Abstract
BackgroundStudies from sub-Saharan Africa (SSA) document how barriers to ART adherence present additional complications among adolescents and young adults living with HIV. We qualitatively explored barriers to ART adherence in Uganda among individuals age 14–24 to understand the unique challenges faced by this age group.MethodsWe conducted focus group (FG) discussions with Community Advisory Board members (n = 1), health care providers (n = 2), and male and female groups of adolescents age 14–17 (n = 2) and youth age 18–24 (n = 2) in Kampala, Uganda. FGs were transcribed verbatim and translated from Luganda into English. Two investigators independently reviewed all transcripts, developed a detailed codebook, achieved a pooled Cohen’s Kappa of 0.79 and 0.80, and used a directed content analysis to identify key themes.ResultsFour barriers to ART adherence emerged: 1) poverty limited adolescents’ ability to buy food and undercut efforts to become economically independent in their transition from adolescence to adulthood; 2) school attendance limited their privacy, further disrupting ART adherence; 3) family support was unreliable, and youth often struggled with a constant change in guardianship because they had lost their biological parents to HIV. In contrast peer influence, especially among HIV-positive youth, was strong and created an important network to support ART adherence; 4) the burden of taking multiple medications daily frustrated youth, often leading to so-called ‘drug holidays.’ Adolescent and youth-specific issues around disclosure emerged across three of the four barriers.ConclusionsTo be effective, programs and policies to improve ART adherence among youth in Uganda must address the special challenges that adolescents and young adults confront in achieving optimal adherence. For example, training on budgeting and savings practices could help promote their transition to financial independence. School staff could develop strategies to help students take their medications consistently and confidentially. While challenging to extend the range of services provided by HIV clinics, successful efforts will require engaging the family, peers, and larger community of health and educational providers to support adolescents and young adults living with HIV to live longer and healthier lives.Trial registrationClinicalTrials.gov Identifier: NCT02514356. Registered August 3, 2015.
Highlights
Studies from sub-Saharan Africa (SSA) document how barriers to ART adherence present additional complications among adolescents and young adults living with Human Immunodeficiency Virus (HIV)
Study population The sample included community advisory board members (CAB); healthcare providers ( “providers”); and patients registered with an urban primary HIV clinic in Kampala, Uganda, an area that is largely representative of other areas in the capital and includes lower-income market areas as well as upscale shopping areas
Four barriers to ART adherence emerged: 1) Poverty limited youths’ ability to purchase food, making it difficult to avoid the side effects of taking ART on an empty stomach; poverty complicated efforts to become economically independent in their transition from adolescence to adulthood; 2) The lack of privacy in school schedules complicated ART adherence; 3) family support was unreliable, and youth often struggled with a constant change in guardianship because they had lost their biological parents to HIV
Summary
Studies from sub-Saharan Africa (SSA) document how barriers to ART adherence present additional complications among adolescents and young adults living with HIV. A 2015 comprehensive review of studies focused on adolescents in sub-Saharan Africa (SSA) identified multiple levels of barriers impacting ART adherence [16] These included sociodemographic factors (e.g., poorer adherence among older adolescents as well as those living in spaces with less privacy such as foster care or orphanages); structural and economic factors (e.g., limited access to food, high cost of transportation, political instability further limiting access to HIV care); psychosocial factors (e.g., limited caregiver supervision, small support networks); individual factors (e.g., forgetfulness); treatment-related factors (e.g., high pill burden, negative side effects, challenging transition between pediatric and adult HIV treatment services); and individual resilience factors (e.g., good adaptive skills and positive expectations for their future were associated with better adherence). A 2018 systematic review of studies focused on adolescents in SSA reported similar findings, identifying stigma, ART side-effects, lack of assistance, and forgetfulness as important barriers; facilitators included caregiver and peer support, and youth having knowledge of their HIV status [17]
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