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BACKGROUND: Adolescents and young adults with HIV repeatedly demonstrate low rates of antiretroviral therapy (ART) adherence as well as low rates of viral suppression. Digital health interventions are a promising way to engage adolescents and young adults with HIV to support ART adherence. However, few digital health interventions have been developed and tested with adolescents and young adults in countries like South Africa, where the HIV burden among adolescents and young adults is greatest. Masakhane Siphucule Impilo Yethu (MASI; Xhosa for "Let's empower each other and improve our health") is a comprehensive ART adherence-supporting app for South African adolescents and young adults with HIV. It was culturally adapted using the HealthMpowerment platform. OBJECTIVE: The aim of this paper is to describe the protocol for a pilot randomized controlled trial examining the feasibility, acceptability, and preliminary efficacy of MASI on self-reported ART adherence and social support. METHODS: We will enroll 50 adolescents and young adults with HIV ages 15-21 years. Participants will be recruited from public ART clinics linked to a large government-funded teaching hospital in Cape Town, South Africa. Participants will be randomized 1:1 into either the intervention arm receiving a full version of MASI or the control arm receiving an information-only version of the app (n=25 per arm). Participants will be asked to engage with MASI daily for 6 months. All participants will complete baseline and follow-up assessments at 3 and 6 months. RESULTS: Study screening began in May 2022 and the first participant was enrolled on June 21, 2022. As of June 12, 2023, 81 participants have completed screeners, and 36 eligible participants have been enrolled in the pilot randomized controlled trial. Recruitment is anticipated to last through August 31, 2023, with study activities anticipated through February 29, 2024. CONCLUSIONS: There is an urgent need for innovative interventions to improve ART adherence among adolescents and young adults in settings like South Africa. If found to be feasible and acceptable, MASI could be implemented with adolescents and young adults with HIV in other parts of the country. TRIAL REGISTRATION: ClinicalTrials.gov NCT04661878; https://clinicaltrials.gov/ct2/show/study/NCT04661878. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47137.
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BACKGROUND: Novel smartphone app-delivered interventions have the potential to improve HIV treatment adherence among adolescents with HIV, although such interventions are limited. Our team has developed Masakhane Siphucule Impilo Yethu (MASI; Xhosa for "Let's empower each other and improve our health"), a smartphone app-delivered intervention to improve treatment adherence among adolescents with HIV in South Africa. MASI was adapted to the South African cultural context using the HealthMpowerment platform, an evidence-based digital health intervention developed for and with youth in the United States. OBJECTIVE: We conducted this beta-testing study to (1) explore the initial usability of MASI, (2) examine engagement and experiences using MASI features, and (3) inform refinements to the app and intervention implementation plan prior to a subsequent pilot randomized controlled trial (RCT). METHODS: This study was conducted from August 2021 to December 2021 in Cape Town, South Africa. Beta-testing participants received access to MASI for 3 weeks. A mixed methods approach was used, with brief questionnaires and semistructured in-depth interviews conducted prior to app installation and after 1 week to 2 weeks of app testing. Engagement with MASI was measured through analysis of back-end app paradata, and follow-up in-depth interview guides were tailored to each participant based on their app use. RESULTS: Participants in the beta-testing study (6 male participants, 6 female participants; ages 16-19 years) collectively spent 4.3 hours in MASI, averaging 21.4 minutes per participant over the 3-week period (range 1-51.8 minutes). Participants logged into MASI an average of 24.1 (range 10-75) times during the study period. The mean System Usability Scale score was 69.5 (SD 18), which is considered slightly above average for digital health apps. Thematic analysis of qualitative results revealed generally positive experiences across MASI features, although opportunities to refine the app and intervention delivery were identified. CONCLUSIONS: Initial usability of MASI was high, and participants described having a generally positive experience across MASI features. Systematically analyzing paradata and using the interview findings to explore participant experiences allowed us to gain richer insights into patterns of participant engagement, enabling our team to further enhance MASI. The results from this study led to a few technological refinements to improve the user experience. Enhancements were also made to the intervention implementation plan in preparation for a pilot RCT. Lessons learned from the conduct of this beta-testing study may inform the development, implementation, and evaluation of similar app-delivered interventions in the future.
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Introduction: Of the 1.75 million adolescents aged 10-19 years living with HIV globally, 84% reside in sub-Saharan Africa. This problem is most acute in South Africa, where there are 720,000 adolescents living with HIV (ALHIV). ALHIV navigate the same challenges as other adolescents-such as puberty and first relationships-as well as challenges specific to their HIV-status-including stigma, disclosure, and concerns about HIV transmission. This dual burden calls for tailored sexual and reproductive health (SRH) programs. Here, we qualitatively explore the reflections of South African ALHIV on SRH education, communication, and discussion provided by adults in schools, clinics, and the home related to their unique SRH needs. Methods: This paper reports on qualitative data from a mixed-methods study to inform interventions that meet the SRH needs of ALHIV. In-depth interviews (N = 20) were conducted with ALHIV recruited from two clinics in Cape Town, South Africa. Nine males and 11 females aged 16-19 participated in semi-structured in-depth interviews to discuss their sexual health as ALHIV. The interview guide explored 1) perceived SRH needs; 2) healthy living with HIV; 3) future goals; 4) intimate relationships; 5) psychosocial challenges; and 6) preferred interventions. Data were thematically applied to an iteratively-developed codebook and analyzed by the cross-cultural research team using NVivo 12. Results: These qualitative data reveal the pressing needs among ALHIV for open communication and accurate information about sexuality and HIV, given the risk to themselves and their partners as they enter intimate relationships. Three themes emerged from the data: 1) Intergenerational pressures coming from caregivers, clinicians, and teachers often stigmatize the sexual heath behaviors of ALHIV; 2) When present, open intergenerational communication can provide ALHIV with crucial information, resources, and social support that supports healthy decisions, and 3) ALHIV offer specific ideas about how adults can support their decision-making in the transition to adulthood. Conclusions: Findings highlight adolescents' recommendations for programs involving open communication, stigma-reduction around sexuality, and support from both peer and adult mentors. This study lays the foundation for strategies to improve intergenerational communication about sexual health to promote positive approaches to sexuality for ALHIV.
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Adherence to antiretroviral therapy (ART) and psychosocial support to manage stigma and disclosure is essential for adolescents living with HIV (ALHIV). Peer support groups can help ALHIV and their families live successfully with HIV. This qualitative study aimed to examine adolescent and caregiver perspectives on peer support groups. Three themes emerged: (1) peer support encouraged adherence to ART, (2) serostatus disclosure outside the family was perceived as difficult, and (3) the peer support group fostered fundamental and meaningful peer relationships for ALHIV. Caregivers felt peer support groups increased self-acceptance and adherence for ALHIV across 3 domains: (1) as motivation for families and adolescents, (2) to increase adolescent independence and maturity, and (3) to help adolescents accept their HIV status and live successfully with HIV. These data highlight the importance of psychosocial support groups for ALHIV and caregivers, illustrating the benefits of a safe space with trusted relationships and open communication.
