“The first time I heard from the doctor that I was HIV positive, I feel sosad. It seemed to me that there is no future. I just want to die, but I cameto senses that one will die one day”(Male, 29yrs, Primary education, Refugee)“They told me myself….HIV positive. Then, I went in to see the doctor,he broke the news. That was the time when I really feel a bombshell. Ifeel so depressed right after I knew about the news. I was very depressed,very suicidal, you know and then I got angry with my son, angry with mydaughter for getting pregnant without a husband”(Female, 54yrs, Lower secondary education, SW)“Ya, saya disahkan HIV positif. Masa tu saya tak tahu macam mana sayabuatkan. Yang cuma tahu saya fikir nak mati dan saya taka da semangatnak hidup lagi. Nak hidup lagi and then saperti mana kawan-kawan yangduduk dengan saya mula menjauhkan diri daripada saya. Tak apa. Diaorang taka da pengetahuan tentang HIV. Yang dia orang tahu HIV bolehmerebak. Itu saja. Kemudian, saya berpindah ke tempat lain. Lagimakin lama, kesihatan badan saya down”(“Yes, I am diagnosed with HIV positive. At that time, I don’t know whatto do. All I know is, I thought of wanting to die and I don’t have the willto live anymore. When I’m resolved to live and then…like my friendswho sit next to me begin to stay away from me. Never mind. They don’thave knowledge on HIV. All they know is HIV can spread. That’s all.Then I moved to other place. As time passes by, my health goes down”)(Transgender, 40yrs, Lower secondary education, SW)Among women who are infected by their spouse or partner, they feel betrayed andcheated. Some of the women found out of their HIV status only when they went for theirpregnancy check up.“Apabila saya tahu yang saya ada penyakit, saya sangat susah. Macamtidak boleh terima apa dia buat. Hari itu, saya sudah tanya dari manalaki saya dapat penyakit ini kan. Dia ada seksual dengan perempuanluar. Start hari itu, kita punya kasih sayang pun tidak macam dulu.Sepatutnya, kita sebagai isteri kita harap laki kita jujur dengan kita. Tapisebaliknya, dengan tiba-tiba saja kita tahu yang laki kita tidak jujur samasaya. Kalau tidak melibatkan isteri tak apa. Ini, isteri pun kena denganperbuatan yang dia buat. Itu yang paling sedih sekali”(”When i found put that i have illness, I’m very sad. Like...cannot acceptwhat he has done to me. The other day, I asked where did my spouse get<strong>this</strong> illness from. He has sexual relationship with other women. From thatday onwards, our love for one another has change, unlike before. By right,as a wife, we hope that our husband is honest with us. On the contrary…,suddenly we found out that our husbands are not honest with us. If it hasgot nothing to do with us, never mind. But <strong>this</strong>…, as wife, got it due to hisdeed. This is the most upsetting”)58
(Female, 46yrs, Upper secondary education, Infected Partner)”At first, I cannot take it, until I want to kill myself. I am pregnant. Ithink about my baby. I think why I so stupid. Then I think how to growmy children up”(Female, 23yrs, Lower secondary education, Infected Partner)“Nurse dekat situ cakap…apahal kamu mengandung. Kamu tak tahu kahsuami kamu HIV, dia cakapkan. Masa tu, suami saya masih army lagikan, dekat Johor sana. Sebab tentera, army dia macam tidak berapa bagitaukan. Ah..masa mengandung saya tahu. Mula-mula saya rasa marahlah”(“The nurse over there said…“Why did you get yourself pregnant. Don’tyou know that your husband has HIV” she said. During that time, myhusband is still in the army, in Johor. Because as soldier, his army (he)doesn’t really want (them) to know. Ah…I found out when I waspregnant. At the beginning, I was angry lah”)(Female, 36yrs, Upper secondary education, Infected Partner)Current psychological and emotional statusThe FGDs revealed that there is a difference in terms of psychological and emotionalstate between the period of diagnosis and their current psychological state. Most of theparticipants have more or less accepted their disease and some have now learnt to copewith it and move on.“After you know you have <strong>this</strong> disease, you know how precious life is.That’s where they start to change. Change emotionally. Usually you getto know, no doubt still like you are in sort of denial. When you, youknow, you don’t take to know about the disease itself. But, it changes in apositive way. You want to go on living, you want to do something. Butthe disease itself, we push aside. You consider yourself normal, able towork, able to look for help. No doubt you got the disease, the changecomes in the sense…ah…now we are struggling to survive to live insteadof not caring about a thing”(Male, 44yrs, Upper secondary education, DU)“Apa orang ada, saya pun ada. Bukan lah orang ada rumah tiga tingkat,saya ada rumah empat tingkat. Tak ada lah. Saya biasa juga. Ada orangada ni handset, saya ada handset. Ada orang ada kereta, saya ada keretasendiri. Dulu saya tak ada. Saya main kat Lorong Haji Taib. Hidupbersepah-sepah. Tidur atas kotak. Daripada situlah saya…kalau sayatak perbaik diri saya, saya ingat saya tak ada lagi lah. Mungkin saya dahtidur lama lah. Rileks for …untuk selama-lama kan. Daripada situ, sayasedar, sedar, sedar, sedar sampai lah ke sini…sampai ke hari ini. Sayapun merasa gembira juga lah”(“What others have, I have also. Not like, others have three storey houses,I have four storey houses. No lah. I’m normal also. Some of them have59
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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
- 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 54 and 55: yang amat sangat. Tak pernah I rasa
- Page 56 and 57: long term fears and anxieties. 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
- 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
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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