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
Authors: Swai Iraseni , ten Bergen Lisa Lynn , Mtenga Alan , Maro Rehema , Ngowi Kennedy , Mtesha Benson , Lekashingo Naomi , Msosa Takondwa , Rinke de Wit Tobias F. , Aarnoutse Rob , Sumari-de Boer Marion 
Published: March 2023

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.

Author’s summary

CALHIV are required to take antiretroviral medication on time, every day, for the rest of their lives. That is necessary to suppress the virus and live a healthy life. Maintaining that consistency is not easy. Digital tools that assist in reminding medication time, like the Wisepill device, have proven feasible among adult PLHIV. However, there are concerns about HIV status disclosure due to the contents used in the SMSs. We tested a DAT intervention in which participants used the Wisepill device, received reminder SMS in their phones and adherence reports on how they took medication over a month. We sent SMS contents that differed over time from asking if the medication was taken to more neutral SMS like “take care”. After one month, we asked participants their opinions about the interventions. Most participants were happy to use the device and to receive neutral SMS contents that did not mention ‘medication’ and which preserved their confidentiality. Adherence feedbacks motivated good adherence behaviour. However, some participants experienced network challenges, and 5% of adolescents were concerned about being monitored daily. We will use preferred SMS contents in the clinical trial that will assess the effectiveness of the DAT in improving adherence among CALHIV.