, they would have to find a way of overcoming their fears and would maintain all types of social contact with that person. Desire to learn more about HIV a third group expressed concerns about some forms of interactions with people who were HIV positive, but expressed a desire to learn more about HIV transmission and how to treat people living with HIV. Reluctance to have contact with people living with HIV a final group were adamant that they would not have any contact with someone who was HIV positive. 15 Changing perceptions of HIV transmission There was strong evidence that in-depth education had an impact on the public s attitudes towards contact with people who were HIV positive. Respondents who were happy about social contact with HIV positive people had all received in-depth education or exposure to people living with HIV. These respondents listed the following as key factors in the development of their knowledge of HIV: HIV awareness courses; caring for someone with HIV; campaigns in the home country; activities of high profile personalities (mainly Princess Diana and Magic Johnson); positive speakers; and voluntary work. In addition, some Awaredressers volunteers felt that their attitudes towards HIV had changed following involvement in the Awaredressers project. They had read the leaflets supplied for their customers and felt that they had learnt more about the disease as a result. ix

12 16 Impact of THT s poster campaign on attitudes Fear of transmission of HIV dominated reactions to the campaign message. Although men and women who agreed that it was wrong to discriminate against people with HIV found the campaign appealing, they still had difficulty overcoming their own fear of the disease. The possibility of salivary transmission through social contact was an aspect of HIV transmission that many respondents continued to be uncomfortable and unsure of. Whilst the posters did not change the views of these respondents, they did feel the posters were a reminder of the main issues. In addition, Awaredressers volunteers pointed out that the posters were useful in providing them with opportunities to discuss HIV with customers. In this way, the posters increased the number of occasions for discussion of HIV in the community. 17 Views about targeting black Africans with HIV awareness campaigns Health interventions that targeted African communities and involved local businesses were very welcome, but few people were happy with black Africans being the sole communities depicted in posters. Africans living in the UK were not regarded as being at greater risk of HIV than any other member of the general population. Some respondents were aware that the epidemiology of HIV in the UK had revealed a disproportionate number of new HIV diagnoses among UK African residents. They still maintained the focus on Africans in the posters was inappropriate. Respondents were adamant that publicity about HIV should include different types of people rather than focus on one community. Discontent regarding the focus on Africans was informed by the following views: the HIV epidemic affects everyone regardless of ethnic origins and anyone could become infected with HIV people from different backgrounds mix with each other sexually and in marriage the public might be misled into believing that only the black population was at risk and concern that Africans are being stigmatised around HIV and blamed for HIV s origins. 18 Future poster campaigns Respondents wanted future publicity about HIV to include different groups of people rather than focusing on one community. Despite reservations about the focus on Africans in the posters, the idea of a poster campaign was well received by respondents and businesses were happy to display posters in future. Respondents pointed out that role models did not have to be African, and people such as David x

13 Beckham with universal appeal and might be better known than Nelson Mandela among young people. Respondents identified places that they thought would benefit from the distribution of information about HIV. These suggestions were made in relation to HIV in general rather than specifically to THT s HIV Prejudice and Discrimination campaign. Many suggestions focussed on places frequented by young people, for example, colleges, bus stops, sports shops, shopping centres and schools. There were suggestions of places that caught passing trade (e.g. buses, London underground, waiting rooms, libraries, shops and supermarkets) rather than events that people made specific plans to attend. Most people agreed that the public and business people did not always have time to attend meetings or seminars to get up-to-date information on health issues. 19 HIV-related information needs Respondents wanted to hear more about the views and experiences of HIV positive people and asked for their viewpoints to be included in leaflets. They requested that more data about HIV prevalence be made available in HIV leaflets. Respondents also wanted more information about the following aspects of HIV: what happens if you get the disease; how you can get it; how it started out in the first place; how it will affect you if you get it; how the immune system is affected; and what sort of help you can get following diagnosis. Respondents wanted to see more information and discussion about HIV on television in the UK, for example documentaries or stories about high profile people living with HIV. However, respondents did not want such publicity to be at the expense of other health issues and emphasised that information about other diseases, for example diabetes and heart conditions should be promoted as well. Overall, respondents agreed that information about HIV still had to be spread and that You have to keep on saying, keep on talking until everybody has the message. xi

14 Foreword Terrence Higgins Trust s HIV Prejudice and Discrimination Poster Campaign Liz Kawonza, Head of African Services Development, Terrence Higgins Trust December 2003 Introduction Figures from the Public Health Laboratory Service continue to show an increase in HIV seroprevalence in African communities in the UK, especially within the Southern and South Eastern African communities. Latest surveillance data shows that of the new diagnoses ascribed to heterosexual transmission in 2001, 71% were in people from Africa or who had acquired their infection there 1. Through analysis of these figures and our experience of direct contact with African people using Terrence Higgins Trust (THT) services and the African Information Line, the African Health Promotion team identified four key themes regarding HIV transmission and stigma: African communities are the second largest group affected by and living with HIV in the UK. HIV prejudice and fear of discrimination have been identified as being significant influencing factors in African people s decisions to test or not to test for HIV. Many African people living in the UK ignore messages about HIV or choose not to know their HIV status for fear of discrimination and prejudice in the event they test HIV positive. HIV stigma continues to be identified as being an important issue within African communities. It is extremely difficult for many African people with HIV who find themselves being rejected by medical and social services to get support from their families regarding their HIV status. Many African people come from countries where HIV is seen as a condition for which medical care is not a priority and having to face the same reaction in the UK can be very difficult. Many African people therefore would prefer not to know even if they suspect they could be HIV positive. This often results in late presentation of HIV through Accident and Emergency services, requiring intensive care treatment which overall is more expensive. 1 HIV and AIDS in the UK: An update, November 2002: Communicable Disease Surveillance Centre, Public Health Laboratory Service: London. 1

15 Complex issues relating to promoting HIV testing have been identified through our work developing the knowledge of status campaign. There are serious concerns within African communities regarding people being offered HIV testing when they do not qualify for medical care. Compared to people who test early and live well and sometimes do not need treatment, many African people living with HIV in the UK find out they have HIV when they become very ill or develop serious infections. In most cases it means they do not benefit from new HIV treatment or they have to stay in hospital for treatment for longer periods compared to gay men. HIV is now a manageable condition: it is unacceptable that some African people with HIV are still dying in the UK because of late presentation. Clinicians within various London specialist HIV centres have expressed concerns regarding the availability of resources to meet increased need in the event of a successful knowledge of HIV status campaign. They are concerned these issues have not been adequately addressed in the Government s National Strategy for Sexual Health and HIV. On balance it was easy to acknowledge these concerns as important but difficult to provide solutions to them. Inadequate resources are a factor exacerbating late presentation, limiting prevention and health promotion and potentially undoing the gains from previous primary HIV prevention work. It is hoped that commissioners would take this as a serious issue for African communities. Terrence Higgins Trust s African Health Promotion Staff THT s African Health Promotion staff have been involved in organising and developing resources for African communities since The poster campaign resources were developed in conjunction with African communities, and people living with and affected by HIV using focus groups, individual consultation, and skills of THT s African staff and other African HIV and health promotion staff in both the statutory and voluntary sector. This was aimed at maximising opportunities for the involvement of African people to provide correct, acceptable and appropriate information for affected communities. This campaign was developed in collaboration with African people. The team provides significant community support to community organisations and statutory service providers. Our aim is to ensure there is consistency in health promotion and HIV prevention approaches as well as in language and messages 2

16 given. Over the years, we believe the team has developed high levels of health promotion skills, which we continue to share through partnership working. Terrence Higgins Trust s HIV Prejudice and Discrimination poster campaign The overall aim of the HIV Prejudice Campaign was to challenge individual and community responses and attitudes to HIV and ensure that people with HIV are seen as part of our communities and are supported. We wanted the campaign to encourage more African people to go for HIV testing early, reduce the risk of HIV infection, delay the onset of advanced HIV disease and the need for HIV treatment and enable HIV positive people to benefit from available treatment and care if needed. It was also intended to direct individuals within African communities to sources of appropriate support. The campaign used familiar images of separation and discrimination that aimed to encourage individuals to question prejudice against people living with HIV at a personal and community level in the same way that we would question racial prejudice. Terrence Higgins Trust s African Health Promotion Team, in collaboration with statutory and community-based health promotion staff, have in the last four years identified social settings as important venues for distributing sensitive health information. Posters were placed in venues where African people socialise regularly to ensure messages were received in a safe environment and reached as many African people as possible. Community-based staff across the HIV sector have over the years developed relationships with business proprietors and built up acceptance and willingness among businesses to display health information. In some London settings this relationship has involved investing in the businesses visibility by including businesses names on health training programmes and providing training on health matters for the business owners. The Awaredressers project is an example of such an initiative. However most such schemes are still in their infancy even in areas where they have operated for several years and need further support and development. 3

17 The Availability of space to display materials and visual prominence, as well as the rotation of health information are important considerations when working with small businesses. It is also important to agree a time limit for displaying health information to facilitate its active promotion and discussion within African community organisations, business communities, churches, and venue owners in the various centres during the campaign or evaluation period. This was the first ever campaign of this kind in the UK. We believe themes used in the campaign could be adopted across Europe, USA, the rest of the developed countries and in Africa too. We tested the drafts at various stages of development with African people and the response was overwhelmingly positive. We were confident the campaign would be effective in calling African communities to question attitudes towards people with HIV and providing some appropriate ways of addressing HIV prejudice. We hoped the research would provide insight into issues to be addressed in future HIV and health promotion campaigns, the presentation of messages, the prominence of information and the appropriateness of using poster campaigns in community settings to address health issues. Liz Kawonza Head of African Services Development, Terrence Higgins Trust December

18 1 Study background and methods 1.1 Introduction This report describes the findings of a qualitative study commissioned by Terrence Higgins Trust (THT) and Barnet Primary Care Trust (Barnet PCT) to evaluate Terrence Higgins Trust s HIV Prejudice and Discrimination Poster Campaign following distribution of campaign posters through the Awaredressers network of hairdressers, barbers, shopkeepers and restaurateurs in Barnet. This report sets out the background to the study, its aims, the research methods used and the findings of the study. 1.2 Study background THT s HIV Prejudice and Discrimination Poster Campaign In February 2001, Terrence Higgins Trust launched its HIV Prejudice and Discrimination campaign. The campaign aimed to challenge the stigma associated with HIV and AIDS among African communities in the UK. The campaign comprised three black and white posters depicting images from civil rights campaigns with bold captions about the nature of prejudice. The posters invited viewers to make comparisons between racism and attitudes towards people with HIV in order to encourage people to acknowledge and question their prejudices towards people living with HIV. A description of the campaign is provided by THT in the Foreword of this report and in Figure 1 at the end of Section 1.2. Copies of the posters are reproduced on page 7. Awaredressers in Barnet Since 2001 the posters have appeared in publications read by black Africans and have been distributed among individuals and organisations used by African people. One of the participating organisations is the Awaredressers project. This is a community-based project managed by the Barnet Health Development and Regeneration Team within Barnet PCT. The project comprises a health promotion team working directly with Barnet-based African business volunteers to raise awareness of sexually transmitted infections (STIs) and HIV among the African population living in Barnet. Awaredressers volunteers include local hairdressers, 5

19 barbers, grocery stores, international telecommunication centres and restaurants. Participating business volunteers display sexual health information and resources on their premises and distribute condoms free of charge to customers. During March and April 2002, THT s HIV Prejudice and Discrimination campaign posters were distributed among these businesses for display on their premises. Figure 1 Description of THT s HIV Prejudice and Discrimination Poster Campaign What is the campaign? A series of three black and white posters. Who is the campaign aimed at? African people living in the UK. HIV positive and negative people. Why this type of campaign? Prejudice against people with HIV exists. Fear of discrimination affects individual responses to getting health care. Where should posters be distributed and why? Social venues frequented by Africans. To ensure African people see the messages, and consider and question their attitudes in a safe environment. Which venues? Barbers, churches, embassies, hairdressers, food outlets, minicab offices, clubs and wine bars. What is the campaign saying? People with HIV are people. HIV cannot be passed on through everyday contact. People with HIV are discriminated against. Could you be prejudiced against people with HIV? Prejudice can change. Where you can get more information. What is the campaign not about? Not about safer sex. Not a comment on culture. Not asking negative people to be nice to people with HIV. What to do if you need more information about the campaign? Call Liz Kawonza at THT on

20 Examples of the HIV Discrimination Posters 7

21 1.3 Research aims The overall aim of this study was to examine the effectiveness and acceptability of the poster campaign; how the campaign had been implemented locally in Barnet; and the perceived relevance of the campaign. Interviews explored: awareness of the campaign perceptions of its purpose and message reactions to the posters the impact of the posters acceptability of the campaign message the role of Awaredressers in the poster campaign and any unintended negative outcomes as a result of the campaign. These issues were explored among four groups of people: people living in Barnet or using Barnet-based shops and services members of Barnet PCT involved in running Awaredressers business owners that had volunteered to participate in Awaredressers (referred to as Awaredressers volunteers throughout the report) and people living with HIV in the Barnet area. 1.4 Research methods Qualitative research Qualitative research methods were used to carry out the study. Qualitative research is well suited to unpacking people's attitudes and the belief systems that underpin them. In-depth interviews were carried out with participants, given the sensitive nature of the subject. The study comprised 30 in-depth interviews among Barnet residents, people living with HIV, Awaredressers volunteers and their customers. In addition, visits were made with the outreach worker to all of the Awaredressers businesses approached to take the posters (total, fifteen). During visits, observations were made regarding reactions to the posters, their placement in the shops, and the presence of other materials distributed by Awaredressers in the shops. Selection of participants Awaredressers volunteers were selected from those businesses that were approached to display posters during Spring Customers of Awaredressers 8

22 businesses and people who shopped in the areas served by Awaredressers businesses were recruited with the help of the business owners, who distributed letters to customers inviting them to take part in the study. Customers then either contacted the researcher directly, or left their contact details with the shop owner to forward to the researcher. Further participants were selected by a recruiter who approached members of the public outside the participating businesses in the Burnt Oak and Edgware Road areas. In addition, interviews were conducted among Barnet residents living with HIV, recruited with the assistance of local community agencies. Sample In total, 30 people were interviewed. The sample of residents and customers included men and women ranging in age from 19 to 60 years old. Half of the residents and customers interviewed originated from Ghana or Nigeria, reflecting the background of the African businesses and population in Barnet. Figure 2 Respondent group Sample profile Number of respondents Awaredressers customers (includes Barnet residents and non-residents) 7 Barnet residents (not aware of Awaredressers) 7 Awaredressers volunteers 9 People living with HIV 4 Awaredressers team 3 Total 30 Residents included single and family households, students, employed and unemployed people and those who had and had not heard of Awaredressers. Participating businesses were mainly beauty salons, hairdressers and barbers, but also included a communications centre and grocery stores specialising in imported African and Caribbean foods, cosmetics and other goods. Nearly all of the business respondents were women and were aged from their late twenties upwards. Details of the sample and approach letter are included in the appendices. Conduct of the study Interviews with Awaredressers volunteers took place on their business premises and those with residents and customers took place in their homes, at business premises 9

23 or community organisations. Everyone participating in the study was given 20 as a sign of appreciation of their time and contributions. The interviews were conducted with the aid of a topic guide (see appendices for copy) and all interviews were taperecorded. Content analysis of the verbatim transcripts was carried out with the aid of Framework, a matrix used to organise interview data under thematic headings. The data is then interrogated and analysed at descriptive and explanatory levels. Where verbatim quotations have been used in this report, respondent characteristics have been changed in order to ensure anonymity. 1.5 Report structure The report starts by describing the distribution of the posters and initial reactions to the campaign among Awaredressers volunteers. Chapter 3 then discusses people s perceptions and understanding of the individual posters. Chapter 4 explores the impact of THT s HIV Prejudice and Discrimination campaign posters and perceptions of people living with HIV. Chapter 5 addresses reactions to the campaign s focus on African communities and Chapter 6 ends with suggestions for future work. 10

24 2 Distribution of THT s HIV Prejudice and Discrimination Campaign posters 2.1 Distribution of the posters The posters were distributed to local businesses already participating in Awaredressers in Barnet. The businesses approached to take posters included specialist African and Caribbean hairdressing businesses, for example men s barbers, women s hairdressers and salons offering both women s and men s hair dressing and nail treatments. Grocery stores specialising in African and Caribbean imported food and cosmetic products were approached along with a communications centre and an African restaurant. The posters were distributed in person by the Awaredressers outreach worker during her regular visits to the businesses to replenish supplies of condoms and leaflets. The outreach worker chatted informally with the businesses and then showed the owner, or owners, the posters, inviting opinions and asking if the owner could display the posters on their premises. During these encounters, there was little time to discuss the posters in depth. The business owners were very busy. Conversations were interrupted by a steady flow of customers, phone calls and stock deliveries. Many premises were small, so it was difficult to have a conversation with the business owner without restricting access to the shop counter for customers. Consequently, the exchange of information about the posters was brief and decisions to accept the posters were made quickly on the spot. The posters were presented as a set of three, but businesses tended to choose one or two posters from the set to display in their shop. Their preferences were informed by initial reactions to the images; the image of Nelson Mandela was usually commented on and was the most popular among Awaredressers volunteers. Section 3.1 describes in more detail the reactions to each of the posters. 11

25 2.2 Acceptance of the posters by Awaredressers businesses Factors influencing acceptance of the posters The outreach worker s personal approach and well-established relationship with the businesses as a result of the Awaredressers project was influential during distribution of the posters. Awaredressers volunteers clearly trusted the outreach worker. The Awaredressers outreach team had worked hard for several years to build the network of Awaredressers volunteers. They enlisted the support of local businesses for the Awaredressers project by making several visits to the business to purchase goods before broaching the subject of volunteering for Awaredressers. The outreach team then spent time listening to volunteers ideas rather than attempting to provide all the answers or impose their own agenda. I physically went to their premises and introduced myself and told them about the type of job I am doing and how I think they might be able to help distribute condoms. I think I bought quite a few things I did not need to buy, just to pave the way, to talk to the shopkeepers. So really I think we established some sort of rapport well before I actually took any condoms in. (Awaredressers team member) When they see the seriousness and the effort you re making, I think they take it on board. (Awaredressers team member) Factors influencing acceptance of the posters are summarised in Figure 3 below. Figure 3 Factors influencing acceptability of the posters Commitment to Awaredressers Trust in the outreach worker Desire to educate the public HIV regarded as an important subject Impact of the poster imagery Emotional reaction to the image of Nelson Mandela Posters not read in detail Perception that posters are about the dangers of HIV; warning people to be careful Suitability Nelson Mandela is considered to be popular with everyone Posters are regarded as a continuation of existing leaflet displays Images draw attention to the shop The volunteers accepted the posters without question and agreed to have them displayed in their shops without hesitation. Acceptance of the posters was informed 12

26 by the volunteers commitment to Awaredressers. Awaredressers businesses were involved in the Awaredressers project because they felt HIV was an important issue, mainly because they regarded HIV as a serious, deadly disease that the public, especially young people, was not sufficiently aware of. The volunteers saw their role as supporting attempts to prevent HIV by raising public awareness. They assumed that the posters were a continuation of their HIV prevention work. He [Nelson Mandela] is just telling us to be more aware and be more careful. (Female, Awaredressers volunteer) In addition, business owners expressed excitement about the posters, especially the image of Nelson Mandela. They regarded Nelson Mandela s picture as a positive image that would be well received by their customers. Reasons for refusal to display posters Refusal to display the posters was rare and arose in three contexts, summarised in the figure below. Figure 4 Factors influencing refusal to display posters Weak commitment to Awaredressers Posters regarded as unsuitable for type of business Images used in posters were not felt to reflect customer base One factor that led to refusal was the owner s uncertainty or reluctance to continue involvement in Awaredressers. The business owner did not look at the posters and was only willing to discuss issues that affected their involvement in Awaredressers. The second factor concerned the owners perceptions of the suitability of the posters for their type on business. In one case, a business selling fresh meat, the owner did not welcome the presence of HIV-related material in close proximity to the meat. This business owner was content to display leaflets on a stand in the shop, but felt that the posters made the subject of HIV too prominent and would be detrimental to the business. There was also a reluctance to display posters with non-commercial messages or with what was regarded as a political style. Others commented that negative images, for example the image of separate sinks in the segregation poster, were unsuitable in a commercial setting because they would not help draw customers into the shop or add to the positive experience of using the business. 13

27 Finally, the posters were rejected because the images used were regarded as inappropriate among business owners that provided services used by African and non-african customers. The posters were criticised for only showing black faces and business owners were concerned that such images would alienate their diverse customer base. Many businesses, for example hairdressers and grocery stores, pointed out that their customers included African, Caribbean, white, Asian and Chinese customers, some of whom travelled from outside Barnet to use the service. There was a view that customers might think we are being racist if imagery was used that did not reflect the customer base. Maybe with the hair [dressing] I get more of the black than the white [customers] but with the nails I get more white than black [customers] coming in here. It would be better if they [the posters] had more white and black rather than just black [people]. (Awaredressers volunteer) The imagery used in the posters is discussed in greater depth in Chapter Display of the posters in local businesses The outreach worker usually took responsibility for putting the posters up. The owners, as already mentioned, were very busy, so welcomed offers made by the outreach worker to put the posters up around the shop. This was an important factor in ensuring that the posters were displayed quickly and prominently. Some owners put the posters up at a later date and others did not get around to displaying the posters at all. Sites for the posters varied. Wall and window space tended to be limited on the premises. Many businesses had little space to display their goods and already had numerous posters advertising services and cultural events. Some volunteers, willing to display the posters, had no obvious wall or window space available for the display of the A2 posters. Examples of places where businesses displayed posters include: a restaurant window; the side of a fridge used to display soft drinks; the interior walls of telephone booths in a communication centre; wall space; pillars; and next to mirrors in hairdressers. With the exception of the communications centre, owners displayed one or two posters on their premises rather than the entire set of posters at once. 14

28 2.4 Awareness of the posters among customers During the interviews, Barnet residents and Awaredressers customers were shown the three THT HIV Prejudice and Discrimination Campaign posters and were asked whether they had seen any of the posters in local shops. About half of the respondents had seen the posters, some in local shops. Some respondents, despite shopping in areas served by several Awaredressers businesses, had not seen the posters before. A factor contributing to low awareness of the posters present among some customers was the nature of the business premises and the interactions that took place in them. As mentioned before, the posters tended to be competing with other information in the small shops. With the exception of the barbers, hairdressers and communication centres, interactions in the shop tended to be brief and focussed on buying specific goods or talking to the owner. Browsing activity was minimal. Furthermore, repeated exposure to the posters could not be relied upon because over a short period of time, the posters became damaged, obscured by new information or displays of goods, or were given away to customers. 15

29 3 Reactions to individual THT HIV Prejudice and Discrimination Campaign posters 3.1 Impact of images used in the posters This section describes respondents reactions to the posters. The views of businesses, customers and residents are presented here. Respondents were shown all three posters and given time to look at them. The posters were intended as a sequence, beginning with the Prejudice is rooted in ignorance then Prejudice can divide a community posters and ending with the Prejudice can change poster. Few respondents were able to identify the sequence. One man who did make a link between the posters felt that the Ignorance can divide a community poster and the Fortunately prejudice can change version were contrasting two periods in time: This [ prejudice can divide ] is showing a very difficult day and this [prejudice can change] is showing a very hopeful day (Male age 35 to 44 years) Respondents tended to compare the posters rather than regard them as a sequence, therefore reactions to each of the posters have been described individually. Prejudice can change (Mandela image) poster This was the most popular poster of the three. The image of Nelson Mandela had a strong impact on respondents, grabbing people s attention and stirring deep emotions. I love this because he is my hero. (Awaredressers volunteer) Mandela is a unique man when I see this poster I say, yes, this can really make a change because I believe when one sees this face, then one can say yes, he represents faith, represents peace, he represents love we can do things together HIV can be beaten. (Awaredressers volunteer) Nelson Mandela was associated with respect, freedom, unity and equality, and thus regarded as a positive role model for the community and a symbol of hope for the future. Positive features of the poster are summarised below: 16

30 Figure 5 Positive features of Prejudice can change / Mandela poster The image of Nelson Mandela was very popular and instantly recognised by all Nelson Mandela represents black people and equality, so, because he is a recognised figure, you will read on. (Female age 25 to 34 years) The image of Nelson Mandela created a good feeling He is equated with love, respect, equality, unity, harmony, peace and freedom he s a freedom fighter for justice, for equality. He has been a symbol for equality for a very, very long time. (Male age 35 to 44 years) By his lifetime actions and demeanour, he is telling people to love one another His life is a symbol of hope That there is hope He was imprisoned, but things have changed so prejudices can change. (Male age 35 to 44 years) Mandela is a strong man and a believer (Respondent living with HIV) In some cases, respondents drew links between the image of Nelson Mandela and HIV. For example, the image was a reminder that HIV is a problem in South Africa. Another respondent wondered if Nelson Mandela was HIV positive. Prejudice is rooted in ignorance (demonstration image) poster Although the poster with the Nelson Mandela image was very popular, some preferred the image of the demonstration. These respondents felt this poster addressed the issue of prejudice more effectively because there were many people in the picture in support of equal rights, rather than just one person. However, unlike the Mandela poster, there was evidence of confusion about the images used in this poster. Some respondents did not understand why a picture of a demonstration was being displayed. They wanted to know what the rally was about and where the march was taking place. It was this poster that generated concerns and negative comments about the focus on black faces in the posters. Such comments were also made about the poster series as a whole and are discussed in Chapter 5. Prejudice can divide a community (separate sinks) poster The respondents who liked this poster tended to be those that agreed that people living with HIV should not discriminated against. The image of separate sinks for white and coloured people was regarded as a useful reminder that such things really did happen and people were not treated equally. (Female, age 18 to 24 17

31 years). Another, older respondent, thought the image referred to apartheid in South Africa. This is segregation, just like was happening in South Africa but it looks like they want to point out that there should not be any prejudice against HIV positive people. (Male age 35 to 44 years) Others found the image confusing, irrelevant and negative. The image was regarded as irrelevant because it was associated with past history and American events. Respondents commented that they found it difficult to relate to an image that referred to an era that they no experience of. Some simply did not understand the picture and wanted to know more about what the pictures and caption meant. They asked questions about the picture, for example What does that white and coloured mean or Is someone with HIV being sick, and found it difficult to understand the poster overall. Others regarded the image as very negative, recalling a dark period in history. Some Awaredressers volunteers did not feel such a negative image was appropriate for their shops. 3.2 Understanding of the message of the posters People interpreted the message of the posters in three ways: Something to do with racial prejudice and equal opportunities; Promoting safer sex or raising awareness in general about HIV; or Promoting the rights of people with HIV and reminding the public to love each other. These three interpretations are discussed in more detail below. Racial prejudice One group, at first glance, thought the posters were associated with racial prejudice or equal rights in general. Something to do with racism or equal opportunities or something like that. (Female age 18 to 24 years). Only on further investigation did this group realise that the posters were about an HIV-related topic. An Awaredressers volunteer commented that her customers initially thought that the posters were about unity, for colour and rights in the 18

32 workplace until she explained the posters and encouraged her customers to read further. Promoting safer sex or warning about dangers of HIV Once people realised the posters were about HIV, they tended to assume that the posters were raising awareness in general about HIV, promoting safer sex or telling young people not to do something bad. Respondents interpreting the posters in this way included Awaredressers business volunteers and members of the public. They assumed that the posters were repeating familiar safer sex messages and information about HIV. They did not become aware of the anti-discrimination message of the posters until they were encouraged to read all of the text slowly during the interview. Promoting the rights of people with HIV A third group of people immediately made a link between the fight for racial equality and challenging prejudice against people living with HIV. Others became aware of this message after being given time to read the posters in detail. Of the images used in the three posters, that of Nelson Mandela was the one that was most likely to encourage people to make a link between racial equality, unity and the rights of people living with HIV. That s why they put his picture in cos he s a man that s been fighting prejudice for years He s saying that HIV can t be passed on by drinking with someone (Male age 18 to 24 years) It s saying lets go out there and support them. They need love and support from family and friends and the whole community. (Respondent living with HIV) This group of respondents felt that the messages in the posters were true, that the scientists were telling us that you can t easily catch it [HIV] and that the public should be encouraged to treat those living with HIV equally. We don t have to be scared of them but be able to help them. (Female, Awaredressers volunteer) It s about discrimination and somebody with HIV Like some people are ignorant towards somebody that s the opposite colour. (Female age 25 to 34 years) 19

33 Well it s basically trying to tell people that you are not going to get HIV or AIDS necessarily by siting with a person with HIV or using the toilet or even the same cutlery although I know people that would be scared to do that. (Awaredressers volunteer) There was a tendency for respondents to regard the posters anti-discrimination message as a call for the public to love and care for people with HIV. It brings peace and love to people who have this disease and [asks us] to help them in any way that we can. (Awaredressers volunteer) We are parents, children and members of our community. Like any person is. They need love and support from their community. (Respondent living with HIV) You can t just throw them away because they have HIV. They re your people so you have to cuddle them, give them encouragement and talk to them. (Awaredressers volunteer) A wider interpretation was made by one woman who thought the How long will people with HIV have to wait slogan in the Prejudice can change poster referred to the wait for treatment to be made available to people living in Africa and the wait for a cure. 3.3 Perceptions of Terrence Higgins Trust Some respondents were aware of Terrence Higgins Trust (THT) and associated the organisation with HIV related issues. They recognised THT s logo but suggested that THT s phone number should stand out more on the posters. Terrence Higgins Trust was regarded as an important source of advice about HIV and highly regarded by those respondents who mentioned THT s work. 20

34 4 Views about THT s HIV Prejudice and Discrimination Poster Campaign 4.1 Evidence of need for an HIV Prejudice and Discrimination Campaign Business volunteers support for the Awaredressers project was grounded in a belief that public awareness of HIV was poor and targeted interventions were required to encourage people to talk more freely about subjects such as HIV. Businesses owners were mainly motivated by a desire to prevent HIV, but some revealed their concerns about prejudice towards people with HIV and a need to educate the public about HIV transmission. Respondents, both customers and businesses, believed it was likely that people with HIV would feel isolated. A number of these respondents admitted they would be afraid of telling people if they discovered they were HIV positive themselves. The Awaredressers volunteers felt the public still had many fears about HIV transmission and were scared of contact with people known to be HIV positive. Some of these respondents went on to explain that they too shared such fears. People living with HIV also agreed that people still don t know how HIV is transmitted and that s why it all comes back to awareness...the stigma is still there. Accounts of people living with HIV further demonstrated the impact of discrimination. Some respondents bravely recounted traumatic experiences of rejection by their families and employers following their HIV diagnosis. Others discussed experiences of toilet seats or cups being washed after they had used them. Those who had not experienced discrimination had rarely disclosed their status outside carefully selected family members or HIV support groups. Others were careful to educate people about HIV before they revealed their HIV status to them. The following is one respondent s account of what happened soon after being diagnosed with HIV. The account demonstrates the impact prejudice can have. I could not control my tears. I was crying. The lady [respondent s employer] asked me: What s wrong? and I said: They ve told me that I ve got cancer. That s what I told her. My eyes were full of tears. I was so confused. Then the lady said: OK, you can go home. So I went home. The next day I went to work. I did all of my work and then my employers came to me and said: Unless your doctor writes to us and tells us what you are suffering from, then we cannot keep you here. That was my first job when I came to the UK, it was like a family to me. I thought I had found a family and 21

35 that they liked me I went to see my GP and my GP said: You know that if you open the door, you will close it [the GP wrote a letter at the respondent s insistence, advising that a letter disclosing HIV status was unlikely to help the situation and advising against disclosure to the employers] I didn t know that I had made a mistake. I went with the letter [to my employer] and they told me: There is no job for you. (Respondent living with HIV) Not everyone had such negative experiences. The positive accounts of those diagnosed with HIV who received support from their family, friends and employers in the UK provided evidence of the importance of being able to talk freely and count on the support of others, particularly during the very stressful weeks following diagnosis. Such support was particularly valuable because these respondents had few relatives or friends in the UK. My family know I have my highs and lows they encourage me with each day that comes The more negative I am about it, the more I make myself miserable, the more I get stressed so I have to be positive in everything that I do on a daily basis (Respondent living with HIV) The accounts of people living with HIV revealed the ways in which worries about public perceptions of HIV affected decisions about disclosure of HIV status. These worries centred on concerns about how other people might react, for example mistreatment or rejection by people frightened by the perceived risk of infection. There was an expectation that people would judge them and assume that they became infected because they were promiscuous. Others did not want to be perceived as an ill person and treated differently as a result. One such respondent explained that, to avoid feeling dependent on the family, the family would not be told about the respondent s HIV status until the respondent was feeling healthier, had accommodation and had returned to employment. I m sometimes concerned by the fact that if they know, they ll be treating me different not that they will abandon me, but they ll be worrying each time I have a cold, each time I have to go to hospital. I don t want them to worry about me by the time they know I want to be independent again If I was in control of my life, either going back to college or a job, I would tell them: This is my situation. I m HIV positive, but don t worry. The doctors are looking after me, I ve got a place of my own, the treatment is working OK. Even though they ll feel bad or they ll feel sorry for me, inside, they ll be sort of pleased with the fact that everything else is working out OK for me. (Respondent living with HIV) 22

36 Respondents living with HIV were very worried about the possible negative consequences of disclosure. There was concern that disclosure could not be controlled, for example family members disclosing to other relatives without the respondent s knowledge or teachers disclosing to other parents. Some parents had the additional pressure of hiding the HIV status of their young children as well as their own status. They worried about their children being bullied or isolated as a result of disclosure to the school. Fear of accidental disclosure made respondents unconfident in seeking advice about other matters. For example, worries about the cognitive development of children were left unresolved due to the risk of disclosing the children s HIV status within the school. Another respondent did not use beauty saloons due to uncertainties about whether beauty saloons sterilised their equipment and fear of passing on HIV infection. This respondent did not feel that enquiries could be made about sterilisation without risking disclosure of HIV status. These respondents described high levels of stress and feelings of depression as a result of having to hide their HIV status, and all that went with that, for example: Hiding medication and HIV-related information at home Taking medication in secret Feeling unable to seek advice or resolve doubts due to risk of accidental exposure Depending on accommodation and/or financial assistance from relatives who were unaware of the respondent s HIV status. HIV-related discrimination was not the only form of discrimination experienced by respondents. Respondents living with HIV described difficulties accessing services, benefits and other forms of income whilst living in the UK. Some had been forced to give up employment or studies due to illness or discrimination, but had then encountered problems with their immigration status and access to welfare benefits or health treatment. It s been a roller coaster, it s not been easy. [They said to me]: You came here as a student, you can t have these facilities, you can t have access to benefits, you can t have access to income. So there s already...segregation in saying You can t do this. But in doing that they don t realise that they re making my situation worse, they re making my health worse. (Respondent living with HIV forced to give up studies following illness) 23

37 4.2 Agreement that it is wrong to discriminate against people with HIV Reactions to the message in the posters regarding discrimination were explored in depth during the interviews. There was widespread agreement among respondents that it was important to treat people living with HIV equally. Respondents felt that the posters were attempting to educate people and that in principle the message of the campaign was good : They are just people they have got a problem which is different to us, but they are normal people with children, professional members of the community, just like us it s drawing people s attention to stop prejudice against HIV... (Male age 18 to 24 years) Equal treatment of people living with HIV was regarded as important in order to help HIV positive people cope with the condition. If people don t accept you it makes life hard. (Female age 18 to 24 years) You have to love the person the same loving the person, pleasing the person, you understand, can t cure that sickness but the love in you can help them in their healing. (Awaredressers volunteer) It s about support and giving people as much love and comfort as you can, I think that s what they [people with HIV] need. Some people are different, I don t like people feeling sorry for me I have always been independent, in control of things I can t change it [HIV status] I must look at ways of carrying on with my life. (Respondent living with HIV) Respondents felt that the posters were not just providing information about transmission of HIV, but were also attempting to remind the community that people with HIV need love and support. The scientists are telling us that you can t easily catch it. So if that is the case, people have got to be educated to know that. If you know somebody who has got this disease you don t abandon that person. You have to help. You have to give them much love. (Awaredressers volunteer) 24

38 Another group of respondents went on to express agreement with the links being made between racism and discrimination in the posters. Do you want to go back to this kind of age whereby just because of your colour people will say they don t want you to touch your things and stuff like that. [By] shocking people to think, then some good will come out of it. The message is real It s about prejudice, how will you feel, this is what the message is saying. It s very hurtful [to say] just because somebody s HIV positive, that you can t touch them, you don t want to be part of them. (Male age 35 to 44 years) 4.3 Disagreement with the link between prejudice and discrimination Despite agreement with the premise that people with HIV should not be discriminated against, not all respondents were ready to agree that people with HIV were treated differently because members of the public were prejudiced towards them. These respondents did not feel that the presence of prejudice was a satisfactory explanation for people s attitudes towards HIV. There was a view among Awaredressers volunteers, customers and other Barnet residents that there were still many unanswered questions about the origins and treatment of HIV. Consequently, these respondents believed that people s opinions were not necessarily derived from prejudicial attitudes, but were due to lack of medical evidence and fear of HIV. It s not prejudice, a lot of people are just scared and wary because they don t understand Just like black people in the slavery days, the reason why people used to do it to blacks was because they never used to know anything about us They used to be scared Once they realised they re not going to catch diseases from us then they started using the same sinks. This is kind of the same thing with HIV. (Male age 18 to 24 years) Do you know the thing about HIV, what I think is, people are not prejudice they re just scared No matter the amount of reassurance you give people about how it is passed on, so long as it is a deadly disease, people will still be scared. (Awaredressers volunteer) These respondents resented the implication that reluctance to mix with people living with HIV was due to prejudice and felt strongly that people with HIV were treated differently because members of the public were afraid of the disease. These respondents felt that the consequences of HIV infection were too great to take any 25

39 risks that might lead to infection. They also noted that information about HIV was confusing. On the one hand, people felt that they had been told to be afraid of HIV, on the other, to accept people with HIV. They want people not to be prejudice against them [people living with HIV] and yet they want me to be afraid [of HIV] (Male age 25 to 34 years). Respondents that expressed agreement with the anti-discrimination message of the poster campaign revealed underlying fear of contact with people with HIV. Although they agreed that people with HIV should not be discriminated against, they did not agree that there was no risk of transmission of HIV through social contact and admitted that despite wanting to treat people equally, they would be worried about contact with people with HIV: I will be sorry if somebody is HIV positive. I will give them all the love I can give them, but I ll be cautious...because it is something, that if you catch it, then you will die. (Awaredressers volunteer) 4.4 Underlying fear of contact with people with HIV Respondents clearly had many worries about the possibility of transmission of HIV via everyday contact with a person living with HIV. None of the respondents expressing such fears had contact with people with HIV. Their fear was derived from their perception of HIV as a deadly disease and their mistrust of medical evidence. Figure 6 on the next page summarises the reasons why respondents were afraid of HIV. Figure 6 Origins of fear of people with HIV Perceptions of HIV HIV leads to isolation and shame A perception that once people know you are HIIV positive no-one wants to know you anymore or have contact with you. That HIV attracts shame because it is sexually transmitted, so people assume you didn t lead a good life. HIV is incurable HIV was described as an incurable and deadly disease. 26

40 Views about medical advice on HIV Scientist have made mistakes in the past Advice that it is safe to share living spaces, food and drink with people who are HIV positive is mistrusted in the light of misinformation in the past from medical experts, for example changes in dietary guidance over the years and controversies around MMR and BSE. Medical experts seem to know very little about the origins or treatment of HIV HIV is a new disease. Respondents wonder how experts can be trusted to know how HIV is transmitted when they seem know so little about other aspects of HIV. Respondents feel that they are being experimented on. The most persistent belief regarding HIV was that it was a deadly disease with no cure. Respondents of all ages and backgrounds expressed this view. Respondents had heard this idea from other people, TV and radio. Respondents felt that HIV was worse than other diseases because it did not have a cure, so for enjoyment of less than three minutes you are in trouble for life. Among HIV positive respondents, there was evidence that they had not been aware of the longevity of people with HIV until they had been diagnosed and had begun to read HIV-related information for themselves, for example stories written by other people living with HIV in the Positive Nation magazine. I never had any idea that a person can live for 10 or 15 years with HIV. I only thought that it was maybe two or three years and you re dead When I phone back home they get worried. To them it s death already, you re dying but I always try and explain to people that s not it. (Respondent living with HIV) If you have it, it s like you are doomed so people think if you have it you are dead, so people will have that [idea] in their mind. (Awaredressers volunteer) People look at HIV like you re dying tomorrow Nobody knows when they are going to die. I might live longer than somebody that s HIV negative, so nobody knows when they are going to die. (Respondent living with HIV) When respondents weighed up what they knew about HIV, the consequences of infection seemed too great and the certainty of medical evidence appeared too weak to permit respondents to feel confident about social contact with people who were HIV positive. 27

41 I m wrong [because] it s like I m not being fair to them, but at the same time I just feel it s not safe for me because it is a deadly disease, so it s like you never know, you don t feel safe. (Male age 35 to 44) They (experts) don t seem to know a lot about HIV or AIDS. I might just be another experiment [and then find out] oh we ve found out that there is another way to pass it on... (Male age 18 to 24) In my view, the scientists will tell you that it is not harmful to you. The next minute they say it s harmful so people like me don t know what to believe. (Awaredressers volunteer) 4.5 Impact of fear of HIV on attitudes towards people living with HIV The presence of fear of transmission of HIV varied in its impact on respondents attitudes towards contact with people with HIV. Attitudes towards social contact ranged from people who felt torn between their desire to treat people equally and their fear of infection, to those who were reluctant to have any contact with a person that was HIV positive. Fear of HIV limited to some forms of contact Those respondents that struggled with their feelings about people living with HIV agreed with the message in the posters and were aware from other sources that scientifically HIV could not be transmitted through social contact. These respondents wanted to treat people equally, but their attitudes were still driven by fear of the disease. Such men and women were happy to have some contact with people with HIV and did not feel it was right to reject people. However, there were some forms of contact, particularly sharing food and drink, of which they felt too afraid to consider doing. Other contact I wouldn t mind, casual contact, hand shake, but eating and then using the person s cup, I wouldn t feel comfortable with that. (Male age 35 to 44) You d feel for that person because you think they are going to die I would not be prejudice towards that person but sometimes you might worry about a small issue [for example] children playing (Male age 35 to 44 years) Others explained that they would not reject a close family member or friend, but would be less accepting of other people: 28

42 I can t just cut myself off from my family or something like that, but someone that you don t need to be around, it s very easy to stay away (Awaredressers volunteer) Such fears were expressed despite the same respondents mentioning that they believed the main transmission routes for HIV were via sexual intercourse or injection or from blood spills. The two extracts below demonstrate the dilemmas experienced by this group of respondents. These respondents were, on the one hand, adamant that contact with an HIV positive person would not lead to infection, and would advise others to this effect, but their fear of HIV prevented them from feeling comfortable about putting such views into practice. Neither of these respondents had any contact with people living with HIV. If you were to bring me a man with HIV that I didn t know and he drank out of a cup and you re telling me to drink out of it, I would find it hard to just drink out of it just like that. Maybe it s a bad thing, but I am just wary people may think that if a HIV person touches something and you touch something you may get it, or by drinking from the same glass or eating off the same plate. It s not like that. It s by blood or unprotected sex. That s the only way it can be but because it s such a serious disease, people are scared of it, because there is no cure...if there s no cure that means they don t know much about it. If they don t know much about it, then there s the possibility that I may be able to catch it by saliva, so they stay far away. (Male age 18 to 24 years) Eating and drinking with these people will not make you have HIV, they are still people, they are also human beings and they shouldn t be discriminated against it s not dangerous to associate with them I personally think it [the poster campaign] is good, it has given me some insight I haven t had contact with any person like that but, after reading this, the only thing I wouldn t be able to do is like eating with a person in the same bowl [because] in Africa we eat in the same bowl you dip your hands in the same bowl but if we were to sit at a table like here, I would have no problems with that. (Male age 35 to 44 years) These accounts also highlight different interpretations of the activity of sharing food. Some assumed that such activity referred to the use of plates and utensils at shared mealtimes, others took it to mean sharing food from the same plate and using hands to eat food. 29

43 Willingness to overcome fear of HIV None of the respondents exhibiting fear of HIV had experienced contact with an HIV positive person. Women and men commented that a factor in their attitudes was that they did not know anyone who was HIV positive. Those who were fearful of contact with someone who was HIV positive commented that if they did subsequently discover that a friend or relative was HIV positive, they would have to find a way of overcoming their fears. It s scary to know that someone has HIV, you start imagining things It s because I ve never lived with someone. If I did, I think in the beginning I would be scared, but I would have to deal with it. (Female age 18 to 24 years) If I knew somebody that is close to me had HIV, I d help them as much as I can, but I would be scared deep down as well. (Male age 18 to 24 years) Desire to learn more about HIV Among those who expressed concerns about some forms of interaction with people who were HIV positive, there was a desire to learn more about how to treat people living with HIV. Although these respondents were not convinced by the message in the posters, they were willing to learn more about HIV and felt that it was important to educate the public about such matters. You should sensitise people, educate people to let them know exactly what is going on and how to treat the HIV victim, then you will know how to treat them in a better way in society. (Female age 25 to 34 years) Reluctance to have contact with people living with HIV Despite the presence of deep rooted fears regarding transmission of HIV, unwillingness to have any form contact with people living with HIV was rare among respondents. Those that were adamant that they would not have any contact with someone who was HIV positive felt justified in their views because the medical establishment seemed to lack sufficient knowledge of the disease. You are not going to let them use me as guinea pig. Somebody has a deadly disease [so] leave me alone. (Male age 60+ years) 30

44 4.6 Impact of education on attitudes towards people with HIV There was evidence that attitudes towards HIV had changed over time. For example, business volunteers who were keen to educate the public about transmission of HIV and dispel myths about social contact, described how they had initially been fearful of the disease. The Awaredressers outreach team described how they had to give the volunteers time to think about HIV, read leaflets and ask the outreach worker questions, many of which were regarding transmission of HIV via social contact. Eight, nine years ago somebody would say HIV [and I think] I mustn t go near them I will catch it it can be transferred through touching, it can be transferred through speaking (Awaredressers volunteer) When I first heard about AIDS I was scared because I thought you could get it through anything with blood on I thought a mosquito could carry it. I was scared if someone used my toothbrush at least now we are learning that you can only get the disease through certain ways, especially through sexual intercourse. (Awaredressers volunteer) Close contact with people who were HIV positive and in-depth education, for example HIV awareness courses, campaigns in a home country, or voluntary work, had a constructive impact on the attitudes of respondents. Those that had received such education or had experience of working with HIV positive people were far more relaxed about contact with HIV positive people and were confident that HIV could not be passed on by social contact. That [HIV awareness course] really enlightened me I was a bit ignorant about HIV I had been in contact with HIV people. I didn t scorn anybody but I was very cautious. Once I went on the HIV awareness course I was a lot more relaxed. I felt that you could get AIDS through saliva, stuff like that, which you can, well you have to get buckets and buckets of it or pints of it, but I thought you could get it through saliva so I wouldn t drink out of the same glass. [after the course] I was very relaxed because I then found out it was only through blood. (Female age 25 to 34 years) Others mentioned that activities of high profile people had made a difference to their beliefs about HIV, for example the work of Princess Diana and the experiences of the basketball player Magic Johnson: 31

45 You can t get it if you kiss them Princess Diana taught us that. (Awaredressers volunteer) The fact that he [Magic Johnson] was HIV positive and his wife wasn t carried a lot of weight. (Awaredressers volunteer) The work of Innovative Visions was also having an impact. Some respondents had heard positive speakers from Innovative Visions talk about their experiences: The fact that the positive lady came out and said that although she was HIV positive when she was pregnant, she had a normal baby and the baby is so far normal If you had any doubts about how it [HIV] was transmitted, it would be clear then because you could see the person there talking to you (Awaredressers volunteer) Some Awaredressers volunteers commented that they felt more confident about discussing HIV with their customers as a result of their involvement with the Awaredressers project. They had read the leaflets supplied for their customers and felt that they had learnt more about the disease. There was evidence that involvement in Awaredressers had also influenced beliefs about the transmission of HIV and quelled reluctance to have contact with a person living with HIV. I used to shun myself from a lot of things I won t drink, when I go to people s house I won t use their cups, but doing that you can t help them I m full of compassion for them now, first I didn t understand and now I do Years back, we went to a meeting, a church meeting. We met a guy and he said Oh, I don t have any place to live, so can you help? We don t know him, but because we are Christians, we have to [help] For two weeks he lived with us the day he was leaving the minister was praying [and said] those with HIV should come forward so we can pray for them. And this guy walked out At that time, I was afraid and I said We ve drunk with this guy! We ate with him! So when [Awaredressers] came in, I said, So it s true, if someone has it you can t get it. (Awaredressers volunteer) 4.7 Impact of the poster campaign on attitudes Overall, it appears that the message of THT s HIV Prejudice and Discrimination Campaign appeals to men and women who agree that it is wrong to discriminate against people with HIV, but have difficulty overcoming their own fear of the disease. 32

46 Among these people, fear of transmission of HIV dominated reactions to the campaign message. Despite strong levels of agreement with the message of THT s HIV Prejudice and Discrimination Campaign, these respondents did not feel confident that contact with people who are HIV positive was risk free. During the interviews, these people stated that the only ways in which HIV could be passed to another person were by sharing needles, unscreened blood transfusions, and unprotected sex. This knowledge predated THT s HIV Prejudice and Discrimination campaign and these respondents did not feel that they had discovered anything new about HIV transmission from the posters. Despite not highlighting saliva as a transmission route, fear of the possibility of salivary transmission via social contact was the aspect of HIV transmission that respondents continued to be unconfident about. This group of respondents did not think that they were prejudiced towards people living with HIV, but they did feel scared and wary of people with a positive HIV diagnosis. Whilst the posters did not change the views of these respondents, they did feel that the posters were a reminder of the issues. I ve been aware all along that living with an HIV person does not mean that you will have HIV [but he has qualms about sharing cups and bowls to eat or drink] this is sort of a reminder that that is the situation. (Male age 35 to 44 years) One cannot shift the fear easily, it takes some time. This sort of awareness is good and it will make people think twice. It will make people examine their thoughts and say well maybe I m wrong You have to bombard people with this sort of awareness for people to feel it [is information] that they can trust people want to feel safe. It s not a matter that they are doing it [discriminating] deliberately, it s just [that] people want to protect themselves and their families. Therefore, if it takes discriminating against someone with HIV to protect their families, they will do it unless they are totally convinced that it s not going to harm them. (Awaredressers volunteer) Not all of the business volunteers were convinced that customers read the posters. Some volunteers felt that customers were usually too busy or distracted to take in the message of the poster in any depth. There was also a comment that users of international phone call centres included people who did not speak English and would not have understood the posters. Despite these reservations, Awaredressers volunteers pointed out that the posters were useful in providing them with 33

47 opportunities to discuss HIV with their customers. In this way, the posters increased the number of occasions for discussion of HIV in the community. People come in and say what s that? Which is good because it makes me able to explain why it s there. (Awaredressers volunteer) They [customers] ask things, but sometimes they think it is all about unity. I told them it s more than unity It s about a lot of things, sickness, how to love those that are sick, you don t have to shun them. (Awaredressers volunteer) We are now able to bring this [HIV] out into the open and people can share it [information]. I can share with any person that comes into my shop, any person, any white, Chinese, that comes into my shop I say Do you see that poster, what do you think of that? And they will have their opinion and I will have mine and we will try to come to a compromise, to come together and share this together. (Awaredressers volunteer) 34

48 5 Targeting black Africans with HIV awareness campaigns 5.1 HIV awareness campaigns welcomed in the African community Overall, respondents thought it was a good idea to display the posters in local African businesses. Awaredressers business volunteers, customers and residents welcomed interventions that targeted their community. They felt that up until now their community had been neglected and there was little information available for them about HIV. Volunteers felt that because their community was shy about talking about sexual matters, they needed encouragement to consider HIV-related subjects, and they believed that customers might trust local shop owners or hairdressers more than health authority officials. Other respondents, including people living with HIV, agreed that poster campaigns were a good idea in order to remind people about HIV because they [the public] know about it, but they try to ignore it. 5.2 Discontent about images of black Africans in the posters There was agreement among respondents that the campaign posters were seeking to attract the attention of the black African community. This view was informed by the images used in the posters. Respondents were quick to point out that, as far as they could see, all the faces in the posters were black. Few people were happy with the focus on black Africans in the posters. I love it because our population have not heard a lot about this type of thing but I think it should be more of a white and black thing. Not just black. If you do this [poster] in Africa, that s fine, but over here people will feel insulted. I don t mind them [poster images] but at the same time I feel Why black? (Awaredressers volunteer, displaying Nelson Mandela poster in her shop) Concern about the imagery used in the posters was expressed mainly in relation to the poster showing people on a civil rights demonstration and when all three posters were considered as a set. Taken individually, particularly the poster depicting Nelson Mandela, the posters were regarded favourably. The image of Nelson Mandela was regarded as one that had special meaning for the black community, but also 35

49 appealed to everyone, not just people of African or Caribbean origins (see figure 5 for a summary of reactions to the image Nelson Mandela). Views regarding the focus on Africans in the posters ranged from people who felt: that the images suited the message; people who liked the posters, but wondered why the focus was on black people; people who felt the images used were misleading and inappropriate; and those who were unable to engage in the posters due to their anger and discomfort about the images used. There was evidence that for some respondents, the focus on Africans in the posters implied that HIV originated from Africa. This perception detracted from attempts in the posters to raise awareness among Africans in the UK. These respondents were reluctant to discuss the posters during the in-depth interviews because they felt angry and uncomfortable about the images being used: Black people get annoyed when they feel black people are being stereotyped they get annoyed and they would rather not talk about it [HIV]. They don t want to know. Awaredressers volunteer I feel so sad about it [focus on Africans] because it s not Africans, we don t know where HIV came from. (Respondent living with HIV) Discontent regarding the use of black faces was informed by the view that the HIV epidemic affected everyone; that focussing on one group misled the public about who was at risk; and that Africans were being stigmatised. These factors are discussed in turn. (i) HIV can affect anyone Respondents were all aware of the scale of the HIV epidemic in Africa and this was a source of great concern. However, respondents were adamant that HIV is everywhere and affected people of all backgrounds and status because it [HIV] doesn t see colour. Consequently, respondents felt that health interventions should remind the public that HIV can happen to anyone. Its just one of those things that s just widespread all over the place, whether it s young, old, black, white, Asian, whatever. It s widespread all over the world (Male age 18 to 24 years old) 36

50 It can happen to anyone, even if you don t sleep around it can happen by accident, like blood transfusions. So I don t think it s for one area or a certain type of person. (Female, age 18 to 24 years) It s not just Afro-Caribbeans that have AIDS. (Female age 25 to 34 years) Until you know you are positive, that s when you are able to know or understand that it can happen to anybody. So it all comes down to the same thing awareness. Until people accept that it can happen to anybody, maybe things will change. (Respondent living with HIV) The focus on black Africans conflicted with the reasons that some Awaredressers volunteers had originally become involved in the project and what they saw as the aims of Awaredressers: I m doing this to make people aware of HIV, that it can be anybody that can get it, anybody. It does not matter if you are the president, or you re the queen, or you re king, anybody can get it, and that s my message to them. (Awaredressers volunteer) Despite stating that HIV can affect anyone, respondents did believe that certain groups were at greater risk from HIV. Respondents identified the following as the predominant risk groups: Figure 7 Perceptions of people most at risk from HIV Public perceptions of people engaging in activities that exposes them to blood transmission Injecting drug users People who are at risk of cuts or dealing with blood, for example: People who are always fighting Members of the police force Cont Public perceptions of people who could be exposed to sexual transmission People who do not use condoms Homosexual men People working in the sex industry Young people View of older respondents who regarded younger people as reckless and without the responsibilities that curbed the behaviour of older people 37

51 Older people View of younger people because they had not heard of young people with HIV View of businesses who found that older people tended to assume they knew everything they needed to know about STIs Couples in long term relationships (when extra-martial sex is regarded as a significant possibility). Some respondents were aware of the epidemiology of HIV in the UK (see Foreword) and thought that there was a possibility of people travelling to countries and bringing HIV back with them. However, these respondents still agreed that the focus on Africans in the posters was inappropriate. They shared the belief that HIV could affect anyone, adding that people of African origin mixed with and married non- Africans and felt that both the African and non-african population still needed education about HIV: African people are no longer going with African people, they re actually dating white people, so white people need to know too. (Female age 34 to 45 years) It s not just Africans, it s whites too. At first, people thought it s just Africans who have AIDS, but it s not. It s a mix it s all over. People even get it through injection, some nurses get it through injection, it s not just blacks because black and white, they mix together, they do things together, now they are marrying so anything can happen to anyone. (Awaredressers volunteer) Even if it s in the African community, I think it [HIV] should be advertised with white people because black people know there is HIV, but the white population are not very open-minded about it. (Female age 18 to 24 years) This disease is not only affecting African communities, it s affecting everybody. It s something that you can catch for being silly, just one slack moment and then you re in trouble. So I think everyone has to be aware and educated. (Awaredressers volunteer) Consequently, respondents felt that the focus on black Africans in the posters misled the public because it implied that only black people or Africans were at risk from HIV. Maybe some white people think it is for blacks and that would be a deadly mistake if the adverts were only showing blacks that might send the wrong signals. (Male age 35 to 44 years) 38

52 What I don t understand is why they try to portray HIV as a one-sided thing. It s not one-sided at all, I believe it is international because it is not only Africans, it s mixed, so they can t portray one side I don t think it [the poster] is right because it portrays that only Africans have HIV, and it s not like that. (Female age 25 to 34 years) Instead, respondents wanted publicity about HIV to include different types of people rather than focus on one community. As far as publicity they should try and not specifically focus on Africa because I think that might have a bad impact so they should have a range like Asians, Europeans, Americans, then it doesn t look too negative on African countries. (Female age 18 to 24 years) Stop saying that HIV is from Africa. It s everybody s concern. They should try to eradicate the problem before it escalates. Stop pointing to one side, because Africans are all over the world. The problem is not only in Africa, it s all over the world so we should try to minimise or eradicate this type of disease before pointing the finger. (Female age 25 to 34 years) HIV awareness should be targeted at everybody, it s not just for black people posters should show a white person and a black person together I don t think I ve seen any poster with a white person, if it s a white person it s about gay person or something like that. (Respondent living with HIV) (ii) Danger of Africans being stigmatised Respondents were worried that the current media focus on HIV in Africa stigmatised African people and that Africans were being blamed for HIV. There was evidence in respondents accounts that members of the non-african UK population associated HIV with people of African origins. Respondents provided examples of situations when assumptions had been made about HIV status or people had been teased about being HIV positive because of their African background. The suggestion that HIV originated from Africa made people angry and upset. These respondents felt that the posters were reinforcing the view that HIV originated from Africa, a viewpoint that many disagreed with and were adamant that You have to change the idea that the disease is from Africa. 39

53 This demonstration one [poster] says we got this AIDS from Africa, from chimpanzees and monkeys and that really hurts me personally. (Awaredressers volunteer) If they see a black person they think oh that s the person that came with the virus. They ll be scared of us, which is not fair. (Respondent living with HIV) 5.3 Support for use of images of black Africans in the posters Not all respondents assumed that the presence of black faces in the posters was solely to attract the attention of the African community. One respondent, a young student, felt that the images used in the posters were seeking to make a link with slavery, racism and HIV discrimination, rather than targeting black people. What they are trying to say is that having HIV in this day and age is like being a slave in those days. It s nothing to do with black, just people. It s just that they are using that as an example and it just so happened that the only people to be enslaved at that time were black people. (Male age 18 to 24 years) 40

54 6 Suggestions for future campaigns 6.1 Continuation with the poster campaigns Respondents were asked their views on what else could be done to further challenge discrimination towards people with HIV. Despite reservations about the focus on Africans in the posters, the idea of a poster campaign was generally well received by customers and residents. Businesses were happy to display posters in future. However, respondents did feel strongly that future campaign materials should use images of people from more diverse backgrounds. This was because respondents felt that HIV could affect anyone and that people need to work together to prevent the spread of HIV. They wanted these perspectives to be reflected in future campaigns. Respondents made suggestions for other role models to be included in the posters, for example sports personalities, singers, or African football players in UK teams. They also pointed out that role models do not have to be African and someone such as David Beckham had universal appeal and might be better known than Nelson Mandela among young people. Respondents identified places that they thought would benefit from the distribution of information about HIV. These suggestions were made in relation to HIV in general rather than specifically THT s HIV Prejudice and Discrimination campaign. Many suggestions focussed on places frequented by young people, for example colleges, bus stops, shopping centres and schools. Suggestions also focused on places that caught passing trade rather than events that people had to make specific plans to attend. People agreed that the public and business people simply did not have time to attend meetings or seminars. They felt posters or the radio were a more effective means of communication for busy people. Others suggested places where the public were likely to meet each other or might be considering sex but would be forgetful about using condoms, for example pubs and clubs. Schools and colleges were considered key places to raise HIV awareness. Younger people mentioned that there was very little HIV awareness at their schools or colleges. They recalled that their school sex education had tended to focus on prevention of teenage pregnancy and STIs, with no mention of HIV at the time. 41

55 However, several difficulties with disseminating information via schools were identified, for example: disinterested teenagers not attending meetings; headteachers not giving permission for leaflets to be circulated in the school; older college students only attending the lessons mandatory for their course; and the need to educate teachers first. There was some familiarity with past anti-discrimination campaigns, for example posters on London Underground stations and trains. The respondents that had seen these posters wanted to see more HIV-related awareness raising on the London Underground. Respondents suggested numerous public and commercial venues for distribution of HIV-related materials. These are listed in Figure 8. Figure 8 Suggestions for further distribution of posters Public Services Shops and services GPs Shopping centres Libraries e.g. in Burnt Oak Costcutter in Burnt Oak Tube stations Large supermarkets Bus stops e.g. the Asda store off Edgware Road Churches Local health food shops Local charity shops Mini cabs Shop windows 6.2 Reduce focus on HIV Some respondents were keen that the focus on HIV was diluted and requested that information about other diseases be circulated around the community. Respondents felt that diseases they believed to be more threatening to the community than HIV were being neglected, for example heart disease and diabetes. Why only put HIV in the shops, among the black man s shops, they know there are other diseases that kill the black man out there. (Male age 25 to 34 years). The Awaredressers leaflet racks on business premises include information about non-hiv or STI-related health topics. Customers who had picked up leaflets on such subjects as diabetes and heart disease commented on the usefulness of such materials. 42

56 6.3 Other ways to address HIV discrimination and prejudice Respondents shared the view that if people were educated about HIV they would not be so fearful of the disease. This view was certainly reinforced by those respondents who were well informed about HIV and felt confident about their contacts with HIV positive people. Respondents wanted to hear more about the views and experiences of HIV positive people and asked for their viewpoints to be included in leaflets. The Awaredressers team commented that a poster campaign such as this could be balanced with a more positive approach that demonstrates to the public what they are good at and how this can contribute to the experiences of people living with HIV. A request was made for more data about HIV prevalence in leaflets about HIV. Respondents described experiences of HIV campaigns in home countries, for example, educational programmes run by medical staff explaining how people could protect themselves and marches with bands, singing and banners. These campaigns were described favourably by respondents and had clearly made an impression on them, particularly television campaigns and interviews with HIV positive people. Respondents wanted to see more about HIV on television in the UK, for example documentaries or stories about high profile people with HIV demonstrating the importance of social contact for people living with HIV. Others suggested that posters were not enough, and wanted to see more social events in the community. Business volunteers commented that such events were more suited for members of the public rather than small business owners who had little spare time. The Awaredressers team added that, based on their experience of Awaredressers, targeted interventions needed to be undertaken in partnership with the community and other agencies, for example black and ethnic minority business and community forums and race equality councils. The team felt such partnerships were important for a number of reasons, for example: to avoid contributing to racism; because there is still much to learn about sexual and social mixing among different communities; and in order to encompass the underlying causes of health inequalities. Respondents felt that the subject of HIV was still not being taken seriously enough. There was a view among respondents that basic work was still required to bring HIV out into the open because people always talk about it in a quiet voice. Respondents wanted more information about: what happens if you get the disease; how you can get it; how it started out in the first place; how it will affect you if you get it; how the 43

57 immune system is affected; and what sort of help you can get. The Awaredressers team felt that a project such as Awaredressers could contribute to anti-discrimination work by bringing HIV out into the open and creating an environment where it is acceptable to discuss HIV. Overall, respondents agreed that information about HIV still had to be spread: You have to keep on saying, keep on talking until everybody has the message. (Female age 25 to 34 years) Finally, a respondent living with HIV explained that worries about HIV discrimination were not the only reasons for non-disclosure of HIV status. She pointed out that it was important to have control over disclosure and its possible impact, adding that: If I was asked today what would help me be confident or comfortable about telling my family, it s the independence of getting my life back to normal. Of being able to do what I ve always tried to do finish my studies and get a job. Once I m comfortable and confident in what I m doing I don t think I would really think or care what other people thought of me because I have achieved my inner goals and I m doing the things I want to do. (Respondent living with HIV) 44

58 Appendices Appendix 1 Sample Profile Age Respondents 18 to 24 years 4 25 to 34 years 4 35 to 44 years 5 45 to 59 years 0 60 years and over 1 Sex Male 6 Female 8 Economic status Employed 5 Retired 2 Student 5 Unemployed 1 Voluntary work 1 Family origins Ghana 4 Nigeria 3 Sierra Leone 2 Uganda 1 South Africa 1 Caribbean 1 Not mentioned 2 Household Single 4 Married with children 4 Lone parent 2 Couple 1 Lives with parents 3 Familiar with Awaredressers Yes 7 No 7 TOTAL INTERVIEWED 14 I

59 Appendix 2 Fieldwork Profiles G i l l i a n E l a m Qualitative Social Policy Research May 2002 Awaredressers and the Stopping Stigma Campaign I am writing to ask you for your help with a research project. I am an independent social researcher and I have been asked by Awaredressers and the Terrence Higgins Trust to find out what you think of the Awaredressers project in Barnet. The Awaredressers project is run by Barnet Health Development and Regeneration Team and is one of the few of its kind in the country. Health promotion workers work closely with local businesses like this one to raise awareness of health issues and to give out leaflets and condoms. We would like to include people living in the Barnet area to find out their views about local businesses being used to give out health information. Your views will help ensure that projects like this are as effective as possible and will help people in other parts of the country to set up similar projects. Don t worry if you have never heard of Awaredressers, your views are still important. For all interviews: Everyone taking part in the research will be given 20 as a thank-you; the interviews will be informal and will take around 45 to 60 minutes; the interviews can be carried out at your home or another quiet place at a time of day to suit you; and the interviews will be completely confidential. Participants will not be identified, names and other personal details will not be used in any reports. If you would like to take part, please tell the person who gave this letter to you. They will ask for your name and telephone number so that I can get in touch to arrange a time to meet you. I hope you can take part in this important project and thank you for your support so far. Yours sincerely Gillian Elam II

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