Skip to main content

Advertisement

Log in

Perceived discrimination in clinical care in a nationally representative sample of HIV-infected adults receiving health care

  • Original Article
  • Published:
Journal of General Internal Medicine Aims and scope Submit manuscript

Abstract

BACKGROUND: Perceived discrimination in clinical settings could discourage HIV-infected people from seeking health care, adhering to treatment regimens, or returning for follow-up.

OBJECTIVES: This study aims to determine whether HIV-infected people perceive that physicians and other health care providers have discriminated against them.

DESIGN, PARTICIPANTS: Cross-sectional data (1996 to 1997) from the HIV Cost and Services Utilization Study (HCSUS), which conducted in-person interviews with a nationally representative probability sample of 2,466 HIV-infected adults receiving health care within the contiguous U.S.

MEASUREMENTS: Reports of whether health care providers have been uncomfortable with the respondent, treated the respondent as an inferior, preferred to avoid the respondent, or refused the respondent service. Questions also covered the types of providers who engaged in these behaviors.

RESULTS: Twenty-six percent of HIV-infected adults receiving health care reported experiencing at least 1 of 4 types of perceived discrimination by a health care provider since becoming infected with HIV, including 8% who had been refused service. White respondents (32%) were more likely than others (27%) and Latinos (21%) and nearly twice as likely as African Americans (17%) to report perceived discrimination (P<.001). Respondents whose first positive HIV test was longer ago were also more likely to report discrimination (P<.001). Respondents who reported discrimination attributed it to physicians (54%), nurses and other clinical staff (39%), dentists (32%), hospital staff (31%), and case managers or social workers (8%).

CONCLUSIONS: Many HIV-infected adults believe that their clinicians have discriminated against them. Clinicians should make efforts to address circumstances that lead patients to perceive discrimination, whether real or imagined.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Gostin LO. The AIDS litigation project. A national review of court and human rights commission decisions, Part II: discrimination. JAMA. 1990;263:2086–93.

    Article  PubMed  CAS  Google Scholar 

  2. Herek GM. AIDS and stigma. Am Behav Sci. 1999;42:1106–16.

    Google Scholar 

  3. Gostin LO, Feldblum C, Webber DW. Disability discrimination in America: HIV/AIDS and other health conditions. JAMA. 1999;281:745–52.

    Article  PubMed  CAS  Google Scholar 

  4. Herek GM, Capitanio JP, Widaman KF. HIV-related stigma and knowledge in the United States: prevalence and trends, 1991–1999. Am J Public Health. 2002;92:371–7.

    PubMed  Google Scholar 

  5. Annas GJ. Protecting patients from discrimination—the Americans with Disabilities Act and HIV infection. N Engl J Med. 1998;339:1255–9.

    Article  PubMed  CAS  Google Scholar 

  6. Shapiro J, Webber DW. Access to public services and accommodations. In: Webber DW, ed. AIDS and the Law. 3rd edn, Vol 4. New York, NY: John Wiley & Sons; 1997:177–203.

    Google Scholar 

  7. Norton R, Schwartzbaum J, Wheat J. Language discrimination of general physicians: AIDS metaphors used in the AIDS crisis. Commun Res. 1990;17:809–26.

    Article  Google Scholar 

  8. Kass NE, Faden RR, Fox R, Dudley J. Homosexual and bisexual men’s perceptions of discrimination in health services. Am J Public Health. 1992;82:1277–9.

    PubMed  CAS  Google Scholar 

  9. Boston G. Diversity classes next for hospital. Atlanta J Constitution. October 2, 1999;3F.

  10. Schwartz M. Gay men and the health care system. In: Peterson KJ, ed. Health Care for Lesbians and Gay Men: Confronting Homophobia and Heterosexism. New York, NY: Harrington Park Press/Haworth Press; 1996:19–32.

    Google Scholar 

  11. Associated Press. Doctor defends refusal to treat AIDS patient. The Columbia Dispatch. June 2, 1994; 3C.

  12. Bunting SM. Sources of stigma associated with women with HIV. Adv Nurs Sci. 1996;19:64–73.

    CAS  Google Scholar 

  13. Levin BW, Driscoll JMJ, Fleischman AR. Treatment choice for infants in the neonatal intensive care unit at risk for AIDS. JAMA. 1991;265:2976–81.

    Article  PubMed  CAS  Google Scholar 

  14. Kelly JA St., Lawrence JS, Smith SJ, Hood HV, Cook DJ. Stigmatization of AIDS patients by physicians. Am J Public Health. 1987;77:789–91.

    PubMed  CAS  Google Scholar 

  15. Kelly JA St., Lawrence JS, Smith SJ, Hood HV, Cook DJ. Medical students’ attitudes toward AIDS and homosexual patients. J Med Educ. 1987;62:549–56.

    PubMed  CAS  Google Scholar 

  16. Kelly JA St., Lawrence JS, Hood HV, Smith SJ, Cook DJ. Nurses’ attitudes towards AIDS. J Contin Educ Nurs. 1988;19:78–83.

    PubMed  CAS  Google Scholar 

  17. Forrester DA, Murphy PA. Nurses’ attitudes toward patients with AIDS and AIDS-related risk factors. J Adv Nurs. 1992;17:1260–6.

    Article  PubMed  CAS  Google Scholar 

  18. Hayward RA, Shapiro MF. A national study of AIDS and residency training: experiences, concerns, and consequences. Ann Intern Med. 1991;114:23–32.

    PubMed  CAS  Google Scholar 

  19. Bennett ME, Weyant RJ, Wallisch JM, Green G. Dentists’ attitudes toward the treatment of HIV-positive patients. J Am Dent Assoc. 1995;126:509–14.

    PubMed  CAS  Google Scholar 

  20. Feldmann TB, Bell RA, Stephenson JJ, Purifoy FE. Attitudes of medical school faculty and students toward acquired immunodeficiency syndrome. Acad Med. 1990;65:464–6.

    Article  PubMed  CAS  Google Scholar 

  21. Gerbert B, Sumser J, Chamberlin K, Maguire BT, Greenblatt RM, McMaster JR. Dental care experience of HIV-positive patients. J Am Dent Assoc. 1989;119:601–3.

    PubMed  CAS  Google Scholar 

  22. Gemson DH, Colombotos J, Elinson J, Fordyce EJ, Hynes M, Stoneburner R. Acquired immunodeficiency syndrome prevention. Knowledge, attitudes, and practices of primary care physicians. Arch Intern Med. 1991;151:1102–8.

    Article  PubMed  CAS  Google Scholar 

  23. D’Augelli AR. AIDS fears and homophobia among rural nursing personnel. AIDS Educ Prev. 1989;1:277–84.

    PubMed  CAS  Google Scholar 

  24. Sowell RL, Moneyham L, Aranda-Naranjo B. The care of women with AIDS: special needs and considerations. Nurs Clin North Am. 1999;34:179–99.

    PubMed  CAS  Google Scholar 

  25. Santiago LE. Oral testimonies: the other face of the HIV story. P R Health Sci J. 1998;17:375–80.

    PubMed  CAS  Google Scholar 

  26. Greene VA, Chu SY, Diaz T, Schable B. Oral health problems and use of dental services among HIV-infected adults. Supplement to HIV/AIDS surveillance project group. J Am Dent Assoc. 1997;128:1417–22.

    PubMed  CAS  Google Scholar 

  27. Burris S. Dental discrimination against the HIV-infected: empirical data, law and public policy. Yale J Regul. 1996;13:1–104.

    Google Scholar 

  28. Bragdon v Sidney Abbott: 118 S. Ct. 2196; 1998.

  29. Americans with Disabilities Act of 1990.

  30. Burke BP, White JC. Wellbeing of gay, lesbian, and bisexual doctors. BMJ. 2001;322:422–5.

    Article  PubMed  CAS  Google Scholar 

  31. Capitanio JP, Herek GM. AIDS-related stigma and attitudes toward injecting drug users among black and white Americans. Am Behav Sci. 1999;42:1148–61.

    Google Scholar 

  32. Mays VM, Cochran SD. Mental health correlates of perceived discrimination among lesbian, gay and bisexual adults in the United States. Am J Public Health. 2001;91:1869–76.

    PubMed  CAS  Google Scholar 

  33. Weiner B. AIDS from an attributional perspective. In: Reeder GD, ed. The Social Psychology of HIV Infection. Hillsdale, NJ: Lawrence Erlbaum Associates; 1993:287–302.

    Google Scholar 

  34. Centers for Disease Control and Prevention. HIV/AIDS—United States, 1981–2000. MMWR. 2001;50:429–56.

    Google Scholar 

  35. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report, 2003, Vol. 15. Atlanta, Ga: US Department of Health and Human Services, Centers for Disease Control and Prevention; 2004: Also available at: http://www.cdc.gov/hiv/stats/hasrlink.htm.

    Google Scholar 

  36. Krieger N, Sidney S. Racial discrimination and blood pressure: the CARDIA study of young Black and White adults. Am J Public Health. 1996;86:1370–8.

    PubMed  CAS  Google Scholar 

  37. Ferguson JA, Weinberger M, Westmoreland GR, et al. Racial disparity in cardiac decision making: results from patient focus groups. Arch Intern Med. 1998;158:1450–3.

    Article  PubMed  CAS  Google Scholar 

  38. Smedley BD, Stitch AY, Nelson AR. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: Institute of Medicine; 2002.

    Google Scholar 

  39. Kressin NR, Petersen LA. Racial differences in the use of invasive cardiovascular procedures: review of the literature and prescription for future research. Ann Intern Med. 2001;135:352–66.

    PubMed  CAS  Google Scholar 

  40. Bird ST, Bogart LM. Perceived race-based and socioeconomic status (SES)-based discrimination in interactions with health care providers. Ethnic Dis. 2001;11:554–63.

    CAS  Google Scholar 

  41. Krieger N. Racial and gender discrimination: risk factors for high blood pressure? Soc Sci Med. 1990;30:1273–81.

    Article  PubMed  CAS  Google Scholar 

  42. Lillie-Blanton M, Brodie M, Rowland D, Altman D, McIntosh M. Race, ethnicity, and the health care system: public perceptions and experiences. Med Care Res Rev. 2000;1:218–35.

    Article  Google Scholar 

  43. Ren XS, Amick BC, Williams DR. Racial/ethnic disparities in health: the interplay between discrimination and socioeconomic status. Ethnic Dis. 1999;9:151–65.

    CAS  Google Scholar 

  44. Bird ST, Bogart LM, Delahanty DL. Health-related correlates of perceived discrimination in HIV care. AIDS Patient Care STDS. 2004;18:19–26.

    Article  PubMed  Google Scholar 

  45. Charbonneau A, Maheux B, Baeland F. Do people with HIV/AIDS disclose their HIV-positivity to dentists? AIDS Care. 1999;11:61–70.

    Article  PubMed  CAS  Google Scholar 

  46. McCarthy GM, Haji FS, Mackie ID. HIV-infected patients and dental care: nondisclosure of HIV status and rejection for treatment. Oral Surg Oral Med Oral Pathol Oral Radiol Endod. 1995;80:655–9.

    Article  PubMed  CAS  Google Scholar 

  47. Williams DR, Neighbors HW, Jackson JS. Racial/ethnic discrimination and health: findings from community studies. Am J Public Health. 2003;93:200–8.

    PubMed  Google Scholar 

  48. Cohen MA. Biopsychosocial approach to the human immunodeficiency virus epidemic. A clinician’s primer. Gen Hosp Psychiatr. 1990;12:98–123.

    Article  CAS  Google Scholar 

  49. Alonzo AA, Reynolds NR. Stigma, HIV and AIDS: an exploration and elaboration of a stigma trajectory. Soc Sci Med. 1995;41:303–15.

    Article  PubMed  CAS  Google Scholar 

  50. Kessler RC, Mickelson KD, Williams DR. The prevalence. distribution. and mental health correlates of perceived discrimination in the United States. J Health Soc Behav. 1999;40:208–30.

    Article  PubMed  CAS  Google Scholar 

  51. Sellers RM, Shelton JN. The role of racial identity in perceived racial discrimination. J Pers Soc Psychol. 2003;84:1079–92.

    Article  PubMed  Google Scholar 

  52. 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. 1998;339:1897–904.

    Article  PubMed  CAS  Google Scholar 

  53. Frankel MR, Shapiro MF, Duan N, et al. National probability samples in studies of low-prevalence diseases. Part II: designing and implementing the HIV cost and services utilization study sample. Health Serv Res. 1999;34(5, Part I):969–93.

    PubMed  CAS  Google Scholar 

  54. Lam NSN, Liu KB. Use of space-filling curves in generating a national rural sampling frame for HIV/AIDS research. Prof. Geogr. 1996;48:312–32.

    Article  Google Scholar 

  55. Berry SH, Brown JA, Allen C, Keesey J, Allen J, Amidon T. HCSUS Baseline Patient Questionnaire Documentation. Santa Monica, Calif: RAND; 1998.

    Google Scholar 

  56. Jacoby A. Felt versus enacted stigma: a concept revisited. Soc Sci Med. 1994;38:269–74.

    Article  PubMed  CAS  Google Scholar 

  57. Cunningham WE, Burton TM, Hawes-Dawson J, Kington RS, Hays RD. Use of relevancy ratings by target respondents to develop health-related quality of life measures: an example with African-American elderly. Qual Life Res. 2000;8:749–68.

    Article  Google Scholar 

  58. Jones JM. Prejudice and Racism. Reading, Mass: Addison-Wesley Pub. Co.; 1972.

    Google Scholar 

  59. Cunningham WE, Hays RD, Williams KW, Beck KC, Dixon WJ, Shapiro MF. Access to medical care and health-related quality of life for low-income persons with symptomatic human immunodeficiency virus. Med Care. 1995;33:739–54.

    Article  PubMed  CAS  Google Scholar 

  60. Cunningham WE, Andersen RM, Katz MH, et al. The impact of competing needs for basic subsistence on access to medical care for persons with HIV receiving care in the United States. Med Care. 1999;37:1270–81.

    Article  PubMed  CAS  Google Scholar 

  61. Cleary PD, Fahs MC, McMullen W, et al. Using patient reports to assess hospital treatment of persons with AIDS: a pilot study. AIDS Care. 1992;4:325–32.

    PubMed  CAS  Google Scholar 

  62. Cleary PD, Edgman-Levitan S, McMullen W. A national survey of hospital patients: the relationship between reported problems with care and patient evaluations. Qual Rev Bull. 1993;18:53–9.

    Google Scholar 

  63. Kao AC, Green DC, Zaslavsky AM, Koplan JP, Cleary PD. The relationship between method of physician payment and patient trust. JAMA. 1998;280:1708–14.

    Article  PubMed  CAS  Google Scholar 

  64. Cunningham WE, Rana HM, Shapiro MF, Hays RD. Reliability and validity of self-report CD4 counts-in persons hospitalized with HIV disease. J Clin Epidemiol. 1997;50:829–35.

    Article  PubMed  CAS  Google Scholar 

  65. Brick JM, Kalton G. Handling missing data in survey research. Stat Methods Med Res. 1966;5:215–38.

    Google Scholar 

  66. Duan N, McCaffrey DF, Frankel MR, et al. HCSUS Baseline Methods Technical Report. Santa Monica, Calif: RAND; 1999.

    Google Scholar 

  67. Kish L, Frankel MR. Inference from complex samples. J R Stat Soc B. 1974;36:1–37.

    Google Scholar 

  68. Wilson IB, Landon BE, Ding L, et al. A national study of the relationship of care site HIV specialization to early adoption of highly active antiretroviral therapy. Med Care. 2005;43:12–20.

    PubMed  Google Scholar 

  69. Essed P. Understanding Everyday Racism: An Interdisciplinary Theory. Newbury Park: Sage Publications; 1991.

    Google Scholar 

  70. Feagin JR, Sikes MP. Living With Racism: The Black Middle-Class Experience. Boston, Mass: Beacon Press; 1994.

    Google Scholar 

  71. Taylor DM, Wright SC, Porter LE. Dimensions of perceived discrimination: the personal/group discrimination discrepancy. In: Olson JM, ed. The Psychology of Prejudice: The Ontario Symposium, Vol 7. Hillsdale, NJ: Lawrence Erlbaum Associates Inc.; 1994:233–55.

    Google Scholar 

  72. Lee J, Gehlbach S, Hosmer DW, Reti M, Baker CS. Medicare treatment differences for blacks and whites. Med Care. 1997;35:1173–89.

    Article  PubMed  CAS  Google Scholar 

  73. Schneider EC, Cleary PD, Zaslavsky AM, Epstein AM. Racial disparity in influenza vaccination: does managed care narrow the gap between African Americans and whites? JAMA. 2001;286:1455–60.

    Article  PubMed  CAS  Google Scholar 

  74. Hooper EM, Comstock LM, Goodwin JM, Goodwin JS. Patient characteristics that influence physician behavior. Med Care. 1982;20:630–8.

    Article  PubMed  CAS  Google Scholar 

  75. van Ryn M, Fu SS. Paved with good intentions: do public health and human service providers contribute to racial/ethnic disparities in health? Am J Public Health. 2003;93:248–55.

    Article  PubMed  Google Scholar 

  76. Geiger HJ. Racial and ethnic disparities in diagnosis and treatment: a review of the evidence and a consideration of causes. In: Nelson AR, ed. Unequal Treatment: Confirming Racial and Ethnic Disparities in Health Care. Washington, DC: Institute of Medicine: 2002.

    Google Scholar 

  77. Marques JM, Yzerbyt VY, Leyens JP. The “Black Sheep Effects”: extremity of judgments towards ingroup members as a function of group identification. Eur J Soc Psychol. 1988;18:1–16.

    Article  Google Scholar 

  78. Marques JM, Abrams D, Serodio RG. Being better by being right: subjective group dynamics and derogation of in-group deviants when generic norms are undermined. J Pers Soc Psychol. 2001;81:436–47.

    Article  PubMed  CAS  Google Scholar 

  79. Lerner MJ. The desire for justice and reactions to victims. In: Berkowitz L, ed. Altruism and Helping Behavior. New York, NY: Academic Press; 1970:205–29.

    Google Scholar 

  80. Kahn KL, Pearson ML, Harrison ER, et al. Health care for black and poor hospitalized Medicare patients. JAMA. 1994;271:1169–74.

    Article  PubMed  CAS  Google Scholar 

  81. Horsman JM, Sheeran P. Health care workers and HIV/AIDS: a critical review of the literature. Soc Sci Med. 1995;41:1535–67.

    Article  PubMed  CAS  Google Scholar 

  82. Passannante MR, French J, Louria DB. How much do health care providers know about AIDS? Am J Prev Med. 1993;9:6–14.

    PubMed  CAS  Google Scholar 

  83. Kaplan SH, Greenfield S, Ware JE. Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care. 1989;27(3, suppl):S110–27.

    Article  PubMed  CAS  Google Scholar 

  84. Thomson GE. Discrimination in health care. Ann Intern Med. 1997;126:910–2.

    PubMed  CAS  Google Scholar 

  85. Hadorn DC. The problem of discrimination in health care priority setting. JAMA. 1992;268:1454–9.

    Article  PubMed  CAS  Google Scholar 

  86. Gostin LO, Webber DW. HIV infection and AIDS in the public health and health care systems: the role of law and litigation. JAMA. 1998;279:1108–13.

    Article  PubMed  CAS  Google Scholar 

  87. Richter D. Not in my office: medical professionals and their refusal to treat HIV/AIDS patients. Law Psychol Rev. 1999;23:179–93.

    Google Scholar 

  88. Gallop RM, Taerk G, Lancee WJ, Coates RA, Flanning M. A randomized trial of group interventions for hospital staff caring for persons with AIDS. AIDS Care. 1992;4:177–85.

    PubMed  CAS  Google Scholar 

  89. Carroll JL. An exploration of AIDS education and teaching methods. AIDS Care. 1991;3:101–4.

    PubMed  CAS  Google Scholar 

  90. Jemmott LS, Jemmott JB, Cruz-Collins M. Predicting AIDS patient care intentions among nursing students. Nurs Res. 1992;41:172–7.

    PubMed  CAS  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Mark A. Schuster MD, PhD.

Additional information

This work was supported in part by the Agency for Health Care Policy and Research (U-01HS08578) and the Centers for Disease Control and Prevention (U48/CCU915773 and U48/DP000056). This work does not necessarily represent the opinions of the funding organizations or of the institutions with which the authors are affiliated.

The authors have no conflicts of interest to report.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Schuster, M.A., Collins, R., Cunningham, W.E. et al. Perceived discrimination in clinical care in a nationally representative sample of HIV-infected adults receiving health care. J GEN INTERN MED 20, 807–813 (2005). https://doi.org/10.1111/j.1525-1497.2005.05049.x

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Issue Date:

  • DOI: https://doi.org/10.1111/j.1525-1497.2005.05049.x

Key Words

Navigation