‘‘It’s my secret’’: Barriers to paediatric HIV treatment in a poor rural South African setting
E.W. Kimani-Muragea,b*, L. Mandersonc,d, S.A. Norriseand K. Kahnb,f,g
aAfrican Population and Health Research Center (APHRC), Nairobi, Kenya;bMRC/Wits Rural Public Health and Health
Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand,
Johannesburg, South Africa;cSchool of Psychology and Psychiatry, Faculty of Medicine, Nursing and Health Sciences, Monash
University, Victoria, Australia;dSchool of Public Health, Faculty of Health Sciences, University of the Witwatersrand,
Johannesburg, South Africa;eMRC/Wits Developmental Pathways for Health Research Unit, Department of Pediatrics, School
of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa;fUmea˚ Centre
for Global Health Research, Department of Public Health and Clinical Medicine, Umea˚ University, Umea˚, Sweden;gINDEPTH
Network, Accra, Ghana
(Received 31 December 2011; final version received 22 October 2012)
In South Africa, a third of children born are exposed to HIV, while fewer undergo an HIV confirmatory test.
Anti-retroviral therapy (ART) coverage among children remains low-despite roll-out of the national ART
programme in South Africa in 2004. This study sought to understand critical barriers to seeking HIV-related care
for children in rural South Africa. Data presented in this article derive from community-based qualitative
research in poor rural villages in north-east South Africa; this includes 21 in-depth interviews in 2008 among
caregivers of children identified as HIV-positive in 2007 from a randomly selected community-based sample.
Using NVIVO 8, data were coded and analysed, using a constant comparative method to identify themes and
their repetitions and variations. Structural barriers leading to poor access to health care, and social and systems
barriers, all influenced paediatric HIV treatment seeking. Of concern was the expressed need to maintain secrecy
regarding a child’s HIV status to avoid stigma and discrimination, and misconceptions regarding the course of
HIV disease in children; this led to a delay in seeking appropriate care. These barriers need to be addressed,
including through focused awareness campaigns, improved access to health care and interventions to address
rural poverty and development at both household and community levels. In addition, training of health care
professionals to improve their attitudes and practice may be necessary. However, this study only provides the
perspective of the caregivers; further studies with health care providers are needed to gain a fuller picture for
appropriate policy and practice guidance.
Keywords: ART; barriers to health care; children; HIV; rural South Africa
There has been a steady decline in the prevalence of
paediatric HIV in South Africa in the past decade
(Shisanaetal., 2005,2009).However,nearly half(44%)
of the mortality of children B15 years is HIV-related
(Dorrington, Johnson, Bradshaw, & Daniel, 2006).
While some third of infants are HIV-exposed, fewer
undergo the confirmatory viral detection test [HIV
DNA PCR test (Meyers et al., 2007)]. Anti-retroviral
therapy (ART) coverage for children remains low
tion of HIV stage and socio-economic barriers (Feucht,
HIV-related care for rural South African children.
The study, conducted in a poor rural community of
Tsonga-speaking people in Mpumalanga Province,
South Africa, was nested within the Agincourt health
and socio-demographic surveillance system (HDSS;
Kahn et al., 2007). There is high migrant labour,
unemployment and poverty, with limited access to
public health care and transport (Collinson, 2010;
Kahn et al., 2007). A third of pregnant women
visiting public clinics are diagnosed as HIV-positive
(National Department of Health, 2011).
In 2007, we conducted community-based volun-
tary HIV testing and caregiver counselling with
disclosure for 880 children aged 1?5 years, randomly
selected, in the rural Agincourt sub-district. We used
two concurrent rapid HIV tests ? Uni-GoldTM
(Trinity Biotech, Ireland) and DetermineTM(Abott,
Germany). Children with HIV-positive or indetermi-
nate results were referred to community health
facilities for further investigations, support and
treatment. One year later (in 2008), we followed up
the HIV-positive children (n?35). Caregivers who
consented (n?31) responded to a semi-structured
*Corresponding author. Emails: firstname.lastname@example.org; email@example.com
AIDS Care, 2013
Vol. 25, No. 6, 744?747, http://dx.doi.org/10.1080/09540121.2012.748865
# 2013 Taylor & Francis
questionnaire on socio-demographics, child’s health
status, health seeking and feeding. Caregivers aware
of the child’s positive HIV status (n?22) participated
in in-depth interviews on attitudes and reactions to
knowing the child’s HIV status, experiences in caring
for an HIV-positive child and access to ART- and
HIV-related support. Interviews were conducted by
local Tsonga-speaking fieldworkers and were tape-
recorded (Kimani-Murage, Manderson, Norris, &
Transcribed files were imported into NVIVO 8
software (QSR International Pty, Ltd.) for coding.
Analysis was inductive and drew on respondents’
narratives, with constant comparison across inter-
views to identify themes and variations (Ryan &
Bernard, 2003). Meta-codes and primary themes were
identified and discussed with all authors to ensure
consistency of understandings and interpretation.
Ethics approval was granted by the University of
the Witwatersrand Committee for Research on Hu-
man Subjects (Medical). Signed informed consent was
obtained from each caregiver.
Of 841 consenting caregivers (96%) in 2007, all but
two elected to receive the test results; only three knew
their child’s HIV status beforehand. Thirty-five
(4.2%) children tested HIV-positive and 1 had
indeterminate results. Thirty-one of 35 caregivers
participated in the follow-up study; two children
had died, one was away with the mother, and one
caregiver declined to participate. Most caregivers
were the biological mothers (n?24); four were
grandmothers, three other female relatives. The
mean age of the caregivers was 33 years (range
18?61), and over half had no formal education or
incomplete primary education.
Three children were initiated on ART by 2008. Eight
other caregivers had sought ART, but this had not
commenced as the child’s immune system was said to
be strong enough, or they were awaiting eligibility
tests. However, primary reasons for not initiating
ART were social, structural, financial and health
system barriers, as described below.
Risks of disclosure and the importance of privacy
While many caregivers disclosed the child’s HIV
status to close relatives, particularly the child’s father,
about half wished to keep it secret. Caregivers
believed that confidentiality would be broken by
local health workers or home-based carers who
follow up those on treatment, and were thus reluctant
to present their child for care. For both child and
mother, disclosing a child’s positive status was
associated with high perceived social costs, including
stigma and discrimination/isolation, with perceived
detrimental effects on the child’s development. Care-
givers reported negative treatment from health work-
ers: ‘‘They were treating me in a bad manner, so I
didn’t go back. The way they talk, it didn’t make me
feel comfortable’’ (Mother, 42 years).
Misconceptions about paediatric HIV and treatment
Health care providers at times advised caregivers that
the child was too young for ART. Caregivers believed
that children could be cured with good feeding,
traditional medicine or stopping breastfeeding, or
that the child’s blood was ‘‘dirty’’ and could be
cleaned. Adults in contrast lacked the time to heal
and so took ART, however, ART was not believed to
cure the disease and so people chose traditional
medicine for children. Traditional healers viewed
children as bewitched, so requiring their treatment:
‘‘I have also gone to the traditional healers, they said
that the child was bewitched. They gave me so many
medicines it’s like I was having a pharmacy’’ (Mother,
34 years). The narrative below elaborates on such
(HIV) means that her blood is dirty...I know that if
I give her this food with energy, in the end, this blood
will be clean; she is still young enough to be cured...
It is easy for a young child to be cured, it is the same
as a child who injured an arm or leg...it is not the
same with an old person...AIDS tablets do not cure
HIV, they quieten it. If you abandon them (ARVs), it
(the virus) will wake up. I think it is better to leave
them. I give her (the child) traditional medicine, it is
killing (the virus)...we syringe her (with traditional
medicine) so that the dirt inside comes out...Pills
(ARVs) are better for me because I am old. (Mother,
High cost of treatment
Caregivers explained that both direct and indirect
costs prevented their seeking treatment. At the time
of the study, ART was available from one public?
private health centre in the study site, distant from
many villages and at district hospitals, even further
away. Antiretrovirals (ARVs) were free, but people
had to pay an enrolment fee and pay for drugs for
opportunistic infections; they, therefore, considered
the costs of ART prohibitive. Transport costs, long
AIDS Care 745
queues and waiting time all discouraged access.
Access to treatment was also affected by delays in
acquiring test results, including CD4 tests to deter-
mine eligibility. Respondents described having to
return repeatedly to the health facility until they
gave up. Psychological costs related to concerns
about confidentiality and health workers’ negative
Community-based HIV counselling and testing for
children is uncommon in sub-Saharan Africa includ-
ing South Africa, and existing studies are largely
among children already enrolled in HIV programmes
or visiting health facilities (van Dijk et al., 2009; Yeap
et al., 2010). We address this gap by identifying
barriers to paediatric HIV treatment uptake at
community level. Two barriers were especially con-
cerning: caregivers lacked confidence that their child’s
status would be kept confidential and held miscon-
ceptions about HIV disease in children. There is need
to consider how to overcome these barriers to
enhance timely uptake of paediatric ART.
At the time of the study, the South African
National Guidelines recommended that infants be
tested at 6 weeks and accepted for treatment subject
to certain clinical and social criteria (National
Department of Health, 2005). However, only 3 of
35 caregivers knew that their child was HIV-positive,
and there were reports of health workers declaring the
child ‘‘too young’’ for ART. Caregivers consequently
sought traditional treatment. As is widespread, care-
givers believed that traditional healers and medicine
can cure HIV, and consulted healers for many child-
hood illnesses including to clean ‘‘dirty blood’’
(Friend-du Preez, Cameron, & Griffiths, 2009;
Peltzer, 2009; Peltzer, Mngqundaniso, & Petros,
2006). Several caregivers also feared stigma and
discrimination, and, therefore, chose to keep the
child’s HIV status a secret. As noted by others, early
disclosure is critical for prompt health care seeking
but may lead to detrimental effects to child and
mother (Medley, Garcia-Moreno, McGill, & Maman,
Structural barriers affecting health care access
include physical, financial and organisational con-
straints, high levels of poverty (Gelb, 2003), high
unemployment (Collinson, 2010), and the ongoing
socio-economic impacts of HIV/AIDS (Hunter,
Twine, & Patterson, 2007). The South African child
support grant, instituted to alleviate poverty, was
insufficient to adequately support children (Kimani-
Murage et al., 2010); however, caregivers relied on
this because of limited employment opportunities.
Other barriers included distance to health facility,
delays, high costs of seeking care and irregular public
transport (Kahn et al., 2007).
There was a striking lack of awareness and
misperceptions of paediatric HIV disease and treat-
ment, and fear of stigma and discrimination, despite
actions are needed to enhance awareness of paediatric
HIV and treatment, address misconceptions, increase
access to treatment and care and improve attitudes
and practicesof health
research can help determine effective ways of com-
municating health messages. This study focused on
the demand side, and studies of health providers’
views would help complete the picture.
The authors acknowledge funding from the National
Research Foundation (NRF), the Medical Research Coun-
cil (MRC) and the Faculty of Health Sciences, University of
the Witwatersrand, South Africa, where Lenore Manderson
was a Hillel Friedland Fellow in 2008. The Agincourt
health and socio-demographic surveillance system was
funded by the Wellcome Trust, UK (Grants no. 058893/
Z/99/A; 069683/Z/02/Z; 085477/Z/08/Z). Elizabeth Kima-
ni-Murage had a Ph.D. fellowship funded by the Flora and
William Hewlett Foundation, USA and is currently a
Wellcome Trust Fellow; Shane Norris was on a Wellcome
Trust funded fellowship. The authors acknowledge Prof
John Pettifor and Prof Stephen Tollman for senior scientific
advice and guidance. We also appreciate the data collection
and management team, the community mobilisation team
and the study participants.
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