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Published in: Journal of Urban Health 6/2007

01-11-2007

Experiences of Social Stigma and Implications For Healthcare Among a Diverse Population of HIV Positive Adults

Authors: Jennifer N. Sayles, Gery W. Ryan, Junell S. Silver, Catherine A. Sarkisian, William E. Cunningham

Published in: Journal of Urban Health | Issue 6/2007

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Abstract

Stigma profoundly affects the lives of people with HIV/AIDS. Fear of being identified as having HIV or AIDS may discourage a person from getting tested, from accessing medical services and medications, and from disclosing their HIV status to family and friends. In the present study, we use focus groups to identify the most salient domains of stigma and the coping strategies that may be common to a group of diverse, low-income women and men living with HIV in Los Angeles, CA (n=48). We also explore the impact of stigma on health and healthcare among HIV positive persons in our sample. Results indicate that the most salient domains of stigma include: blame and stereotypes of HIV, fear of contagion, disclosure of a stigmatized role, and renegotiating social contracts. We use the analysis to develop a framework where stigma is viewed as a social process composed of the struggle for both internal change (self-acceptance) and reintegration into the community. We discuss implications of HIV-related stigma for the mental and physical health of HIV-positive women and men and suggestions for possible interventions to address stigma in the healthcare setting.
Literature
1.
go back to reference Clark HJ, Lindner G, Armistead L, Austin BJ. Stigma, disclosure, and psychological functioning among HIV-infected and non-infected African-American women. Women Health. 2003;38(4):57–71.PubMed Clark HJ, Lindner G, Armistead L, Austin BJ. Stigma, disclosure, and psychological functioning among HIV-infected and non-infected African-American women. Women Health. 2003;38(4):57–71.PubMed
2.
go back to reference Klitzman RL, Kirshenbaum SB, Dodge B, et al. Intricacies and inter-relationships between HIV disclosure and HAART: a qualitative study. AIDS Care. Jul 2004;16(5):628–640.CrossRefPubMed Klitzman RL, Kirshenbaum SB, Dodge B, et al. Intricacies and inter-relationships between HIV disclosure and HAART: a qualitative study. AIDS Care. Jul 2004;16(5):628–640.CrossRefPubMed
3.
go back to reference Carr RL, Gramling LF. Stigma: a health barrier for women with HIV/AIDS. J Assoc Nurses AIDS Care. Sep–Oct 2004;15(5):30–39.CrossRefPubMed Carr RL, Gramling LF. Stigma: a health barrier for women with HIV/AIDS. J Assoc Nurses AIDS Care. Sep–Oct 2004;15(5):30–39.CrossRefPubMed
4.
go back to reference Macphail CL, Pettifor A, Coates T, Rees H. You must do the test to know your status: Attitudes to HIV voluntary counseling and testing for adolescents among South African youth and parents. Health Educ Behav. 2007 (In Press). DOI 10.1177/1090198106286442. Macphail CL, Pettifor A, Coates T, Rees H. You must do the test to know your status: Attitudes to HIV voluntary counseling and testing for adolescents among South African youth and parents. Health Educ Behav. 2007 (In Press). DOI 10.​1177/​1090198106286442​.
5.
go back to reference Yang H, Li X, Stanton B, Fang X, Lin D, Naar-King S. HIV-related knowledge, stigma, and willingness to disclose: A mediation analysis. AIDS Care. Oct 2006;18(7):717–724.CrossRefPubMed Yang H, Li X, Stanton B, Fang X, Lin D, Naar-King S. HIV-related knowledge, stigma, and willingness to disclose: A mediation analysis. AIDS Care. Oct 2006;18(7):717–724.CrossRefPubMed
6.
go back to reference Des Jarlais DC, Galea S, Tracy M, Tross S, Vlahov D. Stigmatization of newly emerging infectious diseases: AIDS and SARS. Am J Public Health. Mar 2006;96(3):561–567.CrossRefPubMed Des Jarlais DC, Galea S, Tracy M, Tross S, Vlahov D. Stigmatization of newly emerging infectious diseases: AIDS and SARS. Am J Public Health. Mar 2006;96(3):561–567.CrossRefPubMed
7.
go back to reference Rintamaki LS, Davis TC, Skripkauskas S, et al. Social stigma concerns and HIV medication adherence. IDS Patient Care STDS 2006;20(5):359–68.CrossRef Rintamaki LS, Davis TC, Skripkauskas S, et al. Social stigma concerns and HIV medication adherence. IDS Patient Care STDS 2006;20(5):359–68.CrossRef
8.
go back to reference Vanable PA, Carey MP, Blair DC, Littlewood RA. Impact of HIV-related stigma on health behaviors and psychological adjustment among HIV-positive men and women. AIDS Behav. Sep 2006;10(5):473–482.CrossRefPubMed Vanable PA, Carey MP, Blair DC, Littlewood RA. Impact of HIV-related stigma on health behaviors and psychological adjustment among HIV-positive men and women. AIDS Behav. Sep 2006;10(5):473–482.CrossRefPubMed
9.
go back to reference Peretti-Watel P, Spire B, Pierret J, Lert F, Obadia Y. Management of HIV-related stigma and adherence to HAART: evidence from a large representative sample of outpatients attending French hospitals (ANRS-EN12-VESPA 2003). AIDS Care. 2006;18(3):254–261.CrossRefPubMed Peretti-Watel P, Spire B, Pierret J, Lert F, Obadia Y. Management of HIV-related stigma and adherence to HAART: evidence from a large representative sample of outpatients attending French hospitals (ANRS-EN12-VESPA 2003). AIDS Care. 2006;18(3):254–261.CrossRefPubMed
10.
go back to reference Miles MS, Holditch-Davis D, Eron J, Black BP, Pedersen C, Harris DA. An HIV self-care symptom management intervention for African American mothers. Nurs Res. Nov–Dec 2003;52(6):350–360.CrossRefPubMed Miles MS, Holditch-Davis D, Eron J, Black BP, Pedersen C, Harris DA. An HIV self-care symptom management intervention for African American mothers. Nurs Res. Nov–Dec 2003;52(6):350–360.CrossRefPubMed
11.
go back to reference Goffman E. Notes on the Management of a Spoiled Identity. New York: Simon & Schuster; 1963. Goffman E. Notes on the Management of a Spoiled Identity. New York: Simon & Schuster; 1963.
12.
go back to reference Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol. 2001;27:363–385.CrossRef Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol. 2001;27:363–385.CrossRef
13.
go back to reference Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. Jul 2003;57(1):13–24.CrossRefPubMed Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. Jul 2003;57(1):13–24.CrossRefPubMed
14.
go back to reference Castro A, Farmer P. Understanding and addressing AIDS-related stigma: from anthropological theory to clinical practice in Haiti. Am J Public Health. Jan 2005;95(1):53–59.CrossRefPubMed Castro A, Farmer P. Understanding and addressing AIDS-related stigma: from anthropological theory to clinical practice in Haiti. Am J Public Health. Jan 2005;95(1):53–59.CrossRefPubMed
15.
go back to reference Alonzo AA, Reynolds NR. Stigma, HIV and AIDS: an exploration and elaboration of a stigma trajectory. Soc Sci Med. Aug 1995;41(3):303–315.CrossRefPubMed Alonzo AA, Reynolds NR. Stigma, HIV and AIDS: an exploration and elaboration of a stigma trajectory. Soc Sci Med. Aug 1995;41(3):303–315.CrossRefPubMed
16.
go back to reference Kalichman S, Simbayi L, Cain D, et al. Generalizing a model of health behaviour change and AIDS stigma for use. AIDS Care. 2006;18(3):178–182.CrossRefPubMed Kalichman S, Simbayi L, Cain D, et al. Generalizing a model of health behaviour change and AIDS stigma for use. AIDS Care. 2006;18(3):178–182.CrossRefPubMed
17.
go back to reference Piot P. AIDS: from crisis management to sustained strategic response. Lancet. Aug 5 2006;368(9534):526–530.CrossRefPubMed Piot P. AIDS: from crisis management to sustained strategic response. Lancet. Aug 5 2006;368(9534):526–530.CrossRefPubMed
18.
go back to reference Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Educ Prev. Feb 2003;15(1):49–69.CrossRefPubMed Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Educ Prev. Feb 2003;15(1):49–69.CrossRefPubMed
19.
go back to reference CDC. HIV/AIDS Surveillance Report, Vol 13. Atlanta, GA: CDC; 2003. CDC. HIV/AIDS Surveillance Report, Vol 13. Atlanta, GA: CDC; 2003.
20.
go back to reference CDC. An Epidemiologic Profile of HIV and AIDS: Los Angeles County. Atlanta, GA: CDC; 2004. CDC. An Epidemiologic Profile of HIV and AIDS: Los Angeles County. Atlanta, GA: CDC; 2004.
21.
go back to reference Bozzette SA, Berry SH, Duan N, et al. The care of HIV-infected adults in the United States. HIV Cost and Services Utilization Study Consortium. N Engl J Med. Dec 24 1998;339(26):1897–1904.CrossRefPubMed Bozzette SA, Berry SH, Duan N, et al. The care of HIV-infected adults in the United States. HIV Cost and Services Utilization Study Consortium. N Engl J Med. Dec 24 1998;339(26):1897–1904.CrossRefPubMed
22.
go back to reference Kreuger RA. Focus Groups—A Practical Guide for Applied Research. Thousand Oaks: Sage; 2000. Kreuger RA. Focus Groups—A Practical Guide for Applied Research. Thousand Oaks: Sage; 2000.
23.
go back to reference Lincoln Y, Guba E. Naturalisitc Inquiry. Beverly Hills, CA: Sage; 1985. Lincoln Y, Guba E. Naturalisitc Inquiry. Beverly Hills, CA: Sage; 1985.
24.
go back to reference Weller S, Romney AK. Systematic Data Collection. Newbury Park, CA: Sage; 1988. Weller S, Romney AK. Systematic Data Collection. Newbury Park, CA: Sage; 1988.
25.
go back to reference Lepley C. Affinity maps and relationship diagrams: two tools to enhance performance improvement. J Nurs Care Qual. 1999;13:75–83.PubMed Lepley C. Affinity maps and relationship diagrams: two tools to enhance performance improvement. J Nurs Care Qual. 1999;13:75–83.PubMed
26.
go back to reference Rao S, Carter, WB, Matles, DL et al. Development of subscales from the symptoms/problems and effects of kidney disease scales of the kidney disease quality of life instrument. Clin Ther. 2000;22(9):1099–1111.CrossRefPubMed Rao S, Carter, WB, Matles, DL et al. Development of subscales from the symptoms/problems and effects of kidney disease scales of the kidney disease quality of life instrument. Clin Ther. 2000;22(9):1099–1111.CrossRefPubMed
27.
go back to reference Ryan G, Bernard HR. Techniques to identify themes in qualitative data. Field Methods. 2003;15(1):85–109.CrossRef Ryan G, Bernard HR. Techniques to identify themes in qualitative data. Field Methods. 2003;15(1):85–109.CrossRef
28.
go back to reference Donovan MC. The problem with making AIDS comfortable: federal policy making and the rhetoric of innocence. J Homosex. 1997;32(3–4):115–144.CrossRefPubMed Donovan MC. The problem with making AIDS comfortable: federal policy making and the rhetoric of innocence. J Homosex. 1997;32(3–4):115–144.CrossRefPubMed
29.
go back to reference Golin C, Isasi F, Bontempi JB, Eng E. Secret pills: HIV-positive patients’ experiences taking antiretroviral therapy in North Carolina. AIDS Educ Prev. Aug 2002;14(4):318–329.CrossRefPubMed Golin C, Isasi F, Bontempi JB, Eng E. Secret pills: HIV-positive patients’ experiences taking antiretroviral therapy in North Carolina. AIDS Educ Prev. Aug 2002;14(4):318–329.CrossRefPubMed
30.
go back to reference Ware NC, Wyatt MA, Tugenberg T. Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS. AIDS Care. Nov 2006;18(8):904–910.CrossRefPubMed Ware NC, Wyatt MA, Tugenberg T. Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS. AIDS Care. Nov 2006;18(8):904–910.CrossRefPubMed
31.
go back to reference Lekas HM, Siegel K, Schrimshaw EW. Continuities and discontinuities in the experiences of felt and enacted stigma among women with HIV/AIDS. Qual Health Res. Nov 2006;16(9):1165–1190.CrossRefPubMed Lekas HM, Siegel K, Schrimshaw EW. Continuities and discontinuities in the experiences of felt and enacted stigma among women with HIV/AIDS. Qual Health Res. Nov 2006;16(9):1165–1190.CrossRefPubMed
Metadata
Title
Experiences of Social Stigma and Implications For Healthcare Among a Diverse Population of HIV Positive Adults
Authors
Jennifer N. Sayles
Gery W. Ryan
Junell S. Silver
Catherine A. Sarkisian
William E. Cunningham
Publication date
01-11-2007
Publisher
Springer US
Published in
Journal of Urban Health / Issue 6/2007
Print ISSN: 1099-3460
Electronic ISSN: 1468-2869
DOI
https://doi.org/10.1007/s11524-007-9220-4

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