Globally, 1.6 million adolescents ages 10–19 are living with the Human Immunodeficiency Virus (HIV). Eighty-nine percent of this population resides in sub-Saharan Africa . Despite the introduction of antiretroviral therapy (ART), HIV is still the leading cause of death among adolescents in this region . ART adherence is critical for sustained viral suppression to maintain immune function, which in turn reduces risk of infection and mortality . Conversely, sub-optimal adherence to ART is associated with immunosuppression, development of viral resistance, treatment failure, and increased morbidity and mortality . Several studies conducted in resource-limited settings have found that adherence to ART is lower in adolescents than in the adult population [4–6]. Adolescence is a crucial time for cognitive maturity, identity formation, establishment of independent social relationships, and transition to an autonomous lifestyle [7, 8]. This developmental phase is often inconsistent with the level of responsibility and discipline necessary to meet the demands of a daily treatment regimen.
Adolescence is characterized by the development of cognitive maturity, identity formation, establishment of independent social relationships, and transition to an autonomous lifestyle [7, 9]. Neurodevelopmental research suggests that areas of the brain stimulated by rewards, namely the ventral striatum, medial orbitofrontal cortex, and medial prefrontal cortex [10, 11] reach peak activation in adolescence. As such, adolescents have a heightened response to immediate, small rewards over larger, long-term gains . HIV medication regimens involve taking several tablets every day. For many adolescents, skipping tablet-taking on a given day, when they feel well and can be temporarily unencumbered by their diagnosis, is a more appealing immediate reward than the prospect of remaining healthy in the future. Furthermore, as adolescents develop their identity, those living with HIV may struggle to incorporate their illness and the permanent changes to their lifestyle that it mandates .
Despite having a theoretical understanding of the consequences of non-adherence, adolescents may see such behavior as a way of testing limits and experimenting . Overprotective parenting may conversely encourage adolescents to rebel by not taking their medication, missing medical appointments, or ignoring dietary restrictions suggested in their treatment regimen . This allows adolescents more perceived control over their personal schedules, relief from medication side effects, an increase in savings from not purchasing medication, and temporary freedom from thinking about their illness .
Poverty creates additional challenges for both curbing HIV transmission and promoting treatment adherence. Adolescents facing extreme financial instability are especially vulnerable to risky behaviors that increase access to quick cash, such as transactional sex, which can further promote the spread of HIV . Scarce employment opportunities, low household wealth, and, in HIV-prevalent environments, unstable guardianship following parental illness or death from HIV/AIDS, limit adolescents’ ability to meet their basic needs and save money for medication [14–18].
Financial incentives have been previously utilized to promote both HIV prevention behaviors and ART adherence [19, 20]. Researchers in South Africa demonstrated that access to cash through social protection schemes mitigated risk-taking behavior among adolescents . In Nigeria, cash transfers that incentivized adolescent girls to remain in school reduced risky behavior and HIV acquisition . Furthermore, a randomized controlled trial in Uganda showed that cash transfers of $5–8 per month to cover transportation costs to an HIV clinic increased treatment adherence among adult patients . These studies led us to test the hypothesis that financial incentives may be similarly successful in promoting treatment adherence among adolescent patients.
Peer influence has also been found to be an important factor in adopting behaviors that support ART adherence among adolescents . Peer-led HIV programs and trainings have a positive effect on knowledge, attitudes, normative beliefs, and self-efficacy, all of which are critical in facilitating behavior change [24, 25]. Peer education has been previously leveraged to increase HIV prevention tactics, including testing, counseling, and condom usage among adolescents in South Africa and Ethiopia [26, 27]. The prioritization of peer-led trainings in interventions can offer adolescents knowledge on various life topics and promote positive behaviors more generally.
Evidence for the effectiveness, feasibility, and acceptability of combined financial incentives and peer-led life skills training among adolescents is limited. Adolescents are often not involved in cash transfer programs because they are perceived to have poor judgment or be more likely to experience coercion. In partnership with youth, we developed an integrated financial incentives and peer-led life skills training program called YBank to improve ART adherence among adolescents living with HIV in Rwanda. Our pilot study aimed to assess the feasibility and acceptability of the YBank program among adolescents, caregivers, and clinicians.
We hypothesized that financial incentives in the form of cash transfers, partnered with a peer education and support program, may help to address key barriers faced by adolescents living with HIV in three distinct ways. First, cash transfers help to cushion the social and economic impact of HIV by addressing short-term financial barriers to service access and adherence to treatment regimens. Second, peer-led life skills training helps adolescents to cultivate relationships among peers, use social skills prudently, and foster long-term resilience as they build helpful life proficiencies. Finally, the use of rewards can mitigate behavioral biases, such as present bias (preferring short- to long-term rewards) and default bias (preferring current to new behaviors), which may hinder adherence.
Human-centered design methodology
A human-centered design approach was employed to engage adolescents living with HIV and key stakeholders in the design of the program. We conducted focus group discussions and semi-structured interviews with 16 adolescents ages 12–19 living with HIV who were enrolled in care. We also interviewed 14 caregivers of adolescents with HIV and five healthcare providers working at Centre Hospitalier Universitaire de Kigali (CHUK), an HIV clinic in urban Kigali, Rwanda. Through these sessions, we sought to understand barriers to adherence, perceptions of clinical services, acceptability and feasibility of peer-led life skills trainings, provision of financial incentives to improve adherence among adolescents, and potential ethical issues with this approach. Interview questionnaires and focus group discussion guides were designed with and conducted by youth leaders ages 18–25 who delivered peer support at CHUK. Finally, we iterated upon several ART adherence program prototypes with two peer mentors and 12 adolescents to ultimately co-design a youth-friendly intervention program deemed both acceptable and feasible in this community. The intervention ultimately consisted of two components: financial incentives and peer-led life skills training.
Financial incentives for ART adherence
Small financial incentives were used to promote ART adherence to achieve virological suppression. Other approaches to monitor ART adherence more directly (e.g. patient recall, directly observed therapy, or adherence monitoring devices such as Wisepill) were considered but deemed inappropriate or suboptimal for this context. While the World Health Organization establishes the threshold for having an undetectable viral load at 50 copies/milliliter (copies/mL), our program classified viral load suppression as less than 20 copies/mL, consistent with current Rwandan guidelines at the time of the study. Viral load was tested during clinic appointments at baseline and 12 weeks follow-up, and recorded in the OpenMRS medical records system. Clinic attendance was monitored through review of medical charts and updates from clinic staff.
The incentives structure is summarized in Table 1. The incentives program combined an immediate financial reward with a long-term savings opportunity. Two thousand Rwandan Francs (RWF), approximately $2 USD, was deemed an appropriate incentive for clinic attendance. Of this total amount, 500 RWF (~$0.50) were deposited into participants’ TigoCash mobile money short-term account, where funds were immediately accessible, and 1500 RWF (~$1.50) were deposited into a long-term savings account upon completing the program.
Incentive Structure for YBank Program Participation
Incentive Amount (RWF)
Suppressed viral load
|*Maximum of two such incentives during the pilot study|
|RWF: Rwandan Francs|
Furthermore, if participants demonstrated a suppressed viral load at a clinic appointment, the research assistant deposited an additional 1000 RWF (~$1) into their mobile money short-term account and 3000 RWF (~$3) into their long-term account. If viral load was not suppressed, participants were encouraged to work with their physician to determine whether social and behavioral support was needed to improve adherence, or whether they may require evaluation for drug resistance.
At enrollment, adolescents were given a card for recording savings accrued to their short and long-term accounts. These cards were updated at each study visit when a disbursement was made.
[Table 1: Incentive Structure for YBank Program Participation]
Life skills training
In life skills training sessions, adolescents received guidance from peers on economic empowerment, financial literacy, healthy relationships, and ART adherence. The training materials were developed based on existing financial literacy training programs designed for Rwandan youth by non-profit organizations (GirlHub and Partners in Health), with consultation from experts in adolescent education. Three sessions were held over the course of 12 weeks and covered topics such as spending and saving habits, building a small business, and fostering both professional and personal relationships. These group sessions were held at the clinics and integrated with existing peer support sessions to minimize additional travel time for youth.