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Medical mistrust as a barrier to HIV prevention and care

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Abstract

Medical mistrust is fueled by conspiracy theories and histories of healthcare systems abuse and is a known determinant of health outcomes in minority populations. Plagued by multiple and pervasive conspiracy theories, HIV/AIDS has proven to be particularly hampered by medical mistrust. The current paper systematically reviews the literature on medical mistrust among people at risk for or living with HIV infection. The bulk of evidence from 17 studies supports medical mistrust as a barrier to HIV testing, engagement in prevention and care services, treatment uptake and adherence, and clinical outcomes. While findings mostly indicate that medical mistrust is a barrier to HIV prevention and care, some studies report null results and others suggest that medical mistrust may actually improve some HIV-related outcomes. Additionally, most of the reviewed literature was cross-sectional. Thus longitudinal, theory-driven research is needed to reconcile inconsistent findings and determine long term outcomes of medical mistrust. Interventions may then be developed to reduce the negative consequences associated with medical mistrust.

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References

  • Agnarson, A. M., Masanja, H., Ekström, A. M., Eriksen, J., Tomson, G., & Thorson, A. (2010). Challenges to ART scale-up in a rural district in Tanzania: Stigma and distrust among Tanzanian health care workers, people living with HIV and community members. Tropical Medicine & International Health, 15(9), 1000–1007. https://doi.org/10.1111/j.1365-3156.2010.02587.x.

    Article  Google Scholar 

  • Benkert, R., Cuevas, Adolfo, T., Hayley, S., Dove-Meadows, E., & Knuckles, D. (2019). Ubiquitous yet unclear: A systematic review of Medical Mistrust. Behavioral Medicine (Washington D C), 45(2), 86–101. https://doi.org/10.1080/08964289.2019.1588220.

    Article  PubMed  Google Scholar 

  • Bertakis, K. D. (2009). The influence of gender on the doctor–patient interaction. Patient education and counseling, 76(3), 356–360.

    Article  PubMed  Google Scholar 

  • Best, A. L., Fletcher, F. E., Kadono, M., & Warren, R. C. (2021). Institutional distrust among African Americans and Building trustworthiness in the COVID-19 response: Implications for ethical Public Health Practice. Journal of Health Care for the Poor and Underserved, 32(1), 90–98. https://doi.org/10.1353/hpu.2021.0010.

    Article  PubMed  PubMed Central  Google Scholar 

  • Bogart, L. M., Galvan, F. H., Wagner, G. J., & Klein, D. J. (2011). Longitudinal association of HIV conspiracy beliefs with sexual risk among black males living with HIV. AIDS and Behavior, 15(6), 1180–1186.

    Article  PubMed  PubMed Central  Google Scholar 

  • Bogart, L. M., Ransome, Yusuf, A., Higgins-Biddle, W., Molly, & Ojikutu, B. O. (2019). HIV-Related Medical Mistrust, HIV Testing, and HIV Risk in the National Survey on HIV in the Black Community. Behavioral Medicine (Washington D C), 45(2), 134–142. https://doi.org/10.1080/08964289.2019.1585324.

    Article  PubMed  Google Scholar 

  • Bogart, L. M., & Thorburn, S. (2005). Are HIV/AIDS conspiracy beliefs a barrier to HIV prevention among African Americans? JAIDS Journal of Acquired Immune Deficiency Syndromes, 38(2), 213–218.

  • Bogart, L. M., Wagner, Glenn, Galvan, Frank, H., & Banks, D. (2010). Conspiracy beliefs about HIV are related to antiretroviral treatment nonadherence among african american men with HIV. Journal of Acquired Immune Deficiency Syndromes (1999), 53(5), 648–655. https://doi.org/10.1097/QAI.0b013e3181c57dbc.

    Article  CAS  PubMed  Google Scholar 

  • Bogart, L. M., Wagner, Glenn, J., Green, H. D., Mutchler, Matt, G., Klein, D. J., McDavitt, Bryce, L., Sean, J., & Hilliard, C. L. (2016). Medical mistrust among social network members may contribute to antiretroviral treatment nonadherence in African Americans living with HIV. Social Science & Medicine (1982), 164, 133–140. https://doi.org/10.1016/j.socscimed.2016.03.028.

    Article  Google Scholar 

  • Brincks, A. M., Shiu-Yee, K., Metsch, L. R., del Rio, Carlos, Schwartz, R. P., Jacobs, Petra, Osorio, Georgina, Sorensen, James L, & Feaster, D. J. (2019). Physician Mistrust, Medical System Mistrust, and Perceived Discrimination: Associations with HIV Care Engagement and Viral Load. AIDS and Behavior, 23(10), 2859–2869. https://doi.org/10.1007/s10461-019-02464-1

  • Bristol, S., Kostelec, T., & MacDonald, R. (2018). Improving Emergency Health Care Workers’ knowledge, competency, and Attitudes toward Lesbian, Gay, Bisexual, and Transgender Patients through Interdisciplinary Cultural Competency Training. Journal of Emergency Nursing, 44(6), 632–639. https://doi.org/10.1016/j.jen.2018.03.013.

    Article  PubMed  Google Scholar 

  • Cahill, S., Taylor, S., Wade, Elsesser, S. A., Mena, Leandro, Hickson, D. M., & Mayer, K. H. (2017). Stigma, medical mistrust, and perceived racism may affect PrEP awareness and uptake in black compared to white gay and bisexual men in Jackson, Mississippi and Boston, Massachusetts. Aids Care, 29(11), 1351–1358. https://doi.org/10.1080/09540121.2017.1300633.

    Article  PubMed  PubMed Central  Google Scholar 

  • Cuevas, Adolfo, G., O’Brien, K., & Saha, S. (2019). Can patient-centered communication reduce the Effects of Medical Mistrust on Patients’ decision making? Health Psychology, 38(4), 325–333. https://doi.org/10.1037/hea0000721.

    Article  CAS  PubMed  Google Scholar 

  • Dale, S. K., Bogart, L. M., Wagner, Glenn, J., Galvan, Frank, H., & Klein, D. J. (2016). Medical mistrust is related to lower longitudinal medication adherence among african-american males with HIV. Journal of Health Psychology, 21(7), 1311–1321. https://doi.org/10.1177/1359105314551950.

    Article  PubMed  Google Scholar 

  • Daniels, J., Struthers, H., Maleke, Kabelo, Lane, T., McIntyre, J., & Coates, T. (2019). My tablets are on Top of the Fridge’: The Roles of Relationship Desire and Medical Mistrust in ART Adherence for HIV-Positive MSM and Transgender Women Living in Rural South Africa. AIDS and Behavior, 23(10), 2849–2858. https://doi.org/10.1007/s10461-019-02628-z.

    Article  PubMed  Google Scholar 

  • Dong, L., Bogart, L. M., Mutchler, M. G., Lawrence, S. J., Klein, D. J., Gizaw, M., & Wagner, G. J. (2022). Perceived discrimination, adherence to antiretroviral therapy, and HIV care engagement among HIV-positive black adults: the mediating role of medical mistrust. Journal of Behavioral Medicine, 45(2), 285–296. https://doi.org/10.1007/s10865-021-00277-z

  • Downes, M. J., Brennan, M. L., Williams, H. C., & Dean, R. S. (2016). Development of a critical appraisal tool to assess the quality of cross-sectional studies (AXIS). BMJ open, 6(12), e011458.

  • Eaton, L. A., Driffin, D. D., Kegler, C., Smith, H., Conway-Washington, C., White, D., & Cherry, C. (2015). The role of stigma and medical mistrust in the routine health care engagement of black men who have sex with men. American Journal of Public Health (1971), 105(2), e75–e82. https://doi.org/10.2105/AJPH.2014.302322.

    Article  Google Scholar 

  • Epner, D. E., & Baile, W. F. (2012). Patient-centered care: The key to cultural competence. Annals of Oncology, 23, 33–iii42. https://doi.org/10.1093/annonc/mds086.

    Article  PubMed  Google Scholar 

  • Fiscella, K., Meldrum, S., Franks, P., Shields, C. G., Duberstein, P., McDaniel, S. H., & Epstein, R. M. (2004). Patient Trust: Is it related to patient-centered behavior of Primary Care Physicians? Medical Care, 42(11), 1049–1055. https://doi.org/10.1097/00005650-200411000-00003.

    Article  PubMed  Google Scholar 

  • Freburger, J. K., Callahan, L. F., Currey, S. S., & Anderson, L. A. (2003). Use of the Trust in Physician Scale in patients with rheumatic disease: Psychometric properties and correlates of trust in the rheumatologist. Arthritis Care & Research: Official Journal of the American College of Rheumatology, 49(1), 51–58.

  • Galvan, F. H., Bogart, Laura, M., Klein, D. J., Wagner, Glenn, J., & Chen, Y. T. (2017). Medical mistrust as a key mediator in the association between perceived discrimination and adherence to antiretroviral therapy among HIV-positive latino men. Journal of Behavioral Medicine, 40(5), 784–793. https://doi.org/10.1007/s10865-017-9843-1.

    Article  PubMed  PubMed Central  Google Scholar 

  • Gaston, G. B., Gaston, Gina, B., Alleyne-Green, B., & Alleyne-Green, B. (2013). The impact of African Americans’ beliefs about HIV Medical Care on Treatment Adherence: A systematic review and recommendations for interventions. AIDS and Behavior, 17(1), 31–40. https://doi.org/10.1007/s10461-012-0323-x.

    Article  PubMed  Google Scholar 

  • Horne, R., Weinman, J., & Hankins, M. (1999). The beliefs about medicines questionnaire: the development and evaluation of a new method for assessing the cognitive representation of medication. Psychology and Health, 14(1), 1–24.

  • Hutchinson, A. B., Corbie-Smith, G., Thomas, S. B., Mohanan, S., & Del Rio, C. (2004). Understanding the patient’s perspective on rapid and routine HIV testing in an inner-city urgent care center. AIDS Education and prevention, 16(2), 101–114.

    Article  PubMed  Google Scholar 

  • Jaiswal, J., & Halkitis, P. N. (2019). Towards a more inclusive and dynamic understanding of Medical Mistrust informed by Science. Behavioral Medicine (Washington D C), 45(2), 79–85. https://doi.org/10.1080/08964289.2019.1619511.

    Article  PubMed  Google Scholar 

  • Kalichman, S. C., Eaton, Lisa, Kalichman, M. O., Grebler, Tama, Merely, C., & Welles, B. (2016). Race-based medical mistrust, medication beliefs and HIV treatment adherence: Test of a mediation model in people living with HIV/AIDS. Journal of Behavioral Medicine, 39(6), 1056–1064. https://doi.org/10.1007/s10865-016-9767-1.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kalichman, S. C., Eaton, Lisa, Kalichman, Moira, O., & Cherry, C. (2017). Medication beliefs mediate the association between medical mistrust and antiretroviral adherence among african Americans living with HIV/AIDS. Journal of Health Psychology, 22(3), 269–279. https://doi.org/10.1177/1359105315600239.

    Article  PubMed  Google Scholar 

  • Kimball, D., Rivera, D., Gonzales, & Blashill, A. J. (2020). Medical mistrust and the PrEP Cascade among latino sexual minority men. AIDS and Behavior, 24(12), 3456–3461. https://doi.org/10.1007/s10461-020-02916-z.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kinlock, B. L., Parker, L. J., Bowie, J. V., Howard, D. L., LaVeist, T. A., & Thorpe, R. J. Jr. (2017). High levels of medical mistrust are associated with low quality of life among black and white men with prostate cancer.

  • Kutnick, A. H., Leonard, N. R., & Gwadz, M. V. (2019). Like i have no choice”: A qualitative exploration of HIV diagnosis and medical care experiences while incarcerated and their effects. Behavioral Medicine, 45(2), 153–165.

    Article  PubMed  Google Scholar 

  • LaVeist, T. A., Isaac, Lydia, A., & Williams, K. P. (2009). Mistrust of Health Care Organizations is Associated with underutilization of Health Services. Health Services Research, 44(6), 2093–2105. https://doi.org/10.1111/j.1475-6773.2009.01017.x.

    Article  PubMed  PubMed Central  Google Scholar 

  • LaVeist, T. A., Nickerson, Kim, J., & Bowie, J. V. (2000). Attitudes about Racism, Medical Mistrust, and satisfaction with care among african american and white Cardiac patients. Medical Care Research and Review, 57(1_suppl), 146–161. https://doi.org/10.1177/1077558700057001S07.

    Article  PubMed  Google Scholar 

  • Malebranche, D. J., Peterson, J. L., Fullilove, R. E., & Stackhouse, R. W. (2004). Race and sexual identity: perceptions about medical culture and healthcare among Black men who have sex with men. Journal of the National Medical Association, 96(1), 97.

  • Ojikutu, B. O., Amutah-Onukagha, N., Mahoney, T. F., Tibbitt, C., Dale, S. D., Mayer, K. H., & Bogart, L. M. (2020). HIV-Related mistrust (or HIV Conspiracy Theories) and willingness to Use PrEP among Black Women in the United States. AIDS and Behavior, 24(10), 2927–2934. https://doi.org/10.1007/s10461-020-02843-z.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Pellowski, J. A., Price, Devon, M., Allen, Aerielle, M., Eaton, Lisa, A., & Kalichman, S. C. (2017). The differences between medical trust and mistrust and their respective influences on medication beliefs and ART adherence among African-Americans living with HIV. Psychology & Health, 32(9), 1127–1139. https://doi.org/10.1080/08870446.2017.1324969.

    Article  Google Scholar 

  • Quinn, K., Julia, Q. K. D. G., Dickson-Gomez, Julia, Zarwell, Meagan, Zarwell, Meagan, Pearson, Broderick, Pearson, Broderick, Lewis, Matthew, & Lewis, M. (2019). “A Gay Man and a Doctor are Just like, a Recipe for Destruction”: How Racism and Homonegativity in Healthcare Settings Influence PrEP Uptake Among Young Black MSM. AIDS and Behavior, 23(7), 1951–1963. https://doi.org/10.1007/s10461-018-2375-z

  • Ramos, S., Raquel, Warren, Rueben, Shedlin, Michele, Melkus, Gail, Kershaw, Trace, & Vorderstrasse, A. (2019). A Framework for Using eHealth Interventions to Overcome Medical Mistrust Among Sexual Minority Men of Color Living with Chronic Conditions. Behavioral Medicine (Washington, D.C.), 45(2), 166–176. https://doi.org/10.1080/08964289.2019.1570074

  • Relf, M. V., Pan, Wei, E., Ramirez, A., Catalina, Amarasekara, S., & Adimora, A. A. (2019). Discrimination, Medical Distrust, Stigma, depressive symptoms, antiretroviral medication adherence, Engagement in Care, and quality of life among women living with HIV in North Carolina: A mediated structural equation Model. Journal of Acquired Immune Deficiency Syndromes (1999), 81(3), 328–335. https://doi.org/10.1097/QAI.0000000000002033.

    Article  PubMed  Google Scholar 

  • Saha, S., Korthuis, P., Todd, C., Sharp, J. A., Victoria, L., Moore, Richard, D., & Beach, M. C. (2013). Primary care Provider Cultural competence and racial disparities in HIV Care and Outcomes. Journal of General Internal Medicine: JGIM, 28(5), 622–629. https://doi.org/10.1007/s11606-012-2298-8.

    Article  PubMed  PubMed Central  Google Scholar 

  • Shelton, R. C., Winkel, G., Davis, S. N., Roberts, N., Valdimarsdottir, H., Hall, S. J., & Thompson, H. S. (2010). Validation of the group-based medical mistrust scale among urban black men. Journal of General Internal Medicine, 25, 549–555.

  • Thom, D. H., Ribisl, K. M., Stewart, A. L., & Luke, D. A. (1999). Further validation and reliability testing of the Trust in Physician Scale. The Stanford Trust Study Physicians. Medical Care, 37(5), 510–517. https://doi.org/10.1097/00005650-199905000-00010

  • Thompson, H. S., Valdimarsdottir, H. B., Winkel, G., Jandorf, L., & Redd, W. (2004). The Group-Based Medical Mistrust Scale: Psychometric properties and association with breast cancer screening. Preventive Medicine, 38(2), 209–218.

  • Underhill, K., Morrow, K. M., Colleran, Christopher, Holcomb, R., Operario, C. S. K., Don, Galárraga, O., & Mayer, K. H. (2015). A qualitative study of Medical Mistrust, Perceived discrimination, and Risk Behavior Disclosure to Clinicians by U.S. male sex workers and other men who have sex with men: Implications for Biomedical HIV Prevention. Journal of Urban Health, 92(4), 667–686. https://doi.org/10.1007/s11524-015-9961-4.

    Article  PubMed  PubMed Central  Google Scholar 

  • Williams, D. R., & Mohammed, S. A. (2013). Racism and health I: Pathways and scientific evidence. American Behavioral Scientist, 57(8), 1152–1173.

  • Williamson, L. D., & Bigman, C. A. (2018). A systematic review of medical mistrust measures. Patient Education and Counseling, 101(10), 1786–1794. https://doi.org/10.1016/j.pec.2018.05.007.

    Article  PubMed  Google Scholar 

  • Zhang, C., McMahon, J., Leblanc, N., Braksmajer, A., Crean, H. F., & Alcena-Stiner, D. (2020). Association of Medical Mistrust and Poor Communication with HIV-Related Health Outcomes and Psychosocial Wellbeing among Heterosexual Men living with HIV. AIDS Patient Care and STDs, 34(1), 27–37. https://doi.org/10.1089/apc.2019.0200.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

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Authors and Affiliations

  1. Department of Psychological Sciences, University of Connecticut, Storrs, CT, United States

    Renee El-Krab

  2. Institute for Collaboration on Health, Intervention and Policy (InCHIP), University of Connecticut, Storrs, CT, United States

    Natalie Brousseau & Seth C. Kalichman

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  1. Renee El-Krab
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Correspondence to Renee El-Krab.

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El-Krab, R., Brousseau, N. & Kalichman, S.C. Medical mistrust as a barrier to HIV prevention and care. J Behav Med 46, 897–911 (2023). https://doi.org/10.1007/s10865-023-00417-7

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