“Buat pada permulaannya, saya memang tak dapat acceptlah….saya….HIV positif kan. Denial pada diri saya tu masih tinggi lagilah. Lepas saya….aaah….berjumpa dengan [a name], iaitu, pengurusprojek motivasi, saya telah dapat kaunseling daripada dia tentang HIV,kan, dan saya dapat acceptlah sebab saya…..saya….yang buatkan dirisaya berisiko untuk dapat kan. Maknanya, saya…..saya menagih dadah,saya menggunakan jarum suntikan. Outcome daripada jarum suntikan tu -saya kena acceptlah apa yang berlaku pada diri saya tu kan. So, hari inisaya dapat menerima diri saya seadanya bahawa saya HIV positif.”(“In the beginning, I really could not accept….[that] I am HIV positive,right? For me, denial was still high. After I…..met with [a name], that is,motivational project manager, I received counselling from him about HIV,right, and I could accept because I…I…am the one who put myself at riskto get it, right? Meaning, I….I was drug dependent, I used injectingneedles. The outcome from those injecting needles - I just have to acceptwhat happened to me, right. So, today I can accept myself as being HIVpositive.”)(Male, 32yrs, Upper secondary education, DU)Psycho-social impactSocial impactSeveral questions were posed as to how being HIV positive has affected participant’srelationships with people close to them. Issues such as disclosure, stigma, prejudices anddiscriminations, social relationships and interactions with family members, friends,colleagues and community, as well as religious participation and/or spirituality wereexplored.DisclosureExperiences of disclosure, and to whom, were also explored. Some choose to discloseand only to certain people, such as their loved ones or significant others, such as spouses,parents, brothers and sisters. Others choose not to disclose their status for fear ofrepercussions, such as ostracism by family members, stigma and the fear of beingdiscriminated, and <strong>this</strong> well kept secret render them more stress. Some participants keptthe secret for a while before deciding to disclose their status. The FDGs revealed bothgood and bad experiences of disclosure.“How should I say…When I was diagnosed…I told my girlfriend, thenmy father, relatives and friends. All ran away from me. Nowadays, I amonly with my father”(Male, 36yrs, Primary education, Heterosexual)“When I was diagnosed, my parents couldn’t accept it and asked me tomove out from the house. I though by letting my parents know…lettingmy family know that I would have..arr..family support but I was wrongbecause at that time, there was no information about HIV and <strong>AIDS</strong>”50
(Male, 50yrs, Upper secondary education)“Pada pendapat saya, kalau kita nak berkawan lebih baik..ah…kitamerahsiakan identiti kita, kita ada HIV. Sebab kita tak kenal. Kita takkenal you. Lebih lebih dalam. Sebab apa saya nak terangkan you, ituakan jadi satu tanggapan..ah….individu yang ada HIV. Jadi pada saya,tak semua orang kita boleh..ah..memberitahu”(“In my opinion, if we want to make friend it is better...ah...we keep ouridentity a secret, we have HIV. Because we don’t know (you). We don’tknow you. Know you well. Because what i’m going to tell you, it will bean impression...individual with HIV. So to me, not everyone we can...ah...tell”)(Male, 44yrs, Upper secondary education, DU)“Susah juga. Saya sebenarnya di diagnosed pada bulan Ogos tahun lepas2005. Jadi, masa tu saya keep secret sampai bulan dua 2006. Sayapengsan kat rumah. Sakit…hantar hospital, baru saya punya isteri tahu.Bila tahu, saudara saya semua tahu. Jadi, benda ini memang secret padasaya. Yang tahu cuma my immediate family dengan keluarga mertua. Mymother pun tak tahu lagi I positif. Sampai sekarang, I keep it confidential.Tetapi dia orang pun masih belum tahu lagi. Saya keep it confidentialjugak. Stigma dia memang lah. Kita rasa memang tekanan lah sebab kitanak kena behave properly, kan? Jangan bagi nampak kita HIV positif”(“It’s difficult. Actually i’m diagnosed in the month of August last year,2005. During that time I keep secret until the second month of year 2006. Ifainted at home. Sick...was sent to hospital, then my wife knows. When(my wife) knows, all my relatives know. So, <strong>this</strong> thing (HIV status) is asecret for me. [People] that know, are my immediate family and my inlaws family. My mother also doesn’t know that i’m positive. Until now Ikeep it confidential. But they don’t know yet. I keep it confidential also.No doubt there is stigma. We really felt the pressure because we have tobehave properly, right? Don’t let other people see (that) we are HIVpositive”)(Male, 39yrs, Unversity education, DU)“It’s no point for me to tell them. Its like a story. Everyone will keeppassing it around and said how serious it is. We have no choices, but Iwill tell only when I need my partner’s understanding or else I will choosenot to tell. My family, the same situation. My father and mother will feelsad and worry if they know about my status. They are in their old agenow, so, I don’t feel like make them worry. Sometimes, they couldn’thelp me also. They are both quite conservative and believe in religion.May be they will feel cheated when looking treatment for me. So, what Iwant to do now is be more filial, accompanying them, get them out,although I don’t know how long am I suppose to live but at least I savedthem some memory”(Male, 31yrs, Upper secondary education, MSM)51
- 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 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
- 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
- Page 108 and 109:
GroupsDUHetero-SexuallyInfectedMenT
- Page 110 and 111:
y the Ministry of Health (74.2%) or
- Page 113 and 114:
Child CareYes, often 0 0 0 1 0 1 0
- Page 115 and 116:
GroupsDUHetero-SexuallyInfectedMenT
- Page 117 and 118:
Figure 5: Percentage of Respondents
- Page 119 and 120:
GroupsTable 12aEmotional Problems E
- Page 121 and 122:
Stigmatization and how it has affec
- Page 123 and 124:
GroupsTable 15How They Cope With Th
- Page 125 and 126:
Table 18Percentage Of Respondents W
- Page 127 and 128:
esponsible for their families. As m
- Page 129 and 130:
In this study, it took more effort
- Page 131 and 132:
eing transgender and sex worker whe
- Page 133 and 134:
denies them social and economic opp
- Page 135 and 136:
working towards their future, who c
- Page 137 and 138:
ReferencesAidsmeds.com (2006). Curr
- Page 139 and 140:
Sen G, George A, Ostlin P (2002). E
- Page 141 and 142:
Annex II: FGD Guide for PLHIV Group
- Page 143 and 144:
♦ Spouse: marital/sexual relation
- Page 145 and 146:
I. Attitudes and Perceptions relate
- Page 147 and 148:
I. HIV/AIDS Knowledge‣ What did y
- Page 149 and 150:
Annex V: Rapid Needs Assessment Que
- Page 151 and 152:
Types of support or responsibilityM
- Page 153 and 154:
Please tick (√)one onlyIf yes,ple
- Page 155 and 156:
more help would be useful for you i
- Page 157 and 158:
Annex VI: Ethics Approval Letter157