From activism to secrecy: Contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014

Abstract Background Successes in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition. Objective To explore how the contemporary metanarrative of HIV as a chronic condition is understood by patients and how it varies depending on when they were diagnosed. Design Qualitative interviews with 52 people living with HIV who were diagnosed during different phases in the history of the epidemic. Setting and participants Participants were recruited from two HIV clinics in London to include four “HIV generations”: generation 1 were those who had been diagnosed pre‐1997 (pre‐ART), generation 2 from 1997 to 2005 (complex ART), generation 3 from 2006 to 2012 (simpler ART) and generation 4 diagnosed in the year before the study (2013‐2014). Results Participants in all HIV generations took their medication as prescribed, attended clinic appointments and were well informed about their immunological biomarkers. While the pre‐treatment generation had been engaged in community endeavours such as activism, public education and use of support groups, those more recently diagnosed had little experience of collective activities and their HIV was essentially a private matter, separate from their social identity. These strategies worked for some; however, those experiencing clinical or social problems related to HIV or wider issues often relied exclusively on their HIV clinic for wider support. Conclusion The loss of public conversation around HIV, the imperative for patients to take on greater individual responsibility for HIV management and the streamlining of HIV services alongside reductions in ancillary support services may expose some people to suboptimal health outcomes.


| INTRODUC TI ON
Antiretroviral therapy (ART) development and the results from clinical trials have transformed the management of HIV and the organization of clinical services. It has become a showpiece for successful translational medicine. In the UK, newly diagnosed patients are encouraged to start ART immediately, and once stable on treatment are seen once or twice a year at a specialist HIV clinic. For all other medical support, patients are advised to visit their general practitioner (GP), who is expected to be aware of, and engaged with, their patients' HIV status and care. 1,2 Alongside scientific and clinical developments, the social relationships established in response to HIV infection have also changed. In the 1980s and early 1990s in the global north, HIV was the "killer" infection that brought people together into communities under siege. 3 Within the groups most affected (including gay men and African women), HIV served to mobilize and unite those facing the catastrophe together, albeit in different ways. There were few medical solutions, and therefore, social and psychological support was crucial. Social activism invoked principles of equal rights and global citizenship to draw public attention and institutional commitment towards universal access to care (and treatment when it came) for HIV patients. 4 Even individuals who did not ascribe to a common identity or community in relation to HIV (e.g. white heterosexuals, black men and people who inject drugs) gained access to a collective of doctors, nurses, health advisors, care workers, housing officers and volunteers who devoted their professional and often personal lives to providing palliative, psychological and practical support, as well as joining movements for social change. 5  Thanks to the success of ARTs, HIV has now been transformed from "death sentence to life sentence" (pp. 665-679). 7 The simplification and effectiveness of treatment mean that the infection is not necessarily life-shortening, 8 treatments have fewer side-effects, and, while on effective treatment, people with HIV do not transmit the virus to others. 9,10 These optimistic developments in HIV science beckon us to renounce the historical crisis response and replace it with efforts towards normalization, a process encompassing a shift away from historical AIDS exceptionalism and the reframing of HIV as chronic disease "like any other". 11 In Western Europe, access to ART is universal, with patients expected to act as partners, sharing responsibility to keep their viral load undetectable by early initiation and careful adherence to ART. It is therefore anticipated that they will become self-regulating, healthy citizens who are "biomedicine's partners in a normalized enterprise of survival, and as far as possible, healthy living" 12 (p. 8).
The streamlining of HIV care in the UK may also have an unintended effect of undermining or even silencing historical and continuing discussion on the social and psychological effects of HIV infection, its unequal distribution in terms of structural disadvantages and links with other health issues. 13,14 As HIV remains a socially pathologized and stigmatizing condition despite the great leaps in biomedicine, 11 it is likely that barriers will continue to hinder prevention, treatment, care and support. 15 In this study, we explore how the contemporary metanarrative of HIV as a normalized, chronic disease is understood and experienced by people living with HIV and ask whether it varies for people who were diagnosed at different points of the epidemic. People's experience of HIV differs by when they were diagnosed and also by their diverse backgrounds, treatment histories, overall health, comorbidities and social support. By including patients diagnosed at different points in the path towards effective HIV treatment, we aim to chronicle patient stories including how they have adapted to biomedical developments.

| ME THODS
We conducted a qualitative study of people attending two large London HIV clinics. Prior to starting the study, we conducted a focus group discussion in which six patients were invited (four attended) to discuss the topic guide, study design and approach and other issues that they felt were relevant to people living with HIV. Ethical approval was obtained from NRES (reference number 14/WM/0147) in May 2014, and research governance approval was obtained from the local sites.

| Sample and study design
Detailed recruitment and sampling methods are published elsewhere. 16 Briefly, we recruited 52 study participants from September 2014 to April 2015. To reflect the evolution of ART, we had identified four "HIV generations" on the basis of time of diagnosis: generation 1 were those who had been diagnosed pre-1997 (pre-ART), generation 2 from 1997 to 2005 (complex ART), generation 3 from 2006 to 2012 (simpler ART) and generation 4 diagnosed in the year before the study (2013-2014). Within each generation, we aimed to include people with a range of characteristics (such as age, sexual orientation, gender and ethnicity).
Although generations are not directly comparable-some have longer histories compared to others-it provided an opportunity to explore changes over time in terms of the physical, social and health service experience of living with HIV. Participants were recruited opportunistically by researchers attending clinical services and through fliers and digital screens advertising the study in clinical areas. Recruitment was periodically checked against the recruitment matrix whose primary function was to ensure similar numbers from the four HIV generations and diversity within each generation in terms of the above-mentioned demographics. There were no exclusion criteria, and under-represented strata/groups were targeted using clinic lists.
Study participants were provided with information about the study and gave written consent. Interviews took place in private rooms in or near the clinics or at the participant's home; they were recorded and transcribed and lasted between 60 and 90 minutes.
Interviews were semi-structured and carried out by four researchers (TR, JB and two others, see Acknowledgements) with open-ended questions within a topic guide designed to elicit study participants' experiences during their HIV "journey" from the time before diagnosis until the present. We asked them about their health, employment status, relationships and social networks; their relationship with clinicians and decision making regarding HIV-related matters; and about the role HIV played in their lives. We also asked for their views on taking ARTs (usually just one or two pills a day) and the reduced frequency of clinic appointments (among those immunologically stable). All audio recordings, field notes and transcription files were saved in an encrypted secure location on the university server, separate from consent forms and other identifying information.

| Data analysis
We analysed interview transcripts through a combination of framework and thematic analysis. 17,18 Open coding procedures carried out independently by TR and JB led to the identification of an initial set of codes that were loosely structured around the general areas of interest identified in advance and additional emergent themes.
Using an iterative process of multiple readings, coding, analyses and discussion, these themes were then modified, expanded or amalgamated to create a final coding frame which was then discussed with HW and SD and further analysed in relation to the existing literature.
The final framework was then applied across the data set, leading to more in-depth analysis where we synthesized coded data and explored relationships across themes and how they applied across different participants in the study sample. Data were managed using the software NVivo v9, (QSR international, Melbourne, Australia).

| RE SULTS
We recruited and interviewed 52 people, 25 at one clinic and 27 at the other. 16 Our sample comprised of 37 men who have sex with men (MSM), 4 heterosexual men and 11 women, one of whom was infected through injecting drug use, the rest through sex with men. All study participants, regardless of when they had been diagnosed, recognized HIV as a manageable, long-term condition.
Recently diagnosed participants had only experienced the care currently offered in HIV services, whereas those from earlier HIV generations had observed changes in services in the form of fewer appointments, seeing a nurse instead of a physician for some consultations, increased emphasis on self-management and a greater involvement of GPs in managing their overall health.

| Strategies for coping-then and now, together and alone
The experiences of those diagnosed in the pre-and early ART era, that is generations 1 and 2 of our sample, had been very different in the past, and they described a range of strategies which have almost

| Living normally-keep it to yourself
Along with becoming familiar with their HIV-related numbers, interviewees generally aimed to restrict HIV to the clinic and lived "normally" by concealing their status. We did not set out to explore disclosure, but participants across all generations described problems they had faced following HIV diagnosis and often felt more

| Difficult times
The fears for the future were exacerbated among the remaining quarter of our cohort, who were not coping particularly well due to some combination of HIV-related ill health, troubling comorbidities, mental health problems, domestic abuse or financial insecurity.
For these people, who spanned the generations, the longer clinic appointments immediately following diagnosis had provided an opportunity to talk freely and privately with sympathetic and non-  In doing so, it reduces "the 'social problem' of HIV to an individualized concern" 21 (p. 509). One theme that unified many accounts of our study participants (aside from generation 1) was isolation; they had largely experienced HIV alone. Other writers have noted how the rebranding of HIV from its original form as "an exceedingly public illness" 22  It was necessary to keep the secret in order to live as normally as possible…" (p. 74). 24 Goffman 25 observed that stigma is experienced differently according to how easy it is to conceal the stigmatizing attribute. If the associated attribute is visible (gender, ethnicity), individuals bearing the attribute are discredited; however, when it can be concealed (HIV, mental illness), individuals are discreditable. 25 Goffman's concept of passing describes the management of undisclosed discrediting information about the self. It allows people with a discreditable stigma to "pass" in public as though they were "normal." While modern management of HIV is associated with reduced discrimination as people generally look well, evidence is accumulating about significant psychological costs associated with the effort to maintain privacy. 26,27 The prevalence of psychiatric and psychological problems is significantly higher in those with HIV compared to the general population. 28 This process of hiding a condition largely precludes collective strategies and support and can lead to a vicious cycle: secrecy about HIV prevents positive collective action to change public perceptions of HIV and so, privately, those with HIV continue to suffer psychological morbidity, which in turn leads them to avoid public action. In addition to psychosocial issues, the intersection of HIV with other chronic health problems as people with HIV age has increased the need for social and sometimes disability services. However, concurrent structural changes in the provision of health and social care

| D ISCUSS I ON
have reduced access to appropriate support.

| Implications
People with HIV today live with more possibility and promise than

ACK N OWLED G EM ENTS
Thanks to the participants for sharing their time and stories, to Jane Rowlands and Chris Higgs for conducting some of the interviews and to the staff of both clinics for facilitating the study.

CO N FLI C T O F I NTE R E S T
All the authors of this manuscript declare they have no conflict of interest.