A research report submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in partial fulfillment of the requirements for the degree of Master of Public Health. Johannesburg, June 2017 / Introduction South Africa is grappling with the challenge of providing lifelong treatment, care and support to young people living with HIV (YPLHIV). The 2012 HIV Prevalence, Incidence and Behaviour Survey placed HIV prevalence among young people aged 15-24 at 7.1% (Shisana et al. 2014). Concerns abound around young people, and centre around low testing rates in this age group (Shisana 2014), their propensity for risky behaviours such as unprotected sex, age disparate relationships (Shisana et al. 2014) and high loss to follow up of ART-eligible youth (Cornell et al. 2010, Nglazi et al. 2012; Wang 2011). In the Western Cape province where HIV prevalence is 4.4% (Shisana et al. 2014) Clinic X provides integrated adolescent and youth-friendly health services including HIV counseling and testing, sexual and reproductive health, ART and other services for adolescents and youth aged 12-25 years. Services include facilitator-led support group meetings and private WhatsApp and Facebook groups for HIV-positive youth (van Cutsem et al. 2014). The aim of the study was to explore how social support is experienced by HIV positive young people from Clinic X who participate in support groups at the clinic, on WhatsApp and Facebook and to understand how support group membership is perceived to impact their HIV-related behaviours, if at all, during 2015 and 2016. The specific objectives were to (1) identify dimensions of social support experienced by YPLHIV, aged 18-25, in clinicbased and online support groups at Clinic X; (2) explore perceived social cohesion among YPLHIV aged 18-25 who participate in online support groups compared to those who only participate in clinic-based support groups and (3) explore perceptions of HIV positive young people at Clinic X in Khayelitsha regarding the influence of support groups on their behaviour during 2015 and 2016. Methods A cross-sectional exploratory qualitative study was conducted, namely focus group discussions (FGDs) and in-depth interviews (IDIs). Ethical clearance was obtained from the Human Research Ethics Committee (Medical) of the University of the Witwatersrand in October 2015. The researcher collected data for the study during December 2015 and November 2016 at Clinic X, which is one of two youth clinics in the Khayelitsha Health District of the Western Cape Metro Region. Participants were purposively sampled for the FGD component of the study from the population of young people aged 18-25 years old who attended support group meetings at Clinic X. The researcher purposively sampled interviewees for the IDIs from participants identified during the FGDs. Male and female individuals aged 18 to 25 years old who had been diagnosed HIV-positive, were enrolled in pre-ART or ART care at Clinic X Youth clinic and were participating in a youth club were included. Two FGDs were held, one for users of the online platforms and another for participants in face-to-face youth clubs meetings only. Twenty participants in total were included in the FGDs. Another nine in depth interviews were held with participants purposively sampled from the FGDs. Thematic analysis was used to analyze all data, which were recorded electronically, professionally transcribed and coded using MaxQDA. Key themes from data analysis included types of social support experienced, sense of belonging, desire to remain in the support groups and susceptibility to peer influence. Inductive themes included HIV-related behaviours, barriers to use of online platforms and sources of social support. Results Exploring the dimensions of social support revealed that peers within the youth clubs experienced emotional and informational support during youth club meetings as well as online. Emotional support was underpinned by the youth’s positive affect for each other based on shared experiences and the resultant feelings of being understood by their peers. The youth also received emotional and instrumental support from various other sources: health workers, family, and intimate partners as well as friends. The youth opened up about barriers to their seeking or accepting support from family or online as well as their perceptions about the consequences of the attitudes of individuals in their lives and community members about HIV. Participants’ perceptions about various indicators of social cohesion within the group showed that, while there was a sense of belonging, there were also limits in the extent to which youth felt susceptible to influence from peers in the youth clubs. Youth expressed a desire to remain in face-to-face youth clubs but were ambivalent about continued participation in the virtual clubs. Findings on the third objective revealed that the youth felt that the youth clubs had improved their knowledge and they were confident to maintain health-protecting behaviours. Seeing other youth looking healthy and overcoming challenges also motivated the youth. The behavioural intentions of YPLHIV were underpinned by gendered motivations for maintaining health, with young women being especially motivated by the desire for motherhood. Discussion To the body of evidence, this study contributes a qualitative understanding of how young people living with HIV experience social support online, showing that the dimensions of social support experienced are the same as those of participants of online health forums for other chronic conditions, namely information and emotional support (Gaysyknsky et al. 2014). Further, the study shows that for YPLHIV, online support groups may act as a barrier to the exchange of instrumental support, which research (Atukunda 2017) identifies as a salient need in this context. In seeking to understand why there may be disjuncture between the intention of pre-ART YPLHIV in the study to remain in care and the actual retention reported in numerous studies, the chapter proposes that social comparison, structural determinants and low risk perception may play a role. The major limitations of the study are the short time of engagement and exclusion of adolescents below 18 years of age who access services at the youth clinic. Conclusion and recommendations In conclusion, online peer groups foster peer support among YPLHIV, with implications on their emotional health. Still, more needs to be done to change perceptions about the use of online platforms for social support, design community-focused programmes to address gaps in support and reduce the financial burden on young people using mobile phones for health. / MT2017