long term fears and anxieties. The initial period of adjustment following diagnoses isextremely difficult and challenging. Some go through a denial stage and some mourningand grieving. Some faced a sense of shame and guilt in them. All these emotionalturmoil subsequently affect the mental health and the coping skills and strategies of theparticipants.“Orang saya ini dihantui oleh HIV. Kadang-kala, saya biasanya sayaakan cakap pada diri saya, saya tak ada HIV. Bila orangcakap..eh...engkau datang ini apa problem sakit ke...ada HIV? Simplesaya nafikan sebab apa benda itu menghantui, jadi kita tidak perlu jaditertekan pada diri kita sendiri. Kita tidak boleh asyik memikirkan tentangyang saya ini ada HIV. Memikirkan sangat tentang tu akan jadi gilamacam ini. Saya tak mau macam itu”(”People like me is haunted by HIV. Sometimes I, usually I’ll tell myselfthat I don’t have HIV. When people come to me and ask…eh…you comehere because of illness problem…have HIV? Simple, I denied becausewhatever that is haunting us, we don’t have to pressure ourselves. Wecannot constantly think myself have HIV. If we think too much about that,we’ll go crazy. I don’t want to be like that”)(Male, 32yrs, Lower secondary education, DU)”Saya cuba mahu kerja. Macam tidak tenang saya punya fikiran kalausaya kerja. Habis saya kadang-kadang ambil ubat, kadang-kadang checkdarah. Itulah saya jadi bingung. Bagus lagi saya diam-diam di rumah”(”I tried to work. I felt restless, my thoughts, if i don’t work. I’m done ifoccasionally I take medicine or check blood. That’s why I’m stunned. It’sbetter if I sit quietly at home”)(Female, 29yrs, Upper secondary education, Infected Partner)Some of the participants had a more positive outlook in life and have gathered courage tomove on with their lives.“Walaupun saya tahu yang saya sakit saya tidak mau lemah semangat.Saya mesti meneruskan kerja saya. Still meneruskan hidup saya”(“Although I am aware that I’m sick, I don’t want to give in. I want tocontinue with my work. I want to move on in my life”)(Female, 30yrs, University education, Infected Partner)Emotional status following diagnosisFollowing diagnosis, participants are swamped with all sorts of worries, anxieties, fears,anger, frustration and even suicide. They find themselves suddenly at a loss. Some gaveup hope and see the future as dim. The FGDs found that it was initially very hard for oneto accept the fact that they are HIV positive.56
“Was really uncomfortable at that time and felt hurt when all friends andrelatives ran away from me. What else to do other than just feel sad. Iwas feeling like I have come to the end of my life. I was extremely sadbecause you don’t know why all your friends ran away from you eventhough you honestly told them your situation. Everything changed afterthey knew about my status”(Male, 36yrs, Primary education, Heterosexual)“When I was admitted to the hospital, doctor told me I have HIV andeverything lah. Eventually I disagree with the doctor lah, make a mistake.I felt angry. At that moment, I couldn’t accept I have HIV and everything.I don’t know anything about HIV or <strong>AIDS</strong>…but I know the disease cankill you. Then, I was thinking I am going to die, what the heck, youknow. Physically nothing lah, only mentally and emotionally I wasaffected lah”(Male, 36yrs, Upper secondary education, DU)“When my father sent me to Pelangi, I was thinking of why my father leftme here. Why he doesn’t want me. During the first two days, I’m alonethere with all other race of people like Malays and Indians. Most of themin Pelangi are drug addicts. They treated me badly because I’m not one ofthem”(Male, 42yrs, Primary education, Heterosexual)“You will worry and think of the existing medicine can cure your sicknessor not. That’s the first thing come into my mind. Medicine treatmentaspects. Will there any method to cure my disease? Never think of die.Just fear of the money problem. Fear of no treatment can cure <strong>this</strong>disease. We have to personally learn how to face <strong>this</strong> kind of problem andother problems as well”(Male, 42yrs, Primary education, Heterosexual)“Buat pada permulaannya, saya memang tak dapat acceptlah, saya HIVpositif kan. Denial pada diri saya tu masih tinggi lagi lah”(“At the beginning, I cannot accept, I’m HIV positive. Denial in me is stillhigh”)(Male, 32yrs, Upper secondary education, DU)“I was losing a lot of weight. I just wanted to know what was wrong withme and they did the test. They told me that I was HIV positive. Ok, andat that time when they told me, I was like…devastated. I was devastated.The question was….Why me? It felt like a time bomb just dropping intomy lap and when I asked the doctor how many more years I had to live.The doctor told me and said that you only got seven years. So, that mademe worst. That made me becomes very self-destructive. I mean, in thatseven years, I tried to destroy myself. I have tried four times to commitsuicide and things like that because I was thinking, I mean what’s thepoint of living with the disease that you gonna die very soon”(Male, 50yrs, Upper secondary education)57
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Table of ContentsPROJECT TEAM 5ACKN
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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 54 and 55: yang amat sangat. Tak pernah I rasa
- 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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- Page 104 and 105: 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