# From initial awareness to sustained involvement: using social and behavioral stage models to better understand engagement in HIV cure efforts in the Netherlands, France, Australia, and sub-saharan Africa

Maaike Noorman, Kim Romijnders, Sarah Lefebvre, Jillian Lau, Virginie Bakeroot, Jennifer Power, Christel Protiere, Sarah Stutterheim, John de Wit

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Maaike Noorman, Kim Romijnders, Sarah Lefebvre, Jillian Lau, Virginie Bakeroot, et al. From initial awareness to sustained involvement: using social and behavioral stage models to better understand engagement in HIV cure efforts in the Netherlands, France, Australia, and sub-saharan Africa. AIDS Care, 2025, pp.1-18. 10.1080/09540121.2025.2592889. inserm-05465901

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# From initial awareness to sustained involvement: using social and behavioral stage models to better understand engagement in HIV cure efforts in the Netherlands, France, Australia, and sub-saharan Africa

Maaike A. J. Noorman, Kim A. G. J. Romijnders, Sarah Lefebvre, Jillian S. Y. Lau, Virginie L. Bakeroot, Jennifer Power, Christel Protiere, Sarah E. Stutterheim & John B. F. de Wit

**To cite this article:** Maaike A. J. Noorman, Kim A. G. J. Romijnders, Sarah Lefebvre, Jillian S. Y. Lau, Virginie L. Bakeroot, Jennifer Power, Christel Protiere, Sarah E. Stutterheim & John B. F. de Wit (28 Nov 2025): From initial awareness to sustained involvement: using social and behavioral stage models to better understand engagement in HIV cure efforts in the Netherlands, France, Australia, and sub-saharan Africa, AIDS Care, DOI: 10.1080/09540121.2025.2592889

**To link to this article:** https://doi.org/10.1080/09540121.2025.2592889

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# From initial awareness to sustained involvement: using social and behavioral stage models to better understand engagement in HIV cure efforts in the Netherlands, France, Australia, and sub-saharan Africa

Maaike A. J. Noorman a*, Kim A. G. J. Romijnders b*, Sarah Lefebvre c, Jillian S. Y. Lau d,e,f
Virginie L. Bakeroot b,g, Jennifer Power h, Christel Protiere c,i, Sarah E. Stutterheim g† and
John B. F. de Wit a†

## ABSTRACT

HIV remains a persistent global health challenge, emphasizing the urgent need for an effective cure. Meaningful engagement of affected communities is essential for advancing HIV cure efforts. Using stage theories of behavior change, this paper investigated engagement as a dynamic process. Engagement was highlighted with five interconnected stages: awareness, perceived relevance, decision-making, participation, and sustained involvement. These stages were used to understand how individuals and communities engage with HIV cure efforts across diverse contexts. Drawing predominantly, but not exclusively, on our own work in the Netherlands, France, Australia, and plans for work in Sub-Saharan Africa, we identified common patterns and local variations in engagement. Previous research underscored the importance of tailoring engagement strategies to lived experiences and sociohistorical contexts, moving beyond one-way information sharing to foster deeper, more meaningful involvement and engagement. Applying social and behavioral stage models in further interdisciplinary research may help pinpoint key opportunities for intervention and promote sustainable engagement with affected communities. Thus, this structured lens of engagement holds potential to advance the ethical and effective development of HIV cure efforts, ensuring that diverse perspectives shape its future trajectory.

## ARTICLE HISTORY

Received 7 July 2025
Accepted 13 November 2025

## KEYWORDS

HIV cure; community engagement; MIPA; HIV

## SUSTAINABLE

### DEVELOPMENT GOALS

SDG3: Good health and well-being

## Introduction

HIV continues to affect around 39.9 million people worldwide (UNAIDS, 2024). Antiretroviral treatment (ART) has transformed HIV into a manageable condition, often requiring just one pill a day (Buell et al., 2016; Vella et al., 2012). Recent innovations, including dual therapy (Gibas et al., 2022) and long-acting injectable ART (Thoueille et al., 2022), have made HIV treatment more convenient and flexible for people with HIV. With consistent ART use, a person with HIV can achieve life expectancy comparable to that of people without HIV (van Sighem et al., 2010). However, despite advances in the management of HIV, challenges remain, such as long-term ART-related side effects, aging-related complications, drug resistance, and persistent stigma, which detrimentally impacts quality of life (Dybul et al., 2021; Katz et al., 2013; van der Kooij et al., 2021). Moreover, treatment is not curative and needs to be taken for life after diagnosis, and

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<footnote>aDepartment of Interdisciplinary Social Science, Utrecht University, Utrecht, the Netherlands; bJulius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, the Netherlands; cAix Marseille Univ, Inserm, IRD, SESSTIM, ISSPAM, Marseille, France; dDepartment of Infectious Diseases, The University of Melbourne at the Peter Doherty Institute for Infection and Immunity, Melbourne, Australia; eMonash Infectious Diseases, Monash Health, Clayton, Australia; fDepartment of Infectious Diseases, Alfred Hospital and Monash University, Melbourne, Australia; gDepartment of Health Promotion and Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, the Netherlands; hAustralian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Australia; iResearch on Healthcare Performance RESHAPE, Université Claude Bernard Lyon 1, Lyon, France</footnote>

<footnote>*M.A.J.N. and K.A.G.J.R. have contributed equally</footnote>

<footnote>†S.E.S. and J.B.F.W. have contributed equally</footnote>

<footnote>This article has been corrected with minor changes. These changes do not impact the academic content of the article.</footnote>
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access to treatment is far from universal. In 2023, only 77% of people with HIV had access to ART and a total of 630,000 people died from AIDS-related illnesses (UNAIDS, 2024). The gap in treatment coverage also contributes to continued HIV transmission, as individuals who are not virally suppressed can transmit the virus to others (Cohen et al., 2012), and, in 2023, 1.3 million new HIV infections were reported worldwide (UNAIDS, 2024). Moreover, recent funding cuts, including the U.S. freeze on foreign aid and support for PEPFAR, are expected to decrease ART access and increase HIV incidence in the years to come (Hontelez et al., 2025; Ten Brink et al., 2025; van Leeuwen et al., 2025).

These various and persistent challenges highlight the urgent need to develop an HIV cure. Since 2008, ten individuals have been cured of HIV following stem cell transplantation. While these cases show that a cure is biologically possible, the procedure remains risky, invasive, and prohibitively expensive, and is only used in the context of treating certain cancers. The next frontier in HIV cure efforts is to develop safe, cost-effective, and scalable strategies that could either remove HIV from the body entirely (i.e., eradication or elimination) or achieve durable control of the virus without the need for ongoing ART (i.e., post-intervention control, functional cure, or remission).

Recognizing the need for safe, cost-effective, and scalable HIV cure strategies, the International AIDS Society (IAS) launched the Global Cure Strategy initiative in 2010, publishing its first scientific strategy in 2012, with updates in 2016 and 2021 (Deeks et al., 2016, 2021; International et al., 2012). Over time, these strategies have increasingly emphasized the need for biomedical advances to be accompanied by attention to the social, behavioral, and ethical dimensions of HIV cure efforts. Early work, focused on supporting biomedical research by exploring hypothetical willingness to participate in HIV cure-related clinical trials among people with HIV (Noorman et al., 2023). These studies provided important early insights into participants' positive perceptions about hypothetical clinical trial participation, such as, altruistic motivations, expected personal benefits, and personal experiences and beliefs (Dubé et al., 2017; Noorman et al., 2023). In addition, negative perceptions were also shared, HIV cure efforts were perceived as risky, recognizing both clinical and social risks. Several psychosocial risk-management strategies were suggested, including the availability of transmission prevention for partners, guidance, and comprehensive research protocols (Noorman et al., 2023). However, the complexities of trial participation or questions of equity or broader community engagement in cure science were not addressed (Prins et al., 2020). As HIV cure efforts evolved, social and behavioral science research broadened its focus to view community engagement not merely as trial participation, but as a complex, multi-dimensional process (Noorman et al., 2025; Sutton, 2015). To better understand this multi-dimensional process, we outline its various stages and illustrate each with research conducted at that stage, leaning mostly on our own work in the Netherlands, France, Australia, and Sub-Saharan Africa (Lau et al., 2020a, 2020b; Lau et al., 2024; Lefebvre et al., 2024; Marcos et al., 2024; Marcos et al., 2025; Noorman et al., 2025; Noorman, de Wit, et al., 2024b; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024; Power et al., 2017; Power et al., 2018; Power et al., 2020; Protiere et al., 2018; Protiere, Arnold, et al., 2020; Protiere, Fiorentino, et al., 2020; Protiere, Fressard, et al., 2020; Protiere, Preau, et al., 2017; Protiere, Spire, et al., 2017; Romijnders et al., 2025; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, & Rozhnova, 2022; Stutterheim & Ratcliffe, 2021).

## Stage models to understand engagement in HIV cure efforts

Stage models propose that actions, such as participating in research, often occur in a series of stages rather than all at once (Sutton, 2015). These models suggest that individuals may move from initial awareness of an issue, to evaluating its personal or social relevance, forming intentions, making decisions, and ultimately acting, which can lead to ongoing involvement. Stage models will aid the understanding of engagement in HIV cure efforts, by clarifying the distinct psychological, informational, and relational factors that are likely to play a role at each stage (Sutton, 2015). Using stage models to highlight potential factors that may influence movement between stages and offers multiple entry points for promoting meaningful involvement of people with HIV in HIV cure efforts.

Stage-based models, including the Transtheoretical Model (TTM) and the Precaution Adoption Process Model (PAPM), have been applied extensively in HIV prevention and treatment research to understand behavior change and to guide interventions. For example, Fuster-RuizdeApodaca et al. (2017) used the PAPM to examine psychosocial determinants of HIV testing, identifying that individuals in the “unaware”
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stage exhibited low perceived susceptibility, while those in the “deciding” stage recognized increased benefits of testing. This stage-specific insight allowed targeted interventions to enhance knowledge and perceived benefits, facilitating progression toward testing. In the context of HIV pre-exposure prophylaxis (PrEP), Parsons et al. (2017). applied the TTM through their Motivational PrEP Cascade, delineating stages from awareness to adherence, and highlighting attrition at the contemplation and preparation stages – underscoring the need for interventions addressing ambivalence and readiness. Similarly, Sims-Haynes et al. (2025) found that, among substance-using Black women, readiness to use PrEP was positively associated with self-efficacy and social support, suggesting that enhancing these factors could facilitate movement through the stages of change. Stage models have also informed Treatment as Prevention (TasP) uptake: Meunier et al. (2020) found that HIV-negative men who were initially “unaware” of TasP had limited knowledge, whereas those in the “deciding” stage recognized its benefits, illustrating the importance of early informational interventions. For same-day antiretroviral therapy (ART) initiation, Moges et al. (2020) applied the TTM to reveal that patients in early stages were hesitant due to fear and stigma, whereas those in later stages exhibited readiness and commitment, highlighting the need for tailored, stage-specific strategies. Further, Imeri et al. (2022). conducted a systematic review of TTM-based interventions for medication adherence among patients with chronic conditions, including HIV, demonstrating that interventions targeting stage-specific barriers effectively supported progression through the stages of change. Collectively, these applications show that stage-based models can identify barriers, motivations, and points for intervention at each stage of engagement, providing a robust framework for understanding and promoting progression through complex behaviors.

Building on these applications of stage models in HIV prevention and treatment research, social and behavioral science can extend this understanding to examine how engagement in HIV cure efforts develops over time and what contextual factors sustain it. By focusing on the dynamic processes that shape engagement, such as motivation, trust, and perceived agency, this perspective can inform strategies that are responsive to participants’ evolving needs and experiences. This focus is essential for enhancing the relevance and acceptability, and addressing structural power imbalances, accountability, and inequities between researchers and affected communities of HIV cure efforts (Stutterheim & Ratcliffe, 2021). Figure 1 outlines our proposed

<figure><img src="image_17.png" /><figcaption>**Figure 1.** The conceptualized stages of engagement in HIV cure efforts.</figcaption></figure>
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framework to understand engagement in HIV cure efforts. The first stage, awareness, is foundational: individuals must know that HIV cure efforts exist before they can begin to engage with it. Once aware, individuals evaluate the personal or collective relevance of HIV cure efforts (Figure 1, stage 2). If HIV cure efforts are considered important, people may evaluate specific risk and benefits of engagement (Figure 1, stage 3), which could lead to different forms of involvement (Figure 1, stage 4), ranging from clinical trial participation to advocacy or community mobilization. For those who are engaged, their involvement may or may not be sustained over time (Figure 1, stage 5) (Sutton, 2015).

## Objective

This manuscript describes some of the current research on engagement with HIV cure efforts through stage models. To this end, we draw predominantly from empirical studies that we have previously conducted, and describe research we plan to conduct to fill gaps in our knowledge along the stages of change, in the Netherlands, France, Australia, and Sub-Saharan Africa. As such, the work presented in this paper is reflective of what we presented at Aids Impact 2025 in Casablanca, Morocco. Where possible, we link our work to research conducted by colleagues. However, this paper is not intended to be a systematic review, nor should it be read as offering generalizable conclusions, as it does not cover all studies on HIV cure efforts. Rather, our intention is to present select contemporary research to highlight key strands of HIV cure efforts and, in doing so, to provide a focused lens on emerging directions in the field. Situated in diverse local contexts, the studies we present from our own work offer valuable perspectives on how engagement is unfolding in practice. Furthermore, by illustrating contributions of social and behavioral science, we seek to shed light on global progress toward meaningful engagement and to identify key priorities for strengthening its role in the evolving landscape of HIV cure efforts.

## Progress and priorities along stages of engagement

### Stage 1: awareness

Social and behavioral science studies have increasingly examined awareness and understanding of HIV cure efforts among people with HIV, clinicians, and other key stakeholders. Awareness forms the foundation for any subsequent engagement or support for trials. Without basic knowledge of cure efforts, individuals cannot meaningfully consider participation, contribute to shaping research agendas, or advocate for community priorities (Dybul et al., 2021; Preau et al., 2018). Research in the Netherlands found that awareness among people with HIV, their partners, and gay, bisexual, and other men who have sex with men (GBMSM) was moderate (Mean = 3.08/5.00) (Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024). Qualitative findings showed that nearly all affected communities had heard of HIV cure efforts. Both people with HIV and key populations cited people like Timothy Ray Brown or Adam Castillejo, who were successfully cured of HIV, whilst being aware that this type of cure was not available to them. However, participants expressed a limited understanding of the details of HIV cure efforts (Noorman, de Wit, et al., 2024b; van Paassen et al., 2022). This is in line with research conducted by Kwan et al. (2022) in Hong Kong that showed that a mere 42% of men who have sex with men (MSM) with HIV were aware of HIV functional cure and with Saberi et al. (2022) US study showing a lack of awareness regarding HIV cure among young people with HIV. This limited understanding is perhaps unsurprising, given that Australian research has shown that media coverage tends to only highlight dramatic breakthroughs or future promises of a cure, rather than providing nuanced explanations of current research approaches or their near-term implications (Power et al., 2017). In the Netherlands, uncertainty about specific cure-related strategies appeared particularly pronounced among key populations without HIV (Noorman, de Wit, et al., 2024b). In contrast, some people with HIV were familiar with specific strategies, such as CRISPR-Cas, “kick and kill”, or “block and lock”, although few were able to explain these techniques when asked (Noorman, de Wit, et al., 2024b).

Interestingly, awareness of HIV cure efforts was not determined by HIV status alone. Instead, it was more strongly associated with community connectedness. For example, higher levels of awareness were observed among older individuals and non-cisgender men – groups often active within the Dutch HIV Association (Hiv Vereniging) through networks such as Posidivas (for women living with HIV) and the Long-Term
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Survivors (for people diagnosed before 1996). These types of community networks are known to support information sharing and collective empowerment (Brashers et al., 2002; Wallerstein et al., 2017), which likely contributes to greater awareness of ongoing HIV cure efforts. Community connections were also shown to influence awareness in an Australian study, where women with HIV – most of whom had a migration background – reported feeling disconnected from HIV community organizations, which may have contributed to limited awareness of opportunities for trial participation (Chong et al., 2025).

In sub-Saharan Africa, previous research on awareness, has also shown low awareness. For example, Moodley et al. (2016), in their study on stakeholders perspectives on (future) HIV cure in a South African HIV clinic, demonstrated low levels of awareness of HIV cure strategies among healthcare workers and patients. Understandings of cure were mainly non-biomedical and entangled with competing offers of cure based on traditional medicine and religion. More recently, a study by Laher et al. (2025) on perceptions of HIV cure efforts among people with HIV in South Africa, showed that people with HIV had knowledge of the concept of cure as eradication, but not as remission. These studies provided valuable insights but a better understanding of the extent to which people are aware of cure efforts in Global South contexts is needed. To fill this gap, the SPIRAL consortium was established in 2024. SPIRAL comprises a multi-disciplinary group of researchers, clinicians, biomedical scientists, modelers, health economists, social scientists, people with HIV, healthcare professionals, industry partners and communication specialists affiliated with institutions from the Global South and North that seeks to bridge knowledge gaps in the development and eventual implementation of HIV cure strategies for people with non-B subtypes of HIV, prevalent in sub-Saharan Africa. With work packages distributed between Zambia, Uganda, South Africa and the Netherlands, the SPIRAL consortium aims to work towards an ethical and equitable HIV cure research for all, and in those efforts, SPIRAL aims to meaningfully engage and empower key stakeholders to determine research priorities and build capacity for the future continuity of the HIV cure field in Africa. The first step in this regard is awareness. SPIRAL's focus on stakeholder engagement and communication thus seeks to improve awareness of HIV cure efforts in Sub Saharan Africa.

## Stage 2: perceived relevance

Once people are aware of HIV cure efforts, they can then consider the perceived relevance or importance of an HIV cure for themselves and potentially for others. It is therefore important to consider the symbolic and emotional significance of a potential cure, as these meanings have been shown to influence how people engage with HIV cure development and assess the relative risks and benefits of trial participation (Noorman, de Wit, et al., 2024b; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024; Preau et al., 2018). Research from the Netherlands has shown that people with HIV, their partners, as well as GBMSM without HIV, perceive HIV cure efforts as significant, especially for those facing challenges related to ART access and adherence, or HIV stigma (Noorman, de Wit, et al., 2024a, 2024b). Similarly, research in Australia showed that people with HIV often defined a cure in social rather than biomedical terms – as a state in which they would no longer worry about transmitting HIV to others, concerns from family and friends would be alleviated, and the burden of HIV stigma would be lifted (Power et al., 2020). This is supported by work conducted in the US by (Sylla et al., 2018). In their focus group study with people with HIV, a possibility of HIV cure was valued because it has the potential to destigmatize HIV, can liberate people with HIV from concerns about transmitting HIV, and because it would offer freedom from having to take medication. Also in Switzerland, a cure was considered relevant because it could decrease stigma and eliminate medication use (Lesage et al., 2020).

Research in France has further shown that social representations of HIV cure efforts among people with HIV and health care professionals can be grouped into three main perspectives. The first associates HIV cure-related clinical trials with a decline in health and quality of life for people with HIV. The second perceives HIV cure-related trials as a biological and epidemiological regression, evoking a time when HIV was left uncontrolled. The third associates HIV cure-related trials to scientific progress included in HIV's historical culture (Preau et al., 2018). Studies from France have also shown that acceptability of HIV cure trials among people with HIV and clinicians is shaped by the socio-historical context of HIV, their social identities, and their mutual trust and shared commitment to innovation. However, personal relevance varied and depended on lived experiences shaping a gradient from those who were most engaged or interested
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in trial participation to the most reluctant (Protiere, Spire, et al., 2017). For example, in the Australian context – where ART is widely available and covered through national health insurance, as in the Netherlands and France – a cure was thought to offer people with HIV freedom from persistent worry about their future health, and relief from the everyday impact of stigma – both enacted and anticipated – on their social relationships (Power et al., 2020). Similarly, in the context of the Netherlands, where most people live long and healthy lives with HIV, a cure was viewed as a way to further normalize day to day lives. Interest in an HIV cure was strongest among those most affected by HIV, including individuals with a migration background and those experiencing greater concerns and more negative emotions related to their HIV status (Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024). For key populations, i.e., partners of people with HIV and MSM, the perceived relevance of HIV cure also depended on their perspectives on HIV. For example, although HIV was considered a serious condition, personal risk was perceived to be low due to the availability of effective prevention tools. For many, the primary perceived benefit of a cure was increased sexual freedom (Noorman, de Wit, et al., 2024b; Romijnders et al., 2025; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, & Rozhnova, 2022), which was also reflected in survey results demonstrating that younger, gay men on PrEP showed a higher interest in HIV cure research (Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024). Similar findings showing perceptions that an HIV cure could lead to greater sexual freedom have also been reported in China (Zhang et al., 2018). In Australia and the Netherlands, expectations for an HIV cure were high with only complete eradication being considered to be a cure (Noorman, de Wit, et al., 2024a; Noorman, de Wit, et al., 2024b; Power et al., 2020; Romijnders et al., 2025; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, & Rozhnova, 2022). This has similarly been found in the US and in China (Sylla et al., 2018; Zhang et al., 2018). Additionally, studies from France and the Netherlands have shown that complete eradication or p

ost-intervention control – sustained viral suppression without ART but with a persistent viral reservoir – was also expected to most improve quality of life and sexual satisfaction, and reduce stigma (Protiere, Spire, et al., 2017; Romijnders et al., 2025; Wu et al., 2018; Zhang et al., 2018). At the same time, post-intervention control was viewed as enhanced treatment, akin to long-acting injectable ART (Noorman, de Wit, et al., 2024a; Noorman, de Wit, et al., 2024b). While an HIV cure was also expected to improve sexual satisfaction and reduce stigma among people with HIV, partners, and GBMSM without HIV, only people with HIV anticipated quality of life benefits (Romijnders et al., 2025). Studies also reported that people had concerns about post-intervention control as it is not expected to offer certainty about remaining free of HIV (Noorman, de Wit, et al., 2024b; Power et al., 2020).

While these findings demonstrate the nuances of perceived relevance of an HIV cure in the Global North, our understanding of the perceived relevance of HIV cure strategies in the Global South is much less comprehensive. This is a significant gap, as people with HIV in these countries may have less consistent access to ART, and social and cultural contexts influence how individuals perceive the potential outcomes of a cure, and the risks and benefits of participating in trials. In sub-Saharan Africa, participants in a Laher et al. (2025) qualitative study in South Africa (Laher et al. (2025)) indicated that, for people with HIV, a cure was perceived to be likely to improve happiness, reduce emotional burdens of disclosure, and facilitate HIV-free generations. Additionally, a study by Dubé, Mthimkhulu, et al. (2023), also in South Africa, showed that HIV cure strategies were perceived to be important to address the issue of defaulting on HIV treatment. This work is important and should be expanded, as people in Southern and Eastern Africa bear the highest burden of HIV(Parker et al., 2021). However, the current literature from Sub-Saharan Africa focuses almost exclusively on South Africa (Noorman et al., 2023). The lived experiences of people with HIV in the Global South thus require additional attention in the coming years. In that context, the SPIRAL project will explore the perceived relevance of a cure among people with HIV, their partners, and key populations in not only South Africa but also Zambia and Uganda.

## Stage 3: decision-making

The third stage moves from understanding relevance to decision-making. Generally, decision-making is thought to be guided by how people weigh specific risks and benefits (Baron, 2007). While engagement with HIV cure efforts extends well beyond decisions to participate in clinical trials (Henderson et al.,
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2019; Marcos et al., 2024), much of the research on decision-making in relation to HIV cure efforts has focused on attitudes towards (potential) trial participation – particularly studies involving analytical treatment interruption (ATI). ATI trials, which involve closely monitored pauses in antiretroviral treatment to assess whether an experimental cure strategy can control the virus without ART, are therefore ethically complex.

Studies from France have shown that self-identification as an HIV activist, self-confidence as an HIV positive person, altruism, desire to contribute to the fight against HIV, like previous generations, and concerns about HIV transmission are associated with greater willingness to participate in trials (Fiorentino et al., 2019; Protiere, Spire, et al., 2017). Barriers to trial participation include precarious financial situations and doubts about the long-term efficacy of ART. Similarly, research in Australia found that people with HIV were often motivated to consider ATI trial participation for altruistic reasons, particularly the chance to contribute to the broader social good. However, they also expressed concerns about viral rebound during ATIs, including fears of onward transmission and anxiety around losing control of their health (Power et al., 2018). These concerns were echoed by participants in the Netherlands Cohort Study on Active HIV Infection (NOVA), who also emphasized the emotional difficulty of interrupting treatment when asked about a hypothetical ATI (van Paassen et al., 2022). Interestingly, key populations without HIV in the Netherlands were generally supportive of ATI trials, believing they had access to sufficient prevention methods to manage potential transmission risks. These findings are relatively in line with studies outlining willingness to participate in HIV cure trials previously conducted in Switzerland (Lesage et al., 2020), the United States (Henderson et al., 2019; Hill et al., 2025; Saberi et al., 2022), and South Africa (Dubé et al., 2017; Dubé, Mthimkhulu, et al., 2023).

Another important factor shaping decision-making is the doctor – patient relationship (Protiere et al., 2018). Studies from France have shown that both people with HIV and clinicians agree that patients are more likely to consider participating in a cure trial if their clinician supports it (Protiere, Spire, et al., 2017). However, clinicians and people with HIV make different trade-offs regarding HIV cure strategies and regarding the most decisive criteria to consider in the decision-making process (Ahmed et al., 2025; Protiere, Arnold, et al., 2020; Protiere, Spire, et al., 2017). For example, both consider the risk of acute adverse events important, but clinicians give it greater weight when deciding whether to join or propose a HIV cure clinical trial (Protiere, Arnold, et al., 2020). Clinicians' willingness to propose HIV cure trials is linked with the priority they give to prevention compared to HIV cure and to how they perceive the impact of HIV on their patients' lives, with higher reluctance among physicians with a less research-oriented professional activity and those not informing themselves about cure trials through scientific literature (Protiere, Fressard, et al., 2020). Clinicians in Australia also were, in principle, supportive of HIV cure efforts but were often uncomfortable enrolling their own patients in an ATI trial, or promoting these trials in their clinics, due to perceived risks (Lau et al., 2020a). This is in line with previous work conducted by Dubé et al. (2017) showing that clinicians see substantial clinical risks in ATI trials. Additionally, Australian work has shown that there are significant gaps in knowledge about HIV cure clinical trial methodology among both people with HIV and clinicians.

While several common concerns and motivations appear across these different contexts, research from Australia also underscores the importance of amplifying diverse voices. One study focusing on women living with HIV emphasized additional challenges, such as fertility concerns, and practical barriers to participation (Chong et al., 2025). Dubé et al. (2020) have similarly shown that women have unique concerns in relation to HIV trial participation. Given that most people with HIV globally are women, such perspectives are particularly important. Supporting women's meaningful involvement in HIV cure efforts require attention to reproductive health, their specific ATI-related concerns, and inclusive recruitment practices. These considerations are also reflected in the SPIRAL project, which explicitly aims to recruit more women in its trials.

Including more diverse voices also requires careful consideration of language and cultural context. In Australia, clinicians expressed concern that women with HIV, many from migrant backgrounds, may struggle to understand eligibility or provide informed consent. This underscored the need for inclusive trial recruitment processes and materials, while also highlighting clinicians' limited time or capacity to explain cure science and trial processes to patients, particularly when language barriers were present (Chong et al., 2025).
<figure><img src="image_22.png" /></figure>

Similar concerns are central to the Ethical Practice in ATI Trials in Sub-Saharan Africa (EPATS) project, which uses Intervention Mapping to systematically assess the needs of diverse populations. In Sub-Saharan Africa, where HIV prevalence remains among the highest globally, innovative HIV cure trials are increasingly incorporating ATI. These trials, while scientifically promising, often proceed without comprehensive psychosocial support structures in place. This raises a critical question about ensuring ethical and social support during these trials. Participants may not receive adequate counseling or services that help them navigate the mental, emotional, or social challenges linked to stopping ART. Further, informed consent procedures often fall short of enabling fully informed, contextually grounded decisions. Consent documents may comply with regulations, but, because of that, they often do not reflect participants lived realities, literacy levels, or decision-making needs. Also, many trials lack mechanisms to ensure meaningful community involvement throughout the research process, from design to dissemination (Dubé & Perez-Brumer, 2024; Henderson et al., 2019; Lefebvre et al., 2024; Lesage et al., 2020; Ma et al., 2016; Marcos et al., 2024; Preau et al., 2018; Protiere et al., 2018; Protiere, Preau, et al., 2017; van Paassen et al., 2022; Zhang et al., 2018). This leaves participants and key populations with limited influence over how trials are shaped and conducted. The goal of EPATS is thus to ensure robust informed consent and provide evidence-based support to potential ATI participants, their partners, and communities.

As such, EPATS builds on previous South African research on ATI trial participation and informed consent processes (Dubé, Mthimkhulu, et al., 2023; Laher et al., 2025; Moodley et al., 2019; Mthimkhulu et al., 2025). For example, Mthimkhulu et al. (2025) demonstrated that, despite support during ATI, participants expressed an urgent need for psychological counseling and community resources to help manage ATI-related stressors, underscoring the importance of a healing-centered, trust-based approach. In addition to managing stressors, research by Dubé, Morton, et al. (2023) showed that partner protection is critical to address ethical and feasibility challenges during ATI. In South Africa, consent must go beyond procedural clarity to include iterative, plain-language communication and psychological support to avoid curative misconceptions and foster long-term trust (Moodley et al., 2016). Further, previous research in South Africa has emphasized the need for counseling that is sensitive to local beliefs and socio-behavioral contexts (Laher et al., 2025). Some older research conducted by Moodley et al. (2016), in a time when HIV cure knowledge and awareness was presumably lower than it currently is, suggested a low willingness to participate in trials if the perceived benefits or therapeutic effects were unclear or unlikely. Moodley and colleagues also reported that the discussion of a cure during this study itself raised false hopes among participants. These findings demonstrate that careful consideration should be given to the explanation of risks and benefits in consent processes, as well as the language used to convey risks and benefits or speaks of HIV cure more broadly (Marcos et al., 2025). The SPIRAL project aims to provide more clarity on the risk and benefit balance in HIV cure efforts through qualitative interviews and a Delphi study that will unravel what is desired by, and acceptable to, a range of stakeholders, including people with HIV, their partners, and key populations.

Studies on trial participation often explore the hypothetical willingness to participate in HIV cure trials, whereas studies on the actual experiences of people with HIV who have participated in such trial are less common (Noorman et al., 2025; Noorman, de Wit, et al., 2024b; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024). One exception is the French ANRS-AMEP-EHVA-T02 study, which explored actual decision-making among people with HIV invited to join a European placebo-controlled trial involving ATI (Fiorentino et al., 2019; Protiere, Arnold, et al., 2020; Protiere, Fressard, et al., 2020; Protiere, Spire, et al., 2017). As this trial was discontinued after enrolling only two participants due to recruitment challenges, the study's focus shifted to those who declined participation. Results showed that, in line with previous findings from Thailand by Henderson et al. (2019), altruism was a key motivation for participation in an HIV cure trial. While ATI was not the main deterrent, contrary to clinical teams' expectations and earlier findings, other barriers emerged (Henderson et al., 2019). These included the perception that one could live a normal life with HIV, the anticipated psychological burden of revisiting the trauma of diagnosis during the trial, and the disruption that close monitoring would cause to daily life (Lefebvre et al., 2024). These findings align with work conducted in Belgium by De Scheerder et al. (2021), who investigated motives for, and barriers to, participation in the HIV-STAR trial among people with HIV enrolled in the trial. Their findings showed that motives for enrolling in a trial were the prospect of improved health, and the ability to contribute to finding an HIV cure. The French findings, including those in the ANRS-
<figure><img src="image_23.png" /></figure>

Rhiviera-01 trial who explore motivations, and the experience of clinical trial participation also reflect similar barriers, facilitators, and motives reported in the United States (Dubé et al., 2020; Gilbertson et al., 2019; Noorman et al., 2025). Furthermore, a Swiss study has shown that trial participation decisions can best be supported through clear communication about the duration and frequency of appointments, preliminary results of the study, and the consequences of interrupting ART (Lesage et al., 2020).

## Stage 4: engagement

At the fourth stage, individuals move beyond mere intention and begin to actively engage with HIV cure efforts, which is not limited to participation in clinical trials (Marcos et al., 2024; Marcos et al., 2025). To date, empirical research on actual engagement remains scarce (Marcos et al., 2024; Marcos et al., 2025; Noorman et al., 2025; Noorman, de Wit, et al., 2024b; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024) Studies from the Netherlands and France suggest that such engagement is often limited and largely passive: most people with HIV and key populations show interest in HIV cure efforts only when opportunities – such as events or information – present themselves, rather than proactively seeking them out (Lefebvre et al., 2024; Noorman, de Wit, et al., 2024a; Noorman, de Wit, et al., 2024b; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024). This passivity may reflect uncertainty about what engagement entails, as well as doubts about one's own ability to participate meaningfully.

Research on actual participation experiences is also limited but growing. In France, social sciences are formally included in the ANRS-Rhiviera consortium, a multidisciplinary initiative towards control of reservoirs and HIV remission, to support research from the fundamental to the clinical implementation (Fiorentino et al., 2019; Preau et al., 2018; Protiere, Arnold, et al., 2020; Protiere, Fressard, et al., 2020; Protiere, Spire, et al., 2017). At the time of this writing, social science studies are part of four HIV cure clinical trials protocols in France, using questionnaires and interviews with both participants and decliners at multiple timepoints, to explore motivations, reasons for refusal, perceived risks and benefits, and experiences – particularly during and after the ATI phase. Designed to allow for both independent and meta-analyses, these studies also consider differences in strategies across these four trials and in participant profiles, which will provide insight into how trial design may shape the engagement experience.

Work from other research groups has also shown, for instance, that measures to make planning study visits easier, as well as clear communication and guidance, can improve people's experience with trial participation (De Scheerder et al., 2021), as can clear and accessible informed consent procedures and appropriate financial compensation (Dubé et al., 2020). Additionally, a study conducted by (Gilbertson et al., 2019) among HIV cure trial participants showed that participation was experienced as beneficial and meaningful with positive indirect impacts on health care experiences, HIV knowledge, intimate relationships, and psychological well-being. In the context of the South East Asia Research Collaboration in HIV (SEARCH) RV411 clinical trial in Thailand (Henderson et al., 2019), trial participation was reported to be positive because it offered a break from ART adherence but found the monitoring visits burdensome and some of the optional procedure painful and invasive, which is in contrast to (De Scheerder et al., 2021) where participants in the HIV-STAR project reported invasive sampling to be less of a burden than they initially anticipated. In Hill et al. (2025) longitudinal investigation of trial participants' psychosocial experiences before, during, and after an ATI trial in the US, participant reported unease about seeing their viral load increase and CD4 count decrease, but nonetheless maintain a curious and optimistic outlook on their health, placing emphasis on the importance of their contribution and seeking support when needed.

The EPATS project plans to assess participants' experiences with engagement in HIV cure clinical trials to better understand what forms of support may be needed during participation when trials are conducted in resource-limited settings. This includes identifying potential mental, emotional, social, economic, or relational burdens, and exploring strategies to mitigate any unintended negative consequences. This work builds on previous studies investigating support needed for engagement in ATI trials in South Africa, particularly the work of Moodley et al. (2019) showing that robust informed consent in South Africa will require significant effort to maximize potential participants understandings of trial procedures, their risks, and the need for long-term follow-up, and, as also emphasized by, there is a substantial need to center people with HIV and their partners, and provide psychological support throughout and beyond engagement with HIV cure clinical trials, including ATI trials. It further build forth on findings from Hill et al.
<figure><img src="image_24.png" /></figure>

(2025) showing that, after participation in an ATI trial, participants felt ambivalence about returning to ART and disappointment about the current permanency of HIV. EPAT seeks to anticipate potential negative impacts of ATI trials and circumvents them beforehand.

In France, field observations from completed and ongoing trials have additionally highlighted the central role of healthcare providers in the implementation and conduct of HIV cure clinical trials, and have revealed several tensions raising issues related to the complexity of medical decision-making in situations of uncertainty, the gap between research protocols and clinical practice, and the emotional and symbolic burden of treatment resumption at the end of an ATI, as was also demonstrated by Hill et al. (2025). Yet, little is known about how healthcare providers experienced their involvement and how they interact with participants during these trials. This will be explored in the French Sidaction and Aidsfonds-UPMED study and within the ANRS-Rhiviera-03 trial using mixed methods (Protiere, Arnold, et al., 2020; Protiere, Fressard, et al., 2020; Protiere, Spire, et al., 2017).

## Stage 5: sustained and meaningful involvement

Once individuals become involved in HIV cure efforts, sustaining their engagement becomes increasingly important, but is not always straightforward. Meaningful involvement can be hard to operationalize, and people with HIV or members of key populations may question their ability to contribute beyond participating in studies (Dubé, Barr, et al., 2023; Marcos et al., 2024; Marcos et al., 2025). Still, promising examples from Australia, France, and the Netherlands show that long-term, meaningful engagement is achievable (Lefebvre et al., 2024; Marcos et al., 2024; Marcos et al., 2025; Power et al., 2017; Power et al., 2018; Power et al., 2020; Protiere et al., 2018; Protiere, Arnold, et al., 2020; Protiere, Fiorentino, et al., 2020; Protiere, Fressard, et al., 2020; Protiere, Preau, et al., 2017; Protiere, Spire, et al., 2017; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, & Rozhnova, 2022).

The 2019 INSPIRE project workshop brought together people with HIV, researchers, and clinicians to identify barriers to engagement and propose solutions (Lau et al., 2020a, 2020b). It highlighted the need to address power imbalances between researchers and communities to enable meaningful involvement of people with HIV. Achieving this requires valuing community expertise through fair compensation and genuine partnership, investing in social research to understand trial experiences, and fostering two-way learning between researchers and communities.

Australia has since built on these principles. HIV cure is now a regular topic at national conferences and training programs, such as the 2024 HIV GP (primary care) Mentor Program, and the Australasian HIV/AIDS conference (ASHM, 2022, 2025). A local HIV cure-focused Community Advisory Board (CAB) has been established and engaged through initiatives like “exchange days”, where CAB members and scientists meet (“CAB meets lab”), and basic scientists visit community-based organizations to learn more about each other’s work. Peer support officers and peer navigators have also participated in an educational workshop on HIV cure, which contributed to increased acceptance of interventional trials and ATIs.

CABs have also played significant roles in France and the Netherlands. In France, the patient-led NGO European AIDS Treatment Group (EATG) and the inter-associative collective TRT-5 CHV have been central to the HIV response. TRT-5 CHV is part of the ANRS-Rhiviera consortium, and its active involvement in HIV cure efforts have shifted from reviewing informational materials to contributing from the earliest stages of trial design through to the communication of results. This integrated approach reflects a broader commitment to meaningful collaboration (Dubé & Perez-Brumer, 2024; Dubé, Barr, et al., 2023). Similarly, in the Netherlands, CABs have been involved in numerous HIV cure studies, where they have helped shape research to better align with the lived experiences of participants. For instance, in response to the commonly posed question “What would an HIV cure mean to you?”, a participant suggested a more relatable phrasing: “What would change for you if you woke up tomorrow without HIV?” (Marcos et al., 2024; Marcos et al., 2025; Noorman et al., 2025; Noorman, de Wit, et al., 2024b; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024; Romijnders et al., 2025; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, & Rozhnova, 2022; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, van der Loeff, et al., 2022).

In the Netherlands, engagement extended beyond advisory groups. Findings were shared through community events, magazines (Redactie hiv vereniging, 2023; van Zeeland, 2023), and accessible fact sheets,
<figure><img src="image_25.png" /></figure>

contributing to broader participation and more nuanced interpretation of results. To support ongoing engagement, the *Linking and Learning* project created an online platform offering accessible information on HIV cure efforts and opportunities for mutual learning. It is now being adopted by the SPIRAL project to further strengthen community-researcher collaboration and knowledge exchange.

Meaningful involvement may uncover new voices and connections, underscoring the relevance of mapping the stakeholder landscape. As part of the SPIRAL project, a stakeholder mapping process focused on HIV cure efforts in sub-Saharan Africa are currently being conducted. This mapping began at a large SPIRAL event with regional research partners and uses a snowballing approach to identify and categorize stakeholders based on their roles and connections within the field. Using the 9Cs framework, stakeholders are grouped into categories such as commissioners, customers, capabilities, control, coordination, competition, context, culture, and community. This approach helps create an overview of the emerging HIV cure landscape, highlighting key actors involved in the design, implementation, and dissemination of research.

To further assess stakeholders' relative influence, the Stakeholder Salience model, which examines how power, legitimacy, and urgency shape the visibility and influence of different actors, will be applied. This analysis will help identify whose voices are currently shaping the HIV cure efforts agenda – and whose are not – enabling more deliberate and inclusive engagement strategies. Identifying and understanding stakeholders ensures that they not only become informed about HIV cure efforts but also supported in progressing through different stages of engagement – from initial awareness to sustained, meaningful involvement. This lays the groundwork for inclusive, long-term collaboration throughout the research process.

## Discussion

The IAS HIV Cure Research Agenda underscored the essential role of social and behavioral science in advancing HIV cure efforts. Social and behavioral research can identify barriers and opportunities for the meaningful engagement of people with HIV and affected communities in HIV cure efforts across diverse identities and communities, monitor trial accessibility and transparency, and examine future impacts, including the acceptability and equity of potential curative interventions. In recent years, social and behavioral science contributions have gained momentum (Brashers et al., 2002; Dubé et al., 2021; Dubé, Barr, et al., 2023; Fuster-RuizdeApodaca et al., 2017; Hill et al., 2025; Lefebvre et al., 2024; Marcos et al., 2024; Marcos et al., 2025; Moges et al., 2020; Mthimkhulu et al., 2025; Noorman et al., 2025; Noorman, de Wit, et al., 2024b; Power et al., 2017; Power et al., 2018; Power et al., 2020; Protiere, Fiorentino, et al., 2020; Protiere, Fressard, et al., 2020; Romijnders et al., 2025; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, & Rozhnova, 2022; Tucker et al., 2014; Wallerstein et al., 2017). This shift was also visible at AIDS Impact 2025, where, for the first time, multiple sessions focused specifically on the contributions of social and behavioral science to HIV cure research (Kasprowicz & Ndung'u, 2025; Noorman et al., 2025). Central to HIV cure efforts, this shift is supporting meaningful engagement of affected communities. In addition, the shift to include social and behavioral research in HIV cure efforts not only supports trial feasibility, build trust, and safeguard participant well-being, but also supports equity and justice. Drawing on insights from the Netherlands, France, Australia, and planned work in Sub-Saharan Africa, our work has outlined where we currently stand in understanding engagement in HIV cure efforts. Using stage models as a structured lens, emerging findings were synthesized, gaps were identified, and priorities for HIV cure efforts were set across different social, cultural, and institutional contexts.

Emerging findings from the Netherlands, France, and Australia demonstrated that engagement in HIV cure efforts is shaped not only by practical concerns, such as trial logistics or perceived risks, but also by the emotional and symbolic meanings individuals attach to the idea of a cure for HIV. These meanings are grounded in lived experiences and broader socio-historical contexts (Noorman, de Wit, et al., 2024b; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024; Power et al., 2020; Preau et al., 2018; Protiere et al., 2018; Romijnders et al., 2025; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, & Rozhnova, 2022). People with HIV and affected communities often described engagement as a way to contribute to collective progress, help others, or reframe their HIV diagnosis in a positive light (Chong et al., 2025; Power et al., 2017; Protiere, Fiorentino, et al., 2020). These findings underscore that engagement extends beyond trial participation and feasibility, it also reflects values, identities, and
<figure><img src="image_26.png" /></figure>

meaning-making that must be acknowledged in ethical and participatory approaches to cure research. When viewed through the stage models, the existing literature reveals uneven empirical coverage across stages (Sutton, 2015). Most research has concentrated on the early stages (1–3) (Chong et al., 2025; Lau et al., 2020a, 2020b; Noorman, de Wit, et al., 2024b; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024; Power et al., 2017; Power et al., 2020; Preau et al., 2018; Protiere et al., 2018; Protiere, Fiorentino, et al., 2020; Protiere, Spire, et al., 2017; Romijnders et al., 2025; Romijnders, de Groot, Vervoort, Basten, van Welzen, Kretzschmar, Reiss, Davidovich, & Rozhnova, 2022; van Paassen et al., 2022), while far less is known about active engagement (Stage 4) and sustained involvement (Stage 5) (Chong et al., 2025; De Scheerder et al., 2021; Lau et al., 2020a, 2020b; Noorman et al., 2025; Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024; Positive Women Victoria, 2024; Power et al., 2017; Protiere, Arnold, et al., 2020; Protiere, Spire, et al., 2017). Where evidence exists, it suggests that engagement in later stages depends on reciprocal relationships of trust, transparency, and ongoing communication between researchers and participants. Ongoing initiatives, such as the ANRS-Rhiviera and EPATS projects, are beginning to address these gaps by exploring how people experience participation and continued involvement in real-world trial settings.

Applying stage models across settings revealed recurring mechanisms that shape engagement. Community connectedness facilitates awareness (Stage 1), lived experience and identity shape perceived relevance (Stage 2), and altruism, solidarity, or concern for others guide decision-making (Stage 3). Later stages of engagement are often supported by community advisory boards, continuous communication, and trust-building mechanisms. Collectively, these findings suggested that stages are interlinked: informational, emotional, and relational factors accumulate and influence movement through the continuum of engagement rather than operating in isolation. At the same time, engagement is deeply embedded in social infrastructures that vary across contexts. In the Netherlands, women were relatively well-informed about cure research, supported by community networks such as the Posidivas (Noorman, de Wit, Marcos, Stutterheim, Albers, et al., 2024). In contrast, in Australia, women often reported limited awareness and weaker community connections (Chong et al., 2025). These differences illustrate how community infrastructure and gender representation shape engagement opportunities. Recent efforts to address such inequities include collaboration with Positive Women Victoria, which has co-developed educational webinars and achieved gender parity on the national HIV cure community advisory board (Positive Women Victoria, 2024). Similarly, the SPIRAL consortium promotes global representation by incorporating perspectives from Sub-Saharan Africa, particularly from women and individuals with non-B HIV subtypes who have historically been under-represented in HIV cure efforts.

Engagement is also influenced by interactions among professional and community stakeholders. Evidence from France and Australia highlights the pivotal role of clinicians in people's decision-making about trial participation (Lau et al., 2020a, 2020b; Preau et al., 2018; Protiere, Arnold, et al., 2020; Protiere, Spire, et al., 2017). Clinicians' knowledge, communication style, and personal views about HIV cure efforts were found to directly shape participants' perceptions of risk, benefit, and trust (Lau et al., 2020a, 2020b; Preau et al., 2018; Protiere, Arnold, et al., 2020; Protiere, Spire, et al., 2017). However, clinicians' institutional responsibilities sometimes diverge from participants' altruistic or community-driven motivations, highlighting tensions between clinical obligations, ethical considerations, and community priorities. Recognizing and openly negotiating these tensions, through stakeholder mapping, co-design processes, and participatory governance, will be crucial for advancing equitable and sustainable engagement practices.

Future social and behavioral research should focus on evaluating the effectiveness and equity of engagement strategies. Priority areas include assessing how communication and education initiatives influence awareness and perceived relevance; how clinician involvement and advisory structures affect decision-making and trust; how community partnerships support long-term involvement; and how individuals and communities move across stages of engagement over time. Such longitudinal and process-oriented perspectives will help clarify how engagement develops and what factors enable or impede progression across the five stages. Evaluations should employ mixed-method and participatory approaches to capture both measurable outcomes (e.g., recruitment, retention, knowledge gains) and relational processes (e.g., empowerment, reciprocity, and trust-building). Importantly, these evaluations should examine whether engagement strategies effectively reach populations historically excluded from HIV cure research, including women, people with non-B HIV subtypes, and communities in resource-limited settings.
<figure><img src="image_27.png" /></figure>

## Conclusion

The research brought together in this paper underscores that engagement in HIV cure efforts is a dynamic and evolving process shaped by emotional, social, and structural factors. By examining five interconnected phases in HIV cure efforts engagement, – awareness, perceived relevance, decision-making, participation, and sustained involvement –, shared patterns and local variations in engagement emerged across diverse contexts. Applying the proposed stages perspective in future interdisciplinary HIV cure efforts can help identify key opportunities for intervention, align engagement strategies with lived experiences, and support more sustainable and meaningful engagement with affected communities in HIV cure efforts.

## Acknowledgements

The authors used ChatGPT (OpenAI) for minor language suggestions. All intellectual content was generated and verified by the authors.

## Author contributions

CRediT: **Maaike A. J. Noorman**: Conceptualization, Writing – original draft, Writing – review & editing; **Kim A. G. J. Romijnders**: Conceptualization, Writing – original draft, Writing – review & editing; **Sarah Lefebvre**: Conceptualization, Writing – original draft, Writing – review & editing; **Jillian S. Y. Lau**: Conceptualization, Writing – original draft, Writing – review & editing; **Virginie L. Bakeroot**: Conceptualization, Writing – original draft, Writing – review & editing; **Jennifer Power**: Conceptualization, Writing – original draft, Writing – review & editing; **Christel Protiere**: Conceptualization, Writing – original draft, Writing – review & editing; **Sarah E. Stutterheim**: Conceptualization, Writing – original draft, Writing – review & editing.

## Disclosure statement

No potential conflict of interest was reported by the author(s).

## ORCID

Maaike A. J. Noorman http://orcid.org/0000-0001-9839-9766

Kim A. G. J. Romijnders http://orcid.org/0000-0002-1491-3826

Sarah Lefebvre http://orcid.org/0009-0003-5999-6930

Jillian S. Y. Lau http://orcid.org/0000-0002-6797-4307

Virginie L. Bakeroot http://orcid.org/0000-0002-8875-2324

Jennifer Power http://orcid.org/0000-0002-6566-3214

Christel Protiere http://orcid.org/0000-0002-5602-9617

Sarah E. Stutterheim http://orcid.org/0000-0001-9336-5022

John B. F. de Wit http://orcid.org/0000-0002-5895-7935

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