not know or might not want to be bothered then the body would be kept for 14 days, afterwhich the body could be claimed by non-family. They want <strong>this</strong> policy/practice to bechanged so that a recognized HIV/<strong>AIDS</strong> NGO can apply to claim the body so that thedeceased can be buried or given last rites according to respective cultures in a dignifiedmanner. The Muslims felt very strongly since it is required that the body need to beburied before sunset.Not surprisingly, majority of the infected women respondents asked if the governmentcould help with free medication and treatment since they seemed the most in need andeconomically rather vulnerable group in the study.“Kenapa HIV kena bayar...mmm...sekarang ni saya kena bekerjasendiri...kalau tak ada kerja memang tak ada duit...kalau saya sakit?Sekarang ni saya masih sihat...saya tanggung dua orang anak...yangmasih bersekolah...Kalau ada mana-mana pihak yang boleh mengadukanbenda ini kepada kerajaan...”(“Why HIV (patients) have to pay...mmm...now I have to work alone...ifnot working surely no money...if I’m sick? Now I’m still healthy...I’ve tocare for two children...who are still schooling...If there’s any agency thatcan bring <strong>this</strong> matter up to the government...”)(Female, 46 yrs, Upper secondary education, Infected Partner)As the DU respondents from the urban location tended to be living in homes, some ofthem expressed there should be an “after-care” program once they leave the homes.“In <strong>this</strong> whole program is...something like “after-care”...after-careprogram is very less. Meaning like you know...we feel safe inside here.But what if we go out, what’s going to happen to us, you know, are wegoing to face again the same you know, back to square one. Start back thediscrimination again...or is that going to have a program. I feel like youknow like ah...what they are doing with the people with the addictionproblem you know, they have like centres where people can go and for...torecharge back your energy you know to move on and to fight your life, issomething like that. You know, they should have like more places forpeople with HIV to get access, you know, to counselling, to motivation, orto have a place where they can...sit and they can talk and they can feelamong themselves you know free...”(Male, 36 yrs, Upper secondary education, DU)The transgender sex workers are another group that are also economically vulnerable andpowerless. Since they encounter double discrimination, many of them expressed theywould welcome more government, statutory bodies, NGOs or charitable organisations tocome forward to help provide resources for their medication and treatment in particular.A number of them also asked if other resources like employment and temporary sheltercould be made available. Since many of them were either sheltered or working forWAKE at the time of the study, they were grateful to such an organisation providingthese resources and hoped there could be more of such set-ups or government couldcollaborate with such NGOs.76
PLHIV participationIn the discussion on problems faced in trying to withdraw money from the EPF, SOCSOor pension schemes, it was said these problems arose because people who are HIV+ arenot involved or do not participate in policymaking at the appropriate levels.“Because we are...we are never...we are never...we are never called tomake any decisions on HIV and <strong>AIDS</strong>. Whatever decisions...it’s peoplewho are handling...I mean...let me be out la. I mean it’s Malaysian AidsCouncil. In MAC, there’s nobody who’s living with HIV and <strong>AIDS</strong>...whois working there. So, I mean where...where can we...voice our issues,needs and concerns?”(Male, 50 yrs, Upper secondary education, DU)On the other hand, several respondents said they were already involved in the variousHIV-related NGOs, such as, KLASS, PENGASIH, Pink Triangle. They either work orare volunteers. Much of the participation is in terms of helping to disseminateinformation on HIV/<strong>AIDS</strong> in public places or volunteer in the hospitals to help thosediagnosed with HIV/<strong>AIDS</strong>. A couple of them, especially the men, even had expressedwillingness to come out in the public, on the TV, to share their own experiences.“Like joining KLASS and as one of their members, they will call me forhelping them in some activities...I’m already being a volunteer at GH(General Hospital) for 2 years. Go through lots of things and I’m happilyseeing everyone doing well now.”(Male, 36 yrs, Primary education, Heterosexual)“Should get involved only when about to get the medication. IKHLAS.Pink Triangle and all that...I’m willing to help. I really willing to go openlyand say I am HIV positive...The HIV (positive) should be the one of thepolicymakers because they know how it feels, they know what ishappening because it is happening to them.”(Male, 44 yrs, Upper secondary education, DU)Generally, the male respondents from the heterosexual and MSM groups were moreinvolved in participation in programs and advocacy. This could be due to their level ofconsciousness and empowerment given their higher levels of education and economiccapacity.Stigmatization and discriminationIt is well recognised that the stigma attached to HIV and <strong>AIDS</strong>, and associateddiscrimination and other violations of human rights against those infected or affected byit, undermines national responses in prevention, care, treatment and support. It is alsorecognised that HIV-related stigma, in fact, has promoted the transmission of HIV andexacerbated its multi-dimensional negative impact (UN<strong>AIDS</strong> 2005). It adds to thestigma already attached to behaviours judged as deviant, abnormal, immoral orirresponsible, such as drug use, commercial sex work, transgender and homosexualpractices, or groups that are prejudiced against, such as, prisoners and migrants77
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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
- Page 26 and 27: 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 78 and 79: (UNAIDS 2005).(UNAIDS 2000):The fac
- 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
- Page 121 and 122: Stigmatization and how it has affec
- Page 123 and 124: GroupsTable 15How They Cope With Th
- Page 125 and 126: Table 18Percentage Of Respondents W
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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