The Role of Stigma Management in HIV Treatment Adherence
2. Materials and Methods
3.1. Orientation to HIV Stigma
3.1.1. Perceived Prevalence of HIV Stigma
3.1.2. Perceived Threat of HIV Stigma
I’ve been around people before I had it and they talk about it like it’s a nasty person’s disease and they want to stay away from anyone with it. They don’t want to touch nothing that they’ve handled. It’s just one of those things that people are afraid of. I’ve lost friends. I have cousins who pretend I’m dead.
Ninety-nine percent of people don’t know I have HIV. If they did, I wouldn’t have a job. I’ve handled claims where people were terminated from their jobs because they had AIDS. You’ve seen the movie Philadelphia. That’s nothing new. They won’t use that reason for terminating someone. I don’t care how good of an investigator I am, if my company found out I had it, I would be gone. They wouldn’t use that for an excuse, they’d come up with something else. That’s why I can’t get insurance- or try to get insurance- through my employer, because I’d have to tell them what I’ve got. That would get back to my employers, so I’d be out the insurance because I’d also be out a job. It’s not contagious, as you well know, but the stigma is still there. It’s still out there. It’s not as bad as it was ten years ago, but it’s still there.
Once they find out that you’ve got the virus, “oh no!” They just shut off. A lot of people still don’t understand it. I had my kids taken from me and the reason why I don’t have them back now is because I’m HIV positive. But the court ain’t gonna say that. They’re going to beat around the bush, but point blank that’s what it is, because my stepdaughter is telling my kids that I’m cutting myself and I’m feeding my blood to them some kind of way. And these are kids. And they they’re not aware that the virus dies when air hits it. So they don’t know the difference, ya know? But as long as we got grown people brain washing other people about this virus, we’ll never live a normal life.
3.1.3. Concern for HIV Stigma
It does not matter if somebody is there or not. This happened last week where I had a couple people over and somebody had a female friend there and I just went in the fridge, took out my pills, popped’em in my mouth, popped things back in place, and put it back in the fridge. That’s that. I don’t care. This is for me. My health. My life.
I have friends who’ve got diabetes, and they get looked at like they’re pariahs. If they get looked at like pariahs because of diabetes, how do you think they’re going to look at me? So no way do I tell people.
3.2. Stigma Management and Adherence
3.2.1. Direct Impairment of Adherence
3.2.2. Indirect Impairment of Adherence
My wife, she looks out for me. I know she’s trying to help, but I don’t want her asking me if I took my pills when I’m in front of other people. I know it’s cause she cares. I just don’t want her asking me in front of them.
Conflicts of Interest
- What are situations that make it difficult to take your medications?
- How might the stigma surrounding HIV affect the ways you or other people living with HIV take your medications?
- Have you ever skipped a dose of your HIV medications so that other people won’t find out?
- If so, how?
- If so, why?
- Are there any problems or drawbacks to other people helping you take your HIV medications?
- How do you keep or manage information about your HIV medications?
- World Health Organization. HIV/AIDS. 2019. Available online: https://www.who.int/en/news-room/fact-sheets/detail/hiv-aids (accessed on 31 August 2019).
- Blanchard, E.; Klibanov, O.M.; Axelrod, P.; Palermo, B.; Samuel, R. Virologic Success in an Urban HIV Clinic: Outcome at 12 Months in Patients Who Were HAART Naïve. HIV Clin. Trials 2008, 9, 186–191. [Google Scholar] [CrossRef] [PubMed]
- Zaragoza-Macias, E.; Cosco, D.; Nguyen, M.L.; del Rio, C.; Lennox, J. Predictors of success with highly active antiretroviral therapy in an antiretroviral-naive urban population. AIDS Res. Hum. Retrovir. 2010, 26, 133–138. [Google Scholar] [CrossRef] [PubMed][Green Version]
- Brashers, D.E.; Neidig, J.L.; Cardillo, L.W.; Dobbs, L.K.; Russell, J.A.; Haas, S.M. ‘In an important way, I did die’: Uncertainty and revival in persons living with HIV or AIDS. AIDS Care 1999, 11, 201–219. [Google Scholar] [CrossRef] [PubMed]
- Vance, D.E. Aging with HIV: Clinical considerations on an emerging population. Am. J. Nurs. 2010, 110, 42. [Google Scholar] [CrossRef] [PubMed][Green Version]
- Bavinton, B.R.; Pinto, A.N.; Phanuphak, N.; Grinsztejn, B.; Prestage, G.P.; Zablotska-Manos, I.B.; Jin, F.; Fairley, C.K.; Moore, R.; Roth, N. Viral suppression and HIV transmission in serodiscordant male couples: An international, prospective, observational, cohort study. Lancet HIV 2018, 5, e438–e447. [Google Scholar] [CrossRef]
- Loutfy, M.R.; Wu, W.; Letchumanan, M.; Bondy, L.; Antoniou, T.; Margolese, S.; Zhang, Y.; Rueda, S.; McGee, F.; Peck, R. Systematic review of HIV transmission between heterosexual serodiscordant couples where the HIV-positive partner is fully suppressed on antiretroviral therapy. PLoS ONE 2013, 8, e55747. [Google Scholar] [CrossRef]
- Harrigan, P.R.; Hogg, R.S.; Dong, W.W.; Yip, B.; Wynhoven, B.; Woodward, J.; Brumme, C.J.; Brumme, Z.L.; Mo, T.; Alexander, C.S. Predictors of HIV drug-resistance mutations in a large antiretroviral-naive cohort initiating triple antiretroviral therapy. J. Infect. Dis. 2005, 191, 339–347. [Google Scholar] [CrossRef][Green Version]
- Kalichman, S.C.; Cherry, C.; Amaral, C.M.; Swetzes, C.; Eaton, L.; Macy, R.; Grebler, T.; Kalichman, M.O. Adherence to antiretroviral therapy and HIV transmission risks: Implications for test-and-treat approaches to HIV prevention. AIDS Patient Care STDs 2010, 24, 271–277. [Google Scholar] [CrossRef][Green Version]
- Reynolds, N.R. The problem of antiretroviral adherence: A self-regulatory model for intervention. AIDS Care 2003, 15, 117–124. [Google Scholar] [CrossRef]
- Rochon, D.; Ross, M.W.; Looney, C.; Nepal, V.P.; Price, A.J.; Giordano, T.P. Communication strategies to improve HIV treatment adherence. Health Commun. 2011, 26, 461–467. [Google Scholar] [CrossRef]
- Kanters, S.; Park, J.J.; Chan, K.; Socias, M.E.; Ford, N.; Forrest, J.I.; Thorlund, K.; Nachega, J.B.; Mills, E.J. Interventions to improve adherence to antiretroviral therapy: A systematic review and network meta-analysis. Lancet HIV 2017, 4, e31–e40. [Google Scholar] [CrossRef][Green Version]
- Shubber, Z.; Shubber, Z.; Mills, E.J.; Nachega, J.B.; Vreeman, R.; Freitas, M.; Bock, P.; Nsanzimana, S.; Penazzato, M.; Appolo, T.; et al. Patient-reported barriers to adherence to antiretroviral therapy: A systematic review and meta-analysis. PLoS Med. 2016, 13, e1002183. [Google Scholar] [CrossRef] [PubMed]
- Rintamaki, L.S.; Weaver, F.M. The Social and Personal Dynamics of HIV Stigma. In Communication Perspectives on HIV/AIDS for the 21st Century; Routledge: New York, NY, USA, 2009; pp. 97–130. [Google Scholar]
- Katz, I.T.; Ryu, A.E.; Onuegbu, A.G.; Psaros, C.; Weiser, S.D.; Bangsberg, D.R.; Tsai, A.C. Impact of HIV-related stigma on treatment adherence: Systematic review and meta-synthesis. J. Int. AIDS Soc. 2013, 16, 18640. [Google Scholar] [CrossRef] [PubMed]
- Curioso, W.H.; Kepka, D.; Cabello, R.; Segura, P.; Kurth, A.E. Understanding the facilitators and barriers of antiretroviral adherence in Peru: A qualitative study. BMC Public Health 2010, 10, 13. [Google Scholar] [CrossRef][Green Version]
- Dlamini, P.S.; Wantland, D.; Makoae, L.N.; Chirwa, M.; Kohi, T.W.; Greeff, M.; Naidoo, J.; Mullan, J.; Uys, L.R.; Holzemer, W.L. HIV stigma and missed medications in HIV-positive people in five African countries. AIDS Patient Care STDs 2009, 23, 377–387. [Google Scholar] [CrossRef]
- Merten, S.; Kenter, E.; McKenzie, O.; Musheke, M.; Ntalasha, H.; Martin-Hilber, A. Patient-reported barriers and drivers of adherence to antiretrovirals in sub-Saharan Africa: A meta-ethnography. Trop. Med. Int. Health 2010, 15, 16–33. [Google Scholar] [CrossRef]
- Mo, P.K.; Mak, W.W. Intentionality of medication non-adherence among individuals living with HIV/AIDS in Hong Kong. AIDS Care 2009, 21, 785–795. [Google Scholar] [CrossRef]
- Wouters, E.; van Loon, F.; van Rensburg, D.; Meulemans, H. Community support and disclosure of HIV serostatus to family members by public-sector antiretroviral treatment patients in the free state province of South Africa. (Author abstract). AIDS Patient Care STDs 2009, 23, 357. [Google Scholar] [CrossRef]
- Rao, D.; Kekwaletswe, T.; Hosek, S.; Martinez, J.; Rodriguez, F. Stigma and social barriers to medication adherence with urban youth living with HIV. AIDS Care 2007, 19, 28–33. [Google Scholar] [CrossRef]
- Reisner, M.S.L.; Mimiaga, M.J.; Skeer, M.; Perkovich, B.; Johnson, C.V.; Safren, S.A. A review of HIV antiretroviral adherence and intervention studies among HIV-infected youth. Top. HIV Med. A Publ. Int. AIDS Soc. USA 2009, 17, 14–25. [Google Scholar]
- Kalichman, S.C.; Grebler, T. Stress and poverty predictors of treatment adherence among people with low-literacy living with HIV/AIDS. Psychosom. Med. 2010, 72, 810. [Google Scholar] [CrossRef] [PubMed][Green Version]
- Wolitski, R.; Pals, S.L.; Kidder, D.P.; Courtenay-Quirk, C.; Holtgrave, D.R. The Effects of HIV Stigma on Health, Disclosure of HIV Status, and Risk Behavior of Homeless and Unstably Housed Persons Living with HIV. AIDS Behav. 2009, 13, 1222–1232. [Google Scholar] [CrossRef] [PubMed]
- Bogart, L.M.; Wagner, G.J.; Galvan, F.H.; Klein, D.J. Longitudinal Relationships Between Antiretroviral Treatment Adherence and Discrimination Due to HIV-Serostatus, Race, and Sexual Orientation Among African-American Men with HIV. Ann. Behav. Med. 2010, 40, 184–190. [Google Scholar] [CrossRef] [PubMed][Green Version]
- Maxwell, K.D. An Examination of the Relation Among Stigma, Social Support, and Human Immunodeficiency Virus (HIV) Treatment Adherence Among African American Men who Have Sex with Men (MSM). Ph.D. Thesis, University of Maryland, Baltimore County, MD, USA, 2010. [Google Scholar]
- Rintamaki, L.S.; Davis, T.C.; Skripkauskas, S.; Bennett, C.L.; Wolf, M.S. Social stigma concerns and HIV medication adherence. AIDS Patient Care STDs 2006, 20, 359–368. [Google Scholar] [CrossRef]
- Sweeney, S.M.; Vanable, P.A. The association of HIV-related stigma to HIV medication adherence: A systematic review and synthesis of the literature. AIDS Behav. 2016, 20, 29–50. [Google Scholar] [CrossRef]
- Badahdah, A.M.; Pedersen, D.E. “I Want to Stand on My Own Legs”: A qualitative study of antiretroviral therapy adherence among HIV-positive women in Egypt. AIDS Care 2011, 23, 700–704. [Google Scholar] [CrossRef]
- Golin, C.; Isasi, F.; Bontempi, J.B.; Eng, E. Secret pills: HIV-positive patients’ experiences taking antiretroviral therapy in North Carolina. AIDS Educ. Prev. 2002, 14, 318–329. [Google Scholar] [CrossRef]
- Musumari, P.M.; Feldman, M.D.; Techasrivichien, T.; Wouters, E.; Ono-Kihara, M.; Kihara, M. “If I have nothing to eat, I get angry and push the pills bottle away from me”: A qualitative study of patient determinants of adherence to antiretroviral therapy in the Democratic Republic of Congo. AIDS Care 2013, 25, 1271–1277. [Google Scholar] [CrossRef][Green Version]
- Van Tam, V.; Pharris, A.; Thorson, A.; Alfven, T.; Larsson, M. “It is not that I forget, it’s just that I don’t want other people to know”: Barriers to and strategies for adherence to antiretroviral therapy among HIV patients in Northern Vietnam. AIDS Care 2011, 23, 139–145. [Google Scholar] [CrossRef][Green Version]
- Derlega, V.J.; Lovejoy, D.; Winstead, B. Personal accounts of disclosing and concealing HIV-positive test results: Weighing the benefits and risks. In HIV Infection and Social Interaction; Sage: Newbury Park, CA, USA, 1998; pp. 147–164. [Google Scholar]
- Goudge, J.; Manderson, L.; Ngoma, B.; Schneider, H. Stigma, identity and resistance among people living with HIV in South Africa. SAHARA-J J. Soc. Asp. HIV/AIDS 2009, 6, 94–104. [Google Scholar] [CrossRef][Green Version]
- Derlega, V.J.; Winstead, B.A.; Greene, K.; Serovich, J.; Elwood, W.N. Reasons for HIV disclosure/nondisclosure in close relationships: Testing a model of HIV–disclosure decision making. J. Soc. Clin. Psychol. 2004, 23, 747–767. [Google Scholar] [CrossRef][Green Version]
- Greene, K.; Valerian, J.D.; Gust, A.Y.; Sandra, P. Privacy and Disclosure of HIV in Interpersonal Relationships: A Sourcebook for Researchers and Practitioners; Routledge: New York, NY, USA, 2003; pp. 1–265. [Google Scholar]
- Serovich, J.M. A test of two HIV disclosure theories. AIDS Educ. Prev. 2001, 13, 355–364. [Google Scholar] [CrossRef] [PubMed][Green Version]
- Serovich, J.M.; Lim, J.-Y.; Mason, T.L. A retest of two HIV disclosure theories: The women’s story. Health Soc. Work 2008, 33, 23–31. [Google Scholar] [CrossRef] [PubMed]
- Yep, G.A. Disclosure of HIV Infection in Interpersonal Relationships: A Communication Boundary Management Approach. In Balancing the Secrets of Private Disclosures; Routledge: New York, NY, USA, 1999; pp. 99–112. [Google Scholar]
- Caughlin, J.P.; Bute, J.J.; Donovan-Kicken, E.; Kosenko, K.A.; Ramey, M.E.; Brashers, D.E. Do Message Features Influence Reactions to HIV Disclosures? A Multiple-Goals Perspective. Health Commun. 2009, 24, 270–283. [Google Scholar] [CrossRef]
- Goffman, E. The Presentation of Self in Everyday Life; Harmondsworth: London, UK, 1978. [Google Scholar]
- Rintamaki, L.S.; Brashers, D.E. Stigma and Intergroup Communication. In The Dynamics of Intergroup Communication; Peter Lang: New York, NY, USA, 2010; pp. 155–166. [Google Scholar]
- Charmaz, K. Grounded Theory as an Emergent Method. In Handbook of Emergent Methods; Guilford Press: New York, NY, USA, 2008; Volume 155, p. 172. [Google Scholar]
- Morse, J.M.; Barrett, M.; Mayan, M.; Olson, K.; Spiers, J. Verification strategies for establishing reliability and validity in qualitative research. Int. J. Qual. Methods 2002, 1, 13–22. [Google Scholar] [CrossRef]
- Morley, J.; Wertz, F.J.; Charmaz, K.; McMullen, L.; Josselson, R.; Anderson, R.; McSpadden, E. Five Ways of Doing Qualitative Analysis: Phenomenological Psychology, Grounded Theory, Discourse Analysis, Narrative Research, and Intuitive Inquiry; Guilford Press: New York, NY, USA, 2011. [Google Scholar]
- Johnson, J.M. In-Depth Interviewing. In Handbook of Interview Research: Context and Method; Sage Publications: Thousand Oaks, CA, USA, 2002; pp. 103–120. [Google Scholar]
- Morgan, D.L. Focus Group Interviewing. In Handbook of Interview Research: Context and Method; Sage Publications: Thousand Oaks, CA, USA, 2002; pp. 141–159. [Google Scholar]
- Guba, E.G.; Lincoln, Y.S. Competing Paradigms in Qualitative Research. In Handbook of Qualitative Research; Sage Publications: London, UK, 1994; pp. 105–117. [Google Scholar]
- Strauss, A.; Corbin, J. Basics of Qualitative Research; Sage Publications: Thousand Oaks, CA, USA, 1990. [Google Scholar]
- Creswell, J.W.; Poth, C.N. Qualitative Inquiry and Research Design: Choosing among Five Approaches; Sage Publications: Thousand Oaks, CA, USA, 2017. [Google Scholar]
- Wagner, P.J.; Curran, P. Health beliefs and physician identified “worried well”. Health Psychol. 1984, 3, 459–474. [Google Scholar] [CrossRef]
- Cohen, V.; Jellinek, S.P.; Teperikidis, L.; Berkovits, E.; Goldman, W.M. Room-temperature storage of medications labeled for refrigeration. Am. J. Health Syst. Pharm. 2007, 64, 1711–1715. [Google Scholar] [CrossRef][Green Version]
- DiMatteo, M.R. Social support and patient adherence to medical treatment: A meta-analysis. Health Psychol. 2004, 23, 207. [Google Scholar] [CrossRef][Green Version]
- Latkin, C.A.; Davey-Rothwell, M.A.; Knowlton, A.R.; Alexander, K.A.; Williams, C.T.; Boodram, B. Social network approaches to recruitment, HIV prevention, medical care, and medication adherence. J. Acquir. Immune Defic. Syndr. (1999) 2013, 63, S54. [Google Scholar] [CrossRef][Green Version]
- Malta, M.; Strathdee, S.A.; Magnanini, M.M.; Bastos, F.I. Adherence to antiretroviral therapy for human immunodeficiency virus/acquired immune deficiency syndrome among drug users: A systematic review. Addiction 2008, 103, 1242–1257. [Google Scholar] [CrossRef]
- Beer, L.; McCree, D.H.; Jeffries, W.L., IV; Lemons, A.; Sionean, C. Recent US Centers for Disease Control and Prevention Activities to Reduce HIV Stigma. J. Int. Assoc. Provid. AIDS Care (JIAPAC) 2019, 18, 2325958218823541. [Google Scholar] [CrossRef] [PubMed]
- Brown, L.; Macintyre, K.; Trujillo, L. Interventions to reduce HIV/AIDS stigma: What have we learned? AIDS Educ. Prev. 2003, 15, 49–69. [Google Scholar] [CrossRef] [PubMed]
- Rimal, R.N.; Creel, A.H. Appling social marketing principles to understand the effects of the radio diaries program in reducing HIV/AIDS stigma in Malawi. Health Mark. Q. 2008, 25, 119–146. [Google Scholar] [CrossRef] [PubMed]
- Crocker, J.; Voelkl, K.; Testa, M.; Major, B. Social stigma: The affective consequences of attributional ambiguity. J. Pers. Soc. Psychol. 1991, 60, 218–228. [Google Scholar] [CrossRef]
- Noring, S.; Dubler, N.N.; Birkhead, G.; Agins, B. A new paradigm for HIV care: Ethical and clinical considerations. Am. J. Public Health 2001, 91, 690. [Google Scholar] [PubMed][Green Version]
- Sorensen, J.L.; Mascovich, A.; Wall, T.; DePhilippis, D.; Batki, S.; Chesney, M. Medication adherence strategies for drug abusers with HIV/AIDS. AIDS Care 1998, 10, 297–312. [Google Scholar] [CrossRef] [PubMed]
- Enriquez, M.; Lackey, N.R.; O’Connor, M.C.; McKinsey, D.S. Successful adherence after multiple HIV treatment failures. J. Adv. Nurs. 2004, 45, 438–446. [Google Scholar] [CrossRef]
- Fowler, M.E. Recognizing the phenomenon of readiness: Concept analysis and case study. J. Assoc. Nurses AIDS Care 1998, 9, 72–76. [Google Scholar] [CrossRef]
- Berger, B.E.; Ferrans, C.E.; Lashley, F.R. Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Res. Nurs. Health 2001, 24, 518–529. [Google Scholar] [CrossRef]
- Van Poppel, M.N.; de Vet, H.C.; Koes, B.W.; Smid, T.; Bouter, L.M. Measuring sick leave: A comparison of self-reported data on sick leave and data from company records. Occup. Med. 2002, 52, 485–490. [Google Scholar] [CrossRef][Green Version]
- Chung, J.; Monroe, G.S. Exploring social desirability bias. J. Bus. Ethics 2003, 44, 291–302. [Google Scholar] [CrossRef]
- Gonyea, R.M. Self-reported data in institutional research: Review and recommendations. New Dir. Inst. Res. 2005, 2005, 73–89. [Google Scholar] [CrossRef]
|Time Since Diagnosis:||0–21 years|
|Orientation to Stigma||How people feel about HIV stigma|
|Perceived Prevalence of HIV Stigma||Belief in HIV stigma’s pervasiveness|
|Perceived Threat of HIV Stigma||Belief in HIV stigma’s severity|
|Concern for HIV Stigma||Degree of worry over HIV stigma|
|Stigma Management and Adherence||Coping that directly impairs adherence|
|Direct Impairment||Overtly missing or delaying medication|
|Medication Concealment–Public||Hiding medications in public|
|Medication Concealment–Private||Hiding medication in private|
|Medication Concealment–Storage||Inadvertently destroying medication|
|Indirect Impairment||Coping that indirectly impairs adherence|
|Social Support Management||Disrupting or facilitating support|
|Information Management||Hiding medication information|
|Information Avoidance||Foregoing sources of information|
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Rintamaki, L.; Kosenko, K.; Hogan, T.; Scott, A.M.; Dobmeier, C.; Tingue, E.; Peek, D. The Role of Stigma Management in HIV Treatment Adherence. Int. J. Environ. Res. Public Health 2019, 16, 5003. https://doi.org/10.3390/ijerph16245003
Rintamaki L, Kosenko K, Hogan T, Scott AM, Dobmeier C, Tingue E, Peek D. The Role of Stigma Management in HIV Treatment Adherence. International Journal of Environmental Research and Public Health. 2019; 16(24):5003. https://doi.org/10.3390/ijerph16245003Chicago/Turabian Style
Rintamaki, Lance, Kami Kosenko, Timothy Hogan, Allison M. Scott, Christopher Dobmeier, Erik Tingue, and David Peek. 2019. "The Role of Stigma Management in HIV Treatment Adherence" International Journal of Environmental Research and Public Health 16, no. 24: 5003. https://doi.org/10.3390/ijerph16245003