Burden of living with HIV among men who have sex with men: a mixed-methods study

Lancet HIV. 2020 Dec;7(12):e835-e843. doi: 10.1016/S2352-3018(20)30197-1. Epub 2020 Oct 8.


Background: With biomedical developments in treatment and prevention of HIV, the implications of living with HIV are considerably more manageable. Within this context, we aimed to describe and quantify the present-day burden of living with HIV among men who have sex with men (MSM) in the Netherlands.

Methods: In this mixed-methods study, we did in-depth interviews on HIV-related burden with MSM diagnosed with HIV between 2014 and 2018. Interviewees were recruited at three HIV treatment centres and the Public Health Service of Amsterdam in the Netherlands. Using the transcripts from all interviewees, the qualitative analysis was done by two independent researchers applying an open-coding process. Results were used to generate a questionnaire measuring HIV-related burden, which was distributed via gay dating apps or sites and social media. MSM diagnosed with HIV before 2019 who completed the questionnaire were included in the quantitative analyses. Descriptive analyses were used to report burden prevalence and to explore differences in burden among MSM diagnosed at different antiretroviral therapy periods. Sociodemographic determinants of burden were explored using multinomial logistic regression.

Findings: Between May, 2018, and March, 2019, 18 of 25 MSM who consented for further contact were interviewed, after which thematic saturation was reached. The interviewees revealed that aspects related to medicalisation and emotional consequences were burdensome temporarily after diagnosis, whereas aspects related to HIV status disclosure, stigma, and the sexual and social life were mentioned to be burdensome more persistently. Between April and July, 2019, 613 MSM with HIV started the quantitative survey, of whom 438 (71%) completed the questionnaire and were included in the analyses. These 438 MSM were diagnosed with HIV between 1984 and 2018. The median time since HIV diagnosis was 8 years (IQR 4-13). In total, 135 (31%) of 438 online respondents reported that living with HIV was generally experienced as burdensome and 361 (82%) would be relieved if HIV could be cured. Compared with a low level of burden, a moderate level of burden was associated with having another chronic condition (p=0·0030), and a high level of burden was associated with a more recent diagnosis (p=0·0060) and not knowing other individuals with HIV (p=0·0020). Disclosure dilemmas were reported to be the most burdensome, resulting in difficulties initiating sex (122 [32%] of 378 respondents) and establishing relationships (85 [41%] of 207 respondents). The most prevalent emotional consequences were shame (112 [26%] of 438 respondents) and stress (80 [18%] of 438 respondents). Disclosure and taking antiretroviral therapy in the presence of others were experienced as more burdensome among those diagnosed after 2005 than among those diagnosed in or before 2005.

Interpretation: Our findings highlight that despite medical advancements, further stigma reduction programmes and adapted psychosocial support for specific profiles of MSM living with HIV are needed.

Funding: HIV Transmission Elimination Amsterdam Initiative.

MeSH terms

  • Adult
  • Cost of Illness*
  • Cross-Sectional Studies
  • HIV Infections / epidemiology*
  • HIV Infections / virology
  • Homosexuality, Male*
  • Humans
  • Male
  • Middle Aged
  • Netherlands / epidemiology
  • Public Health Surveillance
  • Sexual Behavior
  • Socioeconomic Factors
  • Surveys and Questionnaires