However, not all experiences with disclosure are bad. There are also happy stories whenHIV status is disclosed.“I did not immediately come back and tell my parents. It took me oneyear to prepare that…before I actually said anything about my status. Iguess they, they can….they can accept. Cause it took me one yeartogether with my fiancée to prepare them, you know, we kind of educatethem, exposing them to right information. My relationship with them, Ithink much better compared to before. Friends they do not know”(Male, 40yrs, Upper secondary education)“Doktor bagi letter, dia beritahu saya. Doktor tak beritau family. Sayasendiri beritahu mak bapak. My family all know. Sayang. Bila kena sakit,lebih sayang”(“Doctor gave letter, he/she informed me. Doctor didn’t tell family. I toldmy parents by myself. My family all know. Loving/caring. When [I] fallsick, more loving/caring”)(Female, 36yrs, Lower secondary education, SW)Some chose not to disclose their HIV status for fear of shame, neglect or disown by thefamily and also the lack of courage to disclose.“I’m scared. My family don’t know that I have. I’m scared that they willhate me. Nobody knows. My friends also don’t know”(Female, 40yrs, Lower secondary education, SW)“Saya punya mak bapak tak nak bagi tau dia orang. Sampai sekarangadik-beradik tak tau. Kawan saya tak tau. Sebab rasa malu pun ada”(“I don’t want to let my parents know. Until now, my siblings don’t know.My friends don’t know. Because feel ashamed”)(Female, 22yrs, Lower secondary education, SW)“Saya berfikiran keluarga, saya berfikiran saya, dan saya berfikir kawankawansaya. Macam-macam saya fikir, tapi almost saya fikirkan keluargasaya. Saya tak berani nak bagi tahu keluarga saya. Sebab apa, keluargasaya ini dari kampong dan tak tahu apa-apa tentang benda-benda inisemua. May be satu hari nanti saya akan bagi tahu tapi now saya takyakin. Kita tak boleh terus tiba-tiba saya ada penyakit macam ini”(“I thought of my family, myself and my friends. I ponder on all sorts ofthings, but mostly I think of my family. I don’t dare to let my familyknow. Because my family came from rural area and do not know anythingabout <strong>this</strong> things. Maybe one day I will let (them) know but now i’m notconfident. We can’t suddenly (tell) that I have <strong>this</strong> illness”)(Transgender, 40yrs, Lower secondary education, SW)52
The participants seemed to be at a lost in deciding whether and how to disclose theirstatus. The difficulties in disclosing their status could perhaps be minimized if peopleliving with HIV/<strong>AIDS</strong> can be taught how to disclose the matter to their loved ones. Once<strong>this</strong> is disclosed at the appropriate time, they have to bear the consequences of <strong>this</strong>disclosure. Perhaps, following disclosure, their mental health would be better.RelationshipsThe effect of being a person living with HIV/<strong>AIDS</strong> does affect one’s relationships, be itwith family members, relatives or friends. Some do not want to further burden thefamily, and thus has to leave home and be on their own. Some who have been out forsometime crave for family love and relationship.“My father speaks to me like that. Because HIV doesn’t die faster thandrugs. I don’t want to see you smoke. See you smoking drug every,everyday and then you turn yourself into a ghost. At least, HIV there isstill lot of prevention. I still can support lah what kind of good food andwhat kind of good health you want. I support you, I don’t mind but Icannot support you on drug. So, at last, I don’t want to put my family intoso much trouble. I left the town and I stay on my own”(Male, 49yrs, University education, DU)“Dengan keluarga, saya permulaan dulu, memang saya dah tahu sayaada HIV dan saya penagih tapi keluarga saya tak tahu saya ada HIV.Jadi, saya penagih. Tapi, keluarga saya tak tahu saya ada HIV. Jadi,saya melari, melarikan diri daripada dia, selama hamper 10 tahun. Sayatidak berhubung dengan dia, saya tak nak dia. Bermasalah saya denganmasyarakat. Saya punya jiran semua, tak nak dia…ada masalah.Disebabkan oleh saya seorang penagih dan saya pembawa HIV, sayakeluar daripada keluarga saya”(“With my family, I at the very beginning, really, I know that I have HIVand i’m a drug addict. But my family doesn’t know that I have HIV. So iran away, ran away from my family, for almost 10 years. I didn’t contactthem, I don’t want them. I’m having problem with the society. All myneighbours, (I) don’t want them...have problems. Because of me as a drugaddict and a HIV carrier, I come out from my family”)(Male, 32yrs, Lower secondary education, DU)“My family didn’t like that I have HIV. Because I think I fail myself, sad.And also my family members may not accept me, they try to avoid everypart of my life when I was at home. Many scare to use knives and spoons,plates and spoons. So, I just don’t want to bluff them anymore”(Male, 51yrs, Lower secondary education, DU)“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 friends, with familytotally out. Ok, they 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 sekarang ni I rasa hidup I susah,53
- Page 2 and 3: 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 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 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
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- Page 98 and 99: (“In my opinion such campaign sta
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female sex workers (seven out of 13
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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