Southern African Journal of HIV Medicine

ISSN: (Online) 2078-6751, (Print) 1608-9693

Page 1 of 7 Original Research

Challenges to HIV treatment adherence amongst

adolescents in a low socio-economic setting
in Cape Town

Authors: Background: Despite the successful rollout of anti-retroviral therapy (ART) and steep declines
Brian E. van Wyk1
in HIV incidence in South Africa, this has not been the case for adolescents (10–19 years).
Lee-Ann C. Davids1
Adolescents on HIV treatment have lower rates of viral load suppression and adherence
Affiliations: compared to adults and children.
1
School of Public Health,
Faculty of Community and Objectives: This article reports on the adherence challenges faced by adolescents
Health Sciences, University receiving ART in a primary health care clinic in a low socio-economic urban setting in
of the Western Cape,
Cape Town.
Cape Town, South Africa
Method: An exploratory qualitative design was employed where data were collected
Corresponding author:
Brian van Wyk, through four focus group discussions with adolescents (n = 15) who received ART at a
bvanwyk@[Link] primary health care clinic in a low socio-economic urban setting in Cape Town and followed
up with eight individual, semi-structured interviews with two adolescents from each focus
Dates:
group. Two key informant interviews were conducted with health workers at the clinic.
Received: 26 June 2019
Accepted: 24 July 2019 Audio data were digitally recorded and transcribed verbatim. Data were analysed using
Published: 28 Oct. 2019 content analysis.

How to cite this article: Results: School commitments, strained teacher–learner relationships, negative household
Van Wyk BE, Davids L-AC. dynamics and ill treatment by non-biological caregivers were reported as major barriers to
Challenges to HIV treatment adherence. In addition, poor service delivery, missing or misplaced files and long waiting
adherence amongst
adolescents in a low times came under major criticism. Fear of unintended disclosure of HIV status, stigma and
socio-economic setting in discrimination, treatment fatigue and having unstructured lives negatively influenced
Cape Town. S Afr J HIV Med. adherence. Having a strong social support system and having life goals and ambitions were
2019;20(1), a1002. https://
motivators to remain adherent.
[Link]/10.4102/sajhivmed.
v20i1.1002 Conclusion: This study highlighted the complexity of ART adherence in the midst of juggling
Copyright: school, home life and personal life goals and aspirations. Interventions to improve adherence
© 2019. The Authors. should address psychosocial factors such as treatment fatigue, disclosure and family and
Licensee: AOSIS. This work household dynamics, in addition to streamlining service delivery between the school and
is licensed under the
clinic.
Creative Commons
Attribution License. Keywords: HIV; AIDS; adolescents; youth; adherence.

Introduction
Background
Globally, there are 2.1 million adolescents (10–19 years) estimated to be living with HIV in 2016,
which accounts for 6% of all people living with HIV.1 The successful scale-up of antiretroviral
therapy (ART) and Prevention of Mother To Child Transmission (PMTCT) programmes has led to
the improved survival of perinatally infected children – who are now the ‘first generation’ of
children with HIV entering adolescence.2 Despite improved access to ART and steep declines in
HIV incidence and HIV-related mortality globally, HIV-related mortality amongst adolescents
(15–19 years) has increased by about 50% between 2005 and 2012.3,4

In 2015, HIV was the second leading cause of mortality amongst adolescents globally and the
Read online: leading cause of mortality in sub-Saharan Africa.5 The World Health Organization (WHO)
Scan this QR argues that the reason for this statistic is partly because of insufficient prioritisation of
code with your
smart phone or adolescent health in national health programmes, poor provision of appropriate HIV testing
mobile device and counselling (HCT) services and substandard follow-up care for adolescents who test
to read online.
HIV positive and who require ART.4 Further, it is widely reported that even when adolescents

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 Page 2 of 7 Original Research

do access ART, adherence and retention in care and The majority of the youth who access this facility come from
treatment outcomes are poorer compared to adults.6 the high school and primary school that are adjacent to the
facility and utilised the clinic facilities before or after school.
Poor adherence to ART is one of the most significant The number of adolescents who access the clinic for ART
challenges in ensuring patients achieve and maintain viral and HIV care is not known because routine HIV data are
load suppression.6 Factors associated with poor adherence reported for paediatric (under 15 years) and adult (15 years
have been categorised as patient-related, structural, provider- and older) patients. The study was conducted from February
related, disease-related, medication-related or psychological to April 2016.
barriers.7 For adolescents, the transitional life period is
characterised by physiological, psychological and intellectual
development, which poses very unique challenges to Study design
ART adherence.8 The management of adolescents on ART, An exploratory qualitative design13 was employed, because
therefore, has to take cognisance of the complexity of ART adherence is considered a very complex phenomenon
biological and psychosocial changes which take place in the and requires an in-depth understanding of the socio-cultural
life of adolescents and its effects on adherence.9,10,11 as well as the biological environment in which the behaviour
occurs.
Research problem
It is posited that, amongst others, the reason for the poor Study population and sampling
adherence amongst adolescents (15–19 years) is because the Adolescents between 10 and 19 years who were registered to
transition from paediatric to adult HIV care programme is receive ART at the primary health care clinic in 2015–2016
not well managed.3 However, there is a paucity of behavioural and who were on ART for at least 6 months constituted the
research to give insights into what the challenges and barriers target study population and were subjected to purposive
are that adolescents with HIV face when receiving treatment
sampling. The inclusion criterion of 6 months on ART was
in the adult ART programme.10
chosen, because we wanted to explore participants’ adherence
behaviour and experience on ART. Twenty-six participants
Research aim were identified as eligible for inclusion to the study from
The aim of the study was to describe challenges to living with their clinic files. However, only 15 participants were reachable
HIV and adherence to ART amongst school-going adolescents and consented to participate in the study. Socio-demographic
who receive ART at a public primary health care clinic in characteristics such as age and sex, clinical characteristics
2015–2016 in a low economic urban setting in the Western such as indications of adherence and initiation date of ART
Cape province of South Africa. were extracted from patient folders to identify eligible
participants. A summary of characteristics of adolescent
Methodology participants is presented in Table 1. Participants’ adherence
was identified as ‘poor’ or ‘good’ from the doctor’s notes in
Study setting the patient folder. All participants in the study were
This study took place at a municipal primary health care perinatally infected.
clinic in an urban residential area (township) in the greater
Cape Town area, where the participants received HIV
treatment services. The township is home to a predominantly Data collection
African community.12 During the previous political regime Data were collected through four focus group discussions
(apartheid), this community was largely marginalised (FGDs) and eight individual interviews in a language of the
and exploited. The area spans 13.46 km2 and has a total participants’ choice, that is, English or isiXhosa. All data
population of 64 269, of which 96.3% are African people,
2.7% are mixed race people and 0.2% are white people. It is TABLE 1: Characteristics of adolescent participants (N = 15).
part of the Cape Town metro that carries the heaviest burden Variables Number of participants
of HIV disease in the Western Cape with a prevalence of Age (years)
5.2% in 2012.12 10–14 7
15–19 8

The clinic provides immunisation services, care for sick Sex

Male 6
babies, TB treatment for drug susceptible and drug-resistant
Female 9
TB and HIV care for adults and children (wellness care and
Years of ART
ART). It also provides antenatal care and family planning 6 months–1 year 6
services. The clinic is open Monday to Friday from 07:30 to More than 1 year 9
16:30. The clinic is staffed by a pharmacist, two resident Reported adherence
doctors, nurses, admin staff and a psychologist who comes to Good 9
the clinic once a week. No dedicated adolescent services are Poor 6
provided. ART, antiretroviral therapy.

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were digitally recorded and transcribed verbatim. The the trustworthiness of our study.13 The researchers held several
researcher (LD) facilitated the FGDs and individual meetings to debrief during data collection and analysis of
interviews and was assisted by an isiXhosa-speaking interviews. Transcripts were shared amongst the researchers
interpreter. isiXhosa transcriptions were translated to to check for quality and to check coding and formulation of
English. The researcher (LD) was a medical doctor, who themes. Disagreements were discussed until consensus on
worked in the HIV programme in City Health and conducted themes was reached. An independent person was used to
the current research towards her master’s degree. transcribe the interviews and FGDs. Translation from isiXhosa
to English was done by a first language speaker in isiXhosa,
The focus groups were divided according to gender and age with master’s level qualification in public health.
as follows:
• Females, 10–14 years old – 3 participants Ethical considerations
• Males, 10–14 years old – 4 participants Ethics clearance for the study was provided by the University
• Females, 15–19 years old – 6 participants of the Western Cape Biomedical Research Ethics committee
• Males, 15–19 years old – 2 participants. (Registration number: 15/7/254) and approved by City
Health (ID number: 10537). All information was treated
Focus groups were age and gender aggregated, to allow confidentially, and all participants’ anonymity maintained.
free sharing within the group with a similar demographic Participation in the research was voluntary, and upon
or peer group. The FGDs were held in a meeting room in obtaining informed consent from all participants, and parents
the facility. or guardians (if adolescent was younger than 18 years).

Two participants from each FGD, who were identified to be Results

willing to share more valuable insights, were approached for
follow-up individual interviews. In the case of FGD 4, both In this study, several barriers and one facilitator of
participants agreed to be interviewed. The interviews and adolescents’ ART adherence were identified. A presentation
FGDs were semi-structured, with open-ended questions and of these factors follows below.
prompts. An interview guide was compiled for this purpose
in order to ensure standardisation across focus groups. Barriers to adherence
The reported barriers to adherence were school, social, health
In addition, two key informant interviews were conducted
services, treatment- and patient-related factors.
with nurses who worked in the HIV programme in the clinic.

School factors
Data analysis School factors such as school (work) commitment,
The interviews were analysed manually making use of communication with school teachers and negative teacher
content analysis.13 Analysing the data started with reading attitudes were found to play a deterring role in accessing the
and re-reading the transcripts several times. This was clinic, disclosure and adherence to ART. Participants often
performed concurrently with reading the field notes, personal expressed feeling conflicted between school commitments
reflections and reading entries from my research diary. and the need to attend clinic appointments. Even though
there was a school adjacent to the clinic, many participants
On reading a transcript for the third time, the researcher attended school elsewhere:
(LD) made pencil notes in the margin of all the main issues ‘It would be nice for us to come at our own time, so that we do
that relate to adherence to treatment which came out from not have to miss our school work. That way we can be able to
the text. The researcher was as inclusive as possible and balance our life. Your school work doesn’t suffer because of the
also considered the things which were not being said such clinic appointments, and vice versa.’ (Group 4, male, 18)
as suggestive statements and links between statements in
different parts of the interview. Then, the list of all codes In addition, the need to communicate attending regular clinic
was transferred onto a separate page. In the next step, visits to teachers posed a significant barrier to attending
the researcher re-wrote the list of codes, but this time regular clinic follow-ups as they feared unintended disclosure
highlighting codes which were duplicated or emphasised which may potentially lead to stigma and discrimination:
by the participants. Similar codes were then grouped ‘Okay my life orientation teacher is not a friendly person. She
together, and in the last step, themes were developed. A likes to shout, beat and [is] always angry. When she is angry,
consensus was reached between the researchers (LD and she says a lot of things out of anger; imagine now if you tell her
BVW) on the themes and codes. about your status, and when she is angry she burst out in
front of everyone. The best way is to keep this to myself.’
(Group 4, male, 16)
Trustworthiness ‘It does not sit well with me, because people will be suspicious,
We followed Lincoln and Guba’s criteria for credibility, they will have questions about my frequent visits to the clinic.
transferability, dependability and confirmability to enhance That does not make me feel right.’ (Group 4, male, 18)

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Social factors Differential treatment and verbal abuse by health care

A lack of financial support was reported to have a negative workers towards patients who had defaulted or missed
impact on ART adherence, as participants often did not have appointments deterred adolescents from returning to the
money to pay for public transport to the clinic: clinic to re-start treatment:
‘Oh … maybe I can use it [financial support] for a taxi fare to Participant: Is that I am scared because it’s been a while
collect my medication.’ (Group 4, male, 18) since I came to the clinic.
Facilitator: And what are you scared of?
Participants cited negative relationships with non-biological
Participant: Like the doctor is going to shout at me
caregivers as a barrier to adhering to ART with some orphans
even saying they defaulted ART in an attempt to end their Facilitator: Anything else?
lives and be with their deceased biological parents: Participant: The doctor will shout at me, and I will have to
wait at the clinic since they will start with the
‘Yoh, when I am feeling bad, I stop taking my pills. For
non-defaulters. That makes me angry. (Group 4,
example, when I have quarrelled with my mother, sometimes
she says things that are not so nice. Like saying she never male, 18)
infected me. My mother is not my biological mother mos. My
biological parents are dead. So when she talks like that I feel A key informant admitted that often the unique attributes of
lonely and I feel bad, I stop taking the pills because I also want adolescents were not completely understood by health care
to die.’ (Group 4, male, 18) workers and that this impacted on service delivery to this
group and resultant adherence. They were of the opinion that
Furthermore, adolescence is characterised by a desire to fit in. the health care system should be set up in such a way so as to
Some respondents reported feeling like outcasts amongst focus on the unique needs of adolescents:
their immediate family because they were the only ones who
‘I don’t think we have systems in place yet because there is
were HIV positive: nothing that focuses on them (adolescents). They are just in
‘I would not feel different from them [if I was HIV negative]; now another group of adults taking ARVs so there is nothing focusing
I feel like an outcast. I am the only person with this thing [HIV] specifically on assisting them so I would say we do not have a
and I do not belong here. I feel like staying away from them … system that really supports them maybe if we could establish
I wish I could stop taking medication [ART] and be like them.’ something that really focus on them because [they] are just
(Group 4, male, 18) dumped among the adults because they are just part of the whole
group who is taking the ARVs.’ (Nurse)
Health services factors
Long waiting times at the health facility were mentioned Treatment-related factors
by all participants as a deterrent to adhering to clinic Treatment fatigue was mentioned as a profoundly significant
appointments (picking up medications), as these interfered barrier to adherence by all participants:
with attending school that day: ‘I sometimes feel that this thing that I have to take the pills every
‘… Sometimes if you come here at half past 8 and the doctor day does not sit well with me, I just get bored and feel like I could
doesn’t attend you. … Doctors can make you wait for a very long just throw them in the bin.’ (Group 1, female, 13)
time before they can attend you. You can come here at 8am and ‘Because it has been a while since I started taking the pills,
they only start to attend to you at 9. Mind you, you will go home I started when I was staying in Mandela at Worcester, but I was
at 4 that is why I get bored.’ (Group 1, female, 13) not used to them by then. I always ask mom and my sister,
when I will ever stop taking these pills and my sister says, you
In addition, participants feared that the flow of patients at will take them till you die. So that is why I do not like them.’
this health facility may lead to unintended disclosure of (Group 1, female, 13)
their HIV status, because the area in which you waited in
the clinic gave clear indication of the services you were Participants in this study found the treatment routine
coming for: associated with ART extremely rigid and were frustrated by
the fact that apparently no leniency was allowed:
‘One time I came to fetch my medication and I saw my
neighbour. Now she knows [I am HIV positive] because it’s ‘Yah, I also miss them sometimes. I am a playful person. So at
obvious that people who wait this side are HIV positive.’ times I miss my time and I do not want to take them after that
(Group 4, male, 16) time because I do not know if they will have negative effects
after.’ (Group 4, male, 16)
Missing and misplaced files also served as a major barrier to
adhering to ART as adolescents would be told by clinic staff Patient-related factors
to return to the clinic on a different day to collect their The dynamics of disclosure played a pivotal role in
medication: ART adherence amongst these participants. The majority of
‘I do go home without help, they keep losing my folder and participants preferred selective disclosure where they chose
sending me home and ask me to come back tomorrow. When I to disclose their HIV status to some people but not to others.
come again, they will say it is you again, and they are not keen to Many participants feared rejection, stigma and discrimination
help me. Mind you I ran out of medication.’ (Group 3, female, 15) if their status is known. Therefore, participants chose not to

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disclose their HIV status or that they are on treatment to I am tired of taking it they encourage me to continue. They
friends, even when they sleep over: always check if I take my treatment and they will notice that I
am not taking it. We are such a close family but I am closer with
‘I don’t want to disclose my [HIV] status to my neighbour or to
my mother.’ (Group 4, male, 16)
my friends. I want to disclose my status only to my family.’
(Group 3, female, 17) ‘Yah because I feel like I am free, even when he [my friend] visits
my place or I visit his place I feel free to take my medication.
Furthermore, some of the younger participants did not When I am sleeping over at his place, when I say I am going to
take my pills he understands and even remind me some days.’
disclose their status because their parents forbade them to do
(Group 4, male, 18)
so. This may be because if an adolescent discloses their HIV
status they may also indirectly be disclosing their parent’s
HIV status: Discussion
‘Because my mother told me that I must not tell anyone [about my The findings of our study indicate three extended themes,
HIV status].’ (Group 1, female, 10) namely the conflict between the school and clinic, the need
‘They [my parents] prohibit us from talking about it [our HIV status].’
for HIV-competent households and adolescent-friendly HIV
(Group 2, male, 14) services.

Many participants felt that no harm would come to them if Conflict between school and clinic
they miss taking their medication on occasions. They would
The importance of keeping adolescents living with HIV in
rather have fun with friends and have unplanned sleepovers
school has been expressed by researchers and social
following parties than come home to take their medication.
activists, because education reduces the vulnerability of
The participants reported that they do not make provision
girls and instils hopefulness for the future in all
to take their medication with them in the event of social
adolescents.14,15,16 It is thus concerning that this study reports
functions:
conflicted commitments to school attendance and making
‘There are times when there is a party somewhere and my clinic appointments. In addition, the need to communicate
friends will be attending and I also have to go with them. In
attending regular clinic visits to teachers posed a significant
those instances we come home the following day, and I will
barrier to attending regular clinic follow-ups as they feared
miss my pills. Those gatherings are fun, I can’t leave fun mos.’
unintended disclosure which may potentially lead to stigma
(Group 4, male, 18)
and discrimination. The findings of the study are in keeping
‘Sometimes, like holiday like December like its few party. And
with the literature which suggests that mainstream schooling
so like if I was at a party with friends, like maybe I am whatever
may not necessarily always have a positive impact on
place with my friends but my friends did not know I was
HIV positive. So when it was 9 o’clock it was difficult to just
adherence. In this study, the routine of schooling also made
leave. So I would just think argh, so what if I don’t take them, clinic visits difficult and some participants felt that their
nothing will change I will just take them on another day.’ frequent absences may lead to unintended disclosure of their
(Group 3, female, 15) HIV status. It is well documented that if adolescents disclose
their status to a trustworthy person or people, they are more
Some participants reported feelings of being alone and not likely to receive help in the form of knowledge and resources
normal or dirty because they were HIV positive and have to to help them cope with a HIV diagnosis and to access and
take medication: remain in HIV care.4,5 We recommend that educators should
‘To be like a normal person, when I am taking these ARVs I don’t be sensitised – HIV competent – to handle HIV disclosure of
feel like a normal person because everybody does not drink learners with sensitivity and understanding.
these pills. I feel like I am the only one here that drinks these
pills.’ (14-year-old male)
HIV-competent households
‘… It is me alone at my home that is drinking the medication and
A lack of financial support and negative household dynamics
that it makes me … it makes me feel very lonely.’ (14-year-old male)
were found to have a negative impact on ART adherence.
‘Not now like last year a lot because I feel bored and I feel no The findings of the study are thus in keeping with the
future. I am dirty I feel like I take the pills to the toilet and flush
literature on the positive effects of financial support and/or
[the pills].’ (Group 3, female, 15)
income security of households on adherence amongst
adolescents.4,15 In our enquiry, negative household dynamics
Facilitators of adherence had a detrimental effect on reported ART adherence. Some
Receiving social support from family members, particularly participants reported feeling like outcasts in their family as a
siblings, and friends encouraged participants to remain result of being the only family member who was HIV
adherent to their ART: positive and on treatment. This was also the reason they
‘Okay we are four, it’s me, my mom, and my two sisters. But gave for sometimes feeling like ending their lives by not
I am close to my mom. Me and my big sister we quarrel a lot, taking their medication. The findings are in keeping with the
even out of nothing. She knows about my treatment but when literature that identifies parenting and family dynamics as
we have fights she doesn’t say anything about it, even when playing a pivotal role in facilitating adherence to ART.4,17,18

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Adolescent-friendly HIV services that could be mirrored at implementation level between the
school and the clinic.
Our study found health systems barriers to ART adherence
in the form of long waiting times and missing or misplaced
Interventions to improve adherence should address
files, and the risk of inadvertent disclosure of HIV status.
psychosocial factors such as treatment fatigue, depressive
These barriers have been reported previously and are
symptoms, disclosure and family and household dynamics
not unique to adolescents.19,20,21,22 Literature recommends the
amongst adolescents. In other facilities in the Western
integration of youth-friendly services such as evening
Cape province, family clinics and youth clubs have been
clinics, adolescent clinic days and youth-friendly waiting
areas within ART programmes.23 implemented to boost adherence. Future studies should seek
to explore how these initiatives could be mainstreamed
across all facilities in the province.
Reconciling adolescence and taking medicine
All participants reported treatment fatigue as a barrier to Limitations of the study
adherence. Participants in this study were frustrated that the
treatment routine was extremely rigid and that no leniency This study is of limited scope, because it was conducted
was allowed. This is in keeping with the literature that towards the fulfilment of requirements for a master’s degree
identified treatment fatigue as a major factor impacting on with coursework. The sample size was relatively small, and
older adolescents’ ability to remain adherent to a treatment data saturation was not achieved. The sample was drawn
regimen.24 There was a suggestion from the older adolescents from adolescents who were still in care; therefore, some
in this study that having ART-free weekends would greatly measure of adherence was present. Valuable lessons about
improve their adherence.25 adherence challenges might be missed because those who
defaulted from treatment were not included in the study.
The nature of disclosure remains a pivotal role in ART
adherence as also reported in this study. The participants in Acknowledgements
this study preferred selective disclosure where they chose to
disclose their HIV status to some people but not to others, Competing interests
which is in line with the current WHO guidelines.4 Our The authors declare that they have no financial or personal
study found that participants reported improved adherence relationships that may have inappropriately influenced them
once their HIV status had been disclosed to them and they in writing this article.
have disclosed their HIV status to supportive friends. These
findings are congruent with the literature that says if
adolescents disclose their status to a trustworthy person or
Authors’ contributions
people, they are more likely to receive help in the form of L.-A.C.D. conducted the research and wrote the first draft.
knowledge and resources to help them cope with a HIV B.E.v.W. supervised the research, revised subsequent drafts
diagnosis and to access and remain in HIV care.4,26 and finalised the manuscript. All authors approved the final
version of the manuscript.
Our study found indications of depressive symptoms
through participants reporting feelings of being alone and
dirty (self-stigma) and contemplating ending their lives.
Funding
This finding is consistent with the literature that reports This research received no specific grant from any funding
higher prevalence of emotional and behavioural problems agency in the public, commercial or not-for-profit sectors.
amongst adolescents living with HIV compared to other
high-risk groups.27,28 A meta-analysis reports that patients
Data availability statement
with depressive symptoms were 42% less likely to achieve
optimal adherence to ART regimen.29 Data sharing is not applicable to this article as no new data
were created or analysed in this study.

Conclusion
This study highlighted the complexity of ART adherence in
Disclaimer
the midst of juggling school, home life and personal life The views and opinions expressed in this article are those of
goals and aspirations amongst a sample of school-going the authors only.
adolescents on ART in a low socio-economic urban township
in the Western Cape. Whereas it was encouraging that the References
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