Facilitated WhatsApp Support Groups for Youth Living With HIV in Nairobi, Kenya: Single-Arm Pilot Intervention Study.

BACKGROUND: Mobile technology can support HIV care, but studies in youth are limited. In 2014, youth receiving HIV care at several health care facilities in Nairobi, Kenya spontaneously formed peer support groups using the social media platform WhatsApp. OBJECTIVE: Inspired by youth-initiated groups, we aimed to evaluate the use of WhatsApp to deliver a social support intervention to improve HIV treatment and psychosocial outcomes in youth. We developed a facilitated WhatsApp group intervention (named Vijana-SMART), which was grounded in social support theory and guided by the design recommendations of youth living with HIV. This paper evaluates the intervention's acceptability and pre-post changes in health outcomes. METHODS: The intervention involved interactive WhatsApp groups facilitated by study staff for 6 months, with each group having approximately 25 members. Study staff sent weekly structured messages, and the message content was based on social support theory and encouraged unstructured peer-to-peer messaging and support. We conducted a single-arm pilot among 55 youth living with HIV aged 14-24 years recruited from a government health care facility serving a mixed-income area of Nairobi. At enrollment and follow-up, self-report questionnaires assessed acceptability; antiretroviral therapy (ART) information, motivation, and behavioral skills (IMB); depression; social support; stigma; resilience; and ART adherence. All participants received the intervention. We used generalized estimating equations (GEEs) clustered by participant to evaluate changes in scores from baseline to follow-up, and correlates of participant WhatsApp messaging. RESULTS: The median participant age was 18 years, and 67% (37/55) were female. Intervention acceptability was high. All participants reported that it was helpful, and 73% (38/52) sent ≥1 WhatsApp message. Messaging levels varied considerably between participants and were higher during school holidays, earlier in the intervention period, and among youth aged ≥18 years. IMB scores increased from enrollment to follow-up (66.9% to 71.3%; P<.001). Stigma scores also increased (8.3% to 16.7%; P=.001), and resilience scores decreased (75.0% to 70.0%; P<.001). We found no significant change in ART adherence, social support, or depression. We detected a positive association between the level of messaging during the study and the resilience score, but no significant association between messaging and other outcomes. Once enrolled, it was common for participants to change their phone numbers or leave the groups and request to be added back, which may present implementation challenges at a larger scale. CONCLUSIONS: Increased IMB scores following WhatsApp group participation may improve HIV outcomes. Increased stigma and decreased resilience were unintended consequences and may reflect transient effects of group sharing of challenging experiences, which should be addressed in larger randomized evaluations. WhatsApp groups present a promising and acceptable modality to deliver supportive interventions to youth living with HIV beyond the clinic, and further evaluation is warranted. TRIAL REGISTRATION: ClinicalTrials.gov (NCT05634265); https://clinicaltrials.gov/study/NCT05634265.

"Whenever you need support, you first turn to the group": motivations and functions of WhatsApp groups for youth living with HIV.

Social support is a critical component of achieving positive health outcomes for youth living with HIV (YLWH). Mobile health (mHealth) has significant potential for providing social support to YLWH. However, little is known about the domains of social support most needed by YLWH which mHealth interventions might address. Drawing on the spontaneous creation of WhatsApp support groups by YLWH in Nairobi, Kenya, we characterized Kenyan YLWH's social support needs and potential roles of social media groups in meeting them. We conducted interviews and focus-groups with 68 YLWH, 24 caregivers and 20 healthcare workers, and observed two YLWH-led WhatsApp groups for 6 weeks. Youth reported that existing support systems, including family and healthcare workers, already provided informational and instrumental support. However, they emphasized unmet companionship and emotional support needs, leading to isolation, hopelessness, and medication adherence challenges. Participants identified connection with other YLWH as a unique source of emotional and companionship support that allowed them to feel more secure and less isolated. Interviews and observed WhatsApp chats demonstrated that WhatsApp groups were a desirable medium for companionship support that overcame barriers to in-person connection.

Mobile technology access and use among youth in Nairobi, Kenya: implications for mobile health intervention design.

BACKGROUND: Social media can be used to support the health of underserved youth beyond clinical settings. Young people are avid users of social media, but estimates of smartphone access among youth in sub-Saharan Africa are lacking, making it difficult to determine context-appropriateness of online and social media interventions. METHODS: We conducted a cross-sectional observational survey assessing technology access and use among youth aged 14-24 receiving general outpatient or human immunodeficiency virus (HIV) care in three hospitals in Nairobi, Kenya. Correlates of smartphone access and social media use were evaluated by Poisson regression. RESULTS: Of 600 youth, 301 were receiving general outpatient care and 299 HIV care. Median age was 18 years. Overall, 416 (69%) had access to a mobile phone and 288 (48%) to a smartphone. Of those with smartphones, 260 (90%) used social media. Smartphone access varied by facility (40% at the sub-county hospital vs. 55% at the national referral hospital, P=0.004) and was associated with older age [65% in 20-24-year-old vs. 37% in 14-19-year-old, adjusted prevalence ratio (aPR) 1.58, 95% CI: 1.30-1.92], secondary vs. primary education (aPR 2.59, 95% CI: 1.76-3.81), and HIV vs. general outpatient care (aPR 1.18, 95% CI: 1.01-1.38). Social media use was similarly associated with facility, older age, higher education, and male gender. CONCLUSIONS: These data suggest that smartphone-based and social media interventions are accessible in Nairobi, Kenya, in the general population and youth living with HIV, and most appropriate for older youth. Intervention developers and policymakers should consider smartphone and social media interventions as candidates for youth health programs, while noting that heterogeneity of access between and within communities requires tailoring to the specific intervention context to avoid excluding the most vulnerable youth.

Association of experienced and internalized stigma with self-disclosure of HIV status by youth living with HIV.

We examined patterns of disclosure among youth living with HIV (YLHIV) in Kenya, and the association between self-disclosure and antiretroviral therapy adherence, stigma, depression, resilience, and social support. Of 96 YLHIV, 78% were female, 33% were ages 14-18, and 40% acquired HIV perinatally. Sixty-three (66%) YLHIV had self-disclosed their HIV status; 67% to family and 43% to non-family members. Older YLHIV were 75% more likely to have self-disclosed than those 14-18 years. Of the 68 either married or ever sexually active, 45 (66%) did not disclose to their partners. Those who had self-disclosed were more likely to report internalized stigma (50% vs. 21%, prevalence ratio [PR] 2.3, 1.1-4.6), experienced stigma (26% vs. 3%, PR 11.0, 1.4-86), and elevated depressive symptoms (57% vs. 30%, PR 1.8, 1.0-3.1). The association with stigma was stronger with self-disclosure to family than non-family. Support should be provided to YLHIV during self-disclosure to mitigate psychosocial harms.