To assess whether HIV-negative men who have sex with men (MSM) have realistic views of the current implications of living with HIV, we compared data of 950 tested HIV-negative and 122 never-tested MSM on anticipated consequences of an HIV-infection to the actual experiences of 438 MSM living with HIV. Data were collected with a self-reported, web-based survey conducted between May–June 2019 in the Netherlands. Results indicated that, compared to HIV-positive MSM, HIV-negative MSM significantly overestimated 95% (37/39) of items assessing HIV-related burden. Never-tested participants overestimated 85% (33/39) of items. Overestimation in never-tested MSM was modified with increasing age and having HIV-positive friends/relatives. The high level of overestimation suggests the ongoing need to correct for misperceptions, as this could help reduce stigma towards those living with HIV and diminish fear of an HIV-diagnosis. The latter might be important to improve testing uptake in older never-tested MSM with outdated views on HIV.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Tax calculation will be finalised during checkout.
UNAIDS. Global HIV & AIDS statistics - 2019 fact sheet. Available online at: https://www.unaids.org/en/resources/fact-sheet. Accessed 21 December 2021.
Stichting HIV Monitoring the Netherlands. Annual Report 2020. Available online at www.hiv-monitoring.nl.
Flowers P, Davis MM, Larkin M, Church S, Marriott C. Understanding the impact of HIV diagnosis amongst gay men in Scotland: an interpretative phenomenological analysis. Psychol Health. 2011;26(10):1378–91.
Moskowitz JT, Wrubel J, Hult JR, Maurer S, Acree M. Illness appraisals and depression in the first year after HIV diagnosis. PLoS ONE. 2013;8(10):e78904.
Rai T, Bruton J, Day S, Ward H. From activism to secrecy: Contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014. Health Expect. 2018;21(6):1134–41.
Siegel K, Lekas HM. AIDS as a chronic illness: psychosocial implications. AIDS. 2002;16(Suppl 4):S69-76.
Van Bilsen WPH, Zimmermann HML, Boyd A, Davidovich U. Burden of living with HIV among men who have sex with men: a mixed-methods study. Lancet HIV. 2020;7(12):e835–84. https://doi.org/10.1016/S2352-3018(20)30197-1.
Gamarel KE, Nelson KM, Stephenson R, Santiago Rivera OJ, Chiaramonte D, Miller RL, et al. Anticipated HIV stigma and delays in regular HIV testing behaviors among sexually-active young gay, bisexual, and other men who have sex with men and transgender women. AIDS Behav. 2018;22(2):522–30.
Golub SA, Gamarel KE. The impact of anticipated HIV stigma on delays in HIV testing behaviors: findings from a community-based sample of men who have sex with men and transgender women in New York City. AIDS Patient Care STDS. 2013;27(11):621–7.
Fuster-RuizdeApodaca MJ, Laguia A, Molero F, Toledo J, Arrillaga A, Jaen A. Psychosocial determinants of HIV testing across stages of change in Spanish population: a cross-sectional national survey. BMC Public Health. 2017;17(1):234.
Schnall R, Rojas M, Travers J. Understanding HIV testing behaviors of minority adolescents: a health behavior model analysis. J Assoc Nurses AIDS Care. 2015;26(3):246–58.
Rosenstock IM, Strecher VJ, Becker MH. Social learning theory and the health belief model. Health Educ Q. 1988;15(2):175–83.
Leventhal H, Nerenz D, Steele DJ. Illness representations and coping with health threats handbook of psychology and health. 4th ed. Hillsdale: Lawrence Erlbaum Associates; 1984. p. 219–52.
van Sighem AI, Wit FWNM, Boyd A, Smit C, Matser A, Reiss PM, Report, . Human Immunodeficiency Virus (HIV) Infection in the Netherlands. Amsterdam: Stichting HIV Monitoring; 2019. p. 2019.
Earnshaw VA, Smith LR, Chaudoir SR, Lee IC, Copenhaver MM. Stereotypes about people living with HIV: implications for perceptions of HIV risk and testing frequency among at-risk populations. AIDS Educ Prev. 2012;24(6):574–81.
Kalichman SC, Simbayi LC. HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in Cape Town. South Africa Sex Transm Infect. 2003;79(6):442–7.
Li X, Lu H, Ma X, Sun Y, He X, Li C, et al. HIV/AIDS-related stigmatizing and discriminatory attitudes and recent HIV testing among men who have sex with men in Beijing. AIDS Behav. 2012;16(3):499–507.
Herek GM, Mitnick L, Burris S, Chesney M, Devine P, Fullilove MT, et al. Workshop report: AIDS and stigma: a conceptual framework and research agenda. AIDS Public Policy J. 1998;13(1):36–47.
Andersson GZ, Reinius M, Eriksson LE, Svedhem V, Esfahani FM, Deuba K, et al. Stigma reduction interventions in people living with HIV to improve health-related quality of life. Lancet HIV. 2020;7(2):e129–40.
Mahajan AP, Sayles JN, Patel VA, Remien RH, Sawires SR, Ortiz DJ, et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS. 2008;22(Suppl 2):S67-79.
Stangl AL, Lloyd JK, Brady LM, Holland CE, Baral S. A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come? J Int AIDS Soc. 2013;16(3 Suppl 2):18734.
Wilson TD, Gilbert DT. Affective Forecasting. Adv Exp. Soc Psychol. 2003;35:345–411.
Nachega JB, Lehman DA, Hlatshwayo D, Mothopeng R, Chaisson RE, Karstaedt AS. HIV/AIDS and antiretroviral treatment knowledge, attitudes, beliefs, and practices in HIV-infected adults in Soweto, South Africa. J Acquir Immune Defic Syndr. 2005;38(2):196–201.
Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. 2003;57(1):13–24.
Wolfe WR, Weiser SD, Bangsberg DR, Thior I, Makhema JM, Dickinson DB, et al. Effects of HIV-related stigma among an early sample of patients receiving antiretroviral therapy in Botswana. AIDS Care. 2006;18(8):931–3.
Logie C, Gadalla TM. Meta-analysis of health and demographic correlates of stigma towards people living with HIV. AIDS Care. 2009;21(6):742–53.
Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS Behav. 2009;13(6):1160–77.
Bedert M. Reasons for late presentation among older MSM in Amsterdam. 12th Netherlands Conference on HIV Pathogenesis, Epidemiology, Prevention and Treatment (NCHIV) Amsterdam 2019.
Ellis EM, Elwyn G, Nelson WL, Scalia P, Kobrin SC, Ferrer RA. Interventions to engage affective forecasting in health-related decision making: a meta-analysis. Ann Behav Med. 2018;52(2):157–74.
de Wit JB, Das E, Vet R. What works best: objective statistics or a personal testimonial? An assessment of the persuasive effects of different types of message evidence on risk perception. Health Psychol. 2008;27(1):110–5.
We thank all our participants for filling out the online survey. We further like to thank the following persons for their invaluable support to this study: Wim Zuilhof, Arjan van Bijnen, Tomas Derckx, Renee Finkenflügel, Ertan Ersan, Dominique Loomans, and Fred Verdult. Furthermore, we thank all of those who contributed to the H-TEAM (see Supplement 5).
This study was funded by the HIV Transmission Elimination Amsterdam Initiative (H-TEAM).
Conflict of interest
A.B. reports grants from ANRS and grants from Sidaction, outside the submitted work. UD reports obtaining unrestricted research grants and speaker’s fees from Gilead Sciences, paid to his institute (Public Health Service of Amsterdam). All other authors declare no competing interests.
The study was reviewed by the ethics board of the Academic Medical Centre, Amsterdam, the Netherlands and we received an exemption from further extended protocol review. Questionnaire participation was voluntary and anonymous.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Below is the link to the electronic supplementary material.
About this article
Cite this article
Zimmermann, H.M.L., van Bilsen, W.P.H., Boyd, A. et al. The Burden of Living With HIV is Mostly Overestimated by HIV-Negative and Never-Tested Men Who Have Sex With Men. AIDS Behav (2021). https://doi.org/10.1007/s10461-021-03281-1
- Men who have sex with men
- Social stigma
- Quality of life