Introduction
Where there is life, there are viruses. Viruses have probably existed since the beginning of humankind. Many have come and gone and returnedâinfluenza, smallpox and COVID-19 are just three of many millions of viruses on the planet. Human immunodeficiency virus (HIV) is undoubtedly one of the most unique, complex and deadly viruses that humankind has known. In the relatively short period in which it has existed, HIV has infected 74.9 million and killed 32 million people around the world. Moreover, HIV has brought about the stigma, isolation and ostracisation of those it has infected and affected. The short history of HIV has been characterised by hope and despair, as the condition has transformed from being life-limiting to life-changing. It has forced society and political institutions to confront pressing polemical issues, such as sexuality, morality and human rights, in novel ways. It is a condition that generates fear in some and indifference in others. HIV is changing both medically and sociallyâas more effective treatments emerge, societal perceptions of the condition are shifting. In the era of ever-improving antiretroviral therapy (ART), the ways in which individuals think about, and behave in relation to, HIV are similarly in flux.
Though a human immunodeficiency virus, some groups in society have been disproportionately affected by HIV. Acquired Immune Deficiency Syndrome (AIDS), which is late-stage HIV, was first observed in gay men who remain one of the most affected groups in Western, industrialised countries. Epidemics were later observed in intravenous drug users, heterosexual Haitians and sex workers, and HIV affects up to 25% of (mainly heterosexual) adult populations in some African countries. Yet, the association of HIV with gay men, in particular, is entrenched in societal thinking. HIV affects so many groups in society and, on both clinical and psychosocial levels, it affects these groups differently.
Today many people continue to die of AIDS when the communities in which they are embedded refuse to acknowledge HIV, stigmatise it and prohibit any discussion about the condition. In these communities, there is often very limited access to social or clinical support. The burden of HIV falls most heavily on the most marginalised groups in society, highlighting the usual fault lines of socioeconomic inequality. It is imperative to support those who are most affected, as many in these often marginalised communities feel stigmatised, disempowered and isolated. In this book, we highlight some of the remaining barriers to ensuring that all of those affected obtain access to effective clinical and psychological support.
This book focuses on the clinical and social psychological aspects of HIV among gay men. Gay men in Britain constitute a heterogeneous communityâin terms of ethnicity, religion, social class and many other factorsâwith a rich history. Gay men have been around for a long time indeed, even though their presence has not always been explicitly acknowledged. They have faced, and continue to face, social, political and psychological ups and downs. Before delving into some of these challenges, it is advantageous to provide some definitions at the outset. After all, HIV, gay men, social psychology and clinical medicine have all been written about from distinct disciplinary, theoretical and epistemological perspectives. We must ensure a common understanding of these issues, which are discussed in the rest of this volume.
Some Definitions
HIV Risk or HIV Outcomes?
In this book, we focus both on HIV risk and on the experience of living with HIV, including clinical outcomes among those living with the condition. The principal aim is to understand the factors that can increase gay menâs risk of HIV so that suitable interventions may be developed in order to mitigate these risk factors, that is, to reduce the incidence of HIV in this key population. Moreover, a key objective of this volume is to discuss the feasibility of Britainâs target to achieve zero HIV infections by 2030.
Yet, we acknowledge that much existing research, theory and practice have focused on the prevention of HIV and sometimes neglected the identities, lives and wellbeing of people living with diagnosed HIV. It is important to examine the lives of people living with HIV in order to develop effective strategies and interventions for safeguarding their physical and psychological wellbeing. HIV medicine has advanced significantly to facilitate a good clinical prognosis for most people who are diagnosed early. We describe the ways in which the benefits of HIV medicine can be fully exploited.
It must also be acknowledged that the success of our HIV prevention efforts is dependent partly on the wellbeing of people living with HIV. After all, people living with HIV must first be tested and diagnosed in order for them to initiate ART. They must subsequently engage with HIV clinical care in order to acquire ART. And they must adhere to ART in order for treatment as prevention (TasP) to be a viable HIV prevention strategy (Maatouk & Jaspal, 2020a). Often, the reasons to test, be treated, and to adhere to ART are social psychological in origin.
The Focus on Gay Men
In this volume, we focus on gay men because this heterogeneous group remains disproportionately affected by HIV in Britain and other Western societies (see Chap. 2). This is not to say that other groups in society, such as bisexual men and women, trans women, cisgender women and heterosexual men, should not constitute the focus of HIV research. These too are important research foci. It is hoped that research into these communities will continue. However, these communities are not the focus of the present volume.
What exactly do we mean by âgay menâ? To address this question, it is important to note that there is a difference between sexual orientation and sexual identity. Sexual orientation can be thought of âas a trait that predisposes an individual to experience sexual attraction to people of the same sex (gay), to people of the opposite sex (heterosexual), or to people of both sexes (bisexual)â (Jaspal, 2019, p. 19), while sexual identity refers to âthe individualâs subjective perception, appraisal and categorisation of their sexual orientationâ (p. 39). The two categoriesâsexual orientation and identityâare often aligned in that individuals tend to identify in a way that is consistent with their behaviour, but this is of course not always the case. For instance, a man may have sex exclusively with other men but regard himself as bisexual or even as heterosexual (e.g. Maatouk & Jaspal, 2020b).
A diverse range of categories have been used to describe sexual orientation and sexual identity, such as homosexual, gay, bisexual, heterosexual, straight and others. Many more categories have come into existence, and, undoubtedly, many more will be created to capture the nuances of oneâs sexual identity. In clinical research, the term âmen who have sex with menâ (MSM) tends to be used to focus not on sexual orientation or identity but rather on sexual behaviour. It is accepted that some men who define themselves as heterosexual are mostly heterosexual but occasionally have sex with other men. It is understood that the use of sexual identity categories (e.g. gay, bisexual) with which patients do not identify could lead to disengagement from healthcare services. Therefore, a focus on behaviour, rather than identity, obviates some of the challenging tensions between sexual orientation and identity.
The reality is that a separate volume could be written about the HIV epidemic among each sexual orientation/identity group. The risk factors and care outcomes of heterosexual men are quite different from those of gay men, and those of bisexual men are different still. The lived experiences of men who identify with each of these categories appear to differ. The level of stigma reported by bisexual men tends to be higher than that reported by gay men, for instance (Shilo & Savaya, 2012). In this volume, we focus principally on gay men, that is, same-sex attracted men who define themselves as gay. In Britain and other Western societiesâthe geographical focus of this volumeâthe vast majority of same-sex attracted men do self-identify as gay, have some level of involvement in what can loosely be described as âthe gay communityâ and exhibit some elements of shared experience. Most of the observations made in this volume are applicable principally to gay-identified men but may also be transferable to other groups of same-sex attracted men who do not identify as gay. When we discuss research into other groups of same-sex attracted men, such as bisexuals and other men who have sex with men, we make this clear.
Clinical and Social Psychological Aspects
In the title of this volume, we refer to clinical and social psychological perspectives. This is rather unusualâmost volumes remain cautiously within the confines of one discipline. However, we believe that the clinical and social psychological dimensions of HIV go hand in hand. There will be only limited success in clinical care if we fail to understand the social and psychological worlds of patients, and the full potential of social psychological research into HIV cannot be fully exploited unless applied to real-world clinical contexts. This book aims to bridge these disciplinary perspectives, examining their convergences, divergences and the creative solutions that they can generate when used in conjunction.
Clinically, HIV is now a long-term manageable chronic disease. Exceptionally high levels of mortality and morbidity were the norm before the advent of effective ART, devastating many communities globally. There was an especially profound impact on gay communities in major cities. From a clinical perspective, the development of effective ART has been nothing short of life-saving for those living with HIV. Moreover, evidence showing that virally suppressed patients cannot pass HIV onto their sexual partners has been life-changing for patients (Tan, Lim, & Chan, 2020). The majority of those living with HIV in the UK are now on effective ART and are at low risk of potentially fatal opportunistic infections and of infecting others.
We must look at the wider picture which involves identifying and resolving a range of psychological sequelae from HIV. This not only includes mood disorders and anxiety (which are disproportionately high in this group), substance use (which is particularly important in the context of âchemsexâ for gay men) including smoking and alcohol, but also the debilitating stigma that can impede access to clinical care and indeed to ART. Therefore, the clinical perspective espoused in this volume focuses on elucidating the social and psychological issues that can inhibit or undermine clinical health, including physical, psychological and social outcomes.
HIV affects people at multiple levelsâindividually, socially, politically, institutionally and so on. It is both an individual and public health concern. Social psychology is essentially the study of how the individual interacts with the social worldâhow the individual thinks, feels and behaves is understood to be shaped by society (Jaspal & Breakwell, 2014). Social psychology could be thought of in terms of the meeting-point between sociology (the study of societal structure) and psychology (the study of individual cognition and behaviour). Theories from social psychology enable us to understand, and sometimes to predict, individual thinking, social influence processes, interpersonal relationships and aspects of group behaviour.
As demonstrated repeatedly throughout this volume, these are important foci for the researcher interested in HIV. Social psychologists have a long-standing interest in addressing societal challenges which involve individual cognition. The HIV epidemic is undoubtedly one such challenge, and the ambitious zero-infections target is one that requires a multi-level response. A variety of methods are used in social psychology research to understand the ways in which people think and behave and, crucially, to predict how they will think and behave in particular contexts. Evidently, the ability to understand and to predict HIV risk awareness and behaviour is an important tool in HIV prevention, while the capacity to understand and predict engagement with care and adherence to ART will be vital for enhancing HIV care.
Case Studies
It is useful to begin our discussion of HIV among gay men by describing case studies that exemplify some of the social, psychological and clinical challenges confronted by gay men in the twenty-first century. It is similarly useful to consider how these challenges are in turn associated with HIV, that is, how they might increase oneâs risk of infection or oneâs risk of poor HIV outcomes. These case studies are intended to illustrate our rationale for focusing on the clinical and social psychological aspects of HIV among gay men, in particular. The cases are real but the individualsâ names have been changed to prevent identification.
Case Study 1: Rob, an HIV-Negative White British Gay Man
Rob is a 23-year-old White British gay man ...