Adherence and the Lie in a HIV Prevention Clinical Trial

Medical Anthropology: Cross Cultural Studies in Health and Illness

Volumn 35, Issue 6, 2016, Pages 503-516

  Stadler, Jonathan ^a   Scorgie, Fiona ^a   van der Straten, Ariane ^b   Saethre, Eirik ^c  

^a UNIVERSITY OF THE WITWATERSRAND   (South Africa)

^b UNIVERSITY OF CALIFORNIA   (United States)

^c UNIVERSITY OF HAWAII   (United States)

Author keywords

Adherence; clinical trials; lying; morality; pre exposure prophylaxis

Indexed keywords

AFRICAN; ASSERTIVENESS; CLINICAL TRIAL; FEMALE; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS; INVESTMENT; MORALITY; MOTIVATION; PRE-EXPOSURE PROPHYLAXIS; PREVENTION; SOUTH AFRICA; CLINICAL TRIAL (TOPIC); DECEPTION; DOCTOR PATIENT RELATION; ETHNOLOGY; HIV INFECTIONS; MALE; MEDICAL ANTHROPOLOGY; MEDICATION COMPLIANCE;

ANTI HUMAN IMMUNODEFICIENCY VIRUS AGENT;

ANTHROPOLOGY, MEDICAL; ANTI-HIV AGENTS; CLINICAL TRIALS AS TOPIC; DECEPTION; FEMALE; HIV INFECTIONS; HUMANS; MALE; MEDICATION ADHERENCE; PHYSICIAN-PATIENT RELATIONS; PRE-EXPOSURE PROPHYLAXIS; SOUTH AFRICA;

EID: 84951270259     PISSN: 01459740     EISSN: 15455882     Source Type: Journal    
DOI: 10.1080/01459740.2015.1116528     Document Type: Article

References (50)

1. K.R.Amico, L.E.Mansoor, A.Corneli, K.Torjesen, and A.van der Straten. 2013 Adherence support approaches in biomedical HIV prevention trials:experiences, insights and future directions from four multisite prevention trials. AIDS and Behavior 17(6):2143–2155.
2. J.Auerbach, 2013 CROI 2013:The VOICE Results—A Social Scientist’s Perspective. R. O’Neal, ed. Vol. 2014. http://betablog.org/voice-results-social-science-perspective/.
3. D.Backhurst, 1992 On lying and deceiving. Journal of Medical Ethics 18:63–66.
4. J.A.Barnes, 1994 A Pack of Lies:Towards a Sociology of Lying. New York:Cambridge University Press.
5. J.Biehl, 2006 Will to live:AIDS drugs and local economies of salvation. Public Culture 18(3):457–472.
6. W.Bleek, 1987 Lying informants:A fieldwork experience from Ghana. Population and Development Review 13(2):314–322.
7. J.Carsten, 2013 ‘Searching for the truth’:Tracing the moral properties of blood in Malaysian clinical pathology labs. Journal of the Royal Anthropological Institute 19(1):S130–S148.
8. M.Cornell, M.Schomaker, and D.B.Garone. 2012 Gender differences in survival among adult patients starting antiretroviral therapy in South Africa:A Multicentre Cohort Study. PLoS Med 9(9):e1001304.
9. L.Crandon-Malamud, 1997 Phantoms and physicians:Social change through medical pluralism. In The Anthropology of Medicine:From Culture to Method. L.Romanucci-Ross, D.Moerman, and L.Tancredi, eds. Pp. 85–112. New York:Bergin & Garvey.
10. S.Delany-Moretlwe, J.Stadler, P.Mayaud, and H.Rees. 2011 Investing in the future:Lessons learnt from communicating the results of HSV/HIV intervention trials in South Africa. Health Research Policy & Systems 9(Suppl. 1):1–9.
11. S.Fainzang, 2002 Lying, secrecy and power within the doctor patient relationship. Anthropology & Medicine 9(2):117–133.
12. J.A.Fisher, 2009 Medical Research for Hire:The Political Economy of Pharmaceutical Clinical Trials. New Brunswick, NJ:Rutgers University Press.
13. N.Fraser, and L.Gordon. 1994 A genealogy of dependency:Tracing a keyword of the US Welfare State. Signs 19(2):309–336.
14. V.G.Freeman, S.S.Rathore, K.P.Weinfurt, K.A.Schulman, and D.P.Sulmasy. 1999 Physician deception of third-party payers. Archives of Internal Medicine 159(19):2263–2270.
15. E.Goffman, 1963 Stigma:Notes on the management of spoiled identity. Englewood Cliffs, NJ:Prentice-Hall.
16. K.Hancock, J.Clayton, S.Parker, S.Wal der, P.Butow, S.Carrick, D.Currow et al. 2007 Truth-telling in discussing prognosis in advanced life-limiting illnesses:A systematic review. Palliative Medicine 21(6):507–517.
17. B.Harris, J.Goudge, J.Atagubab, D.McIntyre, N.Nxumalo, S.Jikwana, and M.Chersich. 2011 Inequities in access to health care in South Africa. Journal of Public Health Policy 32(Suppl.):S102–S123.
18. M.Hunter, 2007 The changing political economy of sex in South Africa:The significance of unemployment and inequalities to the scale of the AIDS pandemic. Social Science & Medicine 64:689–700.
19. J.Jackson, 1991 Telling the Truth. Journal of Medical Ethics 17:5–9.
20. C.W.Kihato, 2007 Invisible lives, inaudible voices? The social conditions of migrant women in Johannesburg. African Identities 5(1):89–110.
21. S.Leclerc-Madlala, 2006 ‘We will eat when I get the grant’:Negotiating AIDS, poverty and antiretroviral treatment in South Africa. African Journal of AIDS Research 5(3):249–256.
22. T.Leggett, 2002 A den of iniquity:Inside Hillbrow’s residential hotels. SA Crime Quarterly 2:19–22.
23. D.Lupton, 2003 Medicine as Culture:Illness, Disease and the Body in Western Societies. London:Sage.
24. H.Macgregor, 2006 ‘The grant is what I eat’:The politics of social security and disability in the Post-Apartheid South African State. Journal of Biosocial Sciences 38:43–55.
25. B.Magazi, J.Stadler, S.Delany-Moretlwe, E.Montgomery, F.Mathebula, M.Hartmann, and A.van der Straten. 2014 Influences on visit retention in clinical trials:Insights from qualitative research during the VOICE trial in Johannesburg, South Africa. BMC Women’s Health 14(88):1–8.
26. J.M.Marrazzo, G.Ramjee, B.A.Richardson, K.Gomez, N.Mgodi, G.Nair, T.Palanee, C.Nakabiito, A.van der Straten, and L.Noguchi. 2015 Tenofovir-based preexposure prophylaxis for HIV infection among African women. New England Journal of Medicine 372(6):509–518.
27. W.Marshall, 2005 AIDS, race and the limits of science. Social Science & Medicine 60:2515–2525.
28. J.Maskovsky, 2005 Do people fail drugs, or do drugs fail people?:The discourse of adherence. Transforming Anthropology 13:136–142.
29. R.McKay, 2012 Documentary disorders:Managing medical multiplicity in Maputo, Mozambique. American Ethnologist 39(3):545–561.
30. C.Montgomery, 2012 Making prevention public:The co-production of gender and technology in HIV prevention research. Social Studies of Science 42(6):922–944.
31. A.Morris, 1999 Bleakness and Light:Inner City Transition in Hillbrow, Johannesburg. Johannesburg, South Africa:Witwatersrand University Press.
32. J.Nachega, M.Hislop, D.Dowdy, M.Lo, S.Omer, L.Regensberg, R.Chaisson, and G.Maartens. 2006 Adherence to highly active antiretroviral therapy assessed by pharmacy claims predicts survival in HIV-infected South African adults. Journal of Acquired Immune Deficiency Syndromes 43(1):78–84.
33. S.R.Nachman, 1984 Lies my informants told me. Journal of Anthropological Research 40:536–555.
34. J.Picket, 2013 VOICE lesson:It’s unfair to be non-adherent. In IRMA—Rectal Microbicide Advocacy. www.irma-rectalmicrobicides.blogspot.co.za.
35. R.J.Prince, 2014 Precarious projects:Conversions of (biomedical) knowledge in an East African City. Medical Anthropology 33(1):68–83.
36. P.Resnick, 1994 Malingering. Journal of Forensic Psychiatry 5(1):1–4.
37. O.Shisana, T.Rehle, L.Simbayi, K.Zuma, S.Jooste, N.Zungu, D.Labadarios, and D.Onoya. 2014 South African National HIV Prevalence, Incidence and Behaviour Survey, 2012. Cape Town, South Africa:HSRC Press.
38. D.K.Sokol, 2006 How the doctor’s nose has shortened over time; a historical overview of the truth-telling debate in the doctor-patient relationship. Journal of the Royal Society of Medicine 99(12):632–636.
39. J.Stadler, and S.Delany. 2006 The healthy brothel:Sex workers’ perceptions and experiences of clinical services in Hillbrow, South Africa. Culture, Health and Sexuality 8(5):451–464.
40. J.Stadler, C.Dugmore, E.Venables, C.MacPhail, and S.Delany-Moretlwe. 2013 Cognitive mapping:Using local knowledge for planning health research. BMC Medical Research Methodology 13:96.
41. S.Suh, 2014 Rewriting abortion:Deploying medical records in jurisdictional negotiation over a forbidden practice in Senegal. Social Science & Medicine 108:20–33.
42. C.L.Tishler, and S.Bartholomae. 2003 Repeat participation among normal healthy research volunteers:Professional guinea pigs in clinical trials? Perspectives in Biology and Medicine 46(4):508–520.
43. A.N.Turner, A.E.De Kock, A.Meehan-Ritter, K.Blanchard, and M.H.Sebola. 2009 Many vaginal microbicide trial participants acknowledged they had misreported sensitive sexual behavior in face-to-face interviews. Journal of Clinical Epidemiology 62:759–765.
44. A.van der Straten, A.Mayo, E.R.Brown, K.R.Amico, H.Cheng, N.Laborde, J.Marrazzo, and K.Torjesen. 2014 Perceptions and Experiences with the VOICE Adherence Strengthening Program (VASP) in the MTN-003 Trial. AIDS and Behaviour doi:10.1007/s10461-014-0945-2
45. A.van der Straten, E.T.Montgomery, P.Musara, J.Etima, S.Naidoo, N.Laborde, M.Hartmann et al. 2015 Disclosure of pharmacokinetic drug results to understand nonadherence:Results from a qualitative study. AIDS 29(16):2161–2171
46. van A.der Straten, J.Stadler, E.Montgomery, M.Hartmann, B.Magazi, F.Mathebula, K.Schwartz, N.Laborde, and L.Soto-Torres. 2014b Women’s experiences with oral and vaginal pre-exposure prophylaxis:The VOICE-C qualitative study in Johannesburg, South Africa. PLoS One 9(2):e89118.
47. E.van Dongen, 2002 Theatres of the lie:‘Crazy’ deception and lying as drama. Anthropology & Medicine 9(2):135–151.
48. E.van Dongen, and S.Fainzang. 2002 Lying, misery and illness:Towards a medical anthropology of the lie. Anthropology & Medicine 9(2):85–95.
49. E.Venables, 2011 We are proud of this tower:Health and high rises in Inner City Johannesburg. Etnofoor 23(1):124–143.
50. J.Zigon, and C.J.Throop. 2014 Moral experience:Introduction. Ethos 42(1):1–15.