Introduction

The perspective of HIV has improved dramatically over the years, changing from a fatal disease to a manageable chronic condition1. This paradigm shift was driven by the introduction and ongoing development of antiretroviral therapy (ART) and improved treatment strategies2. Furthermore, the use of pre-exposure prophylaxis (PrEP) and undetectable equals untransmittable (U = U) revolutionized biomedical interventions for HIV prevention3,4,5. Despite these improvements, there is a need for continued attention to the experienced influence of HIV on the quality of life (QoL) of people with HIV (PHIV) and key populations who are living without but vulnerable to HIV (e.g., men who have sex with men (MSM) and ethnic minorities). Evidence suggests that both groups currently continue to experience a multifaceted and predominant influence of HIV on their QoL6. This influence may have resulted in lower experienced QoL among PHIV and key populations compared to the general population4,6,7. Several studies demonstrated a predominant influence or burden of HIV and of ART on the QoL of PHIV and key populations in over 25 countries, including the Netherlands, the USA, and Australia3,5,7,8,9. For example, being dependent on ART was shown to be a cause for emotional and physical discomfort among PHIV3,5,7,8.

Removing the multifaceted and predominant influence of HIV on the lives of PHIV and key populations is desired and strived for by clinicians, biomedical researchers, and patient organizations6,10,11,12,13. Most research has focused on improving the clinical management of HIV (i.e., diagnosis, treatment, viral suppression etc.) to reduce this predominant influence3,5,7,8,9. Several studies underlined that shifting the focus beyond the clinical management of HIV will ultimately improve the QoL4,6,7,13,14. Some studies addressed the multifaceted influence beyond exploring the experienced negative predominant influence of HIV15,16,17,18,19,20,21. For example, Herron et al.16 reported in a review of qualitative literature that women with HIV experienced stigma, socio-structural barriers to healthcare and support, and negative encounters with health professionals due to HIV. However, they also found that women with HIV experienced positive personal growth due to HIV. We aimed to investigate the influence of HIV on the QoL in all its breadth including both the positive and negative influence of HIV that have received little attention in the literature. In addition, few studies addressed the influence of HIV among key populations who are vulnerable to but are not living with HIV. Koester et al.22 demonstrated that PrEP reduced the fear of HIV acquisition among key populations. However, to the best of our knowledge, all aspects of the experienced influence of HIV on the QoL of key populations specifically have not been studied. The inclusion of key populations, when investigating this influence, is important to direct the research community towards prevention interventions that fit the needs of people vulnerable to HIV4,6,7,10,11,12,13,14,23.

Our qualitative study aims to explore the experienced influence of HIV on the QoL of PHIV and key populations vulnerable to HIV in the Netherlands. In the context of this study, key populations are people injecting drugs and MSM living without HIV. This study reports findings from the secondary analysis of data collected in a research project that explored the current influence of HIV on the QoL and perceptions towards an HIV cure6 among PHIV and key populations in the Netherlands.

Methods

This qualitative study describes the results of in-depth interviews exploring the influence of HIV on the QoL of PHIV and key populations in the Netherlands. Consolidated criteria for reporting qualitative studies (COREQ)24 are reported in Supplementary Table I.

Study population

Participants were eligible if they were a Dutch or English-speaking adult (≥ 18 years), living with HIV, or belonging to key populations. To ensure variation in participants’ characteristics, PHIV and participants from key populations were purposefully sampled from October 2020 till March 2021 from the Amsterdam Cohort Studies (ACS)25, the AGEhIV Cohort Study26, the infectious diseases outpatient clinic of the UMC Utrecht, and the Dutch HIV Association27. The sampling was scheduled to stop after inductive thematic saturation had been reached28.

Data collection

Semi-structured in-depth interviews were conducted online using WebEx (n = 31) or face-to-face at the UMC Utrecht (n = 11), depending on the participant’s preference. Participants received reimbursement for their time (€12, 50) and travel expenses. An interview topic guide was used (Table 1) to explore the current influence of HIV on the QoL of PHIV and key populations vulnerable to HIV. All in-depth interviews were conducted by the first author (Ph.D.), an academic health behavioral scientist. The in-depth interviews started with an introduction of the study and the interviewer and were followed by an explanation of the set-up of the interviews. Informed consent was orally discussed and signed by participants. Subsequently, information about socio-demographic characteristics of participants was collected. During the interviews, open-ended questions were used to stimulate participants’ own interpretation. Prompts were used to further encourage deliberation. Notes were taken during the interviews to describe nonverbal communication such as bodily movements and facial expressions. The interviews were conducted in either Dutch (n = 37) or English (n = 5) and lasted 45 to 90 min.

Table 1 Interview topic guide for PHIV and key populations.
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Data analyses

The in-depth interviews were conducted in a cycle of six interviews and transcribed verbatim29. The transcribed interviews of one cycle (i.e., consisting of 6 in-depth interviews) were assessed for inductive thematic saturation28. The interpretative thematic data analysis was peer reviewed by an expert in qualitative research [S.C.J.M.V] and consisted of six stages (Supplementary Table II)30,31. These stages enabled us to identify recurring topics, ideas, and patterns within our data. Inductive thematic saturation was reached after cycle 628. NVivo Version 12 supported the analysis32. In addition, the forward–backward method was used by K.A.G.J.R and L.d.G. to translate Dutch quotes into English. To enhance the reliability of the data analysis, we used the 15-item checklist by Braun and Clark30 to consider the quality of our thematic analysis.

Ethical approval

The study was approved by the ethics committee of the University Medical Center Utrecht (UMCU): 20-546/C.

Results

Of the 44 scheduled interviews, 42 were conducted. Twenty-nine of the participants had HIV, and 13 belonged to key populations. Nine of the 42 participants were women, of whom one identified as a transwoman, and ages ranged from 24 to 72 years. Overall, many PHIV and participants without HIV shared experiences about the multifaceted influence of HIV on their QoL that were described as predominant and negative or positive and meaningful. No differences were observed in the response or interaction between the online and face-to-face interviews.

Positive meaningful experiences of HIV on QoL

Both PHIV and participants from key populations described meaningful experiences related to HIV that were perceived as positive (Table 2).

Table 2 Quotes supporting the positive meaningful experiences of HIV on QoL.
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Appreciating life & health

Several participants with HIV explained that HIV confronted them with their own mortality. They described that this conformation made them appreciate life more and affected what added quality to their life (Table 2Quote 1). The realization about what is currently important for the QoL of participants with HIV grew due to HIV and was often linked to love and being loved by others (Table 2Quote 2). Many PHIV also indicated to appreciate their health, physical strength, and capabilities even more due to HIV. They shared that because they were grateful of their body fighting HIV, they took great pride in taking good care of their body (Table 2Quote 3).

Social support and sense of belonging

Some PHIV described to feel supported after they disclosed their HIV status to family, friends, and steady partners (Table 2Quote 4). Being part of a community was also described as a source of support for many participants with HIV. This community provided PHIV with a sense of belonging to something greater than themselves. Being part of the HIV community was explained as not only receiving support, but also providing support and providing a meaningful contribution (Table 2Quote 5).

Appreciation of the lifeline that ART offers

Participants, whether they had or did not have HIV, expressed to be grateful to be living in the times when there is effective treatment for HIV. Participants were aware that ART provides a lifeline. They were able to compare their situation to that of other people and explained the dependency on ART in a positive way. This let some interviewees to gratefully compare their current situation to regions of the world where ART is not easily available (Table 2Quote 6).

Managing the predominant influence of HIV

The evidence and experience with U = U and PrEP helped both PHIV and key populations to manage the predominant influence of HIV. PHIV explained that U = U helped them to feel better about themselves and reduced their self-stigma because it was scientifically proven that they were not infectious if they adhered to their medication (Table 2Quote 7). In addition, many participants described positive meaningful experiences related to U = U because it made explaining HIV to others easier (Table 2Quote 8). Some participants of both participants groups perceived PrEP as a way of preventing HIV and dealing with the fear of contracting HIV during sex with or without using condoms. This way, PrEP was explained to free a user and a sex partner with HIV of the control HIV has on the sex life of PHIV and key populations (Table 2Quote 9).

Life dominated by HIV

Some PHIV and participants from key populations explained the constant influence of HIV on their QoL as multifaceted and predominated (Table 3). The following sub-themes represent the facets of this influence (Table 3Quote 10).

Table 3 Quotes supporting how life is dominated by HIV.
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Being constantly dependent on ART

The dependency on ART was explained by both participant groups as a negative influence because HIV made a person perpetually dependent on ART to live a long and healthy life. The reduction of spontaneity due to the dependency on ART was another aspect that participants perceived as a negative influence on their QoL: Table 3Quote 11. In addition, interviewees from both groups mentioned that the side effects of ART negatively influenced their QoL. PHIV and key populations acknowledged an ambivalence by describing that ART improved drastically over the last decades, but this improvement was not always experienced in their current QoL. Some PHIV explained this in the form of side effects of ART: Table 3Quote 12. The dependency on ART caused both PHIV and participants from key populations to worry during the COVID-19 pandemic because they were concerned about the supply of ART that could undermine their ability to live normal lives (Table 3Quote 13). Participants with HIV also worried that the potential COVID-19 vaccines would reduce the effectiveness of ART (Table 3Quote 14).

Continuous struggle of disclosing HIV

Some participants PHIV and key populations described to experience a continuous struggle related to discussing HIV in new relationships. PHIV described situations when they decided to disclose or not to disclose living with HIV to family and friends. In instances when they opted for the latter, they strived for normality in their existing relationships: Table 3Quote 15. PHIV who did not disclose their HIV status to family and friends struggled with their decision. They indicated to feel alienated from family and friends and being distressed when they had not disclosed yet that they had HIV (Table 3Quote 16). In addition, some PHIV and participants from key populations expressed to feel obligated to discuss HIV in dating life to prevent feelings of dishonesty: Table 3Quote 17.

Ongoing fear related to HIV

Some interviewees from both groups mentioned ongoing fear related to HIV. The predominant influence of HIV was described as a reason for fear in several domains: fear of rejection among PHIV and fear of contracting HIV among members of key populations.

First, some participants with HIV mentioned that their fear of rejection made it difficult to disclose HIV to others. While several participants with HIV had experienced rejection due to HIV, they did not perceive this as a loss for themselves. Other PHIV who experienced rejection due to HIV were more afraid of rejection in the future. This fear led them to be more careful about discussing HIV (Table 3Quote 18). Second, several MSM without HIV expressed ongoing fear of contracting HIV. They shared to be scared of contracting HIV and mentioned it as the main reason for their current preventive behavior described as “I always use condoms” [male, 38, bisexual, living with HIV for 7 years] and “I don’t have anal sex” [male, 44 gay, key population]. Therefore, they described sex as both exciting and frightening at the same time (Table 3Quote 19). Several women and men with HIV talked about fear of transmitting or acquiring HIV when pregnancy was considered between partners: Table 3Quote 20.

Unyielding HIV-related self-stigma and stigma

Several participants from both groups described various experiences of HIV-related self-stigma and stigma. One of the aspects in which self-stigma was revealed was related to the communicable nature of HIV that made participants “feel dirty” [male, 33, gay, living with HIV for 5 years]. The moment other people reacted anxiously about HIV was explained as reinforcing self-stigma (Table 3Quote 21). The communicable nature of HIV was also often mentioned by long-term survivors who described a “back then” situation: Table 3Quote 22. In addition, many interviewees from both populations described to experience stigmatization by the general population. Especially interactions with health professionals, such as surgeons, nurses extracting blood for analyses, dentists, and pharmacists, were experienced as stigmatizing by PHIV (Table 3Quote 23).

Discussion

Our thematic analysis demonstrated the current influence of HIV on the QoL of PHIV and key populations in the Netherlands. Although the clinical management of HIV was considered to have changed in the last decades, and ART, PrEP, and U = U did lead to positive meaningful experiences related to HIV, both groups regarded the multifaceted and predominant influence of HIV on their QoL as too broad to be improved by clinical management alone.

Our results describe positive meaningful experiences of HIV among both participants groups. A review of the qualitative literature by Herron et al.16 illustrated similar findings among women with HIV. Many men and women with HIV in our study noted being grateful for being physically fit, and they attributed supporting and receiving support from a community to be a positive influence of HIV on their QoL. A possible explanation for positive adjustment to living with HIV resulting in a positive influence on the QoL may be a personal process of acceptance of HIV33,34. For example, participants who accepted living with HIV seemed to be motivated to support other people with HIV. Providing guidance to PHIV and key populations vulnerable to HIV in accepting and positively adjusting to their HIV status may reduce the need to conceal HIV and make it easier to disclose HIV, and ultimately result in a positive influence on their QoL.

Being diagnosed with HIV or being vulnerable to HIV in the pre-ART era may have caused a significant burden in the past5,16,35,36,37,38,39. The predominant and negative influence of HIV shared by participants in our study was described to have improved due to ART, PrEP, and U = U, but it did not disappear5,33,40,41,42. Improvements in clinical management in the ART era meant new discomforts for participants, such as the side effects of ART. Improved clinical management in the ART era may have significantly improved the clinical outlook and many aspects of the QoL of long-term survivors. This improvement of the negative influence of HIV may have not been experienced by people diagnosed more recently in the ART era. Unlike long-term survivors, recently diagnosed individuals or young individuals from key populations vulnerable to HIV have not experienced fear of HIV, the amount of medication, and its side-effects to the same extent as did long-term survivors diagnosed in the pre-ART era. Therefore, PHIV diagnosed in the ART era may not be used to the burden of the early HIV treatment and its severe side effects. Thus, participants from key populations and diagnosed with HIV in the ART era may have shared many negative influences related to ART that long-term survivors from the pre-ART era would not.

MSM participants with and without HIV revealed that the influence of HIV has changed due to PrEP in recent years because it provides more control over their sexual health and freedom. This changed influence was linked to the reduction of fear of HIV acquisition and to the increasing autonomy over their preferred choice of HIV prevention (e.g., use condoms or PrEP)22,43,44. Some studies found that PrEP may reduce stigmatization towards PHIV among MSM22, especially when selecting potential sex partners. We found that PHIV and key populations still experienced stigmatization and discomfort, despite PrEP, e.g., when discussing HIV with partners. Currently an increased openness about one’s HIV status was perceived difficult due to the limited knowledge about HIV and biomedical interventions in HIV management in the general population. The lack of media attention about these matters may explain the continued experiences of stigmatization45,46. Efforts in society, such as increased positive media coverage may improve the experience of discussing HIV. Additionally, we hypothesize that PrEP may cause a positive shift in moving HIV from a private to a more public matter35,36,37,38,39,47,48,49,50,51. If PrEP use is normalized in clinical practice and beyond, and knowledge about PrEP is universal, PHIV may feel that concealing HIV is unnecessary which could further reduce stigmatization they experience when discussing HIV with partners35,36,37,38,39,47,48,49,50,51.

In addition, the negative influence of HIV described by participants was mainly related to social factors and interpersonal relationships, as also noted by Andersson et al. who showed that these factors have changed in the last decades. In early years of the HIV pandemic when medication was not available, HIV was linked to activism and was a matter of constant public discussion5,16,35. Activism was necessary to make sure that HIV became a priority and to accelerate the development of effective HIV treatment. After the ART became available, HIV might have started to shift to being a private matter, leaving PHIV to deal with HIV alone. What started as a social and open discussion, might have changed to an individual and secret problem. During the ART era, PHIV started concealing HIV to normalize their life and separate it from other areas of their life. This normalization of their life may explain why participants described to find it difficult to disclose that they have HIV41,52,53. This concealment may have resulted in loneliness and stress, unlike the situation with other chronic diseases35,36,37,38,39,47,48,49,50.

Finally, our results showed that improvements in treatment and prevention of HIV were able to change the influence of HIV on the QoL experienced by PHIV and key populations. We hypothesize that new treatment and prevention options such as, long-acting ART or an HIV cure may further influence how HIV is experienced by PHIV and key populations54,55,56,57,58,59. Kerrigan et al.54,55 and Simoni et al.59 described that long-acting ART has the potential to remove the daily reminder of ART, and, in light of our findings, we hypothesize that this type of ART may help further improve the QoL of PHIV and key populations6. Ultimately, while new treatment and prevention options may change the experienced influence of HIV on the QoL54,55,59, only an HIV cure that would eliminate HIV from the body is believed to be the way to remove the multifaceted and predominant influence of HIV completely6.

Strengths and limitations

This study has several strengths. While previous studies focused mainly on exploring the burden of HIV among PHIV, our study explored the influence of HIV among both PHIV and key populations, particularly highlighting the presence of positive meaningful experiences related to HIV that received little attention in prior studies. By triangulating data analysis with three researchers [K.A.G.J.R., L.d.G. and S.C.J.M.V.], we were able to strengthen the credibility, transferability, dependability, and confirmability of our findings60. There are also some limitations. Due to the qualitative nature of our results, our study generated themes, issues, perspectives, and ideas that have societal relevance, but it was not meant to provide an external representative quantification61. Demographics, biomedical interventions, and time may play a role in QoL and stigma experienced now, compared to past experiences. Despite some observed variation among participants in age, education, time since diagnosis, and gender, we cannot assess differences in reported findings and demographics among participants due to the qualitative nature of our study. Additional research may explore how HIV transmission routes affect the QoL of PHIV and key populations. Although we aimed for maximum variation in our participants characteristics, our entire sample included mostly highly educated persons and MSM among key populations. Other groups of key populations vulnerable to HIV, such as sex workers, may offer different perspectives. We suggest further research among these groups and research in other geographical settings such as Sub-Saharan Africa to generate themes, issues, and perspectives relevant for other contexts. Further research is needed to investigate the generalizability of the themes explored and to address possible differences in the perceptions about the influence of HIV on QoL, for example among different groups of key populations.

Conclusion

In conclusion, despite all the advances in biomedical interventions in treatment, care, and prevention the multifaceted and predominant influence of HIV remains, especially on the societal and interpersonal levels. This influence requires further attention and support to improve the QoL of PHIV and key populations vulnerable to HIV. It remains important to support HIV community organizations in their efforts to reduce stigmatization and to continue improving biomedical interventions for HIV as these positively influence the QoL or further reduce the negative influence of HIV on the QoL of PHIV and key populations.