"Not Taking it Will Just be Like a Sin": Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy.

Global health priorities are being set to address questions on adherence to HIV antiretroviral therapy in adolescence. Few studies have explored young people's perspectives on the complex host of social and relational challenges they face in dealing with their treatment in secret and their condition in silence. In redressing this, we present findings from a longitudinal qualitative study with young people living with HIV in the UK, Ireland, US, and Uganda, embedded within the BREATHER international clinical trial. Drawing from Goffman's notion of stigma, we analyze relational dynamics in HIV clinics, as rare spaces where HIV is "known," and how young people's relationships may be threatened by non-adherence to treatment. Young people's reflections on and strategies for maintaining their reputation as patients raise questions about particular forms of medicalization of HIV and the moralization of treatment adherence that affect them, and how these may restrict opportunities for care across the epidemic

Supporting your support staff during crises: recommendations for practice leaders to develop a relational workplace

Background: The workload and wellbeing of support staff in general practice has been critically understudied. This includes reception, secretarial and administrative workers who are critical in the daily practice function. Currently, only reception staff are mentioned in the evidence base on general practice working conditions, and all support staff are excluded from studies about the impact of the pandemic on healthcare workers’ work and wellbeing. Aim: To outline the unique work support staff do, the additional burden it places on them, and how the symphony of crises in 2020–2023 compounded those burdens. Additionally, to provide practical advice for practice leaders on how to support staff wellbeing through developing a relational and psychologically safe working environment. Methods: These findings are drawn from qualitative research (case studies built through observations, interviews and focus groups) conducted in 2022–2023. Results: Through theoretically informed analysis, we found that support staff do specialist intersectional guiding work to support patients, other staff, and the practice as a whole. We define this as lay translation, specialist-lay translation, and occupational translation. Under crises, the volume of this work grows, complexifies, and becomes more fragmented. Relational and supportive teams were more able to adapt to these challenges. Discussion: Support staff should be recognised and enabled to perform these specialised roles. Therefore, we provide a set of recommendations for practice leaders to consider integrating into their own workplaces

The stories we tell:Qualitative research interviews, talking technologies and the 'normalisation' of life with HIV

Since the earliest days of the HIV/AIDS epidemic, talking about the virus has been a key way affected communities have challenged the fear and discrimination directed against them and pressed for urgent medical and political attention. Today, HIV/AIDS is one of the most prolifically and intimately documented of all health conditions, with entrenched infrastructures, practices and technologies--what Vinh-Kim Nguyen has dubbed 'confessional technologies'--aimed at encouraging those affected to share their experiences. Among these technologies, we argue, is the semi-structured interview: the principal methodology used in qualitative social science research focused on patient experiences. Taking the performative nature of the research interview as a talking technology seriously has epistemological implications not merely for how we interpret interview data, but also for how we understand the role of research interviews in the enactment of 'life with HIV'. This paper focuses on one crucial aspect of this enactment: the contemporary 'normalisation' of HIV as 'just another' chronic condition--a process taking place at the level of individual subjectivities, social identities, clinical practices and global health policy, and of which social science research is a vital part. Through an analysis of 76 interviews conducted in London (2009-10), we examine tensions in the experiential narratives of individuals living with HIV in which life with the virus is framed as 'normal', yet where this 'normality' is beset with contradictions and ambiguities. Rather than viewing these as a reflection of resistances to or failures of the enactment of HIV as 'normal', we argue that, insofar as these contradictions are generated by the research interview as a distinct 'talking technology', they emerge as crucial to the normative (re)production of what counts as 'living with HIV' (in the UK) and are an inherent part of the broader performative 'normalisation' of the virus

Adolescents Living With HIV: Checking Unhelpful Terminology.

Global efforts and challenges in addressing the burden of adolescent HIV have demonstrated language matters. Presently, progress is hindered by the unhelpful and influential use of outdated, inadvertently stigmatising terminology. We propose universal adoption of the terms ‘recently acquired HIV’ rather than ‘behaviourally-acquired,’ and ‘treatment switch’ rather than ‘treatment failure.

DIY HIV prevention: Formative qualitative research with men who have sex with men who source PrEP outside of clinical trials.

Pre-exposure prophylaxis (PrEP) with antiretroviral medication is an effective, evidence-based option for HIV prevention. In England, issues of cost-effectiveness and of responsibility for commissioning prevention services have so far led National Health Service (NHS) England to decide not to commission PrEP. Given the significant lag between the awareness of PrEP efficacy and the opportunity to obtain PrEP through traditional health care routes, many gay and other men who have sex with men (MSM) have turned to 'DIY PrEP', purchasing generic formulations of PrEP for themselves on the internet or via other alternative routes. However, there is very little research on DIY PrEP practices and no qualitative study with DIY PrEP users in the UK. A formative qualitative study was conducted in 2017 to inform the development of an intervention (PrEP Club) to support DIY PrEP users and improve the safety and experience of this prevention strategy. Focus groups were held with 20 MSM who are based in London and are obtaining PrEP through means other than clinical trials, to explore their accounts of sourcing and using PrEP and the experiential meanings of these. In this article, we report findings from this first, formative study and present the different practices involved in finding out about PrEP, buying it and ascertaining legitimacy of sellers and products. We reflect on the uncertainties participants described related to actually using PrEP, including deciding on drug dosing and monitoring their health. Finally, we present the results of the discussions participants had about the kind of support they had received, the help they would have liked, and their views on proposed interventions to support DIY PrEP users, such as PrEP Club

Case study research for better evaluations of complex interventions: rationale and challenges.

Background: The need for better methods for evaluation in health research has been widely recognised. The ‘complexity turn’ has drawn attention to the limitations of relying on causal inference from randomised controlled trials alone for understanding whether, and under which conditions, interventions in complex systems improve health services or the public health, and what mechanisms might link interventions and outcomes. We argue that case study research—currently denigrated as poor evidence—is an under-utilised resource for not only providing evidence about context and transferability, but also for helping strengthen causal inferences when pathways between intervention and effects are likely to be non-linear. Main body: Case study research, as an overall approach, is based on in-depth explorations of complex phenomena in their natural, or real-life, settings. Empirical case studies typically enable dynamic understanding of complex challenges and provide evidence about causal mechanisms and the necessary and sufficient conditions (contexts) for intervention implementation and effects. This is essential evidence not just for researchers concerned about internal and external validity, but also research users in policy and practice who need to know what the likely effects of complex programmes or interventions will be in their settings. The health sciences have much to learn from scholarship on case study methodology in the social sciences. However, there are multiple challenges in fully exploiting the potential learning from case study research. First are misconceptions that case study research can only provide exploratory or descriptive evidence. Second, there is little consensus about what a case study is, and considerable diversity in how empirical case studies are conducted and reported. Finally, as case study researchers typically (and appropriately) focus on thick description (that captures contextual detail), it can be challenging to identify the key messages related to intervention evaluation from case study reports. Conclusion: Whilst the diversity of published case studies in health services and public health research is rich and productive, we recommend further clarity and specific methodological guidance for those reporting case study research for evaluation audiences

Qualitative study of the BREATHER trial (Short Cycle antiretroviral therapy): is it acceptable to young people living with HIV?

OBJECTIVES: A qualitative study of the BREATHER (PENTA 16) randomised clinical trial, which compared virological control of Short Cycle Therapy (SCT) (5 days on: 2 days off) with continuous efavirenz (EFV)-based antiretroviral therapy (CT) in children and young people (aged 8-24) living with HIV with viral load <50 c/mL to examine adaptation, acceptability and experience of SCT to inform intervention development. SETTING: Paediatric HIV clinics in the UK (2), Ireland (1), the USA (1) and Uganda (1). PARTICIPANTS: All BREATHER trial participants who were over the age of 10 and aware of their HIV diagnosis were invited to participate. 49 young people from both arms of the BREATHER trial (31 females and 18 males; 40% of the total trial population in the respective sites; age range 11-24) gave additional consent to participate in the qualitative study. RESULTS: Young people from both trial arms had initial concerns about the impact of SCT on their health and adherence, but these decreased over the early months in the trial. Young people randomised to SCT reported preference for SCT compared with CT pre-trial. Attitudes to SCT did not vary greatly by gender or country. Once short-term adaptation challenges were overcome, SCT was positively described as reducing impact of side effects, easing the pressure to carry and remember medication and enabling more weekend social activities. Young people on both arms reported frequent medication side effects and occasional missed doses that they had rarely voiced to clinical staff. Participants liked SCT by trial end but were concerned that peers who had most problems adhering could find SCT disruptive and difficult to manage. CONCLUSIONS: To realise the potential of SCT (and mitigate possible risks of longer interruptions), careful dissemination and communication post-trial is needed. SCT should be provided alongside a package of monitoring, support and education over 3 months to allow adaptation. TRIAL REGISTRATION NUMBER: NCT 01641016

Case study research and causal inference.

Case study methodology is widely used in health research, but has had a marginal role in evaluative studies, given it is often assumed that case studies offer little for making causal inferences. We undertook a narrative review of examples of case study research from public health and health services evaluations, with a focus on interventions addressing health inequalities. We identified five types of contribution these case studies made to evidence for causal relationships. These contributions relate to: (1) evidence about system actors' own theories of causality; (2) demonstrative examples of causal relationships; (3) evidence about causal mechanisms; (4) evidence about the conditions under which causal mechanisms operate; and (5) inference about causality in complex systems. Case studies can and do contribute to understanding causal relationships. More transparency in the reporting of case studies would enhance their discoverability, and aid the development of a robust and pluralistic evidence base for public health and health services interventions. To strengthen the contribution that case studies make to that evidence base, researchers could: draw on wider methods from the political and social sciences, in particular on methods for robust analysis; carefully consider what population their case is a case 'of'; and explicate the rationale used for making causal inferences

"How Do We Start? And How Will They React?" Disclosing to Young People with Perinatally Acquired HIV in Uganda.

Despite great advances in pediatric HIV care, rates and the extent of full disclosure of HIV status to infected children remain low especially in resource-constrained setting. The World Health Organisation recommends that, by the age of 10-12 years old, children should be made fully aware of their HIV-positive status. However, this awareness is often delayed until much later in their adolescence. Few studies have been conducted to investigate what influences caregivers' decision-making process in this regard in low-income settings. In this article, we present an analysis of care dyads of caregivers and HIV-positive young people in Kampala, Uganda, as part of the findings of a longitudinal qualitative study about young people's adherence to antiretroviral therapy embedded in an international clinical trial (BREATHER). Repeat in-depth interviews were conducted with 26 young people living with HIV throughout the course of the trial, and once-off interviews with 16 of their caregivers were also carried out toward the end of the trial. In this article, we examine why and how caregivers decide to disclose a young person's HIV status to them and explore their feelings and dilemmas toward disclosure, as well as how young people reacted and the influence it had on their relationships with and attitudes toward their caregivers. Caregivers feared the consequences of disclosing the young person's positive status to them and disclosure commonly occurred hurriedly in response to a crisis, rather than as part of an anticipated and planned process. A key impediment to disclosure was that caregivers feared that disclosing would damage their relationships with the young people and commonly used this as a reason to continue to postpone disclosure. However, young people did not report prolonged feelings of blame or anger toward their caregivers about their own infection, but they did express frustration at the delay and obfuscation surrounding the disclosure process. Our findings can inform the ways in which mainstream HIV services support caregivers through the disclosure process. This includes providing positive encouragement to disclose fully and to be more confident in initiating and sustaining the timely process of disclosure

The social life of HIV care: On the making of ‘care beyond the virus’

Treating care as an effect of material implementations, we use qualitative interviews with people living with HIV in London, most of whom are migrants, to explore care practices linked to clinical treatment delivered as part of the ‘cascade of HIV care’. We consider how HIV care is done, and what HIV care does, drawing on assemblage theory. We ask how is care affected by the situations in which it is enacted? and what contingent forms of care does the HIV care cascade potentiate? A prime actor in the care assemblages revealed in our study is immigration, from which multiple uncertainties flow, including access to vital resources such as housing and income. Yet we also found that clinical HIV care is worked-with in practice to afford multiple forms of care. Here, viral care is translated into matters of vital concern to produce care which extends ‘beyond the virus’. Practices of care beyond the virus afford social protection, including through making-up social relations and networks, and novel modes of sociality. Friendship connections, community organisations and HIV clinics are among the key actors involved. Being attuned to how HIV care is made to matter helps generate new ways of knowing and doing care