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address the various self-management processes, may affect reported sexual activity. Sadly, a number of participants also
both the medical management, for example, adherence and reported sexual abuse, emphasising that clinicians should
the psychosocial outcomes, such as HRQoL. explicitly ask about sexual abuse during history taking.
Further research is needed to explore sexuality and sexual
The study also yielded some descriptive data with regard to risk behaviours amongst ALHIV. A study conducted in
self-management processes and the proximal (adherence and Botswana found that parents’ inaccurate perception of their
sexual risk behaviour) and distal outcomes (HRQoL and adolescent’s sexual relationships was significantly associated
viral suppression). Self-management aspects that participants with more risk-taking behaviours, emphasising the
found challenging concerned knowledge of their treatment, importance of parent–adolescent communication. Our
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for example, names of their ARVs and an understanding of study only found a borderline significant association between
whether they are doing well on treatment or not. It was self-management and consistent condom use; according to
challenging to manage HIV stigma, make decisions about the IFSMT, higher levels of self-management is associated
disclosure and integrate taking treatment into their daily with better health behaviour. Modelling in our study did not
7
routine. indicate a significant association between self-management
and sexual behaviour. This may also be because the self-
Less than half of the participants reported complete adherence management scale used (AdHIVSM-35) did not specifically
in the two Likert scale items in this study. Low adherence focus on sexual behaviour. Future studies should focus on
rates amongst ALHIV have also been reported in other developing instruments specifically for self-management of
studies. 3,28,31 This study supports the theory that low sexual behaviour.
adherence rates are a concern and explains why adherence is
a consistent component of self-management interventions for Bernardin et al. (2013) recommended a culturally appropriate
people living with HIV. Although self-management quality of life measurement as a key outcome for self-
13
interventions that focus on adherence have been shown to management interventions. Currently, there are no reference
13
improve treatment taking behaviour, self-management norms for HRQoL as measured by KIDSCREEN-27 amongst
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interventions must meet a broad range of needs. 13,17 New adolescents in South Africa. All the sub-scale mean scores
interventions to address psychosocial support and mental were in the international range of 45–55, with SDs close to the
health needs of ALHIV are needed. Currently, no single international range of 10. This may indicate the subjective
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adherence strategy has been identified that improves nature of HRQoL as well as the resilience of ALHIV.
adherence amongst ALHIV. 11 Nöstlinger et al. (2015) used the Family and Free Time
(parents and home life) and Friends (social support by peers)
Viral suppression rates (65.1%) in the present study were sub-scales in their study in Kampala, Uganda and Western
similar to other adolescent studies, namely, 32.5% – 76%. 3,32,33 Kenya and reported mean values of 24 (SD 5.7) and 15.6 (SD
Other studies reported non-adherence between 30% and 6.2), respectively, for the sub-scales, which is comparable to
45% 31,32,33 whereas in our study it was between 55% and 62%. the mean values found in the present study. We found that
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This may be because of differences in the measurement of there was a moderately significant relationship between self-
non-adherence and the limitation of the current study that management and HRQoL that is consistent with the IFSMT.
the VL was obtained from routine clinic records and not However, evidence from systematic reviews suggests no
collected at the same time as questionnaires. We found that clear effects of self-management interventions with regard to
non-adherent behaviour mediates the relationship between the HRQoL of young people living with chronic conditions
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self-management and the lack of viral suppression which is or people living with HIV. More research is needed to
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consistent with the IFSMT. Although biological markers have explore this relationship.
been the outcomes for some self-management interventions,
VLs may be specifically related to medication self- Limitations
management, which is only one component of chronic illness
self-management. Self-management interventions may lead The limitations of this study include the cross-sectional
to improvement in the management of symptoms, coping, nature thereof, the reliance on self-report, specifically with
communication, participation and social roles without an regard to adherence and sexual risk behaviours, and the use
effect on biological measures. Researchers should consider of documented VLs. We did not assess cognitive function in
including outcomes such as quality of life or other this study. Cognitive delay may be an important domain to
psychological measures to measure the effect of self- assess and further research with regard to the relationship
management interventions whilst not excluding biological between cognitive functioning and self-management is
measures. 13 needed. Although more than a third of the participants were
not in the correct grade for their age, other factors such as
In this study, almost a third of the participants reported missing school because of ill health or attending appointments
having sex. The percentage is higher than in other studies may also influence educational delay. The timeframe
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amongst perinatally infected adolescents in Thailand, the between the last VL measure and completion of the self-
United States/Porto Rico and South Africa. 32,33,34 The present report questionnaire was not recorded. Although correlation
study included perinatally infected and behaviourally coefficients were not strong, it is similar to what is reported in
infected adolescents, which may be the reason for higher other studies. 23

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