The Role of Intersectional Stigma in HIV Research ... · • Decrease in incidence of HIV...
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The Role of Intersectional Stigma in HIV Research: Identifying Risks and Benefits of Research Participation among HIV-Positive African American Women Nicole M. Overstreet, PhD Clark University Worcester, MA
Transcript of The Role of Intersectional Stigma in HIV Research ... · • Decrease in incidence of HIV...
TheRoleofIntersectionalStigmainHIVResearch:IdentifyingRisksandBenefitsofResearch
ParticipationamongHIV-PositiveAfricanAmericanWomen
NicoleM.Overstreet,PhDClarkUniversityWorcester,MA
AfricanAmericanWomenandHIV
• DecreaseinincidenceofHIVinfectionsamongAfricanAmericanwomen
• However,amongwomen,racial/ethnicdisparitiesinHIVremain.NewHIVinfectionsamongAfricanAmericanwomenare:• 5timesthatofHispanicwomen• 20timesthatofWhitewomen
• HIVresearchisvitaltounderstandingandreducingbarrierstoHIVtreatmentandamelioratinghealthdisparities
HIVResearchandMarginalizedPopulations
• Recruitmentmaybestymiedbyconcernsaboutparticipationharms
• Concernsaboutparticipationharmsrootedinhistoricalmedicalmaltreatmentoftenattheintersectionofrace,gender,andclass(Washington, 2006)
• E.g.,HenriettaLacks
• StigmamaybeanadditionalconcerninHIVresearch• Devaluationassociatedwithstatuslossanddiscrimination
(Goffman, 1963;Link&Phelan,2001)
• Researchprocessmaymakepowerdynamicssalientandincreaseconcernthatparticipationwillbelinkedtostatusloss
EthicalConsiderationsinScientificResearch
• Researchsuggeststhatmedicalmistrustandstigmamayshapeethicalconcernsintheresearchprocessamongmarginalizedgroupsinthefollowingways(Drotar,2008;Sieber,2008):• Fearsaboutbreachinconfidentiality• Concernsaboutprivacy• Participantdiscomfortinansweringresearchquestions• Increasedpsychologicaldistress• Consent
• Mitigatingsocialharmsisaprimarygoalinresearchethics,yetourunderstandingofethicalconcernsisseeminglydetachedfromtheintersectingidentitiesandinterlockingoppressionsthatmarginalizegroupsexperience.
ResearchGoals
• Intersectionality asaframeworktounderstandhowAfricanAmericanwomen’sintersectingidentities(e.g.,gender,class,HIV+status)shapeperspectivesonbenefitsandconcerns(e.g.,confidentiality,participantdistress)aboutparticipatinginHIVresearch
• DiscusshowperspectivescanenhanceresponsibleconductofHIVresearchwithAfricanAmericanwomen
(Collins,1990;Crenshaw,1991;Logie etal.,2011;May,2015)
Method• 97AfricanAmericanwomenlivingwithHIV
• Mage=47.96,SD=9.48(Range24-65)
• RecruitedatHIVcareclinicinBaltimore,MD
• Procedure:• ParticipantsfirstcompletedtheWomen’sHealthStudy(parentstudy),whichexaminedHIV,intimatepartnerviolence,andmentalhealth
• AfterWomen’sHealthStudy,participantscompletedcurrentstudy:aretrospectiveonlinesurveyoniPad askingabouttheirexperienceparticipating inWomen’sHealthStudy
• Open-endedquestionsaskingaboutperceivedbenefitsandrisksofparticipating inWomen’sHealthStudy
• Quantitativequestionsassessingstigmaassociatedwithintersectingidentities, benefits/risks ofresearchparticipation
• Willfocusonopen-endedresponses
• Remuneration:$50giftcard
Method
• Threeopen-endedquestions• Question1:WhatwasthegreatestbenefitofparticipatingintheWomen’sHealthStudy?
• Question2:WhatwasyourgreatestconcernaboutansweringquestionsintheWomen’sHealthStudy?
• Question3:WhatdoyouthinkwasthepurposeoftheWomen’sHealthStudy?
Method• Open-endedquestions
• Question1:WhatwasthegreatestbenefitofparticipatingintheWomen’sHealthStudy?
• Question2:WhatwasyourgreatestconcernaboutansweringquestionsintheWomen’sHealthStudy?
• Codes(Newman,2001;Drotar,2008;Sieber,2008)Q1(K =.75) Q2(K =.88)
ParticipationSatisfaction EmotionalReactions
PersonalBenefits PerceivedDrawbacks
GlobalEvaluation Confidentiality
Money/Other Incentives SocialDesirability
Other NoConcerns
Answering SensitiveQuestions
Other
Total#ofstatementscoded:291
RESULTS
What was the greatest benefit of participating in the Women’s Health Study?
ParticipationSatisfaction
77%
PersonalBenefits4850%GlobalEvaluation
2021%
Money/Other Incentives
1111%
Other22%
Missing99%
ParticipationSatisfaction
PersonalBenefits
GlobalEvaluation
Money/OtherIncentives
Other
Missing
GreatestBenefitPersonalBenefits:50%
• “Givemesometimetothinkaboutmylife andthequestionsthatwasask”
• “GettingtoseewhereIamtodayasfarasthepasttothepresent”
• “SeeinghowblessedIambasedonthequestionsasked”
Opportunityforself-reflection
•“Theyhelpwithmymeds”•“Tohaveabetterandpositiveunderstandingofhowimportantitiscaringformyself”•“Gettingbetterwithmyselfandmyhealth”•“Learningmoreaboutthedisease”
Benefitsspecificallylinkedtohealth/HIV
• “IrealizedIwasinanabusiverelationship”• “Helpedmeunderstandthedifferencebetweenviolentpartsofarelationshipthatmightrequiresomehelp”
• “Gettingabuseadviceandassistance”
Identifyingunhealthy
relationships• “Beingabletoknowyouhavegreatpeoplewhosupportyouandarewillingtohelpyou”
• “TheinfoIgot”• “Toexpressfeelings”• “Educationthatyougetfromitandthepersonthat’shavingthestudyiscaringaboutyou”
Sourceofsocialsupport
GreatestBenefitGlobalEvaluation:21%
• “Tohelpothers”• “Thepossibilitythatitmayhelpanother”• “ThatIwill beabletohelpsomeone”• “ThefactthatI’mhelpingwithacause”
Researchwasforagoodcause/useful
toothers
•“Theconcerntheyshow”•“Theeaseoftakingthestudyquestions.Wasgratefultoseequestionsrelatedtopartnerviolencebothphysicalandemotional”
Respectanddignitybytheresearchteam
• “TogetpositivefeedbackthatcanhelpwomenwithHIV”
• “ProvideinputtohelpHIV+peoplehavebetterqualityoflife”
Beingabletohelpotherslivingwith
HIV
GreatestBenefitIncentives,ParticipationSatisfaction,Other
• “Walmart giftcardhelpswithmonthlyexpenses”• “Transportation”• “Thatyoucantalkaboutwhatyouhavebeenthroughinyourlifeandthereissomeoneoutthereintheworldthatcareswhathappenstoyouandit’snotbadthatyoucangetagiftcardtoo”
Incentives11%
•“Enjoyingansweringquestions”•“Itwasgood,Ienjoyedit”•“Ijustlikebeinginstudies”
ParticipationSatisfaction
7%
• “Lettingoff”Other2%
What was your greatest concern about answering questions in the Women’s Health Study?
EmotionalReactions
77%
PerceivedDrawbacks22%
NoConcerns3334%
Confidentiality1415%
SocialDesirability
77%
Other1111%
Missing1617%
SensitiveQuestions
77%
EmotionalReactions
PerceivedDrawbacks
NoConcerns
Confidentiality
SocialDesirability
Other
Missing
SensitiveQuestions
GreatestConcernConfidentialityandOtherConcerns
• “Wouldmyinputstayconfidentialconcerningthegovernmentprogramsthatcurrentlyassistmewithrentandincome”
• “Otherpeoplegettingmypersonalrecords”• “Ifmyfriendwouldaskmewhatwasitabout”• “ThatyouwilltellandIdon’twantyoutodothat”• “MygreatestconcernwasmyinformationbeingsharedbutIwasassuredthatitwassafe”
Confidentiality15%
•“Knowingmore”•“Knowingthetruth”•“Honesty”•“Good”
Other11%
GreatestConcernEmotionalReactions,SensitiveQuestions,Desirability
• “Beingtruthful”• “Beingrealwithself”• “Justbeingscaredingeneraltobringitup”
EmotionalReactions
7%
•“Theabusivepart”•“Abouttheabuse”•“Thatmymatewasviolent”•“Whenyouwereaskedifyouwerehavinganalsex”
SensitiveQuestions
7%
• “WhetherIansweredwrongorright”• “Iwasworriedaboutwhatpeoplewouldthinkofme”• “Answeringthemtruthfully”
SocialDesirability
7%
Discussion• Overall,AfricanAmericanwomenexpressedpositivereactionstowardsparticipationinHIVresearch
• IntersectionofHIVandintimatepartnerviolencerealityformanywomeninthesample
• Intersectionalidentitiesinfluencedresearchconcerns(e.g.,confidentiality,reactionstosensitivequestions)
• Importantforresearchprocess:• Barrierstorecruitment• ValidityofStudyResponses• AddressingConcernsinInformedConsentandDebriefingProcess
FutureDirections:Intersectionality andResearchEthics
• Drawsourattentiontointerlocking systemsofoppression• Ethicalviolationsoftenoccuratcriticalintersections(e.g.,race,gender,class)
• Importanttoacknowledgehistoryandconsiderhowitmayshapeethicalconcerns
• Pushesustowardseradicating inequalityandsocialinequities
(Collins,1990;Crenshaw,1991;May,2015;Washinton,2006)
ACKNOWLEDGEMENTSvMyparticipants
vCollaboratorsvCeliaB.Fisher,PhDvJocelynAnderson,MSNvNancyGlass,PhD,MPHvJohnsHopkinsSchoolofNursing
vNationalInstituteonDrugAbusev(R25DA031608)
vHIVandDrugAbusePreventionResearchEthicsTrainingInstitute
Thank [email protected]
