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

Abstract

Introduction Sustaining 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. Methods We 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. Results Adherence 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. Conclusions As 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.

Risk factors for HIV virological non‐suppression among adolescents with common mental disorder symptoms in Zimbabwe: a cross‐sectional study

“…In this study, participants’ responses to questions about what medication they took and its purpose revealed that at least 51 adolescents knew they were HIV positive even though clinic records and caregivers said that they did not know. Similar results have been found in South Africa [ 52 ] and Uganda [ 53 ]. A qualitative study in Uganda indicated that adolescents found their caregivers’ silence frustrating [ 49 ].…”

“…Viral suppression, achieved through optimal adherence, can support thriving health and can be socially/relationally enabling, by reducing physical signs of HIV and removing fears of onward transmission [ 5 , 54 ]. Open discussion of the implications of an HIV status may help adolescents to “make sense” of their lived reality [ 55 ], enable them to develop a realistic, positive outlook for the future, and thereby have improved mental health and wellbeing [ 53 ]. National guidelines state that caregivers who find it difficult to disclose to the child should be supported by healthcare workers [ 23 ], and this aligns with evidence from systematic reviews [ 56 , 57 ].…”

ODYSSEY clinical trial design: a randomised global study to evaluate the efficacy and safety of dolutegravir-based antiretroviral therapy in HIV-positive children, with nested pharmacokinetic sub-studies to evaluate pragmatic WHO-weight-band based dolutegravir dosing

“…A qualitative sub-study is investigating how best to support young people to maintain optimal adherence to second-line treatment, using interviews and focus groups with a small proportion of participants and carers in ODYS-SEY B [32]. Young people and caregivers' understanding of the DTG pregnancy safety alert have also been explored.…”

Examining healthcare transition experiences among youth living with HIV in Atlanta, Georgia, USA: a longitudinal qualitative study

“…Pre-transition, our results suggest that youth would prefer a more gradual preparatory process including anticipatory guidance about upcoming changes and introductions to new adult clinic providers. Other studies, including those based in the USA and in lower and middle-income countries (LMICs), have similarly emphasized the importance of a gradual, planned transition and preparation for independent disease management prior to transition [20][21][22]. Post-transition, many participants wanted to be gradually eased into their newfound autonomyperhaps retaining some contact with paediatric providers and/or support staff even after the first appointment in the adult clinic has been completed.…”