Developing contents for a digital drug adherence tool with reminder cues and personalized feedback: a formative mixed-methods study among children and adolescents living with HIV in Tanzania

Abstract

Children and adolescents living with HIV (CALHIV) form a significant proportion of people living with HIV (PLHIV). Optimal adherence (>95%) to medication is needed to achieve viral suppression. However, optimal adherence remains a challenge among CALHIV. Digital adherence tools (DAT) like the Wisepill® device have proven feasible among adult PLHIV. Still, there are concerns about unwanted disclosure of HIV status due to content in short message service (SMS) that serve as reminders. We assessed the needs, contents, and acceptability of a DAT intervention among CALHIV. We conducted a mixed-methods study among CALHIV with their parents/guardians. We performed a survey and then purposively selected participants who used the intervention for one month. They received SMS text reminders that differed over time from asking if the medication was taken to more neutral SMS like “take care”. After one month, participants received tailored feedback based on automatically generated adherence reports. Afterwards, we completed exit interviews, in-depth interviews, and focus-group discussions. We analysed quantitative findings descriptively and used thematic content analysis for qualitative data. We included 284 participants in the survey and 40 used the intervention. Among participants who often forgot medication intakes, 93% of adolescents and 83% of children's parents/guardians were interested in receiving reminders. Among participants who used DAT, 90% had good experience receiving reminders and agreed that SMS made them take medication. However, 25% experienced network problems. Participants were happy to use the device. Further, they preferred neutral reminder SMSs that did not mention the word ‘medication’, but preserved confidentiality. Adherence reports inspired good adherence. None of the participants experienced unwanted disclosure or stigmatisation due to DAT. However, 5% of adolescents were concerned about being monitored daily. This study provided insights on how to customise DAT. We will implement this in a clinical trial to assess effectiveness in improving adherence.

The Effect of Real-Time Medication Monitoring-Based Digital Adherence Tools on Adherence to Antiretroviral Therapy and Viral Suppression in People Living With HIV: A Systematic Literature Review and Meta-Analysis

“…23 Multiple studies have shown that RTMM-based DATs are acceptable among PLHIV and are feasible in resourcelimited settings. [24][25][26][27][28] However, the major concern with RTMM-based DATs is the possibility of unwanted HIV status disclosure due to the triggered reminder SMSs and concerns of invasion of privacy. 29 Although most studies have reported good feasibility of the intervention, some have reported technical challenges such as poor network as barriers to effective implementation of RTMM-based interventions.…”