Scaling a waterfall: a meta‐ethnography of adolescent progression through the stages of HIV care in sub‐Saharan Africa

Abstract

Introduction: Observational studies have shown considerable attrition among adolescents living with HIV across the “cascade” of HIV care in sub-Saharan Africa, leading to higher mortality rates compared to HIV-infected adults or children. We synthesized evidence from qualitative studies on factors that promote or undermine engagement with HIV services among adolescents living with HIV in sub-Saharan Africa. Methods: We systematically searched five databases for studies published between 2005 and 2016 that met pre-defined inclusion criteria. We used a meta-ethnographic approach to identify first, second and third order constructs from eligible studies, and applied a socio-ecological framework to situate our results across different levels of influence, and in relation to each stage of the HIV cascade. Results and discussion: We identified 3089 citations, of which 24 articles were eligible for inclusion. Of these, 17 were from Southern Africa while 11 were from Eastern Africa. 6 explored issues related to HIV testing, 11 explored treatment adherence, and 7 covered multiple stages of the cascade. Twelve third-order constructs emerged to explain adolescents’ engagement in HIV care. Stigma was the most salient factor impeding adolescents’ interactions with HIV care over the past decade. Self-efficacy to adapt to life with HIV and support from family or social networks were critical enablers supporting uptake and retention in HIV care and treatment programmes. Provision of adolescent-friendly services and health systems issues, such as the availability of efficient, confidential and comfortable services, were also reported to drive sustained care engagement. Individual-level factors, including past illness experiences, identifying mechanisms to manage pill-taking in social situations, financial (in)stability and the presence/absence of future aspirations also shaped adolescents HIV care engagement. Conclusions: Adolescents’ initial and ongoing use of HIV care was frequently undermined by individual-level issues; although family, community and health systems factors played important roles. Interventions should prioritise addressing psychosocial issues among adolescents to promote individual-level engagement with HIV care, and ultimately reduce mortality. Further research should explore issues relating to care linkage and ART initiation in different settings, particularly as “test and treat” policies are scaled up.

“How am I going to live?”: exploring barriers to ART adherence among adolescents and young adults living with HIV in Uganda

“…The impact of poverty in SSA, and many of the costs associated with ART adherence, have been increasingly documented in the peer reviewed literature [ 29 – 32 ]. For example, several multi-country studies that included Uganda, documented how, despite free provision of ART, other related costs (e.g., transportation, lost wages due to time spent seeking healthcare) posed a significant barrier to ART adherence [ 30 , 31 ].…”

“…Respondents from all focus groups noted how the influence of family was inconsistent and often further complicated by the frequent change in guardianship resulting from the loss of biological parents to HIV. The role of family and its impact on ART adherence has been documented in both high- [ 41 ] and low-resource settings [ 32 , 39 ]. Several studies note the stress experienced by caregivers, who often feel ill-prepared to provide the support needed by their HIV-positive youth [ 42 ].…”

“…Problems associated with HIV-related pill burden raised by our study respondents are consistent with findings from other studies in SSA. Pill burden can have many different dimensions including the quantity [ 19 ], the taste [ 20 ], and the challenge of taking pills across different social settings [ 32 ]. In our study, respondents specifically spoke to the challenge of taking multiple pills as well as the difficulty of having to take pills daily, further illustrating the multi-dimensional challenges associated with the simple act of taking a medication.…”

“We did not know what was wrong”—Barriers along the care cascade among hospitalized adolescents with HIV in Gaborone, Botswana

“…Family relationships, engagement with care, experience of isolation, and adherence to ART were also directly impacted by stigma. While stigma significantly complicates care for all persons living with HIV, perinatally infected adolescents have a particularly unique and challenging experience of stigma [ 26 , 27 ]. These adolescents transition from dependence on caregivers (who may themselves be facing severe illness, mental health issues, poverty, stigma, and isolation); to learning their status; coping with illness or death of family members; navigating peer relationships; and developing autonomy in care; all while undergoing the developmental transition of adolescence and into young adulthood.…”

Retention and adherence

“…In some contexts, there may be high initial attrition from HIV care prior to engagement with AFS [8,53,54,76,80,81]. Furthermore, stigma, psychosocial issues, family and community factors may be central to disengagement, and must be mitigated to realize optimal adolescent HIV outcomes [9,58,59,75]. In adult studies, community-support models have shown promise in addressing stigma and other social factors while facilitating care [73**,82].…”