UNIVERSITI SAINS MALAYSIA School of Communication Semester 2 Academic Session 2007/2008
YSB 501 SEMINAR ON PUBLIC COMMUNICATION CAMPAIGN
Stigma is a serious barrier to combating illness such as HIV/AIDS. Discuss the causes of stigma and frameworks for overcoming stigma. Conduct interviews with the relevant organizations on their strategies to overcome the problem. Conduct a content analysis of a selected newspaper/magazine for a period of one year to analyze the coverage of the selected issue.
INITIATIVES IN RESPONSE TO HIV/AIDS STIGMA & THE COVERAGE OF HIV/AIDS STIGMA IN A LOCAL MEDIA – A CONTENT ANALYSIS OF NEW STRAITS TIMES
PREPARED BY: WONG LAI CHENG (S-KOM0035/07)
PREPARED FOR: PROF. MADYA KHOR YOKE LIM
Initiatives in Response to HIV/AIDS Stigma 1.0 INTRODUCTION Many people living with HIV/AIDS are severely affected by health-related stigma and discrimination. Stigma is increasingly recognised to have a major impact on public health interventions. Occasionally, this impact is positive, but usually stigma and (fear of) discrimination lead to delay in presentation to the health services, prolonged risk of transmission, poor treatment adherence and increased risk of disability and drug resistance. A substantial amount of research has been done on stigma and related issues in each of these health fields, but little effort has been made to synthesise all this work and the experiences that have been collected over the years.
1.1 Research Problem
In some societies, laws, rules and policies can increase the stigmatisation of people living with HIV/AIDS. Such legislation may include compulsory screening and testing, as well as limitations on international travel and migration. In most cases, discriminatory practises such as the compulsory screening of 'risk groups', both furthers the stigmatisation of such groups as well as creating a false sense of security among individuals who are not considered at high-risk. Laws that insist on the compulsory notification of HIV/AIDS cases, and the restriction of a person's right to anonymity and confidentiality, as well as the right to movement of those infected, have been justified on the grounds that the disease forms a public health risk.
Perhaps as a response, numerous countries have now enacted legislation to protect the rights and freedoms of people living with HIV and AIDS and to safeguard them from discrimination. Much of this legislation has sought to ensure their right to
employment, education, privacy and confidentiality, as well as the right to access information, treatment and support.
Together with the widespread belief that HIV/AIDS is shameful, these images represent 'ready-made' but inaccurate explanations that provide a powerful basis for both stigma and discrimination. These stereotypes also enable some people to deny that they personally are likely to be infected or affected.
Governments and national authorities sometimes cover up and hide cases, or fail to maintain reliable reporting systems. Ignoring the existence of HIV and AIDS, neglecting to respond to the needs of those living with HIV infection, and failing to recognize growing epidemics in the belief that HIV/AIDS 'can never happen to us' are some of the most common forms of denial. This denial fuels AIDS stigma by making those individuals who are infected appear abnormal and exceptional.
Stigma and discrimination can arise from community-level responses to HIV and AIDS. The harassing of individuals suspected of being infected or of belonging to a particular group has been widely reported. It is often motivated by the need to blame and punish and in extreme circumstances can extend to acts of violence and murder. The role of mass media and other communication strategies in behavioral formation and change is clearly documented. Studies also emphasize the critical role of interpersonal communication and of opinion leaders to influence behavioral change at an individual level (Morisky & Ebin, 2001; Rogers, 2005). Atkin (2001), for instance, notes the importance of personal influencers in changing the beliefs, attitudes, behaviors, and practices of those who trust and follow them or through social interactions. Religious and other community leaders fall in this category of change
agents at an individual, societal, and policy level, and are therefore appropriate in addressing HIV/AIDS stigma related issues at these levels.
1.2 Research Objectives The purpose of this research is to investigate: • • • • Causes of HIV/AIDS stigma Strategies used by CASP in combating HIV/AIDS stigma Communication mediums/channels used in combating HIV/AIDS stigma Challenges faced in attempt to address the HIV/AIDS stigma
1.3 Research Questions Given the influence and social responsibility role of CASP in addressing HIV/ AIDS stigma issue that affect society, this study used the following broad research questions to examine their contributions to HIV/AIDS stigma prevention: 1) What are the factors contributing to HIV/AIDS stigma in Penang? 2) How does Community AIDS Service Penang (CASP) contribute towards the fight against HIV/AIDS stigma in Penang? 3) What are the communication media/channels used by CASP in combating HIV/AIDS stigma? 4) What are the challenges that Community AIDS Service Penang (CASP) face in attempt to address the HIV/AIDS stigma within the communities?
2.0 LITERATURE REVIEW 2.1 The Concept of Stigma In many health conditions stigma is receiving increasing attention. Following Goffman (1963) many authors define stigma as an undesirable or discrediting attribute reducing an individual’s status in the eyes of society (Brown et al., 2001; Link & Phelan, 2001; Weiss, 2001). Several authors have tried to revise the concept. Link and Phelan proposed a definition of stigma that includes the context in which stigma originates and exists. Stigma exists when: “… elements of labelling, stereotyping, separation, status loss, and discrimination occur together in a power situation that allows them” (Link & Phelan, 2001:377). Stigma is a powerful discrediting and tainting social label that radically changes the way individuals view themselves and are viewed as persons. People who are stigmatised are usually considered deviant or shameful for some reason or other, and as a result are shunned, avoided, rejected, or discriminated. As such, stigma is an expression of social and cultural norms, shaping relationships among people according to those norms. Stigma must be regarded as a social process in which people out of fear of the disease want to maintain social control by contrasting those who are normal with those who are different (Parker & Aggleton, 2001). Stigma and discrimination produce thus social inequality. Stigma marks the boundaries a society creates between "normals" and "outsiders," between "us" and "them." (Link & Phelan, 2001) Stigma builds upon, and reinforces, existing prejudices (Herek & Glunt, 1988). It also plays into, and strengthens, existing social inequalities – especially those of gender, sexuality and race (Brown et al. 2001; Nyblade et al. 2003; Heijnders, 2004). In contrast, however, Heijnders ( 2002) found that fear of stigmatisation also strongly motivated some people to continue treatment, because they related the
treatment with the prevention of visual symptoms of the disease and thus prevention of stigmatisation.
2.2 HIV/AIDS related Stigma HIV-related stigma refers to all unfavorable attitudes, beliefs, and policies directed toward people known or perceived to have HIV/AIDS, their significant others, loved ones, close associates, social groups, and communities. Patterns of prejudice, which include devaluing, discounting, discrediting, and discriminating against these groups of people, incite and support existing social inequalities especially those of gender, sexuality, and race at the root of HIV-related stigma. Often, HIV/AIDS related stigma is expressed in conjunction with one or more other stigmas, particularly those associated with homosexuality, bisexuality, injection drug use and promiscuity. People with certain religious beliefs and less educated people may be more likely to harbor HIV/AIDS-related stigma. People who express stigmatizing attitudes about HIV often have retained misinformation about the transmission of HIV. While blatant stigma towards people living with HIV has declined in recent years, stigma still impacts HIV prevention efforts. HIV/AIDS is so highly stigmatized because of its associations with sex, drug abuse and, often, those already considered outside the so-called mainstream of society - including men who have sex with men, sex workers, injection drug users and migrant populations. (1) Stigma can cause people to perceive individuals with or at risk for HIV as “them,” reinforcing the feeling that HIV “couldn’t happen to me.” Failure to address stigma can deter individuals from seeking voluntary counseling and testing for HIV and proper medical care.
Ever since the first case of HIV/AIDS was detected and the epidemic began to spread, stigma has surrounded this disease. Twenty years later the Global Campaign ‘Live and Let Live!’ stated: ‘Despite 20 years since the discovery of AIDS and the scientific advances gained, there is still much denial, discrimination, fear and stigma all over the world - even in countries where large numbers of people are infected’ (WHO, 2002). The most devastating effect of stigma in the field of HIV/AIDS is the failure of preventive measures, causing continued transmission. Much HIV/AIDS-related stigma builds upon and reinforces earlier negative thoughts. People with HIV/AIDS are often believed to have deserved what has happened by doing something wrong. Often these ‘wrongdoings’ are linked to sex or to illegal and socially frowned- upon activities, such as injecting drug use. Men who become infected may be seen as homosexual, bisexual or as having had sex with prostitutes. Women with HIV/AIDS are viewed as having been ‘promiscuous’ or as having been sex workers. The family and community often perpetuate stigma and discrimination, partly through fear, partly through ignorance, and partly because it is convenient to blame those who have been affected first. Images of HIV/AIDS in the media and television, which suggest that it is a ‘woman’s disease’, a ‘junkies’’ disease, a ‘Black disease’, an ‘American disease’ or a ‘gay plague’, also create HIV/AIDS-related stigma and discrimination and reinforce these stereotypes and beliefs. Although images associated with HIV/AIDS vary, they are patterned so as to ensure that HIV/AIDS-related stigma plays into, and reinforces, existing social inequalities. These include gender inequalities; inequalities that deny sex workers their dignity and rights; inequalities based on race and ethnicity; and inequalities linked to sexuality in general, and homosexuality and transgendered status, in particular.
An advantage of fighting stigma is that it would help reduce HIV-transmission (Brimlow et al, 2003). Most of these strategies mainly focusing on the work of Brown et al. (2003), as this was the only review found. Brown et al. (2003) found that multistrategy and multi-level approaches are more effective in raising knowledge and reducing stigmatising attitudes, than single approaches, like education and contact. “HIV/AIDS-related stigma comes from the powerful combination of shame and fear - shame because the sex or drug injecting that transmit HIV are surrounded by taboo and moral judgment, and fear because AIDS is relatively new, and considered deadly. Responding to AIDS with blame, or abuse towards people living with AIDS, simply forces the epidemic underground, creating the ideal conditions for HIV to spread. The only way of making progress against the epidemic is to replace shame with solidarity, and fear with hope.” Peter Piot, 2001.
2.3 Factors Contribute to HIV/AIDS Stigma In many societies people living with HIV and AIDS are often seen as shameful. In some societies the infection is associated with minority groups or behaviours, for example, homosexuality, In some cases HIV/AIDS may be linked to 'perversion' and those infected will be punished. Also, in some societies HIV/AIDS is seen as the result of personal irresponsibility. Sometimes, HIV and AIDS are believed to bring shame upon the family or community. And whilst negative responses to HIV/AIDS unfortunately widely exist, they often feed upon and reinforce dominant ideas of good and bad with respect to sex and illness, and proper and improper behaviours. Factors which contribute to HIV/AIDS-related stigma:
HIV/AIDS is a life-threatening disease People are scared of contracting HIV
The disease is associated with behaviours (such as sex between men and injecting drug-use) that are already stigmatised in many societies
People living with HIV/AIDS are often thought of as being responsible for becoming infected
Religious or moral beliefs lead some people to believe that having HIV/AIDS is the result of moral fault (such as promiscuity or 'deviant sex') that deserves to be punished.
• • • •
Misinformation about HIV transmission. Negative talks on sexuality and family planning on religious grounds. Silence regarding sexual practice preferences and desires. Pictures or words which create fear from mass media e.g. television, radio and magazines.
HIV positive people themselves might contribute to stigmatization due to:
a)Reluctance of outing oneself by- fear of not being accepted anymore by family and community.
b)Avoidance of social contact and isolation.
The media sometimes contribute to stigmatization due to:
a) Negative naming b) Sensationalized reporting • Stigmatization might happen at the work place due to:
a)“You are only employed if you take an HIV test and be HIV negative” b)“We can not share with you as you are polluted (HIV positive).” c)“You should leave employment if your are HIV positive”.
Stigmatization might also happen in the health profession due to:
a)Fear due to shortages of medical supplies and the fear of being infected. b)Test people without consent for HIV test. • Stigmatization might happen in the educational system due to:
a)Children who have serious health problems are marked b)Orphans are not well accepted c)Gregory Herek, a behavioral scientist referred to previous studies that found that people living with AIDS are evaluated more negatively than people diagnosed with other incurable diseases, even by health care workers. He also cited studies that found it common for caregivers to avoid people with AIDS and to overestimate the risks of casual contact with people living with HIV/AIDS. Alonzo and Reynolds (1995) and De Bruyn (1999) identified four factors that contribute to HIV-related stigma: • HIV/AIDS is a life-threatening disease, perceived to be contagious and threatening to the community. The disease is not well understood which contributes to fears. • People living with HIV are often seen as responsible for having contracted the disease, which increases feelings of guilt. • HIV/AIDS is related to behaviors sanctioned by religious and moral beliefs, which results in the belief HIV is the consequence of deviant behavior and deserves punishment. • HIV/AIDS is associated with pre-existing social prejudices such as sexual promiscuity, homosexuality and drug use behavior that is already considered ‘less worthy’ by many societies. HIV then adds to the existing societal judgment. HIV-related stigma is therefore born from fear and ignorance.
Causes of HIV/AIDS Stigma by Catherine Campbell et.al (2005): • • • • • • Fear HIV/AIDS information The fact that HIV/AIDS is linked to sex Poverty Not enough open discussion Lack of HIV/AIDS services
2.4 Fight against HIV/AIDS Stigma Although a lot is known about stigma, very few targeted interventions have been successfully implemented and evaluated. Combating stigma involves designing and implementing targeted activities to build awareness and respond to the impact of stigma in a way that empowers the stigmatized while sensitizing society to desist from stigmatizing practices as well as putting in place measures to discredit and punish those who wittingly stigmatize against others. A lack of sufficient information fuels stigmatizing behavior. One way to combat stigma based on lack of information is by providing education. It is humanity’s common responsibility to challenge stigma. And it is definitely not just a responsibility for people living with HIV/AIDS but, yes, people living with HIV/AIDS must take the lead. Everyone is the society play a role in educating others and advocating for new attitudes and practices. People living with HIV/AIDS should be encouraged to be role models. It is everyone’s duty as members of society to think about the words we use and how we treat people living with HIV/AIDS. There are things where we can do, as an individual, such as watching our own language and avoid stigmatizing words. Provide a caring environment and be supportive of family members who are people living with HIV/AIDS. Visit and support
people living with HIV/AIDS and their families in the neighborhood. Encourage people living with HIV/AIDS to use the available services such as counseling and testing, medical care, access to antiretroviral therapy and refer them to others who can help. 2.5 Role Play The goal should be to look at a strategy for changing attitudes in a specific area. i) Interventions at the Intrapersonal Level As a result of facing constant pressure resulting from stigma attached to specific health conditions, people affected often internalise this stigma. They internalise guilt and blame for having this disease, are psychologically affected by stigma and tend to isolate themselves (Nyblade et al, 2003). Individual behaviour change is the primary focus at the intrapersonal level. Interventions aim at changing characteristics of the individual such as knowledge, attitudes, behaviour, self-concept, improving selfesteem, coping skills, empowerment, and economic support. People with HIV and AIDS must play a central role in stigma reduction and programme development. Bearing the brunt of stigma, they have the life experience and knowledge needed to design and implement appropriate stigma-reduction responses. In particular, they can help combat the fear of casual transmission of HIV, the belief that HIV means immediate disability and death, and the feeling that people with HIV are somehow different from everyone else. For many, the ability to contribute to the fight against HIV/AIDS-related stigma is life-affirming in itself. (International Centre for Research on Women, 2006) Within the field of HIV/AIDS, counseling is often mentioned as an important strategy to decrease stigma (Brown et al, 2003; FHI, 2004; Seaton, 2003; WHO, 2002). This strategy provides social reinforcement for positive attitudes, behavior change and
maintenance of safe behavior (Seaton, 2003). In their review of stigma reduction interventions, Brown et al (2003) found three studies that evaluated counseling approaches. Two studies focused on the reduction of emotional distress after having the HIV test (Perry et al, 1991; Simpson et al, 1998); the third study focused on selective disclosure (Kaleeba et al, 1997). These interventions showed that distress among HIV-positive individuals was only reduced in intense stress prevention programmes. Counseling and video strategies did not result in any changes in anxiety (Perry et al, 1991), even resulted in higher testing rates as compared to the control groups (Simpson et al, 1998). The third intervention showed that after counseling, 90% of the participants revealed their serostatus to at least one other person (Kaleeba et al, 1997). Counseling has also been implemented at group level (Floyd-Richard and Gurung, 2000). Though the outcome measures in this study were weak, it led the authors to claim positive results. They concluded that to reduce the effects of stigma on the lives of people with leprosy group counseling is a time efficient and productive method of counseling, but that counseling alone will not eradicate stigma. In their review of strategies for assessing and diminishing self-stigma within mental illness, Corrigan and Calabrese (2005) concluded that cognitive therapy has been shown to be an effective strategy for helping people to deal with the consequences of self-stigma. Cognitive-behavioural therapy (CBT) is a structured approach in which patients are trained to identify and modify negative beliefs and negative interpretations. The elements of this approach include education, symptom and stress management strategies, exposure to symptoms and situations to facilitate desensitisation to feared stimuli, and cognitive challenges to change negative beliefs (Krishnamoorthy, 2003). Hall and Tarrier (2003) found that CBT to treat schizophrenic
patients resulted in increased self-esteem and improved social functioning. Another study that looked at CBT for Chinese HIV-infected men in Hong Kong demonstrated improvements in the mental illness dimension of quality of life in these men (Chan et al, 2005). Participants were taught to identify, and confront their automatic negative thoughts and were assisted to reframe the meaning of their illness in a more constructive way. Contrary to the positive findings of the above-mentioned studies, Link et al (1991) concluded that the coping mechanisms studied hurt more than helped. They studied the effectiveness of stigma coping mechanisms (secrecy, avoidance and withdrawal) in diminishing negative labelling effects. Based on their results, they argue that stigma is powerfully reinforced by culture and that its effects are not easily overcome by the coping actions of individuals. Another approach is the formation of self-help, support and advocacy groups. Within all health fields studied, support groups exist and many reports admit the important contribution of these groups on the person’s identity and self esteem, their coping skills and social integration (Ablon, 2002; Benbow and Tamiru, 2001). Only two studies (Demissie et al, 2003; Lyon and Woodward, 2003) showed the effectiveness of support groups on stigma reduction. Mutual support consisted of encouraging and supporting fellow patients to adhere to their treatment. The educational component included sharing experiences among members and exchanging information with the general public through public readings and the dissemination of educational materials. Demissie et al (2003) found that the clubs had positive effects on the attitudes of patients, health workers and community members. Patients’ reactions to the first diagnosis improved, misconceptions on the cause and treatment were reduced, social isolation of patients lessened and compliance to treatment increased. Lyon and
Woodward (2003) offered support groups to African-American teenagers who were HIV positive. The group sessions were skills-oriented, culturally sensitive and life affirming. The curriculum offered to the groups lasted from eight to 30 weeks. A qualitative analysis revealed that the youths evaluated the programme as successful. A randomised clinical research trial has started to examine the effectiveness of this programme. ii) Interventions at Interpersonal Level Interventions at the interpersonal level aim at modifying the affected persons’ environment. These interventions deal with the impact of social support and social networks on health status and behaviors. They aim to establish relationships between members of the patients’ interpersonal environment in order to have them share ways to restore or promote their health. Intervention target-groups are the patients and his or her family, work environment, and friendship networks. Nyblade et al (2003) argue that while people with HIV/AIDS are cared for by their family, community volunteers, and health care providers, this care can come with stigma. It is therefore important to educate those caring for and supporting HIV affected persons about the disease, its symptoms and way of transmission, the language they use, available resources, and to mobilize communities to come into action (Kidd and Clay, 2003). The Memory book project in Uganda and the Yale Program for HIV-affected Children and Families (Gewirtz and Gossart-Walker, 2000) are good examples of care and support. They assist HIV positive parents to communicate with their children, to help their children in coming to terms with the seropositive status of their parents and to prepare them for a future without their parents. These projects aim in coming to terms with stigma, secrecy, disclosure and loss. They focus on helping children and families
maintain stability and develop adequate coping strategies. These interventions are mindful of the psycho-social needs of the children and their parents and are longerterm developmental trajectories. In the field of HIV/AIDS, positive results were reported from the work of home care teams (Busza, 2001; Gewirtz and Gossart-Walker, 2000; Muyinda et al, 1997). Such teams visit persons suspected to have HIV/AIDS on a regular basis and train primary care givers on how to relieve symptoms. One important lesson that home care teams try to get across is that taking care of an infected family member does not involve direct risk of infection. Although some reports on home based care concluded that their interventions resulted in a more tolerant attitude to those affected by HIV/AIDS, the effects of these approaches on stigma reduction were not studied. iii) Interventions at Institutional Level Interventions at this level aim at organisational change to modify health and stigmarelated aspects of an organisation. This can be achieved through training programmes, which increase knowledge of the disease and other health issues and of the impact of stigma on the lives of individuals. Another strategy is the development of new policies within the organisation, like offering voluntary counselling and testing services to HIV-positive employees. Particularly in the health services, stigma and discrimination are reported. Sartorius (2002) argues that within the field of mental illness stigmatisation by medical professionals is often neglected. Foreman et al (2003) found many surveys into the health workers’ knowledge and attitudes towards HIV/AIDS. Among the different health professions, nurses have been studied most, followed by doctors, laboratory technicians and dentists. They found that about 10 – 20% of the health workers hold negative attitudes towards people living with HIV/AIDS. Such attitudes are associated
with both fear of transmission and fear or disapproval of the actual or presumed lifestyles of people living with HIV/AIDS and by heavy workloads and resource constraints. Discriminatory acts vary from inappropriate comments to breaches of patient confidentiality, from treatment delay to refusal of treatment and basic care and hygiene (Foreman et al, 2003; Heijnders, 2002, 2004). Macq et. al. (2005) studied the social stigma of tuberculosis in five local health systems in Nicaragua. They found that health workers reported both feelings of affection and supportive behaviours towards persons affected as well as fear of contagion and consequent behaviour of isolation. Determinants of stigma identified were the content and channels of information, and issues of domination and power. They suggested a patient-centred approach in which power is shared between the health workers and the persons affected and to decentralise the care process, giving a more important role to persons affected and their social networks, making them more responsible in the care process. This has also been tried successfully among people with leprosy-related disability, where self-care groups now play an important role in some countries (Benbow and Tamiru, 2001). An exploratory qualitative study in the UK into the nature of the provision of mental services (Crawford and Brown, 2002) found that mental health workers described themselves as actively trying to challenge stigma, but they had a blind spot when it came to regarding clients as active agents of challenge and changing themselves. The clients described themselves in much more active terms as being aware of possible sources of stigma and being inclined to challenge negative attitudes. The authors suggest that stigma reduction programmes could be based on the professionals’ knowledge as to how their practice could lead to less stigma and at the same time could build upon clients’ own strengths to achieve
stigma reduction. The ideal would be that stigma reduction programmes become a structural part of care and rehabilitation programmes (Corrigan and Matthews, 2003). Other interventions at organisational level found in the literature were those targeting the workplace of the persons affected and faith based organisations. Many HIV projects have begun to address the workplace (Busza, 2001; Siyam’kela, 2003). These projects target instances of discrimination, like mandatory testing for applicants. They conducted awareness-raising workshops, and define employer’s responsibility towards people affected by HIV/AIDS and protection from discrimination from others. Health care settings often the first point of contact for people with HIV/AIDS have been found to be a common locus for stigma and discrimination against people with or suspected of having HIV/AIDS. Working with formal and informal health care providers including certified doctors, registered and unregistered health care practitioners, community health workers, and traditional birth attendants to create an intervention and toolkit to reduce their stigmatizing behaviors and address gender-based violence as a public health issue. Capitalizing on the respect and trust health care providers have within communities, they are learning effective ways to communicate to community members that stigma and violence are unacceptable and at the root of the worsening epidemic. Health care providers should be trained on their attitudes toward people with HIV/AIDS, discriminatory behaviors (such as refusal to treat HIV/AIDS patients), and the extent to which HIV/AIDS patients report stigmatizing behavior among health care providers. (International Centre for Research on Women, 2006) Media and others who communicate and educate on HIV/AIDS should also cover topics such as language use, delivery of accurate and precise information on transmission, risks, prevention, treatment and care (rather than vague and
sensationalized stories); and how people with HIV and AIDS should be represented in the media. The government should also practice of reviewing and censoring all media content before release which means that items not conforming to the guidelines likely will be rejected for publication or dissemination. (International Centre for Research on Women, 2006).
iv) Interventions at Community Level Stigma reduction strategies and interventions at the community level aim to increase knowledge regarding specific health conditions and regarding stigma within specific community groups. They also aim to increase community development skills, to develop support networks, and through these provide better access to services for people affected. Education is often the first step in stigma reduction and is often combined with other strategies. Education includes interventions that aim to inform the general public and community groups by increasing their knowledge about a specific illness and provides facts that counter false assumptions on which stigma is thought to be based. Education as a strategy is often documented in the literature. Educational interventions use presentations, discussions, simulations, audiotapes, and films, targeting specific populations. Information given is mostly about cause of the condition, the modes of transmission, and treatment. Several authors conclude that the content of these messages is very important for the effects on stigma and stigma reduction (Arikan et al, 1999; Corrigan et al, 2004; FHI, 2004; Hoa et al, 2004; Hong et al, 2004; Navon,1996). Reviews examining the effects of education have found mixed results (Brown et al, 2003; Corrigan and Penn, 1999). In their review on stigma reduction strategies within HIV/AIDS, Brown et al (2003) found four studies in which educational
approaches were used and these studies all had a positive effect in terms of increased tolerance of people living with HIV/AIDS. However, these studies gave mixed results regarding attitude change. Herek et al (2002) also found mixed results for educational interventions. Educational efforts were effective in improving knowledge on HIV/AIDS transmission but these efforts did not convince the general public that HIV/AIDS could not be transmitted through casual contact. Education has been considered successful in reducing leprosy-related stigma by a number of authors (Arole et al., 2002; Awofeso, 1992; 1996; Croft and Croft, 1999; Floyd-Richard and Gurung, 2000; Lynch, 2000). Like in the field of HIV/AIDS the effect of education is still subject of discussion. Opala and Boillot (1996) discussed in detail the failure of leprosy education campaigns aimed at achieving attitude and/or behaviour change at the community level. They emphasised the importance of taking into account the underlying world-view of the target group in messages about leprosy. The interventions reviewed showed that education is limited because many stereotypes are resilient to change. Corrigan and Penn argue that: ‘… participants in an education program may easily recall information that confirms mental illness stigma about dangerousness and may ignore information that challenges these stigmas’. Education programmes might lead to diminished discrimination even if dramatic changes in stereotypes were not observed (Corrigan and Penn, 1999). The reviews of Brown et al and of Corrigan and Penn showed that the effectiveness of educational approaches can be best increased in combination with other approaches, like contact and skills building. The persistence across diverse settings of “knowing, but not quite believing” that HIV cannot be casually transmitted indicates that overcoming doubts and fears is a key step for any program working to reduce HIV-related stigma. The continuation of stigma
driven by these fears, despite years of imparting information about how HIV can be transmitted, indicates that programs need to focus on the substantive content of messages pertaining to HIV as well as the style and method of delivery. (International Centre for Research on Women, 2006) Programmes can help to eliminate stigma by delinking HIV from the sensitive and often taboo social issues that are associated with its transmission, in particular sex and intravenous drug use. This delinking can be done without sacrificing effective communication of information about prevention. For example, messages, programs and policies should discuss the behaviors that can lead to HIV transmission without direct reference to particular individuals or groups to avoid the temptation to single out these groups as “vectors” of transmission. Also because people may be uncomfortable discussing some of the norms and values typically associated with HIV/AIDS, it is important to create safe spaces with a trusted facilitator for people to openly discuss their fears and opinions that can lead to stigmatizing behavior. (International Centre for Research on Women, 2006) Contact, used within the field of HIV/AIDS, refers to all interactions between the public and persons affected or infected by HIV/AIDS with the specific objective to reduce stigmatising attitudes. Contact can either by direct and face-to-face, or vicariously. Interventions derived from the contact strategy can be targeted at groups, individuals and as some authors have proposed, even to an entire nation, demonstrated by the influence of the ‘coming out’ of influential, popular people like Magic Johnson (Herek et al. 2002). Contact interventions can use these types of media images, but also video-presentations and individual encounters with persons infected with HIV. According to the WHO (2002) personal contact with someone affected by or infected with HIV can help dispel myths about the disease, and generate empathy and
understanding. The review by Brown et al. (2001; 2003) describes the potential positive outcomes of contact as a strategy. However, there are no results given that confirm this expectation. They argue that a more personal relationship with a person affected by HIV or hearing of a testimonial will demystify and dispel misinformation and generate empathy. v) Interventions at Public Policy Level Legal and public policy interventions make up a strategy since they all aim to enforce the protection of rights of people affected with a stigmatising illness. The WHO (2002) argued that ‘policies on discrimination, access to prevention and care, confidentiality of care and individual’s rights can make a significant impact’. Advocacy programmes work towards provision of an enabling environment, address governments to influence them to change policies and discriminatory laws, and to improve access to treatment and care for persons affected. Advocacy interventions go beyond education, they try to seek support, commitment and recognition from policy and decision-makers and the general public about the problem (Hamand, 2001). The International Planned Parenthood Federation has published an Advocacy Guide (Hamand, 2001), in which numerous advocacy activities and projects are described in detail. Another organisation, which is concerned with advocacy activities, is ACORD. Their projects in Uganda and Burundi recognise care and advocacy strategies as the key strategies to challenge HIV/AIDS- related stigma and discrimination (Hadjipateras, 2004). No study was found which looked into the effectiveness of advocacy as a stigma reduction strategy. Legal and policy interventions make up a strategy since they all aim to enforce the protection of rights of people suspected to be or people infected with HIV/AIDS. The WHO mentions setting policy guidelines and confidentiality, strengthening the legal
framework and mandatory testing and encouraging political, community and religious leaders to provide leadership as possible interventions. According to the authors, “Policies on discrimination, access to prevention and care, confidentiality of care and individual’s rights can make a significant impact” (WHO, 2002). Though interventions on this level are widely implemented (e.g. Foreman et al, 2003; Monico et al, 2001; Mahendra & Gilborn, 2004; Samaras, 2004) there are no evaluations found. In this regard, Parker and Aggleton (2003) aim to present a new framework to understand HIV/AIDS-related stigma and its effects, which also highlights the limitations of individualistic modes of stigma alleviation and proposes a new approach to reduce stigma in the future. According to them, “our collective inability to more adequately confronts stigmatization, discrimination and denial in relation to HIV and AIDS is linked to the relatively limited theoretical and methodological tools available to us” (Parker & Aggleton, 2003, pp.14). They stress that stigma and discrimination take place in specific cultures and contexts and as a result generalized strategies to reduce stigma might not be effective. They especially criticize individual level interventions which: “… could never be scaled up in the manner required for an efficacious response throughout Africa, Asia, Central and Southern America” (Parker & Aggleton, 2003:21). Such interventions should be complemented with other modes of stigma reduction and the authors propose to look for interventions that address community mobilization and social transformation.
Religious leaders, influential people in the community to be sensitized and educated about HIV/AIDS and involved to fight against HIV/AIDS stigma.
Media, institutions and work places to change their mode of disseminating information about HIV/AIDS.
Introduce and strengthen counselling services in all hospitals and other centres dealing with voluntary counselling and testing.
Hospital management to facilitate care to avoid “burnout” of health personnel. Raise awareness among health personnel to recognize and avoid stigmatizing behaviour.
2.6 Communication Channels / Media in Combating HIV/AIDS Stigma Generating awareness about HIV/AIDS stigma as well as care and support for those affected has always been a critical effort to stem the growth of HIV/AIDS stigma issue in the nation. Increasingly, evidence suggests that there is a need to move beyond awareness generation to behavior change communication. In order to change the public behavior, various messages need to be delivered to the community by using the right communication methods/channels. A mass media campaign was developed from the results of the Médecins Sans Frontierès (MSF) research. Through television and radio commercials, distribution of leaflets and posters, advertisements and a website, the campaign aims to inform people of the facts about HIV/AIDS to reduce misconceptions.
An effective media can raise the awareness level and can also bring about sustainable behavior change. Media is capable of performing the following roles in combating HIV/AIDS stigma according Jyoti Singh, 2008. Communication media plays the role as: A channel for communication and discussion: One of the roles of communication media is to open the channels for communication and foster discussions about HIV and interpersonal relations. Addressing HIV/AIDS stigma in the entertainment programmes can have an enormous impact on the society about the issue.
A vehicle for creating a supportive and enabling environment: Mass media can be instrumental in breaking the silence that envelopes the disease and in creating an encouraging behavior for combating with existing social norms and making positive changes in the society. For example, the Indian village, Lutsaan, turned its back on the dowry system after listening communally to Radio soap opera Tinka Tinka Sukh (Little steps for better life) aired on all India radio. Facilitator for removing stigma and discrimination attached with the disease: HIV/AIDS afflicted individuals besides the anatomical discomforts undergo the mental suffering of stigma and discrimination at the hands of the society. A number of media campaigns have focused on the need to overcome prejudice and encourage solidarity with people infected/affected by virus. WHO has various extraordinary stories of HIV/AIDS people who are not only fighting the virus but are also playing an integral role in prevention of HIV/AIDS. A tool for creating a knowledge base for HIV/AIDS Stigma related services: The collaborative efforts of all modes of media in association with NGOs organizations, service providers have brought to the lime light the availability and source of beneficial services like counseling, testing and condom provisions, treatment and social care. The broadcasters and print media have a specific role to play as their efforts have tremendous recall value. Education through entertainment: For creating an efficacious awareness about HIV/AIDS stigma, the messages need to be informative, educative as well as entertaining as these are mutually exclusive. In November 2005, BBC World Service Trust in association with Doordarshan and NACO were running India’s largest HIV/AIDS awareness mass media campaign. In an interview Richard Gere, HIV/AIDS
activist, Actor admitted that most public service announcements are unsuccessful as they are not entertaining. Mainstreaming: Broadcasters are mainstreaming the HIV issue across a number of programmes, ensuring that the message permeates a diverse range of output, not just outlets and public service messages dedicated specifically to the issue. The fact that virus affects all sections of the society is reinforced in such a way that many people who might not pay attention to a traditional HIV/AIDS campaign or who do not choose to watch HIV/AIDS programming, are exposed to HIV/AIDS stigma messages. A coordinated, multifaceted campaign has greater impact than a single programme. Documentaries, New Items, concerts, public service announcements, competitions, hotlines, books, magazines and websites can be linked together to reinforce awareness, information and messages about HIV/AIDS stigma related attitude and behavior. Putting HIV/AIDS related stigma on the news agenda and encouraging leaders to participate: In recent years several leading broadcasters from around the world have found innovative ways to report on the epidemic. The more the leaders see about HIV/AIDS related stigma in news the greater the resources they invest in anti-HIV/AIDS stigma strategies, which in turn leads to increased media coverage of the issue and helps to sustain public awareness which again has an impact on leaders’ priorities. Sharing resources ad pooling material: Several campaigns were successful as they fully utilized the opportunity of pooling the available resources with others by sharing expertise and material. Capacity Building: Successful partnerships need not be with other media outlets. Alliances of NGO, government departments and foundations can bring significant benefit for both the parties.
Media as an institution of oversight, restraint and collaborative efforts: Media can render yeoman’ services in providing accurate and correct news coverage of HIV/AIDS stigma by facilitate eliciting and generating public response to state sponsored efforts. Such efforts have the potentials to awaken social and political leaders to review their strategies and take mid course corrections in regard to policy concerning AIDS/HIV related stigma. The media has the potential to influence public opinion and attitudes about attitudes towards people living with HIV/AIDS. An analysis of media coverage and public opinion over several decades concluded that there is a strong relationship between them. When the media focuses on a particular issue, there is a higher degree of public awareness and support to tackle that issue. Attitudes affect how people with HIV/AIDS are treated or cared for by their peers, employers, families, communities, the health care system and the justice dispensing system. The media can be a great facilitator for preventing process while imparting the need for a healthy behavior towards the section of the society and individuals affected by it.
2.7 THEORETICAL APPROACH Social Influence Theory
The social influence models recognise that social factors play a major role in the initiation and early stages of drug use. Social influences may arise from the media, peers and the family. The models are significant because they were the first approaches in prevention designed to essentially change behaviours. The social influence model presents an alternative to other approaches such as information dissemination and affective education, and is the predecessor of ‘competence
enhancement’. Social influence models make up several of the core components still used in the most successful prevention approaches.
Social influence theory explains why some people listen to others (Fisher, 1988) and how one person persuades others to change their beliefs, opinions and attitudes (Turner, 1991). Research has found that people are willing to go against their own beliefs to harm another when instructed to by an authority, while some use opinions of others as a guide to reality in situations that are ambiguous and uncertain (Cline, 2003). The theory focuses on the social realities of participants with implications for understanding social influence, messages, and meanings from their viewpoint. From this perspective, social influence consists of the processes whereby people agree or disagree about appropriate behavior and form, maintain, or change social norms and the effects thereof, as well as the social conditions that give rise to such norms (Cline, 2003). The particular mechanism of social influence includes social norms, network membership, conformity pressures, media influences, social comparison, and modeling (Morisky & Ebin, 2000). There is evidence that people form and conform to social norms, and that there are influences inherent in social relationships and implicit pressures for agreement, even without instructions to agree or explicit group memberships (Turner, 1991). In HIV/AIDS related stigma, social influence and social norms directly impact society’s behaviors. Social influence approaches emphasize behavioral expectations and standards (social norms) present in the environment and prepare the learner to resist pressure to engage in risk-taking behaviors (Morisky & Ebin, 2001). Examining smoking behavior, Cline (2003) also observes that social influence through everyday
interpersonal interactions in social networks may serve to disseminate health information or, conversely, to reinforce risk-taking behavior as a social norm as in the cases of smoking and other peer-influenced behaviors like sexual practices or drug use. In the case of HIV/AIDS stigma, Cline concludes that, “everyday interaction is significant in creating a "shared reality" of illnesses which she argues is “a socially constructed product and process of everyday talk” (p. 291). Such construction sometimes determines how the disease is addressed based on how social networks view it and its impact within their environment or network. The theory explains the potential of religious leaders as social influencers and the impact might have in addressing HIV/AIDS related issues like stigma and discrimination based on their socially constructed norms and their role in society. Social influence (normative and informational) can be a significant predisposing factor (direct or indirect) for group members' behavior, either in health-enhancing or non-enhancing directions. Fisher presents a model showing effects of social networks and reference groups on HIV/AIDS risk and preventive behavior, according to whether the social network's values and norms are of high or low consistency with preventive behaviors (Fisher, 1988). If preventive behavior is consistent with social norms, the network will be likely to exert social influence and exposure to supportive information facilitative of preventive behavior, and sanctions for lack of it. Likewise, if preventive behavior is inconsistent with a group's norms and values, the group is likely to exert pressure against participation in preventive behavior. Group norms and values can be specific (against smoking) or general (in favor of exercise). Groups exert pressure on their members to conform to the status quo (normative social influence) and wield their power by means of sanctions (rejection or perceived
future rejection) for nonconformity. There are a number of factors that may moderate the intensity of the network's response in protecting the status quo: these include the centrality of a value or behavior to the core of a group's assumptive world; the level of trust the group has for the entity that is proposing change; and the network's previous history of remaining intact while being able to integrate previously inconsistent values (Fisher, 1988). In addition to exerting normative influence, groups exert informational influence by being open or closed to information relevant to a particular topic. Group members serve as models for each other; they may provide exposure for members to general and specific information, and influence members' perceptions of personal vulnerability to negative outcomes. Various factors may moderate group members' reactions to network-based social influence: these include the size of the network (larger may be more influential); cohesiveness of the reference group (more cohesive being more influential); enmeshment of the individual with the reference group (higher being more influential); non-unanimity of group opinion (lessening pressure to conform); and perception that group opinion is changing (lessening pressure to conform). Cohesive, homogeneous networks can provide difficulty for group members who attempt to initiate new behaviors; reference groups attempt to protect their (status quo) norms and values from assault by both outsiders and insiders. Possible reasons for a network to resist change from within include "the fact that change that is inconsistent with the group's values may threaten the perceived veracity of group beliefs, the way the group views itself, the correctness of its behavior, or even the relations between group members (Fisher, 1988)." Social influence strategies include the use of slightly older peers to model and influence norms, as well as video representations of respected persons and tangible
rewards. Awareness of social pressures and resistance training (identify pressures, examine motivation behind pressures, respond to pressures, develop skills to resist), also known as psychological inoculation, are applications of social influence theory that are of relevance to multicultural health promotion. Walter, Vaughan and Cohall (1993) compared models of substance use among urban minority high school students. The socialization model of substance use was much more powerful than either the stress/strain or disaffiliation models in explaining past-year use of alcohol, cigarettes, and marijuana. However, certain variables derived from the stress/strain and disaffiliation models were important risk factors for the frequent use of these substances. Their findings suggest the need for further elucidation of the social influence process and development, implementation, and evaluation of intensive programs for high-risk youths.
2.8 Community AIDS Service Penang (CASP) Community AIDS Service Penang is a broad-based non-government volunteer organisation, established in 1989. CASP’s role is to help prevent the further spread of HIV and to provide emotional support to people living with HIV/AIDS.
3.0 METHODOLOGY This is a qualitative study that sought to gather information on the current faithbased HIV/AIDS stigma initiatives in Penang. The intent of qualitative research is to understand the deeper structure of the causes of HIV/AIDS stigma as well as the strategies to overcome it. Information was gathered through in-depth interview from Community AIDS Service Penang (CASP). Interview participant included Ms. Elizabeth, an Administrative Officer from CASP.
3.1 Intensive Interview An intensive interview was conducted with Ms. Elizabeth Thomas, an Administrative Officer on 29 February at CASP office. The interview sought to gather information related to their knowledge and understanding about HIV/AIDS stigma, causes of HIV/AIDS stigma, current interventions that they have initiated, selection of media/communication channel used by CASP in combating HIV/AIDS related stigma as well as the challenges faced in addressing HIV/AIDS stigma within their communities. Steps in interviewing are as follows, Stokes, pp.118: 1) Selection of interviewee: Ms. Elizabeth, an Administrative Officer from CASP. 2) Selection of Technique: Face to face Interview 3) Conduct background research to increase interviewer’s credibility and often make subjects more willing to speak more candidly 4)Plan the interview: create a list of questions and topics 5) Conduct the interview: record it and, at the same time, take notes on key comments 6) Transcribe the recording tapes 3.2 Analysis A qualitative analysis using descriptive and interpretative techniques followed the transcription of information. Once transcribed an analysis of participant responses, was done thematically.
4.0 FINDINGS AND DISCUSSION This section addresses key findings of the study, identified based on the recurring themes from the in-depth interview, the research questions that helped focus the study. The first question sought information on causes/ factors related to HIV/AIDS stigma, Community AIDS Service Penang (CASP) initiatives/strategies , communication
channel/media used in addressing the HIV/AIDS stigma issue in Penang and finally the challenges faced by CASP in combating HIV/AIDS related stigma. The researcher started by assessing the respondent’s perceptions on the causes/factors contributing to HIV/AIDS stigma. Based on the response, it was clear that the communities are aware of the HIV/AIDS related stigma.
4.1 Factors contributing to HIV/AIDS stigma Based on her response, there are five factors contributing to HIV/AIDS stigma among the public. i)People are scared of contracting HIV The communities are scared of getting contact with an HIV-positive person through simple touch (shaking hands, kiss on the cheek, sitting next to)eating food prepared by or which may have come in contact with those living with HIV and AIDS; breathing infected air; or using objects that someone living with HIV and AIDS had touched. There also continued to be mistaken beliefs on how AIDS is transmitted. There were beliefs that AIDS could be transmitted from using a public toilet, being coughed on by a person living with AIDS, sharing a drinking glass, or by donating blood. ii)Life threatening disease HIV/AIDS is a life-threatening disease, perceived to be contagious and threatening to the community. The disease is not well understood which contributes to fears.
iii) Religious and moral beliefs
Religious and moral beliefs lead to some people to think that HIV is a result of moral fault People living with HIV/AIDS are often thought of as being responsible for becoming infected. The fears associated with HIV transmission discussed in the previous section, assumptions made about the moral integrity of people living with AIDS were a central cause of stigma in this country and these assumptions underpin the tendency to blame people for their HIV infection as well as the shame felt at some stage almost universally by those living with HIV and AIDS and those associated with them. iv)They should be responsible for becoming infected People living with HIV are often seen as responsible for having contracted the disease, which increases feelings of guilt. Their behaviors may be seen as bad or wrong (for example sexual activity, injection drug use). The public think that the people who get HIV through sex and injecting illegal drugs deserve it because of their behavior. The HIV-related stigma that is associated with breaking sexual norms is heightened by the fact that people with HIV and AIDS are deemed responsible for their “deviant” sexual behavior. This attitude of blame justifies stigmatizing such an “irresponsible” person. v)Stigma Naming The media often oversimplified message of the HIV/AIDS by the media such as AIDS=DEATH. This message creates the belief that once a person has been infected there is no chance to live a positive and meaningful life. This message, that being diagnosed with HIV or AIDS is an immediate death sentence, contributes to much of the stigma and discrimination described above. It creates an image of people living with
HIV/AIDS as “walking skeletons” who have no future and nothing to contribute to the family or society. vi)Misinformation about HIV transmission HIV transmission is not well understood by many in the general population. Confusion or misinformation about how he became infected knowledge gaps and misinformation about HIV/AIDS and how it is transmitted need to be exposed to the community. Program messages should address the misconceptions about the prevalence of HIV infection; promote hope and compassion, and offer advice about and examples of positive living with HIV/AIDS.
4.2 Strategies in combating HIV/AIDS related stigma within CASP i) Intrapersonal Level People living with HIV/AIDS are trained to change their negative beliefs and interpretations. The elements in this approach are like education, symptom, stress management as well as exposure to symptoms. Clients were taught to identify and confront their negative thoughts such as guilt, shame, and self-deprecation, fear, anger, suicidal feelings, depression, self-isolation and were assisted to reframe the meaning of illness in a more constructive way. Many people living with HIV need to be to assisted to process internal stigma in individual counselling and in support groups so that they are good role models for others and are able to stand up to stigma when they experience it. CASP provides psychological and social support for those who are already infected by HIV/AIDS. CASP also plays the role in educating and give children who were infected with HIV/AIDS to learn how to live positively and should not be made to
feel guilty for what they have and guide them that it is not their fault that they have HIV/AIDS. ii) Interpersonal Level For all of these reasons, people living with HIV/AIDS find themselves being stigmatized by family, friends, employers, coworkers, landlords and service providers who fail to respect their dignity. CASP provides full counseling support – to people living with HIV/AIDS as well as their family members, friends and co-workers. a) Family Family plays in providing support and care for people living with HIV/AIDS. Family members can provide emotional and spiritual support to people living with HIV/AIDS and their cares. This support clearly helps those with HIV feel more positive about their lives and themselves. Here, CASP plays an important role by providing counseling to family members in accepting the facts so that they can start providing understanding and support to the ones living with HIV/AIDS. Families caring for people living with HIV/AIDS programmes can help families both to cope with the burden of care and also to recognize and modify their own stigmatizing behavior. b) Friends & Co-workers CASP also encourages discussion with friends, and colleagues about knowledge of HIV/AIDS stigma, HIV transmission and intervention strategies. Because HIV/AIDS does not discriminate, everyone is directly or indirectly affected by HIV/AIDS. CASP’s role is to keep the lines of communication open in order to tear down barriers, breaking isolation and fear. c) Support Group In CASP, support group meetings were held 2 months once for the people living with HIV/AIDS to face the impact of stigma and continually with their lives. Such a
sharing of experiences allows for community understanding of how HIV/AIDS impinges upon people’s lives, humanizes the disease and allows people to reflect upon how they and their society are responding to the HIV/AIDS stigma. Support group organized by CASP plays the role as friends or people in the circle by giving them moral support. Support groups help with personal growth, self-esteem and self-worth. Support groups facilitate a sharing of experiences, convey information, and give practical advice on a range of HIV wellness and treatment options. They assist with social confidence, improve an individual’s social capital by helping them to be a part of organisations, feel a sense of connection to their community, believe that they can impact social processes, and develop a sense of trust in social institutions and authorities. iii) Institutional Level a) Health Care Providers CASP also work closely with healthcare sectors to encourage them to review their policies, professional codes of conduct and practices to prevent and redress stigma. Health care providers were encouraged to treat people with HIV/AIDS mannerly and make people feel comfortable but not threatened. Each institution was encouraged to promote better understanding, to promote confidentiality and to reduce unfounded among nurses and doctors. b) Employers & Workplace The workplace is another environment in which stigma. CASP worked closely with factories/companies at the Free Trade Zone, Bayan Lepas such as Intel in promoting healthy workplace and eligibility for employment programmes by providing the human resources department an outline options for them to choose and adapt those that are relevant and attach them to the company. Employee orientation programmes also include issues of stigma and people’s right with respect to HIV/AIDS.
CASP also conducted briefing on stigma that AIDS sufferers face in their daily lives and what the community should do to support those living with AIDS. c) Media The media has the power to make a difference and needed to embrace its role to bring about behavior change by writing persuasively on the disease and by exploring new forms of advocacy with emphasis on prevention. CASP also work closely with mainstream media such as The Star to project positive image of people living with HIV/AIDS as well as to create awareness on CASP’s annual projects such as Fight AIDS but not people living with HIV/AIDS through newspaper announcements and newspaper coverage such as highlighted issues on urging policy makers to be more sensitive when drawing up policies with children who had HIV/AIDS. iv) Community Level There is a need to let people know the basic facts about HIV/AIDS transmission, non transmission, prevention and care. Ignorance of the facts leads to fear, which in turn adds to stigma. a)Education A lack of knowledge is a major contributing factor in the spread of HIV and the related stigma. Sex educations were held in primary and secondary schools in Penang by CASP to educate young people about HIV transmission and the important role of society in combating this epidemic. Such programmes targeting young people could significantly help curtail the HIV/AIDS stigma epidemic. Seminars and talks were held at Teacher’s Training College Tunku Bainun, School of Nursing, Lam Wah Ee Hospital Penang to name a few to educate the society’s role in combating HIV/AIDS stigma. Training and seminars for these institutions in
developing their approach to human rights and HIV/AIDS are needed, in HIV/AIDSrelated concerns. b) Awareness Annual event such as World AIDS Day were officiated by YB. Dr. Teng Hock Nan on the 1st December 2005 to educate the members of public on HIV/AIDS-related subjects as well as AIDS-related stigma. Many activities were held such as food sale, cultural dances, line dancing, quiz and many others. Public Awareness Project was held at TESCO Penang on 1st and 2nd of December to create HIV/AIDS related stigma awareness and to build knowledge among society on HIV transmission. A group of voluntary youth did the rounds of the centre by wearing sandwich boards with the “I am HIV Positive” quote to educate public on HIV transmission. International AIDS Memorial Day - the next important event for CASP was celebrated in year 2006 at Bayview Beach Hotel, Batu Feringgi to aware the public on HIV/AIDS related stigma and a candle light memorial will be held in memory of all the PLWHAs who have died. CASP also came out with a theme “Lighting the path for a better future” and a drama play entitled “Stigma and Discrimination the real killer in HIV/AIDS” The Red Ribbon Children’s Christmas Party organized by CASP was held in Paradise Sandy Bay and Youth Park, Penang. CASP came out with the idea for the part to “normalize” HIV/AIDS to the public, and to give the children who were infected with HIV/AIDS a chance to mingle freely with other children. This is to educate children who are not affected to feel less fear of children who are HIV positive. A workshop on compliancy to treatment for custodial care was also organized by CASP to staff members from Prisons Department, Welfare Department, Hospitals,
Serenti Rehabilitation Centers and Police department to educate staff members from public organisations. Other activities such as gathering of 100 youth at KOMTAR, Penang to educate the public on HIV/AIDS stigma and to fight against AIDS but not people living with HIV/AIDS epidemic. Other ctivities organized by CASP are such as production of educational material, sex-workers education programme at Kampung Makam for clients working around Lorong Baru, Halaman Melaka and about, HIV/AIDS education programme in workplace as well as public talks aimed at specific groups such as students, young people on HIV/AIDS stigma awareness. v) Public Policy Level Ensure that HIV/AIDS-related stigma subjects, including counselling skills, are included in the pre- and in-service training of political and religious leaders. a) Inter-religious Religious leaders are influential people in the community to be sensitized and educated about HIV/AIDS and involved to fight against HIV/AIDS stigma. Religious leaders also play an important role in educating the public and to uphold the rights and dignity of people infected with and affected by HIV/AIDS. While religion may play a role in perpetuating stigma, there is also evidence that religion and religious organizations provide valuable psychological support and comfort to people with HIV and their families and encourage non-stigmatizing behavior. People who have HIV themselves often turn to religion as a way of explaining why they have been “chosen” to suffer with HIV. Religion also helps people caring for those with HIV or AIDS to deal with the fear around HIV and contracting HIV.
b) Public Health Department Recently, CASP has worked closely with Jabatan Kesihatan Pulau Pinang for HIV/AIDS related stigma awareness campaign. The campaign was strongly supported by YB En. Subbaiyah, former State Health EXCO member whom gave CASP the fullest support in building a shelter for the homeless and abandoned ones. The shelter home project aimed to provide comfort and support to those living with HIV/AIDS whom need care in the final stages of the terminal illness. CASP worked closely with Department of Safety & Health to promote anti-stigma policies such as promoting safety work place policy at companies targeted at Bayan Lepas area and held HIV stigma forum to educate the fishermen at Bukit Gemuruh & Teluk Kumbar on 29 October 2007. c) Political Organisations CASP also work closely with political leaders from UMNO, MCA and MIC in combating the HIV/AIDS stigma. Continuing advocacy is needed for social change in response to HIV/AIDS related stigmatization. CASP work closely with these political organizations to provide education to public on people living with HIV/AIDS and fight directly for the rights of people living with HIV/AIDS at national level. CASP also organized the Women, Girls and HIV/AIDS programme on 5 March 2006 for the Puteri UMNO members which took place at Permatang Pauh.
4.3 Communication strategies within CASP in combating HIV/AIDS Stigma The next research question is to identify the communication strategies that CASP uses in addressing the HIV/AIDS stigma. According to Elizabeth, the initiatives which have been initiated are as the following: • Counseling Strategy – to people living with HIV/AIDS as well as their family members
Awareness Education for public and sex-workers Seminars and Workshops on compliancy to treatment for custodial care to staff from Prisons Department, Welfare Departments, Hospitals, Police Department and Serenti Rehabilitation Centre.
Forums that bring together health care providers to create a common message concerning stigma
Participatory workshops in which they can mix with people living with HIV/AIDS and talk about their concerns and fears
Annual events such as World AIDS Day on 1st December, Red Ribbon Children’s Christmas Party and AIDS Memorial Day (IAMD). One of the activities was candle-light memorial by the beach – in memory of all PLWHAs who have died.
Drama Play to fight against HIV/AIDS stigma such as “Stigma & Discrimination, the Real Killer in HIV/AIDS”
4.4 Communication channels /media used in combating HIV/AIDS related stigma Several communication methods/channels were used by CASP in order to reach a large target group at one time. With choosing the right communication method/ media, HIV/AIDS stigma messages can reach and the society can learn about the issue. It can then influence attitudes if the issues are carefully selected and presented in an appropriate way. Some ways that target audiences were reached include: i) Interpersonal Level – Telephone hot-lines, peer education, group counseling, suppprt group, one-to-one session, public service announcement ii) Institutional Level – Slides, health seminar/talks on hiring HIV positive employees, HIV/AIDS Stigma newsletter, announcements in local dailies
iii) Community Level – Poster, postcard, pamphlets, newspaper coverage, sandwich board, health fairs, music-entertainment event, World AIDS Day event, youth forums at school level, drama play iv) Public Policy Level – internet/web on (Malaysian AIDS Council), health training/talk for health care providers in the nation with Kementerian Kesihatan Malaysia. 4.5 CAMPAIGN PLANNING FRAMEWORK Interventions Level – With CASP’s involvement
Public Policy Level Community Level Institutional Level
Interpersonal Level Intrapersonal Level
Interventional Level of Influence Matrix for HIV/AIDS Stigma – Social Influence Theory Problem Inadequate access to affordable care & treatment leads to less health seeking behavior Strategy Provide easily accessible, affordable & comprehensive HIV/AIDS care and self-help counseling Rationale -Treatment of people living with HIV/AIDS improves their quality of life. -Treatment advances also allow People living with HIV/AIDS to be viewed as productive, contributing members of society and not as a burden. Level of Influence Intrapersonal Intervention Train them to change & modify negative beliefs, Increase self-esteem, self-help, stress prevention
It is common that who stigmatize can also be unaware that their actions are stigmatizing such as denial, ignorance
Help people affected by stigma develop the tools to identify, survive and combat it.
Build coping mechanisms and social support structures for people living with HIV/AIDS in order for them to share ways to restore or promote their health.
Personalizing HIV/AIDS. Most people have negative perceptions of people living with HIV/AIDS. They often view absence of noticeable illness as a sign of good health
Put a human face to the stigmatized
Stigma thrives on the perception of “otherness.” Putting the public in direct consistent contact with HIV-positive people who are willing to talk openly about stigma &societal perceptions can help humanize PLWHAs.
A lack of adequate Information influences stigma.
Provide knowledge and education to the public.
Awareness & Increasing public knowledge of HIV/AIDS in general helps address the misinformation that underlines stigma.
Counseling and training family members in a basic understanding of how HIV is transmitted or prevented, helping them access basic home nursing AIDS-care skills, build friends network, support group meetings -Encourage the media to project positive images of people living with HIV/AIDS & accurate info through announcements & news coverage. -Health care providers should be trained on attitude towards people living with HIV/AIDS. -Employer responsibility towards discrimination towards people affected/ company policy Targeted educational campaigns, peer education to educate public the transmission of HIV through World AIDS Day, Red Ribbon Children
Christmas Party and Int. AIDS Memorial Day. Malaysia does not have specific actively regulatory policies that address and prevent HIV/AIDS related stigma. Promote antistigma policies and enact relevant legal provisions that will ensure a safe protective environment for the stigmatized. Through legal and regulatory efforts, create a welcoming and safe environment for people living with HIV/AIDS, sending a message of social tolerance & inclusion. Public Policy To work closely with Department of Safety & Health to promote antistigma policies such as promoting safety work place policy. Work with political leaders such as UMNO, MCA and MIC to provide education to public on people living with HIV/AIDS and fight directly for the rights of people living with HIV/AIDS at national level.
Public Policy Level – work closely with Malaysian AIDS Council (MAC) in health fairs and education, internet/web health education on MAC webpage , health training/talk to health care providers in the nation, Kementerian Kesihatan Malaysia Community Level – Poster, postcard, pamphlets, newspaper coverage, sandwich board, health fairs, music-entertainment event, World AIDS Day event, stage drama, youth forums at school level Institutional Level – Slides, health seminar/talks on hiring HIV positive employees, HIV/AIDS Stigma newsletter, announcements Interpersonal Level – Telephone hot-lines, peer education, group counseling, one-to-one session, public service announcement on providing free counseling, support group Intrapersonal Level Communication mediums/media used by CASP in combating HIV/AIDS Stigma
4.6 Challenges faced by CASP to Combating HIV/AIDS Stigma Based on the responses, it was clear that respondent was aware of the challenges faced by CASP in combating HIV/AIDS Stigma in the region and in their local communities. Challenges highlighted are as follows:
Stigma against people living with HIV/AIDS is faced everywhere: in the family, at school, in the workplace, in health care settings, in the community and in traveling. Stigma constitutes one of the greatest barriers, if not the greatest barrier, for effective response to the epidemic. Because of stigma, people at risk do not obtain information about preventive measures, and people living with HIV/AIDS do not get adequate care. The society need to be encouraged to think critically about this belief, provide them with accurate updated HIV transmission information and to change it. CASP’s role is to educate the public to challenge HIV/AIDS stigma. Employers Requirement
There is still a lot of discrimination against people living with HIV/AIDS, especially in the workplace like the Free Trade Zones at Bayan Lepas area. Many employers see infected persons as liabilities. They require potential employees to take HIV tests and then hire based on the results. People with HIV often find that they cannot get jobs. Others find themselves harassed or isolated at work. Some people lose their jobs after their employers find out that they have HIV/AIDS. Employers should change their judging and stigmatizing habits. The workplace is an ideal setting for HIV/AIDS prevention programmes, as well as for the provision of treatment, care and support to employees infected and affected by HIV/AIDS.
Public Sector Commitment
Much progress has taken place in the level of political commitment in our country. However, it has still not reached the level necessary for a strong and effective response to HIV/AIDS Stigma. Stigma may prevent decision-makers from declaring their commitment. Lack of sufficient and reliable data on the HIV epidemic in a country, because of weak surveillance systems, will prevent the strong and effective advocacy necessary to obtain the commitment of leaders and senior politicians. • Religious Leader Commitment
Most of the religious representatives in our country use to try to get back this lost moral authority by saying that people with HIV/AIDS are guilty of sin and immorality and their behaviour. Programmes need to include critical thinking about the way in which social institutions such as religions system in our country do or do not contribute to stigma. Religious representatives can offer prayers and support to infected and affected individuals and families.
5.0 CONCLUSION Stigma connected with HIV/AIDS creates a vicious cycle. Fear causes stigma. Stigma create such a negative image of people who have become infected with HIV/AIDS and such a difficult life for them that people become even more fearful of the disease. AIDS weakens the body and makes people more vulnerable to diseases and infections. Negative behavior increases people’s vulnerability. However, there are steps that can be taken so that people who have HIV/AIDS can live healthy and positive lives and reduce their vulnerability. If we change the message about HIV/AIDS to include information about how infected people can live with it and how affected people can relate to them; if we make sure this message reaches everyone; and if we make sure leaders and role models are involved in breaking down the stigma, we can reduce the spread and impact of HIV/AIDS.
THE COVERAGE OF HIV/AIDS STIGMA IN LOCAL MEDIA – A CONTENT ANALYSIS OF NEW STRAITS TIMES 1.0 INTRODUCTION In the early 1960’s, the dominant belief was that media messages would always be followed by the adoption of the communicated ideas through the so called "magic bullet theory". This dominant belief in the impact of media has now been modified and the belief is that the media do not have such complete control over the social change process. DeFluer and Ball-Rokeach (1988, pp. 218) have however, noted that the mass media still play a major role in the social learning process and have influence on how individuals acquire new ideas, attitudes, and change orientation in society. To succeed in the above goal, however, the media must have a coherent strategy on the coverage of HIV/AIDS stigma. Some attempts at researching media coverage of HIV/AIDS have already been made in other countries, particularly developed countries, but few studies have come out of the developing countries (Childers, 1988; Lester, 1992; Basil and Brown, 1994). An "action plan" of purposeful and impact-bearing information dissemination can only emerge after an assessment of current practices of media in the coverage of HIV/AIDS stigma in a specific country so as to identify strengths, weaknesses, and gaps in the dissemination of information on AIDS stigma.
1.1 The Role of Media in Combating HIV/AIDS Related Stigma The media is a powerful tool that can be extremely effective in shaping public understanding and behavior towards any particular subject. The power of the media is such that anyone who wants to influence others uses it.
However, an ill-informed media can be dangerous to society. All the same, people with divergent ideas often use the media to communicate their positions and, in some cases, people use opposing medium to create supremacy of their view. In the context of HIV/AIDS-related stigma, the media has come a long way. They are no longer portraying a fatalistic view, using unacceptable, often condemning language. Today, the media is a relatively compassionate environment, where they try to focus on the impact of HIV/AIDS and its social and economic consequences. For these and many other reasons, the media should be ably used as a critical positive ally. The media is an ally that can take our messages across the community spectrum and drum up support for our ideas and endeavors to combat stigma. The media can be a positive ally in informing our communities’ activities which get people to identify, analyze and condemn stigma in their communities. 1.2 Purpose of study Given the seriousness of the HIV/AIDS stigma in Malaysia and the constructive role the media can play, the purpose of this study was to examine the coverage of HIV/AIDS stigma in Malaysian media and make recommendations for designing a media strategy to combat the pandemic. The study also examined locally produced materials supporting HIV/AIDS stigma campaigns to assess and evaluate the materials and make recommendations for improvement. 1.3 Research Question The following questions were formulated to provide guidance for this study: 1) To what extent have Malaysian media covered the general portrayal of content on HIV/AIDS stigma in Malaysia?
2) What angles have the media given in their coverage of the general issues on HIV/AIDS related stigma? 3) What angles have the media given in their coverage of the expression on HIV/AIDS related stigma? 1.4 Conceptualization From the above research questions, researcher can derive a number of key concepts or terms: 1) Coverage – refers to the presentation by the media of stories on HIV/AIDS stigma. Coverage was measured in frequencies. 2) Aspects or angle – refers to the central messages which are conveyed during the handling of a factor or content category. Interpretative and qualitative descriptions are used to present the various aspects found in the coverage of each content category. 3) Content categories – refers to the key terms or factors found in a media story on HIV/AIDS stigma. This was measured in frequency of occurrence.
2.0 METHODOLOGY The research method chosen to analyze media coverage of HIV/AIDS stigma is content analysis. The appropriateness of content analysis for this type of study is supported by many researchers in the social sciences. Adams and Schvaneveldt (1991: 299) point out that: “content analysis is a research tool for the scientific study of speeches, records, and other written communications to determine key ideas, themes, words, or other messages contained in the record”. Supporting the above, Holsti (1969) has defined content analysis as a procedure for applying the scientific method to documentary evidence and Krippendorff (1980, PP.7) asserts that “content analysis is one of the most important research techniques in the social sciences; it seeks to
understand data not as a collection of physical events but as symbolic phenomena and to approach their analysis unobtrusively”. It would appear, therefore, that the choice of content analysis for this study is supported by other researchers in the social sciences including mass communications.
2.1 Sample Newspaper – The New Straits Times Press, which is the mainstream newspaper in Malaysia with national cove rage, were chosen for the study. The New Straits Times newspaper was selected because of its ranking in Malaysia media and has some influence on both policy makers and the general public. The content analysis study covered a period of one year, from January 2007 to December 2007. All the copies of the newspaper articles were content analyzed.
3.0 RESULTS AND DISCUSSION 3.1 Yearly coverage of HIV/AIDS related Stigma The data collected showed there was a total of 10 articles from New Straits Times newspaper per year. Given the importance of the subject to the issue of combating HIV/AIDS stigma in Malaysia, this average is considered to be low.
3.2 Portrayal of general HIV/AIDS Stigma content in the media The categories which were covered in the sampled issues were divided into two groups: i) consists of stories oriented towards general issues, with some bias towards HIV/AIDS stigma combat ion and ii) consists of stories on effects of HIV/AIDS stigma.
General issues on HIV/AIDS stigma
The category which featured most frequently in the media stories was HIV/AIDS stigma combat ion. In most cases, the concept was portrayed as of critical importance in stemming the spread of HIV/AIDS stigmatization. There was a strong assumption that awareness of HIV/AIDS stigma by members of the public would lead to a certain positive behavior and avoidance of other behaviors which lead to contracting HIV/AIDS stigma. However, in some cases it was also reported that awareness of HIV/AIDS stigma has not led to changed public’s behavior. • Discrimination
This is a topic founded in the newspaper throughout the whole year. The newspaper articles indicated disapproval of the rejection of people living with HIV/AIDS. Based on the conclusion from the stories, the fear associating with people living with HIV/AIDS is quite great. However, the media did not provide substantive information to address the fear of the public – that any contact with people living with HIV/AIDS would result in getting infected. In one issue, reference was made to “In fear of society’s discrimination”, the society is the biggest fear in combating HIV/AIDS. The media took the stance of advocacy on behalf of HIV/AIDS people. This content category also focused on communities’ discrimination towards the people living with HIV/AIDS. One of the article reported that neighbours and even family have refused to help to clean the body. Sometimes, families don’t want to involve others from the village, hoping to avoid discovery and stigma. The taboo is still very strong in these communities.
This content category was more frequently mentioned in the newspaper. The angle taken in most cases was to portray women as sex-workers are more likely to catch HIV/AIDS and difficult to make a living. Given the situations portrayed in the media, sex-workers are facing issues in combating HIV/AIDS stigma. The media were, however not very successful when it came to addressing this issue in the fight against HIV/AIDS stigma. For example, the strategies of combating this pandemic were hardly covered. In addition, apart from pointing out that there are possibilities that sex-workers are hardly get hired for being “sick”, there was no detailed discussion of how to prevent this issue. There was frequent mention of sex-workers whom are facing issues on how the society looked at them in. The media reported that most of the society looked at them as “pariah” who were not worthy of respect. Because of lack of self-esteem, the women also felt useless. • Lack of Knowledge
This concept was portrayed from the aspect of young people in combating HIV/AIDS stigma. The media reported that the lack of knowledge is a major contributing factor in the spread of HIV and the related stigma, with cultural sensitivities often preventing an open discussion. • Mandatory Testing
The portrayal of this content category had a low frequency of mention in the newspaper. There is only one media coverage in the newspaper in the year 2007. The emphasis in the report was on “call to stop mandatory testing” for foreign workers to determine their eligibility for employment rather than reporting on the prolonging life of people living HIV/AIDS stigma in the country.
This content category was portrayed in terms of society’s support in attempt to combating HIV/AIDS stigma. The society plays an important role by giving morale support and learns to provide love, care and support for those affected with HIV/AIDS. As quoted from an interviewee commenting on society’s support towards people living with HIV/AIDS, “People living with HIV/AIDS (PWA) do not need sympathy or judgment, they need understanding and support”. On 29 November 2007, this was quoted from Dr. Adeeba Kamarulzaman, President of Malaysian AIDS Council (MAC) in News Straits Times, “The mark of a civilized society is when the people who are well-off choose to take care of the less privileged”. • Family’s Commitment
This was portrayed as a necessary addition to society’s level of support in combating HIV/AIDS stigma. The media reported that the family’s commitment is important in combating this issue. From the evidence found in the media stories, an interviewee mentioned that, “I won’t let the virus beat me. I was depressed when I found out that I was HIV positive. But I have the best parents in the world and they have helped me find new hope. I’ve learnt that my self-esteem is precious, so are my dreams”. ii) The expressions of HIV/AIDS stigma
The portrayal of the expressions of HIV/AIDS stigma was analyzed separately. The assumption was that the frequency of appearance of the HIV/AIDS expressions in the sampled issues would be higher than of the general issues. The assumption however was proven correct, as the coverage of the effects of HIV/AIDS stigma far surpassed the coverage on the general issues of HIV/AIDS stigma.
One angle of presentation was in relation to shameful. In the New Straits Times of December 1, 2007, a writer quotes an interviewee commenting on this effect of stigma: “They won’t admit that anyone in their family had AIDS. They are afraid and ashamed.” • Loss of livelihood/future
Loss of livelihood/future was also portrayed in relation to HIV/AIDS stigma. Based on this concept portrayed in the newspaper, most people living with HIV/AIDS are sexworkers whom lost of livelihood and future. The society looked at them with no respect and many of them did not even try to leave the industry as they believed they could not do anything else. • Isolation
This concept was portrayed in the newspaper whereby it reported a case whereby families do not want to report that they are caring for HIV/AIDS orphans because they are ashamed of their relatives who have affected with HIV/AIDS. This taboo is still very strong in this community whereby those living with HIV/AIDS are abandonment by their family members and relatives. • Loss of identity & role
This content category focused on the adverse expression of HIV/AIDS pandemic on societal level. Here, people living with HIV/AIDS were viewed and treated by the society as having no future and loss of power, respect and standing in the society. The media gave several examples of “loss of identity and role” in the society and one of the example: “Worrying that other people might found out the status or that other people will think it is their right to know about me being HIV positive”.
4.0 CONCLUSION The study content analyzed the issues of New Straits Times Press in the period of one year from January 2007 to December 2007. New Straits Times Press had 10 stories related to HIV/AIDS stigma issue based on its yearly coverage. In this period, it was found that the patterns of coverage of HIV/AIDS stigma stories were focusing on the expression of HIV/AIDS stigma epidemic instead of policy and awareness in overcoming HIV/AIDS related stigma. The New Straits Times coverage of HIV/AIDS stigma is generally low, superficial, and not sustained long enough to create the necessary impact in terms of awareness and change of behaviour. The general impression is that the New Straits Times tended to have more feature stories on HIV infection through sex-workers and discrimination among the society towards them rather than focusing on drug users. Many of the sex-workers are unable to leave the job due to the stigma of the “job” with some forced to stay after being infected with HIV. One conclusion from this pattern of coverage is that most of the stories were of the spot news variety, focusing on the expression of HIV/AIDS related stigma but not the specific role in overcoming the epidemic. Most stories in the New Straits Times mentioned that HIV/AIDS stigma awareness is very low. However, the finding did not reveal any certain portrayal to create public awareness on HIV/AIDS related stigma. The effect of the coverage did not stressed on the causes of HIV/AIDS related stigma and how those infected with HIV/AIDS plan their survival strategies in addressing to this pandemic. The messages portrayed in the News Straits Times are also lack of consistency in giving a positive and hopeful view of people living with HIV/AIDS.
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