the participants more or less accept their condition and some have now learnt to cope andlive with it. However, some of the participants still have a problem coping with theirillness, and <strong>this</strong> lack of coping strategies and the lack of a support system undermine theirmental health or psychological well-being. Some resort to religion for solace, laughter,keeping themselves occupied with daily activities, and keeping themselves healthy.Without a doubt, social networks, especially with other PLHIV and with NGOs, offersolace, empathy and companionship.Mixed responses with regards to their spirituality or religious practices and beliefsfollowing their diagnoses were also found. Some participants turn to religion orspirituality to cope – “Pray constantly to God now. Worried about my future, let’s seehow. Just lots of prayer”, while a few others shun away from religious affiliationsperhaps due to shame or anger from the view that HIV is a punishment from God – “Irealise that we have to fight for what we need and what we want because God couldn’thelp you”. For a few, faith-based institutions also provide financial support, namely,paying for medications, and basic foods, such as rice, flour, sugar.PLHIV experience tremendous impact on their psychological well-being. Thispsychological impact is attributed by the negative consequences of disclosure, the need tomaintain secrecy, from the stigma and discrimination experienced or their perceived fearof stigma and discrimination, worries about their health, impending death and from theirown personal long term concerns and anxieties.There are also mixed feelings among participants as to how they see their life and whatthe future holds for them. Some have a positive outlook on life, whereas some are morenegative and pessimistic. Some of the concerns for the future are fear for the future oftheir children, especially for infected partners, fear of the unknown and fear of death.ECONOMIC IMPACTFrom the survey on needs assessment, less than a third of the study participants arecurrently employed in full or part-time work or self-employed. In the FGDs, participantsrevealed that HIV has a direct impact on a person’s work, income, career options or jobmobility. Many respondents who were sick could not continue to work. A majoritystopped working due to being incapacitated by HIV-related illness, forced to resign dueto open or tacit discrimination once diagnosis is revealed, or simply asked to leave theirjob. One woman stopped working because of an embarrassing side effect of HIVmedication which darkened her skin. Some, like the refugees, are forced to continueworking despite feeling sick. To many, the loss of work and income aggravates theirworry and anxiety, especially, with the increased financial burden of HIV treatment andsupplements.The economic impact on persons with HIV varies by sexual identity, class, gender andage. For example, transgender and sex workers in the study are found to be moreadversely affected than other groups. Once they fell ill and became very sick, they couldnot carry on with sex work. Some have returned to their families in the rural areas afterdiagnosis. A few stopped because they felt it was wrong to infect others. Indeed, someof the transgender sex workers in the study said they were almost destitute and on thebrink of being homeless, very sick and abandoned to die on the streets until they were,literally, rescued by WAKE (NGO). Often, <strong>this</strong> group faces double discrimination from130
eing transgender and sex worker when applying for welfare or monetary aid from localauthorities and agencies, including Baitumal, the welfare arm of the state religiousagency.Women infected by their husband are also badly affected economically, especially if andwhen the husband has died of <strong>AIDS</strong> leaving her HIV-infected and having to fend forherself and the children as a single parent. Most of the wives were housewives and theirhusband the sole breadwinner. Their situation deteriorates when they themselves becomesick and cannot continue to work or care for their children. A few could still resort totheir Employment Provident Fund (EPF) while some others had to rely on welfare,charity or shelters run by NGOs. A few infected women were fortunate that their ownsiblings or family members were helping them financially, but <strong>this</strong> was not common inthe study.Generally, older HIV infected persons would be even more disadvantaged economicallyas they would face even more difficulties getting a job. One older HIV positiverespondent in the study was very traumatised and desperate for financial aid as he hadused up all his retirement funds that he had withdrawn from the EPF since beingdiagnosed. He even had to sell off all property that he had painstakingly acquired throughhis working years - his car, house, and even furniture - leaving him threadbare with jus<strong>this</strong> clothes and a sleeping mattress.The economic repercussion is particularly daunting for sex workers. Several said theywould not reveal their HIV positive status because they knew clients would refuse theirservices. This is particularly the case for drug-using sex workers who are desperate forwork to pay for their drugs. However, some of them in <strong>this</strong> study claimed they werehonest and reveal their HIV status to clients. A few sex workers felt trapped and torn,yet, they needed to work to survive, and <strong>this</strong> predicament could push some to be suicidal.Some sex workers said they would continue working out of desperation but said theywould take necessary precautions, i.e., ask their clients to use the condom. Regrettably,however, with clients who prefer not to use condoms – a majority, in fact - sex workersare not in a position to demand it.Drug users said they were already financially strained due to drug addiction. Beingdiagnosed with HIV and requiring money for medication further compound theirfinancial problem. However, when not under the influence of drugs, a few of themcontinue to find whatever odd jobs they could to survive. One even admitted that in thepast he had to resort to committing crime to feed his drug habit which came to RM1500per month for heroin.At the other end of the spectrum are the MSM participants. They are generally of highereducational level and work as professionals with higher income status. In other words,the economic impact is less severe for those of higher social class compared to their lesseducated and lower income counterparts.With regards to the impact on personal expenses, the majority of PLHIV in <strong>this</strong> studywould say the bulk of their income is spent on buying medication and supplements(Vitamin C, fish oil, spirulina) to maintain their health. The constant monitoring of theresponse to treatment in terms of trips to the hospital to check on their CD count alsotakes a toll on their expenses. This sum varies from RM350 to RM2000 monthly. Even131
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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
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The main findings from the qualitat
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school or work, transport costs for
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is that the large majority of women
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In fact, special surveys conducted
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ObjectivesThe specific objectives o
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have been rejected by their immedia
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eport) that his/her healthcare (or
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CommunityKnowledge/awareness of HIV
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Framework of analysisA descriptive
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urban and a rural community. In all
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medication, the physical health com
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husbands working in other places wh
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(“And then, this doctor, he/she v
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their food. Nurses and their attend
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“Because we take drugs….no time
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The same claim to 100% condom use w
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in asking them to use condoms, even
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“Normally…..normally, memang ma
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(“But I continued using at that t
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“Buat pada permulaannya, saya mem
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However, not all experiences with d
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yang amat sangat. Tak pernah I rasa
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long term fears and anxieties. The
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“The first time I heard from the
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handset, I too, have handset. Some
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have been turning to God since and
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felt I’m indecent. But, at one ti
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would certainly want to continue wo
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(Transgender, 53 yrs, Upper seconda
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“Sometimes I didn’t get enough
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positively portray people living wi
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“After my diagnosis...I’ll pay
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not know or might not want to be bo
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(UNAIDS 2005).(UNAIDS 2000):The fac
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- 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
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- 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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- 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: In this study, it took more effort
- 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