"Because we all have to grow up": supporting adolescents in Uganda to develop core competencies to transition towards managing their HIV more independently.

Chloe Lanyon,Janet Seeley,Anna Turkova,Sarah Bernays,Helen Nakyambadde,Victor Musiime,Sara Paparini,Christine Matama,Stella Namukwaya

doi:10.1002/jia2.25552

Abstract

IntroductionSustaining optimal adherence is the major challenge facing adolescents living with HIV (ALHIV), particularly in low‐resource settings, where “second‐line” is often the last accessible treatment option. We explored the knowledge and skills adolescents need in order to maintain improved adherence behaviours, and the specific ways clinicians and caregivers may support young people to do so more independently.MethodsWe conducted individual, in‐depth interviews with 20 ALHIV aged 10 to 18 years in Uganda in 2017 to 2018. All participants had recently commenced second‐line treatment as part of a clinical trial. We used thematic qualitative analysis to examine adherence experiences and challenges while on first‐line therapy, as well as specific supports necessary to optimise treatment‐taking longer‐term.ResultsAdherence difficulties are exacerbated by relatively rapid shifts from caregiver‐led approaches during childhood, to an expectation of autonomous treatment‐taking with onset of adolescence. For many participants this shift compounded their ongoing struggles managing physical side effects and poor treatment literacy. Switching to second‐line typically prompted reversion back to supervised adherence, with positive impacts on self‐reported adherence in the immediate term. However, this measure is unlikely to be sustainable for caregivers due to significant caregiver burden (as on first line), and provided little opportunity for clinicians to guide and develop young people’s capacity to successfully adopt responsibility for their own treatment‐taking.ConclusionsAs ALHIV in sub‐Saharan Africa are attributed increasing responsibility for treatment adherence and HIV management, they must be equipped with the core knowledge and skills required for successful, self‐directed care. Young people need to be relationally supported to develop necessary “adherence competencies” within the supportive framework of a gradual “transition” period. Clinic conversations during this period should be adolescent‐focussed and collaborative, and treatment‐taking strategies situated within the context of their lived environments and support networks, to facilitate sustained adherence. The disclosure of adherence difficulties must be encouraged so that issues can be identified and addressed prior to treatment failure.

Highlights

Sustaining optimal adherence is the major challenge facing adolescents living with HIV (ALHIV), in low-resource settings, where “second-line” is often the last accessible treatment option
With vast improvements in survival resulting from effective prevention of mother-to-child transmission (PMTCT) and antiretroviral treatment (ART) for HIV in high-burden, resource-stretched countries, adolescence has emerged as a critical priority area for HIV care [1,2,3]
Limited improvements in survival have been observed among this age-group relative to their paediatric and adult counterparts [3,4], and morbidity rates among adolescents in sub-Saharan Africa are not declining at the same pace as other age groups [3]

Summary

Introduction

Sustaining optimal adherence is the major challenge facing adolescents living with HIV (ALHIV), in low-resource settings, where “second-line” is often the last accessible treatment option. Switching to second-line typically prompted reversion back to supervised adherence, with positive impacts on self-reported adherence in the immediate term This measure is unlikely to be sustainable for caregivers due to significant caregiver burden (as on first line), and provided little opportunity for clinicians to guide and develop young people’s capacity to successfully adopt responsibility for their own treatment-taking. As for other chronic conditions, provision of HIV care during adolescence is characterised by unique management challenges as major cognitive, psychosocial, physical and sexual developmental changes take place [5,6,7,8] This is illustrated by relatively poorer HIV-care outcomes with high rates of attrition from clinical care services [9,10,11] and compromised ART adherence [10,12,13]. Contextually appropriate approaches to formalising this process are needed to facilitate intentional adolescent capacity-development and treatment continuity [9,24]

Methods

Results

Discussion

Conclusion