| Summary: | 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
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