medication, the physical health complaints they suffered reduced considerably afterstarting treatment. It is noteworthy that women infected by their husbands voiced a widerrange of complaints than those in other groups, including, ovarian cancer, stroke,diabetes, thyroid dysfunction, severe headaches and depression.By far, the most common health complaint was fatigue, tiring easily or having muchlower energy levels than before. Sleep disturbances – either needing a lot more sleep or,in contrast, difficulty sleeping - were also relatively common and may be associated withthe problem of fatigue. This physical effect was voiced by several men and women:“The energy is not there. I don’t know how…. I don’t know how to put myenergy forward [raise energy levels] already. But when I was not infectedthat time… in games… the exercise anyhow also, I don’t feel tired.”(Male, 49yrs, University education, DU)“Macam saya dulu, sebelum dapat ini sakit macam… ok je. Macamkuat…tidak cepat lelah, naik bukit pun tidak lenguh, mahu angkat barangpun….. tidak rasa sangat. Tapi sekarang, naik bukit sikit - rumah saya naikbukit - naik sikit pun macam putus saya punya nafas.”(“Previously, before I got <strong>this</strong> illness… I was OK. Like strong…. Noteasily breathless, don’t get sore muscles from walking uphill, lifting anything….don’t feel it much but now, going uphill - my house is up a hill -even a little way, like I get breathless.”)(Female, 46yrs, Upper secondary education, Infected Partner)“I also got the same experience like how ….difficult to ….to tell the doctorwhat is the problem. Something is going wrong….but cannot tell in aword….you know. Feel very weak….very weak. Sometimes sleep somany hours……but sometimes cannot sleep. By the time we go to work,then the performance is not good…..but not the emotion make the troublebut, physically….cannot handle it.”(Male, 31yrs, Upper secondary education, MSM)A few specifically mentioned problems concentrating or focussing their thoughts ordrifting off:“Sebelum tu memang I… kalau I baca satu cerita tu, besoknya 90% I bolehcerita dengan orang… but now 50/50.”(“Previously, it’s true if I read a story, tomorrow I can relate 90% of it topeople ….but now 50/50”)(Transgender, 27yrs, Primary education, Infected Partner)“I’m sitting right in front of the computer and typing. My mind is shut offbut my hand still typing…and by the time I…I…realise what I’m doing,right? On the computer screen is all garbage…..and I’m just typinggarbage.”(Male, University education, MSM)32
However, one male respondent suggested that <strong>this</strong> symptom may be psychosomatic sincemost do not know when they were infected; merely when they were diagnosed. Hepostulated that, if HIV caused such a physical effect, it should have been apparent evenbefore diagnosis. While <strong>this</strong> could be the case, it is also possible that duration since onsetof infection plays a part in the physical impact of HIV.Several of the participants are on HIV medication. As mentioned earlier, they noted howmuch better they felt after starting their drug therapy. Only one (Infected Partner) saidshe did not feel any different, although she understood that she needed to continue takingit. However, some suffered, or continue to suffer, side-effects. For one, a refugee, <strong>this</strong>necessitated up to four changes in the drug regimen, for another, the addition of pills toaid sleep. These side-effects included gastric pain after taking the pills, quick temper,skin redness, loss of appetite and weight loss:“….didn’t have time to prepare…..the moment I went to see the doctor inUH [Universiti Hospital], they said my CD4 was already 149…..have tostart the medication. So….no time to do anything, just start themedication….but over the period of recovering, the CD4 was going up,there would be lots of things happening within body – rashes and highfever….sweating at night….things like that. So, basically, I just handlethings as it comes along ….face each thing when it presents itself. We justmanage it…with fever, then, I will use Panadol, when it is night sweat thenI change my t-shirt or I put a towel around my neck.”(Male, 46yrs, University education, MSM)For one woman (Infected Partner), Stockrane made her dizzy – a feeling of being “high”.Some of these effects are documented in the literature (Aidsmeds.com 2006). Anotherwoman (Infected Partner) suffered an unusual side-effect which, in itself, was traumaticfor her and her family:“Orang lain makan ubat putih… saya makan ubat semakin hari semakingelap… hingga dua bulan, saya tak keluar daripada rumah… tak keluar….Kerja pun saya berhenti. Sekarang saya tak buat apa apap….pasal wajahsaya hitam, bukan sebab lain. Wajah tersangat hitam; cuma gigi sahajayang putih.”(“Others take the medication become paler… I took it and got darker bythe day…. Up to two months, I didn’t go out of the house….didn’t go. Ieven stopped working. Now I don’t do anything…..because my face turnedblack, not for any other reason. Face too black; only my teeth were white.”)(Female, 39yrs. Lower secondary education, Infected Partner)Most of the side-effects, however, were not lasting ones as they became accustomed tothe drugs or changed their regimen.When probed, some of the participants who currently have a regular partner, notablyspouse, reported reduced sexual activity following HIV diagnosis. Reduced frequency ofsexual relations appears to affect women more than men. Many of the infected wives whoare still with their HIV-positive husband either no longer have sexual relations with himor only occasionally. For some, <strong>this</strong> situation preceded HIV diagnosis because of33
- 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 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 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
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erpindah ke tempat lain makin lama.
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pada HIV itu, dia nampak penagih. S
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(Male, 49yrs, University education,
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However this association with the n
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“…..depends on who is the perso
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(“I …my experience society will
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(“Can…can marry, no problem. Bu
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Harm Reduction programmeSome urban
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(“In my opinion such campaign sta
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Table 2aDistribution of Respondents
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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