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urban and a rural community. In all cases, the assistance of relevant NGOs was solicitedin recruiting participants. A summary profile of the FGDs by focal group aresummarised in the Table below. More detailed background characteristics are describedin the section on the needs assessment survey:Summary profile of FGDs (June-September 2006)Focal group Locations* (n) NDU menInfected womenpartnersSex workers:TransgenderSex workers:WomenKL (8)K Baru (10)B Arang (10)KL (3)K Baru (5)Kuching (8)K Kinabalu (6)KL (1)KL (7)Kuching (5)KL (8)AgeRange(yrs)28 25-5122 23-46829-5313 23-54Ethnicity17 Malay6 Chinese4 Indian1 Eurasian7 Malay3 Chinese3 Indian5 ethnic Sarawakian(3 Bidayuh; 1 Iban)4 ethnic Sabahan(2 Kadazan; 2 Dusun; 1Rungus)6 Malays2 IndiansMSM KL (8) 8 24-48 8 ChineseHeterosexual men KL (8) 8 8 Chinese1 Malay6 Indian5 ethnic Sarawakian (4Bidayuh; 1 Iban)1 Orang AsliRefugees KL (7) 7 24-40 7 Myanmar ChinTotal PLHIV 94 24-5432 Malay25 Chinese14 Indian1 Eurasian1 Orang Asli9 ethnic Sarawakian5 ethnic Sabahan7 Myanmar ChinCommunity- Women- MenPenang (10)Johor Baru (8)Penang ((10)Johor Baru (8)TOTAL 13036 14 Malay women2 Chinese women2 Indian women15 Malay men2 Chinese men1 Indian men* B Arang – Batu Arang, Selangor; KL – Kuala Lumpur; K Baru – Kota Baru, Kelantan; K Kinabalu – Kota Kinabalu,Sabah** na – not applicable30
Findings from the FGDs: “How HIV affects our lives”Health impactPhysical healthThe FGD participants varied in the length of time since their diagnosis from less than ayear to more than 10 years. Hence, some have not sensed any difference in their physicalhealth since diagnosis. In addition, except for one FGD among DU men, all thediscussions were convened in a convenient and appropriate venue at which participantsgathered. Thus, participation was relatively confined to those who were mobile and hadthe means to get to the venue. Contact persons from NGOs and hospitals who assisted inrecruitment were very helpful in assisting participants with transport arrangements.In fact, several of the participants, men particularly, could cite their CD4 count andprovide <strong>this</strong> as the basis for their relatively good or unchanged health status thus far.However, for one person there is an expectation that his health could decline in thefuture. Others ascribed HIV drug therapy for considerable improvements in their health.Some participants were tested following their spouse’s or partner’s diagnosis upon adviceby doctors, or were tested in prison or a rehabilitation centre, while others were tested bytheir doctors based on symptoms, during antenatal care or medical check-up. Only oneDU man and one infected wife volunteered to be tested because of their perceivedexposure through drug use and husband’s drug use, respectively. Those tested because oftheir symptoms more often that not had severe illness involving weeks in hospital. Theysuffered severe weight loss, extreme weakness, high recurring fevers, profuse nightsweats, loss of consciousness, severe headaches, white (fungal) growth on the tongue andskin rash. Prior to her husband’s diagnosis and death shortly after, one woman (InfectedPartner) spoke of the crippling headache he suffered for several weeks. Despite severalclinic and hospital visits, doctors were not able to provide any treatment or even adiagnosis.In summary, many of the participants reported a range of health complaints currently orat some time after their diagnosis, namely:• Fatigue• Weight loss or loss of appetite• Feeling hot• Sleeplessness• Need/desire to sleep more• Frequent headaches• Poor recall (memory)• Reduced ability to concentrate/focus on a task• Depression• Tuberculosis (TB)• Diabetes• Stroke• Ovarian cancerIndeed, sleeping and eating problems were also the most commonly cited in the NeedsAssessment questionnaire filled out by each participant. For many currently on HIV31
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 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 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
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
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