alastair hudson, rebecca mbewe dr valerie delpech …€¦ · alastair hudson, rebecca mbewe dr...

AlastairHudson,RebeccaMbeweDrValerieDelpech&

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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

#zerodiscriminaCon:UNAIDS

Methodology2009Survey•  867parCcipants•  RecruitedbyUKcommunity&policy

organisaCons•  Peer-ledinterviews

2015S-gmaIndexUK(Jan–April2015)•  1,576individuals

•  Recruitedbyover100crosssectorcommunityorganisaConsand46NHSclinics

•  Self-completedsurveyonline(SNAP)

•  Ethicalapproval(NHS)

•  PrizedrawtowinaniPadasincenCve

•  24/7hotline-Noadverseevents

Goodgeographicalcoverage

*ComparisonstoUKpopulaConusingtheNaConalHIVSurveillancedata(SOPHID)2013(N=80,467)

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

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

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%)

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

GenderandSexualityinBAME

24%

29%

44%

2% 1%

MaleHeterosexual

MaleMSM

Female

TransMaleorFemaleQueer,non-binaryorother

Results•  FeelingsandexperiencesoflivingwithHIV•  TypesofsCgma•  Disclosureindifferentsejngs•  PerceivedandexperiencedsCgmainthehealth

caresejng

SCgmaanddiscriminaCon

•  VariaConsinhowHIV-relatedsCgmaisdefinedintheliterature•  SCgmaisaprocessofdevaluaCon–anajtudeorvaluethatcanbe

expressed,perceivedand/oranCcipatedindifferentways•  DiscriminaConisanacCon–someCmesalsoreferredtoasenactedsCgma

•  SCgmaanddiscriminaConarerelatedbutdisCnctconcerns•  MulC-layeredandcanrelatetomorethanoneaspect(suchasHIVstatus,

sexuality,gender,orraceetc)•  MeasurementandeffortstoaddresssCgmaanddiscriminaConneedtobe

different.

•  GrowingevidenceoftheimpactofHIVrelatedsCgmaanddiscriminaCononthehealthandwell-beingofpeople

•  ExperiencesofsCgmaanddiscriminaConaredifficulttomeasureandbothareunder-reported.

•  HIV-relatedsCgmacanbedividedinto:

–  An-cipated/perceiveds-gma–  Internalised/selfs-gma–  Discrimina-on

•  ThesurveyaskedparCcipantsiftheyhadworriedabout,avoidedorexperienceddifferenttreatmentinvarioussejngs,andaboutnega-veandposi-vefeelingsrelatedtotheirHIVinthelast12months

FEELINGSRELATEDTOHIVPosiCveandnegaCve

LivingwithHIVin2015

N=1576YES

Incontrolofmyhealth 61%PosiCveaboutlife 64%PosiCveaboutthefuture 62%

Asgoodasanyoneelse 58%

Q.Inthelast12months,haveyouexperiencedanyofthefollowingfeelingsinrela;ontoyourHIVstatus?

Self-image

N=1576YESFeltashamed 48%Feltguilty 45%Blamedmyself 48%Hadlowselfesteem 48%Blamedothers 23%Feltsuicidal 18%


Almostathirdofpar-cipants(28%)diagnosedinthelastyearreportedsuicidalidea-on.

NegaCveself-image

0%10%20%30%40%50%60%70%80%90%100%

Incontrolofhealth

PosiCveaboutfuture

PosiCveaboutlife Feelasgoodasanyoneelse

No

Yes


NegaCveself-imageanddepression

•  40%hadeverbeendiagnosedasdepressed–  62%ofparCcipantsthathadeverbeendepressedhadanegaCveselfimagescore

•  28%scoredhigh(>2)inthePHQ2depressionscreeningtool–  78%ofthosescreenedfordepressionhadanegaCveselfimagescore

•  18%reportedsuicidalideaCon–  87%ofparCcipantsreporCngsuicidalideaConhadanegaCveselfimagescore

NegaCveself-imageandseekingcare

GeneralPracCce•  13%ofallparCcipantsreportedavoidingtheirGP•  74%ofparCcipantsavoidingtheirGPhadanegaCveselfimagescore

DentalpracCces•  14%ofallparCcipantsreportedavoidingdentalpracCces

•  66%ofparCcipantsavoidingdentalpracCceshadanegaCveselfimagescore

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%

DISCLOSUREControl,supportandpressure

Disclosure

•  DisclosureisacomplexandmulCfacetedprocessofmakingavoluntaryorinvoluntarydecisionaboutwhotoinformaboutone’sHIVstatus

•  Itisolenagradualprocessofdisclosingtoanincreasingnumberofothersinone’snetworks

•  It’smeaninghassignificantlychangedoverthepastdecades–(‘beingundetectable’)

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

IfeltpressuretodisclosemyHIVstatusfrom…..

AsexualPartner(N=986) 11%Afamilymember(N=1063) 16%Closefriends(N=1191) 9%Leadersormembersofyourreligiouscommunity(N=146)

9%

Employer(N=637) 12%

However….In2015,

ExperiencesofHIVrelatedsCgmaanddiscriminaConin2015

An;cipateds;gma

Internaliseds;gma

Enacteds;gma

HealthCare(N=1528)

55%saidtheirDentalPrac-cewasawareoftheirHIVstatus.

HIVDisclosureinPrimaryCare88%saidtheirGPPrac-ce

wereawareoftheirHIVstatus.

88%

TimesincediagnosishadnoimpactonControl&Support

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

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

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

Conclusions•  TheUKhaswell-establishedanC-discriminaConlawsandpolicies,and

excellenthealthcare•  ThemajorityofpeoplelivingwithHIVintheUKfeelposiCveabouttheir

livesandhealth

However,–  HalfofpeoplelivingwithHIVhasanegaCveselfimageinrelaContotheirHIV

andalmostoneinfivefeltsuicidal–  BexeridenCficaConandsupportforpeoplewithnegaCveselfimageisrequired–  AsignificantnumberofpeopleconCnuetofeelorexperiencesCgmainarange

ofsejngsincludinghealthcaresejngs–  Thesefeelingscanbereducedwhenpeoplefeelincontrolofthedecisionto

disclosetheirHIVstatus

Reportcards

•  11reportcardsfocusingonregionsandkeypopulaCons:

ü NaConalü Englandü Scotlandü Walesü NorthernIrelandü London

ü MSMü BAMEü Womenü Transü Peoplewhoinjectdrugs

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

Worried–AnCcipatedSCgma

Q:Inthelast12months,haveyouworriedabout….?

26%26%

13%10%

9%

23%13%16%

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

Enacted-DiscriminaConQ:Inthelast12months,haveyouexperienced….?

16%16%

3%6%13%13%

3%3%3%

DiscriminaCon:transvs.cisparCcipantsTrans Cis

%Yes %RelatedtoHIV

9%18%

9% 5%8% 4%

7% 3%2%4%

3%

13%13%

3%

SCgmaanddiscriminaConinhealthcaresejngsinthelast12months

PosiCvefeelings

TransN=31

CisN=1,541

Incontrolofmyhealth 58% 61%

PosiCveaboutlife 45% 64%

PosiCveaboutthefuture 52% 62%

Asgoodasanyoneelse 45% 58%


NegaCvefeelings

TransN=31

CisN=1,541

Feltashamed 52% 48%

Feltguilty 45% 45%

Blamedmyself 39% 48%

Hadlowselfesteem 55% 48%

Blamedothers 29% 22%


DepressionandsuicidalideaCon

•  42%hadeverbeendiagnosedasdepressed

•  29%scoredhigh(>2)inthePHQ2depressionscreeningtool

•  13%reportedsuicidalideaConinrela-ontotheirHIV

Conclusions•  AhigherproporConoftransparCcipantswereworriedaboutdifferent

treatment,avoidedcareandfeltrefusedordelayedtreatmentinhealthcare

And…–  TransparCcipantsworriedaboutbeingtreateddifferentlyinvarioussocial

sejngs–  ParCcipantsreporCngavoidingcertainsituaConsduetotheirHIVstatus–  TransparCcipantsweremorelikelytoreportreceivingcertaintypesof

discriminaCone.g.twiceasmanytranspeoplereportedbeingphysicallyassaultedcomparedtocisgenderparCcipants

SCgmaSurveyUKQualitaCveStudy

TheStorysofar…DrLisaThorley

•  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)

•  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)

Thankyou

ThankyoutoallourparCcipantswhotookpartinthestudy!

alastair hudson, rebecca mbewe dr valerie delpech …€¦ · alastair hudson, rebecca mbewe dr...

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