Amsterdam 2015
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| Abstract #3435 - Treatment adherence | ||||
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Session: 48.5: Treatment adherence (Parallel) on Friday @ 09.00-10.30 in C002 Chaired by Kendra Blackett Dabinga, Aoife Molloy Authors: Presenting Author: Dr Sarah Bernays - London School of Hygiene and Tropical Medicine, United Kingdom |
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| Additional Authors: | ||||
| Aim: As access to ART for the HIV paediatric cohort is expanded, research consistently shows lower rates of adherence and problems with care engagement for young people across all income settings. There is an urgent need to understand young people’s treatment experiences through research that focuses on their perspectives and needs, rather than only on those of their carers. | ||||
| Method / Issue: We report from a programme of longitudinal, interview-based, qualitative studies with (147) HIV+ young people (aged 10-24) in Uganda, Zimbabwe, USA, UK and Ireland. The presentation focuses on reputation management and the relational dynamics involved in how young people communicate about their adherence challenges. | ||||
| Results / Comments: Against the background of the silence that characterises growing up with HIV in most settings, clinics are central to young people’s HIV experience as rare places where their status is known, they receive care and can access information about their condition. However, HIV-related discussions in the clinic can at times be limited to discussions about ART, and clinics are also places where young people have to navigate their reputation as ‘good’ or ‘bad’ patients. In settings where treatment access and options are restricted by limited resources, additional pressure is exerted on young people, and their clinical care teams, to maximise the benefits of available ART, especially whilst many of their peers lack the same access. Sometimes, reference to the ways in which their biological parents might have died is also used to explain to young people the risks they face if they fail to take their treatment. Some of these harsher measures however can be counterproductive, inhibiting young people’s willingness to disclose adherence-related issues and limiting their care engagement. Yet even where more supportive environments are created, a spectrum of relational dynamics still impact on young people’s capacity to talk about their difficulties with ART. The desire to maintain good relationships with clinicians can affect young people’s help-seeking, as they worry about what might happen if and when they talk about struggling with HIV or ART. Some young people cope by controlling what they will and will not disclose, including missed doses, side-effects, or changes they make to the way they take their treatment without seeking clinicians’ advice. Clearly this represents a threat to their health and constrains the quality of the care that can be provided to them. | ||||
| Discussion: Through the trust built over repeated interviews with longitudinal designs, and through the use of innovative methods, our qualitative studies have been able to explore the extent of young people’s acquiescence to what they perceive is demanded of them. Despite the many challenges they face, young people in our study show an acute awareness of the dangers of non-adherence. Thus, they can be caught between competing anxieties about their health and the fear of admitting to ‘failure’ when they cannot achieve ideal levels of adherence. The presentation will end with a discussion of some of the ways in which young people’s treatment and care experience can be improved in HIV care, based on the combined findings from our qualitative studies. | ||||
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