alastair hudson, rebecca mbewe dr valerie delpech …€¦ · alastair hudson, rebecca mbewe dr...
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ThePeopleLivingwithHIVSCgmaIndex
STIGMASurveyUK – 2015
A.Hudson1,4,R.Mbewe,J.Jefferies2,I.Lut1,4,W.Crenna-Jennings1,4,S.Okala1,L.Benton1,Z.Jamal1,4,C.F.Ferraro1,2,P.Kirwan2,D.Asboe3,C.Kunda4,e4,5,J.Morton4,6,M.Nelson7,I.Reeves8,M.Ross4,9,W.Sseruma4,10,G.ValioCs4,11,A.Wooton4,9,V.Delpech21FamilyPlanningAssociaCon,London,UnitedKingdom,2PublicHealthEngland,London,UnitedKingdom,3BriCshHIVAssociaCon,London,UnitedKingdom,4SCgmaIndexUK-2015AdvisoryGroup,London,UnitedKingdom,5PosiCvelyUK,London,UnitedKingdom,6TerrenceHigginsTrust,London,UnitedKingdom,7Chelsea&WestminsterHospital,London,UnitedKingdom,8HomertonUniversityHospitalNHSFoundaConTrust,London,UnitedKingdom,9ClinicQ,London,UnitedKingdom,10NAZ,London,UnitedKingdom,11HIVScotland,Edinburgh,UnitedKingdom
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#zerodiscriminaCon:UNAIDS
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Methodology2009Survey• 867parCcipants• RecruitedbyUKcommunity&policy
organisaCons• Peer-ledinterviews
2015S-gmaIndexUK(Jan–April2015)• 1,576individuals
• Recruitedbyover100crosssectorcommunityorganisaConsand46NHSclinics
• Self-completedsurveyonline(SNAP)
• Ethicalapproval(NHS)
• PrizedrawtowinaniPadasincenCve
• 24/7hotline-Noadverseevents
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Goodgeographicalcoverage
*ComparisonstoUKpopulaConusingtheNaConalHIVSurveillancedata(SOPHID)2013(N=80,467)
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MeasuresExperiencesofsCgmaindifferentsejngs:• SexualrelaConships• Family&Friends• Workplace• Healthandsocialcareservices• EducaConalsejngs• ReligiousacCviCes• Socialservices• Police,prison&detenCon
services
DifferentexperiencesofsCgma:
• Internalised(fear,worry)• AnCcipated(avoidingsituaCons)• Enacted(treateddifferently)*• Disclosurecontrol&support• Pressuretodisclose
• Age• Gender• Ethnicity• Sexuality
• Sexwork• Useofdrugs• Prisonerstatus• Migrantstatus• Disability
ParCcipantinformaCon:
Surveytools:• Resiliencescore• PHQ2depressionscreeningtool
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Employment
EmploymentstatusAllpar-cipants(1,576)
EmployedfullCme 50%
Employedpart-Cme 14%
Casualwork 4%
Unemployed 17%
Volunteering 12%
Sick/disabled 17%
Lookingalerhome 3%
ReCred 8%
Student 5%
• HalfofparCcipantswereinfull-Cmeemployment
• Mostareworkingintheprivatesector(47%),comparedtopublic(33%)orvoluntary(20%)sectors
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DemographicsTotal:1,576par-cipants
§ MajoritytakingART(93%)§ Mean11yearssincediagnosis(range<1-34years)
trans or non-binary
Male Female
75% 22%
2%
Didn’t say
1%?
Gender Community Sample 45%
Female
141(20%)
Maleidentify as MSM
475(75%)
BAME
229(32%)
NHS Sample 55%
Female
218(25%)
Maleidentify as MSM
503(89%)
BAME
371(43%)
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DefiniConofBAME‘BAME’byethnicityandregionofbirth Freq. %AnyotherWhite-nonUK 113 19MixedWhiteandBlackCaribbean 12 2MixedWhiteandBlackAfrican 15 3MixedWhiteandAsian 18 3BlackCaribbean/BlackBriCshCaribbean 36 6BlackAfricanUK/EUciCzen 12 2Uganda-BlackEasternAfrican 41 7OtherBlackEasternAfrican 60 10BlackWesternAfrica 40 7BlackNorthernorCentralAfrica 21 4Zimbabwe-BlackSouthernAfrican 96 16BlackSouthernAfrica 19 3Anyother/unknownBlackbackground 16 3Asian 37 6Arab 3 1Otherethnicbackgrounds 44 8
Total 583 100
EthnicGroup Freq. %
WhiteBriCsh/Irish 967 61
AnyotherWhite-UKciCzen 22 1
BAME 583 37
Missing 4 <1
Total 1,576 100
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GenderandSexualityinBAME
24%
29%
44%
2% 1%
MaleHeterosexual
MaleMSM
Female
TransMaleorFemaleQueer,non-binaryorother
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Results• FeelingsandexperiencesoflivingwithHIV• TypesofsCgma• Disclosureindifferentsejngs• PerceivedandexperiencedsCgmainthehealth
caresejng
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SCgmaanddiscriminaCon
• VariaConsinhowHIV-relatedsCgmaisdefinedintheliterature• SCgmaisaprocessofdevaluaCon–anajtudeorvaluethatcanbe
expressed,perceivedand/oranCcipatedindifferentways• DiscriminaConisanacCon–someCmesalsoreferredtoasenactedsCgma
• SCgmaanddiscriminaConarerelatedbutdisCnctconcerns• MulC-layeredandcanrelatetomorethanoneaspect(suchasHIVstatus,
sexuality,gender,orraceetc)• MeasurementandeffortstoaddresssCgmaanddiscriminaConneedtobe
different.
• GrowingevidenceoftheimpactofHIVrelatedsCgmaanddiscriminaCononthehealthandwell-beingofpeople
• ExperiencesofsCgmaanddiscriminaConaredifficulttomeasureandbothareunder-reported.
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• HIV-relatedsCgmacanbedividedinto:
– An-cipated/perceiveds-gma– Internalised/selfs-gma– Discrimina-on
• ThesurveyaskedparCcipantsiftheyhadworriedabout,avoidedorexperienceddifferenttreatmentinvarioussejngs,andaboutnega-veandposi-vefeelingsrelatedtotheirHIVinthelast12months
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FEELINGSRELATEDTOHIVPosiCveandnegaCve
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LivingwithHIVin2015
N=1576YES
Incontrolofmyhealth 61%PosiCveaboutlife 64%PosiCveaboutthefuture 62%
Asgoodasanyoneelse 58%
Q.Inthelast12months,haveyouexperiencedanyofthefollowingfeelingsinrela;ontoyourHIVstatus?
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Self-image
N=1576YESFeltashamed 48%Feltguilty 45%Blamedmyself 48%Hadlowselfesteem 48%Blamedothers 23%Feltsuicidal 18%
Q.Inthelast12months,haveyouexperiencedanyofthefollowingfeelingsinrela;ontoyourHIVstatus?
Almostathirdofpar-cipants(28%)diagnosedinthelastyearreportedsuicidalidea-on.
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NegaCveself-image
0%10%20%30%40%50%60%70%80%90%100%
Incontrolofhealth
PosiCveaboutfuture
PosiCveaboutlife Feelasgoodasanyoneelse
No
Yes
Q.Inthelast12months,haveyouexperiencedanyofthefollowingfeelingsinrela;ontoyourHIVstatus?
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NegaCveself-imageanddepression
• 40%hadeverbeendiagnosedasdepressed– 62%ofparCcipantsthathadeverbeendepressedhadanegaCveselfimagescore
• 28%scoredhigh(>2)inthePHQ2depressionscreeningtool– 78%ofthosescreenedfordepressionhadanegaCveselfimagescore
• 18%reportedsuicidalideaCon– 87%ofparCcipantsreporCngsuicidalideaConhadanegaCveselfimagescore
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NegaCveself-imageandseekingcare
GeneralPracCce• 13%ofallparCcipantsreportedavoidingtheirGP• 74%ofparCcipantsavoidingtheirGPhadanegaCveselfimagescore
DentalpracCces• 14%ofallparCcipantsreportedavoidingdentalpracCces
• 66%ofparCcipantsavoidingdentalpracCceshadanegaCveselfimagescore
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Inthelast12monthshavesoughthelpfrom…
Overall Nega-veself-image
LocalHIVsupportorganisa-on 30% 37%PeerGroup 11% 13%NHS 10% 12%Ac-vists 5% 6%Faithsedngs 4% 4%Community 2% 2%Internet 16% 23%None 41% 33%
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DISCLOSUREControl,supportandpressure
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Disclosure
• DisclosureisacomplexandmulCfacetedprocessofmakingavoluntaryorinvoluntarydecisionaboutwhotoinformaboutone’sHIVstatus
• Itisolenagradualprocessofdisclosingtoanincreasingnumberofothersinone’snetworks
• It’smeaninghassignificantlychangedoverthepastdecades–(‘beingundetectable’)
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WhoisawareofyourHIV?Par-cipants(N)
SexualPartner(N=1189) 83%Family(N=1535) 70%Friends(N=1528) 79%Faithcommunity(N=616) 22%Workplace(N=1444) 48%
Overallabouthalfofpar;cipantsfeltempoweredwhensharingtheirstatuswithothers
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IfeltpressuretodisclosemyHIVstatusfrom…..
AsexualPartner(N=986) 11%Afamilymember(N=1063) 16%Closefriends(N=1191) 9%Leadersormembersofyourreligiouscommunity(N=146)
9%
Employer(N=637) 12%
However….In2015,
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ExperiencesofHIVrelatedsCgmaanddiscriminaConin2015
An;cipateds;gma
Internaliseds;gma
Enacteds;gma
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HealthCare(N=1528)
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55%saidtheirDentalPrac-cewasawareoftheirHIVstatus.
HIVDisclosureinPrimaryCare88%saidtheirGPPrac-ce
wereawareoftheirHIVstatus.
88%
TimesincediagnosishadnoimpactonControl&Support
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HadnegaCvecommentsfromahealthcareworkeraboutyourHIVstatusorPLHIV? 13%
FelttherewasexcessaxenContousingbarrierprotecCon(i.e.gloves,masks)? 21%
Beengiventhelastappointmentofthedaynotbychoice? 12%
SCgmaanddiscriminaConinhealthcaresejngsin2015
32%
39%
7%
21% 20%
13% 14%
3% 4% 5%5% 5%2% 3% 5%
GP DentalpracCce STIclinic OutpaCent InpaCent
Worriedaboutbeingtreateddifferently Avoidedseekingcare Feltrefusedordelayedtreatment
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RelaConshipbetweensCgmaandfeelingsofcontrolofdisclosure:GPprac-ce
40.00%
39.00%
22.00%
0% 20% 40% 60% 80% 100%
Worriedorfeareddiscrimina-on
20.18%
18.24%
6.70%
0% 20% 40% 60% 80% 100%
AvoidedGP
8.31%
7.77%
3.28%
0% 20% 40% 60% 80% 100%
Feltrefusedordelayedtreatment
19.88%
16.22%
7.13%
0% 20% 40% 60% 80% 100%
Beentreateddifferently
N=424 N=176
N=174N=78
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RelaConshipbetweensCgmaandfeelingsofcontrolofdisclosure:Dentalprac-ce
47.5
51.5
30.33
0 20 40 60 80 100
FearofDiscrimina-on
20.83
14.37
10.85
0 20 40 60 80 100
AvoidedDen-st
10
7.78
5.88
0 20 40 60 80 100
Feltrefusedordelayedtreatment
26.67
22.75
13.97
0 20 40 60 80 100
Treateddifferently
N=322 N=114
N=153N=60
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Conclusions• TheUKhaswell-establishedanC-discriminaConlawsandpolicies,and
excellenthealthcare• ThemajorityofpeoplelivingwithHIVintheUKfeelposiCveabouttheir
livesandhealth
However,– HalfofpeoplelivingwithHIVhasanegaCveselfimageinrelaContotheirHIV
andalmostoneinfivefeltsuicidal– BexeridenCficaConandsupportforpeoplewithnegaCveselfimageisrequired– AsignificantnumberofpeopleconCnuetofeelorexperiencesCgmainarange
ofsejngsincludinghealthcaresejngs– Thesefeelingscanbereducedwhenpeoplefeelincontrolofthedecisionto
disclosetheirHIVstatus
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Reportcards
• 11reportcardsfocusingonregionsandkeypopulaCons:
ü NaConalü Englandü Scotlandü Walesü NorthernIrelandü London
ü MSMü BAMEü Womenü Transü Peoplewhoinjectdrugs
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Regional&KeypopulaConReportCards
“Iamatranswoman.Peopleares7llafraidofthingstheydonotunderstand”Transwomanofwhitenon-BriCshethnicitylivinginScotland,50,diagnosed2000
Transandnon-binarypar-cipants(N=31)
“BecauseIhavethiskindofintersexualdualityofbeingtransandbeingHIV+,peopleaskmeifI’vebeeninvolvedinsexwork,peoplehavenoconceptofthereality”TranswomanofwhiteBriCshethnicitylivinginLondon,51,diagnosed1992
“[Whenever] under pressure todisclosetoanewGP, IoOenfeeljudgedandashamed”Trans woman of black Africanethnicity livingintheNorthWest,37diagnosed2006
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Worried–AnCcipatedSCgma
Q:Inthelast12months,haveyouworriedabout….?
26%26%
13%10%
9%
23%13%16%
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Avoided–InternalisedsCgma
Q:Inthelast12months,haveyou….?
39%16%16%
3%6%
“It makes me [wary] of trying to form arela7onship” Trans woman of white Britishethnicity living in West Midlands, 58 year ofdiagnosisunknown
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Enacted-DiscriminaConQ:Inthelast12months,haveyouexperienced….?
16%16%
3%6%13%13%
3%3%3%
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DiscriminaCon:transvs.cisparCcipantsTrans Cis
%Yes %RelatedtoHIV
9%18%
9% 5%8% 4%
7% 3%2%4%
3%
13%13%
3%
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SCgmaanddiscriminaConinhealthcaresejngsinthelast12months
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PosiCvefeelings
TransN=31
CisN=1,541
Incontrolofmyhealth 58% 61%
PosiCveaboutlife 45% 64%
PosiCveaboutthefuture 52% 62%
Asgoodasanyoneelse 45% 58%
Q.Inthelast12months,haveyouexperiencedanyofthefollowingfeelingsinrela;ontoyourHIVstatus?
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NegaCvefeelings
TransN=31
CisN=1,541
Feltashamed 52% 48%
Feltguilty 45% 45%
Blamedmyself 39% 48%
Hadlowselfesteem 55% 48%
Blamedothers 29% 22%
Q.Inthelast12months,haveyouexperiencedanyofthefollowingfeelingsinrela;ontoyourHIVstatus?
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DepressionandsuicidalideaCon
• 42%hadeverbeendiagnosedasdepressed
• 29%scoredhigh(>2)inthePHQ2depressionscreeningtool
• 13%reportedsuicidalideaConinrela-ontotheirHIV
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Conclusions• AhigherproporConoftransparCcipantswereworriedaboutdifferent
treatment,avoidedcareandfeltrefusedordelayedtreatmentinhealthcare
And…– TransparCcipantsworriedaboutbeingtreateddifferentlyinvarioussocial
sejngs– ParCcipantsreporCngavoidingcertainsituaConsduetotheirHIVstatus– TransparCcipantsweremorelikelytoreportreceivingcertaintypesof
discriminaCone.g.twiceasmanytranspeoplereportedbeingphysicallyassaultedcomparedtocisgenderparCcipants
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SCgmaSurveyUKQualitaCveStudy
TheStorysofar…DrLisaThorley
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• KnowingthatIwasundetectableandthatIcouldn’tpassitonto
anyoneelse,mademymentalstatebeinareallygoodplace,itmeantthatsexwasnolongeramindfield.Igotempoweredbytellingpeople.(MSM,Asian,36,Brighton,diagnosed2010)
• Tomewiththisrecentpartnerstudy,itmeanstomethatI’mnot
infec;ous.That’showIseeit.Butforsomepeopleyoucans;llseethatfearintheireyes,theydon’tunderstand,evenwhenyoutrytoexplaintothemyou’rejustHIV+,oryou’vegottheAIDSvirus.Soforme,IknowthatItakemymedica;on,soIknowthatI’mnotinfec;ous….itempowersyou,youcanreliveyourlifeagain.(Whiteheterosexualwoman,55,Wales,diagnosed1994)
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• Ithinkthemedicalcommunitydon’tactuallygraspthepsychologicalimplica;onsofwhatitmeanstobeundetectable,theyjustthink,ohthisisinteres;ngresearch.Theydon’tactuallythinkwhatitmeanstothepa;ent.(MSM,white,54,London,diagnosed1997)
• Formeitwassomethingtostrivetowards,becauseIrememberwhenIwastakingmymedica;on,Iwaswai;ng,wai;ng,tobecomeundetectable.Whenyoubecomeundetectable,itslike,greatI’mnownormal.I’mashealthyasthenextperson.L:Icried.J:SodidI,itwaslike,thereislightattheendofthetunnel(MSM,Asian,40,London,diagnosed2005-2006)
(AllquotesarefromthequalitaCvedataofThePeopleLivingwithHIVSCgmaSurvey2015)
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Thankyou
ThankyoutoallourparCcipantswhotookpartinthestudy!