‘The world has changed’: pharmaceutical citizenship and the reimagining of serodiscordant sexuality among couples with mixed HIV status in Australia

In this article, I revisit the question of whether HIV can ever be reimagined and re‐embodied as a potentially non‐infectious condition, drawing on a current qualitative study of couples with mixed HIV status (serodiscordance) in Australia. Recent clinical trials have consolidated a shift in scientific understandings of HIV infectiousness by showing that antiretroviral treatment effectively prevents the sexual transmission of HIV. Contrary to common critiques, I explore how the increasing biomedicalisation of public health and the allied discourse of ‘normalisation’ can in fact de‐marginalise stigmatised relationships and sexualities. Invoking Ecks's concept of ‘pharmaceutical citizenship’, I consider whether the emerging global strategy of HIV ‘treatment‐as‐prevention’ (TasP) can open up new trajectories that release serodiscordant sexuality from its historical moorings in discourses of risk and stigma, and whether these processes might re‐inscribe serodiscordant sexuality as ‘normal’ and safe, potentially shifting the emphasis in HIV prevention discourses away from sexual practice toward treatment uptake and adherence.     

‘Betwixt and between’; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)

This paper explores experiences of 16 people claiming to have recovered from Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) using the concept of liminality. Liminality describes the status of those falling between socially recognised and medically sanctioned categories, and illuminates both the experience of illness and the process of recovery from ME/CFS. The liminality experienced during illness was akin to that described by Turner with a degree of communitas among sufferers. As recovery progressed, participants stressed the percentage to which they had improved, and compared themselves with peers and themselves prior to the illness. Recovery did not mean transition into a post‐liminal phase, but involved a new liminality, characterised by straddling boundaries between illness and wellness. Participants continued strategies such as rest, pacing and meditation. This second liminal state included difficulty in communicating the experience convincingly, and estrangement from the ME/CFS community. Thus, recoverees moved from the liminality of illness to a second, and less legible state of sustained liminality in recovery, described as having one foot in the ill world, one foot in the well world. This suggests that more needs to be understood about the recovery experience to assist those making the transition toward wellness.     

‘I'm not just a number on a sheet,I’m a person’: Domiciliary care,self and getting older

Social care funding is reducing in spite of a growing older population. Within this context, domiciliary services are increasingly failing to deliver care that respects the individuality and heterogeneity of older people. To date, there has been limited research in the U.K. that explores, from the older person's perspective, how care practices interact with self. Using biographical‐narrative methodology, this study takes a constructionist approach to understand the individual's lived experience of care and how it interacts with sense of self. A three‐stage model of data collection was used, beginning with a narrative biographic enquiry, exploring with participants (65 yrs +, n = 17) their journeys into care and any possible relationship to personal identity. Stage 2 involved a two‐week period of diary completion, with participants recording daily reflections on their care experiences. In stage 3, a semi‐structured interview explored the diary entries, linking back to the narrative biographic enquiry to reveal ways in which specific care practices interacted with the sense of self. The findings reveal that a strong relationship between older person and formal carer, forged through familiarity, regularity and consistency, plays a significant role in promoting feelings of autonomy. Furthermore, such relationship mediates against the loss of executional autonomy that often accompanies increasing disability. Maintaining autonomy and control was a recurring theme, including in relation to home, privacy and dignity. Feelings of autonomy are also promoted when formal carers understand the unique ways in which individuals experience ageing and being in the cared‐for relationship. This paper suggests that a care approach should be based on two tenets. First, a knowledge and insight into the importance of understanding and respecting the older person's continuing development of self, and second applying this knowledge to care through a positive, stable and consistent relationship between the older person and the carer.     

Antiretroviral therapy and changing patterns of HIV stigmatisation in Entebbe,Uganda

Antiretroviral therapy (ART) has the potential to change processes of HIV stigmatisation. In this article, changing processes of stigmatisation among a group of people living with HIV (PLWH) on ART in Wakiso District, Uganda, are analysed using qualitative data from a study of PLWH's self‐management of HIV on ART. There were 38 respondents (20 women, 18 men) who had been taking ART for at least 1 year. They were purposefully selected from government and non‐government ART providers. Two in‐depth interviews were held with each participant. Processes of reduced self‐stigmatisation were clearly evident, caused by the recovery of their physical appearance and support from health workers. However most participants continued to conceal their status because they anticipated stigma; for example, they feared gossip, rejection and their status being used against them. Anticipated stigma was gendered: women expressed greater fear of enacted forms of stigma such as rejection by their partner; in contrast men's fears focused on gossip, loss of dignity and self‐stigmatisation. The evidence indicates that ART has not reduced underlying structural drivers of stigmatisation, notably gender identities and inequalities, and that interventions are still required to mitigate and tackle stigmatisation, such as counselling, peer‐led education and support groups that can help PLWH reconstruct alternative and more positive identities. A video abstract of this article can be found at: https://youtu.be/WtIaZJQ3Y_8     

‘I'm just a walking eating disorder’: the mobilisation and construction of a collective illness identity in eating disorder support groups

The increasing visibility of support groups has prompted a flurry of sociological investigation, much of which explores how groups benefit participants. What researchers have failed to consider is the group itself. Bringing social movement theory to bear on the case of eating disorder support groups, this study seeks to explore how support groups attract and sustain adequate participation. Participant observation in an eating disorder support group reveals that broad diagnostic and prognostic frames, coupled with strong motivational framing and collective identification on the basis of a shared disordered self, promote support group participation. The very processes that enable support groups' successful mobilisation, however, simultaneously construct a collective illness identity, which in turn serves as the basis for participants' individual‐level identity work. More specifically, support group mobilisation processes construct eating disorders as highly consequential, highly symptomatic, chronic, rooted in the self, and uncontrollable. Such findings suggest that support groups may have unanticipated and potentially adverse consequences for participants and thus build on previous work highlighting the unintended health consequences of framing processes. Such findings further contribute to our understanding of how macro‐social forces shape illness experience.     

‘Your whole life is lived through your teeth’: biographical disruption and experiences of tooth loss and replacement

The experience and meaning of tooth loss and replacement has varied historically and culturally but has received relatively little attention from social scientists. Our study set out to understand these experiences in the context of the arrival of newer, dental implant treatments. Semi‐structured qualitative interviews were carried out with 39 men and women who had experienced tooth loss and replacement. A thematic analysis was sensitised by previous sociological work on chronic illness, particularly Bury's notion of biographical disruption. We found that while for some individuals the loss of a tooth was relatively insignificant, for others it was devastating and disruptive. In seeking to understand this difference, the concept of biographical disruption was a helpful analytical tool. Our analysis identified two forms of disruption. The first related to the meanings of tooth loss (the neglected mouth) and denture wearing (a marker of old age). The second, embodied, disruption concerned the relationship between the self and mouth in those wearing dentures (the invaded, unreliable mouth) and could occur even where tooth loss and denture wearing had been biographically anticipated.     

Health systems responsiveness among older adults: Findings from the World Health Organization Study on global AGEing and adult health

ABSTRACT

Health system responsiveness is an indicator that can be used for evaluating how well healthcare systems respond to people's needs in non-clinical areas such as communication, autonomy and confidentiality. This study analyses health system responsiveness from the perspective of community-dwelling adults aged 50 and over in China, Ghana, India, the Russian Federation and South Africa using cross-sectional data from the World Health Organization Study on global AGEing and adult health. The aim is to assess and compare how individual, health condition and healthcare factors impact differently on outpatient and inpatient responsiveness.

Poor responsiveness is measured according to participants’ responses to questions on a five-point Likert scale. Five univariate and multiple logistic regression models test associations between individual, health condition and healthcare factors and poor responsiveness. The final model adjusts for country.

Key results are that travel time is a major contributor to poor responsiveness across all countries. Similarly there are wealth inequalities in responsiveness. However no clear difference in responsiveness was observed in presentations for chronic versus other types of conditions.

This study provides an interesting baseline on older patients’ perceived treatment within outpatient and inpatient facilities in five diverse low- and middle-income countries.     

At the margins of biomedicine: the ambiguous position of ‘Registered Medical Practitioners’ in rural Indian healthcare

This analysis challenges a tendency in public health and the social sciences to associate India's medical pluralism with a distinction between biomedicine, as a homogeneous entity, and its non‐biomedical ‘others’. We argue that this overdrawn dichotomy obscures the important part played by ‘informal’ biomedical practice, an issue with salience well beyond India. Based on a qualitative study in rural Andhra Pradesh, South India, we focus on a figure little discussed in the academic literature – the Registered Medical Practitioner (RMP) – who occupies a niche in the medical market‐place as an informal exponent of biomedical treatment. We explore the significance of these practitioners by tracking diagnosis and treatment of one increasingly prominent medical ‘condition’, namely diabetes. The RMP, who despite the title is rarely registered, sheds light on the supposed formal‐informal sector divide in India's healthcare system, and its permeability in practice. We develop our analysis by contrasting two distinctive conceptualisations of ‘informality’ in relation to the state in India – one Sarah Pinto's, the other Ananya Roy's.     

‘It seems like you're going around in circles’: recurrent biographical disruption constructed through the past,present and anticipated future in the narratives of young adults with inflammatory bowel disease

Biographical disruption and related concepts continue to be widely drawn upon in explaining how individuals experience chronic illness. Through in‐depth examination of the narrative experiences of two young adults with inflammatory bowel disease (IBD), this article aims to contribute to the continuing theoretical elaboration of biographical disruption, and in turn offer new insights into how young adults experience this condition. The cases are analysed from an interaction‐based, constructionist perspective, through which it is argued that the relapse‐remission nature of IBD can give rise to a particular form of recurrent biographical disruption, constructed in narrative through a complex configuration of past, present and anticipated future experiences. The two young adults are found to give different meaning to this recurrent disruption in terms of its significance and consequences – whilst Samuel represents an ongoing cycle of profound disruption and biographical reinstatement, Edith normalises the cycle of disruption and its role in her ongoing biography. Therefore, moving beyond the notion of ‘normal illness’ observed in previous research literature, the concept of ‘normal recurrent disruption’ is proposed. Finally, it is argued that this recurrent biographical disruption may be experienced particularly severely in young adulthood owing to the unique pressures and expectations of this lifestage.     

HIV prevention among street‐based sex workers (SSWs) in Chongqing,China: interviews with SSWs,clients and healthcare providers

Street‐based female sex workers (SSWs) are subjected to a relatively high risk of HIV transmission, even higher than establishment‐based female sex workers in China. However, very few HIV intervention programmes have targeted this particular group to date. Based in Southwest China, this study aims to identify perceived barriers, demands and suggestions on HIV prevention from the perspectives of SSWs, clients and healthcare providers in Chongqing. Face‐to‐face, in‐depth interviews were conducted in July 2008 with 23 participants. They were recruited by purposive, convenience sampling and included 12 SSWs, 5 male clients, 4 government healthcare providers and 2 outreach workers from a community‐based non‐governmental organisation. Thematic analysis was used. SSWs were largely rural‐to‐urban migrants with a low socioeconomic status. Most of their clients shared a similar background. Both SSWs and their clients demonstrated a low awareness of HIV infection and a lack of understanding of effective preventive strategies. Financial hardships, lack of family support, fear of police arrest and stigma in relation to sex work were identified as SSWs’ major barriers for accessing healthcare services. Both SSWs and their clients indicated an urgent demand for accessing adequate HIV prevention and care programmes. On the other hand, government organisations trying to provide services to this group have also encountered obstacles, specifically their limited ability to establish mutual trust. Programmes provided by community‐based non‐governmental organisation, however, were perceived to be more attractive. In conclusion, there remains a substantial gap between the need of adequate HIV prevention services for SSWs and their clients and what is currently available. Strengthening inter‐sectoral collaboration, providing specifically tailored health services, actively involving SSW peers and their clients, and reducing stigma in the society are keys to meet this urgent demand by SSWs in China.     

‘You're just a locum’: professional identity and temporary workers in the medical profession

Internationally, there has been substantial growth in temporary working, including in the medical profession where temporary doctors are known as locums. There is little research into the implications of temporary work in health care. In this paper, we draw upon theories concerning the sociology of the medical profession to examine the implications of locum working for the medical profession, healthcare organisations and patient safety. We focus particularly on the role of organisations in professional governance and the positioning of locums as peripheral to or outside the organisation, and the influence of intergroup relationships (in this case between permanent and locum doctors) on professional identity. Qualitative semi‐structured interviews were conducted between 2015 and 2017 in England with 79 participants including locum doctors, locum agency staff, and representatives of healthcare organisations who use locums. An abductive approach to analysis combined inductive coding with deductive, theory‐driven interpretation. Our findings suggest that locums were perceived to be inferior to permanently employed doctors in terms of quality, competency and safety and were often stigmatised, marginalised and excluded. The treatment of locums may have negative implications for collegiality, professional identity, group relations, team functioning and the way organisations deploy and treat locums may have important consequences for patient safety.     

‘That would have been beneficial’: LGBTQ education for home‐care service providers

This paper reports qualitative findings from a pilot study that explored the lesbian, gay, bisexual, transgender and queer (LGBTQ) education needs of home‐care service providers working in one large, urban Canadian city. The pilot study builds upon research that has documented barriers to health services for diversely situated LGBTQ people, which function to limit access to good‐quality healthcare. LGBTQ activists, organisations and allies have underscored the need for health provider education related to the unique health and service experiences of sexual and gender minority communities. However, the home‐care sector is generally overlooked in this important body of research literature. We used purposeful convenience sampling to conduct four focus groups and two individual interviews with a total of 15 professionally diverse home‐care service providers. Data collection was carried out from January 2011 to July 2012 and data were analysed using grounded theory methods towards the identification of the overarching theme, ‘provider education’ and it had two sub‐themes: (i) experiences of LGBTQ education; and (ii) recommendations for LGBTQ education. The study findings raise important questions about limited and uneven access to adequate LGBTQ education for home‐care service providers, suggest important policy implications for the education and health sectors, and point to the need for anti‐oppression principles in the development of education initiatives.     

‘If I can walk that far’: space and embodiment in stories of illness and recovery

Illness and recovery transform embodied experience, and transform the experience of space. Space, in turn, is a valuable resource in the telling of an illness narrative. Starting from a phenomenological perspective that takes the body to be the centre of experience, and hence of selfhood and storytelling, this article offers an argument for and an approach to analysing space as a narrative resource in stories about illness and recovery. Using a case study of one woman's stories about her amputation, it demonstrates how both narrated space and narrating space can be used as devices to structure the narrative and position its characters and interlocutors to construct the narrator's embodied experiences and identities. The article reveals intersections between embodied experience, space, and narrative identity construction, offering a new way of attending to illness narratives and a new way of engaging with narrative space.     

‘You opened our eyes’: care‐giving after learning a child’s positive HIV status in rural South Africa

Caregivers of young children identified as HIV positive, residing in Agincourt, rural South Africa were advised of their child’s status. How was this knowledge received, and how did it influence care‐giving and support? Interviews were conducted in May to June 2008 with caregivers of HIV positive children aged 1–5 years, 1 year following the child’s HIV test and disclosure of status. Drawing on data from 31 semi‐structured questionnaires and 21 in‐depth interviews, we describe caregivers’ attitudes, reactions, fears and aspirations after learning a child’s HIV status, the perceived usefulness of the knowledge, barriers to care‐giving and support received. Sociodemographic data collected through the questionnaire were analysed using Stata. Qualitative data were coded in NVIVO 8 and analysed inductively to identify themes and their repetitions and variations. Although almost half of the caregivers responded negatively initially, 1 year later, almost all had accepted and valued knowing their child’s HIV status as this had enhanced their competency in care‐giving. Counselling from health providers and personal spirituality helped caregivers to accept the child’s status and cope with its implications. Most caregivers had high aspirations for the child’s future, despite some expressed difficulties associated with care‐giving, including financial constraints, information gaps and barriers to healthcare. The results indicate an opportunity for paediatric HIV screening in communities with high HIV prevalence. This would facilitate early uptake of available interventions, so enhancing the survival of HIV positive children.     

‘You say treatment,I say hard work’: treatment burden among people with chronic illness and their carers in Australia

The aim of this study was to explore treatment burden among people with a variety of chronic conditions and comorbidities and their unpaid carers. The burden of living with ongoing chronic illness has been well established. However, the burden associated with proactively treating and managing chronic illness, commonly referred to as ‘treatment burden’, is less understood. This study helps to bridge this gap in our understanding by providing an in‐depth analysis of qualitative data collected from a large sample of adults from diverse backgrounds and with various chronic conditions. Using semi‐structured in‐depth interviews, data were collected with a large sample of 97 participants that included a high representation of people from culturally and linguistically diverse backgrounds and indigenous populations across four regions of Australia. Interviews were conducted during May–October 2012, either face to face (n = 49) or over the telephone (n = 48) depending on the participant's preference and location. Data were analysed using an iterative thematic approach and the constant comparison method. The findings revealed four interrelated components of treatment burden: financial burden, time and travel burden, medication burden and healthcare access burden. However, financial burden was the most problematic component with the cost of treatment being significant for most people. Financial burden had a detrimental impact on a person's use of medication and also exacerbated other types of burden such as access to healthcare services and the time and travel associated with treatment. The four components of treatment burden operated in a cyclical manner and although treatment burden was objective in some ways (number of medications, and time to access treatment), it was also a subjective experience. Overall, this study underscores the urgent need for healthcare professionals to identify patients overwhelmed by their treatment and develop ‘individualised’ treatment options to alleviate treatment burden.     

A tale of two epidemics: gay men's mental health and the biomedicalisation of HIV prevention and care in Toronto

There is mounting urgency regarding the mental health of gay, bisexual and other men who have sex with men (GBM). We examined how GBM are understanding the relationship between HIV and their mental health given the increasing biomedicalisation of HIV prevention and care. Our Grounded Theory analysis derived from qualitative interviews with 24 GBM living in Toronto, Canada, including both HIV‐negative and HIV‐positive men. Participants understood biomedical advances, such as undetectable viral load and pre‐exposure prophylaxis (PrEP), as providing some relief from HIV‐related distress. However, they offered ambivalent perspectives on the biomedicalisation of HIV. Some considered non‐HIV‐specific stressors (e.g. unemployment, racial discrimination) more significant than HIV‐related concerns. These men expressed HIV‐related distress as being under control due to biomedical advances or as always negligible when compared to non‐HIV‐specific stressors. Others emphasised the ongoing mental health implications of HIV (e.g. enduring risk and stigma). We describe a tension between optimistic responses to biomedicine's ability to ease the psychosocial burdens associated with HIV and the inability for biomedicine to address the social and economic determinants driving the dual epidemics of HIV and mental distress amongst GBM. We argue for more socio‐material analysis over further sexual behavioural analysis of GBM mental health disparities.     

‘You don't get told anything,they don't do anything and nothing changes’. Medicine as a resource and constraint in progressive ataxia

Background

Progressive ataxias are neurological disorders affecting balance, co‐ordination of movement and speech.

Objective

A qualitative study was undertaken to discover patients'' experiences of ataxia and its symptoms.

Participants

Thirty‐eight people with ataxia recruited from patient support groups and two hospital outpatients departments.

Design

Cross‐sectional qualitative study with thematic analysis.

Results

These accounts highlight the limits of medicine in the context of a rare, incurable and disabling disorder, and the embodied uncertainties brought by slowly progressive diseases that lie at the boundaries of mainstream medical knowledge. The existential crises faced by people with ataxia are seemingly magnified by sometimes idiopathic aetiologies and the limited number of inherited conditions identifiable by the available genetic tests. Interviewees were drawn into a medical system that was focused mainly on the diagnosis process, with widely varying results. However, when asked, most had rather valued the provision of disability aids and physical therapies. Only one informant reported overcoming the myriad uncertainties of progressive ataxia, and their account supported the notion of ‘biographical repair’ in chronic illness.

Conclusions

Clinical uncertainties in ataxia constrained people''s attempts to deal with their condition. The construction of the proactive, informed, medical consumer who is assumed to be a partner in care is problematic in the context of a rare and difficult‐to‐diagnose disease for which there is usually no cure. Service providers should be mindful of the need to manage patient expectations in relation to diagnosis and cure. More focus might usefully be placed on the provision of physical therapies and disability aids.