Factors Associated with HIV/AIDS Diagnostic Disclosure
to HIV Infected Children Receiving HAART: A
Multi-Center Study in Addis Ababa, Ethiopia
Sibhatu Biadgilign1*, Amare Deribew1, Alemayehu Amberbir2, Horacio Ruisen ˜or Escudero3, Kebede
1Department of Epidemiology and Biostatistics, College of Public Health and Medical Science, Jimma University, Jimma, Ethiopia, 2Addis Ababa University, Addis Ababa,
Ethiopia, 3Department of International Health, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, United States of America,
4Department of General Public Health, College of Public Health and Medical Science, Jimma University, Jimma, Ethiopia
Background: Diagnostic disclosure of HIV/AIDS to a child is becoming an increasingly common issue in clinical practice.
Nevertheless, some parents and health care professionals are reluctant to inform children about their HIV infection status.
The objective of this study was to identify the proportion of children who have knowledge of their serostatus and factors
associated with disclosure in HIV-infected children receiving HAART in Addis Ababa, Ethiopia.
Methods: A cross-sectional study was conducted in five hospitals in Addis Ababa from February 18, 2008–April 28, 2008. The
study populations were parents/caretakers and children living with HIV/AIDS who were receiving Highly Active
Antiretroviral Therapy (HAART) in selected hospitals in Addis Ababa. Univariate and multivariate logistic regression analysis
were carried out using SPSS 12.0.1 statistical software.
Results: A total of 390 children/caretaker pairs were included in the study. Two hundred forty three children (62.3%) were
between 6–9 years of age. HIV/AIDS status was known by 68 (17.4%) children, 93 (29%) caretakers reported knowing the
child’s serostatus two years prior to our survey, 180 (46.2%) respondents said that the child should be told about his/her
HIV/AIDS status when he/she is older than 14 years of age. Children less than 9 years of age and those living with educated
caregivers are less likely to know their results than their counterparts. Children referred from hospital’s in-patient ward
before attending the HIV clinic and private clinic were more likely to know their results than those from community clinic.
Conclusion: The proportion of disclosure of HIV/AIDS diagnosis to HIV-infected children is low. Strengthening referral
linkage and health education tailored to educated caregivers are recommended to increase the rate of disclosure.
Citation: Biadgilign S, Deribew A, Amberbir A, Escudero HR, Deribe K (2011) Factors Associated with HIV/AIDS Diagnostic Disclosure to HIV Infected Children
Receiving HAART: A Multi-Center Study in Addis Ababa, Ethiopia. PLoS ONE 6(3): e17572. doi:10.1371/journal.pone.0017572
Editor: Jacqueline Ho, Penang Medical College, Malaysia
Received January 20, 2011; Accepted February 9, 2011; Published March 21, 2011
Copyright: ? 2011 Biadgilign et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits
unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Funding: This study was funded by Jimma University. The university had no role in the study design, data collection and analysis, decision to publish, or
preparation of the manuscript.
Competing Interests: The authors have declared that no competing interests exist.
* E-mail: email@example.com
HIV/AIDS is increasingly affecting the health and welfare of
children and undermining hard-won gains in child survival in
some highly affected countries . Recent estimates from the
Joint United Nations Programme on HIV/AIDS (UNAIDS)
suggest that, globally, about 2.5 million children younger than 15
years of age are infected with HIV; 90% of whom live in sub-
Saharan Africa . As highly active antiretroviral therapy
(HAART) becomes increasingly available in low-resource set-
tings, children affected by this disease are living longer ,
experience a less symptomatic early course of the disease and
survive to older ages , with improved quality of life . Given
this scenario, the question of disclosure of HIV status to infected
children is becoming increasingly important. Knowledge of HIV
status may affect compliance with antiretroviral therapies and
influence children’s participation in healthcare decision-making
. The American Academy of Pediatrics guidelines on
disclosure of HIV illness states that all adolescents should know
their HIV status, while disclosure should be considered for
school-age children . In Ethiopia, it is recommended that
adolescents 14 years of age old and older should know their HIV
Caregivers and healthcare workers are presented with an
array of challenges around disclosure, including deciding on
what is in the child’s best interest and when, why and how
information about his/her HIV status should be shared with
him/her . Disclosure of a child’s HIV/AIDS is becoming an
increasingly common clinical issue. Nevertheless, some parents
and health care professionals are reluctant to inform the affected
children about it. Data from several sites in other countries
indicates that between 25% and 90% of school-age children with
HIV infection/AIDS have not been told that they are infected
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Consequently, preparing family members for the emotional
impact of disclosure is a major task facing providers. Also,
disclosure takes on new significance, both within and outside the
family, as sexuality becomes a dominant developmental issue
during adolescence . In the context of HAART, disclosure
may have an important impact on disease progression and clinical
management . However, in one study, interviewed caregivers
reported low disclosure rates (9%)  and healthcare providers
reported low levels of direct involvement in disclosure to HIV-
infected children (18%) . Despite the importance of HIV
disclosure, there has been limited research addressing pediatric
HIV/AIDS disclosure, particularly in sub-Saharan Africa.
Clinical setting and Sample
In Ethiopia, the health system is arranged as a four-tier system,
which includes: facility, district, city (region/zone/sub) and federal
which should be appropriately linked, equitably distributed and
managed in a decentralized, participatory and efficient manner.
The Government of Ethiopia launched fee-based antiretroviral
treatment in 2003 and free HAART in 2005. As of July 2010,
about 97,000 adults and 4,800 children are accessing HAART
services in the country. Guidelines from the Ethiopian National
Pediatric HIV/AIDS Care and Treatment Guideline recommend
HAART initiation in infants ,12 months of age, as well as for all
infants under 12 months of age with confirmed HIV infection,
irrespective of clinical or immunological stage. For children 12
months of age or older, the World Health Organization (WHO)
Paediatric Clinical Stage 4 disease (irrespective of CD4), WHO
Paediatric Clinical Stage 3 disease (irrespective of CD4), WHO
Paediatric Clinical Stage 2 disease and CD4 value at or below
threshold. WHO Paediatric Clinical Stage 1 disease and CD4
value at or below threshold, and HIV antibody positive infants
,18 months of age where virologic testing is not available to
confirm HIV infection should be considered for HAART if they
have clinically diagnosed severe HIV disease.
The study was carried out in selected antiretroviral therapy
units of 5 tertiary level general hospitals in Addis Ababa, Ethiopia
(Black Lion, Saint Peter, Yekatit 12, Zewditu, and ALERT) which
serve as the major referral and reference hospitals in Ethiopia.
According to the report obtained from registration records, at the
time of the study, about 1,624 children were registered for
HAART in the selected hospitals.
Of 1624 patients on HAART, 390 (100%) scheduled to present
for care or pharmacy pick-ups between February 18 and April 18,
2008 fulfilled the inclusion criteria and were offered to participate.
In this study most of the patients/caregivers use bus or taxi to
attend the clinics.
The study design was a facility based cross-sectional study. This
study was nested as part of a large Multicenter Pediatrics Cross-
Sectional study that is published elsewhere .
Children who fulfilled the following criteria were included in the
study: 1) Receiving continuous antiretroviral therapy for the past
12 weeks before the study in the selected hospitals; and 2)
caregivers who had been previously counseled on the importance
of drug adherence and on how to recognize common adverse drug
reactions associated with antiretroviral drugs.
The study and survey instrument were approved by the
Institutional Ethical Review Committee of Jimma University and
Research Ethics Committee of Addis Ababa Health Bureau.
Official letters of co-operation from the above organization and
Federal Ministry of Health (FMOH) were given to respective
hospitals. Only caregivers gave written consent for participation in
the study. Data were collected by five trained HIV counselors,
who were trained on how to interview caregivers with sensitivity,
empathy and without expressing judgment. Interviews were
carried out privately in a separate room in the Hospital where
participants were recruited. In order to ensure participants’
confidentiality, no names or personal identifiers were included in
the written questionnaires. Identification of an informant was only
possible through numerical codes.
The outcome for this study was disclosure of HIV/AIDS
serostatus to the participating children. Data was collected by
structured questionnaire that had not been previously validated,
which was originally developed in English and later translated to
Amharic and retranslated back to English by a different person to
check for consistency. The content of the questionnaire included:
socio-demographic and socio-economic characteristics, medication
related factors, health care delivery system related factors, which
included access to care, quality of services, and diagnosis related
intensive training was given for all supervisors and data collectors.
Data entry and analyses was carried out using SPSS version 12.0.1
statistical packages. One trained data clerk entered and cleaned the
data. Stepwise logistic regression was done to identify factors
associated with disclosure. Variables that showed statistical signifi-
cance below or equal to p#0.05 where retained for the final model.
Socio-demographic and economic characteristics
Out of 390 children ages 1–14 (mean=8.52, standard deviation
[SD]=2.97] years), 243 (62.3%) children were between 6–9 years
of age, 215 (55.1%) were girls and 297 (76.2%) caregivers reported
being Ethiopian Orthodox Christian. Of the 390 (100%)
caregivers, 176 (45.1%) had primary school education; 174
(44.6%) caregivers were married. Two hundred and seventy seven
(71.7%) caregivers mentioned that no one had helped the child
financially for their treatment needs, while 6.4% biological fathers
and 6.4% local Non-governmental Organizations (NGO’s) were
reported as being responsible for offering financial support to some
of the children. The baseline socio-demographic and economic
characteristics are presented in Table 1.
HIV infection, diagnosis, and treatment
Out of the 390 respondents, 210 (53.8%) had someone else
living with HIV in their home. One hundred seventy seven of the
individuals (84.3%) were taking HAART during the survey period,
of which 59 (33.3%) were receiving HAART services in the same
facility as the child and 27 (15.25%) had the same day
appointment as the child. When asked about the time of the
child’s diagnosis, 320 (82.1%) caregivers knew it, 114 (29%)
caregivers said that they had known about the child’s HIV
serostatus 2 years prior to the survey. Almost half, 191 (49%)
children were referred for HIV screening from the hospital’s in-
patient ward and 131 (33.6%) from the community clinic.
Nutritional support including Ready-to-use Therapeutic Food
(RUTF) provision was provided to 260 (66.7%) children from the
child had started HAART. From the 390 (100%) children/caretakers
surveyed, 186 (54.4%) had started treatment 2 years before the survey
was implemented. Of the children who were taking medication other
than ARVs, cotrimoxazole, anti-Tuberculosis medication, as well as
multi-vitamins were the most frequently used with 360 (92.3%), 68
(17.8%) and 20 (5%) children taking them, respectively.
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Table 1. Disclosure status of children on HAART in Addis Ababa, Ethiopia in 2008, by demographic and social characteristics.
VariableDisclosure status n (%)P-value
Not disclosed Disclosed
Age of the child (N=390) 0.001
0–5 years (n=58)54(18.8) 4(5.9)
6–9 years (n=243) 215(66.8)28(41.2)
Sex of the child(N=390) 0.349
Boy(n=175) 141(43.8) 34(50.0)
Religion (N=390) 0.07
Caregiver’s educational status (N=390) 0.001
Unable to read and write(n=94)64(19.9) 30(44.1)
Diploma and above(n=52) 45(14.0)7(10.3)
Marital status of the caregiver(N=390)0.049
Single(n=38) 30(9.3) 8(11.8)
Family income (USD per month) (N=390)0.026
11 -,16(n=50) 43(13.4)7(10.3)
$16 (n=63) 59(18.3) 4(5.9)
Relation of child-caregiver(N=390) 0.162
Mother (n=62)54(87.0) 8(16.8)
Grandmother/father (n=112)99(88.4) 13(30.7)
Offering financial aid/support for the child(N=390)0.499
Preferred age of disclosure by the caregivers (years) (N=390)0.09
Do you know any other children in your community who has HIV?(N=389)0.816
Received child care grant(n=390)0.003
1Catholic, Protestant and Muslim.
2by himself/herself, Sister, Brother, Father, Both (mother/father) and Foster parents.
3Father, Local NGO, Uncle, Relatives and Family, Exchange rate 1 USD=9.6 Ethiopian Birr (ETB).
HIV/AIDS Diagnostic Disclosure
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Social Support, Disclosure and Perceived Stigma and
Three hundred and twenty-two (82.6%) of the children who
participated in the study did not know their HIV serostatus. For
none disclosures, 104 (32.3%) caregivers reported that their
children were told that they had Tuberculosis (TB) and that their
children assumed they were being taken to the health facility for
TB appointments. Ninety-four (24.1%) of the caregivers had been
attending a support group for caregivers of children with HIV and
89 (94.7%) attended a community organization for social support.
When caregivers were asked about the age at which the child
should know about his/her serostatus, 180 (46.2%) respondents
said that the child should be told about his/her HIV status when
he/she was older than 14 years of age, while 54 (13.8%) pointed
out that disclosure should be made at the age of 14. When
caregivers were asked about who should have the responsibility of
disclosing HIV serostatus to the child, 193 (60%) believed that the
doctor should be responsible. A total of 270 (69.2%) respondents
reported that they knew other children with HIV in the
community (Table 2).
A total of 78 (20%) children reported being discriminated by
their neighbors. Out of the 78 (20%) children that reported
discrimination, 10 (13%) were from the HIV disclosed group and
68 (87%) were from the HIV non-disclosed group. One hundred
and ninety-five (50%) of the caregivers reported as children or
families affected by HIV/AIDS, including orphans are sometimes
HIV/AIDS disclosure predictors
After controlling for the effects of other variables in the
multivariate logistic regression analysis, four characteristics were
associated with disclosure of HIV status to children. Comparing
children in the 10–14 years age group to children in the 0–5 age
group and to those in the 6–9 years of age group, we observed that
the last two groups are statistically significant less likely to be
informed of their HIV status [(aOR=0.11; 95% CI=0.03–0.34
and (aOR=0.19 ; 95% CI=0.10–0.37, respectively)]. Perceived
awareness of a child of caregiver’s illness was also found to be
associated with disclosure status. Children who were perceived to
know their caregivers health problem were statistically significant
more likely to be informed about their HIV status than their
counterparts (aOR=2.20; 95% CI: 1.14–4.28). Educational status
of the caregivers was also statistically significant associated with
disclosure. Children with caregivers that have education at or
above primary level are statistically significant less likely to be
informed of their result than those with illiterate caregivers
(aOR=0.28; 95% CI: 0.13–0 .54, aOR=0.33; 95% CI: 0 .13–
0.84 and aOR=0.32; 95% CI: 0.12–0.86 comparing caregiver
with no education vs. primary education, secondary education and
diploma and above, respectively). Level of referral for HIV
screening was associated with disclosure. Compared to children
referred from community clinic, those children referred from
hospitals (aOR=2.87; 95% CI: 1.26–6.51) and private practition-
ers/NGOs (aOR=3.88; 95% CI: 1.57–9.58) were more likely to
be informed about their HIV test results (Table 3).
In this study only 68 (17.4%) children knew their serostatus.
This is lower than the 33% reported in a study conducted in
Uganda  but comparable with other studies conducted in
Europe [17,18]. Generally, the prevalence of disclosure varies
widely across studies and settings, from less than 50% to about
75% of children and youths [19,20]. The lower prevalence of
disclosure in our study might be due to fear of stigma and
discrimination by the family members that are not aware or/and
caregiver’s perceived lack of emotional preparedness of the
children and if the child is told he/she will reveal to others
leading to stigma and discrimination to the family.
In our study, most caregivers prefer to delay disclosure up to
older ages (above 14), this being consistent with previous findings
[21,22]. In addition, it has been documented that parents view
children over the age of 12 as emotionally mature for disclosure of
HIV status [22–26]. In many studies, older children was found to
be a determinant factor for the children’s’ knowledge about their
HIV status. Bor et.al reported 100% disclosure in children 16 years
of age and older  and likewise; Cohen et.al reported that 95%
of children older than 10 years of age were aware of their HIV
status in Massachusetts . Similar findings were also docu-
mented elsewhere [15,16]. This could be due to the caregivers’
belief that at early age, the child is lacking the emotional and
cognitive maturity needed to understand the disease and
implications [19,24,29,30]. The perception that adolescence is
the optimal period for disclosure may relate to the idea that at this
life stage, children are now able to cope with this type of
information and address any concerns that they may have as they
become sexually active (e.g. HIV transmission) . In our
analysis we included children less than 3 years old to explore the
disclosure status for all pediatric age groups. Their inclusion might
reduce the disclosure rate; however they do not represent a
significant proportion of the participants so we do not expect that
the relationship is significantly affected due to their inclusion.
The relationship between HIV disclosure and educational level
has been documented elsewhere [31,32]. Wiener et al.  found
that more children who knew their HIV status came from families
with a higher socio-economic status and as education is a proxy
indicator of higher social economic status. In our study, illiterate
caregivers were more likely to disclose the child’s HIV status than
Table 2. Patterns of disclosure characteristics of caregivers
and children in Addis Ababa, Ethiopia [N=390], April 2008.
Child know his/her HIV status
People who know child’s HIV status
Who do you think should be the person responsible for
disclosure of HIV status? *
Health worker (doctor/councilor) 193(60)
@Teacher/school, Cousins, Neighbors and Grandfather.
*Total does not add up to 390 caregivers given that 68 were already aware of
their HIV status. Some percentages don’t add to 100% due to rounding.
HIV/AIDS Diagnostic Disclosure
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caregivers with a higher educational level. Again, those caregivers
who didn’t pay for their child’s medication before HAART intake
were 62% less likely to disclose the child’s serostatus. Similar
findings were reported by Wiener et al. in which more children
who knew their HIV status came from families with a higher socio-
economic status  but opposite to the study found in Thailand,
as more children whose caregivers reported having financial
problems knew their diagnosis than those whose care givers did
not report to have any financial problems . In the Ethiopian
context, affluent families might want to keep their family’s status
quo by avoiding disclosure.
In practical terms, it is difficult for caregivers to handle the
psychological adjustments of their HIV infected children. If the
child is aware of the health problem of his/her caretaker,
disclosure is more likely to occur. A mother’s disclosure of any
chronic or life-threatening illness to her child is often accompanied
by some level of hesitation and/or anxiety regarding the child’s
reaction [33,34]. Similarly, mothers with HIV/AIDS might be
particularly worried about their children learning of their illness
given the stigma associated with the disease, as well as the methods
of transmission [21,35,36]. In some cases, caretakers feel relieved
of the burden of keeping the secret, and less anxious about medical
visits and the possibility of accidental disclosure [9,37]. Once the
caregiver’s senses that the child has known the caregivers health
problem, it might be easier to disclose the HIV status .
According to Murphy et al.  children’s’ knowledge of maternal
HIV/AIDS status is associated with an increase in child
psychosocial adjustment, including enhanced self-esteem among
children who know of their mother’s HIV infection.
The strength of our study is the large sample size, which
represents an important amount of caregivers and their children
receiving HAART in Ethiopia in multiple treatment sites, which
represent the major HAART reference hospitals in Addis
Ababa. Some of the limitations that we identified were the
following: first, our sample is limited to urban settings, which
might curb any extrapolation of our finding to other settings in
Ethiopia. We could not outline whether the differences in
disclosure status are associated with cultural factors or other
characteristics that were not included in this study. In addition,
we acknowledge the possibility of potential selection bias in our
study; we investigated only HIV disclosure among people living
with HIV/AIDS (PLWHAs) under HAART, but HAART may
have a confounding impact on disclosure. Finally, the selection
of continuous therapy for 12 weeks and previous counseling on
adherence and adverse drug reactions-may bias the results of the
In conclusion, the rate of disclosure of pediatric HIV positive
status was low in children in Addis Ababa. Given that there is no
published research found in the country, this finding will provide
evidence regarding pediatric HIV serostatus disclosure. To
increase disclosure rate, it is important to target children from
higher socioeconomic classes and educated caregivers, children
referred from community clinics and younger children. In
addition, encouraging disclosure of caregivers’ health problems
might facilitate disclosure. Intensified information education and
communication to de-stigmatize the disease might have far
reaching impact. Caregivers and health providers should have a
co-responsibility to decide on the proper time to disclose. Finally,
as more information is known regarding HIV infection in children
and young adults who will become sexually active and who might
potentially engage in high risk behavior for HIV infection and
other sexually transmitted diseases as well as blood borne diseases
(Hepatitis C Virus), we need to be aware that current and future
guidelines that consider HIV disclosure need to be flexible, so new
Table 3. Final Logistic Regression Model for Predictors of Disclosure of HIV/AIDS diagnosis to HIV-infected children in Addis
Ababa, Ethiopia, April, 2008.
VariablesDisclosure status Crude OR** (95%CI) P-value Adjusted OR (95%CI)P-value
Yes n (%) No n (%)
Age of the child (years)0.0010.001
0–54(5.9) 54(16.8)0.11(0.03–0.32) 0.11(0.03–0.34)
Child perceived to know health status of caregiver0.0370.019
Yes 24(35.3) 59(18.3)2.43(1.37–4.30)2.20(1.14–4.28)
Educational level of caregiver0.0040.002
Unable to read and write30(44.1)64(19.9)1.001.00
Primary (1–8 grade) 21(30.9)155(48.1)0.29(0.15–0.54) 0.28(0.13–0 .54)
Secondary (8–12 grade) 10(14.7)58(18.0)0.37(0.17–0.82) 0.33(0 .13–0.84)
Diploma and above7(10.3) 45(14.0)0.33(0.13–0.82) 0.32(0.12–0.86)
Place of referral for HIV screening0.0190.011
From community clinic10(14.7)98(30.4)1.001.00
Hospital in-patients ward35(51.5)155(48.1)2.20(1.05–4.67)2.87(1.26–6.51)
Private practitioner/NGO*22(32.4)50(15.5) 4.31(1.89–9.80)3.88(1.57–9.58)
*-Non Governmental Organization.
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information can be included with the ultimate goal of improving
the life of children living with HIV and of their caregivers.
We are also very grateful to extend our gratitude to the study participants
and data collectors.
Conceived and designed the experiments: SB AD AA KD. Performed the
experiments: SB AD AA KD. Analyzed the data: SB AD AA KD HRE.
Contributed reagents/materials/analysis tools: SB AD AA KD HRE.
Wrote the manuscript: SB AD AA KD HRE.
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PLoS ONE | www.plosone.org6March 2011 | Volume 6 | Issue 3 | e17572