Feature

Breaking Down Barriers to Tell: A Mixed

Methods Study of Health Worker
Involvement in Disclosing to Children That They
Are Living with HIV in Rural South Africa
Hanlie Myburgh, MA*
Esme Calitz, MBChB
Jean P. Railton, MBChB, DMH, FCFP, MMed, Dip HIV Man (SA)
Christina Maluleke, MBChB (SMU), Dip HIV Man SA, MPH (UL)
Elizabeth Mashao,
Patiswa Ketelo,
Geoff Jobson, MDev
Cornelius J. Grobbelaar, MBChB
Helen E. Struthers, MSc, MBA, PhD
Remco P. H. Peters, MD, PhD, DLSHTM,
Dip HIV Man (SA) Hanlie Myburgh, MA, was a Quality Improvement Officer,
Anova Health Institute, Paarl, South Africa, and is now a So-
cial Science Researcher, Desmond Tutu TB Centre, Depart-
Disclosing to a child that s/he is living with HIV is ment of Paediatrics and Child Health, Faculty of Medicine
necessary to promote adherence to treatment and and Health Sciences, Stellenbosch University, Cape Town,
improve health outcomes. Facilitating disclosure be- South Africa. (*Correspondence to: hmyburgh@sun.ac.za).
tween caregivers and children remains a challenge Esme Calitz, MBChB, is a Senior Medical Officer, Anova
for health workers. Understanding how health Health Institute, Paarl, South Africa. Jean P. Railton,
MBChB, DMH, FCFP, MMed, Dip HIV Man (SA), is a Pro-
workers are involved in and perceive the disclosure
gram Manager, Anova Health Institute, Tzaneen, South Af-
process is integral to engaging with such challenges.
rica. Christina Maluleke, MBChB (SMU), Dip HIV Man
We held group discussions with and surveyed 73 phy- SA, MPH (UL), is a Senior Medical Officer, Anova Health
sicians, nurses, and counselors across 16 randomly Institute, Tzaneen, South Africa. Elizabeth Mashao is a
selected facilities in two rural South African health Community Outreach Officer, Anova Health Institute, Tza-
districts, exploring their experiences of supporting neen, South Africa. Patiswa Ketelo is a Data Quality Assis-
disclosure between caregivers and children. Ninety tant and HIV Counsellor, Anova Health Institute, Paarl,
percent of those surveyed agreed that children South Africa. Geoff Jobson, MDev, is a Senior Researcher,
should be informed of their HIV status. Differences Anova Health Institute, Johannesburg, South Africa. Corne-
between categories of health workers regarding lius J. Grobbelaar, MBChB, is a Project Manager, Anova
training, involvement in the disclosure process, and Health Institute, Paarl, South Africa. Helen E. Struthers,
perceived responsibility for disclosure support led to MSc, MBA, PhD, is the Chief Operating Officer, Anova Health
Institute, Johannesburg, South Africa and an Honorary
inconsistent disclosure practices within facilities.
Research Associate, Division of Infectious Diseases and HIV
Disclosure-strengthening interventions must consider
Medicine, Department of Medicine, University of Cape
the composition of the health worker team and the Town, Cape Town, South Africa. Remco P. H. Peters, MD,
role that each category of health worker performs in PhD, DLSHTM, Dip HIV Man (SA), is a Clinical Program
their local settings. Specialist, Anova Health Institute, Johannesburg, South Africa.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. -, No. -, -/- 2018, 1-12
https://doi.org/10.1016/j.jana.2018.04.009
Copyright Ó 2018 Association of Nurses in AIDS Care
2 JANAC Vol. -, No. -, -/- 2018
(Journal of the Association of Nurses in AIDS Care,
-, 1-12) Copyright Ó 2018 Association of Nurses
in AIDS Care
Key words: children, disclosure process, health
workers, HIV
D isclosing to a child that s/he is living with HIV is
emerging as a critical intervention to promote adher-
ence to treatment in pediatric HIV services
(Lowenthal et al., 2014; Madiba & Mokwena,
2012). More than 90% of the world’s 3.5 million
children living with HIV infection live in resource-
constrained settings such as sub-Saharan Africa
(Joint United Nations Programme on HIV/AIDS,
2012). In sub-Saharan Africa, informing perinatally
HIV-infected children about their illness was less of
a priority than ensuring their clinical care, as most
children would not live past the age of 5 years
without treatment (Newell et al., 2004). Subsequent
developments in the availability of antiretroviral ther-
apy (ART) has significantly increased the number of
children who reach adolescence and adulthood, and
highlighted the need to consider what, when, and
how to tell children that they are living with HIV
(Moodley, Myer, Michaels, & Cotton, 2006; Myer,
Moodley, Hendricks, & Cotton, 2006; Wiener,
Mellins, Marhefka, & Battles, 2007). Low
disclosure rates continue to be reported in the sub-
Saharan region (Mutumba et al., 2015), and the issue
remains a challenge for health workers and caregivers
who find that they are ill-equipped for this process
(Madiba & Mokwena, 2012).
The benefits of a systematic, age-appropriate
disclosure process is well documented in the litera-
ture. The process involves sharing partial information
with the child about his/her illness from as early as
2 years of age, and leads up to full disclosure when
the child reaches the emotional and cognitive matu-
rity for HIV to be named (South to South, 2010).
Following such a process has been associated with
improved treatment adherence and outcomes
(Bikaako-Kajura et al., 2006; Nabukeera-Barungi
et al., 2015; World Health Organization [WHO],
2011), mental health and well-being (Wiener et al.,
2007), and more trusting relationships with care-
givers (Mahloko & Madiba, 2012; South to South,
2010; Wiener et al., 2007). Such disclosure also has
the potential to foster the long-term individual
self-management that is required to achieve success-
ful ART outcomes over the course of an individual’s
life (South to South, 2010; Vreeman, Gramelspacher,
Gisore, Scanlon, & Nyandiko, 2013; WHO, 2011).
These benefits remain largely unrealized in
developing health settings where disclosure is
commonly delayed until older childhood or
adolescence (Madiba, Mokwena, & Mahloko, 2013;
Mutumba et al., 2015; Vaz, Eng, Maman,
Tshikandu, & Behets, 2010). Studies with children
have shown that, although they may not know the
name of their illness, they experience anxiety
related to it (Instone, 2000; Wiener et al., 2007).
When disclosure is delayed, it often occurs
accidentally (unguided by health workers or
caregivers), leaving children without the necessary
psychosocial support and information that they need
as they grow up with this lifelong disease (Kidia
et al., 2014; Madiba & Mokwena, 2012; Wiener
et al., 2007).
Telling a child that s/he is living with HIV often
involves a discussion of the social and relational as-
pects of HIV transmission, which could include
disclosure of the biological mother’s status and
‘‘family secrets, including paternity, and parental his-
tory of sexual behavior’’ (Wiener et al., 2007, p. 3).
Caregivers of children living with HIV worry about
the psychological impact of a child learning that
s/he is living with HIV (Vaz et al., 2010; Wiener
et al., 2007) and fear that the child might accidentally
disclose to others (South to South, 2010; Wiener
et al., 2007). These concerns make disclosure an
intimately personal and emotional subject that is
bound up with concerns of moral exposure and the
experience of shame (Bond, 2010). Despite the social
complexity of disclosure to children, studies show
that health workers have an important role to play in
initiating and supporting disclosure between caregivers
and their children (Kidia et al., 2014; Myer et al., 2006;
Woldemariam, 2012). Specifically, health workers can
provide advice about when to start the disclosure
process with a child, help with the content and
delivery of accurate information, and prepare
caregivers to answer questions that may arise from
children during the disclosure process (South to
South, 2010). Yet caregivers may be hesitant to initiate
the disclosure process and health worker lack of
 Myburgh et al. / Disclosing to Children That They Are Living with HIV
training, experience, and confidence in guiding the pro-
cess may cause reluctance to offer assistance to care-
givers (Madiba & Mokgatle, 2015).
South Africa has the largest HIV program globally.
In 2014, 10 years after national rollout of the HIV
program, the Department of Health released guide-
lines on the disclosure process for children and
adolescents modeled on those developed by WHO
(2011); these were later revised to include the disclo-
sure of tuberculosis and noncommunicable diseases
(National Department of Health, 2016). The guide-
lines emphasized the critical role of health workers
in preparing caregivers and children for disclosure.
However, studies conducted in South Africa show
that even trained, experienced health workers are
uncertain about how to implement disclosure prac-
tices, and are more comfortable letting caregivers
lead rather than initiate the process themselves
(Madiba & Mokgatle, 2015; Watermeyer, 2013). In
South Africa, disclosure of an HIV status to a child
is supported in the Constitution and in the
Children’s Act 38 of 2005, which outlined children’s
rights to information and participation in decisions
regarding their health (Le Roux-Kemp, 2013). South
African law stipulates that choosing not to follow a
disclosure process with a child violates, rather than
upholds numerous children’s rights (National
Department of Health, 2016). For many health
workers, however, the issue continues to be shrouded
in uncertainty with regard to the ethical and legal im-
plications of disclosure, their roles and responsibil-
ities in the process, and how to assess a child’s
readiness (Le Roux-Kemp, 2013; Watermeyer, 2013).
Echoing other sub-Saharan settings, there is
limited information available about disclosure prac-
tices in South Africa (Madiba & Mokwena, 2012;
Mahloko & Madiba, 2012; Vreeman et al., 2013);
researchers have reported low rates of disclosure
that range from 27% to 40% (Madiba, 2012; Madiba
et al., 2013; Naidoo & McKerrow, 2015). We aimed
to contextualize the low rates of pediatric disclosure
in South Africa and to make practical
recommendations for strengthening the pediatric HIV
program. Our objectives were to (a) describe health
worker perceptions of pediatric HIV status disclosure,
(b) explore facility practices related to pediatric HIV
status disclosure, and (c) describe health worker
views on their roles and responsibilities in the
3
disclosure process. We add a new dimension to the
subject of disclosure and its implementation in
facility settings by highlighting how involvement in
the disclosure process differs between different
categories of health workers and is dependent on how
the health worker team is comprised.
Methods
Study Setting
Our study was conducted in two rural South Afri-
can health districts between May and July 2015. The
Cape Winelands district (CWD) of the Western Cape
Province offers primary health care services that are
nurse-driven with significant support from roving
physicians. In the Mopani health district in the Lim-
popo Province, primary health care facilities are
nurse driven, with limited physician support. In
both districts, counselors in the HIV program have
been actively involved in providing services (HIV
counseling, testing, and adherence support) since
the start of the program in 2004.
While the two districts are both rural, they have
distinctly different demographic, socioeconomic, cul-
tural, and health service profiles: the CWD has a well-
resourced district municipality that provides health,
education, and public services to a population of
roughly 850,000 residing in towns and informal settle-
ments that are in close proximity. The district literacy
rate is 81.7%, with an antenatal HIV prevalence of
15.2% (National Department of Health, 2017;
Western Cape Government, 2016). The Mopani
district is considered vulnerable with regard to
access to public services such as health, education,
and water and sanitation for its population of
1,000,000. The small, remote settlements,
characteristic of the district, further challenge
service provision. More than 50% of the adult
population is illiterate; the district has an antenatal
HIV prevalence of 24.5% (National Department of
Health, 2017; Republic of South Africa, 2011).
Ethics Statement
Ethical approval was obtained from the University
of Witwatersrand Human Research Ethics
4 JANAC Vol. -, No. -, -/- 2018
Committee (Clearance certificate no. M141178).
Further, approval for the research was granted by
both the Western Cape and the Limpopo Provincial
Departments of Health, and the respective
districts and health facilities where the study was
conducted.
Study Design
Our mixed methods study included a cross-
sectional study and qualitative evaluation. We
randomly selected eight facilities in each health dis-
trict for inclusion in the study. A researcher
completed an assessment in each facility that
recorded the number of pediatric HIV health workers
and the number of children in HIV care. All health
workers involved in pediatric HIV services at these
16 facilities were invited to participate. Participation
required health workers to complete a self-
administered questionnaire and to participate in a
facilitated group discussion with colleagues at their
respective facilities. The informed consent process
was followed with each participant, after which an
informed consent form was signed.
The questionnaire was developed from a preexist-
ing instrument (Woldemariam, 2012) that was adapt-
ed to the local context and study objectives, and
pretested with nurses and counselors employed at
Anova Health Institute with extensive experience in
the field of pediatric HIV and disclosure. The
questionnaire was comprised of 18 Likert-type ques-
tions in English and asked about participant demo-
graphics, training and experience, and knowledge
and perceptions of pediatric HIV status disclosure;
the questionnaire also asked about disclosure prac-
tices at the facility. Participants indicated their agree-
ment with each statement using five response options
(1 5 Strongly Disagree, 2 5 Disagree, 3 5 Neutral/
Unsure, 4 5 Agree, or 5 5 Strongly Agree). The
group discussions allowed health workers the oppor-
tunity to share personal experiences of disclosure and
to reflect on day-to-day practices at the facility.
Definitions
We use the term caregiver throughout the article to
refer to a child’s primary caregiver. Primary
caregivers include one or both biological parents,
relatives, and foster parents. In South Africa and
other developing health settings, biological parents
are often not the primary caregivers of children, and
using the term caregiver allows us to take the variety
of household and care structures into account. For the
purposes of our study, disclosure was understood as
an ongoing process of systematically sharing infor-
mation regarding a child’s HIV status with the child,
starting with partial disclosure and leading to full
disclosure where HIV is named. Any form of commu-
nication or interaction with a child where truthful,
age-appropriate information regarding clinic visits,
diagnosis, or treatment were shared was considered
to be disclosure. Disclosure practices were under-
stood as a shared understanding between health
workers at a facility about when, what, and how to
share information about HIV with caregivers and
children.
Data Analysis
Descriptive statistics are provided as proportions
and were applied to the Likert-type responses by
health worker category, facilities, and districts. In
analysis, we collapsed the Disagree and Strongly
Disagree and the Agree and Strongly Agree response
options, as they expressed similar sentiments. These
analyses highlighted differences in the data within
and across health worker categories and facilities in
each district health system.
Group discussions were transcribed verbatim, and
analysis of the transcripts was led by the first and
second authors, a social scientist and a pediatric
HIV physician, respectively. A deductive, objective-
driven thematic frame was used to explore the data
for factors that could influence the practice of pediat-
ric HIV disclosure at the facility level (i.e., health
worker perceptions of pediatric HIV disclosure,
training and experience, and views on roles and
responsibilities in the disclosure process). Central
and common themes, as well as themes that were
unique to specific participants, were included in the
analysis. To ensure trustworthiness of the data, the
initial conceptualization of findings was compared
with relevant literature and sense-checked with
co-authors who comprised a mix of researchers and
implementing partners involved in the project and
in delivering pediatric HIV services in the facilities.
 Myburgh et al. / Disclosing to Children That They Are Living with HIV 5

This process allowed further analysis and contextual- Importance and Need for Pediatric Disclosure
ization of findings.
Ninety percent (n 5 66) of participants agreed
that children should be informed about their
Results illness. Participants explained that disclosure was
‘‘the right thing to do’’ and was instrumental to
treatment success, with 63 (86%) of the partici-
We recruited a sample of 73 health workers in the
pants believing that a positive relationship between
Cape Winelands (n 5 40) and Mopani Districts
disclosure and adherence to ART existed. ‘‘The
(n 5 33; Table 1), which made up 70% to 90% of pe-
purpose of disclosure is to get [patients] motivated
diatric HIV staff in the 16 facilities. The majority of
. I don’t think you can really treat a patient
participants were women (n 5 68, 93%). Of the three
without some measure of disclosure’’ [Physician,
health worker categories, professional nurses consti-
Facility 2, CWD]. ‘‘If you explain to the child
tuted the largest proportion (n 5 36, 49%), followed
what [HIV] is . that child will understand the in-
by counselors (n 5 30, 41%). Seven physicians, mak-
formation and will take treatment with ease, there
ing up 9.6% of the sample, were from the CWD; in
will be no time wherein the child would ask, ‘Why
Mopani, physicians are generally available at second-
am I still taking this treatment?’’’ [Nurse, Facility
ary and tertiary care levels only and, therefore, were
G1, Mopani].
not included in the Mopani sample. Most participants
The need for disclosure was also tied to the reali-
had been working in the health sector between 6 and
zation that disclosure could not be delayed indefi-
15 years (n 5 38, 52).
nitely. ‘‘How do you explain to a child .‘You must
Our findings revealed tension between four areas
drink these pills, because it is of utmost necessity,’
related to the pediatric disclosure process: (a) its
if you cannot give him a reason why he should
acknowledged importance and need, (b) inadequate
drink it?’’ [Nurse, Facility 5, CWD].
training and experience, (c) fractured and inconsis-
One nurse expressed frustration that nondisclosure
tent practices at facility level, and (d) ambiguous un-
restricted her ability to freely provide care and advice
derstandings of responsibility for disclosure.
to patients. This was compounded by health worker
perceptions of the impending sexual debut of
nondisclosed patients as they neared adolescence,
Table 1. Participant Demographics
which they feared could lead to new infections.
Cape Winelands Mopani Health workers had also experienced negative
n 5 40 n 5 33 reactions to sudden full disclosure with older children
n % n % and adolescents who had not been systematically
Gender informed and prepared. ‘‘The majority of disclosures
Women 37 92 31 94 are not difficult because we start early. The times that
Men 3 7.5 2 6.1
Language
you do have problems . are when you have teen-
Afrikaans 27 68 0 0 agers who have not been disclosed to’’ [Physician,
Xhosa 9 23 0 0 Facility 2, CWD].
Xitsonga 0 0 19 58 As such, all but one of the 73 participants agreed
Northern Sotho 1 2.5 13 39 that disclosure was a process rather than a one-off
Other 3 7.5 1 3.0
event and felt strongly that information about the
Occupation
Physician 7 18 – – illness should be presented systematically to chil-
Nurse 18 45 18 55 dren, from a young age, along with the child’s
Counselor 15 38 15 45 evolving maturity as evidenced in this statement.
Years in health care ‘‘It must be an illness that he grows up with, and
1-5 9 23 8 24 he knows and understands it, rather than hearing
6-15 21 53 17 52
151 10 25 8 24
the first word of it . at 12’’ [Nurse, Facility 5,
CWD].
6 JANAC Vol. -, No. -, -/- 2018

Training and Experience with Pediatric HIV included in presentations on other topics. In the
Disclosure Cape Winelands sample, 24% (n 5 4) of health
workers who had received training felt confident to
Table 2 presents health worker training and expe- support disclosure, while more than half (n 5 14,
rience with pediatric HIV disclosure. The majority 67%) of the Mopani participants who had received
of participants indicated that they were uncertain training indicated feeling equipped to guide the
how or not equipped to guide a caregiver in disclo- disclosure with a caregiver and child. A Cape Wine-
sure. This sentiment was more prominent in the lands participant illustrated these feelings of uncer-
Cape Winelands sample (n 5 34, 85%) than in tainty regarding pediatric disclosure:
Mopani (n 5 20, 61%). The districts reported similar Every time you see shiny little eyes that under-
low levels of pediatric disclosure training (n 5 17, stand what is going on, you think, ‘‘Yes, I am equip-
43% in the CWD; n 5 15, 45% in Mopani), and ped,’’ and every one [of your patients who looks at
none of the participants were aware of national guide- you] with dull eyes . makes you think, ‘‘Oh, no, I
lines for the disclosure process with caregivers and have far too little knowledge about this.’’ [Physician,
children. Training ranged from formal accredited Facility 2, CWD]
training sessions hosted by external development More than half of the participants (n 5 41, 56%)
organizations to short informal training sessions indicated that they had been involved in the disclo-
sure process with a caregiver and child. The largest
Table 2. Health Worker Training and Experience with proportion (n 5 15, 37%) had been involved in the
Pediatric Disclosure disclosure process two to five times, while 10
(24%) had been involved in the process only once.
Cape
Winelands Mopani
Participants who had received training were more
n 5 40 n 5 33 likely to have been involved in disclosure with a
n % n % child: 24 (75%) of those who had received training
Disclosure training versus 8 (25%) of those who had not.
Physician There was a noticeable association between
Yes 5 71 – – participant occupation and likelihood of having
No 2 29 – – received training, having been involved in the
Nurse disclosure process with a caregiver and child, and
Yes 3 17 3 17
No 15 83 15 83
the number of times involved in the disclosure pro-
Counselor cess. In both districts, nurses were least likely to
Yes 9 60 12 80 have received training (n 5 6, 17%) and were least
No 6 40 3 20 likely to have been involved in the disclosure pro-
Have been involved in the cess with a child. This was more pronounced in
disclosure process
the CWD, where 67% (n 5 12) of nurses fell
Physician
Yes 6 86 – – into this category. Nine (60%) counselors in the
No 1 14 – – CWD and 12 (80%) counselors in Mopani reported
Nurse that they had received training, and 67% (n 5 20)
Yes 6 33 9 50 had been involved in the disclosure process with a
No 12 67 9 50 child. In the CWD, physicians were most likely to
Counselor
Yes 10 67 10 67
have received training (n 5 5, 71%) or to have
No 5 33 5 33 been involved in the disclosure process with a child
Times involved in disclosure process (n 5 6, 86%). Physicians (n 5 3, 43%) were also
Never 18 45 14 42 more likely than counselor (n 5 3, 20%) and nurse
Once 6 15 4 12 (n 5 1, 6%) counterparts to have been involved in
2-5 times 9 23 6 18
the disclosure process more than five times or too
More than 5 times 4 10 3 9
Too often to count 3 7.5 6 18 many times to count. In Mopani where physician
support was absent, this level of involvement was
 Myburgh et al. / Disclosing to Children That They Are Living with HIV
similar for nurses (n 5 5, 28%) and counselors
(n 5 4, 27%).
Practices
None of the sampled facilities had standard, coor-
dinated practices for guiding disclosure with care-
givers in place. This finding was further marked by
the variation in questionnaire responses between
participants from the same facilities, with some
participants stating that they had good disclosure
practices in their facility, while their colleagues
were unsure or disagreed entirely. In both districts,
nurses (n 5 26, 72%) were more likely than coun-
selors (n 5 8, 53% in the CWD; n 5 10, 66% in
Mopani) to show disagreement or neutrality about
disclosure practices at their facilities.
If a child would come in here and ask me [why
they are coming to the clinic] I don’t know what I
would do really. I don’t know whether I would tell
the child or if the mother would want the child to
know. Or what would I do? [Nurse, Facility 1, CWD]
I do disclosure, but if I am not there, it is not
done . So we have to empower each other to be
continuous at stations (the responsibility for disclo-
sure must be shared across the health worker team
and not with one individual only) [Counselor, Facility
G1, Mopani].
Sixty-six percent (n 5 48) of participants indicated
that their facility supported disclosure to children,
while 15% (n 5 9) of CWD participants and 23%
(n 5 5) of Mopani participants were neutral or
unsure. Fifteen percent (n 5 11) indicated that disclo-
sure was not practiced. Again, these responses differed
between participants from the same facilities. Physi-
cians were the only occupation type to show 100%
agreement regarding facility support for disclosure,
suggesting that where physicians were available,
disclosure may have been physician driven and, in
some instances, occurred in isolation from the rest of
the clinic team. In group discussions, physicians
demonstrated an active sense of duty and
responsibility to ensure that disclosure took place.
As such, they more easily initiated disclosure discus-
sions with caregivers and young children, and put pres-
sure on caregivers of older children to fully disclose.
One of the physicians in our sample would not shy
away from using HIV-related terms such as viral
7
load, ART, and HIV in her clinic encounters so as to
encourage the process. Some physicians had also
found locally developed disclosure booklets to facili-
tate discussions with caregivers and children. Coun-
selors and nurses most commonly expressed their
involvement in the disclosure process in terms of
encouraging caregivers to disclose. Should caregivers
express apprehension, the latter categories of health
workers would defer to caregivers to lead the process
rather than to actively pursue it with them.
The sensitivity of telling a child about HIV infec-
tion was consistently referred to in participant talk
about pediatric disclosure. This included the diffi-
culty of assessing readiness, lack of preparedness
and confidence to guide disclosure, and fears related
to HIV stigma and possible negative consequences of
disclosure: ‘‘The child will just think that her mother
was reckless, that she didn’t have protected sexual in-
tercourse. That was why she was infected’’ [Coun-
selor, Facility G1, Mopani].
Participants tied the need for systematic disclosure
to the perception that there was a ‘‘golden time’’
when full disclosure should occur: But you can also
miss that stage [where the child is ready to have
HIV named] . if you wait too long . the day
when you say it, then he knows already . There
are a few who become worried that you are hiding
something from them [Physician, Facility 2, CWD].
Responsibility for Telling the Child
Ninety percent (n 5 66) of the participants agreed
that helping caregivers disclose should be part of
routine HIV services for children. Health workers
acknowledged that caregivers were often reluctant
to disclose partially or fully and, as such, caregivers
were singled out as a chief barrier to disclosure in
their facilities. ‘‘[A challenge is] always the
parent . I don’t force them because they have to
deal with [the child after]. So if they are ready, I sup-
port them, I refer [them to my colleagues]’’ [Nurse,
Facility 8, CWD].
This also meant that for some health workers,
disclosure had become a taboo subject. Responding
to the statement: I feel that health workers should
only discuss the issue of disclosure if caregivers
ask about it; 30% (n 5 12) of participants in the
CWD and 21% (n 5 7) of Mopani participants
8 JANAC Vol. -, No. -, -/- 2018
agreed or strongly agreed with the statement. Physi-
cians were the only occupation type to show 100%
disagreement, suggesting that they were more likely
than counselors or nurses to broach the topic of
disclosure with caregivers. The legality of testing
and disclosing to children was also raised: 34%
(n 5 25) of participants were unsure or believed
that it was illegal to disclose a child’s HIV status
to him/her, with physicians being the only occupa-
tion type to show 100% disagreement with the state-
ment. The following excerpt from a group
discussion illustrated these uncertainties: ‘‘I don’t
know how the law around it works, if the parents
say you cannot disclose. You want to disclose
because your responsibility lies foremost with the
patient’’ [Physician, Facility 2, CWD].
Health workers generally expected caregivers to
tell the child about his/her illness and treatment,
and to be the ones to name the disease (i.e., full
disclosure). ‘‘You feel regret and shame to have to
tell the child directly, because you want the child to
have known already. For someone to have told him.
The parents or someone’’ [Nurse, Facility 5, CWD].
Health workers explained this expectation by
referring to their roles as providing clinical care and
medical information. They saw this in contrast to
disclosure, which they felt warranted a degree of in-
timacy and familiarity that they suggested were lack-
ing in their relationships with patients and for
which they were not equipped to provide adequate
support. ‘‘I give more chance to the caregiver to
explain . because they trust the caregiver more
than us’’ [Counselor, Facility G1, Mopani]. ‘‘We
have to do [disclosure] involving a multi-
disciplinary team because we as health professionals
. deal only with the drugs . but we don’t know
much about . clients who’s having problems with
regard to this HIV status’’ [Counselor, Facility G2,
Mopani].
Asking caregivers about their interactions with
children regarding the disease and treatment elicited
surprised responses from health workers if a care-
giver was found not to have engaged the child about
their illness or clinic visits. Some health workers
also placed greater responsibility for disclosure on
biological parents: ‘‘It is not my responsibility .
the mom must . but I didn’t know that it is not
the [biological] mom, it’s the aunt’’ [Counselor, Fa-
cility 5, CWD].
The tension between wanting to support caregivers
to disclose and the acknowledged limitations in being
able to assess a child’s readiness as well as knowl-
edge of the home situations of their patients elicited
wariness of this topic in health workers and, in
many instances, caused them to avoid it altogether.
‘‘We don’t know [what] will happen [to the child]
at home with their relatives, when they are at home
after [she’s] heard that she’s HIV positive’’ [Coun-
selor, Facility G1, Mopani].
Discussion
Our study was conducted in two rural health set-
tings in South Africa markedly different with respect
to cultural context, HIV profile, resource availability,
and service organization. The CWD was well re-
sourced, with a lower patient:provider ratio, and,
for a South African context, relatively low HIV prev-
alence (Massyn et al., 2016). While the CWD pediat-
ric HIV program was supported by physicians,
nurses, and, to a lesser extent, counselors, the Mopani
district program was chiefly staffed by nurses and
counselors. Counselors fulfilled a significant role in
Mopani’s pediatric program. There was also greater
cultural heterogeneity in Mopani. However, there
was a more noticeable cultural divide between the
Colored and Black populations who were most
frequently patrons of the public health service in
the Western Cape Province, and who also made up
health service staff (Coovadia, Jewkes, Barron,
Sanders, & McIntyre, 2009). Despite these differ-
ences, findings from the two settings were compara-
ble and also reflected those in other health settings
in South Africa (Madiba & Mokgatle, 2015; Myer
et al., 2006; Watermeyer, 2013) and Africa more
broadly (Bikaako-Kajura et al., 2006; Ubesie, 2012;
Vreeman et al., 2013).
Pediatric disclosure posed a tangible concern for
the health workers included in our sample; they
considered it an important and urgent issue, yet
none of the facilities had consistent practices in place
to guide the disclosure process. Data from question-
naires indicated that the majority of health workers
 Myburgh et al. / Disclosing to Children That They Are Living with HIV
had never been involved in the disclosure process or,
alternatively, only once or two to five times. In the
context of the size of South Africa’s pediatric ART
program (Lilian et al., 2016), these numbers sug-
gested that rates of disclosure may still be low in
our settings and were similar to disclosure rates re-
ported in earlier studies (Madiba et al., 2013;
Mahloko & Madiba, 2012; Naidoo & McKerrow,
2015). Health workers’ low rates of training and
experience and their uncertainties about who
carried the responsibility for disclosure may also be
supported by insufficient investment and political
will in this issue by government and implementing
partners; none of the study participants knew that
national disclosure guidelines were available.
In our study, nurses and counselors from the Mo-
pani district expressed greater confidence in their
abilities to guide disclosure between caregivers and
children than their CWD counterparts. One reason
for this observed difference could be that disclosure
was deferred to physicians if they were available,
which could encourage marginal involvement of
other categories of health workers. As such, in the
Mopani district, where physicians were not available
at the primary care level, counselors were more
likely to be involved in the process. In both settings,
nurses were the least likely health worker category
to have received training on disclosure, to have
been involved in the disclosure process with a care-
giver and child, and to have the lowest involvement
in the disclosure process overall. This was a
novel finding that needs to be considered when
implementing in-facility interventions that aim to
achieve a caregiver-led, health worker-supported
disclosure as advocated by WHO (2011), and on
which South Africa’s in-country guidelines are
modeled.
Breaking the Silence: Enabling Systematic
Age-Appropriate Disclosure
Delayed disclosure with children who are living
with HIV is well documented (Madiba & Mokgatle,
2015; Moodley et al., 2006; Watermeyer, 2013), as
are the negative consequences for treatment
outcomes (Bikaako-Kajura et al., 2006; Nabukeera-
Barungi et al., 2015) and the caregiver–child relation-
9
ship (Mahloko & Madiba, 2012; Wiener et al., 2007).
In our study we found that, in most cases, without
prior agreement, health workers and the caregiver–
child dyads in their care enacted a pervasive silence
related to HIV. Bond (2010) explained that this
silence was often pragmatic for caregivers in that it
allowed them to spare the child the burden of
knowing that s/he was living with HIV; it may have
suspended parental guilt related to transmitting the
virus to the child; and it may have offered some sense
of security for the caregiver being able to control
limited disclosure to select others. At the same
time, low levels of training about the disclosure pro-
cess, ambiguity about their roles in the process, and
uncertainty about the child’s maturity and home sup-
port caused many health workers to be complicit in
this silence or to defer to particular health workers
in their facilities. As a result, disclosure was seldom
directly addressed with caregivers in the privacy of
the consultation room. In this context, how can sys-
tematic, age-appropriate disclosure be enabled in
health facilities? If caregivers act as the gatekeepers
to disclosure to their children, how can this barrier
be overcome?
Our findings bring attention to the urgent need
for interventions that can offer a bridge between
the need for systematic pediatric disclosure prac-
tices that health workers conduct, and low levels
of confidence with its practice that hamper health
workers’ full involvement and ownership of the
process. In particular, such intervention and training
must first address how ownership for the disclosure
process is positioned at the facility level. This is a
dynamic that occurs not only between caregiver and
health worker, as is widely reported (Madiba et al.,
2013; Madiba & Mokgatle, 2015; Naidoo &
McKerrow, 2015), but also between different
categories of health workers and within health
worker teams (Watermeyer, 2013). Identifying
how health worker teams are comprised, and the
role that each category of health worker performs
in various settings, can indicate where support is
most required. For example, in both districts we
studied, there was a clear participation gap of
nurses in the disclosure process. At the same
time, depending on different categories of health
worker involvement in the disclosure process,
10 JANAC Vol. -, No. -, -/- 2018
strategic decisions could be made about which
health worker category should drive the disclosure
process with patients (e.g., physicians in the
CWDs, counselors in Mopani). This could inform
their own training needs and those of their support-
ing counterparts. Second, strategies should be
aimed at assisting health workers to introduce
disclosure to caregivers while their children are
young, and to systematically prepare caregivers to
be comfortable engaging children by the time
they are ready to be fully disclosed. As suggested
by some participants, this golden time–when the
child reaches cognitive maturity and is ready for
HIV to be named–can be missed if the caregiver
has not been adequately prepared and is, therefore,
resistant. In particular, attention must be given to
how age-appropriate disclosure is communicated
and emphasized with caregivers. And third, tools
for health workers that help to guide the disclosure
process between the caregiver and child are needed.
These tools have been shown to effectively over-
come barriers to disclosure at health worker and
caregiver levels (O’Malley et al., 2015).
While the findings presented here are an important
starting point for informing interventions to
strengthen disclosure practices, they raise further
questions that need to be explored: How do different
categories of health workers participate or take up
different elements of the disclosure process in other
health settings in South Africa and abroad? Which
health workers are best placed to lead the disclosure
process between caregivers and their children? How
do we successfully influence the care roles of health
workers to encourage ownership and involvement in
disclosure? How is disclosure an indicator of the
relationship between health worker and patient and
between the caregiver and child? How can relation-
ships of care be fostered in facility settings? What
strategies can facilitate earlier introduction of the
disclosure process with caregivers (during postnatal
care, for instance)?
Limitations
Our study had specific limitations. We could
not report the number of children that had
received no, partial, or full disclosure in either
district as this was not recorded in patient files
in the facilities. But, in the questionnaire, health
workers reported the number of times that they
had been involved in the disclosure process,
which offered a proxy indication of the occur-
rence of disclosure.
In the Mopani district, the qualitative data
collected were limited to counselors. This posed
obvious limitations to analysis of the group discus-
sions. The difficulty of involving nurses in this
research can also be considered as an indication of
the relevance to their everyday scope of practice.
Many interventions that aim to strengthen disclosure
practices focus on nurses, while our study showed
that nurses were least likely of any health worker
category to be involved in disclosure at their facil-
ities. In addition, we studied health worker-reported
practices of disclosure in their facility settings and,
as such, had a limitation in the nuance with which
health worker daily actual practices related to the
disclosure process could be represented.
Conclusions
Barriers to pediatric HIV disclosure are widely re-
ported in the literature and implementable interven-
tions that help health workers and caregivers
address this sensitive issue in a systematic, age-
appropriate, and supportive way in all highly affected
countries have become urgent. Without national stra-
tegies to train health workers how to implement avail-
able guidelines in their facility settings and across
different categories of health workers, such policies
will not become routine practice, relegating disclo-
sure to be haphazardly and singularly practiced by a
few health workers who face the issue directly and
who believe it in their scope of practice to address.
Our study is one of the first that we know
(Watermeyer, 2013) to emphasize differential partic-
ipation in disclosure across categories of health
workers, an important consideration when imple-
menting tailored interventions that aim to strengthen
pediatric HIV services in general, and disclosure spe-
cifically. Further research is needed to explore how
different categories of health workers participate in
disclosure in other health settings in and beyond
 Myburgh et al. / Disclosing to Children That They Are Living with HIV
South Africa, and how their involvement may impact
the disclosure process.
Key Considerations
 When implementing and strengthening disclo-
sure practices at the facility level, intervention
and training development must consider how
health worker teams are comprised and the
roles that each category of health worker per-
forms in various settings.
 Caregivers, health workers, and children most
often experience disclosure as challenging
when it has been delayed until the child reaches
adolescence or adulthood. Health workers
should focus on introducing disclosure to care-
givers while the child is young so that they
may engage the child before s/he is ready for
full disclosure. In particular, attention must be
given to how age-appropriate disclosure is
communicated and emphasized with caregivers.
 Tools (e.g., disclosure booklets) can help health
workers systematically guide the disclosure
process between the caregiver and child. These
have helped to effectively overcome barriers to
disclosure at the health worker and caregiver
levels.
Disclosures
The authors report no real or perceived vested in-
terests that relate to this article that could be
construed as a conflict of interest.
Acknowledgments
This study was funded by the U.S. President’s
Emergency Plan for AIDS Relief (PEPFAR) through
the United States Agency for International Develop-
ment (USAID) under Cooperative Agreement num-
ber AID-674-A-12-00015 to the Anova Health
Institute. The opinions expressed herein are those of
11
the authors and do not necessarily reflect the views
of USAID or PEPFAR. The funders had no role in
study design, data collection and analysis, decision
to publish, or preparation of the manuscript.
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