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have been rejected by their immediate families, in which case, a primary non-familymember care-giver will be eligible as respondent in the Family group.The issue of children infected or affected by HIV/AIDS is recognised. In this study,aspects relevant to children were explored in the FGDs from the perspectives of theHIV+ parent (all PLHIV groups) and care-giver (Family group). This issue will also beraised for the community respondents. Infected or affected children were not recruited asrespondents in this study because of methodological and ethical reasons, e.g., need forparental/guardian’s consent, varying chronological and developmental ages, andproblems of disclosure.The various dimensions of impact for PLHIV and their families explored in this study aresummarised below:Table C: Dimensions of impact for PLHIV and their affected familiesSocial • Stigmatization and discrimination• Changes in family structure and relations – e.g.,divorce/separation/death; children fostered or sent toother care-providers• Marital relations and/or marriage/remarriage• Friendship networks• Fear of contagion• Fear of disclosure• Spirituality/religiosity• Behaviour modifications• Resources accessed• Awareness of HIV-related policies and lawsHealth – physical andmental• Type and frequency of illnesses• Side-effects of HIV therapy• Anxieties over HIV drug treatment and associated costs• Guilt, depression, isolation, anger, retribution, rejectionby loved ones• Concerns about opportunities for marriage and familylife (if unmarried people)• Stress about infecting spouse and children (if married),and concern for their welfare• Psychological stress from having a chronic and fatalailment (anxiety, insecurity, emotional trauma)• Loss of self-esteem and self-confidenceEconomic • Education (change in status and future opportunities)• Employment (change in status and future opportunities)• Income-generating potential• Career track/mobility• Cost of medical care (drugs, hospitalisation)• Financial aid/support (monetary or others)• Housing/shelterThe impact of HIV for the community differs from those directly involved or affected byit. As such, the content of enquiry for this group was focussed on their knowledge onand attitudes towards PLHIV, related HIV policies and programmes, expressions ofstigmatization and discrimination, and issues related to prevention strategies. The FGDGuides used in this study are appended in Annexes III to V.22
Defining needsThe needs of PLHIV may be organised at three levels towards the purpose of designing ortargeting programmes (WHO 2003): Individual level, e.g.,‣ individual’s social, economic, physical and psychological profile‣ Knowledge, attitudes and behaviours‣ Access to treatment (and other resources) Community level, e.g.,‣ characteristics of environment‣ community resources‣ social and family networks‣ traditional beliefs and cultural practices Structural or macro level, e.g.,‣ Socio-economic and political conditions‣ Laws and their enforcement‣ Religions and their influences‣ Health systemsAt the individual level, there are various concepts of need, e.g., physiological, emotional,economic, security/safety, certainty/assurance, sense of belonging, contentment, selfactualisation,etc., that contribute to a state of well-being. A recent extensive survey ofthe needs of people living with HIV in the UK defined 18 areas of personal need(Weatherburn et al 2002) as shown in the Table below:Table D: Areas of need1. Sex2. Anxiety/depression3. Sleep4. Self-confidence5. Money6. Job opportunities7. Chores and self-care8. Housing and living conditions9. Eating and drinking10. Friendships11. Discrimination12. Mobility13. Dealing with healthprofessionals14. Drugs and alcohol15. Relationships16. Taking treatments regularly17. HIV treatment knowledge18. Looking after childrenA “need” can be defined as the gap between a person’s current and desired states(Weatherburn et al 2003). However, Weatherburn et al (2003) caution that themeasurement of this gap is not always clear-cut. A person’s needs may increase ordecline when (1) his/her current state changes vis a vis the same desired state, or (2) thecurrent state is unchanged but the desired state changes. Thus, a person may feel (and23
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 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 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
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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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“…bawak saya pergi hospital. An
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erpindah ke tempat lain makin lama.
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pada HIV itu, dia nampak penagih. S
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(Male, 49yrs, University education,
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However this association with the n
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“…..depends on who is the perso
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(“I …my experience society will
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(“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
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