yang amat sangat. Tak pernah I rasa hidup macam tu, walaupun family Iorang kaya, tapi, dia orang tak ada ambil berat tentang I. Apabila diasisihkan kita dah keadaan kita memerlukan kecil hati itu akanberpanjangan kan. I run my own life alone. Jadi, I bawa diri. Dudukmenyewa bilik. I rather stay with my friends at Chow Kit there in a room.Kawan ok”(“Ok, I’m a Muslim. But since I got to know that I have <strong>this</strong> disease, mylife change, totally change. My relationship with my friends, with familytotally out. OK, the people can say they care but in actual fact, they arenot. Especially those who have more knowledge about HIV/<strong>AIDS</strong>. So, Ifeel now I am out of the family. Even now, I felt that life is hard,extremely difficult. Never have I experienced <strong>this</strong> before, although myfamily is rich, they are not concerned about me. When they cut us off andwe are really in need, the hurt remains and runs deep. So, I isolate myself.Stay in a rented room. I rather stay with my friends in a room at Chow Kit.Friends [are] ok”(Transgender, 53yrs, Upper secondary education, SW)Some do get support (moral and physical) from family members in their struggle againstHIV.“Semangat saya, saya tidak pernah putus asa dengan keluarga saya.Mereka tidak asingkan saya. Pergaulan sama sahaja….orang sihatdengan tidak sihat. Mak lah tempat mengadu”(“My will power, I never give up with my family. They didn’t isolate me.Our relationship is still the same…healthy people with the sick people.My mum is my pillar of strength”)(Female, 39yrs, Lower secondary education, Infected Partner)“My family they all knew about it. After they send me to Pelangi foraround 8-9 months, I started to recover from sitting at wheelchair, thenusing walking stick, after not using it anymore. I become fatter and thenbecome handsome like <strong>this</strong> now. They talked to my father and let himknow of my situation. My family helped me a lot”(Male, 42yrs, Primary education, Heterosexual)“My mum cried. My father like a man lah, keep quiet. He never saidanything lah until today. Only my mum will ask. Have you done thecheck-up? How long do you do your check-up? Have you taken themedication? Any medication can cure <strong>this</strong> disease or not? How come nomedication can cure <strong>this</strong> disease, she is still asking. Initially I feelpressured lah, but now not really. They just treat me like normal”(Male, 36yrs, University education, MSM)“My wife and my parents knew about it. They told me to come back toMyanmar, but I refused it”(Male, 30yrs, No formal education, Refugee)54
“They told me that they still love me, they pray for me. I alwaysencourage to my wife”(Male, 29yrs, Primary education, Refugee)Among friends, particularly those who have the same problem, they are easily acceptable.However, being honest with one’s HIV status also render problem, for example, rejectionfrom friends and colleagues.“People that we mix with are drug addicts and they are our only friends. Itdoesn’t affect our relationship and I think most of them also HIV positive.Sometimes, we tend to think that drug addicts are more acceptable. Theyaccept you openly. In fact, prison mates and the Serentiinmates…ah…they can accept you even you are HIV positive. Even youare <strong>AIDS</strong>. Because if you go to these centre, you don’t see themostracizing. The HIV/<strong>AIDS</strong> patient, they have got no prejudice aroundthese things. They are the birds of the same feather”(Male, 44yrs, Upper secondary education, DU)“You know like my case, when I was isolated, you know, when I wasrejected by my colleagues, working colleagues because I was working andeverything now for me tell people who, you know, normal people who arenot HIV and everything to tell them I am HIV and everything is I have tothink 2-3 times. The painful experience that we have gone through bybeing honest by telling that I’m HIV and everything”(Male, 36yrs, Upper secondary education, DU)Some of the participants will shy away from social relationships and interactions, for fearof exposing their status or being asked too many questions about themselves or theirhealth status. Thus, social relationships are avoided.“I seldom meet my friends…worried they will spread and tell others. I goout with them if they look for me, or else I won’t take initiative to findthem. They said why I’m so think, do I do diet and take weight lossmedicine. But, I tell them I am not. I never go anywhere since have <strong>this</strong>disease because friends always keep asking why I look thin”(Female, 34yrs, Primary education, Infected Partner)“When we meet friends, ask how are you...they ask many, manyquestions, so, we don’t like give them the answer. We don’t know how togive them an answer. I moved back to kampong. I hide from others, fromthe town people. Lebih baik jangan berkawan (better not make anyfriends)”(Female, 40yrs, Lower secondary education, SW)Psychological and emotional impactPeople living with HIV/<strong>AIDS</strong> faced significant impact on their psychological well-being.This psychological impact comes from various sources, from disclosure and itsconsequences, from silencing themselves, from stigma and discrimination that theyexperienced, worries about their health, impending death and from their own personal55
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Table of ContentsPROJECT TEAM 5ACKN
- Page 4 and 5: Information received at the time of
- Page 6 and 7: AcknowledgementsThis research is fu
- Page 9: The main findings from the qualitat
- Page 14 and 15: school or work, transport costs for
- Page 16 and 17: is that the large majority of women
- Page 18 and 19: In fact, special surveys conducted
- Page 20 and 21: ObjectivesThe specific objectives o
- Page 22 and 23: have been rejected by their immedia
- Page 24 and 25: 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 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 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
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NO. OF LIVING PARENTSNobody 7 1 1 2
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tested in drug rehabilitation cente
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GroupsDUHetero-SexuallyInfectedMenT
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y the Ministry of Health (74.2%) or
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Child CareYes, often 0 0 0 1 0 1 0
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GroupsDUHetero-SexuallyInfectedMenT
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Figure 5: Percentage of Respondents
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GroupsTable 12aEmotional Problems E
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Stigmatization and how it has affec
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GroupsTable 15How They Cope With Th
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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