Interactive documentaries and health: combating HIV-related stigma and cultural trauma

Interactive documentaries have been growing in number and importance on the international scene in numerous fields and markets. Interactive documentaries entered the field of health about a decade ago, and since then they have proven to be a worthwhile tool for exploring various health issues, such as living with HIV. More recently, experts and academics have started to explore interactive documentaries dealing with a newly emerging topic: stigma. Stigma can be defined as the establishment of a “mark” or characteristic identified as deviant and rejected by society. Stigma has negative consequences in every aspect of a person’s life. When it comes to health, people with stigmatised conditions have the worst outcomes, a problem ultimately related to their own power and agency. There are many sources of stigma, but the structural sources are the least studied and have the biggest impact on health. The media and culture are two of these structural sources of stigmatization, and cultural trauma has been suggested as one of its mediators. This study seeks to examine interactive documentaries as a tool for raising awareness of the impact of HIV-related stigma and cultural trauma. To this end, it analyses two interactive documentaries, Vertical/Horizontal and The Graying of AIDS , focusing on the device, narrative, and textual elements used by these documentaries to deal with the impact of stigma in health, and elaborating on how these filmic pieces represent people living with stigma and whether that representation challenges or reinforces stigmatization.

that identity and health are inextricably entwined (e.g. Haslam et al., 2009). Healthy itself often becomes an identity, and messages about what it means to be a healthy person pervade health campaigns. It is therefore essential to take a comprehensive approach to identity to more fully understand its role in health (Hecht and Choi, 2012). Health communication is the study of how communication and health are related. In this sense, scholars in health communication study everything from how to build effective campaigns to how to understand the effect that culture and media consumption have on health identities.
Film is one of these media, and more and more frequently many filmmakers are working especially documentary films that address health issues and help to healing processes.
There are film festivals devoted to mental health recoveries (Quinn et al, 2011), films addressing health at work (Mendes, dos Santos and Ichiwaka, 2017), and motivational films to quit smoking (Brown et al, 2016). Nevertheless, one important factor to make these films effective is that their production process is open to participation and interactivity. For that reason, a growing number of scholars are studying how participatory ways and practices of communication can be used as form of intervention in healing processes or to influence in modifying harming identifications (Parr, 2007;Lingard et al, 2015).
In recent years, many film producers have undertaken projects in which user-generated content, shared authorship, public commitment, and collective participation constitute the pivotal elements of the production process (Shaw and Robertson, 1997: 2-23). As Nico Carpentier (2011: 68) suggests, "participation in the media deals with participation in the production of media output (content-related participation) and in media organizational decision-making (structural participation). These forms of media participation allow citizens to be active in one of the many (micro-)spheres relevant to daily life, and to put into practice their right to communicate." Participation in filmmaking has taken many forms, and when it comes to documentary making, one of the most popular are interactive documentaries. These films, which are also referred to as digital documentaries or web documentaries, are characterised by "disseminated authorship and a surrender of control over the narrative discourse" (Guifreu Castells, 2013: 124-125;Chio, 2009). This research sets out to analyse interactive documentaries that are designed to address one specific health issue: HIV-related stigma.

Interactive documentaries: definition and characteristics
Defining what is understood by documentary is a complex and tangled discussion. But in order to establish an operative definition for interactive documentary, it is necessary first to reflect on the most important definitions of this film genre. Bill Nichols (2001), who bases his work on contemporary film theory drawing from the Derridean revolution, defines the documentary from three perspectives. The first perspective relates to the filmmaker: a documentary is defined as a film in which the director possesses very limited control over the story; he or she can control the filming and the camera, but not the performance. The second perspective relates to the text: documentaries are audio-visual texts that depict places and people connected by a thematic and historical logic and, therefore, are structured by external textual elements. Finally, the third perspective relates to the spectator: the documentary generates the expectation that the status of the text bears a direct relationship with the real world and that, consequently, there is a congruence between the image shown and the historical fact to which it refers; thus, the documentary generates a desire for knowledge and the spectator views it with little expectation of identifying with characters or plot twists (Villanueva Baselga, 2015).
Based on the above, Nichols (2001) defines interactive documentaries as those that attempt to expose the perspective of the filmmaker. Thus, it is this type of film that most commonly includes interviews and in which the addition of the narrator's voice is not limited to post-production, as the filmmaker intervenes and can be heard on the scene of the events. This definition reflects a time when viewer participation through feedback mediated by technology was not yet a reality. When web-mediated interactivity began to intervene in the filmmaking process, interaction came to be understood as a trilateral relationship between filmmaker or author, viewer or spectator, and device (Almeida and Alvelos, 2010).
It is important to note that the cornerstone of an interactive documentary is not the use of web-based technologies, but the possibilities of interrelating and interconnecting the author and the viewers. In other words, not every documentary on a website is necessarily an interactive documentary. Aston and Gaudenzy (2012: 126) provide a technologyagnostic definition of interactive documentary as "any project with the intention to document the real and that uses digital interactive platforms." In the same line, Galloway, Mcalpine and Harris (2007: 328) define interactive documentary as "any documentary that uses interactivity as a core part of its delivery mechanism" and identify four categories for facilitating interaction within the filmic context: passive-adaptive, activeadaptive, immersive, and expansive. In this sense, the notion of interactive documentary logically extends that of the documentary and should always refer not to the technology it uses, but to the platform that mediates it. Aston and Gaudenzy (2012: 127) also point out that "interactivity is seen as a means through which the viewer is positioned within the artefact itself, demanding him, or her, to play an active role in the negotiation of the 'reality' being conveyed through the documentary's device should be analysed according to its platform, the physical actions it allows, and its level of openness. These three dimensions will be the ones surveyed when further analysing the interactive documentaries examined in this research.

Stigma and cultural trauma in health
As explained before, health has to do with identity. And identity is form by a myriad of dimension among which Gofman, in the early sixties, defined stigma (Gofman, 1963). There is growing evidence that stigma has harmful consequences on health that promote disparities between those who are stigmatized and those who are not. In this vein, a growing number of researchers are claiming that stigma should be considered a social determinant of health (SDH), a term defined by WHO (2008: 2) as "the conditions in which people are born, grow, live, work and age that have an impact on individual health." In consequence, dealing with stigma and developing policies that lead to its reduction among stigmatized groups is urgently needed to meet the objectives set by supranational organizations like the WHO, or the United Nations Sustainable Development Goals (SDG), especially SDG 3, "Good health and wellbeing". Major et al. (2018: 3) define stigma as "entirely contingent on access to social, economic, and political power that allows the identification of differentness, the construction of stereotypes, the separation of labeled persons into distinct categories and the full execution of disapproval, rejection, exclusion, and discrimination." Stigma can manifest mainly in two forms: (i) internalized stigma, which refers to an individual's own adoption, consciously or unconsciously, of the negative societal beliefs and feelings associated with his or her stigmatized status (Lee, Kochman, and Sikkema, 2002;Simbayi et al., 2010;Turan et al., 2017); and (ii) enacted stigma, defined as negative biases in feelings toward and evaluations of stigmatized groups and unfair treatment of those groups by healthcare professionals or the general public (Kinsler et al., 2007;Lekas, Siegel and Leider, 2011). While consequences of both internalized and enacted stigma have been analysed in depth, their causes have not been as extensively studied, mainly because there is still a lack of critical and theoretical frameworks and, specially, because there are few reliable methods for such studies. Pachankins et al. (2015) have systematically reviewed the most important advancements in the study of stigma and have shed light on questions yet to be answered. Among these, one of the most significant relates to the study of the sources of stigma, which are widely varied and to some extent difficult to characterize. Structural stigma, a term coined by Mark Hatzenbeuhler, is defined as "societal-level conditions, cultural norms, and institutional policies that constrain the opportunities, resources, and well-being of the stigmatized to which they are ubiquitously exposed" (Hatzenbeuhler, 2016: 744). In this sense, structural stigma is intertwined with how culture and media relate to health identities and how they shape collective forms of identification in the face of adverse health conditions. Based on this insight, Alexander (2004: 1) suggests that collective identities are constructed over cultural traumas, which are "horrendous events that leave indelible marks upon group consciousness, impacting memories forever and changing collective identities in fundamental and irrevocable ways." Cultural trauma is first and foremost an empirical, scientific concept, suggesting new, meaningful causal relationships between previously unrelated events, structures, perceptions, and actions. But this concept also sheds light on an emerging domain of analysis. It is by constructing cultural traumas that social groups not only cognitively identify the existence and source of human suffering but also take on board some significant responsibility for it (Sztompka, 2000;Kansteiner, 2004). In this sense, it has been theorized that cultural trauma even becomes interwoven with health identities when a community evolves out of a health situation, such as the HIV community (Hudnall Stamm et al., 2004;Gailienė, 2019;Shea et al., 2019). It is clear that the rapid expansion of the HIV epidemic in the 80s and 90s was a crisis of such dimensions that it has become a cultural trauma that has laid the foundations of the HIV community's collective identity. Hence, HIV cultural trauma could be revealed through an analysis of the representations of the disease in contemporary cultural productions. At this point one might question how stigma and cultural trauma might be connected, and the answer can be found in the history of HIV epidemic.

HIV and stigma: from the epidemic to the U=U strategy
Since the start of the epidemic, approximately 1,000,000 people have been diagnosed with HIV in the European Region, according to the World Health Organization (WHO). While the growth rate has declined, almost 80,000 new infections were reported in Western and Central Europe in 2017, and the prevalence of HIV in Europe will continue to increase in the foreseeable future as people living with HIV (PLWH) can now expect to have a normal lifespan. In 2014, the Joint United Nations Programme on HIV and AIDS (UNAIDS) and its partners launched the ambitious 90-90-90 targets for 2020 as a commitment to improve access to antiretroviral therapy (ART) as a life-saving treatment, a transmission prevention measure, and a human right. The first of the three targets is the successful diagnosis of 90% of all HIV positive people. Target two involves delivering ART to 90% of those diagnosed; and finally, target three is viral suppression for 90% of those on treatment (Levi et al., 2016). In 2017, 79% of PLWH in the European Region knew their status, out of which 79% were accessing therapy, and 81% of these were virally suppressed. This means that only 47% of all PLWH are virally suppressed and, thus, cannot transmit the virus (see the U=U strategy discussed below).
The UNAIDS 90-90-90 targets have required innovative, multidisciplinary strategies to diagnose, treat and promote adherence to antiretroviral drug prescriptions. However, this strategy is mainly directed towards biochemical solutions, and overlooks other important issues that PLWH face in their daily lives. As an example, PLWH have a 29% higher risk of reduced quality of life due to comorbid health conditions like cardiovascular disease, osteoporosis, and depression (Evans-Lacko et al., 2012) which can also affect their adherence to medication regimens (Markovitz et al., 2000;Gao et al., 2010) Previous studies have assessed the effectiveness of participatory communication methods in multiple contexts and with multiple aims, e.g. to reduce risky behaviours (Berger and Rand, 2008), to promote health in children (Grabowski, 2013), or in the field of HIV, to empower PLWH in adverse social contexts (de Lange, Olivier and Wood, 2008).
However, studies analysing tools such as interactive documentaries in health promotion are scarce. This study proposes a novel methodology for surveying whether interactive documentaries are effective audio-visual tools for tackling the structural stigma in communities affected by negative health identities.

Objectives and Methodology
In view of the above, the main objective of this study is to analyse how the device, narrative, and textual mechanisms of the interactive documentaries Vertical/Horizontal and The Graying of AIDS are articulated to unmask the stigmas associated with HIV and the cultural trauma associated with it. To do this, three secondary objectives are pursued: (1) to explore what operative aspects of interactive documentaries (platform, physical action, and degree of openness) are used to address disease stigmas and how they are articulated; (2) to interrogate these two interactive documentaries in terms of how they address and tackle the origins and dimensions (internalized and enacted) of health stigmas by connecting stories of individuals affected by or living with HIV; and (3) to analyse whether these interactive documentaries recreate the cultural traumas associated with HIV and the HIV epidemic in the 80s and 90s.
These two documentaries will be examined using a three-dimensional film analysis that pursues these three objectives. The first dimension will involve an analysis of the device with attention to the type of platform it uses and the nature of the user interface (UI), i.e., the physical actions that are required on the part of the spectator and the degree of openness to participation it possesses. The second will be an analysis of how the stigma associated with HIV is represented, discussed, and articulated through the voices of both the social actors and the narrators. The third will be an examination of whether the documentaries, through their interaction mechanisms, will expose the cultural trauma associated with HIV and the origins of the pandemic. In conclusion, the two documentaries will be examined following a three-dimensional analysis: device, stigma and cultural trauma (see Table 2 later on). Once an experience is initiated, a video is shown with no title or context and then the first screen presents four questions; for each question, one to four participants provide answers ( Figure 1B). Once a question and a testimony are chosen and the corresponding video is viewed, the user jumps to a new screen with four new questions and their corresponding testimonials. On each screen, the four questions are not related to the previous screen, and each time that a new experience is initiated, the questions are randomized. In this sense, there is no logical order or pathway that the viewer can choose to follow. In addition to the previous characteristics, it is worth noting that the 128 capsules are not accessible by any other means than through the app, even though each experience (that is, each sequence of answers) is saved in an archive that can be reviewed later, although it is not possible to search through the videos stored there. In consequence, in terms of the level of openness, users can neither search for content nor provide feedback, but they can generate their own narrative pathways. It can therefore be considered stigma is a specific topic of more than 30% of the questions, but it is not present on every screen. In addition, stigma is treated as a broad concept and framed only in relation to how people speak about HIV. In this sense, stigma is only understood as internalized stigma, while enacted stigma is not addressed. Moreover, the origins and sources of stigma are not exposed or examined.  2), and feedback can be provided via the website and on social networks. Based on this data, the interactive experience seems limited and the degree of openness might be considered semi-closed.  This study has proposed a novel methodology for surveying whether interactive documentaries are effective audio-visual tools for tackling the structural stigma in communities affected by negative health identities. It must be acknowledged, however, that more work needs to be done to expand this analysis to other interactive documentaries dealing with HIV, like HEALTHSMNET (already studied by Dobson and Ha, 2007), or to other health conditions highly affected by social stigma, such as mental health disorders. Nevertheless, the results obtained can be taken into account to explore and innovate in the ways participation and openness can be articulated when reflecting on stigma and cultural trauma in interactive documentaries, and can constitute a call to action for future filmmakers working in the field.