What am I 'living' with? Growing up with HIV in Uganda and Zimbabwe.

As paediatric HIV treatment has become increasingly available across the world, the global perinatally infected cohort is ageing. However, we know surprisingly little about what it is like to grow up with HIV in resource-stretched settings. We draw on findings from a prospective, qualitative study with HIV-positive children, their carers and healthcare workers from four clinics in Uganda and Zimbabwe to examine children's experiences of living with HIV on treatment. We consider how the HIV experience is made in a symbiotic relationship between children, carers and healthcare workers and shaped by broader discourses. Despite the radical development in prognosis for children, their experience of HIV is largely constructed in relation to a language of 'sickness' through the promotion of medicalised talk and the recounting of past illness stories. This narrow narrative framework both reflects and reproduces core dimensions of the lived experience of growing up with HIV, which emphasises an absence of resilient healthiness in the face of ongoing vulnerability and risk. The challenges that children encounter in articulating alternative narratives that prioritise the relative buoyancy of their health is indicative of the broader uncertainty that exists around the future for these children at this point in the epidemic

"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

Being an 'adolescent': The consequences of gendered risks for young people in rural Uganda.

The behaviour of adolescents is recognised increasingly as having substantial and long-term consequences for their health. We examined the meaning of 'adolescence' in southern Uganda with HIV-positive young people aged 11-24 years. Adolescent girls and boys are described differently in the local language (Luganda). Adolescence is described as a behavioural rather than a life course category and an inherently dangerous one. The practices, risks and consequences of 'adolescent' behaviour are highly gendered. Local understandings of adolescence are likely to have a significant impact on the efficacy of interventions designed to minimise their 'risky behaviour'

Being young and on the move in South Africa: how ‘waithood’ exacerbates HIV risks and disrupts the success of current HIV prevention interventions

The period between childhood and adulthood has been characterised as a period of ‘waithood’ in which structural conditions may disable young people’s access to basic resources to become independent adults. We consider the specific implications of this experience for newly migrant young people in KwaZulu-Natal, South Africa. We conducted repeat in-depth interviews and participatory workshops over a 12-month period with 38 young people on their experiences of migration, employment, sexual relationships and approaches taken to mitigate HIV-risk, in a high HIV-risk peri-urban setting. The lives of participants within the first year of arriving in a new place were characterised by fluidity and transience, underpinned by the inherent fragility of options and exacerbated by exploitative employers. Conditions of gendered employment opportunities shaped their capacity to source income, including through sexual relationships. Although risks were evident and ongoing, their significance were under-played with exposure conceived as unavoidable and temporary. HIV prevention services were consequently viewed as relevant to ‘other’ young people. Although navigating an ‘adult’ world, these ‘not yet adults’ are exposed to substantial risks. Services should be tailored to address specific and practical support needs of this transient population, alongside provision of harm-reduction and health support

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.

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

Dissonance of Choice: Biomedical and Lived Perspectives on HIV Treatment-Taking.

Treat-all recommends prompt treatment initiation for those diagnosed HIV positive, requiring adaptations to individuals' behavior and practice. Drawing on data from a longitudinal qualitative study in Eswatini, we examine the choice to initiate treatment when asymptomatic, the dissonance between the biomedical logic surrounding Treat-all and individuals' conceptions of treatment necessity, and the navigation over time of ongoing engagement with care. We reflect on the perspectives of healthcare workers, responsible for implementing Treat-all and holding a duty of care for their patients. We explore how the potentially differing needs and priorities of individuals and the public health agenda are navigated and reconciled. Rationalities regarding treatment-taking extend beyond the biomedical realm, requiring adjustments to sense of self and identity, and decision-making that is situated and socially embedded. Sense of choice and ownership for this process is important for individuals' engagement with treatment and care

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

"Well, not me, but other women do not register because..."- Barriers to seeking antenatal care in the context of prevention of mother-to-child transmission of HIV among Zimbabwean women: a mixed-methods study.

BACKGROUND: While barriers to uptake of antenatal care (ANC) among pregnant women have been explored, much less is known about how integrating prevention of mother-to-child transmission (PMTCT) programmes within ANC services affects uptake. We explored barriers to uptake of integrated ANC services in a poor Zimbabwean community. METHODS: A cross-sectional survey was conducted among post-natal women at Mbare Clinic, Harare, between September 2010 and February 2011. Collected data included participant characteristics and ANC uptake. Logistic regression was conducted to determine factors associated with ANC registration. In-depth interviews were held with the first 21 survey participants who either did not register or registered after twenty-four weeks gestation to explore barriers. Interviews were analysed thematically. RESULTS: Two hundred and ninety-nine participants (mean age 26.1 years) were surveyed. They came from ultra-poor households, with mean household income of US$181. Only 229 (76.6$10-increase in household income 1.02 (95% confidence interval, CI, 1.0-1.04), as was education which interacted with having planned the pregnancy (OR for planned pregnancy with completed ordinary level education 3.27 (95%CI 1.55-6.70). Divorced women were less likely to register than married women, OR 0.20 (95%CI 0.07-0.58). In the qualitative study, barriers to either ANC or PMTCT services limited uptake of integrated services. Women understood the importance of integrated services for PMTCT purposes and theirs and the babies' health and appeared unable to admit to barriers which they deemed "stupid/irresponsible", namely fear of HIV testing and disrespectful treatment by nurses. They represented these commonly recurring barriers as challenges that "other women" faced. The major proffered personal barrier was unaffordability of user fees, which was sometimes compounded by unsupportive husbands who were the breadwinners. CONCLUSION: Women who delayed/did not register were aware of the importance of ANC and PMTCT but were either unable to afford or afraid to register. Addressing the identified challenges will not only be important for integrated PMTCT/ANC services but will also provide a model for dealing with challenges as countries scale up 'treat all' approaches

A literature review exploring how health systems respond to acute shocks in fragile and conflict-affected countries

Understanding how health systems respond to shocks has become a pressing need to strengthen response efforts. With already fragmented and disrupted health services, fragile and conflict affected [FCA] countries are more vulnerable to shocks. Previous studies have focused more on conceptualizing health system resilience rather than how health systems [especially in FCA countries] respond to or are resilient to acute shocks. To understand how health systems in FCA countries respond to the shocks and what influence their responses, we conducted a review of the literature published between January 2011 and September 2021 on health system responses to acute shocks in FCA countries. We searched Medline, Embase, Scopus, Jester and Google Scholar – 60 empirical studies in FCA countries on response to sudden, extreme, and unanticipated shocks were included in the review. We found that health systems in FCA countries responded to acute shock using absorptive, adaptive, or transformative capacities. These capacities were mediated by four dimensions of context; knowledge, uncertainties, interdependence, and legitimacy. In addition, we identified the cross-cutting role of community involvement [and its self-evolving nature], frontline workers, and leadership capacity. To our knowledge, this is among the first reviews that focus on FCA country health systems responses to acute shock. By highlighting enabling and constraining factors to each type of capacity, this study provides important lessons and practical strategies from FCA countries on how to absorb, adapt and transform in response to acute shocks – thus promoting health system resilience globally