It should be pointed out that the sex workers in <strong>this</strong> study work on the street and conductbusiness primarily in rented rooms. Some of them say condoms are available in theserooms. It is a matter of grave concern that HIV-positive sex workers are continuing towork and, despite all the past years of IEC on prevention, their clients do not want to usecondoms. As one accurately summed up, “Men give…we receive. Whatever… Man….isstill the source”.In terms of quality of healthcare, there were distinct differences ascribed to the careprovided by doctors, particularly specialists in public tertiary hospitals, and that providedby nurses. With few exceptions, PLHIV participants commended their doctors ascompetent, understanding and non-discriminating professionals. There were a fewexceptions. One man told of an incident when a doctor in a private hospital informed hisemployer about his HIV diagnosis without his consent, which led to his forcedresignation. There was another who was insensitive in requesting for a “bio-hazard”assessment before attending to him. There was also another complaint from a womaninfected partner about a doctor who estimated the time she had left to live at three monthssoon after her diagnosis, leaving her feeling hopeless and worried about her children.In contrast to the general praise for doctors, there were many complaints about nursingstaff, such as, nurses who just left bed-ridden and severely ill patients to themselves,unable to eat, clean or take medications, there were those who did not want to touchthem, who told their family members or others about their HIV without their consent, andthose who were not competent in nursing. Quoting one participant, “they have noconfidence in what they have learned [about HIV].” Nurses are in the front-line ashealthcare providers and have the most interactions with patients. Hence, the quality oftheir care is significant.Counselling is a service that slightly over half of the PLHIV (based on the surveyfindings) in <strong>this</strong> study received. Most of <strong>this</strong> comprised post-test counselling, and only aquarter received pre-test counselling. Furthermore, it emerged that more women thanmen received pre-test or both pre- and post-test. This is because some of the DU menhad been tested and diagnosed in prison or a drug rehabilitation centre, and none of theheterosexual, MSM or refugee men had received pre-test counselling.The study also found that HIV testing is done as a routine procedure in prison and drugrehabilitation centres with no pre-test nor post-test counselling. The study participantswho had been in prison, either for drugs or sex work, said that they were informed oftheir positive results “just like that” and given a referral letter upon release for thepurpose of medical follow-up. Whether or not the released HIV-infected prisoners go forfollow-up is left up to the individual. It is not surprising that most of those who go backto using drugs upon release from prison tend not to bother with follow-up medical care.In the same way, drug dependent sex workers just go back to the streets intent upongetting clients to get money for their next drug fix.NGOs provide much needed services in the form of drop-in centres and outreach. Therewere several voices, especially from men among DU and MSM participants, stating howmuch they benefited from HIV-positive persons who have gone through similarexperiences. Clearly, the infected women partners benefit too.128
In <strong>this</strong> study, it took more effort to convene the FGD group of women infected by theirhusbands. Women who were no longer doing sex work were also difficult to recruit, aswere MSM and heterosexual men. However, overall, women participants were generallyfar less vocal compared to the men’s groups, less aware of their rights, less educated, andvisibly, still emotionally scarred. In particular, the FGDs with women partners weretearful discussions, particularly for those whose husband has died.PSYCHOSOCIAL IMPACTThe impact of HIV/<strong>AIDS</strong> on social and psychological well being was explored fromvarious perspectives, including, disclosure, stigma, prejudice and discrimination, changein social relationships and interactions, religious/spirituality involvement, coping skillsand outlook in life.As far as the issue of disclosure of their HIV status is concerned, generally, participantsare very selective as to whom they disclose their status. PLHIV choose not to disclosetheir status for fear of repercussions, such as ostracism by family members and others,and fear of being discriminated. This well-kept secret renders them more stressed. Bothpositive and negative experiences from disclosure were experienced by the participants.There were a few who informed a family member immediately, and without hesitation,with the assurance of his/her support. Many others were more hesitant in decidingwhether and how to disclose their status. The difficulties in disclosing their status couldperhaps be minimized if people living with HIV can be taught how to disclose the matterto their loved ones. In fact, several recounted how useful it was to have counselling andfor counsellors or doctors inform and explain to their family in terms of gainingunderstanding and acceptance.Stigma and discrimination, real or perceived, deterred PLHIV from seeking treatment,and encouraged some to limit social interactions and live in secrecy. The stigmatizationand discrimination faced by the PLHIV is due to society’s lack of understanding of andthe negative perception towards PLHIV. Without a doubt, <strong>this</strong> further aggravates theburden of HIV not only for those infected but also their families.Relationships with significant others or friends are also affected. Many keep tothemselves or to the HIV-positive community. One or two refugees declined their wifeand family’s pleas for them to come home after telling them of their HIV status. Whilea minority have been disowned by their parents or other immediate family (mainly SWsand DUs), and a few isolate themselves from family members, it was clear that familymembers are also the source of physical, financial and moral support for some PLHIV,especially for infected partners. Love, care and acceptance come particularly frommothers – “They didn’t isolate me. Our relationship is still the same…healthy peoplewith sick people. My mum is my pillar of strength”.A vast difference was shown in terms of psycho-social and emotional state at the time ofdiagnosis and currently, at the time of the FGDs. Following diagnosis, participants wereoverwhelmed with a variety of emotions; worries, anxieties, fears, feelings of betrayal,hatred, anger, frustration and even suicide, and they find themselves suddenly at a loss.The participants experienced low self-esteem, self-worth and low self-image. Thisimpact is acutely felt during the initial period following diagnoses of HIV and it may takea while to be emotionally strong depending on the support received. Over time, most of129
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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
- 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: esponsible for their families. As m
- 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