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Internalized Stigma Among African Americans Living with HIV: Preliminary Scale Development Based on Qualitative Data

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Stigma, Discrimination and Living with HIV/AIDS

Abstract

In 2004, the Centers for Disease Control reported that AIDS was the leading cause of death for African American women between the ages of 25 and 34 and African American men between the ages of 35 and 44 in the United States. Researchers have explained the impact of HIV/AIDS in African American communities in terms of delays in accessing care and difficulties in adhering to medication regimens. Research findings suggest that culturally appropriate interventions developed to reduce HIV/AIDS stigma could help improve treatment adherence and, in turn, improve health outcomes for African Americans living with HIV/AIDS. In order to better understand the cultural experience of HIV stigma, we conducted 20 individual cognitive interviews with African American men and women living with HIV in Chicago who were seeking treatment from an HIV clinic based at a large academic medical center. We analyzed transcriptions of these interviews using a phenomenological and content analytic framework. The data helped us to adapt a stigma scale to help us better assess the severity of stigma as it is experienced, perceived, and internalized.

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References

  • Berger, M. (2006). Workable sisterhood. Princeton: Princeton University Press.

    Google Scholar 

  • Black, B. P., & Miles, M. S. (2002). Calculating the risks and benefits of disclosure in African American women who have HIV. JOGNN – Journal of Obstetric, Gynecologic, and Neonatal Nursing, 31(6), 688–697.

    Google Scholar 

  • Brooks, R. A., Etzel, M. A., Hinojos, E., Henry, C. L., & Perez, M. (2005). Preventing HIV among Latino and African American gay and bisexual men in a context of HIV-related stigma, discrimination, and homophobia: Perspectives of providers. AIDS Patient Care and STDs, 19(11), 737–744.

    Article  Google Scholar 

  • Cella, D., Gershon, R., Lai, J., & Choi, S. (2007). The future of outcomes measurement: Item banking, tailored short-forms, and computerized adaptive assessment. Quality of Life Research, 16(Supplement 1), 133–141.

    Article  Google Scholar 

  • Chesney, M., Ickovics, J., Hecht, F. M., Sikipa, G., & Rabkin, J. (1999). Adherence: A necessity for successful HIV combination therapy. AIDS, 13(Supplement A), S271–S278.

    Google Scholar 

  • Corrigan, P. W., & Penn, D. L. (1999). Lessons from social psychology on discrediting psychiatric stigma. American Psychologist, 54(9), 765–776.

    Article  Google Scholar 

  • Corrigan, P. W., & Watson, A. C. (2002). The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice, 9(1), 35–53.

    Article  Google Scholar 

  • Corrigan, P., Watson, A., & Barr, L. (2006). The self-stigma of mental illness: Implications for self esteem and self efficacy. Journal of Social and Clinical Psychology, 25(9), 875–884.

    Article  Google Scholar 

  • Foster, P. P., & Gaskins, S. W. (2009). Older African Americans’ management of HIV/AIDS stigma. AIDS Care: Psychological and Socio-Medical Aspects of AIDS/HIV, 21(10), 1306–1312.

    Article  Google Scholar 

  • Golin, C., Isasi, F., Bontempi, J. B., & Eng, E. (2002). Secret pills: HIV-positive patients’ experiences taking antiretroviral therapy in North Carolina. AIDS Education and Prevention, 14(4), 318–329.

    Article  Google Scholar 

  • Kalichman, S. (1998). Understanding AIDS (2nd ed.). Washington, DC: American Psychological Association.

    Google Scholar 

  • Kinsler, J. J., Wong, M. D., Sayles, J. N., Davis, C., & Cunningham, W. E. (2007). The effect of perceived stigma from a health care provider on access to care among a low-income HIV-­positive population. AIDS Patient Care and STDs, 21(8), 584–592.

    Article  Google Scholar 

  • Klitzman, R. L., Kirshenbaum, S. B., Dodge, B., Remien, R. H., Ehrhardt, A. A., Johnson, M. O., & The Nimh Healthy Living Trial Group. (2004). Intricacies and inter-relationships between HIV disclosure and HAART: A qualitative study. AIDS Care, 16(5), 628–640.

    Article  Google Scholar 

  • Lee, R. S., Kochman, A., & Sikkema, K. J. (2002). Internalized stigma among people living with HIV-AIDS. AIDS and Behavior, 6(4), 309–319.

    Article  Google Scholar 

  • Lichtenstein, B. (2004). Caught at the clinic: African American men, stigma, and STI treatment in the Deep South. Gender and Society, 18(3), 369–388.

    Article  Google Scholar 

  • Link, B., & Phelan, J. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385.

    Article  Google Scholar 

  • Morse, J. (2000). Determining sample size. Qualitative Health Research, 10, 3–5.

    Article  Google Scholar 

  • Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks: Sage.

    Google Scholar 

  • Newman, P. A., Williams, C. C., & Massaquoi, N. (2008). HIV prevention for black women: Structural barriers and opportunities. Journal of Health Care for the Poor and Underserved, 19(3), 829–841.

    Article  Google Scholar 

  • Nyblade, L. C. (2006). Measuring HIV stigma: Existing knowledge and gaps. Psychology, Health & Medicine, 11(3), 335–345.

    Article  Google Scholar 

  • Rao, D., Kekwaletswe, T. C., Hosek, S., Martinez, J., & Rodriguez, F. (2007). Stigma and social barriers to medication adherence with urban youth living with HIV. AIDS Care, 19(1), 28–33.

    Article  Google Scholar 

  • Rao, D., Choi, S., Victorson, D., Bode, R., Heinemann, A., Peterman, A., & Cella, D. (2009). Measuring stigma across neurological conditions: The development of the stigma scale for chronic illness (SSCI). Quality of Life Research, 18, 585–595.

    Article  Google Scholar 

  • Rao, D., Gela, N., Daley, E., Kattezham, R., Rodriguez, G., & Cella, D. (2010). Developing a measure of health-related quality of life for women with cervical dysplasia resulting from human papillomavirus infection. International Journal of STD and AIDS, 21(10), 697–701.

    Article  Google Scholar 

  • Rao, D., Feldman, B., Fredericksen, R., Crane, P., Simoni, J., Kitahata, M., & Crane, H. (2011). A structural equation model of HIV-related stigma, depressive symptoms, and medication adherence. AIDS and Behavior, 16(3), 711–716. doi:10.1007/s10461-011-9915-0.

    Article  Google Scholar 

  • Reidpath, D. D., & Chan, K. (2005). A method for the quantitative analysis of the layering of HIV-­related stigma. AIDS Care, 17(4), 425–432.

    Article  Google Scholar 

  • Rintamaki, L. S., Davis, T. C., Skripkauskas, S., Bennett, C. L., & Wolf, M. S. (2006). Social stigma concerns and HIV medication adherence. AIDS Patient Care and STDs, 20(5), 359–368.

    Article  Google Scholar 

  • Rusch, N., Angermeyer, M., & Corrigan, P. (2005). Mental illness stigma: Concepts, consequences, and initiative to reduce stigma. European Psychiatry, 20(8), 529–539.

    Article  Google Scholar 

  • Siegel, K., Karus, D., & Schrimshaw, E. W. (2000). Racial differences in attitudes toward protease inhibitors among older HIV-infected men. AIDS Care, 12(4), 423–434.

    Article  Google Scholar 

  • Treisman, G., & Angelino, A. (2004). The psychiatry of AIDS. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Utsey, S., Giesbrecht, N., Hook, J., & Stanard, P. (2008). Cultural, sociofamilial, and psychological resources that inhibit psychological distress in African Americans exposed to stressful life events and race-related stress. Journal of Counseling Psychology, 55, 49–62.

    Article  Google Scholar 

  • Van Brakel, W. H. (2006). Measuring health-related stigma – A literature review. Psychology, Health & Medicine, 11(3), 307–334.

    Article  Google Scholar 

  • Vyavaharkar, M., Moneyham, L., Corwin, S., Saunders, R., Annang, L., & Tavakoli, A. (2009). Relationships between stigma, social support, and depression in HIV-infected African American women living in the rural southeastern United States. The Journal of the Association of Nurses in AIDS Care, 21(2), 144–152.

    Article  Google Scholar 

  • Ware, N. C., Wyatt, M. A., & Tugenberg, T. (2006). Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS. [Research support, N.I.H., Extramural]. AIDS Care, 18(8), 904–910.

    Article  Google Scholar 

  • Willis, G. B. (1999). Cognitive interviewing: A “how to” guide, from the short course “Reducing Survey Error through Research on the Cognitive and Decision Processes in Surveys”. Paper presented at the meeting of the American Statistical Association.

    Google Scholar 

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Correspondence to Deepa Rao .

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Rao, D., Andrasik, M., Acharya, X., Simoni, J.M. (2013). Internalized Stigma Among African Americans Living with HIV: Preliminary Scale Development Based on Qualitative Data. In: Liamputtong, P. (eds) Stigma, Discrimination and Living with HIV/AIDS. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-6324-1_9

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