World Journal of AIDS, 2012, 2, 194-202
http://dx.doi.org/10.4236/wja.2012.23025 Published Online September 2012 (http://www.SciRP.org/journal/wja) 1
Disclosure of Parental HIV Positive Status: What, Why,
When, and How Parents Tell Their Children in the Era of
HAART in South Africa
Sphiwe Madiba, Chidi Matlala
School of Public Health, University of Limpopo, Medunsa Campus, Pretoria, South Africa.
Received June 15th, 2012; revised July 16th, 2012; accepted July 27th, 2012
ABSTRACT
The aim of the study was to explore the decision to and the process of disclosure of parental HIV status to children. Fo-
cus group interv iews were conduc ted with 21 par ents of 39 ch ildren aged 7 - 18 years. Participants were recruited from
a highly active antiretroviral treatment (HAART) program of an academic hospital in South Africa. Parents disclosed
more to older children than to younger children in the same family, and th e breadth an d depth of the info rmation shar ed
was depended on the age of the child. Communication with adolescent children included topics on HIV prevention and
unsafe sexual practices. For parents with a long history of sickness, disclosure occurred soon after the diagnosis was
made, when they had not commenced with antiretroviral treatment (ART). They disclosed to prepare their children for
HIV related emergencies and imminent death. Parents also expected support from their older children after disclosure.
Some parents were forced to disclose because children suspected their HIV status, and parents could not continue to
hide symptoms like severe weight loss. In addition, parents disclosed to educate children on how to protect themselves
from HIV infection. For most parents, disclosure was unplanned, emotive, and burdened with anxiety and fear of reject-
tion by their children. However, when the decision to disclose was made, parents were honest and open and informed
their children that they were HIV positive. Parents may benefit from disclosure support services, and health care pro-
viders can assist parents in deciding when and how to disclose.
Keywords: South Africa; Disclosure; HIV; Children; Parents; Antiretroviral Treatment
1. Introduction
South Africa is home to the world’s largest populatio n of
people living with HIV (PLWH), and the total number of
PLWH in South Africa in 2009 was 5.7 million [1]. In
response to the HIV epidemic, the government of South
Africa developed a strategy to provide antiretroviral treat-
ment (ART) to people who need it, consequently an in-
creased number of people have access to ART in South
Africa [2]. Similar to well developed countries, the in-
creasing availability of ART in South Africa have led to a
change in the conceptualization of HIV from a fatal dis-
ease to a chronic illness [2,3]. Whereas in the absence of
ART HIV was considered to be fatal, in the context of
ART it is no longer associated with im pendi ng deat h [ 4-6].
ART increases the length and quality of life of HIV-in-
fected people by reversing the immunodeficiency charac-
teristic of AIDS [7]. As HIV becomes more of a chronic
disease HIV positive parents are more likely to raise their
children for many years, and disclosure of parental HIV
status to children has become an increasingly significant
issue [8].
Disclosure of parental HIV status to children has been
shown to affect the well-being of children, parents, and
family positively [9]. Disclosure of the mother’s HIV
status to children is associated with better adherence to
clinic appointments, as mothers do not need to hide their
medical care [8]. However, the process of disclosing HIV
to children is one of the most difficult issu es parents deal
with, most parents, particularly mothers, struggle with
decisions about when and how to disclose HIV to their
children [10-14]. In addition, parents face the difficult
decision of what detail information to share about their
HIV status with their children [15]. The problems mo th er s
anticipate in disclosing, translate into low rates of dis-
closure to children in both developed and developing
countries [9,16].
Earlier studies show that disclosure is related to parental
desire to prepare children to face parental death [17].
However, with increased access to ART, HIV has be come
a chronic illness, and an HIV diagnosis does not neces-
sarily signal imminent death, and may not influence the

Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the
Era of HAART in South Africa 195
decision for disclosure to children [13,16]. According to
Schrimshaw and Siegel [13], PLWH live healthier lives
because of the increased access to ART; therefore their
rates and reasons for disclosure to children may differ
from the pre ART era.
The increased access to ART and increased survival of
adults and children in South Africa calls for an in-depth
understanding of the decision to and the process of
parental HIV disclosure to their children. Available data
show that most studies examining parental disclosure to
children before and after the introduction of ART were
conducted in developed countries; only a few of these
studies are from developing countries [9,18]. A recent
systemic review on parental disclosure practices [9] sho w s
that only eight (20%) of the reviewed articles were from
African and Asian countries. Qiao et al. [9] further
argues that disclosure practices of families affected by
HIV living in developing countries are likely to differ be-
cause of various cultural and social contexts. Furthermore,
most of the qualitative studies conducted in developing
countries focused on parental disclosure from the pers-
pective of the mothers only. This study used a qualitative
approach to explore the process of parental HIV disclosure
to children from the perspectives of fathers and mothers in
the era of highly active antiretroviral therapy (HAART).
The aim of the study was to explore with a sample of
parents enrolled in an HAART program of an academic
hospital in South Africa about when, what, why, and how
they disclose their HIV status to their children.
2. Methods and Materials
2.1. Study Design
We conducted focus group (FG) interviews with partici-
pants recruited from an adult HIV clinic of an academic
hospital in South Africa. Recruitment of study partici-
pants started after ethical approval by the Medunsa Eth-
ics and Research Committee. Data were collected be-
tween November 2010 and January 2011, and at the time
of data collection, more than 1000 adult patients were
receiving ART from this clinic.
2.2. Data Collection
The authors and a research assistant conducted the FG
interviews, and all are trained in methods of qualitative
focus group design. Two open ended FG guides, one for
disclosed and one for non-disclosed parents was used for
the FG interviews. The guid es were develop ed in English
and translated into Setswana, a local language spoken by
most participants in the study site. Participants were
recruited during their routine visit to the clinic; recruitment
was done in the mornings while they awaited their turn to
be seen by the doctor, and or collect medication. After
information was provided about the study, participants
who were interested in being a part of the study and met
the inclusion criteria of being a biological parent of a child
aged between 7 and 18 years were selected for the FG
interviews. We obtained a written informed consent from
individual participants prior to the start of the interview.
The FG interviews were conducted in Setswana and were
audio recorded with the part ici pan ts’ per missi on. FG inter-
views lasted for about 60 to 90 minutes. All FG interviews
were conducted on the same day of recruitment while
participants waited for their medication. Participants were
served refreshments at the en d of the intervi ews. A total of
six FG interviews were conducted with disclosed and
non-disclosed parents of children aged between 7 - 18
years. Each FG interview had an average of seven par-
ticipants with a total of 44 participants.
Socio-demographic information of the participants and
their children was collected at the end of the FG interviews
using a brief self-administered tool. The questionnaire
collected demographic information including age, level of
education, marital status, employment status, date of HIV
diagnosis, and period on ART. Participants provided
information on their children including number of children,
the age of the children, gender, the HIV status of the
children, and whether or not they ha d d isc lo sed th eir HI V
status to their children .
The Medunsa Research Ethics Committee of the Uni-
versity of Limp opo granted ethical approv al for the study.
Permission to conduct the study was obtained from the
hospital management of Dr George Mukhari Academic
hospital. Participation in the study was voluntary, and the
researchers ensured confidentiality throughout data col-
lection. Informed consent was obtained fro m participants
prior to the FG interviews.
2.3. Data Analysis
The recorded FG interviews were first transcribed verba-
tim in Setswana by a transcriptionist and then translated
into English by the authors. Each transcribed transcript
was reviewed for accuracy by replaying each interview
tape whilst reading and translating the transcript. The pri-
mary coding of the transcripts was undertaken by the au-
thors. Multiple readings of one transcript were undertaken
by the authors who independently identified major themes
from the trans cript. From th e init ial readin g, a set of major
themes related to the process of disclosure between HIV
positive parents and their children were identified and
defined. NVivo version 8 was used in the application of
themes to the remaining transcripts to determine if new
themes identified from additional readings are consistent
with themes identified from the initial reading of the
transcript. Themes that were consistent in terms of the
process of disclosure becam e categories.

Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the
Era of HAART in South Africa
196
3. Results
3.1. Sample Description
This paper presents data from three FG interviews con-
ducted with a sample of disclosed HIV positive parents
who had children aged between 7 - 18 years. A total of
21 parents aged between 20 - 50 years participated in the
FG interviews. Table 1 shows the demographic profile of
Table 1. Socio-demographic profile of participants.
Variable name Frequency Percent
Age
20 - 30 1 4.8
30 - 40 11 52.4
40 - 50 7 33.3
50 - 60 2 9.5
Gender
Male 5 23.8
Female 16 76.2
Employment status
Unemployed 12 57.1
Employed 4 19.1
Part time
emplo
the participants. The 21 parents cared for 39 children
aged between 7 and 18 years. Sixteen of the parents
disclosed to all of their ch ildren while five told some, but
not all of their children. A total of 33 out of 39 children
were told about the HIV status of their parent. Only one
of the disclosed children was HIV positive.
3.2. Themes
Four major themes emerged through analysis Table 2:
what parents tell, when parents tell, why parents tell, and
how parents tell children during disclosure of parental
HIV status. Each of these themes is described below.
3.2.1. What Parents Tell
The data show that when the decision to disclose was
taken, most parents were honest in disclosing HIV to
their children and full disclosure occurred. Parents told
their children that they were HIV positive, and also gave
additional information ab out their medication:
I sat down and talked to them, and told them that I
went to the clinic and learned that I am HIV positive...,
you need to know that I am HIV positive. They did not
say anything; they came to me and gave me hugs (Single
mother of 2 children).
I sat them down because they are old enough the older
one was 17 years, and the younger one was 13 years, and
I said…, you see this medication that I am taking
protects me from the disease called HIV, so I am HIV
positive. How I got it, when and where I cannot tell, I do
not know an d I wo n’t know (Single mot her of 2).
yment 5 23.8
Level of education
Primary education 10 47.6
Secondary education 6 28.6
Grade 12 4 19.1
Tertiary education 1 4.8
Marital status
Single 13 61.9
Married 5 23.8
Living with partners 1 4.8
Widowed 2 9.5
No. of children
One child 7 33.3
Two children 10 47.6
Three children 4 19.1
No. of children parents
disclosed to
One child 11 52.38
Two children 8 38.1
Three children 2 9.52
Some parents requested their children to keep the
disclosure secret and not discuss it with other people.
The data show that even when parents did not give their
children instructions not to tell other people, they be-
lieved that their children understood the nature of the
disease and knew that they sh ould not tell people outside
the family. Secrecy is used to protect children from
social rejection and discrimination that may be subjected
to the whole family or to the children:
I started telling the child that she must not tell
anybody, because people are going to diagnose me. After
giving birth to my baby, some woman in the neigh-
bourhood asked my daughter whether her sibling is
being breast fed. She said “she is drinking from the
bottle” and the woman wanted to know whether the
Table 2. Summary of identified themes.
What parents tell
When do parents tell?
Why parents tell
How parents tell

Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the
Era of HAART in South Africa 197
name of the milk formula was Nan because HIV positive
people give their babies this milk. I said, “don’t tell her,
do not tell anybody” even though they will hear about
it…, they will hear somewhere else; you must never talk
about that with people (Single mother of 2 children).
At seventeen, she knows that it is a family secret and
then if you tell she will never talk (Single mother of 3
children).
3.2.2. When Do Parents Tell?
Participants were asked about the time it took from
diagnosis to the time they disclosed their HIV diagnosis
to their children. Our data show that for some of the
parents, disclosure was easy, and they disclosed soon
after the diagnosis was made.
I did not take long, immediately I found out that I was
HIV positive I told them, I told them when I was still in
counselling, I told them that I am positive when I was
going through coun selling (Single mot her of 2 children).
I just told them straight from the beginning that I’m
sick and told them that they must keep on taking care of
themselves and that they must not be surprised when I
keep on taking medication, some of the pills are for TB
and the others are for AIDS (Divorced father of 2
children).
In contrast, some parents disclosed long after the HIV
diagnosis. These parents found it emotional and difficult
to discuss their HIV status with th eir children.
I took a long time without telling him, I waited until
after he completed grade 12. I was scared that he will
feel miserable and maybe think my mother is dying, my
father is dead, my mother is also going to die…, so who
are we going to be left with…, what is going to happen?
So I was scared to hurt him, and I did not tell him
anything until he completed grade 12. After completing
grade 12, I told him (Widowed mother of 2 children).
It was scary, but I thought that I must just tell them. I
used to think that someone with HIV dies immediately not
knowing that one can survive while taking treatment
(Married father of 2 children).
Some parents believe that disclo sure to children should
occur before their health deteriorates as children can be
more easily reassured that the parent is not going to die
in the near future.
It will not be right to tell them that you are sick when
you are bedridden, because you can die at any time. So,
when you tell them while you are still fine they will heal
and accept that their mother is HIV positive. I mean I
don’t have to hide that I a m HIV positive, I must tell her
that I’m HIV and that one day I will be in the stage
where I will have AIDS and will leave you, and you will
be alone (Single mother of 2 children).
One mother, who was critically ill when she was
diagnosed, delayed disclosure while she continued taking
ART waiting for her health status to improve. She then
used her p revious ill health and improved health status to
reassure her children who thought that their parent was
going to die soon, as this mother explains.
The older one cried. She thought that I was going to
die; I was going to get ill and die. I said do you
remember the time when I was seriously ill and had TB,
it was TB and this disease. She wanted to know if it can
be cured and I said the medication that I take suppress
the disease but does not cure it, I will take them for the
rest of my life. She does not worry anymore because she
can see that I am healthy, and I do not get sick anymore
(Single mother of 1 child).
3.2.3. Why Parents Tell
For parents who were critically ill at the time of
disclosure, they disclosed because they wanted their
children to take care of them in case their health sud-
denly deteriorates. In the same breath, parents wanted to
prepare their children for future AIDS-related illness so
that they would know what to do in an emergency should
the health of the parent suddenly deteriorates. This is in
contrast to parents who believed that disclosure should
occur when the parent’s health has improved. For these
parents, disclosure was motivated by the need for support
from their children:
I decided to tell them because life is difficult, I can
become ill at any time, and the children won’t know what
is happening with me. So if I told them about my con-
dition, they can rush me to the doctor or call an ambu-
lance to come and take me so that I can get help
immediately (Single mot her of 2 children).
There is nothing I can do on my own because I’m
relying on them, if I can be critically ill they must know
what I suffer from and also to know what I need (Married
father of 2 children).
If I collapse my child will know what to do, the first
thing she will call the ambulance, and secondly she will
show the ambulance people my treatment (Single mother
of 1 child).
Parents also disclosed because they wanted to educate
their children about the disease so that they can take care
of themselves and prevent getting infected from HIV.
The need to educate children on how to avoid HIV
infection was motivated by the fact that parents disclosed
to older or adolescent children in the family.
What made me tell my child is that I did not want her
to engage in things that she is not supposed to be
engaged in. I was not talking to her as a parent; I was
talking to her as if I am counselling her. So that she can
see that this disease exists, so that she must not think that
only other people can be infected, or only older people

Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the
Era of HAART in South Africa
198
they must know that they are still growing up and that
this thing exists and that she must take care of herself
and behave well (Sin gl e mother of 2 children).
I decided to tell them that I’m HIV positive so that they
must always take care of themselves. They must not fall
into the same trap I fell into. If you don’t tell you will be
unfair to your children. Because we could not protect
ourselves from being infected, and now this illness is
everywhere, they must not go through the same mistakes
as we did (Divorced father of 2 children).
Parents, particularly mothers, used disclosure as an
opportunity to educate their children about how to avoid
contact with blood in case of an emergency at home:
Because you are going to need help from the family…,
so the children must know that when you bleed they must
wear gloves or something that they can use to help you
so that they must not end-up being infected (Single
mother of 2 children).
The reason I told my children that I had this disease I
wanted to protect them, maybe if I have an accident and I
am bleeding I want them to know how to help me (Single
mother of 3 children).
The data also show th at some of the parents who had a
long history of illness were forced to disclose to their
children. Children could identify some of the signs and
symptoms related to HIV illness and started to suspect
their parent’s HIV status. Parents relate how their
children confronted them about their illness.
I use to be fat, so when I lost weight they asked me
why I was losing weight so much. They wanted to know
why I have flu every two weeks; they asked why my flu
was not getting cured. They said, “at school they teach us
that if a person has persistent flu and is not cured it
might be that they are HIV positive” (Single mother of 3
children).
The way it was, they were already suspecting some-
thing. These children were already suspecting even the
family because I was seriously ill…, it was obvious even
for the people I am staying with. I was seriously ill,
emaciated, and critically ill, and I was unable to do
anything (Married father of 3 children).
But I took long before telling her and it came to a time
that she asked me about the treatment, she wanted to
know what the pills are for an d why I was drinking them
at a specific time all the time. I told her that I am sick,
and she told me that at school, th ey to ld them abou t HIV.
She said you know these pills are like the ones that the
nurse was teaching us about when she visited our school.
I said no these are not like those. She then said, “let’s go
to the clinic so that you must be tested”. I said why, she
said mom I can see that you became thin, and you have
changed. I said no my child I am not like that. She cried
and said “I won’t tell anyone if you can tell me, I will
keep it a secret”. I then sat her down and explained to
her that I am positive and that I started taking my
treatment (Sing le mother of 2 children).
Forced disclosure also occurred because children asked
direct questions about their parent’s treatment more
especially the pattern of medication. This also suggests
that the children were suspecting their parent’s illness
based on observi n g their peculiar patter n of medication.
Yes, but they saw more pills, and they asked, and I
explained to them that some of this pills are for HIV and
these other ones are for TB (Divorced father of 2
children).
I told her because she was questioning me when she
saw me taking medication for two months she said when
will you finish? I ended up telling her that these pills are
for the rest of my life (Single mother of 3 children).
Parents also disclosed to prevent the possibility of
children learning about the parent’s HIV status from
other people in the family or the community.
I think it is important to tell the child abou t your status
as a parent. Because sometimes you don’t tell the child
and he/she hears it from other people. When the child
hears it from other people it does not sound nice. The
child might be angry with you and might leave home
without telling you (Single mother of 3 children).
3.2.4. How Parents Tel l
Data show that most participants first told their parents
about their HIV status before disclosure to their ch ildren.
In family-orientated societies family support is valued,
and mothers especially may play a much more important
role in the process of disclosure as expressed in the fol-
lowing statement:
It is your parents who must know your status first,
after that, you disclose to your ch ildren and then to other
relatives so that they can all give you support (Single
mother of 3 children).
I think that my parent is the first to know and must
know and has the right to know about my illness. I
understand that she is th e person who will feel more pa in
for me in everything that happens to me (Widowed
mother of 2 children).
Disclosures often take place over the course of several
conversations, though for most parents in this study it
occurred in one sitting. For a few parents, disclosure was
continuous, and they recounted times when they had
talks about HIV related sexual and reproductive health
topics with their children.
We talk, we sit down and talk, when we do not have
any thing to talk a bout , we talk about HIV (Single mother
of 2 children).
When we are just sitting I explain to my child what is
happening ab out AIDS. I tell her that she mu st not do it. I

Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the
Era of HAART in South Africa 199
tell her that sex, I tell her that you are better because you
have not started engaging into sex, so don’t even start
engaging yourself into sexual acts (Single mother of 1
child).
Parents in this study often disclosed to older children
but not to younger children in the same family, and the
majority of parents had more than 2 children. Mothers
often delayed disclosure to the younger children because
they questioned whether their younger children would
understand the information given to them:
Well the younger one is 12 years he will be 13 years
old I haven’t told him anything (Widowed mother of 2
children).
My elder daughter knew for a long time it is her sib-
lings that didn’t know anything. She knew from 2008 that
was positive because she was the elder one and she was
matured. The other children started knowing this year
when I became critically ill (Single mother of 3 children).
4. Discussion
The study describes the process of disclosing HIV
between parents and their biological children and offers
data on the information that parents share with their
children, how this information is shared as well as the
reasons parents disclose to their children. The findings
show that the decision to disclose was difficult and
emotional for all parents. Prior to disclosure, they were
scared, anxious, and stressed that the child would react
negatively to disclosure. Consequently, disclosure was
first to their parents and sexual partners before parents
disclosed to their children. Similar findings were re-
ported [14,19]. Although disclosure to children is emo-
tive for parents, most children who know their parents
HIV status were informed by their parents. In this study
and others, parents believed that they should be the ones
to disclose their HIV status to their children [12]. The
reason mothers take a leading role in disclosing to their
children is because their decision to disclose is informed
by the child’s ability to understand the information.
Mothers also want to disclose their illness to their chil-
dren in a reassuring manner [13,20]. With regards to the
time it took before parents disclosed to their children, we
found that some parents disclosed soon after the diag-
nosis was made. For these parents, disclosure was moti-
vated by self-benefit. They disclosed so that they could
receive help and support from their children. Parents
mentioned that they wanted their children to know their
condition so that they could take care of them when their
condition becomes critical. Similar findings where the
decision to disclose is motivated by self-benefit were
previously reported [12,18]. The authors suggest that
disclosure makes it easier for parents to ask for, and
receive support from their children and family once they
knew the seriousness of the problem [12,18]. Earlier
studies conducted with HIV positive mothers also report
that one of the reasons they disclosed to their children
was the need for support from older children [21]. Find-
ings from this study and others show that children res-
ponded with gestures of comfort, acceptance and support
to parental disclosure [20].
We further found that the health status of parents who
disclosed soon af ter an HIV d iagnosis was compro mised,
suggesting that the decision to disclose was also pro-
mpted by the parents’ ill health. Evidence from previous
studies shows that parents disclose to their children when
their health deterior ate or when they believe that death is
imminent [13-15,17,21,22]. These data further support
the suggestion that self-interest plays a role in the pa ren ts ’
decision to disclose to their children. It should be noted
that though self-interest plays a role in d isclosure of HIV
to children in this study, studies conducted prior to the
availability of ART report that parents disclosed to pre-
pare children to face parental death [17]. This pheno-
menon was also observed in this study. Although the
participants were enrolled in an HAART program, most
were diagnosed following a long history of illness, and
disclosure occurred at a time when they suffered from a
myriad of HIV opportunistic infections and had not com-
menced with their ART. Suggesting that disclosure occurred
before they experienced the benefits of ART when they
believed that death is imminent, hence the need for
support from their children.
Disclosure also occurs within a context where children
suspect their parents’ HIV status. Children learn about
HIV from various sources including the TV and at school
and are able to identify some of the HIV related sym-
ptoms by observing their parents’ deteriorating health
condition [18,23]. One mother had been sick for a long
time when her 11 year old advised her to go for an HIV
test because she recognized some of the HIV related
symptoms the mother had. We found that when children
questioned parents about their deteriorating health,
parents were forced to disclose. Forced disclosure to chil-
dren was reported in other studies conducted with HIV
positive mothers [14,15,18,19,21,23,24]. According to
Armistead et al., [19] forced disclosure occurs when it
becomes more difficult for mothers to hide their sym-
ptoms from their children. In this study, one of the
symptoms that parents could not hide is severe weight
loss. These are parents who were diagnosed after a long
history of chronic HIV related illness. In contrast to
parents who disclosed when their health condition was
compromised, other parents believe that disclosure sh ould
be deferred when the parent is weak or critically ill.
Parents in this study and others felt that children
should be prepared for fu ture HIV related illn ess or death

Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the
Era of HAART in South Africa
200
while the parent is healthy, so that children do not think
that parental death is an immediate possibility. Parents
believe that good physical state would help to reassure
children that it was possible to live a relatively normal
life for some time [13]. Before the availability of ART
parents would disclose before their health begins to
deteriorate [13], with increased access to ART, parents
are likely to delay disclosure until their health become
stable [14]. Similarly, parents in this study believed that
if the child has seen the parent critically ill but become
stable subsequent to taking ART, then the child may not
be so fearful of HIV and will be better assured that the
parent is not going to die soon. One mother in this study
gave an account on how she made her child recall the
time when she was critically ill, and compared that time
to her current health status when she disclosed. Parents
also used the medication as an introduction to the
disclosure event and often told their children that the
medication was protecting them from the disease.
One of the reasons parents in this study and other
studied disclosed is to prepare children for emergency
situations. Parents wanted children to know what to do in
case of emergency, like when the parent suddenly falls
seriously ill [13]. Consistent with other studies, parents
in this study also used disclosure to educate their children
about HIV, and on how to avoid contact with their
parents’ blood [10,13]. Similar to other studies, parents
of older children and adolescents disclosed to educate
them about HIV transmission and unsafe sexual practices
[13,21,25]. Our study findings are in contrast with other
studies in the region, a study conducted in Botswana,
found that parents do not discuss sexual topics related to
the transmission and prevention of HIV when they dis-
closed their HIV to children. The study argues that
discussions around HIV transmission and sexual prac-
tices with children are taboo and inappropriate [15].
While in our study, one father believed that he had to be
open and direct about HIV transmission to prevent his
children from falling in the HIV trap that he finds
himself. Furthermore, for some of the parents in this
study, disclosure was a continuous process and often the
conversations they had with their children were about
HIV, safe sexual practices and prevention of HIV trans-
mission.
In this study, parents disclosed to children for various
reasons already discussed above. The reasons for dis-
closure determined the breadth and depth of the infor-
mation parents share with their children. We found that
when the decision to disclose was made, full disclosure
occurred, and parents were open and honest and in formed
their children that they were HIV positive. For parents
who disclosed to get support from children, disclosure
focused on telling their children what to do in case their
condition suddenly deteriorates from HIV related illness.
While for parents who wanted to protect their children
from being infected with HIV, the disclosure discussion
focused on what to do to avoid contact with the blood of
their parents in case of an accidental bleeding. In line
with other studies, some parents told their children to
keep the parent’s HIV status secret [12,14,18]. It should
be noted that parents who did not openly tell their
children to keep the HIV status secret, expected their
children not to tell because they are supposed to know
that HIV is a family secret. The decision to keep the HIV
status secret is founded on the desire to protect their
children from ridicule, teasing, and social rejection, espe-
cially in an environ ment where stig ma and d iscrimination
are rife.
We further found that the age of the child was a key
consideration in parental disclosure, and that it also
determined how much information children got from
their parents. This finding is in line with other studies
[10,12,14,16,19,20]. Parents who had more than one
child in this study, disclosed to older child ren earlier than
to younger children. Older children were told about the
parent’s HIV status because parents believed that they
were more matured to understand the disease, were more
likely to offer support to the parent, know what to do in
case of medical emergency, know how to avoid contact
with parental blood and keep the disclosed diagnosis
secret. These findings are consistent with previous stu dies
[14,17,26,27].
The study concludes that for most parents, disclosure
to children was unplanned, emotive, and burdened with
anxiety, and fear of rejection by their children. The anxi-
ety and fear of disclosure should be viewed in the context
where disclosure occurs in an environment characterized
by stigma, discrimination, and fear of death from HIV/
AIDS. Consequently, parents disclosed more to older
children than to younger children in the same family be-
cause older children were regarded as mature to keep the
parents’ HIV status secret. Disclosure was also charac-
terized by honesty, openness, and full disclosure, where
parents informed their children that they were HIV posi-
tive. However, the breadth and depth of the information
shared is depended on the age of the child. Communica-
tion with adolescent children included topics on preven-
tion of HIV transmission and uns afe sex ual pract i ces.
Despite enrolment in an HAART program, most par-
ents disclosed to prepare their children for HIV related
emergencies and imminent death of the parent. This was
common amongst parents who disclosed when their
health was severely compromised, and disclosed to re-
ceive support from their older children. Parents also dis-
closed to educate children to protect themselves from
HIV infection. Lastly, parents were also forced to dis-

Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the
Era of HAART in South Africa 201
close because children suspected their parents’ HIV
status, and they could not continue to hide symptoms like
severe weight loss or deny their HIV status. This finding
is critical in parental disclosure to children, and suggests
that parents might not be able to control how their chil-
dren learn about their HIV infection. When children sus-
pect their parent’s HIV infection, they live in fear of the
pending death of their parents. Parents may benefit from
disclosure support services to assist and guide the proc-
ess of disclosure for both the parent and child. Health
care providers have a role in assisting parents in deciding
when and how to disclose. In counselling parents for
disclosure, they should inform parents about the effects
of disclosure and nondisclosure on their children.
5. Acknowledgements
The study was funded by the Directorate General for
Development Cooperation (DGDC) through the Flemish
Interuniversity council (VLIR-UOS). We thank Mr Nick
Maubane, the research assistant, for his role in data col-
lection. We also thank health care providers from the
wellness clinic at the Dr George Mukhari Academic hos-
pital for their guidan ce and assistance during data collec-
tion.
REFERENCES
[1] UNAIDS, “Report on the Global AIDS Epidemic,” UN-
AIDS, Geneva, 2009.
http://www.unaids.org/en/dataanalysis/epidemiology/200
9aidsepidemicupdate/
[2] O. Shisana, T. Rehle, L. C. Simbayi, K. Zuma, S. Jooste,
et al., “South African National HIV Prevalence, Incidence,
Behaviour and Communication Survey 2008: A Turning
Tide among Teenagers?” HSRC Press, Cape Town, 2009.
http://www.hsrc.ac.za/Document-3239.phtml
[3] K. Bhaskaran, O. Hamouda, M. Sannes, F. Boufassa, A.
M. Johnson, et al., “Changes in the Risk of Death after
HIV Seroconversion Compared with Mortality in the
General Population,” Journal of the American Medical
Association, Vol. 300, No. 1, 2008, pp. 51-59.
doi:10.1001/jama.300.1.51
[4] S. Biadgilign, A. Deribe, A. Amberbir and K. Deribe,
“Barriers and Facilitators to Antiretroviral Medication
Adherence among HIV-Infected Paediatric Patients in
Ethiopia: A Qualitative Study,” AIDS Care, Vol. 6, No. 4,
2009, pp. 148-154.
[5] M. Ferris, K. Burau, A. M. Schweitzer, S. Mihale, N.
Murray, et al., “The Influence of Disclosure of HIV Di-
agnosis on Time to Disease Progression in a Cohort of
Romanian Children and Teens,” AIDS Care, Vol. 19, No.
9, 2007, pp. 1088-1094. doi:10.1080/09540120701367124
[6] S. Kallem, L. Renner, M. Ghebremichael and E. Paintsil,
“Prevalence and Pattern of Disclosure of HIV Status in
HIV-Infected Children in Ghana,” AIDS and Behavior,
Vol. 15, No. 6, 2010, pp. 1-7.
[7] L. R. McKinnon, M. Kimani, C. Wachihi, N. J. Nagel-
kerke, F. K. Muriuki, et al., “Effect of Baseline HIV Dis-
ease Parameters on CD4+ T Cell Recovery after Antiret-
roviral Therapy Initiation in Kenyan Women,” PLoS One,
Vol. 5, No. 7, 2010, Article ID: e11434.
doi:10.1371/journal.pone.0011434
[8] C. A. Mellins, E. Brackis-Cott, C. Dolezal, A. Richards, S.
W. Nicholas, et al., “Patterns of HIV Status Disclosure to
Perinatally HIV-Infected Children and Subsequent Men-
tal Health Outcomes,” Clinical Child Psychology and
Psychiatry, Vol. 7, No. 1, 2002, pp. 101-114.
doi:10.1177/1359104502007001008
[9] S. Qiao, X. Li and B. Stanton, “Disclosure of Parental
HIV Infection to Children: A Systematic Review of
Global Literature,” AIDS and Behavior, 2011, pp. 1-21.
[10] S. T. Hawk, “Disclosures of Maternal HIV Infection to
Seronegative Children: A Literature Review,” Journal of
Social and Personal Relationships, Vol. 24, No. 5, 2007,
pp. 657-673. doi:10.1177/0265407507081453
[11] D. A. Murphy, “HIV-Positive Mothers’ Disclosure of
Their Serostatus to Their Young Children: A Review,”
Clinical Child Psychology and Psychiatry, Vol. 13, No. 1,
2008, pp. 105-122. doi:10.1177/1359104507087464
[12] J. Rwemisisi, B. Wolff, A. Coutinho, H. Grosskurth and J.
Whitworth, “‘ What If They Ask Ho w I Got It?’ D ile mma s
of Disclosing Parental HIV Status and Testing Children
for HIV in Uganda,” Health Policy and Planning, Vol. 23,
No. 1, 2008, pp. 36-42. doi:10.1093/heapol/czm040
[13] E. W. Schrimshaw and K. Siegel, “HIV-Infected Moth-
ers’ Disclosure to Their Uninfected Children: Rates, Rea-
sons, and Reactions,” Journal of Social and Personal Re-
lationships, Vol. 19, No. 1, 2002, pp. 19-43.
doi:10.1177/0265407502191002
[14] T. Tompkins, “Disclosure of Maternal HIV Status to
Children: To Tell or Not To Tell … That Is the Ques-
tion,” Journal of Child and Family Studies, Vol. 16, No. 6,
2007, pp. 773-788. doi:10.1007/s10826-006-9124-z
[15] L. Nam, K. Fielding, A. Avalos, T. Gaolathe, D. Dickin-
son, et al., “Discussing Matters of Sexual Health with
Children: What Issues Relating to Disclosure of Parental
HIV Status Reveal,” AIDS Care, Vol. 21, No. 3, 2009, pp.
389-395. doi:10.1080/09540120802270276
[16] A. Shaffer, D. J. Jones, B. A. Kotchick and R. Forehand,
“Telling the Children: Disclosure of Maternal HIV Infec-
tion and Its Effects on Child Psychosocial Adjustment,”
Journal of Child and Family Studies, Vol. 10, No. 3, 2001,
pp. 301-313. doi:10.1023/A:1012502527457
[17] D. Pilowsky, N. Sohler and E. Susser, “Reasons Given
for Disclosure of Maternal HIV Status to Children,”
Journal of Urban Health, Vol. 77, No. 4, 2000, pp. 723-
734. doi:10.1007/BF02344033
[18] D. Kennedy, B. Cowgill, L. Bogart, R. Corona, G. Ryan,
et al., “Parents’ Disclosure of Their HIV Infection to
Their Children in the Context of the Family,” AIDS and
Behavior, Vol. 14, No. 5, 2010, pp. 1095-1105.
doi:10.1007/s10461-010-9715-y

Disclosure of Parental HIV Positive Status: What, Why, When, and How Parents Tell Their Children in the
Era of HAART in South Africa
202
[19] L. Armistead, L. Tannenbaum, R. Forehand, E. Morse
and P. Morse, “Disclosing HIV Status: Are Mothers
Telling Their Children?” Journal of Pediatric Psychology,
Vol. 26, No. 1, 2001, pp. 11-20.
doi:10.1093/jpepsy/26.1.11
[20] R. O. Delaney, J. M. Serovich and J. Y. Lim, “Reasons
for and against Maternal HIV Disclosure to Children and
Perceived Child Reaction,” AIDS Care, Vol. 20, No. 7,
2008, pp. 876-880. doi:10.1080/09540120701767158
[21] A. H. Vallerand, E. Hough, L. Pittiglio and D. Marvicsin,
“The Process of Disclosing HIV Serostatus between HIV-
Positive Mothers and their HIV-Negative Children,”
AIDS Patient Care and STDs, Vol. 19, No. 2, 2005, pp.
100-109. doi:10.1089/apc.2005.19.100
[22] M. B. Lee and M. J. Rotheram-Borus, “Parents’ Disclo-
sure of HIV to Their Children,” AIDS, Vol. 16, No. 16,
2002, pp. 2201-2207.
doi:10.1097/00002030-200211080-00013
[23] T. Xu, Z. Yan, K. Rou, C. Wang, R. Ye, et al., “Disclo-
sure of Parental HIV/AIDS to Children in Rural China,”
Vulnerable Children and Youth Studies, Vol. 2, No. 2,
2007, pp. 100-105. doi:10.1080/17450120701335791
[24] D. A. Murphy, M. E. Dello Stritto and W. N. Steers,
“Maternal Disclosure of Mothers’ HIV Serostatus to
Their Young Children,” Journal of Family Psychology,
Vol. 15, No. 3, 2001, pp. 441-450.
doi:10.1037/0893-3200.15.3.441.
[25] E. Brackis-Cott, C. Mellins and M. Block, “Current Life
Concerns of Early Adolescents and Their Mothers: Influ-
ence of Maternal HIV,” The Journal of Early Adoles-
cence, Vol. 23, No. 1, 2003, pp. 51-77.
doi:10.1177/0272431602239130
[26] R. A. Ostrom, J. M. Serovich, J. Y. Lim and T. L. Mason,
“The Role of Stigma in Reasons for HIV Disclosure and
Non-Disclosure to Children,” AIDS Care, Vol. 18, No. 1,
2006, pp. 60-65. doi:10.1080/09540120500161769
[27] M. J. Rotheram-Borus, D. Flannery, E. Rice and P Lester,
“Families Living with HIV,” AIDS Care, Vol. 17, No. 8,
2005, pp. 978-987. doi:10.1080/09540120500101690.