Sarah Bernays

Hope : a new way to look at the HIV epidemic

There is currently a shift towards embracing ‘structural intervention’ approaches in HIV prevention and HIV treatment. We offer the concept of hope as an important new framework for researching HIV prevention and HIV treatment. We argue first, that hope is linked to capacity for behaviour change and helps us understand how social environments enable as well as constrain risk reduction. Second, we argue that hope helps us understand HIV treatment engagement and impact, especially uneasy relations between treatment access expectation and the lived experience of treatment delivery in environments characterized by fragile treatment systems. We conclude that HIV prevention should seek to create the structural conditions conducive to sustaining hope in the future, while drawing attention to the often unforeseen local effects of global discourses of HIV treatment promise which may offer an illusion of hope in certain contexts. We draw specific attention to the urgent need for interventions to tackle the adverse psychological and social consequences of fragile treatment delivery. Hope is an under researched concept in the social science of HIV prevention and HIV treatment. It offers unrealized potential, particularly for thinking about structural interventions in relation to managing HIV as a chronic illness and for maximizing HIV risk reduction in resource-poor settings.

Children growing up with HIV infection: the responsibility of success.

1Those working in paediatric HIV care are now cautiously optimistic. Comparing the landscape with 10 years ago when HIVinfected infants faced inevitable death, those born with HIV now have access to antiretroviral therapy (ART) so that increasing numbers of children are surviving to adolescence and beyond. 2 Coupled with this progress, the number of new infections has substantially decreased (from 450 000 in 2005, to 260 000 in 2012) because of scale-up of interventions to prevent mother-to-child HIV transmission (PMTCT), resulting in a shift of burden of HIV towards older children. 3 Additionally, large numbers of children with slowly progressing disease, infected before PMTCT interventions became widely available, are presenting for the fi rst time in adolescence, having lived with untreated HIV for a decade or more. 4

You should be grateful to have medicines: continued dependence, altering stigma and the HIV treatment experience in Serbia.

Abstract The expectation that universal HIV treatment access in resource-stretched settings will reduce stigma is a powerful aspiration that has been incorporated into a global rhetoric of hope around the HIV pandemic. Between 2005 and 2007, we undertook qualitative longitudinal research with people living with HIV/AIDS (PLHIV) in Serbia. We draw here upon the thematic analysis of prospective interview accounts of 20 individuals to analyse PLHIVs perceptions of the influence of HIV treatment upon their quality of life. HIV is one of few conditions in Serbia where its treatment is fully funded by the state. Inconsistent treatment delivery means HIV treatment is experienced as insecure. Competitive claims for stretched national resources interplay with a moral economy which sees PLHIV as “undeserving” citizens. The guilt and anxiety felt by PLHIV intersect with severely curtailed employment opportunities, which weaken the anticipated restorative and empowering properties embedded within the promise of universal HIV treatment access. Rationed expectations of patient or system instigated change mean PLHIVs efforts are orientated towards short-term individualised self-care, drawing on bureaucratic technologies to mediate their uncertainty. These factors integrate to create a specific cultural and historical context for an altered but continuing stigma towards PLHIV in this era of treatment. This case study cautions against neglecting the underlying structural process of stigmatisation that constrains the capacity of PLHIV to participate in anti-stigma and community organising activities, indicating that in this setting HIV treatment is insufficient alone to reduce stigma or enable major social and economic change in the everyday lives of PLHIV.

‘Children will always be children’: Exploring perceptions and experiences of HIV-positive children who may not take their treatment and why they may not tell

HIV-positive children and young people may face substantial social barriers to maintaining appropriate levels of adherence to antiretroviral therapy (ART) during childhood and adolescence. In this paper, we focus on these childrens voices and the challenges they face growing up living with HIV in Uganda. Drawing on retrospective self-reports of 26 children living with HIV, taking ART and attending a clinic in central Uganda, we examine the reasons for non-adherence to ART among children and why they may not report when they miss their treatment. The reasons why children may not take their treatment are socially complex and similar to adult experiences and the struggles people face in adhering to life-long treatment of a condition that is stigmatised. Children are aware of the stigma that surrounds their condition and respond to adults who stress the importance of keeping their condition secret. The causes of non-adherence are not necessarily due to forgetting, but because of concerns about secrecy and children deliberately avoiding being seen taking their treatment, for example, to avoid identification. Childrens desire to maintain and protect relationships explains non-adherence as well as their failure to report it to adults. The clinical focus on exemplary adherence makes it more difficult for healthcare workers to discuss with children the social challenges that they may experience in taking treatment every day. If adults could approach non-adherence with greater empathy, recognising that children too are juggling treatment taking and social concerns then children may feel more willing to tell them about missed doses. Their poor adherence is not an inevitable element of the experience of being a child, but rather, like many adults, a substantial challenge if they are to manage their life-long treatment.

‘Home, and not some house’: young people's sensory construction of family relationships in domestic spaces

Drawing on recent work highlighting sensory experience of space, this paper argues that understandings of childrens and young peoples relationships, including difficult family circumstances, may be enriched by taking greater account of their embodied, sensory experience of the domestic spaces in which these relationships are lived. In a study of young peoples family life in the context of parental substance misuse, we found that respondents often made sense of difficult family relationships, at different times and in particular spaces, through sensory experience. They also employed sensory and spatial strategies to construct safe and secure domestic places for themselves.

Experiencing uncertain HIV treatment delivery in a transitional setting: qualitative study.

Abstract Background. Advances in HIV treatment availability mean that the promise of highly active anti-retroviral treatment to turn HIV into a manageable chronic illness is becoming a reality for millions. However the mutability of the virus means that treatment adherence demands are high, and the supply of these life-saving treatments needs to be constant. The onus is generally placed on the individual to adhere, and there is little focus in research or policy on the states adherence to delivering treatment consistently. Methods.We undertook in-depth qualitative interviews to explore the narratives of HIV treatment experience among 41 people living with HIV (PLHIV) infection and 18 HIV treatment service providers in Serbia and Montenegro, a transitional setting in which state delivered and funded HIV treatment is inconsistently available. Data were analysed inductively and thematically. Findings. Treatment shortages were common so the delivery of appropriate HIV treatment was not continuous. Access to reliable treatment and supply forecast information was weak and uneven. The insecure treatment situation fostered significant anxiety amongst PLHIV. Interpretation. In the absence of reliable and sustained treatment access, information and support, PLHIV absorb the anxieties of system failures. This uncertainty led to an individuation of “treatment”. PLHIV adopted rationing strategies to mediate their anxiety, energy and hope. This predominately resulted in varying forms of disengagement and neglect for social change. It is likely that this has significant negative implications for the promotion of HIV treatment advocacy and anti-stigma efforts.

When information does not suffice: young people living with HIV and communication about ART adherence in the clinic.

ABSTRACT Despite mounting evidence recommending disclosure of human immunodeficiency virus (HIV) status to young people with perinatally acquired HIV as a central motivating factor for adherence to antiretroviral therapy, many young people continue to experience disclosure as a partial event, rather than a process. Drawing from two longitudinal, interview-based qualitative studies with young people living with HIV (aged 10–24) in five different countries in low and high income settings, we present data regarding disclosure and information about HIV in the clinic. The article highlights the limits of discussions framing disclosure and patient literacy, and young people’s reluctance to voice their adherence difficulties in the context of their relationships with clinical care teams. We suggest that a clinician-initiated, explicit acknowledgment of the social and practical hurdles of daily adherence for young people would aid a more transparent conversation and encourage young people to disclose missed doses and other problems they may be facing with their treatment. This may help to reduce health harms and poor adherence in the longer-term.

“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

ABSTRACT 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.

BREATHER (PENTA 16) short-cycle therapy (SCT) (5 days on/2 days off) in young people with chronic human immunodeficiency virus infection: an open, randomised, parallel-group Phase II/III trial

BACKGROUND For human immunodeficiency virus (HIV)-infected adolescents facing lifelong antiretroviral therapy (ART), short-cycle therapy (SCT) with long-acting agents offers the potential for drug-free weekends, less toxicity, better adherence and cost savings. OBJECTIVES To determine whether or not efavirenz (EFV)-based ART in short cycles of 5 days on and 2 days off is as efficacious (in maintaining virological suppression) as continuous EFV-based ART (continuous therapy; CT). Secondary objectives included the occurrence of new clinical HIV events or death, changes in immunological status, emergence of HIV drug resistance, drug toxicity and changes in therapy. DESIGN Open, randomised, non-inferiority trial. SETTING Europe, Thailand, Uganda, Argentina and the USA. PARTICIPANTS Young people (aged 8-24 years) on EFV plus two nucleoside reverse transcriptase inhibitors and with a HIV-1 ribonucleic acid level [viral load (VL)] of < 50 copies/ml for > 12 months. INTERVENTIONS Young people were randomised to continue daily ART (CT) or change to SCT (5 days on, 2 days off ART). MAIN OUTCOME MEASURES Follow-up was for a minimum of 48 weeks (0, 4 and 12 weeks and then 12-weekly visits). The primary outcome was the difference between arms in the proportion with VL > 50 copies/ml (confirmed) by 48 weeks, estimated using the Kaplan-Meier method (12% non-inferiority margin) adjusted for region and age. RESULTS In total, 199 young people (11 countries) were randomised (n = 99 SCT group, n = 100 CT group) and followed for a median of 86 weeks. Overall, 53% were male; the median age was 14 years (21% ≥ 18 years); 13% were from the UK, 56% were black, 19% were Asian and 21% were Caucasian; and the median CD4% and CD4 count were 34% and 735 cells/mm(3), respectively. By week 48, only one participant (CT) was lost to follow-up. The SCT arm had a 27% decreased drug exposure as measured by the adherence questionnaire and a MEMSCap(™) Medication Event Monitoring System (MEMSCap Inc., Durham, NC, USA) substudy (median cap openings per week: SCT group, n = 5; CT group, n = 7). By 48 weeks, six participants in the SCT group and seven in the CT group had a confirmed VL > 50 copies/ml [difference -1.2%, 90% confidence interval (CI) -7.3% to 4.9%] and two in the SCT group and four in the CT group had a confirmed VL > 400 copies/ml (difference -2.1%, 90% CI -6.2% to 1.9%). All six participants in the SCT group with a VL > 50 copies/ml resumed daily ART, of whom five were resuppressed, three were on the same regimen and two with a switch; two others on SCT resumed daily ART for other reasons. Overall, three participants in the SCT group and nine in the CT group (p = 0.1) changed ART regimen, five because of toxicity, four for simplification reasons, two because of compliance issues and one because of VL failure. Seven young people (SCT group, n = 2; CT group, n = 5) had major non-nucleoside reverse transcriptase inhibitor mutations at VL failure, of whom two (n = 1 SCT group, n = 1 CT group) had the M184V mutation. Two young people had new Centers for Disease Control B events (SCT group, n = 1; CT group, n = 1). There were no significant differences between SCT and CT in grade 3/4 adverse events (13 vs. 14) or in serious adverse events (7 vs. 6); there were fewer ART-related adverse events in the SCT arm (2 vs. 14; p = 0.02). At week 48 there was no evidence that SCT led to increased inflammation using an extensive panel of markers. Young people expressed a strong preference for SCT in a qualitative substudy and in pre- and post-trial questionnaires. In total, 98% of the young people are taking part in a 2-year follow-up extension of the trial. CONCLUSIONS Non-inferiority of VL suppression in young people on EFV-based first-line ART with a VL of < 50 copies/ml was demonstrated for SCT compared with CT, with similar resistance, safety and inflammatory marker profiles. The SCT group had fewer ART-related adverse events. Further evaluation of the immunological and virological impact of SCT is ongoing. A limitation of the trial is that the results cannot be generalised to settings where VL monitoring is either not available or infrequent, nor to use of low-dose EFV. Two-year extended follow-up of the trial is ongoing to confirm the durability of the SCT strategy. Further trials of SCT in settings with infrequent VL monitoring and with other antiretroviral drugs such as tenofovir alafenamide, which has a long intracellular half-life, and/or dolutegravir, which has a higher barrier to resistance, are planned. TRIAL REGISTRATION Current Controlled Trials ISRCTN97755073; EUDRACT 2009-012947-40; and CTA 27505/0005/001-0001. FUNDING This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme (projects 08/53/25 and 11/136/108), the European Commission through EuroCoord (FP7/2007/2015), the Economic and Social Research Council, the PENTA Foundation, the Medical Research Council and INSERM SC10-US19, France, and will be published in full in Health Technology Assessment; Vol. 20, No. 49. See the NIHR Journals Library website for further project information.

Embodied Accounts of HIV and Hope: Using Audio Diaries With Interviews

Capturing the complexity of the experience of chronic illness over time presents significant methodological and ethical challenges. In this article, we present methodological and substantive insights from a longitudinal qualitative study with 20 people living with HIV in Serbia. We used both repeated in-depth interviews and audio diaries to explore the role of hope in coping with and managing HIV. Using thematic longitudinal analysis, we found that the audio diaries produced distinctive, embodied accounts that straddled the public/private divide and engaged with alternative social scripts of illness experience. We suggest that this enabled less socially anticipated accounts of coping, hoping, and distress to be spoken and shared. We argue that examining the influence of different methods on accounting not only illustrates the value of qualitative mixed-method study designs but also provides crucial insights to better understand the lived experience of chronic illness.