HIV and identity: the experience of AIDS support group members who unexpectedly tested HIV negative in Uganda

Living with HIV, for many of those infected, has meant adjusting to life with a stigmatised condition and, until recently, the threat of looming death. We explore the adjustment of a group of long-term former clients of The AIDS Support Organisation (TASO) in Uganda who, when tested for HIV during the rollout of antiretroviral therapy in 2004, were found to be HIV negative. In-depth semi-structured interviews with 34 former TASO clients were conducted between 2005 and 2007. Their narratives reveal a great deal about the biographical disruption they have faced, and the biographical work that they have undertaken in both the personal and the social dimensions of their lives in order to manage their new-found HIV-uninfected status. After the negative test result, as they were no longer HIV-infected, they had to leave TASO and that support was sorely missed, as was the friendship of TASO members to whom they often felt reluctant to disclose their new status. The identity 'reversal' or change was often handled privately. Compared with their transition to an HIV-positive identity, they now lacked a social dimension to their identity transformation as they managed their new identity in the face of self- and public doubt.     

“Cloud chasers” and “substitutes”: e‐cigarettes,vaping subcultures and vaper identities

The use of e‐cigarettes is increasing, a practice denoted as vaping. We explore user motives, self‐identity as vapers and involvement in vaping subcultures, drawing on sociological theory of stigma, subcultures and symbolic boundaries. Based on analyses of semi‐structured interviews with 30 Norwegian vapers, we find that there is a vaping subculture in Norway. We identify two dominant vaper identities. The first is labelled cloud chasers. These were dedicated vapers who identified with symbols and values in the subculture. Many were politically engaged in improving vaping regulation regimes and felt a sense of belonging to a vaping community. The second group is labelled substitutes. These were former daily smokers who used e‐cigarettes for smoking cessation in a more pragmatic and defensive manner, to avoid health risks, to escape the stigma of smoking and to manage nicotine addiction. In this group, self‐identity as a vaper was generally lacking. Vaping was often symbolically linked to the stigmatised smoker identity they wanted to escape, and was restricted to private contexts. The perceived symbolic meaning of e‐cigarettes varies: for some, they are a symbol of pleasure and community. For others, they connote the stigmatised status of the addicted smoker seeking an alternative to cigarettes.     

Stigma,sex work,and substance use: a comparative analysis

Stigma is a widely used concept in social science research and an extensive literature claims that stigmatisation contributes to numerous negative health outcomes. However, few studies compare groups that vary in the extent to which they are stigmatised and even fewer studies examine stigma's independent and mediating effects. This article addresses these gaps in a comparative study of perceived stigma and drug use among three low‐income feminised service occupations: sex work, food and alcoholic beverage serving, and barbering and hairstyling. An analysis of longitudinal data shows positive associations between sex work, perceived stigma, and socially less acceptable drug use (for example, heroin and cocaine), and that stigma mediates part of the link between sex work and the use of these drugs. Our overall findings suggest that perceived stigma is pronounced among those who work in the sex industry and negatively affects health independently of sex work involvement.     

Anorexic dis(connection): managing anorexia as an illness and an identity

This paper explores the ways in which young women 'manage' the complexities of the presentation of an anorexic identity, the stigma attached to it, and the relationships that are developed with fellow sufferers. A range of ethnographic data and 'voices' are drawn upon, including a small qualitative study within a leading centre in the UK for the treatment of eating disorders. The paper begins by outlining the ways in which for many young women, anorexia is a stigmatised identity which in various contexts comes to be perceived as an irrational and self-inflicted condition. It was reported by the young women in our study that many of their peers, families and teachers made sense of their eating disorder through a medicalised discourse which focused on visual aspects of weight gain/loss and often stigmatised the condition, reducing it to a position of pathology or irrationality. It is argued that these experiences form a type of 'discursive constraint' (Ronai 1994) which many of the young women attempt to resist by engaging with alternative contexts and relationships through which they can construct more positive self-representations of anorexia or anorexic identities. As is revealed through the various data sources, as these young women negotiate the various discourses which offer them alternative subjectivities, they come to manage anorexia as both an illness and an identity.     

Are drug treatment services only for ‘thieving junkie scumbags’? Drug users and the management of stigmatised identities

This article uses qualitative interviews with 53 problematic drug users who had dropped out of treatment in England, UK to explore how they describe the stigmatisation of drug users and drug services. It discusses the construction of the category of the junkie through its association with un-controlled heroin use and criminality. It shows how some drug users carefully manage information about their discreditable identities by excluding themselves from this category, while acknowledging its validity for other drug users. The junkie identity was generally seen as shameful and therefore to be avoided, although it holds attractions for some drug users. For many of the interviewees, entry to treatment risked exposing their own activities as shaming, as they saw treatment as being a place that was populated by junkies and where it becomes more difficult to manage discreditable information. The treatment regime, e.g. the routine of supervised consumption of methadone, was itself seen by some as stigmatising and was also seen as hindering progress to the desired 'normal' life of conventional employment. Participation in the community of users of both drugs and drug services was perceived as potentially damaging to the prospects of recovery. This emphasises the importance of social capital, including links to people and opportunities outside the drug market. It also highlights the danger that using the criminal justice system to concentrate prolific offenders in treatment may have the perverse effects of excluding other people who have drug problems and of prolonging the performance of the junkie identity within treatment services. It is concluded that treatment agencies should address these issues, including through the provision of more drug services in mainstream settings, in order to ensure that drug services are not seen to be suitable only for one particularly stigmatised category of drug user.     

Adding insult to injury: workplace injury in English professional football

Sociologists studying the topic of workplace injury have neglected professional athletes despite the fact that, for such employees, remaining 'active' at work is of paramount importance. This study involved semi-structured interviews with 47 current and former male professional footballers who all had careers in the English professional football leagues. The interviews focused on the players' experiences of injury and rehabilitation and their relationships with club managers, physiotherapists and doctors. The object of this empirical article concerns an examination of how professional footballers become, or perceive themselves as being, stigmatised when they are injured or in pain. For players, the social conditions of work, for example the internal competition for places, all have implications with respect to their presentation of self when they are claiming to be injured or in pain. The often conflict-ridden relations between players and managers, combined with a culture that normalises pain and injury, means that players often find themselves in health-compromising situations. Thus, examining this highly physical vocation provides an opportunity to add to the literature in which injury at work is socially produced through interpretive social interaction.     

Drinking and working in a cantina: misrecognition and the threat of stigma

Poor women are often compelled to accept jobs that jeopardise their health and their social reputations. Cantineras are recently immigrated Latinas employed in working-class Latino bars (cantinas) where they are hired as waitresses to earn sales commissions from beer purchased for them by male clients seeking female companionship. Narratives solicited from 31 cantineras revealed the work subculture of local cantinas, where drinking is a primary work obligation and where men expect sexual favours as a quid pro quo for beers they buy. This paper describes strategies that cantineras adopt to downplay their drinking and to disguise sex-trading practices. This distortion or 'misrecognition' of work-related practices functions to manage cantineras' fear of being stigmatised as workers and devalued as individuals. We argue that misrecognition in this context represents more than simple attempts at denial or to uphold a public image. Rather, it is a strategy employed by cantineras in order to function adaptively under oppressive work circumstances. Confronting stigma leads cantineras to adopt social and cognitive strategies that, while minimising social damage in the near term, can lead to devastating health and social consequences over time.     

Drinking and working in a cantina: misrecognition and the threat of stigma

Poor women are often compelled to accept jobs that jeopardise their health and their social reputations. Cantineras are recently immigrated Latinas employed in working-class Latino bars (cantinas) where they are hired as waitresses to earn sales commissions from beer purchased for them by male clients seeking female companionship. Narratives solicited from 31 cantineras revealed the work subculture of local cantinas, where drinking is a primary work obligation and where men expect sexual favours as a quid pro quo for beers they buy. This paper describes strategies that cantineras adopt to downplay their drinking and to disguise sex-trading practices. This distortion or ‘misrecognition’ of work-related practices functions to manage cantineras' fear of being stigmatised as workers and devalued as individuals. We argue that misrecognition in this context represents more than simple attempts at denial or to uphold a public image. Rather, it is a strategy employed by cantineras in order to function adaptively under oppressive work circumstances. Confronting stigma leads cantineras to adopt social and cognitive strategies that, while minimising social damage in the near term, can lead to devastating health and social consequences over time.     

Different stage, different performance: the protective strategy of role play on emotional health in sex work

This paper uses Arlie Hochschild's (1983) concept of emotion management and "surface" and "deep acting" to explore how sex workers separate and distance themselves from their public role. Experiences of stigmatisation prevail among sex workers and how stigma is resisted or managed has an impact on their health. In-depth interviews were carried out between August 2006 and April 2007 with 58 sex workers in five cities in New Zealand following decriminalisation of the sex industry. Most participants drew on ideas of professionalism in sustaining a psychological distance between their private and public lives. They utilised "deep acting", transmuting private experiences for use in the work environment, to accredit themselves as professional in their business practices. They also constructed different meanings for sex between public and private relationships with the condom providing an important symbol in separating the two. A few (mostly female street-based) participants were less adept at "deep acting" and relied on drugs to maintain a separation of roles. This paper argues that in an occupation which is highly stigmatised and in which depersonalisation as an aspect of burn-out has been reported as a common occurrence, the ability to draw on strategies which require "deep acting" provides a healthy estrangement between self and role and can be seen as protective. The separation of self from work identity is not damaging as many radical feminists would claim, but an effective strategy to manage emotions. Hochschild, A. (1983). The managed heart: Commercialization of human feeling. Berkeley: University of California Press.     

Online dating and mating: Perceptions of risk and health among online users

In this paper, we examine the behaviours and experiences of people who use online dating and how they may or may not address risk in their use of online dating. Fifteen people who used online dating took part in in-depth, online chat interviews. We found that online daters use a variety of methods for managing and understanding the risks they perceived to be associated with online dating. Online daters compared the risks of online dating with other activities in their lives to justify their use of the medium. Many felt self-confident in their personal ability to manage and limit any risks they might encounter and, for some, the ability to be able to scapegoat risk (that is to blame others) was a method by which they could contextualize their own experiences and support their own risk strategies. For many, the control offered by the online environment was central to risk management. Additionally, the social context in which an individual encountered a potential risk would shape how they perceived the risk and responded to it. People who use online dating do consider the risks involved and they demonstrate personal autonomy in their risk management. From a public health perspective, it is important to understand how risk is experienced from an individual perspective, but it is imperative that any interventions are implemented at a population level.     

How children and young people construct and negotiate living with medical technology

Increasing numbers of children need the support of medical technology for their survival and wellbeing, yet little is known about their experiences of living technology-assisted lives. This study aimed to explore how this group of children experience and construct medical technology and its influence on their identity and social relationships. Using a Grounded Theory approach, 28 children/young people aged between 8 and 19 years old and using different types of medical devices were recruited via nursing services in England. Data were collected by in-depth interviews conducted in children's homes. The medical technology occupied an ambivalent position in children's lives being seen as having both an enabling and disabling presence. Children actively engaged in work to incorporate the technology into their lives and bodies by developing strategies to manage their condition, the technology and their identities. This body work appeared to be driven by a desire to 'normalise' their bodies and their lives. Technologies were shaped to integrate them into everyday life and children managed their self-presentation and controlled information about their condition. This work was ongoing, responding to changing social contexts and relationships. For these children the process of 'growing up' involves incorporating disability, illness and technology. This study contributes to knowledge by examining how medical technology is constructed by children whose lives are dependent on it and illuminating the resources and strategies they use to manage their identity and negotiate peer culture interactions and norms.     

What is wrong with ‘being a pill‐taker’? The special case of statins

In an interview study of decision‐making about statins, many participants said they took pills regularly, yet described themselves as ‘not really pill‐takers’. This paper explores this paradox and its implications. The practice of pill‐taking itself can constitute a challenge to the presentation of moral adequacy, beyond the potential for rendering stigmatised illnesses visible. Meeting this challenge involves a complex process of calibrating often‐conflicting moral imperatives: to be concerned, but not too concerned, over one's health; to be informed, but not over‐informed; and deferential but not over‐deferential to medical expertise. This calibration reflects a broader tension between rival tropes: embracing medical progress and resisting medicalisation. Participants who take statins present them as unquestionably necessary; ‘needing’ pills, as opposed to choosing to take them, serves as a defence against the devalued identity of being a pill‐taker. However, needing to take statins offers an additional threat to identity, because taking statins is widely perceived to be an alternative strategy to ‘choosing a healthy lifestyle’. This perception underpins a responsibilising health promotion discourse that shapes and complicates the work participants do to avoid presenting themselves as ‘pill‐takers’. The salience of this discourse should be acknowledged where discussions of medicalisation use statins as an example.     

How intersectional constructions of sexuality,culture, and masculinity shape identities and sexual decision-making among men who have sex with men in coastal Kenya

Men who have sex with men are increasingly recognised as one of the most vulnerable HIV risk groups in Kenya. Sex between men is highly stigmatised in Kenya, and efforts to provide sexual health services to men who have sex with men require a deeper understanding of their lived experiences; this includes how such men in Kenya construct their sexual identities and how these constructions affect sexual decision-making. Adult self-identified men who have sex with men (n = 26) in Malindi, Kenya, participated in individual interviews to examine sociocultural processes influencing sexual identity construction and decision-making. Four key themes were identified: (1) tensions between perceptions of ‘homosexuality’ versus being ‘African’, (2) gender-stereotyped beliefs about sexual positioning, (3) socioeconomic status and limitations to personal agency and (4) objectification and commodification of non-normative sexualities. Findings from this analysis emphasise the need to conceive of same-sex sexuality and HIV risk as context-dependent social phenomena. Multiple sociocultural axes were found to converge and shape sexual identity and sexual decision-making among this population. These axes and their interactive effects should be considered in the design of future interventions and other public health programmes for men who have sex with men in this region.     

Becoming a caregiver: attachment theory and poorly performing doctors

Medical Education 2010: 44 : 125–131 Context In this paper, I review a theoretical paradigm (attachment theory) which facilitates an understanding of how human care‐giving and care‐eliciting behaviours develop and are maintained over the lifespan. I argue that this paradigm has particular utility in: (i) the training of doctors; (ii) understanding why some doctors and medical students experience high levels of stress, and (iii) developing interventions to help those who struggle to manage high levels of work‐related stress. Methods I carried out a review of key texts and previously published studies of attachment styles in caregivers. Results Large‐scale epidemiological studies, using valid and reliable measures, show that insecure attachment styles are found in a proportion of normal populations of both males and females. Insecure attachment is associated with impaired stress management and subtle deficits in care‐giving sensitivity. It is reasonable to assume that a proportion of students entering medical training and doctors with performance problems may have insecure attachment styles which influence how they approach their training experience and how they manage occupational stress. Conclusions Attachment theory is a useful paradigm for thinking about training as a professional caregiver. Insecure early attachment experiences may be a risk factor for poor stress management in some medical students and doctors who are exposed to increasing demands as carers. These findings lead to suggestions for possible research and support interventions.     

Courtesy stigma: a hidden health concern among front-line service providers to sex workers

Courtesy stigma, also referred to as 'stigma by association', involves public disapproval evoked as a consequence of associating with a stigmatised individual or group. While a small number of sociological studies have shown how courtesy stigma limits the social support and social opportunities available to family members of stigmatised individuals, there is a paucity of research examining courtesy stigma among the large network of people who provide health and social services to stigmatised groups. This article presents results from a mixed methods study of the workplace experiences of a purposive sample of workers in a non-profit organisation providing services to sex workers in Canada. The findings demonstrate that courtesy stigma plays a role in workplace health as it shapes both the workplace environment, including the range of resources made available to staff to carry out their work activities, as well as staff perceptions of others' support. At the same time, it was evident that some workers were more vulnerable to courtesy stigma than others depending on their social location. We discuss these results in light of the existing literature on courtesy stigma and conclude that it is an under-studied determinant of workplace health among care providers serving socially denigrated groups.     

Neither ‘foolish’ nor ‘finished’: identity control among older adults with HIV in rural Malawi

Prevalence of HIV after age 50 is considerable, especially in southern Africa. Negative social constructions of HIV in older age, and the health consequences of ageing with the virus, mean that having HIV presents a challenge for many people's roles and social memberships, threatening to disrupt their sense of self. Using constructivist grounded theory and qualitative data from rural Malawi, this paper describes how older men and women deal with these identity challenges. Drawing on a symbolic interactionist framework, it uses identity control theory to explore how the study's participants presented their post‐diagnosis behaviours in ways that maintained their most significant pre‐diagnosis identities as ‘adults’, a label they gave to the core identity of being a person who belongs in the social world. Considering the processes through which older people with HIV navigated challenges to their identities in light of the intersectional influences of HIV and age‐related stigma and illness, provides insight into how older people might experience HIV, as well as informing theoretical understandings of identity formation and maintenance in light of chronic and/or stigmatising illness more broadly.     

Engaging conceptions of identity in a context of medical pluralism: explaining treatment choices for everyday illness in Niger

This article uses ethnographic research to reflect upon how the treatment of ‘everyday’ illnesses in Niger engages concepts of social identity. Inspired by Bourdieu's concept of social distinction, as well as Appadurai's edited volume on the ‘social lives’ of ‘things’, I present an analysis of how medications are understood by their users in terms of social and ideological meaning in one rural Hausa village. Decisions about medication choice were framed by three main themes: belonging to the ‘modern’ world, ‘traditional’ Hausa culture, and religious identity. This article does not argue that these notions of identity fully explain medication use, nor necessarily predict treatment choices. The purpose of this paper is to reflect on the dynamic meanings given to treatment decisions after they have been made, attributed to the medications themselves and negotiated through their circulation in a context where multiple medical systems are drawn from to manage illness. Producers and sellers of medication also engage these meaning‐centred concepts, which have theoretical and practical interest for the social sciences and public health. A virtual abstract for this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA     

Hidden caring,hidden carers? Exploring the experience of carers for people with long‐term conditions

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain ‘hidden carers’. We aimed to explore how carers of people with common long‐term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term ‘carer’ or access for support. We conducted semi‐structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared‐for person. The data were interpreted in terms of types of ‘work’ undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring ‘work’. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self‐management of LTCs in the community must be complemented by recognition of this group as potentially ‘hidden carers’, who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.