(UN<strong>AIDS</strong> 2005).(UN<strong>AIDS</strong> 2000):The factors which contribute to HIV/<strong>AIDS</strong>-related stigma are HIV/<strong>AIDS</strong> is a life-threatening disease People are scared of contracting HIV The disease's is associated with behaviours (such as sex between men and injectingdrug-use) that are already stigmatised in many societies People living with HIV/<strong>AIDS</strong> are often thought of as being responsible for becominginfected Religious or moral beliefs lead some people to believe that having HIV/<strong>AIDS</strong> is theresult of moral fault (such as promiscuity or 'deviant sex') that deserves to bepunished.Resolution 49/1999 of the UN Commission on Human Rights reaffirms that“Discrimination on the basis of HIV or <strong>AIDS</strong> status, actual or presumed, is prohibited byexisting international human rights standards, and that the term ‘other status’ in nondiscriminationhuman rights texts should be interpreted to cover health status, includingHIV/<strong>AIDS</strong>” (UN<strong>AIDS</strong> 2000). Stigmatizing and discriminating actions manifest at thefamily and community settings, and institutional settings. Examples at the family andcommunity level include ostracization, such as the practice of forcing women to return totheir family after being diagnosed HIV-positive, when they become ill or after theirpartner has died of <strong>AIDS</strong>; shunning and avoiding everyday contact; verbal harassment;physical violence; verbal discrediting and blaming; gossip; and denial of traditionalfuneral rites. Examples at the institutional settings include: Health-care services: reduced standard of care, denial of access to care and treatment,HIV testing without consent, breaches of confidentiality including identifyingsomeone as HIV-positive to relatives and outside agencies, negative attitudes anddegrading practices by healthcare workers Workplace: denial of employment based on HIV-positive status, compulsory HIVtesting, exclusion of HIV-positive individuals from pension schemes or medicalbenefits Schools: denial of entry to HIV-affected children, or dismissal of teachers Prisons: mandatory segregation of HIV-positive individuals, exclusion fromcollective activities (UN<strong>AIDS</strong> 2005).In <strong>this</strong> study, there was evidence of most of the above forms of stigmatization anddiscrimination, more so at the institutional level, and especially in healthcare and socialwelfare settings, i.e., institutions where PLHIV interact with on a regular basis because ofone or other aspect related to HIV. Overall, there were fewer expressions ofstigmatization at the family and community level but <strong>this</strong> was possibly because of limiteddisclosure. Many of the respondents do not disclose their HIV status, hence, other people– family members, friends and neighbours - are unaware. As noted by one participant,the fear of stigma and discrimination is worse than having the virus itself:“They [people living with HIV/<strong>AIDS</strong>] are more scared of thediscrimination, stigma instead of the virus itself”(Male, 36yrs, Upper secondary education, DU)78
The exception appears to be in East Malaysia where the HIV-positive study participants,comprising infected partners and sex workers, appear to be unconditionally accepted bytheir families and their community insofar as very few narrate negative experiences. Afew reasons may be speculated for <strong>this</strong> acceptance: (1) it could be that they have thelarger problem of poverty to contend with on a daily basis; (2) there is less exposure topast IEC campaigns which have resulted in perpetrating the stigma attached to HIVthrough associations with death, sin, punishment, perversion, etc.; (3) the relatively longdistances between their residence and the hospitals and other institutions where theirstatus is known makes it easier to keep their HIV confidential and unknown to theircommunity. Which of these possible reasons apply, if any, cannot be ascertained withouta study into the attitudes of the local communities in East Malaysia. Some of the samereasons, notably, the limited disclosure and relative isolation from society at large, mayalso explain the apparent lack of stigmatization and discrimination faced by refugees in<strong>this</strong> study.For other participants in Peninsular Malaysia, recollections of poor treatment by thehealthcare profession, particularly nurses, testify to the continued stigma attached to HIV,even by those who are most informed about the disease. As postulated by one participant(described under the Health section), some people remain unconvinced about theevidence on HIV, thus, they remain wary about the ways it can be transmitted. Hence,stigmatizing and discriminatory reactions continue to manifest despite years of IEC:“Itu yang bikin stress tu. Saya selalu masuk hospital kan? Sometimes,ada setengah setengah Sister tu yang jujur…..aaah… Ada setengahsetengah Sister juga, dia orang kasi sedia satu…..satu bekas untuk…apa.It’s ok dia orang kasi sedia. Memang saya tahu, tapi jangan lah cakapcakap macam engkau begini begini…..macam kau tu nanti mau jangkitsema orang, gitu. Itu saya rasa macam saya tidak mau….tu lah, kadangkadang, saya tidak tahan tinggal di wad. Saya minta pulang. Saya bilangmacam kita ni….macam….kadang kadang kita sini ada penyakit tinggisatu kali, semua kena kah satu wad…saya pernah jawab gitu. So, janganbegitu tapi itulah. Tapi, ada juga yang bagus juga lah. Yang bagus tu,kita rasa happy, jadi kita cepat baik. Tapi, kalau macam yang tidak ok ni,sudahlah kita stress, kita sakit, tambah lagi kita stress. Macam mana maubaik?”(“That is the cause of stress. I am often admitted in hospital, right?Sometimes, there are some nurses who are honest….there are some nursesalso who; they give you a….a basin for….whatever. It’s ok [for them] toprovide <strong>this</strong>. I do know, but don’t say to us you are like <strong>this</strong>….like I wantto infect others, like that. That’s why, I feel I don’t want…that’s why,sometimes, I can’t stand being in the ward. I ask to go home [bedischarged]. I said like we….like….sometimes we have serious illnessone time, [will] the illness spread to everyone in the ward, I’ve answeredthat way. But, there are also those who are good. We feel happy withthose who are good, so we recover quickly. But, with those who are notokay, we are already stressed, already sick; we have more stress. How canwe recover?”)(Female, 29yrs, Upper secondary education, Infected Partner)79
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Table of ContentsPROJECT TEAM 5ACKN
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Information received at the time of
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AcknowledgementsThis research is fu
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The main findings from the qualitat
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school or work, transport costs for
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is that the large majority of women
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In fact, special surveys conducted
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ObjectivesThe specific objectives o
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have been rejected by their immedia
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eport) that his/her healthcare (or
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CommunityKnowledge/awareness of HIV
- Page 28 and 29: Framework of analysisA descriptive
- Page 30 and 31: urban and a rural community. In all
- Page 32 and 33: medication, the physical health com
- Page 34 and 35: husbands working in other places wh
- Page 36 and 37: (“And then, this doctor, he/she v
- Page 38 and 39: their food. Nurses and their attend
- Page 40 and 41: “Because we take drugs….no time
- Page 42 and 43: The same claim to 100% condom use w
- Page 44 and 45: in asking them to use condoms, even
- Page 46 and 47: “Normally…..normally, memang ma
- Page 48 and 49: (“But I continued using at that t
- Page 50 and 51: “Buat pada permulaannya, saya mem
- Page 52 and 53: However, not all experiences with d
- Page 54 and 55: yang amat sangat. Tak pernah I rasa
- Page 56 and 57: long term fears and anxieties. The
- Page 58 and 59: “The first time I heard from the
- Page 60 and 61: handset, I too, have handset. Some
- Page 62 and 63: have been turning to God since and
- Page 64 and 65: felt I’m indecent. But, at one ti
- Page 66 and 67: would certainly want to continue wo
- Page 68 and 69: (Transgender, 53 yrs, Upper seconda
- Page 70 and 71: “Sometimes I didn’t get enough
- Page 72 and 73: positively portray people living wi
- Page 74 and 75: “After my diagnosis...I’ll pay
- Page 76 and 77: not know or might not want to be bo
- Page 80 and 81: “…bawak saya pergi hospital. An
- Page 82 and 83: erpindah ke tempat lain makin lama.
- Page 84 and 85: pada HIV itu, dia nampak penagih. S
- Page 86 and 87: (Male, 49yrs, University education,
- Page 88 and 89: However this association with the n
- Page 90 and 91: “…..depends on who is the perso
- Page 92 and 93: (“I …my experience society will
- Page 94 and 95: (“Can…can marry, no problem. Bu
- Page 96 and 97: Harm Reduction programmeSome urban
- Page 98 and 99: (“In my opinion such campaign sta
- Page 100 and 101: Table 2aDistribution of Respondents
- Page 102 and 103: female sex workers (seven out of 13
- Page 104 and 105: NO. OF LIVING PARENTSNobody 7 1 1 2
- Page 106 and 107: tested in drug rehabilitation cente
- Page 108 and 109: GroupsDUHetero-SexuallyInfectedMenT
- Page 110 and 111: y the Ministry of Health (74.2%) or
- Page 113 and 114: Child CareYes, often 0 0 0 1 0 1 0
- Page 115 and 116: GroupsDUHetero-SexuallyInfectedMenT
- Page 117 and 118: Figure 5: Percentage of Respondents
- Page 119 and 120: GroupsTable 12aEmotional Problems E
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- Page 123 and 124: GroupsTable 15How They Cope With Th
- Page 125 and 126: Table 18Percentage Of Respondents W
- Page 127 and 128: esponsible for their families. As m
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In this study, it took more effort
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eing transgender and sex worker whe
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denies them social and economic opp
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working towards their future, who c
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ReferencesAidsmeds.com (2006). Curr
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Sen G, George A, Ostlin P (2002). E
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Annex II: FGD Guide for PLHIV Group
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♦ Spouse: marital/sexual relation
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I. Attitudes and Perceptions relate
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I. HIV/AIDS Knowledge‣ What did y
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Annex V: Rapid Needs Assessment Que
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Types of support or responsibilityM
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Please tick (√)one onlyIf yes,ple
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more help would be useful for you i
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Annex VI: Ethics Approval Letter157