(“But I continued using at that time….got….got….got support fromthere….but they were…..worried because I was still using….and finallythey sent me into rehab at PENGASIH. And….at PENGASIH…there Istarted….to learn…..I got my life back…from the emotional support Igot….with the support group”)(Male, 32yrs, Upper secondary education, DU)A few specifically drew attention to the benefits of having service providers who werealso HIV-positive:“…..as a HIV volunteer, they will help you according to your situation andyour needs – living….aaah…..medication…aaah….. or look at the thingsthat you really need. If they are capable and do connect to <strong>this</strong> kind ofpeople….they will help us as [much as] they could.”(Male, 42yrs, Primary education, Heterosexual)“Because when you first find out…..when you [are] first diagnosed withHIV and <strong>AIDS</strong>, of course, there is gonna to be denial. There’s gonna bedenial….there’s gonna be isolation…..there’s gonna be blame. There’sgonna be all these things, you know. And how is <strong>this</strong> person gonnaovercome all these - everything at once?! So….the….the first thing aperson [who] is diagnosed with HIV and <strong>AIDS</strong> should…..should come toterms with is….to live with HIV <strong>AIDS</strong>. It is not that…..it’s about living –what you gonna do, there is medication and then all <strong>this</strong> kind ofinformation and the best will come from a peer who already has a supportgroup [like the one] I’m in.”(Male, 50yrs, Upper secondary education, DU)It was clear that an important source of support for their healthcare is friendship, more soin the absence of family relations. In the same way as support groups, friends provideunderstanding and accepting relationships. The importance of friends applies inparticular to marginalised groups, such as, SWs, DUs and TG communities who mayhave been abandoned by or have lost contact with their families for one or other reason.Most likely, family estrangement stem from behaviours deemed unacceptable by familymembers, often preceding HIV infection. At the same time, it may also be the case that adrug user, or sex worker or transgender him/herself decides to distance themselves or cutoff family ties on the perception that he/she is not accepted. In responding to themoderator’s query on how she managed to recover after a year of illness and hospitaltreatment, one participant ascribed her survival to the support of her friends:“Sebab…..sebab saya ada kawan kawan datang melawat. Kalau tak adakawan kawan, doctor, saya dah macam tak ada keyakinan.”(“Because…..because I had friends visiting me. If I did not have friends,doctor, I would have lost faith.”)(Transgender, 32yrs, Lower secondary education, Infected Partner)48
At the same time, personality characteristics or psychological features may also play apart in how the physical body copes with the disease. Speaking of a friend (anotherparticipant) who was so sick in the past, and who recovered:“No hope already because dia dah tinggal tulang dengan kulit je. Dia inisebagai orang kata - dia punya will power. Everybody say that.”(“No hope already because she was nothing but skin and bones. She’s like,what they say – has will power. Everybody says that.”)(Transgender, 53 yrs, Upper secondary education, SW)“When we really talk about HIV <strong>AIDS</strong>......to me…..I’m not thatstressed….. I’ve seen friends…. I’ve seen lots of friends of mine comingfrom stress to depression and, after a couple of days, they die. So, Irecognise stress and depression as one of the things that will kill me. Anda lot of NGOs….err.....like home care. I don’t know what they do about<strong>this</strong>….. Basically, I mean, I’ve been living with HIV now for 14 years. I’mnot on meds. My CD4 is 470 which I’m very happy about. My viral loadis 1300, so I look at my life and I know I got to take care of myself becauseI’m not on meds. One day maybe I will but for now, I make sure I haveproper meals and proper rest.”(Male, 50yrs, Upper secondary education, DU)On the contrary, although affordable healthcare is available through public hospitals,apathy, fatalism or other negative attitudes may exacerbate health through irregular orinsufficient healthcare monitoring or failing to take drug treatments properly or not at all.In particular, active DUs tend not to have regular visits or maintain their medicationbecause of the nature of substance dependence. In fact, a few of the participantsmentioned what little difference HIV made to their own life, not to mention others thatthey might infect, as the only thing they care about is their continuing drug supply. Theywill go to a clinic or hospital only when they are sick. This apathy extends to seekingHIV-related services, including counselling following diagnosis. This negative attitude isillustrated in the following comments:“And then, she asked me to go down to P2 [floor level in hospital wherecounselling service is located]. Go there and find out, they will tell youhow to take care….counselling. What’s your CD4 and all….I just couldn’ttake it! I didn’t go there!”(Male, 38yrs, Lower secondary education, DU)“Same thing with me - I couldn’t be bothered!”(Male, 36yrs, Upper secondary education, DU)“Most of us can’t be bothered.”(Male, 44yrs, Upper secondary education, DU)However, it is evident that access to the appropriate resource enables DUs, and other HIVcommunities, to cope with various issues, such as overcoming denial, gaining acceptanceby their families, and learning to accept it themselves and live with HIV:49
- 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 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
- 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
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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